This is the first qualitative study to explore in depth and over time type 1 diabetes patients’ views about, and need for, health professional and health service support after attending a structured education programme promoting flexible intensive insulin therapy. The findings reported here lend empirical support to international guidelines and studies [9, 29, 40] which recommend providing continuing support to graduates of diabetes self-management education programmes. This study also offers insights into what forms of long-term support health care providers could consider making available to patients to best meet their own preferences, personal circumstances and perceived needs. Patients highlighted a preference and need for individualised and tailored inputs to accommodate their unique and personal experiences of self-management and of applying their insulin regimens in their everyday lives. Patients also expressed a need for this support to be ongoing and provided by professionals who had received training in the principles and practices taught on their course. While patients highlighted benefits to attending group-based follow-ups, principally to receive empathy and emotional support from peers, they described needing tailored, professional inputs post-course to optimise and sustain glycaemic control, and trouble-shoot issues of concern. Furthermore, patients highlighted a need for support which could be accessed as and when it was required and without them feeling they were burdening staff. To address unmet needs, patients suggested that readily accessible forms of support, such as a telephone helpline, could be provided by dedicated professionals trained to support their self-management approaches.
Peer support, often provided in a group-based setting, has increasingly been recommended as a potential model for the provision of diabetes self-management support . However, the clinical benefits of group-based support have recently been called into question in the findings from a RCT, conducted by Smith et al. . Consistent with findings of other studies of group-based peer support for type 2 diabetes patients, this RCT failed to show a significant impact on glycaemic control. Poor attendance at group meetings was also observed. Hence, these authors recommend that further research, including work focusing on alternative models of delivering support, be conducted. Our qualitative study adds to Smith et al’s concerns about promoting group-based support in diabetes clinical practice, particularly if this support is offered in isolation from other types of inputs and interventions. We have also provided insights into why group-based follow-ups may not necessarily be a popular or effective approach – albeit in this instance, through a focus on type 1 diabetes patients. Specifically, we have shown that a group-based approach may be incompatible with patients’ need for individualised input from health professionals post-course, to accommodate their specific and personal experiences of applying their treatment regimens in everyday life. In addition, prescheduled, group-based appointments, selected to ensure educators’ availability, were found to be incompatible with patients’ need to access health professional input as and when it was required. Although follow-up sessions enabled some patients to meet together, this format was deemed inflexible by those who had to juggle attending appointments with work and family commitments.
Like the type 2 diabetes patients Cooper et al. interviewed after attending a structured education programme , our study participants encountered frustrations and difficulties when post-course care and reviews were provided by professionals who lacked specialist knowledge and training in course practices and principles. As Cooper et al. suggest, not only are such professionals unable to provide the specific clinical input graduates may require to sustain the self-management approach taught on the course, they may also be unwilling to embrace, and work in partnership with patients who, by virtue of course attendance, feel more knowledgeable and empowered. Hence, Cooper et al. recommend that follow-up care be provided by staff trained in course principles and practices. Our findings lend support to Cooper et al. and, indeed, we would suggest that their recommendation to use appropriately trained staff is extended to graduates of structured education programmes for type 1 diabetes.
In addition, our findings suggest that patients attending programmes such as DAFNE may potentially benefit from the provision of a ‘menu’ of support options post-course and over time. Such a menu could incorporate differing degrees of professional inputs tailored to patients’ personal requirements, and which are responsive to changes in lifestyle. To this end, consideration in a future research study or pilot intervention could be given to suggestions made by our study participants, including provision of telephone- and/or email-based support and counselling, delivered by trained professionals. Such interventions have not yet been investigated in the context of follow-up care provided to graduates of structured education programmes for type 1 diabetes. However, they have been explored and promising results found in other studies which offer support to improve healthy eating, weight loss and self-management behaviours for patients with type 2 diabetes. In these studies, telephone- and email-based support have been shown to promote: maintenance of health behaviour change [44, 45]; increased use of self-care behaviours [46, 47]; and, positive impacts on glycaemic control . Such interventions have also been found to enable patient-centred approaches where clinicians’ information/advice can be customised to accommodate individuals’ life circumstances [49, 50] which, in turn, enhance self-care behaviours .
When piloting, developing and/or evaluating interventions to improve follow-up support for structured education programmes delivered to patients with type 1 diabetes, attention could also be usefully given to the ways in which traditional forms of service delivery can shape patients’ expectations and behaviour . For example, patients in our study did worry about burdening clinicians with their questions and concerns, and/or did not consider that they had the right to do this. Hence, some patients either did not ask for help at all or they withheld presenting their concerns until they could do so opportunistically at a scheduled review appointment, which could result in considerable time elapsing before a problem was resolved. To address patients’ concerns about over-burdening staff, follow-up support may thus need to be presented as an integral part of their care-package and, hence, as something that they can expect and feel entitled to ask for. Health care professionals might also consider initiating telephone contact with patients to establish their progress and support needs. In addition, provision of a dedicated phone or email service staffed by clinicians employed specifically for this purpose, may help overcome patients’ anxieties about burdening staff and enable them to seek help when questions and problems arise. Finally, our findings highlight a divergence between patients’ post-course expectations of clinical reviews and their need for detailed examination of blood glucose readings, and the emphasis clinicians placed on HbA1c readings. To address patients’ needs for specific advice on insulin dose adjustment, it may be necessary for staff delivering clinical reviews to explore reasons which underpin individuals’ day-to-day fluctuations in blood glucose readings.
Strengths and weaknesses
A key strength of this study is that the 12 month follow-up time-frame permitted longitudinal exploration of the types of support patients anticipated needing post-course, their likes and dislikes of support actually received, and identification of unmet support needs. However, as indicated above, patients’ support needs were similar at both six and 12 month follow-up. Hence, in future studies, researchers may wish to explore these issues at an earlier point in time following course completion. In terms of study limitations, it should be noted that as patients opted in (this being a requirement stipulated by the research ethics committee), they may have been more motivated to implement treatment practices taught on the course and/or more critical of existing care provisions. Furthermore, while some key findings resonate with those from studies involving type 2 diabetes patients [42, 43], our study was restricted to type 1 diabetes patients, and, more specifically, to those converted to flexible intensive insulin therapy. While patients in our study were required to adjust their own insulin doses, patients with other long-term conditions usually are only asked to make changes to lifestyle; hence the types of support necessary may differ between long-term conditions. To assess the generalisability of our findings, further work could be undertaken with graduates of other types of programme, and with other conditions, to determine whether our patients’ accounts of support needs are generalisable or specific to particular disease states and treatments. Future work could be undertaken to compare different approaches to follow-up that addresses the unmet needs identified in our study and which complements existing group-based provision. Further work would also be necessary to obtain health care providers’ views to explore how the approaches highlighted above could be operationalised most effectively.