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Disabled children are a broad group that includes those with complex, special or additional health needs as a result of chronic physical, cognitive, communication or behavioural problems. These children are more frequently admitted to hospital than other children; however, there appears to be relatively little research on their experience as inpatients. The aim of this structured review and synthesis was to integrate findings from qualitative studies reporting the experience of disabled children when they are hospital inpatients. Inclusion criteria were: qualitative studies that focused on the experience of children less than 18 years old, with a chronic health condition or neurodisability, during an inpatient stay. Studies of outpatient episodes or intensive care units were excluded. A systematic search identified relevant abstracts, selected papers were reviewed and data were extracted. The synthesis involved elucidating and integrating common themes. Eight relevant papers were identified; data were gathered from children, parents and staff. Communication between children and staff was a dominant theme and comprised giving the child information about their condition and appropriate involvement of the child/young person in discussions and decision making that affected them. Also important was communication between parents and staff, particularly around the division of care for their child. Other themes included emotions, particularly fears, the ward environment and confidence in staff. The review suggests that disabled children's experience as inpatients is not always optimal. Improving the communication skills of ward staff and providing information to disabled children and their families would improve disabled children's experience when they are inpatients. [ABSTRACT FROM AUTHOR]

Background: The Healthy Child Programme is the universal public health system in England to assess and monitor child health from 0 to 19. Following a review of measures for closer monitoring at age 2 years, the Department of Health for England implemented the Ages & Stages Questionnaires®, Third Edition (ASQ‐3™; Hereon, ASQ‐3). Aim: The aim of this study was to evaluate the acceptability and understanding of the ASQ‐3 in England by health professionals and parents. Method: A mixed‐methods approach was used. This paper reports on the qualitative data drawn from interviews with 40 parents and 12 focus groups with 85 health professionals. The data were analysed using applied thematic analysis. Findings Overall, parents and health professionals found the ASQ‐3 acceptable and understandable and could use it as a measure at age 2 years. The ability to work in partnership was valued. Some limitations included potential to cause anxiety, concerns around the safety of some of the items, and use of Americanized language. Health professional's training in the use the ASQ‐3 was inconsistent. Conclusion: The ASQ‐3 is an acceptable and understandable measure to use as part of the 2‐year assessment with some adaptations to the English context and some standardized training for health professionals. [ABSTRACT FROM AUTHOR]

Abstract: Background: Family‐centred services (FCS) is widely regarded as the best practice approach in early interventions. Creating a therapeutic environment, which also stimulates collaboration between parents and service professionals, is a way to conform to the principles of FCS. The present paper describes the project entitled @home, involving the implementation of home consultations by a specialized team working with children aged 0–5 years at our rehabilitation centre in the Netherlands. The objectives of this article are to (a) describe the development and implementation of home consultations as part of regular care and (b) share the experiences of parents and service providers with home consultations. Method: The implementation process was divided into 3 steps: (1) interviewing experts, (2) adjusting current rehabilitation trajectories, and (3) service providers offering consultations to children at home. The experiences with the home consultations were immediately incorporated in the system, making the implementation an iterative process. Results: In 82% of the 133 home conducted consultations, the service professionals reported that it was more valuable to offer home consultations than seeing the child at the rehabilitation centre. The semistructured interviews revealed that parents and service providers found that they received and provided more tailored advice, perceived a more equal partnership between service professionals and parents, and reported that the home consultations provided a good natural therapeutic environment where a child can be itself and where the child performs best. Conclusion: By using the @home system based on the 3 service models, home consultations are now part of the regular paediatric rehabilitation system at our rehabilitation centre. [ABSTRACT FROM AUTHOR]

Background Participating in everyday life is essential to the healthy development and emotional well-being of children. However, little is known about siblings of children with complex care needs (CCN), and their perspectives and experiences of participating in everyday life. The aim of this paper is to present research findings that add to our understanding of how siblings of children with CCN view and experience participation in everyday life. Methods To arrive at a detailed and accurate understanding of the siblings' perspectives and experiences, we used the qualitative research design of ethnography. Sixteen siblings (seven brothers, nine sisters) of children with CCN were recruited. The siblings ranged in age between 7 and 25 years, with a mean age of 14 years. All siblings took part in opened-ended interviews and completed ecomaps to describe how they participate. Five siblings also took part in the photovoice method. Analysis involved several iterative steps, congruent with ethnography. Results Four main themes emerged as follows: (1) participation is about being part of a group; (2) it feels good; (3) I love my sibling but...; and (4) promoting participation. Siblings of children with CCN identified challenges to participation and also described ways that they participate that relate to the care of their sibling. Conclusions Siblings prioritized the relationship with their sisters and brothers with CCN in their life, and a great deal of their participation was chosen with their sibling in mind. Sibling-to-sibling relationships were distinct and meaningful and, as a result, participation was always done mindfully and with the family needs at the forefront. Nonetheless, clinicians caring for children with CCN must keep in mind the challenges that siblings of children with CCN experience and provide strategies to siblings that will help to promote their participation in everyday life. [ABSTRACT FROM AUTHOR]

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: The UK National Institute for Health and Care Excellence (NICE) clinical guidelines recommends the following steps in the transition from child to adult services for young people with attention deficit hyperactivity disorder (ADHD): reassessment before and after transition, transition planning, formal meeting between services, and involvement from young person and carer, completed by age 18. Methods: A UK surveillance study asked clinicians to report young people on their caseloads with ADHD in need of transition to adult services in 2016 to support their continued access to medication need. Clinicians reported young people as they aged to within 6 months of the transition boundary, a prospective questionnaire prior to transition asked about intended transition and the use of local transition protocols. A retrospective questionnaire sent 9 months later established which steps recommended by NICE were followed during transition. Clinicians (38) working in child or adult services were interviewed about their experiences of transition and the use of NICE guidelines during transition and were analysed using a framework approach. Results: Information was shared between services in 85% of the 315 identified transition cases. A joint meeting was planned in 16% of cases; joint working before transfer occurred in 10% of cases. Clinicians were aware of NICE guidelines; they had mixed views on whether (local) guidelines or protocols were helpful. The main reason for not following guidelines was workload and resources: "NICE recommends stuff that is miles above what we will ever be able to provide". Conclusions: Clinicians involved in the transition process of young people with ADHD judged NICE guidelines to be unrealistic given the current limited resources and service organization. More open dialogue is needed for recommendations on service models to bridge the gap between guideline recommendations and what is viewed as feasible and how implementation of guidance is funded, monitored, and prioritized. This may lead to valuable changes in the consultation process, for example, consideration of a layered (gold, standard, and minimal) system for some NICE guidelines. [ABSTRACT FROM AUTHOR]

Background: Children and young people with long‐term physical health conditions are at increased risk of experiencing mental health and well‐being difficulties. However, there is a lack of research that explores the experiences of and attitudes towards interventions aiming to improve their mental health and well‐being. This systematic review seeks to address this gap in the literature by exploring what children and young people with long‐term conditions, their caregivers, and health practitioners perceive to be important aspects of interventions aiming to improve their mental health and well‐being. Methods: An information specialist searched five academic databases using predefined criteria for qualitative evaluations of interventions aiming to improve the mental health or well‐being of children with long‐term physical conditions. Reviewers also performed supplementary citation and grey literature searches. Two reviewers independently screened titles, abstracts, and full texts that met the inclusion criteria and conducted data extraction and quality assessment. Meta‐ethnography was used to synthesize the findings. Results: Screening identified 60 relevant articles. We identified five overarching constructs through the synthesis: (a) Getting In and Staying In, (b) Therapeutic Foundation, (c) Social Support, (d) A Hopeful Alternative, and (e) Empowerment. The line of argument that links these constructs together indicates that when interventions can provide an environment that allows young people to share their experiences and build empathetic relationships, it can enable participants to access social support and increase feelings of hope and empowerment. Conclusion: These findings may provide a framework to inform the development of mental health interventions for this population and evaluate existing interventions that already include some of the components or processes identified by this research. Further research is needed to establish which of the constructs identified by the line of argument are most effective in improving the mental well‐being of young people living with long‐term conditions. [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]

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 Despite the benefits of Neonatal Follow-Up ( NFU) programs for infants at risk for developmental problems subsequent to preterm birth, non-attendance continues to be a problem within Canada and beyond. This study investigated the barriers and facilitators to attendance at Canadian NFU programs from mothers' and health care providers' ( HCP) perspectives. Methods In this multi-site qualitative descriptive study, we conducted semi-structured individual interviews with 12 mothers, six from each of two NFU programs; and focus groups with 20 HCPs from nine NFU programs. Interviews were audio-recorded and transcribed and then subjected to thematic analysis. Results The predominant barriers represented a complex interplay of cumulative factors: mothers' isolation and feeling overwhelmed, with limited support, experiencing difficulty attending because of limited resources, who viewed NFU as not needed until problems arose for their child. Other barriers included vulnerability and fear of bad news. Mothers reported the need to protect their vulnerable child from risks, whereas HCPs reported creating vulnerability by monitoring the child's development over time. HCPs perceived fear of bad news as a barrier, whereas mothers viewed that impending bad news increased their need to attend to address the issue. The predominant facilitators were support, family centred-care and mothers with adequate resources. Conclusions Attendance is most problematic for mothers with limited support, capacity and resources. First and foremost, targeted approaches to NFU service provision are needed to address the cumulative barriers and improve experiences for mothers who find it difficult to attend NFU. A continuous relationship with a single point of contact is needed and merits further investigation - a provider who works across the traditional silos of neonatal intensive care, NFU and community services, minimizes duplication and navigates transitions. [ABSTRACT FROM AUTHOR]

Aims The aim of the current study was to gain an understanding of the experiences and aspirations of young people living with Developmental Coordination Disorder ( DCD) in their own words. Methods Eleven young people aged 11-16 years with a prior diagnosis of DCD were identified from child health records of two participating NHS trusts. The sample included seven boys and four girls, from different socio-economic backgrounds living in different parts of one large urban area in England. In depth one-to-one semi-structured interviews and subsequent follow-up small group interviews were carried out with the young people. Interviews were enhanced using participatory arts-based techniques. All interviews were recorded verbatim and transcribed. Narrative data were analysed using Lindseth's interpretive phenomenology. Results The central theme of 'We're all different' described how the young person saw themselves and encompassed the formation of identity. Subthemes illustrated the attitude of the young people to their day to day lives, their difficulties and strategies used by the young people to overcome these difficulties in school and at home. The attitude of the school to difference, the presence of bullying, the accepting nature of the class, teachers and peers were vitally important. Areas of life that encouraged a positive sense of identity and worth included being part of a social network that gave the young people a sense of belonging, potentially one that valued differences as well as similarities. Conclusion The current work highlights the need for services to adopt a model of DCD where the young person talks about what they can do and considers strategies of overcoming their difficulties. This has implications for education and future intervention strategies that focus on fostering psychological resilience and educational coping strategies rather than simply attempting to improve motor skills. [ABSTRACT FROM AUTHOR]

Background Diagnosing autistic spectrum disorder is a challenge, typically involving myriad professionals. In the current climate we explore how diagnosis is managed in the real world by professionals. Methods Using semi-structured interviews we thematically analyse data from psychiatrists, paediatricians and educational psychologists. Results While there is some consistency across and within these groups there are also a number of variances, and several important issues are highlighted. These include the problem of time and resources, the issue of location for diagnosis, the value of diagnostic tools and schedules, the need for supporting information, the difficulty of multi-agency working, the relevance of a physical examination and the eventual diagnostic label. Conclusions In the current economic climate and considering changes in guidelines there is a need to evaluate current service provision and enhance services. However, attention needs to be paid to the practical and realistic application of the suggested guidance. [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]

Meta-syntheses can enhance our knowledge regarding the impact of the environment on the participation of youth with disabilities and generate theoretical frameworks to inform policy and best practices. The purpose of this study was to describe school-aged youth with disabilities' perspectives regarding the impact of the environment and modifications on their participation. A meta-synthesis systematically integrates qualitative evidence from multiple studies. Six databases were searched and 1287 citations reviewed for inclusion by two independent raters; 15 qualitative articles were selected for inclusion. Two independent reviewers evaluated the quality of each study and coded the results section. Patterns between codes within and across articles were examined using a constant comparative approach. Environments may be more or less inclusive for youth with disabilities depending upon others' understanding of individual abilities and needs, youth involvement in decisions about accommodations, and quality of services and policies. Youth implemented strategies to negotiate environmental barriers and appraised the quality of their participation based on the extent to which they engaged alongside peers. This meta-synthesis generated a framework illustrating the relationship between the environment, modifications and participation, and provided a conceptualization of participation grounded in the lived experiences of youth with disabilities. Findings reveal gaps in current knowledge and highlight the importance of involving youth with disabilities in decision making. [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]

Objective We use children's drawings to investigate social stigmatization of AIDS-affected and poverty-affected children by their peers, in the light of suggestions that the stigmatization of AIDS-affected children might derive more from the poverty experienced by these children than from their association with AIDS. Methods A qualitative study, in rural Zimbabwe, used draw-and-write techniques to elicit children's (10-12 years) representations of AIDS-affected children ( n= 30) and poverty-affected children ( n= 33) in 2009 and 2010 respectively. Results Representations of children affected by AIDS and by poverty differed significantly. The main problems facing AIDS-affected children were said to be the psychosocial humiliations of AIDS stigma and children's distress about sick relatives. Contrastingly, poverty-affected children were depicted as suffering from physical and material neglect and deprivation. Children affected by AIDS were described as caregivers of parents whom illness prevented from working. This translated into admiration and respect for children's active contribution to household survival. Poverty-affected children were often portrayed as more passive victims of their guardians' inability or unwillingness to work or to prioritize their children's needs, with these children having fewer opportunities to exercise agency in response to their plight. Conclusions The nature of children's stigmatization of their AIDS-affected peers may often be quite distinct from poverty stigma, in relation to the nature of suffering (primarily psychosocial and material respectively), the opportunities for agency offered by each affliction, and the opportunities each condition offers for affected children to earn the respect of their peers and community. We conclude that the particular nature of AIDS stigma offers greater opportunities for stigma reduction than poverty stigma. [ABSTRACT FROM AUTHOR]