Search

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/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]

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]

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]

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]

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]

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]

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]

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]

ABSTRACT: BACKGROUND: Existing research demonstrates that youth with chronic illness often experience challenges including poor academic performance, attendance, and social success. However, past research demonstrates a lack of support for teachers to best educate students with chronic illness. In this study, we aim to describe the needs of local educators when working with students with chronic illness. METHODS: A questionnaire was completed by 383 middle or high school professionals. Responses were analyzed using descriptive statistics. ANOVA was used to examine differences between school professional groups and chronic illness types. RESULTS: Participants tended to disagree that students with chronic illness faced challenges in school and agreed that they had enough support to meet students' needs. They tended to agree that more collaboration between the health care team, schools, and families was needed. Participants reported feeling least prepared in working with students who had cystic fibrosis, epilepsy, or sickle cell disease. School nurses were more likely to recognize the challenges, supports, and collaboration needed. CONCLUSIONS: More training and support is needed for school professionals in their work with students with chronic illness. Assessments may be useful at a local level to help schools develop better policies and plans for educating youth with chronic illness. [ABSTRACT FROM AUTHOR]

Purpose: Health-related quality of life (HRQoL) is an important patient-reported outcome in clinical and health research. The EQ-5D-Y assesses child and adolescent HRQoL by five items on mobility, self-care, usual activities, pain/discomfort, and anxiety/depression as well as a visual analogue scale (VAS) on the current health state. This study investigates predictors of self-reported HRQoL according to the EQ-5D-Y in chronically ill children and adolescents using longitudinal data.Methods: Data from the German Kids-CAT study on children and adolescents with asthma, diabetes, and juvenile arthritis gathered over a period of six months were analyzed (n = 310; 7-17 years old; 48% female). Self-, parent-, and pediatrician-reported data were collected from June 2013 to October 2014. Generalized linear mixed models and linear mixed models served to examine effects of socio-demographic as well as disease- and health-specific predictors on the items as well as on the VAS of the EQ-5D-Y.Results: Ceiling effects for the EQ-5D-Y indicated low burden of disease in the analyzed sample. Longitudinal analyses revealed associations between less health complaints and better HRQoL for all investigated HRQoL domains. Further, age- and gender-specific effects, and associations of better disease control, longer duration of the disease and less mental health problems with better HRQoL were found.Conclusions: Subjective health complaints and mental health problems should be considered in the care of children and adolescents with asthma, diabetes, and juvenile arthritis. Future research should suggest administering the items of the EQ-5D-Y with five instead of three response options, and investigate HRQoL over a longer period. [ABSTRACT FROM AUTHOR]

ABSTRACT: Measuring adolescent patients’ engagement in their health care is especially important in preparing for chronically ill adolescents’ transition into adult care. In this study, we aimed to create an adolescent version of the German language Patient Activation Measure (PAM‐13‐D) originally tested in in adults and psychometrically test the adapted measure (PAM® 13 for Adolescents). After linguistic and content‐related adaptations, the PAM® 13 for Adolescents was tested in a large sample of adolescents with different chronic conditions (N = 586, mean age 17.5 years, SD = 1.4) in 40 health centers. Internal consistency was assessed with Cronbach's alpha and test–retest reliability with Pearson correlation. Convergent and divergent validity were calculated with Pearson correlations between the two IE‐4 scales (internal and external Locus of Control) and the PAM® 13 for Adolescents. Known‐group validity (type 1 diabetes vs. IBD, higher vs. lower education level) was checked by Mann–Whitney‐U‐tests. The PAM® 13 for Adolescents showed good test–retest reliability (rtt = .68), internal consistency (α = .79) and demonstrated good validity. The original structure of the PAM 13‐D was replicated. Rasch analysis using the partial credit model was used to investigate the operating characteristics of the items. Rasch analysis indicated a sufficient fit of 12 of the 13 items. PAM® 13 for Adolescents is the first instrument measuring patient activation of adolescents with chronic conditions in a broad age range. Patient activation level can be used by clinicians to better plan and structure transition processes. [ABSTRACT FROM AUTHOR]

Aims and objectives To examine how children with chronic medical conditions view healthcare education and decision-making and to propose the application of the universal design for learning in paediatric settings. Background Children and adolescents with chronic medical conditions tend to be excluded from healthcare decision-making. In schools, the universal design for learning promotes access to education and participation in school communities for all children, regardless of their disabilities or medical needs, rendering it an appropriate model for children's participation in healthcare decision-making. Design This article presents findings from a qualitative study with 26 children and adolescents with chronic medical conditions about their views and experiences with healthcare education and decision-making. Methods Twenty-six children and adolescents with chronic medical conditions were interviewed using semi-structured interviews. Results Findings provide evidence that clinical practices often fail to provide equal opportunities for paediatric patients to understand their condition, share their views and/or participate in decisions regarding their care. Conclusions In response to ongoing concerns about paediatric decision-making, we propose that the universal design for learning be adapted in paediatrics. The model presents exemplary programmes as inclusive, accounting for the needs of all children through multiple means of engagement and expression. Relevance to clinical practice A discussion of how the principles of universal design for learning could be applied in paediatric settings is offered for the purpose of advancing ethical and psychosocial care for all children regardless of their age, developmental capacity or condition. [ABSTRACT FROM AUTHOR]

The transition of adolescents with chronic conditions is a challenging task. This study aimed to explore the experiences and needs of adolescents with chronic conditions in the transition period and to apply these findings to the design of a generic patient education programme. Data were collected from a sample of 29 adolescents with chronic conditions from Northern Germany and Switzerland including a broad range of views due to variation in disease management and organisation of care both in paediatric and adult populations. Participants were interviewed in group ( n = 18) or individual ( n = 11) interviews between September 2011 and February 2012, and the data were analysed using qualitative content analysis. The findings revealed that the interviewees expressed high levels of competency in the management of their chronic conditions but identified gaps in healthcare and unmet needs during transition. In particular, they believed that they would benefit from opportunities to exchange ideas and more specific information with peers about vocational and medical issues concerning adolescent health. Identified themes reflecting adolescent needs were used to develop the transition workshop including modules regarding the following: transfer to adult medicine, their new role as a patient, orientation within the healthcare system, vocational issues, detachment from parents, social support, contraception, substance abuse, family planning, stress-management, activation of resources and developing personal goals. The workshop's content was largely generic and included some condition-specific components. The workshop was designed as a compact 2-day patient education programme in a group setting for adolescents prior to their transfer to adult care. The guiding principle was the idea of empowerment by supporting the adolescents through various interactive methods to develop adequate knowledge, skills, understanding and motivation regarding their chronic conditions. We conclude that patient education programmes promoting adolescent self-management and empowerment increase the preparedness for transition. [ABSTRACT FROM AUTHOR]

Background The numbers of children with long-term illnesses surviving into adulthood and transferring from child to adult services has increased dramatically in the last 30 years. This study aimed to examine health-related quality of life pre- and post-transfer from child to adult healthcare for young people with three long-term illnesses. Methods A total of 217 young people with cystic fibrosis, congenital heart defects or diabetes attending child and adult hospital services in Dublin, Ireland completed a questionnaire survey. Multiple linear regression was used to identify predictors of five dimensions of health-related quality of life pre- and post-transfer. Results Post-transfer young people with congenital heart disease and diabetes reported significantly lower physical well-being than their pre-transfer counterparts. Pre-transfer young people with cystic fibrosis reported significantly lower physical well-being than those with diabetes, but there was no significant difference post-transfer. Pre-transfer females reported lower scores than males on the Psychological Well-being and Autonomy and Parent Relation dimensions; however, these differences disappeared post-transfer. Higher maternal overprotection scores were associated with significantly lower scores on the Psychological Well-being, Autonomy and Parent Relation, and Social Support and Peers dimensions, regardless of transfer status. Conclusions Disease group, gender and maternal overprotection were predictors of health-related quality of life pre- and post-transfer from child to adult healthcare. Transition programmes should promote self-management and discourage parental overprotection. [ABSTRACT FROM AUTHOR]

Aims and objectives This paper aims to provide an updated comprehensive review of the research-based evidence related to the transitions of care process for adolescents and young adults with chronic illness/disabilities since 2010. Background Transitioning adolescent and young adults with chronic disease and/or disabilities to adult care services is a complex process, which requires coordination and continuity of health care. The quality of the transition process not only impacts on special health care needs of the patients, but also their psychosocial development. Inconsistent evidence was found regarding the process of transitioning adolescent and young adults. Design An integrative review was conducted using a five-stage process: problem identification, literature search, data evaluation, data analysis and presentation. Methods A search was carried out using the EBSCOhost, Embase, MEDLINE, Psyc INFO, and AustHealth, from 2010 to 31 October 2014. The key search terms were (adolescent or young adult) AND (chronic disease or long-term illness/conditions or disability) AND (transition to adult care or continuity of patient care or transfer or transition). Results A total of 5719 records were initially identified. After applying the inclusion criteria a final 61 studies were included. Six main categories derived from the data synthesis process are Timing of transition; Perceptions of the transition; Preparation for the transition; Patients' outcomes post-transition; Barriers to the transition; and Facilitating factors to the transition. A further 15 subcategories also surfaced. Conclusions In the last five years, there has been improvement in health outcomes of adolescent and young adults post-transition by applying a structured multidisciplinary transition programme, especially for patients with cystic fibrosis and diabetes. However, overall patients' outcomes after being transited to adult health care services, if recorded, have remained poor both physically and psychosocially. An accurate tracking mechanism needs to be established by stakeholders as a formal channel to monitor patients' outcomes post- transition. [ABSTRACT FROM AUTHOR]

Background Recent evidence suggests that fostering strategies to enable youth with chronic health conditions to work towards gradual self-management of their health is key in successful transition to adult healthcare. To date, there is limited research on self-management promotion for youth. The purpose of this study is to explore self-management from the perspectives of youth, parents and healthcare providers in transition to adult healthcare. Methods Part of a larger longitudinal transition (TRACE-2009-2013) study, interpretive phenomenology was used to explore the meaning of the lived experiences and perceptions of youth, parents, and healthcare providers about transition to adult healthcare. Purposeful sampling was utilized to select youth with a range of chronic health conditions from the TRACE cohort (spanning 20 diagnoses including developmental disabilities and chronic conditions), their parents and healthcare providers. Results The emerging three themes were: increasing independence of youth; parents as safety nets and healthcare providers as enablers and collaborators. The findings indicate that the experiences of transitioning youth, parents and service providers are interconnected and interdependent. Conclusions Results support a dynamic and developmentally appropriate approach when working with transitioning youth and parents in practice. As youth depend on parents and healthcare providers for support in taking charge of their own health, parents and healthcare providers must work together to enable youth for self-management. At a policy level, adequate funding, institutional support and accreditation incentives are recommended to allow for designated time for healthcare providers to foster self-management skills in transitioning youth and parents. [ABSTRACT FROM AUTHOR]

Background: Healthy Alberta Communities (HAC) was a 3-year community-based intervention to reduce lifestyle-related risk factors for chronic disease and obesity at a population-level. The current paper examines changes in blood pressure (BP) and anthropometric indicators within HAC communities compared to secular trends.Methods: Between 2006 and 2009, this community-academic partnership sought to create environments supportive of healthier dietary and physical activity behaviours within four diverse communities in Alberta, Canada. Height, weight, waist and hip circumference and BP were measured among 1554 and 1808 community residents at baseline (2006) and follow-up (2009), respectively. A comparison sample was drawn from a representative national survey. Samples were stratified by age and change between pre- and post-intervention was assessed using t-tests. Changes in parameters over time between groups were compared using meta-analysis. The net difference in change in outcomes (change in intervention communities minus change in comparison group) represented the effect of the intervention.Results: Adjusted systolic (SBP) and diastolic (DBP) BP declined within most age groups in HAC communities from pre- to post-intervention. The net decline in SBP was 1 mmHg in 20-39 year olds (p = 0.006) and 2 mmHg in 40-59 year olds (p = 0.001), while the net decline in DBP was 3 mmHg in 20-39 year olds (p < 0.001), 2 mmHg in 40-59 year olds (p < 0.001) and 3 mmHg in 60-79 year olds (p < 0.001). The net increase in the proportion of individuals with normal BP was 5.9 % (p < 0.001), while the net decline in the proportion of individuals with stage 1 hypertension was 4.5 % (p < 0.001). BMI and body weight were unchanged. There was a significant net increase in waist and hip circumference among 20-39 year olds within intervention communities.Conclusions: Findings suggest HAC succeeded in shifting the population distribution of BP in a leftward direction. By contrast, anthropometric parameters remained unchanged or worsened within intervention communities. Therefore, while improvements in some clinical risk factors can be achieved through relatively diffuse and shorter-term community-level environmental changes, improvements in others may require interventions of greater intensity and duration. Evaluating the success of community-based interventions based on their efficacy in changing individual-level clinical indicators may, however, underestimate their potential. [ABSTRACT FROM AUTHOR]

The article discusses two longitudinal studies which examined the extent to which different clusters of parental and peer support were related to the well- and ill-being of adolescents with chronic diseases over time. The results revealed that four clusters have emerged, that support from parents and peers proved critical towards psychological functioning, and that the typological approach is important for assessing social support for adolescents with chronic conditions.

Background: Suffering from a chronic disease or disability (CDD) during adolescence can be a burden for both the adolescents and their parents. The aim of the present study is to assess how living with a CDD during adolescence, the quality of parent-adolescent relationship (PAR) and the adolescent's psychosocial development interact with each other. Methods: Using the Swiss Multicenter Adolescent Survey on Health 2002 (SMASH02) database, we compared adolescents aged 16-20 years with a CDD (n = 760) with their healthy peers (n = 6493) on sociodemographics, adolescents' general and psychosocial health, interparental relationship and PAR. Results Bivariate analyses showed that adolescents with a CDD had a poorer psychosocial health and a more difficult relationship with their parents. The log-linear model indirectly linked CDD and poor PAR through four variables: two of the adolescents' psychosocial health variables (suicide attempt and sensation seeking), the need for help regarding difficulties with parents and a highly educated mother that acted as a protective factor, allowing for a better parent-adolescent with a CDD relationship. Conclusion: It is essential for health professionals taking care of adolescents with a CDD to distinguish between issues in relation with the CDD from other psychosocial difficulties, in order to help these adolescents and their parents deal with them appropriately and thus maintain a healthy PAR. [ABSTRACT FROM AUTHOR]

OBJECTIVE: Poor health in adolescence has the potential to disrupt education and employment pathways. This study is the first systematic review of the literature examining education and employment outcomes in adulthood of poor adolescent mental and physical health. METHODS: We conducted searches using a standardized search protocol in 8 electronic databases: PsycINFO, Medline, Embase, ERIC, British Education Index, Australian Education Index, Social Sciences Citation Index, and CINAHL Plus. We identified studies that longitudinally compared adult education and employment outcomes of those with an adolescent chronic condition of clinical severity with healthy controls. We conducted meta-analyses using odds ratios (for dichotomous variables) and Cohen's d (for continuous variables) as our main summary statistics. RESULTS: We identified 27 studies incorporating 70 relevant analyses. Our meta-analyses suggested that overall, poor health in adolescence was associated with poorer education and employment outcomes in adulthood. However, evidence was much stronger for mental health conditions than for physical health conditions, for which less evidence was available and mixed findings emerged. Compared with mental health conditions, we identified few studies investigating the long-term outcomes of physical health conditions. Age and follow-up times varied considerably across our studies, which potentially resulted in some heterogeneity in effect sizes. The majority of included studies were conducted in the United States, raising questions about the generalizability of the results internationally. CONCLUSIONS: Health in adolescence contributes to adult attainment and life chances. The results suggest that investment in health may improve life chances and that policy interventions may improve outcomes for those with adolescent chronic conditions. [ABSTRACT FROM AUTHOR]

PURPOSE: To determine patients' and parents' perceptions regarding the delivery of transition education and perceived barriers to transfer to adult oriented care. METHODS: A self-report survey was administered to a convenience sample of patients (16-25 years old) with various childhood onset chronic diseases. A similar survey was administered to their parents/guardians. RESULTS: A total of 155 patients and 104 parents participated in the study. The mean age of patients was 18.8 ± 2.3 years; 57% were female. Although most patients and parents reported receiving information and training about their medical condition, significant gaps in other aspects of transition education were identified. These included stated deficiencies in education regarding unprotected intercourse, health of future offspring, birth control, pregnancy, illicit drug use, and future career or vocation counseling. Commonly cited barriers to transfer were emotional attachments and lack of adult medicine specialty providers; however, the majority anticipated being ready to transfer to adult oriented care by age 25 years. CONCLUSION: There are significant gaps in the delivery of transition education as perceived by patients and their parents. Standardization of transition education may help ensure that patients acquire the knowledge and skills for health care self-management in adulthood and successful transfer to adult oriented care. [ABSTRACT FROM AUTHOR]

Accessible summary The findings from this study reveal a significantly higher prevalence of neurological and intellectual disabilities as well as epilepsy among adolescents residing in a social welfare/juvenile justice institution in Nigeria compared with a cohort of school going adolescents. Epilepsy and neurological deficits was particularly prevalent among adolescents admitted into the institution as victims of neglect compared with those brought in as offenders., Stigmatization of and social prejudices against children with neuro-psychiatric disabilities and epilepsy as well as lack of support for their caregivers in Nigeria was speculated as the key factor promoting neglect of such children. The speculation was based on the findings from this study and extant literature. Consequently, efforts should be geared towards disengaging childhood epilepsy and neuro-psychiatric disabilities from myth and prejudices and to provide needed support for caregivers of children with such conditions. Meanwhile curative and restorative neuro-psychiatric services should be part of the service package for children within social welfare/juvenile justice institutions in Nigeria., Abstract A total of 67 adolescents from a juvenile remand home were matched with 67 other adolescents by age and gender, with a view to determine the prevalence and spectrum of neurological and intellectual disabilities. Intelligence quotient ( IQ) was estimated using an adapted version of the Slosson's Intelligence Test and a full neurological evaluation was carried out. The mean IQ score for the remand home participants was significantly lower than the controls (77 ± 11 vs. 99 ± 14; t = 1.6, P = 0.001). Almost half (46.7%) of the participants in the remand home had intellectual disability of varying degrees, including borderline intellectual functioning, compared with only two (3.3%) of the comparison group ( P < 0.001). Epilepsy and neurological deficits were significantly more prevalent among the remand home group, particularly those admitted as victims of neglect, compared with the comparison group ( P ≤ 0.02). These findings and recent literature were used to speculate the possible underlying factors. Policy implications for child social welfare in Nigeria were suggested. [ABSTRACT FROM AUTHOR]

Aims and objectives. To: (1) Examine children's/young people's, parents' and professionals'/workers' perceptions of the effectiveness of different models of self-care support, (2) identify factors that support and inhibit self-care and (3) explore how different models integrate with self-care support provided by other organisations. Background. Childhood long-term illness has been largely overlooked in government policy and self-care support under-researched when compared with adults. There is a lack of evidence on which are the most appropriate models and methods to engage young people and their parents in self-care. Design. Case study. Methods. Case studies of six different models of self-care support were conducted using multiple methods of data collection in 2009. Semi-structured interviews were conducted with 26 young people, 31 parents and 36 self-care support providers. A sample of self-care support activities was observed and relevant documents reviewed. Data were analysed using the Framework approach. Results. The effectiveness of self-care support projects was defined in relation to four dimensions - providing a sense of community, promoting independence and confidence, developing knowledge and skills and engaging children/young people. Self-care support provided by schools appeared to be variable with some participants experiencing barriers to self-management and inclusion. Participants self-referred themselves to self-care support projects, and there was a lack of integration between some projects and other forms self-care support. Conclusion. This study adds to knowledge by identifying four dimensions that are perceived to be central to effective self-care support and the contextual factors that appear to influence access and experiences of self-care support. Relevance to clinical practice. Study findings can inform the development of self-care support programmes to meet the needs of individuals, families and communities. In addition, the findings suggest that healthcare professionals need to support schools if young people with long-term conditions are to have the same educational and social opportunities as their peers. [ABSTRACT FROM AUTHOR]