Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
Abstract Background Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an under...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-10-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-023-01280-8 |
| _version_ | 1797647093683191808 |
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| author | Adam Rapoport David B. Nicholas Rosslynn T. Zulla |
| author_facet | Adam Rapoport David B. Nicholas Rosslynn T. Zulla |
| author_sort | Adam Rapoport |
| collection | DOAJ |
| description | Abstract Background Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children’s hospital in eastern Canada. Results Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children’s end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child’s physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child’s needs and their family’s desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families. |
| first_indexed | 2024-03-11T15:12:22Z |
| format | Article |
| id | doaj.art-076012da8810499cb692a10f7496c8ec |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-03-11T15:12:22Z |
| publishDate | 2023-10-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-076012da8810499cb692a10f7496c8ec2023-10-29T12:40:09ZengBMCBMC Palliative Care1472-684X2023-10-0122111010.1186/s12904-023-01280-8Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemicAdam Rapoport0David B. Nicholas1Rosslynn T. Zulla2Departments of Paediatrics and Family & Community Medicine, Faculty of Medicine, University of TorontoFaculty of Social Work, Central and Northern Alberta Region, University of CalgaryFaculty of Social Work, Central and Northern Alberta Region, University of CalgaryAbstract Background Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children’s hospital in eastern Canada. Results Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children’s end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child’s physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child’s needs and their family’s desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.https://doi.org/10.1186/s12904-023-01280-8Palliative careBereavementPaediatricsCOVID-19Care impacts |
| spellingShingle | Adam Rapoport David B. Nicholas Rosslynn T. Zulla Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic BMC Palliative Care Palliative care Bereavement Paediatrics COVID-19 Care impacts |
| title | Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic |
| title_full | Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic |
| title_fullStr | Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic |
| title_full_unstemmed | Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic |
| title_short | Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic |
| title_sort | balancing pandemic public health restrictions and family support at the end of life palliative care and bereavement experiences of parents whose child died during the covid 19 pandemic |
| topic | Palliative care Bereavement Paediatrics COVID-19 Care impacts |
| url | https://doi.org/10.1186/s12904-023-01280-8 |
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