Qualitative Results
The study used an inductive approach with pre-prepared questions to guide data collection. Semi-structured interview guides were used to organise both the focus group discussions and individual interviews. The main themes that emanated from this study included: (1) expansion of care by CHWs (2) trust in CHW’s provision of care and (3) equal treatment of community members by CHWs (Table 2).
Table 2
Themes | Subthemes |
Expansion of care by CHWs | i. Linkage to health facility ii. Linkage to social support |
Trust in CHW’s provision of care | i. Health care providers’ trust in and reliance on CHWs ii. Trust in CHWs by community members |
Equal treatment of community members by CHWs | i. Proper messaging to communities from CHWs ii. CHW role modelling for community members |
Theme 1. Expansion of care by CHWs
Previously, APZU used an individualised patient-based model where CHWs were assigned specific HIV and TB patients to monitor and support. Under this model, communities eventually started associating a CHW visit with the presence of an HIV-positive client or TB patient at a targeted household. This approach inadvertently exposed the client’s confidential information on their disease status, which caused stigma and discrimination from neighbors and community members. As a result, clients reported that they were not completely comfortable with being visited by their CHW despite the fact that they appreciated the services they were receiving. Following the transition to the current household model design of the program, a CHW is now linked to all households in the community. Monthly visits now include both households with clients with chronic disease and households without chronic disease clients. This transition, along with the expansion of services, including maternal and infant care and malnutrition screening, has enhanced social interactions in the communities and decreased stigma, as explained by a client in Zalewa:
“This arrangement is good. At first, people could say that if the CHW visits you, it means you have HIV. Now that everyone is visited, the relationship has been well cemented because people do not have an idea of who is suffering from what; hence, we interact freely because of this new arrangement.” Man on Antiretroviral Therapy and Tuberculosis treatment – Zalewa
Furthermore, the expansion of services has increased screening, referrals and educational opportunities in the communities. One community member noted that the community has been able to learn about childhood nutrition and work on decreasing the incidence of malnutrition from the CHWs:
“We thought that the only way of helping a malnourished child is by feeding him/her RUTF [ready-to-use therapeutic food such as chiponde], but the CHWs have taught us to use the readily available food, which we have in our communities. Fruits, vegetables and beans. Malnutrition has decreased therefore simply because of the advice they gave us and we are able to feed our children the locally available food.” Community Stakeholder-FGD-Dambe
Community stakeholders demonstrated that they appreciated the revised CHW approach and the increased role that CHWs are now playing in promoting health-seeking behaviours and increasing health-related knowledge of community members. Community members were able to outline the main functions that CHWs support within their communities. These functions include providing health education, counselling patients, screening and referring patients to health facilities, following-up with and monitoring patients during pregnancy, acute conditions and chronic illness. Community stakeholders also directly link CHWs with decreased morbidity and mortality in their areas. For example, one respondent offered:
“Without CHWs, we could have high mortality rate, more especially on maternal deaths. CHWs encourage women to go to the waiting shelter when their delivery time is near.” Community Stakeholder-FGD-Chifunga
Linkage to a health facility
Through monthly home visits, CHWs conduct case finding in the communities mostly through verbal symptom screening. Patients who screen positive are referred and linked to medical care in the formal healthcare system. Study participants, including health care workers, reported that CHWs are productive at screening household members for various health conditions and accompaniment of identified clients to the health facility. By screening household members even before significant illness, CHWs enhance health-seeking behaviour and advocate for quick access to care for clients in the community. These actions help clients feel that there is someone who cares and will advocate for them and their family, which enhances interaction and builds trust between the household members and the CHWs. The following were some illustrative responses on how CHWs initiate interactions by linking clients to care:
“Yes, they link clients to care. For instance, last week, there was a client who came here Monday. He got sick on Friday, but the relatives were just keeping him. When the CHW knew that there is a patient at that household, he went there and brought the client here.” Clinician at Dambe health facility
“CHWs live closer to the households that they visit. So CHWs link us to the clients that require our help. When they suspect TB cases, they collect sputum and bring it to the hospital for testing ... Since they are closer to the clients, it becomes easy for them to assist clients in different aspects.” Medical attendant at Ligowe health facility
“…it took the CHW to link me to the hospital when I was too sick…it made me feel that I am also important, and I started interacting with other people since I was encouraged. So without the CHW, we could not know which direction to take.” Woman on Antiretroviral Therapy for more than one year- Zalewa
Linkage to social support
As CHWs conduct home visits in their assigned households, they also assess the household’s social and economic situation and then link those that are vulnerable to available social support programs in the district. PIH commonly provides social support to such clients in the form of cash transfers, house repairs and new construction, food or agricultural assistance, and sponsoring education requirements for the children. It has been noted that these efforts have not only contributed in enhancing the wellbeing of households, but also enriched the community connectedness through the support of needy community members and trust in the CHWs making connections between the households and social supports. Below are the experiences of some participants:
“I was very sick and nearly gone. My house was dilapidated such that people could not drink water at my house. When I gained strength and started walking, sometimes I would feel thirsty, and when I ask people to give me water to drink, they would use some old cups that they do not use [.. .]. When Partners In Health built a house for me, people started coming to see me, so I feel like this house enabled people to start interacting with me. I guess they saw that I am now important.” Woman on Antiretroviral Therapy for more than one year – Chifunga
“The help that I received was about my son. My CHW connected me to Partners In Health who gave a bursary to my son, and other children were receiving exercise books […] this strengthened the trust on my CHW even more.” M an on Antiretroviral Therapy and Non-Communicable Disease-Ligowe
Theme 2. Trust in CHW’s provision of care
Confidentiality is one of the core attributes of an effective CHW, as they have access to people’s medical information, including information that is often sensitive and private. In the FGDs and interviews, health care workers, patients and community members were asked about trust in CHWs as cadre of health care workers, who function outside the formal healthcare system and without formal training. Participants unanimously reported a high level of trust in CHWs, that CHWs keep patient information confidential and that CHWs are adept at working with clients. As a result, community members are willing to confide in CHWs.
Health care providers trust in and reliance on CHWs
Health care providers were asked to discuss their relationship and perspective on CHWs, including their willingness to share patient information with CHWs. They reported that they hold no reservations on sharing confidential patient information with CHWs, provided that the client has given consent. This confidential information includes program enrollment, patient status, type of medication, dosage and appointment dates. This information informs follow up actions by the CHW, including counseling on medication adherence, worsening or improving symptoms and psychosocial support in the home. Furthermore, the CHWs often accompany their clients to clinic visits and provide useful feedback on how the patient is responding to medications or the side effects that the client is experiencing to clinicians and nurses. This information allows for critical treatment and care decisions. Information that health care workers share with CHWs further assist the CHW cadre to actively follow up with clients with missed appointments or locate those whose test results are available and need action at the health facility. In summary, health care providers reported that CHWs handle patient information with confidentiality and support patients in receiving high-quality care in the formal health care system. As a result, they are a trusted cadre among the health care workers:
“Yes, they are a very trusted cadre. We have few staff at facility level, so we rely on them to link us to clients. They are like eyes, ears, hands, legs and a voice of those that work at facility level. Also, they are very good at keeping secrets in regard to patient information; hence we trust them.” A nurse at Ligowe health facility
“Without CHWs, it could have been difficult for the hospital to operate well as it is doing now comparing to the past when there were no CHWs working. For instance, with TB, CHWs help us find TB clients through community screening. When clients default CHWs also help us to trace them and bring them back into care.” A Medical Attendant at Chifunga Health Facility
“When we give pregnant women appointment dates, sometimes they forget to come, but CHWs remind them always to make sure that they do not miss their appointments. CHWs also escort them to ANC to make sure that they enroll within the first three months. Sometimes they give women referral letters when they want to see us, and we automatically know that they have come through the CHWs.” A nurse at Zalewa Health Facility
Trust in CHWs by community members
Community members were also asked how they felt about CHWs’ ability to provide health-related care and to maintain confidentiality. Respondents generally trusted CHWs to maintain confidentiality. Furthermore, they reported that they feel free to confide in CHWs because they regard them as a source of physical, social, and emotional help for the household. The respondents described strong connections with their CHWs and were comfortable engaging with them on highly sensitive and topics, including non-health issues such as family and community relationships. On health-related topics, community members report being openly honest with CHWs, and disclosing disease symptoms or challenges in accessing care or caring for their household. This openness allows clients to be screened and linked to the formal health care system in a timely manner – sometimes prior to overt symptomatology or severe disease – thus, improving outcomes. This experience enhances trust in the CHW’s ability to provide screening and care. Below are some quotes elaborating how trusted CHWs are:
“They keep secrets. They do not go about publicising people who are on ART; hence it is difficult for the community to know who is suffering from what hence it is difficult to discriminate each other.” Mother of an under-five baby - Chifunga
“Mmmmm I cannot hide anything from him. If I hide, then I can die. Even if it is about my marriage, I would still let him know. Because he is like my doctor so I am free to tell him whatever problem I can encounter.” Man with Non-Communicable Disease –Ligowe
But while the majority of participants expressed confidence in CHWs, a few participants mentioned that not every CHW is equally trusted. Lack of trust might occur either because a particular CHW was “talkative” and did not keep all information confidential, or because some community members are simply less willing to share personal details than others as quoted below:
“We had one who could reveal secrets when drunk but was counselled, and it has changed now…so you cannot confide in someone who doesn’t keep secrets, it’s double impossible.” Male Community Stakeholder, FGD-Ligowe
“Some do not trust their CHW not because they did something wrong, but they just don’t like sharing their personal information. Such people will even discourage others to confide in CHWs. So it’s just the mindset, not that they don’t keep secrets. We cannot rule out though that some don’t keep secrets, but it’s a very small percentage.” Health Surveillance Assistant at Dambe health facility
Theme 3. Equal treatment of community members by CHWs
Participants reported a decrease in discrimination and stigma with the transition to the household model. With all households receiving CHW services, there is not a way to distinguish between community member with a disease and a member who does not. Similarly, some participants reported no discrimination from fellow community members because the community is seldom aware of the condition they are suffering from. In this way, there were stronger linkages of trust between community members and households with CHWs because of perceived equal attention and treatment of all people in the district. The following are some representative responses on how CHWs treat their clients:
“The CHW treats us equally. Does not differentiate that this one is HIV positive, and this one is not. That makes us follow his example; hence there is no stigma and discrimination here. Sometimes she will even teach my relatives to treat me equally despite my condition, which also contributed to the good care that my relatives give me.” Woman on Antiretroviral Therapy for more than one year- Zalewa
“My relatives love me the same way even after the knowledge that I am now HIV positive. There were no traits of discrimination. Even the CHW treated me like my own sister. Now I even encourage my friends to go to the hospital citing my own example. The CHW showed a good example to my friends and relatives by being the first person to care for me.” Woman on Antiretroviral Therapy for more than one year - Zalewa
“The interaction was ok, but people were not aware that I am on ART. It was just between me and the CHW.” Woman on Antiretroviral Therapy for more than one year – Dambe
Although overall CHWs have a positive influence on how community and family members perceive those who are enrolled in chronic care programs, it was reported that teenage pregnancy remains to be a challenge for community members to accept without judgement. There are deep societal expectations that are placed on young women in rural Malawian communities and families, and adolescents often face discrimination if she becomes pregnant, especially if it happens outside wedlock and is in school. In such instances, an adolescent pregnancy often attracts discrimination, stigma and poor household and community coping as explained below:
“My parents are very harsh on me such that they shout at me every day saying I should refund the money that they have been spending on my school fees and pocket money. I stay with my stepmother since my mom went to Mozambique. They told me that I should be responsible for all the expenses on this pregnancy. Up to now, I am fetching for the labour materials on my own.” Adolescent pregnant woman – Dambe
Through FGDs and interviews, it was learnt that CHWs are yet to have little influence to alter some of the deep-seated cultural beliefs around some aspects of pregnancy. Pregnancy, especially in its early stages is a highly sensitive matter because it is believed that it can easily be lost through ill intentions of others. As such, most women are highly secretive about it and unwilling to disclose or discuss anything that will indicate that they are pregnant. This renders the pregnancy screening task by CHWs one of the most difficult tasks to achieve as clients will seldom cooperate as outlined in the below quotation:
“…about pregnancy screening, you feel like maybe she [the CHW] has a wrong motive behind [wants to bewitch you maybe] so it is difficult to be very open. Sometimes they will come early in the morning, and they ask you about menses. Even if I am menstruating, I don’t tell her because I don’t feel free to do so. Sometimes I lie just to do away with her.” Adolescent pregnant woman – Chifunga
Proper messaging to communities from CHWs
Respondents reported that CHWs disseminate powerful messages in the communities and households. They start with psychosocial support at the individual level, encouraging clients to accept screening and referral. If diagnosed, CHWs also provide support to clients with chronic disease on successful management for a high quality and productive life. The CHWs will assist clients, especially in their first year of treatment, to remember to take medications, monitor for side effects and accompany the client to the clinic. At the community level, they share messages of hope for those that have lost hope, love for those that feel lonely, and peace for those that are troubled in their hearts due to their current condition – whether emotional, medical or social. They build trust in the CHW cadre, in people’s ability to gain access to medical care and social support and live healthy lives, and in the community to come together to support each other. This support and positive messaging have encouraged community members to think of themselves as “brother’s keepers” and live in greater unity. For example, CHWs have encouraged other community members visit and assist each other when one is sick or is faced with other problems:
“Previously, people were discriminating each other, but with the messages that CHWs have disseminated, people have accepted that everyone can get sick and they are able to live together with their relatives.” A Health Surveillance Assistant at Ligowe health facility
“He [the CHW] advises us that we should not be idle and sad. We should interact with our friends in different groupings. He says we should not separate ourselves from other people. People should not tell that this one is HIV positive. Other people are also taught that do not discriminate those that are HIV positive. It is not that they will die, they are the people that will help you in future when you have problems. Therefore this is achieved through talking to the people on the same during home visits.” Woman on Antiretroviral Therapy for more than one year – Dambe
“CHWs have enhanced relationships between chiefs and their people as they link them through different forums. They encourage us to love each other during problems and otherwise. CHWs have helped us to coordinate with our neighbours, for instance, when someone is sick we organise to go to the hospital as a team, and then the CHW follows us later.” Female Community Stakeholder, FGD -Chifunga
CHW role modelling for community members
CHWs were heralded as role models for unprejudiced interfaces in their communities with a positive outlook and messaging, leading many in the community and the households they serve to emulate them and encourage others to follow. Many participants reported improved interaction between themselves, their families, friends and community at large with the transition to the household model. When asked what the CHW exactly does to influence these interactions and community unity, respondents gave such answers:
“I feel like by visiting me now and again, she was setting a good example to other people. She could treat me like her relative.” Man with Non-Communicable Disease – Zalewa
“The relationship with my relatives has improved. In fact, this is good that everyone is being visited and people are not suspecting that the other one is positive since they are also visited. So by visiting everyone, the CHW is setting a good example to others.” Man on Antiretroviral Therapy and Tuberculosis-Ligowe