Provider: NIHR Journals Library
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TY  - GEN
LB  - 1.
AU  - Marie Curie Cancer Care
TI  - Don’t Let Me Down: Ensuring a Good Transition for People with Palliative Care
CY  - London
PB  - Marie Curie Cancer Care
PY  - 2012
ER  - 
TY  - ELEC
LB  - 2.
AU  - Fraser, L
AU  - Miller, M
AU  - Aldridge, J
AU  - McKinney, PA
AU  - Parslow Roger, C
TI  - Prevalence of life-limiting and life-threatening conditions in young adults in England 2000–2010. Final report for together for short lives
PY  - 2013
UR  - www.togetherforshortlives.org.uk/wp-content/uploads/2018/01/ExRes-Life-Limiting-and-Life-Threatening-Conditions-in-Young-Adults-Lorna-Fraser-Report.pdf
M1  - 8 December 2020
ER  - 
TY  - ELEC
LB  - 3.
AU  - Noyes, J
AU  - Pritchard, A
AU  - Rees, S
AU  - Hastings, R
AU  - Jones, K
AU  - Mason, H
TI  - Bridging The Gap: Transition from Children’s to Adult Palliative Care
PY  - 2014
UR  - www.england.nhs.uk/midlands/wp-content/uploads/sites/46/2019/05/bridging-the-gap-between-children-adult-palliative-care.pdf
M1  - 26 November 2020
ER  - 
TY  - GEN
LB  - 4.
AU  - World Health Organization
TI  - Global Atlas of Palliative Care at the End of life
CY  - Geneva
PB  - World Health Organization
PY  - 2014
ER  - 
TY  - ELEC
LB  - 5.
AU  - Gatehouse, M
AU  - Ward, H
AU  - Holmes, L
TI  - Developing Definitions of Local Authority Services and Guidance for Future Development of the Children in Need Census
PY  - 2008
UR  - https://figshare.com/articles/online_resource/Developing_definitions_of_local_authority_services_and_guidance_for_future_development_of_the_Children_in_Need_Census/9580310
M1  - 31 July 2020
ER  - 
TY  - ELEC
LB  - 6.
AU  - Mooney, A
AU  - Owen, C
AU  - Statham, J
TI  - Disabled Children: Numbers, Characteristics and Local Service Provision
PY  - 2008
UR  - https://discovery.ucl.ac.uk/id/eprint/1482347/1/Numbers_and_characteristics_of_disabled_children.pdf
M1  - 26 November 2020
ER  - 
TY  - STAT
LB  - 7.
AU  - Great Britain
TI  - Equality Act 2010
CY  - London
PB  - The Stationery Office
PY  - 2010
ER  - 
TY  - GEN
LB  - 8.
AU  - NHS England
TI  - NHS Standard Contract for Specialised Rehabilitation for Patients with Highly Complex Needs (All Ages)
CY  - London
PB  - NHS England
PY  - 2014
ER  - 
TY  - ELEC
LB  - 9.
AU  - Marchant, R
AU  - Lefevre, M
AU  - Jones, M
AU  - Luckock, B
TI  - SCIE Knowledge Review 18: ‘Necessary Stuff’ – The Social Care Needs of Children with Complex Health Care Needs and Their Families
PY  - 2007
UR  - www.scie.org.uk/publications/knowledgereviews/kr18.asp
M1  - 8 December 2020
ER  - 
TY  - BOOK
LB  - 10.
AU  - Limbrick, P
TI  - TAC for the 21st Century: Nine Essays on Team Around The Child
PB  - Interconnections
PY  - 2009
ER  - 
TY  - JOUR
LB  - 11.
AU  - Rankin, J
AU  - Regan, S
TI  - Meeting complex needs: the future of social care meeting complex needs
J2  - Hous Care Support
PY  - 2004
VL  - 7
SP  - 4
EP  - 8
UR  - https://doi.org/10.1108/14608790200400016
ER  - 
TY  - ELEC
LB  - 12.
AU  - Devitt, K
AU  - Knighton, L
AU  - Lowe, K
TI  - Key Data on 16–25 Year-Olds Transitions, Disadvantage and Crime
PY  - 2009
UR  - https://researchportal.port.ac.uk/portal/files/1587567/Young_People_in_Focus_Young_Adults_Today_2009.pdf
M1  - 26 November 2020
ER  - 
TY  - GEN
LB  - 13.
AU  - Care Quality Commission
TI  - From the Pond into the Sea. Children’s Transition to Adult Health Services
CY  - London
PB  - Care Quality Commission
PY  - 2014
ER  - 
TY  - GEN
LB  - 14.
AU  - National Institute for Health and Care Excellence (NICE)
TI  - Transition from Children’s to Adults’ Services for Young People Using Health or Social Care Services (NG43)
CY  - London
PB  - NICE
PY  - 2016
ER  - 
TY  - JOUR
LB  - 15.
AU  - Fraser, LK
AU  - Lidstone, V
AU  - Miller, M
AU  - Aldridge, J
AU  - Norman, P
AU  - McKinney, PA
AU  - Parslow, RC
TI  - Patterns of diagnoses among children and young adults with life-limiting conditions: a secondary analysis of a national dataset
J2  - Palliat Med
PY  - 2014
VL  - 28
SP  - 513
EP  - 520
UR  - https://doi.org/10.1177/0269216314528743
ER  - 
TY  - JOUR
LB  - 16.
AU  - Remedios, C
AU  - Willenberg, L
AU  - Zordan, R
AU  - Murphy, A
AU  - Hessel, G
AU  - Philip, J
TI  - A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions
J2  - Palliat Med
PY  - 2015
VL  - 29
SP  - 223
EP  - 230
UR  - https://doi.org/10.1177/0269216314560008
ER  - 
TY  - GEN
LB  - 17.
AU  - Together for Short Lives
TI  - A Guide to the Development of Children’s Palliative Care Services
CY  - Bristol
PB  - Together for Short Lives
PY  - 2009
ER  - 
TY  - JOUR
LB  - 18.
AU  - Champagne, M
AU  - Mongeau, S
TI  - Effects of respite care services in a children’s hospice: the parents’ point of view
J2  - J Palliat Care
PY  - 2012
VL  - 28
SP  - 245
EP  - 251
UR  - https://doi.org/10.1177/082585971202800402
ER  - 
TY  - ELEC
LB  - 19.
AU  - Together for Short Lives
TI  - Children’s Palliative Care Definitions
UR  - www.togetherforshortlives.org.uk/get-support/supporting-you/family-resources/childrens-palliative-care-definitions/
M1  - 31 July 2020
ER  - 
TY  - ELEC
LB  - 20.
AU  - NHS Choices
TI  - Carers’ Breaks and Respite Care
PY  - 2019
UR  - www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-breaks-and-respite-care/
M1  - 31 July 2020
ER  - 
TY  - ELEC
LB  - 21.
AU  - World Health Organization
TI  - WHO Definition of Palliative Care
PY  - 2012
UR  - www.who.int/cancer/palliative/definition/en/
M1  - 28 February 2018
ER  - 
TY  - JOUR
LB  - 22.
AU  - Kirk, S
AU  - Fraser, C
TI  - Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: a qualitative study
J2  - Palliat Med
PY  - 2014
VL  - 28
SP  - 342
EP  - 352
UR  - https://doi.org/10.1177/0269216313507626
ER  - 
TY  - JOUR
LB  - 23.
AU  - Carter, B
AU  - Edwards, M
AU  - Hunt, A
TI  - ‘Being a presence’: the ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children.
J2  - J Child Health Care
PY  - 2015
VL  - 19
SP  - 304
EP  - 319
UR  - https://doi.org/10.1177/1367493513516391
ER  - 
TY  - JOUR
LB  - 24.
AU  - Doug, M
AU  - Adi, Y
AU  - Williams, J
AU  - Paul, M
AU  - Kelly, D
AU  - Petchey, R
AU  - Carter, YH
TI  - Transition to adult services for children and young people with palliative care needs: a systematic review
J2  - Arch Dis Child
PY  - 2011
VL  - 96
SP  - 78
EP  - 84
UR  - https://doi.org/10.1136/adc.2009.163931
ER  - 
TY  - JOUR
LB  - 25.
AU  - Fraser, LK
AU  - Aldridge, J
AU  - Manning, S
AU  - O’Leary, S
AU  - Miller, M
AU  - McCulloch, R
AU  - Childs, AM
TI  - Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom
J2  - Eur J Paediatr Neurol
PY  - 2011
VL  - 15
SP  - 326
EP  - 330
UR  - https://doi.org/10.1016/j.ejpn.2011.02.003
ER  - 
TY  - GEN
LB  - 26.
AU  - Department of Health and Social Care (DHSC)
TI  - Better Care, Better Lives. Improving Outcomes for Children, Young People and Their Families Living with Life-Limiting and Life-Threatening Conditions
CY  - London
PB  - DHSC
PY  - 2008
ER  - 
TY  - JOUR
LB  - 27.
AU  - Mitchell, TK
AU  - Knighting, K
AU  - O’Brien, MR
AU  - Jack, BA
TI  - Short break and emergency respite care: what options for young people with life-limiting conditions?
J2  - Int J Palliat Nurs
PY  - 2016
VL  - 22
SP  - 57
EP  - 65
UR  - https://doi.org/10.12968/ijpn.2016.22.2.57
ER  - 
TY  - CHAP
LB  - 28.
AU  - Kelly, D
AU  - Edwards, J
TI  - Palliative Care for Adolescents and Young Adults
A2  - Faull, C
A2  - Carter, YH
A2  - Daniels, L
T2  - Handbook of Palliative Care. 2nd edn
CY  - Hoboken, NJ
PB  - Wiley
PY  - 2005
SP  - 317
EP  - 330
UR  - https://doi.org/10.1002/9780470755877.ch16
ER  - 
TY  - RPRT
LB  - 29.
AU  - Knighting, K
AU  - Mitchell, T
AU  - O’Brien, MR
AU  - Jack, BA
TI  - Emergency Care Impact Assessment (ECIA) Project. Final Report
CY  - Ormskirk
PB  - Edge Hill University
PY  - 2014
ER  - 
TY  - ELEC
LB  - 30.
AU  - Together For Short Lives
TI  - Transition: A guide for Clinical Commissioning Groups
PY  - 2015
UR  - www.togetherforshortlives.org.uk/wp-content/uploads/2018/01/ProRes-Transition-A-Guide-for-CCGs.pdf
M1  - 31 July 2020
ER  - 
TY  - JOUR
LB  - 31.
AU  - Whiting, M
TI  - Support requirements of parents caring for a child with disability and complex health needs
J2  - Nurs Child Young People
PY  - 2014
VL  - 26
SP  - 24
EP  - 27
UR  - https://doi.org/10.7748/ncyp2014.05.26.4.24.e389
ER  - 
TY  - JOUR
LB  - 32.
AU  - Ling, J
TI  - Respite support for children with a life-limiting condition and their parents: a literature review
J2  - Int J Palliat Nurs
PY  - 2012
VL  - 18
SP  - 129
EP  - 134
UR  - https://doi.org/10.12968/ijpn.2012.18.3.129
ER  - 
TY  - JOUR
LB  - 33.
AU  - Robertson, J
AU  - Hatton, C
AU  - Wells, E
AU  - Collins, M
AU  - Langer, S
AU  - Welch, V
AU  - Emerson, E
TI  - The impacts of short break provision on families with a disabled child: an international literature review
J2  - Health Soc Care Community
PY  - 2011
VL  - 19
SP  - 337
EP  - 371
UR  - https://doi.org/10.1111/j.1365-2524.2010.00977.x
ER  - 
TY  - ELEC
LB  - 34.
AU  - National Collaboration for Integrated Care and Support
TI  - Integrated Care and Support: Our Shared Commitment
PY  - 2013
UR  - https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/198748/DEFINITIVE_FINAL_VERSION_Integrated_Care_and_Support_-_Our_Shared_Commitment_2013-05-13.pdf
M1  - 26 November 2020
ER  - 
TY  - ELEC
LB  - 35.
AU  - Marsh, S
AU  - Cameron, M
AU  - Duggan, M
AU  - Rodrigues, J
AU  - Eisenstadt, N
AU  - Iskander, R
AU  - Stone, J
TI  - Young People with Life-Limiting Conditions: Transition to Adulthood. ‘Small Numbers, Huge Needs, Cruel and Arbitrary Division of Services’. Executive Summary of Phase 1 Report for Marie Curie Cancer Care
PY  - 2011
UR  - www.mariecurie.org.uk/globalassets/media/documents/commissioning-our-services/past-initiatives/ypt/phase1_young-people-transition-exec-summary.pdf
M1  - 26 November 2020
ER  - 
TY  - ELEC
LB  - 36.
AU  - Bamford, C
AU  - Arksey, H
AU  - Poole, M
AU  - Kirkley, C
AU  - Hughes, J
AU  - Corner, L
AU  - Bond, J
TI  - Person- and Carer-Centred Respite Care for People with Dementia: Developing Methods of Evaluating the Effectiveness of Different Models. Report for the National Institute for Health Research Service Delivery and Organisation Programme
PY  - 2009
UR  - http://www.netscc.ac.uk/netscc/hsdr/files/project/SDO_FR_08-1511-113_V01.pdf
M1  - 26 November 2020
ER  - 
TY  - GEN
LB  - 37.
AU  - Department for Education and Skills and HM Treasury
TI  - Aiming High for Children: Supporting Families
CY  - London
PB  - Department for Education and Skills and HM Treasury
PY  - 2007
ER  - 
TY  - ELEC
LB  - 38.
AU  - Pinney, A
TI  - Understanding the Needs of Disabled Children with Complex Needs or life-Limiting Conditions: What Can We Learn From National Data?
PY  - 2017
UR  - https://councilfordisabledchildren.org.uk/sites/default/files/field/attachemnt/Data%20Report.pdf
M1  - 26 November 2020
ER  - 
TY  - GEN
LB  - 39.
AU  - Foundation for People with Learning Disabilities
TI  - Learning Disability Statistics: Effects of Being a Carer
CY  - London
PB  - Foundation for People with Learning Disabilities
PY  - 2014
ER  - 
TY  - JOUR
LB  - 40.
AU  - Malcolm, C
AU  - Forbat, L
AU  - Knighting, K
AU  - Kearney, N
TI  - Exploring the experiences and perspectives of families using a children’s hospice and professionals providing hospice care to identify future research priorities for children’s hospice care
J2  - Palliat Med
PY  - 2008
VL  - 22
SP  - 921
EP  - 928
UR  - https://doi.org/10.1177/0269216308098214
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TY  - JOUR
LB  - 41.
AU  - Knighting, K
AU  - Bray, L
AU  - Downing, J
AU  - Kirkcaldy, A
TI  - Children and adult hospice provision for young adults with life-limiting conditions: a UK survey
J2  - BMJ Support Palliat Care
PY  - 2017
VL  - 7
SP  - A94
EP  - A95
UR  - https://doi.org/10.1136/bmjspcare-2017-hospice.261
ER  - 
TY  - STAT
LB  - 42.
AU  - Great Britain
TI  - Children and Families Act 2014
CY  - London
PB  - The Stationery Office
PY  - 2014
ER  - 
TY  - STAT
LB  - 43.
AU  - Great Britain
TI  - Care Act 2014
CY  - London
PB  - The Stationery Office
PY  - 2014
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LB  - 44.
AU  - Pilkington, G
AU  - Knighting, K
AU  - Bray, L
AU  - Downing, J
AU  - Jack, BA
AU  - Maden, M
TI  - The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review
J2  - BMJ Open
PY  - 2019
VL  - 9
SP  - e030470
UR  - https://doi.org/10.1136/bmjopen-2019-030470
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AU  - Thomas, J
AU  - Sutclifee, K
AU  - Harden, A
AU  - Oakley, A
AU  - Oliver, S
AU  - Rees, R
TI  - Children and Healthy Eating: A Systematic Review of Barriers and Facilitators
CY  - London
PB  - EPPI-Centre, Social Science Research Unit, Institute of Education, University of London
PY  - 2003
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AU  - Whitaker, R
AU  - Hendry, M
AU  - Aslam, R
AU  - Booth, A
AU  - Carter, B
AU  - Charles, JM
TI  - Intervention Now to Eliminate Repeat Unintended Pregnancy in Teenagers (INTERUPT): a systematic review of intervention effectiveness and cost-effectiveness, and qualitative and realist synthesis of implementation factors and user engagement
J2  - Health Technol Assess
PY  - 2016
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UR  - https://doi.org/10.3310/hta20160
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AU  - Booth, A
TI  - Clear and present questions: formulating questions for evidence based practice
J2  - Library Hi Tech
PY  - 2006
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UR  - https://doi.org/10.1108/07378830610692127
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AU  - Booth, A
AU  - Harris, J
AU  - Croot, E
AU  - Springett, J
AU  - Campbell, F
AU  - Wilkins, E
TI  - Towards a methodology for cluster searching to provide conceptual and contextual “richness” for systematic reviews of complex interventions: case study (CLUSTER)
J2  - BMC Med Res Methodol
PY  - 2013
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UR  - https://doi.org/10.1186/1471-2288-13-118
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AU  - Hoffmann, TC
AU  - Glasziou, PP
AU  - Boutron, I
AU  - Milne, R
AU  - Perera, R
AU  - Moher, D
TI  - Better reporting of interventions: Template for Intervention Description and Replication (TIDieR) checklist and guide
J2  - BMJ
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AU  - Noyes, J
AU  - Hendry, M
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AU  - Lewin, S
AU  - Glenton, C
AU  - Garside, R
TI  - Current use was established and Cochrane guidance on selection of social theories for systematic reviews of complex interventions was developed
J2  - J Clin Epidemiol
PY  - 2016
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UR  - https://doi.org/10.1016/j.jclinepi.2015.12.009
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LB  - 51.
AU  - Anderson, LM
AU  - Petticrew, M
AU  - Rehfuess, E
AU  - Armstrong, R
AU  - Ueffing, E
AU  - Baker, P
TI  - Using logic models to capture complexity in systematic reviews
J2  - Res Synth Methods
PY  - 2011
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UR  - https://doi.org/10.1002/jrsm.32
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LB  - 52.
AU  - Kneale, D
AU  - Thomas, J
AU  - Harris, K
TI  - Developing and optimising the use of logic models in systematic reviews: exploring practice and good practice in the use of programme theory in reviews
J2  - PLOS ONE
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UR  - https://doi.org/10.1371/journal.pone.0142187
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AU  - Critical Appraisal Skills Programme
TI  - CASP Qualitative Checklist
CY  - Oxford
PB  - Critical Appraisal Skills Programme
PY  - 2018
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AU  - Bowen, GA
TI  - Document analysis as a qualitative research method
J2  - Qual Res
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UR  - https://doi.org/10.3316/QRJ0902027
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AU  - O’Leary, Z
TI  - The Essential Guide to Doing your Research Project
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CY  - Thousand Oaks, CA
PB  - Sage
PY  - 2014
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AU  - EPPI-Centre
TI  - The Evidence for Policy and Practice Information, Social Science Research Unit
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AU  - Oliver, S
AU  - Harden, A
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AU  - Shepher, J
AU  - Brunton, G
AU  - Garcia, J
TI  - An emerging framework for including different types of evidence in systematic reviews for public policy
J2  - Evaluation
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UR  - https://doi.org/10.1177/1356389005059383
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AU  - Lewin, S
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AU  - Munthe-Kaas, H
AU  - Carlsen, B
AU  - Colvin, CJ
AU  - Gülmezoglu, M
TI  - Using qualitative evidence in decision making for health and social interventions: an approach to assess confidence in findings from qualitative evidence syntheses (GRADE-CERQual)
J2  - PLOS Med
PY  - 2015
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AU  - Hutcheson, S
AU  - Maguire, H
AU  - White, C
TI  - Evaluation of a pilot service to help young people with life-limiting conditions transition from children’s palliative care services
J2  - Int J Palliat Nurs
PY  - 2018
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SP  - 322
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UR  - https://doi.org/10.12968/ijpn.2018.24.7.322
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AU  - Martin House Children’s Hospice
TI  - Supporting Children with Life-Limiting Conditions and Their Families – Research Examining Service Provision in Yorkshire and the Humber
CY  - Wetherby
PB  - Martin House Children’s Hospice
PY  - 2013
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TY  - JOUR
LB  - 61.
AU  - Young, L
AU  - Egdell, A
AU  - Swallow, V
TI  - Qualitative accounts of young-people, parents and staff involved with a purpose-designed, pilot short-break service for 18–24 year olds with life-limiting conditions
J2  - Child Youth Serv Rev
PY  - 2018
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UR  - https://doi.org/10.1016/j.childyouth.2018.01.016
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AU  - Dawson, S
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TI  - ‘Camp gives me hope’: exploring the therapeutic use of community for adults with cerebral palsy
J2  - Ther Recreation J
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AU  - Beresford, B
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TI  - My Life. Growing Up and Living with Ataxia-Telangiectasia: Young People’s and Young Adults’ Experiences
PY  - 2013
UR  - www.york.ac.uk/inst/spru/research/pdf/ATMyLife.pdf
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AU  - Young, L
AU  - Egdell, A
AU  - MacFadyen, A
AU  - Swallow, V
TI  - Small Service, Big Impact. Evaluation of a New Short Break Service for Young Adults with Life Limiting Conditions at St Oswald’s Hospice
CY  - Manchester
PB  - St Oswald’s Hospice and University of Manchester
PY  - 2013
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TY  - ELEC
LB  - 65.
AU  - Muscular Dystrophy Campaign
TI  - Give Us a Break: Hospice and Respite Care for Young Disabled Adults in Scotland
PY  - 2014
UR  - https://lx.iriss.org.uk/sites/default/files/resources/give_us_a_break.pdf
M1  - 26 November 2020
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LB  - 66.
AU  - Shared Care Scotland
TI  - Evaluation Report on Round Two of the Short Breaks Fund
CY  - Dunfermline
PB  - Shared Care Scotland
PY  - 2012
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TY  - JOUR
LB  - 67.
AU  - Knighting, K
AU  - Bray, L
AU  - Downing, J
AU  - Kirkcaldy, AJ
AU  - Mitchell, TK
AU  - O’Brien, MR
TI  - Meeting the needs of young adults with life-limiting conditions: a UK survey of current provision and future challenges for hospices [published online ahead of print May 06 2018]
J2  - J Adv Nurs
PY  - 2018
UR  - https://doi.org/10.1111/jan.13702
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LB  - 68.
AU  - Luzinat, KJ
AU  - Analytis, P
AU  - Hicks, AJ
AU  - Warren, N
AU  - Ponsford, JL
TI  - The experience of a recreational camp for families with a child or young person with acquired brain injury
J2  - Neuropsychol Rehabil
PY  - 2020
VL  - 30
SP  - 233
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UR  - https://doi.org/10.1080/09602011.2018.1461657
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TY  - THES
LB  - 69.
AU  - Stylianou, A
TI  - Mothers with Disabled Children in Cyprus: Experiences and Support
CY  - London
PB  - University College London
PY  - 2017
UR  - https://discovery.ucl.ac.uk/id/eprint/10023393/1/Stylianou_10023393_Thesis.pdf
Y2  - 31 July 2020
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