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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.
The needs of disabled children and their families: findings
- Author:
- JOSEPH ROWNTREE FOUNDATION
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 1995
- Pagination:
- 4p.
- Place of publication:
- York
A national survey of over a thousand parents has explored the needs and circumstances of families caring for a severely disabled child. The research, carried out by Bryony Beresford at the Social Policy Research Unit, University of York, sought parents' views of their and their child's needs as well as their experiences as service users. Parents also reported the care demands and impact on living circumstances brought about by having a disabled child. Comparisons with data collected twenty years ago indicate little improvement in the circumstances in which families are caring for their severely disabled child.
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.
The impact of major events in the lives of family caregivers of children with disabilities
- Authors:
- MCDONALD Thomas P., COUCHONNAL Graciela, EARLY Theresa
- Journal article citation:
- Families in Society, 77(8), October 1996, pp.502-514.
- Publisher:
- The Alliance for Children and Families
Examines the family caregiving experience among families with children with severe emotional disabilities from a perspective that recognises the importance of the family's views and feeling. This viewpoint anticipates the occurrence of both positive and negative experiences and seeks to illuminate the caregiving process from the outcomes achieved. Family caregivers of children with severe emotional disorders were asked to identify major pleasant and stressful events that had occurred in the past 12 months. The impact of these events was examined with respect to caregivers' perceived well-being: overall stress, the ability to fulfil responsibilities, and pleasure experienced in various life domains. Implications of the study findings for supporting family caregivers in their roles are discussed.
Young carers in the UK: research, policy and practice
- Authors:
- BECKER Saul, DEARDEN Chris, ALDRIDGE Jo
- Journal article citation:
- Research Policy and Planning, 18(2), 2000, pp.13-21.
- Publisher:
- Social Services Research Group
There is now a considerable body of research which shows that when children undertake significant care work within the home, and where they and their families lack appropriate health and social care support and adequate income, then many children can experience a range of outcomes, including impaired well-being, health and psycho-social development, poor educational attendance and performance, restricted peer networks and friendships and difficulties in making the smooth transition from childhood to adulthood. This article reviews the main research studies on young carers in the UK, examines the services available to support young carers and identifies the implications for future policy and practice, particularly in social care.
Growing up with disability
- Editors:
- ROBINSON Carol, STALKER Kirsten
- Publisher:
- Jessica Kingsley
- Publication year:
- 1998
- Pagination:
- 215p.,bibliogs.
- Place of publication:
- London
Adopts a child centred approach to growing up with a disability. Contains papers on: theoretical perspectives on research with disabled children; an historical perspective; early intervention; the pre-school years; children's experiences of school; parents and family; leisure and friendship; quality of life of children and young people with serious medical conditions; disabled children and child protection; group advocacy in a residential setting; disabled children in permanent substitute families; young people's aspirations; and the dynamic of transition to adulthood.