Mothers and fathers of young Dutch adolescents with Down syndrome: Health related quality of life and family functioning.
BACKGROUND
Like any child, children with Down syndrome (DS) affect the lives of their families. Most studies focus on the adaptation of parents and families of young children with DS, while relatively few studies include the perspective of fathers.


OBJECTIVE
To determine 1) whether mothers and fathers of 11 to 13-year-olds with DS differ from reference parents in health related quality of life (HRQoL) and family functioning, and 2) whether HRQoL in parents of children with DS changes over time, from when the child was 6-8 years old to when the child was 11-13 years old.


METHODS
80 mothers and 44 fathers completed HRQoL and family functioning questionnaires. 58 parents (53 mothers) had completed the HRQoL-questionnaire in a previous study.


RESULTS
Mothers differed from reference mothers in one HRQoL-domain (Sexuality), while fathers' HRQoL did not significantly differ from reference fathers. Both mothers and fathers scored in the (sub)clinical range more frequently than reference parents in Total family functioning, and in the domains Partner relation and Social network. Furthermore, fathers scored in the (sub)clinical range more frequently than reference parents in Responsiveness and Organization. HRQoL showed no significant change over time.


CONCLUSIONS
Our findings indicate frequent family functioning problems but few HRQoL problems in parents and families of children with DS. In offering care, a family based approach with special attention for partner relation and social functioning is needed.
Psychosocial Department, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Post box 22660, 1100 DD, Amsterdam, The Netherlands; Department of Paediatric Endocrinology, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Post box 22660, 1100 DD, Amsterdam, The Netherlands. Electronic address: j.p.marchal@amc.uva.nl.
Jan Pieter
JP
Marchal
Psychosocial Department, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Post box 22660, 1100 DD, Amsterdam, The Netherlands. Electronic address: h.maurice-stam@amc.uva.nl.
Heleen
H
Maurice-Stam
Department of Paediatric Endocrinology, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Post box 22660, 1100 DD, Amsterdam, The Netherlands. Electronic address: a.s.vantrotsenburg@amc.uva.nl.
A S Paul
ASP
van Trotsenburg
Psychosocial Department, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Post box 22660, 1100 DD, Amsterdam, The Netherlands. Electronic address: m.a.grootenhuis@amc.uva.nl.
Martha A
MA
Grootenhuis
D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D004314:Down Syndrome; D005195:Family Relations / Q000523:psychology*; D005220:Fathers / Q000523:psychology*; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D009426:Netherlands; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires
Down syndrome; Family; Fathers; Parents; Quality of life