scholarly journals Standing frames for children with cerebral palsy: a mixed-methods feasibility study

2018 ◽  
Vol 22 (50) ◽  
pp. 1-232 ◽  
Author(s):  
Jane Goodwin ◽  
Jan Lecouturier ◽  
Anna Basu ◽  
Allan Colver ◽  
Sarah Crombie ◽  
...  
Keyword(s):  
Cerebral Palsy ◽  
Mixed Methods ◽  
Young People ◽  
Focus Groups ◽  
Clinical Effectiveness ◽  
Well Being ◽  
Subjective Well Being ◽  
Mineral Density ◽  
Irreversible Damage ◽  
Patient Reported

Background Standing frames are recommended as part of postural management for young people with cerebral palsy (CP) Gross Motor Function Classification System (GMFCS) level IV or V. They may have a variety of benefits, including improving bone mineral density, gastrointestinal function and social participation. The NHS needs to know if these benefits are real, given the cost implications of use and the reported negative effects (e.g. pain). The lack of evidence for the clinical effectiveness of standing frames demonstrates the need for evaluative research. Objective(s) The aim of the study was to explore the acceptability of a future trial to determine the clinical effectiveness of standing frames. Design A sequential mixed-methods design was used. The findings of each stage informed the next stage. We conducted surveys, focus groups and in-depth interviews. Participants Professionals who work with young people who use standing frames and parents who have a child who uses a standing frame took part in a survey of current standing frame practice (n = 551), a series of focus groups (seven focus groups, 49 participants in total) and a survey of research trial acceptability and feasibility (n = 585). Twelve young people who use a standing frame were interviewed. Results Standing frames were widely used as part of postural management for young people with CP both in school and at home but more frequently in school, and particularly by young people in primary school. Achieving the prescribed use was not always possible owing to resources, environment and family factors. Participation and activity engagement were important to young people. The majority of participants believed that standing frames research is necessary. Some reported concern that stopping standing frame use for a trial would cause irreversible damage. The maximum amount of time most health professionals and parents would agree to suspend standing frame use would be 12 weeks. Limitations Owing to the nature of recruitment, we could not calculate response rates or determine non-response bias. Therefore, participants may not be representative of all standing frame users. Conclusions Although parents and professionals who engaged in the qualitative aspect of this research and stakeholders who took part in the design workshops appreciated the lack of clinical evidence, our surveys, qualitative information and PPI demonstrated that most people had strong beliefs regarding the clinical effectiveness of standing frames. However, with key stakeholder engagement and careful planning, a trial would be acceptable. Future work We recommend a carefully planned trial that includes a pilot phase. The trial should evaluate the following question: ‘does using a standing frame in school improve patient-reported outcomes of participation (primary outcome), quality of life, subjective well-being, body function and body structure (secondary outcomes) in young children (aged 4–11 years) with CP GMFCS III–V?’. Funding The National Institute for Health Research Health Technology Assessment programme.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

scholarly journals Older Adults’ Subjective Well-being Following an Exergame Intervention “Bandit the Dolphin”: Focus Group Findings

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 169-170
Author(s):  
Brittany Drazich ◽  
Breanna Crane ◽  
Kyle Moored ◽  
Karl Shieh ◽  
Janiece Taylor ◽  
...  
Keyword(s):  
Mental Health ◽  
Older Adults ◽  
Mental Illness ◽  
Focus Groups ◽  
Well Being ◽  
Community Dwelling ◽  
Mental Illness Stigma ◽  
Subjective Well Being ◽  
Future Health ◽  
Adult Participants

Abstract Due to generational mental illness stigma and under diagnosis of mental illness, older adults do not always receive the mental health help that they need. One unique technology that has the potential to improve mood in older adults is exergames, or exercise video games. The objective of this sub-study (main study: Stimulation With Intricate Movements “SWIM” Study) was to explore older adults’ mood following an exergame intervention called “Bandit the Dolphin,” created by the Johns Hopkins KATA Studio. Researchers conducted three focus groups with 14 community-dwelling older adult participants who took part in the SWIM Study exergame intervention. The semi-structured focus groups were transcribed, coded, and analyzed using deductive and inductive techniques described by Ray Maietta’s “sort and sift, think and shift” method. Three themes related to playing “Bandit the Dolphin” and mood emerged. First, participants described their perceived association between activity and mood. Participants felt that both active and passive activities, “Bandit the Dolphin” and otherwise, improved their mood through the “fun” factor, and through feelings of achievement. Second, the participants described that the competition and frustration of playing “Bandit the Dolphin” increased eventual feelings of achievement. Third, participants described how feelings of immersion, or being absorbed in the game, helped them forget their other life concerns. These findings provide a better understanding of older adults’ perceived relationship between an exergame intervention, “Bandit the Dolphin,” and short-term improved mood. Future health and engineering researchers should explore exergames as a potential tool to improve the mental health of older adults.

Impact of Engaging Students in Health Survey Data Analysis and as Full Partners in School Change: Results From a Mixed Methods Study

2021 ◽  
pp. 152483992110484
Author(s):  
Helen M. Beattie ◽  
Courtney A. FitzGerald ◽  
Sharon N. Koller ◽  
Karen S. Scott ◽  
Bernice Raveche Garnett ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Focus Group ◽  
Focus Groups ◽  
Risk Behavior ◽  
Youth Development ◽  
School Change ◽  
Well Being ◽  
Youth Risk Behavior Survey ◽  
Youth Risk Behavior ◽  
Health And Well Being

Young people demand and deserve participation in shaping the health and well-being of their community. Getting to Y: Youth Bring Meaning to the Youth Risk Behavior Survey (GTY) is a positive youth development initiative, whereby students analyze local youth health data and create change. This article adds definitive evidence to support the theoretical foundations of GTY expounded by Garnett et al. (2019). A mixed methods convergent study design, collecting quantitative data from pre- and postintervention surveys and qualitative data from focus groups, was enacted during the 2018–2019 school year. Survey participants were 256 students attending 20 Vermont middle/high schools. Surveys measured self-efficacy, health literacy, civic engagement, resiliency, and knowledge. Focus groups with 50 students solicited open-ended feedback. Wilcoxon signed-rank tests determined student-level change over time. Focus group transcripts were coded using grounded theory and a priori codes from the survey. Statistically significant improvements were seen in average scores from pre- to postintervention surveys in all five domains and differences in effect by gender. Results from the focus group complement the quantitative findings. Participation in GTY positively affected youth participant’s understanding of their own health and well-being and increased agency to take action on behalf of themselves and their community. As the Youth Risk Behavior Survey is available nationwide, GTY is poised for replication to critically engage youth with relevant data to inform social change.

The subjective well-being of young people aging out of care

2013 ◽  
Vol 35 (10) ◽  
pp. 1705-1711 ◽  
Author(s):  
Tamar Dinisman ◽  
Anat Zeira ◽  
Yafit Sulimani-Aidan ◽  
Rami Benbenishty
Keyword(s):  
Young People ◽  
Well Being ◽  
Aging Out ◽  
Subjective Well Being ◽  
Aging Out Of Care

scholarly journals Genetic basis of falling risk susceptibility in the UK Biobank Study

2020 ◽  
Vol 3 (1) ◽  
Author(s):  
Katerina Trajanoska ◽  
Lotta J. Seppala ◽  
Carolina Medina-Gomez ◽  
Yi-Hsiang Hsu ◽  
Sirui Zhou ◽  
...  
Keyword(s):  
Genetic Correlations ◽  
Well Being ◽  
Risk Scores ◽  
Subjective Well Being ◽  
Uk Biobank ◽  
Mineral Density ◽  
Polygenic Inheritance ◽  
Intrinsic Factors ◽  
A Genome ◽  
The Uk

Abstract Both extrinsic and intrinsic factors predispose older people to fall. We performed a genome-wide association analysis to investigate how much of an individual’s fall susceptibility can be attributed to genetics in 89,076 cases and 362,103 controls from the UK Biobank Study. The analysis revealed a small, but significant SNP-based heritability (2.7%) and identified three novel fall-associated loci (Pcombined ≤ 5 × 10−8). Polygenic risk scores in two independent settings showed patterns of polygenic inheritance. Risk of falling had positive genetic correlations with fractures, identifying for the first time a pathway independent of bone mineral density. There were also positive genetic correlations with insomnia, neuroticism, depressive symptoms, and different medications. Negative genetic correlations were identified with muscle strength, intelligence and subjective well-being. Brain, and in particular cerebellum tissue, showed the highest gene expression enrichment for fall-associated variants. Overall, despite the highly heterogenic nature underlying fall risk, a proportion of the susceptibility can be attributed to genetics.

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