DOI: 10.5064/f6ce5mrf
title: A qualitative study on the experiences and perspectives of public sector patients in Cape Town in managing the workload of demands of HIV and type 2 diabetes multimorbidity

description: Current South African health policy for chronic disease management proposes integration of chronic services for better outcomes for chronic conditions; that is based on the Integrated Chronic Disease Model (ICDM) [1]. The ICDM argues that optimal clinical outcomes for people living with single or multi-morbid conditions can be achieved through primary healthcare (PHC) re-organisation involving improved clinical management support, clinical practice guidelines for integrated care and the use of community healthcare workers (CHWs) to assist patients with self-management. However, scant data exist on how patients with chronic multimorbidities currently experience the (re)-organisation of health services and what their perceived needs are in order to enhance the management of their conditions. To explore this phenomenon, HIV and type two diabetes (T2D) multimorbidity was used as an illustration of communicable disease and non-communicable disease convergence in the South African health system. This is due to the complexities faced in effective management of the conditions by both healthcare workers and patients [2, 3, 4] and in the Western Cape Province, are ranked to be the top two causes of mortality [5]. 

&lt;h3&gt;Data Collection&lt;/h3&gt;
Purposive sampling was done as participants were drawn from two, public sector clinics - Ubuntu clinic that provides HIV and TB services; and Site B community health clinic provides primary health care for all other diseases, including type two diabetes. These clinics are situated in Khayelitsha, a peri-urban, largely informal township of predominantly black, Xhosa speaking South Africans in Cape Town, Western Cape Province. Inclusion criteria for patient-participants included: having both HIV and T2D multimorbidity; having initiated antiretroviral therapy (ART) and also be on treatment for T2D; be between 35 -65 years old; capable and willing to provide informed consent, and be interviewed in simple English. The inclusion criteria for healthcare worker participants included professionals working with adult chronic patients; willing to communicate in simple English and capable and willing to provide informed consent. Ten patient-participants (five male and five female) and six healthcare workers that included two doctors, two clinical nurse practitioners (CNPs) and two HIV counsellors were recruited. All healthcare workers were from Site B community health clinic, except one CNP from Ubuntu clinic [HIV Clinic]. A mix of phenomenology and grounded theory underpinned the study. Participants took part in in-depth, one-on-one, semi structured interviews that drew subjective lived experiences and perspectives of managing HIV and T2D multimorbidity. Interviews were guided by two separate semi-structured questionnaires - one for patient-participants and another one for healthcare workers. The questionnaires were based on the themes of Shippee’s Complex Cumulative Model (CCM) that explored the concepts of "patient workload" and "patient capacity"[6]. Patient-participants were asked what they had to do to care for their health, the challenges they faced in meeting these demands and the factors that helped them. Healthcare workers were asked how they provided care for patients living with HIV and type two diabetes, the challenges experienced in these cases of multimorbidity; and how they assisted in developing patient capacity. Each interview was face to face, held in confidence in a private room, audio taped and lasted for approximately an hour. A translator was present in each patient-participant interview to provide translation assistance when the participant needed to ask or answer questions in the vernacular. Interviews' transcriptions were done verbatim and in English. 

&lt;h3&gt;Data Analysis&lt;/h3&gt;
NVvivo computer software was used to manage the data. Data analysis was primarily done by RM with assistance from a qualitative research expert (KM). Further discussions with the qualitative research expert enabled RM to be reflexive of assumptions and biases that may have influenced the research process. Thematic content analysis was applied to the transcripts [7, 8]. This involves the researcher becoming familiar with the data through reading the data, reflecting, coding and refining codes. Deductive codes from the CCM were used; together with inductive codes derived from the data. To harmonise data derived from individual interviews, and to ensure inter-coder agreement by the two data analysts, a codebook was also developed [9]. Data from participants were then described and compared. Lastly, data were extracted and explained by in relation to the existing literature. Patient-participants in this study experienced clinic-related workload such as: two separate clinics for HIV and T2D and perceived and experienced power mismatch between patients and healthcare workers. Self-care related workloads were largely around nutritional requirements, pill burden, and stigma. Burden of these demands varied in difficulty among patient-participants due to capacity factors such as positive attitudes, optimal health literacy, social support and availability of economic resources. Strategies mentioned by participants for improved continuity of care and self-management of multi-morbidities included integration of chronic healthcare services, consolidated guidelines for healthcare workers, educational materials for patients, improved information systems and income for patients. 

&lt;h3&gt;References&lt;/h3&gt; 
&lt;p&gt;1. Mahomed OH, Asmall S, Freeman M. An integrated chronic disease management model: a diagonal approach to health system strengthening in South Africa. Journal of health care for the poor and underserved. 2014;25(4):1723-9. 
&lt;/p&gt;&lt;p&gt;
2. Goedecke JH, Micklesfield LK, Levitt NS, Lambert EV, West S, Maartens G, Dave JA: Effect of different antiretroviral drug regimens on body fat distribution of HIV-infected South African women. AIDS research and human retroviruses 2013, 29(3):557-563. 
&lt;/p&gt;&lt;p&gt;
3. Haque M, Navsa M, Emerson SH, Dennison CR, Levitt NS: Barriers to initiating insulin therapy in patients with type 2 diabetes mellitus in public-sector primary health care centres in Cape Town. Journal of Endocrinology, Metabolism and Diabetes of South Africa 2005, 10(3):94-99. &lt;/p&gt;&lt;p&gt;
4. Kerr EA, Heisler M, Krein SL, Kabeto M, Langa KM, Weir D, Piette JD: Beyond comorbidity counts: how do comorbidity type and severity influence diabetes patients’ treatment priorities and self-management? Journal of General Internal Medicine 2007, 22(12):1635-1640. 
&lt;/p&gt;&lt;p&gt;5. StatsSA: Mortality and causes of death in South Africa, 2014: Findings from death notification. In. Pretoria: Statistics South Africa; 2015. 
&lt;/p&gt;&lt;p&gt;6. Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012;65(10):1041-51. 
&lt;/p&gt;&lt;p&gt;7. Green J, Thorogood N. Qualitative Methods for Health Research: SAGE Publications; 2013. 
&lt;/p&gt;&lt;p&gt;8. Bazeley P. Qualitative Data Analysis: Practical Strategies: SAGE Publications; 2013. 
&lt;/p&gt;&lt;p&gt;9. Hennink M, Hutter I, Bailey A. Qualitative research methods: Sage; 2010.
description: NVivo, null
description: Additional Data Collection Details
Participants were drawn from two, public sector clinics - Ubuntu clinic that provides HIV and TB services; and Site B community health clinic provides primary health care for all other diseases, including type two diabetes. These clinics are situated in Khayelitsha, a peri-urban, largely informal township of predominantly black, Xhosa speaking South Africans in Cape Town, Western Cape Province. Eligibility criteria for inclusion into the study included: patients with both HIV and T2D multimorbidity; having initiated antiretroviral therapy (ART) and also be on treatment for T2D; and between 35 and 65 years (those below 35 years have a higher chance of having type 1 diabetes and those above 65 are the least affected in this setting). Healthcare workers had to be working with adult patients with chronic multimorbidities. Additionally, all participants had to be capable and willing to: provide verbal and written informed consent; and communicate in simple English. Due to the exploratory nature of the study and limited budget, the total number of participants enrolled for the study between July and August 2015 were ten patient-participants and six healthcare workers (N=16). Fourteen patients were approached and ten provided consent; whilst nine healthcare workers were approached and six agreed to participate in the study. Equal numbers of males and females were recruited among patient-participants. Healthcare workers included two doctors from the general clinic, two clinical nurse practitioners (CNPs) (one from the general clinic and one from the HIV clinic) and two HIV counsellors (from HIV clinic). There were no available doctors from the HIV clinic during the period of recruitment. Each interview was face to face, held in confidence in a private room, audio taped and lasted for approximately an hour. A translator was present in each patient-participant interview to provide translation assistance when the participant needed to ask or answer questions in the vernacular. Interviews' transcriptions were done verbatim and in English. Field notes after every interview to identify areas that may need further probing with subsequent interviews.

Participant Consent and Ethics Approval
Interviews were conducted with patient-participants living with HIV and type two diabetes; and healthcare workers who provide healthcare services to patients with these chronic conditions. All participants gave their consent for data to be used for publication purposes (information sheet included as study documentation). All personal identifiers were removed from the transcripts.

Ethics approval for the study was granted by the Western Cape Department of Health and the Human Research Ethics Committee of the University of Cape Town (HREC Ref: 314/2015). To maintain confidentiality and to anonymise identity of the participants, unique identifiers were used in transcriptions and reporting research findings.