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The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers
- Authors:
- DAVIS E., et al
- Journal article citation:
- Child: Care, Health and Development, 36(1), January 2010, pp.63-73.
- Publisher:
- Wiley
Although caring for a child with cerebral palsy (CP) can impact on the caregivers’ quality of life (QOL) this has yet to be adequately examined. The aims of this study were to explore the QOL of mothers and fathers of children with CP aged 3–18 years, and examine whether the impact of caring for a child with CP changes from childhood to adolescence. A qualitative study was conducted utilising a grounded theory framework. 24 mothers and 13 fathers of children and adolescents with CP and with varying levels of impairment participated in semi-structured interviews about their QOL. The transcripts were analysed to identify issues affecting parental QOL. Results revealed there were no differences in parental QOL among subgroups - mothers and fathers, age groups, GMFCS levels. Parental QOL ranged across a wide spectrum. Caring for a child with CP affects a parent's physical well-being, social well-being, freedom and independence, family well-being and financial stability. Parents indicated that they often feel unsupported by the services they access. The authors conclude that caring for a child with CP can both positively and negatively impact on a parent's life. If parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families, both parents and children benefit.
Employment change and the role of the medical home for married and single-mother families with children with special health care needs
- Authors:
- DERIGNE Leaanne, PORTERFIELD Shirley
- Journal article citation:
- Social Science and Medicine, 70(4), February 2010, pp.631-641.
- Publisher:
- Elsevier
The authors hypothesised that whether or not a child with special health care needs usual source of care meets the criteria for a “medical home” influences parents’ employment decisions. This study included 38,569 children with special health care needs from birth to age 17 surveyed in the 2005-2006 US National Survey of Children with Special Health Care Needs. The employment model is estimated using multinomial logistic regression with the choice of a parent to maintain current employment, reduce hours, or stop working as the dependent variable. Independent variables were those characterising the needs of the child, the resources of the family, and the socio-demographic characteristics of the family. Components of the medical home variable included: having a usual source of care; family centred care; care coordination services; and receipt of needed referrals. Half of the children met criteria in all four facets. The relative risk of a parent choosing to cut their hours rather than maintain them decreased by 51% if the child had a medical home. The relative risk of choosing to stop work rather than not change decreased by about 64%. Care coordination services in particular reduced the odds of changing employment status. The authors conclude that the medical home is a moderating factor in parental decisions concerning change in employment status.
Family needs of parents of children and youth with cerebral palsy
- Authors:
- PALISANO R. J., et al
- Journal article citation:
- Child: Care, Health and Development, 36(1), January 2010, pp.85-92.
- Publisher:
- Wiley
Understanding the needs of families of children and youth with cerebral palsy (CP) is important for family-centred services. This study aimed to identify differences in the number and types of family needs expressed by parents based on the age and gross motor function level of their children with CP, identify the most frequent family needs, and identify needs that differ on gross motor function level. 501 parents of children and youth with CP completed a modified version of a Family Needs Survey and a demographic questionnaire. Children's gross motor function level was classified using the Gross Motor Function Classification System. Family needs, including information, community services and finances, differed in number according to gross motor function level. Parents of children/youth using wheeled mobility expressed the most family needs, while those with children/youth who walk without restrictions expressed the fewest. Parents of children and youth using wheeled mobility were more likely to express the need for help in paying for home modifications, equipment, services and locating sitters, respite care providers and community activities. The gross motor function level of children/youth with CP has implications for families’ needs and coordination of services. Family needs for future planning suggest that health professionals should assist families to prepare for key periods in the lives of their children with CP.
Course of behaviour problems of children with cerebral palsy: the role of parental stress and support
- Authors:
- SIPAL R. F., et al
- Journal article citation:
- Child: Care, Health and Development, 36(1), January 2010, pp.74-84.
- Publisher:
- Wiley
Cerebral palsy (CP) is a well-recognised neurodevelopmental condition persisting through the lifespan. In many individuals with CP, motor disorders are accompanied by other disturbances, including emotional and behavioural problems. Little is known on the course of such problems, also in relation to possible exacerbating or mitigating factors. This study aimed to test whether parental stress and support played a significant role in the course of behaviour problems. Participants aged 9, 11 and 13 were assessed and followed up after 1, 2 and 3 years. Situational and relational sources of support and stress for the primary caregiver were rated with a questionnaire on behaviour problems using the Child Behaviour Check List. Motor ability was assessed using the Gross Motor Function Classification System. Behaviour problems of children with CP started significantly higher than in the general population, but diminished over the 3-year period. Older children showed fewer problems overall with girls showing fewer externalising problems than boys and children with the most severe CP having more externalising problems. Across time, an excess of stress vs. support related to parents' socio-economic and living situation and to parents' social relationships was positively related to total behaviour problems, both internalizing and externalising. The study concluded that levels of behaviour problems diminish during adolescence for children with CP. Severity of CP plays a role as well as the family context in terms of the stress and support that caregivers experience.