'Struggling to participate in everyday life': emerging adults' experiences of living with long-term health challenges.

AIM: To gain a deeper understanding of the experiences of participation in the everyday life of emerging adults living with long-term health challenges and how this influences their own quality of life. METHODS: Using an explorative study design, data were collected through in-depth interviews with a sample of 12 young people aged 18-29 years living with long-term health challenges in Norway. FINDINGS: The analysis identified one overarching theme of struggling to participate in everyday life, and four subthemes: the notion of being independent but also dependent, experiencing mismatch between needs and support, experiencing deprivation of spontaneity and feeling uncertain about the future. The emerging adults experienced difficulties with participation in key areas of life such as education, employment and leisure activities. Associated symptoms of their diagnosis, limited physical abilities and lack of sufficient support made it hard to participate in everyday life the way they aspired to. CONCLUSION: The challenges of living with a long-term health challenge as an emerging adult contributed to limitations in participation in different areas of life that was perceived as important for their quality of life.

Unpacking the Public Health Triad of Social Inequality in Health, Health Literacy, and Quality of Life-A Scoping Review of Research Characteristics.

Social inequalities in health, health literacy, and quality of life serve as distinct public health indicators, but it remains unclear how and to what extent they are applied and combined in the literature. Thus, the characteristics of the research have yet to be established, and we aim to identify and describe the characteristics of research that intersects social inequality in health, health literacy, and quality of life. We conducted a scoping review with systematic searches in ten databases. Studies applying any design in any population were eligible if social inequality in health, health literacy, and quality of life were combined. Citations were independently screened using Covidence. The search yielded 4111 citations, with 73 eligible reports. The reviewed research was mostly quantitative and aimed at patient populations in a community setting, with a scarcity of reports specifically defining and assessing social inequality in health, health literacy, and quality of life, and with only 2/73 citations providing a definition for all three. The published research combining social inequality in health, health literacy, and quality of life is heterogeneous regarding research designs, populations, contexts, and geography, where social inequality appears as a contextualizing variable.

Impact of growing up with somatic long-term health challenges on school completion, NEET status and disability pension: a population-based longitudinal study.

BACKGROUND: Young adulthood is an important transitional life phase that can determine a person's educational and employment trajectories. The aim of this study was to examine the impact of somatic long-term health challenges in adolescence on upper secondary school completion, not in education, employment or training (NEET status) and receiving disability pension in early adulthood. Additional disparities in educational and employment achievements were also investigated in relation to socioeconomic background. METHODS: The sample consisted of all young adults born in the period 1990 to 1996, (N = 421,110). Data were obtained from the Norwegian Patient Registry which is linked to the Central Population Register, education and income registries and the Historical Event Database in Statistics Norway. These data sources provide longitudinal population data. Statistical analyses were performed using multiple logistic regression and computed average marginal effects after the multiple logistic regression. RESULTS: The results showed that, compared to young adults without long-term health challenges, young adults with the diagnoses inflammatory bowel disease, epilepsy, diabetes, sensory impairment, spinal muscular atrophy (SMA), spina bifida (SB) and cerebral palsy (CP) had lower odds of completing upper secondary education. Moreover, young adults with long-term health challenges had higher odds of NEET status by age 21 compared to those without a long-term health challenge. As for the odds of NEET status by age 21, the results showed that young adults with epilepsy, SMA, SB and CP in particular had the highest odds of receiving disability pension compared to young adults without long-term health challenges. CONCLUSIONS: This longitudinal study revealed that on average young adults with long-term health challenges, compared to those without, struggle to participate in education and employment. The findings highlight the need for preventive measures especially in relation to young adults with neurological conditions such as epilepsy, SMA, SB, and CP.

Students' top 10 priorities of research uncertainties on students' sleep: a pragmatic James Lind Alliance approach.

OBJECTIVES: Inspired by the James Lind Alliance (JLA) user involvement approach, the aim of the present study was to identify the top 10 uncertainties for sleep research raised by students in higher education, and to discuss our experiences with adapting the JLA method to a student population. DESIGN: The study design is a pragmatic JLA approach, including a priority setting partnership within the field of sleep, collection of sleep-related research uncertainties as reported by students in higher education, sorting of the uncertainties and a final identification of the top 10 uncertainties through collaborative work between researchers, students, stakeholders and experts in the field. Uncertainties were collected using a one-question online survey: 'as a student, which question(s) do you consider to be important with regards to sleep?'. A variety of approaches were applied to promote the survey to the students, including social media, radio, the university website, stands in university cafeterias and a sleep stunt. NVivo V.12 was used to code and sort the questions. SETTING: A higher education institution in Norway. PARTICIPANTS: 555 students. RESULTS: The data collection provided 608 uncertainties, and the following prioritised top 10: (1) screen time, (2) stress, (3) educational achievements, (4) social relations, (5) mental health, (6) physical activity, (7) indoor environment, (8) substance abuse, (9) shift work and (10) sleep quality. Despite successful data collection, we found sleep to be a broad topic, and defining specific questions throughout the sorting and verification process proved difficult. CONCLUSIONS: We identified the prioritised top 10 research uncertainties as reported by students in higher education, ranking screen time first. However, the process was time and resource consuming. The research uncertainties addressed by the students showed great diversity, characterised by heterogeneity and a lack of specificity, making verification of the uncertainties challenging.

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

AIMS: The aim of this study was to describe the experiences of the transition to adulthood 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 critical appraisal tool. Qualitative data were extracted, meta-summarised, then meta-synthesized. FINDINGS: Nineteen qualitative studies were included in this review. Six themes illustrated 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 successful transition to adulthood by increased awareness and interventions from policy-makers and professionals in the health and social system.