Investigación reciente

Qual Life Res. 2003 Sep;12(6):655-66.

Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children.

Lawoko S, Soares JJ.
Contact: Unit of Mental Health, Samhällsmedicin, Stockholm, Sweden.

We compared quality of life among parents of children with congenital heart disease (PCCHD, n = 1092), parents of children with other diseases (PCOD, n = 112) and parents of healthy children (PHC, n = 293). We also identified determinants of quality of life among the parents. The parents completed a questionnaire about such areas as quality of life and financial situation. The design was cross-sectional and data were collected during 20 consecutive days. The univariate analyses showed that PCCHD tended to report lower quality of life than PHC. Mothers reported lower quality of life than fathers, with the lowest levels among mothers of children with CHD. The multivariate analyses revealed however that variables such as distress, hopelessness and financial situation were more important in explaining the reduced quality of life than parental gender and the presence/severity of the children's heart diseases. We corroborated previous findings and may have provided new insights into the quality of life experiences of parents of children with CHD that may be important when considering interventions to improve their situation.

Psychol Health Med. 2008 Aug;13(4):381-8

Perceived parenting style, self-esteem and psychological distress in adolescents with heart disease.

Cohen M, Mansoor D, Gagin R, Lorber A.
Contact: Social Work Department, Rambam - Health Care Campus, Haifa, Israel.

The aim of the study was to assess the relationships between perceived parenting style, depressed mood, anxiety and self-esteem in adolescents with heart disease compared with healthy adolescents. Forty-five adolescents, aged 12-18 with congenital or acquired heart disease and 50 healthy age-matched adolescents answered perceived parental behaviour, self-esteem, depressed mood and anxiety questionnaires. The study group reported higher perceived acceptance and lower perceived parental control than healthy adolescents, but similar levels of depressed mood, anxiety and self-esteem. Fischer's r-to-z transformation and regression analyses showed different associations between perceived parenting style and depressed mood, anxiety and self esteem. In the study group, higher perceived parental acceptance was associated with lower depressed mood and higher self-esteem, whereas these associations were not significant in the control group. In the control, but not the study group, higher perceived parental control was associated with lower depressed mood and lower anxiety. Parenting style proved to exert a differential effect on adolescents with and without heart disease. For the former, perceived parental acceptance had a more substantial effect on psychological well-being than perceived parental control. Professionals caring for these adolescents should be aware of the special importance of parenting style on the well-being of adolescents with heart disease, and address this issue in the clinical setting with the patients and their parents.

Cardiol Young. 2002 Dec;12(6):524-30.

Does age at the time of elective cardiac surgery or catheter intervention in children influence the longitudinal development of psychological distress and styles of coping of parents?

Utens EM, Versluis-Den Bieman HJ, Witsenburg M, Bogers AJ, Hess J, Verhulst FC.
Contact: Department of Child and Adolescent Psychiatry, Erasmus Medical Center, Sophia Children's Hospital, Rotterdam, The Netherlands. utens@psys.azr.nl

AIMS: To assess the influence of age at a cardiac procedure of children, who underwent elective cardiac surgery or interventional cardiac catheterisation for treatment of congenital cardiac defects between 3 months and 7 years of age, on the longitudinal development of psychological distress and styles of coping of their parents.
METHODS: We used the General Health Questionnaire to measure psychological distress, and the Utrecht Coping List to measure styles of coping. Parents completed questionnaires on average respectively 5 weeks prior to, and 18.7 months after, cardiac surgery or catheter intervention for their child.
RESULTS: Apart from one exception, no significant influence was found of the age at which children underwent elective cardiac surgery or catheter intervention on the pre- to postprocedural course of psychological distress and the styles of coping of their parents. Across time, parents of children undergoing surgery reported, on average, significantly higher levels of psychological distress than parents of children who underwent catheter intervention. After the procedure, parents of children who underwent either procedure reported significantly lower levels of psychological distress, and showed a weaker tendency to use several styles of coping, than did their reference groups.
CONCLUSION: Age of the children at the time of elective cardiac surgery or catheter intervention did not influence the course of psychological distress of their parents, nor the styles of coping used by the parents. Future research should investigate in what way the age at which these cardiac procedures are performed influences the emotional and cognitive development of the children.

Cardiol Young. 2007 Dec;17(6):638-45. Epub 2007 Oct 22.

Long-term psychological distress, and styles of coping, in parents of children and adolescents who underwent invasive treatment for congenital cardiac disease.

Spijkerboer AW, Helbing WA, Bogers AJ, Van Domburg RT, Verhulst FC, Utens EM.
Contact: Department of Child and Adolescent Psychiatry, Erasmus Medical Centre, Rotterdam, The Netherlands.

OBJECTIVE: To assess the level of psychological distress and styles of coping in both mothers and fathers of children who underwent invasive treatment for congenital cardiac disease at least 7 years and 6 months ago.
METHODS: The General Health Questionnaire and the Utrecht Coping List were completed by parents of children with 4 different cardiac diagnoses.
RESULTS: Overall, in comparison with reference groups, parents of children treated for congenital heart disease showed lower levels of distress, manifested as lower levels of somatic symptoms, anxiety and sleeplessness and serious depression. Mothers of children with congenital heart disease reported significantly more somatic symptoms than fathers. Further, compared to reference groups more favourable outcomes on coping were found; parents in our sample showed a weaker tendency to use styles of coping such as reassuring thoughts and less often expressed negative emotions (anger, annoyance). Mothers in our sample appeared to seek social support more often compared to fathers.
CONCLUSION: Overall, lower levels of psychological distress and few differences in styles of coping compared to reference groups were found in parents of children treated for congenital heart disease. We need to remain alert however, for individual parents at risk of adjusting poorly.