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Background: Sub-Saharan Africa is increasingly being challenged in providing care and treatment for chronic diseases, both communicable and non-communicable. In order to address the challenges of linkage to and retention in chronic disease management, there is the need to understand the factors that can influence engagement in care. We conducted a qualitative study to identify barriers and facilitators to linkage and retention in chronic care for HIV, tuberculosis (TB) and Hypertension (HTN) as part of the Academic Model Providing Access to Healthcare (AMPATH) program in western Kenya. Methods: In-depth interviews and focus group discussions were conducted July 2012-August 2013. Study participants were purposively sampled from three AMPATH clinics and included patients within the AMPATH program receiving HIV, TB, and HTN care, as well as caregivers of children with HIV, community leaders, and healthcare providers. A set of interview guides were developed to explore perceived barriers and facilitators to chronic disease management, particularly related to linkage to and retention in HIV, TB and HTN care. Data were coded and various themes were identified. We organized the concepts and themes generated using the Andersen-Newman Framework of Health Services Utilization. Results: A total of 235 participants including 110 individuals living with HIV (n = 50), TB (n = 39), or HTN (n = 21); 24 caregivers; 10 community leaders; and 62 healthcare providers participated. Barriers and facilitators were categorized as predisposing characteristics, enabling resources and need factors. Many of the facilitators and barriers reported in this study were consistently reported across disease categories including personal drive, patient-provider relationships and the need for social and peer support. Conclusions: Our findings provide insight into the individual as well as broader structural factors that can deter or encourage linkage and retention that are relevant across communicable and non-communicable chronic diseases. The findings of the present study suggest that interventions should consider the logistical aspects of accessing care in addition to predisposing and need factors that may affect an individuals’ decision to seek out and remain in appropriate care.
The AMPATH program, headquartered in Eldoret, Kenya (about 350 km north-west of Nairobi) was initiated in 2001 as a joint partnership between Moi University School of Medicine, Moi Teaching and Referral Hospital (MTRH) [26, 27], and a consortium of North American universities led by Indiana University (IU) School of Medicine. The history, organizational structure, and health programs of AMPATH have been described elsewhere [28]. AMPATH provides technical support, mentorship and training to Kenyan medical faculty and staff with the aim of developing healthcare services in Kenya. AMPATH delivers care, provides education, and performs research in networks of urban and rural Ministry of Health hospitals, health centers, and dispensaries in western Kenya. AMPATH currently follows >85,000 HIV-positive patients in 22 sub-counties of 8 counties in western Kenya. All HIV and TB-related care and treatment are free at the point of service for patients. Patients are managed according to National Kenyan protocols, which are consistent with WHO guidelines. While AMPATH initially focused on patients infected with HIV, it has since expanded to provide maternal and child health services and chronic disease management, including diabetes and hypertension, to a catchment population of over 2 million persons [29, 30]. This study was undertaken in three AMPATH sites, namely Turbo, Teso, and Chulaimbo (Fig. 1). Map of Study Sites: This figure presents a map of all AMPATH sites in western Kenya and specifically highlights the three study sites: Chulaimbo, Teso and Turbo In order to gain additional perspectives on challenges to linkage and retention in care, we sought to include a broad range of participants including patients, community members and healthcare providers. More specifically, this study targeted patients within the AMPATH program including patients receiving HIV, TB, and hypertension care, as well as caregivers of children with HIV, community leaders (religious leaders, traditional healers, village elders, assistant chiefs), community health workers (CHWs), para-clinical staff (Nutritionist, Psychosocial, Outreach, Social work teams) and healthcare providers (nurses, clinical officers, medical officers). This was an exploratory qualitative study conducted between July 2012 and August 2013. Study participants were purposively sampled from three ethnically and geographically diverse AMPATH sites. In-depth interviews (n = 16) and focus group discussions (FGDs, n = 26) were used to collect data (See Table 1). The number of data collections was predetermined based on conventional guidelines that each sub-population of the study had a minimum of two sessions. Theoretical saturation was assumed based on the number of sessions completed per population. FGDs were held separately for each participant group and for men and women among patient groups with the exception of HTN and TB FGD which were mixed in Teso. A set of interview guides were developed to explore perceived barriers and facilitators to chronic disease management particularly for linkage and retention to HIV, TB and HTN care (See attached guides). Specific questions were asked about barriers and facilitators to linkage versus those related to retention and individually for each chronic disease of interest. In addition, basic socio-demographic information of age, gender, educational level and occupation was collected. Trained research assistants identified the target groups at AMPATH health facilities and informed them about the study. Health facility in-charges assisted with contacting the participants. Data collection was conducted by members of the research team at the Social Behavioral Team within AMPATH. While some respondents (e.g., AMPATH staff) knew of some members of the research team and understood that there was a need to inform the care program particularly related to chronic disease management, given the physical distance between AMPATH headquarters and the three rural sites, there was no prior relationship between participants and the researchers. The interview sessions and FGDs took approximately 1 h and were conducted in English, Swahili, Kalenjin, or Luo. All sessions were audio recorded and for the FGDs, scribes also took notes on session proceedings. At the end of each session participants were provided with transport reimbursement of 200 Kenyan Shillings (approximately $2.50 US). This research was program driven and was situated within the broader AMPATH Care Program with the goal of improving linkage and retention of patients within existing clinics. It was considered a low-risk rapid appraisal. Verbal consent was obtained prior to beginning data collection and again prior to commencing audio recording. While consent forms were not used, transcripts from the FGDs and in-depth interviews demonstrate agreement and consent to proceed with the data collection. For patients participating in FGD, they did not have to disclose the chronic disease status given that most participants knew each other’s conditions for they were recruited from specialty clinics that were caring for specific conditions. FGD were utilized only for patient groups as they were considered a more homogenous group. In-depth interviews were held with community leaders and provider groups only as they were considered a more heterogeneous group that was purposely selected based on their unique and comprehensive knowledge on the topics relevant for the present study. Finally, it is worth noting that his study was situated within a larger AMPATH Program protocol. Note that ethical approval for this study was obtained through an amendment of a larger AMPATH Program protocol that received ethical approval from the Institutional Research and Ethics Committee (IREC) of Moi University College of Health Sciences and Moi Teaching and Referral Hospital as well as the Indiana University Institutional Review Board (IRB). Participant Characteristics* *PLWHA People Living With HIV/AIDS, HTN Hypertensive Patients, TB TB Patients, Caregiver for children living with HIV, CHWSCommunity Health Workers, Safety Nets includes nutritionists, outreach workers, social workers, psychosocial workers; HCP = Healthcare providers including clinical officers, nurses, pharmacists and lab technicians Recorded interviews and FGDs were transcribed and translated to English. The data were then coded and themes related to barriers and facilitators to HIV, TB and HTN linkage and retention were identified. Inductive and deductive data analysis approaches were used. Ideas from different interviews were pooled together and integrated into common themes. Concepts from these themes were generated and we used a conceptual model based on the Andersen-Newman Framework of Health Services Utilization to organize the presentation of the results. In the Andersen Newman Framework (Fig. 1), an individual’s access to and use of healthcare is a function of three main factors: 1) Predisposing Characteristics (socio-cultural characteristics of individuals that exist prior to their illness); 2) Enabling Resources (the logistical aspects of obtaining care, which can include personal, family and community resources); and 3) Need Factors (the most immediate cause of healthcare use from problems that generate the need for care) [31]. For validation, independent coding and identification of themes were conducted by five investigators. We started with a codebook that had a priori codes that were derived from the original question guide. The 5 investigators (VN, JW, RK, JO, BK), all women, worked independently to identify emerging inductive codes that were then added to the codebook as necessary although data was also interpreted based on pre-existing knowledge about the context, the study objectives and the identified themes. Training relating to qualitative data analysis including coding and thematic analysis was also provided. As well, all investigators involved in coding and interpretation had extensive experience in qualitative research methods. Of the investigators involved in coding and analysis, two have PhDs (1 in Sociology and 1 in Human Behavior) and three have Bachelor’s degree (2 in sociology and 1 in nutrition). The original codebook was created in unison (all 5 investigators were involved). The number of interviews were divided evenly among the 5 investigators. Each coder highlighted area of discrepancies and then met as a group to harmonize a response. Note that no software was used. The final write up consisted of summaries, interpretations and textual excerpts.
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