Exploration of caregiver experiences of conservatively managed end-stage kidney disease to inform development of a psychosocial intervention: the ACORN Study

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.

Aim of the study

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.

Study type

Qualitative study (semi-structured interviews and focus groups)

Who is able to participate?

People over the age of 18 who provide, or has provided, informal care to a person who has end-stage kidney disease and is receiving conservative management (also known as supportive care).

We are recruiting people who are currently informal carers, or who were previously carers but their loved one has died in the past 2-24 months.

Where is the study happening?

The study is currently running in the Northern and Western Health and Social Care Trusts in Northern Ireland, and the Royal London Hospital in Whitechapel. However, we welcome recruits from anywhere in Northern Ireland or England.

Open and close dates of recruitment

September 2022 until March 2024

How do I get involved

Contact Claire Carswell at [email protected] or Gladys Laurente at [email protected]

Summary

Kidney failure can impact significantly on the mental and physical health of both patients and their informal carers. Treatment options include kidney replacement therapies such as transplant or dialysis, however people who are frail, elderly and who have multiple conditions may not live any longer if they choose to have dialysis. An alternative option to

is conservative management (CM), where patients choose not to have dialysis, instead focusing on a palliative approach to care where symptom management, psychosocial and spiritual support are the priorities.

Patients who choose conservative management often receive most of their care from informal carers such as family and friends. Therefore, informal carers of patients with kidney failure who are receiving conservative management may have their own support needs that must be addressed. However, we don’t know much about the experiences and opinions of informal carers of patients receiving conservative management, particularly when their loved one is approach the end of life. As a result, we don’t know what support they need and how it should be provided.

Therefore, the aim of the ACORN study is to explore the experiences of informal carers by carrying out semi-structured interviews across Northern Ireland and England. We will also carry out focus groups with both renal healthcare professionals and informal carers. Towards the end of the study we will hold national workshops where key stakeholders will contribute to the development of a psychosocial intervention, which will ultimately aim to support the needs of informal carers.

Has this study received ethical approval? Please provide REC number.

Ethical approval has been obtained, reference: 22/EE/0089

Lead investigators

Professor Helen Noble, Queen’s University Belfast

Who is funding the study?

Marie Curie Research Grants

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