From Caregiver to Caregiver: The

Wisdom and Insights of Former

NFCSP Caregivers

Final Report

Prepared for:

Administration for Community Living 

Office of Performance and Evaluation

Submitted by:

New Editions Consulting, Inc.

The Lewin Group

October 2, 2018
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Table of Contents

I. Introduction ...............................................................................................................................2

A. Questions of Interest for ACL.............................................................................................2

B. Population ............................................................................................................................3

II. The Role and Importance of Family Caregivers...................................................................3

III. Impacts of Family Caregiving .................................................................................................4

IV. The OAA and NFCSP...............................................................................................................5

V. Bereaved Caregivers.................................................................................................................6

VI. Access and Usage of Support Services by Bereaved Caregivers.........................................8

VII. Unmet Needs of Bereaved Caregivers....................................................................................8

VIII. Methodology...............................................................................................................................9

A. Qualitative Data Analysis – Stratifications.......................................................................10

IX. Coding and Analysis ...............................................................................................................10

X. Results.......................................................................................................................................11

A. Demographic Data.............................................................................................................11

B. Services Accessed by Caregivers......................................................................................11

C. NFCSP Services vs. Non-NFCSP Services......................................................................12

D. Circumstances Leading to Service Access .......................................................................14

E. Program Quality.................................................................................................................14

F. Advice to Caregivers .........................................................................................................15

G. End of Life and Bereavement............................................................................................16

H. Program Quality.................................................................................................................17

I. Advice to Bereaved Caregivers.........................................................................................17

XI. Conclusions and Recommendations .....................................................................................18

A. Recommendations to ACL and the Aging Services Network..........................................19

Appendix I: Interview Guide Protocol ..........................................................................................20

Introduction ...............................................................................................................................20

A. Identifying Gaps in Support Programs and Services........................................................21

B. Use of NFCSP Services.....................................................................................................21

C. Demographic and SDOH Information ..............................................................................22

Appendix II: Coding Methodology Exhibits..................................................................................24

References ..........................................................................................................................................29
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I. Introduction 

In 2016, the Administration on Aging (AoA), which is part of the Administration for Community 

Living (ACL), funded an outcome evaluation focused on the collection of survey response data 

from a nationally representative sample of National Family Caregiver Support Program (NFCSP)

caregivers, a matched comparison group of caregivers that do not receive NFCSP services, and a 

sample of care recipients. The objectives of the outcome evaluation were to:

 Help ACL understand which kinds of services are most helpful for caregivers and identify 

any unmet needs of caregivers and gaps in support for them;

 Identify any NFCSP resources, organizational characteristics, and implementation

practices that appear to contribute to positive outcomes for caregivers receiving the key

NFCSP services of respite and/or caregiver training/education and for their care

recipients;

 Assess the impact of services on the ability of caregivers to continue to provide homebased caregiving as needed; for example, by examining the relationship between selfreported caregiver measures of physical and mental well-being and the amount of 

caregiver services received; and

 Examine the relationship between NFCSP client outcomes and key processes and

characteristics of the Area Agencies on Aging managing and/or providing NFCSP

services.

During the course of the 12-month data collection period for the outcome evaluation, some 

caregivers (CGs) were deemed “ineligible” to complete the final interview because their care 

recipient (CR) had passed away. However, a portion of these individuals expressed an interest in 

telling their story. As part of the Office of Performance and Evaluation (OPE) Support Contract, 

the New Editions team conducted a small, retrospective study of bereaved caregivers from the 

NFCSP outcome evaluation. This study gathered information on the service components/needs of 

bereaved caregivers who agreed to participate in a telephone interview. The results and conclusions 

from this study aim at affording local service providers, Area Agencies on Aging (AAAs), State 

Units on Aging (SUAs), and AoA insights for supporting individuals at all stages of the caring 

process.

A. Questions of Interest for ACL

Key questions for this task include the following:

 What were the circumstances that directed/led caregivers to services?

 What supports, either formal or informal, were caregivers receiving? 

 How did the caregiver’s support needs evolve over the course of the caregiving 

experience? 

 What supports were caregivers offered or did they need after their care recipients passed 

away? If none were offered, what did they need? 
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B. Population

The population frame for this study was NFCSP caregivers included in the outcome evaluation 

who did not complete 12-month interviews (Nov 2017-Jan 2018) because their care recipient 

passed away prior to the end of the measurement period. The eligible sample size is 46

individuals, however only eight individuals agreed to participate in the study. 

II. The Role and Importance of Family Caregivers

As individuals age and begin to experience declines in their health, family members and friends 

commonly assume greater roles in making treatment decisions and providing other supports to the 

care recipient. In many cases, these family and friends take on the role of caregiver, performing 

tasks that direct-care workers would otherwise provide such as assisting with activities of daily 

living (ADLs) and instrumental activities of daily living (IADLs) (Institute of Medicine [IoM], 

2008). As defined in the 2016 reauthorization of the Older Americans Act (OAA), a caregiver is:

An adult family member, or another individual, who is an informal provider of in-home and 

community care to an older individual or to an individual with Alzheimer’s disease or a 

related disorder with neurological and organic brain dysfunction (2016, 2018).

Informal caregiving occurs across a broad variety of settings in which the person receives care, and 

often requires caregivers to coordinate between multiple specialty providers; assist in transition in 

and out of hospitals, homes, and rehabilitation centers; and frequently continues up to placement of 

the recipient in a nursing home or in end-of-life care (Liu, Kim, & Zarit, 2015; Health and 

Medicine Division [HMD], 2016). Typical tasks include shopping, food preparation, 

housekeeping, transportation, and the administration of medication, as well as feeding, dressing, 

bathing, and assisting the care recipient in toileting. However, for high-need recipients, caregivers 

may also be called upon to perform medical and nursing tasks or make care decisions, with over 

three-quarters (77%) having reported navigating the care network on their care recipient’s behalf, 

and nearly a quarter (23%) being responsible for making all care decisions for their loved one 

(HMD, 2016b).

The role of informal caregiver is one that individuals may assume gradually as they recognize a 

recipient’s need for support, or they may be suddenly required to step into the caregiving role 

following a crisis event such as a heart-attack or stroke (HMD, 2016a). While there are common 

trends in the experiences of informal caregivers, there are numerous variables that affect the 

trajectory for the provision of long-term informal care. As care recipients become increasingly frail 

or impaired, the caregiving role expands accordingly. If the periods of disability experienced by 

recipients are episodic, caregiving may occur in high demand over a short period, or may ebb and 

flow with the recipient’s needs (Gitlin & Wolff, 2012; Zarit & Zarit, 2015; HMD, 2016).

Over 72 percent of all caregivers using NFCSP are female (ACL, 2017a).There is evidence to 

suggest that caregiving tasks vary by gender, with female caregivers more likely to assist in the 

most difficult physical tasks such as bathing and dressing, while male caregivers are more likely to 

help in areas of finance and care coordination (HMD, 2016b). Nationally, the average age of 

caregivers is 49 years, with 48 percent of caregivers falling between the ages of 18 and 49, and 19 

percent above the age of 65 (AARP & NAC, 2015). Most caregivers using NFCSP identify as 
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White (74 percent), followed by Black or African American (18 percent), and 10 percent of 

caregivers identify as Hispanic or Latino. Over 95 percent of caregivers care for a relative or a 

loved one, with 42 percent caring for a spouse and 45 percent providing care to a parent or in-law 

(ACL, 2017a).

There are far more informal caregivers in the United States than direct-care workers. Current 

estimates indicate that the aging U.S. population is rapidly outpacing the availability of informal 

caregivers, increasing dependence on an already strained direct-care workforce. By 2030, the 

number of people 65 years or older is expected to double, and the number of potential family 

caregivers is projected to drop from seven to four per adult aged 65 or older (IoM, 2008; Centers 

for Disease Control and Prevention [CDC], 2018). As of 2015, there were an estimated 43.5 

million informal caregivers providing supports to adults or children in the U.S. Approximately 

39.8 million of these caregivers provide care to adults with a disability or long-term illness (AARP

& NAC, 2015). The majority of caregivers (78 percent) provide care and support to a single adult, 

13 percent for two adults, and nine percent for three or more adults (ACL, 2017a).

III. Impacts of Family Caregiving

Care recipients generally report a high degree of satisfaction with the supports and care received 

from family and friends, and informal caregivers are broadly viewed as more responsive and intune with recipients’ needs than paid assistance (IoM, 2008). This view is further validated by 

evidence indicating that informal caregiving, and family participation in care more broadly, may 

improve care outcomes for the care recipient, including reduced usage of emergency services and 

delayed placement in institutionalized care (Miller & Weissert, 2000; Liu et al., 2015). The 

availability of family caregivers is associated with: shorter hospital stays; lower risk for depressive 

symptoms; improved care recipient satisfaction; and, in some cases, a reduced rate of mortality 

following a significant health shock that required hospitalization (Picone, Sloan, Chou, & Taylor, 

2003; Allen, Hutchinson, Brown, & Livingston, 2014).

While care recipients experience significant positive benefits of informal care, the significant 

demands of providing supports to loved ones can produce detrimental physical and emotional 

effects on family caregivers. These effects are dependent on factors such as the extent of the 

recipient’s disability and/or health conditions, the duration of care provided, the level of 

oversight and attention involved in care, and the living arrangement between the recipient and 

the caregiver, such as cohabitation (Schulz & Sherwood, 2008; Liu et al., 2015). Conditions 

requiring high intensity and high frequency care, such as dementia, are linked with the most 

negative caregiver outcomes with respect to higher rate of physical illness, and increased 

incidence of depression and stress (Schulz & Sherwood, 2008; Vitaliano, Zhang, & Scanlon, 

2003; Liu et al., 2015). Evidence suggests that older caregivers, caregivers with a spousal 

relationship to the recipient, and female caregivers are most likely to report low ratings of 

emotional well-being; a key factor in these associations is caregiver perception of how much the 

recipient is suffering (Schulz & Sherwood, 2008).

It is important to note that there are also positive effects of caregiving. Caregivers report that aiding 

the recipient often instills a sense of confidence, provides them with the tools to address 

emotionally difficult situations, strengthens the bond between caregiver and care recipient, and 
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gives the caregiver peace of mind with respect to the quality of care and assurance of recipient 

needs being met (Liu et al., 2015; HMD, 2016). Negative psychological outcomes can coexist with 

positive outcomes, and are not mutually exclusive; the increased stakes of the relationship may 

actually strengthen the known benefits of supportive relationships in living longer and healthier 

lives, as opposed to those living in relative social isolation (Schulz & Sherwood, 2008).

Caregiving can be a time-intensive responsibility, and its impact felt more broadly in the social 

interactions of caregivers. Caregivers commonly report limitations on their time and energy for 

maintaining social networks and participating in activities that caregivers enjoy, including reduced 

participation in visiting with friends and family, attending religious services, and going out for 

dinner or entertainment (HMD, 2016a).

Caregiving can also have financial implications for the provider. Nationally, sixty percent of 

caregivers were employed at some point during 2015 while providing care; over half of these 

caregivers were employed full-time. Seventy percent of working caregivers report work-related 

difficulties as a product of juggling the competing roles. Sixty-one percent of working caregivers 

report having to rearrange their work schedule, decrease their hours, or take unpaid leave from 

work in order to provide adequate care to their loved one (AARP & NAC, 2015). The financial 

burden of caregiving is exacerbated by a decline in work-life productivity and a loss of wages. 

Reports from 2010 indicate that 10 million caregivers over the age of 50 lost an estimated $3 

trillion in wages, pensions, retirement funds, and benefits (MetLife, 2011). Women are more likely 

to experience these strains, and leave the workplace at higher rates than men in order to focus on 

their caregiving role. Long-term caregiving is also linked to higher rates of poverty and lower rates 

of higher educational attainment (Gardiner, Brereton, Frey, Wilkinson-Meyer, & Gott, 2013).

Financial and scheduling burdens of caregiving contribute to increased stress and negative 

emotional outcomes for caregivers (Schulz & Sherwood, 2008; Gardiner et al., 2013).

IV. The OAA and NFCSP

In 1965, in response to gaps in community supports for older persons, Congress passed the Older 

Americans Act (OAA), which established federal grants for community planning and social 

services, research projects, and training for personnel in the fields of aging and disability 

(Administration for Community Living [ACL], 2017a). In addition to establishing the 

Administration on Aging (AoA) to administer its grant programs, the OAA is considered the 

primary vehicle for the organization and delivery of social services to older Americans and their 

caregivers (ACL, 2017b).

The National Family Caregiver Support Program (NFCSP) was established in 2000 to provide 

grants to states and territories to fund support programs to assist informal caregivers in caring for a 

recipient in the home (ACL, 2017c). The NFCSP provides grants for five types of services: (i) 

informational resources to caregivers about available services; (ii) assistance to caregivers in 

accessing services; (iii) individual counseling, support groups, and caregiver training; (iv) respite 

care; and (v) supplemental services, on a limited basis (ACL, 2017c). NFCSP directs State Units 

on Aging (SUAs) to work in partnership with Area Agencies on Aging (AAAs) to provide 

comprehensive information on the array of services provided through NFCSP funding, as well as 

those state programs that fall outside of its scope.
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Individual counseling and support group programs funded through the NFCSP vary by state, in 

part because the ACL does not impose programmatic requirements. Not all support groups or 

counseling programs provided through AAAs receive funding through the NFCSP, as AAAs may

incorporate existing local services instead of creating new programs from the ground up. Some 

AAA programs may provide grief management or end-of-life counseling, and family counseling. 

The NFCSP also funds trainings, including evidence-base interventions to help caregivers attend to 

the stress of caregiving (Link, 2015/2016). Respite care programs provide trained caregivers to 

attend to a recipient’s needs and perform care activities, in either a planned or emergency capacity, 

providing temporary relief for the primary caregiver to attend to their own needs. These services 

are primarily provided in a home setting, but can also occur through adult day care centers and 

overnight residential facilities (ARCH National Respite Network and Resource Center, 2018).

In 2016, with a budget of slightly over $150 million, NFCSP provided support services to over 

190,000 individual caregivers. This included 61,989 caregivers who received respite services, as 

well as 120,100 individuals who received counseling. The ACL further reached nearly 20 million 

caregivers with their informational services, and provided nearly 1.2 million contacts to caregivers 

seeking services through its access assistance program (ACL, 2017a; ACL, 2018). In 2016, an 

evaluation by the ACL of NFCSP implementation found that NFCSP is the primary or only source 

of caregiver support provided through AAAs in nearly 75 percent of service areas. Results also 

indicated that, in states which had established caregiver programs prior to the NFCSP, the number 

of caregivers served increased substantially after implementation (The Lewin Group, 2016).

V. Bereaved Caregivers

The reach and efficacy of NFCSP services noted above assumes typical caregiving conditions and 

experiences, and gaps in the supports provided may exist as recipients’ health decline and in the 

period following the death of the care recipient. The ACL is currently evaluating how caregivers 

interact with NFCSP services in order to help their network better serve family caregivers. In the 

course of the outcomes evaluation, the ACL encountered family caregivers whose caregiving was 

ended by the loss of their care recipient. The ACL recognized an opportunity to gain retrospective 

insight into the caregiving experience, which might provide an opportunity to refine programs, 

shape outreach, and better understand the evolving needs of family caregivers, particularly as their 

recipients’ progress into the end-of-life phase of care. This expansion of the outcomes evaluation 

also provides an opportunity for caregivers to share with current and future caregivers the wisdom 

gained through their experiences. Demographic data from a sample of 46 caregivers whose care 

recipient passed away during the course of the ACL’s NFCSP outcome evaluation are presented 

below to contextualize the population of interest.

Caregivers from this sample were predominately female (85 percent), and between the ages of 47 

and 88, with a mean age of 69 years. Half (50 percent) of caregivers reported having a spousal 

relationship with the care recipient, and 41 percent responded that they were caring for a parent. Of 

the 19 children caring for an aging parent, 18 were the daughter of the recipient. Eighty-three 

percent of caregivers identified as White, 15 percent as Black or African American, and two 

percent reported another racial identity. Nearly a quarter (24 percent) of bereaved caregivers 

reported current full- or part-time employment. Respondents report caring for the recipient for an 

average period of seven years, with answers ranging from one year of care to a period of 25 years.
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What social and economic factors enable or predispose caregivers, particularly bereaved 

caregivers, to utilize supports and services represents a gap in the currently available literature.

Informal caregivers are more likely than non-caregivers to be of a low socioeconomic status and 

to have a lower educational attainment. Twenty percent of Americans with a high school 

education or lower will take on the caregiving role in their lifetime, compared with 15 percent of 

college graduates and 16 percent of postgraduates. In addition, 47 percent of caregivers have an 

annual household income under $50,000, with a median income of $54,700. For African 

American and Hispanic caregivers, the frequency of household income below $50,000 increases 

to over 61 percent (AARP & NAC, 2015). Informal caregivers also appear to be at a higher risk 

for certain health risk behaviors, including substance abuse, sleep problems, poor diet, and 

smoking (Vitaliano et al, 2003; HMD, 2016b). Furthermore, it is understood that caregivers 

participate in fewer social activities and are less engaged in their own health care and wellbeing 

(HMD, 2016a; HMD, 2016b; Gitlin & Wolff, 2012).

Caregivers who exhibit health risk behaviors associated with stress stand to benefit from programs 

which reduce the burden of care, or alleviate some of the expectations that caregivers may feel are 

placed on them. Trainings and education on providing care and accessing the health care delivery 

system can help equip a caregiver without prior health care experience to better handle the medical 

realities and needs of their care recipient. Support groups and respite care both serve to increase a 

caregiver’s opportunities for social interaction and recreation. Finally, assistance in coordinating 

and balancing the caregiver’s health needs helps to ensure that caregivers do not neglect 

themselves in the course of caring for their loved one (Adler et al., 2016; HMD 2016b). The full 

impact of these services in addressing utilization of services is presently unclear, as is the 

perspective of bereaved caregivers on the need for these supports, or other similar services.

End-of-life care is an especially complicated period for caregivers, both in terms of the increased 

physical demands of caregiving and in the emotional impacts of providing care to a dying loved 

one. There are relatively few studies on the end-of-life phase of caregiving, and those that exist 

indicate that caregiving demands become more urgent and intensive during this period (Schulz & 

Sherwood 2008; Chi, Demiris, Lewis, Walker, & Langer, 2015; HMD, 2016b). During this time, 

caregivers continue to report high levels of burden and stress, but also report a greater degree of 

meaning or purpose experienced as a product of providing care (HMD, 2016b; Nielsen, Neergaard, 

Jensen, Bro, & Guldin, 2016). Approximately 70% of all deaths in recipients with terminal 

conditions involve chronic, deteriorating conditions such as cancer, dementia, or organ failure, 

confronting the caregiver with a loved one’s deterioration and the uncertainties of the future 

(Nielsen at al., 2016).

Losses during this period of illness are most likely to cause grief, and caregivers are most at-risk 

for psychological distress during this time. During bereavement, there is significantly increased 

incidence of depression, anxiety, and complicated grief; a condition characterized by intense 

yearning for the deceased and impairment of daily life lasting for more than six months after the 

death (Chi et al., 2015; Nielsen at al., 2016). There is some evidence to suggest that caregiving 

during the period antecedent to the recipient’s death may help transition out of the grief period 

more quickly and with lower stress levels than non-caregivers, but there is not extensive support 

for this effect in the literature and this effect, dubbed “forewarning” or “anticipatory grief”, is not 

well-understood (Nielsen et al., 2016). 
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VI. Access and Usage of Support Services by Bereaved Caregivers

There is a paucity of literature on the usage of support services by caregivers in the periods leading 

up to and immediately following a recipient’s death. The statistics presented below are drawn from 

the sample of 46 bereaved caregivers identified during the ACL’s NFCSP outcome evaluation. In 

this sample of caregivers, nearly 48 percent reported receiving respite care in the 6 months prior to 

the recipient’s passing, at nearly 10 hours each week on average. In the 6 months prior to the 

recipient’s death, only 17 percent of these caregivers report receiving caregiver education, 

counseling, or support group services. One interpretation of the data would suggest that the 

increased demands during this period of care incite a greater need for time away from the 

caregiving environment, but a barrier to seeking emotional and social supports. It is important to 

note that these questions had an approximately 30 percent non-response rate, and may not be fully 

generalizable.

Contrary to the intuitive expectation that a sudden loss is more difficult to cope with, in 2016 

Nielsen et al. found that prolonged periods of anticipatory grief indicated greater risk for 

complicated grief and post-loss depression, suggesting that prolonged decline is a significant factor 

in predicting difficult bereavement. A low preparedness for death, defined loosely as the lack of a 

strong network of social supports, was also strongly linked to difficult bereavement; given the 

extremely low utilization of counseling and support group services by the sample of bereaved 

caregivers in the months leading up to the recipient’s passing, it is possible that that caregivers are 

poorly equipped to handle the death of their loved one, and may need additional supports in this 

area to better cope with their loss (Gitlin & Wolff, 2012; Chi et al., 2015; Nielsen et al., 2016).

VII. Unmet Needs of Bereaved Caregivers

As discussed earlier, bereaved caregivers exhibit a low utilization of support group and individual 

counseling services in the months leading up to the recipient’s death. These services are integral to 

a caregiver’s preparedness for bereavement, and a low usage is predictive of complicated grief and 

depression (Garrido & Prigerson, 2014; Nielsen at al., 2016). However, these services may already 

be provided under the NFCSP, and low utilization is suggestive instead of secondary barriers to 

access, such as the high demands of end-of-life caregiving leaving little time for a caregiver to seek 

out personal supports, or a general low-attractiveness of these services. It may therefore be 

necessary to increase educational supports to caregivers in planning for the inevitability of end-oflife care, and instituting programs to help caregivers actively identify their own needs as they 

develop (Garrido & Prigerson, 2014; Aoun et al., 2015; Nielsen et al., 2016).

One tool that has been developed for this purpose in Australia is the Carer Support Needs 

Assessment Tool (CSNAT), which facilitates the assessment of caregiver need for supports in the 

physical, psychological, social, practical, financial, and spiritual domains of palliative home care 

(Aoun et al., 2015). The tool takes a screening approach designed to identify the supports and 

services a caregiver needs to (i) continue providing care to the recipient, and (ii) care for their own 

wellbeing and emotional wellness. One of the key dimensions of success for the CSNAT were high 

reports of increased caregiver awareness of their emotional needs in the end-of-life phase of care, 

coupled with a broadly reported sense of empowerment and validation in seeking social and 

counseling supports (Aoun et al., 2015). Another key outcome from the implementation of the 
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CSNAT was increased integration of the family caregivers with the broader medical care team, 

which decreased perceptions of social isolation, and increased reports of self-care among 

caregivers (Aoun et al., 2015).

While there is a scarcity of literature documenting the effects of specific disease diagnosis and 

progression, as well as the relationship between caregiver and recipient, on the utilization of 

support services, certain trends in physical and emotional demands are recognized. The prolonged 

periods of decline common to cancer and dementia diagnoses are linked to both higher physical 

demands in caregiving, and greater emotional strain and stress on the caregivers (Vitaliano et al., 

2003; Schulz & Sherwood, 2008; Kim et al., 2018). Evidence also indicates that older caregivers, 

and those with a spousal relationship to the recipient, are at increased risk for stress and related 

physical and mental health conditions (Schulz & Sherwood, 2008; Kim et al., 2018). 

The results of this study of bereaved caregivers will help identify gaps in existing services, as well 

as provide insight in how caregiver perceptions of services provided throughout the caregiving 

trajectory, including during end-of-life care, affect utilization. These results will help shape our 

understanding of family caregiving, and the preparatory work and supports that caregivers require 

to cope with bereavement in a healthy manner.

VIII. Methodology 

This small, qualitative study of bereaved caregivers included a potential pool of 46; the final 

number who self-selected and agreed to be interviewed was eight. The study aimed to examine and 

understand the bereaved caregivers’ usage of the caregivers support services and any identified 

gaps in services provided. The research team initially developed an interview guide protocol (see 

Appendix I) based on the literature review and analysis of aggregated characteristics of caregivers 

(CG) with a deceased care recipient (CR) included in the outcome evaluation but who did not 

complete 12-month interviews. Through these interviews, we aimed to gather information on the 

service components/needs of bereaved caregivers who agreed to participate in a telephone 

interview. The information gathered is intended to afford local service providers, Area Agencies on 

Aging (AAAs), State Units on Aging (SUAs), and the Administration on Aging (AoA) insights for 

supporting individuals at all stages of the caring process.

Westat, the contractor responsible for conducting the outcome evaluation, notified bereaved 

caregivers about the bereaved caregiver study opportunity and ten bereaved caregivers notified

Westat of their interest in participating in the study. Lewin then notified each of the caregivers in 

writing about the study along with expectations: 60-minute telephone interview, ensure 

confidentiality, participation is optional, expect a call within one week of letter receipt to schedule 

the interview, and a $50 gift card upon completing the interview. Lewin then contacted the 

bereaved caregivers to schedule interviews. Through this outreach process, one of the caregivers 

decided not to proceed and another caregiver was not reachable. Lewin conducted eight interviews 

with caregivers who granted permission. All interviews were recorded, as permission to record was 

granted by each caregiver. During the interviews, one individual from the research team conducted 

the interview according to the semi-structured interview guide protocol and another individual was 

listening to the interview and taking notes. Lewin adapted each interview protocol in order to avoid 

redundancy in information already accounted for and available from the Westat data. Subsequent 
10

to conclusion of all interviews, Lewin partnered with a transcription service entity, FEM, Inc., to 

have each of the telephone recordings transcribed. 

A. Qualitative Data Analysis – Stratifications 

Stratifications for the qualitative data analysis were based on the literature review and include the 

following:

 Caregiver relationship to care recipient 

 Caregiver gender 

 Caregiver age 

 Rural vs. urban setting

 Social Determinants of Health (SDOH) of caregivers – education level, socioeconomic 

status, and health status

 Living arrangement of caregivers and their care recipient 

 Length of time caregiving/length of time receiving services 

 Types of services received through the NFCSP 

 Types of services received through other state or local entities

 Access to services – including information provided about or transportation to services

 Perception of available services

IX. Coding and Analysis 

Upon receipt of interview transcripts from FEM, Inc., Lewin coded each interview transcript in the 

ATLAS.ti 7.0 (ATLAS) software, a dedicated qualitative analysis tool which allows for desired 

information to be extracted from the collected data and analyzed for trends and other predominant 

themes or interrelations. Lewin utilized grounded theory and constant comparative methods in 

order to develop the themes used to compare output from each interview. Each theme was 

categorized and assigned a main tier code. Each tier code was then structured in a nesting format 

for comparison at multiple levels of granularity. Lewin ensured that each interview transcript was

reviewed by two individuals to ensure consistency of method and analysis. Appendix II, Exhibits 

1 - 5 detail the codes and definitions used during analysis in ATLAS. 
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X. Results 

A. Demographic Data

The participants in the NFCSP Bereaved Caregiver Study were recruited as part of a volunteer 

sample of limited size. To estimate generalizability of the results of this study, researchers 

compared demographic data collected through the interviews of eight caregivers against population 

data published by the National Alliance for Caregiving and the AARP (2015). All demographic 

data collected for the purpose of this study is included in Table 1.

Table 1 – Demographic Data of Caregivers and their Care Recipients

Field Study Sample Population

CG Race 100% White 62% White

CG Gender 100% Female 75% Female

CG Age 67.6 Years 49.2 Years

CG Employment 75% 60%

Years as CG 4.5 4

CR Race 100% White No data

CR Gender 37.5% Female 65% Female

CR Age 79.6 Years 69.4 Years

B. Services Accessed by Caregivers

Based on the results of the interviews conducted, caregivers had a tendency to access a similar 

array of services while providing care to their loved ones. The most commonly accessed services 

were respite care and informational/educational opportunities.

 Respite Care: 7 caregivers

 Informational/Educational: 6 caregivers

Services with a moderate degree of access included home health care, individual counseling, 

support groups, and non-care companionship services.

 Home Health Care: 5 caregivers

 Individual Counseling: 5 caregivers

 Support Groups: 4 caregivers

 Non-Care Companionship: 3 caregivers
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The least accessed services included transportation, financial aid, nutritional programs such as 

Meals on Wheels, and supplemental services (one caregiver received assistance setting up her 

husband’s Emergency Response System (ERS)).

 Transportation: 2 caregivers

 Financial Aid: 2 caregivers

 Nutritional Programs: 2 caregivers

 Supplemental Service: 1 caregiver

C. NFCSP Services vs. Non-NFCSP Services 

The sources through which these services were provided and accessed also varied between 

caregivers. A multitude of the services utilized by caregivers were funded through the NFCSP. 

There were a total of 17 reported instances of service accessed through NFCSP-funded programs, 

with a median 2.5 NFCSP services accessed per caregiver within a range of 0 to 4 services. The 

most common services to access through the NFCSP were:

 Informational/Educational: 5 caregivers

 Support Groups: 3 caregivers

Services provided through a hospice program were the next most common for caregivers to access. 

There were 11 reported instances of services provided through local hospice programs, with a 

median 0.5 services accessed per caregiver within a range of 0 to 4 services. The most common 

services to access through the hospice were:

“I was going through all of the different services, Medicare plans, prescription plans that were 

available in the area, and I came across this one and I thought, oh, okay, this sounds really interesting 

and I don't know all that much about it. So, I called and found out that my husband would fit into the 

program perfectly, and so we began doing all the paperwork getting him eligible for it. They were just 

wonderful. That’s how I found out.”

“But, they had that and they even offered somebody to come, like an art person, a craft person. They 

had somebody to maybe come and exercise with the person. This was over and above the homecare, 

which is what that one woman did and it was explained to me that a lot of people regard the homecare 

people and let’s back up, before my mom needed hospice, people regard the homecare people as maid 

service and it was explained to me that that’s not what it is, they can do some light things but they’re 

there to, like companionship, to help with bathing but they’re not there to scrub the woodwork and do 

all that, just light stuff.”

“I took one at a visiting nurse association on how to do safe transfers. As a caregiver, how do you help 

someone go from a chair to sitting to standing? And they had some equipment that they showed, like 

some kind of a belt that you can put on someone that you can hold them from behind safely. Ramps, 

how to use portable ramps, where to buy portable ramps. So the training stuff was good. I never used 

any support groups or counseling, but the information stuff, yeah, I got a great use of that.”
Final Report OPE Bereaved Caregiver Study

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 Individual Counseling: 5 caregivers

 Respite Care: 3 caregivers

Volunteer and community-organized services experienced a median level of access among this 

sample. These programs include support groups organized through churches and social media, and 

companion and respite services provided by volunteer organizations. There were 7 reported 

instances of services accessed through these programs, with a median of 1 service accessed per 

caregiver across a range of 0 to 2 services. The most volunteer services accessed through volunteer 

or community programs were:

 Support Groups: 3 caregivers

 Respite Care: 2 caregivers

 Non-Care Companionship: 2 caregivers

One caregiver accessed several services through the Programs of All-Inclusive Care for the Elderly 

(PACE), which provides comprehensive medical and social services to certain frail, communitydwelling elderly individuals, most of whom are dually eligible for Medicare and Medicaid 

benefits.

1 The services accessed through this program included:

 Home Health Care

 Respite Care

 Transportation

 Individual Counseling

Only one caregiver reported accessing services through stand-alone, private pay programs. These 

programs include any not provided through NFCSP funding or affiliated with a hospice or hospital. 

The services accessed through these private pay programs were:

 Home Health Care

 Respite Care

 Cleaning Service

 

1

Information related to the PACE program can be accessed here: 

https://www.medicaid.gov/medicaid/ltss/pace/index.html

“I was able to get like someone to clean [my mother’s] house every other week. But again, that was 

private pay. And so basically, everything I did was mainly private pay.”

“It was hard because we were forced to put [my husband] on Medicaid. Some places don’t take 

Medicaid and some places don’t like to if they can find them a better paying customer.”
Final Report OPE Bereaved Caregiver Study

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D. Circumstances Leading to Service Access

Caregivers reported accessing services at every stage in the care process. When caregivers were 

proactive about seeking help with their role, caregivers report that their first steps were often to 

seek information through online resources and AAAs to better understand their loved ones’ 

illnesses, as well as what support options were available to them. However, these caregivers were 

of the minority.

Most caregivers reported that they did not ask for help soon enough in the process, and became 

aware of services over time as the need for support increased. This second group of caregivers was

more likely to report finding out about services through support groups and hospice programs, after 

they had already served as caregivers for several years. Those caregivers who learned of program 

options later in the caregiving experience were less likely to engage with services and supports, 

and were more likely to report doing so only after they had already experienced extreme stress and 

periods of high need.

Caregivers who accessed services earlier in the experience reported feeling more supported, and 

reported a higher degree of satisfaction with services, compared with those who did not begin 

engaging with services until their recipient declined to the point of requiring hospice care. 

E. Program Quality

Caregiver perceptions of program quality varied widely, although these differences appear to be 

associated with three factors. The first, mentioned earlier, was the timing of program access. Those 

caregivers who accessed programs earlier in the process and were exposed to information about 

program availability sooner tended to have more positive perceptions of overall program quality.

The second dimension to perceptions of program quality was the source of services and supports. 

Those caregivers who received respite and home health services through hospice programs tended 

to report lower levels of program satisfaction than those who received similar services through 

NFCSP-funded services or volunteer programs. This dimension of program quality is partially 

conflated with the first, however, as those caregivers who accessed services later in their 

recipients’ decline were more likely to access a majority of their services through hospice.

“[A representative from the AAA] brought me a book on Alzheimer’s care and it was supportive and 

had great suggestions. Often they weren’t helpful because every person is so different. They were 

helpful; there was a lot of good helpful things. But, the one thing, Alzheimer’s people just, it seems 

they’re always changing just when you get one thing down then they change and you have to approach 

things in a different way.” 

“I could contact them, anytime, 24/7, but they did have a nurse on call always. She or he would come 

at least once during the week and I usually saw one on the weekends. They had a young gal come in 

and bathe him, because he didn’t want me doing it and he got very irritated towards the end if I was 

doing it, so that really helped.”
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The final factor of greatest impact on perceptions of program quality is the location in which 

services were delivered. Those caregivers who accessed services in rural settings were less likely 

to know what services were available to them, accessed fewer services, and reported lower 

satisfaction with the services provided. Several factors that may contribute to this effect are the 

tendency for rural areas with fewer people to receive lower funding for government programs, and 

a limited infrastructure and fewer qualified individuals to support those programs.

F. Advice to Caregivers

The caregivers interviewed by the research team were eager to provide advice to current and future 

caregivers to help ease the burden and make the experience more manageable. The universal theme 

was clear: ask for help early and ask for it often. Caregivers who sought assistance and supports 

earlier in the process reported finding the experience to be more manageable than those who did 

not engage with services until later on in their loved 

one’s decline.

Among the benefits cited by caregivers were having a 

more positive outlook and experiencing less stress, 

experiencing fewer interruptions in daily life and having 

more time to take care of their needs, and being a more 

effective caregiver for their loved ones. Even caregivers 

who described themselves as having a hard time asking 

for help stated that they could not imagine trying to go 

through the caregiving experience alone, and it was 

common to report a regret over not asking for help or 

seeking out services sooner.

The second major advice theme emerging from caregivers was also universal: find time for 

yourself. The literature tells us, and caregivers confirm, that the caregiving process is physically 

demanding and emotionally draining. Caregivers who made frequent use of respite and home 

health services reported more positive caregiving experiences, superior emotional and physical 

health, and were more likely to access some form of support group compared with those who did 

not use respite or waited until hospice.

“Family has baggage that comes with it, but that doesn't mean that you can't have other people who 

can be really helpful and supportive. My mother's best friend, who has died, her daughters so 

appreciated all the kind things my mother had done for their mother. And when my mother got sick, 

they would call and they would come and say, gee, Bev, we're going to be in town, can we visit mom, 

can we pick this up for your mom. And I knew...I don't think I ever called on them, but I knew if I 

needed them to come and help me take her to the doctor or something, they would have been there in a 

way that my sister, who had my conflicted feelings, maybe would not have been. So yeah, I think it's the 

most important thing you can do is ask and reach out to people. People really are very kind.” 

“...Except it was more stressful. I had a lot of frustration just because I was just at times overwhelmed 

with everything.”

From Caregivers to 

Caregivers

Ask for help early and often. 

Don’t be afraid to reach out to 

friends and family for support, 

and engage with services early 

on to get a feel for how the 

Aging Services Network can best 

support you and your loved one.
Final Report OPE Bereaved Caregiver Study

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G. End of Life and Bereavement

A common element to all caregivers interviewed was the loss of their care recipient, but each 

individual’s experience of bereavement was unique. It can be difficult to quantify what is meant by 

bereavement, because the grieving process is so different for each person. From the literature, we 

know that grief, as it relates to mourning, begins as soon as there is acknowledgement that the care 

recipient is unlikely to recover and survive. This change in outlook is generally preceded by a 

marked decline in the recipient’s condition, and the beginning of the end of life phase.

Unsurprisingly, caregivers did not continue to 

receive respite or home health services after the 

death of their loved ones. Those who were receiving 

companionship services – whether or not it was 

provided under the NFCSP – tended to report 

several further interactions after their recipient 

passed, but all discontinued these services within 

the first year after their care recipient’s passing.

Caregivers who were already participating in a 

support group at the beginning of the end of life 

phase continued to participate, and were likely to 

report continuing to attend after their loved one’s 

death. One caregiver reported joining an additional 

support group specific to bereaved caregivers that she found online through social media, after her 

care recipient passed away. Of the caregivers who did not participate in a support group prior to 

their care recipient’s death, none reported joining a support group after the death of their care 

recipient.

Conversely, caregivers universally did not engage with any individual counseling services until 

their recipient entered the end of life phase, typically indicated by a move to hospice care. During 

this time, five of the eight caregivers interviewed began seeing a grief counselor, all of which were 

provided by their hospice.

Caregivers who did not make use of individual counseling reported being aware that counseling 

services were available, but expressed a belief that counseling would not be of particular benefit to 

them in their grieving process. In one instance, a caregiver expressed that they were not ready to 

participate in bereavement related support groups or counseling due to not having fully coped with 

the quality of medical care provided by the hospital and their primary care physician to their care 

recipient prior to death. 

From Caregivers to 

Caregivers

Find time to focus on you. It can 

be difficult to find time for 

yourself while caring for a loved 

one, but taking breaks to stay 

active and engage socially can 

help you maintain your health 

and continue delivering the best 

care. 
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H. Program Quality

Caregivers reported a high degree of satisfaction with the 

support groups in which they participated, particularly 

those organized through the community such as through 

their local church. Caregivers did not report any negative 

opinions of the individual counseling services that they 

received, although they were less likely to claim any 

particular benefit compared with reports of support group 

performance.

I. Advice to Bereaved Caregivers 

The interviewed caregivers also offered advice to current 

and future caregivers regarding the bereavement period. 

Every single caregiver stressed the importance of having 

a support network to help them through their grief; all 

recommended keeping family and friends close and not hesitating to lean on them when needed. 

Many of the caregivers highlighted the importance their faith played in grief management, and the 

significant role their community played in supporting them.

Caregivers recommended to their peers to plan ahead and get started on estate planning early. The 

caregivers who reported delaying preparations of their loved one’s estate emphasized that planning 

ahead does not mean that the caregiver is giving up on their loved one’s recovery. Rather, it can 

actually ease the loss when it does occur, both through reducing the stress of funerary planning and 

through the comfort of already having executed a plan with clear direction in place.

Finally, caregivers recommended that others in their position make an effort to stay active, eat 

well, and get involved in their local community. By staying physically and socially active, 

caregivers reported more positive outlooks on the caregiving and grieving periods, as well as better 

overall health outcomes. Specific recommendations included returning to work, joining a gym, and 

getting involved in community service and volunteer organizations.

“I had called an elder law attorney and talked with her shortly before [my husband] died. We never 

really got to finish up, but I don't think even that alone would have been enough. (Inaudible) thinking 

about the house insurance, but as you start to think it through, there are lots of practical things that the 

person left behind is going to have to deal with.”

“After she passed? I wish I could have had... how do I put this? I wish I could have had like a list 

from someone as to what things to consider that might have needed to be done. She was very elderly. 

So what I needed to do to stop Social Security, stop her health insurance. Stop all these things that 

she was involved in. I think maybe something to put my hands on to say, this way, you're not going to 

forget anything.”

“I think for caregivers, I think they need more of that because they really do feel like they’re out there 

by themselves and nobody really cares.”

From Caregivers to 

Caregivers

You aren’t alone in grieving. 

Whether you seek out family, 

friends, or a community or faith 

group, establishing a personal 

support network is a healthy 

step in the grief process. Find 

those you can lean on, and who 

will celebrate the life of your 

loved one with you.
Final Report OPE Bereaved Caregiver Study

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XI. Conclusions and Recommendations 

The results outlined in the previous section provide detailed information gathered from the eight 

caregivers interviewed as part of this study. Based on these findings, it is clear that while the 

majority of caregivers accessed support services, not all of these services were funded by NFCSP, 

and this may be due to their lack of information surrounding service availability. Based on the 

feedback received, caregivers who did receive information about NFCSP services received this 

information late in their caregiving experience and therefore felt that this information was not 

tailored to their current needs, or would have been useful earlier in the process.

Several caregivers expressed their desire for access 

to disease-specific information in order to provide 

daily, in-home medical care for their care recipient 

without having to rely solely on home health care 

service providers. These caregivers did not feel 

completely prepared or confident in their ability to 

meet the daily medical needs of their care 

recipient. They expressed a desire for more 

medical education trainings and information on 

how to assist their loved one with ADLs and 

IADLs. Additionally, caregivers also expressed a 

desire for access to more frequent respite services 

with longer duration periods. 

As we know from the literature, caregivers who access support programs and individual counseling 

tend to report less stress and experience healthier grieving periods. It is interesting to note that 

caregivers who reporting accessing support groups did so exclusively through NFCSP-funded 

services and community-organized groups, while those who accessed individual counseling did so 

exclusively through their hospice program. This may suggest that caregivers are unlikely to 

reengage with NFCSP services once their recipient has reached the end-of-life phase or deceased, 

and that the immediate availability of hospice grief services makes them more appealing or 

accessible to caregivers. Additionally, it is important to note that some SUAs, AAAs, or service 

providers may have policies in place that terminate OAA service coverage when hospice care 

begins, which may also explain why caregivers did not return to NFCSP services.

Finally, all of the caregivers interviewed expressed their regret over not asking for help sooner. 

Providing information to caregivers early on in the process about the significant benefits of having 

a support system in place not only to aid in caring for their care recipient but also as an outlet for 

their own emotional well-being is critical. Additionally, those caregivers receiving information 

about NFCSP supports and services early in their caregiving experience were more likely to have a 

positive perception of NFCSP service quality. The caregivers who were not aware of the NFCSP 

services and supports expressed a desire to have been provided information about these services 

sooner or otherwise directed to these services earlier in their caregiving experience. 

From Caregivers to 

Caregivers

It is never too early to begin 

estate planning. Talking to your 

loved one about their wishes 

can be a difficult step to take, 

but having a plan in place will 

reduce the burden on you if the 

time comes to put it in action. 
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A. Recommendations to ACL and the Aging Services Network

Based on the above findings and conclusions, SUAs and AAAs should aim to ensure that 

information is disseminated within their local communities so that caregivers may access this 

information early in the caregiving process. Collaborating with other community organizations or 

programs and long-term services and supports (LTSS) funded through state or advocacy programs 

may be beneficial to ensuring caregivers are supported at all phases of the caregiving experience. 

Such partners include, but are not limited to such as the Alzheimer’s Association, American 

Cancer Society, faith communities, hospitals, and health plans. AAAs may also consider the 

development of caregiver fact sheets that offer information about services provided within their 

specific communities, with links to online resources. 

Many of the caregivers we spoke with expressed the need for access to respite services that 

included overnight or weekend care. Along with this, caregivers also stated they would appreciate 

the ability for longer periods of respite services. For example, in addition to offering respite 

services 2-3 days a week for two hours each day, perhaps 

offering 1-2 days a week for four hours at a time. 

Expanding availability of respite services may also 

encourage caregivers to make use of services such as 

support groups and individual counseling, as well as taking 

the time to maintain healthy behaviors, such as balanced 

diet and exercise. The most commonly cited barrier to 

engaging in self-care activities was the demanding 

schedule faced by caregivers and the perception that they 

could not take time to focus on themselves. States and 

AAAs may wish to examine their menu of available respite 

options to ensure that they offer maximum flexibility to 

encourage caregiver use of underutilized services. 

Another consideration is to enable and empower caregivers 

to seek advice and guidance from their peers. Several caregivers interviewed described positive 

experiences with seeking information and advice from other caregivers in similar situations, or 

with care recipients suffering from the same condition or illness. While no program currently 

exists, ACL may encourage AAAs and state agencies to implement programs that link caregivers 

so they may support one another through their similar experiences. Such agencies could apply local 

funding or NFCSP dollars to the development of a peer-to-peer support network. Another catalyst 

to drive this type of sharing and support is to encourage AAAs to maintain contact with caregivers 

who may wish to offer their insights and experience during structured, in-person learning 

opportunities, and to implement a periodic webinar or learning series to provide a platform for 

AAAs to share best practices and speak to their caregivers’ experience. A similar program, the 

Charting the LifeCourse Framework, is already implemented by the Administration on Disabilities, 

part of the ACL. The Framework was developed by families with experience navigating the health 

care delivery system in response to major life changes, and was designed to help individuals and 

families locate services and construct an informed plan for their care future. While it was originally 

developed to serve individuals with disabilities, it is a universally-designed framework and its 

expansion could further bridge the gap between aging and disability programs (University of 

Missouri, 2017).

From Caregivers to 

Caregivers

Keep busy and get involved. 

Other caregivers report eating 

well, staying active, being 

social, and getting involved in 

their community as ways to 

cope with their loss.
Final Report OPE Bereaved Caregiver Study

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Appendix I: Interview Guide Protocol 

Introduction

[The goal is to make the interview with the caregiver conversational while also hitting the key 

points for AoA. So, while the content below is scripted, we will adjust accordingly to make the 

caregiver feel comfortable.]

Hi, [insert CG name] thank you for agreeing to talk with us today. I am [Lewin name #1] from the 

Lewin Group. I want to spend a few minutes sharing some background information with you and 

describing the purpose of our call. Then we can hear more from you. Okay? 

Before we begin, I also want to introduce my colleague [Lewin name #2]. He/she will be taking 

notes and asking questions if I miss something important.

As part of our work with the Administration on Aging, we are speaking with bereaved caregivers 

like yourself. We are conducting this small study of individuals who participated in the recent 

“National Study of Caregivers Needs and Support.” You were part of this earlier study focused on 

your caregiving efforts, but were unable to finish because your [CR title/name] passed away. 

You expressed a desire to tell your “story” and we really appreciate your willingness to speak with 

us today. Do you have any questions at this time? 

Through these interviews, we want to understand more about the services you received and what 

additional services would have been helpful to you. The Administration on Aging wants to 

support individuals at all stages of the caring process. There are no right or wrong answers to these 

questions; we are interested in your perspectives and opinions. 

With your permission, I would like to record today’s discussion. This will allow us to really listen 

to you and not worry about taking notes. We will maintain the confidentiality of our conversation. 

We will not share identifiable information with anyone. We will summarize what you tell us and 

combine with other caregiver interviews. 

Do you have any questions before we begin? 

May we have your permission to record the discussion? [If yes, turn on recorder]
Final Report OPE Bereaved Caregiver Study

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A. Identifying Gaps in Support Programs and Services 

1. What supports or services were you offered while providing care to [CR title/name]?

a. What supports or services were the most helpful to you? Note to Interviewers: The 

subsequent response will require flexibility on our part. An example response could 

be: How frequently did you receive respite services? What circumstances led you to 

these services? How did the respite services help you? Did you need want more 

hours of respite services? If yes, how many more hours?

b. Other potential support services we are likely to hear about: support groups, 

individual counseling and caregiver training/education programs

2. Do you feel that you asked for help early enough in your caregiving experience? Why or 

why not? 

3. What supports or services do you feel would have been beneficial to you, but weren’t 

ever offered or available? When would it have been helpful to receive these services? 

(e.g., when my mother was discharged from the hospital). How frequently would 

receiving these services have been beneficial to you? (e.g., daily, monthly).

4. What supports were you offered after [CR title/name] passed away? 

5. What supports or services do you feel would have been beneficial to you after [CR 

title/name] passed away, but weren’t ever offered or available?

6. What piece of information would you like to share with current or future caregivers that 

would make their work as a caregiver more manageable?

7. What piece of information would you like to share with current or future caregivers that 

would make bereavement more manageable?

8. You are a caregiver who has experienced the death of your [CR title/name]. Given your 

unique experience, what are some key pieces of information that you would like to share 

with the Administration on Aging to make it easier for other caregivers? 

B. Use of NFCSP Services

1. The National Family Caregiver Support Program supports programs in local communities 

to assist caregivers like you. Some of the services include: (i) informational resources to 

caregivers about available services; (ii) assistance to caregivers in accessing services; (iii) 

individual counseling, support groups, and caregiver training; (iv) respite care; and (v) 

supplemental services on a limited basis. 
Final Report OPE Bereaved Caregiver Study

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2. When you were a caregiver did you utilize any of the services I just mentioned? (Y/N) 

If yes, which services did you use? 

a. Please provide details about these services. 

b. How long did you use these services? Did you use them prior to or following 

[insert CR title/name] death? 

c. What made you stop using the services? 

d. What recommendations do you have to improve the NFCSP services that you 

utilized?

If no, please explain why you did not use any of the mentioned support programs or 

services while you served as a caregiver. This may include any barriers or challenges you 

experienced with accessing services. 

3. Do you feel that your caregiver support needs changed over the course of your 

experience? 

a. If yes, how so? 

b. If no, thank you.

C. Demographic and SDOH Information

[In advance of each caregiver interview, we will pre-populate the questions with known 

information from Westat]. Other information will be populated during the interview.] 

1. What was your relationship to [CR title/name]? How long did you serve as a CG to [CR 

title/name]?

2. How long did [CR title/name] illness last prior to death? Was his/her death 

sudden/unexpected or gradual and anticipated? Are you comfortable sharing with me 

what [CR title/name] died from? 

3. [Hopefully we will know gender based on existing information]. What is your gender? 

How old are you? What is your race/ethnicity?

4. [Hopefully we will know gender based on existing information]. What was the gender 

of your [CR title/name]? How old was [CR title/name] at the time of his/her death? 

What was his/her race/ethnicity?

5. Did you live with [CR title/name] for the entire time that you were providing care? 

(Y/N). If no, did you live together at all? If yes, how long did you live together?

6. What state did you live in at the time you served as a caregiver?

a. Would you consider this location to be a rural or urban setting? 
Final Report OPE Bereaved Caregiver Study

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7. During the time in which you were a caregiver, were you working for pay either full- or 

part-time? (Y/N)

a. At any point while you were a caregiver, did you feel that you needed financial 

assistance in order to continue serving as a caregiver? 

8. What is your highest level of education?

9. We are interested in better understanding your health status during the time in which 

you served as a caregiver and after [CR title/name] died. 

a. What would you consider your health status to be during the time in which you 

served as a caregiver? Please pick from one of the following responses: Excellent 

Health, Good Health, Fair Health, or Poor Health. If the CG noted to be in “Fair or 

Poor Health” – can you provide an explanation as to why you chose this response? 

If the CG noted to be in “Excellent or Good Health” – can you tell us what you did 

to maintain your health while being a caregiver? 

b. What would you consider your health status to be after the passing of [CR 

title/name]? Please pick from one of the following responses: Excellent Health, 

Good Health, Fair Health, or Poor Health. If the CG noted to be in “Fair or Poor 

Health” – can you provide an explanation as to why you chose this response? If the 

CG noted to be in “Excellent or Good Health” – Can you tell us what you did to 

maintain your health after the passing of [CR title/name]?

10. During the time you served as a caregiver, how would you describe your emotional 

well-being?

a. Do you feel as though your emotional well-being declined as a result of [CR 

title/name] passing? 

11. We would like to close with four general questions.

a. Reflecting on your caregiving experience, is there anything else you would like to 

share with us?

b. Is there anything you would have done differently? 

c. If you have to offer advice to a new caregiver today, what would it be? 

d. Do you have any other information that you would like to share with us? 

[CG name], thank you so very much for talking with us today. We will mail you a $50 gift card 

later this week. Would you prefer a gift card to Walmart or Amazon? 
Final Report OPE Bereaved Caregiver Study

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Appendix II: Coding Methodology Exhibits

Exhibit 1 – Service/Support Code Tree
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Exhibit 2 – Program Success Code Tree
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Exhibit 3 – Program Challenge Code Tree
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Exhibit 4 – Program Recommendation Code Tree
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Exhibit 5 – Caregiving and Bereavement Code Trees
Final Report OPE Bereaved Caregiver Study

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References

AARP & the National Alliance for Caregiving (2015). 2015 Report: Caregiving in the U.S. Retrieved from: 

https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-reportrevised.pdf

Adler, N. E., Cutler, D. M., Fielding, J. E., Galea, S., Glymour, M. M., Koh, H. K., & Satcher D. (2016). 

Addressing Social Determinants of Health and Health Disparities. Vital Directions for Health and 

Health Care. Retrieved from: https://nam.edu/wp-content/uploads/2016/09/Addressing-SocialDeterminants-of-Health-and-Health-Disparities.pdf

Administration for Community Living. (2017). AGing Integrated Database (AGID). Retrieved from: 

https://agid.acl.gov/

Administration for Community Living. (2017). Older Americans Act. Retrieved from:

https://www.acl.gov/about-acl/authorizing-statutes/older-americans-act

Administration for Community Living. (2017). National Family Caregiver Support Program. Retrieved 

from: https://www.acl.gov/programs/support-caregivers/national-familycaregiver-support-program

Administration for Community Living. (2019). FY2019 Justification of Estimates for Appropriations 

Committees. Retrieved from: https://www.acl.gov/sites/default/files/about-acl/2018-05/FY2019ACLCJ3.pdf

Allen, J., Hutchinson, A. M., Brown, R., & Livingston, P. M. (2014). Quality care outcomes following 

transitional care interventions for older people from hospital to home: a systematic review. BMC 

Health Services Research, 14, 346. Retrieved from: https://doi.org/10.1186/1472-6963-14-346

Aoun, S., Deas, K., Toye, C., Ewing, G., Grande, G., & Stajduhar, K. (2015). Supporting family caregivers 

to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial. 

Palliative Medicine, 29(6), 508-17. Retrieved from: 

http://journals.sagepub.com/doi/pdf/10.1177/0269216314566061

ARCH National Respite Network and Resource Center. (2018). What is Respite? Retrieved from:

https://archrespite.org/

Centers for Disease Control and Prevention. (2018). Caregiving. Retrieved from:

https://www.cdc.gov/aging/caregiving/index.htm

Chi, N. C., Demiris, G., Lewis, F. M., Walker, A. J., & Langer, S. L. (2016). Behavioral and Educational 

Interventions to Support Family Caregivers in End-of-Life Care: A Systematic Review. American 

Journal of Hospice & Palliative Medicine, 33(9), 894-908. Retrieved from: 

http://journals.sagepub.com/doi/pdf/10.1177/1049909115593938

Gardiner, C., Brereton, L., Frey, R., Wilkinson-Meyers, L., & Gott, M. (2013). Exploring the financial 

impact of caring for family members receiving palliative and end-of-life care: A systematic review of 

the literature. Palliative Medicine, 28(5), 375-90. Retrieved from: 

http://journals.sagepub.com/doi/pdf/10.1177/0269216313510588

Garrido, M. M., & Prigerson, H. G. (2014). The end-of-life experience: modifiable predictors of caregivers’ 

bereavement adjustment. Cancer, 120(6), 918-25. Retrieved from: 

https://onlinelibrary.wiley.com/doi/abs/10.1002/cncr.28495

Gitlin, L. N., & Wolff, J. (2012). Family involvement in care transitions of older adults: What do we know 

and where do we go from here? Annual review of Gerontology and Geriatrics, 31(1), 31-64. Retrieved
Final Report OPE Bereaved Caregiver Study

30

from: https://jhu.pure.elsevier.com/en/publications/family-involvement-in-care-transitions-of-olderadults-what-do-we-3

Health and Medicine Division Committee on Family Caregiving for Older Adults. (2016). Families Caring 

for an Aging America: Chapter 1 - Introduction. Washington (DC): National Academies Press. 

Retrieved from: https://www.ncbi.nlm.nih.gov/books/NBK396405/

Health and Medicine Division Committee on Family Caregiving for Older Adults. (2016). Families Caring 

for an Aging America: Chapter 3 – Family Caregiving Roles and Impacts. Washington (DC): National 

Academies Press. Retrieved from: https://www.ncbi.nlm.nih.gov/books/NBK396398/

Institute of Medicine Committee on the Future Health Care Workforce for Older Americans. (2008). 

Retooling for an Aging America: Building the Health Care Workforce. Washington (DC): National 

Academies Press. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK215403/

Kim, S. Y., Kim S. J., Kim, J. M., Kim, S. W., Shin, I. S., Shim, H. J., Cho, S. H., Chung, I. J., & Yoon, J. 

S. (2018). Prevalence and predictors of major depressive disorder in bereaved caregivers at 6 and 13 

months. Palliative & Support Care, 1-6. Retrieved from: 

https://www.cambridge.org/core/journals/palliative-and-supportive-care/article/prevalence-andpredictors-of-major-depressive-disorder-in-bereaved-caregivers-at-6-and-13-

months/616DCC52180799B31FF3DDE266632839

The Lewin Group. (2016). National Family Caregiver Support Program (NFCSP) Process Evaluation. 

Retrieved from: https://www.acl.gov/sites/default/files/programs/2017-02/NFCSP_Final_Reportbriefing.pdf

Link, G. (2015/2016). The Administration for Community Living: Programs and initiatives providing 

caregiver support. Generations, 39(4), 57-63. Retrieved from: http://fsrtc.ahslabs.uic.edu/wpcontent/uploads/sites/9/2016/03/Generations-ACL-Caregiver-Programs.pdf

Liu, Y., Kim, K., & Zarit, S. H. (2015). Health Trajectories of Family Caregivers: Associations with Care 

Transitions and Adult Day Service Use. Journal of Aging and Health, 27(4), 686-710. Retrieved from: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5533951/

MetLife Mature Market Institute. (2011). the MetLife Study of Caregiving Costs to Working Caregivers: 

Double Jeopardy for Baby Boomers Caring for Their Parents. Retrieved from: 

https://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf

Miller, E. A., & Weissert, W. G. (2000). Predicting Elderly People’s Risk for Nursing Home Placement, 

Hospitalization, Functional Impairment, and Mortality: A Synthesis. Medical Care Research and 

Review, 57(3), 259-97. Retrieved from: 

http://journals.sagepub.com/doi/abs/10.1177/107755870005700301?url_ver=Z39.88-

2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed

Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Bro, F., & Guldin, M. B. (2016). Do we need to change 

our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during 

end-of-life caregiving and bereavement. Clinical Psychology Review, 44, 75-93. Retrieved from: 

https://ac.els-cdn.com/S0272735816000039/1-s2.0-S0272735816000039-main.pdf?_tid=3cfc184b27d7-4b41-9d82-00ab07cdd0fd&acdnat=1529257857_8a2d19101c56972b1dd0ff00fb54243e
Final Report OPE Bereaved Caregiver Study

31

Older Americans Act Reauthorization Act of 2016, 42 U.S.C. § 3001 (2018). Picone, G. A., Sloan, F. A., 

Chou, S. Y., & Taylor, D. H., Jr. (2003). Does Higher Hospital Cost Imply Higher Quality of Care? 

Review of Economics and Statistics, 85(1), 51-62. Retrieved from: 

https://www.researchgate.net/publication/24095807_Does_Higher_Hospital_Cost_Imply_Higher_Qual

ity_of_Care

Schulz, R., & Sherwood, P. R. (2008). Physical and Mental Health Effects of Family Caregiving. Journal of 

Social Work Education, 44(3), 105-13. Retrieved from: 

https://www.tandfonline.com/doi/pdf/10.5175/JSWE.2008.773247702?needAccess=true

University of Missouri – Kansas City. (2017). About LifeCourse. Retrieved from:

http://www.lifecoursetools.com/about/

Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one’s physical health? A 

meta-analysis. Psychology Bulletin, 129(6), 946-72. Retrieved from: 

https://www.ncbi.nlm.nih.gov/pubmed/14599289

Zarit, S. H., & Zarit, J. M. (2015). Chapter 2: Family Caregiving. In Bensadon, B. A. (Ed.), Psychology and 

Geriatrics: Integrated Care for an Aging Population (pp. 21-43). Academic Press. Retrieved from:

https://www.sciencedirect.com/science/article/pii/B9780124201231000022