Citation
Ecological perspectives on NIDDM illness narratives

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Title:
Ecological perspectives on NIDDM illness narratives an examination of explanatory models in Hispanic households
Creator:
Torres, Jamie Christine
Publication Date:
Language:
English
Physical Description:
ix, 151 leaves : ; 28 cm

Subjects

Subjects / Keywords:
Non-insulin-dependent diabetes ( lcsh )
Hispanic Americans -- Health and hygiene ( lcsh )
Health -- Cross-cultural studies ( lcsh )
Health ( fast )
Hispanic Americans -- Health and hygiene ( fast )
Non-insulin-dependent diabetes ( fast )
Genre:
Cross-cultural studies. ( fast )
bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )
Cross-cultural studies ( fast )

Notes

Bibliography:
Includes bibliographical references (leaves 148-149).
General Note:
Department of Anthropology
Statement of Responsibility:
by Jamie Christine Torres.

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Source Institution:
|University of Colorado Denver
Holding Location:
|Auraria Library
Rights Management:
All applicable rights reserved by the source institution and holding location.
Resource Identifier:
60404076 ( OCLC )
ocm60404076
Classification:
LD1190.L43 2004m T67 ( lcc )

Full Text
ECOLOGICAL PERSPECTIVES ON NIDDM ILLNESS NARRATIVES:
AN EXAMINATION OF EXPLANATORY MODELS
IN HISPANIC HOUSEHOLDS
Jamie Christine Torres
B.A. Colorado College, 1999
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
of the requirements of the degree of
Master of Arts
Anthropology
2004
by


This thesis for the Master of Arts
degree by
Jamie Christine Torres
has been approved
by


Torres, Jamie Christine (M.A. Anthropology)
Ecological Perspectives on NIDDM Illness Narratives: An Examination of
Explanatory Models in Hispanic Households
Thesis directed by Assistant Professor John Brett
ABSTRACT
Hispanics face a disproportionate risk of non-insulin dependent diabetes
mellitus (NIDDM), almost twice that of Non-Hispanic Whites. It has been
argued that greater efforts be taken to create more culturally competent
approaches to diabetes education and intervention efforts in this population.
While explanatory models have been utilized extensively in an attempt to
understand the personal beliefs and attitudes held about NIDDM, this study
combined the use of explanatory models with understandings of ecological
models to gain a larger understanding of the family, community, cultural and
social/economic world in which individuals live. Twenty interviews were
conducted with self-identifying Hispanics. Hispanic female heads of
household were interviewed in order to gain a perspective on their belief
system regarding diabetes. To further understand the dynamic of her shared
environment, interviews were also conducted with her co-head of household.
Interviews were transcribed and coded for emerging themes of both personal
in


explanatory models as well as the environmental variables influencing them.
Environmental variables were analyzed with the following levels of influence:
individual, family, community, cultural/historical, and social/economic/industry
related. The various variables identified by interviewees at the forenamed
levels of influence are discussed as well as possible implications in utilizing
an ecological model in conjunction with explanatory model elicitation for
achieving a more complete understanding of the illness experience.
This abstract accurately represents the content of the candidates thesis.
I recommend its publication.
Signed
John A. Brett
IV


ACKNOWLEGEMENT
I Would like to extend thanks to the following individuals and organizations for
their support in this endeavor.
Dr. John Brett, thank you for the tremendous level of support and guidance
you provided me in this academic journey.
The residents of the San Luis Valley for their valued participation in this study.
Rocky Mountain Prevention Research Center, Alamosa, Colorado, whose
assistance was crucial and without which the project may have not been
possible.
And last, but not least, to my mother and sister, whose support and
encouragement have been unwavering.


CONTENTS
List of Figures ............................................ viii
List of Tables ............................................. ix
CHAPTER
I. INTRODUCTION ......................................... 1
Background and Significance ....................... 5
Explanatory Models and Ecological Models .......... 7
II. METHODS ............................................. 20
Data Collection .................................. 22
Sample ........................................... 23
Data Management and Analysis ..................... 26
Human Subject Review ............................. 29
III. FINDINGS ............................................ 30
Explanatory Models ............................... 30
Defining Diabetes ........................... 30
Etiology .................................... 33
Time and Mode of Onset ...................... 39
Pathophysiology ............................. 40
VI


Severity and Duration .......................... 42
Fears .......................................... 43
Chief Problems Caused .......................... 46
T reatment ..................................... 48
Ecological Model .................................... 49
Individual Level Highlight ..................... 53
Individual Level Discussion .................... 54
Family Level Highlight ......................... 72
Family Level Discussion ........................ 74
Community Level Highlight ...................... 87
Community Level Discussion ..................... 89
Culture/History Level Highlight ............... 101
Culture/History Discussion .................... 103
Social/Economic Level Highlight ............... 112
Social/Economic Level Discussion .............. 116
IV. DISCUSSION ............................................ 140
APPENDIX ........................................................ 147
A. INTERVIEW QUESTIONS ...................................... 147
REFERENCES CITED ................................................ 148
Vll


FIGURES
Figure
1.1 General Conceptualization of an Ecological Model ........... 14
3.1 Ecological Model Framework ................................. 49
3.2 Influences Upon EMs ....................................... 52
3.3 Individual Level Influences ................................ 53
3.4 Family Level Influences .................................... 72
3.5 Community Level Influences ................................. 87
3.6 Culture/History Level Influences .......................... 101
3.7 Social/Economic Level Influences .......................... 112
viii


TABLES
Table
2.1 Timeline
21
IX


CHAPTER 1
INTRODUCTION
In the United States approximately 17 million people have been
diagnosed with Type II Diabetes Mellitus, also known as Non-insulin
Dependent Diabetes Mellitus (NIDDM) (NIH 2002). Hispanics constitute one
of the largest ethnic populations facing this disease with approximately 10.2
percent prevalence (NIH 2002) and are almost two times more likely to die
from diabetes complications than non-Hispanic whites (Lipton et al. 1998;
Carter et al. 1996). In an effort to understand patient experience with the
disease as well as increase medical regimen adherence, elicitation and
assessment of patient explanatory models has emerged as providing
important bases for education and intervention as well as improvement of
communication between patient and practitioner (Mendelson 2002; Alcozer
2000; Hunt et al. 1998; Zichi Cohen et al. 1993).
Recent diabetes research in the Hispanic population, specifically the
Mexican-American population, has focused on identifying a cultural
explanatory model (Alcozer 2000; Oomen et al. 1999; Hunt et al. 1998;
Cravey 2001; Lipton et al. 1998). Explanatory models are the ways in which
individuals confronted with disease and illness incorporate the discrete and
1


tangible information provided by the biomedical community with personal
history and experiences provided in their own lives, socio-cultural
environment and their community (Kleinman 1988), Explorations into
understanding explanatory models of illness are argued to be key to
implementing successful education and management efforts. Individuals do
not exist in a vacuum; they are impacted and influenced on a daily basis by
their environment (Booth et al. 2001; Wetter et al. 2001). These interactions
between individuals and their environment are defined theoretically as
ecological models of behavior and examine the importance of, and ways in
which environmental forces and factors shape individual psychological and
behavioral understandings and actions. There is increasing recognition of
the value in understanding how environment shapes and informs personal
understanding of illness, disease and health and further how it affects
individual action and behavior (Kleinman 1988).
There are a number of cultural groups within the Latino or
Hispanic category. Each of these groups has unique and highly dynamic
characteristics and worldviews. Despite the differences, some cultural
regularities exist including an emphasis on strong familial interdependence
and traditional male and female gender roles (Brown et al. 2000). It has
2


been suggested that future research should focus on gender differences
associated with NIDDM self-care skills based on the cultural dynamic
present in this population in which distinct and traditional gender roles are
typical (Brown et al. 2000).
While previous studies (Mendelson 2002; Alcozer 2000; Hunt et al.
1998; Zichi Cohen et al. 1993) have promoted the understanding of patient
explanatory models in general as providing bases for intervention and
management, none have evaluated those models specifically with NIDDM in
this population in a broader ecological context. Understanding
environmental influences may help to explain culture specific and gender-
specific differences in health behaviors and health outcomes. This study
used a qualitative approach, which elicited illness narratives and examined
explanatory models of NIDDM in terms of their influence by environmental
factors on self-care and management. In a larger sense, this study focused
on how environmental factors inform personal explanatory models about
NIDDM.
Research Question. How do environmental factors (i.e. social, cultural,
economic) influence explanatory models of NIDDM, specifically those
3


factors associated with self-care and diabetes management, in a Hispanic
household setting?
Specific Aims
To elicit illness narratives about NIDDM and diabetes self-management
from female heads of household, their co-head of household counterpart,
and identified individuals selected as involved in the female head of
households diabetes management.
To evaluate the influence and impact environmental forces have on
shaping the behavior and psychologies of these households surrounding
NIDDM.
The aims of this project were to explore the impact of environmental
factors on forming explanatory models of NIDDM in Hispanic households.
Specifically, what are some of the forces (social, cultural, economic, etc.)
that influence explanatory models of NIDDM. Explanatory models were
elicited through personal interviews with the female heads of household
diagnosed with NIDDM as well as with the co-head of household. Analysis
of the data examined the extent to which environmental factors influence
personal and household understandings of NIDDM. Qualitative methods, in
4


the form of semi-structured interviews, were most applicable for this study
because of the ability for the informant to guide the general discussion and
interview process. This study was concerned primarily with exploration and
elucidation of NIDDM explanatory models within this culture group.
Background and Significance
Diabetes is a chronic illness, marked by a variety of potential
complications including retinopathy, kidney disease, nerve disease,
peripheral vascular disease and heart disease (Carter et al. 1996). Diabetes
is a syndrome which involves both metabolic and vascular abnormalities
(NIH 2002). It is characterized mainly by high levels of glucose in the blood,
which is a result of defects in either insulin production and/or insulin action
(NIH 2002). There are two types of diabetes, Type I or Insulin-Dependent
Diabetes Mellitus (IDDM), and Type II or Non-Insulin Dependent Diabetes
Mellitus (NIDDM). The primary difference between the two types of diabetes
is in their pathophysiology, IDDM generally derives from a metabolic defect
and presents early in life, whereas NIDDM is largely a preventable and/or
controllable disease derived from a variety of environmental or lifestyle
factors. Type II Diabetes is typically an adult-onset disease and is caused
by an inability of the cells of the body to utilize insulin properly (NIH 2002).
5


While most often diagnosed in adults, in certain populations NIDDM is
increasingly being diagnosed in children and adolescents (Rosenbloom et
al. 1999; Neufeld et al. 1998). Type II Diabetes constitutes 90-95% of all
diabetes cases in the United States (NIH 2002, Wang and Fenske 1996).
Nationally about 17 million people have diabetes and one million new cases
are diagnosed each year in individuals 20 years of age and older (NIH
2002). Nationally, Hispanics are twice as likely to be diagnosed with
diabetes as Non-Hispanic Whites and are experiencing the very gravest
complications including dialysis, blindness and amputation (Lipton et al.
1998). This health disparity has led some to believe that cultural barriers
may exist between patient and practitioner and even further, barriers
between patient and environmental requirements and limitations (Brown et
al. 2002; Brown et al. 2002; Oomen et al. 1999).
Latinos associate primary cause for diabetes onset to be hereditary
(Oomen et al. 1999; Alcozer 2000; Hunt et al. 1998); however, how that
knowledge is translated into everyday action within a family environment
remains to be examined. Previous studies have looked at the experience of
Latina women diagnosed with diabetes (Oomen et al. 1999; Alcozer 2000,
Lipton et al. 1998). Latinas typically tend to put personal needs secondary
6


to family needs. Personal dietary habits and individual practices for diabetic
treatment regimens are seen as self-indulgent (Oomen et al. 1999; Lipton et
al. 1998; Brown 2002). The term Marianismo (Oomen et al. 1999) has been
defined as the ideology among Latinos that the Latina womans dignity
derives from self-sacrifice for the family. Buying foods that are contrary to
her familys tastes or extending the family budget for prescribed medications
may appear selfish to the Hispanic woman with diabetes (Oomen et al.
1999:221). This observation is evidence of why its important to evaluate
dynamics beyond the diabetic individuals perspective and experience.
Studies show that Latinos with diabetes are aware of the biomedical
information and perhaps the implications of the disease, but cultural rules
and norms and, to a greater extent, environmental factors dictate behavior
beyond individual needs (Alcozer 2000, Lipton et al. 1998, Oomen et al.
1999).
Explanatory Models and Ecological Models
Explanatory models (Kleinman 1988) provide one of the two
theoretical models guiding this study. Obtaining explanatory models is an
effective means to obtain valuable information about the ways in which
individuals and their families make sense of, respond to, and cope with
7


illness (Alcozer 2000). This is particularly useful in the clinical setting when
the explanatory models of practitioner and patient may differ. Explanatory
models are important particularly for ethnic groups and serve to influence
the perspectives that individuals, families and communities have about
health and illness (Kleinman 1988). These informal descriptions of what an
illness is about have enormous clinical significance: to ignore them may be
fatal (Kleinman 1988:121). Explanatory models are in contrast to disease
models, which are the non-sociological or biomedical etiology of disease
and its biological consequences. Explanatory models consist of attitudes
about health and illness which underlie opinions about disease and illness
and how we as individuals should behave in response to the illness
experience (Kleinman 1988). The formation of these models occurs with
specific illness diagnosis and experience.
Kleinman (1988) developed the concept of explanatory models which
serve to explain the ways in which meaning is created through illness
experience. Explanatory models are created through social and cultural
experience, identity and are typically specific to groups based on their
cultural norms and knowledge base. As a theoretical base, understanding
the process by which explanatory models are constructed serves to inform
8


perceptions of health and ultimately guide decision processes regarding
health, illness and disease. Explanatory models help us to understand the
reality of the patient and their personal perceptions of what they are
experiencing. This experience may be different from epidemiological or
biomedical understandings of disease pathology.
Biomedical research often reports findings in terms of risk factors and
morbidity and mortality. By contrast, explanatory models are more difficult
to conceptualize or generalize and must be evaluated on an individual basis
taking into consideration personal identity, experience, history and
environmental stimuli. They involve personal perceptions which often
manifest at the unconscious level (Mendelson 2002) and are shaped and
informed by environmental experiences and influences. This study
examines explanatory models of female Hispanic heads of household who
have been diagnosed with NIDDM. To further evaluate the environmental
influence on NIDDM explanatory models this study also examines those of a
secondary head of household who often shares the responsibility of family
lifestyle decisions with the female head of household.
Alcozer (2000) evaluated explanatory models among Mexican
American women with NIDDM. She found that the complications arising
9


from diabetes were constructed into explanatory models, which centered on
family and community arenas. Through qualitative methods, this study
identified an explanatory model, which incorporated valuable, although
general and abstracted, biomedical information such as the heritable nature
of diabetes and the life threatening nature of the disease with community
and family oriented experiences. It is the combination of these two
knowledge bases that form and guide the individual understanding and
explanatory model in this ethnic population. Likewise, Hunt et al. (1998)
also looked at Mexican American women diabetes patients causal stories or
explanatory models. This study found that patients explanatory models of
diabetes are driven by the effort to connect their illness, in a personal way,
to their everyday experience and history. Similar to Alcozer (2000), Hunt et
al. (1998) found that patients accepted biomedical explanations for cause
such as hereditary and genetic causes of diabetes while at the same time
incorporating personally relevant explanations in their causal stories (Hunt
et al. 1998:959).
Explanatory models have been criticized for being utilized
superficially. According to Lock (1995), examination of explanatory models
has been limited to the clinical setting, usually in interactions between the
10


patient and physician. By restricting the scope in which explanatory models
are elicited, a narrow perspective results. Lock (1995) emphasizes that
larger social, political and environmental arenas remain to be incorporated
into understanding the patients explanatory model since they are highly
influential aspects of behavior and individual perception. The importance of
recognizing the cultural construction of health, illness, and health care, and
hence the values embedded in any medical system and all medical
encounters will be stressed (1995:100-101). Drawing on these aspects will
be important for future research, particularly in studies which focus on
eliciting illness narratives and understanding explanatory models.
The preeminent theme taken from previous studies speaks to the
importance of acknowledging cultural knowledge and understanding for
effective diabetes treatment. Additionally, in the Latino community, given
the characteristic nature of the culture to be family- and community-
centered, its important to evaluate health beliefs and perceptions beyond
the diabetic individual because both long and short-term behavior changes
are rooted in knowledge derived from these sources. Studies show Latinos
with diabetes know the biomedical information and the complications of the
disease, in very general and abstract terms (Alcozer 2000; Engel 1995), but
11


cultural rules and norms may dictate behavior in contrast to medical
recommendations. It is thus important to know what perceptions are driving
the family unit and what environmental influences exist. If an understanding
of how environmental factors inform personal narratives and the
construction of explanatory models can be identified within the household,
perhaps treatment and intervention efforts can be more effective for the
family member with diabetes.
Ecological models specify that environmental factors can influence
behaviors surrounding health, illness and disease. In an ecological model of
health, behaviors are influenced by interpersonal, social, and cultural and
physical environment variables. The environment is constituted of complex,
multi-dimensional variables, and the influences of environmental factors
likewise create a complex and multi-dimensional behavioral context for
individuals. The understanding and description of the multiple levels of
cultural and physical environmental variables are highly relevant for
understanding changing health behaviors (Sallis and Owen 1997).
Emphasized in studies of an ecological focus is the individual and the
environmental factors surrounding them (Booth et al. 2001). A focus upon
the individual includes an emphasis on strategies for individual
12


understanding and according education and treatment efforts toward that
individual for greater long-term success (Booth et al. 2001).
Ecological models have been compared with the approach medical
communities have for understanding the host-disease-environment model
generally regarded in discussions of infectious disease to discussions
regarding chronic disease (Sallis and Owen 1997). NIDDM is largely a
chronic disease which is influenced by lifestyle dynamics including diet and
physical activity, in addition to biological factors. Of interest in this project
are the environmental factors which inform individual understanding of
diabetes and how those factors influence the construction of explanatory
models. In this study, environmental factors are divided into five categories
of influence, those of the Individual, Family, Community, Culture/history, and
the largely Macro-environmental, Social/Economic/Industrial. These
divisions are operationalized through spheres of influence, one being larger
in size and degree than the spheres encompassed within. Figure 1
demonstrates the strata of influence as conceptualized in an ecological
model. The boundaries separating the various levels of environmental
influence serve only as conceptual tools, they do not represent rigid
13


separations as the very essence of an ecological model assumes
interaction.
Figure 1.1
General Conceptualization of an Ecological Model
This is an approach which presents the understanding that people
are but one component of the larger behavior-setting system, which restricts
the range of their behavior by promoting and sometimes demanding certain
actions and by discouraging or prohibiting others (Sallis and Owen
1997:404). Using an ecological model we can attempt to understand health
behavior as influenced by factors existing within the family or household
setting, by factors within and around the community, factors of culture and
14


history as well as factors garnered from the social, economic and industry
related fields.
Among the first to operationalize ecological models was Urie
Bronfenbrenner and colleagues (1979) who described three levels of
interaction of environmental variables: the microsystem, the mesosystem
and the macrosystem. The microsystem refers to behavior settings in
which the behavior or lifestyle takes place (Booth et al. 2001). The
mesosystem refers to interactions on an interpersonal scale with family,
work, and school and the macrosystem, refers to the influences of the
economy, public policy, and cultural ideology. These three levels
reciprocally interact with individual variables (Sallis and Owen 1997:407).
Since Bronfenbrenner, levels of interaction still include the concepts of
micro, meso and macro influences but have changed to further develop the
concepts of environmental influence upon and with the individual. What
continues to be evaluated are the ways in which environment, a complex
and multi-dimensional entity, can be understood in terms of the effects and
influences upon the health of individuals. The best way to create this
understanding is to break down the environmental entity into
comprehensible components and discover, from the perspective of the
15


individual, the important issues they face on a daily basis when making
decisions about their health, and more specifically, how those influences
help to construct what those individuals understand about their disease.
Once influences are assessed at all levels they then must be evaluated in
their relationship to one another. The multifactorial nature of determinants
from different domains (e.g., psychosocial, cultural, and environmental)
requires that they be studied in combination (Booth et al. 2001 :S17).
In this study, categories for the ecological model dimensions were
derived primarily from the literature (Wetter et al. 2001; Booth et al. 2001)
where at the center is the psychobiologic core which constitutes the most
intimate of individual construction. According to Booth et al. (2001 :S24) it is
the genetically programmed metabolism and behavior including stress
coping mechanisms, pleasure, pain management, desire and personal
beliefs. The second level of influence is the Family level. On this level we
look at interaction between family dynamics and family oriented issues as
they further relate to the individual and to the other levels. The Community
level follows and deals, on a larger scale, with those influences found and
perpetuated through the community in which the individual lives. The fourth
level of influence is the Cultural/Historical, which includes cultural ideology
16


and cultural nuances as well as anything historically relevant specifically to
the population in question. Finally, the Social/Economic/Industry level which
include the larger and more complex dynamics that the individual, family and
community encounter such as political, business or organizational factors.
Kleinman (1980) conceptualized the use and effectiveness of
understanding patient explanatory models as a tool for increasing
patient/practitioner relationships by learning how the patient made sense of
illness episodes and how they make decisions about treatments. His
intentions surrounded the clinical setting and improving patient and
practitioner communication. With this in mind, the focus was on the social
and cultural settings of the individual and this was accomplished by
investigating EMs in relation to the sectors and subsectors of health care
systems (1980:105). This framework was expanded upon in this study to a
larger environmental context to include, not only experiences and influences
by health care systems, but also influences on a micro-environmental level,
those of family and community and influences at a macro-environmental
level, those of socioeconomic status and access to resources, among
others. Kleinman (1980) emphasized that explanatory models about a
particular disease or illness experience infuse concepts, experiences and
17


beliefs from various sources including family and social network. EMs
interrelate illness beliefs, norms, and experiences and function as the
clinical guides to decisions... (1980:107).
Current models for diabetes education and intervention are centered
on a normative biomedical perspective which advocates self-efficacy and
individual ability to modify behavior and lifestyle by way of physical activity,
weight management, nutrition as well as medical monitoring (e.g. glucose
monitoring and medications). These however, may not be directly
applicable to a heterogeneous population, specifically to a Latino population
whose socio-cultural perspectives and priorities are different from the
cultural background driving biomedical perspectives. Some studies have
utilized other models to discover that the perceptions of disease by Hispanic
populations were conceptually different from those treating them. Hunt et al.
(1998) found current biomedical efforts for treatment to be contradictory to
the causal stories elicited by their Mexican American patients. In this case
the biomedical model for diabetes treatment predictions based on control
orientations did not correspond with the Mexican American womens
personal causal stories and understandings about diabetes. In order to
accurately and successfully impact health behavior it should be understood
18


what the individuals understands to be important influences and the sources
of those influences.
19


CHAPTER 2
METHODS
This project used qualitative methods in the form of semi-structured,
open-ended interviews to elicit explanatory models from female heads of
household diagnosed with NIDDM and from their co-head of household for
evaluation of environmental influences on thought and behavior surrounding
living with the chronic disease. Interaction between the principal investigator
and key informants relied on one-on-one interviews to elicit the relevant
information. Qualitative methods were most applicable because they allow
for informant driven interviews structured to a minimal extent by the
investigator. Of primary interest here were the perceptions and personal
influences of the key informants in their NIDDM illness narratives. As such,
this study considered a small sample of households as the depth of
information provided by each will illuminate the understanding of NIDDM
explanatory models and their influence by environmental factors. The study
took a total of twelve months to complete.
20


Table 2.1
Timeline
Month Activity
1-4 Preliminary ethnographic research and proposal preparation
4-6 Ethnographic research 20-30 interviews (10 households)
5-6 Transcription and coding of interviews
7-8 Analysis of Ethnographic data;
9-12 Final data analysis and write-up
12 Defense
Specific Aims
To elicit illness narratives about NIDDM and diabetes self-management
from female heads of household and their co-head of household
counterpart.
To evaluate the influence and impact environmental forces have on
shaping the explanatory models of these households surrounding
NIDDM.
The research question in this study is focused on how environmental
factors and stimuli influence the content of personal illness narratives of
NIDDM and diabetes management. This study draws from two primary
theoretical perspectives, explanatory models and ecological models. The
way in which the research question is framed, ecological models consider
external factors to be influential in the framework of personal explanatory
21


models of NIDDM. These external factors are considered to be those
outside the individual physical space and involve familial, social, cultural,
economic and industry-related influences.
The research question provided a framework for data collection. The
study focused on understanding personal narratives about NIDDM and
diabetes management of the female head of household diagnosed with
diabetes and her co-head of household. Twenty (20) semi-structured, open-
ended interviews were conducted in 10 households, two interviews per
household. Each interview lasted between 60-90 minutes. The interviews
were tape-recorded, transcribed and coded for emerging themes and
patterns. Coding of the interviews incorporated codes derived from both
ecological model literature as well as explanatory model literature.
Data Collection
Setting: A small town in the San Luis Valley, Colorado. The San Luis
Valley is located in South Central Colorado. The Valley is comprised of six
counties with a total population of approximately 47,027 (US Census data
2003). The valley is located within a mountainous basin with the Sangre de
Cristo mountain range to the east and the San Juan mountain range to the
west and sits at an average elevation of 7,544 feet. The population is
22


comprised of largely two racial/ethnic populations, Hispanics, with roughly
43% of the population, and non-Hispanic whites with about 54% of the
population. Other ethnic groups include American Indian, Asian/Pacific
Islander and African American who comprise the remaining San Luis Valley
population (US Census 2000). In the interest of confidentiality, the exact
town where interviews took place will not be named.
Sample
The study focused on household environment. For this focus twenty
(20) individuals representing ten households were recruited. Two
informants were recruited to represent each household. Within each
household, the primary interviewee was the female head of household who
has been diagnosed with NIDDM. The second interviewee was another
head of the same household. Selection was based on the following criteria:
(1) First informants who are female heads of household and who indicate
they share a household with another adult member (spouse, significant
other or family member), (2) English or Spanish speaking, self-identifying
Hispanics raised in the United States, (3) at least 25 years of age, and (4)
who have been diagnosed with NIDDM for at least 1 year. Second
informants were selected on the following criteria: (1) reside with the first
23


informant, (2) at least 25 years of age, and (3) are a spouse, significant
other, or family member to the first informant. The second informant was
not required to have been diagnosed with NIDDM. The second informant
represents an aspect of the environment of the first informant. Their
explanatory model of NIDDM is shaped by the environment and may act to
inform the model of the primary informant. Participation was based on
interest and was additionally limited by the interest of both the female head
of household interviewee and an adult family member residing in the same
household to be interviewed.
The methods employed in this study were open-ended* semi-
structured interviews. Questions and probes included in this interview are
similar to those suggested by Kleinman (1988) and utilized in a number of
studies of Latino diabetics (e.g., Alcozer 2000; Hunt et al. 1988; Oomen et
al. 1999). Additionally, questions drew from ecological models of health in
an effort to understand the influence of environmental factors (Sallis and
Owen 1997; Booth et.al 2001; Wetter et.al 2001). In order to obtain the
interviewees personal narratives of either living with diabetes or living with
someone who has diabetes, the open-ended approach is the best option
because it allows responses to be phrased in the interviewees own words
24


and elaborated and elucidated where they see fit. Interview probes were
introduced as a general guide to understand both explanatory models and
ecological influences but the interviewees responses reflected their own
perspective.
Interviews differed slightly in their focus depending on whether or not
the informant was the primary interviewee or the family member. Primary
informant interviews centered upon her personal experience with diabetes
and factors in her daily life that influence that experience. Primary
interviewees were asked about their experience with diabetes, their
knowledge base of diabetes and its personal meaning as well as the social,
cultural, and economic factors that influence their self-care and
management of diabetes. The interview began with a grand tour question:
In your own words, tell me about diabetes (Alcozer 2000). From here
probes were introduced that covered themes including cause, personal
meaning of diabetes, intensity of symptoms and/or complications, treatment
and care opinions (Alcozer 2000). The questions used are provided in the
appendix.
Family member interviews focused upon the shared environment,
their personal perspective and beliefs about diabetes and what they
25


understand to be factors influencing those perceptions. It is critical to
understand the dynamic of this shared environment, particularly in the
degree to which it acts as an influencing factor in the primary interviewees
own health beliefs and perceptions about diabetes. Family members were
asked similar questions to primary interviewees. The interview began with
the general question: In your own words, tell me about what you know about
diabetes. Probes were also introduced to evaluate their knowledge of
diabetes and their experience with the disease.
Data Management and Analysis
The data were collected over a two month period through in-depth
interviews with primary informants and family members. Primary and family
member interviews were timed as close as possible to each other so as to
avoid intra-familial discussion of interviews before they had been completed.
In most cases the interviews were conducted back to back, however, four
interviews were conducted with both interviewees together. Most (16)
interviews were conducted in the home of the informants; four were
conducted at a neutral location in town at the request of the interviewees.
All interviewees were asked if they felt comfortable having the interview tape
recorded, all but three interviewees consented. In the events when the
26


interviewee chose not to grant consent for tape recordings, hand written
notes were taken.
Interviews were identified only by a number and letter. Household
interviews were assigned a random number between one and ten. A letter
indicated whether or not the informant was the primary interviewee
(assigned letter A) or the family member interviewee (assigned letter B).
Interview 1A and 1B will identify one set of completed interviews of
household 1.
Interviews were transcribed in full to obtain a complete and
comprehensive account of the interview. Three interviews were conducted
primarily in Spanish and translated by the principal investigator during
transcription. All interview text translated from Spanish to English is held
within brackets, [ text ]. Additionally, any conversation text where the
principal investigator speaks is identified by < text >. Access to the interview
data was limited to the investigator and thesis advisor. Transcription of
interviews was performed by the principal investigator. Transcribed
interviews were attached into a single document and loaded into the
ATLAS.ti qualitative analysis computer program. Interview notes were also
loaded into ATLAS.ti and included in the same hermeneutic unit as the
27


interviews. All text was analyzed with ATLAS.ti/Version 4.2. A total of 65
codes were applied to the text. The code list was developed from existing
research in explanatory model elicitation and studies on ecological models.
Additional codes identified during the interview and analysis process were
added to the initial list of codes.
Once coding was completed, networks were created within ATLAS.ti
to more clearly understand the types of positive or negative influences
mentioned as well as facilitators or barriers to care and management.
Categories also analyzed in networks included access, causation, and onset
among others. These categories were further analyzed to evaluate themes,
relationships and linkages among interviewees. The codes identified as
barriers, for example, were separated by category to obtain an
understanding of exactly what were considered barriers. The coded
information was then inserted into an ecological model with the following
ecological categories: Individual, Family, Community, Cultural/Historical and
Social/Economic/Industry, depending upon where the interviewees
referenced those specific influences. Independent coding analysis was
performed on a section of interview data to ensure consistency in code
application and interpretation.
28


Human Subject Review
The University of Colorado Human Subjects Research Committee
granted approval for this study on May 29, 2003. The study is identified by
Protocol # 971. All names are pseudonyms.
29


CHAPTER 3
FINDINGS
Explanatory Models
Interviewees were asked a broad question to open up the interview;
In your own words, tell me about your diabetes. As probes, questions
suggested by Kleinman (1980) were utilized to elicit the individuals personal
explanatory model about diabetes. The following are responses and
statements related to the five central orientations of explanatory models,
etiology, pathophysiology, time and mode of onset of symptoms, course of
sickness (as in degree and type) and treatment (Kleinman 1980).
Defining Diabetes
In identifying the disease, interviewees used the terms, diabetes,
azucar and borderline to name their illness. Primarily English speaking
interviewees used the term Diabetes. Interviewees who were primarily
Spanish speaking used the term Azucar. When speaking of Azucar,
interviewees referred specifically to the amount of sugar in the blood as
measured by their blood sugar tester.
30


Like, the sugar (azucar) is ok in the day time and then at night
it goes higher.
For the interviewees who call their disease azucar, everything about
the disease is related to sugar levels as evidenced by one man who
describes how emotions are related to sugar levels;
That the people who have the sugar (azucar) arent very
good (health) and that the people that have it get nervous
and then the sugar goes higher.
For another interviewee, when asked what causes the azucar she
responded with the situations that cause the actual sugar levels to go high
or low.
Huh [what causes it? Well, when its low I feel sleepy, I
want to sleep, really sleepy. And if its high, I get real
shaky. Do you know what is shaky?] (Sabes que es
temblor?).
The term Borderline was used by interviewees to identify what type
of diabetes they were diagnosed with. At the same time, a number of
interviewees cited health professionals who told them that the concept of
being borderline is a fallacy. Either an individual has diabetes or they do
not. Ultimately, this caused some confusion for the interviewees. Those
who used the term borderline acknowledged the status as being at risk for
diabetes but not actually having it.
31


But you know, other families... other members of the family
that are borderline, it's just a hereditary thing.
I mean, they had told me that I was kind of borderline
diabetic and I kind of, and if I didnt watch my weight that...
I could become a diabetic.
I remember when I was going to the doctor and I dont
remember how I felt and I brought it up and he said, I think
you probably borderline diabetic and then he checked me
again the next time that I came and he finally said that Im
diabetic.
Having borderline diabetes was also not seen as a medication
needed status or a sign that the individual necessarily needed to make
behavior changes. This set of beliefs could be related to the belief that
borderline diabetes is not actually diabetes.
Well they say Im borderline but Im still taking medication
for it.
Just told me I was borderline and could go either way but to
just take the medication and I should be fine... so thats
what I been doing, what he told me. But I still eat sweets
and drink alcohol but Ive cut down a lot.
They say theres a line right here and you have one foot
on one side and another foot on the other side so, thats
considered borderline... well, once you pass a certain
number youre diabetic, if youre under youre not but not at
that point.
For one man who was diagnosed as having borderline diabetes, he
wonders if those health practitioners still making these diagnoses are of an
32


older generation of doctors because he recently heard at a health fair that
there is no such thing as borderline.
Borderline, but uh ... but I think its the older doctors. ...
So 1 went to the hospital and they gave me all kinds of
medications and they checked me and said thats kind of
high so... after that they put me on medication but they
told me Im borderline.... But today they told us theres no
such thing as borderline, either you have it or you dont. I
know but you know what the doctor told me.
Etiology
Interviewees had a great deal of information to relay about what
causes diabetes. Among the primary causes cited for diabetes,
interviewees mentioned that stress or confounding illness, being overweight
(which had association to poor diet and low levels of physical activity), and
being female, and to formal biomedical concepts.
Biomedical. When asked about the cause of diabetes, most of the
interviewees were able to refer to specific biomedical descriptions of
diabetes.
Has to do with the pancreas: when it doesnt function you
become a diabetic.
I just know that your pancreas doesnt produce enough
sugar to keep you going. To which her husband turns to
me and asks, Is she right?
33


Well, the pancreas produces insulin for everybody and
when your pancreas isnt functioning is when you become
a diabetic.... cause it controls all your sugars in your blood
and once your pancreas isnt working you will become a
diabetic.
They say that if babies are born big they get diabetes; well I
only weighted 6 lbs. 4 ounces.
One interviewee had a hard time reconciling all she has heard about
the causation of diabetes with her own understanding of the human body.
She places the blame on the medical community saying Doctors dont know
what to blame.
So I think that they really dont know, or theyre not
studying enough about it and theyre just... its just a
guessing game. Because theyre blaming it on if kids are
fed too early, if babies are bom too big, its hereditary, well
come on, gimmie an answer that makes sense...
Similarly, another interviewee questions what he is told by the
medical community.
thats what they
said... yeah, but is that what they tell me the truth. Why do
they become diabetic... so, exactly why you get the
diabetes... they dont tell me thats why you get it.
Stress. Stress from various sources was the most mentioned cause
for diabetes. Often the stress related to family issues and, apart from
causation, consistent stress can further complicate diabetes symptoms.
34


Enoja mucho [shes often angry or stressed out] that
causes it to go high.
Yeah, cause I would get so tired and I kept on going and
going. Cooking and everything. It seem to me that thats
when it started cause I work a lot.
Well I think it develops a lot, the stress from a lifetime; Ive
had a lot of things that have happened in my life, the last
35, 37 years.
Diabetes is not from sweets stress is where it comes
from.
Sometimes my mom gets me a little stressed and its just
like that, just bothering and every time Im eating she has to
go to the bathroom and I have to take her and I get mad
sometimes. And probably that too, I dont know. Im gonna
try to calm down more, I dont know...
Other Illness. Interviewees made causal, associations between
illness and experiences at the time of their diagnosis. A couple of
interviewees made mention of other illnesses they were experiencing at the
time of their diabetes diagnosis and hypothesized that they had something
to do with each other.
(High blood pressure and diabetes) I guess they crossed
each other and they didnt know what was wrong with me.
Sometimes if you get depressed... yeah... drink too much
yourself. Thats what it is, depressed. And getting
depressed, how I was.
35


In this interviewees case, she believes stress, the accumulation of
illnesses and physical experiences manifest in something, for her it was
diabetes.
I think its got too much... it puts too much pressure on all
your body insides and somethings gotta give. You know, I
think diabetes is one of it, and now Ive got congestive
heart failure.
Diet. Diet and poor food choices were identified as another cause of
diabetes. Sweets were also implicated as contributing factors to developing
diabetes particularly in their overindulgence.
Diet and overweight are the cause.
Its kind of hard and then if you dont have it, you could care
less. Most people could care less, they eat anything and
everything. Thats why people get sick.
I says, you gotta watch it, and her husband had high
cholesterol, about 500 about six months ago and the other
day I saw him at the store buying big candy bars and pop.
Well, they can do whatever they want. ... cause they dont
understand.
[Just that its a bad disease. When my sister-in-law had
diabetes, she used to manage a little store and when she
died in her house they found a bunch of bottles of soda.]
Yeah. Eat a lot of
fatty food and you dont know what you eat...
I dont think my mom will become diabetic, she hardly eats
anything.
36


Oh, yeah, you always have to have that in your mind (food
choices). I do. You know, I know with working and stuff we
never have such a healthy diet, youre always having to run
out and get something or something, but as far as
cooking... I dont know its always in your mind. And then
Im not a sweet... Im not a sweet person. But I know that
does not contribute to a diabetic as far as becoming a
diabetic, I mean I know that, but in the long run I guess if I
do get it itll be a plus.
Weight. The effect of being overweight was also tied as a cause for
levels. One interviewee stated that, either as a community, culture or family,
it is probably the way we eat. The following are what other interviewees
said about being this aspect of diabetes causation.
I think a lot of its just my overweight... overweight and urn,
probably just the way we eat.
But she likes that sweets and shes big... I went with her, I
went to get some of those, what do you call those...rose
hips... yeah and eee shes so heavy she couldnt even
cross the fence. She had to crawl and I jumped the fence
real easy because Im very light but my legs dont hurt
cause I exercise them a lot. And she said, eee how light,
you really can really go fast...
I think it... my weight I think... yeah cause the doctor told me
that.
Not enough exercise.
I think its because of the weight though.
I dont know, I just think, like I said, maybe my weight.
37


But like I say, I didnt used to watch my diet, I was heavy. I
was heavy then and maybe that did it too, the overweight...
so I was... Im too small and I used to weigh 160.
Genetics/Hereditv. A cause for diabetes was also said by a number
of interviewees to have a genetic or hereditary aspect. When heredity was
mentioned it was in association with other family members. This was
sometimes regarded as separate from genetic, which had more to do with
their culture and ancestry.
Sometimes they say, the doctor said, for think too much in
your mind that something happened in your family, thats
what I tell them, that all part is from your family too, related
from your family.
My sister found out like, about a year and a half before I did
that she was diabetic. So, and it runs in our family so it
wasnt really (a surprise).
Well she says, and theres a lot of information where they
say, from your family and then being Hispanic and probably
being overweight.
Yeah it does. Well not just my mom, but I got uncles, I got
another brother... yeah you
know, other families... other members of the family that are
borderline. Its just a hereditary thing.
Being Female. A group of participants, primarily the husbands
interviewed, believed or currently believe diabetes affects women only. One
husband believed, for quite some time, that only women were afflicted with
38


diabetes until he started going with his wife to her doctor appointments and
he learned it also affected men. Another husband still believes diabetes
occurs only in women and it is passed on by the mother.
[I dont know, just that its hereditary from the mother. Her
mom has it and the stroke and high blood pressure and the
sickness in the head.]
Time and Mode of Onset
Interestingly, the actual onset of diabetes was tied very personally to
the interviewees life at the time of diagnosis. A number of interviewees
remarked about a stressful time or event right around the time of diagnosis
and made the connection that their emotional/physical state associated with
stress were direct causes of why diabetes started when it did.
So I dont know, I had a lot of stress that summer and 10
hr. days at work and a lot of things were happening and I
dont know if that brought it on or what brought it on. I think
stress brings it on, thats how I think.
I believe mine came from stress cause I had too many
years of stress.
Like I say, and then the stress with my ex, he was a heavy
drinker, he wouldnt come home for days and days you
know. So I used to go to work like, really tired.
And its been a stress filled life, I went through two
divorces, raised two kids by myself and uh, you know, no
child support, no nothing. So end result of that, I think when
39


you live with a life of stress, it surfaces like that. ... I think
its got too much... it puts too much pressure on all your
body insides and somethings gotta give.
Eating too many sweets was also seen as why diabetes emerges,
though to a lesser extent.
Well* maybe it was poor eating habits before I was sick,
because I used to eat anything and everything then. ... I
started feeling like I wanted to eat sweets. I even used to
stop in the restaurants when I was going to work and I used
to ask for chocolate, the sweets. Before I never did crave
sweets and thats when I was getting it.
One interviewee compared diabetes with cancer saying, It chooses
when to emerge.
Pathophysiology
Interviewees had a great deal of biomedical information to convey on
how they believed diabetes works. That formal information however,
included a number of personal experiences and personal ideas about
diabetes. Many interviewees called attention to the fact that diabetes has
something to do with the pancreas and something to do with insulin and
sugar levels.
It has to do with the pancreas.
I guess about the sugar and insulin. You dont produce
enough insulin.
40


Has to do with the pancreas: when it doesnt function you
become diabetic.
Um well, I dont know, the diabetes comes from... I dont
know... the pancreas I guess. It doesnt produce enough
insulin?
Yeah, some people have a right pancreas and some
people dont.
And thats what he said, the doctor, and sometimes... what
did he say... if you eat... if your body dont, dont work like
its supposed to. Your pancre... pancreas? Yeah, working
like older people.
Everybody produces insulin, you do, they do, everybody
does, the pancreas is a hormone, kind of like your ovaries,
you know, what the ovary produces so you get that egg, so
you can get your period. Well, the pancreas produces
insulin for everybody and when your pancreas isnt
functioning is when you become a diabetic....
An interviewee stated that diabetes affects your kidneys but it will
spread to other parts of the body.
Maybe like it affects your kidneys? Part of your kidneys, the
diabetes. Oh yeah, it affects your kidneys and it affects all
your organs.
Another participant explained how diabetes works in terms of their
experienced symptoms of it. Because she has experienced dizziness as a
symptom of diabetes she and her husband believe diabetes affects the
41


brain. The location of the symptom translates into personal belief that that is
where the disease/illness is also localized.
[She thinks that its the blood,] the brain doesnt... [Maybe
its the blood but I dont know. Its the blood in the head
that...? I think its the blood that makes my head feel that
way, could it be the blood?] <[The blood in the head?]> [I
think its the blood that makes me like... (disoriented/dizzy).
It makes me like this, in the head...]
[No not a pain... I dont shake but I feel something in my
head* inside, but I cant explain what it is] [I think that the
diabetes affects the brain thats why she gets] kind of dizzy.
Severity and Duration
For the most part, participants have prepared themselves for having
diabetes for the rest of their life. They remark on the importance of
accepting this reality and they say that once that step is made then they can
begin to go on with life. While they are concerned about the serious
complications known to occur with diabetes, they are prepared for the
potential problems in day to day life with the disease.
Sometimes it goes away or you do something to try to
forget it. You live with it; you learn to live with it. (Talking
about the pain in his joints/headaches)
Like I say, your vision is getting worse, I can feel my body
my nerves are... and like I said the pain all the time,
different parts of my body. At noon when we were sitting at
the senior citizen, I had such a pain in my hip, coming
42


down. I just stayed there and we talked and then finally...
like I say you finally learn to live with everything.
You just have to learn to accept it. I can taste it but cant
have a piece like everybody else. Like I make a lot of candy
for Christmas but I end up giving it away because I know I
cant eat it.
But, you know, once you accept it, its ok cause you can live
with it. Its not hard to control if you really want to control it. I
dont have a hard time with it.
You know, but like I said, once you accept it thats the most
important thing cause then you can go on and you can
take care of it.
I think just accepting it is the most important thing. Like
with, if you need glasses, theres people who just wont
wear glasses because they hate them, but its either that or
go blind. So diabetes is almost the same thing, you know,
its a do or die situation. You cant live without insulin, you
cant live without those pills. You just accept it and go on.
Fears
One family member, who has diabetes, worries that he will continue
to get sicker and that it will begin to affect his ability to work. He would like
to see if he qualifies for disability assistance like his daughter. He worries
primarily about his toes and wonders if dry skin when he walks too much or
sweaty feet when it's hot are symptoms of his diabetes. He is also
concerned about the difficult choices he is forced to make between spending
43


much of his money on prescriptions and paying bills. He is frustrated by the
cyclical nature of what he sees as working just to pay for prescriptions. His
medical bills account for as much as $100.00 a month and when money is
already an issue, he is worried about getting more sick down the road and
how that will affect his ability to work and live.
Others are concerned about potential complications from their
diabetes. They have heard about other peoples experiences and
complications in their family or community and are concerned about
experiencing them themselves.
I guess I learned this from the very beginning, how to take
care of my body, how to keep it clean... especially my feet,
cause everybody has problems with their feet. And uh,
thank the lord I never had anything wrong with my feet. I
seen other people, they have to cut their toes and
everything. I take care of my feet. Thats usually what
everybody looks for, the feet.
Ive never gone to the hospital and I never had a
convulsion, so that usually what everybody gets,
convulsions.
Because so many of the participants believe they will have diabetes for
the rest of their life, they believe they will die because of diabetes.
Well it kills you little by little... if you dont take care, well,
its bad...and its bad on your heart and the organs... I think
its bad on all of the body... its in the blood but it affects ail
of the body.
44


A number of people expressed concern about the prevalence of
diabetes in the area.
But I dont understand why so many, so many people
cause I know of a lot of people in this area who have
diabetes. Anybody you talk to anymore has diabetes.
Well you start to ask yourself, is it really diabetes could it
have been something else. Could it be something else and
theyve diagnosed it as diabetes? I dont know, you know
but its there for you to question it. Especially when so
many people would have it.
But, you know, how can a place like this, I mean the
population isnt that great and the number of diabetics in
this community is very high. I mean, we always drank water
off a ditch and now we drink water off... well my brother
had a private well out here, but you know, you keep on
asking yourself what is going on, you know, what is
happening. Just like they had, well it was in the Rocky
Mountain news too, about how many women are getting
cancer here in the Valley. Theyre doing ... the cancer
research too. In fact one family in the Valley I think it is,
from up above, why do I want to say four girls. I think the
mother and four girls all died of cancer in one family. You
know, theres gotta be something going on cause we got
clean environment here. Its not like in the city where you
breathe all that smog and crap everyday you know, its out
in the open here its better living. But why is everybody
getting cancer and why is everybody diagnosed with
diabetes in this area.
So that was... and living here in the Valley its like an
epidemic, well its an epidemic all over thats why I cannot
understand why they have not worked on a cure.
45


A lot of people from here die from diabetes... complications
or... just that.
Chief Problems Caused
Physical symptoms and complications were among the chief
problems caused by diabetes for the interviewees. Symptoms ranged from
dizziness, sweats, and shakes to weakness. Complications included
difficulties in bearing children as well as numbness in the feet and affected
vision.
[I feel dizzy and shaky].
Well, you get dizzy, you get a headache.
What happens when it goes high? She sweats when its
high.... How does it feel when its high? temblosa (shaky)
And I get real worried when I start shaking, when I can feel
it. I feel like Im gonna pass out. I feel more safe when I
know my sugars are high because I know I can walk and
you know... Drink a lot of water, or exercise so itll bring
you down.
Maybe if the blood sugar is too high it takes longer to
heal.
Yeah. But I dont get up, I sit on my bed. I always have
something by my bed so that I can snack on... Because I
get sweats or I get dizzy and I cant get up. So, especially if
Im sleeping I just sit up. I already know whats going on in
my body, I already know my body. Its been so long now.
46


Well, really, your life is really a completely total different-
like, yeah. Its not the same anymore. You know, youre
getting older, youre getting weaker, youre getting tired,
youre fed up with it.
[I tell her not to do too much because it can be hard for the
eyes] [Yes, because the sugar affects the vision] A: [My
vision is not really that good]
Oh yeah, I think so. Depression, theres a lot of
depression. But you just gotta get the phone and talk to
somebody or do something, not cleaning though. But like I
say, your life is not the same anymore; it changes
everyday, just totally. Like I say, theres moods, theres
depression. Sometimes you feel so good and theres
times...
[I forget a lot of things. Thats because Im sick. Thats the
hardest part to be sick]... [I feel good and start crocheting
and then I start feeling bad and I go and lay down. I have
to lay down for a while until its over, until its better
because I dont feel good.
[Almost all the time. Most of the time I feel shaky] B:
[Especially in the morning and afternoon]
As a diabetic and at first they would tell me, you cant have
kids, you cant have kids, youre a diabetic. And you know,
theres a lot of complications when youre a diabetic and
youre gonna have kids, and they gave me the run down.
You can lose your life while giving birth, or the kids or both
and Im like, well I guess I chanced it. And I chanced it at
the right time when I had a good obstetritionist. So, so I
figure, well, youse are a gift from god. The first one that I
had, that I was going to have... the first one I had I
miscarried a month and a day before, I mean a year and a
day before them, they were born.
47


T reatment
Suggestions for more intimate and personal relationships with doctors
were among some of the suggestions for improved treatment. The majority
of the interviewees are reconciled to the fact that they will likely have
diabetes for the rest of their life and what they would most like now, in terms
of the care they receive, is better communication, trust and patience with
practitioners.
The only thing is I dont like to have to travel from here to
Alamosa to go see a doctor when I got a doctor right here.
A doctor thats supposed to know what hes talking about.
Especially since when they say hes one of the foremost
doctors in the Valley, down here right now.
Before, doctors knew you and your family. Now the main
concern is about money before the tests are done.
Interviewees personal explanatory models of NIDDM are only part of
the picture. While it is important to know and begin to understand what
individuals believe about diabetes, its cause, how it works, how it affects
them, it is also important to begin to understand where these concepts and
perceptions come from. Are they influenced primarily by family or are there
much larger, perhaps macro-environmental variables which inform these
explanatory models? The following sections will analyze the influences
upon these explanatory models from an ecological perspective.
48


Ecological Model
Figure 3.1
Ecological Model Framework
An ecological model was used to help determine what factors were
identified as environmental influences on personal explanatory models and
subsequent diabetes care and management. Looking at environmental
influences requires looking closely at specific spheres of influence upon the
49


individual. At the core of our framework is the individual within the
psychobiologic core (Wetter et al. 2001). It is in this area that we find
individual physical characteristics and behavior as well as innate or
instinctual behavior. We move out from the individual core in steps of
influence by looking at factors of the family, the community, culture and
historical and larger micro-environmental influences such as, social,
economic and industrial. Since diabetes is a chronic condition managed in
most part by the individual, understanding explanatory models that guide the
process of self-management is essential (Alcozer 2000:785). Key to
understanding the individual is also allowing the family and community to be
understood both as a source of influence upon the individual as well as a
recipient of influence by larger arenas. Social/Economic/Industry related
influences appear to impact nearly all sectors encompassed within on a
daily basis, particularly the local community, family dynamics and the
individual. Due to the complexity and multiple ways in which levels interact,
looking at environmental influences is more easily operationalized when that
environment is broken down into stratifications such as these. Then their
impact on personal explanatory models of diabetes, as reported by the
interviewees in this study can be examined (Richard et al. 1996). Figure 3.1
50


is a general framework of my ecological model. The layers of influence will
be discussed in terms of the data extracted from the interviews with primary
informants and their family members. Figure 3.2 is a general illustration of
the influential variables as identified by the interviewees. These variables
will be discussed in the following section in terms of their relevance to the
individuals personal explanatory model. A highlighted example will illustrate
how each particular level influences EMs. The example will be followed by
a more detailed discussion of this and other factors.
51


to
Figure 3.2
Influences Upon EMs
V Exercise Social / Economic /
Community r Industry related
Cultural/Historical


Figure 3.3
Individual Level Influences
Individual Level Highlight
An example of the individual impact on personal explanatory models
can be seen in how interviewees described the impact of stress in their lives
on the experienced symptoms of diabetes. One interviewee was able to
identify very specific circumstances that she believed contributed directly to
53


the onset of her diabetes. Not only was stress implicated in the onset of
diabetes, it is also understood to be a cause of increasing sugar levels.
Well, one of my sons was gonna graduate and I was
cleaning the house a lot and everything and I think all the
hard work it seems like. Yeah, cause I would get so tired
and I kept going and going. Cooking and everything. It
seem to me that thats when it started cause I work a lot. I
had lots of stress with my ex, he was a heavy drinker and I
was all stressed out. And maybe that did it too.
Individual Level Discussion
On the individual level a number of dynamics are at play and what
appears to be a continuum of emotion and behavior among the interviewees
when it comes to beliefs and actions surrounding diabetes and diabetes
care/management. Diabetes in the explanatory model is understood to be a
life-long disease and many identified the most important aspect of initially
dealing with their diagnosis as being personal acceptance. The most
prominent influences on beliefs about causation and onset of diabetes were
stress and the existence or experience of another illness at the time of
diagnosis. For many of the women, they had witnessed and heard about
friends and family who have also been diagnosed with diabetes. Some of
their stories emphasized negative experiences which were the most
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prominent aspects associated with the disease and which the interviewees
associate with their initial feelings of fear and/or anger.
Most of the women interviewed have experienced an episode of very
high or very low blood sugar levels which led them toward a sense of
personal empowerment to discover ways in which they could improve their
condition and feel better on a more consistent basis, rather than feeling as
though their every action was at the mercy of this disease. This effort
exposed them to a knowledge base that positively informed their perceptions
about diabetes. Others however, felt that those experiences of low or high
blood sugar are part-and-parcel of having diabetes and their potential for
controlling the diseases expression is not fully realized.
What will be discussed further are the specific influences upon their
decisions. These influences, for most of the women, led to a change in
perception about the controllability of diabetes and the ideas about what
impacts their disease on a consistent basis and eventually, what control the
individual feels they have over those influences. For most of the
interviewees, control eventually was taken and they exerted a consistent
amount of it in their daily lives. This took the form of eliminating certain
behaviors such as baking sweets or cooking foods such as tortillas and
potatoes, foods they had always included in their diet and their familys diet.
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A couple of the interviewees knew what it would require to take control of their
diabetes but cited a number of family, economic and industry related
influences that inhibit their ability to do so. These will be discussed further in
their respective areas but on the individual level the behavior of these
interviewees seems to reinforce their notions of the unalterable nature of
diabetes.
Also referred to as the Psycho-Biological Core, the individual level is
the arena in which the individual is the influence as well as the entity
influenced. Personal decisions, emotions, thoughts, instinctive behavior and
physical processes are all a part of the core as are physical nature of the
body including its natural function and behavior. Identified characteristics and
phenomena of the core garnered from this particular study include the
following:
Loss of Control/Helplessness. Some emotional expressions of the
individual experience with diabetes were those of helplessness and loss of
control. A particular woman who does not have diabetes but who lives with
her sister who does, equates the experience of diabetes to that of cancer.
What is clear from her perspective is both the perceived and actual gravity of
having diabetes as well as the loss of control to the disease. She stated that
56


the disease chooses when to emerge, implying that diabetes is in control. A
few women remarked on the passive experience theyve had at the hands of
diabetes. A great deal of their discussion centered around initial emotions of
sadness, anger and confusion but they state they were better able to move on
once they accepted the fact that they had this disease. It also appears they
are steadfast in the knowledge that they will have the disease for the rest of
their life.
At first I got real emotional, theres lot of answers...
questions that I have that arent answered, you know, why
me, you know, why anybody. But you just learn to accept it
and go on. Theres nothing you can do about it.
You know, but its something you have to live with and
theres nothing you can do about it. Nobody gives it to you,
you know.
Im OK with it, you know, you just come to terms with it, you
just accept it. I think accepting it was harder than dealing
with it every day, you know.
I think the important thing is that, just accepting it.
But my life hasnt changed, I havent changed, I mean at first
it was hard accepting it, I thought, my God, Im gonna have
to deal with this for the rest of my entire life... but you know,
once you accept it, its OK, cause you can live with it.
It was scary, I was sad, I cried for a long time.
A couple of the women interviewed note they have had to simply
accept their diagnosis with diabetes. For those interviewees, acceptance of
57


the disease in their lives has taken on the additional view that they have to
accept the dramatic effects of occasionally experiencing moments of low or
high blood sugar. While they are able to talk about changing diet or
increasing physical activity as something they should do, they leave those
concepts in abstraction and continue to eat as they did before the diagnosis in
the belief that ultimately, they cannot change the path of this disease.
I should do more exercises but...
Well, I guess exercise so it (the sugar) will go down...
Mmm yeah, I drink diet pop, I mean theres times... like I
made a cake a while ago and I ate a piece of cake but just a
little piece, yeah Ive changed a lot of things, my eating
habits, I still gotta exercise but...
Exercise (and diet). Those are the only two things that you
have to... you know, keep at.
Well your diet, I guess. And the exercise, those are the two
best ones to do, you know.
One woman is convinced that she cannot physically tell a difference
after she eats a meal, such as fast food, that she knows should have an effect
on her diabetes. Unless she begins to experience the symptoms and
complications she has heard about with diabetes, she does not feel as though
her behavior is detrimental.
Well it's like I tell you, my mom tells me, stop eating so much
candy or stop drinking so much pop. And it's like with me, I
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can drink pop and I can drink candy, I mean eat candy, and
it's like it dont faze me. Im sure my sugar goes up but I
dont feel that it really hurts me. You know, that it affects
me, like the vision going blurry or something like that
because my sugars are high.
However, later in the interview she describes a situation that she
apparently has experienced a number of times in which she estimates the
amount of insulin to take based upon what she ate that day, a higher amount
if she has been snacking or eating something bad.
Theres times like at night, see this is where I am, in the
middle of uh, I get up or I go to bed and I take my shots
usually around that time. It's like, Im not regular on my diet
at all, snack all day and like I say I snack whatever. And Ill
take my shots at night and Ill pretty much figure, OK, what
did I eat today, OK so I calculate it for that and it's just my
guess. And urn, pretty much most of the time I dont get up
at night to go urinate and that means I got myself to the
perfect, you know, way of just taking the shot and getting to
bed and Im ok throughout the night. But if Ive
overestimated and Ive taken more of my insulin than Im
supposed to, 2, 3:00 in the morning, or an hour later
because Hemalog works so fast, I go in, or I get up in the
middle of the night. But Im lucky that Ive woken up from a
sleep where Im getting my sugars low, so, cause most
people wont wake up. So it's like you say, everybodys
different... yeah, well, I wake up very quickly because in my
head I hear my heart pound and it's like a hammering pound
and I wake up and I feel it and I can feel my heart pounding
so hard and it's my heart working so hard to get my sugar
under control or something. So I get up and Im having to
stagger to the kitchen and Im holding onto walls and stuff
because I dont want to fall and I get something sweet to eat,
candy or whatever. And the thing is, when Im so low like
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that, I dont chew... I dont feel myself chewing. I chew so
fast just in order for me to swallow it down.
Genetic Influence. Whether the conclusion is drawn from simple
familial observation or from information obtained through various sources, the
knowledge of a genetic aspect to diabetes is well acknowledged and
accepted. Because this influence is so entrenched on the individual level it is
worth discussing here, however, the manner in which it is discussed, the
genetic nature of diabetes will be primarily mentioned in the discussions of
Family and Culture/History. Most of the women and men interviewed
acknowledge that diabetes runs in the family, it is associated to various
sources including being Hispanic, being a woman and having a family
member also diagnosed. The genetic aspect of diabetes may also contribute
to certain assumptions of how the disease works; whether or not they are in
or out of control and whether or not they can ever live without the ups and
downs of diabetes.
Personal Empowerment. Some women have turned the diabetes
diagnosis into a source of empowerment and have exerted a great deal of
control over how the disease would affect their everyday existence. Along
these lines one woman remarked that help can only come from within.
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Ultimately, this appears to be the conclusion drawn by a number of the
women interviewed. After their diagnosis, they took a number of steps to
educate themselves and keep informed of the best ways to take care and
manage their diabetes. This was, however, often a decision made after a
negative experience with low or high blood sugar levels.
And one time at work I guess, I overworked, overworked I
guess, when my blood sugar, I was feeling really... on my
way home I was driving, I was dizzy. But finally I had to learn
and read and I used to go to the health stores and read
about diabetes and everything, I do good....
I was feeling a lot of reactions like real sick and then I says,
no, this is... I says well Im gonna start reading books and
going some places that they can help me, you know, talking
to people that know about this. So thats what I did.
A certain degree of self-efficacy to learn about diabetes and to put that
information into action was quite evident in many of the women. While
access to information may be limited many interviewees put forth a particular
effort to increase their knowledge about diabetes. The amount and kind of
information accessed determines to a large degree what they know and
understand about diabetes thereby influencing their own care and
management efforts.
Oh yeah, one of my aunts, my moms sisters, last year, it
hasnt even been a year that she found out she was a
diabetic also, she urn, but she educated herself too and
shes managing her diabetes too.
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I went through diabetic camp when I was 15 years of age at
Glacier View, Colorado, so I learned a lot about ketones and
all of that so...Thats where I learned how to, if you have a
lot of sugar in your urine, get a gallon of water or half a
gallon of water and drink it as fast as you can within one
minute or drink as much as you can in one minute and check
your ketone strips, bout... after your third urine and see how
much of it has gone out of your urine system.
Also as a form of empowerment, the choices made by many of the
women with diabetes who handle the primary domestic tasks such as cooking
and grocery shopping make their needs a priority and bring their husbands
down a road of greater nutrition and sugar free food options regardless of
their wants. As the primary cook, she is in charge and she takes charge.
This was discovered in contrast to a cultural phenomena labeled Marianismo
and will be discussed in more detail in the Cultural/Historical discussion, but
on the individual level it is important to note the self-efficacious nature of how
some of the women handled the demands of diabetes and how their changes
took effect within their household setting.
It is also important to note that attitudes of empowerment and evidence
of taking control were not universal among the interviewees. There were a
couple of women who, while being able to tell me what they have learned
about diabetes, they are not consistent with their care. They discussed the
difficulties they encountered with maintaining a special diet and increasing
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physical activities which include stress, family dynamics such as family size,
income and time management.
Gaining Control. Closely tied with comments about acceptance, by
many interviewees, are feelings that they must not allow diabetes to control or
dictate their lives. Diabetes is acknowledged to be a very serious disease, a
sentiment that is continually affirmed when they continue to get physical
reactions. For a number of the women interviewed, they refused to continue
to live reactionary lives to the poorly understood disease.
And I says, yes youre gonna be tired if you dont learn how
to eat, youre gonna be tired with your diabetes and then
your legs hurt. And I says, what a drag. So I just, at night,
its just what I do. (She shows me some exercises she does,
knee raises)
I try living as normal as I can, theres no other choice, I have
to.
But if you keep it in mind and say, well I wanna try and help
myself. Thats what I was doing when I started, I didnt know
how to take care of myself.
For most of the women interviewed, it made no difference, in the level
of diabetes care and management, where they lived, be it a large metropolitan
city, a smaller city or a small town like this particular town. The location of the
town, however, is important and specific remarks about the town and its
distance to and from other locations will be discussed later. Remarks such as
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these speak also to feelings of acceptance and coming to a resolve about the
fact that you have diabetes and now you have to take specific steps to care for
it. One woman had recently moved to the Valley from Denver and when
asked whether she thought it was different, living in Denver with diabetes or
living in the San Luis Valley with diabetes:
No, its no different. You take care of yourself over there,
you take care of yourself over here. It makes no difference.
Education was mentioned by a number of interviewees as a decisive
factor differentiating those who mange their diabetes well and those who do
not. Some interviewees mentioned their observation of individuals within the
community who are known to have diabetes but who dont manage it well.
Yeah, he has diabetes, problem is he didnt know it. He
thinks like... he can drink a lot of tequila. He thinks, you
know... Hes not educated on it at all, I dont think.
What diabetes do on peoples feet, taking care of
themselves, I mean thats, and I dont know if that comes
from a circulation problem or just the pressure points or what
it is, you know. Education, I think would kind of solve that.
Despite some of the difficulties in increasing levels of physical activity
or exercise into daily life mentioned by some interviewees, other interviewees,
however, have found their own personal ways to slowly incorporate
recommended activity into their daily routine.
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Your diet, and you should exercise too, little by little you
should start to exercise. Start off slow, go for five minutes
and add a minute every day or something like that so youre
going a little further. Thats where you want to go just a mile
every day for an hour of exercise.
And urn, walking, we do some walking, we started walking
now because, like I said, because of all the flies and stuff.
We started walking in the mornings and then around the
house...
Portion Control. Some interviewees also remarked that beyond
learning more about what one can and cannot eat when it comes to diabetes,
they also had to set personal limits with their portion sizes. The practice of
portion control was discussed in two extreme ways, either they did exercise a
certain degree of watching how much they ate, particularly if they could not
alter much of their diet content, or they did not exercise portion control and
often discussed this as something out of their control.
And you can eat some of it, you just have to limit, you have
to know what the portions of what you can eat. You know,
how much you can eat and thats hard... Sometimes you just
wanna serve what you can eat. (Beans, potatoes, tortillas)...
its real hard to cut back on those.
[If they watch those things theyll be OK. Watching the food
and dont eat so much].
Well, I have to be more careful on my eating even though
theres times that you dont but its there, its there that you
should. Yeah, thats always there and even though I dont
65


do it but its there that I have to do it or make sure I dont eat
that much, but thats the hardest part.
For one couple in which the wife was recently diagnosed with diabetes,
controlling portions was just not an option when it came to baked sweets. She
admits to having an extreme lack of control when it comes to this food type so
her solution was to eliminate the presence of baked goods completely, much
to the disappointment of her husband.
Oh, like all the pastas, and I dont really care for that... but
white breads, pastries, thats my sin, Yes, because I dont
have a limit. I see him (her husband), he gets something
and no, I dont want anymore, to taste or something. Not
me, I... I... until I see the bottom. Its really hard. And there
for a while I remember, some years ago I could very well see
a cookie and thats it, or half a cookie or a piece of cake. But
now, I dont even bake a cake anymore. Its too hard. And
you know what, candies, he has this box of candies there,
and Im fine. Unless it was like a snickers, but all these hard
candies, Im fine. But if its a good candy or pastries, thats
very hard. I dont even make tortillas anymore, cause its
hard. To which her husband remarked, I pray for cookies
but she doesnt make it!
One interviewee mentioned her lesson learned about portion control
after a trip to a restaurant during which she indulged in a plate of fries and
suffered consequences afterward with terrible physical pains. As a result of
this experience and after discussing it with her doctor she learned the benefit
in portion control and that she can have a little bit of what she likes but not a
whole plate.
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So we used to go on Fridays because I didnt cook on
Fridays, so lets go to Skippers and then one time I ate a
plate of French fries and, you know, it was so good. Next
day I felt so bad, God, awful reaction. So I called my doctor
and she says, youre doing something wrong, but your blood
sugar was good two days ago, what are you doing, what did
you eat? So l told her French fries, Oh, thats crazy. Get a
handful of fries and squeeze it like this, she says, the lard,
the grease will come down. Thats what you been doing you
ate all that, you know, dont eat them. If you eat French
fries, eat maybe 5, 6, thats about it.
Additionally, as a means of reducing the amount of tempting foods in
the home another interviewee still bakes occasionally, but gives away the food
so she remains untempted.
I dont bake as much. And if I do, I give it away, it can be
very tempting. Like I said, you cant teach an old dog new
tricks. Its hard. At first it was hard but its something that
you get used to, you know.
Another interviewee has found a regimen that works for her, she plans
out what she will eat for the day and measures out her portions with
measuring cups. She says,
This is what I measure my food. (She gets her measuring
tools) My measuring cup... and its enough.
On another side of the spectrum, one interviewee remarks on the
difficulty in controlling portions of food, packaged food or otherwise. She
believes overindulging in food has been the cause of her diabetes and the
cause of the high rates of diabetes that she has seen.
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You know, so we overindulge ourselves, is what I think it is
now a days. You dont eat in proportions. You eat as a one
thing and thats it. And I think thats whats got us and I think
thats why a lot of us are becoming more diabetic. The
servings have enlarged instead of decreased and you know,
if youre not used to eating in small portions and youre trying
to lose weight and get into a health fit and youre really
gonna go crazy.
Confounding Disease/lllness Experiences. A confounding issue for
many people with diabetes, including most of the women interviewed for this
project, is the fact that diabetes is not a solitary illness in their lives.
Interviewees state that it is accompanied by high blood pressure, heart
disease, high cholesterol, etc. A greater point to be discussed is the extent to
which these illnesses interact and what affect that has on the individual,
particularly in their ability to care for, manage and even tease out which
illness is causing which symptoms. Symptoms experienced primarily from
high blood pressure, or perhaps reactions to high blood pressure medication
could be confused for symptoms of diabetes, thereby informing
misconceptions of what diabetes is and what it does. Ailments or illnesses
experienced in addition to diabetes could also limit attempts at physical
activity. One interviewee remarked that her weight and edema have
worsened since her diabetes diagnosis. She added that most of her weight
gain has been water weight, which she has not been very successful in
68


getting down. Another interviewee was diagnosed with polio in 1954 which
left her paralyzed from the waist down. This physical impairment, needless to
say, inhibits, to a large degree, what kind of physical activity she is able to
achieve as well as how she is able to travel to Alamosa for groceries or
medical appointments.
An interviewee describes the various symptoms she feels on a regular
basis. Her understanding of the symptoms of diabetes, specifically, may be
clouded by the symptoms of other illnesses from which she suffers.
Yeah, oh yeah, pain, Im always in pain... different parts of
my body. My feet are always bothering me, theres joint
pains, theres a lot of joint pains. My headaches are not too
bad, not too, but Im always in pain. Its my hips or my
hands or from my knees on down, they bother me a lot. And
like I say, theres always something that Im always
complaining about... my joints or... and I think thats from
the diabetes, I think but Im not sure.
A family member described how her father, who was diagnosed with
diabetes, passed away. She states his diabetes was under control but he
died, instead, of the other complications, namely cancer. Another
interviewee was unable to distinguish between diabetes symptoms prior to
diagnosis because she had been feeling sick for a prolonged period of time
due to sleep apnea and other issues.
I had just went in for a blood test, you know, they were
checking my blood level for my oxygen stuff and I had been
69


feeling kind of sick, like, thirsty all the time and my sister, my
younger sister, shes a diabetic and she told me, you should
go get checked cause thats how I felt, you know, I said I
thought it was maybe it was just because I was sick to begin
with and I went and the nurse called me, I think it was on a
Saturday that she called me and said that my sugar was
445.
Apart from confounding symptoms of more than one illness how the
existence of more than one disease can affect how interviewees believed
they acquired diabetes. One interviewee remarks that after the birth of her
last son she had high blood pressure and subsequently was diagnosed with
diabetes. I guess they crossed each other
Impact of Stress. A final aspect of influence occurring at the individual
level is the experience of stress and how it is understood to affect the onset,
the duration and the general experience of diabetes. Stressful situations
were implicated in the onset of the disease in many interviews. While the
source of stress was generally familial, social or community related, and will
be discussed more in depth in their respective areas, a bit of discussion is
warranted on how stress influences an individual at their core level. For one
husband, stress levels and emotional levels have a profound effect on his
wifes sugar levels.
Enoja Mucho [Shes often angry or stressed out] and that
causes it to go high.
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Life experiences, specifically stressful periods, at the time of diagnosis
are often involved in their explanations of the onset of diabetes. One woman
was diagnosed in September and she remembers it being a stressful time
because she was trying to sell her home, Maybe that brings it on. Much of
the source of this type of stress was said to be family related and will be
discussed the following section, but the issue of personal stress and how it
may affect physical and emotional well being, of the women interviewed here,
is important to keep in mind at this psychobiologic core.
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Figure 3.4
Family Level Influences
Family Level Highlight
Family was often cited as a source of stress in the lives of many
interviewees. They discuss problematic issues with significant others and
family members that cause their sugar to go high. Apart from the connection
72


between family stress and diabetes symptoms, it was also said to be
responsible for the onset as well as the cause of diabetes in their lives.
Phenomena at the family level involve interactions and behaviors
within a family setting that impact individual psychology and behaviors,
specifically when it comes to the construction of personal explanatory models
of diabetes and subsequently how their behavior is believed to impact
diabetes. The importance of the family unit as a source and recipient of
information is critical to understanding how the individuals explanatory model
is both formed and informed. According to Kleinman, The study of patient
and family EMs tells us how they make sense of given episodes of illness,
and how they choose to evaluate particular treatments. (Kleinman 1980) It is
this concept that drove the studys interview focus on both women with
diabetes and a family member. All women interviewed had had an
experience with diabetes, either with parents, children or other family
members prior to being diagnosed themselves. Consequently, much of what
is learned is a result of their shared experience with their family member or
shared stories about experiences, both positive and negative. There are two
sets of arrows relevant in the above figure for the discussion of family
influence. It is not a single direction of influence from the family upon the
individual, the family also acts as an influential force in the community as well.
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Families are not static entities nor are they solitary, and in this small
community the boundary between the family and community influences is
quite fluid; indeed, it is quite common for family units and households to
interact with others in the community on a consistent basis. The close
interaction between individual and family and further, between various
families, on a consistent basis allows for greater impact of influences.
Family Level Discussion
Family influence is a truly dynamic and critical aspect of understanding
the sources of individual belief and behavior because of the nature of shared
environment. Family dietary preferences, the ability to provide for various
family members are among the issues that individuals, particularly heads of
household, have to deal with. The family environment is where the individual
spends most of their time and interaction. As a result, much of the
information that the family receives from various resources is cycled through
family members. Patient and family EMs often do not possess single
referents but represent semantic networks that loosely link a variety of
concepts and experiences (Kleinman 1980:106-107). Based upon this
concept family influences not only shed light upon the individuals
74


environment but also shed light on the actual beliefs and behaviors of the
family.
Support. Family members have been mentioned by interviewees as
sources of support and sources of stress, both of which they believe have an
affect on what they know about diabetes and further what they feel is
necessary for caring for it. A couple of the family members who have
diabetes in addition to the female head of household promote certain
behaviors that are beneficial for good diabetes care, particularly behaviors
associated with diet and cooking practices. They mentioned that since other
family members who live in their household have diabetes they have to learn
to cook better for everyone and this is acknowledged to be an advantage.
I think probably just having to cook for my mother and my
brother now that theyre diabetic... that helps. I think it helps
more that Im around my mom and my brother that I have to
cook for them now that theyre diabetic cause when Im at
home by myself I just snack on whatever I find and I dont, I
dont sit down and make a meal, which is best for diabetics.
Ill just snack on whatever I find when Im at home so I know
that doesnt help me with my diabetes.
Well, when I met my husband he was already a diabetic so I
had to learn to cook and to, you know, as a diabetic. So, but
urn, being around my mom, before she was a diabetic, wed
be able to cook all these things that diabetics cant eat. But
now that shes a diabetic and my brothers a diabetic, its
much easier to be able to cook...
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Assistance from family was mentioned in explicit diabetes
management. One interviewee mentioned the casual attitude about diabetes
management her father had and that she often checked his blood sugar level
for him. Yeah, he doesnt check it as often as he should either. But once in
a while I check him and Ill have him see if hes normal.
Another couple discussed experiences theyve had where the wife has
had a diabetic reaction from high sugar. Her husband detailed what he does
to assist her. He often guided the general interview and knew every
prescription his wife was on, her supply regimen and her diet and physical
activity behaviors. He described how he gets her orange juice when her
sugar is low and how he wont let her get up and go outside right after her
episode because shes been sweating and he does not want her to get
pneumonia. [Her body is still a bit warm and with the sweat, I want her to be
dry]. The two are clearly a team when it comes to her diabetes
management and spoke in terms of we when mentioning care regimens.
[This is for the night, in the night we check the blood is not high].
Family support was also mentioned in the ability to have shared
experiences with other family members with diabetes issues. Family
members who experienced both positive and negative situations with
diabetes care and management shared this information with others. The
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mere fact that another person was able to share and understand the
experience of dealing with diabetes, its complications and learned
experiences, serves as a source of support for interviewees. Basically I have
family support cause like I said, my dads diabetic, my sister... Multiple
family members living in the same household presents a dynamic
environment because shared experiences and behaviors are also at play.
Family Influence on Behavior. Along the line of explicit familial
influence is the experience of one woman whose father suffered and
ultimately died as a result of diabetes complications. The lessons learned
from his management, or in his case, mismanagement of his diabetes were
clear to his daughter early on. She remarks that she attributes her attitudes
about diabetes to what she saw in her fathers struggle with the disease. She
states: And I think, me not having the role model as a child made it harder for
me. She states that the influence of her father has increased her desire to
be a better influence on her own children because she sees characteristics
she identifies as precursors of diabetes in her two children. The reason is
that my sons constantly urinating and weve taken him into the doctor and
{She} is their pediatrician and said just because of me being diabetic, you
have to watch out for them because they can inherit it. But so far, no. The
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steps she has taken to help this situation include switching her son from
Mountain Dew to diet Mountain Dew as well as diluting his Nesquick
chocolate milk drink with more milk than chocolate powder.
I still constantly worry so Ive started him on diet Mountain
Dew, he loves that mountain dew, his favorite color is green
so diet Mountain Dew. So that kind of helps out. But he
loves his chocolate milk and he loves the Nestle Quick so
thats what I get him. And thats what I kind of worry about
too because at school he can drink the regular milk and hes
fine with it but at home hes gotta have the chocolate milk
and its like, I make it as light as I possibly can...
Her intentions, however, are not reflected in her behavior and like the
negative influence her father had on how she cares for and manages her
diabetes will likely be mirrored in her children. She struggles with resisting
her favorite foods, including chips, pasta and pizza and mentions the desire
her own children have for the same types of foods.
But this one, (her son), Im afraid, because hes got what do
you call it, he loves raviolis, he loves pastas, he loves
candies, he loves those fruit... Tom and Jerrys and stuff like
that, fruit little pouches and thats what he loves and thats
what I try to hide away. If he sees them hes like, I want one
of those! And gone in two days. So its like, geez, but I try to
keep them away from candy as much as I can, even those
fruit snacks. But if he sees what he wants and he doesnt
get it he throws his little fit too.
Based on the further remarks about her and her familys dietary
choices, I did get the sense that this struggle occurred often. This interviewee
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feels that because she has been dealing with diabetes since she was a
teenager, she has learned various tricks of the trade to compensate for her
food choices, some of which she has learned from her father who also had
diabetes and who experienced some of the more grave complications of the
disease including amputation of both legs. She confronts this chain reaction
in a statement where she says she wants to be a better role model for his kids
and unlike her father who passed away when she was a teenager, she wants
to be around to see them grow into adults.
Thats my one thing. You know, Ive always wanted my
babies, and Im fortunate that I had my dad until I was, what,
24 and then I had my kids at 25, so at least I got to spend
my time with my dad. Some of the time I wish I still had him
now but, thats what I need to consider, thats where I need
to go ahead and get my life on track and start doing... I need
to lose weight thats for sure, Ive always been a big kid. But,
its hard, I dont want my babies to be without a mama.
Family Assistance. Family assistance was mentioned, specifically with
regard to running errands, making trips to Alamosa for prescriptions or
groceries, etc. For some of the older women I spoke to, receiving assistance
from children has helped tremendously. The factor that comes most into play
when living in town, for the interviewees, was the fact that they have to travel
at least 45 minutes to the grocery store, pharmacy or shopping center.
Family members who are younger, who work in Alamosa or who make trips
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more often are able to assist their parents in picking up things they need or
running errands for them.
Ill bring mom whatever she needs from Alamosa cause I go
to Alamosa once a week also, so that has kind of helped,
you know.
And I take my mom to Alamosa, whats the name of the
place where you do the computer? Oh, Sierra Blanca.
A different form of family assistance comes from the perspective of
husbands, whose wife is diabetic, particularly those women who have made a
number of changes to their personal diet and behavior. The husbands
remark how much better they are eating because of the changed diet of their
wives.
[She tells me what to eat. Before I liked to eat everything,
chicharrones. Yeah, now its better that she tells me.]
Stress. Family, however, was also implicated as a source of stress
which was believed to make the sugar go high. In addition, family stress was
viewed as a contributing factor in the onset of their diabetes.
[Things that make it rise are things that make me nervous,
like the family. Like now, I have a daughter and two sons,
my daughter lives in Denver and shes gonna go over here
and Im nervous for her because shes going to leave
Denver, I think the first or second of next month. Im
nervous... Im happy because shes going to stay here
because Ill see her more often but Id rather not bother
people.]
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Like I say, and then the stress with my ex.
Having two kids, same age, and doing the same thing and
going to school full time and this and that and like, you heard
us talking about [Joe] with me and my husband... we just,
always at each others throat and that always has my
stress... and stress brings your sugar up. No matter what.
This interviewee also mentioned the fact that in addition to caring for
the two children, she is also brings in the majority of the familys income
which adds significant stress to her life.
So thats what... and its like I tell my mom, my husband was
on unemployment, hes an alcoholic, what does he spend his
unemployment check on... I pay the car, I pay the car
insurance, I pay the rent, I pay the light, I pay the phone, I
pay everything. Ive got no... I dont have a backbone to fall
on. And so hes always ticked off because I dont do this, I
dont do that, Im always with my mom, this and that. Its
like, hey, if youre gonna be home telling me this and that, Id
rather be with mom, you know. So thats why I say stress
has a lot to do with my sugar being up too.
Another interviewee cares for her elderly mom and associates the
frustration and stress she occasionally feels with caring for her with her sugar
levels.
Because sometimes I been getting mad and that makes my
sugar go up. Sometimes my mom gets me a little stressed
and its just like that, just bothering and every time Im eating
she has to go to the bathroom and I have to take her and I
get mad sometimes. And probably that too, I dont know. Im
gonna try to calm down more, I dont know.
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She elaborates on the fact that her brother, who lives just down the
road, does not help her with their mom. And maybe thats whats causing me
that, cause I been watching myself really good. Maybe it's her, and then he
doesnt want to help me with her, he didnt want to help me anymore... Im the
one who has the load for everything, I have to... pills, doctors, diapers and
urn, I have to figure out everything, her bills. He doesnt do nothing, not even
go for her pills or anything.
Today has been a busy day too, we had company... yeah, it
gets me stressed out. Stress can cause your sugar to go
high too. Yeah it does.
[Its higher but after the day, in the night, she gets nervous,
or if something worries her, her sugar always goes high or if
people are over, it goes up.]
Family Size and Diet Interaction. Of all the families interviewed only
two consisted of small children and had a household size of at least four
individuals. Large family size in the house was noted to impact the ability to
cook healthfully and makes an issue of time management as well. Cooking
for kids or large family demanded quick meal preparation which was identified
in an example as frying a piece of meat as opposed to baking it, which
requires more time and preparation.
We fry everything. We dont broil. We dont bake as much.
And we go home, its faster to fry up a piece of meat than it
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is to put it in the oven. Wait two hours fora piece of meat in
the oven.
But still theres a lot of things that we still eat that were not
supposed to eat. Yeah its hard not to, you know,
especially when you have kids. All were doing is snacking.
And when youre cooking for more than just yourself that
makes it difficult for you to have your own, you know, diet.
Were a big family... theres six of us.
Diet was identified in every interview as a primary cause for diabetes
and yet the habits of the women with large families and the women with small
children did not reflect those same beliefs. This issue has a lot to do with
time management as well and not just the decision to eat food that can be
prepared quickly. While the women interviewed did identify improved diet as
a factor necessary for individuals with diabetes, whether or not they have the
time at the beginning or at the end of a working day to devote to planning
and/or preparing special meals speaks volumes. Most of the women make
mention of the time issue. It also appears evident that large amounts of time
must be made available to properly care about diet and activity behaviors
when dealing with diabetes for some of the interviewees.
And its... unless I play with my kids, but sometimes my kids
just want to sit there and play. Its not a, what I used to do
when Id come home from school, or when I was working at
the other job, cause I would work Monday thru Friday and
Id get them on their trikes, and Id get my shoes on and
wed take off for a walk and Id follow them or theyd follow
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me, one on one side and the other on the other and wed
take off for a walk but its hard, its hard to get exercise in
there. You know, theres not enough hours in the day.
When asked if she could think of anything that would help
she replied, Yeah, give up a couple of my jobs! That would
help me out, but financially that wouldnt.
I wish I had more time so I can, I love to walk, I love to ride
my bike, I just dont find the time when I get home from work.
Ive got my kids to deal with, or cause 1 was going to school
full time and Id have homework and I wouldnt be able to go
out and... and I wouldnt be able to go out and exercise and
this and that. And you figure, youre so tired you dont even
want to. So by the time you get around to doing something
you do it one or two days and its like, God, so you just like
give up and you wish there were an easier way of exercising
or, you know, getting your exercise in.
The issue of time management, as evidence from the preceeding
quotation, supercedes issues surrounding family and speaks more directly to
issues of social and economic circumstance. This issue will be further
explored in the discussion directed specifically as micro-environmental
influences. But, in regards to the influence by family matters, time
management is a concern particularly for these women who have to juggle a
number of responsibilities on top of dealing with a disease like diabetes.
Family as a Source of Information. In one interviewees case, her
initial exposure to diabetes was through her sisters diagnosis and when she
was ultimately diagnosed she referred back to the documents her sister
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received. Her access to education and informative materials came primarily
from her network of family members who also have diabetes. While she
obtained print materials from her sister she also received experiential
information from both her sister and her uncle. Their understandings,
experiences and views were relayed to this interviewee and have become a
part of her own personal understanding about diabetes. There is a trickle
down effect, as evidenced here, when it comes to diabetes information and
where it is accessed. In this interviewees case, formal information was
provided to her sister and her uncle by doctors and pamphlets or brochures
which they pass along to members of their family and perhaps other members
of their community.
Cause my sister was a diabetic, she had information too on
diabetes and I read through her pamphlets and stuff for all
the information. And then, my uncle was a diabetic and he
would just tell me what it was about and what the doctor
would tell him, stuff like that.
One family member, whose mother has diabetes, describes the
education efforts she helps her mother take. She states that the information
this source provides is taken to heart by her mother who considers the
recommendations seriously and further, the visits they make together serve
not only to educate her mother but also herself.
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They test her on the computer, she goes in there and in the
computer they have this program that they ask the questions
that she answers as far as her diet and stuff like that and the
computer will let her know where shes at, what she need to
do a little more of or less of and things like that. And its
really helped me to understand it cause I go with her, I take
her and stuff. What she needs to be doing and she does it.
You know. And pretty much, its really good as far as how to
take care of it. Like I told you, it tells her if shes not doing
good, what she needs to do, what shes doing good and stuff
like that.
One interviewee, because her daughter was diagnosed with Type I
diabetes, told me a great deal of information about potential causes of
diabetes but she after hearing of all the research being done on diabetes she
is still confused why they havent found a cure. She mentions the
recommendations of not over-feeding babies, of the correlation of baby
weight with development of diabetes and finds the direct application of these
findings difficult to apply to her life.
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Figure 3.5
Community Level Influences

Community Level Highlight
A fine example of the influence of the communitys ability to act as a
platform for information exchange coupled with community members
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personal experiences is the spread of the sugar level benefit of green beans.
It was remarkable how many separate individuals mentioned the food item as
being beneficial for their diabetes status. It was often cited as a personal
treatment effort and prevention tool for their diabetes.
Influences at the community level have included general issues
concerning the town including available food and supply resources, medical
facilities and the matter of necessary travel to Alamosa. Interviewees also
mention community social events and the vast web of communication and
information as factors influencing what they know about diabetes and how
they go about managing their illness. The community appears to act
primarily as a conduit of information about diabetes care and general beliefs
about the disease. An example of this flow of information was the consistent
mention of green beans as a beneficial food specifically for lowering blood
sugar levels occurred frequently during interviews. This was peculiar as no
other food item was mentioned with the same frequency. There may exist a
unique dynamic to small towns that generates the easy flow of information as
was seen in this circumstance. It is safe to say that when members of the
community share information, learned or experienced in social settings,
individuals become active recipients of that knowledge and it changes or adds
to already existing beliefs about diabetes.
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Influences of the family upon the individual do not, by any means,
provide us with an entirely clear picture of environmental influences. Hispanic
families interact with others in the community, generally as family units.
Family to family interaction as well as general community dynamics are
crucial for further understanding the influencing sources on the explanatory
models. Community related influences occur on a more broad level than the
family but at the same time, because of the location of the town, are also
somewhat localized to the town and its surrounding areas. While the majority
of the interviewees lived in town, some lived in the still smaller towns just to
the east of the main street. To the residents however, the boundaries of
towns mean very little. Travel between towns and even to towns a bit farther
away is a part of life and they consider the entire Valley to be a part of their
community.
Community Level Discussion
Economically the San Luis Valley is of a relatively low socio-economic
status as compared to the rest of the state of Colorado. The per capita
income in 2000 of the six counties which make up the San Luis Valley was
$15,180 which was 63.1% of the state per capita income (US Census 2000).
This affects a number of access issues for the residents including health care,
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and dietary options, among others. The majority of these issues will be
explored in the Social/Economic discussion; however, there are community
level influences that should be addressed because they were issues raised by
interviewees as important and influential in their beliefs and behavior.
Additionally, socio-economic status influences options available for obtaining
medical coverage. The older interviewees primarily obtained medical
coverage through Medicare and others from Medicaid. Other insurance
options limit where the individual and their family could be seen, how often,
etc. A more detailed discussion of economic issues will be presented in the
Social/Economic influences section but the fact that so many members of this
community have to tackle this issue it is worth mentioning.
Another reality of the town is that most of the people who work must
travel to do so. One interviewee states he has to travel 45 minutes to work
for an eight and a half to ten hour work day. How does this affect his
perceptions about diabetes? His care is often compromised because hes
often tired and after working does not consider management of his diabetes
to be the highest priority.
The town does not offer many fast food options. There is a pizza/sub
shop, a coffee shop and a couple of Mexican food restaurants. There are
also two small grocery and general supply stores which were not identified as
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a primary sources of needed things because of their cost and limited variety,
Cause we have this store here but it's so expensive, it's like 7-11These
stores are also identified as sources to help families get some things they
may need until their next trip to Alamosa. Like I said, the little stores are
here, but just to kind of carry you over, but it's something that weve always
done.
Community Social Events. Social events were referred to as visiting
family or friends or organized community social events. Gatherings with
friends and family in the community were acknowledged to pose some
difficulties for individuals with diabetes because of the food variety, usually
consisting of items they know are bad for their diabetes and its overwhelming
availability. In a discussion on what types of foods this interviewee has a
hard time cutting out of her diet, she made mention of sugary and
carbohydrate rich foods such as sweet things, pasta and potatoes. She also
pointed out that it is uniquely difficult at local gatherings, Especially when
were at a family gathering like at a barbeque, somebody will make like a fruit
salad but theres, like, cake and all that... difficult situations... but you just
gotta learn how to manage it and know what you can eat and how much.
There is also a senior center in town where meals and activities are planned
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