Couples' coping in prodromal Huntington disease: a mixed methods study

Area of Science:

• Neuroscience
• Psychology
• Gerontology

Background:

• Huntington disease (HD) presents a prodromal phase up to 15 years before diagnosis.
• This phase involves declines in behavioral, cognitive, and motor functions.
• Understanding coping mechanisms during this early stage is crucial for patient and caregiver support.

Purpose of the Study:

• To examine coping strategies used by individuals in the prodromal phase of HD and their companions.
• To identify effective and ineffective coping mechanisms in managing early HD-related changes.
• To inform therapeutic interventions for couples affected by prodromal neurodegenerative conditions.

Main Methods:

• Mixed-methods approach combining semi-structured interviews and the Brief COPE inventory.
• Study included 23 couples where one partner was in the prodromal phase of HD.
• Qualitative data supplemented quantitative findings on coping strategies.

Main Results:

• Prodromal HD participants most frequently used acceptance, emotional support, and planning.
• Companions utilized acceptance, planning, and active coping strategies.
• Denial, behavioral disengagement, and substance use were least frequent coping strategies.
• Qualitative data revealed additional strategies like medication use, couple-focused coping, hope, and self-monitoring.

Conclusions:

• Coping strategies vary between individuals with prodromal HD and their companions.
• Effectiveness of coping is often linked to the severity of experienced changes.
• Counseling should integrate active coping for manageable changes and acceptance for unchangeable ones.
• Findings offer insights for supporting patients and caregivers in other neurodegenerative diseases like Alzheimer's and Parkinson's.