Abstract
AIMS AND OBJECTIVES To investigate parents' experiences, coping ability and quality of life while monitoring their sick child with hypoplastic left heart syndrome at home.
BACKGROUND Interstage home monitoring for children with hypoplastic left heart syndrome reduces interstage mortality between Norwood stages I and II. Little is known about the psychosocial impact of interstage home monitoring.
DESIGN Prospective mixed-method study.
METHOD This study assessed the psychosocial impact on parents during IHM. This contains for quantitative assessment the Short Form Health Survey questionnaire and the Impact of Family Scale administered 1 and 5 weeks following discharge before and after stage II. For qualitative assessment semi-structured interviews focussing on the postdischarge coping strategies were conducted twice, 5 weeks after hospital discharge before and after stage II.
RESULTS Ten infants (8 males) with hypoplastic left heart syndrome (n=7) or other types of univentricular heart malformations (n=3), and their parents (9 mother/father 2-parent households, 1 single mother) were included. There were no interstage deaths. Mental Health Composite Summary scores were low in both parents (mothers: 40.45±9.07; fathers: 40.58±9.69), and lowest for the item "vitality" (mothers: 37.0±19.46; fathers: 43.12±25.9) before and after stage II. Impact of Family Scale values showed higher daily and social burdens for mothers. "Becoming a family" was the most important task as coping strategy to equilibrate the fragile emotional balance. The parents judged interstage home monitoring as a protective intervention.
CONCLUSIONS Although psychosocial burden before and after stage II remains high, becoming a family is an essential experience for parents and confirms their parenthood. This article is protected by copyright. All rights reserved.
Stoffel, Gaby