Supporting Families After Brain Injury — Icanho, Shaftesbury
By Specialist Social Worker Sally List and Specialist Speech and Language Therapist Claire Baker
Shaftesbury Icanho specialises in acquired brain injury community rehabilitation for adults living across Suffolk who have sustained an acquired brain injury or stroke. We are a multi-disciplinary team that aims to provide a “whole family approach” for the rehabilitation of the person who has experienced the brain injury.
Brain injury impacts the whole family and many people who have a brain injury are parenting children. Research has shown that children and young people with a parent or carer who has experienced a brain injury may have significantly more emotional and behavioural issues than children within the general population (Daisley and Tams, 2008., Kieffer- Kristensen et al, 2013).
Our communication with families involves encouraging adults within the family to model positive coping strategies for children, encouraging the family to try to keep children’s daily routines as normal as possible and to encourage the family to involve the wider family network if there is one and the children’s school in what is happening — so that additional support may be provided if or when needed.
Psycho-education groups
Over the past twelve years Icanho has developed and delivered psycho-education groups for children and young people. The aim of these groups was to provide information about brain injury that was tailored for their age and understanding. We have sought to create a safe and welcoming space for the young people to share their experiences and struggles, with opportunities for listening to others about the impact upon them of a parent/carer with a brain injury.
A significant number of these young people fed back their relief at being able to meet with other young people where a parent has a brain injury and how this has enabled them to feel less isolated.
The referral process for the psycho-education group sessions involved discussions with the parents which was paramount. The groups usually ran up to twice each year, with the more recent sibling-group sessions able to run more flexibly through the year. The numbers of young people have varied across different years between twelve to fifteen within a year. The age ranges for the groups were seven to eleven years with a different group for twelve to seventeen year old young people.
Brain Injury Education sessions with siblings or with a parent/carer — Changing the pattern of delivering the sessions
A significant shift has been noted across the past two years where parents have increasingly requested for their children to have access to information around brain injury within a sibling group or with a parent/carer rather than a wider group of young people across various families. It is unclear why this change has occurred whilst this has impacted upon the delivery of the groups. For a small minority of children there would be clear reasons for the brain injury information to be delivered outside of a group due to specific issues for the child or their parent(s).
The delivery of the brain injury education sessions has been delivered within this new model rather than groups — with these changes currently being evaluated. There were ten young people supported across 2023. The self-identified gender of attendees has been male and female with similar numbers of each over the past two years.
The young people are encouraged to share what has changed within their families and themselves — as well as for them to share what they are finding difficulty with now. To acknowledge the profound changes, feelings of loss and other strong feelings each of the young people may be feeling at times as a result of their parent/carer with a brain injury — and for them to explore and develop their own emotional first aid toolkit for support and empowerment.
Interactive and digital quiz games have been developed to enhance the engagement of young people around the questions and answers session about brain injury and how they feel theirr parent has changed since sustaining this injury, as well as the parent who has not sustained a brain injury.
The wider support network within school, with their friends, clubs and their wider family is explored with a take home pack of resources around brain injury provided for each child and young person. The clear message that they did not cause their parent’s brain injury and are not responsible for this are shared with them within the session.
Feedback from young people
Evaluation of these brain injury education sessions has been positive — with comments such as “I had no one else to talk to about this and I understand why my Mum is so tired now”, and “I thought it was my fault because my Dad is so different after his accident”. Many young people have highlighted how they valued being able to share their feelings of how they were trying to cope with the changes within all of the family relationships since their parent sustained the brain injury.
Parents of these young people have similarly provided positive feedback about how the young person at home relayed what they had learnt and shared within the psycho-education sessions.
It is important to acknowledge the feedback by some young people around how their relationship with the parent with a brain injury is not what they want — “I don’t like Dad now that he has had his stroke” and “I talk to my friends now, my Mum doesn’t help much”. Gathering the information about the family attachment patterns for the child and young person’s perspective can be challenging.
Available Resources
Whilst there are no nationally researched and accredited models or materials available (Tia and Dumas, 2015), the National Rehabilitation Hospital of Ireland has developed a useful resource for rehabilitation teams wanting to support child relatives of an adult with a brain injury, and the Icanho facilitators have found this resourse to be helpful.
There are a small number of books written for children and young people about when a parent or relative has a brain injury. Some are story books, others describe from a young person’s perspective how the brain injury for their relative affects them and all of their relationships. There is a relatively small variety of books with a range of diverse family patterns and cultures. Additionally there are a limited number of websites providing information for children and young people in this area.
The Icanho facilitators have found the Headway Ireland resources — including “A Teen’s Guide to Brain Injury” and “A Kid’s Guide to Brain Injury” to be useful. Additionally, Different Strokes charity has just published materials across a variety of age groups for children and young people. Jo Johnson’s book (2011) — “My Parent has a Brain Injury”, is a similarly useful resource.
Limitations
This brain injury psycho-education for young people has many limitations. Families are dynamic, complex and have many shapes (Moreno-Lopez et al. 2011). The psycho-education is designed to provide information and answer questions around brain injury, whilst also providing opportunities for the young people to share the impact upon them and their family of their parent’s brain injury. Finally, there are opportunities to highlight two or three situations at home that the young person may value exploring with input around enhanced coping strategies for them.
The psycho-education is delivered within one to two sessions. It has not been designed to be a longer-term intervention, or a therapeutic model. There may be issues highlighted by the young person, their parents or one of the rehab clinicians — and in the event of this there is feedback to the parents around signposting to appropriate agencies for support.
The planning process ensures a clear risk assessment process is undertaken with clear boundaries around identified and non-identified potential risks. For example, sharing information with statutory agencies where there may be issues around possible safeguarding or risk of harm issues (Holloway and Tyrrell, 2016). Guidelines for the feedback process from the psycho-education have been developed and shared with both the young people and their parents and appears to work well.
Learning Points
A review and evaluation of these psycho-education sessions is currently being undertaken by the facilitators which includes the processes involved in developing and delivering the psycho-education as well as seeking to gauge its effectiveness using feedback from the young people and their parents. Additional themes the facilitators have flagged are around how the parent with a brain injury may be interested in receiving input around supporting them with parenting strategies; how the non-injured parent may value additional support around information and coping strategies for the whole family; exploring whole family rehabilitation to continue to develop this model and how to access potential on-going information and support longer term for the young people.
How to ensure equity across the clients and families to access this support for children and young people is part of the evaluation — looking at issues around gender, race and ethnicity and class.
A Social Worker and a Speech and Language Therapist have facilitated the psycho-education over the past two years with comprehensive planning for each session in order to gain an understanding from each family around what is important for them and information around the attachment patterns. The facilitators have found that flexibility, being open to surprises and open to not knowing how the session may develop is crucial. Being clear that the remit for the sessions is psycho-education not therapy is clearly highlighted.
Giving space and time for young people to tell the story of what happened to their parent — how the brain injury happened, what happened next and then asking how things are now has been an important component of each session.
Using a variety of age and understanding-appropriate resources — visual, digital and kinetic in order to seek engagement with the different styles of learning has been key. Refreshments and snacks are provided.
Also the timing of potential brain injury information for children and young people — where this may need to be calibrated around how the rehabilitation is progressing for the client. We are looking at how to build in greater flexibility for children and young people and grand-children of clients to be able to access the sessions.
We would welcome feedback, questions and any enquiries around our psycho-education sessions and would be interested to hear of other initiatives around the country that are supporting children and young people with a parent or grand-parent who has an acquired brain injury or stroke.
References
Daisley, A. and Tams, R et al.(2008) The Facts: Head Injury Ch 10 — Helping Children Cope with Head Injury in the Family, pp. 121–130
Different Strokes Charity
Headway Brain Injury Services and Support, Ireland
Holloway, M and Clark-Wilson, J. (2020) Family Experience of Brain Injury: Surviving, Coping and Adjusting, Routledge
Holloway,M. and Tyrrell,L. (2016) Acquired Brain Injury, Parenting, Social Work and Rehabilitation: Supporting parents to support their children. Journal of Social Work in Disability and Rehabilitation
Kieffer- Kristensen, R. and Teasdale, T. et al (2013). Family matters: Parental acquired brain injury and child functioning. Neurorehabilitation 32 pp. 59–68
Moreno-Lopez, A. and Holttum, S. et a.l (2011). A grounded theory investigation of life experience and the role of social support for adolescent offspring after parental brain injury. Brain Injury, Vol 25, No 12. Pp. 1221–1233
National Rehabilitation Hospital, Dublin, Ireland
Tiar, V. and Dumas, J. (2015). Impact of parental acquired brain injury on children: Review of the literature and conceptual model. Brain Injury Early Online 1–1