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Article Excerpt
I tried to talk with my counselor about the problems I was having with my lymphedema after my breast cancer surgery.... Although she knew quite a lot about breast cancer, she knew nothing about lymphedema and the stress I was under, and how ugly l feel.... I know she wanted to help, but I felt like I needed to help her ... I felt even more alone.
The American Cancer Society (2007) has reported that nearly 180,000 women in the United States develop breast cancer each year; it is currently estimated that there are more than 2.4 million breast cancer survivors. It is also reported that approximately a third to a half of these women develop lymphedema (Armer, Fu, Wainstock, Zagar, & Jacobs, 2004; Armer & Stewart, 2005; Mahamaneerat, Shyu, Stewart, & Armer, 2008; Petrek & Heelan, 1998), in which significant and persistent swelling is associated with an abnormal accumulation of protein-rich fluid, most often in the woman's ann, resulting from the removal of numerous lymph nodes in the axilla during the mastectomy and/or radiation treatment effects (Casley-Smith, 1992; Mortimer, 1998). In essence, the occurrence of lymphedema among patients with breast cancer affects millions of American women and represents a major medical and psychosocial problem (see Swirsky & Nannery, 1998).Yet, as the epigraph from the breast cancer survivors who have lymphedema depicts, counselors know little about this common affliction.
The physical impact of lymphedema can be enormous (e.g., Burt & White, 1999; Coster, Poole, & Fallowfield, 2001; Swirsky & Nannery, 1998). The swelling often causes discomfort, pain, and difficulty in using the affected limb; later, cellulitis (inflammation of the subcutaneous tissue) and lymphangitis (acute inflammation of the lymph vessels) often occur, predisposing the women to a systemic infection that can easily become life threatening. Hull (1988) also noted that lymphedema can have a broad impact on the daily lives of women, such as (a) sleeping becomes difficult as women try to elevate or position their arms; (b) carrying items, even cooking kettles or groceries, becomes challenging; (c) many forms of exercise, even walking, can become difficult; and (d) the comfort and fit of clothing can become problematic (e.g., blouses need to be larger, long sleeves are worn even in the summer to cover the swelling, or pressure from the garment). Physical symptoms and restrictions aside, what is less understood is the impact of lymphedema on women's inner lives and the level of stress they experience (Radina & Armer, 2004).
Although the psychological sequelae of breast cancer have been documented (M. B. Tobin, Lacey, Meyer, & Mortimer, 1993), the examination of psychosocial adjustment related to lymphedema is in its infancy (e.g., Passik, Newman, Brennan, & Holland, 1993). Moreover, the research in this area often results in equivocal findings (Coster et al., 2001). For example, uncontrolled case studies provided some anecdotal evidence that lymphedema is associated with psychosocial distress (Passik et al., 1993). M. B. Tobin et al. provided stronger quantitative evidence of a link between lymphedema and psychosocial adjustment, but their findings were inconsistent across measures of psychological distress. Maunsell, Brisson, and Deschenes (1993) also reported an association between lymphedema and psychosocial distress, but implemented outdated assessment instruments not typically used in the current psychological adjustment literature. Passik, Newman, Brennan, and Tunkel (1995) provided additional correlational evidence linking lymphedema and psychological adjustment and particularly highlighted social support deficits and avoidant coping as being significantly related to psychological distress in patients with lymphedema. Using improved assessment inventories, Coster et al. also found patients with lymphedema to have more psychosocial adjustment difficulties than women who have breast cancer without lymphedema.
In short, although some studies suggest patients with lymphedema experience psychosocial difficulties, this relationship is not well understood. In part, the lack of understanding may result from measurement issues (Coster et al., 2001), demographic variables, and time since the initial breast cancer interventions (Armer & Stewart, 2005), as well as the time since the initial development of lymphedema symptoms; all of these factors have been uncontrolled in previous studies. Further complicating the picture is that women may experience the symptoms of lymphedema before the swelling can be quantitatively assessed (Armer, Culbertson, Radina, & Porock, 2003; Armer & Stewart, 2005). Previous quantitative studies have provided only a part of the picture of psychosocial adjustment in patients with lymphedema but have not revealed the complexities of the impact of lymphedema on women's psychosocial lives.
After reviewing the lymphedema literature, Petrek and Heelan (1998) noted that the scanty evaluation of lymphedema may be attributed to several factors. Those factors are a history of relative neglect of women's health and, perhaps more important, the traditional view that quality of life is less important than the detection of recurrence and eradication of cancer. Unfortunately, neglect of lymphedema has not only meant that there is a lack of understanding of lymphedema but also, subsequently, that many women go undiagnosed and fail to receive basic preventive information (e.g., Coster et al., 2001; Radina, Armer, Culbertson, & Dusold, 2004). As Passik and McDonald (1998) concluded, "what recommendations to make to women are anything but clear and well studied at this time" (p. 2819). Treatment of lymphedema has been, and continues to be, a major challenge for health care professionals.
Although there has been mixed support for the utility of psychosocial factors (e.g., coping and social support) in understanding cancer onset, previous methodologically sound studies have suggested that psychosocial factors may have more utility in understanding cancer progression (Levenson & Bemis, 1991). Research over the last 2 decades has strongly indicated that psychosocial factors such as problem solving, coping, and social support play key roles in adaptive responses to a broad range of stressors (Heppner, Witty, & Dixon, 2004; Zeidner & Endler, 1996). Moreover, psychosocial factors such as problem solving and social support have been implicated in successfully fighting cancer progression (Meyer & Mark, 1995). For example, a recent study found that lower levels of psychological distress were related to problem-solving styles, namely lower levels of cognitive and behavioral avoidance and higher levels of social distancing among patients with advanced cancer (Zabalegui, 1999). However, at present, little is known about how breast cancer survivors cope with lymphedema. Unfortunately, the neglect of lymphedema and particularly how women cope with stressors associated with lymphedema have inhibited the development of theoretical frameworks to understand the ramifications of lymphedema as well as the development of empirically supported effective psychosocial interventions to prevent and manage lymphedema.
The overall purpose in conducting this study was to promote a greater understanding on the part of counselors and other helping professionals regarding: (a) the stressors associated with lymphedema, (b) how women cope with the stressors, (c) how social support might contribute to coping with lymphedema, and (d) what implications this research has for counselors who see women with lymphedema in their practices. An intensive qualitative study seemed particularly appropriate at this time to allow us to examine and probe in depth the experiences of breast cancer survivors with lymphedema. In short, our hope was that by more fully understanding the stressors facing these women as well as their coping processes, we would identify implications for developing preventive and treatment interventions that helping professionals, such as counselors, physicians, nurses, psychologists, and physical therapists, could use in responding to the pressing social need of patients with lymphedema and perhaps patients who have cancers other than breast cancer as well.
Method
A qualitative research inquiry was used because it is ideally suited to explore topics in depth and discover new relationships in largely unexamined areas (Denzin & Lincoln, 2000). We followed the consensual qualitative research (CQR) method as described by Hill, Thompson, and Williams (1997).
Participants
A purposeful sampling technique was used to recruit the participants (Denzin & Lincoln, 2000). Participants in this study were 10 women (age range = 47 to 88 years, mean age = 58.6 years) with breast cancer and lymphedema living in Missouri. The time of emergence of lymphedema postsurgery ranged from 2 weeks to 20 years, and the duration of their lymphedema varied from 6 weeks to over 40 years. The educational levels of the participants ranged from grade school to a master's degree: 1 participant had completed eighth grade, 4 participants were high school graduates or had some high school education, 1 participant had completed a baccalaureate degree, I had a specialist degree, and 3 participants had master's degrees. All of the participants were White and had children; 8 were married during the time of the interviews and lived with their spouse. The other 2 participants were divorced or separated and lived alone. Seven women identified themselves as Christian, 2 as Unitarian, and I did not report a religious affiliation. All of them had full- or part-time jobs, except for 3 retired participants. In terms of total family income, 2 reported incomes between $20,001 to $30,000, 1 between $30,001 and $40,000, 1 between $40,001 and $50,000, and 4 more than $50,000; 1 participant did not identify her income.
Data Sources
Demographic questionnaire. A brief demographic questionnaire asked participants to record their age, educational level, racial/ethnic background, current job status, relational status, number of dependents, family income, and religious preference.
Interview protocol development. A pilot interview protocol was initially developed by us. The interview focused on the participant's health condition as well as the history, symptoms, and etiology of their lymphedema. Subsequently, items related to coping, social support, and the impact of lymphedema were generated...
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