K. Nankervis

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.

Sexuality, pregnancy and midwifery care for women with intellectual disabilities: A pilot study on attitudes of university students

Abstract Women with intellectual disability have historically not been provided the opportunity to become mothers. Attitudes held by future professionals will determine the level and quality of support these women are provided. This study was designed to evaluate and compare the attitudes of students from Education, Disability and Midwifery towards the sexuality and parenting of people with an intellectual disability, and to further examine the attitudes held by Midwifery students following a lecture strategy. A questionnaire assessing attitudes towards the sexuality and parenting of people with intellectual disability was implemented and contained the themes of marriage, parenting, sexual intercourse and sterilization. Significant differences were found between student groups on the themes of sterilization and parenting, with further analysis indicating that Disability students held significantly more positive attitudes than the other two groups. Students reported less positive attitudes towards parenting than marriage, sterilization and sexual intercourse. Respondents’ age was significantly associated with their attitudes on parenting, indicating that older students held more conservative attitudes towards the ability of people with an intellectual disability to parent. In addition, this research indicated that the attitudes of Midwifery students became more positive following a lecture delivered after the questionnaire.

Stolen voices: Facilitated communication is an abuse of human rights

Abstract Despite the overwhelming research evidence discrediting the validity of Facilitated Communication (FC), Lilienfeld, Marshall, Todd and Shane (2015) have demonstrated that the use of FC is still prevalent in disability service and educational settings. They have comprehensively examined the persistence of FC, provided reasons for its persistence, and formulated key recommendations to address the insidious spread of FC. We concur with Lilienfeld et al. as depressing as it may be, particularly regarding the continued use of FC by clinicians, educators and researchers. Drawing upon our experience as practitioners in the field of intellectual and developmental disability, we offer the view that it is important to argue against FC from a human rights perspective using the United Nations Convention on the Rights of Persons with Disabilities (2006). Put simply, FC is an abuse of human rights.

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.

Training outcomes in positive behaviour supports

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.