Leisure participation for school-aged children with Down syndrome

Purpose.?To describe leisure participation for school-aged children with Down syndrome and to investigate how factors, classified by the World Health Organisation's International Classification of Functioning, Disability and Health, influence their leisure participation.

Method.?Families in Western Australia with a child aged 5–18 years with Down syndrome were surveyed in a population-based study (n == 208) in 2004.

Results.?One-third of parents reported that their child with Down syndrome had no friends although half reported two or more friends. Factors affecting number of friendships included the child's functional ability, behavioural issues and parent's availability of time. Those children with higher functional independence scores in daily tasks were more likely to have two or more friends than those with lower functional independence scores (OR: 1.02, 95%% CI 1.01–1.04 for a single point increase in WeeFIM score). All children participated in predominantly solitary and sedentary leisure activities.

Conclusions.?Leisure participation was affected by complex factors both within and external to the child with Down syndrome. Further investigation of the relevance of these factors to leisure may enable more satisfying and meaningful participation in leisure for school-aged children with Down syndrome.     

How clerks understand the requests of people living with aphasia in service encounters

ABSTRACT

Aphasia often restricts participation. People living with aphasia (PLWA) engage in fewer activities, which leads to fewer interactions than before aphasia. Analyses of interactions with non-familiar people in activities of daily life could provide knowledge about how to integrate these situations in rehabilitation and facilitate ongoing PLWA participation post-rehabilitation. This qualitative study is the first to examine how PLWA make their requests understood in service encounters despite aphasia. Six people living with moderate or severe aphasia were video-recorded in situations of service encounters, e.g., pharmacies, specialised shops, restaurants, and others. We identified fifty-nine occurrences with one or several difficulties in the formulation of the request. They were examined, including the clerks’ responses and ensuing interaction using multimodal conversation analysis. Results showed that PLWA used nonverbal communication within the physical environment and the context of the interaction to support verbal production. In the majority of situations, the clerks understood the request promptly. In other situations, they both collaborated to achieve a clear understanding of the request. Moreover, the findings attest to the competence of people living with moderate or severe aphasia in engaging in service encounters and add to the knowledge base about interaction and social participation in aphasia.     

‘It’s important that we learn too’: Empowering parents to facilitate participation in physical activity for children and youth with disabilities

Aim: The actions and behaviors of parents have been identified as key factors that influence a child’s participation in physical activity. However, there is limited knowledge of how parents can be supported to embody facilitative roles. This study aimed to explore how an ecological intervention encourages parents of children with disabilities to develop as facilitators, to enable ongoing physical activity participation in a child’s local environment.

Methods: A qualitative design using grounded theory was employed. Forty four parents (26 mothers, 18 fathers) of 31 children with a range of disabilities (mean age 12y 6m (SD 2y 2m); 18 males) partaking in the Local Environment Model intervention at Beitostolen Healthsports Centre in Norway participated in the study. Data were derived from the triangulation of semi-structured interviews and participant observation. Data analysis was an iterative approach of constant comparison, where data collection, memo writing, open, axial and selective coding analysis, were undertaken simultaneously. Findings were consolidated into a model describing the central phenomenon and its relationship to other categories.

Results: Thematic concepts uncovered in this study describe a social process of parent learning and empowerment, comprising three primary components; (i) active ingredients of the intervention that enabled learning and empowerment to transpire, (ii) parent learning and empowerment as a process, and (iii) related outcomes.

Conclusion: A family-centered approach, encompassing family-to-family support, may enhance physical activity participation outcomes for children and youth with disabilities.     

End-of-Life Communication: A Retrospective Survey of Representative General Practitioner Networks in Four Countries

ContextEffective communication is central to high-quality end-of-life care.ObjectivesThis study examined the prevalence of general practitioner (GP)-patient discussion of end-of-life topics (according to the GP) in Italy, Spain, Belgium, and The Netherlands and associated patient and care characteristics.MethodsThis cross-sectional, retrospective survey was conducted with representative GP networks. Using a standardized form, GPs recorded the health and care characteristics in the last three months of life, and the discussion of 10 end-of-life topics, of all patients who died under their care. The mean number of topics discussed, the prevalence of discussion of each topic, and patient and care characteristics associated with discussions were estimated per country.ResultsIn total, 4396 nonsudden deaths were included. On average, more topics were discussed in The Netherlands (mean = 6.37), followed by Belgium (4.45), Spain (3.32), and Italy (3.19). The topics most frequently discussed in all countries were “physical complaints” and the “primary diagnosis,” whereas “spiritual and existential issues” were the least frequently discussed. Discussions were most prevalent in The Netherlands, followed by Belgium. The GPs from all countries tended to discuss fewer topics with older patients, noncancer patients, patients with dementia, patients for whom palliative care was not an important treatment aim, and patients for whom their GP had not provided palliative care.ConclusionThe prevalence of end-of-life discussions varied across the four countries. In all countries, training priorities should include the identification and discussion of spiritual and social problems and early end-of-life discussions with older patients, those with cognitive decline if possible, and those with non-malignant diseases.     

The power of power wheelchairs: Mobility choices of community-dwelling,older adults

Background: Power wheelchairs are purported to have a positive effect on health, occupation, and quality of life. However, there is limited knowledge about what factors shape power wheelchair use decisions. Aims/objectives: A study was undertaken to understand the mobility choices of community-dwelling, power wheelchair users. Methods: A series of semi-structured qualitative interviews was conducted with 13 older adult power wheelchair users. Participants were interviewed at enrollment and four months later. Data analysis was informed by Bourdieu’s theoretical constructs of habitus, capital, and field. Results: Three main styles of power wheelchair use were identified: reluctant use, strategic use, and essential use, and each type is illustrated using an aggregate case study. Conclusion/significance: These findings highlight the need to alter the power relationship that exists between prescribers and device users and to effect policy changes that enable people with physical impairments to make as wide a range of mobility choices as possible.     

Les enjeux de l’autonomisation de jeunes adultes confrontés à des troubles psychiques

In this paper, we offer to describe and analyze the social uses of the notion of autonomy in the life courses of young adults facing psychic disorders. We will rely on a three-year long longitudinal survey that was conducted in the context of a sociology thesis with 21 young adults treated in psychiatric and medico-social institutions. We will describe in what manner issues relating to these young users’ commitment in the support put in place around them emerge amongst differentiated or shared representations of autonomy.