Mental Health of Siblings of Children with Rare Congenital Surgical Diseases during the COVID-19 Pandemic

Abstract

Introduction The COVID-19 pandemic has affected every aspect of our society, particularly vulnerable groups, such as families with children suffering from rare diseases. However, the psychosocial influences of COVID-19 on the healthy siblings of children with rare diseases have not been investigated yet. Thus, the study aimed to evaluate the mental health of healthy siblings of children with rare congenital surgical diseases during the COVID-19 pandemic. Material and methods Siblings of children with rare congenital surgical diseases were investigated cross-sectionally between April 2020 and April 2021. Data on mental health were collected using the parent-version of the Strengths and Difficulties Questionnaire (SDQ). Results Out of 104 families, 81 (77.88%) participated in the survey. Healthy siblings presented with comparable levels of emotional and behavioral difficulties compared with population norms before the COVID-19 pandemic. Compared with studies that surveyed child and adolescent mental health during the COVID-19 pandemic, parents of siblings in this study reported a significantly lower impairment rate. Psychosocial and disease-specific risk factors of the respective outcomes in healthy siblings were identified through regression analysis models. Conclusion In general, health-care professionals should be aware of the possibility of siblings' mental health being at risk. Therefore, screening for psychosocial deficits may be essential in preventing psychiatric disorders in this population, especially during pandemics. Trial registration ClinicalTrials.gov: NCT04382820 (registered April 8, 2020)

Health-Related Quality of Life and Mental Health of Children with Embryonal Abdominal Tumors

“…An exception is social aspects, in which our study population also differs significantly from the control group. A previous study has shown that contact with hospitals in childhood is fundamentally associated with a high level of stress for the entire family and leads to decreased HRQoL and mental health [38]. This could explain our results, considering that our control group was not fully healthy at the time of the survey but also received surgery.…”

Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19

“…The geographical distribution of data in the studied material showed a prevalence of research in continental Europe, with 61.1% of the total yield of studies coming from this region. Of these ten documents, five were from England [9,10,14,23,24], three were from Italy [5,7,11], two were from Germany [8,25], and one was from Norway [13]. After Europe, two articles were from North America [12,18], one was from Asia (Hong Kong) [26], one was from the Asia-Pacific region [17] (based on data from Australia, Hong Kong, India, Japan, China, Malaysia, New Zealand, the Philippines, Singapore, and Taiwan), one was from South America (Brazil) [6], and, finally, there was one that took a broad global perspective [19].…”

“…Regarding RDs, nine documents approached the theme in a broad, general way [6,8,[12][13][14]17,19,25,26], while the rest focused on one or two diseases or on a specific group of diseases per publication. The RDs mentioned in the articles were hereditary haemorrhagic telangiectasia (HTT) [5], lysosomal storage disorder (LSD) [7], Batten disease [18], interstitial cystitis/bladder pain syndrome (IC/BPS) [11], osteogenesis imperfecta [10], congenital surgical diseases [25], oesophageal atresia/tracheo-oesophageal fistula (OA/TOF) [9], rare neurogenetic conditions [24], and macrocytosis [23].…”

“…The publications addressed the relationship between COVID-19 and RDs from different perspectives, choosing to focus on patients, families/relatives/caregivers (FRCs), RD organisations, and intervention issues. In particular, seven documents considered the patient's perspective [6,7,10,12,13,23,26], five focused on FRCs [8,9,14,24,25], four assessed interventions [5,11,18,19], and one examined an RD organisational perspective [17].…”

“…RD patients often have healthy siblings, and, interestingly, Boettcher et al [25] found that the healthy siblings of RD children often do not receive the same level of attention from caregivers. The pandemic exacerbated this situation, potentially leading to further isolation and challenges.…”