Exploring Family Communication About Sickle Cell Disease in Adolescence

Abstract

Sickle cell disease (SCD) is a lifelong disorder that involves progressive organ damage and requires ongoing medical attention to prevent and treat episodic acute complications. Children with SCD need ongoing monitoring and extra attention that may be stressful to family members. Communication within families can help resolve family stress and may be associated with medical follow-up and management of SCD. Focus groups were conducted with 12 African American families to explore the communication that occurred within and outside of the family from the perspectives of adolescents with SCD, siblings, and parents. Factors that influence family communication were explored. The extended family was an important social network and resource to adolescents, siblings, and parents. Family member knowledge of SCD was an important factor that influenced communication about SCD; adolescents and parents communicated more easily than siblings and also reported having more knowledge of SCD than siblings. Future research focusing on the knowledge of immediate and extended family members and their recognition of their contribution to the child with SCD is recommended.

Communication between parents and well‐siblings in the context of living with a child with a life‐threatening or life‐limiting condition

“…22 There is evidence that well-siblings commonly have limited understanding about their brother's or sister's illness or chronic medical condition. [23][24][25] Parents sometimes perceive that well-siblings have a better understanding of the disease than what is actually the case, 26 with the level of information being provided by parents to children often not meeting the well-sibling's desire to know more. 25,27,28 Well-siblings who observe changes in their brother's or sister's condition or in their medical interventions benefit from clear, age-appropriate explanations so that they can make sense of the situation.…”

“…26,29 Open, problem-focussed familial communication patterns have generally been found to be associated with better psychosocial functioning among siblings who have a brother or sister with a disability 30 or sickle-cell disease. 26 Parents may have complex reasons for not sharing all information with well-siblings, which may include not wanting to distress them, thinking the well-sibling too young to understand, 26 not wanting to involve the well-sibling in the medical issues, 27 finding it too difficult to discuss the issues with the well-sibling or not understanding the issues well enough themselves. 26,27 Providing parents with greater support and guidance with respect to well-sibling information provision may help address some of these issues.…”

“…40 During adolescence, children may increasingly turn to their peers for this support; however, parents commonly still provide support and encouragement in various ways. 26 Children whose families are pre-occupied with issues related to a sick child may find that they have more problems and stressors in other life areas, as things are more easily over-looked. For example, homework might not get completed, well-siblings may forget about class tests, excursion notes might not get returned in time and well-siblings may not be able to attend social activities.…”

Priapism Among Male Adolescents with Sickle Cell Disease

“…Information provided in the study may prompt doctors to view priapism from the patient's perspective (Graff et al, 2012) and to devote more energy to developing supportive relationships with SCD and priapism patients and their families. Medical practitioners may also realize that they are in a position to offer appropriate counseling to this patient population (Khattab, Rawlings, & Ali, 2006).…”

“…According to Telfair and Gardner (1999), adolescents with priapism who perceive that they have a supportive environment in the management of the complication tend to experience more positive biopsychosocial outcomes, evaluated through reported cases of physical and psychological functioning. Graff et al (2012) examined the impact of family communication on the general welfare of adolescents with SCD and priapism, concluding that extended family can provide a critical network and resources for such adolescents.…”