Wendy Mitchell

Contextualizing Risk and Danger: An Analysis of Young People's Perceptions of Risk

Current debates about the nature of risk in late modernity suggest that changing social structures and a weakening, or increasingly global mediation of social constraints associated with the old order, have given rise to a new set of risks and opportunities. Social inequalities continue to impact upon peoples lives but from within the contingencies of individualizing processes of ‘risk society’. Whilst it is acknowledged that there are differences between the production and perception of risks, there is a need for empirical evidence examining how risks are unequally distributed. The same study can provide illustration of how the solutions to social ills are often sought at an individual rather than a collective level through personal action. Drawing upon data from a three-year project, this paper explores young peoples perceptions of risk. It is argued that since young peoples experiences continue to be shaped by local social dimensions of class and gender, risk behaviour should continue to be analysed within these contexts.

Young People with High-Functioning Autism and Asperger's Syndrome Planning for and Anticipating the Move to College: What Supports a Positive Transition?.

For many young people in England, the move into continuing education involves a transfer from the school where they were educated to a further education college. For those with high-functioning autism or Aspergers syndrome, this can be a challenging process. Past research has demonstrated some of the problems that these young people can encounter. This article by Wendy Mitchell and Bryony Beresford, both based in the Social Policy Research Unit at the University of York, adds to the evidence base by describing how best to support these young people, focusing specifically on ‘young person endorsed’ practice. Data are gleaned from qualitative interviews with 18 young people with high-functioning autism/Aspergers syndrome. Findings reveal that young people welcomed the involvement of practitioners; however, specific forms of help and knowledge were particularly valued. In addition, it was parents, as opposed to professionals, who typically emerged as the most significant and valued source of support. Implications for practice are discussed, including the support needs of parents.

Survey of psychosocial support provided by UK paediatric oncology centres

Aim: To obtain a comprehensive overview of current patterns of psychosocial support provided by National Health Service (NHS) paediatric oncology treatment centres across the UK. Methods: A postal questionnaire was sent to co-ordinators in the UK Children’s Cancer Study Group (a professional body that is responsible for the organisation of treatment and management of childhood cancer in the UK) in 21 treatment centres and three separate Teenage Cancer Trus units. A range of psychosocial topics were explored, including ratio of staff providing support to patients; facilities provided for children and families; psychosocial support services such as support groups; information provision; and transition support. Results: There were many good areas of support provided by centres, but there was also a lack of standard practices and procedures. All centres employed social workers, play specialists, and paediatric oncology outreach nurses, but patient to staff ratios varied across centres. The poorest staff provision was among psychologists, where patient to staff ratios ranged from 132:1 to 1100:1. Written information was standard practice, while provision of other types of information (audiovisual, online) varied; none of the centres provided audio information specifically for children/young people. Conclusion: This variability in practices among centres frequently occurred, as centres rarely had procedures formally agreed or recorded in writing. British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service. This study further demonstrates the importance of standards and the need to agree guidelines for the provision of psychosocial support for children/young people and their families throughout the course of the illness.

Risk and adult social care: Identification, management and new policies. What does UK research evidence tell us?

Risk is a central defining feature and area of concern in adult social care provision, but what do we actually know about how service users, carers and practitioners define and manage risk? This question is increasingly important as current policy advocates greater service user choice and control through a range of self-directed support mechanisms, and statutory duties and professional boundaries are challenged. This paper reports the results of a recently completed UK based scoping review that investigated how different groups of adult social care service users and service providers perceive and understand the everyday risks they face. It highlights how different management strategies are also adopted by different groups of people, which can lead to tensions and potential conflict between practitioners, service users and informal carers. However, whilst some areas of risk in adult social care have been the focus of considerable research, others appear to have been largely ignored. The voices of some groups of users remain hidden and apparently of little concern. These gaps and inconsistencies will be identified and discussed in relation to current policy developments and their implications.

‘I know how I feel’ Listening to Young People with Life-limiting Conditions who have Learning and Communication Impairments

UK government policy advocates involving children in decisions about their lives. However, disabled children are often marginalized and not consulted, especially those with learning and communication impairments. Drawing on an ongoing English Government funded longitudinal study exploring different groups of service users’ choices, this article demonstrates the important contribution that qualitative research methods, especially non-traditional methods, can procure when working with young people who are non-verbal or have limited speech. Working with young people with life-limiting conditions raises some specific challenges for researchers. Here, adapting project wide materials and research methods in order to gain some thematic continuity across different service user groups. Some of these considerations and challenges will be discussed, especially the development of non-verbal forms of communication (talking mats TM). Practical experiences, both positive and negative will be examined. The article concludes by considering some wider implications of using symbols based methods for future research and how these methods can be used across disciplines and by practitioners in their everyday work.

Perspectives of disabled young people with degenerative conditions on making choices with parents and peers

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 peoples 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 peoples age and experience and the type of choice and its perceived seriousness. Recognizing this complexity and the importance of a holistic approach to choice-making, the article concludes with some practice suggestions.

Carers, Choice and Personalisation: What Do We Know?

Despite the long-term strategic shift to personalisation, with its emphasis on choice and control for those who use public services, there has been relatively little policy consideration of family carers’ choice within personalisation. The relationship between carers and personalisation also remains under-researched. This article is based on a review of existing knowledge around personalisation. It shows that carer choice is highly complex, not least because of the multifaceted and paradoxical nature of the concept of choice itself. The review demonstrates that choice for carers within personalisation is no less complex and is subject to new and overlapping variables which do not necessarily lead to improved choice for carers. In light of the limited empirical evidence about carers, choice and personalisation, the introduction of the Care Act 2014, and the importance of frontline practice in securing choice for carers, recommendations are made for future research and social work policy and practice.

Making choices about medical interventions: the experience of disabled young people with degenerative conditions

Background  Current western policy, including the UK, advocates choice for service users and their families, taking greater control and being more involved in decision making. However, children’s role in health decision making, especially from their own perspective, has received less research attention compared to doctors and parents’ perspectives.

Taking on choice and control in personal care and support: The experiences of physically disabled young adults

Summary Research on self-directed care has focused on older people and adults with learning or mental health difficulties. This article reports physically disabled young adults’ experiences of self-directed care. Such work is important because young adults are a ‘minority’ group within adult social care. This, and their still developing life-skills and lack of life experience, may have a bearing on their experiences of self-directed care and associated support needs. An exploratory qualitative study using semi-structured interviews investigated this issue. Participants were 19–29 years with a range of congenital and acquired impairments. Findings Many aspects of interviewees’ experiences of self-directed care appeared to be influenced by their limited life experience, the fact they are still developing life-skills and are a minority group within adult social care. Interviewees identified their lack of life experience and self-confidence as making them cautious in assuming responsibility for their care arrangements and, typically, their desire for on-going parental support. They also believed their age and life stage contributed to difficulties managing carers and PAs. Preferences around characteristics of carers/PAs were influenced by their age and desire to integrate into mainstream activities. Information provided by statutory services did not (fully) acknowledge that some users were young adults. Applications Compared to other physically disabled users of adult social care, young adults’ under-developed life-skills and lack of life experience influences their experiences as users, and the support they needed to assume control of their care arrangements. Tailored information and support for this ‘minority group’ is required.

Allocating Personal Budgets/Grants to Carers:

Summary English policy and practice guidance recommends local authorities offer personal budgets to all adults eligible for social care support using transparent and equitable allocation systems which maximise choice and control for users. This includes family and other unpaid carers as carers in England are entitled to their own personal budget. The Care Act 2014 strengthens carers’ rights and places duties on authorities to assess and meet carers eligible support needs. However, little is known about how authorities assess and allocate resources to carers. This article explores this information gap drawing on data from a survey of English local authorities in two regions completed by carers lead officers and complemented by follow-up telephone interviews with a sub-sample of these officers. Findings Survey and interview results demonstrate wide practice variations around how social workers assess, calculate and distribute resources to carers. There is little uniformity across authorities. Carer eligibility criteria are used but thresholds vary and are often unclear. Most grants/personal budgets are allocated as single annual payments but how the level of these grant/personal budgets are calculated varies with little standardisation. Applications The article develops the evidence base surrounding resource allocation to carers through carer grants/personal budgets. Findings are timely as the Care Act 2014 will strengthen carers’ rights alongside the continuing personalisation of adult social care. Discussing local authority policy and practice around key objectives of equity, transparency and carer choice, implications for future social work practice and its development are considered in light of the Care Act 2014.