Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Abstract

Introduction

Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers’ pandemic-related changes and experiences – namely those related to their health, healthcare access, and well-being – were associated with their caregiving burden.

Methods

Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden.

Results

Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes.

Discussion

Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes.

Conclusion

Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

1. Introduction

Despite epilepsy being a well-recognized neurological condition, few studies are focused on the health and quality of life (QOL) of family and friends providing care for people with epilepsy [1], [2]. The total impact of epilepsy is more commonly discussed in terms of the patient and rarely accounts for the impact on families, caregivers, or the communities in which persons with epilepsy live [3]. The burdens of caregiving on one’s support system include the chronicity of epilepsy, which often extends caregiving duties to family members, friends, and at times, persons from the public, who may be called upon to care for an individual experiencing a seizure [4]. Caring for someone with a chronic condition such as epilepsy may uniquely burden caregivers due to the complexity and pervasive nature of symptoms [2], [3]. Caregiver burden may be described as the level of multifaceted strain perceived by the caregiver as a result of providing care for a family member or loved one over time [5], often in an informal manner [6]. The responsibilities of caring for a person with epilepsy may include managing stress related to the stigma associated with an epilepsy diagnosis, particularly if the care recipient is a family member; seizure unpredictability [7] (i.e., seizure burden) and associated fear of injury or death [8]; caring for symptoms of epilepsy and psychological comorbidity [2]; economic burden, and the clinical impacts on caregivers themselves (e.g., depression, anxiety, insomnia) [9]. While the relationship between caregiving and health is generally associated with stress [10], it is crucial to understand other factors that contribute to the overall burden experienced by epilepsy caregivers and how their well-being is affected over the course of their caregiving role [10], [11]. The ongoing COVID-19 pandemic [12] has posed and continues to pose, unprecedented challenges to caregivers of all types of conditions [13], including epilepsy. A deeper understanding of the current factors influencing the health, well-being, and QOL of epilepsy caregivers is necessary to provide valuable insights into these circumstances, and ultimately to address high levels of caregiver burden in both pandemic and non-pandemic settings.

Most studies of epilepsy caregiver burden examine adults caring for children and adolescents with epilepsy, subsequently limiting our understanding of how burden may present in caregivers of adults with epilepsy. Indeed, the current literature on these caregivers demonstrates the burden to present differently when compared to caregivers of children or adolescents with epilepsy [9], [14], [15]. While one study found that caregivers of children with epilepsy were significantly more likely to report stress-related comorbidities compared to caregivers of adults with epilepsy [9], different challenges and demands can arise for caregivers of adults with epilepsy, such as increased burden and stigma [14], [16]. Furthermore, caregivers of adults with epilepsy may be experiencing more of their own chronic health conditions (e.g., aging parents) and adults with epilepsy often have more variable levels of social support and caregiver networks than children since caregivers may include not only parents but romantic partners and friends [16]. These caregivers may have their own interactions and relationships, which in turn impact the family functioning. The unpredictability of seizures is one stressor that epilepsy caregivers of children and adults both share [8], [17]. Nonetheless, existing literature shows that caregivers of adults with epilepsy often face significant impacts that can negatively influence their health and well-being.

Recent studies on how the COVID-19 pandemic has impacted caregivers have found that caregivers regularly reported significant concern about being infected or their care recipient becoming infected, routine medical appointments being canceled or postponed, and an increased fear of seeking medical attention due to exposure to the virus [13], [18]. Additionally, communication and coordination difficulties with healthcare providers proved to be a common theme reported among caregivers during the pandemic [13], [19]. In a German study of informal caregivers [20], it was found that across indicators of care involvement, many reported that their care situation worsened during the COVID-19 pandemic. These changes and restrictions resulting from the pandemic may generate additional burdens among caregivers.

The goal of this study was to provide a window into the impact of COVID-19 on caregivers of adults with epilepsy. Our objective was to evaluate whether caregivers’ pandemic-related changes and experiences – namely those related to their health, healthcare access, and well-being – were associated with their caregiving burden. We hypothesized that caregivers who reported negative impacts of COVID-19 would also report clinically significant levels of burden more often than their caregiving peers who had not experienced negative changes due to the pandemic.

2. Methods

2.1. Study design

This cross-sectional, anonymous survey study used Qualtrics XM©, a national survey company, to collect data from a cohort of caregivers of adults with epilepsy. The study procedures were reviewed and determined to be non-human subjects research by the University of Utah Institutional Review Board.

2.1.1. Participants

Participants were recruited using Qualtrics Panel, an online survey platform that maintains a database of millions of U.S. residents who have previously volunteered to participate in survey-based studies. Panel members were invited to participate in the survey through an e-mail invitation, which included a link that redirected them to the study’s page. The landing page included information about the study’s design, purpose, risks, and benefits. Consent to participate was provided by checking a box indicating consent before proceeding with the survey. Qualtrics prioritized recruiting respondents from the general U.S. population whose demographics aligned with the survey criteria based on a screener provided prior to the survey. Respondents were at least 18 years old and had to be a caregiver of an adult (age 18 years or older) with epilepsy.

2.1.2. Survey administration

The survey was administered online from October to December 2020. Response requirements and validation features were used to alert respondents about questions they may have missed. After completing the survey, participants were compensated in the form and amount agreed on when they joined the panel. Deidentified survey data were provided to the research team.

2.2. Measures

The survey inquired about caregiver burden, COVID-19 experiences, physical and mental health, and sociodemographic characteristics.

2.2.1. Zarit Caregiver Burden Interview (ZBI-12)

This is a valid and reliable 12-item self-report scale that assesses the subjective burden experienced by informal caregivers [21]. Due to a lack of epilepsy-specific caregiver burden questionnaires, the Zarit caregiver burden inventory was used to measure burden among epilepsy caregivers, consistent with previous studies [16], [22]. Items cover the most commonly mentioned problems by caregivers including the caregiver’s health, psychological well-being, finances, social life, and the relationship between the caregiver and the care recipient [21], [23]. Scores range from 0 to 48; higher scores indicate a higher burden, and a score >16 suggests a clinically significant caregiver burden [23], [24], [25]. We calculated mean burden scores and categorized caregivers as either having clinically significant burdens or non-clinically significant burden. One of the exposures of interest is a sense of control, which also is one of the items in the Zarit-12. Therefore, we conducted a sensitivity analysis for the change in sense of control exposure in which we removed this item from the burden score calculation and adjusted the cut point for the clinically significant burden to >15. The Cronbach’s α for the Zarit-12 was .93 with all items and .91 for the 11-item version of the scale, which both indicate high internal consistency.

2.2.2. COVID-19 Experiences

Based on findings identifying 21 unique experiences from studies conducted during the early months of the COVID-19 pandemic [26], [27], we created a measure that asks respondents to indicate if they have been affected by these areas of interest, and to what extent. Caregivers were asked if they noticed an increase, decrease, or no change (see Appendix A for the entire measure). For this study, we focused on items that may be expected to relate to burdens such as anger, anxiety, and stress [28], [29], [30] as well as healthcare utilization [31], social isolation [32], sense of control over their life [33], [34], and substance use [35], [36], [37]. For each item, we created a binary variable to indicate caregivers who experienced a negative change versus a neutral or positive change. For example, caregivers who reported an increase in anger were classified as having a negative change, whereas no change in health care utilization was classified as a positive outcome.

2.2.3. The Veterans RAND 12 (VR-12)

The Veterans RAND 12 (VR-12) is a patient-reported instrument comprised of 12 items used to derive physical and emotional component scores [38]. For this study, we utilized the mental (MCS) and physical component scores (PCS) to assess cognitive and physical functioning, limitations, pain, energy, mental health, social functioning, and overall health [39]. Physical component scores and MCS scores are derived using an algorithm that is referenced to a metric centered at 50.0 using the 2000–2002 US Medical Expenditure Panel Survey population [38]. To obtain a broad idea of what caregivers’ health statuses were at the time of survey completion, we utilized these component scores to better interpret the mental and physical health among caregivers [38], [40], [41].

2.2.4. Diagnosed health conditions

Diagnosed health conditions were measured by asking respondents to identify all conditions they have been diagnosed with by their healthcare provider. These conditions (See Appendix B) were chosen based on the most commonly diagnosed conditions among both epilepsy patients and caregivers [42], [43]. To analyze the burden associated with health conditions, we calculated the mean number of conditions caregivers reported. Non-responses were assumed to indicate that caregivers were not living with the conditions at the time of survey completion. In addition to chronic health conditions, caregivers were asked to indicate whether they had ever been diagnosed with COVID-19.

2.2.5. Sociodemographic characteristics

Sociodemographic characteristics were obtained from the survey to create a better understanding of the cohort. The information gathered from this survey included age, gender, education, and financial status. Categories were created for these demographics based on the general characteristics of the study population (see Table 1 ). Age was collected and measured in years and was then grouped into categories relevant to the age distribution of participants. Education levels were combined to classify a participant as having a high school degree or lower or having some college education or a college degree. To measure financial changes during COVID-19, participants were asked to indicate their household’s financial situation (See Table 1). The six original options were classified in one of the following three ways to gauge financial difficulties: having enough money to pay the bills, having less difficulty paying the bills, and having difficulty paying the bills.

Table 1.

Characteristics of Caregivers of Adults with Epilepsy.

(N = 261)	Mean	SD
Mean age	33.1	12.6
Age Groups	%	n
18-29	49.8	130
30-49	36.8	96
50+	13.4	35
Gender	%	n
Woman*	72.0	188
Man	28.0	73
Race: Select all that apply	%	n
White	72.4	189
Black	17.6	46
American Indian or Alaska Native	4.6	12
Asian	3.4	9
Pacific Islander	.38	1
Other	6.9	18
Hispanic, Latino/a, or Spanish origin	%	n
No	79.3	207
Yes	20.7	54
Mexican, Mexican American, Chicano/a	46.3	25
Puerto Rican	18.5	10
Cuban	7.4	4
Another Hispanic, Latino/a, or Spanish origin	26.0	14
Cuban, Another Hispanic, Latino/a, or Spanish origin	1.9	1
Education	%	n
High school graduate or less	34.1	89
Some college or college graduate	65.9	172
Household financial situation	%	n
After paying the bills, you still have enough money for special things that you want	17.2	45
You have enough money to pay the bills, but little spare money to buy extra or special things	36.4	95
You have money to pay the bills, but only because you have to cut back on things	20.3	53
You are having difficulty paying the bills, no matter what you do	24.1	63
Decline to answer/Don’t know	1.9	5
Health components	Mean	SD
Mean # reported comorbidities	1.6	1.5
VR-12 PCS	44.0	9.3
VR-12 MCS	37.0	11.9
COVID-19 Diagnoses	%	n
Respondent diagnosed	9.6	25

*One respondent identified as transgender. For ease of grouping and following aims of this study, this participant was included in the “Female” category.

2.3. Data analyses

First, we calculated means and proportions to describe the overall sample of caregivers and the characteristics of caregivers with and without clinically significant burden levels. We used t-tests to compare continuous measures and chi-square tests to compare categorical measures for caregivers with and without clinically significant burden. We used a generalized linear model with a binomial family and logit link for regression analyses. We ran both crude models and models adjusted for age, sex, education, and financial status. An alpha value of 0.05 was used to indicate statistical significance. Descriptive analyses were conducted in SPSS and inferential analyses were conducted within R Studio/SAS.

3. Results

3.1. Background and demographic data

A total of 261 caregivers of adults with epilepsy completed the survey. The sample was relatively young (mean 33 years of age) with the majority being women, white, and non-Hispanic. However, nearly 21% were Hispanic, 18% were Black, and 5% were Native American/American Indian (see Table 1). Over 65% had some college or more education, and 24% reported having difficulty paying the bills no matter what they do, suggesting serious financial difficulties.

3.2. General health status

At the time of survey completion, the average PCS and MCS among caregivers of adults with epilepsy were 43.9 (SD = 9.3) and 36.7 (SD = 11.9), respectively. This indicates that physical and mental health reported by caregivers was poorer than the general population, with physical health reported as slightly better than mental health overall.

3.3. Comorbidities

Full details of self-reported health conditions among caregivers can be found in Fig. 1 . In general, the prevalence of chronic health conditions was relatively low; however, about one-third (35%) of caregivers reported having had a diagnosis of migraines/headaches, and a quarter (26%) reported having high blood pressure. About 10% of caregivers had been diagnosed with COVID-19.

Fig. 1.

Reported Diagnoses Among Epilepsy Caregivers.

3.4. Caregiver burden

The average score for caregiver burden among respondents was 18.7 with a standard deviation of 10.2. More than half of the caregivers in our sample (57.9%, n = 151) met the criteria for clinically significant burden (see Table 2 ).

Table 2.

Health Status and COVID-19 Impacts among Epilepsy Caregivers with and without Clinically Significant Burden.

	Clinically significant Zarit Burden1 N = 151	No Clinically Significant Zarit Burden 1 N = 110
Mental Health
Increase in Anger, %	47.0	30.9
Increase Anxiety, %	72.8	54.5
Increase Stress, %	68.2	58.2
Healthcare Utilization
Increase or decrease in healthcare utilization, %	62.3	43.6
Increase or decrease in mental/behavioral healthcare utilization, %	58.9	35.5
VR-12 Composite Scores
PCS122, mean (SD)	42.3 (9.0)	46.3 (9.2)
MCS122, mean (SD)	44.0 (10.7)	40.4 (12.4)
Personal and Social Experiences
Decrease in sense of control over life, %	53.0	32.7
Increase in sense of social isolation, %	62.9	37.1
Substance Use
Increase in alcohol use, %	33.8	24.5
Increase in smoking, %	35.1	27.3

¹Clinically significant burden was defined as a score >16 on the Zarit burden 12-item version. No clinically significant burden was defined as a score ≤16 on the Zarit burden 12-item version.

²PCS12: Physical composite score, MCS12: Mental composite score.

3.5. COVID-19 experiences

Fig. 2 shows the percent of caregivers in the sample experienced change in each COVID-19 stressor. In crude models, caregivers who reported increased anger increased anxiety, a decreased sense of control, or a change in their use of physical or mental healthcare during COVID-19 had about twice the odds of having clinically significant caregiver burdens as caregivers who did not report these changes (OR = 1.99, OR = 2.32, OR = 2.16, OR = 2.18, and OR = 2.81 respectively; Table 3 ). In adjusted models, these changes remained statistically significant, and point estimates indicated slightly stronger associations (increased anger OR = 2.14, p = 0.006; increased anxiety OR = 2.44, p = 0.001; a decreased sense of control OR = 2.16, p = 0.004; change in physical healthcare use OR = 2.85, p = 0.002; change in mental healthcare use OR = 2.81, p < 0.001). In the sensitivity analysis for a decreased sense of control, in which we excluded the item about control from the burden score, the association was attenuated slightly but remained statistically significant (adjusted OR = 2.16, 95% CI, p = 0.004). There were no associations between increased social isolation, or increased stress, with caregiver burden in either crude or adjusted models.

Fig. 2.

Self-Reported Impacts of the COVID-19 Pandemic Among Epilepsy Caregivers.

Table 3.

Association between COVID-19 Changes and Clinically Significant Caregiver Burden among Caregivers of Adults with Epilepsy (n = 256).

Experience	Change during COVID-19	Crude Model		Adjusted Model
		OR (95%CI)	p-value	OR (95%CI)	p-value
Anger	Increased	1.99 (1.19–3.37)	0.01	2.14 (1.26–3.70)	0.006
	No change or decreased	Ref		Ref
Anxiety	Increased	2.22 (1.31–3.77)	.003	2.44 (1.41–4.24)	.001
	No change or decreased	Ref		Ref
Stress	Increased	1.52 (0.90–2.55)	0.12	1.56 (0.91–2.68)	0.10
	No change or decreased	Ref		Ref
Healthcare utilization	Increased or decreased	2.18 (1.32–3.64)	0.003	2.33 (1.38–3.97)	0.002
	No change	Ref		Ref
Mental/ behavioral healthcare utilization	Increased or decreased	2.81 (1.68–4.73)	<0.001	2.81 (1.67–4.79)	<0.001
	No change	Ref		Ref
Social isolation	Increased	1.56 (0.94–2.58)	0.09	1.57 (0.94–2.62)	0.09
	No change or decreased	Ref		Ref
Sense of control	Decreased	2.16 (1.30–3.64)	0.003	2.16 (1.28–3.69)	0.004
	No change or increased	Ref		Ref
Alcohol use	Increased	1.55 (0.90–2.71)	0.122	1.53 (0.87–2.71)	0.141
	No change or decreased	Ref		Ref
Smoking	Increased	1.45 (0.84–2.51)	0.183	1.53 (0.88–2.70)	0.133
	No change or decreased	Ref		Ref

Regression models are generalized linear models with a binomial family and logit link. Adjusted models include age, sex, education, and financial status.

Ref: indicates reference group in the model.

In regression models, respondents who indicated that they either do not know or preferred to not say their financial status were excluded as this item was analyzed as a covariate (n = 5).

4. Discussion

The current study offered an unprecedented examination of the relationship between pandemic-related outcomes and caregiver burden among caregivers of adults with epilepsy. Extant literature on caregiver experiences of adults with epilepsy, particularly caregiver burden, is scarce; subsequently limiting our knowledge of the experiences of this population [10], [15]. Thus, findings illuminate the unique ways in which burden may present among caregivers of adults with epilepsy. The sample of the current study was relatively large in comparison to existing studies on caregivers of adults with epilepsy, illustrating a noted strength of the present investigation. Additionally, the current study measured specific impacts of the pandemic, capturing the experiences of caregivers during a pivotal moment in history. Thus, targeted examination of pandemic-related outcomes and caregiver burden better discern how distress manifested for this population during this time.

This study presents evidence that caregivers of adults with epilepsy experienced the COVID-19 pandemic in a way that influenced their well-being and burden. We found that four specific experiences during the pandemic – more anger, more anxiety, less sense of control, and changes in the amount of healthcare – were strongly associated with clinically significant levels of caregiver burden. Our findings expand on the current literature that demonstrates the link between caregiver burden and psychological distress (e.g., anxiety- and depressive symptoms) of those who care for adults with epilepsy [44] while attuning to specific pandemic-related outcomes, such as decreased sense of control of one’s life. The COVID-19 pandemic has been described as a collective trauma, a mass-scale disruption to safety, and a sense of control that impacts the mental health and well-being of individuals and communities [45]. Contextualizing our findings in the time period that data was collected illuminates several pandemic-related milestones that occurred in the U.S. which may have exacerbated feelings of powerlessness and other forms of psychological distress, such as increased food insecurity, rapid increase in COVID-19 death tolls (an increase of approximately 100,000 deaths between October and December 2020), and the first issuances of Emergency Use Authorizations of two COVID-19 vaccines that were limited in supply [46]. Participants in our sample also indicated substantial financial distress during the pandemic, which may further reflect the financial difficulties experienced by the collective during this time. Ultimately, our study demonstrates the link between mass-level events, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. The findings among this sample of informal caregivers are consistent with studies demonstrating the negative impact of caring for patients during the COVID-19 pandemic on mental health and the effect of formal healthcare providers [47], [48], [49].

In addition to psychological distress, elevated levels of burden have been associated with negative health and quality of life outcomes for epilepsy caregivers [2], [50], [51], [52]. Our study found that the perceived burden was notably high during the pandemic and was related to pandemic-related changes. Burden in the caregiving relationship also appears to be a dyadic experience, with recent findings illustrating mutually burdensome aspects for caregivers and adults with epilepsy, such as reliance on the caregiver, the assumed responsibility of the caregiver on the adult with epilepsy, setting and maintaining boundaries, and protecting one another through caregiver supervision or patient concealment of symptoms [53]. Therefore, maintaining low levels of burden not only holds health and relational implications for both caregiver and recipient but may also help to enable people living with epilepsy to remain in the community. Our findings contribute to the sparse literature on caregivers of adults with epilepsy and literature on the impacts of COVID-19 on informal caregivers. Consistent with other caregiving research, we found COVID-19 increased caregiver distress and burden [13], [18], [19], [20] and specifically for caregivers of adults with epilepsy. Because epilepsy can affect both adults with epilepsy and their informal caregivers [8], it is crucial to understand how caring for individuals with epilepsy can influence caregivers, and how these influences differ compared to caregivers of children or adolescents with epilepsy. By understanding how the burden manifests differently among caregivers of children with epilepsy versus adults, clinicians can provide information and resources to both the caregivers and patients with the goal of reducing cumulative burden. These results suggest that interventions could be developed to reduce caregiver burden, which in turn could improve outcomes for both adults with epilepsy and their caregivers. One potential approach could include testing an existing intervention among caregivers of adults with epilepsy, such as the Building Better Caregivers (BBC) [54] program, which offers training on how caregivers can provide better care, and how they can effectively manage their own emotions, stress, and physical health.

4.1. Limitations

One study limitation was the recruitment through the Qualtrics Panel, which yielded a sample that was predominately white, young, educated women with relatively high financial security. This may be an artifact of the types of people that Qualtrics Panels appeal to and from which Qualtrics Panels recruit. As such, our findings may have limited generalizability to diverse caregiving and care recipient communities such as immigrant communities, communities of color, rural or remote communities, and lower-educated communities. This study also was cross-sectional and so we do not know what caregiver’s burden levels were before the pandemic, which could have moderated the impact of the pandemic itself. This limitation highlights the need for routine data collection among a variety of types of caregivers so that the impacts of large-scale events and public health crises can be fully evaluated. Surveys were conducted anonymously so we do not know whether multiple caregivers responded for the same care recipient. Finally, the survey did not include all aspects of caregiving or of the care recipient’s epilepsy or context that might impact the burden, including the relationship between the caregiver and care recipient, the amount of time the caregiver provided care, the type of epilepsy the care recipient had, or whether the caregiver and care recipient lived in a rural area. These areas and their potential impact on the experience of caregiver burden should be explored in future studies.

5. Conclusion

COVID-19 had negative impacts on caregivers of adults with epilepsy: caregivers experienced changes in a variety of areas, and several of these – anger, anxiety, sense of control, and changes in healthcare use – were associated with clinically significant caregiver burden. It is unclear whether these caregivers will need additional support to return to pre-pandemic emotional states; however, given the substantial levels of clinically significant burden, these caregivers likely would benefit from interventions to reduce this burden. These data suggest that public health efforts to support caregivers in general and in future pandemics or public health emergencies, in particular, are needed in order to maintain their health and well-being and that of the people for whom they provide care.

Declaration of Competing Interest

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: None.

Appendix A.

COVID-19 Experiences Measure: Completed by Respondent (Caregiver)

Please indicate whether you have been affected by any of the following as a result of COVID-19.	Decreased	No Change	Increased	Not Applicable
Ability to access mental/behavioral health care	□	□	□	□
Ability to access physical health care	□	□	□	□
Alcohol consumption	□	□	□	□
Anger	□	□	□	□
Anxiety	□	□	□	□
Exercise	□	□	□	□
Faith in your belief system (e.g., Christianity, spirituality)	□	□	□	□
Fear of having a seizure (if applicable)	□	□	□	□
Fear of care recipient having a seizure (if applicable)	□	□	□	□
Fear of seeking healthcare (physical or mental/behavioral) when you needed it	□	□	□	□
Hobbies	□	□	□	□
Meditation	□	□	□	□
Refilling prescription medications	□	□	□	□
Sense of control over your life	□	□	□	□
Sense of social isolation	□	□	□	□
Smoking	□	□	□	□
Stress	□	□	□	□
Symptoms of pre-existing or current health conditions	□	□	□	□
Time spent outside	□	□	□	□
Use of healthcare	□	□	□	□
Use of mental/behavioral health care	□	□	□	□

Appendix B.

Measure for Reporting Diagnoses: Completed by Respondent (Caregiver)

Identify all conditions you have been diagnosed with by your healthcare provider.
□Stroke/transient ischemic attack	□Diabetes
□Migraines/headache	□Cancer
□Traumatic brain injury (TBI)	□Chronic pain
□Nerve conditions (e.g., Multiple sclerosis, myasthenia gravis, Guillain-Barre syndrome, demyelinating polyneuropathy)	□Depression
□Gastrointestinal conditions (e.g., irritable bowel disease, ulcerative colitis, Crohn's disease)	□Anxiety
□Heart conditions	□Post-traumatic stress disorder (PTSD)
□High blood pressure	□Insomnia
□Frequent lung issues (e.g., asthma, bronchitis, pneumonia)	□Sleep apnea