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[Chronic heart or lung disease and psychosocial stress]
I Spurkland1, T Bjørbaek, O Geiran
1Statens senter for barne- og ungdomspsykiatri, Oslo.
Insights
Pediatric patients undergoing evaluation for heart or lung transplantation experience significant psychosocial stress. Families need comprehensive support to navigate the challenges of life-threatening pediatric illness and transplantation evaluations.
Area of Science:
- Pediatric Psychology
- Transplantation Medicine
- Psychosocial Oncology
Context:
- This study evaluated psychosocial needs of pediatric patients (under 16) referred for heart or lung transplantation at a Norwegian National Hospital between 1990-1997.
- A cohort of 24 children and their families underwent detailed psychosocial assessments to identify support requirements during evaluation and follow-up.
- Patient diagnoses included cystic fibrosis, obstructive lung disease, congenital heart disease, and cardiomyopathy.
Purpose:
- To assess the psychosocial well-being of pediatric patients and their families facing potential heart or lung transplantation.
- To identify the prevalence of psychiatric diagnoses and significant anxiety symptoms within this vulnerable population.
- To determine the need for supportive measures to help families cope with the stress associated with life-threatening pediatric conditions.
Summary:
- Of 24 children assessed, 15 were accepted for transplantation, while others were medically rejected.
- Seven children (29%) met criteria for psychiatric diagnoses (anxiety disorders, depression), with five additional children exhibiting considerable anxiety.
- The cardiomyopathy group reported fewer psychosocial issues compared to heart-lung and congenital heart disease groups.
Impact:
- Findings highlight the substantial stress experienced by families of children with life-threatening conditions requiring transplantation.
- Many families are unaware of or too exhausted to access available support services and resources.
- Emphasizes the critical need for integrated psychosocial support systems for pediatric transplantation candidates and their families.
Abstract:
Ten boys and 15 girls below the age of 16, were referred to the National Hospital in Norway for evaluation for heart or lung transplantation 1990-97. 24 of the children and their families went through a thorough psychosocial assessment in order to assess the supportive measures the children and their families might need for coping with stress during the evaluation and the follow-up period. The patients were divided into three diagnostic groups: Two had cystic fibrosis and one an obstructive lung disease, heart-lung group, eight had congenital heart disease and 13 cardiomyopathy. 15 children were accepted for transplantation and placed on the waiting list. The others were rejected for medical reasons. Seven children (29%) filled the criteria for a psychiatric diagnosis (six anxiety disorders and one depression). Five others had considerable anxiety symptoms. The cardiomyopathy group had fewer problems than the heart-lung and congenital heart disease groups. The study shows that families with children suffering from life-threatening disease live with a great deal of stress and are in need of help and support. Many families are either not aware of their rights or too exhausted to seek help.