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.     

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.     

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.     

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.     

Informational needs of women with a recent diagnosis of breast cancer: development and initial testing of a tool

This study developed and tested the Toronto Informational Needs Questionnaire-Breast Cancer (TINQ-BC), a questionnaire designed to identify the information which women with a recent diagnosis of breast cancer need to deal with their illness. The 73-item questionnaire had content validity based on findings in the literature and opinions of expert oncology nurses. It was administered to 114 women with a recent diagnosis of breast cancer during chemotherapy (n=39), radiation therapy (n=40) or surgery (n=35). Item analysis determined that 51 items in five subscales should be retained in the questionnaire. The subscales, labeled Disease, Investigative Tests, Treatments, Physical, and Psychosocial had good internal consistency reliabilities with Cronbach's alphas of 0.81 to 0.93. Informational needs of women were high with mean scores over 200 in a possible range of 51-255. Informational needs were greatest in either the Disease or Treatments subscales. Marital status, level of education, and level of income were not related to level of informational need. Younger women had a greater need for information than older women (r=-0.35, P=0.003). The results suggest that information is important to help women with breast cancer manage their illness. Nurses should give women an opportunity to ask questions and be prepared to give accurate information.     

Wives of men with prostate cancer postbrachytherapy: perceived information needs and degree of being met

The purpose of this study was to identify and evaluate information needs of wives of men diagnosed with prostate cancer postbrachytherapy and to measure the extent to which the needs are met. The study took place at the National Cancer Institute Comprehensive Cancer Center, and 65 wives of men with prostate cancer were recruited. Wives completed the Family Inventory of Needs-Wives in recovery room on day 1 postprocedure and the demographic data form. Information needs and perceived degree of these needs being met were identified. All needs were identified as important with varying degrees of these needs being met. One item was not rated as being unmet, whereas 4 items had scores of at least 30% for being unmet. Likelihood estimates identified needs with P value less than .05 in relation to educational level of wife. A wife's need for information is prompted by her spouse's illness. This supports the findings of earlier research. A multitude of information needs exist for wives, and the degree of these needs being met varies. An assessment of needs and degree of these needs being met can guide nurses in tailoring education. Direction on approaching information needs may be needed to decrease barriers to communication and foster quality care. Employing a multimodality approach to education, reassessing needs, and encouraging questions are essential.     

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     

Concordance between nurses' perception of their ability to provide spiritual care and the identified spiritual needs of hospitalized patients: A cross‐sectional observational study

Spiritual care is essential to the well‐being of patients, and nurses provide spiritual care as a fundamental part of nursing practice. In this study, we investigated the spiritual care needs of hospitalized patients to determine whether the perceived knowledge of nurses corresponded with these spiritual care needs. A cross‐sectional study was conducted on 1351 hospitalized patients and 200 registered nurses recruited from a medical center in central Taiwan. A questionnaire, including the 21–item Spiritual Care Needs Inventory (patient and nurse version) and basic demographic information, was distributed to eligible participants. The top three items of the spiritual care needs expressed by the hospitalized patients were respect for privacy and dignity, showing concern, and guidance in gaining a sense of hope in life; the percentages of nurses not knowing how to provide these spiritual care needs were 0%, 1%, and 15%, respectively. The spiritual care needs of patients showed a significant relationship with the knowledge of nurses, suggesting that the perceived knowledge of the nurses generally corresponded with the spiritual care items that the patients required most.     

The role of the breast care nurse during treatment for early breast cancer: the patient's perspective

INTRODUCTION: Women who are diagnosed with breast cancer require the support of a range of people during their treatment. Although the role of the breast care nurse in providing support has recently been investigated in several Australian studies the patients' perspective on the role of the breast care nurse in Australian hospitals has not previously been described in detail. The aim of this paper is to explore patients' perspectives on the role of the breast care nurse. METHODS: In-depth interviews were conducted with 18 women who had completed treatment for early breast cancer. The women were asked to describe their experiences from the time of diagnosis through to treatment completion. Thematic analysis was used to analyse the data. FINDINGS: Breast cancer patients repeatedly emphasised the importance of the role of their breast care nurses throughout their experience of breast cancer. The support that breast care nurses provided incorporated the following components: communication, rapport and an awareness of the women's needs, availability, reassurance and practical information. CONCLUSION: This study provides an understanding of women's perspectives on the role of breast care nurses and confirms that breast care nurses play an important support role during the experience of early breast cancer. Oncology clinics should focus on ensuring that all women who are diagnosed with breast cancer have adequate access to the support that breast care nurses are able to provide.     

Supportive care for women with breast cancer: Australian nurses' perspective

Abstract A research project was undertaken to describe how the support needs of women who have had treatment for breast cancer were being met in New South Wales, Australia. Data were collected from both the women and the nurses who cared for them. The findings from the first part of the study examined the nurses' perceptions of the women's needs and how they as health professionals, fulfilled these needs. Analysis was both qualitative and quantitative. Seventy-eight nurses responded to a questionnaire and 15 were interviewed. The findings indicated that the nurses perceived information on disease process and physical aspects of the disease as essential to supporting the women with breast cancer. While they saw providing emotional support to the women as important the nurses themselves often lacked the time and skills to provide it.     

The educational needs of non-specialist breast care nurses

AIMS: To provide an indicative occupational profile and identify the educational needs of non-specialist nurses working with breast cancer patients. DESIGN: A postal questionnaire survey, using a modified, but psychometrically validated, training needs analysis instrument. SETTING: The acute and community sectors of three large trusts. PARTICIPANTS: 119 general nurses working with breast cancer patients. FINDINGS: Significant educational needs were identified for all 30 items of the questionnaire, thereby indicating that participants had both general and cancer-specific training needs. However, 13 of the 14 cancer-related items were among the top 19 training needs, suggesting that these should be a priority focus for targeted educational programmes. No differences were found between acute and community nurses, although D grade (newly qualified) nurses had significantly greater educational needs than E grade nurses (with around 2 years' experience post-qualifying). The indicative occupational profile suggested that the most important tasks were perceived to be communication/team-work, self-management, awareness of special psycho-social problems, knowledge of specific clinical issues, and management of the care package; the least relevant tasks were seen to be specific health promotion activities, supervision, using technical equipment and research/audit. CONCLUSION: This sample of general nurses working with breast cancer patients reported both general and specific educational needs. The information yielded by the current survey could be used to inform continuing educational development for this group, and in this way, could inform the content and mode of delivery of its provision. Continuing professional development (CPD) courses which are based on empirical studies of workforce educational needs could rationalise resources and ultimately enhance patient care. The indicative occupational profile could be used as a competency indicator and might also inform CPD provision.     

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.     

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.     

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.     

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.     

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.     

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.     

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.