Families with transplanted children feel more understood due to the widespread use of prevention measures, such as masks

The COVID-19 pandemic, the lockdown and the prevention measures that have been adopted in the last year had a very important impact on everybody’s day-to-day life. From the beginning, one of the objectives of the Psychiatry Service of the Vall d'Hebron University Hospital and the research group in Psychiatry, Mental Health and Addictions of the Vall d'Hebron Research Institute (VHIR) was to investigate how the families of pediatric patients with a chronic health condition, such as the families of transplanted children and adolescents, were living the pandemic and the restrictions. The results of this study, published in the Journal of Pediatric Psychology, show that these family groups were more afraid of infecting their children and this made them protect themselves more and better. On the other hand, they explain having felt more understood and less stigmatized due to the widespread use of prevention measures, such as masks, which transplanted children already used before the pandemic.

To carry out the research, between July and August 2020, 96 families answered a questionnaire about their exposure to COVID-19 and the impact that the pandemic had and was having on them. Of these, 48 were families of children and adolescents between 0 and 17 years’ old who had undergone a solid organ transplant process (liver, kidney, heart or lung) and 48 with minors without chronic disease. The work was led by the Psychiatry Service of the Vall d'Hebron University Hospital and the research group on Psychiatry, Mental Health and Addictions at the VHIR with the participation of the Pediatric Hepatology and Liver Transplantation Unit, the Pediatric Nephrology and Cardiology Services and the Pediatric Pulmonology Unit. The study was possible thanks to the collaboration of the patient and family associations ANiNATH, En tus Zapatos and Hipofam.

Among the results of the research, it stands out that, although in general the experiences of both groups were similar (they spent more time with the family, had difficulty reconciling work and personal life, suffered from fear and anxiety...), in the families of patients, other specific aspects were observed. For example, they reported feeling more understood. “Compared to before the pandemic, these families have now a lower perception of stigmatization and a greater sense of protection due to the use by the entire population of prevention measures to which they are accustomed, such as isolation, the use of mask or strict hygiene”, explains Mireia Forner, associate of Clinical Psychology of the Psychiatry Service at Vall d’Hebron Hospital and researcher of the Psychiatry, Mental Health and Adictions group at VHIR.

Moreover, the caution and the greater perception of vulnerability of these families has meant that they have tried to expose themselves less to COVID-19. These families were more afraid of the possibility of infecting their son or daughter.

However, the study found that the emotional impact of the pandemic on the family system of transplant patients was similar to that of families without transplanted children. Overall, both groups of families had experienced increased anxiety levels, worsening mood, sleep disturbances, and changes in health habits. On the other hand, from a positive point of view, the families explained that the relationship between the different members had improved by spending more time together.

“Little information was available about the emotional impact of the pandemic on the families of solid organ transplant patients. From the Psychiatry Service we consider it important to know what the experience of these families was on an emotional level in order to assess whether they required specific psychological interventions”, says Mireia Forner.

The study, which is published now, won the first prize for the best oral communication at the III Symposium on Psychosomatics and Psychiatry held in October 2020. The results were presented by Eudald Castell, resident of Clinical Psychology of the Department of Psychiatry of the Vall d'Hebron University Hospital. “It is key to be able to get closer and better understand the reality that families with transplanted children and adolescents live. This award is a way of certifying and recognizing the importance of studying and better understanding families that have a son or daughter with a chronic health condition”, says Eudald Castell.