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. Author manuscript; available in PMC: 2020 Sep 14.
Published in final edited form as: J Assoc Nurses AIDS Care. 2020 Mar-Apr;31(2):145–156. doi: 10.1097/JNC.0000000000000157

Iterative Development of an mHealth Intervention to Support Antiretroviral Therapy Initiation and Adherence Among Female Sex Workers in Mombasa, Kenya

Frances M Aunon 1,*, Elena Okada 2, George Wanje 3, Linnet Masese 4, Thomas A Odeny 5, John Kinuthia 6,7, Kishorchandra Mandaliya 8, Walter Jaoko 9, Jane M Simoni 10,11, R Scott McClelland 12
PMCID: PMC7490115  NIHMSID: NIHMS1583511  PMID: 31868829

Abstract

Nurses have an integral role to play in achieving the 95–95-95 goals to stem the HIV epidemic. We used the Information–Motivation–Behavioral Skills (IMB) theoretical model to develop a nurse-delivered, mHealth intervention to support antiretroviral therapy adherence among female sex workers living with HIV in Mombasa, Kenya. Twenty-three purposively sampled female sex workers living with HIV participated in 5 focus group discussions to iteratively develop the message content as well as the format and structure of the nurse-delivered, text-based intervention. Focus group discussion interview guides were developed in accordance with the IMB model. Transcripts were analyzed according to IMB themes, and findings were used to develop the intervention. Information-oriented texts addressed concerns and misconceptions; motivation-oriented texts reinforced women’s desires to feel healthy enough to engage in activities; and behavioral skills-oriented texts included strategies to remember medication doses. The nurse-delivered, theory-based, culturally tailored intervention to support medication adherence was evaluated.

Keywords: ART, adherence, female sex workers, HIV, mHealth, task-shifting

Female sex workers (FSW) bear a disproportionate burden of HIV infection and have been identified as a key population for HIV prevention (Garrett et al., 2017). Improving HIV prevention and treatment support to key populations is necessary to achieve the 95–95-95 goals and stem the HIV epidemic (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2014; Sanne et al., 2010). In Kenya, FSW represent approximately 1% of the population and 5% of women of reproductive age, yet account for more than 14% of new HIV infections (Odek et al., 2014; Joint United Nations Programme on HIV/AIDS, 2013). Antiretroviral therapy (ART) is highly effective, reducing morbidity, mortality, and the risk of transmission of HIV (Cohen et al., 2016; Granich, Gilks, Dye, De Cock, & Williams, 2009; Richman, 2018). However, the success of treatment requires high levels of adherence (Bangsberg et al., 2001; Haberer et al., 2017). A recent review found that 76.2% of FSW from low- and middle-income countries reported adequate levels of ART adherence (Confidence Interval [CI]: 67.8–83.0; Mountain et al., 2014). Social and structural barriers may limit FSW abilities to adhere to ART, highlighting the need for interventions directly supporting adherence in this key population (Mountain et al., 2014). Few interventions have been developed with the input of FSW. Rather, the majority were developed for other populations and later adapted (Moore et al., 2014). Some research suggests FSW do not respond as well to current HIV prevention interventions targeted to the general population (Mountain et al., 2014).

Mobile health (mHealth) interventions have been identified as an innovative approach to facilitate ART adherence and viral suppression. Two early mHealth interventions found that text messages could improve rates of viral suppression for people living with HIV (Lester et al., 2010; Pop-Eleches et al., 2011). Although initial mHealth studies were promising, recent evidence has been more mixed, with some studies showing a benefit and others showing no impact of mHealth interventions (Linnemayr et al., 2017; Shet et al., 2013).

Incorporation of a theoretical framework may influence intervention efficacy (Bull & Ezeanochie, 2015). Health behavior theories can help explain the mechanisms through which an intervention is effective, and evidence suggests that interventions developed according to a theoretical framework may be more effective than interventions developed without a theoretical framework (Chi & Stringer, 2010). Although many mHealth interventions have cited a theoretical framework (Simoni, Aunon, & Ronen, 2018), only a few have provided a detailed description of how the health behavior theory was integrated throughout the development and implementation of the intervention (Hall, Cole-Lewis, & Bernhardt, 2015; Michielsen, Chersich, Temmerman, Dooms, & Van Rossem, 2012; Odeny et al., 2014).

In the absence of a clearly defined theoretical framework for initial studies demonstrating the efficacy of mHealth interventions to improve ART adherence (Lester et al., 2010), it is necessary to understand the mechanisms through which the interventions effectively influenced ART adherence. One such hypothesis is that text messages may have functionally motivated ART adherence. Thus, incorporating theoretical frameworks that improve motivation may be more effective than interventions that do not leverage motivation.

The Information–Motivation–Behavioral Skills (IMB) theoretical framework has been used to explain HIV risk and ART adherence (Ajzen & Fishbein, 1980; Bandura, 1994; Fisher & Fisher, 2000; Starace, Massa, Amico, & Fisher, 2006). One aspect that differentiates the IMB theoretical framework from other health theories is the emphasis placed on motivation as a determinant of behavior that is amenable to change (Fisher & Fisher, 1992). Based on our previous work and other mHealth trials, we hypothesized that successful interventions improve adherence by enhancing motivation to take ART because text message recipients feel cared for by nurses. The intervention also allowed nurses to provide information and coaching on behavioral skills to support adherence.

Given the scarcity of interventions developed by and for women living with HIV (WLWH) who engage in sex work and the lack of literature detailing the development of mHealth interventions, we present the qualitative research, analysis, and development of the Motivation Matters! intervention. Guided by the IMB theoretical framework, the intervention was iteratively informed by FSW living with HIV who we hope will benefit from the intervention. The interactive text message–based intervention to support medication adherence in FSW initiating or changing ART regimens was conceptualized in accordance with IMB theory.

Methods

Three qualitative focus group discussions (FGDs) were conducted with WLWH who engaged in sex work and who were engaged in care at the Ganjoni Clinic in Mombasa, Kenya. The WLWH were purposively selected to include those who were and were not currently taking ART. Women were all older than 18 years and had individually consented to participate in FGDs with other FSW living with HIV.

The purpose of the FGDs was to identify themes to inform development of the nurse-delivered mHealth intervention to improve ART adherence and viral suppression. Following the IMB model, FGDs were structured to identify information and misconceptions that may have influenced adherence (including common perceptions of ART and sources of ART information), highlight sources of motivation (including sources of motivation and perceptions of clinic staff), and elicit effective behavioral skills that affected ART adherence (including common adherence challenges and responses). The facilitators for the FGDs also solicited feedback about the feasibility of the intervention, including the acceptability of sending intervention messages to cell phones, recommendations for the frequency and timing of message delivery, and concerns about confidentiality. The FGD interview guide was developed in collaboration with the clinic staff and nurses before implementation.

All FGDs were facilitated by a Kenyan social scientist with experience in qualitative interviewing and focus group facilitation and were held in a private room at the Ganjoni Clinic. The groups were stratified by ART status and included one FGD with ART-naive women and two FGDs with women on ART. Women were grouped by ART use to ensure that concerns of treatment-naive patients were incorporated in addition to the perspectives of women already on treatment. All FGDs were audio recorded, transcribed, and translated. Transcriptions were reviewed by author GW and compared with the audio recordings to ensure there was no loss of meaning through translation. To protect the women’s anonymity, names were not included on any of the digital recordings or transcripts. All data were stored on encrypted and password-protected computers and servers.

Transcripts were uploaded and analyzed using Atlas.ti 7.5.2 (2012). Authors FMA, GW, and EO coded and analyzed the data using a directed approach according to the IMB model (Hsieh & Shannon, 2016). Subthemes were identified within the information, motivation, and behavior skills constructs (Corbin & Strauss, 2008). Common concerns, misconceptions, and recommendations expressed by participants in the FGDs informed the initial development of text message content, personalization, and structure. All text messages related to themes of information, motivation, and behavioral skills related to ART adherence.

After the initial drafting of text messages by the study team, women from the first three FGDs were invited back 12 weeks later to review the content in two follow-up FGDs. During follow-up, facilitators presented text messages on large poster boards and edited messages based on the women’s feedback, emphasizing impact, clarity, relevance, and acceptability. Given the highly interactive and conversational nature of these discussions, these two FGDs were not transcribed or translated (Simoni et al., 2019).

All research procedures were approved by the human subjects research committee of the University of Washington, Seattle, Washington, USA, and by the Kenyatta National Hospital—University of Nairobi Ethics and Research Committee in Nairobi, Kenya. All participants provided written informed consent and were reimbursed KSh 250 (~$2.50 USD) at each FGD for transportation costs and time.

Results

A total of 23 women participated in three FGDs to inform content development for the first draft of text messages for the nurse-delivered mHealth intervention; 17 of the women returned to review the content of the text messages in two follow-up FGDs. The median age of the entire sample was 46.2 years (interquartile range [IQR] 40.5–50.0), and they had a median of 7 years of education (IQR 5.5–9.0). Sixteen women (70.0%) were taking ART, with a median of 6.0 years (IQR 3.8–9.0) on treatment. The majority of women were Christian (n = 22, 95.7%). Most were either widowed or divorced (n = 18, 78.3%).

Paralleling the structure of the FGDs, results have been organized by the themes of information, motivation, and behavioral skills. These thematic sections are followed by a summary of the women’s feedback regarding the feasibility of the nurse-delivered mHealth intervention. The final section of the results explains how the intervention was structured based on feedback from the FGDs.

Information About and Attitudes Toward Antiretroviral Therapy

Women in the study were asked to highlight common attitudes toward ART and identify any personal or community concerns about treatment. Although women recognized that community members were taking ART to manage HIV, they expressed differing opinions about whether taking ART was healthy. One woman shared, “There are a number of people in the community who know about these drugs, and they also understand that when one uses these drugs, they become healthier. [However,] some people say that when you use ART, HIV becomes worse” (34 years, ART for 3 months). These conflicting beliefs were echoed by ART-naive women. One woman shared, “I can see [ART] is doing [my sister] good because she is healthy” (29 years, ART-naive). By contrast, another woman said, “I have personally seen someone who is using [ART] and that person is suffering... every time she was given those drugs her [blood] pressure went up” (45 years, ART-naive).

Some women highlighted concerns regarding the safety of long-term ART use and potential adverse effects. Although a number of women expressed concepts such as “ART is for life; when you start there is no stopping,” (46 years, ART for 4 years), many shared a belief that ART was only effective for a limited period and warned against long-term use. “If you use ART longer than 15 years, then you will die… I heard some people in the community say that if you use those drugs for a long time, your liver gets exhausted” (56 years old, ART for 6 years). ART-naive women echoed concerns about potential adverse effects of ART. “There are many side effects [of ART]. You might have itching skin or develop thorn-like things on your body. Others might have burnt skin or become blind” (45 years old, ART-naive).

Despite concerns about the potential adverse effects of ART, many women recognized the importance of ART adherence. One woman noted that missed doses may contribute to virus replication. “It is important to take the drugs... When you start to skip, the virus becomes strong again and starts to multiply” (52 years, ART for 6 years). Although women understood the need to take ART consistently, there was confusion regarding how to handle a missed dose. Some women reported taking a missed dose as soon as they remembered: “[I was] supposed to take my drugs at 7 a.m. or 8 a.m. I remembered at 10 a.m. and took my drugs” (41 years, ART for 6 years). Others believed they were supposed to skip a dose if they forgot to take it on time. “I was told that if you forget the drugs, you leave it like that. You don’t take them. You go on with the next dose” (49 years, ART for 10 years). One ART-naive woman highlighted that “stress builds up” and could contribute to forgetting to take ART: “Sometimes you could be having a problem, your status is not as you want it to be, and sometimes you do not even have money for basic needs, which makes you become stressed until you forget to take medicine” (45 years old, ART-naive).

Several misconceptions were shared about the perceived detrimental effects of combining ART and alcohol. Many women questioned the effectiveness of ART when combined with alcohol, and some women said they were advised to “avoid alcohol” altogether (52 years, ART for 6 years): “I was taught that when one takes alcohol it washes away the drugs from the body because of urinating frequently” (56 years, 10 years on ART). Other women believed that alcohol would not only render ART ineffective but could also cause significant harm:

Taking ART and drinking alcohol concurrently, especially if you took the dose first then drink alcohol, means the drug will not work. When you use drugs and alcohol it spoils your liver and kidneys, because alcohol and drugs are a dangerous combination. (34 years, ART for 3 months)

Another common narrative was that alcohol could contribute to forgetting to take ART: “When you are on medication and take alcohol, you can forget [to take ART]. By the time you remember, the alcohol content is higher than the drug and thus gives the virus an opportunity to multiply” (47 years, ART for 9 years).

Some women turned to traditional medicine and religion as alternatives to ART. One theme that emerged as a reason for choosing traditional medicine over ART was the desire to avoid inadvertent disclosure of HIV status.

Most of the time what makes us not take ART is the use of herbal medicine. “[Instead of taking ART,] we boil the herbal medicine because we are afraid that our family members will find out about our [HIV] status.” (38 years, ART for 9 years)

Although some community members used traditional medicine, one woman added, “[but] then, you will hear they died” (49 years, ART for 10 years). Women shared that, “people who [falsely] say they are doctors” spread skepticism about the effectiveness of drugs, saying, “if you take [ART] your body slowly deteriorates” (56 years, ART for 6 years).

Women shared that some community members’ religious beliefs contributed to their decision to stop taking ART. Although faith provided a source of hope, both ART-experienced and ART-naive women shared stories of friends who died because they felt God cured them of HIV, leading them to discontinue ART:

My friend went to church and they prayed and prayed. She defaulted [on her ART] because she believed that she was healed. We have already buried her. It is true that this disease is real, and God is also real. (38 years, ART for 9 years)

One woman warned against ignoring a health provider’s instructions: “If the doctor has not instructed you to stop your medication and you stop and say that God is with you, you will die” (52 years, ART-naive).

Motivation to Adhere to Antiretroviral Therapy

Women were asked to describe what encouraged them and others to take ART and factors that might affect motivation for adherence. Many women recognized how ART allowed them to engage in everyday activities and feel “like a normal person” again (47 years, 9 years on ART). One woman explained, “If I take these drugs like I am supposed to, I can do any work. I have clearly seen the benefit of these drugs” (56 years old, ART for 6 years). This return to normalcy continued to motivate adherence: “Many times we lose hope when we know that we are positive... but taking these drugs makes you understand that you still have days to live in future so you can live without doubts again like other people” (47 years, 9 years on ART).

Most women felt supported by health care providers, which motivated them to take ART and stay engaged in care. One woman shared how the positive rapport with providers gave her hope. “The encouragement and teaching [from the clinic] is very good. They prevent you from worrying and losing hope. Any provider you talk with encourages you and raises your spirits. It’s a good thing” (47 years, ART for 9 years). Trusting health care provider intentions was helpful for ART-naive women, allowing them to accept their HIV diagnosis and increase their confidence in provider recommendations. “Sometimes we are bothered by our diagnosis and question whether it is true. However, we know the doctor wants to help us” (45 years, ART-naive). The women specifically highlighted the role nurses played in increasing their motivation to start ART: “The nurses are the ones who convinced me to start [ART]. I had completely refused, [but] they gave me facts and completely convinced me [to start ART]” (46 years, ART for 4 years). Many women described how talking with nurses decreased their hopelessness by providing support and education. “[The nurses] give us encouragement and teaching such that we do not worry or lose hope...It’s a good thing” (47 years, ART for 9 years).

Families and loved ones were significant sources of support and motivation for ART adherence. “I feel happy that other people support me. The other day, my sister called me to check on me. I felt cared for” (40 years, ART-naive). For some women, partners provided support for ART adherence. One woman said, “My husband reminds me to take my medication. When I forget, he goes and picks them up for me” (40 years, ART for 1.5 years). Many mothers shared how the desire to stay alive for their children motivated treatment adherence: “I look at my children and think that if I die, I will leave them orphaned. It’s better to take the medication so that I may take care of them” (46 years, ART for 4 years).

Women also expressed faith that God would take care of them but emphasized the continued need to take medication. One woman explained:

We don’t have a choice [about taking ART]... until God comes down and uses his people to manufacture medicine to treat it completely. We take [ART] while praying to God to give us his grace to get a cure, but we cannot stop taking the medicine. (56 years, ART for 10 years)

Behavioral Skills That Affect Adherence

The women shared barriers that could affect ART adherence and strategies to overcome them. Many ART-experienced women reported taking their medications consistently and shared strategies they used to support adherence. One woman stated,

You don’t have to carry a purse to carry your drugs. You are a woman with breasts and wear a bra, place them there. If you are wearing underwear, put them there. When the time comes [to dose], you excuse yourself and take your drugs and the day goes on. (47 years, ART for 9 years)

Changes in routine presented a barrier to ART adherence. Many women on ART shared how they would plan ahead for travel to ensure consistent adherence. “If you know that you are going to travel, take your medicines with you because you don’t know what will happen ahead” (40 years, ART for 1.5 years).

The women described the importance of asking health care providers questions when they had concerns about ART. Several women experienced adverse effects, especially at treatment initiation. One woman explained how her adverse effects were easily resolved when she discussed her concerns with her health care provider. “When I started taking these drugs, I started itching on the second day. When I came back here [I talked with the health care provider] and I had my drugs changed” (52 years, ART for 6 years). Another woman described how visiting the clinic helped her manage her ART adverse effects:

After a month of starting ART, my feet started losing sensation. I visited the nurse and she explained that it would stop. And true to her word, over time, the sensation in my feet returned and I became well. I am doing fine. (34 years, ART for 3 months)

Intervention Feasibility

In addition to ascertaining how information, motivation, and behavioral skills influenced ART adherence, researchers conducting the FGDs solicited suggestions for designing a nurse-delivered mHealth intervention that was feasible. Participants were asked about the availability of cell phones and literacy rates in the community. In addition, women shared preferences regarding text message frequency and concerns about confidentiality. Finally, they provided feedback for the proposed text message response options and message personalization, informed the development of an acceptable, accessible, and appropriate nurse-delivered mHealth intervention to improve ART adherence.

Although the research team was concerned about the ubiquity of phone ownership, we were assured that, “Right now, everyone has a phone… You will find even my grandmother has a phone back at home” (46 years, ART for 4 years). In addition, women felt confident that literacy would not prevent the comprehension of text messages. One woman stated, “Even a nursery school child knows how to read Kiswahili” (40 years, ART-naive). Should any questions arise, women suggested their children may be able to help with reading: “My son would help me if I couldn’t read them” (38 years, ART for 9 years).

Women had differing opinions regarding the desired frequency of text messages. Although some women requested messages several times a day, “It can be easy to forget taking your drugs at the correct time. [Therefore,] we should be reminded two times a day” (45 years, ART-naive), others suggested less frequent messages: “Two times a week is okay, but two times a day!... It will cause problems with your husband” (29 years, ART-naive). Although strong opinions were expressed for a range of frequencies, most women felt that 2–3 messages per week would be reasonable during the first 2 months, reducing the frequency to one message per week in later months. In addition, women requested flexibility for messages to be sent “at the individual’s preferred time” to ensure privacy (47 years, ART for 9 years).

Almost all the women expressed concerns about confidentiality, given the potentially sensitive nature of the content in the messages. The women recommended that messages avoid using words that could inadvertently disclose their HIV status. “Most of us fear that word ART. That word should not be seen [in the text messages]. Use any other word instead so that people who come across her text messages don’t know that she’s HIV-positive” (49 years, ART for 7 years). Women suggested referring to HIV as less stigmatized medical conditions, such as malaria or blood pressure: “The text messages could instruct us to take medication and sleep under a net. Your spouse would think the texts related to malaria prevention and would not know you are on ART” (47 years, ART for 9 years).

In addition to concerns about inadvertent disclosure, some women suggested that a woman, and especially a nurse, sends the text messages to avoid a partner’s suspicion. As one woman stated, “Men are jealous; they may become suspicious” and recommended, “if the message is sent from a female’s number, it will save us a lot of trouble” (41 years, ART for 6 years). Another woman added that, “If it is possible, [the text messages] should be sent by Sister Carol’s number. Even if someone else sees the message, they can call the number...there will be no problems” (29 years, ART-naive). The women suggested that they “[felt] good” about nurses sending the messages as it would “boost morale,” and “improve motivation and increase faith in the clinic staff” (47 years, ART for 9 years).

Intervention Development

Based on qualitative data from the first three FGDs, the research team developed text messages to promote ART adherence. These messages were then shared with women in two additional FGDs to ensure that the study team interpreted their feedback accurately. Example text messages, organized by IMB themes, can be found in Table 1. The complete set of text messages is available in Table 2. Based on the women’s feedback, the study team personalized text messages by name, family status (children or not), language, religion, and the time of day the messages are sent. For example, for Christian women, texts could close with “Be blessed,” while texts for Muslim women could open with traditional Arabic greetings such as “As-salamu alaykum” (peace be upon you). All text messages were signed from Sister Carol, one of the nurses at the clinic; “sister” is a common way to address nurses in Kenya.

Table 1.

Themes Generated From FGDs and Examples of Corresponding Text Messages

Themes Text Message
Information
 Importance of taking ART consistently Hi [name], For blood pressure to be controlled, take all of your medicine at the same time every day. How are you doing? Sister Carol
 Unclear how to respond to a missed dose of ART Hi [name], If you miss your blood pressure medicine, and you remember later, take that dose rather than missing out. Any questions? Sister Carol
 Concern about potential adverse effects of ART Dear [name], Your blood pressure medicines can have side effects, but these get better with time. Do you have any questions? Sister Carol
 Misconceptions about the perceived detrimental effects of combining ART and alcohol Hello [name], It’s OK to take your blood pressure medicine even if you take alcohol. But don’t forget your medicine! Any questions? Sister Carol
 Use of traditional medicine and religion as alternatives to ART Hi [name], Other medicines can affect your blood pressure medicine. Do you have any questions about your medicines? Are you OK? Sister Carol
Motivation
 Support from clinical providers [Hi/As-salamu alaykum] [name], We care for you and welcome you to ask any questions regarding your health. Please SMS. How are you? [Be Blessed,] Sister Carol
 Staying healthy for family and children [Hi/As-salamu alaykum] [name], Your children are precious. Continue taking good care of yourself, so that you can take care of them. Are you well? Sister Carol
 Positive impact of ART on ability to engage in everyday activities Dear [name], Your body shall thank you for living life with purpose. You can do it! Take your blood pressure medicine. Are you well? Sister Carol
 Faith can be a source of support while taking ART “When you go through deep waters, I will be with you” (Isaiah 43:2) You are never alone.
Behavioral Skills
 Behavioral cues can be helpful as reminders to take ART Hi [name], A reminder such as alarms, start of TV shows, or before bed can help you take your blood pressure medicine. Any questions? Sister Carol
 Asking questions of providers is important to address concerns about ART Dear [name], Don’t be shy, no question is too trivial. We are here to help. Please call or come by anytime! Have you been well? Sister Carol
 Need to plan ahead for trips to ensure consistent adherence [Dear/As-salamu alaykum] [name], If you are travelling, make sure you pack your blood pressure medicine! Have you been well? [Be Blessed,] Sister Carol.
 Women sought additional sources of support Dear [name], Our support groups can assist you with meeting others also with blood pressure. You are welcome to join. How are things? Sister Carol
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Note. ART = antiretroviral therapy; FGD = focus group discussion.

Table 2.

Complete List of Text Messages for Motivation Matters! Intervention

Month Information
1 Hi [name], For blood pressure to be controlled, take all of your medicine at the same time every day. How are you doing? Sister Carol
1 Hello [name], Any trouble with your blood pressure medicine schedule, dosing advice, or storage? That’s OK, please let us know! Sister Carol
1 [Dear/As-salamu alaykum] [name], Take all of your blood pressure medicine to keep healthy. Have you been OK with your medicine? [Stay Blessed!] Sister Carol
1 Hi [name], Some other medicines can affect your blood pressure medicine. Do you have any questions about your medicines? Are you OK? Sister Carol
1 Dear [name], Your blood pressure medicines can have side effects, but these get better with time. Do you have any questions? Sister Carol
2 Hi [name], If you miss your blood pressure medicine, and you remember later, take that dose rather than missing out. Any questions? Sister Carol
2 Hello [name], It’s OK to take your blood pressure medicine even if you take alcohol. But don’t forget your medicine! Any questions? Sister Carol
2 Dear [name], Even if you feel well, blood pressure medicine must be continued to preserve your health. Have you been well? Sister Carol
3 Hello [name], Your blood pressure medicine should be stored in a cool dry spot. If you have questions, please SMS. Are you ok? Sister Carol
4 [Dear/As-salamu alaykum] [name], For blood pressure to be controlled, take all of your doses at the same time. How are things going? [Be Blessed], Sister Carol
5 Dear [name], Please let us know if you have blood pressure medicine side effects. [Stay Blessed,] Sister Carol/[As-salamu alaykum] [name], Please let us know if you have blood pressure medicine side effects. Sister Carol
6 [Dear/As-salamu alaykum] [name], The blood pressure medicines are meant only for you and should not be shared. Have you been well? [Blessings,] Sister Carol
Motivation
1 [Hi/As-salamu alaykum] [name], We care for you and welcome you to ask any questions regarding your health. Please SMS. How are you? [Be Blessed,] Sister Carol
1 Hi [name], Trust in your health care team. We want what’s best for you. Any questions? Sister Carol
1 [Dear/As-salamu alaykum] [name], You are stronger than you think you are! Continue to nourish yourself. How have you been? [Stay Blessed,] Sister Carol
1 “I can do all things in Him who strengthens me” (Philippians 4:13). Nothing is impossible! How have you been? Be Blessed, Sister Carol. As-salamu alaykum [name], May the Almighty smile on you and be Gracious to you. How are you? Please SMS, flash or text. Sister Carol
2 Hi [name], You are doing great. Remember to take all your blood pressure medicine every day. Any questions? Please SMS. Sister Carol
2 [Hi/As-salamu alaykum] [name], Your children are precious. Continue taking good care of yourself, so that you can take care of them. Are you well? Sister Carol./Dear [name], Today you will nurture and love the people in your life who are the most important to you. How have you been? Sister Carol
2 Dear [name], Keep your head up and your heart strong. Hang in there and take your blood pressure medicine. Have you been well? Sister Carol
2 Dear [name], Your body shall thank you for living life with purpose. You can do it! Take your blood pressure medicine. Are you well? Sister Carol
2 Dear [name], We are always here for you, care for you, and want you to succeed. Let us know how you are doing. Are you OK? Sister Carol
3 [Hi/As-salamu alaykum] [name], The biggest gift you can give your child is to be happy and healthy. Take your blood pressure medicine. Are you well? Sister Carol./[Dear/As-salamu alaykum] [name], You are lovely and many others care for you. Stay healthy! How is your blood pressure medicine? [Be Blessed], Sister Carol
3 [Dear/As-salamu alaykum] [name], You are beautiful and loved. Take care of yourself! Remember your blood pressure medicine. Are you well? [Be Blessed], Sister Carol
3 Dear [name], we know at times you may feel tired but keep strong; your blood pressure medicine is helping! Are you OK? Sister Carol
3 Hi [name], You are never alone. We are always here to listen. You can do it! Please drop in at any time. How are you? Sister Carol
4 Dear [name], You are beautiful, intelligent, loving, brave and worthy of your own admiration. Be kind to yourself! Are you well? Sister Carol
4 Dear [name], The dream of a mother is to see her children happy. Remember to take your blood pressure medicine. Are you well? Sister Carol./Dear [name], Happiness is not something you find but create. Seize the day and keep yourself healthy! How are you doing? Sister Carol
4 Dear [name], You attract positivity by being positive. You can do this! Your blood pressure medicine is important. How have you been? Sister Carol
4 Hi [name], Mothers are a blessing. Enjoy motherhood and the little angels you have. We would love to hear from you. [Stay Blessed,] Sister Carol./Dear [name], Your past is forever gone, your future is in your hands. Taking care of yourself is in your power. Are you well? Sister Carol
5 Dear/[As-salamu alaykum] [name], Let us make sure we give our children a brighter future. Take care of your blood pressure. Are you well? [Be Blessed,] Sister Carol/Dear [name], We wish for you to be strong. Your blood pressure medicine is important. How have you been doing? [Blessings,] Sister Carol
5 [Shalom [name], May the Lord bless you and protect you. Let us know how you are doing. Please SMS, flash or call. Be Blessed—Sister Carol]/As-salamu alaykum [name]. Trust Allah and pray and He will light the way. Alhamdhulilah. How are you doing? Sister Carol
5 Dear [name], Don’t forget to be your incredible self today! Be someone else’s sunshine and the reason they smile. Are you well? Sister Carol
5 Hi [name], The bright faces of your children always put a smile on your face. Take care of your blood pressure. Have you been well? Sister Carol/Dear [name], Taking care of yourself is the best way to help others including those that mean a lot to you. Have you been well? Sister Carol
6 Dear [name], Taking your blood pressure medicine allows you to live a long and healthy life. Please let us know how you are doing. Sister Carol
6 Hi [name], Your children are precious. Continue taking good care of yourself, so that you can take care of them. Are you well? Sister Carol/Dear [name], Remember not to miss your blood pressure doses so you remain healthy for those who care for you. Are you well? SMS, flash or call. [Blessings,] Sister Carol
6 [Dear/As-salamu alaykum] [name], Think positive and positive things will happen. We are thinking of you. Are you OK? [Stay Blessed,] Sister Carol
6 “When you go through deep waters, I will be with you” (Isaiah 43:2). You are never alone. Keep strong and healthy. How have you been? Sister Carol./Start your day with Bismillah Rahman Rahim and end it with Alhamdhulilah. How are you doing? Sister Carol
Behavior
1 Hi [name], A reminder such as alarms, start of TV shows, or before bed can help you take your blood pressure medicine. Any questions? Sister Carol
1 Dear [name], Don’t be shy, no question is too trivial. We are here to help. Please call or come by anytime! Have you been well? Sister Carol
2 Hi [name], Marking off a calendar daily will help you remember that you took your blood pressure medicine. Are you well? Sister Carol
2 Dear [name], If you feel nauseous/vomiting, eat small amounts often. Taking ginger can help too. It gets better. How do you feel? Sister Carol
2 Dear [name], Our support groups can assist you with meeting others also with blood pressure. You are welcome to join. How are things? Sister Carol
3 Hi [name], You might have strange dreams with your new blood pressure medicine. Don’t worry, it will lessen with time. How do you feel? Sister Carol
3 Hi [name], Count the days since you have last missed a dose of blood pressure medicine. Are you doing well with remembering? Sister Carol
4 [Dear/As-salamu alaykum] [name], If you are travelling, make sure you pack your blood pressure medicine! Have you been well? [Be Blessed,] Sister Carol./As-salamu alaykum] [name], If you are travelling, make sure you pack your blood pressure medicine too! Have you been well? Sister Carol
4 Hi [name], If you have diarrhea cut down on high fat foods, caffeine, and sweet drinks. It will get better with time. How do you feel? Sister Carol
5 Hi [name], If you are feeling stressed, get out of the house and go for a walk. It can clear your head. Are you OK? Sister Carol
6 Hi [name], Set a goal of taking all of your blood pressure medicine this month. You can do it! Any questions? Please SMS, Sister Carol
6 Hi [name], It is important to keep up your energy. Eat fruits, green leafy vegetables, lean meats, and grains. Are you well? Sister Carol
Open in a new tab

Note. SMS = short message service.

For the planned randomized controlled trial (RCT), it was important that women receiving messages confirmed receipt. The study team suggested that women respond with “poa,” meaning well or okay, and “swali,” meaning question, the responses used in previous research (Lester et al., 2010). If a study participant indicated that she had a question or did not respond, she would receive a call from study staff within 24 hours. Text responses and call backs were considered acceptable by the women in the FGDs, but there was some concern about the cost of sending replies. To address this issue, the RCT protocol was designed to provide airtime to cover the cost of sending the replies.

Over the course of the 6-month intervention, a quarter of the messages were designed to provide information; half were related to motivation, and a quarter addressed behavioral skills. Given the many misconceptions about ART that were shared during the FGDs, the study team included a higher proportion of information-oriented text messages during the first 6 weeks of the intervention. In addition, in response to the women’s feedback, messages were sent with a higher frequency during the first 2 months of the intervention period (2–3 text messages per week), with the frequency declining to 1–2 messages per week thereafter. To address concerns about confidentiality, the study team avoided all HIV-related terms in the text messages, referring to ART as blood pressure medication. Finally, text messages were signed from a female nurse, and women receiving the intervention were to be counseled to save the number under a female name to minimize potential tension with partners.

Discussion

We described the use of qualitative FGDs to generate content for an IMB-informed, nurse-delivered mHealth intervention to promote ART adherence among FSW in Mombasa, Kenya. The FGDs revealed the participants’ accurate and inaccurate information about ART. There was a general understanding that ART must be taken consistently, but many members of the community expressed concerns about the safety of treatment. Ambivalence about the risks versus benefits of ART contributed to some community members turning to traditional medicine and faith healing as alternatives to ART. Several factors were strong motivators supporting ART use. Regaining the ability to engage in everyday activities and feeling supported by health providers motivated ART adherence and generated hope for the future. In addition, women reported feeling powerfully motivated to adhere for the sake of surviving to care for their children. Finally, women shared behavioral strategies to support taking medication, including creative reminders for taking ART and asking health providers when they encountered questions. Drawing from the IMB themes in the FGD data, text messages were developed and tailored for the Motivation Matters! intervention.

The structure of the intervention was developed based on WLWH feedback regarding acceptability and informed by best practices from the mHealth intervention literature (Hall et al., 2015). Consistent with global trends identified by the World Bank (Qiang, Yamamichi, Hausman, & Altman, 2011), the women affirmed that cell phone access was virtually universal in the community. Although some women requested more frequent text messages as reminders to take ART, the mHealth literature suggested that daily text messages may be less effective (Hall et al., 2015; Horvath, Azman, Kennedy, & Rutherford, 2012), with burnout increasing over time. Thus, Motivation Matters! was designed with 2–3 messages per week during the first 6 weeks, then 1–2 messages per week for the remainder of the 6-month intervention period. Fear of HIV disclosure was a common concern of women in the FGDs and has been echoed in PLWH in a wide range of settings (Evangeli & Wroe, 2016). Consistent with several HIV-related mHealth interventions (Katz et al., 2013), Motivation Matters! intervention content was designed to avoid any HIV-related verbiage to reduce the potential of inadvertent disclosure. In addition, to minimize suspicion from potentially jealous male partners, the intervention included the recommendation that women save the study messaging number in their phones under a woman’s name.

Several mHealth studies have suggested that personalized messages have a greater impact on ART adherence compared with nonpersonalized messages (Finitsis, Pellowski, & Johnson, 2014; Horvath et al., 2012; Park, Howie-Esquivel, & Dracup, 2014), but few interventions had personalized message content based on multiple factors. Participants in the FGDs who informed the development of the Motivation Matters! intervention favored personalization based on name, family status (children or not), language, religion, and the time of day the messages were sent. Finally, the intervention was designed to be interactive, by incorporating bidirectional text messaging. A recent meta-analysis of mHealth interventions suggested that bidirectional, messaging was more effective at improving ART adherence compared with one-way texts (Finitsis et al., 2014). In addition to promoting increased engagement in the intervention, the bidirectional texting incorporated in the Motivation Matters! intervention was intended to support confirmation of message receipt and allow women who had questions regarding their care to request a call back from a nurse. Increased communication with nurses was intended to improve the patient–provider relationship (supporting motivation) and to provide easy access to correct information about ART, both of which could lead to improved treatment adherence (Brion, 2014).

The intervention development had a number of important strengths. First, Motivation Matters! was developed through an iterative process where the IMB theoretical framework guided the incorporation of FGD participant feedback and findings from extant research, which may have facilitated greater understanding of the mechanisms affecting ART adherence. Moreover, the use of a well-established behavioral theory could support future translation of the intervention to other mHealth platforms as technology evolves (Muessig, LeGrand, Horvath, Bauermeister, & Hightow-Weidman, 2017; Riley et al., 2011; Simoni et al., 2018). Second, the structure of the intervention in terms of timing, frequency, and bidirectionality was informed by a growing body of literature on what worked in mHealth interventions for adherence to health behaviors. Third, the content and structure of the Motivation Matters! intervention were developed by and designed for FSW, a key population disproportionately affected by the HIV epidemic in Kenya. Our research included formative FGDs and follow-up FGDs to validate study team interpretation of the data and allowed participants to directly revise and finetune intervention content and structure. Finally, the intervention used a task-shifting approach using nurses, which may contribute to more sustainable intervention implementation.

Our qualitative research and intervention development were subject to limitations. The relatively small sample size meant that saturation of themes may not have been achieved. However, data from the FGDs seemed to have covered most emerging themes. In addition, although both ART-experienced and ART-naive women were included in the FGDs, all the women were engaged in care. By contrast, some recipients of the Motivation Matters! intervention in the planned trial may be entering care for the first time. Finally, an intervention developed with and for FSW may not be generalizable to other populations. Nonetheless, the intervention may be invaluable because it will target a key population with a high prevalence of HIV (UNAIDS, 2013).

Conclusion

Our formative qualitative analysis, which informed development of the Motivation Matters! intervention, demonstrated that a nurse-delivered mHealth intervention was likely to be acceptable for improving ART adherence in WLWH who engage in sex work. FGDs identified gaps in information, motivational themes, and behavioral skills that could be directly addressed or supported through a nurse-delivered, bidirectional text messaging intervention. The next step will be to evaluate the Motivation Matters! intervention in an RCT to determine its ability to improve ART adherence and viral suppression.

Key Considerations.

  • It is necessary to identify additional strategies to support ART adherence, especially among vulnerable populations such as women who engage in sex work.

  • Given the ubiquity of cell phones, high rates of acceptability, and promising empirical research, mHealth interventions may support ART adherence in PLWH.

  • Theoretical frameworks, such as the Information–Motivation–Behavioral Skills model, and bidirectional and personalized messaging content may improve mHealth intervention efficacy in supporting ART adherence and thus improve clinical treatment.

Acknowledgments

This study was supported by the National Institute of Mental Health (grant R21 MH107217; PI: R.S.M.). FMA was supported by National Institute of Allergy and Infectious Disease (T32 AI007140; PI: Sheila Lukehart). The Mombasa research site has received logistical and infrastructure support from the University of Washington/Fred Hutchinson Cancer Research Center—Center for AIDS Research (P30 AI27757; PI: Jared Baeten). RSM receives funding for mentoring through the National Institute of Child Health and Human Development (K24 HD88229; PI: R.S.M.).

Footnotes

Disclosures

R. S. McClelland receives research funding, paid to the University of Washington, from Hologic Corporation. The remaining authors have no conflicts of interest to disclose.

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

Contributor Information

Frances M. Aunon, Department of Psychology, University of Washington, Seattle, Washington, USA..

Elena Okada, Department of Medicine, University of Washington, Seattle, Washington, USA..

George Wanje, Department of Medical Microbiology, University of Nairobi, Nairobi, Kenya.

Linnet Masese, Department of Medicine, University of Washington, Seattle, Washington, USA..

Thomas A. Odeny, Department of Medicine, University of Missouri-Kansas City, Kansas City, Missouri, USA..

John Kinuthia, Head of Department of Research and Programs, Kenyatta National Hospital, Nairobi, Kenya; Department of Global Health, University of Washington, Seattle, Washington, USA.

Kishorchandra Mandaliya, Department of Global Health, University of Washington, Seattle, Washington, USA..

Walter Jaoko, Department of Medical Microbiology, University of Nairobi, Nairobi, Kenya..

Jane M. Simoni, Department of Psychology, University of Washington, Seattle, Washington, USA.; Departments of Global Health, and Gender, Women, and Sexuality Studies at the University of Washington, Seattle, Washington, USA.

R. Scott McClelland, Departments of Medicine, Epidemiology, and Global Health, University of Washington, Seattle, Washington, USA..

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