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Clinical GerontologistPublication details, including instructions forauthors and subscription information:http://www.tandfonline.com/loi/wcli20
Telehospice Tools forCaregiversGeorge Demiris PhD a , Debra Parker Oliver MSW,PhD b , Karen L. Courtney PhD c & Michele Day MSW da University of Washington, Biobehavioral Nursingand Health Systems , Seattle, WA, USAb University of Missouri , Columbia, MO, USAc University of Pittsburgh , Pittsburg, PA, USAd School of Social Work, University of Missouri ,Columbia, USAPublished online: 17 Oct 2008.
To cite this article: George Demiris PhD , Debra Parker Oliver MSW, PhD , Karen L.Courtney PhD & Michele Day MSW (2007) Telehospice Tools for Caregivers, ClinicalGerontologist, 31:1, 43-57, DOI: 10.1300/J018v31n01_04
To link to this article: http://dx.doi.org/10.1300/J018v31n01_04
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Telehospice Tools for Caregivers:A Pilot Study
George Demiris, PhDDebra Parker Oliver, MSW, PhD
Karen L. Courtney, PhDMichele Day, MSW
ABSTRACT. This pilot study introduces videophones into the homes ofelderly caregivers of dying patients, evaluating their usefulness as a com-munication tool. A total of 12 senior caregivers from two hospice agencieswere recruited into the study. Portable videophones were installed allow-ing caregivers to conduct video-calls with hospice staff. Findings indicatethat the anxiety scores significantly decreased (p < 0.05) for participantsover time. Differences in quality-of-life scores (including individual di-mensions as well as overall score) were not statistically significant. Staffmembers at one of the participating hospice agencies were originally re-luctant to recruit caregivers to the study. Videophones were perceived as
George Demiris is Associate Professor, University of Washington, BiobehavioralNursing and Health Systems, Seattle, WA.
Debra Parker Oliver is affiliated with the University of Missouri, Columbia, MO.Karen L. Courtney is affiliated with the University of Pittsburgh, Pittsburg, PA.Michele Day is affiliated with the School of Social Work, University of Missouri,
Columbia.Address correspondence to: George Demiris, PhD, Associate Professor, University
of Washington, Biobehavioral Nursing and Health Systems, School of Nursing, Box357266, Seattle, WA 98195 (E-mail: [email protected]).
This project was funded, in part, by the John A. Hartford Foundation Social WorkFaculty Scholars Program, administered by the Gerontological Society of America, theUniversity of Missouri Research Board, and the National Library of Medicine Biomedicaland Health Informatics Research Training Grant T15-LM07089-14.
Clinical Gerontologist, Vol. 31(1) 2007Available online at http://cg.haworthpress.com
© 2007 by The Haworth Press, Inc. All rights reserved.doi:10.1300/J018v31n01_04 43
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easy to use by caregivers who overall saw benefit in the visual feedbackduring their communication with hospice staff. doi:10.1300/J018v31n01_04[Article copies available for a fee from The Haworth Document Delivery Service:1-800-HAWORTH. E-mail address: <[email protected]> Web-site: <http://www.HaworthPress.com> © 2007 by The Haworth Press, Inc. Allrights reserved.]
KEYWORDS. Telemedicine, hospice care, aged, videophone, telehos-pice, informatics, social work, anxiety, caregiver quality of life index
During the last century, clinical research has impacted life expectancyand the experiences of aging, illness and death. Advances in medical re-search and disease prevention initiatives have expanded life expectancyfrom 49 years in 1900 to 77.6 years in 2003 in the US (National Centerfor Health Statistics, 2005). As medical science prolongs life, it has alsoprolonged the dying process. In the last 10 years, the demand for hospicecare has grown rapidly. Hospice care was delivered to more than onemillion terminally ill Americans in 2004 (National Hospice and Pallia-tive Care Organization, 2004). Family members and friends who act asinformal caregivers are essential to the provision of palliative care ser-vices; however, this task is not without adverse effects on the care-givers themselves (Addington-Hall, Lay, Altmann, & McCarthy, 1998;Anderson, Linto, & Stewart-Wynne, 1995). The primary caregiver ofan elderly person will spend, on average, more than 6 hours each day as-sisting with personal hygiene, medication, household chores, shopping,and transportation (Pilisuk & Parks, 2001). The situation becomes evenmore critical for those caring for individuals with a terminal disease. Dy-ing intensifies the emotional demands of caring as patients experienceincreased functional decline (Teno, Weitzen, Fennell, & Mor, 2001).The National Hospice and Palliative Care Organization (2004) reportsthat nearly 65% of hospice recipients are over the age of 75.
Caregivers experience increased symptoms of depression, anxiety,loneliness, psychosomatic symptoms, restriction of roles and activities,strain in marital relationships and diminished physical health (Schulz,2000; Glueckauf & Ketterson, 2004; Barusch, 1988; Johnson, 1988;Northouse, 1988; Oberst, Thomas, Gass, & Ward, 1989; Sales, Toseland,Blanchard, & McCallion, 1995). Research on caregivers of personswith terminal illness have found significant levels of elevated depres-sive symptomatology among more than half the caregivers, a preva-lence rate three times that found in community samples of caregivers
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(Haley, LaMonde, Han, Narramore, & Schonwetter, 2001). These fam-ily caregivers are at especially high risk for psychological and physicalproblems.
Hospice agencies, on the other hand, cannot easily extend the frequen-cy or intensity of services they provide as they are faced with severalbarriers. Such barriers include difficulty in recruitment of essential healthprofessionals, insufficient reimbursement, and restrictive regulatory defi-nitions of service areas based on mileage and driving time (Virnig,Moscovice, Durham, & Casey, 2003). Telehealth, defined as the useof advanced telecommunication technologies aiming to bridge geo-graphic gaps and improve care delivery and education (Reid, 1996), is atool that has the potential to eliminate barriers to hospice care. Telecom-munication technologies include the Internet, monitoring devices, andvideoconferencing technologies. The concept of telehealth in hospicecare (telehospice) has been introduced and pilot-tested in different set-tings (Whitten, Doolittle, Mackert, & Rush, 2003).
An action research project in South Australia was designed to use in-teractive videoconferencing services to assist professionals with com-munication. This project found many benefits to the use of technologyin helping palliative care workers in rural and remote parts of Australiato communicate with one another more frequently even when separatedby large geographic distances (Elsey, 1996). A study in Japan assessedthe impact of a virtual reality (VR) technology to help alleviate stressfor terminal stage cancer patients who deal with “uneasiness, irritation,depression, and acceptance or despair” (Oyama, 1997). The system pre-sented movies, letters from friends, instructions, and information aboutcancer using a VR system. This project using a pre-post single groupdesign found that VR technology was useful in reducing patients’ stressexpressed by uneasiness and despair (Oyama, 1997).
In the United States, Doolittle (2000) conducted a preliminary analy-sis of potential cost reductions in using telehealth technology for end-of-life care. Hospice workers in two separate facilities, one in Michiganand the other in Kansas, were able to connect with and assess patientsthrough videophones located in their homes. Doolittle found that theaverage cost of traditional face-to-face assessment was approximately$130, whereas the average telehospice visit was $29. Although theseinitial studies suggested that telehospice may be a promising health caredelivery approach, the use of small sample sizes and of measurementtools without established psychometric properties reduced the overallvalidity of their results. Emphasis was also placed on the cost of a “vir-tual” visit in hospice and on health care attitudes, rather than on clinical
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outcomes. Furthermore, the majority of the preliminary studies evaluatedvideoconferencing as a substitute for actual in-person care rather thanan augmentation to traditional services.
The use of video-mediated communication in hospice can potentiallyenhance the caregiver experience (Demiris, Parker Oliver, Courtney, &Porock, 2005). Videophones provide an outlet for rich and meaningfulcommunication, increasing the sense of togetherness by allowing care-givers and their patients to “virtually” meet with the hospice staff. Thevideo component adds value to the communication as visual informa-tion supports different nonverbal aspects of remote interpersonal com-munication. Specifically, it supports the transmission of cognitive cuesthat are used to determine remote participants’ understanding (Clark &Brennan, 1991); turn-taking cues afforded by head turning, posture andeye gaze which support conversation management processes (Argyle,Lalljee, & Cook, 1968; Duncan, 1972 and most importantly social oraffective cues that reveal remote participants’ emotional state or inter-personal attitudes (Ekman & Friesman, 1975; Mehrabian, 1971; Reid,1977).
In preparation for this study, we explored the acceptance of tele-hospice concepts among hospice programs (Demiris, Parker Oliver,Fleming, & Edison, 2004); the readiness of programs to accept technol-ogy (Parker Oliver & Demiris, 2004); the usability of videophones withseniors and hospice professionals (Parker Oliver, Demiris, & Porock,2005); and the suitability of videophones for psychometric assessment(Demiris, Oliver, & Courtney, 2006). These preliminary studies indi-cated that videophones were easy to use for older adults, and that bothhospice staff and caregivers saw great potential in their utilization in ahospice setting. Specifically, hospice staff saw great potential in the useof videophones as a communication tool not only for nurses and socialworkers, but also for stakeholders who do not regularly communicatewith patients owing to time and travel constraints, such as the medicaldirector (Demiris, Parker Oliver, Fleming, & Edison, 2004). Similarly,the usability study with older adults showed that seniors found the tech-nology easy to use and were willing to accept the equipment in theirhomes, especially if requested by a healthcare provider (Parker Oliver,Demiris & Porock, 2005). Further usability test sessions with 52 volun-teer subjects using videophones revealed that the overall audio and im-age quality of the video-call was perceived as satisfactory by participantswho saw videophones as useful in the context of psychometric assess-ment (Demiris, Oliver, & Courtney, 2006).
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The purpose of this study was to test the usefulness of videophones asa communication tool in hospice, and gather data related to hospicecaregiver anxiety and quality of life preliminary to the development of afuture intervention study delivered using videophone technology. Spe-cifically, the study presented here is a pilot study that assessed the im-pact of videophone technology in facilitating communication amongfamily caregivers and hospice patients living in the home, and hos-pice outpatient staff. We also evaluated the effects of videophone useon changes in home-based family caregiver’s anxiety and quality oflife from their loved one’s initial entry into the hospice program totheir death. The underlying hypotheses are that videophones are a feasi-ble tool for service delivery and allow for the potential development ofan effective low-cost intervention tool that can decrease anxiety of care-givers, and improve their quality of life.
METHODS
Participants
A total of 12 caregivers and their patients were recruited (3 fromHospice A and 9 from Hospice B). Of the caregivers, 9 were female and3 were male. The average age of caregivers enrolled in the study was69.8 years. In terms of relationship to the patient, 6 caregivers (50%)were daughters or sons, 5 (42%) were patients’ spouses and 1 was otherfamily member (i.e., niece). A total of 11 patients had a diagnosis of can-cer and 1 of heart failure. Average length of stay in hospice (and in thestudy) for subjects was 48.2 days (SD 25.6). The study settings includedtwo hospice agencies, one in rural south-central Missouri (Hospice A)and one in an urban setting in Missouri (Hospice B). Both are hospi-tal-based, not-for-profit, licensed hospice program, Medicare/Medicaidcertified, and accredited by the Joint Commission on Accreditation forHealth Care Organizations. Hospice A reported 176 clients (91 maleand 85 female) for 2003 and Hospice B 464 clients (232 male and 232female) for that same year. The most frequent diagnoses for both agen-cies were cancer and heart failure and the majority of patients were overthe age of 65.
Eligibility criteria for inclusion of caregivers in the study included thedesignation of caregiver of a hospice patient, over the age of 55 years, novisual or severe hearing impairment and an available phone line at theresidence. Both caregiver and patient had to be mentally competent to
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provide consent for their participation in the study (as assessed by theadmissions nurse using agency protocols that included the Mini MentalState Examination). Hospice care was delivered on an outpatient basisin the homes of the family caregiver and dying patient.
Study Procedures
Within this study the videophone was not intended to “replace” anycomponent of traditional hospice visitation, but rather to be a tool forconversations that would otherwise take place over the telephone. Assuch, the videophone component was not meant to provide additionalservice, but rather to change the way in which staff and caregivers inter-act by adding a method for visual contact. The protocol required a re-search assistant (RA) to contact subjects every other week using thevideophone and collect measures related to the anxiety and quality oflife of caregivers. Hospice staff was also asked to contact the care-givers at least one time per week using the videophone to assess the hos-pice patient’s pain and symptoms. Caregivers, patients, and staff wereable to use the videophone/telephone throughout their enrollment inhospice to communicate problems and issues as they normally would.The videophones were POTS (plain old telephony service) and could beused in any home that had regular phone service.
Once subjects provided consent to participate in the study, a researchassistant installed a videophone into the home and instructed the care-giver on its use. The videophone model used was the Vizufon GVP-1000F POTS Color Videophone (C&S, Inc; Seoul, Korea) which wasportable, could be removed from the home, sanitized, and becomereadily available for the next caregiver and patient. Figure 1 depicts oneof the videophones used for this study. After installing the phone and in-structing the family, the RA administered instruments assessing anxietyand quality of life (described in Outcome Measures section) from pa-tients’ entry into hospice to their death. These assessments occurred ev-ery other week.
Outcome Measures
The State Trait Anxiety Inventory (STAI) was initially conceptual-ized as a research instrument for the study of anxiety in adults. It is aself-report assessment instrument which includes separate measures ofstate and trait anxiety. It reflects a “transitory emotional state or conditionof the human organism that is characterized by subjective, consciously
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perceived feelings of tension and apprehension, and heightened auto-nomic nervous system activity” (Spielberger, Gorsuch, & Lushene,1970, p. 25). This instrument has been used in hospice care (Heaven &Maguire, 1997). In this study the RA administered the questionnaire tothe caregiver every 2 weeks until the death of the patient. The instru-ment was modified slightly from its self-administration design to allowthe RA to administer the questions using an interview format. Beforethis decision we tested the instrument’s conversion from a self-admin-istered one to an interview format (Courtney, Demiris, & Parker Oliver,2005). Reliability was measured for test-retest stability, internal consis-tency, and stability between versions. Both paper and interview versionsperformed well in all three reliability measures (Courtney, Demiris, &Parker Oliver, 2005).
The Caregiver Quality of Life Index-Revised (CQLI-R) is a measureof caregivers’ quality of life based on a revision of the Caregiver Qual-ity of Life Index (CQLI) (Courtney, Demiris, Parker Oliver, & Porock,2005). The CQLI is a measure of caregivers’ quality of life. It includesfour dimensions: emotional, social, financial, and physical (McMillan &Mahon, 1994). This instrument has been used successfully with hospicecaregivers (Straton, 2003) and has been tested extensively for reliabilityand validity (Edwards & Ung, 2002). The CQLI-R is an interview instru-ment tested for reliability and validity in that format (Courtney, Demiris,
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FIGURE 1. A Model of the Videophone Used for the Study
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Parker Oliver, & Porock, 2005). CQLI reliability was measured for test-retest stability, internal consistency and stability between paper andinterview version and both versions performed well in all three reliabil-ity measures (Courtney, Demiris, Parker Oliver, & Porock, 2005). Themaximum score for each dimension is 10, with a total maximum scoreof 40. The instrument was administered by the RA every 2 weeks, untilthe death of the patient. The aim was to measure changes in pre- and post-intervention scores; given the range of duration of hospice episodes itwould be impossible to predict when to conduct the last assessment andas a result our biweekly administration allowed us to obtain the post-assessment as close to the patient’s death as possible. Since our focuswas on pre-post changes, additional assessments conducted between thebaseline and last assessment owing to the unpredictability of the hospiceepisode were disregarded in the calculations. Changes between pre- andpost-measurements were assessed using t-tests to detect significant dif-ferences.
Caregiver perceptions and technological feasibility were assessedusing observations, journal reporting by the research assistant, and se-lected caregiver interviews. The RA recorded observations, caregiverand family comments, staff comments, and technological concerns ina journal. An informal open-ended interview was conducted with thefirst four caregivers enrolled in the study following the removal of thevideophone from their home. Journal notes and interview transcriptswere reviewed and analyzed by team members to discern satisfactionand the feasibility of use. The content analysis was performed by threecoders who reviewed an initial set of journal and observation notes andtranscripts, and developed an initial coding scheme (that focused oncaregivers’ perceptions, namely perceived advantages, disadvantagesand concerns) and an accompanying coding manual. Each member ofthe coding team independently performed a content analysis of the re-maining transcripts using the same coding scheme. The coding tem-plates obtained independently by the coders were compared with assesscoders’ agreement, and discussed until consensus on themes and codingwas reached.
RESULTS
The purpose of this study was to test the usefulness of videophones asa communication tool in hospice, and to assess changes in family care-givers’ anxiety and quality of life. Table 1 shows the levels of STAI and
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CQLI-R at baseline (admission to the study) and at the last assessment.For one subject, only one assessment (that of the baseline) took place, asthe patient died before the following scheduled assessment 2 weeksafter the baseline. A further subject asked to withdraw from the studyafter 4 weeks, as the patient’s status worsened and the caregiver per-ceived the videophone as a distraction. For this subject the last assess-ment made was used for the analysis.
Findings indicated that the anxiety score significantly decreased (p <0.05) for participants after experiencing the intervention. Differencesin quality-of-life scores (including individual dimensions as well as over-all score) were not statistically significant. Journal notes and observationssupported the willingness of caregivers not only to participate in thestudy, but also the flexibility in problem-solving technical issues thatoccasionally arose. Caregivers had overall very positive perceptions ofthe videophone tool and saw benefit in the visual feedback during theircommunication with hospice staff. In one case, a caregiver inquiredabout purchasing a videophone for a geographically remote family mem-ber, whereas another caregiver developed a list with instructions andbutton combinations for features of the videophone that were beyond thescope of this study (e.g., address book, calendar). There were isolatedcases of technical problems (establishing a video connection, audioproblems); in these cases caregivers were patient and eager to prob-lem-solve. They appreciated the opportunity to be involved in researchand wanted to help improve the study. They freely offered suggestionsand looked forward to the virtual calls. The videophones were perceivedoverall as very user-friendly and reliable. As mentioned earlier, one care-giver withdrew from the study after 4 weeks as the condition of the pa-tient worsened and the videophone was perceived as a distraction.
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TABLE 1. Anxiety and Quality-of-Life Parameters Over Time
BaselineMean(SD)
(N = 12)
Rangein
BaselineScores
LastAssessmentMean (SD)
(N = 11)
Rangein Last
AssessmentScores
p-Value
STATE anxiety score 50.8 (1.99) 48-54 46.2 (2.38) 42-50 � 0.05CQLI-R
Emotional quality of life 4.50 (1.78) 0-7 5.08 (2.5) 1-9 � 0.206Social quality of life 5.67 (2.35) 3-10 6.17 (2.04) 4-9 � 0.111Financial quality of life 5.25 (2.34) 1-9 4.67 (2.39) 1-9 � 0.253Physical quality of life 4.50 (2.5) 0-8 3.83 (2.62) 1-9 � 0.305
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Staff members at Hospice A were originally reluctant to refer patientsand caregivers to the study owing to perceived increased workload whichslowed recruitment efforts. The RA attended the regular hospice inter-disciplinary team meetings and reported caregivers’ and patients’ satisfac-tion with the videophones. Staff members were pleased that the experiencewas a positive one for the study participants. However, throughout theduration of this study the hospice staff members’ participation was verylimited. The majority of the calls when initiated from the hospice agen-cies were initiated by the RA for the scheduled psychometric assess-ment rather than integrated as regular interactions into the actual careplan. Only in four occasions did hospice staff members initiate a video-call to communicate with the patients (one in Hospice A and 3 in Hos-pice B), whereas caregivers initiated the video-call 14 times.
DISCUSSION
Consistent with the experiences in other telehospice studies (Whitten,Doolittle & Mackert, 2005), staff members at Hospice A were reluctantto refer patients and caregivers to the study. The initial study procedurescalled for the hospice social worker to recruit caregivers and patientsto the study, instruct them on the use of the phone, install the technol-ogy, and conduct the psychometric assessment. Although Hospice A’sstaff members indicated support of the innovation and its protocol, theyseemed reluctant to refer caregivers into the study. Stating that theywere “very busy and overwhelmed,” staff became frustrated with hav-ing to install the videophones in the patients’ homes and reluctant to ad-minister the assessment instruments.
As a result, the original plan for staff recruitment and data collec-tion were changed and a Research Assistant (RA) serving both hospiceagencies was added to the project and given the responsibilities origi-nally outlined for staff (Parker Oliver, Demiris, Day, Courtney, &Porock, 2006). Staff members at Hospice B were more receptive to theuse of the telemedicine equipment and saw clear benefits in its use; thus,they were more wiling to refer patients and caregivers into the study.Research notes reflect that staff members across both hospices reportedthat caregivers in the study called less frequently after hours and enjoy-ed conducting scheduled video-calls.
Staff became more receptive as the RA modeled the use of the video-phone and they witnessed the interactions with patients and caregivers.On many occasions when the RA was using the videophone in the agency
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to conduct the psychometric assessment, other hospice staff memberswere interested in becoming part of the video-call and talking to the care-giver.
The findings of this pilot study indicate the potential of telehospiceinterventions targeting senior caregivers. Preliminary data show a sig-nificant decrease in anxiety levels over time. Although reductions incaregivers’ anxiety cannot be attributed directly to videophone commu-nication as a result of research design limitations, caregivers indicatedthat having clinical providers “see” their loved one increased their levelof security. Furthermore, they saw the videophone as an important addi-tional tool to assist them in coping with caregiving challenges.
The quality of life seems to remain relatively stable between admis-sion and the last assessment which is consistent with previous hospicefindings (McMillan, 1996; McMillan & Mahon, 1994). The study alsoallowed us to discover issues with staff members. Research is not in-tegrated routinely into hospice practice and the staff members of theparticipating agencies were not familiar with the process of a researchstudy. Furthermore, it became clear that staff members not only neededtraining on the operation of the videophone but also when to use it andhow to document its usage. A telehealth innovation requires not only atechnical understanding of the videophone technology but also a visionof its implementation and potential.
As is the case for most pilot studies, caution should be exercised ininterpreting the results. Besides the obvious small sample, the main lim-itation of this study is the lack of a control group that would allow a com-parison to caregivers and patients receiving traditional standard hospicecare services (without a videophone). Similarly much of palliative careresearch, obtaining adequate sample sizes is a major challenge, espe-cially for those involving innovative technology (Hopkinson, Wright, &Corner, 2005). The next steps for this research agenda are to develop astandardized intervention which can be delivered using the videophone,and design a clinical randomized trial including caregivers randomlyassigned to a control group (receiving standard services) and an experi-mental group (which would be receiving the services provided for theintervention group in this study). In this context, the role of potential con-founding factors such as disease and prognosis, caregiver and patientgender and other demographic data, can be examined.
In the context of hospice, the evaluation of tools and interventionstargeting caregivers introduces the challenge of selecting the appropriateoutcome measures. In addition to quality of life and anxiety that werethe focus of this pilot study, further factors can be explored as parameters
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related to or affected by enhanced communication. Specifically, addi-tional parameters may be appropriate that highlight the coping experi-ence. As Folkman (1997, p. 564) has pointed out:
Coping may have a relatively small influence on adjustment andrecovery compared to factors such as the timing and nature of thedeath, history and personality. Nonetheless, as the extensive clini-cal literature indicates, coping is important because it is one of thefew factors influencing bereavement outcomes amenable to briefinterventions.
Antonovsky’s (1987) theory of sense of coherence (SOC) providessuch a model for describing caregivers’ coping with death and bereave-ment. The SOC considers one’s ability to respond to stressors by the ap-propriate use of an effective coping strategy. One dimension of SOC ismanageability which incorporates both the concept of availability of re-sources and the belief that those resources can be tapped. It is this di-mension that the presence and usage of videophones as communicationenhancement tools may affect. Our next steps will include SOC as anadditional outcome measure in the context of telehospice.
Technology-based interventions for elders that enhance care ser-vices need to target a wide audience including ethnically and cultur-ally diverse elders. This may be a challenge in the hospice setting giventhat hospice services are for a variety of reasons underutilized by ethnicminorities (Gordon, 1996). Challenges can be addressed by both the re-cruitment strategy (e.g., over-sampling, outreach activities to rural andunderserved areas) and the actual system design. As the report by theOffice of Disease Prevention and Health Promotion (Baur & Kanaan,2006) points out, the success of tailoring information technology-basedsystems for diverse end users highlights “the need for much greater at-tention to the design and testing of elements that make tools a better fitin terms of cultural relevance, consistency, comprehensiveness, and un-derstandability” (Baur & Kanaan, 2006).
This pilot study demonstrates that the use of videophones in hospicecare is feasible and promising as a tool that can enhance communica-tion. The study is in agreement with Collins, Bhatti, Dexter, and Rabbitt(1992) who countered the notion that senior citizens are inclined to re-ject new technologies, as he stated in reporting on a survey of 2,500 olderpeople, the lack of any evidence for a positive relationship between ageand technophobia. This pilot study lays the groundwork for clinical tri-als that will investigate the clinical outcomes resulting from interven-tions using telehospice technologies.
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REFERENCES
Addington-Hall, J., Lay, M., Altmann, D., & McCarthy, M. (1998). Community carefor stroke patients in the last year of life: Results of a national retrospective surveyof surviving family, friends and officials. Health & Social Care in the Community,6(2), 112-119.
Anderson, C. S., Linto, J., & Stewart-Wynne, E. G. (1995). A population-based assess-ment of the impact and burden of caregiving for long-term stroke survivors. Stroke,26(5), 843-849.
Antonovsky, A. (1987). Unraveling the Mystery of Health: How People Manage Stressand Stay Well. San Francisco, CA: Jossey-Bass Publishers.
Argyle, M., Lalljee, M., & Cook, M. (1968). The effects of visibility on interaction inthe dyad. Human Relations, 28, 289-304.
Armer, J. M. (2003). A case study of the use of telemedicine by advanced practicenurses in rural Missouri. Journal of Continuing Education in Nursing, 34(5),226-233.
Barusch, A. S. (1988). Problems and coping strategies of elderly spouse caregivers.Gerontologist, 28(5), 677-685.
Bashshur, R. (1995). On the definition and evaluation of telemedicine. TelemedicineJournal, 1(1), 19-30.
Baur, C. & Kanaan, S. B. (2006). Expanding the Reach and Impact of Consumere-health tools. A report by the U.S. Department of Health and Human Services; TheOffice of Disease Prevention and Health Promotion (ODPHP).
Clark, H. & Brennan, S. (1991). Grounding in communication. In Resnick, L. B., Levine,J., & Teasley, S. (Eds.), Perspectives on socially shared cognition (pp. 127-149).Washington, DC, APA Press.
Clark, H. & Schaefer, E. (1989). Contributing to discourse. Cognitive Science, 13,259-292.
Collins, S. C., Bhatti, J. Z., Dexter, S. L., & Rabbitt, P. M. (1992). Elderly people in anew world: Attitudes to advanced communications technologies. In Baima, H. &Graafmans, J. A. M. (Eds.), Gerontechnology (pp. 277-282) (Amstersam; IOS Press).
Courtney, K. L., Demiris, G., & Parker Oliver, D. (2005). Handheld computer datacollection in the Missouri Telehospice Project. Paper presented at the National Li-brary of Medicine Fellowship Directors Meeting 2005, Bethesda, MD.
Courtney, K. L., Demiris, G., Parker Oliver, D., & Porock, D. (2005). Conversion ofthe CQLI to an interview instrument–Research in brief. European Journal of Can-cer Care, 14(5), 463-464.
Demiris, G., Oliver, D. R. & Courtney, K. (2006). A study of the suitability ofvideophones for psychometric assessment. Behaviour and Information Technol-ogy, 25(3), 233-237.
Demiris, G., Parker Oliver, D. R., Courtney, K. L., & Porock, D. (2005). Use of tech-nology as a support mechanism for caregivers of hospice patients. Journal of Pal-liative Care, 21(4), 303-309.
Demiris, G., Parker-Oliver, D., Fleming, D., & Edison, K. (2004). Hospice attitudestoward “Tele-hospice.” American Journal of Hospice & Palliative Care, 21(5),343-347.
Demiris et al. 55
Dow
nloa
ded
by [
Col
umbi
a U
nive
rsity
] at
02:
14 0
5 O
ctob
er 2
014
Doolittle, G. C. (2000). A cost measurement study for a home-based telehospice ser-vice. Journal of Telemedicine & Telecare, 6(Suppl 1), S193-S195.
Duncan, S. (1972). Some signals and rules for taking speaker turns in conversation.Journal of Personal and Social Psychology, 23, 283-292.
Edwards, B. & Ung, L. (2002). Quality of life instruments for caregivers of patientswith cancer. Cancer Nursing, 25(5), 342-349.
Ekman, P. & Friesen, W. (1975). Unmasking the face. Upper Saddle River, NJ:Prentice Hall.
Elsey, B. & McIntyre, J. (1996). Assessing a support and learning network for pallia-tive care workers in a country area of South Australia. Australian Journal of RuralHealth, 4(3), 159-164.
Folkman, S. (1997). Positive psychological states and coping with severe stress. SocialScience & Medicine, 45, 1207-1221.
Gordon, A. K. (1996). Hospice and minorities: A national study of organizational ac-cess and practice. The Hospice Journal, 11(1), 49-70.
Glueckauf, R. L. & Ketterson, T. U. (2004). Telehealth interventions for individualswith chronic illness: Research review and implications for practice. ProfessionalPsychology: Research and Practice, 35, 615-627.
Haley, W. E., LaMonde, L. A., Han, B., Narramore, S., & Schonwetter, R. (2001).Family caregiving in hospice: Effects on psychological and health functioningamong spousal caregivers of hospice patients with lung cancer or dementia. Hos-pice Journal, 15(4), 1-18.
Heaven, C. M. & Maguire, P. (1997). Disclosure of concerns by hospice patients andtheir identification by nurses. Palliative Medicine, 11(4), 283-290.
Hopkinson, J. B., Wright, D. N., & Corner, J. L. (2005). Seeking new methodology forpalliative care research: Challenging assumptions about studying people who areapproaching the end of life. Palliative Medicine, 19(7), 532-537.
Johnson, J. (1988). Cancer: A family disruption. Recent Results in Cancer Research,108, 306-310.
McMillan, S. C. (1996). Quality of life of primary caregivers of hospice patients withcancer. Cancer Practice, 4(4), 191-198.
McMillan, S. C. & Mahon, M. (1994). The impact of hospice services on the quality oflife of primary caregivers. Oncology Nursing Forum, 21(7), 1189-1195.
Mehrabian, A. (1971). Silent messages. Belmont, NJ: Wadsworth Press.National Center for Health Statistics. (2005). Deaths: Preliminary Data for 2003. Na-
tional Vital Statistics Report (NVSR), 53(15).National Hospice and Palliative Care Organization. (2004). NHPCO Facts and Figures.
Retrieved April 13, 2006 from http://www.nhpco.org/files/public/Facts_Figures_for2004data.pdf
Northouse, L. L. (1988). Social support in patients’ and husbands’ adjustment to breastcancer. Nursing Research, 37(2), 91-95.
Oberst, M. T., Thomas, S. E., Gass, K. A., & Ward, S. E. (1989). Caregiving demandsand appraisal of stress among family caregivers. Cancer Nursing, 12(4), 209-215.
Oyama, H. (1997). Virtual reality for the palliative care of cancer. Studies in HealthTechnology and Informatics, 44, 87-94.
56 CLINICAL GERONTOLOGIST
Dow
nloa
ded
by [
Col
umbi
a U
nive
rsity
] at
02:
14 0
5 O
ctob
er 2
014
Parker-Oliver, D. & Demiris, G. (2004). An assessment of the readiness of hospiceorganizations to accept technological innovation. Journal of Telemedicine & Tele-care, 10, 170-174.
Parker Oliver, D., Demiris, G., Day, M., Courtney, K., & Porock, D. (2006). Tele-hospice support for elder caregivers of hospice patients: Two case studies. Journalof Palliative Medicine, 9(2), 264-267.
Parker Oliver, D., Demiris, G., & Porock, D. (2005). The usability of videophones forseniors and hospice providers: A brief report of two studies. Computers in Biologyand Medicine, 35(9), 782-790.
Pilisuk, M. & Parks, S. H. (2001). Caregiving: Where families need help. Social Work,33(5), 436-440.
Reid, J. (1996). A Telemedicine Primer: Understanding the Issues. Billings: InnovativeMedical Communications.
Sales, E. (1991). Psychosocial impact of the phase of cancer on the family: An updatedreview. Journal of Psychosocial Oncology, 9(4), 1-18.
Schulz, R. (Ed.). (2000). Handbook of dementia caregiving: Evidence-based interven-tions for family caregivers. New York: Springer.
Spielberger, C. D., Gorsuch, R. L., & Lushene, R. E. (1970). Manual for the State-TraitAnxiety Inventory (Self Evaluation Questionaire). Palo Alto, CA: Consulting Psy-chologist Press.
Straton, J. (2003). Quality of life and emotional distress of elderly caregivers of termi-nally ill patients enrolling in hospice. The Gerontologist, 43(Special Issue 1), 235.
Teno, J. M., Weitzen, S., Fennell, M., & Mor, V. (2001). Dying trajectory in the lastyear of life: Does cancer trajectory fit other diseases? Journal of Palliative Medi-cine, 4(4), 457-464.
Toseland, R. W., Blanchard, C. G., & McCallion, P. (1995). A problem solving interven-tion for caregivers of cancer patients. Social Science & Medicine, 40(4), 517-528.
Virnig, B. A., Moscovice, I., Durham, S., & Casey, M. (2003). Do rural elders havelimited access to medicare hospice services? Research Brief, 10(4), Retrieved April 13,2006 from http://www.hsr.umn.edu/res_pubs/files/research_briefs/03/RB_09_03.htm
Whitten, P., Doolittle, G. & Mackert, M. (2005). Providers’ acceptance of telehospice.Journal of Palliative Medice, 8(4), 730-735
Whitten, P. S., Doolittle, G. C., Mackert, M., & Rush, T. (2003). Telehospice: End-of-life care over the lines. Nursing Management, 34(11), 36-39.
RECEIVED: 01/15/06REVISED: 11/30/06
ACCEPTED 01/10/07
doi:10.1300/J018v31n01_04
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