Punjabi immigrant women’s experiences of breast cancer

There is a notable absence of women from specific ethnocultural groups, including South Asians, in the published breast cancer research. The breast cancer experiences of Punjabi immigrant women, who represent the most populace group of South Asians in British Columbia, need to be understood in order to provide culturally appropriate cancer care. The purpose of this qualitative study was to explore the ways Punjabi immigrant women told stories of having breast cancer in order to uncover how they made sense of their experiences. The cultural and social world reflected in women's stories was also considered. This investigation was a secondary analysis of interview data collected for a larger study investigating South Asian women's experiences of self-discovered breast changes. In-depth, open-ended interviews with twelve Punjabi immigrant women who had breast cancer within the last eight years were available for this study. A combination of narrative analysis strategies were used to guide this secondary analysis, focussing on stories the Punjabi women constructed. Four storylines emerged from the analysis reflecting different constructions of experiences of breast cancer. The storylines were: dealing with just another health problem, surviving a family tragedy, living with never-ending fear and suffering, and learning a lesson from God. The minor theme, "being part of a close-knit family," illustrated the collective experience of breast cancer within the family and highlighted the family context as the most pronounced influence on the women's experiences. The detailed storylines suggest that Punjabi women's constructions of breast cancer are influenced by traditional family roles and expectations, spiritual beliefs, perceptions of breast cancer as treatable/untreatable, fears of speaking about breast cancer, and difficulties with translation and communication. These findings provide valuable insights for health care professionals into how culturally appropriate cancer care might address the needs of Punjabi women with breast cancer and their families.Applied Science, Faculty ofNursing, School ofGraduat

Women's decision making regarding hereditary breast and ovarian cancer risk-reducing strategies

Women found to carry mutations in the BRCA1 or BRCA2 genes have up to an 88% lifetime risk of breast cancer and up to a 65% lifetime risk of ovarian cancer. Strategies to address these heightened risks include breast cancer screening, and risk-reducing (RR) surgeries (i.e., mastectomy and salpingo-oophorectomy). Some women might change their lifestyle or use complementary and alternative medicine to prevent hereditary breast and ovarian cancer (HBOC). The objectives of this research were to describe: a) the HBOC RR strategies used by women prior to receiving their genetic test results, the influence of individual and psychological factors on the uptake of these strategies, and their risk management information needs, b) how women construct the ‘right time’ to consider RR surgery decisions, and c) the process of making decisions regarding HBOC RR strategies. A survey of 143 women was conducted to address the first objective and in-depth interviews with 22 BRCA1/2 carriers were conducted to address the remaining two objectives. Survey respondents engaged in breast cancer screening at the time of genetic testing and a sub-group modified their lifestyle to reduce their cancer risk. Qualitative analyses revealed women’s constructions of the ‘right time’ to consider RR surgery decisions to be when: (1) decisions fit into their lives, (2) they had enough time to think about decisions, (3) they were ready emotionally, (4) all the issues and conflicts were sorted out, (5) there were better options available, and (6) the health care system was ready for them. Grounded theory analyses suggested that the overarching process of making decisions about HBOC RR strategies was one of ‘preserving the self.’ This process was shaped by the characteristics of health services, the nature of HBOC RR decisions, gendered roles, and the women’s perceived proximity to cancer. The women engaged in five decision-making styles, which were characterized by combinations of seven decision-making approaches. Findings from these three studies capture the diverse trajectories of decision making about HBOC risk management and highlight the role of personal and social context in shaping these decisions.Applied Science, Faculty ofNursing, School ofGraduat

Patient-driven research priorities for patient-centered measurement

Abstract Background Patient-centred measurement (PCM) emphasizes a holistic approach wherein the voices of patients are reflected in the standardized use of patient-reported outcome and experience measures and are represented throughout the continuum of measurement activities. Given the challenges of routinely integrating patient self-reports into clinical care decisions, the perspectives of all healthcare system stakeholders, especially patients, is necessary to advance the science of PCM. The purpose of the analysis we report on here was to identify patient-driven research priorities for advancing the science of PCM. Methods We analyzed data from seven focus groups that were conducted across British Columbia, Canada and that included a total of 73 patients, using qualitative inductive analysis and constant comparative methods. Results We found that the patients conveyed a desire for PCM to contribute to healthcare decisions, specifically that their individual healthcare needs and related priorities as they see them are always front and centre, guiding all healthcare interactions. The patients’ commentaries highlighted intersecting priorities for research on advancing the science of PCM that would help transform care by (1) enhancing the patient-provider relationship, (2) giving voice to patients’ stories, (3) addressing inclusivity, (4) ensuring psychological safety, (5) improving healthcare services and systems to better meet patient needs, and (6) bolstering healthcare system accountability. Conclusions These priorities provide direction for future research efforts that would be positioned to make progress towards better health, better care, and better use of resources for individuals and for society

A Supportive-Educational Intervention for Heart Failure Patients in Iran: The Effect on Self-Care Behaviours

Background. Chronic heart failure is a major health and social problem. The promotion of self-care behaviours can potentially assist patients to effectively manage this chronic condition and prevent worsening of the disease. Formal personalized educational interventions that provide support and take into consideration the cultural context are needed. Objective. The objective of this research was to evaluate the effect of a supportive-educational intervention on self-care behaviours of heart failure patients in Iran. Methods. This research was a prospective, randomized trial of a supportive-educational intervention. Eighty heart failure patients were randomly assigned to receive the supportive-educational intervention or usual care. The intervention consisted of a one-hour, nurse-led, in-person education session and postdischarge followup by telephone over three months. Data were collected at baseline, one, two, and three months. Results. The control and intervention groups did not differ in self-care scores at baseline (P>0.05). Each of the self-care scores was significantly higher in the intervention group than the control group at 1, 2, and 3 months (P<0.001). There were significant differences in self-care behaviours over the three months, among participants in the intervention group. Conclusion. This study provides support for the effectiveness of a supportive-educational intervention to increase self-care behaviours among Iranian patients suffering from chronic heart failure

Equity in Critical Illness Survivorship – Exploring the Relationships Between Socioeconomic Factors and Survivorship: Protocol for a Scoping Review

The protocol for a scoping review which aims to systematically map the literature on critical illness survivorship and health equity, in terms of the relationships between socioeconomic position/social determinants of health and post-ICU survivorship outcomes; and then synthesizing the results in order to identify research gaps and research priorities for future work on critical illness survivorshi

Viewpoints of fertile women on gestational surrogacy in East Azerbaijan Province, Iran

The aim of this descriptive, cross-sectional study was to investigate the viewpoint of fertile Iranian women on gestational surrogacy. A convenience sample of 230 fertile women was invited to participate in the study and 185 consented. Data were collected via a 22-item scale that assessed the viewpoints of the participants in five domains related to gestational surrogacy. The viewpoints reported by the women were positive. However, a significant percentage of them believed that commissioning couples are not the biological owners of the baby, religious barriers need to be overcome prior to legal barriers, children born through surrogacy may face emotional issues, and the adoption of children may be a better option than surrogacy. The negative views of the women on some key aspects make it clear that public education is needed to increase the acceptability of gestational surrogacy

Clinical significance in pediatric oncology randomized controlled treatment trials: a systematic review

Background: Clinical significance in a randomized controlled trial (RCT) can be determined using the minimal clinically important difference (MCID), which should inform the delta value used to determine sample size. The primary objective was to assess clinical significance in the pediatric oncology randomized controlled trial (RCT) treatment literature by evaluating: (1) the relationship between the treatment effect and the delta value as reported in the sample size calculation, and (2) the concordance between statistical and clinical significance. The secondary objective was to evaluate the reporting of methodological attributes related to clinical significance. Methods: RCTs of pediatric cancer treatments, where a sample size calculation with a delta value was reported or could be calculated, were systematically reviewed. MEDLINE, EMBASE, and the Cochrane Childhood Cancer Group Specialized Register through CENTRAL were searched from inception to July 2016. Results: RCTs (77 overall; 11 and 66), representing 95 (13 and 82) randomized questions were included for non-inferiority and superiority RCTs (herein, respectively). The minority (22.1% overall; 76.9 and 13.4%) of randomized questions reported conclusions based on clinical significance, and only 4.2% (15.4 and 2.4%) explicitly based the delta value on the MCID. Over half (67.4% overall; 92.3 and 63.4%) reported a confidence interval or standard error for the primary outcome experimental and control values and 12.6% (46.2 and 7.3%) reported the treatment effect, respectively. Of the 47 randomized questions in superiority trials that reported statistically non-significant findings, 25.5% were possibly clinically significant. Of the 24 randomized questions in superiority trials that were statistically significant, only 8.3% were definitely clinically significant. Conclusions: A minority of RCTs in the pediatric oncology literature reported methodological attributes related to clinical significance and a notable portion of statistically insignificant studies were possibly clinically significance.Applied Science, Faculty ofOther UBCNon UBCNursing, School ofReviewedFacult

The use of Arts-Based Research in Chronic Pain: A Scoping Review

Background As an emerging approach, arts-based research holds potential to advance understanding of the complex and multidimensional experiences of chronic pain and means of communicating this experiential evidence. This scoping review aimed to map and explore the extent of arts-based research in chronic non-cancer pain, understand the rationale behind using arts-based research methods, and identify directions for future research.Methods Databases PsycINFO, MEDLINE, EMBASE, and CINAHL were searched for eligible English-language articles from inception to November 2022. Out of 1321 article titles and abstracts screened for eligibility, 18 articles underwent full-text screening, with 14 ultimately meeting all inclusion criteria. We conducted a narrative synthesis of data extracted from the 14 reviewed articles.Results The review articles focused on a wide range of chronic non-cancer pain conditions, with 12/14 employing qualitative methods (86%), one repeated measures experimental design, and another a multiphase, multimethod design. Seven articles described the use of drawing, painting, or mixed-media artwork; four used photography; two used body mapping; and one used e-book creation. The rationale for arts-based research included exploring and better understanding patients’ experiences with chronic non-cancer pain, constructing an intervention, and investigating or validating a clinical tool. Nine articles reported that their arts-based research methods produced unintended therapeutic benefits for participants. Recommendations for future research included using arts-based research to better understand and communicate with patients and providers, exploring convergence with art therapy, and designing creative and flexible multiphased studies involving collaboration across disciplines.Conclusions Despite the wide variation in sample and art modalities across reviewed articles, arts-based methods were considered suitable and highly effective for investigating chronic non-cancer pain

“What We Want Is More Access…”: Experiences of Supportive Cancer Care and Strategies for Advancement in a Canadian Provincial Cancer Care Organization

Objectives: Despite calls for better supportive care, patients and families still commonly bear significant responsibility for managing the physical and mental health and social challenges of being diagnosed with and treated for cancer. As such, there is increased advocacy for integrated supportive care to ease the burden of this responsibility. The purpose of this study was to understand patient and caregiver experiences with supportive care to advance its delivery at a large provincial cancer care organization in Canada. Method: We used a qualitative descriptive approach to analyze focus groups with patients and caregivers from seven sites across the large provincial cancer care organization. Results: Focus group participants (n = 69) included cancer patients (n = 57) and caregivers (n = 12). Participants highlighted positive and negative aspects of their experience and strategies for improvement. These are depicted in three themes: (1) improving patient and provider awareness of services; (2) increasing access; (3) enhancing coordination and integration. Participants’ specific suggestions included centralizing relevant information about services, implementing a coach or navigator to help advocate for access, and delivering care virtually. Conclusions: Participants highlighted barriers to access and made suggestions for improving supportive care that they believed would reduce the burden associated with trying to manage their cancer journey.Applied Science, Faculty ofMedicine, Faculty ofNon UBCMedicine, Department ofNursing, School ofPhysical Medicine and Rehabilitation, Division ofPsychiatry, Department ofReviewedFacultyResearche