A South West study is investigating mental health support for parent carers of children with special educational needs or disability (SEND), aiming to improve the help offered to a group that can be overlooked as services focus on the needs of the young people they care for.
The SPaCE Project – Support for Parent Carers in England is led by researchers at the University of Exeter and funded by the Three NIHR (National Institute of Health and Care Research) Research Schools Mental Health Programme. It is supported locally by the NIHR Clinical Research Network South West Peninsula.
Through surveys, interviews and analysis of health data, SPaCE is trying to find out whether parent carers in England are more likely to have mental health problems than other parents, and whether this problem has become worse since the start of the pandemic.
The team also wants to learn what it is about their situations or caring roles that might particularly impact their mental health and crucially, whether parent carers who experience problems are being identified by the health or social services they are in contact with, and what kinds of support or treatment they are getting.
The SPaCE Project has several phases, with a survey asking parent carers about their experiences already complete and reaching its target for responses. Professionals who work with parent carers of SEND children are now being asked for their views, via a survey open until mid-July.
Some parent carers are also being asked to take part in interviews to find out more detail about their experiences accessing mental health support and treatment.
Bel McDonald is one of three parent carer co-investigators for the study, as well as the family involvement coordinator at PenCRU – the Peninsula Childhood Disability Research Unit, which is based at the University of Exeter and part of the NIHR Applied Research Collaboration South West Peninsula (PenARC).
As someone with firsthand experience of the challenges faced by parent carers, Bel offers a hugely valuable perspective to the study team, and inside knowledge of the issues SPaCE is seeking to address.
She said: “When my son was a baby, he was fighting for his life for the first year. That stays with you, and the trauma from that sort of experience can be triggered at any time. For a long time, I don’t think people realized that parent carers could suffer from PTSD.
“However, despite the potential impact of their situation on their own health, parent carers always put themselves bottom on the list of priorities. As a group I’d say we are completely and utterly rubbish at considering our own health and wellbeing, because we’re so busy looking after our vulnerable young people. We do so much fighting for our children and young people to get the services and support they need, the energy to look for something for ourselves just isn’t there.
“We don’t necessarily seek help for our mental health, but also, we are very often not offered it. Nobody asks, ‘how are you? Is there anything we can do for you?’ Often we’re addressed as mum or dad, we don’t even have a name.
“It’s a complex issue, and there are many barriers to getting the support some of us need. The stigma around asking for help is massive. I know it’s less now than it was probably even five years ago, and it’s the same for everybody. But if you’re a parent carer and you have a disabled child, there is a fear that your children might be taken away from you because people think you can’t cope, even though that’s fairly irrational.
“We might also be afraid of judgment, because a lot of parent carers, particularly if they’ve got children with behaviour that challenges, feel judged and gaslit. There’s a lot of parent blame that goes on, that your child isn’t behaving in school or elsewhere because of your parenting. Well actually, it’s because they’re autistic, for example, and there’s nothing that’s going to change that.
“We really need to learn to look after ourselves, because we’re the scaffolding that keeps everything up. And if we don’t look after our mental health, everything can come crumbling down.”
The University of Exeter’s Dr Gretchen Bjornstad is Senior Research Fellow and Programme Manager for the Child Health and Maternity national priority programme at PenARC, and the SPaCE Project’s Chief Investigator.
She said: “It is likely that many parent carers have mental health problems that go unidentified and untreated. The huge response to our first survey demonstrates how important this issue is to parent carers.
“We look forward to hearing from health, social care, and education professionals to learn about barriers and pathways to mental health support through their services and to find good practice examples to build upon. The hope is that this project will enable us to develop and test strategies to help parent carers to access the support that they need.” The SPaCE Professionals survey is open until 18 July 2023, and responses are welcome from anyone that works with families of children with SEND. For more information and to take part, visit the website: https://sites.exeter.ac.uk/space/.