Article summary with Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and wellbeing by Klassen et al. - 2007

Why can caregiving to children with cancer be described as an unexpected career?

Children with cancer receive a large part of their treatment at home. Caregiving demands on parents have increased. There is often intensive and prolonged treatment, financial costs and pressures, fear of the child’s death, and negative impacts on family relationships. Parents go through a dynamic process of a series of stages that require adaptation and restructuring of responsibilities over time.

Why are some parents of children with cancer able to cope and adjust better than others?

Certain factors can explain variability in the health and wellbeing of parents of children with cancer. Especially child characteristics (e.g. time since diagnosis, child behavior) and indicators of coping (e.g. social support, family cohesion) are related to parental psychological health. There are also other factors, such as parental self-perception and physical health, that need to be further researched. One way to study the effect of having a child with cancer on parental mental wellbeing is by using the caregiver burden model.

What is the caregiver burden model?

The caregiver burden model includes six main constructs:

• The background variables address the setting in which caregiving takes place, with an emphasis on the family social and economic characteristics.

• Child characteristics include factors considered to be objective conditions of caregiving. They are signs of the child’s impairment and comprise actual care demands.

• Caregiver strain refers to caregiving demands (the daily demands on the caregiver as well as conflict between the caregiving role and occupational roles) and perception of formal care (the extent to which caregivers report formal care as being family-centered).

• Self-perception refers to the caregiver’s internal state.

• Coping factors.

• Caregiver physical and psychological health as measures of outcome.

How do background and context variables affect parental mental health?

Poorer psychological wellbeing is related to various factors including lower socioeconomic status and not being paid in work. Also, being the child’s mother instead of the father and being black race instead of white is related to more psychological distress.

How do child characteristics affect parental mental health?

The following child characteristics are associated with poorer caregiver psychological wellbeing: anxiety, depression, behavior problems, emotional distress, poorer parental perception of the child’s health, functional impairment, and poorer quality of life. Parents showed more signs of psychological distress when their child had a poorer prognosis, was hospitalized at the time of the study, or had a higher number of hospitalizations.

How does caregiver strain affect parental mental health?

Having work negatively affected by the child’s illness, not being employed at the time of the illness, employment problems caused by the child’s illness, and financial problems caused by the illness are all related to psychological distress. Poorer parental psychological wellbeing was related to more uncertainty, their ability to deal with it, and increased caregiver strain. Stress that parents experienced during treatment predicted off-treatment anxiety and posttraumatic stress.

How does self-perception affect parental mental health?

Self-perception can be indicated with a caregiver's self-esteem and sense of mastery. Psychological distress was found to be related to low mastery, performance assertiveness, and higher repressive adaptation.

How do coping factors affect parental mental health?

Coping factors include:

• Social support (the informal support derived from the social relationships of the caregiver with extended family, friends, and neighbors).

• Family function (the extent to which a family works as a unit).

• Stress management (the number of strategies and practices of the caregiver in response to problematic situations).

 Psychological distress in parents is related to lower perceived social support, lower family cohesion, and more family stress.