Development of a psychosocial intervention to support informal caregivers of people with end-stage kidney disease receiving haemodialysis

Michael Matthews,Robert Mullan,Helen Noble,Joanne Reid,Christopher Hill,Clare Mckeaveney,Stephanie Bolton

doi:10.1186/s12882-020-02075-2

Abstract

BackgroundPatients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role.MethodsThis qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention.DiscussionThe needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers’ preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.

Highlights

Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease
Chronic kidney disease progresses along a five-stage trajectory, stage 5 is termed End Stage Kidney Disease (ESKD) [2] and occurs when the glomerular filtration rate of the kidney is less than 15 ml/min, requiring haemodialysis, peritoneal dialysis or transplantation [3]
The support offered by informal carers who are generally family members, friends or neighbours, is an important role in helping patients with end-stage kidney disease, receiving renal replacement therapy to adjust to the illness and to increase adherence to treatment regimens [12]

Summary

Introduction

Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may impact the experience of the patients for whom they care The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role. Despite technical advances and changes in the way haemodialysis is delivered, it remains a challenging, arduous treatment for many patients and impacts negatively on the lives of their informal carers [4]

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Discussion

Conclusion