Illness and Suffering   /   Fall 2006   /    Articles

Hoping, Willing, and Narrative Re-envisioning

Cheryl Mattingly

Since January 1997, a group of primarily anthropologists and occupational therapists, including myself, has conducted a longitudinal ethnography of African-American families who have children with serious and chronic illnesses or disabilities. Through the years, we have come to know the ebbs and flows of chronic illness and to witness what such illness means in the never-ending process of negotiating health care with shifting casts of health professionals and changing bureaucratic processes. We accompany families to clinical visits, observe, and—where we are allowed—videotape such visits, and separately interview participants about what they perceived happened in their health- care encounters. We also observe and videotape children and families at home and in the community, especially at key family events. We have been to many hospital events, but also to birthday parties, drill team parades, christenings, and funerals. This kind of longitudinal design has revealed a great deal about clinical encounters as events in family lives and about multiple perspectives between families and clinicians as these develop and change over time. It has also illuminated how interwoven hoping and willing can be for people who must learn to face suffering as part of daily life.

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