A theory informed relational model of engagement from the CORE study and its implications for randomised controlled trials research

Conference:

SAPC ASM 2016 - Dublin

Presenter:

Jane Gunn

Co-authors:

Lauralie Richard, Kali Godbee, Donella Piper, Rosemary Callander, Wayne Weavell, David Pierce, John Furler, Rick Iedema, Jane Gunn, Victoria Palmer

Author institutions:

The University of Melbourne, University of New England, Tandem (representing Victorian Mental Health Carers), Victorian Mental Illness Awareness Council, University of Tasmania,

Problem

Engagement is becoming an important component of community-based interventions, trial designs and health research broadly but the concept is difficult to define. To date, the topic of engagement in research has been confined either to community engagement or limited largely to increasing recruitment, with an emerging focus on involvement of participants (or end users) in the design of research questions and interventions. There are two clear gaps which are relevant to consider in the research context. The first is the absence of engagement models which have been designed to be embedded across the continuum of trials (for example, from recruitment, intervention implementation to translation). The second is where there are examples the theoretical underpinnings tend to be unaddressed or not well explicated.

Approach

To address these gaps, our aim was to develop a theory-based engagement model for the CORE study. The CORE study is a stepped wedge cluster randomised controlled trial currently underway in Victoria Australia. The trial is testing if an experience based co-design method called Mental Health Experience Co-design (MH ECO) can improve psychosocial recovery outcomes for people affected by mental illness. MH ECO is a quality improvement process that itself hinges on the engagement of service users, carers and staff in identifying areas of change, co-designing solutions and implementing changes. The engagement model was designed with a number of challenges in mind. These challenges included: : (1) how to increase recruitment and retention with people living with mental illnesses and their carers, known to be difficult to reach groups; (2) how to improve user, carer and staff engagement and knowledge of complex interventions at mental health services; (3) how to facilitate wider translation of the intervention beyond the life of the trial.

Findings

The engagement model was developed using a structured iterative approach. We reviewed literature on recruitment and retention of hard to reach groups in complex interventions and randomised controlled trials, and knowledge transfer. This was followed by an extensive mapping of trial sites and the development of descriptive portraits about site context, policies, recovery models and organisational structures. This information was used in conjunction with relational ethical theories (particularly Sartre’s ethics of engagement) and a knowledge translation model that focused on cognitive, strategic and logistical practices for research. The final engagement model combined purposive strategies and activities to engage different study participants across the trial continuum (from recruitment to translation).

Consequences

The CORE Study model of engagement coalesces on two facets: one relational and the other continuous. The relational facet is underpinned by Sartre’s ethics of engagement (awareness, responsibility and respect) and the continuous facet is supported by complex adaptive systems thinking, and knowledge translation theories. The idea is that engagement is viewed across the trial continuum.

Submitted by:

Kali Godbee

Funding acknowledgement:

The CORE study is funded by the Mental Illness Research Fund and the Psychiatric Illness and Intellectual Disability Donations Trust Fund. The Mental Illness Research Fund aims to support collaborative research into mental illness that may lead to better treatment and recovery outcomes for Victorians with mental illness and their families and carers.