Strong advocates and compliant patients: Socioeconomic status and parental adaptation to pediatric cancer
Gage, Elizabeth Ann
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Serious pediatric illness is one of the most stressful experiences a family can face. As the number one cause of death by disease in children, pediatric cancer brings with it emotional, interpersonal and resource drain on the entire family system. In this dissertation, I examine the adaptive strategies families use after a child has been diagnosed with cancer. Using in-depth interviews and ethnographic observation, I focus on the process through which families develop and enact adaptive strategies to cope with serious pediatric illness and examine the similarities and differences in strategies of families of different SES backgrounds. I find that parents' class based resources, skills, culture and social position all weave together to play important roles in shaping how they (1) understand their role in their child's care, (2) navigate health care institutions, (3) interact with medical professionals, and (4) find meaning in their child's illness. I find that high SES parents experience their child's initial diagnosis as a devastating shock layered with feelings of guilt. There are two major themes that weave through the coping patterns of high SES parents: attempting to exert control over their child's illness and striving to find a greater meaning to their child's suffering. Armed with the skills and confidence derived from educational and occupational experience, high SES parents actively seek out sources of support, conduct sophisticated independent medical research, seek second opinions, and give meaning to their family's struggle through helping other families. By contrast, I find that low SES parents interpreted their family's struggle with pediatric cancer as just another life hardship. This meaning system informed how they approached their children's care and navigated the health care system. They did not look far in the future toward long-term treatment options, possible problems down the line, or long term consequences of this family disruption. I find that the structural characteristics of the low SES parents' class niche constrain the coping options available to them. Their time was spent resolving endless logistical problems: coordinating childcare, negotiating with their bosses for schedule flexibility, finding money to pay looming household bills.