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The importance of identity and empowerment to teenagers with developmental co-ordination disorder
- Authors:
- LINGHAM R.P., et al
- Journal article citation:
- Child: Care, Health and Development, 40(3), 2014, pp.309-318.
- Publisher:
- Wiley
Aims: The aim of the current study was to gain an understanding of the experiences and aspirations of young people living with Developmental Coordination Disorder (DCD) in their own words. Methods: Eleven young people aged 11–16 years with a prior diagnosis of DCD were identified from child health records of two participating NHS trusts. The sample included seven boys and four girls, from different socio-economic backgrounds living in different parts of one large urban area in England. In depth one-to-one semi-structured interviews and subsequent follow-up small group interviews were carried out with the young people. Interviews were enhanced using participatory arts-based techniques. All interviews were recorded verbatim and transcribed. Narrative data were analysed using Lindseth's interpretive phenomenology. Results: The central theme of ‘We're all different’ described how the young person saw themselves and encompassed the formation of identity. Subthemes illustrated the attitude of the young people to their day to day lives, their difficulties and strategies used by the young people to overcome these difficulties in school and at home. The attitude of the school to difference, the presence of bullying, the accepting nature of the class, teachers and peers were vitally important. Areas of life that encouraged a positive sense of identity and worth included being part of a social network that gave the young people a sense of belonging, potentially one that valued differences as well as similarities. Conclusion: The current work highlights the need for services to adopt a model of DCD where the young person talks about what they can do and considers strategies of overcoming their difficulties. This has implications for education and future intervention strategies that focus on fostering psychological resilience and educational coping strategies rather than simply attempting to improve motor skills (Publisher abstract)
Fixing the system?: the experience of service users of the quasi-market in disability services in Australia
- Authors:
- SPALL Pam, McDONALD Catherine, ZETLIN Di
- Journal article citation:
- Health and Social Care in the Community, 13(1), January 2005, pp.56-63.
- Publisher:
- Wiley
A qualitative study involving semi-structured interviews with 31 people with disabilities and 32 carers in the state of Queensland, Australia, found that their experience of supportive service delivery had not improved despite reforms of the service delivery system driven by a version of the quasi-market model. Instead of delivering increased consumer choice and improved efficiency in service delivery, users experienced inadequate service supply, service cutbacks and increased emphasis on cost subsidisation and assessment processes. Additionally, few consumers felt that individualised funding arrangements had personally delivered the benefits which the quasi-market model and associated policy paradigm had indicated they should receive. For many consumers, the notion of consumer 'choice' around service provision was fictitious and they felt that any efficiency gains were at the agency level, largely at the consumers' cost. It is concluded that there appears to be no particular benefit to service users of quasi-market reforms, particularly in policy contexts where service delivery systems are historically under-funded.
Forging a new identity
- Author:
- VERNON Maxine
- Journal article citation:
- Community Care, 21.2.02, 2002, p.38.
- Publisher:
- Reed Business Information
Reports on how the winner of the Community Care awards 2001 disability category is encouraging disabled people to acquire new skills and to develop their self-respect where needed.
Face to face: an inquiry into the unmet information needs of disabled people
- Author:
- KNIGHT P. Cynthia
- Editor:
- KINRADE Derek.
- Publisher:
- National Information Forum
- Publication year:
- 2001
- Pagination:
- 45p.
- Place of publication:
- London
This report was based on a survey of disabled people in three London boroughs, Hackney, Southwark and Tower Hamlets. The survey aim was to find out disabled people's experiences of information provision by their local authority. In particular the survey looked at the provision of information as to what services a disabled person could receive from their local authority and how it was accessed, if at all. The three boroughs taking part in the survey selected, at random, disabled people from their registers and invited them to participate - 69 people responded in total. The sample covered a variety of disabilities, age ranges and ethnic backgrounds, of a sufficient spread to take account of the different communities in each borough. The main finding of the survey was that 61% of the participants felt that they did not receive information that met their needs and 86% of them had experienced difficulties in getting the necessary information. Most of them also said they that wouldn't know how to go about getting the information and 83% of them were worried by this situation. The main requirement identified by the participants was for clear, accurate and accessible information they could easily understand.
Ask the users
- Authors:
- CURRY Paul, CUPPLES Joan
- Journal article citation:
- Community Living, 15(1), 2001, pp.18-20.
- Publisher:
- Hexagon Publishing
Reports on an action research project involving day service users in Luton which showed the way for future vocational development.
Open to question
- Authors:
- SUTHERLAND Anne, CHESSON Rosemary
- Journal article citation:
- Health Service Journal, 21.4.94, 1994, pp.30-31.
- Publisher:
- Emap Healthcare
Surveys of disability are becoming increasingly common, and with an increasing emphasis on user participation they are likely to become more so. Looks at what they reveal; how representative they are; how do they influence policy and are they value for money.
Getting results: unlocking community care in partnership with disabled people
- Author:
- FIEDLER Barrie
- Publisher:
- King's Fund Centre/Prince of Wales' Advisory Group on Disability
- Publication year:
- 1993
- Pagination:
- 27p.
- Place of publication:
- London
Demonstrates how responsive services are being achieved and suggests key factors that produce results.
From control to choice
- Author:
- HEATON Tony
- Journal article citation:
- Community Care, 5.3.92, 1992, pp.22-23.
- Publisher:
- Reed Business Information
A service user comments critically on a Quality of Life seminar organised by the north west ADSS which was designed to help improve services for disabled people, and service users were invited to voice their opinions and be consulted by service providers.
"I feel as if I am the last person on earth" consulting with people with disabilities and their carers: a review of progress so far
- Author:
- BIRMINGHAM. Social Services Department
- Publisher:
- Birmingham. Social Services Department
- Publication year:
- 1990
- Pagination:
- 13p.
- Place of publication:
- Birmingham
Sets out the ways that the Birmingham Special Action Project has used consultation meetings to found user led approaches.
The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis
- Authors:
- REGAN Laurence, et al
- Journal article citation:
- Aging and Mental Health, 23(2), 2019, pp.149-157.
- Publisher:
- Taylor and Francis
Objective: Improving end-of-life care for people with neurodegenerative diseases is seen as a clinical priority. In order to do this, it is important to take into account the views expressed by people with these conditions on their experiences of this care. The purpose of this review was to provide a thematic synthesis of the views of adults with neurodegenerative diseases on end-of-life care. Methods: After a systematic search, 13 articles were included and thematic synthesis was used to collate and interpret findings. Results: Four analytical themes were identified; (1) Importance of autonomy and control; (2) Informed decision-making and the role of healthcare professionals; (3) Contextual factors in decision-making; (4) The pitfalls of care. Conclusion: Participants’ views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care. Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy. (Edited publisher abstract)