SCIE research briefing 5: Short breaks (respite care) for children with learning disabilities

References

Click here for a full alphabetical list of the references.

(1) Mencap (2003) Breaking point: A report on caring without a break for children and adults with profound learning disabilities. Mencap. London.

UK short report, including parents' accounts of caring for a child with disabilities.

(2) Treneman M. Corkery A. Dowdney L. Hammond J. (1997) Respite-care needs - met and unmet: assessment of needs for children with disability. Developmental Medicine & Child Neurology 39 (8): 548-553. Abstract available.

UK qualitative study with questionnaires from 308 families on carer stress and use of respite care.

(3) Stalker K. (1992) An Overview of Short Term Care Services for People with Learning Difficulties. Social Services Research 41: 25-30.

UK service overview.

(4) Shared Care Network (2003) Too Disabled for Care?

UK report. Full text available

(5)Stalker K. (1988) Family-based respite care for children with severe learning difficulties: an evaluation of the Lothian scheme. Social Services Research 1 :1-10.

UK quantitative and qualitative research using semi-structured interviews (30 parents and 30 respite carers) and postal questionnaires (22 social care professionals).

(6) Hartrey L. Wells J.S.G. (2003) The meaning of respite care to mothers of children with learning disabilities: two Irish case studies. Journal of Psychiatric and Mental Health Nursing 10: 335-342. Abstract available.

Eire case study of two mothers who were primary carers including a written reflection and 24-hour diary.

(7) Kelleher J. (2001) Family Based Respite - the experience for children and adults with learning disabilities in St Michael's House. Irish Social Worker 19 (2-3): 19-21.

Eire case study of a new model of family-based respite.

(8) McNally S. Ben-Shlomo Y. Newman S. (1999) The effects of respite care on informal carers' well-being: a systematic review. Disability and Rehabilitation 21 (1): 1-14. Abstract available.

UK systematic review covering 29 studies on the effects of respite intervention.

(9) Prewett B. (1999) Short-Term Break, Long-Term Benefit: Using family-based short breaks for disabled children and adults. JUSSR/Community Care magazine. London. Abstract available.

UK qualitative study involving a questionnaire survey of 38 people with disabilities, both children and adults.

(10) McConkey R. Adams L. (2000) Matching short break services for children with learning disabilities to family needs and preferences. Child: Care, Health and Development 26 (5): 429-444. Abstract available.

Northern Ireland census of 476 short break users and structured questionnaire for 85 families together with discriminant analyses of children/families receiving each type of short break.

(11) Pollock N. Law M. King S. Rosenbaum P. (2001) Respite Services: A Critical Review of the Literature.

Canadian literature review.

(12) Duff G. (1992) Respite Choice. Nursing Times 88 (33): 65-66.

UK short policy and practice review.

(13) Department of Health (1989) Children Act. HMSO. London.

UK government legislation.

(14) Department of Health (2000) Carers and Disabled Children Act. HMSO. London.

UK government legislation.

(15) Children and Families. Department for Education and Skills.

This resource provides links to a range of government and non-government bodies and organisations. This was formerly Quality Protects.

(16) Choice Protects. Department for Education and Skills

Web pages on the government’s "Choice Protects" initiative.

(17) Department of Health (1998) Removing barriers for disabled children: inspection of services to disabled children and their families. Department of Health. London.

Central government report.

(18) Mog B. (1998) Disabled children directions for their future care. Department of Health. London.

Central government report.

(19) Hoare P. Harris M. Jackson P. Kerley S. (1998) A community survey of children with severe intellectual disability and their families: psychological adjustment, carer distress and the effect of respite care. Journal of Intellectual Disability Research 42 (3): 218-227. Abstract available.

Scottish cross-sectional interview study of 143 children with severe disability and an assessment of carer distress.

(20) Chadwick O. Beecham J. Piroth N. Bernard S. Taylor E. (2002) Respite Care for Children with Severe Intellectual Disability and their Families: Who Needs It? Who Receives It? Child and Adolescent Mental Health 7 (2): 66-72. Abstract available.

UK interview survey of 103 families about receipt and knowledge of short beak services.

(21) Robinson C. (1994) Making the Break from "Respite Care': A Keynote Review. British Journal of Learning Disabilities 22 (2): 42-45. Abstract available.

UK policy review.

(22) Carlin J. (2003) Moving and Handling Survey 2002. Shared Care Network.

UK report.

(23) Toocaram J.M. (1998) A holiday play scheme for children with learning disabilities. British Journal of Community Nursing 3 (7): 345-351.

UK descriptive study of a holiday play scheme for children with learning disabilities.

(24) Sinnett V. (1992) Children and families first in short term care. Nursing Standard 6 (49): 54-55.

UK service review.

(25) Minkes J. Robinson C. Weston C. (1994) Consulting the Children: interviews with children using residential respite care services. Disability & Society 9 (1): 47-57.

UK interview survey of 63 children with little or no speech of their views on 6 residential respite care services.

(26) Heslop P. (2003) Breaking News. Community Care 13-19 November: 36.

UK short policy and service review.

(27) Grant G. McGrath M. (1990) Need for Respite-Care Services for Caregivers of Persons With Mental Retardation. American Journal of Mental Retardation 94 (6): 638-648. Abstract available.

UK semi-structured interviews with 190 families including both adults and children.

(28) Mitchell W. Sloper P. (2002) Quality services for disabled children. Social Policy Research Unit (University of York). York.

UK consultation of 21 parents and 27 children on notions of a quality service and 14,500 questionnaires nominating services for inclusion on a website/directory. Full text available

(29) Stalker K. Robinson C. (1994) Parents' views of different respite care services. Mental Handicap Research 7 (2): 97-117.

UK semi-structured interview survey with 160 parents on their use of respite care.

(30) Redmond B. Richardson V. (2003) Just Getting on with it: Exploring the Service Needs of Mothers Who Care for Young Children with Severe/Profound and Life-Threatening Intellectual Disability. Journal of Applied Research in Intellectual Disabilities 16: 205-218.

Eire semi-structured interviews with 17 mothers of severely disabled children, with content analysis.

(31) Robinson C. Jackson P. Townsley R. (2001) Short breaks for families caring for a disabled child with complex health needs. Child & Family Social Work 6 (1): 67-75.

UK report of two studies - semi-structured interviews with 77 families and professionals, and 39 families (40 children). Full text available

(32) Rimmerman A. (1989) Provision of Respite Care for Children With Developmental Disabilities: Changes in Maternal Coping and Stress Over Time. Mental Retardation 27 (2): 99-103.

Israeli study of 32 mothers of children with developmental disabilities with a comparison group of 25 mothers for home-based respite services.

(33) Bruns E.J. Burchard J.D. (2000) Impact of Respite Care Services for Families With Children Experiencing Emotional and Behavioral Problems. Children's Services: Social Policy, Research, and Practice 3 (1): 39-61.

US controlled longitudinal study where there were 3 groups (73 families) including 33 families that received respite care and a control group of 28 families.

(34) Chan J.B. Sigafoos J. (2000) A Review of Child and Family Characteristics Related to the Use of Respite Care in Developmental Disability Services. Child & Youth Care Forum 29 (1): 27-37.

Australian literature review.

(35) Heslop P. Byford S. Weatherley H. (2003) Better Rewards: The costs and effectiveness of employing salaried support carers to reduce waiting lists for short-term care. Shared Care Network. Bristol. Abstract available.

UK survey of 10 providers of short break services, 73 families receiving a service, 33 families waiting to receive a service and 86 carers providing short break care.

(36) Tarleton B. Macaulay F. (2002) Better for the break? Barnardos. Basildon, Essex. Summary available.

Survey of nearly 300 families with autistic spectrum disorders and over 300 service providers.

(37) Hatton, C., Akram, Y., Shah, R., Robertson, J. & Emerson, E. (2002). Supporting South Asian families with a child with severe disabilities. Institute for Health Research, Lancaster University: Lancaster (Department of Health).

UK review.

(38) McGill P. (1996) Summer holiday respite provision for the families of children and young people with learning disabilities. Child: Care, Health and Development 22 (3): 203-212. Abstract available.

UK descriptive study with semi-structured interviews with 18 families using the scheme and 5 who did not.

(39) Flynn R. (2002) Short breaks: Providing better access and more choice for Black disabled children and their parents. The Policy Press. Bristol. Summary available.

UK postal survey of 24 short break schemes in England, interviews with nine children and young people and a review of UK literature.

(40) Gerard K. (1990) Determining the contribution of residential respite care to the quality of life of children with severe learning difficulties. Child: care, health and development 16: 177-188.

UK postal questionnaire survey of 3 residential homes and a users'-perspective review.

(41) Caldwell J. Heller T. (2003) Management of respite and personal assistance services in a consumer-directed family support programme. Journal of Intellectual Disability Research 47 (4/5): 352-366. Abstract available.

US cross-sectional surveys of 97 families on control of services and use of family for short breaks.

(42) Department of Health (2002) Quality Protects Research Briefings: 6. Meeting the needs of disabled children.

UK research briefing.

(43) Morris J. (1999) Space for Us - Finding out what disabled children and young people think about their placements. Newham Social Services. London. Abstract available.

UK interview survey of 26 children and young people.

(44) Marchant R. Jones M. Martyn M. (1999) Tomorrow I Go: What you told us about Dorset Road. Triangle. Brighton. Abstract available at:

UK interview survey with 26 children and young people which includes material for people with learning disabilities.

(45) Hastings R.P., Beck A. (2004). Practitioner Review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry and Allied Disciplines, 45 (8), 1138-1349.

This study reviews the evidence base for psychological interventions to remediate stress in parents caring for children with learning difficulties. Abstract available

(46) Callery P., MacDonald H. (2004). Different meanings of respite: a study of parents, nurses and social workers caring for children with complex needs. Child: Care, Health and Development, 30 (3), 279-289.

This study examines the views of carers and professionals regarding respite care. Abstract available

(47) McConkey R., Nixon T., Donaghy E., Mulhern D. (2004). The characteristics of children with a disability looked after away from home and their future service needs. British Journal of Social Work, 34 (4), 561-576.

This study offers a profile of children with disabilities and the care provided for them.