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'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.
Children of disabled parents: new thinking about families affected by disability and illness
- Author:
- NEWMAN Tony
- Publisher:
- Russell House
- Publication year:
- 2003
- Pagination:
- 138p.,bibliog.
- Place of publication:
- Lyme Regis
The theme of this book is neither that parental disability is always a source of risk or suffering for children, nor that it will leave children unaffected and in no need of help or protection. It is rather that, whether disabled or not and despite their occasional failings, parents are the most important source of support for children, and that disability is a normal and essentially unremarkable aspect of the human condition.
Children as carers: the impact of parental illness and disability on children's caring roles
- Authors:
- ALDRIDGE Jo, BECKER Saul
- Journal article citation:
- Journal of Family Therapy, 21(3), August 1999, pp.303-320.
- Publisher:
- Wiley
The nature and extent of young caring in the UK continues to be a feature of a growing number of research programmes motivated by a children and carer's rights philosophy. This paper examines the arguments put forward by medical researchers, by those proposing a social model of disability and by those who have specifically investigated the conditions and experiences of young carers. A 'whole family approach' is proposed, which is responsive to both parents and children.
Ordinary, everyday families: action for families and their young children with special needs, disabilities and learning difficulties
- Authors:
- CAMERON Jo, STURGE-MOORE Leonie
- Publisher:
- Mencap
- Publication year:
- 1990
- Pagination:
- 139p.,illus.
- Place of publication:
- London
Report drawn together from the experience of MENCAP's Under Fives Project and put into the context of what other people have demonstrated in examples of good practice. Drawn together from practical experience, the report aims to challenge attitudes and encourage social integration for parents and their children with special needs. Includes sections on: enabling families with children with special needs to live ordinary lives; enabling professionals to help families live ordinary lives; cooperation between agencies involved; support services; the importance of early support; community support; and the role of education. Each section contains suggestions and checklists for action support and service improvement.
More than just a health issue: a review of current issues in the care of enterally-fed children living in the community
- Authors:
- TOWNSLEY Ruth, ROBINSON Carol
- Journal article citation:
- Health and Social Care in the Community, 7(3), April 1999, pp.216-224.
- Publisher:
- Wiley
This article reviews the literature on support for children who are tube fed and makes a case for more co-ordinated and effective support services for families who are tube feeding a child at home. It is argued that national guidance should be developed which clarifies the position of all non-parent carers and staff who are willing to administer enteral tube feeds. Such guidance should also ensure that enterally-fed children have the same rights to educational and social services as other children and that families are given the opportunity to make informed decisions about the implications of enteral feeding prior to it being established.
Consumer satisfaction with services for disabled children
- Author:
- MIDDLETON Laura
- Journal article citation:
- Journal of Interprofessional Care, 12(2), May 1998, pp.223-231.
- Publisher:
- Taylor and Francis
This article uses existing literature and research to discuss deficiencies in the field of total care for disabled children. Discusses what the reasons for this might be, given the explicit mandate in the Children Act for England and Wales to ameliorate the effects of disability. In particular it balances the parental viewpoint with that of the child, and emphasises the professional difficulties in managing that balance. It raises the complication of child abuse, which is still not widely accepted as a problems for disabled children despite overwhelming research evidence.
Children's services now and in the future
- Editor:
- UTTING David
- Publisher:
- National Children's Bureau
- Publication year:
- 1998
- Pagination:
- 135p.,tables,bibliog.
- Place of publication:
- London
Considers how services need to be structured and planned to meet the needs of children and families in the new millennium. Includes chapters on: effective central government structures for children; involving children in health care planning and delivery; an agenda for education services and a flexible curriculum; the impact of local government on policies and practice in services for children; preventing antisocial behaviour in young people; the voluntary sector and children's mental health; and children's services plans.
Children (Scotland) Act 1995: information pack
- Author:
- CHILDREN IN SCOTLAND
- Publisher:
- Children in Scotland
- Publication year:
- 1996
- Pagination:
- 12 sheets in pack.
- Place of publication:
- Edinburgh
Contains 12 fact sheets on the Children (Scotland) Act 1995. Covers: childrens rights; parental responsibilities and rights and court orders; parental responsibilities orders; children's services plans; co-operation between agencies; information; children in need; children looked after, accommodation and after care; children's hearings, child protection and exclusion orders; children with and affected by disabilities; adoption; and day care for pre-school and other children.
Children in society: contemporary theory, policy and practice price
- Editors:
- FOLEY Pam, ROCHE Jeremy, TUCKER Stanley
- Publisher:
- Palgrave
- Publication year:
- 2001
- Pagination:
- 299p.,bibliog.
- Place of publication:
- Basingstoke
Collection of papers providing a critical and comprehensive account of the theoretical and practical issues raised in working with children and their families. Includes chapters on: the development of child health and welfare services in England; the changing experience of childhood; the demonisation of children; racism; child care policy; children's policy in the European Union; quality of life for children; children's rights; mothers, children and healthcare at home; listening to children; community development as a strategy for empowerment; children's hearings in Scotland; parental responsibility; the impact of domestic violence on children; primary education in Scotland; children, sexual abuse and the child protection system; foster families; external influences on workplace competence; an ecological perspective on child abuse; children's health at school; theories of child development; working with disabled children; involving children and families in decision making about health; men working in child care; perspectives on parenting; and developing partnership practice.