Caregiving Impact on Depressive Symptoms for Family Caregivers of Terminally Ill Cancer Patients in Taiwan Siew Tzuh Tang, RN, DNSc Associate Professor, School of Nursing Chang Gung University, Taiwan 1
Family Caregivers in End-of-Life Care The trend toward shortened hospital stays and outpatient or home care implies the burden of caring for chronic ill patients (including terminally ill patients) is increasingly falling on their families. Family are partners in health care. 2
Family Caregivers in End-of-Life Care Family caregiving is particularly prevailing in Chinese cultures for terminally ill patients. Confucian cultures place great emphasis on filial piety and familism. Children should take care of parents when they are aged, sick, or even dying in return of parents efforts in bringing them up. 3
Family Caregivers in End-of-Life Care Preferences of dying at home (Tang, 2000) Cultural meaning of dying at home for Chinese/Taiwanese terminally ill patients. Death at home does not come without significant challenges and potential consequences for families. Caring for a patient contributes to physical disease, psychiatric morbidity, and increased mortality. 4
Depression among Family Caregivers Depression is the most frequently documented negative psychological consequences of caregiving. Advanced diseases or receiving palliative care: 30% ~ 50%. (Pitceathly & Maguire, 2003) Caregivers of terminally ill cancer patients reported higher prevalence of depressive symptoms than caregivers of AIDS or dementia patients. (Flaskerud, Carter & Lee, 2000) 5
Depression among Family Caregivers Gap of current knowledge Family caregivers in East Asian countries are known to have a strong sense of filial piety and a traditional caregiving ideology. They are generally presumed to be protected from psychological distress arising from caregiving. There is scant information regarding the impact of caregiving on Chinese/Taiwanese families of terminally ill cancer patients. 6
Purposes of The Study Investigate the objective and subjective caregiving burden for family caregivers of terminally ill cancer patients in Taiwan. Identify determinants for negative emotional impact of caregiving depressive symptoms for Taiwanese family caregivers of cancer patients. 7
Research Design Cross-sectional survey conducted from March to October 2005 112 caregivers were recruited from 126 potential subjects (participation rate: 88.9%) by a convenience sampling strategy. Eligibility criteria: Identified as the person most involved with the actual care of the terminally ill cancer patient Age > 21 years old and agree to participate 8
The Profile of Family Caregivers The majority of family caregivers of terminally ill cancer patients were: female (63.9%), married (88.6%) the patient s spouse (42.0%), child (39.3%) Mean age : 49.9 years old (range: 21-86, median: 50.8 years old) educational level high school (65.2%) lived with the patient (73.2%) 9
Theoretical Framework of Caregiving Background and Context Demographic characteristics Progression of the decline Illness trajectory and diagnosis Symptoms, and functional dependency Stressors: Objective caregiving loads Caregiving Tasks Intensity of caregiving Amount of time spent in caregiving Appraisal of caregiving Confidence in caregiving Impact of caregiving Resources Social support Religious and faith practices Internal coping capability Mastery, Self-efficacy Personality Outcomes Negative indicators Emotional and Psychological distress Positive indicators Meaning making (Pearlin et al., 1990; Nijboer et al., 1998) 10
Measurements Background or contextual factors Patient characteristics and disease variables Symptom distress: Symptom Distress Scale Caregiver characteristics: (McCorkle & Young, 1978) Demographics and relationship with the patient Frequency and intensity of contact between patients and families (Lobchuk & Degner, 2002) Prior caregiving experience 11
Measurements Objective caregiving burden: Amount of time spending in caregiving per day Care tasks and levels of care (Emanuel et al., 1999) Personal care Homemaking Transportation Health care 4-point scale: none at all to always 12
Measurements Subjective caregiving appraisal: Confidence in caregiving (Teno et al., 2001) Confidence in taking care of the patient at home and knowing how to expect /do at death Caregiving Reaction Assessment (CRA) daily schedule, health, finance, social support, and self-worth (esteem) (Given et al., 1992) A higher score represented a stronger negative impact of the attribute 13
Measurements Outcome Measure Negative emotional impact of caregiving Center for Epidemiological Studies- Depression Scale (CES-D) (Radloff, 1977) Total score: 0~60 Cutoff: >15 clinical depression 14
Statistical Analysis Multivariate logistic regression with backward selection was used to identify determinants of depressive distress. For parsimony, only those variables that exhibited statistically significant associations or differences with depressive distress at bivariate analyses by chi-square statistics and independent t-tests were entered into the initial model. 15
Results Objective Caregiving Burden Time spent in caregiving each day (Hours) 45 40 40.2 35 30 25 20 15 17.9 16.1 10 12.5 11.6 5 0 1.8 <2 2~5 5~8 8~12 12~16 16~24 16
Results Objective Caregiving Burden Care Tasks provided frequently or always (%) 80 75 76.8 70 65 66.9 67.0 60 60.8 55 50 Personal care Homemaking Transportation Health care 17
Results Subjective Caregiving Burden Item mean scores of the CRA subscales 5.0 4.5 4.0 4.0 3.5 3.0 2.5 2.7 2.6 2.0 1.5 1.9 2.1 1.0 Schedule Self-esteem Support Health Finance 18
Depression among Family Caregivers CES-D scores for Taiwanese caregivers Range: 3-55, M (SD)=24.01 (11.24) Prevalence of clinical depression: 75.9% 19
Depressed vs Non-Depressed Caregivers Bivariate analysis: Patient demographics and disease-related: None was significantly different between depressed and non-depressed caregivers. Caregiver demographics/relationship Married, spousal, with low educational level and insufficient financial status were more likely to be depressed. No influence of closeness of relationship 20
Depressed vs Non-Depressed Caregivers 100 Prevalence of clinical depression (CES-D IV 16) 90 80 70 60 50 40 30 20 10 0 80.8 50 65.1 82.4 89.4 66.2 91.9 68.6 Married >High school Spousal Insufficient finance Yes No 21
Depressed vs Non-Depressed Caregivers 5.0 Depressed Non-depressed 4.5 4.0 4.55 4.39 4.15 4.39 4.3 4.57 3.5 3.0 2.5 2.0 1.5 1.0 Contact Talk Knowledge 22
Depressed vs Non-Depressed Caregivers Bivariate analysis: Objective caregiving burden: None was significantly different between depressed and non-depressed caregivers. Subjective appraisal of caregiving: There were significances in Confidence in taking care of the patient at home Caregiving impact on schedule, health, finance, and support. 23
Depressed vs Non-Depressed Caregivers Time spent in caregiving each day (Hours) Prevalence of clinical depression (CES-D IV 16) 80 79 78 77 76 75 74 73 72 71 73.4 73.7 79.4 70 < 8 9~16 17~24 24
Depressed vs Non-Depressed Caregivers Care Tasks and Level of Care 4.00 Depressed Non-depressed 3.50 3.39 3.00 2.94 2.82 2.97 2.89 3.21 2.99 2.93 2.50 2.00 1.50 1.00 Personal care Homemaking Transportation Health care 25
Depressed vs Non-Depressed Caregivers Confidence in knowing what to do Prevalence of clinical depression (CES-D IV16) 90 80 70 60 50 40 30 20 10 58.80 79.00 64.70 78.00 Yes No 63.90 81.50 0 When the patient was dying At the time of death Take care of the patient at home (p=.04) 26
Depressed vs Non-Depressed Caregivers Scores of CRA subscales 25 Depressed Non-depressed 20 20.2 19.0 15 13.9 10 12.6 11.1 11.5 9.0 9.0 8.3 5 6.5 0 Schedule (p=.07) Self-esteem Support (p=.007) Health (p=.001) Finance (p=.005) 27
Determinants of Clinical Depression Variable b * Wald χ 2 p Odds Ratio 95% CI ** OR Intercept -1.50 3.09 0.08 Caregiving impact on health 0.23 6.92 0.009 1.26 1.06, 1.49 Spouse 1.12 3.88 0.05 3.06 1.01, 9.32 Model significance Model Chi-square (df=2) 16.02 p=0.0003 Model Goodness-of-Fit Statistics Criterion Value df Value/ df p Deviance 100.32 103 0.97 0.55 Pearson 116.17 103 1.13 0.18 28
Discussion High prevalence of clinical depression among Taiwanese family caregivers Author (year) Country % Author (year) Country % Raveis (1998) USA 30 Kim (2005) USA 30 Flaskerud (1998) USA 50 Schreiner (2003) Japan 52.9 Aranda (2001) Australia 21-30 Lee (2004) Korea 85.0 Haley (2001) USA 55 KA 71.0 Grov (2005) Norway 18-30 CA 63.0 29
Discussion Appropriate threshold of CES-D for different ethnic groups Threshold may not be applied to cultural groups that tend to somatize psychological problems Cheng and Chan (2005): 22 vs 16 Revised prevalence of clinical depression for Taiwanese family caregivers of terminally ill cancer patients: 52.9% 30
Discussion Determinants of clinical depression Appraisal of caregiving is the more salient predictor than objective measures of caregiving stressors, such as amount and duration of time spent in caregiving, care tasks, and intensity of caregiving Caregiving impact on health Confidence in taking care of patients at home 31
Implications Taiwanese family caregivers were at an extraordinarily high risk of clinical depression. Effective interventions shall target on spousal family caregivers to reduce the negative impact of caregiving on their health by modifying their subjective appraisal of caregiving loads. 32