Although patient and caregiver engagement in research is commonly encouraged as a way to increase the relevance and acceptance of study findings, obstacles and ambiguities persisted. For a study, researchers sought to summarize the experiences and views of patients and caregivers who had previously participated in research in order to develop methods to increase patient participation in research. Semi-Structured interviews were done with 23 adult patients with CKD and carers from Australia, the United States, the United Kingdom, and Denmark who had previously participated in the research. Thematic analysis of transcripts was performed.
They identified 6 themes: coping with CKD diagnosis (overwhelmed by the burden of illness, silenced by stigma and shame, lack of advocacy, and awareness), taking responsibility for involvement (autonomy in their own care, forced to be proactive to access opportunities, infrastructural support to connect researchers and patients), battling big agendas (struggling in a system of disincentives, changing research culture, becoming equals), seeing the person behind the disease (overwhelmed by the burden (links to important stakeholders, drivers of innovation, responsibility to end-users).
Meaningful participation in research was hampered by the burden of CKD, restricted chances, and power asymmetry between patients/caregivers and researchers. Building trust, raising knowledge of opportunities, and acknowledging the breadth of expertise and worth of patients/carers, both inside and beyond their medical experience, might help patients and caregivers participate more fully in CKD research.
Reference:cjasn.asnjournals.org/content/17/2/215
