Experiences of hospital care and treatment-seeking behavior for pain from sickle cell disease: qualitative study

To investigate how sociocultural factors influence the management of pain from sickle cell disease by comparing the experiences of those who usually manage their pain at home with the experiences of those who are more frequently admitted to hospital for management of their pain.

Qualitative analysis of semistructured individual interviews and focus group discussions.

57 participants with genotype SS or S/beta-thal (44 participants) or SC (9 participants); the status of 4 participants was unknown. 40 participants took part in focus groups, 6 took part in both focus groups and interviews, and 9 were interviewed only. Participants were allocated to focus groups according to ethnic origin, sex, and the number of times that they had been admitted to the hospital for the management of painful crises during the previous year.

The relation between patients with sickle cell disease and hospital services is one of several major, nonclinical dimensions that shape experiences of pain management and behavior for seeking health care. Participants' experiences of hospital care show a range of interrelated themes that are common to most participants across variables of sex, ethnicity, and which hospital was attended. Themes identified included the mistrust of patients with sickle cell disease, stigmatization, excessive control (including both overtreatment and undertreatment of pain) and neglect. Individuals responded to the challenge of negotiating care with various strategies. Patients with sickle cell disease who are frequently admitted to hospital may try to develop long-term relationships with their caregivers, become passive or aggressive in their interactions with health professionals, or regularly attend different hospitals. Those who usually manage their pain at home expressed a strong sense of responsibility for the management of their pain and advocated self-education, assertiveness, and resistance as strategies toward hospital services.

The organization and delivery of management for the pain of a sickle cell crisis discourages self-reliance and encourages hospital dependence. Models of care should recognize the chronic nature of sickle cell disorders and give priority to patients' involvement in their care.