Abstract
Medical settings can be frightening and stressful places for pediatric patients and their families. During the COVID-19 pandemic fear and anxiety associated with receiving medical care increased as medical facilities dramatically altered the way they functioned in attempts to stop the spread of the virus. Certified Child Life Specialists (CCLSs) are medical professionals who provide psychosocial support for pediatric patients and their families by helping them understand and cope with medical procedures and the medical environment. In this role, CCLSs are likely to have important insights into the experiences and needs of pediatric patients and their families during COVID-19. Using a mixed-methods design, 101 CCLSs completed an online survey and 15 participated in follow-up interviews examining their experiences with and observations of children and families in medical environments during the pandemic. Participants emphasized a need to maintain a focus on child- and family-centered care for the well-being of patients and their families. While recognizing the need to socially distance to limit the spread of COVID, participants expressed concern about restrictive policies that did not balance the physical and mental health needs of patients and families. Participants also discussed the important role of child life services during the pandemic and the unique and multifaceted contributions CCLSs made to support patients, families, other medical professionals, and communities. Recommendations for supporting children and families in medical environments moving forward are discussed in light of lessons learned during the pandemic.
Keywords: COVID-19, Family-Centered Care, Child Life Specialists, Mixed-Methods, Pediatric Medical Care
Highlights
COVID-19 has increased stress and reduced social support for pediatric patients and their families in medical settings.
Certified Child Life Specialists (CCLSs) provided important support to children, families, medical staff, and communities during the pandemic.
CCLSs recommend considering the impact of visitation policies enacted during the pandemic on pediatric patients’ development and well-being.
CCLSs propose medical teams work across disciplines to identify best practices for supporting patients and families based on lessons from the COVID-19 pandemic.
The onset of the COVID-19 pandemic created tremendous stress and countless challenges for families and communities. Healthcare facilities were overwhelmed, child care facilities closed, schools closed or moved online, many people struggled with job loss or adjusting to remote work, and others faced working with the public raising concerns over their safety and that of their loved ones. As of the writing of this article, the pandemic is ongoing as rates of the disease vary across the globe (World Health Organization, n.d.), access to vaccines is still limited in some countries (Holden, n.d.) and new variants are a continuous source of concern (Center for Disease Control and Prevention, n.d.). At least for the moment, however, the situation has improved significantly in some areas of the world. In the United States, where the current study was conducted, vaccines are readily available and states have lifted the majority of restrictions for businesses and public spaces (New York Times, 2021). Yet we are only beginning to see and understand how the pandemic has impacted children and families in different contexts, such as healthcare settings. Medical care facilities had to dramatically adjust how they provide services during the pandemic (Silvera et al., 2021; Vance et al., 2021). Understanding the impact of these changes on children and families has the potential to inform policies for working with children and families in medical settings both generally and during public health crises.
Early in the pandemic, some medical facilities were overwhelmed with COVID-19 patients while simultaneously dealing with limited supplies of personal protective equipment (PPE). These challenges caused great concern over how to treat patients with COVID while keeping medical personnel and other patients safe (Bauchner et al., 2020; Virani et al., 2020). Medical professionals were quickly tasked with figuring out how to navigate the pandemic as safely as they could while maintaining quality care for patients. In most medical facilities this resulted in significant changes to visitation policies for patients (Virani et al., 2020) reducing patients’ access to emotional support systems. The impact of serious illness or injury on the entire family is well-established (Herzer et al., 2010; Shudy et al., 2006; Wittenberg et al., 2013). Extensive research documenting the importance of family support and well-being to positive outcomes for the patient has led to patient- and family-centered care as the accepted and expected approach to medical care (American Academy of Pediatrics Committee on Hospital Care & Institute for Patient- and Family-Centered Care, 2012). Denying or severely restricting family members’ ability to visit their ill or injured loved one undoubtedly increased stress for the patient and family, and is inconsistent with a family-centered care approach (Al-Motlaq et al., 2021; Raphael et al., 2021; Vance et al., 2021).
Under typical conditions, experiences in medical environments are often frightening and anxiety producing both for children with serious injuries or chronic or acute illnesses and their families (Coyne, 2006; Chieng et al., 2014; Romito et al., 2021; Salmela et al., 2010; Wilson et al., 2010), and can contribute to long-term mental health problems (Landolt et al., 2011; Nelson & Gold, 2012; Price et al., 2016). Reducing access to emotional support during the pandemic likely increased this fear and anxiety elevating the potential for both short- and long-term negative impacts on mental health (McBride, 2021). Medical professionals and administrators undoubtedly did their best to meet the needs of patients and families during this extremely difficult and unprecedented time, yet little is known about the impact of changes in medical facilities’ policies and procedures on children and families. An emerging body of literature has challenged medical facility administrators and researchers to examine the developmental and psychosocial impact of highly restrictive visitation policies on pediatric patients and their families (McBride, 2021; Raphael et al., 2021; Vance et al., 2021). Learning from this challenging time has the potential to improve quality of care for children and families moving forward.
The American Academy of Pediatrics identifies Certified Child Life Specialists (CCLSs) as an important part of pediatric medical teams (Romito et al., 2021). CCLSs are medical professionals with extensive developmental training focused on fostering optimal development and well-being of infants, children, adolescents, and young adults by helping patients and their families prepare for and cope with their experiences in medical environments (Boles et al., 2020; Romito et al., 2021). CCLSs receive certification through the Association of Child Life Professionals (ACLP). Certification requires a minimum of a bachelor’s degree including ACLP required coursework in designated content areas related to child development, working with families, and medical-related issues (e.g., terminology, ethics). In addition, certification requires completion of a 600 hour clinical internship, and passing the child life certification exam (Association of Child Life Professionals, n.d.).
Based on their focus on psychosocial care, CCLSs are well-equipped to work with children and families in times of stress to help increase pediatric patients’ and their families’ understanding of what to expect from medical procedures and environments. They also assist pediatric and young adult patients in utilizing effective coping techniques to help them reduce pain and distress associated with medical events (Boles et al., 2020; Lookabaugh & Ballard, 2018; Romito et al., 2021). By helping reduce fear and anxiety, CCLSs are instrumental in minimizing potential adverse short- and long-term psychological impacts of medical procedures and hospitalization (Boles et al., 2020; Claridge et al., 2020; Grissim et al., 2020; Romito et al., 2021). For example, children who have received effective preparation, procedure support, and education on coping skills demonstrate fewer behavioral disturbances during and beyond their time in a medical facility (Boles et al., 2020; Romito et al., 2021).
CCLSs also help facilitate coping and involvement for caregivers and families who are adjusting to a child’s illness and treatment. They attend to the psychosocial needs of patients and their families that other medical professionals have limited time to address as they focus on the medical needs of patients (Boles et al., 2020). CCLSs are also typically the only medical professionals who routinely work with siblings of pediatric patients (Romito et al., 2021). This is important as siblings of pediatric patients can be scared and confused about what is happening to their sibling and may be negatively impacted by their parents’ reduced physical and emotional availability (Boles et al., 2020; Gill, 2020; Nabors et al., 2018; Romito et al., 2021; Sharpe & Rossiter, 2002).
In a series of reports, the Association of Child Life Professionals (2020a, 2020b, 2020c) examined COVID-related policy and programming changes that impacted the services and support children and families had access to in medical settings, as well as the impact these changes had on the work of CCLSs. These reports indicated that the majority of medical settings across the U.S. limited parent/caregiver visitation, banned sibling visitation, and reduced or banned CCLSs’ in-room access to patients. The current study aims to build on this research by examining how these changes impact patients and their families based on CCLS’ perspectives on the following questions:
How has COVID-19 impacted children and families’ experiences in medical settings?
How has COVID-19 impacted the work of Certified Child Life Specialists?
What are CCLSs’ recommendations based on what they have learned during the pandemic?
Methods
Study Design, Recruitment, and Procedures
In this study, we utilized a convergent mixed-methods design (Creswell & Plano Clark, 2018), including a 35-item survey completed by all participants (n = 101) and follow-up interviews with 15 participants. Surveys assessed Certified Child Life Specialists’ perceptions of the impact of changes in the medical environment in response to the COVID-19 pandemic on pediatric patients and their families, and in their role as CCLSs. Semi-structured interviews expanded on topics covered in the survey. Data collection was concurrent, and neither collection method was dependent on the results of the other. Quantitative and qualitative data sets were analyzed separately. Results were then compared and contrasted (Creswell & Plano Clark, 2018). Multiple researchers were involved in data collection and analysis, and peer debriefings were conducted throughout the analysis further enhancing credibility of results (Patton, 2002).
CCLSs were recruited via the internet from mid-August until mid-October of 2020, which was approximately 6 to 8 months into the pandemic. Utilizing an online forum for the organization that certifies child life specialists in the United States and a social media site for a regional child life group, CCLSs who were currently working in the field were invited to complete an anonymous survey using QualtricsXM. Weblinks were provided in the recruitment post for participants to access the survey. Participants were presented with a description of the study and provided informed consent approved by the Institutional Review Board at Central Michigan University before beginning the survey. The average time of completion for surveys was 25 min (sd = 38 min; median = 14 min), ranging from 4 to 284 min. Participants were not required to complete the survey in a specific time frame therefore the outlying longer completion times may have resulted from participants beginning the survey at one time point and completing it later. Surveys were completed on a volunteer basis and no incentive or compensation was offered other than contributing to research in the field. At the end of the survey, participants were invited to be contacted for a follow-up virtual interview.
Individuals who agreed to be interviewed were taken to a separate form where they provided contact information that could not be traced back to the survey they completed. Within two days of submitting contact information, participants were emailed details about the interview process and scheduled an interview time. Interviews were completed by the first and second authors during September of 2020, approximately 6 months into the pandemic. Interviews were conducted virtually via WebEx and lasted between 25 and 37 min (M = 29.5, SD = 3.4). Participants could elect to be interviewed with video on or off. Before beginning the interview, participants were reminded of the study procedure and provided recorded verbal informed consent to participate. All interviews were recorded and transcribed by the WebEx platform and then reviewed for accuracy.
Interview data were analyzed on an on-going basis. Following each interview, the first and second author debriefed identifying and discussing key information from each interview and reflecting on emerging themes. Data saturation was reached after 12 interviews with no additional substantive themes emerging (Creswell, 2015). At this point the option to participate in an interview was removed from the online survey. However, three additional interviews that had already been scheduled were completed and included in the analysis.
Sample Characteristics
The online survey was completed by 101 CCLSs from throughout the United States. The majority of participants worked in a hospital setting (n = 98) with the remaining participants working in an outpatient medical clinic (n = 3). Fifty-three (53) participants had a bachelor’s degree, 46 had a master’s degree, and 2 had a doctoral degree. Time since becoming a CCLS ranged from 3 months to 38 years (M = 10.8 years, SD = 8.9), and time in current position ranged from 2 months to 33 years (M = 6.3 years, SD = 6.9). The number of full-time child life staff working in participants’ facilities ranged from 1 to 50 (M = 11.1, SD = 11.2).
Interviews were completed by 15 CCLSs. For this subsample, time since becoming a CCLS ranged from 1 to 31 years (M = 12.3 years, SD = 8.3), and participants worked in facilities with a range of 1 to 31 full-time child life staff (M = 7.1, SD = 5.8). Although other demographic information was not collected to protect the anonymity of participants, a membership survey of the larger organization from which this sample was drawn indicates that professionals in the field of child life are predominately White (91%) and female (99%) (Association of Child Life Professionals 2018).
Survey Design
COVID-19 was newly emerging at the time of survey design and existing scholarly literature was limited. However, changes to policies and procedures in medical settings were being discussed by news outlets. Our guiding research questions emerged from an interest in how policy changes were impacting pediatric patients and their families. The survey used for this study was developed based on our research questions.
Survey participants reported on various aspects of their work and how it was impacted by the pandemic, including: (1) professional background and work environment (e.g., How long have you been a CCLS? What type of facility do you currently work at? (2) understanding and value of CCLSs’ roles (e.g., How well do you believe medical providers [e.g., physicians, nurses] at your facility understand the role CCLS? How valued do you believe child life is by the parents/caregivers of your patients?); (3) impact of COVID-19 on patients, families, and communities (e.g., How concerned are caregivers of children you worked with about the possibility of their child getting COVID-19? How much has the experience of parents/caregivers in your facility changed during the pandemic? To what extent has your community been impacted by the COVID-19 pandemic?); (4) impact of COVID-19 on CCLSs’ roles (e.g., How have the number of hours you work been impacted by COVID-19? How has access to intervention materials in patients’ rooms changed?); and (5) how well their facilities addressed the pandemic (e.g., Please rate your overall satisfaction with the way your facility has handled the pandemic?).
Responses for the majority of questions, with the exception of those related to professional background and work environment, were provided on an 11-point slider scale. Research examining the use of slider scales versus categorical response formats, as well as research examining the ideal range of responses, has not consistently found one format (Bosch et al., 2019; Roster et al., 2015) or numeric range (Lewis & Erdinc, 2017) to be clearly superior to another. We therefore elected to provide opportunity for variability in responses by using an 11-point slider scale allowing participants to respond with any whole number from 0 (not at all) to 10 (significantly/extremely). Categorical variables were created to observe frequency of responses (scores of 0–2 = very low, 3–5 = somewhat low, 6–8 = somewhat high, and 9–10 = very high) for descriptive analyses. Additionally, space was provided for participants to elaborate on their response to ten items (e.g., How important do you believe the work of child life specialists is during the pandemic [0 = Not Important;10 = Extremely Important]? Please briefly explain). Finally, two open-ended were included (e.g., In your role, what has been the most difficult aspect of COVID-19 to cope with?).
Interview Design
Interviews consisted of a series of open-ended questions that explored key survey questions in greater depth. Participants were asked to discuss the impact of the pandemic on patients’ and families’ experiences in the medical environment, the impact of the pandemic on their position and their work, and their recommendations for supporting children and families in medical environments during the pandemic and beyond.
Analytic Strategy
Analysis of the qualitative and quantitative data were conducted concurrently, though emergent findings from the interviews were used to guide further exploration of the quantitative data. We will first present descriptive findings from the quantitative data. Then we will present findings from a multinomial regression examining how valued CCLSs felt during the pandemic in relation to how well medical providers understood their role more generally (this analysis was motivated by findings from the interviews). We will then present key findings from a content analysis of two open-ended questions from the survey followed by a thematic analysis of the interviews.
Content analysis was used to gain insights from two open-end survey questions: one exploring participants’ perspectives on the most challenging aspects of COVID-19 on their work, and the other examining the perceived value of child life services during the pandemic. The first and second author used a constant comparative method to identify major themes from participants’ responses (Lincoln & Guba, 1985; Strauss & Corbin, 1990). All three authors met to further revise and refine themes. The first and second author then independently coded responses using the refined themes. Finally, all three authors met to review coded data and resolve any coding discrepancies.
To analyze findings from the interviews, a thematic analysis related to each research question was used to identify common themes emerging from the data (Braun & Clarke, 2006). The authors immersed themselves in the data by listening to, reading, and re-reading each interview recording and transcript. The first two authors initially independently identified patterns in the data and then all three collaborated to determine common themes for each research question.
Results
Descriptive Analysis of Survey Items
Respondents indicated changes to the facilities and to the way CCLSs fulfill their roles somewhat to greatly affected the experiences of pediatric patients (82%), caregivers/parents (80%), and most especially siblings (94%; see Table 1 for summary of CCLSs’ reports of how COVID affected patients and families). CCLSs also noted that many parents were moderately to highly concerned about their child (75%) or themselves (60%) contracting the virus, and that CCLSs’ services were highly valuable for patients who tested positive (64%) and their caregivers (44%), as well as for children whose parents had tested positive (56%).
Table 1.
CCLSs’ Perceptions of patient and family experiences during COVID-19 pandemic
| Continuous | Categorical | ||||||
|---|---|---|---|---|---|---|---|
| M (SD) | Range | Very low | Somewhat low | Somewhat high | Very high | n | |
| Caregivers’ understanding of CCLSs’ rolea | 7.37 (1.43) | 4–10 | .00% | 12.87% | 65.35% | 21.78% | 101 |
| CCLSs valued by parents/caregiversb | 8.60 (1.12) | 5–10 | .00% | .99% | 42.57% | 56.44% | 101 |
| Changes in children’s experiencesc | 7.52 (2.00) | 1–10 | 3.00% | 15.00% | 46.00% | 36.00% | 100 |
| Changes in earegivers’ experiencesc | 7.70 (2.16) | 1–10 | 1.02% | 19.39% | 35.71% | 43.88% | 98 |
| Changes in siblings’ experiencesc | 9.42 (1.71) | 1–10 | 2.02% | 4.04% | 4.04% | 89.90% | 99 |
| Value for COVID + children to have CCLSd | 8.58 (1.92) | 4–10 | .00% | 14.85% | 20.79% | 64.36% | 101 |
| Value for parents of COVID + children to have CCLSd | 7.91 (2.15) | 1–10 | .99% | 16.83% | 38.61% | 43.56% | 101 |
| Value for children with COVID + parents to have CCLSd | 8.24 (2.13) | 1–10 | 2.04% | 11.22% | 30.61% | 56.12% | 98 |
| Children’s concern about contracting COVID-19e | 4.83 (2.35) | 0–10 | 19.39% | 45.92% | 27.55% | 7.14% | 98 |
| Caregivers’ concern about their child contracting COVID-19e | 6.95 (2.38) | 0–10 | 5.00% | 20.00% | 49.00% | 26.00% | 100 |
| Caregivers’ concern about themselves contracting COVID-19e | 6.13 (2.42) | 1–10 | 8.00% | 32.00% | 43.00% | 17.00% | 100 |
Note. Continuous variables were on an 11-point scale (0–10); categorical variables (0–2 = very low; 3–5 = somewhat low; 6–8 = somewhat high; 9–10 = very high)
a0 = not at all; 10 = extremely well
b0 = not at all; 10 = extremely valued
c0 = not at all; 10 = significantly
d0 = not at all; 10 = extremely valuable
e0 = not at all; 10 = extremely concerned
Participants’ reports on the impact of COVID-19 on their community, facility, and jobs are summarized in Table 2. Sixty-nine percent (69%) reported that playrooms had been closed completely, 33% reported moderate to significant changes to access to intervention materials, and 52% to entertainment materials. When asked about how valued they felt by their place of employment during the pandemic, 73% reported that they felt somewhat to highly valued.
Table 2.
CCLSs’ experiences during the COVID-19 pandemic
| Continuous | Categorical | |||||||
|---|---|---|---|---|---|---|---|---|
| M (SD) | Range | % | Very low | Somewhat low | Somewhat high | Very high | n | |
| Impact of COVID-19 on communitya | 7.60 (1.82) | 2–10 | – | 0.99% | 12.87% | 53.47% | 32.67% | 101 |
| Impact of COVID-19 on facilitya | 7.57 (2.05) | 1–10 | – | 1.98% | 14.85% | 48.51% | 34.65% | 101 |
| Change in number of work hours | ||||||||
| Increased | – | – | 6.93% | – | – | – | – | 7 |
| Decreased | – | – | 28.71% | – | – | – | – | 29 |
| Stayed the same | – | – | 64.36% | – | – | – | – | 65 |
| CCLSs allowed in COVID + | ||||||||
| Yes | – | – | 36.63% | – | – | – | – | 37 |
| No | – | – | 24.75% | – | – | – | – | 25 |
| Depends on situation | – | – | 38.61% | – | – | – | – | 39 |
| Playroom accessb | 8.92 (2.16) | 0–10 | – | 3.09% | 8.25% | 10.31% | 78.35% | 97 |
| Changes to intervention materialsc | 4.49 (3.24) | 0–10 | – | 34.33% | 32.84% | 17.91% | 14.93% | 67 |
| Changes to entertainment accessc | 5.47 (2.93) | 0–10 | – | 21.74% | 27.17% | 34.78% | 16.30% | 92 |
| Availability of PPE impact on child life servicesd | 6.08 (3.22) | 0–10 | – | 15.38% | 25.27% | 31.87% | 27.47% | 91 |
| Medical provider understanding of rolee | 7.37 (1.25) | 4–10 | – | 0.00% | 6.93% | 77.23% | 15.84% | 101 |
| CCLSs valued by medical stafff | 7.32 (1.40) | 3–10 | – | 0.00% | 8.91% | 71.29% | 19.80% | 101 |
| CCLSs’ beliefs about their importance during pandemicg | 9.25 (1.34) | 5–10 | – | – | 2.02% | 23.23% | 74.75% | 99 |
| Facility’s value of CCLSs’ work during pandemicf | 6.86 (2.61) | 0–10 | – | 8.16% | 19.39% | 39.80% | 32.65% | 98 |
| Overall satisfaction with the way facility handled COVID-19h | 6.53 (2.16) | 2–10 | – | 5.10% | 26.53% | 48.98% | 19.39% | 98 |
Note. Continuous variables were on an 11-point scale (0–10). Categorical variables (0–2 = very low; 3–5 = somewhat low; 6–8 = somewhat high; 9–10 = very high); Received training for pandemic/crisis (0 = no; 1 = yes).
a0 = not at all; 10 = extremely impacted
b0 = not at all; 10 = significant change (playrooms closed)
c0 = not at all; 10 = significantly
d0 = not at all; 10 = significantly
e0 = not at all; 10 = extremely well)
f0 = not at all; 10 = extremely valued
g0 = not at all important; 10 = extremely important
h(0 = extremely dissatisfied; 10 = extremely satisfied
Multinomial Regression Results
We used multinomial regression to further examine how valued CCLSs felt during the pandemic, especially in relation to how well medical providers understood the role of child life specialists. This post hoc analysis was informed by common themes that emerged from the interviews. Models were adjusted for the length of time participants had been in their current position, and if they experienced changes in their work hours, both of which may affect how valued they felt. Given the exploratory nature of this study, we also examined the correlation between items related to CCLSs’ experiences during the pandemic and their perceptions of understanding and value of child life specialists’ roles in medical settings (see Table 3). Items that were moderately to strongly related to the outcome variable, and that were not strongly related to each other to avoid issues of multicollinearity, were selected as controls for the analytic model (i.e., number of full-time child life staff; availability of PPE within facility; medical provider’s understanding of the role of child life specialists; and participants’ overall satisfaction with how the pandemic was handled within their facility). Listwise deletion was used in the case of missing data as this method only resulted in a loss of 6% (n = 6) of the sample.
Table 3.
Correlation of items related to CCLS’ experiences in medical settings
| 1. | 2. | 3. | 4. | 5. | 6. | 7. | 8’. | 9. | 10. | 11. | |
|---|---|---|---|---|---|---|---|---|---|---|---|
| 1. Facility’s value of CCLSs’ work during pandemic | 1.000 | ||||||||||
| 2. Years as CCLS | 0.184 | 1.000 | |||||||||
| 3. Years in current position | 0.111 | 0.695*** | 1.000 | ||||||||
| 4. # of full-time child life staff | 0.284** | −0.041 | −0.105 | 1.000 | |||||||
| 5. # of part-time/per diem child life staff | 0.168 | 0.217* | −0.039 | 0.341*** | 1.000 | ||||||
| 6. Impact of COVID-19 on community | 0.063 | −0.040 | 0.052 | 0.174 | −0.137 | 1.000 | |||||
| 7. Impact of COVID 19 on facility | −0.053 | 0.116 | 0.160 | 0.084 | −0.039 | 0.650*** | 1.000 | ||||
| 8. Facility’s supply of PPE | 0.250* | −0.086 | −0.133 | 0.254* | 0.025 | 0.169 | −0.065 | 1.000 | |||
| 9. Medical provider understanding of role | 0.329*** | 0.251* | 0.234* | 0.139 | −0.061 | 0.025 | 0.050 | 0.138 | 1.000 | ||
| 10. CCLSs valued by medical staff | 0.496*** | 0.307*** | 0.298** | 0.098 | −0.026 | 0.124 | 0.114 | 0.157 | 0.759*** | 1.000 | |
| 11. Overall satisfaction with way facility handled pandemic | 0.517*** | 0.145 | 0.053 | 0.120 | 0.141 | −0.064 | 0.032 | 0.275** | 0.224* | 0.223* | 1.000 |
*p < 0.05, **p < 0.01, ***p < 0.001
Participants’ perceptions that other medical professionals understood the role of child life specialists was most strongly associated with feeling that CCLSs were highly valued during the pandemic (relative to low to neutral feelings of value; RRR = 3.59, 95% CI [1.52–8.48]). That is, those participants who felt their roles were well understood by medical professionals generally felt that their position was more valued during the pandemic, which aligns with findings from the content analysis and interviews, presented below. Full results for the regression are reported in Table 4.
Table 4.
Multinomial regression for how valued CCLSs felt during COVID-19 pandemic (n = 95)
| Somewhat high | Very high | |
|---|---|---|
| RRR [95% CI] | RRR [95% CI] | |
| Medical providers’ understanding of CCLSs’ role | 1.50 [0.78–2.90] | 3.59 [1.52–8.48]** |
| Years in current position | 0.95 [0.85–1.07] | 1.00 [0.90–1.13] |
| Degree (Masters) | 0.55 [0.13–2.34] | 0.60 [0.10–3.32] |
| # of full-time child life staff | 1.13 [1.00–1.27] | 1.13 [0.99–1.29] |
| Hours changed | ||
| Decreased | 0.89 [0.21–3.69] | 0.44 [0.07–2.65] |
| Increased | – | – |
| Availability of PPE impact on child life services | 0.83 [0.67–1.04] | 0.90 [0.68–1.18] |
| Overall satisfaction with the way facility handled COVID-19 | 1.84 [1.26–2.70]** | 2.59 [1.61–4.17]*** |
How valued CCLS felt during pandemic (referent category = not valued at all to somewhat not valued = 0–5; somewhat high = 6–8; very high = 9–10); CCLS = Certified Child Life Specialist; PPE = personal protection equipment; Availability of PPE impact on child life services (0 = not at all; 10 = extremely impacted)
*p < 0.05, **p < 0.01, ***p < 0.001
Content Analysis
The five most salient themes emerging from responses to “In your role, what has been the most difficult aspect of COVID-19 to cope with?” included: (1) fear, uncertainty, and emotional impact on patients, staff, and society surrounding COVID-19; (2) the negative impact on patient- and family-centered care resulting from changing policies and procedures; (3) departmental and schedule changes (4) changes in how CCLSs fulfilled their roles; and (5) changing, inconsistent, and unclear policies. Participants were asked to “please briefly explain” following their response to the slider scale question “How important do you believe the work of child life specialists is during the pandemic?” The four most salient emergent themes were: (1) training and skills prepare CCLSs to provide emotional support to pediatric patients, especially in response to changes associated with COVID-19; (2) that CCLSs are always essential or that the pandemic increased the importance of child life services; (3) training and skills prepared CCLSs to educate and support families of pediatric patients and children of adult patients; and (4) helped children and families understand COVID-19 and what to expect from new policies resulting from the pandemic. Tables 5 and 6 summarize the full results of the content analysis.
Table 5.
Most difficult aspect of COVID-19 in role as a CCLS: Themes and number of participants noting each theme (n = 96)
| Theme | # of Participants (%) |
|---|---|
| Fear, uncertainty, and emotional impact on patients, staff, and society surrounding COVID-19 | 33 (34.3) |
| “The fear of the unknown”; “fear of exposure”; “the lack of a definite ending”; “Heightened stress and anxiety of everyone-patients, families, | |
| and staff”; “Watching families struggle with death/loss”; “The mass chaos and fear-based energy that has permeated society” | |
| Negative impact on patient- and family-centered care resulting from changing policies and procedures | 27 (28.1) |
| “Seeing families struggle not being able to be together”;“Volunteers unable to be here”; “The visitor policy-only one parent, no siblings”; | |
| “No access to the playroom/teen lounge/outdoor space reducing patients sense of normalcy and escape from the hospital environment” | |
| Departmental and schedule changes | 27 (28.1) |
| “Changes in coverage/patient load”; “Furloughed staff”; increased workload for others”; “Cut hours leading to inconsistent coverage” | |
| Changes in how CCLSs’ fulfilled their roles | 23 (24.0) |
| “Not being able to see every patient, especially when some of these patients need us most”; “Over the phone or virtual grief support has been | |
| ineffective and cold”; “Adapting intervention materials”; “Feeling disconnected from siblings who would also benefit from support” | |
| Changing, inconsistent, and unclear policies at medical facilities | 19 (20.2) |
| “Constant changes and added steps/rules to follow almost daily”; “policies being reinforced differently across departments and units” | |
| Protective equipment can be scary and interfere with connecting with children | 8 (8.33) |
| “The additional PPE and not seeming scary to patients”; “building rapport through layers of PPE” | |
| Shortage of personal protective equipment | 2 (2.1) |
| “Not being able to support patients for over a month due to lack of PPE” | |
| Feeling underappreciated | 2 (2.1) |
| “The most difficult aspect for me to cope with were feeling devaluated and unappreciated in my role” | |
| Personal challenges balancing work and parenting | |
| “Trying to juggle work with my kids being at home and now doing online school has been a huge challenge” | 2 (2.1) |
Note. Content analysis of the survey question, “In your role, what has been the most difficult aspect of COVID-19 to cope with?” Participants’ responses were coded and counted in multiple themes when applicable
Table 6.
Importance of child life services: Themes and number of participants noting each theme (n = 58)
| Theme | # of Participants (%) |
|---|---|
| Training and skills help CCLSs provide emotional support to pediatric patients, especially in response to changes associated with COVID-19 | 33 (56.9%) |
| “Our services are needed to help children better understand their diagnosis, cope with hospitalization, cope with their emotions, and provide activities for norm and distraction”; “This is a time of high stress, fear, and confusion. As child life specialists, we have the tools to help children cope in this scary new world” | |
| Always essential or pandemic increased importance of child life services | |
| “We are essential”;“We provide coping and support ALL the time-crisis or not. Our services are always important!”; “more so now than ever!” | 21 (36.2%) |
| Training and skills prepare CCLSs to educate and support families of pediatric patients and children of adult patients | 11 (19.0%) |
| “I am also trained to provide parents with knowledge of the psychosocial aspects of their child’s medical treatment”; “Support families with grief, separation (when a family member is in the hospital and there are no visitors allowed), and illness”; “Many of us also helped with communication and bereavement needs for families of adult patients with COVID” | |
| Help children and families understand COVID-19 and what to expect from new policies resulting from the pandemic | 10 (17.2%) |
| “Helping patients and parents understand this pandemic in a developmentally appropriate way”;“Our skill set explaining things to children, especially scary/unknown things like a pandemic” | |
| Using skills to support other medical professionals and educating the larger community | 6 (10.3%) |
| “In some ways we’re needed more because a lot of the staff look to child life for support for themselves when in crisis”; “When not engaging in patient care, we can be educating the community” | |
| Important but need to weigh benefits of hands-on services with risks of spreading COVID | |
| “I think that each case is unique. We have to weigh the good of the services that we provide against the cost to society should we inadvertently spread a potentially deadly disease to other patients, to our families and co-workers as well as to society as a whole” | 2 (3.4%) |
Note. Content analysis examined responses provided to “please briefly explain” following the slider scale question,”How important do you believe the work of child life specialists is during the pandemic.” Participants’ responses were coded and counted in multiple themes when applicable
Interview Findings
Research Question 1: How has COVID-19 Impacted Children and Families’ Experiences in Medical Settings?
All interviewees noted that maintaining a focus on child- and family-centered care was very important but proved to be challenging during the pandemic. CCLSs discussed how this affected pediatric patients. In the words of one participant,
It’s lonely and isolating, they weren’t even really supposed to leave the room. I think that’s a very different feeling than normal where we really encourage kids to get up and walk around and go to the activity center and go to the library and then for a while it was like, no, you just stay right here and I think that makes it scary too, that’s there’s like something out there that’s gonna get you. And then on top of that staff are wearing the mask, the goggles and all this stuff so I think just being in the hospital was a very different atmosphere for patients and families and for parents to be nervous about just getting sick.
More specifically, participants identified five main challenges associated with providing patient- and family-centered care, including: inconsistent, unclear, and changing policies; visitation restrictions; access to child life services; lack of volunteer support; and limited access to play materials.
Unclear, Inconsistent, and Changing Policies
CCLSs repeatedly reported patients, families, and staff were frustrated and negatively impacted by unclear, inconsistent, and frequently changing policies. One participant stated that “every day there’s a new policy, a new guideline, someone’s questioning something and you have to switch. Its constantly switching gears.” One participant noted that frequent policy changes made it difficult for everyone to be on the same page: “I feel like we got mixed messages, depending on who we ask, one person who was on the team would hear one thing and the other child life specialist would get a totally different message.” Another participant provided this example, “the people screening at the door thought two parents could come in for outpatient visits but then half the staff thought it was only one allowed.” Parents were frustrated by the differing information they received by hospital and clinic staff.
Visitation Restriction
In addition to a frequent lack of clarity associated with rapidly changing policies, interviewees noted that the visitation policies put in place for pediatric patients made it hard for them to feel like they were meeting the needs of patients and families. All CCLSs’ discussed visitation policies that negatively affected families. In the words of one participant,
We’re only allowed to have one parent come into our building and no siblings are allowed. And that has been a major challenge. That was hard for child life and how to advocate, because we saw this need… parents would come in and they would be in tears that their spouse could not be with them because they’d never done hospital visits alone.
These visitation restrictions were difficult for both families and healthcare providers to navigate. It was especially difficult for caregivers who were not used to being in the hospital environment on their own, and for families with additional children who were unable to find childcare to allow them to be with their in-patient child. Siblings not being allowed to visit was a particular point of focus among many participants. In the words of one interviewee, “right now that’s a huge nightmare—families need their medical care and can’t come in because we’re telling them they have to keep the other kids home, and they don’t have the resources. So, kids are sitting in cars.” While changes in visitation policies were understood as necessary to maintain a safe environment, they contributed to a more stressful hospital experience for children and families.
Several participants raised concerns about young adults. In many facilities, patients 18 years and older were not allowed any visitors. CCLSs discussed the particular challenges of young adults who are often not developmentally equipped to be alone in medical settings. As one CCLS discussed, “anyone over eighteen is not allowed a visitor at all and that I find I think probably even harder than the one parent rule.”
In addition, a number of CCLSs mentioned that families found creative ways to show support when visitation was limited. Participants talked about family members camping out in parking garages or outside facilities to still feel as though they were present with their loved one. While CCLSs understood why families used these approaches, some were concerned about the safety of these strategies.
Access to Child Life Services
Interviewees discussed how access and opportunities to support patients had changed during the COVID-19 pandemic. Limiting the number of medical professionals in-room to help reduce the spread of the disease and to preserve PPE led to less access to child life services for patients both with and without COVID-19. As one participant discussed what happened at her facility,
There was never really a mass rollout or communication to say you cannot see a COVID patient. There was very much communication to say you need to conserve PPE, so to really make a really good clinical assessment about what a possible COVID patient might need.
While this participant was able to see COVID patients as deemed important, many interviewees noted that they were not allowed to see patients who were confirmed positive or awaiting COVID test results. Concern for spreading the virus through the facility led to hospitals limiting providers in all rooms. In one interview, a CCLS noted, “they wanted to minimize how many times we were going over to the bedside. So, I might just poke over and hand something to the parent, but it wouldn’t be a lot of hands-on work.”
Lack of Volunteer Support
All participants indicated that volunteer programs were largely or entirely suspended at their facilities. As a result, patients who were already isolated and confined to their rooms missed the opportunity for additional support interactions, including play, with volunteers. In the words of one participant, “We serve an urban population so we’d sometimes have patients that weren’t able to have anyone at bedside, just due to their family situation. So not having any volunteers, not having any extra staff, that’s really hard.”
Participants discussed the critical role of volunteers for supporting patients and families. One interviewee noted that “our volunteer group, they make up probably ninety percent of the functionality of our hospital.” Another CCLS mentioned that their loss of volunteers was one of the reasons they were kept on full-time, stating that “we were needed because we lost 120 volunteer support.” This lack of volunteers created added stress for CCLSs as they attempted to complete tasks normally handled by volunteers while continuing to provide child life services.
Limiting Access to Play Materials
Playrooms are instrumental in making hospital environments more child friendly. They allow a child to get out of their room and spend time learning in the way children learn best—through play. However, with increased facility restrictions, playrooms were one of the first areas to be closed. All interview participants mentioned their playrooms had closed for at least some time. With playrooms closed, facilities often had to give materials to patients to keep. This participant’s experience was similar to many others, “We ended up using single use, just giving away a lot of single use items that we had left over from Christmas donations.”
While participants were grateful for the generous donors who supplied items to give away, children lacked variety in materials to keep them occupied and stimulated. As the pandemic continued and donations to the hospital were more heavily restricted, participants were also concerned that these supplies would be depleted.
A few participants reported that they were beginning to re-open playrooms for one-on-one play time. One participant stated, “We’re able to utilize the play spaces again but it has different rules than it used to. So, it can only be one patient in there at a time. We have to disinfect absolutely everything that was touched or looked at hardly to a different level than we were before.” Utilizing play spaces required more work, especially with the lack of volunteer support to help disinfect toys and equipment, yet this was a way to keep a small sense of normalcy and reduce both boredom and fear for children.
Research Question 2: How has the Work of Certified Child Life Specialists’ Been Impacted by COVID-19?
Two major themes emerged related to the role of CCLSs during the pandemic: child life specialists as essential and role expansion.
Child Life Specialists as Essential
Participants noted that their training and expertise in helping children and families deal with stress and anxiety in the medical environment in order to support psychosocial development and well-being was particularly important during COVID-19. As one participant stated,
For the people who are sick it’s terrifying and they are experiencing it in such a frightening way that’s like nothing they’ve ever seen or heard before… [During] this time of uncertainty and anxiety and isolation patients and families are more at risk than ever for psychosocial consequences that come from a hospitalization.
While CCLSs believed what their expertise was essential, initially some were concerned about whether their employer would recognize their importance. One participant noted, “I am happy that we continue to have a job because that was something we were really worried about is if we would be furloughed. We were really worried we wouldn’t be seen as essential.”
Another participant stated, “I am very, very fortunate that my team is very well-respected, and we were seen as essential from day one. There was no question asked.” While CCLSs at a few facilities were furloughed or had reduced hours, most did not, and many that did were time-limited. One CCLS noted, “During this time, it has just really shown that they value what we do and the impact of the skill set that we bring.” Of those who noted that their facility was highly supportive of them, many had supervisors who understood and valued their roles. Several CCLSs noted the importance of leadership valuing the field of child life. One participant discussed the support of the CEO,
He came from within the hospital, but he wants to know child life. He wants to know what our field is about and so I think because he values us, everyone else values us. So it is kind of a trickle-down effect.
This same participant mentioned that their previous CEO had not been supportive of child life, so having a leader who understood the work of CCLSs made a huge difference. Participants believed both leaders and staff who understood CCLSs’ work tended to see the value of child life and recognize CCLSs as essential. Knowledge about child life generally came from building relationships with CCLSs and seeing CCLSs in action. Understanding occasionally came from personal experience; for example, one participant discussed how the CEO at her facility was highly supportive of child life in part due to previous experience his family had when their child was hospitalized.
Role Changes and Expansion
Interviewees reported their roles changed as they sought ways to support children, families, and staff during this crisis. Three sub-themes emerged including: increased use of technology; resource development; and providing instrumental and emotional support to other medical staff.
Increased Use of Technology
A number of facilities increased their use of technology as a way to interact with patients and families while reducing physical contact. Technology was used to allow additional medical staff to join a room and interact virtually with patients without potential COVID-19 exposure for the staff or patient. Technology was also used to help families stay connected with hospitalized patients. CCLSs could interact with children and families virtually to continue to engage in work they typically do, such as helping children and caregivers by explaining medical procedures and talking to them about coping strategies. Some CCLSs played a substantive role in expanding technology in their facilities. One participant had the following to say,
I’ve taken on an additional role of being really involved in deploying iPads and that technology throughout our hospital. The initial idea was to have a way to communicate with COVID patients and decrease our risk to staff… we quickly realized there was a need for any other patient when they don’t have visitors to be able to connect with their families.
Another example of how CCLSs used technology to help keep children distracted and entertained was by using closed-circuit television. One participant explained how this worked at her facility, “we would all spend about a week filming content and then the last two days of the week providing resources and supplies that the kids would need to actually engage in the content.”
Several CCLSs were quick to note that while technology was useful, it was no substitute for being physically present to support children and families. Times of loss were of particular concern. As one participant stated, “Personally, the most difficult thing has been the grief work virtually or on the phone… it’s just been so hard to navigate meeting those really deep emotional needs.” This underscores the emotional toll of the pandemic on families and healthcare workers.
Resource Development
CCLSs spent significant time developing resources for children, families, and medical staff including videos and handouts that could be used to help staff or caregivers support children when CCLSs were not able to be in the room. Medical settings looked dramatically different leading CCLSs to develop resources to prepare children and caregivers for what to expect. One participant responded, “we did a lot of education and PR and marketing for how to support your child through a pandemic and isolation and what it means to be in the hospital now.” Several CCLSs discussed developing resources for children to explain what to expect from a COVID test, and for adults to explain how to support children through that process. Participants also produced resources to help children understand COVID-19 and for parents on how to talk to their children about the pandemic. For some CCLSs, this led to related community outreach. As one CCLS noted, “In the past five or six months I have probably spoken to five or six parenting groups about how to talk to their kids about COVID.”
Providing Instrumental and Emotional Support to other Medical Staff
Participants discussed a variety of ways they used their skills to provide instrumental support to other medical professionals. One important way several CCLSs assisted was providing resources and working, often virtually, with children who had a loved one who was very ill or dying from COVID-19. While participants noted that they were occasionally requested to assist in a similar manner prior to the pandemic, this role expanded during COVID-19.
CCLSs noted the need to be flexible and help wherever needed. Many expressed the importance of taking the initiative to complete tasks that are not part of their jobs when others need support. For example, as one participant discussed working in the emergency room,
I don’t have a kid to see right now. I’m not just gonna sit there and wait for the next kid while everybody else is running around crazy. I’m gonna answer call lights and I’m going to help turnover a room. I am going to run specimens to the lab, really integrate as a part of the greater team.
Some CCLSs volunteered to take on different roles. For example, since volunteers were typically not allowed, some CCLSs spent time working at their facilities’ welcome desk conducting visitor screening. Strict visitor policies meant this was sometimes a challenging job as people were often frustrated or angry that they were not allowed to visit a loved one. Child life training was useful in this role as one participant stated, “We are using our child life skills, only on an adult level, because we have to advocate for the family… We have to also bring a sense of calm to a family member.”
In addition to supporting staff by assisting with patient care in a variety of ways, several CCLSs reported they took on a role of being a source of emotional support for other staff. One participant talked about how leadership and staff viewed CCLSs, “They really felt that our role as a psychosocial supporter of children and families, I think they really saw how that transitioned well to helping staff.” This participant discussed how staff began to seek CCLSs out as a source of support for debriefing about their experiences. Ultimately this CCLS joined a team that went on weekly wellness rounds providing support to staff. She discussed this role as,
Going around and just providing a listening ear to my coworkers who I didn’t know well, so mostly on the adult emergency side who had been through so much and seen so much, you know with having to trach patients multiple times a day and you know, the death that they saw and were dealing with.
Other CCLSs supported staff emotionally by infusing moments of fun or celebration into otherwise stressful days. For example, one participant talked about how her facility celebrated when people with COVID were released from the hospital. Code “happy” was announced and available staff would clap and cheer, and this participant would bring a bubble machine to the celebration. Staff enjoyed the fun she brought as she reported, “they know that I have bubbles and that I am going to throw them out at any point in the day.”
Another participant discussed how CCLSs in her facility used their creativity in the form of chalk art on the sidewalks around the hospital thanking and supporting their colleagues for their important work during this difficult time. She reported the response to the chalk art,
It blew up around here and our public relations team made bulletin boards out of them. And just the feedback that we got from the staff was nice…. people saying, oh we were crying when we saw it when we were leaving for the day, you know so this helped them to feel like this means something to people.
Research Question 3: What are CCLSs’ Recommendations Based on What They Learned During the Pandemic?
Participants identified the pandemic as a time of confusion but also a time of significant learning with potential for long-term improvements for patient care. Their recommendations centered around four themes, including: evaluating policy; increasing understanding of child life services by building relationships with medical teams; increasing awareness of the role of child life beyond medical professionals; and supporting and learning from one another.
Evaluating Policy
Participants acknowledged COVID-19 brought unprecedented challenges and understood that information was changing daily. However, this made it difficult to determine the best course of action to keep patients and staff safe and to slow the spread of COVID. All participants struggled with visitation policies noting that while physical safety was critically important, the negative consequences for children’s and families’ emotional health must be balanced. Participants felt some policies were neither patient- nor family-centered. For example, one participant expressed frustration with the visitor policy, “We’re not allowing two parents at bedside right now, we’re only allowing one and our facility really prides themselves on caring for the whole person and to me, that’s not caring for the whole person.”
Participants felt some policies were arbitrary and could be improved upon while adding little, if any, additional risk. In the words of one CCLS,
It would be good to have two parents able to be here at the same time from the beginning. From an infection standpoint, I don’t really understand how that was limiting exposure necessarily if they were both here just at different times.
Others noted the additional challenges these policies placed on families. For example, one participant noted, “caregivers would have to change out no less than every 12 hours…that’s just not feasible for many of our families for all kinds of social reasons.”
Policies around patient access were also frequently discussed, particularly by participants who had limited access to patients, such as not being allowed into their rooms. While participants understood the rationale for these changes, they also felt that patients and families needed their services now more than ever. One participant stated,
Families are at more risk than ever for the psychological, psychosocial consequences that come from hospitalization, especially in the PICU [Pediatric Intensive Care Unit]…more than ever it’s my job in the capacity that I can to continue to provide the best services I can as equitably as I can.
Participants felt policies and rules that keep CCLSs from providing their services negatively affected coping and development for both children and their families. In the words of one participant,
I’ve tried to articulate to my staff, you know, remember this is changing their developmental course as it is happening every day. So more than ever, our job is to assess that impact and to help kids and families make sense of what’s going on in their world because they don’t come to the hospital and leave that context at home… and then whatever experience they have here in the hospital shapes how they go back out.
Increase Understanding of the Value of Child Life by Building Relationships with Medical Teams
Participants repeatedly noted the importance of building relationships with medical staff to become an integral part of the team. Those who reported feeling essential during the pandemic attributed this to leadership and staff understanding and valuing the work of CCLSs. As one participant stated, “what I learned, or what was magnified for myself, was the value of teamwork and really getting to know your coworkers and being the support to one another really helps with patient care.”
Participants reported the best way for staff to learn the value of CCLSs is by building relationships and allowing others to see child life in action. For example, one participant reported,
Two years in, now that I have built relationships with all of these people, they are like, oh, ‘yeah we didn’t understand why we needed you when your first started, and you did the lunch and learn, but we were like why do we need you, It seemed silly and extra and what do they mean she comes and plays the kid so they were like yeah, we completely didn’t understand why we needed you and totally judged that we had you and now you are a very valued and important member of the radiology team and we don’t know how we did it before you got here.’
Another participant stated,
When I started in my unit, my nurses didn’t really like child life. And they actually have told me, like now, 13 years later. ‘When you started, we really did not like child life that much and we experienced that it took a long time when the child life specialists did interventions with us like blood draws. So we would actually wait until you went to lunch and do the blood draws.’ They’re like ‘but then we got to know you and we learned that you actually suggested stuff that made our lives so much easier and then we did not wait until you went to lunch anymore.’
Participants noted by building relationships they are able to help other medical professionals understand how child life services improve patient care and family satisfaction which can positively impact a facility’s bottom line. As one participant noted, “you have to look at how is this going to change our patient’s experience and maybe make them want to come back here.” Another interviewee stated, “child life specialists bring so much to the table and may sometimes be the deciding factor in a family’s facility choice. Their ability to make the hospital environment more normal and inviting is unmatched.”
Increase Awareness of the Role of Child Life in the Community
Several participants discussed a variety of ways they contributed to supporting children and families while helping raise awareness about child life among the general public. For example, by presenting to parenting groups about how to talk with children about COVID, or writing blog posts. One participant discussed her work,
I’ve written blog posts for a hospital blog about how to help kids cope with natural disasters, how to cope with racism. I think if we keep our eyes open and see what’s happening in our world and feel that connection to our work that there’s lots of ways to get the word out [about child life].
Several other participants discussed working with hospital marketing departments to promote understanding of child life services which was often a win-win for CCLSs and the hospital, as sharing stories about children frequently contributed to increased financial and material (e.g., toys) donations to the facility. In the words of one participant, “many times the stories of child life start opening pockets.” She discussed ways her facility works to raise awareness of child life and its value to the medical team through local (e.g., radio interviews and newspaper articles) and social media. For example,
I try really hard to find great stories on pediatrics to highlight on our social media. And, you know, when I am doing loose parts play or a plastic anemia teaching or something of that nature, I am always mindful of something interesting for the community to learn a little bit deeper about what we do.
This participant then sends interesting videos she takes to development and marketing for professional editing before they are added to the hospital’s social media sites.
Supporting and Learning from One Another
CCLSs also valued the support they received from one another. Interviewees found the Association for Child Life Professionals (ACLP) useful for resources, idea sharing, and brainstorming ways to best support children and their families during the pandemic. In the words of one CCLS,
I appreciate the ACLP and the child life community at large as a very generous profession… it’s not a competition where we’re fighting to get the next resource out quicker than the other person and charging everybody for it. It’s always been a generous group of people trying to do our best as a broader community.
Participants also appreciated the ACLP’s online forums where members could ask questions and connect with one another. As one participant reported, “I keep track of the forum. I get all those emails. I’m on the director’s forum as well and that’s all been helpful when people are wondering what everyone else is doing.”
Some participants reported local and regional connections between child life specialists have grown stronger through the pandemic. One participant reported, “there’s a COVID-19 group of child life specialists that’s been really helpful. People are really willing to connect right now…I just feel like there’s a different level of connection and support out there.” Moving forward, some CCLSs recommended the ACLP, other organizations, and their facilities work on creating and organizing up-to-date resources and ways to efficiently share the most recent information based on what they learned during the pandemic.
Several participants discussed learning from the pandemic and working to improve education for CCLSs and medical professionals on best practices during a crisis. One participant noted that in the past few years there have been a variety of training opportunities for CCLSs to prepare to help with a range of disaster support, but these have been framed as optional. COVID-19 has shown “nobody is safe from all of these things, so we all need to be prepared for when something big changes, whether it’s a mass casualty situation, or a global pandemic, or a natural disaster.” She added, “if we could somehow position ourselves so that it isn’t if this happens but when this happens.” This participant suggested academic coursework should include disaster training. Overall, there was a consensus among many interviewees that the pandemic increased connections between various medical professionals. These connections can ideally be built upon beyond the pandemic as CCLSs support and learn from one another about best strategies for meeting the needs of children and families during a public health crisis.
Convergence and Divergence Across Data Types
Results across quantitative survey questions, open-ended survey questions, and qualitative interview data converged on a number of key findings including fear, impact on patient and family experiences, and the understanding and importance of child life services. In most cases, with one notable exception discussed below, open-ended survey questions and interview data resulted in similar findings to the quantitative data, and provided greater depth and understanding about emergent findings.
All three data sources identified fear as a common experience during the pandemic. CCLSs perceived caregivers as being concerned about their child or themselves contracting COVID in the medical setting. Content analysis of open-ended survey data identified fear and uncertainty among families and medical staff as the most difficult challenge in their role as CCLSs during the pandemic. Interviewees reported staff and families experienced significant fear resulting from increasing COVID-19 deaths in the United States. They also noted patients and families experienced increased fear and anxiety stemming from limited visitors and volunteers to support and occupy patients’ time.
Data from all three sources clearly emphasized that patients and families’ experiences in medical settings were significantly impacted by COVID-19. CCLSs noted changes as largely resulting from visitation restrictions that typically limited visitation to one or two parents or caregivers in both the content analysis and interviews. Survey data revealed siblings as the most impacted family members with content analysis and interview data identifying significant concern about the impact of near universal no sibling visitation on both the patient and siblings. Additionally, qualitative data elucidated that policies often changed and were not always clear to medical staff leading to inconsistent implementation serving as a source of frustration for staff and families.
All data sources suggested that many CCLSs feel their work is valued and understood by families and other medical staff. However, the survey data identified a portion of participants who did not feel as valued by medical staff or their employers. This is the one area of divergence as the interview participants all reported being valued and seen as essential by the other medical staff and by their facility’s administrators. It may be that those who were struggling with feeling valued did not want to discuss their experiences in an interview.
The work of CCLSs as being essential under normal conditions, and possibly even more so during the pandemic, was identified through all three data sources. Content analysis and interview data included examples of the wide range of supports CCLSs provided patients, families, and colleagues during the pandemic. Quantitative data revealed that the more CCLSs perceived medical professionals at their facilities as understanding the role of CCLSs, the more likely CCLSs were to feel valued during the pandemic. Both content analysis and interview data articulated this relationship with interviewees emphasizing the importance of building relationships with other medical professionals and educating others about the role of CCLSs.
Discussion
Consistent with findings of the Association of Child Life Professionals (2020a, 2020b, 2020c), both surveys and interviews in this study highlighted major changes in the experiences of pediatric patients and their families in medical settings during the COVID-19 pandemic. Results of the current study provide deeper insight into how COVID-related policy and programming changes have impacted the work of CCLSs and the family-centered supports available to children and families. Patient-and family-centered pediatric care recognizes the importance of family members’ well-being and involvement in supporting patient outcomes (American Academy of Pediatrics Committee on Hospital Care & Institute for Patient- and Family-Centered Care, 2012) and identifies parents as essential partners in the care of their children (Al-Motlaq et al., 2021; Vance et al., 2021). Policies enacted during the pandemic made it difficult to remain as family-centered as medical facilities typically strive to be.
Statistical and content analyses of survey items and thematic analysis of interviews revealed CCLSs believed some policy changes ran counter to the patient- and family-centered care, echoing concerns raised by other medical professionals (Al-Motlaq et al., 2021; Raphael et al., 2021; Vance et al., 2021). These changes also disrupted the ability of CCLSs to use evidence-based strategies to support patients and families. Siblings, extended family, and friends were not allowed, and volunteer positions were eliminated. In some facilities, CCLSs and other medical professionals were encouraged to limit direct contact time with patients. Playrooms were closed and children had greatly reduced access to other children and play materials to serve as distractions while in hospitals or clinics. These restrictions likely amplified feelings of fear and isolation for pediatric patients.
Experiences in medical environments can create substantial fear and anxiety for pediatric patients and their caregivers (Romito et al., 2021; Salmela et al., 2010; Wilson et al., 2010) can which contribute to long-term negative mental health outcomes (Landolt et al., 2011; Price et al., 2016). While participants understood policy and practice changes were necessary to help slow the spread of COVID-19, they were concerned that some changes dramatically increased stress for patients and families, while having limited impact on the spread of the virus. Participants in this study reported that pediatric patients were routinely limited to only one parent or caregiver at a time, which often resulted in the child being left alone and without support during caregiver visitation changes. Preventing both caregivers from being present together with the patient limited support for the child, as well as opportunities for caregivers to support one another, creating additional stress for children and their families and running counter to family-centered care. In cases where patients had two caregivers, both would ultimately interact with the patient and staff inside the hospital and frequently with one another outside of the facility. Participants believed the negative psychosocial impact on patients and their families of such policies frequently outweighed the likely minimal impact on COVID-19 transmission.
Siblings were identified by both survey and interview data as the immediate family members whose access to support services were most impacted. Supports to siblings were not available at most facilities from the start of the pandemic through the time of data collection (6 month into the pandemic). When a child is hospitalized, their siblings often struggle with feelings of confusion, sadness, anger, loneliness, and fear for their sibling’s health (Boles et al., 2020; Gill, 2020). They also experience less parental support as parents focus on the child with medical needs. Much like the hospitalized child, siblings benefit from therapeutic play, interventions, and support offered by child life specialists (Gill, 2020; Romito et al., 2021). However, since siblings were not allowed in medical facilities, most did not receive these important services. Participants also noted that some caregivers faced additional struggles associated with siblings not being allowed in medical facilities. Caregivers without childcare often had to make the difficult decision to either leave their hospitalized child alone without family support or leave siblings unattended in vehicles or other locations in order to be with their child receiving medical care.
Another policy that several interviewees believed was particularly damaging was not allowing any visitors for patients 18 years and older. While 18-year-olds are legally considered adults, many are still in high school and living with parents, and all are still developing problem-solving skills as their brains continue to develop rapidly until their mid-20s (Arian et al., 2013). Social isolation caused by hospitalization threatens adolescent mental, behavioral, and emotional stability (Boles et al., 2020), an issue likely exacerbated during the pandemic. Participants underscored that young adults may not be developmentally prepared to make medical decisions for themselves and should not be expected to do so without familial support.
Child life specialists in this study emphasized that their training aided in their ability to take on expanded roles in response to changing policies and practices associated with the pandemic. CCLSs are trained to work from a system’s perspective to provide psychosocial support for pediatric patients and their families in the medical environment (Boles et al., 2020; Lookabaugh & Ballard, 2018). Results from the quantitative survey data analysis, content analysis, and interviews suggest CCLSs’ services may be even more critical during the pandemic, as their training and skillset prepared them to support children, families, medical staff, and the larger community during this particularly difficult time. CCLSs’ provided support to children of adult patients with COVID-19, developed resources to assist parents’ and medical staffs’ efforts to support children during medical procedures when child life specialists could not be present, provided emotional support to other medical staff, and prepared resources for patients and the community to help adults talk with children about COVID-19.
The way medical facilities addressed the pandemic also illustrates the value of CCLSs in medical settings. A majority of the survey participants reported the number of hours they worked remained the same, or even increased, indicating they were often viewed as essential personnel. Most participants believed that medical staff at their facility at least moderately understood and valued their work, though both survey and interview data revealed there is work to be done to increase understanding of the value of child life services. Results from the multinomial regression highlighted that participants who felt their role was understood before the pandemic were more likely to feel valued during the pandemic. Interviews further illuminated that because CCLSs’ work was often valued by administrators and other medical staff, they were given the opportunity to provide needed support for pediatric patients and their families, medical staff, and the larger community during a worldwide health crisis.
Strengths, Limitations, and Future Directions
A main strength of this study is the mixed-methods design. Convergence of findings across quantitative survey data, open-ended survey questions, and interviews illustrate that salient themes that emerged among the interview participants were largely reflective of the broader study sample. However, the relatively small sample size limits generalizability of our findings. In addition, because currently the field of child life is composed primarily of White women (Association of Child Life Professionals, 2018), we did not collect demographic information about sex, race, or ethnicity, as male participants and participants of color may be easily identifiable by others in the field.
The participants in this study largely expressed feeling that medical professionals understood CCLSs’ roles, that their work was valued during the pandemic, and that they were generally satisfied with how their facilities handled the pandemic overall. This was especially true for participants who also agreed to participate in interviews. The experiences of CCLSs who felt less valued, or who had more negative perceptions of how the pandemic was handled within their facilities may therefore not be represented in the current study, and these results should be interpreted with some caution given the limited variability in responses. This study also focused solely on the perceptions of CCLSs. Future research with other medical professionals (e.g., nurses, physicians, medical social workers, mental health providers), administrators, and family members of pediatric patients would further aid in understanding the impact of COVID-19 policies on children’s and families’ experiences in medical environments, as well as their understanding and perceived value of the role of CCLSs.
Implications
As medical professionals work to “do no harm” it is imperative that they consider the psychosocial and mental health impacts of their work. The developmental and psychosocial expertise of CCLSs can provide important insights into best practices and policies for creating the patient- and family-centered environments medical professionals strive to cultivate. As COVID-19 begins to subside, there is an opportunity for medical professionals to collaboratively reflect on lessons learned from the pandemic. CCLSs are invaluable to these conversations as their voices can provide unique insights to ensure pediatric patients’ and their families’ psychosocial and emotional needs are met generally, and especially during times of a public health crisis.
A family-centered approach includes siblings of pediatric patients (American Academy of Pediatrics Committee on Hospital Care and Institute for Patient-and Family-Centered Care, 2012; Gill, 2020). Participants in this study emphasized the need to develop policies and resources to support siblings of pediatric patients when they are not permitted in medical facilities. Suggestions from participants included developing online or take-home resources for siblings to help them understand what is happening with their sibling as well as providing child care either directly (e.g., on- or off-site child care) or helping families connect with child care providers and providing financial assistance as needed. Providing supports for siblings can potentially decrease stress for both siblings and caregivers thus increasing siblings’ and caregivers’ ability to support the pediatric patient (Gill, 2020). Future policies should also attend to the impact of policies on young adults who may not be developmentally prepared in their late teens and early 20 s to face hospitalization and serious medical procedures alone.
More generally, the results of this study suggest there is need to raise awareness of the role child life specialists can play in reducing stress and promoting positive outcomes while children receive medical care. Medical education programs are ideal for introducing the importance of including CCLSs on medical teams, and continuing education and staff training could also be beneficial for raising awareness about the child life field. CCLSs would also benefit from collaborating with their facilities’ outreach and marketing teams to increase visibility of the important child and family-centered work CCLSs are doing in medical environments and in response to public health crises. Finally, child life specialists can raise awareness of the value of their training and services by building relationships with medical staff and showing the benefits of child life through their hands-on work with patients and families.
Compliance with Ethical Standards
Conflict of Interest
The authors declare no competing interests.
Ethics
This study was reviewed by the Institutional Review Board at Central Michigan University and all procedures were in accordance with its ethical standards.
Informed Consent
Informed consent was obtained from all individual participants in this study.
Footnotes
Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
- Al-Motlaq M, Neill S, Foster MJ, Coyne I, Houghton D, Angelhoff C, Rising-Holstrom M, Majamanda M. Position statement of the International Network for Child and Family Centered Care: Child and family centred care during the COVID-19 pandemic. Journal of Pediatric Nursing. 2021;61:140–143. doi: 10.1016/j.pedn.2021.05.002. [DOI] [PMC free article] [PubMed] [Google Scholar]
- American Academy of Pediatrics Committee on Hospital Care & Institute for Patient-and Family-Centered Care (2012). Patient-and family-centered care and the pediatrician’s role. Pediatrics, 128(2), 394–404. 10.1542/peds.2011-3084.
- Arian M, Haque M, Johal L, Mathur P, Nel W, Rais A, Sandhu R, Sharma S. Maturation of the adolescent brain. Neuropsychiatric Disease Treatment. 2013;9:449–621. doi: 10.2147/NDT.S39776. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Association of Child Life Professionals (n.d.). Becoming certified/eligibility. https://www.childlife.org/certification/candidates.
- Association of Child Life Professionals. (2018). Association of child life professionals: 2018 year in review. https://www.childlife.org/docs/default-source/default-document-library/aclp-2018-year-in-review.pdf?sfvrsn=454cb24d_4.
- Association of Child Life Professionals. (2020a, April). COVID-19 child life staffing and programming changes. https://www.childlife.org/docs/default-source/covid-19/covid-19-child-life-staffing-and-programming-changes-april-6-13-(2).pdf?sfvrsn=e7408a4d_2.
- Association of Child Life Professionals. (2020b, May). COVID-19 child life staffing and programming changeshttps://www.childlife.org/docs/default-source/covid-19/covid-19-child-life-staffing-and-programming-changes-may-4-11.pdf.
- Association of Child Life Professionals. (2020c, June). COVID-19 child life staffing and programming changeshttps://www.childlife.org/docs/default-source/covid-19/covid-19-child-life-staffing-and-programming-changes-june-1-8.pdf.
- Bauchner, H., Fontanarosa, P. B., & Livingston, E. H. (2020). Conserving supply of personal protective equipment—A call for ideas. Journal of American Medical Association, 323(19), 1912. 10.1001/jama.2020.4770. [DOI] [PubMed]
- Boles, J., Fraser, C., Bennett, K., Jones, M., Dunbar, J., Woodburn, A., Gill, M.A., Duplechain, A., Munn, E. K., & Hoskins, K. (2020). The value of certified child life specialists: Direct and downstream optimization of pediatric patient and family outcomes. Association of Child Life Professionals. https://www.childlife.org/docs/default-source/the-child-life-profession/value-of-cclss-full-report.pdf.
- Bosch OJ, Revilla M, DeCastellarnau A, Weber W. Measurement reliability, validity, and quality of slider versus radio button scales in an online probability-based panel in Norway. Social Science Computer Review. 2019;37:119–132. doi: 10.1177/0894439317750089. [DOI] [Google Scholar]
- Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3:77–101. doi: 10.1191/1478088706qp063oa. [DOI] [Google Scholar]
- Center for Disease Control and Prevention (n.d.). What you need to know about variants. Retrieved May 23, 2022 from https://www.cdc.gov/coronavirus/2019-ncov/variants/about-variants.html.
- Claridge AM, Hajec LP, Montgomery LP, Knapp BM. Child and parent psychosocial experiences of hospitalization: An examination of the role of child life specialists. Journal of Child Life. 2020;1(1):3–14. [Google Scholar]
- Chieng YJS, Chan WCS, Klainin-Yobas P, He H. Perioperative anxiety and postoperative pain in children and adolescents undergoing elective surgical procedures: A quantitative systematic review. Journal of Advanced Nursing. 2014;70(2):243–255. doi: 10.1111/jan.12205. [DOI] [PubMed] [Google Scholar]
- Coyne I. Children’s experiences of hospitalization. Journal of Child Health Care. 2006;10(4):326–336. doi: 10.1177/1367493506067884. [DOI] [PubMed] [Google Scholar]
- Creswell JW. A concise introduction to mixed methods research. Thousand Oaks, CA: Sage Publications; 2015. [Google Scholar]
- Creswell JW, Plano Clark VL. Designing and conducting mixed methods research. 3rd ed. Los Angeles, CA: Sage Publications; 2018. [Google Scholar]
- Gill MA. Making space for siblings in family-centered care. Pediatric Nursing. 2020;46:48–51. [Google Scholar]
- Grissim L, Kirkendall M, Jones M, Boles J. Group medical play and children’s self-reported fear in the pre-operative setting. Journal of Child Life. 2020;1(2):8–15. [Google Scholar]
- Herzer M, Godiwala N, Hommel KA, Driscoll K, Mitchell M, Crosby LE, Piazza-Waggoner C, Zeller MH, Modi AC. Family functioning in the context of pediatric chronic conditions. Journal of Developmental Behavioral Pediatrics. 2010;31:26. doi: 10.1097/DBP.0b013e3181c7226b. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Holden, J. (n.d.). Tracking coronavirus vaccinations around the world. New York Times. Retrieved May 23, 2022 from https://www.nytimes.com/interactive/2021/world/covid-vaccinations-tracker.html.
- Landolt MA, Ystrom E, Sennhauser FH, Gnehm HE, Vollrath ME. The mutual prospective influence of child and parental post-traumatic stress symptoms in pediatric patients. The Journal of Child Psychology and Psychiatry. 2011;53(7):767–774. doi: 10.1111/j.1469-7610.2011.02520.x. [DOI] [PubMed] [Google Scholar]
- Lewis JR, Erdinc O. User experience rating scales with 7, 11, or 101 points: Does it matter? Journal of Usability Studies. 2017;12:73–19. [Google Scholar]
- Lookabaugh S, Ballard SM. The scope and future direction of child life. Journal of Child and Family Studies. 2018;27:1721–1731. doi: 10.1007/s10826-018-1031-6. [DOI] [Google Scholar]
- Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills, CA: Sage Publications; 1985. [Google Scholar]
- McBride DL. The impact of visiting restrictions during the COVID-19 pandemic on pediatric patients. Journal of Pediatric Nursing. 2021;61:436–438. doi: 10.1016/j.pedn.2021.09.004. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Nabors L, Liddle M, Graves ML, Kamphaus A, Elkins J. A family affair: Supporting children with chronic illnesses. Child: Care, Health and Development. 2018;45(2):227–233. doi: 10.1111/cch.12635. [DOI] [PubMed] [Google Scholar]
- Nelson LP, Gold JI. Posttraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: A review. Pediatric Critical Care Medicine. 2012;13:338–347. doi: 10.1097/PCC.0b013e3182196a8f. [DOI] [PubMed] [Google Scholar]
- New York Times (2021, July 1). See reopening plans and mask mandates for all 50 states. https://www.nytimes.com/interactive/2020/us/states-reopen-map-coronavirus.html.
- Patton MQ. Qualitative research & evaluation methods. 3rd ed. Thousand Oaks, CA: Sage Publications; 2002. [Google Scholar]
- Price J, Kassam-Adams N, Alderfer MA, Christofferson J, Kazak AE. Systematic review: A reevaluation and update of the Integrative (Trajectory) Model of pediatric medical traumatic stress. Journal of Pediatric Psychology. 2016;41(1):86–97. doi: 10.1093/jpepsy/jsv074. [DOI] [PubMed] [Google Scholar]
- Raphael JL, Kessel W, Patel M. Unintended consequences of restrictive visitation policies during the COVID-19 pandemic: Implications for hospitalized children. Pediatric Research. 2021;89:1333–1335. doi: 10.1038/s41390-021-01439-0. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Romito B, Jewell J, Jackson M. American Academy of Pediatrics Committee on Hospital Care, & Association of Child Life Professionals. Pediatrics. 2021;147:1–10. doi: 10.1542/peds.2020-040261. [DOI] [Google Scholar]
- Roster CA, Lucianetti L, Albaum G. Exploring slider vs. categorical response formats in web-based surveys. Journal of Research Practice. 2015;11(1):1–19. [Google Scholar]
- Salmela M, Salanterä S, Aronen ET. Coping with hospital-related fears: Experiences of pre-school-aged children. Journal of Advanced Nursing. 2010;66:1222–1231. doi: 10.1111/j.1365-2648.2010.05287.x. [DOI] [PubMed] [Google Scholar]
- Sharpe D, Rossiter L. Siblings of children with a chronic illness: A meta-analysis. Journal of Pediatric Psychology. 2002;27:699–710. doi: 10.1093/jpepsy/27.8.699. [DOI] [PubMed] [Google Scholar]
- Shudy M, Lihinie de Almedia M, Landon C, Groft S, Jenkins TL, Nicholson CE. Impact of pediatric critical illness and injury on families: A systematic literature review. Pediatrics. 2006;118:S203–S218. doi: 10.1542/peds.2006-0951Bv. [DOI] [PubMed] [Google Scholar]
- Silvera GA, Wolf JA, Stanowski A, Studer Q. The influence of COVID-19 visitation restrictions on patient experience and safety outcomes: A critical role for subjective advocates. Patient Experience Journal. 2021;8:30–39. doi: 10.35680/2372-0247.1596. [DOI] [Google Scholar]
- Strauss A, Corbin JM. Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, CA: Sage Publications; 1990. [Google Scholar]
- Vance AJ, Duy J, Laventhal N, Iwashyna TJ, Costa DK. Visitor guidelines in the U.S. in children’s hospitals during COVID-19. Hospital Pediatrics. 2021;11(6):e83–e89. doi: 10.1542/hpeds.2020-00577. [DOI] [PubMed] [Google Scholar]
- Vance AJ, Malin KJ, Miller J, Shuman CJ, Moore TA, Benjamin A. Parents’ pandemic NICU experiences in the United States: A qualitative study. BMC Pediatrics. 2021;21(558):1–13. doi: 10.1186/s12887-021-03028-w. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Virani AK, Puls HT, Mitsos R, Longstaff H, Goldman RD, Lantos JD. Benefits and risks of visitor restrictions for hospitalized children during the COVID pandemic. Pediatrics. 2020;146:1–6. doi: 10.1542/peds.2020-000786. [DOI] [PubMed] [Google Scholar]
- Wilson ME, Megel ME, Enenbach L, Carlson KL. The voices of children: Stories about hospitalization. Journal of Pediatric Health Care. 2010;24(2):95–102. doi: 10.1016/j.pedhc.2009.02.008. [DOI] [PubMed] [Google Scholar]
- Wittenberg E, Saada A, Prosser LA. How illness affects family members: A qualitative interview survey. Patient. 2013;6(4):1–21. doi: 10.1007/s40271-013-0030-3. [DOI] [PMC free article] [PubMed] [Google Scholar]
- World Health Organization (n.d.). WHO coronavirus (COVID19) dashboard. Retrieved May 23, 2022 from https://covid19.who.int/.