The nursing research survey Loss of a breast and breast reconstruction - a qualitative survey of women's experiences in relation to losing a breast and having a reconstruction, August 1998, was presented with a poster and a handout at the ICN Centennial Conference in London in June 1999. The text of this handout follows below. The project results were presented in a report - in Danish - which is available for download from the Danish section of this homepage. We have plans to publish an article on the project in Danish - and to provide an English translation of this article on this homepage. The text of the ICN conference handout: Loss of a breast and breast reconstruction – body image and body loss. Presented by: Kirsten Scherrebeck RN, SD (Diploma in nursing and nursing management) Mette Munk, RN Plastic Surgery Ward Z Aarhus Kommunehospital, University Hospital of Aarhus Denmark Summary The presentation ”Loss of a breast and breast reconstruction – body image and body loss” is based on results from a nursing research survey: ”Loss of a breast and breast reconstruction – a qualitative survey of women’s experiences in relation to losing a breast and having a reconstruction” by Kirsten Scherrebeck (RN, SD), Mette Munk (RN), Birthe Pedersen (RN, Master of Science in Nursing, BA, PhD student), August 1998. This survey showed that the impact on women of losing a breast is much larger than they expect beforehand. The women interviewed in this survey described the physical, psychological and social consequences of losing a breast. They described how this body loss effected their self-esteem and how it influenced their views of themselves as a person and as a woman. More specifically, they felt wrong, crooked and impeded – and they spent a considerable amount of energy on hiding their body loss. The women experienced that breast reconstruction – although it was a tough process - gave them a whole body again and made them feel like whole persons. They described the importance of re-establishing their body balance. Of not having to worry about the position of the movable prothesis. Of their re-gained bodily freedom. They described how breast reconstruction had a very positive effect on their self-esteem and quality of life. The women described what meant most to them in the process and their feelings of: - being afraid - feeling lonesome - experiencing losses - experiencing contrasts and emotional conflicts. These experiences and feelings are reflected in all the interviews in relation to both the cancer disease and what happened to the women’s bodies. Background Breast cancer is one the most frequent life threatening diseases among Danish women – and the frequency of the disease is increasing. Approximately 3.600 Danish women a year (out of a population of 5 million) currently have a breast cancer diagnosis and approximately 75% of them have a mastectomy as a part of their treatment. A general current tendency is increased focus on body and body image. In the future, nursing care must be based on a holistic view of patients’ situation and experiences. These are some of the reasons for the initiation – in the Plastic Surgery Ward Z at Aarhus Kommunehospital (”Aarhus Municipal Hospital”), Denmark - of the nursing research project mentioned above. The basis for the research project was an interest in assuring and improving the quality of nursing care to patients who have experienced body altering surgery as an element of cancer treatment. The background for this was, primarily, issues from plastic surgery nursing practice related to providing nursing care to women who have lost a breast because of cancer and who – after a minimum of one year – are sent to hospital to have a breast reconstruction. Until now, there has been very little documented knowledge in this area taking the patient’s perspective – even if the problems related to body loss, body alterations and reconstruction are very evident in practical nursing care. Aims The survey aimed at establishing an increased knowledge and understanding of women’s experiences in relation to losing a breast and having a reconstruction after breast cancer surgery. Method The survey was based on a framework of phenomenological, hermeneutic theories. Data was collected through semi-structured interviews where women told about their experiences in relation to: - losing a breast - wishing – and deciding for – a breast reconstruction treatment. All interviews were recorded on tape and transcribed. Data were subjected to qualitative analysis where the women’s essential experiences were identifying and put into perspective. Interviews Seven Danish women at ages 48 – 60 years were interviewed. One woman had a tissue expanding prothesis reconstruction while the other six women had an abdominal flap reconstruction. Results The interviews revealed breast cancer and breast reconstruction to be a complex experience. The process may be divided into four phases reflected in the interviews: - periods of waiting - receiving a breast cancer diagnosis - experiencing body loss - having a breast reconstruction. The women experienced a series of difficult new life situations that they had to cope with. In particular, the transitions from familiar to new situations led to severe strains. These were: - the transition from being healthy to having – and having to live with – a serious disease - the transition from having a whole body to having to live with a body loss - the transition from living with a body loss to having a breast reconstruction - the transition from having a breast reconstruction to being restituted. The impact of a body loss The body loss: - decreased the women’s quality of life - decreased their self-esteem - made them feel wrong, crooked, impeded, out of balance, amputated, ugly – and stigmatized by their cancer disease. The impact of breast reconstruction Breast reconstruction: - improved the quality of life to the women - improved their degree of self-esteem - provided a feeling of being a whole woman and a whole person - re-established a sense of physical balance - re-established a bodily freedom - provided certainty about the breast’s appearance - provided a feeling of being more healthy. As drawbacks, breast reconstruction also entailed scars, some disturbance of physical sensibility in the area of operation, periods with pain and periods with a loss of working capacity. Perspectives The survey provides an insight into the complex experience of breast cancer as a life threatening disease and the loss of a breast as a threat to the personal identity, female identity and sexual identity. Thus, the survey provides knowledge which may be used in strengthening the quality of future nursing care to breast cancer patients in general, and mastectomized patients and breast reconstructed patients in particular - as well as to other patients who have experienced body altering surgery or body loss as a result of their treatment. The results will primarily be utilized in practical nursing care. Secondly, through the Internet the results will be made available to (future) patients and to the general public.