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Children and COVID-19 Research Library

UNICEF Innocenti's curated library of COVID-19 + Children research

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Impacts of health care service changes implemented due to COVID-19 on children and young people with long-term disability: a mapping review

AUTHOR(S)
Hannah Merrick; Helen Driver; Chloe Main (et al.)

Published: January 2023   Journal: Developmental Medicine & Child Neurology

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.

Access to healthcare for children and adolescents with a chronic health condition during the COVID-19 pandemic: first results from the KICK-COVID study in Germany

AUTHOR(S)
Julia M. Göldel; Clemens Kamrath; Kirsten Minden (et al.)

Published: December 2022   Journal: Children
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.
Cite this research | Open access | Vol.: 10 | Issue: 1 | No. of pages: 11 | Language: English | Topics: Health | Tags: care of disabled children, COVID-19 response, diabetes, disabled children, health care, lockdown, obesity, social distance | Countries: Germany
The hidden (overlooked) impact of living through a pandemic: how parents of children with disabilities fared during COVID-19?

AUTHOR(S)
Salih Rakap; Meryem Vural-Batik; Sinan Kalkan (et al.)

Published: November 2022   Journal: Frontiers in Education

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.

Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: perspectives from UK and Irish Non-Governmental Organisations

AUTHOR(S)
M. A. Linden; T. Forbes; M. Brown (et al.)

Published: November 2022   Journal: BMC Public Health volume

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.

The impact of COVID-19 on systems of care for children and youth with special health care needs

AUTHOR(S)
Sally S. Cohen; Valerie Boebel Toly; Stacee M. Lerret (et al.)

Published: September 2022   Journal: Journal of Pediatric Health Care
This manuscript describes the challenges and opportunities that the COVID-19 pandemic presented for providing and coordinating care for children and youth with special health care needs (CYSHCN) who rely on a diverse array of systems to promote their health, education, and well-being. Peer-reviewed published literature and reports from the national government and nonprofit organizations that advocate for CYSHCN were examined, particularly concerning systems that impacted CYSHCN during COVID-19.
Psychosocial impact of the COVID-19 pandemic in racially/ethnically diverse youth with diabetes

AUTHOR(S)
Jessica M. Valenzuela; Karen Dimentstein; Shanique Yee (et al.)

Published: September 2022   Journal: Journal of Pediatric Psychology

This study examined caregiver perceived impact of the Coronavirus Disease 2019 (COVID-19) pandemic on a diverse sample of U.S. youth with diabetes and their families. Caregivers of youth with diabetes completed an electronic survey in English or Spanish at two sites. Participants provided demographic and disease characteristics and completed the COVID-19 Exposure and Family Impact Scales (CEFIS). Glycemic health was assessed via Hemoglobin A1c (HbA1c) from medical chart review. Analysis of variance and analyses of covariance were utilized to examine racial/ethnic differences in glycemic health and in COVID-19 Exposure, Impact, and Distress scales. Hierarchical linear regression was conducted to predict HbA1c. Thematic analysis was conducted on open-ended responses regarding the effects of COVID-19 on youth and families’ overall and diabetes-related well-being.

Taking the rights of children with complex conditions seriously: new ethics challenges arisen during the COVID-19 pandemic

AUTHOR(S)
Anna Zanin; Anna Santini; Enrico Furlan (et al.)

Published: September 2022   Journal: Frontiers in Pediatrics

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.

Global caregiver concerns of SARS-CoV-2 vaccination in children with cancer: a cross-sectional mixed-methods study.

AUTHOR(S)
Julia M. Gumy; Allison Silverstein; Erica C. Kaye (et al.)

Published: July 2022   Journal: Pediatric Hematology and Oncology
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.
Mothers' health practices regarding care of their epileptic children during restriction of COVID-19 outbreak

AUTHOR(S)
Azza Mohamed Fathy Attia; Hala Samir Ahmed El-husseiny; Rehab Abd El Aziz El Sayed Abd El Aziz

Published: July 2022   Journal: International Egyptian Journal of Nursing Sciences and Research
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.
Cite this research | Open access | Vol.: 3 | Issue: 1 | No. of pages: 337-356 | Language: English | Topics: Health | Tags: care of disabled children, COVID-19 response, health services, lockdown, maternal care, social distance | Countries: Egypt
Parent satisfaction with the parent-provider partnership and therapy service delivery for children with disabilities during COVID-19: associations with sociodemographic variables

AUTHOR(S)
Ashley N. Murphy; Ellie Bruckner; Linzy M. Pinkerton (et al.)

Published: June 2022   Journal: Families, Systems, & Health
 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.
COVID-19 and social policy in contexts of existing inequality: experiences of youth with disabilities in Ethiopia and Jordan

AUTHOR(S)
Kate Pincock; Nicola Jonesa; Kifah Baniodeh (et al.)

Published: June 2022   Journal: Disability & Society
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.
Parenting a child with a chronic illness during a pandemic

AUTHOR(S)
Cara Gallegos; Michael D. Aldridge; Kelley Connor (et al.)

Published: May 2022   Journal: Journal of Pediatric Nursing

Nearly 20% of children in the United States experience one or more chronic health conditions. Parents of a child with a special healthcare need (CSHCN) experience increased stress caring for a child with chronic illness. The purpose of this descriptive study is to describe stress in parents of a child with chronic illness during the COVID-19 pandemic. Parents of CSHCN (n = 34) were asked to fill out the Pediatric Inventory for Parents (PIP) and answer two questions related to caring for their child during the COVID-19 pandemic.

Movement behaviours and health of children and youth with disabilities: impact of the 2020 COVID-19 pandemic

AUTHOR(S)
Kelly P. Arbour-Nicitopoulos; Maeghan E. James; Sarah A. Moore (et al.)

Published: May 2022   Journal: Paediatrics & Child Health

This study examined the acute and longer-term impacts of the COVID-19 pandemic on the movement behaviours and health of children and youth with disabilities (CYD) in Canada. Eighty-six parents of CYD completed an online survey twice (May 2020 and November 2020). Interviews were completed with seven families in March 2021.

Cite this research | Open access | Vol.: 27 | Issue: Supplement 1 | No. of pages: 66-71 | Language: English | Topics: Health | Tags: adolescent health, care of disabled children, child health, COVID-19 response, disabled children, lockdown, social distance | Countries: Canada
Health information and education needs for youth with complex communication needs during the Covid-19 pandemic: rehabilitation professionals’ perspectives

AUTHOR(S)
Kerstin Monika Tönsing; Shakila Dada; Kirsty Bastable (et al.)

Published: May 2022   Journal: Disability and Rehabilitation

The worldwide Covid-19 pandemic has highlighted inequities faced by persons with complex communication needs (CCN) in accessing health information and education. This study reports on the perspectives of South African rehabilitation professionals regarding access to health information and education for youth with CCN. Two asynchronous online written focus groups were conducted with 15 rehabilitation professionals. Participants’ contributions were thematically analysed.

‘This battle, between your gut feeling and your mind. Try to find the right balance’: Parental experiences of children with spinal muscular atrophy during COVID-19 pandemic

AUTHOR(S)
Irene L. B. Oude Lansink; P. C. Carolien van Stam; Eline C. W. M. Schafrat (et al.)

Published: April 2022   Journal: Child: Care, Health and Development

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.

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