Family caregivers emphasise patience and personal growth: a qualitative analysis from the Caregiving Transitions Study

Abstract

Background

informal caregiving for family and friends is becoming increasingly common due to the rising prevalence of chronic conditions and a shortage of affordable care options. While the impact of caregiving on caregivers’ health is well-documented, nuances in caregivers’ experiences may not be captured in quantitative studies. We aimed to better understand caregivers’ perception of their experiences through qualitative analysis.

Methods

participants were from the Caregiving Transitions Study (CTS), which is ancillary to the REasons for Geographic and Racial Differences in Stroke Study. We analysed responses from 150 caregivers to an open-ended question at the end of the CTS telephone interview concerning additional information about their caregiving experiences. We identified main themes and examined differences by sex, condition and relationship to the care recipient.

Results

four major themes were identified: cultural/family expectations; growth opportunities; and reciprocity; stressors and challenges and recommendations. Male caregivers more often indicated that their motivation for taking on this role was their sense of duty towards family, while female caregivers focused on the challenges and burden of caregiving that they experienced. Overall, caregivers highlighted the importance of patience and the positive impact of caregiving, such as opportunities for personal growth, acquiring new skills, and finding fulfillment and gratitude.

Conclusions

family caregivers shared both positive and challenging experiences as well as the impact that these experiences had on their lives. Understanding the full spectrum of the caregiving experience will help inform how the community and the health care system can best support caregivers in their roles.

Key Points

• Caregiving was viewed as an unquestioned obligation, repayment of benefits provided by the family member, acts of love or the fulfilment of promises.

• Opportunities for growth and reciprocity were the important aspects of the caregiving experience.

• Caregivers experienced lifestyle changes, financial burdens and desire for more support in their role.

Introduction

Informal caregiving for family and friends is increasingly common in the USA due to the rise in chronic conditions in an aging population, lack of available and affordable care options, and the desire of many older adults to age in place. The projected need for informal caregiving for older adults is expected to outpace the number of available caregivers dramatically in the next decade [1]. As such, caregivers’ readiness and/or burden in their role are of great importance to an ever-increasing proportion of the population.

Studies have reported both positive and detrimental health-related effects of caregiving. Sanders [2] found that 81% of caregivers reported both strains and gains from their caregiving role. Roth et al. [3] found that caregiving may have a stress-buffering effect for caregivers when compared to non-caregivers, which may reduce the impact of stress on health and mortality. Other studies have pinpointed positive aspects related to the caregiving role [4] as well as higher self-efficacy among caregivers with a positive perception of their experience [5–7]. By contrast, Kenny, King and Hall [8] found that participants’ physical and mental health declined after transitioning to a caregiving role for both male and female caregivers. Notably, this change came after 2 years for women compared to 4 years for men.

A number of studies have focused on qualitatively evaluating caregivers’ perception of their experience. Ribeiro and Paul [9] conducted qualitative interviews with 53 husbands caring for their wives and reported that 32 of the 53 caregivers reported feelings of gain that were associated with commitment and duty. Sheehan and colleagues [10] conducted focus groups with caregivers to better understand their experiences as companions for family members during routine medical visits and found that caregivers viewed the experience as positive but challenging. Furthermore, some studies found that men were more satisfied with their role as caregivers than women because it gave them a broader perspective and led to personal growth [11, 12], while another study reported no differences [13]. These studies may be influenced by cultural differences, particularly with respect to traditional gender roles and, consequently, the higher burden of care placed on female caregivers [14, 15]. This is consistent with Wolff and colleagues’ findings that women caregivers were more likely to ‘provide[ ] substantial help with healthcare actives’ and that caregivers providing substantial help were more likely to experience emotional, physical, and financial difficulties [16].

In this study, we aimed to document perceptions of the caregiving experience using a national sample of family caregivers who were already participants in a longitudinal epidemiologic study. Using qualitative data collected from a standardized interview question, we aimed to better understand the family caregiving experience by identifying main themes as well as differences by sex, care recipient clinical condition and relationship to the care recipient.

Design and methods

Participant recruitment

REGARDS

The REasons for Geographic and Racial Differences in Stroke (REGARDS) Study is a population-based study of adults in the USA, which aimed to identify the causes for the high rates of stroke mortality among Blacks and residents in the south-eastern states [17]. REGARDS enrolled 30,239 non-Hispanic Black and White participants over the age of 45 from 2003 to 2007 and deliberately oversampled Blacks and persons residing in stroke belt states (Alabama, Arkansas, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, and Tennessee).

REGARDS participants were contacted by letter, followed by a phone call using a computer-assisted telephone interview (CATI). Once potential participants were determined to be eligible, they provided verbal consent, demographic information, medical history, and other measures of quality of life to trained CATI interviewers. Approximately, 4 weeks after the initial interview, participants were visited in their homes to obtain physical measurements and blood samples. A second comprehensive in-home visit was carried out approximately 9 years after the initial in-home visit [18].

Caregiving Transitions Study

The Caregiving Transitions Study (CTS) is an ancillary study of REGARDS, which aims to examine the health effects of family caregiving. Two samples of family caregivers were enrolled in the CTS: incident caregivers and long-term caregivers. Caregivers were identified by asking REGARDS participants approximately 12 years after enrollment into REGARDS whether they were currently providing care on an ongoing basis to a family member, friend or neighbor with a chronic illness or a disability, including any kind of regular help with basic activities such as dressing, bathing, grooming this person, managing bills, arranging for medical care, watching or supervising this person, or providing transportation. Participants who answered ‘yes’ and began providing that care at least 6 months after the first REGARDS in-home assessment and at least 3 months before the second REGARDS in-home assessment were eligible to be enrolled into CTS as incident caregivers. Additionally, we recruited participants who answered ‘yes’ and began providing care at least 6 months before the first REGARDS in-home assessment and continued to provide that care to the same person for over a decade. These persons were eligible to be enrolled as long-term caregivers. The care recipient had to be >18 years of age and not residing in a nursing home, assisted living facility or other residential care setting at the time of the CTS interview. The caregiver must have provided at least 5 hours of care per week and lived with or within 50 miles (80 km) of the care recipient. All caregivers included in the current analysis were caregivers for at least 1.9 years before the baseline CTS interview.

A detailed description of the design, sampling and participant enrollment for the CTS has been described elsewhere [19]. A baseline interview was conducted by telephone for the CTS, which collected detailed information on care provided, caregiver burden and caregiver well-being.

At the end of that CTS baseline interview, caregivers were asked to respond to the following question: ‘Is there any other information that you can think of about your experience in being a caregiver that we should know about or you think might be beneficial to the study?’. The goal of the open-ended question was to elicit any additional information and to capture the caregivers’ overall experiences as a caregiver. Participants’ responses were written down verbatim or a detailed summary was entered into a database immediately by a trained research interviewer. Responses were not audio recorded.

Coding and analyzes

Participants’ responses to the open-ended interview question were analyzed using NVivo (QSR International) [20], a software program used for qualitative data analysis. Following Braun and Clarke’s methodology, data were analyzed by caregiver category (women/men incident caregivers and women/men long-term caregivers) using an inductive approach by two of the authors (M.D.B. and C.L.) [21]. We created a preliminary codebook from which the main themes were developed, reviewed, and refined until consensus was reached [22]. The codebook included a definition for each theme and subtheme as well as representative quotes from the interview respondents [23, 24].

Sentiment analysis

We assigned the caregiver comments as corresponding to one of the three following sentiments: (i) positive perspectives, (ii) hardships/difficulties or (iii) neutral. A ‘positive perspective’ refers to an experience the caregiver considers to be positive in that they learned something from their role or were able to give back to the care recipient. ‘Hardships/difficulties’ express the caregiver’s need or wish for something to help them in their caregiving role. A ‘neutral’ comment is pragmatic in nature, such as a recommendation to other caregivers.

Results

Participant characteristics

Of the 251 incident caregivers, 129 (51%) provided analyzable responses to the open-ended interview question; the other 122 responses were along the lines of ‘I have nothing to add’ or ‘not at this time’. Among the 32 long-term caregivers, 21 (66%) provided analyzable responses. Race, sex and dementia caregiving status were not associated with the tendency to give qualitative comments.

Incident caregivers and long-term caregivers were primarily female, White and in their early 70s. About half of the incident and long-term caregivers provided care to a person with dementia. The care recipients were mainly spouses, parents or parents-in-law of the caregivers and received an average of 50 hours of care per week (Table 1).

Table 1.

Participant characteristics

Variable	Incident caregivers	Long-term caregivers
N	129	21
Age at CTS interview, M (SD)	70.9 (8.3)	71.5 (6.6)
Sex, female, N (%)	82 (64)	15 (71)
Race, Black, N (%)	42 (33)	7 (33)
Care recipient dementia status, N (%)	66 (51)	9 (43)
Care recipient relationship to caregiver, N (%)
Spouse	65 (50)	11 (52)
Parent or parent-in-law	38 (29)	2 (10)
Other	26 (20)	8 (38)
Years of caregiving, M (SD)	5.6 (2.4)	23.2 (11.0)
Hours of care per week, M (SD)	48.4 (29.6)	51.7 (28.5)

M = mean; SD = standard deviation.

Table 2 presents a comparison of caregiver age, sex and race by the care recipient condition. Conditions differ by the care recipient age and by spouse versus non-spouse relationship with their caregivers. Care recipients with mental/developmental disability or degenerative neurological conditions were younger than their caregivers, while for other care recipient conditions, care recipients were older than their caregivers. There was little difference in caregiver age, sex or race by the care recipient condition.

Table 2.

Comparison of caregiver age, sex and race by care recipient condition

Care recipient condition	N	Care recipient age		Caregiver age		Caregiver sex (female)		Caregiver race (Black)		Relationship to care recipient (spouse)
		M	SD	M	SD	N	%	N	%	N	%
Dementia	75	81.6	10.3	72.3	8.2	50	66.7	25	33.3	37	49.3
Stroke	13	74.8	7.7	66.6	6.1	9	69.2	4	30.8	10	76.9
Heart disease	13	77.3	11.4	69.8	8.7	8	61.5	2	15.4	7	53.9
Physical disability/frailty	20	75.9	15.6	70.3	8.5	13	65.4	7	14.3	7	35.0
Other chronic physical illnesses (cancer, COPD, diabetes and renal failure)	13	75.3	10.5	71.8	9.9	6	46.2	5	38.5	8	61.5
Mental/developmental disability	7	51.1	11.6	66.9	4.3	7	100.0	4	57.1	0	0
Visual impairment/blindness	5	80.9	11.7	72.2	5.7	3	60.0	1	20.0	3	60.0
Other degenerative/neurological conditions (Parkinson’s, MS)	4	71.1	6.1	72.0	6.4	1	25.0	25.0	25.0	4	100.0

M = mean; SD = standard deviation.

Themes

We identified four major themes from the data: (i) cultural/family expectations, (ii) growth opportunities and reciprocity, (iii) stressors and challenges and (iv) recommendations. Following each quote, we indicated whether the caregiver is an incident or long-term caregiver, the care recipient’s condition, their relationship to the caregiver, and the caregiver’s race and sex.

Cultural/family expectations

Caregivers identified long-standing familial or cultural expectations to care for family members with chronic disease or disability. Both men and women viewed caregiving variously as an ‘unquestioned obligation’, a repayment for all of the benefits provided by the family, an act of love or the fulfillment of promises made to family members. Men caregivers tended to talk more about duty to family, women talked about how their faith supports them in their role as caregivers.

Subtheme 1: duty to family

A number of caregivers expressed feeling responsible for caring for loved ones. A male caregiver in his 60s said, ‘My parents raised me to look after my family. It is my moral duty to do so. I am glad to be able to help them’. (incident, stroke CG, mother, White, male). Another male caregiver in his 70s said ‘… [I was] raised to take care of my family …’ (incident, dementia CG, spouse, White, male).

Some caregivers shared that, while at times caregiving was burdensome, they nevertheless felt a sense of obligation to care for family members. One woman in her 60s commented, ‘I promised my father-in-law that I would do whatever it takes to not put [my mother-in-law] in a nursing home’ (incident, dementia CG, mother-in-law, White, female).

Some spouse-caregivers saw caregiving as an extension of their love and commitment to their spouse. One woman said, ‘First thing, I do not like the word “caregiver”. We are married. I do not get paid. I do what I do out of love. I feel like the term of caregiver takes something away from that’ (long-term, dementia CG, spouse, White, female).

Subtheme 2: faith-based view

For some caregivers, providing care for a family member is an act of faith. A man in his 60s taking care of a parent said, ‘We have a faith-based view that places great importance on honoring your parents …’ (incident, heart disease CG, mother, White, male). Others cited their religious beliefs as key to finding the strength to get through the experience of caregiving. ‘Faith in God has been the biggest factor in helping me get through this process’ (incident, physical disability CG, mother, White, female).

Growth opportunities and reciprocity

Both men and women caregivers focused on the positive impact of the caregiving experience on themselves. Caregivers noted that caregiving provided opportunities for personal growth, learning new skills as well as for finding a sense of gratitude, satisfaction and fulfillment. Other caregivers focused on the external impact of caregiving, reflecting on the imperative to provide care recipients with dignity and respect in spite of challenges.

Subtheme 1: skills and personal growth/positive outlook

Various caregivers were able to look at the positive side of caregiving, such as by learning from and improving their caregiving experience. Some caregivers were pragmatic about the demands of caregiving but nonetheless, looked for the positive in the situation. A woman in her 80’s shared ‘It is something you have to do from the heart, if your heart is not in it you will not be able to stick with it … remember that when things get tough, and your loved one says things that hurt you, you have to realize it’s not that person saying things to you, it is their disease’ (incident, dementia CG, friend or neighbor, Black, female). Some caregivers experienced satisfaction in learning new skills and felt that caregiving was the best thing they had ever done. Another woman in her 80s said she was doing things she never thought she would be able to do and she was surprising herself every day with what she was capable of. Many caregivers indicated that they had learned a great deal about the health care system through the process of advocating for their care recipient; some had taken online classes related to health care issues.

Subtheme 2: reciprocity and valuing human dignity

Many caregivers expressed the importance of treating care recipients with dignity and respect and that they would hope for reciprocity if roles had been reversed. For example, ‘You treat them the way that you would want to be treated’ (incident, stroke CG, spouse, Black, female) because ‘… one of these days we will all need help’ (incident, physical disability CG, friend or neighbor, White, male). These caregivers’ approach to caregiving is informed by the belief that taking care of the care recipient was simply the right thing to do. One caregiver expressed that they felt ‘… a great sense of fulfillment’ because ‘they had stepped up to care’ for their care recipient (incident, physical frailty CG, mother, White, female).

Stressors and challenges

Caregivers commented on the physical and psychological challenges they faced over the course of caregiving. Men and women caregivers stated that they had experienced significant changes in their lifestyle and relationships. Women caregivers in particular noted that their experience with caregiving had been difficult due to the lack of affordable assistance and expressed a desire for additional support.

Subtheme 1: lifestyle changes and financial burden

Care recipients reported different types of loss, such as the loss of relationships with friends and family, loss of companionship from the care recipient, loss of their dreams of travelling, etc. A female caregiver shared, ‘The hardest part is the loneliness and the lost plans. We had planned to travel the world together. Now all of that is out’ (long-term, dementia CG, spouse, Black, female). Changes in caregiver/care recipient relationships can also change the role of the caregiver, and caregivers are not always comfortable with this new role: ‘The experience has taught me to make decisions on my own and that has been the part that I dislike the most and has been the hardest part for me’ (long-term dementia CG, spouse, White, female). For some caregivers, the time commitment of caregiving can feel restrictive. One stated, ‘The level of confinement has changed my lifestyle greatly; my involvement in different organizations has been cutback’ (incident, dementia CG, mother, Black, female). Another caregiver characterised the experience as ‘Very difficult emotionally [and] I also feel like a prisoner’ (incident, dementia CG, spouse, White, female).

Another stressor for caregivers was the financial burden of out-of-pocket costs associated with the care recipient’s illness, the difficulty and expense of obtaining help and the unaffordability of physical accommodations. One caregiver shared, ‘…[even though] there are a lot of resources out there to help … programs are not available to everyone so we have to pay out of pocket which I am not capable of doing’ (incident, dementia CG, mother, Black, female).

Subtheme 2: negative feelings and desire for more support

Caregivers sometimes expressed a feeling of being overwhelmed, burdened and needing more support, particularly when they have multiple care recipients. One caregiver stated, ‘I’m also a caregiver to my husband because of a brain aneurysm, which is an added stress. He can sometimes be harder to manage than my mom. It can be very difficult trying to take care of both’ (incident, blindness CG, mother, White, female). Becoming a caregiver for a second time can pose additional stresses: ‘I went through the same with my husband, so taking care of my mother is just too much déjà vu’ (incident, dementia CG, mother, White, female). The lack of support was frequently cited as a source of stress. As one caregiver explained, ‘If there was a way to get a mental break from everything for just a little while it would help a lot…’ (incident, dementia CG, spouse, White, male).

Recommendations

Caregivers provided advice for other caregivers as well as broader recommendations for health care professionals and policymakers to help reduce caregiver burden. Both male and female caregivers frequently noted the importance of patience, staying calm and having a positive outlook. They both also felt that it was helpful to have good relationships with medical care providers and to establish a robust care network in the community.

Subtheme 1: self-care and sources of support

Caregivers most frequently emphasized the importance of remaining calm and being patient with the care recipient. Several caregivers expressed variations of ‘Always stay calm and relaxed with them; no stress is the best’ (incident, physical disability CG, spouse, White, male) and ‘Patience is the number one thing’ (incident, dementia CG, mother, White, male). One caregiver also commented on the need for caregivers to be patient and accepting of their own limitations, stating, ‘There is a time period where you have to come to the realization that this is the way it is and do the best you can’ (incident dementia CG, mother, White, female). Several caregivers felt that having a positive attitude and gratitude were important: ‘Must keep a positive outlook and keep out negative thoughts. Look for the good’ (incident, dementia CG, spouse, White, female) and ‘just become more appreciative about life in general’ (incident, dementia CG, mother, Black, female).

Subtheme 2: pragmatic advice

Participants were a wellspring of practical advice. A number of caregivers spoke about the importance of educating themselves regarding the care recipient’s condition and how to best care for them, such as by keeping a notebook of medical information and staying organised. Being aware of the care recipient’s need for autonomy was another common message. Some caregivers described needing to limit the amount of help provided so that the care recipient does ‘not feel like they are totally incapable of doing things on their own’ (incident, physical condition CG, spouse, White, male). Another caregiver shared that care recipients may resist help to avoid overburdening caregivers: ‘He refuses to let me [help him], because he doesn’t want to be a burden to me … I have a feeling that many care-recipients feel the same way’ (incident, blindness CG, spouse, White, female). Self-care is also important, by having ‘… some time to rejuvenate themselves and have a little time of to take care of themselves …’ (incident, heart disease CG, spouse, Black, male). Caregivers also recommended establishing a circle of care that includes friends, family and medical providers: ‘Get to know your neighbors, who they are .... Get to know [care recipient’s] doctors on a personal level ... Ask lots of questions’ (incident, blindness CG, spouse, White, male).

Subtheme 3: resources/networks

Several caregivers felt that their membership in support groups, counselling and networking opportunities were helpful in their role. One caregiver commented that ‘I have a counselor that I talk to once a week that has really helped me out a lot’ (incident dementia spouse CG, White, male), and another commented that she ‘started attending a group of Alzheimer caregivers in the past 4 months … that has helped’ (incident dementia spouse CG, White, female). Other caregivers felt that more reliable support resources were needed: ‘It would be nice to have more resources readily available that would allow caregivers to learn from each other’s experiences’ (incident, heart disease CG, spouse, White, female), and that ‘There needs to be some sort of support network for caregivers to give advice to each other and get to know each other …’ (incident, dementia CG, spouse, White, female).

The sentiments of caregivers’ comments were also classified into three categories: (i) positive perspectives, (ii) hardships or difficulties and (iii) neutral; see Table 3. For male caregivers, positive perspective comments outnumbered those about hardships or difficulties, whereas for female incident caregivers, the reverse was true. For long-term caregivers, positive perspectives predominated.

Table 3.

Sentiment analyses of participants’ comments

Sentiments	Incident caregivers, N = 129		Long-term caregivers, N = 21
	Female	Male	Female	Male
Positive perspectives %(N)	24.4% (20/82)	40.4% (19/47)	40.0% (6/15)	50.0% (3/6)
Hardships/difficulties %(N)	40.2% (33/82)	19.1% (9/47)	33.3% (5/15)	33.3% (2/6)
Neutral %(N)	35.4% (29/82)	40.4% (19/47)	26.7% (4/15)	16.7% (1/6)

Discussion

In this qualitative study of family caregivers from a population-based cohort, both male and female incident caregivers emphasized the positive impact that caregiving had on their lives. Caregivers provided pragmatic advice for other caregivers, which was centered on maintaining a positive outlook and proactively seeking out resources. Additionally, caregivers reflected on the cultural and familial expectations to care for their family members, conceptualizing the role as something they are obligated to do or meant to do.

Participants reported that caregiving provided opportunities for personal growth, learning new skills and a sense of fulfillment and gratitude despite the challenges they encountered. This is consistent with a growing body of literature investigating the positive aspects of caregiving. A study of dementia family caregivers identified positive aspects to what has been viewed as stressful and burdensome, including finding opportunities to give back, developing greater closeness to the care recipient and identifying new personal strengths [25]. Caregivers also offered advice to other caregivers and care providers on the pragmatic aspects of caregiving. Patience, positivity and maintaining strong relationships with a circle of care in the community and with care providers were emphasized, which was consistent with their generally positive perception of their caregiving role. Prior qualitative literature has emphasized the importance of identifying and mobilising additional support, which could include tangible (e.g. informational) support as well as intangible (e.g. emotional) support [26].

We identified several differences in the perception of the caregiving experience between male and female caregivers. Many participants noted that taking on the role of caregiver reflected their sense of duty towards family, but this focus on duty to family was particularly evident among male caregivers. This is consistent with findings from a study of older Portuguese male caregivers in which main themes were identified as ‘satisfaction’ and ‘perceived social honour’ [9]. In our study, female caregivers more often noted the challenges and burdens of caregiving, including financial stress, loss of or change in relationships, and restrictions in lifestyle. This may be attributable to the higher burden typically faced by female caregivers compared to male caregivers. A systematic review of the determinants of caregiving burden in Western countries found that female caregivers faced a disproportionately higher burden compared to male caregivers [14]. Similar findings were observed in a study of caregivers in China, which found that higher burden experienced by female caregivers may be explained by more engagement in physical care [27]. Evolving gender roles that encourage greater involvement among male caregivers may help balance the burden of caregiving.

Studies have demonstrated the positive and negative effects of caregiving on health. Compared to noncaregivers, caregivers experience higher levels of depression and stress [3, 28] and, paradoxically, lower mortality [3]. While Haley et al. [28] reported worsening self-reported physical health for caregivers in the CTS, a study in the same cohort found no association between inflammatory biomarkers and family caregiving [29]. The positive psychological impacts observed in our study might be considered as the psychological counterparts of the physical effects of prosocial behavior observed by Roth et al. [3]. On balance, these studies suggest that the prosocial aspects of caregiving may attenuate the physical consequences associated with caregiving such as depressive symptoms and stress. Although prior research has primarily focused on the negative health consequences of caregiving, our findings show that the positive and negative aspects of caregiving co-exist and that caregiver interventions should aim to address both in order to improve well-being [30, 31].

Our study has several strengths and limitations. Qualitative data can capture the nuanced nature of the caregiving role with a combination of positive and negative experiences. Qualitative analysis of descriptions of the caregiving role provided by caregivers, particularly those who had provided care for a long period of time, offers insight into how caregivers frame their role as part of their identity, deal with challenges and find meaning in the role. Since these qualitative data came from a national cohort study of caregivers, our sample size is larger than most qualitative studies and may represent a wider range of caregiver experiences. Our study also included caregivers who provided care for care recipients with a wide range of conditions, such as dementia, heart disease and physical frailty. These conditions likely correspond to a similarly wide range of caregiving burden and experiences and provide information on how to target future interventions to different groups of caregivers. One limitation of our study is that the open-ended interview in CTS only included one question, making this analysis largely exploratory. Another limitation is that the study did not identify the severity of the care recipient’s condition, which is likely associated with the level or intensity of care provided. Future steps may include integrating the themes we identified into separate questions in a structured interview and integrating qualitative codes with more quantitative data on the caregiver burden and the severity of the care recipient’s condition. It may be informative to repeat this study in a population of caregivers providing care for one condition to better understand the interventions most appropriate for that group.

Informal caregivers are essential to an aging society, especially as there is an increasing emphasis on allowing older adults to age in place. Our findings show that caregivers can meet the challenges of caregiving by finding meaning, engaging in mutual support with the care recipient and identifying opportunities for growth. A more comprehensive understanding of the caregiving experience can help inform future interventions as well as provide guidance for how individuals and systems can most effectively support caregivers in fulfiling their roles.

Declaration of Conflicts of Interest

None.

Declaration of Sources of Funding

This research project is supported by co-operative agreement U01 NS041588 and is co-funded by the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute on Aging (NIA) and National Institutes of Health, Department of Health and Human Service. The Caregiving Transitions Study is further supported by an investigator-initiated grant [RF1 AG050609] from the NIA. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NINDS or the NIA. Representatives of the NINDS were involved in the review of the manuscript but were not directly involved in the collection, management, analysis or interpretation of the data. The REGARDS and CTS were reviewed and approved by the Institutional Review Boards of the University of Alabama at Birmingham and Johns Hopkins University, respectively.