Journal of Intellectual Disability Research
Scientific Oral Presentations
628 Psychological coping styles in mothers of children with rare genetic syndromes: Associations with mental health D. Adams (
[email protected])*, N. Jackson, E. Karakatsani & 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 problemfocussed 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. Aging with intellectual disability: A prevalence study of older people in Sweden G. Ahlström (
[email protected])*, M. Sandberg & N. Ng *Lund University, SWEDEN
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. Parents’ perspectives on stigma and IDD in Kinshasa H. Aldersey (
[email protected])*, S. Kavira, J. Kiasimbwa, W. Lokako, P. Miaka & L. Monte *Queen’s University, CANADA
Aim: Families of children with intellectual and developmental disabilities (IDD) in Kinshasa, Democratic Republic of the Congo (DRC) face significant stigma within their communities. This can lead to shame, blaming, and stress within the family and reduced opportunities for the child. This study used a participatory action research approach to understand this stigma and propose community action to reduce it.
Method: Congolese parents of children with IDD (trained in qualitative research methods and research ethics) conducted semi-structured interviews with individual family members of children with IDD in Kinshasa, the capital city of the DRC. Interviews were audio recorded and transcribed. The research team, inclusive of the family member researchers, adopted a grounded theory approach to analyse the interviews. Results: Results of this study demonstrate how stigma is felt and understood by family members in Kinshasa and identify coping or mitigation strategies employed by these families. Conclusions: This study provides a family-driven perspective on stigma and IDD in the DRC. Insight from this study may inform stigma reduction efforts in the DRC or in other similar contexts. Beyond show & tell: The state of on-the-job training for those with intellectual disabilities J. Alexander (june.alexander@flinders.edu.au)* *Flinders University, AUSTRALIA
Aim: To investigate the training that employees with intellectual disabilities (ID) are receiving from open employment and ADE (Australian Disability Enterprise) staff and the factors influencing that training. Method: 49 staff and 15 employees with ID from nine South Australian and New South Wales disability employment organisations participated in a mixed method study. Training staff completed an online questionnaire. Both groups were interviewed to obtain views and perceptions regarding the provision of on-the-job training. Results: Data revealed that there was a failure to match the tertiary qualifications of employees with ID, their workplace goals and on-thejob training. Training staff have a vast array of competing demands and challenges associated with their role. Conclusions: To assist disability employment staff in their training role, a multidimensional approach is required such as increasing staff knowledge of effective training strategies to increase skill acquisition for people with ID, government needs to be attentive to the policies that provide competing pressures on disability organisations, and management within organisations need to provide staff time and systems to support training of employees with disabilities. Who are we? Identity orientation and augmentative and alternative communication M. Allan (
[email protected])*, P. Frawley & S. Balandin *Deakin University, AUSTRALIA
Aim: Despite over 40 years in research and practice on the area of Augmentative and Alternative Communication (AAC), little attention has been paid to the issue of identity of the person who uses AAC. The aim of this paper is to give an overview of key themes found in the literature about identity and people who use AAC and to discuss why this is an important topic. Method: 15 databases and some grey literature were searched for research on identity and AAC. Results: The literature review identified a number of key themes that will be the key focus of a study with people who use AAC with a life-long disability. These themes include stigma, belonging and loneliness. Conclusions: Knowledge about AAC identity is important if we are to understand the steps that must be taken to support people who use AAC to manage a positive self-identity, to maintain a healthy outlook on life, and to be included in communities of their choice.
© 2016 MENCAP, the International Association for the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd
2016 IASSIDD World Congress
Scientific Oral Presentations
629 The voice of persons with intellectual disabilities about family quality of life R. Alveirinho Correia (
[email protected])* & M. J. Seabra-Santos *University of Coimbra & the Portuguese Association of Parents and Friends of Citizens with Mental Disabilities (APPACDM) of Castelo Branco, PORTUGAL
Aim: Research in the field of disability has typically omitted the voice of individuals with intellectual disabilities (ID), despite the acknowledgement that these individuals are the experts on their own experiences. Family quality of life (FQoL) has demonstrated a lot of potential in terms of evaluation and intervention with families of persons with ID. The aim of this work is to give voice to persons with ID and explore their perspectives about their family QoL. Method: For this purpose, four focus groups were conducted with 17 persons with ID (mild and moderate) 16 to 53 years old; nine women and eight men. The transcriptions were analysed with the NVivo software. Results: Family relationships emerged as the most important domain for the FQoL and some specificities in the older age group appeared. Conclusions: The inclusion of individuals with ID as informants in research is a way of highlighting the value of their point of view, empowering them and recognising the unique contribution that they are able to make to the research. Understanding neurodevelopment in very preterm children P. Anderson (
[email protected])* *Murdoch Childrens Research Institute & University of Melbourne, AUSTRALIA
Aim: Very preterm children have high rates of neurodevelopmental impairments, although the pattern of impairments varies. The Victorian Infant Brain Study (VIBeS) was designed to investigate brain injury and development in very preterm infants, with the intention of identifying neurological biomarkers for later impairments. Method: 224 infants born
