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- “The roller coaster ride of heart failure”: nursing staff’s perceptions of dignityPublication . Sampaio, Carlos; Renaud, Isabel; Leão, Paula PonceObjective: The main aims of this study are to a) uncover the nurse´s perceptions of dignity based on their experiences; and b) identify ethical issues experienced by nurses when confronted with individuals with advanced heart failure. Methods: This study has a qualitative design with an inductive approach using focus group (FG) interviews with registered nurses who meet patients with HF and their family caregivers on a daily basis. A total of 18 Portuguese registered nurses, from two hospitals and two primary health care centers, were distributed across 4 FG. Interviews occurred over a period of about 4 months. Data were analyzed using qualitative content analysis; Results: The participants emphasized the importance of dignity as ‘being seen as a person’ and ‘respected for the person one is’. The ´roller coaster ride of heart failure` is like a pilgrimage that serves to maintain the patient’s dignity within the strictures of the sick person’s role. Addressing the physical, emotional and spiritual needs of patients promotes their dignity, while neglecting their needs threatens their dignity. Three main themes captured the range of ethical problems when nurses care for people with advanced heart failure: 1) Quality of life versus length of time left; 2) Curative versus palliative interventions; 3) Unpredictable and quick death versus expected and prolonged death. Conclusion: Respecting and protecting dignity is an essential piece of good, ethical, and competent nursing care.
- Illness trajectory in heart failure: narratives of family caregiversPublication . Sampaio, Carlos; Renaud, Isabel; Leão, Paula PonceObjective: 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 phenomenological-hermeneutical method inspired by the Ricoeurian philosophy. Portuguese caregivers for relatives with advanced HF participated in two reflective interviews over a four-month 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.