The information needs of women newly diagnosed with breast cancer

Nurses can play a key role in patient education, including providing patients with useful and approrate information Rather than focusing on the process of education or information giving by nurses, this study places emphasis on the content of that information by taking the patients'perspective and asking the patients themselves what particular types of information are perceived as important at a specific point in time The aim of the study was to explore what particular types of information were important to women newly diagnosed with breast cancer, to enable nurses and other health care professionals to utilize their time as effectively as possible and provide a high-quality service to individuals in their care Women with breast cancer (a mean of 2 5 weeks from diagnosis) were interviewed and asked to compare items of information The items of information were presented m pairs and the women stated a preference for one item in that pan- Thirty-six pairs were presented in total The analysis involved the use of a Thurstone scaling model, which allowed rank ordermgs, or profiles of information needs, to be developed, reflecting the perceived importance of each item Information about the likelihood of cure, the spread of the disease and treatment options were perceived as the most important items of information at the tune of diagnosis Other information needs, in order of descending priority, included information about the risk to family, side-effects     

A comparison of the information needs of women newly diagnosed with breast cancer in Malaysia and the United kingdom

Little is known about the information needs of women with breast cancer in non-Western societies. This study examined the priority information needs of 100 women with breast cancer in Malaysia and compared the findings to previous work involving 150 women diagnosed with breast cancer in the United Kingdom. The study used a valid and reliable measure, the Information Needs Questionnaire (INQ). The INQ contained 9 items of information related to physical, psychological, and social care, used successfully in Canada and the United Kingdom. The INQ was shown to have cross-cultural relevance and sensitivity. For Malaysian women, information about likelihood of cure, sexual attractiveness, and spread of disease were the most important information needs. For UK women, similar priorities were evident, apart from the item on sexual attractiveness, which was ranked much lower by women in the United Kingdom. The cultural similarities and differences that emerged from this study have implications for nurses in the cancer field caring for people from a diversity of cultural backgrounds. Breast care nurses are not a feature of the Malaysian healthcare system, although the findings from this study support the view that specialist nurses have a vital role to play in meeting the psychosocial needs of women with breast cancer in non-Western societies.     

Meeting the information needs of women with breast cancer: Piloting a nurse-led intervention

This study evaluated a telephone intervention, administered by specialist breast care nurses, that aimed to meet the information needs of women with breast cancer. The intervention was developed from previous work that examined priority information needs. Participants were allocated to a telephone intervention (n = 67) or control group (n = 68). Data were collected by means of semi-structured interviews with participants at two time points (3 months and 8-12 months post-diagnosis) and focused on patient satisfaction with sources of information, information needs and psychological morbidity. Interviews were also conducted with breast care nurses to ascertain their views on administering the intervention. The intervention group reported fewer physical problems at Time 2 and were more likely to have had their information needs met than women in the control group. The control group were more likely to utilise media sources of information at Time 2 whereas women in the intervention group reported breast care nurses as their most prominent source of information. There were no significant differences in psychological morbidity between the two study groups. The findings indicate that the intervention is a feasible and acceptable approach to meeting the information needs of women with breast cancer. Further research is required to evaluate the intervention in a randomised controlled trial.     

The information needs and source preferences of women with breast cancer and their family members: a review of the literature published between 1988 and 1998

A comprehensive and critical literature review was conducted to examine the information needs and source preferences of women with breast cancer and their family members. Relevant papers published between 1988 and 1998 were reviewed and despite their having several methodological weaknesses, a number of conclusions can still be drawn. First, women with breast cancer have distinct needs for information throughout their breast cancer journeys, indicating that information needs change with time since diagnosis and with treatment-related events. Second, family members of women with breast cancer also have substantial needs for information. Third, women with breast cancer and their family members often prefer verbal forms of information from health care professionals (HCPs), particularly around the time of diagnosis. Women with breast cancer, however, are often dissatisfied with the information they receive from HCPs. Further, the family members of women with breast cancer often perceive their information needs to be ignored by HCPs. Finally, few studies have focused specifically on the information needs and source preferences of family members of women with breast cancer. These findings have a number of implications for nursing, both for clinical practice and nursing research, and these are discussed in the review.     

Evaluating the self-assessed support needs of women with breast cancer

Evaluating the self‐assessed support needs of women with breast cancer Aims of the study. The first aim of the study was to identify the self‐assessed support needs of women with breast cancer at various points of illness and, secondly, to establish if these needs formed clusters which could provide the basis for developing a standardized scale of needs for use by breast care teams in the evaluation of care. Background. It has been found that support given to women with breast cancer has a positive effect upon their reactions to the illness and may even prolong their survival. Given that breast cancer affects a large number of women it is obviously important that those affected receive, in addition to the best available medical treatment, the type of support that best meets their needs. This study aimed to provide information on the impact of breast cancer and the need for various types of support by examining women’s own assessment of their needs at different stages of their illness. Design and methods. A purposive sample of 12 women with a diagnosis of breast cancer was selected in one health authority in England, United Kingdom (UK). Women selected represented a wide age range (between 26 and 58), were married or in long‐term cohabiting relationships and were at different points on the illness trajectory. Women were invited to take part in a semi‐structured interview about their experiences of breast cancer. The data from these interviews were analysed using the software package Qualitative Solutions and Research, Nonnumerical Data Indexing, Searching and Theorizing (QSR*NUDIST). Following this content analysis, a questionnaire was formulated which divided statements into seven categories: diagnosis, treatment, support, femininity and body image, family and friends, information and after care, to be rated on a Likert scale ranging from ‘of no importance’ to ‘extremely important’. Questionnaire data were analysed by means of a one‐way analysis of variance (for three independent variables) or t‐test for two independent variables. Results. The questionnaire was sent to 971 women and achieved a response rate of 50·4%. The mean score for statements of need reached the level of point 4 on the Likert scale (important) with three exceptions: having professional help with family problems and domestic upheaval, coping with feelings of anger and dealing with the question ‘why me?’ Conclusion. With the above three exceptions, women experienced a high level of need associated with a diagnosis of breast cancer. Studies of this kind should enable resources to be targeted to areas of highest need.     

Information needs of adolescents when a mother is diagnosed with breast cancer.

This pilot study was undertaken to increase our understanding of the information needs of adolescents when a mother is diagnosed with breast cancer. In-depth interviews with 13 adolescents provided insight into the types of questions they had at the time of their mother's diagnosis and how satisfied they were with the access they had to information. These adolescents had many questions about cancer and its treatment, specific questions about their mother's disease and survival, and concerns about their own risk. Each sought information on their own in addition to conversations with one or both parents. They identified their most pressing concern as the need to know about their mother's survival. All felt it was important to have access to information and to have someone with whom they could talk about what was happening. This person needed to be someone with whom they were comfortable and whom, in turn, had both credibility and comfort with emotions. Clearly, adolescents experience needs for information when their mother is diagnosed with breast cancer. Cancer nurses can assist women diagnosed with breast cancer plan how to support their adolescent children and meet the needs for information.     

Healthcare and support needs of women with suspected breast cancer

AIM: This paper is a report of a study to investigate changes in the healthcare and support needs during the diagnostic period, and factors that affect these needs in women with suspected breast cancer. BACKGROUND: Although the needs of women with breast cancer are well recognized, few studies have examined the needs of women with suspected breast cancer during the diagnostic period. METHOD: This longitudinal study used an investigator-developed, self-administered questionnaire to collect data from 127 women in Taiwan on three occasions: notification of need for breast biopsy, before biopsy and after diagnosis. The data were collected from November 2004 to April 2005. FINDINGS: Participants had high need levels before and after diagnosis, with their top needs in the domains of healthcare services for diagnosis, follow-up and consultation, and information about the disease. They needed disease- and treatment-related information more than emotional support. Need levels were higher (P < 0.01) before diagnosis than after, highest before biopsy, and lowest after diagnosis. Furthermore, needs were higher (P < 0.01) before than after diagnosis for diagnostic services, disease information, and involvement of family and friends. Higher needs were found in married women with more education and no history of benign tumours. Need level did not differ statistically significantly by age, religious status, degree of social support, family history and breast symptoms. CONCLUSION: Need levels of women with suspected breast cancer vary during the diagnostic period, are highest before breast biopsy, and related to personal characteristics and cultural context. Therefore, during this period, nursing staff should provide patients and families with culturally sensitive, individualized, supportive care.     

Breast health information needs of women from minority ethnic groups

BACKGROUND: For women from minority ethnic groups to make informed decisions about their health, and particularly about whether to participate in breast cancer screening programmes, access to a range of appropriately designed high quality, culturally-specific and sensitive health information is needed. AIMS: Through a critical review of the literature, this paper aims to determine the breast health and breast cancer screening information needs of women from minority ethnic groups and to discuss the implications of cultural difference for nurses in relation to the development and dissemination of health information. METHODS: A critical review of the research literature published in English between 1996 and 2002 was conducted. Electronic and the relevant Cochrane Collaboration databases were searched using a range of search terms to retrieve literature specifically relevant to the aims of the review. The use of personal contacts and posting a request for information on the mailing list at minority-ethnic-health@jiscmail.ac.uk facilitated the retrieval of grey literature. All references retrieved were entered on a bibliographic database. The title and abstract of each was examined to assess it for inclusion in the review. FINDINGS: There was little published information about specific breast cancer screening information needs from the perspective of women from minority ethnic groups. In comparison with the indigenous population, the information needs of people from minority ethnic groups differ in relation to their cultural beliefs and values and the effects of these on health care practices. Inadequate knowledge about breast health and breast cancer screening may be a consequence of the provision of insufficient or culturally inappropriate information. CONCLUSIONS: There is a dearth of research highlighting breast health and breast cancer screening information needs of women from minority ethnic groups. In providing information, their needs appear to have been an 'add on'. Health care professionals' lack of understanding about cultural beliefs, values and knowledge, together with racial stereotyping and misconceptions about cancer in minority ethnic groups, pose challenges to information dissemination. Health care professionals need to work collaboratively with women from minority ethnic groups, identifying culturally-specific beliefs and values about breast cancer, breast cancer risk and screening, in order to develop appropriate and acceptable information and dissemination strategies.     

上海市妇女对乳腺癌及其早期筛查认知情况的调查

目的了解上海市妇女对于乳腺癌及早期筛查的认知情况和获取相关信息的来源。方法采用乳腺癌及其早期筛查的知识问卷和有关信息来源的问卷对739名妇女进行调查。结果92%的妇女知道乳房肿块是乳腺癌的早期症状,有98.1%和95.7%的妇女认为乳腺自我检测和乳腺临床检查可以早期发现乳腺癌,只有26.7%和24.6%的妇女知道肥胖和年龄是乳腺癌的高危因素。居住在市区、文化程度高的妇女,乳腺癌的认知情况较好(P<0.01)。目前妇女了解乳腺癌早期筛查知识的渠道主要是通过报纸或杂志(43.3%),55.2%的人最想从医师或护士处得到相关信息,同时也有45.3%的人认为从医师或护士处得到的信息最有助于她们做出早期筛查的决定。结论妇女对于乳腺癌及早期筛查知识的掌握程度分布不均,传媒要加强对乳腺癌早期筛查的宣传,护理人员要加强有关的健康教育,针对不同人群实施有效的健康指导,以提高妇女的认知水平。     

Competency standards and educational requirements for specialist breast nurses in Australia

There is substantial evidence that Specialist Breast Nurses (SBNs) make an important contribution to improved outcomes for women with breast cancer, by providing information and support and promoting continuity of care. However, a recent study has identified significant variation in how the role functions across individual nurses and settings, which is likely to contribute to varied outcomes for women with breast cancer. The project reported in this paper illustrates how a set of competency standards for SBNs were developed by the National Breast Cancer Centre. The competency standards were developed through a review of published literature and consultation with key stakeholders. The resulting SBN Competency Standards reflect the core domains and elements of SBN practice seen as integral to achieving optimal outcomes for women with breast cancer. This project identifies the SBN as a registered nurse who applies advanced knowledge of the health needs, preferences and circumstances of women with breast cancer to optimise the individual's health and well-being at various phases across the continuum of care, including diagnosis, treatment, rehabilitation, follow-up and palliative care. The five core domains of practice identified are: Supportive care; Collaborative care; Coordinated care; Information provision and education; and Clinical leadership. A variety of education programs are currently available for nurses who wish to learn about breast cancer nursing. The majority of stakeholders consulted in this project agreed that a Graduate Diploma level of education is required at minimum in order for an SBN to develop the minimum level of competence required to perform the role. The evidence supports the view that as an advanced role, nurses practising as SBNs require high-quality programs of sufficient depth and scope to achieve the required level of competence.     

An evaluation of information cards as a means of improving communication between hospital and primary care for women with breast cancer

This paper describes an intervention study aimed at improving communication between hospital services and the primary health care team. A series of information cards were developed by breast specialist secondary care professionals for members of the primary health care team. Women with breast cancer were involved in the communication pathway and were asked to take the information cards to their own general practitioner (GP) practice. It was envisaged that women would be more likely to utilize the primary health care team for information if they were aware that the primary health care team was in receipt of information specific to the treatment they had received. Women newly diagnosed with breast cancer were allocated to either an intervention (n=38) or non-intervention (n=38) group. Patient interviews were carried out around the time of diagnosis and at 4 months from diagnosis. Interviews were also carried out with 31 GPs to ascertain their views on the provision of information for women with breast cancer, and on the information cards if relevant. The study findings were interesting although not significant in terms of the direction anticipated. The cards did not impact on the utilization of the primary health care team and women in the intervention group were no more likely to utilize primary care sources of information than women in the non-intervention group. Factors such as the long-standing relationship women had with their GP, the perceived lack of specialist knowledge on the part of GPs and district nurses, and the women's perception that information seeking was not a tangible reason for primary care contact had an impact on information-seeking behaviour.     

Information needs of women during early treatment for breast cancer

This study assessed the information needs of 70 women with breast cancer being treated by surgery, chemotherapy or radiation therapy. Information needs were measured by the breast cancer version of the Toronto Informational Needs Questionnaire (TINQ-BC). All women had high information needs, irrespective of type of treatment received. They mainly wanted information about their disease, treatments and investigative tests. An examination of individual items on the TINQ-BC revealed that all women wanted information about recurrence, specifically they wanted to know if the cancer would come back and how to tell if it had recurred. The results provide nurses with some direction as to what information to give women receiving early treatment for breast cancer.     

Identifying the educational needs and concerns of newly diagnosed patients with breast cancer after surgery

Many factors may interfere with the ability of women newly diagnosed with breast cancer to cope with treatment. Nurses should be aware of patients' needs during this critical time. The purpose of this study was to identify the educational needs and concerns of newly diagnosed patients with breast cancer after surgery. A phone interview with patients was conducted approximately one week after breast cancer surgery. A convenience sample of 200 patients was recruited from four hospitals within a large midwestern healthcare system. The subjects were interviewed by breast health specialists and navigators involved in their education and support and were asked to participate in a short interview during a surgical follow-up phone call. Study results indicate that fear of recurrence and anxiety regarding postoperative treatments accounted for more than 65% of the responses to the question "What concerns you most about your new diagnosis?" Emotional, social, and physical limitations were identified as most important in dealing with a breast cancer diagnosis. As breast health specialists and navigators, nurses can improve the quality of care for women with breast cancer and their families by providing additional support services and post-treatment information during the initial education and follow-up call.     

Breast cancer. Part 3: Psychosocial care

Psychosocial care, information-giving and issues surrounding patient choice are important aspects in the nursing care of women with breast cancer. Patients with breast cancer consistently identify communication as an area of central importance. The nurse, specialist or otherwise, has an important role in addressing patients' needs following diagnosis and treatment for breast cancer.     

The information needs of men with breast cancer

The information needs of men with breast cancer are under-researched. This article uses questionnaire data from 161 men with breast cancer, and in-depth interview data from a sample of 30 of these men, to explore perceptions of information needs and how best to meet these needs. These men typically received verbal information or written information in the form of leaflets or booklets. Generally this information was helpful, was pitched at about the right level and contained the right amount of information, but was of variable relevance given that it had not been developed specifically for men. Men with breast cancer would benefit from receiving gender-specific information, given the limitations of existing information sources. Of all healthcare professionals, breast care nurses were described as being most helpful in terms of providing both information and practical support.     

Perceptions, expectations, and attitudes about communication with physicians among Chinese American and non-Hispanic white women with early stage breast cancer

Purpose

Asian Americans have consistently reported poorer communication with physicians compared with non-Hispanic Whites (NHW). This qualitative study sought to elucidate the similarities and differences in communication with physicians between Chinese and NHW breast cancer survivors.

Methods

Forty-four Chinese and 28 NHW women with early stage breast cancer (stage 0-IIa) from the Greater Bay Area Cancer Registry participated in focus group discussions or individual interviews. We oversampled Chinese women because little is known about their cancer care experiences. In both interview formats, questions explored patients' experiences and feelings when communicating with physicians about their diagnosis, treatment, and follow-up care.

Results

Physician empathy at the time of diagnosis was important to both ethnic groups; however, during treatment and follow-up care, physicians' ability to treat cancer and alleviate physical symptoms was a higher priority. NHW and US-born Chinese survivors were more likely to assert their needs, whereas Chinese immigrants accepted physician advice even when it did not alleviate physical problems (e.g., pain). Patients viewed all physicians as the primary source for information about cancer care. Many Chinese immigrants sought additional information from primary care physicians and stressed optimal communication over language concordance.

Conclusions

Physician empathy and precise information were important for cancer patients. Cultural differences such as the Western emphasis on individual autonomy vs. Chinese emphasis on respect and hierarchy can be the basis for the varied approaches to physician communication we observed. Interventions based on cultural understanding can foster more effective communication between immigrant patients and physicians ultimately improving patient outcomes.     

The information needs of women who have undergone breast reconstruction. Part I: decision-making and sources of information.

Women diagnosed with breast cancer treated by mastectomy can choose breast reconstruction. The information needs of women undergoing this procedure have only been addressed in the research literature to a limited extent. A qualitative approach was used to explore the experiences of women who had undergone breast reconstruction with a specific focus on their views on how they considered their information needs could best be met. A purposeful sample of eight women was recruited to participate in two focus groups, each lasting 2 hours. Framework analysis was used to develop an index of key themes and sub-themes which transformed the data into a structured record which facilitated systematic analysis. This paper will present the emergent key themes regarding decision-making about mastectomy and reconstructive surgery and the sources of information perceived to be relevant when preparing for breast reconstruction. Sources of information perceived by the participants as being helpful included the surgeon, the breast care clinical nurse specialist, photographs, contact with other patients, written information, the internet, a tape of the consultation and information videotapes. The breast care clinical nurse specialist played an important role in facilitating the process of receiving information. This study provides useful insight into how health care professionals can inform and prepare women for breast reconstruction.