| Continuous learning to provide care |
Connecting with other families Learning from health care professionals Learning from therapists and technicians Learning from training Learning about medical technology Learning by observing Figure it out on my own Navigating through information for complex children Learning what to do in emergencies Learning procedures
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Updating the caregiver team
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Maintaining records |
Physical documentation Identifying patterns Burden of documentation Documenting vitals, health status, and medications Documenting holistic aspects of care Documenting equipment settings Desire for digital records Adapting documentation as a child’s condition changes Transparency of record keeping Concerns for information security Desire to ease record keeping
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Sharing the right information with the right person at the right time in the right way |
Posting information around the home for other caregivers Feeling pressure Financial consequences Communicating with health care professionals Ensuring situation awareness Summarizing changes Memorizing information
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Strategizing care with the caregiver team |
Sharing recent health information Troubleshooting health care issues Identifying appropriate therapies and treatments
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Teaching caregivers about their care situation
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Teaching through documentation Requiring background knowledge of caregivers Sharing their child’s journey Share care expectations for home care tasks (eg, feeding)
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Communication challenges in teaching caregivers |
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| Communicating with their child’s educators |
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| Navigating bureaucratic processes |
Transferring information to governing bodies Preparing caregiver schedules Negotiating personal care hours Managing caregiver hiring Acquiring funding Documenting caregiver information Impacts of COVID-19 on home care services
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