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Family Caregivers’ Satisfaction With Specialized End-of-Life Care Provided at Home

Assessment of the Psychometric Characteristics of the Icelandic Version of the Family Assessment of Treatment at the End of Life Questionnaire

Hjörleifsdóttir, Elísabet PhD; Einarsdóttir, Audur MSc, RN; Óskarsson, Gudmundur Kristján Cand. Scient. Oecon; Frímannsson, Gudmundur Heidar PhD

Journal of Hospice & Palliative Nursing: October 2019 - Volume 21 - Issue 5 - p 412–421
doi: 10.1097/NJH.0000000000000583
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Several studies have highlighted the significant role of families in end-of-life care. Carers’ well-being may depend on how they experience the care and support provided to their loved ones. This study was conducted to investigate family caregivers’ assessment of specialized end-of-life care in a sample of 119 close family members in Iceland. The response rate was 58.8% (n = 70). Furthermore, the aim was to assess the psychometric characteristics of the Icelandic version of Family Assessment of Treatment at the End of Life (FATE). Descriptive statistics were used to describe the characteristics of the data. Results indicate that good communication and understanding of all parties concerned are the foundation for family caregivers’ satisfaction with end-of-life care. Participants were generally satisfied with the care provided, whereas some important aspects of care were rated as excellent. Evaluation of management of symptoms reported in this study should be given specific attention in future studies considering its unsatisfactory outcomes. Nurses need to be aware of the impact that physical suffering of the patient might have on the family caregivers. The Icelandic version of the Family Assessment of Treatment at the End of Life instrument is a psychometrically sound instrument useful for measuring caregivers’ satisfaction with service provided at the end of life, although modifications would improve the instrument for use on this population.

Elísabet Hjörleifsdóttir, PhD, is clinical nurse specialist in cancer and palliative nursing and associate professor, Department of Health Sciences, University of Akureyri, Iceland.

Audur Einarsdóttir, MSc, RN, is palliative nurse, Hvammstangi Community Hospital, Iceland

Gudmundur Kristján Óskarsson, Cand. Scient. Oecon, is associate professor, Faculty of Business Administration, University of Akureyri, Iceland.

Gudmundur Heidar Frímannsson, PhD, is professor, Department of Education, University of Akureyri, Iceland.

Address correspondence to Elísabet Hjörleifsdóttir, PhD, School of Health Sciences, University of Akureyri, Norðurslóð, 600 Akureyri, Iceland (elisabet@unak.is).

The authors have no conflicts of interest to disclose.

Online date: June 19, 2019

© 2019 by The Hospice and Palliative Nurses Association.