The social and psychological effects of sickle cell disease on family functioning

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The social and psychological effects of sickle cell disease on family functioning
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Anemia, Sickle Cell -- psychology   ( mesh )
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Thesis (Ph. D.)--University of Florida, 1988.
Bibliography:
Includes bibliographical references (leaves 64-66).
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by Cynthia Cone-Dekle.
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Typescript.
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Vita.

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THE SOCIAL AND PSYCHOLOGICAL EFFECTS OF SICKLE CELL DISEASE
ON FAMILY FUNCTIONING

















By

CYNTHIA CONE-DEKLE


A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF
FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA


1988













This dissertation is dedicated to my husband, James E. Dekle, Sr.,
my children, Jamie Alesha and James Edgar, Jr., and my parents, Mr.
and Mrs. Ed Foy Cone.













ACKNOWLEDGEMENTS
The author wishes to thank all of those who have contributed
to the completion of this project.















TABLE OF CONTENTS


ACKNOWLEDGEMENTS ......................... ............. ...........

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

ABSTRACT.................. ..... ...... ...... .......................

CHAPTERS

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

An Overview of Sickle Cell Disease....................
Symptomatology of Sickle Cell Disease..................
Summary...................................... ....

2 LITERATURE REVIEW... ................. .................

The Effects of Chronic Illness on Family Functioning...
Theoretical Studies.................................
Empirical Studies..................................
Summary of Review of Literature.......................
Review Studies of SCD on Family Functioning............
Summary of Review ....................................
Rationale................. .......... .... ........

3 METHODS......................... ................

Subjects................................... .....
Materials........... ............. ...... ........ ..
Procedures.............................. .............
Statistical Procedures................................

4 RESULTS AND DISCUSSION OF FINDINGS.....................

Section One.........................................
Analysis of the Differences of Demographic Variables
Between Groups...................................
Section Two.........................................
Analysis of Impact of Illness on Family Scale (IFS)..


page

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26
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30

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Section Three........................... .......... ... 36
Analysis of Differences of Mean Scores on Parenting
Stress Index Variables (PSI)...................... 36
Section Four ....... ............................. .... 38
Analysis of Differences of Mean Scores on Marital
Satisfaction.......................... .... ...... 38
Section Five............... ........ ...... ......... 39
Analysis of Differences of Mean Scores on IPAT
Depression........................................ 39
Section Six.......... ...................... ........... 40
Analysis of Single Parent Data....................... 40
Section Seven........................................... 41
Some Additional Findings from the PSI................ 41

5 SUMMARY, DISCUSSION, RECOMMENDATIONS AND CONCLUSIONS.... 52

Summary ...... ...... ...... ...... .... ..... ...... ....... 52
Discussion.............. ......................... 56
Recommendations.and Conclusions........................ 59

APPENDIX

SIGNED CONSENT FORM .................................... 62

REFERENCES ........................ .. ............................ 64

BIOGRAPHICAL SKETCH............................................. 67













LIST OF TABLES


Table page

4-1 Mean Raw Scores for Demographics-Subject Characteristics.. 30

4-2 Summary Table of Analysis of Variance on Demographics-
Subject Characteristics Families of Sicklers, Diabetics
and Controls....................................... 31

4-3 Analysis of Variance of Demographics-Subject Characteristics
Single Parent Sicklers and Single Parent Controls..... 32

4-4 Analysis of Variance of Demographics-Subject Characteristics
Intact Families and Single Parents Combined........... 32

4-5 Mean Scores on Impact of Illness on Family Scale......... 33

4-6 A Summary of MANOVA for Intact Sickler and Diabetic
Families for IFS Variables........................... 34

4-7 Mean Raw Scores for PSI Variables....................... 36

4-8 Summary Table of MANOVA of PSI Variables................. 37

4-9 Mean Raw Scores on Locke-Wallace Marital Inventory and
Summary of ANOVA ................................... 39

4-10 Mean Scores of IPAT Depression Scale and Summary of
ANOVA.......................... ................... 39

4-11 Mean Raw Scores for Single Parents on PSI Variables...... 39

4-12 Summary of MANOVA for Single Parents on PSI Variables.... 41

4-13 Mean Scores on IPAT arid Summary of ANOVA for Single
Parents ................................... .... 41

4-14 Summary Table of MANOVA PSI Domain Scores............... 43

4-15 Summary Table of MANOVA for Single Parent Domain Scores.. 44

4-16 Parenting Stress Index Profile Sheet and Norms Normative
Group........................ ........................ 45









4-17 Parenting Stress Index Profile Sheet and Norms Sickler
Families .............................................. 46

4-18 Parenting Stress Index Profile Sheet and Norms Diabetic
Families ................................................ 47

4-19 Parenting Stress Index Profile Sheet and Norms Nonillness
Control Families....................................... 48

4-20 Parenting Stress Index Profile Sheet and Norms Sickler
Single Parent Families................................ 49

4-21 Parenting Stress Index Profile Sheet and Norms Single Parent
Nonillness Control Families............................. 50













Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

THE SOCIAL AND PSYCHOLOGICAL EFFECTS OF SICKLE CELL DISEASE
ON FAMILY FUNCTIONING

By

Cynthia Cone-Dekle

April 1988
Chairman: Eileen Fennell, Ph.D.
Major Department: Clinical and Health Psychology

Two and one-half million black Americans have sickle cell disease (SCD)

of one form or another, almost one out of every 10 blacks in America.

Doctors and health officials refer to it as "a worldwide problem," a

"pressing health problem," and the most neglected health problem in the

nation.

This study examined the impact of SCD on family functioning. Previous

researchers have offered theoretical explanations as well as empirical

evidence that chronic illnesses have a pervasive impact on the adjust-

ment and quality of life for both the family and the individual.

The research suggests that there are specific areas that the illness

may manifest its problematic properties. Chronic illness effects may

present themselves as distorted family relationships, financial problems,

marital problems, and depression in the primary caretaker.

This investigation examined the effects of SCD on (a) the family's

economic resources; (b) the family's sense of social isolation from peer

groups, relatives and friends; (c) marital satisfaction and relationship


viii









problems; and finally (d) depression as experienced by the primary caretaker.

The sample included 15 intact SCD families, 15 intact diabetic families used

as an illness control group, and 15 intact nonillness families used as a

normal control group. Information was also obtained and reported on an addi-

tional 10 families each of single parent sicklers and 10 nonillness single

parents used as controls.

Several self-report inventories were completed by the subjects includ-

ing the IPAT Depression Inventory, the Locke-Wallace Marital Satisfaction

Inventory, the Parenting Stress Index, and the Impact of Illness on Family

Scale. Data were analyzed by comparing the mean scores of the groups on

the measures and determining whether significant differences existed be-

tween groups on the hypothesized variables.

Results were somewhat inconsistent. Sickler families appeared to be

less impacted by the illness when compared to both the diabetic and non-

illness controls. Both sicklers and diabetics reported that the illness

impacted on their financial resources, but diabetics reported that the

illness further impacted on their social relationships, their marital

satisfaction,and relationship with their spouses. Also interesting was

the finding that the nonillness controls were similar to diabetics in re-

porting greater family dysfunctioning than sickler families.

The author concluded that the inconsistent results could have been due

to explanations related to coping strategies, denial of problems by families

of sicklers, unreliability of instrumentation, and varying parental expecta-

tions. In addition,.several methodological considerations were noted with

emphasis on further study in the form of epidemiological and longitudinal

research.













CHAPTER 1
INTRODUCTION


An Overview of Sickle Cell Disease

Two and one-half million black Americans have sickle cell disease

(SCD) of one form or another, which roughly estimates to approximately

one out of every ten blacks in America (Linde, 1972). These statistics

may be a conservative estimate since it is only recently that interest

in epidemiology, prevalence and prevention has increased. Doctors and

health officials call it "a world wide problem," a "pressing public

health problem," and the most neglected major health problem in the

nation (Linde, 1972).

Sickle cell anemia (SCA) is an hereditary blood disorder.

"Sickle Cell" refers to the shape of the red blood cells in the diseased

individual. Normal red blood cells are saucer-shaped, or some people

think they look like tiny donuts, kind of flat in the middle, with a

raised rim around the outside. With sickle cells, the cells are not

round and plump; instead, many of them are long and pointed or often

curved, as in the shape of a sickle.

"Anemia" means that blood does not have enough red cells or enough

hemoglobin to carry the oxygen to the body's tissues. In sickle cell,

the anemia is caused because the abberant cells are more fragile than

normal cells.

Much more common than SCA is the sickle cell trait. When a patient

is heterozygous for the disease (or has one gene for it), this person carries

the sickle cell trait. Sickle cell anemia occurs when a person carriestwo.






2

genes for it (i.e. homozygous). Neel (1951) predicted that there was a

25 percent probability of the offspring of two trait parents having the

disease. The person with the sickle cell trait can range from mild

symptoms to having virtually no symptoms at all.

The incidence of sickle cell trait has also been found in non-

Negroid ethnic groups. The trait has been found in countries bordering

the Mediterranean as well as in parts of the Middle East, most notably

among the ancient tribe of.the Veddoids (Lehmann and Cutbush, 1952,

Shukla and Solanki, 1958). Researchers have not agreed on the reason

for the trait's presence in this isolated Indian group. There is no

known evidence of contact between this group and Africans. Some

researchers have theorized that there is a common ancestor for the

Veddoids and the East African Negro who passed the gene for SCA to both.

It has been hypothesized that the sickle ceil trait had a protective

quality in regions where malaria was common in that individuals who had

the sickle cell gene did not appear to suffer from the more severe effects

of malaria. It has been suggested that the sickle cell trait may have

been passed from generation to generation because of its survival value.

An individual may have sickle cell trait and be unaware of it

unless his blood has been specifically tested for it. Other persons

with the sickle cell trait may have mild symptoms of one sort or

another, but this happens only occasionally. Another condition that

has been observed is one in which the individuals may not have any

symptoms for years, but then suddenly develop symptoms under periods

.of stress (Cerami and Washington, 1974).

Sickle cell anemia is a chronic and debilitating disease that leads

to a shortened life span. It is estimated that half of the children .who








are afflicted die before the age of twenty (Cerami and Washington,

1974). The clinical manifestation of SCA affects most systems in the

body. In discussing the clinical aspects of SCA, one important

variable is the severity of the disease. Some individuals have a

"stormy course" with many crises and complications that result in

frequent hospitalizations and an early death. Others have a more benign

form of the disease that allows them to lead more normal lives.

However, there are symptoms present which are common to most persons

who have SCD.

Symptomatology of Sickle Cell Disease

The most universal symptom of SCD is anemia. The degree of anemia

varies from patient to patient and ranges from moderate to severe. The

anemia of SCD is a result of the rapid destruction of sickled red blood

cells. The life span of a red cell containing sickle hemoglobin

(Hemoglobin S) is 30 days, less than a third that of the 120-day life

span of normal red cells.

In individuals with SCD, the bone marrow which produces red cells ex-

pands drastically to keep up with this rapid destruction of the red cells.

People with SCD produce seven to ten times the normal number of red

blood cells. Consequently, every hollow bone in the body is utilized

for red cells production. Because of the rapid destruction of these

sickled red cells the muscle and other tissues of the individual

receive a reduced or marginal supply of oxygen. If the individual

exerts himself physically, he tires quickly because the muscles develop

what is termed an "oxygen debt." At that point, the muscles will

produce large amounts of lactic acid, a waste product that is thought

to be responsible for pain and muscle fatigue.









In patients with SCD, the liver is unable toaccommodate the

increased production of bilirubin. Bilirubin is the result of a

breakdown of hemoglobin into the heme and globin components. The

bilirubin that results from the breakdown of the heme molecule is a red

pigment. It is carried into the plasma noncellularr portion of the

blood) where it isexcreted into liver bile. The bile then goes into

the gallbladder where it is concentrated. Because bilirubin is not

soluble, it forms stones that can obstruct the bile ducts and lead to

gallbladder disease. With the increased production of bilirubin,

there is an increased level of bilirubin, This increase causes

jaundice, a yellow staining of the skin and whites of the eyes.

After a period of time, as a result of the anemia and sickling

process, the heart undergoes a number of changes. The most frequent

modification is an enlargement of the heart. A large number of

patients also develop functional heart murmurs. In addition, patients

with SCD frequently develop cardiac arrythmias, or irregular patterns

of heart beats.

Another common effect of the sickling process is chronic leg

ulcers. Seen mainly in young adults, these ulcers occur in the ankle

region and are slow to heal due to poor circulation.

The courseof SCD also adversely affects the urogenital system.

One of the most commonly observed aspects of this is a delay in sexual

maturation of the external genitalia and secondary characteristics such

as beard growth and breast development.

Although sickling can also affect the vascular supply to the brain,

leading to serious neurological symptoms such as vasculitis and/or

stroke, the incidence of such complications are infrequent. When






5

cerebrovascular occlusion does occur, patients exhibit the neurological

manifestations similar to those observed with other vascular lesions.

These manifestations may include drowsiness, paralysis, transistory or

permanent blindness, aphasia, and general ized convulsions.

The skeletal system is frequently affected in the course of SCD.

This is evidenced by (1) an increase in the size of the marrow

cavities, (2) the death of bones because of the blockage of blood

supply, and (3) an increased incidence of osteomyelitis, which is a

bacterial infection of the bone. A common manifestation of the

sickling is arthralgia or pain in the joint. This arthralgia is one

of the majorcomplaints of patients with this disease.

The disease manifestations described above create a chronic

destruction of the patient's organs. In addition, there are periods of

excruciating pain call "crisis". This pain is usually experienced in

the abdomen, chest and joint, and it is believed to be caused by the

entrapment of sickled cells and subsequent clogging of the capillaries

of the tissues involved. The severity of the pain varies from mild,

requiring only aspirin analgesia, to severe, which requires hospitali-

zation. Most patients average two to three crises a year (Cerami and

Washinton, 1974). A typical crisis leaves the patient in a state of

weakness and exhaustion that requires two to three weeks for full

recovery. The crises is an episode that is extremely taxing to the

emotions and finances of patient and his family (Cerami and Washington,

1974).

Summary
The course of sickle cell disease affects a variety of physical

and psychosocial processes in the identified patient. The primary





6


physical symptomatology is an anemia, which results from the sickling

of red blood cells. In addition, the bone marrow, the liver, the

skeletal system, the brain, and the muscles can be adversely affected

by the course of SCD. Finally, although the sickle cell crisis is a

physical manifestation of the disease, it is very psychologically

taxing on the family as well as the individual.













CHAPTER 2
LITERATURE REVIEW

The Effects of Chronic Illness on Family Functioning

Theoretical Studies

Theoretically, research literature has suggested that chronic

illnesses, such as sickle cell anemia, childhood diabetes, chronic

renal failure, cystic fibrosis, and their clinical manifestations have

a pervasive impact on the adjustment and quality of life for both the

family and the individual (Burton, 1975). Bruner (1966) observed that

in families of chronically ill children each family member has to

adjust its coping style in a juxtapositional fashion to the chronic

disease. He surmised that when the individual and the family can cope

and adjust to a chronic illness this brings about relief, reward, quiescence,

and equilibrium within the family system.

McCollum (1981), Debuskey (1970), and Whitten and Fischoff (1974) have

related family adjustment to the adjustment of the affected member. In their

observations, they have found that adjustment of the family has been

correlated with successful coping of the chronically ill individual.

Several categories of variables have been found to affect families

of the chronically ill. Lipowski (1970) identified three variables

which he labeled intrapersonal, environmental, and illness-related.

Intrapersonal family factors include personality of the family unit,

specific care skills, values, beliefs, emotional state and cognitive








capacity of the family. Environmental factors include presence of a

support network, access to health services and financial resources.

Illness-related factors include type of illness, degree of impairment,

meaning of the illness to the family, and stage of progression of the

illness. Charmaz (1973) outlined a three-stage progression of chronic

disease and its effect on family functioning. Stage One is "interrupted

time" when daily activities need to be adjusted to obtain a diagnosis.

Stage Two is the "time intrusion" phase when daily activities need to

be adjusted to control the effect of the disease. The illness consumes

time and energy. Stage Three is labeled "time encapsulation" during

which the family is consumed by the illness and the family is engulfed

with care management throughout the day. It is within these three

stages that maladaptive responses to the chronic illness can develop.

Healthy family functioning is expressed by some as a "complimentary

of family relationships" (Ackerman, 1966, pg. 72), which is defined as

quality of circular support, interdependence, and intimacy molded by

the need to understand and care for each other. Hallmarks of family

healthiness include affection, caring, and loyalty. The starting point

of family dysfunctioning is an inability to adapt to differences and

change on the part of family members. There is an unwillingness or

an inability to adapt to new roles due to circumstances or situations

that touch the family.

Bowen (1971). characterized healthy family functioning as freeing

one's emotions and expressiveness. Pathologic manifestations of

unhealthy family functioning masked itself as marital discordance,

triangulation and scapegoating. Triangulation and scapegoating refer









to a conflictual situation between two persons who involve a third

person. This conflictual pattern often stabilizes and becomes chronic.

Empirical Studies

The impact of chronic illness on family functioning has received

some empirical attention in the literature, although much of our

knowledge is based on theoretical suppositions and clinical intuition.

Straus and Glaser (1975) observed families over time and found that

everyday mood and interpersonal relations are affected by chronic ill-

ness. Such effects are manifested in reduced numbers of behaviors such

as visiting friends and engaging in other leisure time activities.

Financial conflicts and tensions are also engendered by increased ex-

penses stemming from medical treatment.

McCollum (1981) observed that when a child develops a threatening

illness, grief is inevitable for those who care about him. Families

grieve not only for the feared loss of the child, but also for the

loss of certain hopes and dreams for him. McCollum also observed

that parents of sick children seem destined to experience guilt to

some degree. The guilt may take the form of feeling responsible

for the illness by feeling that one gave less than ideal care, by feeling

there was neglect or delay in seeking medical advice, or guilt about

carrying a particular genetic trait.

She observed that families who experience grief and anxiety often

describe an increase of irritable feelings toward one another. Parents

may feel alienated from one another. One of the spouses may become

distant and aloof which can lead to marital disharmony.and dissatis-

faction. Usually there is another child in the family who becomes








the targetof irritability, i.e.., scapegoating, which often leads to

fleeting moments of resentment of the healthy children (McCollum,

1981).

Theclosest, most devoted couples may sense the strain, yet others

may feel like hostile strangers. The marriage becomes vulnerable, with

the threat to a child, rather than drawing them together, alienating

them from each other (McCollum, 1981).

Satterwhite (1978) surveyed families of children with chronic illness

and reported that parents experience financial problems, worries about

the future of the child, and feelings of guilt and isolation. Burton

(1975) surveyed families and found increased marital tensions and parent-

child conflicts.

Tew and Laurence (1972) found that mothers of children with spina

bifida were found to have higher "stress scores" than mothers of children

with other problems. Gayton, Friedman, Tavormina and Tucker (1982) found

that mothers of children with cystic fibrosis had higher depression

scores on the Minnesota Multiphasic Personality Inventory, compared with

"control subjects". These studies have been criticized from the stand-

point of not utilizing adequate or appropriate controls, as well as having

sampling problems. More importantly, the effects of the child's

illness from other potential causes of psychological distress were not

adequately separated (Breslau, Staruch, Mortimer, 1982). This crit-

ti`drsm. has become one of the major criticisms in the area of correlating

chronic illness in children to psychological distress in families.

Turk (1964) examined the impact of cystic fibrosis on the family.

She found that parents felt deprived of time and energy to engage in

leisure time activities for the family; time to be alone with spouse








time and energy to engage in adult activities and/or time for one-

self. Significant problems in communication between members of these

families were also observed. For example, parents were able to discuss

treatment of the sick child but were unable to communicate on other

subjects related to family functioning. This study supports the conten-

tion that chronic illness affects family functioning. However, the

author failed to utilize a control group to assess the degree of

differences between chronic illness and other types of families such as

psychological/chronic psychiatric families and/or nonillness families

to identify adaptive versus maladaptive functioning.

Maurin and Schenkel (1976) studied 20 family units of patients with

end stage renal failure. They found that minimal overt communication

occurred between all family members. In addition, there appeared to be

a withdrawal from social life into a very family-centered existence.

McMichael (1971) surveyed parents' emotional difficulties with

children who had varying severe physical handicaps. Results showed that

28 out 50 patients, or 56 percent, experienced moderately severe degrees

of anxiety and failure to adjust. Factors predisposing parents to anxiety

and emotional difficulties were severity of the physical handicap, prog-

nosis of the illness, fears concerning the child's future, family life,

fears about ultimate care of the child and the possible need for insti-

tutional care of the child. The anxieties related to the parents

themselves were fear of future pregnancies,, marital disharmonies and

separation, and parental ill health.

Breslau, Staruch, and Mortimer (1982) examined the psychological

distress of mothers of disabled children. Scores on a depression-anxiety







scale was used to describe "the unpleasant feelings of which people

are aware" and is specific to a woman's experience as a mother. The

sample consisted of 369 mothers of children with cystic fibrosis,

cerebral palsy and multiple handicaps were compared to those of

456 mothers from a randomly selected sample of families (control subjects).

Mothers of disabled children scored significantly higher than control

subjects on both indices of psychological distress. This finding

persisted even when control for mother's education, family income, and

racial composition were utilized. Type of disability, i.e., diagnostic

classification of the disabled child was unrelated to the mother's level

of psychological distress. In contrast, the disabled child's dependency

on others in daily activities had a significant effect on both measures

of psychological distress. The more dependent the child, the greater

the mother's distress. This study provided much insight into the issue

of chronic illness on family functioning. However, it is more than

likely that dependency is very much related to type of illness. The

physical characteristics of the illness probably affects to a large ex-

tent how independent or dependent a child will be from both a mental and

physical standpoint. Diagnostic classification and dependency could more

be expected to be correlated than these authors have observed.

Summary of Review of Literature

In general, when several types of classification of chronic illness

have been examined, research findings suggest that a chronic illness

affects the unique functioning of the family in which it occurs.

Distorted family relationships, financial burdens, marital discordance,

anxiety, guilt, depression, and withdrawal from friends and other support

systems have all been reported. Furthermore, these effects have been









shown to occur even when possible confounding variables such as socio-

economic status, education of mother, and racial composition of parents

are controlled for. Families are affected by the pain component of the

illness, the unpredictability of the illness, the dependency of the child,

issues related to death and dying, and the severity of the illness. One

can speculate that type of illness may be related to type of effect;

however, present research clearly supports the suggestion that a chronic

illness effects areas of family functioning and survival.

Empirical analysis of the variables that have been theorized and

hypothesized as being problematic within chronically ill families have

been limited. Previous research can be criticized for a number of weak-

nesses, including a lack of adequate control groups, both illness and

normal controls, sampling problems, and the tendency to generate from

too-small sample 'sizes. In addition, the specific variables that have

been theorized as being important have not always been operationalized

such that they can be consistently measured across studies. This limitaton

leads to possible reliability and validity problems. In the following

section, and examination of the literature on the impact of SCD on family

functioning is presented which reveals even more apparently the weak-

nesses of research in this area.

Review Studies of SCD on Family Functioning

Psychosocial effects of SCD on family functioning has received

remarkedly little investigation in the literature. The information that

is available has its basis primarily in theoretical formulations and

clinical observations and impressions (Graham etal., 1982; Vassassuer,

1977; Leavell and Ford, 1982; Whitten and Fishchoff, 1974). A review

is presented below with specific emphasis on SCD and its impact.









Whitten andFishchoff (1974) utilized clinical observations to propose

that parents of SCD children may experience several areas of concern.

These include fears about the child with respect to his ability to achieve

social and economic success, resentment of having very dependent child

whose care may frequently inconvenience them, guilt over being respons-

ible for the child's illness, and anxiety about potential early death.

There may be anger over economic problems related to frequent hospiti-

lizations, as well as feelings of embarrassment, shame, and displeasure

of the child's size.

Vassasseur (1977) noted that parents of SCD children are prone to

anxiety and fears which decrease their sense of power in confronting

the illness. Graham et al. (1982) have noted that parents of SCD children

have major problems with inferiority. They hypothesized that this may be

the case because SCD deprives parents of the opportunity to experience

a successful, early stage of development with their baby, and by so

doing, to improve their own sense of self-worth. However, the authors'

formulationand/or impressions of inferiority in parents of SCD may have

little to do with the disease process, but with what may often be a

general feeling of inferioritythat:is found in some members of the black

culture.

Feelings of blame may be present which often lead to severe

marital discord and inappropriate placement of blame (Williams, Earles

and Pack, 1983). Parents may feel that they are to blame for the child's

illness and try to overindulge their child in attempts to correct the

anemia, or they will try to cure their child with other types of remedies.

Summary of Review
The limited research available suggests that the effects of SCD on

family functioning seem to to become manifested as feelings of anger,









resentment, embarrassment, inferiority, blame and guilt experienced

by the parents. However, most of this information is based upon in-

ferences about clinical observations of these families. Unfortunately,

the lack of control groups may lead to inferences which reflect stereo-

types about the black family rather than specific effects of the illness

on family functioning. There is a limited amount of knowledge related

the normal functioning of the black family. Until more is known about

normal black functioning, one cannot adequately assess what is adaptive

or maladaptive within this culture. Furthermore, lack of this basic

information limits the degree to which one can assess the impact of

chronically ill children on the functioning of the black family.


Rationale
Despite the limitations of available research noted earlier, one

cannot dismiss the fact that have been several factors found to affect

functioning in families of chronically ill children. This study focuses

on some of these variables with specific interest in how they are mani-

fested in black families. Previous research has suggested that feelings

of guilt, anger, fear, and inferiority are problems with SCD families.

However, research in families with other types of chronic illness

indicates that the effects appear to be more confined to the areas of

financial strain, social isolation from peers and friends, marital dis-

cordance, and mild to moderate depression in the primary caretaker. Is

there such a discrepancy in the way SCD affects the family versus other

chronic illnesses? Indeed, if this is the case, treatment approaches

would need to be modified in such a way as to meet the individualized








needs of the family and the individual. Or should one assume that just

as these variables are operable in the general population of chronic

illnesses, they are also operable in SCD families. Intuitively, the

answer seems to be an unequivocal yes. However, this question has not

been systematically examined in SCD families.

In the present study, an attempt was made to examine the effects of

SCD on family functioning. The design utilized several assessment

techniques as well as employed both a diabetic and a normal control group

of families. The families were similarly matched to SCD families on

several demographic variables such as: family size, socioeconomic status,

and age of identified child. Using this methodology, major similarities

and disparities between "illness families" and normal families were more

readily assessed in terms of the impact of the illness. In addition,

results from this study will provide information specifically related

to black families in identifying and learning how they manage problems

associated with having a chronically ill child.

To summarize, this investigation examined more closely the effects

of sickle cell disease on (a) the family's economic resources, (b) the

family's sense of social isolation from peer groups and friends, (c) marital

satisfaction and related problems, and fitialiY; (d) depression as experi-

enced by the primary caretaker.

The following hypotheses were formulated and investigated by

statistical analysis of data collected for this study.

1. There will be no significant differences between families with chronic

illness due to sickle cell disease and families with chronic illness due

to diabetes in terms of the effects of the illness on the families'

economic resources as measured by the Impact of Illness on Family Scale (IFS).









2. There will be no significant differences between families of sicklers

and families of diabetics on the effects of the illness on the quality

of social relationships as measured by the IFS.

3. There will be no significant differences between the families of

sicklers and families of diabetics on the total impact of the illness

on the family as measured by the IFS.

4. There will be no significant differences between families of sicklers,

diabetics, and nonillness controls on depression of primary caretaker

as measured by the Parenting Stress Index (PSI).

5. There will be no significant differences between the illness families

and the nonillness control families on the effects of the illness on

social isolation and quality of social relationships as measured by the

PSI.

6. There will be no significant differences between illness families and

nonillness families on the effects of the illness on the quality of the

marital relationship and the relationship with spouse as measured by the

PSI.

7. There will be no significant differences between illness families and

nonilliess families on marital satisfaction as measured by the Locke-

Wallace Marital Inventory.

8. There will be no significant differences between the illness families

and the nonillness families on the effects of the illness on depression

as experienced by the primary caretaker as measured by the IPAT Depression

Inventory.














CHAPTER 3
METHODS

Subjects
The primary subjects of the study consisted of three groups of intact

families: 15 families of children with sickle cell disease, 15 families

of children with juvenile diabetes (JD) and a nonillness control group

of 15 families. The SCD families were recruited from outpatient sickle

cell clinics across Georgia and northern Florida. The juvenile diabetic

families were recruited from outpatient clinics across Georgia as well.

Normal families were recruited through local churches, auxiliaries, and

the school system. Subjects were similarly matched on variables of

socioeconomic levels, family size, age range of identified child, and

education of mother and father. It should be noted that all subjects

in both the sickler group and the nonillness control group were black,

whereas 80% of the diabetic families were white. There was no attempt

to control for racial differences since it was felt that the occurrence

of the diseases as found in different racial groups is due to natural

circumstances of which cannot be controlled.

Though they were not the primary focus of the study, additional

subjects of the study consisted of two groups of single parent

families, namely sickle cell disease and a nonillness control group.

There were 10 families in each of these groups. While attempting to

recruit 25 SCD intact families,it was observed that single parent

families made up a considerable percentage of SCD families utilizing








outpatient services. It was decided that even though data from this

sample would be the primary focus, it would provide some interesting

insights into the functioning of single parent families and possibly

allow for some comparisons to be made to intact families of chronically

ill children. All subjects in these two groups were black.

Materials
Data were collected for each sickler, diabetic, and nonillness

control family on: (1) selected stress related scales as measured by

the Parenting Stress Index (PSI); (2) depression as experienced by the

primary caretaker as measured by the IPAT Depression Inventory; and (3)

marital satisfaction and relationship with spouse as measured by the

Locke-Wallace Marital Inventory. Additional data were collected for

each sickler and diabetic family on (1) the Financial Impact scale and

the Disruption of Social Relationship Scale as measured by the Impact of

Illness on Family Scale (IFS). Data were collected on each of the single

parent sicklers and nonillness control families on selected variables:

on the PSI and (2) depression as measured by the IPAT. Following is a

description as well as psychometric data on each of the instruments used

in the study.

The Impact of Illness on Family Scale ( Stein and Jessop, 1985).

The objective of this scale is to measure the effect of the child's

condition in producing change in the family. Impact is conceptualized

as the effects of the child's illness on the family system. Four

dimensions were theorized as revelant: economic (changes in the

economic status of the family), social (the quality and quantity of

others outside of the family),familial (quality of interaction within

the family unit), and strain (subjective burden experienced by the

primary caretaker).









An item pool for each hypothesized dimension was created using

qualitative data from patient interviews, reviews of the literature and

clinical experience of providers who treat chronically ill children.

Psychometric data were used to further refine the scale and factor

analysis of the first 100 cases revealed four dimensions of impact on

the measure: financiaT,,social/familial, personal strain, and mastery.

Three of the four hypothesized dimensions were empirically demonstrated

by the factor analysis, two theorized dimensions combined in one

(familial/social), and a new one was generated (coping or mastery).

The twenty-four item scale elicited variability in response and was

internally consistent.

The construct validity of the Impact on Family Measure has been

extended with analyses of the data on 209 cases. Dataset suggest that

the Impact scale is in fact tapping the construct it was designed to

measure. Higher Total Impact on Family Scale is associated with:low

education, low family income, the presence of welfare, a mother's

perception that her child is difficult to care for, poor functioning on

the part of the child, increased number of hospitalizations and other

forms of utilization, days absent from school, poor psychological

adjustment on the part of the child, and increased psychiatric symptoms

on the part of the mother.

TheLocke-Wallace Marital Inventory Locke and Wallace, 1959). The

Locke-Wallace Marital Inventory is a 15-item questionnaire used to

measure marital adjustment. The reliability of the adjustment tested,

computed by the split-half technique and corrected by the Spearman-

Brown formula is .90 (Locke and Wallace, 1959). In examining the








validity, it was found that the test adequately differentiated

between persons who were well-adjusted and those who were maladjusted

in marriage. The sample was predominantly young native white, educated,

white collar and professional, urban group. They were predominantly

childless or had only one child. Mean length of marriage was 5.6

years for husbands and 5.3 years for wives. The mean adjustment score

for the well-adjusted group was 135.9, whereas the mean score for the

maladjusted was 71.7. Only 17 percent of the maladjusted group achieved

adjustment scores of one hundred or higher, whereas 96 percent of the

well-adjusted group achieved scores of one hundred or more.

The IPAT Depression Scale (Krug and Laughlin, 1976). The IPAT

Depression Scale is a measure used to study the physical and emotional

symptoms of depression. The IPAT is a 40-item scale. Norms are

provided for men and women together in an equally weighted combination

as well as for women separately and men separately.

Alpha coefficients for the IPAT scale range from .85 to .93.

Parallel split-half reliabilities range from .89 to .94 (Krug and

Laughlin, 1976). Validity measures showed that a correlation of .88

was obtained between the 36 item scale and pure depression factor in a

sample of 1904 normals and clinical cases. The IPAT scale also

discriminated a group of normals for a diagnosed group of depressives

with the overall meandifference yielding a t of 13.52 (df=697), which

was highly significant.

The IPAT correlates .82 with the Clinical Analysis Questionnaire. The

IPAT also correlates significantly with the depression scale on the

Minnesota Multiphasic Personality Inventory, r=.31 p < .05 level of

significance.








The norms for the Depression scale were based on slightly more

than 2,000 cases which were randomly sampled from a larger group of

nearly 3,000 cases, sampled across 10 occupational classes. The largest

single group represented in the "minority" description was black, but

sampling included American Indians, Orientals, and Spanish Americans.

However, 84.37 percent of the normative group were white and 15.7 per-

cent were non-white.

The Parenting Stress Index (PSI) (Albidin, 1983). The PSI identifies

three major source domains of stressors: (1) child characteristics,

(2) parent characteristics, and (3) situation/demographic characteristics.

With regard to the kinds of stressors identified, they ranged from

objective life events such as death of a family member to the mother's

judgment of the child's activity level, to the parent subjective feelings

of being trapped by their parenting responsibilities.

From initial development, which consisted of 150 items, several

revisions have occurred. Presently, Form six of the PSI is considered

the current form which consists of 101 items with an optional Life

Stress scale. Below is a brief description of each scale on the PSI.

Scale 1. Adaptability/Plasticity High Score = 31

Description: High scores on this scale are associated with
characteristics which make the mothering task more difficult
by virtue of the child's inability to adjust to changes in
his or her physical or social environment.

Scale 2. Adaptabiltiy of Child to Parent High Score = 17

Description: High scores are produced in this area when
the child possesses physical, intellectual and emotional
characteristics which ,do not match:the parent's hope
for the child.

Scale 3. Child Demandingness High Score = 24

Description: High scores in this area are produced when
parent experiences the child as placing demands upon him/her.








Scale 4. Child Distractability/Hyperactivity High Score = 31

Description: High scores on this subscale appear to
be associated with children who display many of the
behaviors found in the Attention Deficit Disorder
with Hyperactivity as described by the DSM III.

Scale 5. Child Reinforces Parent High Score = 12

Description: The parent who earns high scores does not
experience her child as a source of positive reinforcement.
The interactions between parent and child fail to produce
good feelings by the parent about the child.

Scale 6. Parent Attachment High Score = 16

Description: High scores suggest that parent does not
feel a sense of emotional closeness to the child. In
addition, high scores suggest the parent's real or
perceived inability to accurately read and understand
the child's feelings and/or needs.

Scale 7. Restrictions Imposed by Parental Role High Score = 26

Description: High scores suggest that parents involved
experience the parental role as restricting their
freedom and frustrating in their attempts to maintain
their own identity.

Scale 8: Parent's Sense of Competence High Score = 37

Description: High scores suggest parents who are lacking
in knowledge of child development or who possesses limited
range of child management skills. Also high scores will
be found among parents who do not find the role of parent
as reinforcing as they had expected.

Scale 9. Social Isolation High Score = 18

Description: High scores are suggestive of parents who
are socially isolated from other peers, relatives, and
other emotional support systems. In many instances
their relationships with their spouses are distant and
lacking in support for their efforts as parents.

Scale 10: Relationship with Spouse High Score = 23

Description: Parents who earn high scores are those
who are lacking the emotional and active support of
the other parent in the area of child management.









Scale 11. Parental Health High Score = 16

Description: High scores are suggestive of deterioration in
parental health which may either be the result of stress
or an additional stressor in the parent-child system.

Scale 12. Child Characteristics Domain High Score = 122

Description: High scores are associated with children who display
qualities which make it difficult for parents to fulfill
their parenting roles. When this scale is elevated in
relation to the other domains, the suggestion exists that
certain characteristics of the child are major factors in
contributing to the overall stress in the parent-child
system.

Scale 13. Parent Characteristic Domain High Score = 153

Description: High scores suggest that the sources of
stress and potential dysfunction of the parent-child
system may be related to dimensions of the parent's
functioning.

Scale 14. Total Score High Score = 260+

Description: High scores suggest a parent child system
which is under stress and at risk for the development
of dysfunctional parenting behaviors or behavior pro-
blems in the child involved.

Normal Range for Total Score 180-250

Description: Normal range of the total score is approxi-
mately the 15th to the 80th percentile. It is possible
for parents-to earn a total score within this span and
yet earn a domain score which falls in the critical
range either above or below normal range.

Extremely Low Total Score 175

Description: Type I false negative: Some parents who
earned extremely low scores tend to be very defensive,
tearful, and mildly paranoid. Often these parents
react as to say, "If I admit I have problems, I will
fall apart and be overwhelmed." Type II false negative:
These are individuals with little investment in the
role of parenting. Typically they are minimally in-
volved with their children.

Validity studies of the instrument have been performed by several

researchers since its development. Concurrent validty was demonstrated








in studies by Lafiosca (1981), Await (1981), and Casey (1983).

Discriminant validity was demonstrated in studies performed by Zimmerman

(1979), Greenberg (1983), and Saviano (1981).

Reliability coefficients were determined for each subscale, each

domain, and each total score. The reliability of coefficients were

computed on responses of the sample of 534. Coefficients ranged in

magnitude from .62 to .70 for the subscales of the child domain and from

.55 to .80 for the subscales of the parent domain. The reliability

coefficient for total stress scores was .95.

The stability of the PSI scales was supported by test-retest

reliability obtained from a study by Burke (1978). The PSI was administered

to 15 mothers visiting a well-care pediatric clinic. The PSI was again

administered three weeks later. A Spearman rank-order coefficient of

.817 and .706 were obtained for the child domain and parent domain

respectively (p<.01), and a strong relationship for scores across a

three-week interval.

The normative group consisted of 534 parents in a large part

from those parents visiting small pediatric clinics in Virginia.

In the normative group demographically, approximately 92 percent

were white and 6 percent were black. A wide range of incomes were

represented: approximately one-fourth of the families had total incomes

less than $10,000 and one-fourth had incomes greater than $20,000.

Educational levels were relatively high, with approximately one-third

of mothers and fathers having graduated from college or professional

school.









Procedures
All information was provided by the mothers of the chronically ill

child. Participants were told the following:

My name is Cynthia Cone-Dekle, a student at
the University of Florida. I want to learn more
about SCD (JD) and how it has affected you and
your family. I realize that this is a very sen-
sitive and personal issue, but what you share with
me today will enable me and others in this pro-
fession to help families that may be experiencing
similar problems as your family. We do not know
a lot about the effects of a chronic illness on
the family, so I decided that the best place to
learn about it was to talk with families directly.
You will be filling out several questionnaires that
will probably take about one hour and thirty minutes
of your time. Do you have any questions? I will
wait here until you have finished.

Normal participants were given the following instructions:

My name is Cynthia Cone-Dekle, a student at the
University of Florida. I have been talking with
families of children with sickle cell disease and
juvenile diabetes. They have shared with me some
of the problems they experienced as a result of
having a sick child. Now I am talking with normal
families like yours asking them similar questions
and giving them questionnaires. I would like to
compare the responses of normal families with those of
chronic illness families to see how the problems
within these two type of families differ. You will
be filling out several questionnaires that will
take approximately one hour and thirty minutes of
your time. Do you have any questions? I will wait
here until you have finished.

After the basic instructions were given, participants filled

out the questionnaires. To a brief extent, when parents completed the

questionnaires they were allowed to discuss any issues or concerns

that may have evolved as a result of the testing.

Due to institutional regulations of two clinics, a signed consent

form was required and completed by the participants. A copy of the

consent form is found in Appendix A.








Statistical Procedures
All information was hand scored by the investigator. Statistical

procedures of data were performed using the program entitled

Statistical Package for Social Sciences-X (SPSS-X) with the cooperation

of Georgia Southern College, Statesboro, Georgia. Michael Tood,

statistician served as chief consultant. By utilizing single classi-

fication analysis of variance, the investigator made the following

comparisons:

1. of the mean scores on each of the demographic variables for

families of sicklers, diabetics, and nonillness controls;

2. of the mean scores on each of the demographic variables of

single parent sicklers and nonillness controls;

3. of the mean scores on the marital satisfaction score of families

of sicklers, diabetics, and nonillness controls;

4. of the mean scores on depression of families of sicklers, diabetics,

and nonillness controls; and

5. of the mean scores on depression of single parent sicklers and

nonillness controls.

By utilizing multivariate analysis of variance, the investigator

made the following comparisons:

1. of the mean scores on the social isolation scale, the relationship

with spouse scale and the depression scale of the PSI of families of

sicklers, diabetics, and nonillness controls;

2. of the mean scores on the social isolation scale, relationship with

spouse/child's natural father, and depression scale of the PSI of

single parent sicklers and nonillness controls: and






28

3. of the mean scores on the financial impact scale, the disruption

of social relationship scale and the total impact scale on the IFS

of families of sicklers and diabetics.

In order to determine whether significant differences occurred, F

ratios were required to be significant at the .05 level of confidence.

Where significant F ratios were found, the t-test of independent means

was used to determine where the significance existed internally. The

.05 level of confidence was used to determine the existence of significant

differences.















CHAPTER 4
RESULTS AND DISCUSSION OF FINDINGS

This chapter is divided into seven main sections. The first

section presents the results of the differences in demographic variables

for intact families of sicklers, diabetics, and nonillness controls, as

well as for single parent sicklers and single parent nonillness controls.

The second section includes the results of differences of (a) IFS scales

Financial Impact and Disruption of Social Relationships for families of

sicklers and diabetics and (b) the results of a comparison of the IFS

Total Impact mean scores for families of sicklers and diabetics, and

the standardization group. The third section of this chapter includes

results of differences in PSI variables Social Isolation, Relationship

with Spouse, and Depression for families of sicklers, diabetics, and non-

illness controls. Section four includes the results of differences in

marital satisfaction as measured by the Locke-Wallace Marital Inventory

for families of sicklers, diabetics, and nonillness controls. The fifth

section includes the results of differences on the IPAT Depression

Inventory for families of sicklers, diabetics, and nonillness controls.

The sixth section includes the results of differences in the analysis

of selected variables for single parent sicklers and single parent

nonillness controls. The final section includes the results of diff-

erences on data obtained from additional PSI scales for intact families

of sicklers, diabetics, nonillness controls, and single parent sicklers

and single parent nonillness controls. It should be noted that data

29








from section six and seven were not considered as part of the primary

study. They were included because while collecting the data of interest

these insightful findings were also obtained. The investigator decided

that these results should be reported and discussed to some extent.


Section One

Analysis of the Differences of Demographic Variables Between Groups

Analysis of demographic data was performed to determine (1)

whether the groups weresjhinilarly matched on the variables the

investigator was attempting to control for and (2) to determine

whether the single families and intact families were similar enough


such they they could be combined to increase the sample size.


Table


4-1 summarizes the mean raw scores and standard deviations for

demographic-subject characteristics for both the intact families and

the single parent ones.


Mean Raw Scores


Table 4-1
for Demographics-Subject Characteristics


Age of ':Income Education Education Family
Group N Child *Level **Mother **Father : Size


Sicklers 15 6.7 17.4 .667 .933 4.7
S.D. 2.49 9.11 .488 .258 1.52

Diabetics 15 6.4 27.3 .867 .800 4.7
S.D. 2.19 17.8 .352 .414 1.11

Normals 15 6.7 18.9 1.00 .800 4.8
S.D. 2.25 10.4 0.0 .414 1.14

Sicklers 10 6.4 7.9 .800 .900 3.6
S.D. 2.67 1.28 .422 .316 1.71

Normals 10 6.1 10.7 1.00 1.00 3.2
S.D. 2.76 5.43 0.0 0.0 .91

*measured by the thousandth
**raw scores tabulated as: 0=non-high school graduate
1=high school graduate








Using a single classification ANOVA, an analysis of significant

differences between intact families was performed. Analysis revealed

significant differences F(2,44)=3.500 P<.03 between sicklers, diabetics,

and controls on the variable of education of mother. Table 4-2

summarizes these results.

Table 4-2
Summary Table of Analysis of Variance on Demographics-
Subject Characteristics
Families of Sicklers, Diabetics and Controls

Variable F-Value Significance of F


age of child .081 .923

income 2.411 .102

education of mother 3.500 .039

education of father .651 .527

family size .431 .653


Further analysis was performed to determine where the significance

existed internally. A t-test of independent means revealed that

significant effects of education were seen between diabetic mothers

and sickler mothers t (28) = 2.125 p<.05 and between the nonillness

control mothers and sickler mothers t (28) = 3.333 p<.05. There

were no significant effects of education between diabetic mothers

and nonillness control mothers. The results indicated that diabetic

and nonillness control mothers were more likely to have at least a

high school education when compared to the sickler mothers.

Using a single classification ANOVA, an analysis of significant

differences between single parent families was performed. Table 4-3

displays these results.









Table 4-3
Analysis of Variance of Demographics-Subject Charcteristics
Single Parent Sicklers and Single Parent Controls


Variable Value of F Significance of F


age of child .106 .748

income .200 .660

education of mother 2.250 .151

education of father 1.000 .331

family size 1.038 .322


No differences in demographic variables were observed in this comparison.

In order to determine whether the intact sickler family group and

the single parent sickler family group could be combined in order to

increase the sample size, an analysis of significant differences between

all groups combined was performed. Table 4-4 summarizes these results.

Table 4-4
Analysis of Variance of Demographic-Subject Characteristics
Intact Families and SingleParents Combined

Variable N Value of F Significance of F


age of child 65 .114 .976

income 65 5.044 .001

education of mother 65 2.446 .056

education of father 65 .864 .491

family size 65 4.584 .003


The analysis revealed significant effects were observed on the

variables of income, F (4,64) = 5.044 p<.001, Education of mother

F (4,64) = 2.446 p< .05, and Family Size, F (4,64) = 4.584 p<.003,.









From the preceding results, the experimenter concluded that the

results for the groups would be best analyzed and reported separately

due to the dissimilarity of the groups on three of the demographic

variables.


Section Two


Analysis of Impact of Illness on Family Scale (IFS)

The Impact of Family scale was used to examine the effects of

the illness on the family's economic resources, social relationships,

and to some degree assess the overall level of stress and dysfunctioning

within the family. The IFS was only appropriate with families of sicklers

and diabetics or only the illness groups. Table 4-5 summarizes the mean

scores on the IFS for the diabetic and sickler families.

Table 4-5
Mean Scores on Impact of Illness on Family Scale

Total Financial General Disruption
Group Impact Impact Impact Social Coping


sicklers 44.8 6.73 23.6 18.3 7.93
S.D. 4.97 .884 2.92 2.66 1.71

diabetics 45.3 7.07 24.7 21.6 8.53
S.D. 4.11 .884 2.06 3.66 1.24

Normative
sample* 48.03 7.70 25.45 20.8 7.90
S.D. 8.20 1.77 4.85 4.13 1.51

*this group included for further comparisons

The first variable under scrutinization was the effect of the illness

families' economic resources, thus the Financial Impact scale was used.

The following hypothesis was formulated: There will be no significant









differences between sicklers and diabetics on family's economic resources

as measured by the IFS. Table 4-6 summarizes the statistical relation-

ship between the groups.


Table 4-6
A Summary of MANOVA for Intact Sickler and Diabetic Families
for IFS Variables

Scale N F-Value Significance of F


Total score 30 .078 .781

Financial Impact 30 1.067 .310

General Impact 30 1.831 .187

Disruptions/Social
Relationships 30 8.143 .008

Coping 30 1.206 .281


A multivariate analysis of variance revealed no significant

differences between the groups in terms of impact of illness on financial

resources. Since the analysis of variance on the factor of financial

impact failed to exceed the critical value required for significance,

the null hypothesis was accepted. Further comparison of mean scores

on financial impact for families of sicklers and diabetics was achieved

by comparing them to the standardization group. Similar mean scores

were observed as seen in Table 4-6. Interpretably, the range of scores

of the present sample groups were similar to the normative group range.

Scores of this magnitude suggest that the present sample was similar to

the normative sample in reporting that the illness contributed to adverse

changes in the economic status of the family.

IFS Disruption of Social Relationship scale was the second variable

to be analyzed. The following hypothesis was formulated: There will be









no significant differences between sicklers and diabetics on quality

of social relationships as measured by the IFS. The MANOVA revealed

significant differences F (2,28) = 8.143 p< .008 between the groups in

terms of impact of illness on disruption of social patterns. Again,

these results are reflected in Table 4-6. The diabetic families re-

ported significantly more than the sicklers that the illness affected

the quality and quantity of interaction with others outside of the family

in that there were fewer in number and the relationships were less intense.

Since the analysis of variance on the factor of Disruption of Social
Relationships exceeded the critical value required for significance,

the null hypothesis was rejected. Again, a comparison was made between

families ofsicklers, diabetics, and the normative group on the social

isolation scale. The comparison revealed mean scores of 18.3, 21.6, and

20.8 respectively. A similar pattern emerged between all three groups,

with all three reporting the illness impacted on their social relationships

in varying degrees.

The final analysis on the IFS was an examination of the Total Impact

score. The following hypothesis was formulated: There will be no signi-

ficant differences between groups on the Total Impact scale. Again, Table

4-6 displays these results. The MANOVA revealed no significant differences

between the groups in terms of this scale. Since the analysis of variance

on this factor failed to achieve significance, the null hypothesis was

accepted. A comparison of mean scores of sicklers, diabetics and the

normative group disclosed mean scores of 44.8, 45.3, and 48.0 re-

spectively. Even though the pattern was similar in that varying







36
degrees of dysfunctioning was observed both the families of sicklers

and diabetics reported moderately lower Total Impact scores than the

normative group.


Section Three
Analysis of Differences of Mean Scores on Parenting Stress Index (PSI)

On the PSI, the scales chosen for analysis were the Depression,

Social Isolation, and Relationship with Spouse. The scales were chosen

for analysis because of their revelancy to the original research question.

Table 4-7 outlines the mean raw scores for these PSI variables for the

families of sicklers, diabetics, and nonillness controls.


Table 4-7
Mean Raw Scores of PSI Variables

Scale Sicklers Diabetics Normals


Depression 18.9 21.9 22.7
S.D. 4.33 4.73 6.17

Social Isolation 12.5 16.0 14.4
S.D. 3.92 4.29 3.98

Relationship with Spouse 15.9 18.6 21.3
S.D. 4.09 4.41 5.12


On the PSI, all three groups were used in the analysis. Analysis

of the depression scale was performed initially. The following hy-

pothesis was formulated: There will be no significant differences

between illness groups and nonillness controls on depression as measured

by the PSI. The analysis revealed no significant effects were observed

between families of sicklers, diabetics, and the nonillness controls.

Table 4-8 shows this statistical relationship between the groups.







Table 4-8
Summary Table of MANOVA of PSI Variables


Scale F-Value Significance of F


Depression 2.229 .120

Social Isolation 3.236 .050

Relationship with Spouse 5.240 .009



Given that the MANOVA on the factor of depression did not exceed the

critical value required for significance, the null hypothesis was

accepted.

The Social Isolation variable was examined next. The following

hypothesis was formulated: There will be no significant differences

between illness groups and nonillness controls on social isolation as

measured by the PSI. On the Social Isolation scale, the following results

were obtained. MANOVA revealed significant effects between the three

groups; F (2,44) = 3.236 p<.05.. This statistical relationship is

shown in Table 4-8. Further analysis using the t-test of independent

means revealed that the significant relationship occurred between

the families of sicklers and the families of diabetics,t (28) = 2.052

p<.05, and between families of sicklers and families of nonillness con-

trols, t (28)= 2.048 p<.05. There were no significant differences found

between families of diabetics and families of normal children. Sicklers

reported lower scores on social isolation than both diabetics and non-

illness controls. Since the MANOVA on the variable of Social Isolation

exceeded the critical value required for significance the null

hypothesis was rejected.

The final scale to be analyzed on the PSI was the Relationship

with spouse. The following hypothesis was formulated: There will be







no significant differences between illness groups and nonillness

controls on the Relationship with Spouse scale as measured by the

PSI. On the Relationship with Spouse scale, MANOVA indicated

significant effects were found between the groups, F (2,44) = 5.240

P<.009 as revealed in Table 4-8. T-test of independent means re-

vealed that the significant effects were found between sicklers and

normal contr.oJs, t (28) = 2.048 p<.05. No significant effects were

found between sickler families and diabetic families, nor diabetic
4.
families and normal families. In this analysis, the normal families

reported higher stress scores on this variable than both sickler and

diabetic families. Since MANOVA on the factor of Relationship with

Spouse exceeded the critical value required for significance the

null hypothesis was rejected.

Section Four

Analysis of Differences of Mean Scores of Marital Satisfaction

In order to determine marital relationship patterns, the Locke-

Wallace Marital Inventory was analyzed. The following hypothesis was

formulated: There will be no significant differences on marital

satisfaction between illness families and nonillness control families.

as measured by the Locke-Wallace Marital Inventory. Table 4-9

summarizes mean scores on the Locke-Wallace along with the statis-

tical relationship between the groups.

ANOVA revealed no significant differences were observed between

the groups. Since the ANOVA on the factor of marital satisfaction did

not exceed the critical value required for significance, the null

hypothesis was accepted.









Table 4-9
Mean Scores on Locke-Wallace Marital Inventory and Summary of ANOVA


Group Mean F-Value Significance of F


sickler 93.5 .236 .791
S.D. 20.2

diabetic 91.2
S.D. 23.2

Normal 88.0
S.D. 21.3


Section Five

Analysis of Differences of Mean Scores on IPAT Depression

The final variable to be addressed was depression of primary

caretaker as measured by the IPAT. The following hypothesis was

formulated: There will be no significant differences between illness

groups and nonillness controls on depression as measured by the IPAT.

The results of the ANOVA revealed no significant differences between

the groups. These results are summarized in Table 4-10. The depression

scores for all groups fell within normal range.

Table 4-10
Mean Scores on IFAT Depression Scale and Summary ofANOVA


Group Mean F-Value Significance of F


sickler 6.0 2.503 .094
S.D. 1.92

diabetic 7.5
S.D. 1.80

normal 6.5
S.D. 2.03








Since ANOVA on the factor of depression failed to exceed the critical

value of significance, the null hypothesis was accepted.


Section Six
Analysis of Single Parent Data

Since information obtained in this section was not considered

primary, no hypotheses were formulated. Analysis of data for single

parents included selected variables of the PSI. and the IPAT Depression

Inventory. Table 4-11 summarizes the mean scores for single parent sicklers

and controls on the PSI variables of Depression, Social Isolation, and

Relationship with Spouse.


Table 4-11
Mean Raw Scores for Single Parents on PSI Variables

Scale Sickler Control


Depression 20.9 22.8
S.D. 6.29 4.78

Social Isolation 14.4 14.6
S.D. 5.33 4.55

Relationship with Spouse 21.9 19.8
S. D. 6.22 6.25


A MANOVA of the Depression factor revealed no significant

differences between the two groups. On the variable of Social Isolation,

again no significant differences were observed between the groups.

Finally, on the variable of Relationship with Spouse/Child's Natural

Father, no significance differences were observed. It should be noted

that with single families on the PSI questionnaire, instead of using the

wording spouse, the phrase, child's natural father was inserted.









This phrasing was acceptable on the PSI. Table 4-12 summarizes

the results of the MANOVA.


Table 4-12
Summary of MANOVA for Single Parents on PSI Variables


Scale F-Value Significance of F


Depression 5.77 .457

Social Isolation .008 .929

Relationship With Child's
Father .566 .461



On the depression factor as measured by the IPAT, ANOVA revealed

no significant differences between the groups. Table 4-14 displays

the results.


Table 4-13
Mean Scores on IPAT and Summary of ANOVA for Single Parents


Group Mean F-Value Significance of F


sickler 7.6 1.236 .276
S.D. 1.71

normal 6.3
S.D. 1.49



Section Seven

Some Additional Findings from the PSI

Included in this section is information from additional PSI scales,

analysis of PSI Domain scores and a comparison of PSI percentile ranks

for all families with the standardization group. Two other subscales

on the PSI obtained significance between intact families, namely the







Parental Attachment and Sense of Competence, F (2,44) = 4.100 p<.02

and F (2,44) = 3.236 p<.05, "respectively." In terms of attachment,

t-test of independent means revealed significant differences between

families of sicklers and diabetics, t (28) = 2.400 p<.05, with sicklers

reporting the significantly higher scores. Also significant effects

were noted between nonillness controls and diabetics, 1 (28) = 2.521

p<.05, with the nonillness controls reporting the significantly higher

scores. There were no significant differences between nonillness controls

and sicklers. For both sickler families and normals their high scores

suggest that there are possible two sources of dysfunctioning: (a) the

parent does not feel a sense of emotional closeness to the child and/or

(b) the parent's real or perceived inability to accurately read and

understand the child's feelings.

T-test of independent means on the variable of Sense of Competence

revealed significant effects of the variable between the nonillness

control group and the sicklers with controls reporting the significantly

higher scores, t(38) = 2.363, p<.05. These results suggested that the

nonillness control parents are perceiving themselves as lacking in

practical child development knowledge and possessing a limited range

of child management skills. Also, high scores may be found among parents

who do not find the role of parenting reinforcing as they had expected.

There were no significant differences between diabetic families and

controls as well as between diabetic and sickler families. However,

diabetics obtained very similar mean scores as the nonillness controls

as shown by the small variation in the mean scores 33.9 and 34.1

"respectively."








For single parents, significant differences were observed on the

variables of Child Reinforces Parent, F (1,18) = 4.417 p<.03, and

Parental Attachment, F (1,18) = 5.455 p<.03. On both the Attachment

scale and Child Reinforces Parent the nonillness control group

reported significantly higher dysfunctioning scores than the sicklers.

A description of these scales can be found in the Method section.

Analysis of PSI Domain Scores
PSI Domain scores for intact family groups were compared to the

standardization sample. Interesting results were observed. An analysis

of Domain scores between groups are summarized in Table 4-14. No

significant differences were observed between mean scores of the

three groups.

Table 4-14
Summary Table of MANOVA PSI Domain Scores

Scale F-Value Significance of F


Total Domain Score 1.821 .175

Child Domain Score .843 .438

Parent Domain Score 2.966 .063



When compared to the normative group, the mean score of 124 obtained

by the nonillness control group on the child characteristic domain is

considered a high score on this measure. Similarly, the nonillness

control group obtained a Total Domain score of 269 which is also

considered a high score on this measure. These results seemed to

signify that overall even though there were no significant diff-

erences between the groups, the nonillness control family system








was reporting greater stress than the illness groups in these two

domains. Domain scores for single parents were examined next.

The statistical relationship between the Domain scores for single

parents are summarized in Table 4-15.

Table 4-15
Summary of MANOVA for Single Parent Domain Scores


Scale F-Value Significance of F


Total Domain Score .869 ,363

Child Domain Score .452 .510

Parent Domain Score 1.189 .290



The analysis failed to reveal any significant differences. Noteworthy,

however,is the nonillness control group's Total Domain score of 261

which fell within the high score range. Again, the suggestion is that

this parent-child system is more under stress and at risk compared to

the illness group.

Finally, a comparison of percentile ranks proved interesting. Table

4-16 displays percentile ranks for a normal family on the PSI. The

normal range of percentile scores as described in the manual fall

between the 15th and 80th percentile. Table 4-17 displays percentile

ranks for the intact sickler family. The range of scores fell between

35th and 90th percentile with five out of seven variables in the

child domain lying outside of the normal range. Only one out of

seven in the parent domain fell outside the normal range. Table

4-18 displays percentile ranks for intact diabetic families. The

range of scores lies between the 45th and 90th percentile. Here four









45








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out of five of the child domain scores fell outside of the normal

range. Table 4-19 displays percentile scores for intact normal con-

trol families. The range of scores fell between the 65th and 95th

percentile. Total Stress score, along with six out of seven Child

Domain scores fell outside of the normal range. This was the only

group whose Parent Domain score fell outside of the normal range.

Table 4-20 displays percentile ranks of single parent sickler families.

The range of scores were between the 45th and 85th percentile. Only one

scale fell outside of the normal range. Lastly, Table 4-21 displays

the percentile ranks for the single parent normal families. The range

of scores fell between the 65th and 95th percentile. The Total Stress

score and four of the seven variables in the child domain fell outside

of the normal rnage of percentile ranks.

Summary of percentile ranks reveals that diabetic and sickler

families are similar overall, although there may be some individual

variables which cause them to differ. The data indicated that all

the families appeared to be experiencing varying amounts of stress,

mostly related to child characteristics rather than the parenting

subsystem. An interesting finding was that in both the intact and single

parent nonillness families a similar pattern emerged, that is the

appearance of a greater dysfunctioning pattern within the family unit

compared to the illness families.













CHAPTER 5
SUMMARY, DISCUSSION, RECOMMENDATIONS AND CONCLUSIONS

Summary
This research project was designed to examine the extent to which

sickle cell disease impacted on family functioning. Selected variables

were chosen for study. Sickle cell disease families were compared to

both an illness control group as well as a nonillness group. The

design was intended to yield information on the psychosocial impact

of a chronic illness on family dynamics and relationships.

The subjects for the study were 15 sickle cell families, 15

diabetic families, and 15 nonillness control families recruited from

across southeast Georgia and north Florida. The sample consisted of

families demographically who ranged from mean incomes of 18,000 to

27,000 dollars a year, mean age of identified child of 6.4 to 6.7

years, mean family size of 4.7 children and 80 percent of mothers and

fathers high school graduates and above. The only exception was found

with sickler mothers where only 70 percent of them were high school

graduates.

Data were collected for all subjects on the variables of Social

Isolation, Depression and Relationship with Spouse by use of the

Parenting Stress Index. An additional measure of depression was

collected on the IPAT Depression Inventory. Data were collected for

all families on the Locke-Wallace Marital Inventory, a measure of







marital satisfaction. Data were collected for sickler and diabetic

families on the variables of Financial Impact, Disruption of Social

Relationships, and Total Impact of Illness by use of the Impact of

Illness on Family Scale.

The data were analyzed by use of both single classification

analysis of variance (ANOVA) and by the use of multivariate classi-

fication analysis of variance (MANOVA) to determine whether signi-

ficant differences occurred between the means, requiring F-ratios

significant at or beyond the .05 level of significance. Where signi-

ficant F ratios were found, the t-test of independent means was used

to determine where the significance existed internally.

The findings of the study are summarized as follows:

1. There were no significant differences between sickler and diabetic

families on how the illness affected their financial resources. Both

groups obtained scores in the range similar to the normative group

which when interpreted suggested that the illness had an adverse

impact on the family's economic resources. This impact was character-

ized by additional income needed and increased medical expenses in

families with chronic illness. This finding was expected and con-

sistent with previous literature.

2. There were significant differences between sickler and diabetic

families on how the illness impacted on their social relationships as

measured by the IFS. In this comparison, diabetics reported that the

illness adversely affected their social patterns more so than sicklers.

This impact was characterized by the family spending less time with

friends, parents having little desire to socialize, and plans often

having to be changed. Even though there was a significant effect noted







between the illness groups, when compared to the normative sample, similar

means were observed for all groups. Again, the indication is that both

families are affected socially, with diabetics perceiving the greater

effect.

3. There were no significant differences between sickler and diabetic

families on the way the total impact of illness was perceived. When

compared to the normative sample a similar range of scores emerged.

Impact scores of the magnitude obtained by the two groups are

associated with the mother's perception that her child is difficult to

care for, increased number of hospitalizations, mother's report that the

illness has affected her life, lack of social support, andincreased

psychiatric symptoms on the part of the mother.

4. There were no significant differences between sicklers, diabetics,

and nonillness families on the depression measure as measured by the

PSI. All groups obtained scores that fell within the normal range. These

results suggested that for the most part there was no indication of signi-

ficant depression in the mother as primary caretaker. The parent did not

find it difficult to mobilize psychic and physical energy to fulfill

parenting responsibilities. There seemed to be little dissastifaction

with self and/or life circumstances.

5. There were significant differences between sicklers, diabetics, and

nonillness families on the social isolation variable as measured by the

PSI. Both diabetics and nonillness families reported higher scores

than did sickler families. These parents reported they were socially

isolated from their peers, relatives, and other emotional support

systems. These findings were not as expected in that it was thought








that diabetic and sickler families wouldreport greater amounts of social

isolation than normal controls. Instead, greater isolation was reported

by diabetic families and normal controls.

6. There were significant differences between sickler, diabetic, and

nonillness families on the relationship with spouse variable as measured

by the PSI. As seen with the previous scale, diabetics and nonillness

controls reported significantly higher scores on this variable. These

results suggested that both .diabetics and controls are perceiving a lack

of emotional and active support of the other parent in the area of child

management. The relationship between mother and father does not appear

to be positive and there is a lack of mutual support in the child care

arena. Again, these results were somewhat unexpected in that it was

anticipated that the illness groups would obtain the higher scores

versus the nonillness group reflecting the impact of the illness on

the spousal relationship.

7. There were no significant differences between sickler, diabetic and

nonillness families on marital satisfaction as measured by the Locke-

Wallace. However, an interesting comparison emerged between mean scores

of the present sample and the standardization one. Mean scores of the

present sample were 93.5, 91.2, and 88.0. The mean adjustment score for

the well-adjusted normative group was 135.9, whereas the mean score for

the maladjusted group was 71.9. At first glance, it may seem that

all three groups in the present sample were somewhat maladjusted in

their marital relationships. However, it is more likely that due to

demographic dissimilarity of the present sample and the normative group,

the results reflect an incompatibilityof the instrument to the population

assessed.







8. There were no significant differences between sicklers, diabetics,

and nonillness controls on depression as measured by the IPAT. Primary

caretakers reported very little depression across all three groups.

'This finding is inconsistent with what has been reported in the

literature, but consistent with other instrumentation used in this study.

Discussion
The results of this investigation were somewhat surprising. What

was expected was not always supported. The study expected no differences

to emerge between illness groups (diabetics and sicklers) and that an

impact of illness would be observed on the hypothesized variables which

would be manifested by the illness groups having greater dysfunctioning

scores on the measures. This pattern seemed to hold true for diabetics,

but not for the sicklers. What was even more intriguing was that the non-

illness control group obtained higher dysfunctioning scores on two of the

selected variables than both sicklers and diabetics. Could it have been that

the normal families were just more dysfunctional than the illness families,

or, were there attributional differences in that families of sick children

attributed stressors to the illness, whereas normal families attributed

faults to members of the family system? In the Rationale section of

this paper, the investigator proposed the question of whether sickle

cell disease families were impacted differently by the disease than

has been shown for other chronic illness groups. Is the answer "yes"

or, are there other explanations that can be offered? The investigator

proposed some explanations below.

Coping Strategies. It is suspected that the family of a chronically

ill child is faced with two choices: (1) they either succumb to the

debilitating effects of the disease and risk destruction of the family


~







57
or (2) they develop a coping mechanism by which they learn to modulate

the negative effects such that they can maintain a semblance of family

,stability. It is almost akin to the idiom "adversity leads to solution,

resolution or dissolution." Evidence of this was noted not from the

questionnaire data provided in the study, but when the investigator

encouraged open discussion. Parents of SCD children spoke about a

higher power, i.e. God, and the belief that there was a reason for

their children being ill and the resulting adversities that followed.

However, their faith in this power gave them the strength and endurance

to master whatever problems that developed.

Denial. Another explanation that can be offered was also gleamed

from talking with parents in open discussion; that is parents may deny

they are having problems. They deny difficulties because admitting

problems to others might suggest they are incapable of dealing with the

illness, which may ultimately lead to feelings of guilt. Sickler parents

appeared somewhat more suspicious and wanted to know more frequently

what the information was going to be used for. They were also more

likely to change an answer from a more problematic one to what appeared

to be a less problematic one. Grier and Cobb (1969) theorized that

within the black culture, there is a built-in paranoia that developed

from a history of subjugation and cruelty. According to these authors,

this paranoia serves as an adaptive healthy defense mechanism. Through

its functioning, it allows some members of the black culture to rationalize

being "on guard" especially when confronted with real of symbolic elements

that represent the dominant society. Black individuals learn how not to

admit frailities for fear of it being used against them, as has been the






58
case many times in the past. This may account for the failure to observe

an "illness impact" on the sickle cell intact and single parent families

as had been observed among the diabetic families.

Incompatibility of Instrumentation. A third explanation, which follows

a similar theme as the one above, questions whether the concepts that were

hypothesized to differentiate groups were adequately measured and assessed.

In family research literature, there are a multitude of constructs that

are utilized, but very few have been scrutinized and concretized in

terms of operationalizing them for measurement purposes. The question

becomes are we asking the appropriate questions and even more importantly

are the instruments used adequately fitting the bill to measure what we

are trying to find out? It is the author's contention that the instrumen-

tation used in this study did not adequately address the issues and dy-

namics of the black chronically ill family experience because of their

standardization procedures and questionable validity of items chosen for

study. The instrumentation was more useful in assessing difficulties

for the diabetic families because they were similar demographically to

the standardization groups. The more similar a group is to the sample

that was used to standardized the instrument, the more likely the re-

sults will be valid and reliable.

Expectations. Parents of normal children more than like have diff-

erent expectations of their children than parents of ill children. A

chronic illness narrows the range of experiences that a child will

and can be exposed to. Given that there are less possible experiences,

there are less possible stressors. In addition, it is often the case

that black parents are less financially able to expose their children

or themselves to as many experiences as they would like to. Lack of






59
exposure to something not only can keep one from benefitting from the

advantages, but may also shield one from the possible disadvantages.

In the present study even though incomes of diabetic families

were not significantly different from the other groups, their incomes

were greater. This suggested they had more in terms of financial re-

sources and probably more able to afford the things they enjoyed. The

illness more than likely affected the physical aspects of being able

to participate in the activities they enjoyed thereby causing more stress

in the system. The expectation is that the more money one has to

his or her disposal the more fulfilling one's life can be. However, be-

cause of the presence of a chronic illness this may not have always been

the case.

For parents who have normal children they may have more dreams,

hopes, and expectations for their children as well as themselves. They

strive at a different level to achieve the goals that they have set. As

a result there is potentially greater stress that permeates various

aspects of family functioning, i.e. marital, social. This may hold

more true for normal families than illness families because the goals

and expectations havetobe viewedTrom the standpoint of coexisting with

a chronic illness.

Recommendations and Conclusions

Further research is recommended in the following areas: epidemiology,

methodology, and assessment. An epidemiological study is in order to

learn more about sickle cell families in terms of their demographical

make-up. Once more is known about the structural aspects of these

families, more appropriate and intelligent design questions can be formulated.

In terms of methodology, it appears the most appropriate design is one








where a longitudinal study is utilized. Parents talked in the open

discussion about different "stress periods" such as right after

diagnosis and during crises episodes. A longitudinal study would

allow for an assessment of critical periods and identify possible causation

factors. In the assessment area we need more normative data on black

families. How can one begin to talk about dysfunctioning within the

black family without having at least some knowledge about how normal

black families function? When instruments are used that are standardized

primarily on white middle class Anglo-Saxons, we run the risk of being

unable to generalize to the populations that are different. When this

is the case we must then question whether our results are valid and

reliable.

In this study there were several other methodological weaknesses. The

small sample size could have possibly minimized or exaggerated differences

between the groups. There were possibly inappropriate assessment

techniques used. In terms of illness variables, the author's failure

to adequately control for severity and duration of illness could have

biased the result in some particular direction. Finally, whether a

diabetic control group was an appropriate one is questionable in that

diabetes tend to have a different clinical course than SCD. Diabetes

seems to have a pervasive impact, whereas it is often only during "crises"

periods that the effects of SCD are more pronounced and remembered.

In light of the findings of the study a major implication is the

need for more research. Studies would need to employ more appropriate

control groups as well as utilizing instrumentation that has been

standardized and validated on similar populations to the ones being






61
studied. The findings tend to support that the impact of SCO on family

functioning is mostly in the economic arena. The impact in other areas

hypothesized was not as clearly delineated as what has been theorized

or shown empirically by other researchers examining other chronic

illnesses. This study did little in the way of identifying specific areas,

but did raise interesting questions as to whether the variables that have

been traditionally observed to be impacted by a chronic illness are the

same ones that are of importance for SCD families.

4i-














APPENDIX
CONSENT TO PARTICIPATE IN A STUDY EXAMINING THE PSYCHOLOGICAL
EFFECTS OF SICKLE CELL DISEASE ON FAMILY FUNCTIONING

1. You are being asked to participate in a research study involving
the effects of sickle cell disease on family functioning. The purpose of
this study is to determine the ways in which having a child with sickle
cell disease affects a family's social and psychological well-being. The
study is being conducted by Ms. Cynthia Cone-Dekle, a student at the
University of Florida. She may be contacted by telephone at .
It is hoped that the information obtained from this study will lead to a
better understanding of how families are affected by chronic illness,
and in particular by sickle cell disease, so that the special needs of
these families can be met more effectively.

2. This study will involve three different groups of families:
1) families with a child suffering from sickle cell disease; 2) families
with a child suffering from juvenile diabetes; and 3) families in which
all of the children are healthy. The information obtained from the
families of children with juvenile diabetes and the families of healthy
children will be compared with the information obtained from the families
of children with sickle cell disease to determine the ways in which these
families compare and differ.

3. Your participation in this study will consist of one interview
with the researcher during which you will be asked questions about your-
self and your family. You will be asked to complete several questionnaires.

4. There may be no direct benefit to you from participating in this
study. However, your participation in this study may eventually benefit
the families of children with chronic illnesses, particularly those
families of children with sickle cell disease, by providing information
about the special needs and problems of these families.

5. The records maintained in connection with this study will be
confidential except that they may be used in compiling statistical data
and other data in connection with the publication of the description of
the study and its results.

6. You will not receive any compensation for participating in this
study. If any injury occurs to you as the result of your participation
in the study neither Hospital nor the re-
searchers involved in the study will make any compensation for such injury.
However, the researcher involved in the study will aid you in making
appropriate arrangements for treatment of any such injuries. Further
information may be obtained from Ms. Cynthia Cone-Dekle.









7. Participation in this study is voluntary and if you refuse to
participate you will not be penalized or lose any benefits to which you
would otherwise be entitled. You may also discontinue your participation
in this study at any time without being penalized or lose any benefits
to which you would otherwise be entitled.

I hereby consent to participate in the research study described
above. I have read and understood the information contained in this con-
sent form and I have asked any questions I have of the researcher in-
volved in this study.



Witness Signature of Study Participant

t.


Date












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Charmaz, K. Time and identity: The shaping of selves of the chronically
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BIOGRAPHICAL SKETCH
Cynthia Cone-Dekle was born in Bulloch County, Georgia, in 1956

to Mr. and Mrs. Ed Foy Cone. She completed her eary education in the

Bulloch County School System. Her formal education began in 1974 at

Oglethorpe University in Atlanta, Georgia. There she majored in psy-

chology and obtained a minor in sociology. While at Oglethorpe, she

involved herself in several organizations both social and honorary. She

graduated magna cum laude from Oglethorpe in 1978. She continued her

formal training at the University of Florida at Gainesville. Her major

speciality was the area of clinical psychology. She spent a years'

internship with the Georgia Mental Health Institute with major emphasis

in child psychology.

Ms. Dekle is married and the mother of two children. Her hobbies

include sewing, reading, exotic cooking, and spending time engaging in

activities which involve promoting social change. She also enjoys

poetry writing and is a published poet.

Her membership affiliations include Who's Who Among American Colleges

and Universities, Omicron Delta Kappa, the National Association for

the Advancement of Colored People, and the Statewide Minority Advocacy

Group for Alcohol and Drug Prevention.













I certify that I have read this study and that in my opinion it
conforms to acceptable standards of scholarly presentation and is fully
adequate, in scope and quality, as a dissertation for the degree of
Doctor of Philosophy.


Eileen Fennell, Chair
Professor of Clinical and Health
Psychology
I certify that I have read this study and that in my opinion it
conforms to acceptable standards of scholarly presentation and is fully
adequate, in scope and quality, as a dissertation for the degree of
Doctor of Philosohpy.


Hugh Davr
Professor of Clinical and Health
Psychology
I certify that I have read this study and that in my opinion it
conforms to acceptable standards of scholarly presentation and is fully
adequate, in scope and quality, as a dissertation for the degree of
Doctor of Philosophy.


JameA Johnson
Prof ssor of Clinacal and Health
Psy hology
I certify that I have read this study and that in my opinion it
conforms to acceptable standards of scholarly presentation and is fully
adequate, in scope and quality, as a dissertation for the degree of
Doctor of Philosophy.


Mary PCauley1 an
Assistant Professor of Clinical and
Health Psychology







I certify that I have read this study and that in my opinion it
conforms to acceptable standards of scholarly presentation and is fully
adequate, in scope and quality, as a dissertation for the degree of
Doctor of Philosophy.


Rod McDav is
Professor of Counseling Psychology
This dissertation was submitted to the Graduate Faculty of the
College of Health Related Professions and to the Graduate School and
was accepted as partial fulfillment of the requirements for the degree
of Doctor of Philosophy.

April 1988
/ean, College of Health Related
Professions


Dean, Graduate School





































































UNIVERSITY OF FLORIDA


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