Information needs and sources of information for women with breast cancer: a follow-up study

This paper reports a study which examined the specific information needs and sources of information for 105 women with breast cancer at two time points, the time of diagnosis and a mean of 21 months from diagnosis At diagnosis the priority information needs concerned survival issues Further from diagnosis survival issues were still a concern, but information about the risk to family members of getting breast cancer showed a significant increase in importance Information about sexual attractiveness was ranked last at both the newly diagnosed and follow-up stages Information sources at the time of diagnosis centred around the specialist breast care service, while further from diagnosis few professional or voluntary sector sources were utilized, with women receiving most of their information from media sources such as women's magazines The relevance of these findings for nurses and other health care professionals is discussed     

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.     

Informational and emotional needs of long-term survivors of breast cancer

AIMS: This paper presents a review of the informational and emotional needs of long-term breast cancer survivors, with particular attention to the different needs of women according to their age and to critiquing healthcare provision to these women. BACKGROUND: Women with a history of breast cancer are the largest group of cancer survivors. While they may be disease-free, their cancer diagnosis has ongoing physical and psychosocial implications for their lives and well-being. METHODS: A literature search for the period 1985 to March 2004 was undertaken using the CINAHL, MEDLINE, CANCERLIT, PubMed and CUIDEN databases and the keywords long-term, breast cancer survivors, needs and social support. Hand-searching was also done, and reference lists of papers were examined for relevant studies. RESULTS: Survivors of breast cancer continue to experience informational and emotional needs during their long-term survivorship, and variation in the amount and type of support required is age-related. However, women's needs are often unmet by oncology teams and they have to find other sources of support, such as self-help groups. Thus, ongoing care is required after completion of medical treatment, and nurses have a significant contribution to make here. CONCLUSIONS: Nursing research on long-term breast cancer survivorship is limited. Future studies need to investigate the unmet needs of long-term survivors of breast cancer and, specifically, explore the kind of support women would like to receive from oncology teams, and particularly from breast cancer nurses.     

Supplemental Cancer Screening for Women With Dense Breasts: Guidance for Health Care Professionals

Mammography is the standard for breast cancer screening. The sensitivity of mammography in identifying breast cancer, however, is reduced for women with dense breasts. Thirty-eight states have passed laws requiring that all women be notified of breast tissue density results in their mammogram report. The notification includes a statement that differs by state, encouraging women to discuss supplemental screening options with their health care professionals (HCPs). Several supplemental screening tests are available for women with dense breast tissue, but no established guidelines exist to direct HCPs in their recommendation of preferred supplemental screening test. Tailored screening, which takes into consideration the patient’s mammographic breast density and lifetime breast cancer risk, can guide breast cancer screening strategies that are more comprehensive. This review describes the benefits and limitations of the various available supplemental screening tests to guide HCPs and patients in choosing the appropriate breast cancer screening.     

Perceptions of supportive communication in Chinese patients with cancer: experiences and expectations

AIM: This paper reports the findings of a study exploring the experiences and expectations of patients with cancer of supportive communication in the context of Chinese culture. BACKGROUND: Patients with cancer experience psychological distress, particularly in the initial period after diagnosis. Supportive communication can positively affect their psychological adjustment. Previous studies have reported the functions, contents, types and sources of informational support for patients with cancer in Western studies, but patients from different cultural backgrounds who have cancer might have different preferences in seeking support. METHODS: Semi-structured interviews were carried out with a convenience sample of 20 Chinese patients with cancer during 2002. Content analysis was used to identify themes within the data. FINDINGS: Chinese patients with cancer have a substantial need to receive informational and emotional support during the period of their hospitalization. Their support networks include doctors, nurses, family members, relatives and fellow patients. The expectations of support from different sources varied according to the nature of the relationship between patients with cancer and providers of support. Patients were active in seeking information and they perceived communication with doctors, nurses and fellow patients as beneficial. Most would only express emotional needs to their close family members and did not expect healthcare professionals to provide emotional support. However, interviewees perceived the caring behaviours of nurses and the emotional support of fellow patients as two important sources of support. CONCLUSION: For Chinese patients, coping with illness and misfortune is largely a private and family affair, and most of them did not expect nurses to meet their emotional needs. Nurses should be aware of the type, timing and source of supportive communication that Chinese patients find valuable. This will help them to provide the appropriate support to meet patients' needs.     

Information needs and decision-making preferences: Comparing findings for gynaecological, breast and colorectal cancer

This study examined information needs and decision-making preferences for women with gynaecological cancers (n=53) using structured interviews and compared findings to previous work involving breast and colorectal cancer patients. Measures of information needs (Information Needs Questionnaire) and decision-making preferences (Control Preferences Scale) were administered to women with gynaecological cancers, consistent with measures previously administered to breast (n=150) and colorectal (n=42) cancer patients. Therefore, statistical comparisons could be made across study groups. Priority information needs were similar across the three cancer groups and related to information about likelihood of cure, spread of disease and treatment options. Patients across study groups preferred to share or delegate decision-making to doctors, rather than make decisions themselves. However, patients with gynaecological and colorectal cancers were more likely to have achieved their preferred role in decision-making than women with breast cancer. There were clear similarities in priority information needs across cancer patients groups. However, decision-making preferences need to be established on an individual basis to ensure that patients are involved in the decision-making process to the extent that they prefer. The research instruments used in this study have potential as clinical guides to enable health professionals to make an individual assessment of needs and preferences.     

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.     

Consumers' and professionals' perceptions of a breast cancer review clinic

AIM: This paper is a report of a study to explore the healthcare needs of women attending consultant-led breast cancer review clinics from their own perspectives, how these healthcare needs were being met, and healthcare professionals' perceptions of ways in which the service could be delivered more efficiently and effectively. BACKGROUND: The value of routine medical follow-up both in terms of detection of recurrence and patient satisfaction has been questioned. However traditional, where routine follow-up continues, there are rising numbers of women with breast cancer attending review clinics. METHODS: A qualitative approach was adopted, using non-participant observation during seven outpatient oncology/surgical breast review sessions. Interviews were carried out in 2005 with a convenience sample of 21 women clinic attenders, two outpatient nurses, three breast care nurses, four oncologists, three surgeons and an outpatient sister. FINDINGS: Although women saw themselves as having returned to a precancer state, they still had fears of recurrence and a need for reassurance. This need was generally met through the review clinic but many psychosocial needs were unaddressed. However, nurses seemed to be under-used as a potential source of support. Medical and nursing staff perceived that women needed to be reviewed but acknowledged that appropriately prepared nurses could deliver a more holistic and efficient service. CONCLUSION: The number of women with breast cancer requiring ongoing review is likely to increase, but the current review service is not meeting all their needs. A nurse-led follow-up service could be an attractive alternative to routine medical follow-up.     

Care of women with breast cancer on a surgical ward: nurses' opinions of the need for support for women,relatives and themselves

BACKGROUND: In Sweden women with newly diagnosed breast cancer are admitted to surgical wards in order to undergo surgery and receive postoperative care. On these wards, nursing staff take care of women both with newly diagnosed breast cancer and those with cancer in advanced stages. Nurses have to meet the varying needs of patients and their relatives. AIM: To describe nurses' opinions of the need for care and support for women and their relatives in connection with surgery for breast cancer, as well as their own need for support on a surgical ward. METHODS: Thirty-one nurses from a surgical ward participated in semi-structured interviews. The interviews were tape-recorded and transcribed verbatim. Thereafter a step-by-step, qualitative content analysis was carried out. RESULTS: The nurses described the need to talk and receive information as being the most important among women and their relatives, as well as among themselves. Only a few nurses mentioned the need for physical care among the women. Contact with relatives was described as being almost nonexistent. There was a discrepancy between what nurses described as important needs and how these needs were provided for. CONCLUSION: This study shows that what the nurses described as being the most important needs, and the way how these needs were provided for, was more often seen from a theoretical point of view with few examples of self-experienced situations in the daily care. Needs among women and their relatives seemed to be not fully known to nurses and therefore, possibly, were not met. Nurses themselves had a pronounced need for support, which was sometimes unsatisfactorily met.     

Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients

The present study examined the information needs of family caregivers of terminally ill cancer patients. Data were obtained by a structured interview from 66 Japanese caregivers of cancer patients institutionalized in a palliative care unit. Needs for disease-related information (the disease, treatment and prognosis) and care-related information (the care for the patient and family members) were investigated, and demographic and situational characteristics related to individual information needs were assessed. More than 60% of family caregivers wanted disease-related information, and approximately half of these wanted patient and family care-related information. These information needs had significant correlations with the family caregiver's age and with such patient-dependent situational variables as time since diagnosis, care site before enrolling in a palliative care unit, and presence or absence of other family caregivers. The results may help health care professionals to better inform terminally ill cancer patients and their family caregivers.     

Assessing the support needs of women with early breast cancer in Australia

The purpose of the current study was to access the degree to which the support needs of women with a newly diagnosed, early invasive, primary breast cancer and their families are being met. A random sample of 544 women diagnosed with early breast cancer was recruited to participate in a telephone survey via state and territory cancer registries. Sixteen percent of women reported not receiving enough support during their diagnosis and treatment, and only 65% of these women reported that their families received enough support. The primary sources of support for women and their families were medical practitioners (eg, surgeons, oncologists, and general practitioner) with very few women or family members utilizing mental health professionals. Given the importance of adequate support when being diagnosed and treated for breast cancer, urgent attention needs to be paid to training medical professionals in providing appropriate support and referrals for their patients.     

Quality of life in women with breast cancer: a review of the literature and implications for nursing practice

This article discusses the gap between an ever-increasing interest in research on the quality of life in patients with breast cancer and the lack of impact this research has had in the actual care of these women. A critical review of the literature is used to answer the question of how much can be accepted as established knowledge despite the often methodologically weak studies and contradictory results. Deficiency in research studies is no rationale for not improving nursing care in areas wherein there is an expressed need for support and assistance. Nurses are in contact with patients who have breast cancer at all stages of the disease and treatment, because they meet the women in the hospital, at the outpatient clinic, and in their homes. They play an important role in meeting the needs of these women. Ways of improving nursing practice at the different stages of the illness, from the pretreatment phase to posttreatment follow-up assessment, are discussed, and concrete suggestions made. This article addresses the women's need both for adequate information and for social and emotional support.     

Information needs and information-seeking behaviors of men with prostate cancer and their partners: a review of the literature

A critical review of the literature was carried out in the United Kingdom to identify the information needs and information-seeking behaviors of men with prostate cancer and their partners. Relevant papers published between 1990 and 2000 were reviewed and despite having several methodologic limitations, a number of conclusions can still be drawn from this review. First, men with prostate cancer have distinct information needs and information-seeking behaviors throughout their cancer journeys. Although there is considerable variation in the amount and type of information that men require, the majority of men with prostate cancer are satisfied with the information they receive. Second, although partners of men with prostate cancer have needs for information, these needs are often unmet. Partners undergo an information-seeking pattern that is comparable with, if not more active than, patients' information-seeking behaviors. These findings have a number of implications for cancer nursing practice and research, which are discussed in the article.     

Family conferences: a method to diminish transfer anxiety.

Because family members have an impact on patient recovery, failure to address their needs may hinder patient recovery. One such need often expressed by family members of acutely ill patients is that of dealing with anxiety generated by the hospital setting. Families may experience anxiety at any time during the hospital stay, but the literature suggests the time of transfer from the high technologic environment of the intensive care unit (ICU) to a general care unit is crucial. Although the nursing literature contains much information on needs expressed by family members at this time, there is a dearth of information about meeting these needs. For this reason, a study was designed to test one nursing intervention used to diminish the anxiety level of family members of patients experiencing transfer from an ICU to a general care unit--the pretransfer care conference.     

Perceived importance of evidence-based psychosocial clinical guidelines for Hong Kong Chinese women with breast cancer: opinions of patients and health care providers

Aim  The aim of this study was to assess Chinese breast cancer patients’ and health care providers’ (HCPs) perceptions of psychosocial clinical guidelines developed by the Australian National Health and Medical Research Council’s National Breast Cancer Centre. Materials and methods  A convenience sample of Hong Kong Chinese women diagnosed with breast cancer was recruited. In addition, all surgeons and clinical/medical oncologists registered with the Hong Kong Medical Council were invited to complete a mailed survey. Both women and HCPs were asked to rate the importance of the 55 psychosocial clinical guideline items. HCPs also rated the feasibility of implementing each item in their practice. Overall, 344 of 362 (95%) women completed the face-to-face interview. Of 490 eligible HCPs, 75 (15%) completed the mailed survey. Results  At least 50% of the women rated 16 of the 55 psychosocial issues as an essential part of psychosocial care in clinical practice. The top ten ranked items rated essential by patients addressed disease and treatment information provision and question opportunity. HCPs also placed high priority on the scope and opportunities for information giving. Emotional care was intermediately valued. Practical issues and providing social support were rated by both patients and HCPs as the least important aspect of psychosocial care in clinical practice. Fewer than half of the HCPs rated any psychosocial item as feasible to implement in their practice. Conclusions  Chinese women value information provision and question opportunities, highlighting the need of HCPs to address these issues. Interventions that facilitate HCP’s provision of psychosocial support in breast cancer should be set as a high priority.     

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.