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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: 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]