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Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

Being a family carer can be rewarding but can also lead to mental and physical exhaustion as well as feelings of social exclusion and isolation. Research has shown that the use of the Internet and online forums can provide an immediate place to find information and reassurance and that forum use can be an empathetic place to share experiences and seek emotional support. This article details a systematic literature search of research on carers of people with intellectual disabilities and/or autism using the Internet.

Mon, 10/07/2019 - 10:44

The Novel Use of Life Grids in a Phenomenological Study of Family Carers of People With Profound Intellectual and Multiple Disabilities and Dysphagia

Life grids have been used in qualitative studies for the last two decades. They provide an activity which researcher and participant can focus their attention on, help build rapport, and reduce the control the researcher may hold within a session. Here we describe the novel use of life grids at the end of a data collection phase. Used in this previously unreported way, life grids assisted the closure of the data collection phase by summarizing the data collection and marking departure from the field.

Mon, 06/10/2019 - 15:37

Exploring family members' experiences of the Assessment and Treatment Unit supporting their relative

Background Learning disability services must include the people who use them (individuals and their families/carers) in service commissioning, planning and delivery (Department of Health 2012. Transforming care: A national response to Winterbourne View Hospital. Department of Health review: Final report). One group of important stakeholders in learning disability services are the family members and carers of people with a learning disability.

Wed, 05/15/2019 - 10:22

Growth of Shared Lives placements slows

Umbrella body Shared Lives Plus calls for national awareness raising campaign to help boost carer numbers. 

Tue, 05/14/2019 - 15:40

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers.

Wed, 04/03/2019 - 12:21

Family Matters: Counting Families In

This report seeks to highlight the perspectives of family carers within the development of a national strategy for people with learning disabilities. The report represents a synthesis of a broad range of views, collected through consultation workshops, correspondence, conversations with family carers, and a review of the relevant  literature. 

Mon, 09/10/2018 - 17:51

Enabling future care

Little attention has been paid to the immense struggles facing disabled people and their caregivers as they try to plan their long-term futures. This book sets out practical ways to maximise future care options for such community care user groups. It focuses on the priorities of older caregivers and people with learning disabilities to give numerous suggestions for increasing control people have over their affairs and links these to central legislation and entitlement issues.

Thu, 07/20/2017 - 15:24

A 10-year plan for quality living for people with disabilities and their carers

Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous ‘Futures Planning’ projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security.

Thu, 07/20/2017 - 15:24

People with learning disabilities, carers and care workers awareness of health risks and implications for primary care

Background. People with learning disabilities have become increasingly exposed to health risk with the move to community living. Yet, health promotion is poorly developed with a heavy reliance on primary care.

Objectives. To elicit the perceptions of people with learning disabilities, carers and care workers regarding risk factors associated with cardiac disease.

Thu, 07/20/2017 - 15:23

Methodological issues in inclusive intellectual disability research: a health promotion needs assessment of people attending Irish disability services

Background  This paper describes a novel combination of inclusive methods to evaluate health and health promotion needs of service users (clients) with intellectual disability. Sixty centres provide disability services to over 900 clients with intellectual disability in the East Coast Area Health Board region of Ireland (population approximately 325 000). This is the first known triangulated large-scale approach to inclusive needs assessment of clients using regional disability services in Ireland.

Thu, 07/20/2017 - 15:23

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