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Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes. [ABSTRACT FROM AUTHOR]

Background: Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co‐design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. Objectives: (1) To understand what families and hospital staff want from the service; (2) To understand how the post should be operationalized in practice; (3) To develop the job description and person specification for the postholder. Methods: A range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analyzed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the postholder's job description and person specification. Results: Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. Conclusions: Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co‐designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring that the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co‐design, in terms of time and finances. We believe that the resources required for the co‐design are offset by the advantages of having the right person in the right post, doing the right job. [ABSTRACT FROM AUTHOR]

Background: Childhood long‐term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood. Aims: To explore how young people experience an MS diagnosis. Methods: Qualitative study using a grounded theory approach. In‐depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom. Results: Young people's pre‐illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships. Conclusions: Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long‐term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long‐term conditions achieve their academic potential and receive appropriate careers advice. [ABSTRACT FROM AUTHOR]

Abstract: Background: Adolescents living with chronic conditions often portray themselves as “healthy” online, yet use the Internet as one of their top sources of health information and social communication. There is a need to develop online support programs specific to adolescents with chronic conditions in order to provide a private space to discuss concerns. This paper endeavors to increase our understanding of the online support needs and wants of these adolescents and their interest in and preferences for an online support program. Methods: A qualitative descriptive study using semistructured interviews was completed. Stratified purposive sampling was utilized to ensure a representative sample based on age and diagnosis. English speaking adolescents (aged 12–18 years) diagnosed with a chronic condition were recruited from clinic and inpatient areas across 3 paediatric hospitals in Canada. Results: Thirty‐three participants aged 15.3 ± 1.8 years (64% female) completed the study. The main topics identified were (a) the purpose of current online activity, (b) the benefits and challenges of existing online supports, and (c) a description of ideal online resources. The purpose of online activity was social networking, information, online gaming, and social support. When accessing health information online, participants prioritized websites that were easy to access and understand despite the trustworthiness of the site. The reported benefits and challenges varied across participants with many areas perceived as both a benefit and a challenge. The majority of participants were interested in participating in an online support program that included both accurate disease‐related information and a community of other adolescents to provide social support. Conclusions: Adolescents with chronic conditions are interested in online support that encompasses health information and social support that is flexible and easy to navigate. Findings can be used to develop or adapt existing online support programs for adolescents with chronic conditions to help increase engagement and utilization. [ABSTRACT FROM AUTHOR]

Background: Children with non‐malignant life‐limiting conditions (NMLLCs) constitute the largest proportion of children requiring palliative care. In part, due to technological advances, growing numbers of such children are experiencing improved survival. Care is mostly provided at home by the family, with significant professional input at different points in the child's life trajectory. This study explored the experience of healthcare professionals caring for this cohort of children. Methods: A qualitative descriptive study design using single‐occasion one‐to‐one semi‐structured interviews collected data from 12 healthcare professionals' including nurses, social workers and doctors. Data were analysed using thematic analysis. Results: The findings highlighted the unfailing determination and dedication of healthcare professionals who provided care despite challenges with what seemed like 'with every fibre of their being'. Three key themes marked such strength and commitment; those were 'being there', 'being focused' and 'being strong'. 'Being there' explicitly highlighted expert care that was individualized and responsive to the child and family's unique needs. The provision of such care was often threatened and potentially compromised by the intricacies and challenges associated with children's palliative care (CPC) and service provision. 'Being focused' captured the sense that the healthcare professionals remained entirely focused on providing expert care despite these challenges. 'Being strong' epitomized the personal and professional impact on healthcare professionals who are working in this area and the manner in which they sustain themselves in 'being focused' and in 'being there'. Conclusions: The healthcare professionals demonstrated their unwavering commitment to deliver quality care required by children and families, however against a background of issues relating to organizational constraints. The findings have implications for education/service providers such as the need for specific palliative care education at both pre‐registration level and continuing professional development. [ABSTRACT FROM AUTHOR]

Background: The i‐THRIVE Programme is a needs‐based model of care, based on the THRIVE Framework, that is being implemented across the United Kingdom with the aim of improving outcomes for children and young people's mental health and wellbeing. This study aimed to investigate the impact that this programme has on accessibility and quality of care, as viewed by key stakeholders. Methods: Interviews with professionals and service users were conducted during the implementation of the THRIVE Framework in four sites of one mental health and community service provider. Results: Three themes are identified: 'impact of needs‐based groupings on referral', 'impact of collaborative and interagency approach' and 'impact of i‐THRIVE on clinical practice'. Findings suggest that accessibility was seen to be promoted through the integration of a needs‐based approach, flexible re‐referral, signposting and information sharing, the use of goal‐orientated interventions and collaboration over risk and treatment endings. Shared decision making was perceived to improve the experience of care for young people, as was interagency working. Goal‐focused interventions and upfront discussion of treatment endings were seen to help clinicians manage expectations and discharge but could also compromise effectiveness and engagement. Obstacles to impact were resistance to interagency working and a shortage of resources across the system. Conclusions: i‐THRIVE is a promising approach with the potential to facilitate the accessibility and quality of mental health care. However, a tension exists between enhancing accessibility and quality of care, which points towards the importance of outcome and satisfaction monitoring. Obstacles to impact point to the importance of a whole‐system approach supported by sufficient resources across the locality. [ABSTRACT FROM AUTHOR]

Background: Youth with chronic illnesses and their parents make complex medical decisions and also need to develop medical decision‐making skills for transition of care to adult care. The use of inclusive (e.g. 'we decided ...') and exclusive (e.g. 'they decided ...') language in youth and parents' medical decision‐making experiences provides insights into perceptions of engagement. This study assessed youth and parents' perceptions of engagement in medical decision‐making about biologic therapy. Methods: This exploratory mixed‐methods secondary analysis of semistructured interview data included youth with juvenile idiopathic arthritis (JIA) and Crohn's disease (CD) and parents. Iterative qualitative coding of interviews generated themes. Exploratory analyses of variance (ANOVAs) and analyses of covariance (ANCOVAs) investigated differences in language use between youth and parents. Results: Parents used more inclusive language in perceptions of medical decision‐making experiences than youth, which exploratory analyses found significant (p < 0.05). Youth used more exclusive language than parents in perceptions of medical decision‐making. Conclusion: This research suggests that youth with chronic illnesses perceived limited engagement in medical decision‐making, with parents perceiving higher engagement. This presents challenges for youth as they prepare for the transition to adult care. Future research should assess how inclusive and exclusive language use impacts psychosocial and health outcomes. [ABSTRACT FROM AUTHOR]

Background: Young children's experiences of everyday life with cancer are vital in guiding care. The universal and interdisciplinary language of the International Classification of Functioning (ICF) and the International Classification of Functioning, Disability and Health for Children and Youth (ICF‐CY) has wide reaching effects for the care of young children in need. The aim of this study was to select and validate the content of a clinical assessment tool (CAT) for health and everyday functioning in young children with cancer. Methods: A comprehensive set of ICF‐CY codes (n = 70) mapping everyday function and health was previously identified from the transcripts of 12 interviews with young children with cancer and their parents at a paediatric oncology centre in the west of Sweden. Three transcripts were from data collected shortly after diagnosis, three transcripts from 6 months after diagnosis, three transcripts from 12 months after diagnosis, and three transcripts from 18 months after diagnosis. The present study involved the development of items based on the ICF‐CY codes. Results: The CAT consists of 52 items grouped in four dimensions: "the child herself/himself," "the child's everyday life," "the child's need for support," and "the child's contacts with health care." Conclusion: The questions correlate well with known research results and highlight areas that are important for health and everyday life for young children with cancer. This tool, based on children's experiences, can be used by both parents and health care personnel such as nurses to highlight aspects of health and function in everyday life for the young child with cancer that otherwise might be missed. This novel approach using the ICF‐CY could be used to guide the delivery of care towards living an everyday life with a long‐term illness. [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: Around 10% of young people suffer from chronic health conditions, and their health care needs are different from those of children or adults. Most research about young people's chronic illness focuses on specific conditions, on younger children's experience, and on the perspectives of parents. This study explored the experiences of young people with two very different chronic conditions (asthma and cancer) and their perception of the New Zealand health system's response to their needs. Methods: This was a collaborative research process where eight young co‐researchers who had asthma or cancer were employed to work alongside the research team to develop protocols, interview peers, and assist with analysis. The challenges of this process are described in the article. Twenty‐one young people between ages 15 and 27 from two urban areas of New Zealand participated in semistructured open‐ended interviews about their health care experiences. Sixteen participants were female, and five male. Eleven of the participants had finished cancer treatment (with an average of 3.6 years since diagnosis), and 10 had asthma. Purposeful sampling meant that 80% of the participants with asthma were identified as Māori and the other participants identified with a range of other ethnic groups. Data were thematically coded, and coresearchers were consulted to derive the ultimate findings. Results: Chronic illness disrupted the trajectory of young people's lives and had significant effects on their relationships. The New Zealand health system generally did not respond well to the needs of these young people, but many encountered extraordinary individuals who supported them effectively. The experiences of some indigenous participants indicate that health professionals require effective cultural competence training. Conclusions: This study provides insights into how young people with very different conditions experience the health system. Young people should be consulted and actively included in decision making about making health systems responsive to their diverse needs. [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 Resource constraints may inhibit the provision of appropriate interventions for children with neurodisabilities presenting with behavioural sleep problems. Telephone calls (TC), as opposed to home visits (HV), may be a more resource efficient means of supporting these families. Objective To conduct a preliminary investigation exploring the feasibility and acceptability of replacing HV with TC to support parents implementing sleep management strategies and to gather evidence to inform the design and methods of a full trial. Methods Parents referred to a sleep management intervention routinely delivered by a community paediatric team were alternately allocated to receive implementation support via HV (n = 7) or TC (n = 8). Activity logs recorded the frequency, duration and mode of support. Parents and practitioners were interviewed about their experiences of receiving/delivering the intervention. Results Intervention drop-out was low, the frequency, number of contacts and intervention duration appeared comparable. Parents allocated TC received less contact time. Parents valued implementation support irrespective of delivery mode and practitioners reported that despite initial reservations, implementation support via TC appeared to work well. Conclusions TC appears an acceptable and convenient mode of delivering sleep support, valued by both parents and practitioners. We recommend a full-scale trial to investigate effectiveness. [ABSTRACT FROM AUTHOR]