Active involvement of people with intellectual disabilities in health research - A structured literature review.

Accessible summary

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 This article synthesises current literature regarding ageing and service provision for people with an intellectual disability.

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 People with intellectual disability are living longer.

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 Services need to respond to the needs of older people with intellectual disability.





Summary

People with an intellectual disability are living longer, and the numbers continue to rise. Ireland has and is seeing a dramatic change in the age profile of clients and the support services they require. While Ireland had specifically trained nurses in intellectual disability, they predominately work in residential settings. This can be seen as been at odds with the philosophy of supporting people with intellectual disability live at home with their family and the primary care system. As the ageing population is rising, intellectual disability services need to proactively develop and respond to this changing age profile by reviewing and adjusting the way in which they deliver services, not only in terms of how services develop and respond to a changing age profile but also in terms of collaborative working across all health services.

Future Need of Ageing People with an Intellectual Disability in the Republic of Ireland: Lessons Learned from the Literature.

The aim of this article is to report findings from a study that asked carers for their views on a wide range of topics. Issues relevant to the current concerns of carers are reported here. A mixed method triangulated design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on 'current concerns'. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Issues of concern to carers included access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role.

'It terrifies me, the thought of the future': listening to the current concerns of informal carers of people with a learning disability.

Hospital emergency departments are not well prepared to meet the needs of individuals with intellectual disabilities. Negative experiences can be very traumatic, particularly when the emergency visit is because of a behavioural or psychiatric problem. A focus group study was conducted in 2005 in Toronto, Canada with four women with intellectual disabilities who had paid repeated visits to their local emergency department due to a psychiatric or behavioural crisis. These women spoke about not feeling respected, the trauma of being restrained physically or chemically, and about hospital staff not being comfortable working with women with intellectual disabilities. Clinical implications are discussed and recommendations are presented to improve the experience of women who require emergency services in the future.

The reported experience of four women with intellectual disabilities receiving emergency psychiatric services in Canada: a qualitative study.

This book has arisen primarily in response to the increasing concern
expressed about the perceived lack of ability in both students and newly
qualified staff nurses to perform clinical skills. This deficit has been largely
attributed to the advent of Project 2000 and the subsequent move of
nurse education into Higher Education. Innovations in nursing such as
the Nursing Process, Nursing Models and new methods of organizing
care delivery, each with their emphasis on providing individualized nursing
care, may also have exacerbated this problem. These initiatives have
largely resulted in the demise of procedure manuals as a source of reference
in many clinical areas. Consequently nurses and the increasing
number of health care workers in new roles such as cadet nurses, health
care assistants and generic ward practitioners no longer have an easily
accessible source of reference in the clinical arena. This is particularly
problematic when they are faced with undertaking a procedure for the
first time.
The intention of this book is to redress this deficit by:
1 outlining the elements of essential nursing procedures in a readily accessible
format
2 providing the rationale for the recommended actions
3 promoting evidence-based practice.
This book is unique in that it encourages the reader to keep a record of
achievement in relation to clinical skill competence. It also differs from
existing publications in that it is presented in a more readily accessible and
user-friendly format for the busy clinician. Further, this text may be of benefit
to lay persons undertaking the main carer role in the home setting.
The selection of skills for inclusion is based on extensive consultation
with experienced clinicians, students, clients and their significant others
as well as teachers of nursing. Each procedure has been carefully
researched to provide a contemporary foundation for practice. The book
is the first of a series which aims to promote professional and personal

Fundamental nursing skills

It is frequently asserted that the views of patients or service users should inform the structure and delivery of health and social care services. In the UK, patient participation, the expertise of service users and user involvement in the design and outcomes of research have been repeatedly emphasized as producing services which are more responsive, better coordinated and less stigmatizing. The NHS has highlighted the importance of involving service users in education and training. This article reports on user and carer views about learning disability nursing. Data were collected as part of a larger project considering the changing roles and education of learning disability nurses in England. The article concludes with a series of challenges for future educational and service development.

Learning Disability Nursing : User and Carer Perceptions

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Learning Disability Nursing : User and Carer Perceptions