Ideas of and issues in engagement and participation including overcoming barriers.
Contemporary mental health policies call for consumers to be engaged in all levels of mental health service planning, implementation, and delivery. Critical approaches to traditional healthcare hierarchies can effectively challenge barriers to better engagement with consumers in mental health organisations.
This qualitative exploratory study analyses how particular strategies for consumer leadership facilitate or hinder relationships between consumers and mental health services, and how these strategies influence hierarchical structures. Fourteen participants from a range of mental health organisations were interviewed. These interviews were analysed using thematic analytic and discursive psychological techniques. The findings highlight several benefits of having consumers within mental health organisational hierarchies, and elaborate on ways that employees within mental health services can support integration of consumers into existing hierarchies. Specific barriers to consumers in hierarchies are discussed, including a lack of clarity of structures and roles within hierarchies, and resistance to consumers reaching the highest levels of leadership within organisations. Alternative hierarchical models which privilege consumers' control over resources and power are also discussed. Mental health organisations are encouraged to integrate consumer leaders into their hierarchical structures to improve their organisational offerings, their reputation, and their service innovation.
Background: There are significant challenges across the research pathway, including participant recruitment. This paper aims to explore the impact of clinician recruitment decision-making on sampling for a national mental health survey.
Method: Clinical teams in 20 English mental healthcare provider organisations screened caseload lists, opting-out people whom, in their judgement, should not be approached to participate in a survey about stigma and discrimination. The reasons for each individual opted-out were requested. We assess these reasons against study recruitment criteria and investigated the impact of variations in opt-out rates on response rates and study findings.
Results: Over 4 years (2009-2012), 37% (28,592 people) of the total eligible sampling frame were excluded. Exclusions comprised three categories: clinical teams did not screen their lists within recruitment period (12,392 people: 44%); protocol-specified exclusions (8364 people: 29%); clinician opt-outs queried by research team (other reasons were given) (7836, 28%). Response rates were influenced by decision-making variations.
Conclusions: Large numbers of people were denied the opportunity to choose for themselves whether to participate or not in the Viewpoint Survey. The clinical research community, and their employing organisations, require support to better understand the value of research and best practice for research recruitment.
Personalised care involves shared decision making (SDM) across all levels including choice in medication. However, there are a number of barriers which prevent its effective implementation in routine mental health settings. Therefore, we undertook a study to benchmark current practice across clinical services of a large urban mental health provider.
The study formed part of the trust-wide 'Supported Decision Making in Medication' Co-Production Project and aims to inform future recommendations in delivering against contemporary best practice, guidance and policy. A survey exploring the views and experiences of service users and prescribers on shared and supported decision-making in medication was carried out in West London NHS Trust. Questionnaires were fully co-designed and co-delivered by a group of health professionals and individuals with lived experience. There were 100 responses from service users and 35 from prescribers. There was some good practice where both parties reported good quality conversations concerning dialogic styles, collaborative process, information provided and range of choice offered. However, prescriber's perception of their practice was not always mirrored by service user feedback whose experiences often depended upon the prescriber, the time available or the part of the service. Generally, service user experience fell short of the good practice cited by clinicians though there was noticeable variability. Commitment from organizations and increasing understanding from practitioners are vital in transforming SDM from rhetoric into reality. From our findings a further challenge is to ensure that prescribers and service users have the time, information and tools to implement it consistently.
Over the past two decades, there has been an increase in the inclusion of consumers and families/ carers in decision-making in services, policies and programs. More and more consumers and families/ carers are actively contributing their unique lived experience perspective to develop more responsive and improved quality in services. This aligns with national mental health inquiries and reports, recommending increased consumer and family/ carer participation across all aspects of mental health planning/evaluation, design/conduct of research, peer support services and representative roles.
Further to the NMHC’s 2017 Consumer and Carer Engagement and Participation Project, this report was commissioned to examine ways to support people with lived experience to effectively and safely participate with services, organisations and systems. In 2018, we worked with David Butt & Associates to consult with key leaders to understand how to support people with lived experience to fulfil appointed or assigned roles, regardless of whether they are a CEO, a peer worker, a committee member or a board member.
This report describes essential ingredients and considerations for effective and safe engagement and participation, and demonstrates positive changes. But it also confirms that more still needs to be done. It highlights that supporting better, safer and more effective engagement and participation with people with lived experience, their families and other support people requires shared or mutual development for all people engaged in mental health and suicide prevention, and not just those with lived experience.
This project, together with other work where the NMHC examined policies and frameworks for consumer and carer engagement and participation, demonstrates there are countless policies, procedures, strategies, plans, reports, standards and indeed laws about what needs to and should happen. There are excellent examples of good practice. Things have improved and continue to improve. But like many issues in mental health and suicide prevention, systems are patchy, siloed, highly dependent on individual endeavour and commitment, and lack uniform application. Work must continue to support better, more safe and effective engagement and participation with people with lived experience, their families and other support people. The NMHC will continue to promote safe and effective consumer and carer engagement and participation as it has done since its establishment, as a focus area and an important and ongoing part of the NMHC’s core business.
The National Mental Health Consumer and Carer Forum and the National Primary Health Network Mental Health Lived Experience Engagement Network acknowledge the Traditional Custodians of the lands and waters on which we work and live on across Australia. We recognise their continuing connection to land, waters, culture and community. We pay our respects to Elders past and present.
“A lived experience recognises the effects of ongoing negative historical impacts and or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. It encompasses the cultural, spiritual, physical, emotional and mental wellbeing of the individual, family or community.
“People with lived or living experience of suicide are those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, been bereaved by suicide or having a loved one who has died by suicide, acknowledging that this experience is significantly different and takes into consideration Aboriginal and Torres Strait Islander peoples ways of understanding social and emotional wellbeing.” - Aboriginal and Torres Strait Islander Lived Experience Centre
We welcome Aboriginal and Torres Strait Islander people to this site and invite them to provide any feedback or items for inclusion.
We also recognise people with lived and living experience of mental ill-health and recovery and the experience of people who are carers, families, kin, or supporters.