Parents' perceptions of their children's cancer-related symptoms during treatment: a prospective, longitudinal study.
BACKGROUND
This article describes a comprehensive assessment of treatment-related symptoms in children aged 0-18 years undergoing cancer treatment from the perspective of their parents.


OBJECTIVE
The aim was to describe which symptoms that, according to parents, cause most problems for children receiving cancer treatment and to explore whether there is a relationship between parents' ratings of their children's symptoms and their own post-traumatic stress at one week (T1), two months (T2), and four months (T3) after a child's cancer diagnosis.


METHODS
In total, 214 parents (107 mothers and 107 fathers) of 115 children answered a modified version of the Memorial Symptom Assessment Scale 10-18 and the PTSD Checklist Civilian Version over the telephone at T1-T3.


RESULTS
According to parents, the following symptom areas cause the most problems for children undergoing cancer treatment: emotional distress, fatigue, nutrition, and pain. Pain is the most problematic area. The prevalence of most symptoms and the symptom burden decreases over time. Parents' ratings of their children's symptom burden and their own emotional distress, and mothers' and fathers' ratings of their child's symptom burden, are associated. Parents of adolescents report a greater symptom burden for their child than the parents of the youngest children.


CONCLUSIONS
The opinions of both the patient and the parent are important in pediatrics. The results of this study can be used to guide health care professionals within pediatric oncology in their discussions of cancer treatment's adverse effects with patients and families. Not only the expectations and potential interventions but also the sources of worry should be discussed.
Pöder
Ulrika
U
Section of Caring Sciences, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden. ulrika.poder@pubcare.uu.se
Ljungman
Gustaf
G
von Essen
Louise
L
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005221:Fatigue / Q000209:etiology / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000150:complications / Q000523:psychology* / Q000628:therapy; D010146:Pain / Q000209:etiology / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D010465:Perception; D011446:Prospective Studies; D012720:Severity of Illness Index; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology*