Communication with children about sickle cell disease: A qualitative study of parent experience.

OBJECTIVES: This study aimed to explore how parents communicate with children affected by sickle cell disease, a condition associated with social and cultural complexities that pose risks to open parent-child communication.

DESIGN: A contextualist approach informed the qualitative exploration of parent experience using an individual interview design.

METHODS: Twelve semi-structured interviews were conducted with parents whose child had a diagnosis of sickle cell disease. Interviews were audio-recorded, transcribed verbatim, and analysed using inductive thematic analysis.

RESULTS: Parental communication was aimed at educating and protecting children from the physical and emotional effects of SCD in an age appropriate way. Parents commonly described avoidant communication and a small number described using this as a more predominant approach. This appeared to relate to fears about SCD, stigma, and uncertainty about how to best to respond.

CONCLUSIONS: As a known mediator of child outcomes, communication offers a promising target for intervention. The findings of this study suggest that parents of children with SCD are likely to benefit from formal support to adapt their communication to their child's needs. Parenting interventions should, in future, include the SCD parent population as a specific group to benefit child outcomes. Statement of contribution What is already known on this subject? Talking openly with children who have genetic conditions is known to promote acceptance and adjustment to illness. Sickle cell disease (SCD) is a genetic condition that is surrounded by various sociocultural issues that may act as barriers to parent-child communication. For example, it is condition that affects only Black and Minority Ethnic (BME) groups and is associated with longstanding stigma within BME communities due to the hereditary nature of the disease. What does this study add? It adds a unique focus on communication in the SCD parent population (previous work has tended to study this group alongside parents of various other genetic conditions). The findings provide a rich insight into parent experience of communication with children about SCD. It reveals that many parents find it difficult to talk openly with children and often avoid sensitive issues such as inheritance, physical limitations, and risk of death which has important implications for child coping and adjustment. It is therefore recommended that health care services are designed to support parents with communication about SCD with their child.