Patient and family financial burden associated with cancer treatment in Canada: a national study.

GOAL: To determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada. METHODS: A self-administered questionnaire (P-SAFE v7.2.4) was completed by 901 patients with cancer from twenty cancer centres nationally (344 breast, 183 colorectal, 158 lung, 216 prostate) measuring direct and indirect costs related to cancer treatment and foregone care. Monthly self-reported out-of-pocket-costs (OOPCs) included drugs, homecare, homemaking, complementary/ alternative medicines, vitamins/supplements, family care, accommodations, devices, and "other" costs. Travel and parking costs were captured separately. Patients indicated if OOPC, travel, parking, and lost income were a financial burden. RESULTS: Mean 28-day OOPCs were CA$518 (US Purchase Price Parity [PPP] $416), plus CA$179 (US PPP $144) for travel and CA$84 (US PPP $67) for parking. Patients self-reporting high financial burden had total OOPCs (33%), of CA$961 (US PPP $772), while low-burden participants (66%) had OOPCs of CA$300 (US PPP $241). "Worst burden" respondents spent a mean of 50.7% of their monthly income on OOPCs (median 20.8%). Among the 29.4% who took time off work, patients averaged 18.0 days off. Among the 26.0% of patients whose caregivers took time off work, caregivers averaged 11.5 days off. Lastly, 41% of all patients had to reduce spending. Fifty-two per cent of those who reduced spending were families earning < CA$50,000/year. CONCLUSIONS: In our Canadian sample, high levels of financial burden exist for 33% of patients, and the severity of burden is higher for those with lower household incomes.

Patient Perspectives about Spirituality and Spiritual Care.

OBJECTIVE: This study was undertaken to explore the perspectives regarding spirituality and spiritual care held by individuals with advanced disease. The aim was to gain a deeper understanding about their viewpoints surrounding spiritual care and the role of health-care professionals in providing such care. METHODS: Sixteen individuals with advanced disease and a prognosis of <12 months underwent an in-depth interview. Transcripts were subjected to a qualitative descriptive analysis to identify salient content and themes. RESULTS: Four overall themes were identified: Spirituality is personal, spiritual distress is about separation, spiritual care is about connecting, and conversations about spirituality must align with the patient's beliefs. Subthemes emphasized the individuality of spiritual expression, the potential for illness impacting spiritual beliefs, and the value of connections to one's spiritual community. Participants thought healthcare providers needed to be able to identify individuals who were experiencing a spiritual struggle, acknowledge the reality of that struggle, and connect the individual with the appropriate resource or person. CONCLUSIONS: Patients with advanced disease are likely to express their spirituality in unique ways. Being able to talk about their spiritual beliefs and doubts during illness without judgment was seen as a benefit to them. Healthcare providers ought to be able to identify those patients who require assistance in connecting to appropriate spiritual care resources.

Nursing perspectives on palliative care 2015.

Nurses have an integral role in promoting and providing early palliative care. The provision of palliative care is aligned to the basic tenants of nursing in providing holistic care to individuals and family members. In many parts of the world nurses are the primary health care provider in a community and a primary link between patients and other members of the heath care team. Unfortunately, access to accredited palliative care education remains a challenge for nurses.

Integrating complementary and alternative medicine into cancer care: Canadian oncology nurses' perspectives.

The integration of complementary and alternative medicine (CAM) and conventional cancer care in Canada is in its nascent stages. While most patients use CAM during their cancer experience, the majority does not receive adequate support from their oncology health care professionals (HCPs) to integrate CAM safely and effectively into their treatment and care. A variety of factors influence this lack of integration in Canada, such as health care professional(HCP) education and attitudes about CAM; variable licensure, credentialing of CAM practitioners, and reimbursement issues across the country; an emerging CAM evidence base; and models of cancer care that privilege diseased-focused care at the expense of whole person care. Oncology nurses are optimally aligned to be leaders in the integration of CAM into cancer care in Canada. Beyond the respect afforded to oncology nurses by patients and family members that support them in broaching the topic of CAM, policies, and position statements exist that allow oncology nurses to include CAM as part of their scope. Oncology nurses have also taken on leadership roles in clinical innovation, research, education, and advocacy that are integral to the safe and informed integration of evidence-based CAM therapies into cancer care settings in Canada.

Identifying supportive care needs of women with ovarian cancer.

Women diagnosed with ovarian cancer may experience many shortterm and long-term effects from cancer and its treatment. Cancer has more than a physical impact, yet there is a lack of information about the types of needs these women have and whether they want help in meeting their needs. The main purpose of this cross-sectional, descriptive study was to identify the supportive care needs (physical, emotional, social, informational, spiritual, psychological and practical) of women with ovarian cancer who attended a comprehensive, outpatient cancer centre. A further purpose was to determine if women wanted assistance in meeting those needs. A total of 50 women diagnosed with ovarian cancer participated in this study by completing a self-report questionnaire (The Supportive Care Needs Survey). The data indicated that a range of supportive care needs remained unmet for this patient group. Eight of the top 10 most frequently reported needs were psychosocial, such as fears about the cancer returning or spreading. The women also expressed a range of difficulty in managing their needs. However, despite this reality, significant numbers of women indicated they did not wish to have assistance from the clinic staff with some needs. Suggestions for practice and future research are offered to assist oncology nurses in providing care to these women.

Supportive care needs of individuals with lung cancer.

The main purpose of this study was to identify the range of supportive care needs of patients diagnosed with lung cancer who attended an outpatient, regional cancer centre. Lung cancer has more than a physical impact on those who are diagnosed with the disease, yet relatively little has been reported on their needs beyond those for physical symptom management. A total of 88 patients participated in this study by completing a self-report questionnaire. The data provided clear indication that a range of needs, both physical and psychosocial, exist for this group of patients and, furthermore, remain unmet. Lack of energy, pain, and concern about those close to them were reported most frequently. Patients also expressed distress because of difficulty managing their needs and many indicated wanting help to cope with the challenges they were experiencing. However, a sizeable proportion (45% to 58%) indicated they did not want help from staff at the cancer centre for some need items despite considerable distress arising from those remaining unmet (e.g., lack of energy, fears about cancer spreading, not being able to do the things you used to do). Suggestions for practice and future research are offered to improve the care for this group of patients.

Supportive care needs of women with gynecologic cancer.

Gynecologic cancers often place a heavy emotional and physical burden on patients. However, there is a lack of information about the types of supportive care needs that these patients have, the services that are available, and whether patients want help with their needs. The aims of this cross-sectional, descriptive study were to (1) identify the supportive care needs (physical, emotional, social, spiritual, psychological, informational, and practical) of women with gynecologic cancer who attended a comprehensive, outpatient cancer center in Ontario, Canada, and (2) determine if patients wanted assistance in meeting those needs. A total of 103 patients participated in this study by completing a self-report questionnaire. Sixty-five of the women were no longer on treatment at the time of completing the survey. Eight of the top 10 most frequently reported needs were non physical, such as fears about the cancer returning or spreading. The data indicated that a range of needs remained unmet for this patient group. However, identifying the presence of a need did not necessarily mean that a patient wanted to have assistance with the need. Suggestions for practice and future research are offered to assist healthcare professionals in providing care to these patients.

Young women's experiences with breast cancer: an imperative for tailored information and support.

This work was undertaken to provide a basis for determining the type of assistance young women living with breast cancer would find useful. In-depth interviews were conducted with 28 women diagnosed with breast cancer before the age of 45 years about their experiences with breast cancer. They ranged in age from 28 to 42 years at the time of diagnosis. Three overarching themes emerged from the analysis--"everything depends on acting now," "everything is out of sync," and "cancer invaded my whole life." These women shared perspectives similar to those of older women, but also held perspectives unique to being young, with young families and busy career lives. Many found services did not match their requirements and they urged the creation of services tailored to their unique needs.

Understanding the supportive care needs of parents of children with cancer: an approach to local needs assessment.

The objective of this study was to conduct an assessment of supportive care needs from the perspective of parents of children diagnosed with cancer within an urban-rural region in Eastern Ontario, Canada. Guided by a conceptual framework for supportive care, the exploratory, mixed-method study used a standard needs survey and semistructured interviews. Fifteen parents completed (75% response rate) the survey, and 3 parents participated as key informants in the follow-up interview. Parents reported needs in all 6 of the need categories outlined within the Supportive Care Needs Framework. The proportion of parents expressing a need ranged from 23% to 39%. Dealing with the fear of their child's cancer spreading was frequently identified by parents. Emotional and informational needs were the 2 most frequently acknowledged categories of need. With further refinement, the use of the conceptual framework will provide a methodology for planning care based on the individual needs identified by parents of children with cancer.

'Nothing fit me': nationwide consultations with young women with breast cancer.

OBJECTIVE: There exists little research about the experience of breast cancer for young women in Canada. To address this gap, the Canadian Breast Cancer Network (CBCN) and the Ontario Breast Cancer Community Research Initiative undertook a research project to explore the information and support experiences, needs and recommendations of geographically diverse Canadian young women with breast cancer. SETTING AND PARTICIPANTS: We consulted with 65 young women in 10 focus groups held across Canada. All women had been diagnosed with breast cancer at, or before, 45 years of age. During the consultations the women were asked to discuss their information and support experiences and needs, as well as resource recommendations related to their diagnosis, treatment and survivorship. MAIN RESULTS: The overarching theme, 'Nothing Fit Me', revealed that accessed information, support and programmes/services did not 'fit' or match the women's age or life stage. When we asked for their recommendations the young women suggested that information and support match their age and life stage and that health-care providers create and implement several topical workshops concerning, for example, sexuality, lymphedema and reconstruction. CONCLUSION: The findings will be used by the CBCN as a general platform from which to conduct further research and/or action strategies. The CBCN will also implement the recommendations from this groundbreaking work as this network formulates a national strategy for young women with breast cancer.

Travelling for radiation cancer treatment: patient satisfaction.

This study was conducted for the purpose of describing cancer patients' satisfaction with their care when they had to travel unexpectedly away from home for treatment. Ontario initiated a rereferral program for cancer patients who needed radiation therapy when the waiting lists in southern Ontario became lengthy. Patients travelled to the United States or northern Ontario for their care. A standardized survey containing 25 items with five-point Likert scale responses was mailed to all patients who participated in the rereferral program, following completion of their treatment. Items covered patient experiences before leaving home, in preparing for travel, and staying at the cancer facilities away from home. A total of 466 (55.8%) patients returned the survey. Overall, patients were satisfied with their care. However, there were a number of areas identified by patients where improvements could be made. These areas included access to support prior to leaving home, access to information about supportive care services while away from home, and sensitivity to personal needs in making arrangements for travel. Provision of information and support are important to cancer patients having to travel for cancer treatment.

Needs of patients living with advanced disease.

When a person has a life-threatening illness, many changes occur. These changes are more than just physical changes and include psychosocial, practical and spiritual consequences. If disease progresses, the impact of these changes intensifies. Nurses who are caring for patients with advancing disease must be able to provide appropriate interventions if they are to help individuals cope. This paper highlights information regarding the needs of patients with advanced disease and emphasizes approaches that could be taken by cancer nurses in their care of these patients. The material is drawn from over a decade of interviewing patients about their experiences with cancer, the literature about patient needs, and discussions with care providers. The over-arching perspective is one of seeing human beings as bio-psychosocial-spiritual entities. Holding this perspective has implications for assessment and interventions in caring for patients with advanced disease.

Psychosocial management of patients with recurrent ovarian cancer: treating the whole patient to improve quality of life.

OBJECTIVES: To describe the psychosocial issues affecting women with recurrent ovarian cancer and provide suggestions for screening to provide appropriate referrals. DATA SOURCES: Research articles and textbooks. CONCLUSION: Nursing care may involve practical, informational, and emotional support. Screening patients for psychosocial distress can be conducted quickly and is important to identify patients requiring additional interventions. IMPLICATIONS FOR NURSING PRACTICE: Nurses should be familiar with the National Comprehensive Cancer Network guidelines regarding distress management. Psychosocial support requires a commitment to addressing the individual psychosocial needs of each patient. Nurses play an invaluable role in helping to improve the quality of life for women with recurrent ovarian cancer.