Understanding the role of patient and public involvement in renal dietetic research

Abstract

The objective was to consult patients on a proposed recruitment strategy to a patient and public involvement exercise. We wanted to explore the reasoning and willingness of patients to become co-researchers within a grant application. Eighteen people using the renal health service informed the consultation by action research so that their experiences could be used to guide the overall methodology. Twelve people took part in semi-structured interviews. NVIVO 10 and Framework Analysis were used to interpret emerging themes from the data. The recruitment strategy, informed by research expertise, became an experience-based expert design. The design took into account the limitations of attendance, the informational and physical needs of these service users. Service users wanted to share their experiences with people who would listen and were in a position to help make the changes. This gave them a sense of purpose and autonomy in their treatment and helped them cope with living with renal disease in society. However, feelings of doubt as to whether they could personally 'make a difference' as a co-researcher, were common. Consulting service users enabled the research team to recruit more people to interviews to explore motivation considering the unique personal and social needs of this service user group. Service users may need additional and continued support if they are to successfully take part in a clinical study research advisory group.

Behavioural strategies to self‐manage low‐potassium diets in chronic kidney disease

“…Purposeful sampling was used to recruit individuals undergoing haemodialysis as per a patient and public involvement exercise undertaken before this study (Morris et al, 2017). Inclusion criteria were, over 18‐years‐old, prescribed a low‐potassium diet, and able to converse in English.…”

Pushing the boundaries of patient experience

“…This opportunity is represented in the personal narrative by Matz 3 as he reflects in what would have made a difference for him in his own healthcare journey and where he acknowledges the accountability both providers and patients themselves have in experience overall. We also see how involvement can begin to impact outcomes from Kemp et al 4 and explore processes by which we can be more effective at application and results from both Morris 5 and Marshall 6 and their co-authors. We then have the chance to dig deeper into the processes of co-design itself from both Maher 7 and Fucile 8 and their co-authors, which is perhaps one of the greatest examples of moving beyond principles of centeredness or practices of engagement to truly involving people in the process as co-owners, as expert contributors and as team members who have a sense of control and even power in leading to better outcomes.…”

Experiences of the Dietary Management of Serum Potassium in Chronic Kidney Disease: Interviews With UK Adults on Maintenance Hemodialysis

“…Adults attending for haemodialysis were consulted as part of a pre-planned patient and public involvement exercise (PPI) to inform the study design (8). Views on participant recruitment, interview topics and data collection methods were sought.…”