Patient perspectives and preferences for rehabilitation among people living with frailty and chronic kidney disease: a qualitative evaluation

Alice L Kennard; Suzanne Rainsford; Kelly L Hamilton; Nicholas J Glasgow; Kate L Pumpa; Angela M Douglas; Girish S Talaulikar

doi:10.1186/s12882-024-03740-6

Patient perspectives and preferences for rehabilitation among people living with frailty and chronic kidney disease: a qualitative evaluation

BMC Nephrol. 2024 Sep 13;25(1):304. doi: 10.1186/s12882-024-03740-6.

Authors

Alice L Kennard^{1

2}, Suzanne Rainsford³, Kelly L Hamilton⁴, Nicholas J Glasgow³, Kate L Pumpa^{5

6}, Angela M Douglas⁶, Girish S Talaulikar^{3

4}

Affiliations

¹ College of Health and Medicine, Australian National University, Canberra, Australia. alice.kennard@act.gov.au.
² Department of Renal Medicine, Canberra Health Services, Building 15, Yamba Drive, Garran, Canberra, ACT, 2605, Australia. alice.kennard@act.gov.au.
³ College of Health and Medicine, Australian National University, Canberra, Australia.
⁴ Department of Renal Medicine, Canberra Health Services, Building 15, Yamba Drive, Garran, Canberra, ACT, 2605, Australia.
⁵ School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland.
⁶ Discipline of Sport and Exercise Science, Faculty of Health, University of Canberra, Canberra, Australia.

Abstract

Background: Understanding the patient perspective of frailty is critical to offering holistic patient-centred care. Rehabilitation strategies for patients with advanced chronic kidney disease (CKD) and frailty are limited in their ability to overcome patient-perceived barriers to participation, resulting in high rates of drop-out and non-adherence. The aim of this study was to explore patient perspectives and preferences regarding experiences with rehabilitation to inform a CKD/Frailty rehabilitation model.

Methods: This qualitative study involved two focus groups, six individual semi-structured interviews and three caregiver semi-structured interviews with lived experience of advanced kidney disease and frailty. Interviews were recorded, transcribed, and coded for meaningful concepts and analysed using inductive thematic analysis using constant comparative method of data analysis employing Social Cognitive Theory.

Results: Six major themes emerged including accommodating frailty is an act of resilience, exercise is endorsed for rehabilitation but existing programs have failed to meet end-users' needs. Rehabilitation goals were framed around return to normative behaviours and rehabilitation should have a social dimension, offering understanding for "people like us". Participants reported on barriers and disruptors to frailty rehabilitation in the CKD context. Participants valued peer-to-peer education, the camaraderie of socialisation and the benefit of feedback for maintaining motivation. Patients undertaking dialysis described the commodity of time and the burden of unresolved symptoms as barriers to participation. Participants reported difficulty envisioning strategies for frailty rehabilitation, maintaining a focus on the immediate and avoidance of future uncertainty.

Conclusions: Frailty rehabilitation efforts in CKD should leverage shared experiences, address comorbidity and symptom burden and focus on goals with normative value.

Keywords: Dialysis; Frailty; Kidney disease; Qualitative; Rehabilitation.

MeSH terms

Aged
Aged, 80 and over
Female
Focus Groups*
Frailty* / psychology
Frailty* / rehabilitation
Humans
Male
Middle Aged
Patient Preference*
Qualitative Research*
Renal Insufficiency, Chronic* / psychology
Renal Insufficiency, Chronic* / rehabilitation