English government policy advocates providing greater choice-making opportunities for service users and their families. However, there is a gap in our knowledge about the role family, especially parents, and also friends play in the choice-making processes of disabled young people. Drawing on data from an English longitudinal study, this article begins to address this gap by exploring disabled
(Publisher abstract)
English government policy advocates providing greater choice-making opportunities for service users and their families. However, there is a gap in our knowledge about the role family, especially parents, and also friends play in the choice-making processes of disabled young people. Drawing on data from an English longitudinal study, this article begins to address this gap by exploring disabled young people's shared choice-making with parents and peers. Using qualitative data from 27 interviews with disabled young people with degenerative conditions, it demonstrates that young people want to participate in making choices about their own lives but choices are often made with other people, especially parents and peers. Processes of choice-making are diverse. Parents and/or peers are involved at different stages and in varying degrees with young people depending on personal circumstances. For example, circumstances such as young people's age and experience and the type of choice and its perceived seriousness. Recognising this complexity and the importance of a holistic approach to choice-making, the article concludes with some practice suggestions.
(Publisher abstract)
Subject terms:
disabilities, young people, decision making, families, family support, user views, support groups;
... similar decisions were framed in different ways by different families; while families wished to be primarily responsible for decision making, professional support was valued particularly in relation to accessing information and in implementing the decision; young people particularly valued the support of other young people with similar conditions. Implications for professionals are summarised.
This research briefing reports on a survey of 27 disabled young people with degenerative conditions, including 14 with additional learning disabilities, and their parents. Participants were interviewed up to three times over a three year period, to explore recent experiences of making choices about services, including: the information and advice sought, options considered, factors taken into account, the roles played by family, friends and professionals, and the outcomes of the decisions over time. Interviews with young people with learning disabilities or with impaired communication were facilitated by Talking Mats®, a visual communication system. Key findings were that decision making was shared between young people and parents, depending on the young person’s level of understanding; similar decisions were framed in different ways by different families; while families wished to be primarily responsible for decision making, professional support was valued particularly in relation to accessing information and in implementing the decision; young people particularly valued the support of other young people with similar conditions. Implications for professionals are summarised.
Subject terms:
learning disabilities, medical treatment, long term conditions, longitudinal studies, parents, young people, choice, decision making, families;
The aims of the study were to: investigate the current pattern of provision of psychosocial support services throughout the UK for children with cancer and leukaemia and their families; describe the needs of children and young people with cancer and leukaemia and their parents over the trajectory of the illness and post treatment; and to compare patterns of support with parents’ and children’s
The aims of the study were to: investigate the current pattern of provision of psychosocial support services throughout the UK for children with cancer and leukaemia and their families; describe the needs of children and young people with cancer and leukaemia and their parents over the trajectory of the illness and post treatment; and to compare patterns of support with parents’ and children’s views of their needs, and develop recommendations for the voluntary sector’s provision of services. The appendices contain supplementary materials and mewthodologies of the research.
Subject terms:
quality of life, social work, social care provision, treatment, therapy and treatment, young people, carers, cancer, children, families;
The diagnosis and treatment of cancer or leukaemia in a child presents a considerable challenge to families. While major advances have been made in the treatment of childhood cancer, with survival rates now exceeding 60 per cent, evaluation of psychosocial support is less developed. High levels of parental emotional distress have been found in a number of studies at the early stage of diagnosis and treatment, and for some families distress has been shown to persist over subsequent years, even when active treatment has ended and the child is in remission. Similarly, the emotional impact of the disease on children can also persist over a number of years. The aims of the study were to: investigate the current pattern of provision of psychosocial support services throughout the UK for children with cancer and leukaemia and their families; describe the needs of children and young people with cancer and leukaemia and their parents over the trajectory of the illness and post treatment; and to compare patterns of support with parents’ and children’s views of their needs, and develop recommendations for the voluntary sector’s provision of services.
The diagnosis and treatment of cancer or leukaemia in a child presents a considerable challenge to families. While major advances have been made in the treatment of childhood cancer, with survival rates now exceeding 60 per cent, evaluation of psychosocial support is less developed. High levels of parental emotional distress have been found in a number of studies at the early stage of diagnosis and treatment, and for some families distress has been shown to persist over subsequent years, even when active treatment has ended and the child is in remission. Similarly, the emotional impact of the disease on children can also persist over a number of years. The aims of the study were to: investigate the current pattern of provision of psychosocial support services throughout the UK for children with cancer and leukaemia and their families; describe the needs of children and young people with cancer and leukaemia and their parents over the trajectory of the illness and post treatment; and to compare patterns of support with parents’ and children’s views of their needs, and develop recommendations for the voluntary sector’s provision of services.
Subject terms:
quality of life, social work, social care provision, treatment, therapy and treatment, young people, carers, cancer, children, families;
British Journal of Social Work, 33(8), December 2003, pp.1063-1080.
Publisher:
Oxford University Press
Current health and social care policy seeks to develop and refine standards of service quality. However, policies have so far largely focused upon statistically based service output indicators. Recognizing the importance and yet limitations of this, especially in services for disabled children and their families, this paper draws upon qualitative and quantitative data to explore indicators that are meaningful and relevant to disabled children and their families. Results demonstrate the need to look beyond a generic family-based perception of service quality, as children and parents value different aspects of service quality and prioritize different indicators when using different types of services. Although some indicators are regarded as 'core' quality indicators, irrespective of service type,
Current health and social care policy seeks to develop and refine standards of service quality. However, policies have so far largely focused upon statistically based service output indicators. Recognizing the importance and yet limitations of this, especially in services for disabled children and their families, this paper draws upon qualitative and quantitative data to explore indicators that are meaningful and relevant to disabled children and their families. Results demonstrate the need to look beyond a generic family-based perception of service quality, as children and parents value different aspects of service quality and prioritize different indicators when using different types of services. Although some indicators are regarded as 'core' quality indicators, irrespective of service type, others are only prioritized for specific types of services.
Subject terms:
outcomes, performance indicators, performance management, physical disabilities, planning, quality assurance, social work, social care provision, children, families;
Health and Social Care in the Community, 10(2), March 2002, pp.74-81.
Publisher:
Wiley
The provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory processes for service users and their families. This article looks at how parents would like to receive this information and also discusses the empowering potential of user-friendly
The provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory processes for service users and their families. This article looks at how parents would like to receive this information and also discusses the empowering potential of user-friendly information. The article draws on data collected from a focus group discussions with parents caring for children with a range of disabilities or chronic illness. In particular it examines the criteria by which parents judge the quality of information and their ideas as to what constitutes good practice, especially in terms of how information is presented, its content and the way it is delivered. Using these ideas and criteria, the paper begins to develop a model of good information practice that is both three-dimensional and personally interactive.
Subject terms:
long term conditions, models, physical disabilities, user views, carers, children, families, empowerment, good practice;
Disability and Society, 14(6), November 1999, pp.753-769.
Publisher:
Taylor and Francis
This paper focuses upon the transition experiences of disabled young people, a group frequently hidden within discussions of 'youth'. It initially discusses young people's next educational/vocational step after school leaving in relation to the traditional idea of a school to work transition. Taking a broader approach the paper then focuses on the complex concept of a more independent 'adult' status from the perspective of the study's young people and their parents/carers.
This paper focuses upon the transition experiences of disabled young people, a group frequently hidden within discussions of 'youth'. It initially discusses young people's next educational/vocational step after school leaving in relation to the traditional idea of a school to work transition. Taking a broader approach the paper then focuses on the complex concept of a more independent 'adult' status from the perspective of the study's young people and their parents/carers.
Subject terms:
independence, physical disabilities, schools, service users, young people, youth work, carers, families, employment;
Report of a project which worked with parents of disabled children and practitioners to draw up criteria for good information provision. These criteria were then used by parents to judge current examples of information, in order to define a model of good practice. Begins with a discussion of research on families' information needs and current policy. The standards for information developed
Report of a project which worked with parents of disabled children and practitioners to draw up criteria for good information provision. These criteria were then used by parents to judge current examples of information, in order to define a model of good practice. Begins with a discussion of research on families' information needs and current policy. The standards for information developed by project participants are then explained with reference to issues of presentation, content, delivery and organisation. Individual information sources, verbal, written and audio-visual, were then appraised and examples of good practice highlighted.
Subject terms:
information services, parents, physical disabilities, user views, audio visual media, carers, children, communication, counselling, families, good practice;