Support for people with chronic kidney disease
The following projects are currently underway:
- Support for parents of children with chronic kidney disease
- Patient-important outcomes in nephrology evaluation and research (PIONEER) Project
- Adolescent experiences and perspectives following organ transplantation
- Consumer involvement in guideline development (CARI)
Support for parents of children with chronic kidney disease
Aim: The study aims to understand the intrapersonal, interpersonal and external experiences and needs of parents who have children with chronic kidney disease. More broadly, the study will examine the impact of the child's chronic kidney disease on the lives of the parents; provide insight into the common concerns and issues faced by parents, and compare parent experiences across the spectrum of chronic kidney disease.
Description: Interviews will be conducted with approximately 30 parents of children in the following stages of chronic kidney disease: predialysis (only Stage II - IV: children who will progress to dialysis and transplant) dialysis (hemodialysis, peritoneal dialysis) and transplant. The interviews will ask participants about their personal experiences of caring for their child and family, including the needs they had. Participants will be accessed through hospital departments caring for children with chronic kidney disease.
In-depth interviews will also be conducted with approximately 20 health professionals caring for children with chronic kidney disease and approximately 20 representatives of kidney-related associations. The interviews will explore respondents' perceptions about parental experiences and needs based on their own encounters with multiple parents.
Patient-important outcomes in nephrology evaluation and research (PIONEER) Project
- elicit outcomes that are important and relevant to patients on renal replacement therapy
- develop a hierarchical categorisation of the outcomes that are important to patients
- determine patients’ preferences for how patient-important outcomes should be measured in research and incorporated into routine clinical care
The project involves 3 phases:
- a combined focus group and nominal group technique to elicit outcomes that are relevant and important to patients,
- a questionnaire to develop a hierarchical categorisation of outcomes that are important to patients
- a patient consultation workshop to determine patients’ preferences for how these outcomes can be measured and incorporated in research and clinical care.
Adolescent experiences and perspectives following organ transplantation
> This project aims to examine adolescents' experiences and perceptions of their quality of life, to elicit strategies from them on ways to improve their quality of life, and to evaluate the health status and health-related quality of life in adolescents who have received a kidney transplant.
Consumer involvement in guideline development (CARI)
This project aims to develop, implement and evaluate a program of consumer involvement in the development of early stage chronic kidney disease guidelines. A series of patient consultation workshops will be held with patients diagnosed with early stage chronic kidney disease.
