Objectives: Sickle cell disease (SCD) is an inherited blood disorder characterized by recurrent `crisis' pain, which is the most common reason for repeated hospital admission. The nature of this pain, however, is poorly understood, and the pain is often sub-optimally managed.
Methods: A focus group format, interpreted using thematic analysis, was used to gain a greater understanding of the barriers that SCD patients face in managing their pain and their perceptions of the treatment that they receive from healthcare professionals.
Results: Key issues emerging from the focus groups that adversely affected participants' pain management included: feeling isolated by their experience of `crisis' pain, not being listened to, and limitations to social support networks. Specific issues relating to seeking medical care included lack of understanding about SCD by non-specialist clinicians, feelings of being low priority due to the `invisible' nature of their pain, and feeling mistrusted by medical staff when seeking analgesia.
Discussion: Feelings of isolation may drive maladaptive coping strategies and manifest in anger, aggression and active avoidance of service use. Suggested service improvements include the active targeting of isolated individuals in the form of pain discussion groups or self-help groups, and greater provision of specialised services.
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