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

Objective To investigate how sociocultural factors influence management of pain from sickle cell disease by comparing the experiences of those who usu ally manage their pain at home with those who are more frequently admitted to hospital for management of their pain. Design Qualitative analysis of semistructured individual interviews and foc us group discussions. Participants 57 participants with genotype SS or S/beta-thal (44 subjects) or SC (9) (4 were unknown). 40 participants took part in focus groups, six took part in both focus groups and interviews, and nine were interviewed on ly. Participants were allocated to focus groups according to number of hosp ital admissions for painful crisis management during the precious year, eth nic origin, and sex. Results The relation between patients with sickle cell disease and hospital services is one of several major non-clinical dimensions shaping experienc es of pain management and behaviour for seeking health care. Experiences of hospital care show a range of interrelated themes, which are common to mos t participants across variables of sex, ethnicity, and hospital attended: m istrust of patients with sickle cell disease; stigmatisation; excessive con trol (including both over- and undertreatment of pain); and neglect Individ uals respond to the challenge of negotiating care with various strategies. Patients with sickle cell disease who are frequently admitted to hospital m ay try to develop long term relationships with their carers, may become pas sive or aggressive in their interactions with health professionals, or may regularly attend different hospitals. Those individuals who usually manage their pain at home express a strong sense of self responsibility for their management of pain and advocate self education, assertiveness, and resistan ce as strategies towards hospital services. Conclusions The current organisation and delivery of management of pain for sickle cell crisis discourage self reliance and encourage hospital depende nce. Models of care should recognise the chronic nature of sickle cell diso rders and prioritise patients' involvement in their care.