More support needed for families caring for former athletes living with neurodegenerative disease, new study shows

16 Nov 2021

Following former Rugby World Cup winner Steve Thompson's diagnosis of early-onset dementia at 42, and probable chronic traumatic encephalopathy (CTE), a new research study explores the experiences of family members of former athletes with CTE.

While the focus of much existing research is on the athlete themselves, this study - led by the University of Winchester in collaboration with Bournemouth University and Oxford Brookes University - sought to tell the stories of family members who had lived with a former athlete with CTE.

In this new study, researchers interviewed partners and children who had experienced an athlete go through severe cognitive and behavioural decline before dying, to understand the challenges they faced, as well as their emotional responses and coping strategies as they lived through these experiences.

In-depth interviews were carried out with relatives of deceased athletes, who had CTE linked to repetitive head impacts from playing sport. The athletes were primarily players of American football, both amateur and professional, and were aged between 47 and 74 years of age when they died.

All participants attended the Legacy Family Huddle in Orlando, Florida in February 2020, an event organised by the Concussion Legacy Foundation that seeks to provide support to families as well as connect them with each other.

Researchers found:

  • An athlete's neurodegenerative decline had severe emotional consequences for family members, including the confusion of not understanding what was happening, a sense of hopelessness and frustration at witnessing such a change in people they love, as well as not knowing what to do to help and support their family member.
  • Other emotional responses included embarrassment and shame, especially when erratic behaviour took place in public, fear for themselves and others when behaviour became aggressive, and guilt prompted by feeling they had failed to effectively help and support the family member during their decline.
  • Limited coping strategies were employed by family members during the life of the athlete, with participants struggling to come to terms with the changes in their family member during this time.
  • The most prominent coping strategy came after the death of the family member, when people began to try to find answers concerning the illness, with understanding reducing confusion and bringing some relief.
  • Attendance at the Huddle itself also provided participants with the opportunity to share their experiences with others who 'knew what they were going through'
  • Many of the family members have since become advocates for change in professional sport, to prioritise the health and safety of players over and above sport itself.

The study findings are presented as an 'ethnodrama' in the form of a play script produced using the direct quotes of participants. This innovative and thought-provoking approach allows vivid emotions and experiences to be strongly conveyed to a broad audience, including families currently experiencing similar challenges.

Dr Matt Smith, Senior Lecturer in Sport and Exercise Psychology at the University of Winchester, said: "Our study aims to contribute to the under examined social aspect of brain injuries by providing a thorough examination of the experiences of family members of athletes with neurodegenerative disease."

"Neurodegenerative disease has far reaching effects on those living with the condition and their partners, siblings and children, who are under immense strain, and this represents a growing health concern and societal problem."

"We hope that understanding the emotions and coping strategies employed by family members at different timepoints of the disease will allow the findings to be used to support other families who are at various stages of living with and caring for an athlete with neurodegenerative disease."

Former England rugby player and Rugby World Cup winner Steve Thompson welcomed the research:When I was diagnosed with dementia and probable CTE I wasn’t just worried about me but I was worried about my family. This doesn’t just affect me, it has an impact on all of us. I'd say it has a bigger effect on my family than me. So to know people are working on and researching ways to make life easier for us and to know how to deal with things when they are bad is important.”

Dr John Batten, Senior Fellow in Learning and Teaching at the University of Winchester, said: "The findings should also help practitioners and policy makers, such as sporting governing bodies, as well as charities, such as the CLF and the Jeff Astle Foundation, to understand more fully these emotional responses and in turn consider strategies that might be developed to further support people in these situation.s"

"We are also keen to further our research into this issue and undertake further studies in the UK. We are interested to hear from anyone with experience who would like to discuss taking part in future studies."

Dr Adam J White, Executive Director of the Concussion Legacy Foundation UK and Lecturer in Sport and Coaching Sciences at Oxford Brookes University said: "The damage of repetitive head impacts on athlete's brains has been pulled into the spotlight over recent years. But we have forgotten the impact that CTE has on the wives, children, brothers, and sisters who must witness first-hand the destructive nature of this condition. Their stories and experiences are also important, and they too are a group of people desperately in need of help, support, care, and answers. Through this research, we hope to shine a spotlight on this group and their needs."

Athletes with Neurodegenerative Disease: A Phenomenological Exploration of Family Members' Experiences is published in The Qualitative Report and is available online at this link: https://nsuworks.nova.edu/tqr/vol26/iss11/10/  Lead author: Dr Matt Smith of the University of Winchester.

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