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This is to certify that the

thesis entitled

CHILDHOOD CHRONIC ILLNESS: HEALTHY SIBLING'S
PERCEPTION OF FAMILY COPING

presented by

Sherry Nelson

has been accepted towards fulfillment
of the requirements for

Master of Science degreein Nursing

 

 

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Date 8/13/97

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CHILDHOOD CHRONIC ILLNESS: HEALTHY SIBLING'S
PERCEPTION OF FAMILY COPING

BY

Sherry Nelson

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

1997

ABSTRACT

CHILDHOOD CHRONIC ILLNESS: HEALTHY SIBLING'S
PERCEPTION OF FAMILY COPING

BY

Sherry Nelson

Chronic illness affects approximately 10 million
children under the age of 18 in the United States. An
exploratory descriptive research design was used to gain
insight into the healthy siblings' perception of family
coping strategies in families with a chronically ill child.
A comparison group of children without a chronically ill
sibling was employed to increase the validity of the
findings. Family coping strategies were measured by use of
the Family Crisis Oriented Personal Evaluation Scales (F-
COPES) instrument (McCubbin, Olson & Larsen, 1981).

Statistical significance was reached on one of the F-
COPES sub-scales; Seeking Spiritual Support (pg.05). This
finding is consistent with anecdotal evidence that families
of children with chronic illness frequently seek deeper
meaning from the experience. The remainder of the sub-
scales and the total scale values did not reach
significance. This would support the conclusion that there
are minimal differences in the overall coping strategies of
families regardless of the presence of a child with a

chronic illness.

This thesis is dedicated to my son Daniel Nelson.

The true N=1 experimental subject.

iii

ACKNOWLEDGMENTS

I would like to thank my family first of all for their
patience, cooperation, and understanding. Without their
assistance this could not have happened. I would also like
to thank all of the members of my committee for their help.
This is especially true of my chairperson, Dr. Linda Spence.

Thanks to each of you for believing in me.

iv

TABLE OF CONTENTS

LIST OF TABLES . . . . . . . . . . . .
LIST OF FIGURES . . . . . . . . . . . .

INTRODUCTION . . .
Problem Statement .
Research Question .
Study Relevance . . . . . .
Definition of the Study Variables . . .
Theoretical Framework . . . . . . . . .
Description of the Roy Adaptation Model
Review of the Literature . . . .

Development of Childhood Coping Strategies

Family Communication . . . . . . .
Social Support . . . . . . . .
Material Resources . . . . . . . .
Ill Child's Health Status . . . .
Healthy Sibling Characteristics .
Temperament . . . . . . . . . .
Rationale for Proposed Study . . . . .
Methods . . . . . . . . . . . . . . . .
Research Design . . . . . . . . .
Sample . . . . . . . . . . . . . .
Instrument . . . . .
Validity and Reliability . .
Data Analysis . . . . . . . . . .
Limitations . . . . .
Protection of Human Rights
Results/Findings . . . . . . . . . .
Discussion . . . . . . . . . . . . .
Implications . . .
Nursing Education
Future Research

LIST OF REFERENCES

APPENDICES . . . . .

LIST OF TABLES

Table 1: Raw Score Values and Norms for F-COPES
Instrument . . . . . . .

Table 2: Frequency Analysis of F-COPES Sub-Scales

Values . . . . . . . .

Table 3: Analysis of Variance F-COPES Instrument

vi

Page

LIST OF FIGURES

Page

Figure 1: Overview of Coping Response Outcomes within
the Roy Adaptation Model . . . . . . . . . . . 9

Figure 2: Coping Strategies within the Roy Adaptation
Madel O O O O O O O O O O O O O O O O O O O O O 1 0

vii

INTRODUCTION

Chronic illness affects approximately 10 million
children or nearly 10% of the United States population under
the age of eighteen. The growth of this population has been
attributed to advances in technology which have made it
possible for an increased number of children to survive
previous life-threatening illnesses and premature births
(Sharkey, 1995). Each member of the family is impacted in
some way by the initial diagnosis and on-going management of
the chronic illness. Unique demands are placed on the
family as a unit that are not found in families whose
children do not have chronic illnesses. Child care
concerns, complex treatment schedules, frequent visits to
health care providers, worry and uncertainty about the
future outcome of the chronically ill child are but a few of
the demands experienced by the family as a whole.

Individual family members also have increased demands
as a consequence of the chronic illness. Working parents
may be required to rearrange work schedules, utilize family
leave or maintain an undesirable position in order to keep
health care benefits. Treatments, medications, or special
health care services for the chronically ill child place
increased costs on an already stretched budget. Families
with one working parent may feel compelled to have the
unemployed parent return to or begin employment to meet the

added expenses. These financial demands may limit the

2
family members' ability to enjoy leisure or recreational
activities. Vacations, when taken, may need to be modified
in order to meet the unique needs of the ill child.

Healthy siblings also experience heightened demands in
a family with a chronically ill child as there may be an
increase in the number or type of responsibilities placed
upon or assumed by the well children. Furthermore, some
families may experience disruptions in parent-child
communication, scapegoating, overprotection of the ill
child, formation of family coalitions, increased intrafamily
tensions, or hostility. In addition, some children
experience stigma from peers or others in the community
(Gallo, Breitmayer, Knafl & Zoeller, 1991).

In most families, siblings share a common cultural
background as well as their parents' affection, time,
interest, and love. Within the sibling relationship,
children can practice a wide range of nurturing behaviors
with one another: mentor, protector, supporter, comforter,
socializer and educator (Siemon, 1984). These roles are
often countered with feelings of rivalry, jealousy, cruelty,
deceit, betrayal and hatred (Walker, 1990). Sibling
interactions provide important affectional needs, assist in
the process of socialization, aid in identity formation, and
act as an intermediary between the parents and the other
siblings (Gallo, 1988). Siblings use their intense
interactions to resolve conflicts, to learn socialization

skills, and to compare and define themselves (Gallo, 1988).

3
Play and conflict between siblings increase mutual
understanding and provide an important context for learning
social roles and rules (Dunn, 1985).

For a number of years, researchers have examined the
impact of childhood chronic illness on the family. Research
in the late 1950s into the early 19705 focused on either the
ill child or the ill child's mother. Early studies that
included sibling response to chronic illness were frequently
concerned with a specific crisis point associated with the
illness such as the initial diagnosis, or death of the
chronically ill sibling. Many early studies approached the
topic from the perspective that the chronic illness leads to
negative psychological or behavioral consequences for the
well siblings (Lavigne & Ryan, 1979; Menke, 1987). In
contrast, later studies found that many siblings seemed to
derive prosocial benefits such as increased empathy and
maturity in families with a chronically ill child (Lobato,
1988). Other research studies (Tew & Laurence, 1973)
suggested that specific characteristics such as age, gender,
or family constellation might be predictive of vulnerability
or resiliency in some siblings. Nurse researchers Trahd
(1986) and Walker (1990), have recently begun to explore the
influence of childhood chronic illness on healthy siblings
and are adding important information to the current body of
knowledge regarding this complex phenomena. However, at
this time, the effects of childhood chronic illness on

siblings are inconclusive.

4

The issues regarding the effects of growing up with a
chronically ill sibling have a number of implications for
the Advanced Practice Nurse (APN) in the primary care
setting. First, the APN can identify and assess problems
that the sibling is experiencing in the family or in the
community (Ross-Alaolmolki, Heinzer, Howard & Marszal,
1995). Following a thorough evaluation, the APN can develop
a care plan to assist the siblings in coping with the
increased family demands (Ross-Alaolmolki et al., 1995).

Problem Statement

Siblings are involved in the lives of their brothers
and/or sisters over the course of their lifetime. The
process of acquiring coping strategies begins during
childhood. It appears that little is known about siblings'
perception of family coping strategies. Therefore, the
purpose of this study is to compare the perception of family
coping strategies in children with a chronically ill sibling
to a comparison group of children with a healthy sibling.

Research Question

The following research question will be asked: Are
there any significant differences in family coping
strategies reported by children with a chronically ill
sibling as compared to the children without a chronically
ill sibling?

Study Relevance
The results of this study have the potential to add

significantly to the current body of scientific knowledge.

5
First, information from this study could expand theoretical
knowledge of the types of family coping strategies
recognized by children, and specifically family coping
strategies recognized by children whose siblings have
chronic illness. The APN can also devise methods to educate
parents about typical sibling needs, fears and concerns.
Lastly, the APN can educate parents regarding the influence
of family coping strategies on the development of individual
coping strategies in children. Development of specific
nursing interventions will be based on what the findings
reveal regarding the family coping strategies identified by
children with a chronically ill sibling as compared to those
with healthy siblings. In the future, these interventions
can be evaluated through the research process to determine
their effectiveness.
Definition of the Study Variables
The independent variable in this study is the health
status of the chronically ill child. Specifically, this
study is concerned with the siblings that currently reside
with a target child who has an identified chronic illness.
Medical diagnoses included in this study are: asthma,
diabetes mellitus, cystic fibrosis, and congenital heart
defects. Each of these diagnoses requires management
through a pediatric sub-specialty clinic.
Chronic illness during childhood is defined by Stein
and Jessop (1994) as "a condition that lasted or was certain

to last at least 3 months or had necessitated a period of

6

hospitalization of 1 month or more in the past year". Stein
and Jessop (1982) found that children with chronic illnesses
and their families have many similarities in life
experiences that are different than those in families
without a chronically ill child. For the purpose of this
study, healthy siblings are defined as those who have not
been identified to have a chronic illness or developmental
disability.

Family coping strategies identified by healthy children
with and without a chronically ill sibling is also a
variable in this study. For the purpose of this study,
family coping strategies are defined as the psychological
and/or behavioral actions in response to the available
resources, demands, and definitions given to the pile-up of
demands (McCubbin, Olson & Larson, 1981). In this study,
the following types of coping strategies to be measured are:
Acquiring Social Support; Reframing; Passive Appraisal;
Mobilizing Family to Acquire and Accept Help; and Seeking
Spiritual Support.

Theoretical Framework

The theoretical framework chosen to guide this study is
the Roy Adaptation Model (RAM)(Roy, 1970). She posits that
families attempt to attain or maintain adaptation in
response to stimuli from the internal and external
environment. Roy derived many of her concepts from earlier
work by Helson in the field of physiological psychology

(Roy, 1991). Helson's work laid the foundation for the

7
concept of the adaptation level zone, which determines
whether a stimulus will elicit a positive or negative
response (Roy, 1991). In accordance with Helson's theory,
adaptation is a process of responding positively to
environmental changes (Marriner, 1986). Coping mechanisms
encompass both the innate and acquired processes that an
individual uses to regulate or process the incoming stimuli
from the environment. Since the RAM was built upon systems
and adaptation theories, it is an appropriate model to study
the adaptation of children to life in a family with a
chronically ill sibling. Families of children with chronic
illnesses are faced with numerous focal, contextual, and
residual stimuli that are not experienced by the families of
children who do not have chronic illnesses. The RAM
provides a comprehensive framework for nursing assessment of
healthy siblings within the family system.
Description of the Roy Adaptation Model

Roy describes a person as an adaptive system which both
affects and is affected by his or her environment (Roy,
1991). The recipient of nursing care may be an individual,-
a family, a group, a community, or a society (Galbreath,
1985). Each is considered as an adaptive system. The
environment is made up of the internal and external stimuli
that give input to the individual. Thus, the family is ever
changing as it attempts to adapt to a constant barrage of
in-coming stimuli (Roy, 1991). There are three classes of

stimuli that encompass a family's environment. The focal

8
stimulus is the primary focus of the family's attention and
can come from either the external or internal environment
(Roy, 1991). In families with a chronically ill child, the
focal stimuli would often be the ill child's health status.

Other stimuli present in the family's environment that
contribute to the effect of the focal stimuli are considered
contextual stimuli. Examples of contextual stimuli which
confront the healthy sibling of a child with a chronic
illness would be the age, developmental level, gender, and
birth order of the healthy child in relationship to the ill
child. Other contextual stimuli would be the family
constellation and size, communication patterns, material
resources, and the amount and type of social support. The
family's coping strategies are also a contextual stimulus
for the healthy siblings in a family with a chronically ill
child. These stimuli are in the background of the family's
attention. However, contextual stimuli influence the manner
in which the individual or family perceives and processes
the focal stimuli (Roy, 1991).

Residual stimuli are the internal and external
environmental factors whose effects are uncertain (Roy,
1991). These stimuli are often hidden deeply in the
subconscious and have an indirect effect on the persons'
perception of the focal stimulus. Temperament is a residual
stimulus that may influence healthy sibling's choice of

coping strategies. The sum effect of the focal, contextual,

9
and residual stimuli together comprise the individual or
family's adaptation level (Roy, 1991).
Coping strategies are used by the individual and family

as a control process to mediate stimuli (Figure 1).

ENVIRONMENT CONTROL ADAPTATION
PROCESSING LEVEL
Focal Stimuli Cognator Adaptive Response
Subsystem
Coping
Contextual
Stimuli
Regulator Maladaptive
Subsystem Response
Residual Stimuli Coping
Nursing Interventions Feedback

Figure 1. Overview of Coping Response Outcomes within the
Roy Adaptation Model

After processing the input through control mechanisms,
the person makes a response (Roy, 1991). These responses
are termed behaviors. Behaviors can either lead to
effective adaptation or ineffective adaptation (Roy, 1991).
These responses then feedback into the system in the form of
environmental stimuli (Roy, 1991). Within the RAM coping
mechanisms are classified into two subsystems: the
regulator subsystem and the cognator subsystem. The
regulator subsystem responds to stimuli automatically
through innate biological processes such as neural,

chemical, and hormonal fluctuation (Roy, 1991). The

10
cognator subsystem responds to stimuli or sensory inputs
through four cognitive-emotive channels: perceptual or
information processing, learning, judgment, and emotion
(Roy, 1991). The coping strategies in the cognator
subsystem are developed over an individuals lifetime, they
are learned, practiced and reinforced by use in a variety of
situations (Roy, 1991).

Behavioral responses are a result of modification by
the regulator or the cognator subsystems and can be either
adaptive or ineffective. Adaptive responses serve to
maintain or improve the person's integrity (Roy, 1991). On
the other hand, ineffective responses disrupt integrity and
can lead to maladaption (Roy, 1991).

Coping Strategies within the Roy Adaptation Model

According to Roy's theory, the sibling as an adaptive
system receives input from the environment in the form of

stimuli (Figure 2).

ENVIRONMENT COGNATOR PROCESSING
W: W:

Ill Child's Health Status Acquiring Social Support;
W11: Reframing:

Family Coping Strategies, Passive Appraisal;

Family Communication, Mobilizing Family to Acquire
Social Support, and Accept Help; and,
Material Resources Seeking Spiritual Support
Within:

Temperament

Figure 2. Coping Strategies within the Roy Adaptation Model

11

The focal stimulus is the health status of the
chronically ill child. Roy defines the focal stimulus as
the object or event that captures the family's attention
(Roy, 1991). Contextual stimuli consist of all other
stimuli that contribute to the effect of the focal stimuli
(Roy, 1991). Residual stimuli are the internal or external
environmental factors whose impact are uncertain and
unmeasurable (Roy, 1991).

Once stimuli have been received, they are processed
through the regulator and cognator subsystems (Roy, 1991).
The family then chooses one or more coping strategies in an
attempt to mediate the effects of the stimuli. Then, the
family receives feedback which allows the members to decide
whether to increase or decrease efforts to cope with the
stimuli. This study will focus on the coping strategies
used by the family as a result of processing through the
cognator subsystem (Figure 2). The cognator subsystem acts
to process information in order to assist the family to
maintain adaptation, thus promoting the integrity of the
family unit (Roy, 1991). Coping strategies that are
regulated through the regulator subsystem are not the
subject of this study as measurement would require
monitoring levels of stress hormones and neurotransmitters
which exceed the boundaries of this study.

In this study, family coping strategies identified by
healthy siblings were measured by use of the Family Crisis

Oriented Personal Evaluation Scales (F-COPES), (McCubbin,

12

Olsen, & Larsen, 1987). This instrument allowed assessment
of the child's perception of the coping strategies used by
his or her family as a result of cognator processing. As
previously described, these family coping strategies are
developed over time through learning and reinforcement.
Specifically, the coping strategies to be evaluated in this
study are as follows: 1) Acquiring Social Support; 2)
Reframing; 3) Passive Appraisal; 4) Mobilizing Family to
Acquire and Accept Help; and 5) Seeking Spiritual Support.

The goal of nursing within the RAM is to promote
adaptive responses through manipulation of the focal,
contextual, or residual stimuli that are impinging on the
client (Roy, 1991). However, the nurse is unable to
manipulate the focal stimuli for the healthy siblings which
is the chronically ill child's health status. Nor can the
nurse manipulate the residual stimuli which is the healthy
sibling's Temperament. The nurse maybe able to impact some
of the contextual stimuli such as family communication,
social support, material resources, and use of effective
family coping strategies. Other contextual stimuli
including family constellation and size, age, developmental
level, gender of sibling, and birth order are also not
amenable to nursing interventions. Therefore, the focus of
interventions for the family with a chronically ill child
will be on the modifiable contextual stimuli of family
communication patterns, social support networks, material

resources, and family coping strategies. Thus, it can be

13
seen that the RAM will guide not only assessment for this
study, but also help to identify appropriate interventions
to enhance family adaptation.
Review of the Literature

This literature review focuses on seven areas. The
first area is the development of coping strategies in
healthy children. The second area describes the impact of
family communication patterns on the well sibling in a
family with a chronically ill child. The third area
examines the effect of social support on the healthy
sibling. The fourth area explores the influence of material
resources on the adaptation of the healthy sibling. The
fifth area examines the impact of sibling chronic illness on
the well child based on the focal stimulus of the ill
child's health status. The sixth area explores the
influence of the contextual stimuli of healthy child
characteristics of age, gender, and birth order in relation
to the chronically ill sibling. The final area of review
focuses on the impact of the residual stimuli of the well
child's temperament on his or her selection and use of
coping strategies.

I J ! i 1.1:] l . E! I .

Children learn and model the coping strategies that
they observe their parents using. In a qualitative study by
Whyte (1991), denial was an adaptive coping strategy for
parents as it allowed them to block out future fears and

instead concentrate on day-to-day life. Parental coping

14
strategies identified by Ray & Ritchie (1993) which were
most helpful were those which strengthened family
relationships, and assisted in the maintenance of a hopeful
and optimistic outlook. Finding meaning in the experience
of having a child with a chronic illness was also noted by
Whyte (1991).

The coping strategies used by healthy children to
mediate daily stressors are being explored by several nurse
researchers at this time. Sorenson (1990) examined 32
healthy 8 to 11 year old children with the use of sentence
completion lists of hypothetical stressors, and a daily
journal which the children maintained over a 6 week time
period. Analysis of the sentence completion lists found
that the number of coping strategies employed per subject
ranged from 9 to 17 with a mean of 12.38. In contrast, the
analysis of the daily journals found that the total number
of coping strategies used ranged from 1 to 9, with a mean of
4.0. Sorenson reported that the discrepancy between the
scores between the two data collection methods might be
attributed to the short time span recorded in which the
children did not experience the range of stressors that were
found in the hypothetical sentence completion lists. She
found that children's coping strategies fell into 4 general
themes: 1) cognitive-intrapsychic; 2) cognitive-behavioral;
3) behavioral, and; 4) interpersonal. The coping strategy
most frequently reported by the children was that of

submission or endurance under the theme of cognitive-

15
behavioral. This finding appears to validate the work of
Ryan-Wenger (1992) which proposed that a large number of
childrens' stressors are perceived as being beyond their
capability to change.

In a study by Sorenson (1994) that compared stress and
coping between rural and suburban children via the use of
daily journals, she found that suburban boys were more
likely to employ submission as a coping strategy than were
rural boys (19.3% versus 4.51%). The rural boys used
organized activities more often as a coping resource than
the suburban boys (22.95% versus 8.48%). The rural (8.11%)
and suburban (8.38%) girls utilized problem solving
strategies more frequently than the rural (1.64%) or
suburban (4.10%) boys. Sorenson also found that all of the
children sought social support from peers outside the family
and sought their mother for social support within the
family.

In a qualitative study by Walker (1988) to investigate
coping strategies, she interviewed both the healthy siblings
of children with cancer and their parents. She then
compared the parents' perception of the siblings coping
strategies to the siblings' own report. The two groups
completely agreed on coping strategies used 22% of the time,
partially agreed 33% of the time, and disagreed 44% of the
time. This would seem to indicate that what is deemed
coping by the siblings is not always viewed the same by

parents. One possibility for the difference in perception

16
between parent and child is that the perception is altered
due to cognitive or developmental maturity. Another
possible reason for the discrepancy might be attributed to
the parents' interpretation of external behavior as opposed
to the internal responses of the siblings.
E .1 : . I'

Effective communication is a crucial component of
healthy family functioning in all families. The addition of
a child with chronic illness poses additional demands for
clear communication (Patterson, 1991). Family members often
need to utilize more problem-solving communication in order
to make treatment decisions. The family members also need
to be able to express feelings related to the diagnosis and
on-going care of the child with a chronic illness. Family
members with chronically ill children often repress negative
feelings such as grief and loss. Burton (1975) reported
that 53% of mothers either did not discuss the chronic
illness with the siblings or gave only superficial
explanations. When questioned by well siblings, both
mothers and fathers reported that they evaded answering
questions completely or accurately. Daniels et al. (1987)
used mothers reports on the Health and Daily Living Form on
a sample of 72 siblings of children with rheumatoid
arthritis. They found the highest level of sibling
adjustment problems occurred in families with lower levels
of cohesion and expressiveness. Similar findings were noted

in a study by Dyson, Edgar & Crnic (1989), that compared

17
behavior problems and social competence in well siblings of
children with developmental disabilities. In a study by
Taylor (1980), siblings were found to have an inadequate
knowledge of why their ill brother or sister looked and
behaved as they did.

There are many barriers to effective parent-child
communication in a family with a chronically ill child.
Parents are burdened with a multitude of stressors which may
tax their own coping abilities. In some families, one
parent may become overly involved in the care of the
chronically ill child to the exclusion of the other parent.
Furthermore, "the presence of added demands associated with
meeting illness-related needs calls for more problem-solving
communication" (Patterson, 1991). Denial may be one coping
strategy that is effective for the parents at the same time
that well siblings are striving to gain information. The
intrusion of well sibling questions may increase the parents
feelings of loss, grief, and despair. Many well siblings
sense these feelings and are reluctant to ask parents for
information.

W

Another important variable which impacts sibling coping
strategies is the amount of available social support.

Social support can help mediate the effects of increased
demands on the family, including the well siblings of a
chronically ill child. Specifically, social support has

been identified as a mediator of the negative impact of

18

stress on health (Tomlinson & Mitchell, 1992, p. 386).
Social support can assist in the expression of affect,
clarification of feelings, development of new problem
solving and coping strategies as well as the provision of
tangible help (Tomlinson & Mitchell, 1992). However, the
chronic illness can also create barriers to attaining and
maintaining adequate social support. For example, in a
study by Gallo et a1. (1991), they found that well siblings
overall were selective in sharing the diagnosis of the
chronic illness with others. The authors attribute this
finding to their attempt at minimizing the stigma attached
to the chronic illness. Another factor that can limit well
sibling's ability to maintain social support is decreased
leisure time which may be due to care demands of the
chronically ill child.
MateriaLResmrces

Material resources available to the family members are
variables which can influence the coping strategies of all
family members including well siblings. Level of family
income can either enable or impede the families of children
with chronic illness to procure resources which can
facilitate adaptation to the demands placed upon them
(Thompson, Curtner & O'Rear, 1994). Most communities have
very limited respite care resources available at an
affordable cost. Thompson et a1. (1994) found that family
income was significantly correlated with well sibling

functioning. In this study, well siblings from lower income

19

levels were found to be more socially withdrawn and have
more peer conflicts than those with higher income levels.
MW

Investigators have proposed that some characteristics
of the chronic illness such as etiology, prognosis, and
visibility have important ramifications for the well
sibling. Genetic transmission of a chronic illness such as
cystic fibrosis may lead to extreme levels of parental guilt
and shame (Loboto, Faust & Spirito, 1988). These feelings
may in turn affect the way the parents interact with both
the ill child and the healthy siblings. Effective sibling
adaptation has been found to occur most frequently when the
parents demonstrate a positive attitude toward the ill child
(Lynn, 1989). The perception of the illness can vary from
the extremes of irreparable loss to elevated value with
different families (Brett, 1988). These perceptions are
formed based on cultural background, personality
characteristics of the family members, understanding of the
disease, religious up-bringing as well as many other complex
and interactive variables. Families that are able to either
reduce their perception of chronic illness demands or
increase the perception of positive contributions gained
from the child's illness are more likely to maintain
adaptive functioning (Patterson, 1991). The meaning that is
attributed to the illness is especially important to assess
in young children due to their use of magical thinking and

self-blame (Brett, 1988). In addition, the meaning attached

20
to the illness also influences the type of coping strategies
utilized by the family.

Disease prognosis has been speculated by many authors
(Drotar & Crawford, 1985; Lavigne & Ryan, 1979; Taylor,
1980) to have an increased negative impact on siblings.
However, none of these studies were able to demonstrate
statistical significance based on disease severity alone.
Moreover, Tritt & Esses (1988) found that well sibling
(n=27) concerns were stable across several diagnostic
categories including diabetes mellitus, juvenile rheumatoid
arthritis, and gastrointestinal disorders. This study used
three measures to assess the siblings; the Behavior Problem
Checklist for behavioral adjustment, the Self-Appraisal
Inventory for subjective feelings, and the What I Think and
Feel Questionnaire to measure anxiety level. The authors
also employed a matched control group of children with well
siblings. They found no statistical differences in self-
concept scores between the two groups. Significant findings
of this study were that parents of ill children perceived
the siblings had more behavioral adjustment problems than
did parents of healthy children.

Several researchers have proposed that visibility of
the chronic illness can impact the well siblings (Gallo,
Breitmayer, Knafl & Zoeller, 1991; Lavigne & Ryan, 1979;
McCubbin, Nevin, Cauble, Larsen, Comeau & Patterson, 1982).
Gallo et al. (1991) investigated the effect of "courtesy

stigma" on the siblings of children with chronic illness and

21
found that siblings younger than 10 years of age were
reluctant to discuss their sibling's illness with others.
The authors thought this was related to the younger
children's inability to understand the cause of the illness.
Lavigne & Ryan (1979) investigated four groups of children
whose siblings were diagnosed with congenital heart disease,
craniofacial abnormalities, or cancer, and a control group
of children without any identifiable chronic conditions.
Statistically significant differences included an increase
in irritability and social withdrawal in the healthy
siblings of children with the more visible illnesses.

In contrast, a study by Sargent et al. (1995), found
that well siblings reported they had become more caring and
compassionate as a result of having a brother or sister with
cancer. This was noted to be especially true if the sibling
was older than the affected child. However, the younger
siblings reported that nothing good had come from the
experience of having an ill sibling. Older siblings felt
that their family had an increased level of cohesion while
the younger siblings reported no change or could not answer.

Several authors have reported statistically significant
differences between mothers' rating of sibling adaptation
and the responses of the siblings themselves (Tritt & Esses,
1988; Walker, 1988). Each of these studies found that
mothers reported more psychological and behavioral
difficulties than did the siblings. A multisite

collaborative study by Sahler et al. (1994), used parental,

22
sibling and teacher report data on a large number of
standardized instruments to assess sibling (n=254)
adjustment using a modification of the family systems theory
developed by McCubbin and colleagues. Matched controls were
obtained from various sections of national health interview
surveys. This study found that the frequency of a sibling
having an emotional or behavioral problem lasting three or
more months was 16.9% compared to 6.3% of the control group
subjects. In addition, 22.4% of the children with a
chronically ill sibling had received mental health care in
the past as compared to only 5.1% in the control group.
These findings were statistically significant. The study
then examined the prevalence of sibling distress based on
whether the emotional or behavior problem manifested before
(7.7%) or after (9.2%) the diagnosis of the chronic illness.
The baseline prevalence of children with behavioral or
emotional problems was not statistically different from that
of the control group. However, after diagnosis an
additional 9.2% of the siblings developed problems as
perceived by their parents. The most statistically
significant effect was found in the siblings who were
experiencing problems before the diagnosis. Of this group
of children, 40% were reported to have behavioral or
emotional problems of such magnitude as to be perceived as
needing mental health intervention. This compared to only
2% of the siblings who developed problems following the

diagnosis.

23
H 1!] SllJi :1 l . l'

This section discusses the findings of studies which
have examined the effect of age, gender, and birth order on
the adaptation of the healthy sibling. Gallo et a1. (1992)
examined 28 healthy siblings of children with diabetes,
chronic renal failure, juvenile rheumatoid arthritis,
asthma, systemic lupus, scleroderma, and Crohn's disease.
They used the Child Behavior Checklist (CBCL) at two data
collection sessions conducted with the parents 12 months
apart. They found that mothers of the younger siblings
reported an increased risk of behavior problems. And, both
mothers and fathers reported an increase in maladjustment in
social competence of the well siblings. Tew and Laurence
(1973) concluded that in relationship to the chronically ill
child, older sisters and younger brothers had a higher rate
of behavior problems as reported by their mothers and
teachers. The Sahler et a1. (1994) group found that younger
boys had the most intense behavioral distress.

Temperament

Hymovich (1992) defines temperament as the relatively
stable and consistent tendency of an individual to respond
to stimuli in a particular manner. In the healthy child
with a chronically ill sibling, the residual stimuli has an
effect on his or her coping strategies which is
indeterminable. Longitudinal studies which have evaluated
infant temperaments have found that temperament is

consistent over time into the school-age population (Ryan,

24
1988). It is believed by many researchers that temperament
may influence not only the types of coping strategies
utilized by the child, but also their perception of the
specific events as being stressful or not (Ryan, 1988).
However, temperament is so broad that it is poorly
predictive of behavioral coping strategies in any given
circumstance (Hymovich & Hagopian, 1992).
Rationale for Proposed Study

The literature review section focused on several focal,
contextual, and residual stimuli variables which affect well
siblings of children with chronic illness. Many of the
studies cited in the literature review are not recent, used
small samples, case studies and anecdotal reports, and
relied on maternal ratings as the only data source.
Additionally, most of the studies did not utilize a
comparison group. In the limited number of studies which
did employ a comparison group, there was a lower reported
incidence of emotional or behavioral problems. Many early
studies were designed to quantify maladaptation in the well
siblings and did not investigate the possibility of enhanced
coping strategies which could be derived by growing up with
a chronically ill brother or sister. These methodological
issues limit the applicability of the results to well
siblings today. In addition, there are few if any studies
which describe well siblings' perception of family coping

strategies within the five domains identified by McCubbin et

al.

25
'Methods

This research project is a secondary analysis of data
collected by Professors Carla Barnes, Linda Spence, and
Patty Peek, in the College of Nursing at Michigan State
University. The data were collected from 48 families, 28
With, and 19 without a chronically ill child. The original
quantitative study was designed to examine the entire
family's adaptation to the experience of living with
childhood chronic illness.
W

An exploratory descriptive design was used in this
study in order to gain as much insight as possible into the
siblings' perception of family coping strategies in children
with a chronically ill brother or sister. This approach is
appropriate to the purpose of this study since there is very
limited and conflictual information about the healthy
sibling experience (Brink & Wood, 1988). The comparison
group of children with a sibling who did not have a chronic
illness was utilized to enhance the internal validity of
this study.
Sample

The target subjects in this study were siblings of
school age (8-12 year old) children with chronic illness.
The comparison group consisted of children whose siblings
did not have a chronic illness. There were 39 families, 26
families with a child who had been diagnosed with a chronic

illness for at least one year and 13 comparison families

26
with healthy children. School-aged children are able to
define and describe their perception of their family's
coping strategies (Faux, 1991). The data on both of these
groups of children were collected as part of a larger study
of families of children with chronic illness. There were 7
families of children with asthma, 5 families of children
with congenital heart disease, 8 families of children with
cystic fibrosis, and 6 families of children with insulin-
dependent diabetes mellitus. School-aged healthy siblings
were chosen to provide the information on their perception
of family coping strategies in order to validate both the
internal and external components of their coping strategies.
The families having a child with a chronic illness were
recruited for the study during treatment in pediatric sub-
specialty clinics in the Department of Pediatrics and Human
Development at Michigan State University. The comparison
families were recruited through university, neighborhood,
and community agency announcement (Spence, 1992, p.68).
Each comparison family was matched to a selected chronic
illness family based on: age, sex, and birth order of the
chronically ill child: number of parents in the home:
approximate family size: and income level (Spence, 1992,
p.69). The sample is a non-probability sample and this
limitation is recognized. See original dissertation for a
copy of the original sample selection criteria and procedure

for recruitment.

27

Instrument

The Family Crisis Oriented Personal Evaluation Scales
(F-COPES) (McCubbin, Olson & Larsen, 1981) was the
instrument used to measure family coping strategies in this
study (Appendix B). F-COPES was designed to measure the
coping dimensions of the Double ABCX Model in which the
factors of pile-up, family resources, and perceptions are
integrated. The instrument contains 30 items scored on a 5-
point Likert-type scale with answers ranging from (1)
strongly disagree to (5) strongly agree. These questions
were developed to identify problem-solving and behavioral
strategies utilized by families who are undergoing
challenging life circumstances (McCubbin, Olson & Larsen,
1981). The measure has five sub-scales: Acquiring Social
Support; Reframing; Passive Appraisal; Mobilizing Family to
Acquire and Accept Help; and, Seeking Spiritual Support.
The Acquiring Social Support sub-scale consists of 9
questions that measures the family's ability to obtain and
utilize social support from relatives, friends and
neighbors. The Reframing sub-scale is comprised of 8
questions which measures the family's ability to redefine
problematic situations to make them less stressful. The
Passive Appraisal sub-scale has 4 questions that are used to
measure the family's ability to accept a difficult situation
by minimizing their reaction. The Mobilizing Family to
Acquire and Accept Help sub-scale contains 4 questions that

measures the family's ability to seek out and use community

28
resources. Lastly, the Seeking Spiritual Support sub-scale
has 4 questions used to measure the family's ability to
acquire spiritual support (McCubbin, Olson & Larsen, 1981).
Each of the sub-scales can be scored by adding the number
circled by the respondent for each of the items. However,
scores must be reversed (5=1, 4=2, etc.) on items 17, 26,
and 28. Reversal of these scores ensures that all items are
weighted in a positive direction for analysis and
interpretation of the results. A total F-COPES score ranges
from a low score of 30 to a high score of 150. Effective
coping in response to challenges is indicated by a higher
overall F-COPES score (McCubbin, Olson & Larsen, 1981).
y 1°i°l I E J' 1.1.!

A number of reliability and validity studies on the use
of the F-COPES instrument have established the scale as an
effective tool to assess family coping behaviors (McCubbin,
Olson & Larsen, 1981). Initially, coping strategies were
identified from the family coping literature to establish
content validity (McCubbin, Olson & Larsen, 1981). Use of a
large sample (n=2740) was employed to replicate reliability
and validity checks. A test-retest reliability study was
conducted using a sample of 150 participants. Time lapse
between the first and second test administration was 4-5
weeks. The alpha reliability of the total scale is .71
(McCubbin, Olson & Larsen, 1981). Cronbach's Alpha for the
each of the factors are as follows: Acquiring Social

Support, .84; Reframing, .82; Seeking Spiritual Support,

29
.79; Mobilizing Family to Acquire and Accept Help, .71; and
Passive Appraisal, .64.
W

The data analysis for this study involved descriptive
analysis of information obtained during the family
interviews. Demographic information regarding the age of
the siblings was included in order to examine differences in
coping strategies based on the child's cognitive and
developmental level.

For this study's purpose, the plan was to determine
whether there were significant differences between
perception of family coping strategies identified by
siblings of healthy children and siblings of chronically ill
children. Therefore, the use of ANOVA analysis was employed
to measure differences on each of the 5 sub-scales of the F-
COPES instrument.

I' 'l l'

Due to the nature of this secondary analysis study,
several assumptions must be made. First, the researcher
assumes that the procedures for recruiting subjects were
followed. Secondly, the researcher must assume that the
children responded truthfully to the questions on the F-
COPES scale. Additionally, the researcher recognizes that
the F-COPES scale was developed, designed, and tested on an
adult population which may influence the results derived

from the identified sample of children.

30
WW:

Several methods were used to ensure the protection of
human subjects in this study. The proposal was presented to
the University Committee on Research Involving Human
Subjects, Michigan State University for review and approved
(Appendix A). Secondly, the rights of human subjects were
initially protected by the University Committee on Research
Involving Human Subjects for the original study of family
adaptation to childhood chronic illness. Additionally, as a
secondary analysis study, the data for analysis has already
been translated into numeric form which will be provided to
this researcher on computer disk without any identifying
information.

Results/Findings

Data were analyzed on the 26 target siblings of
chronically ill children and compared to 13 children without
a chronically ill sibling. The chronically ill children
ranged in age from 8-12 years. Target siblings ranged in
age from 8-18 years. Eighteen of the target siblings were
older than the chronically ill child and 8 of the target
siblings were younger than the chronically ill child. Chi
square analysis of the chronic illness and comparison
families detected no statistical differences based on the
characteristics of the chronically ill child (age, sex, and
birth order), or family characteristics (number of parents,

number of children, and income) (Spence, 1992, p.69).

31

F-COPES raw scores were computed for the target
siblings and the comparison group and compared to each other
and standardized norms for adolescents (Table 1). The sub-
scale Mobilizing Family to Acquire and Accept Help scores
were very similar between the 2 groups. Scores were also
similar on the 2 sub-scales of Passive Appraisal, and
Seeking Spiritual Support. The total instrument raw scores
were again similar with a range of 55 to 117 for the target
siblings and 61 to 115 for the comparison siblings. The
sub-scale of Acquiring Social Support had a range of 17 to
38 in the target siblings and 10 to 38 in the comparison
siblings. The Reframing sub-scale had a narrower range with
higher raw score values in the comparison group with values
from 23 to 38 as compared to the target siblings scores of
14 to 39.

Mean values and standard deviations were calculated for
each of the F-COPES sub-scales and for the total F-COPES
instrument. Results of means and standard deviations are
found in Table 2. Means and standard deviations for each of
the sub-scales were similar with the exception of the
Seeking Spiritual Support sub-scale. Seeking Spiritual
Support had the highest mean value (3.34, S.D. .97) of the
sub-scales for the target siblings. Reframing was the next
highest mean value for the target siblings (3.33, S.D. .79).

The lowest mean value (2.50, SD .85) was found on the sub-

Table 1.

32

WW

 

Sub-scale

Target Siblings

Comparison Siblings

 

Range Mean SD Nornl Range Mean SD Norm
Acquiring social
support 17-38 27.88 6.44 27.28 10-38 24.58 6.93 27.28
Reframing 14-39 26.65 6.32 29.19 23-38 30.62 4.03 29.19
Seeking spiritual
support 4-19 13.35 3.89 15.00 4-20 10.69 4.35 15.00
Mobilizing family
to acquire and
accept help 5-17 10.00 3.39 10.43 5-17 9.69 3.75 10.43
Passive
appraisal 8-18 13.46 2.53 9.72 9-18 13.15 2.85 9.72
Total score 55-117 89.21 15.44 94.48 61-115 87.75 13.88 94.48

 

Table 2.

Frequency Analysis of F-COPES Sub-scales Values

 

Sub-scale

Target Siblings (n=26)

Comparison Siblings (n-13)

 

N Mean Range SD N Mean Range SD
Acquiring social
support 25 2.99 (1.89-4.22) .72 12 2.73 (1.11-4.22) .77
Reframing 26 3.33 (1.75-4.88) .79 13 3.83 (2.88-4.75) .50
Passive app 26 2.69 (2.00-4.50) .87 13 2.37 (2.25-4.50) .47
Mobilizing family
to acquire and
accept help 26 2.50 (1.25-4.25) .85 13 2.42 (1.25-4.25) .94
Seeking
spiritual
support 26 3.34 (1.00-4.75) .97 13 2.67 (1.00-5.00) 1.09
Total F-COPES 24 2.97 (2.10-3.97) .51 12 2.93 (2.17-3.97) .46

 

33
scale of Mobilizing the Family to Acquire and Accept Help
for both groups of children.

Following assessment of the mean values and standard
deviations, analysis of variance (ANOVA) procedures were
performed. ANOVA values are listed in Table 3. The results
of ANOVA were consistent with the descriptive analysis.
Statistical significance was reached on the Seeking
Spiritual Support sub-scale (pg.05). ANOVA procedures also
revealed findings that approached statistical significance
on the Reframing sub-scale (pg.07). Total coping scores
between the target and comparison groups did not reach
statistical significance. Therefore, the null hypothesis
cannot be rejected. Numerous explanations could account for
this finding. First, the null hypothesis may indeed be true
and there is no significant differences in how siblings
interpret family coping strategies in families with a
chronically ill child. Another explanation for the mixed
results is that the F-COPES sub-scales were not able to
accurately measure different constructs of coping.
Cronbach's Alpha values for the factors in this study are as
follows: Acquiring Social Support .87, Mobilizing Family to
Acquire and Accept Help .74, Reframing .68, Seeking
Spiritual Support .57, and, Passive Appraisal .48. The
Alpha value for the total scale was .71. The total scale
Alpha may indicate that the sub-scales are too interrelated
to be adequately predictive of the separate constructs of

coping that they attempted to measure.

Table 3.

34

 

 

 

Sum of Mean F F

Source DF Squares Squares Ratio Prob .
Acquiring Social Support Analysis of Variance
Between groups 6 2.4692 .4115 .7308 .6285
Within groups 30 16.8929 .5631
Total 36 19.3620
Refraning Analysis of Variance
Between groups 6 5.9895 .9982 2.1619 .0731
Within groups 32 14.7758 .4617
Total 38 20.7652
Passive Appraisal Analysis of Variance
Between groups 6 4.0130 .6688 1.7582 .1396
Within groups 32 12.1729 .3804
Total 38 16.1859
Mobilising Family Analysis of Variance
Between groups 6 3.3158 .5526 .6994 .6520
Within groups 32 25.2835 .7901
Total 38 28.5994
Seeking Spiritual Support Analysis of Variance
Between groups 6 13.0903 2.1817 2.4483 .0462*
Within groups 32 28.5155 .8911 .8911
Total 38 41.6058
Total Instrument Analysis of Variance
Between groups 6 1.0071 .1679 .7968 .5802
Within groups 29 6.1094 .2107
Total 35 7.1165
*ps.05

Discussion

The findings of this study suggest that there are only

limited differences in family coping strategies in a family

with a chronically ill child than of those in a family that

does not have a chronically ill child.

reached on the Seeking Spiritual Support sub-scale.

Significance was

This

35
finding corresponds with anecdotal evidence that families
with chronically ill children often ask questions that seek
a purpose or meaning for the event. Family members ask,
“Why did this happen to us?" Siblings also perceived that
their families relied upon the coping strategy of reframing
as was evidenced by the near significance value (p5.07) on
the Reframing sub-scale. Anecdotally, many families report
that they have come to appreciate life and enjoy simple
pleasures more fully since the diagnosis of their child's
chronic illness. Often times, the chronic illness is viewed
as a turning point in the life of the family and that
following the diagnosis their lives have been enriched. In
contrast, the lowest sub-scale value was found in the
Mobilizing Family to Acquire and Accept Help. Two different
conclusions could be derived from this finding. First, the
low value on the scale may mean that families have
difficulty utilizing this form of coping. Numerous
explanations could account for this including lack of access
to resources, lack of appropriate resources, limited
material resources, and/or lack of knowledge regarding the
services which are available. On the other hand, the low
value on the sub-scale could indicate that siblings do not
perceive that this is an important coping strategy in their
family. Total coping was not found to be statistically
significant. The review of literature is congruent with

this finding as the existing literature has very conflicting

36

conclusions about the coping strategies and abilities of
siblings in a family with a chronically ill child.
Was

The results of this study suggest a number of
strategies for the APN to utilize while working with the
families of children with a chronic illness. The lack of
significance between the two groups in total coping is an
important finding because it can assist the primary care APN
to normalize perceived problems in these families. Parents
of chronically ill children frequently worry about the
impact of the chronic illness on all the members of the
family. The APN can accurately inform and educate concerned
parents that siblings of chronically ill children have not
been found to have more psychological problems than their
peers without a chronically ill sibling. Additionally, the
siblings of chronically ill children have been found to be
resilient to many of the stressors that accompany childhood
chronic illnesses. Nursing interventions for the family
with a chronically ill child needs to focus on the
modifiable contextual stimuli of family communication
patterns, social support networks, and material resources.
This is consistent with the RAM, the theoretical framework
that served as a guide for this study. Community resources
that assist parents to improve their parenting and
communication skills include educational workshops such as
Systematic Training for Effective Parenting (STEP), Family

Support Services division of the local intermediate school

37
district, and Child and Family Services of the local health
department. These same services can also assist parents to
develop a stronger social support network. Other community
resources for families which may serve to enhance social
support networks are the support groups for various chronic
illnesses such as the Wheezers Club for children with
asthma, camps for children with diabetes, asthma, and cystic
fibrosis. Material resources for families of children with
a chronic illness can be facilitated by the local health
department, specifically the Michigan Services for Children
with Special Health Care Needs program. Families need to be
made aware of the service and encouraged to participate. In
the managed care arena, services may be denied for pre-
existing conditions. This makes it critical that the family
be protected from devastating financial losses due to
inadequate health care insurance. There are other community
resources that are also available to the family of a child
with chronic illness. The Cystic Fibrosis Foundation,
Juvenile Diabetes Foundation, American Lung Association each
have local chapters that provide educational and financial
resources to these families.
H . E1 l'

Paradigm shifts in the health care field necessitates
changes in the education of nurses both at the undergraduate
and graduate level. First, undergraduate nurses need to be
prepared to care for an increased population of children

with chronic illnesses outside the tertiary care setting.

38
Children with chronic illnesses are managed more and more in
the primary care setting making it necessary to develop a
reciprocal working relationship with the child's family.
Developing realistic care plans which take into account the
demands on the family as a whole as well as the chronically
ill child is one part of this interaction. Discussion with
the family to establish routines that are integrated into
the family's schedule will help to enhance the life of the
entire family. Theoretical frameworks such as the Double
ABCX Model that can graphically illustrate the dynamics at
work in a family with a chronically ill child need to be
included in the undergraduate curriculum. Use of such a
model makes the assessment of family strengths as well as
concerns an important component of the care planning
process. Graduate nursing education must also be sensitive
to the changes in the health care field. The role of the
APN as a case manager for chronically ill children in the
home care as well as primary care settings are developing in
many areas of the country. The APN in this role coordinates
health care, social services care, physical therapy,
occupational therapy, speech therapy, as well as interfaces
with the school system as necessary. Graduate education
needs to include objectives that facilitate the development
of critical thinking and advanced judgment skills necessary

to assume this type of role.

39

Wasatch

Implications drawn from this study for future research
include changes in the instrument used to measure coping,
changes in the sample, and changes in the research design.
The sub-scales on the F-COPES instrument may be inadequate
to accurately measure the critical attributes of coping that
it describes. The sample size of 26 target and 13 control
siblings make it difficult to generalize the findings to the
larger population of children with chronically ill siblings.
In the future, research studies could be designed that
utilized an instrument that has been finely tuned to discern
the separate constructs of coping. A larger sample size
would also enhance future studies by making the findings
more generalizable to the population as a whole. Larger
sample size would also allow the researcher to evaluate the
influence of other variables on the coping perceptions of
siblings such as the gender of the sibling and birth order.

Alterations in the research design to include an
experimental group of siblings that undergo an intervention
is one possible approach to advancing the existing body of
knowledge on the experience of childhood chronic illness.
One type of intervention that may make a difference in the
lives of children with chronically ill siblings would be a
type of support group aimed at addressing some of their
social support needs. The opportunity for children to
interact with peers that are faced with similar

circumstances may be found to enhance their feelings of

4O
self-esteem. Other potential experimental interventions
would include a teaching group for siblings, one on one
educational sessions with siblings, and parental education
which included information regarding sibling coping
strategies. Finally, the use of a longitudinal research
design would also be useful in improving the understanding
of how siblings perceive family coping strategies over time.
One of the most significant strengths of this study was the
use of a comparison group of siblings. There is a paucity
of existing literature on childhood chronic illness that has
utilized this method of investigation.

This study does help to advance the Roy Adaptation
Model (RAM) theoretical framework. Roy's concepts of focal,
contextual, and residual stimuli were key elements in this
study. The target siblings in this study perceived that
their family relied more heavily on the Seeking Spiritual
Support domain than the comparison group. The siblings have
learned an effective method of coping with the demands
placed on them by virtue of living with a brother or sister
with a chronic illness. Unfortunately, based on the
limitations of this study, there is no way to know if the
learned coping strategies will continue to be effective for

the siblings as they mature.

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43

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APPENDIX A

 

STUDflfii

Univenm Committee on

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45

MICHIGAN STATE

U f4 I V

E R S I T Y

March 3. 1991

T0: Linda Spence_
A230 Li e Seiences
RE: IRES: 97~048
TITLE; CHILDHOOD CHRONIC ILLNESS: HEALTHY SIBLING

PERCEPTION OF FAMILY COPING STRATEGIES

REVISION REQUESTED: N/A

CATEGO

RY:

l-E
APPROVAL DATE; 03/03/97

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 appropriate.

herefore.
above.

REVISIONS:

pnosLst/
cnancss:

the UCRIHS approved this project and any reVisions listed

UCRIHS approval is valid for one calendar year, beginning with
the approval date shown above. Investigators planning to
continue a project be and one year must use the green renewal
form (enclosed with t e original agproval letter or when a
project is renewed) to seek u ate certification. There is a
maximum of four such expedite renewals possible. Investigators

wishing to continue a project beyond that time need to submit it
again or complete rev1ew.

UCRIHS must review any changes in procedures involving_human
subjects, rior to initiation of t e change. If this is done at
the time o renewal, please use the green renewal form. To
revise an approved protocol at an 0 her time during the year,
send your written request to the_ CRIHS Chair, requesting rev1sed
approval and referenCing the preject‘s IRB 0 and title. Include
in our request a description of the change and any revised

ins ruments. consent forms or advertisements that are applicable.

Should either of the followin arise during the course of the
work, investigators must noti UCRIHS promptly: (1) roblems
(unexpected Side effects, comp aints, etc.) involving uman
subjects or (2) changes in the research environment or new
information indicating greater risk to the human sub ects than
existed when the protocol was previously reviewed an approved.

If we can be of any future hel please do not hesitate to contact us

at (517)355

Sincerely,

 
  
  

id E. Wr
CRIHS Chai
DEH:bed

-2180 or FAX (517)4gi-1171.

LiS——-—

ight, Ph.
1‘

cc: Sherry Nelson

APPENDIX B

446

SUBJECT .17
DATE

F—COPES-C
DIRECTIONS

Listed below are several sentences that describe how families respond to problems
or difficulties. He want to know how well each of these sentences describes how
your family handles problems or difficulties.

Please read each sentence. Decide how true the statement is of your family. Put
an X in the correct box.

 

WHEN HE FACE PROBLEMS OR

DIFFICULTIES IN OUR VERY SORT OF NOT TRUE SORT OF VERY
FAMILY, HE RESPOND BY: UNTRUE UNTRUE OR UNTRUE TRUE TRUE

 

1. Sharing our problems with

relatives (grandparents, aunts,
uncles).

 

2. Seeking encouragement and
comfort from friends.

 

3. Knowing we have the power to
solve major problems.

 

4. Seeking information and advice
from persons in other families
who have faced the same
problems.

 

5. Seeking advice from relatives
(grandparents, aunts, uncles).

 

6. Seeking help from community
agencies and programs designed

to help families (church,school)
school).

 

7. Knowing that we have the
strength within our own family
to solve our proolems.

 

 

 

 

 

 

 

 

47

F-COPES—C

Page 2

 

HEN HE FACE PROBLEHS OR
IFPICUDTIES IN OUR

AHILY, NE RESPOND BY:

VERY
UNTRUE

SORT OF
UNTRUE

NOT TRUE
OR UNTRUE

SORT OF
TRUE

VERY
TRUE

 

8.

Receiving gifts and favors from
neighbors (food, taking in the
in nail).

 

9.

Seeking information and advice
from the family doctor.

 

10.

Asking neighbors for favors and
help.

 

11.

Facing problems directly and

trying to get solutions right
away.

 

12.

Hatching television.

 

13.

Showing that we are strong.

 

14.

Attending church services.

 

15.

Accepting stressful events as a
fact of life.

 

16.

Sharing worries with close
friends.

 

17.

Knowing luck plays a big part
in how well we are able to solve
family problems.

 

18.

Exercising with friends to stay
fit and reduce stress.

 

19.

 

Accepting that difficulties
occur without warning.

 

 

 

 

 

 

 

4&3

F-COPES-C

Page 3

 

HEN HE FACE PROBLEMS OR
IFFICULTIES IN OUR

FAMILY, HE RESPOND BY:

Liza!

UNTRUE

SORT OF
UNTRUE

NOT TRUE
OR UNTRUE

SORT OF
TRUE

VERY
TRUE

 

20.

Doing things with relatives
(dinners, get-togethers).

 

21.

Seeking professional counseling
and help for family problems.

 

22.

Believing we can handle our own
problems.

 

t3.

Participating in church
activities.

 

24.

Defining the family problem in
a more positive way so that we
do not become too discouraged.

 

25.

Asking relatives how they feel
about problems we face.

 

26.

Feeling that no matter what we
do to get ready, we will have
trouble handling problems.

 

27.

Seeking advice from a minister.

 

28.

Believing if we wait long enough
the problem will go away.

 

29o

Sharing problems with neighbors.

 

30.

 

Having faith in God.

 

 

 

 

 

 

 

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