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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. Background. - PowerPoint PPT Presentation
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Characteristics, care tasks, Characteristics, care tasks, and unmet needs of and unmet needs of
informal caregivers of informal caregivers of cancer patients.cancer patients.
The Caregiver Supplement Working Group to CanCORS
Early Findings from the Caregivers SupplementCaregivers Supplement
to (CanCORs)
BackgroundBackground
Changes in the health care system have Changes in the health care system have shifted much of cancer care from the shifted much of cancer care from the hospital to the outpatient and home hospital to the outpatient and home setting. While this shift has translated into setting. While this shift has translated into increased family involvement in day-to-day increased family involvement in day-to-day care, we have very limited information care, we have very limited information about caregivers of these cancer patients about caregivers of these cancer patients and the care they provide. and the care they provide.
Study GoalStudy Goal
This study sought to:This study sought to: Identify the characteristics of Identify the characteristics of
informal caregivers of patients in informal caregivers of patients in the CanCORS cohort, andthe CanCORS cohort, and
Describe the specific care they Describe the specific care they provided.provided.
InstrumentInstrumentSelf administered mailed questionnaire Self administered mailed questionnaire
Domains:Domains:• Objective caregiver burden including type of care Objective caregiver burden including type of care
provided, and cancer care trainingprovided, and cancer care training• Subjective caregiver burdenSubjective caregiver burden• Financial burden of caregivingFinancial burden of caregiving• Work and caregiving conflictWork and caregiving conflict• Social support & quality of relationship with patientSocial support & quality of relationship with patient• Health and quality of lifeHealth and quality of life• Health behavior and self-careHealth behavior and self-care• Demographics and health insurance coverageDemographics and health insurance coverage
SampleSample Family caregivers were identified by the Family caregivers were identified by the
cancer patient during the patient interview.cancer patient during the patient interview.
2593 consecutive eligible informal caregivers 2593 consecutive eligible informal caregivers were sent self-administered questionnaires were sent self-administered questionnaires and 1637 (63%) returned them.and 1637 (63%) returned them. 1256 at baseline (~ 4 months post diagnosis)1256 at baseline (~ 4 months post diagnosis)
• 828 (66%) of baseline cohort responded 828 (66%) of baseline cohort responded
1337 at follow-up (one year post diagnosis)1337 at follow-up (one year post diagnosis)• 809 (61%) of follow-up cohort responded809 (61%) of follow-up cohort responded
SampleSample
53% (874) were caregivers for 53% (874) were caregivers for patients with colorectal cancer.patients with colorectal cancer.
47% (763) were caregivers for 47% (763) were caregivers for patients with lung cancer. patients with lung cancer.
Caregiver Sample CharacteristicsCaregiver Sample Characteristics
Relationship to cancer patientRelationship to cancer patient 60% (981) were spouses of patient.60% (981) were spouses of patient. 33% (530) were other family members,33% (530) were other family members,
3% adult son3% adult son 12% adult daughter12% adult daughter 2% patient’s father2% patient’s father 8% patient’s mother8% patient’s mother 8% other family.8% other family.
7% (90) were partners, friends or neighbors.7% (90) were partners, friends or neighbors.
Caregiver Sample CharacteristicsCaregiver Sample Characteristics
25% were men and 25% were men and 75% were women75% were women
Average age for Average age for male caregivers was 61 male caregivers was 61
(sd 13.4, range 20-88)(sd 13.4, range 20-88) female caregivers was 58 female caregivers was 58
(sd 12.96, range 20-97)(sd 12.96, range 20-97)
73% reported living with patient73% reported living with patient
Caregiver Burden:Caregiver Burden:How many days a week?How many days a week?
2 5 % 2 0 %
5 5 %
< 1 d a y / w k 1 - 6 d a y s / w k e v e r y d a y
Caregiver Burden:Caregiver Burden:How many hours a days?How many hours a days?
38%
12%13%
37%
<1 hr/day 1-4 hrs/day
5-8 hrs/day >8 hrs/day
Caregiver BurdenCaregiver Burden
57% felt they had no choice in 57% felt they had no choice in whether or not to care for patient.whether or not to care for patient.
In studies of dementia caregivers In studies of dementia caregivers lack of choice independently lack of choice independently predicts worse caregiver predicts worse caregiver outcomes.outcomes.
Number of Caregiving Tasks Number of Caregiving Tasks Performed by Cancer TypePerformed by Cancer Type
(ADL, IADL, cancer-specific care combined)(ADL, IADL, cancer-specific care combined)
RangeRange Mean (SD)Mean (SD)
Lung CancerLung Cancer 0-170-17 7.5 (5.74)7.5 (5.74) p<.001p<.001
Colorectal cancerColorectal cancer 0-170-17 6.4 (5.70)6.4 (5.70)
Cancer-specific “clinical” tasks performed.Cancer-specific “clinical” tasks performed.
All Care-givers
Lung CRC
Watched for treatment side-effects 58% 63% 54%
Managed side-effects (fatigue, nausea, pain)
41% 44% 39%
Decided whether or not to call doctor
28% 32% 25%
Made a decision about meds 27% 31% 24%
Changed bandages 15% 13% 17%
Gave O2, nebulizer treatment, chest percussions
8% 14% 3%
Do Caregivers Get Training in Do Caregivers Get Training in Clinical Care Task?Clinical Care Task?
50% of caregivers who performed a clinical care task reported receiving training in that task.
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.
Did you receive training in how to …TrainingNot Needed
Yes NoNo
…help patient manage fatigue? (642) 11% 42% 47%47%
…help patient manage pain? (639) 15% 44% 40%40%
… administer medications? (481) 16% 45% 39%39%
…change bandages? (230) 12% 53% 35%35%
…help patient manage nausea? (639) 42% 34% 23%23%
Task-specific training among those who Task-specific training among those who performed task in last 4 weeksperformed task in last 4 weeks
52% reported working for pay 75% of adult children of patient
44% of spouses of patient
22% reported caring for another family member or young children at home
15% had primary parenting responsibility or also cared for another family member & also work for pay.
Caregiver BurdenCaregiver BurdenRole StrainRole Strain
Caregiver BurdenCaregiver BurdenRole StrainRole Strain
Of those caregivers who worked:
27% reported no role strain at all
26% scored in the top 50% on an index tapping the degree of role strain* resulting from conflict between caregiving and work demands.
* 3-item index, difficulty balancing work and caregiving, work interferes with caregiving, caregiving interferes with work (alpha=.88, range 1-5).
ConclusionsConclusionsThe majority of caregivers are female
spouses who provide some care every day.
Most live with the patient but sizable minority do not.
More care is needed by lung cancer than colorectal cancer patients.
Conclusions (continued)Conclusions (continued) Over half of cancer caregivers in this national sample
must balance work and caregiving tasks. 1 in 6:
cared for the cancer patient and worked for pay and cared for one or more children or other family
members.
25% reported medium to high levels of role conflict and strain.
Conclusions (continued)Conclusions (continued)
Many caregivers performed “clinical” tasks Many caregivers performed “clinical” tasks but at least 25% of these did not receive but at least 25% of these did not receive needed training.needed training.
Thus, many cancer patients were Thus, many cancer patients were receiving clinical care from unpaid, receiving clinical care from unpaid, untrained caregivers.untrained caregivers.
Future ContributionFuture ContributionDo caregiver factors significantly affect patient Do caregiver factors significantly affect patient outcomes?outcomes?
This study may allow for estimation of the impact of This study may allow for estimation of the impact of caregiver factors on patient outcomes, independent of caregiver factors on patient outcomes, independent of patient factors, provider factors, and medical care received.patient factors, provider factors, and medical care received.
In addition, we will examine the relationship between In addition, we will examine the relationship between caregiving, patient factors, and caregiver outcomes.caregiving, patient factors, and caregiver outcomes.