Home Telehealth: Facilitators,Barriers,and Impact of Nurse Support Among High-Risk Dialysis Patients

Abstract

Objective: The value of home telehealth self-monitoring with nurse oversight has been demonstrated; however, there is a dearth of objective documentation of patients' experiences with such a model. We used a mixed methods approach to examine the value of home telehealth monitoring with remote care nurse (RCN) support from the perspective of participants in our study. Materials and Methods: Thirty-three patients who used remote technology to self-monitor their health at home participated in a semistructured interview. The instrument was designed to help identify facilitators and barriers and to evaluate patient satisfaction with and effectiveness of home telehealth self-monitoring. Results: Overall, patients reported high levels of satisfaction with RCN support as they received efficient feedback, were better able to identify changes in their health status, and experienced enhanced accountability, self-efficacy, and motivation to make health behavior changes. The most frequently cited barriers related to malfunctioning equipment or trouble with Internet connections, forgetfulness, and feeling poorly. Conclusions: The results suggest that home telehealth self-monitoring with RCN support is effective in empowering patients to take a more active role in their healthcare and indirectly improve quality of life for those living with chronic illness.

Introduction

Chronic diseases are the leading causes of death and disability¹ and account for seven out of 10 deaths in the United States each year.² More than half of these deaths are due to heart disease, cancer, and stroke.² Treatment for patients with comorbid chronic conditions costs up to seven times as much as treatment for patients with only one chronic condition.³ Emerging evidence supports the feasibility and cost-effectiveness of using home telehealth monitoring to promote health and chronic disease management.^4

–7 Results from a randomized controlled trial by Berman et al.⁸ demonstrated improved health outcomes and cost-effectiveness in high-risk patients with end-stage renal disease using remote technology (RT) for home health monitoring with remote care nurse (RCN) support. Self-assessment procedures used as therapeutic interventions to facilitate behavioral changes and yield positive treatment outcomes have been reported.^9

–12 It has also been suggested that the quality of the relationship between patient and healthcare provider (e.g., nurse, physician) is an important determinant of treatment adherence¹³ and may promote self-management and better outcomes.¹⁴ Numerous studies, however, have identified barriers to behavior change and self-management. Barriers to behavior change include patients' feelings of being a failure or having no control or believing that there are no consequences to their actions.¹⁵ In addition, patients face several obstacles (some self-described) in self-management programs (e.g., pain, diabetes, chronic conditions), such as inadequate family support,^16,17 transportation, pain and fatigue,^17,18 low self-efficacy,¹⁶ depression,¹⁷ and laziness or lack of discipline.¹⁸

Previous studies have shown that telemedicine is acceptable to patients; however, Mair and Whitten¹⁹ argued that they are more technology-focused than patient-centered. They therefore underscored the need for more research on patients' perceptions of how telemedicine impacts interactions with their healthcare providers. Thus, the goals of this study were (1) to evaluate patients' perceived effectiveness of and satisfaction with home telehealth self-monitoring and RCN support and (2) to identify perceived facilitators and barriers encountered with RT use. Although patient satisfaction is not an objective measure,²⁰ it is an important indicator of quality of nursing care.²¹ In addition, Tousignant et al.²² found that high levels of satisfaction with healthcare increase patients' motivation and treatment adherence. For the purposes of this study, we explored whether home health monitoring and RCN support were viewed favorably or unfavorably; we also asked patients how home health monitoring impacted their health as well as their personal lives as measures of satisfaction.

Materials and Methods

Study Design

This study, which used a mixed methods approach, analyzed patients' perceptions of the randomized controlled trial conducted by Berman et al.⁸ Participants were recruited from the RT intervention group (self-monitoring of physiologic measurements and answering 10 subjective health questions specific to end-stage renal disease and dialysis treatment). Semistructured audiotaped interviews were conducted to explore participants' perspectives on the effectiveness of, satisfaction with, and facilitators and barriers encountered in home telehealth monitoring with concomitant RCN support. Content analysis was used to analyze transcribed audiotaped interview data. In addition, we designed and administered a survey to measure the beliefs of and likelihood that people would use telehealth equipment for home health self-monitoring.

Measures

The Remote Technology for Home Health Monitoring Interview (RTHHMI) was developed for this study, as there is no validated instrument that specifically examines patients' experiences with home telehealth with RCN support. The RTHHMI questions were first drafted by the second author (P.J.C.) and later reviewed independently by the first (D.E.M.) and third (S.J.B.) authors. An iterative review process was used until consensus was obtained among the authors regarding the face validity of the questions. The RTHHMI is a semistructured interview schedule composed of two parts. Part 1 of the interview includes 13 open-ended questions that prompt participants to elaborate on their experiences: Questions 1–4 evaluate participants' satisfaction and perceived facilitators and barriers in home telehealth monitoring, Questions 5–8 examine satisfaction and perceived impact of RCN support, Question 9 (a–c) examines attitudes and beliefs about self-monitoring and use of RT to manage chronic health conditions, and Questions 10–13 explore participants' perceived impact of checking measurements on their life and health. Part 2 of the interview consists of nine close-ended questions with a Likert-type response scale, ranging from “Very likely” to “Never.” These nine questions aim to measure perceived effectiveness (Questions 14–18) and the utility of home telehealth monitoring for illness management (Question 19). In addition, Part 2 of the survey evaluates the importance of nurse support in RT use (Question 20) and the likelihood that participants would recommend a friend (Question 21) and continue to use RT (Question 22) after the study period. Sociodemographic data were also collected: gender, age, marital status, employment status, ethnicity, primary language, residence status, educational attainment, and current annual income.

Participants

Thirty-three interviews were completed from a pool of 36 who were eligible. One patient refused, 1 changed his mind after consenting, and 1 did not respond to attempts to schedule the interview. Three caregivers completed interviews in lieu of patients as 1 patient died before being consented, 1 patient died after consenting, and 1 patient was unable to participate because of a debilitating medical condition.

Procedure

This study was approved by the Western Institutional Review Board. Twenty-eight of the interviews were conducted in patients' homes. Two were conducted outside one of the participating dialysis units, one took place at a park near the patient's home, one was completed at the patient's workplace, and one took place while the patient was dialyzing. The interviews, which were recorded using a digital recorder for later transcription, were conducted by a doctoral student in sociology from the University of Hawaii at Manoa and the co-principal investigator on this study (P.J.C.).

Content and Statistical Analysis

Interviews were transcribed in their entirety by the authors of this study. Analyses of the RTHHMI data involved coding and summarizing the qualitative responses (Questions 1–13) and the quantitative responses (Questions 14–22). For Questions 1–13, the first coder organized the responses for each question and generated a set of themes with specific codes. Next, the second coder independently coded the responses by theme. Both raters then compared the themes and clarified any discrepancies in the terminology of the themes. Both coders then rated the frequency of each theme for each open-ended question. The coders evaluated discrepancies in the frequency of specific themes, and, when appropriate, an average count of responses was calculated for the specific theme. For Questions 14–22 of the RTHHMI, frequency counts and percentages were calculated. Descriptive statistics were computed for the demographic and clinical variables.

Results

Clinical and Demographic Characteristics

Table 1 shows the sociodemographic and pertinent clinical characteristics of the participants (some categories have been collapsed). In terms of clinical characteristics, 32 of the 33 participants had at least one comorbid medical condition (1 participant had none); the total number of comorbid conditions for each ranged from one to four, with a mean of 2.4. The number of days on dialysis ranged from 728 to 4,338, with a mean of 1,747.2 days, median of 1,520 days, and standard deviation of 970.2 days.

Table 1.

Sociodemographic and Clinical Characteristics (n=33)

	FREQUENCY	%
Gender
Male	20	60.6
Female	13	39.4
Age (years)	87–37^a	60 (11.6)^b
Marital status^c
Married	19	57.6
Single^d	14	42.4
Employment^c
Retired	15	45.5
Unemployed (owing to disease)	8	24.2
Retired (disability)	4	12.1
Homemaker	3	9.1
Part-time (medical leave of absence)	2	6.1
Employed fulltime	1	3.0
Ethnicity
Filipino	12	36.4
Pacific Islander	9	27.3
Native/part-Hawaiian	3	9.1
Mixed race	3	9.1
Asian (Chinese, Japanese, Korean)^c	5	15.2
White	1	3.0
Education^c
Less than 8th grade	5	15.2
High school graduate or less	13	39.4
Some college	6	18.2
≥Bachelor's degree	9	27.3
Primary language
English	22	66.67
Other	11	33.33
U.S. residency
Yes	28	84.8
No	5	15.2
Annual income^c
<$10,000	14	42.4
$10,000–20,000	12	36.4
≥$21,000	7	21.2
Comorbid condition (ICD-9)
HTN (403)	30	91.0
Diabetes (250)	25	75.8
IHD/CAD (414)	11	33.3
CHF (428)	11	33.3
CVD (434)	3	0.1
PVD (440.2)	3	0.1

Maximum–minimum.

Mean (standard deviation).

Categories collapsed.

Including separated, divorced, and widowed.

CHF, chronic heart failure; CVD, cardiovascular disease; HTN, hypertension; ICD-9, International Classification of Diseases, Ninth Revision; IHD/CAD, ischemic heart disease/coronary artery disease; PVD, peripheral vascular disease.

RTHHMI: Semistructured Interviews (Questions 1–13)

Table 2 reports the major themes derived from the 33 transcribed semistructured interviews.

Table 2.

Open-Ended Questions: Experience of Remote Technology with Remote Care Nurse Support

RTHHMI QUESTIONS 1–13,^a MAJOR THEMES	N=33 (%)
1. Three things you don't like about using RT for self-monitoring
Satisfied, no problems	15/33 (45.5)
2. Three things you do like about using RT for self-monitoring (facilitators)
Immediate feedback	27/33 (81.8)
Identified health concerns	9/33 (27.3)
Enhanced accountability, efficacy, and motivation	9/33 (27.3)
3. Suggestions for making home health monitoring easier
No suggestions; very satisfied	14/33 (42.4)
Expand technical applications^b	5/33 (15.2)
Include other patient populations	4/33 (21.1)
4. Reasons preventing you from taking health measurements (barriers)
Technical problems	9/33 (27.3)
Difficulty remembering	7/33 (21.2)
Feeling sick, weak, tired	7/33 (21.2)
5. Experiences working with RCN
Professional, positive demeanor and attributes	33 (100)
6. Satisfaction with assistance and support of RCN
High levels of satisfaction	33 (100)
7. Three things you don't like about contact with RCN
None	0 (0)
8. Three things you like about contact with RCN
Efficient feedback and guidance	21/33 (63.6)
Pleasant and supportive	12/36 (36.4)
Genuine concern and caring	10/33 (30.3)
9. Has home health monitoring make any difference to your health?
Self-awareness of health	23/33 (69.7)
Learned illness self-management skills	22/33 (66.7)
10. Has home health monitoring changed the way you live?
Gained self-efficacy	14/33 (42.4)
11. How home health monitoring changed the way you think/feel about yourself
Promoted accountability	10/33 (30.3)
12. How home health monitoring changed the way you look at life
Provided hope and motivation to improve health	10/33 (30.3)
13. Anything else to share?
Extend project	8/33 (24.2)
Keep up the good work	6/33 (18.2)

Original questions abbreviated.

Home printout capability, physician/hospital/emergency room access to data.

RCN, remote care nurse; RT, remote technology; RTHHMI, Remote Technology for Home Health Monitoring Interview.

In general, participants were satisfied with the use of home telehealth and appreciated its utility in managing aspects of their health. Nurse oversight was a major facilitator in home self-monitoring as the feedback and encouragement served as reminders to send in their health measurements and aided in increasing awareness of and accountability for their health. As one participant put it:

I realize that doctors are not always going to be there and nurses are not going to be there, so it's my choice to do it. If I do it sneaky or don't be true about it, I'll be killing myself.

Another participant articulated feeling empowered and gaining a sense of control over her health through self-monitoring:

That's what it does, it empowers you to take control over your life because it's all happening to you…. I'm taking 15, 16 medications. It's very overwhelming. So that allows me to feel like I'm in control of the situation, because it's really scary. You don't know what's going on.

Still another participant expressed insight as to how his health impacted his spouse/caregiver:

Cause I tired see my wife do everything for me. I tired see her stressing out…I mean nobody likes to talk about it, but it's going to happen if I don't take my life serious. So that's my constant reminder everyday from everyone.

Technical issues were one of the major barriers participants encountered and accounted for 27.3% (9/33) of the reasons why participants stated they were unable to consistently send their health measurements. The most common technical issues that occurred were problems with the software used in the monitoring unit; these were resolved once updated monitoring units were installed. Only 1 participant (out of 33) experienced much difficulty mastering the technology and required frequent home visits to reinforce its usage. Other major barriers identified were difficulty remembering (7/33 [21.2%]) and feeling too sick, weak, or tired (7/33 [21.2%]).

RTHHMI: Structured Questions (Questions 14–22)

Table 3 shows the responses to Questions 14–22 of the RTHHMI. These questions were designed to quantify participants' satisfaction and perception of the utility of home-based telehealth monitoring for illness management. At least three-fourths of the participants reported that they would use RT to monitor some aspect of their health at home.

Table 3.

Likelihood of Using Remote Technology for Self-Monitoring

	VERY LIKELY/LIKELY		MAYBE/NOT LIKELY/NEVER
RTHHMI QUESTIONS 14–22 (N=30)^a	N	%	N	%
14. Using a computer with remote technology to monitor your health at home will help you manage your own health	28	93.3	2	6.7
15. Using a computer with remote technology to monitor your health at home will help you to control your weight	27	90.0	3	10.0
16. Using a computer with remote technology to monitor your health at home will help you to control your blood sugar ^{b c}	21	72.4	8	27.6
17. Using a computer with remote technology to monitor your health at home will help you to control your blood pressure	29	96.7	1	3.3
18. Using a computer with remote technology to monitor your health at home will help you to control your diet	23	76.7	7	23.3
19. Using a computer with remote technology to monitor your health at home can motivate you to take better care of your health	28	93.3	2	6.7
20. Using a computer with remote technology to monitor your health at home even without remote care nurse support	25	83.3	5	16.7
21. Recommend a friend who is on dialysis to use a computer with remote technology to monitor health at home	29	96.7	1	3.3
22. Continue to use after this study a computer with remote technology to monitor your health at home	27	90.0	3	10.0

Thirty-three interviews completed; 30 patients and 3 caregivers (who were not asked Questions 1–13).

As ordered by physician.

Missing data.

RTHHMI, Remote Technology for Home Health Monitoring Interview.

Discussion

The success of home telehealth relies heavily on patient adherence to a prescribed program. Responses from the structured surveys and semistructured interviews indicated a high level of satisfaction. Participants expressed that our model of home telehealth with RCN support promoted health behavioral change, which resulted in better outcomes, including the early identification of health concerns and the promotion of illness self-management skills. Home telehealth monitoring with RCN support instilled hope and improved quality of life; as one participant stated:

Before I felt pressured thinking, you know, when am I going to die? But since I have it, I can see it, it's really great knowing that I can live a little bit longer.

Sociodemographic and clinical characteristics did not negatively impact project participation or ability to master the technology or dampen enthusiasm toward home telehealth monitoring. It is notable that 15% of the study participants held immigrant status, one-third (33.33%) spoke English as a second language, and the majority (>75%) faced great economic challenges.

Current publications of home telehealth emphasize technology and outcomes when in reality it is a partnership between patients and their healthcare providers. Our study modified the paradigm by querying the patients' perspectives on home telehealth monitoring with RCN support using a mixed methods approach. Our findings give some insight into the dynamics of why patients change their health behaviors. Participants in our study expressed that other patient populations might also benefit from such a program as summarized by one participant:

You know all the people really need this kind of program…lot of them don't do things to measure their blood pressure, all that at home. Now you got something this good, you should give everybody who's sick, everybody on dialysis, chemotherapy, whatever else, terminal illness guys should have that monitor. That way they know themselves, how they can take care of themselves better during the day. Day by day by day.

Limitations of this study include a sample that, while ethnically diverse, was limited to high-risk patients with end-stage renal disease on hemodialysis, and their responses may be different in another population. In addition, there is the risk that participants provided responses they perceived as more desirable to their interviewers. Using technology less prone to errors may improve the RT experience.

Footnotes

Acknowledgments

This research was supported by the Department of Defense U.S. Army Medical Research and Materiel Command Telemedicine and Advanced Technology Research Center under award number W81XWH-07-2-0064. The U.S. Army Medical Research Acquisition Activity (Fort Detrick, MD) is the awarding and administering acquisition office. Other sources of support include the Hawaii Medical Service Association and the Queen's Medical Center, Honolulu, HI. The authors would like to express their gratitude to Nick Gibson, PhD student in Sociology and instructor at the University of Hawaii at Manoa, Honolulu, HI, for conducting interviews and for his unwavering commitment to this project. The authors would also like to pay special tribute to the participants in this study who graciously opened up their homes and lives to us and shared their insights and experiences without hesitation and with much enthusiasm.

Disclosure Statement

No competing financial interests exist.

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