We look back at the Anchor Point knowledge exchange event, which looked at all aspects of family support and intervention after life-changing brain injury, and what more we could and should be doing. By Kirsty Simpson, Sara Rose and Amy Harrison.
Earlier this year, a ‘Families After ABI’ knowledge exchange event was held at the University of Derby.
The event was delivered by Anchor Point, a national association with a mission to drive change to improve the lives of families after ABI. Anchor Point has seven working groups: Research, Information, People, Policy, Lives, Education, and Strategy.
The knowledge exchange event was a specific output of the Lives and People working groups supported by Dr Charlie Whiffin (Chair) and Dr Aly Norman (Deputy Chair). The University of Derby provided funding under their ‘Knowledge Exchange Framework’ accelerator fund which aimed to support academics to work with non-academic partners to develop knowledge for the benefit of wider society.
The event
Over 70 people registered for the event, ranging from health and social care students, academics, professionals and family members of persons with ABI.
Dr Whiffin opened the event and discussed the lack of changes to clinical practice despite increasing research that offers evidence and practical recommendations, a frustration shared by many in attendance.
Similarly, Trevor Greenway, a parent of a young boy with an ABI, presented an account of his experiences to frame the event. Trevor’s story highlighted how difficult it is to navigate the emotional journey as a family member.
His story illustrated the lack of information and accessible support and resources available to families and reinforced the importance of Anchor Point and its mission.
Letters to self
The event then started with a live reading by students from the University of Derby sharing the product of the ‘letters to self project’.
The project was led by the lives working group whose aim is to ‘Amplify the voice of families after ABI so their unique experiences are heard, and their individual needs understood’.
Prior to the KEF event, the Lives group had invited family members of individuals with an ABI to share their stories through writing letters to their ‘past’ selves, offering insights and guidance on their experiences.
The participants found that writing the letters was an emotional yet cathartic process.
The Lives group served as a support network, helping each individual navigate the intricate emotions that emerged while crafting these deeply personal narratives.
Dr Sue Jackson’s continued involvement and guidance throughout the process was invaluable.
Dr Charlie Whiffin then worked with the students, and her ten-year-old daughter, to have these read aloud at the KEF event.
This approach provided a powerful means of conveying the complexities of life after ABI to the audience from a range of family member perspectives. By reading through the letters, the group experienced a profound sense of connection and empathy.
Each story held its own power, but collectively, they exposed the deep isolation, sadness, and confusion that families affected by ABI often experience.
The emotions evoked by the letters left a lasting impact on the group, highlighting the urgency of raising awareness and addressing the concerns and difficulties faced by these families.
A debrief was then led by Dr Andrea Pickering to ground people and their emotional response to the reading before we moved on.
A booklet of these letters has been produced and can be requested by emailing ancorpoint@UKABIF.org.uk. The letters to self project is a live project and letters will be added if we receive any from family members in the future. If you, or someone you know, would like to contribute please email Anchor Point ancorpoint@UKABIF.org.uk.
The search for support
In the next presentation Sara Rose, a dance movement psychotherapist and PhD student at the University of Derby, talked about her experience as an ‘outsider looking in’ trying to find support for families affected by ABI.
Sara had been given the task of mapping what support was available for non-injured family members through internet searches using language that families may themselves use. Sara tried to put herself in the shoes of a family member and was surprised at what she learnt during the process.
Sara began the search, hopeful that there would be plenty of information to explore. However, the experience turned out to be a very different story and Sara quickly found herself frustrated and lost.
The initial search focused on services offered in the private and charitable sectors.
It was clear very early on that available support for families was extremely variable across the UK and in England specifically, although some regions had more services than others, these were still minimal.
The available information on these websites included support groups for the injured person, and lots of practical support for help with finance and benefits and legal advice.
However, services did not commonly appear to explicitly include families in their offer. Where family support, information or advice, was included this was often in small print or out of plain site, several pages into the website.
The consequence of this was that support for families was not easy to find.
Organisations that offered support for children after ABI were also scarce, but where they did exist, these were often more family orientated. An interesting finding of the search was that there was very little evidence of any therapy or counselling specifically for families after ABI.
The next search focused on NHS provision for families after brain injury, again Sara concentrated on England in her online search.
This time Sara found that families appeared to be more included at both inpatient, and outpatient stages in the patient journey. In contrast, community services appeared more sporadic in their inclusion of family on their web pages.
NHS services were consistent in signposting to community brain injury organisations; however, many of these were not explicitly offering support/information to families as described above.
The NHS did seem to have strong regional offers of education, where family members are invited to learn about brain injury, but again very little about understanding the impact of brain injury on themselves or offering of tailored counselling/therapeutic interventions.
Seemingly there was even less available for those whose injured family member had been discharged from NHS care into the community.
Sara quickly felt ‘stuck in a loop’ trying to find information and services that may personally benefit a family member after ABI.
Through the searching process, Sara had felt a sense of abandonment and frustration in her role as she explored navigating the services available to family members.
Sara was really trying to understand how families might search for information and what might be happening for them psychologically and emotionally as they navigate their way through this traumatic life experience.
This led Sara to keep a reflective diary to record her experiences during her research.
It quickly became apparent that this was an exhausting, repetitive and isolating experience. With regular disappointment and an overwhelming sense of uselessness, the more Sara searched through the internet, the more traumatic the experience became.
Sara explored searching at different times of the day, thinking about when family members might be able to carry out their own searches.
Many services were only available during office hours, which made her question how that may work for families who may be caring full time and may only be able to research and make enquiries out of normal working hours.
Everything just seemed like hard work, but should it really be that difficult?
It took an enormous amount of energy to keep going even though there was a real sense of the invisibleness of family members.
Sara’s experience really gave her a deeper understanding of some of the challenges families face when looking for support.
At the event Sara presented a word cloud produced from the entries in her reflective diary. The words in this word cloud resonated with many in the audience as it strongly identified with their experiences and may be why so many share a felt sense of being alone and there being a lack of support for families after ABI.
Talking Heads
The event moved on with a series of short videos from health professionals about the importance of including family in the ABI pathway.
Contributors to this section were from a range of professions including rehabilitation, nursing, clinical psychology, and brain injury case management, providing a multi-disciplinary perspective of the care journey.
The Talking Heads videos provided an excellent insight into current best practice, informing attendees of not only the challenges that health professionals face on this family journey, but the methods and approaches they use to overcome them.
We have reviewed the information shared in these videos and compiled a summary of recommendations to support those working with family members affected by ABI.
With thanks to the contributors Claire Clarke, Hannah Williamson, Claire Sweasey, John Ling, Dr Freddie Byrne and Mark Holloway, 5 key themes were identified: recognising the impact on families, fostering hope, family inclusion, fostering a positive relationship between families and professionals and best practice in supporting families.
1) Recognising the impact on families
It is important to recognise the profound impact that an ABI has on the family and that family members may be experiencing a feeling of loss. This may be in the form of a loss of future plans and goals, loss in intimacy or a change in relationship dynamics. Remember that different family members are not at the same place at the same time. Each individual processes the events in their own way, at their own pace.
2) Family Inclusion
Many professionals recognise that outcomes are often better when professionals and families are able to work together. Working collaboratively ensures everyone feels supported and included and may provide better outcomes for the future for the individual and their family.
Get to know the family and the client, as individuals and as a whole. It is helpful to work with families to understand what was important to them and their loved one pre-ABI and what is important now, post-ABI. Finally, Rehabilitation can be creative and inclusive of families. It can be beneficial to focus activities around re-finding fun, joy and a sense of connection between family members.
3) Fostering hope
Family members frequently say that they need hope as it gives them something to hold on to, it enables them to keep going each day and supports their resilience. Our role as professionals is not to deny the hope, nor to encourage ‘unrealistic expectations’, but to help families cope by holding on to hope. This hope could be in the form of a hopefulness that there are new activities and goals that can attained after ABI.
4) Fostering positive relationships between families and professionals
Listening and communicating with family members helps to build a strong relationship and encourages trust in professionals and the trust in the rehabilitation journey. Take time to build a positive alliance with the families, help them feel heard, respected, and included. Remember that we (professionals) also become a part of the care system around the family, so the type of relationship we form with families and the patient, influence their views of care, outcomes, their journey.
Get to know the patient and understand who they are as a person. Patients with an ABI can sometimes display behaviours out of character and families find it important that professionals show an understanding of this being an ‘ABI’ behaviour and not a ‘them’ behaviour. Acknowledgement and understanding of the patient’s personhood helps relatives feel respected and fosters trust in your working relationship.
5) Best practice in supporting families.
Acknowledge that families have been through an emotionally intensive period of uncertainty; providing consistency and continuity to a family is helpful at such an uncertain time. Families can also feel disconnected and become distant from existing support systems as they feel that others ‘do not understand’ their experiences so it is important to keep an eye out for signs of isolation and encourage family members to look after themselves; encourage self-care and compassion.
After ABI, families are launched into a world of medical terminology which can be a shock to the families. Unfamiliar language and over-medicalised terminology can cause considerable confusion and distress, it is helpful to be mindful of the language we are using.
The way ahead
Dr Aly Norman closed the event with a short presentation on Anchor Point’s hopes for the new ABI strategy and our contribution to the call for evidence.
Importantly Anchor Point have continued to lobby for family centred approaches within the ABI pathway and for family’s needs to be recognised and supported in their own right, and not simply so they can continue to care for their injured relative.
Until the Government and wider society understand the unique needs of this vulnerable population Anchor Point’s mission, to drive change, will continue.
Conclusion
Anchor Point’s inaugural event was a moving and inspirational event ending with a call to arms to bring about the much-needed change in the support for families after ABI. Anchor Point will continue to collaborate with all those in the ABI network to achieve its goals.
If you would like to join these efforts by joining a working group, or just staying up to date with activities please email anchorpoint@ukabif.org.uk.
Author details:
Kirsty Simpson, BSc (Hons), MSc
K.simpson21@unimail.derby.ac.uk
PhD student at University of Derby
Sara Rose BA Joint honours, MA
Registered Dance Movement Psychotherapist (RDMP)
S.rose8@unimail.derby.ac.uk
PhD student at University of Derby
Amy Harrison, BSc (Hons), MSc
Amy.Harrison2@mpft.nhs.uk
Trainee Clinical Psychologist, Midlands Partnership University NHS Foundation Trust
