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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: Nursing education starts in the classroom environment with a focus on the nurse educator-nursing student relationship. 'Presence' is defined as "a practice where the caregiver relates her/himself to the other in an attentive and dedicated way, by doing so learns to see what is at stake for the other; from desires to fear, and, in connection with this, come to understand what could be done in this particular situation and who she/he can be for the other". 'Presence' forms an integral part of the nursing profession and the value thereof should be facilitated during teaching and learning. Reflective practices may offer a teaching–learning strategy to facilitate presence in nursing students by nurse educators in large class settings. Having large classes presents challenges including from nurse educators' lack of knowledge about alternative teaching approaches; time demands for designing, implementing and testing new teaching methods; a lack of confidence in implementing new teaching approaches in the classroom; selecting and grading assessments; as well as feelings of discomfort and anxiety. A model to facilitate presence through reflective practices has already been developed and published by the present authors. The model relies on well-established steps in theory development covering concept analysis, model development and description (published in two papers by the present researchers) and model evaluation (the subject of this paper). The evaluation was carried out by a panel of experts and nursing participants. Methods: An explorative and descriptive qualitative design was followed. The developed model was evaluated and refined in two steps (covered in this paper). In Step 1, the model was evaluated by a panel of experts in model development, reflective practices and presence. The panel used critical reflection resulting in the refinement of the model. Step 2 involved an empirical phase where the model was evaluated by participants through participatory evaluation. Participants were selected through purposive sampling. Data collection methods included online semi-structured focus group interviews with nurse educators and virtual World Café sessions with nursing students. Content analysis was done through open coding. Results: Five themes emerged from the empirical phase, namely: Theme 1: understanding of the model; Theme 2: benefits of the model; Theme 3: limitations of the model; Theme 4: pre-existing conditions needed for successful implementation of the model; and Theme 5: recommendations for further development of the model. Conclusions: The results produced a refined model to be implemented into the curriculums of undergraduate, postgraduate and continuous professional development programmes across nursing education institutions. This model will significantly contribute to the body of knowledge and increase nurses' awareness of presence by transforming the way they feel, think, care and act in practice, which contributes to personal and professional development. [ABSTRACT FROM AUTHOR]

Purpose: This paper presents qualitative research findings from the evaluation of a Parkinson's Dance well-being venture in the UK. Methods: Qualitative data was gathered to see how bespoke dancing sessions helped people with Parkinson's (PwP) to manage their conditions and improve their lives and prospects. Principles of a participatory approach were incorporated and methods included semi-structured interviewing, researchers participant observation and an elicitation-based activity. Nineteen PwP, six carers, four dance artists and seven helpers participated in the study. Results: Participating in Parkinson's Dance sessions meant that PwP could experience the possibilities to dance, develop a "can do" attitude, experience fun, enjoyment, social connection, exercise, movement to music, improvement and/or maintenance of their balance, suppleness, coordination and confidence with movement, symptoms being pushed back and ability to learn new things. Conclusions: Our findings add to the evidence-base about the benefits of dance for people experiencing Parkinson's and through novel application of the Life-world based well-being framework of K. T. Galvin and Todres (2011) we propose a theoretical basis for Parkinson's Dance as a resource for well-being. There is scope to consider application of the well-being framework to other arts activities and as the basis of an arts and well-being evaluation tool. [ABSTRACT FROM AUTHOR]

Background: Virtual care quickly became of crucial importance to health systems around the world during the COVID-19 pandemic. Despite the potential of virtual care to enhance access for some communities, the scale and pace at which services were virtualized did not leave many organizations with sufficient time and resources to ensure optimal and equitable delivery of care for everyone. The objective of this paper is to outline the experiences of health care organizations rapidly implementing virtual care during the first wave of the COVID-19 pandemic and examine whether and how health equity was considered. Methods: We used an exploratory, multiple case study approach involving four health and social service organizations providing virtual care services to structurally marginalized communities in the province of Ontario, Canada. We conducted semi-structured qualitative interviews with providers, managers, and patients to understand the challenges experienced by organizations and the strategies put in place to support health equity during the rapid virtualization of care. Thirty-eight interviews were thematically analyzed using rapid analytic techniques. Results: Organizations experienced challenges related to infrastructure availability, digital health literacy, culturally appropriate approaches, capacity for health equity, and virtual care suitability. Strategies to support health equity included the provision of blended models of care, creation of volunteer and staff support teams, participation in community engagement and outreach, and securement of infrastructure for clients. We put our findings into the context of an existing framework conceptualizing access to health care and expand on what this means for equitable access to virtual care for structurally marginalized communities. Conclusion: This paper highlights the need to pay greater attention to the role of health equity in virtual care delivery and situate that conversation around existing inequitable structures in the health care system that are perpetuated when delivering care virtually. An equitable and sustainable approach to virtual care delivery will require applying an intersectionality lens on the strategies and solutions needed to address existing inequities in the system. [ABSTRACT FROM AUTHOR]

Global health practitioners and policymakers have become increasingly vocal about the complex challenges of identifying and quantifying the causes of death of the world's poorest people. To address this cause-of-death uncertainty and to minimise longstanding sensitivities about full autopsies, the Bill and Melinda Gates Foundation have been one of the foremost advocates of minimally invasive autopsy technology (MIA). MIA involves using biopsy needles to collect samples from key organs and body fluids; as such, it is touted as potentially more acceptable and less invasive than a complete autopsy, which requires opening the cadaver. In addition, MIA is considered a good means of collecting accurate bodily samples and can provide the crucial information needed to address cause-of-death uncertainty. In this paper, we employ qualitative data to demonstrate that while MIA technology has been introduced as a solution to the enduring cause-of-death uncertainty, the development and deployment of technologies such as these always constitute interventions in complex social and moral worlds; in this respect, they are both the solutions to and the causes of new kinds of uncertainties. We deconstruct the ways in which those new dimensions of uncertainty operate at different levels in the global health context. [ABSTRACT FROM AUTHOR]

Introduction: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner‐city areas of Bradford. Methods: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. Results: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women‐only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. Conclusion: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. Patient or Public Contribution: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Background: Patient and Public involvement (PPI) has rapidly evolved into a key component in shaping the delivery of health services. However, little is known about what it is like to participate in involvement procedures that include representatives of multiple groups and in the context of developing new interventions for Child and Adolescent Mental Health Services (CAMHS). Objective: This study explored participants' experiences of PPI, following attending a 'consensus conference', during which their views were sought in relation to the development of a proposed staff‐based intervention and key questions about its design and implementation. Design: Qualitative, semi‐structured interview study. Setting and Participants: Six participants, including service users and various frontline clinical staff team members, who had experience of CAMHS were present at the consensus conference and then asked about their experiences of being involved via semi‐structured interviews. The data were analysed using Interpretative Phenomenological Analysis (IPA). Young people, carers and frontline staff have been involved in the design and implementation throughout the broader programme of work of which this study forms part, although these groups were not directly involved in the design and implementation of this paper. Results: Three key narratives were present: (a) Previous Experiences Driving Expectations, (b) 'We are all in the same boat' and (c) The Realization of Multiple Identities. The results suggest that PPI involvement is a complex process that may be driven by positive/negative expectations, but that individuals value learning about others and recognizing different perspectives while reaching shared goals in improving services. Discussion and Conclusion: This study demonstrates the complexity of experience that service users and clinical staff face when engaging in involvement activities in CAMHS. The findings demonstrate the value in engaging multiple stakeholder groups while also highlighting the importance of proper consideration of the procedures involved and facilitators of engagement. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Background: Integration of sexual and reproductive health (SRH), HIV/AIDS and maternal health (MH) services is a critical strategy to confront the HIV/AIDS epidemic, high maternal mortality and the unmet need for contraception. In 2011 the AIDS Information Centre (AIC) in partnership with the Ministry of Health implemented SRH, HIV/AIDS and MH integration services in the districts of Katakwi and Mubende in Uganda. This paper documents challenges encountered in providing these integrated services in the two districts. Methods: This was a cross-sectional qualitative study conducted in Mubende and Katakwi districts in Uganda. Data were collected using 10 focus group discussions with 89 women attending ANC and postnatal care and 21 key informant interviews with district managers and health workers who were involved in the integrated service delivery. Content thematic approach was used for data analysis. Results: The study findings indicate that various challenges were encountered in integrating HIV, ANC and PNC services. Major challenges included inadequate staff, gaps in knowledge of service providers especially with regard to provision of long-term family planning, limited space, shortage of critical supplies such as HIV test kits, drugs and gloves. Conclusion: These findings indicate that the delivery of integrated HIV, SRH and MH services is hampered greatly by health system challenges and depict the need for additional staffing in health facilities, capacity building of health workers and health managers as well as ensuring sufficient supplies to health facilities for smooth implementation of integrated SRH, HIV and MH services. [ABSTRACT FROM AUTHOR]

Background: Electronic administrative data exist in several domains which, if linked, are potentially useful for research. However, benefits from data linkage should be considered alongside risks such as the threat to privacy. Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study. The Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. Qualitative research was incorporated in the PEARL study to examine participants' views about data linkage and inform approaches to information sharing. This paper focusses on issues of consent.Methods: Digitally recorded interviews were conducted with 55 participants aged 17-19 years. Terms and processes relating to consent, anonymization and data linkage were explained to interviewees. Scenarios were used to prompt consideration of linking different sources of data, and whether consent should be requested. Interview recordings were fully transcribed. Thematic analysis was undertaken using the Framework approach.Results: Participant views on data linkage appeared to be most influenced by: considerations around the social sensitivity of the research question, and; the possibility of tangible health benefits in the public interest. Some participants appeared unsure about the effectiveness of anonymization, or did not always view effective anonymization as making consent unnecessary. This was related to notions of ownership of personal information and etiquette around asking permission for secondary use. Despite different consent procedures being explained, participants tended to equate consent with 'opt-in' consent through which participants are 'asked' if their data can be used for a specific study. Participants raising similar concerns came to differing conclusions about whether consent was needed. Views changed when presented with different scenarios, and were sometimes inconsistent.Conclusions: Findings from this study question the validity of 'informed consent' as a cornerstone of good governance, and the extent to which potential research participants understand different types of consent and what they are consenting, or not consenting, to. Pragmatic, imaginative and flexible approaches are needed if research using data linkage is to successfully realise its potential for public good without undermining public trust in the research process. [ABSTRACT FROM AUTHOR]

Background: Active for Life Year 5 (AFLY5) is an educational programme for Year 5 children (aged 9-10) designed to increase children's physical activity, decrease sedentary behaviour and increase fruit and vegetable intake. This paper reports findings from a process evaluation embedded within a randomised controlled trial evaluating the programme's effectiveness. It considers the fidelity of implementation of AFLY5 with a focus on three research questions: 1. To what extent was the intervention delivered as planned? 2. In what ways, if any, did the teachers amend the programme? and 3. What were the reasons for any amendments? Methods: Mixed methods were used including data collection via observation of the intervention delivery, questionnaire, teacher's intervention delivery log and semi-structured interviews with teachers and parents. Qualitative data were analysed thematically and quantitative data were summarised using descriptive statistics. Results: Following training, 42 of the 43 intervention school teachers/teaching staff (98 %) were confident they could deliver the nutrition and physical activity lessons according to plan. The mean number of lessons taught was 12.3 (s.d. 3.7), equating to 77 % of the intervention. Reach was high with 95 % of children in intervention schools receiving lessons. A mean of 6.2 (s.d. 2.6) out of 10 homeworks were delivered. Median lesson preparation time was 10 min (IQR 10-20) and 28 % of lessons were reported as having been amended. Qualitative findings revealed that those who amended the lessons did so to differentiate for student ability, update them for use with new technologies and to enhance teacher and student engagement. Teachers endorsed the aims of the intervention, but some were frustrated with having to adapt the lesson materials. Teachers also a reported tendency to delegate the physical activity lessons to other staff not trained in the intervention. Conclusions: Fidelity of intervention implementation was good but teachers' enthusiasm for the AFLY5 programme was mixed despite them believing that the messages behind the lessons were important. This may have meant that the intervention messages were not delivered as anticipated and explain why the intervention was found not to be effective. Trial registration: ISRCTN50133740. [ABSTRACT FROM AUTHOR]

Background: International epidemiological research into violence against children is increasing in scope and frequency, but little has been written about practical management of the ethical aspects of conducting such research in low and middle-income countries. In this paper, we describe our study procedures and reflect on our experiences conducting a survey of more than 3,700 primary school children in Uganda as part of the Good Schools Study, a cluster randomised controlled trial of a school-based violence prevention intervention. Children were questioned extensively about their experiences of physical, sexual, and emotional violence from a range of different perpetrators. We describe our sensitisation and consent procedures, developed based on our previous research experience and requirements for our study setting. To respond to disclosures of abuse that occurred during our survey, we describe a referral algorithm developed in conjunction with local services. We then describe our experience of actually implementing these procedures in our 2012 survey, based on reflections of the research team. Drawing on 40 qualitative interviews, we describe children's experiences of participating in the survey and of being referred to local child protection services.Results: Although we were able to implement much of our protocol in a straightforward manner, we also encountered major challenges in relation to the response of local services to children's disclosures of violence. The research team had to intervene to ensure that children were provided with appropriate support and that our ethical obligations were met.Conclusions: In resource poor settings, finding local services that can provide appropriate support for children may be challenging, and researchers need to have concrete plans and back-up plans in place to ensure that obligations can be met. The merits of mandatory reporting of children's disclosures to local services need to be considered on a case by case basis-in some places this has the potential to do harm. Research teams also must agree on what level of ancillary care will be provided, and budget accordingly. Further practical examples of how to address the challenges encountered in this work are needed, in order to build a consensus on best practices.Trial Registration: NCT01678846 (clinicaltrials.gov), August 24, 2012. [ABSTRACT FROM AUTHOR]

Introduction: Unsafe abortion is a major contributor to the continued high global maternal mortality and morbidity rates. Legal abortion frameworks and access to sexuality education and contraception have been pointed out as vital to reduce unsafe abortion rates. This paper explores the relationship between abortion law, policy and women's access to safe abortion services within the different legal and political contexts of Ethiopia, Tanzania and Zambia. The research is inspired by recent calls for contextualized policy research. Methods: The research was based in Addis Ababa (Ethiopa), Dar es Salaam (Tanzania) and Lusaka (Zambia) and had a qualitative exploratory research design. The project involved studying the three countries' abortion laws and policies. It moreover targeted formal organizations as implementers of policy as well as stakeholders in support of, or in opposition to the existing abortion laws. Semi-structured interviews were carried out with study participants (79) differently situated vis-à-vis abortion, exploring their views on abortion-related legal- and policy frames and their perceived implications for access. Results: The abortion laws have been classified as 'liberal' in Zambia, 'semi-liberal' in Ethiopia and 'restrictive' in Tanzania, but what we encountered in the three study contexts was a seeming paradoxical relationship between national abortion laws, abortion policy and women's actual access to safe abortion services. The study findings moreover reveal that the texts that make up the three national abortion laws are highly ambiguous. The on-paper liberal Zambian and semi-liberal Ethiopian laws in no way ensure access, while the strict Tanzanian law is hardly sufficient to prevent young women from seeking and obtaining abortion. In line with Walt and Gilson's call to move beyond a narrow focus on the content of policy, our study demonstrates that the connection between law, health policy and access to health services is complex and critically dependent on the socio-economic and political context of implementation. Conclusions: Legal frameworks are vital instruments for securing the right to health, but broad contextualized studies rather than classifications of law along a liberal-restrictive continuum are demanded in order to enhance existing knowledge on access to safe abortion services in a given context. [ABSTRACT FROM AUTHOR]

Background: The workplace has been identified as an ideal setting for health interventions. However, few UK-based workplace intervention studies have been published. Fewer still focus on the practicalities and implications when running an intervention within the workplace setting. The objective of this paper was to qualitatively determine the perceived behaviour changes of participants in a free fruit at work intervention. Understanding the dynamics of a workplace intervention and establishing any limitations of conducting an intervention in a workplace setting were also explored.Methods: Twenty-three face-to-face interviews were conducted with individuals receiving free fruit at work for 18 weeks (74 % female). The worksite was the offices of a regional local government in the North East of England. Analysis was guided theoretically by Grounded Theory research and the data were subjected to content analysis. The transcripts were read repeatedly and cross-compared to develop a coding framework and derive dominant themes.Results: Topics explored included: the workplace food environment; the effect of the intervention on participants and on other related health behaviours; the effect of the intervention on others; participant's fruit consumption; reasons for not taking part in the intervention; expectations and sustainability post-intervention; and how to make the workplace healthier. Five emergent themes included: the office relationship with food; desk based eating; males and peer support; guilt around consumption of unhealthy foods; and the type of workplace influencing the acceptability of future interventions.Conclusion: Exploring the perceptions of participants offered valued insights into the dynamics of a free fruit workplace intervention. Findings suggest that access and availability are both barriers and facilitators to encouraging healthy eating in the workplace. [ABSTRACT FROM AUTHOR]