Journal of Intellectual and Developmental Disability, 37(1), March 2012, pp.1-10.
Publisher:
Taylor and Francis
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.
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.
Subject terms:
learning disabilities, mothers, carers, health care;
Journal of Intellectual and Developmental Disability, 36(3), September 2011, pp.197-206.
Publisher:
Taylor and Francis
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.
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.
Subject terms:
learning disabilities, physical exercise, social inclusion, carers;
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.
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.
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.
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.
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.
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.
Subject terms:
learning disabilities, personalisation, short break care, carers;
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.
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.
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.
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.
Extended abstract:
Author
FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES.
Title
Learning with families: a training resource.
Publisher
Mental Health Foundation, 2003
Summary
This pack is described as 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.
Context
The White Paper Valuing people (2001) called for a new relationship between families and staff in learning disability services, proposing the involvement of family carers in staff training and development which, it is said, can help staff understand the experiences of families.
Contents
An introduction gives the aim as to enable staff to have a greater understanding of what it means for families to have a relative with a learning disability and how this can affect their relationships with professionals. It discusses the background, and explains that the resource consists of eight sections with handouts and overheads, a video presenting the experiences and views of four families to be used in conjunction with the written materials, and an evaluation form. How it was developed, how to use it, the number of participants (ideally 10-16), preparation for training, and delivering the training are outlined. A table maps the content of this publication to the learning outcomes of LDAF Unit 016: Contribute to supporting relationships - families, carers and friends. The resource has two core components.
Section A: 'Introduction to learning with families', introduces participants to the programme and enables them to discuss positive and negative aspects of family networks and consider the particular characteristics of families with a relative with a learning disability.
Section B, 'Life in the family home', should enable participants to gain an understanding of life in the family home by looking at the impact of having a family member with a learning disability, the difficulties which family carers can have in acknowledging their need for services and the needs of older family carers.
Further sections are: Section C aims to help participants understand some of the feelings family carers experience when it is time to plan ahead and how to promote better planning, support and decision-making; D should help participants understand how family carers and professionals can develop effective partnerships; E intends that participants should gain greater understanding of the feelings and emotions family carers experience when their relative with a learning disability leaves home, the preparations needed and adjustments which must be made following a move; F's aim is to bring understanding of the changes that affect family members when their relative with a learning disability moves from full-time education to different daytime activities and the importance of a satisfying way of life; G should help participants understand the difficulties family carers may have in acknowledging their need for breaks from caring, the benefits of short-term breaks for the person with a learning disability and their family carers, and that short-term breaks may serve as a preparation for the future; and H aims to help participants understand how family carers and professionals can communicate more effectively with one another to maximise available resources and experience.
Appendix 1 gives guidelines for those new to training, and Appendix 2 is the evaluation form.
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.
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.
Subject terms:
learning disabilities, support groups, young people, carers;
Journal of Applied Research in Intellectual Disabilities, 20(3), May 2007, pp.200-210.
Publisher:
Wiley
Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. A census interview survey was conducted in Hsin-Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL-BREF Taiwan-version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.
Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. A census interview survey was conducted in Hsin-Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL-BREF Taiwan-version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.
Subject terms:
learning disabilities, quality of life, carers, families;
Although carers have received more attention over the past decade, the rights of people with learning difficulties who are carers are still not recognised. The authors describe the campaign 'Who Cares for Us?' which aims to get this changed.
Although carers have received more attention over the past decade, the rights of people with learning difficulties who are carers are still not recognised. The authors describe the campaign 'Who Cares for Us?' which aims to get this changed.