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The emotional experiences of family carers in Huntington disease |
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| Authors: | Janet K. Williams,Heather Skirton,Jane S. Paulsen,Toni Tripp-Reimer,Lori Jarmon,Meghan McGonigal Kenney,Emily Birrer,Bonnie L. Hennig,& Joann Honeyford |
| Affiliation: | Janet K. Williams PhD RN FAAN Kelting Professor of Nursing College of Nursing, The University of Iowa, USA; Heather Skirton PhD RN Registered Genetic Counsellor and Professor of Applied Health Genetics Deputy Head (for Research) of the School of Nursing and Community Studies University of Plymouth, UK; Jane S. Paulsen PhD Professor of Psychiatry, Neurology, Psychology and Neurosciences Departments of Neurology, Psychiatry, Psychology, and Neurosciences, The University of Iowa, USA; Toni Tripp-Reimer PhD RN FAAN Professor and Associate Dean for Research Co-Director, John A. Hartford Centre for Gerontologic Nursing Excellence, The University of Iowa, USA; Lori Jarmon MS Former Program Associate College of Nursing, The University of Iowa, USA; Meghan McGonigal Kenney MSN RN PhD Candidate College of Nursing, The University of Iowa, USA; Emily Birrer BSN RN Research Assistant College of Nursing, The University of Iowa, USA; Bonnie L. Hennig MSW LCSW Clinical Therapist Huntington Disease Program, University of Connecticut Health Center, USA; Joann Honeyford BScN RN Manager in Clinical Genetics North York General Hospital, Toronto, ON, Canada |
| Abstract: | Title. The emotional experiences of family carers in Huntington disease. 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: | caregiving focus groups Huntington disease psychological impact qualitative research report |