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Salih Rakap; Meryem Vural-Batik; Sinan Kalkan (et al.)
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.
M. A. Linden; T. Forbes; M. Brown (et al.)
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.
Sally S. Cohen; Valerie Boebel Toly; Stacee M. Lerret (et al.)
Jessica M. Valenzuela; Karen Dimentstein; Shanique Yee (et al.)
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.
Anna Zanin; Anna Santini; Enrico Furlan (et al.)
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.
Julia M. Gumy; Allison Silverstein; Erica C. Kaye (et al.)
Azza Mohamed Fathy Attia; Hala Samir Ahmed El-husseiny; Rehab Abd El Aziz El Sayed Abd El Aziz
Ashley N. Murphy; Ellie Bruckner; Linzy M. Pinkerton (et al.)
Kate Pincock; Nicola Jonesa; Kifah Baniodeh (et al.)
Cara Gallegos; Michael D. Aldridge; Kelley Connor (et al.)
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.
Kelly P. Arbour-Nicitopoulos; Maeghan E. James; Sarah A. Moore (et al.)
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.
Kerstin Monika Tönsing; Shakila Dada; Kirsty Bastable (et al.)
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.
Irene L. B. Oude Lansink; P. C. Carolien van Stam; Eline C. W. M. Schafrat (et al.)
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.
Pınar Bekar; Münevver Erkul; Emine Efe
This study aimed to investigate the coronavirus anxiety and caregiving burden of parents of children with cancer during the COVID-19 outbreak. This descriptive and cross-sectional study, including 136 parents of children with cancer, was administered through an online survey at a university hospital from 1 to 31 January 2021. Participants completed a questionnaire form, the Zarit Caregiver Burden Scale and the Coronavirus Anxiety Scale.
Revathi Raja; Ramya Uppuluri; Badira Parambil (et al.)
The clinical outcomes of COVID-19 infection in children with cancer have been variable worldwide. Therefore, we aimed to collect data from all regions in India through a national collaborative study and identify factors that cause mortality directly related to COVID-19 infection. Data was collected prospectively on children across India on cancer therapy and diagnosed with COVID-19 infections from 47 centers from April 2020 to October 2021. Information was recorded on the demographics, the number of children that required intervention, and the outcome of the infection. In addition, we analyzed the impact of the delta variant in 2021.
UNICEF Innocenti's Children and COVID-19 Library is a database collecting research from around the world on COVID-19 and its impacts on children and adolescents.
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