qualitative research using secondary data

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FOUNDATION ENTRY Evidence-Based Practice
Systematic Reviews
FOUNDATION ENTRY Qualitative Evidence Synthesis
FOUNDATION ENTRY Archiving Qualitative Data
FOUNDATION ENTRY Secondary Analysis of Qualitative Data

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Secondary analysis of qualitative data.

By: Janet Heaton | Edited by: Paul Atkinson, Sara Delamont, Alexandru Cernat, Joseph W. Sakshaug & Richard A.Williams
Publisher: SAGE Publications Ltd
Publication year: 2019
Online pub date: September 17, 2019
Discipline: Sociology
Methods: Secondary data analysis , Qualitative data analysis , Conversation analysis
Length: 10k+ Words
DOI: https:// doi. org/10.4135/9781526421036849600
Online ISBN: 9781529748383 More information Less information
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Secondary analysis is a research methodology in which preexisting data are used to investigate new questions or to verify the findings of previous work. It can be applied to both quantitative and qualitative data but is more established in relation to the former. Interest in the secondary analysis of qualitative data has grown since the mid-1990s, although the idea of reusing qualitative data has been met with a mixed reception by the social research community. This entry describes how the secondary analysis of qualitative data has been variously defined, promoted, practiced, and debated in the United Kingdom, Europe, North America, and Australia. It begins with an overview of the methodology, and how it differs from documentary analysis and other qualitative approaches. This is followed by sections on how qualitative data have been reused in practice, different sources of data, types of qualitative secondary analysis, and examples of previous studies from the author’s own work are described. In the remaining sections, the main epistemological, ethical, and methodological issues discussed in the debates about the methodology are explained. The entry concludes with a summary of the key perspectives and identifies some of the opportunities and challenges ahead in this field.

Introduction

Both quantitative and qualitative data can be subjected to secondary analysis, although there are some important differences in the ways in which the methodology has been conceptualized and utilized in relation to these different types of data. In addition, whereas the secondary analysis of quantitative data is a widely accepted research practice, there has been a great deal of debate about the whys and wherefores of reusing qualitative data, which is examined in this entry.

In contrast to quantitative secondary analysis, which encompasses the reuse of numeric data from research projects and other sources (e.g., hospital audits, insurance databases, census records), qualitative secondary analysis has been defined more narrowly by Janet Heaton (2004), the author of this entry, as referring to the reuse of data from primary research studies (e.g., transcripts of interviews and focus groups, responses to open-ended questions in questionnaires, field notes, research diaries). This distinguishes it from documentary analysis (Plummer, 1983), which involves the examination of other types of qualitative materials and cultural artifacts that were created in the course of everyday life and “found” by researchers (e.g., newspaper entries, personal diaries, photographs), as opposed to “data” that were created for research in the first place.

Qualitative secondary analysis is also distinct from other specialist methodologies, such as conversation analysis and social media analysis, which again refer to particular types of naturalistic qualitative data that were generated in everyday routine interactions and not made for a research project. The methodology is also not to be confused with systematic reviews, syntheses, and meta-analyses of qualitative research, which generally involve going back over the reported findings of previous studies but not back to the original data sets, to review the state of knowledge on a given topic.

These methodological boundaries are not, however, always quite so clear-cut. For example, photographs may also be taken and used as primary data in a research project, transcripts of real-life conversations may be exchanged and reused by conversation analysts, and longitudinal data may be collected in research for both bespoke primary purposes and as a general resource for future studies of change. In these cases, the reuse of such materials may be broadly conceptualized as secondary projects, involving documentary analysis or conversation analysis or longitudinal analysis as the particular analytical approach. More generally, many of the analytical techniques and methods used in qualitative secondary analysis (e.g., thematic analysis) are the same as those used in primary studies, although some may be modified in this context (e.g., sampling strategies), and some may be unique to it (e.g., pooling data from existing multiple data sets). The boundaries between qualitative secondary analysis and these approaches are also liable to change as technical innovations facilitate new ways of working. For example, as qualitative data are increasingly appended to online publications in supplementary files, the possibilities for meta-analyses based on these available data (to synthesize the evidence) and for secondary analyses based on samples of these data (to investigate new questions or verify previous work) are becoming real, blurring the lines between these approaches.

Whether it is appropriate to compare the secondary analysis of quantitative and qualitative data has been queried by Niamh Moore (2007). She has argued that such comparisons have been used as a strategy to support the development of qualitative secondary analysis, when comparisons with other qualitative approaches might be more relevant. Similarly, whether it is appropriate to describe qualitative data as “preexisting” in secondary analysis and to invoke the use/reuse distinction, has been debated. For example, Moore (2007) argues that qualitative data are created and coproduced in (primary and secondary) research practice. She suggests that the reuse of qualitative data is best understood as a process of “recontextualising” and “reconstructing” these data (para. 2.3). However, while Martyn Hammersley (2010) accepts that this is the case and that the primary/secondary and use/reuse distinctions are problematic, he still believes that these terms are useful.

Thus, while the term preexisting is widely used to differentiate secondary from primary qualitative data, this does not necessarily mean that the contexts in which these data were collected and analyzed are not attended to in practice. As Heaton (2004) has argued, data can be collected and explicitly (re)interpreted in multiple (temporal) contexts, although the extent to which this is done varies. Indeed, in her examination of how qualitative data have been reused in practice, she suggested that secondary analysis could be used even more reflexively and creatively than it has been to explore:

the complex relationships between the analyst and the data—the contexts of data interpretation —as well as using the data to explore the perspectives of others—the interpretation of data in context . […] Thus, in post-modern qualitative research, primary researchers would collect and record stories from informants which they or archivists would then preserve for use in possible secondary studies. In using and re-using these data, primary and secondary researchers would work within, and move between, the various contexts in which the stories were told, recorded, rendered for analysis, interpreted and re-interpreted. A series of stories, each a bricolage , based on these primary and secondary data, would be produced and added to the resources available for qualitative researchers to work with. (Heaton, 2004, pp. 123, 124; original emphasis)

This entry explains in more detail the ways in which the secondary analysis of qualitative data has been defined, promoted, practiced, and debated by the international research community. The entry begins with an overview of the sources of qualitative data that have been used in practice, especially in health-related research where qualitative secondary analysis has been particularly embraced. Then, different types of qualitative secondary analysis are outlined. This is followed by a detailed description of three examples of secondary studies from Heaton’s research on health-related topics. These studies are used to illustrate the subsequent examination of the main epistemological, ethical, and methodological issues associated with the practice of reusing qualitative data. The entry concludes with a summary of the key perspectives and some reflections on the opportunities and challenges ahead in this field.

Sources and Usage of Qualitative Research Data

Interest in the possibilities of secondary analysis of qualitative data has grown since the mid-1990s, supported by various developments in research infrastructure, policy, and practice. An increasing number of qualitative secondary studies have been published in North America, Europe, and Australia, drawing on data from three key sources: data archives, informally shared data, and self-collected data.

Many countries now have national data archives and other institutional repositories that hold data sets from the social sciences and humanities. Previously, these tended to focus on the collection of statistical data sets. Where archives were interested in qualitative material, they focused mainly on oral histories and cultural artifacts (e.g., The Institut für Geschichte und Biographie in Germany and the Mass Observation Archive in the United Kingdom), or they accepted qualitative material that was coded for statistical analysis (e.g., the Human Relations Area Files project in the United States). However, an increasing number of archives now accept qualitative data sets from research studies and make them available for secondary analysis.

In Europe, the Consortium of European Social Sciences Data Archives works with associated data services and repositories to promote access to social science research data. Several archives in the United Kingdom and Europe hold qualitative as well as quantitative data sets including the UK Data Archive (UKDA), the Finnish Social Science Data Archive (FSD), the Danish Data Archive, the Czech Social Science Data Archive, the Norwegian Centre for Research Data, the Swedish National Data Service, the Irish Social Science Data Archive, and the beQuali Archive, part of the DIME-SHS program of work coordinated by Sciences Po in France. Elsewhere, in the United States, the Inter-University Consortium for Political and Social Research at the University of Michigan promotes data archiving and its collections include some qualitative data sets, the Henry A. Murray Research Archive in the Institute for Quantitative Social Science at Harvard University also holds longitudinal data sets which contain some qualitative data, and the Qualitative Data Repository at Syracuse University holds data from qualitative and mixed-methods research projects. In Australia, the Australian Data Archive at the Australian National University is made up of several subarchives, including a qualitative section.

Advances in qualitative data archiving have been led by the United Kingdom, where formal sharing of all types of qualitative data across the social sciences has been promoted by a major funder of social research, the Economic and Social Research Council (ESRC). The ESRC established the world’s first specialist facility—the Qualitative Data Archiving Resource Centre (Qualidata)—at the University of Essex in 1994. The center was set up to stimulate and facilitate the archiving of qualitative data sets in existing repositories across the United Kingdom and has since been incorporated within the wider UKDA. Its work has helped to increase the number of qualitative data sets available for secondary analysis and also their accessibility by cataloguing them and by digitizing a selection. Further advances in computing are likely to improve opportunities for preserving qualitative data and to facilitate easier access to data sets online in the future.

Qualitative data archiving and reuse has also been promoted in the United Kingdom through a number of related ESRC policy and funding initiatives. For example, since 1995, ESRC policy has required as a condition of its awards that researchers make available qualitative data sets arising from their work either through the UK Data Service or an appropriate digital repository. Also, when applying for funding from the ESRC, researchers have to demonstrate that the proposed primary research could not be carried out using any existing archived data set. The ESRC has also funded major programs of work and large projects to develop resources and capacity for qualitative secondary analysis. These include a Qualitative Archiving and Data Sharing Scheme, which comprised five projects (2005–2006); the Changing Lives and Times: Relationships and Identities Through the Lifecourse project (2007–2011), which involved the creation of a specialist archive for qualitative longitudinal studies (“Timescapes”) and work to develop ways of analyzing these data; and a Secondary Data Analysis Initiative program, which supported research based on archived quantitative and qualitative data and sought to develop capacity for working with these data (2012–2019).

At the same time, other institutional archives have emerged in the United Kingdom and elsewhere, linked to particular research programs. For example, since 2000, qualitative data from a series of national primary studies carried out by the Health Experiences Research Group (HERG) in the Nuffield Department of Primary Care Health Sciences at the University of Oxford have been retained by them, with participants’ permission, for further use in research and teaching. In these studies, people’s experiences of particular medical conditions and health care in the United Kingdom are captured in semistructured interviews that are digitally recorded and transcribed. Findings from the primary analysis of these data are disseminated via a website (www.healthtalk.org), so that other patients and their families, as well as the public and health-care professionals, can learn from the participants’ first-hand accounts. The findings are presented in the form of thematic summaries of key topics, supported by video, audio, and/or written extracts from the interviews. Copies of the anonymized interview transcripts are also available in full for use in secondary studies by approved users, and subject to a fee and a license agreement.

Over the years, these developments have led to an increase in the number of qualitative data sets archived in the United Kingdom and other countries. A review of the data sets held by some of the data services across Europe found that the UK Data Service had nearly 1,000 qualitative and mixed-methods collections accessible via its catalog, and the FSD had 177 qualitative data sets; other archives had fewer collections including some with under 10 data sets (Bishop & Kuula-Luumi, 2017). The HERG Archive at the University of Oxford has been reported to contain over 75 collections on different conditions and health-related topics (Ziebland & Hunt, 2014).

While official policies in the United Kingdom have promoted the archiving and formal sharing of qualitative data sets, internationally a number of researchers have carried out qualitative secondary studies using data from two other sources. One is through informal data sharing, whereby analysts obtain their data directly from other researchers. The primary researchers who collected the data may or may not be involved in the secondary analysis as a collaborator or in an advisory capacity. Single or multiple data sets may be shared and reused in full or in part, depending on the aims and scope of the secondary research. The other source is analysts’ own data collections. In secondary studies based on these data, sole researchers or whole teams may reuse data from their previous research to investigate new questions or to follow up emergent themes from the primary work.

Little is known about the extent to which these three sources of data are being reused in practice. An early review of qualitative secondary studies published in the international health and social care literature, carried out when the archiving of qualitative data sets was in its infancy, identified 65 studies that involved the reuse of existing data sets (Heaton, 2004). The majority were by researchers based in the United States and Canada ( n = 51), while the remainder were from the United Kingdom ( n = 12), Sweden ( n = 1), and pan-Canada/Sweden ( n = 1). Of the 65 studies, 9 were by researchers who had no involvement in the primary studies, of which only two were based on data that had been formally archived. The majority of studies ( n = 36) were based on data that the researchers had collected themselves. The other studies ( n = 20) were carried out by teams using a mix of data assembled from their own work and other sources.

As investment in the archiving of qualitative data sets has grown and the number of collections available in archives in the United Kingdom and elsewhere has increased, so too have calls for more information on how much this costs—and on how many, and which, of these data sets have been reused, by whom, and with what outputs (Parry & Mauthner, 2005). In the aforementioned review of data sets held by archives across Europe, some information on the usage of the data sets in two European archives was provided, along with a note of the difficulties with the metrics used for this purpose (Bishop & Kuula-Luumi, 2017). It showed that, between 2002 and 2016, the UK Data Service had information on the usage of 444 qualitative and mixed-methods data sets. Of these, 177 (40%) had not been downloaded and the remaining 267 (60%) had been downloaded at least once. The latter included 108 collections that had been downloaded 1–10 times, 60 that had been downloaded 11–20 times, and 15 that had been downloaded more than 100 times. Most of the downloads were by postgraduate students (42%); the rest were by staff in higher education institutions (27%), undergraduates (25%), and other users (6%). The data were being downloaded for the purposes of research (15%), teaching (13%), and learning (64%), the last including students’ assignments and users’ exploratory work. The associated analysis of usage of the qualitative data sets held by the Finnish Data Service found that there were 323 downloads of qualitative data sets in 2015. These were downloaded for undergraduate study (41%), master’s work (28%), teaching (20%), and research (11%).

Some examples of qualitative secondary studies based on the reuse of archived data were also described in the review, together with observations on the difficulties of identifying such studies through literature searches (Bishop & Kuula-Luumi, 2017). As Heaton (2004) noted, even after obtaining and reading candidate publications in full, it can be difficult to decipher the authors’ relationship to the data and other parameters of the work because of incomplete reporting of qualitative secondary studies. Notwithstanding these limitations, in the next section, different types of qualitative secondary analysis are described along with some examples of studies that have been identified from Heaton’s periodic searches of the literature.

Types of Qualitative Secondary Analysis

In her seminal work elaborating the possibilities of qualitative secondary analysis, Sally Thorne (1994, 1998) envisaged different ways in which the methodology might be used. She suggested that, through a process of “analytical expansion,” researchers could make further use of their own data to address “new or extended” questions (p. 548). Through “retrospective interpretation,” they could examine new questions that were raised but not addressed in the context of the primary study. Through “armchair induction,” they could use inductive methods of textual analysis to develop theories. Through “amplified sampling,” they could compare multiple distinct and theoretically representative data sets. And through “cross-validation,” they could “confirm or discount new findings and suggest patterns beyond the scope of the sample in which the researcher personally has been immersed” (p. 267).

A subsequent review of the health and social care literature showed that, just as Thorne anticipated, qualitative data were being reused in this field in various ways, some of which were similar to what she had envisaged (Heaton, 2004). Five types of qualitative secondary analysis were identified based on this review of emerging practice and are described in the following subsections. The first three types vary according to the degree to which the aims of the primary and secondary work converge or diverge; the last two types further distinguish studies according to the combinations of data that are utilized.

Supra Analysis

In this type of secondary analysis, the focus of the secondary study transcends that of the primary work. New empirical, methodological, or theoretical questions are explored that are distinct from the aims of the original research. For example, some analysts have examined the use of metaphors in participants’ accounts of medical encounters using existing data (e.g., Jairath, 1999; Jenny & Logan, 1996). Others have reused data to compare different methods of textual analysis (Atkinson, 1992) and to examine the value of different approaches to biographical analysis (Jones & Rupp, 2000).

Supplementary Analysis

This approach involves the in-depth investigation of an issue, or aspect of the data, that was not addressed, or was only partly covered, in the original research. The focus may be on a particular issue or theme that emerged from the primary work and/or a subset of the data. Unlike supra analysis, the subject of this type of secondary analysis is more closely related to that of the primary work. As a result, in some cases, it may be difficult to distinguish where primary research stops and secondary analysis starts, particularly when the supplementary analysis is carried out by the same researchers who carried out the primary work. This type of secondary analysis was found to be the most common in Heaton’s (2004) review, and it has since been adopted in several studies (e.g., Benbow, Forchuk, & Ray, 2011; Greenhalgh, Stones, & Swinglehurst, 2014; Jowsey, Pearce-Brown, Douglas, & Yen, 2014).

Whereas the first two types of secondary analysis involve the investigation of new questions or emergent issues, the purpose of reanalysis is to verify and corroborate the findings of previous work. Only one example approximating this type of secondary analysis was identified in the review. In it, a form of methodological triangulation was used to re-examine data originally collected by the first author on women’s experiences of losing and gaining weight after dieting (Popkess-Vawter, Brandau, & Straub, 1998). Whereas the primary analysis was based on reversal theory, the secondary analysis was a content analysis performed by two independent coders “with no consideration” for this theory; the secondary analysis was carried out to provide “a validity check for the primary coding and an accuracy check for complete interpretation” (Popkess-Vawter, Brandau, & Straub, 1998, p. 71).

Amplified Analysis

Secondary studies vary not only in terms of the extent to which their aims diverge from, or converge with, the primary studies from which they are derived, but also according to the number and type of primary studies involved. In amplified analysis, two or more qualitative data sets are utilized. These data may be aggregated to form a larger data set or used to compare different populations. For example, Carl May and colleagues (2004) reused data from a series of studies carried out between 1995 and 2001 to examine how family doctors conceptualized chronic illness and its management in their consultations with patients. An increasing number of this type of secondary analysis has been published since Heaton’s (2004) review, using multiple data sets. Examples include secondary studies based on two data sets (e.g., Long, Sque, & Addington-Hall, 2000), three data sets (e.g., Evans et al., 2012; Murray et al., 2010), four data sets (e.g., Cheraghi-Sohi et al., 2013; Riegal & Dickson, 2016), and six data sets (e.g., Davidson, Edwards, Jamieson, & Weller, 2019). In one study, 13 data sets were reused in one phase of a study (Squires et al., 2015), which also shares characteristics of assorted analysis, described in the next subsection.

Assorted Analysis

In assorted analysis, secondary analysis of qualitative data is combined with additional primary research and/or documentary analysis of relevant materials. For example, in the aforementioned study by Janet Squires and colleagues (2015), a secondary analysis of 13 data sets from four countries was conducted in the second phase of a multiphased investigation of the effects of context on the implementation of interventions. Interviews with 312 health-care professionals were re-examined to learn about the barriers and enablers to the application of research evidence in practice. In the first and third phases, a concept analysis of context and additional semistructured interviews with professionals were conducted to further investigate the ways in which context influences the use of evidence in clinical practice. The results from these three phases were synthesized, and the content validity of the resulting context framework was tested in a final stage of the work.

In this section, three examples of secondary studies drawn from Heaton’s work, based on the different sources of qualitative data identified earlier, are described in depth.

Secondary Study 1: Young Adults With Chronic Illness Project (Using Archived Data)

This project, titled “Mastering chronic illness while growing up: the experiences of young adults and the advice they give to their contemporaries,” was funded by the ESRC (2010–2012). The data used in this study were drawn from three studies that were independently carried out by the HERG at the University of Oxford between 2006 and 2008 and subsequently archived by them for possible use in future research and teaching, with the participants’ consent. As noted earlier, the primary studies were designed to provide public information on what it is like to learn that one has a particular medical condition, what managing it involves, and how it affects people’s lives. A number of topics were covered in the interviews including several that were common across the three studies. For example, the participants were usually asked what advice they would give to other young adults in a similar situation and likewise to health-care professionals who work with people with their condition.

The secondary study came about after the author reviewed the online extracts from two of the HERG projects and obtained a small sample of the full interview transcripts to help define the aims of a proposed secondary study. Two of the primary researchers who had carried out most of the interviews were also consulted to further check that the idea for the secondary study was relevant and viable using the proposed data sets. This process led to a revised set of aims and objectives being defined in relation to three of the data sets in the HERG Archive (Heaton, 2014). The overall aim of the resulting secondary study, which is an example of both supra analysis and amplified analysis outlined earlier, was to examine young adults’ sense of mastery of their chronic illness and how this related to their lived experience of managing the condition while they were growing up. It investigated what it meant to them to successfully manage a long-term condition while growing up, whether and how they achieved this sense of mastery, and how they in turn were helping others by sharing their experiential knowledge online. The study was led by the author of this entry and carried out in consultation with the primary researchers. A group of young adults who were familiar with the HERG program of work were also consulted about the analysis and interim findings in the course of the work.

The three data sets comprised interviews with young people and young adults aged 15–29 who had type 1 diabetes, epilepsy, and a mix of other long-term conditions. Each study had aimed for a maximum variation sample and included people from across the United Kingdom. The type 1 diabetes data set contained interviews with over 35 individuals aged 15–29, diagnosed between the age of 1 and 24 years. The epilepsy data set contained interviews with over 35 individuals aged 16–28, diagnosed between the ages of 3 and 22 years. The long-term conditions data set contained interviews with over 30 people aged 16–29 who had one or more chronic conditions, including juvenile arthritis, epilepsy, muscular dystrophy, asthma, diabetes, cystic fibrosis, and sickle cell disease. Some of the individuals were diagnosed at birth, some as late as 19 years. Overall, 103 of the 105 young adults in the three studies were diagnosed or had symptoms before the age of 20 years and hence had experience of living with a long-term condition for some or all of their teenage years. Two participants were excluded from the secondary analysis because they developed their condition later in life and hence had no experience of growing up with the condition as a young person.

A combination of analytical approaches was used in the secondary study. Thematic analysis was used to identify similarities and differences in participants’ sense of mastery across the sample. This type of analysis, working across cases, helped to map the range of views held by the participants on what it meant to them to control and master their condition, and whether they felt they had ever achieved this sense of mastery. Specialist software was used to help facilitate this part of the analysis, along with charts showing person-by-person views on particular topics of interest. Narrative analysis was also used to examine the ways in which the young adults described the development of their sense of mastery, through a more in-depth analysis of a selection of individual interviews representing different types of experiences. This form of analysis allowed for the relationship between individual participant’s sense of mastery and his or her personal lived experience of a particular condition, as constructed and represented through the narrative, to be examined in detail.

Together, the combined approaches enabled variation in young adults’ ideas about control and mastery to be observed within and across the three original studies. They also provided an insight into how, through the medium of the interviews, the participants shared what they had learned from their experiences for the benefit of others with the same condition. As the research progressed, some of the concepts and tools of complexity theory were also introduced and used to develop the analysis and interpret the findings. The analysis showed how the young adults captured and conveyed in their accounts the mundane complexity of living with and managing a chronic illness, challenging the traditional medical view of the linear relationship between adherence to a therapeutic regime and the achievement of control and autonomy (Heaton, Räisänen, & Salinas, 2016).

This research identified a need for health-care policy and practice to move away from a linear approach centered on promoting control through better adherence, toward a multipronged approach which supports young people and young adults not only to achieve control of their condition but also to retain their autonomy; helps them to build their capacity to adapt to the manifold factors that influence their control and/or autonomy while growing up; and uses testimonies of their experiences of living with a chronic illness as a means of helping others understand and deal with the complexity, uncertainty, and personal nature of the experience.

Secondary Study 2: Dementia Project (Based on Informal Data Sharing)

This ongoing study is based on anonymized qualitative data that were informally shared with the author by the primary research team, following discussions with the lead researcher about the original work and after ethical approval was obtained for the proposed secondary work. The primary study was titled the Memory Impairment and Dementia Awareness Study and funded by the ESRC (2006–2010). In it, participants’ awareness of and coping with memory changes following a diagnosis of dementia were examined using longitudinal and mixed methods. The study was set in north Wales, in the United Kingdom, where a sample of 101 people with early-stage dementia and a relative or friend who knew them well were recruited. As part of the study, these participants were interviewed separately, at two time points, around 12 months apart, generating a large qualitative data set.

The secondary study is a supplementary analysis of the experiences of a subset of the people with dementia who were living alone and their nonresident relatives or friends who were supporting them. There were 24 dyads in this situation. All but four of these dyads were interviewed twice, giving a total of 88 interviews. The sample of people with dementia includes 21 women and three men with dementia, aged 68–91 (average 81); they had Mini-Mental State Examination scores ranging from 19 to 29. The sample of nonresident relatives or friends includes 17 women and seven men, aged 33–79 (average 55), of whom 22 were relatives (11 daughters, 6 sons, 1 sister, 1 brother, and 3 nieces), and two were female friends. All the people with dementia were living alone at the time of the first interview, except for one person who was only living alone at the second interview, after his disabled daughter had left home. At the second round of interviews, two of the participants with dementia had moved into care homes.

In the early stages of examining how the people with dementia were managing to live at home independently, it was noted that they often expressed the desire to continue living at home for as long as possible. Both the people with dementia and their nonresident relatives or friends had been asked for their views on the future and whether they ever discussed it together. The participants also talked about these and related topics at other points in the interviews; hence, there was good coverage of these matters in the data set. Using specialist software, a coding framework was developed to index the participants’ views concerning their future outlook and the ways in which they approached the future. The coded material was retrieved and manually summarized and arranged in grids designed to facilitate analysis of the themes by dyads and by the participants’ sociodemographic characteristics. The ongoing analysis is examining how the people with dementia and their nonresident relatives or friends perceived the future, how they each approached it, and how their respective future outlooks relates to their present well-being.

Secondary Study 3: Hospital Discharge Project (Using Self-Collected Data)

This project was done on the back of a study titled “Carers perspectives on hospital discharge procedures for young adults with physical and complex disabilities,” which was funded by the National Health Service (NHS) National Research and Development Programme for People with Physical and Complex Disabilities, from 1995 to 1997. The purpose of the primary study was to examine informal carers’ perspectives on hospital discharge procedures and the adequacy of continuing care arrangements, for adults aged 18–65 with physical and complex disabilities. It followed the introduction of the Carers (Recognition and Services) Act 1995 in England, which was intended to make health and social care services take into account the needs of informal carers when planning hospital discharge and making arrangements for continuing care in the community for patients.

The primary study was conducted by Heaton, early in her career, with two colleagues at the University of York. Carers of patients with physical and complex disabilities were recruited through various NHS hospital settings in the north of England. The sites included Special Care Units (Younger Disabled Units, a spinal injury unit, and a burn unit) and acute wards. Carers’ and, where possible, patients’ views on hospital discharge and continuing care arrangements were obtained through semistructured interviews conducted up to 3 months after discharge. Managers and professionals from health-care and social care services were also interviewed to explore their involvement in planning hospital discharge and continuing care arrangements. A total of 58 interviews were conducted with 22 carers, 13 of the 21 adults with physical and complex disabilities, 15 managers, and 14 professionals.

A secondary analysis of the data from the study was conducted as part of the author’s part-time doctoral research work. It needed to be distinct from the primary study in order to meet the requirements of the degree. Initially, the aim of the secondary study was to examine carers’ and patients’ experiences, and developments in policy and practice concerning carers and hospital discharge procedures, from a Foucauldian perspective. Analysis of policy documents and official guidelines began while the primary study was underway. Once the interviews had been completed and the data set compiled, carers’ experiences of hospital discharge and continuing care arrangements were examined in the new theoretical context. This aspect of the work was carried on after the primary study had been completed.

As the secondary analysis progressed, it became focused on the temporal organization of hospital discharge from the Special Care Units where the majority of patients had stayed. The primary study had identified issues around the timing of hospital discharge and delays in the implementation of community care packages, but these were examined alongside other matters relevant to the main aims of the research and they were not examined in any depth or in any theoretical context. The secondary doctoral work provided an opportunity to examine the problems that carers and patients reported with various time gaps or disjunctures in the discharge process in more depth, drawing on concepts and theories from the sociology of time; hence, it may be described as an example of supra analysis outlined earlier in this entry.

The results of the secondary analysis showed how the temporal organization of discharge from Special Care Units varied from standard hospital discharge procedures outlined in policy and guidelines in that it was often staggered over a period of time (Heaton, 2001). It also varied depending on whether patients had been admitted to Special Care Units following an emergency hospital admission or for reassessment following a decline in their condition. In the former emergency cases, the timing of discharge was negotiated throughout their stay, whereas, in the latter elective cases, the length of stay was usually shorter and predefined from admission, and these patients also generally went home at weekends.

Analysis of the carers’ and patients’ experiences revealed how, even in Special Care Units where often lengthy stays meant that there was time to plan and phase discharge, the process did not always go smoothly. Some of the problems reported were indicative of underlying tensions between the rhythms and routines of hospital care, community care, and domestic family life. For example, delays in the implementation of arrangements that had been agreed in discharge planning, including provision of equipment and adaptations, demonstrated a lack of working to common time frames operated by hospitals and social services, housing and benefit agencies. In addition, the timetabling of service provision for families was not always synchronized with carers’ needs. While the provision of paid carers after discharge enabled some informal carers to continue working, the scheduling of these hours and the unreliability of paid carers created difficulties for the families. In order for discharge to work more smoothly, it was suggested that there was a need for hospital discharge procedures and community care arrangements to be better coordinated around, and more responsive to, the mundane rhythms and routines of everyday family life.

Issues in Qualitative Secondary Analysis

As noted earlier, the promotion of qualitative secondary analysis has been met with a mixed reception by the research community. Since the mid-1990s, there has been a growing debate over the epistemological, ethical, and methodological aspects of archiving and reusing qualitative data, which are described in the following subsections.

Epistemological Issues

Much of the debate around the reuse of qualitative data has been about whether secondary analysis of this type of data is compatible with the basic tenets of qualitative inquiry. A key concern is whether qualitative data collected to address a primary research question can be reused to address other research questions (Heaton, 2004; Hinds, Vogel, & Clarke-Steffen, 1997; Thorne, 1994, 1998). This problem of data “fit” is seen as a particular problem in qualitative research, where the collection of data might be refined during a study in an iterative process that is responsive to emerging findings, resulting in a data set that is tailored to the primary research questions. Use of open-ended topic guides in interviews can also result in a rich but relatively unstructured data set, where a range of topics are covered in varying degrees of depth, depending on the direction of the interviews, which may not provide sufficient material on the secondary topics of interest. However, others have argued that secondary analysis allows for unexpected topics that emerge from primary research to be followed up and that these are worthy topics of investigation precisely because they have emerged spontaneously (Corti & Thompson, 2004).

Another concern is whether researchers can effectively reuse qualitative data that other researchers have collected (Berg, 2008; Corti & Thompson, 2004; Hammersley, 1997; Heaton, 2004; Mauthner, Parry, & Backett-Milburn, 1998; Thorne, 1994). When the secondary analyst was not involved in collecting the data, he or she does not have the benefit of personal knowledge and experience of being involved in the fieldwork that produced the data. As a result, the secondary analyst lacks the primary researcher’s detailed knowledge and understanding of the context in which the data were collected; he or she also has a relatively distant relationship to the data, which may be compounded by the data set having being anonymized and stripped of other identifying features (although this last point also applies to the primary researchers who conducted the interviews, who also often work with the data in its anonymized state). For some, this means that the secondary analysis of qualitative data in general is not tenable (Mauthner et al., 1998) or that it is not appropriate in relation to some types of qualitative studies where context is particularly important, such as data from participatory research and interpretive phenomenological research, as well as some types of qualitative data, such as field notes (Chauvette, Schick-Makaroff, & Molzahn, 2019).

It has been noted, however, that this problem of not having “been there” is not particular to secondary analysis, as many qualitative studies are carried out by teams of primary researchers whose members are variously involved in the fieldwork (Heaton, 2004). Others have also argued that there are techniques for capturing and sharing contextual information, such as primary researchers providing metadata for their data set; archivists documenting missing data; analysts consulting the researchers who collected the data where this is feasible; and analysts using different processes of reflexivity and critical distance in their work (Corti & Thompson, 2004; Fielding, 2004; Haynes & Jones, 2012). Yet others have suggested, more radically, that the distance of the secondary analyst can be an advantage (Mason, 2007) and that all analysis is relational, given that the production and interpretation of data are always framed by and conducted in relation to the contexts of the investigations (Heaton, 2004; Moore, 2007).

Yet another concern relates to one of the suggested uses of secondary analysis—reanalysis in order to confirm or discount previous research findings. Whether the results of qualitative research can or should be verified in the same ways as studies using statistical methods has been queried by some (e.g., Hammersley, 1997). Here, tensions in the epistemological foundations of quantitative and qualitative research, and across different traditions of qualitative inquiry, are most apparent. Methods of verification and reproduction of findings derived from positivist-based approaches, which underpin the data-sharing imperative in quantitative research, are anathema to many (but not all) qualitative researchers, for whom alternative strategies have been developed to help establish the trustworthiness and authenticity of their work. However, there is some limited support for the idea of preserving data for replication in both quantitative and qualitative research (e.g., Schneider, 2004), although in practice such studies are rare.

Ethical Issues

There has been a lot of debate about the ethics of archiving and sharing qualitative data sets. Studies of researchers’ attitudes to qualitative data archiving and sharing have found some reluctance to deposit this type of data in archives, linked to their concerns about breaching trust and undermining their relationship with participants, which they perceive to be privileged and special (Broom, Cheshire, & Emmison, 2009; Yardley, Watts, Pearson, & Richardson, 2014). There has been less research on participants’ attitudes to the archiving and sharing of qualitative data. However, one study on data sharing in research in general found that there was conditional public support for it—but also low levels of awareness about existing practices and uses of data (Aitken, de St. Jorre, Pagliari, Jepson, & Cunningham-Burley, 2016).

Whereas in the past it was left to researchers and archivists to decide whether or not to archive qualitative data and, if so, how to protect participants’ identities and sensitive information, increasingly this decision has been shifted to participants themselves. It is now more common for informed consent to be sought from participants in advance, at the point of data collection in the primary study. However, given that information on exactly how the data will be reused, by whom, and for what purposes, will not be available at this point, only a generic form of consent can be obtained at this time (although researchers can give a general idea and some examples of the sorts of uses they anticipate might be possible and permissible). The alternative is to seek consent retrospectively, as and when particular secondary studies are planned. However, this is problematic because it requires that participants’ names and contact details are retained, kept up to date, and can be shared and used for this purpose. Recontacting participants also presents researchers with logistical and ethical difficulties when people have changed address or may have died.

When consent for reuse has not been obtained at the point of data collection, whether analysts decide to seek fresh consent for a secondary study may partly depend on who collected the data and on the type of qualitative secondary analysis planned. For example, when a supplementary analysis is carried out by the same researchers who collected the primary data, and when the aims of the secondary and primary research are relatively congruent, the analysts may adjudge that there is no need to seek further ethical approval (e.g., Bristowe, Selman, Higginson, & Murtagh, 2018). In some cases, data have also been anonymized in order to facilitate secondary analysis when there was no consent for reuse, and it was not feasible to recontact the participants (e.g., Thomson, Bzdel, Golden-Biddle, Reay, & Estabrooks, 2005). It can, however, be difficult to remove all the information that might prevent participants’ identities being inferred when working with small and unique populations, without stripping the data of contextual information and rendering it meaningless for secondary analysis (Parry & Mauthner, 2004).

In addition to obtaining informed consent and anonymizing data, there are other ways in which the interests of participants can be further safeguarded in qualitative secondary studies. One option is for primary researchers to impose conditions of access to the data when they deposit it with an archive. This can limit access to approved users, or for approved uses, or for a period of time; users can also be asked to sign license agreements confirming that they will respect the confidentiality of participants and the stated terms of usage. Another option is for proposed secondary studies to be submitted to research ethics committees for independent review of whether they are consistent with the terms that participants consented to in the primary study and for assessment of the potential benefits and risks of any harm resulting from the work (e.g., Long-Sutehall, Sque, & Addington-Hall, 2010). A further safeguard is for analysts to involve stakeholders in the design and/or conduct of secondary studies to help ensure that they are acceptable to the wider community (Thorne, 1998), although this has seldom been done (for an example of patient and public involvement in a secondary study, see Exemplars, Secondary Study 1).

Methodological Issues

Methodological work relating to qualitative secondary analysis has tended to focus on the technicalities of preserving qualitative data sets for archiving, rather than the process of reusing the resulting data. Thus, archivists in the United Kingdom and other countries have provided guidelines for researchers on how to obtain informed consent, assign copyright, anonymize data, and create metadata to facilitate qualitative data archiving. A minimum set of guidelines for contextual information required to facilitate the secondary analysis of interview data has also been proposed from a researcher’s perspective (Berg, 2008). An international review of guidelines on the deposition and reuse of qualitative data in archives found that 38% of social science repositories had written guidelines (Antes, Walsh, Strait, Hudson-Vitale, & DuBois, 2018). The review also found variation in the 12 sets of guidelines that were located and that archivists sometimes imposed additional requirements on a case-by-case basis. It concluded that, while some variation and flexibility in guidelines was appropriate, the findings raised questions about best practices in qualitative data archiving and reuse. The same may be said about informal data sharing and the reuse of analysts’ own data, for which there are no guidelines for researchers about the best ways of preserving, sharing, and reusing their data outside of the regulated environment of a dedicated data archive, and where practices are likely to be even more variable.

There are relatively few guidelines for researchers on how to conduct, report, and review the performance of such studies. Criteria for assessing the quality and completeness of primary data sets, and for determining the fit of secondary research questions, have been proposed by Pamela S. Hinds, Ralph J. Vogel, and Laura Clarke-Steffen (1997). Some of the information that might be relevant to include in reports of qualitative secondary studies have also been identified, including about the sources of the data sets used, how the aims of the secondary study related to that of the primary work, whether ethical approval was obtained for the secondary work, and how the secondary researchers’ previous (lack of) involvement in the primary work affected the analysis (Heaton, 2004). In general, however, there still remains a lack of guidelines and codes of conduct for researchers and others to follow on how to design, carry out, report, and appraise the quality of qualitative secondary studies.

The main resources available for researchers to learn more about the methodology are the increasing number of worked examples and commentaries that have been published exploring different aspects of the process of doing qualitative secondary analysis in depth. Examples of these works include a description of the genesis of a secondary study (Heaton, 2014); a detailed account of the process of “sorting” data from two data sets (Long-Sutehall et al., 2010); a worked example of a qualitative secondary analysis and synthesis (Turner, Percival, Kessler, & Donovan, 2018); accounts of different approaches to and processes involved in the secondary analysis of qualitative data, including unsuccessful attempts (Hinds, Vogel, & Clarke-Steffen, 1997); and illustrations of particular approaches to analyzing qualitative longitudinal data (e.g., Davidson et al., 2019; Irwin, 2013; Tarrent, 2016).

Secondary analysis of qualitative data has a complex history. Since the mid-1990s, the retention and reuse of qualitative data from primary research studies has been officially promoted in the United Kingdom and Europe and facilitated by data archives. At the same time, qualitative researchers in these and other countries have pioneered the use of qualitative data obtained through informal data sharing and from their own collections. While official policies have focused on developing the methodology in relation to the formally archived data sets, the underground movement of qualitative secondary analysts has developed the approach more organically, grounded in the practice of qualitative research.

Different patterns of usage have emerged, depending on whose qualitative data have been reused, by whom, for what purposes, and in what combinations, with each permutation raising unique epistemological, ethical, and methodological issues. New patterns of usage continue to emerge, for example, around the growing interest in big data and the potential for pooling multiple archived data sets for secondary analyses based on these new “assemblages” of qualitative data (Davidson et al., 2019). Each turn opens up scope for fresh debates over whether it is appropriate and acceptable for qualitative data to be deconstructed, fragmented, pooled, and reconstituted in this way, and what can be gained by reworking these data in different ways.

With these various developments, the debates surrounding the archiving and secondary analysis of qualitative analysis have crystallized into three broad positions. For some researchers, the notion of reusing qualitative data for anything other than historical research is anathema (e.g., Mauthner et al., 1998) or inappropriate in relation to certain types of qualitative studies or data (e.g., Chauvette et al., 2019). For others, archiving qualitative data is a way of extending the reach of social research, enabling researchers to make more use of existing valuable qualitative data sets, and providing the limitations of the secondary analyst’s distance from the data can be minimized (e.g., Hammersley, 1997). For yet others, the secondary analysis of qualitative data collected by others or by oneself in the past provides an opportunity to carry out social research where the relational nature of data—and the role of distance itself, including its affordances and limitations—is recognized as being integral to qualitative data analysis, where the multiple and mutable contexts of data collection and interpretation can potentially be writ large (e.g., Heaton, 2004; Mason, 2007; Moore, 2007).

Finally, while both official and underground support for qualitative secondary analysis continues to grow, there remains some uncertainty over how it should be promoted in the future (Heaton, 2008). For example, should policy continue to be centered on formal data archiving and sharing or should a mixed economy be officially supported, when informal data sharing and the reuse of self-collected data are also facilitated? Should all qualitative data sets be archived or a selection and, if the latter, based on what criteria? And while there has been some research on researchers’ attitudes to the sharing and reuse of qualitative data, very little is known about the public understanding of and attitudes to the retention and reuse of qualitative data from research, or about how the public and other stakeholders can be involved in the conduct of qualitative secondary studies. There remains a need for debate about the rights and responsibilities of participants, researchers, funders, ethics committees and review boards, social science organizations, publishers, and other stakeholders involved in primary and secondary research, and how their respective interests can be balanced in social research policy and practice.

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Qualitative Secondary Research A Step-By-Step Guide

Claire Largan
Theresa Morris - University College Birmingham, UK
Description

Perfect for those doing dissertations and research projects, it provides an accessible introduction to the theory of secondary research and sets out the advantages and limitations of using this kind of research. Drawing on years of teaching and research experience, the authors

· Offer step-by-step advice on how to use qualitative secondary data · Walk you through each stage of the research process · Provide practical, ethical tools to help you with your project · Show you how to avoid the potential pitfalls of using secondary data.

Clear and easy to understand, this book is a ready-made toolkit for successfully using qualitative secondary data. From beginner level and beyond, this no-nonsense guide takes the confusion and worry out of doing a secondary research project.

See what’s new to this edition by selecting the Features tab on this page. Should you need additional information or have questions regarding the HEOA information provided for this title, including what is new to this edition, please email [email protected] . Please include your name, contact information, and the name of the title for which you would like more information. For information on the HEOA, please go to http://ed.gov/policy/highered/leg/hea08/index.html .

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I recommend this book to students and more experienced researchers who want to conduct qualitative secondary research. It is a timely and accessible guide.

Overall, the authors have written a well thought out, accessible and comprehensive book, which is a welcome addition to a relatively small literature on secondary data and documentary analysis.

I will definitely be using this in my own research, to ensure that I have not forgotten important elements in my research design and analysis, and will be recommending chapter 5 (ethics in qualitative secondary research) as additional reading in the ethics chapter of my forthcoming book aimed at undergraduate student

Concise and coherent text on QSR. Have been searching for a text that is accessible for students that will allow them to reflect on their progress as researchers while also equipping them with a voice to justify their choices. This meets those parameters.

This is an excellent introductory text for a methodology that has become accepted practice and increasingly expected by research funding bodies. Making full use of collected data is an ethical principle and will prepare students well for future practice.

Very good resource for students and graduates alike. Definitely a must-read and should-work-with book :-)

The contents of the book allows students to carry out research with ease, the book has an easy flow and many useful areas for undergraduates to follow and complete any research work

This book should be an essential companion for anyone undertaking a research project. This underrepresented topic area is broken down into comprehensive chapters that provide a practical approach whilst prompting critical reflection also. Highly recommended.

a well-crafted and accessibly-written textbook which willl be very useful to students at several levels

This is an essential and accessible book for all undergraduate and postgraduate students wishing to carry out secondary research. This book offers a step-by-step guide into the processes of qualitative research, whilst allowing readers to develop their own critical thinking skills.

Miss Novlett Mitchell University College Birmingham

This book provides insights about qualititavie research and it is very useful for every dissertation module. I am so glad I had the opportunity to include it in my module

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Find My Rep

Qualitative Secondary Research A Step-By-Step Guide

Claire Largan
Theresa Morris - University College Birmingham, UK
Description

I recommend this book to students and more experienced researchers who want to conduct qualitative secondary research. It is a timely and accessible guide.

Overall, the authors have written a well thought out, accessible and comprehensive book, which is a welcome addition to a relatively small literature on secondary data and documentary analysis.

Very good resource for students and graduates alike. Definitely a must-read and should-work-with book :-)

The contents of the book allows students to carry out research with ease, the book has an easy flow and many useful areas for undergraduates to follow and complete any research work

a well-crafted and accessibly-written textbook which willl be very useful to students at several levels

Miss Novlett Mitchell University College Birmingham

This book provides insights about qualititavie research and it is very useful for every dissertation module. I am so glad I had the opportunity to include it in my module

Preview this book

For instructors.

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Secondary Data Analysis: Ethical Issues and Challenges

Research does not always involve collection of data from the participants. There is huge amount of data that is being collected through the routine management information system and other surveys or research activities. The existing data can be analyzed to generate new hypothesis or answer critical research questions. This saves lots of time, money and other resources. Also data from large sample surveys may be of higher quality and representative of the population. It avoids repetition of research & wastage of resources by detailed exploration of existing research data and also ensures that sensitive topics or hard to reach populations are not over researched ( 1 ). However, there are certain ethical issues pertaining to secondary data analysis which should be taken care of before handling such data.

Secondary data analysis

Secondary analysis refers to the use of existing research data to find answer to a question that was different from the original work ( 2 ). Secondary data can be large scale surveys or data collected as part of personal research. Although there is general agreement about sharing the results of large scale surveys, but little agreement exists about the second. While the fundamental ethical issues related to secondary use of research data remain the same, they have become more pressing with the advent of new technologies. Data sharing, compiling and storage have become much faster and easier. At the same time, there are fresh concerns about data confidentiality and security.

Issues in Secondary data analysis

Concerns about secondary use of data mostly revolve around potential harm to individual subjects and issue of return for consent. Secondary data vary in terms of the amount of identifying information in it. If the data has no identifying information or is completely devoid of such information or is appropriately coded so that the researcher does not have access to the codes, then it does not require a full review by the ethical board. The board just needs to confirm that the data is actually anonymous. However, if the data contains identifying information on participants or information that could be linked to identify participants, a complete review of the proposal will then be made by the board. The researcher will then have to explain why is it unavoidable to have identifying information to answer the research question and must also indicate how participants’ privacy and the confidentiality of the data will be protected. If the above said concerns are satisfactorily addressed, the researcher can then request for a waiver of consent.

If the data is freely available on the Internet, books or other public forum, permission for further use and analysis is implied. However, the ownership of the original data must be acknowledged. If the research is part of another research project and the data is not freely available, except to the original research team, explicit, written permission for the use of the data must be obtained from the research team and included in the application for ethical clearance.

However, there are certain other issues pertaining to the data that is procured for secondary analysis. The data obtained should be adequate, relevant but not excessive. In secondary data analysis, the original data was not collected to answer the present research question. Thus the data should be evaluated for certain criteria such as the methodology of data collection, accuracy, period of data collection, purpose for which it was collected and the content of the data. It shall be kept for no longer than is necessary for that purpose. It must be kept safe from unauthorized access, accidental loss or destruction. Data in the form of hardcopies should be kept in safe locked cabinets whereas softcopies should be kept as encrypted files in computers. It is the responsibility of the researcher conducting the secondary analysis to ensure that further analysis of the data conducted is appropriate. In some cases there is provision for analysis of secondary data in the original consent form with the condition that the secondary study is approved by the ethics review committee. According to the British Sociological Association’s Statement of Ethical Practice (2004) the researchers must inform participants regarding the use of data and obtain consent for the future use of the material as well. However it also says that consent is not a once-and-for-all event, but is subject to renegotiation over time ( 3 ). It appears that there are no guidelines about the specific conditions that require further consent.

Issues in Secondary analysis of Qualitative data

In qualitative research, the culture of data archiving is absent ( 4 ). Also, there is a concern that data archiving exposes subject’s personal views. However, the best practice is to plan anonymisation at the time of initial transcription. Use of pseudonyms or replacements can protect subject’s identity. A log of all replacements, aggregations or removals should be made and stored separately from the anonymised data files. But because of the circumstances, under which qualitative data is produced, their reinterpretation at some later date can be challenging and raises further ethical concerns.

There is a need for formulating specific guidelines regarding re-use of data, data protection and anonymisation and issues of consent in secondary data analysis.

Acknowledgements

The authors declare that there is no conflict of interest.

Fielding NG, Fielding JL (2003). Resistance and adaptation to criminal identity: Using secondary analysis to evaluate classic studies of crime and deviance . Sociology , 34 ( 4 ): 671–689. [ Google Scholar ]
Szabo V, Strang VR (1997). Secondary analysis of qualitative data . Advances in Nursing Science , 20 ( 2 ): 66–74. [ PubMed ] [ Google Scholar ]
Statement of Ethical Practice for the British Sociological Association (2004). The British Sociological Association, Durham . Available at: http://www.york.ac.uk/media/abouttheuniversity/governanceandmanagement/governance/ethicscommittee/hssec/documents/BSA%20statement%20of%20ethical%20practice.pdf (Last accessed 24November2013)
Archiving Qualitative Data: Prospects and Challenges of Data Preservation and Sharing among Australian Qualitative Researchers. Institute for Social Science Research, The University of Queensland, 2009 . Available at: http://www.assda.edu.au/forms/AQuAQualitativeArchiving_DiscussionPaper_FinalNov09.pdf (Last accessed 05September2013)

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Secondary Research

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Secondary research: definition, methods, & examples.

19 min read This ultimate guide to secondary research helps you understand changes in market trends, customers buying patterns and your competition using existing data sources.

In situations where you’re not involved in the data gathering process ( primary research ), you have to rely on existing information and data to arrive at specific research conclusions or outcomes. This approach is known as secondary research.

In this article, we’re going to explain what secondary research is, how it works, and share some examples of it in practice.

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What is secondary research?

Secondary research, also known as desk research, is a research method that involves compiling existing data sourced from a variety of channels . This includes internal sources (e.g.in-house research) or, more commonly, external sources (such as government statistics, organizational bodies, and the internet).

Secondary research comes in several formats, such as published datasets, reports, and survey responses , and can also be sourced from websites, libraries, and museums.

The information is usually free — or available at a limited access cost — and gathered using surveys , telephone interviews, observation, face-to-face interviews, and more.

When using secondary research, researchers collect, verify, analyze and incorporate it to help them confirm research goals for the research period.

As well as the above, it can be used to review previous research into an area of interest. Researchers can look for patterns across data spanning several years and identify trends — or use it to verify early hypothesis statements and establish whether it’s worth continuing research into a prospective area.

How to conduct secondary research

There are five key steps to conducting secondary research effectively and efficiently:

1. Identify and define the research topic

First, understand what you will be researching and define the topic by thinking about the research questions you want to be answered.

Ask yourself: What is the point of conducting this research? Then, ask: What do we want to achieve?

This may indicate an exploratory reason (why something happened) or confirm a hypothesis. The answers may indicate ideas that need primary or secondary research (or a combination) to investigate them.

2. Find research and existing data sources

If secondary research is needed, think about where you might find the information. This helps you narrow down your secondary sources to those that help you answer your questions. What keywords do you need to use?

Which organizations are closely working on this topic already? Are there any competitors that you need to be aware of?

Create a list of the data sources, information, and people that could help you with your work.

3. Begin searching and collecting the existing data

Now that you have the list of data sources, start accessing the data and collect the information into an organized system. This may mean you start setting up research journal accounts or making telephone calls to book meetings with third-party research teams to verify the details around data results.

As you search and access information, remember to check the data’s date, the credibility of the source, the relevance of the material to your research topic, and the methodology used by the third-party researchers. Start small and as you gain results, investigate further in the areas that help your research’s aims.

4. Combine the data and compare the results

When you have your data in one place, you need to understand, filter, order, and combine it intelligently. Data may come in different formats where some data could be unusable, while other information may need to be deleted.

After this, you can start to look at different data sets to see what they tell you. You may find that you need to compare the same datasets over different periods for changes over time or compare different datasets to notice overlaps or trends. Ask yourself: What does this data mean to my research? Does it help or hinder my research?

5. Analyze your data and explore further

In this last stage of the process, look at the information you have and ask yourself if this answers your original questions for your research. Are there any gaps? Do you understand the information you’ve found? If you feel there is more to cover, repeat the steps and delve deeper into the topic so that you can get all the information you need.

If secondary research can’t provide these answers, consider supplementing your results with data gained from primary research. As you explore further, add to your knowledge and update your findings. This will help you present clear, credible information.

Primary vs secondary research

Unlike secondary research, primary research involves creating data first-hand by directly working with interviewees, target users, or a target market. Primary research focuses on the method for carrying out research, asking questions, and collecting data using approaches such as:

Interviews (panel, face-to-face or over the phone)
Questionnaires or surveys
Focus groups

Using these methods, researchers can get in-depth, targeted responses to questions, making results more accurate and specific to their research goals. However, it does take time to do and administer.

Unlike primary research, secondary research uses existing data, which also includes published results from primary research. Researchers summarize the existing research and use the results to support their research goals.

Both primary and secondary research have their places. Primary research can support the findings found through secondary research (and fill knowledge gaps), while secondary research can be a starting point for further primary research. Because of this, these research methods are often combined for optimal research results that are accurate at both the micro and macro level.

Sources of Secondary Research

There are two types of secondary research sources: internal and external. Internal data refers to in-house data that can be gathered from the researcher’s organization. External data refers to data published outside of and not owned by the researcher’s organization.

Internal data

Internal data is a good first port of call for insights and knowledge, as you may already have relevant information stored in your systems. Because you own this information — and it won’t be available to other researchers — it can give you a competitive edge . Examples of internal data include:

Database information on sales history and business goal conversions
Information from website applications and mobile site data
Customer-generated data on product and service efficiency and use
Previous research results or supplemental research areas
Previous campaign results

External data

External data is useful when you: 1) need information on a new topic, 2) want to fill in gaps in your knowledge, or 3) want data that breaks down a population or market for trend and pattern analysis. Examples of external data include:

Government, non-government agencies, and trade body statistics
Company reports and research
Competitor research
Public library collections
Textbooks and research journals
Media stories in newspapers
Online journals and research sites

Three examples of secondary research methods in action

How and why might you conduct secondary research? Let’s look at a few examples:

1. Collecting factual information from the internet on a specific topic or market

There are plenty of sites that hold data for people to view and use in their research. For example, Google Scholar, ResearchGate, or Wiley Online Library all provide previous research on a particular topic. Researchers can create free accounts and use the search facilities to look into a topic by keyword, before following the instructions to download or export results for further analysis.

This can be useful for exploring a new market that your organization wants to consider entering. For instance, by viewing the U.S Census Bureau demographic data for that area, you can see what the demographics of your target audience are , and create compelling marketing campaigns accordingly.

2. Finding out the views of your target audience on a particular topic

If you’re interested in seeing the historical views on a particular topic, for example, attitudes to women’s rights in the US, you can turn to secondary sources.

Textbooks, news articles, reviews, and journal entries can all provide qualitative reports and interviews covering how people discussed women’s rights. There may be multimedia elements like video or documented posters of propaganda showing biased language usage.

By gathering this information, synthesizing it, and evaluating the language, who created it and when it was shared, you can create a timeline of how a topic was discussed over time.

3. When you want to know the latest thinking on a topic

Educational institutions, such as schools and colleges, create a lot of research-based reports on younger audiences or their academic specialisms. Dissertations from students also can be submitted to research journals, making these places useful places to see the latest insights from a new generation of academics.

Information can be requested — and sometimes academic institutions may want to collaborate and conduct research on your behalf. This can provide key primary data in areas that you want to research, as well as secondary data sources for your research.

Advantages of secondary research

There are several benefits of using secondary research, which we’ve outlined below:

Easily and readily available data – There is an abundance of readily accessible data sources that have been pre-collected for use, in person at local libraries and online using the internet. This data is usually sorted by filters or can be exported into spreadsheet format, meaning that little technical expertise is needed to access and use the data.
Faster research speeds – Since the data is already published and in the public arena, you don’t need to collect this information through primary research. This can make the research easier to do and faster, as you can get started with the data quickly.
Low financial and time costs – Most secondary data sources can be accessed for free or at a small cost to the researcher, so the overall research costs are kept low. In addition, by saving on preliminary research, the time costs for the researcher are kept down as well.
Secondary data can drive additional research actions – The insights gained can support future research activities (like conducting a follow-up survey or specifying future detailed research topics) or help add value to these activities.
Secondary data can be useful pre-research insights – Secondary source data can provide pre-research insights and information on effects that can help resolve whether research should be conducted. It can also help highlight knowledge gaps, so subsequent research can consider this.
Ability to scale up results – Secondary sources can include large datasets (like Census data results across several states) so research results can be scaled up quickly using large secondary data sources.

Disadvantages of secondary research

The disadvantages of secondary research are worth considering in advance of conducting research :

Secondary research data can be out of date – Secondary sources can be updated regularly, but if you’re exploring the data between two updates, the data can be out of date. Researchers will need to consider whether the data available provides the right research coverage dates, so that insights are accurate and timely, or if the data needs to be updated. Also, fast-moving markets may find secondary data expires very quickly.
Secondary research needs to be verified and interpreted – Where there’s a lot of data from one source, a researcher needs to review and analyze it. The data may need to be verified against other data sets or your hypotheses for accuracy and to ensure you’re using the right data for your research.
The researcher has had no control over the secondary research – As the researcher has not been involved in the secondary research, invalid data can affect the results. It’s therefore vital that the methodology and controls are closely reviewed so that the data is collected in a systematic and error-free way.
Secondary research data is not exclusive – As data sets are commonly available, there is no exclusivity and many researchers can use the same data. This can be problematic where researchers want to have exclusive rights over the research results and risk duplication of research in the future.

When do we conduct secondary research?

Now that you know the basics of secondary research, when do researchers normally conduct secondary research?

It’s often used at the beginning of research, when the researcher is trying to understand the current landscape . In addition, if the research area is new to the researcher, it can form crucial background context to help them understand what information exists already. This can plug knowledge gaps, supplement the researcher’s own learning or add to the research.

Secondary research can also be used in conjunction with primary research. Secondary research can become the formative research that helps pinpoint where further primary research is needed to find out specific information. It can also support or verify the findings from primary research.

You can use secondary research where high levels of control aren’t needed by the researcher, but a lot of knowledge on a topic is required from different angles.

Secondary research should not be used in place of primary research as both are very different and are used for various circumstances.

Questions to ask before conducting secondary research

Before you start your secondary research, ask yourself these questions:

Is there similar internal data that we have created for a similar area in the past?

If your organization has past research, it’s best to review this work before starting a new project. The older work may provide you with the answers, and give you a starting dataset and context of how your organization approached the research before. However, be mindful that the work is probably out of date and view it with that note in mind. Read through and look for where this helps your research goals or where more work is needed.

What am I trying to achieve with this research?

When you have clear goals, and understand what you need to achieve, you can look for the perfect type of secondary or primary research to support the aims. Different secondary research data will provide you with different information – for example, looking at news stories to tell you a breakdown of your market’s buying patterns won’t be as useful as internal or external data e-commerce and sales data sources.

How credible will my research be?

If you are looking for credibility, you want to consider how accurate the research results will need to be, and if you can sacrifice credibility for speed by using secondary sources to get you started. Bear in mind which sources you choose — low-credibility data sites, like political party websites that are highly biased to favor their own party, would skew your results.

What is the date of the secondary research?

When you’re looking to conduct research, you want the results to be as useful as possible , so using data that is 10 years old won’t be as accurate as using data that was created a year ago. Since a lot can change in a few years, note the date of your research and look for earlier data sets that can tell you a more recent picture of results. One caveat to this is using data collected over a long-term period for comparisons with earlier periods, which can tell you about the rate and direction of change.

Can the data sources be verified? Does the information you have check out?

If you can’t verify the data by looking at the research methodology, speaking to the original team or cross-checking the facts with other research, it could be hard to be sure that the data is accurate. Think about whether you can use another source, or if it’s worth doing some supplementary primary research to replicate and verify results to help with this issue.

We created a front-to-back guide on conducting market research, The ultimate guide to conducting market research , so you can understand the research journey with confidence.

In it, you’ll learn more about:

What effective market research looks like
The use cases for market research
The most important steps to conducting market research
And how to take action on your research findings

Download the free guide for a clearer view on secondary research and other key research types for your business.

Related resources

Market intelligence 10 min read, marketing insights 11 min read, ethnographic research 11 min read, qualitative vs quantitative research 13 min read, qualitative research questions 11 min read, qualitative research design 12 min read, primary vs secondary research 14 min read, request demo.

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Open access
Published: 27 May 2024

Understanding patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, Uganda, a qualitative study

Priscilla Namaganda 1 ,
Patience Nantume 2 ,
Kelvin Roland Mubiru 3 ,
Adelliine Twimukye 2 &
Christine Sekaggya Wiltshire 2

BMC Health Services Research volume 24 , Article number: 666 ( 2024 ) Cite this article

195 Accesses

Metrics details

In 2016, Uganda added Hydroxyurea (HU) to the list of essential drugs to treat sickle cell disease SCD. However, Hydroxyurea utilization has been low for several countries in sub-Saharan Africa. This study examined patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, in Uganda.

To understand the patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease, we conducted a parallel convergent mixed methods study at outpatient departments of two national referral hospitals in Uganda from October 2022 to January 2023. The cross-sectional mixed-methods study employed both quantitative and qualitative methods. We collected survey data from a systematic sample of 259 participants and conducted individual interviews with a purposive sample of 40 participants (20 adolescents or their caregivers and 20 adult patients with SCD) and interviewed them individually on their knowledge, perceptions, barriers, and facilitators of HU utilization. Descriptive data were analyzed using Stata 16, whereas qualitative data were analyzed thematically using an inductive approach supported by NVivo 12 software. We triangulated data to determine the concordance of qualitative and quantitative data.

The study enrolled 40 participants for qualitative interviews and 259 patients for quantitative, with an average age of 16, over half being female, 46% having secondary education, and 96% unmarried. The prevalence of HU use was 78%. The study identified three themes as follows: Patient barriers at the individual including Inadequate knowledge about HU, Persistent pain, Poor adherence to HU, Poor communication with health care workers, and Psychosocial and emotional challenges. At the facility level, long queues and poor quality of care, drug-related side effects that affect HU, and drug stock-outs were reported. Myths, rumors, and misconceptions about HU, and gender-related barriers were reported to affect HU utilization at a community level. Facilitators for the use of HU and recommendations for improvement. Facilitators included perceived benefits, long duration on HU, information sharing by healthcare workers, availability of complementary drugs, confirmation of diagnosis, and availability of medication at public health facilities or private pharmacies. Patients suggested continuous adherence support, encouragement from healthcare workers, sensitization about benefits and risks, a peer-to-peer approach, and financial support for adolescents and women to start businesses to resolve financial problems.

Implementing the use of HU has been challenging in Uganda and needs improvement. Facilitators to hydroxyurea use have been highlighted, though Patient-identified barriers at individual, facility, and community levels that need to be resolved. The experiences and insights shared by our participants provide invaluable guidance for increasing the uptake of HU. Further studies are needed to establish validated instruments to assess patients’ pain communication and adherence to the HU regimen.

Peer Review reports

In Africa, sickle cell disease (SCD) contributes substantially to mortality in children younger than 5 years. The global burden has been quantified, with SCD accounting for 6.4% of the under-5 mortality across all of Africa [ 1 ]. However, in countries with greater sickle allele frequencies and lower childhood mortality rates, such as Uganda, SCD may account for up to 15% of under-5 mortality [ 2 ]. The mortality rate in adult patients with SCD is not known presumably because of a lack of accurate data but is thought to be high as more children with SCD survive into adolescence and adulthood, they are faced with poor access to comprehensive sickle cell care with a continuing risk of complications or death [ 2 ].

Hydroxyurea is one of the approved drugs for treating sickle cell disease [ 3 ]. The mechanism by which hydroxyurea works is rather unknown although its efficacy in the treatment of SCD is generally attributed to its ability to boost the levels of fetal hemoglobin (Hb F, α 2 γ 2 ) hence lowering the concentration of HbS. HbF is protective against clinical severity, and low-percentage HbF is associated with a higher risk of developing Vaso-occlusive complications, organ damage, and early death. Systemic review studies have documented the efficacy of hydroxyurea in adult patients with SCD [ 3 ]. In Uganda, the NOHARM and REACH studies reported a reduction in SCD-related complications with the use of hydroxyurea and appeared to be safe for children with SCD without increased severe malaria, infections, or adverse events [ 4 , 5 ].

Hydroxyurea was added to the list of essential drugs in Uganda in 2016 but it is not readily available [ 6 ].

The number of patients with SCD currently taking hydroxyurea is about 33%; this is undocumented data from patient charts. This low percentage of use could be due to limited access and availability of drugs, practitioners’ low knowledge of HU use, and patients’ fear of drug toxicities. Therefore, this study sought to assess barriers to HU treatment among this cohort of patients and document them. This study focused on knowledge, perceptions, barriers, and facilitators of adolescent and adult patients with sickle cell disease regarding HU because there is minimal data and even the data that is available focuses on children, not adults. Reasons reported by authors in studies done included fear of cancer and other side effects, not wanting to take a medication, not wanting to have required laboratory monitoring, or not thinking the medication would work [ 7 ]. The primary goal and benefit of patient-centered care is to improve individual health outcomes, not just population health outcomes, although population outcomes may also improve [ 8 ]. Not only do patients benefit, but providers and healthcare systems benefit as well, through (a) Improved satisfaction among patients and their families, (b) Enhanced reputation of providers among healthcare consumers, (c) Better morale and productivity among clinicians and ancillary staff, (d) Improved resource allocation, (e) Reduced expenses and increased financial margins throughout the continuum of care [ 8 ].

With greater use of HU for eligible patients, it is expected that fewer patients will be hospitalized for complications of SCD, resulting in a net reduction of national healthcare costs for patients with SCD [ 9 ]. In addition, the broader appropriate use of HU in patients with SCD should improve their quality of life and productivity [ 9 ]. With this information, we can lobby the government and/or donors to avail recourses for continued supply of HU and other resources like laboratory capacity that aid us in giving comprehensive care to patients with SCD. Therefore, we conducted a mixed methods study to identify the knowledge, perceptions, barriers, and facilitators of adolescent and adult patients with sickle cell disease regarding HU and suggest interventions to facilitate HU uptake in Uganda. We hypothesized that there was a relationship between patient-related barriers and hydroxyurea use among patients with SCD.

Study design

From October 2022 to January 2023, we conducted a cross-sectional mixed-methods study (parallel convergent) with qualitative components using a phenomenological approach.

Study setting

The study was conducted at the Sickle cell clinic in Mulago Hospital sickle cell clinic and Kiruddu Hospital, hematology. The Sickle Cell Clinic is an innovation for treating children with SCA with acute pain and other medical complications as outpatients. The Mulago sickle cell clinic attends to children, adolescents, and adult patients with SCD. The Kiruddu clinic attends to adolescent and adult patients with SCD in addition to other hematological conditions. Both Mulago and Kiruddu are national referral hospitals in Uganda and are teaching hospitals for Makerere University, College of Health Sciences. The Mulago SCD clinic cares for more than 300 patients with SCD. The hematology clinic at Kiruddu Hospital cares for 100 to 150 patients with SCD.

Sample size estimation

We purposively selected 40 participants to participate in the qualitative interviews. The actual sample size (40) was determined by how many participants were required to explore all the research questions and to achieve thematic saturation. It was difficult to determine the ideal sample size for achieving these objectives at the early stage of the research. Therefore, the process of participant selection was iterative, involving several rounds of selection and interviews as will be necessary to achieve thematic saturation. Data was collected until no new themes or patterns emerged from participants interviewed participants selected from each study site. 20 individual interviews were carried out in each selected site, making a total of 40 Individual interviews from two study sites. Patients were interviewed to identify the barriers to the use of hydroxyurea through In-depth interviews using an in-depth interview form developed for the study with 20 purposively selected patients per site. The criteria for the selection of patients for in-depth interviews were 10 adults (5 males and 5 females), and 10 adolescents (5 males and 5 females) who have ever missed appointments or drugs from each clinic. Also, their understanding, experiences, and what they had heard regarding using Hydroxyurea were assessed. All the interviews were conducted from the hospital premises and in a language preferred by the participants and audio recorded. All adolescents were interviewed with their caretakers and each caretaker signed a parent-guardian consent form in addition to the adolescent signing an assent form.

Eligibility for HU use was (a) Three or more sickle cell-associated moderate to severe pain crises in 12 months, requiring hospitalization or management at a health facility, (b) Sickle cell-associated pain that interferes with daily activities and quality of life, (c) History of severe and/or recurrent acute chest syndrome, (d) Severe symptomatic chronic anemia that interferes with daily activities or quality of life(severe symptomatic anemia criteria was assessed based on the need for blood transfusion). if participants responded yes to any of the above criteria, they were eligible for HU use. Patients with other sickle cell syndromes – e.g., Hb SC disease, S/ß thalassemia, pregnant, severely ill study, and declined to participate in the study were excluded.

The sample size for quantitative was estimated using Leslie Kish’s (1964) formula for sample size calculation. With a prevalence of HU use at 33.7% as reported by a study done in Oman [ 10 ] and at a 0.05 level of significance, the sample was estimated at 260 participants. The sickle cell clinic at Mulago Hospital runs daily and that at Kiruddu on Thursday of every week. Patients with SCD who came for assessment were screened using a questionnaire developed for the study and each one of them was informed about the study with the help of a research assistant. Patients who are taking HU or have taken HU were recorded. Patients who are not taking HU were assessed to determine if they fit the criteria for starting HU as described above. If participants responded to any of the above criteria, they were enrolled in the study after obtaining informed consent from research assistants. Patients enrolled were asked to fill out a standardized questionnaire with the help of research assistants. Information obtained included (a) demographic i.e. age, gender, address, level of education, religion, and occupation, (b) time when patient joined the clinic, past and current medications, history of SCD-associated complications and history of admissions, (c) status of HU use and reasons for not initiating HU and possible solutions to these challenges.

Study variables

Independent variables.

We collected data on; age, gender, address, level of education, religion, occupation, commonest complications of SCD experienced, indications for HU use, and the common medications used.

Dependent variables

Our outcomes were willingness to use HU, perceptions about HU use, reasons for not initiating HU and possible solutions to these challenges.

Procedures for data collection and instruments

Quantitative data.

We used a systematic sampling method for the survey. For the quantitative objective, all patients with SCD were screened and those who met the inclusion criteria were enrolled in the study. We therefore included every 4th participant in the survey beginning with the 4th adult until the sample size was attained. We used maximum variation purposive sampling to select the participants for the in-depth interviews. For the survey, we used an interviewer-administered semi-structured questionnaire to collect data on the 259 participants using a questionnaire administered by a research assistant. For the 40 individual interviews, we used an interview guide which was used to collect perceptions on HU. Interviews lasted approximately 10–20 min. Data collection occurred over three months and transcription began as data collection was ongoing.

Data quality control

The questionnaire was pre-tested on 5 participants from the same community to ensure that the questions were clear and understandable to participants. The Questionnaires and Interview guide were translated into the local language and then back-translated to English as part of standard operating procedures such that they have retained their meaning. The research assistants were adequately trained for 7 days and routinely supervised while in the field and the data they were collecting by the principal investigator to ensure the correct use of data collection tools and adherence to ethical principles.

To ensure reliability, we set clear research questions to expand on responses. Qualitative data was collected separately from quantitative data (parallel convergence). Codes and qualitative findings were crosschecked to improve reliability. Consensus between two or more observers was done to establish reliability. We used NVivo version 12 software to manage narrative data.

To ensure validity, all transcripts were checked for accuracy and completeness by the interviewers to enhance data validity. Feedback from research participants (member check) after analysis and interpretation was obtained in an organized results dissemination workshop. Documentation of member checks and interpretations that were changed because of member feedback was done. Triangulation combined quantitative (survey) and qualitative data collection methods (in-depth interviews) in this single study. Triangulation of various data collection methods was used. These included questionnaires, Topic guides (In-depth interviews), transcripts, field notes, and Literature review. This was aimed at verifying information, or facts obtained from using other methods.

Data management and analysis

Quantitative data collected were double-entered into the computer using EPI-DATA (version 3.1) software to minimize data entry errors. Data was exported to STATA version 15 for data cleaning and analysis. Data was then backed up and archived using codes to ensure confidentiality. The descriptive characteristics were presented using frequencies and percentages or proportions in tables. Numerical data was summarized using means and standard deviations for normally distributed continuous data or medians and interquartile ranges for continuous but skewed variables. The prevalence of hydroxyurea use among adult patients was calculated as a proportion of adult patients with SCD who have ever used hydroxyurea out of the total number of participants who are eligible for HU use with its 95% confidence intervals.

The Qualitative study was guided by the ethical principles of the Association of Social Anthropologists. These principles included protecting research participants, anticipating harm, avoiding undue intrusion, rights to confidentiality and anonymity, intellectual property rights, and participant involvement in research. Recording and storing participants’ information was done in a manner that facilitated greater confidentiality and anonymity, including the use of pseudonyms to describe participants during interviews, separation of participants’ ID information from their transcripts, storage of participant information in secured locations and password-protected hard drives, removal of participants names in all research dissemination outputs. Research assistants obtained informed consent prior to start of individual interviews. The Individual interviews were conducted in one-to-one and face-to-face format to provide greater privacy and assure participants of confidentiality. We conducted an inductive thematic analysis collected from individual interviews with different respondent categories such as (20 adolescents or their caregivers and 20 adult patients with SCD). The analysis examined meanings, themes, and patterns that manifested texts from the interviews regarding HU use in two hospitals in Uganda. All audio recordings from open-ended questions based on interview guides were transcribed verbatim. Two coders Individually read each transcript line by line and identified key concepts to develop a coding framework. A coding framework based on eight transcripts that were manually reviewed and coded to generate the initial set of codes that were crosschecked iteratively between two coders (AT & PN) for consensus and to improve reliability. All transcripts were imported into NVivo version 12 software for open coding and management of data. An initial codebook was developed, and the revised codes were grouped into categories and identified themes. Illustrative quotations for each emergent theme were selected for the results narration.

283 participants were assessed and 259 were enrolled in the study as shown in the flow chart, Fig. 1 .

Flow chart showing enrolment profile

Characteristics of adults and adolescents

The total sample size was 259, 221 participants were recruited from the Mulago Hospital sickle cell clinic and 38 from Kiruddu Hospital. At the Mulago sickle cell clinic, the average age was 16 years, with 58.5% being female, and 46% having an education level of secondary. At Kiruddu Hospital, the median age was 24, with 71.1% being female, and 48.1% having an education level of secondary. The average cost of transport to and from the hospital was 11,000 Ugx. The average duration of HU use was 24 months. All this is summarized in Table 1 .

Eligibility for HU use

259 participants met the criteria for HU, 202(78.0%) were taking HU, and 57 participants met the criteria for HU use but were not taking HU. Of those that use HU, 92.1% were current users and 7.9% were past users. HU use among eligible patients is shown in Table 2 .

Patient-related barriers to HU use

Painful crisis was the most common indication for HU use reported in 94.6% of participants, followed by chest syndrome (28%), anemia, 19.4%, and avascular necrosis, 24.7%. indication for HU use is summarized in Table 3 above.

Indications for initiating HU use

The study identified three themes as follows: Patient barriers at the individual, facility, and community level as shown in Tables 4 , 5 and 6 , and 7 . Facilitators for the use of HU and recommendations for improvement as displayed in Table 8 .

Individual barriers

Financial constraints.

The most common reason for stopping HU use was lack of affordability reported by 81.2% of participants. This information is summarised in Table 5 below. The major challenge among 19 (48%) participants from qualitative interviews was financial constraints to buy medication, and food and meet the transport costs to access care.

“There are times when I skipped my medicine doses… Sometimes it was due to money; if I didn’t have the money to buy the tablets. Because we are supposed to buy the tablets—sometimes you go to the pharmacy, and they are expensive, yet you don’t have money. You use the little money you must buy some tablets and they get finished, and I have no money to buy more. So, I first miss some days, and a few times I depend on Panadol and Ibuprofen for emergencies. I take it in case I don’t have the medicine not daily—they told me I could take it occasionally if I am constrained financially and unable to buy the medicine”.

-- IDI, 18, female, adult, Mulago.

Most adults and adolescents were not able to pay for prescribed sickle cell drugs and other ailments because they were expensive.

“… There was no money to buy it because a packet is shs.15,000; just one packet… yet buying it is expensive and I have no money. Now I no longer stay with my father; my mother stays home; she does not work. If my father goes to work and takes a long time there, my mother is suffering to buy the medicine. She buys it for shs. 15,000 but it gets finished in a week, so she must look for more shs. 15,000 to buy another dose”. -- IDI, 19, Male, adolescent, Mulago.

Most of the adolescents said they were unemployed and were mainly dependent on their parent’s support, which was sometimes limited:

“If there is transport because I am always at home. Ever since they fired me from my job, I have been at home”. -- IDI, 3 1, female, adolescent, Mulago.

Inadequate knowledge

Inadequate knowledge about HU among adolescents and adults by few participants. Generally, most individual participants from qualitative (27, 68%) and quantitative (231 (88.2%) across all age categories had a high level of awareness about hydroxyurea and its related benefits as shown in Table 5 below. For the few adult participants who lacked awareness about Hydroxyurea, it was because health workers did not inform them about it, and some had never started on it.

Because I didn’t know about it [Hydroxyurea]; they had never told me about it. So, the doctors asked me, “Have you ever used hydroxyurea?” and I told them, “I don’t know about it . -- IDI, 22, male, adult, Mulago.

Among adolescents, there was low knowledge about HU due to limited sensitization as they did not receive enough health education. Moreover, they reported rumors, myths, and misconceptions about sickle cell in the community.

“Most times what scares them, they say, “Once you start taking the drug and then stop you die”, it scares them as well—okay, the rumors are so many”. -- IDI, 11, Male, youth, Mulago.

Some participants said there was a lack of awareness about Hydroxyurea in the community because they were not sensitized and had not come across people who swallowed it:

“Community people have not been well oriented about Hydroxyurea benefits by the doctors… they have not heard anyone on it so far”. -- IDI, 16_ adult, Mulago.

Persistent pain affected the use of HU

Nearly half (38%) of the participants who participated in individual interviews reported persistent pain despite taking painkillers as a major challenge that hindered proper adherence.

They used to administer painkillers to me since I had a lot of pain! And if the pain comes, it is so strong; it is severe because at school there is a health facility they would do their best with the painkillers but they had no effect. So, they would bring me here” . -- IDI, 28, female, youth, Mulago.

Some participants said they could hardly walk to the health facility due to severe pain, hence missed appointments and picking drugs.

I missed my appointment because I was sick and bedridden, admitted to the hospital. Huh! I feel pain. There are times I could hardly walk…. -- IDI, 10, female, adult, Mulago.

Poor adherence to HU

43% (17, 43%), mainly adolescents from qualitative interviews reported Poor treatment adherence. They missed taking sickle cell medication on time or stopped it for a month or more. The major reasons for missing drugs were pain, running out of drugs, missed appointments to pick drug refills, and lack of funds to buy drugs when they ran out:

“So, when I swallow it in the morning, it takes like 30 minutes, then I go back to normal. But sometimes I miss doses because the medicine is finished before the people at home bring for me more, because I am not near home. They bring it within one week because they also must look for the money to buy it. -- IDI, 28, female, adolescent, Mulago.

Another reason for poor adherence to sick cell medication was forgetfulness. Some participants said they came back from school tired and slept off while others could be distracted by television:

“We leave preps at around 9 pm and I must wash my uniform, I must do this or that. So after, you are exhausted and you just fall on the bed; maybe you say, “Let me read this and swallow the medicine, then I sleep” but before you realize it, they are ringing the bell to wake students up. So that is when I have forgotten and then I remember”. --IDI, 28, female, adolescent, Mulago.

One participant said they had poor access to medication when traveling due to the loss of a loved one and suffered too much pain. They also missed appointments due to illness and admission.”

“I had lost someone. Sometimes, I would be ill and have a lot of pain. I felt too much pain. I missed a dose… Still, I have ever missed taking a dose that was because of my illness. I was admitted”. --IDI, 9, male, adult, Mulago.

Some participants missed drugs due to academic reasons. They could not leave school during the exam period to pick treatment refills.

“There is a time I missed some appointments that in turn made me miss drugs…I am in boarding school and my appointment was due during my examination period, so I was unable to come”. -- IDI, 19, Male, adolescent, Mulago).

One caretaker said adolescent was tired of swallowing several tablets daily hence missed taking drugs on some days.

“Talking about being fed up with the medicine; sometimes I say[caregiver], “I will give you shs.500 if you[adolescent] swallow the medicine”. So personally, when I noticed that on the weekend, she swallows 2000 mg, I said, “Okay, let us leave Monday” and we went against the doctor’s instructions. So honestly, we gave Monday a break; we don’t swallow medicine because she swallowed 2 tablets on Sunday and 2 tablets on Saturday, so we rested on Monday. We resume swallowing it on Tuesday till Sunday, then we rest on Monday. But eh! She totally didn’t like it! So, we discussed and came to that agreement, so that is how we do it”. -- IDI, 30, female, caregiver, Mulago.

Missed routine clinic visits or appointments affected adherence.

Most participants [ 11 ] missed routine clinic visits or appointments mainly because they lacked money for transport to the health facility. The cost of transport for some participants was Ugx 20,000.

“I have never missed a clinic appointment and you said yes…I missed because my mother did not have money for transport, yet she had debts—she had to work so that she could pay the debt she had”. --IDI, 21, female, adolescent, Mulago.

Missed appointments hindered participant’s access to medical care and routine sickle cell monitoring.

“Ever since we started this medication, they told us not to miss any appointments because she must come back and monitor her progress ever since she started hydroxyurea. I believe we won’t miss it again. Previously, we could buy our own medicine but this time round, we won’t miss clinic appointments again”. -- IDI, 14, caregiver, female, Mulago.

Transport constraints were the major reasons for missed appointments. Some participants said they lived at far-off distances from health facilities.

“Since sometimes I live far away and sometimes there is no money for the transport fare… Because there are times when I am suffering symptoms of the illness and I have no transport to bring me to the health Centre for instance now, I just borrowed the money to bring me here. So, I fall sick and swallow the medicine, then I feel better”. -- IDI, 31, female, adult, Mulago.

Only one participant reported that a busy work schedule hindered appointment-keeping.

“I miss appointments because sometimes I am weak, or sometimes I might be busy. I am healthy, but the work I am doing keeps me busy. That is what usually happens”. -- IDI, 22, male, adult, Mulago.

Psychosocial, and emotional challenges

Some participants said they lacked a positive outlook on life. They emphasized they lacked motivation, zeal, and interest to continue taking HU drugs because they had lost hope for a complete cure for sickle cell:

“Sometimes, we lack the zeal to come since we do not have the hope to get completely cured but if the doctor tells you to keep coming and follows you up and encourages you” --IDI, 10, female, adult, Mulago.

Some participants (n = 11, 28%) were anxious and worried to take drugs for life without stopping as they worried could cause undesirable side effects:

“For us that have used it, we experience the benefits, but also worry about the risks like kidney, failure because those are the crucial body organs! So, we worry about all that” --. IDI, 30, female, adult, Mulago.

Some participants (38%) from individual interviews suffered stress due to severe pain especially when they missed medication. They felt bad when missed sickle cell drugs because it would result in painful episodes.

“What I know is that it [hydroxyurea] prevents the painful episodes or controls it but now if you don’t swallow it, the pain returns and this time it is severe. That is what I’m scared of”. --IDI, 20, male, youth, Mulago.

Perceived drug-related side effects affected

Some participants [ 10 ] experienced drug-related side effects that affected adherence to HU, such as headache, dizziness, Painful erections at night, frequent urination, and eyes turned yellow.

“I would have headaches every single day without a break. So, there was a health worker we asked while I was admitted, and he said this drug does not cause headaches and we ignored the issue. But it was a severe headache; they first stopped me from taking it for some time… And they [doctors] told her to stop taking it for 2 weeks and that’s what she did”. --IDI, 24, female, adolescent, and caregiver, Mulago.

Some participants were anxious and worried about taking drugs for life without stopping as they worried could cause undesirable side effects:

“For us that have used it, we experience the benefits, but also worry about the risks like kidney, failure because those are the crucial body organs! So, we worry about all that”. --. IDI, 30, female, adult, Mulago.

Facility-related barriers

Long queues.

Long queues that led to poor quality of care were also reported in the hospital. Some participants were concerned about doctors who left without attending to them, yet they were in severe pain.

“ Anha! Sometimes you go and they tell you, “The time is up; the doctor is leaving, the patients’ queue was long”, sometimes you go and there is no medicine”. -- IDI, 5, female, adult, Mulago.

Some participants said there was no counseling support at the health facility regarding sickle cell at the health facility:

“Uh, they [doctors] did not support me when I missed my appointment. When I came, I was registered and given treatment. They did not do anything else or give me any form of counseling”. --IDI, 9, male, adult, Mulago .

Drug stock-outs

Drug stock-outs were mainly reported by adults. lack of sickle cell medication and other drugs in public health facilities leads patients to run out of drugs. They were told to buy the prescribed drugs from other private pharmacies to resolve issues of drug stock-outs, yet they could not afford them.

“About a month. Initially, they would give us three or six sachets of medicine. They can give you medicine for a two months or three months dose. Then, I buy the rest in the pharmacy. The challenge is some pharmacies do not have it in stock”. -- IDI, 10, female, adult, Mulago.

Some participants reported a lack of free medication in public hospitals.

“…Because even if you find someone and say, “Please help me with shs. 30,000 to buy medicine” they tell you, “Go to Mulago, medicine is there free of charge!” But they don’t know the problem is you will get there and fail to get it”. -- IDI, 5, female, adult, Mulago.

Poor communication with health providers

One participant said they did not report drug-related side effects they experienced to healthcare workers due to forgetfulness.

“I forgot to tell the health workers about the side effects I suffered. Sometimes I simply forget all about it and ignore it and say, “As long as it [side effect] is over, I continue swallowing…Now these health workers initiated me into that medicine and told me to swallow it. I would never skip a dose. They told me to swallow it from Monday to Friday, then I take a different dose for the weekend, and then it is the same for the following week”. -- IDI, 19, Male, Youth, Mulago.

Community-based barriers

Some participants reported that rumors, myths, and misconceptions were the major concerns about sickle cell in the community.

“Most times what scares them, they say, “Once you start taking the drug and then stop you die”, it scares them as well—okay, the rumors are so many” -- IDI, 11, Male, youth, Mulago.

Some participants said there was limited access to sickle cell medication in their nearby community health facilities:

“One time my leg was in severe pain; I had not yet seen the doctor. So, if the health facility was nearby—at that time I would go to Nakaseke, and they work on me. But now, there are no health workers who handle sickle cell cases in Namuwogga”. -- IDI, 27, female, adult Mulago.

Family disagreements or conflict arises from lack of financial provision by man for woman to take child to hospital:

“Sometimes we get challenges, and it affects the family. We even get disagreements between the mother and father; sometimes you are supposed to take the child and he says, “I have no money! If you can go, then go. If you are unable to go, you will go some other time” yet the appointment date is due. So, those are some of the challenges we experience” -- IDI, 26, female, caregiver Mulago.

Facilitators for the use of HU

Facilitators reported by participants were mainly at the Individual and facility level as displayed in Table 7 .

Individual level

Positive perception of HU among adolescents and adults facilitated its utilization. Hydroxyurea use was described as effective pain relief, symptom control, and good and helpful treatment among most of the qualitative participants (n = 28, 70%). This was because it mainly relieved and prevented painful sickle cell episodes, stroke, and malaria. One participant said she received pain relief having taken hydroxyurea, she also read via a Google search about weight gain benefits related to hydroxyurea’s use.

“I suffered severe pain before you started taking it [Hydroxyurea]. The pain was severe! It was so strong that sometimes I could faint because the pain was overwhelming…So far, it is not a bad medicine; it has helped us to decrease the pain so that it is not severe”. -- IDI, 3, female, adolescent, Kiruddu.

Patients reported that Hydroxyurea use improves quality of life as it reduces opportunistic infection and frequenting of hospitals by patients.

“The medicine can make you not go to the hospital every day because the day I began taking the medicine, I stopped going to the hospital. I stopped having infections. The medicine can protect you from getting sick in the cold. You can do anything even when you do not put on a sweater. You feel better. Even if you feel pain, it is not so much”- . - IDI, 15, adult male, Mulago.

Some participants illustrated the ability to do daily activities or tasks very well after using hydroxyurea. They said they had the energy to wash, cook, and perform house chores. Hydroxyurea uses enhanced mobility as one participant said could travel on long journeys having taken it.

“Initially, my back would hurt whenever I would walk a distance such as from this place to home which is no longer the case. I am better. I can perform my tasks very well. I wash, cook, and do everything very well”. --IDI, 9, male, adult, Mulago.

Participants said hydroxyurea use regulated the blood levels and reduced the level of the disease in the body or the blood.

“It seems when we had just gotten initiated onto hydroxyurea, the body was not yet used to it, so the blood levels were a bit unstable. Because when we initiated her onto hydroxyurea, they first checked her blood levels and all that. When we had just initiated her, her blood levels went down, and they initiated her back onto the drug around 2018 in December. And ever since that time, we have not had challenges with her blood levels, expect just eating lots of avocado to supplement”. -- IDI, 30, female, caregiver, Mulago.

Patients reported that Hydroxyurea use prevents a child from anemia, stroke, and other complications.

“Those [patients in waiting area] I have heard them say that it has worked for them; those I have heard especially while we are seated. They say it was effective for them; if the child had many pain episodes, they reduced. Or if the blood levels were reduced—even my brother; he used to have anemia and the pain was severe but when he started swallowing it, it started to reduce”. --IDI, 24, female, caregiver, Mulago.

Long duration on HU, enhanced patient confidence. Most of the participants were aware of hydroxyurea because they had experienced taking it for more than a year which enhanced their confidence. Duration on medication among most participants was between one to eleven years, few took it for less than a year.

“I started hydroxyurea this year in January; we came for a check-up after I went to school because I’m in boarding. Now usually when you take hydroxyurea—remember it is daily, every day I must— “ . --IDI, 28, female, adolescent, Mulago.

Facility level

Information shared by healthcare workers about HU enhanced its uptake. Health providers prescribed hydroxyurea and shared information about it through health education and seminars. They taught about the benefits and risks, the importance of hydroxyurea, and the need for patients to alert doctors in case they experienced unusual Side effects.

“…for us, we got to learn about the side effects from the doctors. But while we were at the seminar, they taught us that it is under the supervision of the doctors, who check frequently. But when we gather as women, those who know and those who don’t know, they say, “It burns the liver and the kidneys”, others say, “It is expensive”. But since you have some knowledge about it, you are firm and whatever you notice about it, you inform the doctor, “Doctor, I notice my fingers are turning” and they counsel you. Because even if we are taking it, as parents we are worried”. -- IDI, 30, female, adult, Mulago.

Healthcare workers performed testing to confirm the diagnosis of sickle cell before treatment initiation that enhanced treatment prescription. There was only one participant who said was started on treatment after symptom identification such as joint and leg swelling.

“I was then diagnosed with sickle cells. So, they asked them, “What signs have you noticed?” Then they said that they saw my joints and legs swelling. So, they got to understand and prescribe medication”. -- IDI, 10, female, adult, Mulago.

The availability of HU drugs enhanced its uptake. Some participants said they bought sickle cell medication from private pharmacies or clinics whenever drugs were not available at public health facilities.

“They [doctors from public facility] gave me the prescription and told me to buy it. So, I bought and took it from the private pharmacy, it was finished. So, after a while, I bought more medicine, but they told us we had to swallow it every day”. -- IDI, 5, female, adult, Mulago.

Recommendations from participants on how to alleviate barriers to SCD care

The major recommendation to patients was for patients to receive continuous advice and encouragement from healthcare workers. They particularly desired health workers to remind them about perfectly adhering to Hydroxyurea because it reduced the constant attacks and kept them healthy. They could advise them to set up reminders such as alarms for perfect adherence.

“We need to receive advice from the health workers. Sometimes, we lack the zeal to come since we do not have the hope to get completely cured but if the doctor tells you to keep coming and follows you up and encourages you” --IDI, 10, female, adult, Mulago.

Patients need to be told about the benefits of hydroxyurea, so that they may accept its early initiation and follow the doctor’s instructions.

“In order to accept the drug; we must tell them about the advantages of hydroxyurea. And I think we should also give them examples; I don’t know if you the health workers see that—personally, my child; I know that when she started taking hydroxyurea, her health condition became better. I regretted why they didn’t tell me earlier, but I feared it because I heard them say, “Once she gets initiated onto it, she takes it for life” and I would say, “Argh!” I was quite afraid of it. But I realized that in this life, many people are taking medicine daily and it helps them. [Hmmm] Maybe Musawo, the question I want to ask you today is, if the person grows up and gets to the child-bearing age, does she stop taking hydroxyurea”. -- IDI, 26, female, caretaker, Mulago.

Continuous sensitization about the benefits and risks of hydroxyurea, to create awareness.

“Other people need more teaching about the thing, and telling them, “If the child takes it, it will reduce the number of times you come here due to the child’s severe health condition” -. - IDI, 28, female, Youth, Mulago.

Counseling hydroxyurea should be done as well as counseling patients to value life.

“A way of encouraging people is to educate them about how important their health is; he shouldn’t be discouraged because he is neither the first nor last because there are many people out there who are ill, but everyone must believe in themselves so that they are healthy. So, if my parent cares, I also must care for myself to make sure I am healthy for the sake of my parent, instead of saying, “I don’t want to swallow medicine” one must sacrifice! --IDI, 18, female, adult, Mulago.

A peer-to-peer approach using experienced patients encourages patients to support each other and testify about the benefits of adhering to sickle cell treatment.

“…there is a school with children who suffer from sickle cell who are about 10. So, they asked me for advice, “Should we swallow hydroxyurea?” because I have spent 7 years. And I told them, “You swallow it, I also swallow it” I don’t discourage them because I have grown up without hydroxyurea. But I said the young ones know that it is helpful to them, so I cannot tell them about the fingernails turning black. Because I see their fingernails; they are not as black as I teach them different vocational skills in their school and they ask me, “Do you also swallow this medicine?” and I tell them I swallow it. But I do notice them. -- IDI, 27, female, adult Mulago.

Need financial support to start up a business as a source of income for medication to meet transport, food, and other needs.

“I was thinking, since she has finished Senior 6, maybe I could start up a small business for her so that she earns some money. Even if she gets shs. 2000, she saves it for clinic appointments and buying medicine” --IDI, 24, female, youth, Mulago.

Urge patients to drink plenty of water and mind their diet and clothing.

“They [patients] should be cautious of the cold weather by wearing a scarf. You should take water instead of Soda, minute maid [ soft drink] because that is not recommended. You would rather buy passion fruits and make your juice since the other drinks contain acids that are not good. I would rather drink water instead of drinking those other drinks. [Okay! ] You must wear a sweater when it is cold and desist from drinking cold water in the cold weather. You must mix it with hot water to become warm”. -- IDI, 17, female, Mulago.

Health facility based

Healthcare workers should address the fears and rumors about sick cell disease and treatment.

“You should address their fears and the rumors because personally, that is what made me afraid at first” -- IDI, 4, male, adult, Mulago.

Healthcare workers should advise/encourage patients to adhere to sickle cell medication:

“You must encourage the patient just like you would say, “You have to swallow folic acid because it increases the blood in the body, if you miss, then the blood levels reduce yet these cells need blood”. So even for that medicine, he/she must swallow it—so one must swallow it daily just as one did for folic acid” –. - IDI, 22, male, adult, Mulago.

There should be free drugs availed at the health facilities:

“Another thing is medicine is expensive! So, what will encourage us to come is, we should get free medicine if it is there. But the one we used to take was easy to access; if they bring us that medicine and at least we get it, find it here, then I am certain that we won’t miss any clinic appointment. Because when you come, you expect to go back with medicine, all you must do is invest in the transport”. -- IDI, 14, female, caretaker, Mulago.

Healthcare managers should ensure a consistent and sufficient drug supply.

Doctors should do follow-ups of patients and set up reminder mechanisms to adhere to treatment and keep routine clinic visits.

“Now there is a certain lady, they gave it to her and after it got finished, she stopped there claiming, “I thought you must give it to us. It is expensive in the pharmacies, and I thought I had to get it from here. Why would I buy it?” She was like, “Who is buying the medicine? Me? It is expensive! If you are giving it to us, give it to us consistently”. Other people need more teaching about the thing, and telling them, “If the child takes it, it will reduce the number of times you come here due to the child’s severe health condition” -- IDI, 28, female, Youth, Mulago.

Healthcare facilities should plan to offer transport refunds to sickle cell patients, “Support us by giving us money for the transport fare. Sometimes we are unable to afford it”.

“Apart from the government supplying the medicine; maybe about the transport as well. If they can, they could organize for us some transport when we are bringing them here because these children—sometimes we get challenges, and it affects the family. We even get disagreements between the mother and father; sometimes you are supposed to take the child and he says, “I have no money! If you can go, then go. If you are unable to go, you will go some other time” yet the appointment date is due. So, those are some of the challenges we experience”. -- IDI, 26, female, youth, Mulago.

Health facilities should allow credit options for patients who lack funds to buy drugs.

“What I think—okay, is it possible to give the people the drugs today and they pay for it another time; you record it down. I want them [doctors] to give us patients] the medicine on credit then they pay later”. --IDI, 20, male, youth, Mulago.

Financial empowerment for women to support sickle cell children at the family level should be done. Work opportunities or Income generation activity (IGA) for caregivers or sickle cell patients should be identified.

“So, we [women] must hustle even more than men—sometimes we come and there is no medicine completely! …for our children, we should be assisted in that regard, train us in income generation activities to support our children’’ -.

-- IDI, 30, female, adult, Mulago.

Community-based

Extension of sickle cell health services to the communities and local districts should be done to resolve the issue of transport.

“We need health facilities in every district because sickle cell patients are quite a number. In my village I was the only one and the whole world knew that I had the ‘virus’ as they used to call it. [Hmmm] and it hindered the boy who almost married me; they told him, “Don’t bother! That one is going to die”. But now… we need those health facilities”. -- IDI, 27, female, adult Mulago. “…they could put up health facilities in communities with health workers who handle sickle cells because you leave the place in severe pain—one time my leg was in severe pain; I had not yet seen the doctor. So, if the health facility was nearby—at that time I would go to Nakaseke, and they work on me. But now, there are no health workers who handle sickle cell cases in Namuwogga” -. -IDI, 27, female, adult Mulago.

Sensitization of patients and community people about Hydroxyurea should be done.

“Patients should be intensively sensitized about it [hydroxyurea] so that they can understand it very well. They should sensitize them so that they understand very well how effective it is”. -- IDI, 32, female, adult, Mulago.

Government should reduce the price of sickle cell medicine to enhance access for all patients.

“If it is possible—because most times the drugs are not in stock here, so they should reduce on the price or cost of the medicine…reduce the cost of that medicine. Some people cannot even start taking it; they live far away, from where they get the medicine, yet it is also expensive. So, it would hinder him or her from accessing it”. -- IDI, 11, Male, youth, Mulago.

The government should put up sickle cell health facilities in rural areas:

“Government should supply the medicine to the health facilities in the rural areas. Supply the medicine for sickle cell disease because even in the government health facilities; if you want medicine, they tell you it is out of stock because I have ever gone there when my drugs were over”. -- IDI, 13, female, youth, Mulago.

The government could support patients by providing more drugs in the health facility or in our clinic here:

“Government should supply the medicine to the health facilities in the rural areas. Supply the medicine for sickle cell disease because even in the government health facilities; if you want medicine, they tell you it is out of stock because I have ever gone there when my drugs were over” -- IDI, 13, female, youth, Mulago.

There is a need for a collaborative partnership with international or non-governmental organizations to support sickle cell patients:

Now, the government; because I have ever been NTV, talking about this issue. Just like they support our friends with HIV, they should also find international organizations to support us as well. Because HIV is serious, these patients are difficult! At least they could get for us only the capsules. -- IDI, 24, female, youth, Mulago.

The overall prevalence of HU use among participants who qualify for its use was high at 78%. This is the first study in Uganda to document the prevalence of HU use among patients with SCD. A literature search didn’t yield any studies documenting the prevalence of HU use among eligible patients. A Nigerian study that assessed Hydroxyurea utilization as a lesson in Public Health found that 65% of patients assessed were eligible for HU use and zero were using it, 5% of patients had been informed of or were aware of hydroxyurea as a treatment option for sickle cell disease [ 12 ]. In our study, though 88.2% of patients knew HU as treatment for SCD.

The high prevalence use of HU found in our study is unlike what other studies found in Africa, this is not uncommon given the high prevalence of SCD in these regions of the world. The high prevalence of use is explained by policies that encourage treatment of SCD e.g., HU is listed on the essential medicine list informed by the high prevalence of SCD hence it is procured and made available up to national referral hospitals. Patients are reviewed by healthcare workers in national referral hospitals who are experts in their field, and such are up to date with the latest management protocols for SCD, this is a key driver in the high prescription rate of HU.

In this study, patient-related barriers to HU use included financial constraints, poor adherence to sickle cell medication, missed routine clinic visits or appointments, psychosocial and emotional challenges, poor communication with health providers, and drug-related side effects (headaches, dizziness, frequent urination and yellowing of eyes).

To the best of our knowledge, this is the first study to document patient-related barriers to HU use among patients with SCD in Uganda. These barriers are like those reported by a cross-sectional survey done in Nigeria. Among patients and caregivers, barriers included lack of knowledge; perceived side effects; cost; religious beliefs of disease causation; and lack of pediatric formulation [ 13 ]. Another study done in Chicago, USA, looked at barriers to hydroxyurea adherence and health-related quality of life in adolescents and young adults with sickle cell disease, they found participants reported negative beliefs/motivational barriers (32%), recall barriers/forgetfulness (44%), and access barriers/paying for hydroxyurea and/or getting refills on time (32%) [ 14 ]. Another study looked at barriers to the use of hydroxyurea in the management of sickle cell disease in Nigeria, reported side effects profiles as the commonest barrier, reported concern for infertility (52.0%), and safety profile of HU in pregnancy and lactation (48.2%) [ 15 ]. A U.S. regional collaborative report on barriers to hydroxyurea use from the perspectives of providers, individuals with sickle cell disease, and families found providers and patient/caregiver reports about hydroxyurea use were inconsistent with one another; adults 26 years and older were least likely to be on hydroxyurea; and the likelihood of being on hydroxyurea decreased with one or more barriers, they also found that, even for patients on hydroxyurea, challenges to taking the medicine at the right time and forgetting were crucial unintentional barriers to adherence. Intentional barriers such as worry about side effects and “tried and it did not work” were important barriers for young adults and adults [ 16 ].

These barriers are not uncommon or unique since SCD is a chronic disease that requires daily medication. Similar challenges are experienced by other patients with chronic conditions [ 17 ]. Patients are bound to get treatment fatigued leading to poor adherence and missed appointments, get depressed, and sometimes suicidal. SCD is prevalent in the black population most of whom are residing in resource-limited settings like sub-Saharan Africa where finances are a major factor in accessing health care. Even in the US, SCD is prevalent among the black population [ 14 ] and most of these populations experience socioeconomic inequalities in developed countries.

These challenges are correlated in that financial constraints coupled with treatment fatigue led to poor adherence to treatment missed appointments, and psychosocial and emotional intrigue.

Other barriers reported were categorized as facility and these included drug stockouts, poor quality of care (referred as few health personnel to attend to them, and lack of counseling services). Community barriers included knowledge gaps and poor access to sickle cell medication in nearby health centers.

These barriers have been reported by other studies, in Nigeria, among clinicians, barriers included limited knowledge of the drug, as well as low self-efficacy to prescribe among physicians and to counsel among nurses; perceived side effects; perceived patient preference for traditional medicine; cost for patient and expense of accompanying laboratory monitoring; and limited availability of the drug and equipment for laboratory monitoring [ 18 ]. Another study in Nigeria reported barriers to hydroxyurea utilization identified by practitioners included safety and toxicity profile (100%), patient compliance (100%), effective follow-up (100%), drug availability (100%), affordability (100%) and specifically concern for reactivation of latent tuberculosis (50%) and carcinogenesis (100%) and teratogenicity (100%) [ 12 ].

In Africa, drug stockouts are a commonality, it is especially more pronounced if the medicine is used for chronic care like HU for SCD as opposed to an acute illness. Government programs support access to life-saving medications for human immunodeficiency virus (HIV), Tuberculosis (TB), and malaria; however, this is not the case for SCD. Advocacy efforts to sustain the continued availability of HU in the SCD treatment program are necessary.

Suggested recommendations by participants included; continuous advice and encouragement from health care workers, continuous sensitization about the benefits and risks of hydroxyurea to create awareness, peer to peer approach using experienced patients to support each other, the need for financial support to start up a business as a source of income for medication to meet transport, food, and other needs, self-motivation and self-love is needed among patients and urge patients to drink plenty of water and mind their diet and clothing.

These recommendations have been suggested by other studies i.e., prospective evaluation of patient’s perceptions of SCD and hydroxyurea in relation to adherence, HRQOL domains, and clinical outcomes is warranted [ 11 ].

Training of sickle cell care providers to attain and maintain competence in the use of hydroxyurea for the treatment of SCD was recommended by the researchers of the study on the level of utilization and provider-related barriers to hydroxyurea use in the treatment of SCD in Jos, Nigeria [ 19 ]. Researchers from an Irish study on the Irish SCD population reported that the smartphone app was expressed by the majority, with daily medication reminders being the most popular feature [ 11 ].

The suggested recommendations by participants are like interventions already in play in other public health programs such as comprehensive HIV treatment and care programs [ 20 ]. Such programs include social economic empowerment activities that equip them with skills for independent income generating for the sustenance of basic care. This allows patients to afford complementary medication, and nutrition and facilitates adherence to clinic appointments [ 21 ]. Such can be adapted into the SCD management program to offset challenges related to finances. With financial empowerment, all the other correlated challenges will be lessened.

Patients recognize the importance of medical information in advancing compliance with treatment. Programs geared towards increasing healthcare knowledge on novel SCD treatments like HU should be promoted. This will trickle down to more quality medication counseling provided to patients which will then lead to medication compliance. Expert patients could be trained to be peer influencers, by equipping them with information, educational, and communication material necessary to empower fellow patients psychosocially. This strategy has been successfully implemented in other public health challenges e.g., HIV and TB [ 22 ].

Other recommendations were health facility-based and these included; Healthcare workers should advise and encourage patients to adhere to sickle cell medication, There should be free drugs availed at the health facilities, Health managers should ensure consistent and sufficient drug supply, Health care workers should create awareness to patients about benefits of sickle cell treatment, Health care workers should offer continuous advice, health education to patients, Health care facilitates should plan to offer transport refund to sickle cell patients, Health facilities should allow credit options for patients who lack funds to buy drugs.

Community-based recommendations included the extension of sickle cell health services to the communities and local districts should be done to resolve the issue of transport, and Sensitization of patients and community people about Hydroxyurea.

Task shifting in terms of personnel and medication is necessary for grassroots accessibility. Such models have been implemented to improve life-saving therapy like ART for HIV-infected patients and disseminated drug delivery models [ 23 ].

National-based recommendations included the government reducing the price of sickle cell medicine to enhance access for all patients, the Government putting up sickle cell health facilities in rural areas, and there is need for a collaborative partnership with international or non-governmental organizations to support sickle cell patients.

Study limitations

This study was carried out at national referral hospitals which have a better supply of medicines and health care experts in the management of SCD, this created selective bias because the quality of care is not generalizable to other health centers in the country. Future research directions should include national surveys to understand the magnitude of the barriers to better government planning in the allocation of resources.

Because of the Cross-sectional nature, of the quantitative section, we were not able to determine causation but could only determine the association between HU use and patient-related barriers to HU use.

Study strengths

The study was conducted at two national referral hospitals that are in the central region of Uganda. This region has one of the highest prevalence of SCD The central region of Uganda is metropolitan with individuals coming in from different parts of Uganda so the SCD population may be representative. The findings of this study are therefore representative of the sickle cell population in Kampala which is the capital city of Uganda.

This is a mixed-method study, so the qualitative aspects of the study helped to explain the results of the quantitative findings. For example, in this study, we now know that lack of affordability is the reason why most patients have never been on HU even if it is indicated or stop using it when they need it.

Data availability

The datasets used and/or analyzed during the current study are available at https://github.com/PNamaganda/Sickle-cell-Data-in-Uganda. Deidentified data and analyzed data for this manuscript are available from the corresponding author upon request.

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Acknowledgements

We acknowledge the patients of Mulago Hospital SCD clinic and Kiruddu Hospital who gave us consent to obtain this information.

This study was funded with funds from Novartis Pharmaceuticals. The funding project had no role in the design of the study and collection, analysis, and interpretation of data and no role in writing the manuscript.

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Priscilla Namaganda

Infectious Disease Institute, Makerere University, Kampala, Uganda

Patience Nantume, Adelliine Twimukye & Christine Sekaggya Wiltshire

Uganda Cancer Institute, Kampala, Uganda

Kelvin Roland Mubiru

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PN– conception, design of work, acquisition, analysis, interpretation of data, drafted and substantively revised the manuscript, PN– data collection, data entry, data cleaning KM – Quantitative data analysis. AT– Qualitative data analysis, CS- design of work, acquisition, analysis, interpretation of data, drafted and substantively revised the manuscript. All authors read and approved the final manuscript.

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Correspondence to Priscilla Namaganda .

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Ethics approval and consent to participate.

Written informed consent/ assent was obtained from all participants or their parent/guardian or legally authorized representative to participate in the study. Ethical approval was obtained from the Infectious Disease Institute Research Ethic Committee, IDIREC REF 037/2021. All methods and procedures were carried out in accordance with relevant guidelines and regulations.

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All data collection methods and analysis were carried out in accordance with relevant Good clinical care practice (GCP) guidelines and regulations.

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Namaganda, P., Nantume, P., Mubiru, K.R. et al. Understanding patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, Uganda, a qualitative study. BMC Health Serv Res 24 , 666 (2024). https://doi.org/10.1186/s12913-024-11125-6

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qualitative research using secondary data

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Qualitative Secondary Research
This practical book will guide you through finding, managing and analysing qualitative secondary data in an error-free way. Perfect for those doing dissertations and research projects, it provides an accessible introduction to the theory of secondary research and sets out the advantages and limitations of using this kind of research.
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the downfalls of secondary data analysis, particularly in the setting of forced migration research when using online, publicly accessible data. Step 1. Formulation of Research Questions. Setting a research aim is important regardless of whether the data is from a primary or secondary source (Taylor & Ussher, 2001).
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Background In 2016, Uganda added Hydroxyurea (HU) to the list of essential drugs to treat sickle cell disease SCD. However, Hydroxyurea utilization has been low for several countries in sub-Saharan Africa. This study examined patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, in Uganda. Methods To understand ...

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Introduction

Sources and Usage of Qualitative Research Data

Types of Qualitative Secondary Analysis

Supra Analysis

Supplementary Analysis

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Assorted Analysis

Secondary Study 1: Young Adults With Chronic Illness Project (Using Archived Data)

Secondary Study 2: Dementia Project (Based on Informal Data Sharing)

Secondary Study 3: Hospital Discharge Project (Using Self-Collected Data)

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Epistemological Issues

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What is secondary research?

How to conduct secondary research

1. Identify and define the research topic

2. Find research and existing data sources

3. Begin searching and collecting the existing data

4. Combine the data and compare the results

5. Analyze your data and explore further

Primary vs secondary research

Sources of Secondary Research

Internal data

External data

Three examples of secondary research methods in action

1. Collecting factual information from the internet on a specific topic or market

2. Finding out the views of your target audience on a particular topic

3. When you want to know the latest thinking on a topic

Advantages of secondary research

Disadvantages of secondary research

When do we conduct secondary research?

Questions to ask before conducting secondary research

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Understanding patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, Uganda, a qualitative study

Study design

Study setting

Sample size estimation

Study variables

Dependent variables

Procedures for data collection and instruments

Data quality control

Data management and analysis

Characteristics of adults and adolescents

Eligibility for HU use

Patient-related barriers to HU use

Indications for initiating HU use

Individual barriers

Inadequate knowledge

Persistent pain affected the use of HU

Poor adherence to HU

Psychosocial, and emotional challenges

Perceived drug-related side effects affected

Facility-related barriers

Drug stock-outs

Poor communication with health providers

Community-based barriers

Facilitators for the use of HU

Individual level

Facility level

Health facility based

Community-based

Study limitations