key: cord-0718561-hxtz037z authors: McCarthy, Maria C.; Beamish, Jessica; Bauld, Catherine M.; Marks, India R.; Williams, Tria; Olsson, Craig A.; De Luca, Cinzia R. title: Parent perceptions of pediatric oncology care during the COVID‐19 pandemic: An Australian study date: 2021-10-09 journal: Pediatr Blood Cancer DOI: 10.1002/pbc.29400 sha: 017917a121e637d25024e7e0d2c3ca4726241929 doc_id: 718561 cord_uid: hxtz037z BACKGROUND: We examined parents’ perceptions of their child's oncology care during a period of significant COVID‐19 restrictions in Australia. METHODS: Parents of children, 0–18 years, receiving hospital‐based cancer treatment, completed a survey examining their COVID‐19 exposure and impact, information and knowledge, and perception of their child's medical care. Recruitment occurred between October and November 2020. RESULTS: Eighty‐four parents (95% mothers) completed the survey. Sixty‐seven percent of patients were diagnosed pre‐COVID‐19. The majority of parents (76%) reported negative impacts of COVID‐19 on family life, including parenting and emotional well‐being despite exposure to COVID‐19 cases being very low (4%). Family functioning and parent birthplace were associated with COVID‐19 impact and distress. Parents perceived the hospital as a safe place during the pandemic. Very few parents reported delaying presentation to the emergency department (12%). The majority identified no change (69%) or delay (71%) in their child's treatment delivery. Over 90% of parents were confident that COVID‐19 did not impact medical decision‐making. They felt confident in their COVID‐19 knowledge and sought information from trusted sources. Parents reported a positive relationship with their child's care team (93%); however, access to some support services was reduced. CONCLUSION: Understanding patient and family experiences of pediatric oncology care across international contexts during the pandemic is important to inform present and future health care responses. In the Australian context of low infection rates and strict community restrictions, parents perceived their child's oncology care to be relatively unaffected. However, findings indicate that family well‐being was impacted, which warrants further investigation. The onset of the SARS-CoV-2 (coronavirus disease 2019 ) pandemic in early 2020 has presented significant challenges to pediatric oncology care worldwide. At the beginning of the pandemic, the impact of the virus on children undergoing cancer treatment was largely unknown. 1 Specific concerns included (i) whether young patients would be more susceptible to the virus due to their compromised immune states 2 ; (ii) the extent to which oncology services would be suboptimal due to overwhelmed health care systems or reduction of patient-facing services 3 ; and (iii) the psychological impact on youth and their families who were already enduring significant stress associated with cancer diagnosis and treatment. 4 Australia is one of a handful of countries that have largely been able to maintain control of the virus, aided by geography, strict domestic and international travel restrictions, high levels of COVID-19 testing and contact tracing, and stringent "stay at home" orders. Within Australia, Victoria was the most affected state at the time. In March 2020, a State of Emergency was declared, and between March and October 2020, Melbourne experienced a total of 23 weeks of lockdown. During Victoria's second lockdown, the strictest restrictions were in place for 8 weeks, from August 2 to September 28, 2020. During this time, residents were permitted to leave their homes for 1 hour a day and for one of four reasons: exercise, essential shopping, caregiving, and essential work. No public gatherings were allowed, face masks were mandatory, and individuals could not travel more than 5 km The aim of this study was to understand the impact of the COVID- 19 pandemic and any associated changes on the health and well-being of children and families receiving hospital-based oncology care at the RCH. The current paper reports on parent-reported COVID-19 exposure and impact, their knowledge and information seeking, and their perceptions of their child's oncology care. A secondary aim was to examine whether demographic, medical, or family characteristics were associated with COVID-19 impact and distress. This cross-sectional study utilized an online survey comprising COVID- Participants were parents of children aged 0-18 years who were undergoing active oncology treatment at the RCH Children's Can- An open-ended question, "Please tell us about other effects of COVID-19 on your child/ren and family both positive and negative." Internal reliability for CEFIS has been found to be excellent with a strong factor structure and clinical utility. 6 For this study, internal consistency was low (α = .56) for Exposure and acceptable (α = .74) for Impact. Experience of Care (EoC) Survey The EoC survey was developed by an expert multidisciplinary team of RCH pediatric clinician-researchers to assess the impact of COVID- been shown to have good reliability and validity. 9 Internal consistency for this measure was α = .88. A total of 125 eligible participants were identified, 118 parents were approached to participate (seven were uncontactable), and 84 (76%) completed the survey within the 4-week study period ( Figure 1 ). There were no significant differences between completers and noncompleters for child age, sex, age at diagnosis, diagnosis category, time on treatment, and geographical location (p > .1). Table 1 provides participant demographics and medical details. Study participants were predominantly mothers (95%, n = 80). Most patients were diagnosed pre-COVID (67%), had acute lymphoblastic leukemia (ALL; 44%, n = 37), were admitted to hospital eight or more times (46%, n = 39), and spent 1 week or more in hospital (54%, n = 43). The mean number of COVID-19 exposure items endorsed on the CEFIS was 7⋅42 (range 0-25). All families were exposed to stay-at-home orders, with additional exposure items endorsed relating to educa- were moderately and significantly correlated. Most parents reported that their child felt safe in the hospital, with 25% (n = 20) reporting their child found it only slightly frightening (Table S1) . Oncology support services such as social work, mental health, art/music therapy, and education continued to be accessed by 57% of parents (n = 48). However, more than over one-third (39%, n = 33) reported some difficulty accessing services. Of those that accessed services, the majority were accessible face-to-face. Education services and social work provided many consultations via tele-health/telephone (60% and 40%, respectively), with approximately one-fifth of parents (19%, n = 16) finding this less satisfying than face-to-face. Nearly two-thirds of parents (62%, n = 52) reported their child was exposed to health professionals in full PPE with the majority "not at all" distressed by PPE (71%, n = 37/52). Eighteen patients (21%) experienced full PPE over 10 times a day. COVID-19 swabs were mostly performed on asymptomatic children (63%, n = 53) prior to a procedure (i.e., lumber puncture or surgery), while fever/temperature (21%, n = 18) and runny nose/cough (19%, n = 16) were other common reasons. The total number of swabs ranged from one to more than 20 swabs (median = 5). According to parents, more than half of the children experienced some distress prior to swabbing (56%, n = 45), one-third were "quite" or "extremely" dis- (Table 3) . Parents also expressed worry about their ill child contracting the virus, financial issues, and difficulties accessing some health care/charity services. Parents reported some positive impacts of COVID-19, which included increased quality family time, greater community hygiene standards, ability to work from home, and children's adjustment to online learning. The results of univariate and multivariable regression analyses examining associations between a selected set of child illness and family demographic factors and CEFIS COVID-19 Impact and Distress scores F I G U R E 2 Mean scores on COVID-19 Exposure and Family Impact Survey (CEFIS) impact items. Scores >2.5 indicate negative impact are presented in Table 2 . Increasing family dysfunction (MFAD) was associated with greater COVID-19 impact, while having a parent born outside Australia was associated with less overall COVID-19 impact and family distress. No other variables were found to be significantly associated with the CEFIS Impact and Distress outcome variables. This is the first Australian published study to report on parent perceptions of their child's cancer care during the COVID-19 pandemic. Parent participation coincided with a 161-day lockdown period, involving stringent community and hospital restrictions. Two-thirds of parents included in this study had a child diagnosed prior to the pandemic; the remaining parents were diagnosed during lockdown. All children were receiving active cancer treatment at the time of the study. In addition to stay-at-home orders, parents endorsed work/financial changes and changes to child education as the most frequent COVID- In both studies, parents endorsed their personal well-being, particularly anxiety and mood, as the most negatively impacted domains. These results suggest that measuring parents' subjective appraisals of COVID-19-related impacts may be important to guide psychosocial supports for families who are navigating not only the pandemic but also the stressors associated with their child's illness. were not associated with parent-reported COVID-19 impact or family distress, including whether a child was diagnosed pre-or during the COVID-19 lockdown period. Of note, however, poorer family functioning was associated with increased COVID-19 family impact. These findings are consistent with traumatic stress models, which posit the importance of psychosocial factors rather than illness and demographic factors in predicting outcomes. 16 Family separation and loss of support One parent caregiver 33 COVID-19 caused a lot of social isolation for our family during a very significant part of [child name] treatment. As a single parent the lockdown took away all forms of support I had available to cope with managing being a sole parent and full-time worker. Prior to COVID, we relied on [child name] grandparents for assistance with medical appointments and emotional support regarding [child name] illness. We were essentially alone during the most difficult time in our lives. Major psychological distress been unable to parent and look after our sick child together. The time we spent in hospital was unbearable, the strain of being alone with your sick child while processing a life-changing diagnosis made everything feel so much harder. My partner and I did not see each other for 2 weeks other than handing over our hospital pass in front of a security guard when we swapped over in the foyer of RCH. Disruption of normal routines and activities 13 Having two adults working from home and four kids in remote learning in a four-bedroom house was a real challenge for everyone. The kids were not learning as much as they could cause they were preoccupied with playing at home. Not being able to go to a playground, not having space, being able to travel -even a little COVID-19-related fear and anxiety 11 The family are a little frightened to leave the house because we don't want to bring any illness home to [child name]. Each time when [child name] had fever, I was so worried that we would get COVID at the Emergency. We were very stressed, scared, and anxious about keeping [child name] safe. Mostly involving [child name] already spending so much time away from school he has lost his confidence and spark. My older child has struggled greatly with not seeing friends. We have missed social interactions with people outside the home. Difficulty accessing to health care and charity services 6 [Child name] rehab was also significantly affected. Telehealth is not possible with a 3-year old. [Child name] is most saddened by the closure of the Starlight Room and the lack of volunteers and visitors who use to roam the ward and provide a welcome distraction for the kids. There is definitely a more intense feeling of isolation when staying on the wards under COVID. Work/financial implications 4 Major income was lost. I had to stop working at my second job due to lockdown and my son's diagnosis. This reduced our income, which caused a bit of stress financially. COVID swabbing 4 [Child name] has had nine COVID swabs. All for protocol not because she had any symptoms. [Child name] need to be tested of COVID-19 always before going to theatre, which really disturbed her on every take. Keeping us all together during this time has been very important but has also had a toll on our relationship, but we will get through it. The kids were fighting with each other because they were bored at home. Increases in spending quality family time together 11 It has been positive to connect as a family in new ways (e.g., movie nights at home, bike riding). Was a chance to bond as a family, be present with [child name] as parents, focus less on material possessions and more on doing things such as cooking as a family. Adjustment to online learning 9 Overall, they adjusted to home learning well and in some ways this was good for [child name] while had daily radiotherapy, he kept up with his school work. Schooling has been fantastic both with not having to do pick ups and drop offs and knowing that the younger child will not bring any illness home and his overall study and marks have improved. Work from home 6 Also, the time I wasn't able to work meant I could take [child name] to more medical appointments than I otherwise might have been able too. Husband works from home so that he is able to share [child name] cares. Extra hygiene 4 COVID has also offered a great reason for everyone to be extremely hygienic and wear face masks, which has meant it is not all about [child name] illness and is helping keep him safe, we hope this takes away some of his burden. To people a runny nose wasn't a big deal but to [child name] it could be. Now it's big deal for everyone. immigrant and refugee families is warranted given this preliminary Additional data, which are currently being analyzed for publication, may assist oncology health care providers and support organizations to identify, and potentially mitigate, the longer term psychological sequelae of these experiences in this vulnerable population. In conclusion, this study has identified that despite enduring some of the strictest lockdown measures worldwide, most pediatric oncology parents were pleased with the quality of their child's care during the COVID-19 pandemic. Access to COVID-19 information that was both trusted and specific to pediatric cancer and strict public health measures, which kept community and hospital infection rates manageable, possibly contributed to parent's perceptions of a safe clinical environment. Importantly, there was minimal impact on pediatric oncology care during lockdown. Despite these positive findings, family well-being was overall negatively impacted and the psychological impact of COVID-19 in this cohort will be important to explore in more detail to fully understand the child and family experience, particularly given pre-existing stressors associated with childhood cancer diagnosis. The authors declare that there is no conflict of interest. The study was granted ethical approval by the Royal Chil- The data that support the findings of this study are available from the corresponding author upon reasonable request. Early advice on managing children with cancer during the COVID-19 pandemic and a call for sharing experiences The COVID-19 pandemic: a rapid global response for children with cancer from SIOP Lessons after the early management of the COVID-19 outbreak in a pediatric transplant and hemato-oncology center embedded within a COVID-19 dedicated hospital in Lombardia, Italy. 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