The year 2006 marked the 25^th year of the presence of Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/AIDS) in the United States (US). Glynn and Rhodes (2005) predicted that by 2006, more than one million persons would be living with HIV/AIDS in the US, and an estimated 40,000 new HIV infections would occur during that year. Hall, Long, Phodes, and Prejean (2008) have now reported that the year 2006 actually saw 56,300 new cases of HIV infection. According to the Centers for Disease Control (CDC), the two fastest growing segments of the population at risk for contracting new infections are the men having sex with men (MSM) while using injectable drugs, and the heterosexual population (CDC, 2006).

In the beginning of the HIV/AIDS epidemic, most persons became ill quickly and died within 18-24 months of initial diagnosis. However, with the advent of the protease inhibitors and other new medications, HIV/AIDS has become a medically complex, chronic disease (Scandlyn, 2000). HIV/AIDS clients today continue to require assistance with housing, mental health services, medication adherence, managing side effects of the medications, transportation to and from medical providers, and food subsidies. Coordination of care amongst medical and social service providers has become essential for these chronically ill clients.

...clients managing HIV/AIDS on a long-term basis, especially those in rural areas, have a difficult time obtaining healthcare and monitoring due to the shortage of nursing and other healthcare providers. Given the complexity of the disease process, HIV/AIDS clients often experience many co-morbidities. These co-morbidities may include changes in nutritional status leading to weight changes; fluctuations in blood pressure; and metabolic disorders, such as diabetes, due to co-existing treatment regimes. Opportunistic infections that need frequent intervention and monitoring also affect this group of individuals (Miller, 2000). Unfortunately, clients managing HIV/AIDS on a long-term basis, especially those in rural areas, have a difficult time obtaining healthcare and monitoring due to the shortage of nursing and other healthcare providers. A recurrent theme at the California Department of Public Health/Office of AIDS Case Management Program and Medi-Cal Waiver Program Project Directors meetings has been the lack of registered nursing staff to fill the available nursing case management positions throughout the state due to limited resources of providers/agencies and flat funding and/or funding restrictions for the programs (B. Hanna, personal communication, October 16, 2006). This article will describe telehealth nursing, present a study that explored the use of telehealth technology, report and discuss the study findings, and conclude that the use of telehealth technology has the potential to effectively assist case management and home health agencies manage their HIV/AIDS client caseloads, increase responsiveness to their clients’ changing medical conditions, and address the ongoing nursing shortage

Telehealth Nursing

Use of the term ‘telemedicine’ has long been associated with providing medical services to distant or remote clients using some type of technology, such as the telephone, audio/video equipment, or the Internet. The American Nurses Association, in choosing to use the term ‘telehealth’ rather then ‘telemedicine,’ describes a broader use of telecommunications technologies in healthcare which include nursing roles and functions (ANA, 1997). Interactive, home telehealth is the term used in the current study and is described by Kinsella as occurring when “[P]atients and health care providers use two-way interactive audio and/or video to collect and transmit clinical data. This service provides remote assessment, education and data collection” (2003, p. 26).

Audio/video systems, initially confined primarily to the collection of vital signs, now allow nurses to provide palliative care, rehabilitation, case management, and chronic disease management (Kinsella, 2003). Advances in telehealth technology have contributed to the use of telehealth as a viable solution to both the shortage of nurses and limited healthcare resources by allowing nurse case managers and clients to establish and maintain direct and ongoing communication with their clients over geographical distances (Kinsella; Russo, 2001).

There is an abundance of literature describing perceived benefits and documented successes of combining telehealth technology and nursing. Geographic isolation and limited preventative services due to lack of medical specialists have been cited as the rationale for implementing telehealth services to underserved populations (Reed, 2005). Peck has argued that telehealth can be used to “help save money and improve care through efficient and accurate patient tracking, and by retaining experienced and dedicated nurses” (2005, p. 339). Positive outcomes associated with using telehealth technologies in various client populations have been well documented. Telehealth technologies have been used effectively for outpatient management of cancer patients with new ostomies (Bohnenkamp, McDonald, Lopez, Krupinski, & Blackett, 2004), to decrease hospitalizations in congestive heart failure patients (Kobb, Hoffman, & Lodge, 2003), to provide pre-operative education to rural patients having total joint replacement (Thomas, Burton, Withrow, & Adkisson, 2004), to assist acutely ill patients transition from hospital to home (Marineau, 2007), and to provide care to elders and their caregivers in rural communities (Buckwalter, Davis, Wakefield, Kienzle, & Murray, 2002).

Despite the documented benefits of the general use of telehealth technologies, there is a paucity of data on the use of telehealth technology by nurses for HIV/AIDS clients. Becker (2002) did describe a federally funded telemedicine project involving a group of HIV/AIDS clients in New York City. The nurse in this project acknowledged her satisfaction with the streamlined visits and the convenience of monitoring clients from the office, thereby eliminating time previously spent driving and parking. She believed she truly made a difference in client outcomes, despite not being physically present in clients’ homes. Unfortunately research data for this telehealth project is not available. Additionally, a recent qualitative study (Marineau, 2007) found that acutely ill patients transitioning from hospital to home were satisfied with telehealth and expressed an interest in having telehealth access in the future. This study used a qualitative method to study the use of this technology with HIV/AIDS clients.

In response to the lack of literature, and especially the lack of qualitative studies, describing nurses’ use of telehealth technology with HIV/AIDS clients, the qualitative, descriptive study reported below sought to explore the use of telehealth technology to assist case managers to effectively manage their caseloads of HIV/AIDs clients, increase responsiveness to their clients’ changing medical conditions, and serve as a partial solution to the ongoing nursing shortage.

The Study

This qualitative, descriptive study used face-to-face interviews with six participants to assess what the client experienced when a nurse used telehealth technology to conduct case management visits.

Sample

The target population was HIV/AIDS clients living in the study’s rural service area, which constituted seven counties in northern California. Volunteers were sought purposively using the following inclusion criteria: a medical diagnosis of HIV/AIDS, ability to manage the technology, the assurance of safety of the equipment in the home, and agreement to participate in the evaluation interview. Home Health Care Management, Incorporated, located in Chico, California, provides case management services to HIV/AIDS clients. This agency assisted in finding study participants. Based on inclusion criteria, potential participants were identified by the agency nursing case managers. Due to funding restrictions, the number of participants for the study was limited to six participants. Once potential participants were identified, case managers presented a brief, verbal summary of the study and asked if the principal investigator of the research team could contact the client to provide further information. Two females and four males volunteered to participate. Ages ranged from 34-58 years. Clients had varying levels of computer skills and experience, with two clients owning a home computer before the study started.

Ethical Considerations

Approval from the appropriate State of California Institutional Review Board, namely, The Committee for the Protection of Human Subjects, California Health and Human Services Agency, was obtained prior to the commencement of the study. Approval to conduct the study was also obtained from the Centers for Infectious Disease, California Department of Public Health, Office of AIDS. No unusual or sensitive ethical considerations were noted. An explanatory statement and photograph of the equipment was given in person to all clients. Written informed consent was obtained prior to the placement of equipment in the home and the collection of any data.

Data Collection/Interviews

This study utilized American TeleCare equipment, including both a provider station and a patient station. Peripheral equipment used by the nurse included a stethoscope, sphygmomanometer, scale, glucometer, camera, and floor lamp. Thermometers were provided to all participants. A video monitor in each home connected to a computer video monitor in the agency office. When a scheduled visit was due to begin, the client called the agency on a toll-free line to let the nurse know he/she was ready for the visit. The nurse then called the client back using the telehealth base-station equipment in the agency office that connected to the client’s home station. This equipment enabled the nurse and the client to see each other. Diagrams were provided to the clients showing them where to place the stethoscope in order to hear lung, heart, and bowel sounds. Using the peripheral equipment the nurse could collect the following data: blood pressure, temperature, heart rate, lung sounds, blood sugar levels, abdominal sounds, weight, nutritional status, skin condition, and opportunistic infections. Discussions included recent hospitalizations or emergency room visits, current medications, and general health status, including any problems the client may have encountered since the last nurse case management visit.

Diagrams were provided to the clients showing them where to place the stethoscope in order to hear lung, heart, and bowel sounds. Clients used the telehealth technology in their homes for a period of four months. Funding allowed for the purchase of three client monitors, therefore two data collection periods were used with three clients participating in each period, which extended data collection to a total of eight months.

Interviews were conducted after the four-month trial of the equipment and removal of the monitoring station. All interviews took place in the client’s home where privacy was maintained. Interviews were semi-structured using five basic, yet broad questions that allowed clients to share their individual experiences. Interview time averaged 20-30 minutes. Although an indefinite period of time was allowed for the interviews, all interviews were completed in 30 minutes or less. Questions were identified that would help assess client satisfaction with telehealth visits in-order-to determine whether this technology was a viable way to manage caseloads, including a client’s changing medical conditions, and also address the nursing shortage. Examples of questions included:

1. What was it like to use the equipment for your nursing visits?
2. What was the best part about using the equipment?
3. What was the worst part about using the equipment?
4. Was the visit different than having the nurse actually there, if yes how?
5. Did you require additional help with the equipment?

Although the main focus of this study was on client perceptions, the nurse case manager was also interviewed.

Data Analysis

Data sorting and management was facilitated by the computer program NVivo (Richards, 1999). Initially transcripts were read and reread for recurring patterns in the data. Beginning descriptive codes were then entered into NVivo. This initial process involved considering what words meant within the smaller context of specific questions as well as the broader context of the entire interview. This process enabled the researcher to reflect on the recurring patterns in the data. Pattern areas were then reviewed following the coding of all interviews. At this time discrepancies were noted and pattern areas renamed, collapsed, and clustered to accommodate more abstract themes. This process of thematic development, a process developed by Thomas and Pollio (2002), can also be used when analyzing phenomenological data. Thomas and Pollio define themes as “patterns of description that repetitively recur as important aspects of a participant’s description of his/her experience” (p. 37).

Rigor

All interviews were tape recorded and transcribed verbatim. The computer program NVivo (Richards, 1999) was used to enhance rigor so that identification codes and specific data could be linked to the complete original transcript. To decrease bias, a member of the research team not employed by the case management/home health agency was responsible for obtaining informed consent and conducting all interviews. An audit trail was kept to record all analysis decisions. Confirmability (Streubert-Speziale & Carpenter, 2003) was demonstrated by having another member of the research team review the analysis process. Additionally, all analysis decisions were also reviewed by an outside expert in qualitative research.

Findings

Although all participants in the study had the same medical diagnosis, sample variation was evident in terms of age, computer-technology expertise, and gender. However, the experiences of these clients in using telehealth technology were similar as evidenced by the common themes expressed by the clients. Findings clustered around three major themes: (a) missing the nurse, (b) being satisfied, and (c) drawbacks, each of which will be described below.

Missing the Nurse

Participants consistently expressed a desire to have the nurse make actual face-to-face contact via home visits. Reasons given included a desire for an initial connection to develop trust, social interactions, and/or emotional support. The hallmark of home health agency services is client contact with healthcare professionals. When nursing case management services were delivered via computer technology, two clients responded with the following comments:

I probably miss not having somebody to come out every once  in a while and do their thing with me here…I didn’t really like it, but like I said, I wished I could have had her here instead of on the screen. But it was alright.

I really would prefer the nurse, because I’m more into contact with people, because I don’t get many visitors usually so when I do get them it’s good, because I don’t drive, I don’t go anywhere really.

All participants missed having the physical presence of the nurse during the case management assessment.

When asked what was different about not having the nurse come to her house, one client responded:

I’m a whine baby, I like sympathy. I couldn’t get a hug or you know and she wasn’t allowed to come see me personally while I had the machine here and I missed that personal touch.

For this participant the lack of physical touch and presence of the nurse was critical to her feelings of satisfaction with the visit.

Another client saw value in an initial visit with the nurse to set up and begin a relationship. This client suggested using the technology as support for some but not all visits:

A combination probably maybe even quarterly would be fine. But see, I set up in my relationship with them prior to the Telemed, but to start out… I guess it’s about getting to know the people and being able to be completely honest and frank, you know in your conversation.

This participant preferred to begin a nurse/client relationship using a face-to-face meeting rather than using only telehealth technologies.

One client commented on the shortness of the telehealth visit and the lack of social interaction:

Mainly talking because you know usually the telecom went 10 minutes or so, when a nurse comes she’s at least here for half hour or 45 minutes, social talking you know, it’s more personal than just doing it over teleconference.

...the use of technology did not provide the same level of social interaction as face-to-face visits would have provided. This comment demonstrates the importance of the social nature of a nursing visit and that the use of technology did not provide the same level of social interaction as face-to-face visits would have provided.

The theme of missing the nurse evolved for a variety of reasons, but the majority of clients in the study explained that in some way they missed the physical contact of the nurse in the home. For these clients the technical aspect of the visit was easily accomplished with the use of technology; however the human touch was missed.

Being Satisfied

Being satisfied encompassed several subthemes that identified how different ways of using the telehealth equipment was seen as beneficial by these clients. It is interesting to note that although clients missed the nurse, as noted in the previous theme, they all enthusiastically said they would be willing to have the equipment back in their house to use again on a short term or more permanent basis. The idea of being able to see the nurse and have the nurse on the monitor see them was in part what increased satisfaction, as clients felt this was an improvement over a regular telephone call if they had questions or became ill. Three sub-themes contributed to being satisfied: (a) mastering the technology, (b) convenience and (c) it gets the job done.

The idea of being able to see the nurse and have the nurse on the monitor see them was in part what increased satisfaction...Mastering the technology. Although initially mastering the technology was an area of potential concern for the home health agency, it proved to be of little consequence to the clients. There were considerably more skills for the agency and the nurse to master. These skills included the mechanical set up of the base station, developing a teaching plan for clients, determining privacy and security protocols, and troubleshooting the equipment. Only one client required additional help, beyond that given by the nurse, with the initial set up. This client asked a friend to be present during installation and initial training to provide support when she was on her own. All others were able to master the equipment easily and had no difficulty using it during the course of data collection. Typical comments included, “The fact that I was able to use it and not have any problems with it. Probably I guess is the best thing,” and “It’s small, doesn’t take up a lot of space, and it doesn’t take any education really to use it, it’s very simple.” One participant added:

…but as far as the patient goes all you do is follow what she asks you to do. The equipment is very simple to work. Very reliable. Every time we confirmed information that was showing on the LED read out on the machine, it jived with the information they were getting. So I knew the information she was getting was accurate and I just thought it was simple and safe. Those are my best things, for me in particular I think it was the best thing to have in my home.

Participants found the equipment easy to use and not intrusive in their homes.

Convenience. Convenience seemed to contribute to clients’ sense of satisfaction. Clients liked both the convenience of not having to fit in with a busy nurse’s schedule that included organizing driving time and visiting other clients. They appreciated the opportunity to quickly set up a telehealth visit. The time of day was also a factor that supported convenience, as noted by the two clients who commented on this convenience:

Sometimes she did them on days when I was off but she was able to do it even when I got off work. You know what I mean, it was still more convenient for her being in the office, it wasn’t where she had to be here in [town 30 minutes away] and see me like she was seeing her other clients. So it didn’t interfere with her so much and it didn’t interfere with my life style. I was able to continue to work, and keep my appointments with her.

Clients were pleased to have mastered the equipment. They found it easy to use and convenient.

It was very convenient. When they called, the nurse didn’t have to make a scheduled appointment or anything to come out. I could talk to her and see her on the computer, which was very nice.

Clients were pleased to have mastered the equipment. They found it easy to use and convenient. These factors were all important in determining whether they were satisfied with this technology in place of home visits on an ongoing basis.

It gets the job done. The positive aspects of this technology as identified by clients was supported by the nurse who took part in the study, especially in terms of the convenience of decreased driving for routine visits of stable clients. Telehealth visits increased the client’s personal privacy during a visit. Also, there was an added ‘security’ in that the equipment was there if they needed to make additional contact with the nurse and schedule a telehealth visit as opposed to just a telephone call. An additional benefit was the health safety issue, in that  telehealth visits resulted in one less person coming into the home of these clients when they might be vulnerable to infection, such as at a time when they were experiencing a low T-cell count making them more susceptible to colds and flu. Two typical comments included:

Well sometimes the [home] visits were a little more personal; let me put it that way. With the Telemed it seemed a little bit more professional, right to the point. There was not extra talking.

This way when we know it’s over, she’s done, I’m done, we say our goodbyes until the next month. I cover the machine up and it’s basically invisible until the next time I need to use it.

Getting the job done highlighted the professional nature of technology. Telehealth visits, although somewhat more impersonal than having the nurse come to the client’s home, streamlined the nature of the visit and included no ‘fluff’ for either the nurse or the client in the time spent.

Drawbacks

Drawbacks were mentioned as clients talked about the equipment. It is interesting to note that clients did not talk about missing the nurse when asked about drawbacks or negative aspects of using the equipment. Rather missing-the-nurse comments were raised when asked what it was like to not have the nurse come to their house. The minimal drawbacks noted related to the equipment as seen in the following three quotes:

Well, there was really no bad thing about it. Other than the fact that every once in a while it wouldn’t go through and we’d have to do it all over again. But no.

Nothing at all really. Taking an extra plug in the wall because I’ve got so much electronic stuff in my bedroom. But other than that, nothing.

I think it took up a little bit of room from my mother, that’s about it. Otherwise you could barely tell it was there. Because it was covered.

One client identified privacy as an issue as the equipment was in a living area that could be seen by visitors. Another client didn’t offer a lot of explanation but mentioned that it just wasn’t the same, saying, “It felt different.”

Drawbacks focused mainly on simple equipment issues, most of which were fixable or were not substantial enough to cause concern for the client. Other types of drawbacks were revealed under more substantive themes, such as missing the nurse and visits being less social, as discussed above. Although participants did not complain about any difficulty in seeing the nurse via the equipment, the nurse, who interacted with clients and who was also interviewed, noted she had some difficulty with the lighting in clients’ homes in terms of clear and accurate visuals. This lighting problem might need further attention in terms of continued use of telehealth equipment, as appropriate lighting is necessary to allow the nurse to clearly see the client. Poor lighting has ramifications in areas such as visualizing wounds, rashes, or bruising.

Discussion

Very few studies have evaluated the use of telehealth technologies with HIV/AIDS clients, and only one of these studies was found to utilize a qualitative method. Hence this qualitative study sought to explore the use of telehealth technology to assist case managers to effectively manage their caseloads of HIV/AIDs clients, increase responsiveness to their clients’ changing medical conditions, and serve as a partial solution to the ongoing nursing shortage. This section will discuss the clients’ reports of missing the nurse and their perceptions of satisfaction and drawbacks associated with the telehealth technologies.

Missing the Nurse

Agrell, Dahlberg and Jerant (2000), conducted a pilot study with 15 participants to elicit views about home telecare. Their 34 item survey also allowed for open-ended responses to clarify choices for a select number of forced-choice responses. These authors also reported that participants found that telehealth visits are streamlined and lack social support for isolated, lonely clients. Our study supports this finding, as participants consistently expressed a desire to have the nurse come to the home to make actual face-to-face visits so they could develop trust, socialize and/or receive emotional support. Recognition of the importance of developing trust and providing social support for a client impacts the development of telehealth protocols with HIV/AIDS populations. Clients might benefit if protocols would include a time period during which the nurse could develop rapport with the client prior to the initiation of telehealth visits. An agency may also want to consider policies that allow for some face-to-face visits with clients, along with the telehealth visits. Some face-to-face visits may well benefit these HIV/AIDs patients.  

Satisfaction and Drawbacks

Some clients felt using the telehealth equipment was far superior to having the nurse come to their home, as using the equipment allowed for health protection and easier scheduling. It is important to note that in this study, concerns about missing the nurse’s in-home presence during the visit did not influence client satisfaction with the equipment as all clients who used the telehealth technology indicated they would have the equipment back again if given the opportunity. Our findings, that clients overall were satisfied with telehealth visits, support the conclusions reached by Agrell et al., (2000).

The use of telehealth technology can help provide nursing case management services in a cost-effective manner. Ease of mastering the technology clearly assisted clients’ acceptance of the telehealth equipment. All clients indicated they required no further assistance beyond the initial set up directions. Ease of mastering the technology was also found by Kobb, Hoffman, and Lange (2003), but is in contrast to Agrell, et al., (2000), who found some clients or caregivers struggled with the technology.

The lack or shortage of nursing staff, increases in travel costs associated with rising gasoline prices, and flat funding and/or reduction in reimbursement for HIV/AIDS services, have prompted agencies to explore alternative methods of providing care to their clients, such as using technology to save money. Nurse productivity can be increased by using telehealth technologies and thereby increase the number of clients a nurse case manager can see in a day. In rural areas, especially, nurses may need to spend an hour or more driving both to and from the client’s home. Limiting driving can save nurses’ time and decrease reimbursable mileage expenses. The continual flat funding and possible eroding of funding from the federal and state agencies that administer the Ryan White Care Act Program monies, constitute a significant impetus for agencies to find ways to decrease costs and avoid adding additional staff. The use of telehealth technology can help provide nursing case management services in a cost-effective manner.

The efficiency of the telehealth visits was articulated by all participants. Clients in this study felt that the visits using the telehealth technology were more ‘professional’ and had less of a social nature. However, the following questions were also raised by this research:

Does nursing want to move in the direction of being perceived as more ‘professional’ by the client using telehealth visits which are streamlined and faster?

Are these telehealth visits performed at the expense of a client’s need for a more holistic and personal interaction, such as might occur with a face-to-face in-home nursing visit?

The streamlined nature of the telehealth visits may be related to the lack of the nurse’s physical presence in the home. Yet HIV/AIDS clients are vulnerable for many reasons; it may be that the convenience of technology does not outweigh the benefit of human contact.

Previous research has not looked at client perceptions of providing nursing case management via telehealth technologies for an HIV/AIDS population. In this study, the ease at which the equipment could be used by the client was demonstrated and the clients’ expressed satisfaction with the nursing services provided. This study, however, also raised new questions regarding whether it was appropriate to use only telehealth technology for all levels of visits. Clients suggested that there might be value in structuring the initial assessment visit, and possibly other visits as face-to-face visits so as to strengthen the client-provider relationship and provide support to the clients.

Limitations and Additional Research Needed

Future research is needed to clarify the relative value of the social interaction and emotional support provided by in-home visits.Additional research related to the feasibility of using telehealth technologies with the HIV/AIDS client population using larger samples, longer data collection periods, and the use of a combination of in-home and telehealth visits is needed. Future research is also needed to examine the relative value of the social interaction and emotional support these clients reported missing when the nurse did not come to their home. Additional research could provide information to guide the formation of policies and procedures that would sustain telehealth as a successful adjunct for delivering nursing case management to HIV/AIDS clients.

Conclusion

In summary, the use of telehealth technology can be an effective tool for case management and home health agencies to use to effectively manage their caseloads, improve on responsiveness to clients’ changing medical conditions, and serve as a partial solution to the ongoing nursing shortage. The return on investment of the technology can be seen as reducing the costs associated with nurse and client face-to-face visits. Future research is needed to clarify the relative value of the social interaction and emotional support provided by in-home visits.

Acknowledgements

The authors acknowledge the California Consumer Protection Foundation for funding this study. The authors also acknowledge the Centers for Infectious Disease, California Department of Public Health, Office of AIDS, for its guidance in the IRB review process at the state level. Please note that the authors/investigators are solely responsible for the research and statements made in this document and that the Califronia State Office of AIDS is not responsible for this research or for the findings. The authors thank the clients who gave of their time to participate in telehealth visits and post-visit interviews.

Authors

Jennifer Lillibridge, RN, PhD
E-mail: jlillibridge@csuchico.edu

Jennifer Lillibridge received both her baccalaureate and master’s degrees from California State University, Chico, CA, and her doctoral degree in education from Monash University in Australia. Dr. Lillibridge has extensive experience in qualitative research methods. Over the past six years she has collaborated with nurses at Home Health Care Management Incorporated in Chico, California, in the research areas of fall prevention and telehealth.

Barbara Hanna, RN, BSN, CCM
E-mail: bhanna@homehealthcaremgmt.com

Barbara Hanna received her Bachelor of Science degree from California State University, Chico, CA. Ms Hanna is the founder and president of Home Health Care Management Incorporated in Chico, California. The agency is a licensed and Medicare Certified Home Health Agency, with over 100 employees. Since 1992, she has been contracted with the California State Office of AIDS to provide home- and community-based services to HIV infected clients in a seven county region of Northern California.

© 2008 OJIN: The Online Journal of Issues in Nursing
Article Published November 26, 2008