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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]