Illness trajectory in heart failure: narratives of family caregivers

• Autor(a) principal: Sampaio, Carlos
• Data de Publicação: 2019
• Outros Autores: Renaud, Isabel, Leão, Paula Ponce de
• Tipo de documento: Artigo
• Idioma: eng
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: http://hdl.handle.net/10316/107331; https://doi.org/10.1590/0034-7167-2018-0645
• topic: Heart Failure; Family Caregivers; Personal Narratives; Qualitative Research; Caring; Insuficiência Cardíaca; Cuidadores Familiares; Narrativas Pessoais; Pesquisa Qualitativa; Cuidado; Insuficiencia Cardiaca; Cuidadores Familiares; Relatos Personales; Investigación Cualitativa; Cuidado; Adaptation, Psychological; Aged; Aged, 80 and over; Caregivers; Cost of Illness; Female; Heart Failure; Humans; Male; Middle Aged; Qualitative Research; Quality of Life; Stress, Psychological; Personal Narratives as Topic

To explore the meaning of being a family caregiver for a relative with advanced heart failure (HF) in their own home, and to gain an understanding of how dignity is upheld in family caregiving contexts. Method: We used a phenomenologicalhermeneutical method inspired by the Ricoeurian philosophy. Portuguese caregivers for relatives with advanced HF participated in two reflective interviews over a fourmonth period. Results: The ten family caregivers enrolled in this study included two daughters and eight spouses with a mean age of 70 years. We identified two main themes: (1) Struggle between inner force and sense of duty; (2) Struggle between feelings of burden and security. Final considerations: People with HF have debilitating symptoms associated with psychological stress, which can burden both them and their family caregivers. Findings support that family caregivers require participation in the planning and execution of their relative’s health care.