The conceptual framework, which it is proposed to structure the breast cancer follow-up service, is based on a combination of Mishel‟s Uncertainty in Illness Model (Mishel 1988), the Stress and Coping Theory by Lazarus and Folkman (1984) and Ferrell‟s Quality of Life Model (Ferrell 1996) The strands from these models have been developed to illustrate how different aspects of our lives, such as social, situational interpersonal and temporal, can influence decision making and the relationship between personality and disease and influence coping with the diagnosis of breast cancer. These themes underpin one conceptual framework to provide holistic follow-up care both medically and psychologically for this group of patients. .
Mishel (1988) describes uncertainty in illness as that which is felt by the person who is unable to understand the meaning of an event because of its complexity and dichotomy between the patient‟s own expectations. In addition, this uncertainty affects how different strategies are used in helping people to cope in different situations.
Lazarus et al. (1984) define the adjustment to normal living as the reconcilement of physical illness, morale or life satisfaction with the ability to function at work and at home.
Ferrell‟s (1996) model agreed with those of Mishel (1988) and Lazarus et al. (1984) but it included a physical, psychological, social and spiritual domain in its framework. To develop a model of care, these different domains need to be discussed in combination with the research findings and to be applied in the context of breast cancer follow-up.
(Revenson et al 2005).
2.2 PSYCHOLOGICAL IMPACT OF DIAGNOSIS AND TREATMENT 2.2.1 Experiencing distress
There is ample documentation to support the assertion that receiving a diagnosis of cancer brings with it psychological distress, an emotional burden, a threat to survival and an impairment of self image (Taylor, Ismail, Hills and Ainsworth 2004, Zabora, Brintzenhofeszoc, Curbow, Hooker and Piantadosi 2001). In this context distress has been defined as a “multifactorial, unpleasant emotional experience of a psychological, social and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment” (Jacobsen 2005). Feelings of distress range along a continuum from sadness and vulnerability to disabling depression (Vachon 2006). Several studies have found that one third of cancer patients experience distress (Zabora et al. 2001) and nurses with a professional cancer background may experience a particular form of distress, when working as a member of the multidisciplinary team. This indicates that distress is not confined to the patient. This is termed „insider vulnerability”
due to the nurse‟s extensive knowledge of the illness and her empathy with the patient‟s distress (De Marco, Piccart and Agretelis 2004).
As people live longer after a diagnosis of and treatment for cancer, attention has turned to the quality of life and the distress patients have experienced by their illness. It has been recommended in the United States that all cancer patients are routinely screened for psychosocial distress as part of routine cancer care, including follow-up (National Comprehensive Cancer Network 2003). Lovejoy, Tabor, Matteis and Lillis (2000) discuss normal sadness associated with adjusting to a cancer diagnosis. However, if the sadness persists beyond two weeks, health care professionals should suspect depression and treat it aggressively, especially if core symptoms of depression are present. These include helplessness, hopelessness, poor self esteem, feelings of guilt or worthlessness and thoughts of suicide. During treatments many depression like symptoms are related to side
effects of therapies but can be manifestations of depression and, if left untreated, have been associated with decreased cancer survivorship (Vachon 2006). Amir and Ramati (2002) found that 18% of women treated for breast cancer in their study had full Post-Traumatic-Stress-Disorder (PTSD) and 58% had partial PTSD. The study found that women who were the least ill when receiving chemotherapy were most at risk for PTSD symptoms when examined 60 months after treatment. Once treatment has been completed, interventions may involve additional education by a member of the health care team or support group. This intervention would involve awareness of vulnerability, adapting to limitations at home or work, and the difficulty of reintegrating into routine life (Fawzy 1999). It is therefore clear that cancer itself and its treatment can affect long-term health and quality of life in people who have survived the acute phase of cancer care (Lewis 2006).
2.2.2 Effects on sexuality
In addition to the psychological quality of life following breast cancer, the effects of cancer and its treatments on sexuality are not usually included in plans of care (Pelusi 2006).
Pelusi (2006) found that body image was related to perceived losses and influences. The losses included missing body parts, loss of monthly periods, loss of sexual sensation and, ultimately, loss of womanhood. The term „influences‟ is related to the quality of the patient‟s relationships before the cancer diagnosis and the amount of information and control the patient had at the beginning of the disease pathway. Lindley, Vasa, Sawyer and Winer (1998) reports that two years after treatment of breast cancer and during the follow-up period of care, women had 60% less sexual interest and sexual activity, according to their own self rating, than they had before the cancer treatment. However, it is documented that many patients receiving chemotherapy do not remember having a discussion with their oncologist about early menopause, changes in sexual responses and fertility issues (Duffy, Allen and Clark 2005). This could be related to the ability or inability
to recall all the information received at the consultation. Issues surrounding sexuality would seem particularly pertinent in the context of cancer care, since the more common treatments for cancer, such as surgery, chemotherapy, radiotherapy, hormone therapies and/or biological responses, can impact upon sexuality (Ganz, Desmond, Belin, Meyerowitz and Roland 1999). Chemotherapy is a systematic treatment associated with the side effects of ovarian toxicity resulting in premature menopause (Knobf 1998), infertility (Mc Coy 2004) alopecia and altered body image (Turner 2004). In the field of breast cancer women whose disease is oestrogen/ progesterone receptor positive are all treated adjuvantly for five years or maybe even more by hormonal manipulation.
Tamoxifen has been the drug of choice and can cause irregular menstrual cycles, oligomenorrhea, or amenorrhea. No articles have been published about sexual function or response in women with breast cancer treated by aromatase inhibitors (Pelusi 2006).
Body image and sexuality can be greatly affected by cancer. Many women come into the oncology setting with an already poor body image or diminished sexual function. An organized approach is crucial to assess patient need and advise accordingly (Pelusi 2006).
Many health care providers focus on follow up for cancer recurrence but not for late effects of cancer or its treatment. During the follow up period, cancer is more like a chronic condition. People may be free of disease, or they may have chronic difficulties associated with it or its treatments, as discussed above (Lewis 2006). At an American conference the attendees emphasized the need for a paradigm shift from illness orientation to a wellness approach. There is a need for education to assist patients with the transition from acute treatment to follow-up, from being a patient to being a survivor and to become an active person (Lewis 2006). Following a cancer diagnosis patients engage in various coping behaviours to maintain or restore their emotional well-being (Stanton 2006). Interestingly, one way by which individuals cope with a stressful life event is to derive some positive
meaning from the experience. People may change their personal priorities and their views of themselves to find meaning in their cancer experience. Retrospective studies report patients as having a greater appreciation of life, changes in self perception, improvement in close relationships and altered life priorities (Fredette 1995) (Landmark, Strandmark and Wahl 2001) (Lampic, Thurfjell, Berg, Carlsson, and Sjoden 2003).