Investigación reciente

J Psychosom Res. 2002 Apr;52(4):193-208.

Distress and hopelessness 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.

OBJECTIVE: We examined differences in distress (i.e., depression, anxiety, and somatisation) and hopelessness (e.g., suicide ideation) among parents of congenital heart disease (CHD) children (PCCHD, n=1092), parents of children with other diseases (PCOD, n=112), and parents of healthy children (PHC, n=293). In addition, we determined the proportion of parents in each group whose scores in distress and hopelessness, respectively, exceeded norms for psychiatric outpatients (POPN) and depressed people, and identified determinants of distress and hopelessness among all parents, and the PCCHD.
METHOD: The parents completed a questionnaire about such areas as distress and hopelessness. The design was cross-sectional and data were collected during 20 consecutive days.
RESULTS: PCCHD were generally at higher risk of distress and hopelessness. A significant number of parents, in particular PCCHD, reported levels of distress and hopelessness within/above POPN and depressed people, respectively. Mothers within all parent groups had higher levels of distress and hopelessness than fathers, with the highest levels among mothers of children with CHD compared to mothers in the other groups. Fathers of children with CHD were doing worse than fathers belonging to the other groups. There were no differences between PCOD and PHC. Variables such as employment status and financial situation explained more of the variation in distress and hopelessness among parents than the diseases of their children.
CONCLUSION: We corroborated previous findings and provide new insights into the experiences of PCCHD that may be of importance when considering intervention. Further research concerning the parents, in particular PCCHD, at risk of developing psychosocial problems is needed.

Cardiol Young. 2000 May;10(3):239-44.

Psychological distress and styles of coping in parents of children awaiting elective cardiac surgery.

Utens EM, Versluis-Den Bieman HJ, Verhulst FC, Witsenburg M, Bogers AJ, Hess J.
Contact: Department of Child and Adolescent Psychiatry, Erasmus Medical Centre Rotterdam, The Netherlands.

AIMS: We sought to assess the level of psychological distress, and the styles of coping of, parents of children with congenital heart disease. The study was based on questionnaires, which were completed, on average, four weeks, with a range from 0.1 to 22.1 weeks, prior to elective cardiac surgery or elective catheter intervention.
METHODS: We used the General Health Questionnaire, and the Utrecht Coping List, to compare scores from parents of those undergoing surgery, with scores of reference groups, and with scores of the parents of those undergoing intervention.
RESULTS: Overall, in comparison with our reference groups, the parents of the 75 children undergoing surgery showed elevated levels of psychological distress, manifested as anxiety, sleeplessness, and social dysfunctioning. They also demonstrated less adequate styles of coping, being, for example, less active in solving problems. With only one exception, no differences were demonstrated in parental reactions to whether cardiac surgery or catheter intervention had been planned. The mothers of the 68 patients who were to undergo cardiac surgery, however, reported greater psychological distress and manifested greater problems with coping than did the fathers.
CONCLUSION: Elevated levels of psychological distress, and less adequate styles of coping, were found in the parents of patients about to undergo cardiac surgery, especially the mothers, when compared to reference groups. Future research should investigate whether these difficulties persist, and whether this will influence the emotional development of their children with congenital cardiac malformations.

Cardiol Young. 2003 Feb;13(1):3-6.

The views of young people with congenital cardiac disease on designing the services for their treatment.

Kendall L, Sloper P, Lewin RJ, Parsons JM.
Contact: Paediatric Cardiac Department, Yorkshire Heart Centre, Leeds General Infirmary, Leeds, UK.

BACKGROUND AND PURPOSE: There is little documented evidence of young people with congenital cardiac disease being consulted as to what help, if any, they really need in relation to their condition. Most research concentrates on the medical aspects of the condition. There are studies of psychological and social functioning, but few have directly sought the opinions of the young people. More recent research has indicated a need for health professionals to develop services to meet both psychosocial and physical needs of young people with congenital cardiac disease. The findings of the recent Kennedy Report support this need. The purpose of this study was to explore the views of young people with a range of congenital cardiac conditions, on what would help them better deal with their condition, and when and how help might be provided.
METHODS: This was a qualitative study using semi-structured interviews. We interviewed 16 young people in their own home. Interviews were tape-recorded and transcribed. Analysis was conducted using the "Framework" method.
RESULTS: Whilst most of the young people interviewed actively manage their condition, they think more support from others would be beneficial. Issues of activity and communication were cited most often as areas requiring more understanding from people they interact with, for example teachers and peers. The discussion focuses on how health professionals might change or develop their practice to help young people better cope with their condition.
CONCLUSIONS: Most of the young people interviewed in this study had developed their own strategies for coping with their condition. Although this is a small study, the young people provided important suggestions as to how health professionals could better develop current services.

Cardiol Young. 2003 Feb;13(1):20-7.

The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease.

Kendall L, Sloper P, Lewin RJ, Parsons JM.
Contact: Paediatric Cardiac Department, Yorkshire Heart Centre, Leeds General Infirmary, Leeds, UK.

BACKGROUND AND PURPOSE: Although much previous research has focused on the medical aspects of congenital cardiac disease, there is a growing body of research which suggests that families may need help and support with the wider issues associated with the medical condition. We have previously ascertained from young people with congenital cardiac disease their views on this subject. The purpose of this study was to obtain the views of their parents about the need for, and shape of, services for rehabilitation.
METHODS: This was a qualitative study using semi-structured interviews. We interviewed 17 parents in their own home. Interviews were tape-recorded and transcribed.
RESULTS: Parents would welcome more help and support from health professionals to enable them to manage more effectively the condition with their children. Particular areas of concern relate to the information they receive about the condition; communication between themselves and health professionals; establishing safe levels of activity; and managing the condition at school.
CONCLUSIONS: This is a small study of the experiences and views of parents, which provides some important information on ways in which health professionals could address the current lack of services for rehabilitation.

Cardiol Young. 2002 Jul;12(4):408-10.

Provision of services for rehabilitation of children and adolescents with congenital cardiac disease: a survey of centres for paediatric cardiology in the United Kingdom.

Lewin RJ, Kendall L, Sloper P.
Contact: British Heart Foundation Rehabilitation Research Unit, University of York, UK.

A postal questionnaire survey of the 17 centres for paediatric cardiology in the UK investigated the attitudes of staff towards rehabilitation and the current level of provision. The majority of respondents (82%) believed they should provide rehabilitation for their patients, but only one centre had a programme for rehabilitation. Few respondents (18%) believed they were meeting the needs of their patients' for rehabilitation. Major barriers to providing rehabilitation were funding and the wide geographical catchment areas.

Int J Rehabil Res. 2007 Mar;30(1):27-32.

The German system of medical in-patient rehabilitation in children and adolescents.

Petersen C, Widera T, Kawski S, Kossow K, Glattacker M, Koch U.
Contact: Institute and Policlinics of Medical Psychology, University Clinic Hamburg-Eppendorf, Hamburg, Germany.

The prevalence of chronic health conditions in young people is constantly increasing. A very important question is in which setting (in-patient or out-patient) these patients should ideally be treated. In Germany, in-patient rehabilitation of children and adolescents with chronic health conditions has a long history. So far, however, no systematic data concerning structure, process or outcome quality have been assessed across facilities. Therefore, as a first step, a conjoint project of the statutory pension and health insurance institutes was initiated to assess and to describe the structure quality of in-patient medical rehabilitation clinics for children and adolescents in Germany. A questionnaire was filled out by the clinic directors which covered general information and the characteristics of structure quality, as well as structure-affiliated process characteristics of the clinics. The survey was planned as a cross-sectional study. A total of 177 clinic addresses were available. The return rate was 83.3%. Eventually, 79 clinics were included in the analysis. In sum, the results underline the heterogeneity of services in the field of child and adolescent rehabilitation. In conclusion, in-patient rehabilitation plays a major role for the treatment of children and adolescents with chronic health conditions in Germany. The results allow an analysis of the current clinic structures.

J Dev Behav Pediatr. 2006 Feb;27(1):11-7.

The needs of families of children with heart disease.

Wray J, Maynard L.
Contact: Department of Paediatrics, Royal Brompton and Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, United Kingdom.

The aim of the study was to assess the perceived needs of children with heart disease of their parents and siblings and to determine the support and services that the families were currently receiving. A mailed survey of 447 families of children with congenital or acquired heart disease was conducted. Completed questionnaires were received from 209 (46.8%) families, 124 (59%) of whom had unmet needs in one or more areas. Information was the area in which there was the greatest degree of expressed need. While the majority of families received support from family and friends, community-based statutory services and support were less adequate. However, a number of families who were not receiving support from community professionals did not want any intervention. It is concluded that interventions need to be targeted so that those families needing additional services and support receive them. Implications for the development of an evidence-based children's cardiac liaison nursing service are discussed.

PSYNDEXplus Literature and Audiovisual Media Universitaet Freiburg i. Br., Wirtschafts- und Verhaltenswissenschaftliche Fakultaet. Regensburg: Roderer (2005).

Evaluation of the family-oriented treatment concept in the aftercare clinic Tannheim illustrated with children with heart diseases and mucoviscidosis and their parents.

West, Christiane A.
Contact: Wirtschafts- und Verhaltenswissenschaftlichen Fakultaet der Universitaet Freiburg

Die Auswirkungen der Rehabilitation auf herzkranke und mukoviszidosekranke Kinder und Jugendliche sowie ihre Eltem und Geschwister werden untersucht. Dazu wurde ein kombiniertes Warte-Kontrollgruppendesign in Verbindung mit einem indikationsspezifischen, prospektiven Ein-Gruppen-Prae-Post-Design zur prozessorientierten Evaluation des stationaeren und poststationaeren Therapieverlaufs eingesetzt. Die Experimentalgruppe (76 Familien herzkranker Kinder und 64 Familien mit mukoviszidosekranken Kindern) wurde zu drei Messzeitpunkten untersucht (bei Anreise, Abreise sowie sechs Monate nach der Massnahme), die Warte-Kontrollgruppe (48 bzw. 45 Familien) zu zwei Messzeitpunkten (vier Wochen vor Antritt der Massnahme sowie bei Anreise). Erfasst wurden Variablen der koerperlichen und der psychischen Befindlichkeit, der gesundheitsbezogenen Lebensqualitaet sowie der familiaeren Balance. Ergaenzend wurden medizinische Parameter erfasst. Die Zielerreichung der Eltern wurde zusaetzlich mittels eines selbsterstellten, strukturierten Fragebogens erhoben. Die insgesamt positive Bewertung der Zielerreichung durch die Eltern beider Krankheitsgruppen sowie durch die Therapeuten belegte die Wirksamkeit des Behandlungskonzepts. Sowohl am Ende der Rehabilitation als auch sechs Monate danach zeigten sie sich sehr zufrieden mit ihrem Aufenthalt und der erhaltenen Behandlung. Bei den Patientenkindern waren bezueglich ihrer koerperlichen Gesundheit in den objektiven medizinischen Parametern kleine Besserungseffekte durch die Rehabilitationsmassnahme festzustellen. Das psychische Wohlbefinden verbesserte sich sowohl bei den Herzpatienten als auch bei den Mukoviszidosepatienten im Zuge der Rehabilitation. Bei den Mukoviszidosepatienten nahm ausserdem die gesundheitsbezogene Lebensqualitaet zu. Sechs Monate nach Abschluss der Rehabilitation zeigte sich im Fremdurteil der Eltern beider Krankheitsgruppen ein deutlicher Rueckgang der psychischen Auffaelligkeiten. Die Therapieerfolge liessen sich bei den Herzpatienten in allen drei Bereichen auch sechs Monate nach Ende der Rehabilitationsmassnahme noch nachweisen, waehrend bei den Mukoviszidosepatienten die Belastung wieder nahezu das Ausgangsmass erreichte. Hinsichtlich psychischer Auffaelligkeiten war bei den Geschwisterkindern in der Katamnese ein deutlicher Rueckgang zu verzeichnen. Insgesamt belegt die vorliegende Evaluationsstudie die Wirksamkeit des familienorientierten Behandlungskonzeptes fuer Kinder und Jugendliche mit angeborenen Herzerkrankungen und Mukoviszidose sowie fuer ihre Eltern.

Source: Database PSYNDEX, produced by the Institute for Psychology Information, University of Trier (