# An Exploratory Study of Research Needed for the Improvement of Care and Services for Persons with a Lived Experience of Mental Health Challenges

## TL;DR

This study explores how involving people with mental health challenges in research can improve care and services for them.

## Contribution

It identifies specific research gaps and themes from the perspectives of individuals with lived experience of mental health challenges.

## Key findings

- Participants highlighted the need for better access to care and early detection strategies.
- Themes around care and treatment revealed fifteen categories of research priorities.
- Continuity of care was identified as a key area requiring further investigation.

## Abstract

Public health relevance—How does this work relate to a public health issue?
This research relates to care and services for individuals with severe mental health challenges.Despite decades of mental health policy and practice reform activity, as well as mental health research, which have together involved significant public health resources, there has been limited evidence of improved service quality for people with mental health challenges.

This research relates to care and services for individuals with severe mental health challenges.

Despite decades of mental health policy and practice reform activity, as well as mental health research, which have together involved significant public health resources, there has been limited evidence of improved service quality for people with mental health challenges.

Public health significance—Why is this work of significance to public health?
For people with mental health challenges, and for their careers and families, issues of equity, disempowerment, tokenism, and exclusion from decision-making and involvement in shaping public health policy persist.This work highlights that lived experience perspectives are necessary in determining what is researched, and co-design must occur to achieve effective public health outcomes for this population.

For people with mental health challenges, and for their careers and families, issues of equity, disempowerment, tokenism, and exclusion from decision-making and involvement in shaping public health policy persist.

This work highlights that lived experience perspectives are necessary in determining what is researched, and co-design must occur to achieve effective public health outcomes for this population.

Public health implications—What are the key implications or messages for practitioners, policy makers and/or researchers in public health?
The lived experience perspective demonstrates that optimal care for individuals with severe mental health challenges extends beyond current mental health service delivery and includes a system-wide approach.Leadership of persons with lived experience in research sheds light on how systems could better support and be held accountable to those with a lived experience of mental health challenges.

The lived experience perspective demonstrates that optimal care for individuals with severe mental health challenges extends beyond current mental health service delivery and includes a system-wide approach.

Leadership of persons with lived experience in research sheds light on how systems could better support and be held accountable to those with a lived experience of mental health challenges.

Individuals with a lived experience are increasingly being included in the design of mental health services research. Obtaining perspectives of persons with a lived experience of mental health challenges on research that is important to them is an opportunity to achieve equity in allocating resources so that policy-makers and health research funders are made aware of the issues that matter to people who are affected by research. The purpose of this study is to explore lived experience perspectives on research needed for the improvement of care and services for persons with mental health challenges in order to improve the quality of care and service delivery. This qualitative study was conducted in Australia and was informed by biographical research and interpretive phenomenological analysis [IPA]. Twenty-one participants were interviewed for the study. The theme, ‘Access to care and early detection’ included eight categories. The theme, ‘Care and treatment’, included fifteen categories. The theme, Continuity of care’, included six categories. Research questions were developed for each category and serve as a first step towards initiating research on the identified topics. Research topics identified in this study were categorized as insufficiently researched, emerging areas of interest, or well researched with insufficient translation into practice.