Abstract
Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs. Aim: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi-structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers.
Highlights
End-stage kidney disease (ESKD) is an all-consuming condition that significantly impacts the physical and psychological wellbeing of both patients and their informal carers [1,2,3]
This study will consist of three stages and will follow the Medical Research Council’s (MRC) framework, phase 1 of developing and evaluating complex interventions [17]
The support needs of informal carers of patients with ESKD receiving conservative management (CM) are largely unknown
Summary
End-stage kidney disease (ESKD) is an all-consuming condition that significantly impacts the physical and psychological wellbeing of both patients and their informal carers [1,2,3]. Patients who opt for CM frequently present with multiple co-morbid conditions, experience a high symptom burden, and have a limited life expectancy and significant unmet palliative care needs [4]. They may experience a feeling of abandonment by their healthcare team when they choose not to dialyse, underpinned by prognostic uncertainty [5]. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, as the patient nears the end of life.
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