The United States is beginning to experience a dramatic increase in the population of older people. The U.S. Census Bureau (Colby & Ortman, 2015) projects that people 65 and older will comprise approximately 21% of the population in 2030, up from 15% in 2014. Many of these older adults live active and independent lives requiring no assistance from others. However, 12% of community-dwelling older adults require assistance with at least one instrumental activity of daily living (IADL) and 32% require assistance with at least one activity of daily living (ADL) (Federal Interagency Forum on Aging-Related Statistics, 2016). The amount of assistance needed increases with age and number of chronic conditions (Federal Interagency Forum on Aging-Related Statistics, 2016).
When needed, families provide an average of 24 hours of care per week; 10% of family caregivers are themselves 75 or older and are caring for a spouse (National Alliance for Caregiving & AARP, 2015). The scope of care provided by families in the community setting extends beyond assisting with ADLs and IADLs. They spend a great deal of time overseeing care, communicating with health care professionals and providing information (Bookman & Harrington, 2007), administering treatments and medications (Donelan et al., 2002), and coordinating care and problem solving (Wilkins et al., 2009). Little is known about how family caregivers' roles are affected during the hospitalization of an older family member. Thus, the purpose of the current study was to better understand how families continue in their caregiving roles while their older family members are hospitalized.
Although research on family caregiving has expanded over the past 20 years, research examining activities in which family caregivers participate with an older, cognitively intact, hospitalized relative is limited. Such research has generally focused in three areas: providing emotional and social support, providing assistance with ADLs and IADLs, and, to a lesser extent, monitoring care. Family caregivers frequently provide emotional and social support (Auslander, 2011; Cohen et al., 2010). Macleod et al. (2005) reported that 83% of family caregivers visited hospitalized older relatives daily and helped maintain social connections by communicating relevant information to and from other family members (Jacelon, 2006). Family caregivers also maintained daily routines and responsibilities by bringing the mail or a favorite meal (Macleod et al., 2005), managing their older relatives' households, and taking care of their pets (Jacelon, 2006). Family caregivers commonly reported helping with ADLs and IADLs during hospitalization, frequently assisting with eating and drinking (Macleod et al., 2005; Pena & Diogo, 2009) and medications (Auslander, 2011). A small number of studies included activities such as participating in decision making (Jacelon, 2006; Li et al., 2000), advocating (Jacelon, 2006; Lindhardt et al., 2006), and monitoring care (Auslander, 2011; Cohen et al., 2010). Li et al. (2000) and Li (2005) described an expanded scope of activities performed by family caregivers that involved sharing information with nurses and physicians, assisting nurses in providing care, observing nurses, and learning how to provide care.
A descriptive design was used to answer the research question: “What care activities did family caregivers provide for their older relatives during hospitalization?” A secondary analysis of data from a large intervention study titled CARE: Creating Avenues for Relative Empowerment (Li et al., 2012) was conducted to answer the research question.
The purpose of the CARE study (Li et al., 2012) was to evaluate the impact of a theoretically driven, family caregiver–focused intervention on outcomes of hospitalized older adults and their primary family caregivers. Data were collected from May 2003 through April 2006. The study took place in a large, urban medical center in the eastern United States. The sample was drawn from older adults admitted to general surgery, orthopedics, and vascular units. Sample criteria were age 65 or older, admitted within the previous 24 to 48 hours, and expected to stay in the hospital for at least 4 days. Hospitalized older adults identified their primary family caregivers, which included spouses, children, other blood relatives, and non-related persons. Primary family caregivers were included if they were 21 or older, able to speak and read English, and lived within 1 hour of the medical center. Caregivers who were paid, unable to complete the questionnaires, or unable to provide care because of their own mental or physical impairments were excluded. Older adults who had participated in the CARE pilot study, lived in a long-term care facility, had a diagnosis of dementia, or were receiving hospice services were excluded. Informed consent was obtained from the caregiver and hospitalized older relative. Data were collected from family caregivers and/or older relatives at two time points during hospitalization and two time points after hospital discharge. Data were collected via interviews and questionnaires. The Research Subjects Review Board of the University of Rochester approved the CARE study.
Current Study Sample
The current study sample comprised 293 of the 407 family caregivers in the CARE study. Participants from the CARE study were included in the current study if they had completed the Family Care Actions Index (FCAI) administered during hospitalization and after discharge. Demographic data were extracted for family caregivers and their hospitalized older relatives, along with data pertaining to the FCAI. The Research Subjects Review Board of the University of Rochester granted approval for exemption for the current study.
Family Care Actions Index
The FCAI is a measure of what family caregivers do or say regarding their hospitalized older relatives (Li et al., 2000). The index comprises 70 yes/no items pertaining to the hospitalization and 11 yes/no items pertaining to discharge. An example of an item is “I helped my relative with walking.” Scores on the FCAI are determined by summing the checked responses. The possible range of scores is 0 to 81, with higher scores indicating more actions by family caregivers. In the development of the FCAI, Li et al. (2000) identified three major dimensions from the 81 items. These dimensions were: (1) providing care to the patient (45 items), (2) working together with the health care team (31 items), and (3) taking care of self (five items).
Data were analyzed using SPSS version 19.0. Frequency distributions were done for each item on the FCAI and then rank ordered from most to least frequently performed. Scale statistics for the FCAI and each of the three dimensions of the FCAI were calculated and are shown in Table 1. Reliability was calculated using the Kuder-Richardson (KR20) coefficient.
Family Care Actions Index (FCAI) Scores (N = 293)
Demographic data for family caregivers are shown in Table 2. More than one half of family caregivers were younger than 65 and 43.7% were 65 or older. Approximately three quarters were female, Caucasian, and married; one half were retired but one third reported working full-time. Approximately one half were the spouse of the hospitalized older adult and 43.2% were a child.
Family Caregiver Demographics (N = 293)
Demographic data for the hospitalized older adults are shown in Table 3. Equal numbers of older adults were between ages 65 and 74 and 75 and 84 (43.3% each); 13% were older than 85. Gender was split approximately evenly, the majority were Caucasian and married, and less than one half had completed college and a substantial number had not completed high school.
Hospitalized Older Adult Demographics (N = 293)
Figure A (available in the online version of this article) shows the frequency of care actions performed, from most to least often, pertaining to Dimension 1 - Providing Care to the Patient. The caregiving actions reported most often entailed keeping their older relatives company (96.9%) followed closely by giving emotional support (95.5%). Assisting with ADLs ranged from 75% of family caregivers assisting with drinking to 25% assisting with bathing or showering. Less than 25% of caregivers reported helping take medications, pushing the wheelchair, taking their relative to do something enjoyable, and reading religious materials.
Family Caregivers who Engaged in “Providing Care to the Patient” (N = 293)
Figure B (available in the online version of this article) shows the frequency of care actions performed in Dimension 2 – Working Together With the Health Care Team. Approximately 94% of caregivers reported ensuring their relative was comfortable and his/her needs were met. Less than 25% of caregivers reported that they informed nurses about what personal care their older relative could complete, kept track of oral intake, informed nurses how to meet special needs, and informed nurses what they did at home for their relative.
Family Caregivers who Engaged in “Working Together with the Health Care Team” (N = 293)
Items from Dimension 3 – Taking Care of Self pertained to family caregivers. Seventy-three percent made sure to eat well, 62% took a break during the day while they were at the hospital, 57% left the hospital early so they could get home and relax, 40% asked a friend or relative to come by, and 40% asked other relatives to do things for them so that they could stay at the hospital.
The focus of the current study was to examine how families continue in their caregiving roles when older relatives are hospitalized. Results indicated that a large number of family caregivers provide a variety of caregiving activities during hospitalization. Activities frequently centered around providing comfort, supporting connections with the outside world, and maintaining routines. Assisting with personal care, either directly (e.g., helping with drinking and eating) or indirectly (e.g., bringing clothes that were easy to put on) was also frequently done. These findings are consistent with earlier studies showing high levels of social engagement and support by caregivers (Jacelon, 2006; Penn & Diogo, 2009). Activities such as keeping older relatives company, talking with them, arranging for visitors, and assisting with drinking and eating can be beneficial for hospitalized older adults. These care activities represent interventions that have been shown to decrease delirium in hospitalized older patients and hasten healing. Boltz et al. (2014) found that delirium was less severe and of shorter duration when families were engaged in the care of hospitalized older adults.
The focus of most previous studies has been limited to visiting, providing emotional support, and assisting with ADLs. The current study demonstrated an expanded scope of family caregiving in the hospital that had not been previously described. A large percentage of family caregivers reported participating in many activities that required more active interaction, bidirectional exchange of information, and coordination of care with the health care team directly. Caregivers collaborated with the health care team by providing valuable information about their older relatives, advocated and participated in decisions about care, kept track of pertinent information, facilitated and coordinated discharge and post hospital care, and made sure that care provided was effectively meeting the needs of their older relatives. In doing so, family caregivers supported the hospital team to provide the best care possible. Family caregivers routinely manage similar activities outside the hospital. These care activities are likely a natural carry over for family caregivers to the hospital setting.
Other studies have shown the benefits of family caregiver involvement including improved quality and safety, better patient outcomes, and improved patient satisfaction (Agency for Healthcare Research and Quality, 2013). Patient safety is an important aspect of hospital care for which family caregivers can play a critical role. Kaiser (a physician) and Kaiser (a social worker) (2017), in their account of a hospitalization of their 90-year-old mother, poignantly described how they encountered and were able to address medication errors, under-treatment of pain, lack of follow up of tests, poor fall prevention, and inappropriate discharge planning. By being active, engaged, and vigilant, they were able to navigate the many obstacles of the hospitalization, and their mother eventually returned home. Their experience demonstrates how engaged family caregivers can be empowered when they accompany older relatives to the hospital.
There are several limitations in the current study. The self-report method was used to collect data on the FCAI. It is possible that family caregivers did not always recall their experiences accurately, thus their responses may not have been reflective of actual behavior. In addition, the FCAI does not currently allow for the collection of data related to the intensity of family caregiver involvement. In the future, it would be valuable to collect data at more frequent intervals and ask family caregivers to report the number of times each care activity was performed.
If given the opportunity, families can be valuable partners with the health care team to facilitate high-quality care, positive outcomes, and patient and family satisfaction. They can serve as valuable eyes and ears for staff who are unfamiliar with older patients. Staff, particularly nurses who have the most interaction with patients and families, can develop a partnership with family caregivers rather than view them simply as visitors. They can assess caregivers' willingness to participate in care using assessment tools such as the Family Preferences Index (Messecar et al., 2008). Nurses can educate and encourage family caregivers in basic strategies as well as other, targeted interventions that would positively impact care and reduce length of stay. Family caregivers may be willing to assist with therapeutic activities, such as coughing and deep breathing exercises, range of motion, ambulation, encouraging intake of fluids and food, and reporting symptoms, if these were activities they provided at home. Evidence shows that involving family caregivers in the discharge process can have a significant impact on outcomes. A meta-analysis by Rodakowski et al. (2017) demonstrated that caregiver involvement in the discharge process was associated with 25% fewer 90-day hospital readmissions and 24% fewer 180-day hospital readmissions. Discharge is another area where nurses could partner with caregivers to improve care.
Findings from this study provide a number of opportunities for further research. There may be a variety of individual factors that influence family caregiver participation during hospitalization including knowledge, preferences, gender, ethnicity, and relationship between caregiver and care recipient. Examining the influence of these and other factors could provide the basis for developing interventions to support partnerships between hospitalized older adults, their caregivers, and hospital staff. Building on the framework proposed by Carman et al. (2013), interventions to support family caregiver partnerships in health care could also be identified and initiated at organizational, national, and community levels. Of particular importance would be to evaluate whether organizational policies and practices support family caregiver partnerships and to identify necessary changes and resources that are needed for successful partnerships.
The current study demonstrates that many family caregivers provide a considerable amount and wide scope of care activities when an older family member is hospitalized. These care activities encompass providing care directly to the patient as well as working together with the health care team. Nurses are in a unique position to partner with family caregivers to enhance quality, safety, and satisfaction for older adults admitted to the hospital and their family caregivers.
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Family Care Actions Index (FCAI) Scores (N = 293)
|Scale||Mean Score (SD) (Range)||Reliability|
|FCAI (81 items)||46.6 (13.8) (10 to 76)||0.93|
|Dimension 1 – Providing care to patient (45 items)||26.3 (7.4) (7 to 43)||0.87|
|Dimension 2 – Working together with the health care team (31 items)||17.6 (6.6) (2 to 31)||0.89|
|Dimension 3 – Taking care of self (5 items)||2.7 (1.4) (0 to 5)||0.54|
Family Caregiver Demographics (N = 293)
|Age (mean, SD, range) (years)||60.9 (13.19) (25 to 90)|
| 25 to 44||35 (11.9)|
| 45 to 64||130 (44.4)|
| 65 to 84||123 (42)|
| ≥85||5 (1.7)|
| Female||211 (72)|
| Male||82 (28)|
|Race (n = 292)|
| White||263 (90)|
| African American||22 (7.5)|
| Other||7 (2.4)|
|Marital status (n = 291)|
| Married||218 (74.9)|
| Never married||33 (11.3)|
| Divorced||24 (8.2)|
| Separated||9 (3.1)|
| Widowed||7 (2.4)|
|Income (n = 253)|
| <$5,000||2 (0.8)|
| $5,000 to $9,999||9 (3.6)|
| $10,000 to $19,999||18 (7.1)|
| $20,000 to $49,000||98 (38.7)|
| ≥$50,000||126 (49.8)|
|Education (n = 292)|
| Graduate/professional training||75 (25.7)|
| Completed college||84 (28.8)|
| Partial college training||63 (21.6)|
| Completed high school||60 (20.5)|
| Completed less than high school||10 (3.4)|
|Employment (n = 286)|
| Retired||143 (50)|
| Full-time||84 (29.4)|
| Part-time||44 (15.4)|
| Never been employed||10 (3.5)|
| Not currently employed||5 (1.7)|
|Relationship to hospitalized relative|
| Wife or husband||138 (47.1)|
| Son or daughter||124 (42.3)|
| Other relative||18 (6.1)|
| Other non-relative||13 (4.4)|
Hospitalized Older Adult Demographics (N = 293)
|Age (years) (mean, SD, range)||76.2 (7.15) (65 to 96)|
| 65 to 74||127 (43.3)|
| 75 to 84||127 (43.3)|
| ≥85||39 (13.3)|
| Female||154 (52.6)|
| Male||139 (47.4)|
|Race (n = 292)|
| White||263 (90)|
| African American||23 (7.9)|
| Other||6 (2)|
|Marital status (n = 291)|
| Married||178 (61)|
| Widowed||90 (30.9)|
| Divorced||12 (4.1)|
| Never married||8 (2.7)|
| Separated||3 (1)|
|Education (n = 292)|
| Graduate/professional training||47 (16.1)|
| Completed college||56 (19.2)|
| Partial college training||44 (15.1)|
| Completed high school||84 (28.8)|
| Completed less than high school||61 (20.9)|