Alignment of patient-centredness definitions with real-life patient and clinician experiences: A qualitative study.

INTRODUCTION: Patient-centred care (PCC) has come to the forefront for many institutions, funding agencies and clinicians, and is integrated into care. Does a disconnect in understanding still exist between patients, healthcare organizations and clinicians in what PCC means and how outstanding issues might be addressed? METHODS: We conducted interviews and focus groups with self-reported chronic care patients and clinicians providing care to these patients exploring PCC experiences, expectations and practices. These data were initially analysed using inductive thematic analysis. This paper reports on the findings of a secondary analysis examining the alignment between patients and clinicians on five key predetermined dimensions of PCC. RESULTS: Eighteen patients participated, representing a range of chronic conditions. Thirty-eight clinicians participated. One thousand and three hundred patient and 1800 clinician codes were identified and grouped into 5 main topics with 140 unique themes (patients) and 9 main topics with 54 unique themes (clinicians). A total of 166 quotes (patient = 93, clinician = 73) were identified for this PCC definition alignment analysis. Partial or complete alignment of patient and clinician perspectives was seen on most dimensions. Key disconnects were observed in patient involvement, patient empowerment and clinician-patient communication. Only 18% of patients reported experiencing patient-centred communication, whereas 57% of clinicians reported using patient-focused communication approaches. CONCLUSION: Overall, study patients and clinicians endorse that many PCC elements occur. This study highlights key differences between patients and clinicians, suggesting persistent challenges. Clinician participants relayed their PCC approaches of informing and educating patients; however, patients often perceive these approaches as didactic, role-diminishing and noncollaborative. Collaborative approaches, such as shared decision-making, hold promise to bridge persistent PCC gaps and should be integrated into medical education programmes. PATIENT OR PUBLIC CONTRIBUTION: This project was conceived and executed with a co-design approach wherein patients with chronic conditions who are trained in research (i.e., see descriptions of Patient and Community Engagement Research in the text) were involved in all stages of the research project alongside other researchers on the project team. Healthcare providers were involved as participants and as principal investigators in the project.

Exploring the psychosocial morbidity of women undergoing chemotherapy for breast cancer in a post-war setting: experiences of Northern Sri Lankan women.

PURPOSE: A breast cancer diagnosis leads to considerable internal conflict and social disruption. Coping with breast cancer may be especially challenging where psychosocial services are not integrated to cancer care. This exploratory descriptive qualitative study delves into breast cancer-associated psychosocial morbidity among women diagnosed with breast cancer at a cancer centre in post-war northern Sri Lanka. METHODS: Fifteen women with non-metastatic breast cancer and treated with curative intent, who were undergoing or had completed adjuvant chemotherapy, were included in the study. Data were gathered through semi-structured interviews and thematically analysed. RESULTS: Aside from the immediate effects of chemotherapy, participants grappled with concerns of body image, social stigma, and dependency while straddling anxieties about the fate of their families and expenses on cancer care. Demonstrating remarkable strength and resilience, however, they drew on their families and communities for support in the absence of a formal system of psychosocial care. These women's narratives shed light on certain universal aspects of the breast cancer experience as well as its specificity in a region devastated by war, where cancer care is delivered with minimal resources. CONCLUSION: The findings underscore the need to invest in integrating psychosocial services to chronic illness care in low- and middle-income settings.

Balancing it out: A grounded theory of how midwifery students at a faith-based university in Papua New Guinea provide care to women following stillbirth.

Providing care to women following stillbirth affects the well-being of midwifery staff. In this grounded theory study, the authors used focus groups and individual interviews to explore the experiences of midwifery students at a faith-based university in Papua New Guinea. Balancing it Out is the process students used to balance social, cultural and professional factors to achieve their aim of providing the best possible care to women following stillbirth. Provision of holistic care to women following stillbirth and cross-sector health promotion are crucial to attain the best outcomes for women and the midwifery staff who provide their care.

Imminent birth education for rural and remote settings: An evaluation study.

OBJECTIVE: To describe the development and evaluation of an educational resource that aimed to provide the non-midwifery workforce in rural and remote health facilities with basic knowledge and skills to assist women who present when birth is imminent. DESIGN: Descriptive methods using surveys were employed to evaluate the resource named the Imminent Birth Education Program. PARTICIPANTS: Health professionals employed in Queensland Health rural and remote non-birthing facilities. INTERVENTION: An evidence-based, blended educational program comprising an online component, a face-to-face workshop and an education package for midwives to facilitate the workshop in their health service. RESULTS: More than 600 participants completed the online course component, and the majority of these participants were employed in non-birthing facilities. Throughout the project, two project officers facilitated face-to-face workshops, training participants to facilitate the workshop in their own health services. The reach of the Imminent Birth Education Program was statewide with clinical staff from all 16 Hospital and Health Services participating. CONCLUSION: The uptake of the Imminent Birth Education Program has been widespread across the state and positively evaluated by the rural and remote non-midwifery workforce in non-birthing facilities. This evidence-based program is an effective way to provide the knowledge, skills and confidence to assist health professionals to care for women who present to these facilities when birth is imminent.

Difficulties experienced by veterinarians when communicating about emerging zoonotic risks with animal owners: the case of Hendra virus.

BACKGROUND: Communication skills are essential for veterinarians who need to discuss animal health related matters with their clients. When dealing with an emerging zoonosis, such as Hendra virus (HeV), veterinarians also have a legal responsibility to inform their clients about the associated risks to human health. Here we report on part of a mixed methods study that examined the preparedness of, and difficulties experienced by, veterinarians communicating about HeV-related risks with their clients. METHODS: Phase 1 was an exploratory, qualitative study that consisted of a series of face-to-face, semi-structured interviews with veterinary personnel from Queensland, Australia (2009-10) to identify the barriers to HeV management in equine practices. Phase 2a was a quantitative study that surveyed veterinarians from the same region (2011) and explored the veterinarians' preparedness and willingness to communicate about HeV-related risks, and the reactions of their clients that they experienced. The second study included both multiple choice and open-ended questions. RESULTS: The majority of the participants from Phase 2a (83.1%) declared they had access to a HeV management plan and over half (58.6%) had ready-to-use HeV information available for clients within their practice. Most (87%) reported "always or sometimes" informing clients about HeV-related risks when a horse appeared sick. When HeV was suspected, 58.1% of participants reported their clients were receptive to their safety directives and 24.9% of clients were either initially unreceptive, overwhelmed by fear, or in denial of the associated risks. The thematic analysis of the qualitative data from Phases 1 and 2a uncovered similar themes in relation to HeV-related communication issues experienced by veterinarians: "clients' intent to adhere"; "adherence deemed redundant"; "misunderstanding or denial of risk"; "cost"; "rural culture"; "fear for reputation". The theme of "emotional state of clients" was only identified during Phase 1. CONCLUSION: Warning horse owners about health and safety issues that may affect them when present in a veterinary work environment is a legal requirement for veterinarians. However, emerging zoonoses are unpredictable events that may require a different communication approach. Future training programs addressing veterinary communication skills should take into account the particular issues inherent to managing an emerging zoonosis and emphasise the importance of maintaining human safety. Veterinary communication skills and approaches required when dealing with emerging zoonoses should be further investigated.

Clinical profile and treatment outcomes of advanced neuroendocrine tumours in rural and regional patients: a retrospective study from a regional cancer centre in North Queensland, Australia.

BACKGROUND: Neuroendocrine tumours (NET) arise from neuroendocrine cells, which are widely distributed throughout the body. However, diagnosing NET is difficult due to nonspecific symptoms and the paucity of experience among health professionals. This retrospective study was carried out to improve our understanding about NET. This knowledge can be used for optimal utilisation and distribution of limited resources. AIM: To study the clinical profile, treatment and survival outcomes for advanced NET patients in Australian regional and remote settings. METHODS: We reviewed all adult patients who were diagnosed with NET between 1994 and 2012. Patients' data were extracted from electronic databases of The Townsville Cancer Centre. Remoteness was based on postcodes, with patients stratified as regional or rural North Queensland according to Australian Standard Geographical Classification (ASGC). Overall survival was studied using survival analysis. RESULTS: Data from 79 patients were included in the study. The median age at diagnosis was 60 years. A total of 48 patients (60.8%) was male and 31 (39.2%) female. The majority of the patients lived in rural areas (51, 64%) as compared to residing in regional areas (28, 36%). There were 34 deaths at the study cut-off point. Median overall survival of NET patients in rural areas is significantly less than those living in regional areas (1613 days vs. 2935 days, respectively), P = 0.03. CONCLUSION: Remoteness has an adverse impact on overall survival of NET patients. This outcome may be because of varied access to health services and/or lack of access to specialised scans and medical and surgical expertise.

Using a participatory action research framework to listen to Aboriginal and Torres Strait Islander people in Australia about pandemic influenza.

INTRODUCTION: This article describes the use and effectiveness of the participatory action research (PAR) framework to better understand community members' perceptions and risks of pandemic influenza. In 2009, the H1N1 influenza pandemic affected Indigenous populations more than non-Indigenous populations in Oceania and the Americas. Higher prevalence of comorbidities (diabetes, obesity, asthma and chronic obstructive pulmonary disease) as well as pregnancy in Indigenous communities may have contributed to the higher risks of severe disease. Social disparity, institutionalised racism within health services and differences in access to culturally safe health services have also been reported as contributors to disadvantage and delayed appropriate treatment. METHODS: Given these factors and the subsequent impact they had on Australian Aboriginal and Torres Strait Islander communities, the authors set out to ensure that the Australian national, state and territory pandemic plans adequately reflected the risk status of Aboriginal and Torres Strait Islander peoples and promoted meaningful engagement with communities to mitigate this risk. A national study explored the views of Aboriginal and Torres Strait Islander people and their experiences with H1N1 and used a qualitative PAR framework that was effective in gaining deep understandings from participants. Aboriginal and Torres Strait Islander community-controlled organisations and health services were involved in the implementation, interpretation and monitoring of this project. RESULTS: As a result, important features of the implementation of this PAR framework with Aboriginal and Torres Strait Islander communities and organisations emerged. These features included the importance of working in a multidisciplinary team with Aboriginal and Torres Strait Islander researchers; the complexities and importance of obtaining multi-site human research ethics approval processes; the importance and value of building the research capacity of both experienced and novice researchers in PAR; the need to use localised sampling protocols; and the process of undertaking a collective research process and enacting action research and feedback. CONCLUSIONS: The most effective responses of this project were embedded in pre-existing relationships with individuals within organisations that had been established over a long period of time between Aboriginal medical services and investigators; however, research relationships established specifically for the purposes of the project were less successful because of changes in personnel and organisational support. The participatory approach used in this study has the potential to be applied to vulnerable populations in other countries.

Management of the slowly emerging zoonosis, Hendra virus, by private veterinarians in Queensland, Australia: a qualitative study.

BACKGROUND: Veterinary infection control for the management of Hendra virus (HeV), an emerging zoonosis in Australia, remained suboptimal until 2010 despite 71.4% (5/7) of humans infected with HeV being veterinary personnel or assisting a veterinarian, three of whom died before 2009. The aim of this study was to identify the perceived barriers to veterinary infection control and HeV management in private veterinary practice in Queensland, where the majority of HeV outbreaks have occurred in Australia. RESULTS: Most participants agreed that a number of key factors had contributed to the slow uptake of adequate infection control measures for the management of HeV amongst private veterinarians: a work culture characterised by suboptimal infection control standards and misconceptions about zoonotic risks; a lack of leadership and support from government authorities; the difficulties of managing biosecurity and public health issues from a private workforce perspective; and the slow pattern of emergence of HeV. By 2010, some infection control and HeV management changes had been implemented. Participants interviewed agreed that further improvements remained necessary; but also cautioned that this was a complex process which would require time. CONCLUSION: Private veterinarians and government authorities prior to 2009 were unprepared to handle new slowly emerging zoonoses, which may explain their mismanagement of HeV. Slowly emerging zoonoses may be of low public health significance but of high significance for specialised groups such as veterinarians. Private veterinarians, who are expected to fulfil an active biosecurity and public health role in the frontline management of such emerging zoonoses, need government agencies to better recognise their contribution, to consult with the veterinary profession when devising guidelines for the management of zoonoses and to provide them with greater leadership and support. We propose that specific infection control guidelines for the management of slowly emerging zoonoses in private veterinary settings need to be developed.

"Makes you proud to be black eh?": reflections on meaningful indigenous research participation.

INTRODUCTION: This article outlines the meaningful participation of eight Aboriginal and Torres Strait Islander community members employed as community researchers investigating the impact of pandemic influenza in rural and remote Indigenous communities in Australia. Aboriginal and Torres Strait Islander participation is now a requirement of health research involving Aboriginal and Torres Strait Islander communities. There is a growing literature on the different approaches to such involvement. Fundamental to this literature is an acknowledgement that Indigenous communities are no longer prepared to be research objects for external, mostly non-Indigenous researchers, and demand a role in decisions about what is researched and how it will be researched. In this paper, we describe the protracted process for site identification and recruitment and training of community researchers. We focus on the backgrounds of the Indigenous researchers and their motivations for involvement, and the strengths and challenges posed by Indigenous people researching in their own communities. Throughout the paper our concern is to document how genuine participation and the building of research capacity can occur. DISCUSSION: A key feature of the research was the employment, training and strengthening the capacity of local Aboriginal and Torres Strait Islander community members in the role of community researchers. A series of training workshops were conducted in northern Australia and focussed on qualitative research methods, including data collection, data analysis and writing. The Indigenous researchers collected the community-based data, and worked in partnership with experienced academic researchers in the analysis and compilation of community reports. Parts of those community reports, as well as additional information supplied by the community researchers, forms the basis of this article. As the demand increases for involvement of Indigenous community members as researchers, focus needs to be paid to what constitutes meaningful participation. If active participation in all aspects of the research process is intended, this necessitates close attention to the knowledge and skills required for this to occur at every stage. Building research capacity means not simply equipping local people to undertake research on a particular project, but to have the knowledge and skills to undertake research in other areas. CONCLUSIONS: There are considerable benefits for Indigenous people researching in their own communities. Most important for the community researchers on this project was the sense that they were doing important health work, not just conducting research. Given the persistent gaps between Indigenous and non-Indigenous health, this is perhaps one of the most important contributions of this type of research. Whilst research outcomes are undoubtedly important, in many cases the process used is of greater importance.

Peripheral intravenous catheter insertion and use of ultrasound in patients with difficult intravenous access: Australian patient and practitioner perspectives to inform future implementation strategies.

OBJECTIVE: To understand healthcare worker and patient experience with peripheral intravenous catheter (PIVC) insertion in patients with difficult intravenous access (DIVA) including the use of ultrasound (US). METHODS: Descriptive study using 1-on-1 semi-structured interviews conducted between August 2020 and January 2021. Purposeful sampling was used to recruit healthcare practitioners (HCPs) and patients with DIVA who had PIVC experience. Data were analysed using inductive thematic analysis. Interview data were than mapped to the implementation theory Behaviour Change Wheel to inform implementation strategies. RESULTS: In total 78 interviews (13 patients; 65 HCPs) were completed with respondents from metropolitan (60%), regional (25%) and rural/remote (15%) settings across Australia. Thematic analysis revealed 4 major themes: i) Harmful patient experiences persist, with patient insights not leveraged to effect change; ii) 'Escalation' is just a word on the front lines; iii) Heightened risk of insertion failure without resources and training; and iv) Paving the way forward-'measures need to be in place to prevent failed insertion attempts. Themes were mapped to the behaviour change wheel and implementation strategies developed, these included: staff education, e-health record for DIVA identification, DIVA standard of care and DIVA guidelines to support escalation and ultrasound use. CONCLUSION(S): DIVA patients continue to have poor healthcare experiences with PIVC insertion. There is poor standardisation of DIVA assessment, escalation, US use and clinician education across hospitals. Quality, safety, and education improvement opportunities exist to improve the patient with DIVA experience and prevent traumatic insertions. We identified a number of implementation strategies to support future ultrasound and DIVA pathway implementation.

The dual roles of rural midwives: the potential for role conflict and impact on retention.

Nurses and midwives continue to make up the largest proportion of the health workforce. As a result, shortages of nurses and midwives have a significant impact on the delivery of effective health care. Shortages of nurses and midwives are known to be more pronounced in rural and remote areas where recruitment and retention remain problematic. However, rural nurses are often required to be multi-skilled, which has led to expectations that nurses who are also midwives, are required to work across areas of the hospital to help to address shortages. For midwives this issue is even more problematic as they may actually end up spending a very small percentage of their working day involved in the delivery of maternity care. This workforce strategy has the potential to seriously erode the skills of the midwives. Situations such as this are implicated in attrition of midwives because of the role stress that results when they are required to work in models of care where they experience the constant pull to work between departments and across roles. This paper addresses the requirement for midwives in some rural facilities to work across roles of general nurse and midwife and outlines the issues that arise as a result. In particular, the paper links the concepts of Role Theory to the requirement for midwives to work in dual roles and the potential for role stress to develop.

Patient navigation programs in Alberta, Canada: an environmental scan.

BACKGROUND: Patient navigation is a complex intervention that has garnered substantial interest and investment across Canada. We conducted an environmental scan to understand the landscape of patient navigation programs within the health care system in Alberta, Canada. METHODS: We included patient navigation programs within Alberta Health Services (AHS) and Alberta's Primary Care Networks (PCNs). Key informants were asked in October 2016 to identify existing programs and their corresponding program contacts. These program contacts were invited to complete a telephone-based survey from October 2016 to July 2017, to provide program descriptions and eligibility criteria, and to identify gaps in navigation. Programs were included if they engaged patients on an individual basis, and either facilitated continuity of care or promoted patient and family empowerment. We tabulated results and calculated summary statistics for program characteristics. RESULTS: Ninety-five potentially eligible programs were identified by key informants. The response rate to the study survey was 73% (n = 69). After excluding programs not meeting inclusion criteria, we included a total of 58 programs in the study: 43 AHS programs and 15 PCN programs. Nearly all programs (93%, n = 54) delivered navigation via an individual acting as a navigator. A minority of programs also included nonnavigator components, such as Web-based resources (7%, n = 4) and process or structural changes to facilitate navigation (22%, n = 13). Certain patient subgroups were particularly well-served by patient navigation; these included patients with cancer, substance use disorders or mental health concerns, and pediatric patients. Gaps identified in navigation fell under 4 domains: awareness, resources, geographic distribution and integration. INTERPRETATION: Patient navigation programs are common and have extended beyond cancer care, from which the construct originated; however, gaps include a lack of awareness and inequitable access to the programs. These findings will be of interest to those developing and implementing patient navigation interventions in Alberta and other jurisdictions.

Perspectives on primary care management of obstructive sleep apnea: a qualitative study of patients and health care providers.

STUDY OBJECTIVES: Difficulties in providing timely access to care have prompted interest in primary care delivery models for obstructive sleep apnea (OSA). Sustainable implementation of such models requires codesign with input from key stakeholders. The purpose of this study was to identify patient and provider perspectives on barriers and facilitators to optimal, patient-centered management of OSA in a primary care setting. METHODS: This study was conducted in Alberta, Canada. Data from key stakeholders were collected through an online survey of primary care providers (n = 119), focus groups and interviews with patients living with OSA (n = 28), and workshops with primary care and sleep providers (n = 36). Quantitative survey data were reported using descriptive statistics, and qualitative data were analyzed using an inductive thematic approach. RESULTS: Several barriers were identified, including poor specialist access, variable primary care providers knowledge of OSA, and lack of clarity about provider roles for OSA management. Barriers contributed to patients being poorly informed about OSA, leading them to separate OSA from their overall health and eroding trust in the system. Suggestions for improvement included integration of care providers in a comprehensive model of care, facilitated by improved system navigation and more effective use of technology. Themes were consistent across data collection methods and between stakeholder groups. CONCLUSIONS: Although primary care delivery models may improve access to OSA management, stakeholders identified important challenges in the current system. Innovative models of care, developed with input from patients and providers, may mitigate barriers and support optimal primary care management of OSA.

Suspected systemic calcinosis and calciphylaxis in 5 horses.

Five horses were presented with signs of myopathy along with systemic malaise, hyperfibrinogenemia, hyperphosphatemia, and an elevated calcium phosphorus product (Ca*P). Postmortem findings were consistent with systemic calcinosis, a syndrome of calcium deposition in the tissue of organs including lungs, kidneys, muscle, and heart that has not been previously described in horses.

A Randomized Controlled Trial of an Alternative Care Provider Clinic for Severe Sleep-disordered Breathing.

Rationale: Lack of timely access to diagnosis and treatment of sleep-disordered breathing (SDB) has sparked interest in using nonphysician providers. Previous studies of these alternative care providers (ACPs) excluded patients with more complicated forms of SDB and did not directly explore the impacts of a model incorporating ACPs on healthcare system performance, such as wait times.Objectives: To evaluate the use of ACPs in the management of patients with severe SDB from a clinical and system perspective.Methods: In this noninferiority study, patients with severe SDB (N = 156) were enrolled from October 2014 to July 2016 and randomized to either sleep physician management or management by ACP with same-day sleep physician review. Severe SDB was defined as one of 1) respiratory event index greater than 30/h, 2) mean nocturnal oxygen saturation less than 85%, and 3) arterial carbon dioxide greater than 45 mm Hg with respiratory event index greater than 15/h. The primary outcome was nightly positive airway pressure adherence at 3 months, using a noninferiority margin of 1 hour. Secondary outcomes included sleepiness, quality of life, patient satisfaction, wait times for diagnosis and treatment initiation, and demand for further testing and clinical assessment. Outcomes were evaluated using modified intention-to-treat and per-protocol analyses.Results: Care delivery using ACPs was indeterminate compared with sleep physician care with respect to treatment adherence, because the 95% confidence interval included the noninferiority margin of 1 hour (mean difference, -0.5 [-1.49 to 0.49] h). Patients in the ACP arm reported greater improvements in sleepiness and quality of life; wait times were shorter for initial assessment (28%) and treatment initiation (18%). There was no difference in demand for sleep testing or clinical follow-up. Per-protocol analysis revealed similar results.Conclusions: Management of severe SDB using ACPs was indeterminate compared with sleep physician care. The small decrease in adherence in the ACP arm was balanced by benefits in patient-reported outcomes and reduction in wait times. In systems with unacceptably long wait times for SDB diagnosis and treatment, a small decrease in treatment adherence, as was observed in this study, may be an acceptable trade-off to improve access to care for patients with severe SDB.Clinical trial registered with www.clinicaltrials.gov (NCT02191085).

Biomechanical comparison of six suture configurations using a large diameter polyester prosthesis in the muscular process of the equine arytenoid cartilage.

OBJECTIVE: To compare biomechanical properties of 6 suture configurations using a large diameter polyester prosthesis in the muscular process (MP) of the arytenoid cartilage and to determine failure mode. STUDY DESIGN: Experimental study. SAMPLE POPULATION: Cadaveric equine larynges (n=121). METHODS: Suture configurations (4 single, 2 double) were inserted, and then constructs were tested in a single-cycle to failure at a 100 mm/min distraction. Load deformation curves were generated to assess the biomechanical properties of each construct. A 1-way ANOVA was used to compare the mean differences in construct failure force, cricoarytenoid joint (CAJ) disarticulation force, and energy stored at failure. A 2-sample t-test was used to compare single versus double suture patterns and a Fisher's exact test was used to compare failure mode. RESULTS: Both construct and CAJ failure force were significantly greater (P<.05) for double suture patterns compared with single suture patterns; however, there were no significant differences in energy stored at construct failure. Failure at the MP accounted for >or=50% of construct failures for 3 of the single suture patterns and 1 of the double suture patterns tested. The remaining 2 patterns had an increased frequency of clamp failures as well as failure of the cricoid cartilage. CONCLUSIONS: Sutures that sufficiently engage the spine of the MP alone or in conjunction with a second suture were found to be biomechanically superior. CLINICAL RELEVANCE: Engaging the spine of the MP appears to result in the most biomechanically sound laryngeal construct.

Breaking Bad News in Ethnic Settings: Perspectives of Patients and Families in Northern Sri Lanka.

PURPOSE: The discussion of a cancer diagnosis and prognosis often is difficult. This study explored the expectations of Tamil-speaking patients with cancer and their families with respect to receiving their cancer diagnosis in northern Sri Lanka. METHODS: This exploratory, descriptive, qualitative study used semistructured interviews. RESULTS: Thematic analysis identified two major themes: communication and information seeking. The findings illustrate a discrepancy between patient preference for direct disclosure of the diagnosis and that of families. Ninety-five percent of patients wanted medical staff to disclose their cancer diagnosis, whereas only 45% of family members believed that the diagnosis should be disclosed to the patient rather than to the family. CONCLUSION: Although patients and their family members' views and expectations of the disclosure of diagnosis and prognosis differ, a majority of patients want to be told directly about their diagnosis rather than to learn of it from a relative. The findings are similar to the literature on other ethnic groups from Sri Lanka and studies from English-speaking developed countries. Therefore, the main questions are how to educate families and physicians about the benefits of open disclosure to patients and how to change culture. Results of this study along with a previous study call for the development of strategies and guidelines to improve societal views, educate patients and families, and train health professionals in the area of breaking bad news and discussing prognosis in the Sri Lankan setting.