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

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.

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.

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.

scholarly journals “Asking Too Much?”: Randomized N-of-1 Trial Exploring Patient Preferences and Measurement Reactivity to Frequent Use of Remote Multidimensional Pain Assessments in Children and Young People With Juvenile Idiopathic Arthritis (Preprint)

2019 ◽  
Author(s):  
Rebecca Rachael Lee ◽  
Stephanie Shoop-Worrall ◽  
Amir Rashid ◽  
Wendy Thomson ◽  
Lis Cordingley
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Patient Preferences ◽  
Pain Interference ◽  
Time Sampling ◽  
Sampling Strategies ◽  
Children And Young People ◽  
Measurement Reactivity ◽  
Pain Reporting ◽  
Frequent Assessment

BACKGROUND Remote monitoring of pain using multidimensional mobile health (mHealth) assessment tools is increasingly being adopted in research and care. This assessment method is valuable because it is challenging to capture pain histories, particularly in children and young people in diseases where pain patterns can be complex, such as juvenile idiopathic arthritis (JIA). With the growth of mHealth measures and more frequent assessment, it is important to explore patient preferences for the timing and frequency of administration of such tools and consider whether certain administrative patterns can directly impact on children’s pain experiences. OBJECTIVE This study aimed to explore the feasibility and influence (in terms of objective and subjective measurement reactivity) of several time sampling strategies in remote multidimensional pain reporting. METHODS An N-of-1 trial was conducted in a subset of children and young people with JIA and their parents recruited to a UK cohort study. Children were allocated to 1 of 4 groups. Each group followed a different schedule of completion of MPT for 8 consecutive weeks. Each schedule included 2 blocks, each comprising 4 different randomized time sampling strategies, with each strategy occurring once within each 4-week block. Children completed MPT according to time sampling strategies: once-a-day, twice-a-day, once-a-week, and as-and-when pain was experienced. Adherence to each strategy was calculated. Participants completed the Patient-Reported Outcomes Measurement Information System Pain Interference Scale at the end of each week to explore objective reactivity. Differences in pain interference scores between time sampling strategies were assessed graphically and using Friedman tests. Children and young people and their parents took part in a semistructured interview about their preferences for different time sampling strategies and to explore subjective reactivity. RESULTS A total of 14 children and young people (aged 7-16 years) and their parents participated. Adherence to pain reporting was higher in less intense time sampling strategies (once-a-week=63% [15/24]) compared with more intense time sampling strategies (twice-a-day=37.8% [127/336]). There were no statistically significant differences in pain interference scores between sampling strategies. Qualitative findings from interviews suggested that children preferred once-a-day (6/14, 43%) and as-and-when pain reporting (6/14, 43%). Creating routine was one of the most important factors for successful reporting, while still ensuring that comprehensive information about recent pain was captured. CONCLUSIONS Once-a-day pain reporting provides rich contextual information. Although patients were less adherent to this preferred sampling strategy, once-a-day reporting still provides more frequent assessment opportunities compared with other less intense or overburdensome schedules. Important issues for the design of studies and care incorporating momentary assessment techniques were identified. We demonstrate that patient reporting preferences are key to accommodate and are important where data capture quality is key. Our findings support frequent administration of such tools, using daily reporting methods where possible.

scholarly journals Sacked! An investigation of young workers' dismissal

2011 ◽  
Vol 17 (2) ◽  
pp. 226-244 ◽  
Author(s):  
Ashlea Kellner ◽  
Paula McDonald ◽  
Jennifer Waterhouse
Keyword(s):  
Content Analysis ◽  
Young People ◽  
Sexual Harassment ◽  
Young Women ◽  
Relative Frequency ◽  
Employment Relationship ◽  
Young Workers ◽  
Employment Relationships ◽  
The Relationship ◽  
Advocacy Organisation

AbstractLimited academic attention has been afforded to young workers relative to their adult counterparts. This study addresses a phase of the employment relationship for young people that is very infrequently examined – during or around the time when the relationship ends. It examines the relative frequency of different forms of dismissal and the circumstances preceding the dismissals via a content analysis of 1259 cases of employee enquiries to a community advocacy organisation in Australia. Results indicate that dismissal was most commonly associated with bullying, harassment, and taking personal leave. Young men, compared to young women, were disproportionately likely to report allegations of misconduct as preceding dismissal, while females experienced higher rates of sexual harassment and discrimination. The research highlights the types and circumstances of dismissal across a range of employment contexts and reveals the complexities of youth employment relationships which may differ from those of the general workforce.

scholarly journals Why do Young People Give up Their Job Search?

2018 ◽  
Vol 8 (3) ◽  
Author(s):  
Sami Ylistö
Keyword(s):  
Content Analysis ◽  
Young People ◽  
Labour Market ◽  
Job Search ◽  
Individual Choice ◽  
Search Behaviour ◽  
Job Seeking ◽  
Labour Market Position ◽  
Unemployed Youth

The decision to search or not to search for work is usually considered a purely individual choice. However, this is a simplistic view, which ignores important structural and situational aspects of job search behaviour. This article discusses the reasons why long-term unemployed youth in Finland give up their search for work or a student place. The data comprise 28 life course interviews that were analysed by means of content analysis. The data show that young people’s job seeking behaviour is greatly influenced by how they view their labour market position and prospects. Job search abandonment is often temporary and young people soon resume their search because of the expectations of the society around them and their willingness to find work. The young people interviewed provided rational, emotional and life value reasons for their decision to suspend their job search. The article offers a deeper understanding of youths’ job search behaviour.

scholarly journals Patterns and Trends in Contemporary Canadian Verse-Novels for Young People

2017 ◽  
Vol 19 (4) ◽  
pp. 23
Author(s):  
Beverley A. Brenna ◽  
Yina Liu ◽  
Shuwen Sun
Keyword(s):  
Content Analysis ◽  
Children's Literature ◽  
Young People ◽  
Qualitative Content Analysis ◽  
Children’S Literature ◽  
Radical Change ◽  
Specific Work ◽  
Reluctant Readers ◽  
Verse Novel

This qualitative content analysis identified patterns and trends in a contemporary set of Canadian verse-novels for young people. Twenty-two books were located in our search for titles published between 1995 and 2016, and many of these emerged as award-winners in various contexts including the Governor General’s Award for children’s literature (text). Dresang’s notion of Radical Change, adapted for this interrogation, illuminated particular elements of these societal artifacts worthy of notice. While studies have occurred regarding textual forms or formats and reader characteristics, specific work with the verse-novel and its use with struggling and reluctant readers is limited, with professional articles appearing in place of research-oriented discussions. Scrutiny of available verse-novels is important as it opens a door for explorations of these resources with participants in classroom settings.  

O002. Factors facilitating the self- and shared-management of Juvenile Idiopathic Arthritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_5) ◽  
Author(s):  
Simon Stones
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Paediatric Rheumatology ◽  
The Self ◽  
Self Management ◽  
Management Support ◽  
Children And Young People ◽  
Realist Approach ◽  
Shared Management ◽  
Initial Question

Abstract Background Juvenile idiopathic arthritis (JIA) requires some form of lifelong management, with at least one third of children symptomatic in adulthood. Therefore, empowering children to competently self-manage their health and wellbeing across the lifecourse is logical, while supporting families in their shared-management role during childhood. However, there was a limited theoretical basis to the self- and shared-management of JIA across the lifecourse. The objective is to explore the factors facilitating the self- and shared-management of JIA using a realist approach to evaluation. Methods Guided by the Individual and Family Self-management Theory, a three-stage realist approach to evaluation was undertaken: 1) initial JIA self- and shared-management question theories were elicited from literature reviews and stakeholder insights [1]; 2) seven initial question theories were tested using teacher-learner cycle interviews with 20 participants; 3) findings were analysed using a theory-driven approach to thematic analysis, using deductive, inductive, and retroductive reasoning to extend or refute the initial question theories, in order to identify demi-regularities in the data. Results Six refined JIA self- and shared-management question theories emerged: 1) meaningful and bespoke self-management support across the life course for children and young people with JIA; 2) recognised and valued shared-management support for the families of children and young people with JIA, with autonomy in mind; 3) individual healthcare plans as a shared management communication tool to facilitate optimal management of JIA; 4) consistent recognition, value, and encourage of self- and shared-management support from the paediatric rheumatology multi-disciplinary team and associated professionals; 5) child, young-person, and family-focused paediatric rheumatology care and support services across the lifecourse; and 6) bespoke and inclusive approaches by education providers to enable children and young people with JIA to feel safe, supported, and able to fulfil their potential. Conclusion There is an increasing recognition of the importance of self- and shared-management of JIA and other paediatric-onset chronic conditions. However, there is a lack of an overall, cohesive approach to self- and shared-management between healthcare providers, education providers, and patient/parent organisations. The findings from this study illuminate the factors facilitating JIA self- and shared-management at individual, interpersonal, institutional and infrastructural levels, bearing relevance to individuals and organisations involved in caring for, and supporting children with JIA and their families.

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