Researchers from the Centre of Excellence for Behaviour Support are seeking participants for a study on the experiences of families who have relinquished the caring role for their family member with a disability, an area of need that has been rarely researched.
Centre Director Professor Karen Nankervis said the project aimed to provide a unique perspective on the issue of relinquishment to identify the supports that might make a difference to families.
“Caring for a child with high support needs as a result of having a disability can be a 24/7 responsibility, leaving many families emotionally and physically exhausted,” Professor Nankervis said.
“With limited supports and too little respite care available, many families feel there is no other option than to give up care of their child.
“Often, relinquishment is unexpected.
“Until an alternative full-time care arrangement can be found, the individual is typically cared for in a respite care facility, leading to care becoming unavailable to other families who use that service.
“By listening to the stories of families, we hope to gain an in-depth understanding of the factors that lead families to take this action, and the outcomes experienced by families after relinquishment occurs.
“We hope to use the findings of the research to create a set of practical recommendations that can be adopted to better support families caring for their family member with a disability.”
Participants need to be parents who have relinquished care of their family member with a disability within the past five years.
Four participation options will be available to participants:
(1) Face-to-face interview (only available in the locations of the investigators, metropolitan Victoria and Queensland);
(2) Telephone interview; available to participants in other States, rural or remote locations and if this is the preference of the participant;
(3) Paper questionnaire (available to all participants);or
(4) Online questionnaire (available to all participants).
Participants’ details will remain confidential.
To register your interest in taking part in the study or for more information, please contact Debra Carloss at the Centre on (07) 3381 1284 or by email [email protected]
About the Centre of Excellence for Behaviour Support
The Centre of Excellence for Behaviour Support focuses on improving the quality of life of adults with intellectual or cognitive disability and challenging behaviour, and to reduce the use of restrictive practices in the lives of these individuals.
The Centre conducts research to inform policy and best practice in behaviour support and provide direction, including policy frameworks and practice standards, across the disability services sector and other sectors. This work fosters the integration of theory and evidenced-based practice. The overall objective is to assist service providers to translate research into practice.
Media: For more information contact: Debra Carloss on ( 07) 3381 1284 or by email [email protected]