The factors that support people living with Type 1 diabetes to incorporate an insulin pump into their everyday lives

Abstract

Good self-management (SM) of Type 1 diabetes (T1D) has the potential to avoid or delay life-threatening and life-limiting complications and improve quality of life, yet is characterised by a demanding, multi-component regimen. The use of insulin pump therapy is growing internationally and has been posited as a way to support better SM of T1D. However, as a complex new technology unique challenges are faced, including complicated requirements for troubleshooting, incorporation and adaptation and carrying an object on the body 24/7. Providing people with SM support to incorporate this technology could improve the lives of people with T1D. However, the dominating biomedical approach to treatment of T1D and incorporation of insulin pump therapy is not enabling appropriate SM. In response, this thesis explores the SM needs of this population and tests a new approach to SM support which is sensitised to a social network approach, underpinned by Social Cognitive Theory. This approach could enable people with T1D to self-manage better and reduce challenges of introducing and living with an insulin pump by examining interactions with wider personal social networks and utilising these personal networks to support SM.
Three papers make up the core of this thesis. The first describes a Critical Interpretive Synthesis (CIS), which examined what is known about the lived experience of insulin pump therapy. The second paper describes focus groups with insulin pump users and healthcare professionals (HCP), examining problems and challenges to SM using insulin pumps and the potential of a social network intervention to support SM. The third paper describes the implementation of a social network intervention (named GENIE) with people initiating insulin pump therapy over 6 months using qualitative semi-structured interviews, questionnaires and intervention outputs (number, frequency of contact and value of network members and uptake of new activities), and was analysed using thematic analysis.
Three themes were identified from the CIS which revealed and enlightened the complex process of incorporation of an insulin pump: there were evidently tensions between expectations and experiences in adoption and early adaptation of the device; and a need for negotiation of responsibility and accessing support; and a process of reflexivity, active experimentation and feedback. The focus groups identified key SM needs during incorporation of pump therapy and described the necessary contents of in an intervention to support SM with pump therapy and strategies for implementation. Four themes of importance were ascertained: a need for access to tailored and appropriate resources and information; specific social-support preferences; capacity and knowledge of pump clinic HCPs; professional responsibility: “risks and dangers”. The third paper captured the process of adjustment and incorporation of the device over time. Key themes included: The independent nature of managing diabetes; overcoming the challenges and illness-burden of pump therapy; the need for responsive and tailored emotional and practical support, and; useful resources when incorporating a pump. GENIE was thought to be novel and beneficial through determining the resources and support people with T1D require when incorporating a pump, visualisation of support networks to consider and mobilise support and the ability to identify and engage in new activities as needs changed.
It was identified that SM support needs to be flexible, personalised, and perceptive of the wider context of personal communities and access to resources. Collective participant needs often fluctuated, requiring an initial period of intense support and contact, largely from HCPs and peers, for active-experimentation and adjustment, but in a manner that was sensitive to their life schedules. This thesis offers a new understanding of the SM needs of people with T1D using pump therapy, and provides a means in which to support this population to self-manage using a novel and evidence-based approach which utilizes a system-wide approach to SM support. While this work addresses specific T1D and pump therapy needs, it can also provide an exemplar for incorporation and adaptation of other new technologies in diabetes and other long-term-conditions, and demonstrates the use of a SM support tool which can be adapted and sensitised as necessary.

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ORCID for Claire Foster: orcid.org/0000-0002-4703-8378

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