Nurses’ challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study

ABSTRACT

Purpose

Being a family member to someone who has amyotrophic lateral sclerosis (ALS) is demanding and often requires sacrificing a lot. Family members can experience fatigue, anxiety, guilt and need support. The aim was to explore registered nurses’ (RNs’) experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC).

Methods

A qualitative explorative design. Interviews were conducted with RNs (n = 11) from five SPHCs in Sweden and analysed using qualitative content analysis.

Results

The results emerged in the following categories:”To support in an increasingly difficult everyday life”, based on the sub-categories: “Creating a trusting relationship”, “Balancing between the needs of patients and their families”, and “Sharing knowledge about dying to the families”;”To support in emotionally challenging situations”, based on the sub-categories: “Harbouring family members’ difficult feelings”, “Providing support even though the situation is unpleasant” and “Being able to give support by receiving confirmation and support from others”.

Conclusions

RNs working in SPHC have an important role in providing support in several ways to the families of patients with ALS, through facilitating their everyday life and giving emotional support when needed, based on the needs of both patients and the families.

KEYWORDS:

• ALS
• caregivers
• family
• home care nursing
• nurses experience
• palliative care
• relatives
• qualitative

Acknowledgments

This study was not financially supported. The authors would like to thank the RNs who participated in the study, and Simon Dyar for professional revision of the English language.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are not publicly available due to ethical restrictions.

Geolocation information

The study was conducted in central and northern Sweden, in northern Europe.

Authors contributions

AB, MA, TG and MS contributed to the study design. AB carried out the data analyses with support from TG and MA, and AB drafted the first version of the manuscript. AB, MA, TG and MS participated in interpretation of results, critically revised the manuscript for important intellectual content, contributed to successive drafts, and agreed on the final version. AB, MA, TG and MS read and approved the final manuscript.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Notes on contributors

Alexandra Beyermann

Alexandra Beyermann RN, MSc, Lecturer at the department of health, care, and social welfare the division of nursing at Mälardalen University. She has a specialist nursing degree and master’s degree in nursing science in palliative care. Her research interest concerns palliative care and mainly the problems surrounding ALS - from the perspective of both the patient, relatives and the nurse. Within the nursing programme, she teaches care science, scientific method and is responsible for students in practical training in somatic and municipal care. Within the Specialist nursing program in Home Health Care, she teaches palliative care. As a registered nurse, she has mainly worked with palliative home health care, and has been a member of Sörmland, Sweden, palliative care council.

Margareta Asp

Margareta Asp RN, PhD, Professor at the department of health, care, and social welfare- the division of nursing at Mälardalen University. She is a member of Nordic College of Caring Science, where she has been a chairperson during a period. Her major research interest is health and recovery for individuals in different life situations. A central phenomenon is Rest, which she has studied in different settings, based on a life world perspective. Concept development is very relevant for caring science as discipline, and for that reason, she has developed a model for concept development based on life world theory. Another research area is nursing students’ and nurses’ learning and competence development. As supervisor of several doctoral project, she has also studied Health Ageing in Thailand and has cooperations with researchers in Thailand. Further project concerning participation as a concept, and what it means to live with heart failure and recovery from critical illness. She has a university degree as nurse teacher and assessed as an Excellent teacher in the career stage, and has taught in courses on basic- advanced- and doctoral levels and have experiences as director of studies of the nursing programme and the doctoral education.

Tove Godskesen

Tove Godskesen RN, PhD, lecturer, and docent in health sciences with a specialization in health ethics and medical ethics. Her research takes its starting point in ethical issues with a clear clinical perspective as well as issues related to the integrity of research. The common thread in her research concerns ethical issues and challenges in care and research with a particular focus on ethical concepts such as vulnerability, dignity, integrity, and autonomy. A particular area of interest is ethical questions in clinical pharmaceutical research, and another area of focus is ethical issues and challenges related to end-of-life care, in intensive care, organ transplant care and in nursing homes, as well as people with reduced autonomy. Godskesen also has an interest in the integrity of research and especially publication ethics. In recent times, healthcare has strived to be evidence-based (so-called evidence-based medicine and evidence-based nursing). This rests on the research being based on the best possible foundation. She mainly teaches care ethics, medical ethics, and research ethics in the nursing education as well as in the specialist education in palliative care, psychiatric care and primary care, as well as in the postgraduate education at the university.

Mirkka Söderman

Mirkka Söderman RN, PhD, Senior Lecturer at the department of health, care, and social welfare- the division of nursing at Mälardalen University. She has experience of research in the field of cancer, insurance medicine and several research projects in the field of home health care. For instance: a research projects of the “Respite care today and in the future” - focusing on older persons and their close relatives, “HOME-project” - focusing on opportunities for remaining in ordinary housing in case of increased need for care, IHR-reablement follow up - focusing on intensive home rehabilitation for older persons, and Person-centred care from non-Swedish-speaking elderly with dementia, relatives, and care staff perspectives. Dr Söderman is a member in the research group Care, Health, and Recovery at MDU. At MDU she teaches in the nursing program and master programmes and is responsible for the Specialist nursing program in Primary Health Care. She is a specialist nurse in oncological care and has mainly worked with palliative home health care.