A “health party” intervention on genetic testing for breast and ovarian cancer among Black African women in Luton

Abstract

Background: Evidence suggests that although Black African women have the lowest incidence of breast and ovarian cancer, they have the highest mortality rate and low rates of uptake for healthcare services and cancer screening services for these conditions in the UK. This demonstrates the importance of developing an intervention to enable Black African women to pursue genetic testing and make informed choices if found to be eligible. Therefore, the aim of this thesis is to develop and evaluate the feasibility, acceptability, and fidelity of a designed intervention and assess changes in the knowledge, awareness, and uptake of genetic testing for breast and ovarian cancer amongst Black African women in Luton. Methods: Based on the findings of the literature review, the qualitative study, the health belief model theoretical framework and in correlation with the findings of the systematic review, a "Health Party" intervention was developed. The “Health Party” intervention included an educational session in a party setting conducted virtually. The Medical Research Council’s guidelines for developing complex interventions were also used as a framework for the development of the intervention. The feasibility of the intervention was conducted to assess the recruitment and data collection rates. Focus group discussions were conducted amongst the participants and the moderators to assess the acceptability and the fidelity of the intervention. Additionally, surveys conducted amongst the participants and the moderators were also used to assess the fidelity of the intervention. Lastly, data was collected prior the intervention, 2-3hrs and 6 months post intervention to assess changes in the knowledge, awareness and uptake of genetic testing for breast and ovarian cancer. Results: The findings showed recruitment rates of 40% and 34% and a data collection rate of 87.9%, suggesting that the intervention was feasible. Results from the surveys and the focus group discussions amongst the participants and the moderators suggest that the intervention was found to be both acceptable and feasible. High fidelity of training, receipt, and delivery (98%) were revealed by the data obtained from the surveys and the focus group discussions. Knowledge of genetic testing amongst the participants increased from 42.6% (prior to the intervention) to 80.9% (2-3hrs post-intervention), and from 80.9% to 81.9% (6 months post-intervention). P-values of less than 0.05 were obtained from the findings of the Wilcoxon signed rank test on knowledge which also showed a significant increase. Awareness of genetic testing increased from 11.8% (prior to the intervention) to 100% (2-3hrs post-intervention), a figure that remained at 100% 6 months after the intervention. The intention to uptake genetic testing increased from 0% (prior to the intervention) to 100% (2-3hrs post intervention) amongst eligible participants whilst the uptake of genetic testing was of 100% 6-month post-intervention. The intention to uptake genetic testing increased from 0% (prior to the intervention) to 93.6 % (2-3hrs post-intervention) and remained at 93.6% 6-month post-intervention amongst non-eligible participants. Conclusion: The findings reveal that a “Health Party” intervention is feasible, acceptable and increases the knowledge, awareness, and uptake of genetic testing for breast and ovarian cancer amongst eligible Black African women. The barriers and facilitators identified can also enable policy makers and healthcare services alike to gain a better understanding of the factors influencing Black African women’s help-seeking behaviours towards genetic testing services. Recommendations were also identified to inform a future trial.