While on leave, I am taking the opportunity to attend the paediatric palliative care conference in Wales. I am looking forward to hearing from the keynote speakers on the topic, 'Science, Meaning and Morality: the Palliative Package. Professor Myra Bluebond-Langner, is one of the keynote speakers and someone I have respected for many years for her research involving children with serious illnesses.
Some of the topics explored at the conference are, 'Spirituality in children - myth or reality'; 'Children and Young People's Voices in Living and Dying - how children express their knowledge of impending death'; and 'Knowledge, Self-determination in Children', just to name a few of the sessions.
We know that life is fragile, we hear that term bandied about with sometimes I think little understanding of what this actually means. Unless of course, you are someone who LIVES with the reality of a fragile life. We do not like to talk about this as a society, as it is too painful Those who live with serious illness and/or disability often express they are unable to talk about their fears and anxieties.
We get very good at 'protecting' each other and ourselves from not saying things that may evoke feelings of discomfort, anxiety, fear, sadness and anything other than what is perceived to be positive. At times this silences those that do want to talk about their situation and what it means for them.
Over the many years of caring for children, I have facilitated 'difficult' conversations between children and others, whether that be family members or health professionals. It can be difficult for children to let their parents and their health team know what it is that they need or require, particualrly if it is in regard to their vulnerability as their disease progresses.
Professor Myra Bluebond-Langner is known for the vast research she has completed regarding what is important for children, especially at the end stage of their lives. Her book, 'Private Lives of Dying Children' was a research project that highlighted many issues that children are faced with regarding their own mortality, and the barriers created in communication by the 'protection' of those around them.
My own thesis work - 'Children Matter: What is important to the child living with a life-threatening illness' highlights the difficulty children at times have in having their voices heard regarding what their needs may be. The way we communicate with children is dependant on how comfortable we feel ourselves at times in regard to the delicate issues regarding life and death.
We are aware that communicating with children is different to that of adults, and yet there are still times when children are perceived to be 'little adults' by some health providers who have little experience with children. There are still sadly some health professionals who think it is ok to make decisions and give treatments to children without their input. There are many ways to include children even if they are too young to be actively involved with the direct decision making. In my experience I have found that there is still so much to be learnt regarding the care of the seriously ill child.
It is thanks to people like Professor Myra Blueband-Langner and other leaders of paediatric palliative care that will also be in attendance at the conference who have made real inroads to the care children require and deserve in their own right. No longer is an adult model of care adapted to meet children's needs acceptable.
So yes, I am looking forward to this conference to network with like minded professionals, and leaders in paediatric palliative care. This has always been my specilal interest, and I hope to come back to New Zealand with new insights and a renewed energy to continue to 'carry and hold the light' for seriously ill children and their families..
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