Stress and coping in parents of children with cancer

The general aim of this thesis was to investigate disease-related stress and ways of coping in parents whose children were in active treatment for cancer, or had completed successful cancer treatment. Specifically, the research included examinations of: disease-related stress at various points in time after the child's diagnosis; strain and traumatic stress during and after the child's treatment; the relation of certain demographic and disease-related variables to parental stress; the use of various coping strategies, and the co-variation of coping strategies and level of emotional distress; and the relationships between perceived social support, support-seeking coping, and emotional distress.

The four sub-studies of the thesis involved cross-sectional samples including 265, 413, 395, and 184 parents, respectively. Parents were recruited at Astrid Lindgren Children's Hospital, Stockholm, and at Linköping University Hospital. Both mothers and fathers were invited. The time elapsed since disclosure of the child's diagnosis varied from one week to fourteen years. All four studies were based on quantitative data, collected through self-report inventories. Fourteen various aspects of disease-related stress, and seven types of coping strategies were examined.

Findings indicate that high levels of disease-related distress are particularly frequent among parents during the first period after the diagnosis. However, most aspects of disease-related strain were reported by parents later in time as well. Indeed, years after the diagnosis parents were more anxious than parents of healthy children. Furthermore, although particularly the treatment phase appeared to involve events that affect parents' experience of control, as well as elicit traumatic stress reactions, most of the assessed aspects of stress seemed to occur among parents of children off treatment as well.

Positive perceptions of social support, and a coping style that included problem focusing appeared to make parents less affected by strain. In contrast, the reliance on a coping style including a passive reaction pattern was associated with higher levels of anxiety and depression. An avoidant coping style was also associated with more distress. However, immediately after a child's cancer diagnosis, the distress seemed to be high regardless of whether parents relied on avoidant coping or not.

Findings indicate that parents with lower education and non-Swedish origin may be less resilient to traumatic stress after end of treatment, than parents with higher education levels and a native Swedish background. In contrast, a good prognosis did not seem to make parents less vulnerable to distress than a worse prognosis or a relapse in the child. Moreover, cancer in a child appeared to affect mothers and fathers similarly.

In conclusion, the data suggest that several aspects of disease-relate strain are relevant in various patterns to parents during the child's treatment as well as when treatment is completed, and that such strain can appear at any point in time after a child's cancer diagnosis. Factors other than the passing of time and the termination of treatment account for the majority of variation in parental stress.

List of scientific papers

I. Boman K, Lindahl A, Bjork O (2003). Disease-related distress in parents of children with cancer at various stages after the time of diagnosis. Acta Oncol. 42(2): 137-46.
https://pubmed.ncbi.nlm.nih.gov/12801132

II. Lindahl Norberg A, Lindblad F, Boman K (2004). Parental traumatic stress during and after paediatric cancer treatment. [Submitted]

III. Lindahl Norberg A, Lindblad F, Boman K (2004). Coping strategies parents of children with cancer. Soc Sci Med. [Accepted]

IV. Lindahl Norberg A, Lindblad F, Boman K (2004). Support-seeking, perceived support, and anxiety in mothers and fathers after childrens cancer treatment. [Submitted]