Table 1

Sickle cell focus groups: summary of findings

ChildrenParentsAdults
Access to servicesConcern about transition from paediatric to adult services among older children
  • Concerns about transition from paediatric to adult services

  • Poor experience in A&E due to staff not understanding condition

  • Variable access to psychological support

  • GPs usually bypassed as often they did not know enough about SCD

Living with SCD
  • Feeling different from peers

  • Missing out on things

  • Anxiety about their condition and how it will manifest itself

  • Concerns about falling behind due to missed school

  • Fatigue and pain limit participation in sports

  • Trying to give their children as normal a life as possible, trying to avoid passing on their own anxieties

  • Guilt about passing the affected gene

  • Feeling daunted about making decisions for their children

  • Relentlessness of the situation may lead to depression

  • Stigma associated with condition

  • Isolation

  • Depression

  • Feelings of failure

  • Difficulty in communicating with others about how it feels to have SCD

  • Employers intolerant of absences from work due to painful crises

  • Difficulty to plan leisure activities due to unpredictability of the condition

  • Difficulty in forming relationships due to perceived stigma around SCD

Information and support
  • Children often do their own internet search about their own condition

  • Older children feel that having their condition explained to them makes it easier for them to cope with diagnosis

  • More lifestyle advice is welcome

  • Need for widening awareness of SCD among the public

  • Parents can find it alarming to use the internet as a source of information about SCD

  • More lifestyle advice is welcome

  • Need for widening awareness of SCD among the public

  • Cartoons and videos of people with SCD explaining their condition was welcome

  • More lifestyle advice is welcome

  • Need for widening awareness of SCD among the public

  • Adult patients rejected social media sites to receive information

  • However, cartoons and videos of people with SCD explaining their condition were welcome

  • A&E, Accident and Emergency; GP, general practitioner; SCD, sickle cell disease.