In my practice, I often encounter parents who have been traumatised by the experience of raising a child with complex conditions. Whether dealing with their child’s medical conditions, self-harm, suicidal tendencies, or aggression, the emotional toll on parents can be profound.
Mental health professionals often use questionnaires to assess potential Post Traumatic Stress Disorder (PTSD). These include questions about whether you find yourself reliving stressful experiences and avoiding reminders of the trauma. However, the ongoing nature of trauma in the lives of many parent carers challenges the adequacy of the term "Post Traumatic Stress Disorder." For parent carers it is rarely possible to avoid external reminders of a stressful experience when it is your child’s ongoing needs that are associated with the trauma. For example, when a parent has experienced trauma at seeing their child undergo invasive procedures in hospital and yet they need to return to the hospital regularly with their child for check-ups.
The term "Post Traumatic Stress Disorder" fails to encapsulate the continuous and relentless nature of the trauma experienced by many parents caring for children with complex needs—be they behavioural, emotional, or physical needs. Instead, a more fitting descriptor might be "Past, Present, and Predicted Traumatic Stress Disorder" (PPPTSD), acknowledging the ongoing and unavoidable nature of the trauma.
I had the opportunity to share this concept at the BACP CYP & Families conference in London in March 2023 and in an article co-authored by myself, Dr. Joanna Griffin founder of the Affinity Hub and author of 'Day by Day: Emotional Wellbeing in Parents of Disabled Children', Dr. Megan Yakeley, and Murmuration Community Therapy co-founders Naomi Bonger and Poppy Villierezz.
As stated in our article, the term PPPTSD does not pathologise but seeks to offer a nuanced description that combines personal and professional experiences. A more nuanced understanding of these experiences, both by parent carers and professionals, can lead to better outcomes for parents and families.
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You can read our article here:
This article first appeared in the December 2023 issue of BACP Children, Young People & Families Journal published by the British Association for Counselling and Psychotherapy. https://www.bacp.co.uk/bacp-journals/bacp-children-young-people-and-families-journal/ ©BACP 2023.