Living with breast cancer: Iranian women's lived experiences

JOULAEE A., JOOLAEE S., KADIVAR M. & HAJIBABAEE F. (2012) Living with breast cancer: Iranian women's lived experiences. International Nursing Review59, 362-368 Background: Breast cancer is the most common form of cancer among women. Women with breast cancer encounter many psychosocial stresses as well as physical problems. Aim: To capture the meaning of living with breast cancer from the unique perspective and through the lived experiences of Iranian women with breast cancer that were explained with their own words. Methods: A phenomenological approach was used to explore the meaning of living with breast cancer for Iranian women. The patients' feelings and lived experiences with breast cancer were investigated using semi-structured interviews with probing questions with 13 women between 34 and 67 years old. Findings: The participants explained their experiences of living with breast cancer as losing something important, lack of confidence, living with fear, emotional dizziness and the need to be supported with the negative aspects of breast cancer and helped to explore new aspects of life as positive aspects of this event. Conclusion and Implications: Understanding the phenomenon of 'living with breast cancer' seems to be crucial for nurses to help women with breast cancer to find themselves in confronting the consequences of the changes associated with the illness.     

Quality of life of African American breast cancer survivors: how much do we know?

Women affected by breast cancer experience an array of quality-of-life issues that affect their daily living in both short-term and long-term survivorship. Because African American women experience disparities in breast cancer survival, their quality-of-life concerns may paint a different picture from those of other racial and ethnic groups. To gain a better understanding of quality of life in African American women breast cancer survivors, we conducted a review, using an adaptation of Brenner's quality-of-life proximal-distal continuum, of studies that have investigated these women's experiences and associated variables. Twenty-six studies, qualitative and quantitative, were reviewed that identified both deficits and positive outcomes of breast cancer treatment and sequelae, including physical, emotional, social, and patient-provider problems as well as heightened spirituality and positive growth. Although overall global quality of life was favorable in both African American and white survivors, differences existed in the nature and extent of deficits between these 2 survivor groups. Nursing implications of this review point to the need for further rigorous research and wide dissemination of results. Recommendations for practice include tailoring assessments and interventions within the context of the lives of African American women breast cancer survivors.     

Living on the outside looking in: a theory of living with advanced breast cancer

Much of the literature on women's experiences of breast cancer relates to diagnosis and initial treatment. The aim of this research was to develop a theory to explain the meaning and experience of living with advanced breast cancer. A grounded theory approach was used and ten women under the care of one hospice explained their experiences during semi-structured interviews. The findings suggest that there are significant issues and difficulties facing women with advanced breast cancer, culminating in feelings of isolation and the experience of living with the fear of advancing disease. A theory, living on the outside looking in, was developed to explain the experiences of the participants. This integrates the following five categories: reconciling a different me; time bomb; media effect; professional waning; rescuers. The category 'reconciling a different me' was identified as the core variable and had an explicatory relationship to the other four categories. The findings raise issues regarding appropriate support.     

The experience of waiting and life during breast cancer follow-up

Much research exists on quality of life issues with breast cancer survivors. However, there has been little done on the waiting experience itself, and on the experience of follow-up from the women's perspective. Women who have been diagnosed and treated for breast cancer live with the condition for a minimum of 5 years, waiting for the next medical intervention; waiting for the next battery of tests; waiting for the next physician check-up. Throughout most of these years they may feel healthy, but they experience visits to cancer clinics, medical testing, and physician interactions. Women's accounts of their experiences of waiting and life during follow-up for breast cancer has not been the focus of research on the quality of life of breast cancer survivors. In particular research that uses a qualitative approach, in which women recount their experiences in their own language, has been missing. This study used a phenomenological approach, telling the stories of waiting and life throughout follow-up of nine women. The women's experiences are captured in four themes: life-changing; a sense of belonging; uncertainty; needing to know.     

'We've fallen into the cracks': Aboriginal women's experiences with breast cancer through photovoice

Despite some recognition that Aboriginal women who have experienced breast cancer may have unique health needs, little research has documented the experiences of Aboriginal women from their perspective. Our main objective was to explore and to begin to make visible Aboriginal women's experiences with breast cancer using the qualitative research technique, photovoice. The research was based in Saskatchewan, Canada and participants were Aboriginal women who had completed breast cancer treatment. Although Aboriginal women cannot be viewed as a homogeneous group, participants indicated two areas of priority for health-care: (i) Aboriginal identity and traditional beliefs, although expressed in diverse ways, are an important dimension of breast cancer experiences and have relevance for health-care; and (ii) there is a need for multidimensional support which addresses larger issues of racism, power and socioeconomic inequality. We draw upon a critical and feminist conception of visuality to interrogate and disrupt the dominant visual terrain (both real and metaphorical) where Aboriginal women are either invisible or visible in disempowering ways. Aboriginal women who have experienced breast cancer must be made visible within health-care in a way that recognizes their experiences situated within the structural context of marginalization through colonial oppression.     

Art,archetypes and alchemy: Images of self following treatment for breast cancer

PurposeThe loss or alteration of a breast poses a threat to a woman’s selfhood, particularly those aspects that embrace feminine identity such as sexuality and caring. The use of art as a vehicle for recreating a sense of self after breast cancer surgery framed the study that generated the stories reported here. A team of nurse-researchers and professional artists entered into a collaborative partnership aimed at creating life-like prototypes of the torsos of two breast cancer survivors.MethodThe authors sought to understand participants’ experiences of healing through the narratives of their breast cancer journeys and their experiences of creating art through the use of their bodies. The participants consented to having interviews and casting sessions audio-taped. The authors used thematic analysis to explore the narratives.ResultsThe authors present excerpts of stories and comment on how participants articulated the feminine archetype in the form of the Greek goddesses Hestia, Artemis, and Aphrodite. The authors explore the transformative nature of participants’ experiences.ConclusionThe emergence of the goddess archetypes in participants’ narratives was an unanticipated result of the study. The authors invite readers to contemplate these anecdotes and embark on their own quest for deeper knowledge of breast cancer experiences.     

Life after cervical cancer: quality of life among Chinese women

This study explored the meaning of "quality of life" among Chinese survivors of cervical cancer and the impact of cervical cancer survivorship on these women's quality of life. Written responses were used as the means of data collection. The qualitative data were analyzed by using a qualitative content analysis. The meaning of "quality of life", as perceived by 35 Chinese survivors of cervical cancer, included being free of disease, having a good standard of living, having a harmonious family atmosphere, and having a harmonious sex life. The impact of cervical cancer on the Chinese women's quality of life included physical and psychological sequelae, family distress, financial burden, and disruptions to their social functioning and sexual life. Nevertheless, there were positive gains that were reported by these survivors, including changes in their outlook on life, treasuring their life, and better family relationships. This study revealed that the Chinese survivors of cervical cancer identified their sexual life as one of the essential indicators of quality of life. It is necessary to raise nurses' awareness so that women's sexuality-related concerns are addressed. Health professionals also should provide relevant supportive care in order to address this target population's physical and psychosocial needs across the survivorship continuum.     

Living with newly diagnosed breast cancer: a qualitative study of 10 women with newly diagnosed breast cancer

AIM: The aim of this qualitative study was to describe from the perspective of 10 women (aged 39-69 years), their experience of living with breast cancer. BACKGROUND: Although there is increasing research into a variety of aspects associated with breast cancer, there is a continuing need for research to increase nurses' understanding of how women experience living with newly diagnosed breast cancer. DESIGN/METHODS: Following ethical approval, open-ended interviews were analysed, using methods influenced by Grounded Theory. Verifiability and empirical grounding of the theory was established through use of the constant comparative method. FINDINGS: Existential issues arose as an important aspect of living with newly diagnosed breast cancer. The will to live emerged as the central theme. All energy was channelled into a tenacious fight for life. Furthermore, results revealed other aspects in the women's awareness of living with breast cancer, such as their experiences in relation to emotional reactions, bodily physical changes, their female identity, meaningful activities and their social network. CONCLUSIONS: An understanding of how women experience their new and changed life situation is important to the support nurses give in the process of healing. Nurses need this knowledge to be better able to assist women and their families in their development of coping strategies.     

An evaluation of an online intervention to provide social support and health education

Managing chronic illness in the isolation of rural environments is challenging for women who lack access to personal sources of social support and health information. The Women to Women project was designed to provide chronically ill rural women access to support and health information via electronic means. This article reports on the acquisition of computer skills, the perceptions of importance of various aspects of the intervention, and an assessment of women's overall satisfaction with participation in the research project. Findings indicate that the women's self-ratings of computer skills improved significantly over the 22-week intervention and that highly interactive features of the project were rated as most important by the participants. Overall, women found the program beneficial in assisting them to better manage their chronic illness.     

Breast cancer: evaluation of the Common Journey Breast Cancer Support Group

Background. Most studies of cancer support groups have focused on the effects of groups established for research purposes, from the exclusive perspective of the group participants. Aim. This Roy Adaptation Model‐based programme evaluation project focused on identifying the experiences of both participants in and facilitators of a community hospital‐sponsored breast cancer support group. Design. Repeated measures survey methodology. Methods. Ten women with breast cancer and two Registered Nurse group facilitators participated in the programme evaluation project. Qualitative data were analysed using content analysis. Themes extracted from the data were categorized according to the Roy Adaptation Model modes of adaptation. The group participants completed Initial and End of Year Interview Guides and Group Voices Forms; the group facilitators completed the Facilitators’ Voices Form. The Institutional Review Committee of a community hospital approved the programme evaluation project. Results. The Common Journey Breast Cancer Support Group is a community hospital‐sponsored cancer support group established to meet the informational, emotional support, and social support needs of women with breast cancer who reside in a rural state in the New England region of the USA. Responses of participants and facilitators, which reflected all four of the Roy model modes of adaptation, indicated that the combination of information and emotional and social support was effective. Conclusions. Nurses and other health professionals who establish community‐based cancer support groups should consider formal evaluation of the outcomes, from the perspectives of both participants and facilitators, and should publish the results. The results of this programme evaluation project are limited to one breast cancer support group with a small number of female participants and two facilitators. Results cannot be generalized to support groups for other types of cancer or to cancer support groups for men. Relevance to clinical practice. Nurses and other health professionals should consider establishing and facilitating community hospital‐sponsored support groups for women with breast cancer, which have the potential to meet the women's informational, emotional support, and social support needs.     

African American women and breast cancer: notes from a study of narrative

Survival after breast cancer and after all cancers is significantly worse for African American women than for others. Although many reasons have been proposed, no studies have explored the reception of messages about breast cancer by African American survivors of this disease, and how public images and discourses about breast cancer affects both their perceived risk for this disease and their experiences of illness. Narrative accounts of their lived experiences with breast cancer were collected from 23 African American survivors of breast cancer. Three themes have emerged: (a) Breast cancer is perceived to be a white woman's disease; (b) cancer is caused by experiences of repeated traumatic heartbreak; and finally, (c) there is a perceived lack of social support and understanding for the unique life experiences of the African American survivor of breast cancer. Nurses are on the front line of patient care. In the context of the managed care environment, they spend more time with patients than other health care providers and are soundboards for many patient concerns. As such, they can use the information provided in this study to inform high-risk women, current patients, partners, and other individuals in the medical community of how African American women might inaccurately access their personal risks for breast cancer, despite the public emphasis on this disease. Through the use of culturally sensitive pamphlets, nurses and other medical practitioners can also open discussions with underserved and minority patients as a means of realistically addressing some of these women's fears about breast cancer. These fears are barriers to effective cancer prevention because these individuals may consciously or unconsciously link a diagnosis of breast cancer, or even behaviors related to cancer prevention, to a potential death sentence.     

A comparative study of living conditions in cancer patients who have returned to work after curative treatment

Goals of work The goal of this study was to explore living conditions among disease-free cancer survivors participating in the labour force after successful primary treatment. Their living conditions were compared with the conditions of matched controls from the general Norwegian population.Patients and methods Living conditions are social indicators that stimulate social inclusion and reduce exclusion such as economy, employment, health, housing and social participation. A questionnaire covering living conditions with established questions from population surveys was mailed to 852 cancer survivors and 1,548 controls. Valid responses were obtained from 51% cancer survivors (216 women with breast cancer, 49 men with prostate cancer, and 165 with testicular cancer) and 39% controls (317 women and 279 men).Main results Compared to their controls cancer survivors showed no difference in work hours or full-time jobs, but reported significantly poorer physical and mental work capacity. This was associated with significantly more somatic diseases among survivors and poorer general health status in male survivors. The survivors had significantly smaller households and more living space than controls. No significant differences were observed concerning economy or social participation, except that significantly more female survivors than controls stated that they had enough friends.Conclusions In spite of poorer health, tumour-free survivors after breast, testicular, and prostate cancer report mostly equal living conditions compared to matched controls. The protection hypothesis of holding jobs as a precondition for normal living condition was confirmed in our study of a sample of cancer survivors with good outcome.     

Living into old age with the consequences of breast cancer

Purpose of the researchBreast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions, and to identify their information and support needs and preferences.Methods and sampleData were collected from 28 semi-structured qualitative interviews and 2 focus groups (n = 14), with breast cancer survivors aged 70–90, and were analysed using thematic analysis.Key resultsThese older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals.ConclusionsMany breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with comorbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age.     

Drama as a new rehabilitation possibility for women afflicted with breast cancer

The aim of this qualitative longitudinal study was to evaluate drama as a method within the rehabilitation of women afflicted with breast cancer. By purposeful sampling, 11 of a total of 20 women participated in the study and were interviewed 3 times over 9 months. The interviews were transcribed. The data analysis was an inductive latent content analysis. The results show that the women felt that their lives were out of balance before the drama exercises; the female and physical dimension was emphasized. During the drama exercises, it became apparent that breast cancer was a unifying factor; the women were able to share difficult experiences with each other. After the drama group, it appeared that the women's joy of living had returned, as well as better self-confidence, inner peace, and feelings of good health. During group meetings, the women experienced drama, support, and solidarity within a closed group. Important events in their lives were revealed, and the women were given an opportunity to confront their hidden thoughts and feelings and to express them. All the women felt support and solidarity within the group as well as a personal development. Drama can be seen as a suitable rehabilitation method for women with breast cancer.     

Fostering positive experiences of group-based exercise classes after breast cancer: what do women have to say?

Purpose: The adverse side effects of current treatments for breast cancer highlight the need for rehabilitative programmes. Group-based exercise programmes have been found to be effective in reducing symptoms and treatment side effects and improving physical and psychological health in cancer survivors. To assist programme administrators and instructors in the ongoing design and delivery of optimal group-based exercise programmes, we conducted a longitudinal qualitative study to explore breast cancer survivors’ perceptions of the instructor and the climate the instructor created within the context of a group-based exercise programme, and how this contributes to women’s motivational experiences. Method: Seven women participating in an eight-week group-based exercise programme were interviewed at the start and end of the programme. Data were analysed using thematic analysis. Results: The instructor’s attributes (energy, enthusiasm, approachability, knowledge, experience) and her focus on promoting self-improvement, personal progress, skill development and task mastery contributed to participants’ positive experiences, which served to enhance their motivation to remain involved in the programme. Conclusions: Instructors play an essential role in creating a supportive climate and fostering positive experiences in group-based exercise programmes for breast cancer survivors. Hiring caring and knowledgeable instructors who are able to create a supportive climate may enhance breast cancer survivors’ experiences in group-based exercise programmes and promote sustained participation.

• Implications for Rehabilitation

• Promoting self-improvement, personal progress, skill development and task mastery can enhance breast cancer survivors’ adherence to group-based exercise programmes, which can help mitigate the effects of cancer and its treatment.

• In addition to training leaders to run safe and effective programmes, hiring instructors who have high energy, and who are enthusiastic, approachable, knowledgeable and experienced can promote breast cancer survivors’ adherence to group-based exercise programmes.

• Training in breast cancer management is required to allow instructors to understand the complexities of this disease and develop tailored exercise programmes.

• Future research needs to identify training techniques that can effectively promote exercise instructors’ competence in working with breast cancer survivors.

     

Talking circles: Northern Plains tribes American Indian women's views of cancer as a health issue

OBJECTIVE: The purpose of this research was to understand the cultural meanings of cancer among American Indian women from Northern Plains tribes living in western South Dakota and their experiential view of breast and cervical cancer screening. DESIGN AND SAMPLE: Using an exploratory design, a purposive sample of 28 women, 35-75 years of age, were recruited into three Talking Circles. MEASUREMENT: Talking Circle and focus group methodology, combined with Affonso's Focus Groups Analytic Schema, were used to generate contextual data sets including thematic findings. RESULTS: Ten themes emerged indicating interrelationships between cultural traditions and health structures of care. The themes provided a unique perspective for conceptualizing women's experiences with breast and cervical cancer screening. CONCLUSIONS: Incorporating women's cultural experiences into screening services is necessary to address clinical and policy challenges for reducing breast and cervical cancer mortality among American Indian women. Findings from this research will be used to guide a future study investigating breast-screening patterns related to mammography adherence and development of interventions specific to American Indian women.