Psychosocial situation of parents of children with congenital heart disease

Sammanfattning: 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 parental gender. 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 are discussed.