This article sets out the development of the theory of change for Project Carer Matters and how it illuminates the linkages and causal relationship between the set of inputs, activities, and the organisation’s desired outcomes for the family caregiver support project, specifically highlighting the rationale behind the interventions. To achieve this, a participative process was intrinsic to the building of the initial logic model and subsequently, the theory of change model. A combination of insights gathered from 1) literature reviews; 2) prior research studies conducted on caregiver stress and mastery during the post-discharge hospital-to-home transitory phase; 3) stakeholder engagement sessions and 4) multiple dialogues with clinical experts and hospital leaders where expertise was provided, highlighted the importance of caring for family caregivers so that they can better care for their older care-recipients. Given that the existing care model in the hospital and the community are patient-centric in nature, Project Carer Matters was implemented as a caregiver-centric project that aimed to alleviate the current gaps in caregiver support. This has promoted a paradigm shift from a patient-centric care to a care model that supports both the patient and caregiver.
However, in the process of developing a theory of change and pilot testing the Project, it is clear that while the interventions were initially planned out through theory, frequent amendments and adaptations are required to anchor the interventions’ feasibility in the healthcare system’s fast-paced environment. From a conceptual standpoint, the Project’s lead and implementation team were clear of the Project’s goals, the desired short- and long-term outcomes as well as the interventions required to manifest the change. However, it takes continuous collaborative efforts from stakeholders, healthcare leaders, implementers, collaborative partners, as well as the caregivers themselves to initiate changes, as illustrated in our theory of change model. As suggested by Vogel (2012), a theory of change can enhance the impact of interventions as they stimulate practitioners to include the perspectives of various stakeholders when theorising how the overall intended outcomes could be best achieved by a complex intervention [39–40].
In this article, the theory of change has evolved with time. While the initial theory of change was used to guide the design and implementation of the Project in its pilot phase, evaluation of the Project’s feasibility led to further modification of the theory of change. Stakeholders’ involvement in the development of the theory of change also created a sense of ownership and buy-ins from relevant stakeholders [41]. Ideally, all stakeholders should have ownership over the theory of change [42]. However, due to the complexity of the Project, this is often difficult to execute in practice. Hence, Project Carer Matters focused on implementation ownership, whereby the implementation team assisted in fact-checking and confirming the final theory of change. The final theory of change could also be potentially used as a conceptual tool to guide the implementation of Project Carer Matters and bring about the hypothesised changes in the near future. According to Breuer et al. (2016) ‘s checklist for reporting Theory of Change in Public Health Intervention, domain 5 includes the use of the theory of change in project evaluation. In this report, our final theory of change has yet to be used for further evaluation of the Project. Given that the theory of change evolves alongside the interventions of Project Carer Matters, it is suggested that the theory of change be used to guide future large-scale implementation and evaluation of the Project specifically through a quantitative measurement of the outcome indicators in relation to its interventions.
Family caregivers are the main beneficiaries of Project Carer Matters, wherein they would be trained to possess skills and knowledge to care for their loved ones and ensure self-care in the process. They would also learn problem-solving techniques to overcome unforeseen or future caregiving obstacles and enhance their capacity to acknowledge and address their own caregiving needs and manage their caregiving burden and the associated negative emotions [5]. Ultimately, when caregivers cope well with their caregiving tasks with decreased distress, they will enjoy optimal health as they continue to provide sustained and effective care to their loved ones [28]. However, through the process of developing the theory of change for Project Carer Matters, it became clear to the evaluation team that the healthcare interventions could neither be solely patient-centric nor caregiver-centric. Even though the caregiver and care-recipient are two different individuals with different needs, their social and emotional well-being are often intricately intertwined [43]. Programme overlaps that arose between the Project and community healthcare providers were likely because the Project’s interventions were designed to be more caregiver-centric while the existing services offered by the community healthcare providers were designed to be more patient-centric. In the process of implementing the Project’s interventions and collaborating with the community healthcare providers, the importance and necessity to perceive the patient-caregiver dyad as one unit - addressing the needs of both the patient and their caregiver together - was realised. As evidenced in a previous study conducted on heart failure patients and their caregivers, it was found that patients' symptom burden led to caregivers' depressive symptoms while caregivers' caregiving burden contributed to patients' depressive symptoms. These interdependent relationships suggest that dyadic interventions focused on reducing burden and perceived stress may be beneficial for relieving depressive symptoms in patient–caregiver dyads [44]. Future studies could consider dyadic interventions in supporting both the patient and their caregiver when transiting from hospital to home, and subsequently into the community.
From hospitalisation to post-patient discharge, Project Carer Matters was initially designed to support caregivers in a stepwise manner, starting from screening and identifying caregivers at the point of patient admission. The identified at-risk caregivers would subsequently receive interventions that would augment their caregiving skills, knowledge, health, sense of capability and mastery and subsequently improve their kinship with their loved ones [21]. However, in reality, caregivers may not participate in or complete all of the Project’s interventions. Caregivers’ needs are dynamic and ever-evolving throughout the course of their care-recipient’s illness and their own lifetime; this means that caregivers would require different types of services and support at different points in their caregiving journey. Additionally, developing a long-term relationship with caregivers would be necessary to facilitate continuous engagement rather than one-off interactions that tend to be more transactional in nature. In essence, the theory of change model illustrates how caregivers may embark on different causal pathways as part of the Project’s interventions, which eventually leads to the mapped varied short- to long-term outcomes. The theory of change further emphasises that there is no ‘one size fit all’ programme for caregivers who are diverse individuals and interventions should be tailored according to caregiver’s heterogenous needs and coping ability.