What Does the Literature Say?


Several decades of research on the distress experienced by parents of children with cancer, patients and siblings now exists. Here is a summary of what we have learned:

Resilience

Most parents and children are resilient and are able to take good care of their child. That does not mean they don’t feel strong emotions or may feel quite depressed along the way. (Barrera et al., 2004).

This also doesn’t mean you shouldn’t seek help along the way, even if you know you’ll be OK in the end. Parents with good social support are better able to support their sick children (REFS to be added)

About one-third of parents and children actually score above clinical levels of depression and anxiety at any one time (REFS to be added).

Parents React Differently

Mothers express more distress than fathers and use social support differently (Wijnberg-Williams et al., 2006).

Things Generally Get Better With Time

Parents who are tested shortly after their child is diagnosed with cancer score high on measures of distress, above what is typical for parents in the general population. These scores generally go down when re-measured at 3 months and go down even further by 6 months after a child’s diagnosis. The scores are usually normal, or nearly so, when measured 5 years after diagnosis (Dolgin et al., 2007; Steele et al., 2004; Wijnberg-Williams et al., 2006).

Sometimes, Distress Levels Stay High Longer

It is possible that some parents will remain distressed because of the track or complexity of their child’s illness and treatment, or because of the heavy burden of care giving some parents experience. For example, some single parents may find it particularly distressing to try to meet the demands of their sick and healthy children, while also maintaining a sufficient presence at work to keep their job and maintain the family health insurance (Brown et al., 2008). Also, parents who do not speak English fluently may feel more burdened, too, in the constant interactions with medical professionals who do not communicate to them in their native language (Dolgin et al, 2007).

Siblings Survive

Siblings of children with cancer experience distress, especially around the time of diagnosis, but usually adjust well and do not have significant long-term problems (Alderfer et al., 2010).A small portion of siblings do experience problems with post-traumatic stress symptoms, negative emotions, school, and quality of life.

Marriages Survive

While it was once thought the stress of a child’s cancer led to a high divorce rate among parents of children with cancer, research in a number of countries has shown this is not true. Divorce rates for parents of children with cancer are actually often lower than the divorce rate in the general population (Syse et al. 2010).

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