Research to Practice
For people with brain injury, sexuality remain as a secondary focus in post injury rehabilitation, and relationships are inadequately acknowledged as an important component of a fulfilling life. In 2018, SL&RR partnered with Synapse Australia to create a Sexual Lives & Respectful Relationships program for people with brain injury (SL&RR:BI). This program began when a Synapse staff members attended a SL&RR information session in 2017, connected with the SL&RR mission and values and questioned how the program could be applicable for people with brain injury. From here, a research project to develop and pilot SL&RR:BI program was funded by an NDIS ILC grant.
In 2018, with approval from the Deakin University Human Research Ethics Committee, Amie O’Shea led a project, which was advised by a Research Advisory Committee, to gather 8 new stories from people with brain injury about relationships and sexuality in their lives. A team of researchers including Patsie Frawley and Monica Wellington collected these stories from people across Australia, in a similar process as the original SL&RR stories. The suite of stories include: Georgina, Julie, Chris, David, Emmet, Mac, Selma and Soraya. These stories were translated into film by Caleb Rixon from Genyus Network. People who identify as having a brain injury were invited to be actors in the videos. Key messages from these stories and the SL&RR:BI program manual were developed by a team including Deakin Researchers and people with brain injury.
The SL&RR synapse site, consisting of 3 Peer Educators and 3 Program Partners completed their training in 2019 by a team including Amie O’Shea, Rhys Nagas, Linda Stokoe and Monica Wellington. In addition to the 8 new stories, the site was trained on some of the long-time favourite SL&RR activities, such as the Rights cards & ‘When sex is not OK’, as well as some new activities such as ‘Reaching in, reaching out’, ‘BeyondBlue LGTBIQA+ real life stories’, and ‘Tips for a health Headspace’ factsheet.
The site delivered a program in July/August 2019, and as this was a pilot, feedback from the site and the participants was used to develop the manual into the published version.
Sharing our knowledge
- Amie O’Shea and Danny Li shared their experience and learnings at the 2019 Australian Social Policy Conference in Sydney. Amie was awarded the Conference’s annual Early Career Researcher award
- The Deakin research team has submitted a paper to the Sexuality and Disability Journal about this project and sexuality rights for people with brain injury.
- Monica Wellington and SL&RR:BI Peer Educators have submitted an abstract to present at the 2020 Virtual Disability Conference on sexuality rights for people with brain injury.
With ongoing support from the Deakin team, the Synapse site will continue to run the SL&RR:BI programs in Sydney.
The new content has amplified the depth of the SL&RR program. With this, SL&RR will continue to lead the work of sexuality rights and education for people with Intellectual Disability and Brian Injury in Australia.
In 2018 Deakin partnered with Inclusion Melbourne on a grant from the Gay and Lesbian Foundation of Australia (GALFA). The grant was to focus on LGBTIQ (lesbian, gay, bisexual, trans, intersex and queer) people with intellectual disability, and the Deakin role was to create and trial a version of the SL&RR program specifically for LGBTIQ people with intellectual disability. We knew this would be a useful learning opportunity, based on evaluations from SL&RR sites which had pointed to increasing the diversity and representation in the program.
In 2018, with approval from the Deakin University Human Research Ethics committee, Deakin researcher Amie O’Shea gathered stories from LGBTIQ people with intellectual disability to use in the pilot program. The stories were collected in the same way as the original SL&RR stories. Carol and Johnno’s stories were added to existing stories from Angela and Hussein (these are all pseudonyms) and key messages were developed with a team including SL&RR Peer Educators and Program Partners as well as Deakin SL&RR researchers.
The program was delivered by a trained SL&RR Peer Educator and Program Partner, with Amie O’Shea (Deakin). Ten LGBTIQ people with intellectual disability came to the program which ran for four sessions. Aside from the two new stories, most of the other SL&RR program activities (like the rights cards, the relationship cards) remained the same. In place of the ‘Outing Disability’ activity we asked participants what they would like to do, and they decided on a session on safe sex. Amie invited Tex from Thorne Harbour Health to speak to the group, as part of their public health awareness work. This session was very well reviewed in the evaluation, with participants rating it positively.
As the program was a pilot we used the feedback and discussions by the group about the stories to further develop the key messages and revise these in the program for when it is run in the future.
The LGBTIQ pilot SL&RR program was evaluated by an independent researcher from the University of Melbourne, Dr Genee Marks. Genee observed the program delivery and spoke with some participants and the trainers to produce her evaluation report. The report is available on the ‘research and resources’ section of our website. Some of the key findings included:
- Opportunities for increasing the involvement of sexually and gender diverse Peer Educators and Program Partner organisations in SL&RR networks
- The option for activities that include the chance to get up and move around
- Identifying ways for the group to stay in contact after the program has finished
The SL&RR team led by Amie O’Shea held four debriefing sessions to reflect on the program delivery. Some of their reflections and ideas were captured in the evaluation report, and included:
- It was important to have LGBTIQ trainers, as another way for participants to connect with their peers
- We would like to have the new stories produced on video for ease of access
- The training team was a strong group who were able to communicate well and work effectively together. We would suggest four trainers where possible.
Findings from the evaluation and the trainers reflections have been built in to the SL&RR program going forward.
Sharing our knowledge
- Amie O’Shea and Sarina Rakidzic have shared what we learned from the pilot program at a number of events in 2018 including: the Queer Legacies, New Solidarities conference (Melbourne, November 2018), the Australian Gay & Lesbian Multicultural conference (Melbourne, October 2018) and Australasian Society for Intellectual Disability conference (Gold Coast, November 2018).
- The SL&RR team at Deakin have built ongoing connections with the NDIS LGBTIQA+ strategy, the Out Together project at Wellways for LGBTIQ people with disability, and the Department of Education regarding sexuality and intellectual disability in schools.
- Amie O’Shea (Deakin) and Nathan Despott (Inclusion Melbourne) wrote about the project in Intellectual Disability Australasia, the magazine for members of the Australasian Society for Intellectual Disability.
- Two of the pilot program participants attended and presented with Amie at a professional development day for disability service staff on LGBTIQ people with intellectual disability in Melbourne.
- The SL&RR team (Peer Educators, Program Partners and the Deakin University SL&RR team) will review the Melbourne University evaluation and what was learned from the LGBTIQ pilot to inform the way this program is used within the broader SL&RR program. This will include making sure the manual, the program and the training continues to include and respect all genders, sexualities and relationship choices, and how best to include the new stories into the SL&RR program.
- The stories will be read onto video by actors who are also LGBTIQ people with intellectual disability.
- The new stories and the updated content will be ready for the SL&RR central training in May 2019, and shared with existing SL&RR sites at the same time.
- We are working with SL&RR Program Partner Organisation Family Planning NSW to offer the LGBTIQ-specific program in Sydney in 2019.
- The evaluation identified that a number of the people who came to the program wanted to go on to be involved in SL&RR or other opportunities to share their experiences. The SL&RR program team has committed to connect them with local SL&RR networks and researchers, and other advocacy groups such as Rainbow Rights where people can stay in touch and meet others. You may have already seen some new faces popping up!
- Amie is working with the University of Melbourne to write an academic journal article on the program evaluation.
- Amie and Patsie have applied to present at the 2019 IASSID (International Association for the Scientific Study of Intellectual Disability) conference in Glasgow, Scotland, and we will also present on the project at the Deakin Sexuality and Intellectual Disability masterclass in March, 2019.
- Amie has been invited to the first conference of the Swedish SL&RR program (called VIP:RR) and will give a presentation on the LGBTIQ pilot program at Malarden University in Sweden.