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Advisory Committee Chair

Marie Bakitas

Advisory Committee Members

Melinda Kavanaugh

J Nicholas Dionne-Odom

Emily Johnston

Gwendolyn Childs

Document Type

Dissertation

Date of Award

2021

Degree Name by School

Doctor of Philosophy (PhD) School of Nursing

Abstract

Due to the progressive deterioration of motor, cognitive, and psychological function experienced by individuals diagnosed with Huntington’s disease, there is the potential for children in the home to adopt a caregiving role. These young carers typically serve as informal, secondary caregivers, providing multifaceted, extended care without any lessening of typical family, home, or school/work-related responsibilities. In time, this role may result in parentification, a type of role reversal with both positive and negative outcomes for the child. A secondary analysis of qualitative data of the experiences of children who have a parent with Huntington’s disease was conducted. Transcripts of qualitative interviews were explored for the manifestation of parentification among young carers in the context of Huntington’s disease. A directed content analysis of interview data was conducted and guided by a literature derived framework of parentification among young carers. The sample consisted of 28 individuals with a mean age of 16.6 who all self- identified as engaging in activities to help their parent with Huntington’s disease. The majority of these children had been providing care for 1-3 years (53.6%) with an average of 25.4 hours of care provided per week. Data analysis resulted in three main themes: 1) being a young carer, 2) dealing with it, and 3) facing the uniqueness of being a Huntington’s disease caregiver. Subthemes related to the topics of caregiver burden, feelings regarding the young carer role, coping, personal growth, school/peer relationships, feeling unheard and alone, acknowledging end of life, genetic risk, and stigma and isolation surrounding the illness. Being a young carer of a person with Huntington’s disease presents unique challenges and elements of parentification were evident in some, but not all carers. Exploring how parentification may manifest in the context of a genetic disease that can be transmitted to the young carer is important for guiding future policy, research, and support services.

Included in

Nursing Commons

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