The phenomenon of making decisions during the experience of early breast cancer

Breast cancer patients are faced with many decisions about their treatment, relationships and lives. The aims of this study were: to provide an understanding of the phenomenon of making decisions during the experience of early breast cancer, and to describe the types of decisions these patients are typically faced with. Previous research has focused largely on describing the different ways patients behave when making choices about treatment. However, few studies provide an understanding of the range of decisions women are likely to face, or describe what the experience of making these decisions is like. Hermeneutic phenomenology was used to inform the research. In-depth interviews were conducted with 18 breast cancer patients who had completed treatment. This study provides an understanding of the broad range of decisions with which women may be faced, and presents a new interpretation of what the experience of making decisions is like for women diagnosed with breast cancer. Five existential themes were found to be representative of the experience of making decisions: being challenged, getting ready, surviving, sharing the challenge and interrogating the future. Health professionals can use the understandings presented to improve their therapeutic relationships with patients and further assist women as they work through their experience of breast cancer.     

The experiences of men with breast cancer in the United Kingdom

To investigate the experiences of men with breast cancer across the United Kingdom, a multi-phase study using: (a) focus groups (n = 4) with men and women with breast cancer and with healthcare professionals; (b) questionnaires to men with breast cancer (n = 161); (c) follow-up interviews with these men (n = 30) and (d) reconvening the focus groups (n = 2) for the men and women with breast cancer. The majority of men (84%, n = 135) reported their symptoms early, but were shocked to receive a breast cancer diagnosis. Disclosure of the diagnosis was commonly made to partners (80%, n = 129) and other close family and was influenced by perceptions of embarrassment, stigma and altered body image. Very little information was available to participants; that which was available was often inappropriate as it was intended for women. Over half the sample wanted much more information (56%, n = 90). This study also demonstrated low utilisation of formal support services and initiatives are needed to improve the information and support provided to men with breast cancer after diagnosis and treatment. Increasing the profile of breast cancer in men generally amongst healthcare professionals and the public is also needed.     

The Lived Experience of Australian Women Living with Breast Cancer: A Meta-Synthesis

Background: Breast cancer is the second most common cancer among Australian women. In 2019, an estimated 19,000 women in Australia were diagnosed with breast cancer, with around 3,058 women dying from the disease in the same year. Although many qualitative studies published in Australia exist which examine breast cancer from various perspectives, only limited literature is available which addresses Australian women’s lived experience of breast cancer from diagnosis, treatment and beyond. Method: Meta-synthesis of qualitative studies. Participants who took part in either semi-structured interviews or surveys with open-ended questions were included. A thematic synthesis analysis approach was used. Results: Five themes and 13 sub themes emerged from the data analysis which illustrated the lived experience of Australian women diagnosed with breast cancer. Emotional burden and women’s response towards their breast cancer diagnosis were key themes. Experience of decision- making , social distress, symptoms beyond changes in their body, fertility considerations and their role as mothers were some of the challenges during their treatment. Women coped and adjusted with these challenges through the support of their family, and healthcare providers. Women developed greater empowerment by making their life choices after treatment. Life choices such as getting into a new relationship was challenging for single women. Conclusion: Although most women were emotionally supported following their diagnosis, there are still areas where women could be better supported such as when having to break the news of their breast cancer diagnosis to their children, provision of ongoing emotional support for caregivers of women with breast cancer, providing constant emotional and informational support at the point of diagnosis and during their treatment, tailoring treatments according to different stages of pregnancy, and discussion of fertility treatments in timely manner by healthcare professionals.     

What Do Older Patients with Early Breast Cancer Want to Know While Undergoing Adjuvant Radiotherapy?

The study aims to investigate the information needs and unique illness experiences of older women with early stage breast cancer. Breast cancer patients have expressed a high need for information to help them cope with their disease and treatment decision making. Satisfying information needs can also improve patient outcomes including perceptions of control, levels of distress, and psychological well-being. Focus groups and one patient interview were conducted investigating the informational needs of patients 70 years or older who were diagnosed with stage I breast cancer. Women identified their experiences and information needs related to diagnosis, participation in treatment decision making, treatment onset, and unexpected life changes. They provided several suggestions to healthcare professionals related to breast cancer treatment. The study’s findings increase our understanding of older breast cancer patients’ needs and provide a foundation for the development of a decision aid to help patients better understand their treatment options.     

Understanding Barriers and Facilitators of Breast and Cervical Cancer Screening among Singapore Women: A Qualitative Approach

Objective: The uptake of breast and cervical cancer screening services among women in Singapore remains inadequate. Little is known about how gender norms influence women’s decision to undergo these screening services in a multi-ethnic Asian context. This research aimed to explore how gender-based qualitative factors influence women’s decision to screen. Methods: Qualitative data were collected using semi-structured interviews from 40 racially diverse women aged 25 and above who had visited polyclinics for their chronic disease management. Women were recruited using a purposive maximum variation sampling strategy to ensure representation of their views from the three major ethnic groups and based on inclusion criteria. Interviews were conducted either face-to-face or via telephone call. Interviews were audiotaped and lasted 30 minutes on average. Interviews were conducted until data saturation was reached. The data was transcribed and analysed thematically. Results: Gender norms and gender non-concordance with the healthcare professionals did not inhibit women from undergoing breast and cervical cancer screening services to a large extent. Women were empowered and had a central role in decision-making for screening services. Healthcare initiatives such as subsidies and mobile health applications facilitated the uptake of breast and cervical cancer screening services but can be improved further. Some of the barriers reported by Malay Muslims were not dissimilar to previous qualitative studies with women in this ethnic and religious group. Conclusion: Gender socialisation, empowerment, and healthcare initiatives did not inhibit our study participants’ decision to undergo breast and cervical cancer screening services. However, new initiatives and strengthening of the existing healthcare initiatives are needed to overcome any remnants of gender-related nuances and convert non-doers into doers.     

Factors Affecting Women’s Participation in Breast Cancer Screening in Turkey

Background: Breast cancer is the most frequent cancer type in Turkey and the rest of the world. Regular mammography screening leads to a significant decrease in breast cancer mortality rates. The aim of this study is to analyze the factors that affect Turkish women’s participation in screening. Methods: This qualitative research design is grounded in a phenomenological approach. Fifteen women were selected using a purposive sampling method and participated in in-depth interviews. Interview data was analyzed using thematic content analysis. Results: The breast has a special meaning for participants which is heavily associated with feminity. Breast cancer causes fear because of its potential to undermine women’s sense of feminity. Women’s knowledge about the screening services and the mammography procedure is insufficient with only one third of women obtaining information about screening from healthcare workers. Individual and social factors that affect women’s participation in screening are women’s roles in the family, knowledge and awareness of breast cancer and screening, fear of cancer, anxiety about getting a mammogram, need for spouse-family support, and concerns for privacy. Organizational factors that affect participation are accessibility of breast cancer screening services, guidance given by and communication with healthcare professionals. Conclusion: Women should be better informed about breast cancer and screening services by healthcare professionals. Accessibility of mammography screening should be increased by expanding mobile services. National and institutional policies should be implemented to overcome women’s anxiety and socio-cultural barriers to increase participation in screening.     

Low-income women with early-stage breast cancer: physician and patient decision-making styles

BACKGROUND: Poor women have low rates of breast conservation therapy not explained by differences in insurance status or treatment preferences. The purpose of this study was to explore how low-income women make decisions about breast cancer treatment. METHODS: Twenty-five women diagnosed with early-stage breast cancer through the Nebraska Every Woman Matters program were interviewed about their experiences selecting treatment options. These interviews were transcribed and then analysed using established qualitative techniques. RESULTS: More than half of the women (n=16) described playing a passive role in decision making. Choice was determined by medical factors or not offered by their physicians. Intense emotional distress affected some women's ability to compare options. The women who did engage in a rational decision-making process (n=9) based their choices on concerns about body image and fear of recurrence. CONCLUSIONS: When presented with a choice, and when able to objectively weigh treatment options, low-income women base their treatment decisions on the same issues as those of higher income. Whether differences in income strata alter the doctor-patient power dynamic in favor of physician control over decision making, or whether low-income women are less prepared to engage in a rational deliberative process warrants further study.     

Mastectomy patients' decision-making for or against immediate breast reconstruction

This multi-centred study examined how 93 women due to undergo mastectomy had elected for (n=37) or against (n=56) immediate breast reconstruction. Initial semi-structured interviews were conducted prior to undergoing surgery whilst follow-up interviews 6 and 12 months later examined particpants' experiences of surgery and their views on their decision.Three decision-making styles were identified. Most women (76) reported making quick, 'instant' decisions, whilst 14 sought further information before making their choice. Three women deliberated over their options and found decision-making particularly difficult.Decision-making was influenced by the perceived salience of alternatives, prevailing 'norms' regarding surgical practice within each hospital system and interactions with health professionals. Experiences of surgery often failed to match patients' pre-surgical expectations and the process of adjusting to the impact of surgery continued throughout the following year, during which women contended with a range of problems including pain, scarring and adjusting to a reconstructed breast. However, most women reported themselves satisfied with their decision and justified their choices by focussing on positive aspects of their surgery.Whilst many women make a quick decision about breast reconstruction, research needs to explore ways of facilitating decision-making amongst those who find this decision particularly difficult.     

Perceived concepts of continuity of care in people with colorectal and breast cancer--a qualitative case study analysis

We aimed to develop ideas on continuity of cancer care. In-depth qualitative interviews were conducted with 28 people. Seven had cancer. Each person with cancer nominated a close person and a primary and secondary health care professional. We examined from four perspectives: experiences of the initial diagnosis; subsequent treatment; views on continuity of care; information given about the illness; psychological/physical impact of cancer and communication with professionals, family and friends. Perceived continuity of care was influenced by the actions of patients', involvement of close contacts and engagement in shared decision making. Additionally communication between primary and secondary care, the role of various health professionals and hospital administrative systems strongly influenced continuity of care. Informational, management and relational continuity have been previously described. Our data uncovered the effect of patients' actions and the involvement of close friends and families on continuity of cancer care. People with cancer should be enabled to influence continuity of their care. Full recognition of the role of health professionals, different approaches to sharing information with patients and tightening of hospital administrative systems should also be considered.     

The experience of making treatment decisions for women with early stage breast cancer: a diagrammatic representation

Women who are making decisions about treatment for early stage breast cancer interact with a number of people when they are considering their treatment options and the impact breast cancer will have on their lives. Previous research has considered patient preferences for involvement in treatment decision-making and proposed factors that may influence breast cancer treatment decisions. However, to date, there has been a paucity of research focusing on the experience of making treatment decisions from the women's perspective. The aim of this paper is to describe the relationships between the women, the medical practitioners and other people, and to consider features that may be influential in the experience of making treatment decisions. Two models are proposed to represent concepts that are linked to the experience of making treatment decisions. The first model proposed has been formulated to represent factors that may influence the treatment decision. The second model highlights aspects of the women's lives that may be affected. This paper discusses concepts that are presented in the conceptual models and makes suggestions for future studies relating to the experience of making treatment decisions for women with breast cancer.     

An international feasibility study of parental decision making in pediatric oncology

PURPOSE/OBJECTIVES: To describe parental decision making about treatment options for children with cancer and determine the feasibility of a similar but larger international study. DESIGN: Exploratory. SETTINGS: A pediatric catastrophic illness research hospital in the United States and children's hospitals in Australia and Hong Kong. SAMPLE: A convenience sample of 43 parents (5 fathers and 38 mothers ages 23-59 years). METHODS: Six open-ended interview questions posed to parents during private individual interviews. Content analysis techniques were used. MAIN RESEARCH VARIABLES: Parental perceptions of (a) factors considered in the decision-making process, (b) behaviors of healthcare professionals that affected the process, and (c) satisfaction with the process. Feasibility of a larger study was estimated by considering ease of access to parents, number of refusals to participate, understanding of the interview questions, and level of interest at each setting. FINDINGS: Access to parents was possible at all sites. Refusal to participate was reported only at the U.S. site. Certain factors (e.g., getting information from the healthcare team, trusting staff) were important to all parents considering end-of-life decisions. Site-specific factors included considering alternative therapies (at the Australian site) and strengthening faith (at the U.S. site). CONCLUSIONS: A larger international study of parental decision making is feasible. Sufficient similarities in parental decision making exist across these sites to justify future efforts to identify universal decision-making factors that, in conjunction with site-specific differences, could be helpful in developing guidelines for healthcare professionals who assist parents in making treatment-related decisions for a sick child.     

Caring demands and delay in seeking care in African American women newly diagnosed with breast cancer: an ethnographic, photographic study

PURPOSE/OBJECTIVES: To describe the caring behaviors and demands of African American women newly diagnosed with breast cancer and to consider the influence of caring on the women's decision to delay prompt diagnosis and maintain continuing treatment. DESIGN: Focused ethnographic design using photography. SAMPLE/SETTING: 13 African American women (ages 30-66) purposefully selected from two oncology clinics in the mid-South. METHODS: Ethnographic interviews (transcribed verbatim), observations at informant-selected sites, field notes, and snapshots of caring taken by the women where caring occurred were analyzed using Lelninger's phases of ethnographic analysis. FINDINGS: Major themes were (a) generic caring for others and self as meaningful and as promoting continued commitment to diagnosis and treatment, (b) generic and professional caring from others as supportive to the women in "going on," and (c) noncaring related to a "wait and see" attitude of healthcare providers and of women in delaying early diagnosis. CONCLUSIONS: African American women's caring both for and from others was supportive in seeking and continuing diagnosis and treatment. The women with cancer viewed ensuring early diagnosis and continued treatment for other women as their "mission." Delay by providers and women requires further research. IMPLICATIONS FOR NURSING PRACTICE: Nurses must advocate assertiveness for African American women in seeking help for breast cancer symptoms and in challenging providers who adopt a "wait and see" attitude when symptoms are present. Taking snapshots, in addition to fostering the research process, is suggested as a potentially helpful intervention for women as they work through their experiences during treatment for breast cancer.     

A model for community participation in breast cancer prevention in Iran

Context: Genuine community participation does not denote taking part in an action planned by healthcare professionals in a medical or top-down approach. Further, community participation and health educationon breast cancer prevention are not similar to other activities incorporated in primary health care services inIran. Objective: To propose a model that provides a methodological tool to increase women’s participation inthe decision making process towards breast cancer prevention. To address this, an evaluation framework wasdeveloped that includes a typology of community participation approaches (models) in health, as well as fivelevels of participation in health programs proposed by Rifkin (1985&1991). Method: This model explains thecommunity participation approaches in breast cancer prevention in Iran. In a ‘medical approach’, participationoccurs in the form of women’s adherence to mammography recommendations. As a ‘health services approach’,women get the benefits of a health project or participate in the available program activities related to breastcancer prevention. The model provides the five levels of participation in health programs along with the ‘healthservices approach’ and explains how to implement those levels for women’s participation in available breast cancerprevention programs at the local level. Conclusion: It is hoped that a focus on the ‘medical approach’ (top-down)and the ‘health services approach’ (top-down) will bring sustainable changes in breast cancer prevention andwill consequently produce the ‘community development approach’ (bottom-up). This could be achieved usinga comprehensive approach to breast cancer prevention by combining the individual and community strategiesin designing an intervention program for breast cancer prevention.     

Association of Knowledge and Cultural Perceptions of Malaysian Women with Delay in Diagnosis and Treatment of Breast Cancer: a Systematic Review

Background: Breast cancer is the most common cancer and the leading cause of cancer mortality amongwomen of all ethnic and age groups in Malaysia. Delay in seeking help for breast cancer symptoms is preventableand by identifying possible factors for delayed diagnosis, patient prognosis and survival rates could be improved.Objectives: This narrative review aimed to understand and evaluate the level of in-depth breast cancerknowledge in terms of clinical breast examination and breast self-examination, and other important aspectssuch as side-effects and risk factors in Malaysian females. Since Malaysia is multicultural, this review assessedsocial perceptions, cultural beliefs and help-seeking behaviour in respect to breast cancer among different ethnicgroups, since these may impinge on efforts to ‘avoid’ the disease. Materials and Methods: A comprehensiveliterature search of seven databases was performed from December 2015 to January 2015. Screening of relevantpublished journals was also undertaken to identify available information related to the knowledge, perceptionand help-seeking behaviour of Malaysian women in relation to breast cancer. Results: A total of 42 articles wereappraised and included in this review. Generally, women in Malaysia had good awareness of breast cancer and itsscreening tools, particularly breast self-examination, but only superficial in-depth knowledge about the disease.Women in rural areas had lower levels of knowledge than those in urban areas. It was also shown that books,magazines, brochures and television were among the most common sources of breast cancer information. Delayin presentation was attributed mainly to a negative social perception of the disease, poverty, cultural and religionpractices, and a strong influence of complementary and alternative medicine, rather than a lack of knowledge.Conclusions: This review highlighted the need for an intensive and in-depth breast cancer education campaignsusing media and community health programmes, even with the existing good awareness of breast cancer. Thisis essential in order to avoid misconceptions and to frame the correct mind-set about breast cancer amongwomen in Malaysia. Socio-cultural differences and religious practices should be taken into account by healthcare professionals when advising on breast cancer. Women need to be aware of the risk factors and symptomsof breast cancer so that early diagnosis can take place and the chances of survival improved.     

Symptom Perceptions and Help-Seeking Behaviours of Omani Patients Diagnosed with Late-Stage Colorectal Cancer: A Qualitative Study

Objective: Colorectal cancer (CRC) is the fourth leading cause of mortality in Oman, with most patients diagnosed at advanced stages. Early diagnosis of CRC improves prognosis and survival rate. The aim of this study was to explore the symptom perceptions and help-seeking behaviours (HSBs) of Omani patients diagnosed with late-stage CRC. Methods: Semi-structured individual interviews were conducted with 16 patients. Results: Four main themes emerged, including normalisation and ignorance (patients felt healthy, perceived symptoms as not being serious and related to dietary habits, concealed them or prioritised work and family commitments), self-empowerment and self-management (patients were stubborn, employed ‘wait and see’ approach, used symptomatic or herbal treatments), disclosure and seeking help (patients disclosed symptoms to family members or friends, sought medical help only when symptoms worsened, visited faith healers or travelled abroad for treatment) and healthcare professionals (patients attributed treatment or diagnosis delays to lack of continuity of care, loss of trust in doctors or delays in referral). Conclusion: Patients attributed delays in CRC diagnosis to several factors based on their perceptions of symptoms. Most HSBs driven by sociocultural and emotional causes. Increased awareness of CRC symptoms and modifying HSBs can encourage early diagnosis. Prompting patients to disclose CRC-related symptoms may aid referral decisions.     

Developing an aftercare decision aid; assessing health professionals' and patients' preferences

Personalising aftercare for curatively treated breast cancer patients is expected to improve patient satisfaction with care. A patient decision aid can support women in making decisions about their aftercare trajectory, but is currently not available. The aim of this study was to assess the needs of patients and health professionals with regard to an aftercare decision aid to systematically develop such a decision aid. Focus groups with patients and individual interviews with health professionals were digitally recorded and coded using the Framework analysis. Although most patients felt few aftercare options were available to them, health professionals reported to provide various options on the patients' request. Patients reported difficulty in expressing their need for options to their health professional. Although most patients were unfamiliar with decision aids, the majority preferred a paper‐based patient decision aid, while most health professionals preferred an online tool. The practical implications for the intended patient decision aid are: that a digital tool with paper‐based element should be developed, the patient decision aid should facilitate both rational and intuitive processes and should provide insight in patients' preferences concerning aftercare to discuss these explicitly.     

Development of decision‐support intervention for Black women with breast cancer

Background: Adjuvant therapy improves breast cancer survival but is underutilized by Black women. Few interventions have addressed this problem. This preliminary report describes the process we used to develop a decision‐support intervention for Black women eligible for adjuvant therapy. Aims were to use qualitative methods to describe factors that influence Black women's adjuvant therapy decisions, use these formative data to develop messages for a treatment decision‐support intervention, and pilot test the acceptability and utility of the intervention with community members and newly diagnosed women. Methods: Thirty‐four in‐depth interviews were conducted with breast cancer patients in active treatment, survivors and cancer providers to gather qualitative data. Participant ages ranged from 38 to 69 years. A cultural framework was used to analyze the data and to inform intervention messages. Most women relied on their providers for treatment recommendations. Several women reported problems communicating with providers and felt unprepared to ask questions and discuss adjuvant treatment options. Other factors related to treatment experiences were: spiritual coping, collectivism and sharing breast cancer experiences with other Black survivors. Results: Using these formative data, we developed an intervention that is survivor‐based and includes an in‐person session which incorporates sharing personal stories, communication skills training and decision support. Intervention materials were reviewed by community members, researchers/clinicians and patients newly diagnosed with breast cancer. Conclusion: Patients reported satisfaction with the intervention and felt better prepared to talk with providers. The intervention will be tested in a randomized trial to enhance decision support and increase use of indicated adjuvant treatment. Copyright © 2009 John Wiley & Sons Ltd.     

Backing and forthing: the process of decision making by women considering participation in a breast cancer prevention trial

PURPOSE/OBJECTIVES: To describe the process of decision making by women considering participation in a breast cancer prevention trial (BCPT). DESIGN: Qualitative. SETTING/SAMPLE: Twenty-six women considering participation in a BCPT in the Northeastern United States. METHODS: Women were interviewed one or two times over a period of one year, with each interview averaging 40 minutes in length. The grounded theory method was used to collect and analyze the data. In-depth interviews were conducted with each participant. Data were analyzed using the constant comparative method. MAIN RESEARCH CONCEPTS: Context, decision making, meaning. FINDINGS: The core variable of backing and forthing is a nonlinear complex process of decision making that includes reviewing life, wanting to be sure, chancing and deciding within the contexts of fear, view of self in the world, transgenerational issues, and social support. CONCLUSIONS: The process of decision making for women considering participation in a BCPT is complex. Women tend to make decisions based on what is in their heads and hearts. They often are concerned more about others than they are about themselves. IMPLICATIONS FOR NURSING PRACTICE: Trust in the provider and active involvement in the process is critical to women making a decision to participate in a BCPT. Decision making is unique for each woman; however, understanding the context, the core variables, and the process will help healthcare providers to support decision making.     

Decisional Support throughout the Cancer Journey for Older Women Diagnosed with Early Stage Breast Cancer: A Single Institutional Study

To determine if older women with early stage breast cancer have sufficient decisional support during their breast cancer journey, a questionnaire-based study was conducted at the Sunnybrook Odette Cancer Centre, in Toronto, Ontario, Canada. Women with stages I and II breast cancer, ≥60 years, were contacted upon completion of their adjuvant treatment. A questionnaire was developed based on focus groups, the literature, and consultation with patients and a multidisciplinary team of experts. The questionnaire was divided into six domains as follows: (1) information support surrounding diagnosis, (2) impact of cancer diagnosis on the patient, (3) quality of interaction with healthcare team, (4) decisional support from the healthcare team, (5) additional information needs surrounding treatment decision, and (6) information support during radiation treatment. Ninety-two of 137 patients approached were included in the analysis. Ninety percent were?>?60 years at the time of diagnosis and 65 % had stage I invasive breast cancer. The majority of women received adequate decisional support during their cancer journey. Approximately 90 % of women indicated that they received a high level of support during their cancer diagnosis. We found no significant differences in overall decisional support based on age at diagnosis, education level, ethnicity, or the presence of co-morbidities. However, participants desired additional educational resources such as a worksheet, consultation summary, or workbook to assist in making a treatment decision. The majority of participants felt that they had sufficient support while making a treatment decision for breast cancer.