The Hidden Harms: Experiences of Medical Traumatic Stress Among Parents of Children with Medical Complexity

Background: When an individual is seriously ill, they may experience medical traumatic stress (MTS). This psychological and physiological reaction relates, not only to the illness itself, but also to the associated pain, medical procedures and treatment experiences. MTS can affect an ill child as well as family members and caregivers. When severe or prolonged, MTS can manifest in post-traumatic stress symptoms (PTSS) such as re-experiencing, avoidance and hypervigilance. Recurrent MTS may be particularly detrimental and could commonly occur in children with medical complexity (CMC) and their caregivers who cannot avoid repeated interactions with the healthcare system. There is no evidence in the existing literature about this impact of recurrent MTS. This study describes experiences of MTS, as well as relevant contributing factors, from the perspective of parents of CMC.

Methods: Parents of CMC were recruited through purposive and snowball sampling using social media and parent groups. Virtual semi-structured interviews were utilized to elicit participant’s recollection of “traumatic experiences that occurred in a healthcare setting.” Reflexive thematic analysis was conducted through reading and re-reading transcripts, generating and revising codes and creating and reviewing themes. Member checking through one-on-one and focus group discussions with participants further validated the themes. A table of participant suggestions on strategies to mitigate MTS in CMC and caregivers was also created.

Results: Twenty-two parents (20 mothers and 2 fathers) completed the interview. The participants ranged in age from 31 to 67 and their children from 1 to 22 years. Three different provinces were represented as well as both urban and rural communities. The children had a variety of underlying conditions but all had significant medical fragility. There were numerous factors aside from the objective severity of their child’s condition that contributed to MTS. The particular elements that influenced MTS in these parents related to three major themes: (1) the unique context of being a parent of a child with medical complexity; (2) the relationships and interactions between parents and clinicians; and (3) the overall organization of the healthcare system. The experience of repeated traumatic encounters by virtue of their child’s ongoing fragility and need for medical care is a key concept evident in all themes.

Conclusion: These results demonstrate multiple factors that contribute to MTS in parents of CMC. Importantly, many of these stem from relational and systemic challenges that CMC and their families experience. However, it is also evident that even in the most challenging circumstances, MTS could be ameliorated through thoughtful design of healthcare processes and education of healthcare providers. Parents of CMC need dedicated trauma-informed interventions due to their repeated exposure to MTS.