AN EXPLORATORY STUDY OF PSYCHOSOCIAL FACTORS AFFECTING QUALITY OF LIFE FOR CANCER SURVIVORS AND FAMILY CAREGIVERS

AN EXPLORATORY STUDY OF PSYCHOSOCIAL FACTORS AFFECTING QUALITY OF LIFE FOR CANCER SURVIVORS AND FAMILY CAREGIVERS

Thesis Proposal

By

Abdul Rahman Seuti Magba-Kamara

College of Arts, Humanities and Social Sciences North Dakota State University

Major Department.

Sociology, Anthropology, and Emergency Management

(May 2008)

Fargo, North Dakota

INTRODUCTION

Cancer is the second leading cause of death in the United States, second only to cardiovascular and pulmonary diseases (Anderson, 2001). There are more than 10.5 million Americans today who are cancer survivors, “more than one in three Americans are at a risk of getting cancer, or know someone who has survived cancer” (IOM, 2006, p.1). According to the American Cancer Society (ACS, 2002a) an estimated $56.4 billion is spent from the American health care resources each year in direct medical costs caring for cancer patients in addition to an estimated $100.3 billion associated with lost productivity due to illness or premature cancer deaths.

Although the mortality rates for both men and women across the major cancer sites (lung, breast, prostrate, colorectal, and cervical) has been reduced due to improvement in early detection and treatment, there are certain members of America’s cancer survivorship population and their family caregivers, who suffer a disproportionate burden from the disease. The poor access to health care because of lack of health insurance, or the lack of adequate health insurance, financial issues, a fragmented medical system, absence of any psychosocial oncology, and the lack of social support, all contribute to create a burden that impedes on the quality of life for them and their family caregivers.

To address the psychosocial needs of cancer survivors and family caregivers, it is paramount to establish a meaningful understanding of factors that affects their quality of life. This study will employ a qualitative methodology to explore the perceptions held by cancer survivors and their family caregivers following diagnoses, treatment and post-treatment. It will use focus groups and one-on-one interviews to present cancer survivors and care givers perspectives on the psychosocial impediment to a better quality of life.

Literature Review

A study on cancer survivorship by the Institute of Medicine and National Research Council (IOM 2006) revealed rather gruesome statistics on the number of Americans who are considered cancer survivors. There are more than 10.5 million Americans today who are cancer survivors. What is the quality of life of these individuals who have faced a fatal disease, survived it, but still live under the cloud of its possible reappearance? The IOM cancer survivorship study which was supported by the National Cancer Institute (NCI), the Centers for Disease Control and Prevention (CDC), and the American Cancer Institute (ACI), has suggested that for cancer survivors “the transition from active treatment to post-treatment care is critical to long-term health. If care is not planned and coordinated, cancer survivors are left without knowledge of their heightened risks and a follow-up plan of action” (IOM 2006, p.1).

Cancer survivors and family caregivers are experiencing many life challenges in their transition from active treatment to post-treatment care that impedes on their Quality of Life (QOL). A population based study of the quality of life cancer survivors and family caregivers (Mellon, Northouse and Weiss, 2006) have suggested “Although there has been attention to the psychosocial adjustment of cancer survivors and family caregivers after the initial diagnosis and throughout the cancer trajectory, there has been little research directed to the quality of life of cancer survivors and their family caregivers who are living with the illness during an extended time frame after treatment has ended” (Mellon, North, & Weiss, 2006, p.3).

Most of the research conducted on cancer survivors and family caregivers has focused on larger population based samples in an attempt to understand the needs of family members of survivors after the initial diagnosis; after recurrence, or during the long-term survivor phase. Only a few studies have directed their attention to the quality of life of cancer survivors and family caregivers during the long-term survivor phase of the disease. The focus of this study is to identify common needs from the perspectives of individual survivors and family care givers from their survivorship experiences.

Medical Survivorship Issues

The Institute of Medicine and National Research Council (IOM, 2006) study indicates more than 10.5 million Americans are living with a history of cancer. Mortality rates across all 4 major cancer sites for both men and women have declined. This dramatic increase in the numbers and lengths of survival for individuals with cancer has been studied and documented in two studies (Parker et al., 1997; Rowland et al., 2004) as the result of improved early detection and treatment

Over the past several years, epidemiological researchers studying cancer survivors have focused most of their attention on breast cancer survivors and primary care for cancer survivors of breast cancer. Burnstein and Winer (2000) focused their cancer investigations on primary care for survivors of breast cancer. Examination of the side effects of adjuvant treatment (Shapiro and Reicht, 2001) has been their primary research interest. Some other epidemiological researchers (Partridge, Burstein, and Winner, 2001) have focused their investigations on the side effects of chemotherapy and combined chemo hormonal therapy in women with early stages of breast cancer.

Epidemiologists (Emens and Davidson, 2003; Hurria and Hudis, 2003), focused their attention on follow-up care of breast cancer survivors, while Mrozek and Shapiro’s (2005) study focused on survivorship and complications of treatment in breast cancer. The primary focus of these investigations was only on female breast cancer survivors, no mention was made on family caregivers. The results of their findings indicate that the meaning of health and life itself for cancer survivors following their diagnosis of cancer can be altered.

Herold and Roetzhein (1992) studied Cancer survivors, while Muzzine, Anderson, Figuerredo, and Gudelis’s. (1994) studied ‘the experience of cancer’. Results from these cancer survivor studies also suggest an on going experience for cancer survivors to achieve a balance in their lives after diagnosis of their cancer. The struggle for survivors to achieve a balance extends through treatment and post-treatment.

The psychosocial problems of cancer survivors have been investigated by Smith and Lesko (1988), while Quigley (1989) observed the psychosocial consequences of cure in adult cancer survivors. The results from these studies suggested an array of psychosocial problems for cancer survivors such as fear of occurrence of their cancer, the fear of death, worries, and the pervasive uncertainty that is associated with cancer, as their particular concerns.

Gunz’s (2000) ‘Quality of Life across the continuum’ study of breast cancer care indicates dynamic constant changes in their survivorship overtime. Gunz observed such psychological factors as stress and notes, that breast cancer survivors’ moment of stress is transitional from treatment to long-term follow up across the continuum of cancer cure.

The Institute of Medicine and National Research Council (IOM 2006) view the study of cancer diagnosis to its post-treatment phase as a disease phenomenon, which has been lost in transition. The IOM study highlighted some of the lasting psychological and psychosocial impact of cancer and its lasting affects not only on the individual with the disease but on the entire family. It indicated the debilitating and stressful impact cancer has on the entire family. The study called the public’s attention to the psychological and social needs of the children, spouses, partners, and other loved ones of the cancer survivor as part of survivorship.

Needs of Survivors and Caregivers

As Ferrell et al., (2002), suggested in a study on family perspectives of ovarian cancer, and Given et al., (2001) found in a study of family support in advanced cancer, family caregivers and family members should be seen as essential participants in the health care and maintenance of cancer patients. Their role in the treatment and post-treatment phase in the cancer trajectory is important in the cancer survivorship nexus because they are filling the void left by care professionals. Cancer survivors have a unique and varied mix of emotional, physical, and spiritual needs. Significant number of survivors in poor physical health will need ongoing cancer post-treatment homecare.

The absence of a nationwide comprehensive system of referral and services for cancer survivors makes it difficult to identify their psychosocial needs and match them with the appropriate resources and services to enhance their quality of life. It is difficult for cancer survivors and family caregivers with educational and socioeconomic limitations, and inadequate life-management skills, to navigate the current health service network with its complex structure and methods of financing health and medical care. The complexity of the present health and medical care system has a profound effect on the quality of life for cancer survivors and family caregivers.

Amid their various struggles and attempts to navigate the complexity of the medical system, both survivors, and family caregivers, each have their own interpretations of what is happening in their lives. How does a family caregiver reconcile the cancer survivors’ needs, making sure he or she organize meals, make sure the cancer survivor’s vocational and recreational needs are met, with thoughts of he or she earning money to pay the bills for maintaining the household, without compromising both of their quality of life?

More research in psychosocial oncology on how educational and socioeconomic limitations and inadequate life-management skills influence the short-and long-term needs of cancer survivors and family caregivers is needed. As noted in Shifflet et al. study (2002) published literature in this field is largely based on small groups of patients who are treated in “elite university affiliated cancer centers where researchers have the resources, motivation, and expertise to conduct such research” (Shifflet et al, 2002, p.190).

Financial Issues

American Cancer Society (ACS, 2003) study indicates that cancer is the second most expensive disease in the United States, next to heart disease, with estimated annual costs of $171 billion. It also indicates that only about one third of these costs are paid by Medicare or private health insurance programs. The remaining two thirds are paid by non-reimbursed or “out-of-pocket” costs. Direct nonmedical expenses that are related to cancer treatments such as transportation, and children falls under non-reimbursed costs that are out- of- pocket costs.

National Health Institute (NIH, 2000) study of disease specific estimates suggested that income loss due to cancer-related morbidity and treatment represents opportunity cots. Hayman, Langa, Kabeto, et al., (2001) studied the cost of informal caregiving for elderly patients with cancer. They suggested that as a result of non-reimbursed cancer cots cancer patients and family caregivers often endure financial hardship. A study on the impact of serious illness on patients’ families (Covinsky, Goldman, Cook et al., 1994) found that one third of families lost most or all of their savings following a cancer diagnosis. Their study also found that a family member quit work or made another lifestyle change to provide care in the remaining in the one fifth of the families they studied.

Limited financial resources and poor family support place many cancer survivors at risk for financial hardship. This is more so for women cancer survivors who are household heads. Even if they have comprehensive health insurance policies, the financial impact can be large. The paradox of the medical insurance system is insurance, was designed to reduce illness eventualities, it is the primary reason why many people buy cancer insurance policy. The belief is that cancer insurance policies were designed to reduce the holders’ financial burden in the event cancer, but as Arozullah, Calhoun, Wolf, et al (2001) financial burden of cancer for women with breast cancer study indicated the majority of out-of-pocket costs were for co-payments for hospitalizations and physicians visits.

A study on the Quality of life of husbands of women with breast cancer (Wagner, Bigatti and Storniolo, 2006:109) cited a study on the supportive care needs of spouses of women with breast cancer by Petrie et al (2001) which suggested that the:

Life threatening nature of breast cancer, along with the side effects of treatment, place great strain on patients and their families. Husbands may be especially vulnerable as the main source of support to patients….Throughout this journey, the adverse effects of cancer and its treatment extend beyond the patient to negatively impact the quality of life (QOL) of the family, especially the husbands, who often act as informal caregivers and are most frequent providers to married women with breast cancer.

The effects of cancer are not relegated only to the individual with the disease; it has as the IMO (2006:67) study suggested:

an impact on the entire family, and the needs of children, spouses, partners, and other loved ones all need to be considered…Financial concerns may also arise because family income, insurance status, and employment can all be profoundly affected by cancer. Caregivers and family members often require, but do not receive

the respite, health care, psychosocial, and financial assistance they need in meeting the many needs of cancer survivors in their lives.

Because most personnel decisions are based on economic factors “employers may be motivated to fire an employee with cancer or a history of cancer because of concerns about increased operation costs due to insurance expenses and lost productivity or because of concerns about the psychological impact of a survivor’s cancer history on other employees” (IOM, 2006, p.382).

Inadequate Insurance Coverage

Many cancer survivors, their family caregivers and families, are at risk of loosing both their employment and insurance during their extensive and prolong cancer treatment. Young adult cancer survivors and family caregivers in the lower income brackets who are particularly in dire straits are the most vulnerable segments of our population. These groups of cancer survivors do not have adequate coverage for psychosocial care and follow-up care, since they have inadequate insurance even under the most comprehensive health plans or Medicare.

The National Cancer Institute (NCI, 2005) surveyed working-age cancer survivors’ between the ages of 20 to 64 about their employment opportunities after their cancer post-treatment. The NCI survey results suggested that those with health and medical insurance coverage may have problems maintaining their coverage following a diagnosis with cancer. NCI survey revealed that there are an estimated 3.8 million working age adult Americans with a history of cancer as of 2002. Although most Americans have some form of health insurance that provides coverage for most cancer related care, however, there are over 42 million Americans with no form of health or medical insurance. IOM study suggested that “for those Americans who are without any health or medical insurance there are serious negative consequences and economic costs for both the uninsured and their families, and the communities they live in and the nation as a whole” (IOM, 2006, p.390).

Many cancer survivors, who have attained the age of 60 years or older, who are still able to work, and want, to be gainfully employed are experiencing job loss and some times are deprived of their right to be gainfully employed. Some who are fortunate enough to be working are forced into early retirement due to cancer. The loss of a gainful employment results in a loss of health benefits, but they are not eligible for Medicare due to what the Department of Health and Human Services (DHHS 2005) termed age eligibility criterion. For many of these vulnerable and marginalized groups of cancer survivors, out-of- pocket health care cost creates a significant challenge and economic burden for them and their families. This economic burden from out-of-pocket health cost is especially felt by those survivors on a fixed income.

Cancer survivors, who are living alone, or are living far from members of their family lacks adequate social support network, the absence of such a social support network impedes on their quality of life. Another barrier preventing women with breast cancer from getting appropriate psychosocial intervention and care is the lack or inadequacy of health insurance coverage. Findings from the HOM (2004) study on the psychosocial needs of women have suggested “an estimated 8 percent of women with breast cancer are uninsured, or, if insured, there is coverage of mental health services with lower reimbursement levels or placement of mental health services in behavioral health contracts, separate from health coverage” (HOM, 2004, p.5).

Fragmented Medical System

A Report by the President’s Cancer Panel (PCP, November 4, 2003) indicated that the absence of a national electronic health record system is one of the major impediments to medical continuity and the quality of care for most cancer survivors. It also mentioned the lack of a national policy that could protect cancer survivors and their families employ -ment, insurance and assets. Another impediment to the quality of life for cancer survivors and their family caregiver was mentioned in the IMO (2006:192) study on cancer survivor -ship, “while in treatment, cancer patients often see multiple specialists-surgeons, medical oncologists, and radiation oncologists-in addition to their primary care provider.”

The fragmented medical system not only makes the coordination of medical care difficult but it also adds great stress and difficulty in addressing psychosocial needs. The IOM study (2004) mentioned earlier noted:

The dramatic shift in the delivery of almost all cancer care from inpatient hospital to out patient settings has not included a similar shift in the out patient psychosocial services to the outpatient clinics and private oncology office practices…the increased complexity of care has limited access even further. Women with breast cancer usually see multiple specialists (e.g., surgeons, radiation oncologists, medical oncologists), and care is often not well coordinated (HOM, 2004, p.5).

Because women with breast cancer are experiencing a fragmentation of care, and are not given care by a single, trusted physician, this creates an added psychological burden for them. The IOM study also mentioned that in addition to the fragmented care women with breast cancer are experiencing “the outpatient office and clinics are extremely busy; the length of time doctors can spend with patients is often limited, and the opportunity to bring up psychosocial problems may be lost” (HOM, 2004, p.5).

Psychosocial and Social Support Needs

Another impediment to the quality of life for many cancer survivors, family caregivers, and family members is the absence of much needed psychosocial assistance and support during treatment and post-treatment. With the advances of medical research and the increase in the survival rate one will assume that the patient’s trouble will disappear. But as Roberts (1984: 92) discovered in his study on cancer today “it has become clear that the patients’ troubles don’t disappear along with the physical symptoms. The disease and the treatment may leave emotional scars that hamper the individual’s efforts to resume an active life”

Despite the “encouraging advances in finding a medical cure for this dreadful and debilitating disease coupled with the discovery of new techniques for early detection and diagnoses and the availability of new therapies for treating some of the highly recalcitrant forms of cancer therapies” (Roberts, 1984p.1). She suggested a new direction to deal with some of the challenges of survivorship. Roberts mentioned in her psychological and social effects study on cancer survivors that “as the survival rate has increased, it has become clear that patients’ troubles do not disappear along with the physical symptoms” (Robert, 1984, p.92)

Some epidemiologists (Demark-Wahnefried et al., 2000; Blanchard et al., 2003a; Ganz, 2005), have devoted a great amount of attention in the literature in their investigation of cancer survivorship. Most of their focus has been devoted to life style behavior, such as smoking, and unhealthy diet, less or none of their attention was focused on examining the psychosocial factors that are associated with cancer or the reoccurrence of cancer. Earlier studies on cancer survivorship published in the cancer survivorship literature by Evans (1926) had suggested a linkage between psychosocial and other personality factors to some certain forms of cancer. Evans views psychosocial factors such as the loss of a love object or an important emotional relationship as one of the leading causes of cancer.

Since Evan’s (1926) study linking psychological factors to cancer was published in the literature over half a century ago, the epidemiological literature has been saturated with studies associating stress to the disease. For instance, Selye‘s (1979) study attributed stress and cancer by suggesting that stress plays a primary role in development and reoccurrence of cancer in the cancer patients he was observing. In his study on the psychological factors and cancer on men with lung cancer, Kissen’s (1967) study went further when he suggested psychological factors like life events such as the loss of love object, despair, depression and hopelessness can lead to cancer.

Ferrell’s (2004) study of Quality of Life Issues for cancer patients, suggested that cancer survivors report ongoing struggles to achieve a balance in their lives and a sense of wholeness and life purpose after a life-altering experience. Bacon et al., (2002) scholarship on prostate carcinoma investigated men with prostrate cancer and suggested that men who are prostrate cancer survivors are more concerned about recurrence and the effects of post-treatment symptoms on their quality of life and this may contribute to their psychosocial distress.

For example, Hewitt, Bemundo, Day and Harvey’s (2007:2270-2273) have provided us with some perspectives on post treatment cancer care for cancer survivors. They noted, “Insights into post-treatment follow-up practices and the acceptability and feasibility of providing survivors and referring physicians with cancer survivorship care plan reveal cancer survivors were satisfied with post-treatment follow-up practices but were not satisfied with their psychosocial needs because they were not met”.

Finally, the lack of adequate social support is also felt by some survivors who are cared for by their elderly family members who may themselves have illness, limited mobility, or short-term memory problems. Social support can take many forms ranging from emotional to practical. For example, one support issue for many survivors is the lack of transportation, especially for those who are no longer able to drive. Increased attention should be focused on the psychosocial needs of cancer survivors and family caregivers, not just on cancer survivors. More attention should also be directed to family members and care givers in distress. The psychosocial intervention should also be focused on ways to support family members, and family caregivers, that will help them reduce the stress they are experiencing in taking care of a family member 24 hrs a day 7 days a week.

The Cancer Survivorship Phase

When cancer survivors and doctors describe cancer survivorship phase, they are usually referring to the living with cancer stage, the living through cancer stage, and living beyond cancer stage (Anderson, 2008), three stages which make-up the cancer trajectory phase. Living with cancer stage, refers to the experience of receiving a cancer diagnosis and any treatment that may follow. During this initial stage of the disease, the patient will undergo treatment and may be asked to join a clinical trial to study new cancer therapies. During the living with cancer stage, the cancer patients and their caregivers are sometimes offered services to help them cope with emotional, psychological and financial concerns.

Living through cancer stage is the period following the patient’s treatment in which the risk of cancer is relatively high. It is also during the living through cancer stage when many cancer patients are relieved that their cancer treatments are over. During this stage patients are anxious and at the same time relieved because they will no longer be seeing their cancer doctors on a regular basis. Depending on the patients circumstances visits to their cancer doctors will now be reduced from regular weekly visits to two to four times a year.

Living beyond cancer stage is the post-treatment and long-term survivorship stage. During this post-treatment stage, most survivors will go back to the care of their primary physicians. It is during living beyond cancer stage that two out of three cancer survivors report that their lives are returning to normal. It is also during the living beyond cancer stage that 1 out of 3 survivors will complain about continuing physical, psychosocial or financial consequences of the disease (Andersen, 2008).

Research on the medical and psychological effects of cancer and its treatment on cancer survivors (Herold and Roetzheim, 1992) and cancer survivors (Muzzin et al., 1994) have been recognized for many years but it is only very recently that cancer survivorship is coming to be recognized as a distinct phase in the cancer trajectory. Fobair et al., (1986) studied the psychosocial problems among survivors of Hodgkin’s disease, whilst Long et al., (2000) investigated fatigue and psychiatric morbidity among Hodgkin’s survivors. The findings from both studies suggested that survivors of Hodgkin’s disease often report post-treatment fatigue that can affect their work and leisure activities.

Mullen (1985) articulated the concept of cancer survivorship in an article in the New England Journal of Medicine in which he described his personal experience as a cancer survivor. In his description of the cancer survivorship phase, Mullen referred to them as the “three seasons of concerns”, each according to Mullen, has its unique sets of concerns. Mullen called the first cancer survivorship phase “the first season” or “Acute survival” phase, a period marked by fear and anxiety.

The Acute survival phase begins with the diagnosis of the illness, and is dominated by diagnostic and therapeutic efforts. Extended survival phase, is the next stage in Mullen’s three seasons of concerns, it is a period during which a cancer patient goes into remission or has terminated the rigors of the treatment or has entered a phase of watchful waiting. It is also a period of examination and consolidation or intermittent therapy. Extended survival phase is also, a phase during which the cancer patient is psychologically dominated by a period of fear that the disease might reoccurred. Extended survival is a phase marked by physical limitations because the tumor and treatment would have exacted a corporal price on the cancer patient.

The physical toll experienced by the cancer patient from the tumor treatment are diminished strength, fatigue, a reduced capacity for exercise, amputation of a body part, or hair loss. Because of the financial cost it will take to keep the patient in the hospital for an extended stay, a cost which many health insurers don’t want to incur, an the shortages of medical oncologists, cancer clinicians, the cancer patient will now be sent home to be cared for by the family caregiver. The permanent survival phase is Mullen’s third survival phase, is marked with problems of employment and insurance. This study will highlight some of the lasting psychological and psychosocial impact of cancer survivors, their family, loved ones, physicians, and care givers.

Issues for the present study

The aim of this exploratory study is to examine the range of psychosocial issues experienced by cancer survivors and their family caregivers from diagnoses, treatment to post-treatment from both the survivors and family caregiver’s perspectives. Previous quantitative studies have shown the residual effects of having cancer on survivors, such as fatigue, pain, low energy levels and sleep disturbance long after treatment ends (Kornblith et al., 2003; Brocket et al., 2002; Wenzel et al., 2002).These quantitative studies offered insights into the symptomatic complaints of long-term survivors, but they did not pay attention to the overall cancer perspectives of the cancer survivors and family caregivers. These studies ignored the experiences of the cancer survivors, and their family caregivers.’ The present exploratory study attempts a gestalt interpretation of how cancer survivors and family caregivers define their existence after living through diagnosis, treatment, and beyond treatment. The focus is on their social psychology, and their day-to-day experiences with the disease. This approach is to help us to understand the fundamental psychosocial factors that are impeding on their long-term quality of life.

The present study also aims to fill some of the gaps in the qualitative literature on long-term survivorship by giving opportunity to a diverse group of cancer survivors and caregivers (with different types of cancer) to talk about their survivorship experiences in focus group discussions, and in-depth interviews. It will present survivors own interpretations of their cancer survivorship experience from their own perspectives, and how those interpretations of their experiences affect their quality of life. This qualitative approach will help us obtain a richer understanding of the cancer survivorship experience.

This study of the psychosocial needs impeding on the quality of life of cancer survivors and family caregivers utilizes a naturalistic approach to provide new insights, meanings and descriptions as it seeks to understand, interpret and explain the experiences of survivors from cancer diagnosis through treatment and post treatment from the pers -pectives of cancer survivors and family caregivers themselves. This study hopes to identify issues specific to the life stage at which cancer was diagnosed and also to identify issues that may differ across different diagnoses. Following the tradition of qualitative researchers (Glaser & Straus 1967; Straus and Corbin, 1990), this study utilizes a grounded theory approach as its methodological format to explore cancer survivorship from the psychosocial experiences of survivors themselves.

RESEARCH QUESTIONS

The following research questions will guide this study and help it yield important

insights into the many complex social process underlying some of the psychosocial factors

impeding the quality of life for cancer survivors and family caregivers.

* How do survivors and family caregivers adjust to the trajectory of the disease? And what is the role of family caregivers in cancer care?

* How do survivors perceive their disease?

* What are the factors related to caregiver burden and depression?

* How do family caregivers relate to the challenges in taking on the caregiver role?

METHOD

The present study is a qualitative study aimed at exploring the psychosocial experiences of cancer survivors from diagnoses, treatment and post treatment. Following the tradition of qualitative researches Glaser and Straus (1967), Straus and Corbin (1990), it utilizes the grounded theory approach as a methodology for exploring the psychosocial experiences of cancer survivors from diagnoses, treatment and post treatment. This methodological approach is aimed at identifying issues that may differ across different diagnoses, from diagnoses to treatment and post treatment, and from the survivorship experience of the cancer survivors to their families, nurses, physicians and care takers.

As a methodological approach, the utilization of a grounded theory format will enable this study to collect situational information from participants under observation (cancer survivors, loved ones, care givers, nurses, and physicians). The utilization of grounded theory as an element of the investigation will help in introducing discovery of the investigation by soliciting emic view points of the psychosocial experiences directly from the cancer survivors themselves (subjects of interest) this will assist in determining the meanings and purposes that they ascribe to their health conditions. This aim can be accomplished through the utilization of this qualitative technique.

This study will utilize focus group discussions and in-depth interviews as part of the qualitative research method as was adopted by qualitative researchers (Merton, Fisk & Kendall, 1956; Busch 1987; Murray, Tapson, Turbull, McCallum & Little, 1994; Kitzinger, 1995) to gain an understanding of what is important to cancer survivors and family care givers. The utilization of focus group discussions and interviews (structured and semi-structured) with cancer survivors and family caregivers will help provide insights and understanding of the post-treatment follow-up and practice of cancer survivors.

As a form of group interview, the sole purpose for utilizing focus groups as a method of investigation is to generate a rich source of data that will help explain the day- -to- day experiences of cancer survivors, their families, relatives and care givers. Focus group discussion and interviews as part of the method in this study is used to encourage research participants to generate and explore their own questions and develop their own analysis of common experiences. As a form of a group interview, the use of focus group discussion as part of a method will enable this study to capitalize on a formal and semi formal communication between study participants in order to generate rich data. The use of focus groups means that instead of asking each person to respond to a question in turn, study participants are encouraged to talk to one another, asking questions, commenting on the experiences and points of views of each other that otherwise, might be left under -developed in a one on-one interview. Thus, the utilization of focus group discussion will encourage study participants to illuminate their perspectives through the debates within the group.

Finally, the utilization of focus group discussion as part of the methodological approach will enable this study to examine not only what survivors think but how they think and why they think that way. The discussions from the focus group and the interviews will be transcribed, thoroughly read and reread for content analysis.

Sample/description and setting of participants

Purposive sampling will be used to identify and recruit study participants who meet the definition of survivorship as defined by the National Coalition for Cancer Survivorship (NCCS) and National Cancer Institute (NCI) Potential participants for this study will be recruited through flyers and brochures distributed to recruitment sites associated with the National Cancer Registry. Within reason and financial restraints, I hope to visit two or more locations for on-site focus groups. In addition, I hope to gain the cooperation of the Cancer Survivors Network which is network that supplies information, resources, chat rooms and discussion opportunities over the internet for cancer survivors. Hopefully I can make arrangements to contact members directly via mail or phone. Letters will be sent to select oncology practices in the Fargo Moorhead areas. Announcements will also be sent to local survivors’ support and advocacy groups.

Prospective participants who are interested in participating in the study will be contacted via telephone and email to set up an informal interview. As the study progresses, theoretical sampling procedures will allow this study to develop an in-depth description that will help us to understand the psychosocial needs that are crucial to the quality of life for survivors and family caregivers by continually making theoretical based comparisons using the emerging data (Straus & Corbin. 1998). The data collection will conclude when theoretical saturation is reached. Eventually 20 male survivors and 20 female survivors and family caregivers who are cancer survivors will be invited to participate in focus group discussions and in-depth face-to-face interviews. A series of semi-structured interviews will be conducted; each interview will last duration of about 45 minutes.

DATA ANALYSIS

The data analysis in this study will involve multiple step process, starting with a thorough examination of the phrases, sentences and paragraphs of the transcribed texts extracted from the focus group discussions and the interviews. Following in the tradition of Denzin and Lincoln ( 1998), Straus (1987), Znanieck (1934), Lofland and Lyn (1995), Spradley (1980), and Katz (1983). I will thoroughly examine the text materials from notes taken during the focus group interviews and one-on-one discussions, field notes from observational visits and discussions in hospitals with oncologists, and will be assigned shorter phrases and coded.

The next step for me is to look for indicators of categories in the phenomena under observation, name them and code them on a separate document. My third step will be to compare codes to find consistencies and differences. My fourth step in analyzing the data is to look for consistencies between the assigned codes and group codes with similar meanings if they relate to the similar basic idea to reveal their categories by categorizing each group of code as it relates to specifics until eventually the categories become saturated then look for their central foci to see how they each relates to one another.

Through the method of analytic induction as adopted by previous qualitative researchers this study will identify regularities from the emergent data to determine their explanations, and find other contexts in the emergent data to determine whether they hold. This process of analytic induction will help this study to search for identifiable universal prepositions and causal laws. The goal is to find the precise and specific boundaries within the categories from the textual notes and link them together to help explain particular experiences by looking for similarities and differences. I will again examine and re-examine my notes and match each code to find their contextual significance to see what themes will emerge. The process of constant comparative method is a strategy that will allow this study to constantly compare and integrate the data that have emerged to help this study get a clear understanding of what the study participants were concern about the most, and will help me to see how the themes relate to each other.

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