Children with cerebral palsy are often prescribed adaptive seating systems for use in their wheelchairs for the purposes of improving posture and to help prevent the development of long-term deformity. However, clinical experience indicates that parents and the therapists who advocate the use of these systems do not always agree about the wheelchairs. This study discusses the development of questionnaires for both parents and therapists to measure differences in their opinions about the wheelchairs. The questions were developed through clinical experience, validation was through interviews to discuss topics important to the participants, and repeated application of the questionnaire ensured consistency. The reliability of the questions appears satisfactory and the interview responses demonstrate that the questions selected are important to both groups of stakeholders. However, it was found that parental concerns over their children's seating systems concentrated on functional and day-to-day management issues, whereas therapist concerns focused on technical issues and postural management. Both groups of stakeholder agreed that the questionnaires would be a useful precursor to attending a seating clinic appointment, as it could aid communication between the parent and provider and improve the efficiency and satisfaction of such an appointment. It appears the questionnaire has potential as an outcome measurement tool.
Children with severe types of cerebral palsy use adaptive seating systems to encourage function and assist in delaying the development of deformity. These systems are often assessed for and provided by occupational therapists. However, there has been no unifying policy or theoretical basis on which these systems are provided and research evidence is lacking, with studies tending to be small and non-controlled. The International Classification of Functioning, Disability and Health (World Health Organisation 2001a,b) aims to establish a common language for clinical practice as well as research, while bringing together the opposing social and medical models of health care delivery. This paper suggests that the ICF model is an ideal theoretical basis for adaptive seating system assessment and provision, given that these systems often conflict between the medical model of reducing or delaying impairment of body functions and structures and the social model of children and families accessing life and environmental situations through mobility and seating equipment. The paper considers all the domains of the ICF with regard to the current literature. It concludes that using the model in the context of providing adaptive seating gives occupational therapists both a powerful tool for communicating with children and families as well as managers and a basis for evaluating practice.
An important consideration in planning services for disabled children is to establish the need, including the size of the potential beneficiary group. However, surveys are expensive and time consuming (especially surveys of disability, which has a low prevalence within the population), and can raise expectations of service for patients who are often very unsure about how to cope with their disabled child. The World Health Organization (WHO) has produced a series of survey tools which have been used to identify disabled children in settings where a service is planned. Zaman et al, produced the '10 Question Screen', a simple screening tool for use by community health staff to identify disabilities among children in the community. Both the WHO survey tools and the 10 Question Screen rely on trained primary health care (PHC) or community-based rehabilitation (CBR) staff. The small study reported here shows that schoolchildren are effective identifiers of disabled children within their home communities and may be a useful resource when there are no trained CBR or PHC workers to conduct surveys. Furthermore, the children's ability to identify within the five major disability groups was relatively robust when compared with medical diagnosis.
Although there has been research focused on the disabling consequences of HIV/AIDS, there has been very little documented information about HIV/AIDS for individuals with disability prior to infection. There is evidence to suggest that people with disabilities face inequalities in accessing health information and services. The aim of this study was to explore whether disabled and non-disabled young adults in Swaziland perceive HIV/AIDS similarly. A qualitative study using focus-group discussions was conducted. Four focus groups were conducted with a total of 56 non-disabled adults (aged 16-29 years) and four focus groups were conducted with a total of 32 adults with either a physical or hearing disability (aged 18-32 years). The focus-group schedule explored knowledge about HIV/AIDS, personal risk and experiences of health-seeking practices. Information and awareness about HIV/AIDS was good in both rural and urban areas among the non-disabled participants, who obtained their information from a wide range of sources. In contrast, participants with disability, who obtained information about HIV/AIDS from a limited range of sources, lacked knowledge about HIV/AIDS and were misinformed about modes of transmission. Women with disabilities described experiences of sexual exploitation and abuse, which was perceived to be higher among disabled women than their non-disabled peers; they felt this was because disabled women were perceived to be 'free' from the HIV virus by non-disabled men. Further research is necessary to enable HIV/AIDS programmes to address the specific needs of people with disabilities.
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