Advocacy: essential work for mothers of children living with cancer

This paper, based on focus group interviews with mothers whose children have had cancer, describes the advocacy work in which mothers engaged during the period of diagnosis and treatment. Among the mothers' manifold responsibilities, advocacy was one of the most compelling. It was described as if it was a taken-for-granted moral imperative. Some mothers said they felt that it was necessary because of (1) perceived errors during diagnosis or later during the process of treatment; (2) perceived understaffing; (3) advice given by other mothers or fathers; and (4) perceived lack of coordination and communication in the medical care system. Many coped with the need to advocate through educating themselves, by keeping extensive notes and journals and by talking to other parents about their experiences. The paper concludes with clinical practice implications and recommendations for policy consideration including acknowledgment of the significant role of optimal family cohesion for managing the stresses and strains of advocacy and other home health care work; appointment of parent-child advocates associated with hospitals that provide pediatric oncology care; establishment of in-service training and education for guardians and medical care teams regarding their mutual roles and responsibilities; as well as, the provision of guaranteed and paid parental leave policies for guardians whose children have a catastrophic or severe chronic medical condition.