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The adolescent with Down's Syndrome: life for the teenager and for the family
- Authors:
- BUCKLEY Sue, SACKS Ben
- Publisher:
- Portsmouth Polytechnic. Department of Psychology
- Publication year:
- 1987
- Pagination:
- 165p., tables, bibliog.
- Place of publication:
- Portsmouth
Grandparent support for families of children with down's syndrome
- Authors:
- HASTINGS Richard P., THOMAS Hannah, DELWICHE Nicole
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 15(1), 2002, pp.97-104.
- Publisher:
- Wiley
Although grandparents are recognised as an important source of support for families of children with intellectual and other disabilities, there has been very little research in this area. The aim of the present paper is to present a brief overview of the literature, and to present data from a preliminary study of relationships between parental stress and grandparent support and conflict. Sixty-one parents of children with Down's syndrome (34 mothers and 27 fathers) completed questionnaires on grandparent support and conflict. Parents also completed the Friedrich Short Form of the Questionnaire on Resources and Stress (QRS) with scoring amended to include a depression sub-scale. The main findings were: (1) grandparent support and conflict were associated with mothers' but not fathers' ratings of stress on the QRS, and (2) both grandparent support and conflict made independent contributions to the prediction of mothers' stress on at least one dimension of the QRS. Practical implications of the results for interventions designed to encourage grandparent support for families are discussed. Issues for further research and methodological problems with the study are also identified.
Family expectations and transition experiences for young adults with severe disabilities: does syndrome matter?
- Authors:
- BLACHER Jan, KRAEMER Bonnie R, HOWELL Erica J.
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 4(1), March 2010, pp.3-16.
- Publisher:
- Emerald
This study examines the differential impact of young adult diagnosis on families during the period of transition from school to adult life. Two hundred and forty six parents of young adults with severe learning disability, aged 18 to 26 years, participated. The young adults were classified into four diagnostic groups: 30 for autism; 68 for Down's syndrome; 95 for cerebral palsy; and 3 to an undifferentiated learning disability group. The parents were asked questions relating to their expectations of their offspring’s transition to living and working environments post high school, and the parental satisfaction and worries were also assessed. The findings showed that more community expectations of work for young adults with Down's syndrome, and more restrictive expectations for young adults with autism, including more expectations that young adults with autism would move out of the family home into a residential environment. Parents of young adults with autism also worried significantly more about various aspects of transition than other parent groups.
Family subtyping and early intervention
- Authors:
- MARGALIT Malka, AL-YAGON Michal, KLEITMAN Talia
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(1), March 2006, pp.33-41.
- Publisher:
- Wiley
The goal of the study was to identify and differentiate subgroups among mothers whose infants were diagnosed as having a developmental disability. The sample consisted of 80 mothers from intact families in Israel whose infants had such diagnoses, most of whom were diagnosed with Down syndrome. All mothers were receiving early intervention services. Acknowledging the mothers' heterogeneous reactions to their situation, the study attempted to identify discrete family profiles, based on mothers' sense of coherence as a measure of personal strength and family cohesion as a measure of systemic support. Four family subtypes were identified. The authors examined experiences of stress, coping, and affect among these subgroups. Significant differences emerged among these four subgroups in mothers' stress experience, as well as their negative and positive moods. Relations between mothers' strengths and their needs are discussed as related to the early intervention program.
Socio-economic factors: their relationship with child and family functioning for children with Down's Syndrome
- Authors:
- TURNER Stephen, et al
- Journal article citation:
- Mental Handicap Research, 4(1), 1991, pp.80-100.
- Publisher:
- BIMH Publications
Reports on a study of the families of 118 children with Down's Syndrome, and the extent to which parental education and qualifications, social class, and more specific aspects of social and economic disadvantage, were related to child behaviour problems and to measures of parental stress and satisfaction.
Growing up with Down's Syndrome
- Author:
- SHEPPERDSON Billie
- Publisher:
- Cassell Educational
- Publication year:
- 1988
- Pagination:
- 216p., tables.
- Place of publication:
- London
Prepared for the future?: information to prepare families when a young person with a learning disability is leaving school or college
- Authors:
- MORGAN Hazel, DAVIES Jill
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2009
- Pagination:
- 33p.
- Place of publication:
- London
The Foundation for People with Learning Disabilities, in the second phase of its What Kind of future? project, has worked with young people who have Down’s syndrome. This booklet has been prepared on the basis of what the participants have said would be helpful. It provides information on: the role of family and friends; government support and initiatives; personalisation and person centred planning; access to care; further education and specialist colleges; employment opportunities, including voluntary work and supported employment; daytime, evening and weekend activities; friendships; short term breaks; moving from the family home and housing; health; support for carers; and how and where to complain in case of difficulties. Each section is written in non technical language and provides contact details, real life experiences and a checklist of what needs to be considered.
Families of 30-35 year olds with Down's Syndrome
- Author:
- CARR Janet
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(1), March 2005, pp.75-84.
- Publisher:
- Wiley
The families of a population sample of people with Down's syndrome (DS), and of their non-disabled controls, have been followed since early childhood, and the families have now been seen again as their sons and daughters reached age 30 and 35 years. A semi-structured interview schedule was used, including items from the handicaps, behaviour and skills schedule and from Holmes' thesis relating to leisure and social life and experience of services. Most parents, now in their late 60s, reported good health and a satisfactory social life. Mothers' mean stress scores were slightly higher in the Down's syndrome group than in the controls: possible explanations for this are discussed. Only one factor relating to the offspring with Down's syndrome could be shown to influence stress. Few adverse effects on the siblings were identified. The study is in agreement with others in showing families of older people with Down's syndrome to be well-adjusted and not unduly stressed.
Today and tomorrow: the report of the Growing Older with Learning Disabilities programme
- Author:
- THE FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES
- Publisher:
- Mental Health Foundation
- Publication year:
- 2002
- Pagination:
- 131p.
- Place of publication:
- London
Reports the findings and lessons from the Growing Older with Learning Disabilities (GOLD) programme. This UK-wide initiative aims to increase understanding of the concerns of older people with learning disabilities and older family carers and how services can help them realise their aspirations. Reporting the results of externally funded and in-house projects, spanning service development and research, the book focuses on inclusion, health, older family carers, where people are living, dementia and Down’s syndrome and terminal illness. The report includes a charter of rights for older people with learning disabilities and for older family carers. It also underlines the need for service providers to think today about how they will meet people’s age-related changing needs and support them, as they grow older, using person-centred planning.The report concludes with a series of recommendations for policy makers and planners, commissioners and providers.
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.