By Prof Joanne Nicholson, the Institute for Behavioral Health at The Heller School, Brandeis University, Massachusetts
Researchers working in the area of parental mental illness and substance use disorders face a number of challenges conducting rigorous research and implementing change effectively. Now, the highly experienced Prof Joanne Nicholson of the Institute for Behavioral Health at The Heller School, Brandeis University, Massachusetts, reveals that despite the urgency, the opportunities for scaling out and sustaining prevention and intervention innovation for these families are largely unrealized.
I have the good fortune of being the lead editor for the initial Frontiers Research Topic on Parents with Mental and/or Substance Use Disorders and Their Children. With more than 118,000 total views, it seems the topic is of interest to many readers. We know that mental health and/or substance use disorders convey challenges to adults as well as to their children and family members. The risks and impact associated with parental mental illness are undeniable and the opportunities for prevention and intervention abound but are largely untapped. Clearly, intervention development and testing and, ultimately, sustainment, are important issues to be addressed in the field.
Of the 26 papers published in the first special issue, the papers viewed most often to date are those related to the prevalence of parenthood among those living with mental illness or substance use disorder, and the description of their family characteristics, with implications for screening and assessment. Several new interventions received attention, as measured in views, with background regarding theoretical underpinnings and pilot data provided.
Research innovation (ie, the development of relevant research methods and procedures) received substantial attention. Ironically, the single paper addressing the issue of systems change, critical to sustaining family-focused prevention and intervention efforts and essential to meeting the needs of families in which parents have mental illness, is among the papers with far fewer views.
My team has worked in this area for more than 25 years, documenting the experiences and needs of parents, exploring available best practices, and developing and testing our own intervention approaches, as well as adapting the work of others to our context.
The remaining challenge for us and, it would seem, for the field is the translation of research findings into practice innovation that is able to be spread, scaled up and out, and sustained. The barriers to family-focused practice have been identified, and guidelines recommended. Why is it so difficult to implement and sustain these recommendations in the ‘real world’?
Changing the way ‘business’ is done
It is our contention that to change the ‘business’ being done (to encourage the sustainment of evidence-based practices), we need to change the way we ‘do’ business (the development, testing and implementation of interventions). The traditional linear research and implementation model of bench to bedside to community has been challenged.
One solution suggested is to have patients more involved in the research process – from design to implementation to dissemination – for effective, sustainable interventions. The push for diverse stakeholder (patients, practitioners, policymakers, payers) engagement is supported by some funders who require evidence of community participation in preparing research proposals, and by some journal editors, who request paragraphs on patient involvement in research as part of a submitted manuscript. We likely need to elaborate the community context and practice setting that will sustain the practice innovation over time as well.
Serious challenges facing researchers
The challenge my team is grappling with now is not simply the development and testing of strategies for engaging parents in the work we do and hope to inspire in others; the greater challenge seems to be that researchers are not skilled or supported in doing this. The traditional modes of applying for funding, conducting research perceived as rigorous, and disseminating findings are not necessarily supportive of this paradigm shift.
Working with a variety of stakeholders across the research lifecycle means that your research questions and hypotheses may change, as your assumptions are tested while you are conducting the work. In other words, the answers to your questions don’t emerge simply at the end of your study.
As you involve stakeholders all along the way, your basic assumptions may be called into question, with decisions to be made about how to proceed as new information emerges. In fact, your study at the end may not look at all like what you proposed at the beginning. This may be anxiety-provoking or upsetting to your team and confusing to your funder, who expects a specific, pre-determined outcome or set of deliverables. Traditional research models may not necessarily support new or different ways of ‘doing’ business.
We are embracing an approach for research participation drawn from the business sector as we build out our suite of evidence-based tools and resources for supporting neurodivergent people in achieving their life goals – in this instance, success in employment and parenting and family life. The neurodivergence umbrella covers a broad population of people whose ‘brains work differently’, including autistic people, those with ADHD and, more broadly, individuals living with anxiety and depression, frequently co-occurring with conditions more traditionally considered neurodivergent or disabling.
Bringing breakthrough science to the real world
Recently, we participated in the US National Science Foundation I-Corps program, funded to promote the transfer of research findings into real-world accessible, sustainable ‘products’. Program participants were required to conduct 100 customer discovery interviews in seven weeks, to address hypotheses inspired by initial attempts at framing a business model for producing and selling a product.
Through this process we learned from interviewees, who did or did not validate our ever-changing list of hypotheses. Interview data were used to refine the business model further, allowing us to focus in on what matters in our plan to bring our innovative solution to market, addressing our customers’ pain points, while considering questions like: ‘Who will pay for this’, ‘how much will they pay’; and ‘who are the influencers and the decision-makers who will select our product?’
A rapid, facile, iterative approach to intervention or treatment development, adaptation and scale-up would seem justified, given that we are working in an area where evidence-based models exist, but are not as widely available or accessible as one would hope, or as people need. Strategies borrowed from the business world (the customer discovery process) seem appropriate as we attempt to influence the way we do business, as well as the business we do.
In fact, I would suggest that customer discovery approaches such as this, deployed from the beginning of a project, are critical to the development, testing and eventual sustainment of any innovative intervention or treatment, and are essential to the adaptation of an existing evidence-based intervention to a new population, geographic or service setting.
Stakeholder engagement in research is advised but, for some reason, challenging for many researchers. Borrowing the customer discovery approach from our business colleagues may provide a framework for thinking about the interventions we develop as products and the work we do as business – the business of helping the people we treat or serve to feel and do better. This, in turn, may contribute to sustaining our efforts in the real world on their behalf.
If you have recently published a research paper with Frontiers and would like to write an editorial about your research, get in touch with the Science Communications team at firstname.lastname@example.org with ‘guest editorial’ in your subject line.