Puerto Rican mothers of young children with disabilities : a comparison between families living in Puerto Rico and famil...


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Puerto Rican mothers of young children with disabilities : a comparison between families living in Puerto Rico and families living in Florida
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Reyes-Blanes, Maria E., 1956-
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Table of Contents
    Title Page
        Page i
        Page ii
        Page iii
    Table of Contents
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    List of Tables
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    List of Figures
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    Chapter 1. Statement of the problem
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    Chapter 2. Review of related literature
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    Chapter 3. Methods and procedures
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    Chapter 4. Results of the study
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    Chapter 5. Discussion of the results and implications for further research
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    Appendix A. Consent forms
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    Appendix B. Assessment instruments
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    Appendix C. Visual aids
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    Appendix D. IRB approval
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    Biographical sketch
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Full Text









Success is only meaningful when shared with
those that have made it possible.

I would like to extend my deepest gratitude to all those

who provided me with the encouragement, assistance, and

support necessary to attain this goal. It is impossible to

thank everyone who assisted me in one way or another to make

this whole process bearable, yet worth attempting.

First, I would like to express my appreciation to the

University of Florida Special Education Department. This

beautiful group of people included faculty, support staff,

doctoral students, and alumni, especially to Dr. Jordan, Dr.

Lane, and Dr. Beverly, all with whom I experienced the

meaning of caring, endurance, and humor.

Special thanks go to my immediate support group--Dr.

Vivian Correa, my mentor and friend, whose expertise and

guidance helped me in making the right decisions; Dr. Mary

Sue Rennells who, with affection and patience, assisted me in

the challenging process of professional writing; Dr. Rapport

whose technical assistance was highly valuable; to all my

committee members, Dr. Miller, Dr. Sindelar, Dr. Mercer, Dr.

Reichard, and Dr. Harper, who were examples of high levels of

professionalism and commitment to education. Thanks also go

to Shaira, Patty, and Sheryl who became my hands, eyes, and

mind when things were really hectic. Thanks also go to

Mariela and Blanqui, whose assistance in Puerto Rico

certainly made the difference.

To the Latino Family Research Project staff and

directors go a million thanks. Without their support this

task would have been unbearable. Special thanks go to Dr.

Don Bailey for the trust he placed in me.

To my children, Maria Elise and Rafael Angel; my

husband, Rafael; my parents; and all other members of my

immediate and extended family, thank you for bearing with me

in such difficult times. Once more it has been proven that

everything is possible if we trust ourselves and have faith

in God.

Finally, I would like to thank my friends for making me

realize that there are many risks in life worth taking and

for encouraging me when I needed it the most.

It is difficult to express my feelings of gratitude in

just one word, but to all I want to say





ACKNOWLEDGMENTS .......................................... ii

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

LIST OF FIGURES .......................................... ix

ABSTRACT ................................................. x


ONE STATEMENT OF THE PROBLEM ............................ 1

Introduction ..................................... 1
Rationale for the Study .......................... 2
Research Questions ............................... 4
Procedures ....................................... 5
Scope of the Study ............................... 7
Definition of Terms .............................. 8
Overview ......................................... 10

TWO REVIEW OF RELATED LITERATURE ....................... 11

Introduction of Related Literature ................ 11
Criteria for the Selection of Literature ......... 11
Theoretical and Conceptual Foundation ............. 12
Family Systems Theory .......................... 13
Family Needs and Resources ....................... 18
Families of Children with Disabilities ............ 19
Family Needs ................................... 22
Summary of Needs Perceived by Families of
Children with Disabilities ..................... 28
Family Resources ............................... 30
Summary of Findings ............................ 39
United States Changing Demographics ............... 42
Profile of Hispanic Families ....................... 43
Needs and Resources of Hispanic Families ....... 47
Summary of Findings ............................ 53
Review of Family Assessment Instrumentation
and Research Methodology ......................... 54

Family Research Instrumentation ................. 55
Family Research Methodology ...................... 57
Summary .......................................... 59

THREE METHODS AND PROCEDURES ........................... 62

Introduction ..................................... 62
Description of the Null Hypotheses ................ 63
Family Assessment Instruments ...................... 64
Unique Properties of the Research ................. 65
Participants .....................................66-
Selection of Assessment Instruments ............... 67
Family Demographic Form .......................... 68
The Family Needs Survey .......................... 69
The Family Support Scale ......................... 71
The ABILITIES Index ............................ 74
Data Collection Procedures ......................... 78
Research Instrumentation and Procedures ........... 79
Dissemination and Processing Procedures ........... 82
Treatment of the Data ............................ .83
Description and Analysis of Research Questions ... 84
Research Question 1 .............................. 86
Research Question 2 .............................. 86
Research Question 3 .............................. 87
Research Question 4 .............................. 88
Research Question 5 .............................. 88

FOUR RESULTS OF THE STUDY ............................. 90

Introduction ..................................... 90
Descriptive Information .......................... 92
Descriptive Information About Participating
Mothers ...................................... 92
Descriptive Information About the Children
Represented in the Sample ...................... 94
Analysis of the Sample ........................... 95
Continuous Variables ........................... 96
Categorical Variables .......................... 101
Description of the Scaled Scores ................. 103
Correlational Analysis of the Instruments ........ 103
Family Needs Survey ............................ 103
Family Support Scale ........................... 104
Descriptive Analysis of the Scaled Scores ........ 105
Family Needs Scale Scores ....................... 105
Family Support Scale ........................... 110
Hypothesis Testing ............................... 118
Analysis of Hypothesis 1 ........................ 119
Analysis of Hypothesis 2 ........................ 121
Analysis of Hypothesis 3 ........................ 122

Analysis of Hypothesis 4 ........................ 124
Analysis of Hypothesis 5 ........................ 126
Summary of the Findings .......................... 128

FURTHER RESEARCH ............................... 130

Summary of the Study ............................. 130
Discussion of the Results ......................... 132
Discussion of Participating Mothers ............ 133
Description of the Children Represented in
the Sample ................................... 136
Discussion of the Scaled Scores ................ 138

Discussion of the Hypotheses .......
Hypothesis Testing .................
Research Question 1 and Hypothesis
Research Question 2 and Hypothesis
Research Question 3 and Hypothesis
Research Question 4 and Hypothesis
Research Question 5 and Hypothesis
Implications of Research Findings ..
Limitations of the Present Study ...
Recommendations for Future Research
Summary ............................

.............. 149



A CONSENT FORMS .................................... 174

B ASSESSMENT INSTRUMENTS ........................... 177

C VISUAL AIDS ........................

D IRB APPROVAL .......................





BIOGRAPHICAL SKETCH ...................................... 203


. . . . . .o
....... ....


... .........
....... .....


Table Pafe

3-1 Summary of Instrumentation ......................... 77

3-2 Matrix of Independent and Dependent Variables ... 84

3-3 Summary of Research Questions, Instruments,
and Statistical Analysis ........................... 85

4-1 Descriptive Information on Families' Marital
Status and Government Assistance .................. 93

4-2 Descriptive Information Families' Level of
Education ....................................... 95

4-3 Description of Children Population ................ 96

4-4 Comparison of Geographical Subgroups .............. 97

4-5 Descriptive Statistics for the ABILITIES
Scale by Geographical Cohort ....................... 99

4-6 Comparison of Geographical Subgroups ............. 101

4-7 Analysis of Government Assistance by Marital
Status .......................................... 102

4-8 Correlation Matrix for the FNS .................... 104

4-9 Correlation Matrix for the FSS .................... 105

4-10 Descriptive Statistics for the FNS; Florida
Cohort .......................................... 106

4-11 Descriptive Statistics for the FNS; Puerto Rico
Cohort .......................................... 107

4-12 Descriptive Statistics for the FSS; Florida
Cohort .......................................... 114

4-13 Descriptive Statistics for the FSS; Puerto Rico
Cohort .......................................... 114


4-14 Source Table of Multiple Regression Analysis
Hypothesis 1 .................................... 120

4-15 Parameter Table of the Multiple Regression
Analysis of Hypothesis 1 .......................... 120

4-16 Source Table of Multiple Regression Analysis
Hypothesis 2 .................................... 122

4-17 Parameter Table of the Multiple Regression
Analysis of Hypothesis 2 .......................... 122

4-18 Source Table of Multiple Regression Analysis
Hypothesis 3 .................................... 123

4-19 Parameter Table of the Multiple Regression
Analysis of Hypothesis 3 .......................... 124

4-20 Source Table of Multiple Regression Analysis
Hypothesis 4 .................................... 125

4-21 Parameter Table of the Multiple Regression
Analysis of Hypothesis 4 .......................... 126

4-22 Pearson Correlation Coefficient: Analysis
Hypothesis 5 .................................... 127



Figure Paae

2-1 Family subsystems .............................. 14

2-2 The boundaries and interactions between system
levels ......................................... 15

2-3 Piled up family needs .......................... 17

2-4 Family balance .................................... 18

3-1 Analytical model .............................. 89

4-1 Percentages of scores 3 or higher--Family
Support Scale ................................. 100

4-2 Percentages of #2 scores--Family Needs Survey il

4-3 Percentages of #2 scores--Family Needs Survey 112

4-4 Percentages of scores 3 or higher--Family
Support Scale ................................. 117

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



Maria E. Reyes-Blanes

August, 1996

Chairperson: Vivian I. Correa
Major Department: Special Education

The purpose of this study was to examine the

relationship between family needs and sources of support

perceived by Puerto Rican mothers of young children with

disabilities with factors which may mediate these family

needs and resources. The family systems theory was used as

the theoretical framework of the study. The sample was

comprised of 94 Puerto Rican mothers [55 residing in Puerto

Rico (PR) and 39 residing in Florida FL)] whose children with

disabilities were receiving services from local Departments

of Education, Health, and Rehabilitative Services or from

private organizations. The Family Needs Survey, Family

Support Scale, ABILITIES Index, and a questionnaire of

mothers' demographic information were completed by mothers

during an interview.

Data analysis was divided into three phases. First, the

similarity of the two geographical subgroups (PR and FL) was

explored using Chi-square and t-tests. Second, correlational

analyses were used to examine the independent variables.

Finally, Multiple Regression analyses and Pearson Product

Moment Correlations were conducted to test the hypotheses.

Research findings yielded no significant difference

between family needs of mothers in the PR and FL cohorts.

Conversely, mothers from the PR cohort perceived

significantly more sources of support than mothers in the FL

cohort. Perceived family needs were related to the child's

ABILITIES score and the mother's marital status. Family

sources of support were also related to mother's marital

status. A significant and inverse relationship between

perceived family needs and family sources of support was

determined for the total population and for the PR cohort.

This relationship did not hold true for the FL cohort.

Overall, mothers expressed a similar pattern of family

needs and sources of support. Family needs were identified

at all levels of the family system with a higher need for

information and community services. Mothers identified their

formal kinship and professionals as major sources of support.

Findings suggest the need to assist these families in

developing and strengthening their network of support at all

levels of the family system. This knowledge will enable

service providers to provide appropriate early intervention

to the growing population of Puerto Rican children with

disabilities and their families.




Families play a crucial role in the growth, development,

education, and general well-being of children. This

fundamental unit of society represents the main source of

satisfaction of physical and socioemotional needs and the

upbringing, growth, and development of children.

Consequently, family well-being is essential for the

development of appropriate biological, social, and emotional

environments in which to raise healthy children and ensure a

better future society.

During the past three decades American families have

experienced dramatic changes in structure, roles,

responsibilities, and demands (Hamburg, 1992). This

evolution happened simultaneously with the startling increase

of teenage pregnancies, drug-exposed babies, and the growth

of culturally diverse families living in poverty (Williams,

1992). Family changes are of increasing concern for family

interventionists as these could translate into an increase on

the number of children with disabilities or at risk of


Families of children with disabilities face more

challenges than families of children with a typical

development (Turnbull & Turnbull, 1986). The presence of a

disability in a family member impacts the whole family

system. Family members are interrelated as parts of a whole

(Whitchurch & Constantine, 1993). When a child with

disabilities is born to a family of a cultural and ethnic

minority, the family faces unprecedented demands. Families

must struggle to satisfy the primary needs of their members

and provide for the special care of the child with

disabilities. Cultural and language barriers add to the

numerous family demands. Failure to assist these families in

their endeavor to satisfy their demands may have a social

impact. Fortunately, there are promising lines of inquiry

and practices that can enhance parenting skills and help

parents obtain the emotional support, health care, and the

educational and social services necessary for their children

and themselves.

Rationale for the Study

The way families deal with the presence of a child with

disabilities in the family varies, particularly across

cultures (Groce, 1990; Groce & Zola, 1993; Sheer & Groce,

1988). However, much of the research on families of children

with disabilities has focused on European-American families

(Bailey & Simeonsson, 1988; Bailey, Blasco, & Simeonsson,

1992; Dunst, Trivette, Hamby, & Pollock, 1990). The extent

to which family needs and help-seeking behavior are related

to cultural characteristics of families is uncertain.

Empirical data to document the influence of cultural factors

on family's needs and resources are lacking. The limited

studies on Hispanic families (Heller, Markwardt, Rowitz, &

Farber, 1994; Mary, 1990) have focused on intracultural

differences leaving a gap on the full understanding of any of

the distinct cultural groups (e.g., Mexicans, Cubans, Puerto

Ricans) lumped into the Hispanic category. The next logical

step in research on Hispanic families is to examine families

of a distinct Hispanic group and focus on within-culture

variability by addressing the possible impact of migration

and acculturation on their family systems.

The purpose of this study was to compare family needs

and resources among Puerto Rican families of young children

with disabilities that reside in Florida and those living in

Puerto Rico. Such a comparison provides information about

the availability and quality of services rendered to these

families while depicting the nature and uniformity of

services and procedures that are warranted under federal

regulations that govern both geographical areas. Exploring

differences and similarities between these families enhances

the provision of services according to perceived parental

priorities. The identification of the family's network of

support also assists interventionists as they assess and

access family resources.

A descriptive and comparative analysis was done for both

geographical groups (i.e., families in Puerto Rico and

Florida). Reported family needs and resources were

identified, quantified, and analyzed to determine their

perceived impact on family life.

Factors identified by researchers as affecting the needs

and resources experienced by families of young children with

disabilities were identified for both geographical subgroups.

The effect these factors had on family needs and family

resources was explored. The relationship of needs and

resources was also examined to determine any predictive value

within geographical subgroups.

Research Questions

The study explored the following questions:

1. Do Puerto Rican mothers of young children with

disabilities who live in Puerto Rico identify different

family needs from those expressed by Puerto Rican mothers of

young children with disabilities who reside in Florida?

2. Do Puerto Rican mothers of young children with

disabilities who live in Puerto Rico identify different

family resources or sources of family support from those

expressed by Puerto Rican mothers of young children with

disabilities who reside in Florida?

3. What family dimension variables significantly

predict family needs and resources pooled within geographical


4. What relationship if any exists between family needs

and family resources within each geographical subgroup?


The procedures for implementing this study followed

three phases. The initial phase involved the recruitment of

potential participants through school districts, health and

rehabilitative services, and private organizations. Efforts

in this initial phase were first devoted to the recruitment

of Puerto Rican mothers of young children with disabilities

living in Florida. During this initial phase, staff at

school districts, early intervention programs, and private

organizations collaborated by distributing to mothers a

packet of information about the study. A brochure explaining

the purpose and nature of the study and a consent form

allowing the researcher to contact the family for

participation were included in the packet. Information about

the project as well as documents to be distributed or used by

mothers were available in both Spanish and English.

Mothers who sent their consent forms indicating their

willingness to participate were contacted by phone to

schedule the interview. Other mothers gave their verbal

consent to the service provider or contact person and were

then called by the researcher. Participants were offered

$12.50 per hour for their collaboration in the research


Interviews were held at either the mother's home,

schools or centers, or another location preferred by the

mother. A consent letter explaining the measures taken to

protect the participant's identity, the use of a tape

recorder, and mother's right to finalize the interview or

refuse to answer a question was signed by the mother prior to

beginning the interview.

A demographic information form and three questionnaires,

the Family Needs Scale (Bailey & Simeonsson, 1990), which

measured mothers' perceived demands on the family, the Family

Support Scale (Dunst, Trivette, & Deal, 1988), which measured

mothers' perceived resources, and the ABILITIES Index

(Simeonsson, & Bailey, 1988), which measured the extent of

delay of the children as perceived by their mothers, were

used. Interviews were recorded to ensure reliability and

capture the richness of the interview process.

A separate and confidential list of participants' names,

addresses, and phone numbers was maintained under each

participant's assigned identity code. Within a 2- to 3-week

interval after the interview a thank-you letter accompanying

the check was mailed to each mother.

The second phase of the procedures used to implement the

study replicated the first phase with the alternate

geographical group. The recruitment process for Puerto Rican

mothers living in Puerto Rico was initiated simultaneously,

but it was not until the middle of the initial phase when

traveling to the island was possible for the researcher.

Recruitment efforts and interviews were coordinated with a

research assistant who was finishing her major in early

childhood education and was trained by the researcher.

During the third phase of the study, interviews were coded

and analyzed with regard to the research questions.

Scope of the Study

The scope of the study was delimited by the ethnic

specificity and characteristics of the participants, the

recruitment methods, and the instruments used. Limitations

are described below.

1. Data were collected from Puerto Rican mothers of

young children with disabilities. Results, therefore, are

not generalizable to any other cultural group or any other

population even among those considered Hispanics. Results

are based on mother's responses and are thus not

generalizable to fathers, grandparents, relatives, other

custodial parents; mothers of children without disabilities;

or mothers of older children.

2. Information about the study was disseminated through

three channels: school districts, early intervention

programs, and private organizations serving as support groups

for families. Mothers not involved with these agencies were

not represented in the sample. Although a stratified sample

regarding socioeconomic and marital status, level of

education, and extent of developmental delay of the child was

achieved in the recruitment process, randomized selection of

participants was impossible.

3. The use of a Likert scale to quantify mothers'

responses delimits their expression and may affect the

accuracy of their responses. Mothers were asked to choose

the response that best represented their perception of their

family's needs, resources, and the extent of delay of their

child's development.

Definition of Terms

The following definitions are used throughout this


Disability was defined as a developmental delay measured

by appropriate diagnostic instruments and procedures used to

assess the cognitive development and one or more of the

following areas: (a) physical development, including vision

and hearing, (b) communication development, (c) social or

emotional development, or (d) adaptive development. All the

children represented in the sample experienced cognitive

delay as the primary or secondary source of their disability.

Mother was considered to be the biological mother and

custodian of the child.

Geographical group was defined as a group of people that

reside in a particular geographical area. Puerto Rican

mothers residing in Puerto Rico represented a geographical

group different from those Puerto Rican mothers residing in

Florida. These two groups represented the two major

geographical groups in the sample.

Family subsystem was identified as a system smaller than

the family system. For example, parents and siblings each

constituted a subsystem within the family. Other examples of

subsystem may include a parent-child or a parent and another

family member (Whitchurch & Constantine, 1993).

Family suprasvstem was considered as a system larger

than the family system that interlocks with the family system

and other suprasystems. Examples of these may include the

church, extended families, social groups, and organizations

(Whitchurch & Constantine, 1993).

Culture was defined as a system of shared knowledge and

beliefs that shapes human perception and behavior. It

includes, among others, traditions, values, norms, language,

beliefs, and patterns of interactions.

Needs were identified as stimuli or conditions that

produce or call for change in the family system. They could

be viewed as a threat or challenge until a resource is

identified to meet the needs. In this investigation needs

and demands were used interchangeably. These were measured

with the Family Needs Scale.

Resources/sources of family support were considered as

physical, psychological, and social sources of assistance

available to the family for reducing or meeting its needs.

In this investigation, family resources were measured with

the Family Support Scale.

Intercultural differences were described as differences

resulting from the comparison of two distinct cultures.

Examples of intercultural studies are those reporting on

differences between Hispanics and European-Americans.

Intracultural differences were identified as differences

resulting from the comparison of two cultural groups who

share a common ethnic background. Examples of intracultural

studies are those reporting on differences between Mexicans

and Puerto Ricans, groups that share a Hispanic background.

Puerto Ricans represented those who were born in Puerto

Rico or who identified themselves as such for having been

brought up under the Puerto Rican culture as a second



A review of the relevant research and related literature

is presented in Chapter Two. The theoretical framework for

this investigation is also included in the second chapter.

Chapter Three includes the null hypotheses and a description

of the sample, instruments, methodology, procedures, and

analyses of data used in the study. Results of the study are

presented in Chapter Four. Discussion of the results and

their implications constitute the fifth and final chapter.


Introduction of Related Literature

The purpose of this chapter is to review literature

relevant to a study of Puerto Rican families of young

children with disabilities. First, family systems theory is

presented as the theoretical and conceptual foundation for

the study. Second, I review the literature pertaining to

parents of children with disabilities. The review focused on

two discrete but interrelated areas: family needs and family

resources. Third, the changing demographics of families in

the United States are reported, with particular attention to

the population growth and characteristics of Hispanic

families. Fourth, the review highlights family needs and

resources of Hispanic families of young children with

disabilities. Finally, I review research methodologies

suitable for research with culturally diverse Hispanic


Criteria for the Selection of Literature

Literature was reviewed according to the following

criteria. All searches were limited to papers and

publications written in English and printed from 1985 to the

present in United States periodicals. Searches focusing on

family needs, family resources, and Hispanic families were

restricted to empirical studies of families of children with

disabilities. These criteria were established to assist in

selection of literature that best reflected the nature of

today's American families and the Hispanic families addressed

in this study. Literature searches focusing on family system

theory included descriptive papers. Literature focusing on

the changing character of the United States population

included descriptive data on statistical trends in

demographics, particularly in the Hispanic population.

Information was obtained through searches in LUIS, ERIC,

Sociology Files, and Dissertation Abstracts International at

the University of Florida and through professionals in the

field. Professional literature was included if considered a

valuable contribution towards understanding the needs and

resources of Puerto Rican parents of young children with


Theoretical and Conceptual Foundation

Family systems theory is the foundation of the

family-centered approach that characterizes current early

intervention practices. This theoretical framework

encompasses the interdependence and mutual influence of all

elements in family systems and their sociocultural

environment. Family systems theory also addresses the

importance and impact of racial, ethnic, cultural, and

environmental factors on family systems. Its comprehensive

view of families serves as an appropriate theoretical and

conceptual framework for studying Puerto Rican families of

young children with disabilities.

Family Systems Theory

Contemporary systems theory about families has its

foundation in General System Theory (GST) (von Bertalanffy,

1968). This general theoretical framework is commonly

referred to as a program of theory construction that focuses

on the interrelationship of elements in the world (Whitchurch

& Constantine, 1993). The GST and its holistic approach had

a great impact on the evolution of the social sciences.

General System Theory has made its way into sociology

and family social science. Family sociologists and

psychiatrists began thinking of families as systems, shifting

the primary focus from the individual family member to the

family as a whole. This systemic approach depicted the major

assumption of the General System Theory: A system must be

perceived as a whole and cannot be understood by examining

its individual parts in isolation (Infante, Rancer, & Womack,


Embracing GST, theorists began to define families as

systems. This definition led to the emergence of family

systems theory. The new family theory embraced the analysis

of intrafamily processes such as family functioning,

transactional patterns, changes in family structure, and

family adaptation to change. Advocates of family systems

theory acknowledged the wholeness of the family unit, yet

recognized the interrelation of systems at other system

levels related to the family unit (Turnbull & Turnbull,

1990). Systems smaller than the family unit were called

subsystems. These subsystems included marital subsystems,

sibling subsystems, and parent-child subsystems. Family

subsystems are illustrated in Figure 2-1.

Marital Subsystem

Parentt Paent

Sibling Subsystem

Figure 2-1. Family subsystems.

Systems larger than the family system were called

suprasystems. Information derived from the studies of family

suprasystems was used to explore the relationship of the

family unit with its extended family, community, cultural and

ethnic groups, and geographical region.

Family systems, subsystems, and suprasystems are closely

related through the interactions of their members. Changes

occurring at any level of the system will have an effect on

every other level of the system as a result of mutual

influence. With such reciprocity, defining a system requires

determining the boundaries of each system. These boundaries

are characterized by their permeability, allowing the flow of

transactions in and out of each level. Permeability is

determined by the level of internal cohesion of the family

and the emotional connectedness among family members and

other systems. The boundaries and interactions between the

distinct system levels are illustrated in Figure 2-2.

Marital Subsystem


Sibling Subsystem

Extended Family

Community Suprasystem Boundaries


Figure 2-2. The boundaries and interactions between
system levels.

The family's ability to communicate within and between

each of its system levels facilitates the achievement of the

family's functional state even when threatened by external or

internal problems. Some family systems are closed with

little or no permeability between systems. These closed

systems are resistant to change and work to maintain their

original transactional patterns. Conversely, other family

systems are more relaxed and allow permeability between the

systems (Massey, 1986).

Families characterized by open boundaries tend to

communicate better at all levels of the system. This open

communication facilitates the restoration or maintenance of

the family's balance. Families resistant to change may

suffer from a lack of adjustment or adaptation to internal

and external demands. To ensure that the entire system

survives, families face the challenge of balancing the degree

of resistance to change with their drive to change or modify.

Communication within and between the family's subsystems,

suprasystems, and the environment helps to restore balance in

the family as it responds to its demands and resources.

Families are complex human systems that exhibit dynamic

behavior. To study family phenomena, it is necessary to look

at families as they respond to change. Families, like other

systems, respond to any source of disturbance to their state

of balance (Patterson, 1988). For example, the presence of a

disability in one of the children could increase the family's

financial needs and time constraints. Such demands could

alter family roles and require changes in family structure to

pull the family back into its former functional state. This

phenomena is illustrated in Figure 2-3.

Family Resources

Piled up family needs.

Family structure and balance can be challenged by

internal or external forces. Cultural and language barriers

resulting from migration could add to the already existing

family demands. The burden resulting from the family needs

prompts the family system to act to either protect or restore

its balance. Family resources and sources of support assist

families in their endeavor to balance their needs. Family

balance is illustrated in Figure 2-4.

Family Needs

Figure 2-3.

Family Resources Family Needs

Family Differences
___________ ____________________ Disability



FiQure 2-4. Family balance.

Family Needs and Resources

In the endeavor to reach or maintain a state of balance,

the family must address its needs and its resources to which

it assigns particular meanings. These meanings define the

family's perception of its reality. As a result, perceived

family needs and resources will ultimately determine the way

the family responds to adversity. An accurate perception of

reality is essential to families in the quest for balance.

Patterson (1988) defined family needs as the stimuli or

conditions that produce a call for change in the family

system. Needs can be identified from any of the family's

system levels (e.g., subsystems, suprasystem). Even a given

family system could become the source of the family's needs.

Characteristics of system members such as age, level of

education, extent of a disability, or marital status could

also represent family needs. Researchers studying families

of children with disabilities have described family needs as

those related to demands for information, family and social

support, financial assistance, child care, professional

support, and community services (Bailey & Simeonsson, 1988).

Although families tend to focus on their needs, family

resources are also crucial to attain the targeted balance.

Family resources are best described as the capabilities and

sources of support available to the family that will enable

the family to meet its needs. Resources are found at all

levels of the family system: individuals, subsystems,

suprasystems, and sociocultural environment. For example,

family support, an important family resource, could be found

in formal and informal kinships, social organizations, and

professional services enhancing families' capabilities to

respond to demands. Factors such as age, level of education,

and marital status of family members could also constitute a

family resource at a given time. How families of children

with disabilities identify and use their resources to respond

to their demands is the topic of the next section.

Families of Children with Disabilities

Steps taken to promote a family-centered approach in

early intervention practices have changed dramatically the

national policy on behalf of families of children with

disabilities. The enactment of PL 99-457, the Education of

the Handicapped Act Amendments of 1986, was a landmark step

forward (Guralnick, 1989). PL 99-457 delineated significant

goals and objectives to enhance the development of young

children with disabilities and their families. Dokecki and

Heflinger (1989) described how Part H of PL 99-457 reflects

implicitly a theory of social ecology where family

strengthening is critical to obtain positive developmental

outcomes for young children with disabilities.

The family-focused approach has enhanced the important

role of parents in their child's development. Parents are no

longer seen as bystanders but as critical elements of the

child's development. Parents' active participation in the

decision-making process ensures the protection of the

children's rights (Ziegler, 1989).

Early intervention practices have not only promoted

parental participation but also fostered a strong family

appreciation. The family-focused approach addresses the

child's development within the family and sociocultural

context. Such an approach represents a challenge to service

providers as they address the multifaceted family ecology

inherent in the nation's diverse ethnic configuration (De

Gangi, Wietlisbach, Poisson, & Stein, 1994; Winton & Bailey,


Although every family is unique, the presence of a

disability in the family has an impact on family life and

family functioning. In the last decade researchers have

focused on family needs and resources as a way of examining

this impact (Bailey, Blasco, & Simeonsson, 1992; Bailey &

Simeonsson, 1988; Cooper & Allred, 1992). Research findings

suggested that, although adequate early intervention services

are critical in enhancing the child's growth and

development, family involvement is directly related to the

ultimate success of the intervention (Ramey, Bryant, Wasik,

Sparling, Fendt, & LaVange, 1992).

The influence of the family system on the results of

early intervention practices prompted a movement toward a

multidimensional family assessment during the last decade.

Bailey (1995) described family assessment as the process of

determining family priorities for goals and services that

will ultimately enhance the provision of appropriate family

services. However, family assessment does not represent a

tool for identifying pathology in the families nor for

comparing families to a hypothetical family "norm."

Information regarding family needs and resources

enhances service providers' understanding of the issues and

processes undergone by parents who are raising a young child

with disabilities. Families' priorities, concerns, beliefs,

demands, and sources of support provide invaluable sources of

information to early interventionists. Research in this

field has enhanced the understanding of families.

The following sections present research findings on

family needs and resources. Data were derived from

interviews and self-report inventories. Results were grouped

in two categories: perceived family needs and perceived

family resources. Some of the studies reviewed addressed

both categories; pertinent results were reported under the

appropriate section. Population samples of the studies

included in two or more categories were described only in

their initial review.

Family Needs

Bailey and Simeonsson (1988) surveyed 34 two-parent

families participating in home-based infant intervention

programs. Researchers reported an average age of 14 months

for the participating infants. Children also varied in their

diagnoses. Approximately 85% of the children were Caucasian.

Male and female representation was 48% and 52%. Forty-seven

percent of the families participating were ascribed to a low

socioeconomic stratum.

In this study, the researchers had three objectives.

First, they identified the pattern of needs expressed by

mothers and fathers of young children with disabilities.

Second, they compared the needs expressed by mothers to those

expressed by fathers. Third, they developed an instrument

for the direct assessment of family demands. This review

focused on reports on family needs.

Reports indicated that the majority of the needs

expressed by parents belonged to the information domain.

Parents requested information about how to teach their

children, their children's disabling condition, services that

were currently available, and services that would be

available in the future. The second most frequently

expressed need belonged to the support domain. Parents

wanted more reading material about other parents of children

with disabilities, opportunities to meet other parents, and

more time for themselves. Other expressed needs included

help in paying for basic expenses and respite care for their

children so that parents could spend time alone with their

spouses. Parents also reported feeling fatigue as well as

guilt because their work took them away from their children.

Stress associated with their in-laws and other extended

family members was another difficulty reported by parents.

Some parents also experienced concerns about their children's

upcoming surgery. The most common general concern expressed

by parents was a concern about their child's future

development. In general, mothers indicated greater needs

than fathers and were more likely to express the need for

help in discussing family problems, reaching solutions, and

supporting each other during difficult times. This study not

only provided for the development of a family assessment

tool, but it also enhanced the understanding of families and

their needs.

Building on family research, McLinden (1990) examined

the impact of a young child with special needs on the way

parents viewed various aspects of their daily lives.

Emphasis was placed on determining the extent to which

parents perceived these aspects or situations of their lives

as problematic. The Comprehensive Evaluation of Family

Functioning (CEFF) Scale (McLinden, 1988) was used in this

study as part of a battery of assessments.

The research sample consisted of 48 mothers and 35

fathers. Children represented in the sample included 27 boys

and 21 girls, ages 26 to 50 months (M = 37.25 months), who

had developmental disabilities. The majority of the families

were Caucasian two-parent households with an income of

$30,000 or more. Families reported an average of two

children. In addition to assessing family needs, mothers and

fathers completed questionnaires that measured family

support, adaptability and cohesion, and functioning.

McLinden reported that mothers expressed twice as many

problems as fathers. This finding concurred with those

reported by other researchers (Bailey et al., 1992; Bailey &

Simeonsson, 1988; Cooper & Allred, 1992). Mothers' problems

were specified as time limitations resulting from caring for

their children's special needs, difficulty accepting their

children, a diminished sense of personal well-being, and

limited social relationships. Fathers also reported problems

with time demands and acceptance as well as a major concern

for their children's future. Time limitations expressed by

parents depicted the disproportionate allotment of their time

to their children and the lack of time for themselves or the

rest of their family. Fathers indicated that building the

family schedule around the special needs of their children

was problematic. Fathers had an additional concern for the

amount of progress their children made.

Bailey et al. (1992) extended the research on family

needs. They focused on parental adaptation to children with

disabilities. Their study consisted of a comparative

analysis of the needs for services expressed by mothers and

fathers. The study involved 261 mothers and 127 fathers and

24 significant others (e.g., foster parents, grandparents,

relatives) from 11 different states in the United States.

Four data sets were combined for this analysis: (a) a sample

of 78 families enrolled in home-based infant intervention

programs, (b) a sample of 20 parents whose children were

enrolled in a university-based mainstreamed program for

infants and preschoolers, (c) a sample of 139 parents served

by an Early Intervention program, and (d) a sample of 185

families from a variety of Early Intervention programs.

Participants represented families of diverse structure,

geographic locations, socioeconomic status, and race.

Children's ages ranged from 3 months to 14 years with an

average age of 26.8 months. Children's diagnoses varied

across a broad spectrum of disabilities. A total sample of

422 families completed surveys measuring family needs related

to six domains: information, support, explaining to others,

community services, finances, and functioning.

Results confirmed prior findings (Bailey & Simeonsson,

1988). The need for information was once more the most

frequently cited by parents. Parents needed more information

about the present as well as future services for their child.

Parents also perceived a need for information regarding their

child's condition or disability and how to teach their child.

At least 30% of the parents expressed a need for help with

information and handling their children's behavior, growth,

and development.

Results also were consistent with previous findings on

parents expressed need for support (Bailey & Simeonsson,

1988). Parental needs in this domain included (a) meeting

other parents of children with disabilities, (b) reading

material about families of children like theirs, (c) finding

more time for themselves, and (d) paying for basic expenses.

The difference noted between the expressed needs of mothers

and fathers in the 1988 study was also confirmed in this

follow up study. Overall, mothers expressed significantly

more needs than fathers and were more likely to express their


In a study analogous to that of Bailey et al. (1992),

Cooper and Allred (1992) explored the perceived needs of

mothers and fathers of children with disabilities.

Participants were 110 mothers and 61 fathers of children ages

birth to 36 months who were receiving early intervention

service. The majority of the parents (87%) were Caucasian,

and 62% were in the lower two socioeconomic strata. The

infants represented in the study manifested a variety of

handicapping conditions; 42% were diagnosed as having mild

disabilities, 34% moderate, and 24% severe. Most children

(76%) lived in a two-parent household. Parents were asked to

complete the Family Needs Survey (Bailey & Simeonsson, 1988)

independently and return it to their early intervention

programs to be forwarded to the investigators.

As in the previously described studies, the need for

information about their children's future services was the

item on which more parents expressed a definite need for

help. The next two items with high rates were information

about how to teach their child and information about current

services. There was a match between these top three needs

identified by mothers and fathers. Mothers (75%) also

expressed their need for social interactions, time for

themselves, and reading materials about other parents of

children similar to theirs. Fathers expressed their needs to

learn about their child's growth and development, and their

child's disability. Once more research findings indicated

that, overall, mothers expressed significantly more needs for

help on more items. Implications of this study included the

need for an open communication with parents, the importance

of transition planning, and parental need for "first-hand


Summary of Needs Perceived by Families of Children
with Disabilities

Studies reviewed reported on the needs perceived by

parents of children with disabilities. Needs were defined by

parents as demands, problems, sources of stress, information-

seeking interests, attitudes, time demands and constraints,

family financial limitations, problems identifying and

accessing services, dissatisfaction with professional

intervention, and concerns regarding planning for future

services. Information on perceived parental needs was

collected through interviews, self-report inventories,

scales, surveys, and participant completion of


The reviewed studies used a predominantly Caucasian

research sample. Participating parents were generally

mothers of children with disabilities, married, and within

the low-middle socioeconomic stratum. Children of

participating parents varied in age, diagnoses, and extent of

disability. Children's age ranged from birth to 14 years.

Diagnoses included visual impairments, mental retardation,

speech or hearing impairment, developmental delay, and health


Results concerning the needs expressed by parents of

children with disabilities indicated two primary needs:

information and support. The perceived need for information

was specified by parents as information regarding (a) the

current and future services available for their child, (b)

how to teach their child, (c) their child's disability, and

(d) how to manage the child's behavior. Parental need for

support included (a) reading materials on other parents of

children with disabilities, (b) time for themselves or to

spend with other members of the family, (c) opportunities to

meet other parents of children with disabilities, and (d)

assistance to pay expenses related to raising a child with

disabilities. Overall mothers and fathers expressed similar

needs, although mothers reported more needs than fathers.

Mothers prevailed as rich and open sources of information

about family needs. The increasing number of one-parent

households and the limited representation of single mothers

of children with disabilities in the reviewed samples attests

to the need for studies addressing this particular


Researchers described their predominantly Caucasian

populations as consisting of married parents from the

low-middle socioeconomic stratum. It could be expected that

the Caucasian families from two-parent households that

typified the research samples described previously may have

better sources of support than minority families or single

parents. Although research findings indicated the similarity

of parental needs across researched populations, it is

inappropriate to generalize such findings to culturally

diverse and nontraditional families. Results of these

research studies should trigger further investigation of the

needs experienced by parents of diverse sociocultural

backgrounds who are raising young children with disabilities

and the mediating factors that affect their needs. It is

important to consider the needs expressed by culturally

diverse families as these may differ in degree and nature of

their family needs. The family's cultural background and the

family's migration to the mainland may have an impact on

their perceived needs.

Family Resources

In the quest for understanding families of children with

disabilities, researchers not only have examined family needs

but also have looked closely at family resources. The

following section reviews investigations concerning family

resources. Reviewed studies are relevant to the

understanding of the resources perceived by parents of

children with disabilities. Studies are described and their

findings reported.

Dunst and Trivette (1989) described the complex

relationship between family needs, social support, and

self-efficacy in a group of parents whose children with

disabilities were in a transition phase from early

intervention to preschool programs. It was expected that

parents undergoing a transitional stage would experience a

change in self-efficacy influenced by the degree of social

support available to the families.

Fifty parents of children with disabilities were

recruited from a model demonstration project designed to

promote family participation in educational decision-making

(Dunst & Trivette, 1989). Parental age averaged 32.80 for

mothers and 37.21 for fathers. The children were on the

average 6.14 years of age and were diagnosed as

developmentally delayed with an average Developmental

Quotient score of 53.30 (SD = 31.89). Parents were

predominantly from a low to middle socioeconomic stratum with

a mean monthly income of $1,072.

Participants were interviewed and asked to complete the

Family Needs Scale (FNS) (Dunst, Cooper, Weeldreyer, Synder,

& Chase, 1987) and to list all their personal social networks

in regard to the education of their child with disabilities.

The sum of the number of people identified by parents as

providing them with support was used as the index of social

support. Researchers reported that social support was

inversely related to the expressed parental need for

transition-related assistance. There were no significant

effects of transition phases (e.g., from an early

intervention/preschool programs to school placements) on

parental needs, which indicated that support was available to

participants at the different levels of needs and at the

different times of transition. Such availability of support

promoted the flow of resources necessary to meet family


To expand the research on family social support, Dunst,

Trivette, Hamby, and Pollock (1990) conducted an

investigation with 47 mothers of preschool children with

disabilities. The study was designed to explore the

relationship between social support, personal well-being,

family well-being, and child behavioral characteristics

(i.e., cognitive style, social responsiveness, temperament).

Participants were predominantly from lower to middle

socioeconomic stratum with an average age of 29.21 years.

The sample was comprised of 74% married mothers and 26%

single, divorced, or separated mothers. The children were

assessed with the Bayley Scales of Infant Development.

Researchers reported an average age of 28.38 months (SD =

12.90 months) with a mean mental age of 14.78 months (SD =

10.10 months), and a mean developmental quotient of 59.29 (SD

= 28.43). All children were receiving home-based, early

intervention services from a transdisciplinary intervention

staff member.

Research findings examined the amount of variance in the

child's behavioral characteristics (i.e., cognitive style,

social responsiveness, temperament) as these correlated with

social support, personal well-being, and family well-being.

Overall the two well-being measures and, to a lesser degree,

social support proved to be the most important correlates of

the child's behavioral characteristics. Results also

confirmed the ties between parent and family affective

behaviors and positive child affective responsiveness. This

study provided evidence on the positive effect of social

support on family well-being and the interdependency of this

family sense of being with the amount of developmental

progress made by the child.

Building on their previous research on families,

Trivette and Dunst (1992) examined the characteristics and

mediational influences of role division and social support

among 88 mothers of children with disabilities. The sample

was selected from a group of mothers participating in an

early intervention program. The mean age for the sample was

28.61 (SD = 7.57) years. Participating mothers fell within

the three lowest socioeconomic levels. Seventy mothers were

married, and 18 were single, separated, divorced, or widowed.

Only 28 of the participants were working.

The children's mean age was 35.98 months (SD = 13.12),

and their mean mental age was 23 months (SD = 12.66).

Twenty-seven children had diagnoses of mental retardation, 34

physical impairments, and 27 developmental delays or at-risk

of developmental problems.

Mothers were asked to complete four questionnaires

including the Family Support Scale (Dunst, Jenkins, &

Trivette, 1984). Married mothers reported more informal

support from spouse, spouse's parents, and spouse's

relatives, whereas nonmarried mothers expressed more support

from social agencies. Results demonstrated that social

support differed as a function of marital status but not of

employment status. It was also evidenced that intrafamily

and extrafamily support had mediational influences on parent

and family functioning. Conversely, neither role

characteristics nor social support varied as a function of

child age or developmental status. Findings indicated that

mothers' roles differed as a function of maternal, marital,

and employment status, while role satisfaction did not differ

as a function of either marital or employment status.

Results of this study suggest that intrafamily role

sharing and extrafamily support available to mothers of

children with disabilities represent a critical resource for

meeting the demands resulting from their marital and

employment status. These findings demonstrated the need to

strengthen family informal and formal networks of support.

In the McLinden (1990) study previously described,

family resources were measured through the Family Support

Scale (FSS) (Dunst, Jenkins, & Trivette, 1984). This 18-item

self-report measure was designed to assess the availability

and helpfulness of sources of support in families of young

children with disabilities. Information on specific sources

of support identified by parents was not available because

researchers reported only on the total score of the FSS

scale. Results failed to show any statistically significant

difference between the availability and helpfulness of

sources of support perceived by mothers and fathers.

Parents also expressed similar perceptions of their current

family functioning and their concept of the ideal family


Family functioning has also been the focus of family

research. Paez (1992), for example, examined the functioning

of families of children with mental disabilities.

Participants represented 171 families with diverse ethnic

backgrounds. Sixty-one percent of the sample were Caucasian;

29% were African-American; and 10% were Hispanic. Mothers

constituted 88% of the sample. The mean age of the children

in the cohort was 9.11 years, and a majority (58%) was boys.

The degree of the disability in the sample varied from

educable mentally disabled to severe/profound mentally

disabled. Families' perceived internal resources and coping

strategies were measured through a 4-page questionnaire.

Paez (1992) noted a significant relationship between

families' internal resources (e.g., self-esteem, sense of

competence, sense of financial well-being), children's ages,

parental age, and ethnicity. Internal resources were found

to be a mediating factor between family stressors and family

adaptation by providing families with a sense of competence.

More internal resources were reported by families with better

financial resources. Although children's gender and severity

of disability were not significantly related to the reported

internal resources of families, families of younger children

indicated more coping strategies, greater optimism, and the

availability of better and more services for their young

child. Older parents identified more internal resources.

Ethnicity was reported as significantly related to family

adaptation. Hispanics families indicated lower intrafamily

resources than either Caucasian or African-American families.

These findings suggest that family-perceived resources may

differ among culturally diverse families.

In another intracultural study, Hanline and Daley (1992)

studied the relationship between maternal perceptions of

family coping strategies and family strengths in Hispanic,

African-American, and Caucasian families of young children

with and without disabilities. Two hundred six mothers of

children 36 months of age or less were recruited from 11

early intervention and child-care programs in Florida and

California. Fifty-nine participants (29%) were Hispanics; 66

(32%) were African-American; and 81 (39%) were Caucasian.

Approximately 60% to 70% of the participating mothers in each

ethnic group were mothers of children with disabilities.

Disabilities included neurological impairments, genetic

anomalies, sensory impairments, physical disabilities, and

developmental delay of varying degrees.

Participants completed the Family Crisis Oriented

Personal Evaluation Scales (F-COPES) and the Family Strengths

questionnaires. These measures provided information on how

families used external and internal resources; families,

perception of respect, trust, and loyalty within the family;

and families' sense of mastery or competence. Research

findings indicated that different ethnic groups tended to

have their particular way of coping with life's challenges.

Hispanics seemed to have well-developed coping resources

(e.g., family pride and a sense of competence) that buffered

the potential negative effects of the presence of a

disability in the family. No differences were found in

family coping strategies and family strengths between

Hispanic families of children with and without disabilities.

Conversely, differences were found in the use of social

support among African-American families of children with and

without disabilities. Multiple differences were identified

among Caucasian families of children with and without

disabilities. Overall, within-culture analysis revealed that

the use of family coping strategies was more predictive of

family strengths than was the use of social supports outside

the family. This study provides empirical data from which

professionals can better understand the coping strategies of

families, particularly of those of a nondominant ethnic


In a similar study of family coping and family strength,

Trute and Hauch (1988) examined families of children with

disabilities that had adapted well to the child's birth,

condition, and development. Participants were identified

from a child development center that assesses approximately

200 families a year and serves a particular province in

Canada. This study has been included in this review because

it provides valuable information about family functioning

regardless of the specificity of its sample. A pool of

parents was selected independently by professionals based on

parent's satisfactory adjustment to the child's disability

and to the children's adequate functioning given their

disability. A total of 37 families was interviewed.

The cohort of children included in the sample had a mean

age of 3 years and varied in their diagnosis and the degree

of severity of their disability. Twenty percent of the

children were identified as severely disabled, while 44% had

multiple handicaps. To collect data from the children, the

Colorado Childhood Temperament Inventory (CCTI) was used.

Ninety-seven percent of the parents were married. The mean

parental age for mothers was 32 years (SD = 7), while for

fathers, it was 35 years (SD = 8). Parents reported a range

of total family annual income that depicted representation

across the socioeconomic spectrum. Nevertheless, 31.4%

reported incomes ranging from $30,000 to $39,000.

Participating families scored significantly higher than

the norms on all subscales of the Family Assessment Measure

(FAM) (Skinner, Stinhauer, & Santa-Barbara, 1983). The

strength of these families was not directly affected by the

degree of disability of their children or whether the child

was the only child in the family. Families in the study

displayed significant higher cohesion as a marital team as

well as a high level of employment of social network

resources. Friends and family each played a major and

distinct role in providing family support and network

assistance. Friends were seen as providing the major source

of social activity, while family members were more likely to

be pulled into the family's ongoing resource network.

These findings highlighted the prime importance of

family and network assessment as a way of planning

appropriate intervention that will meet the needs of families

of children with disabilities. It is important that

professionals attend to spousal relationships, social network

functioning, and coping techniques when assisting families

with their children's disability. When linked together,

informal and formal networks of support and personal coping

skills could become a powerful set of tools in family

adjustment. Parents may benefit from counseling on how to

identify, mobilize, access, and utilize their resources in

order to maintain the healthy social network system that

characterizes successful family functioning in situations

where there is a child with special needs.

Summary of Findings

Studies reviewed in this action reported on the

resources perceived by parents of children with disabilities.

Resources were considered as capabilities to balance or

countereffect the demands experienced by the family. In

these studies family resources were described as networks of

support, support systems, internal and external resources,

family strengths, coping abilities, and stress management.

Resources were measured through self-report questionnaires

and/or interviews with the parents.

The information gathered represented parents' perceived

resources and the meaning parents ascribed to these

resources. Family adjustment to the child's disability was

affected by adequate use of the resources while meeting

demands. As a result, parents' perceptions and the meanings

they ascribed to resources had an effect on family adjustment

and functioning.

Participating parents were in the majority Caucasian

with some representation of African-American and Hispanic

parents. Participants were predominantly from a low-middle

socioeconomic stratum. Married white females ranging from

their late 20s to early 30s characterized the samples.

Children's ages ranged from birth to 6 years. A variety of

diagnoses and degrees of severity were represented in the

sample. Research findings about the identification of

parental resources enhance researchers' understanding of

families' identification, accessibility, and use of


Research findings on the resources perceived by parents

of children with disabilities indicated two major trends.

First, marital status seemed to relate significantly to the

level of support perceived by parents of children with

disabilities. Married parents identified more resources than

single, divorced, or widowed parents. Nonetheless, the

majority of the samples were comprised of married parents

leaving an information gap on one-parent households to be

bridged by further research. Second, intrafamily (within the

family system and subsystem level) and extrafamily support

(at the family suprasystem level) had an impact on family

well-being and family coping with stress factors. Sources of

support identified by the families within their kinship or

from external resources such as social organizations, church,

and friends facilitated family coping and increased family


No consistent trend was established between family

resources, ethnicity, children's characteristics, or parental

characteristics. Nevertheless, in one study Hispanic parents

represented in the samples were identified as having fewer

internal resources than parents from other ethnic groups.

Research on family resources is essential for the

development of interventions to enhance a family's

capabilities to satisfy the demands it experiences. However,

researchers have focused predominantly on married, Caucasian

females. Resources experienced by this sample could be

significantly different than those perceived by single,

Hispanic females. Future research should address the

resources available to culturally diverse families of

children with disabilities. Understanding of the family

resources of Hispanic families is critical to providing

services to this fast growing population. Information on

this matter will allow for the planning and implementation of

intervention programs responsive to the characteristics of

this diverse population

United States Chanaing Demoaraphics

Cultural diversity has gradually come to characterize

the nation's ethnic complexion. New demographic trends

reveal the dramatic growth of the culturally and

linguistically diverse population. This trend is expected to

persist during the upcoming century as immigration patterns,

birth rates, and lower average age contribute to this

remarkable growth.

The marked increase in the culturally diverse population

reflects the phenomenal increase of Hispanics in the United

States. Data from the U.S. Bureau of the Census (1995)

indicate that Hispanics represent the fastest growing and

largest minority group in the nation. Chapa and Valencia

(1993) reported a 53% annual growth rate of Hispanics, a rate

that exceeds the total American population growth


The three major cultural subgroups of Hispanics in the

United States are Mexicans (60.4%), Puerto Ricans (12.2%),

and Cubans (4.7%). The remaining 22.8% is an aggregation of

several distinct national origin subgroups mainly from

Central and South America and the Caribbean. Unlike the

other major cultural subgroups, Puerto Ricans are United

States citizens and can travel back and forth to their native

country. After the large migration of the 1950s and 1960s,

Puerto Ricans have typically settled in cities of the east

coast (e.g., New York, Pennsylvania, Connecticut,

Massachusetts). Even after a long migration history, many

Puerto Ricans have not succeeded economically in the United

States and are very disadvantaged when compared with other

Latino groups (Ortiz, 1986, as cited in Ortiz, 1995).

Although Hispanic groups are concentrated in different

regions of the country, there is a high concentration in

Florida. Demographic reports indicate that Florida has the

fourth largest representation of Hispanics in the nation

(Chapa & Valencia, 1993).

Profile of Hispanic Families

The mean income of Hispanic households reported in the

income distribution data of the United States Department of

Commerce, Bureau of the Census (1995) is $24,530 (U.S. Bureau

of the Census, 1995). This income is $12,954 less than the

mean income of all households in the United States and

$15,311 less than the mean income of white families. Another

factor that exacerbates the economic disadvantages

experienced by the Hispanic population is their higher

proportion of single-parent families when compared with

non-Hispanic white families. Seventy percent of Hispanic

children live with both parents, 23% with a female head, and

7% in male-headed households.

Williams (1992) described how this culturally diverse

group is at risk due to its levels of poverty, unemployment,

broken family structures, and high dropout rates. The

possibility of growth of the at-risk children population

increases as the number of culturally diverse students living

in poverty and under inappropriate environments increases as

well (Pallas, Natriello, & McDill, 1989). The presence of a

disability in one family member represents a demand on the

family system. The chain reaction of transactions within and

between the different levels of the system will vary greatly

among families and among cultures. For example, Puerto Rican

families report a strong feeling of obligation and service to

members of the extended family perceived to be in distress

(Garcia-Preto, 1982). The informal network of support

available to these families becomes their primary source of

support in the struggle for balance. Puerto Rican families

build a strong extended network of personal relationships, or

"familism," that prevails over any support available from

social agencies or formal institutions (Hurtado, 1995).

Puerto Rican families who migrate to the United States

and who have children with disabilities may no longer have

the extended family support previously available to them in

their native country. These families may also face the

demands presented by the new, contrasting cultural

environment in which independent and individualistic behavior

is valued. Migration also has a major impact on family

systems. Migration could alter family demands, resources,

and the way the families respond to them. Heller, Markwardt,

Rowitz, and Farber (1994) in their study of Hispanic and non-

Hispanic families of children with mental retardation

compared families' demographic characteristics, religious

values, and support resources across groups. These

researchers revealed how migration and the "transition from

cultural alienation to cultural integration has resulted in

different patterns of family interactions for many Hispanics"

(p. 291). Researchers have also reported on the impact

cross-cultural stressors resulting from migration have on

maternal rejection of a child with disabilities (Siantz de

Leon, 1990) and on the influence of informal support systems

on family well-being (Orr, Cameron, & Day, 1991).

The way Puerto Rican families in the United States

perceive their resources and demands may determine their

success in achieving the desired balance in a new

sociocultural environment. Permeability among the family

systems of Puerto Rican families in the United States may be

altered by language barriers, mistrust, and cultural

mismatch. Understanding Puerto Rican families within their

sociocultural context is even more important because of their

migration patterns. Puerto Rican migration has been

described as transient in its character resulting from their

shared citizenship and proximity to the United States.

Because no special documents are necessary to travel,

migration from the island to the mainland is characterized by

a back and forth movement influencing Puerto Rican family

life. This migration pattern reinforces Puerto Ricans' close

family ties with their native country and their adherence to

their ethnicity and cultural heritage (Garcia-Preto, 1982).

This phenomenon also reflects a pattern of repeated ruptures

and renewals of ties including the dismantling and

reconstruction of familial and community networks in both

geographical settings.

Puerto Rico, a commonwealth of the United States since

1952, is strongly influenced by federal government. Because

they have no vote in the United States elections, Puerto

Ricans continue to have very limited power over their fate,

yet they must comply with federal mandates and legislation.

Decisions regarding the development and implementation of

family intervention programs in the United States pertain to

Puerto Rico as well. Nevertheless, federal mandates rely on

research based on a Caucasian population with little or no

representation of Puerto Ricans in their samples.

Puerto Rican parents of young children with disabilities

face the island's lack of personnel and services to comply

with federal regulations regarding early intervention

practices. Migration then becomes an alternative for those

who decide to satisfy the physical and educational needs of

their children with disabilities. The absence of improved

economic status after migration establishes the need for a

close look at Puerto Rican family systems and their

interaction with the dominant American culture.

Information on how Puerto Rican families who migrate to

the United States compare to those in their native land is

necessary to help determine the changes families undergo as a

result of migration. The limited empirical knowledge about

Puerto Rican families of young children with disabilities and

the impact of migration place a demand on early

interventionists as they attempt to provide Puerto Rican

families with appropriate services. Research could enhance

the understanding of these families by differentiating

factors and characteristics attributed to their cultural

background and those resulting from the migration process.

To enhance family access to early intervention services,

particularly among the immigrant population, it is essential

that service providers respond to the unique demands

experienced by these families. Service demands presented by

this population and the dearth of information about them has

spurred a genuine research interest. The following section

describes and reviews studies of Hispanic parents of children

with disabilities.

Needs and Resources of Hispanic Families

In this section, I review research studies relevant to

the understanding of the needs and resources perceived by

Hispanic parents of children with disabilities. Preference

was given to research with representation of Puerto Rican

families. Studies were described and their findings


Bailey, Irrizary, Nieves-Mutoz, and Skinner (1994)

conducted a recent study with 400 Puerto Rican parents of

young children with disabilities residing in Puerto Rico

to investigate the nature and distribution of parental

needs. Information gained from Puerto Rican parents was

compared with the information obtained from previous studies

in the United States in which samples were mostly Caucasian


Participants were 369 mothers and 81 fathers, all native

Puerto Ricans. The children's mean age was 25.5 months;

their diagnoses varied with respect to disability. Parents

were asked to complete the Family Needs Survey (Bailey &

Simeonsson, 1988) independently as a part of a series of

workshops for parents of children with disabilities.

Results indicated that the need for information was the

most frequently cited area of need by parents. Information

was reported to be needed regarding current and future

services available for their child, their child's disability,

how children grow and develop, and how to teach their child.

These findings are similar to results reported on studies on

family needs previously described in this chapter.

Other expressed parental needs also coincided with those

previously reported by Bailey and Simeonsson (1988) and

Bailey, Blasco, and Simeonsson (1992). Parents perceived a

need for reading material about parents of children with

similar disabilities and opportunities to meet and talk with

other parents of children with disabilities. Unlike

previously reported research findings, however, Puerto Rican

mothers and fathers were highly similar in their expression

of needs. Nevertheless, the overall level of expressed needs

was significantly higher for both Puerto Rican mothers and

fathers than for U.S. samples (Bailey & Simeonsson, 1988;

Cooper & Allred, 1992).

Mary (1990) examined 60 mothers of young children with

disabilities to explore their feelings and reactions towards

their children. Participants were selected from a pool of

254 mothers who were clients at a Regional Center for

Developmentally Disabled Citizens. A stratified sampling

method was used to provide equal representation of African-

American, Hispanic, and Caucasian mothers. The majority of

the mothers were married and considered in the lowest

socioeconomic stratum. In addition, family income and

degree of severity of the child's disability were also

controlled. Mothers were interviewed in their native

language by bilingual researchers.

Results showed no significant patterns related to

ethnicity in response to the maternal reactions of love,

shock, grief, and guilt. However, a content analysis of

open-ended questions revealed that Hispanic mothers expressed

a sense of self-sacrifice not seen in any other ethnic group.

A denial on the part of husbands was also reported only by

Hispanic women, who expressed feelings of loneliness due in

part to the unwillingness of their husbands to recognize

their children's disabilities. These findings suggested that

Hispanic mothers may shoulder more of the emotional burden of

their children's disabilities than do Caucasian or

African-American married mothers of children with

disabilities. Hispanic and Caucasian mothers reported

underlying stages of reactions towards their children ranging

from strong negative feelings to later periods of adjustment.

The results of this study indicate the need for further

study on the effects of cultural norms on the adaptation of

parents of children with disabilities. Clinical and research

attention is necessary to identify the cultural factors that,

among others, inhibit or enhance family adjustment to their

children's disability. The implications of these factors on

service delivery to multiethnic populations is evident.

Heller, Markwardt, Rowitz, and Farber (1994) conducted a

comparative study of the adaptation of Hispanic and non-

Hispanic families to a member with mental retardation. The

study also looked at each group's family characteristics,

religious values, and sources of support. A sample of 51

Hispanic and 195 non-Hispanic white families participated in

the study from an original pool of 834 families. Of the

Hispanic sample, 34 were from Mexico, 15 from Puerto Rico,

and 1 each from Columbia and Peru. The age of the relative

with mental retardation ranged from .4 to 36 years. Surveys

and interviews were used by researchers. The degree of

severity of the children's disabilities varied from moderate

to profound across both ethnic groups.

Overall, the study did not report significant

differences on the caregiving burden perceived by Hispanics

versus non-Hispanic white families. Nevertheless, results

confirmed that Hispanics differed from non-Hispanics in their

religious orientation. Hispanic parents believed that taking

care of the family member with mental retardation was a

religious duty. Religious beliefs were seen as serving these

families as a way of adapting to their children's disability.

Regarding social support, these researchers were

surprised when no significant difference was found in the

degree of informal and formal support sought by Hispanic and

non-Hispanic families. Researchers explained that the

majority of the Hispanic families participating in the study

were Mexican immigrants who had little or no extended family

or friendship networks in the United States. The typical

reliance on family support reported in the literature

regarding Hispanic families seemed to have been altered by

the cultural and physical alienation that result from

migration. Heller et al. (1994) were unable to determine

whether immigrant status or ethnicity was in any way

affecting family adaptation in either of the two groups.

Harry (1992b) studied 12 low-income Puerto Rican

families whose children were diagnosed as having either

learning disabilities or mental retardation. The primary

goal of this study, part of a larger ethnographic study of

low-income Puerto Rican-American parents, was to examine the

role of culture in parents' interpretations of their child's

special education placement. The majority of the

participating families had little formal education and

received assistance from welfare programs. Only three

fathers participated in the study. Spanish was the language

used with the participants. Children in the sample varied in

their diagnoses and degree of disability. Data were

collected through structured and unstructured interviews and

participant observations, methods typical of the ethnographic


Harry found that parents ascribed a different culturally

based meaning of their children's disability and held their

own theories to explain them. For these Puerto Rican

parents, the parameters of normality were much wider than the

ones used in by the educational system. Parents also

experienced difficulties with the different labels and

designations for disabilities leading them to confusion with

more severe cases. Overall, the study showed that the power

of parents to participate in the educational system may be

seriously undermined by cultural differences. It also

demonstrated that parents, regardless of their formal

education, different language, and culture, have a

significant contribution to make to the educational system.

Summary of Findings

The growing number of Hispanic families of young

children with disabilities served in early intervention

programs provides a rationale for the increasing research

interest in this population. Studies reviewed in this

section represent an effort to explore the feelings and

perceptions towards their children's disabilities among

Hispanic and Puerto Rican parents in particular. Research

questions addressed the possible impact of cultural

differences on parental reactions and perceptions of their

child's disability, parental use and access to support

services, and professionals' perceptions of culturally

diverse families. Data were collected through interviews,

self-report questionnaires, and surveys.

Research samples were either exclusively Hispanic or

comprised representations of several ethnic groups including

Puerto Ricans. Participating parents were predominantly

married mothers of children with disabilities from a

low-middle socioeconomic stratum. A variety of diagnoses and

degrees of severity were represented in the samples of


An analysis of the findings across studies revealed a

lack of consensus about the impact of cultural differences on

parental perceptions. Some researchers (De Gangi et al.,

1994; Harry, 1992b) attributed differences in parental

perceptions of disabilities to ethnicity and cultural

background. Conversely, others (Heller et al., 1994; Mary,

1990) refuted the overall influence of culture on parental

perception. Nonetheless, these latter studies reported

differences in religious orientations and parental reactions

to children's disabilities; these differences were correlated

with parental ethnicity.

The lack of consistent findings regarding the effect of

ethnicity suggests the need for further studies focused on

this growing population. Efforts devoted to a better

understanding of Hispanic families will facilitate the

provision of family services and an appropriate education to

all Hispanic children with disabilities. Information on

cultural differences will allow for the planning and

implementation of intervention programs responsive to the

characteristics of this diverse population.

Review of Family Assessment Instrumentation
and Research Methodoloav

Educational research today requires a more comprehensive

perspective regarding research methodology (Sherman & Webb,

1990). Polarization of research traditions and perspectives

have led to unnecessary debates on principles and methods

among fields of study. Quantitative and qualitative research

methodology should be considered as complementary. This

perspective will expand the choices in methodological

inquiry. Family research has gradually shifted its focus on

individuals and has acknowledged the importance of studying

family phenomena in a natural context. The richness of the

information about the context provides researchers with a

better understanding of the phenomena and enhances the

transferability of the findings. In this section, I review

the major issues regarding instrumentation and methodology in

family research.

Family Research Instrumentation

The assessment of family needs, resources, and family

functioning traditionally had been the responsibility of

psychologists, social workers, and family therapists (Bailey,

& Simeonsson, 1988). The implementation of Public Law 99-457

with its multidisciplinary approach to family assessment

broadened the roles of professionals concerned with family

intervention. Early interventionists now play an active role

in family assessment and the development of Individualized

Family Service Plans (IFSP). Interventionists' new roles

represent a challenge as professionals search for appropriate

instruments and methodology to better understand families.

The demand for family assessment instruments to assist

in program planning and intervention increased as more

services became available to families. Although there are

numerous scales and instruments developed to assess families,

interventionists face several challenges when selecting and

using these assessment tools. First, there is a lack of

consistency in the terminology used to define and measure

outcomes. Second, there is a variety of theoretical

orientations and data collection methodologies. Third,

reviews and analyses of instruments are very limited,

providing little evidence about validity and reliability.

Fourth, family assessment instruments respond primarily to

the English speaking population, overlooking the growing

culturally diverse population.

The inconsistency exhibited by the terminology used in

family assessment instruments reflects to a great extent the

abstract and complex nature of family functioning issues

addressed by these instruments. To increase comparability

among studies, it is necessary that researchers specify the

definitions they used and describe thoroughly the outcomes to

be measured.

Although there are numerous scales and instruments

designed to assess families, there is a lack of family

assessment instruments for which substantial evidence of

psychometric properties has been provided (Bailey, 1989;

Dunst, Jenkins, & Trivette, 1984). This limitation is more

evident when assessing culturally and linguistically diverse

families. There is a dearth of validated instruments to

facilitate family assessment among the growing culturally

diverse population (Fracasso, 1994). Validation of family

assessment tools with culturally diverse families is critical

in the provision of appropriate early intervention services.

Family Research Methodolocav

Family assessment can be conducted following a variety

of research methods. Among the most common are case studies,

observations, interviews, and self reports; there is no one

best method for collecting data (de Gury & Dickinson, 1991).

The selection of the research methodology depends largely on

the research question and the theoretical foundation of the


Researchers have relied strongly on the use of

self-report instruments to assess families. Nevertheless,

interviews have gained popularity among family researchers

and interventionists. These researchers have described

interviews as useful in learning about parental perceptions

of events and priorities of services (Winton & Bailey, 1988).

Bauman and Adair (1992) noted that interviews provide

information regarding the scope, content, variety, and depth

of people's feelings regarding a given issue or phenomenon.

When interviews are used in conjunction with quantitative

methods, they provide insights about the relationships among

variables and factors that are significant to the study, but

not necessarily measured (Bauman & Adair, 1992).

Interviews have several additional advantages. First,

they provide the opportunity to engage in a conversation with

parents, ensuring parental understanding of the questions

even when parents have little or no literacy. Second,

conversation allows the development of excellent rapport with

parents. Third, interviews decrease the probabilities of

missing data. The personal nature of questions included in

family questionnaires could be considered intrusive when

presented in a self-report format, causing participants to

decline to provide the information in writing or in the

absence of a personal contact. Finally, the resourceful

nature of interview process enhances the validity of the data

collected by increasing the accuracy of the findings.

Unfortunately, interviews are not exempt from challenges

as research instruments. Interviews are vulnerable to social

desirability and other biases. Therefore, researchers

engaged in the interviewing process must look for strategies

and methods to increase the validity of their findings. For

instance, to ensure credibility, the researcher could extend

the length of the interview. When using an extended period

of time, it is more likely that rapport and trust will be

developed. This will enhance the probability of collecting

authentic and relevant information as the informant reacts to

different topics. Another way of increasing credibility is

to use triangulation of methods, sources, and investigators.

Cross-checking information could limit misinterpretations or

coding errors. Audiotapes represent a valuable method of

corroboration of information.

Strategies to enhance the properties of the research

methodology are particularly important when studying

populations that differ from the normative sample. The use

of participants' native language and a match between

interviewer's and interviewee's cultural backgrounds

facilitates the use of appropriate vocabulary and interaction

patterns. This match fosters the development of a warm

personal relationship based on trust ("confianza") and

intimacy or closeness ("personalismo"). Puerto Rican mothers

reported this kind of personal relationship as necessary

before they could openly express their feelings and provide

personal information to others (Harry, 1992a; McGoldrick,

Pearce, & Giordano, 1982). The language and cultural match

of the interviewer and interviewee is considered an asset by

researchers in the field (Wayman, Lynch, & Hanson, 1990).

The literature reviewed in this chapter provides a

theoretical and empirical foundation for the study of Puerto

Rican parents of children with disabilities. Federal and

state policies demand the provision of appropriate services

for all young children with disabilities and their families

under a strong family centered approach. The implementation

of these policies represents a challenge to professionals as

they face the rapid growth of the culturally diverse

population. Educators, family interventionists, and other

related service personnel must enhance parental involvement

and participation, overcoming cultural and language

differences. To enhance the efficacy of service programs, it

is necessary that service providers (a) comprehend the nature

and complexity of the family system, (b)understand the

interactive role of parental needs and resources, (c) adopt

culturally responsive interaction practices, and (d) assess

and respond to the family's unique needs and resources.

Empirical studies on family needs, family resources, and

Hispanic families of children with disabilities provided a

basis on which to build this investigation. Overall research

findings denote the importance of understanding family needs

and resources, their interactive nature, and the effect

parental and child characteristics (i.e., marital status,

socioeconomic status, ethnicity, level of education, and

degree of disability of the child) could have on family needs

and resources. Studies to determine the needs and resources

of Puerto Rican families of children with disabilities are

limited in their scope and generalizability.

This investigation expanded current knowledge in several

ways. First, it provided a formal statement of its

underlying theoretical foundation (Family Systems Theory)

addressing the dearth of theoretically based research on

diverse populations. Second, it broadened the traditional

intercultural focus by examining within group variability.

Third, it specified a targeted population avoiding broad

cultural categories that blur the richness and uniqueness of

distinct cultural groups. Fourth, the study addressed the

impact of migration on family needs and resources by

comparing the same population in two distinct geographical


The information derived from this investigation will

provide insight into the needs and resources of Puerto Rican

parents of children with disabilities. The study will also

contribute to the understanding of family differences in

needs and resources that may result from the migration

process. Furthermore, the results of this study will enable

service providers and early childhood education personnel to

develop and implement interaction patterns and services

sensitive to cultural differences. Knowledge gained about

the perceived needs and resources of Puerto Rican families of

children with disabilities residing in the United States and

Puerto Rico will enhance the understanding of family

priorities, facilitate family involvement, and promote the

appropriate education of young children with disabilities

among the rapidly growing Puerto Rican population in the

United States.



The purpose of this study was to investigate the needs

and resources of Puerto Rican mothers of young children with

disabilities residing in Puerto Rico and in Florida. I also

investigated the relationship between needs and resources

with other mediating variables extensively referenced in this

area of study (e.g., marital and socioeconomic status).

Research findings were examined in relation to the Family

Systems Theory and to the family structure of the Puerto

Rican families in the sample. The study used a subset of

data from a major study of Puerto Rican and Mexican families

of children with disabilities living in the United States

(Bailey, Correa, Skinner, & Arcia, 1994) and expanded the

study to Puerto Rican families residing in their native land.

This chapter begins with the statement of the research

hypotheses that guided the study. A description of the

mothers participating in the study is presented next,

followed by a general overview of issues regarding the

selection of family assessment instruments. This overview

leads to a description of the selected instruments, devoting

particular attention to data available on reliability and

validity. Finally, data collection procedures and the

treatment of the data are discussed.

Description of the Null Hypotheses

In this study five research hypotheses were tested.

They are stated below in operational null form.

H The needs perceived by Puerto Rican mothers of young

children with disabilities living in Puerto Rico are not

different from the needs perceived by Puerto Rican mothers of

young children with disabilities who reside in Florida.

Needs included information, family and social support,

financial needs, explaining your child's disability to

others, child care, professional support, and community


H The sources of support identified by Puerto Rican

mothers of young children with disabilities living in Puerto

Rico are not different from the resources reported by Puerto

Rican mothers of young children with disabilities who reside

in Florida. Resources or support systems accessed by mothers

included informal and formal kinship groups, social

organizations, spouse or partner support, and professional


H Mother's level of education, socioeconomic status,

mother's age, child's sex, child's age, marital status, and

extent of delay perceived in their child's development are

not related to the needs experienced by Puerto Rican mothers

of young children with disabilities residing in Puerto Rico

and Florida.

H Mother's level of education, socioeconomic status,

mother's age, child's sex, child's age, marital status, and

extent of delay perceived in their child's development are

not related to the sources of support available to by Puerto

Rican mothers of young children with disabilities residing in

Puerto Rico and Florida.

H5 The needs perceived by Puerto Rican mothers of young

children with disabilities in Puerto Rico and Florida are

unrelated to mothers' reported sources of support.

Family Assessment Instruments

There is a wide variety of instruments designed to

assess families that have proliferated after the

implementation of Public Law 99-457 and its demand for family

assessments to assist in program planning and intervention.

However, there are questions regarding the uniformity of the

terminology and methodology of family assessment instruments,

their psychometric properties, and their validity when used

with diverse populations.

Terms and methods have been clearly stated in this study

to reduce the inconsistencies in terminology and methodology

that characterizes family assessment instruments. The

theoretical framework serving as the foundation for this

study was also stated. These measures facilitate the

interpretation, analysis, and generalizability of the


Unique Properties of the Research

This study responded to the need for information

regarding families from a culturally diverse background. In

this study Puerto Rican mothers of children with disabilities

were asked about their perceived needs, resources, and the

extent of their child's disability. Although it could be

claimed that mothers were basically engaged in a self-report

methodology, the instruments were used during an interview


Interviews provided the opportunity to ensure parental

understanding of the questions, develop appropriate rapport,

and minimize missing data. The perfect match between the

interviewer's and interviewee's cultural background and

native language is considered an asset or strength of the

research. This match enhances the use of proper vocabulary

and interaction patterns.

Another strength of the methodology in the present study

is that it allows the researcher to create a sensitive and

personal atmosphere. In such a context, parents are more

likely to answer personal questions that could have been

considered intrusive if presented in a self-report format.

The resourceful nature of the research methodology enhanced

the validity of the data collected by ensuring an accurate

picture of the participant's needs and resources, which

probably could not have been accessed through any other



Participants for this study were Puerto Rican mothers of

young children, ages birth to 5 years, with disabilities.

Participants were residents of Puerto Rico or Florida and

were identified through their participation in early

intervention programs (e.g., School Board, Health and

Rehabilitative Services, Children's Medical Services,

Diagnostic Evaluation Intervention) or through their

membership in local churches, ethnic affiliations, or any

other parent support organizations. Participation was

voluntary, and mothers received a monetary contribution for

the time devoted to the interview.

In Florida, information was sent to all school districts

that had reported at least a 20% Hispanic population in their

Exceptional Student Education (ESE) programs. Contact was

also made with other related governmental agencies involved

in the provision of early intervention services. Over 50

religious institutions, ethnic affiliations, and parental

groups were contacted throughout the state. Contacts

included visits to school council meetings, physicians'

seminars, and outreach centers.

In Puerto Rico, information was sent to the central

office of the Department of Education and the Health

Department. The former is in charge of relaying information

to all school districts serving the age 3 to 5 early

childhood group, while the latter serves the birth to age 3

group. Parent support agencies, parental organizations, and

churches were also contacted.

Selection of Assessment Instruments

The selection of the instruments was complex due to

problems with the psychometric properties of family

assessment tools. Unfortunately, few family assessment

instruments with adequate reliability and validity data are

available. Effort was taken to use instruments with

demonstrated validity and reliability and with normative

samples that included participants similar to the potential

participants in this study.

The assessment instrument used in this study consisted

of a demographic form and three scales: (a) the Family Needs

Survey (Bailey & Simeonsson, 1988, 1990), (b) the Family

Support Scale (Dunst, Trivette, & Jenkins, 1988), and (c) the

ABILITIES Index (Simeonsson & Bailey, 1988). Copies of the

English and Spanish versions of the consent forms and the

assessment instruments are provided in Appendices A and B.

Instruments selected for the study had to comply with

preestablished criteria. First, evidence about their

reliability and validity had to be available. Second, they

must have been used in previously published studies of family

needs and resources.

Family Demographic Form

Research on families of young children with disabilities

has documented several mediating factors. For example,

studies indicate the relevance of mothers' socioeconomic

status on their expressed financial needs (Bailey, Blasco, &

Simeonsson, 1992). Researchers (Paez, 1992; Trute & Hauch,

1988) also reported on the possible impact of the varying

degrees of disability on family needs and resources. Marital

status has been identified as having a significant impact on

family demands and capabilities (Trivette & Dunst, 1992).

These and other research findings guided the selection of the

variables examined in the study.

Demographic variables selected as relevant to the study

were incorporated into the Family Demographic Form (Bailey,

Correa, Skinner, & Arcia, 1994). Information requested in

this form included mothers' age, marital and socioeconomic

status, place of birth, and time residing in that

geographical location. Information about the family's

socioeconomic level was determined by the family's level of

education (in a two-parent household the higher level of

education was used as the family indicator of level of

education) and their eligibility for government assistance.

The child's birth date, diagnosis, and current services

available were also collected. A brief description of the

family composition was also included. Demographic

information required the production of a short verbal

response that was written down by the researcher. A code for

each response was developed to assist in data analysis.

The Family Needs Survey

The Family Needs Survey (FNS), developed by Bailey and

Simeonsson in 1988 and revised 2 years later (Bailey, Blasco,

& Simeonsson, 1992), provides a valuable way of identifying

family needs pertaining to their child's disability. The

survey is based on a comprehensive review of the literature,

clinical experiences in working with families, and extensive

discussions of experts on the field. The authors employed a

principal components factor analysis to discern the factor

structure of the scale. Results yielded six factors or

domains described by Bailey and Simeonsson (1988) and a

seventh one resulting from the reorganization of items in a

revision of the instrument (Bailey, Blasco, & Simeonsson,

1992). The revised version used in the study assessed family

needs for information, explaining to others, child care,

finances, family and social support, professional support,

and community services. (See Appendix B for the revised

version of the FNS.)

The instrument consists of a 35-item scale and two open-

ended questions. The format of the items facilitates

parents' reflection of their specific needs and allows them

to make clear statements about those aspects of family

functioning in which they perceive a need for assistance.

Parents responded in one of three ways: 0 = I definitely do

not need help with this, 1 = not sure, and 2 = I definitely

need help with this.

The open-ended questions required parents to list any

other need that was not included on the survey and to

identify what they considered their two primary needs. Using

this instrument, Bailey and Simeonsson (1988) coded each

response as a restatement of a reported need, a clarification

of a need, or a new need not mentioned in the survey. In the

present study these coding procedures were replicated.

The survey was originally developed in 1988 and tested

with 34 two-parent families participating in home-based

infant intervention programs. Stability ratings were

obtained on a subsample (20 couples) after 6 months. Total

score correlations between first and second administrations

were .67 and .81 for mothers and fathers. Subscale

correlations ranged from a low of .53 to a high of .79.

Sexton, Burrell, and Thompson (1992) studied the measurement

integrity of the instrument and found high internal

consistency (alpha coefficients of .91 for the total score

and .65 to .86 for the original subscale scores).

The survey was subsequently used with 229 parents to

determine parents' perceptions of the clinical utility of the

instrument. As an alternative validation approach, parents,

perceptions were considered (Buysse, Smith, Bailey, &

Simeonsson, 1993). Results of the parental validation of the

FNS indicated that parents perceived the survey as helpful in

sharing their needs with professionals. Hispanic mothers

were among those who rated the instrument highly. These

findings suggest that the survey is appropriate to be used by

members of the Hispanic community.

The FNS has recently been used successfully by

researchers in the field (Bailey & Blasco, 1990; Bailey,

Blasco, & Simeonsson, 1992; Bailey & Simeonsson, 1988).

Research findings confirm that the FNS is both appropriate

for minority families across social class levels and also

acceptable across a variety of cultures (e.g., Anglo-

American, African-American, Hispanic, Asian, and European).

That the scale has already been used and translated into at

least five different languages attests to its usefulness and

broad-based acceptance in various cultural groups.

For this study the Family Needs Survey was used to

assess family needs. Reliability was determined on the data

collected for this study. In response to the survey's

format, an Alpha coefficient was used to determine the

internal consistency reliability for each of the seven

domains. Results of such analysis are presented in Chapter


The Family Support Scale

Family support has been identified by researchers as a

mediator of family stress and family coping (Dunst, Trivette,

& Cross, 1986). In my study, support was defined as

resources or assistance provided by others to the children

and their families. The Family Support Scale, developed by

Dunst, Jenkins, and Trivette (1984) and revised in 1988

(Dunst, Trivette, & Jenkins, 1988), is an 18-item, self-

report scale that helps determine the types of help and

assistance that constitute the family social network. The

instrument measures the perceived helpfulness of sources of

support provided by others as parents rear their young

children with disabilities.

The original scale included 18 items (plus 2

respondent-initiated items) rated on a 5-point scale ranging

from not at all helpful (1) to extremely helpful (5). The

authors employed a principal components factor analysis to

discern the factor structure of the scale. Results yielded

five factors: informal kinship, spouse/partner, social

organizations, formal kinship, and professional support.

These five factors were used in this study as dependent

variables measuring mothers' sources of support.

The reliability and validity of the Family Support Scale

(FSS) were surveyed in a study with 139 parents or primary

caregivers of preschool children with disabilities or at risk

for disabilities. Statistical analyses of the reliability

and validity of the scale were reported by the researchers

(Dunst, Trivette, & Jenkins, 1988). The correlation between

the 18-scale items and the total scale scores was examined by

computing an alpha coefficient. The average correlation was

found to be r = .91 (p < .001) for the total scale scores.

Internal consistency reported by the alpha coefficient was

.85. The split-half reliability, corrected for length using

the Spearman-Brown formula was .75. Test-retest reliability

was measured after a month and reported as r = .75 (SD = .17,

D < .001) for the average correlation among the 18 scale

items. A second measure of test-retest reliability was taken

18 months apart and was reported to be r = .41 (SD = .18 (p <

.05) for the 18 scale items and r = .47 (p < .01) for the

total scale scores.

The FSS measures independent sources of social support.

Criterion and content validity of the total scale were

established in a number of studies. The total scale scores

consistently related to several parent, family, and

parent-child outcomes including personal well-being (average

r= .28, p < .01), family unit integrity (average r = .18, p

< .01), and parent perceptions of child behavior (average r

.19, p < .05). All scale items measure aspects of support

paralleling the conceptual model upon which the scale was

based. According to Dunst, Jenkins, and Trivette (1984) and

Dunst, Trivette, and Jenkins (1988), the FSS is both a

reliable and valid family assessment instrument.

Reliability data for each of the nine factors was not

established by researchers; therefore, for this study

reliability was determined on the data collected. The scale

is characterized by a multiple-scored format, with a Likert

scale from 1 to 5. Based on this scale format, a coefficient

alpha rather than the Kuder-Richardson method was used to

determine the internal consistency of each factor.

Based on its demonstrated psychometric properties, the

FSS is considered an appropriate assessment tool for this

study. This instrument facilitates information about the

quantity and quality of parent sources of support. Responses

provided by Puerto Rican mothers represent a basis for

further investigation into specific aspects of the social

support networks of this population and the help or lack of

help they perceive in both their native country and the

United States. The FSS can also be used to assess the

success of interventions designed to address Puerto Rican

mothers' support system.


The assessment of the child's characteristics is

considered a relevant variable to the study due to the impact

these characteristics may have on the family system. The

ABILITIES Index developed by Simeonsson and Bailey (1988) has

been carefully selected for this investigation to document

the nature and degree of the child's level of disability. It

provides an individual disability profile that could

ultimately relate to the caregiving demands experienced by

the family and their access to resources. This index has

been extensively used in a variety of contexts and is widely

know for its reliability when used to compare parental and

professional agreement in the rating process. The ABILITIES

Index was described by professionals and parents as an

accurate, useful, and succinct way to describe the abilities

and limitations of young children (Buysse, Smith, Bailey, &

Simeonsson, 1993).

The ABILITIES Index describes children with disabilities

in nine areas of functioning: audition, behavior and social

skills, intellectual functioning, limbs, intentional

communication, tonicity, integrity of physical health,

eyes/vision, and structural status. It was designed to

assess general functional characteristics rather than

specific skills based on the observers' judgment. Parents

responded to a Likert scale (from 1 to 6) that described

successive levels of ability/disability. These ability/

disability levels ranged from normal or typical to profound.

There are 19 items to be rated among the previously described

areas of functioning. The ABILITIES Index yields a profile

of the child's functional abilities.

To assess the instrument's psychometric properties, a

study with 130 parent-teacher pairs, 130 parent-specialist

pairs, and 125 teacher-specialist pairs was conducted

(Bailey, Simeonsson, Buysse, & Smith, 1993). Inter- and

intrarater reliabilities of the index were computed to

determine the extent of variation in ratings. Results

indicate an overall agreement across the three comparison

groups of 67.2%. Reliability was also computed for raters

whose scores were within 1 point of agreement (86% across all

raters), intraclass correlations (mean rho of 0.6 across all

raters), and weighted coefficient kappas for multiple raters

(mean of .60) were also calculated.

Stability of ratings derived after 34 days from the

first ratings indicated higher coefficients than interrater

reliability. Raters averaged 91% agreement on their scores

within 1 point difference, intraclass correlation

coefficients averaged 0.70, and kappas averaged 0.77 in the

moderate range. These methods of determining reliability of

the instrument provide detailed information on its

psychometric characteristics, unlike reliability scores based

on total scores.

The difference in education, experience, skills, and

perspectives among the raters jeopardized the instrument's

interrater reliability. It is even suggested that in some

respects the reliability scores depict the instrument's

validity when the nature of the raters is considered. In

conclusion, the instrument is considered a useful tool to

develop a child's profile of functional abilities leading to

appropriate individual intervention plans (Bailey,

Simeonsson, Buysse, & Smith, 1993).

The ABILITIES Index was used in a recent study designed

to extend the knowledge about the nature and reliability of

the clinical judgment of mutidisciplinary team members rating

the functional abilities of young children with mental

retardation and other disabilities (Bailey, Buysse,

Simeonsson, Smith, & Keyes, 1995). Findings confirm the

reliability of the instrument when nearly 90% of the ratings

among team members were within 1 point difference. Some of

the differences resulted from deferred ratings of experts in

a particular area. The ABILITIES Index was demonstrated to

be a reliable and highly useful assessment tool. Table 3-1

presents the selected research instruments and the areas or

domains explored by them.

Table 3-1

Summary of Instrumentation

Family Needs Survey

Family Support Scale


Demographic Form

Family & Social Support
Explaining to Others
Financial Needs
Child Care
Community Services
Professional Support
Informal Kinship
Social Organizations
Formal Kinship
Professional Support
Behavior & Social Skills
Intellectual Functioning
Intentional Communication
Physical Health
Structural Status
Mother's Marital Status
Child's Birth Date/Age
Years of formal education
Government assisted living

Data Collection Procedures

Potential participants were identified as Puerto Rican

mothers of children who were younger than 6 years of age and

who had disabilities including cognitive delay. Recruitment

efforts were devoted to reach the targeted population

following a predetermined process. Contact letters and

brochures explaining the purpose and procedures of the study

were sent to 26 school districts in the state of Florida and

Puerto Rico. Fifty-three groups and organizations that work

with mothers of young children with disabilities were also

contacted. Each contact was provided with a thorough

description of the nature of the study and of the eligibility

criteria for participants. Follow-up on contacts was also

done over the phone. Screening potential participants was

necessary because most counties had data on Hispanics but

made no distinctions about their nationalities. Verifying

mothers' place of birth was consistently done in the initial


Each agency contacted specified its guidelines for

assisting in the recruitment process. Emphasis was given to

recruitment procedures that ensured confidentiality. Some

contacts provided a list of names, addresses, and phone

numbers of potential participants from their data base.

Mothers from those data banks were contacted by mail and

phone, when available, to provide them with information about

the nature and procedures of the research. Interviews were

scheduled once the mothers had agreed to participate in the

study. Other contacts provided potential participants a

packet of information about the research including a letter

of consent for the initial contact, explained the study to

the mothers, and encouraged them to participate. Once the

parental consent was received, telephone and mail contact was

used with the mothers to schedule interviews.

In addition to governmental agencies, parents, churches,

and private organizations were provided packets of

information. Some of these private organizations chose to do

the mailing or phone contacts to protect the confidentiality

of their members, while others provided a mailing list.

Every potential participant was contacted either by phone or

was sent an information packet in the mail.

Research Instrumentation and Procedures

Interviews were done by the student investigator, by a

research scientist of the Latino Family Research Project, or

by the student research assistant. These three researchers

were bilingual Puerto Rican females currently active as

educators. The student investigator, a doctoral candidate in

special education, and the research assistant, a PhD in

education, were trained for the interview process. Training

included four formal sessions (32 hours) on interviewing

techniques, role playing, and pilot testing of the

instruments. The student research assistant, a student

finishing her major in early childhood education, was trained

by the student investigator in Puerto Rico but was able to

visit the University of Florida for further training and


These researchers made the initial contact with the

participants. Each participant was scheduled for a visit

according to their preference regarding date, time, and place

to meet. Upon arrival, the interviewer devoted several

minutes to establish a good rapport with the participant.

The nature of the research and the purpose of the visit

described on the mailed packet was explained personally. The

consent form was read and discussed with each participant,

allowing time for questions regarding the procedures and

confidentiality issues. The consent forms were written

according to University Internal Review Board criteria and

was available in both English and Spanish.

Although the interview followed a structured format

delineated by the assessment instruments, efforts were made

to create natural conversation. Participants were allowed to

digress from the topic, yet they were always guided back by

the interviewer. Definite answers to the questions were

requested from the participants, avoiding ambiguity and


Once the instruments were completed, the interviewer

provided closure to the interview. Participants were given

time once more to clear their doubts about the study or

simply engage in an unstructured conversation. Some

participants were willing to share information about their

extended family, show their house, show family pictures, and

serve a cup of coffee.

Contact with the family transcended the visit.

Participants were contacted by the interviewer to reiterate

her gratitude and ensure that mothers had received the check

that they were entitled to for their time and collaboration.

Monetary compensation was established at a rate of $12.50 an


Procedures for the selection of the items for the

demographic form as well as the selection of the scales were

discussed previously in this chapter and are thus not

included in this section. Due to the nature of the sample,

the survey scales required translation to match the native

language of the targeted population. The surveys were

translated into Spanish and reviewed by a group of 10

Hispanic professionals from education and related fields.

The formal education of this group ranged from master's to

doctoral degrees. Participants of this expert group were

males and females of middle-high socioeconomic status who had

experience interviewing families and were fully bilingual

(Spanish-English). The group included representation of

Puerto Ricans, Mexicans, and Cubans.

Reviewers were asked to read both the English and

Spanish versions of the scales, letters, and materials.

Verbal and written feedback were requested on the accuracy of

the translation, its readability, clarity, response format,

and the helpfulness of visual aids. Information provided by

this group was incorporated in the final protocol. No other

adaptations were necessary because the items addressed

clearly the areas to be assessed. Two sets of consent forms,

brochures, protocols, and visual aids, one English and one

Spanish, were developed. Participants were asked about their

choice of language for the interview.

Visual aids were developed to prompt the participant

into the response mode of the scale and thus facilitate the

flow of the conversation. Copies of the visual aids used and

full protocol are found in Appendix C.

Dissemination and Processing Procedures

The high regard for confidentiality characterizing early

intervention programs, schools, and some private

organizations prevented the disclosure of personal

information of potential participants. Agencies differed in

their requirements for releasing information about parents.

Although the study had the approval from the University of

Florida Institutional Review Board (IRB) (Appendix D), some

counties required their own approval of the study. After

getting county approval, some agencies provided their

listings while others assigned a contact person to deliver

the packet of information to mothers. Once the researcher

received written or verbal consent from the participants,

interviews were scheduled.

Participants were assigned an identification code and

personal information was deleted from all records except the

master list, which was strictly confidential. Efforts were

made to contact every potential participant, which included

tracking down families who had moved or changed telephone

numbers. Records show a 98% acceptance rate among the

eligible Puerto Rican mothers contacted for participation.

Follow-up after the interview required the mailing of

the check (monetary compensation for their time).

Treatment of the Data

A two-phase approach was followed in the analysis of the

data. First, data were analyzed to yield descriptive

statistics for independent variables. Second, appropriate

statistical analyses were conducted for each hypothesis. For

data analyses, significance was set at the p < .05 level.

Hypotheses were rejected only when regression coefficients

were significant at the preestablished level. Descriptive

statistics for all variables under investigation included

frequencies and percentages for categorical variables and

means and standard deviations for continuous variables.

For the purpose of descriptive analysis of the obtained

scores of the FSS and FNS, not applicable responses were

not included in calculating means, modes, or standard


Correlations among independent variables as well as

between independent and dependent variables were obtained.

Categorical data were coded with a number value for analysis.

Correlations were examined to identify and summarize

relationships existing among variables. Table 3-2 presents

the matrix of independent and dependent variables of this


Table 3-2

Matrix of Independent and Dependent Variables

Independent Variables

Dependent Variables

marital status
level of education

Government assisted

Child's extent of delay

Family's geographical
subgroups (PR/FL)

Family Needs

Family Support

Description and Analysis of Research Questions

Research questions are presented and described

individually. Table 3-3 presents information regarding the

research questions, the instruments selected to address the

questions, and the statistical analysis to explore the


Table 3-3

Summary of Research Questions, Instruments, and
Statistical Analysis

Research Questions Instruments Analysis

Q1 Are there
differences on family
needs across within
Q2 Are there
differences on family
support across

Q3 Are there any
correlations among
family needs and
mother and child
pooled within

Q4 Are there any
correlations among
family support and
mother and child
pooled within

Q5 Is there a
correlation between
family needs and
family resources
pooled within

Family Needs

Family Support

Family Needs

Family Support

Family Needs
Family Support





Pearson Product

Research Question 1

Do Puerto Rican mothers of young children with

disabilities who live in Puerto Rico express family needs

similar to those expressed by Puerto Rican mothers of young

children with disabilities who reside in Florida?

This question stated the possible differences between

the perceived needs of Puerto Rican families of young

children with disabilities residing in Puerto Rico and their

counterparts residing in Florida. (See Table 3-2 for more

specific information regarding the number and identity of

variables for each hypothesis.) Mothers' perceptions of

their needs (dependent variable) were examined across

geographical subgroups (independent variable). The measure

used for perceived needs was the FNS total needs score. A

multiple regression analysis was used to examine the data.

Descriptive information about the FNS domain subscores across

geographical subgroups was also reported.

Research Question 2

Are there any differences between the sources of family

support reported by Puerto Rican mothers of young children

with disabilities of each geographical subgroup?

The measure used for perceived needs was the FSS total

support score. A multiple regression analysis was used to

examine the data. Descriptive information about the FSS

domain subscores across geographical subgroups was also


This research question addressed possible differences in

mother's perceived support system (e.g., family,

professional, community) as determined by the Family Support

Scale. The relationship between perceived family resources

of Puerto Rican mothers of young children with disabilities

residing in Puerto Rico and their counterparts residing in

Florida was determined. The measure used for perceived

family support was the FSS total support score. A multiple

regression analysis was used to analyze perceived family

support (dependent variable) across geographical subgroups

(independent variable). Descriptive information about the

FSS domain subscores across geographical subgroups was also


Research Ouestion 3

What family demographic variables significantly predict

family needs across geographical subgroups?

This research question considers possible correlations

among the demographic variables and mothers' perceived needs

across geographical subgroups. Demographic variables were

coded according to preestablished criteria previously

discussed in this chapter. The FNS total needs score was

used to measure perceived needs. Multiple regression was

used to determine the relationship between need and each

demographic variable while controlling for the remaining

mother and child characteristics.

Research Question 4

What family demographic variables significantly predict

family resources across geographical subgroups?

This research question suggests possible correlations

among the demographic variables and mothers' perceived

resources and support across geographical subgroups.

Demographic variables were coded according to preestablished

criteria previously discussed in this chapter. The Family

Support Scale (FSS) total support score was used to measure

perceived resources. Multiple regression was used to

determine the relationship between each support and

demographic variable while controlling for the remaining

mother and child characteristics.

Research Question 5

What relationship, if any, exists between family needs

and family resources within each geographical subgroup?

Question 5 addresses the possible correlations between

mothers' perceived needs and their perceived resources for

each geographical subgroups. Family perceived needs were

measured by the Family Needs Survey (FNS) total need score.

Family perceived resources were measured by the FSS total

support score. Relationships were investigated using a

Pearson Product Moment correlation.

Figure 3-1 depicts the relationship among family needs,

resources, and mother and child characteristics addressed in

the five research questions.