Chronic disease self-care programs among young people in Uganda

University of Michigan investigator(s) and unit: Massy Mutumba, Health Behavior and Biological Sciences, School of Nursing

International colleague(s) and unit: Joseph Mwizera, Aga Khan University School of Nursing, Uganda 

Purpose:

To conduct research and develop interventions to support self-management of chronic diseases among young people (aged 10 – 24) in Uganda. 

Rationale: The health of young people in low-income countries has been largely neglected in global public health due to the perception that this age group is healthy. However, current data indicate a large burden of both communicable and non-communicable diseases among adolescents and young adults. Globally, the leading chronic disorders among adolescents and youth are neuropsychiatric conditions (45%), unintentional injuries (12%) and infectious or parasitic diseases (10%). Sub-Saharan African countries have the highest burden of chronic diseases among young people, and this is estimated to be 2.5 times greater than in high-income countries. Adolescents account for over 40% of all new HIV infections globally, and more than two thirds of cases occurring among adolescents are in Sub-Saharan Africa. Anti-retroviral therapy has transformed HIV/AIDS from a life-threatening condition into a chronic disease. It is estimated that over 1.2 million adolescents are currently living with HIV in Sub-Saharan Africa. Globally, the main socio-cultural risk factors underlying young people’s heightened vulnerability to poor health outcomes include alcohol and illicit drug use, unsafe sex, poor diet, and lack of contraception. Contrary to the general perception, there is growing evidence to suggest that young people in Africa are not as healthy as previously thought.  There is clearly a need for public health interventions to promote the health and wellbeing of this population. However, opportunities for prevention of disease and injury and promotion of self-care of chronic disease for this age group have not been fully exploited. This project is aimed are identifying, evaluating and developing effective models for disease prevention and self-care of chronic disease among young people in Uganda.

 

Study design and methods:  This project will utilize mixed method research approaches. Qualitative (in-depth interviews, focus group discussions) will be conducted with young people, their caregiver and healthcare providers (doctors, nurses, social workers, counselors) to identify their knowledge, experiences, challenges, preferences and resources related to promotion of health and wellbeing among young people. The study will target young people with a range of chronic diseases, both communicable and non-communicable (e.g. sickle cell anemia, mental health problems including drug and substance abuse, HIV/AIDS, asthma, diabetes, cancer) with the goal of assessing personal preferences, socio-cultural attitudes and values related to chronic illness among young people; institutional and societal resources to support chronic disease management among young people. These interactions will be audio-taped, transcribed and analyzed (using dedoose®) to identify themes related to existing models and approaches to promotion of health and wellbeing among young people, needs and challenges, resources and opportunities to action. These data will then inform the development of tailored public health interventions to support the health and wellbeing of young people. Developed programs will be  pilot tested for acceptability, efficacy and impact. Given the expanded access to smart phones, cellular network and internet connectivity, we anticipate developing and testing a range of ehealth interventions to promote the health and wellbeing of young people.

Anticipated undergraduate/graduate student activities on project:

Students will participate in the inter-disciplinary research collaboration that involves partnerships with faculty and students at the Aga Khan University School of Nursing in Uganda. Students will participate in research meetings, preparation of IRB applications, and data collection and analysis, and preparation of manuscripts. Graduate students will be able to add sub-projects to collect pilot data that can be used to meet their internship requirements or develop their dissertation topic.

Techniques/methods students should become familiar with in advance: 

Literature review, familiarity with Excel spreadsheet, and good communication skills.

Suggested readings (minimum of 3-5 articles):

 

  1. Toshiko Kaneda, Reshma Naik, and Wendy Baldwin. Noncommunicable Diseases – Risk Factors Among Young People in Africa. Population Reference Bureau. http://www.prb.org/pdf14/ncd-risk-youth-africa.pdf
  2. Dalal, S., Beunza, J. J., Volmink, J., Adebamowo, C., Bajunirwe, F., Njelekela, M., … & Holmes, M. D. (2011). Non-communicable diseases in sub-Saharan Africa: what we know now. International journal of epidemiology, 40(4), 885-901.
  3. Swendeman, D., Ingram, B. L., & Rotheram-Borus, M. J. (2009). Common elements in self-management of HIV and other chronic illnesses: an integrative framework. AIDS care21(10), 1321-1334.
  4. World Health Organization. (2002). Innovative care for chronic conditions: building blocks for actions: global report.
  5. Coleman, K., Austin, B. T., Brach, C., & Wagner, E. H. (2009). Evidence on the chronic care model in the new millennium. Health affairs28(1), 75-85.
  6. Muessig, K. E., Nekkanti, M., Bauermeister, J., Bull, S., & Hightow-Weidman, L. B. (2015). A systematic review of recent smartphone, Internet and Web 2.0 interventions to address the HIV continuum of care. Current HIV/AIDS Reports12(1), 173-190.