Download Characteristics, care tasks, and unmet needs of informal caregivers of cancer patients.

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
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 day-to-day
care, we have very limited information
about caregivers of these cancer patients
and the care they provide.
Study Goal
This study sought to:
 Identify the characteristics of
informal caregivers of patients in
the CanCORS cohort, and
 Describe the specific care they
provided.
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 self-care
• Demographics and health insurance coverage
Sample

Family caregivers were identified by the
cancer patient during the patient interview.

2593 consecutive eligible informal caregivers
were sent self-administered questionnaires
and 1637 (63%) returned them.

1256 at baseline (~ 4 months post diagnosis)
• 828 (66%) of baseline cohort responded

1337 at follow-up (one year post diagnosis)
• 809 (61%) of follow-up cohort responded
Sample
 53%
(874) were caregivers for
patients with colorectal cancer.
 47%
(763) were caregivers for
patients with lung cancer.
Caregiver Sample Characteristics
Relationship to cancer patient
 60% (981) were spouses of patient.
 33% (530) were other family members,





3% adult son
12% adult daughter
2% patient’s father
8% patient’s mother
8% other family.
 7%
(90) were partners, friends or
neighbors.
Caregiver Sample Characteristics
 25%
were men and
 75% were women
 Average

age for
male caregivers was 61
(sd 13.4, range 20-88)

female caregivers was 58
(sd 12.96, range 20-97)
 73%
reported living with patient
Caregiver Burden:
How many days a week?
25%
20%
55%
<1 day/wk
1-6 days/wk
every day
Caregiver Burden:
How many hours a days?
38%
37%
13% 12%
<1 hr/day
5-8 hrs/day
1-4 hrs/day
>8 hrs/day
Caregiver Burden
 57%
felt they had no choice in
whether or not to care for patient.
 In
studies of dementia caregivers
lack of choice independently
predicts worse caregiver
outcomes.
Number of Caregiving Tasks
Performed by Cancer Type
(ADL, IADL, cancer-specific care combined)
Lung Cancer
Range
0-17
Colorectal cancer 0-17
Mean (SD)
7.5 (5.74)
6.4 (5.70)
p<.001
Cancer-specific “clinical” tasks performed.
All Care- Lung
givers
CRC
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%
Do Caregivers Get Training in
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.
Task-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
 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 Burden
Role 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).
Conclusions
 The
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)
 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)
 Many
caregivers performed “clinical” tasks
but at least 25% of these did not receive
needed training.
 Thus,
many cancer patients were
receiving clinical care from unpaid,
untrained caregivers.
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.