‘What would my 16-year-old self have needed when my dad was in hospital?’

When I was 16, my dad had a stroke and passed away after a few hours of being in a coma. I was shown a CT scan by a doctor who was trying to explain what had happened. I remember seeing the scan, and a huge white blob on my dad's brain which I thought was a tumour. I couldn't remember anything the doctor said the day after, and never asked again. For years, I told people my dad had a brain tumour which caused him to pass away suddenly. Only recently I found out it wasn't a tumour at all, but a stroke. 

Arguably, this information doesn't change much about the situation. However, it had a huge impact on the narrative I told myself about my dad's life and sudden death and I wonder if it played a small role in my career choice, seven years later. 

In 2022, I began work as an Assistant Psychologist in a brain injury team at a major trauma centre in London. A large part of my role involves co-running a family project aiming to improve the quality of support that families receive after their loved one experiences a brain injury, such as from a car accident or a bleed from an aneurysm. This is my after completing my undergraduate and master's degrees and experiencing life in a fast-paced acute hospital setting is certainly a steep learning curve!

Meeting families at the most critical time

To understand how we can best support families, my role involves meeting them to introduce our support pathway and organise family meetings for those who require additional support. These are typically people with young children, social complexities or mental health difficulties. At first, this part of my role felt incredibly stressful; families were often too distressed to engage with me in the early stages of their loved one's care, let alone fill out a questionnaire about what they currently needed. 

Seeing patients and family members at potentially the most stressful point of their lives often left me feeling helpless. I felt uncomfortable meeting families as a non-medical professional, believing that during this acute stage they would only be interested in useful medical updates. 

But then I started to ask myself, what would my 16-year-old-self have needed when my dad was in hospital before he died? I definitely wouldn't have been able to process a five-minute medical update at the time. In addition, no kind words or empathy would have made a difference but what would have been helpful was a space to process the information, a check in of my understanding and support with next steps. I feel proud to work in a service where these aspects of family support are considered important. In our team, the specialist nurses often show family members scans of their loved one's brain to help them understand their brain injury. My team are brilliant at breaking down information and explaining it in a simple way, particularly considering the diversity in education and health literacy across London boroughs. This also includes having multiple meetings, repeating information and checking family members' understandings of the information.

Looking back, my experience surrounding my dad's death contributed to my interest in working with families going through life-changing events. From the beginning, my role has centered around families and the huge impact that brain injury has on everyone around the individual. Although our service supports patients who survive intensive care, many have severe injuries with guarded prognoses in the early stages. 

Moreover, families often report feeling overwhelmed during the period in hospital. They often receive a lot of medical information which is not always translated into layman's terms. This is exacerbated by vague timelines and uncertainty around the next steps, resulting in a period of worry and confusion. Over time, our service has evolved to provide a support pathway which aims to meet family's expressed needs – whether that is reiterating medical information, providing emotional support or signposting to other services. For more severe cases, it involves discussions around best interest decisions for patients who cannot advocate for themselves. Our 'open door' policy means we encourage families to get in touch during or after the hospital stay if they need support.    

Growing around grief

I often reflect on how it would've have been for me if my dad survived and stayed in hospital for a longer period. I would have been attending meetings and having discussions about his care. Thinking of the CT scan I saw at the hospital, my knowledge of brain injury and radiology has taught me that if my dad had survived, he likely would've been severely disabled and would need a lot of care after discharge from hospital. When considering his best interests, I feel that he would've preferred this outcome, rather than being dependent on family or carers for the rest of his life. 

The knowledge I have gained from my role brings me small comfort when my grief is difficult to manage. My memories of my dad are of 'him' right until the end, undoubtedly how he would've liked to be remembered and celebrated. 

As Tonkin's 1996 model of grief suggests, grief does not get 'smaller' over time, but we grow around our grief as time goes on. Though difficult to accept, his death allowed me to leave home and go to university, to start my professional career in London and allow my mum to rebuild her life after incredible hardship. The opportunities I have had in the last seven years, including my current role, have helped me manage my grief whilst growing around it.

The importance of a support network

For other patients who survive and are given another chance, my role has taught me the importance of systemic work and the positive effects of a supportive network along the road to rebuilding life back in the community. The diversity of London brings families from all walks of life, exposing me to just about every family dynamic I can think of. This has sparked an interest in gaining more experience in systemic therapy, and reinforces the collectivist Asian culture I have been raised in, where family is a top priority. 

The role doesn't come without challenges; families are not always in harmony, and the role can involve managing discussions between different family members who don't want to sit in the same room together. This can take up limited time and resources within the team, resulting in over-focus on some complex families to the detriment of others. 

Just like our team, others in the NHS are often stretched  and may have no capacity for additional work. As psychologists, we are taught the importance of 'systems' and holistic practice, but I believe this framework should extend to general healthcare practice. Within psychology, we play an important role in fostering relationships and creating safe spaces for service users, and their families.  There may be a role for psychologists in guiding hospital teams to better support systems around a patient, as well as involvement in service planning to embed this into usual practice across different services. 

I hope that my experiences can highlight the importance of continually reflecting on our own ways of giving information when working with service users. For example, whether we allow enough time for information processing during meetings, whether we consistently check in to ensure shared understanding and regularly consider the best way we can support families in the midst of distress. 

So far, my role has been incredibly rewarding and has provided me with experiences that have shaped me as a person, as well as an aspiring psychologist. However, at times, the role has brought my grief into the workplace, resulting in feeling emotionally burned out, stressed, and finding it difficult to switch off after 5pm. Over the last year, I have found that keeping a regular yoga practice has been incredibly beneficial, providing me with a space to safely reflect and manage my emotions outside of clinical supervision sessions. 

I hope that others working in high pressure and emotionally charged environments prioritise their own self-care, and reach out to other colleagues who may need encouragement to take much needed time to recharge. As healthcare professionals, we often give so much to our roles, at the detriment to our own wellbeing. We constantly support and advocate for our patients and their families, but it is vital that we turn inward and look after ourselves.