Children’s views on unlicensed/off-label paediatric prescribing and paediatric clinical trials.

Objectives: To explore the views and perspectives of children on the unlicensed/off-label use of medicines in children and on the participation of children in clinical trials. Methods: Focus-group discussions, involving school children, were carried out in a range of primary and secondary schools in Northern Ireland. A purposeful sample was chosen to facilitate representation of various socioeconomic groupings. Results: A total of 123 pupils, aged from 10 to 16 years, from six schools, participated in 16 focus groups. In general, pupils viewed the unlicensed/off-label use of medicines in children as unsafe and unethical and felt it is necessary to test medicines in children to improve the availability of licensed products. The majority felt that older children should be told, and that parents should be told, about the unlicensed/off-label use of medicines in children, yet they recognised some implications of this, such as potential medication non-adherence. Conclusions: This is the first study to explore the views of healthy children on unlicensed medicine use in children. Children were able to recognise potential risks associated with the unlicensed use of medicines and felt it is necessary to test and license more medicines in children. Practice implications Health care professionals should consider the views of children in decisions that affect their health.

Associations between Mothers' Experiences with the Troubles in Northern Ireland and Mothers' and Childrens' Psychological Functioning: The Moderating Role of Social Identity.

Relatively little research has examined the relations between growing up in a community with a history of protracted violent political conflict and subsequent generations' well-being. The current article examines relations between mothers' self-report of the impact that the historical political violence in Northern Ireland (known, as the Troubles) has on her and her child's current mental health. These relations are framed within the social identity model of stress, which provides a framework for understanding coping responses within societies that have experienced intergroup conflict. Mother-child dyads (N = 695) living in Belfast completed interviews. Results suggest that the mother-reported impact of the Troubles continue to be associated with mothers' mental health, which, in, turn, is associated with her child's adjustment. The strength of mothers' social identity moderated pathways between the impact of the Troubles and her mental health, consistent with the social identity model of stress. (C) 2010 Wiley Periodicals, Inc.

The effect of teachers trained in a fundamental movement skills programme on children’s self-perceptions and motor competence

Perceived and actual motor competence are hypothesized to have potential links to children and young people’s physical activity (PA) levels with a potential consequential link to long-term health. In this cross-sectional study, Harter’s (1985, Manual for the Self-perception Profile for Children. Denver, CO: University of Denver) Competency Motivation-based framework was used to explore whether a group of children taught, during curriculum time, by teachers trained in the Fundamental Movement Skills (FMS) programme, scored higher on self-perception and on core motor competencies when compared to children whose teachers had not been so trained. One hundred and seventy seven children aged 7–8 years participated in the study. One hundred and seven were taught by FMS-trained teachers (FMS) and the remaining 70 were taught by teachers not trained in the programme (non-FMS). The Harter Self-Perception Profile for Children assessed athletic competence, scholastic competence, global self-worth and social acceptance. Three core components of motor competence (body management, object control and locomotor skills) were assessed via child observation. The FMS group scored higher on all the self-perception domains (p < 0.05). Statistically significant differences were found between the schools on all of the motor tasks (p < 0.05). The relationships between motor performance and self-perception were generally weak and non-significant. Future research in schools and with teachers should explore the FMS programme’s effect on children’s motor competence via a longitudinal approach.

Understanding and Supporting Young Children’s Transitions into State Care: Schlossberg’s Transition Framework and Child-Centred Practice

There is a growing body of research regarding children and young people in state care that is organised around the concept of transition. Focusing mainly on young people leaving care, the research highlights their experiences of multiple transitions that can contribute to poor long-term outcomes in terms of emotional and psychological well-being, educational attainment and employment prospects. The smaller body of research that focuses on young children shows that their journeys before and when in state care are also marked by multiple and fragmented transitions. Despite the growing knowledge base, there are two areas that remain under-developed—research that draws attention to the lived experiences of young children regarding their transitions into state care; and the development of conceptual frameworks that centralise young children's perspectives to support the development of practice. This article begins to address these gaps by applying Schlossberg's transition framework to a case study of a young child regarding their transition into state care. The article highlights, through the child's perspectives, the multiple impacts of the transition and considers the implications for the development of better child-centred practice.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis

Aims and objectives: To draw out the similar complexities faced by staff around
truth-telling in a children’s and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling.

Background: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff.

Design: Secondary analysis of data using a supra-analysis design to identify commonality of experiences.

Methods: Secondary ‘supra-analysis’ was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children’s and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies.

Results: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence.

Conclusions: Both children’s and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff.

Relevance to clinical practice: There remains a powerful death-denying culture in
many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

Impact of abuse and neglect on the health and wellbeing of children:Child sexual abuse

During the past 30 years, the focus on the extent and nature of child abuse and neglect has been coupled with an increasing interest in the impact on children’s development, health and mental wellbeing. Child maltreatment is both a human rights violation and a complex public health issue, likely caused by a myriad of factors that involve the individual, the family, and the community. Child abuse includes any type of maltreatment or harm inflicted upon children and young people in interactions between adults (or older adolescents). Such maltreatment is likely to cause enduring harm to the child.
The different forms of abuse and neglect often occur together in one family and can affect one or more children. These include, in deceasing level of frequency: neglect; physical abuse and non-accidental injury; emotional abuse; and sexual abuse (Cawson et al, 2000; 2002). Recently, bullying and domestic violence have been included as forms of abuse of children.
There is a sizeable body of literature on the relationship between types of child maltreatment and a variety of negative health and mental health consequences. These include biological, psychological, and social deficits (for reviews, see Crittenden, 1998; Kendall-Tackett, 2001; 2003). Aside from the serious physical and health consequences of child maltreatment, several emotional and behavioural consequences for children have been noted in the literature.

Sexual Health and Sexuality Education Needs of Young People in Care: a Survey of Service-provider Perspectives. Report No 1.

Aim: This study aims to describe the sex education and sexual health needs of young people in care, and to explore the degree to which these needs are being met by current provision.As part of the Department for Children and Youth Affairs ‘National Strategy for Data and Research on Children’s Lives, 2011-2016’, the HSE Crisis Pregnancy Programme (CPP) and HSE Children and Families Social Services Care Group have co-commissioned a team of researchers from UCD School of Nursing, Midwifery & Health Systems, Insights Health and Social Research and Queen’s University Belfast to examine the sex education and sexual health needs of young people in care in the Republic of Ireland. The project is supported by a steering group of senior personnel from both partner organisations (CPP and CFS) and external advisors. The study involves data collection with young people, care providers, birth parents and foster parents using a mixed methods approach. Findings from each stage of the study will be combined to inform recommendations for policy and practice.

Transition from Children’s to Adult Services forYoung People with Life-limiting Conditions: Findings from a Questionnaire Survey in Northern Ireland

Research aims: 
To describe service provision for the transition from children’s to adult services for young people with life-limiting conditions in Northern Ireland, and to identify organisational factors that promote or inhibit effective transition. 
Study population: 
Health, social, educational and charitable organisations providing transition services to young people with life-limiting conditions in Northern Ireland. 
Study design and methods: 
A questionnaire has been developed by the research team drawing on examples from the literature and the advice of an expert advisory group. The questionnaire was piloted with clinicians,academics and researchers in June 2013. The questionnaire focuses on components of practice which may promote continuity in the transition from child to adult care for young people with a life-limiting condition. The survey will be distributed throughout Northern Ireland to an estimated 75 organisations, following the Dillman total design survey method. Numerical data will be analysed using PASW Statistical software to generate descriptive statistics along with a thematic analysis of data generated by open-ended questions. 
Results and interpretations: 
The survey will provide a description of services, transition policies, approaches to managing transition, categories of service users, the ages at which transition starts and completes, experiences with minority ethnic groups, the input of service users to the process, organisational factors promoting or hindering effective transition, links between services, and service providers’ recommendations for improvements in services.The outcomes will be an overview of the transition services currently provided in Northern Ireland identifying models of good practice and the key factors influencing the quality, safety and continuity of care. Survey results are due early in 2014.

Gaining ethical approvals to undertake sexual health research with young people in the UK: Applying a 'Children's Rights Based Approach'

This paper (co-written with Dr Maria Lohan, Dr Carmel Kelly & Professor Laura Lundy) will describe the ethical review process to undertake health research in the UK, and explain an approach that can help researchers deal with ethical and methodological dilemmas in their research. Ethical review is necessary to ensure researchers and participants are protected, yet the requirement to ‘pass’ numerous committees may be challenging particularly for health researchers who work with vulnerable groups and sensitive topics. The inclusion of these groups/topics is crucial if health researchers are to understand health disparities and implement appropriate interventions with health benefits for vulnerable populations. It is proposed that to overcome ethical and methodological challenges and pitfalls, researchers must implement strategies that advocate for, and increase the participation of, vulnerable populations in health research. A ‘children’s rights based approach’ using participatory methodology will be described that draws on the jurisprudence of international law, (United Nations Convention on the Rights of the Child, 1989) and provides a framework that may empower ethics committees to carry out their function confidently. The role of the researcher, framed within the context of doctoral level study, will be reviewed in terms of the investment required and benefits of utilising this approach. It will be argued that adopting this approach with vulnerable groups, not only guarantees their meaningful participation in the research process and permits their voices to be heard, but also offers ethics committees an internationally agreed upon legal framework, ratified by their governing States, from which to fulfil their obligations and resolve their ethical dilemmas. Increasing the representation and participation of vulnerable groups in health research can inform the development of health policy and practice based on ‘insider knowledge’ that better engages with and more adequately reflects their specific needs. This is likely to yield numerous health, social and economic benefits for all of society through the delivery of more equitable, effective and sustainable services.

Panning for Gold: The Standardizing Work of Filling “Autistic” Shells – Using institutional ethnography to explore textually mediated health relations in the diagnostic process of autism.

Health reform practices in Canada and elsewhere have restructured the purpose and use of diagnostic labels and the processes of naming such labels. Diagnoses are no longer only a means to tell doctors and patients what may be wrong and indicate potential courses of treatment; some diagnoses activate specialized services and supports for persons with a disability and those who provide care for them. In British Columbia, a standardized process of diagnosis with the outcome of an autism spectrum disorder gives access to government provided health care and educational services and supports. Such processes enter individuals into a complex of text mediated relations, regulated by the principles of evidence-based medicine. However, the diagnosis of autism in children is notoriously uncertain. Because of this ambiguity, standardizing the diagnostic process creates a hurdle in gaining help and support for parents who have children with problems that could lead to a diagnosis on the autism spectrum. Such processes and their organizing relations are problematized, explored and explicated below. Grounded in the epistemological and ontological shift offered by Dorothy E. Smith (1987; 1990a; 1999; 2005), this article reports on the findings of an institutional ethnographic study that explored the diagnostic process of autism in British Columbia. More specifically, this article focuses on the processes involved in going from mothers talking from their experience about their childrens problems to the formalized and standardized, and thus “virtually” produced, diagnoses that may or may not give access to services and supports in different systems of care. Two psychologists, a developmental pediatrician, a social worker – members of a specialized multidisciplinary assessment team – and several mothers of children with a diagnosis on the autism spectrum were interviewed. The implications of standardizing the diagnosis process of a disability that is not clear-cut and has funding attached are discussed. This ethnography also provides a glimpse of the implications of current and ongoing reforms in the state-supported health care system in British Columbia, and more generally in Canada, for people’s everyday doings.

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.

A critical analysis of Child and Adolescent Mental Health Services policy in England, 2000‐2015

Policy in Child and Adolescent Mental Health (CAMH) in England has undergone radical changes in the last 15 years, with far reaching implications for funding models, access to services and service delivery. Using corpus analysis and critical discourse analysis, we explore how childhood, mental health, and CAMHS are constituted in 15 policy documents, 9 pre‐2010, and 6 post 2010. We trace how these constructions have changed over time, and consider the practice implications of these changes. We identify how children’s distress is individualised, through medicalising discourses and shifting understandings of the relationship between socioeconomic context and mental health. This is evidenced in a shift from seeing children’s mental health challenges as produced by social and economic inequities, to a view that children’s mental health must be addressed early to prevent future socio‐economic burden. We consider the implications CAMHS policies for the relationship between children, families, mental health services and the state. The paper concludes by exploring how concepts of ‘parity of esteem’ and ‘stigma reduction’ may inadvertently exacerbate the individualisation of children’s mental health.

Children’s Indoor Exposures to (Ultra)Fine Particles in an Urban Area: Comparison Between School and Home Environments

Due to their detrimental effects on human health, scientific interest in ultrafine particles (UFP), has been increasing but available information is far from comprehensive. Children, who represent one of the most susceptible subpopulation, spend the majority of time in schools and homes. Thus, the aim of this study is to (1) assess indoor levels of particle number concentrations (PNC) in ultrafine and fine (20–1000 nm) range at school and home environments and (2) compare indoor respective dose rates for 3- to 5-yr-old children. Indoor particle number concentrations in range of 20–1000 nm were consecutively measured during 56 d at two preschools (S1 and S2) and three homes (H1–H3) situated in Porto, Portugal. At both preschools different indoor microenvironments, such as classrooms and canteens, were evaluated. The results showed that total mean indoor PNC as determined for all indoor microenvironments were significantly higher at S1 than S2. At homes, indoor levels of PNC with means ranging between 1.09 × 104 and 1.24 × 104 particles/cm3 were 10–70% lower than total indoor means of preschools (1.32 × 104 to 1.84 × 104 particles/cm3). Nevertheless, estimated dose rates of particles were 1.3- to 2.1-fold higher at homes than preschools, mainly due to longer period of time spent at home. Daily activity patterns of 3- to 5-yr-old children significantly influenced overall dose rates of particles. Therefore, future studies focusing on health effects of airborne pollutants always need to account for children’s exposures in different microenvironments such as homes, schools, and transportation modes in order to obtain an accurate representation of children overall exposure.

Deconstructing Evidence-Based Practice and Its Application in Children to with Mental Health Disorders

This is a mixed methodology study that uses an autoethnographic approach to combine both an autobiography and a survey of practitioners who work in children’s mental health. It is largely about the implementation of Evidence-Based Practice (EBP), and the questions, concerns, experiences that I have had, and compared them with those of my fellow practitioners. In addition, it is about my journey as a mental health professional, and how I have come to recognize that in order to achieve the goals I wanted to achieve, I needed to return to university to pursue a Master’s degree. Within the research, I identify and discuss different definitions of EBP and identify several themes. I deconstruct the implementation of EBPs through the lens of Foucault and his notions of governmentality. I offer policy and practice recommendations to improve the implementation of EBP and the services received by children facing mental health issues.