ABSTRACT
This research study describes parent anxiety and family distress among three study groups of varying restrictions in parent presence for children in the PICU during a pandemic. A retrospective study was conducted to describe differences in parent anxiety and family distress for parents of children hospitalized before and during the COVID-19 pandemic. Participants fell into three study groups based on the dates of the child's hospital stay and the level of parent and family presence or restriction they experienced. Participants were asked to complete a survey that included basic demographic information along with utilization of the GAD-7 and FDI measures. The data were assessed using descriptive statistics, Fisher's exact test, and the Kruskal-Wallis test. A total of 82 parents of children hospitalized during the specified times in the PICU participated. There was a statistically significant difference among the three cohorts in diagnoses (respiratory, cardiovascular, and medical-surgical), p ≤0.001. A larger percentage of children of the study participants were hospitalized with respiratory illnesses (62.5%) in the unrestricted study group when compared to the other study groups with higher patient acuity. There was also a statistical significance among the three study groups regarding whether the second parent was able to visit the child during the PICU admission (p = 0.007). Our study suggests that restricting parent and visitor presence does not increase parent anxiety or family distress during a child's admission to the PICU. The literature widely supports that having a critically ill child is undoubtedly stressful for parents and families, but the most significant causation for the anxiety and stress remains unknown and is likely multifactorial. Parents who experienced rigid restrictions in parent and visitor presence did not have increased anxiety. Other impactful variables such as a child's mortality risk and the uncertainty of outcome may have impacted anxiety for parents whose children were critically ill. Further research is needed to understand which stressors are most significant, during a critically ill child's hospitalization, from a parent's perspective. Limiting staff and patient exposure to persons who may have contagious illness (restricting parent and family presence) may not in itself lead to increased anxiety and distress for parents and families. This study may provide context for careful development of hospital visitation policies to ensure balance between patient and family centered care and protection from infectious disease. • A child's admission to a pediatric intensive care unit (PICU) is one of the most stressful and anxiety-provoking situations for parents. • Restricting parent presence interrupts the social and emotional relationship and offers less time for bonding.. • Coronavirus-19 (COVID-19) forced hospitals to make abrupt changes to existing visitation policies. • This research provides context for support of careful development and implementation of hospital visitation policies.
ABSTRACT
Purpose This research study describes parent anxiety and family distress among three study groups of varying restrictions in parent presence for children in the PICU during a pandemic. Design and methods A retrospective study was conducted to describe differences in parent anxiety and family distress for parents of children hospitalized before and during the COVID-19 pandemic. Participants fell into three study groups based on the dates of the child's hospital stay and the level of parent and family presence or restriction they experienced. Participants were asked to complete a survey that included basic demographic information along with utilization of the GAD-7 and FDI measures. The data were assessed using descriptive statistics, Fisher's exact test, and the Kruskal-Wallis test. Results A total of 82 parents of children hospitalized during the specified times in the PICU participated. There was a statistically significant difference among the three cohorts in diagnoses (respiratory, cardiovascular, and medical-surgical), p ≤0.001. A larger percentage of children of the study participants were hospitalized with respiratory illnesses (62.5%) in the unrestricted study group when compared to the other study groups with higher patient acuity. There was also a statistical significance among the three study groups regarding whether the second parent was able to visit the child during the PICU admission (p = 0.007). Conclusions Our study suggests that restricting parent and visitor presence does not increase parent anxiety or family distress during a child's admission to the PICU. The literature widely supports that having a critically ill child is undoubtedly stressful for parents and families, but the most significant causation for the anxiety and stress remains unknown and is likely multifactorial. Clinical and research implications Parents who experienced rigid restrictions in parent and visitor presence did not have increased anxiety. Other impactful variables such as a child's mortality risk and the uncertainty of outcome may have impacted anxiety for parents whose children were critically ill. Further research is needed to understand which stressors are most significant, during a critically ill child's hospitalization, from a parent's perspective. Limiting staff and patient exposure to persons who may have contagious illness (restricting parent and family presence) may not in itself lead to increased anxiety and distress for parents and families. This study may provide context for careful development of hospital visitation policies to ensure balance between patient and family centered care and protection from infectious disease.
ABSTRACT
BACKGROUND: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. OBJECTIVE: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? DESIGN: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement. PARTICIPANTS: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. APPROACH: We used a content analysis approach and identified the main themes using an inductive process. KEY RESULTS: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. CONCLUSIONS: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. TRIAL REGISTRATION: Clinicaltrials.gov NCT02722382.