title: What do parents need to enhance participation of their school-aged child with a physical disability? A cross-sectional study in the Netherlands.
abstract: BACKGROUND
  The aim was to provide an overview of the number, domains and priority of needs as expressed by parents in supporting participation of their school-aged child with a physical disability. Additionally, this study investigated whether the number of needs within each domain is related to the child's gross motor function level, parent's perceived own general health, family socio-economic status and family type.
  
  
  METHODS
  A cross-sectional study with a total of 146 participants (84.9% mothers) who completed a survey including the Family Needs Inventory - Paediatric Rehabilitation, the Gross Motor Function Classification System Family Report Questionnaire, the General Health Questionnaire and a demographic questionnaire. A need has been operationalized as 'a family's, parent's or other family member's expressed desire for information, services and supports related to their family'. Descriptive statistics and correlation analysis were applied.
  
  
  RESULTS
  Parents (n = 146; response rate 27%) varied in the number of expressed needs (range 0-124; mean = 35.9; median = 30; SD = 25.6). Highest mean percentage scores were found for the domains 'Laws, regulations and fees' (36%), 'Leisure time' (35.6%) and 'Aids, adaptations, facilities and resources' (33.8%). Seven single needs were expressed by 50% or more of the parents. All domains of needs showed a positive correlation with perceived parental general health. The domains 'Laws, regulations and fees', 'Day care & school', 'Emotional and mental support' and 'Raising my child' correlated negatively with family socio-economic status; and child's gross motor function level correlated positively with the domains 'Aids, adaptations, facilities and resources', 'Practical support at home' and 'Leisure time'.
  
  
  CONCLUSIONS
  As parents have a major influence on participation of children with a physical disability, meeting their individual needs should become an objective for service providers and policy makers. Family-centred service might be more effective by putting a greater emphasis on changing the environment.
authors.affiliation: Research Centre Autonomy and Participation for Persons with a Chronic Illness, Faculty of Health, Zuyd University of Applied Science, Heerlen, The Netherlands; Department of Occupational Therapy, Faculty of Health, Zuyd University of Applied Science, Heerlen, The Netherlands; Department of Rehabilitation Medicine, CAPHRI, School for Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands; Partner of NetChild, University Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands.
authors.forename: B
authors.initials: B
authors.lastname: Piškur
authors.forename: A J H M
authors.initials: AJ
authors.lastname: Beurskens
authors.forename: M J
authors.initials: MJ
authors.lastname: Jongmans
authors.forename: M
authors.initials: M
authors.lastname: Ketelaar
authors.forename: R J E M
authors.initials: RJ
authors.lastname: Smeets
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D019988:Children with Disabilities / Q000534:rehabilitation*; D005191:Family Characteristics; D005260:Female; D006801:Humans; D008297:Male; D019957:Motor Skills Disorders / Q000145:classification*; D020380:Needs Assessment; D009426:Netherlands; D010290:Parents / Q000523:psychology*; D012720:Severity of Illness Index; D012923:Social Class; D058992:Social Participation / Q000523:psychology*; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: children; cross-sectional study; environment; family needs; family-centred service; physical disability