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The association between family caregivers’ involvement in managing older adults’ medications and caregivers’ information-seeking behavior
SCIENCE AND PRACTICE Journal of the American Pharmacists Association 57 (2017) 170e177
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RESEARCH
The association between family caregivers’ involvement in managing older adults’ medications and caregivers’ information-seeking behavior Marwa Noureldin*, Matthew M. Murawski, Holly L. Mason, Gerald C. Hyner, Kimberly S. Plake a r t i c l e i n f o
a b s t r a c t
Article history: Received 6 June 2016 Accepted 4 December 2016
Objectives: 1) To explore the association between family caregivers’ involvement in managing care recipients’ medications and their information-seeking behavior related to caregiving; and 2) to examine the sources used by caregivers when seeking information. Methods: A retrospective analysis of cross-sectional data from 2 national studies, the 2011 National Health and Aging Trends Study (NHATS) and its supplement, the National Study of Caregiving (NSOC), was conducted. A nationally representative sample of community-dwelling adults (65 years of age) completed NHATS interviews, and a sample of their family caregivers participated in NSOC. Caregiver involvement in medication management was assessed with the use of 2 items asking caregivers if they helped keep track of care recipients’ medications or helped with injecting medications. Information seeking was assessed with the use of an item asking caregivers if they ever looked for caregiving-related information. Results: Out of 1367 caregivers interviewed, 54% reported helping to keep track of care recipients’ medications and 8.7% assisting with injecting medications. Approximately 10.2% (n ¼ 149) of caregivers reported seeking information to help them care for their care recipients. Caregivers sought information primarily on their own either through online resources or asking friends or relatives (73.3%). Sixty-four percent also sought information from medical providers or social workers. Adult children of caregivers were more likely to seek information for their older adult parents, based on bivariate analysis (P <0.01). In multivariable-adjusted models, caregivers who helped to keep track of medications had 2.30 (95% confidence interval [CI] 1.18 to 4.51) times higher odds of seeking information to help them to provide care for their care recipients. Caregivers helping with injecting medications were less likely to seek information (odds ratio 0.32, 95% CI 0.14 to 0.76). Conclusion: Specific caregiver responsibilities, such as assisting with medication management activities, are associated with caregivers’ information-seeking behavior related to care recipients’ health. Health care providers, including pharmacists, can play an important role in helping caregivers to identify proper resources for information and in educating them about medication management. © 2017 American Pharmacists Association®. Published by Elsevier Inc. All rights reserved.
Disclosure: The authors declare no conflicts of interest. Previous presentation: International Society for Pharmacoeconomics and Outcomes Research 20th Annual International Meeting, Philadelphia, PA, May 2015. * Correspondence: Marwa Noureldin, Purdue University School of Nursing, Johnson Hall, 502 N. University St., West Lafayette, IN 47907. E-mail address: [email protected] (M. Noureldin).
An estimated 14.3% of U.S. adults, or about 34.2 million individuals, serve as family or informal caregivers for adults 50 years of age or older.1 Family caregivers remain the main source of long-term care support for older adults,2,3 and the economic value of informal caregiving has been estimated to be $450 billion.3 With the aging of the U.S. population and the burden of chronic disease on older adults,4 family caregivers are increasingly responsible for older adults’ care coordination and play key roles in the management of care recipients’ health and well-being, including medication management.5-7
http://dx.doi.org/10.1016/j.japh.2016.12.061 1544-3191/© 2017 American Pharmacists Association®. Published by Elsevier Inc. All rights reserved.
SCIENCE AND PRACTICE Caregiver medication management and information seeking
Key Points Background: Family caregivers play key roles in the management of care recipients’ health and well-being, including medication management. Caregivers report a wide range of information and support needs for their responsibilities, but few studies have examined caregivers’ informationseeking behavior and its relationship to caregiving responsibilities, such as medication management. A better understanding of the relationship between family caregivers’ involvement in medication management and their information-seeking behavior can inform pharmacy practice and research on the importance of integrating caregivers in the patient care process. Findings: More than one-half of caregivers (54.2%) helped older adults to keep track of their medication regimens, and 8.7% helped with injecting medications. In addition, 10.2% reported seeking information to help them in providing care to their care recipients. Caregivers who helped care recipients with keeping track of their medications were significantly more likely to seek information. This suggests that managing medication regimens might be one of several triggers that prompts caregivers to look for information related to their caregiving responsibilities. Health care providers, including pharmacists, can play a more proactive role in engaging and educating caregivers during counseling sessions and inquiring about caregivers’ potential information needs.
stated that they want more training with medication management.10 Several studies have examined caregivers’ information and support needs,10,18,19 but there has been less emphasis on caregivers’ information-seeking behavior when providing care for a family member or friend. Studies examining information seeking are mainly focused on caregivers’ use of technology or online sources to find information or assist with care recipients’ care.20-22 However, it is unclear how specific caregiving responsibilities, such as caregivers’ involvement in managing older adults’ medications, are related to information seeking. Based on the health communication literature, information seeking is defined as a behavior to fulfill a perceived need for information and characterized based on individuals’ triggers to seek information, the sources used, and the type of information sought.23 Informational and skillbased needs may serve as triggers for caregivers to seek information or training to help them in providing care.23 For example, concerns related to medication administration, including lack of education regarding medication-specific issues,14,16 may create situations that prompt caregivers to seek information to fulfill their informational needs. Examination of the relationship between caregivers’ involvement in medication management and their information-seeking behavior may enhance the understanding of caregivers’ experiences with managing care recipients’ health and can be useful in informing pharmacy practice and research. Objectives The purpose of the present study was to explore the association between family caregivers’ involvement in the management of older adults’ medications and their experience in seeking caregiving-related information. An additional objective was to examine the sources of information that caregivers used when they looked for information. Methods
In the caregiving literature, medication management has been formerly categorized as a high-level instrumental activity of daily living (IADL)8 or as a medically related task.9,10 Medication management encompasses more than medication adherence,11 and caregivers’ involvement in medication management may include multiple activities, such as ordering and picking up medications, keeping track of medications to ensure that the correct medication is taken at the right time, and administering medications.10,12-14 Reinhard et al. reported that among caregivers who manage medications, 61% considered it to be a hard task.10 Medication management by caregivers may have a significant impact on care recipients’ disease management and health outcomes, and this multifaceted responsibility can also lead to increased caregiver burden or stress.13,15 Access to reliable and credible information is an important factor that can influence caregivers’ ability to manage chronic conditions and medications. Yet caregivers report receiving little support or training to assist with responsibilities, including medication management.5,16 Only 16% of family caregivers for adults (50 years of age) have obtained any formal caregiver training,17 15% reported receiving training from a pharmacist, and 24% of caregivers
Study population Caregiver and care recipient data from Round One of the National Health and Aging Trends Study (NHATS) and its supplement, the National Study of Caregiving (NSOC), were utilized for this retrospective cross-sectional study. NHATS and NSOC are sponsored by the US National Institute on Aging (grant no. U01AG032947) and were conducted by Johns Hopkins University Bloomberg School of Public Health in 2011.24 NHATS was designed to follow a nationally representative cohort of Medicare beneficiaries (65 years of age) on an annual basis, and the Medicare enrollment database served as the sampling frame for NHATS.24 Participants had to be: a) 65 years of age or older as of September 30, 2010, b) with no date of death, and c) residing in 1 of the 655 sampled zip clusters previously determined by NHATS investigators. NHATS Round One participants were selected with the use of a stratified 3-stage sampling design. A total of 8245 Medicare beneficiaries were enrolled in Round One.25 NSOC is composed of a nationally representative sample of 2007 family caregivers (out of 4935 eligible caregivers) of NHATS Round One study participants. NHATS participants
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who indicated that they received assistance with self-care, mobility, or household activities from “helpers” and were willing to provide contact information of their helpers provided the sample of family caregivers for the NSOC.26 Eligible caregivers were individuals who: a) had helped the NHATS participant (i.e., care recipient) with a self-care, mobility, or household activity and 2) were related to the participant or were an unrelated unpaid helper. Caregivers were interviewed for 30 minutes and asked questions addressing their care activities, duration of care, aspects of caregiving, their support environment, their health, and demographics.26 Based on the NSOC design, all eligible caregivers for NHATS participants were interviewed, thus yielding multiple caregivers for some care recipients. For the purposes of analysis, only 1 caregiver per NHATS participant was included in this study. To identify a primary caregiver for each NHATS participant (i.e., care recipient), the authors created a care index similar to one created by the National Alliance for Caregiving and used it to distinguish 1 primary caregiver when multiple caregivers were interviewed in the NSOC.17 Information on how primary caregivers were identified can be found in Appendix 1 (available on JAPhA.org as supplemental content). A total of 638 caregivers were removed from the sample as nonprimary caregivers. Therefore, the final sample for the present analysis consisted of 1369 primary caregivers and their respective care recipients.
Measures Demographic and caregiving variables Demographic and health variables for NHATS participants (i.e., care recipients) were obtained from the NHATS Round One data files and included age, gender, race/ethnicity, education level, and number and type of health conditions. Age was provided as both a continuous variable and a categoric variable. The categoric variable was collapsed from 6 into 4 categories (65-69 years, 70-79 years, 80-89 years, and 90 years). Similar to other NHATS-related studies, race/ethnicity was divided into 4 categories (white non-Hispanic, black non-Hispanic, Hispanic, and other). Education was collapsed from 9 categories (1 ¼ no schooling; to 9 ¼ master, professional, or doctoral degree) to 4 categories (1 ¼ no degree; to 4 ¼ bachelor, professional, master, or doctoral degree). Care recipients’ health conditions were determined based on variables asking if NHATS participants were diagnosed with the following conditions: heart attack, heart disease (including angina, congestive heart failure), high blood pressure, arthritis (osteoarthritis or rheumatoid), osteoporosis, diabetes, lung disease (such as emphysema, asthma, or chronic bronchitis), a stroke, dementia or Alzheimer disease, or cancer (yes/no). Caregivers’ demographics were obtained from the NSOC data files and included age, gender, education, and relationship to the care recipient. Caregiving variables included living arrangement, duration of caregiving, and involvement in activities of daily living (ADLs), IADLs, and medical tasks. Age was calculated based on the birth date provided in the NSOC data files and examined as both a continuous and a categoric variable (18-49 years, 50-59 years, 60-69 years, and 70 years). Caregivers’ education was collapsed from 9 to 4 categories (1 ¼ no degree; to 4 ¼ bachelor, professional, master, or doctoral degree). Race was not asked of caregivers. 172
Relationship was collapsed from 30 categories to 3 (1 ¼ spouse, 2 ¼ child; 3 ¼ other). Caregivers were asked if they were living with their care recipient (yes/no; living arrangement) and how long they had been providing care for the care recipient (duration of caregiving). Involvement in ADLs was calculated based on the summed score of 2 items asking how often caregivers helped care recipients with a) personal care activities and b) getting around. Each item’s response ranged from 1 ¼ never to 5 ¼ every day so the total summed score ranged from 2 to 10. Likewise, involvement in IADLs was calculated based on the summed score of 2 items asking how often caregivers helped with a) household chores and b) shopping, with a possible summed score range of 2 to 10. Caregiver involvement in medical tasks was measured based on an item asking the caregiver if they had helped the care recipient in the last month with managing medical tasks (i.e., ostomy care, IVs, testing blood; yes/no). Medication management variables Caregivers’ assistance with medication management was operationalized based on previous literature27 and measured with the use of 2 items in the NSOC dataset: a) if the caregiver ever helped care recipients keep track of medications in the last month, or b) if they helped care recipients take shots or injections (yes/no). Keeping track of medications was defined by NHATS investigators as “making sure the correct medication is taken at the correct time.”12 Information-seeking behavior variable Caregivers’ information-seeking behavior was measured with the use of an item that asked caregivers if they had ever looked for information, training, or services to help in their care for the care recipient (yes/no). Caregivers who looked for information were also asked the source of the information, that is, a government or community agency, a medical care provider or social worker, a church or synagogue, an employer, or on their own (e.g., looking online, asking a friend, or other). Data analysis NHATS Round One data files are publicly available for download and analysis; however, NSOC data files are considered to be sensitive and require additional permission for access. NHATS and NSOC data files may be linked. Permission for the use of the NSOC data was obtained via a sensitive data use agreement. The present study was deemed to be exempt by the Institutional Review Board of Purdue University. Data were analyzed with the use of SPSS v. 23 software (SPSS, Inc., Armonk, NY). Weighted analysis was conducted to provide valid statistical estimates of the population and adjust for the complex sample design, including oversampling.28 NHATS investigators recommend use of sample weights with both descriptive statistics and regression analysis (J. Kasper, personal communication, February 5, 2015). Taylor series linearization was used to compute valid standard errors for estimates.26 An alpha of 0.05 was used to determine statistical significance. Descriptive statistics, including weighted percentages, means, and standard errors, were used to summarize relevant variables. Bivariate analyses between the 2 independent variables (keeping track and injecting medications) and the
SCIENCE AND PRACTICE Caregiver medication management and information seeking
provided assistance with medical tasks, such as IVs, blood testing, and ostomy care. Based on weighted analysis of data from NHATS Round One, the majority of care recipients in the US were female (65.6%), white (77.3%), and 70 years of age or greater (83.2%; Table 2). They reported an average 3.4 ± 0.06 health conditions (range 0-9), most commonly high blood pressure (72.0%), osteoarthritis or rheumatoid arthritis (68.4%), and diabetes (35.1%). Among 1367 primary caregivers, 54.5% indicated they had helped the care recipient keep track of medications in the last month and 8.7% indicated providing assistance with injections; 10.2% of caregivers reported ever looking for information to help them care for their care recipients. Based on bivariate analyses, caregivers who looked for information were significantly more likely to be younger, children of the care recipient, assisting with ADLs, or managing medical tasks for the care recipient compared with caregivers who did not look for information (P <0.05; Table 1). In addition, caregivers who reported keeping track of care recipients’ medications, or caring for a care recipient with dementia, or caring for a care recipient with no educational degree were also more likely to look for information to help them with caregiving (P <0.05). Caregivers who reported looking for information (n ¼ 149) indicated several information sources from which they sought help in caring for the care recipient, as presented in Table 3. The majority of caregivers (73.3%) looked for information on their own or using the Internet or friends, 63.7% reported looking for information from a medical provider or a social worker, and 59.6% reported looking for information from governmental or community agencies (e.g., area agency on aging, senior centers, aging and disability resource centers).
dependent variable (information seeking) were performed, as well as between the sociodemographic, caregiving, and care recipient health variables and the dependent variables with the use of the adjusted Wald chi-square statistic. A multivariate logistic regression model was developed to examine the association between caregivers’ assistance with keeping track of medications and their information-seeking behavior, while controlling for caregivers’ age, gender, and education as well as care recipients’ age, gender, race, and education. Additional control variables included caregiving items, such as duration of caregiving (1 year or >1 year); living arrangement; involvement in ADLs, IADLs, and medical tasks; and care recipient health conditions. A similar model was developed examining the association between caregivers’ involvement in injecting medications and their information-seeking behavior with the same control variables. Both caregiver and care recipient factors are likely to play a role in caregivers’ information-seeking behavior, based on information-seeking literature.23
Results Based on weighted analysis of nationally representative data from the NSOC, the majority of primary caregivers in the United States were female (60.2%), with an overall mean age of 59.8 ± 0.62 years (Table 1). Forty-seven percent were children of the care recipient, and 54.2% were living with the care recipient. Caregivers had been providing care for an average 7.9 ± 0.38 years. Nineteen percent provided assistance with ADLs on most days or every day, and 47.1% provided assistance with IADLs on most days or every day. Twelve percent Table 1 Caregiver sociodemographic, caregiving characteristics, and information seeking Caregiver characteristic Mean age (y) Age category (y) 18-49 50-59 60-69 70 Female Education No degree High school degree Some college, technical, associate degree Bachelor, professional, PhD degree Relationship to the care recipient Spouse Child Other Living with care recipient Number of years caregivinga Activities of daily livingb Instrumental activities of daily livingc Involvement in medical tasks (e.g., ostomy care, IVs, etc.)
Total sample (n ¼ 1369)
Looked for information (n ¼ 149)
Did not look for information (n ¼ 1203)
P value
59.8 (0.62)
55.0 (1.49)
60.2 (0.63)
<0.001
247 326 395 359 919
(22.9%) (23.1%) (28.5%) (25.4%) (60.2%)
38 45 34 26 104
(31.8%) (35.8%) (17.5%) (14.8%) (58.4%)
207 280 360 326 803
(21.9%) (21.8%) (30.1%) (26.1%) (60.6%)
187 371 451 345
(14.0%) (27.3%) (33.5%) (25.2%)
18 40 50 41
(14.0%) (28.1%) (33.8%) (24.0%)
168 328 396 302
(14.0%) (27.1%) (33.5%) (25.4%)
390 681 298 796 7.9 4.9 6.8 177
(29.5%) (47.1%) (23.4%) (54.2%) (0.38) (0.09) (0.09) (11.9%)
30 98 21 96 7.2 5.6 7.0 29
(17.5%) (66.0%) (16.4%) (55.2%) (0.62) (0.30) (0.26) (19.2%)
354 575 274 689 8.0 4.8 6.8 146
(30.6%) (45.0%) (24.4%) (53.9%) (0.42) (0.09) (0.09) (10.9%)
0.738 0.989
0.001
0.827 0.330 0.004 0.326 0.003
All values are presented as n (weighted %) or mean (SE). a Range 0-70 years. b Summed frequency of performing activities based on 2 items (personal care and getting around). Out of a possible 10, range 2-10 (2 ¼ never for both activities; 10 ¼ every day for both activities). c Summed frequency of performing activities based on 2 items (household chores and shopping). Out of a possible 10, range 2-10 (2 ¼ never for both activities; 10 ¼ every day for both activities).
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Table 2 Characteristics of National Health and Aging Trends Study participants (i.e., the care recipients) Care recipient characteristic Mean age (y) Age category (y) 65-69 70-79 80-89 90 Female Race (n ¼ 1366) White non-Hispanic Black non-Hispanic Hispanic Other Education (n ¼ 1361) No degree High school degree Some college, technical, associate degree Bachelor, professional, PhD degree Health conditions (n ¼ 1361) High blood pressure Arthritis Diabetes Osteoporosis Cancer Heart disease Lung disease Stroke Heart attack Dementia No. of conditions (n ¼ 1343)a
Total 79.3 (0.25) 147 378 583 261 925
(16.8%) (32.6%) (38.8%) (11.8%) (65.6%)
849 392 93 32
(77.3%) (11.8%) (8.0%) (2.8%)
518 360 304 179
(31.7%) (28.2%) (25.3%) (14.8%)
1007 944 462 378 373 356 281 316 291 272 3.4
(72.0%) (68.4%) (35.1%) (30.1%) (28.7%) (25.5%) (22.3%) (21.6%) (20.8%) (17.2%) (0.06)
All values are presented as n (weighted %) or mean (SE). n ¼ 1369 unless otherwise indicated. a Out of a possible 10, range 0-9.
The top 3 sources of assistance sought varied by caregivers’ relationships with the care recipients. Children of care recipients were the most likely to seek information regardless of source used; however, spousal caregivers tended to seek information from medical providers or social workers more than other sources. Specifically, they composed 13.8% of caregivers who looked for information on their own, but they composed 21.6% of caregivers who sought information from medical providers or social workers. Supplementary Figure 1 depicting these relationships can be found in Appendix 2 (available on JAPhA.org as supplemental content). Results from multivariate models indicated that caregivers’ assistance in either keeping track of or injecting care recipient medications were associated with looking for information even after adjusting for sociodemographic, caregiving, and care recipient health variables. As presented in Table 4, caregivers who reported keeping track of medications had 2.30 (95% confidence interval [CI] 1.18 to 4.51) times higher odds of Table 3 Sources of information reported by caregivers (n ¼ 149) Source of information On own (internet, library, friend) Medical provider or social worker Government or community agency Religious organization (church or synagogue) Other
n (weighted %) 105 99 90 14 10
(73.3%) (63.7%) (59.6%) (10.7%) (6.4%)
Multiple responses possible, so percentages do not add up to 100.
174
looking for information compared with caregivers who did not assist with keeping track of medications. On the other hand, caregivers who assisted with injecting medications were significantly less likely to look for information (odds ratio [OR] 0.32, 95% CI 0.14 to 0.76) than caregivers who did not help with medication injection. In addition, caregivers who cared for a family member with dementia had more than twofold odds of looking for information in both models.
Discussion This study provides several relevant findings related to how caregivers’ involvement in specific health-related behaviors, such as managing medications, is associated with their overall information-seeking behavior. To our knowledge, few, if any, studies have examined this relationship, especially on a national level, yet the findings have important practice and research implications. Based on the results, caregiver involvement in medication management responsibilities, including both ensuring that the correct medication is given at the appropriate time and administration of injectable medication, are significantly associated with information-seeking behavior, even after adjusting for sociodemographic characteristics, caregiving factors, and care recipient’s health. Caregivers who helped older adults to keep track of medications had more than twofold higher odds of looking for information to help them to care for their care recipients. Assisting older adults with their medications and ensuring that they are taking medication appropriately may be regarded as a potential external trigger that prompts family caregivers to seek out information to help them in providing care to their relatives, which is in line with previous literature on informationseeking behavior.23 On the other hand, caregivers who were helping to inject medications had significantly lower odds of looking for information. It is not clear why there is an inverse relationship between these 2 caregiving behaviors. One potential explanation might be related to issues in the dataset, because the percentage of caregivers who both helped with injecting medications and looked for information were a small subset of the caregiver sample, and that may have affected the results. Additional research is needed to further examine this relationship before this association can be generalized to other caregivers. Results also suggest that a substantial proportion of family caregivers (54.2%) are assisting care recipients in keeping track of their medications and making sure that they take the correct medications at the appropriate time, and 8.7% are helping with injecting medications. A national report indicated that 42% of caregivers have helped with giving medications to care recipients 50 years of age.17 As accessible members of the health care team, community pharmacists can play an important role in assisting caregivers as they manage older adults’ medications.29 Current research and practice tend to combine patients and caregivers as 1 audience30,31 without distinction between the differing needs of these 2 groups; however, caregiving studies indicate that the information needs of caregivers may be different from those of patients.13,18,19 Family caregiving has been described as a public health issue,3 and pharmacists can engage proactively with caregivers to provide appropriate education and help caregivers to develop the necessary skills to properly fulfill their
SCIENCE AND PRACTICE Caregiver medication management and information seeking
Table 4 Adjusted association of caregivers’ medication management assistance (either tracking medications or injecting medications) with odds of caregiver information seeking, adjusted OR (95% CI) Variable
Medication management assistance Caregiver age (y) Female caregiver Caregiver education No degree High school Some college, technical, etc. Bachelor, professional, PhD Caregiver relationship to care recipient Spouse/partner Child Other Care recipient age (y) Female care recipient White-non-Hispanic care recipient Care recipient education No degree High school degree Some college, technical, associate degree Bachelor, professional, PhD degree Care recipient health conditions High blood pressure Arthritis Diabetes Osteoporosis Cancer Heart disease Lung disease Stroke Heart attack Dementia Caregiver living with care recipient Caregiving >1 y Activities of daily living involvement Instrumental activities of daily living involvement Involvement in medical tasks (e.g., ostomy care, IVs, etc.)
Adjusted OR (95% CI) for information seeking Keeping track of medicationsa
Injecting medicationsb
2.30 (1.18-4.51)* 0.97 (0.95-1.00)* 0.88 (0.53-1.48)
0.32 (0.14-0.76)* 0.98 (0.96-1.00)* 0.90 (0.54-1.51)
1.00 0.96 (0.43-2.16) 0.78 (0.34-1.78) 1.02 (0.38-2.73)
1.00 1.01 (0.44-2.31) 0.77 (0.33-1.78) 0.94 (0.35-2.48)
1.00 1.41 0.70 1.00 0.87 1.51
1.00 1.63 0.79 1.00 0.88 1.45
(0.57-3.48) (0.23-2.10) (0.96-1.03) (0.51-1.49) (0.87-2.65)
(0.67-3.97) (0.26-2.43) (0.96-1.03) (0.51-1.51) (0.85-2.47)
1.00 0.51 (0.27-0.95)* 0.44 (0.23-0.86)* 0.69 (0.29-1.63)
1.00 0.51 (0.27-0.99) 0.50 (0.24-1.07) 0.70 (0.29-1.70)
1.78 0.71 0.68 1.34 1.46 0.72 1.74 1.12 0.70 2.34 0.95 1.07 1.08 0.95 1.18
1.76 0.74 0.81 1.27 1.47 0.78 1.77 1.01 0.67 2.45 0.88 1.17 1.10 1.03 1.76
(0.91-3.46) (0.40-1.26) (0.35-1.30) (0.89-2.02) (0.87-2.47) (0.35-1.48) (0.99-3.07) (0.60-2.08) (0.32-1.55) (1.37-4.00)** (0.53-1.69) (0.38-3.05) (0.99-1.17) (0.82-1.10) (0.52-2.68)
(0.92-3.38) (0.41-1.32) (0.41-1.61) (0.79-2.04) (0.86-2.51) (0.38-1.61) (0.95-3.30) (0.54-1.89) (0.32-1.39) (1.45-4.16)** (0.49-1.59) (0.41-3.31) (1.02-1.20)* (0.90-1.18) (0.79-3.88)
Abbreviations used: OR, odds ratio; CI, confidence interval. *P <0.05; **P <0.01. a Adjusted Wald c2 ¼ 36.23; P <0.01. b Adjusted Wald c2 ¼ 37.65; P <0.00.
various caregiving responsibilities. For example, for patients who have a family caregiver involved in managing medications on a regular basis, pharmacists can engage the caregiver during pharmacy counseling encounters or during medication therapy management sessions and identify or address both the patients’ and caregivers’ information needs to ensure appropriate medication use. Caregivers providing care to dementia patients may be an important subgroup of caregivers whom pharmacists can target for counseling during pharmacy encounters.32,33 It is well documented that caregivers of adults with dementia have a more intense caregiving load, provide greater assistance to their care recipients,27,34 and lack the necessary information and training to provide adequate care.5 The present study’s results reveal that this group is also more likely to look for information to assist with caregiving. Pharmacists may serve as key resources in assisting these caregivers with their responsibilities. Overall, this study found that 10.2% of caregivers reported ever looking for information, despite national reports of
significant information and support gaps among caregivers.1,5,19 A recent national report indicated that 43% of caregivers are performing medical tasks without any previous preparation,1 and another study reported that 61% of caregivers learned how to manage medications on their own.10 Caregivers may be unaware of available resources or programs, or they may lack time to look for information. More research is warranted to investigate this issue and examine other aspects of the information-seeking process. Among caregivers who did look for information, sources sought by caregivers consisted primarily of utilization of online resources or asking relatives or friends (73.3%) and seeking information from a medical provider or social worker (63.7%). Children of the care recipients were more likely to look for caregiving-related information overall and tended to look for that information on their own. Previous studies have pointed to the Internet as a common resource for caregivers, especially children caregivers, when looking for a wide range of caregiving-related information and support.20-22 Online 175
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resources are seen as a fairly accessible resource for many individuals, although several potential issues may arise when searching for information online, including the quality and reliability of the information, and how effective it is in meeting caregivers’ educational needs. This is another area where pharmacists can play an essential role in helping caregivers identify proper health-related and medication-related educational and training resources.
Limitations This study has several limitations. Because it was a retrospective study analyzing a secondary dataset, analysis was dependent on the preexisting items in the NHATS and NSOC datasets and how the variables were measured. For example, although NHATS and NSOC distinguish between different medication-related tasks, such as keeping track of and injecting medications, there is no information on the number or type of medications. In addition, measuring information seeking was limited to a broad item in the NSOC dataset that asked caregivers if they ever looked for any information to help them to assist with caring for their relatives, not solely medication-related information. However, given the small percentage of caregivers who looked for information, it is likely that even fewer caregivers have received specific information or education to help them manage care recipients’ medications. Based on the health communication literature, health information-seeking behavior is influenced by sociodemographic and personal factors, including individuals’ health beliefs and self-efficacy, as well as individuals’ age, gender, race/ethnicity, education, and health literacy. Some of these factors, such as caregivers’ self-efficacy and health literacy, as well as their baseline knowledge relating to various caregiving responsibilities, were not available in the datasets. Items that asked about sources of information were doublebarreled, for example, medical providers and social workers were combined into 1 category, and it was not clear if medical providers were only physicians or included other professionals, making it challenging to more comprehensively evaluate sources of information used by caregivers. Because all responses were self-reported, either from the caregiver or the older adult care recipient, responses may have been subject to recall bias. In addition, owing to the cross-sectional nature of the survey data, only associations between the variables can be highlighted and no causality can be demonstrated. This should be taken into consideration when determining relationships between the variables examined in this study. Despite the limitations, this study has several strengths, including the analysis of a nationally representative sample of older adult care recipients and their family caregivers. The distribution of NHATS respondents is representative of older adults in the US, based on the national profile of older adults in terms of age, gender, race, education, and number of health conditions.35 In addition, caregiver characteristics in this study sample are in line with caregiver characteristics in previous national reports regarding age, gender, education, and relationship to care recipient.1,10 Using nationally representative data helps to improve generalizability of the results. Using the NHATS and NSOC datasets was unique, because the NSOC specifically examined caregivers of Medicare beneficiaries and linked caregivers to their care recipients. 176
Conclusion Based on nationally representative data, this study’s results indicate that more than one-half of family caregivers of older adults are assisting with management of care recipient medications, and involvement in this responsibility is associated with caregivers’ information-seeking behavior. Practice and research implications stem from this study’s findings, including addressing the educational needs of caregivers as they continue to take on more complex tasks, such as medication management. Results of this study highlight the need for health care providers, including pharmacists, to play a more proactive role in assessing caregivers’ information needs and providing individualized education related to medication management. Future studies should examine the types of education or training caregivers currently receive to assist them with specific caregiving tasks, such as medication management, and whether it has been effective in improving caregivers’ management of care recipients’ health. Barriers preventing caregivers from seeking information also should be explored as well as the role of pharmacists in educating caregivers about medication management. Collectively this information would inform the development of tailored and accessible interventions aimed at actively engaging and educating family caregivers to optimize caregiving and improve care recipients’ health outcomes. References 1. National Alliance for Caregiving and American Association of Retired Persons. Caregiving in the United States, 2015-a focused look at caregivers of adults age 50þ. Available at: http://www.caregiving.org/ caregiving2015/. Accessed May 5, 2016. 2. Chari AV, Engberg J, Ray KN, Mehrotra A. The opportunity costs of informal elder-care in the United States: new estimates from the American time use survey. Health Serv Res. 2015;50(3):871e882. 3. Feinberg LF, Reinhard SC, Houser A, Choula R. Valuing the invaluable: 2011 update. The growing contributions and costs of family caregiving. American Association of Retired Persons Public Policy Institute. Available at: http://www.aarp.org/relationships/caregiving/info-07-2011/valuingfs.html. Accessed May 5, 2016. 4. Centers for Disease Control and Prevention. The state of aging and health in America 2013. Atlanta, GA: US Department of Health and Human Services. Available at: http://www.cdc.gov/aging/help/dph-aging/stateaging-health.html. Accessed May 5, 2016. 5. Gillespie R, Mullan J, Harrison L. Managing medications: the role of informal caregivers of older adults and people living with dementia. A review of the literature. J Clin Nurs. 2014;23(23-24):3296e3308. 6. Levine C, Halper D, Peist A, Gould DA. Bridging troubled waters: family caregivers, transitions, and long-term care. Health Aff (Millwood). 2010;29(1):116e124. 7. Zarit SH, Reamy AM. Future directions in family and professional caregiving for the elderly. Gerontology. 2013;59:152e158. 8. Elliot RA, Marriott JL. Standardised assessment of patients’ capacity to manage medications: a systematic review of published instruments. BMC Geriatr. 2009;9:27. 9. Donelan K, Hill CA, Hoffman C, et al. Challenges to care: informal caregivers in a changing health system. Health Aff (Millwood). 2002;21(4): 222e231. 10. Reinhard SC, Levine C, Samis S. Home alone: family caregivers providing complex chronic care; 2012. American Association of Retired Persons and United Hospital Fund. Available at: http://www.aarp.org/home-family/caregiving/ info-10-2012/home-alone-family-caregivers-providing-complex-chroniccare.html. Accessed May 5, 2016. 11. Banning M. Older people and adherence with medication: a review of the literature. Int J Nurs Stud. 2008;45(10):1550e1561. 12. Wolff JL, Spillman BC. Older adults receiving assistance with their physician visits and prescribed medications and their family caregivers: prevelance, characteristics, and hours of care. J Gerontol B Psychol Sci Soc Sci. 2014;69(7):S65eS72.
SCIENCE AND PRACTICE Caregiver medication management and information seeking
13. Smith F, Francis SA, Gray N, et al. A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services. Health Soc Care Commun. 2003;11(2):138e145. 14. Travis SS, Bethea LS, Winn P. Medication administration hassles reported by family caregivers of dependent elderly persons. J Gerontol A Biol Sci Med Sci. 2000;55(7):M412eM417. 15. Travis SS, Kao HFS, Acton GJ. Helping family members manage medication administration hassles. J Psychosoc Nurs Ment Health Serv. 2005;43(11):13e15. 16. Travis SS, McAuley WJ, Dmochowski J, et al. Factors associated with medication hassles experienced by family caregivers of older adults. Patient Educ Couns. 2007;66:51e57. 17. National Alliance for Caregiving and American Association of Retired Persons. Caregiving in the United States, 2009. Available at: http://www. caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf. Accessed May 5, 2016. 18. Wackerbarth SB, Johnson MMS. Essential information and support needs of family caregivers. Patient Educ Couns. 2002;47(2):95e100. 19. Washington KT, Meadows SE, Elliott SG, Koopman RJ. Information needs of informal caregivers of older adults with chronic health conditions. Patient Educ Couns. 2011;83:37e44. 20. Fox S, Brenner J. Family caregivers online. Washington, DC: Pew Research Center; 2012. Available at: http://pewinternet.org/Reports/2012/ Caregivers-online.aspx. Accessed May 5, 2016. 21. Kernisan LP, Sudore RL, Knight SJ. Information-seeking at a caregiving website: a qualitative analysis. J Med Internet Res. 2010;12(3):e31. 22. National Alliance for Caregiving and United Healthcare. E-Connected family caregiver: bringing caregiving into the 21st century; 2011. Available at: http://www.caregiving.org/data/FINAL_eConnected_Family_Caregiver_ Study_Jan%202011.pdf. Accessed May 5, 2016. 23. Galarce EM, Ramanadhan S, Viswanath K. Health information seeking. In: Thompson T, Parrot R, Nussbaum J, eds. The Routledge Handbook of Health Communication. 2nd ed. New York, NY: Routledge; 2011:167e180. 24. National Health and Aging Trends Study. Produced and distributed by www.nhats.org with funding from the National Institute on Aging (grant no. NIA U01AG329470). 25. Montaquila J, Freedman VA, Edwards B, Kasper JD. National health and aging trends study round 1 sample design and selection. NHATS Technical Paper #1. Baltimore, MD: Johns Hopkins University School of Public Health; 2012. Available at: www.NHATS.org. Accessed May 5, 2016. 26. Kasper JD, Freedman VA, Spillman BC. National study of caregiving user guide. Baltimore, MD: John Hopkins University School of Public Health; 2013. Available at: www.nhats.org. Accessed May 5, 2016.
27. Wolff JL, Spillman BC, Freedman VA, Kasper JD. A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med. 2016;176(3):372e379. 28. Siller AB, Tompkins L. The big four: analyzing complex sample suvey data using SAS, SPSS, STATA, and SUDAAN. Poster presented in SUGI 31 Proceedings, San Francisco, CA, March 2006. Available at: http://www2.sas.com/proceedings/sugi31/172-31.pdf. Accessed May 5, 2016. 29. McMillan SS, Sav A, Kelly F, et al. Is the pharmacy procession innovative enough?: meeting the needs of Australian residents with chronic conditions and their carers using nominal group technique. BMC Health Serv Res. 2014;14:476. 30. Cappuzzo KA. Communicating with seniors and their caregivers. Consult Pharm. 2008;23(9):695e709. 31. Krueger JL, Hermansen-Kobulnicky CJ. Patient perspective of medication information desired and barriers to asking pharmacists questions. J Am Phar Assoc (2003). 2001;51(4):510e519. 32. Chang F, Patel J, Schulz ME. The “rising tide” of dementia in Canada: what does it mean for pharmacists and the people they care for? Can Pharm J (Ott). 2015;148(4):193e199. 33. Riachi M. How pharmacists can help their dementia patients. Can Pharm J (Ott). 2016;149(2):67e69. 34. Kasper JD, Freedman VA, Spillman BC, Wolff JL. The disproportionate impact of dementia on family and unpaid caregiving to older adults. Health Aff (Millwood). 2015;34(10):1642e1649. 35. Administration on Aging. A profile of older Americans: 2011. Rockville, MD: US Department of Health and Human Services. Available at: http:// www.aoa.acl.gov/Aging_Statistics/Profile/2011/index.aspx. Accessed May 5, 2016. Marwa Noureldin, PharmD, MS, PhD, Postdoctoral Research Associate, School of Nursing, Purdue University, West Lafayette, IN; at time of project: PhD candidate, College of Pharmacy, Purdue University, West Lafayette, IN Matthew M. Murawski, RPh, PhD, Associate Professor of Pharmacy Administration, College of Pharmacy, Purdue University, West Lafayette, IN Holly L. Mason, PhD, Senior Associate Dean and Professor of Pharmacy Administration, College of Pharmacy, Purdue University, West Lafayette, IN Gerald C. Hyner, PhD, Professor of Health Promotion, College of Health and Human Sciences and Center on Aging and the Life Course, Purdue University, West Lafayette, IN Kimberly S. Plake, RPh, PhD, Associate Professor of Pharmacy Practice, College of Pharmacy and Center on Aging and the Life Course, Purdue University, West Lafayette, IN
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Appendix 1 Identifying primary caregivers To identify a primary caregiver for each National Health and Aging Trends Study (NHATS) participant (i.e., care recipient), a care index was created based on previous research by the National Alliance for Caregiving (NAC) and used to distinguish one primary caregiver when multiple caregivers were interviewed.1 The NAC defines the primary caregiver as a “person who provides all or the majority of unpaid care for the care recipient.” The NAC level of care index assigns points to the number of total hours of care per week that caregivers provide care as well as the amount and type of caregivers’ involvement in activities of daily living (ADLs) and instrumental activities of daily living (IADLs). The index categorizes burden of care as low, medium, or high based on the total assigned points.1 Because the variables in the National Study of Caregiving (NSOC) were slightly different regarding what they measured and the response categories, a similar care index was created based on total hours of care per month and frequency of involvement in both ADL and IADL care functions. Total hours of care per month were calculated based on items in the NSOC dataset that asked caregivers whether they provided regular or varied care, how many hours of care they provided each day, and how many days a week they provided care. The mean number of hours of care per month was 86.7 ± 124 hours with a range of 1 to 744 hours (n ¼ 1829). Points were assigned similarly to the NAC index,1 with 1 point assigned for 0 to 32 hours of care and 4 points assigned for more than 160 hours of care (Supplementary Table 1). Frequency of involvement in ADLs was calculated based on the summed score of 2 items asking how often caregivers helped care recipients with a) personal care activities and b) getting around. Each item’s response ranged from 1 ¼ never
to 5 ¼ every day, so the total summed score ranged from 2 to 10. Likewise, frequency of involvement in IADLs was calculated based on the summed score of 2 items asking how often caregivers helped with a) household chores and b) shopping, with a possible score range of 2 to 10. Frequency of involvement was subsequently categorized into 3 categories: a) most days/every day (scale scores 8-10 ¼ 3 points), b) some days (scale scores 5-7 ¼ 2 points), and c) rarely/never (scale scores 2-4 ¼ 1 point) for both ADL and IADL scales (Supplementary Table 2). The combined care index sums up the points from: a) total hours of care per month (range 1-4 points), 2) frequency of involvement in ADLs (1-3 points), and 2) frequency of involvement in IADLs (1-3 points), for a total possible index score range of 3 to 10 points. For multiple caregivers per NHATS participant, the caregiver with the highest index score was identified as the primary caregiver. Of the 2007 caregivers in the NSOC sample, 901 were the sole caregiver of the NHATS participants and were included in the final sample. Of the remaining 1106 caregivers, 468 caregivers were identified as primary and the remaining 638 caregivers were removed from the sample as nonprimary caregivers. The final sample for this study’s analysis consisted of 1369 primary caregivers. Appendix 2
Supplementary Table 1 Total hours of care per month and associated point values Hours of care per month
Point value
0-32 33-80 81-160 161
1 2 3 4 Supplementary Figure 1. Caregiver relationship by top 3 sources of assistance sought by caregivers.
Supplementary Table 2 Activities of daily living (ADL) or instrumental activities of daily living (IADL) scale score and associated frequencies of involvement and point values ADL or IADL scale score 2-4 5-7 8-10
177.e1
Frequency of involvement
Point value
Never/rarely Some days Most days/every day
1 2 3
Supplementary Reference 1. National Alliance for Caregiving and American Association of Retired Persons. Caregiving in the United States, 2009. Available at: http://www. caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf. Accessed May 5, 2016.
Contents lists available at ScienceDirect
Journal of the American Pharmacists Association journal homepage: www.japha.org
RESEARCH
The association between family caregivers’ involvement in managing older adults’ medications and caregivers’ information-seeking behavior Marwa Noureldin*, Matthew M. Murawski, Holly L. Mason, Gerald C. Hyner, Kimberly S. Plake a r t i c l e i n f o
a b s t r a c t
Article history: Received 6 June 2016 Accepted 4 December 2016
Objectives: 1) To explore the association between family caregivers’ involvement in managing care recipients’ medications and their information-seeking behavior related to caregiving; and 2) to examine the sources used by caregivers when seeking information. Methods: A retrospective analysis of cross-sectional data from 2 national studies, the 2011 National Health and Aging Trends Study (NHATS) and its supplement, the National Study of Caregiving (NSOC), was conducted. A nationally representative sample of community-dwelling adults (65 years of age) completed NHATS interviews, and a sample of their family caregivers participated in NSOC. Caregiver involvement in medication management was assessed with the use of 2 items asking caregivers if they helped keep track of care recipients’ medications or helped with injecting medications. Information seeking was assessed with the use of an item asking caregivers if they ever looked for caregiving-related information. Results: Out of 1367 caregivers interviewed, 54% reported helping to keep track of care recipients’ medications and 8.7% assisting with injecting medications. Approximately 10.2% (n ¼ 149) of caregivers reported seeking information to help them care for their care recipients. Caregivers sought information primarily on their own either through online resources or asking friends or relatives (73.3%). Sixty-four percent also sought information from medical providers or social workers. Adult children of caregivers were more likely to seek information for their older adult parents, based on bivariate analysis (P <0.01). In multivariable-adjusted models, caregivers who helped to keep track of medications had 2.30 (95% confidence interval [CI] 1.18 to 4.51) times higher odds of seeking information to help them to provide care for their care recipients. Caregivers helping with injecting medications were less likely to seek information (odds ratio 0.32, 95% CI 0.14 to 0.76). Conclusion: Specific caregiver responsibilities, such as assisting with medication management activities, are associated with caregivers’ information-seeking behavior related to care recipients’ health. Health care providers, including pharmacists, can play an important role in helping caregivers to identify proper resources for information and in educating them about medication management. © 2017 American Pharmacists Association®. Published by Elsevier Inc. All rights reserved.
Disclosure: The authors declare no conflicts of interest. Previous presentation: International Society for Pharmacoeconomics and Outcomes Research 20th Annual International Meeting, Philadelphia, PA, May 2015. * Correspondence: Marwa Noureldin, Purdue University School of Nursing, Johnson Hall, 502 N. University St., West Lafayette, IN 47907. E-mail address: [email protected] (M. Noureldin).
An estimated 14.3% of U.S. adults, or about 34.2 million individuals, serve as family or informal caregivers for adults 50 years of age or older.1 Family caregivers remain the main source of long-term care support for older adults,2,3 and the economic value of informal caregiving has been estimated to be $450 billion.3 With the aging of the U.S. population and the burden of chronic disease on older adults,4 family caregivers are increasingly responsible for older adults’ care coordination and play key roles in the management of care recipients’ health and well-being, including medication management.5-7
http://dx.doi.org/10.1016/j.japh.2016.12.061 1544-3191/© 2017 American Pharmacists Association®. Published by Elsevier Inc. All rights reserved.
SCIENCE AND PRACTICE Caregiver medication management and information seeking
Key Points Background: Family caregivers play key roles in the management of care recipients’ health and well-being, including medication management. Caregivers report a wide range of information and support needs for their responsibilities, but few studies have examined caregivers’ informationseeking behavior and its relationship to caregiving responsibilities, such as medication management. A better understanding of the relationship between family caregivers’ involvement in medication management and their information-seeking behavior can inform pharmacy practice and research on the importance of integrating caregivers in the patient care process. Findings: More than one-half of caregivers (54.2%) helped older adults to keep track of their medication regimens, and 8.7% helped with injecting medications. In addition, 10.2% reported seeking information to help them in providing care to their care recipients. Caregivers who helped care recipients with keeping track of their medications were significantly more likely to seek information. This suggests that managing medication regimens might be one of several triggers that prompts caregivers to look for information related to their caregiving responsibilities. Health care providers, including pharmacists, can play a more proactive role in engaging and educating caregivers during counseling sessions and inquiring about caregivers’ potential information needs.
stated that they want more training with medication management.10 Several studies have examined caregivers’ information and support needs,10,18,19 but there has been less emphasis on caregivers’ information-seeking behavior when providing care for a family member or friend. Studies examining information seeking are mainly focused on caregivers’ use of technology or online sources to find information or assist with care recipients’ care.20-22 However, it is unclear how specific caregiving responsibilities, such as caregivers’ involvement in managing older adults’ medications, are related to information seeking. Based on the health communication literature, information seeking is defined as a behavior to fulfill a perceived need for information and characterized based on individuals’ triggers to seek information, the sources used, and the type of information sought.23 Informational and skillbased needs may serve as triggers for caregivers to seek information or training to help them in providing care.23 For example, concerns related to medication administration, including lack of education regarding medication-specific issues,14,16 may create situations that prompt caregivers to seek information to fulfill their informational needs. Examination of the relationship between caregivers’ involvement in medication management and their information-seeking behavior may enhance the understanding of caregivers’ experiences with managing care recipients’ health and can be useful in informing pharmacy practice and research. Objectives The purpose of the present study was to explore the association between family caregivers’ involvement in the management of older adults’ medications and their experience in seeking caregiving-related information. An additional objective was to examine the sources of information that caregivers used when they looked for information. Methods
In the caregiving literature, medication management has been formerly categorized as a high-level instrumental activity of daily living (IADL)8 or as a medically related task.9,10 Medication management encompasses more than medication adherence,11 and caregivers’ involvement in medication management may include multiple activities, such as ordering and picking up medications, keeping track of medications to ensure that the correct medication is taken at the right time, and administering medications.10,12-14 Reinhard et al. reported that among caregivers who manage medications, 61% considered it to be a hard task.10 Medication management by caregivers may have a significant impact on care recipients’ disease management and health outcomes, and this multifaceted responsibility can also lead to increased caregiver burden or stress.13,15 Access to reliable and credible information is an important factor that can influence caregivers’ ability to manage chronic conditions and medications. Yet caregivers report receiving little support or training to assist with responsibilities, including medication management.5,16 Only 16% of family caregivers for adults (50 years of age) have obtained any formal caregiver training,17 15% reported receiving training from a pharmacist, and 24% of caregivers
Study population Caregiver and care recipient data from Round One of the National Health and Aging Trends Study (NHATS) and its supplement, the National Study of Caregiving (NSOC), were utilized for this retrospective cross-sectional study. NHATS and NSOC are sponsored by the US National Institute on Aging (grant no. U01AG032947) and were conducted by Johns Hopkins University Bloomberg School of Public Health in 2011.24 NHATS was designed to follow a nationally representative cohort of Medicare beneficiaries (65 years of age) on an annual basis, and the Medicare enrollment database served as the sampling frame for NHATS.24 Participants had to be: a) 65 years of age or older as of September 30, 2010, b) with no date of death, and c) residing in 1 of the 655 sampled zip clusters previously determined by NHATS investigators. NHATS Round One participants were selected with the use of a stratified 3-stage sampling design. A total of 8245 Medicare beneficiaries were enrolled in Round One.25 NSOC is composed of a nationally representative sample of 2007 family caregivers (out of 4935 eligible caregivers) of NHATS Round One study participants. NHATS participants
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who indicated that they received assistance with self-care, mobility, or household activities from “helpers” and were willing to provide contact information of their helpers provided the sample of family caregivers for the NSOC.26 Eligible caregivers were individuals who: a) had helped the NHATS participant (i.e., care recipient) with a self-care, mobility, or household activity and 2) were related to the participant or were an unrelated unpaid helper. Caregivers were interviewed for 30 minutes and asked questions addressing their care activities, duration of care, aspects of caregiving, their support environment, their health, and demographics.26 Based on the NSOC design, all eligible caregivers for NHATS participants were interviewed, thus yielding multiple caregivers for some care recipients. For the purposes of analysis, only 1 caregiver per NHATS participant was included in this study. To identify a primary caregiver for each NHATS participant (i.e., care recipient), the authors created a care index similar to one created by the National Alliance for Caregiving and used it to distinguish 1 primary caregiver when multiple caregivers were interviewed in the NSOC.17 Information on how primary caregivers were identified can be found in Appendix 1 (available on JAPhA.org as supplemental content). A total of 638 caregivers were removed from the sample as nonprimary caregivers. Therefore, the final sample for the present analysis consisted of 1369 primary caregivers and their respective care recipients.
Measures Demographic and caregiving variables Demographic and health variables for NHATS participants (i.e., care recipients) were obtained from the NHATS Round One data files and included age, gender, race/ethnicity, education level, and number and type of health conditions. Age was provided as both a continuous variable and a categoric variable. The categoric variable was collapsed from 6 into 4 categories (65-69 years, 70-79 years, 80-89 years, and 90 years). Similar to other NHATS-related studies, race/ethnicity was divided into 4 categories (white non-Hispanic, black non-Hispanic, Hispanic, and other). Education was collapsed from 9 categories (1 ¼ no schooling; to 9 ¼ master, professional, or doctoral degree) to 4 categories (1 ¼ no degree; to 4 ¼ bachelor, professional, master, or doctoral degree). Care recipients’ health conditions were determined based on variables asking if NHATS participants were diagnosed with the following conditions: heart attack, heart disease (including angina, congestive heart failure), high blood pressure, arthritis (osteoarthritis or rheumatoid), osteoporosis, diabetes, lung disease (such as emphysema, asthma, or chronic bronchitis), a stroke, dementia or Alzheimer disease, or cancer (yes/no). Caregivers’ demographics were obtained from the NSOC data files and included age, gender, education, and relationship to the care recipient. Caregiving variables included living arrangement, duration of caregiving, and involvement in activities of daily living (ADLs), IADLs, and medical tasks. Age was calculated based on the birth date provided in the NSOC data files and examined as both a continuous and a categoric variable (18-49 years, 50-59 years, 60-69 years, and 70 years). Caregivers’ education was collapsed from 9 to 4 categories (1 ¼ no degree; to 4 ¼ bachelor, professional, master, or doctoral degree). Race was not asked of caregivers. 172
Relationship was collapsed from 30 categories to 3 (1 ¼ spouse, 2 ¼ child; 3 ¼ other). Caregivers were asked if they were living with their care recipient (yes/no; living arrangement) and how long they had been providing care for the care recipient (duration of caregiving). Involvement in ADLs was calculated based on the summed score of 2 items asking how often caregivers helped care recipients with a) personal care activities and b) getting around. Each item’s response ranged from 1 ¼ never to 5 ¼ every day so the total summed score ranged from 2 to 10. Likewise, involvement in IADLs was calculated based on the summed score of 2 items asking how often caregivers helped with a) household chores and b) shopping, with a possible summed score range of 2 to 10. Caregiver involvement in medical tasks was measured based on an item asking the caregiver if they had helped the care recipient in the last month with managing medical tasks (i.e., ostomy care, IVs, testing blood; yes/no). Medication management variables Caregivers’ assistance with medication management was operationalized based on previous literature27 and measured with the use of 2 items in the NSOC dataset: a) if the caregiver ever helped care recipients keep track of medications in the last month, or b) if they helped care recipients take shots or injections (yes/no). Keeping track of medications was defined by NHATS investigators as “making sure the correct medication is taken at the correct time.”12 Information-seeking behavior variable Caregivers’ information-seeking behavior was measured with the use of an item that asked caregivers if they had ever looked for information, training, or services to help in their care for the care recipient (yes/no). Caregivers who looked for information were also asked the source of the information, that is, a government or community agency, a medical care provider or social worker, a church or synagogue, an employer, or on their own (e.g., looking online, asking a friend, or other). Data analysis NHATS Round One data files are publicly available for download and analysis; however, NSOC data files are considered to be sensitive and require additional permission for access. NHATS and NSOC data files may be linked. Permission for the use of the NSOC data was obtained via a sensitive data use agreement. The present study was deemed to be exempt by the Institutional Review Board of Purdue University. Data were analyzed with the use of SPSS v. 23 software (SPSS, Inc., Armonk, NY). Weighted analysis was conducted to provide valid statistical estimates of the population and adjust for the complex sample design, including oversampling.28 NHATS investigators recommend use of sample weights with both descriptive statistics and regression analysis (J. Kasper, personal communication, February 5, 2015). Taylor series linearization was used to compute valid standard errors for estimates.26 An alpha of 0.05 was used to determine statistical significance. Descriptive statistics, including weighted percentages, means, and standard errors, were used to summarize relevant variables. Bivariate analyses between the 2 independent variables (keeping track and injecting medications) and the
SCIENCE AND PRACTICE Caregiver medication management and information seeking
provided assistance with medical tasks, such as IVs, blood testing, and ostomy care. Based on weighted analysis of data from NHATS Round One, the majority of care recipients in the US were female (65.6%), white (77.3%), and 70 years of age or greater (83.2%; Table 2). They reported an average 3.4 ± 0.06 health conditions (range 0-9), most commonly high blood pressure (72.0%), osteoarthritis or rheumatoid arthritis (68.4%), and diabetes (35.1%). Among 1367 primary caregivers, 54.5% indicated they had helped the care recipient keep track of medications in the last month and 8.7% indicated providing assistance with injections; 10.2% of caregivers reported ever looking for information to help them care for their care recipients. Based on bivariate analyses, caregivers who looked for information were significantly more likely to be younger, children of the care recipient, assisting with ADLs, or managing medical tasks for the care recipient compared with caregivers who did not look for information (P <0.05; Table 1). In addition, caregivers who reported keeping track of care recipients’ medications, or caring for a care recipient with dementia, or caring for a care recipient with no educational degree were also more likely to look for information to help them with caregiving (P <0.05). Caregivers who reported looking for information (n ¼ 149) indicated several information sources from which they sought help in caring for the care recipient, as presented in Table 3. The majority of caregivers (73.3%) looked for information on their own or using the Internet or friends, 63.7% reported looking for information from a medical provider or a social worker, and 59.6% reported looking for information from governmental or community agencies (e.g., area agency on aging, senior centers, aging and disability resource centers).
dependent variable (information seeking) were performed, as well as between the sociodemographic, caregiving, and care recipient health variables and the dependent variables with the use of the adjusted Wald chi-square statistic. A multivariate logistic regression model was developed to examine the association between caregivers’ assistance with keeping track of medications and their information-seeking behavior, while controlling for caregivers’ age, gender, and education as well as care recipients’ age, gender, race, and education. Additional control variables included caregiving items, such as duration of caregiving (1 year or >1 year); living arrangement; involvement in ADLs, IADLs, and medical tasks; and care recipient health conditions. A similar model was developed examining the association between caregivers’ involvement in injecting medications and their information-seeking behavior with the same control variables. Both caregiver and care recipient factors are likely to play a role in caregivers’ information-seeking behavior, based on information-seeking literature.23
Results Based on weighted analysis of nationally representative data from the NSOC, the majority of primary caregivers in the United States were female (60.2%), with an overall mean age of 59.8 ± 0.62 years (Table 1). Forty-seven percent were children of the care recipient, and 54.2% were living with the care recipient. Caregivers had been providing care for an average 7.9 ± 0.38 years. Nineteen percent provided assistance with ADLs on most days or every day, and 47.1% provided assistance with IADLs on most days or every day. Twelve percent Table 1 Caregiver sociodemographic, caregiving characteristics, and information seeking Caregiver characteristic Mean age (y) Age category (y) 18-49 50-59 60-69 70 Female Education No degree High school degree Some college, technical, associate degree Bachelor, professional, PhD degree Relationship to the care recipient Spouse Child Other Living with care recipient Number of years caregivinga Activities of daily livingb Instrumental activities of daily livingc Involvement in medical tasks (e.g., ostomy care, IVs, etc.)
Total sample (n ¼ 1369)
Looked for information (n ¼ 149)
Did not look for information (n ¼ 1203)
P value
59.8 (0.62)
55.0 (1.49)
60.2 (0.63)
<0.001
247 326 395 359 919
(22.9%) (23.1%) (28.5%) (25.4%) (60.2%)
38 45 34 26 104
(31.8%) (35.8%) (17.5%) (14.8%) (58.4%)
207 280 360 326 803
(21.9%) (21.8%) (30.1%) (26.1%) (60.6%)
187 371 451 345
(14.0%) (27.3%) (33.5%) (25.2%)
18 40 50 41
(14.0%) (28.1%) (33.8%) (24.0%)
168 328 396 302
(14.0%) (27.1%) (33.5%) (25.4%)
390 681 298 796 7.9 4.9 6.8 177
(29.5%) (47.1%) (23.4%) (54.2%) (0.38) (0.09) (0.09) (11.9%)
30 98 21 96 7.2 5.6 7.0 29
(17.5%) (66.0%) (16.4%) (55.2%) (0.62) (0.30) (0.26) (19.2%)
354 575 274 689 8.0 4.8 6.8 146
(30.6%) (45.0%) (24.4%) (53.9%) (0.42) (0.09) (0.09) (10.9%)
0.738 0.989
0.001
0.827 0.330 0.004 0.326 0.003
All values are presented as n (weighted %) or mean (SE). a Range 0-70 years. b Summed frequency of performing activities based on 2 items (personal care and getting around). Out of a possible 10, range 2-10 (2 ¼ never for both activities; 10 ¼ every day for both activities). c Summed frequency of performing activities based on 2 items (household chores and shopping). Out of a possible 10, range 2-10 (2 ¼ never for both activities; 10 ¼ every day for both activities).
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Table 2 Characteristics of National Health and Aging Trends Study participants (i.e., the care recipients) Care recipient characteristic Mean age (y) Age category (y) 65-69 70-79 80-89 90 Female Race (n ¼ 1366) White non-Hispanic Black non-Hispanic Hispanic Other Education (n ¼ 1361) No degree High school degree Some college, technical, associate degree Bachelor, professional, PhD degree Health conditions (n ¼ 1361) High blood pressure Arthritis Diabetes Osteoporosis Cancer Heart disease Lung disease Stroke Heart attack Dementia No. of conditions (n ¼ 1343)a
Total 79.3 (0.25) 147 378 583 261 925
(16.8%) (32.6%) (38.8%) (11.8%) (65.6%)
849 392 93 32
(77.3%) (11.8%) (8.0%) (2.8%)
518 360 304 179
(31.7%) (28.2%) (25.3%) (14.8%)
1007 944 462 378 373 356 281 316 291 272 3.4
(72.0%) (68.4%) (35.1%) (30.1%) (28.7%) (25.5%) (22.3%) (21.6%) (20.8%) (17.2%) (0.06)
All values are presented as n (weighted %) or mean (SE). n ¼ 1369 unless otherwise indicated. a Out of a possible 10, range 0-9.
The top 3 sources of assistance sought varied by caregivers’ relationships with the care recipients. Children of care recipients were the most likely to seek information regardless of source used; however, spousal caregivers tended to seek information from medical providers or social workers more than other sources. Specifically, they composed 13.8% of caregivers who looked for information on their own, but they composed 21.6% of caregivers who sought information from medical providers or social workers. Supplementary Figure 1 depicting these relationships can be found in Appendix 2 (available on JAPhA.org as supplemental content). Results from multivariate models indicated that caregivers’ assistance in either keeping track of or injecting care recipient medications were associated with looking for information even after adjusting for sociodemographic, caregiving, and care recipient health variables. As presented in Table 4, caregivers who reported keeping track of medications had 2.30 (95% confidence interval [CI] 1.18 to 4.51) times higher odds of Table 3 Sources of information reported by caregivers (n ¼ 149) Source of information On own (internet, library, friend) Medical provider or social worker Government or community agency Religious organization (church or synagogue) Other
n (weighted %) 105 99 90 14 10
(73.3%) (63.7%) (59.6%) (10.7%) (6.4%)
Multiple responses possible, so percentages do not add up to 100.
174
looking for information compared with caregivers who did not assist with keeping track of medications. On the other hand, caregivers who assisted with injecting medications were significantly less likely to look for information (odds ratio [OR] 0.32, 95% CI 0.14 to 0.76) than caregivers who did not help with medication injection. In addition, caregivers who cared for a family member with dementia had more than twofold odds of looking for information in both models.
Discussion This study provides several relevant findings related to how caregivers’ involvement in specific health-related behaviors, such as managing medications, is associated with their overall information-seeking behavior. To our knowledge, few, if any, studies have examined this relationship, especially on a national level, yet the findings have important practice and research implications. Based on the results, caregiver involvement in medication management responsibilities, including both ensuring that the correct medication is given at the appropriate time and administration of injectable medication, are significantly associated with information-seeking behavior, even after adjusting for sociodemographic characteristics, caregiving factors, and care recipient’s health. Caregivers who helped older adults to keep track of medications had more than twofold higher odds of looking for information to help them to care for their care recipients. Assisting older adults with their medications and ensuring that they are taking medication appropriately may be regarded as a potential external trigger that prompts family caregivers to seek out information to help them in providing care to their relatives, which is in line with previous literature on informationseeking behavior.23 On the other hand, caregivers who were helping to inject medications had significantly lower odds of looking for information. It is not clear why there is an inverse relationship between these 2 caregiving behaviors. One potential explanation might be related to issues in the dataset, because the percentage of caregivers who both helped with injecting medications and looked for information were a small subset of the caregiver sample, and that may have affected the results. Additional research is needed to further examine this relationship before this association can be generalized to other caregivers. Results also suggest that a substantial proportion of family caregivers (54.2%) are assisting care recipients in keeping track of their medications and making sure that they take the correct medications at the appropriate time, and 8.7% are helping with injecting medications. A national report indicated that 42% of caregivers have helped with giving medications to care recipients 50 years of age.17 As accessible members of the health care team, community pharmacists can play an important role in assisting caregivers as they manage older adults’ medications.29 Current research and practice tend to combine patients and caregivers as 1 audience30,31 without distinction between the differing needs of these 2 groups; however, caregiving studies indicate that the information needs of caregivers may be different from those of patients.13,18,19 Family caregiving has been described as a public health issue,3 and pharmacists can engage proactively with caregivers to provide appropriate education and help caregivers to develop the necessary skills to properly fulfill their
SCIENCE AND PRACTICE Caregiver medication management and information seeking
Table 4 Adjusted association of caregivers’ medication management assistance (either tracking medications or injecting medications) with odds of caregiver information seeking, adjusted OR (95% CI) Variable
Medication management assistance Caregiver age (y) Female caregiver Caregiver education No degree High school Some college, technical, etc. Bachelor, professional, PhD Caregiver relationship to care recipient Spouse/partner Child Other Care recipient age (y) Female care recipient White-non-Hispanic care recipient Care recipient education No degree High school degree Some college, technical, associate degree Bachelor, professional, PhD degree Care recipient health conditions High blood pressure Arthritis Diabetes Osteoporosis Cancer Heart disease Lung disease Stroke Heart attack Dementia Caregiver living with care recipient Caregiving >1 y Activities of daily living involvement Instrumental activities of daily living involvement Involvement in medical tasks (e.g., ostomy care, IVs, etc.)
Adjusted OR (95% CI) for information seeking Keeping track of medicationsa
Injecting medicationsb
2.30 (1.18-4.51)* 0.97 (0.95-1.00)* 0.88 (0.53-1.48)
0.32 (0.14-0.76)* 0.98 (0.96-1.00)* 0.90 (0.54-1.51)
1.00 0.96 (0.43-2.16) 0.78 (0.34-1.78) 1.02 (0.38-2.73)
1.00 1.01 (0.44-2.31) 0.77 (0.33-1.78) 0.94 (0.35-2.48)
1.00 1.41 0.70 1.00 0.87 1.51
1.00 1.63 0.79 1.00 0.88 1.45
(0.57-3.48) (0.23-2.10) (0.96-1.03) (0.51-1.49) (0.87-2.65)
(0.67-3.97) (0.26-2.43) (0.96-1.03) (0.51-1.51) (0.85-2.47)
1.00 0.51 (0.27-0.95)* 0.44 (0.23-0.86)* 0.69 (0.29-1.63)
1.00 0.51 (0.27-0.99) 0.50 (0.24-1.07) 0.70 (0.29-1.70)
1.78 0.71 0.68 1.34 1.46 0.72 1.74 1.12 0.70 2.34 0.95 1.07 1.08 0.95 1.18
1.76 0.74 0.81 1.27 1.47 0.78 1.77 1.01 0.67 2.45 0.88 1.17 1.10 1.03 1.76
(0.91-3.46) (0.40-1.26) (0.35-1.30) (0.89-2.02) (0.87-2.47) (0.35-1.48) (0.99-3.07) (0.60-2.08) (0.32-1.55) (1.37-4.00)** (0.53-1.69) (0.38-3.05) (0.99-1.17) (0.82-1.10) (0.52-2.68)
(0.92-3.38) (0.41-1.32) (0.41-1.61) (0.79-2.04) (0.86-2.51) (0.38-1.61) (0.95-3.30) (0.54-1.89) (0.32-1.39) (1.45-4.16)** (0.49-1.59) (0.41-3.31) (1.02-1.20)* (0.90-1.18) (0.79-3.88)
Abbreviations used: OR, odds ratio; CI, confidence interval. *P <0.05; **P <0.01. a Adjusted Wald c2 ¼ 36.23; P <0.01. b Adjusted Wald c2 ¼ 37.65; P <0.00.
various caregiving responsibilities. For example, for patients who have a family caregiver involved in managing medications on a regular basis, pharmacists can engage the caregiver during pharmacy counseling encounters or during medication therapy management sessions and identify or address both the patients’ and caregivers’ information needs to ensure appropriate medication use. Caregivers providing care to dementia patients may be an important subgroup of caregivers whom pharmacists can target for counseling during pharmacy encounters.32,33 It is well documented that caregivers of adults with dementia have a more intense caregiving load, provide greater assistance to their care recipients,27,34 and lack the necessary information and training to provide adequate care.5 The present study’s results reveal that this group is also more likely to look for information to assist with caregiving. Pharmacists may serve as key resources in assisting these caregivers with their responsibilities. Overall, this study found that 10.2% of caregivers reported ever looking for information, despite national reports of
significant information and support gaps among caregivers.1,5,19 A recent national report indicated that 43% of caregivers are performing medical tasks without any previous preparation,1 and another study reported that 61% of caregivers learned how to manage medications on their own.10 Caregivers may be unaware of available resources or programs, or they may lack time to look for information. More research is warranted to investigate this issue and examine other aspects of the information-seeking process. Among caregivers who did look for information, sources sought by caregivers consisted primarily of utilization of online resources or asking relatives or friends (73.3%) and seeking information from a medical provider or social worker (63.7%). Children of the care recipients were more likely to look for caregiving-related information overall and tended to look for that information on their own. Previous studies have pointed to the Internet as a common resource for caregivers, especially children caregivers, when looking for a wide range of caregiving-related information and support.20-22 Online 175
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resources are seen as a fairly accessible resource for many individuals, although several potential issues may arise when searching for information online, including the quality and reliability of the information, and how effective it is in meeting caregivers’ educational needs. This is another area where pharmacists can play an essential role in helping caregivers identify proper health-related and medication-related educational and training resources.
Limitations This study has several limitations. Because it was a retrospective study analyzing a secondary dataset, analysis was dependent on the preexisting items in the NHATS and NSOC datasets and how the variables were measured. For example, although NHATS and NSOC distinguish between different medication-related tasks, such as keeping track of and injecting medications, there is no information on the number or type of medications. In addition, measuring information seeking was limited to a broad item in the NSOC dataset that asked caregivers if they ever looked for any information to help them to assist with caring for their relatives, not solely medication-related information. However, given the small percentage of caregivers who looked for information, it is likely that even fewer caregivers have received specific information or education to help them manage care recipients’ medications. Based on the health communication literature, health information-seeking behavior is influenced by sociodemographic and personal factors, including individuals’ health beliefs and self-efficacy, as well as individuals’ age, gender, race/ethnicity, education, and health literacy. Some of these factors, such as caregivers’ self-efficacy and health literacy, as well as their baseline knowledge relating to various caregiving responsibilities, were not available in the datasets. Items that asked about sources of information were doublebarreled, for example, medical providers and social workers were combined into 1 category, and it was not clear if medical providers were only physicians or included other professionals, making it challenging to more comprehensively evaluate sources of information used by caregivers. Because all responses were self-reported, either from the caregiver or the older adult care recipient, responses may have been subject to recall bias. In addition, owing to the cross-sectional nature of the survey data, only associations between the variables can be highlighted and no causality can be demonstrated. This should be taken into consideration when determining relationships between the variables examined in this study. Despite the limitations, this study has several strengths, including the analysis of a nationally representative sample of older adult care recipients and their family caregivers. The distribution of NHATS respondents is representative of older adults in the US, based on the national profile of older adults in terms of age, gender, race, education, and number of health conditions.35 In addition, caregiver characteristics in this study sample are in line with caregiver characteristics in previous national reports regarding age, gender, education, and relationship to care recipient.1,10 Using nationally representative data helps to improve generalizability of the results. Using the NHATS and NSOC datasets was unique, because the NSOC specifically examined caregivers of Medicare beneficiaries and linked caregivers to their care recipients. 176
Conclusion Based on nationally representative data, this study’s results indicate that more than one-half of family caregivers of older adults are assisting with management of care recipient medications, and involvement in this responsibility is associated with caregivers’ information-seeking behavior. Practice and research implications stem from this study’s findings, including addressing the educational needs of caregivers as they continue to take on more complex tasks, such as medication management. Results of this study highlight the need for health care providers, including pharmacists, to play a more proactive role in assessing caregivers’ information needs and providing individualized education related to medication management. Future studies should examine the types of education or training caregivers currently receive to assist them with specific caregiving tasks, such as medication management, and whether it has been effective in improving caregivers’ management of care recipients’ health. Barriers preventing caregivers from seeking information also should be explored as well as the role of pharmacists in educating caregivers about medication management. Collectively this information would inform the development of tailored and accessible interventions aimed at actively engaging and educating family caregivers to optimize caregiving and improve care recipients’ health outcomes. References 1. National Alliance for Caregiving and American Association of Retired Persons. Caregiving in the United States, 2015-a focused look at caregivers of adults age 50þ. Available at: http://www.caregiving.org/ caregiving2015/. Accessed May 5, 2016. 2. Chari AV, Engberg J, Ray KN, Mehrotra A. The opportunity costs of informal elder-care in the United States: new estimates from the American time use survey. Health Serv Res. 2015;50(3):871e882. 3. Feinberg LF, Reinhard SC, Houser A, Choula R. Valuing the invaluable: 2011 update. The growing contributions and costs of family caregiving. American Association of Retired Persons Public Policy Institute. Available at: http://www.aarp.org/relationships/caregiving/info-07-2011/valuingfs.html. Accessed May 5, 2016. 4. Centers for Disease Control and Prevention. The state of aging and health in America 2013. Atlanta, GA: US Department of Health and Human Services. Available at: http://www.cdc.gov/aging/help/dph-aging/stateaging-health.html. Accessed May 5, 2016. 5. Gillespie R, Mullan J, Harrison L. Managing medications: the role of informal caregivers of older adults and people living with dementia. A review of the literature. J Clin Nurs. 2014;23(23-24):3296e3308. 6. Levine C, Halper D, Peist A, Gould DA. Bridging troubled waters: family caregivers, transitions, and long-term care. Health Aff (Millwood). 2010;29(1):116e124. 7. Zarit SH, Reamy AM. Future directions in family and professional caregiving for the elderly. Gerontology. 2013;59:152e158. 8. Elliot RA, Marriott JL. Standardised assessment of patients’ capacity to manage medications: a systematic review of published instruments. BMC Geriatr. 2009;9:27. 9. Donelan K, Hill CA, Hoffman C, et al. Challenges to care: informal caregivers in a changing health system. Health Aff (Millwood). 2002;21(4): 222e231. 10. Reinhard SC, Levine C, Samis S. Home alone: family caregivers providing complex chronic care; 2012. American Association of Retired Persons and United Hospital Fund. Available at: http://www.aarp.org/home-family/caregiving/ info-10-2012/home-alone-family-caregivers-providing-complex-chroniccare.html. Accessed May 5, 2016. 11. Banning M. Older people and adherence with medication: a review of the literature. Int J Nurs Stud. 2008;45(10):1550e1561. 12. Wolff JL, Spillman BC. Older adults receiving assistance with their physician visits and prescribed medications and their family caregivers: prevelance, characteristics, and hours of care. J Gerontol B Psychol Sci Soc Sci. 2014;69(7):S65eS72.
SCIENCE AND PRACTICE Caregiver medication management and information seeking
13. Smith F, Francis SA, Gray N, et al. A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services. Health Soc Care Commun. 2003;11(2):138e145. 14. Travis SS, Bethea LS, Winn P. Medication administration hassles reported by family caregivers of dependent elderly persons. J Gerontol A Biol Sci Med Sci. 2000;55(7):M412eM417. 15. Travis SS, Kao HFS, Acton GJ. Helping family members manage medication administration hassles. J Psychosoc Nurs Ment Health Serv. 2005;43(11):13e15. 16. Travis SS, McAuley WJ, Dmochowski J, et al. Factors associated with medication hassles experienced by family caregivers of older adults. Patient Educ Couns. 2007;66:51e57. 17. National Alliance for Caregiving and American Association of Retired Persons. Caregiving in the United States, 2009. Available at: http://www. caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf. Accessed May 5, 2016. 18. Wackerbarth SB, Johnson MMS. Essential information and support needs of family caregivers. Patient Educ Couns. 2002;47(2):95e100. 19. Washington KT, Meadows SE, Elliott SG, Koopman RJ. Information needs of informal caregivers of older adults with chronic health conditions. Patient Educ Couns. 2011;83:37e44. 20. Fox S, Brenner J. Family caregivers online. Washington, DC: Pew Research Center; 2012. Available at: http://pewinternet.org/Reports/2012/ Caregivers-online.aspx. Accessed May 5, 2016. 21. Kernisan LP, Sudore RL, Knight SJ. Information-seeking at a caregiving website: a qualitative analysis. J Med Internet Res. 2010;12(3):e31. 22. National Alliance for Caregiving and United Healthcare. E-Connected family caregiver: bringing caregiving into the 21st century; 2011. Available at: http://www.caregiving.org/data/FINAL_eConnected_Family_Caregiver_ Study_Jan%202011.pdf. Accessed May 5, 2016. 23. Galarce EM, Ramanadhan S, Viswanath K. Health information seeking. In: Thompson T, Parrot R, Nussbaum J, eds. The Routledge Handbook of Health Communication. 2nd ed. New York, NY: Routledge; 2011:167e180. 24. National Health and Aging Trends Study. Produced and distributed by www.nhats.org with funding from the National Institute on Aging (grant no. NIA U01AG329470). 25. Montaquila J, Freedman VA, Edwards B, Kasper JD. National health and aging trends study round 1 sample design and selection. NHATS Technical Paper #1. Baltimore, MD: Johns Hopkins University School of Public Health; 2012. Available at: www.NHATS.org. Accessed May 5, 2016. 26. Kasper JD, Freedman VA, Spillman BC. National study of caregiving user guide. Baltimore, MD: John Hopkins University School of Public Health; 2013. Available at: www.nhats.org. Accessed May 5, 2016.
27. Wolff JL, Spillman BC, Freedman VA, Kasper JD. A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med. 2016;176(3):372e379. 28. Siller AB, Tompkins L. The big four: analyzing complex sample suvey data using SAS, SPSS, STATA, and SUDAAN. Poster presented in SUGI 31 Proceedings, San Francisco, CA, March 2006. Available at: http://www2.sas.com/proceedings/sugi31/172-31.pdf. Accessed May 5, 2016. 29. McMillan SS, Sav A, Kelly F, et al. Is the pharmacy procession innovative enough?: meeting the needs of Australian residents with chronic conditions and their carers using nominal group technique. BMC Health Serv Res. 2014;14:476. 30. Cappuzzo KA. Communicating with seniors and their caregivers. Consult Pharm. 2008;23(9):695e709. 31. Krueger JL, Hermansen-Kobulnicky CJ. Patient perspective of medication information desired and barriers to asking pharmacists questions. J Am Phar Assoc (2003). 2001;51(4):510e519. 32. Chang F, Patel J, Schulz ME. The “rising tide” of dementia in Canada: what does it mean for pharmacists and the people they care for? Can Pharm J (Ott). 2015;148(4):193e199. 33. Riachi M. How pharmacists can help their dementia patients. Can Pharm J (Ott). 2016;149(2):67e69. 34. Kasper JD, Freedman VA, Spillman BC, Wolff JL. The disproportionate impact of dementia on family and unpaid caregiving to older adults. Health Aff (Millwood). 2015;34(10):1642e1649. 35. Administration on Aging. A profile of older Americans: 2011. Rockville, MD: US Department of Health and Human Services. Available at: http:// www.aoa.acl.gov/Aging_Statistics/Profile/2011/index.aspx. Accessed May 5, 2016. Marwa Noureldin, PharmD, MS, PhD, Postdoctoral Research Associate, School of Nursing, Purdue University, West Lafayette, IN; at time of project: PhD candidate, College of Pharmacy, Purdue University, West Lafayette, IN Matthew M. Murawski, RPh, PhD, Associate Professor of Pharmacy Administration, College of Pharmacy, Purdue University, West Lafayette, IN Holly L. Mason, PhD, Senior Associate Dean and Professor of Pharmacy Administration, College of Pharmacy, Purdue University, West Lafayette, IN Gerald C. Hyner, PhD, Professor of Health Promotion, College of Health and Human Sciences and Center on Aging and the Life Course, Purdue University, West Lafayette, IN Kimberly S. Plake, RPh, PhD, Associate Professor of Pharmacy Practice, College of Pharmacy and Center on Aging and the Life Course, Purdue University, West Lafayette, IN
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Appendix 1 Identifying primary caregivers To identify a primary caregiver for each National Health and Aging Trends Study (NHATS) participant (i.e., care recipient), a care index was created based on previous research by the National Alliance for Caregiving (NAC) and used to distinguish one primary caregiver when multiple caregivers were interviewed.1 The NAC defines the primary caregiver as a “person who provides all or the majority of unpaid care for the care recipient.” The NAC level of care index assigns points to the number of total hours of care per week that caregivers provide care as well as the amount and type of caregivers’ involvement in activities of daily living (ADLs) and instrumental activities of daily living (IADLs). The index categorizes burden of care as low, medium, or high based on the total assigned points.1 Because the variables in the National Study of Caregiving (NSOC) were slightly different regarding what they measured and the response categories, a similar care index was created based on total hours of care per month and frequency of involvement in both ADL and IADL care functions. Total hours of care per month were calculated based on items in the NSOC dataset that asked caregivers whether they provided regular or varied care, how many hours of care they provided each day, and how many days a week they provided care. The mean number of hours of care per month was 86.7 ± 124 hours with a range of 1 to 744 hours (n ¼ 1829). Points were assigned similarly to the NAC index,1 with 1 point assigned for 0 to 32 hours of care and 4 points assigned for more than 160 hours of care (Supplementary Table 1). Frequency of involvement in ADLs was calculated based on the summed score of 2 items asking how often caregivers helped care recipients with a) personal care activities and b) getting around. Each item’s response ranged from 1 ¼ never
to 5 ¼ every day, so the total summed score ranged from 2 to 10. Likewise, frequency of involvement in IADLs was calculated based on the summed score of 2 items asking how often caregivers helped with a) household chores and b) shopping, with a possible score range of 2 to 10. Frequency of involvement was subsequently categorized into 3 categories: a) most days/every day (scale scores 8-10 ¼ 3 points), b) some days (scale scores 5-7 ¼ 2 points), and c) rarely/never (scale scores 2-4 ¼ 1 point) for both ADL and IADL scales (Supplementary Table 2). The combined care index sums up the points from: a) total hours of care per month (range 1-4 points), 2) frequency of involvement in ADLs (1-3 points), and 2) frequency of involvement in IADLs (1-3 points), for a total possible index score range of 3 to 10 points. For multiple caregivers per NHATS participant, the caregiver with the highest index score was identified as the primary caregiver. Of the 2007 caregivers in the NSOC sample, 901 were the sole caregiver of the NHATS participants and were included in the final sample. Of the remaining 1106 caregivers, 468 caregivers were identified as primary and the remaining 638 caregivers were removed from the sample as nonprimary caregivers. The final sample for this study’s analysis consisted of 1369 primary caregivers. Appendix 2
Supplementary Table 1 Total hours of care per month and associated point values Hours of care per month
Point value
0-32 33-80 81-160 161
1 2 3 4 Supplementary Figure 1. Caregiver relationship by top 3 sources of assistance sought by caregivers.
Supplementary Table 2 Activities of daily living (ADL) or instrumental activities of daily living (IADL) scale score and associated frequencies of involvement and point values ADL or IADL scale score 2-4 5-7 8-10
177.e1
Frequency of involvement
Point value
Never/rarely Some days Most days/every day
1 2 3
Supplementary Reference 1. National Alliance for Caregiving and American Association of Retired Persons. Caregiving in the United States, 2009. Available at: http://www. caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf. Accessed May 5, 2016.