M. Vassos

Review: A systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours

BACKGROUND The quality of life (QOL) construct is proposed as a method to assess service outcomes for people utilising disability services. With this in mind, the aim of this study was to conduct a systematic review of available QOL measures for people with intellectual disability (ID) to pinpoint psychometrically sound measures that can be routinely used for service evaluation. METHOD A systematic search of the disability literature published between 1980 and 2008 was conducted in order to identify appropriate QOL tools for use within an Australian context. Twenty-four QOL instruments were identified and each instrument was then evaluated against a set of psychometric and measurement criteria. RESULTS Six of the instruments examined were deemed to be psychometrically sound on the available information. No instruments were found that specifically assess QOL for people with ID who exhibit challenging behaviour. Most of the instruments assess QOL from a subjective perspective, use a questionnaire format and measure only some (not all) of the eight theoretically accepted domains of QOL. CONCLUSIONS More instruments that measure QOL need to be developed and rigorously validated. This is especially the case for high-needs disability populations like those individuals that exhibit challenging behaviour or have severe to profound ID, as it is questionable whether existing measures can be used with these populations.

Investigating the importance of various individual, interpersonal, organisational and demographic variables when predicting job burnout in disability support workers.

Previous research has highlighted that factors such as large workload, role ambiguity, lack of support from colleagues, and challenging behaviour are associated with higher levels of burnout within the disability support worker (DSW) population. The aim of this research was to investigate which factors contribute the most to the prediction of the three facets of burnout--feeling exhausted and overextended by ones work (emotional exhaustion), detached and callous responses towards work (depersonalisation) and a lack of achievement and productivity within ones role (personal accomplishment). The factors chosen for analysis within this research were analysed within four categories linked to theories of burnout development (individual, interpersonal, organisational and demographic). A sample of 108 DSWs completed a questionnaire booklet that contained standardised measures of burnout and job stressors related to disability work. Results highlighted the importance of predictors such as challenging behaviour (interpersonal), workload (individual), supervisor support (individual), work-home conflict (individual), job feedback (individual), role ambiguity (organisational), low job status (organisational), role conflict (organisational), gender (demographic) and work hours (demographic) when predicting one or more of the facets of burnout. In conclusion, disability services and organisations may benefit from focusing on remodelling their staff-related organisational practices in order to prevent the development of burnout in their DSWs (e.g., increase supervision and support practices).

Work engagement and job burnout within the disability support worker population

The aim of this study was to explore work engagement and job burnout within the disability support worker (DSW) population, using the job demands-resources (JD-R) model as a guiding theory. The research measured a set of work-related demands and resources related to working within the disability sector in order to assess which demands/resources account for a significant portion of unique variance when used to model DSW engagement and burnout. This study sampled 258 DSWs from across Australia who completed an online or paper questionnaire that included measures of engagement, burnout and the demands/resources of interest. With regard to demands, role ambiguity was significantly associated with the three engagement scores and the three burnout scores. It also accounted for the most unique variance in the three engagement scores (vigour [VI], dedication [DE] and absorption [AB]), and the personal accomplishment (PA) burnout score. With regard to resources, job feedback was significantly associated with two of the engagement scores (VI and DE) and all three burnout scores. It accounted for the most unique variance in VI and DE, and PA. In conclusion, this research adds to the existing disability workforce literature as it represents one of the first comprehensive investigations of work engagement within this population. Improved job descriptions, on-the-job feedback and the creation of specialist support workers are offered as recommendations to improve the psychosocial health of DSWs.

An initial evaluation of a long-term, sustainable, integrated community-based physical activity program for adults with intellectual disability

Abstract Background Physical activity (PA) programs for adults with intellectual disability (ID) have positive impacts, at least in the short term. No research has been reported on the effect of long-term engagement in PA programs for adults with ID. This paper explores the physical and psychosocial benefits gained by two individuals with mild ID who participated in a long-term PA program. Method Accelerometery was used to collect PA data during the program and for 7-day periods outside of the program. To explore the psychosocial outcomes gained from participating in the program, participants and their caregivers were interviewed about their participation experiences. Results Across time, a decrease in the amount of light activity engaged in during sessions was found, with participants gradually increasing their moderate to vigorous activity. Psychosocial benefits, including meeting new people and gaining social acknowledgement were reported by participants and caregivers. Conclusions Long-term, sustainable, low cost PA programs (such as the one under investigation) can minimise barriers to physical activity for people with ID.

Can the job demand-control-(support) model predict disability support worker burnout and work engagement?

ABSTRACT Background Research shows that up to 43% of disability support workers (DSWs) report poor psychosocial work outcomes (e.g., stress, job burnout, low job satisfaction). This study examined whether the job demand-control-(support) model offers a valid explanation of DSW burnout and work engagement. Method 325 DSWs completed online measures of burnout, work engagement, workload, job control, and supervisor or colleague support. Results Significant three-way interactions between workload, control and colleague support were found for emotional exhaustion and personal accomplishment (burnout), and vigour (work engagement). High workload, low job control and low colleague support was related to higher burnout and lower work engagement, and high colleague support or job control reduced the impact of workload on these outcomes. Conclusions Given the promising findings in relation to the job demand-control-(support) model, organisations looking to enhance DSW wellbeing in the workplace should address issues around job control, workload and support in combination as opposed to separately.

Investigating relinquishment of care from the perspective of the family - Preliminary findings

Aim: This study investigated: (1) concurrent relationships between measures of family life and parental satisfaction with life in parents of an adult with Down syndrome and (2) influence of early family functioning on current parental satisfaction. Method: Sixty-two families were interviewed using a semi-structured interview, and responded to a series of questionnaires related to family functioning when their child with Down syndrome was between 7 and 15 years. Fifteen years later parents were asked to provide data on their current situation, including mental health, and satisfaction and difficulties with respect to care-giving in relation to their adult child. Results: Over half the families provided data to the second phase of the study. Life circumstances were appreciably worse for a small group of families than had been the case 15 years previously; however, these changes were generally unrelated to their parenting role. Overall, parents reported experiencing satisfaction from their care-giving role and did not report high levels of difficulties emanating from this role. Conclusions: Most parents demonstrated good levels of personal functioning, although there was a small group for whom this was not the case. Earlier functioning did not make a strong contribution to current levels of life satisfaction.

The outcome of a statewide audit of the quality of positive behaviour support plans

ABSTRACT Background Quality behaviour support plans (BSPs) are critical for achieving positive outcomes for people with intellectual disability who exhibit challenging behaviour. This study measured the quality of BSPs for technical accuracy and appropriate readability. Method Ten disability support organisations provided 139 BSPs for evaluation using the Behavior Support Plan Quality Evaluation (BSP-QE II; to assess technical accuracy) and Flesch readability scores (to assess readability). Results The mean BSP-QE II score (M = 6.53) classified the BSPs analysed as “weak.” Of interest, the elements of the BSPs that were subject to specific statutory regulation displayed greater quality. The readability scores indicated that plans were written using language that may not be understandable to typical direct support staff. Conclusions Poor quality BSPs, or those too complex to be readily understood, may not be implemented fully. Statutory regulation positively influences BSP quality; however, a more detailed focus on training and quality assurance is indicated.

Clinical governance: a relevant clinical practice framework to prevent the use of restrictive practices

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.

How do Australian disability support organisations describe the disability support worker position

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.

Assessing Attitudes Toward Evidence-Based Practices of Workers Supporting People With Disabilities: A Validation of the Evidence-Based Practice Attitudes Scale

This study conducted an initial psychometric validation of the Evidence-Based Practice Attitude Scales (EBPAS; Aarons, 2004 ) with a sample of workers employed in services that offer support to people with disabilities. Workers completed an online survey containing the EBPAS-GEN (a disability services version) and EBPAS-PBS (a version focused on positive behavior support, an evidence-based practice used in disability services). Confirmatory factor analysis, group differences, and internal consistency results support the psychometric soundness of both versions; however, the EBPAS-GEN shows slightly weaker properties. Evidence-based practice is gaining attention in the disability literature, and these findings add to this body of knowledge. These initial findings support the use of both versions of the EBPAS with populations of workers who work within disability services.