Self‐management recommendations for sickle cell disease: A Ghanaian health professionals' perspective

Abstract

ObjectiveTo describe self‐management recommendations for sickle cell disease (SCD) care among health professionals who manage SCD in Ghana.MethodNine health care professionals (nurses, doctors, and physician assistants) who work in SCD were interviewed. The semistructured interviews were recorded, transcribed, and analysed using the qualitative content analysis method. Self‐management recommendations were conceptualised as preventive health, self‐monitoring, self‐diagnosis, self‐treatment, and self‐evaluation.ResultsPreventive health recommendations were the commonest, where the professionals described similar topics including avoidance of cold temperature, frequent oral hydration, and healthy nutrition. Self‐monitoring recommendations included regular checks for pallor, urine colour, and splenic enlargement. Self‐diagnosis recommendations were captured as warning signs and included pain, fever, unusual feelings, and enlarged spleen. Pain and fever management were the focus of most self‐treatment advice, and there were some self‐treatment recommendations for dactylitis, anaemia, and priapism. There was considerable variation in the strategies recommended for the management of individual SCD‐related problems.ConclusionGhanaian health professionals involved in SCD care provide limited and inconsistent self‐management recommendations. There is a need for the development of SCD standards and guidelines that support effective self‐management. Health professionals working in SCD require continuing education in self‐management.

Self-management for sickle cell disease among patients and parents: A qualitative study

“…The findings among the children have not been previously described but could be influenced by what health professionals teach them as the findings parallel health professionals’ recommendations in our previous publication. 39 The findings among the adults are similar to findings among adults in the US study where the participants described “self-awareness” or “listening to and learning about the body” as the major strategies for self-monitoring. 32,33,40…”

“…The findings among the children have not been previously described but could be influenced by what health professionals teach them as the findings parallel health professionals' recommendations in our previous publication. 39 The findings among the adults are similar to findings among adults in the US study where the participants described "self-awareness" or "listening to and learning about the body" as the major strategies for self-monitoring. 32,33,40 The findings further revealed that whereas the parents consciously conducted the mentioned self-monitoring actions such as urine and eye colour checks, the adults selfmonitoring and diagnosis actions occurred as automatic unconscious responses to changes in health status.…”

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“…Managing pain associated with diarrhea or sickle cell crises is important. [ 10 , 11 ] Appropriate pain medications and pain management strategies should be part of the treatment plan.…”

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“…The life expectancy in SCD is generally decreased (possibly 20 -30 years) in comparison with undiseased persons, nonetheless, loans in treatment are extending survival. The consequences for utmost cases are protected and SC crises frequently need readmissions to the hospice [10].…”