scholarly journals Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews (Preprint)

2018 ◽  
Author(s):  
Stuart W Grande ◽  
Meghan R Longacre ◽  
Karin Palmblad ◽  
Meera V Montan ◽  
Rikard P Berquist ◽  
...  
Keyword(s):  
Content Analysis ◽  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Treatment Strategies ◽  
Treatment Decisions ◽  
Pediatric Care ◽  
Adult Care ◽  
Personalized Care ◽  
Semistructured Interviews ◽  
Care Technology

BACKGROUND Young people living with juvenile idiopathic arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies. OBJECTIVE This study aims to examine how an mHealth patient support system (mPSS) might foster partnership between young people living with JIA, their families, and care teams. METHODS Semistructured interviews with young people (5-15 years old), their families, and JIA care teams were conducted using researcher-developed interviews guides. Transcribed data were qualitatively analyzed using conventional content analysis. RESULTS We conducted semistructured interviews with 15 young people, their parents, and 4 care team members. Content analysis revealed the potential of an mPSS to support productive dialogue between families and care teams. We identified four main themes: (1) young people with JIA face communication challenges, (2) normalizing illness through shared experience may improve adherence, (3) partnership opens windows into illness experiences, and (4) readiness to engage appears critical for clinic implementation. CONCLUSIONS A human-centered mPSS design that offers JIA patients the ability to track personally relevant illness concerns and needs can enhance communication, generate consensus-based treatment decisions, and improve efficiency and personalization of care. Technology that supports continuous learning and promotes better understanding of disease management may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes.

scholarly journals Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews

10.2196/10401 ◽  
2019 ◽  
Vol 7 (2) ◽  
pp. e10401 ◽  
Author(s):  
Stuart W Grande ◽  
Meghan R Longacre ◽  
Karin Palmblad ◽  
Meera V Montan ◽  
Rikard P Berquist ◽  
...  
Keyword(s):  
Content Analysis ◽  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Semistructured Interviews

Transferring Young People With Profound Intellectual and Multiple Disabilities From Pediatric to Adult Medical Care: Parents' Experiences and Recommendations

2013 ◽  
Vol 51 (3) ◽  
pp. 176-189 ◽  
Author(s):  
Karen G. C. B. Bindels-de Heus ◽  
AnneLoes van Staa ◽  
Ingeborg van Vliet ◽  
Frans V. P. M. Ewals ◽  
Sander R. Hilberink
Keyword(s):  
Young People ◽  
Medical Care ◽  
Transitional Care ◽  
Multiple Disabilities ◽  
Information Provision ◽  
Pediatric Care ◽  
Adult Care ◽  
Care Coordinator ◽  
Convenience Sample ◽  
Parents Experiences

Abstract Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16–26 years) completed a web-based questionnaire. Twenty-two percent of the young persons were still in pediatric care; 22% of the others had no care coordinator, although their health needs were the same. Parents valued the care provided by the pediatrician, and wished to see it continued. They were critical about how they had been prepared for transfer to adult care. Parents provided suggestions to improve transitional care, such as early start, information provision, and a joint consultation between pediatric and adult care.

An Overview of Digital Health in the Transition of Pediatric to Adult Epilepsy Care

2020 ◽  
Vol 09 (04) ◽  
pp. 106-113
Author(s):  
Ysabeau Bernard-Willis ◽  
Emily De Oliveira ◽  
Shaheen E Lakhan
Keyword(s):  
Health Management ◽  
Digital Health ◽  
Health Care Systems ◽  
Well Being ◽  
Pediatric Care ◽  
Medical Mistrust ◽  
Patient Portals ◽  
Language Therapy ◽  
Adult Care ◽  
Care Systems

AbstractChildren with epilepsy often have impairments in cognitive and behavioral functioning which may hinder socio-occupational well-being as they reach adulthood. Adolescents with epilepsy have the added worry of health problems while starting the transition from family-centered pediatric care into largely autonomous adult care. If this transition is not appropriately planned and resourced, it may result in medical mistrust, nonadherence, and worsening biopsychosocial health as an adult. In recent years, there has been increased availability of digital health solutions that may be used during this stark change in care and treating teams. The digital health landscape includes a wide variety of technologies meant to address challenges faced by patients, caregivers, medical professionals, and health care systems. These technologies include mobile health products and wearable devices (e.g., seizure monitors and trackers, smartphone passive data collection), digital therapeutics (e.g., cognitive/behavioral health management; digital speech–language therapy), telehealth services (e.g., teleneurology visits), and health information technology (e.g., electronic medical records with patient portals). Such digital health solutions may empower patients in their journey toward optimal brain health during the vulnerable period of pediatric to adult care transition. Further research is needed to validate and measure their impact on clinical outcomes, health economics, and quality of life.

Sexual and Gender Minority Mental Health among Children and Youth

2020 ◽  
pp. 228-243
Author(s):  
Jessica N. Fish ◽  
Laura Baams ◽  
Jenifer K. McGuire
Keyword(s):  
Mental Health ◽  
Young People ◽  
Mental Health Treatment ◽  
Treatment Strategies ◽  
Youth Mental Health ◽  
Children And Youth ◽  
Gender Minority ◽  
The World ◽  
Sexual And Gender Minority ◽  
And Gender

Sexual and gender minority (SGM) young people are coming of age at a time of dynamic social and political changes with regard to LGBTQ rights and visibility around the world. And yet, contemporary cohorts of SGM youth continue to evidence the same degree of compromised mental health demonstrated by SGM youth of past decades. The authors review the current research on SGM youth mental health, with careful attention to the developmental and contextual characteristics that complicate, support, and thwart mental health for SGM young people. Given a large and rapidly growing body of science in this area, the authors strategically review research that reflects the prevalence of these issues in countries around the world but also concentrate on how mental health concerns among SGM children and youth are shaped by experiences with schools, families, and communities. Promising mental health treatment strategies for this population are reviewed. The chapter ends with a focus on understudied areas in the SGM youth mental health literature, which may offer promising solutions to combat SGM population health disparities and promote mental health among SGM young people during adolescence and as they age across the life course.

Contextual Behavioral Approaches to Understanding Body Image Threats and Coping in Youth: A Qualitative Study

2021 ◽  
pp. 074355842110078
Author(s):  
Anna L. Brichacek ◽  
Kristen Murray ◽  
James T. Neill ◽  
Elizabeth Rieger
Keyword(s):  
Body Image ◽  
Young People ◽  
Developmental Changes ◽  
Educational Institutions ◽  
Life Domains ◽  
Negative Experiences ◽  
Semistructured Interviews ◽  
External Sources ◽  
And Coping ◽  
Selection Of

Adolescence involves significant developmental changes and challenges including heightened body image concerns. However, there is limited research on adaptive ways of responding to perceived threats to body image. This study uses body image flexibility, derived from contextual behavioral perspectives, and coping theories to explore young people’s responses to body image threats. High school and university students (12 male, 15 female) aged 12 to 24 years were recruited from educational institutions in a metropolitan area of Australia. Thematic analysis of semistructured interviews identified themes related to body image threats from internal and external sources. In response to these threats, young people reported coping by changing the content of, and how they related to, perceived threats, and seeking social support. In addition, young people viewed coping as a dynamic process that changed over time and across situations. Reported processes of attending to, and allowing, momentary negative experiences and connecting with other important life domains were consistent with body image flexibility. The coping context affected the selection of coping strategies, with body image flexibility facilitating more adaptive coping for some participants. Further investigation of contextual behavioral approaches, such as body image flexibility, could help to better understand and promote adaptive body image coping in youth.

scholarly journals P121 The efficacy of treatment interventions on fatigue in adolescents with juvenile idiopathic arthritis: a literature review

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Sebastian Moshtael ◽  
Sonia Khanom ◽  
Janet E McDonagh
Keyword(s):  
Quality Of Life ◽  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Rating Scale ◽  
Outcome Measure ◽  
Therapeutic Interventions ◽  
Current Evidence ◽  
Original Research ◽  
Qualitative Synthesis

Abstract Background/Aims  Fatigue has been reported by young people and professionals alike as a major challenge for people living with juvenile idiopathic arthritis (JIA) . It remains unclear as to how therapeutic interventions impacts on this major symptom. The aim of this review was to determine the current evidence for the effectiveness of therapeutic interventions, non- pharmacological and pharmacological, on improving fatigue in adolescents with JIA. Methods  Three electronic databases (MEDLINE, EMBASE, PsycINFO) were searched from 2000 to Feb 2020; in addition to manual searches. Articles were eligible for inclusion if they (i) were original research papers, (ii) had fatigue as a primary outcome measure (iii) included adolescents (10-25 years) and (iv) were available in the English language. Results  Of the 3,142 records identified, 31 underwent full text assessment and 4 studies were included in the qualitative synthesis including 2 from the Netherlands, 1 Germany, and 1 from Canada. The total number of participants across the 4 studies was 824. Three were randomised controlled trials of nonpharmacological interventions and one was a cohort study from a national drug registry including older adolescents JIA (mean: 19-years). Measurement tools included the Paediatric Quality of life multidimensional fatigue scale, (2 studies), the Checklist for Individual Strength CIS-20 (1 study), a numeric rating scale (1 study). In one study a visual analogue scale for energy level was also utilised. In 2 studies baseline prevalence of fatigue was reported as 60% and 76% respectively. Significant reduction in fatigue was observed in all three nonpharmacological studies. In the registry study, fatigue was noted to be prevalent in spite of the disease being in inactive or minimally active on biologic therapy. In 3 studies the relationship between health-related quality of life and fatigue was highlighted and showed a decreased quality of life in fatigued young people. Conclusion  Fatigue is a significant problem in JIA during adolescence and influences quality of life. Improvements in fatigue with non-pharmacological interventions have been reported. However, at present, data is insufficient to conclusively decide which treatment intervention is most efficacious in treating fatigue in young people with JIA. Fatigue should be considered as an important outcome measure for the management of JIA in future evaluations of interventions. Disclosure  S. Moshtael: None. S. Khanom: None. J.E. McDonagh: None.

A Scoping Review and Content Analysis of Common Depressive Symptoms of Young People

2021 ◽  
pp. 105984052110126
Author(s):  
Jia-Wen Guo ◽  
Brooks R. Keeshin ◽  
Mike Conway ◽  
Wendy W. Chapman ◽  
Katherine A. Sward
Keyword(s):  
Content Analysis ◽  
Depressive Symptoms ◽  
Young People ◽  
Health Care Providers ◽  
Scoping Review ◽  
School Nurses ◽  
Future Research ◽  
Depression Symptom ◽  
Care Providers ◽  
Five Dimensions

School nurses are the most accessible health care providers for many young people including adolescents and young adults. Early identification of depression results in improved outcomes, but little information is available comprehensively describing depressive symptoms specific to this population. The aim of this study was to develop a taxonomy of depressive symptoms that were manifested and described by young people based on a scoping review and content analysis. Twenty-five journal articles that included narrative descriptions of depressive symptoms in young people were included. A total of 60 depressive symptoms were identified and categorized into five dimensions: behavioral ( n = 8), cognitive ( n = 14), emotional ( n = 15), interpersonal ( n = 13), and somatic ( n = 10). This comprehensive depression symptom taxonomy can help school nurses to identify young people who may experience depression and will support future research to better screen for depression.

Clinical, behavioural and social indicators for poor glycaemic control around the time of transfer to adult care: a longitudinal study of 126 young people with diabetes

2017 ◽  
Vol 34 (5) ◽  
pp. 667-675 ◽  
Author(s):  
P. Castensøe-Seidenfaden ◽  
A. K. Jensen ◽  
H. Smedegaard ◽  
E. Hommel ◽  
G. R. Husted ◽  
...  
Keyword(s):  
Longitudinal Study ◽  
Glycaemic Control ◽  
Young People ◽  
Social Indicators ◽  
Adult Care ◽  
Poor Glycaemic Control

scholarly journals Holding the Child (and Practitioner) in Mind? Youth Justice Practitioners’ Experiences Supervising Young People Displaying Sexually Harmful Behavior

2017 ◽  
Vol 35 (9-10) ◽  
pp. 2055-2081 ◽  
Author(s):  
Andrew Myles-Wright ◽  
Claire Nee
Keyword(s):  
Young People ◽  
Justice System ◽  
Youth Justice ◽  
Vulnerable Group ◽  
The United Kingdom ◽  
Relationship Problem ◽  
Semistructured Interviews ◽  
Critical Issues ◽  
Harmful Behavior ◽  
Future Practice

This qualitative study explored the lived experiences of youth justice practitioners supervising young people (below 18 years old) displaying sexually harmful behavior within the Youth Justice System (YJS) in the United Kingdom, as little is currently known about the challenges faced when working with this vulnerable group. Five practitioners from two Youth Offending Services (YOS) participated in individual semistructured interviews, which were subjected to thematic analysis while also analyzing the performative function of language used. The analysis identified an overarching theme of “systemic unease,” which contained two subthemes surrounding “unease with the self, and wider YOS personnel” and “unease working with partner agencies.” The findings illuminate critical issues regarding future practice with this underresearched group of young people within the broader context of youth justice, which require further exploration and investigation. The “dual relationship problem” involving tension between risk management and therapeutic alliance is explored in relation to this group. The moral acquaintance model and the model of dynamic adaptation are suggested as helpful approaches to support practitioners and multi-agency professionals going forward in this area.

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