The following is a summary of “Layers of Loss: A Scoping Review and Taxonomy of HD Caregivers’ Spiritual Suffering, Grief/Loss and Coping Strategies,” published in the January 2023 issue of Pain Management by Leidl, et al.


Huntington’s disease (HD), an incurable, multigenerational, autosomal dominant condition, poses special difficulties and a variety of pressures with a spiritual component to them as well as to their family carers. The feelings of spiritual anguish, grief/loss, and coping mechanisms among HD carers were not thoroughly explored. For a study, researchers sought to fully explain spiritual pain, grief/loss, and the coping mechanisms HD caregivers employ.

A scoping PRISMA-ScR literature review was completed. The data from the included research publications were arranged thematically using open coding and induction. A taxonomy of themes that included all three overarching categories was established using a grounded, deductive methodology. Using a modified Delphi methodology, four reviewers determined which themes were displayed by research participants in each study.

Although none of the 36 papers out of 583 that matched the screening criteria were written for palliative care, Investigations tended to concentrate on existential anxiety and intrapersonal (self-image) misery, rarely delving further into suffering on a divine or transpersonal level, broken religious ties, or meaning distress. The loss of a loved one, the dissolution of the family unit, the loss of social ties, and individual losses all caused HD caregivers to feel intense grief and loss, which they expressed as disenfranchised grief. Transcendent/creative coping techniques, on the other hand, were frequently under-examined. Half of the studies showed and maladaptive HD caregiver coping strategies, defined by dysfunctional, escape schemes.

As they lost their loved ones over time and had their lives disrupted, HD caregivers went through chronic bereavement and various types of spiritual pain. Teams with spiritual and palliative care professionals would be better equipped to help HD family caregivers with an updated evaluation tool.

Reference: jpsmjournal.com/article/S0885-3924(22)00907-1/fulltext