Qualitative research suggests that family caregivers often fill in the gaps in the disjointed medical system.⁵ They fill multiple roles which can include the following: coordinating care across transitions, accessing and coordinating medical care services, communicating with physicians and services, and providing information regarding patients’ medical history.^5,13 Caregivers who engage in these tasks often experience difficulty accessing helpful information, assessing the quality of services, understanding what information is necessary to get services, and anticipating what will be needed.⁵

Previous studies have used the Oberst Task Time and Difficulty scale to measure the amount of time and difficulty caregivers have assisting with various tasks, including health care related, ADL, IADL, and emotional support tasks.^14,15 In two studies, indirect care such as managing health care bills or arranging transportation to doctor’s appointments were rated as most time consuming.^14,16 Increased caregiver-reported difficulty assisting with these types of task, among others, has been shown to be associated with increased negative emotional strain among caregivers to stroke survivors^15,17,18 and heart failure patients.¹⁹ The generalizability of these studies is limited due to a disease-specific focus, small sample sizes, and lack of rigorous statistical testing using multiple regression models. What remain unclear are the frequency and magnitude of health-care-specific task difficulty among diverse populations of caregivers to multimorbid older adults, and the association between caregiver difficulty assisting with health care tasks and caregiver outcomes.

Findings are also mixed when it comes to understanding the relationship between patient and caregiver characteristics and caregivers’ assessment of health care tasks as difficult. Studies of caregiver difficulty with medication administration and coordination showed that race and higher education, were associated with higher levels of difficulty.^20,21 Studies of caregivers to cancer patients suggested that the level of patient dependency was the most significant predictor of caregiver difficulty with any type of task.^14,18 Other disease-specific studies have shown factors such as family coping skills¹⁸ and a caregiver’s belief in their ability to control outcomes (e.g., self-efficacy)¹⁶ were inversely correlated with caregiver-reported overall task difficulty. However, these studies have not differentiated between factors associated with direct care (such as ADL care) and indirect care (such as assisting with health care tasks).

Each patient who reported receiving assistance with ADLs, IADLs or health care tasks (HCTs) was asked to identify the person (family or unpaid friend) who assisted them the most. These caregivers were then contacted and, upon completing informed consent, were administered an in-person caregiver interview by a professional survey research interviewer. Each caregiver enrolled in the study provided care for only one patient enrolled in the study. Patients identified 353 eligible caregivers, and response rate among eligible caregivers was 86% (n=308).

Scope of Caregiver Assistance Assistance was measured using caregiver-reported assistance with HCTs, IADLs and ADLs (e.g., “Do you help [person] with [task]??”). ADLs included dressing, eating, using the toilet, bathing, and transferring between a bed and chair. IADLs for this study included using the telephone, heavy housework, light housework, managing money and shopping. HCTs included eight tasks related to health care which all patients needed to perform and may have asked a caregiver to assist with (such as scheduling medical appointments), and 4 tasks which were considered “optional” because not all patients performed the task and therefore were never in the position of asking the caregiver for assistance (such as obtaining community services; see Table 1 for a complete list).

Caregivers in the study were categorized into three assistance groups: (1) helps with only HCT (N=43), (2) helps with IADL and HCT only (N=128), and (3) helps with ADL, IADL, and HCT (N=127). The ten caregivers who did not fit one of these three groups were added to the group which was most similar to their assistance pattern in a hierarchical fashion (see Table 2 for more detail). Sensitivity analyses showed that the inclusion of these ten caregivers did not influence results.

Health Care Task Difficulty Our HCTD scale was based on the Oberst Task Difficulty scale^14,17 and included eight HCTs applicable to all patients in the study (see Table 1). This scale has previously been validated in multi-morbid older adults and is strongly associated with health-related quality of life and quality of care.²⁵ For each HCT, caregivers were asked if they assisted the patient with the task and, if so, how much difficulty they had performing the task. Each item was then coded as 0=no difficulty or does not help, 1=some difficulty, and 2=a lot of difficulty. In the measurement of caregiver HCTD, “does not do task” was considered to be conceptually equal to “does task with no difficulty.²⁶” A summary score was created by adding values across the eight questions (range, 0–16). Due to the skew in the distribution of responses (skewness=2.12), caregivers’ HCTD summary scores were categorized as follows: no difficulty (HCTD=0), low difficulty (HCTD=1), medium difficulty (HCTD=2), and high difficulty (HCTD=3+).

Caregiver Self-Efficacy We used an eight-item scale, adapted from the chronic disease self-management efficacy scale,²⁷ in which caregivers reported how certain they were that they could handle different stressful caregiving situations using a scale of 0 to 10 (10 being very certain). The caregiving situations presented included managing general caregiving problems, maintaining a positive mood, improving mood, dealing with frustration, dealing with demands of caregiving, managing worries, getting information, and finding resources. A summary self-efficacy score was created by averaging all eight items.

Caregiver Outcomes The modified Caregiver Strain Index (CSI) was used to measure strain^25,28 and the Center for Epidemiological Studies Depression scale (CESD) was used to measure depression.²⁹ The CSI is a 13-item index (range, 0–24) used to screen for caregiver strain. The CESD is a 20-item scale (range, 0–60) used to self-report the presence of depressive symptoms. A score of 16 or above on the CESD is suggestive of clinically significant depression.

Independent Variables Caregiver variables assessed were age, gender, relationship to the patient, education, employment status, co-residence with the patient, co-residence with a child under the age of 18, average hours of care provided in a typical week, number of years spent caring for the patient, and self-rated health. We additionally assessed the caregiver-reported quality of their relationship with the care recipient and the caregiver’s level of satisfaction with caregiving on a scale of 1 to 10 (10 being the best possible).

Patient variables assessed in this study were age, gender, race, financial situation, and education. Patient health variables included the SF-36,³⁰ number of chronic conditions out of the 14 most common chronic conditions in the Medicare population,³¹ number of days confined to bed and in a nursing home in the previous month, and the HCC risk for future utilization.²⁴

Statistical Analysis Patients and caregivers across the three assistance groups and across the four difficulty groups were compared on the variables described above, using Cuzick’s non-parametric test for trends.

To test the hypothesis that caregiver self-efficacy was associated with health care task difficulty, ordinal multivariate logistic regression was used to determine the odds of caregivers reporting higher versus lower levels of difficulty for every unit increase in self-efficacy. This model can be considered as an extension of the logistic regression model for binary response variables to variables with ordered categories. Inherent in this model is the assumption of proportional odds (which was upheld in this analysis based on approximate likelihood ratio tests (p>0.05). To control for potential confounding, we adjusted for the caregiver and patient characteristics related to caregiver self-efficacy which were also hypothesized to be related to HCTD. These variables included both caregiver characteristics (age, gender, education, health, and reported quality of relationship with patient), patient health-related quality of life (measured using the SF36³²), and the number of assisted HCTs. The number of assisted HCTs was included in the model to ensure the estimated coefficients reflected the relationship of each independent variable with HCTD, regardless of the number of HCTs being performed.

Table 2 describes patient and caregiver characteristics and the scope of caregiver assistance. An increasing scope of assistance was associated with incrementally greater numbers of chronic conditions, HCC risk score, number of bed bound days and number of nursing home days among care recipients, as well as decreased patient quality of life (SF36; see Table 2). There was a trend toward females receiving more assistance (HCT, IADL, and ADL assistance) and individuals with higher education receiving less assistance (HCT only). Similarly, caregiver scope of assistance was significantly and positively associated with the presence of other helpers, presence of a child (age <18) in the house, increased hours of caregiving, and caregiving-related strain.

Table 3 describes the characteristics of patients by categories of HCTD. Interestingly, we observed very little variation in patient health characteristics across caregiver HCTD summary scores (see Table 3). Only gender, number of bed bound days, and number of nursing home days were associated with increased HCTD at the significance level of p<0.05. Greater strain (CSI) and depressive symptoms (CESD) were observed with increasing caregiver HCTD. Caregivers’ self-efficacy, satisfaction with caregiving, and quality of relationship with the patient were inversely associated with level of HCTD. HCTD was associated with increased assistance with optional health care tasks and IADL tasks, but not with ADL tasks.

Table 4 presents the ordinal multivariate logistic regression model of caregiver self-efficacy on odds of reporting a higher versus a lower level of HCTD. For every one-point increase in self-efficacy, the odds of reporting a higher versus lower levels of HCTD decreased by 36%. A 1-year increase in caregiver age and one-point increase in the quality of the caregiver’s relationship were also associated with a decrease in the odds of reporting high versus low level of HCTD by 2% and 19% respectively. An increase in the number of health care tasks assisted with was associated with increased odds of reporting high versus low level of HCTD by 17%.

As hypothesized, caregiver self-efficacy was strongly associated with decreased HCTD, suggesting that low caregiver self-efficacy could be an important indicator for caregivers experiencing HCTD assisting patients with complex treatment plans. Consistent with previous studies, high HCTD was found to be more common among younger caregivers.^16,18 Researchers have hypothesized older adults consider illness to be a normal experience of aging and thus can more easily adapt to the situation.³⁸ Also of interest was the strong independent relationship between high caregiver-reported quality of relationship with the patient and low perceived HCTD. The effect of the caregiver’s relationship with the patient on outcomes for both the patient and caregiver has not been well studied to date and warrants further exploration.³⁹

In the bi-variate analyses, there was little association between patient socio-demographic characteristics and caregiver HCTD (only caring for a female patient was associated with greater caregiver HCTD). Although some patient health characteristics (bed bound days, nursing home days and mental health-related quality of life) were associated with caregiver HCTD, this relationship was not consistent across all measures of patient health (numbers of chronic conditions, physical health-related quality of life, and predicted health care utilization).

Collectively, these findings suggest that interventions aimed at increasing self-efficacy and reducing caregiver HCTD might lower strain and depression for caregivers. Physicians, nurses, and social workers may have a role to play in detecting family caregivers who are experiencing difficulty with specific HCTs and problem solving with patients and caregivers. Improving caregiver mental health through reduced difficulty with HCTs could also improve patient outcomes^40,41 in that patients with effective caregivers often show better adherence to treatment plans^42,43 and improved functioning.⁴⁴ However, it remains unclear how physicians can best support caregivers in the health care setting given the lack of available resources, knowledge of how to best support family caregivers, and the time constraints of an average visit.⁴⁰ A careful examination of a patient’s treatment plan and the associated HCTD experienced by both the patient and the caregiver may help the physician to reduce needless complexity and prioritize which health care tasks are most important. Potential interventions aimed at improving caregiver self-efficacy to perform health care related tasks could also lead to a decrease in HCTD; however more research is needed to determine this.