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Journal article

Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability

Authors:
TAGGART Laurence, et al
Journal article citation:
Journal of Intellectual Disabilities, 16(3), September 2012, pp.217-234.
Publisher:
Sage
Place of publication:
London

Due to the increased life expectancy of people with intellectual disability, they are now more likely to be living with an ageing family carer. The aim of this study was to examine the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. A mixed methods design was employed. In stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers aged 60–94 years. In stage 2, 19 in-depth semi-structured interviews were undertaken with a sample of carers to explore a range of issues around future planning. Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. The main preference was for the person to remain in the family home, with either the family or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. Four main themes were identified around future planning: unremitting apprehension; the extent of planning; obstacles encountered; and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future.

Journal article

Difficulties of care-work reconciliation: employed and nonemployed mothers of children with intellectual disability

Authors:
CHOU Yueh-Ching, et al
Journal article citation:
Journal of Intellectual and Developmental Disability, 37(3), September 2012, pp.260-268.
Publisher:
Informa Healthcare

Compared to the normal, but temporary, demands of child care that most mothers face, caring for a child with learning disabilities may lead to a very different experience in care and work reconciliation.  This study investigated the differences in experience between these two groups. A survey was conducted in a county in Taiwan and 487 mothers, aged 65 or less. Except for the common ground of mothers' health and care demands, findings revealed that work flexibility and care support were important for employed mothers. In contrast, the success of reconciliation for non-employed mothers was determined by their individual characteristics such as age, marital status, and family income. The authors concluded that reconciliation policies for mothers with different employment statuses need to use different strategies. Implications for practice are discussed.

Journal article

Caring for a daughter with intellectual disabilities in managing menstruation: a mother's perspective

Authors:
CHOU Yueh-Ching, LU Zxy-Yann Jane
Journal article citation:
Journal of Intellectual and Developmental Disability, 37(1), March 2012, pp.1-10.
Publisher:
Informa Healthcare

Parents and carers of women with intellectual disability (ID) may encounter difficulties when dealing with menstruation management. The focus of research in this area has been largely on reducing family carer burden by preventing menstruation through the use of menstrual suppression medication or surgery. The aim of this qualitative study was to explore mothers' experiences and perceptions of managing their daughters' menstruation. Twelve Taiwanese mothers of 13 daughters with ID were interviewed to explore their experiences of providing help to their daughters with high support needs during menstruation. All the mothers reported that their daughters needed complete menstrual assistance. Support networks were limited and mothers developed their own strategies for managing their daughter's menstruation. Surgical hysterectomy or use of medication to cease or postpone menstrual bleeding was never considered. The financial cost of menstrual pads and nappies was significant. The article concludes that both an appropriate allowance for families involved in the menstrual care of women with ID and access to appropriate support are needed. More information and educational programmes need to be provided to relevant professionals and carers.

Journal article

An initial evaluation of a long-term, sustainable, integrated community-based physical activity program for adults with intellectual disability

Authors:
LANTE Kerrie A., et al
Journal article citation:
Journal of Intellectual and Developmental Disability, 36(3), September 2011, pp.197-206.
Publisher:
Informa Healthcare

The Creating a Sporting Change (CASC) programme is a joint project between RMIT university and the Bundoora Netball and Sports Centre which aims to provide people with an intellectual disability with the opportunity to participate in a physical exercise programme in a community-based setting. The aim of this paper is to explore the physical and psychosocial benefits gained by 2 individuals with mild ID who participated in this programme over a period of 2 years. The participants attended the CASC programme once a week, during which time they wore an accelerometer to collect data on their physical activity. In addition, on 2 separate occasions the participants wore an accelerometer for 7 consecutive days. To explore the psychosocial outcomes gained from participating in CASC, the participants and their caregivers were interviewed about their participation experiences. The findings showed that, across time, there was a decrease in the amount of light activity engaged in during sessions, with participants gradually increasing their moderate to vigorous activity. Psychosocial benefits, including meeting new people and gaining social acknowledgement were reported by the participants and their caregivers.

Book Full text available online for free

Joint position statement on carers with learning disabilities from the Princess Royal Trust for Carers, Crossroads Care, Mencap, the National Family Carer Network, Who Cares for Us? and Respond

Authors:
PRINCESS ROYAL TRUST FOR CARERS, CROSSROADS CARE
Publisher:
Princess Royal Trust for Carers
Publication year:
2010
Pagination:
4p.
Place of publication:
Woodford Green

This easy read joint position statement was created to help organisations who help carers with learning disabilities to work better together and to help other people to understand the lives of carers with learning disabilities. Using brief bullet points the statement describes what a carer with a learning disability is; explains why it is difficult to know how many carers with learning disabilities there are; what they want; how they could be better supported; and the organisations that currently support them.

Digital Media

Food for thought: people with learning disabilities and family carers share their experiences of healthy eating

Authors:
SCOTTISH CONSORTIUM FOR LEARNING DISABILITY, (Producer)
Publisher:
Scottish Consortium for Learning Disability
Publication year:
2011
Pagination:
DVD, booklet
Place of publication:
Glasgow

In this DVD people with learning disabilities and their family carers tell their story of healthy eating. Their stories show how some people and families have overcome barriers to healthy eating. As well as healthy eating, the DVD also covers enjoying cooking and eating, having choice and control about what you eat, where you eat and who you eat with. It shows that healthy eating works best when everyone works together.

Journal article

'Pick and mix': supporting carers to have a break

Author:
THOMPSON Alison
Journal article citation:
Community Connecting, 22, September 2009, pp.14-15.
Publisher:
Community Connecting

The short break services provided by Heritage Care to help both people with learning disabilities and their carers is presented. The article explains how the introduction of personal budgets (including Individualised Service Funds) has enabled the organisation to develop more customised and flexible services. The organisation provides both residential and outreach services.

Journal article

Going all inclusive?

Author:
DEWAR Helen
Journal article citation:
Viewpoint, March 2008, pp.16-19.
Publisher:
Mencap/Gateway

The author discusses holidays for people with learning disabilities. She discusses how accessible the holiday industry is for people with learning disabilities, the funding available for carers and the level of independence people with learning disabilities can expect when on holiday.

BookDigital Media

Learning with families: a training resource

Author:
FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES
Publisher:
Mental Health Foundation
Publication year:
2003
Pagination:
108p., videocassette
Place of publication:
London

The Foundation for People with Learning Disabilities has developed a training resource with a difference - family carers, who are also encouraged to deliver the training alongside professionals, developed the contents to train staff working in learning disability services.

Journal article Full text available online for free

When carers need caring

Author:
WILLIAMS Corin
Journal article citation:
Community Care, 7.6.07, 2007, pp.32-33.
Publisher:
Reed Business Information

When people with learning disabilities have care duties thrust upon them they can become isolated and distressed. The author looks at how they can be better supported and highlights the work of a national network set up by The Who Cares for Us? campaign.

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