Grief and bereavement: perspectives, insights and experiences from people with disability

During 2016/17 Li-Ve Tasmania conducted inaugural research where Tasmanian’s with disability were asked to share their insights, perspectives and experiences regarding death and bereavement. Essentially, Tasmanians with disability asserted they feel confused, uninformed, isolated, and excluded from treatment planning, conversations about their prognosis, or opportunities to express their wishes or preferences for end of life care or post death arrangements. During the same research, families and community services for people with disability clearly identified a lack of confidence and lack of willingness to engage in the topic of death and dying. Respondents acknowledged avoiding the conversation with the people they support (with good intention), in an attempt to ‘protect’ the person with disability from getting ‘upset’ or complicating their experience of bereavement. Results clearly identified a need for a significant community cultural shift in order for the community service system to consistently and capably respond to the needs, wishes and preferences of people with disability (and those who support them) as they prepare for death and bereavement. This presentation summarises the research and outlines Li-Ve Tasmania’s response to the key learnings. In particular, it’s focus on community collaboration and capacity building which have already resulted in numerous, significant, sustainable changes within the Tasmania service system that will enhance the experiences for people with disability (and those who support them) as they prepare for, and experience death and bereavement.