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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?
- Author:
- JAMES Neil
- Journal article citation:
- Journal of Intellectual Disabilities, 17(1), 2013, pp.6-23.
- Publisher:
- Sage
- Place of publication:
- London
Legislation, policy and strategies encourage services and professionals to work with carers in ways that complement and enhance their roles in order to maximize their capacity to care for their relative. Family carers therefore are recognized as a valuable resource. This article reports the findings of a review of research that explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from recent research studies, about their own support. Carers commonly reported that the support they want from services and professionals is the provision of clear, understandable information about their relative’s condition and treatment. Also, they want help to develop skills that enable them to manage in difficult situations, the provision of psychological support for themselves and a break from their caring role. They desire well-coordinated services as well as skilled and knowledgeable professionals. Recommendations made for the development of future research and practice.
Mental health needs of children and young people with learning disabilities
- Authors:
- RAGHAVAN Raghu, BERNARD Sarah H., McCARTHY Jane
- Publisher:
- Pavilion
- Publication year:
- 2011
- Place of publication:
- Brighton
Research has demonstrated that the co-occurrence of a mental health disorder is highly prevalent in children and young people with a learning disability. The overlap of challenging behaviour and mental health disorders along with the lack of understanding of the nature and manifestation of mental health disorders in this population produces a difficult and complex picture in terms of detection, diagnosis and therapeutic services. This book explores the issues around care of this group of service users, focusing on developing evidence based practice. The authors believe that through the consolidation of the evidence for assessment, intervention, service provision and safeguarding issues, professionals will be able to provide high quality personalised care for children and young people with learning disabilities who also have mental health needs. Topics covered include: epidemiology and aetiology; assessment; specific conditions; nursing perspectives and care planning; psychological interventions; pharmacological interventions; transition and social networks; ethnicity and diversity; service models; safeguarding children; and the Mental Health Act, capacity and consent. The handbook is primarily aimed at health and social care professionals and intended to provide them with a sound knowledge base for shaping and enhancing their practice along with the skills and confidence to improve the outcomes for these young people.
Facing the commissioning challenge: responding effectively to people whose behaviour is challenging
- Author:
- BERING Sandy
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 4(2), June 2010, pp.4-12.
- Publisher:
- Emerald
Securing better health and better care outcomes for people by effective use of public resources is at the heart of the commissioning agenda. Commissioning should ensure that the needs and wishes of people are well understood, and the market managed, so there are a range of local supports and provision available at a reasonable price. This is particularly important for people with intellectual disability whose behaviour is challenging, where effective clinically informed leadership is essential. Although models of good practice have been demonstrated for more than 20 years, making this happen on a wider scale remains the real challenge. Common wisdom about positive practice is not common practice in meeting identified needs. This paper aims to demystify the elements of effective commissioning roles, processes and the relationship of this work to positive outcomes in intellectual disability services, and to challenging behaviours. It highlights the case for a change in current common practice, explores some of the key barriers that must be addressed, and suggests key ways to achieve better outcomes.
Policy implications in Wales: current implications for Welsh people with learning disabilities and complex mental health needs including challenging behaviour
- Author:
- MATTHEWS Helen
- Journal article citation:
- Advances in Mental Health and Learning Disabilities, 1(1), March 2007, pp.37-41.
- Publisher:
- Emerald
This article provides an overview of the mechanisms for policy implementation in Wales to better meet the mental health needs of people with learning disabilities.
Providing care for adults with autistic spectrum disorders in learning disability services: needs-based or diagnosis-driven?
- Authors:
- BENNETT Heather E., WOOD Clare L., HARE Dougal Julian
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(1), March 2005, pp.57-64.
- Publisher:
- Wiley
This study assessed whether a Learning Disability Service should develop a specific autism strategy or provide services on a needs-led basis. An autism screening questionnaire had been used to identify individuals scoring above a cut-off who had (n = 9) or had not (n = 15) received a formal diagnosis of autism. A sample of low scorers (n = 22) were matched to these groups. Questionnaires assessing service provision, needs (disabilities and challenging behaviour), quality of life and knowledge of autism were sent to relatives of individuals living at home or key-workers for those living in supported housing. The high scoring groups had similar levels of needs. Those diagnosed with autism received more services in total while the high scoring group without autism diagnoses scored significantly lower on quality of life. Although these differences were not maintained when level of disability was taken into account, it appeared that there was some level of unmet need in the high scorers without autism diagnoses group. It appeared that resources should be targeted at identifying and addressing the specific needs of individuals presenting with autistic spectrum difficulties.
Challenging behaviour and communication difficulties
- Author:
- KEVAN Fiona
- Journal article citation:
- British Journal of Learning Disabilities, 31(2), June 2003, pp.75-80.
- Publisher:
- Wiley
Over the last 10 years as a speech and language therapist, working with adults with learning disabilities and challenging behaviour, the author has noted the tendency of services to focus their attention on the observable behaviours of the people with learning disabilities. Such observable behaviours include expressive communication behaviours. However, the 'hidden' phenomenon of receptive communication skill tends to be neglected. This article highlights the fact emphasis is often placed on the promotion of the expressive communication skills of the person with a learning disability and challenging behaviour: whether by direct skills teaching or via modification of the communication environment. The author suggests that we need to pay closer attention to the neglected and largely unmet need of receptive communication (comprehension) difficulties.
Falling through the gap
- Author:
- THOMPSON Audrey
- Journal article citation:
- Community Care, 30.3.00, 2000, pp.20-21.
- Publisher:
- Reed Business Information
Clients whose needs are not easy to pigeon-hole often get a bad deal from health and social services. Reports on one project in London that aims to provide a service to adults with learning difficulties who either slip through the gaps between learning difficulties and mental health services, or who appear not to be eligible for services but clearly have a need.
Challenging behaviour - what are the training needs?
- Author:
- -
- Journal article citation:
- Community Living, 6(4), April 1993, pp.22-23.
- Publisher:
- Hexagon Publishing
Brief notes summarising the findings of an English Nursing Board for Nursing, Midwifery and Health Visiting study into the education and training opportunities for staff working with people with learning difficulties who exhibit challenging behaviour and/or have an associated mental illness.
Mothers’ perspectives on the lived experience of children with intellectual disability and challenging behaviour
- Authors:
- KIERNAN Joann, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 23(2), 2019, pp.175-189.
- Publisher:
- Sage
- Place of publication:
- London
Children with intellectual disability and behavioural needs (challenging behaviour) are vulnerable to exclusion from services and communities. The situation is exacerbated by difficulties in accessing appropriate support and services to effectively meet the needs of children and carers. Family perspectives on the ‘lived experience’ of children can provide insight into how behavioural needs can affect their ability to access everyday experiences. Semi-structured interviews were conducted with mothers of children with intellectual disabilities and challenging behaviours. Phenomenological thematic analysis provided four key themes: finding our way; square services, round needs; behaviour touches everything and belonging. Experience of inclusion and exclusion was a central tenet of the lived experience. Recommendations call for timely proactive and bespoke interventions to identify and support children at risk of exclusion from communities. Early intervention and effective local provision will avoid increased burdens placed on families and services, in supporting children whose needs are currently unmet within child-centred provision. (Edited publisher abstract)
Urban adolescents with intellectual disability and challenging behaviour: costs and characteristics during transition to adult services
- Authors:
- BARRON Diana A., et al
- Journal article citation:
- Health and Social Care in the Community, 21(3), 2013, pp.283-292.
- Publisher:
- Wiley
Young persons with intellectual disabilities and challenging behaviour in transition usually have complex needs, which may not be served well within existing resources. In this article, we present a survey of all the young people, between 16 and 18 years of age with intellectual disabilities and challenging behaviour identified in one inner London borough. They were in transition to adult services at the time of the study (between 2006 and 2008). The objective was to examine their socio-demographic and clinical characteristics, pattern of service use and associated costs of care. An assessment toolkit was devised to measure the mental and physical health, challenging behaviour and service use of the sample. Instruments within the toolkit included the Strengths and Difficulties Questionnaire, challenging behaviour scale, Client Service Receipt Inventory (CSRI) and socio-demographic data form. Twenty-seven individuals in transition to adult services had challenging behaviour, 23 of whom had mental health diagnoses and 18 of whom had physical diagnoses. Severity of challenging behaviour did not correlate with cost of care. Informal care accounted for the highest proportion of the total cost of care (66%) with education being the second largest contributor at 22%. Evidence on transition outcomes for young people with complex needs and intellectual disabilities and associated costs is lacking. This article illustrates some of the relevant issues in this area. Further research is required to investigate these aspects and guide commissioning of appropriate services. (Publisher abstract)