Psychosocial impacts of dysphagia on informal caregivers of individuals with neurological disorders: a qualitative template analysis

The experiences of caregivers in the management of neurological oropharyngeal dysphagia (OD) and dysphagia’s subsequent impact on their quality of life constitute a pivotal yet under-acknowledged facet of person-centred care. This study investigated the impact of dysphagia on the quality of life of caregivers of individuals with different neurological conditions (motor neuron diseases, stroke, Parkinson’s disease and parkinsonism). Thirty-one informal caregivers of adults with OD participated in semi-structured interviews (mean age: 67.8 ± 16.4; 84% female). Interviews were analysed using a template analysis approach, starting from the “a priori” themes derived from the Caregiver Quality of Life Framework developed by Martin and colleagues (American Journal of Health Promotion, 35(7), 1042–1045, 2021). A total of 2305 quotes were categorised into 4 main themes, 24 sub-themes and 71 codes. A high level of intercoder agreement was achieved (Cohen’s κ = 0.93). The results revealed the impacts of OD on caregivers across multiple domains, including physical, social, and psychological, as well as issues related to the environmental context. Despite challenges, positive experiences and personal and social resources were also highlighted. Caregivers also reported feelings of acceptance and resilience, with several noting a strengthened bond with their family member. Isolation can be a challenge, but positive adaptations to shared mealtimes were reported, and support groups were helpful. The primary unresolved needs are related to a lack of support from the Health System. Managing OD is possible because of the vital role of caregivers: they have learned behaviours and strategies to support their care recipients. Family-centred care, specialised teams, psychological support, home assistance and mutual aid groups can boost caregivers’ well-being.