title: Comparison of impact on mood, health, and daily living experiences of primary caregivers of walking and non-walking children with cerebral palsy and provided community services support.
abstract: Many children with cerebral palsy (CP), especially non-walkers, were previously reported to have cold extremities, pain, sleeping disorders, constipation, and impaired well-being - besides accompanying impairments. Most children had had one or more of these symptoms for more than 1 year, and the symptoms were largely untreated. This study (1) describes mood, health, and daily life experiences of the children's parents; (2) explains impact that the child's impairments and symptoms have on the family; and (3) investigates community services support. Information in this study was gathered from parents of 106 children, ages 5-16, with CP, who lived in northern Sweden. Compared with parents of walkers, parents with non-walking children and several disorders were more frequently anxious for their children's physical and psychological health; often experienced restricted time for themselves; reported frequent daily living interferences; and stated that their health was affected due to the child's health. 10 percent of all families reported that their need of community services support was unmet. To improve health and to provide good community services support for the entire family, regular follow-up and evaluation of the child's treatment and family support are important.
authors.affiliation: Institute of Neuroscience and Physiology, Sahlgrenska Academy, Göteborg University, Göteborg, Sweden. lena.svedberg@fhs.gu.se
authors.forename: Lena E
authors.initials: LE
authors.lastname: Svedberg
authors.forename: Erling
authors.initials: E
authors.lastname: Englund
authors.forename: Hans
authors.initials: H
authors.lastname: Malker
authors.forename: Elisabet
authors.initials: E
authors.lastname: Stener-Victorin
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D000328:Adult; D001007:Anxiety / Q000453:epidemiology; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D002547:Cerebral Palsy / Q000451:nursing* / Q000534:rehabilitation; D003258:Consumer Behavior; D017281:Cost of Illness; D005260:Female; D006301:Health Services Needs and Demand; D006304:Health Status; D006699:Home Care Services; D006801:Humans; D008297:Male; D008603:Mental Health; D051346:Mobility Limitation; D019964:Mood Disorders / Q000453:epidemiology*; D010287:Parent-Child Relations; D011787:Quality of Health Care; D011788:Quality of Life; D012944:Social Support; D012946:Social Welfare / Q000706:statistics & numerical data* / Q000639:trends; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000453:epidemiology*; D011795:Surveys and Questionnaires; D013548:Sweden / Q000453:epidemiology