Relationships, caregiving and multiple sclerosis: gender and perceptions of care

This qualitative research study attempted to understand and unpack the caregiving experience in the illness of Multiple Sclerosis (MS). Ten couples were interviewed separately and later as a dyad to discuss care, care responsibilities and support systems to see how gender influenced either the caregiving or care receiving experience. The purpose of this research was to explore, develop, and understand perceptions of care between care providers and caregivers of MS under the lens of feminist care theory/ethics of care within a social model of disability. Caregivers and those diagnosed with MS experience the caregiving relationship in a variety of ways where gender does indeed influence the experience of care. Gender provides a dimension for understanding the social construction of the disease including daily responsibilities of both the care giver and care receiver. Participants were acutely aware of gender when required to complete a care event or task outside of traditional gender roles. The social construction of gender provided a point of awareness for participants to examine care roles. Those tasks falling outside traditional gender roles were frequently brought to consciousness and provided an area of potential provocation. Additionally, this research examined care needs and the role of social support in the care experience. Care needs differed among participants depending on the availability of resources. Resources include: financial, time and social support. Access to these various resources affected the outcome of the care situation. Gender in turn influenced the understanding and use of resources as a dynamic in the experience. The social construction of gender also affected participants' ability to clarify and understand their experience in terms of accessing resources.

RELATIONSHIPS, CAREGIVING AND MULTIPLE SCLEROSIS: GENDER AND PERCEPTIONS OF CARE by Jennifer Christine Hughes A dissertation submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of Doctor of Philosophy College of Social Work The University of Utah August 2012 Copyright © Jennifer Christine Hughes 2012 All Rights Reserved STATEMENT OF THESIS APPROVAL The thesis of _________________Jennifer Christine Hughes_______________________ has been approved by the following supervisory committee members: ______________Christina Gringeri_____________ , Chair _4/30/2012__ ____________Lawrence Henry Liese___________ , Member _4/30/2012__ _______________Marilyn Luptak______________ , Member _4/30/2012__ _______________Caren Jean Frost_____________ , Member _4/30/2012__ _______________Gayle Trollinger_____________ , Member _4/30/2012__ and by ______________________Jannah Mather_____________________ , Chair of the Department of ___________________Social Work______________________________ and by Charles A. Wight, Dean of The Graduate School. ABSTRACT This qualitative research study attempted to understand and unpack the caregiving experience in the illness of Multiple Sclerosis (MS). Ten couples were interviewed separately and later as a dyad to discuss care, care responsibilities and support systems to see how gender influenced either the caregiving or care receiving experience. The purpose of this research was to explore, develop, and understand perceptions of care between care providers and caregivers of MS under the lens of feminist care theory/ethics of care within a social model of disability. Caregivers and those diagnosed with MS experience the caregiving relationship in a variety of ways where gender does indeed influence the experience of care. Gender provides a dimension for understanding the social construction of the disease including daily responsibilities of both the care giver and care receiver. Participants were acutely aware of gender when required to complete a care event or task outside of traditional gender roles. The social construction of gender provided a point of awareness for participants to examine care roles. Those tasks falling outside traditional gender roles were frequently brought to consciousness and provided an area of potential provocation. Additionally, this research examined care needs and the role of social support in the care experience. Care needs differed among participants depending on the availability of resources. Resources include: financial, time and social support. Access to these various resources affected the outcome of the care situation. Gender in turn influenced the understanding and use of resources as a dynamic in the experience. The social construction of gender also affected participants' ability to clarify and understand their experience in terms of accessing resources. ivTABLE OF CONTENTS ABSTRACT ............................................................................................................. iii CHAPTER 1 INTRODUCTION ............................................................................................... 1 Overview of Multiple Sclerosis ............................................................................ 2 Overview of Multiple Sclerosis Caregiving ......................................................... 5 Theoretical Framework ......................................................................................... 9 Significance of the Research ................................................................................. 11 Research Questions ............................................................................................... 12 Organization of the Dissertation ........................................................................... 12 2 REVIEW OF THE LITERATURE ...................................................................... 14 Understanding Multiple Sclerosis ......................................................................... 15 Disability and Theoretical Framework ................................................................. 16 Concepts of Care ................................................................................................... 19 Pearlin's Caregiver Stress Process Model ............................................................ 21 Gender Differences in Providing Care .................................................................. 24 Gender Differences in Multiple Sclerosis Care ........................................... 26 Social Support and Multiple Sclerosis Care ......................................................... 27 Benefits to the Community ................................................................................... 31 Care Needs ............................................................................................................ 32 Costs of Multiple Sclerosis .......................................................................... 33 Other Illnesses .............................................................................................. 34 Caregiver Benefits ................................................................................................ 35 Summary of Literature Review ............................................................................. 36 Pyramid of Care .................................................................................................... 37 3 METHODOLOGY ............................................................................................... 40 Introduction ........................................................................................................... 40 Personal Perspective ............................................................................................. 40 Personal Growth........................................................................................... 45 Constructivist Research Paradigm ........................................................................ 47 Research Design .................................................................................................... 49 Research Question ................................................................................................ 49 Interview Question Guide ............................................................................ 50 Institutional Review Board ................................................................................... 52 Sampling ............................................................................................................. 52 Convenience Sampling ................................................................................ 54 Data Collection ............................................................................................ 55 Interviews ............................................................................................................. 56 Follow-up Interview..................................................................................... 56 Data Analysis ............................................................................................... 58 Strengths and Limitations of Study Design .......................................................... 60 Learning Process .......................................................................................... 61 4 RESULTS ............................................................................................................. 63 Introduction ........................................................................................................... 63 Interview Coding ......................................................................................... 63 Overview ............................................................................................................. 64 Demographic Information ..................................................................................... 65 Identified Themes ................................................................................................. 68 Participant Portraits ............................................................................................... 68 Care Activities ...................................................................................................... 71 Social Support ....................................................................................................... 75 Traditional Gender Roles ...................................................................................... 79 Care Needs ............................................................................................................ 82 Care and Dependency ........................................................................................... 83 Pearlin's Stress Process Model ............................................................................. 87 Stages of Grief ...................................................................................................... 92 Loss ............................................................................................................. 93 Denial ........................................................................................................... 94 Isolation........................................................................................................ 95 Anger............................................................................................................ 96 Bargaining .................................................................................................... 96 Depression.................................................................................................... 99 Acceptance ................................................................................................... 101 Other People Have it Worse ................................................................................. 102 Perception Differences .......................................................................................... 105 Couple Congruence ...................................................................................... 106 Summary ............................................................................................................. 110 5 DISCUSSION ....................................................................................................... 113 Point of Awareness ............................................................................................... 115 Participants ............................................................................................................ 116 Severity of Illness ................................................................................................. 118 vi Factors to Consider ............................................................................................... 118 Available Resources.............................................................................................. 119 Continued Research .............................................................................................. 121 Study Strengths and Limitations ........................................................................... 122 Transferability ....................................................................................................... 124 Implications........................................................................................................... 125 Conclusion ............................................................................................................ 126 APPENDICES A: DEMOGRAPHIC INFORMATION ........................................................................ 127 B: SEMISTRUCTURED QUESTIONNAIRE .............................................................. 130 REFERENCES ............................................................................................................. 133 vii LIST OF FIGURES Figure Page 1 Pearlin's Caregiver Stress Process Model…………………………….……….. 23 2 Pyramid of Care…………………………………………………………….…...38 3 Caregiver versus patient education level…………………………………….….66 4 Gender caregiver versus patient education level………………………………..67 5 Pearlin's Caregiver Stress Process Model……………………………………....88 CHAPTER 1 INTRODUCTION In the United States, 200 people are diagnosed with Multiple Sclerosis (MS) each week (NMSS 2009a). Women, typically society's caregivers, are afflicted with MS at twice the rate of men, which places many women in the reverse position of requiring care. In this research, I examined the experience of caring between caregivers and care receivers, and explored whether that experience was influenced by gender differences within the specific context of multiple sclerosis patients. Furthermore, I examined the care and social support needs of caregivers and care receivers. MS is a widely expansive disease relying on the care assistance of non-professionals. The National Multiple Sclerosis Society (NMSS) estimates that 2.5 million individuals have Multiple Sclerosis worldwide. Approximately 400,000 of those reside in the United States. Between 5-10% of those with MS are unable to remain at home and require nursing home care (NMSS 2009c). Therefore, 90-95% of individuals with MS remain in their own homes requiring some type of care assistance. Most often the responsibility of providing home care falls on the family and loved ones. The experiences of this group of unpaid-nonprofessional caregivers will be explored and examined in this qualitative research study. 2 Unpaid-nonprofessional caregivers of MS patients are responsible for a wide variety of care activities including medical care, emotional support, physical assistance and financial needs. The care provider can be burdened with the many needs of the MS patient. Developing understanding and providing support to the caregiver relationship will benefit both patient and caregiver alike. Critical to this understanding is the underlying question of whether gender differences exist in the care experience. Extensive research on care and caregivers has been conducted in the past focusing on the general care phenomena (Cummins, 2001; Dobrof, Ebenstein, Dodd, & Epstein, 2006; Pearlin, Mullan, Semple, & Skaff, 1990; Stone, Cafferata, & Sangl, 1987). However, specific research on MS care providers is less readily available; research available on the MS care relationship encourages further exploration. Studies conducted by Long and Miller (1991), Chipchase and Lincoln (2001) and O'Hara et al. (2004) suggested the role and perceptions of family care providers for MS patients should be considered further. The dynamics of providing care for this population is unique because of factors including: age of onset, gender connection to the illness, and recent advances in medication management that delay the progression of the illness. MS is a disease unlike others and a basic understanding of this disease helps establish the foundation of this research. Overview of Multiple Sclerosis MS is the most common neurological disease in young adults. It is first diagnosed between the ages of 20 to 50 years. The disease is not contagious or directly inherited although there are several factors that may help determine who eventually 3 contracts this disease. These factors include gender, genetics, age, geography, and ethnic background. The prevalence of MS is higher for women than men (Nodder, Chappel, Bates, Freeman, Hatch & Keen, 2000), with a ratio of at least two women to every one man. Although MS is not directly inherited, genetics do play a role in determining who develops the disease. The overall risk for developing MS increases from 1/750 for the general population to 1/40 if a close relative (parent, child or sibling) has MS. MS is more common in individuals who live in northern latitudes and less common for those who reside closer to the equator. MS occurs in most ethnic groups although it is more common in Caucasians of European ancestry (NMSS 2009d). MS is a progressive yet unpredictable neurological condition that results in a wide array of symptoms and disabilities. The disease course places a burden not only on those with MS but on their caregivers as well. Severity and symptoms of MS vary greatly from patient to patient and include fatigue; numbness; walking; balance and coordination problems; bladder problems; vision problems; dizziness; vertigo; sexual dysfunction; pain; impaired cognitive function; emotional changes; depression; and spasticity (NMSS 2010b). With recent advances in medication management, individuals with multiple sclerosis are having fewer and less severe exacerbations. Furthermore, medications delay the onset of significant disability and MS patients are maintained in their own home longer, requiring less institutional care. This is good news for the MS patient; however; it places additional responsibilities on the home care provider. Eighty percent of informal home care is provided by live-in relatives, primarily the MS patient's partner (Carton, Loos, Pacolet, Versieck, & Vlietinck, 2000). The responsibility of in home care falls to 4 the patient's loved ones and it is that unpaid- nonprofessional care relationship upon which this research will focus. The random nature of the disease makes it challenging for patients and loved ones. It is difficult to predict the individual course of MS. The disease process, symptoms and severity vary significantly from one individual to another. Although rare, some individuals with severe disability may experience infections and die prematurely. The National Multiple Sclerosis Society reports that the overall life expectancy is 95% of normal life expectancy (NMSS 2010b). The effects of MS are more insidious. MS generally impairs the individual's ability to complete the activities of daily living. Two Women with Multiple Sclerosis and Their Caregivers: Conflicting Normative Expectations (Abma, Oeseburg, Widdershoven, Goldsteen, & Verkerk, 2005) provides two case studies of women with MS to further understanding into the illness. Kathy is a 48-year-old woman with MS who was diagnosed 20 years ago. She is ambulatory but requires the use of a wheelchair or walker outside her home. She has hired professional caregiving assistance a few hours a week. Kathy used to work full time but has had to reduce her workload to two afternoons a week. In the last 2 years, Kathy has frequently used sick leave as her condition has worsened. She experiences spasticity in both hands and she is extremely tired. She wonders if she will be able to continue working. Kathy's mother worked her entire adult life and Kathy perceives work as important by providing status and contributions to society. Kathy defines herself as an ambitious woman but she acknowledges that going to work requires so much energy that she is unable to maintain contact with friends and family members. MS diminished aspects of life that Kathy values, which results in her feeling powerless and grieving her losses. 5 Anne is a 39-year-old woman with the diagnosis of MS for over 17 years. She describes herself as someone who has learned to live with MS. Anne lost her job at the age of 28 when she was first diagnosed with the disease. Anne reports, "I am not solely an MS patient. I am also Anne who wants to do other things in life, in my spare time. I do not always want to be involved with MS that is just a part of me." She yearns for an identity outside of her disease. Anne goes on to say, "On a daily basis, I am confronted with the dependence on others, which is a fact of life, and that help I need from others" (Abma et al., 2005:486). Another example of an MS experience is beautifully illustrated by the book and movie, A Genius in the Family. Helen Meekosha offers a review of both the book and movie in her article, "A Disabled Genius in the Family: Personal Musings on the Tale of Two Sisters". Meekosha summarizes the story of Jackie, a famous cellist. Jackie's sister, Hilary, believes that without Jackie's cello, Jackie would be nothing. Jackie's husband tells Jackie, "You wouldn't be you if you couldn't play." As Jackie's MS progresses, playing the cello becomes impossible and Jackie is unable to get her fingers around the strings. Jackie says, "I just want to play again. I'll play the fucking triangle. I just want to play music again"(Meekosha, 2000:814). All three of these narratives offer a brief glance into the lives of those living with MS. That experience is shaped by the family care the patients receive. Overview of Multiple Sclerosis Caregiving Providing care for a loved one with MS can be both deeply satisfying and emotionally and physically exhausting. Caregiving activities for a loved one with MS 6 vary with the severity of the disease. Caring for someone with few functional difficulties may simply involve giving injections or offering support. Providing care for someone with a more severe level of impairment may involve assistance with daily living activities such as toileting, dressing, bathing, and transferring. Individuals with significant impairment from MS are able to remain at home for long periods of time providing they have the assistance of some type of care provider, either paid-professional or unpaid-nonprofessional. Typically, individuals with illness prefer the assistance of a loved one as the primary caregiver. Considerable amounts of care, provided to people with MS, are informal in nature and most patients want to be cared for in a familiar environment. There are numerous benefits to both society and the MS patient in utilizing unpaid-nonprofessional care. Specifically, unpaid-nonprofessional care is care provided by loved ones, usually family members. This type of care is termed "informal" because care is arranged by loved ones and typically no financial reimbursement is received. Health care providers recognize the psychological and social advantages of utilizing informal care (Carton et al., 2000). Not only do individuals prefer informal care, but social support provided by family care relationships also becomes a major factor in overall adaptation to physical illness (Long & Miller, 1991). Furthermore, individuals with MS reported higher quality of life measurements when they perceived having more social support (Schwartz & Frohner, 2005). Informal care is crucial not only in maintaining patients with MS in the community but additionally providing a significant cost savings as opposed to paid or institutional care. 7 Providing care for a chronically ill individual is generally viewed as a stressful situation for caregivers and has a profound impact on not only the patient's social roles but his or her family's well-being (Hakim, Bakheit, Bryant, Roberts, McIntosh-Michaelis, Spackman, Martins, & McLellan, 2000). Caregivers of individuals with a disability are at risk of increased stress and depression as well as poorer quality of life measurements (Cummins, 2001). The effects of providing care are often overwhelming for the caregiver, resulting in changing roles, restrictions, economic concerns, employment problems and the decline in social relationships (O'Brien, 1993). Specifically, MS has a profound effect on caregivers of patients with MS, including psychological stress, lack of social support, social isolation, and profound loss issues. The well-being of the overwhelmed family caregiver is an ongoing major health issue (O'Brien, 1993). The question of how gender differences affect the overall experience of providing and receiving care remains unanswered. Patients are typically diagnosed with MS as young or middle aged adults around the time individuals are establishing intimate relationships and partnerships. Time of diagnosis coincides with the potential for significant changes and life stressors, such as marriage, child rearing, providing financial support to family and career establishment. Patients and families are at a time in life when they are ill prepared to deal with this debilitating chronic condition, which makes caregiving within the MS population of particular interest to evaluate and research. Gender roles are especially significant at this time in life when individuals are raising children and tending to the demands of work, family and marriage. 8 The role that social support plays in the MS care relationship is another area of concentration for the research. According to Long and Miller (1991), social support is significant to the well-being of MS patients. Social support was found to be a major factor in adaptation to physical illness, and the lack of family support is useful in predicting a tendency toward suicidal behavior in MS patients. Although socially supportive relationships are frequently disrupted and deteriorate within the stressful nature of providing care, MS patients have higher quality of life measures when utilizing family support systems (Long & Miller, 1991). Despite the research indicating the need for social support among MS patients, there is a lack of literature exploring the needs of the MS patient caregivers. Given the positive relationship between social support and adaptation among individuals with MS, it is reasonable to assume that caregivers could also benefit from social support to prevent feeling stressed and isolated, and to assist the caregiver in managing his or her feelings related to grief and loss. Additionally, providing a support system for the caregiver ultimately benefits both the individual with MS and society, because patients prefer the assistance of a loved one, and the expense to society is reduced as a result of care being provided by a loved one without any upfront cost. Available social support is not always utilized by family caregivers when needed. O'Hara, De Souza, and Ide (2004) concluded that although MS patients are receiving considerable amounts of care by family members, those caregivers are not receiving social support from professionals. Moreover, these caregivers report clinically significant levels of psychological stress related to the care of a partner with MS (Pakenham, 2001). Providing support to the caregivers is likely to reduce feelings of burden, stress and isolation of the caregiver. It allows the caregiver to continue in the care giving 9 responsibility role, thus reducing the potential for the patient to require professional care assistance which is costly and could tax an overburdened disability insurance system. Providing support to the care relationship is positively related to overall well-being of the care experience. Dobrof, Ebenstein, Dodd, and Epstein (2006) reported that supporting caregivers over time helped them cope with care of a loved one, and caregiver intervention for care of long-term or chronically ill patients enhanced caregivers' abilities to cope with caregiving responsibilities. Moreover, this research demonstrated a positive correlation between support services and caregivers' improved ability to cope, with 61% of participants reporting this improvement (Dobrof et al., 2006). Community resources and available support varies from location to location. Nationally, varieties of online support networks are available for individuals with MS, loved ones and caregivers. The National Multiple Sclerosis Society has resources available for caregivers and recommends using the National Family Caregivers Association (NFCA), Caregiver.com, and the Well Spouse Foundation as caregiver resources for communities of support (NMSS 2010a). Theoretical Framework The current research will begin with a social model of disability perspective which argues that disability is a socially constructed problem, the construction of which has problematic consequences. As a result, society should seek to modify the conditions that lead to complications. From the social model of disability perspective, feminist theory will be used as the method of inquiry, specifically feminist care theory. Research on care and dependency has been connected to feminist theory in the 1980s, where 10 providing care was seen as a "natural" feminine activity. Fine and Glendinning (2005) discuss the concepts of care receiver's independence versus interdependence between the carer and patient and how this relationship dynamic emerged as a factor in providing care, i.e., is the care recipient dependent on care or is in fact the couple a care partnership that becomes interdependent on one another? Feminist Carol Gilligan provided an understanding of care where the ideal care situation was seen as an activity of relationships, responding to need and sustaining connection. She identified a set of moral principles linked to care, distinctive but equal to the moral principles of both justice and rights. Gilligan believed that the "ethic of care," which developed out of the appreciation and importance of care and caring labor, is most evident among women and is understood as part of the feminine process of moral development because it is based on the universal experience of having been cared for as opposed to the rule-based impersonal justice associated with masculine moral development. Gilligan did acknowledge the gender link is not exclusively feminine. She believed that development for both feminine and masculine moral identity could provide an integration of rights and responsibilities (Gilligan, 1982). Other feminist scholars such as Virginia Held, Joan Tronto and Nel Noddings offer a response to Gilligan and challenge the origins of care as a "naturally" feminine activity. These scholars reject Gilligan's dichotomy between female moral development based on care and male moral development based on justice. Additionally, they argue that care is a precondition for justice and the right to provide and receive care should be envisioned as a social justice issue (Fine & Glendinning, 2005; Held, 1995; Noddings, 2003; Tronto, 1993). 11 The theoretical framework for the "ethics of care model" provides the overarching theoretical lens to be used in this particular research. Looking at the role of caregiving and MS under a historically feminist lens is somewhat ironic in that a majority of patients with MS are women and caregivers are men who live in the same home as the person needing care, while nationally, most "nonfamily" caregivers are women who do not live with the person needing care. Buchanan, Radin, Chakravorty, and Tyry (2009) reported that the vast majority of informal caregivers for MS patients are spouses and over half of the spouses are husbands. The unique gender distribution among people who develop multiple sclerosis provides a rich environment in which to explore gender differences of care under the feminist ethics of care moral development model. Significance of the Research Clearly, social support provided by families and significant others is important to the overall well-being of an individual suffering from Multiple Sclerosis. However, the impact gender has on the care experience and on supporting the recipient of care is not understood. The role gender plays in care activities is underdeveloped and at times discredited. Research is available on care for other illnesses; however, research on the specifics of multiple sclerosis care is rather limited. Little qualitative research is available on the subject of perceptions of care and support needs of unpaid family caregivers. Exploration of gender effects on the care phenomenon will provide insight and ultimately help develop greater understanding of the support and care needs for both the caregiver and receiver. The caregiver system is the link between the disabled person and society. 12 Understanding and strengthening that system is of particular interest and has potential ramifications for the disabled, their caregivers, practitioners, policymakers, researchers, and the greater community. Social workers will benefit from understanding the care experience and relationship of MS patients and their caregivers and be able to further utilize this information in providing assistance to MS patients and caregivers. Improving understanding will ultimately improve support opportunities. Research Questions This qualitative research study explores gender influences on the provision of care and perceptions of providing that care for patients with multiple sclerosis using a constructivist paradigm. It will investigate and discuss care experiences in MS care relationships and how gender influences this situation, which is especially beneficial for future social work practice. The study's research questions are as follows: 1.) How do caregivers and those diagnosed with MS experience the caregiving relationship? 2.) Does gender influence the provision of care and perceptions of care in providing for patients with multiple sclerosis? 3.) What are the care needs for both the MS caregiver and care receiver? 4.) What is the role of social support in the care relationship? Organization of the Dissertation The remainder of this thesis is organized into four chapters. Chapter 2 reviews the relevant caregiver research by looking at feminist care theory, care research, and 13 specifically focusing on MS caregiving needs. Specific attention will be paid to gender differences. Chapter 3 describes the methods of this study, including the research questions and plans for analysis. Chapter 4 presents the findings from the 30 qualitative interviews with 10 couples, five female patients and five male patients. Additionally, predetermined and emerging themes will be discussed in Chapter 4. The fifth and final Chapter offers an analytical discussion of the study themes, discussing the strengths and limitations of the study and implications for the field of social work, and offers recommendations for future research. CHAPTER 2 REVIEW OF THE LITERATURE The following review of the relevant literature provides background and understanding to the process of providing care for individuals with MS and looks at the potential existence of gender differences in care from a feminist care theory perspective. I begin the literature review by presenting recent information on MS, which provides an understanding of the specifics of the disease and the needs of families and loved ones. Next, the literature review provides an explanation of the social model of disability from a feminist care perspective to further an understanding of disability and care needs. Care concepts are developed by exploring caregiving in a variety of illnesses and then specifically looking at care in individuals with MS. Additionally, literature that discusses gender differences in caregiving is explored, continuing with literature that specifically discusses gender differences in MS caregiving. Social support roles and benefits of unpaid-nonprofessional care to the community are also discussed. Finally, the review concludes by providing an understanding of caregiver needs and benefits of caregiver assistance. 15 Understanding Multiple Sclerosis The National Multiple Sclerosis Society (NMSS) provides current comprehensive information about this illness (2010b). NMSS explains that multiple sclerosis is an autoimmune disease where the immune system attacks the brain or, more specifically, the myelin sheath which protects the nerve fibers in the central nervous system. The progression of the disease is variable and unpredictable. There are four courses of MS: relapsing-remitting, primary-progressive, secondary-progressive, and progressive-relapsing. Eighty-five percent of people experience relapsing-remitting MS, which is characterized by periods of relapse followed by periods of recovery. Ten percent of people with MS experience primary-progressive MS, which results in worsening neurological functions with no distinct times of relapse and recovery. Secondary-progressive MS generally occurs around 10 years after diagnosis of relapsing-remitting MS where the disease worsens steadily with or without remissions. Five percent of individuals experience progressive-relapsing MS, a rare, steadily worsening disease with clear attacks, and these individuals may or may not experience periods of recovery. MS (NMSS, 2010c). Advances in medication are hopeful and have proven to be effective at delaying the onset of severe symptoms of the disease. Individuals are diagnosed with MS between the ages of 20-50 as symptoms initially present. It is not considered a fatal disease; however, individuals with MS face increasing limitations and reduced productivity as the disease progresses. Women are diagnosed with MS twice as often as are men. Genetic factors increase susceptibility to the disease, but there is no evidence that MS is directly inherited. Additionally, MS is not contagious. Geographic location may have some relationship to the disease as well, as 16 people residing in northern latitudes have a higher incidence of being diagnosed than people residing closer to the equator. Researchers are investigating the relationship between vitamin D and sunlight in protecting against the occurrence of MS. The causes of MS remain unknown although current research focuses on four factors: immunologic, environmental, infectious, and genetic. Immunologic studies determine which immune cells are mounting the attack on the myelin sheath. Environmental studies suggest that exposure to some environmental agent, such as vitamin D, before puberty may predispose a person to MS later in life. Infectious studies are evaluating the relationship between exposures to an infectious process as a potentially triggering factor in MS, and genetic studies are looking at the increase in prevalence of the disease if a close relative has MS. The prevalence varies geographically, reaching 5-30 incidents per 100,000 in North America and Northern Europe (Alguire & Epstein, 2006). Disability and Theoretical Framework Individuals with MS fall into a classification as disabled by society. Society attempts to understand how individuals with a disability fit into the general public. These understandings are formulated by developing and considering models of disability. Models of disability are not the same as theories of disability but are generators of hypotheses used to articulate an explanation of a phenomenon. Models of disability cannot be proven "true" but are representations of a mindset of thinking on disability. Two such models are widely accepted and understood in disability studies: the medical model of disability and the social model of disability (Fine & Glendinning, 2005; 17 Llewellyn & Hogan, 2000). The medical model views disability as a condition; it is the result of a physiological impairment due to an illness or injury. The social model of disability views disability as a socially constructed problem that is not the fault of the individual; rather; it is a condition that society can and should seek to modify. These models have a hold in disability research and stem from developmental psychology in systems theory (Llewellyn & Hogan, 2000). The social model of disability and systems theory become a starting point for this literature review. The social model of disability challenges society to address how it can benefit the individual with a disability (Llewellyn & Hogan, 2000). Finkelstein (2001) presented a dual perspective on disability in which "you see disability fundamentally as a personal tragedy or you see it as a form of social oppression" ( p. 4). Interpreting disability as a form of social oppression challenges society to take responsibility for change and provide necessary assistance for those who are disabled (Finkelstein, 2001; Thomas, 2004). The social model of disability presents a person-in-environment perspective of disability and encourages examination of the social systems supporting the individual with a disability. The social system that seems most significant and first in the care of an individual with a disability is that of primary caregiver. The caregiver system becomes a link between the person with a disability and society. Strengthening that system is of particular interest and has potential ramifications for the disabled and for the larger system (Hakim et al., 2000). For the individual with a disability the question becomes, "Who is providing care and in what way is that care organized?" Interestingly, research on "care" and "caregiving" was linked to feminist theory in the early 1980s. The relationship of care was seen as a natural feminine activity although social model of 18 disability activists are concerned this language is objectifying and oppressive (Fine & Glendinning, 2005). Additionally, Fine and Glendinning have proposed a link between feminist theory of care and a social construction of dependency. Although research on these two theoretical perspectives has generally maintained separate identities, Fine and Glendinning linked the two when they discussed the concept of interdependence among the disabled and the caregiver (2005). Dependency is a concept used in the context of the caregiving relationship. The suggestion of providing care has more positive connotations than that of implying a dependent relationship, which suggests negative connection in terms of providing care. Further examining the dependence, independence and interdependence in the relationship of care demonstrates that dependency ties people together and is a normal, necessary social condition. Interdependence suggests the caregiving relationship provides a form of symbiotic benefits to both the care provider and the care receiver (Fine & Glendinning, 2005). In examining gender differences of care, connections can be made between the concepts of dependence and interdependence with care for an individual with Multiple Sclerosis (MS). What is particularly interesting and somewhat ironic in this research is examining the co-constructed realities of caregiving and MS under a historically feminist lens where a majority of patients with MS are women: 78% of informal caregivers are spouses and half of these are male (NMSS 2009b). Therefore, more men are in the role of primary caregiver and one can explore if the concepts of feminist care apply to all caregivers, male or female, in this illness that affects more women than men. 19 Concepts of Care Throughout time, providing care for individuals often became the responsibility of female family members: a wife, daughter or mother in most caregiving relationships. Researchers developed a connection between providing care and feminist theory in the 1970s and 1980s because care liability was seen as a natural feminine activity where the responsibilities and difficulties of women providing care were examined. Unpaid work provided by women for children, husbands, elderly and disabled family members was acknowledged by feminist theorists and coined as the "burden of care." Similarly, an alternative strand of feminist analysis provided the "ethics of care model" in reaction to emphasizing the burdensome features of providing care by focusing on the role and ethics of providing care (Fine & Glendinning, 2005). The ethics of care evolved around an appreciation of providing care and an insight that human experience is founded in a context of interdependence. Feminist pioneer Carol Gilligan provided insight into the concepts of self and one's morality by understanding that relationships provide purpose, understanding and benefit to the participants. Therefore, the ideal of care is connected to relationships when individuals identify needs and assist with those needs within the broad context of their relationship (Gilligan, 1982). Other feminist scholars continued and critiqued Gilligan's discussion by challenging the feminine connection to care. If providing care is part of one's moral development, then why can't masculine moral development occur in the same manner? Masculine moral development is linked to justice, and scholars Noddings (2003), Tronto (1993) and Held (1995) view providing care as an issue of social justice. These scholars believe a relationship of providing or receiving care is characterized by vulnerability and 20 disempowerment and care should be considered along with justice and rights. They further Gilligan's discussion with the inclusion of the ethics of care as potentially part of masculine moral development (Fine & Glendinning, 2005; Held, 1995; Noddings, 2003; Tronto, 1993). The ethics of care, a moral theory, recognizes that individuals require care for many years of their lives, not merely in childhood. Caring enables people to live and progress in life by attending and meeting needs of others for whom they take responsibility. The ethics of care cultivates characteristics of a caring person along with the skills necessary to provide care (Held, 2006). Providing care can be a natural activity that may progress to an obligatory event where goodness, right and wrong, morality and virtue, are all present. Additionally, within the ethics of care, providing care is transformed from a private activity done primarily by women to a wider context where relationships and responsibility are given social value. Furthermore, the ethics of care acknowledges that receiving and providing care is a precondition for social justice because caring relationships are subject to vulnerability and disempowerment (Noddings, 2003). To provide an additional layer for consideration, social construction of gender or "doing gender" as discussed by West and Zimmerman provides an "understanding of gender as routine, methodical and recurring accomplishment" (p.125) where gender becomes embedded into the routine activities of daily responsibility. Certain care tasks are seen predominantly as male and female tasks while providing care activities are assumed by both men and women (West & Zimmerman, 1987). The demands of caregiving are not gender-specific and providing care can be a combination of physical 21 and emotionally demanding work; however, society constructs the concepts of care as principally female events (Lorber & Moore, 2002). Feminist care ethics provide an overarching perspective in thinking about care for purposes of this dissertation. The ethics of care theory focuses on development of institutions that are capable of sustaining caregiving relationships. Caregiving is the behavior that results from moral necessity and development discussed in the ethics of care framework. It is the behavior of providing care or specifically the care relationship that will be explored under the influence of gender in this research. That role of providing care is often overlooked by society although it is completely necessary for survival. Many individuals fill caretaking roles because they have become involved with dependent others and are viewed as acting out of the goodness of their own hearts. In the moral framework generally used by society, which involves individual versus reciprocal conceptions of justice and rights, providing care is undervalued and individual justice prevails. Because caregiving is necessary for well-being and quality of life, exploring the context and relationship of care is critical. Social construction of gender and illness additionally provided a framework to process the study's interviews and allowed for deeper explanation of the gendered care experience. Pearlin's Caregiver Stress Process Model The caregiving relationship has been subject to multiple research studies and concept development. Because people are living longer and families are committed to providing care for their loved ones, many researchers have explored the caregiving experience. Pearlin (1990) examined the caregiving relationship, specifically looking at 22 stress among care providers in the caring relationship among family members. Pearlin viewed caregiving as a behavioral expression of commitment to the welfare of another when providing care refers to particular actions found in established roles of wife-husband or parent-child. At times, this role can expand to occupy a disproportionate amount of the relationship and result in unequally distributed burden and stress response. This stress experience varies among individuals with key characteristics of the caregiver influencing responsibilities and consequences. Age, gender, ethnicity, education, occupation, and economics influence the experience. Primary and secondary stressors as well as mediating conditions seemingly affect individuals in dissimilar ways. Pearlin explained that caregiver stress is not a unitary phenomenon; rather, it is a mix of experiences that vary among caregivers (Pearlin, Mullan, Semple, Skaff, 1990). A conceptual view of Pearlin's Stress Process Model (see Figure 1) was adapted from Pearlin's article, "Caregiving and the Stress Process: An Overview of Concepts and Their Measures:" Pearlin's model, which initially began as an explanation for caregiver strain in family care associated with Alzheimer's disease, begins by understanding that the caregiver's experience is shaped by the background and context in which they experience the situation. An individual's experience with caregiving, family context and socioeconomic status all may contribute to the background and context. Background and context affect the way primary stressors are experienced by the caregiver. Primary stressors may include cognition, problematic behavior, daily living difficulties and other subjective experiences. Secondary role strains, which in turn are affected by primary stressors, involve the additional responsibilities required of the caregiver that are not 23 Figure 1: Pearlin's Caregiver Stress Process Model Adapted from Pearlin's Stress Process Model (1990) directly related to providing care. Economic problems, family conflict or job conflict may all be a part of secondary role strain. Self-esteem, mastery, competence and gain are examples of secondary intrapsychic strains which create an additional layer that contributes to the overall stress of the caregiver. These varying factors ultimately affect caregiver outcomes: anxiety, depression, cognitive difficulties, and physical health (Pearlin et al., 1990). This model is useful in explaining the general process of caregiving that is common and shared across most caregivers regardless of individual illness. Pearlin's model accounts for individual differences in the background and context, which allows for flexibility in use with a wide range of care providing experiences in terms of how individual caregivers process and experience stress. Several studies have explored the use Mediators Background & Context Primary Stressors Secondary Role Strains Secondary Intrapsychic Strains Outcomes 24 of Pearlin's Caregiver Stress Process in application with nursing home care, liver transplants and lesbian mental health respectively, which support the design as a tool for understanding and exploration (Bolden & Newsome Wicks, 2008; Gaugler, Anderson, Zarit, & Pearlin, 2004; Giusto & Van Willigen, 2003). It is well documented that variation in the caregiver experience is common. For example, Mitrani et al. (2006) examined the role family functioning plays in the care process and found that family functioning mediates the relationship between burden and distress in family caregiving situations and supports the idea that family functioning contributes to the caregiver stress process. Successful family coping skills relate to improved family coping and care provision (Mitrani et al., 2006). Goodman, Zarit and Steiner (1997) identified personal orientation, an individual's self-evaluation or self-perception, as a predictor of caregiver strain and also explained how caregiving occurs in the context of wider family involvement (Goodman, Zahit, & Steiner, 1997). Not only does family functioning affect care delivery, individual caregiver differences can also be attributed to differences in providing care, which will be discussed in detail. Gender Differences in Providing Care In 1987, as researchers began looking at the specific relationship between patients and their caregivers, both male and female, potential differences in gender care traits emerged. Specific to MS care, research on gender differences is rather limited. Additionally, although information on gender differences of care in other types of illness is available, discrepancies exist regarding the role gender plays in caregiver strain. For example, Hirakawa et al. (2006) used the Zarit Caregiver Burden Interview to look at 25 gender differences in care and concluded differences in caregiver burden may not exist between male and female caregivers in Japan. This study appears to be more the exception than the rule. Numerous other sources recognize gender differences and consider gender a significant variable in caregiver strain when caring for a failing elderly relative (Goodman et al., 1997; Horowitz, 1985; Pearlin et al., 1990; Stone et al., 1987; Young & Kahana, 1989). In his landmark study discussed earlier, Pearlin (1990) reported the caregiver experience is influenced by key characteristics of the individual caregiver including: gender, age, ethnicity, education, occupation, social status, and financial status. Other research discusses gender differences among informal care relationships and indicates informal caregiving was provided predominantly by women over 65 years of age (Stone et al., 1987). The authors also acknowledge that women face additional responsibilities in relationship to traditional roles that contribute to and increase caregiving strain. For example, women caregivers are more likely to maintain a balance between work and home schedules than their male counterparts. Competing demands, responsibilities and time constraints were additional stresses for the caregivers. Research on providing care for an elderly, frail parent found that sons tend to provide care if a female caregiver is unavailable and are more likely to rely on their own female spouse to provide care for an ailing parent than provide care directly. This research additionally reported that sons provide less overall care and fewer hands-on services as opposed to female caregivers, and that females are more likely to be primary caregivers and provide routine hands-on care such as personal care and daily assistance. 26 Horowitz further acknowledged that caregiving is more stressful for women/daughters than men/sons (Horowitz, 1985). Other research that examined gender-specific care provided to frail elderly spouses and parents suggested that particular characteristics of caregivers influence how a patient responds to treatment and illness. For example, the process of providing care may differ when gender and relationship of care dyads are considered. The research also suggested the kinship of the caregiver affects the caregiving relationship whereas caring for a spouse is different than caring for a parent (Young & Kahana, 1989). Other research has focused solely on personal orientation as a predictor of caregiver strain and discussed personal orientation as feelings of competence, obligation, guilt and reciprocity or more broadly explained as an individual's self-evaluation or self-perception in a social context. A logical connection can be made that gender identification would impact many aspects of an individual's personal orientation (Goodman et al., 1997). Gender Differences in Multiple Sclerosis Care The few studies on gender differences as they specifically relate to MS have shown mixed results (Boeije & Van Doorne-Huiskes, 2003; Ybema, Kuijer, Hagedoorn, & Buunk, 2002). Ybema et al. (2002) showed no gender differences in relationship to caregiver strain. They suggested that perceptions of inequity are more important in understanding the caregiving relationship between caregivers and MS patients. Ybema and colleagues report "perceptions of inequality fully mediate the relationship between marital quality and emotional exhaustion, thus clarifying the psychological process 27 through which quality of the relationship between caregiver and ill partner influences the emotional caregiver burden" (p.86). Both male and female caregivers experienced emotional exhaustion and depersonalization in the caregiving relationship. Study results were unaffected by controlling for a gender variable (Ybema et al., 2002). In contrast, Boeije and Van Doorne-Huiskes (2003) identified gender differences in care as it relates to spouses with MS. They found that care given to a disabled spouse resulted in a sense of duty for caregivers which varied between males and females. The male reaction in the study was "characterized by the perception you have to be satisfied with it, feel obliged to give care and then become resigned to it." (p.238) The female reaction in the study was, "I have to become harder and less self-sacrificing as opposed to men, who do not feel compensated for the care they provide and they suffer for the burden ensuing from it" (p. 238). The caregiver burden was experienced as more intense by women than by men, which resulted from the different responses to providing care. Social Support and MS Care Numerous researchers have suggested that social support for patients with MS plays an important role in the well-being of the patient. In the late 1980's, professionals and researchers were concerned that MS imposed a significant emotional burden on patients and families. However, because there was little research to support this assumption, Devins and Seland (1987) reviewed the existing literature and identified the emotional impact of MS caregiving as one area for future research. They reported: The situation faced by MS patients and by members of their families offers a unique opportunity for the acquisition of new insights and useful data regarding the psychosocial impact of chronic disabling illness, in general, and the ways in which people respond to these adaptively and maladaptively. (p. 373) 28 Their review highlighted a need for research concerning adjustment and the emotional impact on the marital relationship in couples where one partner experiences MS. Couples and families as support systems were affected by the MS, and Devins and Seland acknowledged that others were beginning to examine the phenomena under a general social system lens (Devins & Seland, 1987). Long and Miller (1991) also found that social support provided by families was significant to the well-being of MS patients. They reported that social support was a major factor in adapting to physical illness and noted that lack of family support is useful in predicting a tendency toward suicidal behavior in MS patients. In addition, the authors indicated that "further delineation of families' coping mechanisms, reactions of the family members to people with multiple sclerosis, and inspiration of hope within the family is needed" (Long & Miller, 1991). Long and Miller clearly identified the family as an area for investigation in the arena of social support and needs assessment, represents another disability study looking at the patient's support system in a care situation from a social model perspective. Hakim et al. (2000) also examined the effects of MS on families and social roles and concluded that "MS has a profound impact on the patients' social roles and their relatives' well-being" (p. 288). The authors noted severe disability and cognitive impairment were associated with a negative impact on patients and families and encouraged community organizations to offer assistance to patients and families to reduce social isolation (Hakim et al., 2000). Caregiver strain and stress continue to be the focus of research in the 21st century. For example, Chipchase and Lincoln (2001) examined the perception of strain, noting 29 that caregivers were likely to be a life partner or spouse because of the age of onset of the disease. Caregivers reported various concerns about the caregiving role including home confinement; financial concerns; physical strain; and feelings of exhaustion, anxiety and future pessimism. Furthermore, the authors determined that caregiver strain was strongly associated with memory problems in patients with MS (Chipchase & Lincoln, 2001). Rivera-Navarro et al. (2003) note that the burden of informal caregiving and support for disabled persons has received attention but little information exists on caregiving for MS patients. They described a specific profile of caregivers for MS patients with a high percent of caregivers being female parents. Additionally, this study looked at resources used by caregivers. The authors focused on increasing the knowledge base on MS caregivers and recommended that social services be made available to both MS patients and caregivers alike (Rivera-Navarro, Manual Mores-Gonzalez, & Bento-Leons, 2003). O'Hara (2004) examined the nature of informal care and professional care in MS patients in an effort to identify the incidences and frequencies of caregiving by family members as informal caregivers. The caregivers in this study rated assistance as being given more frequently than did the patients with MS (O'Hara, De Souza, & Ide, 2004). These perception differences between caregivers and patients are of interest in the present study and I will explore what role gender may play in shaping these perceptions. As advances in medication management occur, a new generation of MS patients has emerged. Schwartz and Frohner (2005) state, "The existence of therapy for a disease that was previously considered unpredictably degenerative with no treatment is encouraging." (p.207) The current generation of patients is encouraged to continue life and family and expected to function with less disability for longer periods of time. As 30 patient care and outcomes improve among individuals with MS, informal in-home care will increasingly be utilized. Schwartz and Frohner's finding that individuals with lower levels of social support--including family support-- had a reduced quality of life reinforces the importance of supporting family caregivers in order to improve quality of life for patients. Caregivers and care receivers may or may not experience the care situation similarly. For example, using Margaret Urban Walker's expressive-collaborative view of morality as a theoretical framework, Abma et al. (2005) described a conflicting story of expectations and responsibilities between patients and paid caregivers and found the discrepancy between caregiver and patient reports was similar to conceptual differences experienced among nonprofessional caregivers. In contrast to the Abma et al. study, Pakenham's work (1998) focused on couple congruence in adjustment to multiple sclerosis care receiver-carer dyads and concluded that assisting the patient and caregiver to cope with the stress of the illness as a dyad results in more effective treatment. Pakenham stated, "…findings support the utility of both the coping congruence and average level of couple coping concepts in explaining collective and individual adjustment in care receiver-carer dyads"(p. 275). King and Arnett (2005) furthered the concept of couple coping congruence by reporting that couples who report higher levels of depression experienced worse dyadic adjustment. Therefore, care perceptions may or may not be experienced similarly. In summary, social support provided by families and significant others is important to the overall well-being of an individual suffering from multiple sclerosis as well as the caregiver. Utilizing a systems theory approach in looking at the relationship of 31 care and dependency supports the connection and interdependence between caregiver and care receiver. There is, however, a discrepancy between perceptions and experiences of care between the caregivers and patients with respect to care, support and needs. Little qualitative research is available on the subject of perceptions of care and support needs of unpaid caregivers. Furthermore, a relationship connection develops within the care dyad as interdependent care, with the care giver and care receiver both potentially depending on each other for various care activities. Traditional feminist perspectives of care may or may not be altered in the context of MS where men oftentimes take on the role of caregiver. Benefits to the Community Unpaid-nonprofessional care benefits the community by reducing expenditures and offering social connections for the individual with MS. In terms of financial benefits, it is difficult to measure cost savings to the community by care that is provided by loved ones in the patient's own living environment. A comprehensive assessment of the costs associated with MS in the U.S. conducted by Whetten-Goldstein et al. in 1998 reported that "most of the cost of MS was borne by MS individuals, families, and friends even though 98% of the respondents had some form of health insurance" (p. 424). A major component of cost in MS relates to both earning loss and informal care (Whetten-Goldstein, Sloan, & Kulas, 1998). Providing in-home care reduces the dependency and cost on the system which may benefit the community. While the cost of in-home paid care varies greatly, the Bureau of Labor Statistics reported that in May, 2008, the median 32 hourly wage of home care aides was $9.22 and about 1.7 million jobs were held by home care aids (2010). In addition to financial rewards, Cummins (2001) described personal and social benefits to the individual with a disability as well as the economic benefits for society through the utilization of unpaid-nonprofessional carers. Not only do family caregivers provide the patient with a generally improved quality of life and quality of care, the community benefits financially through the use of free care provided by families, most often a wife or mother (Cummins, 2001). Care Needs Caregivers report unmet demands which negatively affect their ability to provide care for their loved one. Financial needs are also a concern along with understanding specific needs in the care of MS patients. Furthermore, support measures for the caregiver are also in need. Caregivers are circumstantially placed in the role of caregiver and therefore could benefit from support. Buchanan et al. (2009) reported that over half of those providing informal care to MS patients need help finding time for themselves and nearly half need help managing emotions and physical stress (Buchanan, Radin, Chakravorty, & Tyry, 2009). Sato, Ricks, and Watkins (1996) studied the needs of caregivers of patients with MS. The respondents reported their physiological and self-concept needs were being met but identified needs in performing roles and responsibilities. The researchers suggested conducting in-depth interviews with caregivers while observing daily activities to deepen 33 the knowledge base of caregivers as support systems and identify caregiver needs. Individuals who provide care are in need of relief from caregiving duties and could benefit from assistance in performing role functions and life responsibilities, for example, information sharing, advice giving and receiving and the provision of appropriate services to succeed in their role. Sato et al. also identified the need for caregivers to establish and maintain a connection with social services. Therefore, community support would benefit caregivers of MS patients. Participation in a community support group is an excellent way to deliver needed support and information to the caregivers of MS patients (Sato, Ricks, & Watkins, 1996). Nodder et al. (2000) explored the care needs of MS patients and identified the need for coordination of services associated with the illness, family support and community support. They acknowledged that MS is a condition where the treatment and interventions impact the lifestyle of not only the patient but the family as well. Costs of MS MS is a costly disease to manage and many of the costs are private in nature. The earnings lost, the cost of diagnosis and treatment, and the cost to the family are extremely burdensome. A family may suffer huge financial loss over the course of the disease and community connections to assist the patient and the family are needed (Nodder et al., 2000). Whetten-Goldstein (1998) estimated that the annual cost of MS was over $34,000 per person with a conservative total lifetime cost per case of over $2 million. The major components of cost were earnings loss and informal care. At that time, health insurance 34 covered about 51% of costs for services excluding informal care (Whetten-Goldstein et al., 1998). These cost estimates do not account for recent advances in MS medication. The cost of medication management has increased tremendously in recent years, thus increasing the need for community assistance and linkage. With the recent addition of self-injectable MS drugs, the cost of care has increased over 35% per patient from $9,515 per patient in 1995 to $12,879 per patient in 2004 and 64.8% of that cost is attributed to prescription drugs (Kunze, Gunderson, Gleason, Heaton, & Johnson, 2007). The current cost of MS care is being studied with an examination toward cost-effectiveness in more recent publications (Noyes et al., 2011). Disease-modifying therapies in the United States can cost upwards of $48,000 annually (Goodman, 2012). This has contributed to the ongoing discussion about health care cost in the United States. Other articles discuss the cost of MS in other nations; however, their cost is lower than the cost in the United States so transferring this into US dollars is not reasonable. These other nations have some form of national health care; therefore, their costs are lower than in the U.S. (Russo et al., 2004). National Multiple Sclerosis Society supports an overhaul of the U.S. health care system and providing health care cost assistance to individuals with MS. Recent estimates by the NMSS put the cost of MS, in 2007 dollars, at approximately $70,000 annually (Krishnan, 2009). Other Illnesses Caregiving has been examined within the context of a variety of illnesses including AIDS, dementia, Parkinson's disease, Alzheimer's disease, mental illness, and 35 cancer. Similarities exist in caregiver strain, stress and support needs. However, differences exist in the particulars of the illness, too. Caring for an elderly person with a significant illness differs from caring for a middle aged person with multiple sclerosis. Care responsibilities and family burdens vary with each illness as well. MS symptoms and severity vary greatly, so uncertainty becomes a part of the experience. MS develops at the time when individuals are in the prime of their life, raising families and building careers. MS interrupts the usual life course, which can result in emotional difficulties for the patient and family. In examining the concepts of care in illness, the common theme among caregiver needs for all illnesses is social support. Social support is beneficial to both the care receiver and the caregiver and provides stress buffering properties (Monahan & Hooker, 1997). Support measures could reduce strain when utilized by caregivers. For example, research on caregivers of stroke patients found that the potential for future caregiver strain could be identified and that support measures, such as support groups, respite care, education, resource management, financial information and identification of resources, could be enacted in a timelier manner (Blake, Lincoln, & Clarke, 2003). Caregiver Benefits Pakenham (2005) reported that caregivers of MS patients experience multiple benefits in caring for a loved one with MS, despite the chronic sorrow often associated with providing care. Personal growth, greater insight, caregiving gains, strengthening the relationship, appreciation, health gains, and a change in priorities were all reported in relation to providing care. Furthermore, Pakenham reports that dyadic intervention 36 approaches are more effective at providing support to the caregiver/care receiver dyad than supporting members of the dyad separately. Patients with MS displayed a positive correlation between social support and quality of life measures. Social support had a significant contribution to the Quality of Life (QOL) measure. Indeed, people who perceived having more social support reported better overall mental health (Schwartz & Frohner, 2005). Suicidal tendency in patients with MS has also been affected by decreases in relationships that exhibited family support. Long and Miller (1991) noted that an innate function of being a care provider is to benefit the one needing care and that social support improves quality of life measures and decreases suicidal tendencies. Their study found that although there were complex factors involved, family support was most useful in predicting suicidal tendency in people with MS. Summary of the Literature Review Given the researchers' interest in the subject of MS and non-professional caregivers, the article by Fine and Glendinning (2005) became the starting point of this dissertation by linking care and dependency to a feminist theory of care and a social construction of dependency. The ethics of care theory was examined by looking at such scholars as Gilliagan, Held, Noddings, and Tronto. This in turn lent itself to understanding the concepts of general caregiving and examining the works of Pearlin (1990) in his Stress Process Model. Goodman, Zahit, and Steiner (1997) additionally described personal orientation as a factor in caregiver strain. 37 Boeije and Van Doorne-Huiskes (2003) focused specifically on gender differences as they relate to MS caregiver strain, and Devins and Seland (1987) identified the need for future research in the area of providing support to MS caregivers. Long and Miller (1991); Sato, Ricks, and Watkins (1996); and Hakim et al. (2000) offered valuable insights in the provision of care to MS patients. Most recently, Schwartz and Frohner (2005) and Pakenham (2005) addressed the importance of informal care with a new generation of MS caregivers and discussed the need for future research in the area of unpaid-nonprofessional care of MS patients. This literature review discussed the nature of caregiving and how caregivers experience this stressful situation. That relationship for MS patients needs to be examined in more detail because it is an underdeveloped area of knowledge, and a qualitative study will provide an opportunity to develop the concepts of care and dependency for this illness while allowing both the care provider and care recipient to co-construct the experience. Pyramid of Care In looking at the integration of theories for this research, Figure 2: Pyramid of Care, is helpful is creating a visual representation. The social model of disability is the starting point in understanding that society has responsibility in creating an environment hospitable to the disabled individual. Disability has a particular social meaning which implies need, care, accommodation and adaptation. Pearlin's Stress Process Model helps to understand and explore differences in the care experience with particular attention to the role that gender as well as other life factors play in understanding the experience of giving (care) and receiving care (dependency). A deeper understanding is 38 Figure 2: Pyramid of Care Care Event Gender Construction of Care Feminist Care Theory Ethics of Care Social Model of Disability Pearlin's Stress Process Model Care and Dependency 39 provided by using gender construction theory. This framework is useful to evaluate behaviors necessary for disability care which fall outside traditional gender expectations. Feminist care theory/ethics of care assists the research in understanding that providing care is a natural life expectation and activity typically assigned to women. People are defined by their behaviors. Therefore the care event is the pinnacle to understand the gendered experience of care in this research. Behaviors outside of society's normal gender construct result in a source of personal conflict for both care givers and care receivers.CHAPTER 3 METHODOLOGY Introduction In Chapter Three, I reflect on my personal experiences as a caregiver to my husband who has MS and how my unique perspective allowed me access into the participant's experience. My intent was to use my experience as an advantage in connecting with the participants, which allowed a rich, deep expression by the participants. Connecting with the participants potentially allowed for greater sharing. Additionally, in this chapter, I explore the nature of the constructivist research paradigm and how this research design helped me develop a co-constructed reality of the perceptions of care with both the caregivers and care receivers. The research design is outlined, with attention to Institutional Review Board approval, sampling, convenience, data collection, interview schedule, data analysis and study strengths and limitations. Personal Perspective My interest in unpaid-nonprofessional caregiving for patients with multiple sclerosis developed out of my personal experience because my husband has MS and I too am an unpaid-nonprofessional caregiver. My research questions arose from my general 41 interest in the subject of MS and moved to a specific focus on caregivers as I conducted initial steps in my literature review. I became interested in articles that focused on the caregiving experience and from there I noticed a gap in the existing research. Although research on general care and caring for patients with other illnesses was available, research focused on MS caregivers' experiences was generally lacking. Therefore my questions for this research arose directly from my personal experience and my review of the literature. MS has been a part of my life for 18 years. I felt as if others had more understanding and responsibility to the disease and generally thought my husband's illness was well contained. I felt we coped with the situation quite well. I know now that caregivers and patients learn to adapt to the challenges using a variety of available resources. I also understand that gender is a factor in this situation for both caregivers and patients, however; it is one of many factors that contribute to patient and caregiver outcomes. My use of self in this research study is of particular importance in that I too can relate and on some level understand unpaid-nonprofessional care experiences. My husband, John, a board certified internal medicine physician and a licensed pharmacist, has multiple sclerosis. MS has been a part of our lives for over 18 years. John received his diagnosis in November of 1993 following our engagement. We married the following March and life proceeded. MS episodes occurred several times, making unplanned, random visits that changed our life plans. During our fourth pregnancy, John suffered his most significant exacerbation, extensive vision impairment in his left eye, which resulted in total loss of vision in that eye. During previous episodes of MS, John had vision 42 problems that left him with central vision loss in his right eye. The lack of vision was extensive and required him to leave his work as an emergency room physician. John was unable to complete a variety of tasks required of a primary care physician and he spent 3 years at home on disability. It was during that time that I was able to return to the University of Utah and pursue my Ph.D. studies in social work. I have a special connection with spouses and caregivers of individuals with MS. I personally understand the random attacks that strike when no one is watching. I live the experience of compartmentalizing MS, tucking the disease away in a box to live life and take care of my family until the disease rips from the box and shows itself in such a bold manner it attacks the flow of our family where we must stop and respect the power of the disease. At any moment the courses of our lives may change and we are forced to proceed in a new direction as the MS demands. One day we are preparing for the birth of a fourth child and the next my husband has gone blind. Another moment we are at a party when my husband excuses himself and collapses in the bathroom with intense vertigo. We recover, we move on, we forget and it strikes once more. I feel powerless to the disease and I hate the loss of control that is a part of this situation. My coping with the disease resulted in my deciding to turn a difficult situation into an opportunity to complete my Ph.D. and achieve a long desired goal. My husband's time off work allowed me the support and opportunity to work on my studies. A person very close to me suggested that I must be happy that my husband lost his eyesight because it allowed me the opportunity to work towards my Ph.D., I told that person that I would never be happy that my husband lost his eyesight, but that I could truly understand that sometimes people find the strength to make something good come out of something bad. When I began 43 thinking about possible research topics, it seemed fitting to focus my research on multiple sclerosis and the unpaid-nonprofessional caregivers who share some of my experience. John started back to work in July of 2008 as a professor of medicine at Wright State University where his vision is not needed nor required. He is director of the residency clinic and he supervises medical residents providing treatment in a free clinic setting. Wright State University is a leader in providing necessary accommodations to assist people with disabilities to return to employment. I struggled with whether to share my personal experience with the participants in my research, and after much thought and deliberation and a review of relevant research, I decided to do so. Padgett (2008) discussed studying the familiar versus the unfamiliar and identified two advantages of remaining with the familiar in a qualitative research study. The first advantage is developing rapport with the participants. The second is providing a jump start in knowledge acquisition. Padgett also notes that a disadvantage is the risk of being too close to the subject matter. Knowing too much about a subject can create blinders and lead to prematurely assuming the answers (Padgett, 2008). Examples of outstanding qualitative studies conducted by researchers with a close personal connection include research conducted by Irving Zola on disability (Zola, 1983), Catherine Riessman on divorce (Riessman, 1990) and Arlie Hochschild on working parents (Hochschild & Machung, 1989). Anthropologist Robert Murphy suffered from a neurological condition that gradually restricted his movement and resulted in his death. He made tremendous contributions to disability studies with his work, The Body Silent. Toward the end of his life, he used his "own intimate experience of disability and his intellectual acumen as an 44 anthropologist to broaden our understanding of human behavior (Goldin & Scheer, 1995; Murphy, 1990) I believed the use of my close personal connections would provide transparency by allowing the participants a connection to the researcher and elicit a shared experience among participants. It is my understanding that being an insider to this disease will foster and encourage participants to feel comfortable sharing their experiences with an individual who has shared some of the same burdens. It is important to note that my husband's experience with MS is not nearly as devastating as other's experiences. John has a strain of MS that has not been as progressive or as debilitating as other people typically experience. His MS has attacked his vision significantly, but he remains able to walk, move and meet the demands of daily living with minimal assistance. Many others with MS are not as fortunate and there are others who experience fewer symptoms than my husband. No experience of MS is typical. There are risks and concerns of sharing this information with participants. The most probable challenge of sharing this information was that the participants could assume a shared understanding and choose to not offer as complete an explanation to the phenomena being studied. I was willing to answer questions the participant had about my experience with MS, although I used my clinical skills to bring the discussion back to the participant's experience. My goal was to make the participant feel comfortable in the interview with myself as the interviewer while bringing the discussion back to the interviewee. I exerted limits with the participants and professional boundaries within the interview if the participant becomes overly concerned with my experience. I specifically told participants that I was not there to talk about my situation, but rather that I was 45 interested in hearing about their experience for the research. I remained cognizant of this potential complication and stayed reminded to probe more deeply in order to develop rich explanations. My role as a clinical social worker for 14 years undoubtedly assisted me in conducting my research interviews and developing understanding of the participant's experience. I was able to use my clinical skills to direct the focus back to the participant and encourage a deep exploration. In order for me to adequately process this experience, I kept a self-reflective journal. I used this journal writing during my time as an interviewer to help ground myself in the research, and I was able to reflect back on my journal notes as I analyzed the data. I was aware that I was not the center of the research inquiry although my prior experience brought a richness and depth to the situation. I was careful not to assume understanding; rather, I used a third interview with both the caregiver and the care receiver to complete extensive member checking, and asked participants if the themes resonated with their experience. Finally, I offered participants the opportunity to review their interview transcripts for authenticity to provide additional member checking. Personal Growth Over the course of my research my, husband's symptoms have gotten worse. At times the interview conversations hit close to home, especially when I heard about similar physical limitations. Mostly the participants were provided with a connection to me as the researcher and forced me to process my own emotions surrounding this illness. I often left interviews with a range of emotions, from feeling overwhelmingly sad to inspiration. MS is isolating. Many people I spoke with did not know others with MS nor had they had 46 much opportunity to speak with another patient or caregiver. With MS the mere act of living with the illness forces people to isolate. Using self in research has been successfully conducted by other researchers, including Zola, Riessman, Hochschild and Machung and Murphy as noted above. This was a decision I made early on in this process, and I believe it made for a richer experience. Having a husband with MS allowed for immersion in the field and a connection to the participants. At times the sadness of the stories was especially heartfelt and concerning to the researcher, and at other times the participants shared a deeper side of their experience. As a researcher I was able to use language the participants understood. Participants felt safe because we shared a specific connection to this situation. I understood the available medications and the delivery system because my husband has taken four of the differing types of medication. I understood patients when they talked about taking Tysabri ® (natalizumab), a monoclonal antibody that requires I.V. infusion every 28 days administered at a medical facility. I knew that Copaxone® (glatiramer acetate) requires self-injections daily, that Rebif® (interferon beta-1a) requires injections three times a week, and Avonex ® (interferon beta-1a) one time a week (MSLifeLines, 2012). Participants were interested in what medicine my husband took and how it was working. I am also familiar with the side effects of all the medications my husband takes. Side effects from interferon beta-1a medications were more difficult for my husband. He experienced flu-like symptoms after each injection that lasted until the time of the next injection. Participants asked if my husband experienced a particular symptom that they themselves experienced. I carefully reminded myself to not assume understanding but allowed the participants to direct the information 47 and share their experience. When asked, I answered questions but I did not offer unsolicited information. I was able to share some knowledge of the illness and my personal experience if asked. Several participants asked questions, some did not. Constructivist Research Paradigm The purpose of this research was to explore, develop, and understand perceptions of care between care providers and caregivers of MS under the lens of feminist care theory/ethics of care within a social model of disability. In order to explore phenomena of care, gender differences in care and perceptions of care, qualitative research was utilized exclusively. Qualitative research seeks to develop and understand the dimensions of a phenomenon specifically as it relates to the human experience and the world. Qualitative research generates ideas and hypotheses by understanding that reality is understood through the constructs of individual experience. Qualitative research creates the space which allows the voice of the participants to be heard, developed, shared and understood within a context of developing commonalities among participants (Lincoln & Guba, 1985). The research paradigm for this dissertation was a constructivist paradigm. The research examined perceptions of reality in the interaction of caregiver and care receiver dyads. This interaction was subjective. The nature of reality (ontology) for the project was constructivism, i.e., co-constructed realities between caregiver and care receiver. The nature of knowledge (epistemology) was interpretative and dialectical as interaction is subjective and shaped by values and experiences. This research sought contrasting and opposing viewpoints among the participants. The way of knowing (methodology) for this 48 project was dialogue that is transactional and subjective. Knowledge was developed by interactions between individuals and among individuals. Knowledge was sought through dialogue with the participants (Lincoln & Guba, 1985). Using a constructivist paradigm, the main research question (what is your perception of care?) was asked of male and female patients with multiple sclerosis and their male and female primary caregivers. The research sought to identify how the reality of care is being co-constructed by the caregiver and the patient with specific regard to gender perceptions. Knowledge from this research was developed by co-constructing the care experience. Both caregiver and patient views were necessary and significant to formulate understanding of the care experience. Both provided an understanding to the question of perception. One reality does not exist; rather, the perception of reality exists on both sides of receiving care and giving care. The epistemology considered that caregivers and patients may have contrasting views, and the research data were interpreted with the understanding that individuals' experiences may share multiple meanings. The data were interpreted by arriving at a synthesis of meaning; thus, the interpretation is dialectical in nature. Furthermore, the research focused on understanding if traditional gender roles affect the care situation. Traditional gender identities are society's defined roles of acceptable and socially appropriate behavior that is attached to men and women based on their sex. Traditional gender roles depict women as caring and nurturing and men as aggressive and competitive. Were there gender differences in providing care and receiving care among patients with MS? Finally, the research explored caregiving under 49 the lens of dependence, independence and/or interdependence in the relationships as discussed in Fine and Glendinning's work on care and dependency (2005). Research Design Research Questions This qualitative research study explored the phenomena of the gender relationship in care for multiple sclerosis patients by addressing the following research questions: 1.) How do caregivers and those diagnosed with MS experience the caregiving relationship? 2.) Does gender influence the provision of care and perceptions of care in providing for patients with multiple sclerosis? A secondary research interest of care needs and social support was additionally explored with the following research questions: 3.) What are the care needs of both the MS caregiver and care receiver? 4.) What is the role of social support in the care relationship? I conducted 30 interviews with 10 couple dyads, 5 dyads with a female patient and 5 dyads with a male patient. Interviews with the caregiver and care receiver were conducted individually and a follow up interview with both the caregiver and receiver was also conducted. The follow-up interview was used to attempt to co-construct the care experience within the couple dyad. Initially, the individual interview questions included queries that are specific to the caregiving responsibilities. The researcher asked both the caregiver and care receiver the following questions individually: 50 Interview Question Guide Research Question: How do caregivers and those diagnosed with MS experience the caregiving relationship? Interview Guide: Tell your story of MS. How would you rate the illness in terms of severity? How did you deal with the initial diagnosis? How did your caregiver deal with the initial diagnosis? How does caregiving/receiving affect your relationship? Tell me about the care you give/receive. Research Question: Does gender influence the provision of care and perceptions of care in providing for patients with Multiple Sclerosis? Interview Guide: What is it like to be a man/woman with MS? How do you care for each other? How do you care for yourself? How are you dependent on one another? How are you independent from one another? Research Question: What are the care needs of both the MS caregiver and care receiver? Interview Guide: How many hours of care are given/received during a day/week? 51 What types of care tasks are being provided by the caregiver? How is the family unit involved in the care? How would you rate you or your partner's care needs? What is needed in terms of your caregiving/receiving? What would assist you most in your role of caregiver/receiver? What needs do you have that would assist you in the care relationship? Research Question: What is the role of social support in the care relationship? Interview Guide: What are the other types of care the patient receives aside from the care provided by the primary caregiver? How is the family unit involved in the care? Describe any support you receive outside the primary family unit, both professional and nonprofessional. 3rd Interview Follow-up Questions: This interview served as a time for clarification and provided the participants with an opportunity to member check. Individual participants received initial interview transcripts in the mail for review. Participants were asked if they wanted to change or clarify any part of the transcript. One couple exchanged transcripts and read their partner's interview. The remaining chose not to exchange. Several couples did not take advantage of this opportunity as a time to elaborate, referring back to the initial interview as "that's pretty much it," Others engaged in a conversation about their situation with one another. The 52 third interviews primarily served the function of member checking and prolonged engagement. Institutional Review Board This research project was submitted and proposed to a dissertation committee chaired by Dr. Christina Gringeri for review. Following the committee's approval, application was made to the University of Utah's Institutional Review Board (IRB) and research approval was granted. Research occurred following all IRB guidelines. Neuroscience Research Center in Dayton, Ohio accepted University of Utah IRB approval and did not require additional IRB application or approval. Sampling Ten couples were recruited for this study. Each participant was interviewed individually, followed by a joint interview of the caregiver and care receiver, resulting in three interviews per couple dyad for a total of 30 interviews. Lincoln and Guba (1985) describe techniques used to establish and improve credibility: prolonged engagement, persistent observation and triangulation. Multiple interviews with each couple dyad provided prolonged engagement and helped establish credibility. In order to achieve gender balance, five of the couple dyads had a male patient with MS and five couple dyads had a female patient with MS. The couples were selected from the patient population at Neurology Specialists in Dayton, Ohio. Neurology Specialists employs three neurologists and two research assistants and treats a large number of patients with MS from the greater Dayton area. Additionally, Neurology 53 Specialists houses the Neuroscience Research Center, which provided a convenient and familiar location for the interviews to occur. The research assistants from the Neuroscience Research Center assisted in sampling of potential interviewees for this research project. The sample was a convenience sample. I was on location at the clinic to secure the 10 couple dyad participants. The participants were recruited with the assistance of three research assistants at Neurology Specialists. Research assistants approached all individual patients when they presented for their clinic appointment. Each patient received a flyer from the research assistant that explained the research and his /her potential participation and involvement. Patients who were interested in participating in the study met with the primary researcher to determine if they met the eligibility requirements, understood their scope of involvement and would agree to participate in all interviews. If both the care provider and patient were present, available and under no time constraints, the initial interviews occurred separately at that time and in the clinic setting. Patients without a care provider present were asked to inquire with their care provider and contact the researcher if both were interested in participation in the study. Interviews for those individuals were scheduled following subsequent contact from the participants. All interested participants were assigned a pseudonym and placed into subcategories of male or female patients or caregivers. Joint follow-up interviews were scheduled after the first round of interviews had been completed and transcribed. Demographic information was gathered prior to the start of the interviews with the use of a questionnaire (Appendix A). Demographic information included gender, age, age of MS onset, relationship to caregiver, socioeconomic status, living situation, 54 education level, available family and outside support, involvement in formal support services, employment, average hours worked, and additional family commitments. Inclusion and exclusion criteria were kept simple to maintain the integrity of convenience sampling. At least one of the participants in the couple dyad had to have a diagnosis of MS to be included in the study. The second criterion was simple as well. In order to provide the gender differences needed to explore this phenomenon, five MS patients were female and five were male. It should be noted that individuals with significant impairment may have chosen not to participate in the study because of the stamina required to sit and talk for extended periods of time. Convenience Sample Although it is the least rigorous technique, convenience sampling or availability sampling is often appropriate for social work research, particularly when researchers are exploring a person-in-environment perspective of a particular set of social problems, which is the case is this study. The decision to use convenience sampling for this research is based on accessibility, ease, speed and cost savings. According to Weiss (1994), convenience sampling is a valuable technique that can provide important information for qualitative research. The limitations of convenience samples include a reduction in scientific precision, limiting information and credibility (Marshall, 1996; Weiss, 1994). Sampling in this manner could potentially bias the research with research participants who are seeking medical care and thus are experiencing complications from the disease. Neurology Specialists and the Neuroscience Research Center provide a service of monthly 55 medication appointments which helped reduce the potential sick sample bias. A number of patients at this clinic are present for a regularly scheduled IV infusion. Patients who receive this particular treatment must present at the clinic every 28 days for an infusion, regardless of health status. Including these patients, who are in the clinic for a routine medical visit rather than for a sick call, reduces the potential bias concern of a sicker patient sample. Data Collection Semi structured interviews were conducted with each care receiver and care provider. These individual interviews allowed the participants the opportunity to construct the experience of care and provide an opportunity for communication and exchange of dialogue between the participant and the researcher. A third interview was conducted with both members of the couple dyad present to provide an opportunity for the participants to co-construct the care experience. This interview allowed participants to review the transcripts and make necessary changes and provide member checking. Lincoln and Guba (1985) explain member checking as a critical technique for establishing credibility, and in this case it allowed for testing of the gathered information between the couple. Additionally, this final interview offered confirmability of the previously gathered information and further established credibility by allowing for a prolonged engagement and an additional opportunity to interact and gather information from the participants. At the time of the each interview, participants were compensated with a $25 gift card from a local all-purpose store. Participants were made aware of the incentive prior to 56 enrolling in the study. The gift card was a small token of my appreciation for their participation in the study and their willingness to share their stories with me. Interviews In-depth, individual, semi-structured interviews were conducted with the care provider and the care receiver and transcribed verbatim. A third interview was conducted with the dyad and transcribed. The interviews lasted 60 to 90 minutes and took place at Neurology Specialists, the Neuroscience Research Center or at another mutually agreed upon location. Both individuals in the dyad needed to agree to participation before starting the interview process. Some participants had difficulty with mobility so reasonable accommodations were made to reduce travel burden for the participants. Each participant answered detailed questions about caregiving and receiving, stress associated with illness, and stress associated with receiving care and providing care. Furthermore, perceptions of care were explored to surface gender differences between caregivers and care receivers as well as similarities. Follow-up Interview The third interview with both care partners allowed the researcher the opportunity to better understand the experience and provided the opportunity for member checking of participants' original statements. Ultimately, the third interview was used to gain a deeper understanding of the data and establish another opportunity to engage with the participants and observe their interactions as a couple. No serious disagreement occurred in the third interview although minor disagreement was handled by careful representation 57 of each participant's individual expression through member checking where I specifically acknowledged the disagreement. Prolonged engagement and persistent observation with the participants helped to establish credibility, and the constructivist research paradigm was developed in more detail at the third interview. Both care partners were encouraged to discuss and exchange ideas about their care situation, and participants provided feedback concerning this shared experience. Members both agreed and disagreed with the comments made by their partner. During the third interview, participants were encouraged to develop a co-constructed reality of the experience that mutually described their experience. The third and final interview took place at a separate time and location, which allowed for a triangulation of sources by examining the information at different points in time. Additionally, having 10 separate dyads to interview provided rich content of sources by allowing for comparison of people with different viewpoints. I thought the follow-up interview with the couple would be especially beneficial in this process, but participants were more comfortable speaking alone about the situation as opposed to speaking about the illness in front of their partner. Individual interviews were more elaborate as opposed to joint interviews. It felt as if participants had shared their story with me and did not really have more to say at the joint interview. I tried to elicit a deeper understanding, but at times I was met with short answers or looks toward partners to see if they would respond. I respected the nonverbal clues and allowed the participants to share what they wanted. My thought was to provide prolonged contact with the participants to enrich the information, but I am not sure if much additional information was gained by the joint interview process, especially because some 58 participants chose the coping technique of denial and tried not to speak of MS with their care partner. Several of these interviews felt forced for the participants. One joint interview did yield a discussion about perception differences. In that interview the participants allowed one another to read their transcripts, which facilitated the discussion. I let participants decide if they wanted to share their individual transcripts with their partners. Each individual transcript was mailed to each participant individually. I am not sure how many allowed their partners to read them or how many read them themselves. In one case a male caregiver may have been illiterate. Data Analysis All interviews were audio taped and transcribed verbatim. The qualitative research computer program, N Vivo, was utilized for purposes of coding, data management, gathering themes, and evaluation. Participants were presented with a copy of the transcripts and given the opportunity to change or clarify answers. I completed NVivo training in the summer of 2010 and developed understanding of the computer program and additional insight into processing the information. I compiled and presented the demographic information of the research participants in a table and paid particular attention to providing anonymity for the participants. As already noted, participants were given pseudonyms which were used in the reporting of results. Following each interview, the researcher processed the experience through journaling where significant ideas, themes and thoughts were recorded. Upon completion of the interviews, raw data, process notes and analysis summaries were examined by the 59 researcher. Emerging themes were developed. The experiences were discussed in detailed description as a way to achieve transferability. Care was taken to describe the phenomenon in detail as shared perceptions emerged. The third interview with the dyad provided an opportunity to help me interpret data-that is, how the dyad themselves interpreted their original interviews. My hope was that the third interview would help develop accurate understandings of the experience with the assistance of the dyads interpretations. Interviews were than transcribed and coded using NVivo software. Themes were coded directly from the transcripts as opposed to listing the themes and looking for statements to fit. The interview transcripts guided the findings. After all interviews were coded; the researcher returned to the identified themes and developed the chart of how frequently ideas were discussed in the interviews. I decided to let the participants' interviews guide the development of my connection points, or as termed in NVivo, "nodes". There were a few nodes that had only one source and reference. There are others that were discussed in as many as 21 of the 29interviews. I used NVivo to highlight text and link those similar items. I then relied on more traditional methods of converting those nodes into a printed document. I color coded the documents by gender and went through every theme looking for gender connections and patient and caregiver connections. Writing became a way to weave the connections and share the participants words, some awkward some eloquent. 60 Strengths and Limitations of Study Design Using this particular study design helped describe the complex situation of giving and receiving care for MS patients under a feminist care theory perspective and allowed for an understanding and description of an individual's personal experience. This allowed the researcher to develop an understanding into the phenomenon of care in MS and develop a reality that was co-constructed and derived from the participants' own perceptions and experiences, and the meanings they attribute to both. The researcher was granted access to a mid-size neurology clinic population, therefore, strength of the research is that a convenience sample using inclusion and exclusion criteria provided a purposive sample from the population as opposed to other types of sampling procedures. This type of sampling is not purely convenience sampling because the participants were chosen based on gender and illness not just who came to the clinic. This allowed for a concentration on issues of gender and excluded other factors such as race. Having access to a large number of individuals with MS provided a generous sample size for this research. This large population was reduced to the desired so the researcher could describe cases in detail and provide individual case information. Personal experience with MS may be both a strength and limitation to this particular design. As I carefully kept in mind that I was not the center of the research, my intent was to use myself to bring a richness and depth to the situation. Self-reflection and journaling provided an opportunity to explore the use of self freely. The strength of my experience allowed me to gain wider access to information in order to co-construct the reality of this particular social situation. Results of qualitative research are open to the 61 researcher's personal biases; therefore, member checking was an important and deliberate part of the research process. Other limitations of the study design are the time constraints required to interview and process the information. In-depth interviews require sufficient time and individuals with this disability may not have the physical capacities to endure long periods of sitting and talking. Those individuals may have self-selected out from participation in the study. Additionally external validity is limited and the results may not be generalized to other people in other settings. Learning Process In this process, I learned from the literature review, the research design and the conceptualization of this research. Mostly, I learned from the participants. Strangers allowed me into their life situation, answered my questions and shared their stories. The participants were gracious, kind and informative. I was able to use the transcribed interviews with the help of NVivo software to make connections and develop themes among the participants. I read each and every transcript and coded after reading a particular idea or theme. I was somewhat overwhelmed with the volume of information that took several months to obtain. I did not have preconceived ideas of what I was attempting to find. Pearlin's Stress Process Model offered a framework for understanding the entirety of the caregiving situation, including the individual differences that each couple brought to the situation. The model was utilized in discussing the caregiving situation for families with MS and will be further discussed in Chapter Five. Two additional sources arose 62 through the course of the interviews and processing stages, Kübler-Ross stages of grief and Zusne and Jones concept of magical thinking will both be discussed in Chapter Five. Specifically, Kübler-Ross' stages of grief helped explain the emotional processing that is a part of surviving MS and MS caregiving. People go through various stages in processing and those stages correlate with the stages of grief and loss. Zusne and Jones magical thinking concept further explains bargaining and acceptance. (Kübler-Ross, 1969; Pearlin et al., 1990; Zusne & Jones 1989) CHAPTER 4 RESULTS Introduction Gender does affect the MS caregiving experience, just maybe not the ways I originally thought. I intended to prove that caregivers and patients would connect themselves to certain tasks. Those responsibilities would associate with traditional gender roles and participants would utilize available resources in taking care of responsibilities. What I found is that not everyone has access to resources and availability to certain resources. Use and availability of time, people and finances are a part of understanding the entire care dynamic. Gender plays a significant part in understanding the care dynamic in that gender shapes perspective and understanding of MS within the social constructs of gender. Gender is the lens through which both the caregiver and care receiver view the many tasks and responsibilities associated with MS. Deviation from role expectation is a point of awareness for many caregivers and care receivers alike. Interview Coding Throughout this chapter, participants' own words are used to illustrate their perceptions and experience. Pseudonyms and numbering are utilized to help readers 64 identify participants' roles and relationships. All female patients are given a pseudonym and numbering code (FP#). Similarly, male caregivers are coded (MC#), male patients (MP#) and finally female caregivers (FC#). Numbers equally correspond so that male patient 1(BOB MP1) and female caregiver 1 (MARY FC1) are connected-related as a dyad. Overview Unpaid-nonprofessional caregivers of MS patients are responsible for a wide variety of care activities and responsibilities. The care situation can both positively or negatively affect the outcome for the patient. That care relationship is the focus of this study. Considerable amounts of care provided to people with MS are informal in nature, and most patients want to receive care in a familiar environment. There are numerous benefits to both society and the MS patient in utilizing unpaid-nonprofessional care. Specifically, unpaid-nonprofessional care is care provided by loved ones, usually family members. Health care providers recognize the psychological and social advantages of utilizing informal care (Carton et al., 2000). The care provider can be burdened with the many needs of the MS patient. Focusing on the caregiver and care receiver in this experience is the center of this research. The research study was informed by a social model of disability perspective and a feminist care theory, specifically, the ethics of care. The study further encompassed gender and other factors, with reliance on Pearlin's Stress Process Model. Further, care and dependency were considered. While conducting the research interviews, two additional theories emerged and are relevant to this work. Participants spoke of their 65 experience in terms of loss and appeared to be grieving the loss of ability. Therefore, Kübler-Ross's stages of loss and Zusne and Jones' concept of magical thinking are discussed in connection with the MS care experience. The research explores how gender differences contribute to the care experience and are critical to understanding the MS care phenomenon. Finally, the research explores care from both a care receiver and care provider perspective. To explore these phenomena, 29 interviews were conducted with patients and caregivers alike. Twenty individuals were interviewed individually, five males with MS and their spouses and five females with MS and their spouses. Nine of the ten couples completed a joint follow up interview. Interviews were conducted at Neurology Specialist, the Neuroscience Research Center or in the participant's home depending on the participant's desire and availability. Participants were made aware of the study by flyers at the clinic and agreed to participate in the interview process. Participants were all from the greater Dayton, Ohio region and had various levels of illness severity. Interviews were taped, transcribed and analyzed using NVivo software. Demographic Information As this is a relatively small study, demographics are being reported as a means to understand this particular research population. Inference about causality and connection are not being made; rather, demographics are merely being reported. Understandably, demographics would change with different participants. Demographics contribute to Pearlin's discussion of the background and context affecting the overall care situation. Some are primary stressors and adversely affect outcome for participants. Therefore, 66 demographics are being reported for: age, race, and household composition, age of onset, education level, household economic status, and employment status. Certain situations such as joblessness may affect the entire environment for participants and may also help or hinder life function. For this group, caregivers ranged in age from 32 to 58 years with the average age being 48.7 years. Patients ranged in age from 41 to 59 years with the average age being 48.9 years. All participants were Caucasian. Three of the couples lived by themselves. Two couples lived with one child, four couples lived with two children and one couple lived with four children. MS was diagnosed for the participants as early as age 19 and as late as age 46 with the average age of diagnosis being age 33. Education level varied for caregivers and patients (see Figure 3). Gender did alter the education level specifics. Figure 4 further breaks down the education level of patients and caregivers by gender (see Figure 4). Figure 3: Caregiver versus patient education level Education Level012345Some High SchoolHigh SchoolSome CollegeTwo year degreeFour year degreeGraduate School# of ParticipantsCaregiver EducationPatient Education67 Figure 4: Gender caregiver versus patient education level Male patients in this study were the highest educated and male caregivers were the least educated. The median education range for male patients was reported as a two or four year college degree and the male caregivers reported their education as a high school education. Female caregivers and female patients reported the same education level, i.e., a 2 year degree, Household economic status ranged from less than $20,000 to over $100,000 with the median household income range reported as $36,000-$50,000. Two patient participants declined reporting household income. Nine of the 10 couples fell into this income range. Four of the female patients were unemployed, and one worked outside of the home. Three of the male patients were unemployed and two worked outside of the Participants' Gender and Educational Attainment01234Some High SchoolHigh SchoolSome CollegeTwo year degreeFour year degreeGraduate School# of ParticipantsMale PatientMale CaregiverFemale PatientFemale Caregiver68 home. All five of the female caregivers worked outside of the home. Two of the male caregivers worked outside of the home and three were unemployed. Financial concerns and joblessness cause additional distress for families with MS. Lack of financial resources can adversely affect the experience and decrease options for families. Identified Themes Permeating and consistent themes emerged in both the reflective journal writing process and during NVivo analysis. These were coded into 25 content areas by the researcher. Eight of those were sub coded into additional specific substance areas. Physical symptoms and care activities were the most frequently discussed content areas during the interviews with 21 sources (actual interviews) identified for each. Physical symptoms were discussed a total of 53 times within those interviews and care activities were discussed 57 times in the 29 interviews. Other topics of frequent discussion include: gender roles (26 times), emotions (24times), life stressors (18 times) and loss (14 times) The following table, Table 1, shows the categories and subcategories, including the number of sources and references that were developed during analysis. Participant Portraits I will present 4 couple portraits to give an understanding and feel for the participants in this study. 69 Table 1: Identified Themes Category subcategory Sources/Interviews Referenced Care activities 21 57 amount of care 12 15 care needs 17 32 caregiver care for patient 12 24 patient caring for caregiver 9 14 patient self-care 6 6 caregiver self-care 5 5 Physical Symptoms 21 53 Gender roles 14 26 Emotions 12 24 acceptance 5 7 anger 3 3 anxiety 4 5 blame 2 2 depression 3 5 guilt 1 1 hate 1 1 relief 1 1 sadness 1 1 stubbornness 5 8 uncertainty 7 14 Life stressors 13 18 Loss 8 14 Severity 1-10 scale 13 13 Other guy has it worse 9 10 Support systems 2 4 caregiver support 4 4 family support 15 24 friends 6 7 professional assistance 5 5 support groups 11 14 70 Julie and Mike have four children living in the home. Julie works as an administrative assistant and Mike is a high school teacher. Mike has MS. He has good days and bad days. Mike has the support of his working environment and his Principal makes arrangements so Mike does not have to walk around the building as much as other teachers. Mike loves to attend his children's sporting events, but this is getting increasingly difficult and he is contemplating an electric wheelchair. He fondly remembers playing catch and throwing his kids in the water but he realizes his illness has taken its physical toll. Julie has strong faith and conviction. She believes the husband is the head of the home so she quietly assumes responsibility and gently offers support to Mike without him asking. Julie feels it is important for Mike to be in charge of the family even if he physically cannot manage the home. Both rely on their faith and praise God that his illness is not as bad as others. Jen has MS. Her husband John attends all medical appointments with Jen because she no longer drives. Jen has an electronic wheelchair and John says she is not good at driving that thing either. Jen requires assistance transferring from chair to toilet. John works at a factory full time and makes sure that Jen has everything she needs before going to work. She has an elderly neighbor to call in an emergency. Jen prefers not to get help from anyone other than John. John reports that others do not know Jen's ways. Jen wonders if John likes her being dependent. John says he does not need another woman in his life because he can do everything now. Jen also talks about her illness and is thankful she does not have MS as bad as others. Sarah has MS. Sarah and Zack are struggling financially. Zack is looking for work. Sarah talks about the MS "smack down" and wonders if at times she is going 71 crazy. Sarah relies on her parents for help and Zach assists only if Sarah asks. Sarah worries because not only has MS has affected the intimacy in her marriage, but she is also unable to do the tasks she used to do. Sarah is stubborn and one spring she crawled from flower bed to flower bed to get her flowers planted. She says Zack watched but he would not help because she did not want his help. She planted her own flowers that spring. Not only does Nate have MS, but Nate and Jessica suffer the loss of a teenage son. Nate was active in scouts with his son and his house if filled with scouting memories. Their son never made it to Eagle Scout. Nate is unable to teach anymore. He is on disability and at each and every appointment he asks his doctor if he can return to work. His doctor tells him no. Money is tight for this Nate and Jessica, who are trying to raise teenage daughters. Jessica went to school and now works as a nurse's aid. She figures she is good at this job because she got used to taking care of Nate. Nate says she might as well get paid for taking care of people because she takes care of Nate for free. Nate has his Bible sitting next to his chair and the baseball game on the television screen. Nate proudly shares his son's scouting scrapbook. MS is just one of the numerous difficulties he faces. Care Activities The most frequently sourced and referenced category in this study was care activities. Participants were able to talk about care in terms of hands on activities completed for the person with MS. Care was discussed either as specific care activities or in broad general terms. Reports of particular care activities varied slightly among 72 participants in the study but had similarity among all participants. Female caregivers reported they provided help with delivering medication, medication management, mobility assistance, activities of daily living (dressing and transferring), cooking, managing finances, memory assistance, financial assistance, attending medical appointments, and providing watchful supervision to the patient. JULIE FC3 stated, "It's just more of assisting him along and having the watchful eye out a lot." One male patient, MIKE MP3, described the watchful eye as part of his care receiving experience as well: I'll be a little tired, well; she'll grab my arm and say she wants me to hold onto her. But really I know what she's doing, she's guiding me, making sure that I don't stagger or f