An exhibition of photographs taken by parents who receive support from East Anglia’s Children’s Hospices (EACH) is addressing misconceptions about children’s hospice care.
Five parents have taken the photographs in The H-Word exhibition: Charlotte Markham, whose son Elliot died after just a few hours in 2012; Nikki, Louise Ormrod, and Sophie Munnery who all have children currently receiving care from EACH; and Claudia Kelly, whose family has accessed support from EACH.
Explaining her reasons for taking part, Sophie said: “This was an excellent opportunity to be involved with a subject clearly very important to us all and it allowed me to express some of the emotions that we, as parents of children with life-limiting conditions, experience. I found being part of this to have a very positive impact on my wellbeing and particularly enjoyed being able to share our experience of EACH in such a positive way.”
The H-Word is on display until the end of the month in March and Whittlesey libraries following several exhibitions around the county last year that received overwhelmingly positive feedback as well as coverage on BBC Look East and ITV Anglia News.
Last August a survey by YouGov conducted on behalf of children’s palliative care charity Together for Short Lives found that one in three people knew someone caring for a child with a life-threatening condition, but felt too uncomfortable to talk to them about it.
It also found that one in five people do not know what children’s hospices do and what children’s palliative care means. Of those who said they did, 13 per cent used adjectives like “sad”, “depressing” and “unhappy”; 20 per cent described children’s hospices as being about end of life care and death, and only 7 per cent used positive words such as “hope”, “fun” and “comforting”.
The research confirmed that there is a great deal of stigma and fear around the word “hospice”, which can be a barrier for families to access their services.
EACH found an increase in people’s positive perceptions of children’s hospices after viewing the exhibition. Feedback from visitors showed that 68 per cent said they would feel comfortable talking to someone caring for a child with a life-threatening condition after looking round the display.
There was also a noticeable change in the language people said they would use having seen the photos, with a lot more choosing to use adjectives such as “fun” and “happy” rather than “scary” and “upsetting”.
Rachel Wright, EACH Family Communications Co-ordinator, said: “It was so pleasing to see the impact The H-Word had on what visitors thought about children’s hospices and we’re delighted to be taking it to other places in which we offer care and support, where we hope to see similar myth-busting results.
“False perceptions around the word “hospice” are what lead to families looking after a child with a life-threatening condition to be too scared to reach out for support and also to people feeling uncomfortable about talking to those families about their situation, and this can compound a family’s feelings of loneliness and isolation during what is likely the toughest period of their lives.
“This exhibition showcases the realities of children’s hospice care through the eyes of those who have first-hand experience and, we believe, is the first of its kind. Certainly, the idea received fantastic feedback from other children’s hospices around the UK.”
For more information visit EACH: The H-Word
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