Psychosocial situation of parents of children with congenital heart disease
- Publisher: Karolinska Institutet, Department of Public Health Sciences
MEDICAL AND HEALTH SCIENCES | MEDICIN OCH HÄLSOVETENSKAP | Congenital heart disease, parents, distress, hopelessness, quality of life, social support, satisfaction with care
Background: Current knowledge of the psychosocial situation of parents of
congenital heart disease children (PCCHD) should be interpreted with
caution. Most studies may not be representative of the population in
question, and tend to concentrate mainly on describing PCCHD's distress
experiences. Little is known about determinants of PCCHD's psychosocial
situation in general.
Aims: The general aim of this thesis was to study the psychosocial
situation of PCCHD relative to parents of children with other diseases
(PCOD) and parents of healthy children (PHC), and to identify and
quantify determinants of the parents' psychosocial outcome.
Methods: PCCHD (n=1092), PCOD (n=1 12) and PHC (n=293) completed a
15-page questionnaire about their children's health and demographics, the
parents' demographics, socioeconomic variables, distress, hopelessness,
quality of life, social support and satisfaction with children's care.
The study design was cross-sectional for all papers and data were
collected during 20 consecutive days.
Results: PCCHD were at higher risk of distress and hopelessness than PCOD
and PHC. In 15-34% of PCCHD, the severity of distress matched/surpassed
levels observed in psychiatric outpatients. Corresponding figures for
PCOD and PHC were 4-26% and 3-25% respectively. In addition, 13% of
PCCHD, 12% of PCOD and 5% of PHC were at moderate/high risk of suicide
ideation. Further, PCCHD reported lower quality of life than PHC. In
contrast, the parental groups did not differ on social support. On the
other hand, PCCHD were more satisfied with their children's care than
PCOD. Mothers reported poorer psychosocial outcome (in all studies) than
fathers, with the poorest outcome evident among mothers of CHD.
The multivariate analyses suggested that the presence of CHD, rather than
its severity was a determinant of distress and hopelessness among PCCHD.
However, parental psychosocial problems were more associated with
care-giving burden, socio-economic difficulties, social support and
psychological health than with children's diseases, their severity and
Conclusion: The studies corroborate some previous findings in the field
and provide new insights on psychosocial situation of PCCHD and their
determinants. Important implications of the findings for interventions