The purpose of this action-oriented needs assessment was to ascertain the knowledge, motivation, and culture (KMC) needs of Blacks regarding joining the Be The Match bone marrow registry and participating in the bone marrow donation process. This needs assessment will be utilized to lay the foundation for an educational and research based nonprofit organization, Angels In Disguise, that I developed. This study will also be used to inform the bone marrow registry of the KMC needs of the Blacks who participated in this study. The data collection came from nine observations, four post-observation surveys, five donor interviews, two prototype development groups, and a prototype field test. The formative results from the data collection partially aligned with the literature, which showed that a lack of knowledge resulted in Blacks not joining the Registry. An outlier materialized from the formative data, indicating that all five donor interviewees had joined the bone marrow registry without having knowledge of it, its processes, or the critical need for Blacks to join. On the other hand, the formative data supported the literature when the donor interviewees became a bone marrow match and were faced with the decision to move forward with the bone marrow donation process. All five donor interviewees sought and obtained knowledge about the bone marrow registry prior to being able to move forward with the donation process. In contrast, the formative data around motivation fully aligned with the literature. Blacks who lacked motivation do not join the bone marrow registry or participate in the bone marrow donation process, whereas the literature stated that many Blacks do not join the bone marrow registry due to cultural attitudes and beliefs. Research indicates that the Black community distrusts the medical community due to their being used as medical guinea pigs in the past. Also, Blacks fear pain and their health being compromised due to bone marrow donation. Interestingly, the formative data results did not support or show a lack of support of the literature. Cultural attributes and beliefs did not manifest themselves in the formative data results. The two prototype development groups participated in design thinking utilizing iterative brainstorming exercises, rapid prototyping, and assumption testing. The prototype development groups analyzed the data by categorizing and coding the data into themes through participatory research and collaborative analysis. The results of the two prototype development groups culminated into a final prototype. The final prototype was aimed at addressing the KMC needs of the Black participants, which were two-fold. First, the Registry needs to build a relationship with the Black community. Second, participants required knowledge about the Registry, the matching and donation processes, and the critical need for Blacks to join the Registry and participate in the donation process be provided to them in an educational setting, a symposium. The final prototype culminated into a bone marrow symposium that was tested in the field. The final prototype consisted of three videos about the bone marrow registry, a panel discussion with three Black bone marrow donors who had donated to non-relatives, and a pre- and post-prototype field test survey. The summative findings of this study were the results of the pre- and post-prototype field test surveys and post prototype field test. The findings of the pre-prototype field test survey, regarding knowledge, indicate the participants knew nothing or very little about the bone marrow registry. After being exposed to the prototype, the participants indicated in the post-prototype field test survey they had learned by joining the bone marrow registry they could possibly save a life. They also indicated they did not need any additional information about the bone marrow registry in order to make a decision to join and participate in the bone marrow donation process. Regarding motivation, there was not much change between the pre- and post-prototype field test survey results. The participants had indicated in both the pre- and post-prototype field test surveys that they would be motivated to join the bone marrow registry and participate in the bone marrow donation process if it could save a life. With regard to culture, the participants indicated in both the pre- and post-prototype field test surveys that no beliefs would affect their decision to join the registry and participate in the bone marrow donation process.

The human leukocyte antigen (HLA) is the most polymorphic region in the human genome and accounts for more than 10% of human diversity. This region plays an important role in matching donors and recipients for transplantation. The South African Bone Marrow Registry (SABMR) does not reflect the demographics of the South African population. The large number of polymorphisms resulting from HLA diversity in the Black South African population and their limited representation in the SABMR reduce the chances of finding adequate matches between donors and recipients in this group. Umbilical cord blood is an alternative to bone marrow for the treatment of fatal diseases. Less strict HLA matching is required due to the naive nature of the T cells in cord blood. A public umbilical cord blood bank is a necessity in trying to cater for the diverse population in South Africa. However, the ethnic diversity of the South African population poses a great challenge in constituting a public umbilical cord blood bank that is representative of the entire population. The Roche designed next generation sequencing (NGS) high resolution (HR) HLA typing kit enables sequencing of additional HLA exons and could improve the degree of matching between individuals to ultimately decrease adverse reactions. An extensive study of the literature was performed to establish the demographics, linguistics, and HLA diversity of the South African population to determine how a public cord blood bank should be constituted. In addition, HLA genotyping was performed by 454 NGS on 20 samples that had previously been HLA typed by conventional methods. The 454 NGS technique made use of a Roche designed medium and high resolution HLA typing kit to genotype the samples. It was possible to assign accurate genotypes to 95.5% of the loci of interest for the total number of 20 samples using the MR kit, compared with 98.5% using the HR kit. In conclusion, the present study indicates the extreme HLA diversity in the South African population, and therefore, recommends constituting the first public umbilical cord blood bank in Gauteng on the basis of race or major ethnic groupings. A minimum number of 10 000 cord blood units is needed to initiate the bank. Furthermore, the 454 NGS platform together with the HR HLA typing kit display potential as an alternative method to be used in a public cord blood bank, as well as routine clinical and diagnostic laboratories, to ultimately improve HLA matching between donors and recipients. / Dissertation (MSc)--University of Pretoria, 2013. / gm2014 / Immunology / unrestricted