Friday, 16 December 2022

Walking football for people with chronic breathlessness – has it got legs?

Posted by Callum Bradford, Research Associate, Teesside University

Following on from the recent success of the England Women’s football team, and with the Men’s World Cup final just around the corner, now seems like a good opportunity to talk about our walking football project, designed exclusively for people with chronic breathlessness. What is walking football you ask? Well it's football, without running (you don’t say?!), and the physical contact is a bit more restricted. Thankfully, FIFA hasn't got its hands on walking football just yet, with the World Cup being an example of why we perhaps should avoid such a thing.

 

Chronic Breathlessness is predominantly caused by pulmonary conditions, such as chronic obstructive pulmonary disease (COPD), impacting 75 million people globally. With Covid-19 and an ageing population this number is expected to rise, increasing the burden on families, carers, and health and social care services. For individuals, breathlessness is associated with a lower quality of life, decreased capacity to do exercise, and higher levels of anxiety and depression

Pulmonary rehabilitation is recommended for everyone with breathlessness. Consisting of both exercise and education, its benefits on health are unequivocal, however, any benefits gained by patients are often reduced three months after completion. This is primarily because patients go back to doing less physical activity once the programme has finished and support from healthcare professionals is removed. With this in mind, we wanted to develop an intervention that could step-in when patients finish their rehabilitation, offering a form of exercise maintenance and continued social support. Given the nation's love of football (most of the time), we believed walking football might have potential.

To develop the intervention, we initially consulted pulmonary physiotherapists, and a local walking football team. The physios were initially very sceptical, raising concerns that the pace would be too fast, and highlighting the number of people with breathlessness who required oxygen or walking-aids. Walking-aids?! Oxygen?! I hadn't even considered that. I was starting to worry that this idea might be a complete non-starter.

So next stop was to see some walking football for myself at Middlesbrough’s Herlingshaw Centre. I left the session with mixed feelings. They played three-touch, meaning everyone got the opportunity to play, forcing that one player who thinks they're Allan Saint-Maximin to pass the ball. It was also proactively refereed to the benefit of everyone, with players encouraged to talk to the ref if they felt the pace of the game was too fast. However, after giving it a go myself, the pace was still surprisingly quick, despite what Father Ted might have you believe, bringing back concerns as to whether it would be too high an intensity. What I really needed to know was what patients themselves thought of walking football.

So we linked up with Breathe Easy Darlington, a local support group for people with lung conditions. Describing the input from Breathe Easy members as invaluable to our research over the last few years would be a massive understatement. So much so that, as a small thank you, we held a fundraiser for them last month on World COPD Day, raising £1120.76.

Their opinions would be vital to walking football’s success... however, they were also dubious of the idea. Again, concerns were raised about the speed, the walking-aids, and the balance required to play. So I asked, under what circumstances – if any – would they consider giving walking football a go? They stated that if the football was exclusive to people with breathlessness like themselves, they would give it a try, as they would be able to dictate the pace of the game and not feel too self-conscious of their footballing abilities. Our original plan involved asking patients to join onto sessions at the Herlingshaw. Luckily, by consulting with Breathe Easy members, I now understand how that plan – to mix people with and without breathlessness - would have likely ended in disaster, demonstrating the importance of including end-users when designing research studies.

Twelve Breathe Easy members agreed to play and the stage was set for our walking football taster sessions, and as you can see from our video, I don't think it could have gone much better.

The players embraced the competitive aspect of football, stating that “On the pitch you forget about breathlessness”; and the concern for walking-aids was turned on its head after we agreed that hitting the ball with a walking-stick is a perfectly fine way to score a goal. Our coach, Monty Towers, was key to its success, mixing up the session with fun games, while allowing everyone to play football at their own pace. In our follow-up conversations, members also suggested implementing a buddy system, where more experienced participants take responsibility for introducing new patients to the group so they feel more welcome – a brilliant idea that we intend to implement in the future.

Throughout 2023 we will be assessing the feasibility of walking football following pulmonary rehabilitation in collaboration with both North Tees & Hartlepool and South Tees NHS Foundation Trusts, plus the North Riding FA; and I’m confident if it’s anything like our sessions with Breathe Easy members, it will be a great success.

And if you’re still upset about the World Cup, don’t worry, I’m sure our walking football team will bring it home next year.


The views and opinions expressed by the author are those of the author and do not necessarily reflect those of Teesside University or Fuse, the Centre for Translational Research in Public Health.

Friday, 9 December 2022

What support do children and young people actually want when their parents use drugs and alcohol?

Posted by Cassey Muir, Fuse & NIHR School for Public health Research (SPHR) funded PhD Researcher from Newcastle University and Kira Terry, Lived Experience Expert. 



“No-one has ever asked me about how I feel in any of this.”


I found the powerful quote above from a young person during my research exploring parent drug and alcohol (or substance) use from the young person’s perspective. Since then the question of ‘what support do children and young people ACTUALLY want?’ has remained central to my PhD research in this area.

Most schemes focus on the parents themselves, to reduce the risk to young people. While these interventions are needed it should be alongside and in addition to support for the child or young person as well. There are currently a very limited number of evidence-based interventions for young people whose parents use substances, with low quality effectiveness. The distribution of support services for children and young people whose parents use substances is also patchy across the country, with practitioners doing really great work with little funding and resources.

In a recently published review of the research in this area, I aimed to understand the experiences, perceived impacts, and coping strategies of young people whose parents used substances. The review was extensive - covering the perspective of over 700 children and young people from across twenty different countries - and I hope that it can help to inform practice and policy through illustrative cases of young people’s experiences, as well as giving insights into what support could be useful.

Feeling different and isolated

Working with PROPS Young Person’s Project, a group of young people with lived experience supported the early stages of this review to help us understand the findings. One area that the young people felt was missing and may not have been explored across the current studies was the experience of feeling different to their peers, and how they felt isolated and like they had to keep everything hidden from others. This idea, relating to the experience of stigma, helped me to explore the data from a different perspective.

Children and young people described living highly disrupted and chaotic lives, characterised by unpredictability and insecurity within their relationships. They also often experienced adversity occurring at the same time in childhood, such as parents with mental health problems, domestic violence and abuse, as well as poverty. Children and young people were impacted both emotionally and socially from their experiences of parental substance use, which often extended beyond their parents stopping use, further highlighting that child-focused support is crucial. The painful experience of shame, stigma, and discrimination due to their close association and relationship with a parent who uses substances, was often further compounded for those who had experienced poverty or lower socioeconomic status.

Resisting and coping

Most of the studies described the negative impacts of parental substance, without recognising children and young people’s agency and attempts to change, control, and resist their experiences or impacts. Children and young people tried to manage and mitigate vulnerabilities and be resilient to unpredictable, adverse, and stigmatising experiences. While it is not a child’s role to resist and cope with the negative impacts of parental substance use, they were trying to do this anyway, often without formal support in place. Formal support was often thought of as something children and young people only have at times of crisis and due to the stigma and fear of speaking out it was also difficult for young people to seek support for themselves before a crisis point.

What can we do to support?

The findings had little to say about how young people wanted to be supported following their experiences. So, as part of my PhD I have been chatting with young people, and the practitioners that support them, around what we can do to support and build on their strengths, agency, resistance, and resiliency. For instance, young people and practitioners thought it would be good to develop a digital app that teenagers and young adults can access themselves at any time of day. They can choose what topics or sessions they want to go through and hear about other young people’s stories. Such digital interventions could be used alongside in-person support with a practitioner or act as a gateway to more formal support, with the aim of helping reduce the stigma of speaking out and accessing help. Additionally, young people wanted free text support lines that they can access out of hours, usually in the evening when things may be worse at home. Text and chat-based support lines provide young people with the opportunity to safely get support without having to physically talk to somebody and gives them more flexibility. Both young people and practitioners wanted in-depth training for professionals (e.g. teachers or first responders) around the experiences and impacts of parental substance use on children and young people and how to signpost to support.

Finally, one of the main areas that the young people and practitioners wanted to focus was on the co-production of resources to be used in primary and secondary schools. Young people wanted parent drug and alcohol use to be talked about in schools, as many reflected that it had never been spoken about making them feel more alone and isolated. Having lessons around the emotional and social impacts of family substance use within secondary school, or having story books read out loud in primary school about a child whose parent drinks alcohol or uses drugs would begin to reduce the stigma and fear of speaking about such a hidden and taboo subject.

“I’ve really enjoyed that chat, thanks for reaching out to me and wanting to hear about my experiences and how to support young people.”
Young person after taking part in this study

 

“He has told us he has gotten so much out of chatting with you and is really happy to have been involved and listened to regarding what might help others.”
Practitioner on behalf of a young person 

The young person’s voice

In any decisions made throughout my PhD, I have tried to ensure that the young person’s voice is lasting and at the forefront. Young people have been involved in this project from the start, guiding the research questions, designing research materials, contributing to ethics procedures, analysing data, and presenting results to over 100 practice and policy professionals. To finish this blog post, Kira shares her thoughts on contributing to this project as a Lived Experience Research Advisor and what she thinks is needed to support young people whose parents use substances:

“It has been an absolute honour to be involved as part of this project. To use my ‘negative’ life experience and be able to turn it into a positive impact for other children like me in the future: to help speak for those who feel they don’t have a voice and aren’t seen by people around them in the position they are in. The main part of supporting young children is accessing them and communicating with them. Reaching out to young people in general about parental substance use issues, getting the knowledge out there about it is important. This in turn will help the young people experiencing parental substance use, as the subject isn’t so hidden anymore as it usually feels hidden in the home. And through that we must back up with access to different support links. Some children aren’t ready, some don’t want help, some we won’t reach, but to push and be as present for as many children as possible, as long as possible and to reduce the isolation of the stigma around it is vital.”



Find out more about this research in the first Public Health Research and Me Fuse Podcast: How can we promote resilience in children and young people affected by parental substance use?



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