Abstract
Context
Huntington's disease (HD), an incurable, multi-generational, autosomal dominant disorder,
creating unique challenges and a myriad of spiritually-related stressors in those
affected and their familial caregivers. Spiritual suffering, experiences of grief/loss,
and coping strategies have not been systematically studied in HD caregivers.
Objectives
To comprehensively define spiritual suffering, grief/loss, and coping strategies used
by HD caregivers.
Methods
A PRISMA-ScR scoping literature review was conducted. Data from included research
articles were organized thematically using induction and open coding. A grounded,
deductive approach was used to delineate a demarcated taxonomy of themes, which encompasses
all three over-arching domains. Four reviewers, employing a modified Delphi approach,
ascertained which themes were demonstrated by research participants in each study.
Results
36 of 583 articles met the review criteria; none were published in the palliative
care literature. Investigations primarily focused on intrapersonal (self-image) distress
and existential angst; only rarely looking deeper into divine/transpersonal suffering,
disrupted religious relationships, or meaning distress. HD caregivers experience profound
grief/loss, expressed as disenfranchised grief that is associated with the ambiguous
loss of their loved one, loss of family structure, social connectedness, and personal
losses. Half of the studies reported maladaptive HD caregiver coping strategies—characterized
by dysfunctional escape schemes; in contrast, transcendent/creative strategies were
often unexplored.
Conclusion
HD caregivers experience prolonged grief and other forms of spiritual suffering as
they progressively lose their loved ones and disruption to their own lives. With an
improved assessment tool, teams with spiritual and palliative care experts will better
be able to support HD family caregivers.
Key Words
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Article Info
Publication History
Published online: October 02, 2022
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In Press Journal Pre-ProofIdentification
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© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
