On the notion of home and the goals of palliative care

The notion of home is well known from our everyday experience, and plays a crucial role in all kinds of narratives about human life, but is hardly ever systematically dealt with in the philosophy of medicine and health care. This paper is based upon the intuitively positive connotation of the term “home.” By metaphorically describing the goal of palliative care as “the patient’s coming home,” it wants to contribute to a medical humanities approach of medicine. It is argued that this metaphor can enrich our understanding of the goals of palliative care and its proper objectives. Four interpretations of “home” and “coming home” are explored: (1) one’s own house or homelike environment, (2) one’s own body, (3) the psychosocial environment, and (4) the spiritual dimension, in particular, the origin of human existence. Thinking in terms of coming home implies a normative point of view. It represents central human values and refers not only to the medical-technical and care aspects of health care, but also to the moral context

Mapping new theoretical and methodological terrain for knowledge translation: contributions from critical realism and the arts

Abstract Background Clinical practice guidelines have been a popular tool for the improvement of health care through the implementation of evidence from systematic research. Yet, it is increasingly clear that knowledge alone is insufficient to change practice. The social, cultural, and material contexts within which practice occurs may invite or reject innovation, complement or inhibit the activities required for success, and sustain or alter adherence to entrenched practices. However, knowledge translation (KT) models are limited in providing insight about how and why contextual contingencies interact, the causal mechanisms linking structural aspects of context and individual agency, and how these mechanisms influence KT. Another limitation of KT models is the neglect of methods to engage potential adopters of the innovation in critical reflection about aspects of context that influence practice, the relevance and meaning of innovation in the context of practice, and the identification of strategies for bringing about meaningful change. Discussion This paper presents a KT model, the Critical Realism and the Arts Research Utilization Model (CRARUM), that combines critical realism and arts-based methodologies. Critical realism facilitates understanding of clinical settings by providing insight into the interrelationship between its structures and potentials, and individual action. The arts nurture empathy, and can foster reflection on the ways in which contextual factors influence and shape clinical practice, and how they may facilitate or impede change. The combination of critical realism and the arts within the CRARUM model promotes the successful embedding of interventions, and greater impact and sustainability. Conclusion CRARUM has the potential to strengthen the science of implementation research by addressing the complexities of practice settings, and engaging potential adopters to critically reflect on existing and proposed practices and strategies for sustaining change.</p

Mapping new theoretical and methodological terrain for knowledge translation: contributions from critical realism and the arts

Abstract Background Clinical practice guidelines have been a popular tool for the improvement of health care through the implementation of evidence from systematic research. Yet, it is increasingly clear that knowledge alone is insufficient to change practice. The social, cultural, and material contexts within which practice occurs may invite or reject innovation, complement or inhibit the activities required for success, and sustain or alter adherence to entrenched practices. However, knowledge translation (KT) models are limited in providing insight about how and why contextual contingencies interact, the causal mechanisms linking structural aspects of context and individual agency, and how these mechanisms influence KT. Another limitation of KT models is the neglect of methods to engage potential adopters of the innovation in critical reflection about aspects of context that influence practice, the relevance and meaning of innovation in the context of practice, and the identification of strategies for bringing about meaningful change. Discussion This paper presents a KT model, the Critical Realism and the Arts Research Utilization Model (CRARUM), that combines critical realism and arts-based methodologies. Critical realism facilitates understanding of clinical settings by providing insight into the interrelationship between its structures and potentials, and individual action. The arts nurture empathy, and can foster reflection on the ways in which contextual factors influence and shape clinical practice, and how they may facilitate or impede change. The combination of critical realism and the arts within the CRARUM model promotes the successful embedding of interventions, and greater impact and sustainability. Conclusion CRARUM has the potential to strengthen the science of implementation research by addressing the complexities of practice settings, and engaging potential adopters to critically reflect on existing and proposed practices and strategies for sustaining change

Dementia care at the intersection of regulation and reflexivity: A critical realist perspective

Objectives. To understand point-of-care decisions, and in particular rule breaking, by personal support workers (PSWs) regarding institutionalized elders with dementia within a context of legislative and organizational care mandates. Methods. Qualitative baseline data including focus groups and semi-structured interviews with PSWs (n = 26) and supervisors (n = 9) were collected during a 2-year, multi-method trial of a 12-week interprofessional arts-informed educational intervention in two Alzheimer support units and were analyzed using a critical realist approach. Results. PSW care decisions were the outcome of a discordant interrelationship between PSWs’ reflective deliberations, and legislative and organizational care mandates. PSWs responded to discordance through rule breaking in order to provide individualized care. Unbeknownst to PSWs, rule breaking was contingent upon supervisors’ case-by-case complicity as they strove to balance fears of regulatory citations with private assessment of the soundness of PSW logic. Discussion. Quality care emerges at the intersection of policies governing long-term care, PSW rule breaking, and the supportive but undisclosed role supervisors play in these violations. Understanding this complexity has important implications for initiatives to improve care practices and to challenge legislation and policies that impede dementia care

Grief, anger, and relationality: The impact of a research based theatre intervention on emotion work practices in brain injury rehabilitation

Background: Therapeutic emotion work is performed by health care providers as they manage their own feelings as well as those of colleagues and patients as part of efforts to improve the physical and psychosocial health outcomes of patients. It has yet to be examined within the context of traumatic brain injury rehabilitation. Objective: To evaluate the impact of a research-based theater intervention on emotion work practices of neurorehabilitation staff. Research Design: Data were collected at baseline and at 3 and 12 months postintervention in the inpatient neurorehabilitation units of two rehabilitation hospitals in central urban Canada. Subjects: Participants (N = 33) were recruited from nursing, psychology, allied health, recreational therapy, and chaplaincy. Measures: Naturalistic observations (N = 204.5 hr) of a range of structured and unstructured activities in public and private areas, and semistructured interviews (N = 87) were conducted. Results: Preintervention analysis indicated emotion work practices were characterized by stringent self-management of empathy, suppression of client grief, adeptness with client anger, and discomfort with reactions of family and spouses. Postintervention analysis indicated significant staff changes in a relationality orientation, specifically improvements in outreach to homosexual and heterosexual family care partners, and support for sexual orientation and intimacy expression. No improvements were demonstrated in grief support. Conclusion: Emotion work has yet to be the focus of initiatives to improve neurorehabilitative care. Our findings suggest the dramatic arts are well positioned to improve therapeutic emotion work and effect cultures of best practice. Recommendations are made for interprofessional educational initiatives to improve responses to client grief and potential intimate partner violence

Improving client-centered brain injury rehabilitation through research-based theater

Traumatic brain injury often results in physical, behavioral, and cognitive impairments perceived by health care practitioners to limit or exclude clients’ full participation in treatment decision making. We used qualitative methods to evaluate the short- and long-term impact of “After the Crash: A Play About Brain Injury,” a research-based drama designed to teach client-centered care principles to brain injury rehabilitation staff. We conducted interviews and observations with staff of two inpatient neurorehabilitation units in Ontario, Canada. Findings demonstrate the effectiveness of the play in influencing practice through the avoidance of medical jargon to improve clients’ understanding and participation in treatment; newfound appreciation for clients’ needs for emotional expression and sexual intimacy; increased involvement of family caregivers; and avoidance of staff discussions as if clients were unaware. These findings suggest that research-based drama can effect reflexivity, empathy, and practice change to facilitate a client-centered culture of practice in brain injury rehabilitation