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Family caregiving of the patient with complex care needs doing what you gotta do

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Family caregiving of the patient with complex care needs doing what you gotta do
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Robinson, Katherine Morton
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viii, 157 leaves : ; 29 cm.

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Caregivers ( jstor )
Family members ( jstor )
Grounded theory method ( jstor )
Health care industry ( jstor )
Hospitals ( jstor )
Infants ( jstor )
Mothers ( jstor )
Nurses ( jstor )
Nursing ( jstor )
Social interaction ( jstor )
Caregivers ( mesh )
Department of Nursing thesis Ph.D ( mesh )
Dissertations, Academic -- College of Nursing -- UF ( mesh )
Family ( mesh )
Family Relations ( mesh )
Home Nursing ( mesh )
Long Term Care ( mesh )
Stress, Psychological ( mesh )
City of Indian Rocks Beach ( local )
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bibliography ( marcgt )
non-fiction ( marcgt )

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Thesis:
Thesis (Ph.D.)--University of Florida, 1999.
Bibliography:
Bibliography: leaves 142-156.
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Typescript.
General Note:
Vita.
Statement of Responsibility:
by Katherine Morton Robinson.

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FAMILY CAREGIVING OF THE PATIENT WITH COMPLEX CARE NEEDS
DOING WHAT YOU GOTTA DO
















By

KATHERINE MORTON ROBINSON


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

UNIVERSITY OF FLORIDA
1999






























Copyright 1999

by

Katherine Morton Robinson














ACKNOWLEDGMENTS

I would like to acknowledge many individuals for their support during the course

of this research. Doctoral study required me to sometimes shortchange my husband,

James, and my sons, John and Ben. I thank them for their loving support and their

vehement insistence that I complete this work. Without my mother-in-law, Mary Wheat,

we would have drowned in unwashed laundry and the remains of fast food meals. I

could not have accomplished this without her. My colleagues at the University of North

Florida College of Health, too numerous to mention by name, have been an unending

source of encouragement, as well as my dear friends, Mark Waters and Stuart Young.

Doctoral work is always completed under the watchful eye of a supervisory

committee. I thank mine for their unwavering support. I particularly thank Dr. Sally

Hutchinson for her gentle and persistent encouragement, and insistence on rigorous

scholarship.

This study was supported, in part, by the State University System (Florida)

Grants in Aid Program. The Lambda Rho Chapter at Large of Sigma Theta Tau

International, the International Honor Society for Nursing provided funding assistance

as well.

Lastly, I would like to acknowledge the unsung contributions of all the

caregivers who participated in this study. Without them, it would have had no meaning.













TABLE OF CONTENTS
page
ACKNOWLEDGMENTS .............................................. iii

ABSTRACT ......................................................... vii

CHAPTERS

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

Family Caregiving ............................................... 2
Who are the Caregivers? .................................... 3
Who are the Care Receivers? ................................. 4
Purpose of the Study ............................................. 6
Theoretical Framework for Grounded Theory Research ................. 7
Grounded Theory ................................................ 9
Significance for Nursing ......................................... 13

2 REVIEW OF THE LITERATURE ................................ 15

Family Caregiving .............................................. 15
What is Caregiving? ...................................... 16
What is the Work of Family Caregiving? ..................... 17
What is the Motivation of the Caregiver? ...................... 20
Positive Aspects of Caregiving ............................. 21
Negative Aspects of Caregiving............................. 24
Meeting the Needs of Family Caregivers............................ 31
What Needs have Caregivers Identified? ....................... 33
Strategies to Meet the Needs of Family Caregivers ............. 34
Summary ..................................................... 38

3 METHODOLOGY .............................................. 39

Research Approach ............................................. 39
Sample Selection ......................................... 39
Data Collection .......................................... 43
Data Analysis ............................................ 44
Coding ................................................. 44








Basic Social Process ...................................... 45
M emoing ............................................... 45
Data Management .............................................. 46
Maintaining Rigor .............................................. 46
Ethical Issues .................................................. 48
Summary ..................................................... 50

4 DOING WHAT YOU GOTTA DO ................................ 51

The Nature of Complex Care ...................................... 52
Doing What You Gotta Do ....................................... 53
How Do Family Members Become Complex Caregivers? ............... 54
Free or Forced Choice ........................................... 55
The Duty to Provide Care .................................. 55
Gender Influences on the Decision to Provide Care .............. 55
Spousal Duty to Provide Care .............................. 56
Filial Duty to Provide Care ................................. 57
Parental Duty to Provide Care .............................. 58
Pressure to Provide Care ................................... 59
Avoiding Nursing Home Placement, Keeping Promises ........... 59
Choosing to Provide Care ................................. 61
Paying the Price ................................................ 62
Summary ..................................................... 63

5 BECOMING A "LAY NURSE" .................................. 64

The Dramaturgical Metaphor ...................................... 66
Front and Back Stages ..................................... 67
The Setting ............................................. 67
The Props ............................................... 68
The Ensemble ............................................ 70
The Script ............................................... 72
Learning the Script .............................................. 73
Learning How to Provide Care ............................. 76
The Myth of Discharge Planning ............................ 77
Learning by Watching ..................................... 79
Learning by Trial and Error. ................................ 81
Doing Nurse's Work ............................................ 82
The Work of Complex Caregiving .......................... 83
Maintenance Work ....................................... 84
Prevention Work ......................................... 97
Social Structural Work ............ ........................... 102
Obtaining Supplies and Services ........................... 103








Fighting for Benefits .................................... 104
Embracing the Role of Lay Nurse ................................ 108
Finding Meaning and Significance ........................ 111
Role Distancing ......................................... 112
Becoming the Expert Nurse ............................... 114
Seeking New Information ................................. 115
Normalizing ............................................ 116
M odifying Care ......................................... 120
Evaluating Outcomes ..................................... 122
Finessing the System ..................................... 123
Partnering .............................................. 125
Summary .............................................. 126

6 RECOMMENDATIONS FOR THE FUTURE ...................... 127

Recommendations for Research.................................. 128
Recommendations for Practice .................................. 129
Recommendations for Policy ..................................... 131
Legislative Awareness .................................... 131
Pastoral Awareness ...................................... 132
Community Awareness ................................... 133
Sum m ary .................................................... 134

APPENDICES

A INTERVIEW QUESTIONS .................................... 135

B INFORMED CONSENT ........................................ 136

C IRB APPROVAL: THE UNIVERSITY OF FLORIDA ................ 140

D IRB APPROVAL: MEMORIAL HOSPITAL OF JACKSONVILLE...... 141

REFERENCES ..................................................... 142

BIOGRAPHICAL SKETCH ........................................... 157













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

FAMILY CAREGIVING OF THE PATIENT WITH COMPLEX CARE NEEDS
DOING WHAT YOU GOTTA DO

By

Katherine Morton Robinson

August 1999

Chairman: Sally A. Hutchinson
Major Department: Nursing

Researchers have conducted an abundance of family caregiving research since

the late 80s. Most studies focus on caregiving of the frail elderly or those with

Alzheimer's Disease; no research describes the experiences of family caregivers for

patients with complex medical needs in the home. In this grounded theory study, twelve

family caregivers, representing more than 60 years of caregiving experience,

participated in in-depth interviews. First-person accounts from the Internet (n=150)

contributed to the sample. The interview and Internet participants represented a wide

range of economic and educational backgrounds. The constant comparative method

guided data analysis. Although most family members perceived the decision to give

complex care as a voluntary one, powerful economic and social forces including filial

and spousal duty, gendered role expectations, and promise keeping to the care receiver,








influenced their assumption of the role. Therefore, the basic social problem faced by the

family caregivers was interpreted as "Doing What You Gotta Do." The decision to

provide complex care was a costly one. Family caregivers reported giving up jobs,

homes, savings, careers, lovers and spouses in order to provide care to their family

members. Caregivers performed many complex, highly skilled procedures using

complicated medical equipment. The basic social process caregivers used to address

their new caregiving role was becoming a lay nurse. As caregivers became confident in

their roles and attached meaning to the work of caregiving, they expanded their care

beyond the instrumental work itself. They acquired the language of nursing, sought to

understand the rationale for treatment and management, assessed the quality of their

care, and performed the rituals of nursing-- charting, vital signs, shift reports. The

process of becoming a "lay nurse" occurred in three phases-Learning the script, doing

nurse's work, and embracing the role. Caregivers who did not become "lay nurses"

distanced themselves from the role and derived neither meaning nor satisfaction from it.

This research describes how caregivers are placed in untenable positions with little or no

preparation or support. It is essential, for the health of both the caregivers and the care

recipients, that supportive structures and interventions be developed.














CHAPTER 1
INTRODUCTION

Most individuals who have not been prepared as professional caregivers would

probably find it difficult to imagine structuring their personal lives around the medical

needs of a loved one. Many among us would be reluctant to irrigate a gaping wound,

empty drains of purulent body fluids, instill saline into a catheter placed near the heart,

respond to and troubleshoot mechanical difficulties with medical equipment, assist in

intimate personal care, and provide nourishment, medications, fluids, comfort and

companionship for our spouses, parents, children or lovers. These tasks, and many

more, however, are performed daily by an ever increasing number of family caregivers.

Patients who require complex medical treatments used to be cared for in

hospitals and skilled nursing facilities. Now many of these patients are cared for at

home. The challenges facing family caregivers are both emotionally and physically

taxing. Caregivers must be ever present and ever competent. They must also continue to

meet the demands of their own lives, their jobs, and their other family members. The

family caregivers of patients requiring complex care have been largely unheard. This

study gives them a voice.










Family Caregiving

Family caregiving has probably existed since the beginning of time. The Book

of Tobit, a sacred writing revered by both Christians and Jews, cites the caregiving of

the blinded Tobit by his nephew and wife (Tobit 2:10-12, New American Bible). Paul,

in his New Testament letter to Timothy, counsels his followers to care for their aging

parents (Timothy, 5:4). In the United States, a family tradition of providing care for the

disabled elderly was in place during the late 19th century. Abel (1992) reviewed the

diaries of a reluctant family caregiver, Emily Hawley, clearly demonstrating the

expectation that family care would be provided no matter what the cost. For Hawley,

providing care ultimately resulted in the destruction of her relationship with her father,

and her total economic defeat. More recently, policy makers and third party payers place

increasing pressure on families to provide care at home and "preserve family ties"

(Brody 1981; Hooyman et al.1985). In an era where the emphasis is on moving

caregiving out of the hospital or the skilled nursing facility into the home, in an effort to

contain costs, it is reasonable to expect that the numbers of patients being cared for at

home by members of their family will steadily increase. Horowitz (1985b) commented:

Unfortunately, this realization of a joint responsibility arose at the same time
that policy makers and those concerned with rising social and health care costs
discovered the family as an "untapped" resource. The current scene... is one
where those who advocate additional service supports for older people and their
families are pitted against those who would like to increase family care in order
to reduce public expenditures. (p.200)










Who are the Caregivers?

The 1982 National Caregiver Profile, cited in Stone et al.(1987) noted that 72%

of all unpaid family caregivers in the United States were women. Colliere, in her 1986

feminist essay, hypothesized that as "cure" became a valued activity performed by men,

"care" became the domain of women, thus undervalued and undercompensated. "Care

remains invisible, priceless in health institutions as well as at home, and those who

provide it remain socially unconsidered and unknown" (p.105). Guberman et al.(1992)

stated: "One variable, the gender of the potential caregiver, is the most important and

the most constant indicator of involvement" (p. 607). O'Neill and Ross (1991), Green

(1991), Laitinen (1993) and Ciricelli (1992) all observed that midlife daughters

provided the bulk of care not only to their parents, but to their parents-in-law, as well.

Additionally, most caregivers continued to be employed on a part- or full-time basis

outside the home (Brody & Schoonover 1986; Davis 1992b; Horowitz 1985a).

In those instances where men were primary caregivers of their elderly parents,

Horowitz (1985a) noted that most (88%) male caregivers of older parents assumed the

caregiving role "by default." That is, they were the only living child, part of an all-male

sibling group, or the only geographically available adult child. Horowitz (1985a) goes

on to comment that "sons are not neglectful of their filial responsibilities. They are as

likely as daughters to have a parent living with them... Sons provide emotional

support, financial aid, and linkage services in almost the same proportion as do

daughters. They are, however, less likely to help with instrumental, hands-on services"

(p. 617).








4
Although most of the literature focuses on caregiving of the frail elderly by their

adult children, family caregiving also extends to caregivers of children and disabled

spouses. Horowitz (1985a) observed "men were significantly more likely to name their

wives as one of the other relatives involved in providing care to their parent than were

the adult daughters to report that their husbands were involved" (p. 615). Men,

however, have provided primary care to their disabled or frail spouses. Tumrner-Henson

(1992) noted that women provided not only most of the care for the non-

institutionalized frail elderly, but that mothers provided the bulk of the care for

chronically ill children.

It is inappropriate to assume that all care is provided by "primary" family

caregivers. A network of secondary or alternate caregivers also exists. Tennstedt et

al.(1989) formally examined the nature of secondary or informal caregiving. They noted

that secondary caregivers are most likely family members, but may include friends.

They provided a small portion of the total care, and were more likely to be involved in

care if the primary caregiver and the care receiver are not co-residents. Secondary

caregivers served as a potential pool of replacements when primary caregivers are

unable to continue to provide care.

Who are the Care Receivers?

The demography of the United States is rapidly changing. The "graying of

America" is well documented. The most rapidly growing segment of our population is

that of the "old-old," or those individuals over 85 years of age. An estimated 2.7 million

individuals over 65 years of age living in the community require assistance from others









in their home (Pousada 1995). This population, living primarily by themselves or with

family members, is larger than the entire nursing home population (1.5 million)

(Rowland & Lyons 1991), is largely female (62%), frequently minority (18%), old-old

(27%) and poor, that is, below 150% of the federal poverty line (40%). (Lenin/IF&

Brooks 1989, cited in Rowland & Lyons 1991). The primary source of health care

services for these severely disabled is informal care provided by family or friends

(Stone, Cafferata & Sangl 1987). Currently, approximately 71% of all home health care

clients (frequently being provided with complex care) are over 65 years of age. It is

estimated that functionally impaired elders living in the community will increase to 6.7

million by the year 2000 (Pousada 1995).

No database of patients who receive complex care in their homes is available,

but ever increasing numbers of adults and children on mechanical ventilation, receiving

Total Parenteral Nutrition (TPN), receiving intravenous therapy including

chemotherapy, blood, and dobutamine, requiring complex dressing changes and

peritoneal dialysis are being discharged to their homes (Arras & Dubler 1995). Since

1987, home care expenditures in the United States have increased from $4 billion to

over $22 billion; home infusion therapy expenditures have increased from $0.9 billion

to $3.3 billion, and the percentage of AIDS health care expenditures for TPN has

increased from 0.1% to 19% of total dollars (Arno et al.1995).

The caregiving research, to date, has concentrated on the caregivers of the frail

elderly and those patients with Alzheimer's Disease (AD). The needs of the caregivers

of patients requiring complex care may be similar, or may be very different. All family










caregivers may feel anxious or concerned, but caregivers of patients requiring complex

care also have to worry about the consequences of their mistakes with equipment,

failure to see a complication or inability to troubleshoot a problem. Cohen (1997)

reported the tragic near-error of the mother of a child with leukemia. The child had both

a central venous line and a nasogastric tube in place. Prior to discharge, the mother had

been shown how to dissolve an obstruction in the nasogastric tube using ginger ale.

Some time later, after discharge to the home, the central venous line became clotted.

The home health care nurse arrived at the home just as the mother was attempting to

dissolve the blood clot with ginger ale--an error that could have resulted in the child's

death (Cohen 1997). It is obvious that the mother was not able to correctly interpret and

apply information she had been given in the hospital, but other questions have to be

asked. Did the mother not understand the teaching because her anxiety interfered with

learning? Was the mother cognitively able to provide the care required? What was the

effect of the near error on the mother, her sense of competence, her self-confidence, and

her relationship with her child? The current caregiving literature does not answer these

questions. This group of family caregivers and their concerns remains unstudied.

Purpose of the Study

The purpose of the proposed grounded theory study was to answer the following

questions: (a) What is the basic social problem faced by family caregivers of patients

with complex care needs? (b) What is the basic social process used by family caregivers

of patients with complex care needs to address this basic social problem? (c) What are

the phases, strategies, properties, dimensions and consequences of the basic social








7
process? and (d) What are the social structural processes that affect family caregiving of

the patient with complex care needs?

Theoretical Framework for Grounded Theory Research

The grounded theory method of qualitative research is based largely on the

symbolic interactionism school of sociology. Bowers describes symbolic interactionism

as "a response, in particular, to the notions of society as an ordered, unified and

naturally evolving whole" (Bowers 1988, p. 35). Each individual actor is seen as a being

in process rather than as a socially determined being. The individual shapes his reality

through social interaction rather than reality shaping the individual (Bowers 1987;

Hutchinson 1993; Streubert & Carpenter 1995). The grounded theorist observes the

interactions and posits the basic social processes that contribute to the participant's

reality.

Grounded theory research grows out of the philosophic tradition of the

American pragmatist, George Herbert Mead. Mead is noted for his analysis of the

reflexive nature of interactions within the self, and for his views on social interaction.

The Self is both observer and observed, stimulus and response. It is not static, but

always in evolution (Mead 1934; Reck 1963).

Mead also concerned himself with social interaction. All human interaction is

intrinsically social. Mead observed that humans interact at both a symbolic and non-

symbolic level. In non-symbolic interaction, humans react directly to the acts or

gestures of others without interpreting them. In symbolic interaction, humans interpret

and assign meanings to the gestures of others. In each interaction, the meanings are










modified slightly, or constructed differently. All subsequent gestures and meanings are

changed. Meanings can be reflected in both language and behavior (Blumer 1969;

Charon 1979; Mead 1932). Although Mead's philosophy was foundational to its

development, it was Herbert Blumer who wrote extensively on symbolic interactionism

and its meaning. Symbolic interactionism is based on three premises according to

Blumer: (a) Human beings act toward things based on the meanings that the things have

for them, (b) The meaning of such things is derived from, or arises out of, the social

interaction that one has with one's fellows and (c) these meanings are handled in, and

modified through, an interpretative process used by the person in dealing with the things

he encounters (Blumer 1969, p. 2). Blumer noted that the meanings associated with

human activity had been widely ignored by social scientists of his time. He went on to

observe "the meanings that things have for human beings are central in their own right.

To ignore the meaning of the things toward which people act is seen as falsifying the

behavior under study" (Blumer 1969, p. 3).

The view of both Mead and Blumer on human meanings was that meaning is

constructed by an individual from all their previous experiences, their expectations, and

their interactions with others. No meaning is inherent to a specific object. Each must be

constructed. (Blumer 1969; Charon 1979; Mead 1932; Reck 1963). To fully understand

or describe phenomena, the scientist must account for the formative, interpretive nature

of meanings.

Blumer, a student of Mead, argued that given the interactionist nature of society,

the only appropriate means for studying society would be a naturalistic inquiry. In










Blumer's view, the researcher must allow for the possibility of multiple realities. He or

she must be closely connected with the subject, reflective and sensitized.

To deal with the issue of the theoretical ambiguity of social science concepts,

Blumer suggested that social scientists consider the concepts they investigate as

"sensitizing" rather than "definitive." A sensitizing concept "merely suggests)

directions along which to look" (Blumer 1954, p. 7). Blumer observed that the use of

sensitizing concepts in naturalistic inquiry is appropriate because of the dynamic, ever

changing reality in the natural world.

Both Blumner and Mead believed that appropriate rigorous scientific inquiry

could be conducted using inductive methodologies that recognized the dynamic

interaction of the observers and the observed (Baugh 1990; Blumer 1954; Blumer 1973;

Blumer 1980; Mead 1936; Mead 1938). Anselm Strauss and Barney Glaser gave social

science the methodology for conducting naturalistic inquiry in a dynamic, interactive

human system. They called their method grounded theory (Glaser & Strauss 1967).

Grounded Theory

Glaser and Strauss recognized that the basic function of inquiry is to discover

theory. Theory is useful to explain and predict behavior, advance scientific knowledge,

direct inquiry and may have practical applications as well. They disputed, however, that

the traditional logico-deductive method of inquiry generates useful theory for social

research. Their concern was that logically deduced theories can mislead researchers or

cause researchers to manipulate facts to "fit" the theory (Glaser & Strauss 1967, p. 29).










They proposed that theory useful to the social scientist be derived from the data, or

"grounded" in the data.

Theory based on data, according to Glaser and Strauss is usually not refuted by

more data nor replaced by another completely new theory. Rather, as conceptual

categories are identified by the researcher, they are compared and contrasted with other

data derived concepts. Ultimately, several of these unique categories can be combined

and organized into a "substantive theory." Substantive theories are those that have

arisen from data generated during the study of human and group interaction. Glaser and

Strauss state that samples of substantive theories include patient care, race relations,

professional education and research organizations (Glaser, et al. 1967, p. 32). The

building blocks of these substantive theories are sensitizing concepts that emerged

during data collection and analysis.

Grounded theory is not verificationist or falsificationist in the traditional

hypothetico-deductive sense. That is, the researcher does not set out to "prove" or

"disprove" a preconceived hypothesis or notion. A key component of grounded theory

methodology is the constant checking and analysis of data that occurs simultaneously

with data collection.

Grounded theory method varies from traditional logico-deductive methods of

inquiry in the area of sample selection, as well. Since a grounded theorist does not

approach his study with a preconceived notion of what theoretical concepts will emerge,

he or she can only generally describe which participants will be interviewed but cannot

predict the number of participants that will cause meaningful data to emerge during the










course of study. The size of the "sample" is determined not by the rules of statistical

analysis, but by researcher identification of conceptual categories. Data collection

continues, and new samples are selected as long as new categories and concepts

continue to be identified. Once a core group of categories has emerged, and no new ones

are forthcoming, the sample is said to be theoretically saturated and data collection

ceases (Glaser, et al. 1967).

The grounded theory method is very attractive to nurse researchers because of its

naturalistic, humanistic focus. Stem (1980), one of the first nurse researchers to use

grounded theory methodology, argued that grounded theory was most useful for the

study of previously unexplored or underexplored areas of inquiry, or to gain fresh

perspectives on familiar situations. The inductive process of gathering specific pieces of

data in the environment of study and generalizing from them is not dissimilar to what

nurses do in everyday nursing practice, gathering small chunks of data and making

specific inferences from them. In grounded theory research, the researcher does not

come into the setting with a preconceived notion of a phenomenon searching out data to

support the preconception. Rather, the researcher approaches the environment with an

open mind, attempting to set aside bias and preconceptions. As large volumes of data

are collected, either by interview, participant observation, document analysis or a

combination of methods, the researcher seeks commonalities in the observations. The

researcher tries to "make sense" of what is observed. In contrast to the quantitative or

logical positivist paradigm, where the researcher sets out to verify the truth of existing










theory, the grounded theorist, after data analysis, goes to the extant literature to search

for relationships to the emerging substantive theory.

Once multiple substantive theories have been developed, they can be used to

help generate new formal grounded theories, or enhance previously described ones. The

multiplicity of substantive theories is a strength rather than a weakness of grounded

theory methodology. Formal theories, according to Glaser and Strauss, are distinguished

one from another only by their respective degree of generalizability. Glaser and Strauss

identified stigma, deviant behavior, formal organization, socialization, status

congruency, authority and power, reward systems and social mobility as formal theories

(Glaser, et al. 1967, p. 32). It is essential, however, that all theories described by a

grounded theorist, whether they are substantive or formal theories, must have clearly

emerged from the data; that is, they must be "grounded" in the data.

When one recalls the philosophic origins of grounded theory, and symbolic

interactionism, one observes that at any moment in time, multiple realities exist. These

multiple realities exist in part, because of the dynamic individual experiences and

perspectives of each actor. These multiple realities translate directly into multiple

substantive and formal theories. Glaser and Strauss state: "multiple theories are needed

so that various substantive and formal areas of inquiry can continue to build up to more

inclusive formal theories... multiple formal theories are also necessary, since one

theory never handles all relevancies, and because by comparing many theories we can

begin to arrive at more inclusive, parsimonious levels" (Glaser, et al. 1967, p. 32).










The grounded theory method seeks to identify the true nature of "what's going

on" in the group or individual being observed. The theories that emerge from this

method can be used to generate additional study and formulate meaningful, practical

interventions. Rather than assuming the truth as the researcher perceives it, the

grounded theory method helps the researcher perceive the truth as the participant sees it.

Grounded theory has been selected as the method and symbolic interactionism as

the theoretical framework for this study because of the interactive nature of family

caregiving. Family caregivers interact with technology, with the patient, with their own

family system and home environment, as well as with the bureaucratic systems of health

care and insurance. The nature of each of these interactions is determined by past and

present experiences of the caregiver and the patient. A researcher cannot identify family

needs or plan meaningful interventions without a thorough understanding of the

meaning and process of family caregiving as constructed by the caregiver.

Significance for Nursing

As the health care delivery system moves toward a community based model,

increasing numbers of patients requiring complex care are being managed in their

homes by family caregivers. These caregivers receive varying levels of support from the

health care establishment. The financial costs and benefits of managing patients

requiring complex care in the home rather than in a hospital or skilled nursing facility

can be readily evaluated. Nevertheless, the emotional, physiologic and social costs and

benefits to the patient, the family caregivers and the household are less easy to describe.










Studies of the experiences of family caregivers of patients requiring complex

care have measured learning needs, perceived burden, stress, coping, task mastery and

respite requirements using questionnaires and standardized instruments. Few have

described the "lived experience" of the family caregiver. Other studies have examined

the financial benefits of caring for these patients in their homes, but have not asked the

caregivers of the cost or advantage to them.

Nursing traditionally includes caring for both the patient and the patient's

family. Failing to recognize the needs of family caregivers, and then subsequently

failing to respond appropriately to identified needs of family caregivers is unacceptable.

To provide effective, holistic care to patients, families and communities, nurses and

health care workers need to begin to listen and respond to the caregiver's cries for help.













CHAPTER 2
REVIEW OF THE LITERATURE

The nature of family caregiving has evolved to include not only the care of the

frail elderly, but also the care of family members with complex care requirements. The

home environment and the relationships between family members may be permanently

altered. The substance and nature of these changes have not yet been investigated. This

study is an effort to explore the problem and the process of giving care to a family

member with complex needs.

My search of the literature on family caregiving began with searches of the

computerized databases, The Cumulative Index to Nursing and Allied Health Literature

(CINAHL), Sociologic Abstracts, MEDLINE, and the online catalog of the State

University System (LUIS). In addition, I examined the reference lists in both journal

articles and scholarly texts to identify additional sources.

In this chapter, I will discuss the demographics, nature, and work of family

caregiving as well as positive and negative aspects of family caregiving. I have

proposed a definition for family caregiving, and described the needs of family

caregivers.

Family Caregiving

The phenomenon of family caregiving has been the subject of extensive study

since the early 1980s in the literature of the disciplines of nursing, gerontology and

15










social work (Barer & Johnston 1990; Davis 1992b; Kuhlman, et al. 1991; Zarit 1989).

The preponderance of the published work, however, focuses on caregiving of the frail

elderly and family members with dementia, usually related to AD. Most of the nursing

research on caregiving is independent, and does not appear to be part of a well thought

out research programme. Some notable exceptions, Archbold, Smith and Zerwekh

(Archbold, et al. 1995; Archbold, Stewart & Greenlick 1990; Cartwright, et al. 1994;

Miller, et al.1996; Smith 1994; Smith, et al. 1994; Zerwekh 1992; Zerwekh 1995) have

all conducted descriptive studies of family caregivers, designed interventions based on

their findings, and are now in the process of testing their interventions.

What is Caregiving?

There is no universally accepted definition of caregiving. Wilson (1989)

operationalized the definition of caregiving in her study of family caregivers of AD

patients to include family or friends who provided care to a patient at home and were

not reimbursed for the care. Barer and Johnson (1990) noted that caregivers have been

identified based on their relationship to the care receiver, the nature of tasks they

perform, and by the living arrangements of the caregiver and the care receiver. They

suggested that the definition of caregiving "Combine objective and self-report data" (p.

27). Bowers noted that limiting the definition of caregiving to caregivers who live with

the care recipients and provide instrumental, hands on physical care overlooks the

significant contributions of family members and friends who provide other than hands

on support to the frail elderly. She suggested that caregiving be defined as "The

meaning or purpose a caregiver attributes to a behavior rather than by the nature or








17
demands of the behavior itself. Any process engaged in for the purpose of caregiving is

therefore included" (Bowers 1987, p. 24). Davis (1992b) identified similar deficiencies

of the definition of caregiving in the literature, and noted that informal or secondary

caregivers also participate in the caregiving process. She defined an informal caregiver

as "the relative, friend, or significant other of a care recipient. The defining

characteristic of these caregivers is that they provide unpaid but important components

of care to an ill, infirm, or dependent care recipient in the home or community" (Davis

1992a, p. 2).

Not only is there a lack of consistency about what caregiving is, but also when it

begins and when it ends. Bowers (1987) believed that much care is given before the care

recipient requires physical, hands on intervention. Lindgren (1993) suggested that the

family caregiver career terminates with the institutionalization of the care recipient,

while Wilson (1989), Wilson, (1993) and M.E. Wheat (personal communication, May

10, 1995) noted that caregiver work and stress increases with the temporary or

permanent institutionalization of the care receiver. Caregivers continue to watch and

worry during care receiver hospitalizations.

What is the Work of Family Caregiving?

A natural progression of the discussion of the definition of the phenomena of

caregiving is a conceptualization of what is the work itself of caregiving. Early studies

emphasized caregiving as the provision of specific care tasks to care receivers. The care

receivers in these early studies were primarily the frail elderly, or those with AD. In a

descriptive study, Clark and Rakowski (1983) identified 45 individual caregiving tasks.










Later, in 1985, Horowitz (1985b) organized the types of services provided by family

caregivers into a typology: (a) direct care services, (b) emotional support, (c) mediating

with formal organizations and (d) financial services. In a now classic study, Bowers

(1987) noted that instrumental or hands on care is only a small portion of the work of a

caregiver. In her grounded theory study of family caregivers of the mildly impaired

elderly, five categories of caregiving were identified: anticipatory, preventive,

supervisory, instrumental and protective. Bowers noted that the non-instrumental types

of caregiving required more physical and mental energy from the caregiver than did the

instrumental, hands on care. Gilles and Bela, in 1992, divided the work of family

caregivers of family members who recently had cardiac surgery into four categories:

functional, monitoring, comfort and support work.

Lindgren (1993) and Gaynor (1990) both conceptualized caregiving as a career.

Lindgren described three distinct stages. The first stage, the encounter stage, is when

caregivers learned of and adjusted to the diagnosis, its impact, and related life style

changes. In the second stage, the enduring stage, the caregiver has developed routines

and strategies for the provision of care. The enduring stage is characterized by a heavy

work load, decreased attention to the needs of the caregiver, and social isolation. The

final stage, the exit stage, is when the time of physical caregiving became less intense,

either because additional assistance was obtained, the care recipient was

institutionalized, or the care recipient died.

Later, caregiving of other groups of clients (mechanically ventilated, cardiac

surgical, and pediatric) were conducted. Corbin and Strauss (1988) looked at caregiving










in the home and identified managing the illness, managing one's biography (caregiver

and care recipient), and managing everyday life as the primary goals of caregiver work.

Rawlins (1991), in a grounded theory study of family caregivers theorized that a basic

social process of "connecting" was inherent in all family caregiving situations.

"Connecting" and "misconnnecting" occurred between caregiver and care recipient;

caregiver and health care professionals; caregiver and social agencies; caregiver and self

as well as caregiver and other family members. Family caregivers of hospice patients

have needs that differ from family caregivers of the cognitively impaired, hypothesized

Hull (1990). These family caregivers conceptualized their primary work as the

management of patient symptoms, maintenance of patient safety, administration of

medications and meeting the patient's basic physical needs. In her ethnographic study of

family caregivers, Hasselkus (1988) observed that much of the work of caregiving is

invisible. The invisible work includes maintaining a sense of self, believing that one is

managing, concerns about the future, fear of change and changing roles and

responsibilities. Family caregivers of persons with AIDS (acquired immune deficiency

syndrome) are also being studied. Brown and Powell-Cope (1991) identified the basic

social process of uncertainty as characterizing caregiving in AIDS families. The work of

these families was described as managing and being managed by the illness, living with

loss and dying, renegotiating relationships, going public, and containing the spread of

the human immune deficiency virus (HIV).










What is the Motivation of the Caregiver?

Few studies addressing motivation to provide care have been conducted.

Fourteen distinct motivating factors were identified by Guberman, Maheu and Maille

(1992) which were then clustered into three groups: motives related to family,

institutional and community resources; motives related to the caregiver, and motives

related to the care receiver. They summarized:

[The] decision to assume caregiving is never the result of one and the same
factor. Any attempt to explain the process must take into account the complexity
of main and secondary factors, precipitating and incidental factors that come into
play, interact and are transformed over time (p. 617).

Gubrium (1988) observed that family history and kinship priority were both significant

factors in assuming the caregiving role: "The issue of who the caregiver is, or caregivers

are, may require a decision about, say, whether one is an adult child to one's parents

first, or a parent to one's children" (Gubrium 1988, p. 204). Smith (1994) noted, in her

study of the caregivers of technologically dependent adults, that caregivers have two

distinct types of helping motivation: empathetic (wishes to have the needs of the care

recipient met) and personal distress (caregiver will be less personally distressed if the

needs of the care recipient are met). Smith examined these variables in relation to

caregiving effectiveness, but it is possible that both types of motivation are also a part of

making the decision to provide care. Wood (1991) asked the question "What is it like to

be a caregiver?" and noted that family members provided care because they believed it

is their "responsibility" to provide care because of their relationship to the care receiver,

or because there was no other individual available to give care. A sense of filial








21

obligation to provide caregiving was also identified as a strong motivating factor (Albert

1992; Finley, Roberts & Banhahan 1988; Noonan, Tennsted & Rebelsky 1996). Finley

et al. (1988) observed that factors influencing the degree of perceived filial obligation

include structural and demographic variables, role conflict, parent type (mother or

father, mother-in-law or father-in-law) and gender of the potential caregiver. They noted

that the warmth and affection in a parent child relationship neither predicted nor were

enhanced by caregiving by an adult child. In an ethnographic study of family caregivers

of hospice patients, Wilson commented "Family members made the decision to become

caregivers because they believed caring for a family member to be a moral

responsibility ... Families also assumed the caregiving role out of a moral obligation

that relieves them of a sense of guilt later" (Wilson 1992, p. 74). Others (Hazlett 1989;

Horowitz 1985a) observed that the caregiving role was thrust on families because of the

economic realities of health care coverage (or lack thereof). Kosberg and Cairl

commented: "Involving family in the care of older persons occurs for a variety of

reasons; professional insistence, public policy, cultural norms, and family preference"

(Kosberg & Cairl 1986, p. 272).

Once caregivers, their work and their motivation have been identified, it is

logical to ask: "What is good or rewarding about the caregiving experience?" and "What

is negative about the caregiving experience?"

Positive Aspects of Caregiving

After a superficial look at the literature, it would be easy to assume that family

caregiving is the source of much strain and burden and that all family caregivers are










depressed and feel trapped by their situation. Indeed, many studies support such a

position. Relatively few investigators have examined any positive aspects of caregiving.

The concept of mutuality or reciprocity has been studied by Smith (1994) as well as by

Archbold, Stewart, Greenlick and Harvath (1990). Archbold and her colleagues noted

that mutuality, which they defined as "the ability to find gratification in the relationship

with the impaired person and meaning in the caregiving situation" (Archbold, et al.

1990, p. 376). was inversely correlated with caregiver role strain. Smith (1994) went on

to observe empathetic motivation and mutuality positively influenced caregiver self

esteem, and that increased caregiver self-esteem was associated with increased quality

of life for both the caregiver and the care receiver. Families of hospice patients

described caregiving as both rewarding and frustrating. (Wilson 1992). Martie, Stephens

and Odense (1997) observed a direct association between satisfaction with caregiving

and satisfaction in the workplace when studying women who were both caregivers and

employed outside the home. Caregivers of mechanically ventilated clients also reported

satisfaction with the caregiving role, but were unable to articulate specific satisfiers

(Findeis, et al. 1994; Sevick, et al. 1994; Smith, Smith & Toseland 1991). Husbands and

wives, however, articulated caregiving satisfiers as the ability to maintain love,

commitment, martial ties, a common home and life with their disabled spouses (Bishop,

et al. 1986; Motenko 1988). The families of chronically ill children with complex

technologic home care requirements reported to Teague, Fleming, Castle, Kiernan,

Lobo, Riggs and Wolfe (1993) that "the nature of their situation made them a better

family" (p. 230). Wood summarized: "Many caregivers received a sense of fulfillment










in knowing that they were putting forth their best effort in assisting their loved one...

Some said they had developed an appreciation for life in general" (Woods 1991, p. 198).

Family strategies to enhance caregiver satisfaction and caregiver effectiveness

have also been described. One interesting strategy, described by Affleck, Tennen,

Pfeiffer, Fifield and Rowe (1987) is the use of downward comparison. In downward

comparison, the patient or caregiver positively compares his experiences, limitations or

assets to those of another individual who is perceived to be "in worse shape." According

to these investigators, those patients or caregivers who employ the strategy are more

positively adjusted than those who do not.

The use of enrichment processes by family caregivers was described well by

Cartwright, et al. (1994). The investigators described three elements of enrichment; (a)

acquiring symbolic meaning, (b) performing activity and, (c) fine tuning. The described

enrichment activities focused on simple actions such as watching a specific television

show, sharing music or preparing a meal together that were meaningful to both the

caregiver and care-recipients. The outcomes associated with enrichment activities

included identity sustenance of both the caregiver and the care receiver as well as

sustenance of the relationship itself.

Another strategy useful to family caregivers, particularly caregivers of children,

is that of "normalization" (Anderson 1981; Bossert, et al. 1990; Knafl & Deatrick 1986).

Parents of chronically ill children use "normalizing" as an effective management

strategy or coping style. When normalizing, parents focus their attention on the abilities









of the child rather than on its the limitations, and define their families as "normal."

Normalizing as a coping strategy in adult care situations has not yet been explored.

Other coping strategies that have been identified include maintaining a positive

attitude and deriving positive meanings about caregiving (Ray & Ritchie 1993),

joumrnaling, taking one day at a time, and prayer (Wilson 1992).

Nothing in the research literature, however, can speak as clearly as the voice of a

caregiver, "Oceangurl" on an electronic bulletin board: "I keep at it though. .believing

somewhere inside that when it's all said and done I'll be glad I did this" (America

Online, April 9 1995).

Negative Aspects of Caregiving

Numerous studies have been conducted on the negative effects of caregiving on

the caregiver. "Costs" of providing care identified by Kosberg & Cairl (1986) included:

social disruption, personal restriction, and economic costs. In a study of 413 families of

patients with AD, Chenoweth and Spencer (1986) found that the majority (60%) of the

caregivers felt isolated by the caregiving experience, and a significant portion (23%)

found the care to be both exhausting and frustrating. Forty-two specific hassles related

to the caregiving experience were identified by Kinney and Stephens (1989). The

impact of spousal caregiving on wives was examined by Sexton and Munro (1985) who

reported role fatigue, self reported decreases in personal health and decreased marital

relations in the wives of patients with chronic obstructive pulmonary disease (COPD).

In their review of the literature concerning caregiving of AD patients, Dillehay and

Sandys (1990) identified psychological, social, financial, and physical health changes in









caregivers. Psychological effects included depression, anger, anxiety, and resentment.

Wood (1991) posed the question "What is it like to be a caregiver?" in a

phenomenologic study of individuals providing care to clients with a variety of disease

processes. Her participants identified excessive time commitments, inability to leave the

care-recipient for more than a few hours, physical, and emotional exhaustion as negative

outcomes of the caregiving experience.

Specific areas of concern that have received special attention by the research

community include depression, role strain and burden. As with other caregiving

research, these phenomena were mainly studied in the caregivers of the frail elderly and

those with dementia.

Defining burden. One concern with the caregiving literature is the lack of a

universally accepted operational definition of burden. The American Heritage College

Dictionary (1993) defines the noun burden several ways: "2.a. Something that is

emotionally difficult to bear. b. A source of great worry or stress; weight. 3. A

responsibility or duty (1993, p. 187). Burden as a verb is defined "To weigh down,

oppress. 2. To load or overload" (p. 187). The lack of a common definition of a burden

was cited by Bull (1990), Kuhlman, et al. (1991), and Braithwaite (1992) as a major

concern for researchers. Poulshock and Deimling (1984) stated "The definitions range

from burden as emotional costs qua feelings of embarrassment and overload to specific

changes in caregiver's day-to-day lives such as disruption of daily routine. Other areas

include financial difficulties, role strain and physical health deterioration" (p. 23.

Gaynor (1990) defined burdens as a "life stressor" (Gaynor 1990, p. 209), a definition so









vague as to be nearly useless. Folkman saw burden as depending entirely on its

subjective aspects, its assessment by the caregiver. "The extent to which the caregiver is

bothered by caregiving-related disruptions having to do, for example, with work,

community activities or personal goals" (Folkman, et al. 1994, p. 746).

Types of burden. In the early 1980s, Thompson and Doll (1982) divided burden

into the categories of subjective (burden was perceived or felt by the caregivers

themselves) and objective (actual impact of burden on family structure, finances,

activities, etc.). Poulshock and Deimling (1984) argued that the term burden should be

restricted to caregiver distress secondary to the physical or mental impairments of the

care receiver, and that the term "impact" be substituted for objective burden. Subsequent

definitions of burden specify only subjective aspects of burden, specify only objective

(impact) aspects of burden or both subjective and objective aspects of burden. George

and Gwyther (1986), crafted a frequently used definition including both subjective and

objective aspects: "The physical, psychological or emotional, social and financial

problems that can be experienced by family members caring for impaired older adults"

(p. 253). Other terms, such as caregiver strains have appeared in the literature, but none

seem to have displaced the concept of burden.

Relationship between burden and caregiving. Part of the difficulty in defining

burden is its unclear relationship to caregiving and other variables. Is it an outcome of

caregiving or as a variable influencing caregiving? Is it both? Young and Kahana (1989)

as well as Bull (1990) viewed burden as an outcome of caregiving. In 1984, Poulschock

and Diemling were unable to determine if burden was antecedent to caregiver








27
depression, another frequently measured variable, or if burden was a result of caregiver

depression.

Gender and caregiver burden. Much of the literature reflects that there may be

some distinct differences between men and women in their perceptions of caregiver

burden. Barusch and Spaid (1989) studied caregiver burden in older spousal caregivers.

They noted that women reported greater caregiving burden than did men, and that older

women reported greater caregiving burden than did younger women. In a longitudinal

study of spousal caregivers, Zarit, Todd and Zarit (1986) observed that wives reported

increased burden early in the caregiving experience, but that the gender difference in

reported burden disappeared at the time of the follow-up interviews two years later.

Young and Kahana (1989) also found increased reports of burden not only by

wives, but also by daughters and non-spousal caregivers. Increased burden is also

reported by caregivers who are employed outside the home (Sharlach et al. 1991;

Young, et al. 1989; Zarit, et al. 1986), although others have observed that employment

decreases caregiver's perception of burden (Loomis & Booth 1995; Orondenker 1990).

Evans (1986), when studying family caregivers of patients who were rehabilitating from

strokes, noted that reported caregiver burden increased in caregivers who were very

compliant with the expectations of the rehabilitation team. Other investigators have also

noted that behavior and expectations of the health care team can actually become a

source of burden to the family caregiver (Adams 1994; Affleck, et al. 1989; Barusch, et

al. 1989; Davis 1992b; Eustis, Fischer & Kane 1994; Hasselkus 1988; Hooyman, et al.

1985; Hull 1991; Nuttall 1988; Pratt, Schmall & Wright 1987; Ray, et al. 1993). When










caregivers of mechanically ventilated patients were studied by Findeis et al. (1994),

families reported that the physical aspects of patient care were not particularly

burdensome, but that difficulties with medical supply companies, insurance companies

and home health agencies constituted significant sources of burden.

The relationship between burden, depression and role strain. There has been

considerable research attention given to other aspects of caregiver burden such as

depression and role strain. It is unclear if these elements are antecedent, concomitant,

modifiers or the result of caregiver burden. Poulschock and Diemling (1984) noted a

consistent relationship between measurements of caregiver depression and caregiver

burden, but were unable to determine if depression was an effect or an antecedent of

burden. Seventy-three family caregivers of children with "high tech" home care needs

were interviewed by Teague et al. (1993). Significant relationships between caregiver

satisfaction and depression, caregiver satisfaction and role strain as well as caregiver

satisfaction and financial concerns were noted. Kornblum and Anderson (1982) noted

that chronic grief, recurring sadness or chronic sorrows are expected phenomena in

family caregivers. They commented that the expectation health care workers hold that

families will achieve a level of acceptance is "unrealistic and counterproductive" (p.

171). Robinson (1989) noted that the personal health of the caregiver and the ability of

the caregiver to ask for assistance are significantly related to caregiver depression.

Other negative aspects of caregiving. Other negative effects of caregiving on

families include altered family relationships and family breakdown (Abel 1992;

Kacmarek 1994; Gaynor 1990; Lyman, Wurtele & Wilson 1985; Nuttall 1988; Pierson










& George 1986; Quint, Chestman & Crain 1990). In describing home care of

mechanically ventilated babies Kacmarek (1994) stated forcefully: "Families with

preexisting social or financial problems are not likely to survive intact after the

placement of a ventilator-assisted infant into the home (p.552). The social climate of

the family itself was found to be a potent predictor of caregiver well being in a study of

parental caregivers of mentally retarded adults (Seltzer and Krauss 1989 ). Semple

(1992) noted that family conflict between caregivers and other members of the care-

recipient's family was associated with increased caregiver depression and anger.

Burnout in the spousal caregiver role with negative effects on the marital relationship

was observed by Ekberg, Griffith and Foxall (1986).. Adverse effects of caregiving on

general social relationships were also identified by Davis (1992b) and George and

Gwyther (1986).

If so many negative effects are associated with family caregiving, is there any way

health care professionals can identify or predict those at highest risk of negative effects

of caregiving? Several authors have suggested a link between increased caregiver

burden, caregiving effectiveness and care-recipient abuse, although no one has

definitively demonstrated this. Philips (1989) stated forcefully "keeping family

caregivers mentally and physically healthy and helping them continue with their role

responsibilities, therefore, is more than nice; it is central to meeting the long term care

needs of elders" (Philips 1989, p. 795).

Caregivers at risk for increased burden. As previously discussed, women who are

caregivers have been identified by several investigators as being at higher risk of








30
caregiver burden than their male counterparts. What factors other than gender can assist

the health care team in identifying at-risk caregivers?

Lack of, or inadequate preparation for the caregiving role has been suggested by

Archbold et al. (1990) as a significant predictor of caregiver role strain. Indeed, they

noted that the adverse effects of inadequate preparation on role satisfaction and role

strain is irreversible after six weeks. Archbold and her colleagues are currently

implementing an intervention program designed to increase caregiver preparation

(Archbold, et al. 1995). Baillie, et al. (1989) identified caregivers at risk for

psychological distress or depression as those who care for a mentally impaired elder,

who have provided care for an extended time, and who have low social support.

Barusch and Spaid (1989) noted a connection between caregiver age and overall

personal coping patterns and caregiver distress. They also noted that involving adult

children in a spousal caregiving dyad sometimes increases rather than diminishes

caregiver burden. Cantor (1983) observed that the relationship between caregiver and

care receiver was significantly related to caregiver strain; those individuals with the

closest bond with the care-recipient exhibited the highest level of strain. Clipp and

George (1990) noted that those caregivers who received the highest level of social

support reported the lowest level of strain. Unfortunately, individuals who were

homebound, with low spirits and life satisfaction, and low incomes, although clearly

needy, received the lowest levels of social support. An interesting relationship between

a reported caregiver burden and the level of caregiver formal education was observed by

Quint et al. (1990). They noted that caregivers with formal education exceeding 12










years reported more strain and disruption of social relationships when compared to

caregivers with a lower level of education.

No one tool or formula has emerged to assist the health care team in identifying

at- risk caregivers. Melillo and Futrell (1995) have developed a Caregiver Assessment

Guide based on their review of the literature. While the tool has not been empirically

tested, it does address most of the issues identified in current research and shows

promise for use in clinical practice.

Knowing that female caregivers with close relationships to the care receiver, who

have given care for an extended period to a mentally impaired individual with low

levels of social support leads us to two new questions: "What do the caregivers feel they

need from the health care team? and "How can the health care team best meet these

needs?"

Meeting the Needs of Family Caregivers

When reviewing the caregiving literature to determine how the health care team

meets the needs of family caregivers, one disturbing fact emerges. The perception of

what is needed, and what is appropriate, is widely discrepant between health care

providers and family care givers. Indeed, as previously mentioned, health care providers

are often a source of significant stress for family caregivers. In some cases,

interventions that are implemented without an adequate assessment of caregiver need

are actually counterproductive (Affleck, et al. 1989). The discrepancy may be as basic

as varying understandings of the meaning of sickness between family caregivers and










health care workers, (Anderson 1981) or as profound as labeling a family's adaptive

response as pathologic (Knafl, et al. 1986).

Affleck et al. (1989) randomly assigned the mothers of infants in the NICU

(Neonatal Intensive Care Unit) to support or control groups. At the conclusion of their

study, they noted that the mothers who benefitted most from support groups were the

ones who had identified that they were in need of support. Those mothers in support

groups who did not feel that they required specialized support actually experienced

disruptions in their adaptations to the caregiving role. Similarly, Hull (1991) noted that

only families who wished to "vent their feelings" found strategies designed to allow

them to do so as useful and supportive. Families that did not wish to "vent" found the

same nursing activities non-supportive and intrusive. Komelasky (1990) hypothesized

that teaching CPR to parents of apnea-monitored infants would decrease their anxiety.

Families had not identified lack of knowledge about CPR as a source of anxiety and

stress, and did not exhibit any decrease in anxiety. Hooyman et al. (1985) examined the

effect of the withdrawal of chore and housekeeping services on family caregivers. They

noted that there was no difference in reported caregiver burden before and after the

withdrawal of services. This can be interpreted to mean that the intervention of chore

and housekeeping service was implemented without an adequate assessment of

caregiver needs.

It is clear that careful assessment of families, patients, and their needs is essential

prior to the implementation of any interventions. Patricia Archbold and Barbara Stewart

stated in an interview: "It is our opinion that caregiving is such a complex phenomenon










that individualized intervention based on a thorough understanding of the particular

family situation may be the most effective means of maximizing the beneficial and

minimizing the negative effects of caregiving" (Davis 1992a, p. 83).

Failure to meet identified caregiver needs is also clearly demonstrated in the

research literature. After interviewing a sample of 413 families, Chenoweth and Spencer

(1986) reported that 20% of families were given no explanation or information about

AD, and only 28% felt that they had received adequate information about the disease.

Rawlins (1991) related a family's story of avoidance and deception by health care

workers when discussing the birth defects of their newborn child. Creasia (1992) noted

that 10.9% of the family caregivers in her study reported that they required community

or home health services that were not available to them. One of the most frequently

identified family needs, respite care (Chenoweth, et al. 1986; Clipp, et al.1990; Grant &

Bean 1992; Rawlins 1991; Thomas, et al.1992), is a need that is seldom met (Whitcomb

1986; Wilson 1993).

What Needs have Caregivers Identified?

Learning needs, the need for information, skill development and preparedness are

frequently mentioned by families as critical needs (Archbold, et al. 1990; Chenoweth, et

al. 1986; Smith, et al. 1994; Thomas, et al. 1992). Thompson and Richmond (1990)

noted that families of mechanically ventilated clients wished to understand the technical

aspects of care as "very important" and the theoretical aspects, such as nutrition,

anatomy and physiology as only "slightly important." Rawlins (1991) described family

caregiver needs as the need for help, the need for hope and the need for happiness. The









need for social support and social participation was noted by Baillie et al. (1989),

George and Gwyther (1986) and Teague et al. (1993). Family caregivers have expressed

the need to be treated with dignity and respect and that their contributions to care, as

well as their knowledge about care need to be valued by the professional health care

team (Davis 1992a; Hasselkus 1988; Glasser, et al. 1992; Pratt, et al. 1987; Semple

1992; Washington & Schwartz 1996). Smith et al. (1991) performed a content analysis

on taped records of counseling sessions. Families identified several areas of need to be

focused on during the sessions: (a) improving coping skills, (b) meeting elder's care

needs, (c) responding to family issues, (d) concern over the caregiver-recipient

relationship, (e) feelings of inadequacy and guilt and (f) planning for the elder's future.

Strategies to Meet the Needs of Family Caregivers

In a 1989 editorial, Steven Zarit asked the question "Do we need another 'stress

and caregiving' study?" He suggested that the research community had adequately

identified that the phenomena of caregiver stress does indeed exist and commented that

the time had come to begin interventional studies to identify successful strategies for

minimizing the adverse effects of caregiving. Unfortunately, while there have been

some studies conducted testing various interventions, they have tended to be restricted

in scope. To date, a long term longitudinal study observing interventions in different

groups of caregivers has not yet been conducted.

One group of researchers at the University of Kansas, under the direction of Carol

Smith, is involved in a program of NINR (National Institute of Nursing Research)

funded research on family caregiving of patients receiving total parenteral nutrition and








35
patients requiring respiratory support. Results of their quantitative studies are providing

valuable information about these specific groups ofcaregivers. They have not yet,

however, published any studies evaluating the outcomes of specific interventions or

made specific research-based recommendations for interventions for these family

caregivers (Femengel 1994; Smith 1991; Smith 1994; Smith, et al. 1994; Smith, et al.

1998).

Several investigators, rather than looking at specific interventions, have

endeavored to identify how helping strategies are viewed by family caregivers or

patients. Skorupka and Bohnet (1992) asked the families of hospice patients to place

specific nursing behaviors on a scale ranging from most to least helpful. Most helpful

nursing behaviors included: (a) provision of necessary emergency services, (b) 24 hours

per day, seven days per week availability of needed nursing services, (c) open, honest,

willing answers to family questions, (d) allowing the patient to do as much for himself

as possible and (e) teaching family members how to keep the patient comfortable.

Families identified the following nursing behaviors as least helpful: (a) prayer with

caregiver, (b) facilitating the caregiver meeting others with the same problem to discuss

feelings, (c) helping the caregiver to understand what the loss of the patient will mean,

(d) assistance with funeral arrangements and (e) crying with the caregiver. Similarly,

Rieman (1986) interviewed patients about caring and non-caring behaviors. In her

phenomenologic study, the following behaviors were identified by patients as non-

caring: (a) being in a hurry and efficient; (b) "doing a job," (c) being rough, belittling

patients, (d) not responding and (e) treating patients as objects. Wilson (1993) looked at










the process of providing community-based psychogeriatric care to elderly clients and

their caregivers. Wilson observed that patients and families were more focused on the

product (outcome) of care services, while providers were more focused on the process

of providing care services. Two themes emerged repeatedly as dissatisfiers: controlling

or directive behavior by the professional care provider and failure of the care provider to

respect the dignity or worth of the care-recipient.

Support groups are a frequently recommended strategy for meeting the needs of

family caregivers. No clear picture of the success of support groups in meeting these

needs emerges from the literature. Acton and Miller (1996), George and Gwyther (1988)

and Kahan, Kemp, Staples and Brummel-Smith (1985) all found support groups to be

an effective intervention. Farran and Keane-Hagerty (1994), Gage and Kinney (1995)

and White-Means and Thornton (1996) all observed, however, that support groups

either had no effect or negative effects on caregiver burden. Winslow (1998), in a

qualitative case study, suggested that formal support interventions may give family

members permission to take uncomfortable steps, such as placing their family member

in a long -term care environment.

Affleck, et al. (1989), as noted earlier, observed that only families who identified

themselves as needing support benefitted from support groups. Grant and Bean (1992),

in their study of caregivers of head injured patients noted that two of the most

frequently reported needs were for support groups and respite care. Skorupka and

Bohnet (1992), however, noted that support groups were identified by the families of

hospice patients as "non-helpful" behaviors. Others who have studied the families of









dementia patients have found the use of support groups to be helpful (Baillie, et al.

1989; Toseland, Rossiter & Labrecque 1989; Whitlach, Zarit & von Eye 1991).

Possible explanations for the discrepancies include differing needs based on

disease process (head injured, dementia, mechanically ventilated or terminally ill

clients) or placement in the caregiver career or trajectory (support groups are more

helpful as the duration of caregiving increases). Smith et al. (1991), when examining the

needs of caregiving families of mechanically ventilated clients, concluded that the needs

of family caregivers change over time. Smith went on to observe that early in the

caregiving process, families need information and support to help them meet immediate

survival needs. Later, families may benefit from information about caregiver self care,

and the disease process, but it is not until much later that families want information

about support groups and community resources. While it appears that identification of a

particular strategy is important, the identification of the optimal timing of the

intervention is also critical.

As previously discussed, families have cited very pragmatic concerns (assistance

with insurance, respite care) when asked about their needs, but the literature does not

reflect any ongoing efforts to meet these practical, frequently monetary needs. To date,

there is little evidence that systematic intervention to provide financial and emotional

support to family caregivers is occurring with any regularity (Robinson 1997).

The body of literature on family caregiving is extensive, but not exhaustive.

Because of the volume of research, and its distribution across the literature of many

disciplines, the findings are confusing and difficult to access. Barer and Johnston








38

(1990), Braithwaite (1992), and Kuhlman, et al. (1991) all wrote comprehensive reviews

of the literature in the early nineties, but these are outdated now. Walker, Pratt and Eddy

(1995) have reviewed the literature also, but only as it refers to aged care-recipients.

Family caregivers provide $18 billion dollars of uncompensated care annually in

the United States (Ward 1990), the number of patients requiring dementia care alone

will increase 500% over the next 50 years (Davis 1996). The need for complex

caregiving in the home will also increase as patients grow older, and the emphasis on

community-based care continues.

Summary

In this chapter, I reviewed the definition of family care, its demographics, stresses,

and burdens. Needs of family caregivers, and strategies for meeting them were also

discussed. This study was conducted to fill in a gap in the literature, that of

understanding the process of giving care to family members with complex care needs. It

is part of an effort to systematically identify the needs of this group of caregivers, so that

interventions and programs can be designed for them.













CHAPTER 3
METHODOLOGY


Research Approach

The grounded theory method of qualitative research was used for this study. The

grounded theory method, an inductive form of inquiry, was first identified by Glaser

and Strauss in 1967. It is a research method designed to generate theory from data

gathered in naturalistic settings. In grounded theory research, the researcher is both a

data contributor and data interpreter. The process of data collection and analysis is not

linear, but continuous and simultaneous. Grounded theory is designed to generate theory

that is "integrated, consistent, plausible, and close to the data" (Glaser, et al. 1967, p.

103) and both useful and understandable for the problem under study.

Sample Selection

Sample selection in qualitative research is not governed by the quantitative

principles of homogeneity or randomness. Morse (1986) identified adequacy (the

sufficiency and the quality of the data) and appropriateness (how well the sampling

technique "fits" the purpose of the study) as the two most important criteria for

evaluating a sample in qualitative research. The qualitative researcher is most concerned

with good representation of the theoretical constructs (Polit & Hungler 1995).

Typically, samples in grounded theory research are selected both purposively and

theoretically. A purposive sample, according Polit and Hungler (1995), is "selected for










the study on the basis of personal judgment about which [participants] will be most

representative or productive" (Polit, et al. 1995, p. 650). Theoretical sampling is a

second critical sampling strategy. Theoretical sampling, based on ongoing data analysis

(Sandelowski 1986), is a technique by which the researcher selects participants who will

be able to provide meaningful data. When no new categories or content emerge during

coding, data saturation has occurred and participant recruitment ceases (Hutchinson

1993). The goals of sampling in this study were appropriateness and adequacy.

Initial purposive sample selection for the interview portion of this study included

recruitment of families who were providing care to patients requiring complex care in

northeastern Florida. Complex care was defined as

Procedural care that requires specialized cognitive and psychomotor skills, must
be learned from a health care professional, and is necessary to maintain life or
restore wellness in the care receiving individual. Examples include, but are not
limited to: maintenance of invasive intravenous lines and administration of
intravenous fluids and medications; dressing changes requiring aseptic technique
and/or wound packing and irrigation; maintenance of wound drainage devices;
tracheostomy care and suctioning; procedures requiring the use of high-tech
equipment: IV pumps, cardiac or apnea monitors, mechanical ventilation;
peritoneal dialysis; or specialized beds.

As an experienced critical care nurse, I initially planned to make the judgment if the

care being provided was complex.

A family caregiver was defined as an individual "who provides complex care to a

patient on a regular, ongoing basis, and who is not receiving financial compensation for

the services provided" (Robinson 1996). Multiple family caregivers may care for each

patient.









Families were recruited through the assistance of nurses and case managers in

from sub-acute and rehabilitation facilities (n=4), a Parish Health Nurse program (n=--3),

a newspaper item (n=l), and word of mouth (n=2). The interview sample consisted of

12 caregivers, all female and Caucasian. Two African-American and two male

caregivers were asked to participate, but declined. The ages of the participants ranged

from 25 to 68 years. The range of duration of caregiving was six months to 14 years.

The total number of years of caregiving provided by the respondents was approximately

62 years. All but one had completed high school; two had completed some graduate

level course work. All the family caregivers interviewed were related to the care

receivers by blood or marriage; four were daughters, three were wives, four were

mothers, one was a sister-in-law, and one a granddaughter. One caregiver had cared for

her son for 14 years, and her husband for five. The age of the care-recipients ranged

from eight months to 86 years.

First-person accounts of caregivers on the Internet provided an unexpectedly rich

source of textual data. The Internet sites were identified through the use of search

engines (Alta-Vista, Excite, and Yahoo!), and through links embedded in caregiver's

pages. Some caregiver sites are part of a "ring," where links to all other sites in the ring

are automatically provided.

More than 100 web pages were reviewed, including personal journals, articles

written for other caregivers, and more than 1,000 entries on web page "guest-books"

were reviewed for written evidence of complex caregiving. Of these, more than 150










first person accounts were selectively coded, looking for themes and content that had

emerged during the analysis of the interview data.

The Internet sample included both male and female caregivers: spousal and filial

caregivers, and caregivers who identified themselves as boyfriends, girlfriends,

significant others, lovers, or partners. Consistent demographic information for the

caregivers who use the Internet to express their viewpoints and feelings was not

available, but respondents represented different nations (United States, Spain, Brazil,

Mexico, Netherlands, Australia, and the United Kingdom), occasionally stated their

ages (range 16 to 90 years), and cared for family members with a variety of illnesses

(stroke, Peck's Disease, amyotrophic lateral sclerosis, traumatic brain injury, diabetes,

heart disease, muscular dystrophy, multiple sclerosis, cancer, genetic disorders, cerebral

palsy and AIDS over the life span (birth through 90 years). They described performing

hemodialysis, wound care, tube feedings, intravenous therapy and ventilator

management in the home. These first person accounts were especially powerful because

their writers were not responding to the questions of an interviewer, but were, instead,

spontaneously sharing their perceptions, feelings, frustrations and satisfactions related

to caregiving. The same themes that surfaced during the interviews were present in the

Internet data as well.

A more comprehensive view of dissatisfied caregivers was obtained from the

Internet data, suggesting that the individuals who made referrals to me for interviews,

tended to identify satisfied caregivers. During participant recruitment, a few caregivers

declined to participate, usually citing "lack of time" as a reason. It is possible that there










were a larger number of dissatisfied caregivers among this group. Dissatisfied,

frustrated caregivers chose the Internet as a venue for speaking out.

Data Collection

Twelve caregivers participated in audio taped interviews. The interviews lasted

from 45 minutes to three and one-half hours. A total of 26 hours of interviews were

conducted. All interviews occurred at a site selected by the caregiver, only two chose to

meet outside their homes. Additional sources of data included participant observation of

caregiving during the interviews. Documents maintained by caregivers to organize care,

and professional and popular literature were reviewed. Theoretical memos and codes

were maintained on this data.

Field notes describing the setting, any events that occurred during the interview,

and any observation of caregiving that occurred were dictated into the tape recorder

immediately after each interview. I transcribed the tapes verbatim as soon as possible

after the interview. The total number of transcribed pages was 740.

In grounded theory research, question formulation, sample selection and data

analysis occur simultaneously and influence one another. Interview questions are

expected to change over time and from participant to participant. Questions are

modified in order to advance the theory (Stem 1980). The interview guide (Appendix

A) was used to begin the interview. Additional questions based on participant response

were asked to permit the respondents to elaborate.










Data Analysis

Data analysis in the grounded theory method occurs along with data collection.

The term used most often to describe this type of data analysis is constant comparison,

first described by Glaser and Strauss in 1967. The constant comparative method requires

comparing incidents with incidents, incidents with categories, and incidents and

categories with constructs (Glaser 1978). Data analysis for this study was conducted

using Glaser's and Strauss' approach to data analysis as outlined both in The Discovery

of Grounded Theory (1967) and Glaser's approach in Theoretical Sensitivity (1978).

Coding

The first step of data analysis, according to Glaser (1978) is open coding. In open

coding the researcher analyzes the data on a line by line basis. The researcher

continually asks two questions during open coding: "What is this data a study of?" and

"What category does this incident show?" (Glaser 1978, p. 57). These substantive codes

constitute the Level I codes originally described in The Discovery of Grounded Theory

(1967). As the open coding continues, the researcher gradually begins to cluster the

Level 1 codes into categories (Level II codes). As emerging categories are compared

with each other, as well as with the substantive codes, the researcher identifies a basic

social process, theoretical construct or core variable. Once a core variable has been

identified, and appears to have worth and "fit," open coding ceases and selective coding

begins.










In selective coding, the researcher limits coding to a few codes that appear to be

particularly relevant to the data. In this study, the first person Internet accounts were

selectively coded. Once these major categories were identified, I based further data

collection and sample selection on them (theoretical sampling) (Glaser 1978). Any new

codes identified are examined for their relationship to the identified core codes. When a

process that explains all behavior variations and interactions is identified by the

researcher it is called the basic social process (BSP).

Basic Social Process

Glaser (1978) identified two types of BSPs: the basic social structural process

(BSSP) and the basic social psychological process (BSPP). The BSPP describes a social

psychological process such as becoming, integrating, surrendering care, etc. A BSSP

describes social structures that "aid or abet" the BSPP (Glaser 1978, p. 102). In this

study, becoming a "lay nurse," is a BSPP.

Memoing

Memos are an important analytic tool for the grounded theory researcher. Glaser

(1978) describes memos as "the theorizing write-up of ideas about codes and their

relationships as they strike the analyst while coding" (Glaser 1978, p. 82). During data

analysis, I stopped and made a note any time any observation about the data or possible

connection between data elements occurred. I continually reviewed and organized the

memos, assisting in the identification of the basic social problem and basic social

process.










Data Management

The interview data and memos were transcribed into WordPerfect, Version 6.1.

Open and theoretical codes were entered into a relational database, Microsoft Access

97 which facilitated sorting, clustering and modifying codes.

Maintaining Rigor

In qualitative research, the researcher is considered a primary research instrument

(Creswell 1994; Hutchinson 1993; Polit, et al. 1995; Streubert, et al. 1995). A

researcher's past experience with the area being studied can be perceived to be a source

of bias or as bringing richness to the research endeavor (Lipson 1991). I have been a

Registered Nurse for 25 years. Additionally, I was a family caregiver for a severely

physically and cognitively impaired elderly relative. These experiences sensitized me to

nuances in interviews that might be missed by an individual with differing life

experiences. To assure that I did not use my experiences to artificially shape or interpret

the data, I kept a journal, reflecting my personal feelings and insights. Researcher

journaling is an important technique to assure that the researcher is continuously aware

of how the interpretation of the data may be affected by his or her personal feelings,

experiences and expertise. Sandelowski noted that "the threat... can be offset by

deliberately focusing on how the research influenced and was influenced by a subject"

(Sandelowski 1986, p. 30)

The terms credibility, applicability, auditability and confirmability are used by

Guba, Lincoln, and Sandelowski to refer to the various components of scientific rigor in

qualitative research (Guba 1989; Guba & Lincoln 1981; Sandelowski 1986). Credibility










refers to the truth value or believability of a study. It is roughly analogous to the

quantitative concept of internal validity. Another common technique for enhancing

credibility in qualitative studies is member checking. In member checking, the analysis

of the data is shared with a participant in the study. The participant, after reading the

analysis, can share with the researcher if the analysis is "on target," or if it does not fully

describe the interactions and social processes. Applicability, a concept roughly

analogous to the quantitative "external validity" is a measure of how well the findings of

the study "fit" the data from which they are derived (Sandelowski 1986, p. 32).

Applicability can be assessed by member and peer checking. In this study, the basic

social process and the basic social problem were reviewed and discussed with family

caregivers of patients requiring complex care, some who had participated in the study,

and others who had not. These members affirmed that the identified basic social problem

and basic social process captured their experiences as caregivers. Peer checking of

coding and interpretation was conducted continually during the study with the

Supervisory Chair, Dr. Sally Hutchinson, and fellow qualitative researchers, Drs. Edie

Devers, Kathy Ebener, Cathy Hough and Li Loriz. The peer reviewers supported the

coding scheme.

Consistency is the qualitative characteristic most closely related to quantitative

reliability. By its very nature, qualitative research cannot be replicated. That is, the same

interviews, the same data, the same interactions will never occur again because of the

dynamic interactive qualities of the participants and life events. However, it is necessary

for a qualitative researcher to be able to demonstrate the analytic process to an outside








48

observer. This "auditability" can be achieved by clear written descriptions of the analytic

process, retention of the raw data and the techniques used to maintain scientific rigor.

All the initial and modified codes, as well as theoretical notes and memos have been

retained by the researcher and monitored by Dr. Sally Hutchinson.

According to Sandelowski (1986), confirmability is the characteristic of

qualitative research that is most analogous to neutrality or objectivity in the quantitative

paradigm. In quantitative research, the objective is for the researcher to be completely

neutral, so as not to introduce bias into the findings. In qualitative research, the

researcher is not expected to be neutral, but rather to be deeply involved with the

participants. Confirmability, which Sandelowski believes exists when auditability, truth

value and applicability are achieved, relates to the findings themselves rather than to the

researcher or the design.

Ethical Issues

In qualitative research, as in quantitative research, the rights of the participants

should be carefully guarded. According to Munhall (1988), the philosophic basis of this

protection of human rights is the predominantly deontologic framework of the nursing

profession. Nurses have a duty to see patients as ends themselves, not as means to an

end.

During this research, participant autonomy, privacy, confidentiality, and

anonymity were maintained. The nature of the research was explained to all participants,

and their verbal and written consent obtained (Appendix B). Before the initiation of the

study, approval was obtained from the Institutional Review Boards (IRB) of the










University of Florida Health Science Center; Jacksonville, Florida (Appendix C) and

Memorial Hospital of Jacksonville (Appendix D).

Several ethical issues may arise during the course of qualitative research by

nurses: (a) the participants may share, or the researcher may observe, instances of

medical, nursing or custodial care that are not consistent with accepted standards of care,

(b) the participant may expect the researcher to assist in the resolution of identified

problems, or (c) the researcher may wish to intervene as a nurse in a caregiving situation.

This cluster of dilemmas relates to the professional and legal responsibilities as well as

the role of the nurse.

Much has been written about the conflicting roles of researcher and nurse (Fowler

1988; Munhall 1988; Robinson & Thome 1988; Swanson 1986). Munhall stated "If we

are nurses, and as such, the client's advocates, we cannot place the research imperative

above the therapeutic imperative" (Munhall 1988, p. 157). Fowler (1988) observed that

there are not two distinct roles in the nurse who conducts research, but rather, one role,

the nurse-researcher, with two aspects, the nurse and the researcher (p. 110). She

commented that "The nurse researcher, though dedicated to research, remains dedicated

to the patient first; the role of nurse supersedes that of researcher" (Fowler 1988, p.

110), and suggested that in some circumstances, where a nurse researcher's identity as a

nurse is damaged by the inability to intervene, that the nurse must withdraw from the

study.

During this study, although I had anticipated the possibility of conflicts between

the nurse and the researcher roles, the possibility of becoming aware of unsafe










conditions, and was prepared to either intervene as a clinician, or withdraw from the

research, if necessary. An instance that may have forced withdrawal from the research

would have been the inability to intervene in a situation where extreme caregiver abuse

was observed, or where inadequate caregiving was placing the life of a patient in danger.

As a nurse, and as a citizen, I would have been obliged to report such instances to the

police or other appropriate agencies. In so doing, the principal of confidentiality would

have been violated. Fortunately, no such instances of significant conflict or unsafe

caregiving occurred. In those instances where I was asked to give input as a nurse to the

family caregiver, the information sharing was deferred until the taped interview had

concluded.

Summary

The chapter has outlined the method that was used for the study. The grounded

theory method of qualitative research, the constant comparative method of analysis and

concepts of theoretical, purposive sampling were described. Ethical considerations for

nurse researchers as well as the protection of human subjects were also discussed.













CHAPTER 4
DOING WHAT YOU GOTTA DO


Complex caregiving, in the original proposal for this study, was defined as:

... procedural care that requires specialized cognitive and psychomotor skills,
must be learned from a health care professional, and is necessary to maintain life
or restore wellness in the care receiving individual. Examples include, but are not
limited to: maintenance of invasive intravenous lines and administration of
intravenous fluids and medications; dressing changes requiring aseptic technique
and/or wound packing and irrigation; maintenance of wound drainage devices;
tracheostomy care and suctioning; procedures requiring the use of high-tech
equipment: IV pumps, cardiac or apnea monitors, mechanical ventilation;
peritoneal dialysis; or specialized beds (Robinson 1997, p. 42).

Early in data collection and analysis, it became clear that this definition, and the

statement following it "As an experienced critical care nurse, I will make the judgment if

the care being provided is complex in keeping with the nature of the study" (Robinson

1997, p. 42) did not fully capture the perceptions of the family caregivers themselves as

to what constitutes complex care. A qualitative researcher is committed to listen to

participants and to relay their perspectives faithfully. The decision by a researcher as to

whether or not care is complex enough is paternalistic at best, and risks obliterating the

viewpoint of the caregivers. Repeatedly, caregivers integrate varied levels of technology

into their daily lives with relative ease, but find other aspects of care, such as the

frequency of intervention required, continuous monitoring, and assessing and dealing

with social structural issues as complex and consuming as technologic care.









The modified definition of complex care, based on the voices of family

caregivers, was as follows:

Complex care is care that requires specialized cognitive and psychomotor skills,
must be learned from a health care professional, and is necessary to maintain life
or restore wellness in the individual receiving care. Care is complex if it is
perceived to be so by the caregiver. Examples of complex care vary from the
maintenance of artificial airways and intravenous sites to ongoing health
assessments, complicated medication regimens and the frequency and intensity of
physical care.


The Nature of Complex Care

During initial data analysis, the constant demands of care, and the frequency of

interventions, emerged as previously unidentified properties that established the care as

complex to caregivers or referral sources. One daughter described having to assist her

disabled mother to get on and off a bedpan 5-6 times every night. Another discussed

administering either tube feedings or medications via a nasogastric tube (a procedure

requiring many steps) eight or nine times per day. While neither of these tasks is as

technically demanding as the administration of IV antibiotics by one mother to her

quadriplegic son every four hours around the clock, they nevertheless contributed to the

sense of complicated caregiving for these caregivers.

Closely related to frequency is the long term, never-ending nature of complex

care. One wife described herself as "on duty 24 hours per day," a mother of a

quadriplegic son remembered that during fifteen years of caregiving, she had only been

able to take one week off, to visit her first born grandchild. Even those families who are

able to obtain some outside assistance with caregiving were aware that when the help is

sick, unavailable, or not qualified, all responsibility reverts to them.









Caregiving for an individual with complex medical needs is a never-ending

process. The role and work of caregiving begins to consume the caregiver's life.

Mishaan (1997), a caregiver for her mother commented:

Caregiving in concept is one thing, reality is totally different. It is rarely
something that can be engaged in occasionally, or when the spirit moves you. If
your mother needs to be fed, she needs to be fed every day. If you father is
incontinent and can't clean himself, he needs your assistance every day.
Medications are scheduled, and so are doctor appointments and therapy, and
someone has to do the cleaning and the shopping.

In addition to frequency, complexity and the all-consuming aspects of caregiving,

many caregivers also expressed the perception that they were all alone as caregivers, that

they were required to "do it all." Caregiving is not only demanding, but also isolating.

Shapiro (1997), who cared for his wife after her stroke, commented: "The hardest

part of caregiving is going alone, doing it yourself. The loneliness of being a careperson.

You're a one-man band, you play all the instruments."

Doing What You Gotta Do

The basic social problem faced by family caregivers of individuals with complex

medical needs can be called Doing What You Gotta Do. Strong forces including role,

gender, and altruism all propel family caregivers toward their new careers. The role of

caregiver, however, is not a static one. Commonly, the care-recipients in this study

experienced acute episodes of injury or illness within the context of their chronic, usual

condition. Each critical event, each illness, each infection, changed the caregiver as well

as the care-recipient. Task after task was added to the work of the caregiver, who

characteristically integrated them into their daily routines, commenting, "You do what

you gotta do."









How Do Family Members Become Complex Caregivers?

The decision to provide complex care is not always a simple one, is seldom based

on just one factor, and does not always occur at a discrete moment in time. Most of the

family caregivers in this study were catapulted into care by experiencing a catastrophic

event, such as trauma or illness. For some, the catastrophic event was the birth of a

seriously disabled child. In both these groups of family caregivers, the process of giving

care and taking responsibility for the well being of their family member began long

before discharge. Family caregiving frequently started with a vigil at the bedside in the

hospital: "Well, in the NICU, I spent like the first three weeks at the [hospital owned

hotel] so I could be there pretty much around the clock. Except for shift change, I was

there." And "I was always there! Constantly, even at night sometimes."

Some family members, however, drifted into the complex caregiving role. B., a

67-year-old homemaker who cared for her 87-year-old husband had started her

caregiving career five years before when her husband's memory began to fail. Since that

time, as his health deteriorated to total dependence, she has learned how to maintain

urinary catheters and G-tubes, prevent aspiration, administer tube feedings by both

gravity and infusion pump, administer investigational drugs in enema form and check his

blood sugar. She constantly monitored him for recurrence of gastrointestinal bleeding,

urinary tract infection, skin breakdown, pulmonary infections, and heart failure. She

apologized while describing monitoring her husband for heart failure:

I do have a stethoscope, but I don't know how to use it yet. I'm not sure I could
hear it, you know I don't hear too well, and if I did, I would not know what I was
hearing, I'm not that trained!








55
Slowly, but surely, the family caregiver assumed a role more resembling that of a

nurse than a spouse, child, or parent. Warmth, affection, and solicitude were no longer

the only tools of caregiving; catheters, IV lines and feeding tubes became the essential

props of daily life.

Free or Forced Choice

The Duty to Provide Care

The decision to provide care, for all the caregivers in this study, was based, at

least somewhat, on a sense of duty or obligation to provide care to a family member. The

sense of duty to provide care was for some filial and for others spousal. For many

caregivers, it was also a decision based on their love for the family member. Some

family caregivers assumed the role by default when no one else was available to provide

care.

Gender Influences on the Decision to Provide Care

As is consistent with the body of caregiving literature, the bulk of care was

provided by women, daughters, wives, and mothers. In one family, a daughter was

forcibly reminded of the familial expectation that she, as a daughter, would provide care:

My sister-in-law made the comment, "Your mother has three daughters, and I'm
tired of cleaning up her diapers." And that hit home and I said "you know what,
you're right, my mother does have three daughters, I graduate [from nursing
school] on such and such a day, and I will be there the next day to get her, have
her bags packed."

Another caregiver, divorced and childless, observed that she was more "free" to give

care than were her married sisters with families.








56
Gender not only operated as a powerful force in the assumption of the caregiving

role by women, but as an equally powerful force in inhibiting the assumption of the role

by men who were not husbands. In one caregiving family, the teenage sons were

excluded from the care of their comatose grandmother. As they matured, however, and

one of them became a Licensed Practical Nurse, they were expected to participate in

physical caregiving. Their mother commented on her decision to include her sons as

young adults in caregiving:

He was, I felt, too young to take care of Mom. I could not.., and that's why I got
the [hired] caregiver. I just could not even ask them, you know to go in... He's
21 now, and he's able to do it, but to do it at 17 and 18, to go in there and care for
grandmother.., no... now if it were a GIRL, then it would have been [OK] you
know. Girls are to do all the caregiving, boys are not.


Spousal Duty to Provide Care

No male caregivers were available for interviews during the course of this

research. Several male caregivers, however, have established individual web pages with

moving first-person accounts of their caregiving experiences (Eubank 1995; Hoffminan

1998; Shapiro 1997). They describe caring for wives with Pick's Disease, Parkinson's,

Multiple Sclerosis, and strokes. The love and affection of these husbands and sons, as

well as their pain and loneliness, shine through their journal entries. Shapiro (1997)

noted: "I think I was raised to be a careperson... making them feel good makes me feel

good" (p. 1).

Gender, however, does not seem to be the only force that influences wives who

provide complex care. They viewed caregiving as an outgrowth of their marital

commitment. One commented "It's not too much to ask after 35 years of marriage," and








57
another, "I love him, I love him dearly, I will care for him until I die." These same wives

saw their marital relationship as enhanced and strengthened by the caregiving process.

One wife who cared for her husband after a stroke, multiple cardiac and vascular

surgeries, and a craniotomy noted in a guestbook for caregivers on the Internet:

It's funny how God works with me and my husband. It's like he's preparing us for
his moving on. He has his good days and his bad days, but like a child who is
weaned from its mother's breast so God weans us as he prepares us for the loss of
our loved one (Sibble 1997).

Filial Duty to Provide Care

The cultural imperative that adult children care for their aging or disabled parents

is ancient and pervasive. Some adult children derive pleasure and satisfaction from

taking care of their parents:

It's [caregiving] a very rewarding profession. I felt kind of fulfilled, and I felt,
when she passed, that I am satisfied, that I don't have any regrets whatsoever. I'm
proud that I was able to do it. I loved it, 100%, 200%! I would have take care of
her another 10 years, I wouldn't have minded.

Not all adult children derived such pleasure and satisfaction from caregiving. One

daughter, who had cared for her mother for five years, was unable to identify any aspects

of caregiving that were rewarding or satisfying for her. On the Internet, Linda (1997)

described caring for her mother:

She suffers from being overweight (300 pounds). Which in turn has caused 90%
of her illness. She has arthritis in most of her joints, high blood pressure,
congestive heart failure, urinary incontinence, taking insulin shots twice daily, and
on oxygen at night. She has become depressed, mean, and just sits in a chair most
of the day. She smells like urine. I'm at my wits end. What do you do????? I have
three brothers who don't want to bother with her. What I don't understand is that
they were also her darling baby boys, that never did anything wrong. I couldn't do
anything right! We were never close, and look how the table is turned. The one
she called names for years is the only one willing to take her in and care for her...
You know, when you're born into this world, no one tells you!









Even when the parent-child relationship has been painful or unsatisfactory, adult

children provide care. One son, who was raised by a foster mother, described his

obligation to provide care to his biological mother:

I am in a tough position. I am bound by duty and conscience to care for a mother
that was never a mother to me. I feel for her as a human but I cannot bring myself
to absolute kinship. I feel sorry for this situation and wish for more but it is simply
not there (Kenlon 1998).

The cultural imperative to provide care triumphs, whether caregivers of parents are

joyful or miserable in their roles.

Parental Duty to Provide Care

The mothers of seriously disabled children in this study assumed the responsibility

for giving complex care as a natural outgrowth of their role as mothers. To the mother of

a child with anoxic brain damage, Noonan's Syndrome (multiple congenital defects) or

extreme prematurity, there was no conscious decision to assume care. It was assumed by

parent, and by health care professionals, that the care would be provided. No mother

mentioned considering institutionalization. One mother of an adult child, who began

caring for her quadriplegic son 16 years before, stated it succinctly: "There was no

question that we were going to take care of him. We didn't have any options as far as we

were concerned about that."

One young mother of an child with an anoxic birth injury, who lives in a

persistent vegetative state, saw her decision to have a tracheostomy performed on her

infant, and her decision to care for him at home, as giving her son a chance at life.

Actually, we had to make a decision whether to take him off the ventilator or let
him have the surgery for his trache. 'Cause he had a floppy airway, every time
they took him off the ventilator, he'd stop. So it was our decision to do the surgery








59
for his trache and his g-tube or take him off the ventilator. So I chose the surgery,
I just couldn't let him go. It's been hard, but it's something I wanted to do, I
wanted to bring him home ... I wanted to go with the surgery, because I wanted
to give him a chance... If he doesn't make it, then I'll know in my heart that I did
give him that chance.

Pressure to Provide Care

Gender and a sense of duty were not the only factors influencing the decision to

provide care. Several caregivers were pressured, almost coerced, into providing care by

the care-recipients themselves. One daughter had reluctantly agreed to provide care to

her mother, provided her mother moved into the daughter's apartment. The daughter

recalled:

It didn't work out like I planned. I moved three times in one month. And she
faked [emphasized the word faked] an anxiety attack. And they put her in the
hospital. Because they didn't know what was going on. But she did it on purpose,
she said so, so that I would go back to the house, she couldn't stand staying in that
apartment.


Avoiding Nursing Home Placement. Keeping Promises

An important consideration for many caregivers was the avoidance of institutional

or nursing home care. Participant after participant noted that they could not send their

loved one to a nursing home. One caregiver, who subsequently removed her mother

from a rehabilitation center which was part of a nursing home, described seeing her

mother:

So, I went to see her in this rehab place, and she was in this wheel chair, and she
looked like.., she was in the room by herself... and didn't know I was there,
and she looked like a little bitty rag doll sitting in this great big chair. And she had
her head down, and my heart was broke when I saw that. And they had been kinda
mistreating her there. And I said, I can't let her do this, I can't put her in there...
she's been in one before, because of three months of rehab and it was very nice,
and they took very good care of her, but this last place, they just... she didn't get









her medications when she was supposed to, and she didn't get a bath, and I was
real.. everybody was upset with them. And, so, I said "I can't put her into a
place like this."

A mother who has been caring for her 31 -year-old son, who sustained a devastating

traumatic brain injury 14 years before commented on the Internet: "I would never put

him in a nursing home here. They are terrible here and he cannot speak for himself. I

would worry most that he would be sexually molested" (Meacham 1998).

For some caregivers, the imperative to avoid nursing home placement, is based on

previous negative experience, such as the neglect of a loved one in a nursing facility:

"When he got out of the hospital, the doctor suggested a nursing home, but my Daddy

had died in a nursing home of cancer only 6 months before and I just couldn't do it"

(Bonnie 1998). For others, their refusal to place the care-recipient in a nursing home is

their fidelity to a promise made to themselves or their family member. One daughter,

recalling her experience with her father's inadequate care in a nursing home, stated: "But

I cannot, I cannot put my mother in a nursing home, after seeing my father, I have

promised her that as long as I am physically and mentally able, I will take care of her."

Even when nursing home placement was considered, it frequently was rejected as

a choice by the caregiver. One caregiver felt that a nursing home would not be able to

meet the individualized needs of her mother:

And we even had to buy satellite, so that this way she can watch the Arabic
stations. She understands the Arabic language, and hears the Arabic music, you
know. So when we sit her in the living room, you know, she would be listening to
the Arabic music and she would feel like, kind of also, that would never be
provided in the nursing home.









Still others see nursing home placement as acceptable only when they are no longer

physically able to care for the care-recipient:

Every time he mentioned a nursing home, I just said "forget it," I mean it got
where you don't mention that to me any more. I'm not going to say I won't, 'cause
I mean if I COULDN'T take care of him, but as long as I'm able, I love him, I
know what he needs, I'll hold on.

Often, the statement by a health care professional suggesting nursing home placement

was the triggering event for families assuming the caregiving role.

Choosing to Provide Care

Without exception, each participant in this study, when asked if they freely chose

to give care, or were they forced to do so by other factors, replied that they had freely

chosen. A critical theorist might argue that these caregivers were indeed forced to choose

to give care, forced by gender, by role, by the health care system. It is true that these

caregivers did not seem to be aware of the cultural or gendered imperatives to provide

care, and in the critical theorist view, these imperatives might be considered as

oppressors. Classic critical theory would then argue that these families should be

liberated from the oppression of being forced into the caregiving role (Kincheloe &

McLaren 1994). Yet, family after family stated that they would assume the role again if

faced with the same situation. Only one caregiver, who viewed her role as personally

oppressive, but her choice to assume it as voluntary, vowed that she would never

become a caregiver again. In this instance, the caregiver and care-recipient (her mother)

had long standing disagreements in their relationship which seemed exaggerated during

the caregiving process.









Paying the Price

The decision to provide family care was not without cost, however. Caregivers

reported giving up their jobs, homes, cars, spouses, lovers, and their future financial

security. A mother of two toddlers remembered:

I've put a lot of things on hold, I've gave up a lot of things to be able to take care
of my baby. I gave up my house, I gave up my car so that I would be able to take
care of my baby. I had my own house, my own apartment. I have tried to work,
but he has been so sick that I haven't been able to. But, I mean, I wanted to bring
my baby home, so I had to do something to take care of him... It was a tough
decision, it was a very hard decision. And the baby's father was totally
disagreeable with my decision. He did not want the surgery. He has chosen to
walk away from the baby. His mother and father and stepfather are very
supportive, but he's not, he's chose to walk away. We had problems before the
baby was born, so he's chose to walk away from this baby. It's hard 'cause we've
known each other for a long time. And OK then, you do whatever you got to do,
but I'm the mother here and I'm going to make the decision. He didn't give me a
reason. He wouldn't even talk to me about it. He wouldn't even come three weeks
ago when the baby was so very sick And I talked to him about a full code
decision, and he said "you know how I feel about it".. well, can we at least talk?
And he said "no," he didn't want to talk. So ... We tried to work things out about
a month after the baby came home, but it just didn't work. We tried, but it just
didn't work. He did train for like 30 minutes.. .but you know, I've learned to deal
with it, being a single mom. A sick baby, with the other kids... it's something I
gotta do.

Mothers aren't the only caregivers who have sacrificed themselves to give family care.

An adult daughter recalled bitterly:

I've given up my life! Literally. I was seeing a guy when I first started living with
her. And she thought that was terrific until we started going out a lot. Now, you
see, when I first moved in with her, she was still able to do a little bit. And, then,
uh, she'd pitch such a fit, I mean a royal fit, because I wanted to see him. And he
got on his way, and I'm glad. No, I can't even have a normal life. And he got on
his way, and I'm glad. [repeating] No, I can't even have a normal life.








63
Each caregiver in the study, however, resolved to continue caregiving as long as

they were able, or until the care receiver either recovered or died. The personal cost of

caregiving did not diminish their commitment to the role.

Summary

The chapter described the basic social problem of Doing What You Gotta Do.

Caregivers viewed caregiving as their duty, although some considered the duty a burden,

others, a privilege. Caregivers, having assumed the caregiving role, also assumed

additional caregiving tasks as they become necessary. Once the role was assumed, there

was an implied obligation to continue to integrate additional responsibilities. Caregivers

do what they gotta do.













CHAPTER 5
BECOMING A "LAY NURSE"


This chapter discusses the basic social process, Becoming a "Lay Nurse," that

assisted participants in this study to address the problem of Doing What You Gotta Do.

The language, work and behavior of the family caregivers demonstrated their gradual

assimilation of a nursing role into their new, developing identities as Lay "Nurses."

Heretofore unarticulated as a silent process for family caregivers, the concept of "lay

nurse" emerged early during analysis of the data. In this chapter, the evolution of family

caregivers to "lay nurses" is discussed.

The concept of role is a useful one for understanding the process of becoming a

"lay nurse." Conway described role theory as "a collection of concepts and a variety of

hypothetical formulations that predict how actors will perform in a given role, or under

what circumstances certain types of behavior may be expected" (Conway 1988, p. 63).

The word role, in everyday language, is frequently used to describe a form of tacitly

understood deception. Viewers of a film or play understand that the individual playing

the role of a nefarious villain is simply a performance artist. The audience suspends their

understanding of the actor as an individual who is being paid to appear on stage for the

duration of the show. In effect, the audience suspends its conception of reality. The word

role, when used by social scientists, however, has a totally different meaning. Hardy and








65
Hardy (1988) noted that many definitions of role exist, but defined role as "expected and

actual behaviors associated with a position" (p. 165) in their comprehensive work: Role

Theory: Perspectives for Health Professionals. They also defined role expectations as

"position-specific norms that identify the attitudes, behaviors, and cognition required

and anticipated for a role occupant" (p. 165). These definitions will be used for the

terms role and role expectations for the remainder of this paper.

Role theorists have described the relationship between roles and social structure

from two perspectives, functionalism and symbolic interactionism (Conway 1988).

Functionalists, such as Parsons and Durkheim, believed that roles exist as social facts,

and are integral components of social structure. The nature of the role is prescribed by

the social structure (Conway 1988). Symbolic interactionists, on the other hand, believed

that individuals create role as an interpretative response to social structure.

Sarbin and Allen (1968), symbolic interactionists, argued that roles serve as

connections or bridges between the individual and the group, as well as between

personal history and social structure. In caregiving families, assuming the role of a "lay

nurse" became a means to connect themselves as caregivers with their family members

as care receivers. The way in which they carried out the role was informed by both their

personal and family histories and shaped by their encounters with individual health care

professionals and the social structures of organized health care. One system of analysis

used to study roles is dramaturgy. A dramaturgical perspective, a useful way to describe

role enactment and to illustrate role theory, will be used in this paper to explicate the

family caregiving process.









The Dramaturgical Metaphor

Dramaturgists, Goffinan, Sarbin and Turner, a subgroup of symbolic

interactionists, used a theatrical metaphor, labeled dramaturgy, to describe social

interaction and role (Hare & Blumberg 1988). The use of a metaphor can help to clarify

relationships between and among the various components of a social interaction. The use

of the dramaturgical metaphor as a descriptive device in this paper does not imply that

what occurs in family caregiving is consciously staged for the benefit of an audience or

that it constitutes a tacit deception.

The word "performance," when used by the dramaturgists, is used to describe

social role enactments (Goffinan 1959; Hare, et al. 1988). Goffman (1959). further

divided performances into symbolic vehicles called fronts and personal fronts. Fronts

include settings and props. These expressive devices reinforce the performance to both

the actorss. and the audience. The fronts are ordinarily stationary, that is, the actor must

enter into the front area to perform the role. Personal fronts include variables such as

demeanor, speech patterns and physical characteristics and are manipulated to make the

performance more believable, or to make the actor appear more sincere. The stage

directions and dialog enacted by the family caregiver serve the function of a personal

front, allowing the family caregiver to be viewed credibly by both themselves and their

audience. The assimilation of the role of "lay nurse" into one's identity constitutes a

basic kind of identity work. It is, in the dramaturgical sense, a performance. The family

caregiver creates, sustains, and manages his/her new identity by employing a set of

behaviors and activities. Oleson and Whittaker (1968). described the internalization of








67
the role of nursing into a student's identity as involving "the individual's recognition of

the identity within himself and the non-deliberate projection of himself in its terms (p.

247). It is no different for the family caregiver who has begun to identify her/himself as a

nurse. Dramaturgy is a perspective that will be used to describe the settings and

relationships within which this identity work is accomplished.

Front and Back Stages

Dramaturgists divide the settings in which performances occur into front and back

stages (or regions) (Goffminan 1959; Hare & Blumberg 1988). Front stages are ordinarily

readily accessible to the audience, back stages, however, are private regions. Performers

can forego some aspects of their performance when in a back region. Audience members

usually are admitted to the back region only by invitation. In an ordinary home, public

areas such as living rooms and parlors constitute front regions, areas such as the

bedrooms and master bath, where intimate activities are performed, function as back

regions. In the homes of family caregivers, the lines between a front and a back region

frequently are blurred. Sickness, typically a back stage activity, moves to the front stage.

The Setting

The family caregivers in this study worked within their homes, homes that had

been modified to facilitate care and to provide for the comfort and safety of the care-

recipient. Both subtle and major adaptations were made in the home environment. Each

family integrated medical paraphernalia into natural family settings such as dining and

living rooms.









Major changes were sometimes made to the structure in order to facilitate care.

One caregiver described the effort to modify an existing bathroom to accommodate a

wheel chair:

We knocked the doors out. We knocked the walls out. We worked around the
plumbing. You know what we did? We knocked out the wall, enlarged the door,
put in a new door, and took part of my dad's closet from the bedroom. The
plumbing was in the middle. So we built kind of a pole around the plumbing, and
put wallpaper on it. It looks kind of like a Romanian house, it was Roman style.
So we had a pole in the bathroom, and we were able to enter.

The changes were not always made just to accommodate a wheel chair, or provide for

access. Sometimes the changes were for the emotional well being of the care receiver as

well as for more pragmatic reasons:

[We] wanted a place where he could move about, and feel as if it were his house,
too. There was no question that we were going to take care of him. We didn't
have any options as far as we were concerned about that. So, yes we built this
house for him with the wooden floors, and the open spaces, and the wide halls,
and so-forth, so he could get around and so-forth.

Even when major structural changes were not required, there were always

struggles, to move an unwieldy IV pole across a plush carpet, to find a way to hang IV

bags in the bathroom during a morning bath, to squeeze between a king-sized bed and

the wall to help a disabled spouse up to the bathroom. The normal day to day life of the

family was integrated with the technical demands of caregiving. The homes were

cluttered with visible reminders of sickness and disability, of the transformation of

spouses and children into patients, and wives and mothers into nurses.

The Props

Family caregivers acquired durable medical equipment such as hospital beds,

bedside commodes, infusion and feeding pumps and wheelchairs. Equipment of this type









was usually identified as essential by medical and nursing professionals, and was

frequently, but not always, paid for by third party payers. Medical and caregiving

supplies intruded into ordinary household spaces. In one home, a diaper changing table

stood in the comer of an infant's bedroom. Arranged neatly, and by category, were the

common supplies for changing diapers, ointment, disposable wipes and pads. These

items shared space with bottles of sterile saline for irrigation, hydrogen peroxide for

tracheostomy cannula cleansing, syringes and numerous bottles of medication. An IV

pole, gastrostomy feeding pump, suction machine and Ambu bag were neatly stored in

the area between the changing table and the baby's crib. Caregiving props were not

relegated only to the care area. One mother recalled: "We had to put his TPN

[intravenous nutrition] in the regular refrigerator, and still try to keep some food in

there." IV poles, feeding pumps and suction machines share space with television sets,

stuffed animals and easy chairs; three liter bags of Parenteral nutrition were placed next

to bread, milk and eggs.

In addition to the prescribed medical devices, families often purchased other

equipment to facilitate caregiving. Medical accouterments, such as tympanic

thermometers, stethoscopes, sphygmomanometers, shower chairs, medication organizers

and three ring binders for the organization and storage of medical records not only made

caregiving easier, but reinforced the newly assumed role of a nurse and enhanced the

credibility of the caregiver to both themselves and others.









The Ensemble

Hare and Blumberg (1988). described the roles of director, playwright, producer,

protagonist, and antagonist. These labels will be used for the following descriptions.

Producers. In the theater, most actors exert little or no control over the production.

Producers, playwrights and directors hold the power to control the performance.

Producers, according to Hare & Blumberg (1988),

Provide funds and set the overall guidelines for action. The influence of the
producer may not be apparent to the audience, but financial limitations may well
have determined the size of the cast and the elaborateness of the setting (p. 79).

Producers of the family caregiving performance are third party payers. In this research,

in all but one family, the third party payer was either Medicare or Medicaid. These will

be discussed later under the heading Social-Structural work.

Directors and Playwrights. Physicians served as both playwrights and directors for

family caregivers. They provided instructions and prescriptions, expecting that they

would be followed without question. Families were ordered by their directors

[physicians] to provide care at a frequency and intensity that is similar to that in an acute

care hospital: tube feedings every four hours, IV antibiotics around the clock, and

breathing treatments four times per day. They initiate major changes in the script for the

caregiver. Like directors, physicians corrected or chastised the caregiver if the caregiver

deviated from the prescribed script. One mother described the physician's reaction when

she made an independent adjustment to her child's ventilator: "She said "I really need to

talk to you about something very serious." I said, "Oh-oh, what's going on?" "Do not

ever, ever touch the machinery." When the caregiver performed as expected, the










physician gave praise: "Dr. B. Told me said that I would be the ideal nurse, if he was

ever sick, I could take care of him. He told me I could go work in the office if I wanted a

job!"

Cast. Every drama needs a cast. In family caregiving, the star, (protagonist). is the

family caregiver. The primary member of the supporting cast is the care receiver, who

may function as another protagonist, or as an antagonist. Protagonists work in concert,

antagonists work at cross purposes with the star protragonist. One caregiver and her care

receiver clearly were antagonists:

I believe that if it was not my mother, if it was somebody else, I probably
wouldn't take it as personal as I do, but she still treats me as if I'm 12 years old,
and wants to be in control of everything. We have some good days, when she's no
problem at all, she's really not a problem. She still wants to do everything her
way, but her way's not the best way. But she doesn't think that I have enough
sense to know the difference. She really believes that.

Another caregiver, a wife, described working with her husband, the care receiver as a

co-protagonist: "Together we figured out how to handle the balls [wound drains] so they

wouldn't drag and hurt. He designed a sling that he wore around his waist." Secondary

caregivers and health care workers may assume either supporting roles, or fulfill the

function of the audience.

Audience. No drama is complete without an audience. The audience may appear

to observe the drama passively, but also functions as an critic of the production. The

expectation is that the audience will criticize, reward, and punish the actors. The

audience gives affirmation and positive feedback through acclaim and applause, as well

as punishment through boos, hisses, and cancellations. Occasionally, members of the








72
audience are called to the stage to perform. Following their performance, they return to

their observer role.

To symbolic interactionists, social productions are reflexive activities, the actors

are not only protagonists or antagonists, but audience as well. When the actors reflect on

the meaning of their production, they become observers and critics. One young mother

described misinterpretation of her baby's fever, resulting in a respiratory emergency:

One day he had a really high fever, it was like a 102 or 103. I didn't think
anything was wrong. I thought he was just teething. I felt really bad, I should have
took him the day before, but I really didn't think it was anything. I didn't feel like
a responsible person. It'll be different next time.

The cycle of meaning making, interpretation and evaluation contributes to the actor's

construction and modification of reality.

The Script

An integral part of any performance, whether it is a role enactment, or a stage

performance is a detailed script, outlining stage directions and dialog. This detailed

script is one of the ways the "specific position norms" referred to by Hardy and Hardy

(1988). are delineated for the performers. Actors study the script so that they can give

performances that appear natural, realistic and believable to the audience and director.

Family caregivers have to learn a script, too, but they do so on their own, with minimal

formal or informal assistance. Early in the caregiving process, family caregivers

followed the script precisely, performing each task, assessing each response or

administering each medication exactly as it was taught to them. As they became more










proficient "lay nurses," family caregivers began to modify and enhance the script,

adapting it to their needs and those of their care-recipient:

I know what the books say, but I know that if I apply the suction at the top [of the
tracheostomy tube], before I go down, I'll get more out. It doesn't make sense for
me to be pushing those secretions down the tube.

When skilled and experienced actors read a script, they may ad-lib, employing

communication structures designed to reinforce the role presentation and sustain the

created social reality (Goffinan 1959 1983). Family caregivers who reconceptualized

their identities as nurses used sophisticated and technical language. One mother

described a Retinopathy of Prematurity study in which her daughter was enrolled:

They're studying whether high oxygen or low oxygen; and it's a randomized
study. If they fall into high oxygen, where they want to saturate 97 to 99%, or
whether they saturate between 95% and 97% [low oxygen]. And if she exceeds, or
does not fit within those limits, the alarm goes off. Now, at the hospital, they had
the ability to adjust her 02 accordingly. If she wasn't saturating enough, they
would give her a little more. But when she came home on 02, it was just a straight
V2 liter.

By adopting the idiom of the professional nurse, by "talking the talk," this mother

effectively sustained her performance as a skilled caregiver, as a "lay nurse."

The stage has been set and the participants have been identified for family

caregiving of patients with complex needs. In the next section, the enactment of the

social process of becoming a "lay nurse" will be discussed.

Learning the Script

Becoming a "lay nurse" has three overlapping phases, Learning the Script. Doing

the Work, and Embracing the Role. Occasionally, the margins between the phases

become slightly blurred. Family caregivers learn to "talk the talk" and "walk the walk,"










the script of a "lay nurse," and how to perform numerous tasks for daily patient care.

Over time the caregiver embraces the role of lay nurse, integrating it into her/his identity.

This is all identity work.

The process of becoming prepared to enact a specific role in a social system is

called socialization. Brim (1966). defined role socialization as: "[The] process by which

persons acquire the knowledge, skills and dispositions that make them more or less able

members of their society" (p.3). Other authors have described the professional

socialization of medical students (Broadhead 1983; Hafferty 1991), academics (Tiemrney

& Bensimon 1996), and nurses (Goodman-Draper 1995; Olesen & Whittaker 1968).

Learning how to behave, what language to use, and how to carry out role specific

tasks is an integral part of socialization to any role. Socialization into a role may occur

informally or in a planned, structured fashion. Young children are socialized informally,

learning language and behavior primarily by observing others. Professionals are

socialized into their roles both formally and informally. Some aspects of role

performance are taught in the classroom, but a large part of socialization into a

professional role, such as that of a professional nurse, occurs outside the classroom

setting. Nursing students quickly adopt nursing lingo and effect behaviors and

mannerisms that identify them as nurses. Much of this information is passed on to them

by students who are more advanced in the program, by interactions with faculty, and by

observation of professional nurses (Olesen, et al. 1968).

Reference groups are groups of individuals who occupy the same role as the actor

(Hare, et al. 1988). Student nurses turned to the reference groups of other students and of










professional nurses for some of their role socialization. Family caregivers in this study

ordinarily had no reference groups to model the caregiving role, so they turned to the

most similar reference group they could find; they turned to nurses and other health care

providers to model desirable behaviors. As family caregivers became socialized into

their new role as "lay nurses,'" they learned a new language and skills; they learned a

new script.

Another construct that has been used to describe the process of assuming a new

role is that of role acquisition. Originally described in the thirties, role acquisition was

considered to be a one-step event, where an individual assumed a new social role, and

conformed to societal role expectations. Thornton and Nardi (1975). argued, however,

that role acquisition was actually a social process that included complex interactional

learning as well as conformity to role expectations. Role expectations arise from many

generalized sources, including the mass media, society at large, and other individuals

enacting the role. Thornton and Nardi noted that individuals do not always conform to

these expectations, but instead, modify their role enactments based on context and

interactions.

Learning the Script is the anticipatory socialization phase of the process of

becoming a "lay nurse." During this phase, anticipatory socialization occurs (Goffinan

1961; Israel 1966; Merton 1957; Thornton & Nardi 1975). During anticipatory

socialization, the actor (or role incumbent), begins to learn directly and indirectly about

the new role. Their role understanding may be narrow, and sometimes stereotypical. It is

frequently incomplete. This anticipatory socialization phase is analogous to rehearsing










before a performance in the theatre. Patricia Benner, in her seminal work, Novice to

Expert (1984). describes this early phase in socialization as the Novice phase. During

this phase, the new nurse (or student), relies on concrete rules to direct her/his practice.

The rules are context free. The novice has not yet acquired the skills to flexibly modify

the rules. Benner (1984), who based her work on Dreyfus and Dreyfus (1984). and

Heidegger, when describing how nurses acquire clinical knowledge during professional

socialization, labeled theoretical knowledge as "know-that" and practical knowledge as

"know how." The family caregivers, at this stage of their caregiving performances also

depended on the rules and instructions they had been given. They were concerned with

developing practical knowledge, "knowing how." Theoretical knowledge, "knowing that,"

came later.

Learning How to Provide Care

The earliest nurses learned their profession from speaking with, listening to and

observing older, respected nurses in their community. Today, nursing education includes

both formal classroom preparation and less formal learning by watching and imitating a

more experienced practitioner. As they embarked on their journey to becoming "lay

nurses," family caregivers learned to administer complex care in a variety of ways,

including some formal, planned learning experiences and others, informal experiences.

Caregivers learned from health professionals, and from their own experiences.

Learning occurred both in the hospital and in the home. Information was offered

by staff to caregivers, requested by caregivers from staff, sought from other sources by

caregivers, and absorbed sometimes by caregivers during their observations of care.








77
Student who are learning to become professional nurses during the earliest part of

their academic programs focus on "knowing how" to do procedures. They are concerned

more with correct performance of the task at hand than with understanding the

underlying principles and concepts. Students learned the tasks by watching videos and

film strips, reading instructions, and observing experienced faculty and staff perform

them. In the same way, family caregivers were taught through conversations with health

care professionals, videos, written patient education material and demonstration. Task

mastery is assumed when the learner can successfully repeat a procedure as

demonstrated, or perform a "return demonstration." A key difference between the

socialization of student nurses and "lay nurses" is that the learning experiences of

students take place over a long period of time and are carefully designed to enhance

student learning. Educators know that both time and readiness are essential prerequisites

for learning. The families in this study, however, did not have the time to become ready

to learn, or, even if ready, sufficient time to learn. They were catapulted into the role of

"lay nurse." The help available to them varied widely in both quantity and quality.

The Myth of Discharge Planning

Opportunities to learn about their new roles as family caregivers can be provided

to family members through the efforts of a discharge planner. For some families in this

study, opportunities to learn were provided by discharge planner; for others, they were

not.

One caregiver in the study was the first family member to take home a ventilated

infant from a major Midwest medical center. That mother, together with her spouse and








78
hired caregivers, participated in a week long program at the university affiliated hospital

designed to prepare them for caregiving. This mother mused:

Now, so many kids go home... they don't have the support that we did, they
don't get the equipment we had. I think they overdid it for us, but it is better to be
too cautious. I think there are going to be problems in the future because they are
not planning it as well as they used to.

At the same period in time (1982), at another major medical center only 400 miles

from the first, a young adult with quadriplegia was discharged home to the care of his

family:

We had very little help from them in sending him home. And when he came
home, we were given some help from a home health care nurse to instruct us how
to handle TPN. And that's about all the help we were given. We did not know
how to transfer R., we did not know how to care for him. Truly, we had not been
given any help as far as his quadriplegia was concerned. This [the resulting stress]
almost broke up our family.

Both instances of discharge planning, one detailed and lengthy, the other wholly

inadequate, occurred many years ago. It is not uncommon to hear the mantra from nurses

"discharge planning starts at admission." Although 15 years have passed, discharge

planning continues to be inadequate or absent. A wife described the 1995 discharge of

her husband after a craniotomy for a malignant mass:

They [at the nurses' station] said yes, the doctor had discharged him that morning.
Again, I questioned: "M. has been in the bed for a full 7 days, and has not even
been allowed to walk to the bathroom, and you're sending him home? How do
you expect me to handle this man? He's 6'4." And they said, well, they didn't
know, but he was to be discharged. And I said "I'm not taking him home until I
know that he can walk, and that I can handle him." So, they got physical therapy
up. They had M. get up from his bed and walk a few steps in his room to prove
that he could walk. And he walked, and they said, OK, fine, and they sent him
home.








79
Another caregiver, who is also a Registered Nurse, described the discharge of her mother

from a specialized rehabilitation facility. The mother, after sustaining a stroke, required

total care, and was unable to perform any activities for herself.

Dr. H. said "There's not a whole lot we can do, we're not getting anywhere. She's
about the same." and I said "Not a problem, I'll take her home, just when is she
going?" He told me: "Tomorrow." And I went, "uh, uh, wait a minute now, can
you give me at least 48 hours to get everything situated and ready?"

One mother of a premature infant struggled to get assistance for her daughter. Like many

families, this family was caught between having too many assets to qualify for public

assistance and not enough to provide the required care for their infant. She finally linked

up with a federally funded community-based agency that offered multiple services to

children with disabilities. Her referral source was not a social worker, not a nurse, but a

fellow shopper at Wal-Mart.

Learning by Watching

Caregivers reported that much of their learning about caregiving tasks occurred as

they observed others. "I watched, I watched all the time, I still do that. People don't

understand how much we watch, but I watched all the time, and I absorbed everything

they were doing for my son." and "We stayed near the nursing station, and I just sucked

in the information." Other caregivers noted that their constant presence, or their stated

interest resulted in being invited to learn by the nurses.

They taught me a lot about that [preventing aspiration]. I think there's a lot of
things the nurses taught me. If I showed an interest, they would certainly say, "we
do this for this reasons for that reason, and be sure to do this and not do this."
They were really sweet, like I said. I was always there, and they were wonderful to
me, because they knew I would have to take care of him at home.










Sometimes, however, caregivers observed and learned tasks that were never

intended to be performed by them. One mother of an infant in NICU (Neonatal Intensive

Care Unit). had observed the responses of nurses and respiratory therapists to ventilator

alarms. When faced with an alarm, and no professional nearby, she acted on what she

had learned by watching:

I was there so much that I knew that all they would do was turn the concentration
of oxygen down [in response to an alarm], so I thought, that needs to be done, and
the nurse wasn't around, and my baby was getting too much oxygen, so I turned it
down. Of course, I looked around, you know, to cover myself before I did it,
because I knew that I probably shouldn't, not probably, I shouldn't be.

Learning by watching occurred not only in the hospital, but also in the home. Caregivers

watched and learned from home health care nurses, physical therapists and medical

supply personnel. Sometimes, professionals in the home performed tasks and procedures

differently than what had been learned by the caregiver. As novice caregivers, family

members had difficulty watching caregivers deviate from the prescribed script:

Um, I was taught several different ways to clean the baby's trache after you
change it. I was taught to use V vinegar /2 water, or use V2 peroxide, / water, and
I had been cleaning it in vinegar and water, and she [the home health nurse]
thought that was very wrong, so she said I should be using peroxide, V2 water,
and so she wrote, like two days later, that I had... I had changed the trache earlier
that day and had it soaking in vinegar and water, and she come in and charted
"mom was previously instructed to use peroxide and water, but still insists on
using H20 and vinegar." But that's what I read in the book, and that's what they
said in the movie, so ..I was just doing that, because that's what I wanted to use,
and she just made me feel like I wasn't taking care of my baby right, just made me
uncomfortable.

Later in their caregiving careers, caregivers watched not to learn, but to monitor the

work of professional caregivers.










Learning by Trial and Error.

No matter how much formal and informal learning went on in the hospital, and in

the home, however, not all problems could be predicted. Sooner or later, each family

found themselves alone at home with an unanticipated dilemma. These "baptisms by

fire" forced them to become even more skilled when delivering care. The families in this

study taught themselves to turn and transfer patients, prevent reflux through vented

nasogastric tubes, support wound drains to prevent unnecessary tension, modify IV

poles, handle Hoyer Lifts (a complicated patient transfer device), substitute large

reserve oxygen tanks for small portable ones, and empty catheters and ostomies without

spillage. In some families, disputes arose among family members, as each developed his

or her own technique to cope with a specific care problem:

I remember we argued about whether we should put powder on R. in his groin
area to keep him from breaking out. And he was sweating, we argued about
whether we should use salve. And we would have big arguments, and whoever
was taking care of R. that morning would do it their way. The family was just
dreadful! And we took turns giving him a bed bath, as best we could...

There was little or no time allowed the family caregiver to devote time to learning

and skill mastery prior to becoming responsible for caregiving. The caregivers frequently

learned about the work while doing the work

Thornton and Nardi (1975). noted that congruence between a role incumbent's

expectations about the role and their enactment of the role is directly related to how

smoothly and quickly they can adjust to new roles. The importance of the first phase of

becoming a "Lay Nurse," "Learning the Script," cannot be overemphasized.










Doing Nurse's Work

The words lay and professional may be used to differentiate two levels of function

or status within a group. The lay midwife and the Certified Nurse Midwife, and the

clergy and laity in organized religion are examples of this form of stratification. Lay

participants in an activity usually have less formal preparation for the role than do

professionals. They are not compensated, and are not afforded the higher status

associated with being a professional. They are called on to perform some, but not all of

the functions of a professional. Boundaries exist between professional and lay activities.

Some of the boundaries are clearly defined by rule or statute: lay midwives do not

prescribe medication and lay ministers do not perform marriages. Other boundaries are

less formally defined, but are inflexible, nonetheless. Lay midwives do not affiliate with

physician practices, and the laity do not wear clerical garb. As the caregivers began to do

the the work of a nurse, they also began to learn the boundaries.

Traditional functions of nurses included providing for the physical and comfort

needs of their patients. In today's complex health care systems, nurses also have to

become experts at dealing with ancillary health professionals, physicians, insurance

companies and regulatory agencies. The caregivers in this study were also responsible

for similar kinds of work, they cared for and comforted their family members, as well as

filing insurance claims, paying the bills, arranging for household repairs and acquiring

necessary supplies. The caregivers took on the work of a nurse, and became competent at

performing the basic tasks of caregiving. Although they had not yet acquired the depth of










knowledge, skill and understanding associated with expert caregivers, they became

effective and efficient workers.

As caregivers move to independent caregiving, in the home, they take on

responsibility for doing the work they have learned. During the formal and informal

phases of Thornton and Nardi's (1975). model of role acquisition, role incumbents

become performers, carrying out the work of the role. The rehearsal is over. The

performance, over time, becomes more and more plausible, skills are honed, routines are

established. During the earliest part of these phases, actors do not significantly modify or

adapt their performances, they become competent at them. As they become more expert,

they begin to adapt their caregiving practices based on contextual issues and personal

experiences. Benner's (1984). stages of beginner and competent are most analogous to

this phase of the process of becoming a lay "nurse."

The Work of Complex Caregiving

The work of caregiving required not only physical skills and energy from the

caregiver, but required emotional and spiritual skills and energy as well. Caregivers

worked to maintain or improve the health status of their family members, and protected

them against complications. They also worked to normalize their medicalized home and

family, protect the individuality and dignity of their care-recipient, and carry out the

common day to day activities of maintaining a home. The care provided by these family

caregivers was not only custodial in nature, the simple needs of an individual to eat, to

drink, to eliminate waste, to breathe and to move were met using complex technology.

The family caregivers in this study maintained central IV lines, administered Total








84
Parenteral Nutrition (TPN), IV antibiotics, IM intramuscularr) injections, investigational

drugs, and tube feedings via both gravity and pump, and measured blood glucose levels.

Family members were also responsible for performing sterile dressing changes,

emptying and monitoring wound drainage devices, measuring blood glucose levels, and

maintaining gastrostomy, tracheostomy and colostomy sites. They also monitored and

inserted urinary catheters, suctioned and changed tracheostomy tubes, and connected and

disconnected their loved one to a mechanical ventilators. Some detailed descriptions of

family caregiving of patients with complex needs follow:

Maintenance Work

Much of the work of the family caregiver is what Gubrium (1975). refers to as bed

and body work. Family members had to be bathed, positioned, transferred and fed. The

purpose of this work was to maintain health, not to heal or restore. Even these seemingly

simple tasks could be complex and involved. When performing the work of maintaining,

the caregiver is doing what the care receiver would ordinarily do for themselves. They

provide this care using technology and specialized knowledge. Performing for patients

what they cannot do for themselves was one of the defining characteristics of nursing

identified by the early nurse theorists Wiedenbach and Henderson (Tomey & Alligood

1998).

Nutrition. One of the most fundamental of human needs is the need for nutrition.

All caregivers, whether they were mothers of healthy children, caregivers of the frail

elderly, or caregivers of those with complex medical needs, concerned themselves with

the provision of nutrition to their family members. Without food, muscle wasting,








85

starvation, and death may occur. Caregivers in this study provided food through ordinary

means, accommodating, when possible, the preferences of the patient:

She's really gotten heavy... that's [eating] all she's got left to do. She can't
move, so I let her eat. I let her eat anything that she can eat. I don't worry about it.
That's one thing we keep in the house, food, and food that she likes.

For some families, the inability of a patient to tolerate oral fluids and food

resulted in a hospital admission. For others, it meant that food and fluid would be

administered via unnatural, technologic means. Their family member's daily nutritional

needs were met through artificial tubes inserted into the stomach through the nose and

throat, or through the abdominal wall, or intravenous lines placed in the large veins of

the body, close to the heart. This medicalized version of the natural function of eating is

one of the elements that contributed to the perception, by the caregiver, of care as

complex. Spalding and McKeever (1998), in their study of mothers caring for a child

with a gastrostomy tube quoted one mother:

It [gastrostomy tube] was the most horrific, outdated, terrible thing to put in a
child. It was an awful looking thing and the most awful thing to deal with that we
ever, ever experienced in our lives. It changed our lives. It had such an impact, it
was so permanent for her, it was a hole in her, it was like this gaping hole in her
abdomen. I mean, the way I had to touch her, treat her, and position her changed.
Everything changed for us. We didn't see any kind of immediate improvement in
our lives because of it. It made life more stressful, definitely stressful (p. 240).

The provision of food and fluid held significance for family members not only as a task,

but also as a life saving action

I said, "Dr. M, I know my mother may not make it through the surgery," I said,
"but she cannot go on like this, because she will die anyway on the little amount
of food we are able to get into her between me and the [hired] caregiver" He
looked at me and said"You've thought this out... "I said "I've got no other










choice" so we put the PEG tube in, and she started gaining weight. You can't
starve a person to death.

Feeding Tube Management. The insertion of a feeding tube brought about new

problems for the caregiver. There was a new wound to manage, and new technology to

master:

The first time that they brought the Kangaroo [brand name of feeding pump] out
to me... I had the worst time with it! I just wanted to throw it out the door! When
I poured the milk [formula] in, it went too fast and filled up the little tube and it
kept beeping on me, and I didn't know what to do.

Sometimes the care-recipient cannot tolerate the prescribed formula with resulting

diarrhea or constipation requiring adjustments in the formula itself, the dilution of the

formula, and the rate of administration. When present, the feeding tube is also frequently

used for the administration of oral medications. Between medication administration and

feeding, some families needed to repeat the entire process of disconnecting, flushing,

instilling, flushing and reconnecting six to nine times per day.

Hydration. The consumption of fluid is essential to human life. In chronically ill

individuals, fluid needs are often increased. Without fluid, dehydration leading to renal

failure and death is possible Care receivers who have difficulty eating or swallowing, or

tolerating food or fluids were particularly challenging.

Plus, trying to get enough liquids in him, 'cause he was not drinking or eating
anything all by then, nothing went in the mouth, and he just, you know, you'd
have to put it through the tube, and anytime we put something through those
tubes, pretty much he couldn't tolerate it. So, basically every time I brought him
home I never could get enough liquids in him. So, he ended up back in the
hospital because of the food, and the dehydration.










In Spalding and McKeever's 1998 study, one mother described her futile efforts to

give fluid to her infant:

I finally called up the doctors and said.".. I can't stand it any more." Because, I
guess the straw that broke the camel's back was when I spent the whole day
feeding her in the presence of witnesses... at the end of a 10-hour stretch I got in
4 ounces. She threw it up, and some of the stuff that she threw up I recognized
from 8 hours earlier. I thought. "I just cannot keep her alive this way, I just
cannot, cannot, cannot" (p. 239)

Caregivers were acutely aware that failure to provide fluid may result in death for

their family member. In the case of an individual with a high (fluid). output colostomy

and impaired gastrointestinal absorption, the caregiver had to continually measure total

fluid intake and urine output. If the urinary output dropped (an indicator of dehydration),

the caregiver then made the judgment to administer additional IV fluids to her son. "We

always keep extra IVs on hand." She cried as she recalled that when she was new to

caregiving, she had not yet acquired the skill to identify her son's needs for additional

fluid, resulting in the following harrowing experience:

We took him to a picnic at the one and only relative we had in town. we had in
town. And it was a day like today, the very high 90s and we were outdoors. This
was fine for everybody but R. He began dehydrating, and we did not know this.
And being a quadriplegic, he can't feel anything, other than he just doesn't feel
good. And we would get him in periodically to the house, but he didn't want to
make waves, he didn't want to be treated differently than anyone else at the
picnic, and he endured much longer than he should of. And by that following
night, we were rushing him back to the hospital. He was severely ill.

Intravenous Fluid Management. The administration of intravenous fluids and

medications to a hospitalized patient is commonplace. For some of the care-recipients in

this study, the only way to obtain an adequate caloric intake was to receive the necessary

carbohydrates, proteins, fats, water and electrolytes intravenously through a large










catheter inserted through the skin into a large vessel near the heart. Sometimes,

following an infection, it was necessary to administer antibiotics intravenously, as well.

IV antibiotics were administered around the clock at four to eight hour intervals.

Occasionally, several antibiotics, prescribed at different intervals, were administered

concomitantly, with one or another being administered every two to four hours. In a

hospital, the role of managing IV therapy is usually reserved to an RN, and occasionally

delegated to a specially trained LPN. The caregiver of a young man who requires TPN

for a nutritional absorption disorder, talked about adding IV antibiotic administration to

her daily routine:

Many times, by now, they treat him in the home with IV antibiotics, which
they've also just taught me to do, so that's one more job, you see, when this
comes along, we have one more thing to do. They [home health agency] sent me
all these Vancomycins, and a second pump, a second type of tubing, and
instructions that if I had any problems, call.

A secondary caregiver, a Registered Nurse, described how her sister-in-law had to add

the administration of IV antibiotics to her already busy routine:

It was staggered in such a way that, I mean like one of the IV antibiotics was
every four hours, and one was every 6 hours, and one was every 8 hours. So they
were staggered in such a way that she really didn't have very much spare time.
And with everything else she was doing, bathing, taking care of his tubes,
watching his drains, measuring things..in the beginning she had to empty them
[wound drains] like every hour and a half.

The knowledge that there are many things that go wrong with this essential therapy

weighed heavily on caregivers:

You cannot leave the patient when he's on a life-threatening IV. I mean, if
something would happen to that IV, you would have to be there to shut it off right
away. I could not leave him because of that.










IVs can complicate care in other ways. One wife, when faced with a

deterioration in her husband's condition elected to transfer him to the hospital in her car,

with an IV running:

And one night we took him back in the middle of the night, we thought we could
get it in the car, but we couldn't get it high enough... it would not run. And then
we had to flush it, you know, with saline.

In addition to the responsibility of dealing with the IV solutions and tubings,

providing IV care also required that caregivers learn how to perform sterile dressing

changes, and become familiar with a variety of IV pumps and devices. When a hospital

or home health agency brings a new device into a facility, training in its use is provided

to all the staff until they are comfortable with the change. Family members could not rely

on such training.

They knew he was going to go home on that [intravenous therapy], so they
started teaching her how to handle the pumps and things in the hospital. But
when we got home, it [the pump] was a different brand.

One caregiver laughed as she recalled being sent a needle-less system to use for IV

antibiotic administration. "They sent us a needle-less system with no information. It just

arrived! Between the two of us [the patient and caregiver], we figured it out." Caregivers

struggled daily with problems such as preventing a new IV pump from alarming every

few minutes throughout the night or positioning a central line so the catheter does not

kink and crack.

Airway Management. A most basic human need is the maintenance of adequate

ventilation and gas exchange. Failure to do so results in death. In this study, two










mothers, one of an infant, and one of an adult, worked actively, on a daily basis, to

ensure that their family member was able to breathe effectively.

N. was an 8 month old child who suffered anoxic brain damage at birth. He had a

tracheostomy in place, and required the frequent aspiration of mucous from his

respiratory tract. His mother had learned to associate an increased respiratory rate,

retractions and a change in color with a potentially obstructed airway. She intervened:

... and he's making a little squeaking noise, like maybe he's plugged, his
trache's plugged. I change his trace, and if that doesn't help, I give him a few
breaths with the Ambu bag, and usually that's good. And sometimes, I'll follow
with the nebulizer treatment... and if that stuff doesn't work, I usually take him
in to the ER or to the doctor.

For the mother of the adult, her interventions were more proactive than reactive,

she described administering three or four nebulizer treatments a day, as well as providing

chest physiotherapy with an electric percussion device. She understood the significance

of preventing respiratory problems, based on her knowledge of his physical limitations:

His lungs were greatly affected, but they always are. He's only got 60% of his
breathing capacity, anyways. 40% is paralyzed. He's only got 60, and on one
side, he's got even less than that, because the lower lobe is partially closed for
whatever reason, scar tissue, probably.

Each of these family members provided respiratory care that is usually limited, in an

institutional setting, to LPNs, RNs, or certified respiratory therapists.

Toileting, bathing and hygiene. Within our culture, caregivers to young children

are permitted, within defined parameters, to view and manipulate the bodies and

genitalia of their young charges. As children grow to sexual maturity, however, they

acquire the right to privacy regarding their own bodies. They are usually not permitted to










view their parents or grandparents in nude or semi-dressed states. When these cultural

norms are violated, adverse effects can vary from embarrassment for either individual or

for both, to accusations of sexual abuse or molestation.

These private boundaries collapsed for the adult caregivers and care receivers in

this study. Adult children found themselves bathing and toileting their elderly parents,

and mothers found themselves providing intimate care to their adult sons. Caregivers

tried to maintain the dignity and privacy of their care-recipients. One wife, when

describing managing her husband's total incontinence, consistently referred to plastic

coated adult incontinent garments, wrapped around the body, and secured with tape, as

"briefs" rather than "diapers." She explained: "I think to call them diapers is demeaning

to B. [her husband]." Culturally prescribed embarrassment regarding elimination was

evidenced by one caregiver who would not bring herself to ask for the assistance of her

adult children with their incontinent grandmother:

For a while, before she got as bad as she is now.... well, she started... wetting
the bed. [She hesitated, and dropped her voice, almost as embarrassed.] Umrn, I
just couldn't ask my girls to come help me. I have two [adult] girls. I could ask
them to come stay the night, and let me go out of town, but I can't do that
anymore. Not while she's wetting the bed... I'm not going to ask them to do
that.

Another caregiving family, with a strong ethnic tradition [Lebanese] that

emphasized concealment of a woman's body, managed to provide their mother with a

tub bath, maintaining her privacy and modesty. The adult son transferred his still clothed

mother to the tub and then left the room. The daughter was then able to remove her








92
mother's clothing and bathe her. The sensibilities of both the mother and of the son were

protected.

Bathing and toileting activities varied from the simple to the complex. For some

families, toileting was as simple as assisting an individual with a urinal, others assisted

with a bedpan or changing incontinent undergarments, and some maintained stomas and

drainage devices. One daughter took the initiative to learn how to change her mother's

urethral catheter:

Then we have a nurse, another nurse, coming to change her [urinary] catheter.
And then, I think, the last 2 or three times, I did it myself. I changed her catheter.
Because we started paying for it. Because they stopped doing that on us, too.
Even that. And I think, why am I paying $100 or $150 for them to come and
change... I know how to change it! So the girl that I hired, it was a nurse, I said:
"Look, I want to do that. Let me do it with you, and you watch me." And I did it
with her. I need help, you know, you can't do a catheter by yourself, you need
help. You need an aide. But the last time I did it all by myself. The last time,
before she passed, I did it by myself.

Another caregiver described learning how to handle an ostomy:

And, handling his, emptying his bags, we didn't have a good system at that point,
in taking care of him, with his colostomy output and his urinary output, so we
had to empty that right on the bed with our own makeshift methods, which no
one had taught us how to go about doing this as they would in a hospital, and no
one had thought about a system that would bring things down to the side of the
bed. We had to figure that out.

Bathing was complicated by the presence of multiple wound drains, stomas, intravenous

lines, tracheostomies and feeding tubes.

Transferring. One of the most daunting non-technical tasks faced by caregivers

was that of transferring care-recipients from bed to chair, chair to car and room to room.

The transferring of patients meets both social and physical needs. Skin integrity and joint




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