Purpose There is limited research on caregivers’ role in co-creating value in healthcare, especially in pathways like as the palliative care, despite their increasingly crucial contribution. This collaborative study, directly involving both practitioners and caregivers, aims to investigate the experience of family caregivers throughout the palliative care pathway using a multidimensional approach developed and validated in the first two phases of the research project. Design/methodology/approach This study encompassed two focus groups with purposively sampled bereaved family caregivers, facilitated by two psychologists with an observer-researcher. Audio recordings were collected with informed consent, transcribed and analysed thematically using NVivo software. Findings The findings revealed caregivers experience complex and evolving challenges, responsibilities – and its burden, throughout the care journey, depending on disease progression and care settings. The need for adequate training in nursing-like tasks, symptom management and medication administration emerged with a relevant emphasis when patients are in home setting. Hospice offered professional support, reducing physical burden but often provoking feelings of guilt. Two critical and fragile phases emerged: the initial phase of access to the pathway and the post-death period, when caregivers still require support despite the formal end of the care pathway. Originality/value The findings underscore the necessity of integrated, person-centred approaches and multidimensional tools able of capturing caregiving’s complex, dynamic and longitudinal experience. The results of this study can be used to inform a co-design process of the caregivers’ pathway in the end-of-life context. The study also points to the need for systemic change, since enabling caregivers requires health professionals to act as facilitators.
Severino et al. (Thu,) studied this question.