Adherence to Self-Care Management of Sickle Cell Disease Among Caregivers

Adherence to Self-Care Management of Sickle Cell Disease Among Caregivers by Muinah Fowora MSc, Olabisi Onabanjo University, 2010 Final Diploma, University of Lagos, 2002 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Public Health Walden University May 2016 Abstract The self-care management of sickle cell disease (SCD) improves mortality rate; however, compliance with SCD self-care management remains a problem. The purpose of this study was to examine the knowledge and factors that influence compliance with SCD self-care management recommendations among caregivers of children with SCD. The health belief model was used as the theoretical foundation of this study, theorizing that caregivers’ perceived susceptibility, severity, and benefits of SCD self-care management will influence compliance. The study used a quantitative research design. A crosssectional survey was administered to 100 caregivers of children with SCD attending sickle cell clinics in Lagos, Nigeria using convenience sampling. Information was obtained from participants using a structured interviewer-administered questionnaire, and data were analyzed using descriptive statistics, bivariate correlations, and binary logistic regression techniques. Findings confirmed a high adherence rate but low knowledge of SCD self-care management among the caregivers of children with SCD. There was no significant correlation between knowledge of SCD self-care management and adherence. However, the findings from the multivariate analysis identified knowledge as a predictor of adherence and religiosity and total number of barriers as barriers to adherence. Parental health beliefs did not influence adherence to SCD self-care management. These findings have social change implications by guiding the work of health educators, health care providers, and public health practitioners to incorporate group counseling on SCD self-care management at every sickle cell clinic.The self-care management of sickle cell disease (SCD) improves mortality rate; however, compliance with SCD self-care management remains a problem. The purpose of this study was to examine the knowledge and factors that influence compliance with SCD self-care management recommendations among caregivers of children with SCD. The health belief model was used as the theoretical foundation of this study, theorizing that caregivers’ perceived susceptibility, severity, and benefits of SCD self-care management will influence compliance. The study used a quantitative research design. A crosssectional survey was administered to 100 caregivers of children with SCD attending sickle cell clinics in Lagos, Nigeria using convenience sampling. Information was obtained from participants using a structured interviewer-administered questionnaire, and data were analyzed using descriptive statistics, bivariate correlations, and binary logistic regression techniques. Findings confirmed a high adherence rate but low knowledge of SCD self-care management among the caregivers of children with SCD. There was no significant correlation between knowledge of SCD self-care management and adherence. However, the findings from the multivariate analysis identified knowledge as a predictor of adherence and religiosity and total number of barriers as barriers to adherence. Parental health beliefs did not influence adherence to SCD self-care management. These findings have social change implications by guiding the work of health educators, health care providers, and public health practitioners to incorporate group counseling on SCD self-care management at every sickle cell clinic. Adherence to Self-Care Management of Sickle Cell Disease Among Caregivers by Muinah Fowora MSc, Olabisi Onabanjo University, 2010 Final Diploma, University of Lagos, 2002 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Public Health Walden University May 2016 Dedication My dad always wanted one of his children to become a medical doctor. Long ago, I promised him that he may not get a child who is a medical doctor, but he will surely get a child who will be called a doctor. This dissertation is dedicated to my daddy as a way to tell him that I kept my promise. I also dedicate this dissertation to every sickle cell disorder patient out there. Remember, you can be whatever you want to be irrespective of your disorder. Acknowledgments This dissertation would not have been easy without the support of many people who contributed in diverse ways. Foremost, I express my gratitude to Almighty Allah whose inspiration, guidance, and protection brought me this far. Many thanks go to my venerable dissertation committee chair, Dr. Vasileios Margaritis, whose useful and necessary advice and prompt attention aided the successful and timely completion of this work. I count myself fortunate to have Dr. VM as a mentor. I am also grateful to my dissertation committee member, Dr. Raymond Thron, and my university research reviewer, Dr. Mary-Lou Gutierrez, for their guidance and feedback on my dissertation. Special thanks and appreciation go to my wonderful husband, Seyi Fowora, for his support, love, and patience. He reminded me of all my deadlines, and he geared me up when I was slacking. The financial and emotional support and care you provided our son and me saw me through my doctoral studies. I am also grateful to my family, especially my dad, who stood by me throughout my studies. I want to thank my friends, Idowu, Rosemary, and Helen, who helped me keep my sanity throughout this dissertation. I acknowledge Mr. Sola of the Sickle Cell Foundation, and Dr. Iwalokun for linking me with the Massey Street Children’s Hospital. I am also extremely grateful to Faustina and Joy for helping me with recruitment and data collection. Finally, I want to acknowledge my friend and dissertation buddy, Myriam Almonor, who stood by me throughout this challenging, emotional journey, and supported me in numerous ways. To every one of you that assisted me in one way or the other, including all those mentioned above, may Allah be with you and bless you all abundantly.