The participation of children and young people: children, young people, parents and professionals together

No abstract available

Genetic professionals' reports of nondisclosure of genetic risk information within families

Patients attending genetic clinics are often the main gatekeepers of information for other family members. There has been much debate about the circumstances under which professionals may have an obligation, or may be permitted, to pass on personal genetic information about their clients but without their consent to other family members. We report findings from the first prospective study investigating the frequency with which genetics professionals become concerned about the failure of clients to pass on such information to their relatives. In all, 12 UK and two Australian regional genetic services reported such cases over 12 months, including details of actions taken by professionals in response to the clients' failure to disclose information. A total of 65 cases of nondisclosure were reported, representing

In Demand: Therapeutic Services for Children and Young People Who Have Experienced Sexual Abuse

This paper describes the key findings of an NSPCC study estimating need, in the UK, for therapeutic services for children who have experienced sexual abuse. This is based upon current estimates of the prevalence and impact of sexual abuse towards children and young people against the availability of therapeutic services in the UK. Data were collected on service location, availability, scope and coverage across England, Wales, Northern Ireland and Scotland. Researchers: (1) mapped 508 services; (2) collected data from 195 services via a structured questionnaire; (3) followed up 21 service managers and 11 service commissioners with a semi-structured interview; and (4) carried out two focus groups with young people. Data were collected on service location, availability, scope and coverage The overall level of specialist provision is low, with less than one service available per 10 000 children and young people in the UK. Calculations of need indicate that 57 156 children across the UK in the last year may have been unable to access a service. Findings from services support the view that need outstrips availability; that referral routes are limited, leaving few options for young people who have been raped or seriously sexually assaulted to directly access support; that significant waiting lists mean services must focus on reactive, rather than preventive, work; and that services are less accessible for certain groups, especially sexually abused teenagers, children with disabilities and those from Black, Asian, Minority Ethnic and Refugee backgrounds. Copyright (c) 2012 John Wiley & Sons, Ltd. Key Practitioner Messages Relevant professionals must be adequately trained to talk to children about sexual abuse and to identify those vulnerable in order to identify need. Expert specialist services are well placed to share learning on early help and identification with broader children's service providers. Active steps need to be taken by commissioners in consultation with young people, voluntary sector and adult sexual violence service providers to meet the shortfall at the level of local authorities.

Young people's self-reported experiences of sexual exploitation and sexual violence: a view from Northern Ireland

The issue of young people’s experiences of sexual exploitation and sexual violence has received increasing political and media attention within recent years. However, whilst many studies have identified this to be an emerging issue of concern, the collation of prevalence data on the extent of these issues is still very much in its infancy. In this article we report on the findings of a large-scale project on the sexual exploitation of young people, undertaken in Northern Ireland from 2009 to 2011. The article primarily explores young people’s self-reported experiences of sexual violence and exploitation, collated from their responses to a module of questions placed in the 2010 Young Life and Times Survey. The quantitative dataset from the survey covers both prevalence of sexually exploitative experiences and young people’s reports about the type of individuals perpetrating these incidents. This dataset is illustrated and contextualised with reference to the qualitative findings from interviews with young people and professionals conducted as part of the wider sexual exploitation study. The article concludes with a consideration of the implications of the findings, with particular reference to the need for further preventative work in this field.

The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.

Meeting the Needs of Vulnerable Young Men: A Study of Service Provider Views

This article uses a qualitative approach to elicit the views of 31 professionals who provide services to vulnerable young men. The findings reveal six key themes following focus group interviews: (i) the importance of masculinity in explaining problematic behaviour; (ii) the misuse of alcohol and drugs; (iii) alienation and social isolation; (iv) concerns about suicide and self-harm; (v) the quality of existing services; and (vi) recommendations for changes to services. Service providers generally acknowledged the social context in explaining these behaviours and argued for enhanced services and a more developed skills base in working with vulnerable young men. 

A “Child’s Rights Perspective”: The “Right” of Children and Young People to Participate in Health Care Research

As all human beings are consumers of health care provision across the life span and in receipt of care delivered by accountable health care professionals, all should have the right to be involved in shaping the future of their own health care. Rights-based participation, when applied successfully, has the potential to inform and influence the delivery of child health care, the child’s experience of health care, plus children’s nursing education (Coyne & Gallagher, 2011). The “right” of every child and young person to participate in research that relates to their own health care is also sustained by the author’s lead position as a Senior Lecturer in Higher Education for pre-registration children’s nursing in Northern Ireland and the appreciation of their voice when practicing as a registered children’s nurse and ward sister. The report provides an insight into seminal work on human and child rights; the historical context of children in Western society, and the evolution of children’s nursing amid the child’s right to participate in shaping their own health care.

The perceived impact of interprofessional information sharing on young people about their sexual health care

This article presents the results from an analysis of data from service providers and young adults who were formerly in state care about how information about the sexual health of young people in state care is managed. In particular, the analysis focuses on the perceived impact of information sharing between professionals on young people. Twenty-two service providers from a range of professions including social work, nursing and psychology, and 19 young people aged 18–22 years who were formerly in state care participated in the study. A qualitative approach was employed in which participants were interviewed in depth and data were analysed using modified analytical induction (Bogdan & Biklen, 2007). Findings suggest that within the care system in which service provider participants worked it was standard practice that sensitive information about a young person’s sexual health would be shared across team members, even where there appeared to be no child protection issues. However, the accounts of the young people indicated that they experienced the sharing of information in this way as an invasion of their privacy. An unintended outcome of a high level of information sharing within teams is that the privacy of the young person in care is compromised in a way that is not likely to arise in the case of young people who are not in care. This may deter young people from availing themselves of the sexual health services.

Service Provision for Children and Young People with Acquired Brain Injury; Practice Recommendations: – International Paediatric Brain Injury Society (IPBIS).

Background: Providing appropriate rehabilitation services for Acquired Brain Injury (ABI) in childhood presents a number of challenges for caregivers, health and education professionals and the young person as they develop.
Primary Objective: To record the challenges and possible creative solutions generated by an international group of professionals to address the needs of children with ABI.
Review of Information: Recommendations were generated from children’s special interest group meetings of the International Brain Injury Association (Turin Italy, 2001, Stockholm Sweden, 2003, Melbourne Australia, 2005, Lisbon Portugal, 2008) and through meetings of the International Paediatric Brain Injury Society (IPBIS), formed in 2009. Delegates participating in the workshops were representative of nations from around the world and included The Netherlands, New Zealand, Australia, UK, Finland, Germany, South Africa, USA, Canada, Sweden, Brazil and Italy.
Outcomes: The information presented is based on a retrospective review of those meetings and the summaries of the topics considered.

Improving allied health professionals' research implementation behaviours for children with cerebral palsy: protocol for a before-after study

BACKGROUND: Cerebral palsy is a permanent disorder of posture and movement caused by disturbances in the developing brain. It affects approximately 1 in every 500 children in developed countries and is the most common form of childhood physical disability. People with cerebral palsy may also have problems with speech, vision and hearing, intellectual difficulties and epilepsy. Health and therapy services are frequently required throughout life, and this care should be effective and evidence informed; however, accessing and adopting new research findings into day-to-day clinical practice is often delayed.

METHODS/DESIGN: This 3-year study employs a before and after design to evaluate if a multi-strategy intervention can improve research implementation among allied health professionals (AHPs) who work with children and young people with cerebral palsy and to establish if children's health outcomes can be improved by routine clinical assessment. The intervention comprises (1) knowledge brokering with AHPs, (2) access to an online research evidence library, (3) provision of negotiated evidence-based training and education, and (4) routine use of evidence-based measures with children and young people aged 3-18 years with cerebral palsy. The study is being implemented in four organisations, with a fifth organisation acting as a comparison site, across four Australian states. Effectiveness will be assessed using questionnaires completed by AHPs at baseline, 6, 12 and 24 months, and by monitoring the extent of use of evidence-based measures. Children's health outcomes will be evaluated by longitudinal analyses.

DISCUSSION: Government, policy makers and service providers all seek evidence-based information to support decision-making about how to distribute scarce resources, and families are seeking information to support intervention choices. This study will provide knowledge about what constitutes an efficient, evidence-informed service and which allied health interventions are implemented for children with cerebral palsy.

TRIAL REGISTRATION: Trial is not a controlled healthcare intervention and is not registered.

Psychosocial interventions for reducing the harmful effects of war and conflict-related violence on young children aged 0-11 years (Protocol)

Children living in a conflict-affected society can be exposed to daily violence in their communities and, as such, may be at risk of a range of harmful effects. Psychosocial interventions in conflict-affected areas aim to improve outcomes for children and can be treatment or prevention focused. The literature mainly focuses on psychological effects e.g. PTSD or anxiety disorders. Until recently, rather less attention was paid to the influence of mediating variables (cultural context or personal capacity) and their importance in reducing harmful effects.

This systematic review will assess the effectiveness of interventions in reducing the harmful effects of war and conflict-related violence on young children. It will also determine whether the interventions have differential effects depending on age and gender.

Children living in conflict-affected societies have unique needs for support and services. As such, any intervention delivered should be designed and implemented using the best available evidence. Professionals, policy makers and service provider will benefit from this review as to ‘what works’ for this vulnerable population and further exploration (via a Ph.D.) is planned to further extend the impact of this review.