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Doing research with children and young people who do not use speech for communication
- Authors:
- RABEE Paravaeh, SLOPER Patricia, BERESFORD Bryony
- Journal article citation:
- Children and Society, 19(5), November 2005, pp.385-396.
- Publisher:
- Wiley
Despite emphasis in policy on participation of disabled children,there is still know relatively little about how to obtain the views of disabled children with significant communication impairment and their views are often overlooked in planning and service provision. This article describes how the views of children who do not use speech were accessed in research aiming to identify disabled children and young people's priorities regarding outcomes of social care and support services. The main challenge was to develop a method that was reliable, non-threatening, enjoyable and relevant to individual children, as well as enabling children to think beyond their everyday life and express what they aspire to.
Deaf children and young people's experiences of using specialist mental health services
- Authors:
- GRECO Veronica, BERESFORD Bryony
- Journal article citation:
- Children and Society, 23(6), November 2009, pp.455-469.
- Publisher:
- Wiley
Deaf children have an increased prevalence of mental health problems compared with hearing children. Generic Child And Adolescent Mental Health Services do not have the skills or expertise to meet the mental health needs of this group of children. Three teams in England provide specialist mental health services for deaf children. This research explored children's experiences of using these services. Twenty-four deaf children participated in the study. Overall children valued and benefited from the service. The expertise of the staff and the presence of deaf clinicians were key to these positive experiences.
Decision-making around moving on from full-time education: the roles and experiences of parents of disabled young people with degenerative conditions
- Authors:
- MADDISON Jane, BERESFORD Bryony
- Journal article citation:
- Health and Social Care in the Community, 20(5), September 2012, pp.477-487.
- Publisher:
- Wiley
For disabled young people and their families, planning for and making decisions for post-school life can be a complex and difficult process. The aim of this study was to explore the parent’s role and experiences in the decision-making processes that take place within families when a disabled young person is moving on from full-time education. The data were collected by the Choice and Change Project, a longitudinal, qualitative study of choice-making by service users including young people with degenerative conditions. The subsample used in this paper was parents from 17 families who had discussed choices associated with leaving full-time education. The data were collected from parents during up to 3 semi-structured interviews conducted over a 30-month period. Parents differed in the extent to which they were actively involved in making choices about the ‘destination’ of their child. To some extent, the ability of the young person to make choices themselves influenced this. Parents who were assuming responsibility for making choices stressed the importance of having relevant information and felt professionals had a key role to play in supporting access to information. Parents used a number of criteria to guide their choice-making, including: distance from home; perceived quality of the environment and staff; and the young person’s responses to the setting. Much of the information needed to make a choice required a visit to all the possible options; support to achieve these visits was highly valued but not routinely provided. The study highlights the emotional journey and amount of work that parents take when making and assisting in these decisions.
The development of satisfaction with service-related choices for disabled young people with degenerative conditions: evidence from parents’ accounts
- Authors:
- MADDISON Jane, BERESFORD Bryony
- Journal article citation:
- Health and Social Care in the Community, 20(4), July 2012, pp.388-399.
- Publisher:
- Wiley
Satisfaction with service-related choices has received little attention beyond medical/health-related decisions. This study examined parents’ accounts of making service-related choices with, or on behalf of, a disabled son or daughter with a degenerative condition, focusing on factors and processes which contributed to parents’ satisfaction. Fourteen participants were recruited through two children’s hospices in England, who were interviewed over a two and a half-year period. Findings revealed that clarity of the desired outcome for the young person supported effective decision-making and led parents to feel confident that the best possible choice was being made. Evidence of desired outcomes being attained were used by parents to trade off any potentially negative consequences of a choice. These included the demands placed on parents’ personal, financial and practical resources, and the emotional impact incurred by significant changes such as the loss of the carer role. The authors concluded that practitioners had an important role in practical and emotional support for parents’ choice-making for, or with, their disabled son/daughter.
Working on well-being: researchers’ experiences of a participative approach to understanding the subjective well-being of disabled young people
- Author:
- BERESFORD Bryony
- Journal article citation:
- Children and Society, 26(3), May 2012, pp.234-240.
- Publisher:
- Wiley
This article reports on a researcher’s experience of working with a group of disabled young people over a 12-month period, during which perspectives of subjective well-being were explored. The setting was a Key Stage 4 local secondary special school in the United Kingdom. Methodological experiences, and particularly strategies which facilitated accessing young people's views, are described, such as the presence of a trusted ‘interpreter’, exploring topics over a number of meetings, and long-term relationships with the children. The paper then focuses on the challenges and dilemmas of taking a participative approach. These experiences are contextualised within wider debates on participative approaches in social research.
An evaluation of specialist mental health services for deaf children and young people
- Authors:
- BERESFORD Bryony, et al
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2008
- Pagination:
- 123p.
- Place of publication:
- York
Deaf children are at increased risk for mental health difficulties compared with their hearing peers. Access to high quality, effective mental health services is a key standard of the Children's National Service Framework. There is evidence, however, that deaf children are not accessing mental health support and that generic CAMHS do not have the necessary skills or expertise, such as being able to meet a child's communication needs, and being knowledgeable about deafness and the relationship between mental health and deafness. The first specialist mental health service for deaf children was established in London in 1991. In 2004, two further services (in the West Midlands and York) were funded to extend access. An innovative aspect of this network was the use of teleconferencing (known as the telelink) to facilitate case management and supervision between services, and to allow, where appropriate, children referred to the West Midlands and York services the opportunity to work with a clinical psychologist based in the London service who was fluent in British Sign Language (BSL). Data collected by the research project, supplemented by information collected routinely by the clinics, were used to evaluate the services.
Priorities and perceptions of disabled children and young people and their parents regarding outcomes from support services
- Authors:
- BERESFORD Bryony, RABIEE Parvaneh, SLOPER Patricia
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2007
- Pagination:
- 84p., bibliog.
- Place of publication:
- York
The Looked after Children (LAC) system provides an initial framework within which to investigate such outcomes: defining the seven dimensions on which progress should be assessed (health, education, identity, family and social relationships, social presentation, emotional and behavioural development, and self care skills). However, problems of its applicability to disabled children, whose development may be compromised in one or more areas by their impairment, have long been recognised. For example, how do we view the assessment of self care skills for a child with a degenerative condition, or the health record of a child with a life limiting illness? In addition, the LAC system does not address the issue of outcomes for parents/carers. Research has shown that parents with disabled children provide extra care, over and above that of ‘the reasonable parent’, and that parents with disabled children are particularly vulnerable to stress, which is often produced by trying to meet the extra demands of caring for the child without the necessary resources and support. Parental stress in turn impinges upon children’s development. Thus, in looking at outcomes of services for disabled children it is necessary to consider outcomes for both parents and child, identifying where these concur and where they differ. This study built on the LAC framework, and on work carried out here in SPRU on outcomes for disabled adults and their carers, to investigate the views of disabled children and young people and their parents on their desired outcomes from social care services. The results will inform the development of systems of outcome assessment applicable to disabled children and their families.
Priorities and perceptions of disabled children and young people and their parents regarding outcomes from support services: appendices
- Authors:
- BERESFORD Bryony, RABIEE Parvaneh, SLOPER Patricia
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2007
- Pagination:
- 196p., bibliog.
- Place of publication:
- York
The Looked after Children (LAC) system provides an initial framework within which to investigate such outcomes: defining the seven dimensions on which progress should be assessed (health, education, identity, family and social relationships, social presentation, emotional and behavioural development, and self care skills). However, problems of its applicability to disabled children, whose development may be compromised in one or more areas by their impairment, have long been recognised. For example, how do we view the assessment of self care skills for a child with a degenerative condition, or the health record of a child with a life limiting illness? In addition, the LAC system does not address the issue of outcomes for parents/carers. Research has shown that parents with disabled children provide extra care, over and above that of ‘the reasonable parent’, and that parents with disabled children are particularly vulnerable to stress, which is often produced by trying to meet the extra demands of caring for the child without the necessary resources and support. Parental stress in turn impinges upon children’s development. Thus, in looking at outcomes of services for disabled children it is necessary to consider outcomes for both parents and child, identifying where these concur and where they differ. This study built on the LAC framework, and on work carried out here in SPRU on outcomes for disabled adults and their carers, to investigate the views of disabled children and young people and their parents on their desired outcomes from social care services. The results will inform the development of systems of outcome assessment applicable to disabled children and their families.
Desired outcomes for children and adolescents with autistic spectrum disorders
- Authors:
- BERESFORD Bryony, et al
- Journal article citation:
- Children and Society, 21(1), January 2007, pp.4-16.
- Publisher:
- Wiley
Within children's services, frameworks for assessing outcomes have been developed in the absence of consultation with children with autistic spectrum disorders and their parents. The research reported here worked with parents, other key adults and children with autistic spectrum disorders to identify desired outcomes. It found similarities with non-autistic children in terms of the broad types of outcomes desired. However, the presence of autism meant either new or different sorts of outcomes were reported. Implications in terms of the ways outcomes for autistic children are defined and measured, and the role of services in achieving outcomes is discussed.
Transition to adult services and adulthood for young people with autistic spectrum conditions: summary
- Authors:
- BERESFORD Bryony, et al
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2013
- Pagination:
- 4p.
- Place of publication:
- York
Many people with autistic spectrum conditions (ASC) are not realising their full potential in adulthood. Access to transition support and appropriate services within the adult sector are key issues. There have been concerns that young adults with a diagnosis of autism but with no learning difficulties (i.e. those with 'high functioning autism' (HFA) or Asperger's syndrome (AS)), whilst not eligible for support from adult social care, do have significant support needs. The aim of this study was to explore the ways in which young adults with HFA or AS are supported over the transition period. This mixed-method study was located in 5 research sites. It sought the views of young adults with HFA and AS, their parents, and practitioners, ranging from strategic/managerial to front line staff. Qualitative and quantitative data, including data on costs, was collected. This research summary reports on the findings and implications of this study. The findings cover the following areas: the transition pathways and planning for leaving school; experiences of further education; planning for leaving college; the lack of post-education options; experiences of employment for young people and young adults with HFA and AS; support for young adults with HFA and AS; moving from the family home and independent living; and the role of parents.