ArticlePDF AvailableLiterature Review

A Systematic Review of Telehealth in Palliative Care: Caregiver Outcomes

September 2015
Telemedicine and e-Health 22(4)

DOI:10.1089/tmj.2015.0090

Authors:

Yongqiang Zheng

George Fox University

Barbara Anderson Head

University of Louisville

Tara Schapmire

University of Louisville

Objective: Telehealth interventions have proven efficacy in healthcare, but little is known about the results of such interventions in palliative care. We conducted a systematic review to evaluate caregiver outcomes related to palliative telehealth interventions. Materials and Methods: We searched multiple databases for articles published between January 2003 and January 2015 related to telehealth in palliative care. Two hundred twenty-one articles were considered; nine of these met study inclusion criteria. Data on study design, population, interventions, methods, outcomes, conclusions, and methodological quality were extracted and evaluated by three investigators. Results: Of the nine studies, five measured caregiver quality of life, three measured caregiver anxiety, and two measured caregiver burden. All the studies measuring caregiver quality of life showed no significant difference after telehealth interventions. The caregiver anxiety score decreased after the intervention in two studies, and one study reported significantly reduced caregiver burden. Although feasibility of or caregiver satisfaction with the telehealth intervention was not the focus of this review, most studies reported such findings. Of the nine studies, the majority were rated as having moderate quality using the Cochrane Collaboration’s tool for assessing risk of bias. Conclusions: This systematic review suggests there is evidence of overall satisfaction in caregivers who undergo a telehealth intervention, but outcomes reported were often not substantial. Methodological flaws and small sample sizes negatively affected study quality. More rigorous research to test and evaluate such palliative interventions is needed.

Flowchart of literature search procedure for eligible studies.

…

. Systematic Review Data Extraction Form

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Original Research

A Systematic Review of Telehealth in Palliative Care: Caregiver Outcomes

Yongqiang Zheng, MA, MSSW,

Barbara A. Head, PhD, CHPN, ACSW, FPCN,

and Tara J. Schapmire, PhD, MSSW, CSW, CCM, OSW-C

Kent School of Social Work and

School of Medicine,

University of Louisville, Louisville, Kentucky.

Abstract

Objective: Telehealth interventions have proven efficacy in

healthcare, but little is known about the results of such

interventions in palliative care. We conducted a systematic

review to evaluate caregiver outcomes related to palliative

telehealth interventions. Materials and Methods: We

searched multiple databases for articles published between

January 2003 and January 2015 related to telehealth in

palliative care. Two hundred twenty-one

AU1 articles were

considered; nine of these met study inclusion criteria. Data

on study design, population, interventions, methods, out-

comes, conclusions, and methodological quality were ex-

tracted and evaluated by three investigators. Results: Of the

nine studies, five measured caregiver quality of life, three

measured caregiver anxiety, and two measured caregiver

burden. All the studies measuring caregiver quality of

life showed no significant difference after telehealth inter-

ventions. The caregiver anxiety score decreased after the

intervention in two studies, and one study reported signif-

icantly reduced caregiver burden. Although feasibility of or

caregiver satisfaction with the telehealth intervention was

not the focus of this review, most studies reported such

findings. Of the nine studies, the majority were rated as

having moderate quality using the Cochrane Collaboration’s

tool for assessing risk of bias. Conclusions: This systematic

review suggests there is evidence of overall satisfaction in

caregivers who undergo a telehealth intervention, but out-

comes reported were often not substantial. Methodological

flaws and small sample sizes negatively affected study

quality. More rigorous research to test and evaluate such

palliative interventions is needed.

Key words: telehealth, palliative care, hospice care, caregiver,

intervention

Introduction

Telehealth interventions have become widely accepted

as a means for assessment, education, and disease

management in healthcare systems around the world.

Such interventions overcome geographical chal-

lenges while providing convenient, immediate responses to

patients and caregivers. Much has been published related to

the value of telehealth interventions, and new journals have

emerged devoted totally to telehealth and telemedicine.

However, there are few studies evaluating palliative telehealth

interventions for palliative care patients or their caregivers.

The vast majority of telehealth interventions have been

directed toward chronic diseases such as diabetes,

1,2

heart

failure,

3,4

and chronic obstructive pulmonary disease,

and

the telehealth strategy is most often focused on preventing,

managing, or improving the condition. Although one might

argue that managing a chronic condition is palliative care,

palliation has not been the stated goal in most telehealth in-

terventions. Therefore, little is known about the value of tel-

ehealth that is directed toward the provision of palliative care.

When the patient is seriously ill or dying, the caregiver

assumes the responsibility for managing care, receiving in-

formation, and communicating with professional clinicians

and support staff.

6,7

Because the family caregiver is central to

the patient’s care and assumes major responsibility for the

day-to-day management, it is recommended that supportive

interventions be directed toward the caregiver when palliative

care is the focus.

In order to develop a comprehensive perspective on the

impact of palliative telehealth interventions on caregivers, we

conducted a systematic review of the literature.

Materials and Methods

SEARCH STRATEGY

The literature search was performed using the following

electronic databases: Academic Search Premier, Ageline, CINAHL,

Medline, Psychology and Behavioral Science Collection, Psych

INFO, Sociological Collection, and TOPIC Search. Search terms

used were telehealth and palliative care, telehealth and ad-

vanced cancer, telehealth and hospice, and telehealth and

chronic illness. AU2

The term telemedicine was intentionally

not used as this generally refers to telehealth education and

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communication among healthcare providers; however, tele-

health and telemedicine are used by some interchangeably,

and 32 telemedicine articles were included in the search

results.

INCLUSION CRITERIA

To be included in this review, an article had to meet the

following criteria:

1. The intervention was focused on patients receiving

palliative or end-of-life care for a serious condition (i.e.,

advanced disease, end-stage disease).

2. The study reported caregiver outcomes using either

qualitative or quantitative measures.

3. The study was published in English between January

2003 and January 2015.

Reports that described an intervention or evaluated the

feasibility of an intervention but did not report caregiver

outcomes were excluded, as were single case studies. Studies

focused on chronic conditions not considered to be advanced

or end stage without a stated purpose of providing palliative

or end-of-life care were also excluded.

STUDY QUALITY EVALUATION

The Cochrane Collaboration’s tool for assessing risk of bias

in randomized trials was used to evaluate study rigor and

quality. This tool evaluates study performance on six domains

of bias: selection bias, performance bias, detection bias, at-

trition bias, reporting bias, and other bias.

Developed by the

Cochrane Collaboration’s methods groups in 2005, this tool

is used to identify flaws in design, conduct, analysis, and

reporting that can cause the effect of an intervention to be

underestimated or overestimated.

All three authors reviewed each article to be included and

participated in extracting descriptive information for

T1 Table 1.

Each also evaluated risk of bias independently. The authors

then consulted to develop consensus regarding Table 1 and

study quality evaluation. The PRISMA Statement for reporting

systematic reviews

was used to structure our analysis.

Results

STUDY INCLUSION

One hundred eighty-six articles were identified using the

search criteria described above. Another 35 were identified

through supplemental searches, including review of refer-

ences cited in each relevant article. Of the 221 considered

articles, 212 were excluded for various reasons (

F1 Fig. 1).

Twenty-four articles and several of the systematic reviews

included in the search results were directed toward chronic

disease management without a documented focus on ad-

vanced disease, palliative care, or end of life and were ex-

cluded from the final results. Fifty-six of the articles described

interventions but did not report outcomes. Table 1 displays the

nine studies included and describes the design, population,

intervention, outcome measurement, significant results of

each, and study quality rating.

STUDY QUALITY/RIGOR

Using the Cochrane Collaboration’s tool for assessing risk of

bias, the nine studies were categorized into three quality/rigor

levels: high, moderate, and low, with low risk of bias indicating

high quality/rigor ( F2

Fig. 2). A study was considered high quality/

rigor when it met at least five AU3

of the seven criteria for low risk of

bias (>75%), a study was determined as moderate quality/rigor

if it met between one and four of the seven criteria for low risk

of bias (25–75%), and a study was determined to be a low

quality/rigor study if it met none of the seven criteria for low

risk of bias (<25%). Of the nine studies, the majority (77.8%)

scored as moderate. Only two of the nine studies reported a

randomized process of participant recruitment and allocation,

and none reported using a process of blinding participants.

However, all of them described the completeness of their out-

come data reporting for main outcome measures.

PATIENT CHARACTERISTICS

Of the nine studies, four recruited patients from local hos-

pice programs,

11–14

whereas two recruited from palliative care

programs.

15,16

Patients in one study were from a pediatric

palliative care program.

One study recruited patients with

heart failure from cardiac care programs,

and one recruited

patients from cancer centers.

CAREGIVER CHARACTERISTICS

The caregiver samples ranged from 8

to 217

participants.

All of the participants were adult caregivers over 18 years of

age. Caregivers’ relationships to the patient included spouses/

partners, parents, children, and others (siblings, grandchildren,

daughters-in-law) to the patients, although three studies did

not report the type of relationship.

12,13,15

The caregivers were

from various locations, including both urban and rural areas.

Five studies took place in the United States,

11–14,19

two in

Australia,

15,17

one in Taiwan,

and one in Canada.

MEASUREMENTS AND DATA COLLECTION METHODS

Of the nine studies, five measured the caregiver quality of life

using various scales, including Caregiver Quality of Life Index-

Revised,

11–13

Quality of Life in Life Threatening Illness-Family

instrument,

and the Medical Outcome 36-Item Short-Form

ZHENG ET AL.

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Table 1. Systematic Review Data Extraction Form

REFERENCE

(YEAR) STUDY DESIGN POPULATION INTERVENTION

OUTCOME:

MEASUREMENT

SIGNIFICANT RESULTS/

CONCLUSIONS

STUDY

QUALITY

Bradford et al.

(2012)

Prospective exploratory cohort

study; control or intervention

group assignment based on

primary caregiver preference

or access to Internet

14 primary caregivers of children

(0-18 years old) diagnosed with a

life-limiting condition, recruited

from a pediatric palliative care

program in Brisbane, Australia

Intervention group received usual care

supplemented with home

telehealth consultations; control group

received usual care.

Caregiver QOL: 16-item QOLLTI-F High attrition due to patient death. No difference

in QOLLTI-F between intervention and control.

Caregivers equally satisfied regardless of home

telehealth program participation.

Moderate

Oliver et al.

(2010)

Sequential mixed method

two-phase design (Phase 1

serving as historical

comparison for Phase 2), using

repeated measures

75 caregivers, (predominantly

female, white) caring for hospice

patients from two rural hospice

programs in the Midwest of the

United States

Phase 1 participants received

traditional hospice care.

Videophones were used to connect the

Phase 2 caregivers with the interdisci-

plinary team meeting,

allowing them to have a visual image

of the team as well as

two-way conversation.

Perception of pain

management: CPMQ

Caregiver QOL: CQLI-R

Anxiety: CAI

Hospice patient QOL: HQLI

Primary: CPMQ/HQLI

Secondary: CAI/CQLI-R

The CPMQ subscale scores of

‘‘tolerance’’ and ‘‘stoicisim’’ showed significant

association with the phase of the study. No

significant differences were found between

baseline and last follow-up on HQLI, CPMQ total

scores, or CQLI-R. Intervention was seen as a

promising way to improve hospice care,

especially pain management. HQLI proved

impractical for study use. Videophone technology

was a feasible way to overcome traditional

barriers preventing caregivers’ participation in

meetings.

Moderate

Chiang et al.

(2012)

Two-group nonrandomized

pretest–posttest design. The

intervention group had to be

able to pay for telehealth

equipment and support.

30 patients with advanced heart

failure and their primary

caregivers, recruited from several

medical institutions in Taiwan

Experimental group subjects were

trained by the telenursing specialist to

measure patients’ physiological pa-

rameters at home and to upload the

data to the telehealth center via the

telehealth device. Caregivers also re-

ceived 24-h telehealth support. The

comparison group caregivers received

traditional instruction.

Caregiver burden: Chinese

version of CBI

Caregiver stress: MSS

Family functioning:

Chinese version of FFFS

The intervention group experienced significantly

reduced family caregiver burden, improved

mastery of stress, and improved family function.

Telehealth care can improve caregiver outcomes.

Moderate

Chih et al.

(2012)

Pooled analysis of two

randomized trials

217 advanced-stage lung, breast,

and prostate cancer patients and

their adult caregivers were

recruited at five outpatient

oncology clinics in the United

States.

Caregivers received access to CHESS. A

second group (n=110) had access the

CHESS plus CR, an online symptom-

reporting system,

notifying clinicians of symptom

distress. Clinicians received e-mail

alerts when symptom distress above a

predetermined threshold was

reported.

Caregiver preparedness:

4-item Caregiver Preparedness

Scale, a subscale of the Family

Care Inventory

Caregiver physical burden:

4-item Caregiver Physical Burden

Scale, a subscale from the CBI

Caregiver negative mood: subset

of negative mood items from

SV-POMS

Caregivers in the CHESS +CR group reported less

negative mood than those in the CHESS-only

group. Groups were not significantly different on

caregiver preparedness and physical burden at

either time point. Caregivers may experience less

emotional distress due to timely communication

of caregiving needs.

Moderate

Phillips et al.

(2008)

Mixed-methods analysis of

multiple data sources. No

comparison group

8 caregivers from a rural pallia-

tive care program in Australia

An AHTSS was provided by generalist

nurses.

Data sources included key

informant consultations, review

of case notes, interviews with

stakeholders, meeting minutes,

quality assurance activities, and

audits of call sheets.

The average duration of the call was 12.35 min.

The AHTSS is an efficient and effective strategy in

alleviating distress of underserved rural

caregivers and is highly valued by caregivers.

Low

continued /

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Table 1. Systematic Review Data Extraction Form continued

REFERENCE

(YEAR) STUDY DESIGN POPULATION INTERVENTION

OUTCOME:

MEASUREMENT

SIGNIFICANT RESULTS/

CONCLUSIONS

STUDY

QUALITY

Demiris et al.

(2007)

Pilot study. Feasibility testing.

Pre-/postintervention survey

design, with noncomparison

group

12 caregivers recruited from two

outpatient hospice programs:

one in a rural area and one in an

urban area of Missouri; 9 females

and 3 males

A videophone was installed at each

patient’s home to communicate

caregivers’ issues and problems.

Anxiety: STAI

QOL: CQLI-R

Caregiver perceptions were

assessed through research

assistants’ observation journal,

caregiver comments, and

informal interviews with selected

caregivers.

STAI score significantly decreased after the

intervention. Differences in QOL were not

statistically significant. Caregivers had an overall

positive perception of the videophone tool, found

it easy to use, and saw benefit in the visual

communication with hospice staff.

Moderate

Stern

(2008) Mixed-method case study;

utilization data and qualitative

analysis of interviews,

observations, and nursing

documentation

12 caregivers for palliative cancer

patients in Canada

Specialist nurses available 24 h/day

who communicated with patients and

families using videophones

Utilization patterns

(quantitative); thematic analysis

of qualitative data.

Mean length of exposure to telehealth was 3.5

months. Remote monitoring was used in 9% of

all contacts; 4% of all contacts required a visit by

the telenurse. Thematic analysis revealed three

subthemes: ease of access to a healthcare

professional; reassurance with visual access to

care; and enhanced access to pain symptom

management. Caregivers reported high levels of

satisfaction with the intervention, finding the

technology easy to use.

Moderate

Demiris et al.

(2012)

Randomized noninferiority

trial with two groups

126 caregivers, recruited from

two hospice programs in the

United States: 77 were randomly

assigned to the group receiving

face-to-face PST and 49 to the

group receiving PST via

videophone.

A videophone that operates over

regular telephone lines was installed at

patients’ homes. In total, three

intervention video calls were made,

each one lasting approximately 45 min.

QOL: CQLI-R

Anxiety: STAI,

Problem-Solving Inventory

The anxiety score decreased

significantly after the intervention. Differences in

QOL were not significant. PST delivered via

videophone was not inferior to face-to-face

delivery. The observed changes in scores were

similar for each group. Under both conditions,

caregiver QOL improved, and state anxiety

decreased.

High

Kilbourn et al.

(2011)

A single-group feasibility

study

23 caregivers recruited from

seven participating hospice

programs in the United States

A telephone cognitive-behavioral

stress-management intervention

including 10–12 weekly telephone

counseling calls

Depression: CES-D

Stress: PSS

QOL: MOS SF-36

Social support: ESSI, BFS

Depression and perceived stress decreased. Social

support and benefit finding increased. The

intervention was feasible for informal hospice

caregivers. Caregivers reported high levels of

satisfaction. They also reported high levels of

self-efficacy regarding their ability to implement

the adaptive coping skills. There was a decrease in

physical QOL across the three measurements.

Moderate

AHTSS, after-hours telephone support service; BFS, Benefit Finding Scale; CAI, Communication Anxiety Inventory; CBI, Caregiver Burden Inventory; CES-D, Center for Epidemiological Studies Depression Scale; CHESS,

Comprehensive Health Enhancement Support; CPMQ, Caregiver Perception of Pain Medicine Questionnaire; CQLI-R, Caregiver Quality of Life Index-Revised; CR, Clinician Report; ESSI, ENRICHD Social Support Instrument;

FFFS, Feetham Family Functioning Survey; HQLI, Hospice Quality of Life Index; MOS SF-36, Medical Outcome 36-Item Short-Form Health Survey; MSS, Mastery of Stress Scale; PSS, Perceived Stress Scale; PST, problem-

solving therapy; QOL, quality of life; QOLLTI-F, Quality of Life in Life Threatening Illness-Family instrument; STAI, State-Trait Anxiety Inventory; SV-POMS, Shortened Version of the Profiles of the Mood Status.

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4 TELEMEDICINE and e-HEALTH APRIL 2016 ªMARY ANN LIEBERT, INC.

Health Survey.

Three measured caregiver anxiety: two of

them using the State-Trait Anxiety Inventory and one

using Communication Anxiety Inventory. Two measured

caregiver burden using the Caregiver Burden Inventory,

one used the Chinese translated version Caregiver Burden

Inventory, and one used only a subscale of the Caregiver

Burden Inventory. Other instruments used in the nine

studies included the Caregiver Perception of Pain Medicine

Questionnaire, Mastery of Stress Scale, the Feetham

Family Functioning Survey, the Shortened Version of the

Profiles of the Mood Status, the Center for Epidemiological

Studies Depression Scale, the Perceived Stress Scale, the

ENRICHD Social Support Instrument, and the Benefit

Finding Scale.

Seven out of the nine studies used quantitative mea-

sures and analysis. The other two studies

15,16

used pre-

dominately qualitative methods (interviews and analysis

of documentation) coupled with utilization data.

TELEHEALTH TECHNOLOGY

Of the nine studies, four used videophones to sim-

ulate face-to-face communication with medical pro-

fessionals.

11–13,16

Two used regular phones for the

purpose of counseling.

14,15

Two used Internet-based

interventions.

18,19

One study did not report the details

of the telehealth device used in the intervention.

FINDINGS

Telehealth and caregiver quality of life. All five of the

studies measuring caregiver quality of life

11–13,17

showed no significant difference between the experi-

mental and control groups (or between pretest and

posttest). Caregivers in the single-group feasibility study

showed decreased physical quality of life over time.

Telehealth and caregiver anxiety. The anxiety score

significantly decreased after the intervention in two

studies.

12,13

One study did not show significant im-

provement in caregiver anxiety.

Telehealth and caregiver burden. Of the two studies

testing caregiver burden, one reported that the inter-

vention group experienced significantly reduced care-

giver burden,

and the other showed no significant

difference on the caregiver burden measurement.

Other measured outcomes. Besides the findings listed

above, there were other outcome measures used in the

nine studies. One study

found that the intervention

group experienced significantly improved family functioning

by reporting patients’ physical data through the telehealth

device and accessing 24-h telehealth support. Chih et al.

found an online symptom reporting system helped caregivers

to reduce negative mood. Kilbourn et al.

found caregivers

who received the telehealth intervention showed decreased

depression and perceived stress and increased social support

and benefit finding over time. Another study

found no sig-

nificant difference in anxiety between baseline and follow-up.

FEASIBILITY/SATISFACTION

Although feasibility of or satisfaction with the telehealth

intervention was not a focus of this review, many studies re-

ported such findings. Of the nine studies, four concluded that

Fig. 1. Flowchart of literature search procedure for eligible studies.

AU5

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SYSTEMATIC REVIEW: TELEHEALTH FOR PALLIATIVE CAREGIVERS

the telehealth intervention was feasible.

1112,14,16

Five found

overall caregivers’ satisfaction with the intervention.

12,14–17

Discussion

This systematic review sought to assess the effectiveness of

telehealth interventions for caregivers of patients in home-

based palliative care across multiple studies. Overall, this

systematic review suggests there is evidence of overall satis-

faction in caregivers who undergo a telehealth intervention;

studies reported that the interventions were well received, and

few technological issues were reported.

Of the nine studies identified, the majority (66.7%) reported

improvement of quality of life and decreased level of care-

giver burden, anxiety, depression, and/or stress as a result of

the telehealth intervention. There was little duplication of

measures across the studies, making it difficult to assess the

impact of telehealth interventions across studies, but there is

at least weak evidence to support the use of telehealth as an

efficient and effective strategy in improving a variety of

quality of life indicators and alleviating psychological distress

of caregivers for palliative care patients, especially for those

living in underserved rural areas.

Based on the Cochrane Collaboration’s tool for risk analysis,

the quality of the studies was predominantly moderate. Meth-

odological limitations in study designs and/or small sample

sizes contributed to lower quality. As is common when con-

ducting research in palliative and hospice populations, re-

cruitment and attrition due to mortality challenged some of the

researchers. Only two of the nine studies used an experimental

design. More scientifically rigorous research is needed both in

palliative care and in the evaluation of telehealth interventions.

This review has several strengths. It utilized an extensive,

comprehensive, and reproducible search strategy. It utilized a

rigorous and transparent study quality assessment and applied

strict inclusion and exclusion criteria. The authors reviewed

all procedures and developed consensus as to content of the

extraction form and study quality evaluation.

Limitations of this review should be addressed as well. The

number of studies in this systematic review was lower than

might be expected. Chi and Demiris

found 52 experimental

studies reporting telehealth tools and interventions to support

family caregivers. However, there are few studies that specify

a focus on palliative, hospice, or advanced disease patients

only. Our findings include only English-speaking populations.

Telehealth interventions have the potential to improve the

experience of caregiving for those who care for palliative

patients, but more rigorous research to test and evaluate such

interventions is needed to justify telehealth approaches in

palliative care.

Disclosure Statement

No competing financial interests exist. AU4

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low risk, ; high risk, ; and unknown risk of bias, .

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support family caregivers. J Telemed Telecare 2015;21:37–44.

Address correspondence to:

Yongqiang Zheng, MA, MSSW

Kent School of Social Work

University of Louisville

Louisville, KY 40292

E-mail: yq.zheng@louisville.edu

Received: May 18, 2015

Accepted: July 1, 2015

AU1 Changed to match number given in text.

AU2 Are quotation marks needed around any of these phrases?

AU3 Because of graphic symbols in text, Table 2 is being treated as a figure.

AU4 Verify statement is correct or provide individual disclosure as needed.

AU5 No legend supplied with original submission. Provide new description as needed.

SYSTEMATIC REVIEW: TELEHEALTH FOR PALLIATIVE CAREGIVERS

TMJ-2015-0090-ver9-Zheng_1P.3d 09/01/15 1:03pm Page 7

ªMARY ANN LIEBERT, INC. VOL. 22 NO. 4 APRIL 2016 TELEMEDICINE and e-HEALTH 7

Assessing Telehealth in Palliative Care: A Systematic Review of the Effectiveness and Challenges in Rural and Underserved Areas

Article

Full-text available

Aug 2024

The integration of telehealth into palliative care has garnered significant attention due to its potential to enhance both access and quality of care, particularly for patients in rural and underserved areas. This interest stems from the need to address geographical and logistical barriers that traditionally hinder palliative care delivery. Despite its potential benefits, the effectiveness of telehealth and the challenges associated with its implementation remain underexplored, necessitating further investigation. This study aims to critically evaluate the effectiveness of telehealth in palliative care by focusing on several key areas: its impact on access to care, symptom management, patient satisfaction, and cost-effectiveness. To achieve this, a systematic review was conducted, synthesizing data from various studies that investigated telehealth interventions within palliative care settings. The review employed a comprehensive search strategy across electronic databases, concentrating on randomized controlled trials (RTCs) published between 2014 and 2024. To ensure the reliability of the findings, low-quality and unrelated studies were excluded, and the remaining studies were meticulously analyzed for bias and methodological quality. The review's findings indicate that telehealth significantly enhances access to palliative care, allowing patients to receive timely and appropriate care without the need for extensive travel. It also improves symptom management and patient satisfaction, aligning to provide patient-centered care. Additionally, telehealth is cost-effective by reducing expenses associated with travel and in-person visits. These benefits highlight telehealth's potential to address some of the critical challenges in palliative care delivery. Despite its advantages, implementing telehealth in palliative care is not without challenges. Technological barriers, such as inadequate infrastructure and device limitations, pose significant hurdles. Integration issues, including the need for seamless incorporation into existing care systems, and varying levels of digital literacy among patients and caregivers, also impact the effectiveness of telehealth. Addressing these challenges is crucial for optimizing telehealth's implementation. Ensuring that telehealth solutions are accessible, user-friendly, and well-integrated into care practices is essential for fully leveraging its potential benefits.

Attending physicians’ annual service volume and use of virtual end-of-life care: A population-based cohort study in Ontario, Canada

Article

Full-text available

Mar 2024
PLOS ONE

Importance Physicians and their practice behaviors influence access to healthcare and may represent potentially modifiable targets for practice-changing interventions. Use of virtual care at the end-of-life significantly increased during the COVID-19 pandemic, but its association with physician practice behaviors, (e.g., annual service volume) is unknown. Objective Measure the association of physicians’ annual service volume with their use of virtual end-of-life care (EOLC) and the magnitude of physician-attributable variation in its use, before and during the pandemic. Design, setting and participants Population-based cohort study using administrative data of all physicians in Ontario, Canada who cared for adults in the last 90 days of life between 01/25/2018-12/31/2021. Multivariable modified Poisson regression models measured the association between attending physicians’ use of virtual EOLC and their annual service volume. We calculated the variance partition coefficients for each regression and stratified by time period before and during the pandemic. Exposure Annual service volume of a person’s attending physician in the preceding year. Main outcomes and measures Delivery of ≥1 virtual EOLC visit by a person’s attending physician and the proportion of variation in its use attributable to physicians. Results Among the 35,825 unique attending physicians caring for 315,494 adults, use of virtual EOLC was associated with receiving care from a high compared to low service volume attending physician; the magnitude of this association diminished during the pandemic (adjusted RR 1.25 [95% CI 1.14, 1.37] pre-pandemic;1.10 (95% CI 1.08, 1.12) during the pandemic). Physicians accounted for 36% of the variation in virtual EOLC use pre-pandemic and 12% of this variation during the pandemic. Conclusions and relevance Physicians’ annual service volume was associated with use of virtual EOLC and physicians accounted for a substantial proportion of the variation in its use. Physicians may be appropriate and potentially modifiable targets for interventions to modulate use of EOLC delivery.

Use of virtual care near the end of life before and during the COVID-19 pandemic: A population-based cohort study

Article

Full-text available

Jan 2025
PLOS ONE

Background and aims The expanded use of virtual care may worsen pre-existing disparities in use and delivery of end-of-life care among certain groups of people. We measured the use of virtual care in the last three months of life before and after the introduction of virtual care fee codes that funded care delivery at the start of COVID-19 on March 14, 2020, and identified changes in the characteristics of people using it. Methods We used linked clinical and administrative datasets to study use of virtual care in the last three months of life among 411,564 adults who died between January 25, 2018, and November 30, 2022. Modified Poisson regression was used to measure the association of the use of virtual care in the last three months of life with the pandemic study period and its association with each person- and physician-level factor. Results 14,261 people (8%) used virtual care in the last three months of life before the pandemic, and 161,000 people (69%) used it during the pandemic (relative risk [RR] 8.76; 95% CI 8.48–9.05). Several individual patient characteristics were associated with statistically significant increases in the use of virtual care after March 14, 2020 (following the introduction of virtual care fee codes), compared to before such as among older adults, ethnic minorities, multiple chronic comorbid health conditions and higher frailty groups. Conclusions The introduction of new fee codes broadening technology and funding for end-of-life care at the start of pandemic combined with pandemic-related effects was associated with a substantial increase in the use of virtual care near the end of life among certain groups and a general leveling of pre-existing disparities in its use. Virtual end-of-life care delivery may strengthen person-centredness for individuals with limited ability to attend in-person appointments and by providers who may not have previously engaged in such care.

Hello! How can I help you? The role of telephone consultation in palliative care for patients at home

Article

Full-text available

Mar 2024

This work aims to describe and analyse the telephone consultation (TC) for palliative care (PC) patients at home and their caregivers provided by a PC team in Portugal in 2020. This study is observational, retrospective, cross-sectional and correlational, conforming to the STROBE checklist. Records of calls between 01/01/20 and 31/12/20 and clinical process consultations were analysed for trend clearance, including cross-tabulations to look for associations between call characteristics. Call data included information on the caller, patient, problem, utility and choice of service. The data were analysed using the statistical program SPSS software (V.26). During 2020, 494 calls were answered. The majority of the contacts were made by relatives and answered by nurses. The main reason for the contact was symptom management. The TC solved 92.91% of the problems, allowing the patient to remain at home, which is associated with a decrease in the number of hospitalisation days and admissions to the emergency department. The identification of the causes that motivated the calls and who solved them allows us to anticipate some needs that may be less controlled at home. Call distribution time may help allocate human resources better. TC is a viable alternative to traditional hospital follow-ups.

Comparison of physician-delivered models of virtual and home-based in-person care for adults in the last 90 days of life with cancer and terminal noncancer illness during the COVID-19 pandemic

Article

Full-text available

Nov 2024
PLOS ONE

Objective To measure the association between types of serious illness and the use of different physician-delivered care models near the EOL during the COVID-19 pandemic. Design, setting and participants Population-based cohort study using health administrative datasets in Ontario, Canada, for adults aged ≥18 years in their last 90 days of life who died of cancer or terminal noncancer illness and received physician-delivered care models near the end-of-life between March 14, 2020 and January 24, 2022. Exposure The type of serious illness (cancer or terminal noncancer illness). Main outcome Physician-delivered care models for adults in the last 90 days of life (exclusively virtual, exclusively home-based in-person, or mixed). Results The study included 75,930 adults (median age 78 years, 49% female, cancer n = 58,894 [78%], noncancer illness n = 17,036 [22%]). A higher proportion of people with cancer (39.3%) received mixed model of care compared to those with noncancer illnesses (chronic organ failure 24.4%, dementia 37.9%, multimorbidity 28%). Compared to people with cancer, people with chronic organ failure (adjusted odds ratio [aOR], 1.61, 95% CI: 1.54 to 1.68) and those with multimorbidity ([aOR], 1.49, 95% CI: 1.39 to 1.59) had a higher odds of receiving virtual care than a mixed model of care. People with dementia had a higher odds of home-based in-person care than a mixed model of care ([aOR], 1.47, 95% CI 1.27, 1.71) and virtual care ([aOR], 1.40, 95% CI 1.20–1.62) compared to people with cancer. Conclusion A person’s type of serious illness was associated with different care models near the end-of-life. This study demonstrates persistent disease-specific differences in care delivery or possibly the tailoring of models of care in the last 90 days of life based on a person’s specific care needs.

Telehealth-facilitated palliative care enables more people to die at home: An analysis of clinical outcomes and service activity data

Article

Full-text available

Jan 2025
BMC Palliat Care

Background Telehealth-facilitated models of palliative care are a patient-focused way to deliver specialist care in or closer to home for people with a life-limiting illness. Telehealth can increase access to palliative care and support people experiencing symptoms of advanced disease in their own home, reducing the discomfort of travel. This retrospective cohort study examines the activity and outcomes of a regional telehealth-facilitated palliative care service to (i) describe which patients are most likely to use telehealth; and (ii) explore possible impacts of telehealth on patient outcomes including place of death, timely access to care, responsiveness to urgent needs and pain management. Methods Analysis of service activity data (patient demographics, care modality, consultation frequency) and Palliative Care Outcomes Collaborative data registry (place of death, timely access to palliative care, responsiveness to urgent needs as measured by time in unstable phase, pain management) were undertaken. Outcomes were compared between patients who had no videoconsultations (n = 683) and those who had one or more videoconsultations (n = 524). Results Compared to people who had no videoconsultations, those who had at least one appointment via video were: more than twice as likely to die at home and spent a shorter amount of time in the unstable phase of palliation. Mixed results were found regarding timely access to palliative care. There was no significant difference in pain management between consultation modes. Conclusion Telehealth-facilitated palliative care has multiple benefits, including the increased likelihood of fulfilling someone’s wish to die at home, often their preferred place of death.

Quality of Virtual versus In-Person Outpatient Palliative Care: Disparities by Language and Race

Article

Jan 2025
J PAIN SYMPTOM MANAG

Outcomes and Issues Addressed by Palliative Care in the Neurology Clinic

Article

Jul 2024

Patients with neurological illnesses have many palliative care needs that need to be addressed in the outpatient clinical setting. This review discusses existing models of care delivery, including services delivered by neurology teams, palliative care specialists, telehealth, and home-based programs. We review the existing literature that supports these services and ongoing limitations that continue to create barriers to necessary clinical care for this vulnerable patient population.

Healthcare use and out-of-pocket costs for rural family caregivers and care recipients in a randomized controlled trial

Article

May 2024
J AM GERIATR SOC

Background: Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out-of-pocket spending for both FCGs and CRs. Methods: TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self-reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out-of-pocket healthcare spending (e.g., deductibles and coinsurance), and health-related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions. Results: The study included 282 FCG-CR dyads across three U.S. states. Follow-up over the 6-month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56-0. 99). Total out-of-pocket spending was not significantly different for TPC versus control. Across both groups, mean out-of-pocket spending for dyads was

1401.85, with healthcare payments contributing

1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56-0.89). Conclusions: This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out-of-pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. Clinicaltrials: gov # is NCT03339271.

Effects of Telemedicine on Informal Caregivers of Patients in Palliative Care: Systematic Review and Meta-Analysis

Article

Full-text available

Apr 2024

Background Telemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear. Objective This study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care. Methods A systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio. Results A total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13) and anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51) or quality of life (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85). Conclusions Although telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.

A systematic review of telehealth tools and interventions to support family caregivers

Article

Full-text available

Dec 2014

We conducted a systematic review of studies employing telehealth interventions which focused on family caregivers' outcomes. The Embase, CINHAL, Cochrane and PubMed databases were searched using combinations of keywords including "telehealth," "telemedicine," "telecare," "telemonitoring," "caregiver" and "family." The initial search produced 4205 articles, of which 65 articles met the inclusion criteria. The articles included 52 experimental studies, 11 evaluation studies, one case study and one secondary analysis. Thirty-three articles focused on family caregivers of adult and older patients, while 32 articles focused on parental caregivers of paediatric patients. The technologies included video, web-based, telephone-based and telemetry/remote monitoring. Six main categories of interventions were delivered via technology: education, consultation (including decision support), psychosocial/cognitive behavioural therapy (including problem solving training), social support, data collection and monitoring, and clinical care delivery. More than 95% of the studies reported significant improvements in the caregivers' outcomes and that caregivers were satisfied and comfortable with telehealth. The review showed that telehealth can positively affect chronic disease care, home and hospice care. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Home Telehealth Uptake and Continued Use Among Heart Failure and Chronic Obstructive Pulmonary Disease Patients: a Systematic Review

Article

Full-text available

Apr 2014
ANN BEHAV MED

Home telehealth has the potential to benefit heart failure (HF) and chronic obstructive pulmonary disease (COPD) patients, however large-scale deployment is yet to be achieved. The aim of this review was to assess levels of uptake of home telehealth by patients with HF and COPD and the factors that determine whether patients do or do not accept and continue to use telehealth. This research performs a narrative synthesis of the results from included studies. Thirty-seven studies met the inclusion criteria. Studies that reported rates of refusal and/or withdrawal found that almost one third of patients who were offered telehealth refused and one fifth of participants who did accept later abandoned telehealth. Seven barriers to, and nine facilitators of, home telehealth use were identified. Research reports need to provide more details regarding telehealth refusal and abandonment, in order to understand the reasons why patients decide not to use telehealth.

A pilot study of the effectiveness of home teleconsultations in paediatric palliative care

Article

Full-text available

Nov 2012
J TELEMED TELECARE

We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were allocated, non-randomly, to a control group (usual care) or an intervention group (usual care with the addition of home telehealth consultations). The primary outcome measure was quality-of-life score. Caregivers were surveyed for up to 99 days following recruitment. A descriptive analysis of the quality-of-life data showed no differences between caregivers in the two groups. However, important lessons were learnt regarding factors which influence the success of studies in this population group, and the domains of caregiver quality-of-life that warrant intervention. Palliative care is complex, and multiple interventions and supports are required if care is to be managed at home. Home telehealth consultations are a feasible and acceptable means of facilitating a palliative care consultation which can reduce the burden on families at a distressing time.

The PRISMA Statement for Reporting Systematic Reviews and Meta-Analyses of Studies That Evaluate Health Care Interventions: Explanation and Elaboration

Article

Jan 2009

The Cochrane Collaboration's tool for assessing risk of bias in randomised trials

Article

Jan 2011

Telehealth Technologies: Changing the Way We Deliver Efficacious and Cost-Effective Diabetes Self-Management Education

Article

Nov 2014

Nearly 26 million people diagnosed with diabetes mellitus in the U.S. must actively engage in self-management of the disease. Telehealth is a population-based approach with the potential to optimize resources and increase access to diabetes self-management education/training (DSME/T). We conducted a systematic literature review on diabetes education and telehealth (2009-April 2014) to determine whether remote DSME/T sufficiently improves behavioral, clinical, and economic outcomes and access. Twenty-five out of 213 identified systematic literature reviews or meta-analyses (two on mobile health were identified via a Google search) met our criteria and were fully reviewed; 22 additional studies and reports of diabetes-related technologies and interventions were also identified. Telemedicine has the potential to offer great utility, but guidelines for high research standards must be introduced, adopted, and proactively refined to determine the strengths of this technology for DSME/T, behavioral change, cost-effective care, and improved access in chronic disease self-management.

A Systematic Review of the Cost and Cost-Effectiveness of Telehealth for Patients Suffering from Chronic Obstructive Pulmonary Disease

Article

May 2014
J TELEMED TELECARE

We conducted a systematic review of the evidence on the costs and cost-effectiveness of telehealth for patients with chronic obstructive pulmonary disease (COPD). A literature search identified six relevant economic evaluations that were assessed according to the Consensus Health Economic Criteria list (CHEC list). Three studies were from North America and three studies were from Europe. All studies reported the use of home monitoring devices that measured and transmitted different physical indicators to nurses who provided personalised feedback to patients during weekdays. The six studies involved a total of 559 COPD patients of whom 281 were randomised to telehealth. The review demonstrated a potential for cost savings. All six studies reported a lower average cost per patient with telehealth plus usual care compared with usual care alone. However, the quality of the economic evidence was poor. Five studies were evaluated as low quality and one study was evaluated as moderate quality, with CHEC list scores of 21-68%. Caution is advised for healthcare decision-makers seeking large-scale implementation of telehealth in routine clinical practice. The clinical effectiveness of such implementations with follow-up exceeding 12 months has not yet been demonstrated.

The complexity of family caregiving: Use and perceptions of home telehealth in palliative cancer care

Article

Anita Stern

The purpose of this case study was to explore how telehomecare affects the process of family caregiving in palliative cancer care. The telehomecare intervention in the Randomized Controlled Trial from which study participants were selected consisted of specialist Registered Nurses who communicated with patients and families using videophones, with the option of remote monitoring. Qualitative data were collected from face-to-face interviews, direct observation, nursing documentation, and a focus group. Quantitative data were collected from computerized nursing documentation using a chart abstraction form and analyzed for patterns of use.^ The perceptions of telehomecare by patients, family caregivers, and the telehomecare nurses were generally positive, despite infrequent use of some components of the system by many families, whereas the attitudes of other health care professionals more removed from the intervention were more negative. Themes that emerged from the data, viewed as attractors in complex systems that influence attitudes and behaviours, were: (1) enhanced access to health care, (2) enhanced continuity of care, (3) sense of presence in palliative care, (4) convenience, (5) reassurance, (6) increased confidence, (7) decreased sense of isolation, (8) evolving challenges with technology, (9) lack of integration of telehomecare into regular care, (10) lack of interdisciplinary team support, and (11) importance of timing of telehomecare in the palliative trajectory. Complexity theory highlights the important role interactions between agents in complex adaptive systems play in determining how telehomecare is perceived and used.^ Future studies need to collect longitudinal data over longer periods of time, clarify the value of videophone versus telephone contact, and explore alternate technologies that could be adopted by patients, family caregivers, and multidisciplinary health care professionals to enable family caregiving in palliative care.^

Telehospice Tools for Caregivers

Article

Oct 2007

This pilot study introduces videophones into the homes of elderly caregivers of dying patients, evaluating their usefulness as a communication tool. A total of 12 senior caregivers from two hospice agencies were recruited into the study. Portable videophones were installed allowing caregivers to conduct video-calls with hospice staff. Findings indicate that the anxiety scores significantly decreased (p < 0.05) for participants over time. Differences in quality-of-life scores (including individual dimensions as well as overall score) were not statistically significant. Staff members at one of the participating hospice agencies were originally reluctant to recruit caregivers to the study. Videophones were perceived as easy to use by caregivers who overall saw benefit in the visual feedback during their communication with hospice staff.

A systematic Review of the Mediating Role of Knowledge, Self-efficacy and Self-care Behaviour in Telehealth Patients with Heart Failure

Article

Sep 2012
J TELEMED TELECARE

We conducted a systematic review of controlled trials and pre-post studies to examine whether the putative benefits of telehealth, notably, improvements in clinical outcomes and quality of life, are mediated by increases in knowledge, self-efficacy and self-care behaviour in patients with heart failure. Telehealth was defined as any system of home-based self-monitoring of signs or symptoms of heart failure that transferred data for remote assessment by healthcare providers. Seven electronic databases were searched for studies that assessed any of six pathways in a proposed model. Data were independently extracted by two reviewers. Twelve studies met the inclusion criteria and provided evidence for or against one or more of the six pathways. Although all of the pathways in the model can be theoretically justified and three of the six relationships have been established in heart failure samples outside the context of telehealth, none of the pathways in the model were supported by the telehealth studies reviewed. Failure to replicate previously established relationships emphasizes the weakness of the telehealth literature, which impedes our ability to address questions such as how telehealth might achieve beneficial outcomes.