Caregiving by Teens for Family Members With Huntington Disease

Abstract

The purpose of this report is to describe caregiving by teens for family members with Huntington disease (HD). Thirty-two teens in HD families in the United States and Canada participated in focus groups from 2002 to 2005 in a study to identify concerns and strategies to manage concerns. An unexpected finding was 24 (77%) described caregiving activities. Descriptive analysis of caregiving statements identified themes of Tasks and Responsibilities, Subjective Burden, Caregiving in Context of Personal Risk for HD, and Decisional Responsibility. Teens took an active part in nearly all aspects of care with the exception of contacting health care providers and attending doctors’ appointments. Some described emotional distress, and many provided care knowing they had the potential to develop HD. Teens recognized the need for decisions but lacked the authority to make these decisions. Findings may be relevant for other teens who strive to meet caregiver and student roles and developmental tasks.

Perceived economic burden associated with an inherited cardiac condition: a qualitative inquiry with families affected by arrhythmogenic right ventricular cardiomyopathy

“…The literature on other disorders (e.g., Huntington disease) suggests that accessing appropriate support may be important for children who help to provide care to their affected relatives or perceive themselves as having to contribute to the family finances and day-to-day functioning. The limited research in this area reveals that it is a demanding role with the potential for negative developmental impacts and emotional distress, 30,31 which may be exacerbated by their own risk for the family mutation. Research is needed to determine the factors that could minimize negative outcomes for children in families affected by ARVC.…”

“…These explanations correspond to the larger literature on genetic conditions, which suggests that being asymptomatic or somehow "removed" from the family illness (whether geographically or socially) reduces its perceived psychological impact. 30,31,40 …”

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

“…16 In addition, caregivers are generally uncertain how to integrate the ill individual and their daily care needs into the overall needs of the family, and this dilemma can negatively impact family functioning. 17 Within the rare disease experience, uncertainty adds a layer of stress to the patient and caregiver that is not as prevalent in individuals with more common illnesses.…”

“…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.…”

“…The younger the caregiver, the higher the potential level of stress. 17 It is not uncommon for a teen to be caring for a parent or sibling with a heritable disease like HD, where they have the burden of decisional responsibility without the legal authority to enforce these decisions. The experience of caregiving at a young age along with, in some cases, the knowledge that they may also develop the condition, can lead to a high rate of depression and anxiety, and feelings of isolation from peers, as well as negative impacts on their own health.…”