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Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving

Jona, Celine, Labuschagne, I, Mercieca, EC, Fisher, F, Gluyas, C, Stout, JC and Andrews, SC 2017, Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving, Journal of Huntington's Disease, vol. 6, no. 3, pp. 169-177, doi: 10.3233/JHD-170250.

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Title Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving
Author(s) Jona, Celine
Labuschagne, I
Mercieca, EC
Fisher, F
Gluyas, C
Stout, JC
Andrews, SC
Journal name Journal of Huntington's Disease
Volume number 6
Issue number 3
Start page 169
End page 177
Total pages 9
Publisher IOS Press
Place of publication Amsterdam, The Netherlands
Publication date 2017
ISSN 1879-6397
1879-6400
Keyword(s) Affective involvement
Huntington’s disease
communication
family
family functioning
problem solving
Summary 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.
Language eng
DOI 10.3233/JHD-170250
HERDC Research category C1 Refereed article in a scholarly journal
Free to Read? Yes
Persistent URL http://hdl.handle.net/10536/DRO/DU:30140756

Document type: Journal Article
Collections: Faculty of Health
School of Psychology
Open Access Collection
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.