Self-management support and goal setting in group programmes for long term conditions

Abstract

Long-term conditions (LTCs) exert a significant burden on individuals, communities, healthcare systems and society. Health systems are placing an increasing focus on support for patient self-management. The literature on LTCs shows the broad and interconnected medical, emotional and social impacts of living with LTCs. This research has informed contemporary LTC self-management support policies which emphasise that the provision of support for self-management should take into consideration and give equal importance to the range of medical, social and emotional aspects of living with LTCs. These policies also emphasise that support for self-management be focused on patient defined goals for what patients see as relevant and meaningful for them in daily living and as such, they promote goal setting as a tool for health professionals providing self-management support. However, research shows that health professionals providing self-management support have tended to prioritise goals focused on the medical management and clinical outcomes over the goal preferences of patients with LTCs. This suggests that there may be a misalignment between the self-management goals that matter to individuals and those focused on by health professionals and healthcare systems when supporting patients to achieve these goals. Group programmes led by health professionals are a common healthcare approach to supporting LTC self-management. Groups provide opportunities for self-management support from both health professionals facilitating programmes and from peers (other participants in groups). Yet, there is still little known about how self-management support is interpreted, enacted and valued within group programmes by group facilitators and group participants, what role goals play in group programmes for self-management, and how facilitators and participants engage with goal setting. Research investigating the experiences of facilitators and participants of self-management support in health professional led group programmes remains sparse, especially in the Australian healthcare setting. To address these key research gaps, this thesis aims to: 1) to review the literature on the experiences of participants and facilitators of self-management group programmes; 2) to investigate how health professional facilitators conceptualise self- management support provided in group programmes; 3) to explore the support participants receive in group programmes, and how they perceive it; and 4) to examine how both facilitators and participants perceive and engage with goal setting elements of group self- management programmes. This doctoral work is conducted as part of a larger project, funded by an Australian Research Council Discovery Grant (DP150101406), titled: ‘How do people with chronic conditions and their healthcare providers negotiate the self-management imperative?’ This thesis focuses on one part of this project: self-management support provided in group programmes. This qualitative study was conducted in NSW, Australia between 2015 and 2017. Six diverse self- management support group programmes (for individuals with chronic obstructive pulmonary disease (COPD), type 2 diabetes and obesity) were included in the study. To investigate the experiences of participants and facilitators of group programmes for the self-management of LTCs a systematic review and thematic synthesis of the qualitative literature was conducted (paper 1, Chapter 2). The findings revealed little in-depth exploration of the experiences of facilitating or participating in group programmes. Group participants valued being with similar others and perceived peer support benefits. Facilitators had limited group specific training, were uncertain of purpose and prioritised education and medical conformity over supportive group processes and the promotion of self-management agency and engagement. Overall, the studies prioritised positive descriptions. In paper two (Chapter 3) we sought to provide a more in-depth investigation of the perspective of health professional facilitators providing self-management support in group programmes (n=13) across the six study programmes . The aims of the paper were to explore how group facilitators conceptualise self-management support in a group programme, their experiences of facilitating, their perception of their role and the challenges they identified. We found that facilitators viewed the group programmes as responses to health system pressures, for example, high patient demand. They focussed on providing education and instruction on physical health, risks and lifestyle behaviour change, and emphasised self- responsibility for behaviour change whilst minimising goal setting and support amongst group participants. There were tensions between facilitators’ perceptions of their professional identity and group leader roles. In paper three we explored the experience of the group participants (n=20) and what support they receive and perceive in health professional-led self-management support group programmes (Chapter 4). We aimed to identify the different types of support that group participants in self-management support group programmes receive and exchange between both facilitators and peers, and how they value this support. We found that participants identified receiving information and emotional support from both facilitators and other participants as complementary yet distinct. Facilitators’ support came from professional training and other participants’ support reflected the contextual, lived experience of LTCs. Professional interactions were prioritised, constraining opportunities for participant- participant support to be received and exchanged. In paper four we examined how health professional facilitators and their group participants perceived and engaged with the goal setting activities in the group programmes (Chapter 5). The aims of the study were to examine the experiences of both patients and health professional facilitators regarding goal setting, what goals participants have, and howfacilitators and participants talk about their experiences of, and engagement with, goal setting in programmes. We found that participants have personal and meaningful biomedical, social and emotional goals. Facilitators believe these goals to be important and perceive them as integral to increasing motivation and self-responsibility. Despite participants having social and emotional goals, facilitators work to shape participants’ goals into pre-determined health behaviour change activities, disregarding social and emotional aspects. Participant disengagement from the goal setting process and questioning of the value of goal setting was evident. Conclusion The research reported in this thesis provides empirical evidence of how self-management support in group programmes led by health professional facilitators is perceived and engaged with in practice. Health professional facilitators of group self-management support programmes prioritise education and instruction over broader medical, social and emotional aspects of self-management that are important for people with LTCs. The thesis also reveals there is a disconnect between health professional facilitators and group participants in how they experience and what they value for self-management in groups. Our findings show that participants value support from the other participants in the group as well as from health professional facilitators. Importantly, they also valued support that is inclusive of their social and emotional lives as well as medical support. This has important implications for practice and how self-management support could be achieved in groups to better meet the needs of people with LTCs. A conceptual change is required for health professionals to meet the self- management support ideals articulated in policy. This change could begin by conducting goal setting in a manner more broadly inclusive of patient preference, and therefore more likely to be engaged with. These findings have important implications for policy and practice. In particular it suggests that changes may be needed at the system and policy levels to ensure better accountability of health professionals providing self-management support. Achieving practice change will be challenging due to, for example, the ways in which healthcare professionals are educated, trained and socialised and the system constraints within which they are working. Future research is needed to consider how health professionals are able to provide self-management support in group programmes that does more than reinforce medical information, instruction and behavioural norms.