Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis.
Dena Schulman-Green, Shelli L Feder, J Nicholas Dionne-Odom and 6 others
PMID 33334232WHAT IT FOUND
Family caregivers supporting adults with chronic, life-limiting illness described learning medications, symptoms and daily care, arranging home resources, and advocating for patients.
They also needed emotional, practical and respite support; their own health and distress affected care.
Key findings
01Caregivers reported learning the patient's condition and caregiving tasks, activating health care resources, and providing support in various ways.
02Caregivers sustained their role by activating resources such as emotional support from other caregivers, prayer and respite care.
03Caregivers reported nearly 40 distinct negative emotions, and emotions such as discouragement could lessen illness management.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
This is a synthesis of qualitative reports, not a trial or intervention study. It cannot show that any caregiver support improves patient self-management. The literature was emerging and did not reach saturation for all processes and factors. The included studies were too few to examine differences by care setting, country, or type of illness. Many included studies gave incomplete caregiver information, such as relationship to patient, race, ethnicity, and summary statistics. This makes comparison across studies difficult. Caregiver samples were often hard to recruit and lacked diversity, with mostly spouses and urban participants. Some primary studies reported recall bias or interviews conducted with the patient present. Some included articles lacked detail on study design or analytic approach.
Declared interests
The authors declared no potential conflicts of interest. The article is listed as supported by NIH extramural and U.S. Government, non-PHS research support.
The easy way to misread this
Do not read this as evidence that any caregiver intervention improves patient self-management. It is a qualitative metasynthesis of caregiver reports, not a test of treatments or outcomes.