"Alone, there is nobody": A qualitative study of the lived experience of loneliness in older men living with HIV.

Loneliness has been shown to be a predictor of poor health and early mortality in the general population. Older men living with human immunodeficiency virus (HIV) are at heightened risk of experiencing loneliness. Here, we aim to describe the lived experience of loneliness in older men living with HIV and identify targets for intervention. We used grounded theory with a theoretical framework of narrative phenomenology to focus data collection and analysis on significant experiences related to loneliness. Based on individual narrative interviews with 10 older men living with HIV, experiences of loneliness related to "multiple losses," "being invisible" and "hiding out" as emergent themes. Participants also described living with loneliness by "finding meaning," "creating social experiences," "pursuing interests and things to 'live for'" and attending events in which "everyone is welcome." The discussion situates experiences of loneliness within the accumulation of losses and stigmas over time and how the participants strategies for living with loneliness could inform interventions to reduce loneliness in older men living with HIV at individual and societal levels.

The effectiveness of an antimicrobial stewardship program in an Australian rural hospital.

OBJECTIVE: The aim of this study was to investigate the type, indication and duration of restricted antibiotics prescribed to inpatients who had undergone antimicrobial stewardship (AMS) review by the infectious diseases specialist and to assess the effectiveness of the AMS program in a rural hospital. DESIGN: This was an observational retrospective study. SETTING: The study was conducted at a rural referral hospital in NSW. PARTICIPANTS: Inpatients from the medical, surgical and intensive care units were included. MAIN OUTCOME MEASURES: The main outcome measure was the type, indication and average duration of restricted antibiotics that were reviewed in the AMS rounds. The rate of adherence to AMS advice and the rate of step-down of antibiotics after AMS advice were other outcome measures. Data on participant characteristics were also collected. RESULTS: The most commonly prescribed restricted antibiotic in medicine and surgery was amoxicillin-clavulanic acid (28%), followed by ceftriaxone (15%) and piperacillin-tazobactam (10%), with the most common indication being intra-abdominal infection (37%). In intensive care, ceftriaxone (16.7%) and piperacillin-tazobactam (16.7%) were most prescribed, and the most common indication was community-acquired pneumonia (24.5%). The adherence rate to AMS advice was 86% in medicine and surgery and 83% in intensive care. AMS rounds managed to cease or step down antibiotics 60% of the time. CONCLUSION: The AMS program in a rural hospital was effective with an overall AMS advice adherence rate of 84.5% which measures well against tertiary-level centres. Continued AMS and advocacy of such programs in rural regions are fundamental to optimising patient outcomes in the rural community.

The Need for Sensory-Friendly "Zones": Learning From Youth on the Autism Spectrum, Their Families, and Autistic Mentors Using a Participatory Approach.

Introduction: Differences in sensory processing were linked to a diagnosis of autism spectrum disorder (ASD) before its inclusion as a core characteristic in the revised DSM-V. Yet, research focused on sensory processing and meaningful participation of children and youth with ASD remains relatively scarce. Although refinement of the International Classification of Functioning and Disability (ICF) relies on first-person accounts, longitudinal studies that foreground sensory experiences and its impact on involvement in a life situation from first-person perspectives are largely missing from this body of research. Objectives: In this sub-study, we drew from a longitudinal participatory research project consisting of two separately funded studies with children and youth with ASD and their families between 2014 and 2021. The participatory project used photovoice (PV) methods to identify the primary concerns related to socio-spatial exclusion (PV-1) and the action steps needed to redress them (PV-2). The objective of this sub-study was to understand what really mattered to children with autism, their parents, autistic youth and an adult mentor to consider how their experiential knowledge could deepen understanding of meaningful participation. Materials and Methods: We used an overarching narrative phenomenological and aesthetic theoretical framework to focus data analysis on the bodily sensing experiences related to significant moments or events, followed by an inductive thematic analysis of what mattered about those moments. Results: The topical areas of concern that emerged from analyses were: (1) the relationship between sensory experiences and mental health (motion madness); (2) the indivisibility or layering of sensory and social experiences (squishing and squeezing); (3) the impact when "tricks" to stay involved are categorically misunderstood (When you don't respond in the correct way), and (4) how care and consideration of others can lead to innovative solutions for inclusion (I can't be the only one). Listening to the bodily-sensing experiences of children with ASD, autistic youth and adults, and their families in their own terms has implications for remapping the ICF and envisioning sensory curb-cuts to access, initiate and sustain occupational participation for all.

Unpaid Caregiving and Aging in Place in the United States: Advancing the Value of Occupational Therapy.

Unpaid caregivers are often expected to help family members or friends overcome activity limitations and participation restrictions to successfully age in place. Caregivers assume multiple responsibilities, such as managing their own physical and psychosocial needs and navigating a complex health care system, and many feel ill equipped to fulfill the necessary health care responsibilities for their care recipients. Underprepared caregivers may cause poor outcomes for care recipients. Federal and state policy proposals call attention to the need to better support caregivers, especially as their numbers increase. Occupational therapy practitioners are well positioned to effectively engage caregivers as they navigate the health care system. The occupational therapy process looks broadly at the functional abilities, environmental contexts, and occupational demands that play a pivotal role in successful aging in place for clients and better outcomes for their caregivers. Now is the time to define occupational therapy's distinct value to this area.

Keeping care fully alive - An ethnography of Moving-with carers and persons living with dementia.

Metaphors of persons living with dementia as living dead or zombies create images of soulless bodies, consuming the lives of those around them. Such metaphors also accentuate the public fear of dementia as one of the most threatening conditions that can befall persons or their loved ones. Drawing from an ethnography on the experience of carers and persons living with dementia, the sub-study described in this article focused on specific events within Moving-with-an eight sessions movement group designed to cultivate new experiences of self with others. At the end of the last session, a carer referred to her experience of Moving-with as "some good times." Her statement raised questions about what constituted those "good times" for that particular carer and how they came to be. Using a narrative-phenomenological approach that foregrounds the particularities of human interactions, we traced the course of a "good time," from its creation by all the participants in a Moving-with session to how it entered into the couple's everyday life outside the sessions. A microanalysis of those significant experiences illuminates how the improvisational actions of those involved made space for others to respond in ways not solely defined by their caregiving relationship. Dewey's philosophy on aesthetics further highlights the fully alive nature of such moments and underscores how the embodied and ethical nature of care arises in the tension between past and present. Care as an experience is, thus, never fixed. Attention to those moments contributes to the ways in which we can (re)define and enact care. In other words, tracing the creation of fully alive moments and their portrayal can contribute to keeping care, itself, fully alive.

Stimulating Research to Enhance Aging in Place.

Older adults may benefit from interventions to successfully age in place. Research has an opportunity to test interventions and implementation strategies to fulfill the needs of older adults through collective evidence building. The purpose of this article is to describe the proceedings of the American Occupational Therapy Foundation (AOTF) 2019 Planning Grant Collective and describe the areas of research that were identified as critical. The AOTF convened scientists with expertise in the area of aging in place to catalyze research on aging in place for older adults. Four priority areas in the aging in place literature were highlighted: (a) identification of factors that support aging in place, (b) classification of processes by which family members and care partners are included in aging in place efforts, (c) categorization of technology supporting older adults to age in place, and (d) development of science that clarifies implementation of evidence-based practice.

What is "shared" in shared decision-making? Philosophical perspectives, epistemic justice, and implications for health professions education.

BACKGROUND: Drawing from the philosophical work of Hans-Georg Gadamer and the perspectives of theorists Mikhail Bakhtin and Kenneth Burke, the aim of this paper is to critically reflect on the meaning of the word "shared." METHOD: The authors draw on the concept of epistemic justice, which they argue permeates the clinical encounter, to discuss how various forms of, and claims to, knowledge may influence the attainement of shared decision-making in health care contexts. The specific objectives are twofold: first, the authors draw key concepts from key Gadamerian, Burkean, and Bakhtinian philosophical perspectives to consider shared decision-making in relation to two types of epistemic injustice: testimonial and hermeneutic epistemic injustice. Second, building on philosopher Paulo Freire's critical pedagogy, the authors emphasize that major changes in educational structures and systems are required to promote the critical reflexivity required to address issues of epistemic justice, in the broader pursuit of authentic shared decision-making. RESULTS: They propose three main areas of focus for helath professions education: (a) changes in content (moving from a focus on biomedical knowledge to more content on social sciences) and methods of teaching (more dialogue and the creation of moments of dissonance); (b) a re-examination of teachers' role in promoting epistemic justice; and (c) inclusion of patients as partners. CONCLUSIONS: Without major transformation in what, how, and with whom we teach, future clinicians may be unprepared to enact shared decision-making in a manner that does justice to the various ways of knowing.

A matter of time: grappling with everyday ethical tensions at the confluence between policy and practice in a psychiatric unit.

OBJECTIVE: To provide insights on emergent ethical tensions experienced by mental health practitioners during system re-organisation, which is sufficiently grounded in empirical data at the local level to inform policy on recovery at institutional and provincial levels. METHOD: Ethnographic methods using narrative and critical phenomenological resources over 24 months. FINDINGS: Everyday ethical tensions emerged at the confluence of different experiences of time, for example, how a context of increasing pressure to decrease patients' length of stay at the hospital (service-defined time) challenged efforts to listen to and advocate for what mattered to patients (personal time) and maintain the integrity of interventions (clinical time). In this context, practitioners drew on clinical language and that of personal recovery to strategically 'push back', 'play with' or 'take back' time. DISCUSSION: Examining everyday practices through ethnographic methods can illuminate the everyday ethical tensions that arise when mental health professionals and psychiatrists grapple with, often competing, goods. Critical phenomenological resources can help expand the structural considerations in empirical ethics, excavate underground practices and raise questions about the conceptual categories undergirding normative ethics. Experiencing-with practitioners in clinical contexts as they encounter and creatively resolve ethical tensions also propose a normative ethics of possibility, to help bridge the gap between empirical and normative ethics. CONCLUSION: Focus on the relationship between policy, temporal practices and ethics suggests a reconfiguration of time and re-imagination of ethics in institutional settings in ways that can ultimately benefit patients and professionals alike.

Wearable Technology for Detecting Significant Moments in Individuals with Dementia.

The detection of significant moments can support the care of individuals with dementia by making visible what is most meaningful to them and maintaining a sense of interpersonal connection. We present a novel intelligent assistive technology (IAT) for the detection of significant moments based on patterns of physiological signal changes in individuals with dementia and their caregivers. The parameters of the IAT are tailored to each individual's idiosyncratic physiological response patterns through an iterative process of incorporating subjective feedback on videos extracted from candidate significant moments identified through the IAT algorithm. The IAT was tested on three dyads (individual with dementia and their primary caregiver) during an eight-week movement program. Upon completion of the program, the IAT identified distinct, personal characteristics of physiological responsiveness in each participant. Tailored algorithms could detect moments of significance experienced by either member of the dyad with an agreement with subjective reports of 70%. These moments were constituted by both physical and emotional significances (e.g., experiences of pain or anxiety) and interpersonal significance (e.g., moments of heighted connection). We provide a freely available MATLAB toolbox with the IAT software in hopes that the assistive technology community can benefit from and contribute to these tools for understanding the subjective experiences of individuals with dementia.

View From the Penthouse: Epistemological Bumps and Emergent Metaphors as Method for Team Reflexivity.

Research in health care occurs within interdisciplinary teams that include clinician-researchers who have multiple epistemological orientations. Rigor in collaborative projects requires reflexive attention to how the paradigmatic questions raised by diverse epistemological orientations, and the ethical stances of each researcher, shape findings. This methodological article draws on three events during an ethnography of stigma in psychiatry to define and illustrate how we used double hermeneutics in data analysis. This allowed us to examine the metaphors that emerged from what we are conceptualizing as "epistemological bumps." This heightened the team's awareness of the epistemological horizons and mixing that occurred, as well as revealing what mattered to each researcher, during the crafting of our research decisions and findings. We argue that interdisciplinary research on complex processes in health care requires this close examination of team experiences and moral stakes during collaborative analysis, and offer conceptual suggestions for reflexivity and rigor.

Being visible: PhotoVoice as assessment for children in a school-based psychiatric setting.

BACKGROUND: Recovery-oriented mental health services empower all clients, including youth and their families, to be actively involved in directing their own care. In order to develop person-driven interventions, clinicians must understand what matters from their perspective. Thus, recovery-oriented assessments need self-report measures that adequately capture the domains and content that matter to a range of particular persons. AIM: This study examined if and how PhotoVoice, a participatory research method used to empower and highlight the unique experiences of vulnerable groups, could be used as a recovery-oriented self-report measure for children with a mental health disorder. METHODS: We used PhotoVoice to engage four children with mental health related disorders at a day hospital program for severe behavioural disorders. The children, as co-researchers in this participatory approach, created life books from photographs and images of what mattered to them across nine sessions. To examine the PhotoVoice process, we used ethnographic methods, including child interviews and participant observations in their classes and at recess before, during and after the weekly sessions. Our overarching narrative-phenomenological theoretical framework focused data collection and analysis on what mattered most to the children. RESULTS: The PhotoVoice method engaged and empowered the children in articulating what mattered in their everyday lives from their perspective that resulted in a novel, child-generated domain of 'mattering to others' for future self-report measures, and facilitated changes that generalized outside of the group. We illustrate these results by drawing a particularly illustrative case example from the study. CONCLUSION: The PhotoVoice method foregrounded children's perspectives on what matters more explicitly than clinical or parent perspective on function. SIGNIFICANCE: The participatory philosophy and methods of PhotoVoice provides a viable approach to recovery-oriented self-report measures as well as an occupation-based assessment and intervention.

A qualitative study on the ethics of transforming care: examining the development and implementation of Canada's first mental health strategy.

BACKGROUND: The Mental Health Commission of Canada worked collaboratively with stakeholders to create a new framework for a federal mental health strategy, which is now mandated for implementation by 2017. The proposed strategies have been written into provincial health plans, hospital accreditation standards, and the annual objectives of psychiatric departments and community organizations. This project will explore the decision-making process among those who contributed to Canada's first federal mental health policy and those implementing this policy in the clinical setting. Despite the centrality of ethical reasoning to the successful uptake of the recent national guidelines for recovery-oriented care, to date, there are no studies focused exclusively on the ethical tensions that emerged and continue to emerge during the creation and implementation of the new standards for recovery-oriented practice. METHODS/DESIGN: This two-year Canadian Institute of Health Research Catalyst Grant in Ethics (2015-2017) consists of three components. C-I, a retrospective, qualitative study consisting of document analysis and interviews with key policy-makers of the ethical tensions that arose during the development of Canada's Mental Health Strategy will be conducted in parallel to C-II, a theory-based, focused ethnography of how mental health practitioners in a psychiatric setting reason about and act upon new standards in everyday practice. Case-based scenarios of ethical tensions will be developed from C-I/II and fed-forward to C-III: participatory forums with policy-makers, mental health practitioners, and other stakeholders in recovery-oriented services to collectively identify and prioritize key ethical concerns and generate action steps to close the gap between the policy-making process and its implementation at the local level. DISCUSSION: Policy-makers and clinicians make important everyday decisions that effect the creation and implementation of new practice standards. Particularly, there is a need to understand how ethical dilemmas that arise during this decision-making process and the reasoning and resources they use to resolve these tensions impact on the implementation process. This catalyst grant in ethics will (1) introduce a novel line of inquiry focusing on the ethical tensions that arose in the development of Canada's first mental health strategy, while (2) intensifying our focus on the ethical aspects of moving policy into action.

Transforming mental health services: a participatory mixed methods study to promote and evaluate the implementation of recovery-oriented services.

BACKGROUND: Since 2007, the Mental Health Commission of Canada has worked collaboratively across all provinces to publish a framework and strategy for recovery and well-being. This federal document is now mandated as policy for implementation between 2012 and 2017. The proposed strategies have been written into provincial health plans, hospital accreditation standards, and annual objectives of psychiatric departments and community organizations. The core premise is: to empower persons with mental illness and their families to become participants in designing their own care, while meeting the needs of a diverse Canadian population. However, recovery principles do not come with an implementation guide to fit the variability of different local contexts. How can policy recommendations and accreditation standards be effectively tailored to support a diversity of stakeholder values? To our knowledge, there is little evidence indicating the most effective manner to accelerate the uptake of recovery-oriented services among providers in a given/particular mental health treatment setting. METHODS/DESIGN: This three-year Canadian Institute of Health Research Partnership in Health System Improvement and The Rx&D Health Research Foundation (HRF) Fostering Canadian Innovation in Research study (2013 to 2017) proposed participatory approaches to implementing recovery principles in a Department of Psychiatry serving a highly diverse Canadian and immigrant population. This project will be conducted in overlapping and recursive phases: I) Conduct formative research to (a) measure the current knowledge and attitudes toward recovery and recovery-oriented practices among service providers, while concurrently (b) exploring the experiential knowledge of recovery service-users and family members; II) Collaborate with service-users and the network-identified opinion leaders among providers to tailor Recovery-in-Action Initiatives to fit the needs and resources of a Department of Psychiatry; and III) Conduct a systematic theory-based evaluation of changes in attitudes and practices within the service-user/service-provider partnership group relative to the overall provider network of the department and identify the barriers and supports within the local context. DISCUSSION: Our anticipated outcome is a participatory toolkit to tailor recovery-oriented services, which will be disseminated to the Mental Health Commission of Canada and Accreditation Canada at the federal level, agencies at the provincial levels, and local knowledge end-users.

Mental health consumers and providers dialogue in an institutional setting: a participatory approach to promoting recovery-oriented care.

OBJECTIVE: This brief report presents the preliminary findings of a participatory project, to answer a question raised by stakeholders in mental health services: How can providers and patients create a process for knowledge exchange to support recovery-oriented care? METHOD: Participatory action research (PAR) and narrative phenomenological methodology guided the selection of methods, which consisted of an iterative process between telling stories and dialoguing about personal values related to recovery. The sample consisted of three occupational therapists, a psychiatrist, an academic-clinician, and five consumers of mental health services who were involved in each stage of the research, including design, interpretation, dissemination, and implementation. RESULTS: Significant interpersonal and intrapersonal tensions were named, and conditions for a more sustainable process of knowledge exchange were explored. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The project revealed both the challenges with situating research within an institution (hierarchy of knowledge, power, and vulnerability) and face-to-face dialogue, as well as positive changes in professional attitudes and consumer empowerment, as providers and patients came to understand what was at stake for each other. The project underscored the need for provider-consumer dialogue as a process to explore tensions and values in promoting recovery-oriented care.

Moving Beyond 'Aging In Place' to Understand Migration and Aging: Place Making and the Centrality Of Occupation.

'Aging in place' has become a key conceptual framework for understanding and addressing place within the aging process. However, aging in place has been critiqued for not sufficiently providing tools to understand relations or transactions between aging and place, and for not matching the diversity of contemporary society in which people are moving between and across nations more than ever before. In this article, the authors draw from concepts of place and migration that are becoming increasingly visible in occupational science. The concept of 'aging in place' is critically examined as an example of an ideal where the understanding of place is insufficiently dynamic in a context of migration. The authors suggest that the concept of place making can instead be a useful tool to understand how occupation can be drawn upon to negotiate relationships that connect people to different places around the world, how the negotiated relations are embedded within the occupations that fill daily lives, and how this process is contextualized and enacted in relation to resources and capabilities.

Pleasure, Throwing Breaches, and Embodied Metaphors: Tracing Transformations-in-Participation for a Child With Autism to a Sensory Integration-Based Therapy Session.

In occupational therapy practice, the rich interweaving of procedural and narrative reasoning results in healing transformations. However, a lack of research focus on transformational processes perpetuates a focus on observable and measurable behaviors. In line with the movement toward evidence-based implementation research, this article focuses on a case study drawn from an ethnography of therapist-child-family interactions in a sensory integration-based clinic to provide a thick description of the moments leading up to and following changes in bodily and social engagement for a child with autism. Using theoretical resources on acted narratives and aesthetics, this article provides a developing method and language to show how an occupational therapist and a child with autism throw breaches to jointly create embodied metaphors of what matters to the child in his or her everyday life. A microanalysis of therapist-child bodily and sensing interactions also reveals how narrative and procedural reasoning converge in moments of pleasure that ultimately lead to outcomes in participation outside the clinic and confound characterizations of autistic aloneness. Implications for research on sensory integration approaches in general and social interventions for children with autism are discussed.

Nurse practitioners, certified nurse midwives, and physician assistants in physician offices.

The expansion of health insurance coverage through health care reform, along with the aging of the population, are expected to strain the capacity for providing health care. Projections of the future physician workforce predict declines in the supply of physicians and decreasing physician work hours for primary care. An expansion of care delivered by nurse practitioners (NPs), certified nurse midwives (CNMs), and physician assistants (PAs) is often cited as a solution to the predicted surge in demand for health care services and calls for an examination of current reliance on these providers. Using a nationally based physician survey, we have described the employment of NPs, CNMs, and PAs among office-based physicians by selected physician and practice characteristics.

Belonging: a qualitative, longitudinal study of what matters for persons after stroke during the one year of rehabilitation.

OBJECTIVE: To investigate the meaning of acting with others, in different places over the course of 1 year post-stroke. METHODS: Qualitative interviews with 9 persons, age range 42-61 years (7 persons with cerebrovascular accident and 2 with subarachnoidal haemorrhage) over the course of a year (i.e. 3, 6, 9 and 12 months) were analysed using a grounded theory approach. RESULTS: Four categories were identified from the analysis of the participants' experiences during the year of rehabilitation: (i) not recognized as the person I am; (ii) the burden of burden; (iii) inspiration and belonging through acting with others; (iv) reality adjustment through acting with others. From these categories a core category emerged: a process of belonging for integration. CONCLUSION: The 4 categories identified suggest that belonging is integral to participation, which is viewed as the goal of rehabilitation.

Balancing the good - a critical discourse analysis of home modification services.

Today an increasing number of people with functional limitations are ageing in their homes. Although the home has become an arena for assessment and implementation of services, little is known about how the interrelationships between ideological and practical circumstances influence the allocation of such welfare services. This explorative study applied a combination of critical discourse analysis and a narrative approach to closely examine such relationships in home modification services to older persons in Sweden. Data consisted of focus group discussions with street-level bureaucrats from two institutional contexts in the organisational field of home modification services and official documents related to such services. Findings showed that the attempts of street-level bureaucrats to allocate resources in accordance with the good were complicated by competing local definitions of 'the good'. The process of forming local perceptions of the good included complex balancing acts between hegemonic discourses within the organisational field which influenced and shaped how 'the good' was practised. Understanding the moral dimensions that enter into the complexity of allocation of home modification services across institutional settings has implications for the policies of and practices for the allocation of welfare resources.