Commentary By: Dr. Mary Devins – Consultant in Paediatric Palliative Medicine
Mary is a Consultant in Paediatric Palliative Medicine at CHI Crumlin and The Coombe Maternity Hospital Dublin, Ireland. She is also Senior Lecturer in Paediatric Palliative Medicine with Trinity College Dublin
Feature Article:
Bogetz, J., Oslin, E., Barton, K. S., Trowbridge, A., Yi-Frazier, J., Watson, R. S., & Rosenberg, A. R. (2024). Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit. Journal of Palliative Medicine, 27(7), 869, EP – 878.
Commentary
Jori Bogetz and colleagues (2024) reflect that children with Severe Neurological Impairment (SNI) often receive care in a Paediatric Intensive Care Unit (PICU) , but they recognise that little is known of the experiences of their parents at this critical time. They look to examine the sources of, and possible changes in, stress among such parents at the time of their child’s admission to and discharge from PICU as well as weeks after discharge.
This is a mixed method, prospective cohort study undertaken at a single academic quaternary paediatric centre between October 2021 and December 2022. It includes completion of a survey by the parents/legal guardian within the first week of their child’s admission and within four weeks of discharge, plus an invitation to complete a 1:1 semi-structured interview after discharge. 34 eligible parents/legal guardians were approached, of which 25 completed the surveys and 15 completed interviews. Of note, the 9 who declined participation cited being either “too busy” or too stressed to take part in the study, which may have affected the overall stress level results.
Parents/legal guardians described many sources of stress in the PICU and these were categorised into three main themes: uncertainty, advocacy and vulnerability. For each theme, three subthemes emerged. For uncertainty these included: uncertainty about acute events, about long-term trajectory and risk of death. For advocacy these were: to be heard and included, to fill in crucial health care gaps and to retell their child’s story. And for vulnerability subthemes included: feeling helpless, being vulnerable within the PICU environment and feeling isolated and missing family. In those parents/legal guardians whose stress levels increased during the PICU stay, uncertainty and advocacy were the most cited themes and included worries about their child becoming ill again, being their child’s care manager and adjusting to be back at home.
Working in Children’s Palliative Care (CPC) so many of the children we support have SNI and many of them end up in PICU at some point during their illness trajectory. We imagine this as being a stressful time for the child but also for their parents/legal guardians and medical staff. However very few studies prior to this look at stress levels specifically for this cohort of parents/legal guardians.
With so many recent advances in modern medicine, more and more children with SNI are living longer and benefitting from aggressive supportive measures including Non-Invasive Ventilation, Tracheostomy, Jejunal feeding etc. These measures usually have a positive effect on the child’s quality of life, which is our goal in CPC, however there can be a downside which includes increased admissions to hospital and PICU in particular. This takes the child away from their community and their extended family support systems.
This study shows beautifully the high levels of stress parents/legal guardians of children with SNI are coping with throughout their child’s PICU admission. Many themes emerge that confirm what we suspect from day-to-day conversations with families we support.
These include uncertainty about the long-term outcome for their child & possible repeated admissions to PICU, the stress and heavy burden parents/legal guardians feel of having to constantly advocate for their ill child and all the while having to ensure that medical/nursing/allied health staff know how to care for their child appropriately in order to prevent further deterioration/problems.
Of note in this study only 10/25 participants were followed by CPC during the PICU admission and 2/25 had an advanced care plan. Varma et al (2024) in their retrospective audit study for Archives of Disease in Childhood found that only 2 of the 33 children with a complex life-limiting neuro-disability who died in the PICU during the study period (2014 – 2022) had an end-of-life care discussion prior to their admission (1).
This supported my view that sitting with parents/legal guardians when their child is relatively stable to discuss symptom management, quality of life, future goals, wishes and ceilings of care is of utmost importance. It may help alleviate some of the stressors of an admission to PICU for that parent/legal guardian, and perhaps even prevent an admission that may have a detrimental effect on the child’s quality of life. The results of this study will help arm my toolkit and vocabulary when meeting with and supporting Parents/legal guardians when their child is critically ill on our PICU.
References
- Varma R, Mohamed M & Kayani R (2024). A Retrospective Audit for Pre-hospital Respect Documentation for Children with Complex Life Limiting Neuro-Disability Admitted to Paediatric Intensive Care Unit. Archives of Disease of Childhood, 109, A313.