This is the first study to measure parent activation among parents of children in the PICU. It incorporates the concept of parent activation into complex framework of elements already known to influence parent traumatic stress in the PICU, thus giving clinicians interested in family-centered care another factor to consider when assessing parent wellbeing, traumatic stress, and ability to engage in the child’s treatment. The study identified several associations among parent activation, parent traumatic stress, the passage of time, and the environmental, situational, and personal context variables for parents with a child in the PICU. The associations are meaningful with practical applications to family-centered care and implications for further research. Of particular relevance, as PICUs revise visitation policies to slow the spread of COVID-19, we must consider how altered visitation might affect parent activation and, accordingly, the parent traumatic stress experience, in total.
Parent traumatic stress and parent activation within 48 hours of PICU admission were associated with traumatic stress and activation one month later. The one-month follow-up timeframe is important because the study suggests early screening for parent traumatic stress can identify parents at higher risk for PTSD symptoms one month later. Early identification of parents at high risk of PTSD could help PICU providers prioritize limited mental health resources, such as psychology and social work consultation, for these families.
We hypothesized that parent activation would be associated with increased parental recognition, utilization, and perceived helpfulness of parent supports in the PICU. Indeed, the identified associations between parent activation and the perceived helpfulness of chaplaincy, as well as between parent activation and parent use of support websites, supports the theory that parent activation is a relevant concept in the framework of factors that may influence parent stress. Furthermore, parent recognition, use, and perceived helpfulness of nine items on the support inventory was positively associated with parent activation at p values greater than our significance criterion but still relatively low (0.01 < p ≤ 0.05). This contrasts with only three support items negatively associated with parent activation at 0.01 < p ≤ 0.05. Any of these associations individually could be due to chance, but we believe that taken as a whole, the identified relationship is parental recognition, use, and perceived helpfulness of support items is associated with increased parent activation.
Since loss of the parental role is a key element of the PICU environment that contributes to parent stress, we hypothesized parent traumatic stress would be inversely proportional to parent activation. The study did not support this hypothesis; in fact, amid a subgroup of mothers who responded to the survey without a parent-partner, we observed the opposite relationship between parent stress at T1 and activation at T2. Though we theorized parents with high activation may feel more secure in their parental role and, thus, have less traumatic stress, the hypothesis may have been flawed in that counter-regulatory relationships do not necessarily entail inverse proportionality, especially in complex systems. We think these were the most interesting findings our study. They challenge the conception that parents who seem confident in their parental role experience less traumatic stress. Further research should explore a possibly counter-regulatory relationship between parent activation and parent traumatic stress as well as the idea that, for certain parents, early traumatic stress in the context of a child’s illness may prime parent activation in the future.
Parent traumatic stress in the PICU was associated with the personal factors of depression, anxiety, and background life stressors, consistent with previous findings (17). This finding indicates an assessment of family stress may be warranted on PICU admission. Parents who stayed in the hospital reported more stress than parents who stayed elsewhere. At our significance criterion of p ≤ 0.01, the perceived helpfulness of a written daily schedule at T2 was associated with decreased parent stress, so emphasizing communication amongst the care team to establish daily goals for a patient may be a helpful way to decrease parent stress in the PICU. The recognition, use, and perceived helpfulness of seven items on the support inventory was associated with decreased parent traumatic stress at p values greater than our significance criterion but still relatively low (0.01 < p ≤ 0.05). This contrasts with only one item (the use of multidisciplinary care conference) that was associated with increased parent stress at 0.01 < p ≤ 0.05.