We’ve got something a bit different for you today. Not a blog about a new piece of mental health research, but a thought-piece from Aleem Nisar, an educational practitioner and researcher, who, in his own words is interested in “social research which aims to engage with under-represented or “hard-to-reach” groups, or, which explicitly intends to recruit equitably.”
Academics and researchers often seek participation from the public when designing interventions or co-producing resources. So far, so good; ‘nothing about us without us’ is a long established principle for research which aims to be inclusive.
Yet, a problem exists about exactly whose voices are routinely heard, and whose remain seldom-heard.
When conducting mental health research to support the wellbeing of children and young people, it can be difficult to hear from a diversity of caregivers. Researching qualitatively, I have worked with several dozen, ethnically and economically diverse carers, exploring their perspectives about childhood mental health. Once engaged, carers were keen to talk about these issues, but I found it very challenging to recruit them initially.
This difficulty in accessing diverse caregivers is also evidenced in larger scale quantitative research; the Emerging Minds Network gathered perspectives from over 9,000 parents about how COVID had affected their children’s wellbeing. The vast majority of parents who took part in the survey were from backgrounds similar to each other (Co-space, 2021).
So was this ‘universal’ questionnaire specifically targeted at white, middle-class mothers? Of course it wasn’t, but examining the demographic data of respondents, might suggest otherwise.
Health research must include a diverse sample of our population if it is to improve the lives of the people we hope to help.
Diversity in research
Engagement around childhood mental health that is accessible to all parents and carers is important. This is because academic research clearly demonstrates that disparate demographics of caregivers experience mental health challenges differently. Similarly, how parents respond to the support that is intended to help them can vary, across divides of social class, household income and ethnic origin. This is why seldom-heard voices should be represented when designing or co-producing services which aim to help all parents.
Seldom-heard voices should be represented when designing or co-producing services which aim to help all parents.
So if everyone is invited to contribute to research, is actively seeking diversity necessary?
It could be that working class and ethnic minority parents are less concerned about mental health issues amongst young people. Or, it might be that they don’t want to talk about such problems, and that this might be due to cultural differences. In either case, it could be argued that their right not to participate is perfectly reasonable, and so this might suggest that the current situation doesn’t need addressing.
However, the conversations that I have had over the last few years with diverse caregivers does not support this view. Cultural issues do arise, but time and again after they were engaged, diverse carers have chosen to speak to me about their concerns about young people’s wellbeing issues and have wanted to access further support.
Caregivers from all backgrounds want support for their young people’s wellbeing, but some people might need extra help in accessing the support they need.
My work indicates that there are several main barriers to hearing diverse voices:
1. Minoritised parents do not trust services
This is a message that has been clearly, and repeatedly, articulated to me.
When discussing a child with a mental health problem, a parent told me: “[social services] take the children off you”
A community worker told me: “Parents are terrified of social services … they are scared what [they] might do”
A parent speaking about the lack of trust, said: “I don’t blame the charities, we need to change our culture…we need to educate the parents”
As many of the parents I spoke with didn’t discern between statutory and third-sector organisations, I believe that this level of suspicion is one of the reasons that engagement is challenging.
2. Mental health is often still a taboo subject
The stigma around discussing mental health remains extremely problematic in many different ethnic minority cultures. This is in contrast to the wider UK population, where to a large extent, campaigns have been successful in raising awareness about mental health (Foulkes, 2022).
One parent told me: “People in our community do have a problem with recognising it [mental health issues] …when it is clear as day that a child has an issue, we do not want to say the word”
Another said: “mental health is not spoken about in the right way. It needs more education”
These parents were often keen to discern between views they described as routinely held by others in their community, and themselves. Once parents were engaged appropriately I found that they were very open about sharing their views about mental health.
The stigma around discussing mental health remains extremely problematic in many different ethnic minority cultures.
A re-focused approach
My research has clearly demonstrated to me that diverse parents do want support about mental health issues. Yet, they are not reachable by universal engagement methods. Rather than these parents being ‘hard to reach’, it might be more accurate to describe engagement methodologies as “hard to access” (Cortis et al., 2009; cited by Hackworth et al., 2018).
Researchers might then assume that universal entreaties will not engage parents equitably. Diverse engagement will only be effective when targeting interventions at seldom-heard parents.
What could be done
Mental health services are experienced as fragmented; carers from every demographic have described to me their struggles to access support. People are often referred to online services, and these can be difficult to navigate. Those parents with the least social capital (or ability to connect with others outside their everyday lives) are disproportionately affected by this. Parents often told me that they wanted face-to-face services.
Adult and community education providers, after-school childrens’ sports clubs, primary school PTA groups and places of worship, all have community practitioners who are already purposefully interacting with families. Harnessing their expertise helped me to overcome the mistrust that parents exhibit. These ‘bridging’ locations help to offer caregivers the chance they want, and need, to talk. This offers solutions to researchers seeking equitable engagement and to parents who struggle to discuss these issues within their communities.
In this way, interventions and research can be taken to caregivers, rather than the other way round.
Do your services and studies reach the parts that other services and studies cannot reach?
Conclusion
Universal mental health interventions which are intended to gain or disseminate population-wide information, are not effective at connecting with a range of parents. Once this is acknowledged, more specific methodologies can be pursued to serve parents and carers more effectively.
Links
Co-Space Study (2021) ‘Supporting Parents, Adolescents and Children during Epidemics’ (PDF).
Hackworth, N.J. et al., (2018) ‘What Influences Parental Engagement in Early Intervention? Parent, Program and Community Predictors of Enrolment, Retention and Involvement’, Prevention science. New York: Springer Science and Business Media LLC, 19(7), pp. 880–893. doi: 10.1007/s11121-018-0897-2.
Foulkes, L.(2022) ‘Mental health awareness – time to re-focus’.
Great post!!!
Despite the growing awareness of mental health issues, cultural taboos and beliefs continue to hinder open discussions and access to resources within various ethnic minority communities. It is always better to consult mental health practitioners if there is a need to bridge the gap between parents and children.