Abstract
Background: Frailty is a multidimensional syndrome that affects around 11% of community dwelling adults aged 65 and above; these numbers are increasing globally. Older people living with frailty are vulnerable to sudden deterioration and fluctuating capacity, and often receive poor end-of-life care. Advance care planning can support person-centred end-of-life care by helping people articulate their beliefs, values, and preferences regarding their future care. Advance care planning is particularly relevant to older people living with frailty due to their vulnerability to sudden deterioration. However, advance care planning is relatively uncommon with this population due to multiple complex reasons.Aim: To develop and refine an intervention to increase advance care planning engagement with older people living with frailty.
Methods: Intervention development was guided by the Medical Research Council framework for complex interventions and the Behaviour Change Wheel guide to developing interventions. A multiphase, mixed-methods design was used to explore the barriers, enablers, and behaviours necessary to better engage cognitively able, domestic-dwelling older people living with frailty with advance care planning. A systematic integrative review informed the development of a conceptual model of the behaviours necessary to facilitate advance care planning with older people living with frailty. A three-round e-Delphi consensus exercise was conducted with health and social care professionals and semi-structured interviews were conducted with older people living with frailty and family members. The e-Delphi consensus exercise and semi-structured interviews explored participants’ experiences and attitudes to advance care planning, and suggested strategies to better engage older people living with frailty with advance care planning. Based on these findings, and underpinned by the Behaviour Change Wheel, the prototype intervention was developed, and a refinement exercise conducted.
Results: The systematic integrative review included 42 studies (paper 1). Findings were analysed, synthesised and developed into a conceptual model to understand the behaviours necessary to better implement advance care planning with older people living with frailty, and to underpin empirical data collection and intervention development. Key findings included that implementing advance care planning with older people living with frailty requires a systemwide approach that recognises the importance of relationships, relational decision-making, and living well now. Findings emphasised the importance of early engagement with advance care planning, and that all stakeholders (frail older people, family, and health and social care professionals) had educational needs, including the need to understand the relevance of advance care planning for frail older people.
The three-round, national, e-Delphi consensus exercise (n=73 professionals in round one) examined the perspectives of community-based health and social care professionals from the UK. Round 1 of the e-Delphi achieved a high consensus (82%). These findings verified the conceptual model from the perspective of health and social care professionals and enabled rounds two and three to be modified to collect data that contributed more directly to intervention development. Key findings included that participants believed older people living with frailty should be provided with time and the appropriate resources to engage with advance care planning, and that conversations should start early and take place over multiple conversations. Findings also emphasised that participants believed health and social care professionals should receive appropriate advance care planning education, including information regarding the frailty trajectory and the advance care planning needs of older people living with frailty.
The semi-structured interviews (paper 2) explored the thoughts and experiences of older people living with frailty (n=10) and family members (n=8) to advance care planning. Key findings were that older people living with frailty and family members were willing and able to talk about advance care planning, but that there was a lack of clarity regarding advance care planning language and what it meant for this population. Findings also demonstrated that frail older people placed more importance on relationships, relational decision-making, and living well now than planning for the future, and often did not see the relevance of advance care planning to themselves. During the interviews participants were asked to suggest strategies that may support older people living with frailty to engage with advance care planning. Suggested strategies included preparing older people living with frailty for advance care planning conversations, starting advance care planning conversations with living well now, and discussing advance care planning as part of normal, everyday conversations.
The Behaviour Change Wheel, with patient and public involvement, was used to develop the prototype intervention based on the findings of the review, e-Delphi consensus exercise, semi-structured interviews and the refined conceptual model. The Conversations on Living and Dying (CLaD) prototype intervention consists of a 3.5-hour educational skills session for health and social care professionals augmented by a toolkit to support learning in practice. Content focused on the relevance of advance care planning to older people living with frailty, frail older people’s experience of advance care planning, and strategies that professionals can adopt to encourage frail older people to engage with advance care planning. The prototype was delivered to health and social care professionals (n=26) via Zoom. Participants completed pre- and post-intervention questionnaires and took part in a focus group or interview (n=24) to discuss their thoughts on the prototype and suggest refinements. Suggested refinements included the addition of role play to the education session, revising the toolkit to make it more succinct and add an aide memoire, and developing an advance care planning leaflet for older people living with frailty. Intervention development and refinement is presented in paper 3.
Conclusions: This thesis addresses a gap in the literature regarding the barriers, enablers and behaviours necessary to engage cognitively able, domestic-dwelling older people living with frailty with advance care planning. This is important in the current context of contemporary dying where people are living longer, often with growing disability and greater dependency, and are dying at a greater age. For older people living with frailty, dying is often prolonged and can follow an uncertain trajectory. This makes engaging with advance care planning particularly relevant.
Key overarching findings are that older people living with frailty are willing to engage in advance care planning, particularly if it is reconceptualised as something that includes relational decision-making and living well now. Findings also suggest that early engagement in advance care planning is important for older people living with frailty for multiple reasons, and that this population are more likely to engage with advance care planning if they are prepared for conversations. Findings have also demonstrated that health and social care professionals recognise the value of education to help them facilitate advance care planning with frail older people, particularly if this includes a greater understanding of frailty and the advance care planning needs of this population.
The findings of this thesis include the development of a conceptual model of the behaviours, factors and requirements necessary to engage community-dwelling older people living with frailty with advance care planning. This can be used by professionals, organisations and policy makers as a starting point to improve advance care planning engagement with older people living with frailty. This thesis also provides an evidence-based, theory-driven, and person-centred prototype intervention. The CLaD prototype intervention incorporates the views and experiences of older people living with frailty, family members and health and social care professionals. The prototype refinement exercise demonstrated that health and social care professionals find the prototype acceptable, engaging, and clinically valuable. While the intervention now requires further refinement and a process of evaluation with all stakeholder groups, it can be used by professionals and organisations to support health and social care professionals to engage older people living with frailty with advance care planning.
| Date of Award | 1 Mar 2022 |
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| Original language | English |
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| Supervisor | Christine Norton (Supervisor), Karen Gillett (Supervisor) & Caroline Nicholson (Supervisor) |