Caregiver Communication and Preparedness During Transitions in Care: Results from a Randomized Controlled Trial

Abstract

Background:

Patients with severe and life-limiting illnesses transitioning out of the hospital often rely on family caregivers (FCGs) to manage communication with health care teams during hospitalizations and outpatient care. However, FCGs infrequently receive adequate training or support to prepare for these responsibilities. Effective communication between FCGs and health care teams is critical for preparing FCGs and reducing risks for poor outcomes. This study tested an eight-week intervention to improve FCG preparedness and communication practices during transitions out of the hospital.

Methods:

Conducted from 2018 to 2022, this randomized controlled trial included adult FCGs in rural areas in the United States (Minnesota, Wisconsin, and Iowa). FCGs caring for adults who received inpatient palliative care and were transitioning out of the hospital were eligible. The intervention group received teaching, guidance, and counseling from a palliative care nurse interventionist via video visits before and for eight weeks after discharge. The control group received monthly phone calls but no intervention. Outcomes included changes in FCG-reported preparedness for caregiving and communication with health care teams.

Results:

Of the 429 consented, 367 (183 intervention and 184 control participants) initiated the intervention; 164 had complete preparedness data, and 161 had complete communication data at baseline and eight weeks. In unadjusted analyses, the intervention group showed statistically significant improvements in preparedness but not communication practices. After adjusting for factors associated with care transitions, the findings persisted.

Conclusion:

Partnering rural FCGs with palliative care nurses via video can improve caregiver preparedness during care transitions. Improving communication practices may need more targeted strategies.

Key Message

Rural caregivers of people with life-limiting illness often face changes in responsibilities during transitions out of the hospital. Identifying and addressing unmet needs with video visits during the care transition can improve caregiver preparedness for these responsibilities, thus reducing their risk for poor outcomes associated with caregiving.

Introduction

People with severe, life-limiting illnesses face serious risks for adverse events, symptom escalation, emergency room visits, and hospital readmission when transitioning from the hospital to home or another care setting.^1–5 Increased risks have multifaceted causes, including breakdowns in communication about discharge plans, medications, and addressing symptoms.^6,7 Patients with complex needs are often too sick or cognitively impaired to fully manage their care during transitions,^8,9 leaving family caregivers^a (FCGs) responsible for communication with health care teams and ensuring patient safety and quality of care.¹⁰ However, FCGs infrequently receive the training or post-discharge support for these responsibilities,¹¹ even though this preparation is likely a critical step toward preparing FCGs for their role and reducing the risks for poor patient (hereafter referred to as care recipients or CRs) and FCG outcomes.¹² Communication during care transitions is especially critical for FCGs in rural areas, where limited resources and access to care complicate the process.^13,14

The duration of and responsibilities during the care transition phase can vary significantly depending on the complexity of the CR’s condition and health care settings involved. The transition phase can be more prolonged and complex for those with life-limiting illnesses and require significant coordination to execute the discharge care plan. Inpatient palliative care consultation can reduce symptom burden and improve quality of life,^15,16 and extending this care through the transition out of the hospital can reduce hospital readmissions and acute care utilization and continue improvements in quality of life.^17–19

We developed a transitional palliative care (TPC) intervention for rural FCGs to address unmet CR and FCG self-care needs during care transitions out of the hospital.^8,20 Our previous results showed TPC significantly improved depression symptoms and quality of life for FCGs and quality of life and reduced hospital stays in the six months following hospital discharge for CRs.^21,22 This study tested the hypothesis that change in caregiving preparedness and communication with health care teams during the intervention period would be significantly greater among FCGs in the TPC intervention compared with the attention control (AC) participants and that change in communication was necessary for improving preparedness.

Materials and Methods

Overview

Full details of the study and its protocol have been published elsewhere.^20,22 The protocol was registered with ClinicalTrials.gov on November 13, 2017 (No. NCT03339271). The Institutional Review Board approved the study on October 30, 2017 (No. 17-005188). All FCGs and CRs provided informed consent before participation began.

Conceptual framework

Transition theory²³ posits that transitions are complex, multidimensional processes that create vulnerability in individuals lacking knowledge, support, or self-efficacy. Optimal transitions depend on the nature and conditions of the transition. We considered the nature of the transition to be determined by CR factors, such as transition types (e.g., curative to palliative care, transition out of the hospital), patterns (e.g., multiple, inter-related transitions occurring sequentially), and properties (e.g., discharge disposition, mortality risk, inpatient time exposed to palliative care) (Fig. 1). Transition conditions were considered to be FCG factors (e.g., available help, relationship quality, coping skills) that affect the ability to manage transitions. Modifying transition conditions through targeted interventions is expected to enhance outcomes associated with the transition. Our intervention combined objectives of both transitional²⁴ and palliative care¹⁸ and used teaching, guidance, and counseling to modify FCG preparedness and communication skills with health care teams.

FIG. 1.

Transition theory used to conceptualize the function of a transitional palliative care intervention on family caregiver outcomes.

Design

We conducted a randomized controlled trial (RCT) to test the TPC intervention. FCGs were recruited after their hospitalized CR received a palliative care consultation in one of four participating hospitals (two academic health center hospitals and two community hospitals, all within the same health system). Recruited FCG participants were randomized into TPC or an AC arm using a computer-generated randomization list.²⁵

Participants

Figure 2 is the study’s CONSORT diagram. Enrollment ran from March 2018 to January 2022. Eligible FCGs were ≥21 years, spoke English, lived in an area in Minnesota, Wisconsin, or Iowa designated as rural (<50,000 people),²⁶ and cared for someone transitioning home or to a rehabilitation/short-term nursing facility before transitioning home. FCGs of CRs who died in the hospital or transferred to another hospital, had a left ventricular assist device, documented uncontrolled chronic pain, use of home infusion pain pumps, or active substance use were not eligible.

FIG. 2.

The Consolidated Standards of Reporting Trials (CONSORT) diagram.

Procedures

Daily reviews of inpatient palliative care consults were reviewed to assess eligible FCGs. When multiple caregivers qualified, the FCG who provided the most direct care was recruited. CRs were not directly engaged in the intervention, but consent or assent was obtained from them because data on their health and care were collected. CRs received usual hospital care regardless of FCG intervention condition, and hospital and palliative care staff were blinded to FCG assignment.

Intervention

TPC was a video-based, individually tailored intervention aimed at improving FCG self-efficacy in managing and negotiating care for themselves and the CR during care transitions and beyond. Two certified palliative care registered nurses were the study’s interventionists. They used teaching, guidance, and counseling during video visits to extend palliative care and address FCG unmet needs. The intervention began during the CR’s hospitalization and continued for eight weeks post-discharge, regardless of CR survival or hospice enrollment. The in-hospital component included a visit within 24 hours of enrollment and then up to twice-weekly visits with the FCG until CR’s discharge. Within 24–48 hours after the CR’s hospital discharge, an interventionist met with FCGs via video and then continued meeting at least twice a week for weeks 1–4 and once a week for weeks 5–8.

Interventionists partnered with FCGs to identify and develop a modifiable care plan to address the CR’s care requirements and FCG educational, emotional, spiritual, and social needs. Interventionists then provided corresponding teaching, guidance, and counseling to support FCGs.²⁷ They used a standardized assessment of needs that was reviewed at every visit.^28,29 Unmet needs and corresponding actions were documented using a cloud-based electronic health record (EHR), (Nightingale Notes, Champ Software, Mankato, Minnesota, USA), allowing for intervention documentation independent of the CR’s EHR. The primary intention was to provide FCGs tools to prepare, manage, and negotiate care for themselves and the CR so that even those without specific communication or preparedness problems received support in managing CR symptoms and strategies in adjusting to the caregiver role.

Control

FCGs in the AC group received monthly phone calls from a team member to gather data on care-related costs²¹ and provide some attention to the FCG to reduce attrition.

Fidelity

Fidelity assessment details are described elsewhere.²² First, video visits were randomly sampled to assess the interventionist’s adherence to the protocol. Second, charted documentation was reviewed by study team members (D.E.H. and C.E.V.) to assess participant adherence to the number of scheduled visits (i.e., dose) and the mode of visits (i.e., video versus another modality).

Data collection and instruments

Study data were collected from March 2018 to July 2022. FCG data were collected at baseline (during the CR’s inpatient hospital stay), two and right weeks, with endpoint data collected approximately two weeks after the death, if applicable.^30,31 Demographic data for the FCG and the CR were captured at baseline.

Outcomes

Endpoints were change in FCG caregiver preparedness and communication skills eight weeks after the CR’s initial hospital discharge. The Preparedness for Caregiving Scale^32,33 assesses perceived readiness for different domains of caregiving, including physical care and emotional support. The scale has eight items using a 5-point Likert scale ranging from “not at all prepared” to “very well prepared.” Summed scale scores reflect the level of preparedness, with higher scores indicating greater preparedness. No specific guideline for missing responses was available, and therefore, missing items were replaced with the average score of the other completed items. FCG communication skills were assessed using the Communication with Physicians scale.³⁴ This 3-item scale includes questions on how often someone prepares lists of questions for the doctor, asks questions, and discusses personal problems, with six response options, ranging from “never” to “always.” Higher scores indicate better communication. Missing responses were handled using the published guidelines.³⁴

FCG and CR characteristics

Demographic factors for FCGs and CRs were captured at baseline. These included self-reported single questions on FCG/CR’s relationship, age, sex, education, marital status, race and ethnicity, and health insurance coverage.

Nature of the transition

CR’s condition and transition variables were extracted from the EHR. Variables included the discharge disposition, age-weighted Charlson Comorbidity Index (CCI) scores³⁵ derived from International Classification of Diseases, Tenth Revision, Clinical Modification codes, time from the inpatient palliative medicine consultation to the CR’s hospital discharge, and, to account for variations in CR severity of illness, a binary variable identifying those who survived (survived = 0) and those who died (died = 1) during the study period. CCI scores are used to predict mortality risk within one year of hospitalization. Scores range from 0 to 39, with scores ≥5 considered to be at risk for mortality.³⁶

Transition conditions

Factors that could influence FCG involvement during the transition, including FCG’s health status, hours per week they provided care, duration of caregiving prior to the hospitalization, care provided to others, if they lived with the CR, and the availability of help with caregiving, were evaluated. Also assessed were FCG coping mechanisms and the quality of the FCG-CR relationship. Coping at baseline was measured using one item from the Carer Support Needs Assessment Tool. Four response options were available, ranging from “no” to “very much more.”³⁷ The 15-item Bakas Caregiving Outcomes Scale-Revised was used to assess caregiver burden.^38,39 Mean scores ranged from 1 to 7, with higher scores representing better FCG outcomes. The quality of the FCG-CR relationship was measured using the Mutuality Scale of the Family Care Inventory,^32,33 with scores ranging 1–4, with higher scores indicating better relationship quality.

Statistical analyses

The analytic sample included 367 FCGs (183 control and 184 intervention). The total number of participants included 164 FCGs with complete change in preparedness (72 control, 92 intervention) and 161 FCGs with change in communication scores (69 control, 92 intervention). We had 80% power at 5% level of significance to detect a medium effect size of 0.44 standard deviations or larger for preparedness and 0.45 for communication practices.⁴⁰ Although we met our a priori recruitment goal, our analytical sample is smaller than planned for due to higher-than-anticipated loss to follow-up (i.e., nonresponse) and a higher rate of expected CR death prior to the eight-week assessment.

Associations of FCG and CR characteristics, the nature of the transition variables, conditions of the transition variables and outcomes were described descriptively using two sample t tests, Wilcoxon signed rank tests, or chi-square tests as appropriate.

We conducted a longitudinal, intention-to-treat analysis to assess changes in preparedness for caregiving and communication skills from baseline to eight weeks. For participants without baseline data for outcome variables, missing scores for this analysis were replaced using the last observation carried forward (i.e., data from assessments at two weeks), when available. Change in outcomes from baseline to eight weeks was analyzed using univariable and multivariable linear regression with intervention (yes, no) as the primary effect of interest. The multivariable model was adjusted for potential confounding variables significantly associated with the outcomes in bivariate analysis or included in the conceptual model (e.g., discharge disposition, relationship quality). All tests were two-sided, with p-values <0.05 considered statistically significant. The analysis was performed using SAS version 9.4 (SAS Inc., Cary, NC).

Results

Results on recruitment and retention efforts have been published elsewhere and are reported again in Table 1. Of 8596 CRs screened, 87% did not meet either the FCG or the CR study criteria (n = 8167). Fourteen percent refused to participate (n = 1070); however, 429 FCGs enrolled. Of the 429 consented, 215 were randomized into the TPC arm, and 214 were assigned to the AC arm. Thirty-six (8%) participants became ineligible after consent because the CR died in the hospital or was discharged to another hospital. Another 6% (n = 26) decided against participation prior to the CR’s hospital discharge. In all, 367 initiated the study, with 184 receiving TPC and 183 receiving AC. Nearly equal proportions of FCGs in the TPC and AC groups did not complete both baseline and 8-week endpoint data because they withdrew (TPC: n = 14, 7.6%; AC: n = 16, 8.7%), or the CRs died (TPC=n = 61, 33.2%; AC, n = 55, 30.1%) before the intervention’s completion. Loss to follow-up was significantly higher in the AC group (TPC: n = 17, 9.2% vs., AC: n = 40, 21.9%, p < 0.01).

Table 1.

Family Caregiver and Care Recipient Demographics

	FCG				CR
	Control(N = 183)	Intervention(N = 184)	Total(N = 367)	p-Value	Control(N = 183)	Intervention(N = 184)	Total(N = 367)	p-Value
Age^a				0.60^b				0.64^b
N	161	176	337		183	184	367
Mean (SD)	58.7 (13.0)	58.1 (12.4)	58.4 (12.7)		66.8 (14.3)	66.7 (15.1)	66.7 (14.7)
Race				0.02^c				0.40^c
Missing	42	19	61		26	11	37
Non-White	10 (7.1%)	2 (1.2%)	12 (3.9%)		2 (1.3%)	2 (1.2%)	4 (1.2%)
White	128 (90.8%)	161 (97.6%)	289 (94.4%)		155 (98.7%)	169 (97.7%)	324 (98.2%)
>1 Race	3 (2.1%)	2 (1.2%)	5 (1.6%)		0 (0.0%)	2 (1.2%)	2 (0.6%)
Ethnicity				0.22^c				0.34^c
Missing	62	28	90		30	15	45
Hispanic or Latino	0 (0.0%)	2 (1.3%)	2 (0.7%)		0 (0.0%)	1 (0.6%)	1 (0.3%)
Not Hispanic or Latino	121 (100.0%)	154 (98.7%)	275 (99.3%)		153 (100.0%)	168 (99.4%)	321 (99.7%)
Education level				0.50^c				0.26^c
Missing	58	20	78		80	52	132
<High school	2 (1.6%)	2 (1.2%)	4 (1.4%)		4 (3.9%)	14 (10.6%)	18 (7.7%)
High school	22 (17.6%)	21 (12.8%)	43 (14.9%)		34 (33.0%)	40 (30.3%)	74 (31.5%)
Vocational training/Any college	101 (80.8%)	141 (86.0%)	242 (83.7%)		65 (63.1%)	78 (59.1%)	143 (60.9%)
Sex^a				0.94^c				0.23^c
Male	55 (30.1%)	56 (30.4%)	111 (30.2%)		94 (51.4%)	106 (57.6%)	200 (54.5%)
Female	128 (69.9%)	128 (69.6%)	256 (69.8%)		89 (48.6%)	78 (42.4%)	167 (45.5%)
Marital status				0.52^c				0.92^c
Missing	58	22	80		57	21	78
Single/Divorced	17 (13.6%)	18 (11.1%)	35 (12.2%)		23 (18.3%)	29 (17.8%)	52 (18.0%)
In Relation/Separated	108 (86.4%)	144 (88.9%)	252 (87.8%)		103 (81.7%)	134 (82.2%)	237 (82.0%)
Health insurance^a				0.62^c				0.54^c
Missing	89	66	155
Medicaid ± other	7 (7.4%)	4 (3.4%)	11 (5.2%)		13 (7.1%)	17 (9.2%)	30 (8.2%)
Medicare ± private	28 (29.8%)	36 (30.5%)	64 (30.2%)		110 (60.1%)	116 (63.0%)	226 (61.6%)
Private	58 (61.7%)	77 (65.3%)	135 (63.7%)		57 (31.1%)	50 (27.2%)	107 (29.2%)
Uninsured/unknown	1 (1.1%)	1 (0.8%)	2 (0.9%)		3 (1.6%)	1 (0.5%)	4 (1.1%)
Age-weighted Charlson Comorbidity Index (mean)					11.2 (4.1)	11.7 (4.0)	11.5 (4.1)	0.59
Prevalence of CR chronic conditions (three most prevalent conditions)
Metastatic solid tumor and/or other cancer					69.9%	74.5%	72.2%	0.35
Moderate/severe renal disease					42.6%	46.2%	44.4%	0.49
Chronic pulmonary disease					50.3%	44.6%	47.4%	0.27
Died during study period					69 (37.7%)	81 (44.0%)	150 (40.9%)	0.222
Relationship between FCG and CR				0.94^c
Spouse/significant other	113 (61.7%)	112 (60.9%)	225 (61.3%)
Parent	49 (26.8%)	52 (28.3%)	101 (27.5%)
Child	7 (3.8%)	9 (4.9%)	16 (4.4%)
Other relative	11 (6.0%)	8 (4.3%)	19 (5.2%)
Friend	3 (1.6%)	3 (1.6%)	6 (1.6%)
Live together (FCG and CR)				0.45^c
Missing	58	21	79
Yes, live together	94 (75.2%)	116 (71.2%)	210 (72.9%)
No, live separately	31 (24.8%)	47 (28.8%)	78 (27.1%)
Length of time providing care				0.47^c
Missing	62	31	93
<1 year	59 (48.8%)	70 (45.8%)	129 (47.1%)
1–5 years	37 (30.6%)	57 (37.3%)	94 (34.3%)
5+ years	25 (20.7%)	26 (17.0%)	51 (18.6%)

Missing CR data were augmented using electronic health record data.

Wilcoxon rank sum.

Chi-square.

CR, care recipient; FCG, family caregiver; SD, standard deviation.

Table 1 shows no statistically significant demographic differences between the TPC and AC arms, except for race. Although 94% of the sample was White (94%), statistically more FCGs in the AC compared with TPC were not White. Forty-one percent of CRs (n = 150) died after consenting to the study, with no significant difference in mortality between intervention conditions (p = 0.22).

No statistically significant differences were found between the TPC and AC arms in CCI, lengths of stay, or time between palliative care consult and discharge (Table 2). Mean baseline scores for caregiver burden differed statistically by arm, with the AC arm having significantly lower scores, but the mean difference was not clinically meaningful (0.1 on a 1–7 scale). No statistically significant differences were found between the groups at baseline for preparedness, but the AC group reported significantly greater communication skills than the intervention group at baseline (3.4 vs. 3.1; p = 0.03).

Table 2.

Baseline Scores for Nature of Transition, Transition Conditions and Outcomes by Intervention Conditions

	Control (n = 183)	Intervention (n = 184)	Total (n = 367)	p-Value
Nature of transition-care recipient variables
CR length of stay^a	14.3 (24.3)	13.2 (12.1)	13.8 (19.2)	0.58
Days from palliative consultation to discharge^a	10.8 (23.1)	8.9 (9.9)	9.8 (17.7)	0.31
Discharged home (% discharged home vs. discharged to short-term skilled nursing or rehabilitation)^b	75.4%	74.7%	75.1%	0.88
Died during study period^c	37.7%	44.0%	40.9%	0.22
Transition conditions for FCG
Relationship Quality (Mutuality)^a	3.4 (0.5)	3.4 (0.5)	3.4 (0.5)	0.98
FCG burden (BCOS-R)	4.5 (0.6)	4.4 (0.6)	4.5 (0.6)	0.04
FCG coping (CSNAT) (% needed quite a bit more support)^b	21%	21%	21%	0.09

	Control (n = 126)	Intervention (n = 165)	Total (n = 291)	p-Value
Outcomes
Preparedness	2.6 (0.8)	2.5 (0.7)	2.5 (0.7)	0.27
Communication	3.4 (1.1)	3.1 (1.0)	3.2 (1.1)	0.03

Equal variance t test.

Wilcoxon rank.

Chi-square test.

BCOS-R, Bakas Caregiving Outcomes Scale-Revised; CSNAT, Carer Support Needs Assessment Tool.

In unadjusted analyses, TPC participants reported significantly greater change in preparedness for the caregiver role than AC participants (AC: 0.0; TPC: 0.3; p-value 0.005) (Table 3). After controlling for gender, age, relationship, relationship quality, availability of other help, death during the intervention period, coping, predischarge exposure to the intervention, and discharge disposition, preparedness among AC participants got worse over time and significantly improved among TPC participants (AC: −0.21; TPC: 0.09; p-value 0.004). In contrast, in unadjusted analyses, TPC participants did not have significantly greater change in communication skills than AC participants (AC: 0.7; TPC: 1.0; p value 0.25). After controlling for gender, age, relationship, relationship quality, availability of other help, death during the intervention period, coping, predischarge exposure, and discharge disposition, change in communication did not differ between TPC and AC participants (AC: 0.7; TPC: 0.86; p value 0.41). Because there was no significant change in communication by arm, additional analyses to assess if communication modified the relationship between intervention arm and preparedness were not necessary.

Table 3.

Unadjusted and Adjusted Changes in Scores for Study Outcomes between Baseline and Eight Weeks

	Unadjusted change in scale scores			Adjusted change in scale scores^a
	Control^b	Intervention^b	p-Value^c	Control	Intervention	p-Value
Change in preparedness	0.0 (0.07)	0.3 (0.6)	0.005	−0.21 (0.2)	0.09 (0.2)	0.004
Change in FCG communication	0.7 (1.2)	1.0 (1.1)	0.25	0.70 (0.3)	0.86 (0.3)	0.41

Models adjusted for sex, age, relationship between FCG and CR, relationship quality (mutuality), provision of other help, coping, time from palliative care consult to hospital discharge, death during the intervention period, and discharge disposition.

Mean (SD).

Two-sample t test.

Discussion

Following the eight-week TPC intervention for rural FCGs, TPC participants were statistically better prepared for their caregiving role than AC participants, although communication skills with health care providers did not significantly differ between groups. Change in preparedness was not directly or indirectly attributable to changes in communication skills.

FCGs of palliative care patients often need more education to develop requisite knowledge and skills to provide optimal care to CRs,^41–44 and better-prepared FCGs experience lower caregiver strain after CR hospitalization.^33,45 Our findings suggest preparedness can be fostered through teaching, guidance, and counseling delivered via video throughout the transition period. By reassessing unmet needs throughout the intervention, FCGs learned to manage complex problems and address emerging issues during the transition course. The United States and other countries are facing a “family care gap,” with fewer FCGs available. Consequently, it is likely that in the future, fewer FCGs will be available and prepared for their caregiver role.⁴⁶ Even when FCGs are available, they are often unexpectedly thrust into their caregiving role due to a health care crisis or to compensate for deficiencies in available care delivery services.⁴⁷ Our study shows benefit and utility of using video technology to reach even remote-dwelling FCGs to help address preparedness, a concept that includes mastery, self-efficacy, competence, quality of care, and self-care.

Although preparedness was significantly different between intervention groups, the change in preparedness among the intervention group was relatively small, and to date there is no guidance on what proportion of change is clinically meaningful. It is reasonable, however, to consider that a clinically meaningful outcome is one that shows that caregivers became more prepared over time, and in our study, caregivers in the intervention group improved (albeit a small increment), while the AC group got worse over time. These findings are especially encouraging when considered together with the impact TPC has had on reductions in patient hospitalizations up to 6 months after hospital discharge²¹ and benefits to health and well-being for FCGs and CRs.²² With potential reimbursement strategies for TPC⁴⁸ coupled with newly approved billing codes to address caregiver training needs,^49–51 it is possible that previous barriers for integrating caregiver-focused interventions into palliative care practice are surmountable.

Effective communication during care transitions includes sharing and exchanging information among all responsible for the CR’s care and care plan. Our findings suggest improving FCG communication skills may require more targeted communication strategies and refined assessments for determining optimal communication. TPC may not have significantly changed communication skills because the assessments used were adapted from CR to FCG communication with health care teams. Skills like preparing questions for the doctor, asking questions, and discussing personal problems are relevant skills used in shared-decision making⁵² and advocacy training, strategies others have suggested are needed to promote communication between FCG needs to CR providers,^53,54 but these strategies may be more suitable for chronic disease management than for shorter-term care transition needs for people with life-limiting illnesses. Interventionists, for example, may have helped FCG with skills to improve discussions about disease-directed care, palliative or goals of care, or death and dying for the CR but did not concentrate on identifying and promoting FCG self-care with providers. Refining assessments to determine appropriate and effective communication skills during care transitions is critical and may encourage greater engagement of FCG in CR care, which are priorities outlined in the National Strategy to Support FCGs⁵⁵ and in other studies.^56,57

Interventions to change communication practices between FCGs and health care providers will likely require changes in provider practices. Providers are hesitant to address FCG unmet needs without protocols or resources for addressing them and, consequently, often avoid these conversations.^58,59 More research is needed to develop acceptable and feasible provider communication interventions that they consider ethical and within their scope of practice.

Our study has several strengths. First, we included FCGs of CRs who received palliative care regardless of diagnoses, thus showing the intervention improved preparedness across various caregiving situations. Second, we had a higher proportion of male FCGs and younger CRs than typical in caregiving intervention studies,⁶⁰ yet outcomes did not vary by these characteristics, suggesting that our tailored approach improved preparedness across diverse groups of participants. Third, video visits could be effectively done among rural FCGs, thus providing an accessible and relatively low-cost intervention⁴⁸ to a population often facing a scarcity of services.

Our study has limitations. Although the percentage of CRs who died before completion of the intervention did not significantly differ across conditions, more data were missing among AC participants. Hence, outcomes may have been influenced by participant attrition or nonresponse before the conclusion of the trial. Recruitment and retention of FCGs is a known challenge,⁶¹ and was a primary reason for including an AC condition instead of a standard control. Even with no active intervention delivered to AC participants during calls, however, the additional attention may have influenced outcomes. Moreover, we did not assess variation in care instructions, capacity, or willingness to provide care during discharge planning or the quality of discharge instructions. Although an RCT design should minimize variations in discharge quality, it remains possible.

Conclusions

Partnering rural FCGs with palliative care nurses and using tailored video interventions can improve caregiver preparedness during care transitions. This is critically important given the risks in care transitions among seriously ill patients. However, building FCG communication skills may require more targeted strategies for FCGs and providers. Research is needed to identify the most effective communication strategies associated with FCG preparedness and their impact on care transitions.

Footnotes

Authors’ Contributions

J.M.G.: Conceptualization, methodology, investigation, supervision, resources, writing—original draft, and writing—review and editing. B.G.K.: Methodology and writing—review and editing. C.E.V.: Conceptualization, methodology, investigation, and writing—review and editing. J.N.M.: Conceptualization, formal analysis, methodology, and writing—review and editing. W.S.H.: Formal analysis, writing—review and editing, and funding acquisition. A.M.G.: Methodology and writing—review and editing. C.I.: Writing—review and editing. E.M.W.: Data curation and writing—review and editing. A.M.D.: Data curation, and writing—review and editing. E.E.T.: Data curation and writing—review and editing. C.J.S.: Data curation and writing—review and editing. D.E.H.: Conceptualization, methodology, investigation, writing—review and editing, and funding acquisition.

Author Disclosure Statement

The authors have no conflicts of interest to report.

Funding Information

The study was supported by the National Institutes of Health, National Institute of Nursing Research (NIH-NINR R01NR016433).

References

Forster

, Clark

, Menard

, et al. Adverse events among medical patients after discharge from hospital. CMAJ, 2004; 170(3):345–349.

Forster

, Murff

, Peterson

, et al. The incidence and severity of adverse events affecting patients after discharge from the hospital. Ann Intern Med, 2003; 138(3):161–167; doi: 10.7326/0003-4819-138-3-200302040-00007

Forster

, Murff

, Peterson

, et al. Adverse drug events occurring following hospital discharge. J Gen Intern Med, 2005; 20(4):317–323; doi: 10.1111/j.1525-1497.2005.30390.x

Auerbach

, Kripalani

, Vasilevskis

, et al. Preventability and causes of readmissions in a national cohort of general medicine patients. JAMA Intern Med, 2016; 176(4):484–493; doi: 10.1001/jamainternmed.2015.7863

Zaslavsky

, Zisberg

, Shadmi

. Impact of functional change before and during hospitalization on functional recovery 1 month following hospitalization. J Gerontol A Biol Sci Med Sci, 2015; 70(3):381–386; doi: 10.1093/gerona/glu168

Mansukhani

, Bridgeman

, Candelario

, et al. Exploring transitional care: Evidence-based strategies for improving provider communication and reducing readmissions. P T, 2015; 40(10):690–694.

Bucknall

, Hutchinson

, Botti

, et al. Engaging patients and families in communication across transitions of care: An integrative review. Patient Educ Couns, 2020; 103(6):1104–1117; doi: 10.1016/j.pec.2020.01.017

Holland

, Vanderboom

, Ingram

, et al. The feasibility of using technology to enhance the transition of palliative care for rural patients. Comput Inform Nurs, 2014; 32(6):257–266; doi: 10.1097/CIN.0000000000000066

Levine

, Rutberg

, Jack

, et al. Understanding and Enhancing the Role of Family Caregivers in the Re-Engineered Discharge. New York; 2014. Available from: http://www.bu.edu/fammed/projectred/Project%20RED%20Revised%20Toolkit%209-2012/REDTool7FamilyCaregiversUnitedHospital%20Fund.pdf [Last accessed: October, 2024].

10.

Coleman

, Roman

. Family caregivers’ experiences during transitions out of hospital. J Healthc Qual, 2015; 37(1):12–21; doi: 10.1097/01.JHQ.0000460117.83437.b3

11.

Fields

, Rodakowski

, Leighton

, et al. Including and training family caregivers of older adults in hospital care: Facilitators and barriers. J Nurs Care Qual, 2020; 35(1):88–94; doi: 10.1097/NCQ.0000000000000400

12.

Coleman

, Parry

, Chalmers

, et al. The care transitions intervention: Results of a randomized controlled trial. Arch Intern Med, 2006; 166(17):1822–1828; doi: 10.1001/archinte.166.17.1822

13.

Bakitas

, Allen Watts

, Malone

, et al. Forging a new frontier: Providing palliative care to people with cancer in rural and remote areas. J Clin Oncol, 2020; 38(9):963–973; doi: 10.1200/JCO.18.02432

14.

Marshall

, Virdun

, Phillips

. Evidence-based models of rural palliative care: A systematic review. Palliat Med, 2023; 37(8):1129–1143; doi: 10.1177/02692163231183994

15.

O’Connor

, Moyer

, Behta

, et al. The impact of inpatient palliative care consultations on 30-day hospital readmissions. J Palliat Med, 2015; 18(11):956–961; doi: 10.1089/jpm.2015.0138

16.

Quinn

, Shurrab

, Gitau

, et al. Association of receipt of palliative care interventions with health care use, quality of life, and symptom burden among adults with chronic noncancer illness: A systematic review and meta-analysis. JAMA, 2020; 324(14):1439–1450; doi: 10.1001/jama.2020.14205

17.

Paramanandam

, Boohene

, Tran

, et al. Impact of a hospital community based palliative care partnership: Continuum from hospital to home. J Palliat Med, 2020; 23(12):1599–1605; doi: 10.1089/jpm.2020.0090

18.

Saunders

, Killackey

, Kurahashi

, et al.; American Academy of Hospice and Palliative Medicine Research Committee Writing Group. Palliative care transitions from acute care to community-based care-a systematic review. J Pain Symptom Manage, 2019; 58(4):721–734 e1; doi: 10.1016/j.jpainsymman.2019.06.005

19.

Vernon

, Hughes

, Kowalczyk

. Measuring effectiveness in community-based palliative care programs: A systematic review. Soc Sci Med, 2022; 296:114731; doi: 10.1016/j.socscimed.2022.114731

20.

Holland

, Vanderboom

, Mandrekar

, et al. A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: Study protocol for a randomized controlled trial. Trials, 2020; 21(1):895; doi: 10.1186/s13063-020-04806-0

21.

Kaufman

, Huang

, Holland

, et al. Healthcare use and out-of-pocket costs for rural family caregivers and care recipients in a randomized controlled trial. J Am Geriatr Soc, 2024; 72(8):2523–2531; doi: 10.1111/jgs.18934

22.

Griffin

, Mandrekar

, Vanderboom

, et al. Transitional palliative care for family caregivers: Outcomes from a randomized controlled trial. J Pain Symptom Manage, 2024; 68(5):456–466; doi: 10.1016/j.jpainsymman.2024.07.030

23.

Meleis

, Sawyer

, Im

, et al. Experiencing transitions: An emerging middle-range theory. ANS Adv Nurs Sci, 2000; 23(1):12–28; doi: 10.1097/00012272-200009000-00006

24.

Naylor

, Shaid

, Carpenter

, et al. Components of comprehensive and effective transitional care. J Am Geriatr Soc, 2017; 65(6):1119–1125; doi: 10.1111/jgs.14782

25.

Gustavson

, Horstman

, Cogswell

, et al. Caregiver recruitment strategies for interventions designed to optimize transitions from hospital to home: Lessons from a randomized trial. Trials, 2024; 25(1):454; doi: 10.1186/s13063-024-08288-2

26.

Barton

, Azam

. National Healthcare Quality and Disparities Report Chartbook on Rural Health Care. Rockville, MD; 2017. Available from: https://www.ahrq.gov/sites/default/files/wysiwyg/research/findings/nhqrdr/chartbooks/qdr-ruralhealthchartbook-update.pdf [Last accessed: October 24, 2024].

27.

Griffin

, Vanderboom

, Gustavson

, et al. A methodological approach for documenting multi-component interventions targeting family caregivers. J Appl Gerontol, 2023; 42(3):487–492; doi: 10.1177/07334648221137882

28.

Holland

, Vanderboom

, Dose

, et al. Describing transitional palliative nursing care using a standardized terminology. J Hosp Palliat Nurs, 2017; 19(3):275–281; doi: 10.1097/njh.0000000000000342

29.

Martin

, Monsen

, Bowles

. The Omaha system and meaningful use: Applications for practice, education, and research. Comput Inform Nurs, 2011; 29(1):52–58; doi: 10.1097/NCN.0b013e3181f9ddc6

30.

Casarett

, Knebel

, Helmers

. Ethical challenges of palliative care research. J Pain Symptom Manage, 2003; 25(4):S3–S5; doi: 10.1016/s0885-3924(03)00058-7

31.

DiBiasio

, Clark

, Gozalo

, et al. Timing of survey administration after hospice patient death: Stability of bereaved respondents. J Pain Symptom Manage, 2015; 50(1):17–27; doi: 10.1016/j.jpainsymman.2015.01.006

32.

Archbold

, Stewart

, Greenlick

, et al. (eds). The Clinical Assessment of Mutuality and Preparedness in Family Caregivers to Frail Older People. Springer Publishing Company: New York; 1992.

33.

Archbold

, Stewart

, Greenlick

, et al. Mutuality and preparedness as predictors of caregiver role strain. Res Nurs Health, 1990; 13(6):375–384; doi: 10.1002/nur.4770130605

34.

Lorig

, Stewart

, Ritter

, et al. Outcome Measures for Health Education and other Health Care Interventions. Sage Publications: Thousand Oaks, CA; 1996.

35.

Charlson

, Pompei

, Ales

, et al. A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation. J Chronic Dis, 1987; 40(5):373–383; doi: 10.1016/0021-9681(87)90171-8

36.

Bannay

, Chaignot

, Blotiere

, et al. The best use of the Charlson comorbidity index with electronic health care database to predict mortality. Med Care, 2016; 54(2):188–194; doi: 10.1097/MLR.0000000000000471

37.

Ewing

, Brundle

, Payne

, et al.; National Association for Hospice at Home. The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: A validation study. J Pain Symptom Manage, 2013; 46(3):395–405; doi: 10.1016/j.jpainsymman.2012.09.008

38.

Bakas

, Champion

. Development and psychometric testing of the Bakas caregiving outcomes scale. Nurs Res, 1999; 48(5):250–259; doi: 10.1097/00006199-199909000-00005

39.

Bakas

, Champion

, Perkins

, et al. Psychometric testing of the revised 15-item Bakas caregiving outcomes scale. Nurs Res, 2006; 55(5):346–355; doi: 10.1097/00006199-200609000-00007

40.

Cohen

. Statistical Power Analysis for the Behavioral Sciences. 2nd ed.. Routledge: New York; 1988.

41.

Northouse

, Katapodi

, Song

, et al. Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA Cancer J Clin, 2010; 60(5):317–339; doi: 10.3322/caac.20081

42.

Stenberg

, Ruland

, Miaskowski

. Review of the literature on the effects of caring for a patient with cancer. Psychooncology, 2010; 19(10):1013–1025; doi: 10.1002/pon.1670

43.

Chi

, Demiris

. A systematic review of telehealth tools and interventions to support family caregivers. J Telemed Telecare, 2015; 21(1):37–44; doi: 10.1177/1357633X14562734

44.

Piamjariyakul

, Smith

, Russell

, et al. The feasibility of a telephone coaching program on heart failure home management for family caregivers. Heart Lung, 2013; 42(1):32–39; doi: 10.1016/j.hrtlng.2012.08.004

45.

Schumacher

, Stewart

, Archbold

. Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiver outcomes. Nurs Res, 2007; 56(6):425–433; doi: 10.1097/01.NNR.0000299852.75300.03

46.

Gaugler

. Supporting family care for older adults: Building a better bridge. In: Bridging the Family Care Gap. ( Gaugler

. ed.) Academic Press: Cambridge, MA; 2021; pp. 427–451.

47.

Mohammed

, Swami

, Pope

, et al. “I didn’t want to be in charge and yet I was”: Bereaved caregivers’ accounts of providing home care for family members with advanced cancer. Psychooncology, 2018; 27(4):1229–1236; doi: 10.1002/pon.4657

48.

Kaufman

, Holland

, Vanderboom

, et al. Implementation costs of technology-enhanced transitional palliative care for rural caregivers. Am J Hosp Palliat Care, 2024; 41(1):38–44; doi: 10.1177/10499091231156145

49.

Code_of_Federal_Regulations. 42 CFR Parts 405, 410, 411, 414, 415, 418, 422, 423, 424, 425, 455, 489, 491, 495, 498, and 600. 2024. Available from: https://www.ecfr.gov/current/title-42/chapter-IV [Last accessed: October 24, 2024].

50.

National_Alliance_for_Caregiving. Policy Brief: How the 2024 Medicare Physician Fee Schedule Advances Supports for Family Caregivers. 2023. Available from: https://www.actonraise.org/wp-content/uploads/2023/12/NAC_Physician-Fee-Rule-Briefing_120723.pdf [Last accessed: October, 2024].

51.

Centers_for_Medicare_&_Medicaid_Services. Medicare and Medicaid Programs; CY 2024 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment and Coverage Policies; Medicare Shared Savings Program Requirements; Medicare Advantage; Medicare and Medicaid Provider and Supplier Enrollment Policies; and Basic Health Program. 2023. Available from: https://www.federalregister.gov/documents/2023/08/07/2023-14624/medicare-and-medicaid-programs-cy-2024-payment-policies-under-the-physician-fee-schedule-and-other?utm_source=federalregister.gov&utm_medium=email&utm_campaign=comment+publication+notification+email [Last accessed: October 24, 2024].

52.

Aboumatar

, Pitts

, Sharma

, et al. Patient engagement strategies for adults with chronic conditions: An evidence map. Syst Rev, 2022; 11(1):39; doi: 10.1186/s13643-021-01873-5

53.

Given

, Sherwood

, Given

. What knowledge and skills do caregivers need? Journal of Social Work Education, 2008; 44(sup3):115–123; doi: 10.5175/JSWE.2008.773247703

54.

Griffin

, Riffin

, Havyer

, et al. Integrating family caregivers of people with Alzheimer’s disease and dementias into clinical appointments: Identifying potential best practices. J Appl Gerontol, 2020; 39(11):1184–1194; doi: 10.1177/0733464819880449

55.

AdministrationForCommunityLiving. 2022 National Strategy to Support Family Caregivers. 2022. Available from: https://acl.gov/CaregiverStrategy [Last accessed: October 24, 2024].

56.

Riffin

, Wolff

, Estill

, et al. Caregiver needs assessment in primary care: Views of clinicians, staff, patients, and caregivers. J Am Geriatr Soc, 2020; 68(6):1262–1270; doi: 10.1111/jgs.16401

57.

Fields

, Turner

, Naidu

, et al. Assessments for caregivers of hospitalized older adults. Clin Nurs Res, 2020; 29(6):382–391; doi: 10.1177/1054773818816207

58.

Griffin

, Riffin

, Bangerter

, et al. Provider perspectives on integrating family caregivers into patient care encounters. Health Serv Res, 2022; 57(4):892–904; doi: 10.1111/1475-6773.13932

59.

Boucher

, Shepherd-Banigan

, McKenna

, et al. Inclusion of caregivers in veterans’ care: A critical literature review. Med Care Res Rev, 2021; 78(5):463–474; doi: 10.1177/1077558720944283

60.

Kramer

, Thompson

, (eds). Men as Caregivers: Theory, Research, and Service Implications. Springer Publishing Company: New York, NY; 2002.

61.

Waldron

, Janke

, Bechtel

, et al. A systematic review of psychosocial interventions to improve cancer caregiver quality of life. Psychooncology, 2013; 22(6):1200–1207; doi: 10.1002/pon.3118