Patient Participation in Kidney Care : Patients’ and professionals’ perspectives

Abstract

When I was a teenager, a close relative of mine became seriously ill and passed away within a few months of fighting her illness. Looking back, I remember how important it was for us -her next of kin -to ensure that her needs and preferences were taken into consideration by the healthcare professionals. Later, as a registered nurse, and subsequently a midwife, I have maintained the ideal to recognise the patient as a person, acknowledge their individual situations, and help them to make their voices heard. In 2018, I had the opportunity to become a research assistant in the pilot project on patient participation that eventually became part of my thesis. The project addressed individuals undergoing treatment with haemodialysis, and I noted the many similarities between obstetric care and care for persons with long-term conditions. In both contexts, mutual relationships and exchange of knowledge and information between patients and healthcare professionals are essential. What appealed to me was the prospect of engaging in research that could make a difference. The research project addressed a gap that I recognised from everyday practice, where patients and healthcare professionals seldom talk about or engage in discussions about their conceptualisation of patient participation. How do they then understand its significance and the factors that either enable or hinder patient participation? Does participation align with the individual needs and preferences of patients? Is patient participation really facilitated? Despite the long-standing recognition of its significance, there is still much to learn about patient participation. As a researcher and healthcare professional, I hope to promote a coproduced approach to patient participation, wherein the perspectives of patients themselves are actively integrated and valued.