Connecting with other people with burns and peer support

This section covers:

  • Opportunities and preferences about meeting others with burns
  • Charities and burn support groups
  • Burns camps for children and families
  • Role models and media, including social media

Speaking to others with a burn was important to some people we talked to and could be a key aspect of coping with the impact of a burn. As Saffron found, meeting others could help with “realising that you’re not alone” and having a “sense of belongingness”.

Opportunities and preferences about meeting others

Some, like Jessica, had met others with burns whilst they (or their child) were in hospital. However, outside of this setting, it could be difficult to meet others with personal experiences of burns. Charities, support groups, burns camps, and social media were some of the key ways that people with burn injuries connected with each other.

Soon after her burn, Raffaella wasn’t able to attend any in-person support groups because of Covid-19 restrictions. At first, she felt like the only person with a burn injury.

Mercy said that events that include family members of those with burns are important because they can sometimes struggle too. She had attended some run by a US charity, The Phoenix Society for Burn Survivors.

Jeff found talking to a psychologist to be a helpful way of managing his mental health.

A few of the people we spoke to had never accessed support from charities or other groups. Some said this was because the support from friends and family was “enough”. Others said their burn was “so long ago” that they felt there would be no benefit to accessing support now, and there had not been much support widely available at the time. Sarah said she didn’t necessarily want to have a conversation with someone else with burns, but that reading about their experiences could be helpful.

Some people found it difficult to find others with burn injuries and experiences that were similar to their own. Some worried about their own injuries being seen as ‘small’ or ‘minor’ by others with burns; whilst others worried that they would stand out as the person with the ‘most severe’ injuries. Sabrina had heard about a charity that ran events for children with burns but “I didn’t feel burnt enough to go. I felt like if I went, I’d be like a phony there because everyone else was a lot more burnt than me”.

Sinead, whose daughter, Elizabeth, has burns, said it has been difficult to find someone that she can relate to in terms of the specifics of shared burn injuries.

Charities and burn support groups

Many of the people we spoke to had used support organisations. This included some specific to burn injuries as well as those more broadly related to different appearances or mental health. Mercy told us that the U.K. charity Changing Faces had been able to refer her to other charities and support services she may have benefitted from.

Raffaella received support from The Katie Piper Foundation.

Helen Y attended a local support group organised by a clinical psychologist.

Some people, like Sarah and Charlotte, had used an online chat forum run by Dan’s Fund For Burns, where they would speak to other people who had been affected by burn injuries. Sarah explained, “it’s the only place that I’d found where you can speak to anyone else that had been burnt, it’s quite a relaxed way to speak to other people online”. A couple of people said that they would join the chat forum to give advice and support to others, but did not feel that they themselves needed the support.

Sarah used the Dan’s Fund For Burns online forum to speak to other people with burn injuries.

For others, like Mercy, being able to attend a burns support event in person and meet others in real life was really important. Gary had been back to the hospital where he was treated to meet current patients with burns and hoped that “I just made them see that it’s ok, they’re in the situation that they are but it’s not the end and they can still do anything they want to do”.

For some, support from burns charities had been a large part of their life. In some cases, people who had been involved with charities as a child continued their involvement into adulthood. Sometimes people would volunteer for the same charities that helped them as a child in a way of “giving back” to the burns community.

Burns camps for children and families

Many of the people we spoke to who were burnt as children had accessed charities which specifically offered support and advice to those under the age of 18, such as Children’s Burns Trust. These charities would often host events, workshops, and camps where young people who had been burnt (and their families) could build friendships and participate in fun activities. Some people told us that they had felt nervous before attending a camp or group for the first time, but they had been pleased that they had gone.

Raiche told us that, at the burns camps, “being different was like your super-power” and speaking to the other young people like “therapy”. Kate explained how her confidence grew through speaking to new people at the camps and believed she would be “more introverted now” had she not attended. For Saffron, this peer support offered a “sounding board but also provided me with other coping strategies from those who’ve been there and lived it”.

Saffron made “close bonds” with the other young people at the burns camps because of the “unique experience” of having a burn injury.

Natasha spoke about her experience of joining her local burns club where she had made “so many friends” who were “now my support group, in a sense”. Kate also found attending the burns camps very beneficial. Although she was nervous at first, after attending she said she “absolutely loved it”. Talking about the benefit of meeting other young people with burns, Natasha said “it’s just about realising that it’s not that big of a deal in a way”.

Saffron said that burns camps helped her with her emotional recovery.

Kate was initially nervous to attend a burns camp. Her mum encouraged her to attend and she “absolutely loved it”.

Raiche said that everyone at the burns camps, regardless of other differences, “clicked” because they had their scars in common.

Sinead attended a family burns camp and said it was the only time she had been “surrounded by people who’ve had similar experiences”. She found this was a beneficial experience for the whole family and said it was important that some events involve “the whole family”.

Sinead and her family attended a family burns camp.

Role models and media, including social media

For some, seeing and hearing from others with burns in the media offered them support at the same time as raising awareness of the impact of burn injuries and how to prevent and treat them. This included television, books, and social media. Some people we spoke to hoped to be role models for others by sharing their own experiences.

India talks about some of the resources she found helpful growing up, including an autobiography.

Social media was used by some people for peer support and advice. Social media sites such as Facebook, Instagram, TikTok, and Twitter were platforms mentioned by people we interviewed.

Some used their social media to let friends and followers know about their burn injury and their recovery. Rhian used her professional Instagram account to share with her customers that she had been burnt and to document her recovery.

Justyn uses his social media platform to share the “ups and downs” of living with a burn.

Charlotte used Facebook to chat to another person who had sustained a burn injury.

As a Black woman with burns, Raiche is passionate about diverse representation of different people in the media and uses her social media platform to further this.

A few people spoke about the negative aspects of using social media, such as seeing unrealistic and filtered images. Claire said that Instagram can be “quite fake” and “very looks-obsessed” where “everything looks so perfect”. For this reason, she decided to post a photo of herself in a bikini to “represent a different kind of body”, “fight” the assumption that “life is perfect” and promote body positivity.

Saffron said following other people who “look like me” helps her and makes burn injuries “more normal”.

Sometimes social media was used as a way to raise awareness about the impact of burn injuries. A couple of people told us they would share posts around UK National Burns Awareness Day (usually in October), American Burns Awareness Week (usually in February), and Bonfire/Fireworks Night in the UK (5th November), as a time to reflect and share first-aid advice.

In addition to charity and peer support, some people also told us about support from their friends, families and partners, and their experiences of psychotherapy and professional counselling after a burn.

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