Experiences of medical traumatic stress in parents of children with medical complexity

Abstract

Background and Objectives Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been explored. PMTS describes parents' reactions to their child's illness and medical treatment and can lead to post‐traumatic stress symptoms. This is the first study to describe the experiences and impact of PMTS among parents of CMC. Methods We conducted semi‐structured interviews with 22 parents of CMC. Reflexive thematic analysis was used to generate themes that described the experiences of PMTS and potential contributing factors in the healthcare setting. Themes were validated by study participants. Results Parents experienced a spectrum of events and circumstances that impacted PMTS. These corresponded to three major themes: (a) the distinctive context of being the parent of a CMC, (b) interactions with healthcare providers that can hurt or heal and (c) system factors that set the stage for trauma. The consequences of repeated PMTS were a common point of emphasis among all the themes. Parents identified numerous changes that could mitigate PMTS such as acknowledgement of trauma and provision of proactive mental health support. Conclusions Our study highlights the issue of PMTS among parents of CMC and presents opportunities to mitigate their traumatic experiences. Supporting the integration of trauma‐informed care practices, increasing awareness of PMTS and advocating for parental mental health services could better support parents and families.

Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada

“…57 Finally, the family-identified recommendations for a more collaborative, family-inclusive approach to respite services could be empowering, improving well-being for parents. 9 For families who received respite services, it was 'life-saving', while for others, limited or lack of respite care resulted in depletion of emotional, financial and social reserves representing an uphill battle, which many could not afford.…”

“…While there is no agreed on definition, here, we use the term CYSHCN which includes infants, children and youth who have one or more chronic physical, developmental, behavioural or emotional conditions, and require special health and support services. As primary caregivers of CYSHCN, parents struggle to maintain a balance between social and work life, personal well-being and this unique context of parenting 3 9. Moreover, having CYSHCN greatly impacts the family dynamic especially for siblings who may assume caretaker roles, feel protective over their sibling with complex care needs or experience mental health challenges 10–12.…”

Symptom and Technology Management Intervention Usefulness for Caregivers of Children With Tracheostomies and Feeding Tubes

“…Consistent with previous studies, caregivers of these children reported heightened caregiving stress and poor mental health. 24,25 Caregivers may benefit from interventions focused on reducing these caregivers' stress levels. A review of interventions in family caregivers of children with medical complexity found that interventions on respite care offered opportunities for short breaks and telemedicine increased access to specialized services that are not available locally; these interventions also reduced caregivers' stress, anxiety, feeling of isolation, and depressive symptoms.…”

Designing a Child-, Family-, and Healthcare Provider–Centered Procedure Room in a Tertiary Care Children’s Hospital

“…Pain from medical procedures can be a traumatic part of children’s experience in healthcare settings (Dewan et al, 2023; Trottier et al, 2019). Painful procedures are common among children in hospital and outpatient settings (Stevens et al, 2011).…”