Current Research

• Optimising access for women with disabilities to mammography screening
• Pathways to sibling care-taking in families with an adult son or daughter with developmental disability and ageing parent-carers
• Increasing communication between parents and children with a disability using multisensory therapy

Project team
University of Sydney
Prof Gwynnyth Llewellyn
Assoc Prof Susan Balandin
Dr Ann Poulos
Dr Louella McCarthy
Leigha Dark

Overview
This study, funded by the National Breast Cancer Foundation, Kathleen Cuningham Research Grant, brings an innovative multidisciplinary perspective to the challenge of overcoming the barriers to mammography screening experienced by Australian women with disabilities. Blending the methodological insights from the health and social sciences with oral history, the study aims to determine the nature of the barriers for women with disabilities participating in mammography screening and to design strategies for overcoming them. BreastScreen NSW has endorsed this research project and is cooperating with the researchers to ensure the service is widely accessible.

Approach
The study has three phases to be undertaken over three years. Phase 1: Determining women’s experiences of mammography screening (in progress). In the first phase the project is conducting in-depth interviews, in a private and safe situation, to understand the breast screening experiences of women with disabilities. The semi-structured interviews are audio-taped, and seek to uncover the variety of women’s experiences of and responses to health care issues, and the ways these contribute to attitudes about mammography screening. Each interview transcript is uniquely coded to protect the confidentiality and anonymity of participants. Phase 2: Radiographic staff responses to the women’s data. Barriers to and facilitators of participation raised by the women will be presented to radiography and administrative staff from BreastScreen NSW brought together in focus groups in the second phase of the study. In these focus groups, radiographers will be given the opportunity to explore their own experience of these issues; to share difficulties encountered and solutions devised in a collegial and professional setting. Phase 3: In situ analyses of the screening environment. The third phase is the point at which the ideas and solutions proposed by the first two phases will be assessed. Using in situ analysis, women from phase 1 will be invited to attend an individualised mammographic screening session through BreastScreen NSW. Each participant will be accompanied by qualified research team members in order to analyse the nature and extent of the barriers in the screening environment.

Anticipated Outcomes
This study aims to deepen the understanding of the informational needs of women with disabilities regarding mammography screening and to identify gaps in the provision of mammography screening to these women. Achieving these aims will enable 1. development of workable solutions to the barriers women face in accessing breast screening 2. facilitate a greater awareness of the needs of women with disabilities by radiographic staff .

Related Links
BreastScreen NSW
BreastScreen NSW is a free breast screening service for women aged 50–69 years. This government funded service aims to detect breast cancer in its early stages, when treatment can be most effective.

BreastScreen NSW has a network of local services across NSW including 37 regional centres and 13 screening vans which continually tour and service remote areas and specific communities within NSW.

National Breast Cancer Foundation
In partnership with the Australian community the National Breast Cancer Foundation is leading the pursuit for new knowledge in the prevention, diagnosis and treatment of breast cancer.

Women With Disabilities Australia (WWDA)
WWDA is a national voice for the needs and rights of women with disabilities and a national force to improve the lives and life chances of women with disabilities.

Related Publications
Poulos, A., Balandin, S., Llewellyn, G., Dew, A. (2006). Women with cerebral palsy and breast screening by mammography. Archives of Physical Medicine and Rehabilitation, 87(2), 304-307.
Poulos, A., Gwynnyth L. (2005). Mammography discomfort: a holistic perspective derived from women's experiences. Radiography 11(1): 17-25.

Balandin, S., A. Dew, G. Llewellyn and H. Kendig (2003). Health care experiences of people with cerebral palsy and complex communication needs,. AGOSCI Something to Say, Sydney, AGOSCI.

Llewellyn, G., D. McConnell and R. Mayes (2003). Health of mothers with intellectual limitations, Australian and New Zealand Journal of Public Health 27: 17-19.

Llewellyn, G., S. Balandin , A. Poulos and A. Dew, 2003, Pilot survey of the 10 BreastScreen NSW Screening and Assessment Centres. Unpublished paper, available from Professor Gwynnyth Llewellyn, Faculty of Health Sciences, University of Sydney, Sydney.

Moreira, C., K. Svoboda, A. Poulos and R. Taylor (2002). Comparison of the Validity and Reliability of Two Image Classification Systems for the Assessment of Mammogram Quality.

Balandin, S. and J. Morgan (1997). Adults with cerebral palsy: What's happening? Journal of Intellectual & Developmental Disability 22(2): 109-124.

Pathways to sibling care-taking in families with an adult son or daughter with developmental disability and ageing parent-carers

Project team
Prof Gwynnyth Llewellyn
Assoc Prof Susan Balandin
Angela Dew

Background
In Australia, by far the majority of adults with developmental disabilities live in the family home accounting for around 240,000 people in Australia alone. Of these more than 11,000 currently live with their ageing parents. The parental generation is getting older and parental caregiving time becomes increasingly limited with advancing age. At the same time advances in technology, medical care and community support mean that adults with developmental disabilities have approximately the same life expectancy as their non-disabled peers. Very few adults with developmental disability are married and even fewer have children. Their friendship networks are typically limited to their parents’ friends or to others in a similar situation to themselves. Without the usual sources of spousal, offspring or peer support, adults with developmental disabilities are particularly vulnerable as older parent-carers age, become incapacitated or die.
Siblings are the logical ones to step forward to fill the gap left when their parents are no longer able to care for their adult son or daughter with developmental disability. There is considerable empirical evidence from North America and growing evidence from Australasia that this is what the majority of parents’ expect when asked how they view the future care of their son or daughter with a disability. Rarely however do ageing parent-carers talk about this expectation with their adult children or make concrete plans for this substitution of care to be realised. The few studies that have explored adult siblings’ perspectives on future care of their disabled brother or sister demonstrate that, at least in early adulthood, just less than half intend to play a primary care-taking role at some time in the future.
Given the high level of expectation by older parents and adult siblings of the latter’s future care-taking role and parents’ reported high levels of concern about what will happen to their son or daughter with developmental disabilities when they can no longer care for them, it is surprising that almost no attention has been given to understanding the sibling’s perspective. This project aims to fill this gap.

Aim
The overall aim of this project is to explore and understand the care-taking relationships of adult siblings in families with ageing parent-carers and an adult son or daughter with developmental disability. Specific objectives within this aim are to:

1. Describe variations in care relationships between adult siblings in families with an adult son or daughter with developmental disability and ageing parent-carers
2. Investigate patterns of continuity and discontinuity over time in adult siblings’ relationships with their brother or sister with developmental disability
3. Identify ways in which the care relationships between these adult siblings are influenced by: personal biographies, family expectations, birth order, gender, other siblings, existing care responsibilities, intensity of disabled sibling’s need for care, major life events, and personal support networks and health status.

Research design
The central research strategy is narrative life history. This is a qualitative technique, which is particularly well suited to understanding the lives of those whose experience departs from normative expectations. In-depth interviews employing this method allow participants to talk about their everyday lives by way of a narrative, which offers the opportunity to explore the life of the participant and to develop a detailed picture of the complexities and interactions between biography and life events.

Sample and recruitment
Inclusion criteria: English-speaking adult siblings of a brother or sister with developmental disability with parent-carers aged 60 plus. Adult siblings will be recruited utilizing disability and carer organizations contact lists, adults with developmental disabilities and older parent-carers who were participants in previous research studies and personal networks.

Procedure
The sibling participants will be interviewed in the setting of their own choice and at a mutually convenient time. The interviews will be conversational in nature and will explore the current and anticipated relationship between the sibling and their brother or sister with a disability.

Analysis
Analysis of the interviews will aim to:

1. Provide accounts of how adult siblings of a brother or sister with developmental disability understand their care-taking role
2. Identify patterns in caring biographies and the influence of these on adult siblings’ expectations of, and engagement with care-taking
3. Identify patterns in how adult siblings perceive their care-taking role and their prospective views on future care-taking

The analysis of the interviews will directly inform understanding of the ways in which the care relationships between adult siblings are influenced by personal biographies and adapt or are stressed by life events which is the subject of the final research objective.

Related publications
Dew, A., Llewellyn, G., & Balandin, S. (2004). Post-parental care: a new generation of sibling-carers. Journal of Intellectual and Developmental Disability, 29(2), 176-179.

Related links
Siblings Australia
Siblings Australia is a not-for-profit organisation recognizing and providing services for siblings of children with special needs.
www.siblingsaustralia.org.au

Related resources
Strohm, K. (2002) Siblings: Brothers and sisters of children with special needs. Kent Town SA: Wakefield Press

Funded by Apex

Project Team
University of Sydney
Assoc Prof Susan Balandin
Dr Patricia McCabe
David Trembath

Overview
Children with severe or multiple disability do not always use conventional communicative behaviours (e.g., words, signs) but may rely on other behaviours (e.g. vocalisations, eye gaze, changes in muscle tone or breathing rates) that can be interpreted as communicative. Verbal communication is an essential component of good quality of life, yet there are 25,290 children in Australia with multiple disability who have a severe or profound communication impairment. These children cannot communicate effectively with others including their families. Early communicative interactions provide children with opportunities to gain control over their environment and learn, however parents of children with severe intellectual and /or sensory disability often have difficulty recognizing and responding to their child’s communicative behaviours. This failure to respond impacts negatively on the parent child interaction. It also impedes the child’s ability to act on the environment and can result in learned helplessness, a failure to develop intentional communication and an impaired quality of life. In Australia, multi sensory environments are commonplace in schools and residences that provide services for clients with severe or profound disability. They are used to provide relaxation and induce a feeling of well-being for this group of Australians. In recent years there has been an increase in the use of multi sensory therapy techniques to reduce problem behaviours and improve clients’ well-being Yet there is a need to explore how these techniques impact on the interactions between children with intellectual disability and their carers and how improvements that occur in therapy can be generalized to other contexts.

1. examine the efficacy and feasibility of using multi sensory therapy techniques to increase these communicative acts between young children with severe/profound intellectual disability and their parents;
2. to establish preliminary data on the efficacy of multi sensory therapy techniques to increase parents' ability to recognise and respond to these acts.

Approach
The multi sensory equipment in the Communication Disorders Treatment and Research Clinic at the School of Communication Sciences and Disorders will be used to provide the multi sensory environment for treatment. As this study involves only a small number of participants, the multi sensory treatment program will be implemented with the first dyad, and base line data collection will continue with the other 4 dyads until a change in behaviour is recorded with dyad 1. Intervention will then commence with dyad 2 and, following the same method, with each subsequent dyad. Each parent will be trained to use the multi sensory equipment by a speech pathologist. Parents will be taught to recognize communicative acts using the therapy session video and information gained from the Affective Communication Assessment (ACA) (Coupe O'Kane & Goldbart, 1998).

Anticipated Outcomes
The need to explore how multi sensory therapy techniques impact on the interactions between children with disability and their carers, and how improvements that occur in therapy can be generalised to other contexts has been identified. Given the importance of visual stimuli in establishing early communication behaviours, there is potential for the use of multi sensory techniques in communication therapy with young children with severe/profound intellectual disability and their carers. However to date, the use of multi sensory therapy techniques and environments to develop communication has not been examined. This study will evaluate a multi sensory therapy program aimed at increasing the number of the children’s communicative acts and the parents’ ability to recognize and respond to these.