Aging Among Women with Disabilities

Table of Contents

CHAPTER 1: INTRODUCTION
STUDY PURPOSE
BACKGROUND
SENSITIZING FRAMEWORK
DEFINITIONS
ASSUMPTIONS
SIGNIFICANCE TO NURSING
RESEARCH QUESTIONS:

CHAPTER 2: REVIEW OF LITERATURE
THE MEANING OF AGING
STUDIES OF AGING WOMEN: LIFE COURSE PERSPECTIVES
STUDIES OF AGING WITH DISABILITY
AGING WITH POLIO/POST POLIO
RESEARCH SURROUNDING WOMEN WITH DISABILITIES
Lives in Time and Place
Human Agency
The Timing of Lives
Linked Lives
SUMMARY

CHAPTER 3: METHODS
RESEARCH DESIGN
METHODOLOGY
METHODS
Participant Selection Strategies
Sample Selection
Sample Size
Recruitment
Protection of Human Subjects
Data Management Strategies
Modes of Data Collection
Interview Questions
Demographics
Life Course Review Table
Field Notes
Modes of Data Analysis
Data Organization
Data Analysis
Bias Control

APPENDIX A: INTERVIEW QUESTIONS

APPENDIX B: DEMOGRAPHICS

APPENDIX C: LIFE COURSE REVIEW CHART

Chapter 1: Introduction

“No matter how much I was admired by others or by myself, there was still much more I had to face. “My Polio” and “My Accident” were not just my past; they were part of my present and my future” (Zola, 1982, p.84).

There are 53.9 million Americans with a disability (Jans & Stoddard, 1999); 28.6 million are women and their numbers are increasing (Gerschick, 2000). The increase is partly due to a longer lifespan for persons with disabilities, which is most pronounced among those aging with a disability since childhood (Campbell & Barras, 1999; Campbell, Sheets & Strong, 1999). For example, the average life span has increased for the nearly 700,000 with cerebral palsy and the almost 1 million polio survivors (Campbell, 1998). Regretfully, their increased life span has been accompanied by health and social problems (Campbell; Harrison & Stuifbergen, 2001).

Women with disabilities experience high rates of poverty, negative stereotypes, high rates of institutionalization (G. Frank, 2000) and increased secondary conditions and co-morbidities with aging (Harrison & Stuifbergen, 2001). These problems are costly to the individual, the family and society. The health risks associated with aging with a disability have prompted the U.S. Department of Health and Human Services to include the removal of health disparities amongst people with disabilities as one of its 2010 goals, which follows the goal to remove the disparities associated with gender (U.S. DHHS, 2000).

The research available on aging and disability in women has focused primarily upon aging as a process of biological decline. There is little understanding of the

experience of aging for women who have had disabilities since childhood; despite evidence from nursing, gerontology, sociology and developmental psychology that aging has physical, psychological, social, and cultural components (Elder, 1994; Moen, Dempster-McClain, & Williams, 1992; Sarvimaki, & Stenbock-Hult, 2000). Women age in complex ways, therefore, it is time nursing expand current understanding of aging to include the experience of women with childhood onset disabilities.

When society develops an understanding of the experiences of aging for a group, health care treatment and policy decisions can be tailored appropriately (Torres-Gill, 1992). By understanding the experience of aging, resources that promote opportunities for a high quality of life can be developed to anticipate changes and support women over their life course. If researchers do not understand more than the biological decline, which may be inevitable, few culturally appropriate interventions can be designed that help women with disabilities with their daily lives. Moreover, by understanding the psychological, social and cultural, as well as physical demands, preventive steps can be taken that may reduce the problems women with disabilities experience.

Study Purpose

The purpose of this study is to explore the meaning of aging for women with childhood onset disabilities. A hermeneutic phenomenological approach will be used to guide this interview study of a group of women who survived paralytic polio in childhood and are aging into late adulthood. Due to the varied cultural and societal experiences throughout the history of the United States for women of varied ethnicities, Anglo, Latino

and African American women will all be interviewed for their experiences of aging with childhood onset disabilities. Moreover, because perceptions of gender influence awareness of the body and social status, gender will be explored as an influence on perceptions of age related changes and subsequent adjustment.

The specific aim is to produce a life course description of the meaning of aging developed from the experience of living with a disability since childhood in a cohort of women age 55 to 65 who survived paralytic polio. Specifically, the researcher will:

- Explore the meaning of the changes women with childhood onset disabilities associate with aging as they enter into later adulthood—ages 55 to 65.
- Explore how women with childhood onset disabilities adjust to the changes they associate with aging.
- Explore how the women’s gender impacts their experience of aging and subsequent adjustment.

Background

This is a study of the intersection of experiences surrounding the body when perceived through the eyes of women growing older with impairment related to childhood polio. The background for this study includes the historical context that influences the meaning of the women’s experiences. This will form the basis for understanding the shared meanings of the group.

In order to understand aging for women over the life course the historical and cultural setting for the cohort will be explored. Cultural values have shifted over the 20^th

century in relation to the position of women in society, and that must be taken into account. The lives of women have shifted over the past 100 years to give women longer lives, more complex roles and greater freedom in American society (Giele, 1993). In a review of multiple studies of women and their level of education in American society, Schuster (1993) classified studies from the early 1900s to the 1950s as typical of a Vanguard Era because women were only selectively gaining education and few entertained the idea of combining family responsibility and professional employment. The post 1950s period was described by Schuster as the Era of Limitations because women were encouraged to educate themselves but primarily for the purposes of gaining a suitable husband. This was followed by the Era of Transitions, which was typified by women struggling to find meaning in their lives through education and employment. This time period was considered a critical time for social change in American history. The Era of Liberation was described as the time period after 1965 when women began to enter the work force with multiple professional opportunities, but with new social stressors (Schuster, 1993). The changes within the social context are significant when studying the lives of women aging with the effects of paralytic polio.

Poliomyelitis is a very old disease; although the height of its impact on Western societies was during the first half of the 20^th century. Poliomyelitis can be traced back as far as the Egyptian remains of a mummy found in 3700 B.C. (Mitchell, 1900). Heine reported the first clear description of the disease in 1840 (Frost, 1911), and in 1841 an epidemic was described by Colmer in a group of infants residing in Louisiana (Frost). Sources indicated that the epidemics of poliomyelitis were first recorded in Norway and

Sweden (Lavinder, Freeman & Frost, 1916), and in the U.S. from 1909 to 1915, the rate of polio was of endemic proportions (death rates ranging from 5,000 to 12,000 over the entire 6 year period (Lavinder et al.). In the year 1916, things began to change in the U.S.; polio became epidemic in the eastern US and contributed to over 6,000 deaths and 23,000 cases (Lavinder et al.). Afterwards, epidemics of polio sporadically occurred in cities and rural regions in the United States and throughout the world with increasing virulence (Sabin, 1949).

Currently, among women with disabilities, polio is one of the most common causes of paralysis after stroke (LeCompte, 1997). Polio related paralysis could range from minor muscle weakness to total paralysis requiring ventilatory support (Morag & Ogra, 1996). Prior to the use of the poliomyelitis vaccine, approximately 32 of every 100,000 children born in the world suffered permanent disability due to the polio virus (Bart, Foulds, & Patriarca, 1996). In 1952, 50,000 people were infected with polio in the United States alone (March of Dimes, 2001b). Today, approximately 640,000 people in the United States have some degree of impairment related to polio; 10 million polio survivors live worldwide (March of Dimes, 2001a).

In paralytic polio, the focus of this study, damage is related to cellular destruction. The lesions of destruction occur in the spinal cord, medulla, cerebellum, midbrain, pallidum and/or the motor area of the cerebral cortex. All other areas of the cerebral cortex are spared (Morag & Ogra, 1996). Three types of paralytic polio have been described correlating with characteristic patterns of the disease (Morag & Ogra). First, there is pure spinal poliomyelitis that involves tightness, weakness or paralysis of the

respiratory muscles without involvement of cranial nerves or vital centers. The largest degree of destruction involves the cervical and thoracic spinal cord segments. Second, pure bulbar poliomyelitis involves the motor cranial nerve nuclei with or without involvement of the vital centers that control things like body temperature and circulation. The third type, bulbospinal poliomyelitis, affects the respiratory centers and the cranial motor nerve nuclei (Morag & Ogra). The symptoms range from increased respiratory rate, inability to cough or sniff to inability to swallow, heart irregularities, flaccid paralysis, pain, incontinence, and decreased blood pressure (Morag & Ogra). This is followed by muscle atrophy due to disuse and denervation (Morag & Ogra). The only treatment is supportive care (Burns, Barber, Brady, & Dunn, 1996).

Although polio infection is no longer a public health epidemic within the United States, there are reasons to conduct this research with polio survivors. The experience of polio survivors can serve as a model for understanding the experience of aging with a disability (Alexander, 1990). This is the first time in history that people with major disabling conditions have lived from childhood to middle and late adulthood (Campbell, 1998) and the aging of polio survivors is largely responsible for this new phenomenon. Many women who are aging with polio were infected as children, rehabilitated and then lived within the community as productive citizens. The focus of polio treatment was on acute care medical issues and many of the long-term consequences of living with a disability over time were ignored (Kemp & Krause, 1999). The experience of aging with a disability can be understood by analyzing the stories of polio survivors.

Polio survivors have described how a disability since childhood has impacted their behaviors and emotions in later life. Research has indicated that polio survivors have made efforts to adapt to new disabilities and environmental problems as they arise (Hansson & Ahlstrom, 1999), and have frequently been able to maintain their self-esteem and quality of life in the face of worsening disability (Currie, Gershkoff, & Cifu, 1993). However, their values related to education, achievement and inner strength, which have been reported to help them normalize when they were young and forget their disability, have been less useful to them as they seek to cope with failing physical health in older age (Kuehn & Winters, 1994). Many of the difficulties associated with living with a disability since childhood have contributed to having a limited social life, not being able to live independently, unemployment, and a loss of access to the health care system after age 21 (Currie et al.). The life stories of polio survivors can provide evidence of how aging is experienced.

Most polio survivors are now in the age range of 40 to 70 years and are likely to enter the health care system at an increased rate as the years pass, which includes acute care settings. Although polio survivors have had on going experiences with health care providers, this has been primarily with rehabilitation professionals who may have a different approach to the care of persons with disabilities (Albrecht, 2001). Nurses in all settings need to be made aware of the rehabilitation needs of persons aging with disabilities. This was supported in an ethnographic study over 3 years with 153 persons with disabilities. From this study, researchers reported two case studies of the experience of how macro level policies impact the daily lives and care of persons with disabilities

(Albrecht). One participant, a 48-year-old male with PPS who was hospitalized with acute respiratory failure, reported that a nurse asked his wife “Why use high tech life support systems to prolong the lives of seriously disabled people who will have no life anyway and will be a burden on their families?”(Albrecht). The nurse and other acute care providers demonstrated little understanding of polio, how the participant had cared for his impairment over his life course, or what changes were anticipated for persons with disabilities as they age. The participant did not receive the instruction he wanted for discharge and the health care system did not understand the man’s past experiences with polio that shaped his current health care needs (Albrecht). Providers cannot remain ignorant to the way a disease shapes the body, mind and society.

The social reaction to polio is an exemplar of how a disease can have a world wide social impact. In a recent tour through a local university museum, the development of the polio vaccine was listed as one of the major societal developments of the 1950s. No other disease related development was listed for any of the time periods from the 1800s to present. Moreover, when scientists announced in 2000 that they developed a means of producing polio in a laboratory setting, the media reacted with outrage. And when persons infected with West Nile virus developed paralysis, it was immediately described as polio like symptoms, which conveyed the idea of an immanent threat. Although other diseases have been more prominent and resulted in the deaths of far more individuals worldwide, polio has invoked considerable societal response within the United States.

It was thirty years after the development of the polio vaccine that the World Health Organization devoted resources and began planning to eliminate polio in developing countries (Shiffman, Beer & Wu, 2002). This was partly due to the realization that people in these countries were suffering serious impairment related to polio despite being considered more prone to early incremental exposure, and it was partly because developing countries demonstrated they could mount effective vaccine programs to reduce the incidence of the disease (Shiffman, et al.). It was clear; however, that society had to come to the conclusion that polio deserved attention above other disease entities, not only a national level, but on a world wide level (Shiffman, et al.).

Sensitizing Framework

A framework that integrates symbolic interactionism and the life course paradigm will be used for this initial hermeneutic phenomenological study exploring the meaning of aging for women with disabilities. Within the life course paradigm, aging is viewed as a developmental process of changing events and socio-cultural meanings that move across time but within the historical and cultural context of the cohort (Giele & Elder, 1998). The life course paradigm incorporates four distinct areas of social life that when brought together tell a story of aging. The four elements, which make up the paradigm, are: 1) lives in time and place, 2) human agency, 3) the timing of lives, and 4) linked lives (Elder, 1994, 1996). These elements, which are based upon the premises of symbolic interactionism, combine to form the life course view of aging.

Symbolic interactionism (Blumer, 1969) is based upon three premises. According to Blumer, people act based upon the meaning objects and events have for them. Second, the meaning that is assigned is based upon their interaction with other people, and third, people select objects and events out of their environment, and they process them through time to make meaning. When a person is asked about an event in their childhood they tell a story that may appear random, but because it was selected it holds meaning to that person who has processed it over time. This indicates their story is not extraneous. It tells about their interaction with other people within a specified time and place. Those interactions are interpreted and conveyed through their stories, which provide information about their sense of human agency, how the timing of events affects them, and what the time and place they lived was like. The stories about how they chose to act or not to act throughout life provide a series of events and associated meanings that tell about aging.

The life course paradigm enables the researcher to understand the developmental changes women with disabilities experience. Harrison (In press) documented through a review of the historical and extant research on women with disabilities that four issues are important when understanding their development into older age: 1). Their lives are highly interdependent, 2) Institutions may shape or alter their life course development, 3) Cultural and historical context shape the meaning of gender and disability, and 4) There is a continued, not episodic, impact of impairment on social role development. The life course paradigm provides the researcher a useful tool for understanding the meaning of aging from the perspective of women with disabilities.

The life course paradigm is consistent with phenomenological views of time, which is highly relevant when studying the effects of aging. The major assumption of the life course paradigm, which is based on the importance of past events on present life pathways, can be explained with Husserl’s description of how we shape our present and future based upon past perceptions. According to Husserl (1917/1999), when time is viewed as individual consciousness, it is the medium of existence that passes without regard in the present. It takes form through a stream of perceptions while allowing us to anticipate the future and bring the past into the present (Husserl). Our perceptions in the present ultimately become recollection and are brought forward as recollection but never as perception repeated (Husserl). The perceptions that have past remain in our past despite new perceptions, but the past perceptions become objectified within the mind (Husserl). The human function of objectifying past perception makes up our identity, reality, and history. Our every moment is placed in sequence by time with death reminding us of its end (Berger & Luckman, 1966). The objectification of past events as recollection makes the experience of events in time knowledge, and this knowledge forms our history and makes us aware of the limitations of our biology. Gertz, in his work with the Balinese, wrote that time could be marked in many ways to gain an understanding of its passage, yet the “most important is by the recognition in oneself and in one’s fellowmen of the process of biological aging, the appearance, maturation, decay, and disappearance of concrete individuals” (1973, p. 389). After all, aging occurs with time, and time is the horizon in which all interpretation is made (Heidegger, 1962).

Understanding the impact of disability from a hermeneutic phenomenological view of the life course will advance our understanding of how aging is experienced from the standpoint of women with disabilities. According to Shakespeare & Watson (2001) there is a need for an understanding of disability that values impairment as part of the continuum of human experience instead of objectifying and dividing persons based upon categories of ability. In other words, disability should be contextualized as a lived experience that is dependent upon context and experience (Gabel 1999), but does not place people into stringent categories of disabled and able-bodied. When the body is no longer seen as ill or in a sick role, then the gaze must shift to viewing persons with disabilities within a context of aging that understands them as variations of the human body (Shakespeare & Watson). Within this context they are no longer the other or the excluded, but active members of society aging but within a different context. Just as women were reexamined when acknowledged to have a varied experience from men, women with disabilities must be explored--not as an extension of disease, medicine, illness or men with disabilities, but within their own lived experience. This view of disability is consistent with the view taken in other life course studies of aging women (Moen, et al., 1992).

The life course trajectory combined with a disability trajectory set within the historical changes experienced by women can guide the understanding of how disability affects women with disabilities. Based on the work of Scheer and Luborsky (1991), Schuster (1993), Campbell (1994) and Wenneberg & Ahlstrom (2000) the life course trajectory was adapted for women with disabilities and presented in figure 1.

illustration not visible in this excerpt

Figure 1.Life course development for women with childhood onset disability. Adapted from the work of Campbell (1994), Scheer & Luborsky (1991), Wenneberg and Ahlstrom (2000), and Schuster (1993).

Definitions

Childhood onset disabilityis understood as a permanent functional impairment resulting from pathology and/or damage that occurred prior to age twelve and impacts adjustment over the life course.

Genderis a set of culturally prescribed attributes that characterize the degree of femininity and/or masculinity perceived by others and/or enacted by the individual.

Impairmentis an objectively or subjectively determined alteration in the body’s ability to function as determined normal. For example, the inability to move an arm or leg is impairment.

Disabilityis a contextualized and relative inability to meet the demands of the sociocultural environment. The loss of one’s job due to the inability to sort papers, which was attributed to the arm paralysis, is an example of disability.

Cultureis a set of meanings that are locally shared among people and enable them to communicate and advance their knowledge (Parsons, 1951; Geertz, 1973; Hall & Neitz, 1993).

Agingis a developmental process of changing events and biological and socio-cultural meanings that are set within a framework of chronological time and geographic location.The life courseis defined as the “culturally defined script of normatively expected stages and transitions for the socially defined group” (Scheer & Luborsky, 1991, p. 1174).

Assumptions

- People act based upon the meanings they gain from interaction within their environment and the derived meanings are processed over time. (Blumer, 1969).
- We can understand the meaning of experiences through communication, which may include facial expression, gestures and written or verbal expression (Gadamer, 2000; Polkinghorne, 1983).
- The most accurate interpretation of the meaning of experiences conveyed is gained through a precise understanding of the social, cultural and historical context in which they live out their lives (Gadamer, 2000).
- Early events within the life course impact later adult development (Elder, 1996, 1998). A person’s biography influences how they react to and adapt to any new events (Elder & Liker, 1982; Elder & Chan, 1999).
- There are cultural meaning assigned to gender, ethnicity and disability, which influence health.

Significance to Nursing

Although this is not a study of the practice of nursing, it is designed to inform nursing praxis. Nurses are challenged to take the study findings and use them to guide the care of women with disabilities. This involves the care provided in acute, rehabilitation and community settings. It also involves the care given when influencing policy decisions and interacting with women on a daily basis. This is a study of women with childhood onset disabilities done to inform nursing praxis of the meaning found in aging. When historical shifts in the care of persons with disabilities are examined, the need for this understanding becomes clear.

In only four decades society has moved from celebrating the survival of persons with polio to contemplating assisted suicide for persons with disabilities that threaten quality of life (Koch, 1999). The American public, scientific community, government, and health care community are consistently faced with difficult choices surrounding the

use of technology and the subsequent formation of policy designed to care for those in need. One of the most controversial is the decision to prolong life in the face of disability and possible suffering. Other decisions include how to best distribute resources through entitlement programs to the elderly and/or need-based programs to persons with disabilities. All of these decisions surround the interpretation of the meaning given to the experience of aging and to disability, often by people who have not lived the majority of their life with a disability. Nursing has been viewed as one discipline that could guide the application of new technology respectfully into clinical practice (Newell, 2000), and help guide policy decisions designed to improve the lives of persons aging with disabilities. However, nursing must begin with an understanding of the life course experience of disability and aging. Without this information, society may waste valuable resources on health care policies and provisions not grounded in the lived experience of women aging with disabilities.

Life course stories have clinical application because nurses can use them in practice to guide care. According to G. Frank (1996), stories can be analyzed to capture the meaning of an experience for a group, which can be used by health care providers to make assessments and provide care that may indicate a need for further intervention. These stories will highlight what women with childhood onset disabilities find as beneficial while aging with a disability, and provide nurses a source to validate their own interpretations of their patient’s experiences.

Research Questions:

The guiding question for this qualitative research study is:What is the meaning

of aging for women who have lived with the effects of paralytic polio since before age

12 and are now entering later adulthood?Based upon the literature set within the

experience of aging for women with childhood onset disabilities, I will answer the

following questions:

- What is the meaning of the changes women with childhood onset disabilities associate with aging as they enter into later adulthood—ages 55 to 65?
- How do women with childhood onset disabilities adjust to the changes they associate with aging?
- How does the women’s gender impact their experience of aging and subsequent adjustment?

Chapter 2: Review of Literature

In order to examine the literature surrounding the meaning of aging for women with childhood onset disability, five major areas of literature will be reviewed. The first section of this literature review focuses on the meaning of aging, and it is followed by life course studies of aging women. Although this is not intended to be an exhaustive review, it provides an understanding of aging women within a life course context. The third section is a summary of studies that report on the experiences of aging with a disability. A fourth section narrows the report to the physiologic and psychosocial changes experienced with aging by polio survivors. In the final section, studies that represent experiences for women with disabilities and how thesemayimpact the meaning of aging are presented within a life course perspective. This section was essential because few studies directly examined the experience of aging for women with disabilities.

The Meaning of Aging

Chronological age has been broken into stages of life that have associated tasks, meanings and roles (Neurgarten & Hagestad, 1976), and according to Erikson, Erikson and Kivnick (1959) the primary task of the later stage is to find meaning in past experiences. Persons are to look back over the events of their life to find meaning in what has come and gone. According to Adams-Price, Henley, & Hale (1998), older individuals are capable of integrating positive and negative events to find meaning in their later years. In fact, aging can emerge as a positive experience despite associated negative changes (Adams-Price, et al.). Interestingly, in a qualitative study older individuals did

not associate aging with any particular event nor did they recognize when it was that they became old (Adams-Price et al.). Moreover, Kaufman (1986) found in her in-depth qualitative interviews that the older individuals found meaning in being themselves, not in the experience of aging. Therefore, if people find meaning in being themselves and do not recognize when they become old, the last stage of life may not be a trigger for the process of finding meaning as described by Erikson and colleagues. Meaning may be found over the life course as events unfold and the identity formed—not as an activity chiefly for the later years of life.

In order to understand aging the continuity of self combined with the changes experienced must be incorporated into the phenomenon (Andrews, 1999). Aging means little when reduced to numbers, but it is the “transformation of the self which accompanies the new age which is of significance” (Andrews, p.312). A person may feel like the same person they have always been but have been changed mentally and physically due to their life experience (Andrews). The elderly person is the person of many experiences and events. Moreover, some elderly report that it would be a waste of time to have lived without the experiences to reflect upon (Andrews).

The individual’s perception of age is influenced by unique life events, but societies’ view of aging also influences the individual’s perception of aging. According to Goffman (1997) the moral career of a person is the change a person perceives in their self-image as others look at them over time. Our inability to accept aging due to the youth orientation of our society may force us to devalue the later years of life (Andrews, 1999). If the way people view us over time influences our self-image, a youth orientated society could impact our perception of age as we grow old. The feeling of being stigmatized for aging may have created a desire not to age or to hide one’s age. Moreover, Hepworth (1995) posited that the person is a combination of their physical self and outward appearance, and the ways others perceive the person influences their interactions. They may be perceived as negative, but that person could use negative perceptions as a resource for negotiations. In other words, looking young may be socially desirable, but a reduced physical condition associated with age could be used to gain favors from close relations. The image perceived and portrayed can be flexible, plural and diverse depending upon the goal of the interaction.

Neugarten (1968) proposed that identity changes very slowly as people age and that expected life events do little to change the person because they are given preparation. Certain events are expected due to cultural and societal norms. They are anticipated, good or bad, and their arrival is given preparation. Even death, if it appeared on schedule, is prepared for and perceived as a developmental milestone. Events that were not expected have had more of an impact due to the unsynchronized nature with society, however, as society has become less rigid regarding timing of events, aging and identity change has become more individualized (Neugarten).

Aging has diverse meaning depending upon the experiences and social context of the individual, which when prepared for may have a positive impact; therefore to understand aging, it has been proposed that researchers study the life course instead of cross sectional studies (Moen, 1995). The life course view of aging is a perspective that combines the age cohort that a person belongs to, their biological age, their social life

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