Understanding health systems challenges in providing Advanced HIV Disease (AHD) care in a hub and spoke model: A qualitative analysis to improve AHD care program in Malawi.

doi:10.21203/rs.3.rs-3025198/v1

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Research Article

Understanding health systems challenges in providing Advanced HIV Disease (AHD) care in a hub and spoke model: A qualitative analysis to improve AHD care program in Malawi.

https://doi.org/10.21203/rs.3.rs-3025198/v1

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published 26 Feb, 2024

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Background

Despite tremendous progress in improving antiretroviral therapy (ART) and access to ART, many patients have advanced HIV disease (AHD). AHD patients, whether initiating ART or representing care after disengagement, have an increased risk of morbidity and mortality. EGPAF launched an enhanced care package using a hub and spoke model to optimize AHD care in Malawi. This model improved supplies availability and appropriate linkage to care. We utilize a hub-and-spoke model to share the health facility challenges and recommendations on the AHD package for screening and diagnosis, prophylaxis, treatment, and adherence support.

Methods

This qualitative study assessed facility-level experiences among healthcare workers (HCWs) and lay cadres (LCs) providing AHD services to patients through the intervention package. The study population included HCWs and LCs supporting HIV care at four intervention sites. Eligible study participants were recruited by trained Research Assistants with support from the health facility's nurse to identify those most involved in supporting AHD patients. A total of 32 in-depth interviews were conducted. Thematic content analysis identified recurrent themes and patterns across participants’ responses.

Results

While HCWs and LCs stated that most medications are often available in both hub and spoke sites, they reported that sometimes there are limited supplies and equipment to run samples and tests necessary to provide AHD care. More than half of the HCWs stated that AHD training sufficiently prepared them to handle AHD patients at both hubs and spoke levels. The HCWs and LCs reported weaknesses in the patient referral system within the hub-and-spoke model in providing linkage of care to facilities, specifically noting improper referral documentation, incorrect labeling of samples, and inconsistent availability of transportation. While HCWs felt that AHD registers were time-consuming, they remained motivated as they thought they provided better patient services.

Conclusions

These findings suggest the importance of offering more comprehensive AHD services. The enhanced AHD program addressed weaknesses in service delivery through decentralization and providing services through a hub and spoke model, improved supplies availability, and strengthened linkage to care. Additionally, addressing the recommendations from service providers and patients is essential in improving health and survival among AHD patients.

HIV

advanced HIV

health systems challenges

hub and spoke model

Malawi

Malawi has one of the highest HIV prevalence rates in the world, with an HIV prevalence among adults aged 15–49 years of 8.9%, corresponding to approximately 946,000 adults living with HIV, according to MPHIA 2020–2021 [1]. HIV and AIDS remain the most common cause of death in Malawi, with an estimated 13,000 deaths from AIDS in 2021[1, 2]. Despite tremendous progress in improving antiretroviral therapy (ART) access through the test and treat strategy in Malawi, a significant proportion of patients have advanced HIV disease (AHD), and their proportion has remained constant in recent years despite ongoing improvements in access to antiretroviral therapy (ART) [3].

In Malawi, 28% of patients present with AHD at initial HIV diagnosis. Additionally, an increasing number of patients represent care at an advanced stage of HIV following disengagement from treatment [5]. In Malawi, 22% of patients return to care with AHD. Patients with AHD are at higher risk of death, even after starting/restarting treatment, with the risk increasing with decreasing CD4 cell count, especially with a CD4 cell count that is less than 100 cells/mm³ [4]. The leading causes of mortality among adults with AHD include tuberculosis (TB), severe bacterial infections, cryptococcal meningitis (CM), toxoplasmosis, and Pneumocystis jirovecii pneumonia (PCP) [6–8].

The WHO developed guidelines for managing AHD to reduce morbidity and mortality among patients with AHD. This package of interventions includes rapid ART initiation, enhanced screening and treatment and/or prophylaxis for major opportunistic infections such as TB and CM, and strengthened adherence support, including tailored counseling to ensure optimal adherence to the AHD care package [9].

EGPAF supported an AHD intervention model to optimize the services offered to patients with AHD in Malawi. The integrated AHD package is built on WHO guidelines and includes enhanced decentralization of care through a hub-and-spoke model to bring AHD care geographically closer to patients.

An enhanced package of AHD interventions was implemented, including decentralized CD4 tests, TB-lipoarabinomannan antigen assay (LAM), and initiation of patients on prophylaxis, including TB preventive therapy (TPT) and cotrimoxazole prophylaxis (CPT). The facilities adopted the model for improvement used in quality improvement approaches to respond to the system issues that fell within their control. A prioritization matrix was used, and it focused on addressing problems that require fewer resources, less time to respond, and a higher impact on AHD care. Locally formulated solutions complemented the system improvements made at the national level. The team met weekly to review their response plans, termed Plan Do Study Act (PDSA), addressing weak client flow, stock management inefficiencies, and human-related bottlenecks. The QI teams innovated around AHD care bottlenecks to drive the uptake of newly introduced treatment regimens for opportunistic infections and strengthen their pharmacovigilance.

A hub-and-spoke model was utilized to deliver appropriate healthcare services to peripheral sites. A hub site was defined as a health facility with comprehensive packages of AHD care and managed patients needing hospitalization. Spoke sites offered outpatient and routine care to stable AHD patients and referred critically ill patients to hubs nearby. This hub-and-spoke model was implemented to create linkages between referral networks and provide strengthened community-based care to reduce the risk of loss to follow-up. As part of the evaluation, the project conducted a qualitative assessment to examine the views of health service providers supporting AHD care.

Objectives

This study assessed providers’ experiences implementing an enhanced package of AHD care through the hub and spoke model, aiming to contribute to a more comprehensive understanding of challenges in delivering optimal care to AHD patients. Through their suggestions and recommendations, we further identified ways to strengthen supervision and treatment service delivery for AHD patients.

Study design

This qualitative study design used in-depth interviews (IDIs) among healthcare workers (HCWs) and lay cadres (LCs) to explore facility-level experiences in providing the enhanced package of AHD services.

Site selection

Four sites were purposively selected from the intervention sites and included two hubs and two spokes intervention sites. The selection was based on areas with the highest patient volume. Sites were also selected to have an equal number of rural and urban locations.

Study population

The study population included HCWs and LCs supporting the four selected study sites. Eligible HCWs included those involved in HIV care in the intervention sites, including laboratory staff, ART nurses, and clinicians who consented to participate. HCWs in training were excluded. Eligible LCs included expert clients (ECs), Health Surveillance Assistants (HSAs), HIV Diagnostic Assistants (HDAs), and other LCs involved in AHD care, including screening and follow-up with HIV patients. ECs and HSAs not involved in screening and follow-up with patients were excluded.

Participant recruitment

To recruit HCWs, the research assistants (RAs) spoke with the health facility's nurse to identify eligible participants who provided AHD services to people with HIV (PWHIV) and were present at the project inception phase and during the data collection period. There was more emphasis on recruiting ECs since they are generally more involved in counseling and follow-up of patients at their homes. In the selected health facilities, all HCWs and LCs that met the inclusion criteria were included in the study.

Data collection

Data were collected between December 2021 and February 2022. RAs obtained written informed consent from all study participants before any data collection. All data collection occurred at the health facility.

IDIs were conducted with study participants using semi-structured IDI guides. The guides included topics such as knowledge required for diagnosis and treatment of patients with AHD, perceptions of the HCWs' self-efficacy in diagnosing and treating patients presenting with AHD experiences providing AHD services, and how the program affected their job satisfaction. IDIs were led by RAs who were hired and trained by EGPAF. RAs used a semi-structured interview guide, using probes to get in-depth responses during the interview process. All IDIs were audio-recorded and completed in English or Chichewa, depending on participant preference. The recorded IDIs were translated from Chichewa to English, as appropriate. IDIs were transcribed by the RAs soon after data collection to minimize recall errors and improve accuracy. The interview transcripts also documented descriptions of the participants’ non-verbal responses. Demographic data for the participants were collected as well.

Analysis

Data were analyzed using thematic analysis. A short-answer study was conducted, which consisted of compiling all the responses per question from the interview transcripts. Collected responses were then analyzed for overarching themes, and findings were summarized through text-based summaries and data display tables. In the data display tables, data were separated by study population and study site type (hub vs. spoke) and compared for similarities and differences. Textual data was carefully analyzed to identify recurrent patterns and themes. Text excerpts representational of identified themes were included.

Thirty-two IDIs were conducted, including 16 with HCWs and 16 with LCs. The mean age for HCWs and LCs was higher at spoke facilities at 37 years old, compared to 35 at the hub facilities. There were three clinicians, one registered nurse, two laboratory technicians, and one nurse midwife from the hub sites. From spoke sites, there were three clinicians, four nurse midwife technicians, one adherence and support officer (ASO), and one hospital attendant. Of note, more female HCWs and LCs were at spokes than hubs. Hub facilities also had more HCWs and LCs working for more than ten years in their position, with 20% working for more than ten years at hubs compared to 13% working for more than ten years at spokes (Table 1).

Table 1

Demographic data for healthcare workers and lay cadres at hub sites and spoke sites
	Spoke (N = 16) N (%)	Hub (N = 16) N (%)
Age (years)
Median age [IQR]	37.5 [7–53]	35.13 [9–35]
Gender
Male	5 (31)	8(50)
Female	11(69)	8(50)
Position Type
Clinician (MA/CO/MD)	3(19)	3(19)
Reg nurse		1(6.3)
Lab technician		2(13)
Nurse Midwife tech	4(25)	1(6.3)
Nurse tech	1(6.3)
Reg N/M		1(6.3)
Adherence Support Officer (ASO)	1(6.3)	2(13)
Hospital Attendant		1(6.3)
Expert Client (EC)	4(25)	2(13)
HIV Diagnostic Assistant (HDA)		2(13)
ART Clerk	3(19)	1(6.3)
Duration worked in position (years)
< 1	1(6.3)
1–5	9(56)	10(67)
6–10	4(25)	2(13)
> 10	2(13)	3(20)

Themes

The results have been organized into four themes: the benefits of the improved AHD packages of services, positive changes reported with the new AHD program, challenges in providing AHD services to patients and solutions implemented, and HCWs and LC requests and recommendations.

Benefits of new AHD care package according to healthcare workers and lay cadres.

Participants highlighted that introducing quality improvement (QI) sessions under AHD care added value to their work because they could discuss patient welfare and make appropriate decisions. They further expressed that the introduced AHD program was helping with patients' timely treatment initiation (Table 2).

They also noted that QI had brought additional value to their services and facilities because they could see, in real-time, their work's direct impact on improving patient care. HCWs at spoke sites said they feel better equipped to handle AHD patients and provide better services by identifying gaps and not missing conditions they may have previously missed (Table 2).

HCWs and LCs in both hubs and spokes reported that improvements in patient care through AHD-related services brought additional satisfaction to their job. HCWs described feeling empowered because they see progress in their patients' health, fewer deaths, and better health outcomes. Overall, they feel motivated and have a strong desire to stay focused on the client's welfare and see that everyone gets the proper support (Table 2).

LCs also described feeling more empowered and equipped to provide AHD care to patients and support defaulters than when they give patients medications and send them home.

HCWs at hubs and spokes reported that the new AHD training and service provision had increased their workload. The increased workload is attributed to more rigor to detail in assisting patients adequately without missing any conditions, which are considered added tasks. They noted that the new protocol and AHD register are time-consuming. However, they stay motivated, knowing they provide improved patient care and services. At both spokes and hubs, HCWs expressed that they can directly observe their work's impact on improving patient care. HCWs at spoke sites said they feel better equipped to handle AHD patients and provide better services by identifying gaps and not missing conditions they may have previously missed (Table 2).

Table 2

Benefits of the improved AHD package of services
Theme	Benefits of the improved AHD package of services
Benefits of the quality improvement system	It [quality improvement] has added a certain kind of value to our work because when the results are shared in real time, it means that the patient will receive the necessary treatment in time, which is quite different from the previous days where when you collect a sample from an AHD patient, we were telling them to wait at home for one week before they return to the facility. However, this new process is helping our clients to start treatment on time. (Male HCW, Hub, Lab technician, 50) We can track the progress of the work we are doing here and be able to recognize our flaws and be able to rectify the problem (Female HCW, Spoke, Nurse midwife tech, 27) Quality improvement has helped us so much that we can sit down and discuss our problems based on the reports. We take the issues to the QI and then discuss how we can improve the problem that we have as a hospital. For example, a separate clinic was specially made for AHD patients because it was realized that they were not receiving the necessary assistance required when information was given to them as a whole group. That decision was made based on Quality improvement. (Male LC, Hub, Adherence Support Officer, 28)
Improved job satisfaction	This has just motivated us to have a strong desire to stay focused on our clients and see that everyone is getting the proper support (Female LC, Spoke, ART Clerk, 46) It [AHD program] has improved my satisfaction because I can see the change in the work we do; I can screen assess in any way possible, and not only are we targeting clients who have AHD but also the new ones so that we can be able to classify them (Male HCW, Hub, Nurse Midwife Tech, 27) I am satisfied when I see the excellent results that are coming out because I believe that with the coming of the AHD as a program, the main goal is that we should reduce the mortality rate for those patients that are living with HIV so because we are following this procedure, we are reducing ART deaths. Secondly, it is also encouraging us that most patients are now having their viral load suppressed since we do not want to have more patients having a high viral load, which will show that we need to work harder. So when we noticed that we had an AHD patient, and later on, because of this AHD program when the person's sample was collected and tested for viral load. The results are suppressed viral load such that it is undetectable; we know that we are working tirelessly for this, and we are happy to see such results. (Male HCW, Hub, Reg N/M, 47)
Increased ability to care for AHD patients	Our work in this program has improved the care that AHD patients get from this facility. We were missing some things in the past because of a lack of knowledge, and we lost some of our patients. However, with the coming of AHD as a program, we can know that when our HIV patient is admitted to the ward, we need to screen them for other infections. In the screening process, we diagnose some other diseases like cryptococcal meningitis, and as soon as we analyze them, we prescribe drugs to this patient. At the end of everything, we can save a life, unlike when our patients were admitted to the wards without us knowing what was happening to them. So, the coming of AHD as a program has improved the care that AHD patients receive from this facility. We know now that this patient has such conditions, and this one has this condition. (Female HCW, Spoke, Nurse midwife tech, 30)

Positive changes from the AHD program

HCWs and LCs across the hub and spoke sites discussed the enhanced AHD services and how it strengthened their ability to treat patients adequately. Most HCWs said they are now capable and confident in screening for opportunistic infections among AHD patients. Many said they have the testing and treatment for TB available at their facilities. Because of the improved AHD services available due to the program, HCWs mentioned they engage with patients more and can provide tailored care depending on their needs (Table 3).

Furthermore, HCWs and LCs also described an increased ability to identify AHD patients due to training. They specifically mentioned that they could better identify patients who require special care and are better equipped to follow up with them (Table 3).

HCWs noted increased mentoring and support in providing AHD services. HCWs expressed that they were satisfied with the mentoring necessary to provide care to AHD patients. They also explained that they could seek guidance and support when they experienced difficulties providing care to AHD patients (Table 3).

Table 3

Positive changes from the AHD program
Theme	Positive change due to the AHD program
Availability of additional AHD services	We can now provide our patients with better services; we can track everything and not miss any condition in a patient. (Female HCW, Spoke, Clinician (MA/CO/MD, 28) So, AHD as a program is good because patients can get assistance not only for HIV but also for other conditions which, at first, they were ignoring but with the coming of this AHD program, everyone is screened to discover if s/he is developing some conditions that can be treated before they reach the climax. (Female LC, Spoke, ART Clerk, 41). Yes, in the past, we would spend less time with our patients because we were not doing all the screening that we are doing now, but now all the patients are being screened for other diseases once found HIV positive. (Female HCW, Spoke, Nurse Midwife Tech, 40).
Increased training to identify AHD patients and for follow-up	We have the ability. Firstly, we use all the methods that we learned from the training, such that when a person defaulted from taking their drugs when we follow up on him, or she and s/he have returned to care, especially if s/he is at an advanced stage of HIV, and s/he has gone beyond WHO stages precisely when s/he is on either stage 3 or stage 4. We have the ability because when we are chatting with the patient, we notice such conditions that this patient has reached the advanced stage of HIV disease. So, after that, there is that chance that we test for CD4 count and then go further to other tests. (Male HCW, Spoke, Nurse Tech, 46) The training opened up some important topics we previously did not know, but since we attended the training, we have been able to help out AHD patients by referring them to the right doctor for the proper treatment. (Female LC, Hub, HDA, 27).
Increased mentoring and support in providing AHD services	We have mentors who train us to care for people and our friends from EGPAF; sometimes, they orient us and have collaborative meetings. Friendly, we learn what our friends are doing so that we can assist AHD patients. (Female HCW, Hub, Reg nurse, 32). Yes, we received the mentorship, and when we experience problems, we can ask to say we do not understand here; how will we do this? Moreover, sometimes, you need help understanding the screening process, and we still ask them. (Female HCW, Spoke, Nurse Midwife Tech, 30).

Service providers need help in providing AHD services.

Half of the health care workers felt that training on AHD needed to be improved due to the short duration of the movement, insufficient information provided during training, and was complicated by staff turnover, requiring training of new staff. HCWs at spoke sites said that the training sessions needed to be longer. HCWs at spoke sites also complained that those trained had left the facility, so additional training is required. LCs from both hubs and spokes reported they found it challenging to learn second-hand from others who had been trained and were now training them. LCs at hub sites further explained that the training they received from their peers needed to be improved and that they needed more information (Table 4).

Most HCWs and LCs in both hubs and spokes described those medications as almost always available for patients. However, many HCWs and LCs expressed concern over their facilities' lack of available supplies. They noted a need for more sample collection kits for CD4 tests and cartridges for TB LAM tests. HCWs and LCs at both hub and spoke sites described inadequacies in equipment and machines to run tests, including point-of-care (PoC) machines, CD4 counters, and chemical analyzers. Both site levels also reported that a few staff know how to use the machines. Some HCWs and LCs at spoke sites reported a staff shortage in collecting samples for PoC machines. HCWs and LCs at hub sites noted that additional machines lacking at the facilities are chest X-ray machines, abdominal ultrasound scanners, and GeneXpert machines. HCWs stated that when spoke sites run out of supplies, they request kits from hub sites. Because of this, hub sites reported being overwhelmed by receiving requests from the two said sites (Table 4).

HCWs from hubs said that the referral system to transfer AHD patients was going well because they had ambulances that could transport the patients, while most HCWs from the spoke sites noted that they faced issues with transportation transfers. One of the main challenges reported by HCWs at the spoke sites was that the ambulance system needed to be fixed to transport AHD patients to the hubs. They said the ambulance was not always available or sometimes did not have petrol. This would leave the patients to find their mode of transportation, which could be challenging and unsustainable due to financial challenges. HCWs at both hubs and spokes said they face issues and difficulties with the vehicle when referring AHD patients. HCWs at spoke sites reported problems with the referral documentation for patients arriving at the facility, including a need for proper health passports, written treatment history information, or referral letters. Many HCWs at spoke sites explained that the biggest challenge in transferring patients is their reluctance to transfer care since they prefer to go to the same facility they are familiar with and comfortable at (Table 4).

HCWs at hubs noted that the delay in receiving the lab results creates challenges in diagnosing patients with TB. Also, hub site HCWs reported that the spoke sites must correctly fill out information for samples. HCWs at hubs and spokes said the text in the register needed to be bigger, and they found it challenging to fill out. Furthermore, transportation for home visits was noted as a challenge in providing AHD services. HCWs noted that adding clients who are not from Malawi to the register and following up with them is difficult. HCWs at spokes reported challenges dealing with patients who were in denial of their diagnosis and unprepared to begin treatment (Table 4).

Table 4

Challenges in providing AHD services to patients
	Challenges in providing AHD services to patients
Health Care Worker Training	I am the only one who attended the orientation [training] out of 3 clerks, which means that those who did not participate in the orientation do not know more about it apart from the information that those who attended the orientation, like me, shared with them. (Female LC, Spoke, ART Clerk, 41) Our friends [co-workers] advised us [information based on the training they attended]. However, second-hand information is complex because the way they understand the information in class and what they can grasp is different. I believe they did not explain everything, and some things were other because there is an element that while they were learning, they might have been on their phone, or they were thinking about something else, or they were outside, so they may not have explained everything because they missed it. (Female LC, Hub, Adherence Support Officer, 31)
Supply availability	We often refer to significant hospitals because we need the necessary supplies to conduct the tests. (Female HCW, Spoke, Clinician (MA/CO/MD), 29). We need cartridges to conduct a CD4 cell count, but the supplier still needs to give us those things, so we cannot do a CD4 Cell count. (Male HCW, Hub, Nurse Midwife tech, 27).
Patient referral forms	The main problem could be poor communication; the patients are being referred here [from the hubs] but need more documentation. (Female HCW, Spoke, Nurse Midwife tech, 29) Some challenges include labeling the samples; the labeling is done differently from the one on the form… most of the columns are not filled. For example, like staging, they do not fill anything on that. So, when they do not feel on the stage of the patient's sample, it becomes difficult for us to conduct such test on such sample here at our laboratory because we do not know what difficulties we are supposed to conduct since staging guides us to know that for this sample, we are supposed to conduct such test. We have been trying to communicate with them about it, but they do not change; maybe they need another orientation on how to fill in the form. (Male HCW, Hub, Lab technician, 50)
Findings that were similar across both sites	Patient referral systems: The issue is the means of transport. Suppose the means of transportation is available, and the ambulance has enough fuel. In that case, it is not that difficult to transfer an AHD patient from a spoke site to here as a hub site or transfer that same AHD patient from here [hub site] to a spoke site that is within the catchment area of their village where they will continue getting their medication. It is easy if the vehicle is available or if fuel is enough to cater for the transfer (Female HCW, 27). Healthcare worker challenges providing services: The AHD program increased our workload, which is vital because we assist patients fully, and it is an added task for one to have fully helped a patient without missing any condition. (Female HCW, Spoke, Clinician (MA/CO/MD), 28).

HCW and LC requests & recommendations

HCWs reported that a constant availability of supplies and equipment is needed to improve their ability to provide care for AHD patients. They request that equipment, including CD4 count machines, x-ray machines, viral load machines, and FBC machines, are made available. They highlighted the need for adequate supplies of CD4 cartridges and sample collectors for serum Cr-Ag and urine LF-LAM tests. HCWs also noted that increased healthcare worker capacity must be increased to provide better AHD care, including hiring additional staff members such as lab techs and clinicians. HCWs recommended establishing meetings with HCWs from hub sites and spoke sites to discuss gaps in AHD treatment guidelines (Table 5).

HCWs at both hub and spoke sites emphasized the need for additional training on many topics. Hub sites reported that spoke sites needed more training on labeling samples because they arrived incorrectly labeled, causing challenges in determining which tests to conduct at hub sites. This made them unable to run the tests because they did not know the reasons for testing. HCWs said they need training on CM, including questions regarding drug preparation, administration, and different treatment plans for CM. Furthermore, training was requested on new topics, including viral load interpretation and liver function tests. HCWs also requested training on best practices for keeping records organized in the registry (Table 5).

HCWs emphasized the need for additional training on counseling skills to help them better advise patients and strengthen patient adherence to care. This would also help them address challenges with defaulters. Lastly, HCWs stated they want refresher training to keep their knowledge updated and for continuous mentorship and supervision (Table 5).

To strengthen adherence through community-based support/home visits, HCWs noted that additional support is needed. LCs from both hubs and spokes mentioned needing more help for home visits, including other allowances to increase the frequency of visits. They also wanted food parcels to provide to clients when they visit their homes. They described difficulties during the rainy season and requested raincoats and transportation support for home visits (Table 5).

Table 5

Recommendations from HCWs and LCs to improve AHD care across hubs and spokes
Theme	Recommendations from HCWs and LCs
Supplies and equipment	We need enough equipment always available for AHD; yes, they say cartilages for CD4 are expensive, but we need them, supply for material for screening should also be available, and if or when we run out of these things, they should quickly resupply. (Female HCW, Spoke, Clinician (MA/CO/MD), 29)
Training	Providing additional training and conducting refresher training to those healthcare workers that were trained way back would help improve our ability to provide care to AHD patients. (Female LC, Hub, HIV Diagnostic Assistant, 27) On the diagnosis, it [training] was sufficient, but on the management, it [training] needed to be increased, and we need the necessary medication at this facility. On top of that, our health workers needed to be trained on how this new treatment. So, if one client is diagnosed with cryptococcal meningitis, they are sent to the District Hospital on specified dates. (Male HCW, Hub, Nurse Midwife Tech, 27)
Counseling	Because the person has a low CD 4 count, without counseling, it does not work [adherence], but if they can train and explain to us [lay counselors] properly, we would be the ones doing the counseling. (Female LC, Hub, Hospital Attendant, 49) It usually involves telling the patient the ramifications of skipping taking medicine and the benefits of taking medication faithfully; it also involves letting them understand that they need to set their own time for taking the medication without being pressured to follow a particular schedule. We also help counsel our very own AHD patients. (Female HCW, Hub, Clinician (MA/CO/MD), 24).
Mentoring/supervision	[Another main request was] knowledge, continuous mentorship, and supervision. Those who do not know should know; on care, they should monitor our data. (Male HCW, Hub, Lab technician, 35)
Home visits	We need to strengthen our relationship with our AHD clients by at least visiting them [at home] twice a month so that we can know how they are doing or how things are going out for him or them. (Female LC, Spoke, Expert client, 45).

Implementation of real-time mitigation efforts

This study was conducted as operations research to identify challenges with the enhanced AHD program and implement solutions to identified problems in real-time. Solutions were implemented after data collection, so the interview data were unaffected. However, it is essential to acknowledge the steps to address the identified challenges.

To address the inadequacies in training, the facility orientations are now jointly provided by the deployed AHD clinicians and trained facility Ministry of Health staff. Regarding the increased workload resulting from the enhanced package of services, facilities used data review meetings at the ward level to motivate a team with the progress made in patients’ health. Concerns of increased workload dissipated over time. Lastly, regarding the request for increased mentorship and supervision, the QI team successfully lobbied retention of specific leaders of the AHD program in the wards and facilities until the upcoming team was sufficiently acquainted with the processes and delivery of AHD services.

HCWs and LCs described solutions they have implemented to help address gaps in delivering AHD care to patients. HCWs at both hubs and spokes reached out to head staff members or the district health officer when low on supplies and equipment. For staff shortages, HCWs at hub sites said they had learned tasks of other positions to provide support when needed. HCWs also described providing additional counseling to patients not ready to start treatment. For patients that live far away, HCWs said they would occasionally send medications with other community members. Lastly, HCWs at spokes reported using WhatsApp to send test results and avoid further delays and noted that bike and scratch cards have helped them reach patients needing AHD care. If a patient is too ill, LCs reported they could counsel a guardian or wait until the patient is stable enough to guide. For patients that moved out of Malawi, LCs at spokes attempted to contact them through relatives in the village, and if unsuccessful, they documented in the register that the patient had left.

Overall, our study demonstrated that implementing an enhanced package of AHD care advocated by the WHO [17] is feasible in the country and is acceptable to service providers. Our findings conform to the literature highlighting that implementation of the advanced HIV disease package is possible to implement and can contribute to ending AIDS as a public health threat [22].

HCWs emphasized issues within the patient referral system, explicitly reporting that appropriate paperwork and documentation are necessary to link care between the hub successfully and spoke facilities. Other studies have reinforced the importance of well-functioning referral systems in initiating care and preventing patients from being lost to follow-up. A study assessing the referral system to link patients to care in Tanzania highlighted that providing referral forms was crucial in facilitating patient entry into the facility and/or ensuring patients were directed to the right facility/clinic [11]. Another study exploring the strengthening of referral systems in Mozambique found that the existence of referral slips should expedite treatment upon reaching the health facility and that the centrality of referral systems is essential in maintaining the continuum of care [12]. Additionally, the transportation issues within the patient referral system exacerbate challenges at the facility. The distance from the hub and access to transportation is vital to optimizing care linkage [13]. The overextension of spoke sites, or when spokes are placed too far from hubs, impedes adequate service delivery [13]. To address weaknesses in the patient referral network, future referral tools should be simplified to the extent possible [24].

Another central concern highlighted by HCWs was supply and equipment shortages in the facilities. Insufficient supplies are a common theme, as providers cite test kit shortages as a critical barrier to facilitating adequate care [16]. POC CD4 testing is more cost-effective than laboratory-based [29, 30]. However, if in short supply or malfunction can be a source of frustration among HCWs providing AHD care [14]. HCW observed that any disturbances in equipment and supplies lead to challenges in diagnosing patients and delay test results [15]. This issue is further compounded as spoke sites run out of supplies and request test kits from hub sites, which results in hub sites needing to be more relaxed by the demand for spoke sites [13]. Literature has highlighted that proper stock management is critical to reducing the delays in turnaround times [15].

Challenges with PoC testing resulted in increased dependability on unreliable PoC machines with limited staff trained to use them properly. Several studies have described that changing testing algorithms, lack of confidence in using specific test kits, and lack of sufficiently trained staff to perform the testing (including lack of updated training) led to challenges in PoC testing [18, 19]. This may stem from poor regulatory control, difficulty monitoring quality, and limited availability of guideline documents to safely and effectively implement PoC devices [20].

To address inadequacy, targeted HCW training based on weaknesses identified in pre- and post-test evaluations has improved HCW diagnostic and management skills [21]. Additionally, for PoC testing, extensive training emphasizing quality, standardized logbooks, proficiency testing, and new kit lot verification should be explored [25]. To avoid challenges with delays in test results, instant messaging platforms, such as WhatsApp, can be used. Patients who are harder to reach should be traced by phone or through home visits and distance contact through text messaging, telephone consultation, and mobile health [26].

Furthermore, HCWs noted that home visit support is needed for patients who are too sick to address the frequency/intensity, duration, and quality of the home visits. Specifically, long distances and rough terrain, especially during the rainy season, can delay transport and make visitation to the most vulnerable even more complex [23].

Strengths and Limitations

The main strength of this study lies in the use of a qualitative approach, which helped to obtain a rich, complete, and in-depth exploration of the issues surrounding the feasibility and acceptability of an enhanced package of AHD care from diverse groups of service providers. Limitations include the subjective nature of interviewees' responses and the risk of social desirability to please the research team.

These findings suggest the importance of addressing the weaknesses in the delivery of services within the hub-and-spoke model to comprehensively tackle facility-level challenges and ensure they are not impeding the services provided to AHD patients. Adequately addressing the weaknesses in delivering services within the hub-and-spoke model, improving supplies availability, and appropriate linkage to care is necessary to implement enhanced AHD care successfully.

AHD: advanced HIV disease, ART: antiretroviral treatment; EGPAF: Elizabeth Glaser Pediatric AIDS Foundation; EC: expert client, HCW: health care worker, HDA: HIV diagnostic assistant, IDI: in-depth interview; IRB: institutional review board; LC: lay counselor, RA: research assistant, TB: tuberculosis, WHO: World Health Organization

Ethics approval and consent to participate

All study participants and/or legal guardians voluntarily provided written informed consent before participating. Ethical clearance was obtained from the National Health Science Research Committee on 21/06/2720. The ADVARRA Institutional Review Board reviewed and approved the study on 6 October 2021, protocol number Pro00057717. The relevant guidelines and regulations performed all study methods.

Consent for publication

Not applicable

Data availability statement

Data are available upon reasonable request to the corresponding author.

Competing interests

The authors declare that they have no competing interests.

Funding

Bill Melinda Gates Foundation (BMGF): Responsible for funding and supporting EGPAF activities by the BMGF-EGPAF cooperative agreement/ investment number ID: INV-004547 scope of responsibilities; providing high-level oversight and strategic direction for the project to strengthen HIV care and treatment service delivery for people living with AHD by the Country Work Plan. The discussions, implementation framework, and conclusions in this paper are those of the authors and do not necessarily represent the views of the funding agencies.

Authors’ contributions

TM, LK, AT, and LD designed the study. TM, LC, and RC oversaw data collection in the field. LK, SK, and JP analyzed the data. LK, SK, and JP drafted the manuscript. All authors were involved in reading and approving the final manuscript.

Acknowledgments

The authors thank the study participants and research assistants who collected the data. We would also like to thank EGPAF and the Ministry of Health through the Department of HIV and AIDS for operations guidance on the scope and content of the project to strengthen HIV care and treatment service delivery for people with advanced HIV disease (AHD) and review of this manuscript.

This work was supported by the Bill & Melinda Gates Foundation [INV-004547]. Under the grant conditions of the Foundation, a Creative Commons Attribution 4.0 Generic License has already been assigned to the Author's Accepted Manuscript version that might arise from this submission.

Malawi Population-based HIV Impact Assessment 2020-2021. MPHIA 2020-2021.
2019 PUD. A new model of care to reduce deaths from AIDS in Malawi: MSF. Médecins Sans Frontières (MSF) International. https://www.msf.org/new-model-care-reduce-deaths-aids-malawi. Accessed 3 August 2022.
Consolidated Guidelines on HIV Prevention, Testing, Treatment, Service Delivery, and Monitoring: Recommendations for a Public Health Approach [Internet]. Geneva: World Health Organization; 2021 5 July, MANAGING ADVANCED HIV DISEASE. https://www.ncbi.nlm.nih.gov/books/NBK572722/. Accessed 24 May 2023.
Advanced HIV disease (AHD). World Health Organization. https://www.who.int/teams/global-hiv-hepatitis-and-stis-programmes/hiv/treatment/advanced-hiv-disease#:~:text=WHO%20defines%20advanced%20HIV%20disease,to%20have%20advanced%20HIV%20disease. Accessed 24 May 2023.
Kaplan SR, et al. Contemporary disengagement from antiretroviral therapy in Khayelitsha, South Africa: A cohort study. PLoS Medicine. 2017;14(11):e1002407.
Walker AS, et al. Mortality in the year following antiretroviral therapy initiation in HIV-infected adults and children in Uganda and Zimbabwe. Clinical Infectious Diseases. 2012;55(12):1707-1718.
Ford N, et al. Causes of hospital admission among people living with HIV worldwide: a systematic review and meta-analysis. The Lancet HIV. 2015;2(10):e438-e444.
B-Lajoie M-R, et al. Incidence and prevalence of opportunistic and other infections and the impact of antiretroviral therapy among HIV-infected children in low-and middle-income countries: a systematic review and meta-analysis. Clinical Infectious Diseases. 2016;62(12):1586-1594.
World Health Organization. Guidelines for managing advanced HIV disease and rapid initiation of antiretroviral therapy. Geneva, Switzerland: WHO, 2017. http://www.who.int/hiv/pub/toolkits/advanced-HIV-disease-policy/en/. Accessed 15 January 2018.
Nsigaye R, Wringe A, Roura M, et al. From HIV diagnosis to treatment: evaluation of a referral system to promote and monitor access to antiretroviral therapy in rural Tanzania. J Int AIDS Soc. 2009;12:31. doi:10.1186/1758-2652-12-31.
Give C, Ndima S, Steege R, et al. Strengthening referral systems in community health programs: a qualitative study in two rural districts of Maputo Province, Mozambique. BMC Health Serv Res. 2019;19(1):263. doi:10.1186/s12913-019-4076-3.
Elrod JK, Fortenberry JL. The hub-and-spoke organization design: an avenue for serving patients well. BMC Health Serv Res. 2017;17:457.
Campbell C, Scott K, Madenhire C, Nyamukapa C, Gregson S. Sources of motivation and frustration among healthcare workers administering antiretroviral treatment for HIV in rural Zimbabwe. AIDS Care. 2011;23(7):797-802. doi:10.1080/09540121.2010.525622.
Shiferaw MB, Yismaw G. Magnitude of the delayed turnaround time of laboratory results in Amhara Public Health Institute, Bahir Dar, Ethiopia. BMC Health Serv Res. 2019;19(1):240. doi:10.1186/s12913-019-4077-2.
Ahmed S, Schwarz M, Flick RJ, et al. Lost opportunities to identify and treat HIV-positive patients: results from a baseline assessment of provider-initiated HIV testing and counseling (PITC) in Malawi. Trop Med Int Health. 2016;21(4):479-485. doi:10.1111/tmi.12671.
Rachlis B, Bakoyannis G, Easterbrook P, et al. Facility-Level Factors Influencing Retention of Patients in HIV Care in East Africa. PLoS One. 2016;11(8):e0159994. doi:10.1371/journal.pone.0159994.
Skovdal M, Beckmann N, Maswera R, Nyamukapa C, Gregson S. Uncertainties, work conditions, and testing biases: Potential pathways to misdiagnosis in point-of-care rapid HIV testing in Zimbabwe. PLoS ONE. 2020;15(8):e0237239. https://doi.org/10.1371/journal.pone.0237239.
Schito M, Peter TF, Cavanaugh S, et al. Opportunities and challenges for cost-efficient implementation of new point-of-care diagnostics for HIV and tuberculosis. J Infect Dis. 2012;205 Suppl 2(Suppl 2): S169-S180. doi:10.1093/infdis/jis044.
Stevens W, Gous N, Ford N, Scott LE. Feasibility of HIV point-of-care tests for resource-limited settings: challenges and solutions. BMC Med. 2014;12:173. doi:10.1186/s12916-014-0173-7.
Koto MV, Maharaj P. Difficulties facing healthcare workers in the era of AIDS treatment in Lesotho. SAHARA J. 2016;13(1):53-59. doi:10.1080/17290376.2016.1179588.
Ndlovu Z, Burton R, Stewart R, et al. Framework for implementing advanced HIV disease diagnostics in sub-Saharan Africa: programmatic perspectives. Lancet HIV. 2020;7(7):e514-e520. doi:10.1016/S2352-3018(20)30101-6.
Thurman T, Kidman R, Taylor T, Chiroro P. Isibindi: A longitudinal evaluation of selected sites in KwaZulu-Natal. New Orleans, LA: Tulane University; 2013.
Sears C, Andersson Z, Cann M. Referral Systems to Integrate Health and Economic Strengthening Services for People with HIV: A Qualitative Assessment in Malawi. Glob Health Sci Pract. 2016;4(4):610-625. doi:10.9745/GHSP-D-16-00195.
Parekh BS, Kalou MB, Alemnji G, Ou CY, Gershy-Damet GM, Nkengasong JN. Scaling up HIV rapid testing in developing countries: a comprehensive approach for implementing quality assurance. Am J Clin Pathol. 2010;134(4):573-584. doi:10.1309/AJCPTDIMFR00IKYX.
Ford N, Meintjes G, Calmy A, et al. Managing Advanced HIV Disease in a Public Health Approach. Clin Infect Dis. 2018;66(suppl 2): S106-SS110. doi:10.1093/cid/cix1139.
Quaife M, Estafinos AS, Keraga DW, et al. Changes in health worker knowledge and motivation in the context of a quality improvement program in Ethiopia. Health Policy Plan. 2021;36(10):1508-1520. doi:10.1093/heapol/czab094.

No competing interests reported.

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Understanding health systems challenges in providing Advanced HIV Disease (AHD) care in a hub and spoke model: A qualitative analysis to improve AHD care program in Malawi.

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Abstract

Background

Methods

Results

Conclusions

BACKGROUND

Objectives

METHODS

Study design

Site selection

Study population

Participant recruitment

Data collection

Analysis

RESULTS

Themes

Positive changes from the AHD program

HCW and LC requests & recommendations

Implementation of real-time mitigation efforts

DISCUSSION

Strengths and Limitations

CONCLUSION

Abbreviations

Declarations

References

Additional Declarations

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