Quality of life in adolescents with a disability and their parents: the mediating role of social support and resilience

The aim of this study was to test whether the effect of the pile-up of demands associated with a disability on quality of life, was mediated by resilience, quantity and quality of social support for adolescents with a disability and their parents. One hundred and thirty two parents, 90 mothers and 42 fathers and 111 adolescents, aged between 16 and 24 years completed measures of the pile-up of demands, social support, resilience and quality of life. Structural equation modeling with the bootstrap resampling method showed that the impact of the disability of their son/daughter on the quality of life of the parents was fully mediated through the parents' resilience and the quantity of social support and that resilience, however only partly, mediates the effect of adaptive skills on the quality of life of the adolescents with a disability. Limitations of the study and clinical implications are discussed

Quality of life for caregivers of a child aged 6-16 years with Autistic Spectrum Disorder and/or an intellectual disability : a comparative study : a thesis presented in fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Turitea, New Zealand

Quality of life for caregivers of children with autistic spectrum disorder and/or an intellectual disability was compared to quality of life for those caring for a normally developing child. Participants were caregivers of children between 6 - 16 years of age who were divided into two groups: Caregivers of disabled children (Group 1, n = 60) and caregivers of normally developing children (Group 2, n = 13). The research investigated differences of overall quality of life between groups. Within Group One the influence on quality of life for caregivers was investigated in relation to the child's behaviour, level of support the child requires to complete activities of daily living, caregivers marital status, caregivers socio-economic level, and caregivers satisfaction with perceived supports. The Quality of Life Index and the Nisonger Child Behavior Rating Form were used to determine quality of life and problem behaviours. Results showed a difference in overall quality of life between groups. Child's behaviour was found to have a significant relationship with caregiver‘s quality of life. Satisfaction with perceived supports had a weak relationship to caregiver‘s quality of life. No statistically significant relationship was found between caregiver‘s quality of life and the child's activities of daily living requirements, caregiver‘s marital status or caregiver‘s socio-economic status. Quality of life for caregivers of developmentally disabled children was shown to be lower than the general population. New Zealand is currently in a state of flux in regards to addressing and refining disability support services. Research that further investigates these results may enhance service delivery and result in better outcomes for those supporting children with a disability

Assessing individual support needs to enhance personal outcomes

Education and human service organizations providing services to people with intellectual and closely related developmental disabilities are increasingly being impacted by the supports paradigm, the quality of life concept, and the evaluation of personal outcomes. In this article the authors discuss the relationship among these three areas, including examples that illustrate how assessed support needs data can be aligned with quality-of-life-related core domains so as to establish individualized support systems that enhance personal outcomes. The article concludes with a discussion of the implications for educators and habilitation professionals of integrating the supports paradigm, the quality of life concept, and the evaluation of personal outcomes

Examination of parental and special education teachers' attitudes towards sports activities of students with intellectual disability

The purpose of this study was to examine the attitudes of parents of students with intellectual disability and special education teachers working in special education schools to the sports activities of students with intellectual disability (ID).The study included 92 volunteer teachers who worked in special education schools, and 116 voluntary parents of children with ID who attended special education schools. The "Attitude Towards Sports Activities of Intellectually Disabled Individuals Scale" was used by participants to determine their attitudes towards the participation of students with intellectual disabilities. The total scale scores of the teachers and the parents were 100.39 ± 9.41 and 117.00 ± 15.47, respectively. When the scale scores of the teachers and the parents were compared, there was a statistically significant difference in favor of the parents (p = 0.000). The results of this study have shown that special education teachers and parents of students with intellectual disabilities have positive attitudes towards their participation in sports activities. The attitudes of the parents were found to be more positive than those of the special special education teachers. © 2018 by authors, all rights reserved

Achieving Quality: Consumer Involvement in Quality Evaluation of Services

[Excerpt] The aim of this paper is to raise awareness of the fact that changes in the approach towards the “clients” or “consumers” of services for people with intellectual disability do have an important impact on the way the quality evaluation systems of these services should be designed and organised

Development for all 2015-2020: strategy for strengthening disability-inclusive development in Australia’s aid program

Disability-inclusive development is a priority for Australia’s international engagement. This strategy – Development for All 2015-2020: Strategy for strengthening disability-inclusive development in Australia’s aid program – responds to the agenda set out in DFAT’s development policy, and aims to promote improved quality of life of people with disabilities in developing countries. Ministerial foreword The Australian Government is committed to playing a leadership role internationally in disability-inclusive development to enable people with disabilities in developing countries to find pathways out of poverty and realise their full potential. Our development policy, Australian aid: promoting prosperity, reducing poverty, enhancing stability, confirms Australia’s commitment to expanding opportunities for people, businesses and communities as key to promoting economic growth and reducing poverty. It recognises that everyone is affected if the most disadvantaged people are left behind, and acknowledges that people with disabilities make up the largest and most disadvantaged minority in the world (comprising 1 in 7 of the global population). The Australian aid policy outlines our continuing commitment to including people with disabilities as participants in and beneficiaries of our aid program. Aid alone cannot solve development problems. Our partner governments need to lead in expanding opportunities for people with disabilities by developing and implementing strong policy and legislative frameworks and improving service delivery. And we recognise we need to tap into ideas from a wider range of sources, including the private sector, and leverage new kinds of partnerships. This new strategy—Development for All 2015–2020: Strategy for strengthening disability-inclusive development in Australia’s aid program—builds on experience in implementing the Australian Government’s first strategy for disability-inclusive development1, which helped establish Australia as a strong voice globally in this area. This strategy sets out how the Australian Government—in particular, the Department of Foreign Affairs and Trade (DFAT)—will strengthen its impact in promoting disability-inclusive development beyond 2015, with a particular focus on our region, the Indo-Pacific. Australia’s international advocacy, diplomatic efforts, and aid program investments will continue to make a major contribution to improving the quality of life for people with disabilities in developing countries with the objective that our development efforts leave no one behind

A pilot survey of physical activity in men with an intellectual disability

People with intellectual disability are reported as a sedentary population with increased risks of poor health due to an inactive and sedentary lifestyle. As the benefits of physical activity are acknowledged, measuring physical activity accurately is important to help identify reasons for low and high physical activity in order to assist and maintain recommended levels for optimal health. This paper reports a pilot study undertaken to validate the use of a physical activity monitor (Sensewear Armband) and the International Physical Activity Questionnaire (IPAQ) as instruments for measuring and exploring physical activity of men with intellectual disability. The design was a one group descriptive study and data were collected over a 7 day period from 17 men. The Sensewear Armband enabled continuous and long-term measurement of 14 objective physical activity metrics. The IPAQ examined details of physical activity reported over the 7 days. Equivalent results were found in both instruments indicating a positive correlation between the Sensewear Armband and the IPAQ. The results show 50% have low activity levels and the national recommended physical activity levels been achieved at a very low active intensity. No sustainable high physical activity intensity levels were recorded. The results confirmed the Sensewear Armband and the IPAQ as a practical means of measuring and understanding physical activity levels of men with intellectual disability

Disability support services strategic plan 2014 to 2018

The Ministry of Health’s Disability Support Services (DSS) group has developed a four-year Strategic Plan for 2014 to 2018. Summary The plan sets out the vision for Disability Support Services – that disabled people and their families are supported to live the lives they choose – along with some guiding principles that informed the development of the plan. Context for the plan’s development is outlined, including: the strategies and commitments that guided its development information on disability support in New Zealand demographic analysis. It also includes an action plan for the Disability Support Services group. One of the priority areas contained in the plan is the implementation of the Putting People First quality review. The plan was developed with input and guidance from stakeholders to ensure it reflects a shared direction and commitment to the vision and related activities

Physical activity intervention for elderly patients with reduced physical performance after acute coronary syndrome (HULK study): Rationale and design of a randomized clinical trial

Background: Reduced physical performance and impaired mobility are common in elderly patients after acute coronary syndrome (ACS) and they represent independent risk factors for disability, morbidity, hospital readmission and mortality. Regular physical exercise represents a means for improving functional capacity. Nevertheless, its clinical benefit has been less investigated in elderly patients in the early phase after ACS. The HULK trial aims to investigate the clinical benefit of an early, tailored low-cost physical activity intervention in comparison to standard of care in elderly ACS patients with reduced physical performance. Design: HULK is an investigator-initiated, prospective multicenter randomized controlled trial (NCT03021044). After successful management of the ACS acute phase and uneventful first 1 month, elderly (≥70 years) patients showing reduced physical performance are randomized (1:1 ratio) to either standard of care or physical activity intervention. Reduced physical performance is defined as a short physical performance battery (SPPB) score of 4-9. The early, tailored, low-cost physical intervention includes 4 sessions of physical activity with a supervisor and an home-based program of physical exercise. The chosen primary endpoint is the 6-month SPPB value. Secondary endpoints briefly include quality of life, on-treatment platelet reactivity, some laboratory data and clinical adverse events. To demonstrate an increase of at least one SPPB point in the experimental arm, a sample size of 226 patients is needed. Conclusions: The HULK study will test the hypothesis that an early, tailored low-cost physical activity intervention improves physical performance, quality of life, frailty status and outcome in elderly ACS patients with reduced physical performance

Quality of life of people with mild intellectual disability

Não é prática comum dar voz a pessoas com deficiência, mesmo quando se trata da investigação de sua própria qualidade de vida. Assim, este estudo teve por objetivo conhecer a opinião de 15 adultos com deficiência mental leve em relação a sua qualidade de vida e a opinião de seus cuidadores também a esse respeito, por meio de um instrumento que avalia a qualidade de vida (WHOQOL-Bref). Os dados foram analisados estatisticamente e comparados. Os resultados mostram que a diferença entre as avaliações foi pequena nas questões referentes à satisfação com os domínios físico, psicológico, das relações sociais e do meio ambiente. A avaliação feita pelas pessoas com deficiência foi apenas ligeiramente superior àquela feita por seus cuidadores. Não houve diferença estatisticamente significativa entre as avaliações, do que se conclui que as pessoas com deficiência mental são capazes de falar de suas próprias vidas de maneira positiva e bastante realista.People with intellectual disability are often neglected even though it is a question of their own quality of life. Thus, this study aimed to know the opinion of 15 adults with mild intellectual disability related to their quality of life and the opinion of their caregivers about it with an instrument that evaluates quality of life (WHOQOL-Bref). The data were statistically analyzed and compared. The results show that the difference between the evaluations was small in the questions concerning satisfaction with the physical, psychological, social relation and environment welfares. People with disability' evaluation was few higher than their caregiver's evaluation. There weren't significant statistics difference between evaluations, so that we conclude that the people with intellectual disability are able to talk about their own lives with an optimistic view and a very realistic way