Experiences on health-related quality of life of Jordanian patients living with heart failure: A qualitative study.

BACKGROUND: Quantitative studies have provided valuable statistical insights into Health-Related Quality of Life (HRQoL) among patients with Heart Failure (HF), yet they often lack the depth to fully capture the nuanced, subjective experiences of living with HF particularly in the specific context of Jordan. This study explores the personal narratives of HF patients to understand the full impact of HF on their daily lives, revealing HRQoL aspects that quantitative metrics often miss. This is crucial in developing regions, where the increasing prevalence of HF intersects with local healthcare practices, cultural views, and patient expectations, providing key insights for tailored interventions and better patient care. METHODS: Utilizing a phenomenological qualitative design, this study conducted face-to-face semi-structured interviews with 25 HF patients to deeply explore their lived experiences. Thematic analysis was employed to identify major themes related to their perceptions of HF as a disease, its impact on various HRQoL domains, and their recommended strategies to enhance HRQoL. RESULTS: The study involved 25 participants (13 males, 12 females), aged 26-88 years (mean 63), with diverse education and heart failure (HF) severities. It revealed three themes: HF perceptions, its impact on health-related quality of life (HRQoL) across physical, psychosocial, spiritual, cognitive, and economic domains, and HRQoL improvement strategies. Participants had varied HF knowledge; some lacked basic understanding. The physical impact was most significant, affecting daily life and causing symptoms like breathing difficulties, coughing, edema, and fatigue. This physical aspect influenced their psychosocial and spiritual lives, cognitive functions, and economic stability, leading to fear, frustration, worry, social isolation, spiritual and cognitive challenges, and employment problems. CONCLUSIONS: The results underscores the need for holistic healthcare approaches, integrating medical, psychological, and social support. Key recommendations include integrated care models, comprehensive patient education, support networks, and policy interventions to enhance HF patient care.

Palliative and Supportive Care for Patients with End-Stage Hepatocellular Carcinoma: Perspectives of Egyptian Domestic Caregivers.

OBJECTIVES: Palliative care is a holistic, patient-centered approach to improving the quality of life for those with terminal diseases and their families. The main objective of the current study was to evaluate the Egyptian domestic caregivers' knowledge, attitudes, and competencies related to palliative and supportive care. METHODS: Three hundred and thirty-five family caregivers in total were recruited. A descriptive research design was used. Four tools were used to collect data; structured interview questionnaire to collect demographic questions, palliative care knowledge questionnaire, Palliative Attitude Scale, and Competence Scale. The study was conducted in oncology outpatient and pain clinics located at the Damietta Cancer Institute in Damietta Governorate, Egypt. RESULTS: Nearly two-thirds of the informal family caregivers are aged between 30-40 years old; 54% are female, and 83% are married. Also, sixty-seven point eight of the informal family caregivers were working (part-time). Furthermore, 65 % of them had insufficient knowledge, 68 % had a positive attitude, and 58% of the informal family caregivers had non-competency skills regarding palliative and supportive care. CONCLUSION: Approximately two-thirds of informal care providers had insufficient total knowledge scores, more than half possessed a positive attitude, and more than half reported non-competency skills regarding palliative care of hepatocellular patients. RECOMMENDATION: It is highly advisable to launch extensive health education programs and campaigns aimed at all of the unpaid informal family careers of patients with serious terminal illnesses, including hepatocellular carcinoma, at various governments with greater sample sizes.