qualitative research on diabetes

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. The growing emphasis on patient‐centredness has created greater opportunity for qualitative research on psychosocial issues in diabetes. These exclusions eliminated 57 articles that discussed multiple diseases (of which diabetes was one), dealt with other forms of diabetes (including eight on gestational diabetes), or assessed respondents other than those with diabetes (including 20 assessing caregivers and 21 assessing healthcare providers). The constant comparative method of data … And sometimes even punish you for wasting time… So I’m scared to speak to a doctor. [S68], I only think whatever happens is God’s will. Inductive thematic analysis was conducted using a constructivist-grounded theory approach. stream %PDF-1.5 Both positive and negative aspects of lived experience were reported, although the former was less common. Perhaps the most significant limitation is a function of the search exclusions. 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. This approach is not only truer to the spirit of qualitative methods (letting respondents describe their lived experiences in their own words), it also allows researchers to re‐analyse the data rather than being limited to the purpose of the original researcher, a potential source of bias. We have designed an outpatient program to facilitate diagnosis of diabetic neuropathy. 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. 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. how representative the data elements presented in the analysis are of the corpus of data contained within the coding scheme. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. ]�H>FJ���@��3P�e����r�w�RN�K�Y_yZ��_-�Z| z��j��v�w�:��HG5;�Yb�T�����P�:��c�����'���]� jQ��g��I���6���#*�ӯh So I felt more restricted and like someone was watching me. (Religious) I seldom wake up at night before, but now I do Salat Tahajud every night. Many found it hard to accept the diagnosis because 'you’re not as healthy as you thought you were' [S62]. It employed a qualitative research design, including both qualitative and quantitative data collection techniques to provide robust and trustworthy findings. These themes explore the pump’s impact on diabetes self-management, altered self-identity, perceptions by others and the emotional toll. Waleed M. Sweileh. Concurrently, there have been substantial advances in the development of best practices for qualitative methodology. Setting and participants Interview sessions were conducted at diabetes clinic—Penang general hospital (2016–2017). We found that negative experiences receive more attention than positive experiences. assistance with diabetes management, driving to appointments). They don’t feel the same about me no more. /����R� t�R����ʹ��6�j�lzj�>�B�p[��^f�TAK�;G �E�c.����d��aB[��,a4�/�Gt�I)��/K�����s�ԭ ����� Data extraction assessed several study characteristics: type of diabetes (type 1, type 2, both, unstated); life stage (youth, young adults, adults without age distinction, and older adults, as defined by the authors); method (individual interviews, group interviews, both individual and group interviews, open‐ended questionnaires, and other, including observational and secondary data); number of times respondents were interviewed (single, multiple); mixed methods (integration of qualitative and quantitative analyses); number of respondents; country of respondents; study selection criteria (e.g. Participants in the study saw an A1C reduction of nearly 2%. Primary Health Care: Open Access, 7 (3), 273-1-273-2. We describe a ‘Next‐Generation' mixed‐method approach to reporting qualitative data that combines the advantages of traditional qualitative analysis (assessing depth of meaning from participants themselves) with those of descriptive analysis (assessing breadth and representativeness). In health care research, particularly diabetes research, qualitative methods help clinicians answer ques-tions that quantitative research may not be able to answer, such as exploring patients’ motivations, perceptions, and expectations [1]. The number of articles represented by a code/theme ranged from 8/31 to 57/71; the number of occurrences ranged from 11/85 to 232/685. And then my brother already lost three toes … it scared the shit out of me … it scared me to death. 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. This paper systematically reviews recurrent themes within extant qualitative research and suggests avenues for future research. This may have been attributable to the DAWN2 data elicitation including respondent 'successes' as a possible topic. 1,2 In this new paradigm, both qualitative and quantitative data are collected within a single research agenda. I went to my GP and they did the 24‐hour glucose tolerance test. Like sometimes I’ll skip out on checking my blood sugar. Qualitative study that followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. While qualitative researchers may interpret/summarize participants’ narratives, readers are given direct access to participants’ lived experiences. In order to begin analysis on the method, we must first understand the meaning of meta-ethnography. Studies have reported that nurses, compared to other healthcare professionals, are more likely to promote preventive healthcare seeking behaviors. ��( JN�F;� That’s been said to me sort of thing. Respondents felt that friends/family could not 'walk in their shoes' [S70] and therefore could not 'tell me what I can and cannot eat' [S73]: 'My family members, they know I have diabetes so they always yell at me. You are going and waiting for something to happen. Sometimes I try to forget about it completely and not do it [S5]. [S54]. A n estimated 79 million American adults are at risk for developing type 2 diabetes, based on a condition referred to as prediabetes.1 Although there is currently no cure for type 2 diabetes, studies have definitively shown that the progression from prediabetes to diabetes can be delayed or prevented through lifestyle modifications and pharmacological treatment.2–4 Unfortunately, the vast majority of … Thus, the quotations reported in the reviewed articles were approximately four times more likely to deal with these themes than would be expected from a less targeted sample of quotations. Our search strategy was not exhaustive; we could have searched additional databases and used more search terms 23. [S26]. In this paper we develop and apply an innovative mixed‐method approach for synthesizing qualitative data by conducting secondary analysis of primary qualitative data from published articles. Article PubReader PDF–1.6M Citation. [S22], Usually I would go to the nearby temple to worship … It would not feel good staying at home, depressed, in a bad mood. As qualitative research involves immersion in the research process, it is recognised that completely avoiding personal bias is difficult. Qualitative research in diabetes has increased dramatically over the last 25 years and has enhanced understanding of the lived experience of people with diabetes. ‘Quit eating so much’ [S67]. A two-arm parallel-group randomized controlled trial with the blinded outcome assessors … That’s what I found very frustrating. Qualitative research in diabetes has increased dramatically over the last 25 years and has … Special issue to commemorate the 25th Anniversary of the Psychosocial Aspects of Diabetes Study Group. endobj [S70], What do you want to be doing in five years? 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?' Diabetes is a major public health concern and the lack of awareness of target blood glucose and blood pressure further complicates the problem. Interviews were audiotaped and transcribed verbatim. sociology), or even dominant (e.g. Articles were evenly divided between type 1 and type 2 diabetes, although most articles examined adults (Table 2). RESEARCH DESIGN AND METHODS Patients are initially administered a brief questionnaire and screening examination, designated the Michigan Neuropathy Screening Instrument (MNSI). Why should I let others know about it?' People with diabetes receive support from others who share the same perspective on diabetes. This research includes trying to find a cure for diabetes, improving diabetes medication and diagnostics, and making the day to day life of people with diabetes easier to […] Because there were colleagues who sometimes watched me or so … I don’t owe any explanations [S12]. Due to length limitations, results of statistical meta‐analysis are not reported here. Only three [S1,S3,S37] of the 73 non‐DAWN2 articles shared all three elements of the Next‐Generation approach: (1) published coding scheme; (2) measure of inter‐rater reliability (e.g. Summarize how conclusions from qualitative research relate to diabetes mellitus and its complications. Some findings are well established and there is little benefit to repeating these studies. I don’t rely on my mum and dad … with my readings and injections and stuff like that. This is especially relevant for diabetes because most diabetes care is self‐care, not administered by healthcare providers. Discrimination or stigma at home or school where people with diabetes are treated unfairly or made to feel different. Self-management of diabetes is challenging, especially for adolescents who face multiple changes, including closer peer relationships. ethnicity, gender, diabetes‐related characteristics). IRB approval not needed for this type of systematic review. Negative experiences (themes 1 and 2) were a higher percentage of coded quotations (73% vs 60%) and positive experiences (themes 3 and 4) a lower percentage of coded quotations (27% vs 40%) in the smaller studies than in the DAWN2 study. A Quantitative Research on Self-management of Type 2 Diabetes. Diabetes and hypertension constitute a significant and growing burden of disease in South Africa. Over the last quarter century, methods of synthesizing quantitative studies have made rapid and dramatic advances through the development of secondary analysis techniques; in meta‐analysis, data are pooled from primary analyses and statistical re‐analysis is performed to generate conclusions that are stronger than the original primary analyses 18, 19. We also provide recommendations for how qualitative study methodology can be improved by implementing the Next‐Generation approach. You’re basically normal, just a little extra step you have to do to eat and stuff [S24]. That’s better for me than coping with the fact that I have hypos, I suppose … I think when I’m in hypos I can deal with the world … It’s because, when you’re going into a hypo, nothing is real. Diabetic neuropathy is confirmed in patients with a positive assessment by a quantitative neurological … 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]. <> This qualitative study aimed to describe older adults' values and preferences for type 2 diabetes care. He doesn’t know that I have this disease. We developed an innovative Next‐Generation mixed‐method approach to qualitative secondary analysis and used it to review this literature, derived from a systematic search of PubMed. It entailed losing 50% of the income and changing the job. Diabetes becomes part of a lifestyle, normalized or accepted as the way things are now. The analysis was based on more than 2000 quotations from people with diabetes contained in the articles reviewed. 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). We were able to code 1244 of the 2050 quotations (61%) into our themes (Table 3). Percentages may not sum to 100 due to rounding. [S39], So my brother, my sister, my daddy, they all have diabetes too. 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 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. You just need that mini‐vacation. Read on for updates on some of the biggest advances and findings in diabetes today. You cannot eat sugar! Upon diagnosis of type 2 diabetes, friends and family sympathized with the respondent and normalized diabetes because 'this happens' and 'is common' [S22]. Lifestyles or patterns of behaviour that embody negative emotions, Being disconnected from diabetes, related to depression and distress. 1. It definitely feels like a team because everyone is involved and you talk to them as though they’re, you’re on equal terms in the sense that you are all just trying to make you better [S2]. Ansari, R. M., Harris, M., Zwar, N. & Hosseinzadeh, H. (2017). Minimizing or downplaying diabetes to mean that 'it’s not that bad', Concealing is a reaction to guilt or shame associated with hiding parts of diabetes that are personally embarrassing to self. A. [S1], I realized that I would be the one who made the decisions about what is best for me. 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]. A number of respondents spoke about the need to hide their injections from the public to escape embarrassment or rejection, that there was 'no place for insulin injections' [S73] in private, especially at the workplace or in restaurants except to 'go to the washroom' [S16]. A formal coding scheme was developed and systematically applied to 2050 respondent quotations contained in the 74 selected articles; inter‐rater agreement was high (κ = 0.90). The University of Tennessee, Knoxville's institutional review board approved the study before data collection began. It feels very drastic in my mind compared to what’s happening and so I … consume as much as I can in order to avoid that [S58]. Best practices of qualitative methodology were often not utilized. The new codes overlapped substantially with the codes contained in the four main DAWN2 themes, and we developed an integrated set of codes. But one time a month we just splurge and we feel so much happier. Funding, especially government funding, for qualitative research was limited, and there were few journals devoted to publishing qualitative work; thus, the number of qualitative research articles published in any given field was likely to be modest at best. 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. Next‐Generation qualitative analysis may be used for transparency in future explorations, descriptions and analyses of psychosocial topics that are poorly understood. They say, you can’t have that … it changed the other person. The study targeted patients with type 2 diabetes and the PCPs who treat them. Qualitative methods generally were judged by reference to quantitative methods and were thought to be ‘non‐scientific’. �@��%D!� .D���A�i�?-q3��ˉG�J7w���w��29�g 2017 National Standards for Diabetes Self-Management Education and Support country, type of diabetes, life stage) to test for statistically significant relationships 18, 19. Quotations were subjected to conventional qualitative analysis and reporting. Friends and family with diabetes were able to relate 'on common ground' through a 'buddy system' [S8], going through 'changes together … so we could work together on that and check up on each other' [S54]. Complications of diabetes include eye, kidney, limbs, sexual dysfunction, death. Family and friends provide positive emotional support (e.g. [S13], In the beginning, I used to feel psychological pressure but not now. I do that because I think the most effective drug is prayer [S11]. The primary DAWN2 qualitative studies 20-22 illustrate this approach. Our mixed‐method technique requires the use of a rigorous approach that we call ‘Next‐Generation' qualitative analysis, and consists of three elements: (1) an explicit coding scheme; (2) systematic application of that scheme to the qualitative data; and (3) tabulation of the frequencies for each code. [S29], When I was 45 they diagnosed diabetes … I couldn’t work as a train driver anymore. The aim of this study was to investigate the effectiveness of a nurse-led diabetes self-management education on glycosylated hemoglobin. I think that’s the main thing I worry about [S29]. A quantitative research on self-management of type 2 diabetes in middle-aged population of rural area of Pakistan Journal Article Download full-text (Open Access) Overview; Background; Identity; Additional Document Info; View All; Overview. (Conceal) I am happily engaged. type of data collection) or population (e.g. Select item 4263204 7. the frequency or percent of each code within each article), using the resulting data in combination with study characteristics such as methodology (e.g. (Covert) Just other peoples’ perceptions that diabetes is what lazy people get. We are using the narratives of individuals with diabetes, their families, or healthcare providers in their own words to guide our coding structure. 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]). 3 0 obj There were also logistical barriers to publishing qualitative diabetes research; reporting of quantitative research lent itself to shorter publications in which the main findings could be reported in table form to not infringe on word limits, while reporting of qualitative findings required extensive text quotations that reduced the words available for discussion of findings. <> and/or M.P.) In recent years, great emphasis has been placed on the role of nonpharmacological self-management in the care of patients with diabetes. Qualitative research on self-management for people with Type 2 Diabetes Mellitus (T2DM) has typically reported one-off retrospective accounts of individuals’ strategies. Reliance on a higher power was reported as a coping strategy by those who were religious: The fourth theme described emotional and psychosocial support, rather than practical support (which was not coded under our themes). Background: Qualitative research on self-management for people with Type 2 Diabetes Mellitus (T2DM) has typically reported one-off retrospective accounts of individuals’ strategies. Results: Twenty participants, aged 36-67 years, were interviewed. [S4], I thought diabetes was only an adult’s disease and not a child’s disease! The combined results from 73 small‐scale studies paralleled those for the single large‐scale study. A Quantitative Research on Self-management of Type 2 Diabetes Abstract The self-management of type diabetes is an essential part of life for the patients with diabetes to have a better and a healthy lifestyle. 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 … You don’t be feeling it all the time like you used to … with my family and my woman. In fields identifying themselves as more ‘scientific’ (e.g. The aim of this research was to identify the ways in which self-management strategies are perceived by people with T2DM as being either supportive or 12,13 Qualitative research facilitated in-depth examination of knowledge and skills as well as perceived and … If you do not receive an email within 10 minutes, your email address may not be registered, Psychologically you are afraid each time that something can happen to you. You have to balance that with … if I cheat a little bit here, then I have to lose a toe later. Both individual and social aspects of lived experience were reported, although the former was more common; there were more than three times as many quotations dealing with negative emotions/adaptations as with negative social relations, and more than three times as many quotations dealing with positive emotions/adaptations as with positive social relations. 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. METHOD USED IN THE ARTICLE The research method used in the article is a meta-ethnography approach. endobj This left us with 62 core articles from the original total of 236 (26%). 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]. It has been more than 30 years since we (H.S. Some respondents stated that diabetes is 'scary' [S19] because of the damage it can cause to the body, and many had seen diabetes from the point of view of another family member [S27] who had complications from diabetes: Many men were concerned about losing sexual function and some studies were centred on the impact of impotence and the difference in the 'bedroom game' [S7] after being diagnosed. Qualitative researchers argue that qualitative research gives you access to the nitty-gritty reality of everyday life viewed through a new analytic lens (Silverman 2005). Published qualitative psychosocial research in diabetes 25 years ago was therefore minimal. Many respondents discussed negative emotions and experiences regarding, Although negative emotions and experiences regarding, Negative emotions and experiences regarding. Respondents looked to close friends for encouragement 'to support the choices I make' [S6]. Working off-campus? The search parameters were: 'diabetes' in the title AND 'qualitative' AND ('psychological' OR 'psychosocial') in the title or abstract. The coding scheme is systematically applied to the materials to be examined (in this case, quotations from people with diabetes) and the level to which that application is systematic is assessed quantitatively by measures of inter‐rater reliability/agreement (e.g. The rate of qualitative research on the lived experience of diabetes has increased over the last 25 years. You know how they are at the clinic … they shout at you when you ask things. Quotations were aggregated at the level of the article and reported to assess both narratives and numerical counts of the data. Eighty-five per cent of articles reported studies conducted in North America or Europe, with few studies in developing countries.

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