Abstract
The needs of carers of those discharged from inpatient forensic intellectual disability (ID) services are under researched. The role of the carer changes significantly during the transition from the person being cared for by the inpatient service, to a community setting. The carer may feel responsible for managing mental, physical and forensic needs. Therefore, carers of those with ID and forensic needs in the community require specialist support and understanding. Following the establishment of a new community ID team in Norfolk, the lack of guidelines for supporting this unique group of carers was noted. As such, a carers strategy with multiple components was initiated. This paper describes the implementation of a carers strategy to provide specific support to this cohort. It highlights the lack of research on this topic and the importance of working with external stakeholders.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Alexander, R., Hiremath, A., Chester, V., Green, F., Gunaratna, I., & Hoare, S. (2011). Evaluation of treatment outcomes from a medium secure unit for people with intellectual disability. Advances in Mental Health and Intellectual Disabilities, 5(1), 22–32. https://doi.org/10.5042/amhid.2011.0013
Carers Trust. (2023). The Triangle of Care – Carers Included: A guide to best practice in Mental Health Care in England.
Carers UK. (2023). Why we’re here. Retrieved June 21, 2023, from https://www.carersuk.org/about-us/why-were-here/
Carers UK. (2021). Carers’ health and experiences of primary care.
Caring Together Charity. (2021). Carer Friendly Tick Award - Health Toolkit to support applications.
Chemerynska, N., Arsuffi, L., & Holdsworth, E. (2021). Ascertaining the Needs of Carers of Forensic Psychiatric Inpatients through Their Experience of Navigating Mental Health Services: Guidance for Service Providers. Journal of Forensic Psychology Research and Practice, 21(3), 230–248. https://doi.org/10.1080/24732850.2020.1851546
Chester, V., Geach, N., & Morrissey, C. (2019). Treatment outcomes from forensic intellectual disability services: The perspectives of patients and their family/carers. Journal of Intellectual Disabilities, 23(4), 473–485. https://doi.org/10.1177/1744629517728841
Chester, V., James, N., Rogers, I., Grace, J., & Alexander, R. (2020). Family Experiences of Psychiatric Services for their Relative with Intellectual and Developmental Disabilities. In Oxford Textbook of the Psychiatry of Intellectual Disability (pp. 265–274). Oxford University Press. https://doi.org/10.1093/med/9780198794585.003.0025
Clibbens, N., Berzins, K., & Baker, J. (2019). Caregivers’ experiences of service transitions in adult mental health: An integrative qualitative synthesis. Health & Social Care in the Community, 27(5), e535–e548. https://doi.org/10.1111/hsc.12796
Devapriam, J., Rosenbach, A., & Alexander, R. (2015). In-patient services for people with intellectual disability and mental health or behavioural difficulties. BJPsych Advances, 21(2), 116–123. https://doi.org/10.1192/apt.bp.113.012153
Deville, J., Davies, H., Kane, R., Nelson, D., & Mansfield, P. (2019). Planning for the future: Exploring the experiences of older carers of adult children with a learning disability. British Journal of Learning Disabilities, 47(3), 208–214. https://doi.org/10.1111/BLD.12279
Gavois, H., Paulsson, G., & Fridlund, B. (2006). Mental health professional support in families with a member suffering from severe mental illness: a grounded theory model. Scandinavian Journal of Caring Sciences, 20(1), 102–109. https://doi.org/10.1111/J.1471-6712.2006.00380.X
Hammarström, L., Andreassen Devik, S., Häggström, M., & Hellzen, O. (2022). Meanings of carers’ lived experience of “regulating oneself” in forensic psychiatry. Https://Doi.Org/https://doi.org/10.1080/17482631.2022.2094088, 17(1). https://doi.org/10.1080/17482631.2022.2094088
Head, A. (2019). Making Positive Moves:Transforming Care and Beyond. Downs Syndrome Association Journal, 139(Spring/Summer), 41–42.
Hill, C., & Rose, J. (2009). Parenting stress in mothers of adults with an intellectual disability: parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 53(12), 969–980. https://doi.org/10.1111/j.1365-2788.2009.01207.x
Howard, R., Phipps, E., Clarbour, J., & Rayner, K. (2015). “I’d trust them if they understood learning disabilities” support needs of people with learning disabilities in the Criminal Justice System. Journal of Intellectual Disabilities and Offending Behaviour, 6(1), 4–14. https://doi.org/10.1108/JIDOB-05-2015-0011
Jacob, J., Lane, R., D’Souza, S., Cracknell, L., White, O., & Edbrooke-Childs, J. (2022). “If I Didn’t Have Them, I’m Not Sure How I Would Have Coped with Everything Myself”: Empowering and Supporting Parents/Carers of High-Risk Young People Assisted by Community Forensic CAMHS. Https://Doi.Org/https://doi.org/10.1080/14999013.2022.2060382, 22(1), 56–68. https://doi.org/10.1080/14999013.2022.2060382
James, N. (2016a). Family carers’ experience of the need for admission of their relative with an intellectual disability to an Assessment and Treatment Unit. Journal of Intellectual Disabilities, 20(1), 34–54. https://doi.org/10.1177/1744629515592073
James, N. (2016b). Supporting carers during assessment and treatment unit admissions. Advances in Mental Health and Intellectual Disabilities, 10(2), 116–127. https://doi.org/10.1108/AMHID-08-2015-0039
Larch, S. (2016). Autism, mental health and offending behaviour: a mother’s quest for healthcare. Advances in Autism, 2(4), 210–214. https://doi.org/10.1108/AIA-05-2016-0011/FULL/XML
Llewellyn, G., McConnell, D., Gething, L., Cant, R., & Kendig, H. (2010). Health status and coping strategies among older parent-carers of adults with intellectual disabilities in an Australian sample. Research in Developmental Disabilities, 31(6), 1176–1186. https://doi.org/10.1016/J.RIDD.2010.08.003
Maggs, C., & Laugharne, C. (1996). Relationship between elderly carers and the older adult with learning disabilities: an overview of the literature. Journal of Advanced Nursing, 23(2), 243–251. https://doi.org/10.1111/j.1365-2648.1996.tb02663.x
Naughton-Doe, R., Moran, N., Wakeman, E., Wilberforce, M., Bennett, L., & Webber, M. (2022). Interventions that support unpaid carers of adult mental health inpatients: a scoping review. Journal of Mental Health, 1–17. https://doi.org/10.1080/09638237.2022.2069702
Neece, C. L., Kraemer, B. R., & Blacher, J. (2009). Transition Satisfaction and Family Well Being Among Parents of Young Adults With Severe Intellectual Disability. Intellectual and Developmental Disabilities, 47(1), 31–43. https://doi.org/10.1352/2009.47:31-43
NHS England. (n.d.). Carer Facts – why investing in carers matters. Retrieved June 21, 2023, from https://www.england.nhs.uk/commissioning/comm-carers/carer-facts/
NHS England. (2018). Carer support and involvement in secure mental health services A Toolkit.
Office for National Statistics. (2023). Unpaid care, England and Wales: Census 2021.
Resch, J. A., Benz, M. R., & Elliott, T. R. (2012). Evaluating a dynamic process model of wellbeing for parents of children with disabilities: A multi-method analysis. Rehabilitation Psychology, 57(1), 61–72. https://doi.org/10.1037/a0027155
Richards, M., Doyle, M., & Cook, P. (2009). A literature review of family interventions for dual diagnosis: implications for forensic mental health services. The British Journal of Forensic Practice, 11(4), 39–49. https://doi.org/10.1108/14636646200900027
Seltzer, M. M., & Krauss, M. W. (1994). Aging parents with coresident adult children: the impact of lifelong caregiving. Life Course Perspectives on Adulthood and Old Age, 3–18.
Support in Mind Scotland (SIMS), & Forensic Network. (2014, May). Feeling stigmatised. https://www.researchunbound.org.uk/forensic-mental-health/experience-of-being-a-forensic-carer/feeling-stigmatised/
The National Institute for Health and Care Excellence (NICE). (2018). Learning disabilities and behaviour that challenges: service design and delivery.
Tingleff, E. B., Rowaert, S., Vinding, S., Vestphal, T. K., Wilson, R., & Gildberg, F. A. (2022). “It’s still our child”. A qualitative interview study with parent carers in forensic mental health. Archives of Psychiatric Nursing, 41, 124–131. https://doi.org/10.1016/J.APNU.2022.07.017
Walsh, P. N., Linehan, C., Hillery, J., Durkan, J., Emerson, E., Hatton, C., Robertson, J., Gregory, N., Kessissoglou, S., Hallam, A., Knapp, M., Jaerbrink, K., & Netten, A. (2001). Family Views of the Quality of Residential Supports. Journal of Applied Research in Intellectual Disabilities, 14, 292–309.
Acknowledgements
We would like to take this opportunity to thank the charity Caring Together, for inspiring the change and giving support and feedback throughout the process of establishing our carers strategy. A special thank you to the carers panel who assessed the Carers Friendly Tick Award, your complimentary feedback and working with us to provide the best for our carers has been invaluable.
Funding
The authors did not receive support from any organization for the submitted work.
Author information
Authors and Affiliations
Contributions
All authors contributed to the writing of this paper.
Corresponding author
Ethics declarations
Conflict of interests
All authors have no relevant financial or non-financial interests to disclose.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Freeman, C., Perez-Olivas, G., Patteril, E. et al. Supporting Carers Within a Forensic Intellectual Disability Community Team: The Development of a Carers Strategy. J. Psychosoc. Rehabil. Ment. Health 10, 435–441 (2023). https://doi.org/10.1007/s40737-023-00370-3
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40737-023-00370-3