New grant to explore end of life priorities of people with a learning disability

The ‘Voices of Underserved Communities in Palliative Care’ report highlighted that not a lot is known about what people with learning (intellectual) disabilities want from end of life care. A Health Research Council Activation Grant has provided an opportunity to explore this more, so that we can then plan future research that will meet the needs and priorities of this community. 

Hamish Taverner, a lived experience advisor, will work alongside Nic McKenzie to plan and implement an accessible approach to focus groups and interviews, so that people with learning disability can share their perspectives.  Nic and Hamish will be supported by the Jacqui Robinson, Merryn Gott, and Wendy English, as well as Henrietta Trip from University of Otago. 

The team are really looking forward to building relationships with people with a learning disability, and the professionals who support them across end of life care and disability services.  We are particularly excited about working with our partner, Te Roopu Taurima, a kaupapa Māori disability service, to make sure that the views of tāngata whaikaha and whānau are heard and understood. 

We will look forward to reporting back to you later in the year. 

The project is led by Dr Nicola McKenzie who has recently joined Te Ārai as a Research Fellow.