Aimee Latta and Dr. Barbara Mandleco, College of Nursing
Raising children with chronic conditions often is a source of stress on the family unit . While many studies in the past conducted in South Africa have focused on the etiology or disease process itself, the effects of the children’s condition on family adaptation and daily life have frequently been overlooked. Further, out of the estimated 2,100,000 children world wide who are living with HIV/AIDS, 1,900,000 are residing in Sub-Saharan Africa . Due to this escalating number, the effects of children who are living with HIV/AIDS in Sub-Saharan Africa on family life cannot go unnoticed. In addition, by increasing awareness of family adaptation related to the children’s condition health care workers may understand how to improve the care given to families who are raising children with HIV/AIDS.
The purpose of this study was to examine adaptation of South African families raising children with chronic conditions (HIV+) by identifying daily stressors and coping responses of parents and siblings. Participants were mothers and siblings of children with chronic conditions (HIV+). The sample included two Xhosa families who were recruited by snowball sampling methods. Both families consisted of single parent homes in East London, South Africa where mothers were the sole care providers. The average age of siblings was 14 where family A included one 18-year-old female and family B one 10-year-old female. The average age of the children with the chronic condition was 9 with family A having a 12-year-old female and family B having a 6-year-old female. Both children were HIV positive. After the families volunteered to participate in the study, the researcher met with the family in their home where informed consent/assent was obtained and structured interviews with both the mother and sibling were conducted. Interviews comprised of open-ended questions for both parents and siblings in order to identify themes. Follow-up questions were used as needed to clarify. An interpreter was present to facilitate communication. While both mothers and siblings were interviewed only the mothers responses will be discussed here.
On returning from South Africa content analysis was performed to identify themes related to daily stressors and coping responses reported by mothers. Common stressors stated by mothers were clothing, food, and school fees. The mother in family B also indicated medical expenses to be a main source of stress. It is interesting to note that finances was the underlying stressor mentioned by mothers.
Moreover, financial burdens also shaped the way mothers described their coping responses. During interviews both mothers defined their support systems as centering around individuals or organizations who have provided financial support. When asked who had been most helpful in helping meet the family’s needs, the mother in family B related that the government corresponded to this role because of the grant provided the family. Further, the mother in family A reported the individual who was most supportive to her family was a preacher who aided the family with monthly groceries and electricity. The emphasis on financial concerns in both families illustrated the priority of basic needs on family adaptation. Economic needs in this study seemed to overshadow additional stressors and coping responses of raising children who are HIV+.
This project was not without its challenges. One limitation of this study was the use of an interpreter. While the interpreter allowed for communication between researcher and participants, important information may have been lost in the transmission process. In addition, the presence of an interpreter may have prevented the participants from fully disclosing information that may have otherwise been shared if there was not an intermediary person. Another limitation was the difficulty in retaining participants. Four families agreed to participate in the study but frequently cancelled appointments and later withdrew from the study creating a limited sample size.
This study was beneficial in introducing the stressors and coping responses of families raising children who are HIV+; however, further research is indicated. Since both children who were HIV+ in this study were female, perhaps a study comparing the differenced between male and female children would be interesting. In addition, both families in the study were classified as having a low socioeconomic status. By conducting a similar study with families who are in a higher socioeconomic status, the data may yield different results. Other methods may also be implemented such as providing the families with diaries in order for the families to capture daily stressors and coping responses.
Overall, this experience was remarkable. By conducting a small scale research project as an undergraduate student I was able to grasp an enriched understanding and appreciation for research cross-culturally as well as locally. Currently, I am completing my undergraduate degree in nursing and hope to continue onto graduate school in the future.