Research in black and white

The authors consider the methodological, interpretative, and practical issues that arise when there is a difference in ethnicity between researcher and informant in qualitative research by drawing on the academic literature and their fieldwork experiences as White researchers undertaking studies with individuals of African/Caribbean and South Asian descent. Some contemporary issues raised by "researching the other" in the context of pragmatic health services research are highlighted, including access to same-ethnicity researchers, the involvement of interpreters, and the potential for ethnocentric interpretation. The authors believe that qualitative research should be judged by the plausibility of the findings and by a critical evaluation of the way in which the research was conducted and the reflexivity of the researcher.     

Self-care in mental health services: a narrative review

Self-care is an important approach to the management of long-term health conditions and in preventing ill-health by living a healthy lifestyle. The concept has been used to a limited extent in relation to mental health, but it overlaps with the related concepts of recovery, self-management and self-help. These related concepts all entail individuals having more choice and control over treatment and a greater role in recovery and maintaining their health and well-being. This paper reviews qualitative empirical research that provides information on the nature of self-care in mental health from the perspective of people experiencing mental health problems. Twenty qualitative studies were identified from a systematic search of the literature. The methods used in these studies were critically appraised and key themes across studies identified self-care behaviours and processes supporting self-care. The paper also highlights challenges to this approach in mental health and provides a conceptual framework of the relationships between self-care support, self-care behaviours and strategies, and well-being for the individual. It also highlights limitations in the current evidence base and identifies areas for future research.     

Conceptual and practical issues in qualitative research: Reflections on a life-history study

Although qualitative research is becoming increasingly popular as a means of understanding not only occupation but also a range of other human health-related phenomena, the complex conceptual underpinnings of the paradigm remain relatively unexplored in the literature. This article addresses such a perceived gap. Context specificity, emic perspectives, its iterative nature, and power relations are four distinct conceptual dimensions of qualitative research that are discussed. The article also includes reflections on conceptual dimensions and practical issues in relation to a qualitative study that adopted a life-history approach. These reflections highlight how the conceptual dimensions underpinning qualitative research guide the process in life-history research and shape the experience of life-history researchers. The practical considerations, which focus on participant qualities, effects on the researcher and the participant–researcher relationship, are particularly relevant for potential life-history researchers. The article concludes with a discussion on the value of life history as a qualitative research approach for occupational therapy and occupational science.     

Issues of representation within qualitative inquiry

Although qualitative inquiry has developed into a popularized and very useful way of conducting research within the health sciences, there has been a relatively disproportionate amount of literature devoted to "who" is represented in such inquiries. It is most often assumed that the end text should present an objective, value-free, and accurate representation of the participants and therefore exclude by all means the researcher's presence from the study. Although this might hold grounds for some inquiries, it is not necessarily the norm of a qualitative research. In this article, the author argues that the representation of the researcher in qualitative inquiries is inevitable, and the exclusion, or not, of the researcher from the text is a mere conventional agreement founded on a paradigmatic consensus. He concludes with the notion that there is a correlation between issues of representation and the researcher's stated epistemological and ontological assumptions.     

Conceptual and practical issues in qualitative research: reflections on a life-history study

Although qualitative research is becoming increasingly popular as a means of understanding not only occupation but also a range of other human health-related phenomena, the complex conceptual underpinnings of the paradigm remain relatively unexplored in the literature. This article addresses such a perceived gap. Context specificity, emic perspectives, its iterative nature, and power relations are four distinct conceptual dimensions of qualitative research that are discussed. The article also includes reflections on conceptual dimensions and practical issues in relation to a qualitative study that adopted a life history approach. These reflections highlight how the conceptual dimensions underpinning qualitative research guide the process in life-history research and shape the experience of life-history researchers. The practical considerations, which focus on participant qualities, effects on the researcher and the participant-researcher relationship, are particularly relevant for potential life-history researchers. The article concludes with a discussion on the value of life-history as a qualitative research approach for occupational therapy and occupational science.     

The impact of working with disturbing secondary data: reading suicide files in a coroner's office

The article discusses the effects on the researcher of reading disturbing secondary data (defined here as evidence gathered by someone other than the researcher). The case study is a qualitative sociological autopsy of suicide, and the secondary data--written documents and photographs--are all from case files in a British coroner's office. Following ethnographic detail about the research setting and research process, there is discussion of the diverse secondary data sources in these files, particularly in relation to the impact on the researcher. Some general observations are made about emotion in the research process and potential strategies for responding to emotion. The authors locate their responses to reading about suicides within the broader context of the social processing of death and distress, and also consider whether emotional reactions to data have any analytical purchase.     

Self-care as a response to diarrhoea in rural Bangladesh: empowered choice or enforced adoption?

The literature is growing on the subject of coping strategies. However, with the exception of some work on the promotion of oral rehydration therapy (ORT), very few studies have examined coping strategies as a response to the ongoing diarrhoeal disease burden. This is particularly relevant in the case of self-care, previously documented as the most readily implemented treatment in the developing world and an increasingly common health behaviour in rural Bangladesh. This study analysed the socioeconomic factors that influence the adoption of self-care and the role that varied asset availability plays in relation to households choosing, or being forced to implement, a coping strategy. Qualitative methods were used to collect data from three villages in Nilphamari District, North West Bangladesh, in 2004. The findings produced a detailed picture of asset availability and its influence on household use of self-care treatment practices. The strong role of aspects of social capital in building human capital was highlighted, as well as how these aspects of social capital can assist household welfare through self-care in times of diarrhoeal disease. In contrast, households exhibiting weakened social and human capital were more excluded from information on appropriate self-care treatments. Development agencies and health care policies might therefore strengthen levels of household resilience to diarrhoeal disease more cost-effectively by focusing on activities that facilitate self-care through support of social networks and education channels.     

Informing the development of services supporting self-care for long term mental health conditions: A mixed method study of community based mental health initiatives in England

ABSTRACT: BACKGROUND: Supporting self-care is being explored across health care systems internationally as an approach to improving care for long term conditions in the context of ageing populations and economic constraint. UK health policy advocates a range of approaches to supporting self-care, including the application of generic self-management type programmes across conditions. Within mental health, the scope of self-care remains poorly conceptualised and the existing evidence base for supporting self-care correspondingly disparate. This paper aims to inform the development of support for self-care in mental health by considering how generic approaches translate into the mental health context, and by indicating what is specific about supporting self-care for mental health. METHODS: A mixed method study was undertaken comprising standardised psychosocial measures, questionnaires about health service use and qualitative interviews with 120 new referrals to three contrasting community based initiatives supporting self-care for serious and enduring mental health conditions, repeated nine months later. A framework approach was taken to qualitative analysis, an exploratory statistical analysis sought to identify possible associations between a range of independent variables and self-care outcomes, and a narrative synthesis brought these analyses together. RESULTS: Participants reported improvement in self-care outcomes (e.g. empowerment; less use of Accident and Emergency services). These changes were not associated with level of engagement with self-care support. Level of engagement was associated with positive collaboration with support staff. Qualitative data described the value of different models of supporting self-care and considered challenges. Synthesis of analyses suggested that timing support for self-care, giving service users control over when and how they accessed support, quality of service user-staff relationships and decision making around medication are important issues in supporting self-care in mental health. CONCLUSIONS: Generic elements of support for self-care - e.g. peer support groups, personal planning - have value when translated into a mental health context. Support for self-care in mental health should focus on core, mental health specific qualities - issues of control, enabling staff-service user relationships and shared decision making - rather than simply the provision of standardised service components. The broad empirical basis of our research indicates the wider relevance of our findings across mental health settings.     

Co‐researching with people with learning disabilities: an experience of involvement in qualitative data analysis

Background People with learning disabilities have been included in research as co‐researchers since the 1990s. However, there is limited literature about the processes of involving people with learning disabilities in the more intellectual and analytical stages of the research process. Aims To examine the potential contribution of people with learning disabilities to data analysis in qualitative research. Methods This article is a reflection on one research experience. The two authors include one researcher with and one without learning disabilities. They each describe their experience and understanding of user involvement in analysing the data of an ethnographic study of people with learning disabilities who had cancer. The researcher with learning disabilities was given extensive vignettes and extracts from the research field notes, and was supported to extract themes, which were cross‐compared with the analysis of other members of the research team. Results The researcher with learning disabilities coped well with the emotive content of the data and with the additional support provided, he was able to extract themes that added validity to the overall analysis. His contribution complemented those of the other members of the research team. There were unexpected benefits, in particular, in terms of a more reciprocal and supportive relationship between the two researchers. Conclusion It is possible and valuable to extend involvement to data analysis, but to avoid tokenism and maintain academic rigour, there must be a clear rationale for such involvement. Extra support, time and costs must be planned for.     

Qualitative research and the problem of judgement: lessons from interviewing fellow professionals

BACKGROUND: Qualitative research methods are recognized increasingly as valuable tools for primary care research, and add an extra dimension to quantitative work. OBJECTIVE: The aim of this study was to illustrate the benefits and problems attending the dual role of clinician/qualitative researcher. METHODS: As part of two studies employing semi-structured interviews of GPs in a North-West conurbation, about the topics of consultations on chronic low back pain and drug misuse in primary care, respondents' views on their interaction with a GP researcher were explored. RESULTS: Access to the GP by the interviewing GP was easier when the GP researcher was known to the respondent. Such prior knowledge, however, may then influence the content of the data and the manner in which the GP researcher is perceived. During the interview itself, where respondents recognized the researcher as a clinician, interviews were broader in scope and provided richer and more personal accounts of attitudes and behaviour in clinical practice. The GP was also identified as an expert and judge, not just of clinical decision making but also about moral judgements made by GPs in their work. This will impact on the data obtained at interview and must be taken into consideration when the data are interpreted and analysed. CONCLUSION: Qualitative research techniques increasingly are advocated as appropriate for research on and in general practice. The professional identity of the researcher plays an important part in constructing the kind of data obtained in such studies, and this must be made apparent in reporting and discussions of such qualitative work.     

'Self-care' and its relevance to developing demand management strategies: a review of qualitative research

The promotion of self-care has been recognized as an important aspect of managing demand for health care more effectively. Self-care is increasingly being seen by policy makers as a hidden health care resource to be viewed in the context of health care provided by the formal health care sector. Quantitative studies are important for understanding the effectiveness of interventions in terms of the impact they may have on health service utilization. However, questions remain about the reasons people may or may not adopt self-care, the mechanisms for change and the way in which social context may affect the way in which people respond to self-care interventions. Qualitative research that has focused on people's self-care practices provide insights into these aspects. The qualitative studies reviewed here suggest that a number of factors need to be considered when devising health care interventions for managing demand better. These include an assessment of the meaning of the disease to the person so that self-care information can be designed in a way that fits people's prior beliefs and lifestyles. Timing and the stage in a person's illness career are also important factors to consider when designing effective self-care interventions. Social interaction and the impact of significant others may affect whether or not a self-care regime is followed, and autonomy and control are also relevant to designing acceptable self-care strategies. Incorporating these aspects of self-care as a dynamic and interactive process is important for both devising and assessing the impact of interventions aimed at the better management of demand.     

Sustaining Work Participation Across the Life Course

Introduction Many disability prevention strategies are focused on acute injuries and brief illness episodes, but there will be growing challenges for employers to manage circumstances of recurrent, chronic, or fluctuating symptoms in an aging workforce. The goal of this article is to summarize existing peer-review research in this area, compare this with employer discourse in the grey literature, and recommend future research priorities. Methods The authors participated in a year-long sponsored collaboration that ultimately led to an invited 3-day conference, “Improving Research of Employer Practices to Prevent Disability”, held October 14–16, 2015, in Hopkinton, Massachusetts, USA. The collaboration included a topical review of the scientific and industry literature, group discussion to identify key areas and challenges, drafting of initial documents, and feedback from peer researchers and a special panel of experts with employer experience. Results Cancer and mental illness were chosen as examples of chronic or recurring conditions that might challenge conventional workplace return-to-work practices. Workplace problems identified in the literature included fatigue, emotional exhaustion, poor supervisor and co-worker support, stigma, discrimination, and difficulties finding appropriate accommodations. Workplace intervention research is generally lacking, but there is preliminary support for improving workplace self-management strategies, collaborative problem-solving, and providing checklists and other tools for job accommodation, ideas echoed in the literature directed toward employers. Research might be improved by following workers from an earlier stage of developing workplace concerns. Conclusions Future research of work disability should focus on earlier identification of at-risk workers with chronic conditions, the use of more innovative and flexible accommodation strategies matched to specific functional losses, stronger integration of the workplace into on-going rehabilitation efforts, and a better understanding of stigma and other social factors at work.     

Education for Menarche

Educational programs to prepare young women for menarche potentially can affect their self-view, peer interaction, decision-making, and self-care capabilities. A review of literature on menarche and menarcheal education is presented with implications for program development. References that can assist health educators in developing appropriate content and strategies are identified.     

An innovative method to involve community health workers as partners in evaluation research

Objectives. We developed a process through which community outreach workers, whose role is not typically that of a trained researcher, could actively participate in collection of qualitative evaluation data.Methods. Outreach workers for a community-based intervention project received training in qualitative research methodology and certification in research ethics. They used a Voice over Internet Protocol phone-in system to provide narrative reports about challenges faced by women they encountered in their outreach activities as well as their own experiences as outreach workers.Results. Qualitative data contributed by outreach workers provided insights not otherwise available to the evaluation team, including details about the complex lives of underserved women at risk for poor pregnancy outcomes and the challenges and rewards of the outreach worker role.Conclusions. Lay health workers can be a valuable asset as part of a research team. Training in research ethics and methods can be tailored to their educational level and preferences, and their insights provide important information and perspectives that may not be accessible via other data collection methods. Challenges encountered in the dual roles of researcher and lay health worker can be addressed in training.Lay health workers are an increasingly important component of many community-based public health intervention efforts. Systematic literature reviews summarize evidence for the effectiveness of lay health workers in improving health access and outcomes with respect to a wide variety of health concerns, including childhood immunization, breastfeeding, infant and child mortality, and pulmonary tuberculosis.^1,2Community outreach workers are lay health workers who typically have close ties to the communities they serve and establish trusting relationships with clients and study participants. These qualities not only account for outreach workers’ effectiveness in connecting with hard-to-reach populations but also make them valuable partners in program evaluation because of the depth of their knowledge and insights into community members’ complex lives, including impediments to and facilitators of healthy living and full access to care and services.³ However, there are few examples in the literature of the community and client-focused knowledge held by outreach workers being systematically documented and integrated into research or program evaluations. We describe how one program used Internet-based technology and qualitative methods to enhance the participation of community outreach workers as community-based researchers in the evaluation of a public health intervention.     

Validation of qualitative research in the "real world"

In this article, the author takes up the debate about the usefulness of the concept of validity in qualitative research and acknowledges the critical role of the researcher as an "instrument" in the research process. Qualitative research, and the process of analysis in particular, involves continuous reflexivity and self-scrutiny. Balancing the need for creativity and rigor, the qualitative researcher can experience uncertainty, particularly in relation to small numbers. The author describes steps that she and a colleague took to ensure the validity and accuracy of the findings in a qualitative study of female sex workers. She discusses specific challenges in relation to the validity of their interpretation and describes two unexpected and serendipitous validity checks that served as affirmation.     

Making meaning: the creative component in qualitative research

Findings in qualitative research are often wondrous and exciting, expounding new knowledge and perceptions previously unknown. Qualitative research requires the researcher to ponder and reflect on the data collected so as to find the meaning within. Helping researchers learn how to perform this step is not well discussed in the qualitative literature, yet this is one of the more crucial components of this type of research. In this article, the incubation, the meaning-making phase of qualitative research, is discussed in relation to the experiences of five researchers who have used traditional processes, models, metaphors, plays, pastiche, poetry, and quilt making and design to help them make meaning.     

Knowledge transfer and exchange: review and synthesis of the literature

Knowledge transfer and exchange (KTE) is as an interactive process involving the interchange of knowledge between research users and researcher producers. Despite many strategies for KTE, it is not clear which ones should be used in which contexts. This article is a review and synthesis of the KTE literature on health care policy. The review examined and summarized KTE's current evidence base for KTE. It found that about 20 percent of the studies reported on a real-world application of a KTE strategy, and fewer had been formally evaluated. At this time there is an inadequate evidence base for doing "evidence-based" KTE for health policy decision making. Either KTE must be reconceptualized, or strategies must be evaluated more rigorously to produce a richer evidence base for future activity.