From the conventional to the alternative: exploring patients' pathways of cancer treatment and care.

BACKGROUND: Complementary and alternative medicine (CAM) use is widespread and on the increase among cancer patients. Most research to date has involved a cross-sectional snapshot of CAM use rather than an exploration into the longitudinal, nonlinear treatment trajectories that cancer patients develop. Our aim is to explore and describe different treatment and decision-making pathways that individuals develop after receipt of a diagnosis of either breast, colorectal, or prostate cancer. METHODS: The study was part of a larger mixed-methods pilot project to explore the feasibility of conducting a five-year international study to assess cancer patients' treatment pathways, including health care use and the perceived impact of different patterns of use on health outcomes over the course of one year. The results presented in this paper are based on the analysis of personal interviews that were conducted over the course of 12 months with 30 participants. RESULTS: Five pathways emerged from the data: passive conventional, self-directed conventional, cautious integrative, aggressive integrative, and aggressive alternative. Factors that shaped each pathway included health beliefs, decision-making role, illness characteristics, and the patient-practitioner relationship. CONCLUSIONS: The results of this examination of the longitudinal treatment and decision-making trajectory provide important information to support health care professionals in their quest for individualized, targeted support at each stage of the patient pathway.

The Living Well Lab: a community-based HIV/AIDS research initiative.

BACKGROUND: Complementary and Alternative Medicine (CAM) is becoming a pillar in the rehabilitative efforts for many living with HIV/AIDS. A community-based research program called the Living Well Lab (LWL) was established in 2007, operating out of Friends For Life (FFL), a non-profit wellness center in Vancouver, Canada offering free CAM therapies to people living with HIV/AIDS. Therapies range from naturopathy to yoga. The LWL partnered with academic and community organizations to evaluate CAM use and changes in health and quality of life outcomes of FFL's HIV+ members. METHODS: A longitudinal, combined methods approach assessed the health- and quality-of-life-related outcomes and experiences of CAM users. Participants completed outcome packages (5 time points) over 18 months, which focused on changes in physical and emotional states, satisfaction with services and social support. Interviews were conducted at baseline, 9- and 18-month time points. Quantitative analyses were descriptive while content analysis and thematic coding were used in the qualitative analysis. RESULTS: Two hundred and seven members enrolled in the LWL. Quantitative data demonstrated improvement in mental and physical wellbeing, social support and patient satisfaction specifically: SF-12, Arizona Integrative Outcomes Scale and three visual analog scales (stress, pain and energy). Participants felt several factors contributed to these changes such as managing anxiety, accepting their illness, learning to relax, an increased capacity for self-care and social support. CONCLUSIONS: CAM use may be associated with changes to physical, social and mental wellbeing. Issues throughout the study provided important lessons for future research.

The healing experience-how can we capture it?

BACKGROUND: The Integrative Medicine (I-MED) Index, designed to be a universal instrument to assess the 5 levels of healing (physical, energetic, emotional, subconscious, spiritual) among individuals who use complementary therapies, is based on the hypothesis of healing (HH), which considers healing as a dynamic process towards wholeness generally following the same steps. When we pilot-tested the instrument, it became clear that the way participants experience healing in their lives was not as the HH suggested. This led us to ask how patients experience healing and what outcomes they identify as key to their journey. METHODS: In-depth, semistructured interviews were conducted with 35 individuals with previous healing experiences at 2 wellness centers in Vancouver, BC. Qualitative content analysis and thematic coding were used to analyze the data. ANALYSIS AND RESULTS: Four themes emerged from participants' stories; they suggested that healing is (1) a personal and subjective experience, (2) a return to wholeness, (3) self-directed and requiring positive intention and (4) experienced in varying degrees. Symptom resolution, goal attainment, changes in social support, mental outlook, and the subtle but significant changes like engaging in life differently were important healing outcomes. Contrary to the assumptions of the HH, healing is an individualized process that does not follow a uniform pattern. CONCLUSIONS: A lack of consensus on the key concepts of healing has hindered efforts to evaluate the effects of complementary therapies and outcome. The results from this study provide the basis for an instrument to assess individuals' healing experiences in a more dynamic manner.

Identifying the barriers to conducting outcomes research in integrative health care clinic settings--a qualitative study.

BACKGROUND: Integrative health care (IHC) is an interdisciplinary blending of conventional medicine and complementary and alternative medicine (CAM) with the purpose of enhancing patients' health. In 2006, we designed a study to assess outcomes that are relevant to people using such care. However, we faced major challenges in conducting this study and hypothesized that this might be due to the lack of a research climate in these clinics. To investigate these challenges, we initiated a further study in 2008, to explore the reasons why IHC clinics are not conducting outcomes research and to identify strategies for conducting successful in-house outcomes research programs. The results of the latter study are reported here. METHODS: A total of 25 qualitative interviews were conducted with key participants from 19 IHC clinics across Canada. Basic content analysis was used to identify key themes from the transcribed interviews. RESULTS: Barriers identified by participants fell into four categories: organizational culture, organizational resources, organizational environment and logistical challenges. Cultural challenges relate to the philosophy of IHC, organizational leadership and practitioner attitudes and beliefs. Participants also identified significant issues relating to their organization's lack of resources such as funding, compensation, infrastructure and partnerships/linkages. Environmental challenges such as the nature of a clinic's patient population and logistical issues such as the actual implementation of a research program and the applicability of research data also posed challenges to the conduct of research. Embedded research leadership, integration of personal and professional values about research, alignment of research activities and clinical workflow processes are some of the factors identified by participants that support IHC clinics' ability to conduct outcomes research. CONCLUSIONS: Assessing and enhancing the broader evaluation culture of IHC clinics prior to implementing outcomes research may be a critical step towards ensuring productive and cost-effective research programs. However, as IHC clinics are often complex systems, a whole systems approach to research should be used taking into account the multidimensional and complex nature of such treatment systems so that the results are useful and reflect real life.

Assessing the role of evidence in patients' evaluation of complementary therapies: a quality study.

BACKGROUND: Making the decision to use complementary and alternative medicine (CAM) for cancer treatment is difficult in light of the limited available evidence for these treatments. It is unclear how patients use evidence to make these decisions. OBJECTIVES: (1) Describe the type of information about CAM that cancer patients use in their decision making; (2) understand why certain types of information about CAM are accepted as evidence by cancer patients; and (3) explore the role of scientific evidence in treatment decision making. METHODS: A qualitative study design using in-depth semistructured interviews with cancer patients attending 4 conventional and integrative health care institutions in Alberta and British Columbia, Canada, was used. RESULTS: Twenty-seven patients were interviewed. Patients sought CAM information from a range of sources, including the Internet, health care providers, friends, relatives, and newspapers. Many expressed frustration about the overwhelming amount of available information and found it difficult to identify reliable information. Information was described as reliable if it supported them in arriving at a decision about CAM. Types of information participants identified included anecdotes, expert opinion, gut feeling, popular literature, scientific evidence, testimonials, advertising and trial and error. Profound differences were found between new CAM users, experienced CAM users, and users with late-stage cancer in type of information sought, the role of scientific evidence in decision making, and overall information needs. CONCLUSION: Although this was a relatively small qualitative study, the results suggest that (1) many patients do not value scientific evidence as highly as conventional providers and (2) it is important for clinicians and other information providers to be aware of the different types of information that patients seek out and access when making choices and decisions regarding CAM treatments and why they seek out these sources.

The process of whole person healing: "unstuckness" and beyond.

OBJECTIVE: The purpose of the present study was to fully explore the descriptions of patients' experiences of change after receipt of whole systems of complementary and alternative medicine (CAM) treatment. The aim was to develop an understanding of "unstuckness," including characterization of states, processes, and modifying factors. DESIGN: This was a secondary descriptive qualitative analysis, using techniques borrowed from phenomenology and grounded theory. SETTING/LOCATION: Three existent datasets collected at two different universities in the United States and Canada were used in the secondary analysis. PARTICIPANTS: Patients with chronic illnesses (including cancer and multiple nonmalignant conditions) who were treated with different packages of care were interviewed for the primary three studies (n = 76 with over 150 interview sessions). Complete data sets from these participants were used in this secondary analysis. OUTCOME MEASURES/DATA COLLECTION TECHNIQUES: Original transcripts were coded asking specific research questions about the experience of change subsequent to whole systems treatments. RESULTS: Data clearly indicated experiential differences between stuckness, unsticking, and unstuckness. Descriptors and characteristics of each state were identified, as was an initial grounded theory of change or transformation that occurs as an outcome of whole medical systems of CAM. CONCLUSIONS: The results provide preliminary conceptualizations and descriptions of the impact that CAM whole systems interventions may have on the individual' s life courses. This constitutes a first step in the identification, measurement, and evaluation of whole systems outcomes in a clinical setting. The emerging conceptualization of the process from stuckness to transformation may also provide a link between clinical research and systems science theory.

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.

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.

Integrative health care: how can we determine whether patients benefit?

OBJECTIVE: Evaluation of integrative health care (IHC) models is becoming increasingly important. One of the areas that requires further attention is the development of an appropriate set of outcome measures. The purpose of this study was: (1) to identify how cancer patients phrase and frame the beneficial outcomes they experienced from IHC, and (2) to develop recommendations for an appropriate outcome measures package for evaluation of IHC. DESIGN: This study involved two different parts: (1) a secondary analysis of qualitative data consisting of transcripts from 42 personal interviews and three focus groups from previous studies related to IHC use by cancer patients; and (2) a content analysis of goal-setting data collected from patients attending an IHC clinic to categorize the type and range of their treatment goals. RESULTS: Six types of benefits were identified: physical well-being, change in physiological indicators, improved emotional well-being, personal transformation, feeling connected, global state of well-being, and cure. Types of goals identified by patients confirmed these benefits and include: to improve state of being, to be cancer free, to have more energy, more effective pain management, and improved quality of life. CONCLUSIONS: A patient's perspective is crucial in understanding the process and outcomes of intentional selfhealing. Assessing self-identified goals suggests the need for patient empowerment through participation in outcome evaluation. We present recommendations for an appropriate outcomes package that is relevant, practical, and based on patient experiences.

Working towards a model of integrative health care: critical elements for an effective team.

OBJECTIVE: The objective of this study was to assess what factors the Tzu Chi Institute (TCI) practitioners identified as supports and barriers to providing care within an integrative health care setting. DESIGN: Qualitative data were collected by means of in-depth, semi-structured interviews with 16 practitioners who worked at a comprehensive integrative care clinic in Vancouver, Canada over 5 years. RESULTS: Practitioners identified four elements critical to forming and sustaining an effective integrative care team: (1) effective communication tools, (2) personal attributes (3) satisfactory compensation, and (4) a supportive organizational structure. CONCLUSIONS: Because of the influence practitioners have on the outcomes of patients in an integrative care program, attention must be focused not only on creating optimal healing environments for patients but also towards establishing and nurturing optimal working environments for practitioners.

Supporting the transformative process: experiences of cancer patients receiving integrative care.

PURPOSE: The purpose of this study is to describe the essential features of the transformative experience among people living with cancer who are seeking integrative care and to identify factors supporting this process. It is hoped that after establishing the nature and meaning of this change or shift, one will better understand what is most meaningful in terms of providing appropriate care and support to patients seeking integrative care. STUDY DESIGN: An interpretational, qualitative approach guided sampling, data collection, and analysis with 11 individuals. A purposeful sample was drawn from selected integrative care facilities according to sociodemographics and type of cancer. Due to the complexity of this subject, second interviews were conducted with 5 participants to enhance the richness and validity of the data. RESULTS: The experience of transformation is a dynamic 4-stage process in which participants learned about themselves and became more aware of who they are and how they relate to the world. Participants found that 4 dimensions of integrative medicine played a fundamental role in supporting this process. These dimensions include (1) having access to a range of appropriate therapies to support individual journeys, (2) care that focuses on one's overall well-being, (3) control over cancer management, and (4) developing healing relationships with care providers. CONCLUSION: Although practitioners may not be able to create transformative experiences for patients, they may be able to establish and maintain conditions that support this process.

Evaluation of the Tzu Chi Institute for Complementary and Alternative Medicine's Integrative Care Program.

OBJECTIVE: There are an increasing number of clinics providing integrative health care using new and innovative delivery models. The purpose of this study was to quantitatively and qualitatively evaluate the Integrative Care Program offered at the Tzu Chi Institute for Complementary and Alternative Medicine, Vancouver, British Columbia, Canada. DESIGN: At enrollment, data are collected on demographics, health history, current health concerns and diagnoses, quality of life/health status (SF-36) and patient satisfaction. The measures are repeated 6 months into the program. Descriptive analysis was used to summarize the data. Focus groups were also included as part of the study design. RESULTS: Patients seeking integrative care are a highly complex population living with numerous comorbid chronic conditions. Although their baseline scores on the SF-36 are lower than Canadian population norms across all subscales, significant improvement occurred from baseline to 6 months. Qualitative data support that patients were pleased with the clinical care they received and aligned with the philosophical underpinnings of the program. DISCUSSION: This is one of the first studies to evaluate integrative health care. Studies like this are needed to develop appropriate methods to assess models of integrative health care delivery.

Complementary therapy use in HIV/AIDS.

OBJECTIVE: To examine the social psychological aspects of complementary therapy use in HIV/AIDS health care and to identify what happens in a person's illness management process when incorporated into their care for HIV-related symptoms. METHODS: Grounded theory research method guided sampling, data collection and analysis with 21 males at various AIDS service organizations. FINDINGS: A grounded theory model Finding a Way to Live was developed. Participants experienced a six-stage process whereby the HIV served as a precondition for a profound self-transformation; a commitment to and rediscovery of the meaning of life. Complementary therapies, referred to as 'tools' by the participants, were cited as an integral part of how people living with HIV found wellness within their illness. The type of therapy, meanings attached to them, intention for and frequency of use corresponded to where individuals were in the six-stage process. As participants began to experience personal growth, the nature of the therapies shifted from those being highly tangible and focusing on the physical self to those facilitating inner awareness, such as meditation. CONCLUSIONS: The process of integration was a complex, ongoing process wherein complementary therapies were an integral part of facilitating learning, self-discovery and ultimately, healing.