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Talk Description
Aims
To understand the lived experience of frailty in the advanced chronic kidney disease (CKD) context and how this impacts interactions with healthcare providers and medical decision-making.
Background
Frailty has been characterised as a state of accelerated aging with increased vulnerability to adverse outcomes and non-routine recovery. The lived experience of individuals with CKD and frailty have yet to be examined.
Methods
Participants with advanced CKD and Fried Frailty phenotype and their caregivers were invited to participate in in-depth interviews or focus group workshops to gain a rich description of key informants’ experiences of frailty. Interviews were recorded, transcribed and coded for meaningful concepts and analysed using inductive thematic analysis using a constant comparative method of data analysis employing Social Cognitive Theory.
Results
Two focus groups( N=4, N=2), seven individual interviews and three caregiver interviews were analysed prior to saturation of themes. Experiences of frailty were described across four domains: the self, the body, the mind and impact on relationships; yielding themes of: the normative influence of capacity, the defining feature of reliance on help (personal or equipment), the dynamic state of frailty, erosion of identity, unresolved symptom burden, non-routine recovery, contracted social sphere, the mind-body continuum, and proximity to death. Experiences of frailty were punctuated by falls, comorbidity and prolonged hospitalisations.
Conclusions
Frailty is a pejorative, personal, subjective experience defined by deterioration from a previous normative baseline and reliance on aids and carers. Patients and their carers strive to maintain the status quo. The dynamic state of frailty needs to be considered in decision-making and future planning.
Alice L Kennard1,2, Suzanne Rainsford1, Kelly Hamilton2, Nicholas Glasgow1, Kate Pumpa3,4, Angela Douglas4, Girish S Talaulikar1,2
1. College of Health and Medicine, The Australian National University, 2601
2. Department of Renal Medicine, Canberra Health Services, Garran, 2605
3. School of Public Health, Physiotherapy and Sports Science, University College Dublin, Ireland
4. Discipline of Sport and Exercise Science, Faculty of Health, University of Canberra, 2617