Doctor-patient communication with people with intellectual disability - a qualitative study

<p>Abstract</p> <p>Background</p> <p>People with intellectual disability (ID) expressed dissatisfaction with doctor-patient communication and mentioned certain preferences for this communication (our research). Since many people with ID in the Netherlands have recently moved from residential care facilities to supported accommodations in the community, medical care for them was transferred from ID physicians (IDPs) to general practitioners (GPs) in the vicinity of the new accommodation. We addressed the following research question: 'What are the similarities and differences between the communication preferences of people with ID and the professional criteria for doctor-patient communication by GPs?'</p> <p>Methods</p> <p>A focus group meeting and interviews were used to identify the preferences of 12 persons with ID for good communication with their GP; these were compared with communication criteria used to assess trainee GPs, as described in the MAAS-Global manual.</p> <p>Results</p> <p>Eight preferences for doctor-patient communication were formulated by the people with ID. Six of them matched the criteria used for GPs. Improvements are required as regards the time available for consultation, demonstrating physical examinations before applying them and triadic communication.</p> <p>Conclusions</p> <p>People with ID hold strong views on communication with their doctors during consultations. GPs, people with ID and their support workers can further fine-tune their communication skills.</p

Health Conditions and Their Impact among Adolescents and Young Adults with Down Syndrome

Objective: To examine the prevalence of medical conditions and use of health services among young adults with Down syndrome and describe the impact of these conditions upon their lives. Methods: Using questionnaire data collected in 2011 from parents of young adults with Down syndrome we investigated the medical conditions experienced by their children in the previous 12 months. Univariate, linear and logistic regression analyses were performed. Results: We found that in addition to the conditions commonly experienced by children with Down syndrome, including eye and vision problems (affecting 73%), ear and hearing problems (affecting 45%), cardiac (affecting 25%) and respiratory problems (affecting 36%), conditions also found to be prevalent within our young adult cohort included musculoskeletal conditions (affecting 61%), body weight (affecting 57%), skin (affecting 56%) and mental health (affecting 32%) conditions and among young women menstrual conditions (affecting 58%). Few parents reported that these conditions had no impact, with common impacts related to restrictions in opportunities to participate in employment and community leisure activities for the young people, as well as safety concerns. Conclusion: There is the need to monitor, screen and provide appropriate strategies such as through the promotion of healthy lifestyles to prevent the development of comorbidities in young people with Down syndrome and, where present, to reduce their impact

Prevalence of Mental, Behavioural, and Neurobehavioural Disorders

Individuals with intellectual and developmental disabilities (IDD) are known to be at high risk of developing a comorbid mental or behavioural disorder. However, there has only recently been an increased focus on the epidemiology of such disorders in the older population of people with IDD. Attempting to precisely quantify the prevalence and incidence of disorders in this cohort remain difficult, due to complications associated with diverse sampling methodologies, differing definitions of ‘older’, and variations in diagnostic criteria. Nonetheless, the expanding research base since the 1980s indicates that mental and behavioural disorders occur at higher rates among older people with IDD when compared to their mainstream peers. The prevalence of mental disorders for the older cohort tends to decrease in relation to the severity of the intellectual disability, but the reverse is true for behavioural disorders. Estimated prevalence rates for mental disorders vary considerably, but many studies report rates in the 20–30% range, which is higher than for the general community. Behavioural disorders are also very common in older people with IDD but are again hard to quantify precisely. Observed differences in prevalence between people with IDD and the general community may diminish over the age of 70 as dementias become more commonplace in both populations. Finally, some research indicates a greater likelihood of mental disorder amongst the older female population of people with IDD

Issues of sexuality and relationships

Sexuality in the lives of people with intellectual disability is almost always conflated with sexual abuse, sexual behaviours, sexual knowledge and questions about capacity to “be” sexual. Rarely is sexuality discussed in a more holistic way that acknowledges pleasure, desire, identity and “self-authored” sexual expression. Writers like Michael Gill (2015) suggested this is due to sexual ableism which he defined as “the system of imbuing sexuality with determinations of qualification to be sexual based on criteria of ability, intellect, morality, physicality, appearance …” (p. 3). Through this lens, sexuality in the lives of people with intellectual disability is mediated by ideas about capacity and competence, assumptions of desirability and overshadowed by a discourse of risk and vulnerability. Foley (2017) reported that underpinning this discourse is a “paternalistic regime” whereby the sexual lives of people with intellectual disability are strongly surveilled, often by parents or other caregivers. He described this regime as being played out where people with intellectual disability, despite their chronological adulthood, “either must ask permission and/or are prevented by their parents from taking control over their social/sexual lives” (p. 6)