Parental Mental Health Trends Project

The Developmental Pathways Project: Trends in pre-existing mental health disorders among parents of infants born in Western Australia from 1990 to 2005

Researcher perspective: Melissa O’Donnell, NHMRC Early Career Research Fellow

Consumer perspective: Margaret Cook, independent mental health consumer

Background

The Parental Mental Health Trends Project, which is part of the Developmental Pathways Project, aims to determine the prevalence of prior and current mental health disorders in parents, including trends over time.

From the researcher - Melissa O’Donnell

Why did you want to involve consumers or community members in this project?

My research is in a very sensitive area of parental mental health and risk for child abuse and neglect. I felt it was important in my research to ensure that I included the concerns and voices of community members who had personal experiences and knowledge, which could enrich the quantitative research that I was doing.

Did you put anything in place before you started?

My research is part of a larger research project which has a community reference group that has senior level support and a budget for participation activities.

At what stages did you decide to involve consumers or community members and why?

In our broader research project we have involved community members from the beginning in developing our research plan, presentation of preliminary analyses and gaining feedback on papers and reports. I think that having this involvement is important in improving the research that we do by having a consumer or community voice within all levels of our research process.

What methods did you use to involve them?

The community reference group, which meets regularly, provided me with an opportunity to present my research and seek feedback on specific issues. I also have consulted a sub-group of the reference group who have more specific experiences in the area of parental mental health.

Who did you involve?

This sub-group is made up of carers and consumer representatives who have accessed the government agency services that we utilise data from, as well as community members who have an interest.

How did you find people to involve?

We have a Consumer Advocate and Program Manager within our organisation who has contacts within many of the consumer or community groups in our area. My specific research has utilised consumer or community members from mental health community support groups and those who support families at risk.

How did you support people to be involved?

Our larger reference group provides an honorarium for representatives and I tried to ensure that I provided flexibility in the ways that consumers chose to be involved in providing me input and feedback.

Did you evaluate the involvement activities?

No.

What made the involvement work well?

The passion and interest of the consumer or community group members about the research I was doing made it work well. I also supported them to be involved as much as they wanted to in terms of meeting in person or as a group, emailing out information and my interpretation of research findings for their response.

What difference did it make to involve consumers or community members in this project?

The involvement of consumers and community members has been invaluable. The group I consulted with gave me valuable insight into the difficulties that parents with mental health problems face and things that I should include in my research and analysis. It also helped me to contextualise my research and be aware of the sensitivities of families when interpreting my research findings.

How would you advise other researchers about planning consumer and community involvement in research?

It is really important to consult with consumer or community reference groups that are related to your research area. It helps to have them involved from the beginning to develop the research plan to ensure that the research is relevant to the community you are trying to improve outcomes for and that you have considered and addressed the issues and concerns regarding your research.

From the consumer - Margaret Cook

How did you get involved in the project?

I was invited by Anne McKenzie, the Involvement Program Manager, to be a member of the committee following attendance at a training course.

What was your role?

My role on the reference group was representing a group of intergenerational children and parents affected by mental illness. I have over 60 years of experience of being involved in these issues and worked for 20 years as a consumer advocate.

What made the involvement work well for you?

Gaining a wider knowledge and insight of the work that is being developed by the Involvement Program.

How did your involvement make a difference?

My colleagues and I added our knowledge to the research team in a way that will influence the findings and outcomes of the research. We had two meetings with one of the research team members, and discussions were presented back to the reference group. The researchers acknowledged that this information had been beneficial for the research findings.

Has it made a difference to you personally or to the other consumers or community members who were involved?

The difference this has made to me has been the experience of being involved at the coalface of research and not tacked on at the end when it is done and dusted. I met others who I learnt from, and this has added to my experience and knowledge. I also learnt how research and data linkage works.

How would you advise other researchers when they are planning to involve consumers or community members in research?

The ideal set up is like the one we have with the Consumer and Community Participation Program at the Institute, or something similar where you have a proper structure and a governance approach.