Abstract
Family caregivers often manage complex medical and nursing tasks (MNTs) for older adults transitioning from hospital to home. To explore caregivers’ experiences managing MNTs in the postacute home health care (HHC) setting, we interviewed by phone 20 caregivers of older adults who received HHC following a hospitalization. Interviews were recorded, transcribed, and analyzed using directed content analysis. Caregivers highlighted the technical complexity and emotional impact of performing MNTs, as well as social (e.g., family, friends) and environmental (e.g., neighborhood, housing) resources they leveraged to meet the older adults’ care needs. Caregivers also identified challenges coordinating care and services within HHC and the larger health care system. Caregiver engagement in the postacute HHC setting should incorporate tailored training and support, assessments of socioenvironmental context and resources, and facilitated navigation of the health care system. Future research should elucidate factors associated with successful collaborative relationships among HHC providers, older adults, and their caregivers in the postacute HHC setting.
Introduction
Approximately 3.4 million older adults utilized home health care (HHC) services in 2017 (Medicare Payment Advisory Commission, 2019). HHC services include skilled nursing and therapy care provided to patients during the postacute period following a hospitalization. A majority of HHC services are provided to older adults with multiple chronic conditions and medications, as well as functional limitations (McDonald et al., 2013; Murtaugh et al., 2009). Cost containment efforts that began in the 1980s and have continued over time have shortened the length of hospital stays and resulted in patients being discharged home “quicker and sicker” with acute and unstable conditions (Agency for Healthcare Research and Quality, 2019; Qian et al., 2011; Rosenfeld & Russell, 2012). This trend, combined with the intermittent nature of postacute HHC services, often places significant responsibilities upon informal family caregivers. This study had three objectives to (a) describe the range of medical and nursing tasks (MNTs) that family caregivers perform for older adults who transitioned from hospital to home with postacute HHC, (b) clarify how interaction dynamics between family caregivers and older adults affect caregivers’ performance of MNTs, and (c) describe how social and environmental resources, and HHC and health systems affect caregivers’ performance of MNTs.
Family caregivers serve a crucial role for patients in the postacute HHC setting, managing a wide assortment of personal care and instrumental tasks spanning bathing and dressing to household management and food preparation (Chase et al., 2019b). Recently, policymakers and advocates have called attention to the intense and complex set of MNTs that caregivers perform for older adults with multiple physical, cognitive, and behavioral health conditions (Reinhard et al., 2019). These tasks are many and varied, including medication assistance, wound care, use of disease monitors, and operation of durable medical equipment among others (Reinhard et al., 2019). Family caregivers often become responsible for performing these tasks without instruction and support from health care providers (Reinhard et al., 2019). Indeed, studies of caregivers who manage physical functioning tasks for older adults within the postacute HHC setting have revealed a lack of formal training and support (Chase et al., 2019a). The lack of preparation, formal training, and supports for family caregivers may compromise their ability to meet the postacute care needs of older adults receiving HHC, increasing the odds that patients will experience rehospitalization or visit the emergency department (Chase et al., 2018). Caregivers who perform MNTs are also two times more likely to experience higher levels of caregiver burden (Lee et al., 2019). With the increasing reliance on family caregivers to provide posthospitalization care, addressing the risk of burden and other negative caregiver outcomes is imperative.
Planning early and effective caregiver engagement can promote caregiver confidence and avert negative outcomes (Mollica et al., 2017). HHC providers have a unique opportunity to engage caregivers of older adults in the postacute HHC setting. Understanding caregivers’ experiences managing complex tasks, such as MNTs, in the postacute HHC setting can aid in the development of strategies for effective engagement. Unfortunately, previous studies have not explored caregivers’ experiences with managing MNTs for older adults within the postacute HHC setting. In addition, previous studies of family caregivers who perform MNTs for older adults have not sufficiently leveraged existing theoretical perspectives to inform our understanding of how social, environmental, and system factors influence caregiving relationships between older adults and their family members.
Theoretical Perspective
The Theory of Dependent-Care, a corollary to Orem’s self-care deficit theory of nursing, represents a framework for describing the complex sets of factors which shape the capability of family members to meet the therapeutic self-care demands of older adults (Denyes et al., 2001; Taylor et al., 2001). Social dependency, which refers to situations in which one person requires assistance from another (e.g., self-care deficit), is foundational to the Theory of Dependent-Care and may arise in the context of postacute HHC services when family caregivers are relied upon to perform MNTs between visits from HHC providers (Taylor et al., 2001). Family caregivers responsible for managing MNTs for older adults receiving HHC may draw on a variety of personal resources, social and environmental resources, and care system resources to meet the therapeutic care needs of older adults following a hospitalization. When the demands of these tasks exceed the capability of the caregiver (i.e., a care deficit is present), the caregiver may decide to leverage supports from other persons, facilities, and agencies to meet the care needs of the older adult (Taylor et al., 2001). The extent to which caregivers leverage additional resources to assist with managing various MNTs for an older adult following hospitalization is conditioned by their evaluation of those tasks (Figure 1). This evaluation encompasses caregivers’ knowledge and calculation of the self-care demands of the older adult (i.e., tasks related to the other, in which “other” refers to the care recipient); the setting in which those tasks will be provided and their ability to modify and cooperate with others within that environment (i.e., the situation of care); and the complex interactions between themselves, the patient, and the health system (i.e., the system of care; Taylor et al., 2001).
Resources caregivers may leverage after caregiver appraisal of a care deficit.
Previous research has not applied the Theory of Dependent-Care to the particular context of family caregivers who manage MNTs for older adults receiving post-acute HHC. Nor has it employed this theory as a framework for clarifying how the various tasks associated with caregiving (i.e., tasks related to the other, tasks related to the situation of care, and tasks related to the system of care) shape caregivers perceptions of those tasks. Building upon our prior work utilizing this theory in the post-acute HHC setting (Chase et al., 2019a, 2019b) we sought to clarify how caregivers leverage both immediate resources (e.g., family, neighbors, and the community) and those available through the larger health system to meet those needs.
Design and Methods
Participants and Setting
Study participants were recruited from a single, large, not-for-profit Medicare-certified HHC agency in the northeast. Recruitment followed a two-step process. First, a research assistant identified HHC patients who (a) received HHC after hospitalization 6 months prior to the study initiation, (b) were aged 65 years or older at the start of HHC, and (c) reported having a caregiver who either assisted with or needed training or support to assist in at least one of the following care management activities: medication administration, medical procedures/treatments, management of equipment, supervision and safety, advocacy or facilitation. Second, the research assistant called caregivers of the patients who fit these criteria to elicit the caregivers’ interest in being interviewed and screened for eligibility. Caregivers were eligible if they were aged 18 years or older, English-speaking, and cognitively intact based on the Callahan 6-item screener for cognitive impairment (Callahan et al., 2002). Caregivers did not need to reside with the patient to be eligible. Caregivers received a US$30 incentive for completing the semi-structured interview. The institutional review board (IRB) approval was obtained from the Visiting Nurse Service of New York and the University of Missouri.
Figure 2 depicts participant selection. The research assistant contacted 141 caregivers. Of the 75 successfully reached (53%), 31 caregivers (41%) were screened and agreed to participate, and 44 (59%) were ineligible. When contacted by the interviewer, 11 caregivers could not be reached or no longer wanted to participate, resulting in 20 final caregiver participants.
Participant selection.
Data Collection
Two doctoral-prepared researchers with experience conducting qualitative research interviewed eligible caregivers by telephone. Demographic data (e.g., caregiver age, sex, race/ethnicity, education, and employment status) and caregiving data (e.g., relationship to older adult, years providing care) were collected at the start of the interview followed by a semi-structured interview. Interview questions were based on the Theory of Dependent-Care (Table 1). Additional probing questions were used to elicit specific examples, emotions, and experiences from caregivers. Interviews were digitally audio-recorded, then transcribed. Transcriptions were compared line by line with the audio files for accuracy.
Example of Semi-Structured Interview Questions Based on the Theory of Dependent-Care.
Note. IV = intravenous.
Data Analysis
We used descriptive statistics to characterize study participants. Qualitative data were analyzed using Dedoose software (http://www.dedoose.com/, Version 8.3.35) and directed content analysis (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005). Directed content analysis is a systematic and deductive method of coding text and identifying patterns in qualitative data in the context of existing theory or prior research (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005). We used the Theory of Dependent-Care to guide our analysis by categorizing relevant codes within three main theoretical constructs: “tasks related to the other,” “the situation of care,” and “the system of care.” “Tasks related to the other” encompassed caregivers’ descriptions of the MNTs in which they engaged to ensure older adults’ care needs were met. “The situation of care” focused on the immediate social and environmental resources that caregivers may have accessed to manage the MNTs specific to the care needs of the older adult. “The system of care” incorporated caregivers’ experiences engaging with the larger health care system and services available to manage MNTs of the older adult. Additional codes were developed and applied as needed to capture content outside of this theoretical framework.
Coder training involved familiarization with conceptual definitions of primary categories within the Theory of Independent Care (Taylor et al., 2001). Coders each coded one transcript and reviewed coding decisions prior to proceeding with coding data from the entire sample. Two researchers independently read through and coded each interview transcript, then reviewed coding results. This application of investigator triangulation was used to ensure rigor during data analysis (Lincoln & Guba, 1985). Similar codes were then grouped together as subcategories under each main category of codes within the Theory of Dependent-Care. To further ensure study rigor, we maintained an audit trail of coding decisions and analysis. We assigned pseudonyms for caregivers’ exemplar quotes.
Results
Participant Characteristics
A total of 20 caregivers were interviewed. Interviews ranged in length between 15 and 62 min, with a median interview length of 22 min (interquartile range = 11.02). Characteristics of the caregiver participants are presented in Table 2. The mean age of caregivers was 57.45 years (SD = 10.60). A majority of participants were female (75%; n = 15). The sample was racially/ethnically diverse, with 35% of the sample being Black, 30% (n = 7) being of Hispanic ethnicity (n = 6), and 20% (n = 4) being non-Hispanic White. Most caregivers were children of the care recipient (75%; n = 15) and did not live with them (70%; n = 14). More than half the sample were employed full time (55%; n = 11). Most caregivers in our study were well educated with most participants either having completed some college (40%; n = 8), having finished college (35%; n = 7), or having postgraduate education (10%; n = 2). Most caregivers reported good (35%; n = 7) or very good to excellent health status (35%; n = 7), while few participants reported their health as fair (25%; n = 5) or poor (5%; n = 1). The median number of years caregivers had been providing care was 9.5, with a range of 6 months to 20 years.
Caregiver Participant Characteristics (n = 20).
Note. SD = standard deviation; GED = general education diploma.
A summary of categories and subcategories from our analysis is presented in Table 3.
Theory-Based Categories and Subcategories Used to Organize Codes.
Note. MNTs = medical and nursing tasks; HHC = home health care.
Tasks Related to the Other
Caregivers described their experiences managing complex MNTs in the social context of dependency. They engaged in diverse activities, such as medication administration and management, wound care, managing drains and drainage bags, monitoring patient symptoms and conditions, managing and arranging for medical equipment, and coordinating care. However, they were consistently aware of the social and emotional ramifications that coincide with the older adults’ dependency on them.
Caregivers’ descriptions of MNTs
The most frequent MNT performed by caregivers for HHC patients involved medication administration and management, including for insulin, antibiotics, and opioids among others. Caregivers performed several interrelated activities to ensure patients had access to, and received the “right medicines” (Mary, 70 years, spouse). Caregivers felt a sense of responsibility for “doing the right thing” (Karl, 63 years, son) by reading labels, following up with doctors, using organizational tools (e.g., pill boxes and dividers), and paying close attention for any medication side effects.
In addition to medication administration and management, caregivers also managed surgical wounds, ulcers, rashes, or sores that needed special attention. Caregivers described cleaning wounds, ordering wound care supplies, monitoring wound conditions for infection and healing, and changing dressings and drains (including ostomy bags). Caregivers even described developing their own methods for managing wound care, including one who described how she “came up with my own sanitary method of cleaning everything down and everything was wiped down with alcohol and everything” [Jennifer, 50 years, daughter]. Caregivers also learned how to manage medical equipment and therapies prescribed to patients, including wheelchairs and walkers, emergency alert bracelets, medical beds, oxygen tanks (including continuous positive airway pressure [CPAP] units), spirometers, and pacemakers.
Caregivers also spent considerable time monitoring disease conditions and associated symptoms, including those spanning cognitive limitations linked with Alzheimer’s disease and dementia to physical limitations associated with diabetes and heart disease. Disease-monitoring tasks included keeping blood sugar logs, ensuring patients follow dietary and medical advice, watching for medication side effects, noticing subtle changes in physical and cognitive function, and coordinating follow-up care and appointments.
Dependency
The characteristics and quality of social relationships between caregivers and older adults were important factors in the ability of caregivers to fully address the older adult’s needs for assistance with MNTs. Certain aspects of providing medical and nursing care, such as changing wound dressings or assisting patients with using medical equipment, shed light upon issues of dependency. One aspect of caregiving relationships—often observed between parents and children—involved role reversal, in which the older adult accepts care from someone whom they previously cared for earlier in life. One caregiver assisted her mother with changing and cleaning a colostomy bag described the following: I explained to her, you know, “I know you’re used to taking care of me and everything but our roles are reversed now, Mom” . . . You have to psychologically get prepared in order to take care because you have to realize, especially if it’s your parent, you have to realize . . . “all of a sudden now my baby that I was taking care of has to take care of me, and how do I feel about that, and how is she feeling about that, you know.” [Jennifer, 50 years, daughter]
Caregivers indicated that issues of dependency sometimes led to relationship strains, including feelings of “degradation” and “alienation.” Older adults sometimes expressed disapproval with assistance. These feelings posed barriers to certain MNTs such as wound care, during which caregivers expressed fear of causing pain (“So I was kind of nervous and I didn’t know if I move something I might hurt her” [Daniel, 64 years, son]). Caregivers were sensitive to the feelings of their loved ones, taking special precautions to avoid causing pain or feelings of being a burden.
Trust
Caregivers described trust as being an important factor in providing assistance with MNTs. Trust manifested itself in two ways: (a) trusting oneself as the primary caregiver and (b) trust within the caregiver–care recipient dyad. Many caregivers described how they trusted themselves in accomplishing these complex tasks. For example, one caregiver described a preference not to hand off her mother’s colostomy care to formal caretakers, saying “I wouldn’t have it any other way. I don’t trust nobody else to do that for my mother. I would never trust anybody else to do that for my mother” [Jennifer, 50 years, daughter]. Trusting relationships built upon communication between caregivers and care recipients facilitated assistance with MNTs: I communicate with her what’s going on, she feels comfortable that I am not hiding anything from her. Like, the caregiver and the patient needs to have a very open relationship, a trust, and I communicate with her what they say and she communicates for me the best she can . . . [Nancy, 35 years, daughter]
In contrast, caregivers’ perceived lack of honest communication from the older adult was a barrier to care. For example, caregivers described how patients would withhold certain information from them for fear of instigating negative emotions, such as sadness or depression.
I think my father would never tell me he had heart problems . . . He was the type of person like very happy person and he didn’t want me to feel like depressed in a way, you know, like didn’t want to feel sorry for him. He was trying to cover it up. (laughs). [Lynn, 49 years, daughter]
Caregivers also indicated how trust was contingent on the perceived self-management capability of the patient in performing MNTs, such as managing and administering medications: When it comes to her high blood pressure and her diabetes she [the caregiver’s mother] feels like she knows her body, which she does, better than anyone else, but she kind of will be like ‘Well, I don’t want to drink my whole high blood pressure pill and get too low, I’m gonna just drink half.’ So a little too much of that freaks me out because God forbid she’s self-medicating, what if she does it too much, you know, of the opposite. So that’s where I feel like I trusted her until she started getting too confident in self-medicating herself . . . [Nancy, 35 years, daughter]
The Situation of Care
Caregivers accessed social and environmental resources to help them manage the older adult’s care needs. Caregivers reported difficulties balancing their caregiving role with their work schedule and other personal responsibilities. Leveraging resources, such as other family members, friends, and neighbors, or housing characteristics, helped caregivers overcome perceived challenges.
Caregivers leveraging social resources
Caregivers identified family as both a resource and a challenge. Few caregivers mentioned family members who assisted with MNTs; however, some caregivers identified various family members who would assist in other caregiving activities, such as assisting with functional needs or spending time socializing with the older adult. Despite having other family members who could help, many caregivers reported that they assumed the primary role because they were older or were female. Caregivers also identified neighbors or other community members as important resources to manage tasks related to the situation of care: It’s just she’s in a good situation cause these people all, all kind of grew organically into her life. It started with like the person who was like helping her with the housework and then she ended up being a caregiver and then she got a little old and so she got . . . her neighbors. [Peter, 63 years, son]
Caregivers leveraging environmental resources
Caregivers identified characteristics of the home environment and obtaining equipment as important factors in managing older adults’ symptoms and conditions. Adapting the home environment was necessary for some caregivers. One caregiver (Olivia, 66 years, daughter) stated, “I realized that [my father] was having problems getting out of bed and walking to the bathroom, so I had a bar installed in the bedroom so that he could hold onto that as he walked to the bathroom.” In other situations, the home environment was already set up with assistive devices. Gail, 53 years, described her father’s apartment, “When [my father] moved into this apartment there were already rails in the bathroom, in the shower, so that he had handles that he could hold onto.” Some older adults lived in locations that catered to the needs of aging individuals. For example, one caregiver described how resources were shared among residents in his mother’s building, “if they have it, . . . if they’re done with their walker or something they just give it to them. So, yes, you can get stuff and they’re just very helpful, you know” [Peter, 63 years, son].
The System of Care
In addition to accessing resources and support systems from their social and physical environment, caregivers relied on health care systems in the postacute care period. Postacute HHC brought both positive and negative experiences in terms of managing the older adult MNTs. Caregivers described their experiences working with the HHC care system in the context of coordinating care with HHC personnel and managing HHC services related to MNTs.
Caregivers’ experiences with HHC personnel
Caregivers coordinated care across health systems to ensure the older adults’ care needs were met. As one caregiver stated, “I’d tell you, my biggest, probably my biggest job is just coordinating all of her home care and, you know, making sure everybody gets there” [Peter, 63 years, son]. Another caregiver felt, “[she] just sort of got thrown into the mix and had to figure some things out between Medicaid, Medicare, home health people, medication, doctors and . . . it was a bit overwhelming” [Sara, 51 years, niece]. Caregivers’ descriptions of coordinating care included working with providers to ensure services were in place once the older adult returned home from the hospital, arranging appointments with primary care providers, being available for HHC nursing and therapy visits, and communicating care goals with providers. Caregivers engaged with HHC providers to learn more about medications and managing changes in their loved ones’ disease conditions. Caregivers spoke often about getting good information from HHC providers regarding wound care management, rationales for new medications, and strategies for monitoring clinical status and symptoms.
Challenges with HHC services and contrasting perceptions
Unexpected alterations in HHC services presented challenges for many caregivers. Caregivers discussed their frustrations related to reduced services, especially when providers have contrasting recommendations: Now they’re trying to cut my mother’s [home health aide] hours in half . . . That’s why I have to now sit here and do an appeal, you know, which is so ridiculous cause the nurse who came to do the assessment recently from the new agency, they said, he said to me “Well, you know, you should ask your doctor, I think your mother needs more care. She may have to get someone to stay 24 hours.” So even though the nurse who did the assessment was saying this to me, then a couple of days later they called me up and say “Oh, the doctors here decided that she needs less hours.” So this is what I’m dealing with. [Iris, 62 years, daughter]
Other caregivers had concerns regarding the older adult’s safety and level of service they currently received, expressing preferences for additional HHC: She’s alone all those hours. So, you know, when I get home in the evening it’s just thank God everything is fine and nothing’s happened and, and I take over from there. I spend the night here with her and then, you know, I, I go to work in the mornings, and then, and her homecare service comes at 9 in the morning. She works from 9 to 1, and I don’t, you know, I’m not comfortable with that. My mom’s 96, she’s frail, and she should really have more time service [sic]. I don’t know why the, the insurance providers are not, you know, giving more service. [Beverly, 84 years, sister]
Caregivers also struggled with contrasting perceptions of the older adult’s health, care goals, and services between themselves and providers. Most caregivers felt they should have a voice in determining the quantity and types of services provided to meet older adults’ care needs. Some caregivers provided examples of service decisions that they felt were not appropriate, such as hospice enrollment (“I took her off of hospice cause, I’m like, my mother’s a fighter, she’s not gonna just give up like this” [Anne, 48 years, daughter]). Other caregivers identified services that would have been helpful for the older adult to receive, such as physical and occupational therapy. Although caregivers found HHC visits useful for learning about MNTs, they also discussed how HHC providers should share additional information about supplemental programs and services for older adults. One caregiver suggested the following: . . . the caregivers need to be told that there are services out there that can basically satisfy most of what the elderly person is gonna need, and stuff like that wasn’t explained. So I think that, I think that they need to communicate better with the, the family members. [Gail, 53 years, daughter]
Discussion and Implications
We explored caregivers’ experiences managing MNTs using the Theory of Dependent-Care to advance understanding of how caregivers of older adults receiving postacute HHC services leveraged diverse resources to manage the older adults’ care needs. This work adds to our ongoing efforts to refine this theory, which is highly relevant to caregiving in the postacute HHC setting. In our past work, we identified important areas for caregiver assessments (Chase et al., 2019b) and explored caregivers’ experiences receiving training and support (Chase et al., 2019a). Collectively, this body of research addresses an important gap related to improving the engagement of caregivers of older adults receiving postacute HHC.
In the present study, we found that while caregivers in our sample participate in complex MNTs to ensure the older adults’ care needs are met, they also actively and intentionally leverage diverse resources to manage the care needs of older adults in the postacute HHC setting. These resources include their own experiences; family, neighborhood, and environmental resources; and care system resources. Caregivers evaluated the care needs of the older adult and determined what they could and could not do to meet their needs (tasks related to the other). In cases where care needs exceeded the caregiver’s skills, knowledge, comfort level, or time availability, caregivers rallied other resources such as family, neighbors, community systems (the situation of care), and the larger health system (the system of care). Interactions among and integration of these resources can support caregivers in meeting the care needs of the older adult (Araújo et al., 2018; Mazanec et al., 2018; Mollica et al., 2017). Conversely, gaps and misalignment of resources can negatively affect both caregiver and patient outcomes (Kavanaugh et al., 2019; Mollica et al., 2020). Examining how caregivers leverage available resources to meet the care needs of an older adult during the postacute HHC period highlights potential strategies for engaging caregivers.
Caregivers in our study sought alternative resources when care needs exceeded their capacity to provide care by leveraging family and local resources. However, the capacity and availability of family, community, and environmental resources to facilitate caregiving activities varied. For example, family members may have been unwilling or unprepared to assist with MNTs or may not have been nearby to help. Furthermore, it is possible that caregivers may not have been familiar with local resources or lived in an area with fewer resources available. Thus, assessments of patient and caregiver needs in the postacute HHC setting should elicit information on family, community, and environmental supports that benefit the patient–caregiver dyad. Comprehensive caregiver assessment may lead to tailored training and support strategies to ensure caregivers have the necessary resources to ensure that older adults’ care needs are met (Chase et al., 2019b). HHC providers can be key resources for connecting caregivers to educational opportunities, groups for social support, and respite services of which caregivers may not be aware. Assessments should also incorporate caregiver knowledge, skills, reported needs, as well as psychosocial consequences of caregiving, such as burden, well-being, and perceived social support (Cheng et al., 2018; Liljeroos et al., 2017; Shin et al., 2011). Future research is needed to identify caregiver-reported barriers and facilitators to available resources and to determine the impact of assessments on outcomes such as improving caregivers’ accessibility and utilization of available resources and resolution of unmet care needs for older adults.
Caregivers in our sample discussed challenges with navigating the health care system and coordinating and organizing health care services. Consistent with past research, caregivers in our sample felt frustrated and that they received mixed messages (Mitchell et al., 2018; Reinhard et al., 2019). Providers can facilitate navigation of the health care system and ensure caregivers have the services they need to manage the care needs of the older adult. While HHC care delivery models centered on case management have been shown to increase overall service utilization and even to delay nursing home placement among patients with dementia (Low & Fletcher, 2015), HHC stakeholders agree that increasing family caregiver burden is a crisis in need of attention (Landers et al., 2016) and that HHC nurses face numerous, serious challenges in adopting care coordination roles (Haas et al., 2019). As mentioned by a number of interviewees, home health aide services for patients have seen a significant reduction over the past two decades and shift even greater responsibility (and burden) onto family caregivers (Cabin, 2020). Health care navigation and coordination is a complex set of tasks and may require interdisciplinary strategies. For example, providers with training in systems navigation, such as gerontological social workers, could play a supportive role for family caregivers by helping them identify appropriate programs and services and overcome barriers to enrollment and use (LaValley et al., 2019).
An overarching assumption of the Theory of Dependent-Care is that dependency affects care recipients’ perception of care needs, a caregivers’ ability to meet those care needs, and the patient–caregiver dyad’s decision to seek external resources. Our analyses identified how social factors related to dependency, including perceptions of trust, social support, and agreement with providers’ decision-making, influenced caregivers’ performance of MNTs. Trusting relationships, in the patient–caregiver dyad and among patients, caregivers, and providers, facilitated the performance of MNTs. Instrumental social supports, such as assistance from other family and community members, and additional HHC services authorized by insurance providers, were also cited as helping caregivers to manage MNTs alongside the other needs of their patients. However, research is needed to elucidate social factors within the context of dependency that are associated with successful collaborative relationships among caregivers, care recipients, and HHC providers. For example, examining the extent to which familism, defined as a culturally grounded perception of closeness and obligation within family relationships (Crist et al., 2009), influences caregivers’ willingness to seek assistance from external resources could inform strategies for caregiver engagement.
Limitations
This study has some important limitations. Overall, study data fit the planned theoretical categories; however, two additional codes highlighted general caregiving challenges: trust in providers and caregiver preparation/training. The present study was focused on the types of MNTs caregivers performed and the resources they accessed to help manage these MNTs; thus, data related to trust in providers and caregiver preparation/training were not presented here. However, these are important areas for future research.
Transferability of study findings may be limited as we recruited our sample from a single HHC agency in the northeast and we did not collect information on the variability of hospital discharge practices among the patients whose caregivers were included in the study. In addition, most caregivers in our sample were experienced, having provided care to an older adult for several years. Only one caregiver participant reported being new to caregiving. Thus, our overall sample had extensive experience managing the complex care needs of the older care recipient; furthermore, they may have been more familiar with available resources and problem-solving strategies. Replication of this study among newer caregivers is needed. We did have a racially/ethnically diverse sample; however, we limited the sample to English-speaking caregivers, which may have excluded important underrepresented minority groups. We were able to recruit only a few men in our sample. An additional study limitation may be our small sample size; however, we did achieve data saturation. To the extent possible, future qualitative research that explores the perspectives and experiences of patients and HHC providers through observations and in-depth interviews may be useful for further clarifying the Theory of Dependent-Care. Future quantitative research will be needed to test the associations among theoretically relevant concepts and both caregiver and patient outcomes.
Conclusion
Caregivers who engage in complex MNTs for older adults in the postacute HHC setting leverage diverse resources to ensure an older adult’s care needs are met. HHC providers are uniquely poised to engage, train, and support caregivers. Interdisciplinary approaches to navigating care may facilitate care coordination. Future research is needed to examine tailored training and support strategies that account for caregiver-reported social and environmental resources.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was supported by the Eugenie and Joseph Doyle Research Partnership Fund of the Visiting Nurse Service of New York (grant #2018_03). The content is solely the responsibility of the authors and does not necessarily represent the official views of the Eugenie and Joseph Doyle Research Partnership Fund of Visiting Nurse Service of New York.
IRB Approval
The institutional review board (IRB) approval was obtained from the Visiting Nurse Service of New York IRB Reference#: E17-004, and University of Missouri IRB Reliance Review#: 253570
