Kitty-Rose Foley

Influence of the Environment on Participation in Social Roles for Young Adults with Down Syndrome

Background The concept of disability is now understood as a result of the interaction between the individual, features related to impairment, and the physical and social environment. It is important to understand these environmental influences and how they affect social participation. The purpose of this study is to describe the social participation of young adults with Down syndrome and examine its relationship with the physical and social environment. Methods Families ascertained from the Down syndrome ‘Needs Opinion Wishes’ database completed questionnaires during 2011. The questionnaires contained two parts, young person characteristics and family characteristics. Young adults’ social participation was measured using the Assessment of Life Habits (LIFE-H) and the influences of environmental factors were measured by the Measure of the Quality of the Environment (MQE). The analysis involved descriptive statistics and linear and logistic regression. Results Overall, participation in daily activities was higher (mean 6.45) than in social roles (mean 5.17) (range 0 to 9). When the physical and/or social environment was reported as a facilitator, compared to being no influence or a barrier, participation in social roles was greater (coef 0.89, 95%CI 0.28, 1.52, coef 0.83, 95%CI 0.17, 1.49, respectively). The relationships between participation and both the physical (coef 0.60, 95% CI −0.40, 1.24) and social (coef 0.20, 95%CI −0.47, 0.87) environments were reduced when age, gender, behavior and functioning in ADL were taken into account. Conclusion We found that young adults’ participation in social roles was influenced more by the physical environment than by the social environment, providing a potentially modifiable avenue for intervention.

Change in Gross Motor Abilities of Girls and Women with Rett Syndrome Over a 3- to 4- Year Period

Rett syndrome is a rare but severe neurological disorder typically associated with a mutation in the MECP2 gene. We describe change in gross motor function over 3 to 4 years for 70 subjects participating in the Australian Rett Syndrome Database. Linear regression was used to assess relationships with age, genotype, and general and complex gross motor skills scores measured on the Gross Motor Scale for Rett syndrome. Skills were slightly better or maintained in approximately 40% of subjects and slightly decreased in approximately 60%. Teenagers and women who walked in 2004 were less likely to lose complex skills than those younger. Girls with a p.R294X mutation were more likely to lose complex motor skills, otherwise skill changes were spread across the mutation categories. In conclusion, small changes were observed over this period with greater stability of skills in teenagers and women with the ability to walk.

Patterns of Depressive Symptoms and Social Relating Behaviors Differ Over Time From Other Behavioral Domains for Young People With Down Syndrome

AbstractPeople with intellectual disabilities are at a higher risk for experiencing behavioral, emotional, and psychiatric problems in comparison with the general population. People with Down syndrome have been reported as experiencing fewer behavioral problems than others with intellectual disability, although still at a greater level than the non-intellectually disabled population, except for depression and Alzheimer disease. The aim of this study was to describe the trajectories of subscales of behavior, including depressive symptoms, communication disturbance, anxiety, disruptiveness, and social relating abilities, for young adults with Down syndrome.Families of young adults with Down syndrome living in Perth, Western Australia, participated in a questionnaire study over 8 years, 2004 (n = 255), 2009 (n = 191), and 2011 (n = 188). Questionnaires collected information about young person characteristics and family functioning. The parent-completed Developmental Behavior Checklist-Adult (DBC-A) and Developmental Behavior Checklist-Primary Carer Version (DBC-P) were used to measure emotional and behavioral problems. These measures include the following subscales: disruptive, communication and anxiety disturbances, self-absorbed, antisocial, depressive, and social relating.DBC score declined from 2004 to 2011 reflecting an improvement in behavior in the self-absorbed (coeff −0.011, 95% confidence interval (CI) −0.031, −0.008), anxiety (coef −0.009 95%CI −0.129, −0.006), communication disturbances (coeff −0.008, 95% CI −0.012, −0.005) and disruptive/antisocial behavior (coeff −0.013, 95% CI −0.016, −0.009) subscales. Subscales for depressive symptoms and social relating problems decreased less (coeff −0.003, 95% CI −0.007, −0.0001) (coeff −0.003 95% CI −0.007, 0.001). Young people who were lower functioning were reported as exhibiting significantly more behavioral problems across every subscale when compared with those who were higher functioning.Behavior of young adults with Down syndrome improves over time but depressive symptoms and social relating behavior problems persist into adulthood. It is possible that those with persistent depressive symptoms are at a high risk for developing depressive illness in adulthood. Identifying young people with Down syndrome who are at risk for developing depression in adult life has implications for prevention and early treatment.

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.

“I have a good life”: the meaning of well-being from the perspective of young adults with Down syndrome

Abstract Purpose: The purposes of this study were to explore what makes for a “good life” from the perspective of young adults with Down syndrome and to identify the barriers and facilitators to participation. Methods: Twelve young adults with Down syndrome participated in individual and group discussions. Each session began with individual discussions between a researcher and participant, allowing each individual to express their views in their own words. Following individual discussions, participants joined a larger group facilitated by the researchers which allowed for collective reflection and sharing of experiences. Individual discussions were recorded on large poster size pieces of paper through drawings and writing using colourful pens by the participants themselves or with assistance from researchers. Group discussions were audio recorded and one researcher recorded field notes on contextual information. Data were analyzed through open coding and constant comparison techniques to identify categories which were then collapsed into the main themes. Results: Analysis of the transcripts revealed four main themes: “Relationships”, “Community participation”, “Independence” and “Hopes for the future”. These findings highlighted the participants’ desire for autonomy, particularly in the domains of living independently and employment. Family relationships and community services were described as both facilitators and barriers to their participation. Conclusion: Overall, the findings from this study revealed that the participants’ life perspective was positive, with a general consensus of, “I have a good life”. This study yielded many recommendations that could be integrated into transition models of service delivery for young adults with Down syndrome as they develop from adolescence into adulthood. Implications of Rehabilitation Young people with Down syndrome want to make decisions for themselves. Community participation is important for young adults with Down syndrome. Young people with Down syndrome have dreams and aspirations for their future, and should be fully engaged in planning for transition from school.

Day occupation is associated with psychopathology for adolescents and young adults with Down syndrome

BackgroundYoung adults with Down syndrome experience increased rates of emotional and behavioural problems compared with the general population. Most adolescents with Down syndrome living in Western Australia participate in sheltered employment as their main day occupation. Relationship between day occupation and changes in behaviour has not been examined. Therefore, the aim of this research was to explore any relationship between post school day occupations and changes in the young person’s behaviour.MethodsThe Down syndrome Needs Opinion Wishes database was used for case ascertainment of young adults aged 15 to 32 years with Down syndrome. Families of 118 young people in this population-based database completed questionnaires in 2004, 2009 and 2011. The questionnaires addressed both young person characteristics such as age, gender, presence of impairments, behaviour, functioning in activities of daily living, and family characteristics such as income and family functioning. Post-school day occupations in which the young people were participating included open and sheltered employment, training and day recreation programs. Change in behaviour of young adults who remained in the same post-school day occupation from 2009 to 2011 (n = 103) were examined in a linear regression model adjusting for confounding variables including age, gender, prior functioning and behaviour in 2004 and family income.ResultsIn comparison to those young adults attending open employment from 2009 to 2011, those attending day recreation programs were reported to experience worsening in behaviour both in the unadjusted (effect size −0.14, 95% CI −0.24, −0.05) and adjusted models (effect size −0.15, 95% CI −0.29, −0.01).ConclusionsWe found that the behaviour of those participating in open employment improved compared to those attending other day occupations. Further examination of the direction of this association is required.

Young people with intellectual disability transitioning to adulthood: Do behaviour trajectories differ in those with and without down syndrome?

Background Young people with intellectual disability exhibit substantial and persistent problem behaviours compared with their non-disabled peers. The aim of this study was to compare changes in emotional and behavioural problems for young people with intellectual disability with and without Down syndrome as they transition into adulthood in two different Australian cohorts. Methods Emotional and behavioural problems were measured over three time points using the Developmental Behaviour Checklist (DBC) for those with Down syndrome (n = 323 at wave one) and compared to those with intellectual disability of another cause (n = 466 at wave one). Outcome scores were modelled using random effects regression as linear functions of age, Down syndrome status, ability to speak and gender. Results DBC scores of those with Down syndrome were lower than those of people without Down syndrome indicating fewer behavioural problems on all scales except communication disturbance. For both groups disruptive, communication disturbance, anxiety and self-absorbed DBC subscales all declined on average over time. There were two important differences between changes in behaviours for these two cohorts. Depressive symptoms did not significantly decline for those with Down syndrome compared to those without Down syndrome. The trajectory of the social relating behaviours subscale differed between these two cohorts, where those with Down syndrome remained relatively steady and, for those with intellectual disability from another cause, the behaviours increased over time. Conclusions These results have implications for needed supports and opportunities for engagement in society to buffer against these emotional and behavioural challenges.

General practice encounters for young patients with autism spectrum disorder in Australia

This study compared the patient demographics and reasons for encounter in general practice for patients <25 years with and without an autism spectrum disorder identified as a reason for encounter and/or problem managed. The Bettering the Evaluation and Care of Health programme collected information about clinical activities in Australian general practice. Each year, the programme recruited a random sample of 1000 general practitioners, each of whom collected data for 100 consecutive consultations (encounters). Encounters with patients <25 years, where at least one autism spectrum disorder was recorded as a reason for encounter and/or a problem managed (n = 579), were compared with all other encounters (n = 281,473) from April 2000 to March 2014 inclusive. Data were age–sex standardised. Patients at autism spectrum disorder encounters (compared to non-autism spectrum disorder encounters) were more likely to be younger and male. There was a dramatic rise in the number of general practitioner consultations at autism spectrum disorder encounters from 2000 to 2013. More reasons for encounter were recorded at autism spectrum disorder encounters than at non-autism spectrum disorder encounters (156.4 (95% confidence interval: 144.0–168.8) and 140.5 (95% confidence interval: 140.0–141.0), respectively). At autism spectrum disorder (vs non-autism spectrum disorder) encounters, there were more psychological, general and unspecified, and social reasons for encounter and fewer preventive and acute health reasons for encounter. People with an autism spectrum disorder have complex health care needs that require a skilled general practice workforce.

Problems managed and medications prescribed during encounters with people with autism spectrum disorder in Australian general practice

Autism spectrum disorder is associated with high rates of co-occurring health conditions. While elevated prescription rates of psychotropic medications have been reported in the United Kingdom and the United States, there is a paucity of research investigating clinical and prescribing practices in Australia. This study describes the problems managed and medications prescribed by general practitioners in Australia during encounters where an autism spectrum disorder was recorded. Information was collected from 2000 to 2014 as part of the Bettering the Evaluation and Care of Health programme. Encounters where patients were aged less than 25 years and autism spectrum disorder was recorded as one of the reasons for encounter and/or problems managed (n = 579) were compared to all other Bettering the Evaluation and Care of Health programme encounters with patients aged less than 25 years (n = 281,473). At ‘autism spectrum disorder’ encounters, there was a significantly higher management rate of psychological problems, and significantly lower management rates of skin, respiratory and general/unspecified problems, than at ‘non-autism spectrum disorder’ encounters. The rate of psychological medication prescription was significantly higher at ‘autism spectrum disorder’ encounters than at ‘non-autism spectrum disorder’ encounters. The most common medications prescribed at ‘autism spectrum disorder’ encounters were antipsychotics and antidepressants. Primary healthcare providers need adequate support and training to identify and manage physical and mental health concerns among individuals with autism spectrum disorder.

Aging Well on the Autism Spectrum: An Examination of the Dominant Model of Successful Aging

There is a gap in our knowledge of aging with autism. The present study examined the applicability of the popular gerontology concept of “aging well” to autistic adults. Using survey data, a model of “aging well” was operationalised and applied to 92 autistic adults and 60 controls. A very small proportion (3.3%) of autistic adults were found to be aging well. Significantly less autistic adults were “maintaining physical and cognitive functioning” and “actively engaging with life” in comparison to controls. Whilst important differences in health and functioning status were found, the current dominant model of “aging well” is limited for examining autistic individuals. Suggested adjustments include development of a broader, more flexible and strengths -based model.