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The changing face of the ‘good mother’: trends in research into families with a child with intellectual disability, and some concerns
- Author:
- KNIGHT Kathryn
- Journal article citation:
- Disability and Society, 28(5), 2013, pp.660-673.
- Publisher:
- Taylor and Francis
This article reviews changing perspectives in recent social science research into families of children with intellectual disability. These latest trends emphasise family resilience, adaptation, and transformation, with the focus predominantly on mothers and their ability to psychologically adjust to their caring challenges. A concern is that by concentrating on the adaptive strategies of mothers, researchers risk minimising the socio-political dimensions of this experience. The theme of the ‘good mother’ figures strongly in this research, linked to the limiting socio-cultural narratives available to mothers of children with intellectual disability that, it is argued, may condone their continuing marginalisation. (Publisher abstract)
Thinking ahead: a planning guide for families
- Author:
- TOWERS Christine
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2013
- Pagination:
- 140
- Place of publication:
- London
This guide offers ideas for how different people can help parents, and contribute to thinking and planning for the future of their son or daughter with learning disabilities..People with learning disabilities need support to shape their future and to be central to any planning. People working in local authorities and voluntary organisations have a role to play in supporting families through discussions, providing information and supporting change. The nine sections of the guide look at different aspects of thinking about preparing for the future: making decisions; making ploans for the future; building friendships and support networks; talking about difficult subjects; making financial plans; housing and support; making a plan for emergencies; keeping an eye on things to help make a relative's future settled and secure; and making a plan for the future. The guide includes templates to help the user with these tasks. (Edited publisher abstract)
Commentary on “Growing older together: ageing and people with learning disabilities and their family carers”
- Author:
- THOMPSON David
- Journal article citation:
- Tizard Learning Disability Review, 18(3), 2013, pp.120-123.
- Publisher:
- Emerald
This commentary aims to support Carol Walker and Cally Ward's paper by directing readers to work which could guide their practice with older people with learning disabilities and ageing family carers. It reviews selected initiatives to support older people with learning disabilities and their family carers over the past decade. Examples from the author's personal contacts are also used to illustrate the discussion. (Edited publisher abstract)
Growing older together: ageing and people with learning disabilities and their family carers
- Authors:
- WALKER Carol, WARD Cally
- Journal article citation:
- Tizard Learning Disability Review, 18(3), 2013, pp.112-119.
- Publisher:
- Emerald
This article explores the new challenge posed by the first generations of people with learning disabilities who are now living into older age in significant numbers. Most are living with family carers, who are themselves ageing. This represents a major transition in people's lives and one to which services must respond if a normal life event is not to be turned into a crisis. The article draws on the work of the authors for over a decade in this field. It examines the implications for both the older people themselves and for the ageing family carers with whom the majority live and of current government policy in social care and welfare benefits for this very vulnerable group. Learning disabled people are likely to experience the age discrimination common in much older people provision and practice and the caring relationship is undermined in the short and long term. Evidence on the extension of personalisation indicates that it presents very considerable challenges for this group of families. More information is needed on this growing population. More preventative support is needed to sustain the caring relationship while the family is living together, to support families to plan for the future, and to provide support when the caring relationship breaks down. (Edited publisher abstract)
Thinking ahead: improving support for people with learning disabilities and their families to plan for the future
- Author:
- TOWERS Christine
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2013
- Pagination:
- 28
- Place of publication:
- London
In the next 20 years, the number of people with learning disabilities aged 65+ is predicted to double. The greatest increase in life expectancy will be in people with mild learning disabilities who will have a comparable life expectancy with those in the general population of a similar socio-economic group. Therefore, families with people with learning disabilities will need to plan for their future care. The Thinking Ahead project aims to raise awareness about these concerns with policy-makers, local authority managers in social care and housing, carers’ organisations and more widely in the community. This report presents the findings of a survey about families' level of worry about the future, and how much help they have had in planning for a future when they will not around to support or care for a son or daughter with learning disabilities. The report also outlines findings from workshops and the development of a planning guide and its content. It recommends that policy and guidance on supporting people with learning disabilities and their families need to include statements on the importance of planning for the future, with requirements for local services to have a clear system to ensure future plans are developed. (Original abstract)
Family voices: life for family carers of people with intellectual disabilities in Ireland
- Authors:
- CHADWICK Darren D., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(2), 2013, pp.119-132.
- Publisher:
- Wiley
Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. The qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support. Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions. (Edited publisher abstract)
Living with a child whose behaviour is described as challenging
- Authors:
- DAVIES Kerri, HONEYMAN Gemma
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 7(2), 2013, pp.117-123.
- Publisher:
- Emerald
Families of those with intellectual disabilities and challenging behaviour often do not receive the practical support, training and information they need. As a result living with a child with behaviour described as challenging can be a profoundly hard and isolating experience. This paper aims to discuss the impact of challenging behaviour on families who have a child with intellectual disabilities. The experiences of three families are used to highlight the impact of challenging behaviour and this is supported by existing literature. Difficulties families experience include physical and mental health problems, sleep disturbance, social isolation, financial hardship and unemployment. Strategies families use to overcome difficulties are explored including seeking information and practical support and building family resilience. Positive aspects of living with a child whose behaviour is described as challenging is a topic that is often neglected in the academic literature, but caring can result in becoming a stronger family unit, increased personal growth and forming new friendships. The paper concludes with practical implications for professionals supporting families who live with a child whose behaviour is described as challenging. Families need information, training and practical support to fulfil their caring role effectively while maintaining the wellbeing of the family unit. The paper stresses that all have a role to play in supporting families, all can make a positive difference, and that people must be more proactive in identifying and meeting the needs of families. (Publisher abstract)
Experiencing multiple family groups in a Chinese context: the clients' perception of its helpful and unhelpful impact
- Authors:
- MA Joyce L.C., WAN Erica S.F., WONG M.C. Mooly
- Journal article citation:
- Journal of Social Work Practice, 27(1), 2013, pp.47-62.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
In Hong Kong, the knowledge of multiple family groups (MFGs) among social workers has been limited, in particular, in adapting MFG activities to a Chinese context. In this paper, we describe our experience of employing this group approach to assist Chinese parents who are taking care of children with special needs; state the challenges of implementing it and report the families' perception of helpful and unhelpful aspects of the MFG experience. In the perspective of the parents, two activities, namely preparing a joint meal and surrogate parenting have proven efficacious for parents to understand their child's strengths and explore alternate ways of parenting. (Publisher abstract)
Goodies and baddies: equivocal thoughts about families using an autoethnographic approach to explore some tensions between service providers and families of people with learning disabilities
- Author:
- DUMBLETON Sue
- Journal article citation:
- Ethics and Social Welfare, 7(3), 2013, pp.282-292.
- Publisher:
- Taylor and Francis
- Place of publication:
- Abingdon
This paper will explore the power of history in affecting contemporary caring practice. Drawing on the author's personal experience as a social worker in Scotland, researcher and parent of a daughter with learning disabilities, the article will consider the ways in which the experience of (and to an extent, nostalgia for) the ‘heady days’ of de-institutionalisation continues to influence staff perceptions about their work. In doing so, this article will critique normative notions of choice and control that are at the heart of current moves towards self-directed support and personalised services. The author contends that staff who support people who have learning disabilities need something with which to compare and validate their practice. In the 1980s the hospitals were easily identifiable as something negative with which practice ‘in the community’ could be compared. In the twenty-first century the need for a comparator is still there, but the hospitals and many of their associated structures such as Adult Training Centres have gone. The paper argues that the family can be a contemporary structure against which current practice can be measured. (Edited publisher abstract)
‘I hope he goes first’: exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues?
- Author:
- BIBBY Rita
- Journal article citation:
- British Journal of Learning Disabilities, 41(2), 2013, pp.94-105.
- Publisher:
- Wiley
The key findings from a literature review on future planning for adults with a learning disability who live with older parents and carers are presented. It is suggested that the presence of a plan for the future, formulated at a time of stability and in advance of any crisis, may lead to improved outcomes for this next phase of life. However, the take-up rate for future planning remains poor. This literature review seeks to offer an explanation for this through identifying the barriers to future planning as experienced by people with a learning disability and their older carers. The evidence suggests that there are ten key barriers to engagement in future planning. Consideration is given to each of these in turn, and a common thread is identified, that of the quality of the relationships between the families and the professionals who they come into contact with. Gaps in the research are considered, and the need for further work identified to reflect the views of black and minority ethnic families and so-called hidden families who are not known to statutory services. Also highlighted is the lack of participation in the research of those people with more severe disabilities who use alternative methods of communication. (Edited publisher abstract)