qualitative research trustworthiness criteria

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Application of four-dimension criteria to assess rigour of qualitative research in emergency medicine

Roberto forero.

1 The Simpson Centre for Health Services Research, South Western Sydney Clinical School and the Ingham Institute for Applied Research, Liverpool Hospital, UNSW, Liverpool, NSW 1871 Australia

Shizar Nahidi

Josephine de costa, mohammed mohsin.

2 Psychiatry Research and Teaching Unit, Liverpool Hospital, NSW Health, Sydney, Australia

3 School of Psychiatry, Faculty of Medicine, University of New South Wales, Sydney, Australia

Gerry Fitzgerald

4 School - Public Health and Social Work, Queensland University of Technology (QUT), Brisbane, Qld Australia

5 Australasian College for Emergency Medicine (ACEM), Melbourne, VIC Australia

Nick Gibson

6 School of Nursing and Midwifery, Edith Cowan University (ECU), Perth, WA Australia

Sally McCarthy

7 Emergency Care Institute (ECI), NSW Agency for Clinical Innovation (ACI), Sydney, Australia

Patrick Aboagye-Sarfo

8 Clinical Support Directorate, System Policy & Planning Division, Department of Health WA, Perth, WA Australia

Associated Data

All data generated or analysed during this study are included in this published article and its supplementary information files have been included in the appendix. No individual data will be available.

The main objective of this methodological manuscript was to illustrate the role of using qualitative research in emergency settings. We outline rigorous criteria applied to a qualitative study assessing perceptions and experiences of staff working in Australian emergency departments.

We used an integrated mixed-methodology framework to identify different perspectives and experiences of emergency department staff during the implementation of a time target government policy. The qualitative study comprised interviews from 119 participants across 16 hospitals. The interviews were conducted in 2015–2016 and the data were managed using NVivo version 11. We conducted the analysis in three stages, namely: conceptual framework, comparison and contrast and hypothesis development. We concluded with the implementation of the four-dimension criteria (credibility, dependability, confirmability and transferability) to assess the robustness of the study,

We adapted four-dimension criteria to assess the rigour of a large-scale qualitative research in the emergency department context. The criteria comprised strategies such as building the research team; preparing data collection guidelines; defining and obtaining adequate participation; reaching data saturation and ensuring high levels of consistency and inter-coder agreement.

Based on the findings, the proposed framework satisfied the four-dimension criteria and generated potential qualitative research applications to emergency medicine research. We have added a methodological contribution to the ongoing debate about rigour in qualitative research which we hope will guide future studies in this topic in emergency care research. It also provided recommendations for conducting future mixed-methods studies. Future papers on this series will use the results from qualitative data and the empirical findings from longitudinal data linkage to further identify factors associated with ED performance; they will be reported separately.

Electronic supplementary material

The online version of this article (10.1186/s12913-018-2915-2) contains supplementary material, which is available to authorized users.

Qualitative research methods have been used in emergency settings in a variety of ways to address important problems that cannot be explored in another way, such as attitudes, preferences and reasons for presenting to the emergency department (ED) versus other type of clinical services (i.e., general practice) [ 1 – 4 ].

The methodological contribution of this research is part of the ongoing debate of scientific rigour in emergency care, such as the importance of qualitative research in evidence-based medicine, its contribution to tool development and policy evaluation [ 2 , 3 , 5 – 7 ]. For instance, the Four-Hour Rule and the National Emergency Access Target (4HR/NEAT) was an important policy implemented in Australia to reduce EDs crowding and boarding (access block) [ 8 – 13 ]. This policy generated the right conditions for using mixed methods to investigate the impact of 4HR/NEAT policy implementation on people attending, working or managing this type of problems in emergency departments [ 2 , 3 , 5 – 7 , 14 – 17 ].

The rationale of our study was to address the perennial question of how to assess and establish methodological robustness in these types of studies. For that reason, we conducted this mixed method study to explore the impact of the 4HR/NEAT in 16 metropolitan hospitals in four Australian states and territories, namely: Western Australia (WA), Queensland (QLD), New South Wales (NSW), and the Australian Capital Territory (ACT) [ 18 , 19 ].

The main objectives of the qualitative component was to understand the personal, professional and organisational perspectives reported by ED staff during the implementation of 4HR/NEAT, and to explore their perceptions and experiences associated with the implementation of the policy in their local environment.

This is part of an Australian National Health and Medical Research Council (NH&MRC) Partnership project to assess the impact of the 4HR/NEAT on Australian EDs. It is intended to complement the quantitative streams of a large data-linkage/dynamic modelling study using a mixed-methods approach to understand the impact of the implementation of the four-hour rule policy.

Methodological rigour

This section describes the qualitative methods to assess the rigour of the qualitative study. Researchers conducting quantitative studies use conventional terms such as internal validity, reliability, objectivity and external validity [ 17 ]. In establishing trustworthiness, Lincoln and Guba created stringent criteria in qualitative research, known as credibility, dependability, confirmability and transferability [ 17 – 20 ]. This is referred in this article as “the Four-Dimensions Criteria” (FDC). Other studies have used different variations of these categories to stablish rigour [ 18 , 19 ]. In our case, we adapted the criteria point by point by selecting those strategies that applied to our study systematically. Table  1 illustrates which strategies were adapted in our study.

Key FDC strategies adapted from Lincoln and Guba [ 23 ]

Study procedure

We carefully planned and conducted a series of semi-structured interviews based on the four-dimension criteria (credibility, dependability, confirmability and transferability) to assess and ensure the robustness of the study. These criteria have been used in other contexts of qualitative health research; but this is the first time it has been used in the emergency setting [ 20 – 26 ].

Sampling and recruitment

We employed a combination of stratified purposive sampling (quota sampling), criterion-based and maximum variation sampling strategies to recruit potential participants [ 27 , 28 ]. The hospitals selected for the main longitudinal quantitative data linkage study, were also purposively selected in this qualitative component.

We targeted potential individuals from four groups, namely: ED Directors, ED physicians, ED nurses, and data/admin staff. The investigators identified local site coordinators who arranged the recruitment in each of the participating 16 hospitals (6 in NSW, 4 in QLD, 4 in WA and 2 in the ACT) and facilitated on-site access to the research team. These coordinators provided a list of potential participants for each professional group. By using this list, participants within each group were selected through purposive sampling technique. We initially planned to recruit at least one ED director, two ED physicians, two ED nurses and one data/admin staff per hospital. Invitation emails were circulated by the site coordinators to all potential participants who were asked to contact the main investigators if they required more information.

We also employed criterion-based purposive sampling to ensure that those with experience relating to 4HR/NEAT were eligible. For ethical on-site restrictions, the primary condition of the inclusion criteria was that eligible participants needed to be working in the ED during the period that the 4HR/NEAT policy was implemented. Those who were not working in that ED during the implementation period were not eligible to participate, even if they had previous working experience in other EDs.

We used maximum variation sampling to ensure that the sample reflects a diverse group in terms of skill level, professional experience and policy implementation [ 28 ]. We included study participants irrespective of whether their role/position was changed (for example, if they received a promotion during their term of service in ED).

In summary, over a period of 7 months (August 2015 to March 2016), we identified all the potential participants (124) and conducted 119 interviews (5 were unable to participate due to workload availability). The overall sample comprised a cohort of people working in different roles across 16 hospitals. Table  2 presents the demographic and professional characteristics of the participants.

Demographic and professional characteristics of the staff participated in the study

Dir represents ‘Director’, NUM Nursing unit manager, CNC Clinical nurse consultant

Data collection

We employed a semi-structured interview technique. Six experienced investigators (3 in NSW, 1 in ACT, 1 in QLD and 1 in WA) conducted the interviews (117 face-to-face on site and 2 by telephone). We used an integrated interview protocol which consisted of a demographically-oriented question and six open-ended questions about different aspects of the 4HR/NEAT policy (see Additional file  1 : Appendix 1).

With the participant’s permission, interviews were audio-recorded. All the hospitals provided a quiet interview room that ensured privacy and confidentiality for participants and investigators.

All the interviews were transcribed verbatim by a professional transcriber with reference to a standardised transcription protocol [ 29 ]. The data analysis team followed a stepwise process for data cleaning, and de-identification. Transcripts were imported to qualitative data analysis software NVivo version 11 for management and coding [ 30 ].

Data analysis

The analyses were carried out in three stages. In the first stage, we identified key concepts using content analysis and a mind-mapping process from the research protocol and developed a conceptual framework to organise the data [ 31 ]. The analysis team reviewed and coded a selected number of transcripts, then juxtaposed the codes against the domains incorporated in the interview protocol as indicated in the three stages of analysis with the conceptual framework (Fig.  1 ).

Conceptual framework with the three stages of analysis used for the analysis of the qualitative data

In this stage, two cycles of coding were conducted: in the first one, all the transcripts were revised and initially coded, key concepts were identified throughout the full data set. The second cycle comprised an in-depth exploration and creation of additional categories to generate the codebook (see Additional file  2 : Appendix 2). This codebook was a summary document encompassing all the concepts identified as primary and subsequent levels. It presented hierarchical categorisation of key concepts developed from the domains indicated in Fig. ​ Fig.1 1 .

A summarised list of key concepts and their definitions are presented in Table  3 . We show the total number of interviews for each of the key concepts, and the number of times (i.e., total citations) a concept appeared in the whole dataset.

Summary of key concepts, their definition, total number of citations and total number of interviews

Citations refer to the number of times a coded term was counted in NVivo

The second stage of analysis compared and contrasted the experiences, perspectives and actions of participants by role and location. The third and final stage of analysis aimed to generate theory-driven hypotheses and provided an in-depth understanding of the impact of the policy. At this stage, the research team explored different theoretical perspectives such as the carousel model and models of care approach [ 16 , 32 – 34 ]. We also used iterative sampling to reach saturation and interpret the findings.

Ethics approval and consent to participate

Ethics approval was obtained for all participating hospitals and the qualitative methods are based on the original research protocol approved by the funding organisations [ 18 ].

This section described the FDC and provided a detailed description of the strategies used in the analysis. It was adapted from the FDC methodology described by Lincoln and Guba [ 23 – 26 ] as the framework to ensure a high level of rigour in qualitative research. In Table ​ Table1, 1 , we have provided examples of how the process was implemented for each criterion and techniques to ensure compliance with the purpose of FDC.

Credibility

Prolonged and varied engagement with each setting.

All the investigators had the opportunity to have a continued engagement with each ED during the data collection process. They received a supporting material package, comprising background information about the project; consent forms and the interview protocol (see Additional file 1 : Appendix 1). They were introduced to each setting by the local coordinator and had the chance to meet the ED directors and potential participants, They also identified local issues and salient characteristics of each site, and had time to get acquainted with the study’s participants. This process allowed the investigators to check their personal perspectives and predispositions, and enhance their familiarity with the study setting. This strategy also allowed participants to become familiar with the project and the research team.

Interviewing process and techniques

In order to increase credibility of the data collected and of the subsequent results, we took a further step of calibrating the level of awareness and knowledge of the research protocol. The research team conducted training sessions, teleconferences, induction meetings and pilot interviews with the local coordinators. Each of the interviewers conducted one or two pilot interviews to refine the overall process using the interview protocol, time-management and the overall running of the interviews.

The semi-structured interview procedure also allowed focus and flexibility during the interviews. The interview protocol (Additional file 1 : Appendix 1) included several prompts that allowed the expansion of answers and the opportunity for requesting more information, if required.

Establishing investigators’ authority

In relation to credibility, Miles and Huberman [ 35 ] expanded the concept to the trustworthiness of investigators’ authority as ‘human instruments’ and recommended the research team should present the following characteristics:

• Familiarity with phenomenon and research context : In our study, the research team had several years’ experience in the development and implementation of 4HR/NEAT in Australian EDs and extensive ED-based research experience and track records conducting this type of work.
• Investigative skills: Investigators who were involved in data collections had three or more years’ experience in conducting qualitative data collection, specifically individual interview techniques.
• Theoretical knowledge and skills in conceptualising large datasets: Investigators had post-graduate experience in qualitative data analysis and using NVivo software to manage and qualitative research skills to code and interpret large amounts of qualitative data.
• Ability to take a multidisciplinary approach: The multidisciplinary background of the team in public health, nursing, emergency medicine, health promotion, social sciences, epidemiology and health services research, enabled us to explore different theoretical perspectives and using an eclectic approach to interpret the findings.

These characteristics ensured that the data collection and content were consistent across states and participating hospitals.

Collection of referential adequacy materials

In accordance with Guba’s recommendation to collect any additional relevant resources, investigators maintained a separate set of materials from on-site data collection which included documents and field notes that provided additional information in relation to the context of the study, its findings and interpretation of results. These materials were collected and used during the different levels of data analysis and kept for future reference and secure storage of confidential material [ 26 ].

Peer debriefing

We conducted several sessions of peer debriefing with some of the Project Management Committee (PMC) members. They were asked at different stages throughout the analysis to reflect and cast their views on the conceptual analysis framework, the key concepts identified during the first level of analysis and eventually the whole set of findings (see Fig. ​ Fig.1). 1 ). We also have reported and discussed preliminary methods and general findings at several scientific meetings of the Australasian College for Emergency Medicine.

Dependability

Rich description of the study protocol.

This study was developed from the early stages through a systematic search of the existing literature about the four-hour rule and time-target care delivery in ED. Detailed draft of the study protocol was delivered in consultation with the PMC. After incorporating all the comments, a final draft was generated for the purpose of obtaining the required ethics approvals for each ED setting in different states and territories.

To maintain consistency, we documented all the changes and revisions to the research protocol, and kept a trackable record of when and how changes were implemented.

Establishing an audit trail

Steps were taken to keep a track record of the data collection process [ 24 ]: we have had sustained communication within the research team to ensure the interviewers were abiding by an agreed-upon protocol to recruit participants. As indicated before, we provided the investigators with a supporting material package. We also instructed the interviewers on how to securely transfer the data to the transcriber. The data-analysis team systematically reviewed the transcripts against the audio files for accuracy and clarifications provided by the transcriber.

All the steps in coding the data and identification of key concepts were agreed upon by the research team. The progress of the data analysis was monitored on a weekly basis. Any modifications of the coding system were discussed and verified by the team to ensure correct and consistent interpretation throughout the analysis.

The codebook (see Additional file 2 : Appendix 2) was revised and updated during the cycles of coding. Utilisation of the mind-mapping process described above helped to verify consistency and allowed to determine how precise the participants’ original information was preserved in the coding [ 31 ].

As required by relevant Australian legislation [ 36 ], we maintained complete records of the correspondence and minutes of meetings, as well as all qualitative data files in NVivo and Excel on the administrative organisation’s secure drive. Back-up files were kept in a secure external storage device, for future access if required.

Stepwise replication—measuring the inter-coders’ agreement

To assess the interpretative rigour of the analysis, we applied inter-coder agreement to control the coding accuracy and monitor inter-coder reliability among the research team throughout the analysis stage [ 37 ]. This step was crucially important in the study given the changes of staff that our team experienced during the analysis stage. At the initial stages of coding, we tested the inter-coder agreement using the following protocol:

• Step 1 – Two data analysts and principal investigator coded six interviews, separately.
• Step 2 – The team discussed the interpretation of the emerging key concepts, and resolved any coding discrepancies.
• Step 3 – The initial codebook was composed and used for developing the respective conceptual framework.
• Step 4 – The inter-coder agreement was calculated and found a weighted Kappa coefficient of 0.765 which indicates a very good agreement (76.5%) of the data.

With the addition of a new analyst to the team, we applied another round of inter-coder agreement assessment. We followed the same steps to ensure the inter-coder reliability along the trajectory of data analysis, except for step 3—a priori codebook was used as a benchmark to compare and contrast the codes developed by the new analyst. The calculated Kappa coefficient 0.822 indicates a very good agreement of the data (See Table  4 ).

Inter-coder analysis using Cohen’s Kappa coefficients

Confirmability

Reflexivity.

The analysis was conducted by the research team who brought different perspectives to the data interpretation. To appreciate the collective interpretation of the findings, each investigator used a separate reflexive journal to record the issues about sensitive topics or any potential ethical issues that might have affected the data analysis. These were discussed in the weekly  meetings.

After completion of the data collection, reflection and feedback from all the investigators conducting the interviews were sought in both written and verbal format.

Triangulation

To assess the confirmability and credibility of the findings, the following four triangulation processes were considered: methodological, data source, investigators and theoretical triangulation.

Methodological triangulation is in the process of being implemented using the mixed methods approach with linked data from our 16 hospitals.

Data source triangulation was achieved by using several groups of ED staff working in different states/territories and performing different roles. This triangulation offered a broad source of data that contributed to gain a holistic understanding of the impact of 4HR/NEAT on EDs across Australia. We expect to use data triangulation with linked-data in future secondary analysis.

Investigators triangulation was obtained by consensus decision making though collaboration, discussion and participation of the team holding different perspectives. We also used the investigators’ field notes, memos and reflexive journals as a form of triangulation to validate the data collected. This approach enabled us to balance out the potential bias of individual investigators and enabling the research team to reach a satisfactory consensus level.

Theoretical triangulation was achieved by using and exploring different theoretical perspectives such as the carousel model and models of care approach [ 16 , 32 – 34 ]. that could be applied in the context of the study to generate hypotheses and theory driven codes [ 16 , 32 , 38 ].

Transferability

Purposive sampling to form a nominated sample.

As outlined in the methods section, we used a combination of three purposive sampling techniques to make sure that the selected participants were representative of the variety of views of ED staff across settings. This representativeness was critical for conducting comparative analysis across different groups.

Data saturation

We employed two methods to ensure data saturation was reached, namely: operational and theoretical. The operational method was used to quantify the number of new codes per interview over time. It indicates that the majority of codes were identified in the first interviews, followed by a decreasing frequency of codes identified from other interviews.

Theoretical saturation and iterative sampling were achieved through regular meetings where progress of coding and identification of variations in each of the key concepts were reported and discussed. We also used iterative sampling to reach saturation and interpret the findings. We continued this iterative process until no new codes emerged from the dataset and all the variations of an observed phenomenon were identified [ 39 ] (Fig.  2 ).

Data saturation gain per interview added based on the chronological order of data collection in the hospitals. Y axis = number of new codes, X axis = number of interviews over time

Scientific rigour in qualitative research assessing trustworthiness is not new. Qualitative researchers have used rigour criteria widely [ 40 – 42 ]. The novelty of the method described in this article rests on the systematic application of these criteria in a large-scale qualitative study in the context of emergency medicine.

According to the FDC, similar findings should be obtained if the process is repeated with the same cohort of participants in the same settings and organisational context. By employing the FDC and the proposed strategies, we could enhance the dependability of the findings. As indicated in the literature, qualitative research has many times been questioned in history for its validity and credibility [ 3 , 20 , 43 , 44 ].

Nevertheless, if the work is done properly, based on the suggested tools and techniques, any qualitative work can become a solid piece of evidence. This study suggests that emergency medicine researchers can improve their qualitative research if conducted according to the suggested criteria. The triangulation and reflexivity strategies helped us to minimise the investigators’ bias, and affirm that the findings were objective and accurately reflect the participants’ perspectives and experiences. Abiding by a consistent method of data collection (e.g., interview protocol) and conducting the analysis with a team of investigators, helped us minimise the risk of interpretation bias.

Employing several purposive sampling techniques enabled us to have a diverse range of opinions and experiences which at the same time enhanced the credibility of the findings. We expect that the outcomes of this study will show a high degree of applicability, because any resultant hypotheses may be transferable across similar settings in emergency care. The systematic quantification of data saturation at this scale of qualitative data has not been demonstrated in the emergency medicine literature before.

As indicated, the objective of this study was to contribute to the ongoing debate about rigour in qualitative research by using our mixed methods study as an example. In relation to innovative application of mixed-methods, the findings from this qualitative component can be used to explain specific findings from the quantitative component of the study. For example, different trends of 4HR/NEAT performance can be explained by variations in staff relationships across states (see key concept 1, Table ​ Table3). 3 ). In addition, some experiences from doctors and nurses may explain variability of performance indicators across participating hospitals. The robustness of the qualitative data will allow us to generate hypotheses that in turn can be tested in future research.

Careful planning is essential in any type of research project which includes the importance of allocating sufficient resources both human and financial. It is also required to organise precise arrangements for building the research team; preparing data collection guidelines; defining and obtaining adequate participation. This may allow other researchers in emergency care to replicate the use of the FDC in the future.

This study has several limitations. Some limitations of the qualitative component include recall bias or lack of reliable information collected about interventions conducted in the past (before the implementation of the policy). As Weber and colleagues [ 45 ] point out, conducting interviews with clinicians at a single point in time may be affected by recall bias. Moreover, ED staff may have left the organisation or have progressed in their careers (from junior to senior clinical roles, i.e. junior nursing staff or junior medical officers, registrars, etc.), so obtaining information about pre/during/post-4HR/NEAT was a difficult undertaking. Although the use of criterion-based and maximum-variation sampling techniques minimised this effect, we could not guarantee that the sampling techniques could have reached out all those who might be eligible to participate.

In terms of recruitment, we could not select potential participants who were not working in that particular ED during the implementation, even if they had previous working experience in other hospital EDs. This is a limitation because people who participated in previous hospitals during the intervention could not provide valuable input to the overall project.

In addition, one would claim that the findings could have been ‘ED-biased’ due to the fact that we did not interview the staff or administrators outside the ED. Unfortunately, interviews outside the ED were beyond the resources and scope of the project.

With respect to the rigour criteria, we could not carry out a systematic member checking as we did not have the required resources for such an expensive follow-up. Nevertheless, we have taken extensive measures to ensure confirmation of the integrity of the data.

Conclusions

The FDC presented in this manuscript provides an important and systematic approach to achieve trustworthy qualitative findings. As indicated before, qualitative research credentials have been questioned. However, if the work is done properly based on the suggested tools and techniques described in this manuscript, any work can become a very notable piece of evidence. This study concludes that the FDC is effective; any investigator in emergency medicine research can improve their qualitative research if conducted accordingly.

Important indicators such as saturation levels and inter-coder reliability should be considered in all types of qualitative projects. One important aspect is that by using FDC we can demonstrate that qualitative research is not less rigorous than quantitative methods.

We also conclude that the FDC is a valid framework to be used in qualitative research in the emergency medicine context. We recommend that future research in emergency care should consider the FDC to achieve trustworthy qualitative findings. We can conclude that our method confirms the credibility (validity) and dependability (reliability) of the analysis which are a true reflection of the perspectives reported by the group of participants across different states/territories.

We can also conclude that our method confirms the objectivity of the analyses and reduces the risk for interpretation bias. We encourage adherence to practical frameworks and strategies like those presented in this manuscript.

Finally, we have highlighted the importance of allocating sufficient resources. This is essential if other researchers in emergency care would like to replicate the use of the FDC in the future.

Following papers in this series will use the empirical findings from longitudinal data linkage analyses and the results from the qualitative study to further identify factors associated with ED performance before and after the implementation of the 4HR/NEAT.

Additional files

Appendix 1. Interview form. Text. (PDF 445 kb)

Appendix 2. Codebook NVIVO. Text code. (PDF 335 kb)

Appendix 3. Acknowledgements. Text. (PDF 104 kb)

Acknowledgements

We acknowledge Brydan Lenne who was employed in the preliminary stages of the project, for ethics application preparation and ethics submissions, and her contribution in the planning stages, data collection of the qualitative analysis and preliminary coding of the conceptual framework is appreciated. Fenglian Xu, who was also employed in the initial stages of the project in the data linkage component. Jenine Beekhuyzen, CEO Adroit Research, for consultancy and advice on qualitative aspects of the manuscript and Liz Brownlee, owner/manager Bostock Transcripts services for the transcription of the interviews. Brydan Lenne, Karlene Dickens; Cecily Scutt and Tracey Hawkins who conducted the interviews across states. We also thank Anna Holdgate, Michael Golding, Michael Hession, Amith Shetty, Drew Richardson, Daniel Fatovich, David Mountain, Nick Gibson, Sam Toloo, Conrad Loten, John Burke and Vijai Joseph who acted as site contacts on each State/Territory. We also thank all the participants for their contribution in time and information provided. A full acknowledgment of all investigators and partner organisations is enclosed as an attachment (see Additional file  3 : Appendix 3).

This project was funded by the Australian National Health and Medical Research Council (NH&MRC) Partnership Grant No APP1029492 with cash contributions from the following organisations: Department of Health of Western Australia, Australasian College for Emergency Medicine, Ministry of Health of NSW and the Emergency Care Institute, NSW Agency for Clinical Innovation, and Emergency Medicine Foundation, Queensland.

Availability of data and materials

Abbreviations, authors’ contributions.

RF, GF, SMC made substantial contributions to conception, design and funding of the study. RF, SN, NG, SMC with acquisition of data. RF, SN, JDC for the analysis and interpretation of data. RF, SN, JDC, MM, GF, NG, SMC and PA were involved in drafting the manuscript and revising it critically for important intellectual content and gave final approval of the version to be published. All authors have participated sufficiently in the work to take public responsibility for appropriate portions of the content; and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

As indicated in the background, our study received ethics approval from the respective Human Research Ethics Committees of Western Australian Department of Health (DBL.201403.07), Cancer Institute NSW (HREC/14/CIPHS/30), ACT Department of Health (ETH.3.14.054) and Queensland Health (HREC/14/QGC/30) as well as governance approval from the 16 participating hospitals. All participants received information about the project; received an invitation to participate and signed a consent form and agreed to allow an audio recording to be conducted.

Consent for publication

All the data used from the interviews were de-identified for the analysis. No individual details, images or recordings, were used apart from the de-identified transcription.

Competing interests

RF is an Associate Editor of the Journal. No other authors have declared any competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Qualitative researchers are required to articulate evidence of four primary criteria to ensure the trustworthiness of the study’s findings: credibility, transferability, dependability, and confirmability. 

Credibility (i.e.,  data collected is accurate/representative of the phenomenon under study) 

Credibility corresponds to the notion of validity in quantitative work but is more about internal validity. The credibility of qualitative data can be assured through multiple perspectives throughout data collection to ensure data are appropriate. This may be done through data, investigator, or theoretical triangulation; participant validation or member checks; or the rigorous techniques used to gather the data.  

Transferability (I.e., the extent to which the findings are transferable to other situations) 

Transferability is like generalizability in quantitative; however, it is not generalizability. Transferability addresses the applicability of the findings to similar contexts or individuals not to broader contexts.  Transferability can be achieved by a “thick description” of the findings from multiple data collection methods.   

Dependability (i.e., an in-depth description of the study procedures and analysis to allow the study to be replicated) 

Dependability is like reliability in quantitative studies.  Dependability can be ensured through rigorous data collection techniques and procedures and analysis that are well documented. Typically, an inquiry audit using an outside reviewer assures dependability. For students, this would be your committee.

Confirmability (i.e., the steps to ensure that the data and findings are not due to the participant and/or researcher bias) 

Confirmability is like objectivity in quantitative studies; however, objectivity is not necessarily critical for qualitative studies as long as personal biases are unpacked in the write-up. Unpacking personal bias can be accomplished by a bracketing interview or reflexivity. Confirmability of qualitative data is assured when data are checked and rechecked throughout data collection and analysis to ensure findings would likely be repeatable by others. Confirmability can be documented by a clear coding schema that identifies the codes and patterns identified in analyses. This technique is called an audit trail. It can also be ensured through triangulation and member checking of the data as well as conducting a bracketing interview or practicing reflexivity to confront potential personal bias.        

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How to Achieve Trustworthiness in Qualitative Research

Qualitative research is, by nature, more directional than quantitative research. There is a misguided assumption that qualitative data is somehow inferior, or at least more questionable, than quantitative data derived from market research. It all comes down to rigor in qualitative research, and whether your study meets certain criteria for credibility, dependability, transferability and confirmability.

Qualitative research is, by nature, more directional than quantitative research. Rather than producing facts and figures—like the hard lines of a drawing—it gives color to your customers’ experiences and provides context by exploring the how and why behind concepts or theories in question.

As a result, there is a misguided assumption that qualitative data is somehow inferior, or at least more questionable, than the quality of quantitative data derived from market research.

However, that’s not the case. Qualitative research plays an important role in understanding consumer attitudes and behaviors, measuring brand perceptions, finessing product development efforts, and achieving other goals as you strive to keep up with shifting demands from customers, new competitors and new technologies.

It all comes down to rigor in qualitative research , and whether your study meets certain criteria for credibility, dependability, transferability and confirmability.

How is Qualitative Research Trustworthiness Measured?

Led by Qualitative Research Director, Dawn McElfresh , The Farnsworth Group has been utilizing qualitative research for over 30 years to help clients make more informed strategic decisions.

When it comes to quantitative research, trustworthiness is measured in terms of validity and reliability. You can achieve trustworthiness in qualitative market research by demonstrating that your findings are dependable, credible, confirmable and transferable. Here are how those four concepts are to be understood:

1. Dependability in Qualitative Research

Dependability is used to measure or demonstrate the consistency and reliability of your study’s results. This starts by tracking the precise methods you use for data collection, analysis and interpretation and providing adequate contextual information about each piece, so that the study could theoretically be replicated by other researchers and generate consistent results. An inquiry audit—performed by an outside person—is one tool used to examine the dependability of a qualitative study. Alternatively, screening parameters can be used to solidify research dependability.

The Farnsworth Group demonstrates the dependability of research we conduct by using specific recruitment screener parameters that allow representation from a broad range of demographics, trade criteria, experience, geographic location and so on—so the insights represent the landscape desired by our clients plus aren't representing a slanted viewpoint from one concentrated demographic.

2. Credibility in Qualitative Research

Credibility is a measure of the truth value of qualitative research, or whether the study’s findings are correct and accurate. To some degree, it relies on the credibility of the researchers themselves, as well as their research methods. Triangulation, prolonged engagement with data, persistent observation, negative case analysis, member checks, and referential adequacy are all procedures that can be used to increase the credibility of qualitative studies. 

The Farnsworth Group demonstrates the measure of truth in research we conduct by conducting senior management analysis on the data collected during the in-depth interviews or focus groups. This involves summarizing each detail and finding the overlapping themes that are consistent—which drive the key insights found in the study.  

Our team’s unique combination of decades of industry experience within manufacturing and product development allow us to formulate strategic recommendations; these insights cannot be replicated by other research firms for this reason.

3. Confirmability in Qualitative Research

In terms of confirmability, you want to prove that your qualitative research is neutral and not influenced by the assumptions or biases of the researchers. Rather, trustworthy research should produce findings that objectively reflect information collected from participants. In other words, your data should speak for itself. Confirmability is often demonstrated by providing an audit trail that details each step of data analysis and shows that your findings aren’t colored by conscious or unconscious bias but accurately portray the participants’ responses. 

Confirmability of research conducted by The Farnsworth Group is achieved by our approach of summarizing the content of each question we ask during the in-depth interview or focus group.  This showcases the overlapping themes, without bias, plus all comments heard since they all can provide value to our clients. Qualitative reporting is about the details, and we provide all the color from the interview or focus group, so that the client can view everything without researcher bias.

4. Transferability in Qualitative Research

As the name implies, transferability measures whether, or to what extent, the study’s results are applicable within other contexts, circumstances and settings. It also can be thought of in terms of generalizability. In order to demonstrate transferability in qualitative research, you can utilize thick description, which involves providing adequate details on the site, participants and methods or procedures used to collect data during your study. 

This helps other researchers evaluate whether the results are applicable for other situations. While transferability cannot be proved with 100 percent certainty, you can demonstrate that it is highly likely in order to back up the trustworthiness of your qualitative market research.

What is Thematic Analysis in Qualitative Research?

Not only must the standard trustworthiness of the data collection be high, but the standard of trustworthiness of the interpretation of results must also remain high. Thematic analysis is a foundational and widely used qualitative research method .

Thematic analysis is a flexible and accessible approach to evaluating qualitative data—such as interview transcripts, field notes or other texts—that emphasizes identifying, analyzing and interpreting patterns, meanings and themes. The challenge is that there can be different ways to interpret data, and the researcher is often relied upon to make judgements and take action when it comes to theming, coding and contextualizing the data.

Here is a brief overview of how you can establish trustworthiness within each phase of the thematic analysis process:

1. Familiarize Yourself with the Data

The first step is to establish prolonged engagement with the data and triangulate different data collection modes. Document both reflective thoughts and thoughts about potential themes in the data. Keep records of all raw data and store it in organized archives.

2. Generate Initial Codes or Tally’s

Through peer debriefing, reflexive journaling and researcher triangulation, you have the option to generate initial codes using a reliable coding framework. Alternatively, you can use response tally’s to refer to when conducting qualitative theme analysis.

In any case, be diligent to leave behind an audit trail of this work, which means having documentation of all debriefings and meetings used in the generation process. 

3. Search for Themes and Patterns

During this phase, you will once again utilize triangulation to establish trustworthiness. You can also employ diagramming to track patterns and themes in the data. Maintain detailed notes about the development of certain concepts and themes.

4. Review Your Themes

Team members can help vet themes and subthemes during this phase. You also can return to the raw data to test for referential adequacy.

5. Define and Name Themes

At this point of the process, peer debriefing and researcher triangulation are tools used to establish trustworthiness in qualitative research. Maintaining rigorous documentation is also a key component.

6. Produce the Report

For this phase, you’ll want to provide thick descriptions of the context of your study and details on the process of coding and analyzing the data. This should include justifications for all analytical and methodological choices made throughout the entire study. Here is where you’ll also conduct member checks.

Establishing Trustworthiness in Qualitative Market Research

Qualitative studies are important within the realm of market research. However, in order for the results to be useful and meaningful, you have to take a rigorous and methodical approach to the collection of qualitative data and interpretation of its themes. This is crucial to ensuring that your findings are trustworthy and reliable. 

The Farnsworth Group has the right experience and tools to help you conduct qualitative market research for the building and construction, home improvement, or lawn and ranch industries. You end up with data-driven insights supported by industry expertise that provide you with actionable recommendations.

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• Volume 29, Issue 3
• Rapid reviews methods series: guidance on rapid qualitative evidence synthesis
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• http://orcid.org/0000-0003-4808-3880 Andrew Booth 1 , 2 ,
• Isolde Sommer 3 , 4 ,
• http://orcid.org/0000-0003-4238-5984 Jane Noyes 2 , 5 ,
• Catherine Houghton 2 , 6 ,
• Fiona Campbell 1 , 7
• The Cochrane Rapid Reviews Methods Group and Cochrane Qualitative and Implementation Methods Group (CQIMG)
• 1 EnSyGN Sheffield Evidence Synthesis Group , University of Sheffield , Sheffield , UK
• 2 Cochrane Qualitative and Implementation Methods Group (CQIMG) , London , UK
• 3 Department for Evidence-based Medicine and Evaluation , University for Continuing Education Krems , Krems , Austria
• 4 Cochrane Rapid Reviews Group & Cochrane Austria , Krems , Austria
• 5 Bangor University , Bangor , UK
• 6 University of Galway , Galway , Ireland
• 7 University of Newcastle upon Tyne , Newcastle upon Tyne , UK
• Correspondence to Professor Andrew Booth, Univ Sheffield, Sheffield, UK; a.booth{at}sheffield.ac.uk

This paper forms part of a series of methodological guidance from the Cochrane Rapid Reviews Methods Group and addresses rapid qualitative evidence syntheses (QESs), which use modified systematic, transparent and reproducible methodsu to accelerate the synthesis of qualitative evidence when faced with resource constraints. This guidance covers the review process as it relates to synthesis of qualitative research. ‘Rapid’ or ‘resource-constrained’ QES require use of templates and targeted knowledge user involvement. Clear definition of perspectives and decisions on indirect evidence, sampling and use of existing QES help in targeting eligibility criteria. Involvement of an information specialist, especially in prioritising databases, targeting grey literature and planning supplemental searches, can prove invaluable. Use of templates and frameworks in study selection and data extraction can be accompanied by quality assurance procedures targeting areas of likely weakness. Current Cochrane guidance informs selection of tools for quality assessment and of synthesis method. Thematic and framework synthesis facilitate efficient synthesis of large numbers of studies or plentiful data. Finally, judicious use of Grading of Recommendations Assessment, Development and Evaluation approach for assessing the Confidence of Evidence from Reviews of Qualitative research assessments and of software as appropriate help to achieve a timely and useful review product.

• Systematic Reviews as Topic
• Patient Care

Data availability statement

No data are available. Not applicable. All data is from published articles.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjebm-2023-112620

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WHAT IS ALREADY KNOWN ON THIS TOPIC

Rapid Qualitative Evidence Synthesis (QES) is a relatively recent innovation in evidence synthesis and few published examples currently exists.

Guidance for authoring a rapid QES is scattered and requires compilation and summary.

WHAT THIS STUDY ADDS

This paper represents the first attempt to compile current guidance, illustrated by the experience of several international review teams.

We identify features of rapid QES methods that could be accelerated or abbreviated and where methods resemble those for conventional QESs.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

This paper offers guidance for researchers when conducting a rapid QES and informs commissioners of research and policy-makers what to expect when commissioning such a review.

Introduction

This paper forms part of a series from the Cochrane Rapid Reviews Methods Group providing methodological guidance for rapid reviews. While other papers in the series 1–4 focus on generic considerations, we aim to provide in-depth recommendations specific to a resource-constrained (or rapid) qualitative evidence synthesis (rQES). 5 This paper is accompanied by recommended resources ( online supplemental appendix A ) and an elaboration with practical considerations ( online supplemental appendix B ).

Supplemental material

The role of qualitative evidence in decision-making is increasingly recognised. 6 This, in turn, has led to appreciation of the value of qualitative evidence syntheses (QESs) that summarise findings across multiple contexts. 7 Recognition of the need for such syntheses to be available at the time most useful to decision-making has, in turn, driven demand for rapid qualitative evidence syntheses. 8 The breadth of potential rQES mirrors the versatility of QES in general (from focused questions to broad overviews) and outputs range from descriptive thematic maps through to theory-informed syntheses (see table 1 ).

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Glossary of important terms (alphabetically)

As with other resource-constrained reviews, no one size fits all. A team should start by specifying the phenomenon of interest, the review question, 9 the perspectives to be included 9 and the sample to be determined and selected. 10 Subsequently, the team must finalise the appropriate choice of synthesis. 11 Above all, the review team should consider the intended knowledge users, 3 including requirements of the funder.

An rQES team, in particular, cannot afford any extra time or resource requirements that might arise from either a misunderstanding of the review question, an unclear picture of user requirements or an inappropriate choice of methods. The team seeks to align the review question and the requirements of the knowledge user with available time and resources. They also need to ensure that the choice of data and choice of synthesis are appropriate to the intended ‘knowledge claims’ (epistemology) made by the rQES. 11 This involves the team asking ‘what types of data are meaningful for this review question?’, ‘what types of data are trustworthy?’ and ‘is the favoured synthesis method appropriate for this type of data?’. 12 This paper aims to help rQES teams to choose methods that best fit their project while understanding the limitations of those choices. Our recommendations derive from current QES guidance, 5 evidence on modified QES methods, 8 13 and practical experience. 14 15

This paper presents an overview of considerations and recommendations as described in table 2 . Supplemental materials including additional resources details of our recommendations and practical examples are provided in online supplemental appendices A and B .

Recommendations for resource-constrained qualitative evidence synthesis (rQES)

Setting the review question and topic refinement

Rapid reviews summarise information from multiple research studies to produce evidence for ‘the public, researchers, policymakers and funders in a systematic, resource-efficient manner’. 16 Involvement of knowledge users is critical. 3 Given time constraints, individual knowledge users could be asked only to feedback on very specific decisions and tasks or on selective sections of the protocol. Specifically, whenever a QES is abbreviated or accelerated, a team should ensure that the review question is agreed by a minimum number of knowledge users with expertise or experience that reflects all the important review perspectives and with authority to approve the final version 2 5 11 ( table 2 , item R1).

Involvement of topic experts can ensure that the rQES is responsive to need. 14 17 One Cochrane rQES saved considerable time by agreeing the review topic within a single meeting and one-phase iteration. 9 Decisions on topics to be omitted are also informed by a knowledge of existing QESs. 17

An information specialist can help to manage the quantity and quality of available evidence by setting conceptual boundaries and logistic limits. A structured question format, such as Setting-Perspective-Interest, phenomenon of-Comparison-Evaluation or Population-Interest, phenomenon of-Context helps in communicating the scope and, subsequently, in operationalising study selection. 9 18

Scoping (of review parameters) and mapping (of key types of evidence and likely richness of data) helps when planning the review. 5 19 The option to choose purposive sampling over comprehensive sampling approaches, as offered by standard QES, may be particularly helpful in the context of a rapid QES. 8 Once a team knows the approximate number and distribution of studies, perhaps mapping them against country, age, ethnicity, etc), they can decide whether or not to use purposive sampling. 12 An rQES for the WHO combined purposive with variation sampling. Sampling in two stages started by reducing the initial number of studies to a more manageable sampling frame and then sampling approximately a third of the remaining studies from within the sampling frame. 20

Sampling may target richer studies and/or privilege diversity. 8 21 A rich qualitative study typically illustrates findings with verbatim extracts from transcripts from interviews or textual responses from questionnaires. Rich studies are often found in specialist qualitative research or social science journals. In contrast, less rich studies may itemise themes with an occasional indicative text extract and tend to summarise findings. In clinical or biomedical journals less rich findings may be placed within a single table or box.

No rule exists on an optimal number of studies; too many studies makes it challenging to ‘maintain insight’, 22 too few does not sustain rigorous analysis. 23 Guidance on sampling is available from the forthcoming Cochrane-Campbell QES Handbook.

A review team can use templates to fast-track writing of a protocol. The protocol should always be publicly available ( table 2 , item R2). 24 25 Formal registration may require that the team has not commenced data extraction but should be considered if it does not compromise the rQES timeframe. Time pressures may require that methods are left suitably flexible to allow well-justified changes to be made as a detailed picture of the studies and data emerge. 26 The first Cochrane rQES drew heavily on text from a joint protocol/review template previously produced within Cochrane. 24

Setting eligibility criteria

An rQES team may need to limit the number of perspectives, focusing on those most important for decision-making 5 9 27 ( table 2 , item R3). Beyond the patients/clients each additional perspective (eg, family members, health professionals, other professionals, etc) multiplies the additional effort involved.

A rapid QES may require strict date and setting restrictions 17 and language restrictions that accommodate the specific requirements of the review. Specifically, the team should consider whether changes in context over time or substantive differences between geographical regions could be used to justify a narrower date range or a limited coverage of countries and/or languages. The team should also decide if ‘indirect evidence’ is to substitute for the absence of direct evidence. An rQES typically focuses on direct evidence, except when only indirect evidence is available 28 ( table 2 , item R4). Decisions on relevance are challenging—precautions for swine influenza may inform precautions for bird influenza. 28 A smoking ban may operate similarly to seat belt legislation, etc. A review team should identify where such shared mechanisms might operate. 28 An rQES team must also decide whether to use frameworks or models to focus the review. Theories may be unearthed within the topic search or be already known to team members, fro example, Theory of Planned Behaviour. 29

Options for managing the quantity and quality of studies and data emerge during the scoping (see above). In summary, the review team should consider privileging rich qualitative studies 2 ; consider a stepwise approach to inclusion of qualitative data and explore the possibility of sampling ( table 2 , item R5). For example, where data is plentiful an rQES may be limited to qualitative research and/or to mixed methods studies. Where data is less plentiful then surveys or other qualitative data sources may need to be included. Where plentiful reviews already exist, a team may decide to conduct a review of reviews 5 by including multiple QES within a mega-synthesis 28 29 ( table 2 , item R6).

Searching for QES merits its own guidance, 21–23 30 this section reinforces important considerations from guidance specific to qualitative research. Generic guidance for rapid reviews in this series broadly applies to rapid QESs. 1

In addition to journal articles, by far the most plentiful source, qualitative research is found in book chapters, theses and in published and unpublished reports. 21 Searches to support an rQES can (a) limit the number of databases searched, deliberately selecting databases from diverse disciplines, (b) use abbreviated study filters to retrieve qualitative designs and (c) employ high yield complementary methods (eg, reference checking, citation searching and Related Articles features). An information specialist (eg, librarian) should be involved in prioritising sources and search methods ( table 2 , item R7). 11 14

According to empirical evidence optimal database combinations include Scopus plus CINAHL or Scopus plus ProQuest Dissertations and Theses Global (two-database combinations) and Scopus plus CINAHL plus ProQuest Dissertations and Theses Global (three-database combination) with both choices retrieving between 89% and 92% of relevant studies. 30

If resources allow, searches should include one or two specialised databases ( table 2 , item R8) from different disciplines or contexts 21 (eg, social science databases, specialist discipline databases or regional or institutional repositories). Even when resources are limited, the information specialist should factor in time for peer review of at least one search strategy ( table 2 , item R9). 31 Searches for ‘grey literature’ should selectively target appropriate types of grey literature (such as theses or process evaluations) and supplemental searches, including citation chaining or Related Articles features ( table 2 , item R10). 32 The first Cochrane rQES reported that searching reference lists of key papers yielded an extra 30 candidate papers for review. However, the team documented exclusion of grey literature as a limitation of their review. 15

Study selection

Consistency in study selection is achieved by using templates, by gaining a shared team understanding of the audience and purpose, and by ongoing communication within, and beyond, the team. 2 33 Individuals may work in parallel on the same task, as in the first Cochrane rQES, or follow a ‘segmented’ approach where each reviewer is allocated a different task. 14 The use of machine learning in the specific context of rQES remains experimental. However, the possibility of developing qualitative study classifiers comparable to those for randomised controlled trials offers an achievable aspiration. 34

Title and abstract screening

The entire screening team should use pre-prepared, pretested title and abstract templates to limit the scale of piloting, calibration and testing ( table 2 , item R11). 1 14 The first Cochrane rQES team double-screened titles and abstracts within Covidence review software. 14 Disagreements were resolved with reference to a third reviewer achieving a shared understanding of the eligibility criteria and enhancing familiarity with target studies and insight from data. 14 The team should target and prioritise identified risks of either over-zealous inclusion or over-exclusion specific to each rQES ( table 2 , item R12). 14 The team should maximise opportunities to capture divergent views and perspectives within study findings. 35

Full-text screening

Full-text screening similarly benefits from using a pre-prepared pretested standardised template where possible 1 14 ( table 2 , item R11). If a single reviewer undertakes full-text screening, 8 the team should identify likely risks to trustworthiness of findings and focus quality control procedures (eg, use of additional reviewers and percentages for double screening) on specific threats 14 ( table 2 , item R13). The Cochrane rQES team opted for double screening to assist their immersion within the topic. 14

Data extraction

Data extraction of descriptive/contextual data may be facilitated by review management software (eg, EPPI-Reviewer) or home-made approaches using Google Forms, or other survey software. 36 Where extraction of qualitative findings requires line-by-line coding with multiple iterations of the data then a qualitative data management analysis package, such as QSR NVivo, reaps dividends. 36 The team must decide if, collectively, they favour extracting data to a template or coding direct within an electronic version of an article.

Quality control must be fit for purpose but not excessive. Published examples typically use a single reviewer for data extraction 8 with use of two independent reviewers being the exception. The team could limit data extraction to minimal essential items. They may also consider re-using descriptive details and findings previously extracted within previous well-conducted QES ( table 2 , item R14). A pre-existing framework, where readily identified, may help to structure the data extraction template. 15 37 The same framework may be used to present the findings. Some organisations may specify a preferred framework, such as an evidence-to-decision-making framework. 38

Assessment of methodological limitations

The QES community assess ‘methodological limitations’ rather than use ‘risk of bias’ terminology. An rQES team should pick an approach appropriate to their specific review. For example, a thematic map may not require assessment of individual studies—a brief statement of the generic limitations of the set of studies may be sufficient. However, for any synthesis that underpins practice recommendations 39 assessment of included studies is integral to the credibility of findings. In any decision-making context that involves recommendations or guidelines, an assessment of methodological limitations is mandatory. 40 41

Each review team should work with knowledge users to determine a review-specific approach to quality assessment. 27 While ‘traffic lights’, similar to the outputs from the Cochrane Risk of Bias tool, may facilitate rapid interpretation, accompanying textual notes are invaluable in highlighting specific areas for concern. In particular, the rQES team should demonstrate that they are aware (a) that research designs for qualitative research seek to elicit divergent views, rather than control for variation; (b) that, for qualitative research, the selection of the sample is far more informative than the size of the sample; and (c) that researchers from primary research, and equally reviewers for the qualitative synthesis, need to be thoughtful and reflexive about their possible influences on interpretation of either the primary data or the synthesised findings.

Selection of checklist

Numerous scales and checklists exist for assessing the quality of qualitative studies. In the absence of validated risk of bias tools for qualitative studies, the team should choose a tool according to Cochrane Qualitative and Implementation Methods Group (CQIMG) guidance together with expediency (according to ease of use, prior familiarity, etc) ( table 2 , item R15). 41 In comparison to the Critical Appraisal Skills Programme checklist which was never designed for use in synthesis, 42 the Cochrane qualitative tool is similarly easy to use and was designed for QES use. Work is underway to identify an assessment process that is compatible with QESs that support decision-making. 41 For now the choice of a checklist remains determined by interim Cochrane guidance and, beyond this, by personal preference and experience. For an rQES a team could use a single reviewer to assess methodological limitations, with verification of judgements (and support statements) by a second reviewer ( table 2 , item R16).

The CQIMG endorses three types of synthesis; thematic synthesis, framework synthesis and meta-ethnography ( box 1 ). 43 44 Rapid QES favour descriptive thematic synthesis 45 or framework synthesis, 46 47 except when theory generation (meta-ethnography 48 49 or analytical thematic synthesis) is a priority ( table 2 , item R17).

Choosing a method for rapid qualitative synthesis

Thematic synthesis: first choice method for rQES. 45 For example, in their rapid QES Crooks and colleagues 44 used a thematic synthesis to understand the experiences of both academic and lived experience coresearchers within palliative and end of life research. 45

Framework synthesis: alternative where a suitable framework can be speedily identified. 46 For example, Bright and colleagues 46 considered ‘best-fit framework synthesis’ as appropriate for mapping study findings to an ‘a priori framework of dimensions measured by prenatal maternal anxiety tools’ within their ‘streamlined and time-limited evidence review’. 47

Less commonly, an adapted meta-ethnographical approach was used for an implementation model of social distancing where supportive data (29 studies) was plentiful. 48 However, this QES demonstrates several features that subsequently challenge its original identification as ‘rapid’. 49

Abbrevations: QES, qualitative evidence synthesis; rQES, resource-constrained qualitative evidence synthesis.

The team should consider whether a conceptual model, theory or framework offers a rapid way for organising, coding, interpreting and presenting findings ( table 2 , item R18). If the extracted data appears rich enough to sustain further interpretation, data from a thematic or framework synthesis can subsequently be explored within a subsequent meta-ethnography. 43 However, this requires a team with substantial interpretative expertise. 11

Assessments of confidence in the evidence 4 are central to any rQES that seeks to support decision-making and the QES-specific Grading of Recommendations Assessment, Development and Evaluation approach for assessing the Confidence of Evidence from Reviews of Qualitative research (GRADE-CERQual) approach is designed to assess confidence in qualitative evidence. 50 This can be performed by a single reviewer, confirmed by a second reviewer. 26 Additional reviewers could verify all, or a sample of, assessments. For a rapid assessment a team must prioritise findings, using objective criteria; a WHO rQES focused only on the three ‘highly synthesised findings’. 20 The team could consider reusing GRADE-CERQual assessments from published QESs if findings are relevant and of demonstrable high quality ( table 2 , item R19). 50 No rapid approach to full application of GRADE-CERQual currently exists.

Reporting and record management

Little is written on optimal use of technology. 8 A rapid review is not a good time to learn review management software or qualitative analysis management software. Using such software for all general QES processes ( table 2 , item R20), and then harnessing these skills and tools when specifically under resource pressures, is a sounder strategy. Good file labelling and folder management and a ‘develop once, re-use multi-times’ approach facilitates resource savings.

Reporting requirements include the meta-ethnography reporting guidance (eMERGe) 51 and the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement. 52 An rQES should describe limitations and their implications for confidence in the evidence even more thoroughly than a regular QES; detailing the consequences of fast-tracking, streamlining or of omitting processes all together. 8 Time spent documenting reflexivity is similarly important. 27 If QES methodology is to remain credible rapid approaches must be applied with insight and documented with circumspection. 53 54 (56)

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1

Correction notice Since this paper first published, updates have been made to the left hand column of table 2.

Contributors All authors (AB, IS, JN, CH, FC) have made substantial contributions to the conception and design of the guidance document. AB led on drafting the work and revising it critically for important intellectual content. All other authors (IS, JN, CH, FC) contributed to revisions of the document. All authors (AB, IS, JN, CH, FC) have given final approval of the version to be published. As members of the Cochrane Qualitative and Implementation Methods Group and/or the Cochrane Rapid Reviews Methods Group all authors (AB, IS, JN, CH, FC) agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests AB is co-convenor of the Cochrane Qualitative and Implementation Methods Group. In the last 36 months, he received royalties from Systematic Approaches To a Successful Literature Review (Sage 3rd edition), honoraria from the Agency for Healthcare Research and Quality, and travel support from the WHO. JN is lead convenor of the Cochrane Qualitative and Implementation Methods Group. In the last 36 months, she has received honoraria from the Agency for Healthcare Research and Quality and travel support from the WHO. CH is co-convenor of the Cochrane Qualitative and Implementation Methods Group.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; internally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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• Open access
• Published: 28 May 2024

Standardized patients’ experience of participating in medical students’ education: a qualitative content analysis

• Banafsheh Ghorbani   ORCID: orcid.org/0000-0002-3063-2418 1 ,
• Alun C. Jackson 2 , 3 , 4 ,
• Nahid Dehghan-Nayeri 5 &
• Fatemeh Bahramnezhad   ORCID: orcid.org/0000-0002-2015-0204 6 , 7  

BMC Medical Education volume  24 , Article number:  586 ( 2024 ) Cite this article

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Standardized patients are considered a significant educational method in medical sciences and have been successfully employed for many years. This study was conducted with the aim of explaining the experience of standardized patients participating in the education of medical student.

A qualitative content analysis approach was used. This study was conducted at Standardized Patient Center, Tehran University of Medical Sciences, Tehran, Iran, May to February 2022. Fifteen standard patients were selected through purposive sampling with maximum variation. Semi-structured, in-depth, face-to-face interviews were conducted with standard patients. The average duration of the interviews was 60 to 90 min. Data were transcribed and analyzed using the Graneheim and Lundman approach.

A passport for the future and duality of feelings were the two main themes identified in this study with six subthemes. One of the main themes was passport for the future with subthemes creative, participation in educating future generation, reflection and another theme was duality of feeling with subthemes feeling of value, guilty conscience, and fear of judgment by others.

The participants expressed having mixed feelings about their role as standard patients. They felt conflicted because they were compensated for their participation, which made them worry about being judged by others and feel guilty about taking the fee. Therefore, it is recommended to conduct further studies in this area.

Peer Review reports

Medical education has evolved over many years, shifting its focus towards simulation-based training. The introduction of simulation into the realm of medical education has transformed the paradigm from lecture-based teaching and evaluation to practice-oriented learning [ 1 ]. Today, the ability to communicate effectively with patients and other healthcare professionals has gained significant importance [ 2 ]. SPs are people who have received special training to accurately convey the story of a patient in such a way that even experienced healthcare professionals would not be able to distinguish them from real patients [ 3 ]. Essentially, they embody all the physical and psychological characteristics of actual patients, providing learners with a holistic understanding of patient care [ 4 ]. These individuals are frequently employed in health sciences education to promote the development of communication skills and other essential competencies. They are capable of consistently reflecting a wide range of scenarios [ 5 , 6 ].

In addition, frequent engagements with SPs accompanied by constructive feedback and self-reflection contribute the continued improvement of students’ performance [ 7 , 8 , 9 ]. The use of SPs allows learners to acquire various skills, including motivational interviewing, interpersonal communication, clinical note-taking, collaboration among healthcare professionals, and exposure to uncommon patient scenarios, thus enabling students to interact with patients in a safer environment while broadening their skillset [ 5 , 10 ].

Apart from the advantages mentioned above, research has shown that utilizing SPs in healthcare education offers numerous benefits. Students exhibit consistently favorable attitudes towards SPs, and their use results in increased learning, improved communication skills, heightened confidence, and better psychomotor performance [ 5 , 11 , 12 ]. Additionally, SPs can serve as an effective tool in augmenting students’ cultural competency training [ 13 ]. SPs present a fair and equitable means of evaluating students’ clinical performance since each case repetition is presented to learners in a standardized format [ 14 , 15 ]. To ensure the optimal utilization of SPs and maximum benefit for students, it is essential for educators to provide adequate support for SPs. This may involve preparing them in areas such as role-play, assessment, and feedback, with faculty supervision playing a significant role. Ultimately, successful implementation of the SPs approach depends on providing appropriate resources and guidance to those involved in the process [ 16 ]. Although SPs play a pivotal role in the during the many years that the student is learning, ignoring their requests can lead to complications in their collaboration with students and educators. SPs have various demands that must be addressed to ensure their active participation, such as being heard and understood without judgment by students, teachers, and other team members, as well as receiving empathy and support. It is critical to acknowledge and accommodate the requests of SPs to facilitate effective collaboration and maximize the benefits of their involvement in healthcare education [ 17 , 18 ]. If the interaction between a student and a service provider fails to consider important factors such as gender ethnicity, and religion, difficulties in establishing a positive and productive relationship may be encountered [ 19 , 20 ].

The profession of being a standardized patient is still emerging, and gaining a deeper understanding of the people who work in this complex and continually evolving role can help students develop a better understanding of patients and learn important processes in a safe environment. As a result, this contributes to the growth and advancement of SPs as a professional group [ 1 , 21 , 22 ]. The researcher found out about SPs’ concerns and based on that, he decided to find out about their experience of being SPs. In the search, very few studies were found about the experience of these people. The purpose of using SPs is to enhance students’ practical skills and prepare them for real-life clinical situations by providing opportunities for interaction. This study seeks to gain insight into the experiences and perspectives of SPs, with the aim of improving the learning process and its outcomes.

It is important to acknowledge and understand both the visible and hidden aspects of the experiences of individuals involved in the education of medical science students, especially SPs. Qualitative research is an effective method for identifying and exploring these issues. The purpose of this study was to explore the experiences of SPs who participate in the education of medical science students.

Study design

In this qualitative study, Graneheim and Lundman’s (2004) [ 23 ] conventional content analysis approach was used to explain the experiences of SPs. This is further explained in the following section on data analysis.

Participants

A total of fifteen SPs from the Standardized Patient Center, Tehran University of Medical Sciences, Tehran, Iran consented to take part in the study who were eligible to participate. Participants were purposeful selected to take part in the study. The first of participants was recommended to the researcher by the head of the SP center. Inclusion criteria consisted of willingness to participate, ability to communicate experiences in Farsi, and a minimum of 6 months’ experience as a SP.

Data collection

Key informants were purposefully sampled from among the SPs collaborating with the Tehran University of Medical Sciences Research and Development Center, Tehran, Iran, May to February 2022. The objectives and methods of the study were explained to the participants, including ensuring them of the confidentiality of their information. Written and verbal informed consent was obtained from each participant before their participation in the study. In-depth, semi-structured interviews were conducted at a time and place arranged according to the participant’s request. Most interviews took place in the corresponding author’s office, while two interviews were conducted at the Clinical Skills Center as per the participant’s preference. All the researchers involved in this study conducted the review and analysis of the interviews. The interviews continued until data saturation was achieved, meaning that no new information or codes emerged from the last two interviews. During the analysis of the final interviews, it was found that no additional data was included in the study that would lead to the development, modification, enlargement, or addition to the existing theory. As a result, no new category appeared and the categories remained unchanged. The primary focus of the interviews revolved around the individuals’ experiences as SPs in the student education process, so the interviews commenced with the question: “What is your experience as an SP in the student education process?” What does he think when he uses you as an SP? What are your challenges? Probing questions were used to clarify concepts based on the information provided by the participants. Each interview lasted approximately 60 to 90 min. The interviews were conducted in Persian. They began with warm-up questions, followed by the main questions and probing inquiries. At the end of each interview, participants were asked if there were any remaining topics they wished to discuss, and were thanked for their participation.

Data analysis

The qualitative content analysis approach developed by Graneheim and Lundman (2004) [ 23 ] was employed to analyze the data. The process involved several steps, including identifying meaning units, condensing them, assigning codes, establishing subthemes and themes, and identifying overarching themes. The interviews were transcribed with each transcription being thoroughly reviewed multiple times to gain a comprehensive understanding of the content. Subsequently, a line-by-line analysis was conducted to identify the meaning units, which were then condensed and labeled with appropriate codes. These codes were further grouped into subthemes based on their similarities and differences. By bringing similar subthemes together, broader themes were formed, ultimately leading to the emergence of thematic patterns that conveyed the underlying meaning within the text. Throughout this process, all the researchers conducting the fieldwork engaged in discussions and evaluations of the themes and subthemes.

It is important to note that both explicit content analysis and latent content analysis were conducted in this process to extract the final themes. Additionally, constant comparison analysis, a key approach in qualitative text analysis, was utilized. The extracted themes and sub-themes were consistently compared and reviewed with each other and with the written narratives.

The first author conducted and transcribed the interviews. She then conducted the coding, which was later reviewed by the first author. In cases of conflicting opinions, the second and third authors would share their perspectives and collectively decide on the codes.

The study’s rigor was evaluated using Lincoln and Guba’s criteria [ 24 ], which consists of credibility, dependability, confirmability, transferability, and authenticity.

Credibility : the interview text and codes were shared with participants for feedback on accuracy and validity. Any discrepancies were addressed and investigated. Additionally, the researcher clarified unclear cases or misunderstood participant meanings through phone calls and emails.

Dependability: all interviews were recorded and transcribed, and the coding and data analysis were reviewed by the entire research team. Additionally, an external professor evaluated a subset of interviews to ensure the quality of coding.

Confirmability: it was ensured by providing a comprehensive description of the data, allowing external observers to evaluate and understand the research process. Fourthly, transferability was enhanced by employing maximum variation sampling, accurately describing the participants, sampling methods, and the time and location of data collection. This increased the potential applicability of the findings to other contexts.

Transferability: it was addressed by obtaining informed consent from all participants, fostering trust, clarifying the research method to participants and the audience, and making the research report available to both respondents and the wider audience.

Ethical considerations

The current study was approved with ethics code (IR.TUMS.MEDICINE.REC.1400.1346) by the Ethics Committee at Tehran University of Medical Sciences. The objectives and methods used in the study were fully explained to the participants, assuring them about the confidentiality of the shared information and maintaining their anonymity. Additionally, the aim of using audio recording was explained to the participants, and they were reassured that participation in the study is optional, with the freedom to withdraw at any time.” Also, written and verbal informed consent was obtained from each participant before their participation in the study.

Based on the demographic characteristics, the mean age ± sd of the participants in this study was 41.23 ± 16.8. The age range of the participants in the study was 16–66 years. Other demographic characteristics are listed in Table  1 .

Based on the analysis of the data two themes were emerged, “Passport for the Future” and “Duality of Feeling” with six subthemes (Table  2 ).

Passport for the future

Passport for the Future, consisted of three subthemes: “Creativity,” “Participation in Educating Future Generations,” and “Reflection.” The participants emphasized their responsibility in creating an environment that enables medical science students to develop confidence in their skills before they enter the clinical setting. They believed that their activities were essential in ensuring the future success of these students as healthcare professionals. By using patient simulators, students could reflect on their actions, make decisions, and adjust their approaches without the pressure or fear of causing harm to real patients. This enabled students to take breaks from practical work, review their activities, engage in discussions with teachers and peers, and then continue their tasks. The participants considered their role in educating students as crucial and foundational, providing a stepping stone for their progression in clinical education. Collaborating with these participants allowed students to effectively handle various scenarios, utilizing the ample time available for thinking and even exploring innovative strategies in managing the clinical environment.

The participants in the study indicated that interacting with a real person who can communicate effectively motivates individuals to go above and beyond to help solve problems. This interaction also provides students with the opportunity to exercise critical thinking skills, fostering creativity and enabling them to find logical and accurate solutions to their issues.

Participant number 3, who had been acting as a patient simulator for two years and three months, stated:

“ I’ve seen many times that the student has enough time to learn how to manage the environment with their own approach. For example, they learn how to speak with a patient who has a taboo disease. I remember a student came to talk to me when I was playing the role of a patient with AIDS, to talk and take a history. I remember I was supposed to try to hide my disease. The student was persistent at first, using everything they knew to get me to talk, but was not successful. In the end, they figured out what to say to me to make me open up.”

Participation in educating future

The participants emphasized that they play a crucial role in evaluating students, assisting clinical professors in determining whether a student should progress to a higher level based on their performance in interactions with SP. They viewed their own performance as integral to the student’s advancement and competence assessment, believing that without their input, professors may struggle to make accurate judgments about a student’s abilities. They asserted that they are among the key decision-makers involved in determining a student’s promotion and qualification.

“ I’m happy because if a student passes me, they can get a passing grade ,“(Participant 8).

In fact, the participants believed that when a student interacts with them in the process of education and evaluation, their stress levels is high. This is because it is not like the clinical environment where the person knows they are interacting with a patient. On the other hand, the patient is seen as a human being and not just a mannequin that does not interact back. Therefore, the student is placed on a path where they have the opportunity to rethink their performance, calmly assess it, and review it. When the student interacts with the patient and observes their reaction, they can reflect on their own way of dealing with a human being, which aids in their learning.

In this regard, one of the participants shared the following experience:

“ One day, a student entered the room and did not greet me. He immediately started reading from a script and bombarding me with questions. I simply looked at him for a few moments and then responded to his questions with complete indifference. I didn’t even make eye contact with him. It’s worth mentioning that my behavior was intentional. I wanted to teach the student that their patient is a human being and they should respect this relationship. By establishing a good rapport, you can gather valuable information from the patient.” The student looked at me and said, “I’m sorry, I didn’t greet you. I now realize my behavior was inappropriate .“(Participants 11).

Duality of feeling

“Duality of Feeling,” encompassed three subthemes: “Feeling of Value,” “Guilty Conscience,” and “Fear of Judgement by Others.” Participants expressed conflicting emotions within this theme. On one hand, they felt a sense of importance and value when considering their role in facilitating students’ learning and supporting their educational journey. However, there was also a prevailing feeling of guilt because participants received payment for their involvement in the educational process. They believed that as educators, they should contribute without monetary compensation. Nonetheless, financial needs compelled them to accept payment for their services. Furthermore, participants shared concerns about the perception others might have if they found out about receiving payment. They feared being seen as financially needy or from a lower social class, leading to a diminished sense of worth. Consequently, they preferred to keep their involvement and compensation a secret. The worry about how students perceived them consistently occupied their thoughts.

Feeling of value

The feeling of being a valuable member of the teaching process is important to them.They believe that their involvement in education medical, nursing, and midwifery students is significant. Knowing that they are contributing to the development of future healthcare professionals and ultimately helping patients makes them feel valued and appreciated.

On the other hand, participant number 10, a 21-year-old woman who had been working as a standard patient for three years, remarked:

“ It’s a great feeling to know that you’re contributing to something. I always think that I have as much right to the students as the teacher does. When I play the role of a patient, it helps the information stick better in their minds, and this gives me confidence.”

Fear of judgment by others

One of the concerns expressed by participants in this study was the fear of being judged by others. They mentioned that receiving money for this work might lead others to believe that they are financially needy individuals who are allowing themselves to be examined or play certain roles. This perception made them feel conflicted, as they did not want anyone to know about their participation in this activity. In fact, they preferred to keep this aspect of their lives hidden. At times, they even feared that their peers would view them differently, leading to negative emotions.

In this regard, participant number 11, who was 66 years old and entered this process after retirement, said:

“When I retired, due to the respiratory problem I had and the fact that I also have rheumatism, I couldn’t do heavy work. On the other hand, my retirement pension was not enough. My niece, who was in this line of work, told me about it but asked me not to tell anyone, as they would think I entered this line of work out of misery.”

Guilty conscience

They expressed a desire to be involved in the education process, but due to their circumstances, they receive payment for their participation. They believe that education is a sacred act and should not involve financial compensation. They would prefer to receive a salary, but their economic situation forces them to accept payment, which makes them feel guilty.

Participant number 2 shared their thoughts on the matter, stating:

“ I always feel uneasy about being paid to teach students. But I have no choice due to my financial needs. If I were in a better financial position, I would never accept payment because education is a shared responsibility and should not be monetized. The satisfaction of educating others is rewarding enough for me. I don’t want money to be a factor in how I live my life, and it troubles me .”

In interpreting the experience of SPs participating in the education of medical science students, two main themes with six subthemes were revealed. “A Passport to the Future,” with subthemes “Creativity,” “Participation in Nurturing the Next Generation,” and “Reflection” was emerged in this study, Participants stated that the work they do serves as a bridge for students to reach a brighter future, and they see themselves as playing a crucial role in this educational approach.

According to a study conducted by Peisachovich et al. in 2016, the utilization of SPs has been found to enhance various skills such as communication, idea exchange, clinical expertise, and management abilities. This study also highlighted the positive impact of SPs on reflection and competence development [ 25 ]. Similarly, Lashley et al. in 2009 demonstrated that the use of SPs contributes to improved problem-solving, decision-making, and scene management skills [ 26 ]. Another study by Kameg et al. in 2010 confirmed the effectiveness of SPs in enhancing communication skills [ 27 ]. Doolen et al.‘s research in 2014 revealed that student skills and learning related to real patient interactions were significantly enhanced through the use of SPs [ 28 ]. Okinyi et al. in 2022 observed that targeted communication with patients, proper interviewing techniques for HIV patients, and effective management and evaluation of the environment were achieved through the use of SPs [ 29 ]. Blumling et al.‘s study in 2018 focused on the initial assessment of partner satisfaction. It concluded that SPs increased students’ proficiency in communication, history taking, and knowledge needed for real-world healthcare scenarios [ 30 ]. Slater et al. in 2016 found that the utilization of SPs not only boosted students’ self-confidence but also had a significant impact on cognitive, emotional, and psychomotor learning. Students expressed that practicing with SPs better prepared them for real-world patient encounters and enhanced their performance [ 31 ]. Burrell et al.‘s study in 2021 involving nursing students reported high levels of satisfaction, self-confidence, and preparedness for clinical practice when using SPs [ 32 ]. An earlier study found that the use of SPs significantly reduced students’ anxiety and improved their scene management skills, ultimately enhancing their ability to provide care [ 33 ].

As with the present study, that study identified a duality of feelings among SPs, including a sense of value, guilt, and fear of judgment from others. SPs create a safe and supportive environment where students can apply theoretical and clinical skills. Jarosinski et al.‘s study in 2016 revealed that fulfilling the role of SPs instilled a sense of value, joy in goal-oriented actions, and a feeling of being part of the educational team. SPs believed they could provide valuable training to students as mentors [ 34 ]. However, Fluet et al.‘s study in 2022 highlighted that SPs became aware of students’ judgments and prejudices when playing certain roles related to sexual orientation or drug addiction. Factors such as gender and ethnicity also influenced their experiences as SPs, and organizational biases contributed to a fear of judgment [ 35 ]. The use of SPs in curricula has been widely recognized for creating a dynamic learning environment. It allows instructors to introduce realistic scenarios aligned with learning objectives, control the learning environment, provide feedback, and facilitate the integration of theory and practice through guided explanation and reflection processes [ 25 ]. The use of SPs effectively simulates various clinical problems that students may encounter, providing a safe space for learning.

Implications for practice

A crucial implication of these findings for clinical practice is the necessity of providing students with adequate education to ensure safe patient care. By providing support to SPs and empathically addressing their needs and emotions, healthcare professionals can deliver improved services. Moreover, SPs play a pivotal role in offering educational services to students, aiding in their optimal learning and development.

Recommendations

It is crucial to emphasize the importance and preserve the human dignity of individuals who participate as SP in educational settings. This approach benefits both the SPs and the students involved in the learning process. To begin with, educating SPs about their significant role helps them understand that they are valued contributors within the education system. By emphasizing their importance, they can develop a sense of fulfillment and purpose in helping train future healthcare professionals. Recognizing their impact can also boost their confidence and motivate them to actively engage in the educational process. It is also equally vital to educate students about the value and significance of the SPs ‘s role. Students should be taught to appreciate and respect the SPs as an essential part of their learning experience. This includes understanding that the SPs ‘s participation and reflection contribute to their growth as healthcare practitioners. Teaching students to respect the SPs involves fostering empathy, communication skills, and professionalism. They should learn how to interact with the SPs in a compassionate and respectful manner. This includes active listening, showing empathy, seeking consent, maintaining privacy and confidentiality, and treating the SPs with dignity throughout their interactions. Furthermore, incorporating reflective exercises and discussions into the curriculum can help students recognize the perspectives and experiences of SPs. This cultivates a deeper understanding and appreciation of the challenges they may face while participating in medical education. By emphasizing the importance of the SPs’s role and teaching students to respect and value their contributions, we establish a positive and inclusive learning environment. This approach promotes empathy, professionalism, and ethical behavior among students, preparing them to provide high-quality care while upholding the dignity and well-being of all patients they encounter in their future career.

One of the most significant limitations of this study was the unwillingness of the SPs to be interviewed. They believed that sharing their experiences could increase negative perceptions towards them. In this context, they were reassured that their information would remain entirely confidential and they agreed to be interviewed. Also, despite the researcher’s efforts, three individuals who played the roles of people with sexual problems were not willing to be interviewed under any circumstances. On this basis, it is recommended that researchers design studies on the experiences of SPs who play roles with sexual disorders. Also, studies should be designed to enhance their role and provide support for them.

The studies highlight the important role of incorporating SPs in healthcare education due to their numerous advantages in terms of skill development, confidence building, anxiety reduction, scene management improvement, and the creation of a realistic learning environment. Over the past few decades, the use of SPs in the healthcare industry has greatly expanded for skill development and assessment purposes. These simulated patients now play diverse roles, representing various characteristics found in the patient population such as different ages, genders, socio-economic backgrounds, physical and mental illnesses, and distinct personality types. It is crucial to have awareness on how to effectively utilize this method and collaborate with SPs. This involves providing systematic and well-planned education, ensuring successful outcomes for teachers, coaches, and SPs actors. Furthermore, SPs also serve as expert educators, emphasizing the need to consider their work environment and satisfaction with participation in education programs. Developing accurate clinical scenarios based on theory, implementing systematic education programs focused on the role and function of SPs, creates favorable conditions for employing this approach. Ultimately, this contributes to enhancing professional competence and improving the quality of clinical evaluation within the medical and health sciences field.

During the interviews, no findings were found that cultural or gender differences (considering the context of Iran being Islamic) cause a different experience in standardized patients (SPs). Regarding the use of SPs at Tehran University of Medical Sciences, the process is as follows: if a professor makes a written request, the desired SP will be introduced to the standardized patient center of the university, and the scenarios will be explained to the SP by the professor. For each scenario, the SP is charged a fee by the standardized patient center. SPs in Iran do not have a fixed salary, so it is suggested that these individuals should be considered for a job with a fixed salary.

Data availability

This study are not publicly available due to their qualitative nature but are available from the corresponding author on reasonable request.

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Acknowledgements

This research was conducted at the Education Development Center, Medical Science Education Research Center, Tehran University of Medical Sciences, Iran (No: 1400-3-255-47028).

The authors hereby express their gratitude to all the participating in this study.

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Nursing department, Student Research Committee, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran

Banafsheh Ghorbani

Australian Centre for Heart Health, Melbourne, Australia

Alun C. Jackson

Faculty of Health, Deakin University, Geelong, Australia

Centre on Behavioural Health, Hong Kong University, Sandy Bay, Hong Kong, China

Department of Nursing Management, Nursing and Midwifery Care Research Center,School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran

Nahid Dehghan-Nayeri

Department of Critical Care Nursing, Nursing and Midwifery Care Research Center, School of Nursing & Midwifery, Tehran University of Medical Sciences, Tehran, Iran

Fatemeh Bahramnezhad

School of Nursing and Midwifery, Tehran University of Medical Sciences, Nosrat st, Tohid sq, Tehran, I.IRAN141973317, Iran

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The study was designed and conceived by F.B. Data collection, analysis, and synthesis performed by BGh and F.B. Manuscript did by B.GH, F.B, N.N, ACJ. Critical revisions for important intellectual content provided by ACJ The study supervised by FB and NDNsubmitted the manuscript. All authors read and approved the final manuscript.

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Correspondence to Fatemeh Bahramnezhad .

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Ethical approval and consent to participate.

This study was carried out in accordance with the Declaration of Helsinki and approved by the Ethics Committee at Tehran University of Medical Sciences(IR.TUMS.MEDICINE.REC.1400.1346). The objectives and methods used in the study were fully explained to the participants, assuring them about the confidentiality of the shared information and maintaining their anonymity. Additionally, the aim of using audio recording was explained to the participants, and they were reassured that participation in the study is optional, with the freedom to withdraw at any time.” Written and verbal informed consent was obtained from each participant before their participation in the study.

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Ghorbani, B., Jackson, A.C., Dehghan-Nayeri, N. et al. Standardized patients’ experience of participating in medical students’ education: a qualitative content analysis. BMC Med Educ 24 , 586 (2024). https://doi.org/10.1186/s12909-024-05531-x

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Received : 28 October 2023

Accepted : 07 May 2024

Published : 28 May 2024

DOI : https://doi.org/10.1186/s12909-024-05531-x

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BMC Medical Education

ISSN: 1472-6920

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• Published: 28 May 2024

Parental experiences of caring for preterm infants in the neonatal intensive care unit, Limpopo Province: a descriptive qualitative study exploring the cultural determinants

• Madimetja J. Nyaloko 1 ,
• Welma Lubbe 1 ,
• Salaminah S. Moloko-Phiri 1 &
• Khumoetsile D. Shopo 1  

BMC Health Services Research volume  24 , Article number:  669 ( 2024 ) Cite this article

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Metrics details

Parent-infant interaction is highly recommended during the preterm infant hospitalisation period in the Neonatal Intensive Care Unit (NICU). Integrating culturally sensitive healthcare during hospitalisation of preterm infants is critical for positive health outcomes. However, there is still a paucity of evidence on parental experience regarding cultural practices that can be integrated into preterm infant care in the NICU. The study explored and described the cultural determinants of parents that can be integrated into the care of preterm infants in the NICU.

A descriptive qualitative research design was followed where twenty ( n =20) parents of preterm infants were purposively selected. The study was conducted in the NICU in Limpopo using in-depth individual interviews. Taguette software and a thematic analysis framework were used to analyse the data. The COREQ guidelines and checklist were employed to ensure reporting standardisation.

Four themes emerged from the thematic analysis: 1) Lived experienced by parents of preterm infants, 2) Interactions with healthcare professionals, 3) Cultural practices concerning preterm infant care, and 4) Indigenous healthcare practices for preterm infants.

Conclusions

The study emphasised a need for healthcare professionals to understand the challenges parents of preterm infants face in NICU care. Furthermore, healthcare professionals should know indigenous healthcare practices to ensure relevant, culturally sensitive care.

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Introduction and background

Parenting is an intricate process involving the upbringing and caring for a child from infancy to adulthood through promoting and supporting the child’s physical, emotional, social, and intellectual development [ 1 ]. This process becomes challenging, particularly when it involves preterm infants admitted to the hospital [ 2 ]. The birth of a preterm infant can be an epoch-making, evocative, and occasionally devastating parental experience [ 3 ]. A preterm infant is defined as a child born before the 37 th week of pregnancy is completed [ 4 ]. Annually, approximately 15 million preterm births are documented out of 160 million live births, accounting for an 11.5% global preterm birth rate [ 5 ]. Between 2010 and 2020, more than 60% of global preterm births occurred in South Asia and Sub-Saharan Africa [ 5 ]. One in every seven infants in South Africa was born before their due date and required NICU admission [ 5 ].

The NICU is typically a foreign and intimidating environment for parents, due to the need for continuous monitoring and medical intervention for infants who are fragile and sick. Parents can experience stress, guilt, anxiety, and sadness due to the infant's uncertain health prognosis [ 6 ]. The active involvement of parents in preterm infant care activities in the NICU is crucial for infant developmental outcomes [ 7 ]. Healthcare professionals should comprehend the parental experience of caring for a preterm infant in the NICU to address parental needs and enhance parent-infant interaction and attachment [ 8 ]. This interaction may in turn increase parental satisfaction, thus promoting more appropriate parent-infant interaction, including attachment and bonding [ 9 ].

Although parent-infant interaction is beneficial, cultural variables need to be acknowledged. Parenting is deeply rooted in a culture characterized by ideologies concerning how an individual should act, feel and think as an in-group member [ 10 ]. Therefore, the parental involvement and parent-infant interaction might be disrupted if the parental cultural practice is not considered. Cultural practices influence the parents' infant care approach [ 11 , 12 ]. The values and ideals of culture are conveyed to the next generation through child-rearing practices, which implies that cultures are contextually sensitive parenting guidelines [ 13 ].

Parents of preterm infants in Limpopo Province, South Africa, come from various cultural backgrounds, which may influence how they understand and react to the care provided to their preterm infant in the NICU. Various childrearing practices associated with culture influence the health of preterm infants [ 14 ]. These practices include massaging the baby, applying oil to the eyes and ears, burping the baby, applying black carbon to the eyes, and trimming the nails. Parental involvement in preterm infant care in the NICU may also be influenced by culture [ 15 ]. The cultural views and ideas of healthcare professionals can potentially affect the standard of care offered to preterm infants and their parents in the NICU. These cultural views and ideas are health beliefs that explain the cause of illness, its prevention or treatment methods, and the appropriate individuals who should participate in the healing process [ 16 ].

Healthcare professionals who have a comprehensive understanding of the parental cultural determinants can facilitate the nurturing and promoting of adequate parental-infant care and interaction, which is the foundation for developing preterm infants [ 17 ]. Lack of support from healthcare professionals regarding the cultural aspects of parent-infant interaction may negate parents' cultural practices, and increase negative perceptions and dissatisfaction with the healthcare service provided in the NICU [ 17 ]. Consequently, this may result in a lack of parental awareness or responsiveness to the infant, associated with delayed infant cognitive development and multiple behavioural problems [ 18 ].

Despite the recognition of the importance of parental involvement in NICU care and the documented emotional challenges experienced by parents, there is a gap in the literature regarding the specific experiences and cultural practices of parents caring for preterm infants which can be integrated in NICU in settings, such as Limpopo Province in South Africa. The province has seen a significant increase in the number of newborn babies weighing under 2,500 grams in recent years [ 19 ]. The study aimed to explore and describe the cultural determinants of parents that can be integrated into the care of preterm infants admitted to the NICU in Limpopo Province to ensure culturally sensitive care. This study is unique due to its focus on South Africa, specifically Limpopo Province, which is the centre of cultural practices due to its rurality. The main research question was: 'What are the cultural determinants which influence the parental experience that can be integrated into the care of preterm infants in the NICU in Limpopo Province?

The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was followed to ensure standardisation in reporting the study type, design, execution, analysis, and results [ 20 ].

The study applied a qualitative research design following a descriptive approach [ 21 ]. In-depth individual interviews were used to explore and describe the experiences of parents of preterm infants admitted to the NICU in Limpopo Province through a cultural determinant lens.

The current study was conducted in the NICU of a tertiary hospital in Limpopo Province, South Africa. Limpopo Province was selected based on two grounds: 1) Cultural practices are more evident in rural villages than in semi-urban or urban settings [ 22 ], 84.2% of the study population live in rural areas [ 23 ]; and 2) one in every seven infants is born before its due date in South Africa [ 5 ], the Limpopo Province accounts for high preterm birth rates [ 19 ].

Participants and sample

The population comprised mothers of a preterm infant admitted to the NICU. For this study, a parent was defined as the mother of a preterm infant in the NICU. Purposive sampling was used to select twenty ( n =20) participants from the NICU in a tertiary hospital [ 24 ]. The inclusion criteria required that 1) the participant be the parent of a preterm infant; 2) the parent had a preterm infant in the NICU for a minimum of two weeks (As set out by the researcher, the contextually relevant time for an immersive experience was two weeks); 3) the parent be able to speak either Sepedi, Xitsonga, Tshivenda, or English (the common local languages). Mothers of preterm infants who were in critical condition were excluded. There were no refusals to participate. The sample size was determined based on data saturation, which was reached with n =20 participants [ 25 ].

Recruitment

The first author (Ph.D.) and an independent person recruited the participants face-to-face by distributing recruitment material such as flyers and asynchronously by displaying posters on the noticeboards in the selected hospital's NICU and a place where the mother lodge in the hospital. Recruitment was conducted after ethical approvals and permission from the hospital were granted. Participants who expressed interest in the study notified the first author through a phone call, SMS, or WhatsApp text message. The first author then contacted the potential participants to provide detailed information regarding the study aim and data collection method, including audio recordings of interviews, confidentiality agreements, written informed consent, and voluntary participation. Potential participants who showed interest were given an informed consent form and a minimum of 48 hours to consult and inform their partners or family members. The first author was accessible telephonically for any clarity-seeking questions. The first author contacted the agreed participants to schedule the hospital-based interviews on the agreed-upon dates. All consented mothers participated and there were no withdrawals.

Data collection

The interview guide was developed for this current study in English, and translated to local languages (Sepedi, Xitsonga, and Tshivenda) by assistant researchers who are fluent with these respective languages. Three bilingual speakers (Sepedi, Xitsonga, and Tshivenda) checked the translations from English to these local languages for accuracy, which was endorsed. Furthermore, the interview schedule was piloted with two participants to assess its effectiveness and suitability (See supplementary document 1). Pilot study was instrumental in refining the interview guide and ensuring that it would yield the desired data during the primary study. The in-depth interview began with an open-ended question, as shown in Table 1 below.

The data was collected between August and September 2022. In-depth individual interviews were conducted by the first author and assistant researcher using Sepedi, Xitsonga, Tshivenda, or English in a private room in the hospital to ensure confidentiality. COVID-19 precautionary measures were followed to protect the health and safety of participants and interviewers. Furniture was wiped with a 70% based-alcohol solution before and after each interview, chairs were spaced 1.5 meters apart to ensure adequate social distance and researchers and participants sanitised their hands before entering and exiting the room. Participants and the interviewer wore a surgical facial mask covering the nose and mouth throughout the interview.

The first author served as the lead interviewer, the assistant researcher functioned as a support system in case of a language barrier. The interviews were conducted in the participant's preferred language (Sepedi, Xitsonga, Tshivenda, or English). The interviewer used probing questions to encourage the participants to elaborate, and all other questions arose from the dialogue. The duration of each interview was between 45 and 65 minutes.

With the participants' permission, two audio recording devices were used to record each interview, whereby one served as a backup in case the main one defaulted. During each interview, the first author compiled field notes regarding the context, non-communication cues, and impressions to complement the recorded audio. Data collection continued until no new data emerged, whereby data saturation was declared. All the interviews were conducted at the hospital.

After data collection, the first author and assistant researchers transcribed the data verbatim, including field notes in English. The researchers' subjective experiences regarding the explored phenomenon were described to avoid influencing data analysis: a process termed bracketing [ 26 ]. Three bilingual speakers (Sepedi, Xitsonga, and Tshivenda) checked the translations to English transcriptions for accuracy against the audio recordings. Additionally, two transcripts (10% of the sample) were back translated, and accuracy was verified by an independent co-coder and two co-authors [SSM, KDS]. No substantial linguistic issues were identified during the translation process.

Data analysis

Giorgi's data analysis method [ 27 , 28 ] was applied to comprehend the essence of the experiences of parents of preterm infants in the NICU. The data analysis process constituted five steps: understanding raw data, constructing a constituent profile, forming a theme index, merging participants' theme indexes, and searching the thematic index to develop interpretive themes.

Trustworthiness

The four criteria of Lincoln and Guba [ 29 ] were applied to establish the trustworthiness of the current study. Credibility was established by member checking with 10% of the sample ( n =2) by sending the transcript and developed themes. The supervisors (experts) conducted a confirmability audit of the study project by checking and rechecking the collected raw-, coded- and interpreted data to affirm neutrality. Additionally, the study followed a rigorous descriptive qualitative method and underwent a peer review process that confirmed the consistency of the data, and the findings ensured dependability, while data saturation and a detailed description of the methodology ensured transferability.

Demographic data

Twenty ( n =20) mothers of preterm infants admitted to the NICU in a tertiary hospital participated in this study. The participants’ ages ranged from 18 to 39 years, with the majority being between 18 and 25. The majority of parents had three children. Regarding education, nine participants had a secondary-level education, and 11 had a tertiary education. Of the 20 participants, nine were unemployed, two were self-employed, one was fully employed, one was employed part-time, and seven were students (Refer to Table 2 ).

Emerging themes and sub-themes

Four main themes emerged from the data analysis. These were: lived experienced by parents of preterm infants, interactions with healthcare professionals, cultural practices concerning preterm infant care, and indigenous healthcare practices for preterm infants. These themes, supported by sub-themes, are outlined in Table 3 .

Theme 1 lived experienced by parents of preterm infants

The current study's first theme emerged as the lived experienced by parents of preterm infants. Parents experienced considerable challenges while caring for the preterm infants in the NICU. Lived difficulties experiences by parents are further explored through the sub-themes: stress and exhaustion, and longing for home.

Sub-theme 1.1 stress and exhaustion

Participants felt an overwhelming sense of exhaustion and stress, as they cared for their infants in the NICU. Participant responses revealed a pervasive fear of the unknown, coupled with emotional turmoil and physical strain. The uncertainty surrounding the health of their infants exacerbates their distress, leading to heightened anxiety and feelings of helplessness. This emotional burden is compounded by the challenges of navigating complex medical information and coping with unexpected health complications. Participants expressed shock, describing the unexpected event of preterm birth and the overwhelming emotions following the delivery of a preterm infant.

One participant reported:

We are always scared when we go to see babies because we don't know what it is, especially when you leave the baby without the tube; you think she may vomit when you are not around, and the next thing you will be receiving a call saying your baby is no more. (P1, 18-year-old)

Participant 1's expression of fear illustrates the constant apprehension experienced by mothers in the NICU, highlighting the emotional strain of anticipating potential emergencies and adverse outcomes. Another participant indicated the overwhelming uncertainty faced by the mothers upon entering the NICU, emphasizing the need for clear communication and reassurance from healthcare providers. The following quote supports the participant’s experience:

What if they tell me the situation is like this when I enter there? Honestly speaking, it frightens us. We just wish that it didn't ring so that when you get there, they tell you that they needed you so and so . (P2, 25-year-old)

Another participant highlighted the shock and fear induced by the sight of an extremely premature infant, illustrating the emotional toll of witnessing their vulnerability.

This baby, she was too small, like it was the first time seeing a small child like this. I once saw premature, but it was not like this, this one was so small, so I was scared. (P4, 24-year-old)

Another participant described her emotional response to distressing news about her baby's health which underscores the profound impact of medical uncertainties on maternal well-being, emphasizing the need for sensitive communication and support.

When they told me that my baby was like this and this, I even cried. (P10, 39-year-old)

Additionally, other participant’s narrative reflected the overwhelming fear and uncertainty experienced by mothers in the NICU, highlighting the emotional toll of constantly anticipating adverse outcomes and navigating complex medical situations. The following quotes reflect the participants’ experiences:

What I'm dealing with, because I was very broken and did not know what it is, will the baby survive, what will she do, what's going to happen. The answer is not right, as, for us, we are always afraid, we don't know what it is when you are here. (P17, 23-year-old)

Sub-theme 1.2 longing for home

The emotional strain and challenges faced by mothers while caring for their infants in the hospital setting evoke a profound yearning for the sense of security, comfort and belonging that home provides. The participants described their experience of not getting enough rest and sleep while caring for their preterm infant in the NICU which would not happen if they were home. Contributing factors include the time required to visit the NICU for the infant’s care routine, time spent walking from the mother's lodge to the NICU and back, and the separation of mother and infant.

The participant reflected on the contrast between hospital practices and what would have been done if she were at home:

Yes, here in the hospital, they want you to bathe the baby like this while at home they want you to do this and this or at home, you would do this when you see him doing that. It's things I want to know. (P5, 38-year-old)

This quote encapsulates the longing for the familiar routines and comforts of home amidst the unfamiliarity of hospital protocols. It highlights the sense of control and autonomy associated with home, where individuals adhere to their own customs and practices, as opposed to the regulated environment of the hospital. Another participant reminisces about cultural practices that would have been observed in her home environment:

Yeah, like mostly, like back at home, in our culture, we believe that a baby less than a month old must be bathed by the mother or grandmother... If I was at home, I will be feeding her with soft porridge without giving her any medications because this medication makes her defecate twice a day or so and this makes her lose weight. (P7, 32-year-old)

This excerpt emphasises the role of cultural traditions and familial support in shaping caregiving practices. It underlines the interconnectedness between home and cultural identity, where adherence to traditional customs provides a sense of security and belonging, particularly in the context of new-born care. Furthermore, another participant described the traditional approach to newborn care back home:

No, after birth when I come home, we don’t bathe the baby right away, we dampen the cloth in lukewarm water and just wipe the baby where he is dirty. We wash the head because the hair traps a lot of dirty things (blood and birth secretions), we avoid the full bath so that we don’t expose the baby to flu. (P18, 20-year-old)

Other participants compared hospital feeding methods with traditional practices at home. The participants reported that:

Here we feed the baby with breast milk using pipes (NG tubes and syringes) but at home, we do a light and very soft porridge. (P16, 38-year-old)

This comparison highlights the adaptation to different environments and the longing for familiar routines. It shows how home serves as a sanctuary where individuals adhere to their preferred methods of infant care, reinforcing the notion of home as a place of comfort and familiarity. Other participants expressed a longing for the comforts of home and the familiar routines:

So, the first challenge is that we wake up. We only sleep two hours. Most of the time we spend on the way, we do not have time to rest. Like when you are going that way, you may find that you are going for a long time in the baby’s room. When you are coming here, and you try to sleep, time is gone, you must go back. (P14, 39-year-old)

This statement reflects the desire for a sense of normalcy and routine amidst the challenges of hospitalisation. It highlights the idea that home represents a heaven of rest and recuperation, where individuals can adhere to their preferred practices and routines, particularly during significant life events such as childrearing.

Theme 2 interactions with healthcare professionals

In this study, interaction is perceived as communication and involvement in preterm infant care among healthcare professionals and parents of preterm infants in the NICU. The sub-themes included NICU care, communication, and healthcare professional attitudes.

Sub-theme 2.1 care in NICU

This sub-theme concerns how healthcare professionals cared for preterm infants and their parents in the NICU. Some indicated that they received adequate care from nurses and doctors in the NICU.

One participant indicated that:

The doctors are mostly here; they used to come only to check and update [us] about the baby's condition. The people who take part mostly are the nurses. Okay, looking at the ICU there is no problems, all is right. (P02, 25-year-old)

A similar view was echoed by another participant who stated:

Yes, they help me take care of the baby, and the doctors are nearby if there is something the doctor and nurses can help with. (P13, 22-year-old)

Another participant shared that she had only seen good things and is at peace with the care that she is receiving in the NICU:

In [N]ICU I have not seen any bad things; I only noticed the good things. My baby was in troubles, but she is not well, nurses are checking her every time so does the doctors. So up to so far, I never had any problems with nurses and doctors. I am at peace. (P18, 20-year-old)

However, one participant expressed dissatisfaction with the care she received in the NICU. The following quote confirms this:

They end up swearing at us and to be treated this way, been shouted, it ends up affecting our minds since I already have a problem with my baby’s condition. (P12, 28-year-old)

The participants’ responses highlight that they experienced positive and negative care while looking after their preterm infants in NICU; it appears that they appreciated the care, although some were unhappy.

Sub-theme 2.2 communication in NICU

Nearly all parents mentioned the importance of healthcare professionals practising effective communication as clinicians. In this context, communication is the exchange of information between parents of preterm infants and healthcare professionals in the NICU. The parents indicated that they had experienced satisfactory communication with healthcare professionals while caring for their preterm infant in the NICU. This includes comprehensive explanations; for instance, the doctor offered information regarding the baby's weight decrease in terms that parents could comprehend, giving them relief. The following quotes support the experience:

Yes, is not it that when we come here, we are under stress? So, if we want to say sister (nurse), may I ask, how is my baby doing? She can answer me; if she does not know, she must go and ask or tell me that I do not know about this one. I can ask someone who knows, like have good communication. (P17, 23-year-old)

Yes, the same doctor that I ask him regarding the baby’s weight loss. He explained to me well and now I understand, am free because the weight is no longer 0.8 kg, it is now around 1.0 kg. The support is good because when you ask something they quickly actioned it, so there is support. (P18, 20-year-old)

The above participants highlighted the importance of efficient communication in interactions between parents and healthcare professionals in the NICU and its positive effects on parents’ experiences and well-being. Nevertheless, other participants expressed dissatisfaction with the communication they received from the healthcare professionals in the NICU. One of the cited reasons for their dissatisfaction was that healthcare professionals discussed the infant's condition in a language the parents did not understand.

One participant mentioned that:

They asked me if I knew why my baby went to the theatre? What is the reason he came here? I said yes; I just heard them saying it is the authority which I do not know what they meant. (P06, 23-year-old)

Similarly, other participants expressed disappointment that healthcare professionals were not informing them about the interventions/procedures before implementation. The following quotes support the parental disappointment:

We do want to know because when we arrive in the ward, we just see that intravenous lines were inserted, and blood sample were collected, and we also see that the infant was pricked several times on the extremities hence do not even know where the samples are taken to. (P16, 38-year-old)

It is the same as when he was in high care because after labour, my baby was sent to high care, and the next morning he was in ICU without informing me. (P19, 23-year-old)

Moreover, another participant mentioned feeling confused because of the conflicting communication from healthcare professionals. The following quote supports this confusion:

The other one enters tells you the baby should change sides and give you reasons. When you tell them one said I should not change sides, they end up swearing at us end up confusing us. (P12, 28-year-old)

Participants highlighted the negative impact that poor communication could have on their experience in the NICU, as well as the significance of simple and consistent communication with healthcare professionals. They expressed a desire for precise, reliable information to understand what was happening to their preterm infants and to feel more involved in the care of their infants.

Sub-theme 2.3 attitude of healthcare professionals in NICU

The participants in the study expressed dissatisfaction with the attitudes of healthcare professionals in the NICU, as illustrated by the two quotes below:

When you go to the nurse and tell her that the tube is disconnected from the baby and the secretions are coming out through the nose, so the response will be like, what do you want me to do because your baby did that (mother rolling the eyes)? (P01, 18-year-old)

Okay there was this nurse who was on a night shift yesterday and she was busy with files, and when we wanted to ask her to collect some of the things for us, and she would say to us that we must go collect those things for ourselves because she is busy. So, when we got there to collect for ourselves, we found another nurse who asked us as to where our nurse is because we should not be doing this for ourselves. So, when we called her, she showed to me that she does not like her job. (P08, 31-year-old)

Another participant further mentioned that:

There is a nurse that seemed to have an advanced age, whenever we ask her to assist our babies, or asking some supplies to help our babies she is rude. She once told me that [my] babies are ugly such like me. (P20, 19-year-old)

More so, some mothers lamented the lack of communication from the nurses. For example

Their communication is not good because they hide things from us, sometimes you will find that they had taken your baby’s blood and not tell you about the results or what the results implies, and even when you ask the nurses, they would tell you that they are doing what they have been instructed to do. Sometimes you also find your baby inserted with drip, and when you ask, they do not say or explain the reason for all of these. (P08, 31-year-old)

Even though other participants expressed their dissatisfaction regarding the attitude of the healthcare professionals, other participants felt the opposite. One participant mentioned that she had a satisfactory relationship with the healthcare professionals expressed in the quote:

I am pleased with how the hospital is providing her with milk, yes, I am happy they help. (P12, 28-year-old)

Similarly, another participant added that she has only observed good things concerning the level of service provided to her infant:

In [N]ICU I haven’t seen any bad things; I only noticed the good things. (P18, 20-year-old)

Most parents expressed satisfaction with the level of support provided by the healthcare professionals in the NICU. The participants describe the support as encouraging and helping them to understand that challenges are a normal part of the process, as indicated by the below quotes:

Yes, their support is good. It is the kind of support that encourages you to understand that things like this are there and there are these kinds of challenges. (P07, 32-year-old)

Additionally, another participant alluded that:

The support from the nurses is very good, each one of them know me because I have been here for a long time. When they arrive, they call and ask how is the baby [doing]? Initially it was scary because my baby was the smallest one in the unit, and I was new but now am used to the nurses and the unit. (P18, 20-year-old)

Theme 3 cultural practice concerning preterm infant care

The third main theme was the cultural practices concerning preterm infant care. This study's concepts associated with this theme include practices and behaviours conducted after childbirth. This includes the infant naming practice, infant access restrictions, family involvement, and religious practice observance.

Sub-theme 3.1 infant naming by senior family members

Participants indicated that they adhere to the cultural practices of naming the preterm infant after birth. These cultural practices include understanding who is responsible for naming the infant, introducing the infant to the ancestors, and the meaning associated with the name given. The quotes show that senior family members, particularly grandmothers, are responsible for naming the infant and performing ancestral veneration to introduce the infant to the ancestors after birth.

One participant shared that:

If the granny [was] still alive, she [would be] the right [person] to appoint my parent to name the infant. (P02, 25-year-old)

Another participant supported the preceding statement by stating:

Well, when I call them at home regarding the name, my grandmother would want her name to be passed down to the child. (P08, 31-year-old)

The above data highlight that the grandmothers are responsible for naming the infants. This is because naming a preterm infant in Limpopo Province is culturally associated with the practice of ancestral communication, which grandmothers perform. Furthermore, one participant indicated that the infants are named based on various events in life. The following quotation illustrates this:

Because they used a dead person's name, so they are informing the owner of the name that there is someone who will use it. (P02, 25-year-old)

The above quote highlights the belief that a preterm infant is given the name of a deceased person to keep their memory alive and to ensure the continuation of a family legacy. Also, ancestral communication rituals should be performed to inform the name's owner. In addition, another participant indicated that infant naming is culturally essential and that a misnamed infant will continuously cry. The following quotation evidences this belief:

They do that; for example, they can call a baby by name like Sara, and if the baby stops crying, it means that is the name she wanted. And these things happen because they can call her by her name; the baby then stops crying and is healed instantly. (P01, 18-year-old)

The above data suggest that naming a preterm infant may positively affect the infant’s health and well-being when culturally informed. The beliefs and practices related to naming a preterm infant reflect the cultural values and traditions of the parents, which are essential considerations in providing culturally sensitive care in the NICU.

Sub-theme 3.2 infant access restrictions

Participants indicated that everyone is not permitted access to the room where the preterm infant is kept. Access restrictions include funeral attendees, pregnant women and individuals who recently engaged in sexual activities. The following section further explores how participants perceived these restricted individuals as harmful to the infant through a cultural lens based on their experiences during preterm infant care. A common experience for many participants was that individuals who participated in funeral services should perform cultural rituals with ashes and some aloes when entering, as illustrated in the following quotes.

They [those attended the funeral] enter the baby's room, they bath the baby with aloe and ashes a little bit and even on the joints so that she must never get sick. (P01, 18-year-old)

Usually, when they are from a funeral, they take ashes, apply them to the baby and make her swallow a bit of it so that they do not suppress her. (P02, 25-year-old)

An additional participant concurred with the preceding participants and elaborated that:

According to culture all babies from newborn to a child aged 6 to 7, when one person at home goes to the funeral, when that person comes back home takes ashes and rub it on the tummies of all these age group so that none of them can get suppressed or have negative auras. (P20, 19-year-old)

The data highlight the cultural belief that there are diseases and negative auras that can be acquired from funeral services and that precautionary measures must be taken to prevent the spread of these harmful elements to the preterm infant. In addition to the precautionary measures highlighted above, other participants explained that people who attend funerals should be isolated from the infant for some period before regaining access to the infant's room, as illustrated by the two quotes below:

I am staying with my grandmother, but if they are from the funeral, it means only I will nurse the baby. They will take seven days without entering the baby's room. (P04, 24-year-old)

She [person attended the funeral] must stay there for seven days before she returns, and after that, she can come back and help me with the baby. (P11, 27-year-old)

The above quotes indicate that isolating individuals who attended the funeral service for seven days will allow the acquired diseases and negative auras from the funeral to clear up and minimize the chances of transmission to the infant. Pregnant women were the second restriction. The following quotes illustrate beliefs and practices surrounding the presence and interactions of preterm infants and pregnant women:

Traditionally, we think she will suppress the baby. If a pregnant person carries the baby, she will delay the baby's growth. You find that at around six months, the baby is still unable to sit, so they believe it is because a pregnant person carried the baby. She is not supposed to enter the baby's room until the baby gets out. (P02, 25-year-old)

Another participant said:

If someone is pregnant, she is not supposed to hold a baby in such a way that the legs of the baby are on [her-pregnant woman] abdomen because we believe that if the baby's legs are stepping on top of the pregnant person's abdomen, the baby won't walk until the pregnant woman give birth, she will wait for the unborn baby to be born before she can walk. (P01, 18-year-old)

The first quote highlights the complete restriction of pregnant women from gaining access to the infant due to the negative impact (slow growth) that she can have on the infant. However, the second quote indicated that a pregnant woman can be granted access to the infant’s room and can even carry the infant, although with precautions not to allow the infant’s leg to come in contact with the abdomen. Through this analysis, it becomes clear that cultural beliefs and practices play a substantial role in shaping the experiences of pregnant women and their interaction with preterm infants. The final restriction was holding the infant after sexual intercourse. Most participants revealed a common belief that sexual intercourse could lead to the transfer of a negative aura to the infant. The following quote exemplifies this belief:

When the cord has not yet fallen, my grandmother is the only person who is allowed to enter because she has passed that stage of sexual intercourse. The rest of them are not allowed because we are trying to avoid negative aura to be passed on to the child, and if that happen, he will cry a lot. So, no one is allowed except my grandmother. (P08, 31-year-old)

Other participants stated, in support of the preceding statement:

They [siblings] might be coming from their partners and you would find that they were intimate in a way, so their energies will affect the baby negatively. (P09, 30-year-old)

Because they [grandmothers] do not have sexual intercourse anymore and they have experience. Culturally, it is believed that people who had sexual intercourse had negative aura. (P16, 38-year-old)

The data suggest that the role of grandmothers in caring for preterm infants is essential and safe as they are free of negative energies due to their age, experience, and abstinence from sexual intercourse. Furthermore, the data highlights that individuals who engage in sexual intercourse bring negative auras to the baby and are, therefore, not allowed to be in close proximity to the newborn. This cultural practice aims to ensure the well-being and health of the preterm infant by avoiding contact with individuals who have recently engaged in sexual intercourse.

Sub-theme 3.3 family involvement

Cultural practices concerning preterm infant care restrict infant access and allow family members to assist in caring for the infant. The following quotations illustrate participants' experience regarding family involvement while caring for the infant.

One participant stated that:

When I am here, the nurses help me, which is the same when you are at home. There is no difference. (P11, 27-year-old)

Another participant expressed a similar view:

It is very important because when you get help as a new mom you also get time to rest, in my family they would bathe the infant and massage you. (P12, 28-year-old)

In support of the above participants, another participant added that:

At home it is better because we have people who are assisting us, and we have time to rest (P16, 38-year-old)

The conclusion that can be drawn from these findings is that the involvement of family members in caring for the infant enabled the mothers to rest rather than continuously caring for the infant alone, which may be exhausting.

Sub-theme 3.4 religious practices observance/beliefs

In context of this study, most parents were religious and observed religious practices in terms of prayer and using ditaelo (church prescriptions - the church practices believed to be effective in curing the patient and preventing misfortune). This is connected to the belief that their infants would be protected from illness and be healthy, parents would be strengthened, and healthcare professionals would be granted wisdom to care for the infants. Most parents prayed to God for their preterm infant to get better and be healed. The following quotes illustrate this:

I just thought my baby is going to die but because God is present, I prayed I got baby boy. Now I thank God because of my faith and even the doctors had confidence that the baby will be okay. (P18, 20-year-old)

I pray every time I go to the ward for God to give her life and when I leave, I do not know what they will do to her, to not be affected when a lot of activities are done to her body. (P02, 25-year-old) Furthermore, parents also prayed for themselves and drew strength from their spiritual anchor to overcome the challenges they experienced while caring for their preterm infant in the NICU.

I have a way of overcoming my fears and sadness through prayer so that I can be able to receive strength . (P11, 27-year-old)

Other participants also highlighted this. For example, one participant indicated that:

When I am down, I pray for 2 minutes and ask God for strength. Then after, I feel okay. (P02, 25-year-old)

Moreover, participants did not only pray for themselves and their infants but also for healthcare professionals to have wisdom while caring for their infants. The following quotes demonstrate this intercession:

I believe that is the reason I prayed, because evil spirits can block the doctors view for them not see anything. (P12, 28-year-old)

Until now I just pray to God to give wisdom to doctors so that they treat my baby well then, I can go home. (P18, 20-year-old)

Lastly, one participant believed that prayer is more effective when performed in person, in the presence of others, rather than done alone. The participant stated that:

I prefer that when I pray, I must be there with two or more people because the prayer becomes more powerful when you are many. (P11, 27-year-old)

These findings highlights that the communal aspect of religious practices is vital for some individuals and that they believe that the power of prayer is amplified when performed with others. The quotes in this analysis indicate that the participants view prayer as connecting with a higher power, seeking strength, wisdom, and healing for themselves and the preterm infant in their care. Another aspect of religious practice, observance/practice called ditaelo , was also used to protect their infants from evil spirits and heal them.

Theme 4 indigenous healthcare practices for preterm infants

The final theme from the data analysis was “indigenous healthcare practices for preterm infants,” which parents described as the beliefs, knowledge, and habits about health passed down from generation to generation in a specific community. This theme is further explored through the following four subthemes.

Sub-theme 4.1 cultural practices used for cleaning the umbilical cord

Most participants believed that the indigenous care method for the umbilical cord is a vital cultural practice related to preterm infant care. Although the participants used surgical spirit in the NICU, they expressed the practices of using various herbal formulations that they would like to incorporate in the NICU during umbilical cord care. The following quotes reflect this.

I take table salt with that powdered wood soot and apply it [umbilical cord] on the cord every time you bathe the baby until it dries. (P10, 39-year-old)

We took soil from termite mound, chickens’ manure and placed them there for it to fall. (P12, 28-year-old)

Additionally, the same view was echoed by other participants, explaining that:

The herbs will shrink the cord, which will eventually fall off. After that, they will give you herbs to spread over the cord area, which will help the cord to close from inside. I was using the ashes to mix with Vaseline, then spread the mixture over the cord. (P15, 32-year-old)

We clean the cord with surgical spirit. Then we also use the head from the ‘matches’ stick and mix with the mouse poo and crush it down until is a fine powder. Then we apply the fine powder on the cord area. (P20, 19-year-old)

In addition to the various preferred herbal formulations, other participants mentioned that they apply breastmilk on the umbilical cord to increase the rate at which it dries. This is evident in the following quotes:

We do a full bath after two days with warm water, then clean the cord with the spirit, and apply breast milk so that the cord can dry and fall fast. (P18, 20-year-old)

They say we pour breast milk on the cord, like basically the newborn baby we need to apply the breast milk when I wake up in the morning, on the belly button. (P17, 23-year-old)

Furthermore, despite using surgical spirit in the NICU, participants were dissatisfied with its effectiveness. Most mothers felt that the delayed umbilical cord drying, and detachment were caused using surgical spirits.

One participant mentioned:

The way of taking care of children here is different; for instance, the surgical spirit is not so effective in cleaning and making the cord dry. The cord would have fallen by now if I was home. (P05, 38-year-old)

Another participant expressed that:

With home remedies it takes up to three days but with the surgical spirit, it takes seven days. It is fast if you do it traditionally. (P13, 22-year-old)

In support of the above participant, another participant further explained that:

We are staying with elderly people at our homes, so immediately after the baby is born, we start by treating her umbilical cord, which, culturally or religion-wise, is much faster than what we use here at the hospital, because even here at the hospital, they treat the cord by spreading spirit on the cord, but it takes time. (P14, 39-year-old)

Sub-theme 4.2 treatment of dehydration “ phogwana or lebalana ”

Some illnesses experienced by newborns are deemed to be not-for-hospital treatment but require indigenous healthcare practices or treatment. For example, dehydration is an indigenous childhood illness called phogwana, which traditionalists treat through herbal formulations. Other participants were concerned that their infant might suffer from phogwana while admitted to the NICU.

Maybe if I do things the way I am used to doing on the baby, he might recover, or maybe the baby has phogwana, and the doctor thinks it is something they can treat. (P06, 23-year-old)

The following participant echoed a similar notion in support:

When the baby is sick with lebalana, you do not take the baby to the hospital because they do not know how to treat that. You take her to someone. In Tshivenda, we say when the baby has lebalana, they must cut, burn things that came out of it, and then come to the baby… then the baby heals at the same time. (P17, 23-year-old)

Furthermore, participants shared that phogwana needs to be treated by a traditional healer or with traditional medicine. This is evident in the following quote.

If the phogwana is not beating well, there is a traditional medicine that we apply to make sure that it does not affect the baby. (P16, 38-year-old)

Sub-theme 4.3 care of eyes, ears, and nose

The subtheme of "care of eyes, ears, and nose " within the major theme of indigenous healthcare practices for preterm infants is represented by traditional methods of addressing issues related to the eyes, ears, and nose. Most participants reported using breast milk to clean and treat minor ailments of the eyes, ears, and nose.

Most of the time we use breast milk to take care of their eyes, and that even allows them to sleep peacefully, we take few drops of our breast milk and pour them inside his eyes. (P08, 31-year-old)

Another participant added that:

If the eyes are having discharge, we express breast milk inside the eyes and wipes it using the tongue to remove the discharges. (P16, 38-year-old)

In addition to using breast milk for eyes, it was reported to treat blocked nostrils and common flu and clean the umbilical cord, as reflected in the following quotes.

Breast milk works especially when the eyes are white or having the discharges. Same as the nose, when the baby is having a flu, we put few drops of breast milk that is our culture. (P18, 20-year-old)

Participants believe that the non-nutritional use of breast milk as a remedy or treatment for minor ailments of the eyes, sinuses, and ears is effective. This traditional belief may be because breast milk contains antibacterial and anti-inflammatory properties.

Sub-theme 4.4 infant bathing practices

The current study further revealed that preterm infant bathing was not only done for hygiene-related reasons but was also seen as serving to stimulate weight, for physical strengthening, and to protect the infant against evil spirits. These reasons are reflected in the following quotes.

Traditionally we bathe her with sehlapišo (traditional medicine) used to bathe infants to stimulate weight gain. (P13, 22-year-old)

Another participant also shared that:

We use leaves from the Baobab tree to bathe the baby; it is a medication. It is responsible for making the baby strong. (P10, 39-year-old)

In addition to herbal medicines that stimulate infant weight, other participants reported using herbal formulations to protect the infant against evil spirits and negative auras. The usage of herbal formulations is evident in the following quotes:

They use mogato (a traditional form of medicine to protect the baby from being suppressed) for bathing her. They put mogato inside the water and then just bath her, more especially if there is someone from the extended family coming to visit. (P02, 25-year-old)

I use the mixture, add it to the water, and bathe the baby to remove the negative spirits and aura, and some is for weight-gaining stimulation because young babies are difficult to hold due to their size. (P14, 39-year-old)

Lastly, other participants also shared the same notion; however, they indicated that this kind of herbal formulation called sehlapišo should not be used on the infant’s head during bathing as it is believed that the infant’s head will grow at an expedited rate should it come in contact with sehlapišo . The following quotes demonstrate this point:

When we use ‘sehlapišo’ for two days, we keep the water and then the next day we dilute it with hot water so that it becomes warm, and then after bathing we rinse him. we only bath his arms and legs because if we bath his head and neck they will grow too as this is used for growing or gaining weight. (P08, 31-year-old)

You do not touch the baby’s head when using ‘sehlapišo’ you only bath him from the neck to his toes, because they say if it happens that you touch the baby’s head while bathing him, [otherwise] the head and face becomes swollen and changes size. (P09, 30-year-old)

This study highlights parents' experiences caring for their preterm infants and the cultural determinants that can be integrated into preterm care to ensure culturally sensitive care. Four major themes and related sub-themes emphasise the importance of healthcare professionals respecting and acknowledging cultural practices, beliefs, and customs relevant to parents of preterm infants admitted to their facilities.

Participants in the current study experienced a range of negative feelings, including shock, fear, and anxiety, concerning the unexpected event of preterm birth, consistent with the literature. For instance, studies conducted in Sweden [ 30 ] and Denmark [ 31 ] reported that the abruptness of preterm birth, combined with the physical environment of the NICU, evokes feelings of shock and overwhelm in parents. Furthermore, the fear and anxiety experienced by the participants in this study while caring for their preterm infant in the NICU corroborate the findings in existing literature [ 32 , 33 ]. Both studies reported that parents often oscillate between hope and fear, particularly regarding their infant's survival and the possible long-term health complications associated with preterm birth. This correlation could be explained by the fact that preterm birth is traumatic and a potential stressor because it occurs mostly under emergency conditions, often threatening both the parents and the infant's well-being.

The current study's findings revealed that most participants acknowledged receiving satisfactory care from the nurses and doctors, as they were regularly present and helpful in tending to the infants' needs. This finding mirrors those of a study which noted that parents appreciate the quality of care provided by healthcare professionals in the NICU [ 34 ]. However, some participants felt that the nurses were often not friendly and mistreated them in the NICU. The findings are similar to the study which reported that some parents were dissatisfied with the care they received, which often stemmed from perceived rude behavior or negligence [ 35 ]. While technical, medical treatment and care are vital, the current data highlight how such care significantly influences parents' experiences in the NICU.

Communication, both in content and manner, is essential in the NICU setting, as it profoundly impacts parental experiences [ 36 ]. In addition, communication was also identified as a critical component in providing quality care to a diverse population concerning incorporating culturally competent care [ 37 ]. The current findings showed that many parents were satisfied with the communication they received from healthcare professionals, particularly when they were given clear explanations about their infants' condition. However, specific communication issues, including using incomprehensible medical jargon, insufficient intervention information, and conflicting advice from different professionals, were pointed out. These issues align with previous research, highlighting the need for improved communication strategies in the NICU to better inform and support parents [ 38 ].

Regarding the attitude of healthcare professionals, our findings revealed a mixed perception among parents. Some parents expressed dissatisfaction with the perceived negative attitudes of healthcare professionals, echoing similar findings by Shields et al. [ 39 ]. Negative attitudes from healthcare professionals can lead to mistrust and increased stress among parents [ 40 ]. Conversely, other parents in our study reported positive attitudes and felt well-supported and valued by the NICU staff. This positive perception aligns with the previous study which suggested that positive interactions with healthcare professionals can improve parental satisfaction [ 41 ]. While the current findings corroborate existing literature, the heightened perception of both positive and negative aspects of care, communication, and attitude might be attributed to cultural diversity in Limpopo Province.

The current study found that naming preterm infants is the domain of senior family members, particularly grandmothers. This finding aligns with previous work which asserted that grandmothers play a crucial role in naming infants and performing associated rituals in African cultures [ 42 ]. This role could be because the naming process is closely related to ancestral communication, which grandmothers frequently facilitate. Furthermore, the study indicates that infants' names often carry important cultural meanings or memorials, reflecting events or individuals in the family's history. The belief in the power of naming to affect an infant's well-being corroborates with the previous study’s assertion that names in most African cultures bear profound significance, carrying the family's hopes, aspirations, and legacies [ 43 ]. Additionally, names help individuals understand who they are and the community to which they belong. Such findings underscore the importance of cultural considerations concerning naming preterm infants in the NICU to promote culturally sensitive care and enhance parents' experiences.

In this study, three cultural restrictions on infant access aimed at safeguarding preterm infants' health were revealed. These restrictions primarily concern those who attended funerals, pregnant women, and people who recently engaged in sexual intercourse. First, funeral attendants: participants believed they could introduce diseases or negative auras to preterm infants, so precautionary measures needed to be taken before access could be granted again. The precautionary measure, which includes isolating funeral attendants for several days and having them wash their hands with aloe and ashes before touching the infant, aligns with a study by McAdoo [ 44 ], which reported similar customs among various African cultures. The use of aloe and ashes might stem from the fact that they contain some antibacterial properties, which may kill or lessen bacteria.

Second, according to our findings, pregnant women were also viewed as potentially harmful to preterm infants. This finding is unique as no other similar study could be located regarding the harm that could be brought by pregnant women. Third, individuals who recently engaged in sexual intercourse were deemed to have negative auras that could harm infants, particularly from parents' perspectives. This restriction echoes findings of previous study which revealed that newborns are isolated from young girls who engage in sexual activities as they can delay umbilical cord falling off [ 45 ]. This finding highlights the need for open dialogue and understanding regarding sexual practices in NICU care.

This study's findings underline the key role of family members in caring for preterm infants, which aligns with previous research in the field. Particularly, participant responses corroborated the evidence of family involvement as crucial to maternal well-being and infant care, as shown in a study conducted in the United States [ 46 ]. The responses reflect an appreciation for the support offered by extended family, primarily in providing mothers with rest and recovery time, mirroring previous findings [ 47 ]. The significance of family engagement in this study can be linked to cultural norms and values in the Limpopo Province and South Africa.

Most South African tribes, particularly indigenous ones, strongly believe in communal assistance and interdependence, particularly at significant life events such as childbirth. This is frequently characterised by extended family members stepping in to aid and support the new mother, allowing her time to relax and heal while contributing to the infant's care. Additionally, the similarity in support between NICU nurses and family members emphasized by participants resonates with the notion of family-centred care advocated by other scholars [ 48 ]. This approach, which suggests that healthcare providers can emulate a sense of familial support, highlights the importance of aligning clinical practices with the socio-cultural context of care.

Most participants expressed a reliance on prayer for the health of their infants, personal strength, and wisdom for healthcare professionals, which aligns with other studies that demonstrated the importance of spiritual beliefs in health outcomes and coping mechanisms [ 49 , 50 , 51 ]. Moreover, the idea of communal prayer being more potent than individual prayer, as pointed out by one participant, echoes classic sociological theory on the collective effervescence and emotional energy generated in communal religious rituals [ 52 ]. This finding accentuates the importance of understanding and integrating spiritual needs and beliefs in the NICU environment.

Interestingly, participants in the current study also invoked ' ditaelo ', or church prescriptions, in protecting and healing their infants. This practice, not extensively documented in the existing literature, appears to be a distinct element of religious observance in this cultural context. It may relate to African traditional healing practices, as discussed in the previous studies which indicated a unique fusion of Christianity and indigenous beliefs [ 53 , 54 ]. This practice underscores the cultural and spiritual complexity surrounding NICU care in the Limpopo Province and calls for further research to better comprehend these practices and their implications for infant care.

The participants’ experiences in the current study regarding umbilical cord care revealed that most parents reported using and believing in traditional cord care practices. These participants further described using ashes, powdered wood soot, breast milk, and soil from termite mounds topically to dry off and heal the umbilical cord. The use of herbs to treat and care for the umbilical cord was not unique to the participants in this study. In Sub-Saharan countries including South Africa [ 45 ], Zambia [ 55 ], Nigeria [ 56 ], Pakistan [ 57 ], and Uganda [ 58 ], the topical application of substances to the umbilical cord to hasten its detachment has been reported. It is important to acknowledge that while these traditional practices hold cultural significance and have been used for generations, their efficacy and safety may differ. In some cases, such practices may carry risks, such as infection or irritation. Healthcare providers should be aware of these cultural practices and engage in open and respectful conversation with families to understand their beliefs and preferences while also providing safe evidence-based care.

Moreover, participants also expressed dissatisfaction with modern procedures, such as surgical spirits, which they perceived as less effective than traditional practices because it makes the cord detach after seven days. This perception echoes the findings of study which revealed that some cultures believe traditional practices provide superior results compared to modern medical care, particularly for infants [ 59 ]. Although the herbal formulation was preferred over modern medical care, it has not been scientifically evaluated and studied; therefore, there is a potential risk of infection and other complications. Further research is needed to understand the scientific functionality of herbal formulations used to treat and dry off the umbilical cord.

This study showed that there are perceptions that certain medical conditions affecting newborns do not necessitate hospital care but rather require indigenous healthcare practices or treatment. For instance, phogwana was mentioned as a condition that needs out-of-hospital treatment by traditionalists. Similarly, this finding supports the previous literature which documented that the treatment of phogwana requires a traditional healer [ 44 , 60 ]. In addition, the literature indicated that the characteristics, prevention, and treatment of phogwana correspond to specific cultural contexts [ 61 ]. Providing medical care for premature infants outside of the hospital, under the guidance of traditionalists, may pose result risks, such as adverse responses to herbal therapy and metabolic poisoning. The immature organs of preterm newborns may have limited ability to efficiently remove metabolites of herbal medicines, which could potentially cause more health complications and death [ 62 ].

Furthermore, regarding the care of eyes, ears, and nose, participants reported using breast milk as a treatment for minor ailments. The belief in the antibacterial effects and healing properties of breast milk in traditional medicine is further substantiated by this finding, aligning with existing literature. These studies reinforce the multifunctional uses of breast milk beyond nutrition, including its application in treating eye infections [ 63 ] and alleviating nasal congestion, among others [ 64 ]. Although the benefits of breast milk are recognised, it is crucial to follow proper hygiene protocols when dealing with it. This includes washing your hands before handling breast milk and using sterile containers and applicators. Neglecting to maintain good hygiene can potentially introduce infections to the ears, nose, and eyes.

The participants in the current study reported that infant bathing was performed with different herbs for several purposes, such as stimulation of weight, warding off the evil spirit, and strengthening and protecting the infant. Herbal formulations used for bathing included sehlapišo , mogato , and baobab tree leaves. This study's findings agree with several studies on the African continent. In Uganda, infants were bathed with kyogero to attract fortunes [ 65 ], and in South Africa [ 44 ], India [ 66 ] and Nigeria [ 67 ], herbal medicine was also used during infant bathing for strengthening and spiritual protection purposes. One possible reason for the similarity could be that all studies reporting indigenous infant bathing were conducted on the African continent, which has overlapping cultural practices. It is clear from this finding that bathing practices are not merely physiologically functional but are often symbolic, serving various socio-cultural purposes and highlighting the intersection of cultural belief and healthcare. Preterm infants are vulnerable to health risks such as hypothermia, skin irritation, and infection due to their underdeveloped thermoregulatory system, delicate skin, and immature immune system [ 68 ]. Ritual bathing, particularly if not performed carefully, has the potential to worsen these health risks. It is recommended that healthcare professionals should ensures measures to guarantee that the ritual bathing environment for preterm newborns is secure, hygienic, and at a suitable temperature to reduce these dangers.

Limitations and strengths of the study

This study explored the cultural determinants of parents that can be incorporated into preterm infant care to ensure culturally sensitive care as part of maternal and childcare routine in the NICU in Limpopo Province. Although the qualitative design was the most appropriate to explore the phenomenon in this study, it limited the study's findings as it was not generalizable. Additionally, the primary investigator’s unconscious biases and perceptions could have influenced data analysis, however bracketing was applied to limit bias. Furthermore, to limit biases, the experts conducted a confirmability audit of the study project by checking and rechecking the collected raw-, coded- and interpreted data. The current study was conducted in a public hospital in Limpopo Province to explore the experiences of parents of preterm infants in the NICU, which may differ substantially from those in private hospitals and other provinces. Therefore, future research is recommended to explore this phenomenon in private hospitals and other provinces in South Africa.

The current study provides an understanding of parents' experiences caring for preterm infants in the NICU. The study offered meaningful insights into indigenous healthcare practices, emphasizing their crucial role in preterm infant care in specific cultural contexts. The cultural determinants included various topics, such as caring for the umbilical cord, treating phogwana , caring for the eyes, ears, and nose, and infant bathing customs. These practices showed a deeply ingrained belief system and a rich cultural heritage that have a meaningful impact on healthcare behaviours. However, these cultural determinants might have both positive and negative implications.

The findings demonstrated a strong reliance on traditional methods and herbal formulations in caring for preterm infants. Parents emphasised the advantages of these practices over current medical procedures, notably in treating disorders not frequently recognised by modern medicine and the care of the umbilical cord. This discontent with contemporary practices, highlights the need for culturally sensitive healthcare which can be conducted by conducting cultural assessments to understand the beliefs, values, and practices of the families in the NICU.

Overall, the findings of this study highlight the profound role of indigenous healthcare practices for preterm infants, reinforcing the need for a culturally sensitive approach in healthcare.

Availability of data and materials

The dataset materials generated and analysed during this study are accessible upon justified request from the corresponding author [MN].

Abbreviations

Neonatal Intensive Care Unit

North-West University

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Acknowledgements

The authors would like to extend their gratitude to all the parents of preterm infants who participated in this study and the assistant researchers who assisted in collecting the data.

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M.N. conceptualised and developed the research protocol, conducted research (gathered, analysed, interpreted, and managed the data), and wrote the initial draft. W.L., S.S.M., and K.D.S. supervised the research and provided inputs and guidance for the research protocol development, data collection, analysis, and interpretations. All authors have read and approved the manuscript.

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The current study was executed in accordance with the Declaration of Helsinki and approved by North-West University Health Research Ethical committee [NWU-00267-21-S1]. Limpopo Province [LP-2021-08-027] granted permission to conduct the study through the National Health Research Database website. The management of the tertiary hospital granted goodwill permission for the study to be undertaken in their NICU. All the parents of preterm infants who participated in the study provided written informed consent. Participants were informed that participation in the study was voluntary and that they could withdraw anytime without penalty.

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Nyaloko, M.J., Lubbe, W., Moloko-Phiri, S.S. et al. Parental experiences of caring for preterm infants in the neonatal intensive care unit, Limpopo Province: a descriptive qualitative study exploring the cultural determinants. BMC Health Serv Res 24 , 669 (2024). https://doi.org/10.1186/s12913-024-11117-6

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Women’s emotional roller coasters during pregnancy as a consequence of infertility: a qualitative phenomenological study

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• Parisa Hadavibavili   ORCID: orcid.org/0000-0002-0135-9651 1 , 2 ,
• Yasemin Hamlaci Başkaya   ORCID: orcid.org/0000-0002-1533-8667 1 ,
• Gamze Bayazi̇t   ORCID: orcid.org/0009-0004-0816-3960 3 &
• Arif Serhan Cevrioğlu   ORCID: orcid.org/0000-0002-3810-6519 4  

Women experiencing infertility tend to experience distinct emotions during pregnancy following infertility. Individuals in this population often struggle with psychological and social challenges during pregnancy. This qualitative phenomenological study determines how infertility experiences affect mothers’ mental well-being during pregnancy as well as their experiences and emotions after becoming pregnant. A face-to-face, in-depth interview with 15 women with infertility was conducted between November 2022 and May 2023. The study adhered to ethical guidelines, with informed written consent obtained prior to interviews and voice recordings. The COREQ checklist is applied to follow the EQUATOR guidelines for reporting research and the data were coded using MAXQDA.20 software. A thematic analysis revealed four main themes and 15 codes. Main themes included “Over Emotional Burden,” “Overprotection,” “Overthinking,” and “Social Activity Changes.” Pregnancy after infertility is a unique and emotionally charged experience for women, encompassing a spectrum of feelings that can be difficult to express. The importance of caring for these women and receiving support from their partners, families, and healthcare providers should not be overstated. Healthcare providers should be aware of these emotional challenges so they can provide better support and counselling to improve women’s overall pregnancy experience. It is believed that empathetic communication and tailored support can significantly improve the psychological well-being of this population. Psychologists, psychiatrists, and midwives should also be more attentive to mothers’ emotional challenges and integrate comprehensive emotional support and provide coping mechanisms in perinatal care programs.

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Introduction

Infertility has been a prevalent health problem in recent generations around the world (Fainberg & Kashanian, 2019 ). Couples with infertility generally struggle with socioeconomic, psychological, physical, and cultural consequences of this condition (Kianfar et al., 2023 ). Based on statistical analysis, 10–15% of the world’s population experience infertility (Bakhtiyar et al., 2019 ). This condition is considered a severe disability and ranks fifth in severity. Considering the causes and duration of infertility, it may significantly affect a couple’s psychological well-being (Borumandnia et al., 2022 ). According to the literature, nearly half of women seeking infertility treatments struggle with disorders aligned with posttraumatic stress disorder. Researchers have also noted that infertility concerns impair coping mechanisms in individuals which result in considerable stress and anxiety among infertile couples (Renzi et al., 2023b ). Nowadays, infertility procedure is often suggested as a double-edged sword that can cause considerable emotional distress, social stigma, and financial concerns in couples (Taebi et al., 2021 ). According to the literature, infertility treatment processes mainly affect women more than men, and infertile women are considered deficient women in some cultures and societies (Olma & Bir, 2018 ; Yao et al., 2018 ). According to a literature, the better quality of life of couples is strongly associated with more success rates in infertility treatments. It also appears that decreased psychological symptoms as well as enhanced emotion regulation abilities may contribute to improved success rates in treatment centers (Renzi et al., 2023a ). Pregnancy after infertility can be a unique and emotionally inspiring experience for infertile couples. However, even after achieving a successful pregnancy, women who have experienced infertility may struggle with psychological and social challenges during pregnancy and after childbirth (Crespo & Bestard, 2016 ). Studies have shown that women who get pregnant after infertility experience some levels of stress and anxiety regarding their fetal and maternal outcomes. Their pregnancy may also result in confusing feelings between excitement and grief (Maehara et al., 2022 ). In the first trimester, the infertile woman often struggles with fears of pregnancy loss, possible fetal abnormalities, and adapting to significant physical changes (Dornelles et al., 2016 ). During the third trimester, anxiety and stress can be caused by the fear of pregnancy complications and preterm labor. Furthermore, infertile women may face challenges in selecting a safe delivery method (Huang et al., 2019 ). According to the literature, there is considerable research on mental health before and after pregnancy in infertile couples (McMahon et al., 2011 ).

In this qualitative study, we aim to investigate how infertility experiences affect mothers’ mental well-being during pregnancy as well as their perspectives and feelings after becoming pregnant.

Study design

This research is a qualitative study with a Heideggerian, hermeneutic phenomenological approach. This study was framed by Heideggerian phenomenology, and its Heideggerian influence extends throughout the entire study. In this approach, personal experience and the interpretation of events is emphasized as significant components of understanding human cognition and behavior (Heidegger, 1996 ). As a method of studying human experience, hermeneutic phenomenology has the unique potential of being able to examine complex phenomena in depth. Methodologies like this are well suited for representing the depth and complexity of individual experiences, providing detailed context to understand the complex interaction of factors influencing individuals’ life experiences (Plager, 1994 ). All in all, this study uses hermeneutic phenomenology because of its suitability to explore human experiences of complex phenomena. This method involves analyzing and reflecting on participants’ life experiences in order to gain a deeper understanding of their subjective perceptions, interpretations, and understandings (Annells, 1996 ).

In this study, the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist is applied to follow the EQUATOR guidelines for reporting research. This is a 32-item checklist for reporting interviews and focus groups systematically. The checklist provides researchers with a framework for reporting key study design, data collection, and analysis aspects, fostering clarity and reproducibility. The criteria also cover various aspects of qualitative research, including data collection methods, participant recruitment, and analysis processes. Furthermore, following established reporting guidelines facilitates peer review by providing standardized criteria for assessing the validity and quality of qualitative research. In reporting qualitative research, the COREQ checklist emphasizes ethical considerations, such as ensuring participant privacy and providing a clear ethical rationale. Ultimately, adopting EQUATOR guidelines further improves qualitative research reporting standards, as well as improving qualitative research practices more broadly (Hope & King, 2022 ).

Participant selection

This study included participants who got pregnant after being diagnosed with infertility and agreed to participate in interviews. Researchers recruited participants from pregnant women who had experienced infertility and attended the Sakarya Training and Research Hospital’s perinatal clinic between November 2022 and May 2023. The interviewer, who was a registered midwife, obtained patient information from the hospital’s electronic medical records system. In order to recruit participants, A phone call was initially made to inform and gain permission from the participants, and then appointments were scheduled at convenient times and dates using social media and messenger applications such as WhatsApp and Telegram. Interviews took place in a quiet consulting room at the hospital, allowing open and honest communication. Interviews were conducted without the presence of other participants or researchers in order to preserve privacy and confidentiality. In this way, participants were able to share their experiences without concern for their privacy. Participants under 18 years of age and participants who withdraw from the study during the interview are excluded from the study. The registered midwife contacted 20 mothers initially and invited them to participate in the study. One mother declined participation due to her husband’s objection. Another mother cited privacy concerns as the reason for her non-participation. A third mother commented that her pregnancy period was challenging and she wished to forget it. The fourth mother moved to a different hospital and the final mother relocated to a different city in the second trimester. In this study, a comprehensive amount of data was collected and data saturation was deemed sufficient by the authors. A total of 15 mothers participated in the study. The interviews began with open-ended questions such as “How would you describe yourself before and after pregnancy?”, “How has the diagnosis of infertility affected your perspective on pregnancy?”, “How do you evaluate your relationship with your partner after becoming pregnant?”.

Pregnant women who experienced infertility and attended Sakarya Training and Research Hospital’s perinatal clinic between November 2022 and May 2023 were participants in the study. The interviews were conducted without the presence of any other participants or researchers.

Data collection

An in-depth interview was conducted with participants using a sociodemographic form, semi-structured interview form, and a TSCO audio recording device (Model no. TR906, Made in China). A written consent was obtained from participants before the interview and recording. The demographic characteristics of the participants were collected from the patients face-to-face in a quiet consulting room at the hospital. The interview took place during a period when patients were visiting the hospital for routine pregnancy check-ups. We decided on this for patient convenience and time efficiency. Audio recording permission was also obtained before the interviews began from the participants. In order to eliminate hesitation about the study and to encourage the interviewees to answer the questions honestly, the researcher explained to each interviewee that they would be assigned a number based on their order in the interview. After the interview, notes were taken while listening to the recordings. After obtaining written consent, completing sociodemographic forms, and scheduling face-to-face sessions, approximately 25–30-minute interviews were conducted. In qualitative research, the sample size is determined by the concept of data saturation. Data saturation occurs when no new information or themes emerge from the data, indicating that the sample size is adequate (Francis et al., 2010 ). According to our study, themes and insights recurred as the interviews progressed, indicating that the desired themes were thoroughly explored. Data saturation was considered sufficient in the study as all desired themes were adequately explored, and a comprehensive amount of data was collected.

Data analysis

In the study, two researchers contributed as data coders. The data was coded through thematic analysis to form related themes based on the document’s content. In qualitative data, themes can be identified, analyzed, and interpreted through thematic analysis. It emphasizes the active role of the researcher in the process of coding and theme development. Researchers organize and report their analytical observations using themes and psychiatrists are using these versions due to their greater flexibility (Clarke & Braun, 2017 ). Ultimately, 15 codes were determined along with four themes. The corresponding author (Ph.D. candidate) and second researcher (Ph.D.), who were experienced in analyzing qualitative data, classified and identified codes and themes through the study content. The first three authors of this study were female, and the last author was male. All of the authors have considerable experience in infertility and pregnancy and a keen interest in filling a gap in infertile women’s mental health during pregnancy. In the study, the themes were derived from the data rather than being predetermined, and through researchers’ analysis of participants’ responses and experiences, themes emerged initially. A MAXQDA Analytics Pro 2020 program was used to manage the data in this study.

Rigor and trustworthiness

The data’s trustworthiness was assessed based on the suggestions of Guba and Lincoln (Cypress, 2017 ; Guba & Lincoln, 1981 ). A trustworthiness concept can be categorized into credibility and dependability. The concept of credibility corresponds roughly to the concept of internal validity as defined by positive ideologues, while that of dependability corresponds to the concept of reliability. In terms of reliability, transferability, which is external validity, and confirmability, which relies mostly on presentation (Gunawan, 2015 ). The phenomenological approach was used in our study as a qualitative research design to verify the study’s credibility (Rodriguez & Smith, 2018 ). The last researcher, who was an obstetrics and gynecologist and specialized in infertility, reviewed the themes and verified the process’ accuracy. The concept of transferability is traditionally associated with the application or generalization of findings to a wide range of situations. However, qualitative research emphasizes the richness and depth of insights rather than strictly transferring them into other contexts. By examining individuals’ experiences within a specific context, qualitative research illuminates the intricacies and mechanisms underlying a phenomenon (Leung, 2015 ). Through member checking we allow participants to review and verify the findings as part of the research process.

Furthermore, we ensured that the findings were transferable and considered different viewpoints by incorporating multiple perspectives. In order to enhance the dependability of our data and ensure that our findings are accurate and reliable, we use an audit trail. In the audit trail approach, we tried to keep a detailed record of the research process, from decisions to data collection and analysis. A skilled researcher enhances the dependability of data through qualitative research principles, so we provided education courses with certificates for authors with little or no experience in qualitative studies. In order to enhance data confirmability, peer review strategies were used to ensure that the findings accurately reflect the participants’ perspectives and experiences, as well as the researcher’s interpretation, and enabled us to examine the data, analysis, and interpretation critically, ensuring the findings were trustworthy.

Ethical consideration

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Sakarya University on 05.10.2022 by the number E-71522473-050.01.04-171377-258. Informed written consent was obtained from participants before the interview and recording the voice, ensuring that they understood the study’s purpose, procedures, risks, benefits, and confidentiality. All participants were informed that they had the right to withdraw from the research at any time without consequence.

The demographic analysis revealed that the participants were between the ages of 22 and 38, with a mean age of 30.33 ± 4.19. There were 15 women; three graduated from universities, five from high schools, three from secondary schools, and four from primary schools. Eleven women were housewives, three were civil servants, and the remaining one was a family physician. The median duration of infertility was 3.73 years, ranging from 1 to 10 years. All participants except four mentioned female factors as a cause of infertility. One participant had both male and female factors. Two participants mentioned a malefactor, and another mentioned unexplained reasons. Regarding infertility treatment, seven participants got pregnant through IUI, and eight got pregnant through IVF. Some demographic characteristics of the participants are shown in Table  1 .

Mothers’ perspectives on emotional challenges during pregnancy after infertility revealed four themes and 15 codes: (1) Over Emotional Burden, (2) Overprotection, (3) Overthinking, (4) Social Activity Changes. Figure  1 shows the coding tree.

Coding tree of the mothers’ psychological experiences in pregnancy after infertility

Theme 1: Over Emotional Burden

An infertility diagnosis can continue to impact the emotional well-being of the couple after pregnancy, making the perinatal period even more challenging. Pregnancy after experiencing infertility can be a journey filled with a complex combination of emotions, almost like a roller coaster ride of emotions. In the present study, pregnant women with a history of infertility reported intense emotional burdens, including Emotional Roller Coaster, Fear, Anxiety, Hopelessness, and Regret.

Emotional Roller Coaster

The roller coaster represents mothers’ unpredictable emotional ups and downs. Consequently, they feel overwhelmed and incapable of coping with their emotions. The emotional roller coaster women experience post-infertility is complex. An initial feeling of happiness and excitement can quickly turn into anxiety and uncertainty after a successful pregnancy.

“I am moving through some ups and downs emotionally. Actually, I express my emotional state to my husband a little bit, but he manages me well, thanks to him. Sometimes, I cry for no reason; sometimes, I get angry. Things happen momentarily.” (P1, female factor, 1-year infertility)

“Pregnancy was both a dream and a nightmare for me.” (P4, female factor, 4-years infertility)

Fear / Anxiety

It is common and understandable for women to feel fear and anxiety during pregnancy, especially following an infertility diagnosis. There may be a fear of miscarriage, preterm birth, or other complications that women experience during pregnancy, intensified by the memories of previous struggles. The women who participated in the current study stated that they often experience disappointment and uncertainty during pregnancy.

“In the early stages of my pregnancy, I was filled with fears and worries. I was afraid of miscarriage first, then … ” (P13, female factor, 8-years infertility)

“During the early stages of my pregnancy, I was very anxious. It was a fear in my mind to have a fake pregnancy.” (P3, female factor, 1-year infertility)

Hopelessness

Hopelessness after long infertility treatment is a complex and reasonable emotional response in infertile couples. Many couples struggle with infertility for months or even years with repeated medical interventions and emotional challenges.

“I always thought pregnancy was impossible and unachievable for a long time.” (P13, female factor, 8-years infertility)

“There were many difficult experiences for me during infertility treatments, especially waiting in infertility clinics, which were emotionally draining for me. There were pregnant patients waiting in the reception hall. When I saw them, I thought it would never happen to me to be a mother.” (P9, female factor, 6-years infertility)

The experience of pregnancy may cause regret after years of infertility struggle. There are many factors that can contribute to regret, and it is a deeply personal emotion. It may result from a sense of lost control over one’s reproductive journey or from the impact it has had on one’s family and relationships.

“The first few months, I was constantly suffering from illness. I thought I would never recover, and I just wanted to deliver as soon as possible. Even I asked myself, what did we do? I was certain it would not pass. My health isn’t that bad, but it was quite bad.” (P2, female factor, 1-year infertility)

Theme 2: Overprotection

Overprotection is a natural reaction to the possibility of losing something that was so highly desired and hard-earned. When a mother experiences infertility, balancing motherhood and safeguarding pregnancy could be challenging and may lead to overprotection during pregnancy. In this study, this phenomenon is displayed in various aspects, including impacting changes in sexual life, delivery mode preferences, disruptions in social life, and an insistence on maintaining constant check-ups. It is imperative to recognize and address these feelings by healthcare providers to ensure a successful transition to pregnancy and a healthy psychological state.

Changes in Sexual Life

A pregnancy after struggling with infertility can significantly affect a couple’s sexual life. A shift in women’s sexual behaviors is often accompanied by a tendency to overprotection due to fears of potential complications.

“I don’t have a sexual life anymore. As soon as I learned I was pregnant, my husband would not even touch me.” (P4, female factor, 4-years infertility)

“I am afraid of causing harm to the baby, so we don’t want it at all. It is fear, not reluctance, that makes us avoid sexual activity.” (P2, female factor, 1-year infertility)

Delivery Mode Preference

Delivery mode preferences should be based on medical advice and individual circumstances. However, for couples who have experienced infertility, overprotection thoughts can influence their decision-making process. It is imperative to understand the reasons behind preferences and provide comprehensive information during the prenatal period. This will assist couples in making an informed decision.

“I am insistent on a cesarean section because I’m afraid something will happen during labor and harm the baby.” (P15, female factor, 10-years infertility)

Disrupted Social Life

Experiencing a pregnancy after infertility can change one’s social life. Transitioning from infertility to pregnancy can also introduce new dynamics and challenges in social interaction, while the entire experience can be isolating in itself.

“Pregnancy left me socially withdrawn.” (P13, female factor, 8-years infertility)

“Fear of abortion prevented us from having a normal social life during pregnancy. I always had to rest in bed. Consequently, we were socially isolated.” (P8, female factor, 4-years infertility)

Maintaining Constant Check-ups

Couples who experience pregnancy after long-term infertility often maintain continuous perinatal check-ups due to overprotective thoughts and a desire for early detection of potential complications. Anxiety and cautiousness can often increase among women who have struggled with infertility, fearing something unexpected may occur during pregnancy.

“In the first trimester, the doctor told me there might be something wrong with his heartbeat, so I tried to schedule an appointment with another doctor that day or sooner, but I couldn’t find an appointment, so I went to a private hospital right away.” (P2, female factor, 1-year infertility)

“My perinatal care and follow-ups are carried out in two private hospitals, a state hospital, a city hospital, and a university hospital. In other words, I visit for perinatal check-ups in five different hospitals to ease my anxiety and heightened concern. I also remembered that I visited different doctors three days in a row.” (P1, female factor, 1-year infertility)

Theme 3: Overthinking

For many couples struggling with infertility, overthinking during pregnancy is a common phenomenon. The long-term process of infertility treatment and its low success rate often results in considerable uncertainty, disappointment, and anxiety, which can continue to develop during pregnancy and cause mental overload.

In psychology, escapism is the act of removing oneself from issues, stress, or discomforts in the present moment. A number of effective strategies were used by the women in this study.

“I did a lot of knitting, quilting, and embroidery. I was always excited, and I needed to distract my thoughts.” (P15, female factor, 10-years infertility)

Information Hunting

In this study, the process of seeking knowledge, guidance, and reassurance during pregnancy after infertility is known as information hunting.

“During my pregnancy, I downloaded all available pregnancy programs, consulted friends who were pregnant or had delivery experiences, and consulted medical professionals” (P11, female & male factors, 7-years infertility)

“I did a lot of research on the internet about my pregnancy. I even burned my food because of it. My close friends also gave me advice….” (P6, female factor, 1-year infertility)

The Future in Mind

A woman who overcomes infertility and gets pregnant experiences different emotions. Eventually, her fears of losing the pregnancy turn into joy and hope. The mother began to dream about a future with the baby she had been expecting for so long.

“The baby’s coming makes us happy; our happiness depends on our baby. I am very happy and excited. At some point after all these years, I’d like to hear a baby crying at home. The scent of the baby is what I want to smell.” (P5, female factor, 2-years infertility)

“I want to cuddle my baby as soon as possible and put her to sleep with me. Spending time with my baby and going for walks together is what I dream of all the time.” (P4, female factor, 4-years infertility)

Whirlpool of Thought

In this study, the whirlpool of thought does not just refer to the feelings that mothers experience during pregnancy but also the overwhelming thoughts they deal with.

“As time went on, I got more and more worried, and the little things started to affect me very much.” (P7, Male factors, 2-years infertility)

“My priorities changed even while the fetus was still in my abdomen. I became more nervous, and I feared the baby would not move. Everything was planned around the baby.” (P11, female & male factors, 7-years infertility)

Theme 4: Social Activity Changes

For the expecting mother, pregnancy after infertility can cause a variety of social changes. During pregnancy and motherhood, she experiences profoundly personal and emotionally stressful moments.

Care Expectation

An expectant mother has unique expectations when it comes to pregnancy after infertility. During this precious time of infertility, the woman may have heightened emotional and physical needs.

“It would be great to have my mom and husband with me during pregnancy.” (P12, unexplained, 3-years infertility)

“In infertility and during pregnancy, you only need attention and thank God my husband was always by my side.” (P11, female & male factors, 7-years infertility)

Self-Stigma

An unconscious negative belief or feeling of a woman about her infertility process and pregnancy may lead to self-stigma at the time.

“I felt a sense of responsibility towards my husband since I was the one with the infertile factor and responsible for our infertility. I thought I wouldn’t have any chance of getting pregnant.” (P6, female factor, 1-year infertility)

“For a long time prior to becoming pregnant, I felt inadequate and useless in many aspects of my life. Our past difficulties during the infertility treatment process really exhaust me, I think.” (P13, female factor, 8-years infertility)

Spousal Support

Spouse support is imperative to navigating from infertility to a pregnancy process. In this study, most women reported their husbands supported them financially and emotionally during pregnancy.

“My husband liked me much better and started paying more attention to me after getting pregnant. Thank God, he helped me with house chores and didn’t make me tired doing them.” (P4, female factor, 4-years infertility)

“My husband is the most supportive person in my life. I may have talked a lot about him, but he really is my biggest supporter. I feel stronger when he is beside me; he is my source of strength.” (P1, female factor, 1-year infertility)

In this study, participants stated that they experience a variety of mixed emotions, which lead to a feeling of overwhelming following infertility treatment and during pregnancy. Our study identified four dominant themes: Overemotional Burden, Overprotection, Overthinking, and Social Activity Changes. Our results show that, pregnancy after long-term infertility treatments often results in roller-coaster emotions, fear, anxiety, and hopelessness in mothers. According to mothers’ reports, moments during pregnancy they caused mothers anxiety in different trimesters. They also mentioned feeling relieved and emotionally inspired by becoming mothers. The study conducted by Bovin et al. in 2023 showed that approximately 12% of women with infertility mentioned the words anxious and worried, and 8% mentioned disappointment as the most frequent words to describe their feelings even after pregnancy (Boivin et al., 2023 ). Swanson et al. in 2021 also describe the infertility process as full of a roller coaster of emotions and feelings. It is described that the infertility treatment process is characterized by a period of sadness and grief, followed by some renewed sense of hope after getting successful results (Swanson & Braverman, 2021 ).

According to our study, overprotection is reported as a common reaction among pregnant women during interviews. Fear of loss, a desire to safeguard, and long-awaited expectations of a baby can lead to overprotective attitudes, which are reflected in their sexual and social lives adversely and in the perinatal care process. It is also possible for such overprotection to impact the preferred mode of delivery to ensure the baby’s safety. In our study, mothers report decreasing or withdrawing from sexual activity during pregnancy due to fears that they may harm the baby, cause miscarriage, or adversely affect the pregnancy. Mothers also reported social isolation due to their fears of miscarriage or complications during pregnancy. According to our results, mothers need frequent medical check-ups and continuous monitoring to ensure their babies’ health and detect potential complications early to protect their fetuses. According to a study conducted by Fukui in 2021, mother-to-infant bonding scores were positively related to perceived maternal overprotective attitude in late pregnancy (Fukui et al., 2021 ). However, a study conducted by Ohara in 2018 showed that excessive overprotection sense during pregnancy could be determined as a cause of bonding failure during pregnancy. When a mother exhibits overprotective behavior during pregnancy, she generally spends more time in the caring process. As a result, she may not have enough time to establish a motherhood role during pregnancy (Ohara et al., 2018 ). A study conducted by Phan et al. in 2021 reported that approximately 30% of pregnant women had no sexual activity during their pregnancy. Pregnant women in this study were most concerned about infection and damage to the fetus (Phan et al., 2021 ).

In our study, pregnant women described adverse changes in their social life which introduce new dynamics and challenges to their social interaction. A study conducted in 2016 by Velikonja et al. reported that women who get pregnant with assisted reproductive technologies are more likely to be socially marginalized. They also reported greater positive emotions and greater life satisfaction as the pregnancy progressed despite experiencing more medical challenges during the pregnancy (Velikonja et al., 2016 ).

According to our results, mothers experiencing pregnancy following long-term infertility tend to choose delivery modes based on their overprotective attitudes. In 2015, Reichelt et al. reported that the Cesarean rate was significantly higher in pregnancy after infertility than in spontaneous pregnancy compared to 20 years ago (Reichelt et al., 2015 ). A study by Chien et al. in 2015 reported that infertility treatment significantly influences mothers’ decisions about delivery modes. They also found that women who get pregnant with the In vitro fertilization method (IVF) may consider their fetus to be more vulnerable, and a cesarean delivery may be considered a low-risk method for the baby’s safety (Chien et al., 2015 ).

Overthinking in this study highlights how women who experience infertility always struggle with pregnancy-related thoughts. During the infertility treatment period, women may experience uncertainty, disappointment, and anxiety Several times. This condition can even cause psychological overload and mental exhaustion during pregnancy. Mothers in our study mentioned doing handicrafts such as knitting as a way to escape overthinking. Pedro, in 2015, identified escapism as a successful strategy for avoiding overthinking regarding infertility, pregnancy, and delivery in infertile women. Infertile women in this study describe escapism as a way to avoid thinking about anything else except their activities (Pedro, 2015 ). In our study, mothers mentioned they are always in the middle of information hunting online, in person, or consulting resources, even for the most straightforward pregnancy-related questions. A study conducted by Brochu et al. in 2019 reported that approximately 90% of infertile individuals surf the internet for information about infertility treatment processes and attempt to find more mental and medical support (Brochu et al., 2019 ). We believe that overthinking during pregnancy can be calming and exciting, especially when dreaming about the baby. However, when it is exaggerated, it can lead to overwhelming stress and anxiety in mothers. Mothers in our study shared their most precious dreams of holding their new baby after a challenging infertility journey. In our study, it was observed that that most infertile couples think about their future with their expected baby at least once a day.

Pregnancy after infertility results in various social changes for women (Boulet et al., 2017 ). A woman’s emotional experience of infertility and her various concerns and experiences during pregnancy adversely affect her mental health and contribute to the stigma attached to infertility (Zargar et al., 2023 ). In our study, women with female factor infertility often suffer from self-stigma and low self-esteem. According to Lin et al. in 2020, women who experience infertility suffer from low self-confidence and feeling inadequate, which results in self-stigma (Lin et al., 2022 ). In this study, mothers describe spousal support as an essential support system to overcome infertility challenges. In addition, they reported a higher level of mental support following pregnancy, as well as assisting with household chores and other daily activities. According to Choi et al. in 2023, spousal support significantly reduces stress levels in women with infertility. Women with a supportive husband are more likely to develop a more positive attitude towards infertility treatment and can also cope more effectively with infertility challenges (Choi & Moon, 2023 ).

Limitations

The study has limitations, despite providing valuable insight into women’s emotional challenges after infertility. The small sample size limits generalizability of results, since qualitative research inherently cannot be generalized to a broader population. Additionally, a stratified thematic analysis based on factors such as age group, education level, cause of infertility, and number of previous attempts was not feasible due to the high level of variability among the women included in the study. A more nuanced understanding of the diverse experiences would have been possible. A qualitative study involving spouses, family members, and healthcare professionals can provide valuable insight into the emotional challenges pregnant women face after infertility from multiple perspectives. A better understanding of the complexities of this experience could lead to more comprehensive support systems and interventions to help women who are experiencing these emotional challenges.

Pregnancy after infertility is a unique and emotionally charged experience for women, encompassing a spectrum of feelings that can be difficult to express. Our study results show four dominant themes which illustrate women’s complex emotional experiences and coping strategies during pregnancy. In this study, Over Emotional Burden, Overprotection, Overthinking, and Social Activity Changes were mentioned as the most common psychological concerns during pregnancy after infertility. Study results suggest healthcare providers who interact directly with pregnant women should be aware of these emotional burdens to understand mothers better and counsel them more effectively. Midwives, psychologists, and psychiatrists should also be more attentive to mothers’ emotions and provide coping mechanisms. This will enable mothers to experience their pregnancy with fewer possible adverse effects on both mother and fetus. However, research on infertile women’s emotional reactions and mental reactions during pregnancy is still limited. It may result from infertile mothers often concealing their emotions, ideas, and beliefs during pregnancy because they sacrifice themselves for the expected baby. This study can provide a starting point for further qualitative and quantitative studies on the psychological burden of pregnant women who experience infertility for a long time.

Data availability

The data supporting the findings of this study are available upon reasonable request.

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Acknowledgements

We sincerely thank the participants for sharing with us all of their experiences, no matter how positive or negative, hoping that no one will suffer as they did.

Open access funding provided by the Scientific and Technological Research Council of Türkiye (TÜBİTAK). This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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Hadavibavili, P., Hamlaci Başkaya, Y., Bayazi̇t, G. et al. Women’s emotional roller coasters during pregnancy as a consequence of infertility: a qualitative phenomenological study. Curr Psychol (2024). https://doi.org/10.1007/s12144-024-06158-3

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• Infertility (MeSH D007246)
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A qualitative study on the lived experiences of individuals with end-stage kidney disease (ESKD) accessing haemodialysis in Northern Ghana

• Edward Appiah Boateng 1 ,
• Aduni Amina Iddrisu 1 , 2 ,
• Joana Kyei-Dompim 1 &
• Philemon Adoliwine Amooba 1  

BMC Nephrology volume  25 , Article number:  186 ( 2024 ) Cite this article

Metrics details

Haemodialysis is Ghana’s most common form of renal replacement therapy for end-stage kidney disease (ESKD). However, limited research has explored the experiences of individuals with ESKD receiving haemodialysis in relatively poorer regions, especially in the northern part of the country. This study explored individuals’ experiences with accessing haemodialysis in northern Ghana and was guided by Levesque’s conceptual framework of access to healthcare.

The study utilized a phenomenological design, and participants were recruited through the purposive sampling method. Individuals with ESKD receiving haemodialysis for at least three months were interviewed using a semi-structured interview guide. Trustworthiness was ensured through credibility, transferability, dependability, and confirmability.

Most of the participants had a history of hypertension that progressed to ESKD due to poor management practices – mainly purchasing antihypertensive drugs over the counter without visits to the hypertensive clinic contributed greatly to the delay in diagnosing ESKD in northern Ghana. The geographical location of the dialysis centre and limited dialysis machines were the key barriers to adequate access to dialysis. Many participants had two dialysis sessions per week instead of thrice a week. Some were even having one session per week due to the distance from their residence to the dialysis centre and the costs involved.

Access to haemodialysis for individuals with ESKD in the northern part of the country is relatively limited in many ways compared with that in the southern part of the country. Health policies should include funding for haemodialysis and a collaboration with pharmaceutical companies to consider manufacturing dialysis concentrates to reduce the cost. Additionally, there should be deliberate efforts to design and implement programs to promote ESKD awareness in the country, especially in relatively poorer regions.

Peer Review reports

Approximately 800 million individuals live with chronic kidney disease (CKD) worldwide. This condition disproportionately affects low- and middle-income countries (LMICs), where both prevalence and death rates are considerably high due to inadequate resources to deal with its consequences [ 1 ]. CKD inevitably progresses to end-stage kidney disease (ESKD), and when this occurs, there is a need for renal replacement therapy (RRT ) to save lives [ 2 ]. The most common available RRT modality in Ghana is haemodialysis. Meanwhile, haemodialysis facilities are centred mainly in teaching hospitals in the country, with other administrative regions entirely deprived of any form of RRT [ 3 ]. However, the number of patients with ESKD who require RRT in Ghana is increasing due to the increasing prevalence of hypertension [ 4 ].

The northern part of Ghana has only one publicly funded dialysis centre, which is situated in the only teaching hospital in the area, with fewer than ten functioning haemodialysis machines [ 3 ]. Although there is no reported prevalence of ESKD in northern Ghana, the estimated number of people living with hypertension as well as those with ESKD requiring dialysis suggest an unmet need. Those diagnosed with ESKD have to travel a long distance to receive dialysis service as well as pay out-of-pocket since haemodialysis is not covered by Ghana’s National Health Insurance Scheme (NHIS) [ 3 , 5 ]. Understanding the experiences of individuals diagnosed with ESKD in accessing RRT in a setting with limited haemodialysis centres and considered disproportionately poor within the country is critical in addressing their primary concerns while advocating for appropriate policy changes. This study aimed to provide a deeper understanding of the day-to-day issues that individuals living with ESKD in northern Ghana face while accessing RRT to influence policy decisions within the country.

Conceptual framework

This study was guided by Levesque’s conceptual framework of access to healthcare [ 6 ]. It is a patient-centred approach that describes access to health services as a six-step process: health needs, perception of these needs, seeking health, reaching healthcare, service utilization, and health consequences (Fig.  1 ). The framework has five dimensions – approachability, acceptability, availability and accommodation, affordability and appropriateness – and their matching personal abilities (ability to perceive, ability to seek, ability to reach, ability to pay, and ability to engage).

Approachability refers to the situation where persons with health needs are aware that certain types of services exist and how to access them. The ability to perceive the need for care is the corresponding ability. Acceptability relates to the cultural and societal components that influence people’s willingness to accept certain aspects of services. The ability to seek healthcare is linked to personal autonomy and the capability to choose to seek care. Availability refers to the physical presence of health resources with adequate capability to produce services. The ability to reach health care relates to personal mobility and availability of transportation and occupational flexibility that would enable an individual to physically reach service providers. Affordability refers to a person’s ability to generate economic resources such as income to pay for healthcare services without depleting other assets. Its related ability is the capacity of a person or a household to pay for healthcare services. Appropriateness refers to how well a service satisfies a client’s needs. A client’s ability to participate in and commit to health care is governed by his or her capacity and willingness to participate in and commit to care.

Levesque et al. (2013) Conceptual framework of access to healthcare

This study was carried out at the only publicly funded dialysis centre in the only teaching hospital in northern Ghana that serves the Upper West and East regions, the Northern Region, the Savanna Region, some parts of the Bono East Region, and the northern part of the Volta Region. The dialysis centre, at the time of data collection, had eleven dialysis machines, with only six of them functional. The centre was managed by one nephrologist, assisted by three medical doctors, 2 nephrology nurses and 15 general nurses. The centre can carry out up to five sessions daily, dialyzing up to 30 individuals a day, depending on the number of individuals requiring dialysis, either planned or as emergencies. The regular working hours, however, are between 5 am and 1 am the next day, having staff working in three different shifts. The unit provides services each day of the week. Some individuals may report late or miss their scheduled sessions because of financial factors or some extenuating circumstances, making it difficult to strictly adhere to scheduled dialysis sessions at all times. The majority of these individuals reside in towns that are far from the centre, with travel times between three and seven hours to reach the centre.

Study design and data collection

This study employed a qualitative research design using a phenomenological approach. Purposive sampling was used to recruit the study participants, with sample size informed by the depth of information provided by participants as well as the expected timeframe for the completion of the study [ 7 ]. The inclusion criteria for this study were individuals who were between 18 years and 75 years old, could communicate in English or Hausa, had been diagnosed with ESKD, and had received haemodialysis for at least three months. Those who were critically ill to participate were not interviewed. The selection of the participants was based on their experiences regarding accessing haemodialysis in Northern Ghana and their willingness to participate in the study.

The data collection took place from May to August 2022. After obtaining appropriate approvals, the nurse-in-charge of the dialysis unit introduced the researchers to potential participants. The study’s objectives were discussed with them, and all their questions and concerns were addressed. Individuals who agreed to participate signed or thumb-printed the consent form. All those who were approached agreed to participate in the study except for one who declined to participate without a reason.

Twelve individuals who met the inclusion criteria were recruited. Data were collected through semi-structured, face-to-face interviews with an interview guide developed in line with the study’s objectives and guided by the conceptual framework of access to healthcare [ 6 ]. Participants were interviewed and audio-recorded when they were receiving haemodialysis. It was ensured that no person other than AAI and the participant were present during each interview session, with no other person within the hearing reach of their interactions. The interview guide was assessed following the first two interviews to ensure that it was clear and appropriate for this study. No significant revisions were made to the guide after the first two interviews, so they were added to the main study. Probes were integral to the interview process, as they are essential in generating quality data for the study [ 8 ]. Field notes were also taken during and after each interview to keep records of nonverbal cues observed. All interviews were conducted by AAI in English based on participants’ preferences, lasting between 45 and 62 min. All participants were interviewed once, with no repeat interviews.

Data analysis

Reflexive thematic analysis was employed for this study [ 8 , 9 ]. This involved data familiarization, initial coding, generating initial themes, reviewing themes, refining, defining and naming themes and writing the report. All authors were involved in transcribing the interviews, a process that enhanced familiarization with the data. The researchers repeatedly read each interview transcript while listening to the audio version to ensure its accuracy and marking ideas for coding, mainly led by AAI. The proofread transcripts were uploaded onto the NVivo 12 software version application for organization and management. AAI then read through the transcripts and identified segments of the data that could be assessed in a meaningful way regarding the research objectives and initially coded them. These codes were carefully examined, and patterns among them were identified to generate themes and subthemes that were in line with the thematic areas of the conceptual framework for the study. The identified themes were reviewed, and one that did not fit the thematic patterns of the conceptual framework was constructed as a separate theme. Indeed, the writing of the report does not just happen at the end of the analysis; very much happens concurrently [ 9 ]. However, the final part of this report writing yielded a coherent arrangement of themes to establish a logical connection between them.

Ethical consideration

Ethics approval was obtained from the Committee on Human Research, Publication and Ethics (CHRPE), KNUST (CHRPE/AP/221/22) before the start of the study. Prospective participants were provided with copies of the participant information leaflet to read, and detailed explanations of the contents were provided before the start of the data collection. In-depth responses to all concerns were provided. Participating in an interview about one’s experience with a severe chronic condition could be emotionally stressful. In that regard, it was stated explicitly to all eligible participants that they were under no obligation to participate and that their involvement was entirely voluntary. They could choose not to answer a question if they felt it was intrusive or personal. Eligible participants who agreed to participate signed or thumb-printed the consent form. Participants’ information gathered during the study was treated as strictly confidential, and pseudonyms were used to ensure anonymity.

Characteristics of participants

This study comprised twelve participants, with nine being male and three being female. Nine participants reported having only hypertension before being diagnosed with ESKD. The youngest participant was 30 years old, while the oldest was 59 years old. Eight participants lost their jobs because of ESKD. The characteristics of the participants are summarized in Table  1 , while the main findings in relation to the J-F Levesque, MF Harris and G Russell [ 6 ] conceptual framework are summarized in Table  2 .

Approachability

Lack of previous knowledge of eskd and haemodialysis.

Participants had limited knowledge of ESKD. Almost all participants were aware that they had hypertension or diabetes mellitus but did not know much about ESKD as a complication. They got to know the existence of ESKD and haemodialysis after they were diagnosed. However, once participants received education about the disease at the renal clinic, they gained the corresponding ability to perceive the need to receive some form of treatment for their disease condition.

Acceptability

Denial of diagnosis.

The lack of knowledge about ESKD contributed to an initial denial of the diagnosis and delayed initiation of dialysis among participants, even when they had been told about the available option.

The use of alternative medicine

The delayed initiation of dialysis among participants partly resulted from the use of herbal medicine, as many participants believed that herbal medicines work fast and could cure any disease. However, some participants were driven to use alternative medicine because of the costs associated with biomedicine, perceiving the former as a cheaper option. In the case of denying the diagnosis or using alternative medicine, the desire to choose a treatment option that improves their quality of life was seen as the corresponding ability for acceptability. When they felt that pursuing alternative medicine or denying the diagnosis was not improving their condition, they considered choosing biomedicine.

Cultural beliefs

The use of alternative medicine was also influenced by cultural beliefs, as some participants, particularly the men, believed that visiting the hospital demonstrates weakness and did not want to be seen frequenting the hospital. Due to this belief, those who did not want to use herbal medicines preferred to purchase drugs from pharmacy shops when they felt unwell, rather than visiting a hospital for treatment. Having supportive network was seen as the corresponding ability for this – when the situation became overwhelming for the individuals, their families stepped in to support them, including taking them to the hospital for biomedical care.

Availability

Geographical location of the dialysis centre.

Dialysis services in the northern part of the country are provided solely at the centre of this study. Participants who lived within the city expressed satisfaction with the establishment of a dialysis facility and did not view distance as a barrier to receiving dialysis. However, those who travelled from distant places to the facility frequently encountered challenges. They often could not make it to the facility at scheduled times for their dialysis appointments. Those who travelled over long distances to the centre reduced the frequency or skipped some dialysis sessions because the cost of transportation depleted the funds they had set aside for the dialysis. Some had to relocate to the city so they could be close to the dialysis centre. However, they felt that they could have used the money for the rent to have more dialysis sessions.

In some instances, some participants finished their dialysis session late in the night and could not travel home, so they had to spend an extra day, leading to the loss of more days for work or other productive activities, yet creating extra expenditure for them in such situations. This led to the situation where the availability of transportation or willingness to relocate to a place near the dialysis centre became a corresponding ability for accessing healthcare.

Inadequate dialysis machines

Participants reported that there were insufficient numbers of dialysis machines, and the few available machines frequently broke down. This resulted in long waiting times for dialysis services. It is noteworthy that participants managed to stay over an extended period to receive haemodialysis, giving them access to this lifesaving treatment in the face of all the inadequacies.

Interruption of daily activities

For the majority of participants, getting dialysis meant forgoing other daily activities such as going to work in order not to miss their dialysis appointment, especially in the face of the limited dialysis machines. Thus, their willingness to alter their schedules served as the corresponding ability to give them access to treatment.

Affordability

Economic burden.

Treatment costs put a lot of participants under financial constraints. The continual expenditure over a long period caused their households’ financial resources to deplete. According to participants, they could not bear the cost alone. They depended on their family members and friends for support. Hence, individuals and families, sometimes, struggled to pay their children’s school fees and other expenses.

Lack of insurance cover/Government subsidy

The health insurance scheme in Ghana does not cover the cost of dialysis for individuals with ESKD. Some participants reported using all their salary for treatment, while others used all their trading capital. Due to financial constraints, some participants were compelled to reduce the frequency or forego their scheduled dialysis appointments, which ultimately affected their quality of life but granted them the ability to access dialysis care, even if occasionally and not in line with conventional treatment expectations.

Appropriateness

Satisfaction with care provided.

Receiving care from clinicians who professionally deliver care and cater to patients’ needs is associated with having positive experiences with healthcare. The majority of participants expressed high levels of satisfaction with the professional care they receive, especially from the nurses and this sustained their interest to be active participants in the care being provided despite the numerous challenges described above.

Ways to improve access

Policy makers/government support.

Many individuals diagnosed with ESKD do not commence dialysis after knowing the costs involved. Participants suggested that the government could subsidize the cost by covering half of the entire cost while they bear the other half.

Establishing more dialysis centres

Participants also suggested the need to establish dialysis centres in the regional and district hospitals to reduce travelling expenses and the pressure on the haemodialysis machines that causes their frequent breakdowns. These suggestions provided some assurance to participants that, if they continued accessing haemodialysis care, the suggested expectation may become reality for them at a point and create universal access to haemodialysis for all individuals with ESKD in all parts of the country.

Characteristics of patients with ESKD

The data presented in this study highlight the day-to-day experiences of individuals with ESKD accessing treatment in the northern part of Ghana and enable suggestions to be made to improve accessibility to ESKD. All but one of the participants had hypertension before developing ESKD. This underscores the central role of hypertension in increasing the global prevalence of CKD and, particularly, as the leading cause of ESKD in sub-Saharan Africa [ 4 , 10 , 11 , 12 ]. It is noteworthy that some participants in this study had their hypertension detected at pharmacy shops where they also purchased antihypertensive medicines, without utilizing the routine care and diagnostic services provided by hypertensive clinics within the country. This resulted in a missed opportunity for the early diagnosis of CKD, as these individuals did not have their kidney function monitored over time to slow or halt the progression of CKD to ESKD. The key findings of the study will now be discussed under the key dimensions of the conceptual framework of access to healthcare [ 6 ].

While lack of or inadequate knowledge prevented individuals with symptoms and/or a diagnosis of ESKD from accessing care, it also prevented them from accepting dialysis as a treatment option in the initial stages. Participants mostly denied the diagnosis and delayed the early initiation of treatment, resulting in the late commencement of dialysis, which also contributed to poor prognosis. Perceptions of accessing healthcare in a hospital setting as ‘unmanly’ contributed to delays in diagnosing ESKD among some participants in this study, as such individuals did not have their kidney function monitored over time. Indeed, cultural and religious beliefs as well as the desire for a cure inform the use of herbal medicines [ 15 , 16 , 17 , 18 ]. However, the same are also instrumental in accessing biomedical care, especially when other alternatives do not produce the desired outcomes. it is noteworthy that other participants attributed their use of herbal treatments to their inability to pay the cost of dialysis, a key barrier to accessing treatment for ESKD that has already been reported elsewhere [ 5 , 17 , 18 ].

Generally, almost all participants were aware that they had hypertension, diabetes mellitus or both but had no idea it could lead to the development of CKD or ESKD. They only became aware of this after they were diagnosed with ESKD, and haemodialysis when it was mentioned as the existing form of treatment. This lack of awareness of ESKD and haemodialysis increased the tendency of delayed treatment, as many participants were diagnosed late and had to start haemodialysis urgently to preserve their lives. As a consequence, many individuals with ESKD do not get adequate time to plan and prepare for it, resulting in abrupt discontinuation of haemodialysis after a few weeks or months after initiating it. Providing individuals with ESKD with appropriate information is critical to supporting them in addressing their information needs and decision-making about their care. Indeed, C Guha, P Lopez-Vargas, A Ju, T Gutman, NJ Scholes-Robertson, A Baumgart, G Wong, J Craig, T Usherwood and S Reid [ 13 ] and JT Hughes, N Freeman, B Beaton, A-M Puruntatemeri, M Hausin, G Tipiloura, P Wood, S Signal, SW Majoni and A Cass [ 14 ] report that individuals with CKD feel apprehensive about their prognosis and lack understanding of their condition because they are not provided with adequate information.

A previous report on the number of functioning haemodialysis machines in the study setting was three, but this had increased to six functioning out of a total of eleven haemodialysis machines at the time of data collection for this study [ 3 ]. Although this seems to be an improvement, it remains woefully inadequate as the number of people diagnosed with ESKD who require haemodialysis grows to outweigh the number of machines available. The prolonged waiting times caused by the growing number of people with ESKD receiving dialysis services in the facility, along with insufficient functioning haemodialysis machines and frequent breakdowns, are by far the biggest obstacles participants face when trying to access haemodialysis at the facility. Some of the participants were frequently dissuaded from attending dialysis sessions due to waiting times, which usually forced them to turn to the commonly available and less expensive herbal medicines instead of dialysis. This challenge, unfortunately, is a common theme in resource-restricted settings [ 18 ].

Participants who resided in the city with the dialysis centre expressed satisfaction with the location of the facility, as some could even walk to the facility for haemodialysis services. However, the majority of our participants travelled to the dialysis centre from remote areas and different regions. This frequently made it difficult for them to arrive at the facility on time for their haemodialysis sessions, and some had to travel a day before their scheduled sessions to avoid delays. This was, undoubtedly, more concerning and stressful for such individuals while adding to the cost of their treatment. Geographical location as a barrier to accessing renal services has been widely reported in resource-constrained settings, and that of Ghana is well documented [ 3 , 5 , 18 , 19 , 20 ]. Indeed, it has been shown that individuals who live closer to a healthcare centre have better health outcomes than those who live further away [ 21 ]. There are calls for dialysis centres to be established in regions that lack them to improve access [ 18 , 20 ].

The cost of a haemodialysis session at the time of data collection was GHC300 (USD 25), although there has been a twofold increase, excluding the cost of heparin, which is sold at varied prices in different pharmacy shops. Consequently, families have to contribute money for their kin to stay on dialysis. This continual expenditure ultimately depletes their financial resources, resulting in reduced or missed haemodialysis sessions, which consequently affects their quality of life. Indeed, haemodialysis imposes a substantial financial burden on families and health systems, and the impact is heaviest in resource-constrained settings [ 22 ]. Thus, the impact of the cost of treatment on accessing haemodialysis sessions cannot be overemphasized, especially in such a relatively poorer, resource-constrained setting.

Participants had a positive experience with health professionals, notably nurses whom they described as “good and friendly” in providing care to them. Positive experiences with healthcare professionals were linked to receiving support from staff who professionally delivered care and catered to their needs.

Strengths and limitation of the study

One significant strength of this study is the representation of the contextual gap in the literature – it is the first to explore the experiences of individuals with ESKD accessing RRT in northern Ghana. This provides rich, contextual data on seemingly neglected regions in the country in terms of access to RRT. The use of the conceptual framework by Levesque et al. (2013) allowed various facets of access to RRT to be explored in this study and added to the richness of data generated in this study.

In terms of a key limitation of this study, participants had to be receiving haemodialysis to be included in the study. The perspectives of those who had discontinued dialysis would have offered useful insights into factors that led to their withdrawal. However, it was challenging to identify these individuals because they were not followed up, and some were reported to have passed away.

Reflexivity

Researchers are central to data collection and analysis in qualitative research, making reflexivity an important aspect of the research process [ 8 ]. EAB is a registered nurse and a university lecturer with fourteen years of research experience in the management of ESKD. His interest is in enhancing the quality of life and decision-making experiences of individuals with ESKD. AAI is a registered nurse and a nurse educator. Her active interest in the management of ESKD was piqued during her postgraduate studies in 2021. JKD is a registered nurse, a university lecturer, and a PhD candidate. She has a special interest in using qualitative research methods to address comprehensive health problems in Ghana and beyond. PAA is a registered nurse and a university lecturer. He has a special interest in using qualitative research methods to address comprehensive health problems in Ghana and beyond. All these authors brought their unique perspectives to the design and analysis of data generated in this study.

This study has shed light on the experiences of people with ESKD by revealing the actual issues that they face while accessing dialysis in northern Ghana. Geographical location and distance to the dialysis centre were the greatest obstacles to adequate access to dialysis in this study. While participants were mostly having two dialysis sessions per week, some were having one session per week. The latter group could have had at least two sessions per week but for the extra cost and inconveniences brought about by the distance between their residence and the dialysis centre.

Hypertension plays a key role in the development of CKD in the Ghanaian setting. While attending a hypertension clinic alone may not prevent the development of CKD as a complication, it will provide access to a range of tools and services that will delay its development or progression. Therefore, finding innovative ways to encourage individuals to get professional help in managing hypertension and dissuade them from purchasing antihypertensive drugs over the counter without appropriate consultation will contribute to the early diagnosis and management of CKD.

Improved ESKD awareness creation and screening, particularly in a setting with limited resources, will equip individuals with adequate information about ESKD and improve approachability. Finding innovative ways to reduce the high costs associated with RRT would contribute to improving affordability, making RRT financially accessible to people who need it while preventing the depletion of their financial resources. Strengthening financial support by incorporating RRT into the NHIS or reducing the cost of dialysis will improve access to RRT for many individuals who need this therapy [ 3 , 5 ]. Programs such as partial funding of chronic dialysis, and the government and pharmaceutical industries collaborating to produce materials for dialysis locally rather than importing will help reduce the high dialysis cost for affected individuals and their families. Private and government partnerships could also lead to the establishment of more dialysis centres across the country to improve the availability of RRT services.

Additionally, there is an urgent need to decentralize RRT services to regional and district hospitals to improve availability to individuals in various settings. This could reduce the additional expenses of travelling and increase dialysis frequency while reducing the inconveniences of having to relocate to improve access to RRT.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author upon reasonable request.

Abbreviations

• End-stage kidney disease

Low- and middle-income countries

National Health Insurance Scheme

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Acknowledgements

The authors of the manuscript express their gratitude to the management and staff of the dialysis centre for their support.

The authors of this study received financial support from the KNUST Research Fund (KREF) Seed Grant (VC/OGR/15). The funding body had no specific role in the conceptualization, design, data collection, analysis, decision to publish, or preparation of the manuscript.

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Contributions

EAB and AAI conceptualized the study. AAI collected data. AAI led the analysis and write-up of results, with significant contributions from EAB, JKD and PAA. All authors contributed to the drafting of the manuscript and approved the final version of the manuscript.

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Boateng, E.A., Iddrisu, A.A., Kyei-Dompim, J. et al. A qualitative study on the lived experiences of individuals with end-stage kidney disease (ESKD) accessing haemodialysis in Northern Ghana. BMC Nephrol 25 , 186 (2024). https://doi.org/10.1186/s12882-024-03622-x

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