- Email: [email protected]
Caregiver coaching program effect: Reducing heart failure patient rehospitalizations and improving caregiver outcomes among African Americans
Heart & Lung 44 (2015) 466e473
Contents lists available at ScienceDirect
Heart & Lung journal homepage: www.heartandlung.org
Care of Patients With Heart Disease
Caregiver coaching program effect: Reducing heart failure patient rehospitalizations and improving caregiver outcomes among African Americans Ubolrat Piamjariyakul, PhD, RN a, *, Marilyn Werkowitch, BSN, RN a, Jo Wick, PhD b, Christy Russell, RN, ARNP c, James L. Vacek, MD, MS c, Carol E. Smith, PhD, RN, FAAN d a
University of Kansas Medical Center, School of Nursing, 3901 Rainbow Boulevard, Mail Stop 4043, Kansas City, KS 66160-7502, USA University of Kansas Medical Center, Department of Biostatistics, USA c University of Kansas Hospital, Mid America Cardiology, USA d University of Kansas Medical Center, School of Nursing, Preventive Medicine and Public Health, USA b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 11 February 2015 Received in revised form 28 July 2015 Accepted 31 July 2015 Available online 22 August 2015
Objectives: (1) Test whether FamHFcare intervention could reduce patients’ heart failure (HF)-related rehospitalizations and improve family caregiver outcomes; (2) calculate effect size on caregiver outcomes; and (3) evaluate the FamHFcare. Background: Few interventions target family caregivers for HF home care. Methods: This study was a mixed method design with stratification and random assignment of 20 African American HF patient/caregiver dyads. Descriptive, univariate parametric/non-parametric, and post-hoc analyses were used. Results: At 6 months, compared to standard care, the intervention group had significantly fewer HF rehospitalizations (MW z ¼ 1.8, p ¼ 0.03), while caregiver confidence (MW z ¼ 2.8, p ¼ 0.003) and social support scores (MW z ¼ 2.4, p ¼ 0.01) were significantly higher, and caregiver depression (MW z ¼ 2.4, p ¼ 0.01) were significantly lower. Caregivers rated the FamHFcare as helpful (M ¼ 46.8 4.1). Conclusions: The FamHFcare intervention was associated with fewer HF patient rehospitalizations and improved caregiver outcomes. Ó 2015 Elsevier Inc. All rights reserved.
Keywords: Culturally-sensitive intervention Heart failure Caregivers Rehospitalizations African Americans Ethnic minorities
Introduction Heart failure (HF) is a devastating disease that affects approximately 5 million Americans and it is projected that there will be a 23% increase in prevalence by 2030.1 HF is one of the most expensive illnesses for our society, costing over $31 million annually.2 Compared to the majority group, African Americans are disproportionately affected by HF due to unique biological factors and social determinants of health such as higher prevalence of HF at younger ages of hypertension, diabetes and frequent delays in
Source of funding and conflict of interest: This work was supported by an award from the Kansas City Life Science Institute, Blue Cross Blue Shield, Kansas City, Kansas. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Kansas City Life Science Institute, Blue Cross Blue Shield. Authors have reported no conflicts of interest. * Corresponding author. E-mail address: [email protected] (U. Piamjariyakul). 0147-9563/$ e see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.hrtlng.2015.07.007
access to treatment,3e5 resulting in greater depression,6 mortality,7,8 severe complications and rehospitalizations.9,10 National guidelines consider the involvement of family member caregivers to be possibly the most effective but least used intervention,11,12 yet few interventions target family caregivers and do not address caregiver burden or preparedness for home care.13e16 Meta-analyses and clinical management reviews also demonstrate that few HF intervention studies are culturally sensitive and do not guide HF home management strategies.17,18 Recent reviews have found most HF interventions are resource intensive, do not include caregivers and do not reduce HF patient rehospitalizations.19e21 Notably, HF rehospitalization is often related to excess dietary sodium, fluid weight gain, and poor medication adherence8; which family caregivers can help patients to avoid. Another rationale for the caregiving intervention is the negative impact of providing complex home care22; which is known to result in caregivers’ poor physical and mental health23,24 Thus it is imperative to develop interventions that use
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
467
culturally sensitive approaches that target African American caregivers.25 A culturally sensitive consideration for this intervention is that older patients and African Americans are more likely to participate in telephone coaching interactions and have access to telephones rather than computers or Internet connection.26 Thus telephones were selected for ease of access and delivery of the interventions and low cost. A PubMed search revealed that telephones are successful delivery methods for interventions.27e29 Our early coaching study, tested with 40% African Americans in the sample, established that our telephone HF home care coaching program (FamHFcare) is feasible.30 Specifically, the telephone coaching methods were highly evaluated as preferable, convenient, and without burden or difficulty and were also rated by nurses as translatable into practice. Thus this current study is based on findings from previously reported studies and updated literature reviews.31e33 The FamHFcare intervention tested in this study included four weekly telephone coaching sessions with family caregivers. Topics include: (1) motivating involvement in their home HF plan of care such as medication adherence and following fluid and sodium restrictions; (2) developing skills to manage HF daily care; (3) coaching on managing caregiver stress and burden, and seeking professional help; (4) preparing for emergencies and sensitive endof-life discussions.
caregiving burden and depression measures when compared to baseline. Effect size of these caregiver outcomes will be determined.
Purposes
Sample size and setting
The purposes of the pilot study with African Americans were to: (1) test whether a culturally-sensitive telephone coaching intervention could reduce patients’ HF-related rehospitalizations and family caregiver burden and depression, and increase family caregiver confidence, social support, and preparedness; (2) evaluate effect size of caregiver outcomes; and (3) evaluate the caregivers’ and nurses’ perceptions of the intervention.
Patients Included were adult African American patients who had HF systolic and diastolic dysfunction and ejection fractions less than 40%.39 Excluded were patients who had received or were on a waiting list for a heart transplant, or patients with terminal illness or dementia (i.e., Alzheimer’s disease). Caregivers were those designated by the HF patient as a non-paid primary person who assisted the patient on a daily basis. Family members with a disability that precluded their use of the FamHFcare materials were excluded. Both patients and family caregivers provided consent and were able to read and write in English. The sample size in this study was based on results in our previous studies detecting differences between two randomly assigned groups on patients’ breathlessness32 and HF rehospitalizations.40 For those studies using Type 1 error alpha at 0.05 and power at 0.80, 10 patients per group was needed.41 Our feasibility study also found that 10 dyads detected differences in caregivers’ confidence in HF home care.30 Further, our past results aligned with national findings that 40e60% of HF patients without interventions have a readmission for HF within 12 months.19 With such high frequencies of rehospitalizations and based on our past detection of differences, 20 dyads was determined to be sufficient to detect differences on the patients’ HF rehospitalization and caregivers’ confidence in this study. This study was conducted through an outpatient cardiology HF follow up clinic in a Midwestern medical center. Potential patients were identified prospectively by the Mid-America Cardiology nurse practitioner who reviews electronic medical records for all of their 40 cardiologists on a daily basis. The nurse practitioner then met with patients and/or family caregivers to explain the study and asked permission for our research staff to contact them for consent and enrollment in the study. Both patients and family members were invited to participate, and no dyads who were approached declined. Thus participant eligibility screening and initial contact was done by personnel who already have access to patient records and have a clinical relationship with the patients and their families, consistent with HIPAA.42 Out of approximately 120 eligible patients, the first twenty patient and family caregiver dyads contacted
Conceptual framework A coaching by health professionals framework guided the design of the culturally sensitive FamHFcare intervention. As described in detail elsewhere,30 this framework is composed of three constructs: (1) strategies of coaching (i.e., teaching, teachback,34,35 reinforcing family partnerships with professionals, and motivating caregiver involvement36 in HF home care, and seeking social support from family members or others) which are associated with intermediate and long-term outcomes; (2) intermediate outcomes (i.e., improving confidence and preparedness for HF home care); and (3) long-term outcomes (fewer patient HF rehospitalizations, and reduced caregiving burden and depression). Hypotheses and research questions The following directional hypotheses and research questions were tested: Hypothesis 1. At 6 months after intervention completion, the frequency of HF-related hospitalizations for patients of the caregivers who received the FamHFcare intervention is significantly lower than for those in the standard care group when compared to baseline. Hypothesis 2. At 6 months after intervention completion, the caregivers who received the FamHFcare intervention report significantly higher scores on caregiver confidence, preparedness for HF home care, and perceived social support, and lower
Additional research questions were: (1) Did the African American family caregivers completing the coaching program rate the program as helpful for home HF care? (2) What were the most common topics in the coaching program for which African American family caregivers need reinforcement (measured via nurse’s behavioral checklist)?
Methods Design This study used a mixed method design with stratification on the patients’ length of HF diagnosis37 and random assignment of African American HF dyads (20 patients, 20 caregivers) to the intervention or standard care groups. Length of HF diagnosis was a key characteristic that is associated with greater HF-related rehospitalizations and caregiving burden.23 Stratification on length of HF diagnosis avoided selection bias and internal validity threats in this small sample.38
468
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
agreed to participate. Each participant was assigned a code number to protect confidentiality. Procedure The procedures for the study were approved by the university medical center’s Institutional Review Board (IRB). All caregivers and patients in this study had standard HF care prescribed by the patient’s physician and the consulting cardiologist.43 Standard care includes the education and materials routinely given to all HF patients through hospital discharge planning. The standard medical and nursing clinical care in both groups was not changed for this study. However, this information is not specific to the needs of African Americans or to caregivers.44 Thus the intervention group received both standard care and the adapted FamHFcare coaching and educational materials adapted for African Americans.
comprehensive but easy-to-follow daily HF home care routines. Coaching was given on dyspnea/breathlessness32 symptom progression as well as physical activity instructions per physicians and national guidelines. Visuals were provided for assessing ankle edema, abdominal swelling, and cyanosis in darker skinned individuals.59 Low-income families needing assistance with medications, transportation, and monthly utility bills were referred to our social workers.60,61 Also content related to end-of-life care and advanced directive forms was provided.55 At the end of each session, the caregivers were asked to describe what they learned. The nurse used an AHA home HF care checklist to list the skills learned and identify areas needing reinforcement.62 This teach-back technique monitored caregiver understanding of low-sodium diets, HF and depression symptoms reporting, advanced directives, and medication schedule.63,64 Data collection
Culturally-sensitive coaching intervention The FamHFcare intervention strategies were adapted to the known cultural strengths of African American caregivers using the coaching framework as a guide. These strengths were based on African American preferences, customs, traditions, diet tendencies, and social and community support resources as found in our early qualitative studies and confirmed in the literature.45,46 Cultural sensitivity is defined by the American Medical Association policies as “the knowledge and interpersonal skills that allow providers to understand, appreciate, and work with individuals from cultures other than their own.”47 It involves an awareness and acceptance of cultural differences; as our experienced nurse interventionist conveyed in a prior study. Also a known cultural strength of African Americans is having multiple family members involved in caregiving. Thus our intervention nurse discussed how to coordinate resources and support among all caregivers for housekeeping, grocery shopping, and transportation in order to help relieve the primary caregiver’s fatigue.48 Because many African Americans are reluctant to contact physicians,49 the nurse helped patients and caregivers practice monitoring and timely reporting of HF symptoms and comorbid conditions (i.e., hypertension, diabetes, COPD).50 The nurse emphasized information needed by physicians and guided families on how to talk to physicians or to another professional when changes arose in the patient’s condition. FamHFcare includes 4 weeks of post-hospital coaching via telephone on specific HF home care skills using a teach-back strategies. FamHFcare aligns with all ACCF/AHA clinical guidelinebased instructions for daily sodium/fluid restrictions, medication adherence, and symptom monitoring and reporting. Prior to the first telephone session, each family received the coaching program materials by mail: (1) two AHA home caregiving guides (symptoms checklist and staying healthy guidelines for caregivers)51; (2) a list of local support organizations; (3) the national award winning book Comfort of HomeÒ for Chronic Heart Failure: A Guide for Caregivers52; (4) low-sodium booklet,53 and (5) a plastic daily pill organizer. Intervention protocols ensured consistency and fidelity of the intervention delivery.54 Telephone coaching sessions The nurse interventionist engaged each dyad in four weekly FamHFcare coaching sessions scheduled at their convenience.55 Each telephone session lasted from 60 to 90 min; depending on caregivers’ questions and need for reinforcement.30,56 For example, after verifying the prescribed HF patient diet, the nurse facilitated discussions on ways to find low-cost low-sodium foods and used recipes with low fat, salt, and calories that were acceptable.57,58 The nurse interventionist also assisted caregivers in setting up
Data were collected from all caregivers in both the intervention and standard care groups at baseline and 6 months. The data were gathered on questionnaires that were completed in 20e30 min. To preclude any diffusion of treatment across participants, the research nurse conducting the telephone intervention was different from the nurses collecting the data. Data collectors were trained research nurses who were blinded to random assignment. Patient rehospitalization data was drawn from the electronic medical record chart review. Instruments and questionnaires All the instruments and questionnaires used had established validity and reliability. Each had been used with diverse ethnic populations and with HF families. These questionnaires were easily completed over the telephone in previous studies.30 Duration of heart failure was measured by the patient’s selfreport of the first HF diagnosis and confirmed by medical record review. Patients’ HF-related hospitalization frequencies were adjudicated as HF-related through medical record review65 by a trained research nurse who used the standard coding protocols tested in the recent HF trial.66 Caregivers’ self-report chronic health conditions were obtained by interview. All chronic health conditions reported across all caregivers were tabulated. Confidence in providing HF home care was a four-item Likert-type scale (1 ¼ not confident, 4 ¼ extremely confident); higher scores indicated greater confidence.67 A sample question was: “Generally, how confident are you that you can help the patient recognize and relieve HF symptoms?” Cronbach’s reliability score (a) in this study was 0.87. Preparedness in providing HF home care was a one-item Likerttype scale (1 ¼ not at all, 4 ¼ very well prepared); higher scores indicating caregivers felt better prepared. This single item was used to reduce questionnaire burden.68 The question was: “How well prepared do you think you are now to handle the daily heart failure home care?” Perceived social support was also a one-item Likert-type scale (1 ¼ not at all, 5 ¼ as much as I wanted); a higher score indicated more perceived support. The question was: “In the past 4 weeks, if you needed someone to listen to you, was someone there for you?”69 Caregiving burden of HF home care management was a 17-item five-point Likert-type scale in which higher scores indicated more burden or difficulty in providing caregiving. This 17-item scale (a ¼ 0.98) was modified by Bakas et al.70,71 Response options were: 1 ¼ providing caregiving but the task was not difficult
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
469
Table 1 Baseline demographic data of family caregivers. Demographic
Total sample (N ¼ 20)
Intervention (n ¼ 10)
Standard care (n ¼ 10)
c2/t statistics (p value)
Age
61.4 (10.0) years (range 40e76) 17 (85%)
65.1 (8.0) years (range 51e76) 8 (80%)
57.3 (10.9) years (range 40e76) 9 (90%)
t ¼ 1.79 (0.1) c2 ¼ 0.39 (1.0) N/A
8 12 14 12
3 7 6 6
5 5 8 6
Female (n/%) Years of education a High school or lower a Vocational, college or more Married Currently employed a
(40%) (60%) (70%) (60%)
(30%) (70%) (60%) (60%)
(50%) (50%) (80%) (60%)
c2 ¼ 0.95 (0.6) c2 ¼ 0 (1.0)
Crosstab comparison (N/A), could not be conducted due to less than 5 in one of the cells.
to 5 ¼ extremely difficult. Option “N/A ¼ not applicable” was provided and selected by caregivers who did not provide specific caregiving task. Depression was measured by a 10-item four-point Likert-type scale, the Center for Epidemiologic Studies Depression Scale (CES-D).72 A sample question was: “During the past 4 weeks, how often have you felt depressed?” Response options were: 0 ¼ less than 1 day of the week, 3 ¼ 5e7 days of the week. A higher score indicated greater depression (a ¼ 0.85). Helpfulness rating. Following each coaching session, each caregiver rated the helpfulness of each intervention component on an 11-item Likert type scale. Response options were: 1 ¼ not helpful, 5 ¼ very helpful. The possible range of score was 11e55. Sample questions were: “How helpful was the information for caring for yourself?” “How helpful was the information on developing routine home HF care?” Teach-back checklist. As reinforcement for cementing the FamHFcare information, each caregiver was asked to “teach-back” to the nurse what was learned in each session. This teach-back strategy allowed the nurse to validate the caregiver’s knowledge and identify topics requiring reinforcement. This method addresses low health literacy, a major barrier in managing chronic illness for older adults and for African Americans.34,63 Teach-back checklist that nurses rated as needing reinforcement were tabulated. The percent of teach-back topics requiring reinforcement was calculated across the four telephone sessions.
Data analysis Descriptive statistics were used to summarize the sample demographics, chronic health conditions, and FamHFcare intervention evaluation data. Percent relative change from baseline to 6-month outcome measures was calculated [(6-month score minus baseline score) divided by baseline score multiplied by 100].73 Relative change scores take into account the degree of observed change relative to the ‘severity’ at baseline. And due to the lack of normal distribution in the outcomes data and small sample size, one-tailed nonparametric methods were used
to test the a priori directional hypotheses.74 Specifically, the ManneWhitney (MW) test was used to detect a significant difference in relative changes in rehospitalizations between groups (Hypothesis 1) and in questionnaire measures (Hypothesis 2). On the burden sale scoring, many selections of “not applicable” with a score of “zero” for caregiving task were noted. Thus, each item was recoded in a post-hoc analysis to identify whether the level of difficulty rated by the caregiver undertaking each task/ activity at 6-month follow-up had decreased (1), increased (1), or not changed (0) as compared to baseline. Crosstabs and Chi-square test on these relative change scores were calculated to control for caregivers who did not provide specific caregiving task. Cohen’s d was calculated to detect the effect size which is a determinant of the magnitude of the difference between two groups (“small”, d ¼ 0.2; “medium”, d ¼ 0.5; and “large”, d ¼ 0.8).41 SPSS version 22 was used for all analyses.
Results Demographic No statistically significant group differences in baseline demographics were found for caregivers (Table 1) or patients (Table 2). All participants were African Americans. Caregivers were spouses (65%, n ¼ 13) of these patients or were other family members (35%, n ¼ 7), i.e., sister, parent, daughter or granddaughter. Of 20 dyads, 15 (75%) lived in the same household, while 25% (5 dyads) lived separately. Twelve caregivers (60%) were currently employed. Seven caregivers in the intervention group had vocational or higher education versus 5 in the standard care group. Caregivers reported their chronic health conditions: hypertension (n ¼ 11), myocardial infarction or cardiovascular disease (n ¼ 4), diabetes mellitus (n ¼ 4), osteoarthritis/pain (n ¼ 4), and one caregiver each reported the conditions of depression, thyroid problems, asthma, and HIV. The majority of patients were male (60%). On average, patients had been diagnosed with HF for ¼ 8.7 years (SD ¼ 6.8, range 1e25
Table 2 Baseline demographic data of patients with HF (n ¼ 20). Demographics
Total sample (N ¼ 20)
Intervention (n ¼ 10)
Standard care (n ¼ 10)
c2/t statistics (p value)
Age (mean, SD)a
62.3 (13.5) years (Range 40 to >89) 8 (40%)
60.8 (14.5) years (Range 46 to >89) 4 (40%)
63.7 (13.1) years (Range 40e81) 4 (40%)
11 (55%) 8.7 (6.8) Range 1e25 years
6 (60%) 8.8 (7.7) Range 1e25 years
5 (50%) 8.6 (6.1) Range 3e20 years
t ¼ 0.47 (0.6) c2 ¼ 0 (1.0) c2 ¼ 0.2 (1.0) t ¼ 0.07 (0.9)
Female (n, %) Married Duration of HF diagnosis a
Per the Health Insurance Portability and Accountability Act (HIPAA), one patient’s age was reported as “over 89” to ensure patient confidentiality.
470
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
years). There was no statistically significant difference between groups on length of HF diagnosis. Per the Health Insurance Portability and Accountability Act (HIPAA), one patient’s age was reported as “over 89” to ensure patient confidentiality. Based on national clinical trials reports and HF registry comparisons,75 FamHFcare included a representative sample of patients of similar age, gender, length of HF and multiple rehospitalizations for HF. Similarity in comparison to the few family caregiver studies reported indicate this sample of caregivers had similar relationships to patients, caregiving responsibilities and lack of access to HF home care information.23,70 During the 6 months of the study, one patient in the standard care group died in the hospital of HF. Two family caregivers in the intervention group withdrew after completing and evaluating the first two intervention sessions. One was too ill to continue, and the other had a busy work schedule. Thus across the four intervention sessions, 38 of 40 caregiver evaluations (95%) were completed. Case-wise deletion for questionnaire analysis was used, resulting in comparisons between 8 intervention and 9 standard care caregivers. Hypothesis 1. Compared to standard care, at 6 months post intervention, intervention group patients had a significant percent reduction in rehospitalizations (MeW z ¼ 1.8, p ¼ 0.03; onetailed). Only one intervention patient had one HF-related rehospitalization, and that readmission was right at the 6 months date. This is a 30% reduction from the previous 6 months. In the standard care group, there were four HF rehospitalizations during the 6 months from baseline, which was 10% higher compared to the previous 6 months. Hypothesis 2. Compared to standard care, the intervention caregivers showed significant improvement on the confidence scale (MeW z ¼ 2.8, p ¼ 0.003), indicating large effect size (d ¼ 1.5), see Table 3. In addition, they had significantly higher perceived social support (having someone to listen/talk to when needed) (MeW z ¼ 2.4, p ¼ 0.01) with large effect size (d ¼ 0.9) and significantly lower depression scores on the CES-D scale (Me W z ¼ 2.4, p ¼ 0.01) with large effect size (d ¼ 1.0). No significant difference was found in preparedness or in the relative change in the total burden scale between the two groups. There was a medium effect size on preparedness for HF home care (d ¼ 0.7) and the total caregiving burden (d ¼ 0.5) detected. In the post-hoc analyses, there was decreased burden among intervention group caregivers for: (1) providing emotional support or “being there for the patient” (c2 ¼ 8.1, p < 0.05); and (2) watching for and reporting the patients’ symptoms or “monitoring the patient progress” (c2 ¼ 8.0, p < 0.05). There were no other differences between groups on other items.
Evaluation of FamHFcare Caregivers in the intervention group completed an evaluation following each of four weekly telephone sessions on that week’s topics. Two intervention caregivers who withdrew had completed and evaluated the first two intervention sessions. Thus, across the four sessions we collected 38 of 40 evaluations. Mean score of the 11 items across 4 sessions was 46.8 (SD ¼ 4.1; range 42e52). Over 90% of caregivers rated themselves as comfortable during the telephone discussions. Additional research question 1 When asked how the FamHFcare was helpful, caregivers reported they felt more able to seek help from others (i.e., their church, friends, or other family members) to relieve their caregiving burden. At the end of session 4, eight of 10 families (two withdrew after session 2) indicated that they had used the caregiver book, low-sodium book and materials provided. Notably, four families reported using the Internet sites (i.e., Family Caregiver Alliance) that are recommended in the FamHFcare materials and they described themselves as “having a better understanding and reporting the progression of HF symptoms to health professionals.” They were able to “schedule patients’ medications,” “take a walk with patients,” and “take rest” as they need. Additional research question 2 What were the most common topics in the coaching program for which African American family caregivers need reinforcement? The data checklist tabulations on FamHFcare caregivers’ teach-back topics indicated that there was a 45% improvement in HF knowledge, symptom monitoring and reporting from week 1 to week 4. These improvement data indicated that caregivers met many caregiving challenges but also many where needing reinforcement of these task challenges. Specifically, caregivers’ responses indicated they had learned how to better manage caregiving fatigue, controlling salt intake when eating out, communicating with the patient, and maintaining patients’ daily activities and medication schedules. At baseline, none of the caregivers in the intervention group had discussed the patient’s advanced care planning or endof-life care. At the end of week 4, four caregivers (40%) reported that they were uneasy during the discussion of end-of-life care. Common responses were: “I don’t know exactly about doing any forms e we’ve talked and we know what each other want, so does our daughter;” “We don’t have any legal documents . .” During the same discussions of end-of-life care, the nurses noted some caregivers had discomfort and needed therapeutically comfort messages during those conversations. Only half of the intervention caregivers said the patient has advanced directives.
Table 3 Comparison of mean percent relative change between baseline and 6-month post intervention for the intervention and standard care groups (one-tailed). Variables
Confidence Depression (CES-D) Social support (someone to listen) Preparedness on HF home care Caregiving burden a
Cohen’s da
Standard care M (SD) Minemax
Intervention M (SD) Minemax Baseline
6 months
12 (1.4) (8e12) 7.0 (5.4) (0e15) 4.6 (1.0) (2e5) 2.6 (1.0) (1e4) 23.3 (17.9) (5e71)
16 (2.7) (8e16) 1.3 (2.6) (0e7) 4.9 (0.4) (4e5) 3.1 (0.6) (2e4) 22.3 (9.6) (12e42)
Change (%) 38.8 (40.5) 88.8 (24.8) 15.6 (35.2) 48.9 (80.2) 58.7 (12.7)
Baseline
6 months
Change (%)
13.8 (2.3) (10e16) 11.2 (3.9) (7e17) 4.8 (0.4) (4e5) 3.6 (0.7) (2e4) 18.5 (7.1) (12e34)
12.8 (2.3) (9e16) 7.7 (8.5) (0e20) 4.1 (1.1) (2e5) 3.4 (0.9) (2e4) 20.8 (8.3) (14e42)
4.0 (2.3)
MW z
p
Effect size 1.5
2.8
41.9 (58.7)
1.0
2.4
0.01
39.3 (68.6)
0.9
2.4
0.01
4.2 (47.8)
0.7
1.1
0.51
12.0 (29.7)
0.5
0.1
0.96
Cohen’s d ¼ M1 M2/spooled, where spooled ¼ O[(s 12 þ s 22)/2], which “small,” d ¼ 0.2; “medium,” d ¼ 0.5; and “large,” d ¼ 0.8.
0.003
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
Discussion The results of this pilot study align with a recent review28,29 indicating that patients who participated in interventions, such as individual telephone contacts with a professional, had significantly fewer HF rehospitalizations than patients who received standard care. Consistent with literature, 55% African American caregivers reported hypertension, and 20% reported other chronic health conditions. Therefore in the FamHFcare intervention, we encouraged caregivers to monitor both the patient’s HF home care and their own health and practice ways to report their chronic health conditions and symptoms to their health care provider. Aligned with early studies, the coaching framework strategies were shown to reach intermediate outcomes (i.e., improving caregivers’ confidence for HF home care)30,76 as well as to achieve long-term outcomes of reducing caregiver depression, and HF patient rehospitalizations.40 In addition, caregivers also reported that they were able to reach out for help from friends and neighbors77; this is a strength among African Americans.78 The information related to end-of-life HF care was introduced in the later FamHFcare sessions, after the research nurse developed rapport with the caregivers. This topic was identified by caregivers (n ¼ 4) as difficult to discuss, and only 5 had living wills or advance directives. Our findings align with the literature showing that African Americans are hesitant to discuss and complete legal forms for end-of-life care.79 Our social support item was limited to emotional support, thus we encourage and will undertake future research using instruments measuring multiple dimensions of social support qualitatively and quantitatively.80,81 Although our FamHFcare visual materials compensate for elders’ potential reading difficulties and health literacy, the impact of educational background could impact the study outcomes. Also, the non-significant difference in total burden scale following the intervention, which may be related to this pilot sample size, responses on “not applicable/not providing specific caregiving task,” and short-term (6-month) follow-up. The posthocanalysis on individual item responses needs careful interpretation. The significant differences on 2 items using post-hoc analyses do not represent the improvement in caregiving burden as a whole, which could lead to validity threat.82 Rather, the posthoc recoding and results identify two areas of caregivers’ improvement in the difficult of those caregiving tasks. In the future use of the intervention, this identification can be used to individualize the intervention to help each caregiver reduce the specific burdens they report. Implications for future research Notably, the effect size calculations in this pilot study can be used in power analysis for a larger longitudinal study. In addition, to empower policy advocates for HF patients and their caregivers, future researchers will need to conduct studies that employ large random samples and make comparisons to other studies of HF patients and caregiver dyads to non-caregiving dyads.83 Implications for practice Subgroup analyses based on the challenges of various educational background and levels of caregiving difficulty could be conducted to produce clinically actionable results and increase the generalizability. During the early stage of the coaching, nurses could begin guiding both the patient and family caregiver to think over, discuss, and accept the patient’s disease trajectory and to
471
complete forms for their end-of-life preferences.84 Nurses and health care professionals should initiate discussion about advanced heart failure care at the early stage of heart failure.56 Conclusion Results of this pilot study showed that the FamHFcare intervention was associated with fewer HF patient rehospitalizations and improved caregiver outcomes. These findings warrant further testing in a larger study to determine if this culturally-sensitive telephone coaching intervention reduces patients’ HF-related rehospitalizations and improves caregivers’ preparedness for HF home care management. As HF grows in prevalence on a national and international basis, culturally-sensitive interventions will be necessary to optimize management strategies in increasingly diverse populations. Acknowledgment The authors extend their appreciation to all patients and their family caregivers who took part in this study. We acknowledge Lois Moushey, RN, MSN, and Briana Hotchkiss, BSN, who helped review and evaluate culturally-sensitive educational materials and our intervention program. References 1. Mozaffarian D, Benjamin EJ, Go AS, et al, American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Circulation. 2015;131:e29e 322. 2. Heidenreich PA, Albert NM, Allen LA, et al, American Heart Association Advocacy Coordinating Committee, Council on Arteriosclerosis, Thrombosis and Vascular Biology, Council on Cardiovascular Radiology and Intervention, Council on Clinical Cardiology, Council on Epidemiology and Prevention, Stroke Council. Forecasting the impact of heart failure in the United States: a policy statement from the American Heart Association. Circ Heart Fail. 2013;6: 606e619. 3. Lam C, Smeltzer SC. Patterns of symptom recognition, interpretation, and response in heart failure patients: an integrative review. J Cardiovasc Nurs. 2013;28:348e359. 4. Husaini BA, Mensah GA, Sawyer D, et al. Race, sex, and age differences in heart failure-related hospitalizations in a southern state: Implications for prevention. Circ Heart Fail. 2011;4:161e169. 5. Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. In: Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press; 2003. 6. Evangelista LS, Ter-Galstanyan A, Moughrabi S, Moser DK. Anxiety and depression in ethnic minorities with chronic heart failure. J Card Fail. 2009;15: 572e579. 7. Thomas KL, Honeycutt E, Shaw LK, Peterson ED. Racial differences in long-term survival among patients with coronary artery disease. Am Heart J. 2010;160: 744e751. 8. Sharma A, Colvin-Adams M, Yancy CW. Heart failure in African Americans: disparities can be overcome. Cleve Clin J Med. 2014;81:301e311. 9. Shen JJ, Washington EL, Chung K, Bell R. Factors underlying racial disparities in hospital care of congestive heart failure. Ethn Dis. 2007;17:206e213. 10. Wu JR, Lennie TA, De Jong MJ, et al. Medication adherence is a mediator of the relationship between ethnicity and event-free survival in patients with heart failure. J Card Fail. 2010;16:142e149. 11. Yancy CW, Jessup M, Bozkurt B, et al, American College of Cardiology Foundation, American Heart Association Task Force on Practice Guidelines. 2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. J Am Coll Cardiol. 2013;62:e147e239. 12. Spector WD, Cohen JW, Pesis-Katz I. Home care before and after the Balanced Budget Act of 1997: shifts in financing and services. Gerontologist. 2004;44: 39e47. 13. Clark AM, Freydberg CN, McAlister FA, Tsuyuki RT, Armstrong PW, Strain LA. Patient and informal caregivers’ knowledge of heart failure: necessary but insufficient for effective self-care. Eur J Heart Fail. 2009;11:617e621. 14. Dunbar SB, Clark PC, Quinn C, Gary RA, Kaslow NJ. Family influences on heart failure self- care and outcomes. J Cardiovasc Nurs. 2008;23:258e265. 15. Molloy GJ, Johnston DW, Witham MD. Family caregiving and congestive heart failure. Review and analysis. Eur J Heart Fail. 2005;7:592e603. 16. Collins LG, Swartz K. Caregiver care. Am Fam Physician. 2011;83:1309e1317.
472
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
17. American Heart Association. Heart Failure Patients and Caregivers Have Unmet Care Needs. Available at: http://americanheart.mediaroom.com/index.php? s¼43&item¼716; 2010. Accessed 01.03.14. 18. Harkness K, Spaling MA, Currie K, Strachan PH, Clark AM. A systematic review of patient heart failure self-care strategies. J Cardiovasc Nurs. 2015;30:121e 135. 19. Gheorghiade M, Vaduganathan M, Fonarow GC, Bonow RO. Rehospitalization for heart failure: problems and perspectives. J Am Coll Cardiol. 2013;61:391e403. 20. Wakefield BJ, Boren SA, Groves PS, Conn VS. Heart failure care management programs: a review of study interventions and meta-analysis of outcomes. J Cardiovasc Nurs. 2013;28:8e19. 21. Giamouzis G, Kalogeropoulos A, Georgiopoulou V, et al. Hospitalization epidemic in patients with heart failure: risk factors, risk prediction, knowledge gaps, and future directions. J Card Fail. 2011;17:54e75. 22. Pressler SJ, Gradua-Pizlo I, Chubinski SD, Smith G, Wheeler S, Wu J, Sloan R. Family caregiver outcomes in heart failure. Am J Crit Care. 2009;18:149e159. 23. Pressler SJ, Gradus-Pizlo I, Chubinski SD, et al. Family caregivers of patients with heart failure: a longitudinal study. J Cardiovasc Nurs. 2013;28:417e428. 24. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282:2215e2219. 25. Cuyjet AB, Akinboboye O. Acute heart failure in the African American patient. J Card Fail. 2014;20:533e540. 26. Mitchell JA, Thompson HS, Watkins DC, Shires D, Modlin Jr CS. Disparities in health-related Internet use among African American men. Prev Chronic Dis. 2014;11:E43. 27. Nundy S, Razi RR, Dick JJ, et al. A text messaging intervention to improve heart failure self-management after hospital discharge in a largely African-American population: before-after study. J Med Internet Res. 2013;15:e53. http:// dx.doi.org/10.2196/jmir.2317. 28. Sochalski J, Jaarsma T, Krumholz HM, et al. What works in chronic care management: the case of heart failure. Health Aff (Millwood). 2009;28:179e189. 29. Clark RA, Inglis SC, McAlister FA, Cleland JG, Stewart S. Telemonitoring or structured telephone support programmes for patients with chronic heart failure: systematic review and meta-analysis. BMJ. 2007;334:942. 30. Piamjariyakul U, Russell C, Smith CE, Werkowitch M, Elyachar A. The feasibility of a telephone coaching program on heart failure home management for family caregivers. Heart Lung. 2013;42:32e39. 31. Piamjariyakul U, Smith CE, Werkowitch M, Elyachar A. Part 2: enhancing heart failure home management: Integrated evidence for a new family caregiver educational plan. Appl Nurs Res. 2012;25:246e250. 32. Wongpiriyayothar A, Piamjariyakul U, Williams PD. Effects of coaching using telephone on dyspnea and physical functioning among persons with chronic heart failure. Appl Nurs Res. 2011;24:e59e66. 33. Piamjariyakul U, Smith CE, Werkowitch M, Elyachar A. Part I: heart failure home management: patients, multidisciplinary health care professionals and family caregivers’ perspectives. Appl Nurs Res. 2012;25:239e245. 34. Peter D, Robinson P, Jordan M, Lawrence S, Casey K, Salas-Lopez D. Reducing readmissions using teach-back: enhancing patient and family education. J Nurs Adm. 2015;45:35e42. 35. National Institutes of Health. Turning discovery into health. Clear Communication: A NIH health literacy initiative. http://www.nih.gov/clearcommuni cation/; Accessed 15.03.14. 36. Smith CE, Kleinbeck SVM, Boyle D, et al. Family caregivers’ motives for helping scale derived from motivation-to-help theory. J Nurs Meas. 2001;9:239e257. 37. Lewallen S, Courtright, P. Epidemiology in practice: case-control studies. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1706071/; Accessed 01.04.15. 38. Polit DF, Beck CT. Nursing Research: Principles and Methods. 7th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2004. 39. Swedberg K, Cleland J, Dargie H, et al, Grupo de Trabajo de Diagnóstico y Tratamiento de la Insuficiencia Cardíaca Crónica de la Sociedad Europea de Cardiología; Comité de la ESC para la elaboración de las Guías de Práctica Clínica. Guidelines for the diagnosis and treatment of chronic heart failure: executive summary (update 2005). The Task Force for the Diagnosis and Treatment of Chronic Heart Failure of the European Society of Cardiology. Eur Heart J. 2005;26:1115e1140. 40. Piamjariyakul U, Smith C, Russell C. Heart Failure Coaching Program Perspectives; 2012. Abstract, MNRS. 2012. 41. Cohen J. Statistical Power Analysis for the Behavioral Sciences. Hilldale, NJ: Lawrence Erlbaum Assoc.; 1987. 42. Dalton KM, Reeder KM, Blackwell K, Ellerbeck E, Smith CE. Screening and enrollment in clinical trials: essential relationships for success. Monitor. 2009;23:29e33. 43. Joint Commission. Heart failure core measure Sets. Available at: http://www. jointcommission.org/core_measure_sets.aspx; Accessed 01.04.14. 44. Mehta SK, Toto KH, Nelson LL, Drazner MH. Therapy of heart failure in African Americans: lessons from an urban public hospital. Congest Heart Fail. 2004;10: 40e43. 45. Dickson VV, McCarthy MM, Howe A, et al. Sociocultural influences on heart failure self-care among an ethnic minority black population. J Cardiovasc Nurs. 2013;28:111e118. 46. Pace R, Dawkins N, Wang B, Person S, Shikany JM. Rural African Americans’ dietary knowledge, perceptions, and behavior in relation to cardiovascular disease. Ethn Dis. 2008;18:6e12.
47. Williamson M, Harrison L. Providing culturally appropriate care: a literature review. Int J Nurs Stud. 2010;47:761e769. 48. Durant RW, Brown QL, Cherrington AL, Andreae LJ, Hardy CM, Scarinci IC. Social support among African Americans with heart failure: is there a role for community health advisors? Heart Lung. 2013;42:19e25. 49. Street RL, O’Malley KJ, Cooper LA, Haidet P. Understanding concordance in patient-physician relationships: personal and ethnic dimensions of shared identity. Ann Fam Med. 2008;6:198e205. 50. Riegel B, Dickson V, Cameron J, Bunker S, Page K, Worrall-Carter L. Symptom recognition in elders with heart failure. J Nurs Scholarsh. 2010;42:92e100. 51. American Heart Association (AHA). Getting healthy. Available at: http://www. heart.org/HEARTORG/GettingHealthy/GettingHealthy_UCM_001078_SubHome Page.jsp; Accessed 15.02.14. 52. Meyer MM, Derr P, Kendall K, Reese J. The Comfort of HomeÒ for Chronic Heart Failure: A Guide for Caregivers. Portland, Oregon: CareTrust Publications LLC; 2009. 53. Mostyn B. Pocket Guide to Low Sodium Foods. 3rd ed. Washington: InData Group. Inc; 2012. 54. Clark AM, Savard LA, Thompson DR. What is the strength of evidence for heart failure disease-management programs? J Am Coll Cardiol. 2009;54: 397e401. 55. Quinn C, Dunbar SB, Clark PC, Strickland OL. Challenges and strategies of dyad research: cardiovascular examples. Appl Nurs Res. 2010;23:e15ee20. 56. Piamjariyakul U, Myers S, Werkowitch M, Smith CE. End-of-life preferences and presence of advance directives among ethnic populations with severe chronic cardiovascular illnesses. Eur J Cardiovasc Nurs. 2014;13: 147e151. 57. Kollipara UK, Mo V, Toto KH, et al. High- sodium food choices by Southern, urban African Americans with heart failure. J Card Fail. 2006;12:144e148. 58. Frediani JK, Reilly CM, Higgins M, Clark PC, Gary RA, Dunbar SB. Quality and adequacy of dietary intake in a Southern urban heart failure population. J Cardiovasc Nurs. 2013;28:119e128. 59. Sommers MS. Color awareness: patient assessment. Available at: http://www. medscape.com/viewarticle/741045_print; Accessed 15.02.14. 60. Heisler M, Choi H, Rosen AB, et al. Hospitalization and deaths among adults with cardiovascular disease who underuse medications because of costs: a longitudinal analysis. Med Care. 2010;48:87e94. 61. Liao L, Allen LA, Whellan DJ. Economic burden of heart failure in the elderly. Pharmacoeconomics. 2008;26:447e462. 62. Zauszniewski JA. Intervention development: assessing critical parameters from the intervention recipient’s perspective. Appl Nurs Res. 2012;25:31e39. 63. Dennison CR, McEntee ML, Samuel L, et al. Adequate health literacy is associated with higher heart failure knowledge and self-care confidence in hospitalized patients. J Cardiovasc Nurs. 2011;26:359e367. 64. Williams MV, Davis T, Parker RM, Weiss BD. The role of health literacy in patient-physician communication. Fam Med. 2002;34:383e389. 65. Pfeffer MA, Swedberg K, Granger CB, et al, CHARM Investigators and Committees. Effects of candesartan on mortality and comorbidity in patients with chronic heart failure: the CHARM-Overall programme. Lancet. 2003;362: 759e766. 66. Smith CE, Piamjariyakul U, Wick JA, et al. Multidisciplinary group clinic appointments: the self-management and care of heart failure (SMAC-HF) trial. Circ Heart Fail. 2014;7:888e894. 67. Riegel B, Carlson B, Moser DK, Sebern M, Hicks FD, Roland V. Psychometric testing of the self-care of heart failure index. J Card Fail. 2004;10: 350e360. 68. Smith CE, Piamjariyakul U, Yadrich SM, Ross VM, Gajewski B, Williams AR. Complex home care: part III-economic impact on family caregiver quality of life and patient’s clinical outcomes. Nurs Econ. 2010;28:393e414. 69. Dartmouth CO-OP Charts. http://www.dartmouthcoopproject.org/coopcharts. html; Accessed 01.04.14. 70. Bakas T, Pressler SJ, Johnson E, Nauser JA, Shaneyfelt T. Family caregiving in heart failure. Nurs Res. 2006;55:180e188. 71. Carey PJ, Oberst MT, McCubbin MA, Hughes SH. Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. Oncol Nurs Forum. 1991;18:1341e1348. 72. Torres E. Psychometric properties of the Center for Epidemiologic Studies Depression Scale in African American and Black Caribbean US adults. Issues Ment Health Nurs. 2012;33:687e696. 73. American College of Physicians. Primer on Absolute vs. Relative Differences. Effective Clinical Practice. Available at: http://ecp.acponline.org/janfeb00/ primer.htm; 2000 January/February. Accessed 30.04.15. 74. Crichton NJ. Statistical considerations in design and analysis. In: Roe B, Webb C, eds. Research and Development in Clinical Nursing Practice. London: Whurr; 1998:209. 75. Kamath SA, Drazner MH, Wynne J, Fonarow GC, Yancy CW. Characteristics and outcomes in African American patients with decompensated heart failure. Arch Intern Med. 2008;168:1152e1158. 76. Smith CE, Piamjariyakul U, Dalton KM, Russell C, Wick J, Ellerbeck EF. Nurse-led multidisciplinary heart failure group clinic appointments: methods, materials and outcomes used in the clinical trial. J Cardiovasc Nurs. 2015;30:S25eS34. 77. Gallagher R, Luttik ML, Jaarsma T. Social support and self-care in heart failure. J Cardiovasc Nurs. 2011;26:439e445.
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473 78. Wu JR, Frazier SK, Rayens MK, Lennie TA, Chung ML, Moser DK. Medication adherence, social support, and event-free survival in patients with heart failure. Health Psychol. 2013;32:637e646. 79. Kini V, Kirkpatrick JN. Ethical challenges in advanced heart failure. Curr Opin Support Palliat Care. 2013;7:21e28. 80. Krause N. Chronic financial strain, social support, and depressive symptoms among older adults. Psychol Aging. 1987;2:185e192. 81. Krause N. Satisfaction with social support and self-rated health in older adults. Gerontologist. 1987;27:301e308.
473
82. Cook TD, Campbell DT. Quasi-experimentation: Design & Analysis Issues for Field Settings. Boston: Houghton Mifflin Company; 1979. 83. Pinquart M, Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18:250e267. 84. Rhodes RL, Batchelor K, Lee SC, Halm EA. Barriers to end-of-life care for African Americans from the providers’ perspective: opportunity for intervention development. Am J Hosp Palliat Care. 2015;32(2): 137e143.
Contents lists available at ScienceDirect
Heart & Lung journal homepage: www.heartandlung.org
Care of Patients With Heart Disease
Caregiver coaching program effect: Reducing heart failure patient rehospitalizations and improving caregiver outcomes among African Americans Ubolrat Piamjariyakul, PhD, RN a, *, Marilyn Werkowitch, BSN, RN a, Jo Wick, PhD b, Christy Russell, RN, ARNP c, James L. Vacek, MD, MS c, Carol E. Smith, PhD, RN, FAAN d a
University of Kansas Medical Center, School of Nursing, 3901 Rainbow Boulevard, Mail Stop 4043, Kansas City, KS 66160-7502, USA University of Kansas Medical Center, Department of Biostatistics, USA c University of Kansas Hospital, Mid America Cardiology, USA d University of Kansas Medical Center, School of Nursing, Preventive Medicine and Public Health, USA b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 11 February 2015 Received in revised form 28 July 2015 Accepted 31 July 2015 Available online 22 August 2015
Objectives: (1) Test whether FamHFcare intervention could reduce patients’ heart failure (HF)-related rehospitalizations and improve family caregiver outcomes; (2) calculate effect size on caregiver outcomes; and (3) evaluate the FamHFcare. Background: Few interventions target family caregivers for HF home care. Methods: This study was a mixed method design with stratification and random assignment of 20 African American HF patient/caregiver dyads. Descriptive, univariate parametric/non-parametric, and post-hoc analyses were used. Results: At 6 months, compared to standard care, the intervention group had significantly fewer HF rehospitalizations (MW z ¼ 1.8, p ¼ 0.03), while caregiver confidence (MW z ¼ 2.8, p ¼ 0.003) and social support scores (MW z ¼ 2.4, p ¼ 0.01) were significantly higher, and caregiver depression (MW z ¼ 2.4, p ¼ 0.01) were significantly lower. Caregivers rated the FamHFcare as helpful (M ¼ 46.8 4.1). Conclusions: The FamHFcare intervention was associated with fewer HF patient rehospitalizations and improved caregiver outcomes. Ó 2015 Elsevier Inc. All rights reserved.
Keywords: Culturally-sensitive intervention Heart failure Caregivers Rehospitalizations African Americans Ethnic minorities
Introduction Heart failure (HF) is a devastating disease that affects approximately 5 million Americans and it is projected that there will be a 23% increase in prevalence by 2030.1 HF is one of the most expensive illnesses for our society, costing over $31 million annually.2 Compared to the majority group, African Americans are disproportionately affected by HF due to unique biological factors and social determinants of health such as higher prevalence of HF at younger ages of hypertension, diabetes and frequent delays in
Source of funding and conflict of interest: This work was supported by an award from the Kansas City Life Science Institute, Blue Cross Blue Shield, Kansas City, Kansas. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Kansas City Life Science Institute, Blue Cross Blue Shield. Authors have reported no conflicts of interest. * Corresponding author. E-mail address: [email protected] (U. Piamjariyakul). 0147-9563/$ e see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.hrtlng.2015.07.007
access to treatment,3e5 resulting in greater depression,6 mortality,7,8 severe complications and rehospitalizations.9,10 National guidelines consider the involvement of family member caregivers to be possibly the most effective but least used intervention,11,12 yet few interventions target family caregivers and do not address caregiver burden or preparedness for home care.13e16 Meta-analyses and clinical management reviews also demonstrate that few HF intervention studies are culturally sensitive and do not guide HF home management strategies.17,18 Recent reviews have found most HF interventions are resource intensive, do not include caregivers and do not reduce HF patient rehospitalizations.19e21 Notably, HF rehospitalization is often related to excess dietary sodium, fluid weight gain, and poor medication adherence8; which family caregivers can help patients to avoid. Another rationale for the caregiving intervention is the negative impact of providing complex home care22; which is known to result in caregivers’ poor physical and mental health23,24 Thus it is imperative to develop interventions that use
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
467
culturally sensitive approaches that target African American caregivers.25 A culturally sensitive consideration for this intervention is that older patients and African Americans are more likely to participate in telephone coaching interactions and have access to telephones rather than computers or Internet connection.26 Thus telephones were selected for ease of access and delivery of the interventions and low cost. A PubMed search revealed that telephones are successful delivery methods for interventions.27e29 Our early coaching study, tested with 40% African Americans in the sample, established that our telephone HF home care coaching program (FamHFcare) is feasible.30 Specifically, the telephone coaching methods were highly evaluated as preferable, convenient, and without burden or difficulty and were also rated by nurses as translatable into practice. Thus this current study is based on findings from previously reported studies and updated literature reviews.31e33 The FamHFcare intervention tested in this study included four weekly telephone coaching sessions with family caregivers. Topics include: (1) motivating involvement in their home HF plan of care such as medication adherence and following fluid and sodium restrictions; (2) developing skills to manage HF daily care; (3) coaching on managing caregiver stress and burden, and seeking professional help; (4) preparing for emergencies and sensitive endof-life discussions.
caregiving burden and depression measures when compared to baseline. Effect size of these caregiver outcomes will be determined.
Purposes
Sample size and setting
The purposes of the pilot study with African Americans were to: (1) test whether a culturally-sensitive telephone coaching intervention could reduce patients’ HF-related rehospitalizations and family caregiver burden and depression, and increase family caregiver confidence, social support, and preparedness; (2) evaluate effect size of caregiver outcomes; and (3) evaluate the caregivers’ and nurses’ perceptions of the intervention.
Patients Included were adult African American patients who had HF systolic and diastolic dysfunction and ejection fractions less than 40%.39 Excluded were patients who had received or were on a waiting list for a heart transplant, or patients with terminal illness or dementia (i.e., Alzheimer’s disease). Caregivers were those designated by the HF patient as a non-paid primary person who assisted the patient on a daily basis. Family members with a disability that precluded their use of the FamHFcare materials were excluded. Both patients and family caregivers provided consent and were able to read and write in English. The sample size in this study was based on results in our previous studies detecting differences between two randomly assigned groups on patients’ breathlessness32 and HF rehospitalizations.40 For those studies using Type 1 error alpha at 0.05 and power at 0.80, 10 patients per group was needed.41 Our feasibility study also found that 10 dyads detected differences in caregivers’ confidence in HF home care.30 Further, our past results aligned with national findings that 40e60% of HF patients without interventions have a readmission for HF within 12 months.19 With such high frequencies of rehospitalizations and based on our past detection of differences, 20 dyads was determined to be sufficient to detect differences on the patients’ HF rehospitalization and caregivers’ confidence in this study. This study was conducted through an outpatient cardiology HF follow up clinic in a Midwestern medical center. Potential patients were identified prospectively by the Mid-America Cardiology nurse practitioner who reviews electronic medical records for all of their 40 cardiologists on a daily basis. The nurse practitioner then met with patients and/or family caregivers to explain the study and asked permission for our research staff to contact them for consent and enrollment in the study. Both patients and family members were invited to participate, and no dyads who were approached declined. Thus participant eligibility screening and initial contact was done by personnel who already have access to patient records and have a clinical relationship with the patients and their families, consistent with HIPAA.42 Out of approximately 120 eligible patients, the first twenty patient and family caregiver dyads contacted
Conceptual framework A coaching by health professionals framework guided the design of the culturally sensitive FamHFcare intervention. As described in detail elsewhere,30 this framework is composed of three constructs: (1) strategies of coaching (i.e., teaching, teachback,34,35 reinforcing family partnerships with professionals, and motivating caregiver involvement36 in HF home care, and seeking social support from family members or others) which are associated with intermediate and long-term outcomes; (2) intermediate outcomes (i.e., improving confidence and preparedness for HF home care); and (3) long-term outcomes (fewer patient HF rehospitalizations, and reduced caregiving burden and depression). Hypotheses and research questions The following directional hypotheses and research questions were tested: Hypothesis 1. At 6 months after intervention completion, the frequency of HF-related hospitalizations for patients of the caregivers who received the FamHFcare intervention is significantly lower than for those in the standard care group when compared to baseline. Hypothesis 2. At 6 months after intervention completion, the caregivers who received the FamHFcare intervention report significantly higher scores on caregiver confidence, preparedness for HF home care, and perceived social support, and lower
Additional research questions were: (1) Did the African American family caregivers completing the coaching program rate the program as helpful for home HF care? (2) What were the most common topics in the coaching program for which African American family caregivers need reinforcement (measured via nurse’s behavioral checklist)?
Methods Design This study used a mixed method design with stratification on the patients’ length of HF diagnosis37 and random assignment of African American HF dyads (20 patients, 20 caregivers) to the intervention or standard care groups. Length of HF diagnosis was a key characteristic that is associated with greater HF-related rehospitalizations and caregiving burden.23 Stratification on length of HF diagnosis avoided selection bias and internal validity threats in this small sample.38
468
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
agreed to participate. Each participant was assigned a code number to protect confidentiality. Procedure The procedures for the study were approved by the university medical center’s Institutional Review Board (IRB). All caregivers and patients in this study had standard HF care prescribed by the patient’s physician and the consulting cardiologist.43 Standard care includes the education and materials routinely given to all HF patients through hospital discharge planning. The standard medical and nursing clinical care in both groups was not changed for this study. However, this information is not specific to the needs of African Americans or to caregivers.44 Thus the intervention group received both standard care and the adapted FamHFcare coaching and educational materials adapted for African Americans.
comprehensive but easy-to-follow daily HF home care routines. Coaching was given on dyspnea/breathlessness32 symptom progression as well as physical activity instructions per physicians and national guidelines. Visuals were provided for assessing ankle edema, abdominal swelling, and cyanosis in darker skinned individuals.59 Low-income families needing assistance with medications, transportation, and monthly utility bills were referred to our social workers.60,61 Also content related to end-of-life care and advanced directive forms was provided.55 At the end of each session, the caregivers were asked to describe what they learned. The nurse used an AHA home HF care checklist to list the skills learned and identify areas needing reinforcement.62 This teach-back technique monitored caregiver understanding of low-sodium diets, HF and depression symptoms reporting, advanced directives, and medication schedule.63,64 Data collection
Culturally-sensitive coaching intervention The FamHFcare intervention strategies were adapted to the known cultural strengths of African American caregivers using the coaching framework as a guide. These strengths were based on African American preferences, customs, traditions, diet tendencies, and social and community support resources as found in our early qualitative studies and confirmed in the literature.45,46 Cultural sensitivity is defined by the American Medical Association policies as “the knowledge and interpersonal skills that allow providers to understand, appreciate, and work with individuals from cultures other than their own.”47 It involves an awareness and acceptance of cultural differences; as our experienced nurse interventionist conveyed in a prior study. Also a known cultural strength of African Americans is having multiple family members involved in caregiving. Thus our intervention nurse discussed how to coordinate resources and support among all caregivers for housekeeping, grocery shopping, and transportation in order to help relieve the primary caregiver’s fatigue.48 Because many African Americans are reluctant to contact physicians,49 the nurse helped patients and caregivers practice monitoring and timely reporting of HF symptoms and comorbid conditions (i.e., hypertension, diabetes, COPD).50 The nurse emphasized information needed by physicians and guided families on how to talk to physicians or to another professional when changes arose in the patient’s condition. FamHFcare includes 4 weeks of post-hospital coaching via telephone on specific HF home care skills using a teach-back strategies. FamHFcare aligns with all ACCF/AHA clinical guidelinebased instructions for daily sodium/fluid restrictions, medication adherence, and symptom monitoring and reporting. Prior to the first telephone session, each family received the coaching program materials by mail: (1) two AHA home caregiving guides (symptoms checklist and staying healthy guidelines for caregivers)51; (2) a list of local support organizations; (3) the national award winning book Comfort of HomeÒ for Chronic Heart Failure: A Guide for Caregivers52; (4) low-sodium booklet,53 and (5) a plastic daily pill organizer. Intervention protocols ensured consistency and fidelity of the intervention delivery.54 Telephone coaching sessions The nurse interventionist engaged each dyad in four weekly FamHFcare coaching sessions scheduled at their convenience.55 Each telephone session lasted from 60 to 90 min; depending on caregivers’ questions and need for reinforcement.30,56 For example, after verifying the prescribed HF patient diet, the nurse facilitated discussions on ways to find low-cost low-sodium foods and used recipes with low fat, salt, and calories that were acceptable.57,58 The nurse interventionist also assisted caregivers in setting up
Data were collected from all caregivers in both the intervention and standard care groups at baseline and 6 months. The data were gathered on questionnaires that were completed in 20e30 min. To preclude any diffusion of treatment across participants, the research nurse conducting the telephone intervention was different from the nurses collecting the data. Data collectors were trained research nurses who were blinded to random assignment. Patient rehospitalization data was drawn from the electronic medical record chart review. Instruments and questionnaires All the instruments and questionnaires used had established validity and reliability. Each had been used with diverse ethnic populations and with HF families. These questionnaires were easily completed over the telephone in previous studies.30 Duration of heart failure was measured by the patient’s selfreport of the first HF diagnosis and confirmed by medical record review. Patients’ HF-related hospitalization frequencies were adjudicated as HF-related through medical record review65 by a trained research nurse who used the standard coding protocols tested in the recent HF trial.66 Caregivers’ self-report chronic health conditions were obtained by interview. All chronic health conditions reported across all caregivers were tabulated. Confidence in providing HF home care was a four-item Likert-type scale (1 ¼ not confident, 4 ¼ extremely confident); higher scores indicated greater confidence.67 A sample question was: “Generally, how confident are you that you can help the patient recognize and relieve HF symptoms?” Cronbach’s reliability score (a) in this study was 0.87. Preparedness in providing HF home care was a one-item Likerttype scale (1 ¼ not at all, 4 ¼ very well prepared); higher scores indicating caregivers felt better prepared. This single item was used to reduce questionnaire burden.68 The question was: “How well prepared do you think you are now to handle the daily heart failure home care?” Perceived social support was also a one-item Likert-type scale (1 ¼ not at all, 5 ¼ as much as I wanted); a higher score indicated more perceived support. The question was: “In the past 4 weeks, if you needed someone to listen to you, was someone there for you?”69 Caregiving burden of HF home care management was a 17-item five-point Likert-type scale in which higher scores indicated more burden or difficulty in providing caregiving. This 17-item scale (a ¼ 0.98) was modified by Bakas et al.70,71 Response options were: 1 ¼ providing caregiving but the task was not difficult
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
469
Table 1 Baseline demographic data of family caregivers. Demographic
Total sample (N ¼ 20)
Intervention (n ¼ 10)
Standard care (n ¼ 10)
c2/t statistics (p value)
Age
61.4 (10.0) years (range 40e76) 17 (85%)
65.1 (8.0) years (range 51e76) 8 (80%)
57.3 (10.9) years (range 40e76) 9 (90%)
t ¼ 1.79 (0.1) c2 ¼ 0.39 (1.0) N/A
8 12 14 12
3 7 6 6
5 5 8 6
Female (n/%) Years of education a High school or lower a Vocational, college or more Married Currently employed a
(40%) (60%) (70%) (60%)
(30%) (70%) (60%) (60%)
(50%) (50%) (80%) (60%)
c2 ¼ 0.95 (0.6) c2 ¼ 0 (1.0)
Crosstab comparison (N/A), could not be conducted due to less than 5 in one of the cells.
to 5 ¼ extremely difficult. Option “N/A ¼ not applicable” was provided and selected by caregivers who did not provide specific caregiving task. Depression was measured by a 10-item four-point Likert-type scale, the Center for Epidemiologic Studies Depression Scale (CES-D).72 A sample question was: “During the past 4 weeks, how often have you felt depressed?” Response options were: 0 ¼ less than 1 day of the week, 3 ¼ 5e7 days of the week. A higher score indicated greater depression (a ¼ 0.85). Helpfulness rating. Following each coaching session, each caregiver rated the helpfulness of each intervention component on an 11-item Likert type scale. Response options were: 1 ¼ not helpful, 5 ¼ very helpful. The possible range of score was 11e55. Sample questions were: “How helpful was the information for caring for yourself?” “How helpful was the information on developing routine home HF care?” Teach-back checklist. As reinforcement for cementing the FamHFcare information, each caregiver was asked to “teach-back” to the nurse what was learned in each session. This teach-back strategy allowed the nurse to validate the caregiver’s knowledge and identify topics requiring reinforcement. This method addresses low health literacy, a major barrier in managing chronic illness for older adults and for African Americans.34,63 Teach-back checklist that nurses rated as needing reinforcement were tabulated. The percent of teach-back topics requiring reinforcement was calculated across the four telephone sessions.
Data analysis Descriptive statistics were used to summarize the sample demographics, chronic health conditions, and FamHFcare intervention evaluation data. Percent relative change from baseline to 6-month outcome measures was calculated [(6-month score minus baseline score) divided by baseline score multiplied by 100].73 Relative change scores take into account the degree of observed change relative to the ‘severity’ at baseline. And due to the lack of normal distribution in the outcomes data and small sample size, one-tailed nonparametric methods were used
to test the a priori directional hypotheses.74 Specifically, the ManneWhitney (MW) test was used to detect a significant difference in relative changes in rehospitalizations between groups (Hypothesis 1) and in questionnaire measures (Hypothesis 2). On the burden sale scoring, many selections of “not applicable” with a score of “zero” for caregiving task were noted. Thus, each item was recoded in a post-hoc analysis to identify whether the level of difficulty rated by the caregiver undertaking each task/ activity at 6-month follow-up had decreased (1), increased (1), or not changed (0) as compared to baseline. Crosstabs and Chi-square test on these relative change scores were calculated to control for caregivers who did not provide specific caregiving task. Cohen’s d was calculated to detect the effect size which is a determinant of the magnitude of the difference between two groups (“small”, d ¼ 0.2; “medium”, d ¼ 0.5; and “large”, d ¼ 0.8).41 SPSS version 22 was used for all analyses.
Results Demographic No statistically significant group differences in baseline demographics were found for caregivers (Table 1) or patients (Table 2). All participants were African Americans. Caregivers were spouses (65%, n ¼ 13) of these patients or were other family members (35%, n ¼ 7), i.e., sister, parent, daughter or granddaughter. Of 20 dyads, 15 (75%) lived in the same household, while 25% (5 dyads) lived separately. Twelve caregivers (60%) were currently employed. Seven caregivers in the intervention group had vocational or higher education versus 5 in the standard care group. Caregivers reported their chronic health conditions: hypertension (n ¼ 11), myocardial infarction or cardiovascular disease (n ¼ 4), diabetes mellitus (n ¼ 4), osteoarthritis/pain (n ¼ 4), and one caregiver each reported the conditions of depression, thyroid problems, asthma, and HIV. The majority of patients were male (60%). On average, patients had been diagnosed with HF for ¼ 8.7 years (SD ¼ 6.8, range 1e25
Table 2 Baseline demographic data of patients with HF (n ¼ 20). Demographics
Total sample (N ¼ 20)
Intervention (n ¼ 10)
Standard care (n ¼ 10)
c2/t statistics (p value)
Age (mean, SD)a
62.3 (13.5) years (Range 40 to >89) 8 (40%)
60.8 (14.5) years (Range 46 to >89) 4 (40%)
63.7 (13.1) years (Range 40e81) 4 (40%)
11 (55%) 8.7 (6.8) Range 1e25 years
6 (60%) 8.8 (7.7) Range 1e25 years
5 (50%) 8.6 (6.1) Range 3e20 years
t ¼ 0.47 (0.6) c2 ¼ 0 (1.0) c2 ¼ 0.2 (1.0) t ¼ 0.07 (0.9)
Female (n, %) Married Duration of HF diagnosis a
Per the Health Insurance Portability and Accountability Act (HIPAA), one patient’s age was reported as “over 89” to ensure patient confidentiality.
470
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
years). There was no statistically significant difference between groups on length of HF diagnosis. Per the Health Insurance Portability and Accountability Act (HIPAA), one patient’s age was reported as “over 89” to ensure patient confidentiality. Based on national clinical trials reports and HF registry comparisons,75 FamHFcare included a representative sample of patients of similar age, gender, length of HF and multiple rehospitalizations for HF. Similarity in comparison to the few family caregiver studies reported indicate this sample of caregivers had similar relationships to patients, caregiving responsibilities and lack of access to HF home care information.23,70 During the 6 months of the study, one patient in the standard care group died in the hospital of HF. Two family caregivers in the intervention group withdrew after completing and evaluating the first two intervention sessions. One was too ill to continue, and the other had a busy work schedule. Thus across the four intervention sessions, 38 of 40 caregiver evaluations (95%) were completed. Case-wise deletion for questionnaire analysis was used, resulting in comparisons between 8 intervention and 9 standard care caregivers. Hypothesis 1. Compared to standard care, at 6 months post intervention, intervention group patients had a significant percent reduction in rehospitalizations (MeW z ¼ 1.8, p ¼ 0.03; onetailed). Only one intervention patient had one HF-related rehospitalization, and that readmission was right at the 6 months date. This is a 30% reduction from the previous 6 months. In the standard care group, there were four HF rehospitalizations during the 6 months from baseline, which was 10% higher compared to the previous 6 months. Hypothesis 2. Compared to standard care, the intervention caregivers showed significant improvement on the confidence scale (MeW z ¼ 2.8, p ¼ 0.003), indicating large effect size (d ¼ 1.5), see Table 3. In addition, they had significantly higher perceived social support (having someone to listen/talk to when needed) (MeW z ¼ 2.4, p ¼ 0.01) with large effect size (d ¼ 0.9) and significantly lower depression scores on the CES-D scale (Me W z ¼ 2.4, p ¼ 0.01) with large effect size (d ¼ 1.0). No significant difference was found in preparedness or in the relative change in the total burden scale between the two groups. There was a medium effect size on preparedness for HF home care (d ¼ 0.7) and the total caregiving burden (d ¼ 0.5) detected. In the post-hoc analyses, there was decreased burden among intervention group caregivers for: (1) providing emotional support or “being there for the patient” (c2 ¼ 8.1, p < 0.05); and (2) watching for and reporting the patients’ symptoms or “monitoring the patient progress” (c2 ¼ 8.0, p < 0.05). There were no other differences between groups on other items.
Evaluation of FamHFcare Caregivers in the intervention group completed an evaluation following each of four weekly telephone sessions on that week’s topics. Two intervention caregivers who withdrew had completed and evaluated the first two intervention sessions. Thus, across the four sessions we collected 38 of 40 evaluations. Mean score of the 11 items across 4 sessions was 46.8 (SD ¼ 4.1; range 42e52). Over 90% of caregivers rated themselves as comfortable during the telephone discussions. Additional research question 1 When asked how the FamHFcare was helpful, caregivers reported they felt more able to seek help from others (i.e., their church, friends, or other family members) to relieve their caregiving burden. At the end of session 4, eight of 10 families (two withdrew after session 2) indicated that they had used the caregiver book, low-sodium book and materials provided. Notably, four families reported using the Internet sites (i.e., Family Caregiver Alliance) that are recommended in the FamHFcare materials and they described themselves as “having a better understanding and reporting the progression of HF symptoms to health professionals.” They were able to “schedule patients’ medications,” “take a walk with patients,” and “take rest” as they need. Additional research question 2 What were the most common topics in the coaching program for which African American family caregivers need reinforcement? The data checklist tabulations on FamHFcare caregivers’ teach-back topics indicated that there was a 45% improvement in HF knowledge, symptom monitoring and reporting from week 1 to week 4. These improvement data indicated that caregivers met many caregiving challenges but also many where needing reinforcement of these task challenges. Specifically, caregivers’ responses indicated they had learned how to better manage caregiving fatigue, controlling salt intake when eating out, communicating with the patient, and maintaining patients’ daily activities and medication schedules. At baseline, none of the caregivers in the intervention group had discussed the patient’s advanced care planning or endof-life care. At the end of week 4, four caregivers (40%) reported that they were uneasy during the discussion of end-of-life care. Common responses were: “I don’t know exactly about doing any forms e we’ve talked and we know what each other want, so does our daughter;” “We don’t have any legal documents . .” During the same discussions of end-of-life care, the nurses noted some caregivers had discomfort and needed therapeutically comfort messages during those conversations. Only half of the intervention caregivers said the patient has advanced directives.
Table 3 Comparison of mean percent relative change between baseline and 6-month post intervention for the intervention and standard care groups (one-tailed). Variables
Confidence Depression (CES-D) Social support (someone to listen) Preparedness on HF home care Caregiving burden a
Cohen’s da
Standard care M (SD) Minemax
Intervention M (SD) Minemax Baseline
6 months
12 (1.4) (8e12) 7.0 (5.4) (0e15) 4.6 (1.0) (2e5) 2.6 (1.0) (1e4) 23.3 (17.9) (5e71)
16 (2.7) (8e16) 1.3 (2.6) (0e7) 4.9 (0.4) (4e5) 3.1 (0.6) (2e4) 22.3 (9.6) (12e42)
Change (%) 38.8 (40.5) 88.8 (24.8) 15.6 (35.2) 48.9 (80.2) 58.7 (12.7)
Baseline
6 months
Change (%)
13.8 (2.3) (10e16) 11.2 (3.9) (7e17) 4.8 (0.4) (4e5) 3.6 (0.7) (2e4) 18.5 (7.1) (12e34)
12.8 (2.3) (9e16) 7.7 (8.5) (0e20) 4.1 (1.1) (2e5) 3.4 (0.9) (2e4) 20.8 (8.3) (14e42)
4.0 (2.3)
MW z
p
Effect size 1.5
2.8
41.9 (58.7)
1.0
2.4
0.01
39.3 (68.6)
0.9
2.4
0.01
4.2 (47.8)
0.7
1.1
0.51
12.0 (29.7)
0.5
0.1
0.96
Cohen’s d ¼ M1 M2/spooled, where spooled ¼ O[(s 12 þ s 22)/2], which “small,” d ¼ 0.2; “medium,” d ¼ 0.5; and “large,” d ¼ 0.8.
0.003
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
Discussion The results of this pilot study align with a recent review28,29 indicating that patients who participated in interventions, such as individual telephone contacts with a professional, had significantly fewer HF rehospitalizations than patients who received standard care. Consistent with literature, 55% African American caregivers reported hypertension, and 20% reported other chronic health conditions. Therefore in the FamHFcare intervention, we encouraged caregivers to monitor both the patient’s HF home care and their own health and practice ways to report their chronic health conditions and symptoms to their health care provider. Aligned with early studies, the coaching framework strategies were shown to reach intermediate outcomes (i.e., improving caregivers’ confidence for HF home care)30,76 as well as to achieve long-term outcomes of reducing caregiver depression, and HF patient rehospitalizations.40 In addition, caregivers also reported that they were able to reach out for help from friends and neighbors77; this is a strength among African Americans.78 The information related to end-of-life HF care was introduced in the later FamHFcare sessions, after the research nurse developed rapport with the caregivers. This topic was identified by caregivers (n ¼ 4) as difficult to discuss, and only 5 had living wills or advance directives. Our findings align with the literature showing that African Americans are hesitant to discuss and complete legal forms for end-of-life care.79 Our social support item was limited to emotional support, thus we encourage and will undertake future research using instruments measuring multiple dimensions of social support qualitatively and quantitatively.80,81 Although our FamHFcare visual materials compensate for elders’ potential reading difficulties and health literacy, the impact of educational background could impact the study outcomes. Also, the non-significant difference in total burden scale following the intervention, which may be related to this pilot sample size, responses on “not applicable/not providing specific caregiving task,” and short-term (6-month) follow-up. The posthocanalysis on individual item responses needs careful interpretation. The significant differences on 2 items using post-hoc analyses do not represent the improvement in caregiving burden as a whole, which could lead to validity threat.82 Rather, the posthoc recoding and results identify two areas of caregivers’ improvement in the difficult of those caregiving tasks. In the future use of the intervention, this identification can be used to individualize the intervention to help each caregiver reduce the specific burdens they report. Implications for future research Notably, the effect size calculations in this pilot study can be used in power analysis for a larger longitudinal study. In addition, to empower policy advocates for HF patients and their caregivers, future researchers will need to conduct studies that employ large random samples and make comparisons to other studies of HF patients and caregiver dyads to non-caregiving dyads.83 Implications for practice Subgroup analyses based on the challenges of various educational background and levels of caregiving difficulty could be conducted to produce clinically actionable results and increase the generalizability. During the early stage of the coaching, nurses could begin guiding both the patient and family caregiver to think over, discuss, and accept the patient’s disease trajectory and to
471
complete forms for their end-of-life preferences.84 Nurses and health care professionals should initiate discussion about advanced heart failure care at the early stage of heart failure.56 Conclusion Results of this pilot study showed that the FamHFcare intervention was associated with fewer HF patient rehospitalizations and improved caregiver outcomes. These findings warrant further testing in a larger study to determine if this culturally-sensitive telephone coaching intervention reduces patients’ HF-related rehospitalizations and improves caregivers’ preparedness for HF home care management. As HF grows in prevalence on a national and international basis, culturally-sensitive interventions will be necessary to optimize management strategies in increasingly diverse populations. Acknowledgment The authors extend their appreciation to all patients and their family caregivers who took part in this study. We acknowledge Lois Moushey, RN, MSN, and Briana Hotchkiss, BSN, who helped review and evaluate culturally-sensitive educational materials and our intervention program. References 1. Mozaffarian D, Benjamin EJ, Go AS, et al, American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Circulation. 2015;131:e29e 322. 2. Heidenreich PA, Albert NM, Allen LA, et al, American Heart Association Advocacy Coordinating Committee, Council on Arteriosclerosis, Thrombosis and Vascular Biology, Council on Cardiovascular Radiology and Intervention, Council on Clinical Cardiology, Council on Epidemiology and Prevention, Stroke Council. Forecasting the impact of heart failure in the United States: a policy statement from the American Heart Association. Circ Heart Fail. 2013;6: 606e619. 3. Lam C, Smeltzer SC. Patterns of symptom recognition, interpretation, and response in heart failure patients: an integrative review. J Cardiovasc Nurs. 2013;28:348e359. 4. Husaini BA, Mensah GA, Sawyer D, et al. Race, sex, and age differences in heart failure-related hospitalizations in a southern state: Implications for prevention. Circ Heart Fail. 2011;4:161e169. 5. Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. In: Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press; 2003. 6. Evangelista LS, Ter-Galstanyan A, Moughrabi S, Moser DK. Anxiety and depression in ethnic minorities with chronic heart failure. J Card Fail. 2009;15: 572e579. 7. Thomas KL, Honeycutt E, Shaw LK, Peterson ED. Racial differences in long-term survival among patients with coronary artery disease. Am Heart J. 2010;160: 744e751. 8. Sharma A, Colvin-Adams M, Yancy CW. Heart failure in African Americans: disparities can be overcome. Cleve Clin J Med. 2014;81:301e311. 9. Shen JJ, Washington EL, Chung K, Bell R. Factors underlying racial disparities in hospital care of congestive heart failure. Ethn Dis. 2007;17:206e213. 10. Wu JR, Lennie TA, De Jong MJ, et al. Medication adherence is a mediator of the relationship between ethnicity and event-free survival in patients with heart failure. J Card Fail. 2010;16:142e149. 11. Yancy CW, Jessup M, Bozkurt B, et al, American College of Cardiology Foundation, American Heart Association Task Force on Practice Guidelines. 2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. J Am Coll Cardiol. 2013;62:e147e239. 12. Spector WD, Cohen JW, Pesis-Katz I. Home care before and after the Balanced Budget Act of 1997: shifts in financing and services. Gerontologist. 2004;44: 39e47. 13. Clark AM, Freydberg CN, McAlister FA, Tsuyuki RT, Armstrong PW, Strain LA. Patient and informal caregivers’ knowledge of heart failure: necessary but insufficient for effective self-care. Eur J Heart Fail. 2009;11:617e621. 14. Dunbar SB, Clark PC, Quinn C, Gary RA, Kaslow NJ. Family influences on heart failure self- care and outcomes. J Cardiovasc Nurs. 2008;23:258e265. 15. Molloy GJ, Johnston DW, Witham MD. Family caregiving and congestive heart failure. Review and analysis. Eur J Heart Fail. 2005;7:592e603. 16. Collins LG, Swartz K. Caregiver care. Am Fam Physician. 2011;83:1309e1317.
472
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473
17. American Heart Association. Heart Failure Patients and Caregivers Have Unmet Care Needs. Available at: http://americanheart.mediaroom.com/index.php? s¼43&item¼716; 2010. Accessed 01.03.14. 18. Harkness K, Spaling MA, Currie K, Strachan PH, Clark AM. A systematic review of patient heart failure self-care strategies. J Cardiovasc Nurs. 2015;30:121e 135. 19. Gheorghiade M, Vaduganathan M, Fonarow GC, Bonow RO. Rehospitalization for heart failure: problems and perspectives. J Am Coll Cardiol. 2013;61:391e403. 20. Wakefield BJ, Boren SA, Groves PS, Conn VS. Heart failure care management programs: a review of study interventions and meta-analysis of outcomes. J Cardiovasc Nurs. 2013;28:8e19. 21. Giamouzis G, Kalogeropoulos A, Georgiopoulou V, et al. Hospitalization epidemic in patients with heart failure: risk factors, risk prediction, knowledge gaps, and future directions. J Card Fail. 2011;17:54e75. 22. Pressler SJ, Gradua-Pizlo I, Chubinski SD, Smith G, Wheeler S, Wu J, Sloan R. Family caregiver outcomes in heart failure. Am J Crit Care. 2009;18:149e159. 23. Pressler SJ, Gradus-Pizlo I, Chubinski SD, et al. Family caregivers of patients with heart failure: a longitudinal study. J Cardiovasc Nurs. 2013;28:417e428. 24. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282:2215e2219. 25. Cuyjet AB, Akinboboye O. Acute heart failure in the African American patient. J Card Fail. 2014;20:533e540. 26. Mitchell JA, Thompson HS, Watkins DC, Shires D, Modlin Jr CS. Disparities in health-related Internet use among African American men. Prev Chronic Dis. 2014;11:E43. 27. Nundy S, Razi RR, Dick JJ, et al. A text messaging intervention to improve heart failure self-management after hospital discharge in a largely African-American population: before-after study. J Med Internet Res. 2013;15:e53. http:// dx.doi.org/10.2196/jmir.2317. 28. Sochalski J, Jaarsma T, Krumholz HM, et al. What works in chronic care management: the case of heart failure. Health Aff (Millwood). 2009;28:179e189. 29. Clark RA, Inglis SC, McAlister FA, Cleland JG, Stewart S. Telemonitoring or structured telephone support programmes for patients with chronic heart failure: systematic review and meta-analysis. BMJ. 2007;334:942. 30. Piamjariyakul U, Russell C, Smith CE, Werkowitch M, Elyachar A. The feasibility of a telephone coaching program on heart failure home management for family caregivers. Heart Lung. 2013;42:32e39. 31. Piamjariyakul U, Smith CE, Werkowitch M, Elyachar A. Part 2: enhancing heart failure home management: Integrated evidence for a new family caregiver educational plan. Appl Nurs Res. 2012;25:246e250. 32. Wongpiriyayothar A, Piamjariyakul U, Williams PD. Effects of coaching using telephone on dyspnea and physical functioning among persons with chronic heart failure. Appl Nurs Res. 2011;24:e59e66. 33. Piamjariyakul U, Smith CE, Werkowitch M, Elyachar A. Part I: heart failure home management: patients, multidisciplinary health care professionals and family caregivers’ perspectives. Appl Nurs Res. 2012;25:239e245. 34. Peter D, Robinson P, Jordan M, Lawrence S, Casey K, Salas-Lopez D. Reducing readmissions using teach-back: enhancing patient and family education. J Nurs Adm. 2015;45:35e42. 35. National Institutes of Health. Turning discovery into health. Clear Communication: A NIH health literacy initiative. http://www.nih.gov/clearcommuni cation/; Accessed 15.03.14. 36. Smith CE, Kleinbeck SVM, Boyle D, et al. Family caregivers’ motives for helping scale derived from motivation-to-help theory. J Nurs Meas. 2001;9:239e257. 37. Lewallen S, Courtright, P. Epidemiology in practice: case-control studies. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1706071/; Accessed 01.04.15. 38. Polit DF, Beck CT. Nursing Research: Principles and Methods. 7th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2004. 39. Swedberg K, Cleland J, Dargie H, et al, Grupo de Trabajo de Diagnóstico y Tratamiento de la Insuficiencia Cardíaca Crónica de la Sociedad Europea de Cardiología; Comité de la ESC para la elaboración de las Guías de Práctica Clínica. Guidelines for the diagnosis and treatment of chronic heart failure: executive summary (update 2005). The Task Force for the Diagnosis and Treatment of Chronic Heart Failure of the European Society of Cardiology. Eur Heart J. 2005;26:1115e1140. 40. Piamjariyakul U, Smith C, Russell C. Heart Failure Coaching Program Perspectives; 2012. Abstract, MNRS. 2012. 41. Cohen J. Statistical Power Analysis for the Behavioral Sciences. Hilldale, NJ: Lawrence Erlbaum Assoc.; 1987. 42. Dalton KM, Reeder KM, Blackwell K, Ellerbeck E, Smith CE. Screening and enrollment in clinical trials: essential relationships for success. Monitor. 2009;23:29e33. 43. Joint Commission. Heart failure core measure Sets. Available at: http://www. jointcommission.org/core_measure_sets.aspx; Accessed 01.04.14. 44. Mehta SK, Toto KH, Nelson LL, Drazner MH. Therapy of heart failure in African Americans: lessons from an urban public hospital. Congest Heart Fail. 2004;10: 40e43. 45. Dickson VV, McCarthy MM, Howe A, et al. Sociocultural influences on heart failure self-care among an ethnic minority black population. J Cardiovasc Nurs. 2013;28:111e118. 46. Pace R, Dawkins N, Wang B, Person S, Shikany JM. Rural African Americans’ dietary knowledge, perceptions, and behavior in relation to cardiovascular disease. Ethn Dis. 2008;18:6e12.
47. Williamson M, Harrison L. Providing culturally appropriate care: a literature review. Int J Nurs Stud. 2010;47:761e769. 48. Durant RW, Brown QL, Cherrington AL, Andreae LJ, Hardy CM, Scarinci IC. Social support among African Americans with heart failure: is there a role for community health advisors? Heart Lung. 2013;42:19e25. 49. Street RL, O’Malley KJ, Cooper LA, Haidet P. Understanding concordance in patient-physician relationships: personal and ethnic dimensions of shared identity. Ann Fam Med. 2008;6:198e205. 50. Riegel B, Dickson V, Cameron J, Bunker S, Page K, Worrall-Carter L. Symptom recognition in elders with heart failure. J Nurs Scholarsh. 2010;42:92e100. 51. American Heart Association (AHA). Getting healthy. Available at: http://www. heart.org/HEARTORG/GettingHealthy/GettingHealthy_UCM_001078_SubHome Page.jsp; Accessed 15.02.14. 52. Meyer MM, Derr P, Kendall K, Reese J. The Comfort of HomeÒ for Chronic Heart Failure: A Guide for Caregivers. Portland, Oregon: CareTrust Publications LLC; 2009. 53. Mostyn B. Pocket Guide to Low Sodium Foods. 3rd ed. Washington: InData Group. Inc; 2012. 54. Clark AM, Savard LA, Thompson DR. What is the strength of evidence for heart failure disease-management programs? J Am Coll Cardiol. 2009;54: 397e401. 55. Quinn C, Dunbar SB, Clark PC, Strickland OL. Challenges and strategies of dyad research: cardiovascular examples. Appl Nurs Res. 2010;23:e15ee20. 56. Piamjariyakul U, Myers S, Werkowitch M, Smith CE. End-of-life preferences and presence of advance directives among ethnic populations with severe chronic cardiovascular illnesses. Eur J Cardiovasc Nurs. 2014;13: 147e151. 57. Kollipara UK, Mo V, Toto KH, et al. High- sodium food choices by Southern, urban African Americans with heart failure. J Card Fail. 2006;12:144e148. 58. Frediani JK, Reilly CM, Higgins M, Clark PC, Gary RA, Dunbar SB. Quality and adequacy of dietary intake in a Southern urban heart failure population. J Cardiovasc Nurs. 2013;28:119e128. 59. Sommers MS. Color awareness: patient assessment. Available at: http://www. medscape.com/viewarticle/741045_print; Accessed 15.02.14. 60. Heisler M, Choi H, Rosen AB, et al. Hospitalization and deaths among adults with cardiovascular disease who underuse medications because of costs: a longitudinal analysis. Med Care. 2010;48:87e94. 61. Liao L, Allen LA, Whellan DJ. Economic burden of heart failure in the elderly. Pharmacoeconomics. 2008;26:447e462. 62. Zauszniewski JA. Intervention development: assessing critical parameters from the intervention recipient’s perspective. Appl Nurs Res. 2012;25:31e39. 63. Dennison CR, McEntee ML, Samuel L, et al. Adequate health literacy is associated with higher heart failure knowledge and self-care confidence in hospitalized patients. J Cardiovasc Nurs. 2011;26:359e367. 64. Williams MV, Davis T, Parker RM, Weiss BD. The role of health literacy in patient-physician communication. Fam Med. 2002;34:383e389. 65. Pfeffer MA, Swedberg K, Granger CB, et al, CHARM Investigators and Committees. Effects of candesartan on mortality and comorbidity in patients with chronic heart failure: the CHARM-Overall programme. Lancet. 2003;362: 759e766. 66. Smith CE, Piamjariyakul U, Wick JA, et al. Multidisciplinary group clinic appointments: the self-management and care of heart failure (SMAC-HF) trial. Circ Heart Fail. 2014;7:888e894. 67. Riegel B, Carlson B, Moser DK, Sebern M, Hicks FD, Roland V. Psychometric testing of the self-care of heart failure index. J Card Fail. 2004;10: 350e360. 68. Smith CE, Piamjariyakul U, Yadrich SM, Ross VM, Gajewski B, Williams AR. Complex home care: part III-economic impact on family caregiver quality of life and patient’s clinical outcomes. Nurs Econ. 2010;28:393e414. 69. Dartmouth CO-OP Charts. http://www.dartmouthcoopproject.org/coopcharts. html; Accessed 01.04.14. 70. Bakas T, Pressler SJ, Johnson E, Nauser JA, Shaneyfelt T. Family caregiving in heart failure. Nurs Res. 2006;55:180e188. 71. Carey PJ, Oberst MT, McCubbin MA, Hughes SH. Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. Oncol Nurs Forum. 1991;18:1341e1348. 72. Torres E. Psychometric properties of the Center for Epidemiologic Studies Depression Scale in African American and Black Caribbean US adults. Issues Ment Health Nurs. 2012;33:687e696. 73. American College of Physicians. Primer on Absolute vs. Relative Differences. Effective Clinical Practice. Available at: http://ecp.acponline.org/janfeb00/ primer.htm; 2000 January/February. Accessed 30.04.15. 74. Crichton NJ. Statistical considerations in design and analysis. In: Roe B, Webb C, eds. Research and Development in Clinical Nursing Practice. London: Whurr; 1998:209. 75. Kamath SA, Drazner MH, Wynne J, Fonarow GC, Yancy CW. Characteristics and outcomes in African American patients with decompensated heart failure. Arch Intern Med. 2008;168:1152e1158. 76. Smith CE, Piamjariyakul U, Dalton KM, Russell C, Wick J, Ellerbeck EF. Nurse-led multidisciplinary heart failure group clinic appointments: methods, materials and outcomes used in the clinical trial. J Cardiovasc Nurs. 2015;30:S25eS34. 77. Gallagher R, Luttik ML, Jaarsma T. Social support and self-care in heart failure. J Cardiovasc Nurs. 2011;26:439e445.
U. Piamjariyakul et al. / Heart & Lung 44 (2015) 466e473 78. Wu JR, Frazier SK, Rayens MK, Lennie TA, Chung ML, Moser DK. Medication adherence, social support, and event-free survival in patients with heart failure. Health Psychol. 2013;32:637e646. 79. Kini V, Kirkpatrick JN. Ethical challenges in advanced heart failure. Curr Opin Support Palliat Care. 2013;7:21e28. 80. Krause N. Chronic financial strain, social support, and depressive symptoms among older adults. Psychol Aging. 1987;2:185e192. 81. Krause N. Satisfaction with social support and self-rated health in older adults. Gerontologist. 1987;27:301e308.
473
82. Cook TD, Campbell DT. Quasi-experimentation: Design & Analysis Issues for Field Settings. Boston: Houghton Mifflin Company; 1979. 83. Pinquart M, Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18:250e267. 84. Rhodes RL, Batchelor K, Lee SC, Halm EA. Barriers to end-of-life care for African Americans from the providers’ perspective: opportunity for intervention development. Am J Hosp Palliat Care. 2015;32(2): 137e143.