Scholarly article on topic 'A Qualitative Study Investigating the Use of a Mobile Phone Short Message Service Designed to Improve HIV Adherence and Retention in Care in Canada (WelTel BC1)'

A Qualitative Study Investigating the Use of a Mobile Phone Short Message Service Designed to Improve HIV Adherence and Retention in Care in Canada (WelTel BC1) Academic research paper on "Psychology"

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{Canada / "continuity of patient care" / HIV / "mobile health" / nursing}

Abstract of research paper on Psychology, author of scientific article — Kirsten Smillie, Natasha Van Borek, Joshua Abaki, Neora Pick, Evelyn J. Maan, et al.

Patient engagement in care and adherence to medication are critical to achieving the full benefits of antiretroviral therapy (ART) among people with HIV infection. A randomized controlled trial in Kenya, WelTelKenya1, showed that an interactive mobile phone text-messaging intervention can improve adherence and viral load suppression. We conducted a pilot study to adapt the WelTel intervention for HIV-infected clients (n = 25) at an HIV clinic in Vancouver, British Columbia. Between April and June 2012, we recruited five participants from five groups: youth (14–24 years), mature (≥50 years), English as a second language, remote (≥3 hours travel time to clinic), and nonsuppressed (CD4+ T cell count <200 cells/mm3 and viral load ≥250 copies/mL on two consecutive occasions). Participants described the intervention as a useful way to communicate with health care providers, thus increasing the ability to access services, report side effects, and attend appointments.

Academic research paper on topic "A Qualitative Study Investigating the Use of a Mobile Phone Short Message Service Designed to Improve HIV Adherence and Retention in Care in Canada (WelTel BC1)"


A Qualitative Study Investigating the Use of a Mobile Phone Short Message Service Designed to Improve HIV Adherence and Retention in Care in Canada (WelTel BC1)

Kirsten Smillie, MA Natasha Van Borek, MScPPH Joshua Abaki, BSc Neora Pick, MD Evelyn J. Maan, RN Karen Friesen, RN(C), BN Rebecca Graham, BSc Sarah Levine, RN, BScN Mia L. van der Kop, MSc Richard T. Lester, MD Melanie Murray, MD, PhD

Patient engagement in care and adherence to medication are critical to achieving the full benefits ofanti-retroviral therapy (ART) among people with HIV infection. A randomized controlled trial in Kenya, Wel-TelKenyal, showed that an interactive mobile phone text-messaging intervention can improve adherence and viral load suppression. We conducted a pilot study to adapt the WelTel intervention for HIV-infected clients (n = 25) at an HIV clinic in Vancouver, British Columbia. Between April and June 2012, we recruited five participants from five groups: youth (14-24 years), mature ($50 years), English as a second language, remote ($3 hours travel time to clinic), and nonsup-pressed (CD4+ Tcell count <200 cells/mm3 and viral load $250 copies/mL on two consecutive occasions). Participants described the intervention as a useful way to communicate with health care providers, thus increasing the ability to access services, report side effects, and attend appointments.

(Journal of the Association of Nurses in AIDS Care, I, 1-12) Copyright © 2014 The Authors. Published by Elsevier Inc.


Copyright © 2014 The Authors. Published by Elsevier Inc.

Kirsten Smillie, MA, is the mHealth Coordinator at the British Columbia Centre for Disease Control, Vancouver, Canada. Natasha Van Borek, MScPPH, is a Research Coordinator at the British Columbia Centre for Disease Control, Vancouver, Canada. Joshua Abaki, BSc, is a Research Assistant at the British Columbia Centre for Disease Control, Vancouver, Canada. Neora Pick, MD, is a Physician at the Oak Tree Clinic, British Columbia Women's Hospital, Vancouver, Canada, an Associate Professor in the Division of Infectious Disease, Department of Medicine, University of British Columbia, Vancouver, Canada, and a Researcher at Women's Health Research Institute, British Columbia Women's Hospital, Vancouver, Canada. Evelyn J. Maan, RN, is a Research Manager, Oak Tree Clinic, British Columbia Women's Hospital, Vancouver, Canada. Karen Friesen, RN(C), BN, is an Outreach Nurse at Oak Tree Clinic, British Columbia Women's Hospital, Vancouver, Canada. Rebecca Graham, BSc, was a Research Coordinator at Oak Tree Clinic, British Columbia Women's Hospital, Vancouver, Canada. Sarah Levine, RN, BScN at Division of STI/HIV Control, British Columbia Centre for Disease Control, Vancouver, Canada. Mia L. van der Kop, MSc, is a PhD Student in the Department of Public Health Sciences, Karolinska Institutet, Stockholm, Sweden, and an Epidemiologist in the Department ofMedicine, University ofBritish Columbia, Vancouver, Canada. Richard T. Lester, MD, is Medical Head at the Division of STI/HIV Control, British Columbia Centre for Disease Control Vancouver, Canada, and Clinical Assistant Professor, Department of Medicine, University of British Columbia, Vancouver, Canada. Melanie Murray, MD, PhD, is a Physician at the Oak Tree Clinic, British Columbia Women's Hospital, Vancouver, Canada, an Associate Professor in the Division of Infectious Disease, Department of Medicine, University of British Columbia, Vancouver, Canada, and a Researcher at Women's Health Research Institute, British Columbia Women's Hospital, Vancouver, Canada.

*This is an open access article under the CC BY-NC-ND license (

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Key words: Canada, continuity of patient care, HIV, mobile health, nursing

For many people living with HIV, the availability of and access to antiretroviral therapy (ART) has transformed HIV from a fatal disease to a chronic one (Fee & Fox, 1992). To maximize the benefits of ART, high levels of engagement in care, the timely initiation of ART, and adherence to medication are required (Bangsberg et al., 2001). Incomplete engagement along the cascade of care is common, and it is estimated that half of known HIV-infected individuals in the United States are not in regular care (Gardner, McLees, Steiner, Del Rio, & Burman, 2011). Furthermore, medication adherence in high-risk populations is low (Tapp et al., 2011), with women being less adherent, partly due to their roles as care providers for children and partners, potential abuse in partner relationships, fear of stigma, homelessness, and concerns regarding side effects (Emery, Pick, Mills, & Cooper, 2010; Sordo del Castillo, Ruiz-Perez, & Olry de Labry Lima, 2010). Active substance use, lack of social support, and depression affect both men and women (Arnsten et al., 2002; Malta, Magnanini, Strathdee, & Bastos, 2010; Palepu, Horton, Tibbetts, Meli, & Samet, 2004). Few interventions specifically designed to promote retention in care among individuals with HIV have been tested, and an effective intervention has yet to be widely implemented (van der Kop et al., 2013). Mobile health (mHealth), the use of mobile phone technology to deliver health care, is an emerging area of disease management that has shown potential in assisting with patient adherence to prolonged chronic treatment regimens and monitoring of care (Lester & Karanja, 2008; Wei, Hollin, & Kachnowski, 2011).

In 2011, worldwide mobile phone ownership reached 85% of the world's population (International Telecommunications Union, 2012). In Canada, mobile phone penetration exceeded 70% in 2010 (Emarketer, 2013) and is expected to reach 100% by 2020 (Miller, 2010); in the United States this figure is even higher at 83% (Rainie, 2010). Short messaging service (SMS) is an accessible method of communication that has shown tremendous potential as a method of health care engagement. HIV-related mHealth interventions have been tested in both resource-limited and resource-rich settings to target multiple aspects

of engagement in HIV care, including providing alerts/reminders to take medications and attend appointments (Crankshaw et al., 2010; Hardy et al., 2011; Pop-Eleches et al., 2011) and for disseminating health-related information (Mitchell, Bull, Kiwanuka, & Ybarra, 2011).

A randomized controlled trial, WelTelKenya1, tested the clinical effectiveness of text message support for HIV treatment adherence in Kenya. This trial, in which 67% of participants were women, showed that patients receiving text message support had significantly improved treatment adherence and viral suppression, meaning they were more likely to achieve viral suppression below the lower limit of detection used (400 copies/mL) 1 year after initiating ART than patients who received standard care alone (Lester et al., 2010). A distinguishing feature of WelTel was the element of patient involvement in communicating with health care providers (HCPs); patients were given the opportunity to self-identify problems or questions related to their care and were connected with an expert from the clinic who responded to their concerns.

WelTel BC1 was a prospective pilot study to adapt the WelTel intervention to the Canadian context and to test the acceptability and feasibility of the intervention in a Canadian HIV clinic setting. The purpose of the results reported here were to understand the attitudes of people living with HIV who faced multiple barriers to engagement in HIV care, and their experiences using the Wel-Tel intervention as a tool to help manage their care.


Study Participants

Between April and June 2012, participants were recruited through purposive sampling from the Oak Tree Clinic, a women- and family-centered HIV clinic in Vancouver, Canada. Inclusion criteria included being at least 14 years of age, HIV diagnosed, currently on or initiating ART, able to communicate in English or have access to an interpreter for the duration of the study, and qualified to be selected for one of the following five groups: youth, mature, English as a second language (ESL), remote, and nonsuppressed (Table 1). Clinic allied health care

Table 1. Five Participant Groups

Youth Mature

English as a second

language (ESL) Remote Nonsuppressed


Ages 14-24 years 501 years

Individuals born outside of Canada, with

English as a second language $3 hours travel to clinic CD41 T cell count <200 cells/mm3 and viral load $250 copies/mL on two consecutive occasions

patients the HCP perceived would most likely benefit due to lack of current phone ownership (and would thus gain provision of a phone through enrollment), and (b) prior demonstration of recurrent nonengagement in care. Eighty percent of participants completed the study (20/25).


staff identified potential participants on the day of their clinic appointments. Individuals who met eligibility criteria were approached by research staff who informed them about the study. Written informed consent was obtained from all participants. The University of British Columbia Clinical Research Ethics Board granted ethical approval.

Twenty-eight HIV-infected individuals were initially recruited; three of these individuals did not start the study; one did not return to the clinic to receive a mobile phone, one did not start ART within 30 days of signing the consent form, and the other was unable to text because of the small size of the phone. Final sample size was 25; see Table 2 for participant demographics. An attempt was made to select broadly representative samples for each of the five groups, but we permitted (a) a bias toward

The WelTel BC1 intervention involved a weekly SMS based on the WelTel Kenyal model using an automated text-messaging platform (WelTel and Vertical Labs). Each week for 6 months during the study period (January to December 2012), enrolled participants were sent a text message asking, "How are you?'' Responses were categorized into those that were reassuring and those that required follow-up by clinic staff. Participants who indicated a problem or question were either texted or called (Figure 1). If participants had not responded within 48 hours of the first text, a second text was sent asking, "Haven't heard from you ... how's it going?'' Mobile phones and phone plan support were provided to participants without a phone: 15 participants owned a mobile phone at baseline and 10 were provided with phones and phone plans. In addition, 4 participants who had their own phones had their plans upgraded for unlimited texting.

Table 2. Participant Demographics (n = 25)


Female 20 (80%)

Male 5 (20%) Age (years)

Median 46

Range 16-60 Country of Origin

Canada 18 (72%)

Africa 5 (20%)

India 2 (8%) Education level

High school 8 (38%)

College or above 7 (33%)

Other/trade 6 (29%)

Cell phone ownership at baseline 15/25 (60%)

Years Since HIV Diagnosis Median Range CD41 T Cell Nadir Median Range

Baseline CD41 T cell count Median Range

Treatment duration <2 years 2-5 years 6-10 years >10 years Treatment start date Median Range

14 years 2.6-20.6 years

130 cells/mm 0-370 cells/mm;

370 cells/mm3 40-850 cells/mm3

5 (21%)

6 (24%)

6 (24%)

7 (28%)

2005 1992-2012

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Figure 1. WelTel intervention. Note: SMS = short messaging service; RN = registered nurse.

Data Collection

Semi-structured interviews were conducted at baseline (n = 25) and at study end (n = 20). Interview topics included acceptability of text messaging to communicate with HCP, optimal strategies for using text messaging to support HIV-infected individuals on ART, barriers to adherence and suggestions for reducing these barriers, and recommendations to improve the intervention. Interviews were conducted in person, if possible; otherwise they were conducted by phone. Interviews lasted approximately 45-60 minutes, were tape recorded and transcribed verbatim. A research staff member who acted as an interpreter conducted one interview in Punjabi; all others were conducted in English. Interviewer-administered questionnaires were also conducted at baseline (n = 25) and study end (n = 20). Questionnaires collected information on demographic characteristics, mobile phone use, and perceptions of the intervention. Participants received $25 Canadian at baseline and study end to reimburse them for their time.

Data Analysis

Interview data were analyzed using inductive thematic analysis. Interview transcripts were read num-

erous times by two researchers who then coded the transcripts for important concepts, events, and experiences. Once a consistent coding framework was established, transcripts were coded using NVivo 9 software (QSR International Pty Ltd, Doncaster, Australia). Approximately 20% of all interviews were double coded to increase reliability. Data related to attitudes toward HIV care were selected and reviewed for important themes, as were data related to opinions regarding the ease-of-use and usefulness of the WelTel intervention in managing care.

Guiding analytic theory. Collection and analysis of data were guided by the Theory of Reasoned Action (TRA) and the Technology Acceptance Model (Davis, Bagozzi, & Warshaw, 1989). The TRA posits that a person's behavior can be determined by considering three factors: (a) the subjective norms associated with the behavior, defined as whether or not people important to the individual believe they should perform the behavior or not; (b) the individual's attitude toward the behavior; and (c) an individual's intention to engage in a behavior. The TRA-guided analysis of results related to participants' discussions of engaging in HIV care (Figure 2). Davis et al. (1989) adapted the TRA for the realm of user acceptance of information systems, resulting in the Technology

Figure 2. Theory of Reasoned Action - engagement in HIV care. Note: HCP = health care provider.

Acceptance Model. Davis et al. (1989) identified two distinct attitudes that could predict adoption of a new information system: perceived ease of use and usefulness. Usefulness was defined as "the degree to which an individual believes that using a particular system would enhance his or her job performance" (Chuttur, 2009, p. 5) and ease of use as "the degree to which an individual believes that using a particular system would be free of physical and mental effort'' (Chuttur, 2009, p. 6). We changed job performance to engagement in care (Figure 3).


Three aspects of participants' experiences with HIV care and the intervention were highlighted. First, as this patient population encountered a number of barriers to care (including distance to the clinic, unstable housing, depression, addiction, etc.), we considered their attitudes toward engaging in HIV care, such as their opinions on the importance of adhering to medication, attending appointments, and the availability of support from those around them. Second, we

Figure 3. Technology Acceptance Model - use of WelTel intervention.

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considered participants' attitudes toward the WelTel intervention in terms of their experiences related to ease of use of the overall WelTel system, and finally, their experiences related to the usefulness of the intervention in managing their health.

Attitudes Toward Engaging in HIV Care

Medication adherence. Many participants experienced periods of interruption over the course of their care due to medication side effects, unstable housing, addiction, and mental health issues. The majority of participants believed taking their medications was important and cited reasons including avoiding resistance, being motivated by a change in their CD41 T cell counts, wanting to be healthy for their children and others around them, and experiencing severe illness when not taking their medications. One participant stated,

It's [taking medication] very important because I do not want this, this disease or illness to progress and I want to stay healthy as long as I can. And I want to be healthy for those people that are around me. And I don't want to put their life in danger either. (Female mature participant)

Factors that contributed to their abilities to take medication regularly included stable housing, proper nutrition, not using drugs, and taking medications at the same time each day in order to establish a habit. Some participants used devices as reminders, including alarm clocks, mobile phone alerts, beepers, and pill boxes set out by day (8/25 participants). Other methods were based on establishing a habit, such as taking the pills right after a specific meal or at the same time every day, putting the bottle beside the coffee pot or cookie jar, taking medications at the same time as their spouse, or participating in a program where they were watched taking their medications (21/25).

A few participants viewed taking medication with less importance, and reported that they "just forget... end up doing other stuff'' (Male youth participant). Others had periods of interruption because it is a constant reminder of their status: "Well, I stopped taking them . Well, 'cause I just hate it. I hate having to take pills and - everyday, all the time ... It's just depressing you know, always being reminded,

everyday'' (Female mature participant). Additional barriers included feeling that the pills were "toxic," being in the midst of addiction, forgetting, unstable housing, or being in a different location than the pills.

Attending appointments. Participants were asked about whether or not they believed attending scheduled appointments was important to their health. The majority stated that attending appointments was a priority. A number of participants described the integral role of case managers in facilitating their attendance by scheduling, reminding them of upcoming appointments, and providing transportation: "They take care of you. They call you; they will pick you up. They, they make sure if you want to help yourself they'll help you. Even . more than that, you know'' (Female nonsuppressed participant). All participants found that the frequency of scheduled appointments was adequate and that appointments were useful (19/19 participants asked). When asked what was useful about coming to the clinic in person, many participants stated that being given the opportunity to talk to a number of people about how they were feeling, both physically and emotionally, was very important. One participant described being exposed to more information by virtue of attending the clinic:

'Cause there's some things I don't think about and um, you know, or don't know about, and the doctor will tell me or, or I'll hear it from somebody sitting in the waiting room, you know, or it's posted on information, the- in-you know, on the bulletins, or you know, in hand-outs. (Female nonsuppressed participant)

Barriers to attending appointments included distance from the clinic, and costs and scheduling challenges associated with travelling to the city every few months. Homelessness or unstable housing made it difficult to attend regular scheduled appointments, and a few participants noted that when things were unstable in their lives they avoided the clinic as they didn't want to be reminded of their problems: "I just got tired ... Maybe was just wrong move I make. I got tired and I didn't want to tell anybody. I just, I didn't want to share to anybody'' (Female ESL participant).

Experiences with care. Participants were asked about their experiences attending clinic and receiving

care. Their responses indicated that being treated with respect and kindness influenced their access to care. Participants described the team of HCPs at the study clinic as "caring," and "they know what they are doing.'' Participants felt that HCPs responded in a timely manner and did not rush people, that there was no judgment, and that the whole team, from the nutritionist to the pharmacist, was helpful and knowledgeable. Also important to some participants was when HCPs inquired about aspects of their lives not related to health:

My doctor - she is just phenomenal. She checks in with me, she makes sure that I'm okay, like it's not just a physical exam, it's much more than that. Like she makes sure that I'm okay mentally and emotionally and stuff like that, she really takes time to talk to me about certain things. (Female youth participant)

Not having a regular doctor and having to go to walk-in clinics or the hospital were listed by many as impeding the likelihood of seeking care. A number of participants described making the extra effort to attend the study clinic to avoid dealing with uncaring staff at other clinics, even if it meant travelling for many hours from out of town: "I purposely didn't go and see the doctor up in [remote area] just so I didn't have to leave out of Oak Tree clinic. I travelled 12 hours, um, every 3 months to just to go to my doctors.'' (Female youth participant)

Support from friends and family. When describing their experiences with HIV care, nearly all participants (17/25) discussed the support they received from family and friends, particularly related to taking medication. Many had family members who reminded them to take medications, while others stated that support was shown when others told them that they cared about them, that they wanted them to be healthy and to live.

My son.. He's on my case every day. He has HIV as well. So, and he takes his [medications] consistently ... And he's had it as long as me ... He never misses a day, no. He's always on my case - "take your pills, take your pills!'' And I love him for that, yes . (Female mature participant)

One participant described the experience of losing his wife and his son, and how going to conferences to share his story had been extremely helpful. Very few people described having no emotional support, and not surprisingly, it was those who had not disclosed their HIV status to their families and friends who felt the least supported: "Even my kids don't know, nobody ... it makes me sad'' (Female ESL participant). Those who did not live in close geographic proximity to their families also reported feeling less supported. Despite facing multiple barriers to engaging in care, most participants viewed taking their medications and attending appointments as important to their health.

Ease of use. The challenge most commonly reported to participating in the study was lost, stolen, or damaged phones. Thirteen participants lost their phones at least once during the 6-month study. This affected their ability to receive and respond to scheduled texts and led to nonresponses. Some participants felt distraught at losing their phones and mentioned feeling "lost'' without it: "I was so depressed. It bummed me right out 'cause I really loved that phone, that was my-to me that was my lifeline, you know? 'Cause I like, I could always talk to anybody, anytime'' (Female mature participant). Loading credit on the mobile phones was another challenge, as was understanding the parameters of the mobile phone plan and dealing with the mobile phone provider. For example, several participants mentioned that they were unable to send or receive texts after using up all their talk time credit, and this affected their ability to participate in the intervention and use their phones for other purposes.

Other challenges that were faced during the study included participants changing phone numbers without advising the research staff, not recognizing the study number and so failing to respond to the scheduled text, and glitches associated with the technological platform. A few ESL participants found communicating in English via messaging challenging: "I found the text messaging to be the most difficult'' (Male ESL participant). This participant did not know how to send or receive text messages, could not read English, and did not have anyone to help. If the messages had been sent in Punjabi,

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however, the patient said it would have been "easy.'' A distance participant found involvement challenging because of the lack of network coverage and mobile phone reception:

It's easier for me to pick up the phone and dial and take up [name]'s time ... than it is for me to ride across the river [chuckle] and try and wrestle with the numbers . to send a message that's like, one sentence long. (Female distance participant)

A few participants also described being frustrated with the process of learning to text, but reported that, over time, it became easier. While these issues may be characterized as being primarily related to mobile phone use rather than use of the WelTel intervention, the two were inextricably linked.

The majority of participants stated that they had no difficulty receiving (15/20) and responding to text messages (13/20 participants), and just over half believed that receiving messages once a week was the right amount (12/20). All participants stated that they received a timely response from HCPs after they sent a text (14/14 participants asked in interview). There were a number of reasons why participants did not respond to texts, including depression, missing the text because they were sleeping, forgetting, turning the phone off, running out of credit, or simply being too busy.

Usefulness of WelTel

Communicating with HCPs. At baseline and study end, participants reported that they were satisfied with their ability to contact HCPs. Many participants already felt quite connected to their health care teams. For these individuals, the text messages were appreciated but they did not strengthen the relationship. Participants enjoyed communicating via text with their HCPs and, for some, it made them feel less socially isolated: "It was very helpful for me . Well sometimes I feel really alone, so it made me not feel so alone'' (Female nonsuppressed participant). Participants appreciated that they often received a faster response through text messaging than when calling and did not have to travel to the

clinic to receive information. A number of participants stated that while they liked the intervention, it did not replace seeing someone in person: "It's way more warmth and it's just better. Everything's better in person. I don't have any use for text messaging. I really don't. Like, other than to communicate with you guys, I don't ..." (Female youth participant). A few clarified that texting and in-person visits were not comparable, and that they liked having the opportunity to communicate both ways. Some participants preferred texting over calling or talking in person; "I think the cell phone is easier and much more reliable, except for if the network goes down [laugh] ... I'm more comfortable with sending text messages instead of seeing people face to face . Especially new people'' (Female distance participant) and that communicating through text made it "easier to say things'' (Female ESL participant).

Engaging in care. The majority (13/20) of participants stated that the intervention had no effect on the importance they placed on taking their medication, while a few (3/20) reported that it positively influenced their "laxi-daisy attitude'' (Female nonsuppressed participant). Similarly, the majority of participants said the intervention had no effect on their attendance at appointments (13/20), while a few participants said that it assisted them (5/20). When asked about the most helpful aspect of the text message intervention, participants noted the consistency of the messages and the impact this had on their psychosocial health. Many described how they appreciated receiving the message and that it reminded them that "somebody cares!'' (Female nonsuppressed participant). Participants described feeling comforted knowing that the HCPs were there for them when they were in crisis, and that they were referred to support services when needed. One participant described the profound effect that participating had:

The greatest, um, thing I got out of that was really learning how to love myself and take care of myself, and value and appreciate myself and my life. Interviewer: Okay. And that was through the text messaging? Participant: Yes, it was. It was a very valuable experience for me. (Female nonsuppressed participant)

In contrast, another participant described the experience as not having much of an impact:

It didn't really change much, to be honest. It's just the same. You get, you get a text, you tell them what's going on, and then that's pretty much it. I've never really called in to say, like, anything else. (Female nonsuppressed participant)

A few participants noted that personalizing the messages, varying the content, and making the messages more "heartfelt'' could improve the intervention.

All participants who completed the questionnaire at study end said they would recommend this program to a friend (20/20). Participants described how the intervention was beneficial to managing their care, including appointment scheduling (16/20), appointment reminders (15/20), nutrition-related issues (14/20), requesting blood test results (14/20), and conversation (12/20).

Well ... I knew I was getting sick when I couldn't even drink water ... and that day I was just like wondering, "What am I gonna do, what am I gonna do?'' and then my phone beeped . and low and behold, it was the hospital (laugh), "Hey, how are you?'' Like, uuh, "not great ..." So when, when I said, "not good,'' they immediately contacted [hospital] right away and, and conversed with her and then they got back to me and then . everything was all set up by the, well by the time I got over there, it was all set up for me. (Male distance participant)

One distance participant described that while receiving the text messages did not affect her attendance at appointments, it provided a connection for the time in between: "They don't at, at all ... What they do is they give me that outlet in between those 4 and 6 months to make contact'' (Female distance participant). Texting to arrange for transportation was also identified by some as a major benefit to managing care (5 participants).

Three participants reported never receiving or sending a message that was particularly helpful/useful, and one participant reported experiencing no benefit from the intervention. Participants had mixed responses regarding the intervention's overall impact on their health; a few stated it did not impact their

health at all (5 participants), while others stated that they believed they were doing better now than 6 months ago and that the intervention likely had something to do with that (7 participants).


Importance of Support, Not Reminders

Understanding patients' perceptions about engagement in care (linkage, retention, and adherence) is central to developing an effective intervention that will support their ability to seek and return to care. Guided by the Theory of Reasoned Action, analysis of responses to questions related to engagement in care indicated that most participants had the support of friends, family, and HCPs to engage in HIV care (subjective norms associated with the behavior), believed that taking medication and attending appointments was important to their health (attitudes toward behavior), and intended to engage in care by scheduling appointments and picking up medications (intention to engage in behavior). At baseline, participants described actively using a variety of methods to manage their care, such as setting alarms or beepers at medication times, stationing their pills beside the coffee pot, or enrolling in surveillance programs where they were watched when taking their medications. Despite this, maintaining engagement was a challenge due to a number of barriers, including drug use, depression, unstable housing, feeling judged by HCPs outside of the study clinic, and feeling alone.

While the effectiveness of SMS reminders in improving ART adherence has shown promise (Andrade et al., 2005; Mannheimer et al., 2006; Pop-Eleches, et al., 2011; Wise & Operario, 2008), this group of participants required more than a reminder to overcome the multitude of barriers they faced. The WelTel intervention provided a conduit for many to deal with challenges in a timely manner, thus facilitating the ability to attend appointments, communicate with their HCPs, and take medications.

The WelTel intervention was not valued as much for its function to remind or send information, but as a consistent and easy-to-use method of accessing

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psychosocial support and HCPs. Many of our participants had support from family and friends, and had already established relationships with their HCPs prior to the intervention, a factor shown to promote long-term engagement in care (Mallinson, Rajabiun, & Coleman, 2007). What participants required was a method to help them facilitate and maintain this relationship to care. When asked what they liked about the WelTel intervention, most described appreciating the feeling that someone cared, that someone was looking out for them, and that they were not alone. A few participants suggested personalizing messages as a way to improve the intervention, an approach that has been used in other SMS studies (Bigelow, Carta, & Lefever, 2008; Rodgers et al., 2005). Personal attention and care were key factors for motivating these participants to remain engaged in care.

Case management models have been shown to increase linkage to HIV care within the first 6 months of diagnosis (Gardner et al., 2005) and are associated with fewer unmet needs and higher use of HIV medication for groups that experience multiple barriers to care (Bradford, 2007; Katz et al., 2001). Compared to a passive referral system, outreach programs are better equipped to help individuals address the multiple barriers they may experience when accessing care. While effective, these services can be labor intensive and expensive, and can be disconnected from the plethora of other health services. Participants said the WelTel intervention was effective in increasing access to outreach workers and outreach nurses, which in turn increased ability to engage in care by arranging transport to appointments, scheduling appointments outside of those already booked, re-ordering medications, and obtaining test results. Just as importantly, HCPs noted they were able to communicate and locate clients much more effectively than prior to the study (results not reported here). The intervention was useful both to participants who required assistance with various components of care and to HCPs providing this care. The WelTel intervention has the potential to act as an affordable conduit linking outreach services to a structured system of health care delivery, particularly as it is embedded in the clinic setting.

The WelTel intervention offers a relatively simple method for participants to engage with their HCPs. A

smart phone is not required, as an app is not used, and the patient needs only basic text messaging knowledge to participate. Very few participants reported difficulty in receiving and responding to texts; exceptions included two ESL participants, one distance participant who lived outside of network range, and one participant who found the physical act of texting difficult. Participants also identified a number of barriers to using the WelTel intervention, with lost/ damaged/stolen phones topping the list, and the associated logistical issue of changing phone numbers and dealing with mobile phone plan providers. Aside from these issues, most participants indicated that the intervention was easy to use.


This small-scale pilot study must be considered in the context of its limitations. Selection bias was reported by the HCPs who enrolled patients who they felt were most challenging to engage in care and were most likely to benefit from the intervention. While the effectiveness of WelTel to improve health outcomes associated with engagement in care has been shown in Kenya (Lester et al., 2010), the gener-alizability and sustainability of the WelTel intervention in a resource-rich setting has not yet been determined in a clinical trial.


Our research supports the use of the WelTel SMS support intervention as a simple and useful approach to facilitating patient-HCP communication and engagement. While a service to increase communication will not eliminate many of the barriers associated with engaging in care, such as medication side effects, distance from the clinic, or unstable housing, increasing access to support may increase the likelihood of following through with recommendations, appointments, and other support services. Using low-cost interactive text messaging has the potential to serve as an affordable and easy-to-use conduit to link individuals to HCPs (outreach workers, nurses, case managers) who are equipped to assist with health promotion and navigating the health care system.

Key Considerations

• The WelTel short messaging system (SMS) intervention is an easy-to-use and useful approach to facilitating patient/health care provider communication and engagement, particularly for those individuals who experience barriers to care, such as unstable housing, addiction, and geographic distance from a health care clinic.

• While a service to increase communication will not eliminate many of the barriers associated with engaging in care, increasing access to support may boost the likelihood of following through with health care provider recommendations, appointments, and other support services.

• Low-cost interactive text messaging has the potential to serve as an easy-to-use conduit to link individuals to health care providers (outreach workers, nurses, case managers) equipped to help them navigate the health care system.


Richard T. Lester is the founder of WelTel, a nonprofit nongovernmental mHealth organization with the goal of scaling up evidence-based mHealth solutions; he has no financial stake in or salary from the organization. The remaining authors report no real or perceived vested interests that relate to this article that could be construed as a conflict of interest.


This study was conducted with funding from the British Columbia Centre for Disease Control Foundation and Bristol-Myers-Squibb. The study team would like to thank all study participants for their valuable input into the study.


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