Children and COVID-19 Research Library

This research aimed to identify the research on childhood disability service adaptations and their impact on children and young people with long-term disability during the COVID-19 pandemic. A mapping review was undertaken. The World Health Organization Global COVID-19 database was searched using the search terms ‘children’, ‘chronic/disabling conditions’, and ‘services/therapies’. Eligible papers reported service changes for children (0–19 years) with long-term disability in any geographical or clinical setting between 1st January 2020 and 26th January 2022. Papers were charted across the effective practice and organization of care taxonomy of health system interventions and were narratively synthesized; an interactive map was produced.

This study examines the access to healthcare for children and adolescents with three common chronic diseases (type-1 diabetes (T1D), obesity, or juvenile idiopathic arthritis (JIA)) within the 4th (Delta), 5th (Omicron), and beginning of the 6th (Omicron) wave (June 2021 until July 2022) of the COVID-19 pandemic in Germany in a cross-sectional study using three national patient registries. A paper-and-pencil questionnaire was given to parents of pediatric patients (<21 years) during the routine check-ups. The questionnaire contains self-constructed items assessing the frequency of healthcare appointments and cancellations, remote healthcare, and satisfaction with healthcare. In total, 905 parents participated in the T1D-sample, 175 in the obesity-sample, and 786 in the JIA-sample. In general, satisfaction with healthcare (scale: 0–10; 10 reflecting the highest satisfaction) was quite high (median values: T1D 10, JIA 10, obesity 8.5). The proportion of children and adolescents with canceled appointments was relatively small (T1D 14.1%, JIA 11.1%, obesity 20%), with a median of 1 missed appointment, respectively. Only a few parents (T1D 8.6%; obesity 13.1%; JIA 5%) reported obstacles regarding health services during the pandemic. To conclude, it seems that access to healthcare was largely preserved for children and adolescents with chronic health conditions during the COVID-19 pandemic in Germany.

The purpose of this study was to investigate the impact of the COVID-19 pandemic on the quality of life of families of children with disabilities and the mediating roles of perceived social support, perceived parental self-efficacy, psychological health, psychological resilience, and perceived family burden on this relationship. Children with disabilities and their families are among the most affected populations from the restrictions imposed to prevent the spread of COVID-19 virus, as the special education and rehabilitation services they had been receiving were interrupted.  A correlational survey design was used to collect data from 824 parents of children with disabilities in Turkey. Path analysis was used to examine the direct and indirect effects of COVID-19 on family quality of life.

Family carers of people with profound and multiple intellectual disabilities (PMID) experienced a reduction in healthcare services due to the COVID-19 pandemic. Many subsequently turned to Non-Governmental Organisations who worked to support families. However, little research has sought to capture the experiences of family carers or identify effective interventions which might support them. To address these concerns we explored the views of Non-Governmental sector workers across the UK and Ireland who supported families people with PMID during the COVID-19 pandemic. We also sought to explore their views on the characteristics of online support programmes for family carers. This study employed a qualitative design using focus groups with participants (n = 24) from five Non-Governmental Organisations across the UK and Ireland. A focus group guide included questions on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were held online, were audio recorded and transcribed verbatim. The resulting transcripts were pseudonymised and subjected to thematic analysis.

Children with complex care conditions (CCCs) and their families have always been a fragile population, at high risk of marginalisation and social exclusion, even prior to the outbreak of the COVID-19 pandemic. Few studies have explored in detail the impact of the pandemic on CCCs, and there are no shared guidelines on how to tackle the specific ethical dilemmas posed by the COVID-19 predicament. Both healthcare professionals and families improvised novel strategies to overcome the current crisis, but these tentative answers cannot be the solution in the long run. In this article, we set out to highlight some new ethics challenges regarding CCCs arisen during the COVID-19 pandemic, referring on the one hand to the United Nations Convention on the Rights of the Child (UNCRC)1 and on the other hand to the experience of a Paediatric Palliative Care Service of the Veneto Region (Italy), presenting and discussing three real-life cases.

The objective of this study was to understand global caregiver concerns about SARS-CoV-2 vaccination for children with cancer and to provide healthcare providers with guidance to support parental decision-making. A co-designed cross-sectional mixed-methods survey was distributed to primary caregivers of children with cancer globally between April and May 2021 via several media. Caregivers were asked to rate the importance of vaccine-related questions and the median scores were ranked. Principal Component Analysis was conducted to identify underlying dimensions of caregiver concerns by World Bank income groups. Content analysis of free-text responses was conducted and triangulated with the quantitative findings. 627 caregivers from 22 countries responded to the survey with 5.3% (n = 67) responses from low-and-middle-income countries (LMIC). 184 caregivers (29%) provided free-text responses. Side effects and vaccine safety were caregivers’ primary concerns in all countries. Questions related to logistics were of concern for caregivers in LMIC.

Currently, the COVID-19 is considered one of the most severe health problems in the world. One of the most important chronic diseases common among children that need treatment for a long time is epilepsy, whose provision of appropriate medical treatment at the time of Corona has become one of the most considerable difficulties facing society during the pandemic outbreak. The aim is to assess the health practices of the mothers regarding caring for their children with epilepsy during the COVID-19 outbreak. A descriptive design was utilized to perform the study. The Setting: The present study has performed the outpatient at the Psychological hospital, and Al-Naser Specialized Hospital for children in Port Said city, Egypt.

 The novel coronavirus disease 2019 (COVID-19) significantly disrupted therapy service delivery for children with disabilities and their families. Parents of children with disabilities have been particularly impacted as a large degree of responsibility has been placed on them to both manage and deliver therapies remotely. However, little is known regarding whether sociodemographic factors are associated with parents’ perceptions of therapy service delivery during COVID-19. This study explored the relationship between sociodemographic factors and parents’ satisfaction with therapies for children with disabilities during COVID-19. Two hundred seven parents of children with disabilities completed an online survey battery that included the Family-Provider Partnership Scale and sociodemographic characteristics and assessed their satisfaction with their child[ren]’s therapies during COVID-19.

This article explores the social policy implications of the COVID-19 pandemic for adolescents and young people with disabilities in Ethiopia and Jordan. The article draws on qualitative research interviews carried out in person between November and December 2019 and by phone between April and June 2020 with 65 young people with hearing, visual and physical impairments in urban settings in both countries, complemented by interviews with key informants in government and civil society organisations working with young people. Whilst in Jordan social policy on disability is more developed, and in Ethiopia, systems are still embryonic, the COVID-19 pandemic has increased the marginalisation of adolescents and young people with disabilities in both contexts as health, education and social protection systems have been slow to mobilise targeted support and address social exclusion. This article identifies social policy gaps in Ethiopia and Jordan that must be addressed in order to support young people with disabilities during crises.

Parents of children with spinal muscular atrophy (SMA) often struggle with the all-consuming nature of the demands of caring for a child with substantial physical needs. This paper aims to explore experiences, challenges and needs of parents of a child with SMA in a COVID-19 pandemic situation. Nineteen parents of 21 children (15 months to 13 years of age) with SMA types 1–3 participated in semi-structured interviews in June to July 2020. The interviews were analysed using inductive thematic analysis.