Caregiver burden of individuals on dialysis and the meaning of participating in a support group: a mixed-methods study

Abstract

Introduction: The caregiver of a person on dialysis requires specific interventions aimed at self-care. Support group intervention is a strategy built in collaboration with individuals facing similar issues to share experiences and provide mutual support through planned actions. Objective: To characterize caregivers of individuals on dialysis, understand their burden, and comprehend the meanings constructed through their participation in a support group. Materials and Method: A mixed-methods descriptive study involving 68 caregivers was conducted. The quantitative phase utilized the instrument “Characterization Form of the Non-Communicable Chronic Disease-Patient Caregiver Dyad,” while the qualitative phase employed a hermeneutic phenomenological approach, consisting of 8 in-depth interviews. Results: The majority of caregivers were women, with an average age of 49.4±13.5 years. A high percentage had low socioeconomic status and education levels, with their main occupation being homemaking. Most were married and practiced the Catholic religion, had been providing care for 14 months or more, had no previous caregiving experience, and received some form of support to carry out their tasks. Some degree of burden was identified among them. The analysis of the interviews revealed emerging themes: learning through caregiving, finding understanding and solidarity, supporting each other’s needs, sharing the hardships of caregiving, accompanying each other in spirituality, and reorganizing to continue caregiving. Conclusions: Caregivers live in contexts that increase vulnerability, and for them, the support group provided a space for social support, well-being, accompaniment, and support from nursing care.