Young people with long-term health challenges experiences in transition to adulthood: A qualitative metasynthesis

Author's accepted manuscriptThis is the peer reviewed version of the following article: Rasalingam, A., Fegran, L., Brekke, I. & Helseth, S. (2021). Young people with long-term health challenges experiences in transition to adulthood: A qualitative metasynthesis. Journal of Advanced Nursing, 77(2), 595-607 which has been published in final form at https://doi.org/10.1111/jan.14641. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions. This article may not be enhanced, enriched or otherwise transformed into a derivative work, without express permission from Wiley or by statutory rights under applicable legislation. Copyright notices must not be removed, obscured or modified. The article must be linked to Wiley’s version of record on Wiley Online Library and any embedding, framing or otherwise making available the article or pages thereof by third parties from platforms, services and websites other than Wiley Online Library must be prohibited.Aims: The aim of this study was to describe the experiences of the transition to adult-hood for young people with long-term health challenges.Design: The metasynthesis approach was based on the guidelines by Sandelowski and Barroso for synthesizing qualitative research.Data sources: Seven electronic databases: CINAHL, Medline, Embase, PsycINFO, Web of Science, Scopus, and SocIndex were searched on 6–10 February 2020.Review methods: Studies were critically appraised using the Joanna Briggs criti-cal appraisal tool. Qualitative data were extracted, meta-summarised, then meta-synthesized.Findings: Nineteen qualitative studies were included in this review. Six themes il-lustrated experiences in the transition to adulthood: wishing for an ‘ordinary’ life, significance of close network, working towards independence, in need of systemic resources and services, psychosocial challenges and keeping a positive attitude.Conclusion: Young people with long-term health challenges wished for as ‘ordinary’ a life as possible in the future. In the transition to adulthood, they gradually gained more competence in self-management skills and knowledge and strived to become more independent. By having a positive attitude and using other coping strategies, young people can work on some of the difficulties they experience in this phase. However, to achieve and maintain independence young people with long-term health challenges are dependent on the support of a close network and systemic support and services.Impact: The findings highlight the need to help alleviate the fears and worries of young people with long-term health challenges and create opportunities for success-ful transition to adulthood by increased awareness and interventions from policy-makers and professionals in the health and social systemacceptedVersio

Development and Usability Testing of an Internet Intervention to Increase Physical Activity in Overweight Adolescents

Background: Internet interventions may provide opportunities for low threshold counseling using feedback to guide and support health behavior, including increased physical activity. Research shows that overweight and obese adolescents are less physically active than their peers of normal weight. There are good reasons to believe that Internet-based interventions may be particularly suitable for motivating adolescents to increase physical activity, but we need to gain further knowledge of what features are effective and how to design such interventions. Objective: To describe the process of development and evaluation of usability of a Web-based program for increasing physical activity in overweight adolescents. Methods: Informed by the self-determination theory, motivational interviewing, and perspectives on self-regulation, this intervention was developed in a stepwise process by an interdisciplinary team of researchers, designers, developers, and representatives from the target group. An iterative qualitative usability testing approach (observation, survey, and interview) was applied in 2 sequences, first in the lab and second in the field, to assess how adolescents (aged 12-16 years) used and experienced the program and to make adjustments to the program based on evaluation of their response. Results: The following components were included in the program: self-monitoring through planning and registration of physical activity and graphical response on progress, autonomy supportive individual Web-based counseling, forum for social support, and relevant age-adjusted information about physical activity. The first usability test resulted in adjustments related mainly to making the content and aim of the different features more visible and explicit. The second test evaluated the program with adjustments from the first test, revealing that the program was well accepted by the participants and only small aesthetic adjustments had to be made to complete the final version of the Internet program, Young & Active. Conclusions: Thorough preparation, with clear theory foundation and close monitoring in the developmental phase, as well as contribution and iterative evaluation from the target group, is essential to create a user-friendly and engaging program. The efficacy of the program will be evaluated in a controlled trial

Sleep and its relationship to health in parents of preterm infants: a scoping review

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The Outcomes of a 12-Week Internet Intervention Aimed at Improving Fitness and Health-Related Quality of Life in Overweight Adolescents: The Young & Active Controlled Trial

Background: Overweight and obesity among adolescents may have consequences, with potentially lasting effects on health and health-related quality of life (HRQoL). Excess weight is also associated with decreases in physical activity and cardiorespiratory fitness. The aim of the current study was to investigate the short-term effects of a 12-week Internet intervention in a primary care setting intended to increase cardiorespiratory fitness and HRQoL among overweight and obese adolescents. Methods: In this controlled trial, participants (13–15 years) were non-randomly allocated to an intervention- or a control group. The intervention group received 12- weeks access to an online program providing tailored physical activity counseling based on principles from Self-determination Theory and Motivational Interviewing. The control group received standard follow-up by the school nurses. The primary outcome measure of cardiorespiratory fitness was determined using a shuttle run test. The secondary outcomes: HRQoL, leisure time exercise, body image and self- determined motivation for physical activity and exercise, were assessed by self- report measures. Age- and gender-adjusted body mass index (BMI) was calculated based on measurements of height and weight. To compare pre-to post intervention differences within groups, a paired samples t-test was used while crude differences between groups were analyzed with an independent samples t-test. Results: Of the 120 participants, 108 completed the study, 75 in the intervention group and 33 in the control group. Exposure to the intervention had a small effect on cardiorespiratory fitness (0.14; 95% CI [0.01;0.28]; P 5 0.04), and a moderate effect on HRQoL (5.22; 95% CI [0.90; 9.53]; P 5 0.02). Moreover, the control group increased significantly in BMI, yielding a moderate preventive effect on BMI ( 2 0.39; 95% CI [ 2 0.74; 2 0.03]; P 5 0.03) for the intervention group. Conclusion: The results suggest that the Internet intervention with tailored physical activity counseling can have beneficial short-term effect on cardiorespiratory fitness, HRQoL and BMI among adolescents with overweight and obesity

Use of KIDSCREEN health-related quality of life instruments in the general population of children and adolescents - A scoping review

Purpose Subjectively assessing health related quality of life (HRQoL) in children and adolescents is increasingly important in the public health field. One valid and widely used generic HRQoL instrument is the KIDSCREEN questionnaire. The aim of this study was to map all studies using KIDSCREEN instruments in the general population of children and adolescents aged 6–18 years. Methods A scoping review was conducted. The search strategy was formulated according to the Preferred Reporting Items for Systematic Reviews and Scoping Reviews guidelines. The databases Cinahl, socINDEX, Medline, Embase, APA Psychinfo, Scopus, and Eric were searched in October 2021. Results In total, 1365 papers were eligible for screening, 1031 were excluded and 334 reports were read in full. 252 reports were included. KIDSCREEN studies in the general population was predominantly conducted in Europe (n = 211). Most studies (n = 179) had a cross sectional design, while few experimental studies (n = 24) were found. The three KIDSCREEN versions comprising of 10, 27 and 52 items, were equally distributed between studies. The self-reported version (n = 225) of the KIDSCREEN instrument was more prevalent than the proxy version, while few studies discussed a cut point. Study contexts reflected international trends of public health challenges, commonly including mental- and psychosocial health, physical activity, socioeconomic status, and obesity. Conclusion KIDSCREEN is widely used in cross sectional studies assessing common public health challenges. Experimental and longitudinal assessments, possibly including relevant cut offs remain mainly unexplored and are recommended for future research.publishedVersio

Sleep patterns and psychosocial health of parents of preterm and full-born infants: a prospective, comparative, longitudinal feasibility study

Background: The early birth and hospitalization of a preterm infant in neonatal intensive care unit can produce several emotional and behavioural responses including sleep problems for parents. Few studies have explored sleep and its associations with health and HRQoL over time in this vulnerable parent population. This purpose of this study was to evaluate the feasibility of a prospective, comparative, longitudinal study of the sleep patterns and psychosocial health of preterm and full-born infants’ parents during the first postpartum year. Methods: A prospective, comparative, longitudinal feasibility study was conducted. Parents of preterm infants were compared to parents of full-born infants to identify if there were differences in outcomes between the groups. The parents were instructed to wear actigraphs and complete sleep diaries for two consecutive weeks, and responded to a digital questionnaire covering stress, insomnia, fatigue, depression, social support, self-efficacy, and health-related quality of life. Survey data were collected at infant ages of 2, 6, and 12 months, actigraphy and sleep diary data were collected at infant age of 2 months only. Descriptive analysis was used to describe recruitment and attrition rates. Differences between completers and dropouts were analysed with a chi-square test (categorical data) and Mann–Whitney–Wilcoxon test for two independent samples (continuous variables). Results: Between June 2019 and March 2020, 25 parents of a preterm infant and 78 parents of a full-born infant were recruited from four neonatal intensive care units and two maternity wards, respectively, in four Norwegian hospitals. Feasibility was predefined as recruiting ≥ 75 parents each of preterm and full-born infants. The target for the full-born group was reached. However, the preterm group recruitment was challenging. Actigraphs, sleep diaries, and questionnaires were evaluated as feasible for use in a future study. Attrition rates were high in both groups at 6 and 12 months. No parent-related characteristics were associated with participation at 6 months. At 12 months, dropouts had a statistically significantly lower age in the full-born group (both parents) and higher age and body mass index in the preterm group (fathers). Conclusions: A longitudinal study is feasible; however, procedural changes, including using active methods and contacting participants, are necessary to increase the recruitment of preterm infants’ parents.publishedVersio

Sleep patterns and psychosocial health of parents of preterm and full-born infants : a prospective, comparative, longitudinal feasibility study

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App-based intervention among adolescents with persistent pain: a pilot feasibility randomized controlled trial

Background: Persistent pain in adolescence adversely afects everyday life and is an important public health problem. The primary aim was to determine the feasibility of an 8-week app-based self-management intervention to reduce pain and improve health-related quality of life in a community-based population of adolescents with persistent pain. A secondary aim was to explore diferences in health outcomes between the intervention and control groups. Methods: A sample of 73 adolescents aged 16–19 years with persistent pain from a community-based population were randomized into 2 groups. The intervention group received the Norwegian culturally adapted version of the iCanCope with PainTM app, which includes symptom tracking, goal setting, self-management strategies, and social support. The attention control group received a symptom tracking app. Feasibility was assessed as attrition rates and level of engagement (interactions with the app). The secondary outcomes included pain intensity, health-related quality of life, self-efcacy, pain self-efcacy, perceived social support from friends, anxiety and depression, and patient global impression. Statistical analyses were conducted using SPSS. Results: Demographic and baseline outcome variables did not difer between the 2 groups. No diferences were found between the participants completing the study and those who withdrew. Twenty-eight adolescents completed the intervention as planned (62% attrition). Both groups had a low level of app engagement. Intention-to-treat analysis (n = 19 + 14) showed no signifcant diferences in outcomes between groups. However, the large efect size (Cohen’s d = .9) for depression suggested a lower depression score in the intervention group. Conclusions: High treatment attrition and low engagement indicate the need for changes in trial design in a fullscale randomized controlled trial to improve participant retention.publishedVersio

Health-related quality of life, health literacy and COVID-19-related worries of 16- to 17-year-old adolescents and parents one year into the pandemic: a cross-sectional study

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Pain and pressure pain thresholds in adolescents with chronic fatigue syndrome and healthy controls: a cross-sectional study

Objectives: Although pain is a significant symptom in chronic fatigue syndrome (CFS), pain is poorly understood in adolescents with CFS. The aim of this study was to explore pain distribution and prevalence, pain intensity and its functional interference in everyday life, as well as pressure pain thresholds (PPT) in adolescents with CFS and compare this with a control group of healthy adolescents (HC). Methods: This is a case–control, cross-sectional study on pain including 120 adolescents with CFS and 39 HCs, aged 12–18 years. We measured pain frequency, pain severity and pain interference using self-reporting questionnaires. PPT was measured using pressure algometry. Data were collected from March 2010 until October 2012 as part of the Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial. Results: Adolescents with CFS had significantly lower PPTs compared with HCs (p<0.001). The Pain Severity Score and the Pain Interference Score were significantly higher in adolescents with CFS compared with HCs (p<0.001). Almost all adolescents with CFS experienced headache, abdominal pain and/or pain in muscles and joints. Moreover, in all sites, the pain intensity levels were significantly higher than in HCs (p<0.001). Conclusions: We found a higher prevalence of severe pain among adolescents with CFS and lowered pain thresholds compared with HCs. The mechanisms, however, are still obscure. Large longitudinal population surveys are warranted measuring pain thresholds prior to the onset of CFS