The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and/or mental health issues: What do carers say?

Journal of Intellectual Disabilities

Volumn 17, Issue 1, 2013, Pages 6-23

  James, Neil ^a  

^a UNIVERSITY OF GLAMORGAN   (United Kingdom)

Author keywords

additional needs; challenging behaviour; complex needs; family carers; intellectual disability; mental health; mental illness; support

Indexed keywords

ARTICLE; FAMILY COUNSELING; HUMAN; INTELLECTUAL IMPAIRMENT; INTERPERSONAL COMMUNICATION; MENTAL DISEASE; MENTAL HEALTH; PERSONAL EXPERIENCE; PERSONAL NEEDS; PRIORITY JOURNAL; SUPPORT GROUP;

CAREGIVERS; HUMANS; INTELLECTUAL DISABILITY; MENTAL HEALTH; SOCIAL SUPPORT;

EID: 84875910227     PISSN: 17446295     EISSN: 17446309     Source Type: Journal    
DOI: 10.1177/1744629512472610     Document Type: Article

References (44)

1. Baker B, Blacher J, Olsson M. Preschool children with and without developmental delay: behaviour problems, parents' optimism and well-being. Journal of Intellectual Disability Research. 2005 ; 49 (Part 8). 575-590
2. Bhaumik S, Hauck A, Watson JM. Quality matters: an audit of clinical effectiveness and quality of care in the community by the adult learning disability psychiatric service in Leicestershire, UK. British Journal of Developmental Disabilities. 2005 ; 15 (1). 73-81
3. Chia YH, Lunsky Y. Dual diagnosis and access to services. Journal of Developmental Disabilities. 2003 ; 10: 79-82
4. Davis K, Gavida-Payne S. The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability. 2009 ; 34 (2). 153-162
5. Deb S, Thomas M, Bright C. Mental disorder in adults with intellectual disability. 2: the rate of behaviour disorders among a community-based population aged between 16 and 64 years. Journal of Intellectual Disability Research. 2001 ; 45 (6). 506-514
6. Department of Health (DH). Carers at the Heart of 21st-Century Families and Communities: A Caring System on Your Side, a Life of Your Own. London, UK: Department of Health ; 2008.
7. Department of Health (DH) Valuing People Now: A New Three Year Strategy For People With Learning Disabilities. London, UK: Department of Health ; 2009.
8. Department of Health (DH) Recognised, Valued and Supported: Next Steps for the Carers Strategy. London, UK: Department of Health ; 2010.
9. Department of Health Social Services and Public Safety (DHSSPS) Caring for Carers: Recognising, Valuing and Supporting the Caring Role. Belfast, Ireland: Department of Health, Social Services and Public Safety ; 2006.
10. Douma JCH, Dekker MC, Koot HM. Supporting parents of youths with intellectual disabilities and psychopathology. Journal of Intellectual Disability Research. 2006 ; 50 (Part 8). 570-581
11. Duggan M Modernising the Social Model in Mental Health: A Discussion Paper. London, UK: Social Perspectives Network ; 2002.
12. Emerson E (2001) Challenging Behaviour: Analysis and Intervention in People with Severe Intellectual Disabilities. 2nd ed. Cambridge, UK: Cambridge University Press.
13. Faust H, Scior K. Mental health problems in young people with intellectual disabilities: the impact on parents. Journal of Applied Research in Intellectual Disabilities. 2008 ; 21: 414-424.
14. Fawcett B, Weber Z, Wilson S International Perspectives on Mental Health: Critical Issues Across the Lifespan. Basingstoke, UK: Palgrave MacMillan ; 2012.
15. Count Us In: The Report of the Committee of Inquiry into Meeting the Mental Health Needs of Young People with Learning Disabilities. London, UK: Foundation for People with Learning Disabilities ; 2002.
16. Making Us Count: Identifying and Improving Mental Health Support for Young People with Learning Disabilities. London, UK: Foundation for People with learning Disabilities ; 2005.
17. Fox L, Vaughn BJ, Wyatte ML, Dunlap G. We can't expect other people to understand: family perspectives on problem behavior. Exceptional Children. 2002 ; 68 (4). 437-450
18. Grant G (2005) Experiences of family care: bridging discontinuities over the life course. In: Grant G, Goward P, Richardson M and Ramcharan P (eds) Learning Disability: A Life Cycle Approach to Valuing People. Maidenhead, UK: Open University Press, pp. 222-242.
19. Hemmings C, Underwood L, Bouras N. What should community services provide for adults with psychosis and learning disabilities? A comparison of the views of service users, carers and professionals. Advances in Mental Health and Learning Disabilities. 2009 ; 3 (3). 22-27
20. Hudson A, Cameron C, Matthews J. The wide-scale implementation of a support program for parents of children with an intellectual disability and difficult behaviour. Journal of Intellectual and Developmental Disability. 2008 ; 33 (2). 117-126
21. Kenny K, McGilloway S. Caring for children with learning disabilities: an exploratory study of parental strain and coping. British Journal of Learning Disabilities. 2007 ; 35 (4). 221-228
22. Lecavalier L, Leone S, Wiltz J. The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research. 2006 ; 50 (3). 172-183
23. Maes B, Broekman TG, Dosen A, Nauts J. Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems. Journal of Intellectual Disability Research. 2003 ; 47 (6). 447-455
24. McConkey R (2011) Working outside the box: An evaluation of short breaks and intensive support services to families and disabled young people whose behaviour is severely challenging. Summary report, University of Ulster, UK.
25. McGill P, Cooper V, Honeyman G Developing Better Commissioning for Individuals with Behaviour That Challenges Services: A Scoping Exercise. Canterbury/Chatham, UK: Tizard Centre/Challenging Behaviour Foundation ; 2010.
26. McGill P, Papachristoforou E, Cooper V. Support for family carers of children and young people with developmental disabilities and challenging behaviour. Child: Care, Health & Development. 2006a ; 32 (2). 159-165
27. McGill P, Tennyson A, Cooper V. Parents whose children with learning disabilities and challenging behaviour attend 52-week residential schools: their perceptions of services received and expectations of the future. British Journal of Social Work. 2006b ; 36: 597-616
28. McIntyre LL, Blacher J, Baker BL. Behaviour/mental health problems in young adults with intellectual disability: the impact on families. Journal of Intellectual Disability Research. 2002 ; 46 (3). 239-249
29. Myrbakk E, von Tetzchner S. Psychiatric disorder and behavior problems in people with intellectual disability. Research in Developmental Disabilities. 2008 ; 29: 316-332
30. Oakes P (2000) Terminology. In: Gates B, Gear J and Wray J (eds) Behavioural Distress Concepts and Strategies. London, UK: Bailliere Tindall, pp. 31-48.
31. Priest H, Gibbs M Mental Health Care for People with Learning Disabilities. London, UK: Churchill Livingstone ; 2004.
32. Raghavan R, Patel P Learning Disabilities and Mental Health: A Nursing Perspective. Oxford, UK: Blackwell Publishing Ltd ; 2005.
33. Ryrie I, Norman I The Art and Science of Mental Health Nursing. Norman I Ryrie I, ed. Maidenhead, UK: Open University Press ; 2009: 22-42.
34. Caring Together: The Carers Strategy for Scotland 2010-2015. Edinburgh, UK: Scottish Executive ; 2010.
35. Twist S and Montgomery A (2010). Promoting health lifestyles: challenging behaviour. In: Grant G, Ramcharan P, Flynn M and Richardson M (eds) Learning Disability: A Life Cycle Approach. 2nd ed. Maidenhead, UK: Open University Press, pp. 233-246.
36. Unwin G, Deb S. Family caregiver uplift and burden: associations with aggressive behavior in adults with intellectual disability. Journal of Mental Health Research in Intellectual Disabilities. 2011 ; 4 (3). 186-205
37. Weiss J, Lunsky Y. Service utilization patterns in parents of youth and adults with intellectual disability who experienced behavioral crisis. Journal of Mental Health Research in Intellectual Disabilities. 2010 ; 3: 145-163
38. Carers' Strategy for Wales: Action Plan 2007. Cardiff, Wales, UK: Welsh Assembly Government ; 2007.
39. White N, Hastings RP. Social and professional support for parents of adolescents with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 2004 ; 17 (3). 181-190
40. Williams V, Heslop P. Mental health support needs of people with a learning difficulty: a medical or a social model?. Disability and Society. 2005 ; 20 (3). 231-245
41. Wodehouse G, McGill P. Support for family carers of children and young people with developmental disabilities and challenging behaviour: what stops it being helpful?. Journal of Intellectual Disability Research. 2009 ; 53 (7). 664-653
42. Wolverson M (2011) Challenging behaviour. In: Atherton HL and Crickmore DJ (eds) Learning Disabilities: Toward Inclusion. 6th ed. London, UK: Churchill Livingstone, pp. 319-338.
43. World Health Organization (2010) Mental health: strengthening our response fact sheet no. 220, September 2010.Available at: http://www.who.int/ mediacentre/factsheets/fs220/en/(accessed 14 February 2012).
44. Wycraft N (2009). Mental health and recognition of mental illness. In: Wycraft N (ed) An Introduction to Mental Health Nursing. Maidenhead, UK: Open University Press, pp. 35-50.