The authenticity of using visual methods to represent the emotional well-being of children and young people with cerebral palsy

Physiotherapy ◽  
2020 ◽  
Vol 107 ◽  
pp. e71
Author(s):  
D. Pickering ◽  
P. Gill ◽  
C. Reagon ◽  
J. Davies
2019 ◽  
Author(s):  
Elvira Perez Vallejos ◽  
Liz Dowthwaite ◽  
Helen Creswich ◽  
Virginia Portillo ◽  
Ansgar Koene ◽  
...  

BACKGROUND Algorithms rule the online environments and are essential for performing data processing, filtering, personalisation and other tasks. Research has shown that children and young people make up a significant proportion of Internet users, however little attention has been given to their experiences of algorithmically-mediated online platforms, or the impact of them on their mental health and well-being. The algorithms that govern online platforms are often obfuscated by a lack of transparency in their online Terms and Conditions and user agreements. This lack of transparency speaks to the need for protecting the most vulnerable users from potential online harms. OBJECTIVE To capture young people's experiences when being online and perceived impact on their well-being. METHODS In this paper, we draw on qualitative and quantitative data from a total of 260 children and young people who took part in a ‘Youth Jury’ to bring their opinions to the forefront, elicit discussion of their experiences of using online platforms, and perceived psychosocial impact on users. RESULTS The results of the study revealed the young people’s positive as well as negative experiences of using online platforms. Benefits such as being convenient and providing entertainment and personalised search results were identified. However, the data also reveals participants’ concerns for their privacy, safety and trust when online, which can have a significant impact on their well-being. CONCLUSIONS We conclude by making recommendations that online platforms acknowledge and enact on their responsibility to protect the privacy of their young users, recognising the significant developmental milestones that this group experience during these early years, and the impact that technology may have on them. We argue that governments need to incorporate policies that require technologists and others to embed the safeguarding of users’ well-being within the core of the design of Internet products and services to improve the user experiences and psychological well-being of all, but especially those of children and young people. CLINICALTRIAL N/A


BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  

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.


2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Darren Sharpe ◽  
Mohsen Rajabi ◽  
Clement Chileshe ◽  
Sitali Mayamba Joseph ◽  
Ibrahim Sesay ◽  
...  

Abstract Background The mental health impact of the COVID-19 pandemic and quarantining on children and young people (CYP) living in low- and middle-income countries (LMICs) has yet to be fully comprehended. CYP in LMICs are at utmost risk, given the COVID-19-related restrictions and social distancing measures, resulting in reduced access to school-based services for nutritional and mental health needs. This study examined mental health of CYP during the first COVID-19 lockdown in Zambia and Sierra Leone. Method A total of 468 disabled and disadvantaged CYP aged 12 to 25 completed a planning tool that comprised the short Warwick-Edinburgh Mental Wellbeing Scale (SWEMWBS), as well as open-ended questions covering social connectedness, physical distancing and educational challenges during the lockdown. The community coaches screened individuals and families who could be eligible to receive emergency aid, and based on a convenience sample following distribution of aid, recipients were invited to complete the planning tool. Results The data showed that participants in the global south have increasing anxieties and fears centred on accessing offline educational resources and income loss in the family effecting food security and their ability to return to education. Mean (SD) SWEMWBS scores for all participants in Zambia and Sierra Leone, were 19.61 (3.45) and 21.65 (2.84), respectively. Mental well-being scores were lower in females, children aged 12–14 and participants with two or more disabilities. Factors significantly associated with poor mental wellbeing in the sample were: type of disability, nationality, peer relationships, connection to others during the pandemic, knowledge about COVID-19, worry about the long-term impact of COVID-19, and the types of self-isolating. Conclusion The study shows that participants who self-reported low levels of COVID-19 health literacy also scored low on the mental wellbeing self-assessment. Yet, despite undoubted limited resources, these CYP are doing well in identifying their needs and maintaining hope in the face of the problems associated with COVID-19 in countries where stigma persists around mental ill-health.


2021 ◽  
Vol 5 (1) ◽  
pp. e000981
Author(s):  
Tapomay Banerjee ◽  
Amjad Khan ◽  
Piriyanga Kesavan

Special schools play a significant role in the daily lives of children and young people with special educational needs and disabilities. We explored the impact of the COVID-19-related first lockdown and resulting school closure by surveying parents whose children attended three special schools in Bedford, UK. We asked about anxiety and impact on emotional well-being and education. We received 53 responses from parents: 31 felt their child was more anxious during the lockdown period/school closure compared with beforehand and 42 felt their child’s emotional well-being had been affected. Children and young people attending special schools may have struggled both academically and emotionally during the COVID-19 pandemic.


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