Life journeys with advanced breast cancer in Mauritania : A mixed methods case study

Background: Breast cancer is the most common cancer for women, globally. Social, religious and healthcare contexts have been shown to influence women’s experiences of advanced breast cancer; however, research has tended to focus on resource-rich nations. There is limited research from low-resource contexts, and little is known on the experiences of Arab, Muslim and African women with advanced breast cancer. Aim: To explore and understand the experiences of advanced breast cancer in the Islamic Republic of Mauritania, West Africa. Methods: Using a constructivist Stakian multi-case study approach, eight cases were constructed around women (n=8) with advanced breast cancer, family members (n=10) and health professionals (n=9). Data were collected longitudinally (up to nine months per case) and consisted of interviews, audio-journals, a patient reported outcome measurement scale and a performance status scale. Withincase and cross-case analysis was undertaken, with thematic analysis of qualitative data. Findings: Three key themes were identified: 1. Destiny, 2. Patience & Acceptance and 3. Journeying in search of a cure. Mauritanian women appreciate that Allah is all powerful and maintains control over their destinies and their breast cancer. A fear of causing offence to Allah influences how they express negative experiences of breast cancer and its treatments. The women’s access to information and treatment is controlled by health professionals and families. Women are, therefore, required to use their own observations and interpretations to understand their breast cancer and empower their pursuit of treatment and a cure. Conclusion: Maure women’s experiences of advanced breast cancer in Mauritania are influenced by power imbalances. Allah is all-powerful. Families and health professionals exert power over Maure women’s access to information, healthcare decisions and how they express negative experiences. This thesis demonstrates that Maure women are cognisant of these challenges and, either, accept them as reality or attempt to work around them

Experiences of breast cancer in Arab countries:a thematic synthesis

Background Breast cancer is the most common cancer in women globally. Its negative effects on a woman's quality of life are related to the individual and socio-cultural factors. This review aimed to identify and synthesise the reported experiences and quality of life of women with breast cancer in Arab countries. Methods PubMed, Embase, Web of Science, SCOPUS, PsychInfo, CINAHL, Allied and Complementary Medicine Database, and Index Medicus for the Eastern Mediterranean Region were searched for articles published from start to March 2019 using PRISMA guidelines. These searches were complimented by citation tracking and hand searching of relevant journals. A thematic synthesis was carried out on the 'findings/results' sections from the identified papers. Results Of 5228 records identified, 19 were included in the review which represented 401 women from 11 Arab countries. All used qualitative methods of data collection to produce rich descriptions of experiences. Thematic synthesis of the extracted data identified three major themes, Perceptions and reactions, Coping or enduring and Changing roles. Conclusions This review provides a rich description of the reported quality of life and experiences of women with breast cancer in Arab countries. These are influenced by the women's and society's views of cancer, the women's role in society and family, religious faith and the healthcare context and access to treatment choices and information

Place of death in the Czech Republic and Slovakia:a population based comparative study using death certificates data

Place of death represents an important indicator for end-of-life care policy making and is related to the quality of life of patients and their families. The aim of the paper is to analyse the place of death in the Czech Republic and Slovakia in 2011. Research questions were focused on factors influencing the place of death and specifically the likelihood of dying at home

Activity and advanced cancer:A grounded theory

Background: Cancer-related fatigue and loss of physical functioning are distressing symptoms which negatively impact the quality of life of people with advanced cancer. Physical activity has been shown to have positive effects on these symptoms in early-stage cancer, but previous research demonstrated an incongruence between people with advanced cancer’s expressed interest and actual participation in a physical activity intervention. Aim: To gain an in-depth understanding of the experience of activity and quality of life in people with advanced cancer, using a classic grounded theory approach. Design: Through the post-positivist lens of subtle realism, and informed by classic grounded theory methods, a two-phase, cross-sectional, qualitative study was conducted. For 7 days duration, participants wore an activPAL™ activity monitor and completed a daily record sheet, which were then used as qualitative probes for face-to-face, semi-structured interviews. Setting/participants: A total of 15 people with advanced cancer, aged 18 years or older, and with a median survival of 100 days from time of study consent, were recruited from an outpatient department of a tertiary cancer centre in Alberta, Canada. Findings: Maintaining their responsibilities, no matter how small, was the prime motive for participants’ behaviour. For people with advanced cancer, the minimum level of responsibility was dynamic and unique. It was achieved through a multifaceted interaction between the perceived benefits, prevailing conditions and mechanisms. Conclusion: This grounded theory enables understanding of activity as a mechanism through which responsibility is managed and may inform future behavioural interventions in people with advanced cancer

Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care:Recommendations based on a methodological systematic review

BACKGROUND: The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. AIM: To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care. DESIGN: A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE. DATA SOURCES: Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting. RESULTS: A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a 'round' or a 'modified Delphi study'. CONCLUSION: Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed

A grounded theory approach to physical activity and advanced cancer:a qualitative study protocol

Background: Physical activity has demonstrated benefits in cancer-related fatigue and physical functioning in early-stage cancer patients; however, the role of physical activity at the end stage of cancer has not been established. To challenge positivist–empiricist assumptions, I am seeking to develop a new theoretical framework that is grounded in the advanced cancer patient’s experience of activity. Aim: To gain an in-depth understanding of the experience of activity and quality of life in advanced cancer patients. Objectives: (1) To explore the meaning of activity for advanced cancer patients in the context of their day-to-day life, (2) to elicit advanced cancer patients’ perceptions of activity with respect to their quality of life, and (3) to elicit advanced cancer patients’ views of barriers and facilitators to activity in the context of their day-to-day life. Study Design: A two-phase, crosssectional, qualitative study will be conducted through the postpositivist lens of subtle realism and informed by the principles of grounded theory methods. Study Methods: Advanced cancer patients will be recruited through the outpatient department of a tertiary cancer center. For Phase 1, participants will wear an activPAL™ activity monitor and fill out a daily record sheet for 7-day duration. For Phase 2, the activity monitor output and daily record sheets will be used as qualitative probes for face-to-face, semistructured interviews. Concurrent coding, constant comparative analysis, and theoretical sampling will continue with the aim of achieving as close as possible to theoretical saturation. Ethics and Discussion: Ethical and scientific approval will be obtained by all local institutional review boards prior to study commencement. The findings will generate new mid-level theory about the experience of activity and quality of life in advanced cancer patients and aid in the development of a new theoretical framework for designing interventions for this population

Landfast ice controls on turbulence in Antarctic coastal seas

Knowledge of the ocean surface layer beneath Antarctic landfast ice is sparse. In this article surface layer turbulent and fine structure are quantified with and without landfast ice in the same West Antarctic Peninsula location. Landfast ice reduced turbulence levels locally to an order of magnitude less than ice-free values, and near-inertial energy and sub-inertial tidal energy levels to less than half their ice-free values. Vertical turbulent heat and nutrient fluxes were, respectively, 6 and 10 times greater than previously estimated. Under-ice tidal energy dissipation over the entire Antarctic continental shelf due to seasonal landfast ice cover is estimated at 788 MW. The total rate of wind-generated turbulence in the surface ocean is greatly reduced by the presence of seasonal landfast ice to an average of 14% of the ice-free value, but with large sectoral variations. Counter-intuitively, however, tides and wind contribute approximately equally to the turbulent kinetic energy budget of the upper ocean between the Antarctic coastline and the maximal landfast ice extent, with large sectoral variations, attributed to geographic variations in the strength of the barotropic tide

Exploring the experience of recurrence with advanced cancer for people who perceived themselves to be cancer free:a grounded theory study

Purpose Advances in cancer treatment have led to longer cancer-free periods and overall survival. This study aimed to understand patients’ experiences of transitioning out of a state of believing to be cancer free into incurable recurrence with advanced disease. Methods Using constructivist grounded theory with in-depth interviews patients (n = 15) with solid tumors from a major US cancer center participated. Theoretical sampling enabled concepts to be developed until theme saturation. Constant comparative analysis used initial and focused coding to develop themes and concepts to describe this specific period from extended time cancer free and transition to advanced incurable disease. Results Three interrelated concepts were identified: reluctant acceptance, seeking survival through continuous treatment, and hope in the face of an uncertain future. A conceptual model of the experience was developed encompassing anger and sadness, at initial recurrence, to reluctant acceptance, and, finally, a cycle of seeking continuous treatment to prolong life leading to a sense of hope in the face of an uncertain future. Conclusion The cycle between treatment and hope creates a state of personal equilibrium, which provides insights into the importance of treatment for this population. This study provides direction for future research to understand the expectations of people experiencing advanced cancer recurrence. Implications for cancer survivors Many cancer survivors live with advanced cancer. Assessing their needs as they transition from survivor with no disease to survivor with advanced disease requires a new conceptualization of the experience which recognizes expectations and priorities for care of this patient group

Understanding key mechanisms of successfully leading integrated team-based services in health and social care : protocol for a realist synthesis

Introduction As systems of health and social care in England move towards more integrated and collaborative models, leaders will need different skills than their predecessors to enable system leadership, building partnerships and working across organisations and sectors. There is little understanding of what the mechanisms for effective leadership across integrated health and social care systems might be, the contexts that influence good leadership, or the nature of the resulting outcomes. This review aims to identify, refine and test programme theories of leadership of integrated team-based services in health and social care, exploring what works, for whom and in what circumstances. Methods and analysis This study uses a realist synthesis approach, following RAMESES guidelines, supported by stakeholder consultation. Stage 1 will develop initial programme theories about leadership of integrated health and social care based on a review of the scientific and grey literature and a stakeholder consultation workshop. Stage 2 will involve focused searching of empirical literature, data extraction and synthesis to refine the initial programme theories and identify relationships between identified contexts, mechanisms and outcomes. A second stakeholder event will guide the focus of the review. Stage 3 will further refine and interrogate the theories testing them against substantive theory on leadership of complex systems and through the experiences and expertise of the stakeholder group. Ethics and dissemination Our study does not require ethics committee approval. This research will contribute to building an in-depth understanding of what aspects of leadership of integrated team-based services work, for whom and in what circumstances. It will identify the professional development needs of leaders and provide recommendations about optimal organisational and interorganisational structures and processes that support effective leadership in integrated health and social care systems. Findings will be disseminated through peer-reviewed journal publications, conference presentations and formal and informal reports. PROSPERO registration number CRD4201811929

A philosophical critique of the UK’s National Institute for Health and Care Excellence guideline ‘Palliative care for adults: strong opioids for pain relief’

The National Institute for Health and Care Excellence (NICE) promotes evidence-based medicine throughout contemporary health care. Its guidelines are employed in the United Kingdom and elsewhere, influencing the type and quality of health care provided. NICE considers a range of evidence in the process of creating guidelines; however, the research accepted as evidence greatly relies on positivist methodologies. At times, it is unnecessarily restricted to quantitative methods of data collection. Using the Clinical Guideline 140, opioids in palliative care, as an example, it is demonstrated that the research accepted as evidence is unable to provide answers to complex problems. In addition, several inherent biases are discussed, such as age inequality and pharmaceutical company influence. In order to provide coherent and useful guidelines relevant to complex problems in a real world setting, NICE must move away from focusing on data from randomised controlled trials. Its epistemological foundation must be questioned, paving the way for alternative research paradigms to be considered as evidence and thereby enriching subsequent guidelines