1. Depression, Anxiety, Hazardous Drinking, Burden, and Rewards in Family Caregivers of Patients with Chronic Liver Disease Lois Bolden, Ph. D., PMHCNS, BC Mona Newsome Wicks, Ph.D., RN University of Tennessee Health Science Center

2. Background Cost-containment efforts by the insurance industry Cost-containment efforts by the insurance industry Marked declines in hospital lengths of stay Marked declines in hospital lengths of stay Increased number of individuals who survive previously fatal illnesses Increased number of individuals who survive previously fatal illnesses Population living longer with chronic illnesses Population living longer with chronic illnesses

3. Background 90 million Americans live with chronic illnesses 90 million Americans live with chronic illnesses 3 million Americans diagnosed with chronic liver disease 3 million Americans diagnosed with chronic liver disease 10 th leading cause of death 10 th leading cause of death Patients with CLD manifest severe symptoms Patients with CLD manifest severe symptoms Patients frequently require the assistance of a caregiver Patients frequently require the assistance of a caregiver

4. Background Family caregiving can be stressful Family caregiving can be stressful Patient dependency and increasingly severe symptoms may contribute to caregiver physical and mental illness Patient dependency and increasingly severe symptoms may contribute to caregiver physical and mental illness Stress related to caregiving can lead to caregiver burden and depression Stress related to caregiving can lead to caregiver burden and depression Little research related to African Americans and caregiving Little research related to African Americans and caregiving Not all caregivers report burden, many caregivers report rewards associated with the role Not all caregivers report burden, many caregivers report rewards associated with the role

5. Conceptual Framework Pearlin’s Stress Process Model (SPM) facilitated the selection of the study variables and instruments and influenced interpretation of findings Pearlin’s Stress Process Model (SPM) facilitated the selection of the study variables and instruments and influenced interpretation of findings Four domains: the background and context of stress, stressors, mediators of stress, and outcomes or manifestations of stress Four domains: the background and context of stress, stressors, mediators of stress, and outcomes or manifestations of stress Attributes of the caregiver are major components of the background and context domain Attributes of the caregiver are major components of the background and context domain

6. Conceptual Framework (cont’d) Primary stressors-demands and needs of the care recipient and can lead to other stressors Primary stressors-demands and needs of the care recipient and can lead to other stressors Secondary stressors -role and intra-psychic strain that caregiving has on the caregiver’s ability to work and participate in outside activities Secondary stressors -role and intra-psychic strain that caregiving has on the caregiver’s ability to work and participate in outside activities Mediators- coping resources and social support Mediators- coping resources and social support Outcomes –the consequences that involve the physical and mental well-being of caregiver Outcomes –the consequences that involve the physical and mental well-being of caregiver

7. Background and Contextual Factors Caregiver Perceptions Caregiver Rewards Caregiver Characteristics Age Ethnicity Gender Marital status Socioeconomic Status (SES) Education Employment status Hours worked* Relation to patient Hours of caregiving* Caregiving duration Multiple care recipients* Primary and Secondary Stressors Caregiving Tasks* Caregiver Role Conflict* Decline in Caregiver Income ADL status Caregiver Stress Outcomes Depressive symptoms Anxiety Hazardous Drinking Subjective Burden Patient Characteristics Age* Gender* Length of illness* Co morbidities* Living Arrangements* Mediators Social Support Financial Support* Coping* Variables labeled with an asterisk were not tested in the prediction models. The dotted lines represent the relationships that were examined and the solid lines depict the relationships that were not examined within the current study.

8. Significance Family caregivers of individuals diagnosed with CLD are at risk for mental health problems (depressive and anxiety symptoms and hazardous drinking) Family caregivers of individuals diagnosed with CLD are at risk for mental health problems (depressive and anxiety symptoms and hazardous drinking) Limited published research has focused on describing caregivers assisting patients with CLD Limited published research has focused on describing caregivers assisting patients with CLD Identifying caregivers at risk for mental health problems can stimulate clinicians to provide resources to prevent negative health outcomes Identifying caregivers at risk for mental health problems can stimulate clinicians to provide resources to prevent negative health outcomes African Americans may experience caregiving differently African Americans may experience caregiving differently Identifying caregivers who have increased rewards can stimulate clinicians to provide support and encouragement to this group Identifying caregivers who have increased rewards can stimulate clinicians to provide support and encouragement to this group

9. Research Aims and Questions Aim 1. Describe depressive symptom levels, anxiety symptom levels, and the prevalence of hazardous drinking, subjective burden, and caregiver rewards in family caregivers of persons with CLD. Aim 1. Describe depressive symptom levels, anxiety symptom levels, and the prevalence of hazardous drinking, subjective burden, and caregiver rewards in family caregivers of persons with CLD. What are the depressive and anxiety symptom levels and prevalence of hazardous drinking, subjective burden, caregiver rewards reported by family caregivers of patients with CLD? What are the depressive and anxiety symptom levels and prevalence of hazardous drinking, subjective burden, caregiver rewards reported by family caregivers of patients with CLD?

10. Research Aims and Questions Aim 2. Compare the depressive symptom levels, anxiety symptom levels, subjective burden, and caregiver rewards reported by African American and Caucasian family caregivers of persons with CLD. Aim 2. Compare the depressive symptom levels, anxiety symptom levels, subjective burden, and caregiver rewards reported by African American and Caucasian family caregivers of persons with CLD. What are the levels of depressive symptoms, anxiety symptoms, subjective burden and rewards reported by African American and Caucasian family caregivers of patients with CLD? What are the levels of depressive symptoms, anxiety symptoms, subjective burden and rewards reported by African American and Caucasian family caregivers of patients with CLD?

11. Research Aims and Questions Aim 3. Explicate the predictors of subjective burden, caregiver rewards and mental health status (depressive symptoms, anxiety levels) of family caregivers of persons with CLD. Aim 3. Explicate the predictors of subjective burden, caregiver rewards and mental health status (depressive symptoms, anxiety levels) of family caregivers of persons with CLD. What are the predictors of subjective burden, caregiver reward and mental health (depressive symptoms, anxiety levels) of family caregivers of patients with CLD? What are the predictors of subjective burden, caregiver reward and mental health (depressive symptoms, anxiety levels) of family caregivers of patients with CLD?

12. Methodology Design This is a cross-sectional, descriptive, correlation study This is a cross-sectional, descriptive, correlation study Sample and Setting Convenience sample of 73 family caregivers Convenience sample of 73 family caregivers University-based hepatology practice University-based hepatology practice Tennessee, Mississippi, Missouri, and Arkansas Tennessee, Mississippi, Missouri, and Arkansas

13. Criteria The Child Pugh Score (CPS) class A, B, & C The Child Pugh Score (CPS) class A, B, & C Identified as the primary caregiver by the care recipient. Identified as the primary caregiver by the care recipient. Age 18 years or older on last birthday Age 18 years or older on last birthday Permanent residence in the U.S and able to speak and understand English Permanent residence in the U.S and able to speak and understand English Willingness to participate in the study and provide verbal and written consent Willingness to participate in the study and provide verbal and written consent

14. Instruments Family Caregiver Demographic Data Form Family Caregiver Demographic Data Form Center for Epidemiological Studies Depression Scale (CES-D) Center for Epidemiological Studies Depression Scale (CES-D) Hamilton Anxiety Scale (HAM-A) Hamilton Anxiety Scale (HAM-A) Alcohol Use Disorder Identification Test (AUDIT) Alcohol Use Disorder Identification Test (AUDIT) Burden Inventory (BI) Burden Inventory (BI) Picot Caregiver Reward Scale (PCRS) Picot Caregiver Reward Scale (PCRS)

15. Data Analysis Descriptive Statistics Descriptive Statistics Independent t-tests Independent t-tests Mann Whitney Tests Mann Whitney Tests Pearson Correlation Pearson Correlation Spearman Rho Correlation Spearman Rho Correlation Stepwise Multiple Regression Stepwise Multiple Regression

16. Caregiver Characteristics N = 73 Mean Age = 48.2 years Mean length of time caregiving = 6 years Mean Education = 12.4 years

17. Caregiver Characteristics

20. Care Recipient Characteristics

24. Question 1 What are the depressive and anxiety symptom levels and prevalence of hazardous drinking, subjective burden, caregiver rewards reported by family caregivers of patients with CLD? What are the depressive and anxiety symptom levels and prevalence of hazardous drinking, subjective burden, caregiver rewards reported by family caregivers of patients with CLD?

25. Findings Family Caregiver Scores on Mental Health, Burden, and Reward Instruments InstrumentSample Mdn + IQR InstrumentSample M + SD CES-D 17.0 + 23.0 BI 21.5 + 11.9 HAM-A 10 + 17.0 PCRS 52.5 + 20.2 AUDIT 00 + 2

26. Question 2 What are the depressive and anxiety symptom levels, subjective burden, and rewards reported by African American and Caucasian family caregivers of patients with CLD? of patients with CLD?

27. Findings Depressive Symptoms ( Mdn ± IQR) Score slightly higher for Caucasian (17.5 ± 27.5) compared to African American caregivers (17.0 ± 18.0) Score slightly higher for Caucasian (17.5 ± 27.5) compared to African American caregivers (17.0 ± 18.0) Not statistically different (z -.342, p =.73) Not statistically different (z -.342, p =.73)

28. Findings Anxiety Symptom Levels (Mdn+IQR) African American caregivers (12.5 ± 19.0) had higher symptom levels than Caucasians(8.0 ±17.0) African American caregivers (12.5 ± 19.0) had higher symptom levels than Caucasians(8.0 ±17.0) Not statistically different (z =-.405, p=.68) Not statistically different (z =-.405, p=.68)

29. Findings Subjective Burden (M+SD) Higher for Caucasian (23.00 ±12.35) compared to African American caregivers (19.95 ±10.67) Higher for Caucasian (23.00 ±12.35) compared to African American caregivers (19.95 ±10.67) Differences were not statistically significant (t = -9.26; p=.358) Differences were not statistically significant (t = -9.26; p=.358)

30. Findings Caregiver Rewards (M+SD) African Americans had higher mean score (61.5 ± 18.07) than Caucasians (47.93 ± 20.24) African Americans had higher mean score (61.5 ± 18.07) than Caucasians (47.93 ± 20.24) Statistically significant (t = 2.68, p =.009) Statistically significant (t = 2.68, p =.009)

31. Question 3 What are the predictors of subjective burden and mental health of family caregivers of patients with CLD?

32. Findings Depressive Symptoms Worried about children was correlated with depressive symptoms (r =-.27; p<.05) Worried about children was correlated with depressive symptoms (r =-.27; p<.05) Worried about children (B=.08, p =.05) was a predictor of depressive symptoms; accounted for 5% of the variance in adjusted depressive symptoms Worried about children (B=.08, p =.05) was a predictor of depressive symptoms; accounted for 5% of the variance in adjusted depressive symptoms Caregivers who were worried about their children had higher depressive symptoms Caregivers who were worried about their children had higher depressive symptoms

33. Findings Anxiety Symptom Levels Support was negatively correlated with level of anxiety (r =-.26; p<.05) Support was negatively correlated with level of anxiety (r =-.26; p<.05) None of the independent variables (caregiver support, caregiver ethnicity, caregiver gender, or assistance with ADL) were statistically significant predictors None of the independent variables (caregiver support, caregiver ethnicity, caregiver gender, or assistance with ADL) were statistically significant predictors

34. Findings Subjective Burden Years of care (r=.40; p<.01), income decrease (r=.40; p<.00), worried about children (r =.42; p<.00) correlated with subjective burden Years of care (r=.40; p<.01), income decrease (r=.40; p<.00), worried about children (r =.42; p<.00) correlated with subjective burden Income decrease (B=.353, p=.003) and worried about children (B=.349, p=.003) remained in the final model as predictors of subjective burden accounting for 25% of adjusted variance Income decrease (B=.353, p=.003) and worried about children (B=.349, p=.003) remained in the final model as predictors of subjective burden accounting for 25% of adjusted variance Caregivers who reported a decrease in income and worried about their children reported greater subjective burden Caregivers who reported a decrease in income and worried about their children reported greater subjective burden

35. Findings Caregiver Rewards Employment status negatively correlated (r=-32; p<.00,) marital status (r=.27; p<.05) and ethnicity (r=.36; p<.01) was positively correlated with caregiver rewards Employment status negatively correlated (r=-32; p<.00,) marital status (r=.27; p<.05) and ethnicity (r=.36; p<.01) was positively correlated with caregiver rewards Caregiver ethnicity (B=.37, p=.001) and employment status (B=-.33, p=.003), remained in the final regression model accounting for 18% of the adjusted variance Caregiver ethnicity (B=.37, p=.001) and employment status (B=-.33, p=.003), remained in the final regression model accounting for 18% of the adjusted variance Being African American and unemployed was predictive of increased caregiver rewards Being African American and unemployed was predictive of increased caregiver rewards

36. Discussion Predominantly female sample Predominantly female sample Caregivers were younger than typical caregivers Caregivers were younger than typical caregivers Like other caregiving research studies most caregivers were employed full-time Like other caregiving research studies most caregivers were employed full-time Similar to previous research, most (53%) caregivers were married Similar to previous research, most (53%) caregivers were married Many caregivers were spouses (45%) and children (21%) Many caregivers were spouses (45%) and children (21%) Ethnic minorities represented 30% of the sample Ethnic minorities represented 30% of the sample

37. Discussion Depressive Symptoms Depressive symptom scores exceeded the cut-off of 16 (mild distress category) Depressive symptom scores exceeded the cut-off of 16 (mild distress category) African Americans had fewer depressive symptoms but differences were not statistically significant African Americans had fewer depressive symptoms but differences were not statistically significant Results consistent with literature Results consistent with literature

38. Discussion Anxiety Symptom Levels Researchers have investigated the link between caregiving experience and anxiety with inconsistent results Researchers have investigated the link between caregiving experience and anxiety with inconsistent results Caregivers in the current study reported low levels of anxiety Caregivers in the current study reported low levels of anxiety 78% of the caregivers with mild to severe anxiety were female 78% of the caregivers with mild to severe anxiety were female

39. Discussion Hazardous Drinking No hazardous drinking in either African American or Caucasian caregivers No hazardous drinking in either African American or Caucasian caregivers Few researchers have investigated alcohol use in family caregivers Few researchers have investigated alcohol use in family caregivers Individuals with significant drinking problems may under report alcohol consumption Individuals with significant drinking problems may under report alcohol consumption

40. Discussion Subjective Burden Caregivers with mild to severe subjective burden scores were females (83%), middle aged (51.27 + 9.92 years), employed full- time (42%), and providing assistance with ADL (46%) Caregivers with mild to severe subjective burden scores were females (83%), middle aged (51.27 + 9.92 years), employed full- time (42%), and providing assistance with ADL (46%)

41. Discussion Caregiver Rewards Higher scores indicate higher caregiver rewards Higher scores indicate higher caregiver rewards Mean educational level was 12.4 + 2.6 years compared to 13.42 + 2.53 in a previous research study Mean educational level was 12.4 + 2.6 years compared to 13.42 + 2.53 in a previous research study Education inversely related to caregiver rewards Education inversely related to caregiver rewards More educated caregivers reported to perceive fewer rewards More educated caregivers reported to perceive fewer rewards

42. Discussion Caregiver Rewards in African Americans Caregiver Rewards in African Americans Reported significantly greater rewards when compared to Caucasians Reported significantly greater rewards when compared to Caucasians Research indicates a significant positive association between spirituality and caregiver rewards in AA caregivers Research indicates a significant positive association between spirituality and caregiver rewards in AA caregivers

43. Discussion Subjective Burden African American caregivers experienced little or no subjective burden African American caregivers experienced little or no subjective burden Caucasians had mild to moderate subjective burden Caucasians had mild to moderate subjective burden Results were not significantly different Results were not significantly different Results are consistent with previous research Results are consistent with previous research Differences may be explained by cultural influences Differences may be explained by cultural influences

44. Discussion Predictors of Mental Health and Burden Consistent predictors of depressive symptoms and subjective burden were worried about children and income decrease Consistent predictors of depressive symptoms and subjective burden were worried about children and income decrease Caregivers who were worried about their children had higher levels of depressive symptoms Caregivers who were worried about their children had higher levels of depressive symptoms Parental in addition to caregiving responsibilities cause further challenges that could explain findings Parental in addition to caregiving responsibilities cause further challenges that could explain findings

45. Discussion Predictors of Rewards Caregiver ethnicity and employment status predicted caregiver rewards Caregiver ethnicity and employment status predicted caregiver rewards Employed African Americans experienced less caregiver rewards Employed African Americans experienced less caregiver rewards Caregivers who are employed and caring for an ill relative may suffer from difficulty balancing the responsibilities of work and caregiving Caregivers who are employed and caring for an ill relative may suffer from difficulty balancing the responsibilities of work and caregiving

46. Limitations Sampling strategies- convenience sampling- not representative Sampling strategies- convenience sampling- not representative Response rate-may reflect a sub sample Response rate-may reflect a sub sample Instrumentation - instruments were self- assessment tools which may not reflect the true experience of the caregivers Instrumentation - instruments were self- assessment tools which may not reflect the true experience of the caregivers

47. Strengths No published studies examining the experiences of family caregivers of persons with CLD despite the fact that some liver diseases are chronic and have debilitating, life-threatening symptoms No published studies examining the experiences of family caregivers of persons with CLD despite the fact that some liver diseases are chronic and have debilitating, life-threatening symptoms Few studies investigate anxiety and alcohol use in family caregiver populations Few studies investigate anxiety and alcohol use in family caregiver populations Few caregiver studies have examined the relationship between income and mental health symptoms Few caregiver studies have examined the relationship between income and mental health symptoms

48. Practice and Policy Implications Cultural distinctions are likely to affect the caregiving experience. It is important that practitioners are aware of these differences and their potential effects. Cultural distinctions are likely to affect the caregiving experience. It is important that practitioners are aware of these differences and their potential effects. Clinicians should be aware that caregivers can experience rewards and burden in the same context. Clinicians should be aware that caregivers can experience rewards and burden in the same context. Clinicians should assess for both burden and rewards as well as explore mental health outcomes. Clinicians should assess for both burden and rewards as well as explore mental health outcomes.

49. Practice and Policy Implications Programs that offer incentives to caregivers and their families to offset the income decrease caused by the caregiving experience should be implemented. Programs that offer incentives to caregivers and their families to offset the income decrease caused by the caregiving experience should be implemented.

50. Implications for Future Research Published studies do not typically examine caregiving experiences in the context of child rearing responsibilities. Published studies do not typically examine caregiving experiences in the context of child rearing responsibilities. Specific worries related to children were not the focus of this study and deserve further examination. Specific worries related to children were not the focus of this study and deserve further examination.

51. Conclusion Caregiving is a complex phenomenon. Researchers have not investigated caregivers assisting a relative diagnosed with liver disease. Caregiving is a complex phenomenon. Researchers have not investigated caregivers assisting a relative diagnosed with liver disease. Findings emphasize the importance of caregivers’ mental health as more than half of study caregivers reported clinically important levels of depressive symptoms. Findings emphasize the importance of caregivers’ mental health as more than half of study caregivers reported clinically important levels of depressive symptoms. Predictors of depressive symptoms, subjective burden, and caregiver rewards were worried about children, income decrease, ethnicity/race, and employment. Predictors of depressive symptoms, subjective burden, and caregiver rewards were worried about children, income decrease, ethnicity/race, and employment.

52. Questions This research was supported in part by the Substance Abuse and Mental Health Services Administration’s Minority Fellowship Program at the American Nurses Association