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In a sample of youth aged 10–16 years with chronic physical illness, this study examined psychometric properties of a modified Psychological Sense of School Membership (m-PSSM) scale; described longitudinal trends in perceptions over 24 months; and, identified factors associated with school belonging. Youth were recruited from a pediatric hospital in Canada. A total of 105 youth attended school in the past year and provided self-reports. The four-item m-PSSM had a unidimensional structure which was measurement invariant between youth in elementary (10–13 years) versus secondary school (14–16 years). Internal consistency was (ω >.80). There was no evidence that m-PSSM scores changed significantly over time (η2 = 0.05). Predictors of lower perceived school belonging were being in secondary school, having psychopathology, reporting lower quality of life in the domains of social support and school environment, experiencing peer victimization, and living in a community with higher residential instability and lower material deprivation. [ABSTRACT FROM AUTHOR]

Background/Objective: We sought to understand healthcare utilization and barriers to care among youth with chronic illness who interact frequently with the healthcare system. Methods: This was a retrospective analysis of healthcare utilization for youth ≤25 years of age with chronic illness during one calendar year (1 January 2021–31 December 2021) in a single urban academic healthcare system. Inclusion criteria were (1) having at least one healthcare encounter in the calendar year of 2021 and (2) having at least six healthcare encounters over the preceding 3-year period or having a qualifying chronic illness. Demographic and clinical characteristics were collected along with self-reported and derived social determinants of health. Univariable and multivariable regression models were created to identify predictors of missed clinic visits, telehealth use, and activated patient portal accounts. Results: The cohort (N = 14,245) was demographically, clinically, and socioeconomically diverse. The youth had frequent clinic visits (median 9, IQR 4–18), multiple subspecialty care referrals (median 4, 1–8), were prescribed multiple medications (median 6, 3–10), and a high proportion received emergency department (18%) or inpatient treatment (15%). Race and public insurance were significant predictors of missed clinic visits and telehealth use. Primary language was a significant predictor of patient portal activation. Conclusions: Youth with chronic illness who are high users of the healthcare system face a high burden of clinic, emergency room, and hospital visits, referrals, and medications. Systematic efforts to lower the healthcare burden and improve care access should address existing racial and socioeconomic disparities affecting this patient population, who are likely to need frequent healthcare over their lifetime. [ABSTRACT FROM AUTHOR]

Background: The American Academy of Pediatrics recommends that adolescents with chronic health conditions begin to assume responsibility for their own care by age 14. The goal of this qualitative one‐time interview study is to learn how 14‐ to 16‐year‐old adolescents with chronic health conditions begin to develop self‐management skills and the role that caregivers play in the learning process. Methods: Twenty adolescents ages 14–16 with chronic renal (n = 5), gastrointestinal (n = 5), hematologic (n = 5), or rheumatologic (n = 5) diseases, and 20 caregivers (dyads), completed individual semi‐structured interviews discussing the adolescents' current degree of self‐management. Six coders analyzed transcripts using thematic framework analysis. Results: Three primary themes emerged: continuum, motivations, and tools. Both adolescents and caregivers described progress along a self‐management continuum with varying levels of responsibility for the adolescents, ranging from passive to responsible. Caregivers' behaviors similarly varied from directive management to supported self‐management. Motivations for self‐management skills were described in relation to one's health, self, and others. Families utilized a variety of tools to facilitate movement toward supported self‐management with the adolescent. Conclusions: The development of adolescent self‐management of their chronic condition is a complex, shifting continuum between caregiver and adolescent. This continuum may be impacted by adolescent motivation and tools/problem solving available to the family. Pediatric healthcare providers can support self‐management by assessing and attending to each patient's motivations; building a road map individualized to each patient's skills; and offering time in outpatient clinic to practice self‐management strategies. [ABSTRACT FROM AUTHOR]

Background/Objectives: Hope is a universal, multidimensional, and nuanced concept that may have specific meaning for young people living with chronic health conditions anticipated to last into adulthood. We previously identified definitions of hope for youth living with chronic health conditions derived from young people's and their caregivers' own words. Here, we aimed to develop a hope assessment tool to facilitate the future evaluation of interventions to support wellness and health for young people growing up with chronic health conditions; Methods: We developed Likert-type scale questions using the young people's and caregivers' definitions of hope and applied the think-aloud cognitive interview method to assess understanding and to inform sequential iteration. Interviews were recorded and insights from participant interviews were analyzed thematically. Results: In total, 11 youth (age 12–16 years) with various chronic health conditions completed surveys and interviews over three iteration cycles. Responses to the six-point Likert-scale questions ranged from 1 (none of the time) to 6 (all of the time) (median 5). All of the young people (n = 11) reported that they do things they enjoy, either all of the time or most of the time. In contrast, only 36% felt energetic, either all or most of the time. Three themes were identified: my body and hope; my identity, self-image, and hope; and my world and hope. Conclusions: In addition to gaining important feedback that allowed us to improve item word choice to maximize assessment tool understanding, we gained valuable insights into the multidimensional construct of hope. Thematic analysis revealed the importance of physical symptoms and identity to the meaning of hope in the context of a young person's life. Our new hope assessment tool derived from the young people's own definition of hope has face and content validity for use in clinical and research settings to evaluate hope among pediatric patients living with chronic health conditions. [ABSTRACT FROM AUTHOR]

Data on the chronicity of mental disorder in children with chronic physical illness (CPI) are limited. We examined the prevalence and predictors of homotypic and heterotypic continuity of mental disorder in children with CPI. A sample of 263 children aged 2–16 years with physician-diagnosed CPI were recruited from outpatient clinics (e.g., dermatology, respiratory) at a Canadian pediatric academic hospital and followed for 24 months. Parent and child-reported mental disorders (mood, anxiety, behavioral, attention-deficit hyperactivity disorder [ADHD]) were assessed using the Mini International Neuropsychiatric Interview for Children and Adolescents at baseline, 6, 12, and 24 months. Marginal regression models were computed to identify clinical, parent, and demographic factors associated with mental comorbidity over time. Mental disorder was observed in 24–27% of children with CPI based on child reports and 35–39% based on parent reports. Parent-reported models revealed significant homotypic continuity for all mental disorders (ORs = 4.2–9.5), and heterotypic continuity between mood and anxiety disorders (OR = 2.2), ADHD and behavioral disorders (OR = 5.1), and behavioral and each mental disorder (ORs = 6.7–8.4). Child-reported models revealed significant homotypic continuity for mood (OR = 8.8) and anxiety disorder (OR = 6.0), and heterotypic continuity between anxiety and mood disorders (OR = 12.4). Child disability (ORs = 1.3–1.5) and parent psychopathology (ORs = 1.2–1.8) were the most consistent predictors of both child- and parent-reported mental disorder over time. Mental comorbidity was prevalent and persistent in children with CPI with homotypic and heterotypic continuity common across informants. Child disability and parent psychopathology may be priority targets within integrated family-centered models of care to prevent mental comorbidity in children with CPI. [ABSTRACT FROM AUTHOR]

Children and adolescents with chronic health conditions are faced with ongoing challenges, making self-regulation crucial. As children grow up, they gradually develop differentiated beliefs about illness and treatment. While research indicates treatment beliefs as relevant factor on outcomes like adherence, the specific contents and dimensions of children's and adolescents' treatment beliefs remained unclear. This scoping review therefore aimed at the identification of treatment beliefs dimensions in children and adolescents with chronic health conditions, the underlying theoretical frameworks, and methodological operationalisation. Published literature was examined by applying systematic searches in electronic databases (Medline, PsycINFO, CINAHL) and comprehensive selection criteria, resulting in 49 included studies. The predominant treatment beliefs dimensions were necessity, concerns, perceived benefits and costs/barriers, and expectations. The latter can be differentiated into outcome, social, process, and structural expectations, and expectations of one's own role in the treatment process. In addition, dimensions that cover emotions and reasons for treatment were identified. The results are related to the methods and theoretical models applied, which were often adapted from adult research. However, additional and possibly more child-specific dimensions such as social expectations and emotions were found. This scoping review indicates several research gaps and discusses practical implications. [ABSTRACT FROM AUTHOR]

Aim: To identify barriers and facilitators impacting the implementation of a comprehensive transfer program aimed at parents of adolescents with chronic illness in clinical practice. Design: A real‐time, qualitative process evaluation. Methods: Individual interviews were conducted with 10 nurses and seven physicians from paediatric and adult outpatient clinics: Nephrology, hepatology, neurology, and rheumatology. Data were analysed through the lens of normalization process theory. Results: Themes were framed within the theory's four components. (1) Coherence: Healthcare professionals' views on their core tasks and on the parents' role influenced their perception of the program. (2) Cognitive participation: A named key worker, autonomy, and collaboration impacted healthcare professionals' involvement in the program. (3) Collective action: Department prioritization and understanding of the program's aim were key factors in its successful delivery. (4) Reflective monitoring: Participants experienced that the program helped parents during transfer but questioned if the program was needed by all families. Conclusion: We identified three barriers: Healthcare professionals' lack of understanding of the parental role during transfer, top‐down decisions among nurses, and physicians' uncertainty about their role in joint consultations. Facilitators: Healthcare professionals' understanding of the program's purpose and expected effect, the nurses' significant role as named keyworkers, and good collaboration across paediatric and adult departments. Implications for the Profession and/or Patient Care: Implementation strategies should be developed before implementing a transfer program in clinical practice. Impact: Implementing a parental transfer program in clinical practice can be challenging. Therefore, for successful implementation, it is crucial to identify barriers and facilitators.Barriers and facilitators exist at the personal, professional, and organizational levels, and it is important to understand them.The results of this qualitative study could support the implementation of transfer programs in other settings. Reporting Method: Consolidated criteria for reporting qualitative studies (COREQ). Patient or Public Contribution: No patient or public contribution. What does this paper contribute to the wider global clinical community?: Nurses' and physicians' experiences of ownership of the transfer program is essential for successful implementation.Clinics should appoint a named keyworker, preferably a nurse, as the driving force during the implementation of a transfer program.Nurses and physicians should receive training about the purpose, justification, and expected effect of a transfer program before implementation. [ABSTRACT FROM AUTHOR]

Background: This study aims to identify sports interventions for children and adolescents (CaA) with chronic diseases and evaluate their impact on physical, psychological, and social well-being. The findings of this study will contribute to our understanding of the potential benefits of sports interventions for CaA with chronic diseases and inform future interventions to promote their overall health and well-being. Methods: A systematic review was conducted in eight databases. This systematic review followed PRISMA guidelines and utilized a comprehensive search strategy to identify studies on sport-based interventions for CaA with chronic diseases. The review included randomized controlled trials and observational studies that focused on physical and psychosocial outcomes. Results: We screened 10,123 titles and abstracts, reviewed the full text of 622 records, and included 52 primary studies. A total of 2352 participants were assessed with an average of 45 ± 37 participants per study. Among the included studies involving CaA with chronic diseases with an age range from 3 to 18 years, 30% (n = 15) autism spectrum disorders, 21% (n = 11) cerebral palsy, 19% (n = 10) were attention deficit hyperactivity disorder, and 17% (n = 9) obesity. Other diseases included were cancer (n = 5), asthma (n = 1) and cystic fibrosis (n = 1). Interventions involved various sports and physical activities tailored to each chronic disease. The duration and frequency of interventions varied across studies. Most studies assessed physical outcomes, including motor performance and physical fitness measures. Psychosocial outcomes were also evaluated, focusing on behavioural problems, social competencies, and health-related quality of life. Conclusion: Overall, sport-based interventions effectively improved physical and psychosocial outcomes in CaA with chronic diseases. Interventions are generally safe, and participants adhere to the prescribed protocols favorably. Despite that, there is little evidence that interventions are being implemented. Future studies should include interventions tailored to meet the common issues experienced by CaA with chronic conditions, providing a comprehensive understanding of the impact of sports interventions on those affected. Registration: The methodology for this review was pre-determined and registered in the PROSPERO database (registration number: CRD42023397172). Key Points: The study's objective was to examine the impact of sports interventions on CaA with chronic diseases, focusing on physical, psychological, and social well-being. The study's findings showed that sport-based interventions effectively improved physical and psychosocial outcomes in CaA with chronic diseases. Moreover, participants generally adhered favorably to the prescribed intervention protocols. To enhance the impact of sports interventions, future studies should develop tailored interventions addressing the common issues (e.g., limited accessibility and inclusion, psychosocial barriers, variable adherence, etc.) experienced by CaA with chronic conditions, providing a comprehensive understanding of the benefits of these interventions for affected individuals. [ABSTRACT FROM AUTHOR]

The transition from pediatric to adult health care is a vulnerable period for adolescents and young adults (AYA) with chronic conditions as it involves a multitude of changes and challenges while they enter adulthood. The transition to adult care can be particularly challenging for AYA living with chronic kidney disease (CKD) due to the complex care needed for treatment. Continuity of care is crucial for a successful transition to adult health care. The aim of this educational review is to discuss the potential role of primary care providers in the transition from pediatric to adult health services for AYA with CKD and kidney failure treated with dialysis and/or transplant. We address the significance of the medical home model and how it can provide continuity of care for AYA with CKD. Primary care providers can enhance care for AYA with chronic conditions by providing continuity of care, reducing exacerbation of chronic health conditions, providing holistic care, and fostering collaboration with specialists. Despite their vital role, primary care providers face barriers in maintaining this continuity, necessitating further attention and support in this area. By addressing these barriers and encouraging primary care providers to work alongside pediatric and adult nephrologists during the transition to adult health care, there are significant opportunities to improve the care and health outcomes of AYA with CKD. [ABSTRACT FROM AUTHOR]

Background: Young people (YP) with long‐term conditions (LTCs) are at greater risk of psychological distress than those without LTCs. Despite this, there is a scarcity of quality digital interventions designed to help improve mental wellbeing in this population. The aim of this study was to determine what YP, parents and health professionals preferred for future interventions. Methods: Twenty‐six YP with asthma, diabetes and/or epilepsy (the three most common LTCs in YP), 23 parents of YP with LTCs and 10 health professionals mainly in paediatric specialisms (total n = 59) took part in an online Delphi study to gain consensus (set at 75% agreement) on four questions across three rounds. Participants ordered psychological themes that may be experienced by YP with LTCs by importance and ranked digital intervention types and delivery modes by importance or usefulness. The most common results were reported if no consensus was reached by round 3. Results: Participants preferred a mobile phone app (73% agreement) and a mixture of one‐on‐one and group support for an intervention (75% agreement). The two highest ranked psychological themes were anxiety (44%) and wanting to appear 'normal' (38%), and the top intervention type was 'general counselling' (54% agreement). Conclusion: There was a clear desire for an app to help with the psychological aspects of living with LTCs and for a combination of one‐to‐one and group intervention elements. Anxiety and wanting to appear 'normal' might be two closely linked psychological challenges that could be addressed by a single intervention. Implications: The results will be important to consider for a future intervention, although further consultation will be needed for app development. Patient or Public Contribution: Two YP with a LTC provided feedback on the study protocol including the aims and procedures of the project. Another six YP with LTCs were consulted on an early draft of the study questionnaire (the four questions), which was subsequently revised. Once the project began, a patient and public involvement group consisting of two YP with LTCs and one parent of a YP with an LTC gave feedback on the research process, lay report of the results and dissemination plan. [ABSTRACT FROM AUTHOR]

Up to 1 in 3 youth in the United States have a childhood-onset chronic health condition (CHC), which can lead to neurodevelopmental disruptions in cognitive functioning and brain structure. However, the nature and extent of structural neurobiomarkers that may be consistent across a broad spectrum of CHCs are unknown. Thus, the purpose of this study was to identify potential differences in brain structure in youth with and without chronic physical health conditions (e.g., diabetes, hemophilia). Here, 49 T1 structural magnetic resonance imaging (MRI) images were obtained from youth with (n = 26) and without (n = 23) CHCs. Images were preprocessed using voxel-based morphometry (VBM) to generate whole-brain voxel-wise gray matter volume maps and whole-brain extracted estimates of cortical surface area and cortical thickness. Multi-scanner harmonization was implemented on surface-based estimates and linear models were used to estimate significant main effects of the group. We detected widespread decreases in brain structure in youth with CHCs as compared to controls in regions of the prefrontal, cingulate, and visual association areas. The insula exhibited the opposite effect, with cases having increased surface area as compared to controls. To our knowledge, these findings identify a novel structural biomarker of childhood-onset CHCs, with consistent alterations identified in gray matter of regions in the prefrontal cortex and insula involved in emotion regulation and executive function. These findings, while exploratory, may reflect an impact of chronic health stress in the adolescent brain, and suggest that more comprehensive assessment of stress and neurodevelopment in youth with CHCs may be appropriate. [ABSTRACT FROM AUTHOR]

Background: The literature is unclear as to whether children and adolescents with chronic respiratory diseases (CRDs) differ from their healthy peers in physical activity (PA). Objective: To determine the PA levels measured through accelerometers in children and adolescents with CRDs. Methods: The authors conducted a systematic review using five databases. The authors included studies that assessed the PA measured by accelerometers in children and adolescents with CRDs. Two independent reviewers analyzed the studies, extracted the data, and assessed the quality of evidence. Results: From 11,497 reports returned by the initial search, 29 articles reporting on 4381 patients were included. In the sensitivity analysis, the authors found that children and adolescents with CRDs had a moderate-to-vigorous PA (MVPA) of -0.08 hours per day (95% confidence interval [CI], -0.12 to -0.03 h/d; P = .001), which was lower than the healthy controls; the values for sedentary time (mean difference -0.47 h/d; 95% CI, -1.29 to 0.36 h/d; P = .27) and steps/d (mean difference 361 steps/d; 95% CI -385 to 1707 steps/d; P = .45) were similar for both. Conclusion: Children and adolescents with CRDs have a slight reduction in MVPA in comparison with healthy controls, but sedentary time and steps/d were similar for both. [ABSTRACT FROM AUTHOR]

Adolescents commonly experience chronic pain, which can have considerable multidimensional effects on their lives, impacting, for example, their school functioning, leisure activities, sleep, and emotional functioning. Therefore, valid and reliable measurements of these multidimensional and potentially adverse effects, reflecting both the adolescents' and parents' perceptions, are essential. At present, no such measures are available in Iceland. The primary aim of the current study was to translate the Bath Adolescent Pain Questionnaire (BAPQ) and the Bath Adolescent Pain Questionnaire parent version (BAPQ‐P) and evaluate the psychometric qualities of the Icelandic translation. The study's secondary aim was to investigate the multidimensional impact of chronic pain on adolescents with chronic illness using these instruments. Participants were 45 adolescents (11–16 years old) registered in the medical records of the National University Hospital of Iceland with one of the following diagnoses: (1) Crohn's or colitis (IBD); (2) migraine; or (3) arthritis. Sixty‐nine parents of the diagnosed adolescents also participated (a total of 41 adolescent and parent dyads). To establish the psychometric qualities of the BAPQ and BAPQ‐P, participants were asked to complete several questionnaires online. The preliminary results showed that the Icelandic translations of the BAPQ and BAPQ‐P scales have good psychometric qualities, providing valid and reliable measures to assess the multidimensional effects of chronic pain in adolescents in both clinical and research settings. Moreover, the results showed that chronic pain impacts various domains in the adolescents' lives and that the prevalence of anxiety and depression was quite high among them. [ABSTRACT FROM AUTHOR]

This study examined whether the 12-item self-administered World Health Organization Disability Assessment Schedule (WHODAS) 2.0 demonstrated measurement invariance between young adolescents aged 10–16 years with a physical illness and older adolescents aged 15–19 years from the general population. Young adolescent data come from the baseline wave of the Multimorbidity in Youth across the Life-course study (n = 117) and older adolescent data come from the Canadian Community Health Survey-Mental Health (n = 1851). Multiple-group confirmatory factor analysis was used to test measurement invariance. WHODAS 2.0 scores were compared across morbidity subgroups using multiple regression. Measurement invariance of the WHODAS 2.0 was demonstrated: (χ2=635.2(144), p<.001; RMSEA = 0.059 (0.054, 0.064); CFI = 0.967; TLI = 0.970; and, SRMR = 0.068). Adjusting for data source, sex, race, immigrant status, and household income, WHODAS 2.0 scores were associated with morbidity status in a dose–response manner: physical illness only (B = 1.50, p<.001), mental illness only (B = 2.92, p<.001), and physical–mental comorbidity (B = 4.44, p<.001). Measurement invariance of the WHODAS 2.0 suggests that young adolescents interpret the items and disability construct similarly to older adolescents – a group that previously demonstrated measurement invariance with an adult sample. The 12-item self-administered WHODAS 2.0 may be used to measure disability across the life-course. The 12-item self-administered WHODAS 2.0 is one of the most widely used measures of disability and functioning. Measurement invariance of the WHODAS 2.0 suggests that young adolescents interpret the items and disability construct similarly to older adolescents and adults in Canada. Researchers and health professionals can be confident that differences in 12-item self-administered WHODAS 2.0 scores are real and meaningful. The 12-item self-administered WHODAS 2.0 may be used to measure disability across the life-course. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this concept analysis was to define the concept of transitional care as it applied to adolescents with chronic health conditions as they transfer from pediatric to adult care. Design and Methods: Walker and Avant's eight step method was used to guide this concept analysis. An electronic search of the literature using CINAHL, PubMed, and MEDLINE was conducted in March of 2022. Articles were included if they were peer‐reviewed articles published in English between 2016 and 2022 and aided in the development of the concept. Results: A total of 14 articles met inclusion criteria within the search. These articles were used to identify the defining attributes of transitional care as it applied to adolescents with chronic disease. These attributes were empowerment, a comprehensive process, and transfer completion. The antecedents identified were aging, readiness, and support. For an individual to begin the transition process all of these must be present. Consequences include growth, independence, and improved quality of life and health outcomes. Model, borderline, related, and contrary cases were presented to exemplify the concept. Practice Implications: Adolescents and young adults with chronic disease require unique care as they transition to adulthood. Defining the concept of transitional care as it relates to this population provided a foundation of knowledge that has implications for nursing practice. This conceptual structure provided a foundation of knowledge for theory development and encouraged widespread use of transition programs. Future research should explore the long‐term outcomes of specific interventions used during transitional care. [ABSTRACT FROM AUTHOR]

Objective: Adolescents with chronic diseases must navigate changing healthcare needs in college and beyond. This study examined the ability of college youth with type 1 diabetes (T1D) to achieve transition milestones and ascertained sociode-mographic predictors of a successful healthcare transition (HCT). Methods: College youth with T1D were recruited via social media and direct outreach to participate in a web-based study, during which they answered questions about the HCT process. Descriptive statistics and multivariable regression were used to evaluate HCT measures as a function of sociodemographic variables. Results: Nearly two-thirds of participants (N = 138) had discussions with their providers about changing healthcare needs (65.9%) and transferring care to adult physicians (64.5%); less than one-third (27.9%) discussed obtaining health insurance as an adult. Females were more likely than males to discuss tran-sitioning to adult providers (70.3% vs 40.7%, P < .01). Those covered on a parent's insurance (vs other) plan were more likely to receive help with finding adult providers (79.3% vs 44.4%, P = .04) but less likely to discuss how to obtain health insurance (25.0% vs 61.1%, P < .01). These differences persisted after adjustment. Conclusions: Improvement is needed with regard to college youth with T1D becoming autonomous managers of their own care. Gaps were found in their experiences of discussing changing healthcare needs, locating adult providers, and obtaining health insurance--especially among those who were younger, male, and not covered under parental insurance. Efforts to improve the HCT process should focus particularly on these subgroups to advance healthcare delivery in this population. [ABSTRACT FROM AUTHOR]

Purpose: The Covid‐19 pandemic contributed to adverse adolescent mental health outcomes globally. Adolescents with chronic conditions have four times the odds of self‐harm than peers. Little evidence exists to guide pediatric nurses on how to engage this vulnerable population with mental health support as the pandemic continues. In adults with chronic conditions, positive health assets (health access literacy, health self‐efficacy, and emotional well‐being) are directly related to improved patient engagement. The objective of this study was to gain a deeper understanding of engagement with mental health supports in adolescents with chronic conditions to inform practice. Design and Methods: Using mixed methods, we surveyed and interviewed adolescents with chronic conditions aged 10–20 years. Random sampling was applied to avoid bias. Valid and reliable scales were used to measure health access literacy, health self‐efficacy, and emotional well‐being. Textual data were collected using a semistructured interview guide. Integrated data analysis was conducted using structural equation models and interpretive phenomenology. Results: One hundred fifty‐four participants provided numerical data and 17 participants provided textual data (mean age 15.5 years; 56% female, 5.8% agender; 56% White; 16.9% Black or African American, 4.5% Asian; 51.9% Hispanic or Latinx; 23.4% LGBTQ+). The structural model was an acceptable fit for the data (comparative fit index [CFI] = 0.97, Tucker–Lewis index [TLI] = 0.95). Participants reported higher levels of health access literacy (M = 3.88, SD = 0.848) than health self‐efficacy (M = 2.98, SD = 0.646), and engagement (M = 1.78, SD = 1.71). Health access literacy predicted emotional well‐being (β =.33, p <.001, 95% confidence interval [CI] [.20,.50]) and health self‐efficacy (β =.52, p <.001, 95% CI [0.42,.062]). Emotional well‐being positively predicted health self‐efficacy (β =.21, p <.003, 90% CI [0.10, 0.033]). Health self‐efficacy predicted engagement (β =.20, p <.01, 90% CI [0.07, 0.034]). Participants reported not engaging until "it was really, really bad" citing fear, stigma, and lack of connectedness with providers as barriers. Practice Implications: Regardless of health access literacy and health self‐efficacy, adolescents with chronic conditions may not engage until crisis levels. Pediatric nurses can aim to engage with this vulnerable population proactively. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand the challenges and benefits of effective transition from child to adult services for young people and their families • To learn about one trust's experience of implementing a transition pathway using a quality improvement model • To contribute towards revalidation as part of your 35 hours of CPD (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) Healthcare transition involves the purposeful and planned process of preparing, empowering and supporting young people with long-term conditions and their families when they are moving from child to adult services. Transition is a series of events that provides the young person with the knowledge and skills they require to be able to function in adult services. Until recently little has been done to address the perceived barriers and challenges involved in transition. In this article, the authors discuss the challenges associated with effective transition and describe their experience of implementing a healthcare transition pathway using a quality improvement model. [ABSTRACT FROM AUTHOR]

Introduction: The diagnosis of chronic illness in childhood implies frequent hospitalizations and, consequently, the interruption of school attendance. This study aimed to understand the process of school reintegration of children and adolescents with chronic illness from the mothers' perspective. Method: A qualitative descriptive‐exploratory study was conducted with mothers who experienced the process of school reintegration of their child or adolescent, aged between 8 and 17 years old, and diagnosed with chronic illness. The participants were recruited by convenience and interviewed at the paediatric unit of a children's hospital. Data collection was interrupted when the data set was sufficient to answer the research question. The interviews were analysed using inductive thematic analysis. The study was approved by the research ethics committee. Results: Eleven interviews were conducted, 10 with mothers and one with a grandmother, who played the maternal role. Participants' age ranged between 33 and 58 years old. A theme was developed—"School reintegration under the maternal vigilance"—which encompasses four subthemes: (1) What matters? My child's health comes first; (2) How to keep in touch with the school? (3) Back to the school: Are we ready? (4) Sharing vigilance: reality and expectations. The themes highlighted a cyclical, dynamic, and subjective school reintegration process, constantly permeated by maternal vigilance. Conclusion: A new understanding about school reintegration was evidenced, from the perspective of mothers of children and adolescents with different chronic illnesses. Mothers and children experience a nonlinear and recurrent process of leaving and returning to school, surrounded by a lack of communication and continuity in school activities. The results of this study may assist health professionals in planning care focused on the needs of the school reintegration of this population. [ABSTRACT FROM AUTHOR]

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Adolescents with chronic diseases are shown to be vulnerable for risky sexual behavior. Childhood cancer patients seem to engage in risky health behaviors as frequently as general population, but little is known about sexual issues in this group of patients. We characterized the risk for sexually transmitted diseases (STD) in a Finnish population-based cohort of over 6,000 childhood cancer patients diagnosed with cancer under the age of 20 years between 1971 and 2009, compared with over 30,000 age- and sex -matched population comparisons. The data were constructed through linkage between national cancer, population, infectious diseases, and hospital discharge registries. We estimated hazard ratios (HRs) with 95% confidence intervals (CIs) using Cox regression modeling with attained age as the underlying time scale. Childhood cancer patients had a decreased risk for having an infection with chlamydia, the most common STD in our cohort, when comparing with population comparisons (HR 0.77, 95% CI 0.69–0.86). The risk was lowest among male patients (HR 0.64, 95% CI 0.53–0.79) and patients with central nervous system (CNS) tumors (HR 0.46, 95% CI 0.33–0.63). The overall risk for cervical dysplasia was slightly increased among female cancer patients when compared with their population comparisons (HR 1.28, 95% CI 1.02–1.60). Greatest risk elevation was found among patients diagnosed with cancer in ages 10–14 years (HR 2.31, 95% CI 1.46–3.65) and patients with lymphoma (HR 1.95, 95% CI 1.20–3.16). The risk for all explored outcomes seemed to be decreased among patients with CNS tumors. Our findings highlight the importance of integrating sexual issues as a part of psychosocial support and having a systematic transition program in the follow-up care of childhood cancer patients. [ABSTRACT FROM AUTHOR]

The purpose of this discussion is to provide an overview of psychosocial adaptation to chronic illness and disability (CID) with a special focus on cystic fibrosis as it pertains to children and adolescents. Understanding psychosocial adaptation to chronic illness and disability in general provides the medical team and mental health providers' basic information regarding the factors impacting adaptation; also, the focus on cystic fibrosis provides information regarding the specific factors related to cystic fibrosis in conceptualizing how these factors impact their patients and ultimately designing as well as implementing effective treatment. The importance of understanding how psychosocial factors impact adapting to CID for children and adolescents cannot be stressed enough as physicians are often the first provider these patients visit. Additionally, many patients may not understand the connection between psychosocial factors and problems associated with cystic fibrosis and not consider seeking out mental health services without the encouragement from the medical team. The necessity of multidisciplinary teams is stressed due to the fact that CID as well as cystic fibrosis impacts the whole person (physiologically, psychologically, psychosocially, and environmentally) and teams need to include professionals who can adequately address all of these factors. Definition, overarching concepts, coping strategies, assessment, and interventions are considered in this document. [ABSTRACT FROM AUTHOR]

Background: Caring for a youth with complex care needs (CCN) who is transitioning from paediatric to adult healthcare can produce many challenges. For example, caregivers must often manage their youth's care at home, coordinate care and advocate for their youth. Experiences of fragmented and uncoordinated care often result in caregivers feeling ill‐prepared and uncertain about the transition process. The current study explores caregiver experiences with the transition from paediatric to adult healthcare for youth with CCN in a semi‐rural Canadian province. Methods: This study used a cross‐sectional qualitative descriptive design, involving semi‐structured interviews with caregivers of youth with CCN who were preparing for, in the process of, or completed a transition from paediatric to adult healthcare within the province of New Brunswick, Canada. Thematic analysis focused on describing caregiver experiences with the transition from paediatric to adult healthcare. Results: Seventeen caregivers completed interviews for this study. Four key themes emerged relating to caregiver experiences with the transition from paediatric to adult healthcare for these youth: (1) lack of caregiver support, (2) lack of continuity of care, (3) need for collaborative care and (4) difficulty navigating transition. Conclusion: There is a clear need to address the challenges experienced by youth with CCN and their caregivers throughout the transition from paediatric to adult healthcare. An effective transition strategy should involve early and coordinated planning between the paediatric and adult care team; continued communication across the care team throughout the transition process; and coordination among health, education and social services. [ABSTRACT FROM AUTHOR]

An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of the symptoms that comprise mental conditions often observed in children with chronic illness or at the end of life. It further provides some guidance to help clinicians distinguish normative from pathological presentations. Evidence-based psychotherapy interventions, potentially applicable to the acute inpatient setting, are briefly summarized. Broad recommendations are made regarding both psychotherapeutic as well as pharmacotherapeutic interventions, with a review of common or serious medication side effects. Finally, delirium recognition and management are summarized. [ABSTRACT FROM AUTHOR]

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The aim of this paper is to illuminate findings of disclosure experiences for youth living with chronic illness using a non-categorical approach. The findings were derived from a larger qualitative study framed by social constructivist grounded theory that sought to understand youth's involvement in healthcare decision-making in the context of chronic illness. Fifty-four youth participated in the study, ranging from 9 to 24 years. Three main themes representing the youth's perspectives and experiences of disclosing chronic illness were identified: (1) disclosure is central to the illness experience; (2) spectrum of disclosure; and (3) navigating others' reactions to disclosure. The findings reinforce that more emphasis on decisions related to disclosing illness in research and clinical care for youth with chronic conditions is warranted. [ABSTRACT FROM AUTHOR]

Objective: to know the experiences of family members of adolescents diagnosed with Type 1 Diabetes Mellitus, related to coexistence, care, and changes generated by the chronic disease. Method: qualitative study conducted between November 2017 and May 2018 with 48 family members of adolescents with Type 1 Diabetes Mellitus, members of the social network Facebook. Data analyzed according to content analysis. Results: most participants were mothers, living in the Midwest of Brazil, aged between 41 and 60 years, with a college degree, and employed. Three categories were constructed to address family coexistence, constant care, and adaptations required by the chronic disease. Final considerations: family members of adolescents diagnosed with Type 1 Diabetes Mellitus experienced daily challenges, permeated by difficulties, fears, guilt and uncertainty about the future. Among the challenges were highlighted the changes resulting from the chronic condition in the routine, constant care, exclusive dedication to the teenager. The chronic disease enabled the adoption of healthy lifestyle habits and greater family complicity. [ABSTRACT FROM AUTHOR]

Objective: To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. Methods: We retrospectively identified children aged 1 to 17 years diagnosed with a CCC who were discharged from our rural tertiary care children's hospital between 2017 and 2018 with a diagnosis meeting published CCC criteria. Patients discharged from the neonatal intensive care unit and patients enrolled in a care coordination program for technology-dependent children were excluded. Results: Of 113 eligible patients, 77 (68%) had outpatient follow-up consistent with discharge instructions. Intensive care unit (ICU) admission (P =.020) and prolonged length of stay (P =.004) were associated with decreased likelihood of completing recommended follow-up. Conclusions: Among children with CCCs who were not already enrolled in a care coordination program, ICU admission was associated with increased risk of not completing recommended outpatient follow-up. This population could be targeted for expanded care coordination efforts. [ABSTRACT FROM AUTHOR]

The impact of body composition on the early origin of chronic diseases is an increasingly appreciated phenomenon. Little is known about the characteristics of children with varying body composition. The aim of this study was to investigate serum lipid profiles and other characteristics in relation to body composition. The data of 1394 participants (aged 6 to <18 years) of the observational general population-based Austrian LEAD Study have been analyzed. Body composition groups were defined by appendicular lean mass (ALMI) and fat mass (FMI) indices assessed by DXA. Serum lipid profiles (triglycerides, LDL-c, HDL-c) and other characteristics (e.g., prematurity, smoke exposure, physical activity, nutrition) were investigated in these body composition groups. Different body composition groups, which are not distinguishable by BMI, exist. Children with high ALMI and high FMI showed higher triglycerides and LDL-c, but lower HDL-c levels. In contrast, levels did not differ between those with high FMI but low (or normal) ALMI, and other body composition groups. BMI should be interpreted cautiously, and body composition should be measured by more precise techniques. In particular, children and adolescents with high FMI who have concomitantly high ALMI should be followed closely in future studies to investigate whether they are at increased risk of cardiovascular problems. [ABSTRACT FROM AUTHOR]

Aim: To assess what is known about the effectiveness of face‐to‐face self‐management programmes designed specifically for adolescents (10–19 years) with a chronic illness. Design: A systematic review and synthesis without meta‐analysis (SWiM). Data sources: Six international web‐based reference libraries were searched with a date range of 1946 to July 2020. Review method: The PRISMA statement and SWiM guideline were used for reporting the methods and results. The PICO format was used to develop a focused clinical question and the eligibility criteria of our review. Quality assessment of the included studies was performed using the Cochrane Effective Practice Organisation of Care criteria. Results: Eight studies (four randomized controlled trials and four descriptive designs) met the inclusion criteria and were published between 2003 and 2017. Results of the review: Three studies demonstrated measures of illness control which showed initial improvements in adherence as a result of the interventions but failed to demonstrate sustained adherence over time. Booster sessions were identified as an effective strategy to improve adherence, but were often omitted. Conclusions: There is a limited body of evidence on the effectiveness of self‐management programmes specifically developed for adolescents with a chronic illness, an important but under researched area. Future research lies in the development of more rigorous studies that focus on quantitative outcome measures for evaluating the effectiveness of self‐management programmes to guide the development of future programmes. Impact: It is crucial for adolescents with a chronic illness to develop independence and the self‐management skills required to effectively manage their chronic condition as they transition to adulthood. On current evidence, in planning future self‐management interventions should include booster sessions. Nurses with additional training and experience have a key role in supporting adolescents with a chronic illness to develop self‐management skills as they assume responsibility for their own healthcare. [ABSTRACT FROM AUTHOR]

Background: Depression becomes increasingly common in adolescence. Around 10%–20% of adolescents have a chronic illness, and they are more likely to experience depression. There is emerging evidence for cognitive behaviour therapy (CBT) interventions to treat depression in adolescents with chronic illnesses, yet no review has been undertaken of how these CBT interventions are delivered in practice. Methods: We conducted a scoping review to summarise how CBT has been delivered in adolescents with chronic illness and depression. We included studies that evaluated CBT aimed at treating depression/depressive symptoms in adolescents with chronic illness. Searches were carried out across Embase and PsycNET. Results: Twelve studies met our inclusion criteria. These included diabetes (n = 3), inflammatory bowel disease (n = 3), polycystic ovary syndrome (n = 2), chronic headache (n = 1), chronic pain (n = 1), chronic fatigue syndrome (n = 1) and Fanconi anaemia (n = 1). Adaptations made to the delivery of CBT included cognitive restructuring of illness‐related thoughts, behavioural activation balancing illness‐related and enjoyable activities, psychoeducation of the comorbidity and link between the chronic illness and depression, relationship building, skill building and parental or familial involvement. CBT was typically delivered by trained professionals with expertise in working with adolescents, who worked under supervision. Conclusions: CBT for depression is commonly adapted for this population, and the nature of cognitions and behaviours targeted in CBT may typically depend on how the chronic illness presents. There is relatively little evidence to date, and a need for more research into the efficacy and effectiveness of treatments for adolescent depression in this vulnerable population specifically. [ABSTRACT FROM AUTHOR]

Aim: The purpose of this study was to examine the reliability and validity of the Korean version of the Illness Cognition Questionnaire. Methods: A total of 237 adolescent Participants ages 13–20 years were collected from two hospitals for purposes of the study. The participants were diagnosed with blood cancer, congenital heart disease, paediatric rheumatoid arthritis, multiple sclerosis and diabetes mellitus. Results: The Illness Cognition Questionnaire is composed of three subscales and 18 items. Exploratory factor analysis and confirmatory factor analysis were performed for all 18 items. The data used in the exploratory factor analysis were obtained from 126 adolescents with blood cancer. The data used for confirmatory factor analysis were obtained from 111 adolescents who had chronic diseases. The three‐factor model of 18 items showed general fitness close to the standard but not a very good fit. Conclusions: This study indicated that the Korean version of the Illness Cognition Questionnaire is reasonable to use for Korean adolescents with chronic illness. The authors recommend that the meaning of Item 10 be clarified from 'I have learned to accept the limitations imposed by my illness' to 'I have learned to positively accept the limitations imposed by my illness'. SUMMARY STATEMENT: What is already known about this topic? Illness cognition is the process of evaluating the meaning of a negative event.Illness cognition has a significant impact on patients' quality of life because it is inherently involved in long‐term stresses caused by chronic or serious illnesses. What this paper adds? The Korean version of the Illness Cognition Questionnaire is reliable and valid.The Korean version of Illness Cognition Questionnaire consisted of three categories of disease awareness: acceptance, helplessness and perceived benefitsThe meaning of Item 10 in the Illness Cognition Questionnaire Korean version needs to be clarified as 'I have learned to positively accept the limitations imposed by my illness'. The implications of this paper: The Korean version of the Illness Cognition Questionnaire can be used for adolescent participants experiencing serious or chronic illnesses.The Korean version of the Illness Cognition Questionnaire can be used in developing the psychological intervention for adolescents with chronic illness. [ABSTRACT FROM AUTHOR]

Background: Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) receives increasing attention. However, evidence of its impact is lacking. This study explores the impact of PPI on outcomes of projects in health and social care, using quantitative measures. Methods: Data were collected from projects funded by a 4‐year participatory program addressing the social position of YPCC. These projects addressed challenges associated with, for example, going to college with a physical disability, transitions in care and finding a job. Project coordinators filled out project reports with questions about PPI, that is, to what extent were YPCC involved, were they involved as co‐deciders and were they involved in developing the project idea. YPCC filled out questionnaires with questions about PPI, that is, the number of PPI activities and self‐perceived importance for the project. They also answered questions about the influence of the project on their social position. Based on these questions, a project outcome scale was developed. Results: The data concerned 17 projects and 146 YPCC. Variation existed in project outcomes, of which 27% was associated with differences between projects. Using multilevel analyses, a significant relation was found between the self‐perceived importance of YPCC for the project and the project outcomes they experience (0.232, p < 0.01). There was no significant association with the other PPI variables. Conclusions: This study provided some first quantitative evidence that PPI has a positive impact on the YPCC involved. It is suggested that the meaningfulness of PPI matters more to them than the number of activities and amount of influence provided to YPCC. We strongly recommend conducting more research that critically examines impact of PPI. [ABSTRACT FROM AUTHOR]

Background: Despite the increasing number of studies using photo-elicitation for data collection in qualitative research, there is a need to further explore its use among families of children and adolescents living with chronic illness. Objective: The aim of this study was to discuss methodological and pragmatic considerations about the use of photo-elicitation interviews (PEIs) for data collection with families of children and adolescents living with chronic illness. Methods: We discussed methodological aspects of using PEIs as reported in publications. A search of the literature was carried out to identify articles presenting information on methodological aspects of the use of PEIs in qualitative data collection, regardless of age group. In pursuit of complementing the evidence with pragmatic considerations of using PEIs, we illustrate with an example of a recent qualitative study of our own that aimed to understand the narratives about hope of families of children and adolescents living with chronic illness. Results: We synthesized common aspects that need to be considered when using PEIs with different populations: ethical issues, cameras, guidance, and interviews. We also presented our experience of using the PEI technique to collect data from families. Because of our experience, we denominate our method as the "family photo-elicitation interview" (FPEI). Our method goes beyond the PEI technique because it integrates aspects of family nursing theories when conducting interviews with families. FPEIs strengthen family interaction and allow family members to share their perspectives. Discussion: We present a new perspective of PEIs—the FPEI—in the pediatric context. Previous studies have not addressed considerations about using PEIs for families. We hope our results assist novice researchers in planning and implementing FPEIs in qualitative research. We recommend that researchers explore the use of FPEIs in other contexts, such as geriatrics or palliative care. [ABSTRACT FROM AUTHOR]

Background: Mindfulness and acceptance interventions (MAIs) have been identified as potentially beneficial for parents of children and adolescents diagnosed with chronic medical conditions. Objective: The objective of this review was to provide a descriptive summary of the existing literature on MAIs delivered to parents of children and adolescents diagnosed with chronic medical conditions. Data sources: Electronic searches were conducted by a Library Information Specialist familiar with the field by using EMBASE, MEDLINE, PsycINFO, EBM Reviews Databases, and Cochrane Database of Systematic Reviews. Study eligibility, participants, and interventions: Peer-reviewed journal articles of MAIs delivered to parents of children and adolescents (birth to 18 years of age) diagnosed with a chronic medical condition were eligible for inclusion. Study appraisal and synthesis methods: A total of 18 studies involving 793 parents met inclusion criteria and thus were included in this review. The majority of studies were either pre/post design (n = 8) or randomized controlled trials (n = 6). Most interventions were delivered within a group (n = 6) or individually (n = 5). Nearly all studies (n = 14) reported statistically significant outcomes following the MAI intervention. Conclusions and implications of key findings: Descriptive information yielded from this review provides promising evidence that MAIs are being delivered to parents across the world and many researchers are using similar outcome measures when assessing the psychological flexibility, acceptance, and mindfulness skills following participation in MAIs among this population of parents. [ABSTRACT FROM AUTHOR]

Telehealth distance health care is a significant resource for young, chronically ill patient populations given their numerous medical complexities and their concomitant depression and/or suicide ideation experiences. This manuscript shares the telehealth methods used to prepare for a larger study of interventions for increasing adolescents' and young adults' chronic care resiliency and skills for preventing depression. The young patients in this study were prescribed lifelong home parenteral nutrition infusions, treatment for those with short gut bowel diseases. The training methods for our mental health nurse and psychologist to conduct depression and suicide ideation assessments from a distance are presented. The study implementation methods of group facilitated interventions and discussion are reviewed. The group discussions were conducted via audiovisual telehealth devices over encrypted firewall‐protected connections with patients in their own homes and professionals in an office. The results of assessments of the 40 participants, 25% (n = 10) with depressive symptoms or suicide ideation, are described. Following participants' assessments, their subsequent depression measures were all in the normal range, without any suicide ideation, across the year of the study. Patient evaluation ratings were high in the areas of being able to connect with other young patients in similar situations, using the audiovisual equipment, and learning new useful information from the interventions. The methods developed for the study ensured that the safety and well‐being of participants were supported through telehealth. [ABSTRACT FROM AUTHOR]

Objective: to analyze narratives about the experience of hope of families in the context of pediatric chronic illness. Method: a narrative research using Family Systems Nursing as a conceptual framework. Three families of children and adolescents diagnosed with complex chronic illness participated in this study, totaling 10 participants. Data collection was developed using family photo-elicitation interviews. Family narratives were constructed and analyzed according to inductive thematic analysis with theoretical data triangulation. Results: the analytical theme - Waves of Family Hope in the Context of Pediatric Chronic Illness - is composed of four different types of hope: uncertain hope, caring hope, latent hope, and expectant hope. Movement through these hopes generates a driving energy and depends on a number of factors: support, information, searching for normality, and thoughts and comparisons. Conclusion: the results highlight the interaction and reciprocities of the members of the family unit, and the dynamics of hope, and illustrate the different types of hope and the factors that influence them. This study highlights the experience of hope as a family resource rather than just an individual resource, and supports health professionals in the planning of family care considering hope as an essential and dynamic family resource. [ABSTRACT FROM AUTHOR]

This study examined associations between chores engagement, self-management, and transition readiness in youth with chronic conditions. Youths with various chronic conditions attending a therapeutic camp, and their parents participated. Responses of 165 campers and their parents were analyzed (mean camper age 12.3 ± 2.6 years, 47.9% males, 79.4% White). The most common diagnoses were diabetes, spina bifida, cerebral palsy, and sickle cell anemia. Youth who completed chores manifested higher overall health care transition readiness ( β ^ = 5.17, p =.026) and better communication with providers ( β ^ = 2.98, p =.006) than youth who completed no chores. Higher chores frequency was not more predictive of higher health care transition readiness scores above and beyond the effects of having chores at all. These results suggest that responsible health care behaviors are related to similar actions in other areas of life. Assignment of chores may promote self-management and health care transition readiness in youth with chronic conditions. [ABSTRACT FROM AUTHOR]

Initial evidence suggests that the WHO Disability Assessment Schedule (WHODAS 2.0) is valid and reliable in general youth populations; however, its psychometric properties in specific subgroups are less established. The primary objective was to test for measurement invariance of the 12-item WHODAS 2.0 in an epidemiological sample of youth aged 15 to 19 years with and without physical or mental conditions. Using data from 1,851 youth in the Canadian Community Health Survey–Mental Health, invariance was tested using multiple-group confirmatory factor analysis. Within-domain item correlations were significant and ordinal coefficient alphas were.91,.94,.93, and.92 for the healthy control, physical, mental, and comorbid groups, respectively. Partial measurement invariance was demonstrated for the WHODAS 2.0, with evidence of noninvariance for item residuals and factor variances related to cognition and participation. While these domain-specific comparisons may be biased, valid comparisons of overall disability across subgroups of youth can be made with confidence. [ABSTRACT FROM AUTHOR]

Purpose: Adolescent and young adults (AYA) with cancer encounter many medical treatment decisions but may have variable desires for involvement in decision-making. This study describes the degree of decisional control AYA patients preferred in complex medical decisions. Methods: A cross-sectional descriptive correlational design evaluated experienced AYA patients' decision-making role preferences using the Control Preference Scale and explored relationships in a proposed model of decision control. Results: Overall, most patients preferred an "active collaborative" role (39%), where the patient prefers to make the final decision with input from the provider, or a "shared decision-making" role (34%), wherein the decision is jointly made between patient and provider. Oncology AYA patients tended to prefer a more passive role than nononcology AYA patients. Time since diagnosis also positively correlated with control preference, with patients preferring a more active level of decisional control as the number of days from diagnosis increased. While no other statistically significant relationships were found between factors put forth in the exploratory model and decision control, there were strong associations between the factors themselves that warrant future study. Conclusion: The findings advance the knowledge of AYA preferences for decision-making involvement, enhancing our ability to identify patients at risk for low health care engagement and explore the consequences of limited or impaired decisional capacity. Future research might examine interventions to promote self-management skills and patient decisional role preferences, fulfilling the need to respect both the desire for decision-making involvement of some patients and the preference to defer to the expertise of providers for others. [ABSTRACT FROM AUTHOR]

Background: The involvement of young people with a chronic condition in research and implementation projects in health and social care receives growing attention. Yet, there is a lack of conceptual clarity of this so‐called 'Patient and Public Involvement' (PPI) and methods to systematically evaluate it are absent. This scoping review aimed to gain insight into developments in the existing literature on PPI of young people with a chronic condition by mapping reported definitions, goals, activities, experiences and impact. Methods: We conducted searches in Cinahl, Embase, PsycINFO, PubMed and Scopus. Included articles described involvement of young people with a chronic condition in research and implementation projects, contained empirical data, were written in English and were published after 1990. Two researchers independently carried out the data extraction. Results: Twenty‐three studies out of 4993 initial hits met the inclusion criteria. We found great variation in definitions and operationalizations of PPI. Reflections of authors on the process of PPI and its impact were similar and did not change over the years. Discussion and conclusion: Limited progress in the evidence base of the impact of PPI with young people with a chronic condition was found. Over the years, studies continue to report similar experiences and challenges. In order to move forward, we suggest future research to make connections to existing work instead, to include thorough descriptions of what is understood by PPI and how this is translated into activities, and to use systematic and objective, but also flexible, methods to measure its impact. [ABSTRACT FROM AUTHOR]

A growing number of families with children are dealing with a new diagnosis of chronic illnesses or health problems that are demanding. Nurses are in a prime position to provide support and empowerment to these families. The aim of the study was to evaluate the benefits of two sessions of a Family Strengths Oriented Therapeutic Conversation (FAM-SOTC) intervention, offered by advanced practice nurses (APNs) to mothers (N = 31) of children and adolescents in Iceland with newly diagnosed chronic illnesses/disorders. Families of children with Juvenile Idiopathic Arthritis (JIA), epilepsy, Type 1 diabetes (T1DM), or with sleep disturbance with attention-deficit/hyperactivity disorder (ADHD), reported significantly higher family support, greater conviction about their illness beliefs, increased quality of life, and greater satisfaction with health care services after receiving two sessions of the FAM-SOTC intervention (Time 2) compared to before the intervention (Time 1). The findings emphasize the importance of the APN's role and family nursing expertise in supporting families of children with a new diagnosis of chronic illnesses or disorders who are in active treatment. [ABSTRACT FROM AUTHOR]

The transition of chronically ill adolescents and young adults to adult health care is poorly managed, leading to poor outcomes due to insufficient disease knowledge and a lack of requisite skills to self-manage their chronic disease. This review analyzed 33 articles published between 2009 and 2019 to identify factors associated with transition readiness in adolescents and young adults with chronic diseases, which can be used to design effective interventions. Studies were predominantly cross-sectional survey designs that were guided by interdisciplinary research teams, assessed adolescents and young adults ages 12–26 years, and conducted in the outpatient setting. Modifiable factors, including psychosocial and self-management/transition education factors, and non-modifiable factors, including demographic/ecological and disease factors, associated with transition readiness were identified. Further research is necessary to address gaps identified in this review prior to intervention development, and there is a need for additional longitudinal studies designed to provide perspective on how transition readiness changes over time. [ABSTRACT FROM AUTHOR]

Background: Providing interventions, and implementing of best-practice care for patients with chronic diseases is of greatest challenges currently facing primary care providers. This study aimed to evaluate the quality of primary health care(PHC)services for adolescents with chronic diseases in Kirkuk city. Methodology: A descriptive (quantitative design) was conducted through (18) primary health care centers (PHCCs) in Kirkuk city. A questionnaires was designed for the purpose of the study. A simple random sample of organization structure PHC services (18) health professional were selected through the use of probability sampling approach. Data were analyzed is performed through the use of descriptive statistical data analysis approach. Results: The overall evaluation of quality of PHC services in Kirkuk city is adequate on (77.7 %: N=14), fair on (16.7 %: N=3) and Inadequate on (5.6%: N=1). Domains such as quality of health service represent high mean of scores on its items, Except on 2 items of Tangibles and on items of Responsiveness 2 on from the quality of PHC are low. Conclusion: The study indicates that the quality of PHC services does not execute impact upon adolescents' health status. This study depict that the evaluate of the quality of PHC services is adequate relative to all of its dimensions of general health status, tangibles, accreditation, responsiveness, assurance and empathy. [ABSTRACT FROM AUTHOR]

Background: The way adolescents with chronic illness (ACI) cope with adversity is associated with their resilience potential, which is also built through the relationship established with nurses. Objectives: To identify resilience-promoting nursing interventions in ACI; to assess resilience in ACI; and to establish an association between their level of resilience and the received interventions. Methodology: An exploratory sequential mixed-methods study was conducted. First, a qualitative study was conducted with a focus group of 8 nurses from a pediatric hospital, resulting in a list of resilience-promoting nursing interventions (LIER). Then, a quantitative study was conducted where a questionnaire was applied to 32 ACI (including the Resilience Scale and the LIER obtained in the first study). Results: Nurses reported several resilience-promoting nursing interventions. In a sample of 32 ACI, the level of resilience was average and higher in the adolescents with neurological diseases and in girls. A low correlation was found between the level of resilience and the nursing interventions. Conclusion: The results should be disseminated, and increased investment should be made so that the promotion of resilience in ACI clearly results from nursing interventions. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this integrative review was to synthesize previous research on perceptions of school health care among school-aged children and adolescents with chronic diseases. Methods: This study was performed in accordance with Whittemore and Knafl's stages of an integrative review (problem identification, literature search, data evaluation, data analysis, and presentation of the results). Four databases (PubMed, CINAHL, Embase, and Web of Science) were used to retrieve relevant articles. Results: Eighteen articles were included in this review. We identified five thematic categories: peer-related issues, a safe school environment, self-perception of an existing disease, self-management, and a supportive school environment. Conclusion: It is necessary to establish a school health care system with a supportive environment for children and adolescents with chronic diseases. [ABSTRACT FROM AUTHOR]