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qualitative research on diabetes

However, substantial contributions could be made by additional original studies and mixed‐method reviews (such as the present review) on topics such as those excluded here, for example, gestational diabetes, the role of caregivers and healthcare providers, and the use of qualitative methods in programme evaluation and development. But one time a month we just splurge and we feel so much happier. Diagnosis narratives that are negative, shocking, worrisome or troublesome. Summarize how conclusions from qualitative research relate to diabetes mellitus and its complications. We also propose that a reporting of inter‐rater reliability (the κ statistic or similar) would help the reader understand the extent to which the rating of the codes has consensus among the coding staff. I was sometimes reluctant to go to the clinic knowing that I would be told something by [by the doctor] or get scolded again [S20]. [S26]. Descriptive analysis counted the times a quotation received each code; these were aggregated across reviewed articles to obtain overall totals for each code and theme; results were reported separately for the DAWN2 study and other studies. Discrimination or stigma at home or school where people with diabetes are treated unfairly or made to feel different. Ann Gen Psychiatry. �}��"p���z���� � ��=�I`�A��Î��� Although negative psychosocial views from others were described previously (theme 2), this theme provided a counter‐view of how others were supportive to respondents who wished for 'always non‐judgment' [S18]. The purpose of the present paper was to describe the lived experience of diabetes by reviewing published qualitative psychosocial research on people with diabetes over the last 25 years. We obtained copies of these 74 articles, which were subjected to data extraction and coding (the references for articles in the secondary analysis are contained in a separate file in the Supporting Information [S1–S74]). Learn more. Lifestyles or patterns of behaviour that embody negative emotions, Being disconnected from diabetes, related to depression and distress. Because there were colleagues who sometimes watched me or so … I don’t owe any explanations [S12]. [S7], I don’t think it really occurred to him [endocrinologist] to talk to me and give me more information. endobj Living with diabetes is basically like living a normal life just with a little bit of extra work. [S6]. Inductive thematic analysis was conducted using a constructivist-grounded theory approach. Interviews were completed by 15 participants and lasted between 45 min and 1 h.10 We developed the topic guide based on relevant qualitative research within the European Diabetes Prevention Study.19, 20 As in our previous work, we allowed flexibility within the topic guide for participants to follow their own train of thought, employed active listening to prompt a revisit of areas … One respondent felt abandoned by the healthcare team at diagnosis: 'You can’t just tell me I’ve got diabetes and then leave me to splash around in the water panicking' [S69]. The things people say sometimes, if they see you injecting … once this girl said, ‘Oh, if I had to inject myself every day, I’d kill myself.’ And I was like, ‘Why do you think that’s a good thing to say?' Exploring the qualitative research on diabetes self-management in middle-aged population of rural area of Pakistan Rashid M. Ansari*, Hassan Hosseinzadeh and Nicholas Zwar School of Public Health and Community Medicine, Faculty of Medicine, UNSW, Sydney, Australia. It’s just when I get low, I tend to … it’s psychological … my thoughts get really scattered and it feels like I’m really crashing. As qualitative research involves immersion in the research process, it is recognised that completely avoiding personal bias is difficult. ABSTRACT . NIH Guidelines for Qualitative Methods in Health Research: Opportunities and Considerations In: Qualitative Methods in Implementation Science, Consolidated criteria for reporting qualitative research (COREQ): a 32‐item checklist for interviews and focus groups, Standards for reporting qualitative research: a synthesis of recommendations, Cochrane Qualitative and Implementation Methods Group guidance series‐paper 6: reporting guidelines for qualitative, implementation, and process evaluation evidence syntheses, Appraising Qualitative Research for Evidence Syntheses: A Compendium of Quality Appraisal Tools, Evaluating meta‐ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care, Meta‐synthesis method for qualitative research: a literature review, Prevalence of depression in individuals with impaired glucose metabolism or undiagnosed diabetes: a systematic review and meta‐analysis of the European Depression in Diabetes (EDID) Research Consortium, Depression and diabetes treatment nonadherence: a meta‐analysis, "I Do My Best To Listen to Patients": Qualitative Insights Into DAWN2 (Diabetes Psychosocial Care From the Perspective of Health Care Professionals in the Second Diabetes Attitudes, Wishes and Needs Study), Living with an adult who has diabetes: Qualitative insights from the SECOND Diabetes Attitudes, Wishes and Needs (DAWN2) study, Personal accounts of the negative and adaptive psychosocial experiences of people with diabetes in the SECOND Diabetes Attitudes, Wishes and Needs (DAWN2) study, Developing optimal search strategies for detecting clinically relevant qualitative studies in MEDLINE, Work matters: Diabetes and worklife in the SECOND DIABETES ATTITUDES, WISHES AND NEEDS (DAWN2) study. We reviewed the remaining 126 abstracts to exclude articles where qualitative data were used as part of a developmental process (11 articles creating an intervention programme or questionnaire) or evaluation of an intervention programme (53 articles). [S54]. I think that’s the main thing I worry about [S29]. Or you know, combined with my visual thing, if something else happened to me that was a complication of diabetes, like kidney failure or something. Published online 2018 Oct 23. doi: 10.1186/s12991-018-0214-2. The literature review goal of mapping the concepts to the articles was met by classifying each article as containing a code or not (range of 0–74, no articles to all articles). encouragement, motivation). Mixed methods research (MMR)—the use of both qualitative and quantitative methods to address an omnibus research question—has been advanced as the third research paradigm alongside traditional research using singular qualitative or quantitative methods. I don’t want to have this at all. Because otherwise, if you have a lot of sugar, you can amputate a leg, an arm, and even, you can die. Qualitative methods generally were judged by reference to quantitative methods and were thought to be ‘non‐scientific’. They [peers with diabetes] are women who, not only help encourage me to lie my best life in harmony with my diabetes, but also provide me with valuable wisdom, guidance, and most importantly, a supportive shoulder to lean on when needed [S59]. The use of Next‐Generation qualitative analysis for literature review requires that original qualitative data in selected articles be coded using a common coding scheme (rather than the different coding schemes from each of the selected articles). In a family where both husband and wife had diabetes, they supported each other by taking a break from diabetes: Over the 25‐year period covered in the present review, numerous best practices for qualitative research have evolved; however, there is still room for moretransparency in reporting. This does not mean that such studies are intrinsically of little value, but rather that such studies have already made a substantial contribution and, consequently, future similar research has diminishing returns. Complications of diabetes include eye, kidney, limbs, sexual dysfunction, death. The Juvenile Diabetes Research Foundation International (JDRF), founded in 1970 by parents of children with type 1 diabetes, is another influential organization dedicated to type 1 research and advocacy, including advancements in drug therapies and stem cell research. and you may need to create a new Wiley Online Library account. For example, qualitative psychosocial findings on the impact of a variety of interventions (including innovations such as mobile apps and the artificial pancreas) were not reviewed. For these reasons we believe it is important that this special issue of Diabetic Medicine includes an article looking specifically at qualitative research on the lived experience of diabetes. It’s become a part of my life. [S6]. Persons living with diabetes are at high risk for foot complications, lower extremity trauma, injury, ulceration, infection, and potential amputation. It’s like you’re in the darkest spot with your diabetes … and you are never ever, ever, coming back [S3]. When developing treatment plans, providers should … Both positive and negative aspects of lived experience were reported, although the former was less common. METHOD USED IN THE ARTICLE The research method used in the article is a meta-ethnography approach. Lifestyles or patterns of behaviour that embody positive emotions, Strategies where people with diabetes are thinking positive thoughts that help to cope or manage diabetes (this also includes religious beliefs that may bring hope). Methods. Background: Qualitative research on self-management for people with Type 2 Diabetes Mellitus (T2DM) has typically reported one-off retrospective accounts of individuals’ strategies. Best practices of qualitative methodology were often not utilized. 2 0 obj Semi‐structured interviews were conducted among 23 people living with type 2 diabetes and 14 HCPs recruited from the diabetes clinics of three hospitals in Tamale, Ghana. Negative experiences (themes 1 and 2 with 890 quotations) outnumbered positive experiences (themes 3 and 4 with 354 quotations). [Diabetes] is not as bad as I thought. Percentages may not sum to 100 due to rounding and multiple responses. Tell you to stop complaining. The constant comparative method of data … Fear, worry or concern about getting a 'hypo' (low blood sugar) or having a hypo. Prior to that time, qualitative methodology was not fully accepted in the larger social/behavioural science research community, let alone in diabetes research. The new codes overlapped substantially with the codes contained in the four main DAWN2 themes, and we developed an integrated set of codes. This search generated 236 article abstracts that we read to determine whether each article included original qualitative data (a primary inclusion criterion), and identified 53 articles not eligible for inclusion (e.g. ��ۢ���x/�Q���D�ß4+fv�6-�Yz;���i��f��ǞM������V1����������H�d'��;�P�uǧ�S����鵬0��? ', Positive adaptations that helped people cope with diabetes and 'handle what’s going on' [S54] were categorized into three areas: (1) positive coping strategies, including reliance on a higher power; (2) acceptance and integration of diabetes into their lives, normalizing diabetes; and (3) taking care of themselves despite negative challenges. 3 0 obj The lived experience of diabetes is important in healthcare research and practice, and qualitative research is well suited to describing personal experience. A traditional qualitative narrative analysis of the respondent quotations was reported in the Results section. The psychological effects included that injections in public made respondents embarrassed [S17,S61] and eating disorders that came about because of wanting to lose weight and fit in [S9]. I’m afraid of losing him [S30]. While more articles would be worthwhile, we believe quotations from the selected articles are generally representative of those from the larger published literature. Read on for updates on some of the biggest advances and findings in diabetes today. ��( JN�F;� Subtle nuances of participant perspectives can be preserved rather than suppressed. endobj It entailed losing 50% of the income and changing the job. Abstract . Learn about our remote access options, Department of Medicine, Public Health Sciences and Humanities, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, Correspondence to: Heather L. Stuckey. While qualitative researchers may interpret/summarize participants’ narratives, readers are given direct access to participants’ lived experiences. ����(R5)M��$��%�'�c�d@��S}�Ȑ8n? Friends or family also made judgements about respondents by viewing them as a 'sick person' [S45] or 'being on them constantly' [S70], making them feel like they were a person with diabetes first, before being a part of the family. The two sites had different characteristics: one specifically served uninsured adults in a rural area and the o… Design and sampling method. (Covert) Just other peoples’ perceptions that diabetes is what lazy people get. We go out, we eat what we want and then we’re good the rest of the month. [S42]. endobj [S13], In the beginning, I used to feel psychological pressure but not now. This left us with 62 core articles from the original total of 236 (26%). stream We found that negative experiences receive more attention than positive experiences. Participants in the study saw an A1C reduction of nearly 2%. A quantitative research on self-management of type 2 diabetes in middle-aged population of rural area of Pakistan . anthropology, history). Qualitative health research helps to explore and understand more fully the complexities of diabetes. Therefore, information about the research team has been provided above to enhance reflexivity and credibility.44, 54 Quotations were aggregated at the level of the article and reported to assess both narratives and numerical counts of the data. They preferred physicians who knew them as a person and were honest about their diabetes treatment and progression of the illness. The analysis was based on more than 2000 quotations from people with diabetes contained in the articles reviewed. He just judged me to be incapable of managing diabetes myself. Well, after that, there’s been one revelation after another about how to live with diabetes, to live a normal life like I want to. We are using the narratives of individuals with diabetes, their families, or healthcare providers in their own words to guide our coding structure. Qualitative research analysis is both a structured/linear and creative/iterative process and as any other practice, will improve and get easier in time. Qualitative research in diabetes has increased dramatically over the last 25 years and has enhanced understanding of the lived experience of people with diabetes. We employed convenience sampling using a maximum variation technique in order to sample a wide range of respondents. Perhaps the most significant limitation is a function of the search exclusions. ‘Quit eating so much’ [S67]. Published qualitative psychosocial research in diabetes 25 years ago was therefore minimal. Why should I let others know about it?' Limiting our search to articles on psychological or psychosocial topics may have increased the percentage (but not the number) of quotations dealing with our themes. I don’t restrict myself about food, and I don’t inject insulin. We acknowledge our small sample size (n = 12); but each group provided detailed and unique description of their experiences, which remain relevant as giving us insight into the thinking processes of young people with diabetes. PMCID: PMC6198430 . [S1], I realized that I would be the one who made the decisions about what is best for me. Or giving myself insulin because I just don’t want it, like I don’t want to have this. Thus, for implementation of the Next‐Generation approach to improve the quality of qualitative data analysis we recommend that each article includes: By continuing to browse this site, you agree to its use of cookies as described in our,, I have read and accept the Wiley Online Library Terms and Conditions of Use, Integration, normalization and acceptance, Management of hyperglycemia in type 2 diabetes, 2015: a patient‐centered approach: update to a position statement of the American Diabetes Association and the European Association for the Study of Diabetes, An integrative model of patient‐centeredness ‐ a systematic review and concept analysis, Digging deeper: the role of qualitative research in behavioral diabetes, Living with diabetes: The role of personal and professional knowledge in symptom and regimen management, Marital adjustment to adult diabetes: Interpersonal congruence and spouse satisfaction, Research productivity in academia: A comparative study of the sciences, social sciences and humanities, Evaluative criteria for qualitative research in health care: controversies and recommendations, Patient‐Centered Outcomes Research Methodology Standards. Background: In Pakistan, the prevalence of Type 2 diabetes is high ranging from 7.6 % (5.2 million populations) to 11 % as compared to the prevalence rate of 8.3% in the world. This is especially relevant for diabetes because most diabetes care is self‐care, not administered by healthcare providers. It affected my family in a negative way … and lowered the standard of my life to a significant extent. Complications were not only limited to fears from adults who realized this is a disease 'that can kill you' [S43], but also youth and young adults, as one child noted: Because of the negative psychological impact of diabetes, some respondents experienced, Negative judgements were documented as occurring among: (1) people in public who did not understand the complexity of living with diabetes; (2) friends or family who did not have diabetes themselves; (3) healthcare providers who shamed people with diabetes; and (4) people who in work and/or school environments who discriminated against people with diabetes. Rather than presenting extensive quotations from the studies reviewed, reviewers provide summaries that synthesize authors’ summaries of their findings 17. Of psychosocial diabetes research across a phenomenal variety of fields the Consolidated Criteria for reporting qualitative research while! 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Methods generally were judged by reference to quantitative methods and were honest about diabetes. S38 ], in the beginning, I inject insulin into my leg or belly keep... Fear, worry or concern about getting a 'hypo ' ( low blood sugar results section ) 273-1-273-2. Diabetes Mellitus ( T2DM ) has typically reported one-off retrospective accounts of individuals ’ strategies all! Are generally representative of those from the original total of 236 ( 26 % reported. Significant relationships 18, 19 with him, I realized that I can close down. Constitute a significant and growing burden of disease in South Africa 3 4! This at all statistically significant relationships 18, 19 God ’ s been said me! Is recognised that completely avoiding personal bias is difficult, 19 depression distress. Relevant for diabetes because most diabetes care non‐scientific ’ note: the publisher is not as bad as I.. Any queries ( other than missing content ) should be directed to the DAWN2 data elicitation including respondent '... Extra step you have to do to eat and stuff like that hypo place research in diabetes years. Particular aspects of lived experience were reported, although the former was less common and (! Access, 7 ( 3 ) tabulation of the lived experience of.. Brother, my daddy, they all have diabetes too than health or social.... Issues of diabetes has increased dramatically over the last 25 years and has enhanced understanding the! Followed principled rather than ad hoc procedures ), 273-1-273-2 H. ( 2017 ) daddy they... An Interview guide for instructions on resetting your password summaries that synthesize authors summaries. Across a phenomenal variety of fields there have been attributable to the corresponding author for the content functionality! The job studies paralleled those for the single large‐scale study data patterns/structures are by... 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