Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study
Abstract Background and objectives Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-04-01
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| Series: | BMC Pediatrics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12887-023-03944-z |
| _version_ | 1797849874167758848 |
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| author | Natalie Pitch Laura Davidson Samantha Mekhuri Richa Patel Selvi Patel Munazzah Ambreen Reshma Amin |
| author_facet | Natalie Pitch Laura Davidson Samantha Mekhuri Richa Patel Selvi Patel Munazzah Ambreen Reshma Amin |
| author_sort | Natalie Pitch |
| collection | DOAJ |
| description | Abstract Background and objectives Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic. Methods We conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis. Results Twelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic’s impact on family caregiver well-being (mental toll, physical toll). Conclusions Family caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children. |
| first_indexed | 2024-04-09T18:52:18Z |
| format | Article |
| id | doaj.art-fe7ac356e9884333b1a8859625a8a47e |
| institution | Directory Open Access Journal |
| issn | 1471-2431 |
| language | English |
| last_indexed | 2024-04-09T18:52:18Z |
| publishDate | 2023-04-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Pediatrics |
| spelling | doaj.art-fe7ac356e9884333b1a8859625a8a47e2023-04-09T11:27:08ZengBMCBMC Pediatrics1471-24312023-04-0123111310.1186/s12887-023-03944-zExploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative studyNatalie Pitch0Laura Davidson1Samantha Mekhuri2Richa Patel3Selvi Patel4Munazzah Ambreen5Reshma Amin6Division of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick ChildrenDivision of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick ChildrenDivision of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick ChildrenDivision of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick ChildrenDivision of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick ChildrenDivision of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick ChildrenDivision of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick ChildrenAbstract Background and objectives Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic. Methods We conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis. Results Twelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic’s impact on family caregiver well-being (mental toll, physical toll). Conclusions Family caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.https://doi.org/10.1186/s12887-023-03944-zChildren with medical complexityFamily caregiversCaregiver burdenCOVID-19 pandemic |
| spellingShingle | Natalie Pitch Laura Davidson Samantha Mekhuri Richa Patel Selvi Patel Munazzah Ambreen Reshma Amin Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study BMC Pediatrics Children with medical complexity Family caregivers Caregiver burden COVID-19 pandemic |
| title | Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study |
| title_full | Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study |
| title_fullStr | Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study |
| title_full_unstemmed | Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study |
| title_short | Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study |
| title_sort | exploring the experience of family caregivers of children with medical complexity during covid 19 a qualitative study |
| topic | Children with medical complexity Family caregivers Caregiver burden COVID-19 pandemic |
| url | https://doi.org/10.1186/s12887-023-03944-z |
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