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“LEARN”ing what is important to children and young people with intellectual disabilities when they are in hospital
- Authors:
- OULTON K., SELL D., GIBSON F.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(5), 2018, pp.792-803.
- Publisher:
- Wiley
Background: The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital‐related needs and experiences of CYP with intellectual disabilities. Method: An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting. Results: Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital: (i) little things make the biggest difference, (ii) eliminate unnecessary waiting, (iii) avoid boredom, (iv) routine and home comforts are key and (v) never assume. Conclusions: It is imperative that the present authors continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate. (Edited publisher abstract)
Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support
- Authors:
- DODD Karen, et al
- Journal article citation:
- Aging and Mental Health, 22(11), 2018, pp.1406-1415.
- Publisher:
- Taylor and Francis
Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counselling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. Conclusions: Recommendations for future research include examining the prevalence and nature of behavioural and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support. (Edited publisher abstract)
The learning disability improvement standards for NHS trusts
- Author:
- NHS IMPROVEMENT
- Publisher:
- NHS Improvement
- Publication year:
- 2018
- Pagination:
- 20
- Place of publication:
- London
Four standards designed to help NHS trusts measure the quality of care they provide to people with learning disabilities, autism or both. The standards have been developed with outcomes created by people and families, which state what they expect from the NHS. The four standards cover: respecting and protecting rights; inclusion and engagement; workforce; and learning disability services standard. The final standard is specifically for trusts that provide services commissioned exclusively for people with learning disabilities, autism or both. The standards are supplemented by improvement measures or actions that trusts are expected to take. The standards reflect the priorities described in national policies and programmes, in particular ‘Transforming care for people with learning disabilities – next steps’ and the ‘Learning Disabilities Mortality Review (LeDeR) programme.’ (Edited publisher abstract)
Domiciliary care: national minimum standards; regulations
- Author:
- GREAT BRITAIN. Department of Health
- Publisher:
- Stationery Office
- Publication year:
- 2003
- Pagination:
- 70p.
- Place of publication:
- Norwich
While broad in scope, these standards acknowledge the unique and complex needs of individuals, and the additional specific knowledge, and skills required in order to deliver a service that is tailored to the needs of each person. With the emphasis on caring for people with complex health and personal care needs living in their own home instead of in residential or nursing homes or long stay hospitals, the provision of personal domiciliary care services is evolving rapidly and reflects changes at the interface between health and social care. These standards will be applied to agencies providing personal care to the wide range of people who need care and support whilst living in their own home, including: older people, people with physical disabilities, people with sensory loss including dual sensory impairment, people with mental health problems, people with learning disabilities, children and their families, and personal or family carers.
Service framework for learning disability
- Author:
- NORTHERN IRELAND. Department of Health, Social Services and Public Safety
- Publisher:
- Northern Ireland. Department of Health, Social Services and Public Safety
- Publication year:
- 2015
- Pagination:
- 157
- Place of publication:
- Belfast
This Service framework for learning disabilities is one of a set of Service Frameworks which sets out standards for health and social care to be used by service users and carers, to help them understand the standard of care they can expect to receive in Northern Ireland. The Service Framework for Learning Disability aims to improve the health and wellbeing of people with a learning disability and their carers and families by promoting social inclusion, reducing inequalities in health and social wellbeing and improving the quality of health and social care services. The Framework sets standards in relation to: Safeguarding and Communication and Involvement in the Planning and Delivery of Services; Children and Young People; Entering Adulthood; Inclusion in Community Life; Meeting General Physical and Mental Health Needs; Meeting Complex Physical and Mental Health Needs; At Home in The Community; Ageing Well; and Palliative and End of Life Care. Each standard is accompanied by a statement on what the standard is intended to achieve. It also sets out the evidence base and rationale for the development of the standard and the performance indicators that will be used to measure that the standard during the three year period 2013 - 2016. The Framework has been developed with the involvement of people from all aspects of health and social care, including patients, users of services and their carers. (Edited publisher abstract)