Deficits in activities of daily living (ADL) and instrumental ADL (IADL) become increasingly common as older adults age, which often necessitates help from informal caregivers (Reinhard, Levine, & Samis, 2012). Moreover, hospitalizations of older adults frequently lead to declines in physical functioning (PF) (Chase, Lozano, Hanlon, & Bowles, 2018; Gill, Allore, Holford, & Guo, 2004), creating new challenges for caregivers in the post-acute setting (Archbold, Stewart, Greenlick, & Harvath, 1990; Gibson, Kelly, & Kaplan, 2012). Nevertheless, caregivers can play an active role in recovery of patients transitioning from hospital to home, which may contribute to improvements in functional status (Cho, Kim, & Lee, 2013; Hahn-Goldberg, Jeffs, Troup, Kubba, & Okrainec, 2018).
Many older adults transitioning from hospital to home will receive skilled home health care (HHC) services (Alliance for Home Health & Quality and Innovation, 2017). Older HHC patients are clinically complex, with multiple chronic conditions and functional impairments (Murtaugh et al., 2009). Consequently, the demands on their caregivers are likely to be high. Nonetheless, post-acute HHC services provide opportunities for patients, caregivers, and clinicians to work collaboratively to optimize older adults' functional status. With services potentially including skilled nursing visits, as well as rehabilitative therapy (e.g., physical and/or occupational therapy) and home health aides, multiple occasions may exist for information exchange among health care providers and caregivers. Approximately two thirds of older HHC recipients have an informal caregiver present at the start of HHC (Peng, Navaie-Waliser, & Feldman, 2003); thus, HHC nurses have the unique potential to positively impact outcomes for a large population of caregivers and older patients.
To effectively tailor future interventions aimed at helping nurses train and support caregivers, caregivers' perspectives and experiences managing PF needs of older adults in the post-acute HHC setting must be understood. The Theory of Dependent Care (Taylor, Renpenning, Geden, Neuman, & Hart, 2001) is a middle-range nursing theory related to Orem's Theory of Self-Care (Orem, 1985) and describes the complex interactions among individuals who have self-care dependencies, caregivers who address these dependencies, and health systems. An important theme within the Theory of Dependent Care is the incorporation of caregivers' perspectives in the development of interventions to manage dependent individuals' self-care needs (Taylor et al., 2001). Taylor et al. (2001) describe four areas of focus—(a) the dependent individual (i.e., older patient), (b) complexity of caregiver tasks, (c) the caregiver, and (d) home environment (i.e., other sources of assistance, such as HHC and home- and community-based services [HCBS])—that should be evaluated within health systems. Specifically, eliciting caregivers' experiences, perceived role in managing care, and the extent to which they are able to manage caregiving tasks in the context of a patient's PF needs and the home environment can uncover knowledge and skills deficits to target strategies for training and support. Thus, this theory is highly relevant to the post-acute HHC setting given the unique, ongoing opportunities for HHC nurses to engage with caregivers during a critical transition in care for clinically complex older adults.
There is a dearth of qualitative research exploring the experiences and perspectives of caregivers of older adults who specifically transition from hospital to home with HHC. Existing qualitative work has captured caregivers' challenges during other types of care transitions. Dossa, Bokhour, and Hoenig (2012) conducted a longitudinal, qualitative study of older men with mobility impairments returning home after hospitalization. Patients and caregivers in their study described provider-related communication challenges, including who to contact after discharge, provider response time, and provider–provider communication (Dossa et al., 2012). Other qualitative literature on care transitions among older adults and their caregivers has illustrated caregivers' lack of preparedness and poor discharge planning, as well as caregiver burden (Coleman & Roman, 2015; Foust, Vuckovic, & Henriquez, 2012; Giosa, Stolee, Dupuis, Mock, & Santi, 2014; Solan et al., 2015). Despite this body of work, there has been little research exploring caregivers' perspectives specific to managing the PF needs of older patients in the post-acute HHC setting. Only one of the studies listed above involved caregivers of patients who transitioned from hospital to home with HHC; however, the study focused on discharge planning and discharge instructions (Foust et al., 2012). Provider participants in that study identified poor preparation among caregivers during this care transition; furthermore, patients and caregivers reported additional training and support needs after returning home, especially regarding information from discharge instructions (Foust et al., 2012).
The existing body of literature on care transitions highlights poor preparedness among caregivers of older adults and the need for enhanced communication. However, there is scant literature to explain caregivers' perspectives that can be used to tailor future training and support efforts particular to the post-acute HHC setting. Therefore, the purpose of the current qualitative, descriptive study was to explore caregivers' experiences managing the PF needs of older adults who transitioned from hospital to home with post-acute HHC. The primary research question was: “How do caregivers describe managing the PF needs for an older adult who received HHC after hospitalization?”
A qualitative descriptive study (Neergaard, Olesen, Andersen, & Sondergaard, 2009; Sandelowski, 2009) was conducted to explore caregivers' experiences managing PF needs of older adults who transitioned from hospital to home with HHC. In qualitative descriptive studies, the researcher stays close to the actual data collected, with minimal transformation of the data (Sandelowski, 2009). Thus, caregivers' voices, rather than the voice of the researcher, come through (Neergaard et al., 2009). Remaining close to caregivers' descriptions of their experiences uncovers their perceptions of training gaps that will be useful for HHC providers working with older adults and their caregivers during care transitions.
Setting and Participants
Maximum variation sampling (Polit & Beck, 2014) was used to obtain a racially/ethnically diverse sample of 20 caregivers of older adults who received HHC services following hospitalization. This sampling strategy facilitates identification of central themes relevant to the study purpose using a small, varied sample (Polit & Beck, 2014). Approximately 60% of caregivers are from racial/ethnic minority groups (AARP Public Policy Institute & National Alliance for Caregiving, 2015). Thus, race/ethnicity was selected as a particular sample characteristic to obtain substantial variation. Specifically, equal numbers of non-Hispanic White caregivers and caregivers from racial/ethnic minority groups were recruited to explore consistent themes across participants with diverse racial/ethnic backgrounds. Caregivers were recruited from a large not-for-profit HHC agency in the northeast region of the United States. First HHC patients were identified who: (a) received HHC after hospitalization; (b) were 65 or older at the start of HHC; and (c) reported having a caregiver to assist with ADL and/or IADL. Patients who also received HCBS (e.g., long-term home-based care) were eligible, as long as they also received skilled HHC after hospitalization. The Theory of Dependent Care incorporates HCBS as part of the home-environment construct, which can impact caregivers' experiences managing PF needs. Next, caregivers of eligible patients were contacted, screened, and consented. Eligible caregivers had to speak English and score ≥3 on the Callahan Six-Item Screener for Cognitive Impairment (Callahan, Unverzagt, Hui, Perkins, & Hendrie, 2002). Institutional Review Boards of the Visiting Nurse Service of New York and the University of Missouri approved the project.
Individual semi-structured telephone interviews were conducted with eligible caregivers. Interview questions (Table 1) were modeled after the theoretical foci (e.g., patient-, caregiving tasks–, caregiver-, home environment–related) within the Theory of Dependent Care (Taylor et al., 2001). The theory was used as a guide to ensure relevant questions and variables were explored. Interviews were digitally recorded and transcribed verbatim. To ensure trustworthiness, multiple strategies suggested by Lincoln and Guba (1985) were used. Strategies to maintain credibility and authenticity of data collection included recording and meticulous review of interviews. Transcriptions were compared line by line with audio files for accuracy. Caregiver demographic data, such as age, gender, race/ethnicity, and education, were collected. In addition, data were collected on self-reported health, caregivers' relationship to the older adult, years of experience being a caregiver, and living arrangement (e.g., lives with older adult [yes/no]).
Sample Caregiver Questions Modeled After Theory of Dependent Care
Coding and Data Analysis
Descriptive statistics were used to summarize caregiver characteristics. Dedoose software version 8.0.35 was used to analyze the qualitative data as well as conventional content analysis (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005). Conventional content analysis is a systematic method of coding text and identifying patterns in qualitative data (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005). Two research team members independently read through each full interview, then re-read all interviews line-by-line to develop in vivo codes. Similar codes were then grouped into categories of themes (Hsieh & Shannon, 2005). Data were minimally transformed from the original text, and direct text from the interviews was used to create final themes and descriptors and organized by theoretical foci of the Theory of Dependent Care (Table 1) (Taylor et al., 2001).
The research team maintained an audit trail of coding decisions and analysis. Two researchers independently coded each interview and reviewed coding results (investigator triangulation). Interrater reliability was assessed for several frequently applied codes. These tests yielded kappa scores between 0.82 and 0.84, suggesting excellent agreement among coders. Finally, the findings were discussed with a Patient Advisory Board comprising community stakeholders, including patients and caregivers, as an additional form of member checking.
Table 2 depicts caregiver and caregiving characteristics for the 20 caregiver participants. A majority of caregivers (85%) were caring for a family member, with 13 (65%) of 20 caregivers providing care for a parent. One half of caregivers lived with the older adult. Caregivers had been caring for the older individual for a range of 3 to 36 years (mean = 14 years, SD = 13 years). Mean age of caregivers was 58 years (SD = 13 years; range = 29 to 84 years), and most participants were female (70%). Overall, participants were racially/ethnically diverse, with 40% of the sample being Black, 35% White, and 25% Hispanic/Latino ethnicity. Participants were well-educated, with 70% of caregivers having some college education. One half of the sample was still working, and 40% were retired. Regarding self-rated health, 45% of caregivers reported their health as excellent/very good, 55% reported their health as good/fair, and no caregivers reported their health as poor. Of note, all care recipients had received HCBS in the form of long-term home-based care (e.g., home health aides) either before or during the study time period.
Caregiver Characteristics (N = 20)
“Always Been Like That.” Overall, the PF needs of older adults transitioning from hospital to home were described as “not new” by caregivers since the hospitalization. One caregiver reported, “It's always been like that, for the last, I want to say about 6 years now.” However, some caregivers described the evolution and worsening of these PF issues after hospitalization, with one caregiver stating, “This is not new. It's been going on. It's getting, it's getting worse now.”
Caregivers described physiological symptoms and conditions that contributed to the worsening PF difficulties of older adults transitioning from hospital to home, including poor balance (e.g., “she has no balance”), limited strength (e.g., “She just needed help…opening things that her strength did not open anymore”), pain (e.g., “She all in pain”), and individual preferences (e.g., “…she never liked the idea of people having to help her. She always liked being independent…she didn't want it, want to not be independent like she was. That disturbed her emotionally”). Prior hospitalizations and medical procedures also contributed to progressive PF difficulty (e.g., “she done had like God knows, six or seven operations”).
Caregiving Task–Related Themes
“Everything.” Caregivers managed an assortment of basic ADL and IADL for older care recipients in the post-acute HHC setting. Older adults needed assistance with mobility, personal care (e.g., bathing), and had issues with incontinence. One caregiver summarized: “I basically gotta do everything that I would do for myself if I gotta go to the doctor, wash up, take a bath, and get dressed and stuff, I gotta do her first, then I gotta do me.” Caregivers also reported fully assisting older adults with household management (e.g., food preparation, grocery shopping, financial management).
Fighters, Watchdogs, and Chasers. In the post-acute HHC setting, caregivers “involved” themselves with physicians and other providers, giving providers feedback (e.g., “tell them when something's not right”), “writing notes,” “chasing down” health care providers and hospital staff to secure needed services and equipment (e.g., “I had to chase them down,” “get to the bottom of ”), staying abreast of what different health care providers are doing, and coordinating issues between providers. Caregivers sometimes described themselves as “watchdogs” who were “very involved” in caring for their loved ones. They kept a watchful eye and were ready to step in when necessary (e.g., “so, you know, the home health aide knows that I'm on top of her, too, there's somebody watching”).
In addition to “watchdogs,” caregivers also used the analogy of a “fight” to describe their care management efforts. One caregiver explained:
I can't share anything positive because everything positive that I have I have to fight for it, and if I have to fight for something good, I mean, the good things should come, not me fighting for it, especially with a patient like her.
“I Study Her to See How I Can Better Help Her.” To manage the complexity and variety of PF needs, caregivers used a variety of strategies. Most caregivers talked about the assistance they received from home health aides after hospitalization (e.g., “the aide does everything”). However, despite home health aides providing assistance with a majority of personal care needs during the post-acute period, caregivers were involved in managing older adults' PF needs. Several caregivers described accommodations, such as canes, walkers, wheelchairs, lifts, commodes, and disposable toilets, which they used to help older adults adapt to their home environments and cope with PF difficulties. One caregiver explained:
I…try to be informed of what's happening with her, you know, I look at her disabilities and I study her to see how I can better help her. She now needs to use the walker at home more than ever because she was using a cane before and the cane is not really helping her so the benefit of the walker at home is, it's such an excellent tool for them to use at home. So, clearing the way and getting rid of certain things that are in the way, you know, chairs and stuff like that, makes it easier for her to be able to move around with the walker.
“Confidence Comes From Experience.” Despite the challenges experienced by caregivers, overall, they felt well-prepared to care for older adults' PF needs. This sense of confidence and preparedness largely came from their experiences caring for the older individual over time (e.g., “I've known that she's been to the hospital before and I knew that when she came home, I knew like automatically what to do”), or from “years and years” of experiences caring for other family members or friends.
“Natural Instinct.” Caregivers also discussed how a “natural instinct” helped prepare them to care for the older adult. Many stated that they “know what [they] needed to do to take care” of the older care recipient. Several caregivers described their love for the older adult as a central theme in overcoming the challenges of being the primary caregiver. One caregiver stated: “L-O-V-E. You love, if you love, when you love somebody, you will make a way.” When another caregiver was asked about training to manage the complex PF needs of the older adult, the caregiver replied: “I love her, so I know her needs. I haven't received no training, and I know exactly the way she likes things to be done.” Several caregivers talked about how they know their family members' preferences and subsequently trained home health aides in these preferences (e.g., “I taught them how to prepare her meals in the way that my mother likes”). Some caregivers also described caring for their older parent in particular as an obligation or reciprocating the care the parent once provided them. One caregiver explained:
I know my mom. She take care of me when I was little, so I gotta take care of her because they become like, you know, it's my turn now. You know, when you're little, they take care of you, so now they become children. So, I gotta take care of her. She's my baby. That's how I call her, my baby.
Another caregiver summarized the importance and degree of family caregivers' involvement in managing older adults' care needs:
I think taking care of my wife down through the years, I think the best caregivers is family and your loved ones. I think that's the best medicine, I think that's the best healing, and because we have had home attendants here but she's still calling me…. So that's the confidence that sick people have when they get in that situation. They really want their loved ones to do the private stuff. They feel more comfortable.
Home Environment–Related Themes
“The Only One.” Caregivers reported receiving little assistance from other family members or friends, which left them feeling like the only person able to manage the constant PF needs of the older adult. One caregiver described her experience as “difficult because I can't go to work when she's in the hospital and she's come back from the hospital. I have to miss work because I'm the one, I'm the only one, and I don't have anybody else helping me.” Being “the only one” seemed to give caregivers a sense of loneliness, “[wanting] to do more,” and the feeling of being pulled in different directions by their responsibilities caring for the older adult, themselves, and their homes. One caregiver explained:
It was just too much because I have my husband here, and I'm not a young person either, and it was just you know, and she wants me to be there more than I can afford to be, you know…it's just my husband is pulling me on one side, she's pulling me on the other so, I'm in the middle and my brain is coming out through my head!
“A Big Relief.” Caregivers viewed the additional assistance they received from HHC in the post-acute setting as generally helpful to managing the complex PF needs of the older adult. Furthermore, existing HCBS that were in place prior to the hospitalization, and reinstated once the older adult returned home, were also perceived as being supportive. Home health aides and physical therapists were specifically identified as indispensable. In addition to attending to older adults' personal care needs, home health aides helped ensure older adults' safety and provided them “company.” However, caregivers frequently cited the need for more training for home health aides, particularly regarding how to work with older adult patients who have chronic health conditions that affect PF. One caregiver stated:
You know, she's hunched over because, of course, she's old and she has like arthritis, you know, osteoporosis also. So, she's bent forward, her back. So, I think they should, you know, prepare these people a little better to be more professional with these people that have these problems and physical disabilities...
Multiple caregivers described how home health aides from HCBS provided opportunities for respite so they could “go to the store, go shopping, or whatever I do.” One caregiver said, “Well, if I'm being perfectly honest, the home health aide is really a blessing because if she wasn't here, I wouldn't be able to work and that would have been a big problem.” Another caregiver explained:
…the aide assisted me [by] actually being there and helping my mother, taking care of her. That was a big relief. If I didn't have that, I would have gone nuts because I have to work myself to support myself and help my mother. You know, it's very costly to maintain two households, so having the home attendants for me has been a big, big plus.
Many caregivers also had positive comments on the teaching and assistance they received from physical therapy. Caregivers described how physical therapists exercised older adults and taught them how to “continue doing what they [physical therapists] were doing” after the patient was discharged from physical therapy. Caregivers were grateful for the different strategies physical therapists taught them and the older adult for how to accommodate and manage PF issues. One caregiver listed various ways physical therapy helped: “[the older adult] had to learn how to get in and out of the bathtub…walk properly…. The side of her walker had to be adjusted cause there was a whole bunch of things the therapist helped with.” Another caregiver explained:
Well, I mean, like I said, my mom is bedridden. Her physical therapist, he showed her other ways how she can get up out of the bed and sit up out of the bed without causing herself too much pain because she suffers from back pain so it's very difficult for her to sit up. But, like I said, he showed her ways and how to do it, and she's sitting up now by herself…. She can get up and sit up on the side of the bed by herself, so I owe that to him. And I'm very grateful for that because, like I said, he worked with her.
Although HHC services were generally perceived as helpful in managing PF needs in the post-acute setting, many caregivers had concerns regarding the amount of services received. The frequency and length of time that caregivers received HHC services varied across interviewees, among whom some reported daily support whereas others perceived themselves to be on their own. HHC services were perceived as short-lived (e.g., “No, they weren't there that long”), and several caregivers reported needing “more help.” Some caregivers described taking whatever assistance they could secure, often settling for less than they actually needed. One caregiver explained: “So you take a half a loaf, half bread, piece of bread than if you don't have the whole one you just take the half.”
Rich descriptions of caregivers' experiences managing a range of PF needs in the post-acute HHC setting were uncovered. Although there have been similar explorations of caregivers' experiences in specific clinical conditions (Ang, Lang, Ang, & Lopez, 2016; Jack, Mitchell, Cope, & O'Brien, 2016) and other settings (Dossa et al., 2012; Lutz et al., 2017), the post-acute HHC setting is notable due to the nature and frequency of contact among HHC providers, caregivers, and patients to promote stabilization and recovery. The post-acute HHC setting also presents opportunities for nurses to prepare caregivers for the transition to discharge from post-acute care. The Theory of Dependent Care emphasizes the assessment and engagement of patients and caregivers to successfully manage care needs. By employing this framework, and interweaving caregiver-related themes across patient-, caregiving task–, and home environment–related themes, the current study facilitates identification of areas in which nurses and other HHC providers can target caregiving training and support strategies during a common care transition for older adults.
In the patient-related theme, caregivers highlighted the static and dynamic nature of PF needs for older patients in the post-acute HHC setting. Although most caregivers believed that the PF needs were ongoing and chronic, there were instances where older patients' functional status had worsened after hospitalization. Importantly, caregivers expressed interest in learning the safest and most efficient ways to manage these new and ongoing care needs, and some may need additional training in the post-acute setting (Shyu, 2000). Although many caregivers actively seek information on their own, receiving information and training from HHC staff on managing care in the post-acute period is associated with reduced caregiver burden (Weaver, Perloff, & Waters, 1998). Thus, HHC nurses need to be alert to changes in older adults' PF, especially after care transitions, such as a recent hospitalization, and adapt training and support to assess and address caregivers' new and ongoing needs.
Within the caregiving tasks–related theme, caregivers described the enormity of their caregiving tasks in the post-acute HHC setting. All caregivers in the sample received HCBS and HHC, including longer-term home health aide assistance. Nevertheless, caregivers in the current study were highly engaged in managing care needs in the post-acute HHC setting, which is consistent with past research examining caregivers' perspectives during other care transitions (Hahn-Goldberg et al., 2018). In addition to providing direct physical care, caregivers were overseeing home health aides' activities and educating them in patients' preferences. Nurses can leverage caregivers' existing knowledge regarding older adults' health history and preferences to anticipate care needs and provide practical, tailored information to manage these individuals (Mitchell et al., 2018). Caregivers also coordinated appointments, obtained equipment, and communicated with providers. However, many caregivers described coordinating care as a struggle or fight. Dossa et al. (2012) identified communication issues—among providers, patients, and caregivers—as primary contributors to challenges patients and caregivers experience during care transitions. To reduce caregivers' stress of managing complex care needs in the post-acute setting, nurses should ensure caregivers are well-integrated and well-informed of the older patient's plan of care (Foust et al., 2012). Nurses can also facilitate obtaining the supports and equipment needed for PF needs, which can positively impact caregiver preparedness and reduce caregiver strain (Toye et al., 2016).
Caregivers in the current study received little assistance from other family or friends. Encapsulated by the words “the only one,” many caregivers perceived their intense caregiving role as a solitary endeavor. As such, caregivers described the challenges of balancing the care for the older adult with their own health needs and family and work responsibilities. Past experiences and a sense of love and obligation for care recipients helped prepare caregivers to manage the complex PF needs in the post-acute HHC setting. Prior research also suggests that caregivers are able to reconcile the management of diverse care needs by drawing on the confidence of their experiences (Byrne, Orange, & Ward-Griffin, 2011). Nevertheless, caregivers' well-being is associated with patient outcomes, such as symptom expression and quality of life (Bidwell, Lyons, & Lee, 2017). Caregivers of older adults transitioning from hospital to home are especially vulnerable to the physical and emotional effects of stress associated with balancing life responsibilities with evolving caregiving activities (Hajek & König, 2016). Thus, when evaluating patients, HHC nurses should also incorporate an assessment of caregivers' psychosocial and physical health status to identify those who may need additional supports and services, referral to health care providers for their own health issues, or even to discontinue their caregiving role.
Most caregivers perceived post-acute HHC services as highly beneficial in helping with the reported challenges managing the PF needs of older adults. Caregivers were generally receptive and appreciative of the training received from HHC providers. Nevertheless, caregivers provided some insight into possible areas for improvements in HHC services. One recurring issue mentioned among caregivers was that they believed that HHC services were too short, leaving them in a position where they scrambled to fill gaps in care, often providing needed care themselves. Decision-support tools could enhance determinations of when to discharge patients from HHC services (O'Connor, Moriarty, Madden-Baer, & Bowles, 2016) and to identify patients who may need longer term services and supports. In addition, diverse interventions to enhance support and training could be implemented to better prepare caregivers for the completion of post-acute HHC services. Such interventions may include caregiver workshops to enhance training and preparedness (Leutz et al., 2002), connecting caregivers with internet resources (Stone, 2014), telephone follow up by nursing staff after discontinuation of HHC services (Feld, Madden-Baer, & McCorkle, 2016), and the use of telemedicine for ongoing evaluation of older adults' health (Lindauer et al., 2017).
The current study had some important limitations. Caregivers were recruited from a single HHC agency in the northeast, which may limit transferability of study findings to other groups across the nation. The study sample was small; however, data saturation was achieved. Although a racially/ethnically diverse sample was recruited, most caregiver participants were female. A majority of caregivers are female (AARP Public Policy Institute & National Alliance for Caregiving, 2015), which may account for the difficulty in recruiting more men for the study. Nevertheless, research regarding the experiences of male caregivers of older adults is growing, and future qualitative work should incorporate the voices of this underrepresented group of caregivers.
All caregiver participants in the current study were experienced, having cared for the older adult for several years. This characteristic was expected due to recruitment of caregivers of HHC patients who were older and likely had multiple chronic conditions. Thus, findings from this study may differ for newer or less experienced caregivers. Purposive sampling methods designed to select less experienced caregivers may be needed to increase representation of this population and give voice to their unique training and support needs during the post-acute period. In addition, examining different stressors by work status could provide greater insight into unique issues faced by working and non-working caregivers.
The current study specifically focused on PF needs. Caregivers also reported difficulties managing additional caregiving activities, especially medical–nursing tasks. Future research should address the perceptions of caregivers in performing these tasks and in the receipt of training and support for these tasks in the HHC setting. This added information would be useful for identifying important training gaps for caregivers managing complex care needs of older adults in the post-acute setting.
Caregivers play an active and critical role in managing the PF needs of older adults who return home after hospitalization. Nurses delivering care in the post-acute setting are uniquely poised to train and support caregivers. Understanding caregivers' perceptions of their activities and role in managing PF needs for older adults across care transitions can inform future research and practice in the post-acute HHC setting.
- AARP Public Policy Institute, & National Alliance for Caregiving. (2015). Caregiving in the U.S. Retrieved from http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
- Alliance for Home Health Quality and Innovation. (2017). Home health chartbook 2017. Retrieved from http://ahhqi.org/images/uploads/AHHQI_2017_Chartbook_PREVIEW.pdf
- Ang, W.H.D., Lang, S.P., Ang, E. & Lopez, V. (2016). Transition journey from hospital to home in patients with cancer and their caregivers: A qualitative study. Supportive Care in Cancer, 24, 4319–4326. doi:10.1007/s00520-016-3269-0 [CrossRef]
- Archbold, P.G., Stewart, B.J., Greenlick, M.R. & Harvath, T. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing & Health, 13, 375–384. doi:10.1002/nur.4770130605 [CrossRef]
- Bidwell, J.T., Lyons, K.S. & Lee, C.S. (2017). Caregiver well-being and patient outcomes in heart failure: A meta-analysis. Journal of Cardiovascular Nursing, 32, 372–382. doi:10.1097/JCN.0000000000000350 [CrossRef]
- Byrne, K., Orange, J.B. & Ward-Griffin, C. (2011). Care transition experiences of spousal caregivers: From a geriatric rehabilitation unit to home. Qualitative Health Research, 21, 1371–1387. doi:10.1177/1049732311407078 [CrossRef]
- Callahan, C.M., Unverzagt, F.W., Hui, S.L., Perkins, A.J. & Hendrie, H.C. (2002). Six-item screener to identify cognitive impairment among potential subjects for clinical research. Medical Care, 40, 771–781. doi:10.1097/00005650-200209000-00007 [CrossRef]
- Chase, J.D., Lozano, A., Hanlon, A. & Bowles, K.H. (2018). Identifying factors associated with mobility decline among hospitalized older adults. Clinical Nursing Research, 27, 81–104. doi:10.1177/1054773816677063 [CrossRef]
- Cho, E., Kim, E.Y. & Lee, N.J. (2013). Effects of informal caregivers on function of older adults in home health care. Western Journal of Nursing Research, 35, 57–75. doi:10.1177/0193945911402847 [CrossRef]
- Coleman, E.A. & Roman, S.P. (2015). Family caregivers' experiences during transitions out of hospital. Journal for Healthcare Quality, 37, 12–21. doi:10.1097/01.JHQ.0000460117.83437.b3 [CrossRef]
- Dossa, A., Bokhour, B. & Hoenig, H. (2012). Care transitions from the hospital to home for patients with mobility impairments: Patient and family caregiver experiences. Rehabilitation Nursing, 37, 277–285. doi:10.1002/rnj.047 [CrossRef]
- Elo, S. & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62, 107–115. doi:10.1111/j.1365-2648.2007.04569.x [CrossRef]
- Feld, A., Madden-Baer, R. & McCorkle, R. (2016). Evolution of a 90-day model of care for bundled episodic payments for congestive heart failure in home care. Home Health Care Services Quarterly, 35(2), 53–68. doi:10.1080/01621424.2016.1184737 [CrossRef]
- Foust, J.B., Vuckovic, N. & Henriquez, E. (2012). Hospital to home health care transition: Patient, caregiver, and clinician perspectives. Western Journal of Nursing Research, 34, 194–212. doi:10.1177/0193945911400448 [CrossRef]
- Gibson, M.J., Kelly, K.A. & Kaplan, A.K. (2012). Family caregiving and transitional care: A critical review. Retrieved from https://www.caregiver.org/sites/caregiver.org/files/pdfs/FamCGing_TransCare_CritRvw_FINAL10.31.2012.pdf
- Gill, T.M., Allore, H., Holford, T.R. & Guo, Z. (2004). The development of insidious disability in activities of daily living among community-living older persons. American Journal of Medicine, 117, 484–491. doi:10.1016/j.amjmed.2004.05.018 [CrossRef]
- Giosa, J.L., Stolee, P., Dupuis, S.L., Mock, S.E. & Santi, S.M. (2014). An examination of family caregiver experiences during care transitions of older adults. Canadian Journal on Aging, 33, 137–153. doi:10.1017/S0714980814000026 [CrossRef]
- Hahn-Goldberg, S., Jeffs, L., Troup, A., Kubba, R. & Okrainec, K. (2018). “We are doing it together”: The integral role of caregivers in a patient's transition home from the medicine unit. PLoS One, 13, e0197831. doi:10.1371/journal.pone.0197831 [CrossRef]
- Hajek, A. & König, H.H. (2016). Informal caregiving and subjective well-being: Evidence of a population-based longitudinal study of older adults in Germany. Journal of the American Medical Directors Association, 17, 300–305. doi:10.1016/j.jamda.2015.10.015 [CrossRef]
- Hsieh, H.F. & Shannon, S.E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. doi:10.1177/1049732305276687 [CrossRef]
- Jack, B.A., Mitchell, T.K., Cope, L.C. & O'Brien, M.R. (2016). Supporting older people with cancer and life-limiting conditions dying at home: A qualitative study of patient and family caregiver experiences of Hospice at Home care. Journal of Advanced Nursing, 72, 2162–2172. doi:10.1111/jan.12983 [CrossRef]
- Leutz, W., Capitman, J., Ruwe, M., Ching, V.N., Flaherty-Robb, M., McKenzie, M. & Lee, W. (2002). Caregiver education and support: Results of a multi-site pilot in an HMO. Home Health Care Services Quarterly, 21(2), 49–72. doi:10.1300/J027v21n02_04 [CrossRef]
- Lincoln, Y.S. & Guba, E.G. (1985). Naturalistic inquiry. Thousand Oaks, CA: Sage.
- Lindauer, A., Seelye, A., Lyons, B., Dodge, H.H., Mattek, N., Mincks, K. & Erten-Lyons, D. (2017). Dementia care comes home: Patient and caregiver assessment via telemedicine. The Gerontologist, 57, e85–e93. doi:10.1093/geront/gnw206 [CrossRef]
- Lutz, B.J., Young, M.E., Creasy, K.R., Martz, C., Eisenbrandt, L., Brunny, J.N. & Cook, C. (2017). Improving stroke caregiver readiness for transition from inpatient rehabilitation to home. The Gerontologist, 57, 880–889. doi:10.1093/geront/gnw135 [CrossRef]
- Mitchell, S.E., Laurens, V., Weigel, G.M., Hirschman, K.B., Scott, A.M., Nguyen, H.Q. & Jack, B.W. (2018). Care transitions from patient and caregiver perspectives. Annals of Family Medicine, 16, 225–231. doi:10.1370/afm.2222 [CrossRef]
- Murtaugh, C., Peng, T., Totten, A., Costello, B., Moore, S. & Aykan, H. (2009). Complexity in geriatric home healthcare. Journal for Healthcare Quality, 31(2), 34–43. doi:10.1111/j.1945-1474.2009.00017.x [CrossRef]
- Neergaard, M.A., Olesen, F., Andersen, R.S. & Sondergaard, J. (2009). Qualitative description: The poor cousin of health research?BMC Medical Research Methodology, 9, 52. doi:10.1186/1471-2288-9-52 [CrossRef]
- O'Connor, M., Moriarty, H., Madden-Baer, R. & Bowles, K.H. (2016). Identifying critical factors in determining discharge readiness from skilled home health: An interprofessional perspective. Research in Gerontological Nursing, 9, 269–277. doi:10.3928/19404921-20160930-01 [CrossRef]
- Orem, D.E. (1985). A concept of self-care for the rehabilitation client. Rehabilitation Nursing, 10(3), 33–36. doi:10.1002/j.2048-7940.1985.tb00428.x [CrossRef]
- Peng, T.R., Navaie-Waliser, M. & Feldman, P.H. (2003). Social support, home health service use, and outcomes among four racial-ethnic groups. The Gerontologist, 43, 503–513. doi:10.1093/geront/43.4.503 [CrossRef]
- Polit, D.F. & Beck, C.T. (2014). Essentials of nursing research: Appraising evidence for nursing practice. Wolters Kluwer Health/Lippincott Williams & Wilkins.
- Reinhard, S.C., Levine, C. & Samis, S. (2012). Home alone: Family caregivers providing complex chronic care. Retrieved from https://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/home-alone-family-caregivers-providing-complex-chronic-care-rev-AARP-ppi-health.pdf
- Sandelowski, M. (2009). What's in a name? Qualitative description revisited. Research in Nursing & Health, 33, 77–84. doi:10.1002/nur.20362 [CrossRef]
- Shyu, Y.I. (2000). The needs of family caregivers of frail elders during the transition from hospital to home: A Taiwanese sample. Journal of Advanced Nursing, 32, 619–625. doi:10.1046/j.1365-2648.2000.01519.x [CrossRef]
- Solan, L.G., Beck, A.F., Brunswick, S.A., Sauers, H.S., Wade-Murphy, S., Simmons, J.M. & Sherman, S.N. (2015). The family perspective on hospital to home transitions: A qualitative study. Pediatrics, 136, e1539–e1549. doi:10.1542/peds.2015-2098 [CrossRef]
- Stone, K. (2014). Enhancing preparedness and satisfaction of caregivers of patients discharged from an inpatient rehabilitation facility using an interactive website. Rehabilitation Nursing, 39(2), 76–85. doi:10.1002/rnj.123 [CrossRef]
- Taylor, S.G., Renpenning, K.E., Geden, E.A., Neuman, B.M. & Hart, M.A. (2001). A theory of dependent-care: A corollary theory to Orem's theory of self-care. Nursing Science Quarterly, 14(1), 39–47. doi:10.1177/08943180122108030 [CrossRef]
- Toye, C., Parsons, R., Slatyer, S., Aoun, S.M., Moorin, R., Osseiran-Moisson, R. & Hill, K.D. (2016). Outcomes for family carers of a nurse-delivered hospital discharge intervention for older people (the Further Enabling Care at Home Program): Single blind randomised controlled trial. International Journal of Nursing Studies, 64, 32–41. doi:10.1016/j.ijnurstu.2016.09.012 [CrossRef]
- Weaver, F.M., Perloff, L. & Waters, T. (1998). Patients' and caregivers' transition from hospital to home: Needs and recommendations. Home Health Care Services Quarterly, 17(3), 27–48. doi:10.1300/J027v17n03_03 [CrossRef]
Sample Caregiver Questions Modeled After Theory of Dependent Care
|Patient||Could you tell me about X's recent hospital stay?|
|Caregiving tasks||After X came home from the hospital, what activities did X need help with?|
|Caregiver||I would like you to think about the time after the home care provider left. What were your reactions after the home care provider left?
What were any barriers to being prepared to care for/help X?
What were the things that helped you be prepared to care for X?
Probe: Were you confident about caring for X? Probe: Did you have some remaining questions or concerns? If so, what were they?
Probe: Did you understand the plan for X's care?
|Home environment||How involved were other family members and/or friends during this time?|
Caregiver Characteristics (N = 20)
|Age (mean [SD] [range])||58 (13) (29 to 84)|
|Gender (n, %)|
| Female||14 (70)|
| Male||6 (30)|
|Married (n, %)||7 (35)|
|Race/ethnicity (n, %)|
| Black||8 (40)|
| White||7 (35)|
| Hispanic/Latino||5 (25)|
|Education (n, %)|
| Some high school, did not graduate||1 (5)|
| High school or GED||5 (25)|
| Some college or 2-year degree||7 (35)|
| College graduate||3 (15)|
| Post-graduate||4 (20)|
|Employment status (n, %)|
| Retired||8 (40)|
| Working full-time||9 (45)|
| Working part-time||1 (5)|
| Unemployed||2 (10)|
|Self-reported health (n, %)|
| Excellent/very good||9 (45)|
| Good/fair||11 (55)|
|Care recipient (n, %)|
| Parent||13 (65)|
| Spouse||1 (5)|
| Sibling||3 (15)|
| Other||3 (15)|
|Lives with care recipient (n, %)||10 (50)|
|Years providing care (mean [SD] [range])||14 (13) (3 to 36)|