Perspectives on decision making amongst older people with end-stage renal disease and caregivers in Singapore: A qualitative study.

BACKGROUND: End-stage renal disease (ESRD) is increasing both globally and in Asia. Singapore has the fifth highest incidence of ESRD worldwide, a trend that is predicted to rise. Older patients with ESRD are faced with a choice of haemodialysis, peritoneal dialysis or conservative management, all of which have their risks and benefits. OBJECTIVE: This study seeks to explore perspectives on decision making amongst older (≥70) Singaporean ESRD patients and their caregivers to undergo (or not to undergo) dialysis. DESIGN: Qualitative study design using semi-structured interviews. SETTING AND PARTICIPANTS: Twenty-three participants were recruited from the largest tertiary hospital in Singapore: seven peritoneal dialysis patients, five haemodialysis patients, four patients on conservative management and seven caregivers. RESULTS: While some patients believed that they had made an independent treatment decision, others reported feeling like they had no choice in the matter or that they were strongly persuaded by their doctors and/or family members to undergo dialysis. Patients reported decision-making factors including loss of autonomy in daily life, financial burden (on themselves or on their families), caregiving burden, alternative medicine, symptoms and disease progression. Caregivers also reported concerns about financial and caregiving burden. DISCUSSION AND CONCLUSION: This study has identified several factors that should be considered in the design and implementation of decision aids to help older ESRD patients in Singapore make informed treatment decisions, including patients' and caregivers' decision-making factors as well as the relational dynamics between patients, caregivers and doctors.

Biopsychosocial experiences and coping strategies of elderly ESRD patients: a qualitative study to inform the development of more holistic and person-centred health services in Singapore.

BACKGROUND: As the incidence and prevalence rates of end stage renal disease (ESRD) rise globally, a disproportionate increase has been observed in the elderly population. Singapore has the fifth highest incidence of treated ESRD worldwide, with the upward trend of ESRD being most apparent among those aged 70 years and older. Although it is well-documented that ESRD patients suffer an impaired quality of life compared to the general population, there is limited research focusing on the unique experiences and needs of elderly ESRD patients in Asian populations. To address the knowledge gap, this study seeks to explore the impact of ESRD and dialysis on the quality of life of elderly (≥70 years old) ESRD patients in Singapore and examine the coping strategies utilised by these patients. METHODS: This qualitative study involved semi-structured, in-depth interviews with 7 peritoneal dialysis patients, 5 haemodialysis patients, 4 patients on non-dialysis supportive care and 7 caregivers in Singapore. Interviews were conducted in English, Chinese, and Malay and fully transcribed. QSR NVivo 11 software was used for analysis. RESULTS: Participants reported that ESRD and dialysis had an impact on three highly interconnected areas of their quality of life: (a) biological/physical (general symptoms, neuromuscular problems, skin problems and poor sleep quality); (b) psychological (depressive symptoms, anxiety and fears, stress and negative self-perceptions); and (c) social (increased dependence on family and loss of social life). There were four key strategies that participants used to cope with these biopsychosocial challenges: (a) family support (financial, practical and emotional support); (b) religious/spiritual support (experiencing gratitude/contentment, the power of prayer and belonging to a faith community); (c) avoidance (cognitive avoidance and distraction techniques); and (d) acceptance (positive thinking and problem solving). CONCLUSIONS: This study has provided insights into the biopsychosocial impact of ESRD and dialysis, as well as cultural and religious factors that shape the experiences and coping mechanisms of elderly ESRD patients and caregivers in Singapore, which can be used to further the development and implementation of more holistic and person-centred services to help each patient achieve a better quality of life.