부산대학교 도서관

1. Illustrate the gravity and significant themes of Huntington's disease (HD) caregiver spiritual distress, grief and loss, and coping strategies, and how they relate to one another 2. Outline a strategy to integrate with interdisciplinary neurology-based teams to foster more compassionate engagement and psycho-socio-spiritual support for family caregivers of patients with HD Huntington's disease (HD), an incurable, multigenerational, autosomal dominant disorder, creates unique challenges and myriad spiritually related stressors in those affected and their familial caregivers. Spiritual distress has not previously been systematically studied among HD caregivers. We aimed to comprehensively define the elements of HD caregiver spiritual pain. A PRISMA-ScR scoping literature review initially identified 465 articles. Original research studies, including quantitative and qualitative studies, were included. Review articles, studies validating tools, and single case reports were excluded. Data from included research articles were organized thematically via induction and open coding. A grounded, deductive approach delineated a demarcated taxonomy of key themes. Four reviewers, using a modified Delphi approach, ascertained which themes were clearly demonstrated by research participants in each study. 36 of 465 articles met review criteria; none were published in the palliative care literature. Data extraction and coding produced an overarching framework to understand HD caregiver spiritual suffering, grief and loss, and coping mechanisms. Investigations focused primarily on intrapersonal (self-image) spiritual distress and existential angst, only rarely looking deeper into divine or transpersonal suffering, disrupted religious relationships, or meaning distress. HD caregivers experience profound grief and loss, expressed as disenfranchised grief or ambiguous loss of their loved one, loss of family structure, loss of social connectedness, and practical and personal losses. The majority of studies reported maladaptive HD caregiver coping strategies, characterized by dysfunctional escape schemes; in contrast, transcendent or creative strategies were often unexplored. HD caregivers experience prolonged and complicated grief and many other forms of spiritual suffering as they progressively lose their loved one—as well as their own lives as they have known them. The comprehensive taxonomy that we defined will be used to create an improved spiritual pain and coping assessment tool that will be piloted and validated in the HD community, so that palliative care experts may one day integrate into neurology-based interdisciplinary teams to better support HD caregivers and families. [ABSTRACT FROM AUTHOR]