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Background: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 and amended in 2021. At the time that this study was conducted, the federal government was considering expanding the eligibility criteria to include patients whose death was not reasonably foreseeable. The purpose of this study was to better understand rural healthcare professionals' experiences with assisted dying set against the backdrop of legislative expansion. Methods: A qualitative exploratory study was undertaken with general rural practice physicians, nurse practitioners, registered nurses, ethicists, patients, and patient families in rural Southern Alberta, Canada. For this paper, data from 18 audio-recorded and transcribed semi-structured interviews with healthcare professionals were analyzed using thematic analysis. Categories and patterns of shared meaning that linked to an overarching theme were identified. Results: Between the binary positions of full support for and conscientious objection to assisted dying, rural healthcare professionals' decisions to participate in MAiD was based on their moral convictions, various contextual factors, and their participation thresholds. Factors including patient suffering; personal and professional values and beliefs; relationships with colleagues, patients and family, and community; and changing MAiD policy and legislation created nuances that informed their decision-making. Conclusions: The interplay of multiple factors and their degree of influence on healthcare professionals' decision-making create multiple decision points between full support for and participation in MAiD processes and complete opposition and/or abstention. Moreover, our findings suggest evolving policy and legislation have the potential to increase rural healthcare professionals' uncertainty and level of discomfort in providing services. We propose that the binary language typically used in the MAiD discourse be reframed to reflect that decision-making processes and actions are often fluid and situational. [ABSTRACT FROM AUTHOR]

Background: Advanced cancer patients with good Eastern Cooperative Oncology Group (ECOG) performance status (score 0–1) are underrepresented in current qualitative reports compared with their dying counterparts. Aim: To explore the experiences and care needs of advanced cancer patients with good ECOG. Design: A qualitative phenomenological approach using semi-structured interview was employed. Data was analyzed using the Colaizzi's method. Setting/Participants: Purposive sample of terminal solid cancer patients on palliative care aged 18–70 years with a 0–1 ECOG score were recruited from a tertiary general hospital. Results: Sixteen participants were interviewed. Seven themes were generated from the transcripts, including experiencing no or mild symptoms; independence in self-care, decision-making, and financial capacity; prioritization of cancer growth suppression over symptom management; financial concerns; hope for prognosis and life; reluctance to discuss death and after-death arrangements; and use of complementary and alternative medicine (CAM) and religious coping. Conclusions: Advanced cancer patients with good ECOG have distinct experiences and care needs from their dying counterparts. They tend to experience no or mild symptoms, demonstrate a strong sense of independence, and prioritize cancer suppression over symptom management. Financial concerns were common and impact their care-related decision-making. Though being hopeful for their prognosis and life, many are reluctant to discuss death and after-death arrangements. Many Chinese patients use herbal medicine as a CAM modality but need improved awareness of and accessibility to treatment options. Healthcare professionals and policy-makers should recognize their unique experiences and needs when tailoring care strategies and policies. Key statements: What is already known about the topic? • Even in their advanced stage, cancer patients with good ECOG performance status are capable of self-care and less reliant on care provided by other. • Existing qualitative research mainly focuses on advanced cancer patients with poor ECOG, emphasizing pain management, emotional distress, and palliative care. What this paper adds? • Our findings reveal distinct experiences and care needs of advanced cancer patients with good ECOG performance status from their dying counterparts. Implications for practice, theory or policy. • Healthcare professionals should recognize and address the patient group's distinct needs. • Future research should further investigate their symptom trajectory, influencing factors, and care needs to fill the gap in their cancer journey. • Policy-makers should develop tailored policies that consider good ECOG performance status. [ABSTRACT FROM AUTHOR]

Background: While there is extensive published evidence regarding the effectiveness of the Care Group Approach in promoting community-wide health behavior change, there is no published evidence regarding its empowering effect on its participants. Our study aimed to understand if the Care Group Approach as applied in the Curamericas/Guatemala Maternal and Child Health Project in isolated rural mountainous communities in Guatemala produced evidence of empowerment among the female participants. This is the seventh of 10 papers describing the expanded Census-Based, Impact-Oriented (CBIO+) Approach in improving the health and well-being of mothers and children in the rural highlands of the Department of Huehuetenango, Guatemala. Methods: We conducted semi-structured individual and group interviews with 96 female Care Group participants –including Level-1 Care Group Promoters, Care Group Volunteers, and Self-Help Group participants. The participants were from six communities – two from each of the three municipalities making up the Project Area. Data were analyzed both using deductive thematic and by exploring the following social constructs: perceived social status, self-efficacy, decision-making autonomy, and formation of social capital. Results: The findings supported the hypothesis that Care Group participation was an empowering process. The primary themes that emerged included increased respect accorded to women in the community, women's willingness and ability to make decisions and their confidence in making those decisions, and the development of stronger bonds among Care Group members, with other community members, and with community leaders. Conclusion: Through increased theoretical and practical knowledge about important maternal and child health matters and through the social experience of obtaining this knowledge and sharing it with other community members, participation in the Care Group Approach empowered participants to make positive health behavior changes for themselves and for their children and families. This, in turn, led many participants to become more engaged in community activities for improved health and beyond, thereby enhancing social capital in the community. We conclude that the Care Group Approach, as applied in this setting, has made it possible for marginalized indigenous women living in a male-dominated society to become more empowered. [ABSTRACT FROM AUTHOR]

Background: HIV and sub-optimal infant feeding practices remain important threats to child growth, development, and survival in low- and middle-income countries. To our knowledge, few studies have explored health service users' perspective of infant feeding in the context of WHO Option B+ policy to prevent vertical HIV transmission (PMTCT). This paper is a sub-analysis of qualitative data from a mixed-methods multi-level process evaluation of Option B+ implementation in South Africa (SA). In this study we explored health facility users' infant feeding knowledge, perceptions, and practices one year after SA adopted the 2016 updated World Health Organization prevention of mother-to-child transmission of HIV Option B+ infant feeding guidelines. Methods: Nineteen focus group discussions (FGDs) were held with six groups of men and women whose infants were aged < 6 months. Participants were attending randomly selected primary health care facilities within six purposively selected priority districts. The six groups included in the FGDs were: (i) adolescent girls and young women living with HIV (WHIV), (ii) adolescent girls and young women not living with HIV (WNHIV), (iii) older postnatal WHIV (iv) older postnatal WNHIV (v) pregnant women, and (vi) men. Data collection took place between April and December 2018. Data analysis involved coding and thematic framework analysis. Results: Women and men have suboptimal knowledge of the recommended breastfeeding duration and exclusive breastfeeding, especially for HIV-exposed infants. Most women received sub-optimal infant feeding counselling and mixed messages from health care workers. Fewer WHIV initiated breastfeeding at birth compared to WNHIV. Most parents believed that HIV-exposed infants should be breastfed for 6 months and many postnatal women on antiretroviral drugs and younger mothers lacked confidence to breastfeed beyond 6 months. Mixed feeding was predominant among all women due to individual, family, and socio-structural barriers. Many men were supportive on infant feeding; however, they lacked the appropriate information and skills to influence their partners' infant feeding decisions. Conclusions: Differences in breastfeeding practices between WHIV and WNHIV are highly influenced by the lack of knowledge of infant feeding policy recommendations. Multiple-level factors deter many mothers from adhering to recommended guidelines. Appropriate ongoing infant feeding counselling and breastfeeding support are required for women and their partners. [ABSTRACT FROM AUTHOR]

Background: Improving quality of palliative and end of life care in older people's care homes is essential. Increasing numbers of people die in these settings, yet access to high quality palliative care is not routinely provided. While evidence for models of care are growing, there remains little insight regarding how to translate evidence-based models into practice. Palliative Care Needs Rounds (hereafter Needs Rounds) have a robust evidence base, for providing palliative care in care homes, reducing resident hospitalisations, improving residents' quality of death, and increasing staff confidence in caring for dying residents. This study aimed to identify and describe the context and mechanisms of change that facilitate implementation of Needs Rounds in care homes, and enable other services to reap the benefits of the Needs Rounds approach to care provision. Methods: Qualitative interviews, embedded within a large randomised control trial, were conducted with a purposive sample of 21 staff from 11 care homes using Needs Rounds. The sample included managers, nurses, and care assistants. Staff participated in individual or dyadic semi-structured interviews. Implementation science frameworks and thematic analysis were used to interpret and analyse the data. Results: Contextual factors affecting implementation included facility preparedness for change, leadership, staff knowledge and skills, and organisational policies. Mechanisms of change that facilitated implementation included staff as facilitators, identifying and triaging residents, strategizing knowledge exchange, and changing clinical approaches to care. Care home staff also identified planning and documentation, and shifts in communication. The outcomes reported by staff suggest reductions in hospitalisations and problematic symptoms for residents, improved staff skills and confidence in caring for residents in their last months, weeks and days of life. Conclusions: The significance of this paper is in offering care homes detailed insights into service contexts and mechanisms of change that will enable them to reap the benefits of Needs Rounds in their own services. The paper thus will support the implementation of an approach to care that has a robust evidence base, for a population under-served by specialist palliative care. Trial registration: ACTRN12617000080325. [ABSTRACT FROM AUTHOR]

Background: Intolerable suffering is a common eligibility requirement for persons requesting assisted death, and although suffering has received philosophic attention for millennia, only recently has it been the focus of empirical inquiry. Robust theoretical knowledge about suffering is critically important as modern healthcare provides persons with different options at end-of-life to relieve suffering. The purpose of this paper is to present findings specific to the understanding and application of suffering in the context of MAID from nurses' perspectives. Methods: A longitudinal qualitative descriptive study using semi-structured telephone interviews. Inductive analysis was used to construct a thematic account. The study received ethical approval and all participants provided written consent. Results: Fifty nurses and nurse practitioners from across Canada were interviewed. Participants described the suffering of dying and provided insights into the difficulties of treating existential suffering and the iatrogenic suffering patients experienced from long contact with the healthcare system. They shared perceptions of the suffering that leads to a request for MAID that included the unknown of dying, a desire for predictability, and the loss of dignity. Eliciting the suffering story was an essential part of nursing practice. Knowledge of the story allowed participants to find the balance between believing that suffering is whatever the persons says it is, while making sure that the MAID procedure was for the right person, for the right reason, at the right time. Participants perceived that the MAID process itself caused suffering that resulted from the complexity of decision-making, the chances of being deemed ineligible, and the heighted work of the tasks of dying. Conclusions: Healthcare providers involved in MAID must be critically reflective about the suffering histories they bring to the clinical encounter, particularly iatrogenic suffering. Further, eliciting the suffering stories of persons requesting MAID requires a high degree of skill; those involved in the assessment process must have the time and competency to do this important role well. The nature of suffering that patients and family encounter as they enter the contemplation, assessment, and provision of MAID requires further research to understand it better and develop best practices. [ABSTRACT FROM AUTHOR]

Background: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. Results: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP. Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers. [ABSTRACT FROM AUTHOR]

Background: Pain is often poorly managed in people who have a dementia. Little is known about how this patient population is managed in hospital, with research to date focused mainly on care homes. This study aimed to investigate how pain is recognised, assessed and managed in patients with dementia in a range of acute hospital wards, to inform the development of a decision support tool to improve pain management for this group.Methods: A qualitative, multi-site exploratory case study. Data were collected in four hospitals in England and Scotland. Methods included non-participant observations, audits of patient records, semi-structured interviews with staff and carers, and analysis of hospital ward documents. Thematic analysis was performed through the lens of decision making theory.Results: Staff generally relied on patients' self-report of pain. For patients with dementia, however, communication difficulties experienced because of their condition, the organisational context, and time frames of staff interactions, hindered patients' ability to provide staff with information about their pain experience. This potentially undermined the trials of medications used to provide pain relief to each patient and assessments of their responses to these treatments. Furthermore, given the multidisciplinary environment, a patient's communication about their pain involved several members of staff, each having to make sense of the patient's pain as in an 'overall picture'. Information about patients' pain, elicited in different ways, at different times and by different health care staff, was fragmented in paper-based documentation. Re-assembling the pieces to form a 'patient specific picture of the pain' required collective staff memory, 'mental computation' and time.Conclusions: There is a need for an efficient method of eliciting and centralizing all pain-related information for patients with dementia, which is distributed in time and between personnel. Such a method should give an overall picture of a patient's pain which is rapidly accessible to all involved in their care. This would provide a much-needed basis for making decisions to support the effective management of the pain of older people with dementia in hospital. [ABSTRACT FROM AUTHOR]

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice. [ABSTRACT FROM AUTHOR]