Abstract
BACKGROUND: Quality of life of patients receiving dialysis has been rated as poor. OBJECTIVE: To synthesize the views of Canadian patients on or nearing dialysis, and those who care for them. DESIGN: Secondary analysis of a survey, distributed through dialysis centres, social media and the Kidney Foundation of Canada. SETTING: Pan-Canadian convenience sample. PARTICIPANTS: Patients, their caregivers and health-care providers. MEASUREMENTS: Text responses to open-ended questions on topics relevant to end-stage renal disease. METHODS: Statements related to needs, beliefs or feelings were identified, and were analysed by thematic content analysis. RESULTS: A total of 544 relevant statements from 189 respondents were included for the thematic content analysis. Four descriptive themes were identified through the content analysis: gaining knowledge, maintaining quality of life, sustaining psychosocial wellbeing and ensuring appropriate care. Respondents primarily identified a need for more information, better communication, increased psychosocial and financial support for patients and their families and a strong desire to maintain their previous lifestyle. LIMITATIONS: Convenience sample; questions were originally asked with a different intent (to identify patient-important research issues). CONCLUSIONS: Patients on or nearing dialysis and their caregivers identified four major themes, gaining knowledge, maintaining quality of life, sustaining psychosocial wellbeing and ensuring appropriate care, several of which could be addressed by the health care system without requiring significant resources. These include the development of patient materials and resources, or sharing of existing resources across Canadian renal programs, along with adopting better communication strategies. Other concerns, such as the need for increased psychosocial and financial support, require consideration by health care funders.