Family carer personal concerns in Huntington disease

Abstract

Aim To examine and compare the personal concerns of family members providing care for people with Huntington disease in the United Kingdom and the United States. Background Family caregivers of people with Huntington disease may feel burdened by caregiving responsibilities and concerned about illness risk for relatives. Method A mailed Personal Concerns survey was completed by 108 United Kingdom and 119 United States adult family caregivers of people with Huntington disease in 2006 and 2007. Survey responses included frequency and intensity of concerns, and narrative comments. Data were analyzed using descriptive statistics of the products of frequency and intensity of reaction scores to identify a Personal Concerns Index for items with the twelve highest combined scores. Factor analysis identified three factors, which were compared between respondents by factor and items within factors using t tests mean frequency by intensity scores. Narrative comments were thematically analyzed. Results Three main factors were labelled Impact of Role Change, Sense of Isolation, and Concerns for Children. Within the Role Change factor, United States family caregivers had significantly higher concerns regarding family finances and United Kingdom caregivers expressed significantly greater personal sadness. Both groups expressed concern regarding isolation from family. Although family caregivers in both countries expressed concern regarding their children, those of United States caregivers were significantly higher. Conclusion Further studies are required to identify benefits of support services that are specific to caregiver concerns and consistent with national healthcare systems.

The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions

“…23 Caregivers of individuals with neurodegenerative diseases like HD face their own unique barriers. 17,24,25 The average age of onset for HD is 25 years and the average age of death is 57 years; there are no curative phases or treatments to slow the progression of the disease and extend life. 26 Therefore, individuals often require assistance for approximately 20 or more years.…”

“…In prodromal stages, adult caregivers may not discuss the illness with employers, family, friends, and health care providers, to avoid the stigma associated with living with a rare disease. 25 Once diagnosed, care may be provided at home by the family or in a skilled nursing facility; however, most often local long-term care facilities are not flexible in meeting the needs of a person with HD, and may not be prepared to manage the behavioral issues associated with this condition. 20 In fact, in the United States there are only 12 HD Society of America Centers of Excellence dedicated to longterm care, which leaves families searching for appropriate care facilities and/or advocating for appropriate care for their loved ones.…”

Impacto de la enfermedad de Huntington en la familia

“…Aquellos que cuidan a pacientes con un comportamiento desfavorable, en graves etapas de una enfermedad, o en una prolongada duración de la misma, experimentan un mayor impacto (fatiga, estrés, morbilidad física y psíquica, incrementando incluso los índices de mortalidad) 24 . Los sentimientos comunes más descritos para la EH incluyen sobrecarga, estrés, cansancio, e incapacidad para afrontar con éxito la enfermedad 25 . La presencia de hijos en la familia incrementa enormemente el nivel de angustia.…”

“…Es importante destacar que el ambiente en las familias afectadas por la enfermedad es muy distinto al de una familia sin miembros enfermos 25 . La familia responde de forma diferente según las fases de la enfermedad.…”

“…Debido a la existencia de tan devastadoras consecuencias es esencial animar a los cuidadores primarios a mantener su propia salud y bienestar para poder ser capaces de cumplir su papel adecuadamente 25 . Los cónyuges utilizan diferentes estrategias de afrontamiento para gestionar su funcionalidad emocional.…”