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    • Mauriche Van der Merwe
      Participant
      Post count: 6

      If there is one thing I have noticed, is that children are often mislabelled as small adults. This is one of the biggest mistakes made by healthcare professionals as they expect a child of any age to often react as an adult, which is never the case. This often leads to the “They aren’t crying so they are fine” mentality. With my daughter, I have had to navigate her pain, discomfort and intolerance to the doctor on behalf of her. They usually missed the clenched fists, head shaking, attention seeking behaviour she often displayed when being evaluated. When she could start speaking and loudly voiced her discomfort by saying “NO” and “DONE” it was brushed off as some new trick she learned. Furthermore, we have never been evaluated for spiritual, psychosocial or psychological distress.
      I feel healthcare professionals (especially in paediatrics) are not fully or competently trained in the different assessment tools needed to evaluate a child and their family holistically. Similarly, they are not proficiently trained in palliative care as a whole.
      Too often, they rely on blood tests, scans and procedures to tell them what’s wrong instead of listening to the child and their parents. Parents are not seen as the experts when it comes to a child’s holistic health.

      My daughter had extreme pain, and was continually prescribed Panado, even after invasive procedures. When I voiced my concerns saying it’s not working and my daughter’s cry is not one of discomfort, but of pain, the question of “How would you know” or “It’s normal to be in pain after surgery” was often directed my way.

      I think parents of palliative care children should also be trained in especially the pain assessment tools so they can correctly advocate for their children. It all begins at home, and who better to know what’s going on with a child than the people spending 24 hours a day with them.

    • Sue Boucher
      Keymaster
      Post count: 21

      You are so right, Mauriche. Nobody knows their own child better than a parent. Especially a parent who spends 24/7 caring for their child. The paternalistic approach often adopted by some healthcare professionals can lead to parents feeling unheard and frustrated and also lead to devastating consequences. I’m so sorry you had to experience what you did, while caring for Lirie.

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