Navigating the aftermath of mild traumatic brain injury in young children : caregiver perspectives

The consequences of traumatic brain injury (TBI) are numerous, and even so-called mild injuries (termed mTBI, also commonly referred to as concussion) can lead to sequelae. These are known as "post-concussion symptoms" (PCS), and include physical (e.g., headaches, sleep disturbances), cognitive (e.g., forgetfulness, lack of attention) and emotional (e.g., irritability, anxiety) changes that can persist for weeks or even months after the injury. During early childhood (0-5 years), children are particularly vulnerable to mTBI as their brains are still malleable and developing. In young children, these changes can directly affect the child's behavior, the quality of parent-child interactions, and family functioning more generally. TBI can have a direct impact on caregiver mental health, by increasing stress, anxiety, and depression. Currently, few studies document the presence and evolution of symptoms after mTBI sustained in early childhood (early mTBI), and no studies have explored caregiver perspectives after this type of injury. The main aim of the present thesis is therefore to characterize PCS and parental perspectives after their infant, toddler or preschooler sustained a mTBI. This thesis includes three empirical articles. The objective of the first article was to report on the development of a behaviorally anchored PCS measure for use with infants, toddlers, and preschoolers, and to provide preliminary validation information for the Report of Early Childhood Traumatic Injury Observations & Symptoms (REACTIONS) inventory. Specifically, the study aimed to: i) Document the process for REACTIONS domain and item selection; ii) Report acute (24-48 hours), post-acute (7-14 days) and persistent (one month: 25-35 days) PCS outcomes cross-sectionally in children 0 to 96 months with mTBI; and iii) Determine PCS reporting patterns and domain/symptom endorsement by age to inform further development of the tool. The sample was composed of 98 children aged between 0-7.99 years old who sustained mTBI, divided into two groups: 0-2 years old (n = 48) and 3-8 years old (n = 50). The results indicated that both age groups exhibited PCS manifestations typically expected after mTBI, such as headache, nausea and balance difficulties. In addition, behavioral symptoms, such as irritability, moodiness and comfort-seeking, were predominant in the acute phase post-injury for the younger age group (0-2 years). The study suggests that to properly understand and treat PCS, it is necessary to use developmentally appropriate approaches such as the REACTIONS inventory. The aim of the second article was to comprehensively investigate the extent and evolution of PCS after early childhood mTBI. A longitudinal study was completed, and data on PCS was collected using the REACTIONS inventory at five different timepoint (retrospective, acute, post-acute, one month and three months post-injury). The sample was composed of 303 children aged between 6 and 72 months, distributed in three groups: children with mTBI (n = 174), children with an orthopedic injury (n = 60) and healthy control children (n = 69). Results revealed that all three groups had comparable PCS before study recruitment, however, children with mTBI had more PCS in total than both comparison groups up to and including three months post-injury. In addition, children with early mTBI had more behavioral symptoms acutely, post-acutely, and 1 month post-injury. This study shows that childhood mTBI is associated with an important PCS burden. The third article aimed to capture caregivers’ perspectives after their young child sustained a mTBI, through semi-structured interviews, to better understand their experiences, and ultimately, guide clinical practice after early childhood mTBI. The sample was composed of 50 caregivers of children aged 6 to 72 months who sustained mTBI. Four main themes were identified through inductive thematic analyses: (1) Visible changes associated with caregiver concerns, (2) A roller-coaster of emotions after the injury, (3) Healthcare providers’ role in addressing need for reassurance, and (4) The need for better information after the injury. The challenges identified by caregivers, such as the need for age-specific information, including guidelines for returning to play and daycare, can guide healthcare professionals and contribute to the development of age-appropriate guidelines and advice. The findings of this thesis offer a deeper insight into the repercussions of early childhood mTBI, as gathered through the perspectives of caregivers. Understanding these perspectives is crucial given the limited cognitive and verbal abilities of this population, which have so far constrained our understanding of PCS in young children. Ultimately, by navigating caregivers' perspectives, this thesis aims to better equip healthcare professionals and caregivers alike with knowledge about the distinctive consequences of early childhood mTBI. It also contributes to our understanding of caregivers’ mental health, an important puzzle piece in the early childhood mTBI recovery process given their central role in a young child’s daily life. This thesis seeks to inspire the formulation of tailored clinical guidelines for child recovery and improved management of caregivers’ needs after such an injury in their young child.

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