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The HARC challenging behaviour project: report 4: experience and views of parents caring for people with learning disabilities living in the family home
- Authors:
- KIEMAN Chris, et al
- Publisher:
- University of Manchester. Hester Adrian Research Centre
- Publication year:
- 1997
- Pagination:
- 31p.
- Place of publication:
- Manchester
In 1994 the Department of Health commissioned the Hester Adrian Research Centre at the University of Manchester and the Centre for Health Economics at the University of York to undertake a series of projects to investigate aspects of challenging behaviour shown by people with learning disability. These projects extended workv previously undertaken at the Hester Adrian Research Centre. In particular they built upon a study of the prevaence of challenging behaviour in the areas served by seven District Health Authorities in the North West of England in 1988.
Meeting the needs of children with disabilities: families and professionals facing the challenge together
- Author:
- WARNER Helen K.
- Publisher:
- Routledge
- Publication year:
- 2006
- Pagination:
- 166p.
- Place of publication:
- Abingdon
Children with disabilities have needs that reflect the needs of every child of their age or stage of development, but in addition they will have other needs that are unique and special to them. This text provides the reader with an insight into the needs of children with both physical and learning disabilities, particularly within an acute care setting.
Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability
- Authors:
- OELOFSEN Natius, RICHARDSON Phil
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 31(1), March 2006, pp.1-12.
- Publisher:
- Taylor and Francis
Few previous studies have examined Antonovsky's sense of coherence (SOC) in parents of young children with developmental disability (DD). This study explored relationships between parental stress, SOC, social support, and health in parents of preschool children with and without DD. A secondary aim was to explore the relevance of the SOC construct to parental adjustment. Data were analysed from 59 families with preschool children with DD and 45 families of typically developing preschoolers (children without DD) who completed the study questionnaire. Mothers and fathers of children with DD reported high levels of parenting stress, with 84% of mothers' and 67% of fathers' scores falling within the clinical range. Parents of children with DD consistently reported higher levels of parenting stress, weaker SOC, and, for mothers and parents in 2-parent families, poorer health than parents of children without DD. Within families, mothers of children with DD reported poorer health, higher levels of parenting stress, and weaker SOC than their partners. There were no significant differences in reported health, parenting stress, or SOC between parents of children without DD. The results supported previous findings on high levels of parental stress in parents of preschool children with DD. The weaker SOC of parents of children with DD is likely to be an indication of the pervasive impact on parents of their child's DD. These findings also indicated possible gender differences in parental adjustment to their child's DD. Overall, the findings of this study support the usefulness of SOC theory in understanding adaptation in parents of children with DD.
The international handbook of applied research in intellectual disabilities
- Editors:
- EMERSON Eric, et al, (eds.)
- Publisher:
- John Wiley and Sons
- Publication year:
- 2004
- Pagination:
- 639p.
- Place of publication:
- Chichester
The handbook presents, explains, and illustrates key methods of research and evaluation of proven relevance and value to the field of intellectual disabilities. It features sections on the concepts and theoretical models underlying research and evaluation, the methods and techniques themselves, and the key application areas where the methods are demonstrated in action. Coverage includes applications in educational, social, family, health, and employment aspects of care and provision for those with intellectual disabilities.
Paradoxes, locations and the need for social coherence: a qualitative study of living with a learning difficulty
- Authors:
- CLARKE Charlotte L., et al
- Journal article citation:
- Disability and Society, 20(4), June 2005, pp.405-419.
- Publisher:
- Taylor and Francis
Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of adults with learning difficulties in north-east England and their family and to appraise their care. Thirty-five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self-limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.
Health care for disabled children and young people: a review of how the health care needs of disabled children and young people are met by the commissioners and providers of health care in England: special review
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2012
- Pagination:
- 48p.
- Place of publication:
- Newcastle upon Tyne
This review looked at the support available for families with children that have a disability. It focused on families that have children under the age of 19 with: a learning disability; autism or autistic spectrum disorders; communication needs; sensory needs; mental health and behavioural support; mobility needs; and technology dependence. In particular, this review looked at: the availability of specialist health services for disabled children and young people and their families; an assessment of the quality of support in a geographical area linked to primary care trusts; and the ‘building blocks’ of the care pathway that are of particular importance to families. The review presents the views and experiences of disabled children and their families as well as survey data from commissioners and acute hospitals about services provided from September 2009 to September 2010. Findings suggested that families felt access to and involvement in services was a challenge and that they waited too long for access to services and for initial diagnosis. Contributors felt services were not joined up and that different services did not work well together. Many disabled children and their families also reported they had not been consulted on how their care had been provided. There was also significant disparity between the experiences of disabled children and their families, which were overwhelmingly negative compared to the data supplied by primary care trusts, which showed high levels of access and user-centred care.
Poverty and children with intellectual disabilities in the world's richer countries
- Author:
- EMERSON Eric
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 29(4), December 2004, pp.319-338.
- Publisher:
- Taylor and Francis
The experience of poverty has a pervasive impact on the health (including mental health) of children and their parent(s), on family functioning and on the life course of children. The aim of this paper is to consider the relevance of poverty to our understanding of the health (and mental health) of children with intellectual disabilities in the world's richer countries. It is suggested that poverty is of considerable relevance to this area as: (1) young people with intellectual disabilities are at greater risk than their non-disabled peers of experiencing poverty; (2) the experience of poverty is likely to be associated with poor parental health and well-being and consequently poorer parenting practices; and (3) the experience of poverty is likely to be associated with poor child health and well-being. Implications for future research, policy and practice are discussed.
National service framework for children, young people and maternity services: autism spectrum disorders
- Authors:
- GREAT BRITAIN. Department of Health, GREAT BRITAIN. Department for Education and Skills
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2004
- Pagination:
- 20p.
- Place of publication:
- London
The National Service Framework (NSF) for Children and Maternity Services is published alongside supporting material, which includes a series of exemplar patient journeys. Whilst it is not the role of the NSF or the exemplars to provide detailed clinical discussion on individual childhood conditions or aspects of pregnancy or childbirth, exemplars illustrate some of the key themes in the NSF. Autism is a spectrum disorder and every child will present differently and have needs specific to them. This example is just one example of the possible patient journey.
GP and support people's concerns and priorities for meeting the health care needs of individuals with developmental disabilities: a metropolitan and non-metropolitan comparison
- Authors:
- IACONO Teresa, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 28(4), December 2003, pp.353-368.
- Publisher:
- Taylor and Francis
General practitioners (GPs) from the Australian state of Victoria and support people were surveyed about their concerns and priorities for meeting the health care needs of people with developmental disabilities. Despite the poor response rate (22% and 27%), sampling adequacy was obtained, and the tools were found to have construct validity. According to the results, GPs had concerns about the assessment and management of people with developmental disability and tended to rely on support people. They knew about many services in their communities, but were less likely to know about non-medical, and government and non-government disability services. Support people reported concerns about health care service providers' lack of knowledge, family stress during periods of hospitalisation, and, particularly for rural respondents, the need to travel to access services. There were relatively few differences in responses from metropolitan versus non-metropolitan respondents, which may be explained by the relative accessibility of Victorian rural towns when compared with other Australian states.
Down Syndrome and health care: a guide for professionals, carers and families on the health needs of adults with Down Syndrome
- Authors:
- PRASHER Vee, SMITH Beryl
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2002
- Pagination:
- 154p.bibliog.
- Place of publication:
- Kidderminster
This book deals with both the minor and more serious health issues for people with Down syndrome, their possible causes and how they can be managed. Personal and social issues are covered, as well as specific medical issues, a medical checklist and further sources of information.