Recalling that a majority of those who need assistive technology do not have access to it, and that this has a significant impact on the education, livelihood, health and well-being of individuals, and on families, communities and societies, Member States adopted a resolution on Improving access to assistive technology during the 71st World Health Assembly in May 2018. Among other mandates, Member States requested the Director-General of the World Health Organization (WHO) to prepare a global report on effective access to assistive technology in the context of an integrated approach, based on the best available scientific evidence and international experience, with the participation of all levels within the organization and in collaboration with all relevant stakeholders. In fulfilling this commitment, aiming to improve access to assistive technology, this global report: • presents the first comprehensive data set of its kind and analysis of current assistive technology access; • draws the attention of governments and civil societies to the need for, and benefits of, assistive technology, including its return on investment; • makes recommendations for concrete actions that will improve access; • supports implementation of the UN Convention on the Rights of Persons with Disabilities; and • contributes towards achieving the Sustainable Development Goals, especially in making universal health coverage (UHC) inclusive – leaving no one behind. The global report explores assistive technology from a variety of perspectives.
Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
MULTIFILE
BACKGROUND: Non-use of and dissatisfaction with ankle foot orthoses (AFOs) occurs frequently. The objective of this study is to gain insight in the conversation during the intake and examination phase, from the clients’ perspective, at two levels: 1) the attention for the activities and the context in which these activities take place, and 2) the quality of the conversation. METHODOLOGY: Semi-structured interviews were performed with 12 AFO users within a two-week period following intake and examination. In these interviews, and subsequent data analysis, extra attention was paid to the needs and wishes of the user, the desired activities and the environments in which these activities take place. RESULTS AND CONCLUSION: Activities and environments were seldom inquired about or discussed during the intake and examination phase. Also, activities were not placed in the context of their specific environment. As a result, profundity lacks. Consequently, orthotists based their designs on a ‘reduced reality’ because important and valuable contextual information that might benefit prescription and design of assistive devices was missed. A model is presented for mapping user activities and user environments in a systematic way. The term ‘user practices’ is introduced to emphasise the concept of activities within a specific environment.
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