The Burden of Care: Mothers' Experiences of Children with Congenital Heart Disease.
Sakinne Sabzevari, Monirsadat Nematollahi, Tayebeh Mirzaei and 1 others
PMID 27713900WHAT IT FOUND
Mothers of children with congenital heart disease described caring for them as a heavy burden, marked by tension, distressing thoughts and practical daily difficulties.
Key findings
01All mothers experienced heavy burden of care for their children with congenital heart disease, multiple tensions and problems in the care process, and a lot of suffering.
02The analysis grouped the care experiences into three categories: facing the tension, involvement with internal thoughts, and difficulties of the care process.
03The study included 18 participants and 20 interviews: 16 mothers, one father and one nurse.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Findings are from a qualitative interview study and cannot be generalised, as the authors state. The sample was small and specific to mothers of children with congenital heart disease in one geographical area in Iran. Children referred to the hospitals were described as being in advanced stages of disease, so the experiences may not represent all families with congenital heart disease. The study included one father and one nurse as well as mothers, but the main theme was described for mothers. The paper recommends nurse interventions, including life skills training, but no intervention was tested.
The easy way to misread this
Do not conclude that life skills training for mothers reduces their burden. This was a qualitative interview study of mothers' experiences, and no intervention was tested.