The effectiveness of telehealth care on caregiver burden, stress mastery, and family function in family caregivers of heart failure patients: A quasi-experimental study
Abstract
Background: Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been
reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home.
Objective: To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only.
Design: This is a quasi-experimental study design.
Methods: Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October, 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-hour remote monitoring of patients’ health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress
mastery and family function were collected before discharge planning at the hospital and one month later at home. Effects of group, time, and group-time interaction were analyzed using Mixed Model in SPSS (17.0).
Results: Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function-- Relationships between family and subsystems and Relationships between family and society were improved in the experimental group compared to the comparison group, but Relationships between family and family members was not different.
Conclusions: The results provide evidence that telehealth care combined with discharge planning could reduce family caregiver burden, improve stress mastery, and improve family function during the first thirty days at home after heart failure patients are discharged from the hospital. Telenursing specialists had better include families into their practice with the concepts of providing transitional care to help patients and families successful cross the critical transition stage.
What is already known about this topic?
Systematic review evidence supports the use of telemedical monitoring in chronic heart failure to reduce total mortality and hospital admissions.
A structured discharge plan tailored to the individual patient may bring about a small reduction in length of hospital stay and readmission rates, and an increase in patient satisfaction. The impact on health outcomes is uncertain.
Caregivers of patients with heart failure experience caregiver burden due to physical, psychosocial, social and financial stresses.
What this paper adds
Telehealth care combined with discharge planning reduced the family caregivers’ burden, including the temporal, developmental, physiological, emotional, social, and financial burdens.
Telehealth care combined with discharge planning improved family caregivers’ mastery of stress compared to the control group who received only discharge planning, although “acceptance” was unaffected.
Telehealth care combined with discharge planning improved the family caregivers’ family function. Family relationships with the subsystem and society were improved while providing care for patients with heart failure, but not the relationship between family and family members.
Heart failure is a life-threatening and progressive condition associated with multiple chronic diseases. This progressive condition causes patients to require repeated
hospitalisations, results in poor life expectancy and impaired quality of life, and represents a heavy burden to family and society (AHA, 2008; Hunt et al., 2005). Patients with heart failure need advanced disease management and appropriate nursing care to help the patients and family caregivers to successfully transition from the hospital to home (Davidson et al., 2007, Riegel & Dickson, 2010).
The modern trend of using telehealth remote patient monitoring to improve chronic disease management was reported to reduce hospitalisation days and emergency room visits (Schwartz & Britton, 2011). Telehealth care may help the patients and families optimize adherence to therapy and promote early detection of signs and symptoms of cardiac decompensation. Four systematic reviews demonstrated that telemotoring in chronic heart failure can reduce total mortality as well as the number and duration of hospital admissions for worsening heart failure (Clarke, et al., 2011, Chaudhry et al., 2007, Inglis, et al., 2010, Klersy, et al., 2009). However, the costs of telemonitoring programs are higher compared to less complex programs (Chaudhry, et al., 2007). Recently, two prospective studies indicated thattelemedical interventional monitoring not significantly reduction in all-cause mortality (Koehler, et al., 2011, Chardhry, et al., 2010). These different conclusions provoked arguments that different telemedicine approaches cause various results (Anker, Koehler,
Abraham, 2011). New technology requires appropriate clinical implementation. Telehealth care providers should reconsider heart failure management and focus on crisis prevention and treatment and stabilisation and self-empowerment of patients, not only telemonitoring
(Anker, Koehler, Abraham, 2011, Winkler and Koehler, 2011), but also providing health education, consultation, and supports by telenursing specials.
Nurses play an important role in providing individualised discharge planning for patients with heart failure (Vreeland and Montgomery, 2011, Manning, 2011). Comprehensive transitional care for older adults hospitalised with heart failure is illustrated by Naylor and colleagues' study to increaselength of time between hospital discharge and readmission or death, reduce the total number of rehospitalisations, and decrease healthcare costs (Naylor et al., 2004). A systematic review of telehealth services demonstrated that nurses were able to improve heart failure patients’ self-care behaviours such as daily weighing, medication management, exercise adherence, fluid and alcohol restriction, salt restriction, and stress reduction (Radhakrishnan and Jacelon, 2011).
Transitioning heart failure patients from the hospital to home is a stressful event for family caregivers according to quantitative and qualitative studies. A systematic review of current instruments to measure caregivers of persons living with heart failure showed negative perceptions of caregiver burden, caregiver strain, and caregiver demand (Harkness and Tranmer, 2007). Measurements of caregiver burden are not sensitive to actual
experiences of family caregivers of patient with heart failure, for example anxiety, fear, communication, and changes to daily life and relationships are not measured (Luttik et al., 2007, Hagan, et al., 2007). Kang and Nolan (2011) systematically reviewed 10 qualitative studies related to caregivers’ experiences caring for patients with chronic heart failure and synthesized five key themes: sharing of caring; suffering from anxiety; being isolated; enjoying a good relationship; and searching for support. Telenurses could coordinate and integrate continuity of care as patients’ transfer from the hospital transit to home thereby relieving caregiver burden(Riegel & Dickson, 2010). Indicators of successful transitions are subjective well-being, role mastery, and the well-being of relationships based on the Meleis’ transitional theory (Schumacher & Meleis, 1994).
The American Nurses Association defines telehealth as “the removal of time and
distance barriers for the delivery of health care services or related health care activities. Some of the technologies used in telehealth include: telephones, computers, interactive video transmissions, direct links to health care instruments, transmission of images and
teleconferencing by telephone or video.” (ANA, 1997). The International Council of Nurses (ICN) describes telenursing: "the use of telecommunications technology in nursing to enhance patient care. It involves the use of electromagnetic channels (e.g. wire, radio and optical) to transmit voice, data and video communications signals. It is also defined as
distance communications, using electrical or optical transmissions, between humans and/or computers." (ICN 2006).
The department of Industrial Technology (DoIT) of the government of Taiwan announced a “U-care project” in 2006, and the Department of Health (DOH) executed the “Taiwan pilot Telecare project.” The reasons for aggressive policy in developing the Telehealth service were attributed to a low fertility rate, younger people remaining single, long life expectancy and advanced medical technology in better economic conditions in Taiwan. Elderly people in Taiwan prefer to age at home and to live in the community rather than stay in institutions, as staying in the institution means isolation from their family members and close friends and requires leaving their familiar living environment (Huang, Chen, Chiang, 2008).
Previous reviews reported that telehealth service with discharge planning in transitional care for heart failure patients would increase self-management (Radhakrishnan and Jacelon, 2011), reduce the mortality rate and readmissions (Inglis, et al., 2010), and limit the
consumption of medical resources (Anker, Koehler, Abraham, 2011, Winkler and Koehler, 2011). However, the effect of nurse-led transitional care in telehealth systems on family caregivers during discharge still needs to be evaluated from perspectives such as burden, stress mastery and family function.
Heart failure is characterised by the heart’s inability to contract, resulting in low cardiac output that results in progressive heart function and sudden changes in vital signs (Carelock & Clark, 2001; Natanzon & Kronzon, 2009). Low cardiac output limits organ perfusion, leading to reduced exercise capacity, fatigue, and shortness of breath. These symptoms limit patients’ daily activity (Hu et al., 2010), compromising their health (Tung et al., 2011) and threatening their lives with various symptomatic and asymptomatic arrhythmias (Cleland et al., 2002). Because patients with heart failure have multiple hospital readmissions, a poor prognosis and poor quality of life, there may be a considerable increasing the caregivers’ burden than impact on the physical, psychological and social health of family caregivers (Pressler et al., 2009). Family caregivers have great responsibilities when providing unpaid care for heart failure patient at home, including following the sign/symptoms of heart failure, detecting a change in condition, and providing necessary daily care. These responsibilities are associated with physical, psychological, and financial burdens. Additional support and guidance are particularly helpful during care transitions (Collins & Swartz, 2011; Bakas et al., 2006; Stewart 2005). The most difficult tasks for family caregivers are those dealing with patients' behaviour, emotional problems and financial problems, while still making time for social activities (Bakas et al., 2006; Pattenden et al., 2007). The heavy burden and role changes affect caregiver health and family relationships, as reported in Kang and Nolan's study on family caregivers of heart failure patients (Kang and Nolan, 2011). Taking care of
patients with heart failure at home leads to dependence on family caregivers and impacts family function, especially the relationships between family members and the integration of family members into broader social networks and the community. It is necessary to develop and evaluate interventions that can improve outcomes for family caregivers (Collins & Swartz, 2011; Pressler et al., 2009; Pattenden et al., 2007).
1.2. Telenursing care for patients with heart failure
Nurses play a significant role in the success of telehealth interventions (Dias, et al, 2009; Naditz, 2009). Telenursing care helps vulnerable people such as the elderly or those with chronic conditions lead independentlives by providing them with consultation, assessment, telephone triage/telephone advice, emergency support, disease management, and homecare (Naditz, 2009; Jonsson & Willman, 2008; Lorentz, 2008). Telenurses have advanced special abilities to communicate with family caregivers and to provide the evidence-based
professional consulting and supportive care based on technology that improves the efficiency of patients’ disease management (Dias et al., 2009; Hoglund & Holmstrom, 2008; Snooks et al., 2008).
Four previous systematic reviews indicated telemedical monitoring in chronic heart failure can reduce total mortality as well as the number and duration of hospital admissions for worsening heart failure (Clarke, et al., 2011, Chaudhry et al., 2007, Inglis, et al., 2010, Klersy, et al., 2009). Nurses implement telehealth interventions that include reviewing
transmitted clinical data, assessing individuals, coaching, and installing telehealth. Radhakrishnan and Jacelon (2011) reviewed fourteen studies and concluded that the proactive role of nurses in telehealth care for heart failure patients includes delivering contextually relevant heart failure knowledge, building heart failure self-care skills, and sustaining self-care behaviours.
In Taiwan, many telehealth care systems have been implemented since 2007 as part of a government campaign to replicate a feasible care model (Huang, Chang, & Chiang, 2008). One of those hospitals, the National Taiwan University Hospital (NTUH), has a division of Integrative Management of Cardiovascular Disease in the Telehealth Center, which was the site for this study (National Taiwan University Hospital -TeleCare, 2011). The Telehealth Center in the NTUH emphasises patient-centred care that integrates the patient’s electronic health record, physicians’ diagnostic analysis, disease management according to heart failure guidelines and follow-up from the hospital to home. The telehealth centre can perform daily management and analysis of all data uploaded by the patient, including physiological parameters such as heart rate, blood pressure, blood sugar, and electrocardiography (ECG). Doctors and nurses can monitor patient health through tele-devices provided by the medical centre and thus reduce patient transportation time and increase the ability to offer immediate help in emergency situations (National Taiwan University Hospital TeleCare, 2011). Patients participating in telehealth services receive appropriate care at all times from the on-duty
physicians as well as telenursing specialist who provide necessary information via their mobile phones to assist with disease management. Patients are also able to consult their telenursing specialist via telecommunication to receive test results and obtain advice with a 24-hour service. Providing around-the-clock health care accessible from home promotes healthy living and reduces complications in patients with chronic comorbidities and after surgery.
1.3. Transition theory
This study was developed and guided by Meleis’s transition theory (Chick & Meleis, 1986; Schumacher & Meleis, 1994). Changes in the health and illness status of individuals create a process of transition, and clients in transition tend to be more vulnerable to risks that may affect their health and their families. Nurses can provide assistance to ensure these life transitions are managed successfully (Meleis, Sawyer, Im, et al., 2000; Meleis, 2010;
Schumacher & Meleis, 1994). Returning home represents a substantial stressful event for the family of heart failure patients (Harkness and Tranmer, 2007; Luttik et al., 2007, Hagan, et al., 2007; Kang & Nolan 2011). Chick and Meleis (1986) define transitions as, “The passage or movement from one state, condition or place to another.” Transition often requires a person to incorporate new knowledge or alter behaviours, thereby changing the definition of self in the new social context (Meleis et al., 2000; Meleis, 2010). According to Meleis et al., (2000) there are several principles of a successful transition, including awareness,
engagement, change and difference. The challenges for nurses include understanding the transition process and developing interventions that are effective in helping patients regain stability and a sense of well-being (Meleis et al., 2000). Indicators of successful transitions are subjective well-being, role mastery, and the well-being of relationships (Schumacher & Meleis, 1994). A successful transition involves not only a sense of individual well-being with effective role mastery, but also the being of family relationships. Relationship well-being has been conceptualised in terms of family adaptation, family integration, enhanced appreciation and closeness, and meaningful interaction (Meleis et al., 2000; Schumacher & Meleis, 1994). Therefore, in this study, we evaluated caregiver burden by measuring the subjective well-being of family caregivers, stress mastery to measure role mastery, and the Feetham family function assessment to measure relationship well-being.
The objectives of this study were to evaluate the effect of nursing-led transitional care combining discharge planning and telehealth care on caregiver burden, stress mastery, and family function. Family caregivers of heart failure patients were evaluated and compared to caregivers of patients receiving only traditional discharge planning during the transition from hospital discharge to home.
2. Methods 2.1. Design
A two-group pretest-posttest design was used. Patients with heart failure have a critical situational and illness transition, as patients with the diagnoses of heart failure and acute
myocardial infarction have the highest readmission rates within 30 days among recorded by health insurance companies (Armola & Topp, 2001). Follow-up plans are suggested to decrease readmission rates within 30 days (Armola & Topp, 2001). Therefore, data were collected at the first contact with patients and families (discharge planning) and at 30 days follow-up at home. This design did not incorporate blinded randomisation since participation in telehealth care requires patients’ and families’ payment and cooperation. Every family in the experimental group paid 6000 NT dollars per month to receive the telehealth device and telehealth care from a cardiology telenursing specialist.
2.2. Participants
Patients with heart failure and their primary family caregiver were recruited as a dyad by a research nurse from the Heart Failure Center, cardiac surgical ward, or cardiac medical ward of a medical centre in northern Taiwan. Family caregivers were included in the study if they met the following criteria: (1) > 18 years old and without cognitive impairment; (2) able to read and answer the questionnaire, as well as communicate in Taiwanese; (3) live with the heart failure patient for at least 6 months; (4) agree to participate and sign an informed consent; and (5) learn the related knowledge and skills, including measurement of daily physical parameters and uploading data to the telehealth centre.
Caregivers were excluded according to the following criteria: (1) not related to the patient or were an employee (i.e., foreign housemaid or special nurse); and (2) could not
appropriately use telehealth devices after receiving extensive education provided during discharge planning from telenursing specialists. Sixty-three heart failure patients were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre between May and October, 2010. Three patients refused to answer the
questionnaire. Because telehealth care data were transmitted from home to the call center via internet (3G or WiFi), patients who did not have an internet connection were placed in the traditional discharge planning group. Some family members could not agree on the use of home-based monitors or were concerned about privacy issues; these patients were also placed in the traditional discharge planning group. The final sample included 30 families in the experimental group participating in telehealth care and 30 families in the comparison group (see details below). All 60 families completed the pretest and posttest without withdrawing.
The sample size was estimated based on Cohen’s (1992) suggested criteria for comparing the means of two groups with a large effect size and α=0.05, which indicated a necessary sample size of 26 for each group. Re-calculation of the power using the sample size of 30 for each group showed 61% power to detect a difference of 7.57 in group mean scores on Feetham's Family Functioning Survey (FFFS; Roberts & Feetham, 1982) at a significance level (alpha) of 0.05 using a two-sided z-test. These results assume two sequential tests using the O'Brien-Fleming (1979) spending function to determine test boundaries.
Every patient with heart failure received discharge planscreated by a case manager before their discharge (See 2.5. Traditional discharge planning). After the case manager implemented the discharge plan, the telenursing specialist explained telehealth care to the experimental group participants from introduction to implementation.
Telehealth care for heart failure patients was designed by a team of cardiac physicians and nurses in the division of Integrative Management of Cardiovascular Disease at the NTUH Telehealth Center. Patients in the experimental group were discharged with a telehealth device that connected them to a central platform at the NTUH. Patients with heart failure manifestations (sensation of breathing exertion, shortness of breath, leg oedema, fluid retention) and impaired left ventricular contractility (left ventricular ejection fraction≦40% by echocardiography or Tc99m left ventriculography) were enrolled in the study. Family caregivers were trained by a telenursing specialist to measure patients’ physiological parameters at home and to upload these data to the Telehealth Center. These data were monitored 24 hours per day, recorded, and analyzed by telenursing specialist who informed on-duty physicians about the patients’ condition. Patients initially were followed up at an outward patient clinic (OPD) at a 4-week interval. Patients were managed according to the American College of Cardiology (ACC)/ American Heart Association (AHA) guidelines for heart failure management (ACC/AHA, 2001 & 2005).
referral services by telephone for 7 days per week. They recorded the vital signs and the body weight every day. The telenursing specialist also gave the patients health education about the pathophysiology of heart failure, dietary therapy and limiting fluid intake. Patients uploaded measurements recorded by physiologic sensors everyday and as needed from home. The physiologic sensors included electrocardiogram, blood pressure, blood sugar and
oxygenation. The telenursing specialist viewed these data and gave feedback instructions including controlling body weight, monitoring urine output, taking medications as directed, controlling fluid intake and explaining medication side effects. If the symptoms and signs of heart failure (sensation of breathing exertion, shortness of breath, leg oedema, and fluid retention) or body weight gain up to 1.5-2 kg per week developed, the telenursing specialist would arrange for the patient to visit the emergency station or be admitted after a discussion with the physician. The telenursing specialist also informed attending physicians and patients if there were new onset of atrial or ventricular arrhythmias. The patient could communicate with the telenursing specialist anytime when their condition changed. After discharge from the hospital, the telenursing specialist communicated with the patient within 48-72 hours (Ho et al., 2007).
2.4. Comparison Group: Traditional Discharge Planning Only
Discharge planning was performed by a hospital-based case manager who instructed the family caregivers to assess patient signs and symptoms, taught relevant health care skills and
assisted with the preparation of home facilities. If the family caregivers had problems, they could communicate with the case manager by telephone as needed. The case manager actively contacted the family caregiver to understand the patient’s condition and provide health consultation two weeks after discharge. The case manager also covered the physical, psychological, and social problems of families and patients; however, these issues were not continually monitored through communication with the health care team every week. 2.5. Data Collection
Data were collected from June to August 2010. One case manager provided the discharge plan with a consistent focus on patient-centred care. Six well-trained telenursing specialists monitored data and provided education and counselling 24 hours per day for 7 days per week. Telehealth care was provided with nurses on both day and night shift duty. One nurse researcher (the second author) collected data from family caregivers on caregiver burden, stress mastery, and family function at two times: during discharge planning (before patient discharge) and at the patients’ 1-month follow-up visit in the cardiac clinic.
2.5.1. Caregiver burden. The Chinese version of the Caregiver Burden Inventory (CBI) (Chou, Jiann-Chyun & Chu, 2002; Novak & Guest, 1989) was used to assess caregiver burden (an indicator of caregivers’ subjective well-being). The 28-item CBI has six domains: time burden; developmental burden; physiological burden; emotional burden; social burden and cost of care. Responses are rated on a self-reported 5-point Likert scale, with higher
scores indicating a greater burden. The internal consistency (Cronbach’s α) for the subscales ranged from 0.73 to 0.86 (Chou et al., 2002; Novak & Guest, 1989). In this study, the CBI subscales had Cronbach’s α-values ranging from 0.75 to 0.90.
2.5.2. Mastery of stress related to caregiver role. Mastery of stress in the caregiving role was measured by the Mastery of Stress Scale (MSS; Younger, 1993). This 89-item
instrument has five domains: Certainty; Change; Acceptance; Growth; and Stress (Younger, 1993). It measures the ability of a human to respond to a difficult situation by gaining
competence, control, and dominion over the stress. Responses to each question are rated on a 5-point Likert scale, with higher scores indicating greater mastery. The internal reliability (Cronbach’s α) of the five subscales ranged from 0.84 to 0.94, and the 2-week test-retest reliability was 0.84 (Younger, 1993).
For this study, the MSS was translated from English to Chinese, back-translated, and pretested by an experienced English translator (one English professor) as recommended by Brislin et al. (1973). The first Chinese version of the scale was back-translated to English by a native Chinese-speaking English professor to verify the research instrument. The back-translated English version scale was refined by two bilingual experts and agreed upon by Dr. Younger. The final Chinese version was pretested for readability and clarity among four monolingual Chinese-speaking family caregivers of heart failure patients. These family caregivers easily understood and answered all items. In this study, the subscales of the
Chinese version MSS had Cronbach’s α-values ranging from 0.76 to 0.88.
2.5.3. Family functioning. Family functioning was assessed using the Chinese version of the Feetham Family Functioning Survey (FFFS) (Hohashi et al., 2008; Roberts & Feetham, 1982). The FFFS includes three subscales to assess the three aspects of family relationships: (1) relationships between the family and each family member; (2) relationships between the family and its subsystems (e.g., housework, support); and (3) relationships between the family and society (Roberts & Feetham, 1982). This conceptualisation is appropriate to measure relationships between family members and integration of family members within broader social networks and the community (Schumacher & Meleis, 1994). The Chinese version of the FFFS has 25 items that are rated according to the following three dimensions: (1) How much is there now? (b) How much should there be? (c) How important is this to you? For each dimension, the item is rated on a 7-point Likert scale with 1 corresponding to “little” and 7 corresponding to “much” (Hohashi et al., 2008). The reliabilities (Cronbach’s α) of the original vs. Chinese version of the FFFS for the three dimensions were 0.83 vs. 0.89, 0.74 vs. 0.77, and 0.72 vs. 0.73, respectively (Hohashi et al., 2008; Roberts & Feetham, 1982).
2.6. Ethical Considerations
This study was approved by the Institutional Review Board of the hospital where the study was conducted (201005006R). Patients and their caregivers were informed of the study
details and procedure, that their decision to participate was purely voluntary, that the right to medical treatment and nursing care would be equal in both groups, and that they had the right to leave the study at any time. After indicating that they understood and accepted these conditions, they were asked to sign an informed consent agreement. Copies of signed agreements were retained and restored by the researcher, patients, and family caregivers. 2.7. Data Analysis
All data were analyzed by descriptive and inferential statistics using SPSS 17.0 for Windows. Demographic data for the experimental and comparison groups were compared by chi-square analysis and independent samples t-tests. Scores for caregiver burden, mastery of stress scale, and family function were analyzed for the two groups using the SPSS Mixed Model. For repeated measurements, the mixed-model technique is better than the general linear model in dealing with missing data at follow-up and limited availability of variance-covariance structures (Chan, 2004). This type of design is called mixed-model ANOVA since it mixes between-groups factors (Fb), within-groups factors (Fw) and the interaction factor
(Fin) both between groups and within time.
3. Results
3.1. Participants’ Characteristics
The characteristics of the sixty family caregivers revealed no significant differences between the experimental and comparison groups in terms of gender, age, educational background, employment status, marital status, or religion (Table 1). Most family caregivers
were over 40 years old (80.0% vs. 86.7%) and the majority had a bachelor’s degree (53.4% vs. 53.3%). Most participants had worked before becoming a family caregiver.
Caregivers in the two groups also did not differ significantly in terms of their relationship to the patient or health status, nor did patients differ significantly in terms of health status or catheterisation. The majority of family caregivers took care of the patient for more than 1 year and less than 5 years (53.3% vs. 56.7%). Almost half of the caregivers were spouses (50.0% vs. 46.7%) and about half had at least one chronic disease (50.0% vs. 56.7%). The majority of the patients in this study were 60-79 years old and married. There were ten male patients and twenty female patients in each group. Most patients had at least one comorbid condition, with the majority having two to three comorbidities (76.7% vs. 66.7%). Only 13.3% of patients in the experimental group and 10.0% in the comparison group were catheterised and needed additional caring activities (Table 1).
3.2. Effects on Caregiver Burden
Data for each outcome variable at pretest (discharge) and posttest (one-month follow-up) are presented in Table 2 and Figures 1-3. Caregiver Burden Inventory (CBI) was used to measure caregivers’ well-being, with higher scores reflecting a lower level of well-being. The two groups did not differ significantly at pretest in outcome indicators, except for
developmental burden, which was significantly higher in the experimental group than in the comparison group (Table 2).
means family caregivers in the experimental group had a larger decrease in mean score of CBI (43.93 to 23.72) than the comparison group (41.5 to 32.37) after 30 days. The degree of improvement in each of the six Caregiver Burden Inventory (CBI) subscales (time burden, development burden, physiological burden, emotional burden and cost burden) was
significantly greater in the experimental group compared to the traditional discharge planning only group.
3.3. Effects on Mastery of Stress Related to Caregiver Role
Family caregivers in both groups improved their mastery of stress within pretest and posttest (Fw=42.933, p< 0.001). The significant grouptime interaction (Fin=-22.733, p<
0.001) in total MSS score showed that family caregivers in the experimental group increased significantly more than that of the comparison group. Four of the five domains of stress mastery (Certainty, Change, Growth, and Stress) significantly improved for the experimental group; the Acceptance domain did not improve (Table 2 and Figure 2).
3.4. Effects on Family Function
For both groups, family function significantly improved within pretest and posttest (Fw=7.40, p<0.001) as shown by the FFFS scores. The experimental group improved
significantly more than the comparison group on the FFFS subscale scores for “relationships between family and subsystems” (Fin=-1.500, p=0.007) and “relationships between family
and society” (Fin=-3.733, p<0.001). Telehealth care had no significant effect on relationships
4. Discussion
The results of this study show that nurse-led transitional care combining telehealth care and discharge planning significantly reduced family caregiver burden, improved mastery of stress related to the caregiver role, and improved family function. This facilitated successful transition for family caregivers of heart failure patient compared to the comparison group. Previous primary and systematic reviews focused on evaluating the patient’s health, self-care behaviours, and medication compliance (Jerant et al., 2003, Inglis, et al., 2010,
Radhakrishnan and Jacelon, 2011). Our findings emphasised the family caregivers’
adaptation through continuous consultation and monitoring by telehealth care. Some of the family caregivers participating in the telehealth care group commented that they felt more secure monitoring the condition of the patient; this is consistent with previous reports that participating in telehealth care provides a sense of security (Jonsson & Willman, 2008). Additionally, daily communication with telenursing specialist reduced their uncertainty, especially since they could frequently and quickly receive help and information from physicians.
The developmental burden of family caregivers in the telehealth care group was significantly higher at pretest than that in the comparison group. This difference might have been due to the family caregivers in the telehealth care group tending to be older than in the comparison group, although this difference was not significant. In older families, family
developmental tasks are higher than in younger families (Duvall & Miller, 1985). This might lead to increased caregiver depression (Caserta et al., 1996) and enhance the developmental burden. We expected that the heavier burden of caring for elderly patients with heart failure would motivate family caregivers to participate in and pay for telehealth care. Indeed, we found that telehealth care significantly increased caregiver and family function by reducing their care burden.
Previous studies have indicated that home-based primary care could reduce caregiver burden (Hunghes, et al., 2000), but failed to reduce the caregiver burden by exercise
intervention (Molloy, et al., 2006). Caregiver burden of the telehealth care group significantly declined not only for the total CBI score, but also in the six subscale scores, demonstrating that the telehealth care not only monitored the physical parameters of heart failure but also reduced caregiver burden compared to the comparison group. These results are consistent with reports that E-care (a telecommunications technology intervention) for family caregivers of people with dementia reduced their care burden and promoted well-being (Finkel et al., 2007) and a web-based family intervention for children with traumatic brain injury and their parents decreased their parents’ burden (Wade et al., 2005).
Family caregivers in both groups improved their mastery of stress related to the caregiver role over the month after discharge. Caregivers in the experimental group significantly improved in four domains in the mastery of stress scale (Certainty, Change,
Growth, and Stress) compared to the comparison group, but did not improve in the “Acceptance” domain. “Acceptance” is the third process of stress mastery in the theory of mastery (Younger, 1991). The definition of acceptance is to acknowledge events as true and normal and to agree to the terms of a situation in four situations: (1) to accept is to admit that crucial aspects of an event cannot be changed; (2) to suffer the impact of that realisation; (3) to give up any hopeless causes and expectations in the situation; and (4) to be predominantly free of longing for what has been lost; to change self rather than the event; and to find alternate sources of satisfaction for what is lost (Younger, 1991). In this study, we only followed family caregivers for one month. It is difficult to initiate acceptance of the critical situation of family members suffering from heart failure in a short-term intervention. Most families tried to provide their best care to maximize the patients’ health. They participated in this self-paid telehealth care in order to alter this complex situation. Therefore, the families still cannot accept or admit that this event cannot be changed, and they also cannot give up any hope and expectations in the situation. We believe that families need a long time to adapt to the patients’ life-threatening condition.
The Feetham Family Function Survey (FFFS) is appropriate to measure the relationships between family members and the integration of family members within broader social
networks and the community (Schumacher & Meleis, 1994). The total score of family function measured by the FFFS was significantly increased after participating in the
telehealth care group after one-month compared to the group that received only discharge planning. In fact, the relationships between family members were not significantly better in the experimental group compared to the comparison group. It is thought that this is due to telehealth care offering an outside agent to interact with family caregivers by daily
communication and enhance family member contact within social networks and the
community. Telehealth care could improve social interactions, but not for the relationships inside the family. Although the relationships between the family and social networks are important, telehealth care only contacts the primary family caregiver, not the whole family. Improving relationships inside the family members is also necessary for family members suffering from a critical health condition. Based on the suggestion of Wade et al. (2004) that most families prefer face-to-face meetings compared to internet-based meetings, we suggest face-to-face interviews or meetings with the family to discover individual family problems or conflicts between family members (Wade et al., 2004).
This study adapted Meleis’s transition theory for developing a nurse-led transitional care to help family caregivers of heart failure patients to successful passed through the critical transition form hospital to home. The advantages of application Meleis’s transitional theory are 1) to emphasise the temporal change of patient and their families in situational change process; 2) that individuals required the new knowledge and behaviours and change in the new social context during the transition process; 3) that providing three outcome indicators
(subjective well-being, role mastery, and well-being of relationships) to define the successful transition. However, it is not clear how the knowledge, attitude, and caring behaviours affect the transitional process.
The limitations of this study included: 1) family participation in self-paid telehealth care may be influenced by the economic situation; 2) the process indicators as well as the family caregiver’s perceptions, expectations, role engagement, knowledge and skills of caring for patients were not integrated into this study; 3) families were not randomly assigned into groups; 4) the nursing researcher collecting data was not blinded; and 5) although the first 30 days after discharge are a critical stage, long-term follow-up is necessary in the future. A selection bias caused by a lack of randomisation limits the generalisability of these findings. Further studies should be designed to explore the factors (i.e., economic status, knowledge and skills of family) that may affect family caregivers’ perceptions, cognition, resiliency and caring ability. Collecting data from multiple family members is also suggested in the further study designs in order to analyze the patient-caregivers relationship. Prospective longitudinal cohorts should be examined for the effects on health outcomes and medical expenditures. Further rigorous sampling strategies from multiple sites could be conducted to recruit larger samples.
5. Conclusion
telehealth care and discharge planning could help family caregiver’s successful transition in three outcome indicators--decreased family caregiver burden, increased stress mastery and improved family function in family caregivers of patients with heart failure one month after discharge compared to those receiving traditional discharge planning only. However,
caregivers’ acceptance of the patient’s critical condition, and the relationship between family and family members did not significantly improve in the telehealth care group at the one-month follow-up. The advanced technology of telehealth care not only monitors the physical condition of patients with heart failure during the critical transition from discharge to home, but also improves the telenursing specialist-family caregiver partnership to help, support and empower family caregivers to achieve a successful transition. Telehealth care is not limited to remote monitoring using advanced high technology devices to examine physiological
parameters; the nurses play a critical role as well. Telenursing specialists should include families into their practice with the concepts of providing transitional care to help patients and families successful cross the critical transition stage.
6. Implications for practice and policy
Integrated telehealth care combining with discharge planning provides better nurse-led intervention for family caregivers and better care of the family as a unit. Chronic disease is not only a personal event; it is a critical family event. Providing discharge planning to heart failure patients and their families might improve patient self-care and reduce readmission
rates. Telemedical monitoring in chronic heart failure might reduce total mortality as well as the number and duration of hospital admissions for worsening heart failure. More integrative transitional care model should be developed, including discharge planning, telemedical monitoring and holistic nursing care.
Although the monthly cost of telehealth care is not too expensive, a discussion of reimbursement from health insurance companies should be included. The results of this study suggest nurse-led nursing care with advanced high technology systems could be used in more hospitals with government support. This role of telenursing specialist should be established by more studies in the future.
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