Supporting caregivers, including across survivorship, is of key importance to ensuring caregivers are able to continue providing long-term informal support to cancer patients in the community. Current cancer caregiving literature suggests that caregiver report unmet needs related to their physical, psychological, and social wellbeing, and caregiving role. However, there is little evidence to support the implementation of current psychosocial interventions for caregivers into practice, with a lack of specific focus on the needs of caregivers in survivorship. There is, therefore, a need for more robust intervention development to ensure programmes target the key issues affecting caregivers and those who are still reporting high levels of need in survivorship. This PhD thesis describes the systematic process of developing a psychosocial intervention to support informal caregivers in post-treatment cancer survivorship, specifically setting out to determine who and what the intervention needed to target, and how and when this needed to be delivered.
This study used a two-phased multiple methods research design guided by the Behaviour Change Wheel (BCW). In phase one, a needs assessment was conducted to determine the key physical, psychological and social needs of caregivers in posttreatment survivorship, as well as contextual factors relating to the current provision and use of psychosocial supports within Northern Ireland. This included a systematic mixed studies review, and semi-structured interviews with healthcare professionals (n= 19) and post-treatment caregivers (n = 15). In phase two, the findings from each of these sources were used to inform the development and design of the intervention. The BCW guided the systematic selection of behaviours to be targeted by the intervention, intervention functions, policy categories, behaviour change techniques (BCTs) and mode of delivery. A final step in the development process involved the operationalisation of selected BCTs, and description of the proposed mechanisms of action and how the intervention might be implemented into practice.
Findings from the systematic review, and studies with caregivers and healthcare professionals indicated that survivorship was a psychologically-vulnerable time in which caregivers were adjusting to life after cancer, managing cancer-related anxiety and fear of recurrence, and perceived a lack of meaningful social support to address their needs. It was determined that change was needed in caregivers’ psychological capability, physical and social opportunity, and automatic and reflective motivation to (1) regularly perform self-care behaviours, and (2) use effective coping strategies to manage cancer-related anxiety/fear of recurrence across survivorship. Five intervention functions, and 12 BCTs were identified as relevant to include in an intervention aimed at improving post-treatment caregivers’ physical, psychological and social wellbeing. Individual-level, peer support was identified as the most acceptable mode for delivering intervention content. A draft of the proposed intervention is presented.
The work undertaken as part of this thesis addresses gaps in knowledge regarding how psychosocial interventions should be developed in the context of cancer caregiving. The results add to both the cancer caregiving and intervention development literature by describing and specifying the design, content and proposed mechanisms of action for an evidence-based and theoretically-informed intervention targeting caregivers in post-treatment survivorship. Recommendations for future research and practice include the refinement of the proposed intervention, with the need to include key stakeholders in the ongoing development and evaluation process.
|Date of Award||Jul 2020|
|Sponsors||Queen's University Belfast|
|Supervisor||Olinda Santin (Supervisor), Gillian Prue (Supervisor), Peter Hudson (Supervisor) & Sam Porter (Supervisor)|
- Behaviour Change Wheel
- Intervention Development