Children are particularly vulnerable to burns. They are the 11th leading cause of child death at the age of 1–9 years and are the fifth most common cause of non-fatal childhood injuries.
Whilst many burns are minor and treated by front line NHS services, approximately 500 children under the age of 16 are admitted to hospital for specialist care every year in the UK.
When a child suffers a burn injury they face enormous pain, fear, and anxiety in response to the event and the treatment, but they are not the only ones distressed by the incident and procedures that follow. Parents can experience feelings of shock, guilt, and blame: the continuing emotional trauma resulting from a perceived failure to protect their child. Alongside the psychological consequences, parents of hospitalised children may also be struggling with the additional stress of having to divide their time to also meet the needs of any uninjured siblings. Despite this, parents hold a unique and integral role in the provision of their child’s care.
They are involved in decision making about their treatment and once discharged from hospital they carry out lengthy scar management routines. The support of parents can also impact psychosocial and physical recovery. Recovery and rehabilitation is time-consuming and can result in persistent distress due to the recollection of the event. But when families are involved with burns treatment, the child often copes much better long-term. Despite recommendations that patients and their families have the opportunity to access an age-appropriate burn support group, in the UK, provision of such support is limited.
At the Centre for Appearance Research, based at the University of the West of England, I have been investigating the experiences and support needs of parents since January 2016. Based on my findings, I am currently developing an online peer support resource specifically for parents of burn-injured children.
Peer support has long been recognised as an essential component of a supportive network for people facing adversity, built on a shared understanding and reciprocity between those involved. My research findings to date have suggested that many parents would value specialised coping information, perspectives, and experiential knowledge that peers possess, but there can be barriers to accessing support. These include the guilt and shame perceived by parents, the painful experience recalling and recounting the events, the time it takes to care for their injured child and attend the many necessary hospital appointments, the financial impact of this, and the distance that they might have to travel to access support.
Parents can be blinkered by the needs of their child, focusing on the child’s recovery and putting their own needs last. Creating an online support provision may remove some of the barriers associated with accessing face-to-face support and I am seeking parents who could evaluate such a supportive resource at tinyurl.com/peersupportforparents
Whilst peer support may be valuable to parents, it is important to note that it is not a panacea. It is a unique care model based on shared experience and should not be considered a less expensive alternative to professional care. The sometimes complex psychosocial needs of families who have suffered burns, unexplored support needs within the research conducted to date, and an under-representation of peer support in the literature have prevented this mode of support being adequately developed by burns services and charities. I hope that my work can begin to change this for these services and the families they serve.
This work led to the creation of a website, designed with parents and carers, specifically to support families of burn-injured children.