A Mixed Methods Analysis of Care Coordination Needs and Desirable Features of an M-Health Application to Support Caregivers of Children With Down Syndrome.
Beth Cosgrove, Kathleen Knafl, Marcia Van Riper
PMID 36257899WHAT IT FOUND
Caregivers of children with Down syndrome said they carried the health record themselves, while providers said information was scattered.
They wanted an app to store records, track care needs, and send reminders.
Key findings
01Although 63% of caregivers perceived benefits from care coordination, 36% reported receiving help coordinating care, and 35% were very satisfied with communication with providers.
02Caregivers described feeling solely responsible for keeping a complete health record and acting as the bridge between primary and specialty providers.
03Desired m-health features included storing provider contact information, tracking growth, medications, laboratory findings, and developmental goals, and sending reminders for appointments and upcoming care needs.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was mostly highly educated mothers from two-parent households, so it may not reflect other caregivers or families with less education. Recruitment happened during the pandemic and provider recruitment was harder because caregivers often communicated through patient portals, so the provider sample may be incomplete. The provider sample focused on primary care and did not include specialty providers, so needs of specialty teams may be missed. The study did not test an m-health application, so it cannot show whether any feature would improve care coordination or be usable in practice. Interview analysis was led by the first author, with only part of the transcripts reviewed by a co-author, so interpretation may not be fully independent.
Declared interests
The authors reported no conflicts of interest.
The easy way to misread this
Do not read the desired features as evidence that an m-health application improves care coordination. This study did not test an application; it described caregiver and provider needs and preferences.