Title

The emotional experiences of family carers in Huntington disease

Document Type

Article

Peer Reviewed

1

Publication Date

4-1-2009

Journal, Book or Conference Title

Journal of advanced nursing

NLM Title Abbreviation

J Adv Nurs

PubMed ID

19228233

Abstract

AIM: This paper is a report of a study conducted to examine the emotional experience of caregiving by family carers of people with Huntington disease and to describe strategies they used to deal with that experience. BACKGROUND: Huntington disease, commonly diagnosed in young to middle adulthood, is an inherited single gene disorder involving loss of cognitive, motor and neuropsychiatric function. Many family members become caregivers as well as continuing as parents and wage earners. The emotional aspects of caregiving contribute to mental health risks for family members. METHODS: Focus groups were conducted with 42 adult carers of people with Huntington disease in four United States and two Canadian Huntington disease centers between 2001 and 2005. Data were analyzed through descriptive coding and thematic analysis. FINDINGS: All participants reported multiple aspects of emotional distress. Being a carer was described as experiencing disintegration of one's life. Carers attempted to cope by seeking comfort from selected family members, anticipating the time when the care recipient had died and/or using prescription medications. Spousal carers were distressed by the loss of their relationship with their spouse and dealt with this by no longer regarding the person as an intimate partner. Carers were concerned about the disease risk for children in their families and hoped for a cure. CONCLUSION: Emotional distress can compromise the well-being of family carers, who attempt to maintain multiple roles. Nurses should monitor carer mental health, identify sources of emotional distress and support effective strategies used by carers to mediate distress.

Keywords

Caregivers -- Psychosocial Factors, Family -- Psychosocial Factors, Huntington's Disease, Stress, Psychological, Adaptation, Psychological, Adult, Aged, Audiorecording, Canada, Coping, Descriptive Statistics, Female, Focus Groups, Funding Source, Grounded Theory, Male, Middle Age, Mothers, Purposive Sample, Spouses, Thematic Analysis, United States, Human

Published Article/Book Citation

The definitive version was published in Journal of advanced nursing, 65:4 (2009) pp.789-798.

Recommended Citation

Journal of advanced nursing. 2009 Apr;65(4):789-798.

This document is currently not available here.

Share

COinS
 

URL

http://ir.uiowa.edu/nursing_pubs/53