Transitions in later life may result in increased vulnerability for older adults, especially during care transitions between residential and/or health care settings (Coleman, 2003; Naylor, Kurtzman, & Pauly, 2009). Poor care transitions may result in adverse and costly outcomes such as medication errors, hospital readmissions, and caregiver stress (Graham, Ivey, & Neuhauser, 2009). For newly admitted residents to institutional settings, the admissions process is often chaotic, and incomplete information can limit the ability of staff to understand and care of new clients. Studies suggest that a lack of communication in care planning and insufficient preparation may result in difficulties for both patients and caregivers (Coleman, 2003; Naylor & Keating, 2008). For those with cognitive limitations, transitions may heighten confusion, agitation, and risk for falls, as well as lower quality of end-of-life care (Gonzalo et al., 2011). The need for accurate and thorough assessment is especially important during transitions in care. The purpose of this study was to develop a brief admissions screening tool that could be administered to family caregivers to help identify older adults who may be at risk of adverse reactions to care.
Adverse reactions to care for older adults have, at times, been labeled resistance to care, challenging behaviors, and noncompliance. These can include emotional responses (e.g., crying out); physical responses (e.g., hitting); social responses (e.g., isolating oneself); and functional responses (e.g., resisting assistance with activities of daily living; Emerson & Einfeld, 2011). Originating in the dementia care literature, adverse reactions to care are now viewed as communication of unmet need, pain, discomfort, confusion, or preference. Hearing and interpreting this communication is critical to providing person-centered care and removing triggers of adverse reactions to care (Kitwood, 1997).
Although current admission assessment tools have been standardized for use in nursing homes, questions remain as to whether these tools adequately assess for triggers of adverse reactions to care. The Minimum Data Set (MDS) is a set of standardized screening tools that are administered to nursing home residents and are used to inform residents’ care plans. Although comprehensive, the MDS contains only one item that asks about physical and verbal behavior directed toward others and one item that asks about a resident’s rejection of care. Unfortunately, nursing homes have 14 days to complete the MDS, which can leave staff unprepared to anticipate care activities that might trigger adverse reactions (Centers for Medicaid & Medicare Services, 2012). In assisted living and adult day services, standardized assessments are not required by federal law and assessment of residents is generally far less comprehensive. Unfortunately, communication between staff and families can be a challenge and it may take weeks or months for information to surface.
Although not widely in clinical use, several measures have been developed for research on challenging behaviors and caregiver reactions, such as the Revised Memory and Behavior Checklist (Teri et al., 1992). Other scales have been developed to measure agitation, most notably the Cohen-Mansfield Agitation Inventory (Cohen-Mansfield, Marx, & Rosenthal, 1989). Unfortunately, these scales are either unwieldy in clinical settings or fail to take into account the nature and the environment of care in institutional settings. These scales also tend to focus on the types and frequency of behaviors rather than the triggers that preclude these behaviors. As such, developing a simple tool that could be administered to family caregivers to assess for triggers to adverse care may be beneficial in the planning of timely, sensitive, and person-centered care.
The study was approved by the university institutional review board prior to commencing. In the development of the current scale, the researchers drew on the afore-mentioned measures as well as the literature on adverse reactions to care (David & Pelly, 2003). The researchers presented an initial pool of items to a review group of family caregivers and professionals, including nurses, social workers, and program administrators. The goal was to produce a scale that was brief (10 items or less) and could be administered to caregivers by a variety of professionals during admission. Using feedback from this group, the researchers created an initial pool of nine items for testing in the current study. In the scale, respondents were asked “How often does the care recipient experience difficult or bad reactions to _____?” Examples of the items included “Assistance with bathing?”, “Darkness or bright lighting?”, and “Being left alone?” Responses included 1 (never or not applicable), 2 (at times), 3 (often), and 4 (always).
To test this scale, the researchers purposively selected a population that was at high risk of adverse reactions to care—Holocaust survivors and their family caregivers. Compared with other older adults, aging Holocaust survivors tend to face greater challenges in reacting to health care professionals and long-term care settings (David & Pelly, 2003). Testing with this population was thought to provide the necessary variability for scale development. Potential participants were contacted in collaboration with Jewish Family Services in one midwestern state. Interested individuals then contacted the researchers directly and were sent printed surveys to complete and return via mail. Recruitment was incentivized ($25 gift card or donation).
Exploratory factor analysis (EFA) was performed to examine the relationships between scale items and the number of factors present within the scale. Acceptable internal consistency between the items was based on a Cronbach’s alpha coefficient of 0.70 or greater. Principal components extraction with varimax rotation was conducted to determine the number of factors present. Orthogonal rotation with Kaiser normalization was used in this analysis due to the expected consecutive nature of the factors. A maximum of 25 iterations were allowed for scale convergence. Eigenvalues greater than 1.0 were used to define each factor. Items were retained in the scale if the structure coefficient was 0.50 or greater (DeVellis, 2012).
A total of 89 family caregivers completed surveys. Caregivers were predominantly women (68.5%), adult children (61.8%), or spouses (25.8%), and, on average, in their early 60s (mean age = 62.1; SD = 13.0 years; range = 33 to 90). Care recipients were predominantly women (59.6%) and, on average, in their mid 80s (mean age = 84.9; SD = 6.6 years; range = 68 to 102). Care recipients lived primarily with spouses (29.2%), alone (28.1%), or in assisted living facilities or nursing homes (25.7%). All caregivers and care recipients were White, non-Hispanic.
EFA on the nine items originally proposed in the ARC scale indicated that one factor, “Difficult or bad reactions in interacting with the opposite gender,” had a low structure coefficient of 0.28; therefore, the factor was deleted (DeVellis, 2012). As presented in Table 1, the eight items retained in the ARC scale were grouped under two distinct factors, explaining 64.6% of the total variance. Factor 1 pertained to “Adverse Reactions to Care Activities.” Four items loaded onto Factor 1, with loading coefficients ranging from 0.69 to 0.88. Factor 2 pertained to “Adverse Reactions to Care Environments.” Four items loaded onto Factor 2, with loading coefficients ranging from 0.60 to 0.87. As reported in Table 2, all of the eight items were positively related to higher reliability. The Cronbach’s alpha coefficients for the four items in Factor 1 and the four items in Factor 2 were 0.83 and 0.78, respectively. The overall reliability for the 8-item ARC scale was found to be high (alpha = 0.84) and far exceeded the standard cutoff of 0.70 (DeVellis, 2012). Mean responses to the items ranged from 1.51 (SD = 0.85; “adverse reactions to assistance with toileting”) to 2.09 (SD = 1.06; “adverse reactions to being left alone”), indicating that most respondents reported that care recipients experienced adverse reactions to care “at times” (for the full ARC scale, see the Figure).
Structure of the Adverse Reactions to Care Scale (N = 89)
Cronbach’s Alpha Coefficient Reliability Analyses of the Arc Scale (N = 89)
Adverse Reactions to Care (ARC) Scale.
The ARC scale appears to have potential value for clinicians in long-term care settings and researchers examining transitions in care. The ARC scale may be especially useful in identifying and caring for older adults who have dementia, those who may have experienced past trauma (e.g., physical or emotional abuse), and those who have had negative past experiences with health care providers. As previously discussed, adverse reactions to care and the triggers associated with these reactions are not being adequately assessed in long-term care settings upon admission. The ARC scale represents the first attempt to develop a tool to measure adverse reactions to care that is brief, easily administered, and psychometrically sound.
The ARC scale may play an important role in furthering person- and family-centered care planning. Person-centered care focuses on the whole person, including the role that past experiences play in their lives, care that is directed at quality of life as defined by the person, and support for personhood and identity. Family-centered care extends this notion by including the family system in assessing and providing support for older adults (Institute for Patient- and Family-Centered Care, 2006). The ARC scale enlists the assistance of family caregivers and helps establish important partnerships between institutions and caregivers—a critical nexus during care transitions (Levine, Halper, Peist, & Gould, 2010). By using the ARC scale, practitioners in long-term care settings may be able to tailor care planning to meet the unique needs of individuals and their families by avoiding potential triggers of adverse reactions to care. This can include altering the physical environment (e.g., lighting), improving care approaches (e.g., shower/bath preference), and changing the social environment (e.g., avoiding crowded rooms; David & Pelley, 2003). Including family in care activities may also provide continuity of care and a sense of belonging for the older adult (Maas et al., 2004).
Although the ARC scale was primarily designed for clinical applications, researchers may also find applications for the ARC scale. The scholarly literature on reactions to care and problematic behaviors is largely based on past studies on dementia caregiving. Behavior issues have consistently been found to be a contributor to burden in family caregivers and the eventual institutionalization of care recipients (Gaugler et al., 2010). Aggressive behavior has also been found to be problematic in institutional settings, due in some part to cognitive deficits, unfamiliarity with care providers, and projected anger (Zeller et al., 2009). Although researchers have been able to identify the behaviors that cause distress in family and professional caregivers, far less is known about the triggers to such behavior. The ARC scale may be able to better account for the reasons behind such behaviors and facilitate the development and testing of conceptual models of adverse reactions to care.
It is important to note several limitations in this study. First, the sample was purposively selected and was not reflective of the overall population of older adults and their caregivers. Holocaust survivors and their family caregivers have been affected by significant trauma, which makes them unique among caregiver–care recipient dyads. Although it was deemed appropriate to use this population, it is necessary to further test and validate this scale with other populations. The sample in the current study was also relatively small. Although meeting general rules of thumb regarding the ratio of participants per item tested (e.g., 10 to 1), this was only marginally met and questions remain regarding stability and reliability. Future testing and validation should involve larger samples. Finally, the sample was not diverse in terms of race/ethnicity. This limits the applicability of the measure, and future testing should include samples with greater diversity.
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Structure of the Adverse Reactions to Care Scale (N = 89)
|Factor 1: Adverse reactions to care activities||1||2|
| Taking medications||0.69a||0.42|
| Care from health care professionals||0.76a||0.29|
|Factor 2: Adverse reactions to care environments|
| Being alone||0.20||0.73a|
| Being around strangers||0.34||0.60a|
| Loud noises||0.20||0.77a|
| Darkness and/or bright lighting||0.09||0.87a|
|Cronbach’s alpha coefficient||0.83||0.78|
Cronbach’s Alpha Coefficient Reliability Analyses of the Arc Scale (N = 89)
|Factor/Item||Scale Mean if Item Deleted||Scale Variance if Item Deleted||Corrected Item-Total Correlation||Cronbach’s Alpha Coefficient if Item Deleted|
|Factor 1: Adverse reactions to care activities (alpha = 0.83)|
| Taking medications||12.35||21.58||0.53||0.81|
| Care from health care professionals||12.39||22.80||0.63||0.82|
|Factor 2: Adverse reactions to care environments (alpha = 0.78)|
| Being alone||12.19||22.52||0.55||0.83|
| Being around strangers||12.54||23.60||0.55||0.83|
| Loud noises||12.48||22.18||0.58||0.83|
| Darkness and/or bright lighting||12.62||22.65||0.58||0.83|