This qualitative study was carried out in western Kenya to gather community input on a proposed integrated HIT and peer-based support strategy to improve hypertension referral adherence and blood pressure control in the region. Overall, participants were accepting and interested in the strategy, and saw opportunities to address key challenges to referral adherence.
We chose to use the demand versus supply side broad classification as prior literature highlighted barriers to access and utilization of healthcare services can either be viewed and addressed from the patient side (user) or the health system side (supplier) (28, 29). Demand side barriers included the direct and opportunity costs incurred by patients in completing referrals, concerns of service unavailability either because of lack of adequate healthcare personnel, or available personnel not being able to provide the desired quality of service, and finally, a lack of awareness about how the referral system works. On the supply side, long distance and/or inadequate transport infrastructure to the referral facility, as well as ineffective communication between the referring and receiving facility have been identified as key barriers to effective referral systems.
Our study corroborated prior literature while identifying new themes. First, cost-related factors are dominant barriers to referral completion and were reported uniformly by all participant groups. This highlights a need for interventions to increase access and affordability to referral care as both direct and indirect costs were similarly reported. We also found that knowledge and comprehension of the actual referral - why patients were referred - was a barrier. Of note however, this was only reported by clinicians. This lack of understanding may create opportunities for misconceptions about the need for referral, such as the association of a referral with an impending poor prognosis, as well as lead to seeking alternative sources of care e.g. traditional medicine men. Interventions to address referral non-compliance in hypertension care will therefore need to strengthen provider-patient communication to improve clarity and comprehension on the need for referral. Finally, perceptions about service availability at the receiving facility, and the quality of available services was also identified as a barrier to referral compliance in our study – unearthing a potential intervention point to bridge the information gap for referred patients that may improve referral completion.
Perceived Benefits And Concerns Regarding The Peer Based And Hit Components
Participants noted that peer support could be leveraged to assist patients overcome some of the identified barriers. A peer could help referred patients plan for timely referral completion by scheduling their visit for them, inquiring about clinic and service availability, and following up with participants as they prepared to complete their visit. In addition, participants agreed that the peer-patient interaction could be used to discuss some of the anticipated logistical challenges the patients may have and brainstorm mitigating strategies. The peer-patient interaction could also be leveraged to improve patient understanding of their disease state and need for referral. Finally, once patients arrived at the receiving facility, peers could provide navigation services so patients knew where to go to access the required service (26, 30). Of note, a prior study identified that the lack of preferential treatment for referred patients at the receiving facility was a barrier to referral completion, a barrier that would be addressed by peer navigation services (31).
Prior literature on barriers to peer based care approaches includes role conflict – whereby the role of the peer within the ecosystem of healthcare providers is unclear, and arising hostilities from this including an unsupportive work environment (32). Our study found that while the HIT and peer-based model were acceptable and well regarded by patients, providers and general community members, there were two main concerns raised regarding the proposed strategies. First, there were apprehensions about confidentiality of patient data with the use of both the HIT and peer-based model. In this study, the risk of loss of patient confidentiality was noted if the provider were to share information about a patient’s condition to a peer, or if a peer divulged the information with other parties. Training, therefore, would be required to ensure peers understand that they have to maintain patient confidentiality and not divulge information with unauthorized persons. Secondly, there were uncertainties on the effect the use of HIT would have on clinician-patient encounters. Prior literature has highlighted the need for ensuring HIT either augment or at least do not impede patient-provider communication (33). Similarly, participants thought that clinicians would interact less with the patient due to a need to enter data on the HIT tools.
Incorporation Of Findings To Intervention Refinement
Our findings on factors that could affect uptake and success of our intervention were presented to a multi-stakeholder group comprised of patients with hypertension, clinicians, STRENGTHS researchers, peer health workers, health system administrators and health informatics professionals. The team utilized the findings to make adaptations to the STRENGTHS intervention through a human-centered design approach aimed at improving acceptability, appropriateness and feasibility of the final form of the intervention. We have described these adaptations in detail separately (35).
Our proposed HIT and peer based support strategy did not address all the demand and supply side problems reported in this study. Future implementation science should therefore consider the persisting barriers to completion of referral for hypertension (6). On the demand side, strategies to alleviate financial constraints are critically important to improve completion of referrals (34). On the supply side, the long distance to services, limited number of expert providers, stock out of supplies and long queues require attention. In addition, lack of adequate numbers of ambulances combined with the general poor transport infrastructure disables referrals for very sick patients.
Importance Of Community Engaged Research
It is extremely important to engage users of any proposed strategy early – during the pre-design formative phase, and thereafter during every step of strategy design and implementation (35–38). By listening to concerns from patients, providers and general community members, the STRENGTHS study incorporated the voices of locals into the emerging strategy. The benefits of this approach are numerous as evidenced by community-engaged research, an approach to research designed to improve health through involvement of individuals from the community of research in shaping the research activities. The research team fully appreciated experiences and indigenous knowledge of community members, and treated them as co-creators of knowledge in the research (39–41). This approach allows for exchange of deeply informed understanding of culturally and context specific information that consequently facilitates design and implementation of acceptable, useful, and scalable health programs (27, 41).
Study Limitations
A strength and also limitation of our study is its qualitative design; therefore, our findings may not be generalizable to other settings as the contexts may be different, and subsequently, perceptions about referral care, or the peer and health IT intervention by different stakeholders may be different. In addition, we did not selectively engage patients who had prior experience with referral care, such that some of them may not have actually ever been referred. Findings may be different if only patients who had prior experiences with referral care were recruited.