Learning to suffer: Pain response in a community of Saudi Arab children with sickle cell disease

Abstract

The purpose of the dissertation research is to describe the Qatif sociocultural response to children with sickle cell disease (SCD) and pain and how the Qatif sociocultural environment shapes the responses of children with SCD and pain. Significant outcomes of the project include descriptions of Arab Muslim child, parent, and community perspectives on chronic or ongoing pain, and the effect of cultural orientation on the development of pain response patterns. The study method was focused ethnography. Participants included children with SCD and family caregivers during illness episodes. Individuals associated with the Qatif community representing specific community perspectives were also interviewed. Community informants included nurses, physicians, schoolteachers, social workers, and adults with SCD. Data management and analysis were facilitated using ATLAS.ti qualitative research software (Muhr, 1997). The experiences and views of participant groups were described. Categories and themes extracted from data linked the views of the Qatif community, family caregivers, and children with SCD. Mothers provide the majority of care for children in pain, and resort to using biomedical institutions when symptoms become unmanageable. Most children with SCD live their lives fully with transitory pauses for pain episodes. Qatif family and community social structures are supportive of children and adults with SCD and pain with the goal that all community members participate fully in family and community life. Three overarching themes are identified: "Having pain affirms weakness", "Control is in our hands", and "A place for everyone here." Study results demonstrate that religious precepts drawn from basic Islamic teachings support both tolerance of pain and suffering, and seeking cures. Benefits of suffering pain with patience include enhancement of the sufferer's relationship with God, family, and community. Using caring and molding responses, family and community members guide children to endure pain for intrinsic spiritual and social benefits. Implications for practice and further research are described in detail in the dissertation.