Innovative programme to boost parent carer mental health goes national

A group programme developed by researchers and parent carers in the South West is helping address a lack of support nationally for parents of disabled children.

Parent carers (defined as the adult primary caregivers for a disabled child) face increased risk of mental and physical health problems. Many prioritise caregiving and fighting for support for their children, so may neglect their own wellbeing.

Healthy Parent Carers is a programme of face-to-face or virtual group sessions, delivered by trained facilitators who are themselves parent carers. It promotes empowerment, resilience and confidence, and encourages taking small steps and setting achievable goals associated with better health and wellbeing.

The programme has been co-created by researchers in the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South West Peninsula (PenARC)-supported Peninsula Childhood Disability Research Unit (PenCRU), based in the University of Exeter Medical School, and parent carers from the PenCRU Family Faculty.

Healthy Parent Carers has been tested in a series of studies examining its effectiveness and cost-effectiveness, and whether it could be delivered in community settings and remotely via Zoom. A current NIHR-funded project is investigating whether it is accessible and acceptable to parent carers from diverse social and ethnic groups, ensuring equitable access for all families who might benefit, and reducing the risk of reinforcing health disparities.

The team behind Healthy Parent Carers is now upscaling the training of facilitators across the country, to enable more families to benefit from the programme. Local authorities, charities and other organisations wishing to commission the programme can enrol a lead and assistant facilitator on the 7-session training course, to gain the accreditation necessary to deliver Healthy Parent Carers in their area.

Erin Stevens is a Family Help Worker in Northumberland, and a parent carer of two children: a 17-year-old girl who has type one diabetes, and an 8-year-old son with autism and epilepsy. She benefited from the Healthy Parent Carers programme last year as a participant, and has now trained as a facilitator. She is hoping to start delivering courses in her region in the near future.

Erin said: “The course helped me massively. I had become very complacent with my own diabetes and as a parent, I wasn’t really putting myself first because I prioritised my children.

“The programme made me reflect on my own health, and helped me to make little changes. When parent carers get together, we tend to talk about our children and what their additional needs are, but this is very clear, that's not what the course is about. It's about thinking about how to look after yourself by doing things differently.

“What I realise now is that if parents are not in a good way, we can’t look after our children as they need.

“When I started my course, my HbA1c was really high. But after three months, from really taking on board the need to build more activity into my life and look after myself, I had reduced it significantly. So that’s the evidence that it worked for me.”

The HbA1c test is a key measure indicating how well someone’s diabetes is being controlled.

The Healthy Parent Carers intervention is based around the CLANGERS. This is      a set of small, universal, and evidence-based behaviours shown to be associated with better health and wellbeing: Connect, Learn, be Active, Notice, Give, Eat well, Relax and Sleep.

Erin continued: “The programme helped me find things that I never thought I’d enjoy, but which really make a difference. I never saw myself doing something like mindfulness colouring activities, but I'm doing more creative stuff than I was before and it’s having an impact on my mental wellbeing.

“I think other parents who are in a similar boat to myself can really benefit from the programme. I feel a lot less isolated now, like I'm not the only one out there.”

Erin is exploring the possibility of delivering a course virtually to better meet the needs of parent carers in her rural, sparsely populated area.

She added: “I think there are a lot of people in our area who would benefit from the programme, and I’ll be able to signpost some of the families that I currently work with to it. We know a lot of people don’t even recognise themselves as a parent carer, and at times, you have to fight for services for your children.

“Part of the benefit of the course is that parents are able to find out about resources in the area, and access things they didn't know about. This ability to ‘self-help’ is really quite empowering.”

Bel McDonald is the lead trainer for Healthy Parent Carers, and a parent carer herself. She said: “I have been involved in the programme from the very beginning as I was part of the team who co-created it. All those years ago I could never have foreseen the impact the programme would have, and that we would be training facilitators from across the country to deliver it.

“The programme has been described as life-changing and transformative. Participants have formed lasting friendships and peer support networks where previously they had felt quite isolated. Some have returned to work or started volunteering but most importantly, they have learnt why it is important to consider their own needs and the importance of looking after themselves.

“I believe that the success of the programme is down to the safe supportive environment that is created because it is delivered by parent carers. We train them to not only deliver the content, but also how to create the environment which allows the participants to really open up and share their own experiences. The CLANGERS can fit easily into their lives once they have learnt about them and why they are important to help improve their health and wellbeing.

“I love delivering the training, and my favourite bit is that the facilitators personally benefit from attending the training and delivering the programme.”

Professor Christopher Morris, Professor of Child Health Research, University of Exeter Medical School, leads the project as well as PenCRU.

He said: “Healthy Parent Carers is the only peer-led group-based health promotion programme conceived, designed, and delivered by parent carers for parent carers.

“There is lots of evidence that parent carers are at risk of poor mental and physical health, and these problems were exacerbated during the pandemic when many services and supports were withdrawn.

“Yet until now, the health needs of parent carers have largely been neglected, with potential adverse impacts on their children and families. The Healthy Parent Carers programme is led by trained parent carer facilitators and involves working online or in person in a group to adopt behaviours linked with better health.

“It is so richly rewarding to see the programme being implemented around the country by our delivery partner organisations, who are charities and local authorities.

“Our latest research provides evidence for how to ensure diverse groups of parent carers can engage with Healthy Parent Carers. We want to ensure all parent carers have an opportunity to benefit from the programme.”

For more information on Healthy Parent Carers, visit www.healthyparentcarers.org/