Search results for ‘Subject term:"physical disabilities"’ Sort:
Results 1 - 6 of 6
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.
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.
'I value what you have to say'. seeking the perspective of children with a disability, not just their parents
- Authors:
- GARTH Belinda, ARONI Rosalie
- Journal article citation:
- Disability and Society, 18(5), August 2003, pp.561-576.
- Publisher:
- Taylor and Francis
The UN Convention on the Rights of the Child acknowledges the right for children to express opinions about issues affecting them and the right to have these views heard. There has been an increase in the number of international studies including children as informants in research, but there is noticeably less published research including children as informants in Australia if they have a disability. Rather, there has been a reliance on parents/carers for insight into their child's experiences. In this article the authors present the results of a qualitative pilot study where they interviewed parents and their children who have cerebral palsy about their perceptions and experiences of communication in the medical consultation. The authors found that the views of children and parents were different, further reiterating the need to seek the perceptions of children as well as their parents.
Some of the implications on caring for a child or adult with cerebral palsy
- Author:
- PIMM Paul L.
- Journal article citation:
- British Journal of Occupational Therapy, 59(7), July 1996, pp.335-341.
- Publisher:
- Sage
Many studies have suggested that the presence of a child or adult with a disability in a family can have a significant impact upon family members, in particular the primary caregiver. Research findings have indicated that there may be social isolation, lack of awareness of services, poor service delivery and psychiatric disorders among parents. This article, part of a larger research undertaking, presents some key survey findings from a study of mothers and fathers of children and adults with cerebral palsy. The parents evaluated the caring process and their satisfaction with the professionals involved in service delivery. The prevalence of psychiatric morbidity among the parents is also reported. The findings indicate that the mental well-being of many fathers and even more mothers was severely affected by the caring process. High levels of parental dissatisfaction with some professionals are reported.
Asian carers' experiences of medical and social care: the case of cerebral palsy
- Authors:
- MIR Ghazala, TOVEY Philip
- Journal article citation:
- British Journal of Social Work, 33(4), June 2003, pp.465-479.
- Publisher:
- Oxford University Press
This paper discusses the experience of South Asian carers of a person with cerebral palsy. Previous research in this area has failed to explore carers' perceptions of causation or their views on the quality of service support. Qualitative interviews were carried out with twenty carers in two localities in the north of England with the aim of providing in-depth contextualized data on their experiences over time, their attitudes towards cerebral palsy and their interactions with service provision. Results show that parents' views on causation differ markedly from explanations based on a medical, genetic model of cause. Parental attitudes towards cerebral palsy are shown to be influenced both by interactions with service professionals and by parents' ability to manage their situation. The absence of adequate material and emotional resources may foster a negative construction of disability by parents that, in turn, has detrimental effects on the individual with cerebral palsy. Parents' religious beliefs can act as a source of emotional support that helps them develop a constructive perspective on disability and deal with future uncertainty. The authors This paper discusses the experience of South Asian carers of a person with cerebral palsy. Previous research in this area has failed to explore carers' perceptions of causation or their views on the quality of service support. Qualitative interviews were carried out with twenty carers in two localities in the north of England with the aim of providing in-depth contextualized data on their experiences over time, their attitudes towards cerebral palsy and their interactions with service provision. Results show that parents' views on causation differ markedly from explanations based on a medical, genetic model of cause. Parental attitudes towards cerebral palsy are shown to be influenced both by interactions with service professionals and by parents' ability to manage their situation. The absence of adequate material and emotional resources may foster a negative construction of disability by parents that, in turn, has detrimental effects on the individual with cerebral palsy. Parents' religious beliefs can act as a source of emotional support that helps them develop a constructive perspective on disability and deal with future uncertainty.