Exploration of Concordance Behavior between Tuberculosis Patients, Families, and Healthcare Workers in Supporting Treatment Adherence: A Qualitative Study

2.1. Research Design

This study employed a qualitative approach with a phenomenological study design. The phenomenological approach was chosen to capture the subjective experience and meaning given by the participant to the interactions and communication that occurred during the treatment process. The 32-item Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist was followed for reporting [22].

2.2. Setting

The study was conducted at 3 primary health cares (PHCs) with low cure success rates in Padang City that treated TB patients from September 2023 to June 2024. These PHCs provide TB services, including medical consultations, laboratory tests, and drug distribution. Participants were patients who were undergoing treatment, families involved in patient care, and health workers who were responsible for accompanying patients in treatment.

2.3. Participants

(1) Participants in this study consisted of approximately 10 individuals across three groups: TB patients: Adult patients who have been on treatment for at least one month are selected purposively to ensure they have sufficient experience in communicating with family and healthcare workers regarding TB treatment.

(2) Patient Family: Family members who are directly involved in supporting the patient's treatment, such as a spouse, parent, or adult. They were selected based on their direct involvement in the care and treatment of patients.

(3) Health Workers: Doctors and nurses who are directly responsible for providing treatment and accompanying TB patients.

2.4. Recruitment

Participant recruitment was carried out through a direct approach by researchers at the health facility where the study was conducted. Healthcare workers helped identify patients and families who met the inclusion criteria. The researcher then explained the purpose of the study and obtained written consent after providing complete information to potential participants. No one refused to participate in the study. The sample selection in this study was purposive, with the objective of ensuring the representation of the three main groups that play a role in TB treatment: patients, families, and health workers. Variations in participant characteristics, including age, gender, and socioeconomic background, were considered to obtain a comprehensive perspective. The data obtained has reached saturation, characterized by the absence of new themes emerging after the last interview and the consistency of findings obtained from various data sources, including patients, families, and health workers. Additionally, a data triangulation process was conducted to ensure the validity and credibility of the research findings.

2.5. Data Collection

Data were collected through semi-structured interviews with three groups of participants: TB patients, their families, and health workers. Interviews were conducted face-to-face in a private room agreed upon by the participants in PHC. No one else was present besides the participants and researchers. Each interview lasted 30 to 60 minutes and was recorded using a digital voice recorder. We used field notes for capturing contextual details, non-verbal cues, and researchers’ reflections. Interview transcripts were saved for further analysis.

Interviews were conducted by the first author (RP), a PhD candidate of the Faculty of Medicine, Andalas University. He is a pulmonologist with a background in qualitative research and training in in-depth interview techniques.To maintain objectivity and reduce potential bias, researchers took a neutral approach during the recruitment and interview process. The researcher introduced himself as a doctoral student and explained that the study was part of an academic study, regardless of the health service institution where the research was conducted. Before starting the interview, the researcher provided time to talk to the participants, explain the objectives of the study, and clarify that there was no direct relationship between the study and the medical care that the participants were undergoing. This to build trust and create a comfortable atmosphere, allowing participants to share their experiences openly without fear or pressure. During the interviews, researchers maintained open and empathetic communication but avoided emotional involvement or providing medical advice that could affect participants' responses. The researcher also underlined that all information provided will be kept confidential and will not affect the health services received by participants. When no new codes could be created, the data was said to be saturated. We carried out two additional interviews to ensure data saturation.

2.6. Data Analysis

The data were analyzed using a thematic analysis approach, following the procedure from Braun and Clarke (2006) [23]. Interview transcripts were verbatim transcribed and analyzed using the qualitative analysis software NVivo. The analysis process included the following steps:

2.7. Data Validity

To increase the credibility of the results, several techniques are performed, including:

3.1. Understanding of Concordance

Most of TB patients and family members do not understand concordance as a form of partnership that is equal to that of patients. Only a few healthcare workers know it, but they do not have a comprehensive understanding.

Some TB patients and family members said that:

“Never, sir. So, I do not know yet.” (P1)

“It seems that this concordance has never been heard, so I do not know what this is.” (P2)

“I've never heard of concordance, so I do not know what this is.” (F1)

“The doctor said I had to take medicine until I recovered, but I did not really understand why it had to take so long. I feel like I've improved after a few weeks.” (F2)

Families also revealed that sometimes, the information presented by health workers is not clear enough. One of the families said:

“We heard about TB and how the drug should be spent, but it wasn't told in an easy-to-understand way. There are many medical terms that we find difficult to understand.” (F2)

Healthcare workers acknowledge that there is a limited time when providing explanations, particularly when dealing with many patients. Some healthcare professionals feel that this communication limitation reduces their effectiveness in supporting patient medication compliance. One of the healthcare professionals said:

“Well, because of the limited time, we often must rush through important information. Ideally, we would like to sit down with each patient, understand their concerns, and explain everything clearly, but that’s not always possible. This can make it difficult to ensure that patients fully understand their medication regimen.” (H3)

3.2. The Role of the Family in Medical Communication

The family plays an important role in supporting patient medication compliance. Many families actively communicate with patients to remind them of their medication schedules and support patients emotionally. One of the patient's family said:

“I always remind my brother to take medicine according to the time given by the doctor. Sometimes I have to remind him, because he likes to forget.” (F1)

However, some patients feel pressure from family members regarding treatment, which sometimes worsens their experience. Another patient’s family said:

“My family is always worried, but the way they force me to take medication actually makes me stressed. I know they care, but sometimes I need space.” (P2)

Healthcare workers also acknowledged the important role of the family in supporting patient communication and compliance, but emphasized that family involvement must be managed carefully to avoid placing excessive pressure on patients. One of the healthcare workers said:

“Yes, definitely. While family support is crucial, it needs to be balanced carefully. Sometimes, family members can unintentionally put too much pressure on the patient, which can lead to stress or even resistance. Patients need support, not control.” (H2)

3.3. Communication Barriers

Some of the communication barriers identified in this study include differences in understanding between patients and healthcare workers, lack of time for education, and stigma associated with TB. Patients from low socioeconomic backgrounds reported difficulty understanding medical terms conveyed by healthcare workers, leading to confusion about treatment.

One patient revealed:

“Sometimes I don't really understand what the doctor says. Too fast, too much information that I don't understand.” (P1)

TB-related stigma also affects communication between patients and families. Some patients choose not to open up about their illness to other family members for fear of being ostracized. One of the patients said:

“I didn't tell other brothers. They may not want to get close to me if they know I have TB.” (P2)

Health workers are aware of this stigma problem, and some of them are trying to overcome it by providing education to families and communities. However, stigma remains a significant barrier to open communication. One of the health workers said:

“One of the things we try to do is provide education, both to patients and their families, as well as the wider community. We explain the nature of the condition, how it can be managed, and the importance of seeking help early. Education helps reduce misconceptions and fosters a more supportive environment.” (H4)

3.4. Effective Communication Strategies to Support Concordance

In the face of various communication challenges, patients, families, and health workers have identified several strategies that are felt to be effective in improving concordance: —ongoing education and strengthening understanding through regular visits to be helpful.

One patient stated:

“Every time I come for control, I always remember why it's important to take medication. The doctor always reminds me, and it helps me a lot.” (F1)

Health workers also mentioned the importance of involving families in the patient education process so that they can help monitor medication compliance at home. The use of media such as brochures, educational videos, and digital intervention in the clinic is considered effective by some patients because it provides easy-to-understand explanations.

One of the health workers explained:

“We started using short videos to explain about TB and how to treat it. This helps because the patient can see and hear the information many times, and the family also watches.” (H5)

The findings of this study show that communication between patients, families, and health workers plays a key role in supporting the concordance of TB treatment. However, there are several significant obstacles, such as differences in understanding, stigma, and time limitations owned by health workers. Participants also highlighted the importance of family involvement and ongoing education as key strategies to improve medication adherence.

4.1. Understanding of Concordance

Findings from this study revealed a heterogeneous quality of medical communication between healthcare providers and Tuberculosis (TB) patients. A subset of patients expressed a limited comprehension of the extended duration and significance of TB treatment. These results align with existing literature demonstrating the frequent insufficiency of patient understanding of TB treatment, particularly in the context of intricate treatment regimens and the utilization of unfamiliar medical terminology [24, 25, 26]. A significant barrier to ensuring patient comprehension of the importance of treatment adherence was identified as the limited time available for healthcare providers to deliver comprehensive education [27]. Consequently, a more robust approach to patient education is warranted, encompassing both verbal instruction and accessible media formats, such as brochures, videos, or digital resources, to facilitate ongoing patient understanding.

4.2. The Role of the Family in Supporting Compliance

The family plays an important role in supporting the patient's medication concordance, especially in reminding the patient to take medication and providing emotional support. The role of the family in this context is in line with the literature that emphasizes the importance of social support as a determining factor for the success of TB treatment. However, the study also found that family involvement can create stress in patients, which sometimes contributes to increased stress [28]. This pressure, if not managed properly, can trigger resistance from patients to treatment, especially if they feel their personal control over their health is being taken away. Therefore, health workers need to educate not only patients but also families, on how to support patients in a non-invasive way and respect patient autonomy.

The importance of family support extends beyond mere adherence to medication. It also encompasses the overall well-being of patients. Emotional support from family members has been shown to enhance patients' motivation and resilience, which are critical for navigating the challenges of TB treatment [29, 30]. Furthermore, studies have indicated that patients with larger family networks tend to report higher levels of social support, which correlates with better treatment outcomes [31, 32]. This aligns with findings from Zhang et al., which emphasize that psychological support from family members can help patients overcome the stigma and fear associated with TB, reinforcing their belief in the treatability of the disease [33]. This underscores the necessity of integrating family dynamics into TB treatment strategies, as a supportive home environment can significantly influence patient behaviors and treatment success.

4.3. Communication Barriers and Stigma

Communication barriers found in this study, including differences in understanding, time limitations of health workers, and social stigma, have been extensively documented in the TB-related literature. One of the barriers that is often overlooked is stigma, which was found in the study to affect both patients' open communication with their families as well as patients' willingness to engage in long-term treatment. TB-related stigma often causes patients to hide their disease or avoid follow-up treatment, ultimately negatively impacting treatment outcomes [34]. The stigma surrounding TB often leads to social isolation, discrimination, and a reluctance to seek medical care, which can exacerbate the spread of the disease and hinder effective treatment [35, 36]. Interventions to reduce stigma, such as public awareness campaigns, should be considered as an integral part of strategies to improve concordance. Implementing health education programs can enhance understanding of TB while training healthcare workers to convey anti-stigma messages effectively is crucial [37]. Additionally, fostering open discussions in healthcare settings can help mitigate power dynamics and encourage collaboration. Support groups for patients and families can also provide psychosocial support, reducing stigma and improving communication pathways within the healthcare system [38, 39].

4.4. Communication Strategies to Improve Concordance

The study also identified several effective communication strategies, such as continuing education and the use of visual media to help patients and families understand the importance of treatment. These strategies have been shown to be effective in other studies, where continuing education tailored to the patient's needs and direct family involvement in treatment have been shown to improve adherence. The use of educational videos in clinics can also be a very useful tool to bridge the gap in understanding between health workers and patients, especially for those who have low health literacy. Research indicates that patient adherence to TB treatment is significantly influenced by various psychosocial factors, including the quality of communication between healthcare providers and patients. For instance, a study by Wahyuni et al. emphasizes the importance of establishing effective communication based on partnership, openness, empathy, and support, which can enhance concordance among TB patients [40]. This aligns with findings from Motappa et al., who identified that patients' perceptions of treatment length and drug efficacy significantly affect their adherence to anti-tubercular regimens [41].

The findings of this study have important implications for improving communication strategies in the health system. First, a more personal and holistic approach is needed in communication between health workers, patients, and families. Given the limited time of healthcare workers, service providers should consider using communication aids such as brochures and videos that are simple and easy to understand to support patient education. Second, training for health workers on how to communicate effectively and sensitively with patients and families about TB and the importance of medication adherence should be strengthened. Third, campaigns to address TB stigma in the community need to be expanded to create a more supportive environment for TB patients.

This research has several limitations. First, the study was conducted in only one location, so the findings may not be fully generalizable to other regions or populations with different socio-economic characteristics. Second, this study used interviews that may be influenced by memory bias or participants' desire to provide answers that they consider desirable. Future research could expand its scope by involving more research sites as well as more diverse data collection methods, such as participant observation.