Kristina Thomas, Senior Research Fellow and Anna Collins, Research Fellow, Centre for Palliative Care, St Vincent’s Hospital Melbourne, Australia, explain the background to their longer article selected as ‘Editor’s choice’ in the December issue of Palliative Medicine.
We have been researching the psychological and social impacts of being a carer of a person receiving palliative care for many years, but our focus has previously been on adults. So what are the impacts when the person receiving care is a child with life-limiting illness?
When the opportunity arose to do a study with one of the local children’s hospices, we were both very interested and jumped on board. Every year, this statewide service provides support to more than 800 families who have a child living with a disability or illness that will shorten their life. This is devastating for parents and brings a whole range of new issues and challenges. But very little has been published in Australia and internationally on what it is like to be a parent whose child has a life-limiting condition and how it impacts on one’s life.
We started by sending out a questionnaire to parents who were registered at the hospice. Despite the already high demands on their time, it was telling that many were very happy to be involved. It was, after all, a topic they were passionate about and living with every day. We also followed up with interviews with some interested parents to elicit further information about their physical, social and psychological lives.
There were so many insightful comments and harrowing stories, but also examples of strength and resilience. One theme to emerge was the extreme physical and social isolation from their community, as one parent said, “I often feel like I am trapped inside the house”. Parents commonly had to give up work or reduce the hours they worked so they could care for their child. They needed to be able to drop everything if their child had a health emergency.
Probably the most significant finding from the study was the impact of caring on the parent’s health. Caring for a child 24/7 led to significant fatigue and stress and impacted on both physical and mental health. Parents prioritised the child’s health to the detriment of their own. Even with the support of palliative care services, more help was needed by parents to ensure their own wellbeing.
But what is it like to live with the knowledge that your child will die? We were struck by the range of emotions that parents expressed including grief, helplessness, uncertainty about when and how their child would die, to relief that the suffering of their child would end. Many parents chose to focus on the present, given an unknown or daunting future. One parent said, “I don’t like to think about [the future] because it’s not going to be good. I think it’s just going to get harder.”
Despite the immense difficulties, we also identified that parents acquired great meaning and purpose from caring for their child, including a new capacity to see what’s important. They described an inner resiliency and a changed perspective about what is meaningful in life. Undoubtedly this aspect of carers’ lived experiences is something we want to share, to recognise the transformative potential and immense personal satisfaction that can come from embracing a caregiving role.
We hope that this research may help to ensure the carer voice is well heard by all paediatric palliative care service providers, but perhaps especially by our governments and funders. Greater attention to caregivers’ health and wellbeing must be a continued priority and more tailored supports are required to assist parents to cope with the physical and emotional demands of caring for child with a life-limiting illness.
This blog post relates to the longer article, ‘Lived experiences of parents caring for a child with a life-limiting condition in Australia: A Qualitative Study’ by Anna Collins, Nicole Hennessy-Anderson, Sarah Hosking, Jenny Hynson, Cheryl Remedios, and Kristina Thomas, published in Palliative Medicine 2016, Vol. 30(10) 30: 950-959, first published on March 7, 2016 doi: 10.1177/0269216316634245.
Download your free copy of this month’s Editor’s Choice article here. palliativemedicine_2016_30_10
You can also download a free copy from the EAPC website
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Read earlier Editor’s Choice posts on the EAPC Blog