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. 2017;6(3):169-177.
doi: 10.3233/JHD-170250.

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

Celine M H Jona  1 , Izelle Labuschagne  1   2 , Emily-Clare Mercieca  1 , Fiona Fisher  3 , Cathy Gluyas  3 , Julie C Stout  1 , Sophie C Andrews  1
Affiliations

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

Celine M H Jona et al. J Huntingtons Dis. 2017.

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.

Keywords: Affective involvement; Huntington’s disease; communication; family; family functioning; problem solving.

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Figures

Fig.1
Fig.1
Study participation diagram. HD = Huntington’s disease participant, FM = Family Member.
Fig.2
Fig.2
Proportion of Huntington’s disease participants reporting disrupted family functioning on Family Assessment Device subscales, by symptom status. Note. *=p < 0.05; cut off score for each subscale is shown in Table 2.
Fig.3
Fig.3
Proportion of Family Member participants reporting disrupted family functioning on Family Assessment Device subscales, by symptom status of HD participant. Note. Cut off score for each subscale is shown in Table 2.
See this image and copyright information in PMC

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