Canadian integrative oncology research priorities: results of a consensus-building process.

BACKGROUND: In Canada, many diverse models of integrative oncology care have emerged in response to the growing number of cancer patients who combine complementary therapies with their conventional medical treatments. The increasing interest in integrative oncology emphasizes the need to engage stakeholders and to work toward consensus on research priorities and a collaborative research agenda. The Integrative Canadian Oncology Research Initiative initiated a consensus-building process to meet that need and to develop an action plan that will implement a Canadian research agenda. METHODS: A two-day consensus workshop was held after completion of a Delphi survey and stakeholder interviews. RESULTS: FIVE INTERRELATED PRIORITY RESEARCH AREAS WERE IDENTIFIED AS THE FOUNDATION FOR A CANADIAN RESEARCH AGENDA: EffectivenessSafetyResource and health services utilizationKnowledge translationDeveloping integrative oncology models Research is needed within each priority area from a range of different perspectives (for example, patient, practitioner, health system) and in a way that reflects a continuum of integration from the addition of a single complementary intervention within conventional cancer care to systemic change. Strategies to implement a Canadian integrative oncology research agenda were identified, and working groups are actively developing projects in line with those strategic areas. Of note is the intention to develop a national network for integrative oncology research and knowledge translation. CONCLUSIONS: The identified research priorities reflect the needs and perspectives of a spectrum of integrative oncology stakeholders. Ongoing stakeholder consultation, including engagement from new stakeholders, is needed to ensure appropriate uptake and implementation of a Canadian research agenda.

"Grasping the grey": patient understanding and interpretation of an intermediate allele predictive test result for Huntington disease.

Since the discovery of the genetic mutation underlying Huntington disease (HD) and the development of predictive testing, the genetics of HD has generally been described as straightforward; an individual receives either mutation-positive or negative predictive test results. However, in actuality, the genetics of HD is complex and a small proportion of individuals receive an unusual predictive test result called an intermediate allele (IA). Unlike mutation-positive or negative results, IAs confer uncertain clinical implications. While individuals with an IA will usually not develop HD, there remains an unknown risk for their children and future generations to develop the disorder. The purpose of this study was to explore how individuals understood and interpreted their IA result. Interviews were conducted with 29 individuals who received an IA result and 8 medical genetics service providers. Interviews were analyzed using the constant comparative method and the coding procedures of grounded theory. Many participants had difficulty "Grasping the Grey" (i.e. understanding and interpreting their IA results) and their family experience, beliefs, expectations, and genetic counseling influenced the degree of this struggle. The theoretical model developed informs clinical practice regarding IAs, ensuring that this unique subset of patients received appropriate education, support, and counseling.

Declining conventional cancer treatment and using complementary and alternative medicine: a problem or a challenge?

BACKGROUND: Several studies have shown that a small but significant percentage of cancer patients decline one or more conventional cancer treatments and use complementary and alternative medicine (CAM) instead. OBJECTIVES: Here, drawing on the literature and on our own ongoing research, we describe why cancer patients decide to decline conventional cancer treatments, who those patients are, and the response by physicians to patients who make such decisions. RESULTS: Poor doctor-patient communication, the emotional impact of the cancer diagnosis, perceived severity of conventional treatment side effects, a high need for decision-making control, and strong beliefs in holistic healing appear to affect the decision by patients to decline some or all conventional cancer treatments. Many patients indicate that they value ongoing follow-up care from their oncologists provided that the oncologists respect their beliefs. Patients declining conventional treatments have a strong sense of internal control and prefer to make the final treatment decisions after considering the opinions of their doctors. Few studies have looked at the response by physicians to patients making such a decision. Where research has been done, it found that a tendency by doctors to dichotomize patient decisions as rational or irrational may interfere with the ability of the doctors to respond with sensitivity and understanding. CONCLUSIONS: Declining conventional treatment is not necessarily an indicator of distrust of the medical system, but rather a reflection of many personal factors. Accepting and respecting such decisions may be instrumental in "keeping the door open."

Integrative practices of Canadian oncology health professionals.

OBJECTIVE: Cancer patients are increasingly known to use complementary medicine (CAM) during conventional treatment, but data are limited on how Canadian oncology health professionals attempt to assist patients with their use of cam in the context of conventional cancer care. As part of a larger qualitative study assessing the perceptions of Canadian oncology health professionals regarding integrated breast cancer care, we undertook an exploration of current integrative practices of oncology health professionals. DESIGN: Using an interpretive description research design and a purposive sampling, we conducted a series of in-depth qualitative interviews with various oncology health professionals recruited from provincial cancer agencies, hospitals, integrative clinics, and private practice settings in four Canadian cities: Vancouver, Winnipeg, Montreal, and Halifax. A total of 16 oncology health professionals participated, including medical and radiation oncologists, nurses, and pharmacists. RESULTS: Findings highlighted two main strategies used by oncology health professionals to create a more integrative approach for cancer patients: acting as an integrative care guide, and collaborating with other health professionals. CONCLUSIONS: Although few clear standards of practice or guidance material were in place within their organizational settings, health professionals discussed some integrative roles that they had adopted, depending on interest, knowledge, and skills, in supporting patients with cam decisions. Given that cancer patients report that they want to be able to confer with their conventional health professionals, particularly their oncologists, about their cam use, health professionals who elect to adopt integrative practices are likely offering patients much-welcomed support.

Patient decision-making about complementary and alternative medicine in cancer management: context and process.

OBJECTIVE: In this paper, we set out to describe the personal and social contexts of treatment decisions made by cancer patients concerning complementary and alternative medicine (CAM) and also the process through which cancer patients reach cam decisions throughout the cancer trajectory. METHODS: We selected and reviewed a variety of CAM decision-making models published in the past 10 years within the Canadian health literature. RESULTS: The cam decision-making process is influenced by a variety of sociodemographic, disease-related, psychological, and social factors. We reviewed four main phases of the cam decision-making process: Taking stock of treatment options. Gathering and evaluating CAM information. Making CAM decisions. Revisiting the cam decision. Immediately following diagnosis, cancer patients become interested in taking stock of the full spectrum of conventional and CAM treatment options that may enhance the effectiveness of their treatment and mediate potential side effects. Information about CAM is then gathered from numerous information sources that vary in terms of credibility and scientific legitimacy, and is evaluated. When making a decision regarding CAM options, patients attempt to make sense of the diverse information obtained, while acknowledging their beliefs and values. The CAM decision is often revisited at key milestones, such as the end of conventional treatment and when additional information about disease, prognosis, and treatment is obtained. CONCLUSIONS: The CAM decision-making process is a dynamic and iterative process that is influenced by a complex array of personal and social factors. Oncology health professionals need to be prepared to offer decision support related to CAM throughout the cancer trajectory.

Cervical cancer screening in ethnocultural groups: case studies in women-centered care.

INTRODUCTION: The purpose of this study was to identify and describe critical elements of women-centered care within the context of providing cervical screening to three ethnocultural groups in Canada: Asian, South Asian and First Nations. METHODS: Data for this collective case study included open-ended interviews with purposive samples of women and key informants from each target group. Following thematic analysis, cross-case analysis was completed by comparing and contrasting issues and contextual factors influencing women's and providers' experiences. RESULTS: Cervical screening services for each group were shaped by attention to ethnocultural values, women's desire for thorough explanations, and the importance of a comfortable setting. While participation rates varied across clinics, women were positive about their experiences in obtaining cervical screening. Some women's expectations that they could address a range of health concerns with female health providers at the clinics were stymied by structural barriers that prevented staff from addressing issues beyond those directly related to cervical screening. Cross-case analysis revealed three key elements of women-centered care: respectful and culturally appropriate interactions between women and health providers, the importance of providing acceptable alternatives for women, and the need for comprehensive health services. CONCLUSION: While the establishment of Pap test clinics for ethnocultural groups has the potential to enhance participation in cervical screening, changes in health policy and the structure of health services are required for existing programs to fully implement the elements of women-centered health care identified in this study. Other models of providing health care to women in ethnocultural groups, including the use of clinics staffed by nurse practitioners, should be evaluated.

Falling through the cracks. Women's experiences of ineligibility for genetic testing for risk of breast cancer.

OBJECTIVE: To describe experiences of women seeking information about their risk of hereditary breast cancer who fail to meet strict eligibility criteria for genetic counseling and testing. DESIGN: Qualitative descriptive study. SETTING: Hereditary cancer program in western Canada. PARTICIPANTS: Women who had received notification of their ineligibility for referral for hereditary breast cancer risk assessment (n = 20) and some of their referring physicians (n = 10). Of 28 attempted contacts, five women had moved, one declined the invitation to participate, and two could not be interviewed because of scheduling conflicts. Ten of 20 physicians declined the invitation to participate. METHOD: In-depth, open-ended telephone interviews were conducted. Transcribed interviews were systematically analyzed to identify salient themes. MAIN FINDINGS: Three themes emerged. The first theme, "It's always on your mind," points to the profound concern about breast cancer that underlies women's experiences in seeking genetic testing. The second theme, "A test is a test," reflects women's beliefs that the test was relatively simple and similar to other medical tests in that it would provide a definitive answer. The third theme, "Falling through the cracks," captures the experience of ineligibility. Women reacted with a range of emotional responses and were left frustrated in their search for more specific information about their personal risk for breast cancer. Although women were encouraged to contact their physicians, few did. CONCLUSION: These findings point to the psychological consequences in women who seek genetic testing for risk of breast cancer when they are told they are ineligible and they are not given adequate information and support.

An embedded decisional model of stress and coping: implications for exploring treatment decision making by women with breast cancer.

Treatment decision making by women with breast cancer has been recognized to be an inherently stressful process. However, past decisional theory and research has failed to fully elucidate the personal, transactional, and relational nature of choice behaviour. The purpose of this paper is to explore an embedded decisional model of stress and coping that locates key assumptions of Janis & Mann's (1977) conflict-theory model of decision making within Lazarus & Folkman's (1984) transactional framework. Through combining decisional and stress and coping theories, a model is developed that addresses the theoretical limitations of the conflict-theory model and provides greater specificity within decision-making research. The paper examines the complexity of treatment decision making within the context of the constructs of causal antecedents, primary appraisal, secondary appraisal, coping, and adaptational outcomes. Examples specific to women with breast cancer are provided to illustrate the potential application of the embedded model. The implications of this inclusive and comprehensive decisional theory for future knowledge development and research in the area of treatment decision making are also discussed.

An embedded decisional model of stress and coping: implications for exploring treatment decision making by women with breast cancer.

Treatment decision making by women with breast cancer has been recognized to be an inherently stressful process. However, past decisional theory and research has failed to fully elucidate the personal, transactional and relational nature of choice behaviour. The purpose of this paper is to explore an embedded decisional model of stress and coping that locates key assumptions of Janis and Mann's conflict-theory model (CTM) of decision making within Lazarus and Folkman's transactional framework. Through combining decisional and stress and coping theories, a model is developed that addresses the theoretical limitations of the CTM and provides greater specificity within decision-making research. The paper examines the complexity of treatment decision making within the context of the constructs of causal antecedents, primary appraisal, secondary appraisal, coping and adaptational outcomes. Examples specific to women with breast cancer are provided to illustrate the potential application of the embedded model. The implications of this inclusive and comprehensive decisional theory for future knowledge development and research in the area of treatment decision making are also discussed.

Breast health practices and South Asian women.

Breast cancer is an important women's health issue in all communities. To detect breast cancer early, all women should practise monthly breast self-examination, have regular clinical breast examinations and attend mammography screening at suggested intervals. Participation in these breast health practices is influenced by a wide variety of factors, including how women define health and health practices, priorities in women's lives and their explanations of the causes of diseases such as cancer.

Nursing challenges in cancer pain assessment and management: setting an agenda for the CANO Pain Initiative.

The purpose of this inventory was to determine what oncology nurses perceived to be the challenges and priorities in pain assessment and management in Canada. It was recognised that there are a variety of practices in Canada, and if we are to establish an educational framework, there is a need to know what some of the issues are and what assessment tools are being used. Sixty-six survey questionnaires were sent to centres with an oncology or palliative care focus. Thirty-one surveys were returned with a great deal of information. The findings of this descriptive inventory of cancer pain assessment and management hold several key implications for future directions of the CANO Pain Initiative. The findings provide further support for ongoing efforts to educate and inform health professionals about the nature of cancer pain and associated assessment and management issues. A number of other issues have been identified with this survey which continues to support the efforts of the CANO Pain Initiative in developing educational modules, comprehensive care plans and practical ways to document pain interventions.

South Asian womens' views on the causes of breast cancer: images and explanations.

Using ethnoscience methods, interviews with 50 South Asian women living in Western Canada were conducted and analyzed to explore explanations and images of breast cancer. Embedded in the women's stories of breast cancer were distinctive, often vivid and fear-provoking images of abnormal growth. Explanations about the causes of breast cancer involved five domains of belief. The first domain was of a physical nature and centred on damage to the breast. A second domain of explanations, 'can catch it,' focused on the way this disease could be spread to others. Other women attributed breast cancer to the ways women could 'bring it upon yourself,' often linking a negative lifestyle with the development of cancer. Many women attributed cancer to being 'in the hands of others,' explaining the cancer was caused by careless words, curses or divine power. Finally, breast cancer was seen as something that could be passed down in the family. The taxonomy developed in this study provides a useful framework for understanding the explanations that might underlie women's health-seeking behaviours and for developing culturally suitable counseling strategies.

Beyond convention: describing complementary therapy use by women living with breast cancer.

Using a descriptive survey design, 52 women living with breast cancer were interviewed to explore their use of complementary therapy and the relationships between complementary therapy use and key demographic variables and health beliefs. Sixty-seven percent of the women reported complementary therapy use, with meditation/relaxation therapies, vitamins and spiritual healing being the three most frequently reported treatments. Women using complementary therapies were more likely to have completed post-secondary education than women using only conventional medical treatment (chi 2 = 7.1, P = 0.008). Preferred decisional role was found to be significantly associated with the use of complementary therapies (chi 2 = 11.7, P = 0.003); women using complementary therapies preferred a more active/collaborative role in treatment decisions than women using only conventional medical treatment. No significant associations were found between complementary therapy use and beliefs about cause of cancer, treatments, satisfaction with health care providers, and perceived quality of life. The findings point to the pervasiveness of complementary therapy use by women living with breast cancer and contradict past research which has supported a distinct demographic profile of complementary therapy users and associated belief system.

Beliefs related to breast health practices: the perceptions of South Asian women living in Canada.

Breast cancer is becoming a major concern for many South Asian women. Clinical observations of women from a South Asian community living in Canada revealed an under use of early detection strategies. The purpose of this qualitative ethnoscience study was to examine breast health practices from the perspective of South Asian women to provide a foundation for the development of culturally suitable breast health services for this group. Open-ended interviews were conducted with a convenience sample of 50 South Asian women over the age of 30 who had not been diagnosed with breast cancer. Adequate representation of the main religious groups (i.e. Sikh, Hindu, Muslim and Christian) was ensured through sampling techniques. Analysis of translated interviews involved identification of themes and the development of a taxonomy to represent relationships among emerging cultural themes and domains. Four central domains of beliefs related to breast health practices were identified: beliefs about a woman's calling, beliefs about cancer, beliefs about taking care of your breasts and beliefs about accessing services. These beliefs hold important implications for how health promotion strategies should be structured and offered, In particular, attention must be paid to the language that is used to talk about breast cancer, the importance of the role of the family in women's health decisions and traditions related to using narratives to share information and advice.