Understanding the psychosocial support needs of the mito community
Psychosocial support offered to participants of the mitoHOPE Program will be required throughout the entire program including beyond birth, members of the mito community have told the mitoHOPE team at the 2023 Mito Community Summit.
In October 2023, researchers from mitoHOPE’s consumer engagement team presented a consumer engagement workshop at the Mito Community Summit. Hosted by Mito Foundation, the annual summit is an opportunity for the mito community to come together, share their lived experiences of mito and shape Mito Foundation’s priorities and future direction.
The workshop aimed to understand the mito community’s experiences, knowledge and expectations of mitochondrial donation technology. Findings from this workshop have since been incorporated into the design of the mitoHOPE Program.
We spoke to several people from a diverse range of ages, backgrounds and experiences that were affected by mitochondrial disease.
The mito community offered the following key findings.
Information and support are both essential. The mito community require information that outlines the steps through and out of the clinical trials. Those attending the workshop expressed a desire for clear pathways into and out of the clinical trial and accounted for multiple likely scenarios. They also expressed a need for emotional support along the entire pathway.
Understanding participants as members of a group and a society. Workshop attendees told the team that they would like access to scripts. The scripts should assist them to tell their close relations what they were going through while involved in the trials. The details suggested by those we spoke to detailed: what the mitoHOPE Program is, when specific steps occur throughout the clinical pathways, how mitochondrial donation is completed, and (perhaps most importantly) why they are participating in these trials.
Beyond birth. Workshop attendees told the mitoHOPE team that they expect participants will feel particularly vulnerable once they exit the clinical trial following their child’s final check-in with the research team. Concerns at this point in time include access to health insurance and the support provided to both the parent and child born using mitochondrial technology.
Following the workshop, the mitoHOPE consumer engagement team has used these findings to inform the psychosocial supports that will be offered to participants before, during, and after the mitoHOPE clinical trial. These include:
- ensuring that information about a range of reproductive options is provided for those affected by mito
- ensuring that psychosocial support is available for participants through the various stages of participation
- regular consultation activities to ensure psychosocial supports are being met or how these supports require adjusting as the clinical trials progress.