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Characteristics, care tasks, and unmet needs of informal caregivers of cancer patients. Early Findings from the Caregivers Supplement to (CanCORs) The Caregiver Supplement Working Group to CanCORS Study Goal This study sought to: ¾ Identify the characteristics of informal caregivers of patients patients in the CanCORS cohort, and ¾ Describe the specific care they provided. Sample Background Changes in the health care system have shifted much of cancer care from the hospital to the outpatient and home setting. While this shift has translated into increased family involvement in dayday-toto-day care, we have very limited information about caregivers of these cancer patients and the care they provide. Instrument Self administered mailed questionnaire Domains: • Objective caregiver burden including type of care provided, and cancer care training • Subjective caregiver burden • Financial burden of caregiving • Work and caregiving conflict • Social support & quality of relationship with patient • Health and quality of life • Health behavior and selfself-care • Demographics and health insurance coverage Sample ¾ Family caregivers were identified by the cancer patient during the patient interview. consecutive eligible informal caregivers were sent selfself-administered questionnaires and 1637 (63%) returned them. ¾ 53% (874) were caregivers for 1256 at baseline (~ 4 months post diagnosis) ¾ 47% (763) were caregivers for ¾ 2593 z • 828 (66%) of baseline cohort responded z patients with colorectal cancer. patients with lung cancer. 1337 at followfollow-up (one year post diagnosis) • 809 (61%) of followfollow-up cohort responded 1 Caregiver Sample Characteristics Relationship to cancer patient ¾ 60% (981) were spouses of patient. ¾ 33% (530) were other family members, z z z z z Caregiver Sample Characteristics ¾ 25% were men and ¾ 75% were women ¾ Average age for 3% adult son 12% adult daughter 2% patient’ patient’s father 8% patient’ patient’s mother 8% other family. z male caregivers was 61 z female caregivers was 58 (sd 13.4, range 2020-88) (sd 12.96, range 2020-97) ¾ 7% (90) were partners, friends or ¾ 73% reported living with patient neighbors. Caregiver Burden: How many days a week? 25% Caregiver Burden: How many hours a days? 20% 38% 55% < 1 d a y /w k 1 -6 d a y s /w k 37% 13% 12% <1 hr/day 5-8 hrs/day e v e ry d a y Caregiver Burden 1-4 hrs/day >8 hrs/day Number of Caregiving Tasks Performed by Cancer Type (ADL, IADL, cancercancer-specific care combined) ¾ 57% felt they had no choice in whether or not to care for patient. ¾ In studies of dementia caregivers lack of choice independently predicts worse caregiver outcomes. Lung Cancer Range 0-17 Colorectal cancer 0-17 Mean (SD) 7.5 (5.74) p<.001 6.4 (5.70) 2 Do Caregivers Get Training in Clinical Care Task? CancerCancer-specific “clinical” clinical” tasks performed. All Care- Lung givers CRC ¾ 50% Watched for treatment side-effects 58% 63% 54% Managed side-effects (fatigue, nausea, pain) Decided whether or not to call doctor 41% 44% 39% 28% 32% 25% Made a decision about meds 27% 31% 24% Changed bandages Gave O2, nebulizer treatment, chest percussions 15% 8% 13% 14% 17% 3% of caregivers who performed a clinical care task reported receiving training in that task. ¾ The remaining 50% either reported not needing training or not receiving training. Thus, at least half of caregivers who performed these tasks did so without needed training. z TaskTask-specific training among those who performed task in last 4 weeks Did you receive training in how to … Training Not Yes Needed No …help patient manage fatigue? (642) 11% 42% 47% …help patient manage pain? (639) 15% 44% 40% 16% 45% 39% …change bandages? (230) 12% 53% 35% …help 42% 34% 23% … administer medications? (481) patient manage nausea? (639) Caregiver Burden Role Strain Of those caregivers who worked: ¾ 27% reported no role strain at all ¾ 26% scored in the top 50% on an index tapping the degree of role strain* resulting from conflict between caregiving and work demands. Caregiver Burden Role Strain ¾ 52% reported working for pay z 75% of adult children of patient z 44% of spouses of patient ¾ 22% reported caring for another family member or young children at home ¾ 15% had primary parenting responsibility or also cared for another family member & also work for pay. Conclusions ¾ The majority of caregivers are female spouses who provide some care every day. ¾ Most live with the patient but sizable minority do not. ¾ More care is needed by lung cancer than colorectal cancer patients. * 3-item index, difficulty balancing work and caregiving, work interferes with caregiving, caregiving interferes with work (alpha=.88, range 1-5). 3 Conclusions (continued) Conclusions (continued) ¾ Over half of cancer caregivers in this national sample must balance work and caregiving tasks. ¾ 1 in 6: z cared for the cancer patient and z worked for pay and z cared for one or more children or other family members. ¾ Many caregivers performed “clinical” clinical” tasks but at least 25% of these did not receive needed training. ¾ Thus, many cancer patients were receiving clinical care from unpaid, untrained caregivers. ¾ 25% reported medium to high levels of role conflict and strain. Future Contribution Do caregiver factors significantly affect patient outcomes? This study may allow for estimation of the impact of caregiver factors on patient outcomes, independent of patient factors, provider factors, and medical care received. In addition, we will examine the relationship between caregiving, patient factors, and caregiver outcomes. 4