Assistive Products and Technology to Facilitate Activities and Participation for Children with Disabilities.

We aimed to identify activity limitations and participation restrictions encountered by children and youth with disabilities for which assistive products and technology could be helpful. We used a convergent, parallel, mixed-methods design involving a nationwide, French survey composed of closed questions (quantitative) and open questions (qualitative) that enlightened the quantitative data. A total of 1055 responses were received, and 962 included: 92 from children and youth with disabilities, 493 from relatives and 377 from professionals. Difficulties frequently checked and described in detail were participation in recreational activities, leaving the house and traveling, participating in a group, and getting ready. Transversal explanations for difficulties were spontaneously provided (e.g., lack of accessibility and mobility). Solutions proposed included personal assistive devices to facilitate home life, high-tech devices, devices to compensate for impaired body functions, and adaptation of the familiar environment and daily activities. Few public solutions were proposed. The necessity of human assistance was emphasized. The mixed-methods design and involvement of different stakeholders identified common, macroscopic trends in difficulties encountered and desired solutions. Products and technology are required in the following domains: the familiar environment, accessibility and mobility, sports and leisure, high-technology, and family support. We provide suggestions to facilitate the development of innovative solutions.

Starting from the needs: what are the appropriate sources to co-create innovative solutions for persons with disabilities?

PURPOSE: Technical solutions could facilitate activities and participation in individuals with disabilities. For the development of solutions, hackathons are a method of interdisciplinary collaboration. For hackathon, the definition of pain points that require solutions is crucial. We aimed to determine engineers' preferences and expectations regarding pain point qualities. METHODS: We used a collaborative approach involving individuals with disability, families, and healthcare professionals to determine pain points for use by engineering students during a disability Hackathon. A pain point bank was built using 3 upstream sources: a survey (350 responses, 20 pain points selected), interviews (8 children, 13 pain points), and a multidisciplinary workshop based on design thinking methods (45 people, 32 pain points). A fourth source was 20 adults with disabilities present during the Hackathon. Engineering students rated pain point qualities from each source in a questionnaire that included closed questions relating to predefined criteria: achievability, specificity, relevance and attractiveness and open questions to collect non-predefined quality criteria. RESULTS: Pain points from the workshop were most frequently used (48%); followed by on-site discussions with mentors (43%), the survey (38%), and interviews (31%). On-site discussions received the highest quality ratings followed by the workshop, survey, and interviews. Three quality criteria emerged from the responses to open questions: "representative", "empathy", and "real-need". CONCLUSIONS: To be actionable by engineers, pain points must relate to real needs, be achievable, specific, relevant and attractive but also representative and arouse empathy. We devised a checklist of qualities along with a toolbox of methods to achieve each.Implications For RehabilitationThe first step of the development of technical solutions for children and individuals with disabilities is the identification of their needs and their adequate formulation to be submitted to technical solutions providers.Daily life needs of individuals with disability were gathered for an engineering hackathon and proposed as pain points to 400 engineering students.To facilitate the development of solutions by engineers, pain points must relate to real needs, be specific, relevant, achievable and attractive; be representative and arouse empathy; a toolbox of needs collection methods is proposed to achieve each of those qualities.Discussions with individuals with disability and health professionals should be provided.

Perceived impact of lockdown on daily life in children with physical disabilities and their families during the COVID-19 pandemic.

BACKGROUND: The first lockdown during COVID-19 pandemic in France led to an abrupt change in children's daily lives. For children with physical disabilities and their families, activities were limited, access to healthcare and therapy was disrupted, and family organization was altered. The objective was to report the impact of the lockdown on daily life activities and well-being of children with physical disabilities as perceived by caregivers. METHODS: Two online national surveys were addressed to the parents of children with physical disabilities (ECHO survey: 6 April to 11 May 2020) and without disabilities (E-COPAIN survey: 24 April to 11 May 2020), confined at home during the lockdown. A lockdown impact score was calculated from difficulties related to children's well-being (morale, behaviour and social interaction) and daily life activities (schooling and physical activity) and compared between groups. Data on family environment, parental stress and concerns were collected. RESULTS: One thousand three hundred seventy-six children (9.45 ± 4.78 years, 54% girls) in ECHO survey and 367 children (7.3 ± 4.4 years, 48% girls) in E-COPAIN survey were included. A negative impact of lockdown was found on 81% of children with physical disabilities. Behavioural problems were significantly more frequent (59.5% vs. 47.4%, P < .005) and parental stress was higher (6.1 ± 3.33 vs. 5.3 ± 3.01, P = .005) in the ECHO group. Associated impairments (odds ratio [OR] = 1.45 [1.30-1.62], P < .001), parental stress (OR = 1.09 [1.06-1.12], P < .001) and continuation of rehabilitation (OR = 0.80 [0.72-0.89], P < .001) were determinants of the level of difficulty experienced. CONCLUSIONS: The lockdown had a considerable, negative impact on the daily life of children with disabilities and their families. Guiding policymakers with the essential daily life activities and the services to provide for children with physical disabilities would offer valuable insights to manage such a sanitary crisis and allow to identify the most vulnerable population.

Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey.

BACKGROUND: The daily lives of children with physical disabilities and their families have been significantly affected by the COVID-19 pandemic. The children face health risks, especially mental, behavioral, social and physical risks. OBJECTIVE: This study aimed to identify potential healthcare issues relating to the wellbeing of disabled children, continuity of rehabilitation and medical care, and parental concerns during the COVID-19 lockdown. METHODS: The Enfant Confinement Handicap besOins (ECHO [child lockdown disability needs]) national survey was developed by a multidisciplinary group and disseminated in France from April 6, 2020 via email and social networks. This online survey was addressed to the parents of children with physical disabilities aged 0 to 18 years. It explored the experiences of children and their families during the lockdown. Information regarding children's wellbeing, rehabilitation and family organization was collected. The first 1000 eligible surveys were analyzed. RESULTS: The children (mean [SD] age 9.5 [4.8] years) mostly had cerebral palsy (42%) or neuromuscular diseases (11%). The lockdown had negative effects on morale (44% of children), behaviour (55% of children) and social interactions (55% no contact with other children). Overall, 44% of children stopped physical activities; 76% were educated at home; 22% maintained medical follow-up, and 48% and 27% continued physiotherapy and occupational therapy respectively. For more than 60% of children, parents performed the therapy. The main parental concern was rehabilitation (72%) and their main difficulty was the mental load (50%); parents complained of lack of help and support (60%). CONCLUSIONS: This study highlighted substantial effects on the health of children with physical disabilities and loss of opportunity, with a massive interruption of medical follow-up and rehabilitation, during the lockdown. Regular assessment of the health benefit/risk is essential to support families and ensure continuity of care during a pandemic.