The emotional experiences of family carers in Huntington disease

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.

Comportamento, competência social e qualidade de vida na Doença de Huntington

“…Using the data obtained from the Behavioral Inventory, it was observed that the SG when compared to the CG showed statistically significant differences in internalizing factors (Table 1, Figure 2) and total problems (Table 1; Figure 4), suggesting that the behavioral profile with changes involves not only the individual but also the environment where he is inserted, consequently showing losses in his social relation [11][12][13][14] .…”

“…Therefore, the DH impairs the mental health of individuals and may be observed suffering and emotional stress among family throughout the course of the disease 13,14 .…”

Caring with confidence for Huntington's disease

“…Many individuals with HD are cared for by informal carers, usually family members, who may themselves be at risk of inheriting the disease and/or have children who are at-risk of HD. The burden of providing emotional and practical support can be costly in terms of the carer's own mental and physical health (Williams et al, 2009). With the onset of HD occurring in mid-adulthood, there may be particular challenges that HD carers face through being at a life-stage where they are managing a career and looking after children (Aubeeluck and Moskowitz, 2008;Rolland and Williams, 2005;Williams et al, 2009).…”

“…The burden of providing emotional and practical support can be costly in terms of the carer's own mental and physical health (Williams et al, 2009). With the onset of HD occurring in mid-adulthood, there may be particular challenges that HD carers face through being at a life-stage where they are managing a career and looking after children (Aubeeluck and Moskowitz, 2008;Rolland and Williams, 2005;Williams et al, 2009). This can result in serious financial implications for HD families where the carer may have to end their job mid-career, potentially creating further stress.…”

Being a Next of Kin—Experiences of Burden and Quality of Life

“…Being a next of kin was described as experiencing disintegration of one's life. Spouses were distressed by the loss of the relationship with their spouse as an intimate partner [13]. Next of kin to young adults with multiple sclerosis experienced caregiver burden, i.e., physical, psychological, emotional, social, and economic stressors.…”