Short summary

This project develop and implement knowledge about nurses' care for patients and their families who experience grief that is linked to loss due to critical illness and/or death. The aim is to promote nurses' skills in providing care in situations of loss and grief, thus contributing to the mental health and well-being of patients and their families. This part of the study is target patients in haemodialysis and their families.

Rationale

Background:

It is estimated that about 10-15% of the Danish population (total: 5.8 million) have a chronic kidney disease, of which more than 2,600 patients are treated with dialysis. The mortality rate for dialysis patients is high - around 20% die each year. Two thirds of Danish dialysis patients are over 65 years of age and often have adult children. Patients with chronic kidney disease and early dialysis have a sense of a "lost life" and overwhelming emotions, in the form of shock and sadness. The experience of loss in patients' lives while undergoing long-term treatment with dialysis is a major cause of mental health problems, such as depression. Dialysis patients' families need and ask for family support. National research has found that loss experiences in families with relatives who are on dialysis relate to the limitations of the disease and treatment, including time-consuming haemodialysis treatment, which affects their everyday lives. Thus, experiences of loss and grief are often present in chronic kidney disease patients and the life world of their families.

Aim of the project

The aim of the project is to uncover, develop and implement knowledge about nurses' care for patients and their families who experience grief that is linked to loss due to critical illness and/or death. The aim is to promote nurses' skills in providing care in situations of loss and grief, thus contributing to the mental health and well-being of patients and their families.

The aim will be achieved in 3 sub-studies

Sub-study 1: The aim of sub-study 1 is: to develop knowledge about nurses' care in situations of loss and grief - care that addresses experiences of loss and grief and the needs of patients on haemodialysis and their families. This is with a view to augmenting skills to provide care to these patients and families, with the goal of contributing to their mental health and well-being during the course of the disease, in situations of critical illness and possible death.

Description of the cohort

The aim will be achieved in 3 sub-studies

Sub-study 1 The aim of sub-study 1 is: to develop knowledge about nurses' care in situations of loss and grief - care that addresses experiences of loss and grief and the needs of patients on haemodialysis and their families. This is with a view to augmenting skills to provide care to these patients and families, with the goal of contributing to their mental health and well-being during the course of the disease, in situations of critical illness and possible death.

Sub-study 1 seeks answers to the following three research questions:

1. How do nurses experience loss and grief among patients on haemodialysis and their families, respectively? What impact do those experiences have on nursing care targeted to mental health for the patient and family experiencing critical chronic illness and possible death?

2. How do patients describe their experiences of loss and grief associated with chronic illness and haemodialysis, and how does the patient consider that loss and grief impact the family's mental health and need for care? 3. How do family members of patients on haemodialysis describe their experiences of loss and grief in their lives with a family member on lifelong haemodialysis, and what impact do their experiences have on the family's mental health and care needs?

Method

The project takes a phenomenological-hermeneutic approach. The methodology is thus qualitative. Semi-structured individual interviews will be conducted with nurses, patients and family members to uncover knowledge. The qualitative data will be processed in NVivo and the analysis and interpretation are inspired by Ricoeur's interpretation approach, i.e.: Naïve reading, structural analysis and interpretation and discussion.

Participants

The study includes: 12 nurses from selected haemodialysis departments in South Denmark Region, who have at least two years of experience of the specialism; approximately six patients on lifelong haemodialysis and not on the waiting list for kidney transplantation; and six relatives of patients who are on lifelong haemodialysis.

Sub-studies 2 and 3:

Sub-study 2: The project's empirical evidence from interviews, together with other research on loss and grief, will contribute to this sub-study, which focuses on the development of a nursing intervention, which can be implemented in nurse educational programme and in clinical nursing.

Sub-study 3: The nursing intervention developed in sub-study 3 will be implemented and evaluated in the foundational educational programme and in clinical practice. The aim is to promote nurses' skills to provide care in situations of loss and grief among chronic kidney disease patients on haemodialysis and families, thus contributing to the mental health and well-being of patients and their families.

Method in sub-studies 2 and 3 The development of the intervention will be inspired by the "Developing and evaluating complex interventions" theory developed by the British Medical Research Council (MRC). According to the MRC, the development of complex interventions consists of several phases, including: uncovering existing knowledge about the intervention; inclusion of relevant theory; pilot test of the intervention; and continuous evaluation and adjustment of the intervention.

Data and biological material

Interviews

Collaborating researchers and departments

Department of Nephrology (Y), OUH, Svendborg & Odense

• Lecturer, PhD Hanne Agerskov

School of Nursing and Midwifery, Griffith University

• Professor Ann Bonner, RN, PhD Head of

Faculty of Nursing Health Science Research Center University College Lillebælt

• PhD, Lecturer in Nursing Rikke Madsen
• Professor, Head of Health Science Research Center Per Kjær
• PhD, Palle Larsen