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Background A range of voluntary sector organizations are involved in the delivery of services to children, particularly within the Early Year's sector and children's centres. Peers Early Education Partnership (PEEP) Early Explorers project is one example of the way in which explicit partnerships are being forged across statutory and voluntary sectors with the aim of improving outcomes for children and families. This paper reports an exploration of stakeholder views and experiences of two Early Explorer clinics located in areas of high deprivation. Methods Semi-structured interviews were conducted with a purposive sample of stakeholders ( n= 25) from children's centres, PEEP, the health visiting service and service users. Data were fully transcribed and analysed using a thematic approach. Results The data suggest that the two key groups of stakeholders providing Early Explorer clinics (i.e. health visitors and PEEP practitioners) had quite different objectives in terms of their early goals for the clinic, but that despite these differences good progress was achieved in terms of working together effectively. All stakeholders including service users referred to the presence of PEEP as having improved the quality of the clinic environment, and participating mothers identified a wide range of benefits from the enhanced service. However, somewhat restricted views about the role of practitioners within the clinics were identified by users, and the findings suggest that although the early goals for the clinic had been exceeded, these may have been limited in terms of true 'partnership' working. Conclusions Early Explorer clinics appeared to have enhanced the service provided within traditional child health clinics and to have provided practitioners with access to hard-to-reach families and parents with access to services that are consistent with the broader policy aims of improving parent-infant interaction. However, questions remain as to whether the benefit of 'partnership' working was fully realized. [ABSTRACT FROM AUTHOR]

Introduction: Contemporary research into non‐vaccination has highlighted some of the attitudes, beliefs and characteristics of non‐vaccinating parents with recent research also beginning to examine the journey to non‐vaccination. However, the interaction between gender, identity and non‐vaccination is less well understood, as well as the non‐vaccination journey for parents in the United Kingdom. Methods: Using purposive sampling, we recruited mothers who have rejected some or all of their child's routine vaccinations in the last 5–10 years. Semi‐ structured interviews were conducted by phone in late 2020 and analysed using thematic analysis. Results: Ten mothers were interviewed. They differed in socio‐economic, educational and cultural backgrounds, yet all wanted the same thing: to have happy and healthy children, a goal which they saw as their responsibility and within their control and did not include vaccination. Within this shared parenting priority, identities varied considerably. Most mothers strongly rejected the label or identity of 'anti‐vaxxer', preferring alternative terms with less negative social connotations. The decision not to vaccinate was predominantly made by mothers, describing a dynamic where mothers (rather than fathers/partners) were clearly responsible for their children's health, but this largely appeared to be internalized as the mother's role. Conclusions: The heterogeneity of mother's identities within the non‐vaccination movement and the pressures on mothers to raise children with 'optimum health' explored in this study suggest that non‐vaccination is a largely individual choice that requires nuanced and compassionate engagement to understand the root causes behind this decision. [ABSTRACT FROM AUTHOR]

Background: Medical rehabilitation plays an important role in the health care of chronically ill children and adolescents. During medical rehabilitation, supporting illness-related self-regulation is a central goal. Beliefs about illness and beliefs about treatment are core elements of patients' self-regulation, and there is evidence that these beliefs are relevant predictors of different health- and treatment-related outcomes such as adherence. However, little is known about adolescents' beliefs about rehabilitation. This study therefore explores adolescents' treatment beliefs in the context of inpatient medical rehabilitation. Methods: A qualitative study was conducted in a German rehabilitation clinic for children and adolescents. Using a purposive sampling method, 13 adolescents (12-16 years old) were recruited. Semi-structured, audiotaped interviews were conducted and analysed using content analysis. Results: Results demonstrate that adolescents have differentiated rehabilitation-related treatment beliefs. Twelve themes, with various subthemes, emerged, which include access to and knowledge about rehabilitation, the rehabilitation-related individual position and normative aspects, expectations of oneself, as well as in respect of the social context (fellow patients, contact with family and friends), expectations of the structure, process and outcome of rehabilitation, concerns and barriers and emotional aspects. Conclusions: Our explorative study revealed a broad range of rehabilitation-related treatment beliefs in adolescents, indicating parallels, but also differences, to research results with adults. Treatment beliefs are assumed to be an influencing factor for various health- and treatment-related outcomes. Thus, implications of our findings for clinical practice and further research are discussed. [ABSTRACT FROM AUTHOR]

Background: Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental, and psychological factors that are rarely captured by quantitative research alone. This qualitative study sought to explore the lived experience of young people with CP with their physical, mental, and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well‐being. Methods: An integrated research team (including people with CP or other impairments, clinicians, and researchers) was formed to study participant‐identified research needs. A purposive sample of 16 people with CP (seven female), aged 17–29, Gross Motor Function Classification System (GMFCS) levels I–V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology. Results: This study reports the experiences of people with CP across GMFCS levels and identifies some consequences of growing up with the condition: physical and mental health issues, importance of meaningful participation, impact of the environment, and identity formation. Participants shared challenges related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment. Discussion Body structure and function challenges impact participation in activities of daily living, threatening participants' ability to form positive identities and live meaningful lives. People with CP desire to work but may require additional training, accommodation, and support to do so. Environmental conditions, including relationships, supportive people, and accessibility, shape participants' health, well‐being, and social/civic engagement. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services. [ABSTRACT FROM AUTHOR]

Abstract: Background: Due to medical advances, growing numbers of adolescents with congenital heart disease (CHD) survive into adulthood and transferring from paediatric to adult healthcare. This transfer is significant step in a young person's life, and this study examines the views of Irish healthcare professionals' on how best to manage this transition. Methods: Purposeful sampling was used to invite participation by healthcare professionals (HCPs) from a variety of disciplines whose caseloads include adolescents and young adults with CHD. Fourteen professionals participated in semistructured interviews regarding their experiences of the transition process and their recommendations. Data were collected during Spring 2016 and analysed using thematic analysis. Results: Results indicated that the current approach to transition and transfer could be improved. Professionals identified barriers hindering the transition process such as cultural and attitudinal differences between HCPs dealing with child and adult patients, inadequate preparation and education of patients about their condition, parental reluctance to transfer, and concern about parents' role in on‐going treatment. Measures such as better support and education for both the patients and their parents were recommended, in order to facilitate a smoother transition process for all parties involved. Additionally, HCPs identified the need for better collaboration and communication, both between paediatric and adult healthcare professionals and between hospitals, to ensure greater continuity of care for patients. Conclusions: Action is required in order to improve the current transition process. Measures need to be taken to address the barriers that currently prevent a smooth transition process for young adult CHD patients. Professionals recommended the implementation of a structured transition clinic to deal with the wide variety of needs of transitioning adolescent patients and their families. Recommendations for future research are also made. [ABSTRACT FROM AUTHOR]

Background Assent is used to take children's wishes into account when they are invited into clinical trials, but the concept has attracted considerable criticism. We investigated children's accounts of decision-making with the aim of informing practice in supporting children when invited to join a clinical trial. Methods We audio-recorded qualitative, semi-structured interviews with 22 children aged 8-16 years about being invited to take part in a clinical trial. Most children were interviewed with their parents. Analysis of the transcribed interviews examined the content of participants' accounts thematically, whilst also drawing on principles of discourse analysis, which examines how individuals use talk to achieve certain effects or social practices. Results It was not possible to separate children's knowledge of the clinical trial, or their decision-making processes from that of their parents, with parents taking a substantial mediating role in producing their children's decisions. Decision-making gradually unfolded across time and events and was interwoven within the family context, rather than happening in one moment or in the clinical setting. Whilst children valued their parents' role, a case study of child-parent disagreement indicated how children can struggle to be heard. Conclusions Decisions happen within a process of family dynamics, in contrast to ideas of assent that isolate it from this context. Parents have a substantial role in children's decisions, and thus how families come to provide consent. Reflecting this we argue that assent practices need to focus on supporting parents to support their children in learning and deliberating about trials. However, this needs to be accompanied by practitioners being alert to the possibility of divergence in child and parent views and enabling children's perspectives to be heard. [ABSTRACT FROM AUTHOR]

Background A modicum of everyday risk provides opportunities for children to extend the limits of their competence. However, increasingly negative perceptions of risk have led to risk-averse behaviours in adults, including severely restricting children's play. The degree to which risk in play is tolerated by adults impacts on the lives and experiences of children. However, no measure of adult tolerance to everyday risk exists. The purpose of this study was to develop a valid and reliable instrument examining adults' tolerances of risk during children's play. Methods A 31-item survey of risk tolerance was developed based on a Norwegian model of risky play; 100 parents and teachers of children aged 3 to 13 years completed the instrument. Data were subjected to Rasch analysis. Psychometric properties of the data were examined. Results Iterative analyses produced an instrument with goodness of fit statistics in the acceptable range, a logical item hierarchy, person separation index >2 and reliability index of 0.87. There was a strong positive relationship between participants' self-perceived risk tolerance and scores on the instrument, and between the age of the child and scores on the instrument. Conclusions The Tolerance of Risk in Play Scale ( TRiPS) yields valid and reliable data for measuring the success of interventions to change adults' everyday risk beliefs, and for exploring the impact of adults' risk tolerance on children's play and development. [ABSTRACT FROM AUTHOR]

Purpose In this qualitative study, school-age children between 7 and 11 years, living with a bleeding disorder or other chronic illness, defined how they understand their partnership role in family-centred care (FCC), and recommended FCC strategies. Methods This systematic ethnography had three phases: unstructured interviews explored how children understood FCC partnership roles (phase I); document review provided FCC institutional context (phase II); and validation interviews generated FCC partnership recommendations (phase III). This study took place within the area served by a Western Canadian children's hospital. Interviews were held at the hospital or children's home. In phase I, purposive sampling was used to recruit children receiving outpatient care for a bleeding disorder ( n= 4) or another chronic illness ( n= 4). In phase II, policies and legislation were compared with how children understand their FCC partnership role. In phase III, validation interviews were conducted with children ( n= 3) to confirm domains and generate FCC supporting strategies. Data collection and analysis were based on domain analysis and qualitative ethnographic content analysis. Results Phase I outcomes included seven domains regarding how children understood their role as partners in FCC: my best interests, virtues, talking and listening, being involved, knowing, making decisions and being connected. Phase II outcomes revealed how these domains were represented in institutional contexts. Phase III outcomes confirmed domains and generated key strategies to support children's role as FCC partners through graphic representation of FCC as a treasure map, interactive workshop and online game. Conclusions School-age children, living with a bleeding disorder or other chronic illness, similarly want to learn how to be FCC partners by developing competence as healthcare team members, identifying their own best interests, learning how to communicate with 'grown-ups', clarifying roles and goals, and guided opportunities for decision making. Facilitating school-age children's FCC partnership roles is worthy to explore in youth transition programmes. [ABSTRACT FROM AUTHOR]

Background Few studies exist reporting the experiences of parents of children with developmental co-ordination disorder (DCD) a common disorder with a prevalence of 1.8-6%. DCD is characterized by poor motor co-ordination, not caused by a general medical condition, but significantly affecting daily living. This study explores the experiences of parents living with a child with DCD in obtaining a diagnosis; the impact of the diagnosis on parenting and the effect on parents as individuals. Methods Semi-structured interviews with a purposive sample of 15 parents of children with DCD data were recorded and then transcribed. Data were analysed using a coding framework and themes identified similar to Attride-Stirling (2001, Qualitative Research, 1, 385-405). Findings DCD was an all-encompassing condition that dominated all aspects of family life and was a 'hidden disability'. Parents were frustrated by the poor knowledge and expertise of health and education professionals working with children with DCD and the lack of good quality accessible information and support services. Parents became by default the 'expert' on DCD for schools and other services; they were advocates for DCD and their own children. They provided additional support for longer to their child with DCD and had concerns for their future. Parenting a child with DCD was frustrating, exhausting, guilt-ridden as well as rewarding. There was little available time to provide for the needs of other family members. Conclusion A better-trained, knowledgeable workforce would redress the balance for families with DCD by providing better information, support and advocacy freeing parents to parent their families. [ABSTRACT FROM AUTHOR]

Background Children and youth with disabilities are at a higher risk of being socially excluded or bullied while at school compared with their typically developing peers. This study explored disabled children's suggestions for improving social inclusion. Methods Fifteen children with cerebral palsy were interviewed or took part in a group discussion about social inclusion and bullying. All interviews and focus groups were audio-recorded and transcribed verbatim. Results The children and youth described several strategies to help improve social inclusion at school including: (1) disclosure of condition and creating awareness of disability; (2) awareness of bullying; (3) developing a peer support network and building self-confidence; and (4) suggestions on what teachers can do. Conclusions It is recommended that children's suggestions be considered within the classroom context to enhance the social inclusion and participation of children with disabilities. [ABSTRACT FROM AUTHOR]