Empowering Cancer Survivors in Managing Their Own Health: A Paradoxical Dynamic Process of Taking and Letting Go of Control.

In cancer care, gaps in support to help patients manage and live with the side-effects from cancer treatments have increased the emphasis on empowering patients to be more active and involved in managing their own health. However, empowerment in relation to promoting self-management behaviors is not well understood. Using the social constructivist grounded theory approach, our goal was to develop a theoretical understanding of this phenomenon in relation to the self-management behaviors of post-treatment cancer patients. Twenty-two post-treatment cancer patients participated in a semi-structured focused interview to co-construct with us how empowerment is defined, described, and experienced in relation to their capacity to self-manage. Through this co-construction, we defined empowerment as a process of personal growth, a display of fortitude and strength when participants confronted the impact of their illness that emerged in two dynamic and paradoxical ways: 1) establishing control over the impact of the illness as a means to maintain normalcy and to circumvent change over an eroding and changing sense of self and 2) relinquishing control over aspects of the illness deemed irrepressible and acknowledging and accepting change. When successful at establishing and/or relinquishing control, participants no longer viewed cancer as a threat, but re-interpreted their illness as also having a beneficial "empowering" experience and more capable of managing. Findings will guide the development of self-management interventions that use empowerment as a core construct.

Complex skills are required for new primary health care researchers: a training program responds.

BACKGROUND: Current dimensions of the primary health care research (PHC) context, including the need for contextualized research methods to address complex questions, and the co-creation of knowledge through partnerships with stakeholders - require PHC researchers to have a comprehensive set of skills for engaging effectively in high impact research. MAIN BODY: In 2002 we developed a unique program to respond to these needs - Transdisciplinary Understanding and Training on Research - Primary Health Care (TUTOR-PHC). The program's goals are to train a cadre of PHC researchers, clinicians, and decision makers in interdisciplinary research to aid them in tackling current and future challenges in PHC and in leading collaborative interdisciplinary research teams. Seven essential educational approaches employed by TUTOR-PHC are described, as well as the principles underlying the curriculum. This program is unique because of its pan-Canadian nature, longevity, and the multiplicity of disciplines represented. Program evaluation results indicate: 1) overall program experiences are very positive; 2) TUTOR-PHC increases trainee interdisciplinary research understanding and activity; and 3) this training assists in developing their interdisciplinary research careers. Taken together, the structure of the program, its content, educational approaches, and principles, represent a complex whole. This complexity parallels that of the PHC research context - a context that requires researchers who are able to respond to multiple challenges. CONCLUSION: We present this description of ways to teach and learn the advanced complex skills necessary for successful PHC researchers with a view to supporting the potential uptake of program components in other settings.

Interventions to improve cancer survivorship among Indigenous Peoples and communities: a systematic review with a narrative synthesis.

PURPOSE: The purpose of this systematic review is to synthesize the evidence on the types of interventions that have been utilized by Indigenous Peoples living with cancer, and report on their relevance to Indigenous communities and how they align with holistic wellness. METHODS: A systematic review with narrative synthesis was conducted. RESULTS: The search yielded 7995 unique records; 27 studies evaluating 20 interventions were included. The majority of studies were conducted in USA, with five in Australia and one in Peru. Study designs were cross-sectional (n=13); qualitative (n=5); mixed methods (n=4); experimental (n=3); and quasi-experimental (n=2). Relevance to participating Indigenous communities was rated moderate to low. Interventions were diverse in aims, ingredients, and outcomes. Aims involved (1) supporting the healthcare journey, (2) increasing knowledge, (3) providing psychosocial support, and (4) promoting dialogue about cancer. The main ingredients of the interventions were community meetings, patient navigation, arts, and printed/online/audio materials. Participants were predominately female. Eighty-nine percent of studies showed positive influences on the outcomes evaluated. No studies addressed all four dimensions of holistic wellness (physical, mental, social, and spiritual) that are central to Indigenous health in many communities. CONCLUSION: Studies we found represented a small number of Indigenous Nations and Peoples and did not meet relevance standards in their reporting of engagement with Indigenous communities. To improve the cancer survivorship journey, we need interventions that are relevant, culturally safe and effective, and honoring the diverse conceptualizations of health and wellness among Indigenous Peoples around the world.

A scoping review of studies exploring leisure-time physical activity in adults diagnosed with advanced cancer.

OBJECTIVES: Despite improving survival rates, people with advanced cancer face several physical and psychosocial concerns. Leisure-time physical activity (LPA) has been found to be beneficial after cancer diagnosis, but little is known about the current state of research exploring LPA in advanced cancer. Our objectives were to (a) map the literature examining LPA in people with advanced cancer, (b) report on the terms used to describe the advanced cancer population within the literature, and (c) examine how the concept of LPA is operationalized within the literature. METHOD: Our scoping review followed Arksey and O'Malley's methodological framework. We performed a search of 11 electronic databases and supplementary sources (February 2018; database search updated January 2020). Two reviewers independently reviewed and selected articles according to the inclusion criteria: English-language journal articles on original primary research studies exploring LPA in adults diagnosed with advanced cancer. Descriptive and thematic analyses were performed. RESULTS: Ninety-two articles met our criteria. Most included studies were published in the last decade (80%) and used quantitative methods (77%). Many study populations included mixed (40%), breast (21%), or lung (17%) cancers. Stages 3-4 or metastatic disease were frequently indicated to describe study populations (77%). Several studies (68%) described LPA programs or interventions. Of these, 78% involved structured aerobic/resistance exercise, while 16% explored other LPA types. SIGNIFICANCE OF RESULTS: This review demonstrates a recent surge in research exploring LPA in advanced cancer, particularly studies examining exercise interventions with traditional quantitative methods. There remains insufficient knowledge about patient experiences and perceptions toward LPA. Moreover, little is known about other leisure activities (e.g., Tai Chi, dance, and sports) for this population. To optimize the benefits of LPA in people with advanced cancer, research is needed to address the gaps in the current literature and to develop personalized, evidence-based supportive care strategies in cancer care.

Spirituality in cancer survivorship with First Nations people in Canada.

BACKGROUND: Advancements in cancer survivorship care have shown that holistic approaches, tailored to people's unique survivorship needs, can decrease cancer burden and enhance well-being and quality of life. The purpose of this study was to explore the meanings of spirituality in cancer survivorship for First Nations people, the largest Indigenous population in Canada, and describe how spiritual practices are incorporated into healing. METHODS: This study is part of a larger arts-based project about cancer survivorship with First Nations people. Thirty-one cancer survivors discussed spirituality as part of their cancer survivorship experiences. Data were generated through sharing sessions (n = 8) and individual interviews (n = 31). Qualitative descriptive analysis was conducted. RESULTS: Three themes emerged about the meaning of spirituality in cancer survivorship. Spirituality was expressed as a complex phenomenon that (1) interconnected self with traditional roots and culture, (2) merged the body and mind, and (3) gave meaning, strength, and faith in the cancer journey. First Nations people incorporated spirituality into cancer survivorship by giving thanks, attending places of spiritual connectedness, singing, praying, speaking to the Creator, and engaging the sun and moon. CONCLUSION: First Nations cancer survivors have viewed cancer as an opportunity for emotional and spiritual growth that enabled healing. Understanding the role of spirituality in cancer survivorship is important to develop and deliver culturally safe health services that reduce the burden of cancer and ultimately improve outcomes for First Nations people in Canada.

Perspectives of healthcare professionals on patient Internet use during the cancer experience.

In this study, we document cancer healthcare professionals' views of patients' use of cancer-related Internet information (CRII) and their views on how it informs the ways patients interact with healthcare professionals and services from the point of view of health professionals. We used an interpretive descriptive approach, conducting interviews and focus groups with oncology healthcare professionals (n = 21) at a University-affiliated western Canadian cancer treatment centre. Data were analysed using thematic analysis. We present an initial understanding of how CRII alters, informs and modulates patients' cancer experience and relates to their interactions with healthcare professionals and services. Findings were synthesised into two thematic categories: pragmatic concerns and priorities; and processes and practices. Healthcare professionals were supportive of patients' needs for more information, particularly at key points in the cancer trajectory when information may be lacking. Participants concurred that CRII could positively benefit patients and, if shared with their healthcare professional, could benefit the patient-healthcare professional relationship. Oncology healthcare professionals provide pivotal information to patients; thus, they are well situated to engage patients in discussions about CRII and incorporate this into patient encounters. These actions may open new lines of communication with patients, strengthen the patient-professional relationship and empower patients to be engaged in their own care.

Exploring Gender-Related Experiences of Cancer Survivors Through Creative Arts: A Scoping Review.

Negative health consequences of cancer and its treatments are multifaceted. Research suggests numerous psychosocial benefits may be gained by cancer survivors who engage in arts-based practices. To grasp the breadth of this literature, we undertook a scoping review exploring the intersection between arts-based practices, gender, and cancer. Three databases were searched according to the following criteria: (a) participants older than 18 years, (b) use of arts-based practices, (c) explore cancer survivorship, and (d) gender-based analysis component. A total of 1,109 studies were identified and 11 met inclusion criteria. Themes extracted illustrate four transformative moments related to gender identities postcancer diagnosis: (a) fostering reflection after a cancer diagnosis, (b) constructing new narratives of gender postcancer, (c) navigating gender norms in search of support for new identities, and (d) interrogation of perceived gender norms. Findings demonstrate potential contributions of arts-based practices in shaping cancer-related gender identities. Future research should investigate these experiences across a wider population.

Barriers and facilitators to cultural competence in rehabilitation services: a scoping review.

BACKGROUND: There is an important need to evaluate whether rehabilitation services effectively address the needs of minority culture populations with North America's increasingly diverse population. The objective of this paper was therefore to review and assess the state of knowledge of barriers and facilitators to cultural competence in rehabilitation services. METHOD: Our scoping review focused on cultural competence in rehabilitation services. Rehabilitation services included in this review were: audiology, speech-language pathology, physiotherapy, and occupational therapy. A search strategy was developed to identify relevant articles published from inception of databases until April 2015. Titles and abstracts were screened by two independent reviewers according to specific eligibility criteria with the use of a liberal-accelerated approach. Full-text articles meeting inclusion criteria were then screened. Key study characteristics were abstracted by the first reviewer, and findings were verified by the second reviewer. RESULTS: After duplicates were removed, 4303 citations were screened. Included articles suggest that studies on cultural competence occur most frequently in occupational therapy (n = 17), followed by speech language pathology (n = 11), physiotherapy (n = 6), and finally audiology (n = 1). Primary barriers in rehabilitation services include language barriers, limited resources, and cultural barriers. Primary facilitators include cultural awareness amongst practitioners, cultural awareness in services, and explanations of health care systems. CONCLUSION: To our knowledge, this review is the first to summarize barriers and facilitators to cultural competence in rehabilitation fields. Insufficient studies were found to draw any conclusions with regards to audiological services. Minimal perspectives based on patient/caregiver experiences in all rehabilitation fields underscore a research gap. Future studies should aim to explore both patient/caregiver and practitioner perspectives as such data can help inform culturally competent practices.

Ways of knowing on the Internet: A qualitative review of cancer websites from a critical nursing perspective.

People diagnosed with cancer typically want information from their doctor or nurse. However, many individuals now turn to the Internet to tackle unmet information needs and to complement healthcare professional information. The purpose of this study was to qualitatively explore the content of commonly searched cancer websites from a critical nursing perspective, as this information is accessible, and allows patients to address their information needs in ways that healthcare professionals cannot. This qualitative examination of websites is informed by Carper's fundamental patterns of knowing and complemented with the critical view to technology espoused by the philosophy of technology. We conducted a review of 20 websites using a two-step interpretive descriptive approach and thematic analysis. We identified the dominant discourse to be focused on empirical information on treatment, prognosis, and cure, and a paucity of sociopolitical, ethical, personal, and esthetic information. In place of holistic, nuanced, and accurate knowledge nurses may provide, patients find predominantly empirical and biomedical information online. Discussion explores and critiques online cancer content, gaps in information, and the importance of information diversity. Implications focus on needed discourse around pervasive technologies and the nursing role in assessing and directing patients to holistic information.

Cycles of silence: First Nations women overcoming social and historical barriers in supportive cancer care.

BACKGROUND: First Nations people with cancer in Canada confront several critical inequities in physical and psychosocial domains. First Nations women are at a particular disadvantage as they are disproportionately affected by social determinants of health, but how they navigate these challenges within their communities is poorly understood. OBJECTIVE: Our study explores survivorship experiences of First Nations women with cancer and their caregivers. Drawing from a larger data set on survivorship, we identify several major barriers to cancer communication and support in First Nations communities. METHODS: Our team conducted a participatory, arts-based study using several data collection methods (interviews, sharing sessions, photovoice, and other creative activities) with 43 participants (24 cancer survivors and 19 caregivers) from four First Nations communities in Canada. RESULTS: Two major themes have emerged out of our data analyses: (1) suffering without support leads to cycles of silence and (2) community-based supports can disrupt these cycles. We identified several social, historical, and institutional barriers to speaking about cancer and finding/providing support; however, communities met the challenge of silence through voluntary and unsolicited provision of support. CONCLUSIONS: Widespread silence around cancer reflects both the limited access First Nations people have to formal, supportive programs and services, as well as the creative ways they provide emotional, social, and financial support within their informal networks. Beyond the support of their communities, they also required institutional provision of care that is culturally safe, addressing the colonial impacts on cancer communication and the disproportionate burdens of disease in First Nations communities.

Ottawa Panel Evidence-Based Clinical Practice Guidelines for Structured Physical Activity in the Management of Juvenile Idiopathic Arthritis.

OBJECTIVE: To create guidelines focused on the use of structured physical activity (PA) in the management of juvenile idiopathic arthritis (JIA). DATA SOURCES: A systematic literature search was conducted using the electronic databases Cochrane Central Register of Controlled Trials, MEDLINE (Ovid), EMBASE (Ovid), and Physiotherapy Evidence Database for all studies related to PA programs for JIA from January 1966 until December 2014, and was updated in May 2015. STUDY SELECTION: Study selection was completed independently by 2 reviewers. Studies were included if they involved individuals aged ≤21 years diagnosed with JIA who were taking part in therapeutic exercise or other PA interventions for which effects of various disease-related outcomes were compared with a control group (eg, no PA program or activity of lower intensity). DATA EXTRACTION: Two reviewers independently extracted information on interventions, comparators, outcomes, time period, and study design. The statistical analysis was reported using the Cochrane Collaboration methods. The quality of the included studies was assessed according to the Physiotherapy Evidence Database Scale. DATA SYNTHESIS: Five randomized controlled trials (RCTs) fit the selection criteria; of these, 4 were high-quality RCTs. The following recommendations were developed: (1) Pilates for improving quality of life, pain, functional ability, and range of motion (ROM) (grade A); (2) home exercise program for improving quality of life and functional ability (grade A); (3) aquatic aerobic fitness for decreasing the number of active joints (grade A); and (4) and cardio-karate aerobic exercise for improving ROM and number of active joints (grade C+). CONCLUSIONS: The Ottawa Panel recommends the following structured exercises and physical activities for the management of JIA: Pilates, cardio-karate, home and aquatic exercises. Pilates showed improvement in a higher number of outcomes.

Writing toward well-being: A qualitative study of community-based workshops with breast cancer survivors.

Transitioning to breast cancer survivorship can be challenging, yet there are few community-based supports. Writing is a promising psychosocial intervention, but most studies have evaluated independent writing. In contrast, our qualitative study (n=12) explored women's experiences in a community-based workshop. The analysis of workshop recordings, journals, and interviews resulted in three themes: (a) Sharing in safe spaces, (b) Seeking permission and balance, and (c) Fear and uncertainty. The themes document unmet needs related to the emotional impact of breast cancer, as well as the potential of community-based writing to enhance well-being. Such programs may address gaps in cancer survivorship care by providing safe spaces for emotional expression, while supporting participants in the crafting of new narratives focused on well-being.

A longitudinal analysis of chronic arm morbidity following breast cancer surgery.

Arm morbidity (AM) arising from breast cancer (BC) treatment can detrimentally impact quality of life; often limiting a survivor's ability to participate in valued activities. The present study explored (a) the developmental time course of AM [restricted range of motion (ROM), pain, and arm volume changes], negative affect, and perceived disability in the immediate years post-surgery, and (b) the mediating role of perceived disability on the relationship between AM and negative affect over time. In this 5-year longitudinal study, BC survivors from four Canadian oncology clinics (n = 431) completed five annual clinical assessments, where differences in ROM (shoulder abduction, external rotation) and arm volume between the affected and non-affected arm were measured. The profile of mood states (POMS), disability of arm, shoulder, hand, and McGill Pain Questionnaire-Short form were completed. Results from general linear modeling showed that AM, negative affect, and perceived disability were greatest 1-year post-surgery, declined, and with the exception of arm volume changes, were significantly lower 5 years later. Negative affect was significantly associated with restrictions in shoulder abduction and external rotation (average r = -0.15; p < 0.05) and present arm pain (average r = 0.28, p < 0.01) at most assessments. The mediating role of perceived disability on the relationship between AM and negative affect was statistically significant in a majority of assessments. Perceived disability is the underlying factor driving the relationship between AM and mood disturbance over time. Rehabilitative therapy to improve survivors' functional well-being might mitigate the negative impacts of AM on emotional health.

Yoga as palliation in women with advanced cancer: a pilot study.

OBJECTIVE: The purpose of this pilot study was to investigate the palliative potential of home-based yoga sessions provided to women with advanced cancer. METHOD: Personalised 45-minute yoga sessions were offered to three women with advanced cancer by an experienced yoga teacher. Each woman took part in a one-to-one interview after the completion of the yoga programme and was asked to describe her experiences of the programme's impact. RESULTS: The personalised nature of the yoga sessions resulted in similar positive physical and psychosocial effects comparable to those demonstrated in other studies with cancer patients. Participants described physical, mental, and emotional benefits as well as the alleviation of illness impacts. The enhancement of mind-body and body-spirit connections were also noted. CONCLUSION: Personalised home-based yoga programmes for people with advanced cancer may produce similar benefits, including palliation, as those institutionally-based programmes for people with non-advanced cancer.

'All I can do is help': Transition experiences of male spouse caregivers of women with breast cancer.

The transition experience of male spouses of women with breast cancer is largely unknown. Ninety-one open-ended surveys of male spouses were analyzed using thematic analysis to understand the transition experience of this population when their partners were diagnosed and treated for breast cancer. While 10 participants indicated they experienced no changes, the majority experienced changes to their roles and relationships, their mental health, and their share of household work. Spouses took on a supportive role. They adjusted to the changes they faced by proactively becoming aware of their situation, fostering a positive approach, and being actively involved in their partners' experiences. Implications for nurses entail recognizing the role of the spouse, as well as facilitating access to reliable information and support networks.

Physicians' perspectives on cancer survivors' work integration issues.

OBJECTIVE: To explore physicians' perspectives on supporting cancer survivors' work integration (WI) issues. DESIGN: Using vignette methodology, 10 physicians were individually interviewed. Interviews were audiorecorded, transcribed, and subsequently analyzed. SETTING: Ontario. PARTICIPANTS: A total of 10 physicians participated: 5 oncologists and 5 FPs. METHODS: An inductive interpretive description approach was used to identify themes across the entire data set. MAIN FINDINGS: Physicians primarily focused on patients' medical needs and did not spontaneously address WI issues with them. Instead, it was their patients who raised WI issues, most often owing to insurance requirements. Physicians readily completed insurance forms to aid patients' well-being, but they did not believe their guidance was empirically sound based upon their limited WI training; rather, they recognized other health professionals, such as occupational therapists, as being better equipped to address cancer survivors' WI issues. Despite this recognition, referrals for WI support were not routinely facilitated owing to a lack of resources or knowledge. CONCLUSION: Owing to a lack of training and time, as well as the belief that WI issues are not part of their mandate of care, physicians perceive themselves as ill-equipped to address cancer survivors' WI issues. These findings underscore the need for enhanced awareness of cancer survivors' WI issues and the need for accessible support services offered by duly trained health care professionals, such as occupational therapists, ideally working in a multidisciplinary team to holistically address cancer survivors' unique needs.

Loss, adaptation and new directions: The impact of arm morbidity on leisure activities following breast cancer.

The impact of arm morbidity on leisure and quality of life is an understudied area in cancer survivorship. The purpose of this study was to qualitatively describe the impact of breast cancer-related arm morbidity on leisure participation in Canadian women. A grounded theory approach was used to generate thematic categories and a model. Drawing on participants from a larger cohort study (n = 740), 40 women with arm morbidity symptoms were purposively sampled and interviewed. Three themes emerged: a sense of loss, adapting participation, and new directions. Women with arm morbidity may experience an abrupt loss of previously enjoyed leisure activities and engage in a process of adapting to discover new meanings and directions. Comprehensive, person-centred cancer survivorship programs may assist with adaptation to arm morbidity.

Beyond the body: insights from an Iyengar yoga program for women with disability after breast cancer.

Lymphedema, pain, and range of motion restrictions after breast cancer remain underexplored, and few interventions have been developed for these women. Together with a yoga instructor, our interdisciplinary research team developed a yoga program for women with lymphedema after breast cancer (n = 13). Qualitative interviews and participants' journals show that there were a number of benefits to the yoga program. Themes outlining these are (1) understanding arm morbidity; (2) becoming aware of posture; and (3) countering fatigue. More surprisingly, perhaps, the participants also described the ways in which yoga furthered their understandings of loss associated with disability, the fourth theme, and showed that yoga enhanced their experiences of embodiment, the final theme. Finally, we assert that our research demonstrates the potential for qualitative research connected to the evaluation of interventions and that it demonstrates the blurring of traditional boundaries between interventions and data collection.

Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest: Improving Care for Families Experiencing Childhood Cancer.

The purpose of this secondary analysis was to develop an enhanced understanding of the experiences of parents who have children in treatment for cancer. Data collected from 16 parents (12 mothers and 4 fathers) were analyzed using Frank's dialogical narrative analysis. Findings demonstrated that parents' experiences were represented in chaos, restitution, and quest narratives. Each of these narratives was only one instance of a very complex and changing parental experience that cannot be understood in isolation from the others. The holistic understanding provided by these findings contributes to a more comprehensive understanding of parental experiences of their child's illness and highlights the need for health professionals to invite conversations about parents' illness experience and attend to the specific narrative type parents are presenting to support them adequately. Additional research is required to develop supportive approaches for each narrative which takes into account the complexities of parents' experiences.

Survivors' experiences of return to work following cancer: A photovoice study.

BACKGROUND: For many working-age cancer survivors, return to work represents a quality-of-life indicator. However, there is currently a lack of resources to assist survivors with navigating this process. PURPOSE: As a first step toward informing resources to address this gap, 10 female survivors' return-to-work experiences were explored. METHOD: Photovoice methods were combined with interviews. Photographs and text were analyzed to identify key themes. FINDINGS: Return to work was psychosocially motivated. Survivors independently decided if they would take leave and, if so, when they would return to work. Successful work reintegration was characterized as respectful, collaborative, and customized to each survivor's ongoing limitations and variable recovery. IMPLICATIONS: The findings underscore a holistic, client-centred, and collaborative approach to successful return to work with cancer survivors. Occupational therapists, with their vocational rehabilitation knowledge and responsive practice philosophy, are well positioned to address this gap in survivorship support.