Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis.
Amie Koch, Arthi S Kozhumam, Erika Seeler and 2 others
PMID 33780717WHAT IT FOUND
Parents of children with complex life-threatening conditions felt overwhelmed by home nursing tasks, medical decisions, coordination, work, school, relationships, and finances.
Caregiving often exceeded resources, causing strain, with job, school, relationship, and child loss reported and some positive coping.
Key findings
01Parents reported performing complex home medical and nursing tasks, including managing IV pumps, feeding tubes, drains, ventilators, dressing changes, tracheostomy, ostomy, central line care, nasogastric tube placement, medications, CPR, infection control, pain management, and nutrition.
02Caregiving demands surpassed available resources in every analyzed case, with overload linked to insufficient physical, psychological, social, emotional, and financial resources.
03Role exits included job loss, leaving school or law school, separation or divorce, and the death of a child.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The interviews were collected for a larger study on medical decision making, not specifically to study parental roles, so the questions may not have fully captured role strain, conflict, overload, and exit. The analysis used existing interviews from 15 cases at one academic medical center in the southeastern United States, so it may not represent other settings, families, or conditions. The data were collected between 2008 and 2011, so current care systems, insurance, and home health supports may differ. The study reports experiences of parents and themes, not measured effects of any intervention or provider strategy.
Declared interests
The authors declare no potential conflicts of interest. The paper reports that the original data were collected between 2008 and 2011 with grant number 1R01-NR010548.
The easy way to misread this
Do not read these themes as proof that a specific provider action caused or can fix parent overload. This qualitative analysis describes experiences of parents in 15 cases and did not test an intervention.