Sonya Girdler

Young adults with intellectual disability transitioning from school to post-school: A literature review framed within the ICF

Purpose: The purpose of this review was to describe literature relating to transition for young people with an intellectual disability and identify gaps within the current knowledge base. Method: A narrative literature review was undertaken. Searches of databases Medline, CINAHL, PsycINFO, ERIC, ISI Web of Science and ProQuest 500 International provided relevant research articles. The search terms used were intellectual disability, transition, employment, and ICF as well as other terms derived from the ICF. Manual searches of reference lists identified additional studies. Furthermore, government websites were searched for relevant reports and policies. Results: Transition literature was explored by ICF domains; body functions and structures, activity and participation and contextual factors. Studies were identified in some but not all areas and included literature describing self-determination and participation in leisure activities for those with mild intellectual disability. However, significant gaps were found particularly for those with severe intellectual disability. Conclusions: The ICF is a useful tool in framing a review of transition literature for young people with intellectual disability due to the complexity and multi-faceted nature of transition. The important influence of environmental factors including family systems, post-school services and access to transport were highlighted as having considerable impacts on transition outcomes. Implications for Rehabilitation The ICF is a useful tool in framing transition research to identify gaps. The current body of literature in transition from school for young adults with intellectual disabilities is too singularly focused and rarely considers those with moderate to severe intellectual disability. There has been little research on this topic in low and middle income countries. The scale of the impact of environmental factors on young people transitioning from school to post-school is currently under-represented. A holistic approach to post-school outcomes needs to be undertaken in future research.

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 Organisations 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 childs functional ability, behavioural issues and parents 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.

Self-management education programs for age-related macular degeneration: A systematic review

Objective:  To review the effectiveness of education programs to improve emotional status, daily living and self‐efficacy in adults older than 60 years with age‐related macular degeneration (AMD).

Variation over time in medical conditions and health service utilization of children with down syndrome

OBJECTIVES To compare the prevalence of parent reported medical conditions and rates of health service utilization in school-aged children with Down syndrome in Western Australia in 1997 and 2004. STUDY DESIGN We compared two cross-sectional surveys completed by parents of children with Down syndrome identified from population-based sources in 1997 (n = 210) and 2004 (n = 208). Surveys collected information on family demographics, medical conditions, health issues, and service utilization. The analysis described medical conditions in 2004 and compared frequencies in both years. Regression analyses compared medical conditions and health utilisation in the two cohorts. RESULTS In 2004, children with Down syndrome had greater odds of having a bowel condition (OR, 1.69; 95%, 1.16 to 2.45; P = .01), were less likely to have a current problem due to their cardiac condition (OR, 0.32; 95% CI, 0.15 to 0.68, P = .003), and demonstrated an overall reduction in episodic illnesses and infections. The use of GP services (incidence rate ratio [IRR] = 0.91; 95% CI, 0.83 to 1.00, P = .05) and combined medical specialist visits (IRR = 0.92; 95% CI, 0.84 to 1.01; P = .09) were reduced in 2004, as were overnight hospital admissions (IRR = 0.60; 95% CI, 0.37 to 0.96; P = .03) and length of stay (IRR = 0.33; 95% CI, 0.24 to 0.44; P < .001). CONCLUSIONS The health status of children with Down syndrome has varied over time with reductions in current cardiac problems, episodic illnesses, and health service use. Research is now needed to investigate the impact of these changes on the overall health and quality of life of children and families living with Down syndrome.

Self-Management Education Programs for People Living with HIV/AIDS: A Systematic Review

The effectiveness of self-management programs to improve physical, psychosocial, health knowledge, and behavioral outcomes for adults living with HIV has not been well established. This article reviews the effectiveness of self-management education programs to improve physical, psychosocial, health knowledge, and behavior outcomes for adults living with HIV/AIDS. A systematic review of English articles using CINAHL, MEDLINE, and PsycINFO were used to identify and retrieve relevant studies. Each database was searched from its earliest record to October 2010. Search terms included HIV/AIDS, self-management, self-care, patient education, and education programs. Only studies that (1) reported on a HIV-specific intervention that aimed to increase participants HIV-related knowledge through a self-management component, (2) included a control group, (3) provided skills training or targeted behavior change, and (4) reported clinical outcomes were included. Independent data extraction by one author using the methods described in the Cochrane Handbook for Systematic Reviews. A second reviewer checked the data extraction. Six protocols were reported in eight publications (n=1178), all contained elements of self-management interventions. Effect size calculations were not conducted due to limitations in the available data. The review found randomized controlled trials (RCT) evidence sufficient to infer that self-management programs for people living with HIV/AIDS result in short-term improvements in physical, psychosocial, and health knowledge and behavioral outcomes. Statistically significant improvements were reported for intervention participants compared to control participants across most outcomes. There is insufficient evidence to provide conclusions regarding the long-term outcomes of HIV-specific self-management interventions.

It's not what you were expecting, but it's still a beautiful journey: the experience of mothers of children with Down syndrome.

Aim: The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome and to explore what if any was the role of spirituality and organized religion in this experience. Method: A homogenous sample of eight mothers of children between 7 and 12 years of age with Down syndrome was recruited through a population-based source of families of children with Down syndrome in Western Australia. In-depth interviews were used to explore the mother’s experience of parenting and to examine the role of spirituality and organized religion in their personal experience of mothering. Results: In this study, stressful life events recounted by the mothers included initial acceptance, developmental behaviour of the child, functionality of the child, health conditions and financial stress. Overall spirituality was described as a stronger and more dynamic source of support than organized religion in coping with stressors and life’s challenges associated with raising a child with Down syndrome. Conclusion: Findings from this study revealed that being a mother to a child with Down syndrome can best be described as a mosaic of experiences, emotions and a journey of self growth. Both spirituality and organized religion to a greater or lesser extent were useful in mediating stress and supporting mothers particularly during challenging life events in the course of their journey with their child with Down syndrome. Implications for Rehabilitation Being a mother to a child with Down syndrome has been described as a mosaic of experiences and emotions including a journey of self growth. The birth and diagnosis of a child with Down syndrome are most difficult and stressful experience for a mother. Supports such as family, friends, spirituality and religion can play a key role in helping mothers of children with Down syndrome cope. Health care providers need to understand the significance of holistic support systems for families with a child with Down syndrome.

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.

A comparison of activity, participation and quality of life in children with and without spastic diplegia cerebral palsy

Purpose: To measure activity, participation and QoL in children with CP and to determine how these differ from a comparable group of typically developing (TD) children.Method: A total of eleven males and eight females with CP ranging in age from 5 to 12 years (mean age 7 years 10 months, SD 1 year 10 months; GMFCS level I–II) and 19 age and sex matched TD peers were recruited. Activity was measured using Paediatric Activity Card Sort (PACS), 6-Minute Walk Test and Timed Up and Go Test (TUG). Participation was measured using the assessment of Life Habits (LIFE-H) and quality of life was measured using the Cerebral Palsy Quality of Life Questionnaire (CP-QoL).Results: TD children performed more activities of personal care than children with CP, as assessed via the PACS, t(40) = 3.266, p = 0.002. TD children participate in more life habits than children with CP across all the LIFE-H domains except that of relationships. Results from the CP-QoL indicate that TD children experience a greater QoL in the domains of functioning, t(40) = 2.824, p = 0.007, and participation and physical health, t(40) = 3.543, p = 0.001, than children with CP.Conclusions: These findings encourage the development of therapeutic interventions that aim to reduce these imbalances at all levels of the International Classification of Functioning, Disability and Health. Implications for Rehabilitation This paper offers a comprehensive approach to assessment of children with cerebral palsy using the ICF framework. It offers insight into the significant differences that children with mild to moderate CP experience when compared to their typically developing peers and identifies key areas to direct interventions.

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.

Vision self-management for older adults: A pilot study

Purpose. The aim of this study was to pilot test the vision self-management programme (VSM) a newly developed, 8-week self-management intervention. The programme is a structured, repeatable and theoretically derived programme for older adults with age-related vision loss (ARVL). Method. A pre-and post-test design was used, and involved 12 older adults with ARVL. The activity card sort, a measure of participation in life situations, was the primary outcome measure. Secondary outcome measures examining general health and vision specific domains were also used. Results. Participants reported a statistically significant increase in participation in life situations immediately following the VSM programme. However, whilst an increase in such participation was still present at 12-week follow-up, this was no longer statistically significant. In addition, the participants demonstrated statistically significant gains in both general health and vision specific domains. Although these findings are exploratory they suggest that the VSM may have both short and longer term benefits for older adults living with ARVL. Conclusions. Overall findings indicate that the participation in the self-management programme resulted in improved participation and health outcomes and support the need for further study using more rigorous designs.