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.     

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.     

Effectiveness of CancerGuides a study of an integrative cancer care training program for health professionals

PURPOSE: To determine how CancerGuidesa, an integrative cancer care training program, would affect participants' perception of their professional skills, their mood, use of self care and mind-body modalities, and the acceptance of integrative cancer care at their institutions. STUDY DESIGN: Qualitative and quantitative measures were used during the training program and at 6-month follow-up. A focus group met before and after the training, and individual interviews of focus group participants were done at follow-up. METHODS: The week-long program consisted of lectures that provided information on integrating conventional and complementary therapies into individualized programs of cancer care. Small group sessions used mind-body techniques to allow participants to understand the dilemmas faced by cancer patients. A self-report survey was administered at the training program and at 6-month follow-up. The survey included questions on the personal and professional use of modalities and on participants' sense of how well they met the course objectives. Qualitative questions addressed self-care, changes in clinical practice, and the acceptance of integrative therapies by their institutions. The Profile of Mood States was administered before and after the training. RESULTS: Six months after the training, there was a significant increase in the use and/or recommendation of complementary and alternative medicine modalities in clinical practice and a significant increase in the personal practice of these modalities. Participants' perceived level of skill for all of the course objectives was significantly increased following the training and was maintained at 6-month follow-up. There were significant reductions in the Anger-Hostility and Tension-Anxiety subscale scores of the Profile of Mood States questionnaire. In response to qualitative questions, participants reported positive changes in patient care and in their clinical practices at 6-month follow-up. The subset of participants in the focus group interviews reported similar improvements. Thirty-five percent of those responding at follow-up reported an increase in acceptance of integrative cancer therapies at their institutions, and 77% reported making positive changes in self-care. CONCLUSIONS: Cancer-Guides provided training that allowed participants to enhance personal self-care, to interact more effectively with their patients, and to develop programs of integrative cancer care.     

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:

• Effectiveness
• Safety
• Resource and health services utilization
• Knowledge translation
• Developing 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.     

Ethical issues in integrative oncology

Integrative oncology relates to an emerging dialog between complementary and alternative medicine (CAM) scholars, oncologists, family practitioners, and other health care providers who envision an extended and holistic patient-centered approach to oncology care. The multiple commitments of integrative oncology to a medical humanistic approach and to a strong evidence-based foundation may impose considerable ethical concerns and dilemmas. The authors use narrative ethics to present a case study that exemplifies the ethical challenges confronting physicians and health care providers who wish to provide an integrative approach for their patients. An ethical analysis of the narrative is provided to help clarify the ethical issues and conflicts within it. Finally, a framework that may transform ethical constraints to a communication tool is proposed.     

Recruiting Black/African American men for research on prostate cancer prevention

BACKGROUND: Black/African American men die of prostate cancer at a greater rate relative to other males. During the period from 1992 to 1998, prostate cancer incidence rates in the United States were 234.2 per 100,000 persons among non-Hispanic black males and 144.6 per 100,000 persons among white males. The reasons for these increased rates of prostate cancer among black males are largely unknown, but increased mortality is associated with late detection. The authors conducted a longitudinal study of black men that investigated prostate cancer prevention behaviors within this population. The purpose of the current article is to identify successful recruitment strategies that were reported by participants in this study of prevention behaviors. METHODS: Qualitative research methods were used to elucidate men's thoughts, attitudes, beliefs, and practices regarding prostate cancer prevention behaviors and to identify strategies for attracting black men to research programs and retaining them in these programs. RESULTS: Ethnocentric recruitment strategies that were identified included the development of tailored printed materials; the use of targeted locations; and a personalized, participatory approach for engaging potential participants. We contacted 498 black men and enrolled a cohort of 277 non-Hispanic black males (75% of whom were recruited within a 9-week period) in the current study. CONCLUSIONS: Unlike other studies that reported difficulty in recruiting African American men, the current study did not encounter such difficulties. The authors attribute their success to culturally attractive Afrocentric materials; cultural sensitivity; a caring, professional, personalized ethnic approach; respect; and participatory involvement of the target population. Nonetheless, the authors did encounter barriers, such as lack of physician interest and lack of trust in quality medical care. These barriers must be overcome before black males can be engaged and retained in research studies on prostate cancer prevention.     

Transitional Cancer Care Program from Hospital to Home in the Health Care System of Iran

Objectives: Transitional care program refers to the health care continuity during transferring from one health care setting to another or to home. This is an essential program for cancer patients and reduces the risk of unnecessary hospital admissions as well as the complications of the disease. The aim of this study was to develop a transitional cancer care program from hospital to home in the health care system of Iran. Methods: This study is a health policy and system research. It was conducted in four stages from October 2019 to January 2020. The first stage was a qualitative study. The qualitative data were collected through semi-structured interviews with 24 participants and a focus group with eight experts. In the second stage, a literature review of transitional care models was carried out. The initial version of the transitional cancer care program was developed based on the qualitative results and the literature review in the third stage. The validity and feasibility of the program were assessed using the Delphi study in the fourth stage. Results: Six major categories were extracted from the qualitative results, consisting of “integrated services for the continuity of care”, “holistic care”, “care standardization”, “the use of telemedicine”, “the transparency of rules” and “the care process provision”. Using these results and extracted the three common models of transitional care, the initial program was developed in three phases of pre-discharge, post-discharge, and transitional care with six protocols. The content validity of the program (98.7%) and its feasibility (95.8%) were approved by experts in the Delphi rounds. Conclusions: It is necessary to revise hospitals’ discharge program, and home health care center’s plan for admission and delivering health care services for cancer patients. Also, a pilot program is necessary to find the system advantages and disadvantages.     

The effects of cancer research participation on patient experience: a mixed‐methods analysis

Patient‐reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as ‘very good/excellent’ (OR_adj:1.64, 95%CI: 1.53–1.76, P < 0.001) and to describe positive patient experiences, such as better access to non‐standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research.     

Incorporating complementary and integrative medicine in a comprehensive cancer center

This article provides a model of integrating complementary and integrative medicine into cancer care in a comprehensive conventional cancer center. This model requires a patient-centered approach with attention to patients' concerns and enhanced communication skills. A discussion of patients' psycho-social-spiritual perspectives is a crucial component in this approach. In addition, complementary and integrative medicine practitioners and conventional practitioners' involvement and cooperation in developing this integration process are essential. This process requires tremendous team effort, institutional culture change, trust and open communication between all members of the health care team, and support from institutional leaders.     

Integrative oncology: Addressing the global challenges of cancer prevention and treatment

The increase in cancer incidence and mortality is challenging current cancer care delivery globally, disproportionally affecting low- and middle-income countries (LMICs) when it comes to receiving evidence-based cancer prevention, treatment, and palliative and survivorship care. Patients in LMICs often rely on traditional, complementary, and integrative medicine (TCIM) that is more familiar, less costly, and widely available. However, spheres of influence and tensions between conventional medicine and TCIM can further disrupt efforts in evidence-based cancer care. Integrative oncology provides a framework to research and integrate safe, effective TCIM alongside conventional cancer treatment and can help bridge health care gaps in delivering evidence-informed, patient-centered care. This growing field uses lifestyle modifications, mind and body therapies (eg, acupuncture, massage, meditation, and yoga), and natural products to improve symptom management and quality of life among patients with cancer. On the basis of this review of the global challenges of cancer control and the current status of integrative oncology, the authors recommend: 1) educating and integrating TCIM providers into the cancer control workforce to promote risk reduction and culturally salient healthy life styles; 2) developing and testing TCIM interventions to address cancer symptoms or treatment-related adverse effects (eg, pain, insomnia, fatigue); and 3) disseminating and implementing evidence-based TCIM interventions as part of comprehensive palliative and survivorship care so patients from all cultures can live with or beyond cancer with respect, dignity, and vitality. With conventional medicine and TCIM united under a cohesive framework, integrative oncology may provide citizens of the world with access to safe, effective, evidence-informed, and culturally sensitive cancer care.     

The potential of a person-centered approach in caring for patients with cancer: a perspective from the UCLA center for East-West medicine

BACKGROUND: Evolving patient preferences as well as an expanding evidence base for commonly used complementary and alternative medicine therapies for patients with cancer have led to inroads by integrative medicine into clinical oncology. Traditional Chinese medicine (TCM) has been used in conjunction with conventional biomedicine in the prevention and treatment of cancer in China for several decades. METHODS: The authors, through select review of the existing literature and by drawing on clinical experience, describe a person-centered approach to care of patients with cancer that incorporates TCM concepts and techniques. Two cases are used to illustrate how this approach might address unmet needs and enhance quality of life for patients with cancer. RESULTS: TCM's emphasis on a comprehensive understanding of imbalance in various systems and resultant compromise of homeostatic reserve as well as its ability to treat them with distinctive therapeutic modalities can add unique value to the overall management of the patient with cancer. CONCLUSIONS: TCM can be used adjunctively to improve quality of life and functional status during a patient's struggle with cancer. An approach integrating both medicines that is guided by scientific evidence, safety, and patient preferences has the potential to improve modern oncologic care.     

Nurses’ Perceptions of Prognosis-Related Communication

Introduction: Effective communication is an important aspect in providing health care. Communications optimize the patient-caregiver relationship and improve patient care and family and caregiver welfare. The main objective of this study was to explore nurses’ experience of prognosis-related communication (PRC). Methods: Phenomenological research design was used to do this study. A total of 248 members of the local oncology nursing association were invited to complete this online survey from January 2016 to March 2016. Then, focus groups were held to discuss and improve themes derived from the analysis of online written responses. Five focus groups were performed, each consisting of 6 to 8 participants. No new data were generated by the fifth focus group and data saturation was achieved. NVivo 11 was used to manage data and facilitate the development of themes. Results: The participants were almost female, with a mean nursing experience of 13 years and almost 8 years of working experience in oncology ward. Three themes were extracted following data analysis, namely the importance of collaboration, impact of PRC, and communication of prognostic information. One hundred and fifty nurses (60%) reported that they received no formal training or education about PRC. Conclusion: There is a need to improve the knowledge and attitude of physician toward engaging nurses in the process of PRC.     

Engaging Patients and Caregivers in Patient-Centered Outcomes Research on Advanced Stage Lung Cancer: Insights from Patients,Caregivers, and Providers

Participatory and patient-centered approaches to cancer research have been highlighted as the most appropriate means of engaging patients in the conduct of clinical research. However, there is a paucity of patient-centered outcomes research (PCOR) on lung cancer. Previous studies seeking to define lung cancer treatment success have generally not included patients’ and caregivers’ perceptions and views in treatment decision-making. Additionally, little is known about effective strategies for the engagement of lung cancer patients in PCOR. We sought to gain insights into the perceptions of patients, caregivers, and providers on lung cancer treatment success, as well as on strategies for patient engagement in lung cancer PCOR. Four focus groups were conducted with provider, patient, and caregiver participants from four cancer centers in Nebraska and South Dakota. A total of 36 providers, patients, and caregivers participated in this study. Patients and caregivers confirmed that survival alone should not be the measure of lung cancer treatment success and that definitions of treatment success should emphasize factors such as effective clinical guidance throughout treatment, symptom management, functionality, and quality of life. Clinician participants noted that the definition of treatment success evolved over time and appeared to be linked to patients’ experiences with chemotherapy. Participants identified barriers to and facilitators of research participation and suggested strategies for the recruitment and retention of research participants. Our study indicates that patients can successfully play active and engaged roles in clinical research, ranging from participant to partner. Judging from the enthusiasm of our focus group attendees, patients and caregivers want to participate and be engaged in clinical research.     

Research review of the supportive care needs of spouses of women with breast cancer.

PURPOSE/OBJECTIVES: To conduct an integrative review of the research describing the needs of spouses of women with breast cancer for direction in planning nursing interventions to meet their supportive care needs. DATA SOURCES: Published articles and bibliographies from pertinent articles. DATA SYNTHESIS: A base of knowledge exists regarding the emotional and psychosocial needs of spouses of women with breast cancer. Less is known about their spiritual, practical, and physical needs. Very little research has explored nursing interventions and supportive care needs. CONCLUSIONS: Definite knowledge gaps exist regarding the needs of spouses of women with breast cancer. More research is required to develop and evaluate interventions that focus on these needs. IMPLICATIONS FOR NURSING PRACTICE: A diagnosis of breast cancer is a distressing time for both women and their spouses. Ongoing research and the development of interventions are necessary to help spouses cope with the stress throughout the illness so that they may support their wives.     

Design and Process of Implementation Mobile Application Based Modular Training on Early Detection of Cancers (M-OncoEd) for Primary Care Physicians in India

Background: Early detection of curable cancers is a cost-effective way to address the cancer care burden of low- and middle-income countries and active engagement of primary care physicians using mobile technology can have a significant impact on cancer outcomes in a short time. Aims: To describe the process of mHealth study; Oncology Education and Training for Providers using Mobile Phones which developed a mobile application (M-OncoEd) to educate physicians on approaches to early detection of curable cancers. It also aims to describe how the insight gained through qualitative research by the researchers was used in the design and implementation of the project. Methodology: Qualitative research methods were used in all the phases of the study. Phenomenology was used in the formative phase with three expert meetings, two Focus Group Discussion (FGD) and five In-depth Interviews (IDI), and during the implementation stage with two FGDs, three IDI, and five informal discussions. Observations: The majority of curable cancers are detected at a late stage and poorly managed in India, and active engagement of primary care physicians can have a significant impact on cancer outcomes. There is a lack of knowledge and skills for early detection of cancers among consultants and physicians and this can be attributed to the training gap. M-OncoEd was a need-based well designed engaging learning platform to educate primary care physicians on Breast, Cervical, and Oral Cancer early detection. It was found to be very useful by the beneficiaries and made them more confident for early detection of cancers from the community. Conclusions: This research study could design a need-based, cost-effective mobile-based learning tool for primary care physicians using the expertise and experience of the experts in cancer care using qualitative methods.     

Integration of Chinese medicine into supportive cancer care: a modern role for an ancient tradition.

Recent evidence suggests that many traditional Chinese medical therapies are effective for the supportive care of cancer patients. This is a review of some of the published literature (indexed in Medline) and our own practical experience. It is not intended to be a systematic review, but does provide various levels of evidence which support further research into a developing model of integrative care. The holistic approach of Traditional Chinese Medicine (TCM) may be integrated into conventional Western Medicine to supplement deficiencies in the current biomedical model. The philosophy of TCM proposes novel hypotheses which will support the development of a science-based holistic medicine.     

Taking away the fear: a grounded theory study of cooperative care in the treatment of head and neck cancer

Cooperative care is a relatively new treatment model that seeks to improve quality, conserve resources, and manage chronic conditions by providing patient and carepartner education in a homelike setting. Support from health care professionals is immediately available as patients and carepartners learn the skills needed to manage a disease and its treatment. This study sought to describe the effect of cooperative care on the treatment of head and neck cancer. Grounded theory methodology and focused interviews of 21 participants were used to answer three research questions: (1) Do the patients, carepartners, and providers involved in cooperative care perceive the potential psychosocial and self‐care benefits? (2) How does the cooperative care treatment model affect the achievement of self‐care for patients with surgical treatment of head and neck cancer? (3) What are appropriate theories regarding the benefits of cooperative care in the treatment of head and neck cancer that can be tested with quantitative methods? Results indicate that providers perceived cooperative care as a time‐consuming process that resulted in less anxious, more communicative patients who required fewer post‐discharge resources. Patients and carepartners perceived cooperative care as an experience that took away their fear by providing self‐care education within a caring community. Copyright © 2003 John Wiley & Sons, Ltd.     

Clinicopathological characteristics of surgically resected lung cancer associated with idiopathic pulmonary fibrosis

BACKGROUND AND OBJECTIVES: Idiopathic pulmonary fibrosis (IPF) is well known to be associated with lung cancer. It is important to clarify the clinical and pathological features of lung cancer with IPF in understanding the pathogenesis of lung cancer in IPF patients. We compared clinicopathological factors of lung cancer in patients with and without IPF. METHODS: A retrospective study was conducted in 711 surgically resected lung cancer patients. Medical records were compared of IPF and non-IPF patients. RESULTS: Of the 711 patients, 53 (7.5%) were IPF patients. Lung cancer in IPF patients was more frequent in elderly male smokers. Most lung cancers in IPF (79%) arose in peripheral areas involving fibrosis (P < 0.01). The incidence of squamous cell carcinoma in the IPF patients (46%) was significantly higher than that in non-IPF patients (22%) (P < 0.01). The incidence of multiple lung cancer in IPF cases (17%) was also significantly higher. CONCLUSIONS: These results suggest that IPF has the potential to develop into lung cancer, especially peripheral squamous cell carcinoma. Further molecular analyses are necessary to clarify the relationship between IPF and lung cancer.     

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.