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Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to different patterns of multimorbidity (the occurrence of two or more chronic conditions) than experienced in high income settings. These adversely affect health outcomes, increase patients' perceived burden of treatment, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring burden of treatment among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a comparative qualitative study to examine the interaction between individuals' treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2021. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs. [ABSTRACT FROM AUTHOR]

This paper reflects on the value of diary methods in the context of a qualitative, longitudinal narrative inquiry exploring the higher education decision-making of further education students in England. Event-based diaries were used alongside interviews and focus groups over a 14-month period to gain in-depth insights into the reasons and influences informing their decision-making trajectories. I explore the challenges, successful approaches and advantages of employing diary methods with young people in this context. Challenges consisted of maintaining participant engagement, which was overcome by combining methods and incorporating a reactive co-participatory element. Yet, a number of advantages emerged from participants' engagement with diary keeping which enhanced the richness of the data; this inspired deeper reflections on decision-making and influences and provided a private space for participants to disclose personal difficulties that could not be obtained via interviews. [ABSTRACT FROM AUTHOR]

The use of vignettes in research and education is well documented. Documentation of how vignettes are developed and content validity is established, however, are rare. The purpose of this paper is to describe a method for development and establishing content validity of vignettes that can be used to assess student performance and research participant outcomes. This three-phase method was designed to validate seven vignettes for a future research project. Content validity index survey and expert panel interviews were used to inform improvements in validity. Findings showed that clinical vignettes were improved with respect to content relevance (from 0.93 to 0.96) and importance (from 0.68 to 0.93). Developing validated vignettes is essential when used to measure outcomes in education and in research. This three-phase method of vignette development and validation is feasible and effective in improving content validity of vignettes and can be used in other education and research projects. [ABSTRACT FROM AUTHOR]

Background: The growing burden of life-threatening illnesses and advancements in care interventions call for the intentional integration of palliative care services into existing care systems. The absence of active, functioning palliative care services in most hospitals in Ghana is a major concern. This study explored the factors influencing the integration of palliative care services in one of such institutions. Objectives: The aim of the study was to explore the institutional drivers of palliative care integration in a military health facility. Design: Exploratory qualitative study. Methods: We employed a qualitative exploratory study design situated within a constructivist paradigm. A purposive sampling method was used to select and interview 11 healthcare professionals. A semistructured interview was used to conduct face-to-face, in-depth interviews with participants between April and May 2022. A thematic data analysis was done based on the Braun and Clarke analysis process with the aid of QSR NVivo-12. Results: The six themes that describe the institutional driving factors for integrating palliative care services were cognitive restructuring, supportive logistics and infrastructure, staffing, healthcare professional skills, institutional policies and priorities, and utilization of focal persons. It was observed that a paradigm shift in the mindset of healthcare professionals and administrators was a major driver that would determine the integration of palliative care services. A cognitive restructuring will facilitate a more aggressive integration of palliative care services because logistics, staffing, and medication access will be prioritized. Conclusion: Institutions have the responsibility of aligning with the WHO policy on palliative care service access and must invest in training, staffing, prioritizing palliative care needs and policies, procurement of essential drugs, and the provision of logistics and supportive infrastructure to scale up the implementation of palliative care services. [ABSTRACT FROM AUTHOR]

Objective : To describe the process of developing a craniosynostosis decision aid. Design : We conducted a mixed-methods exploratory study between August 2019 and March 2020 to develop a decision aid about surgical treatment for single suture craniosynostosis. Setting : A single tertiary care academic children's hospital. Participants : The decision aid development team consisted of surgeons, research fellows, a clinical nurse practitioner, clinical researchers with expertise in decision science, and a university-affiliated design school. Qualitative interviews (N = 5) were performed with families, clinicians (N = 2), and a helmeting orthotist to provide feedback on decision aid content, format, and usability. Interventions : After cycles of revisions and iterations, 3 related decision aids were designed and approved by the marketing arm of our institution. Distinct booklets were created to enable focused discussion of treatment options for the 3 major types of single suture craniosynostosis (sagittal, metopic, unicoronal). Results : Three decision aids representing the 3 most common forms of single suture craniosynostosis were developed. Clinicians found the decision aids could help facilitate discussions about families' treatment preferences, goals, and concerns. Conclusions : We developed a customizable decision aid for single suture craniosynostosis treatment options. This tool lays the foundation for shared decision-making by assessing family preferences and providing clear, concise, and credible information regarding surgical treatment. Future research can evaluate this tool's impact on patient–clinician discussions about families' goals and preferences for treatment. [ABSTRACT FROM AUTHOR]

Transitional care to cardiac rehabilitation during the pandemic was a complex process for older adults, with additional challenges for decision-making and participation. This study aimed to explore the perspectives of older adults and health providers on transitional care from the hospital to cardiac rehabilitation, focusing on patient participation in decision-making. A qualitative exploratory design was used. Semi-structured interviews were conducted with 15 older adults and 6 healthcare providers. Document analysis and reflexive journaling were used to support triangulation of findings. Six themes emerged from the data, related to insufficient follow-up from providers, the importance of patients' emotional and psychological health and the support provided by family members, the need for information tailored to patients' needs and spaces for participation in decision-making, as well as challenges during COVID-19, including delayed medical procedures, rushed discharge and isolating hospital stays. The findings of this study indicated a number of potential gaps in the provision of transitional care services as reported by older adults who had a cardiovascular event, often during the first few weeks post hospital discharge. [ABSTRACT FROM AUTHOR]

The burden of health inequities borne by Indigenous peoples can be overwhelming, especially when mothers and newborns' lives are at stake and health services seem slow to invest in responsiveness. In Aotearoa (New Zealand), urgent action is required to eliminate persistent systemic inequities for Māori (Indigenous) whānau (family collectives that extend beyond the household). This Kaupapa Māori (by Māori, for Māori) qualitative study aimed to explore the views of health practitioners identified as champions by whānau of preterm Māori infants. Ten health practitioners were interviewed and asked about their involvement with the whānau, their role in explanations and communication, and their thoughts on whānau coping. Interview data were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: working together in partnership, a problem shared is a problem halved, and sacred space. Collaboration between health practitioners and with whānau was important to the champions and central to their goal of enabling whānau autonomy. This was built on a foundation of connectivity, relationships, and a full appreciation that childbirth is a sacred time that is potentially disrupted when an infant is born prematurely. The values- and relationship-based practices of these champions protected and uplifted whānau. They showed that health practitioners have important roles in both the elimination of inequities and the sustaining of Māori self-determination. This championship is an exemplar of what culturally safe care looks like in day-to-day practice with Māori and is a standard that other health practitioners should be held to. [ABSTRACT FROM AUTHOR]

Background: Cardiopulmonary resuscitation and subsequent care are subject to various ethical and legal issues. Few studies have addressed ethical and legal issues in post-resuscitation care. Objective: To explore nurses' experiences of ethical and legal issues in post-resuscitation care. Research design: This qualitative study adopted an exploratory descriptive qualitative design using conventional content analysis. Participants and research context: In-depth, semi-structured interviews were conducted in three educational hospital centers in northwestern Iran. Using purposive sampling, 17 nurses participated. Data were analyzed by conventional content analysis. Ethical considerations: The study was approved by Research Ethics Committees at Tabriz University of Medical Sciences. Participation was voluntary and written informed consent was obtained. For each interview, the ethical principles including data confidentiality and social distance were respected. Findings: Five main categories emerged: Pressure to provide unprincipled care, unprofessional interactions, ignoring the patient, falsifying documents, and specific ethical challenges. Pressures in the post-resuscitation period can cause nurses to provide care that is not consistent with guidelines, and to avoid communicating with physicians, patients and their families. Patients can also be labeled negatively, with early judgments made about their condition. Medical records can be written in a way to indicate that all necessary care has been provided. Disclosure, withdrawing, and withholding of therapy were also specific important ethical challenges in the field of post-resuscitation care. Conclusion: There are many ethical and legal issues in post-resuscitation care. Developing evidence-based guidelines and training staff to provide ethical care can help to reduce these challenges. [ABSTRACT FROM AUTHOR]

While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners—family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials. [ABSTRACT FROM AUTHOR]

Background: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. Aim: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. Design: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. Setting/participants: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. Findings: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. Conclusions: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making. [ABSTRACT FROM AUTHOR]

Context: Some patients in palliative care units request euthanasia regardless of legislation. Although studies have explored the reasons for these requests, little is known about the subjective, relational, and contextual repercussions for the patient. Objectives: The aim of this study is to understand the purpose of euthanasia requests from the patient's viewpoint and their personal and practical impact. Methods: We conducted in-depth interviews with patients requesting euthanasia, their family members, and health care providers in 11 French palliative care units. A thematic analysis of the data was performed. Results: In total, 18 patients were interviewed within 48 h of the request being made; 1 week later, 9 patients were interviewed again. Five main themes emerged: assuming the possibility of transgressing the forbidden, a call for unbearable suffering to be recognized, encouragement to change clinical practice, reclaiming a sense of freedom over medical constraints, and imagining a desirable future for oneself. Conclusions: A request for euthanasia appears to be a willful means to remove oneself from the impasse of an existence paralyzed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients' sense of autonomy. Investigating the relationship between the evolution of euthanasia requests within the palliative care setting could be beneficial. It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion. [ABSTRACT FROM AUTHOR]

Background: More than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment. Aim: To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers. Design: Qualitative thematic analysis of semi-structured interviews. Participants: Forty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto (n = 22) were interviewed in person or by phone. Participants included physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health professionals (n = 4). Results: Qualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions. Conclusion: Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care. [ABSTRACT FROM AUTHOR]

Summary: This article reports the results of an exploratory comparative study that investigated errors made by social work practitioners. Two groups of social workers, one in Italy and one in Mainland China, answered questions about the causes and effects of mistakes, professional errors and reactions to errors committed by their colleagues, and the influence of intuition on the decision-making process that generates mistakes and errors of professional judgement. Findings: The most salient differences between the Italian and Chinese respondents related to their willingness to talk about their mistakes and their confidence in the training received. A longer social work tradition in Italy helps practitioners in that country to feel stronger and to engage in a reflective learning process rather than defensive actions. As members of a new and not yet fully recognized profession, social workers in Mainland China are more likely to blame external circumstances for negative outcomes. Both groups shared the same positive consideration of intuition and the risk of losing service users' trust. Applications: The purpose of the article is to foster better understanding of errors and mistakes in social work, as well as more open discussion and reflection on social work practice and how to prevent negative outcomes. [ABSTRACT FROM AUTHOR]