Domains of distress: the experience of breast cancer in Australia.

PURPOSE/OBJECTIVES: To describe difficulties experienced by women after treatment for primary breast cancer.

DESIGN

Descriptive and exploratory.

SETTING

Queensland, Australia.

SAMPLE

245 women (70% response rate) less than 16 weeks postsurgery for breast cancer completed a survey. The mean age for this sample was 55 years; 71% had undergone mastectomy, and 29% had undergone conservative breast surgery.

METHODS

Focus groups were used to generate items for the survey, "Experience of Breast Cancer Questionnaire" (EBCQ). The EBCQ and the psychological subscale of the Rotterdam Symptom Checklist (RSCL) were administered by mail to the sample.

MAIN RESEARCH VARIABLES

Psychological distress, fear of recurrence, decisional uncertainty, informational support, self-image and social relationships, sexual morbidity, and physical effects of treatments.

FINDINGS

Factor analysis of the EBCQ identified five factors, accounting for 60% of the variance. These included psychological effects, treatment concerns, physical effects, self-image, and chemotherapy effects. Four of the five subscales had reliability coefficients of greater than 0.80. Psychological effects included cognitive and emotional effects. Treatment concerns included decisional uncertainty and poorly perceived informational support. Physical effects reflected the symptom pattern of axillary dissection. Self-image included breast loss and social isolation.

CONCLUSIONS

Nurses who assist women in adjusting to breast cancer should consider the effect of fear of recurrence and perceptions of body image on the recovery process. Because participation in treatment decisions may increase the demands on women at diagnosis, informational support appropriate to each woman's needs is essential. How self-esteem can affect self-image and social relationships after breast cancer requires further investigation.

IMPLICATIONS FOR NURSING PRACTICE

Understanding the experience of illness from the perspective of the patient assists nurses in validating their nursing practice and provides clinically relevant information to guide intervention. In particular, supportive psychological care should target both emotional and cognitive responses to breast cancer. Informational support is integral to a patient's satisfaction with treatment decisions and is likely to predict adjustment. When assisting women to adjust to self-image changes, nurses may need to target women's perceptions about their body image.