Table 4. Critical Incidents – Positive and Negative Effects of Sickle Cell Disease.
| Category | Number of Incidents (%) | Sample Statements |
|---|---|---|
| Positive Effects | ||
| Impact on Family and Relationships | 15 (18.5 %) | |
| Family Cohesion | …the parents managed the child together…the siblings also help… it brought the family together | |
| Pride in Accomplishments | I told her (when she was accepted for senior high school) “we are going to inspire them…even with SCD you can do anything.” | |
| Improved Intelligence/Scholarship | 9 (11 %) | …she spent more time at home and studying, leading to academic achievement |
| Advocacy | 4 (5 %) | …they know how to manage their child's condition… and now they give advice to other people |
| Negative Effects | ||
| Impact on Family and Relationships | 21 (26 %) | There was this couple…both were SS. They got married and their first child had to go to the hospital every moment. Eventually the couple got tired of the marriage and the child expired |
| Psychosocial Aspects | 12 (15 %) | (After the deaths of two children with SCD) they are now left with one child with SCD. They are still mourning their children… they don't have the joy they had. |
| Socioeconomics/Resources | 7 (9 %) | The parents are out of work to take care of their child. The person (with SCD) was sick most of the time and not able to work |
| Misconceptions | 5 (6 %) | …she had her first menarche at 24 or 25… she was told it was not possible for her to give birth They are told “you don't live above 25 years” if you have SCD |
| Clinical Complications | 3 (4 %) | …she had joint pain and inflammation |
| Stigma | 2 (2.5 %) | …the family prevented her fiancé from marrying her …they put the blame on the woman, said SCD is from the maternal family |
| Curse/Punishment | 1 (1 %) | …they thought witchcraft was upon them |
a
Themes presented in order of prevalence