Huntington disease: families’ experiences of healthcare services

Abstract

Aim This paper is a report of a study of the perceptions of family caregivers regarding the availability and adequacy of health and social care services for their family member with Huntington disease, and to compare findings from these reports in United Kingdom and United States of America samples. Background Huntington disease is an inherited neurodegenerative condition. Family members often take responsibility for care of relatives with long-term conditions. Studies have demonstrated there are both positive and negative outcomes for carers. Methods During 2006 and 2007, respondents from the United Kingdom (n = 108) and the United States (n = 119) who were caring for a relative affected with Huntington disease completed the Community Health Care Services Scale to identify areas of concern and the extent to which specific issues bothered carers. Data were analysed using statistical tests including chi-square, t-tests and factor analysis. Results were compared between carers in the two cohorts. Results Three main factors were derived: ‘community resources’, ‘individualized care’ and ‘knowledge of Huntington disease’. Carers had concerns about the knowledge of healthcare professionals providing care and thought that there were insufficient services to support them and the affected person. There were different challenges for carers when the affected person had a long-term neurodegenerative condition because these carers were also likely to have responsibilities for earning and caring for children. Conclusion Comprehensive facilities and resources are needed to support families affected by long-term complex conditions. Healthcare professionals need to be aware of the health needs of carers as well as those of the affected person.

Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature

“…Self-reported quality of life among caregivers of individuals with HD is similar to that of patients 18. The reasons for this significant impact on caregivers may reflect the fact that family caregivers provide the majority of skilled care for individuals with HD; are in the unique position of having to worry about the risk of illness on future generations; are children of the affected patient, not emotionally equipped to take on this role reversal; may lack the knowledge necessary to navigate a complicated disease process; and that HD affects patients in their prime of life, causing significant financial strain and a drastic adjustment in family dynamics, lifestyle, and expectations 25–27. Despite these challenges, caregivers willingly take on these roles with the relentless and often unexpected demands having a significant impact on caregiver quality of life 17…”

Caring with confidence for Huntington's disease

“…Despite numerous recommendations for increased and tailored HD carer support (Skirton et al, 2010;Dawson et al, 2004;Soltysiak et al, 2008;Williams et al, 2012;Hartelius et al, 2010), there is a paucity of research describing specific interventions for HD carers and evaluation studies of such interventions. One paper identified that an HD day service was felt to be supportive to carers, promote their well-being and allow respite for them (Soltysiak et al, 2008).…”

“…The rarity of the disease can result in HD families not always having access to specialist HD healthcare providers. In a survey of HD carers in the UK and USA, it was found that there were concerns about the extent of knowledge among healthcare staff and that more support services were required for HD families (Skirton et al, 2010). The lack of understanding about HD among medical professionals was reported to be a major stress for carers of HD patients (Roscoe et al, 2009).…”

Care of patients with Huntington's disease in South America: a survey

“…Moreover, in the latter stages of disease, nursing home facilities and end-stage palliative care are often required, as caregiver burden and quality of life become major concerns 5 .…”