Journal of Pediatric Psychology, 2021, 1–12 doi: 10.1093/jpepsy/jsab058 Original Research Article Impact of COVID-19 on Families of Pediatric Solid Organ Transplant Recipients Mireia Forner-Puntonet ,1,2,3,#,* MSC, Eudald Castell-Panisello,1,# MSC,  s Quintero,4 MD, MSC, Gema Ariceta,5 MD, PHD, Ferran Gran,6 MD, PHD, Jesu Ignacio Iglesias-Serrano,7 MD, Laura Gisbert-Gustemps,1,2,3,8 MD, PHD, Constanza Daigre,1,2,8 PHD, Pol Iban ~ ez-Jimenez,2 BSC, MSC, Mercedes Delgado,1 MSC, Gemma Espan ~ ol-Martın,1,2,3,8 MD, 1,2 9 Gemma Parramon, MD, Teresa Pont, MD, PHD, and Josep Antoni Ramos-Quiroga,1,2,3,8 MD, PHD 1 Department of Psychiatry, Hospital Universitari Vall d’Hebron, 2Group of Psychiatry, Mental Health and Addictions, Vall d’Hebron Research Institute (VHIR), 3Department of Psychiatry and Legal Medicine, Universitat Autonoma de Barcelona, 4Pediatric Hepatology and Liver Transplant Department, Hospital Universitari Vall d’Hebron, Universitat Autonoma de Barcelona, 5Pediatric Nephrology Department, Hospital Universitari Vall d’Hebron, Universitat Autonoma de Barcelona, 6Pediatric Cardiology Department, Hospital Universitari Vall d’Hebron, 7Pediatric Respiratory Medicine Department, Hospital Universitari Vall d’Hebron and 8Biomedical Network Research Centre on Mental Health (CIBERSAM), 9Department of Donor and Transplant Coordination, Hospital Universitari Vall d’Hebron # Mireia Forner-Puntonet and Eudald Castell-Panisello shared first authorship. All correspondence concerning this article should be addressed to Mireia Forner-Puntonet, MSc, Department of Psychiatry, Hospital Universitari Vall d’Hebron, Passeig de la Vall d’Hebron 119-129, 08035 Barcelona, Spain. E-mail: mforner@vhebron.net Received 15 December 2020; revisions received 2 May 2021; accepted 4 May 2021 Abstract Objective The COVID-19 pandemic and lockdown measures have had a clear psychological im- pact on families, and specifically those with children with chronic illnesses have reported greater overloads and exhaustion. The objective of this study was to evaluate the exposure, impact and ex- perience of the pandemic on families of pediatric solid organ transplant (SOT) recipients compared to families of healthy children and adolescents. Methods We recruited 96 families, 48 with a pe- diatric SOT recipient and 48 healthy controls, matched by child age and gender. A primary care- giver from each family responded to an online sociodemographic questionnaire and the COVID-19 Exposure and Family Impact Survey (CEFIS), which explores the exposure, impact and experience of the pandemic and lockdown on families. Results Exposure to the pandemic was greater in families of healthy children and adolescents. The impact was mostly negative in both groups: care- givers reported increased anxiety (76%) and mood disturbances (71.9%) and hindered quality of sleep (64.6%) and health habits (58.3%). On the positive side, family relationships improved. Qualitatively, the SOT group positively perceived isolation and established hygienic measures as protective and destigmatizing, although they reported fear of virus transmission to their child. Conclusions The psychological impact of the pandemic has been similar in both groups, al- though families of transplant recipients have protected themselves more, probably because they are used to prevention measures and they see contagion as a graver risk. Additionally, SOT recipi- ents’ families presented some idiosyncratic elements, especially a decrease in their perception of stigma associated with the medical condition. C The Author(s) 2021. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. V All rights reserved. For permissions, please e-mail: journals.permissions@oup.com 1 2 Forner-Puntonet et al. Key words: COVID-19; family; pediatric transplantation; psychological impact; solid organ transplantation. Introduction from the hospital and avoiding crowded places). Due to its level of severity and spread the World Pediatric transplantation may elicit stress responses Health Organization declared the coronavirus disease and diffuse psychopathological symptoms in children (COVID-19) outbreak a pandemic (Cucinotta & or adolescents, for instance post-traumatic stress Vanelli, 2020). Spain has become one of the most af- symptoms (Inspector et al., 2004; Stuber & Shemesh, fected countries in Europe (Ceylan, 2020) and, when 2006). Also, parents show significant parenting stress COVID-19 reached its peak, a national emergency and pre- and post-transplantation burden, results con- was declared, under which a total lockdown of the en- sistent with those referred to pediatric patients with tire population was imposed, followed by a progres- chronic disease (Cousino et al., 2017). sive deconfinement afterward (Royal Decree for a From an organic perspective, the impact of state of alarm 463/2020, 14th of March). COVID-19 in transplant recipients was largely un- The psychological impact of the pandemic and the known. New studies do not indicate an additional risk resulting containment measures, in particular, quaran- to child and adult immunosuppressed patients with tine, can be wide-ranging and have long-term effects COVID-19 compared to other comorbidities (Hage (Brooks et al., 2020). For families the impact of pan- et al., 2020; Minotti et al., 2020), with intensive care demics is undeniable (Fong & Iarocci, 2020): the clo- unit admission and mortality rates comparable to sure of schools, changes in family dynamics and those of the general population (Raja et al., 2021). relationships, as well as the need for parents to work Consensus of experts recommended continuing the from home and take care of their children simulta- established therapies (Eibensteiner et al., 2020) al- neously. Under these circumstances, new concerns though the risk should be evaluated on a case-by-case have arisen among parents, such as the financial sta- basis (Perez-Martınez et al., 2021). Moreover, the dis- bility and physical health of the family, their children’s ease course of COVID-19 is often mild in pediatric isolation from peers and teachers, the management, populations (Götzinger et al., 2020; Ludvigsson, duration, and outcomes of homeschooling or their 2020) regardless of their immune status (D’Antiga, own ability to manage the situation at home 2020), although a possible worsening in their usual (Fontanesi et al., 2020). Conflicts at home, together treatment adherence and self-management should be with anxiety and depression levels, have increased for expected (Plevinsky et al., 2020). all family members (Orgiles et al., 2020), including Zhao et al. (2020) studied the effect of COVID-19 children (Wu et al., 2020). on families with children on dialysis and kidney trans- If the pandemic and its consequences represent a plantation. Almost 80% of the participants thought major burden on families (Fegert et al., 2020), there that COVID-19 negatively affected their child’s treat- are some factors that may further increase this load: ment, and a higher prevalence of depressive and anxi- for instance, parents of children with physical or men- ety symptoms among caregivers was found. Also, in tal health conditions report more parental burnout an online survey addressing parents of pediatric liver and less perceived social support (Fontanesi et al., recipients, major concerns were early recognition of 2020). Parents of children with chronic illnesses, COVID-19 symptoms, doubts regarding a worse out- among them families of pediatric solid organ trans- come in their child if infected, the impact on the child plant (SOT) recipients, have been especially worried if parents were working in the medical field, and avail- about how COVID-19 could impact their children’s ability of medication during lockdown (Menon et al., health (Menon et al., 2020). 2020). Also, previously affected psychosocial aspects Pediatric SOT is the treatment of choice for a large of SOT recipients (e.g., peers’ acceptance or illness in- number of end-stage renal, hepatic, cardiac, or pulmo- trusiveness) (Fredericks et al., 2014) could be exacer- nary diseases (LaRosa et al., 2011). The total number bated by a more severe isolation or the reported extra of pediatric SOT recipients in Spain is 1596 (308 the fear of contagion. total number in Catalunya, the region in which this Although research has not indicated a worse medi- study was carried out) (OCATT, 2020; ONT, 2020). cal prognosis in the case of SOT recipients who have It is important to consider that going through a SOT been infected with COVID-19 (Goss et al., 2021), a process involves a change from a life-threatening dis- negative effect on patients’ or caregivers’ mental ease to a chronic health condition (Annunziato et al., health could be expected (Hage et al., 2020). In a con- 2012), which requires the adoption of new habits and text of total uncertainty for transplant recipients and prevention measures (e.g., periodic follow-up appoint- caregivers (Massey & Forsberg, 2020), issues such as ments, frequent handwashing, wearing a mask to and fear of contagion, difficulties accessing hospital care COVID-19 and Families of Pediatric SOT 3 settings or transplant-specific concerns about health- adolescent without chronic illness, 18 years of age or habits prevention can be a major cause of stress in the younger, (3) having user-level computer skills, and (4) families of immunosuppressed patients. agreeing to take part in the study. Language barriers The aim of this study was to evaluate and compare in respondents were set as exclusion criteria, as the the exposure, impact, and experience of COVID-19 used questionnaire was in Spanish. The approval of on the families of SOT recipients and healthy controls. the Ethics Committee (PR(AG)271/2020) of the We hypothesized that SOT recipients’ families would Hospital Universitari Vall d’Hebron was obtained for be less exposed to COVID-19, although the current the research. situation of the pandemic may produce a greater psy- chological impact on them. Moreover, we aimed to Procedure explore the personal experiences of families of SOT We used convenience sampling, recruiting as many pediatric recipients and to compare them with families participants as possible in a 1-month period to capture of healthy children and adolescents. a concrete moment within a constantly changing envi- ronment. The sample of the SOT group was obtained through families of consecutive patients who con- Methods sulted the different pediatric transplant teams (hepatic, Context renal, cardiac, and pulmonary) at the Hospital In Spain, a State of Alarm was declared from March Universitari Vall d’Hebron in person or on-line. These 13 until June 21, 2020. A strict home lockdown was caregivers were contacted once by email, enabling re- imposed (in-person educational, commercial, and so- mote adapted recruitment methods, as face-to-face cial activities were suspended, only essential jobs were contact was not recommended (Stiles-Shields et al., allowed to continue their activity), which was kept in 2020). The email included access to a web survey ap- place until early May (Royal Decree for a state of plication where information regarding the study alarm 463/2020, 14th of March). At that time a (study goals, participation rights, and data treatment deconfinement process was started and carried out in procedure), the sociodemographic questionnaire and 4 phases. The main changes in Catalunya, were as fol- the assessment instrument were provided. Caregivers lows: Phase 1 (starting May 11) allowed people to could only complete the survey after having given their leave home to visit relatives; Phase 2 (starting May 25) electronic consent to participate. Of the 120 caregivers allowed bars, restaurants and larger stores to open; belonging to a family with a SOT recipient that were Phase 3 (starting June 8) allowed higher mobility be- contacted, 48 ended up responding to the full survey tween different geographical areas; Phase 4 (starting (40% answer rate). June 22), a period also informally known as “new nor- To recruit the control group participants, all the mality”, allowed free mobility and social gatherings, SOT group families agreed to remit the received email but several restrictions remained in place, such as so- to three to five families with a child of the same age cial distancing, mandatory masks in public places and and gender as their child. They sent it to a total of 161 limitations on occupant capacities for commerce and caregivers of healthy children of whom 89 answered public events. In late July, recruitment of the sample (55.3% answer rate). Control group participants were began, and data collection was conducted over matched with SOT group participants by children’s 31 days, during August 2020. At that time, there was age and gender and were selected in order of response. an uptick in new cases of COVID-19 (6043 new cases in one week in Catalunya) while mortality rates Instruments remained low (7 deaths in 1 week). This increase was The following data regarding the socio-demographic the start of what would later be known as the “second and clinical characteristics of the primary caregiver wave” (Centro de Coordinaci on de Alertas y were collected: age, gender, education level, number Emergencias Sanitarias, 2020). of children, and relationship with the child or adoles- cent. Regarding the child or adolescent, the following Participants information was requested: age, gender, and the basic The total study sample consisted of 96 caregivers, 48 disease for which the child or adolescent had required of whom represented families in which one member the transplant, type of pediatric SOT, age, and years had undergone a pediatric transplant process (SOT since the transplantation, if applicable. Age at trans- group) and 48 families of healthy children and adoles- plantation was collected as studies point out that cents (control group). Inclusion criteria were: (1) being younger age is associated with more negative parent an adult caregiver in a family of a pediatric patient, and family functioning (Cousino et al., 2017). 18 years of age or younger, who had gone through a Moreover, the time since transplantation was included SOT (renal, hepatic, cardiac, or pulmonary), (2) being because, in the early post-transplant years, families an adult caregiver in a family with a children or face many challenges that may impact the entire 4 Forner-Puntonet et al. family system (Brosig et al., 2014), which could be ex- The researchers E.C.P. and M.F.P. independently ana- acerbated in the COVID-19 context. lyzed all data with the support of the Atlas.ti program, The COVID-19 Exposure and Family Impact and several themes were extracted. After the first anal- Survey (CEFIS), to be completed by a caregiver, was ysis, a third investigator (C.D.) compared and triangu- also administered. This instrument was developed by lated outcomes and identified shared aspects. All the Center for Pediatric Traumatic Stress (2020), using discrepancies were resolved through consensus by all a rapid iterative process, in late March/early April three researchers. 2020. The CEFIS is available in English and Spanish. It conceptualizes exposure to potentially traumatic Results aspects of COVID-19 and assesses the impact of the pandemic on the family, evaluating exposure, impact, Quantitative Results and personal experience of COVID-19 in the family. Sociodemographic characteristics of caregivers and The section on exposure consists of 25 items with di- children in each group can be seen in Table 1. All care- chotomous responses (yes/no) that measure the partic- givers who responded were the children’s parents, ipants’ degree of exposure to COVID-19 and related mostly mothers (80.2%); 52.1% of the children were events. The Total Exposure score is the sum of all the boys and the average age of the child sample was items. The section on impact consists of 12 items: 10 8.6 6 4 years (with an age range from 0 to 17 years items use a four-point Likert scale (with a “doesn’t old). The SOT group included 20 liver, 17 kidney, 10 apply” choice also available), rating the impact on heart, and 1 lung pediatric recipients. No significant participant’s and family’s life, and 2 items use a 10- differences were found in any of the variables between point distress scale. The Total Impact score is the the two groups. mean of the 10 first items. As the authors indicate, sev- eral items (particularly Items 3, 4, and 5) received es- Exposure pecially high missing or not applicable values because Table 2 summarizes the quantitative data extracted of their content, and cases with four or more missing from the CEFIS related to exposure to consequences responses were excluded from the computation of the of COVID-19 and associated mitigation measures. Total Impact score. Higher scores indicate greater lev- Regarding the total exposure score, the control group els of exposure and impact. The last part, personal ex- reported significantly higher scores than the SOT perience, is an open-ended question inviting the group. The areas most affected by the lockdown meas- participant to describe the positive or negative effects ures were home and family, education, and work. of COVID-19 not covered in other questions. The Although half of the families experienced a decline in CEFIS asks the respondents to answer based on what income, none made reference to difficulties obtaining they experienced in the period from March 2020 to food, and few families reported difficulties obtaining the moment of answering the survey, therefore encom- medicines or other necessities. Although no significant passing the full period since the pandemic’s repercus- differences were found in the containment measures sions began to be felt in Western countries. (e.g., staying at home, school closures, reduced work hours, or job loss), differences were found in the de- Data Analyses gree of exposure to COVID-19. The two items that Quantitative Data remained significant even after applying the All quantitative data collected were analyzed using the Bonferroni correction are those concerning whether a SPSS version 21.0. Chi-Square tests were run to com- family member was exposed to someone with pare outcomes between groups in qualitative variables COVID-19 and whether a family member was hospi- and Student’s t-tests in quantitative variables. Pearson talized for COVID-19. No significant associations correlations were calculated between variables and were found regarding exposure and the age at trans- Cohen’s d was computed for effect sizes. To avoid plantation (r ¼ .232, p ¼ .112) and years since the Type I error, the Bonferroni correction for multiple transplant (r ¼ .093, p ¼ .531). testing was also used. Impact Qualitative Data Regarding the impact experienced by families of both All qualitative data were collected from the open- groups (see Table 3), caregivers reported on their own ended CEFIS question “please tell us about other distress (M ¼ 5.21, SD ¼ 2.64) and that of their child- effects of COVID-19 on your child/children and your ren’s (M ¼ 4.77, SD ¼ 2.12). We highlight that 76% family, both negative and/or positive”. An exploratory of all caregivers also perceived an increase in their thematic analysis was performed to analyze all quali- anxiety levels and 71.9% a worsening in their mood. tative data, no prior hypotheses were considered, us- Adherence to health habits were also hindered, 64.6% ing an inductive approach (Braun & Clarke, 2006). of the respondents suffered from a poorer sleep quality COVID-19 and Families of Pediatric SOT 5 Table I. Participants Characteristics Total sample SOT group Control group X2 or t p n 5 96 n 5 48 n 5 48 N (%) or Mean 6 SD N (%) or N (%) or Mean 6 SD Mean 6 SD Gender .066 .798 Male 19 (19.8) 9 (18.8) 10 (20.8) Female 77 (80.2) 39 (81.3) 38 (79.2) Age 42.7 6 8.2 42.4 6 10.5 42.9 6 5.1 .308 .759 Education 9.502 .051 Primary school 2 (2.1) 2 (4.2) 0 (0) Middle school 2 (2.1) 2 (4.2) 0 (0) High school 18 (18.7) 13 (27.1) 5 (10.4) College/university 62 (64.6) 26 (54.2) 36 (72.9) Postgraduate 12 (12.5) 5 (10.4) 7 (14.6) Relationship .066 .798 Father 19 (19.8) 9 (18.8) 10 (20.8) Mother 77 (80.2) 39 (81.3) 38 (79.2) Number of children 1.8 6 0.6 1.6 6 0.6 1.8 6 0.6 1.585 .089 Gender of pairing children 0 1 Male 50 (52.1) 25 (52.1) 25 (52.1) Female 46 (47.9) 23 (47.9) 23 (47.9) Age of pairing children 8.6 6 4 8.6 6 4 8.6 6 4 0 1 Transplant type — — Renal 17 (17.7) 17 (17.7) — Hepatic 20 (20.8) 20 (20.8) — Cardiac 10 (10.4) 10 (10.4) — Pulmonary 1 (1) 1 (1) — Age at the time of 464 464 — — — transplantation Years from transplant 5 6 3.8 5 6 3.8 — — — Note. SD ¼ standard deviation; SOT group ¼ solid organ transplant group. and 58.3% felt their physical health had worsened be- emphasizing negative aspects more than the positive cause of practicing less exercise. On the other hand, ones. 59.4% of the respondents reported an improvement in On the positive side, families from both groups de- the relationships among family members. Of the scribed spending more time with the family, enjoying parents of a child with a diagnosis of a chronic illness, being together and having a higher perception of fam- 75.7% reported feeling they were more capable of car- ily cohesion. Specifically, in the families of child and ing for them. No significant differences were found in adolescent receptors of a transplant, they reported be- terms of impact on the different items of the scale or ing used to health and safety measures related to its overall score. Also, a positive but low correlation COVID-19, so these did not represent an extra effort between the total exposure score and the total impact in their daily lives, and they also reported feeling more score was found (r ¼ .259, p ¼ .010). No significant protected by the fact that society, in general, was tak- associations were observed in impact and the age at ing more measures to reduce risk of infection. Many transplant (r ¼ .027, p ¼ .857) or years since the of the relatives believed the implantation and normali- transplant (r ¼ -.064, p ¼ .667). zation of these measures helped them to reduce the stigma they have sometimes felt for wearing masks, Qualitative Results having to maintain strict hand hygiene or undergoing Personal Experience isolation periods due to their child’s immunosuppres- A qualitative analysis of the results provided a clearer sion. In this group, parents reported some specific pos- picture of the impact of COVID-19 on families and, itive repercussions on health during the confinement, specifically, on families of SOT recipients. Table 4 such as a decrease in the number of infections and an summarizes the themes extracted from the open-ended increase in their children’s weight. responses of the caregivers in the control group and On the negative side, all parents showed an in- the SOT group. crease in worries, fears, and sadness, with caregivers Families from SOT recipients and controls both de- of transplant recipients specifically showing greater scribed negative and positive aspects of the pandemic, concern and fear about the risk of infecting their 6 Forner-Puntonet et al. Table II. Exposure to COVID-19 and Containment Measures in Families of SOT Recipients and Healthy Control Group Items of the exposure scale Total sample SOT group Control group X2 or t p n 5 96 n 5 48 n 5 48 N (%) or N (%) or N (%) or Mean 6 SD Mean 6 SD Mean 6 SD Order to “stay at home” 89 (92.7) 45 (93.8) 44 (91.7) .154 .695 Schools/child care centers were closed 96 (100) 48 (100) 48 (100) NA NA Children education was disrupted 66 (72) 32 (66.7) 34 (70.8) .194 .660 Unable to visit or care for a family member 72 (75) 33 (68.8) 39 (81.3) 2 .157 Family lived separately for health, safety or job demands 38 (39.6) 19 (39.6) 19 (39.6) .000 1 Someone moved into our home 4 (4.2) 1 (2.1) 3 (6.3) 1.043 .307 We had to move out of home 6 (6.3) 5 (10.4) 1 (2.1) 2.84 .092 Someone in the family was working outside home 37 (38.5) 16 (33.3) 21 (43.8) 1.099 .294 Someone in the family was a healthcare provider 19 (19.8) 4 (8.3) 15 (31.3) 7.940 .005 Difficulties getting food 0 (0) 0 (0) 0 (0) NA NA Difficulties getting medicine 1 (1) 0 (0) 1 (2.1) 1.011 .315 Difficulties getting health care when needed 10 (10.4) 3 (6.3) 7 (14.6) 1.780 .181 Difficulties getting other essentials 1 (1) 1 (2.1) 0 (0) 1.011 .315 Self-quarantined due to travel or possible exposure 20 (20.8) 11 (22.9) 9 (18.8) .253 .615 Family income decreased 48 (50) 27 (56.3) 21 (43.8) 1.500 .221 Someone in the family had to cut back hours at work 49 (51) 25 (52.1) 24 (50) .042 .838 Someone in the family was required to stop working 37 (38.5) 24 (50) 13 (27.1) 5.321 .021 Someone in the family lost its job permanently 4 (4.2) 2 (4.2) 2 (4.2) .000 1 Health insurance was lost 1 (1) 0 (0) 1 (2.1) 1.011 .315 Important family events were missed or cancelled 63 (65.6) 29 (60.4) 34 (70.8) 1.154 .283 Someone in the family was exposed to someone with 31 (32.3) 8 (16.7) 23 (47.9) 10.720 .001a COVID-19 Someone in the family had symptoms or was diagnosed 29 (30.2) 9 (18.8) 20 (41.7) 5.978 .014 with COVID-19 Someone in the family was hospitalized for COVID-19 10 (10.4) 1 (2.1) 9 (18.8) 7.144 .008a Someone in the family was in the ICU for COVID-19 6 (6.3) 0 (0) 6 (12.5) 6.400 .011 Someone in the family died from COVID-19 7 (7.3) 1 (2.1) 6 (12.5) 3.852 .050 Exposure total score 7.75 6 2.61 7.16 6 1.9 8.33 6 3.03 22.220 .029 Note. Percentages reflect affirmative answers to the items implying more exposure to COVID-19 pandemic. NA, Chi-square test was considered not applicable when the value was considered a constant. a The results are statistically significant after Bonferroni correction. SD ¼ standard deviation; SOT group ¼ solid organ transplant group. children. Moreover, both groups reported more sleep associated with the evolution of the pandemic have disturbances. They all highlighted the difficulty in played and continue to play an important role in the reconciling family, child education, work, and do- emotional well-being of much of the population. mestic aspects. Both groups of parents expressed a Patients with chronic illness is one of the population significant sense of unspecified uncertainty as well, groups that has been described as more vulnerable in with significant concerns in the case of the relatives the context of a health crisis such as the current one. of the SOT group due to the possible impact of In the context of uncertainty resulting from the evolu- COVID-19 on the graft or in their child’s medical tion of the pandemic, it was foreseeable that families evolution. of patients with chronic diseases, especially of those As far as the children were concerned, parents per- that were immunosuppressed, were likely to experi- ceived an increase in anxiety symptoms as well as an ence the pandemic with a greater degree of emotional increase in the amount of time spent using technologi- distress. There were many things about COVID-19 cal devices. Some of the aspects that concerned and patients with immunosuppressed status that were parents, in general, were their children’s loss of social still unknown, including the psychological impact of relationships and physical exercise habits. COVID-19 on the families of pediatric SOT patients. Our results show that families of pediatric trans- plant patients have been less exposed to COVID-19 Discussion than families of the control group. The former have The COVID-19 pandemic represents an unprece- practiced prevention measures for a longer period of dented cost at health, politics, economics, and social time and have probably developed their own resources welfare levels (The Lancet Public Health, 2020). to deal with isolation, therefore protecting themselves Likewise, the uncertainty, fears, sadness or anxiety more than the families of healthy children. Moreover, COVID-19 and Families of Pediatric SOT 7 Table III. Impact of COVID-19 and Containment Measures on Families of SOT Recipients and Healthy Control Group Items of the SOT group Applicable Control Applicable t p d impact scale n 5 48 items group items Cohen Mean 6 n 5 48 SD Mean 6 SD Parenting 2.38 6 0.96 39 2.47 6 0.85 47 .42 .672 .09 How family members get along with each 2 6 0.71 36 2 6 0.65 38 0 1 0 other Ability to care for child with an illness/ 2.05 6 0.66 37 260 3 .14 .89 .11 condition Ability to care for other children of the family 2.21 6 0.97 19 2.57 6 1.03 23 1.13 .264 .36 Ability to care for older adults or people with 2.69 6 1.03 13 3.13 6 1.01 23 1.24 .224 .43 disabilities in your family Physical wellbeing—exercise 2.91 6 0.91 44 2.82 6 0.99 44 .45 .656 .09 Physical wellbeing—eating 2.5 6 0.95 38 2.65 6 0.87 46 .76 .448 .16 Physical wellbeing—sleeping 2.91 6 0.89 43 2.82 6 0.86 45 .45 .652 .10 Emotional wellbeing—anxiety 3.07 6 0.75 45 2.98 6 0.85 46 .52 .602 .11 Emotional wellbeing—mood 2.93 6 0.79 44 2.87 6 0.78 45 39 .697 .08 Impact total score 2.55 6 0.63 2.67 6 0.62 .79 .432 .19 Distress in parents 4.88 6 2.59 5.54 6 2.68 1.24 .219 .25 Distress in children 4.69 6 2.29 4.85 6 1.94 .38 .702 .07 Note.SD ¼ standard deviation; SOT group ¼ solid organ transplant group. Applicable items: informs of the number of answers reported endorsed as applicable. in our clinical practice, we have observed that some because their comparison sample consisted of general parents of pediatric transplant recipients have asked population before the pandemic. Zgoura et al. (2020) medical teams for documentation demonstrating their found that life satisfaction in adults with a renal trans- children’s health status in order to limit their own ex- plant diminished when comparing before and during posure in their work environment. This extra effort to the pandemic, but without any differences between protect themselves is probably due to their fear, in transplant recipients and healthy controls. This lack of some cases, of working in the medical field in the differences in impact can be explained in terms of al- COVID-19 context (Menon et al., 2020) and, more ready being familiar with preventive measures and specifically, to their fear of infecting their child, who having developed more coping strategies as part of they perceive as potentially more vulnerable than the their adaptation to chronic illness. For instance, the general population (Cousino et al., 2020, Zhao et al., transplantation process involves important elements 2020). of stress, but at the same time, these families may be The impact of COVID-19 on all families in both more accustomed to dealing with uncertainty, result- groups has been mostly negative (Orgiles et al., 2020), ing in increased adaptability and more coping resour- with an increase in the feelings of uncertainty, anxiety, ces (Lupi et al., 2020). Moreover, pediatric transplant and fear, and a worsening of health habits and rou- teams have provided specific support and advice to tines. Not disregarding some minor but positive effects families during COVID-19, which could have miti- from the pandemic (Gambin et al., 2020) and in line gated the impact of the pandemic on SOT recipients’ with the psychosocial opportunities pointed out by families. Serlachius et al. (2020) regarding youth with chronic Most families of pediatric transplant recipients health conditions, most families in both groups reported that, as the entire population was required to reported that the pandemic has allowed them to spend go into lockdown and to follow specific prevention and enjoy more time together and feel more united measures (use of masks, hand hygiene, social dis- and cohesive as a family during the lockdown. A study tance. . .) during the pandemic, they felt more pro- by Cousino et al. (2020) found a significant psycho- tected than usual. Likewise, the common use of logical impact of COVID-19 in all family members of prevention measures by the population, which are ev- pediatric SOT recipients. In our study, we found simi- eryday routine measures for patients who have re- lar results but, although a larger psychological impact ceived a SOT, made them feel more understood and was expected in the SOT group, no differences were decreased the perception of stigmatization toward found between the groups. Previously, Zhao et al. their child. Occasionally, following emergencies such (2020) reported higher levels of anxiety and depres- as the COVID-19 pandemic, people who have shared sion in caregivers of SOT recipients compared to the the experience, feel a greater sense of belonging and general population. Our results probably differ community support (Schellekens & van der Lee, 8 Forner-Puntonet et al. Table IV. Themes, definitions and example quotes extracted from the qualitative analysis. Themes Definition Example quotes Shared themes Family cohesion Spending more time together as a family, sharing ac- “We were able to spend more time at home and en- tivities, dedicating more time to children and joy her [their daughter], which is something we achieving a greater sense of unity. were not able to do before”.—Mother of a 10- year-old female, SOT group. “Better relationships between our children, more time to help them do homework and becoming aware of their difficulties”.—Mother of a 12-year- old male, control group. Conciliation difficulties Difficulties adapting to spending all the time to- “On numerous occasions, it was really overwhelm- gether in the same place and reconciling work, ing, the fact of having to work constantly together kids’ schoolwork and household chores. with the children’s classes and homework plus the household chores, everything was so chaotic”— Mother of a 16-year-old male, control group. “Difficulties caring for two little kids, trying to teach them as best as I could what they were doing in school and also working 100% from home”.— Mother of a 6-year-old male, control group. Social impact Lack of in-person contact and sense of isolation “They [the children] lost every close relationship from usual social and familiar networks, and the with their friends or teachers”.—Mother of a 7- associated worries. year-old male, control group. “The loss of contact with other children was the worst part, she [their daughter] has compensated it with more time on the tablet”.—Mother of a 10-year-old female, control group. “The main problem was the impossibility to travel to our hometown to visit our other daughter”.— Father of a 5-year-old male, SOT group. Psychological impact Worsening in the psychological well-being of any “More apathy and nervousness”.—Mother of an 8- family members. year-old male, control group. “We felt really tense and apprehensive at the begin- ning, we had some really difficult days with some anxiety crisis”.—Mother of 11-year-old male, SOT group. “The whole family had a very bad time, all of us ex- perienced anxiety and a lot of depression”.— Mother of a 12-year-old female, SOT group. Uncertainty Fear or worries about the future in a general or spe- “Fear for the future, my husband may lose his cific way (financial, work-related, academic or job”.—Mother of a 17-year-old female, control health concerns among others). group. “Without doubt the most difficult part is the uncer- tainty of what is going to happen over the next months”.—Mother of a 17-year-old male, SOT group. Fear of infection The specific fear that a member of the family might “The fear of the virus, of death, of going out and be- become infected. coming infected”.—Mother of a 6-year-old male, control group. “Facing what is going to happen and knowing that we are all exposed to the infection is the worse part”.—Mother of a 17-year-old female, SOT group. Habits and activities Change, reduction or increase of habits and activi- “Less outdoor activities and less exercise”.—Mother ties as a response to the pandemic and its of a 14-year-old female, SOT group. restrictions. “The youngest one has developed an extreme attach- ment to technology devices”.—Mother of a 4- year-old male, control group. “Our routines were absolutely out of control”.— Mother of a 15-year-old male, control group. COVID-19 and Families of Pediatric SOT 9 Table . (continued) Themes Definition Example quotes Specific themes Less stigmatization Decreased sense of feeling different or having to take “We experienced some relief when we saw that hav- different actions from others in relation to the ing to protect us from the virus or wearing a mask transplant process and associated aspects. was not only about us”.—Mother of a 13-year-old male, SOT group. “The massive use of masks help transplanted people not to feel bad about wearing one, since they usu- ally wear one”—Mother of an 8-year-old male, SOT group. Prevention Measures Being already used to practicing prevention meas- “For my daughter it was not that hard since we were ures that are similar to those imposed during the used to being locked at home”.—Mother of an 8- pandemic and eased the adaptation to the pan- year-old female, SOT group. demic and its restrictions. “We managed the lockdown itself quite well because we have already been through it on two occasions. We built some routines and used our imagination to overcome boredom”.—Mother of a 10-year- old male, SOT group. Perception of Perceived improvements in their children’s health “Our daughter has not contracted any viruses, some- child with status that are directly linked to the pandemic and thing that had never happened since her trans- SOT health its restrictions. plant, and this improved her health status a improvement/safeness lot”.—Mother of a 10-year-old female, SOT group. “For our transplanted child it was better because he started gaining weight and we believe it’s because we started eating all meals at home. He has gained as much weight in three months as he had over the last four years”.—Father of an 11-year-old male, SOT group. “The hygiene measures for the society are really ben- eficial for transplanted people”.—Mother of an 8- year-old male, SOT group. Specific fear of infection Represents an extra fear of infecting the trans- “We suffered because of the fear of becoming planted children together with an explicit concern infected and that our transplanted child could about their perceived greater vulnerability. have severe complications”.—Mother of an 11- year-old male, SOT group. “My husband is on sick leave due to psychological issues because of how COVID-19 might affect our daughter”.—Mother of an 11-year-old male, SOT group. 2020). The generalized use of prevention measures, as overlooked in the context of the pandemic but it well as the fact of feeling more understood by society would probably be beneficial to introduce it in the as a whole, could have produced a greater sense of be- therapeutic interventions with these families. Also, a longing, which may have been a stress buffer for fami- promising strategy to implement with SOT families lies of transplant recipients in the current healthcare could be to reinforce their ability to be positive role crisis. models for other families who are going through a At a therapeutic level and with the aim of support- SOT process (e.g., expert patient programs) as well as ing the families of pediatric patients throughout the for the general population in times of uncertainty current crisis, it is important to develop remote inter- (e.g., awareness campaigns). These families may be ventions (Fong & Iarocci, 2020), in order to meet able to make important contributions when it comes these families’ needs while reducing the risk of expo- to how to manage and adapt to uncertainty, especially sure to COVID-19, as well as to work on strategies to in a health crisis like the current one. reduce the psychological impact both in transplant While the current study is an important first step in recipients and families in the general population. It understanding the impact of the pandemic on families seems that, for the families of pediatric SOT recipi- of SOT pediatric recipients, there were some limita- ents, the perception of stigmatization and, therefore, tions. The sample size was limited by the previously the associated beliefs have a substantial impact on established recruitment time, and response rates could their experience of the disease. This aspect has been have been improved by using more up-to-date 10 Forner-Puntonet et al. communication channels, reminders (Zhao et al., the use of preventive measures by the entire popula- 2020) or incentives. Studies with SOT recipients tend tion and from the fact that they and their children to have similar samples to those in our study due to have felt more understood, which has diminished feel- the specificity of the studied population (Cousino, ings and perceptions of stigmatization associated with et al., 2017). To contextualize the sample, the current pediatric transplantation. number of SOT recipients under the age of 18 in our hospital is 268, and the incidence of pediatric SOT Acknowledgments last year was 54 (OCATT, 2020). The sample recruited in our study correctly represents the higher The authors would like to thank the patient and family asso- ciations ANiNATH, En tus Zapatos, and Hipofam, whose prevalence of some types of transplants compared to support and collaboration made this study possible. others in our center. Regarding recruitment, we be- lieve that the acquaintance control method was useful in the pandemic situation, although the control group Funding may have been more familiar with prevention strate- No funding source to disclose. gies than the general public because they were acquaintances of the SOT families. Also, some socio- Conflicts of interest: demographic information about the sample (ethnicity, marital status, employment status, or education level J.A.R.Q was on the speakers’ bureau and/or acted as consul- of the child) was not registered. The instrument used tant for Eli-Lilly, Janssen-Cilag, Novartis, Shire, Takeda, was created ad hoc by the specialized Center for Bial, Shionogui, Lundbeck, Almirall, Braingaze, Sincrolab, Medice and Rubi o, Raffo in the last 5 years. He also received Pediatric Traumatic Stress at the outbreak of the pan- travel awards (air tickets þ hotel) for taking part in psychiat- demic because no other similar questionnaires were ric meetings from Janssen-Cilag, Rubi o, Shire, Takeda, available. Additionally, it should be noted that the Shionogui, Bial, Medice and Eli- Lilly. The Department of study did not include additional validated measures to Psychiatry chaired by him received unrestricted educational evaluate quality of life, family functioning or coping and research support from the following companies in the strategies that could have provided a broader picture last 5 years: Eli-Lilly, Lundbeck, Janssen-Cilag, Actelion, of the topic. Shire, Ferrer, Oryzon, Roche, Psious, and Rubi o. For future lines of research, we would recommend The rest of the authors have no conflicts of interest to including other psychological instruments, for exam- declare. ple, to assess depressive or anxious symptoms or cop- ing strategies of caregivers, which could provide a References broader view of the impact and resources of families Annunziato, R. A., Jerson, B., Seidel, J., & Glenwick, D. S. of SOT recipients. In addition, the reported results re- (2012). The psychosocial challenges of solid organ trans- flect a precise moment in the pandemic; results may plant recipients during childhood. Pediatric change over time as we get more knowledge about Transplantation, 16, 803–811. https://doi.org/10.1111/j. COVID-19 (Menon et al., 2020) or as new scenarios 1399-3046.2012.01749.x emerge (Downes et al., 2020). Results could also be Braun, V., & Clarke, V. (2006). Using thematic analysis in expected to differ between countries or regions psychology. Qualitative Research in Psychology, 3, (Cousino et al., 2020), possibly due to differences in 77–101. the mitigation measures taken, but more studies are Brooks, S. K., Webster, R. K., Smith, L. E., Woodland, L., Wessely, S., Greenberg, N., & Rubin, G. J. (2020). The needed. A next step for this line of research would be psychological impact of quarantine and how to reduce it: to conduct a follow-up evaluation on the impact, func- rapid review of the evidence. The Lancet, 395, 912–920. tioning, and coping strategies used by families of SOT https://doi.org/10.1016/S0140-6736(20)30460-8 recipients in the face of more sustained pandemic- Brosig, C., Pai, A., Fairey, E., Krempien, J., McBride, M., & related stress. In general, further longitudinal research Lefkowitz, D. S. (2014). Child and family adjustment fol- on the impact of the COVID-19 pandemic on families lowing pediatric solid organ transplantation: factors to of chronically ill children is needed. consider during the early years post-transplant. Pediatric In conclusion, while coping with the pandemic and Transplantation, 18, 559–567. https://doi.org/10.1111/ its effects has been a huge challenge for the entire pop- petr.12286 ulation, families with SOT patients were observed to Center for Pediatric Traumatic Stress (2020). The COVID- 19 Exposure and Family Impact Survey (CEFIS). Center be able to protect themselves more from the virus for Pediatric Traumatic Stress, Nemours Children’s Health probably due to their prior knowledge about, and System. Retrieved September 15, 2020 from https://bit.ly/ practice of, the safety measures and to their increased COVIDhealthcarecoping sense of vulnerability and precaution. Also, although Centro de Coordinaci on de Alertas y Emergencias Sanitarias the emotional impact has generally been negative, the (2020). Actualizaci on n 194. Enfermedad por el coronavi- families of transplant recipients have benefited from rus (COVID-19). August 27, 2020. Retrieved May 4, COVID-19 and Families of Pediatric SOT 11 2021 from https://www.mscbs.gob.es/profesionales/ Practice, and Policy, 12, S79–81. https://doi.org/10.1037/ saludPublica/ccayes/alertasActual/nCov/documentos/ tra0000672 Actualizacion_194_COVID-19.pdf Fredericks, E. M., Zelikovsky, N., Aujoulat, I., Hames, A., Ceylan, Z. (2020). Estimation of COVID-19 prevalence in & Wray, J. (2014). Post-transplant adjustment—the later Italy, Spain, and France. The Science of the Total years. Pediatric Transplantation, 18, 675–688. https://doi. Environment, 729, 138817.https://doi.org/10.1016/j.sci- org/10.1111/petr.12366 totenv.2020.138817 Gambin, M., Wozniak-Prus, M., Sekowski, M., Cudo, A., Cousino, M. K., Pasquali, S. K., Romano, J. C., Norris, M. Pisula, E., Kiepura, E., . . . Kmita, G. (2020). Factors re- D., Yu, S., Reichle, G., Lowery, R., Viers, S., & lated to positive experiences in parent-child relationship Schumacher, K. R. (2020). Impact of the COVID-19 pan- during the COVID-19 lockdown. The role of empathy, demic on CHD care and emotional wellbeing. Cardiology emotion regulation, parenting self-efficacy and social sup- in the Young, 1–7. Advance online publication. https://doi. port. PsyArXiv, https://doi.org/10.31234/OSF.IO/ org/10.1017/S1047951120004758 YHTQA Cousino, M. K., Rea, K. E., Schumacher, K. R., Magee, J. C., Goss, M. B., Galv an, N. T. N., Ruan, W., Munoz, F. M., & Fredericks, E. M. (2017). A systematic review of parent Brewer, E. D., O’Mahony, C. A., Melicoff-Portillo, E., and family functioning in pediatric solid organ transplant Dreyer, W. J., Miloh, T. A., Cigarroa, F. G., Ranch, D., populations. Pediatric Transplantation, 21(3), e12900. Yoeli, D., Adams, M. A., Koohmaraie, S., Harter, D. M., https://doi.org/10.1111/petr.12900 Rana, A., Cotton, R. T., Carter, B., Patel, S., . . . Goss, J. A. Cucinotta, D., & Vanelli, M. (2020). WHO declares (2021). The pediatric solid organ transplant experience COVID-19 a pandemic. Acta Bio-Medica: Atenei with COVID-19: an initial multi-center, multi-organ case Parmensis, 91(1), 157–160. https://doi.org/10.23750/abm. series. Pediatric Transplantation, 25, e13868.https://doi. v91i1.9397 org/10.1111/petr.13868 D’Antiga, L. (2020). Coronaviruses and immunosuppressed Götzinger, F., Santiago-Garcıa, B., Noguera-Juli an, A., patients: the facts during the third epidemic. Liver Lanaspa, M., Lancella, L., Cal o Carducci, F. I., Transplantation, 26, 832–834. https://doi.org/10.1002/lt. Gabrovska, N., Velizarova, S., Prunk, P., Osterman, V., 25756 Krivec, U., Lo Vecchio, A., Shingadia, D., Soriano- Downes, K. J., Danziger-Isakov, L. A., Cousino, M. K., Arandes, A., Melendo, S., Lanari, M., Pierantoni, L., Green, M., Michaels, M. G., Muller, W. J., Orscheln, R. Wagner, N., L’Huillier, A. G., . . . Riordan, A. (2020). C., Sharma, T. S., Statler, V. A., Wattier, R. L., & Ardura, COVID-19 in children and adolescents in Europe: a multi- M. I. (2020). Return to school for pediatric solid organ national, multicentre cohort study. The Lancet Child & transplant recipients in the United States during the coro- Adolescent Health, 4, 653–661. https://doi.org/10.1016/ navirus disease 2019 pandemic: expert opinion on key S2352-4642(20)30177-2 considerations and best practices. Journal of the Pediatric Hage, R., Steinack, C., Benden, C., & Schuurmans, M. M. Infectious Diseases Society, 9, 551–563. https://doi.org/ (2020). COVID-19 in patients with solid organ transplan- 10.1093/jpids/piaa095 tation: a systematic review. Transplantology, 1(1), 1–15. Eibensteiner, F., Ritschl, V., Ariceta, G., Jankauskiene, A., https://doi.org/10.3390/transplantology1010001 Klaus, G., Paglialonga, F., Edefonti, A., Ranchin, B., Inspector, Y., Kutz, I., & David, D. (2004). Another person’s Schmitt, C. P., Shroff, R., Stefanidis, C. J., Walle, J., Vande heart: magical and rational thinking in the psychological Verrina, E., Vondrak, K., Zurowska, A., Stamm, T., & adaptation to heart transplantation. The Israel Journal of Aufricht, C.; European Pediatric Dialysis Working Group Psychiatry and Related Sciences, 41, 161. (2020). Rapid response in the COVID-19 pandemic: a LaRosa, C., Jorge Baluarte, H., & Meyers, K. E. C. (2011). Delphi study from the European Pediatric Dialysis Outcomes in pediatric solid-organ transplantation. Working Group. Pediatric Nephrology (Berlin, Germany), Pediatric Transplantation, 15, 128–141. https://doi.org/ 35, 1669–1678. https://doi.org/10.1007/s00467-020- 10.1111/j.1399-3046.2010.01434.x 04584-6 Ludvigsson, J. F. (2020). Systematic review of COVID-19 in Fegert, J. M., Vitiello, B., Plener, P. L., & Clemens, V. children shows milder cases and a better prognosis than (2020). Challenges and burden of the Coronavirus 2019 adults. Acta Paediatrica, 109, 1088–1095. https://doi.org/ (COVID-19) pandemic for child and adolescent mental 10.1111/apa.15270 health: a narrative review to highlight clinical and research Lupi, D., Binda, B., Montali, F., Natili, A., Lancione, L., needs in the acute phase and the long return to normality. Chiappori, D., Parzanese, I., Maccarone, D., & Pisani, F. Child and Adolescent Psychiatry and Mental Health, (2020). Transplant patients’ isolation and social distancing 14(1), 20. https://doi.org/10.1186/s13034-020-00329-3 because of COVID-19: analysis of the resilient capacities Fong, C. V., & Iarocci, G. (2020). Child and family out- of the transplant in the management of the coronavirus comes following pandemics: a systematic review and rec- emergency. Transplantation Proceedings, 52, 2626–2630. ommendations on COVID-19 policies. Journal of https://doi.org/10.1016/j.transproceed.2020.05.031 Pediatric Psychology, 45, 1124–1143. https://doi.org/10. Massey, E. K., & Forsberg, A. (2020). Dealing with uncer- 1093/jpepsy/jsaa092 tainty after transplantation in times of COVID-19. Fontanesi, L., Marchetti, D., Mazza, C., Di Giandomenico, Transplant International, 33, 1337–1338. https://doi.org/ S. D., Roma, P., & Verrocchio, M. C. (2020). The effect of 10.1111/tri.13709 the COVID-19 lockdown on parents: a call to adopt urgent Menon, J., Shanmugam, N., Patel, K., Hakeem, A., Reddy, measures. Psychological Trauma: Theory, Research, M. S., & Rela, M. (2020). Awareness and concerns about 12 Forner-Puntonet et al. novel coronavirus disease 2019 (COVID-19) among sanitaria ocasionada por el COVID-19. Boletın Oficial parents of pediatric liver transplant recipients. Pediatric Del Estado, 67, de 14 de marzo de 2020, 25390–25400. Transplantation, 24, e13805.https://doi.org/10.1111/petr. https://www.boe.es/boe/dias/2020/03/14/pdfs/BOE-A- 13805 2020-3692.pdf Minotti, C., Tirelli, F., Barbieri, E., Giaquinto, C., & Dona, Schellekens, M. P. J., & van der Lee, M. L. (2020). D. (2020). How is immunosuppressive status affecting Loneliness and belonging: exploring experiences with the children and adults in SARS-CoV-2 infection? A system- COVID-19 pandemic in psycho-oncology. Psycho-oncol- atic review. Journal of Infection, 81(1), e61–e66. https:// ogy, 29, 1399–1401. https://doi.org/10.1002/pon.5459 doi.org/10.1016/j.jinf.2020.04.026 Serlachius, A., Badawy, S. M., & Thabrew, H. (2020). Organitzaci o Catalana de Trasplantaments (OCATT) Psychosocial challenges and opportunities for youth with (2020). Resultats d’activitat de donacio i trasplantament a chronic health conditions during the COVID-19 pan- Catalunya. Balanç 2020. OCATT website. http://trasplan- demic. JMIR Pediatrics and Parenting, 3, e23057.https:// taments.gencat.cat/web/.content/minisite/trasplantament/ doi.org/10.2196/23057 registres_activitat/registre_de_donacio_i_trasplantament/ Stiles-Shields, C., Plevinsky, J. M., Psihogios, A. M., & arxius/OCATT-Balanc-DTx-2020-def.pdf. Retrieved 4 Holmbeck, G. N. (2020). Considerations and future direc- May 2021. tions for conducting clinical research with pediatric popu- Organizaci on Nacional de Trasplantes (ONT); Ministerio de lations during the COVID-19 pandemic. Journal of Sanidad (2020). La Organizaci on Nacional de Trasplantes Pediatric Psychology, 45, 720–549. https://doi.org/10. presenta su balance de actividad en 2020. http://www.ont. 1093/jpepsy/jsaa017 es/Documents/Nota%20de%20Prensa%20BALANCE% Stuber, M. L., & Shemesh, E. (2006). Post-traumatic stress 20ONT%202020.pdf. Retrieved 4 May 2021. response to life-threatening illnesses in children and their Orgiles, M., Morales, A., Delvecchio, E., Mazzeschi, C., & parents. Child and Adolescent Psychiatric Clinics of North Espada, J. P. (2020). Immediate psychological effects of America, 15, 597–609. https://doi.org/10.1016/j.chc. the COVID-19 quarantine in youth from Italy and Spain. 2006.02.006 Frontiers in Psychology, 11, 579038.https://doi.org/10. The Lancet Public Health. (2020). COVID-19 puts societies 3389/fpsyg.2020.579038 to the test. The Lancet Public Health 5, e235.https://doi. Perez-Martinez, A., Guerra-Garcıa, P., Melgosa, M., Frauca, org/10.1016/S2468-2667(20)30097-9 E., Fernandez-Camblor, C., Remesal, A., & Calvo, C. Wu, M., Xu, W., Yao, Y., Zhang, L., Guo, L., Fan, J., & (2021). Clinical outcome of SARS-CoV-2 infection in immunosuppressed children in Spain. European Journal of Chen, J. (2020). Mental health status of students’ parents Pediatrics, 180, 967–971. https://doi.org/10.1007/s00431- during COVID-19 pandemic and its influence factors. 020-03793-3 General Psychiatry, 33, e100250. https://doi.org/10.1136/ Plevinsky, J. M., Young, M. A., Carmody, J. K., Durkin, L. gpsych-2020-100250 K., Gamwell, K. L., Klages, K. L., Ghosh, S., & Hommel, Zgoura, P., Seibert, F. S., Waldecker, C., Doevelaar, A., K. A. (2020). The impact of COVID-19 on pediatric ad- Bauer, F., Rohn, B., Schenker, P., Wunsch, A., Viebahn, herence and self-management. Journal of Pediatric R., Babel, N., & Westhoff, T. H. (2020). Psychological Psychology, 45, 977–982. https://doi.org/10.1093/jpepsy/ responses to the Covid-19 pandemic in renal transplant jsaa079 recipients. Transplantation Proceedings, 52, 2671–2675. Raja, M. A., Mendoza, M. A., Villavicencio, A., Anjan, S., https://doi.org/10.1016/j.transproceed.2020.08.043 Reynolds, J. M., Kittipibul, V., Fernandez, A., Guerra, G., Zhao, R., Zhou, Q., Wang, X.-W., Liu, C.-H., Wang, M., Camargo, J. F., Simkins, J., Morris, M. I., Abbo, L. A., & Yang, Q., Zhai, Y.-H., Zhu, D.-Q., Chen, J., Fang, X.-Y., Natori, Y. (2021). COVID-19 in solid organ transplant Tang, X.-S., Zhang, H., Shen, Q., & Xu, H. (2020). recipients: A systematic review and meta-analysis of cur- COVID-19 outbreak and management approach for fami- rent literature. Transplantation Reviews, 35(1), lies with children on long-term kidney replacement ther- 100588.https://doi.org/10.1016/j.trre.2020.100588 apy. Clinical Journal of the American Society of Real Decreto 463/2020, de 14 de marzo, por el que se declara Nephrology, 15, 1259–1266. https://doi.org/10.2215/ el estado de alarma para la gestion de la situaci on de crisis CJN.03630320