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Table 4 Summary of Qualitative Papers included in the synthesis

From: Follow-Up Support for Effective type 1 Diabetes self-management (The FUSED Model): A systematic review and meta-ethnography of the barriers, facilitators and recommendations for sustaining self-management skills after attending a structured education programme

Paper Aim Sample Data collection Data analysis Presentation of findings
Casey et al. 2011 [36] To identify key factors impacting on patients’ ability to assimilate DAFNE principles into their daily lives and how and why these may change over time. Purposive sample (n = 40) from 5 DAFNE centres. Paper presents data from semi-structured interviews carried out by two researchers over a 36 month period during 2006–2009. Participants were interviewed at three different time periods, 6–8 weeks, 6 months and 12 months post attendance at DAFNE. 2 participants were lost to follow up at the 12 month interview due to illness. Total interviews =118. Data gathered over a 36 month period from 2006 to 2009 Longitudinal analysis, involving three stages: 1. analysis of specific time points using thematic analysis and axial coding to identify categories; 2. cross sectional analysis to look for change between time points in individual cases; 3. thematic analysis of changes over time. Four themes: 1. embedded knowledge 2. continued responsive support 3. enduring motivation 4. being empowered
Murphy et al. 2011 [37] To understand the experience of participants in the DAFNE programme and identify factors that influence participants’ implementation of self-management guidelines. Same participants as paper [36]. Same dataset as paper [36], but only presents data collected within the first 24 months. Constant comparative analysis undertaken concurrently with data collection. Open coding, axial coding and development of a core category. Developed a core category of “being in control” which included 5 factors - knowledge, motivation, support, relationship shift and empowerment.
Casey et al. 2016 [38] To explain the factors affecting glycaemic control, measured by HbA1c, following completion of a DAFNE course. Same participants as paper [36, 37], but 6 participants were lost to follow up (1 man, 5 women) giving a total of n = 34. Same dataset as paper [36] but with the addition of quantitative measures - HAD, DSQOLS,PAID, clinical data on HbA1c As for paper [36] but findings were merged with the quantitative data set to show how participants’ perspectives on their self-management (the themes from paper [36]) linked to their quantitative outcomes. Findings presented according to three groups of participants: 1. out of control (n = 17, above 8.0% at baseline and at 12 months) 2. Out of control but getting control (n = 6, above 8.0% at baseline, but reduced to less 12 m) 3. In control and remained in control (n = 5, started below 8.0% and remained under).
Lawton & Rankin 2010 [39] To establish how, and why, structured educational programmes work to foster changes in diabetes self-management practices Patients (n = 30) from UK DAFNE centres (n = 5). Recruited using an opt-in procedure, with purposive sampling of participants from the last two courses. Open, unstructured observation of DAFNE courses and in-depth interviews with participants lasting approximately 1 hour and carried out within one week of course completion. Patient interview topic guides were individually tailored based on observational data and included the following: history of their diabetes and health service contact prior to DAFNE, their experiences of managing diabetes over time, their motivations for attending DAFNE, any changes they had made to their insulin doses and other self-management practices post-course, and their views about how future courses could be improved. Data collected between June 2008 and February 2009. Iterative thematic analysis informed by social constructivist position. Data were analysed by two independent researchers, then cross-compared to explore interviewees’ underlying reasoning, discuss deviant cases, and resolve any differences in interpretation, and to reach an agreement on recurring themes. Data were organised into higher codes, “risk thermostat” was used as a conceptual starting point for the analysis. Eight themes: 1. Coming together in a group - overcoming isolation 2. The group based approach - enhanced learning 3. Life before DAFNE - cocooning and risk avoidance 4. Doing reviews - becoming a dose-adjusting subject 5. Supervised risk-taking 6. Recalibrating risk thermostats - drawing upon others’ experiences 7. Surveillance and shepherding 8. Rules and accountability.
Lawton et al. 2011 [40] To explore whether and why people with T1D change their food and eating practices in light of the FIIT training during a five day DAFNE course, and whether, and why, any dietary changes made attenuated or were sustained over time. Same participants as paper [39]. Same dataset as paper [39] but with the addition of further semi-structured interviews with patients at 6 and 12 months post-course, each lasting between 1 and 2 hours. Topic guides built on previous data collection. Data presented in this paper were elicited through questions about how and what ways participants’ perceptions and conceptualisations of food had changed as a result of FIIT conversion and the requirement to match insulin to carbohydrates. Data collected between July 2008 and February 2010. Same approach as paper [39] with the addition of longitudinal analysis to explore continuities and changes in participants’ dietary choice and eating practices over time, and the reasons for these. Within respondent accounts were also compared and contrasted between respondent accounts, enabling identification of overarching themes. Three themes: 1. Initial expectations and actual experiences of managing one’s diet using FIIT 2. Reasons for dietary continuity Subthemes: routinisation/ habituation; a lack of interest in food; eating on FIIT - freedom with new restrictions 3. Changing perceptions of food
Rankin et al. 2011 [41] To examine whether, and how, patients made use of FIIT practices and if these practices were sustained, to inform the development of effective long-term support for patients converted to flexible intensive insulin therapy. Same participants as paper [39]. Same dataset as paper [40] Data presented in this paper were elicited through questions about patients’ experiences of diabetes self-management prior to and after attending DAFNE, their contact with health services, everyday work/home lives and other issues affecting self-care. Same approach as paper [40] but with a specific focus on how FIIT had been implemented, whether, how and why this approach had changed or been sustained over time, and patients’ views about the advantages, disadvantages, ease and difficulties of integrating this regimen within their everyday lives. Three themes: 1. Commitment to FIIT 2. The importance of routines 3. Making FIIT therapy work - restricting and making adjustments to lifestyles
Lawton et al. 2012 [42] To explore patients’ experiences of, and views about, making adjustments to their insulin doses following the completion of a DAFNE course and over time. Same participants as paper [39]. Same dataset as paper [40]. Data presented in the paper were elicited through questions about the factors and considerations informing the kinds of dose adjustments made (or not made) post-course and over time. Same approach as paper [40]. Seven themes: 1. Experiences of adjusting quick acting insulin doses 2. Experiences of altering background insulin doses and mealtime ratios 3. Independent adjusters 4. Lack of confidence/ability - deference to health professionals 5. Lack of motivation and record keeping 6. Experiences of using corrective doses 7. Health service contact
Rankin et al. 2012a [43] To explore patients’ experiences and views of implementing clinically recommended blood glucose targets after attending a structured education programme Same participants as paper [39]. Same dataset as paper [40]. Data presented in the paper were elicited through questions about participants’ pre-course understanding of blood glucose readings, their views on implementing BG targets pre-course, their attainment and use of targets post-course, whether, in what ways and for what reasons, their approaches to using targets had changed. Same approach as paper [40] with a specific focus on continuities and changes in use of targets over time, and the reasons for this. Two themes: 1. Benefits of using targets post-course 2. Adapting and personalising targets over time Subthemes: simplifying targets; fear of hypoglycaemia; mitigating feelings of failure; elevating targets to address hypoglycaemia unawareness; healthcare professionals’ roles in adjusting targets.
Rankin et al. 2012b [44] To explore patients’ experiences of and views about: their healthcare and the support they receive post-course; unmet support needs; and their recommendations for future healthcare support. Same participants as paper [39]. Same dataset as paper [40]. Data presented in the paper were elicited through questions about patients’ views on their pre-course support, their post-course support needs, their experiences of attending structured follow up, their experiences of routine care, and their encounters with fellow course attendees and their views on any unmet support needs. Same approach as paper [40]. Four themes: 1. Seeking reassurance and trouble-shooting opportunities; 2. Experience of seeking support from health professionals Subthemes: healthcare professionals with relevant training; lack of support at routine hospital appointments; accessing educators 3. Organised follow up meetings Subthemes: attendance at group-based follow up; limitations of group based follow-up 4. Provisions to address unmet needs.
Lawton et al. 2013 [45] To explore participants’ experiences and views of self-treating hypoglycaemia and their reasons for following or not following course recommendations Same participants as paper [39]. Same dataset as paper [40]. Data presented in the paper were elicited through questions about factors and considerations informing their approaches to treating mild hypoglycaemia, including reasons for changing their management approach over time. As for paper [40]. Four themes: 1. Pre-course approaches to hypoglycaemia management 2. Reconfiguring practices in light of course attendance Subthemes: panic and disorientation; a chance to indulge 3. Developing and changing treatments strategies over time 4. Future support needs.
Rankin et al. 2014 [46] To explore patients’ experiences of, views about and need for, social support post-course and over time. A key objective was to identify better ways to help patients use their social support networks to implement and sustain diabetes self-management practices. Same participants as paper [39]. Additional information provided about patients’ domestic arrangements to provide context Same dataset as paper [40]. Data presented in the paper were elicited through questions at baseline about the role of social support, participants’ perceived importance of support from family/friends/colleagues, and expectations for how social support may change over time. At follow up interviews, questions asked about if and how social support changed over time and what other forms of support participants would like to receive. Same approach as paper [40]. Five themes: 1. Preferences for support Subthemes: minimal involvement, auxiliary forms of support; monitoring and policing 2. Post course changes to support 3. Parental support 4. Domestic and employment circumstances 5. Limitations of social support.
Heller et al. 2014 [47] Research monograph reporting findings from a broader programme of research which included a qualitative study about the barriers to self-management post course and over time and patients’ views about how they could be better supported to sustain use of a flexible intensive insulin approach. Qualitative part of the report presents data from same participants as paper [39]. Qualitative data from the same dataset as paper [40]. Qualitative data analysed using same approach as paper [40]. Qualitative data presented under two research questions: - what are patients’ experiences of self-management post-course and over time, and what barriers and facilitators do patients encounter? 5 themes: overview; habits and routines; food and eating practices; managing hypoglycaemia and using blood glucose targets; dose adjustments and health service contact. - how could patients be better supported to sustain course learning/a FIIT approach over time?
Lawton et al. 2014 [48] To explore participants’ experiences of using bolus advisors post course and over time and their likes and dislikes of this technology. Purposive sample (n = 42) of participants from seven REPOSE centres. Semi-structured interviews at baseline and 6 months (1 hour duration). Topic guides included: historical experiences of diabetes management and health service contact; perceived confidence/ability to undertake mathematical calculations; initial perceptions of bolus advisors; reasons for choosing/not choosing to use a bolus advisor; likes dislikes about the advisor; everyday experiences of using the advisor; reasons for following/not following recommended doses; perceived impact of the advisor on diabetes self-management; changes made to settings and parameters - by whom, how and why; information and support needed to facilitate effective use of advisors; recommendations for how advisor technology could be improved. Data was collected between November 2011 and April 2013. Thematic analysis involving comparison of individuals’ baseline and follow up transcripts to identify continuities and changes in the use of bolus advisors over time, and the reasons for this. Longitudinal accounts were compared and contrasted across participants. NVivo9, a qualitative software package, was used to support analysis. Three themes at baseline: 1. Motivations for and perceived benefits of using advisors 2. Initial experiences of using advisors 3. Calculating doses Two themes at follow up: 1. Dependency and deskilling; impact on disease self-management 2. Reasons for stopping/never starting. Themes cut across both MDI and pump users as the main issues and experiences reported by participants were found to be the same in both groups.
Heller et al. 2017 [49] Research monograph reporting the outcomes of the REPOSE trial; this included embedded qualitative research which explored patients’ experiences in both arms of the trial (MDI vs pumps) to aid interpretation of trial outcomes. Qualitative part of the report presents data from same participants as paper [48]. Qualitative data from the same dataset as paper [48]. Qualitative data analysed using same approach as paper [48]. Data presented in relation to cross-cutting improvements to quality of life, and as an aid to interpreting the quantitative quality of life data within the report.
Snow et al. 2013 [50] To explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with doctors and other healthcare professionals. Purposive sample (n = 21) from three established UK DAFNE centres. ‘New students’ took part in narrative interviews 1 week pre-course and then 3 months post-course. They were also observed during the course. ‘Graduates’ took part in retrospective narrative interviews. This totalled 32 interviews and 146 hours of course observation. Interview topic guides, informed by a patient advisory group, asked open questions about ‘how you have learnt to manage diabetes’ with prompts where necessary to elicit data about interactions with others (e.g. friends, family, work colleagues, healthcare professionals of all kinds). DAFNE curriculum and patient facing course booklet were also treated as data. Data was collected between September 2011 to January 2012. Transcripts and field notes were analysed using a mixture of thematic and structural narrative analysis. The ideal patient role being taught on DAFNE was compared with students’ personal life stories, and with their stories of others’ expectations of them once the course was over. Interviews were supplemented by observational data where they had told personal stories. Participant data was analysed separately and then cross-compared to elicit wider themes about how health professionals and lay people responded to their new status as DAFNE graduates. Three themes: 1. Expectations - the role of expert patient 2. Experience - taking on the new role 3. Consequences - a clash of roles.
Snow et al. 2014 [51] To explore the role of targets in teaching patient self-efficacy and self-management, including an exploration of the conflict between the ideal and the reality for people taking part in education. Same participants as paper [50]. Same dataset as paper [50] but with the additional use of ‘touchpoints’ (participants were asked to describe a moment when diabetes management may have been explained to others at home, in the work place or with different types of health professionals). Not described. One theme - Reaching set HbA1c targets, with subthemes of ‘knowledge is power’, and ‘tricky but you can do it’
Shuttlewood et al. 2015 [52] As part of a broader programme of research a qualitative study explored patients’ experiences of the DAFNE-HART intervention and its impact on how they managed and addressed impaired awareness of hypoglycaemia. 24 adults with ongoing problematic hypoglycaemia were recruited from two UK DAFNE centres to attend a DAFNE-HART course. 21 of the 24 participants took part in the qualitative evaluation. In-depth telephone interviews conducted immediately post-course. Topic guides explored: participants’ reasons for agreeing to attend the course, how they felt about the group format, what aspects they liked or disliked, how they thought the course could be improved and the perceived impact the course had on their attitudes towards and experiences of preventing and managing hypoglycaemia. Dates of data collection not reported. Inductive thematic analysis supported by NVivo. An initial coding frame was developed based on the research questions and a review of the literature and refined in response to concurrent data collection and analysis. Each transcript was read through several times to produce an initial description of the patterns in people’s experiences, i.e. the semantic themes. These were further organised into hierarchical themes, highlighting where experiences clustered and where they diverged. Five themes: 1. changes in diabetes management 2. regaining cues 3. new diabetes-related cognitions 4. the dynamics of the programme – people and place 5. relationship with care provider
Knight et al. 2016 [54] To obtain user feedback on the usability of the RapidCalc app in adults with T1DM already experienced in flexible MDI to inform further development of the app and identify user preferences. Graduates (n = 7) who had completed a standard DAFNE course within the past 13 months. Single focus group, lasting approximately 2 hours, held one month after being provided with, and educated in the use of, the RapidCalc app. The focus group was led by a diabetes educator unconnected with the development of the app and followed a semi-structured format, focusing on satisfaction, usability, learnability, efficiency, memorability, errors and future improvements. Dates of data collection not reported. The focus group was transcribed verbatim and analysed by two independent researchers using thematic analysis. Themes were coded according to specific app features to highlight the features that participants found useful or not. Three themes 1. bolus calculator features and trust 2. diary report features 3. satisfaction and control