Comment droit et éthique s’enrichissent mutuellement dans la prise en charge médicale des personnes avec handicap

Whatever his or her disability, a person has the right to medical care of the same quality as any other patient. The law tries to meet the needs of vulnerable people, regardless of their situation. For example, a minor, disabled or not, may seek a treatment while preserving confidentiality regarding his/her parents. Privacy is a concept that does not begin at 18. In France, the law of 4 March 2002 already addressed this hypothesis; the law of 26 January 2016 modernizing our health system extended it. An adult, disabled or not, may need help not only for administrative and financial procedures, but also for medical or medicosocial matters. The law offers various support solutions with the family, guardian, support person, relatives, caregivers, attorneys involved with a mandate for future protection. In medical practice, a number of situations, simple in theory, can be very problematic. The ethical approach will be essential to help deal with all these questions.     

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.     

‘Understanding Disability’: Evaluating a contact-based approach to enhancing attitudes and disability literacy of medical students

Background

Health disparities and disparities in the provision of healthcare to people with disabilities remains a topic of concern. Research demonstrates that attitudes of healthcare providers contribute to this disparity. The approach to disability education and training in medical school warrants evaluation.

Social cognitive correlates of device-measured and self-reported physical activity in Black and White individuals with multiple sclerosis

BackgroundThere is increasing research interest regarding physical activity behavior among persons with multiple sclerosis (MS), yet there is little known about physical activity and its correlates in Black persons with MS.ObjectiveThis cross-sectional study assessed associations among social cognitive theory (SCT) variables and device-measured and self-reported physical activity in samples of Black and White persons with MS.MethodsParticipants included 67 Black and 141 White persons with MS who wore an ActiGraph accelerometer on a belt around the waist measuring moderate-to-vigorous physical activity (MVPA) for seven days and completed a battery of questionnaires. Questionnaires included demographic and clinical characteristics, leisure-time exercise, exercise self-efficacy, overcoming barriers self-efficacy, function, social support, exercise outcome expectations, and goal setting and planning.ResultsBlack participants with MS engaged in significantly less MVPA, but not sedentary behavior or light physical activity, than the White participants with MS. Black participants further had significantly lower levels of exercise self-efficacy and outcome expectations than the White sample. All SCT correlates were significantly correlated with self-reported physical activity, but only exercise and barriers self-efficacy, perceived function, and exercise goal setting were associated with device-measured MVPA. The difference in physical activity between Black and White participants with MS was accounted for by differences in exercise self-efficacy and outcome expectations.ConclusionsResearchers should consider developing behavioral interventions that target exercise self-efficacy and outcome expectations as SCT variables for increasing physical activity in Black persons with MS.     

The WHO active ageing pillars and its association with survival: Findings from a population-based study in Spain

BackgroundThe World Health Organization’s active ageing model is based on the optimisation of four key “pillars”: health, lifelong learning, participation and security. It provides older people with a policy framework to develop their potential for well-being, which in turn, may facilitate longevity. We sought to assess the effect of active ageing on longer life expectancy by: i) operationalising the WHO active ageing framework, ii) testing the validity of the factors obtained by analysing the relationships between the pillars, and iii) exploring the impact of active ageing on survival through the health pillar.MethodsBased on data from a sample of 801 community-dwelling older adults, we operationalised the active ageing model by taking each pillar as an individual construct using principal component analysis. The interrelationship between components and their association with survival was analysed using multiple regression models.ResultsA three-factor structure was obtained for each pillar, except for lifelong learning with a single component. After adjustment for age, gender and marital status, survival was only significantly associated with the physical component of health (HR = 0.66; 95% CI = 0.47−0.93; p = 0.018). In turn, this component was loaded with representative variables of comorbidity and functionality, cognitive status and lifestyles, and correlated with components of lifelong learning, social activities and institutional support.ConclusionAccording to how the variables clustered into the components and how the components intertwined, results suggest that the variables loading on the biomedical component of the health pillar (e.g. cognitive function, health conditions or pain), may play a part on survival chances.     

Dramatic improvement of truncal tardive dystonia following globus pallidus pars interna deep brain stimulation

Truncal predominant tardive dystonia is an uncommon presentation of dystonia, and may be associated with significant disability. We report a patient with near-complete resolution of severe, disabling truncal tardive dystonia following globus pallidus pars interna deep brain stimulation. Her unusual clinical presentation highlights the difficulties in diagnosing unusual forms of dystonia, and the therapeutic gains that can be achieved once the diagnosis is recognised.     

Qualitative research within the Deaf community in Northern Ireland: A multilingual approach

In this methodology article, the authors illustrate how they conducted multilingual qualitative research in an exploration of the barriers that Deaf people in Northern Ireland face when attempting to access the system of justice. The authors’ research practices are informed, to the extent possible, by the principles of community-based participatory research (CBPR). They explore the challenges of conducting research in American Sign Language (ASL), British Sign Language (BSL), and Irish Sign Language (ISL), and spoken English, facilitated by sign language interpreters fluent in BSL and ISL. Centering the research on the lived experiences of Deaf people who navigate the system of justice, the authors implemented CBPR-informed research methods, which ultimately led to sustained discussion and joint action by the authors and members of the Northern Ireland Deaf community aimed at the removal of barriers that Deaf people face when interacting with the justice system. By writing about their methodological approach in Northern Ireland, the authors wish to be transparent about their work in the hope that other researchers can replicate their successes and avoid the limitations of conducting this work in partnership with members of the Deaf community in other countries.     

Domestic violence against elderly with disability

Abuse against elders with disabilities is a growing problem as the world population ages. Though they require mandatory reporting, these cases are most frequently not detected or not reported by health professionals for a variety of reasons, including the difficulty of making an accurate diagnosis. By performing a retrospective analysis of alleged domestic violence cases against elders with moderate or severe disability, presented to medical forensic examination at the North Branch of the National Institute of Legal Medicine and Forensic Sciences of Portugal, in Porto, between 2005 and 2013 (n = 70), we aimed to improve our knowledge of some demographic and forensic characteristics of these cases as well as improve their detection and prevention. The most frequently reported type of abuse was physical (86%), allegedly perpetrated by male abusers (63%) living with their victims (90%), who were most commonly their children (47%) or partners (49%; when victims are married). The victims were most frequently female (63%) who had motor disabilities (49%) and presented a history of previous episodes of abuse in 74% of cases; however, only 28% were previously reported. The physical consequences were most frequently minor injuries (95%) with permanent consequences (scars) in only 6.8% of the cases. The injuries were multiple in the majority of the cases (64%), and the preferred locations were the head and neck (75%). Elderly females with motor disabilities appear to have a greatest risk of domestic violence, which translates, most frequently, into multiple injuries that are mainly in the head and neck.     

The Measurement of Disability in the Elderly: A Systematic Review of Self-Reported Questionnaires

ObjectiveTo analyze the contents and formats of general self-reported questionnaires on disability that are designed for and/or are widely applied in the elderly population to depict a complete picture of this field and help researchers to choose proper tools more efficiently.MethodsA broad systematic literature search was performed in September 2013 and included the following databases: MEDLINE, EMBASE, CINAHL, PsycINFO, and PROQOLID. The publication language was limited to English and Chinese. Two review authors independently performed the study selection and data extraction. All of the included instruments were extracted and classified using the International Classification of Functioning, Disability, and Health framework.ResultsOf 5569 articles retrieved from the searches and 156 articles retrieved from the pearling, 22 studies (including 24 questionnaires) fulfilled the inclusion criteria. From these, 42 different domains and 458 items were extracted. The most frequently used questionnaire was the Barthel Index followed by the Lawton and Brody Instrumental Activities of Daily Living Scale and the Katz Index of Activities of Daily Living, respectively. The contents and formats of the questionnaires varied considerably. Activities and participation were the most commonly assessed dimensions. In addition, the Activities of Daily Living, mobility and the Instrumental Activities of Daily Living Scale were the most common domains assessed among the included questionnaires.ConclusionsAmong the 24 included questionnaires, the most frequently used questionnaires were the Barthel Index, Lawton and Brody Instrumental Activities of Daily Living Scale, and Katz Index of Activities of Daily Living. The content and format of the questionnaires varied considerably, but none of the questionnaires covered all essential dimensions of the International Classification of Functioning, Disability, and Health framework.