Qualitative assessment of information and decision support needs for managing menopausal symptoms after breast cancer.

PURPOSE: For breast cancer (BrCa) survivors, premature menopause can result from conventional cancer treatment. Due to limited treatment options, survivors often turn to complementary therapies (CTs), but struggle to make informed decisions. In this study, we identified BrCa survivors' CT and general information and decision-making needs related to menopausal symptoms. METHODS: The needs assessment was informed by interpretive descriptive methodology. Focus groups with survivors (n = 22) and interviews with conventional (n = 12) and CT (n = 5) healthcare professionals (HCPs) were conducted at two Canadian urban cancer centers. Thematic, inductive analysis was conducted on the data. RESULTS: Menopausal symptoms have significant negative impact on BrCa survivors. Close to 70 % of the sample were currently using CTs, including mind-body therapies (45.5 %), natural health products (NHPs) and dietary therapies (31.8 %), and lifestyle interventions (36.4 %). However, BrCa survivors reported inadequate access to information on the safety and efficacy of CT options. Survivors also struggled in their efforts to discuss CT with HCPs, who had limited time and information to support women in their CT decisions. Concise and credible information about CTs was required by BrCa survivors to support them in making informed and safe decisions about using CTs for menopausal symptom management. CONCLUSIONS: High quality research is needed on the efficacy and safety of CTs in managing menopausal symptoms following BrCa treatment. Decision support strategies, such as patient decision aids (DAs), may help synthesize and translate evidence on CTs and promote shared decision-making between BrCa survivors and HCPs about the role of CTs in coping with menopause following cancer treatment.

The Complementary Medicine Education and Outcomes (CAMEO) program: a foundation for patient and health professional education and decision support programs.

OBJECTIVE: This paper describes the background, design and evaluation of a theory-informed education and decision support program for cancer patients considering complementary medicine (CM). METHODS: The program was informed by the Shared Decision Making theory, the Ottawa Decision Support Framework and the Supportive Care Framework. Previous empirical evidence and baseline research were used to identify patients' and health professionals' (HPs) information and decision support needs related to CM. RESULTS: To address the continuum of CM needs, a variety of education and decision support interventions were developed, including basic CM information and resources for patients and HPs, a group education program and one-on-one decision support coaching for patients, and an on-line education module for HPs. Evaluation of the program and individual interventions is underway. CONCLUSIONS: This education and decision support program addresses a significant gap in care and offers an evidence-informed framework in which to translate CM evidence to conventional care settings and promote communication about CM. PRACTICE IMPLICATIONS: Evidence-informed CM education and decision support interventions are needed to shift the culture around CM within conventional care settings and promote open communication that will lead to CM therapies being safely integrated into care.

Using mixed methods for evaluating an integrative approach to cancer care: a case study.

OBJECTIVE: To evaluate the impact of participating in an integrative cancer care program at the Centre for Integrated Healing in Vancouver, British Columbia, on patients' lifestyle, quality of life, and overall well-being. STUDY DESIGN: A mixed-methods case study with a pre- and posttest design. No control group was utilized. METHODS: All new patients starting at the Centre for Integrated Healing between May and September of 2004 were invited to join the study. Forty-six of 77 new patients agreed to participate. Quantitative data measuring quality of life, social support, anxiety and depression, locus of control, and hope were assessed at baseline (pre-program start) and at 6 weeks and 5 months from the start of the program. Qualitative data in the form of focus groups and interviews were collected midway through the follow-up period to further explore program impacts. RESULTS: No statistically significant improvements or declines were noted on the quantitative measures between baseline and the 5-month follow-up point. The qualitative findings revealed a theme of patients' active engagement in their cancer care involving empowered decision making and creating personal change. Facilitators of active patient engagement in their own care from the integrative program included healing partnerships with practitioners, information and resources, managing the integration of complementary and conventional therapies, emotional support, and a sense of hope. DISCUSSION: This case study was a first attempt at documenting the impact of an integrative cancer care program at the Centre for Integrated Healing. Study limitations included a small sample size, which limited power to detect quantitative changes on the questionnaires and a lack of a control group. Qualitative findings indicated that patients found value in the "person-oriented" holistic approach to care, which encouraged patients to take an active role in decision making and self-care. The use of a mixed-methods research design proved to be an effective approach to not only evaluating outcomes but also examining process issues of the experience. Additional research is greatly needed to better understand potential impacts of integrative approaches to cancer care.

Evaluating supportive cancer care: are we missing an opportunity?

INTRODUCTION: Cancer care can be described as a system or complex network of interventions delivered at various times and places with different intentions. CANCER CARE AS A SYSTEM: Cancer care can include medical treatments, psychosocial care, complementary and alternative medicine, self-care, as well as the process of healing and the context in which care is delivered. EVALUATING CANCER CARE: Whereas evaluating individual cancer treatments can be difficult, evaluating cancer care is even more challenging and requires a research framework that relies on methodologies capable of addressing its holistic, individualized, and complex nature. IN SUMMARY: We suggest that research frameworks focused on studying complex or whole systems are a promising evaluation approach and an opportunity for further exploration.

Bridging the gap in population health for rural and Aboriginal communities: a needs assessment of public health training for rural primary care physicians.

INTRODUCTION: The literature identifies significant inequalities in the health status of rural and Aboriginal populations, compared with the general population. Providing rural primary care physicians with public health skills could help address this issue since the patterns of mortality and morbidity suggest that prevention and health promotion play an important role. However, we were unable to identify any community needs assessment for such professionals with dual skills that had been performed in Canada. METHODS: We conducted key informant interviews and focus groups in 3 rural and Aboriginal communities in British Columbia (chosen through purposive sampling). We analyzed transcripts following standard qualitative iterative methodologies to extract themes and for discussing content. RESULTS: There was broad support for a program to train primary care physicians in public health. The characteristics identified as necessary in such a physician included a long-term commitment to the community with partnership building, advocacy, communication and cultural sensitivity skills. The communities we studied identified some priority challenges, most notably that the current remuneration structure does not support physicians engaging in public health or research. CONCLUSION: There is great potential and support for the training of rural primary care practitioners in public health to improve population health and engage communities in this process.

Sun-related behavior after a diagnosis of cutaneous malignant melanoma.

Cutaneous malignant melanoma is a significant public health problem in Western countries, and the probability that patients with one melanoma will develop a second one is high. This study is an attempt to assess and understand sun-related behavior in patients subsequent to a melanoma diagnosis. We recruited 35 melanoma patients diagnosed in 2001 or 2002, who resided in the Greater Vancouver Regional District of British Columbia, Canada, and 35 controls frequency matched by broad age-group, sex, ethnicity, and area of residence to patients. All participants were interviewed over the telephone in the autumn of 2003 to ascertain their outdoor activities for the previous summer months (June-August) of 2003, along with their clothing preferences, sunscreen use, sunburn frequency, and knowledge and attitudes regarding sun exposure and tanning. Patients were less involved in outdoor recreational activities than controls (mean monthly hours 23.0 vs. 31.0, P=0.023). In addition, patients protected themselves from sun exposure using clothing and sunscreen more often than controls. However, the data also revealed that patients still engaged in outdoor activities to a substantial degree, often without sun protection. Furthermore, 27% still had a positive or neutral attitude toward tanning, even after melanoma diagnosis. The continuing presence of unprotected episodes of summer sun exposure in patients with melanoma, coupled with sunburn prevalence similar to normal controls, suggests that better education and behavior modification programs are needed for patients with melanoma. The results may indicate the need for more emphasis on post-treatment counseling by physicians.

The influence of significant others in complementary and alternative medicine decisions by cancer patients.

Individuals living with cancer are faced with numerous treatment decisions that encompass both conventional therapies and complementary and alternative medicine (CAM). Although a beginning body of research has explored the CAM decision-making process by cancer patients, the social context of these treatment decisions has been largely ignored. As a part of a larger grounded theory research project exploring CAM decision-making processes of cancer patients living in British Columbia, Canada, the purpose of this secondary inquiry was to explore how significant others were involved in patients' decisions related to CAM. In total, 61 patients with early and advanced-stage breast and prostate cancer and 31 significant others participated in semi-structured interviews. Using constant comparative analysis, four main types of decisional involvement by significant others were identified: creating a safe place for the patient to make a decision, "becoming a team": collaborative decision-making, moving the patient towards a decision, and making the decision for the patient. Significant others were often found to engage in more than one type of decision involvement as a consequence of several key factors. Within the types of decisional involvement, nine distinct roles in the CAM decision-making process were described by the significant others. The findings of this inquiry extend previous research by highlighting the importance of significant others in cancer patients' CAM decisions and challenge past conceptualizations of autonomy in treatment decision making.

Evaluating a yogic breathing and meditation intervention for individuals living with HIV/AIDS.

PURPOSE: To assess the effectiveness of a group program aimed at improving well-being among individuals living with HIV/AIDS. METHODS: A randomized controlled trial was used to evaluate a residential program designed to teach breathing, movement, and meditation techniques. Sixty-two participants were recruited from community HIV/AIDS organizations. Fifteen withdrawals from the study left 47 study participants. Standardized measures used were the Mental Health Index (MHI), the MOS-HIV Health Survey (MOS), and the Daily Stress Inventory (DSI), along with qualitative interviews. RESULTS: A repeated-measures analysis of variance indicated positive changes in well-being on the MHI and the MOS, where the effect was primarily seen immediately following the program and disappeared at later data points. The DSI indicated an increase in experience and impact of stress over time for the intervention group postprogram. Alternatively, the qualitative interviews described positive changes in how participants were living their day-to-day lives. CONCLUSION: In order to capture the outcomes of this program properly, both qualitative and quantitative measures are needed.