Acceptability of Mobile Phone-Based Nurse-Delivered Counseling Intervention to Improve HIV Treatment Adherence and Self-Care Behaviors Among HIV-Positive Women in India

Design and sample

We conducted open-ended, in-depth interviews with 27 HIV-positive women and 19 key informants at a government-run ART center in the Belgaum district located in the state of Karnataka in southern India. The HIV prevalence is high in Belgaum (>1%) and the epidemic is characterized by higher incidence among women. The center caters to socially disadvantaged, low-income HIV-positive patients. ²² The clinic enrolls at least 8–10 new HIV-positive people daily, 50% of whom are HIV-positive women (personal communication with Karnataka Health Promotion Trust, a local NGO working with HIV-positive people).

The study received approval from the ethics committees at Yale University, New Haven, CT, and the National Institute of Mental Health and Neurosciences (NIMHANS) in Bangalore, India. All eligible participants were informed of the study objective and invited by a trained study staff to participate in this study. Participants were enrolled if they provided written informed consent and met eligibility criteria. Patient participants were HIV-positive women aged 18 years and above, formally enrolled in, or eligible to initiate, ART, and, able to communicate in Hindi, English, or Kannada (native language in Karnataka). Stakeholders were: (1) healthcare providers (HCPs) at the HIV testing and ART centers, and (2) family members or friends accompanying an HIV-positive woman in the center, but not necessarily of the women who were participants in the study.

Interview procedures

Structured, open-ended interviews were conducted in a private setting by trained Master's level research assistants under the supervision of the site principal investigator. Participant interviews assessed their medical history and beliefs (e.g., need for and desire to take antiretroviral medication), sources of support and barriers to self-care activities, access to care, phone ownership and usage, and attitudes and preferences concerning intervention content and delivery. Contents of topic guides were viewed by experts in HIV-positive women's health in the United States and in India to establish face validity and cultural relevance.

Data analysis

The interviews were recorded, transcribed verbatim, and translated into English. Two bilingual research staff randomly selected 10% of transcripts to check for accuracy in comparison with their respective audio files, and likewise compared 10% of translated text with their respective transcripts. Data were explored using applied thematic analysis. ²³ We developed a codebook based on a priori codes derived from the topic guides and existing literature on acceptability and use of mobile phone-based interventions to improve ART adherence.

In addition, inductive/emergent codes and categories identified from the text were added to the codebook, which was then used to further code and categorize the data. Differences in coding were discussed among data analysts and resolved by consensus. Constant comparative method was used to compare and contrast the codes/categories within and across cases. ²⁴ An analytic thematic approach was used to further identify linkages between the categories and derive subthemes, which were further collapsed under broader themes to describe the acceptability of mobile phone-based counseling for ART adherence and self-care may be impeded or facilitated. Data analyses were informed by application of relevant concepts from self-regulation theory and the technology acceptance model (TAM). ^{20,25 –28}

Sociodemographic characteristics

As seen in Table 1, the HIV-positive women participants' mean age was 35 years [standard deviation (SD) = 8]. More than one-third (37%) were currently married, about half (48%) were illiterate, and about three-fifths (59%) were unemployed. Eighty-one percent reported that their husbands were also HIV positive. More than two-thirds (70%) reported having disclosed their HIV status to others; however, the majority of the disclosures were only to their immediate family members. There were 19 key informants. Two of the nine HCPs were physicians, the rest were either HIV testing or ART counselors. The majority (n = 7/9) had over 5 years of experience in HIV service provision. Among the 10 family members who accompanied HIV-positive women, 8 were women who were mothers, daughters, daughter-in-law, or mother-in-law; and 2 were men—a maternal uncle and a brother. Overall, the mean age of the family members was 30 years (SD 10.7).

Current use of mobile phones

About half of the HIV-positive women participants (n = 14/27; 51.9%) reported having a personal mobile phone; others had access to a mobile phone of their family members and a few did not have any access. Some of the women reported that they could receive calls but did not know how to make calls. Similarly, not all of the women were aware of how to send a text message or how to read one.

Barriers and facilitators to timely visits to ART center, and ART adherence

HCPs reported that most of the HIV-positive women on ART were adherent to their regimens. Eight main themes concerning barriers to care and seven themes concerning facilitators of care emerged from the data. Themes and their exemplars are summarized in Table 2.

The key reasons cited for nonadherence or lost-to-follow up were: placing priority on the well-being of family members over one's own health, financial dependence on others, and nondisclosure of HIV status to family members. Similarly, many HCPs believed that HIV-positive women were more likely to face problems in adherence and regular visits to ART centers when compared with men.

Several facilitators for timely visits to the government ART center were reported by the participants. Key reported reasons were provision of free ART through government ART centers and reimbursement of their travel costs to reach ART centers. In addition, many women expressed satisfaction with the services they received from the government ART centers and reported that HCPs furnished necessary information about HIV and ART. Some women, however, reported several barriers for timely visits to the ART center. A key barrier was non-disclosure of HIV status to their family members as it meant that many women needed to visit the ART center without the knowledge of family members. On the other hand, even if the women's HIV status was already known to other family members, they often suffered lack of support from the family members. This was commonly in the form of blaming the woman for bringing HIV infection to the family despite having acquired HIV infection from her husband and delay in providing money for travel to the ART center, which sometimes prevented the women from collecting ART on time.

The women outlined several factors that facilitated ART adherence. Determination to live for one's children was a common theme. Adherence to ART was also better among women who believed that ART was beneficial since they could witness increase in their body weight and in their ability to do work, including routine household chores. Adequate knowledge about HIV and fear of consequences of nonadherence also aided adherence. Tactics like having a fixed daily routine for taking tablets for instance, at 9 am and 9 pm, and packing enough pills when going to stay outside one's hometown helped some women improve adherence. Family members' support in the form of reminders was also helpful in some instances. Yet even those women who had not disclosed their HIV status to other people adopted some strategies to help them in taking ART without fail. These included lying to others that they routinely took “vitamin pills” or that they take pills “to increase the amount of blood,” removing the name label in the ART bottle, transferring pills to a different container, and hiding pills in inaccessible places.

Nevertheless, women reported certain barriers to adherence as well. Women who were relatively less educated or were illiterate reported inadequate knowledge about ART and missed pills. For instance, one person admitted that she did not know the benefits of taking ART and hence was not sure whether to continue the pills or not. Another person bluntly stated that as she was an illiterate she could not understand why and how long to take ART. Moreover, giving priority to the health of husband and children and not taking care of one's own health was another reason identified by the women, which was corroborated by HCPs as well. Even though not explicitly stated by women, mental health issues faced by them clearly seemed to affect their ability to be adherent. Indeed, some of the concerns reported by women were: anxiety about their children's future, for example, their education and marriage; fear of disclosure of one's HIV status to others and potential negative consequences to self and other family members—especially children; financial burden due to HIV-related treatment costs for self and other family members; and needless fear of transmission of HIV to other family members from casual contact. For those women who were on both ART and some other drugs, such as antidepressants or antituberculosis drugs, adherence to ART was difficult due to high pill burden and associated side effects.

Patients' perceptions of use of mobile phones for ART adherence and health promotion

In general, HIV-positive women thought that the use of mobile phones would be beneficial to them as they could then clarify their doubts over phone, ask for any new information they needed, and have someone to talk to whom they could trust (Table 3). Receiving mobile phone calls was acceptable to most of the women as they felt that the time available in one-on-one interactions with the HCPs at the ART center was limited. Besides, while in ART centers, women too were in a hurry to leave as they had to get back to their homes quickly before someone else in their home began suspecting where they had been especially so in the case of women whose HIV status was not known to other family members. Information and counseling over phone was appealing to women as they viewed it as personalized care and a convenient mode of getting information on demand. Furthermore, some women thought that they would be more comfortable asking for certain apparently sensitive information by phone that they would otherwise hesitate to ask in person, such as condom use, getting remarried to a HIV-negative man, and the possibility of HIV transmission if one cooks for her family. Only one person explicitly preferred face-to-face discussion rather than mobile phone, but she too was receptive to receiving once-a-month phone call from a HCP.

Most of the women were of the view that as they were already adherent to ART, the mobile phone communications would, in fact, be more helpful in discussing mental health issues. There were a few who did not give much importance to health promotion messages over phone, adding that their chief priority was obtaining assistance for supporting their children's education or getting financial assistance for their family members, for example, for marriage of their daughters.

Women differed in their preference for receiving calls from a HCP, making calls to a HCP or both. Among the 25 of the 27 women who responded, 50% preferred receiving calls from a nurse, whereas just 8% preferred making calls to the nurse, and 38% opted for both. Two women, however, did not prefer receiving any calls from HCPs. Women who had their own mobile phones or whose HIV status was known to most of their family members thought it was acceptable to either receive calls from HCPs or to call HCPs; by contrast, those whose HIV status had not yet been disclosed to their family members preferred to make calls to HCPs.

The women also expressed preferences regarding the frequency of phone calls that ranged from a few calls a week to one or two calls a month; and also regarding the timing of the calls. Specifically, many preferred to be called in late evenings, especially if they worked, or shared their family member's mobile phone. Furthermore, the women expressed concerns about the possible risk of their HIV status being inadvertently disclosed to their family members or neighbors when the calls would be made, and about the possibility of being gossiped about for receiving calls from nonrelatives. They also offered suggestions on what to do if someone else other than the intended person answers the phone. For example, in such a case the caller could tell the other person that she was a friend of the woman whom she had called. Participants preferred to receive calls exclusively from women HCPs to call them.

Providers' and family members' perceptions of use of mobile phones for ART adherence and health promotion

In general, HCPs and family members opined that receiving information and counseling from nurses through mobile phone calls would be useful to improve the mental health outcomes of HIV-positive women who would find it “good to talk to someone.” Five themes emerged from their perceptions regarding the potential usefulness of mobile phone for promoting health of HIV-positive pregnant women (Table 4).

HIV-positive women's acceptance in receiving mobile phone calls seemed to be facilitated by prior trust in HCPs, perceived competency of HCPs in dealing with mental health issues, and perceived need for the support for mental health promotion. Family members expressed their willingness to lend their phone to their HIV-positive female family member, but suggested that calls be made in the late evening once they returned from work. Also, they did not object to the idea of providing a mobile phone to their HIV-positive family member for personal use. As nurses were expected to be receiving and making calls to HIV-positive women in the planned intervention, some doctors were concerned about the additional burden on nurses. Moreover, nurses worried about the risk of receiving calls from women even for “trivial matters.” In other words, nurses anticipated there might be a lower threshold in contacting a provider over phone, and possible psychological dependence of the HIV-positive women on them. Thus, HCPs offered some suggestions, including restricting phone calls from women to office hours or setting a maximum limit to the number of calls to be made or to be received per week or month.

HCPs also suggested that before the start of phone counseling interventions that consent should be obtained from other family members, explicit preference of patients should be determined with respect to whether they would like to only receive calls, make calls, or both; nurses and patients should agree on the frequency of calls to be made or received, and on the appropriate time to call; and a protocol should be used to maintain patient confidentiality.

Summary and unifying framework

Taken together, the data establish the significance of several factors associated with the acceptance of an mHealth intervention and its potential for enhancing engagement in care among women living with HIV in India as summarized above. The process by which the factors interact to drive outcomes can be understood within an adapted model (Fig. 1) that provides a dynamic, unifying framework. Self-care behavior of the individual living with HIV is essential to the effectiveness of HIV treatments since most of the day-to-day management takes place outside of healthcare settings. A host of research conducted by Leventhal et al. has shown that the way in which individuals interpret or make sense of their illness (illness representation) drives self-care behaviors such as adherence to medication. Illness representations are highly individual, influenced by a host of internal and external information that are often ambiguous, fluctuate daily, and are affected by situational variation. ^25,29,30 They may or may not be compatible with medical norms and influence how new health information is processed and acted upon. At the most basic level, the individual's sense of self, who she is in relation to the world, develops through physical and psychological capacities and vulnerabilities (physical–mental health) in interaction with her social circumstances. The social circumstances obviously vary by the cultural and socioeconomic environment as well as by a host of commonplace and chance events that occur over the lifetime. These operate to shape an individual's perceived options and expectations, which in turn influence the moment-by-moment interpretation of stimuli and selection of self-regulating actions. The individual interprets stimuli and acts to maintain or enhance an acceptable or desirable status or avert or reduce a stimulus that is interpreted as unacceptable or undesirable. The individual considers his/her options and selects an action based upon his/her perception of viable options and past successes and failures under similar circumstances. ^25,30,31

OPEN IN VIEWER

FIG. 1.

Conceptual framework.

An mHealth intervention may provide an efficient and acceptable way to reach women to promote self-care behavior. Drawing from this model, a central element of the potential efficacy of the mobile phone intervention is how the woman comprehends her illness in the context of her life circumstances (sociocultural milieu), experiences and perceptions of the potential benefits of technology-facilitated support from a HCP. While the process is highly nuanced and individualized, our findings indicate that several factors will be central to the acceptability and usefulness of an mHealth intervention to vulnerable women living with HIV. These include the individual's perceptions of its usefulness in the context of her knowledge of HIV and ART, financial circumstances, and sociocultural context (e.g., perceived stigma and quality of interpersonal relationships), priorities, and preferences.