The influence of attention deficit disorder on mother's sic perception of family stress


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The influence of attention deficit disorder on mother's sic perception of family stress or, "Lady, why can't you control your child?"
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ix, 177 leaves : ill. ; 29 cm.
Cronin, Anne Francis
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Thesis (Ph. D.)--University of Florida, 1995.
Includes bibliographical references (leaves 166-176).
Statement of Responsibility:
by Anne Francis Cronin.
General Note:
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University of Florida
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All applicable rights reserved by the source institution and holding location.
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notis - AKP5585
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Copyright 1995


Anne Frances Cronin



Purpose of this Study . 1
Attention Deficit Disorder .. . 4
Characteristics of the Disorder . 4
History and Social Issues .. ... 6
Interventions and other Controversies 8
The Family and ADD . 9
Cystic Fibrosis . .. 11
History and Social Issues .. 11
Characteristics of the Disorder . 12
Interventions .... .. .. 13
The Family and CF ...... .. 15

The Social Construction of the Family ....... 17
The Mother Role .......... .. 20
Challenges to the Mother Role .. ... 22
The Resiliency Model of Family Stress 25
Pile-up of Stressors . 26
Family Vulnerability . .. 29
The Sick Role . .31
"Disease" Boundary . 31
"Treatment" Boundary . 34
Normalization ............ 36
Model of Human Occupation ............ .38
Occupational Role Analysis . 38
Environmental Press . .40
Theory Grounding this Research . .. 41

Grounded Theory and Analytic Induction 45
Rationale and Specific Aims . 46
Sampling . . 47
Instrumentation . . 53
Open Coding . .55
Labeling Factual Data . 55
Themes and Issues . .. 56
Drawing Conclusions . 57
Validity and Reliability Issues . 60
Reliability of Interviews .. .. 60
Triangulating Data . 62
Emergent Themes ........ ...... 63
Medications and social perception in ADD 63

Challenges to Mother's sense of well-being in ADD
. . 67
ADD and the Health Care System . 68
Perception of Antagonism by the Health Care
Establishment .. . 70
Adolescence and Chronic Disability 73
Siblings and Chronic Disability . 75
Special Issues and Ethical Concerns . 78

RMFSA Constructs . . 84
Family Demands. . .... 85
Family Resources . .90
Family Appraisal . .. .103
Normalization Theory . .. 115
Covering Up .... . 119
Maintaining a Routine . .. 121
Model of Human Occupation . .. .126
Environmental Analysis . 128
Volitional Analysis . ... 130
Summary . . .. 135

CONCLUSIONS .............. ... .137
Discussion .............. ........... 137
CF Findings . . 138
ADD Findings . .. 139
Implications for Theory . 142
Implications for Health Care Providers 144
Limitations of this Study . 149
Directions for Further Research .. .152
"Lady, why can't you control your child?" 154




. . 163


S. . 165




Table age

1 Integration of MOHO and RMFSA Constructs ....... .43
2 Demographic Summary ... ... 49
3 ADD Sample Summary . .... 51
4 CF Sample Summary . . 52
5 Summary of Demands . . 88
6 Summary of Social Network . 93
7 Biological and Adoptive ADD Family Incomes Compared
. . . 100
8 Biological and Adoptive ADD Demands and Resources
Compared . . 103
9 Appraisal Summary .. .. ... 105


Figure page

1 Adjustment Phase of the RMFSA . .. 27
2 The Adaptation Phase of the RMFSA . .. 32
3 Environmental Influences from MOHO . .. 42
4 Characteristics of ADD and CF Sample Compared 50
5 Comparison of ADD and CF Demands by Type .. 87
6 Distribution of Demands and Social Network .. 89
7 Social Resources Compared in ADD and CF Samples .. 92
8 Distribution of Demands: Biological and Adopted ADD
compared to CF . . 99
9 Social Networks: Biological and Adopted ADD compared to
CF . . . 102
10 Appraisal: ADD and CF Samples Compared 107
11 Appraisal: Biological and Adopted ADD compared to CF
. . 108
12 Influences on ADD Appraisal. ........... 110
13 Influences on CF Appraisal ........ .... 111

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



Anne Frances Cronin

August, 1995

Chairperson: Constance Shehan, Ph. D.
Major Department: Sociology

Maternal perceptions of stress vary in the presence of

chronic childhood conditions. Behavioral disabilities

however are expected to influence the perception of stress

differently than medical or physical disorders. This

qualitative study consists of interviews with 22 mothers of

children with attention deficit disorder (ADD), a behavioral

disorder, and 23 mothers of children with cystic fibrosis

(CF), a physical disorder. Open-ended questions explore

family demands, resources, time use, routines, concerns, and


Mothers in both groups report persistent vigilance in

the care of their children. This perceived need for

vigilance creates an undercurrent of tension in even routine

daily activity. Both groups of mothers report problems of

decreasing compliance and personal responsibility as the

child enters adolescence. Mothers in both groups report a

change in personal priorities and expectations resulting

from interaction with their child. Both groups are highly

child-focused in daily routines and leisure.

The experiences of CF mothers in this study are

consistent with research findings on other chronic

conditions. CF mothers report that their extended family

provides extensive physical and emotional support. While CF

mothers report a persistent emotional sorrow associated with

the disease, they are generally able to "normalize" their

daily routines. CF mothers describe their children and

families as "normal", and are generally positive in their


The ADD child's behavioral deviations result in social

censure of both the child and the mother. With this

condition families are not afforded the legitimacy of

"illness" or social affirmation for positive parental

performance. Thus, mothers of children with ADD have less

family support, high perception of child related demands,

and tend toward a more negative view of themselves. The

demands of ADD are not easily routinized, and few ADD

mothers are able to normalize care for their child.

Mothers of adopted children with ADD fared a little

better than the biological mothers. While the general

patterns were similar, the adoptive mothers reported more

support from their extended family and a more positive

sense of personal control. Implications for health care

professionals and future research are offered.


Purpose of this Study

The prevalence of chronic childhood conditions is

increasing as patterns of childhood morbidity and mortality

change (Woodroffe & Glickman, 1993). Advanced medical

technologies have increased survival rates and the increased

chronicity seen in children in the United States. Ten to

20% of individuals under 18 years of age in the U.S. have

chronic health conditions (Jackson & Vessey, 1992). While

there is much research pertaining to family stress and

associated with childhood disability, few studies have

included a comparison group. Although high levels of stress

have been reported, there is no comparison standard for

critical analysis of the findings. Other studies have

included a comparison group of families, but have also

lumped several disability types together. In either case it

is difficult to determine if the stresses parents report are

anomalous, similar across disabilities, or disability


Parents of children with physical disabilities and

mental retardation report high levels of stress (Cherry

1989; Crnic, Friedrich, and Greenberg 1983; Dunst, Cooper,

and Bolick 1987) which are described in the literature as

"crises." The "crises" may center on normal developmental

issues or on specific incidents like illness. The initial

response to a childhood condition is assumed to be like the

crisis type response seen in response to acute illness

(Mahon, 1992). When the disease or disability persists, it

has been demonstrated that families "normalize" the special

demands placed on them by their child's condition (Robinson,

1993; Deatrick, Knafl, & Walsh, 1988). In fact, on ordinary

stress measures, families dealing with chronic medical

problems do not differ from families without disabled

children (Walker, Van Slyke, & Newbrough, 1992; Pless,

1979). Normalization does seem to occur in obviously

medical or physical impairments, but does not seem to

reliably occur when the childhood disorder has a behavioral

manifestation. Only recently has the distinction been made

between behavioral and medical disorders in clinical

research (Bouma & Schweitzer, 1990; Donenberg & Baker,


Personal experience with children and families dealing

with both types of disabilities led the researcher to

believe that the social impact was quite different based on

the manifestation of the disorder. The purpose of this

research is to describe the relationship of the childhood

conditions known as Attention Deficit Disorder (ADD) and

Cystic Fibrosis (CF) with mothers' reports of personal and

family stress.

A qualitative approach was selected to explore and

describe the different experiences of mothers of disabled

children. Both CF and ADD are chronic. The conditions are

genetic and present at birth. This is an important

distinction because in their reports some of the mothers

sampled were not able to separate the child from the

disability. This occurred in both groups, and is clearly

presented below:

Before you began to deal with [J-.'s ADD] what were
your major concerns ? Before we began to deal with his
problems was before we had the three little kids .
it was a different life. Have your concerns [for J-.]
changed since his ADDH was identified ? J-. and the ADD
are pretty inseparable, my concerns began before the
ADD was diagnosed and remain. (AD-13)

Many of the mothers interviewed had difficulty speculating

about whether their behaviors were personal accommodations

to the disease or simply a normal part of parenting.

The premise of this study is that the childhood

behavioral deviations and social sanctions associated with

ADD limit the ability to perform and succeed as "normal."

The unpredictability and social isolation result in a higher

level of routine stress for mothers of children with ADD

than that experienced by mothers of children with CF.

Attention Deficit Disorder

Characteristics of the Disorder

ADD is a "psychiatric" disorder rather than a medical

one because it manifests in disruptive behavior. But,

unlike other disruptive behavior disorders, ADD is believed

to have a neurobiologic basis (Hechtman, 1994; Lombroso,

Pauls, & Leckman, 1994; Castellanos et al., 1994). This

disorder manifests in infancy, although it is seldom

diagnosed at this time. It includes a cluster of behavioral

deficits that may include a short attention span, poor

impulse control (including poor safety awareness),

difficulty completing tasks, high levels of motor activity,

emotional liability and poor interpersonal awareness.

ADD is problematic because its manifestation is social.

There is no single or definitive medical test to identify

ADD. It is notoriously difficult to diagnose objectively

because the clinical manifestations of the disorder are

likely to be modified by the age, culture, milieu, and

gender of the child (Aust, 1994; Tynan & Nearing, 1994;

Greenblatt, 1994; Weinberg & Brumback, 1992).

ADD is disproportionately reported in boys from upper

and middle class families (Greenblatt, 1994). There is no

reason to believe that the actual incidence is higher among

the more affluent, but rather these are the individuals with


the financial resources to pursue the diagnoses. Nearly six

times as many boys as girls are diagnosed with ADD, although

in adulthood the incidence is nearly equal in the two

genders (Biederman et al., 1994). It has been posited that

girls are significantly underdiagnosed with ADD at this time

(Biederman et al., 1994; Greenblatt, 1994).

A lack of recognition of attention deficit as a "real"

disorder is widely noted in the educational and health care

communities (Kasten, Coury, & Heron, 1992; Hunsucker, 1988;

Selekman, 1991). This is compounded by the subjective and

often inadequate testing to determine the basis of a child's

behavior problem (Halperin, 1991; Aust, 1994; Tynan &

Nearing, 1994). As Weinberg and Brumback (1992)

demonstrate, the persistent public outcry about the use of

this diagnosis as an excuse for antisocial behavior is often

justified. The inconsistencies in identification, testing,

and treatment of this disorder add to the overall public

hostility towards ADD (Shealy, 1994; Halperin, 1991;

Kasten, Coury, & Heron, 1992; Leifer, 1990).

ADDH, the most common type of the disorder, includes

high activity levels and often aggression. This disorder is

characterized by "developmentally inappropriate degrees of

inattention, impulsiveness, and hyperactivity" (DSM-III-R,

1987, p. 50). Children who have ADD without hyperactivity

are most often described as spacyy." They may have trouble

at school but are not disruptive. The hyperactive children

are the ones most likely to be labelled "bad." Because

their children are "bad," and their behavior defies all

usual parenting strategies, ADDH is expected to be

especially stress producing for primary caretakers.

History and Social Issues

ADD is the most common behavioral disorder in childhood

(Friedman & Doyal, 1992). It affects up to 20% of all

school-aged children (Shealy, 1994). The inattentive,

impulsive and sometimes hyperactive behavior seen in

children described as ADD are not new, but seem to be

increasingly dysfunctional in today's classroom settings.

In a less individualistic, information-driven society a poor

ability to work independently at tasks may not be disabling.

The aggressive and disruptive behaviors associated with ADDH

are especially socially censured.

ADD and ADD with hyperactivity (ADDH) have only

recently been described as discrete disorders (Diagnostic

and Statistical Manual of Mental Disorders: DSM-III, 1980).

Prior to 1980, there were a number of pediatric labels that

included the characteristics of ADD. The most widely used

were Minimal Brain Dysfunction and Hyperkinesis. The fact

that the diagnostic label is new leads people to believe the

condition is also new. This is not the case.

Some suggest that ADD is a socially constructed

disorder (Leifer, 1990; Illich, 1976). It is easy to see

that in an agrarian society, attentional difficulties are

unlikely to be considered disabling. In fact, even in our

industrialized society there is little acceptance of

attention deficit as a disability. This "disease" manifests

as a child's "bad" behavior. It is a common assumption that

the behavior is the result of inadequacies in the parent or

teacher. While professional evaluation can distinguish the

mismanaged child from the ADD child, the difference is not

clear to most lay people. So contentious is this issue that

recent issues of popular magazines like Newsweek and Time

have done articles on ADD.

Accepting that ADD is real does not always mean

accepting that the medical approach to intervention. So

what if persons with ADD think and react in totally

different ways than the mainstream? Why attach a medical

label to this differentness? This thinking emphasizes that

society needs diversity and different thinkers. Among this

school of thought, it may be considered heinous and coercive

to advocate the use of medications in children to achieve

"normal" behavior (Leifer, 1990; Illich, 1976).

Interventions and other Controversies

In addition to a nonstandardized diagnostic process,

there are disputes as to when to intervene and at what

level. Many children are identified for testing by teacher

observation in elementary schools. This approach relies on

the skill (and beliefs) of the teacher and the expectations

placed on the child. If the child is not expected to

perform well in school (because of race, gender, family

situation, or some other reason), a difficulty attending in

class is likely to be overlooked.

Once diagnosed, there is no standard intervention for

this disorder. Stimulant medication is usually the first

intervention suggested. Although about 90% of children with

this diagnosis are medicated, the decision to use the

medication is usually difficult for parents (Reid, Maag,

Vasa, & Wright, 1994; Walker et al., 1988). For many

persons, the medication alone provides adequate resolution

of the behavior problems. As noted earlier, while the use

of medications for ADD is widely accepted in the medical

community, it continues to receive much social criticism

(Milich et al., 1989; Johnson, 1988; Summers & Caplan,


In addition to medication, behavior management and

psychotherapy for both the child and parents are often

recommended (Cousins & Weiss, 1993; Leung et al., 1994;

Beitchman, Inglis, & Schachter, 1992; Long, Rickert, &

Ashcraft, 1993). Cognitive and sensorimotor therapies are

appropriate in some cases, when the child also lacks

coordination or has difficulty using information from the

environment (Fisher, Murray, & Bundy, 1991; Kleinman &

Stalcup, 1991; Whalen & Henker, 1986). The use of these

other interventions is poorly researched. The type and

quality of interventions available are variable and non-

pharmaceutical treatments for ADD are seldom included in

routine health insurance coverage.

The Family and ADD

ADD is described in the DSM-III-R (1987) as a

"disruptive behavior disorder." Children with ADD interact

with and exasperate everyone in their environment. Anyone

who may be subjected to a range of disruptive behavior

ranging from spacy disorganization to physical aggression.

In this study there were seven (of 44) mothers who described

their child using the word "bad." Of these six children

were diagnosed with ADDH; the remaining one was a CF child

suspected of having ADDH as well.

Further complicating things, there is a strong genetic

pattern in the incidence of ADD (Hechtman, 1994; Lombroso,

Pauls, & Leckman, 1994; Faraone et al., 1993; Biederman et

al., 1992). Adult family members may have the same

difficulty with impulse control and social behavior that

their children face. Rather than adding to their

understanding of the child, this often seems to result in

impatient, aggressive, depressed, or substance abusing

parents (Marshall et al., 1990, Cantwell, 1988).

Epidemiologic studies demonstrate that persons with ADDH

often have an additional psychiatric diagnoses. Common

concurrent problems associated with ADDH are the other

common externalizing psychiatric conditions of conduct

disorder, oppositional-defiant disorder, and also both mood

(depression), and anxiety disorders (Biederman et al.,


Although families with ADD in general are not

significantly different in their functioning when compared

to established norms, there are significant differences in

functioning between ADD families dealing with hyperactivity

and those who are not.

Those families of children with ADD only, without the
additional problem of hyperactivity or aggressive
symptoms, reported the highest level of functioning,
and a larger percentage of families whose child had
hyperactivity or hyperactivity plus aggression were
extreme in their functioning. Age of the child was
related to poorer family functioning, suggesting a
cumulative negative effect on the family in dealing
with the child over time. In combination with parents'
perception of impulsivity/hyperactivity, the age of the
child was significant in predicting family functioning.
(Lewis, 1991 p. vi)

Parents of ADDH children reported fewer extended family

contacts and described these as less helpful than comparison

families (Cunningham, Benness, & Siegal, 1988). The

behavioral sequelae of ADD result in a public perception of

ineffective parental control (Friedman & Doyal, 1992).

Cystic Fibrosis

History and Social Issues

Cystic Fibrosis (CF) was first described in the medical

literature in the 1940s. It is the most common lethal

genetic illness in white children (McMullen, 1992). CF

occurs among blacks at the same rate as in whites, but is

less common among this group than sickle cell anemia.

Genetic research has provided a series of dramatic

breakthroughs in the treatment of this disorder. The CF

gene was isolated in 1989 (CF Foundation, 1989). Other

advances include the availability of a test to determine a

potential parent's CF carrier status (Miedzybrodzka et al.,

1994) and prenatal tests to determine carrier status (Lieu,

Watson, & Washington, 1994). The new genetic information

has led to the development of several new approaches to

intervention. The analysis of mucous build-up in the lungs

has led to the use of an inhaled enzyme therapy to reduce

congestion (Crystal et al., 1994). There is promise of in-

vitro and in-vivo gene therapy to genetically alter diseased

cells within the lung of the patient (Mittereder et al.,

1994; Brody et al., 1994). Studies on mice promise a

genetic therapy for intestinal defects common to CF (Zhou et

al., 1994).

The median survival age for children with CF has grown

from about 2 to 29 years of age. It is conceivable that in

the next ten years cystic fibrosis will be a chronic, but no

longer fatal disorder. There is a whole cohort of young

people with CF who were born with a life expectancy of less

than 17 years, but who are moving into adulthood and adult


Characteristics of the Disorder

CF was selected for this study because it, like ADD

manifests at (or near) the time of birth, is invisible to

the casual observer, and requires extensive parental

accommodation. The fact that school age children with CF

are often healthy and active, while requiring ongoing

treatment, makes it comparable to ADD because it is socially

"invisible." CF is much less common than ADD, occurring in

approximately one in every two thousand births (McMullen,

1992). CF is not associated with intellectual, social or

behavioral abnormalities. The social and behavioral

differences between ADD and CF are the focus of group

comparison in this research.

CF affects multiple organs throughout the body, most

particularly the pulmonary and digestive systems. Common

clinical problems are pancreatic enzyme deficiency,

progressive chronic obstructive lung disease, and sweat

gland dysfunction (McMullin, 1992).

A primary concern of families with children who have CF

are the regular hospitalizations such persons need, "tune-

ups" they are called, averaging about two weeks one to two

times a year. Ongoing issues that worry the families are

growth delays, drug resistant bacteria, bowel problems,

coughs and wheezing (McCollum & Gibson, 1970).

Children with CF are especially susceptible to disease

complications, like lung infections. Ordinary childhood

illnesses like chicken pox often lead to hospitalization

because of the potential exacerbation of pulmonary symptoms

(McMullin, 1992). Any lung infection can become fatal for a

child with CF. Mothers in this study reported extreme care

to limit their child's exposure to colds and other diseases.

The most common concern expressed about their child starting

school was the increased exposure to disease.


Unlike ADD, there is no medical or social controversy

about the existence or medical management of CF. Diagnosis

is definitive. Treatment of CF is equally clear cut.


Children need to take pancreatic enzymes each time they eat,

and require a high caloric intake. Their susceptibility to

lung infections necessitates periodic courses of antibiotics

and occasional hospitalization. In most cases, ongoing

chest percussion and inhaled medication are used one to two

times daily to clear bronchial obstruction (McMullen, 1992).

Aerobic exercise and physical activity are encouraged

to help maintain pulmonary efficiency. Many children

receive postural drainage and chest percussion two to four

times daily (Williams, 1994). New treatments for CF offer

more than symptomatic relief. In cases of extensive lung

disease, some success has been documented with lung

transplantation. One of the new genetic treatments

introduces normal human DNA for lung fluids into the lung

lining of the person with CF. This type of treatment offers

families more hope for the future, but adds some complex new

medical procedures for them to learn.

CF has a clearly defined progression of symptoms

although the rate of deterioration varies widely. For the

most part, elementary school children have a truly invisible

disorder. By late adolescence, many children acquire a

distinctive cough, wheezing, and decreased exercise


Children and families with CF have access to extensive

medical and social support through the health care system.

In the state of Florida all persons with CF have their

specialized health care needs (routine appointments,

hospitalizations, medication, counseling, etc.) provided

through a few specialized clinics that contract with

Children's Medical Services of Florida (CMS). CMS is a

Title 5 agency, designed to provide case management services

for financially eligible families. When private health

insurance exists, the policy is used to pay for services.

In many cases health insurance companies refuse to insure

persons with CF. CMS also provides supplemental care to

indigents who are covered by Medicaid, and care on a sliding

scale to other clients.

All the mothers interviewed were drawn from the same

CMS district. In this district CMS will pay for the clinic

visits, hospitalizations, and prescriptions for any child

with CF. Unlike those with ADD, children with CF are

assured payment for basic health care expenses.

The Family and CF

The most distinctive issue that families with CF face

is the emotional difficulties associated with their child's

prognosis. The daily care of CF is extensive, but routine.

Studies of families with CF indicate normal family

interactions and typical daily function (Sawyer, 1992;

Gibson, 1988; Phillips et al., 1985). There is little

social isolation associated with CF. Parents report

extensive use of social resources, including support from

the extended family, assistance from the pulmonary clinic,

and contact with other parents (Gibson, 1988).

There is some evidence that adolescents and young

adults with CF are less responsible for themselves than are

their healthy peers. The mothers of these teens report fear

for their child. For many, concern about early death haunts

daily family decision making. In trying to create a normal

home environment, mothers of the CF child worry about the

effects of their fears on the well-being of the family

(Nuttall & Nicholes, 1992). One of the most disruptive

aspects of CF management is the need for frequent

hospitalizations, which disrupt routines and add stress to

all family members. Specific problems associated with

hospitalizations include "well" child care, transportation,

school expectations, vacations, and time-off from


The focus of this study is on the mothers of impaired

children. The mothers' feelings about the condition and

about themselves in relation to the condition provides a

basis for explaining disability specific challenges. It is

expected that the stigma of poor parenting will influence

maternal behavior and beliefs.


The Social Construction of the Family

In the face of chronic challenge, the perception of

"life as normal" is highly valued. Normalization provides a

model of adaptation to long term disability. Normalization

theory is based in the belief that individuals (in this case

mothers) assimilate and make meaning of their lives, and

then act on their own constructions. "This process becomes

reciprocal as action then serves to shape meaning or belief

. people construct meaning by structuring their

experience into stories the story is [then] the

context in which life events are interpreted." (Robinson,

1993, p.8)

Parents of children with ongoing problems are advised

to raise their children as they would children who were not

disabled. This encourages the development of the dominant

story as one of a normal family leading a normal life. With

normalization, special procedures and adaptations for the

child become routine or habitual over time (Deatrick, Knafl,

& Walsh, 1988; Knafl & Deatrick, 1986; Gibson, 1988). The

description of complex daily care routines as "normal"


characterizes assimilation of the differentnesss" and may be

an indication of positive adjustment to long term


Families continuously create and elaborate on family

"stories." Family stories provide an account of family

history and creates a context for interpretation of current

family actions. Families select only those parts of the

actual events that support the prevailing story to

assimilate into their daily lives. The prevalent family

story seen in families positively adjusted to dealing with a

chronically ill family member is the story of life "as

normal" (Robinson, 1993; Knafl & Deatrick, 1986; Seligman &

Darling, 1989).

The life "as normal" story in chronic illness glosses

over atypical family demands and routines. The behaviors

specific to managing the disease are presented as

inconsequential in telling the family story. When a family

embraces a life "as normal" story they may no longer be

sensitive to all the ways they accommodate the disability.

Normalization is the incorporation of a life "as

normal" story into the family consciousness. Normalization

is considered a positive adaptation to daily demands that

are atypical. A key to normalization is that the daily

demands associated with the disability can be routinized,

and therefore performed without thought or emotional

challenge (Knafl & Deatrick, 1986). Threats to the


development of a self-perception of normality are isolation,

uncertainty, and unpredictability (Angst, 1992).

All families socially construct themselves in the

manner described above. Gallimore et al. (1989) elaborated

on this process to suggest that a family's environment

offers a limited array of resources and constraints. Within

the explanation offered by this theory, ecocultural theory,

families work within these constraint to create an

acceptable family story. In other words, families construct

"niches" or activity settings in which they can build their

"life as normal story". In this research, the search for

the perfect "school" was a goal of many respondents. A very

high proportion of the ADD children in income brackets over

$50,000 were in private schools that provided environments

in which the child could be "normal." This ecocultural

niche approach is believed to affirm family patterns of

action in the face of social pressures. The niche allows

the approximation of "normal" within the constraints faced

by the family and the child.

Ecocultural theory operates to analyze families beyond

their self-perception of normalcy. Of the 23 families

having a child with CF, 17 said that friends and family

viewed their child as normal, ordinary, or in terms of

specific attributes like outgoing or serious. Only one of

the ADD mothers used the word normal and one used the word

ordinary in describing their child. Mothers dealing with


ADD are expected to have difficulty normalizing the demands

placed upon them. The impulsiveness and disorganization

common to the child with ADD makes it difficult to establish

or maintain routines.

A focus on the social construction of the family "as

normal" will be used in the analysis of this data to help

determine whether the behavior and social adaptations of

either group supports or extends the theory of

normalization. The ecocultural theory will be considered

because it offers a strategy for creating a semblance of

"normal" when normal is not possible under existing

circumstances. In ecocultural theory there is a family

constructed set of beliefs, behaviors and routines that

promulgate the family self-perception. This family self-

perception could be adaptive, neutral, or maladaptive.

The Mother Role

Individuals maintain a variety of roles in the family

group. Those roles are likely to change with the social and

environmental demands of the situation. This research seeks

insight into the subjective role experience of parenting a

chronically impaired child. Differing gender and cultural

expectations are likely to affect an individual's perception

of their parent role. While other family members may do

much parenting, this research focuses on the parenting

experience of mothers. Mothers are consistently more

involved in the daily lives of their children (Thompson &

Walker, 1991) and are more available in the clinical

settings where this research is set.

The role of mother is value laden and includes both the

daily work of child care and the larger social meaning of

having children (Boulton, 1983). Societal images of

motherhood include that 1) a mother enjoys her child, 2) a

mother intuitively knows what to do for her child, 3) a

mother cares for her child without ambivalence, and 4) the

mother devotes herself first to her child's needs (Thompson

& Walker, 1991). This role is subjective and "ongoingly

maintained, modified and reconstructed" (Berger & Luckmann,

1967, p. 172). Social ideals about motherhood are germane

to this study as an explanation for the choices and behavior


Ideals of motherhood are clearly socially constructed

(Margolis, 1984; Hunter College Women's Studies Collective,

1983; Berger & Luckmann, 1967). The presentation of

motherhood as either a full-time occupation or a "job" is a

twentieth century construction (Bernard, 1974; Margolis,

1984). Around the turn of the century there was a trend

toward the "professionalization of motherhood" (Margolis,

1984, p.40), marked by widespread marketing of materials to

train appropriate mothering. Using the gestalt presented in

the popular media, including Working Mother magazine, Parent

magazine, and Parenting magazine, because of economic need

mothers are now expected to work outside the home, yet be

committed to "professional" mothering. Economic need rather

than career aspiration is often cited as a reason to work,

with the ideal of full-time at home mothering. In addition,

mothers tend to personalize their child's successes,

failures, and sometimes even illnesses. Margolis (1984)

noted that "mothers are not only blamed for their children's

psychological and behavioral problems but sometimes for

their physical problems as well" (p. 259).

Challenges to the Mother Role

Gilgun, Daly, and Handel (1992) describe parenting as

an "ongoing, and at times unpredictable, process of personal

change [that] occurs against the backdrop of a typified,

taken-for-granted reality" (p. 105). Most of the mothers

studied describe a process of personal change in response to

their child. Their overall role expectations and sense of

personal control are challenged by the demands of a

chronically impaired child.

The reciprocal nature of parent-child relations results

in both the expected pattern of a parent shaping a child's

behavior, and to the less discussed issue of the child

shaping the parent's behavior. Ways in which parents

accommodate children include changes in routine, work or


career decisions, and time spent at home. In this study any

of this type of accommodation will be considered to impact

the mother's sense of "mothering". The process of

redefining maternal roles in the face of chronic childhood

disabilities is expected to force the mother to take stock

of herself and her expectations.

The challenge of chronic illness often results in

either a revised maternal identity that contributes to a

perception of normality, or to a pattern of ongoing crises.

In both samples the behaviors that mothers needed to manage

their child were atypical. For example, in both cases

mothers felt that they maintained a higher level of child

vigilance for their impaired child than other mothers.

The greater the deviations in the mother's role

performance and expectations from the cultural norms, the

higher the probability that that individual will experience

stress. Also, because child outcomes are linked to societal

perceptions of mothering, the failure of a child to develop

in expected ways challenges the mother's perception of

competence. Some mothers respond to these challenges with

compulsive adhesion to treatment rituals. By assuring that

their child gets the best, most extensive intervention

routines the mother is convinced she is a good mother, in

spite of her imperfect child. If the routine she adopts as

"best treatment" is not accepted by health care

practitioners, the mother may feel that the health care


provider is denouncing her mother role. A common example of

this is a special sugar-free additive-free diet to treat

hyperactivity. Maintaining the diet is requires much

maternal effort (baking bread and such), and refutation of

this approach may constitute a challenge to that

individual's mother role. This sort of challenge is likely

to cause vulnerability and limit the potential for

adaptation unless it is handled carefully and sensitively.

Research on children with chronic medical conditions,

including cystic fibrosis (McCubbin, 1984), developmental

disabilities (Freidrich, Cohen, & Wilturner, 1987; Dunst,

Cooper, & Bolick, 1987), and physical disability (Kazak,

1986; Pless & Pinkerton, 1975; Stowell, 1987) consistently

links the adaptive processes of families to those in the

impaired child. In those instances where the child does not

behave as socially expected, the mother's role performance

is challenged.

Parents of atypical children often deal with both

exaggerated normal stresses, like the increased vigilance

reported, and some stresses unique to their child's

disability, like the management of inhaled and IV

medications in CF (Failla & Jones, 1991; Cherry, 1989;

Slater & Wikler, 1986). This research will describe the

types of concerns and pressures reported by mothers of

children with CF and mothers of children with ADD.

The Resiliency Model of Family Stress

The family unit, and the mother's role within it, are

determinant in the successful provision of health care

services to children (Pless & Pinkerton, 1976; Patterson,

McCubbin, & Warwick, 1990). In most cases the mother is the

primary caretaker, and the mother's understanding of and

commitment to her child's intervention are salient

predictors of child health outcomes (McCubbin et al., 1983;

McCubbin & Thompson, 1991; Patterson, McCubbin, & Warwick,


The Resiliency Model of Family Stress and Adaptation

(RMFSA) will be used to describe and analyze the dynamic

influences of children's disabilities on a family system.

The RMFSA works on these assumptions: 1) families face

hardships and changes as a natural aspect of family life; 2)

families foster the growth and development of family

members; 3) families protect themselves from unexplained or

non-normative stressors; 4) families adapt to reduce

disruption following a family crisis; and 5) families

benefit from and contribute to the network of resources in

the community (McCubbin & Thompson, 1991, p. 3).

The RMFSA describes two phases in a family's response

to life changes and challenges. The adjustment phase is the

first response to an acute stressor. Figure 1 outlines the

adjustment phase of this model. As illustrated the outcome

of the adjustment phase is either adaptation or exhaustion.

Adaptation in this phase usually involves a coping strategy

like avoidance, elimination, or assimilation (McCubbin &

Thompson, 1991). Adjustment is a short term response. This

is the process through which the family responds to ordinary

life changes and transitions.

The adaptation phase extends the focus to the family's

efforts over time. Background stressors are chronic

unresolved pressures on the family. Background stress plays

a small role in the adjustment phase, and a large role in

the adaptation stage. Common background stresses include

concerns about family financial limitations, the age of the

child, and the stigma associated with chronic disability.

Pile-up of Stressors

The assimilation of everyday pressures and day-to-day

crises creates an accumulation of unresolved issues,

described by McCubbin and Thompson (1991) as a pile-up of

concurrent or prior stressors. This pile-up provides a

"background" level of stress upon which new events

accumulate. The accumulation of background stress is

associated with maladjustment in the adjustment phase of

RMFSA. From this the family moves into a crisis state that

results in either adaptation or exhaustion.






Figure 1 Adjustment Phase of the RMFSA

Stress pile-up may include a specific crisis situation

such as a divorce, the addition of a family member, or a

change in the work status of a family member. It may also

include normative transitions like the high need for

nurturance and supervision with young children, a desire to

pursue a career, or a change in the extended family.

Normative transitions given a particular focus in this

research included a child entering school, transitions in

school (i.e. from elementary school to middle school), and


Prior strains are the residue of earlier unresolved

crises. There may also be prior strains inherent in ongoing

family roles. This pressure on the family due to role

ambiguities is important to consider in this study. If the

role of "parent" is indeed a loosely proscribed social

construction, then parents would perceive more role strain

if their family was socially atypical. A family with an ill

family member, that still functioned within the bounds of

social expectations is unlikely to experience this type of

role strain. Stress pile-up and role strain negatively

impact family function (McCubbin & Thompson, 1991; Lavee,

McCubbin, and Olson, 1992).

Family Vulnerability

Family vulnerability is a dynamic response threshold

determining whether a family perceives specific events or

demands to be threatening. Family vulnerability varies with

the amount of demands and stressors experienced and the

family resource level (McCubbin & Thompson, 1991; Mahon,

1992; Kazak, 1989). All families experience some degree of

vulnerability and periodically experience situational


In this model the stressor event or transition starts

the process. This stressor interacts with the family's

vulnerability. The concurrent pile-up of demands on the

family determines vulnerability. Demands include stressors,

strains, transitions, and the family's life cycle stage.

These factors are: the specific characteristics of the

child's disorder, cumulation of both background and personal

stresses, family resources, and the social network of the

family. Family vulnerability is the outcome of the

interplay between family stresses and family resources.

High vulnerability suggests high stress with relatively low


This interaction of stresses, strains, and family

vulnerability occurs in the family adjustment process.

Adjustment is a short-term response to manage life changes,

transitions, and demands. This research will consider the

family's current situational stresses in order to

distinguish ordinary stress from issues specific to

disability. Social network will also be considered because

the impact of personal stressors is expected to be reduced

in the presence of social support (Cobb 1982; Pilsuk & Parks


The adaptation phase focuses on family problem-solving

and efforts over time to recover from and minimize crisis

situations. Because the chronic childhood conditions being

studied include daily adaptations over a long period of

time, this portion of the RMFSA will be emphasized in this

research. Adaptation is a dynamic response building on and

interacting with the adjustment phase of the model. For

this reason there are many redundant aspects of Figure 1 and

Figure 2. Figure 2 illustrates the adaptation phase of the


Figure 2 begins where the adjustment phase leaves off,

with either family adaptation or exhaustion. In this phase

family values, family coherence, community, and friend

support are expected to play important roles. The outcome

of this phase is a balance between individual family members

and the family unit and a fit between the family unit and

the community of which the family is a part.

The components of this model, vulnerability, resources,

resiliency, and adaptation were used in determining

interview content in this study. Some of the constructs in

the RMFSA were not measured. Family typology was not

considered because in this research there was no intent to

predict or quantify family function.

The Sick Role

In the general population the identification of a

specific disease process (as in cancer) sanctions different

social behavior. Classically, the "sick role" affords a

release from usual work and self-care expectations (Maddox &

Glass, 1989; Parsons, 1975). The sick role conception

focuses on individuals with some illness and assumes that

the illness will not persist. The extension of the sick

role to families is presumed because of the pre-eminence of

the mother-child dyad socially.

"Disease" Boundary

In the boundaries of the sick role described by Parsons

(1951), a "disease" is a condition in which the person has

an incapacity that is beyond his or her control. The sick

individual (or mother-child dyad) is not responsible for

either causing or maintaining the child's illness. CF is a

"disease" within this definition. Although it is genetic,

CF is recessive. None of the mothers in the study believed






The Adaptation Phase of the RMFSA

Figure 2

that they were at risk for having a CF child, and none of

the mothers had another child (with the same father) after

their child was diagnosed with CF. The condition is known

to be incurable, so while the mother's behavior may extend

or shorten a child's life, the mother cannot through

exemplary behavior, eliminate the problem.

Is ADD a condition that is beyond the control of the

mother and/or the child? This problem is central to this

research. ADD has been medically identified, and is treated

biochemically. But is the behavior manifested outside of

possible control by the child or the mother? ADD is genetic

and the exact means of genetic transmission are unknown, so

parents having these children cannot be considered "at

fault." Most of the ADD children were not diagnosed until

after they had started school, and although the families

with ADD had more children, those mothers also did not

continue having children after their child was diagnosed.

Like CF, the condition is incurable, at least in

neurophysiological terms. This is where the problem of

public opinion occurs for ADD. Mothers are considered

responsible for their child's behavior and ADD children

often misbehave. Society and even many of the mothers

themselves feel that control of behavior is a mark of good

character and a social responsibility. Impulsive,

aggressive, and disruptive behaviors are condemned widely.

The medical explanation does not seem to free either the

children or their mothers from socially accepted behavior


"Treatment" Boundary

Another boundary of the sick role is that the sick

person recognize that illness is an undesirable state and

must cooperate with efforts at treatment. Important to this

research is the condition that all members of the sick

person's family have an obligation to seek and cooperate

with competent medical help.

As before, CF fits easily within this constraint.

Because the children do not live without persistent and

aggressive medical intervention, they are living

acknowledgements of cooperation with treatment. The CF

mothers reported lots of social affirmation, little

volunteered advice, and little unhelpful behavior in the

community. ADD presents a more mixed picture.

There is no widespread agreement on the treatment of

ADD. In the general public, as many condemn medicating the

children as support it. Mothers in this study reported

testing for allergies, trying special diets, and attempting

a variety of interventions through health care providers

including parenting classes, anger management groups, and

occupational therapy. In spite of medical research, the

public opinion persists that ADD is not a disease but a

manifestation of poor parenting and poor child self-


Because it is not recognized as a "disease," treatment

with stimulant medication (the recommended medical approach)

is seen as a crutch or a way to hide the real problem. With

ADD, the use of medically recommended treatment is not

always socially affirmed. With the lack of "disease" status

families dealing with ADD do not get a release from social

expectations for child or parental behavior. There are

diverse approaches to treatment of ADD. These treatments

also, may not be socially sanctioned, depending on the

beliefs of the individuals involved. For this reason

efforts toward treatment may not be acknowledged.

The sick role perspective considers illness a form of

social deviance. In this viewpoint families dealing with

chronic childhood illness can be considered deviant. The

natural tendency to move away from social deviance toward

"normal" will provide insight into the analysis of mother's

concerns and behaviors in meeting her child's health needs.

It is expected that community and other social supports will

be more available to a family that is deviant because of

"illness" than a family that is "deviant" without the

sanction of the sick role. In keeping with this theory, we

would expect families with CF will receive more social

affirmation and support then families with ADD. Most

families in both groups remarked that their children's

disease was "invisible" and they only told "people who

needed to know" about it. They said that they wanted their

family and their child to be treated normally. In this

instance, the CF families again will have the more positive

experience. CF children look and behave normally. Social

reaction to them will affirm the families sense of normalcy.

The disruptive social behavior common to children with ADD

with result in negative social pressures and a family sense

of deviance.


Viewed in the context of the sick role and deviance,

normalization can be considered an adaptation to chronic

illness that allows a family to make the transition from

social deviance to social normalcy. Literature on

chronicity states that families "normalize" the special

demands placed on them by their child's chronic condition

(Robinson, 1993). The "normalization" process is an

adaptive response common to both adult and childhood

conditions requiring special routines or medical management.

Normalization is "the constant process of actively

accommodating the changing physical and emotional needs of

the child or adolescent" (Deatrick, Knafl, & Walsh, 1988,

p.17). Families actively construct a "normal" approach to

their special child. Research on families with a mentally


retarded child reports that social construction occurs both

within the family and in the society at large. The overall

goal of normalization is to "integrate the child into the

family rather than making him or her a 'special nucleus'"

(Deatrick, Knafl, & Walsh, 1988, p.17). Normalization is an

ongoing process that involves both conscious and unconscious

behavior strategies to deal with activities of daily living;

discipline; socialization of the child; family recreation

and other "normal" childhood activities like school.

Gallimore et al. (1989) develop a similar theory

involving family construction of beliefs about everyday

routines. In the Ecocultural theory beliefs, values, goals

and resources of the family are mediated through daily

routine. In both normalization and ecocultural theory the

family is an active participant in developing and

maintaining an atmosphere that enhances the perception of

"life as normal."

A perception of family life as normal seems largely

based on the establishment of order and routines in daily

activities. Medical treatments that need to be done become

assimilated into normal wake-up and bedtime activities. When

activities cannot be routinized by time of day, they may be

routinized in what the mother "routinely" carries in her

purse for interventions or in a highly structured behavioral

routine. Most of the treatment of CF lends itself to

routinization. The behaviors associated with ADD are less

amenable because they are interactive in terms of time,

place, objects, and persons the child comes into contact

with. Because families cannot totally control these

influences, the treatment of ADD is not easily routinized.

Model of Human Occupation

Because roles, activities of daily living, and personal

routines are the foundation of normalization, the Model of

Human Occupation (MOHO)(Kielhofner, 1985) provides a useful

tool for data analysis. MOHO presents a detailed framework

for the analysis of personal roles, routines and habits.

Each individual is determined to have a variety of work,

play, and daily living roles that are unique based on their

beliefs, experiences and environments. Role expectations are

dynamic and environmentally sensitive (Barris et al., 1985).

Using the language of theories mentioned earlier in this

text, roles are socially constructed and may vary from

hospital to the classroom to other settings.

Occupational Role Analysis

MOHO assumes that people choose and participate in

roles that are socially recognized based on their values,

interests, abilities, and social pressures. This assumption

is not consistent with the previously described role of


mother. Not everyone who engages in parenting specifically

chose that role, and few of the mothers in this study chose

to parent a chronically ill child. Unlike the role of

worker, parenting is a loosely defined social role for which

there is no specific delineation of behaviors that define

competency. Although parenting roles fall outside the role

assumptions stated in MOHO, the analysis of volition and

environmental press contribute possible explanations for the

perceptions of the mothers in this sample.

The concepts "sick role" and normalization are not

components of MOHO, but are in some ways consistent with it.

A model of occupational role analysis was developed by Cubie

(1985). This model includes five discrete aspects of roles:

environment as created by the occupation, motivation, the

organization of behavior, the development of skill, and

output of the behavior. Successful performance of social

roles is seen as the result of efficient, organized

occupational behaviors (i.e., play activities, self-care

activities, and work). Optimally, these behaviors are

organized into patterns or routines that become habit. In

theory, by relegating everyday behaviors to habit, the

person is free to direct more of their energy to explore,

learn, and challenge their environment.

Parents of chronically ill children must look outside

traditional social roles to pattern and organize their

behaviors. The "sick role" affirms the decision to abort

career plans and stay home with the "sick" child. It also

could be used to de-emphasize ordinary behavior expectations

of childhood. Normalization behavior of mothers with

chronically ill children should be conducive to positive

adaptation and family function.

Environmental Press

MOHO was not constructed to address the issues of

families, but addresses the family as an aspect in the

individual's environment. Figure 3 presents MOHO's four

conceptual layers of environmental influence on the

individual. In this model the family, the school, and the

health care system are seen as part of the social groups and

organizations layer. Environmental press is the

"environmental expectations for certain behavior" (Barris et

al., 1985). Press is a useful construct in this research as

it influences the habits, routines, and role expectations of

the individual.

The environmental press for mothers of children in the

two groups are only slightly different. Expectations of

good parenting and social roles remain stable for both

groups of mothers. The press that the community exerts on

the mother, and the reciprocal press of the child on the

mother are the interactions of interest in this research.

It is hypothesized that the social, school, and family press

is very different for children with ADD and children with


The match or mismatch of environmental press on

maternal perceptions and competence parallels theories of

normalization. Normalization is the process of constructing

a cognitive perception of life with a chronic condition as

"just like any other family." In CF the social press

supports the development of normalization. ADD presents a

mismatch between child behaviors and social press. The

press from the community is for a controlled and socially

successful child. The press from the child successfully

disarms the mother of tools to respond to child behavior.

The ADD children do not respond like typical children to

spanking, threats, and ordinary discipline measures.

Unsuccessful in developing strategies for normalization,

many of the ADD mothers opt for social isolation.

Theory Grounding this Research

This research was not designed to test any specific

theory. The intent of this study was to describe the

subjective experience of mothers dealing with chronic

childhood experiences. The theories described, specifically

RMFSA, the sick role, and MOHO, were considered in the

design of this study and in the development of the interview

format. This was done to ensure that the interview


Figure 3 Environmental Influences from MOHO

contained relevant information and could be considered in

context with other published research.

The extension of existing theory was considered, but

the organization of the theories guiding this research is

very different. MOHO is a hierarchical theory in which

"layers" are expected to build upon each other in a

predictable, orderly fashion. RMFSA is a pattern theory.

In the RMFSA the constructs are arranged horizontally and

the factors composing the theory are assumed to interact.

The way that the basic ideas about the role of routines,

roles, and environmental press from MOHO were incorporated

is presented in Table 1.

Table 1 Integration of MOHO and RMFSA Constructs
Objects and Social groups & Culture:
Tasks: Organizations:

Pile-up of Family Support & Personal Values,
Demands Priorities Faith &
Demands and Friend Support & Community Values
Routines Acceptance and Expectations

Tangible Community Support Social Values and
Resources & Resources Expectations

The RMFSA constructs pictured in Figure 2 and the MOHO

constructs included in Table 1 provided the framework for

the development of interview questions and transcript

coding. The interview question coding is presented in

Appendix A. These codes were used throughout the


transcripts to identify comments relating to theory



Grounded Theory and Analytic Induction

This study uses a grounded theory approach to examine

the ways in which mothers of children with chronic illness

perceive their roles and adapt to family and community

pressures. Grounded theory approaches to qualitative

research involves systematically interweaving data,

abstractions from the data, previous research and theory

(Strauss & Corbin, 1990; Glaser & Strauss, 1967; Gilgun,

1992; Charmaz, 1990).

Incorporating the procedures of analytic induction into

the grounded theory approach enhances the construction of

theory that is grounded both empirically and conceptually

(Gilgun, 1992). Classically grounded theory research is

done in an open-ended way, without the preconceptions of

existing theory. Grounded theory is grounded in the data,

which are in turn grounded in time and place. Analytic

induction begins with a set of hypotheses and involves

matching patterns in the data with expected patterns in the

hypothesis. This adds credibility to open-ended data

collection. In this way the type of data needed is

collected to compare with existing theory but the data are

not led by structured or forced choice questions. Key

aspects of the RMFSA and MOHO were incorporated into the

interview outline to organize data collection. Within this

context I intended to generate concepts grounded in data

that may have relevance to existing research. The data were

not forced into specific theory aspects. Where they were

consistent, they were so coded. Emergent themes were also

coded, and some passages were cross coded in more than one

manner. I collected, coded, and analyzed the data


Rationale and Specific Aims

The purposes of this research are to describe the

relationship of the childhood conditions Attention Deficit

Disorder (ADD) and Cystic Fibrosis (CF) with mothers'

reports of personal and family stress. The perception of

mothers is expected to influence the whole family and

reflect both the environmental press and external stressors

experienced by family members.

Family variables that are expected to influence the

perception of stress include family structure, family

demands, and life-cycle stage of the children. These

variables are assumed to behave consistently across

disability types. For example, a family with only one adult

caretaker is expected to perceive more stress than a family

with two resident adults. Families with preschool children

and adolescents are expected to perceive more stress,

regardless of any chronic illness in the family.

Family vulnerability is a composite reflecting the

cumulation of perceived stressors and disability

characteristics. High perception of demands corresponds with

high vulnerability to stress and family dysfunction.

Resiliency, the ability to respond positively to stress and

environmental press is seen in family time use, routines,

and perceived community and family resources.


Subjects for this study were recruited from the J.H.

Miller Health Science Center pediatric pulmonary clinics (CF

mothers) and the Morris Center (ADD mothers). The regional

chapters of Ch.A.D.D., a support group for families with

ADD, and CF-Sharp, a support group for families with CF also

supplied subjects. To be included, a woman needed to be

over 18 years of age, be fluent in English, and have a child

between the ages of 5 and 18 diagnosed with either CF or

ADD. "Mother" includes biological, adopted, foster, and

step mothers. Mothers were excluded if they (or the health

care team) report acute life threatening illness in the

immediate family. The researcher visited the clinics and

the support groups, introduced herself and briefly described

the study. Eligible mothers were invited to participate.

Consenting subjects were interviewed during the child's

clinic visit, or interviews were scheduled for a later date.

Three ADD mothers and one CF mother who were asked to

participate in the study declined to do so. These mothers

cited personal time constraints. Seven CF mothers and one

ADD mother scheduled interviews and then failed to appear or

to reschedule. A total of 44 subjects were included in the

study. Each subject consented to the audiotaping of the

interview. Data consists of transcripts of all audiotapes

and written notes collected by the researcher during the


Table 2 includes basic demographic comparisons of the

two subject groups. The area in which the two groups differ

most importantly is income. The discrepancy in incomes in

the two groups is explained by several factors. Forty per

cent of the ADD sample was referred through a private clinic

specializing in ADD treatment. To be accepted into this

clinic families must have insurance and the ability to pay

for additional tutoring and language services. This clinic

is not easily accessible to low income or indigent families.

Additionally, CF families must have either very low incomes

or very high incomes to assure full medical coverage for

their child. Several CF mothers reported that they were

afraid to earn much because their child would lose their

state medical benefits.

Table 2 Demographic Summary
Mean # children Resident N = 11
in home: 2.00 Spouse: 50% Mean:
Mean # CF N= 19 of 37,957
children:1.00 a total Mean:0.48 STD:
CF STD: 1.00 of 22 37.30 STD:0.49 38,241
STD:0.49 38,241..............................................
Mean Age:11.00 86% Median:
(of CF child) $30,000
STD: 4.58

ADD Mean # children Resident 41.00 N = 13 Mean:
in home: 2.32 Spouse: STD: 6.10 62% 65,636
Mean # ADD N= 18 of STD:
children:1.32 a total Mean:0.59 43,236
STD: 0.57 of 21 STD: 0.43
.............................................. Median:
Mean Age ADD 86% $42,000
child: 9.69
STD: 3.01
The family that contains one child with CF and one
with ADDH is not counted in either sample on this table
^35 hours a week or more was coded 1 for full time
employment. Paid employment less than 35 hours a week
was coded 0.5.

A distinction not clear in this table is the number of

impaired children in the home. Only one CF family had more

than one child with CF. Nine of the ADD families had two or

more children with ADD. One interview subject had one child

with CF and one child with ADDH. This interview was not

included in the sample summary in Table 2. Figure 4

presents a comparison of some of the important differences



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in the two sample groups. Specific information about these

samples can be found in the following two tables.

Table 3 ADD Sample Summary
N= 32 N= 22
ADDH Mental Adopted ADD Mental Resident
Health ? Health ?* Spouse
SUM: 25 9 12 8 7 18
MEAN: 0.81 0.30 0.36 0.36 0.29 0.82

STD: 0.40 0.46 0.49 0.49 0.46 0.40

%: 78% 28% 38% 36% 32% 82%

nhen a parent is reported as abusing a child, that
parent was included as having a mental health problem.

Table 3 presents child and parent characteristics of

the ADD sample. ADDH is expected to be more stressful for

mothers because the child's behavior is more likely to be

disruptive and antisocial. Seventy eight per cent of the

ADD children had hyperactivity. This is consistent with th

reported incidence of ADDH in the ADD population.

The high percentage of ADD children that is adopted wa

an unexpected finding. Only one of the adoptive parents in

the ADD sample knowingly adopted a child with a chronic

condition. For the others the ADD turned up later. It is

probable that adoptive and biological mothers will have

different personal expectations and different social

environments. For this reason, the ADD sample will be

considered both as a whole and as two distinct sub-groups.

Counseling for mental health problems was reported in

28% of the children. Four mothers volunteered that they



were being treated for depression. On Table 3 maternal

depression and counseling surrounding incidents of child

abuse was included in the parent mental health figures.

Mental health problems are likely to be under-reported

in both CF and ADD groups because no interview questions

specifically targeted this. Studies suggest that child

abuse, adult depression, and substance abuse are often seen

in families with ADD (Barkley et al., 1992; Biederman et

al., 1992). This may account for the difference in

incidence of mental health problems seen between the ADD and

the CF groups in this study.

Table 4 CF Sample Summary
N= 23 N= 22
Fragile Mental Adopted ADD Mental Resident
Health ? Health ? spouse
SUM: N = 6 N = 2 N = 2 N = 1 N = 1 N = 19

MEAN: 0.27 0.08 0.08 0.05 0.05 0.83

STD: 1.28 0.28 0.28 0.29 0.29 0.39

%: 26% 9% 9% 5% 5% 86%

Table 4 presents the characteristics of the CF children

and their parents. The children with CF are more likely to

be perceived as healthy and few were reported as receiving

counseling or psychiatric care. Some emotional problems

were mentioned in the interviews, but these were generally

in the older children and were focused on coping with a

terminal medical condition. Only two of the 23 children

with CF were adopted and both of these children were adopted

with full knowledge of their medical condition.

As noted, one mother had a child with CF and a child

with ADDH. This mother said that she also had ADD. No

other CF mothers reported an adult with ADD or depression in

the family. As with depression in the ADD group, there was

no specific question to draw this out, and it may be under-

reported. With CF there were more marital separations,

including one father in prison, and two who were employed in

other states.

Child mental health problems were noted whenever the

mother reported that the child was, or had at some time

attended counseling. This usually came up in the discussion

of special therapies the child received, and occurred more

frequently with the ADDH children. Since social work is a

routine part of CF clinic, it is possible that CF families

did not see social work counseling as a distinct

intervention. This would result in under-reporting the

emotional needs of their children. In both groups the need

for mental health support increased with the age of the



An interview using open-ended questions was developed.

The development was guided by the theories previously

discussed and organized in Appendix A. Four pre-trials of

the interview using mothers of children with ADD and other

disabilities resulted some additional format changes to

clarify questions. The first four interviews were conducted

on CF mothers. The issues of terminal disease, frequent

child hospitalizations, and normalization required some

additions to the interview. Also added to the end of the

interview was the question "If I were trying to describe

what it feels like living with [ADD/CF] is there

something I haven't asked you that you think is important?"

No other substantive changes were made to the interview

during the data collection period.

Additional notations were kept on whether or not the

child was present in the interview, mother's overall

outlook, interviewer's perception of mother's affect,

whether the disabled child was adopted, referral source, and

place of the interview. Two CF interviews were incomplete

and the mother of one child with CF had kept her child out

of school was unable to respond to the questions about

school. To compensate for this an additional CF interview

was completed.

Analysis during Data Collection

Open Coding

As the interviews were transcribed, theory references

were coded in to aid analysis. Some questions were extended

and elaborated on in future interviews to provide additional

opportunities for comment on theory related topics.

Appendix B includes the list of codes embedded into the

transcripts at this stage.

Labeling Factual Data

Several of the interview questions gathered simple

demographic and biographical information. Highlighted in

each transcript was the following information about the

disabled child: ADD (suspected but not treated), health

insurance type, educational placement, interventions (past

and present), medication schedule, birth order, disability

characteristics, and incidents of child violence, neglect or


Factual information collected about the mothers

included: age, total number of children, health insurance,

employment, child care problems, family income, marital

status, whether child was adopted, and description of any

other family member's disability.

Themes and Issues

As noted earlier, normalization and concerns about the

terminal nature of CF were prevalent early themes. Although

few normalization behaviors were evident in the ADD sample

mothers, the high value placed on it supports its importance

in positive adjustment. In ADD the observation that family

patterns of adopted and biological children were different

led to the extension of interview questions to to expound on

these issues. As additional themes occurred they were noted

and added to the list of codes to be embedded in

transcripts. Transcripts coded prior to the identification

of the theme were reviewed and new codes added as indicated.

An example of this was the stress associated with having

adolescents in the house. In both CF and ADD families, the

age of the child related to the stress reported by the

mothers. Disabled adolescents in both groups were critical

of and inconsistent in their medical regimes. In both cases

the concern for the child's future, their dependency on the

mother for routine daily activities, and their irreverent

views of the medical regimen were sources of stress and

family conflict.

Non-disabled adolescent siblings were more likely to

express discontent with the attention paid the disabled

sibling in both groups. Adolescent siblings of children

with ADD were more likely complain of embarrassment and be

openly hostile to the disabled child. For this reason the

presence of adolescents in the home was considered a family

strain and coded as such.

Drawing Conclusions

Counting. Facts, themes and patterns either predicted

by the theory grounding or observed during data collection

were noted and the frequency of occurrences tabulated. This

allows for verification of the presence of patterns

perceived by the researcher. For example, a number of

subjects mentioned concerns about their child's future. By

looking at the frequency with which these comments actually

occurred, and the age of the child to which they were

attributed, the relationship between concerns and child's

age can be verified.

Gofer (1989) software was used to aid in both counting

and categorizing tasks. Gofer is a RAM resident software

utility for searching, finding, and retrieving text. This

program uses Boolean Logic (and, or, not, nearby) to

identify specific text fields and relationships between text

fields. This software can search a number of files

simultaneously, adding consistency to the data analysis.

This method can be used to tabulate prevalence as well as

coded themes.

Categorizing. Extending the example above, after

determining the frequency of comments coded "concern for

child's future," the analyst reads each comment coded in

this way. By clustering comments with similar contents

trends or changes in content can be identified. This

approach will help identify relationships between variables.

For example, increasing concern that a child will not be

responsible for managing his or her medical interventions

was noted throughout adolescence in both groups. While

overall comments of "concern for child's future" may not

increase with the child's age, the type of concerns reported

do change.

The family hardiness and coherence constructs of the

RMFSA were originally to be measured by having subjects

complete the scales developed for this model after

completing the interview. Many mothers reacted negatively

to the scales, finding them negative, prescriptive and

sometimes ambiguous. Items like "Being active and learning

new things are encouraged" (McCubbin, McCubbin, & Thompson,

1986) and "Having faith in God" (McCubbin, Larsen, & Olson,

1982) clearly have socially correct answers. Rather than

using these scales, the constructs of hardiness and

coherence were considered in the analysis through references

to faith, positive and negative outlook, and the mother's

sense of personal control.

Axial Coding. Axial coding is "a set of procedures

whereby data are put back together in new ways after open

coding, by making connections between categories" (Strauss &

Corbin, 1990, p. 96). The focus of this procedure is on

specifying an observation in terms of the conditions

prefacing it. This involves identification of the context,

action/interactional strategies, and consequences of those

strategies. This puts the earlier coding in a relational


For this analysis, data categories were selected that

correspond with the theories described earlier. Summary

information from interviews was put in table form.

Information specific to the RMFSA includes: resources

(health insurance and income), family structure, adult's

employment status, demands (stresses and strains as defined

in RMFSA), school issues, mood, and social network. Looking

at normalization and occupational behavior, additional

summary information is: mom managed interventions, child

demands, social perception of child, child age at diagnosis,

child's medical/psychological regime.

A table was generated for each interview and patterns

in the data were analyzed by hand. If the summary data were

unclear, the original transcript was referenced. Patterns

predicted by the RMFSA were considered specifically. The

other research issues were sorted in a number of ways in

order to determine relationships between the data and

theory, and between the theories.

Validity and Reliability Issues

Reliability of Interviews

With open ended questions and a single interviewer it

is difficult to ensure that each subject understands the

question in the same way and that there is no ambiguity in

scoring. To maximize reliability, this interview was pre-

tested in four pre-trial interviews. With each interview

the questions were clarified and cues added to the interview

form to elicit the specific type of information required.

As noted earlier some of the issues associated with

terminal disease were not well developed in the first few CF

interviews. This was improved by the addition of two

questions: (1) If I were trying to describe what it feels

like living with this disease/disability, is there something

I haven't asked you that you think is important for me to

consider?, (2) Do you have concerns for your special child,

like college or future, that you do not have (or think you

would have) for a child without [ADD/CF]?

While no other substantive changes were made some

questions were extended. For example the question "Can you

think of specific ways that your child's disability has

affected your family in terms of: finances, relationship

problems, siblings, communication (with whom?), violence -

actual and threatened, available time, vacations/social

outings, child care, and extended family?" Was expanded to

the following:

"Can you think of specific ways that your child's
disability has affected your family in terms of:
Impact on marital/romantic relationships ?
Sibling relationships ?
Communication with spouse or significant other ?
Communication with [ADD/CF] child/ siblings?
Violence actual and threatened
Vacations/social outings?
Child care?
Extended Family?

Most mothers feel that there isn't enough time in the
day. What things do you feel that you don't have
enough time for?

Five interviews were transcribed by the researcher, and

the entire 45 were transcribed by a professional

transcriptionist. There were no inconsistencies between the

interviews transcribed by both the researcher and the

transcriptionist. At some points the audio tapes were

unclear. At these points the transcript is marked

[inaudible]. After transcription, the researcher went

through the text and added comments from the interview

notes. Comments were added in capital letters and/or

enclosed in brackets to assure their distinction in the

interview text.

Some interview transcripts, in their pre-coded form

were circulated to Cindy Capen, RN, MSN (CF specialist),

Kathy Noffsinger, RN, PNP (ADD specialist), and Connie

Shehan, Ph.D. (dissertation supervisor) for review. Coding

strategies were discussed with each of these persons prior

to analysis of themes and patterns in the text.

Triangulating Data

In addition to collecting interview notes and

audiotapes from 45 individuals, a careful literature review

was conducted to identify special themes or concerns common

to the two disability groups considered. As trends were

observed they were noted by the researcher. Noted trends

were compared to the literature and discussed with clinical

specialists for ADD and CF.

Trends in field notes were analyzed in the transcript

data to determine the frequency and context with which that

topic was mentioned. When a trend appeared consistent in

the transcripts, the researcher used future interviews to

confirm or refute the perceived pattern of responses.

Following initial analysis of data for trends and overall

content two interview subjects from each disability category

were given the summary information and data analysis for

content validation.

Emergent Themes

In reading and reviewing the transcripts, some patterns

were noted in the data that were not anticipated. If a

subject, or specific type of comment came up four or more

times it was listed and counted in the research notes.

Examples of patterns identified from these notes include the

difference in sibling interactions in the two sample groups,

and changing parental expectations for the child's future in

adolescence. Themes that were worthy of note, but not

specific to the research pupose follow.

Medications and social perception in ADD

In describing the social reaction to their child with

ADD many mothers offer long narratives, suggesting a complex

child-social interaction. For example:

Do you think your child stands out in social
situations? On or Off Ritalin? Off Ritalin, Yes. His
impulsive behavior always makes him stand out. He is
always into something. Always the center of every
conflict on the playground. He can be very aggressive
in an impulsive way. He is not a mean child, he does
these things without bad feelings. The other kids and
parents don't understand. On Ritalin, he gets very
involved in things. He loves nature, and studies
things like insects and rocks. He is very charming and
interested with the medicine [AD-13].

How do you think people perceive your kids ? Like in
the grocery store? One's going this way, and one's
going that way, and I'm going, "come back here, this
is one, get here now, hold on to that cart and don't
move." Probably that their mother is a total basket
case. Does that sound pretty normal? [AD-06]

Social responses of mothers with ADD children divide

into those people who had experience with stimulant

medication and those who did not. Of the kids with ADD in

this sample, only two families (three children) chose not to

use some type of stimulant medication. These mothers had

never tried medication refusing it based on their beliefs.

Concerns about the medicine were that it was a crutch, or an

indication of weak character:

[Ritalin] has been talked about, but I wouldn't put her
on Ritalin. I don't feel that she's old enough.
There's different theories with it. I would rather see
her be taught how to overcome her deficits than to put
in a crutch in there. An ADD child, you know, has a
degree of hyperactivity with some of them. And if this
is the case, she needs to learn what her system's going
to do. So that she can overcome it. If she doesn't
ever learn that, she'll never overcome it. Ritalin at
this point in her life, as a six year old, I feel would
mask. There's different theories and opinions on it.
That's my theory and my opinion. I feel that it would
mask what we're trying to do, which is to make her an
individual within her own right she needs to
learn how to calm herself down. [AD-07]

Mothers, who have experienced their children both on

and off medication are often very positive about stimulant

medications. Many of the mothers using medications were

doing so after fighting their own beliefs against


Have decisions about the use of medications or medical
therapies been a source of family conflict? It was a
source of conflict and I tried to do all the things I
thought I could handle to try. I took her to an
allergist. She got needles stuck in her little back to
find out everything she was allergic to. She was put
on this diet. We tried all kinds of stuff. Well, if
she was diabetic we hesitate to give her medicine.
She's not diabetic, but if her brain needs this just
give it to her.[AD-12]

Social censure is reported by many mothers, but they

defend with a medical explanation:

Has the use of medications been a controversy or
concern? At first it was, until I saw my neighbor up
the street medicate her ADD [child]. So she went
through the fights with her husband and all the tears
and as we stood back and watched them fight and have
tears, and then they decided on medication, and we all
saw the results, so we didn't have to go through that.
That's the truth, boy. It was great. And for the
record, people knock Ritalin left, right and center.
Pick up books and you read articles, you listen to your
professionals, and call up your drug company and you
get the up to date information. And it's not the
terrible thing. You treat epileptics, is what K-.
said, and I thought that was a very good comparison.
No one would hesitate to do that. But they say over
and over that Ritalin leaves the body and has been more
tested than any other drugs you would give a child .
So, no, I feel it's the best decision we ever made.
And the other thing is, when you see your child going
through such distress and they're coming and they're
crying, it's merciless not to do something about it. I
mean they're really in bad straits.[AD-19]

Have decisions about the use of medications or medical
therapies been a source of family conflict? No. We
talked about if for a while and looked into other
options. But the difference it makes in him is so
dramatic that it was an easy decision. Other people
are really negative about Ritalin. We just don't talk
about it. We don't let people know he is taking it
unless they need to deal with it. [AD-01]

Some ADD parents develop rather sophisticated defenses

to this type of social sanction.

And here in [city], you have group conferences.
You have seven teachers. And the parents sit
there, and they go, da, da, da da da, this is
happening in my class, and this is the way he's
reacting and so forth. And [my husband with ADD]
went to one and I'll never forget it I
had [the child's] psych report there. And it says
in the psych report that organizational skills and
motor skills, fine motor skills, like handwriting,
are very difficult. They're nonexistent. And
they were complaining about his handwriting, and
he couldn't organize, and he was losing things,

and couldn't get something turned in, and I said,
"Well, if you'll turn to page three, paragraph
three of the psych report, and you look at what he
says right there. I mean, this is what you're
talking about. The child neurologically cannot do
what you're asking him to do." And they're
looking at me like, "Yeah, mom, you're making all
these excuses." And [my husband] said, "I'm here
to tell you I'm an adult and I have the same thing
this child has. I have a four year college
degree. I have a very successful career. But in
the last five minutes that we've been in this
classroom, you crossed your legs, you dropped your
pencil," he went all the way down the line telling
these people what they did. He said "I hear
everything going on in that hall. I hear
everything going on inside this room." He said,
"My child is just like that." And they had a
different attitude. So he can be very effective.

Other mothers are less confident in medical

explanations, and more likely to be critical of either

themselves or their child. Both self-criticism and

criticism of the child occur in the following ADD mother's


Did knowing what was going on provide a stress or a
relief? It was a relief to know there was a name for
it, that he wasn't just mean or a bad person.
How do you think people perceive your special child?
As being unruly, dominant. They think he's a bad
influence, probably. This is my child I'm talking
about. It's horrible to think about how he is.
When you meet people socially with your child, do you
usually tell them about the problem ? No, I enjoy
telling people. Because I don't want to people to say,
"Look at that mother, she can't handle her child." I
don't enjoy it. That's not the right word to say. But
I want people to know that he has a problem, it's not
just that he's bad. Because he's not bad. You know, I
don't want them to think he's bad, like everybody does.
I want them to know there's a reason for it. I mean, I
don't walk around and tell everybody, but the people
I'm close to. Put a banner on the house. [AD-02]

Challenges to Mother's sense of well-being in ADD

There is abundant evidence in the literature that with

ADD, there are often other family members with mental health

problems (Barkley et al., 1992). Mothers of ADDH children

reported higher depression scores and higher alcohol

consumption than the mothers of normal children did in the

study by Cunningham, Benness, and Slater (1988).

There were no interview questions specifically relating

to parental mental health or alcoholism. In spite of this

there was a clear pattern of ADD mothers who were medicated

for depression, and even more who were negative and

depressed in their affect. Several instances of actual

child abuse within the families were recounted. Even in

those families that appeared to be managing well, comments


Well, I can get, you know. I'm not proud of it. No
one ever called HRS. I remember, though, bless her
heart. I was [involved in a support group] and there
was a lady who came in, someone did call HRS on her.
She was hitting the kid in the car and somebody drove
by and got her license plate number and what a mess,
you know. [AD-14]

Although ADD mothers did not report more health

problems, they did consistently list physical and emotional

exhaustion. The most trying time for most mothers seemed to

be the late preschool years when "the terrible two's never

ended." Quite subjectively, the researcher perceived a

greater dissatisfaction with their marriages than the CF


group. The only divorces or separations discussed in the CF

group that were attributed in some part to child stresses

were in families with a suspected ADD child. In that case

the ADD behavior was singled out as the problem. In the ADD

group each reported divorce was believed to be influenced by

ADD's demands on the family. In both groups there were a

couple of re-marriages, where the mother was now married but

a divorce was attributed in some part to the child. Past

divorces or separations were not considered in this

analysis. No attempt to lend tangible support to this theme

was successful. In attempting to count mentions of their

spouse in the interview and mentions of the spouse as a

support on the social network list no clear pattern emerged.

ADD and the Health Care System

Not reported in this paper are a number of involved

stories in response to "Tell me the story leading up to your

child being diagnosed with ADD." Not only did ADD parents

consistently get told that their child would grow out of it,

or that it wouldn't be a problem if they were more

consistent with discipline, but many spent one to five

years, usually beginning when the child was about four,

going from physician to psychologist to psychiatrist to

neurologist and so on before finally having someone affirm

that their child was atypical and that the problem was not

exclusively poor parenting. During the lengthy search for

an explanation for their child's unusual behavior, two

mothers reported incidents of child abuse and several

children were held back in school.

ADD is a disputed, and perhaps excessively used

diagnosis, but the medical literature affirms its existence.

The hesitation of primary care providers to refer for

testing, to routinely screen, or at least to screen at the

parents request is not explained. Mothers reported

difficulty getting their health insurance to pay for ADD

interventions. Is the lack of action on the part of primary

care persons a lack of knowledge, or a concern about


One explanation for lack of testing in the public

school systems was offered by a school system employee with

an ADD child:

When a mother asks me about that, I tell them that I
don't mind the label for the future, because when my
kids get to be college age, they're going to need the
tutor, they're going to need the smaller classrooms,
they're going to need the oral tests to get through
college. And that's where that label is going to come
in handy. That's where I'm going to use that label
more than anything. And I've had public school people
tell me, "But don't you know, if you tell a mother that
the kid's ADDH, that means that they will get $300 a
month in SSI. Is that where you want your tax money
going?" [AD-06]

This topic clearly warrants further research.

Perception of Antagonism by the Health Care Establishment

In both samples there were a few families that seemed

very marginal in both their attitudes toward intervention

and the stand they took to advocate for their child. The

following excerpt from the data presents a mother's social

construction of her family at odds with the health care


They do not seem to try to understand G.'s .
problem. G. had major sinus problems when he was
starting school when he was five and a half, six. They
found polyps growing out of his nose and come to
find out G.'s sinuses were totally blocked all through
his head even in back of his eye So they went in
and microscopically laser went in and opened up all of
those drains and put new drains in his face going from
each sinus over and also down through his lips .
And G. doesn't, they won't believe me, G. doesn't smell
very well And of course in that sense, he
doesn't taste very well. So he just hasn't got an
appetite. That's just the way it is. And they have
seemed to want to blame that on a psychological
problem. they've never tested his taste, they've
never tested his sense of smell and tried to relate
that They've tried motivation, they've bribed
him, they've given him money to eat, which is against
how I believe, you know, and I've asked them to try a
gastric tube. [CF-21]

Up until this point we have a mother recounting the

history of her son's eating problem. Clearly, she believes

that the problem is biologic and that the best answer is to

just tube feed him. Tube feeding a 14 year old is

considered a drastic measure by medical providers,

especially in the case of a perfectly functional child.

This family was both non-supportive and non-compliant with

health care recommendations on the basis of their beliefs.

While the health care team was presenting the gastric tube

as a negative outcome, the mother responds:

I talked to him about it. And I told him all I knew
about a gastric tube and how good it was and I
explained what a button looks like, not a big
operation, and not a big deal, and there's a lot of
kids who have gotten past this stage and grown well and
realize how good it was, and got out of it, whether it
was psychological or what it was. So two years ago, we
went for two months with him passing the tube every
night down his throat after two months of doing
this, he'd gained six pounds. So obviously it would
work. And they promised him in January they'd put it
in. Then in February they didn't, in March they didn't,
in April they changed doctors He had gone in in
April to have it put in and they weren't going to do
it. Now, I've had problems there, because they made
this child a promise and they built him up that they
would work with him if he did what they asked him to
do. Now they don't even want to talk about it .
To me, they're not dealing with the problem. The
doctor thinks I have a problem and I'm doing something
awful to my son. I mean, he's told me that I
feel like they've let him down. And they are making me
out to be the evil one for trying to force a tube in my
child. And that's so far from the truth You want
the best for your kids. And sometimes you have to
fight your way through the health care system.[AD-21]

It appears that this mother as "parent advocate"

actively defied the strategy of the medical establishment.

She is hostile and angry with talk about broken promises and

lack of sensitivity to her child. In terms of her family

"collective consciousness," the family beliefs are

challenged. Clearly, regardless of whose side is taken, the

child is being poorly served.

In another instance, the frustration is with red tape.

In this story the results of professional inattention were


We were consistently told that [he'll] outgrow it. He
had a wonderful kindergarten experience. The teacher
suggested that he be tested for a learning disability
and gifted program. The paperwork got lost. First
grade came, the teacher said, "Oh, he's just a little
behind." By the end of the year, now this is going in
and telling them the history, that we know that this is
a problem, "Don't worry about it, he'll outgrow it.
He'll catch up. Boys are always a little behind." At
the end of first grade, by March of first grade, we
need to have him tested. Second grade they had not
done any of the testing and then the new psychologist
at the school who didn't know anything about any of the
things that were supposed to have been done before and
there was no paperwork. Second grade teacher said, "I
don't believe in learning disabilities. He's just lazy
and is not paying attention." By November, no October,
K-. was refusing to go to school, crying, just
depressed, miserable, unhappy. I went in and explained
to them that they had until December 31 to complete the
testing or I was going to sue them one and all. They
got the testing done. K-. was diagnosed as learning
disabled with auditory and visual processing deficits
. We met with the classroom teacher, the school
psychologist, the district psychologist, went over the
test results, and the teacher said, "But if he would
just pay attention, he could do it." We had to move
him to a different classroom. He went into special ed
an hour a day. And his confidence went up, skills
improved, no more depression, just did beautifully. He
went through summer school. The principal refused
special placement on K-.'s needs. He went into a
[regular] classroom. The first thing the teacher said
was "K-. doesn't pay attention. He's a daydreamer."
You know, "He's just not paying attention." K-. ended
up hiding instead of getting on the school bus. He
would hide under the culvert and stay there all day,
under the road instead of going to school. Nightmares,
extreme depression. We met with the teacher over and
over. We met with the principal and suggested that he
be moved to a different class. He was flunking all of
his regular classes and doing perfectly with no
problems at all in his special ed class. The two
teachers never spoke to each other. We went to our
pediatrician to try and get an evaluation because [the
health insurance company] has some additional coverages
but they have to be approved. He for whatever reason
didn't do it. K-. became extremely depressed. I called
the pediatrician and said, "You have to get us a
referral; this child is just going to pieces." And he
said, "Okay, take him to the emergency room, tell them
that he's very depressed and you want a referral for an

evaluation. Because that way [the insurance company]
has to respond immediately." Unfortunately, the
emergency room doctor decided that K-. needed to be
[involuntarily committed] not hospitalized. He was
[committed] and sent to [a psychiatric hospital] where
he was terrified. We got him out seventy-two hours
later and have spent the last three years trying to put
the pieces back together. I mean, we could talk about
when he came home from the hospital and was a
completely different child than before. And then that
it took six months for him to be able to feel safe
enough to tell us that they had done a sleep deprived
EEG and took him in a room and set him up on a wooden
chair and strapped him in and hooked all the electrodes
to him and because of his auditory processing deficits,
he thought he was going to be electrocuted for not
going to school I have a certain hostility.
Prozac has been helpful. There's a whole world of
things that can go wrong that you never would suspect
and it's very frustrating. We are now, after three
years, and one month, finally being able to deal
directly with things that have to do with attention
deficit disorder. So it's been somewhat stressful.[AD-

Adolescence and Chronic Disability

In both subject groups the focus of mother's concerns

changed at around the age 14. At that point the children

began to deny their disorder existed, often refusing or

balking at medical interventions. This was especially

worrisome to CF mothers because adolescence also coincided

with an exacerbation in the child's health problems.

A recurrent concern was children assuming

responsibility for their own medical care. Several of the

mother's interviewed expressed that their CF children did

poorly in school, but that no more could be expected of them

with their frequent illnesses. With the increasing life

span of children with CF, it is expected that more parents

will face the dilemma of this mother of an 18 year old

daughter with CF.

I do think that any time you have a worry about an
illness with a child, that's got to be a big stress. I
mean, it's a given. Just from pure wondering how long
you're going to have this kid, whether you can make
them capable of taking care of themselves. Because I
think the ultimate for any parent is to want your child
capable of taking care of themselves. And you have
this realization this may not be possible, so how are
you going to provide for that when you're not around.
And especially with an only child. No siblings. You
think, "Okay, who is going to end up with this kid and
how is that going to affect their lives." If they do
make it, or if I were killed in an accident, that's a
worry for me now. Because I'm down here, [her
father's] up there and if she's going to be living
here, my parents are in their seventies, you know if I
were killed, how is that going to work out? So it's
things like that. They lay there, but you think,
"Okay, what do I do?" And so, I don't know. I mean,
you don't really to throw it at another relative. They
have their own kids, their own lives, whatever. But
you don't want your kids taken care of by the state in
some way, shape, or form, and by that time she will be
twenty-one and who's going to care? You know, they'll
see her as an adult. So the ways the laws are set up
to care of adults with this kind of illness, they say,
well, she'd have to live on her own in order to collect
or be in an apartment. Well, what if she's sicker.
Then what? You're telling me I can't take care of her
because she's got to live over here and I've got to
live over there? So what? I have to rent an apartment
in order to make it look good? So it's just added
stress and it shouldn't be. And yet it's the way the
system's set up. It's not a system that works for you.
It works against you. So it just creates more

With ADD, the problems were more typical of the

problems faced by other parents of adolescents, only larger.

Each ADD parent has heard how much higher the chance is that

their ADD child will take illegal drugs, get in trouble with


the law, have an unplanned pregnancy, develop a psychiatric

problem or be unemployed.

How did your major concerns about your child seem
different when she started to school? Yes. When we
started out, we were dreaming of a neurophysicist prima
ballerina. And now my goal is get to age 18 with no
grandchildren with a high school diploma and no
addictions to anything. That's my goal. Very simple.

As with CF, many of the adolescents with ADD began to

refuse medication. In this case it was easier because ADD

is not fatal. In late adolescence (from about 16 years)

many parents felt a relief from the stresses of parenting.

These mothers reported that the child was becoming

responsible and in making decisions like refusing medicines

would feel the impact of those decisions very directly.

Whether the lessening of parental strain is due to the

child's maturation or to the parents' ability to step back

and say "its out of my hands," unlike typical parents, some

ADD parents feel less strain at this age.

Siblings and Chronic Disability

The theme was poorly developed because it was not a

consideration in the research question. Sibling

interactions illustrate an instance where the ADD and the CF

groups divide distinctly. Both groups of mothers

occasionally mentioned sibling conflict or jealousy. This

conflict was most common in the adolescent years, but in

some cases began quite early in the child's life. In

general sibling conflict was both more common and more

severe in ADD.

The CF siblings tended to have problems like those

described by Mulder and Suurmeijer (1977) for siblings of

children with epilepsy. The tension between siblings is

believed to be the result of the parents' psychological

stress and fear for the impaired child. They report that

"mothers, and to a lesser degree fathers, tend to become

overprotective. These children are relatively isolated

socially, and have lower expectations for the future and

curtailed scholastic behavior" (Mulder & Suurmeijer, 1977,

p. 13).

The problems of the ADD siblings are more related to

the social behavior of both children. ADD behavior is both

embarrassing and threatening to siblings. Siblings who

stand out negatively in social situations also draw negative

attention to the unimpaired sibling.

[The older sibling] is embarrassed by S-. She keeps
her friends away from S-. They are sisters, but they
are not friends. They may never be the fights
are awful. So she and S-., hopefully by the time
they're adults, they'll be friends. But they're not
friends now. [AD-12]

The other big source of conflict is that amount of

parental time and lowered performance focused on the child

with ADD. Several mothers mentioned these problems in their

household. While it was a small problem for mothers of

elementary school-aged children, the problem seems to grow

through adolescence.

K-. thinks she [gets less attention than she needs].
This is the child that consumes most of the family
income with her horses. She still gets jealous of
little things I do for S- But if I bring S-.
something, I better bring K-. one or maybe both. And
now K-.'s 17 and it's very hard, she's the very hardest
one. And so K-. needs her fair share of everything.
Even though I know that she gets enough love and
attention. She's always watching what I do to see what
she gets.[AD-12]

When two children are very close in age and one or both

have ADD sibling problems abound. In this sample several

mothers described siblings picking on each other and

siblings being ignored because of the demands of the

impaired child.

Do some of the people in your family seem to need more
attention than they are getting now? Probably my
daughter. She really gets robbed. She needs some more
love. Just some more. You get mad it him for
something and it carries over to her, and if you
weren't irritated with him, you probably wouldn't let
whatever little things she does bother you. So she
probably loses out.[AD-04]

Because my kids are so different, their relationship is
very complex. I'm trying to distinguish where the ADD
lets off and just normal siblings, but I think it does.
G-., by root, is able to focus for much longer
attention spans than his brother, who's two years older
than he is. D-., when he's in his hyperactive state,
will fight with G-. on more G-.'s level, physically,
where I think if he wasn't [ADD], and he didn't have
that component [hyperactivity], he would just be able
to blow it off easier. So I think there are definite

Have these concerns changed since your child's
disability was identified? Sibling kinds of stuff. I
mean, when I see siblings that actually get along, it's
like, oh wow, what would that be like. Because mine
are always fighting. Between R-.'s tactile
hypersensitivity, and I mean, she has started her


menstrual cycle, and about five days before, during and
five days after, you don't get near her. I mean,
between the tactile stuff and all the other raging
hormone stuff, you just don't get near her. So her
brothers get floored. I mean, they're picking
themselves up off the floor one of the reasons
why we went ahead with the Ritalin was because of the
other kids in the family. One of the reasons why we
keep P-. on Ritalin on Saturday and Sunday is because
of [younger sibling] and the other kids in the family.
Because they get very physical and I think that's
probably my biggest concern [AD-06].

Little research has been conducted on the effects of

ADD on siblings. This study indicates that sibling

relations have a large impact on the mother's perception of

personal control, of herself as a mother, and on the sense

of well-being in the household. This topic also warrants

further study.

Special Issues and Ethical Concerns

Mothers who chose to participate in this research were

often quite candid in discussing difficult and intimate

thoughts. In order to help participants feel comfortable I

met with them wherever they requested. While some mothers

were most comfortable at home, others pointedly did not want

me in their home. I dressed casually for interviews and

tried to maintain an easy conversational style. In some

cases the child was present at the interview. In those

cases I tried to be sensitive to the parent-child

relationship and was less probing with my questions.

I assured all of the mothers that names and identifying

information would be altered during the write-up of this

research. I also emphatically stated that the only persons

to actually hear the transcripts would be myself and the

transcriptionist. At any point a mother could refuse to

answer a question or avoid a topic. Many subjects seemed

uncomfortable with questions about family income. In those

cases I explained how the income information was going to be

used and assured them of confidentiality.

Some of the mothers expressed concern about my

reactions to their responses. They would say You're not

going to like this. .. when criticizing their

occupational therapy home programs or "I'm really not a bad

mother." In all cases I tried to remain positive and

encouraging. In all cases I assured them that there were no

wrong answers, that the study was about how they perceived

things, not about other peoples' ideas.

After the initial questions about income, no mother

expressed discomfort with my questions. Some were highly

self-critical but seemed comfortable with me. If a mother

knew I was an occupational therapist and had specific

questions relating to that I did answer them. When asked if

their comments were similar to other people I generally said

"yes." Only in the instance of the CF mother whose child

was not eating did I deviate. I hoped to help her establish

a mediator between herself and the pulmonary clinic. I


offered her the names of several people at pulmonary clinic

who were persistently identified as "wonderful" by subjects

in this study.

Several mothers reported a history of actual or

suspected child abuse in the home. While this information

was included in general terms, none of the specific child

abuse stories were included in this paper. Any references

to child abuse extracted from the transcripts for this paper

have been significantly changed to protect the anonymity of

the mother and child.

On a few occasions there were inconsistencies in the

mother's stories. One mother introduced a gentleman as her

spouse and named him as one of the adults in the home early

in the interview, only later to list him as her boyfriend

who lives three miles down the road on the social network

list. In this and similar cases I recorded the mother as

married, because that is how she described herself, and

treated the "boyfriend" as spouse on the social network


In the lower income ranges, especially in the CF groups

there was a lot of inconsistency in reporting income. By

looking at all the cases receiving public support it was

fairly easy to discern SSI disability payments to the

family. Using the families who reported exact figures for

all sources I established general income figures for the

families on public support that was consistent across this


sample. The mean of my estimated figures is higher than the

actual figures provided, but is believed to compensate for

the vagaries of reporting in this group.

All of the research data were obtained by parent

report. I did not cross check or verify any information

with the medical records. I took this stand because it was

the mother's perception I was looking for. At first I noted

the mothers affect in my interview notes, but discontinued

this process because I was not confident in either my

objectivity or the utility of that information. In fact, I

could not help but hear some of the comments of health care

providers about how crazy, or non-compliant, or great some

mothers were.

Because of my emphasis on mothers report, it was

suggested by one of my expert reviewers that ADD children

with other psychiatric diagnoses were not accurately

represented in the group. She commented that a child with

ADDH and conduct disorder would be far more disruptive in

the home than a child with ADDH. Only one mother reported

conduct disorder when asked if her child had any other

diagnoses. Although it was not reported, there were

certainly at least a couple of other children with

additional mental health diagnoses in the sample. This is

an important consideration, especially in my intra-group

comparisons of ADD. The differences between the biological

families and the adopted families discussed in the next


chapter may be moderated by a consideration of the presence

of any other childhood mental health condition.


The analysis stage of this research could not be

discretely identified. Some analysis took place during the

interviews as I made decisions about what topics to pursue

and how to structure probes. I made analytic notes to about

concerns or issues to consider in later interviews. For

example, in many of the early CF interviews the child was

present and it was difficult getting past the "we're a

happy, normal family" line. Whenever possible later

interviews were conducted outside of the child's hearing.

The imbedded coding and additional analyses needed to make

and validate statements of relationship were completed after

the interviewing was complete and the transcripts were

available to code. There was a tremendous volume of

interview data. There was 600 to 700 pages of interview

transcripts and about 10 pages of analytic notes. I assumed

theoretical saturation had occurred when the interviews

revealed no new concepts or challenges. Data analysis

included constant comparison within and across cases. The

focus of this chapter is the analysis of data related to

existing social theory.

RMFSA Constructs

The adaptation phase of the RMFSA begins at the level

of the family's adaptation over time to recover from the

"crisis" of chronic disease and/or the family's transition

back into a crisis situation. This level of adaptation is

brought by the subject to the interview and is treated as

exogenous to the interview. Specifically, interview data

included both the child's age at diagnosis and the history

of the child's diagnosis. The responses to these questions

were consistent within each disability group. Most of the

children with CF were diagnosed in the first year of life

(mean age six months) and the period of dealing with the

problem was short and intense. The mean age of diagnosis in

the ADD group was six years. The youngest that a child

received the ADD label was four, and the latest that any

child in the sample was labeled was 15.

Thus, families dealing with CF had had several years

prior to this interview to adapt to the problem. Families

with ADD had far less time, and in three cases a younger

sibling of the ADD child targeted for the interview was

diagnosed at or near the time of the interview. For this

reason alone, the CF group as a whole is more likely than

the ADD group to have normalized the care of their child.

Family Demands

Each subject brings to this research a unique history of

stresses. The mother's demands were gathered using the

following question:

Have there been any big events in the past couple of
years that affected your family like:
A family member gave birth to or adopted a child.
A family member stopped working, lost or quit a
A family member started or returned to work.
Family moved to new home/apartment.
A family member, relative or close friend became
seriously ill or injured.

In the analysis no attempt was made to weight the relative

severity of the stressors listed. Any demand identified by

the mother was coded in the interview. Open-ended questions

about perceived demands follow.

Are there additional physical demands on you in dealing
with your special child?

Are there additional emotional demands on you in
dealing with your special child?

Do you think that dealing with the pressures of having
a child with special needs has led to: Increase in
conflict or arguments? Increased difficulty with
people at work or dissatisfaction with job/career?
Increased time spent at home, rather than doing things
outside the home?

Can you think of specific ways that [special child] has
affected your family: Finances? Marital/romantic
relationships ? Sibling relationships ? Communication
with spouse? Vacations/social outings? Child care?
Extended Family?

Do you think that dealing with the pressures of having
a child with special needs has led to actual and/or
threatened violence in the home?


Comments related to any of these specific topics, both

general and child related, were coded and counted as

demands. Other data coded as demands were: presence of a

pre-school child (under five years old), a teen-ager (14 to

18 years old') in the home, only one resident adult, mom-

managed interventions such as tutoring or IV therapy,

sibling conflict, other medical diagnoses of any family

member, and a difficult child (ADDH or fragile CF). The

distribution of demands is presented in Figure 5.

The summary statistics for this data are presented in

Table 5. Respondent 5 in the CF group is the family with

three CF children. Although the general pattern is

consistent, the presence of this outlier minimizes the

differences between the two sample groups.

Total number of demands were higher in the ADD group.

The number of general (non-child related) demands was very

similar in the ADD and CF respondents. A greater percentage

of general demands should be seen among CF mother's because

of their lower family income. The observed difference

between the two groups was minimal. This CF population may

differ from the general population because for this sample

low income is not tied to a lack of health care services for

their child.

'Fourteen was used because it is the youngest age child
with which any mother in this sample complained of problems
with compliance on their medical regime.

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Table 5 Summary of Demands
General Child Demands Total Demands
Listed Child Demands* All Listed Demands
Sum:73 Mean:3.17 Sum:134 Mean:5.83
STD: 2.29 STD:2.66
MEAN: 2.65 SUM: 105 SUM: 166
STD: 2.00 MEAN: 4.57 MEAN: 7.22
STD: 3.82 STD: 4.24
Child Demands Reported & All Demands reported &
Hospitalization** Hospitalization**
Sum:137 Mean:5.96 Sum:198 Mean:8.61
STD:3.60 STD:3.89
MEAN: 2.41 SUM=139 SUM=192
STD: 1.59 MEAN: 6.32 MEAN: 8.73
STD: 2.68 STD: 4.94
This row lists non-intervention demands named by the
** This row includes all listed demands, therapies, and
hospitalizations (hospitalizations are counted as reported
or, when there is no report, counted as two per year).

The ADD subjects reported about one and a half more

demands than demands reported by the CF subjects. Of the

total demands reported by the ADD group, about 72% were

specifically attributed to demands of the child (or

children) with ADD. ADD families had nearly 9% higher

disability specific demands than the CF group. This

difference is illustrated in Figure 6. The representation

of data on demands and social network in Figure 6 is

2This does not include all likely hospitalizations.
This is problematic because it probably under-represents
demand. However, only 5 of 23 families actually mentioned
hospitalizations when asked about demands. It seemed
inappropriate to count those 5 hospitalizations and not the
others. It seemed equally inappropriate to add a
hospitalization demand to each CF interview. This issue
will be discussed further later in the text.



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consistent with the research finding that "compared to

parents with normally developing children, parents with

externalizing children reported more negative impact on

social life, more negative and less positive feelings about

parenting, and higher child-related stress" (Donenberg &

Baker, p. 179).

Family Resources

Family resources considered in this study are: the

availability of health care reimbursement, family income,

and personal support networks.

Income. As presented earlier in Table 2, the mean

income for CF families is nearly $28,000 per year less than

the ADD group. The standard deviation in both groups is

very large. For this reason the median incomes will be used

as a summary statistic in the analysis of family resources.

Median income is a better indicator of family resources

because it is not influenced by extremes in the sample.

Twenty six percent of families in the CF group, including

the family with both a CF and an ADD child, rely solely on

public support. In the ADD sample, only the family with

both a CF and an ADD child relies on public support.

Social-emotional Support. Information about who

provides anything perceived by the mother as help or support

was obtained at the end of the interview. Any person

mentioned during the interview as helpful was included on

the social support list, if they were not already listed.

Two of the CF mothers did not complete this part of the

interview due to time constraints, these two transcripts

will be eliminated from the analysis. The social network

list was introduced with the comment:

Please tell me who has been important or helpful to you
in dealing with your child's special needs. This may
be a family member, a friend, a neighbor, or a
professional such as a nurse or minister.

Mothers were not prompted to reply in any particular manner.

If a mother asked a specific question about who to include,

she was instructed to include anyone who helps her deal with

the demands of raising a child with (CF or ADD). Figure 6

presents the distribution of the social network information

comparing the ADD to the CF groups. Table 6 summarizes this

data. Figure 7 compares the individual responses in each


The category "other" includes health professionals,

clergy, teachers, and any other individual mentioned who did

not fit in other categories. The category "under-estimate"

was used whenever a mother listed a large group of people or

a non-acquaintance as a support. For example, many CF

mothers listed "the whole pulmonary team at Shands." Also

common to this category were school systems, and churches.