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This is to certify that the

thesis entitled
IS THERE A SIGNIFICANT RELATIONSHIP BETWEEN THE IMPACT OF
SYMPTOM DISTRESS ON DEPENDENCIES IN ACTIVITIES OF
DAILY LIVING, INSTRUMENTAL ACTIVITIES OF DAILY LIVING,
SATISFACTION WITH HEALTHCARE PROVIDERS, AND SATISFACTION

WITH INFORMATION RECEIVED DURING CANCER TREATMENTS
presented by

Nancy J. Winters

has been accepted towards fulfillment
of the requirements for

Master of Science degree in Nursing

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IS THERE A SIGNIFICANT RELATIONSHIP BETWEEN THE IMPACT OF
SYMPTOM DISTRESS ON DEPENDENCIES IN ACTIVITIES OF
DAILY LIVING, INSTRUMENTAL ACTIVITIES 0F DAILY LIVING,
SATISFACTION HITH HEALTHCARE PROVIDERS, AND SATISFACTION
NITH INFORMATION RECEIVED DURING CANCER TREATMENTS

By

Nancy J. Winters

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF SCIENCE IN NURSING

College of Nursing
1993

ABSTRACT
IS THERE A SIGNIFICANT RELATIONSHIP BETWEEN THE IMPACT OF
SYMPTOM DISTRESS 0N DEPENDENCIES IN ACTIVITIES 0F
DAILY LIVING, INSTRUMENTAL ACTIVITIES OF DAILY LIVING,

SATISFACTION WITH HEALTHCARE PROVIDERS, AND SATISFACTION
WITH INFORMATION RECEIVED DURING CANCER TREATMENTS

By

Nancy J. Winters

This descriptive study, using secondary data and a convenience
sample of 72 clients diagnosed with a solid tumor or lymphoma,
symptomatic or having dependency in either self-care or instrumental
activities of daily living, and currently under treatment for new or
recurrent disease, was undertaken to examine the relationship between
the impact of symptom distress on dependencies in activities of daily
living, instrumental activities of daily living, caregiver satisfaction
with health care providers, and caregiver satisfaction with information
received during cancer treatment. Findings included caregiver and
patient sociodemographic profiles. The clients were found to have
experienced low severity of symptom distress, with caregivers reporting
the greatest self-care deficit in instrumental activities of daily
living and high degree of provider and informational satisfaction.
Limitations of the study, recommendations for future research, and

implications for advanced nursing practice are presented.

Copyright by
NANCY JANE WINTERS
1993

ACKNOWLEDGEMENTS

Thank you to Barbara Given, my committee chairperson, for her
patient and never ending encouragement during the development of this
project. Your timely feedback on numerous drafts and willingness to
discuss the project at any time or place provided the support and
guidance needed for completion. Thank you to Charles W. Given for
assisting me in organizing what I had written to maximize project
usefulness and clarity. Your willingness to provide guidance in
Barbara's absence was greatly appreciated. Thank you to Brigid Warren
for your professional and emotional support, and assistance with
"cognitive restructuring" during periods of confusion and frustration.

Thank you to my family for your everlasting love and support
throughout this entire educational endeavor. Without you none of this

would have been possible.

iv

TABLE OF CONTENTS

LIST OF TABLES .......................... vii

LIST OF FIGURES .......................... viii

INTRODUCTION ............................ 1

LITERATURE REVIEW .......................... 3

Activities of Daily Living and Instrumental Activities of Daily

Living ............................ 4

Symptom Distress ........................ 6

Satisfaction with Health Care Providers ............ 8

Satisfaction with Information ................. 10

CONCEPTUAL FRAMEWORK ........................ ll

METHODS ............................... 15

Sample ............................. 17

Data Collection ........................ 19

Operational Definitions .................... 21

Activities of Daily Living ................. 21

Instrumental Activities of Daily Living .......... 21

Symptom Distress ...................... 21
Satisfaction with Health Care Providers/Satisfaction with

Information ........ _ ................ 22

Scoring ............................ 22
Activities of Daily Living and Instrumental Activities of

Daily Living ....................... 22

Symptom Distress ...................... 22

Satisfaction with Health Care Providers .......... 23

Satisfaction with Information ............... 23

Analysis ............................ 23

Protection of Human Subjects .................. 25

ANALYSIS .............................. 25

Sample Characteristics ..................... 25

Research Question #1 .................... 26

Research Question #2 .................... 29

Research Question #3 .................... 31

STUDY LIMITATIONS .......................... 35

IMPLICATIONS FOR NURSING PRACTICE .................. 37

V

Table of Contents (Continued)

RECOMMENDATIONS FOR FURTHER RESEARCH ................ 43
REFERENCES ............................. 46
APPENDIX A UCRIHS Approval ..................... 50
APPENDIX B Tools .......................... 51

vi

LIST OF TABLES

Table l: Sociodemographic Characteristics of Caregivers and

Patients .......................... 18
Table 2: Descriptive Statistics for Symptom Distress, ADL's, and

IADL's ........................... 28
Table 3: Correlations Between Symptom Distress and ADL's and IADL's

Correlation Coefficients .................. 30
Table 4: Descriptive Statistics for Patient Symptom Distress and

Caregiver Satisfaction with Health Care Providers ..... 30
Table 5: Descriptive Statistics for Patient Symptom Distress and

Caregiver Satisfaction with Information .......... 32
Table 6: Frequency and Reliability Alphas of Original Study ..... 32

vii

LIST OF FIGURES

Figure 1: Theory Mutual Goal Attainment .............. 16
Figure 2: Modified Mutual Goal Attainment ............. 36

viii

INTRODUCTION

Improvements in diagnostic and cancer treatment techniques has made
it possible for patients diagnosed with cancer to receive treatment in
ambulatory care centers while remaining in their homes (Ferrell, Cohen,
Rhiner, & Rozek, 1991). Cancer diagnosis and treatment bring about fear
and emotional tension creating impaired comprehension and communication
(Hiromoto & Dungan, 1991; Northouse, 1984). Individual responses vary
widely and are different to predict, but include psychological distress
and mood disturbances (Munkres, Oberst, & Hughes, 1992).

Researchers have identified how cancer influences virtually every
dimension of life, testing the coping resources of the individual and
family as they struggle to normalize life on a daily basis (Ferrell, et
al., 1991; Given, Stommel, Given, Osuch, Kurtz, & Kurtz, 1993; Gotay,
1984; Haberman, Woods, & Packard, 1990; Lewis, Stetz, & Primono, 1986).
After a diagnosis of cancer, patients require support from health care
providers to obtain needed information to prepare for the effects on
functional status and management of symptom distress created by cancer
treatments. Typically, patients and families have not been adequately
prepared to meet the physical and psychological demands associated with
a cancer diagnosis (McCorkle & Given, 1989). The patient-caregiVer
dyads experience powerlessness, ambivalence, interdependence,
uncertainty, and role change (Lewis, Ellison, & Woods 1985). The

development of a partnership between health care providers and the

I

2
patient is essential in providing information and anticipatory guidance
that will empower the patient while facing the impact of cancer
treatments.

This study seeks to address the following research question among
patients with cancer who are receiving treatments and their caregivers:
Is there a significant relationship between patient reported symptom
distress and caregivers perceptions of dependencies in activities of
daily living, instrumental activities of daily living, satisfaction with
health care providers, and satisfaction with information received during
cancer treatments. There may be a difference in how the caregivers and
patients ultimately perceive the impact of cancer and its treatment on
symptom distress, dependencies in AOL/IADL's, and satisfaction with
health care providers, and information received. This study does not
address this issue, however, it is a strong indicator for continued
research in this patient population, as perceptions of the dyad
separately and together need to be used to guide health care
interventions in order to achieve optimum treatment outcomes. The
identification of treatment impact on cancer patients will enable a
primary health care provider to better prepare the patient for
multidimensional changes necessitated by both the treatment of the
disease and potentially the long term effects of the disease.

The research questions to be explored are: 1) What is the
relationship between patient symptom distress, and the impact as
perceived by caregivers on activities of daily living, and instrumental
activities of daily living for patients with cancer? 2) What is the
relationship between patient symptom distress and caregiver satisfaction

with health care providers? and 3) What is the relationship between

3
patient symptom distress and caregiver satisfaction with information
received during cancer treatment?

The author will review relevant literature in the area of
activities of daily living and instrumental activities of daily living,
symptom distress, and the demands of illness subconcepts of caregiver
satisfaction with health care providers, and caregiver satisfaction with
information received during the course of illness. King's theory of
goal attainment will be utilized as the theoretical framework to
describe the context within which the relationship among study variables
can be couched. A descriptive correlational design will be used to
address the study hypothesis. Study findings, relevance and practice
implications for nurses in advanced practice will be discussed.

LITERATURE REVIEW

A diagnosis of cancer is regarded as a dreaded emotional and life
threatening experience, in which the primary burden of care has
increasingly become the responsibility of the patient and family due to
improvements in diagnostic and cancer treatment techniques shifting
treatment centers to ambulatory care centers (Given et al., 1993;
Hiromoto & Dungan, 1991; McCorkle & Given, 1989).

As treatment progresses the cancer patient has greater difficulty
in maintaining a life pattern of normalcy. Need for assistance with
normal activities of daily living increases as physical and psychosocial
reserves decrease. Supportive relationships and the communication style
within the family is known to affect the adaptation and self care
practices of the patient (Lewis et al., 1985).

For the purposes of this study the conceptual definitions are

extrapolated from "Family Homecare for Cancer Patients" funded by the

 

4
American Cancer Society, with Barbara A. Given and Charles W. Given as
principal investigators. The conceptual definitions of functional
status, symptom distress, and the demands of illness subconcepts of
satisfaction with health care providers, and satisfaction with
information received will be discussed within the review of literature.
Activities of Daily Living and Instrumental Activities of Daily Living

Dependency in activities of daily living and instrumental
activities of daily living are defined as a person's need for help or
assistance from other people in order to perform activities that under
ordinary circumstances an adult can perform independently (McCorkle et
al., 1989A), and is one of the most relevant indicators of survival time
(Rueben, Mor, & Hiris, 1988). Activities of daily living (ADL) are
activities that people do habitually and universally and their
performance without help is recognized as necessary for independent
functioning (Stone & Murtaugh, 1990). ADL's include personal self care
functions that require a minimum of physical strength, i.e., eating,
bathing, toileting, and movement within ones residence (Given & Given,
1991; Stone & Murtaugh, 1990). Given's (1993) study indicates the
patients' symptom distress and number of dependencies in ADL's
significantly correlate with reported levels of patient depression. A
severely disabled person is defined as having two or more impairments in
AOL functioning (Cummings et al., 1990; Stone & Murtaugh, 1990). Two or
more deficits in ADL's is the primary disability measure used to
determine eligibility for federally reimbursed skilled home care
assistance (HCFA, 1990; Stone & Murtaugh, 1990).

Instrumental activities of daily living include those activities of

daily living that require greater strength and endurance, i.e.,

 

5
housework, shopping, laundry, and cooking (Given & Given, 1991; Stone &
Murtaugh, 1990). Need for IADL assistance is an important indicator of
the services chronically ill individuals need to live in the community.
Having one or more IADL limitations is associated with subsequent
nursing home placement and hospitalization (Branch, Goldberg, a Cheh,
1982; Donaldson & Jagger, 1983). Physical deterioration as a result of
both the disease and the effects of treatment affect the ability of
patients with cancer to perform everyday activities and may even
compromise their ability to comply with prescribed treatment plans (Mor,
Allen, Houts, & Siegel, 1992).

Since use of diagnosis alone is a poor indicator of health care
needs, cross referencing AOL & IADL deficits with the clients diagnosis,
age, comorbid conditions, and severity of illness (Taylor, 1988)
significant insight is provided for development of an individualized
health care plan. The ability to predict patient outcomes and develop
effective health care plans to meet their needs is highly dependent on
identification of the disease progression, the treatment side effects
and the AOL/IADL deficits. Assessing the impact of cancer treatments
and predicting outcomes is focused primarily on a patients' functional
performance. Functional performance in adults over the age of 18 years
is readily evaluated by using the Karnofsky Performance Scale (Crooks,
Waller, Smith, & Hahn, 1991; Milstein, Cohen, & Sinks, 1985; Mar,
Laliberte, Morris, & Wiemann, 1984) as a tool to assess the individuals
ability to function and work within their community.

The Karnofsky Performance Scale (KPS) has been widely used since
its development in 1948 with proven validity and reliability (Mor et
al., 1984). Crooks et al. (1991) use the KPS to determine outcomes and

6
risk in the geriatric population. The KPS was highly predictive of
hospitalization, survival days, community residence and
institutionalization.

Higher risk populations like the elderly and those with serious
chronic illnesses such as cancer, require more comprehensive assessments
with innovative multidisciplinary plans frequently due to comorbid
preexisting conditions and diminished access to social support systems.
Mor et al. (1984) evaluated the Karnofsky Performance Status scale as a
reliable measure of cancer patients' ADL & IADL status, as well as, a
predictor of response to therapy and survival. The KPS scale was shown
to be a reliable instrument in measuring the degree of impairment
experienced by cancer patients as a result of the disease and/or
treatment and should be able to predict the length of survival of
terminally ill cancer patients.

Instrumental functioning includes activities requiring the
expenditure of strength and endurance. Unmet needs or assistance with
transportation to the physician may affect treatment compliance and
outcomes (Mor et al., 1992). Support from other outside resources to
perform self care activities is a strong indicator of overall severity
of illness. The ability to independently perform activities of daily
living and instrumental activities of daily living is greatly dependent
on the severity of symptom distress caused by the disease and/or
treatment (Dodd, 1992; Sarna, 1993).

Symptom Distress

Symptom distress is defined as "the subjective manifestation of
discomfort reported by the patient in relation to the perception of the
symptom experience" (McCorkle & Young, 1978; McCorkle & Given, 1989).

 

7
The presence of symptoms, as well as, the severity of symptoms are
assessed to determine the patients' perception of symptom impact. In
Given's (1993) study the patients' depression was explained largely by
their symptomatology, and to a lesser extent by loss of mobility. This
study found that cancer sites and stages of disease progression impacts
prognosis, disability and treatment-related symptomatology which
influence the patients' psychological adjustment and depressive
symptomatology. The patients' immobility, symptom distress and numbers
of dependencies in AOL were all moderately to highly correlated with
patients' reported levels of depression. This study suggests that a
cancer patients' depression was largely explained by the physical
discomfort related to symptomatology of the cancer or the associated
treatment and, to a lesser extent, by loss of mobility. In Rhodes,
Watson, and Hanson (1988) study tiredness and weakness were identified
as symptoms that most interfere with self-care activities.

Outpatient chemotherapeutic treatments are becoming intensified in
terms of potential toxicity. Increasingly toxic doses of
chemotherapeutic agents create greater symptom distress and decreased
functional status placing patients at greater risk for developing
treatment complications. The side effects of cancer treatments that
were reported with the greatest frequency in Dodd's (1982) study were
nausea and vomiting, loss of hair, taste and smell changes, and decrease
appetite. In that study patients used a five point Likert scale to rate
the severity of each side effect with an average score of 3.6. Dodd
found that the greater the number of chemotherapeutic drugs a patient
received the lower the functional status and greater the impact on self

care with increased risks for complications. The severity of treatment

8
side effects (symptom distress) has a greater affect on the patients'
overall functional status than the number symptoms experienced (Musci &
Dodd, 1990).

Mar et al. (1992) identified the four most commonly occurring
symptoms seen during cancer treatments as pain, nausea, diarrhea, and
shortness of breathe, and higher number of symptoms correlated with
greater declines in functional status. Nausea and vomiting, decreased
appetite, altered elimination pattern, pain, generalized weakness, loss
of hair, and changes in taste and smell were the most frequently
occurring symptoms encountered by patients receiving cancer treatments
in similar studies (Dodd, 1982; Given & Given, 1991; Rhodes et al.,
1988).

Cancer patients experience hardships in response to changes in
their functional status, and symptom distress as a result of cancer
treatments or disease progression require sensitivity and
multidimensional support from health care providers.

Satisfaction with Health Care Providers

The relationships between primary care providers and patients have
a significant impact on patient satisfaction and outcomes. Positive
provider-patient-caregiver triads ensure more accurate diagnosis and
provide effective health education through enhanced communications
(Hilton, Butler, 5 Nice, 1984). Patient trust (the amount of
satisfaction the patient associates with confidence in the provider),
provider respect (satisfaction associated with the level of courtesy and
consideration shown by providers), accessibility of services
(satisfaction associated with the variety and availability of service),

and the range of services (satisfaction with the variety and

9
availability of service were four categories used in Hilton et al.
(1984) study to explore patient satisfaction in family practice verse
non-family practice settings). All four patient satisfaction scores
were significantly higher among family practice patients. Previous
research shows that patients generally report high levels of
satisfaction with medical service and care (Kurata, Nogawa, Phillips,
Hoffman, & Werblun, 1992) and lower levels of satisfaction with access
to care (Hilton et al., 1984; Kurata et al., 1992).

Kurata et al. (1992) study showed that patient satisfaction with
advanced practice nursing providers exceeded that of physicians in the
same practice setting. Patients were more satisfied with the amount of
time spent with the nurse practitioner, as well as, their technical
skills, and explanation of condition. Access to care which included
waiting time to see a provider while at clinic setting and number of
days to get an appointment was the area identified by patients and
providers alike as the areas with greatest need for improvement.

Currently there is little literature available to indicate the
extent to which cancer patients are satisfied with the quality of care
they receive. Wiggers, Donovan, Redman, and Fisher (1990) study dealt
with 232 ambulatory cancer patients about the importance of and
satisfaction with the physicians technical competence and interpersonal
and communication skills, accessibility and continuity of care, hospital
and clinic care, non-medical care, family care, and finances. Most of
the patients in this study indicated satisfaction with the opportunities
provided to discuss their needs with the health care provider, the
interpersonal support of the health care provider, and the technical

competence of the health care provider. Only a few patients were

10
satisfied with the provision of information concerning their disease,
treatment, and symptom control and the provision of care in the home and
to family and friends.

Previous research on cancer patient satisfaction with care does not
provide a sound basis upon which interventions to improve patient
satisfaction can be developed. Past research does not adequately
address the total care needs of cancer patients, and it has not allowed
cancer patients themselves to indicate the issue they consider to be of
particular importance (Wiggers et al., 1990).

Satisfaction with Information

Providing information regarding the rationale for treatment and
actions to be taken to lessen the severity of treatment side effects
empowers the patient-caregiver dyad by enhancing coping resources which
increases knowledge and participation in care, while decreasing overall
anxiety (Call & Davis, 1989; Hiromoto & Dungan, 1991; Nail, Greene,
Jones, & Flannery, 1989). Individual coping strategies affects
information-seeking behaviors.

Hileman and Lackey (1990) identified the demands of illness as
psychological, informational, and those related to household
responsibilities. Hileman & Lackey (1990) recognized the need for
patients and significant others to have information regarding strategies
to preserve and maintain the integrity of the patients' physical being,
including dietary requirement, activity levels, pain relieving measures,
and disease and treatment course.

Informational needs for both the patient and family correlate with
the likelihood of threat for the actual need to be realized (Derdiarian,

1987). The patient seeking information is attempting to appraise harms,

11
threats, and resources in relation to each other. Deriarian's (1987)
study found that patients' informational needs related to prognosis and
treatment were more important than information related to diagnosis or
tests. The information about treatments and prognosis are most
definitive of the patients' physical survival. This study implies that
individual cancer patients' informational needs should be determined by
Maslow's hierarchy of needs, as well as the amount, imminence, and
likelihood of threat. Patient-caregiver dyads need anticipatory
guidance to effectively manage symptom distress and avoid potentially
severe complications (Mor et al., 1992). Information adds
predictability to treatment side effects and gives the dyad increased
control which improves the overall quality of life (Haberman et al.,
1990; Lazarus, 1984).

The literature lacks identification of effective patient
educational and counseling approaches for cancer patient-caregiver dyads
experiencing recurrence or newly diagnosed disease. Self-determined
multidimensional needs of cancer patients as perceived by cancer
patients is not addressed in the literature.

This study will provide insight into the impact cancer treatments
have in terms of patient experienced symptom distress and functional
status which will enhance the knowledge health care providers have about
the patients' condition to more effectively focus the informational and
treatment needs of this patient population.

CONCEPTUAL FRAMEWORK

The concepts of functional status and symptom distress,

satisfaction with health care providers, and satisfaction with

information related to the demands of illness concept for cancer

12
patients undergoing treatment have been discussed. A conceptual
framework for the management of symptom distress to enhance functional
status through satisfaction with health care providers and information
received to enhance the quality of life for cancer patients will be
presented. The purpose of the conceptual framework will be to develop a
model which will be used for theory building in the areas of symptom
management to enhance functional status through increased patient-
caregiver satisfaction with health care providers and information
received, which will be useful for advanced practice nurses in planning
and implementing nursing interventions for patients undergoing cancer
treatments. Having reviewed the literature on functional status,
symptom distress, and the demands of illness subconcepts of satisfaction
with health care providers, and satisfaction with information, the
research concepts will be explored within King's theory of goal
attainment (King, 1981). King's (1981) nursing theory of goal
attainment is that nurses and patients can interact in such a manner
that goals are identified and decisions are made concerning the means to
achieve goals. These goal directed interactions are referred to as
transactions, which is the underlying framework for the Theory of Goal
Attainment.

The environment is conceptualized as an open system with permeable
boundaries which allow the exchange of matter, energy and information
between human beings. The family is viewed as a social system bound
together by a common purpose.

King's (1981) conceptual framework for nursing practice is based on
three interacting systems. The personal, interpersonal, and social

systems (Fitzpatrick & Whall, 1989; King, 1981). The interpersonal

13
system is the core of King's conceptual framework (King, 1981).
Perceptions, communication and transactions within the nursing theory
are the primary components of the human interactional process.
Perceptions involve the acceptance and organization of information,
processing and acting on the information provided, storing information
for future use, and providing information to the health care providers.
The perception of the family during the interactional process determine
the degree of success the interaction will ultimately have on health
related behaviors. The interactional process involves both verbal and
nonverbal behaviors between the health care provider and the patient
and/or family. Providing information to the patient to facilitate
positive health behaviors and outcomes is defined as the communication
process (Fitzpatrick & Whall, 1989). Communication is the verbal or
non-verbal transfer of information between two or more individuals
(King, 1981). The effectiveness of the nurse-patient relationship is
based on the quality of the interaction. This communication process is
a positive, nurturing, reciprocal interaction where trust and intimacy
are integral to it's overall quality and success.

The transaction is the process of interaction in which the nurse
and patient relate to environmental factors to achieve valued goals
(Fitzpatrick & Whall, 1989). Transactions are goal-directed behaviors
that reduce stress or tension during transitional periods in the life
cycle (King, 1981). The transactions that occur between the nurse and
the patient validate beliefs, symptoms or decreased functional status,
and affirms self worth to develop or obtain needed resources to promote
health. This support assists the patient and/or family in taking on new

roles and reducing stress during cancer diagnosis and treatment. The

14
exchange of information is relative to the demands of illness involving
social exchange, bargaining, and mutual goal setting.

Role is identified within the interpersonal system because it
depicts the interactive relationship between the advance practice nurse
and the patient, and the style and manner of communication that takes
place (King, 1981) is the level of communication where patient
satisfaction with both the health care provider and the information
received occurs. The patient negotiates new roles and establishes goals
for the immediate future with plans to achieve them for continued growth
and development throughout the crisis (Clements & Roberts, 1983). The
advanced practice nurse through the nursing process has the expertise to
assess patient status, and facilitate appropriate goal setting to
accomplish the expected outcomes. The process of altering roles
presents the potential for increased stress for the patient within the
family environment.

The family and patient in collaboration with the health care team
strive to maintain balance for continued growth and development. This
team strives to mitigate stressors which would increase symptom
distress, and decrease functional status thereby reducing the
effectiveness of nursing care and ultimate patient—caregiver
satisfaction with treatment outcomes.

The advanced practice nurse in a primary care setting interacts
with the family to share information, knowledge, and set goals as a
means to successfully meet the needs of the patient and caregiver while
promoting interventions for optimal treatment outcomes. Mutual goal
accomplishment leads to patient-caregiver satisfaction. Mutual goal

setting, and identification of stressors is based on a mutually

 

15
trusting, and intimate communication process. The transaction that
occurs leads to goal attainment, which activates the family and
community network outcomes for the cancer patient.

The clinical nurse specialist (CNS) possesses the knowledge that
must be conveyed to the patient. The patient acknowledges the CNS as a
helping, knowledgeable resource. Decision-making is the action taken
based on perceptions of the interactional process. Decisions are
focused on ultimate goal attainment, which occurs through the process of
mutual goal setting.

In Figure 1 the research concepts have inserted into King's theory
of goal attainment. Functional status and symptom distress are depicted
under the perceptions of the patient-caregiver dyad and nurse.
Satisfaction with health care providers and satisfaction with
information are identified under communication. The theory of mutual
goal attainment assumes that transaction, action and reaction take place
between the health care provider and the patient. Herein, is the
exchange of information that guides the individual health care plan
based on the needs of the patient, which is the driving force for the
exchange of information/education between the health care provider and
the patient.

METHODS

The analysis for this study will be based on data obtained as part
of the longitudinal studies supported by grant #1R01NR01915, "Family
Home Care for Cancer--A Community Based Model," funded by the National
Center for Nursing Research; and grant #PBR-32, "Family Homecare for

Cancer Patients,” funded by the American Cancer Society. Principal

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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I7
Investigator, Barbara Given, PhD, RN, FAAN, A-230 Life Sciences,
Michigan State University, East Lansing, MI 48824-1317.

The primary aim of this study is to examine the relationship
between the impact of symptom distress, on dependencies in activities of
daily living, instrumental activities of daily living, caregiver
satisfaction with health care providers, and caregiver satisfaction with
information received during cancer treatment.

Sample

This study employed a convenience sample of 196 patient-caregiver
dyads recruited through six community based cancer treatment centers.
Criteria for inclusion were as follows: adult patients over 20 years of
age, diagnosed with a solid tumor or lymphoma, symptomatic or having
dependency in either self care or instrumental activities of daily
living, and currently under treatment for new or recurrent disease.

Each patient was asked to identify his/her primary caregiver. In a
subsequent telephone interview, the caregiver was asked to verify that
he/she was in fact the primary caregiver for the patient. Dyads
interested in participation completed and returned a card to the
research center. Over 80 percent of those caregivers who indicated an
interest in the project returned cards and were then contacted by the
research staff to determine eligibility and to explain conditions for
participation in the study.

In Table 1 sociodemographic characteristics of the caregivers and
patients, types of cancer, treatment modalities and illness status
(primary versus recurrent cancer) of the patients are presented.
Approximately two thirds of the caregivers were female, while the

patients were almost equally divided according to gender. Eighty

18

 

 

Table 1
r i h r t ri i s f r iv r an ti n =7
Caregiver Patient
# % # %
Age (in years) X255.7 50-12.98 X-60.78 SD-12.53
Males 20 28 44 61
Females 52 72 28 39
Caregiver Relationship to Patient
Spouse 52 72
Parent 2 3
Other . 18 25
Caregiver Education
Less than high school 10 14
Completed high school 28 39
Some college and above 34 47
Illness Status
Primary S6 78
Recurrent 16 22
Primary Site of Cancer
Bladder 1 1
Breast 7 10
Colon/Rectal 18 25
Gastrointestinal 2 3
Gynecological 3 4
Lung 30 42
Lymphoma 5 7
Other 6 8
Current Patient Therapy
Chemotherapy 56 78
Radiation 15 21
Hormonal 1 1
Other 20 28

Household Income X-535902 SD=$20542 Range-$1000-S72500

 

19
percent of the caregivers were married to their patients. Just over
half of the caregivers and their patients had received some college
education. Fifty-three percent of the patients were newly diagnosed and
47 percent were experiencing recurrence at time of entry into the study.
The four most prevalent primary sites were breast, lung, colorectal, and
lymphoma. Finally, the treatment modality was primarily chemotherapy,
with some patients undergoing radiation and hormonal treatments or
combination. *
Data Collection

The data collection was completed through telephone interview by
graduate nursing or medical students specially trained in role playing,
using a structural interview guide and self-administered questionnaires.

Three scales were used to measure the identified concepts from
patients and their caregivers.

Cancer related symptomatology was measured using the McCorkle
Symptom Distress Scale (McCorkle & Young, 1978). This self-report
measure was administered to patients via mailed questionnaire. This was
a twelve item questionnaire designed to obtain information about symptom
occurrence and severity on a 5-point Likert scale.

Content and face validity was established when the initial tool was
established in 1978 through pilot study conducted with cancer patients
reporting the symptoms measured by the scale. In previous studies the
Cronbach coefficient alpha was used to determine the reliability of the
scale. The reliability coefficient alpha was .82143 and the
standardized item alpha was .8256 indicating the scale has good

reliability (Given & Given, 1989).

20

Measurement of patients' deficits, i.e., AOL, and IADL were
accomplished through the use of modified versions of two scales. The
first was taken from the OARS Multidimensional Assessment Questionnaire
(Filebaum & Snyder, 1981). The second measure of patient functioning,
derived from the Medical Outcomes Studies (Steward, Ware & Brook, 1981)
focused on mobility and ability to perform identified physical tasks.
In validity studies the AOL and IADL were related to patients' status as
community residents of residents of institutions (Given & Given, 1989).
In a study by Wolinsky et al. the IADL and AOL measures were found to
have high reliability with alpha coefficients of .83 and .85
respectively (Given 8 Given, 1989). This is a fourteen item scale
designed to identify the intensity of assistance required from the care
provider on behalf of the patient on a 5-point Likert Scale.

The satisfaction with treatment scale is a subscale of the Demands
of Illness Inventory developed by Haberman et al., 1990. This scale
obtains information about treatment issues measured on a 5-point Likert
Scale ranging from 0 "not at all" to 4 "extremely". The subscale
administered deal with accommodation to regimen; treatment evaluation;
and relationship with providers. For the purpose of this study this
subscale was examined in two parts. Question 1-6 examine the caregiver
relationship with providers, and questions 7—16 examine caregiver
satisfaction with information received regarding cancer treatment.

The Demands of Illness Inventory (D011) was developed and revised
as part of a larger research program focusing on the impact of breast
cancer, diabetes, and fibrocystic breast changes. The initial 0011
contained 110 items and nine hypothesized dimensions or subscales:

physical symptoms, personal meaning of illness, cognitive functioning,

21
family functioning, illness attribution, body image, symptom monitoring,
treatment issues, and emotion. The 0011's content validity has been
examined and supported by researcher and clinical specialist. The
internal consistency reliability were obtained for 0011: coefficient
alpha, item subscale, and subscale-subscale correlations. The treatment
issues subscale used in this study displayed satisfactory internal
consistency reliability. Construct validity has been examined by
correlational analysis indicating that the 0011 measures a discrete
concept (Haberman et al., 1990).
Operational Definitions

Activities of Daily Living. The self care activities as reported
from the caregivers perspective include: 1) eating, bathing, dressing,
toileting, grooming; 2) mobility--walking, movement inside the house,
transferring bed to chair, lift/turn in bed; and 3) incontinence--need
cleaned because of incontinence of bowel or bladder (Given & Given,
1991).

men A ivities f ail ivin . The instrumental
activities of daily living are operationalized as: housework,
limitations on ability to run, lifting heavy objects (25 lbs. or more),
participating in sports, difficulty walking several blocks, lifting or
stooping; difficulty walking one block or climbing one flight of stairs
(Given & Given, 1991).

Symptom Distress is self reported and included symptoms and the
severity of symptoms for the following: nausea, appetite, insomnia,
pain, fatigue, bowel, concentration, appearance, outlook, and cough.
The presence of symptoms, as well as the severity of symptoms, were

assessed to determine the patient's perception of symptom impact.

22

Satisfaction with Heslth Cats Providers/Sstisfaction with
lntggmgtjgg addresses the sensitivity of the health care provider in
interpersonal interactions with the patient-caregiver dyad as perceived
by the caregiver. Satisfaction with information received addresses the
quality of information provided by the health care provider related to
the disease and treatment as perceived by the caregiver. As previously
discussed, providing information regarding the rationale for treatment
and actions to be taken to lessen the severity of treatment side effects
empowers the dyad by enhancing coping resources with increases knowledge
and participation in care, while decreasing overall anxiety (Call 8
Davis, 1989; Hileman & Lackey, 1990; 1991; Nail et al., 1989).

Scoring

Activities of Daily Living and Instrumentsl Activities of Dgily
Liying. This ”Involvement" scale is completed by the caregiver. The
evaluation of deficits in AOL/IADL's is a fourteen item scale designed
to identify the intensity of assistance required from the caregiver on
behalf of the patient on a 5-point Likert Scale ranging from 0-4, with 0
indicating independence and 4 indicating maximum amount of dependency.

A total score of "0" is indicative of total patient independence with
all AOL/IADL's. A total score of "56" is indicative of total patient
dependence with AOL/IADL's on the caregiver.

Symptgm Distress. The symptom distress scale is completed by the
patient. This is a twelve item questionnaire designed to obtain
information about symptom occurrence and severity on a 5-point Likert
Scale ranging from 1-5, with 1 indicating "no problems exist" and number
5 indicating the "maximum amount of symptom distress exists". An

accumulative score of 12 indicates that minimal or no symptom distress

23
is experienced. An accumulative score of 60 is indicative of severe
symptom distress.

n w t He lt re Prov’ r . The Demands of Illness
subscale examines the relationship between the patient-caregiver dyad
and the careprovider. Questions 1-6 examine the quality of this
relationship as perceived by the caregiver. The 5-point Likert Scale
ranging from 0-4 with 0 indicating "not at all" and 4 indicating
”extremely”. A total score of "0' is indicative of high sensitivity of
the health care provider as perceived by the caregiver. A total score
of '24" is indicative of low sensitivity of the health care provider as
perceived by the caregiver.

Satisfgttign gjth Informatign. Satisfaction with information
received regarding treatment scale examined the caregivers level of
satisfaction with information received during the cancer treatment
process. Questions 7-16 examine the quality of information received.
The 5-point Likert Scale ranging from 0-4 with 0 indicating ”not at all"
and 4 indicating "extremely". A total score of "0" is indicative of
complete satisfaction by the careprovider with information received from
the health care provider. A total score of ”40" is indicative of
complete dissatisfaction with information received from the health care
provider.

Analysis

The descriptive analysis will include: 1) frequencies, means, and
standard deviations for each ADL, IADL, and symptom distress identified;
2) Pearson r correlations between items in AOL, IADL, and symptom
distress; 3) Pearson r correlations between ADL, IADL, symptom distress,

and the 0011 subscales of satisfaction with health care providers, and

24
satisfaction with information received. The correlational studies will
be used to identify the relationship between the coefficients.

Question #1: What is the relationship between symptom distress,
activities of daily living, and instrumental activities of daily living
for patients with cancer?

Descriptive statistics will be used to determine: 1) frequencies,
means, and standard deviations for each ADL, IADL, and symptom group;
and 2) correlations between AOL, IADL, and symptom group.

Question #2: What is the relationship between patient symptom
distress and caregiver satisfaction with health care providers?

Descriptive statistics will be used to determine: 1) frequencies,
means, and standard deviation for each symptom group, and caregiver
satisfaction scores; and 2) correlations between each symptom group and
caregiver satisfaction with health care provider scores.

Question #3: What is the relationship between patient symptom
distress and caregiver satisfaction with information received during
cancer treatment?

Descriptive statistics will be used to determine: 1) frequencies,
means, and standard deviations for each symptom group, and caregiver
satisfaction with information scores; and 2) correlations between each
symptom group and caregiver satisfaction with information scores.

The SPSS-X computer program will be used for data analysis. Tables
will include patient characteristics such as age, sex, caregiver
relationship to patient, caregiver education, illness status, primary
site of cancer, and current patient therapy with descriptive statistics

frequencies, means, standard deviation, and percents, if relevant.

25

If the researcher's hypotheses are true, that symptom distress
experts a greater impact on the demands of illness subconcepts
identified, than does functional status, then the descriptive statistics
shall provide a more detailed view of the needs of recurrent and newly
diagnosed cancer patients receiving treatment. This information will
assist primary care providers in providing education, implementing
clinical interventions, and development and utilization of appropriate
community resources to better meet the needs of this client population.
Protection of Human Rights

As previously discussed, study participants were identified through
clinics and private practice sites. A card back system was used to
assure confidentiality. Consents were obtained from patients who chose
to participate in the study. Subjects identified were kept
confidential. All findings were compiled in aggregate form and coded
numerically for data analysis. The "Family Homecare for Cancer--A
Community Based Model" grant received Human Subjects approval in
accordance with research criteria. Approval from Michigan State
University's Committee on Research Involving Human Subjects will be
obtained for data analysis under the expedited review process.

ANALYSIS

Sample Characteristics

This study used a convenience sample of 72 patient-caregiver dyads
recruited through six community based cancer treatment centers.
Criteria for inclusion were as follows: adult patients over 20 years of
age, diagnosed with a solid tumor or lymphoma currently under treatment
for new or recurrent disease. Each patient was asked to identify

his/her primary caregiver. In a subsequent telephone interview, the

26
caregiver was asked to verify that he/she was in fact the primary
caregiver for the patient. Dyads interested in participation completed
and returned a card to the research center and were followed by trained
graduate nursing and medical students every three months through
telephone contact and self-administered questionnaires. Over 80 percent
of those caregivers who indicated an interest in the project returned
cards and were then contacted by the research staff to determine
eligibility and to explain conditions for participation in the study.
This data was collected six months after the patient initiated cancer
treatments.

In Table 1 sociodemographic characteristics of the caregivers and
patients, type of cancer, treatment modalities and illness status
(primary versus recurrent cancer) of the patients are presented. There
were 72 patient-caregiver dyads participating in this wave of the study.
Approximately two thirds of the patients were male (N=44) while 72
percent (N=52) of the caregivers were females. Seventy-two percent of
the caregivers (N=52) were married to their patients. Forty-seven
percent of the caregivers (N=34) had received some college education.
Seventy-eight percent of the patients were newly diagnosed (N-56) and 22
percent (N-16) were experiencing recurrence at the time of entry into
the study. The three most prevalent cancer sites were lung (N=30),
breast (N-7), and colorectal (N-18). Finally, the treatment modality
was primarily chemotherapy, with 21 percent (N-IS) of the patients
undergoing radiation and 28 percent (N-20) undergoing combination
treatments.

Researgh Question #1. Descriptive statistics were employed to

provide background information regarding symptom distress, AOL's, and

27
IADL's for the sample. Frequencies, means, and standard deviations of
AOL, IADL both individually and as a group, as well as, symptom distress
are summarized in Table 2.

The caregiver perceived that patients they were caring for required
the greatest assistance in dressing (X-.26), and bathing (X-.29) with
few ADL deficits. The caregivers reported the greatest deficits in
IADLs as compared to ADLs with housework (X-2.21), laundry (X-1.39), and
cooking (X-1.12) being the three greatest areas of patient self-care
deficit. This finding would seem to correlate with the findings of
other researchers, as instrumental activities of daily living are those
activities requiring greater strengths and endurance (Given & Given,
1991; Stone & Murtaugh, 1990). Patients in this study present as having
minimal ADL deficits. Two or more deficits in ADL's is the primary
disability measure used to determine eligibility for federally
reimbursed skilled home care (HCFA, 1990; Stone & Murtaugh, 1990). With
28 percent (N-20) of the caregivers being male, it would be of interest
to identify if these individuals regularly performed housework, laundry,
and cooking before their loved one became ill. If not it would seem
that the gender of the caregiver may affect the perception of IADL
deficit.

Symptom distress as measured by the McCorkle Symptom Distress scale
in this study was self-reported by fewer patients. It is unknown
whether 29 fewer patients experienced symptom distress as these
questionnaires were not returned by the participating patients. The 43
patients reporting symptom distress (X=1.78) identified their discomfort
as relatively mild.

28

 

 

Table 2
I- . v- . ' i for u! -m Ii r- AD ' .1. ‘I
Mean SD Range Freq Alpha

Caregiver Reported

ADL .22 .51 0-3 72 .46
eating .10 .45 72
dressing .26 .45 72
bathing .29 .80 72
walking .10 .42 72
toileting .19 .68 72
bed .19 .66 72
combing hair .07 .42 72

Caregiver Reported

IADL .97 .90 0-3 71 .54
cooking 1.12 1.23 72
housework 2.21 1.13 72
shopping .90 1.09 72
laundry 1.39 1.28 72
transportation .72 .91 72
money handling .61 1.09 72

Symptom Distress 1.78 .49 1-3 43 .52

 

29

Correlational studies were completed to answer the first research
question regarding the relationship between symptom distress, ADL's, and
IADL's. When correlating AOL's and IADL's to symptom distress there was
a high correlation at the .01 significance level (r=.4074) with IADL's
as reported by the caregiver which is illustrated in Table 3. The two
IADL's that correlated the highest were housework (r-.4022) at the .01
significance level, and cooking (r=.3151) at the .05 significance level.
Symptom distress did not correlate significantly with ADL's.

Since patients in this study required assistance with housework and
cooking it was not surprising to find that the caregivers reported the
patients requiring assistance with transportation out into the
community.

Bgsggrth ngstion #g. Frequencies, means, and standard deviations
of symptom distress and caregiver satisfaction with health care
providers are summarized in Table 4.

The caregivers that responded to the satisfaction with health care
providers questionnaire indicated a high degree of satisfaction with the
patients health care provider during the preceding three months.
Twenty-eight percent (N=20) of the caregivers did not respond to this
component of the study. It is unknown whether the caregivers not
responding were satisfied with the health care provider or if they did ‘
not respond due to dissatisfaction with the health care provider, and
feared retribution to their loved one if the health care provider was
criticized. Questions 1-6 deal with the health care providers
sensitivity toward the dyad. The questions explore the health care

providers sensitivity to the caregivers preferences, opinions,

3O

 

Table 3

gprtglstipns Betwggn Symptom Djstrgss and AOL's gng IADL's gprrglatjpn

tpgftigisnts

Symptom Qistrgss

ADL .0793
Dressing -.0132
Eating .0697
Bathing -.0034
Walking ----
Toileting -.0285
Getting in Bed -.0618
Combing Hair ----

IADL .4142**
Cooking ‘ .3170*
Housework . .3838*
Shopping .2064
Laundry .2442
Transportation .3071*

Money Handling .1872

 

*=Significant LE .05
**-Significant LE .01 ,
-----Printed if coefficient cannot be computed

 

 

Table 4
I- r . iv- . ' i or '. : 11' 'u I' : .n- C. --' -r
f ’on ' e lt C r r
Mean SD Range Freq Alpha
Symptom Distress 1.78 .49 1-3 43 .52
Satisfaction with Health I

Care Providers .33 .55 0-2 52 .48

 

31
decisions, and as an individual within the context of the caregiver
role.

Correlational studies were completed to answer the second research
question regarding the relationship between patient symptom distress and
caregiver satisfaction with health care providers. When correlating
symptom distress, as reported by the patient, and satisfaction with
health care providers, as reported by the caregiver, there is
correlation (r-.1147), however, this did reach a statistically
significant level. Since the correlation is so small, the subscale used
may have been to global to adequately capture the specific concerns,
symptoms, and daily needs of the cancer population. As indicated
previously, past research does not adequately address the total care
needs of cancer patients, and has not allowed cancer patients themselves
to indicate the issues they consider to be of particular importance
(Wiggers et al., 1990). This is consistent with the findings in this
study.

Bgsgarch ngstion #3. Descriptive statistics were employed to
provide background information regarding the sample. Frequencies,
means, and standard deviations of patient reported symptom distress and
caregiver reported satisfaction with information received are reported
in Table 5.

The caregivers that responded to the satisfaction with information
from health care providers questionnaire during cancer treatments
indicated a high degree of satisfaction with information received during
the preceding three month period. Twenty-eight percent (N=20) of the
caregivers did not respond to this portion of the study. As with the

satisfaction with health care providers, it is unknown whether the

32

 

 

 

 

 

Table 5
I: . ' .. a P. ‘ 10 01. ‘ .Ana
wi rm i n
Mean SD Range Freq Alpha
Symptom Distress 1.78 .49 1-3 43 .52
Satisfaction with Information .69 .74 0-3 52 .55
Table 6
nd R i bi 't l h f r' i
Frequencies Alpha
Caregiver Reported
AOL 303 .85
IADL 303 .75
Patient Reported
Symptom Distress 198 .83

 

33
caregivers not responding were satisfied with the information provided
or if they did not respond due to dissatisfaction with the information
received from the health care provider, and feared the patient would
suffer if criticisms were made.

To answer the third research question as to the relationship
between patient reported symptom distress and caregiver reported
satisfaction with information received during cancer treatments
correlational analysis were completed. When correlating symptom
distress, as reported by the patient, and satisfaction with information
received, as reported by the caregiver, the correlation was (r=.0524)
not at a statistically significant level. As indicated previously,
individual cancer patient-caregiver dyads need anticipatory guidance to
effectively manage symptom distress and avoid potentially severe
complications (Mor et al., 1992). The responding participants in this
study indicate their general informational needs were met which added a
sense of increased control in dealing with treatment side effects and
provided the dyad with a sense of increased satisfaction improving
overall quality of life (Haberman et al., 1990; Lazarus, 1984).

In summary, the results of this study indicate that the
participants were independent, as there was minimal symptom distress
reported by the patients themselves, and minimal ADL deficits as
reported by the caregivers. The caregivers report a high degree of
satisfaction with both the health care providers and information
received during cancer treatments. There was significant correlations
between the symptom distress and IADL deficits in housework, cooking,
and transportation. It is unknown whether this correlation was impacted

by the gender of the caregivers. Symptom distress did not correlate

34

significantly with ADL's or satisfaction with health care providers of
satisfaction with information. The findings in this study correlate
with those of other researchers. The ability to independently perform
instrumental activities of daily living is greatly dependent on the
severity of symptom distress caused by the disease and/or treatment
(Dodd, 1992; Given et al., 1993; Mar et al., 1992; Musci 8 Dodd, 1990;
Sarna, 1993). The patients' dependencies in IADL's are expected to be
directly related to the impact of caring on the family members' daily
schedules or previous socialization in performing the needed IADL.

The conceptual framework as previously discussed deals with King's
theory of goal attainment. The core of this model assumes there is a
transaction between the advanced practice health care professional and
the patient-caregiver dyad. This transaction occurs to identify self-
care deficits and symptom distress. The informational component
provided by the health care professional is essential to mitigate stress
during the cancer treatment process. The results of this study indicate
that patients in the first six months of cancer treatment were not
severely distressed. The health care professionals need more
information as to the patients' and caregivers' perceptions of symptom
distress, ADL/IADL deficits, and satisfaction with health care
providers, and information received. If congruency is found between
patient and caregiver perceptions then the caregiver surveys will
provide adequate insight into the needs of the dyad.

As a result of the study findings, this researcher would
retrospectively alter the conceptual framework to better fit the needs
of the study population and facilitate the research and clinical

processes. As previously recommended, the advance practice nurse

35

functioning in the role of researcher or clinician must assess the
client's and caregivers' perceptions of all study variables both
individually and together as a dyad in order to adequately identify
potential self-care deficits or ineffective coping. Assessment must
include those areas not traditionally addressed by the health care
system which include; caregivers knowledge and ability in the operation
of household appliances, automobiles, financial management, and home
maintenance. The model in Figure 2 would seem to more adequately guide
this process.

STUDY LIMITATIONS

This study was completed on secondary data. The sample size (N272)
for this study was significantly smaller than the original study
(N-302). The clients participating in the study during Wave 111, may
have had a more homogenous sociodemographic profile. The smaller sample
size may have created a smaller distribution among the population still
participating in the study. In reducing the size of the sample a degree
of variability in responses is lost as evidenced by the alphas obtained
in the original studies. These are depicted in Table 6.

Since 28 percent (N=20) of the care providers did not respond to
the self-administered satisfaction questionnaires, it seems reasonable
to conclude that phone interview of both patients and care providers
would provide stronger insight into the impact of cancer and its
'treatment. The results are based on self-reports of the respondents,
and so are affected by pressures of self-presentation and social
desirability. Patient-caregiver dyads may need reassurance that the
treating health care provider will not receive feedback on individual

responses. The data collection may need to be conducted on a bimonthly

36

 

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37
basis to obtain more current information from the dyad. A time period
of three months may allow the dyad to forget or minimized both negative
and positive experiences. The satisfaction tool is global and does not
seem to lend itself well to the specific needs and concerns of the
cancer patient-caregiver dyad. This study was conducted only on Wave
III of a much larger individual study. Examination of patient-caregiver
profiles of previous study waves may provide insight into the 28 percent
(N-ZO) of caregivers who did not respond to the satisfaction surveys in
the third wave of the study. The patients (N=29) not responding to the
Wave III symptom distress survey may have dropped out of the study for
numerous reasons including death. Examination of patient profiles in
previous studies may provide valuable insight into the findings in this
study.

The caregiver involvement tool does not provide the researcher with
knowledge of which IADL activities the care provider performed prior to
the patient's cancer diagnosis and treatment, or if there had been a
change in caregiver involvement since cancer diagnosis. Knowing the
caregivers involvement with running the household prior to the patients
cancer diagnosis will provide insight into their perception of caregiver
burden, as well as, the type of amount of support/services they will
require to meet the challenges of caregiving. As previously mentioned,
the gender and historical involvement in running and household of the
caregiver may skew the data results.

IMPLICATIONS FOR NURSING PRACTICE

The results of this study provided insight into the ADL, IADL,

symptom distress, satisfaction with health care providers, and

satisfaction with information received for patient-caregiver dyads

38

during cancer treatments. Some of the research methodology could be
altered to determine the perceptions of both the patient and caregiver
(see Implications for Further Research). Patient limitations during
this phase of cancer treatment, as described, will assist the health
care provider in identifying needs of the dyad when evaluation for
coordination of resources within the family unit and community at large.

In the clinical setting the clinical nurse specialist (CNS)
utilizes collaboration and consultation with other members of the health
care team, technical skills and nursing knowledge to assess and
formulate nursing diagnosis while providing direct primary nursing care.
The formal educational process enables the advanced practice nurse to
base assessments, and nursing diagnosis on nursing theory to promote the
clients ability for self-care, maintenance of health, promotion of
rehabilitation in relation to disabilities, and effectively cope with
chronic health problems like cancer (MSU Faculty, 1991). Identifying
the clients readiness to learn becomes a primary factor in the education
and health promotion process. During assessment and educational
processes, the clinician utilizes counseling skills to facilitate
problem-solving within the family structure to enhance the individuals
coping behaviors. The CNS must assess the patient-caregivers
perceptions of functional status and symptom distress to adequately
provide information needed to the dyad to successfully help the dyad
mitigate potentially stressful events and side effects of the disease
and its treatment. A comprehensive assessment is completed through the
development of a trusting relationship between the dyad and primary

caregiver.

39

b.“

The assessment for this population must include the traditional
health related items during functional assessment, i.e., bathing,
dressing, eating, toileting. However, the assessment must also be

expanded to include those items not directly related to the physical

k-‘v

well being of the patient, which include, i.e., laundry, transportation,
housekeeping, shopping, and functional management. The functional
assessment then becomes a comprehensive assessment of the dyad and their"
roles within the family unit. a:
Health care providers must also assess the patient and caregivers: ‘
perception of symptom distress at each contact. As previously -w.“s 6
indicated, this study supports the findings of other researchers (Dodd,
1992; Given et al., 1993; Mar et al., 1992; Musci & Dodd, 1990; Sarna,
1993) in that the inability to perform instrumental activities of daily
living are highly correlated to the severity of symptom distress. The .:
perceptions of symptom distress of both patient and caregiver must be Id?

assessed to identify potential incongruencies in patient and caregiver'i-

’-

perceptions to adequately provide the dyad with stress mitigating
strategies. Ultimately the patient-caregiver will be equipped with the i
needed knowledge and skills to implement appropriate self-care behaviorss
and effectively cope with the chronic illness. Consequently, the dyad
will experience a high sense of satisfaction with the information I
received and the health care provider. .,9 1r
Patient and caregiver satisfaction with health care providers and
information received during cancer treatments must be part of the '“
evaluation process at each contact. Allowing the dyad to individually i

provide feedback into the health care system will provide immediate e

insight into the human interactional process. Early identification of :-

40
problems with the interpersonal process will be identified and can then
be dealt with within a time frame that will more adequately meet the
needs of the population served. Ineffective provider styles and
interventions will be more readily identified. The providers and
interventions that are determined effective will be identified and can
then be expanded on and taught to other members of the health care team.

During the assessment process the advanced practice nurse should be
watchful for caregiver stress and ineffective coping, knowing when to
provide stabilizing support, and when to utilize the referral process to
obtain care needed for the dyad. The clinical nurse specialist (CNS)
must provide ongoing assessments of the needs of the cancer patient-
caregiver dyad. The AOL/IADL deficits of the patient will change over
the course of the disease as treatments change and the disease
progresses or recurs. Patient dependencies in AOL/IADL's impact the
degree of involvement the caregiver will have in meeting the daily self-
care needs of the patient.

When male caregivers are involved the health care provider needs to '
determine the degree of previous involvement in household maintenance,
as additional outside resources may need to be accessed. Informal
support systems from other family members and/or friends may be
available and should be explored. The baby boomer generation in
combination with the ”age wave" may change the type of resources the
health care community will ultimately require to meet the needs of
chronically ill patients. Increasing numbers of women are leaving the
home to seek outside employment opportunities to help meet the financial
needs of their families. The multigenerational families living in one

household are returning form the past bringing with it new challenges to

41
the family unit (Dychtwald & Flower, 1989), as well as, to governing
social policy. Exploring the needs of the dyad with both the patient
and caregiver will facilitate the development of a comprehensive
treatment plan that will ultimately function as a road map for success
for the family.

Recurrent disease and end stage disease present different
challenges for the patient-caregivers and primary health care providers.
Patients with recurrent disease need information from the primary care
physician on other treatment options (Adams, 1991), and the possibility
of dying from recurrent disease. Additional community resources for
transportation and skilled home nursing services may be needed to
support the physical demands that more potentially toxic treatments may
impose. Patients that have caregivers that are highly educated, or have
mean incomes at opposite ends of the scale, or are not family members
will require vastly different health care and community resources to
meet their AOL/IADL needs. It is clear that the needs of cancer
patient-caregiver dyads are individualized and require specialized
assessments, planning, implementation, and evaluation to adequately meet
their needs.

Counseling and guidance for the patient-caregiver dyad through
values clarification enables the CNS to provide anticipatory guidance
throughout the treatment process. The educational process regarding the
disease, treatment, and available community resources is continuous as
the needs of the dyad are in a constant state of flux. The primary care
provider must develop goal oriented strategies in a collaborative effort
with the dyad to foster maintenance and achievement of health-oriented

goals will enhance the patient's ability to overcome barriers of

42
powerlessness, and improve the understanding of actions and compliance
required to achieve positive outcomes. In assisting the client in this
manner, the CNS must continually assess the dyad's personal, social,
spiritual, and psychological resources.

Networking within the community for access to both formal and
informal support systems is a key factor in mitigating the impact of
cancer and its treatments. The CNS with specialized knowledge possesses
the clinical judgement skills to assess the AOL/IADL deficits and
symptom distress to plan for and coordinate access to community
resources when added assistance from formal or informal systems are
warranted. The health care delivery system must continually be
evaluated to assess appropriateness and effectiveness, based on the
presenting needs of the cancer patient served.

Evaluation of health care interventions through satisfaction
surveys with both patients and caregivers will provide information
regarding the effectiveness of the individual health care providers, as
well as, the information provided during the course of treatment. The
caregivers in this study indicated a high degree of satisfaction with
both the health care providers and the information received during
treatments. The satisfaction instrument used was global in nature. The
CNS must assess the communication process with the patient-caregiver
dyad at each contact using nursing theory to guide his/her practice.
The research model used in this study was adapted from King's theory of
goal attainment, and is readily adaptable to clinical practice from
which it is intended. The evaluation of nursing process by both the
client and the nurse takes place within the core of the goal attainment

model. The process of action, reaction and transaction are vital for

43
the establishment and ultimate achievement of health directed goals.
Figure 2 depicts the clinical adaptation for mutual goal attainment in
the clinical setting. The perceptions, communication and transactions
within this nursing theory are the primary components of the human
interactional process. This process provides the advance practice nurse
with needed insight for effective patient care interventions.

Client advocacy within the health care system and in the community
at large will assure that needed consumer resources are available to
promote health within the entire community. Identifying needs within
the health care delivery system, and the community guides practice and
facilitates a pro-active approach to institute necessary change in the
delivery of health care and related social policy for this patient
population.

The clinical nurse specialist continually evaluates patient
population needs and provides needed community education for early
detection of cancers, risks associated with various types of cancer, and
encourages consumers to choose a lifestyle that minimizes their cancer
risk.

RECOMMENDATIONS FOR FURTHER RESEARCH

As a result of this study, some suggestions for future research can
be made.

First, researchers should explore not only caregivers responses to
assistance needs but also patients' perceptions of their own limitations
and compare them to determine if caregivers' responses accurately
reflect patient needs in AOL, IADL, satisfaction with health care
providers, and satisfaction with information provided during cancer

treatments. If the caregiver and patient responses significantly

44
correlate, then caregiver responses may be adequate for future research.
The IADL questionnaire needs to include gender specific information, so
as to better determine if the caregiver performed the household chore
prior to the disease diagnosis and treatment. The gender specific
items, i.e., cooking, laundry, housework could include qualifiers that
would determine the caregivers historical involvement in those
activities.

Further research is needed to explore the increased costs
associated with cancer diagnosis and treatment for families during
various cancer types and stages. The financial impact of breast,
colorectal, lymphoma, and lung cancer would provide insight to help
health care providers impact social policy to support those patients
whose health care costs are the highest. Costs for families would
include equipment and supplies, medication, chore/housekeeping services,
transportation costs, skilled care costs, expenditures not reimbursed by
health insurance, and lost earnings.

Additional research is needed in the area of symptom distress as
perceived by cancer patients and their caregivers. The development of
symptom distress tools designed specifically for cancer patients and
their caregivers in various stages of disease need to be explored. This
information will provide valuable insight into the degree of symptom
distress and severity perceived by cancer patients and their caregivers
experience across the stages. The impact of patient symptom distress on
the caregiver will be readily apparent. Effective interventions can be
developed based on the specific symptom needs of each dyad and

incongruent perceptions addressed.

45

It would be beneficial to replicate this study on more severely ill
patients across the stages of cancer. This information would provide
insight for clinicians, educators, and policy makers in the development
of clinical and social support systems that would more effectively
provide needed resources to cancer patients and their families.

The intent of this research study was: 1) to explore the
relationship between patient reported symptom distress and the impact,
as perceived by the caregiver, on ADLs and IADLs; 2) identify the
relationship between patient reported symptom distress and caregiver
satisfaction with health care providers; and 3) determine the
relationship between patient reported symptom distress and caregiver
satisfaction with information provided during cancer treatments.

Caregiver involvement in areas of ADLs and IADLs have been
described for patients receiving cancer treatments. The impact of
symptom distress in the first six months of cancer diagnosis and
treatment has been described. Finally, caregiver satisfaction with
health care providers, and information received during cancer treatments
has been presented. The findings in this study are similar to other
researchers (Cummings et al., 1990; Given & Given, 1991; and Stone &
Murtaugh, 1990). The study participants reported minimal ADL deficits
and were not severely disabled, although had experienced IADL deficits
that correlated significantly with experienced symptom distress. The
satisfaction information presented herein like with other research does
not adequately address the total care needs of cancer patients, and has
not allowed cancer patients themselves to indicate the issues they

consider to be of particular importance (Wiggers et al., 1990).

REFERENCES

REFERENCES

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care. ngjn nsr s in Ongplogy Nprsing, 7(2), 105- 111.

Branch, L. G, Goldberg, H. G, Cheh, V. A. (1991). Concordance between
planned and approved visits during initial home care. nglth_tapg

W31. 13(1) 83- 91

Call, J.G. & Davis, L.L. (1989). The effect of hardiness on coping
strategies and adjustment of illness in chronically ill

individuals. Appligd Nprsing Resggrgp, 2(4), 187-188.

Clements, I.W. & Roberts, F.B. (1983). Esmilv heslth: A theorgtical
apptppch to nursing psre. New York: Wiley & Sons, Inc.

Crooks, v., Waller, 5., Smith, 1., & Hahn, T.J. (1991).' The use of
Karnofsky performance scale in determining outcomes and risk in

geriatric outpatients. Journal of Gerontplpgx. i§(4), 139-144.

Cummings, J.E., Hughes, S.L., Weaver, F.M., Manheim, L.M., Conrad, K.J.,
Nash, K., Braun, 8., & Adelman, J. (1990). Cost-effectiveness of
veterans administration hospital-based home care. Arghivgs pf

Iptgrngl Mgditing, 1§Q(6), 1274-1280.

Derdiarian, A. (1987). Information needs of recently diagnosed cancer

patients. tsnger Nprsing, 19(3), 156-163.

Dodd, M.J. (1982). Assessing patient self-care for side effects of
cancer chemotherapy--Part I. Csnger Nursing, 5(2), 447-451.

Donaldson, L. J. & Jagger, C. (1983). Survival and functional capacity:
Three year follow-up of an elderly population in hospitals and

homes. Jpgr pg! pf Epjgemiplpgi gal tpmmppjty Hgglth, 31(2), 176-
179.

Dychtwald, K. & Flower, J. (1989). Agg gave; [hg challgpggs and

r uni ' f in m r'c . Los Angeles, CA: Jeremy P.
Tharcher, Inc.

Ferrell, B.R., Cohen, M.Z., Rhiner, M., & Rozek, A. (1991). Pain as a
metaphor for illness part II: Family caregivers' management of

pain. Oncology Nursing Fprum, 18(8), 1315-1321.

46

47

Filebaum, G.R. & Snyder, M. (1981). The development validity and
reliability of the OARS multidimensional functional assessment

questionnaire. Jpgrpsl pf Ggrpntolpgy, 3§(4), 428-434.

Fitzpatrick, J.J. & Whall, A.L. (1989). n r ’n .
Connecticut: Appleton & Lange.

Given, 8. G Given, C.W. (1989). Esmily hpmeggrg fpr gaptgr ; A
gpmmunity-pgsgp mppgl (Grant #1 R01 NR01915). Rockville, MD:

National Center for Nursing Research.

Given, 8. & Given, C.W. (1991). Grant #PBR-32, Family homggsrg for
er 1 ts. Funded by: American Cancer Society.

Given, C.W., Stommel, M., Given, 8., Osuch, J., Kurtz, M.E., & Kurtz,
J.C. (1993). The influence of cancer patients' symptoms and
functional states on patients' depression and family caregivers'
reaction and depression. Hgalth Psychology, 1z(4), 277-285.

Gotay, C.C. (1984). The experience of cancer during early and advanced
stages: The views of patients and their mates. c cience

flggjcing, 1_(7), 605-613.

Haberman, M.R., Woods, N.F., Packard, N.J. (1990). Demands of chronic
illness: Reliability and validity assessment of a demands-of-
illness inventory. Holistic Nursing Practise, §(1), 25-35.

Health Care Finance Administration. (1990). Conditions of Participation
for Skilled Home Care Agencies.

Hileman, J.W. 8 Lackey, N.R. (1990). Self-identified needs of patients
with cancer at home and their home caregivers: A descriptive

study. ngplggy Nursipg Eprgm, 11(6), 907-913.

Hilton, T.F., Butler, M.C., & Nice, 0.5. (1984). Patient and provider
satisfaction in navy family practice and non-family practice
clinics. The Journgj of Family Practice, 18(4), 569-573.

 

Hiromoto, B.M. & Dungan, J. (1991). Contract learning for self-care

activities. tanger Nursing, 11(3), 148-154.

King, I. (1981). A Thepry fpr Nursing. New York: Delmar Publishers,
Inc.

Kurata, J.H., Nogawa, A.N., Phillips, D.M., Hoffman, S., Werblun, M.N.
(1992). Patient and provider satisfaction with medical care. ng

Jpprnpl of Fam1|y Prsctjce, 35(2), 176-179.

Lazarus, R.S. (1984). Stygss1_apppsisplt_spd_gpp1pg. New York:
Springer Publishing.

48

Lewis, F.M., Stetz, K.M., & Primomo, J. (1986). Family coping
strategies and chronic illness in the mother. Family Relatipns,
35(2), 515-522.

Lewis, M.L., Ellison, E.S., & Woods, N.F. (1985). min On
Nursing, 1(3), 206-213.

McCorkle, R. G Young, K. (1978). Development of a symptom distress
scale. tgpggr ngsjng, 373-378.

McCorkle, R. 8 Given, 8. (1989). Meeting the challenge of caring for

chronically ill adults. Monographs pf the Amgrjgan Agademy pf
111111.114. .11. 59-69.

McCorkle, R., Benoliel, J.O., Donaldson, G., Georgiadou, F., Moinpour,
C., & Goodell, B. (1989a). A randomized clinical trial for home
nursing care for lung cancer patients. Cancer, §1(6), 1375-1382.

Michigan State University, College of Nursing (1991). Role
characteristics of the clinical nurse specialist graduate. NE 560.
Appendix B.

Milstein, J.H., Cohen, M.E., & Sinks, L.F. (1985). The influence and
reliability of neurologic assessment and Karnofsky performance
score on prognosis. tancer, §§(7), 1834-1836.

Mor, V., Laliberte, L., Morris, J.N., & Wiemann, M. (1984). The
Karnofsky performance status scale. tsptgy, 51(1), 2002-2007.

Mor, V., Allen, S.M., Houts, P., & Siegel, K. (1992). The changing
needs of patients with cancer at home. tancer, §9(3), 829-838.

Munkres, A., Oberst, M.T., & Hughes, S.H. (1992). Appraisal of illness,
symptom distress, self-care burden, and mood states in patients
receiving chemotherapy for initial and recurrent cancer. Qntplogy

Nursing Fprgm, 12(8), 1201-1209.

Musci, E. & Dodd, M.J. (1990). Predicting self-care with patient's and
family member's affective states and family functioning. ngplpgy

NursJQQ Eprgm, 11(3), 394-400.

Nail, L.M., Greene, 0., Jones, L.S., & Flannery, M. (1989). Nursing
care by telephone: Describing practice in an ambulatory oncology

center. anplogy Nursing Forum, 1§(3), 387-395.

Northouse, L. (1984). The impact of cancer on the family: An overview.

Iptgpngtipnsl Jpgrnal Psychiatry in Medigine, 11(3), 215-242.

Rhodes, V.A., Watson, P.M., & Hanson, B.M. (1988). Patients'
descriptions of the influence of tiredness and weakness on self-
care abilities. Canter Nursing, 11(3), 186-194.

49

Rueben, D.B., Mor, V., & Hiris, J. (1988). Clinical symptoms and length
of survival in patients with terminal cancer. Archives pf Internal
Medicine. mm. 1586-1591.

Sarna, L. (1993). Correlates of symptom distress in women with lung

cancer. tapggr Pragtigg, 1(1), 21-28.

Stewart, A., Ware, J., & Brook, R. (1981). Advances in the measurement
of functional status: Construction of aggregate indexes. Mgdigpl

fling, 12(5), 473-487.

Stone, R.I. 8 Murtaugh, C.M. (1990). The elderly population with
chronic functional ability: Implications for home care

eligibility. Thg Gerpntplpgist, 39(4), 491-496.

Taylor, M.B. (1988). An examination of the relationships between home
health service use and primary diagnosis of patient. Hpmg Hgglth

tars Services Quarterly, 9(4), 47-60.

Wiggers, J.H., Donovan, K.O., Redman, S., Fisher, R.W. (1990). Cancer
patient satisfaction with care. Csncer, §§(3), 610-616.

APPENDICES

MICHIGAN STATE

 

UNIVERSITY

August 6, I993

TO: Nancy J. Winters
538 Boone Rd.
Quincy, MI 49082

RE: IRB II:

793-355

TITLE: IS THERE A SIGNIFICANT RELATIONSHIP BETWEEN THE IMPACT OF

SYMPTOM DISTRESS ON DEPENDENCIES IN ACTIVITIES OF DAILY
LIVING. INSTRUMENTAL ACTIVITIES OF DAILY LIVING, SATISFACTION
WITH HEALTHCARE PROVIDERS, AND SATISFACTION WITH
INFORMATION RECEIVED DURING CANCER TREATMENTS

REVISION REQUESTED: N/A
CATEGORY: I-E
APPROVAL DATE: August 6, 1993

The University Committee on Research Involving Human Subjects' (UCRIHS) review of this project
is complete. I am pleased to advise that the rights and welfare of the human subjects appear to be
adequately protected and methods to obtain informed consent are appmpn'ate. Therefore, the
UCRIHS approved this project including any revision listed above.

Renewal:

Revisions:

 

OFFICE OF
RESEARCH

AND

GRADUATE
STUDIES "05'5"“

Ueivaralv Cemlttaa ea Chang‘s:

(UCRIHS)

Michigan State University
225 mitigation Building
EISI W09, Michigan
48824-1045

517/355-2180

FAX; 517/3361171

336-1171.

Sincerely,

   
 
  

UCRIHS Chair

DEW:pjm

David E. Wright, Ph.’ D.

UCRIHS approval is valid for one calendar year, beginning with the approval
date shown above. Investigators planning to continue a project beyond one year
must use the enclosed form to seek updated certification. There is a maximum of
four such expedited renewals possible. Investigators wishing to continue a project
beyond that time need to submit it again for complete review.

UCRIHS must review any changes in procedures involving human subjects, prior
to initiation of the change. If this is done at the time of renewal, please use the
enclosed form. To revise an approved protocol at any other time during the year,
send your written request to the UCRIHS Chair, requesting revised approval and
referencing the project’s IRB # and title. Include in your request a description of
the change and any revised instruments, consent forms or advertisements that are
applicable. the year, please outline the proposed revisions in a letter to the
Committee.

Should either of the following arise during the course of the work, investigators
must notify UCRIHS promptly: (1) problems (unexpected side effects, complaints,
etc) involving human subjects or (2) changes in the raeamh environment or new
information indicating greater risk to the human subjects than existed when the
protocol was previously reviewed and approved.

If we can be of any future help. please do not hesitate to contact us at (517) 355-2180 or FAX (517)

- I

"SUGNWWM~KIIOD CC: Dr. Barbara GIVCI‘I

rant-W, inst-Mm

50

 

CA 3, WAVE III 10 _ _ _ g
PT. 5A8 CARD 9 g g
Page 9
34. During the past month, how many days havg you been so sick that you were
unable to carry out your usual daily activities (like going to work, working
around the house, etc.). Write in number of days. __ __
.-. , 42 4
_ Number of days 62/9 5’LL
Symptoms
For each of the following symptoms there are 5 different numbered statements. Think

about what each statement says, then place a circle around the one statement for each

symptom that most closely indicates how you have been feeling lately.

The statements

on each are ranked from 1 to S, where number one indicates no problems and number five

indicates the maximum-amount of problems.

Numbers two through four indicate you feel

somewhere in between'these two extremes. PLEASE CIRCLE ONE NUMBER FOR EACH SYMPTOM.

35. l

I seldom feel
any nausea at
all

36. 1

When I do have
nausea, it is
very mild

37. I

I have my
normal
appetite

38. l

I sleep as
well as I
always have

2

_H,I am nauseous

eonce in a
while

2

When I do have
nausea, it is
mildly
distressing

2

My appetite is
usually, but
not always,
pretty good

I have
occasional
spells of
sleeplessness

NAUSEA (1)
3
I am oftgnr_
nauseous
NAUSEA (2)
3
When I have

nausea, I feel
pretty.sick

APPETITE
3
I don't really

enjoy my food
like I used to

INSOMNIA

3

I frequently
have trouble
getting to
sleep and
staying asleep

51

4

I am usually
nauseous

4

When I have
nausea I feel
very sick

4

I have to
force myself
to eat my food

I have
difficulty
sleeping
almost every
night

E’L rt 1— —
2 d! F5 44

I suffer from
nausea almost
continuously

’35:, ek\l)'z E
5

When I have
nausea, I am
as sick as I
could possibly
be

Tr.- 9‘5— '
834ml 3 46
5
I cannot stand

the thought of
food

5351“!“ I. ‘7

It is almost
impossible for
me to get a
decent night’s
sleep

CA 3, WAVE 111
PT. SAB
Page 10

39. I

I almost never
have pain

40. I

When 1 do have
pain, it is
very mild

41. I

I am usually
not tired at
all

42. I

I have my
normal bowel
pattern

43. l

I have my
normal ability
to concentrate

2

I have pain
once in a
while

2

When I do have
pain, it is
mildly
distressing

I __2_.“ .

I am .
occasionally
rather tired

2

My bowel
pattern
occasionally
causes me some
concern and
discomfort

2

I occasionally
have trouble
concentrating

PAIN (1)
3
I frequently
have pain --
several times
a week
PAIN (2)
3
The pain I do
have is

usually fairly
intense

FATIGUE

._u 1__M__L

There are
frequently
periods where
I am quite
tired

BOWEL
3

I frequently
have
discomfort
from my
present bowel
pattern

CONCENTRATION

3
I often have

trouble
concentrating

52

4

I am usually
in some degree
of pain

4

The pain I
have is
usually very
intense

4 ...n

I am usually
very tired

4

1 am usually
in discomfort
because of my
present bowel
pattern

4

I usually have
at least some
difficulty

concentrating

ID _ _ _
CARD 9 §

IN IN

~l35¢arhlgfr 4B

1 am in some

degree of pain
almost
constantly

[ssIInQ€:é; 35

The pain I
have is almost
unbearable

853MP7E
-.h “‘5

Most of the
time I feel
exhausted

51

851601304, ..
5

My present
bowel pattern
has changed
drastically
from what was
normal for me

I just can’t

seem to
concentrate at
all

CA 3, WAVE 111

PT. SAB
Page 11
44. 1 2

My appearance
has basically
not changed

My appearance
has gotten a
little worse

45. 1 ' 2

I am not I am a little

fearful or worried about.

worried things

46. i 2

I seldom cough 1 have an
occasional
cough_

lih
11/09/90
113:2

APPEARANCE
3

My appearance
is definitely
worse than it
used to be,
but I am not
greatly
concerned
about it

OUTLOOK
3
I am quite

worried, but
unafraid

.—.——.. ———...

couch
3

I often cough

53

4

My appearance
is definitely
worse than it
used to be,
and I am
concerned
about it

4

I am worried
and a little
frightened

about things

4

I often cough
and
occasionally
have severe
coughing
spells

ID _ _ _
CARD 9 s

IN IN

BSLdMPS /0 g3

My appearance
has changed
drastically
from what it
was

Eeflmpll 3:
5

I am worried
and scared
about things

5

I often have
persistent and
severe
coughing
spells

CA 3, WAVE 111
CC SAB
Page 14

DEMANDS 0F ILLNESS INVENTORY

ID _ _ _ 1 1-4
Car 9 § 8 5-7.
Date _ _/_ _/_ _ 8—13
INT _ _ 14-15
INT Code 1 16
Study 6 17

Below is a list of events and thoughts that some individuals experience when someone

in their family faces a health problem like cancer.

Please read each item carefully

and indicate the extent to which you have experienced the following problem in

relation to your relative’s cancer or treatment experience ur'n the ast three
months.
0 - NOT AT ALL
1 - A LITTLE
_ 2 - MODERATELY
At tiles, some of my spouse's/loved one's health care ' 3 . QUITE A BIT
providers have: 4 . EXTREMELY
1. been insensitive to my preferences for treatmentw‘ ”C1 0 1 2 3 4 _
18
2. acted as if my opinions are unimportant. [bchIIcl 0 1 3 4 _
19
3. made decisions without my best interests in mind.6C(‘-“(3 O 1 2 3 4 _
20
4. not 'told me the truth about changes in his/herbdflkq O 1 2 3 4 _
health. 21
5. not shown concern for me as a person. EAJIIC 5’ 0 1 2 3 4 _
22
6. not thoroughly explained my spouse’s/loved one’sad. I C- 1 2 3 4 _
health status to tile. 1‘ C _ 23
As I've experienced my partner's/loved one's illness situations, I’ve:
7. wanted more facts about the treatments. 1511 {Ht 7 0 1 2 3 4 _
24
8. 'had questions that I wanted to ask but just couldn’t I 2 3 4
flyiiltt fig
9. felt rushed to make a hasty treatment decision. 0 1 2 3 4
{5.1. II c i 26
10. wanted to be more assertive about the direction 0 I 2 3 4 _
his/her treatment should take. MIN-[0 27
11. wanted to be told the reason why, when asked t I do ‘ O 1 2 3 4 _
something for treatment 0.1.112 I; 28
12. realized I was initially unclear about the treatment 0 1 2 3 4 _
he/she would receive. 5,1,4“ 1.2. 29
13. been dissatisfied with the progress of his/he . O l 2 3 4 __
treatment. [€11.11c.1 A - 30
14. been dissatisfied with his/her medical care. .h w 74 0 1 2 3 4 __
L’yi. I- t. - 31
15. felt his/her illness was incorrectl ed. — 1 2 3 4

54

CA 3, HAVE 111

ID _ _ _ 1

CG SAB CARD 9 g g
Page 15

16. worried his/her illness may be incorrectly mana ed in 0 1 2 3 4 __

the future. £§&,1(( 1(, 33

(Care Provider: Selected from Demands of Illness Inventory.
Packard, 1987.)

/J'h
11/8/90

Hoods, Haberman, &

55

as 111. WAVE III In 1 1-,

Health Service Utilization CARD 0 4 6 5-7
Page 15 DATE _ _/__ _/_ _ 8-13
INT _ _ 14—15
INT CODE _; 16
Study g 17

INVOLVEMENT

The next set of questions addresses the PRESENT level of performance of the
person you care for on a number of activities and the way YOU AND OTHER
PEOPLE help him/her. For each item, please choose the response that most
closely describes the patient's PRESENT condition and how you assist him or
her.

 

INTERVIEWER: ‘ OTHER PEOPLE category may include assistance from
" "”agencies, paid helpers, and family and friends; “The
4;,purpose Of,» these questiohs is to... asses-.5 current
[Kinv01vement. ‘CLARIFICATION'-u-‘”Generally speaking

I over the past month..."' v v

 

DRESSING

(INTERVIEWER: Category definitions are meant for purposes at clarification)
This category includes the entire process of dressing or being 'clothes,
including change from bed clothing into the set of clothing worn during the
day, and change to bed clothing at night. This category DOES NOT include

management of clothing during toileting. u e v w s e
clothing during the day, answer "NEEEB DRESSED". Select the category that

- best describes your relative's level of functioning for DRESSING.

la. with regard to dressing, would you say ( ) ... (CHECK

ONE) fl/(Arb’s 1 '33

Is INDEPENDENT--(does not need help of another person in any
part of this activity) (GO TO ITEM #2) . (1) o

NEEDS SUPERVISION ONLY--(requires another person present during
the activity to instruct or watCh for problems, but does not
need the physical help of another person.) (2) (Go to lb)\

NEEDS SONE PHYSICAL NELP--(requires physical help and the
presence of another during all or part of this activity.) CARE
RECIPIENT PARTICIPANT. (3)1’

NEEDS TOTAL PHYSICAL NELP--(Needs another person to carry out
this activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4) t.) 1

IS NEVER 0335820 (5) ‘

(The next set of questions is about how frequently you and other people help
your relative/friend with dressing.)

56

 

 

 

 

ID _ _ _ l
CARD 0 4 ___6
6/(df‘665l3
1b. How frequently do YOU help the patient with dressing? (CIRCLE ONE) __
‘ l9
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY
INTERVIEWER: "Help" includes any combination of supervision, some
, . physical help, and total physical help.
[INTBRYiEEKEEI vaen if caregiver "never helps" AGO 10 PART C. OF
' ‘” i" ‘fiVE QUESTION (others help) i ' V
51:4. 21.55 ’2!
1c. How -often do omen paopu: help the patient with dressing? (CIRCLE
ONE)
' 20
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

57

This

ID _ _ _
CARD 0 4

aka

 

EATING

category includes all types of food and liquid taken by mouth.

 

INTERVIEWER: Includes all types of presentation"used--tray, finger

foods, etc.; client does not need to use utensils.)
Does not include selection or preparation of food.

 

2a.

(The
your

2b.

with regard to eating, would you say (- ) (CHECK

ONE) 4 . __

bketd J, 21
IS INDEPENDENT--(Does not need help of another person in any
part of this activity) (GO TO ITEM #3). (1)

NEEDS SUPERVISION ONLY--(requires another person present during
the activity to instruct or watch for problems, but does not
need the physical help of another person.) (2)

NEEDS SOME PHYSICAL HELP--(requires physical help and the
presence of another during all or part of this activity.) CARE
RECIPIENT PARTICIPATES. (3)

NEEDS TOTAL PHYSICAL HELP--(needs another person to carry out
this activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4)

 

NOT APPLICABLE (needs tube feedings, IV's ONLY--go to item #3)

next set of questions is about how frequently you and other people help
relative with eating.) ’ . 7
J5 (at to

How frequently do YOU help the patient with eating? (CIRCLE ONE) __
22
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

58

 

 

 

 

 

 

ID _ _ _ ;
CARD 0 4 6
INTERVIEWER: "Help includes any combination of superviSion, some
physical help, and total physical help.
INTERVIEWERa;, Even if.caregiver finever helps", GO TO PART C. OF
' y-"‘§QUESTION (Others Help).yy*? . 7, v i ‘
13km +4
2c. How often do OTHER PEOPLE help the patient with eating? (CIRCLE ONE)__
23
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY
BATHING

This category includes all activities of bathing, whether tub or shower or
bed bath: entry into tub or shower, wetting, soaping, rinsing, exit, drying
body. Does not include washing of head or drying hair. Does not include
dressing or undressing. Select the response that best describes your
relative's level of functioning for bathing.

3a. With regard to bathing, would you say ( ) ... (CHECK ONE)

{Ii/<54”! l. 57

IS INDEPENDENT--(Does not need help of another person in any
part of this activity) (GO TO ITEM #4). (l)

NEEDS SUPERVISION ONLY--(requires another person present during
the activity to instruct or watch for problems, but does not
need the physical help of another person.) (2)

NEEDS SOME PHYSICAL HELP--(requires physical help and the ,
presence of another during all or part of this activity.) CARE
RECIPIENT PARTICIPATES. (3)

NEEDS TOTAL PHYSICAL HELP--(needs another person to carry out
this activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4)

59

4.

ID

_ _ I
CAR 0 4 6

 

(The next set of questions is about how frequently you and other people help

your relative with bathing- ) bkljfi «("12 3

3b. How frequently do YOU help the patient with bathing? (CIRCLE ONE) _
25
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

 

INTERVIEWERQ' Even if caregiver .“never helps", . GO Or AR ‘ C. ‘O'
‘1‘ "‘ QUESTION (others help). ¢.w' ' . I A“ .

 

3c. How often do OTHER PEOPLE help the patient with bathing? (CIRCLE ONE)
3k chH\ (1!

NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
. OR LESS A WEEK (2-6) DAY A DAY

WALKING INSIDE THE HOUSE

This category includes all upright.movement on foot over the floor inside the
house. MUST MOVE AT LEAST FIVE FEET. May use cane, walker, crutches, or

handrail. Select the response that best describes your relative's level of
functioning for walking.

4a. With regard to walking inside the house, would. you say

). . . (CHECK ONE) 6k waJ Ida f7

IS INDEPENDENT-~(Does not need help of another person in any
part of this activity) (GO TO ITEM #5). (l)

NEEDS SUPERVISION ONLY--(requires another person present during
the activity to instruct or watch for problems, but does not
need the physical help of another person.) (2)

NEEDS SOME PHYSICAL HELP--(requires physical help and the
presence of another during all or part of this activity.) CARE
RECIPIENT PARTICIPATES. (3)

NEEDS TOTAL PHYSICAL HELP--(needs another person to carry out
this activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4)

mu: m NALK--(will not bear weight.) (so 7., lfém 5)

60

 

 

 

ID _ _ _ _1
CAR 0 4 6
INTERVIEWER: Even if caregiver "never helps", GO TO PART C. OF
QUESTION (Others help).

 

(The next set of questions is about how frequently you and other people help
your relative with walking.)

Bkwmlkjk
4b.

How frequently do YOU help the patient with walking? (CIRCLE ONE)

 

'2'5
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY
INTERVIEWER..' EVen if caregiver ”never helps" GO ' .' ' ’ 7'O
m (others help) ----- "

 

ng? (CIRCLE ONE)

KLLHLI k Y‘L. '2—9'

SEVERAL TIMES
A DAY

4c. How often do OTHER PEOPLE help the patient with walE§

NEVER ONCE A WEEK SEVERAL.TIHES ONCE A
OR LESS A WEEK (2-6) DAY

61

/5.

This

 

TOILETING

category includes all those behaviors associated with bowel/bladder

emptying: getting to and from toilet (or use of toileting equipment such as
bedpan), removal/adjustment of clothing, positioning on toilet, cleaning of
body parts, replacement of clothing. :Select the response that best describes

 

 

 

 

your relative's level of functioning for toileting.
5a. With regard to toileting, would you say ( )... (CHECK
ONE) . __
_ Z5A3%D:I;l 30
IS INDEPENDENT--(Does not need help of another person in any
part of this activity) (GO TO ITEM #6). (l)
NEEDS SUPERVISION ONLY--(requires another person present during
the activity to instruct or watch for problems, but does not
need the physical help of another person.) (2)
NEEDS SOME PHYSICAL HELP--(requires physical help and the
presence of another during all or part of this activity.) CARE
RECIPIENT PARTICIPATES. (3)
NEEDS TOTAL PHYSICAL HELP--(needs another person to carry out
- this activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4)
NOT APPLICABLE (has catheter, colostomy--Go to item #6)
(The next set of questions ia bout how frequently you and other people help
your relative with toileting.) .
640943
5b. How frequently do YOU help the patient with toileting? (CIRCLE ONE) __
31
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY
INTERVIENER: Even if caregiver "never helps", '0‘ ~ C. OF
QQE§IIQE (others help).
Sc. How often do OTHER PEOPLE help the patient with toileting? (CIRCLE

ON '
E) [841*00/ Y 33
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

62

 

TRANSFERRING--IN/OUT OF BED

This category includes movement to and from bed, to chair or wheelchair, or
set on toilet or commode. Devices, bars, and other mechanical aids may be

used. Select the response that best describes the relative's level of
independence.'
6a. With regard to transferring, in/out of bed, would you say

 

( )... (CHECK ONE) Bkbcdi

IS INDEPENDENT-—(Does not need help of another person in any
part of this activity) (GO TO ITEM #6). (1)

3'5

NEEDS SUPERVISION ONLY--(requires another person present during
the activity to instruct or watch for problems, but does not
need the physical help of another person.) (2)

NEEDS SOME PHYSICAL HELP--(requires physical help and the
presence of another during all or part of this activity.) CARE
RECIPIENT PARTICIPATES . (3)

NEEDS TOTAL PHYSICAL HELP-~(needs another person to carry out
this activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4)

REMAINS EEDPAST--(Go to item 7)

 

:m‘éavxm' ’  R. j IfrelatlveBm 3’3 s‘ BEDEA "$1, gatomemn

 

(The next set of questions is about how frequently you and other people help
your relative with transferring.)

6b.

How frequently do YOU help the patient with transferring? (CIRCLE ONE)
0 .-
Ok/Jadtfi 33—4

NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES

OR 'LESS A WEEK (2-6) DAY A DAY

63

ID _ _ _
CARD 0 4

and

 

 

INTERVIEWER: ' Even if caregiver “never helps", GO TO PART C. OF
‘ QUESTION (others help).

 

6c. How often do OTHER PEOPLE help the patient with transferring? (CIRCLE

ONE) A 61(66112 ‘/ —

. 35
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

The next list includes additional activities with which your relative may
require assistance. For each activity, please tell me how much help your
relative needs and how frequently you and others help with this activity.

COOKING/PREPARING MEALS gkcook _L

7a. How much help does ( ) presently need with cooking? Does
he/she need: (CHECK ONE) __
36

NO HELP? (Patient is independent.) (Go to item #8)

SOME HELP? (Patient requires some assistance: relative
participates in this activity.)

TOTAL HELP? (Patient does not participate in this activity but
has done in the past.)

TOTAL HELP? (Patient does not participate in this activity and
never has. Not family role.)

NOT APPLICABLE? (Patient has tube feedings, IV's ONLY--go to
item #8)

7b. How frequently do YOU help the patient with cooking or cook for them?
(CIRCLE ONE) 7 — _
LDkICC¢“A:~§ 37

 

NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR 1358 A wEEx (2-6) ' DAY A DAY
INTERVIEWER: Even if caregiver "never helps", GO 0 PART . OF

QUESTION (others help)._

 

64

8a.

8b.

ID _ _ _
CARD 0 4

aha

 

How frequently do OTHERS help the patient with cooking or cook for them?

(CIRCLE ONE) __
8J<Coo k‘( 38
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LEss A WEEK (2-6) DAY A DAY

HOUSEWORK—-(PICKING UP, DUSTING, LIGHT CLEANING, VACUUMING, DOING
DISHES)

How much help does ( ) presently need with housework?
Does he/she need: (CHECK ONE) bk, Aw, kl

NO HELP? (Patient is independent.) (Go to item {9)

39
SOME HELP? (Patient requires some assistance; relative
participates in this activity.)

TOTAL HELP? (Patient does not participate in this activity but
has done in the past.)

TOTAL HELP? (Patient does not participate in this activity and
never has. Not family role.)

How frequently do YOU help the patient with housework or do housework

for them? (CIRCLE ONE) 3 k [A k 3
(0" 45
NEVER . ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

 

 

INTERVIERERza:nyenfiifiCaregiVer“"neverlhelps“,
"\” "i"flfQE§§IIQE (others help).

 

8C.

How frequently do OTHERS help the patient with housework or do housework

for them? CIRCLE ONE '

( ) 6kl/wh’k‘v/ z:
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES

OR LESS A WEEK (2-6) . DAY A DAY

65

 

 

 

 

ID _ _ _ l
CARD 0 4 6
9. SHOPPING (Includes all types of purchases).
9a. How mUCh help does ( ) presently need with shopping? (Does
he/she need: (CHECK ONE) ‘ 1‘ __
BkS/lor‘ 42
NO HELP? (Patient is independent.) (Go to item #10)
SOME HELP? (Patient requires some assistance: relative
participates in this activity.)
TOTAL HELP? (Patient does not participate in this activity but
has done in the past.)
TOTAL HELP? (Patient does not participate in this activity and
never has.. Not family role.)
9b. How frequently do YOU help the patient with shopping for them? (CIRCLE
‘ '7
ONE) 6k$lt0fu3 E
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY
INTERVIEWERP”; Even if caregiver "never helpS", GO"‘ ’; LVNC
. QUESTION (others help). .
9c. How frequently do OTHERS help the patient with shopping or shop for
them? (CIRCLE ONE) » _
Bkb [\oP ‘{ 44
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY
10. LAUNDRY
10a. How much help does ( ) presently need with laundry? Does he/she
fie, need: (CHECK ONE) 5k/aqndl E

NO HELP? (Patient is independent.) (GO to item ill)

SOME HELP? (Patient requires some assistance; relative
participates in this activity.)

TOTAL HELP? (Patient does not participate in this activity but
has done in the past.)

TOTAL HELP? (Patient does not participate in this activity and
never has. Not family role.)

66

11.

 

10b. How frequently do YOU help the patient with laundry or do laundry for

th ? CIRCLE ONE > _—
em ( ) 5/C (at "(13 4 6
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES

OR LESS A WEEK (2‘6) DAY A DAY

 

IINHERVIEWER: yEven if caregiver "never helps", GO TO PART C. OF
'” ' “QUESTION (others help). ' ‘ ' '

 

10c. How frequently do OTHERS help the patient with laundry or do laundry for

 

them? (CIRCLE ONE) __
Bk («and 4 47
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY
TRANSPORTATION
11a. How much help does ( ) presently need with transportation? Does
he she need: CHECK ONE
/ ( ) 6k+l“an$ 1. .4—8

NO HELP? (Patient is independent.) (Go to item #12)

SOME HELP? (Patient requires some assistance; relative
participates in this activity.)

TOTAL HELP? (Patient does not participate in this activity but
has done in the past.)

TOTAL HELP? (Patient does not participate in this activity and
never has. Not family role.)

11b. How frequently do YOU help the patient with transportation? (CIRCLE

 

om. kfians 3 E
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES

OR LESS A WEEK (2'6) DAY A DAY
INTERVIEWSR: Even if caregiver "never helps", 69 19 2531: g, Q?

QHE§IIQE (others h€1P)-

 

67

12.

11c.

12a 0

12b.

 

ID __ _ _ __1_
CAR 0 4 6
How frequently do OTHERS help the patient with transportation? (CIRCLE
ONE) gk'l’r‘a-«OIS ‘( '5—0
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

MONEY MANAGEMENT--(PAYING BILLS, MAINTAINING ACCOUNTS)

How much help does ( ) presently need with money management?
Does he/she need: (CHECK ONE) 2?k9h0r\anl __

51
No HELP? (Patient is independent.) (Go to item #13)

SOME HELP? (Patient requires some assistance; relative
participates in this activity.)

TOTAL HELP? (Patient does not participate in this activity but
has done in the past.)

TOTAL HELP? (Patient does not participate in this activity and
never has. Not family role.) .

How frequently do YOU help the patient with money management or do money

mana ement for them? CIRCLE ONE .
.g ( ) QIkntcfi 33
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

 

INtI‘EIWIEWER''3';i Even if caregiver "never helps" 00 10 2532 Q, QE

QQ§§IL__ (others help)

 

12c. How frequently do OTHERS help the patient with money management or do

money management for them? (CIRCLE ONE)

Pkniofl (j W '5—3

NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES
OR LESS A WEEK (2-6) DAY A DAY

68

13.

14.

13a.

13b.

 

ID _ _ _ A
CAR 0 4 6

COMBING HAIR OR SHAVING
with regard to combing hair or shaving would you say ( ...
(CHECK ONE) 23 __
kCOW\b1.) 54

IS INDEPENDENT--(Does not need help of another person in any
part of this activity) (GO TO ITEM {14). (l)-

NEEDS SUPERVISION ONLY--(requires another person present during
the activity to instruct or watch for problems, but does not
need the physical help of another person.) (2)

NEEDS SOME PHYSICAL HELP--(requires physical help and the
presence of another during all or part of this activity.) CARE
RECIPIENT.PARTICIPATES. (3)

NEEDS TOTAL PHYSICAL HELP--(needs another person to carry out
this activity.) CARE RECIPIENT DOES NOT PARTICIPATE. (4)

NOT APPLICABLE--(No hair at this time--GO TO ITEM #14)

 

How often do YOU help the patient.with combing hair or shaving? (CIRCLE

ONE .
). ‘ I?‘<Crm~kl£3 33
NEVER ONCE A WEEK SEVERAL TIMES 'ONCE A SEVERAL TIMES
'OR LESS A WEEK (2-6) DAY A DAY

 

SINTERVIERER:I Even if caregiver "never helps"

 

QUESTION (others help)

 

13C.

How frequently do OTHERS help the patient with combing hair or shaving?

CIRCLE ONE I
( ) B“(r(th/) ‘/ §_6
NEVER ONCE A WEEK SEVERAL TIMES ONCE A SEVERAL TIMES

OR LESS A WEEK (2'6) ' DAY A DAY

Do you pay anyone to help you care for your relative? (CHECK ONE)

_ YES (1) NO (2) BFMJQHV

69

 

 

"W:Wlflgiiiflr