Jan Pieter Marchal1, Heleen Maurice-Stam2, A S Paul van Trotsenburg3, Martha A Grootenhuis4. 1. 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. 2. 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. 3. 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. 4. 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.
Abstract
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. AIMS: 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 AND IMPLICATIONS: 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.
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. AIMS: 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 AND IMPLICATIONS: 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.
Authors: Marisa Garcia Rodrigues; Matilde Monteiro Soares; José Daniel Rodrigues; Luís Filipe Azevedo; Pedro Pereira Rodrigues; José Carlos Areias; Maria Emília Areias Journal: Qual Life Res Date: 2021-09-05 Impact factor: 4.147
Authors: María Inmaculada Fernández-Ávalos; María Nieves Pérez-Marfil; Rosario Ferrer-Cascales; Francisco Cruz-Quintana; Violeta Clement-Carbonell; Manuel Fernández-Alcántara Journal: Int J Environ Res Public Health Date: 2020-11-23 Impact factor: 3.390
Authors: Marcia Van Riper; George J Knafl; Maria do Céu Barbieri-Figueiredo; Maria Caples; Hyunkyung Choi; Gert de Graaf; Elysângela Dittz Duarte; Junko Honda; Elena Marta; Supapak Phetrasuwan; Sara Alfieri; Margareth Angelo; Wannee Deoisres; Louise Fleming; Aline Soares Dos Santos; Maria João Rocha da Silva; Beth Skelton; Shelley van der Veek; Kathleen A Knafl Journal: J Fam Nurs Date: 2020-12-04 Impact factor: 3.818