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Cell phone disconnection disrupts access to healthcare and health resources: A technology maintenance perspective

Amy L Gonzales and Lindsay EmsIndiana University, USA

Venkata Ratnadeep SuriNanyang Technological University, Singapore

AbstractOver 50% of people in poverty in the United States no longer have a landline telephone, and this same population is more likely to have a no-contract cell phone plan requiring the continuous purchase of minutes. As a result, the poor may increasingly experience short-term phonelessness, which may disrupt access to healthcare and other services. To explore this we conducted 37 client interviews and 7 staff interviews at two free health clinics. Cell phone disconnection was a regular occurrence that delayed access to care and threatened client privacy. Temporary disconnection also contributed to lost employment, lost welfare benefits, and strains on social support networks—all of which are critical for optimizing health. Results are interpreted through a lens of technology maintenance, which argues that the poor will struggle to maintain digital access after ownership and public availability are realized. The potential worsening of health inequalities and related policy implications are discussed.

KeywordsCell phone access, dependable instability, digital divide, health inequalities, mobile disconnection, technology maintenance

Corresponding author:Amy L Gonzales, Indiana University, 1229 E. 7th Ave, Bloomington, IN 47405, USA. Email: [email protected]

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Primary care is about contact, and when the contact information doesn’t work, it can feel like something is broken. I depend on the certainty of those return visits, a chance to take

another look, and the idea that patients are findable

Dr Perry Klass (pediatrician)

This excerpt is from a 2010 editorial in The New England Journal of Medicine entitled “Disconnected” (Klass, 2010). Dr Klass describes reviewing a patient’s record and encountering a 3-month-old at risk for neurological abnormalities. The doctor is unable to contact the family because the primary phone number and the emergency contact number are both out of service. Through investigation of extended family records the doctor eventually succeeds, but uses this incident to describe her concern that growing reliance on mobile communication in the United States may impede health-care delivery and put patients’ lives at risk.

Serving low-income families often means working with a hard-to-reach population, but plummeting landline rates may worsen this problem. More than 50% of low-income households in the United States no longer have a landline telephone (Blumberg and Luke, 2013). In addition, US surveys of phonelessness, or being without any household telephone service, employ simplified measures of cell phone disconnection (e.g. During the most recent time you or your family were without telephone service, did you have a working cell phone? Yes/No, Centers for Disease Control [CDC], 2013). This means that intermittent cell phone disconnection is rarely measured, and its effects on health are largely unknown. Likewise, little is known about how frequently changing cell phone numbers may disrupt important communication networks, such as contact with doctors, schools, and social services. Given the growing number of people that rely solely on cell phone communication in the United States, even short-term disconnection may have an impact on patients’ health and well-being. To address these issues, we explore the effect of cell phone disconnection on the lives of low-income clients from two free health clin-ics using in-depth semi-structured interviews. Many of our participants were chronically ill clients, primarily with HIV, as a chronically ill population is likely to have persistent health-care needs and must frequently rely on telephones for information and support (Ling, 2004). These data provide an important step toward understanding frequent short-term cell phone disconnection and its consequences for health.

We explore these phenomena through the lens of technology maintenance. Technology maintenance proposes that as the poor increasingly achieve in-home and public access to digital technology they will struggle to maintain that access (Gonzales, in press). In some cases this will lead to repeated, temporary disconnection, or dependable instability. Complications with technology maintenance for low-income populations may exacer-bate existing health inequalities in the United States (e.g. Viswanath and Kreuter, 2007), and is consistent with the stratification model of diffusion, which argues that marginal-ized groups will fail to achieve the same level of access as privileged groups (Norris, 2001). Indeed, our data suggest that many low-income US users face ongoing struggles



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to maintain connection. When these techniques fail, frequent temporary cell phone dis-ruptions slow the delivery of healthcare and interrupt additional critical support systems, including employment, public assistance, and interpersonal support.

The digital divide and technology maintenance

Research on the digital divide, or the discrepancy in access to digital technologies (Norris, 2001; Van Dijk, 2005), has evolved dramatically over the past decade. At the most basic level, stakeholders (i.e. policy makers, researchers, and community members) have been concerned with ensuring initial access to the Internet and cell phones in the home and in public spaces. Internet use is positively associated with higher earnings (DiMaggio and Bonikowski, 2008) and enhanced psychosocial well-being (Rains and Young, 2009; Valkenburg and Peter, 2007). Cell phones have increased telephone connectivity for bil-lions of people worldwide (Ling and Donner, 2009), and are associated with improved economic conditions (Beuermann et al., 2012), innovative business practices (e.g. Donner, 2006; Donner and Tellez, 2008), and health outreach (Donner and Mechael, 2013).

It has become apparent, however, that initial physical access to digital technology is not enough to ensure its benefit. Multiple researchers have pointed to the need for understand-ing the digital divide as more than a binary (e.g. Castells, 2001; Wessels, 2010). Van Dijk (2005), for example, has identified different types of access: motivational, material, skills, and usage access (i.e. breadth and depth of use). People must have “control and choice over technology and content” (Selwyn, 2004: 352), content should be relevant to user identity (Brock, 2005), and users must have the experience and skills to navigate content (DiMaggio et al., 2004; Hargittai and Hinnant, 2008), or they may be susceptible to a “second-level digital divide” (Hargittai, 2002). In sum, research on differences in digital access must appreciate broader issues of social inequality to truly understand how digital technologies can be used to benefit the socio-economically disadvantaged (Castells, 2010; Helsper, 2012; Wessels, 2013). Doing so appropriately conceptualizes the digital divide as a com-plex long-term problem that cannot be resolved simply by providing initial access.

In this vein, we continue to pursue nuances in the digital divide. In contrast to valuable investigations of the “second-level” digital divide, which emphasizes skill, in this article we return to issues of material access, or a “first-level” divide (Van Dijk, 2005). Previous researchers have pointed out that initial access is not enough to ensure material access. Van Dijk (2005), for example, has noted that material access is a multi-dimensional construct that does not simply require a hard drive or handset, but also “peripheral access” (e.g. print-ers, Bluetooth headsets) and “conditional access” (e.g. pay-as-you go web sites) to fully engage digital offerings (Van Dijk, 2005). Zillien and Hargittai (2009) note that quality of access in computer age is also a factor in shaping the breadth of Internet use, and the type of access (dial-up vs high-speed) matters as well (Zickuhr and Smith, 2012). Given the complexity of material access that often goes unappreciated, Van Dijk (2005) proposes that “statistics on computer and Internet access are often exaggerated, and real access problems are obscured” (p. 47).

Recent research suggests that ongoing struggles to ensure material access may be bet-ter understood through a lens of technology maintenance (Gonzales, in press). Borrowing




from critical-cultural work by Heidegger on system breakdown and repair (Graham and Thrift, 2007), technology maintenance refers to the constant time, energy, and money required to maintain digital access after hardware ownership or public availability is realized. Graham and Thrift (2007) primarily describe large-scale systems; we apply these concepts to individual level technology use. This approach complicates expecta-tions that everyone will have a mobile phone and that they will be readily available—a “taken for grantedness” with respect to mobile phone access (Ling, 2012). Instead, com-mon cell phone maintenance practices that limit functionality include: counting cell phone minutes to avoid “going over”; switching between cell phones depending on min-utes; or “beeping” (calling and hanging-up) to communicate without minutes (Donner, 2007; Horst and Miller, 2006; Ureta, 2008). It is also common for users in developing countries to share cell phones with family members, which requires maintenance of per-sonal relationships. For example, women in some developing countries depend on male family members to maintain access (Chib and Chen, 2011; Chib et al., 2008). These indicators of technology maintenance have primarily been observed outside of the United States to-date. Scholars have paid very little attention to these same practices by margin-alized citizens in a wealthy and wired nation, such as the United States.

According to a technology maintenance framework, the poor are more likely than wealthier users to spend resources staying connected, yet may be more likely to experi-ence frequent, temporary disconnection. In the case of cell phones, the poor often use second-hand, low-quality cell phones that are susceptible to malfunction (Gonzales, in press; Host and Miller, 2006); no-contract plans, which ease entry-level access (Gideon, 2012; Kalba, 2008), often require users to change numbers. As a result of these persistent technology maintenance issues, low-income cell phone users may become accustomed to a phenomenon of dependable instability in cell phone communication—normalized cycles of connection and disconnection (Gonzales, in press). Using this conceptual frame-work, we explore how complications of mobile technology maintenance and dependable instability disrupt key health communication networks for low-income populations.

m-Health: a blessing or a curse for poor citizens?

Having access to social support is a key factor in preserving physical well-being (Cohen, 1988; Uchino et al., 1996), and cell phones are a critical resource for chronically ill patients who need to be in regular contact with medical providers and loved ones (Ling, 2004; Gonzales, in press). e-Health research has demonstrated that online support groups can improve mental health and patient self-efficacy (Rains and Young, 2009), and mobile health interventions are now a popular way to expand health-care delivery (e.g. Donner and Mechael, 2013; Evans et al., 2012; Head et al., 2013; Miron-Shatz and Ratzan, 2011). Recent m-Health interventions that have received attention include text messaging and/or personal digital assistants (PDAs) to support management of health concerns such as dia-betes, asthma, eating disorders and HIV treatment, smoking cessation and weight loss, among others (Cole-Lewis and Kershaw, 2010; Krishna et al., 2009; Lester et al., 2010).

The majority of these m-Health studies, however, come from high-income countries (Free et al., 2013). Scholars focusing specifically on improving health among low- and middle-income nations are often more cautious in their optimism for the success of m-Health initiatives (Mechael, 2009; Mechael et al., 2010; Tomlinson et al., 2013).



Gonzales et al. 5

Tomlinson et al. (2013) note that very fewer m-Health studies have been done in low- and middle-income countries. From their perspective, more evidence is needed to substantiate a “scaling up” of m-Health initiatives in these countries. Certainly, researchers have pointed to innovative uses of mobile phones in the developing world (e.g. Chib et al., 2014). But according to Mechael (2009), in order to formally exploit cell phone technology, it is criti-cal for researchers and practitioners to understand the “natural role” of mobile phones within a given community. Populations that are most likely to be sick are also the most likely to struggle with access to digital technologies (e.g. the poor, the elderly) (Eng et al., 1998; Zickuhr and Smith, 2012). As health-care systems increasingly rely on digital infra-structure to store documents, communicate with patients, and collect data on existing health needs, those without stable access to cell phones and the Internet will have a more difficult time receiving healthcare (Humphry, 2014; Viswanath and Kreuter, 2007). From this perspective, a growing dependency on digital technology for health could potentially intensify health disparities despite well-meaning efforts to do the opposite.

The idea that technology diffusion might exacerbate social disparities was articulated in early projections of digital adoption (Norris, 2001; Van Dijk, 2005). On one hand, the nor-malization model proposes that early digital disparities in access between rich and poor will eventually disappear as costs fall and diffusion of a technology spreads (Norris, 2001). To some degree this has been true: as cell phones have become less expensive, adoption has flourished (International Telecommunications Union [ITU], 2013; Ling and Donner, 2009). On the other hand, the stratification model proposes that as wealthier users benefit from new technologies, poorer users will lag behind and some will be unable to afford adoption altogether, resulting in a “usage-gap” or a “rich-get-richer” effect (Van Dijk, 2005; Viswanath and Kreuter, 2007). Although most people in the United States have access to cell phones (Duggan, 2013), evidence that low-income users are commonly experiencing dependable instability would support the stratification model of the digital divide.

Study research question

Many studies report the advantages of m-Health initiatives among more consistently connected patients. Here we turn in a different direction to investigate the particular chal-lenges that everyday phonelessness presents for accessing healthcare for the poor. Given the simultaneous decrease in landline telephone use and increase in prepaid cell phone use for low-income populations (Blumberg and Luke, 2013; Chetan, 2012; Kalba, 2008), along with the established importance of landline and mobile telephones for access to healthcare (Gonzales, in press; Ling, 2004; Ling and Donner, 2009), we explore the fol-lowing research question using a lens of technology maintenance: is frequent short-term cell phone disconnection disrupting access to healthcare and other support systems for low-income populations and, if so, how?

Methods

Study context

This study was conducted in a mid-sized Mid-Western town in the United States. A pur-posive sampling method was used to recruit adults from low-income groups who received




healthcare from two community organizations. The first organization (Organization A) provides healthcare and other services to clients who are HIV+. Over 70% of their clients make US$20,000 a year or less. The second organization (Organization B) provides free medical services to those without medical insurance who make less than 200% of the federal poverty level. Recruitment letters were mailed out to all clients of Organization A, and flyers were posted at the front desk of Organization B. Some service providers from the two organizations were also interviewed to investigate their experiences of cli-ent cell phone disconnection.

Demographics

In all, 39 clients (n = 29 served by Organization A, and n = 10 served by Organization B) took part in the study. Client household income ranged from less than US$5000–US$35,000 a year, with the median income range being US$0–US$5000 a year. Two cli-ents did not report household income. Participant age ranged from 30 to 78 years (M = 39 years). Four participants chose not to report age. Of the participants, n = 17 (46%) were female; the sample was primarily White, n = 23 (62.5%), with some African Americans, n = 8 (22%), Mixed Race participants, n = 5 (13.5%), and Others, n = 1 (2.7%). Data from two interviews were dropped because they were not clients at either clinic and had household incomes >US$50,000 a year. Client-participants were paid US$30.

One-on-one interviews were conducted with six caseworkers and prevention educa-tors from Organization A, and a group staff interview was conducted with Organization B. Organization A’s caseworkers were responsible for managing the ongoing care (i.e. ensuring access to insurance, medicine adherence, etc.) for approximately 50 clients each. Prevention educators provided HIV testing and educational programming to resi-dents in a geographic territory of 22 counties. Staff at Organization B consisted primarily of nurses, as well as administrators. Demographic information from the service providers was not collected.

Data collection and analysis

Data were collected through 1- to 2-hour in-depth semi-structured interviews by all three authors (two White females, one East-Indian male). All interviews were conducted in English and were audiotaped. Interviews were conducted in libraries, coffee shops, and in private rooms at the clinics. Clients were asked about their experiences using cell phones (e.g. How long have you used a cell phone? Did someone give it to you?), chal-lenges affording phone services (e.g. How much do you pay for it? Do you have to cut back on something to afford the plan?), and experience with disconnection (e.g. Has your cell phone ever disconnected? Does it complicate your life when it happens? If so, how?). Questions also focused on problems accessing healthcare and other social ser-vices (e.g. Have you ever had problems contacting your doctor or service provider due to cell phone disconnection?). Participants were also asked how disruption affected their employment, finances, and personal and professional relationships. Social service pro-viders were asked about their experiences with client disconnection (e.g. Do you often lose contact with your patients? What are some of the reasons why you cannot get a hold



Gonzales et al. 7

of them?), and their workaround responses (e.g. What do you do to get a hold of them, can you give me specific examples?).

The audiotaped interviews were transcribed for analysis. Transcripts were critically read and analyzed to observe latent themes in participants’ responses to interview ques-tions. Emerging themes were identified through a thematic coding of the interviews, which was aimed at organizing similar ideas into conceptual categories to eliminate redundancy and identify disconfirming evidence (Miles and Huberman, 1994; Strauss and Corbin, 1988; Yin, 1994). In the sections below, specific quotes have been chosen to exemplify the core themes. As a result of these analyses, the findings have been organized in the following manner: we first describe techniques used by participants to maintain cell phone access, sometimes at great cost, followed by a discussion of the implications of disconnection when it occurred. We focus on implications of disruptions for access to healthcare, and then explore disruptions in access to additional resources related to health.

Results

Nearly all participants enacted maintenance techniques to avoid disconnection (e.g. managing minutes, cutting back on other expenses), but despite these techniques, many experienced disconnection on a regular or semi-regular basis. The vast majority of cli-ents in this sample did not have landline phone service; thus cell phone disconnection typically resulted in temporary phonelessness. The consequences of phonelessness not only included disruptions in access to healthcare, according to both clients and staff, but also caused disruptions in employment, social services, and interpersonal support.

The cost of maintaining access

Consistent with recent findings on the growing number of prepaid cell phone plans (Chetan, 2012), most of the clients in the sample relied on no-contract phones. Some purchased phones privately; others relied on free government phones, sometimes referred to as “Obama phones.” These phones are available to people receiving government sub-sidies and include 250 voice minutes and 250 texts each month. Of those that purchased monthly plans, some used unlimited-minute phone cards but many used limited-minute cards to save money. As Nancy, an unemployed 60-year-old with HIV, said, “[My son and his girlfriend] were like, ‘for $50 instead of the $25 you’re spending on 750 minutes you can get unlimited text and talk.’ And I was like, ‘yes, but I don’t have $50.’”

Participants employed a variety of technology maintenance techniques to manage limited-minute plans. When necessary, clients would turn off the phone, ignore calls, or ask callers to call back later. Some clients used alternative digital communication to save voice minutes, such as texting and Facebook, though few had Internet access at home. More commonly, clients borrowed landline telephones to save minutes, especially for calls that “burn through minutes.” Harold, a 57-year-old HIV patient, was one of many to express frustrations with these calls:

It’s a lot of trouble, and I mean, especially when you outside and you on a pay-by-the-minute cell phone and they put you on hold. I mean, that’s not cool … I wish they had a cell phone that




wouldn’t even accept “on hold” … if [the nurse] tells me it’s going to take a minute I explain that I’m on a pay-by-the-minute phone and she says thirty minutes, you know, and then I call her back when I get home. …

In sum, maintaining access was often possible, but came at a cost. Many clients reported cutting back on other expenses (e.g. clothes, haircuts, coffee) to ensure cell minutes. Laney, a 30-year-old single mother with HIV stated, “… different needs like the kids shoes, or birthdays or holidays, sometimes we have to excuse those in order to pay the phone bills.” Multiple clients reported choosing between putting minutes on the phone or gas in the car. That is, nearly all clients viewed the cell phone as a primary necessity, comparable to other utilities. Staying connected was a priority, but it involved costs to other social and material resources, reflecting the interdependency of digital scarcity with other aspects of poverty (Helsper, 2012; Wessels, 2013).

Coping with dependable instability

In cases when clients were unable to maintain minutes, the result was short-term discon-nection. This finding lends evidence to the concept of dependable instability.1 We start by exploring the implications of dependable instability from clients’ perspectives and then from staff’s perspective. Next we explore the effects of disconnection on access to employment, social services (e.g. food stamps), and interpersonal support networks, as all of these are important for physical and emotional health (Humphry, 2014).

Disruptions in healthcare: client perspectives. Cell phones were the primary means of contact-ing doctors, caseworkers, and pharmacies. Some clients called doctors in advance when they knew they would be out of minutes or changing phone numbers, though numbers were often stored in nonfunctioning phones, making this difficult. Once disconnected, clients had two primary ways of maintaining contact: seeking face-to-face interactions and bor-rowing a phone.

Many clients did not own a car, and often reported spending hours walking or taking the bus to enable face-to-face communication at clinic offices and pharmacies. It was not unusual for clients to walk 2–5 miles to access a telephone or meet a provider. As Laney described,

I don’t have a car, too. So, like, I could be sitting at home and if I have my cell phone then I can call the pharmacy and say, “is my medicine in?” and they will be like, “yes, your medicine is ready to pick-up.” Whereas, if I don’t have a phone, then I have to walk there or go on a bus. And when I get they tell me that it’s not there and then I have to go back home.

Equally burdensome, borrowing a phone when disconnected typically involved a pro-cess of message triangulation: disconnected clients would leave a back-up phone num-ber with providers (often a family member’s number) and then collect messages via face-to-face contact or by calling the family member from a community center or neigh-bor’s phone. Clients would then return calls to providers once they had access to a phone.

These responses to disconnection were not without consequence. Seeking face-to-face contact was time consuming. Borrowing phones was also inconvenient, and it



Gonzales et al. 9

threatened privacy when providers returned calls to borrowed phones or calls were made in the vicinity of the phone’s owner. To maximize privacy, some HIV clients blocked calls so that providers could not return calls to a borrowed phone. Failing to delete or obscure numbers from borrowed phones forced some clients to lie to friends and family about their HIV status and, in the case of one client, unintentionally exposed her HIV status to a family member. These incidents demonstrate that temporary disconnection is not only an inconvenience but it also threatens the privacy of traditional provider–patient interactions. Because of this, many clients said they did not like relying on others to maintain communication networks, though often felt that they had no choice.

Disruptions in healthcare: staff perspectives. According to most staff, frequent disconnec-tion commonly slowed health-care delivery. One staff member estimated that phones were out-of-service about 25% of the time; another said that it was a weekly problem. From their perspective, the primary consequence of disconnection was that clients were likely to miss appointments or paperwork deadlines.2 Because routine contact was required by funders to maintain insurance and services, temporary cell phone dis-connection threatened these resources and wasted time. At least one client in this sam-ple lost her insurance in part because she missed a call from her caseworker when her phone was disconnected. As Casey, a caseworker for HIV clients at Organization A, described,

[…] you know, something that could take potentially a couple weeks to a month to get all the documentation. … if there’s phone issues, or communication issues, that stretches it out longer because they don’t get in to the doctor, because they don’t have insurance so they’re not going to see [doctor’s name] or get into [Organization B], and that takes 6 weeks to get in there anyway …

Staff had a variety of imperfect mechanisms to cope with disconnection. Some used text, email, or Facebook to contact clients, but these alternatives were constrained by a lack of client Internet access and institutional policies limiting social media. Another response was to rely on inter-organizational communication networks, because clients with HIV saw the same doctor, pharmacy, and caseworkers. It was not uncommon for staff from these offices to call one another to track down current phone numbers, which was time consuming but often effective because pharmacies necessarily had working phone numbers. Ultimately when clients were unreachable, staff members were forced to drop all services and close a client’s case file. It was not uncommon for files to be repeat-edly closed and reopened due to frequent disruption in communication. In all, dependable instability placed a burden on the effective and timely delivery of healthcare.

Disruptions in access to additional resources. In order to maximize health, clients needed to have steady access to additional support systems, including employment, subsidized food and housing, and contact with friends and family. Although clients were concerned about the effect of disconnection on healthcare, they were very concerned about the effects of cell phone disconnection on these other aspects of their lives as well. The remainder of the ‘Results’ section covers some of the consequences of dependable insta-bility for access to these resources.




First, being phoneless was viewed as a major impediment to securing work. As Carter, an unemployed 57-year-old man with HIV, explained,

I would go to any limits just to maintain my cell phone. Because with that, it is easy to communicate and be in touch. I am waiting to hear about a couple of jobs. It’s a must have—a phone service available.

Multiple clients missed full-time or part-time job offers because employers called when the client was out of minutes. By the time a client was able to contact the employer, the position had sometimes already been filled. For example, Jim, a 49-year-old part-time roofer with HIV explained,

Since I don’t have [minutes] all the time, [employers] can’t call me as much. And if they can’t get a hold of me they are going to call somebody else to do the job and that is where I feel lost.

To avoid this problem, clients used the message triangulation technique described above or called potential employers in advance. However, this was inconvenient and was viewed as unprofessional by some clients. In fact, one client called a potential employer to say that he would be “out of town” when he was actually without minutes, in order to avoid the embarrassment of explaining that his cell phone was disconnected. These maintenance techniques reflect the importance of cell phones for client employment, and the complicated nature of disconnection on professional identity.

In addition to free healthcare, many clients used additional social services, such as pub-lic housing and food stamps. Clients noted that annual re-enrollment, setting appointments, and checking food stamp balances were now all automated by phone or online. Most viewed this as a convenience, unless a client was out of minutes. For example, Janice, a 49-year-old woman with HIV, lost her food stamps during an extended period of discon-nection: “I had a recertification on food stamps … they canceled everything … I had to do things all over again because I was late.” The need for routine contact with social service offices is yet another reason why stable cell phone access is critical for the poor, underscor-ing the irony that low-income populations may be most reliant on dependable cell phone access for ensuring survival resources, yet are most at risk of disconnection.

Finally, disconnection strained access to interpersonal social support. As noted previ-ously, some clients had to limit personal conversations to save minutes for calls from doctors and employers. This meant putting a timer on when talking to loved ones or delaying arguments until after 7:00 p.m. When clients were disconnected they also missed family events, birthday phone calls, or connecting about shared traumas. Frank, a 60-year-old man with HIV, told this story:

… when dad passed, the relatives they are mostly in another state, I couldn’t call them, you know. I couldn’t talk to them. And I really didn’t know—I wasn’t happy. I was grieving. And I know they were. And I really felt disconnected and lonely.

Given the importance of social support for health and well-being (Cohen, 1988; Uchino et al., 1996), frequent short-term disconnection could further undermine health. Some clients had family members that were also dealing with health and disconnection



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problems. This added to the need for maintaining connection and yet further complicated the ability to reliably stay in touch.

Discussion

This study uses a conceptual lens of technology maintenance to explore how frequent temporary cell phone disconnection disrupts access to healthcare for the low-income sick and chronically ill. Technology maintenance proposes that as the poor increasingly have initial in-home and public access to technology, the digital divide will begin to center on differences in the ability to maintain that access (Gonzales, in press). Previous research on technology maintenance explored possible consequences of disruptions in cell phone access for health and safety emergencies, finding that the poor often depend on cell phones for health and safety emergencies but access is unstable (Gonzales, in press). These findings add to that literature by underscoring the importance of everyday cell phone communication to manage health and well-being. As Ling (2012) notes in his book, Taken for Grantedness, a mobile phone is a “legitimated artifact and system gov-erned by group-based reciprocal expectations that enable, but also set conditions for, the maintenance of our social sphere” (p. 7). Upsetting these expectations because of repeated, temporary disconnection is often problematic, but has received little attention from researchers or policy makers. Our findings are some of the first to demonstrate how these problems manifest for some of the most vulnerable of society: low-income, chroni-cally ill patients in a wealthy country, such as the United States.

To avoid disconnection, clients in this sample often engaged in ongoing technology maintenance techniques in order to preserve cell phone minutes. Cell phone access was treated as a utility on par with gas money, and something that required constant effort to maintain. Technology maintenance techniques included foregoing personal calls to save minutes for doctors and employers or borrowing phones, especially for calls that “burn through” minutes. For those that were able to maintain cell phone access, this usually came at the expense of other social (e.g. borrowing phones from friends or neighbors) or material resources (e.g. gas money, new shoes for kids).

Despite clients’ best efforts, the inability to consistently maintain cell phone access sometimes led to cycles of dependable instability, or frequent, short-term disconnection. For calls that were time sensitive, such as appointment reminders, temporary disconnec-tion burdened staff and delayed care. Clients and staff had triage mechanisms in place to deal with disconnection, but these were not without consequence. Relying on face-to-face contact or back-up phone numbers was time consuming, frustrating, and threatened privacy. For people with a stigmatized chronic illness, such as HIV, the violation of pri-vacy in the traditional provider–patient relationship was life altering, especially when loved ones consequently withdraw support.

Disconnection did not only disrupt access to healthcare, but also resulted in lost employment, lost access to social services (e.g. housing, food stamps), and lost social connections. Often these effects were more upsetting to clients than disruptions in health-care. This may have been because lost jobs or emotional support was felt more acutely than delayed access to healthcare. Ultimately, of course, client health depends on all of these factors: a strong support system, access to a steady income, and dependable access




to health-care providers. The effects of cell phone disconnection on different aspects of life underscore the importance of this issue and the need to address solutions both inside and outside of the health-care system.

To theoretically buttress this new conceptual framework, we note that evidence of technology maintenance and dependable instability are consistent with a stratification model of digital adoption, which argues that privileged groups will persist in having bet-ter digital access than poor and marginalized groups, which may promote a rich-get-richer effect (Norris, 2001; Van Dijk, 2005). Given that these findings also resonate with recent findings from an Australian study by Justine Humphry (2014) of homeless mobile phone users, it is imperative that policy makers and caregivers see mobile digital com-munication infrastructures as their clients and patients do—as a basic and essential ser-vice. Previous researchers have argued that Internet connectivity must be conceptualized as a gradient, rather than a permanent state (DiMaggio et al., 2004; Lenhart and Horrigan, 2003; Rice and Katz, 2003; Selwyn, 2004). These findings demonstrate that cell phone access operates in the same way, and forebode worsening health inequalities if health-care institutions increasingly rely on digital communication technologies to communi-cate with low-income patients (Eng et al., 1998; Viswanath and Kreuter, 2007). As low-income patients are more likely to be sick and struggle with technology maintenance than wealthier patients, institutions that serve the poor must adopt communication chan-nels that do not require stable access to digital technology to ensure care. To address this, possible interventions are discussed to facilitate three critical outcomes: provision of continuous service, making the service affordable, and creating flexible options for accessing digital technologies (Humphry, 2014).

Institutional and policy solutions

Interviews with staff and clients revealed a variety of possible responses to minimize disruptions in patient–provider communication. First, despite the benefit of having access to government subsidized cell phones, many people needed more than the 250 voice and text minutes a month provided by federally subsidized phones. Although addi-tional minutes on these plans are relatively cheap (e.g. US$5 for 250 additional minutes), few participants were aware of this option, trusted that charges would not suddenly increase, or could pay the extra expense. Possible responses to this issue would therefore be to increase the number of free minutes on government phones, make US$5 or US$10 cards more readily available in the community, or allow for free calls to certain numbers, such as doctors’ or social service offices. This would improve continuity in service and minimize episodes of disconnection.

Second, the lack of clear, accessible information about different cell phone plans may have also contributed to disconnection. Most users did not have the time or resources to research plans that maximize utility and low-cost, resulting in great variability in plan expense. One clinic staff member proposed an in-house training on the most dependable and affordable phone plans available to clients. Synthesized information on the costs and benefits of various low-cost plans that could be delivered through social services would be of great value to many low-income cell phone users.

Third, phone number inconsistency was one of the biggest problems for staff, as noted in the introduction (i.e. Klass, 2010). One solution to this may be use of free community



Gonzales et al. 13

voicemail (e.g. Springwire, http://www.cvm.org), which provides a private, stable voice-mail number for low-income and homeless individuals. Users are given a number and can collect messages when they have access to a telephone. Although this system may not aid with time-sensitive calls, it may mitigate some of the long-term negative effects of frequent disconnection, which often results in new phone numbers.

Finally, staff at organizations A and B discussed the need to update phone numbers at every visit, add lines to paper intake forms to accommodate changing numbers, and change the phrase “emergency phone” to “back-up phone” on intake forms to better ensure access to a local contact. According to staff, these techniques may help mitigate the negative effects of dependable instability on communication between providers and clients.

Limitations and future research

These data reflect certain limitations that are important to address. First, although insights gained from these qualitative interviews were invaluable, they lack generalizability. As most surveys of mobile service do not account for intermittent cell phone disconnection (e.g. CDC, 2013; Zickuhr and Smith, 2012), it is currently difficult to know how many people are unable to rely on their cell phones on a regular basis. Representative survey data measuring the frequency and costs of short-term disconnection are an essential next step in understanding this phenomenon.

These data are also limited by a lack of counterfactual information. Although no-contract users seemed to have problems with disconnection, those same users may have had similar problems with disconnection of landline or contract telephones. Longitudinal representative data that accounts for income and other relevant factors may better eluci-date differences between landline and cell phone disconnection across plans.

Interviewers, clients, and staff involved in this study also shaped data in unintended ways. The sample reflects people that were able and willing to participate in the study at the time it was conducted, and may be biased toward those with more flexible schedules (e.g. retired, unemployed clients). Also, it is unclear how our status as educated, middle-class interviewers may have constrained or encouraged certain responses. Furthermore, most interviews came from Organization A, where clients were HIV+. Although it was useful to explore the needs of this vulnerable population, future research should examine a broader spectrum of the population.

Finally, the experience of disconnection and its consequences are surely different in the United States than they are in other countries. Previous researchers have observed maintenance practices outside of the United States, but have not applied a technology maintenance framework to those findings (Horst and Miller, 2006; Donner, 2007; Ureta, 2008). Future research should examine the applicability of technology maintenance in different countries to better establish the validity of this concept, and its utility in cross-cultural research.

Conclusion

The editorial by Dr Klass (2010) in the introduction implies that health-care profession-als are aware of the health risks associated with frequently changing and disconnected cell phone numbers. Yet short-term phonelessness is not being captured by representative




surveys of telephone access, which could be useful to both policy makers and public health officials (e.g. CDC, 2013; Zickuhr and Smith, 2012). Representative data are needed to fill this gap. Until then, our findings demonstrate that dependable instability is linked to disruptions in access to healthcare. Furthermore, these data suggest that the increased burden of disconnection extends beyond healthcare to affect the entire support network of people in poverty. These findings support technology maintenance predic-tions that low-income populations struggle to maintain digital access after ownership and public availability of new technologies are realized. Solutions to this problem may include providing more minutes on government subsidized cell phones, or allowing free calls to doctors’ offices. Although these findings begin to illustrate the problem, much additional work must be done to better understand short-term cell disconnection and minimize the negative implications it may continue to have over the coming decades.

Acknowledgements

We are indebted to the staff at the participating healthcare organizations for their collaboration and support on this project.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Notes

1. Early on in the interview process, it became clear that many people did not use the word “dis-connection” to describe temporary disruptions in cell phone access. This may be because the word “disconnection” is associated with a more permanent state of being without telephone access. Once we realized this, the interview was revised to ask if clients had ever “been without minutes.” We use the terms “disconnection,” “phonelessness,” and being “without minutes” interchangeably throughout the article.

2. Staff had several protocols in place to contact clients in emergencies; thus disconnection did not disrupt emergency care, but rather frustrated daily procedures and delayed everyday health-care access.

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Author biographies

Amy L Gonzales received her PhD in Communication from Cornell in 2010. Her research exam-ines the effects that communication technologies have on individual identity, social support, and health.

Lindsay Ems is a Doctoral Candidate in the Media School at Indiana University. Her research explores information communication infrastructure design for the empowerment of marginalized communities.

Venkata Ratnadeep Suri is a Post-Doctoral Fellow at The Wee Kim Wee School of Communication and Information, Nanyang Technological University, Singapore. He received his PhD in Mass Communication from Indiana University at Bloomington in 2013. His research examines the effects of communication technologies on health behaviors and outcomes, and on knowledge work practices.



Documents

New Media Society 2014 Gonzales