July 23, 2025

PhD Program in Clinical Psychology - Family Psychology and Family Intervention

Ana Paula Relvas , Luciana Sotero e John Rolland

The emotional, physical and social impact of caring for a family member with cancer is widely documented and is a risk factor for physical and mental health. Despite the growing scientific evidence on caregiver burden, the available responses remain insufficient, especially in terms of intervention programs. Anchored in a systemic perspective, this research sought to gain a deeper understanding of the experiences of family caregivers in the context of palliative care (PC), aiming to develop and evaluate an intervention to mitigate the main challenges that were identified. Two main objectives were defined: 1) to characterize the challenges and strengths of family caregivers of cancer patients undergoing PC, considering the interaction between individual, family and institutional variables; and 2) to design, implement and evaluate an intervention that responds to these needs, promoting the quality of care provided. To achieve these goals, six studies were carried out using a mixed design. Study 1 consisted of a systematic review of the literature on interventions for family caregivers of cancer patients. Study 2 explored the impact of the Covid-19 pandemic on caregivers' lives and additional challenges. Three qualitative studies explored the experience of "being a caregiver" in PC: 1) Study 3 analyzed written records from PC institutions to capture professionals' perceptions of caregivers; 2) Study 4 used focus groups with family caregivers to explore challenges, resources and strategies for adapting to this role; and 3) Study 5 replicated this approach with healthcare professionals. Based on these results, Study 6 implemented and evaluated an intervention protocol for family caregivers, developed by the research team, using a pre-post-test design and a non-simultaneous multiple-base trial to assess its impact. The results showed the challenges faced by family caregivers of cancer patients undergoing PC and the resources mobilized to deal with this experience. Physical and emotional overload proved to be central, aggravated by the fear of not providing adequate care. Difficulties in communicating with the family and health teams, aggravated by asymmetries in information, were highlighted. Watching the person with cancer suffering was identified as one of the most demanding dimensions. During the Covid-19 pandemic there was restricted access to support, increasing social isolation. Despite the difficulties, the caregivers demonstrated resilience and adaptation strategies. It was found that social support, both formal (from the PC teams) and informal (family and friends) was essential in mitigating emotional suffering and overload. The relationship with the cancer patient, sharing meaningful episodes, and the validation of their role by professionals were identified as protecting factors. In addition, caregiving was described as a meaningful experience, often perceived as an opportunity to say goodbye or show affection. The implementation and analysis of the immediate impact of the CAIS Intervention - Intervention for Family Caregivers of Cancer Patients - revealed an improvement trend associated with the intervention in areas such as perceived burden, well-being and family functioning. The fluctuations observed suggest the need to explore the long-term impact of the intervention, particularly in terms of adjustment and integration of the experience into the participants' lives. Although the sample size limits generalizations in the study's conclusions, the results reinforce the importance of psychosocial interventions tailored to the needs of this population, promoting both the reduction of suffering and the strengthening of existing resources. This research has deepened our understanding of the needs and challenges of family caregivers of cancer patients undergoing PC, reinforcing the importance of interventions to enhance their resources. Despite the emotional and physical impact associated with this role, caregivers mobilize adaptation strategies and find important sources of resilience in social support and in the relationship with the sick person. However, the difficulties identified highlight the need for more structured and accessible responses. Our intervention proved to be promising, although ongoing adaptations are needed to ensure its applicability in clinical and community contexts. In addition to its empirical contribution, this work has implications for clinical practice and the formulation of policies to support family caregivers. The results could be useful in developing more accessible and effective intervention programs and community and institutional support strategies. In the future, it will be essential to assess the sustainability of these approaches and replicate the CAIS intervention in diverse samples to consolidate its impact.

Keywords: CAIS Intervention; Challenges and strengths; Family caregivers; Mixed methodology; Palliative care