Exploration of Caregiver experiences of conservatively managed end-stage kidney disease to inform development of a psychosocial intervention

This research aims to develop an understanding of the experiences of informal caregivers of people who have end-stage kidney disease and are receiving conservative management, to inform the development of a psychosocial intervention to address unmet needs.

Introduction

The aim of the ACORN study is to understand the experiences of informal carers of people who have end-stage kidney disease and are receiving conservative management.

People with end-stage kidney disease who do not go on to receive dialysis or a kidney transplant, an approach to care known as conservative management, can experience difficult physical, social and psychological consequences of the disease. Many of these people receive informal care and support from family and friends. Informal carers can also experience consequences of the disease, but there is little support available for them within the current healthcare system.

The ACORN team is working in partnership with carers, people with end-stage kidney disease, and healthcare professionals to better understand the experiences of informal carers and develop an intervention to support their psychological and social wellbeing.

The research project aims to explore the experiences of informal caregivers (e.g. partners, spouses, family, friends) of people with end-stage kidney disease who have chosen not to receive dialysis or transplantation (an approach called ‘conservative management’).

The ACORN Study is a research project taking place across Northern Ireland and the UK, based at the School of Nursing and Midwifery at Queen’s University Belfast, funded by Marie Curie Research Grants

Animation

Share with friends

meet the acorn team

Helen Noble

Dr Helen Noble | Reader and Director of Postgraduate Studies | School of Nursing & Midwifery | EDTNA/ERCA Chair of Research.

Claire Carswell

BSc, RMN, PhD

Dr Claire Carswell is a registered mental health nurse and research fellow at the School of Nursing and Midwifery at Queen’s University Belfast.

Magdi Yaqoob

Professor Magdi Yaqoob, MD, FRCP. Academic Director and consultant nephrologist Renal Unit Barts Health NHS Trust. Head of Renal Research Lab, Translational Medicine and Therapeutics, William Harvey Research Unit, Queen Mary University of London.

Clare Mc Veigh

RN BSc MSc PhD FHEA

Lecturer (Education) and Academic Lead for Practice at the School of Nursing and Midwifery, Queen’s University Belfast.

Joanne Reid

Director of Research |Chair of Cancer and Palliative Care |School of Nursing and Midwifery |Chair of the Palliative Care Research Network, All Ireland Institute of Hospice and Palliative Care.

Ian Walsh

Ian Walsh MD, MSc FRCSUrol, FRCS(Glasg), FRCSI, SFHEA, FRSA is a Urologist and Clinical Academic at Kingsbridge Healthcare Group, Queen’s University of Belfast and Institute of Psychosexual Medicine. He is active in the arenas of Arts in Health, Medical Humanities and Healthcare Human Factors.

Clare Mckeaveney

BSc, Ph.D, MBPsS, CPsychol, AFHEA

Dr Clare McKeaveney is a Lecturer (Teaching and Research) at the School of Nursing and Midwifery, Queen’s University Belfast. She is an experienced quantitative and qualitative researcher with a focus on renal disease.

Gladys Laurente

Bachelor of Science in Nursing- Nursing and Midwifery Council (NMC) registered nurse (BSN RN) | Renal Clinical Nurse Specialist (Barts Health NHS Trust- Royal London Hospital site) | Research Assistant (Queen’s University Belfast).

Ying Kuan

Consultant nephrologist at the Western Health and Social Care Trust.

Patricia Gilbert

Co-Chair of the Northern Ireland Kidney Patient Association.

Soham Rej

Geriatric Psychiatrist and Assistant Professor at the Jewish General Hospital, McGill University, Montreal, Canada.

Karen McGuigan

Dr Karen McGuigan is a Research Fellow in School of Nursing and Midwifery atQueen’s University Belfast. Karen is a Chartered Psychologist with specialisedinterest in the development and evaluation of interventions aimed at improving healthoutcomesfor patients, service users, carers and their families.

Andrena Christie

Christie is a final year adult nursing student at the School of Nursing and Midwifery at Queen’s University, Belfast and student intern on this project.

The research team consists of both national and international collaborators, including research team members from the Northern Ireland Kidney Patient Association, the Royal London Hospital, the Western Health and Social Care Trust and McGill University.