Background: Set against the backdrop of a rapidly ageing population and growing emphasis on the importance of ageing-in-place, family members often assume the role of a caregiver. Navigating through a complex healthcare system while simultaneously juggling the daily care needs of their care-recipients, caregivers often become worn out by the intense caregiver stress and burden, neglecting their own well-being. This translates to adverse health and economic outcomes such as prolonged hospital stays and increased nursing home placement of care-recipients. Seeking to better support caregivers, we developed a theory of change to guide the design and implementation of a caregiver support programme - Project Carer Matters.
Methods: We applied theory of change methodology to explain how the Project's interventions were hypothesised to lead to their identified short-to-long term goals, drawing on a causal analysis based on available evidence. The theory of change was developed with insights garnered from previous research studies conducted on caregiver stress, stakeholder engagement sessions and multiple dialogues with clinical experts and hospital leaders.
Results: Our final theory of change is the result of the evaluation of the Project in its pilot phase. It is populated with the resources, activities and short-to-long term outcomes that can be attributed or linked to the Project. Multiple meetings and discussion with stakeholders over the pilot prompted frequent practice of the Plan, Do, Study, Act model to refine the ongoing implementation process and the theory of change itself.
Conclusions: A theory of change is essential in guiding the design, implementation and evaluation of a complex health care intervention such as Project Carer Matters. The development of the theory of change is a journey and not a resultant product. This journey has also led us to learn that 1) a theory of change needs to be dynamic and ever evolving with time and context, 2) the perspectives of relevant stakeholders need to be included in this process to ensure the feasibility and sustainability of the project in the long run and 3) frequent stakeholder engagements are essential in enabling the implementation team to fine-tune the Project in an effective manner.
Trial registration: ClinicalTrials.gov , NCT05205135, registered on 24/01/2022.
Keywords: Caregiver burden; Caregiver support programme; Caregivers; Carer stress; Implementation; Older persons; Theory of change.
© 2024. The Author(s).