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Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving488.52 kB
Published VersionCC BY-NC V4.0, Open Access
Journal article
Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving
Journal of Huntington's Disease, Vol.6(3), pp.169-177
2017
PMCID: PMC5682576
PMID: 28968240
Abstract
Background:
Family functioning in Huntington’s disease (HD) is known from previous studies to be adversely affected. However, which aspects of family functioning are disrupted is unknown, limiting the empirical basis around which to create supportive interventions.
Objective:
The aim of the current study was to assess family functioning in HD families.
Methods:
We assessed family functioning in 61 participants (38 HD gene-expanded participants and 23 family members) using the McMaster Family Assessment Device (FAD; Epstein, Baldwin and Bishop, 1983), which provides scores for seven domains of functioning: Problem Solving; Communication; Affective Involvement; Affective Responsiveness; Behavior Control; Roles; and General Family Functioning.
Results:
The most commonly reported disrupted domain for HD participants was Affective Involvement, which was reported by 39.5% of HD participants, followed closely by General Family Functioning (36.8%). For family members, the most commonly reported dysfunctional domains were Affective Involvement and Communication (both 52.2%). Furthermore, symptomatic HD participants reported more disruption to Problem Solving than pre-symptomatic HD participants. In terms of agreement between pre-symptomatic and symptomatic HD participants and their family members, all domains showed moderate to very good agreement. However, on average, family members rated Communication as more disrupted than their HD affected family member.
Conclusion:
These findings highlight the need to target areas of emotional engagement, communication skills and problem solving in family interventions in HD.
Details
- Title
- Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving
- Authors
- Celine M H Jona (Author) - Monash UniversityIzelle Labuschagne (Author) - Monash UniversityEmily-Clare Mercieca (Author) - Monash UniversityFiona Fisher (Author) - Calvary Health Care BethlehemCathy Gluyas (Author) - Calvary Health Care BethlehemJulie C Stout (Author) - Monash UniversitySophie C Andrews (Author) - Monash University
- Publication details
- Journal of Huntington's Disease, Vol.6(3), pp.169-177
- Publisher
- IOS Press
- Date published
- 2017
- DOI
- 10.3233/JHD-170250
- ISSN
- 1879-6400; 1879-6397
- PMID
- 28968240; PMC5682576
- Copyright note
- This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License (CC BY-NC 4.0)
- Organisation Unit
- University of the Sunshine Coast, Queensland; Thompson Institute; School of Health - Psychology; School of Health and Behavioural Sciences - Legacy
- Language
- English
- Record Identifier
- 99659596202621
- Output Type
- Journal article
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