The impact of newly diagnosed chronic paediatric conditions on parental
quality of life
Lutz Goldbeck
Department for Child and Adolescent Psychiatry/Psychotherapy, University Clinic Ulm, Ulm, Germany
(E-mail: lutz.goldbeck@uniklinik-ulm.de)
Accepted in revised form 25 March 2006
Abstract
Objective: Parental functioning and well-being are important aspects of a family’s adaptation to chronic
paediatric conditions. This study investigates the effects of diagnosis (cancer vs. diabetes/epilepsy) and time
since diagnosis on parental quality of life (PQL). Methods: 122 parents (66 mothers, 56 fathers), whose
children were diagnosed and treated for one chronic disease, filled in the Ulm Quality of Life Inventory
for Parents twice within the first three months after the initial diagnosis. The effects of diagnosis and time
(1–2 weeks and 2–3 months after diagnosis) on PQL were analysed separately for mothers and fathers.
Results: Parents of a child with cancer consistently reported lower PQL compared with parents of a child
with diabetes/epilepsy. Only the fathers’ well-being increased significantly within the first three months after
the child was diagnosed for a chronic disease. However, in most of the PQL domains there was a persistent
impairment within the time-frame of this study. Parents of children with a chronic disease were more
satisfied with their family situation than healthy controls. Age of the child was positively correlated with
PQL. Conclusions: A diagnosis of cancer, especially in young children, has a strong negative effect on PQL.
Measuring PQL in a preventive approach would help to identify vulnerable parents and to provide
psychosocial support in time.
Key words: Coping with diagnosis, Parents, Paediatric chronic conditions, Quality of life
Abbreviations: PQL – Parental Quality of Life; QL – Quality of life; ULQIE – Ulm Quality of Life
Inventory for Parents
Introduction
Chronic illness in childhood has a substantial
impact on the patient’s life and on the whole
family system. A paediatric illness is defined as a
chronic health problem if it lasts over twelve
months, affects the child’s normal activities, and
requires a lot of hospitalisations and/or home
health care and/or extensive medical care [1].
From a family perspective, mutual relations be-
tween parents and children have to be considered.
On the one hand, the health status of the child
depends partly on their parents’ psychosocial
situation, on the other hand parental functioning
and well-being is influenced by their child’s
health status [2]. Psychological distress follow-
ing a child’s diagnosis of severe chronic disease
involves risks of long-term psychological and
psychosocial problems for parents and families
[2–8]. Careful assessment of parental psychosocial
status, psychological well-being and functioning is
especially useful, because a chronic illness always
demands parental participation and adaptation to
the new situation [9]. Hence, Cohen found that
‘‘managing the illness in the context of total
family life was associated with the best medical
outcome‘‘[4, p. 157]. Information about parental
functioning allows the identification of families
Quality of Life Research (2006) 15: 1121–1131
Ó
Springer 2006
DOI 10.1007/s11136-006-0068-y