A cultural and gender-based approach to understanding patient adjustment to chronic heart failure.

BACKGROUND: Persons identifying as Black, Chinese, or South Asian make up the largest minority groups in Canada. Individuals with chronic heart failure (CHF) from these groups experience a greater rate of re-hospitalization and poorer quality of life. Although experts agree that culture can shape the experience of CHF, little is known about how patients from these minority populations define a good quality of life with CHF and what barriers they experience when carrying out self-care behaviours. The aim of this qualitative study was to examine cultural and gender-based influences on quality of life in patients with CHF. METHODS: Purposive sampling included 30 patients (67% male), 18 to 75 years of age, who self-identified as Black (n = 8), Chinese (n = 9), or South Asian (n = 6). Caucasians (n = 7) were included as a comparison group. Semi-structured interviews (see the online appendix), lasting approximately 60 min, were conducted, which focused on personal understanding of CHF and living with the disease, including impact on lifestyle and quality of life. An inductive qualitative approach with thematic content analysis was used to develop key insights into individual experience of CHF, as well as cultural and gender-based influences on self-care and quality of life. Descriptive statistics were generated from questionnaire responses. RESULTS: Five key themes emerged from the narrative analysis of participant interviews: (i) CHF as an emergent reality, (ii) quality of life and disruption of lifecourse milestones, (iii) the challenge to accept CHF and re-evaluation of quality of life; (iv) impact on social activities essential to quality of life, and (v) life with CHF as a commitment to culturally tailored self-care. Participants described the unique impact of CHF on their quality of life, including life trajectory milestones such as dating, parenting, and retirement planning, as well as the importance of accepting their diagnosis, and the reframing goals for living well with heart failure. Positive and negative impacts on social relationships were noted, including sexual intimacy and interactions with spouses, other family members, and co-workers. CONCLUSIONS: Study findings highlight important lifespan, cultural, and gender considerations that can inform the improvement of patient care and quality of life for patients and their families.

Fit for Dialysis: a qualitative exploration of the impact of a research-based film for the promotion of exercise in hemodialysis.

BACKGROUND: Exercise improves functional outcomes and quality of life of older patients with end-stage renal disease undergoing hemodialysis. Yet exercise is not promoted as part of routine care. Health care providers and family carers rarely provide encouragement for patients to exercise, and the majority of older patients remain largely inactive. There is thus the need for a shift in the culture of hemodialysis care towards the promotion of exercise for wellness, including expectations of exercise participation by older patients, and encouragement by health care providers and family carers. Film-based educational initiatives hold promise to effect cultures of best practice, but have yet to be utilized in this population. METHODS: We developed a research-based film, Fit for Dialysis, to promote exercise for wellness in hemodialysis care. Using a qualitative approach, we evaluated the effects that resulted from engagement with this film (e.g. knowledge/attitudes regarding the importance of exercise-based principles of wellness) as well as the generative mechanisms of these effects (e.g. realism, aesthetics). We also explored the factors related to patients, family carers, and health care providers that influenced engagement with the film, and the successful uptake of the key messages of Fit for Dialysis. We conducted qualitative interviews with 10 patients, 10 health care providers, and 10 family carers. Data were analyzed using thematic analysis. RESULTS: The film was perceived to be effective in increasing patients', family carers' and health care providers' understanding of the importance of exercise and its benefits, motivating patients to exercise, and in increasing encouragement by family carers and health care providers of patient exercise. Realism (e.g. character identification) and aesthetic qualities of the film (e.g. dialogue) were identified as central generative mechanisms. CONCLUSIONS: Fit for Dialysis is well-positioned to optimize the health and wellbeing of older adults undergoing hemodialysis. TRIAL REGISTRATION: NCT02754271 ( ClinicalTrials.gov ), retroactively registered on April 21, 2016.

A prospective 2-site parallel intervention trial of a research-based film to increase exercise amongst older hemodialysis patients.

BACKGROUND: Evidence suggests that exercise training for hemodialysis patients positively improves morbidity and mortality outcomes, yet exercise programs remain rare and are not systematically incorporated into care. We developed a research-based film, Fit for Dialysis, designed to introduce, motivate, and sustain exercise for wellness amongst older hemodialysis patients, and exercise counseling and support by nephrologists, nurses, and family caregivers. The objective of this clinical trial is to determine whether and in what ways Fit for Dialysis improves outcomes and influences knowledge/attitudes regarding the importance of exercise for wellness in the context of end-stage renal disease. METHODS/DESIGN: This 2-site parallel intervention trial will recruit 60 older hemodialysis patients from two urban hospitals. The trial will compare the film + a 16-week exercise program in one hospital, with a 16-week exercise-only program in another hospital. Physical fitness and activity measures will be performed at baseline, 8 and 16 weeks, and 12 weeks after the end of the program. These include the 2-min Walk Test, Grip Strength, Duke Activity Status Index, and the Timed Up-and-Go Test, as well as wearing a pedometer for one week. Throughout the 16-week exercise program, and at 12 weeks after, we will record patients' exercise using the Godin Leisure-time Exercise Questionnaire. Patients will also keep a diary of the exercise that they do at home on non-dialysis days. Qualitative interviews, conducted at baseline, 8, and 16 weeks, will explore the impact of Fit for Dialysis on the knowledge/attitudes of patients, family caregivers, and nephrology staff regarding exercise for wellness, and in what ways the film is effective in educating, motivating, or sustaining patient exercise during dialysis, at home, and in the community. DISCUSSION: This research will determine for whom Fit for Dialysis is effective, why, and under what conditions. If Fit for Dialysis is proven beneficial to patients, nephrology staff and family caregivers, research-based film as a model to support exercise promotion and adherence could be used to support the National Kidney Foundation's guideline recommendation (NKF-KDOQI) that exercise be incorporated into the care and treatment of dialysis patients. TRIAL REGISTRATION: NCT02754271 (ClinicalTrials.gov), retroactively registered on April 21, 2016.

Relational citizenship: supporting embodied selfhood and relationality in dementia care.

We draw on findings from a mixed-method study of specialised red-nosed elder-clowns in a long-term care facility to advance a model of 'relational citizenship' for individuals with dementia. Relational citizenship foregrounds the reciprocal nature of engagement and the centrality of capacities, senses, and experiences of bodies to the exercise of human agency and interconnectedness. We critically examine elder-clown strategies and techniques to illustrate how relational citizenship can be supported and undermined at the micro level of direct care through a focus on embodied expressions of creativity and sexuality. We identify links between aesthetic enrichment and relational practices in art, music and imagination. Relational citizenship offers an important rethinking of notions of selfhood, entitlement, and reciprocity that are central to a sociology of dementia, and it also provides new ethical grounds to explore how residents' creative and sexual expression can be cultivated in the context of long-term care.

Relational caring: the use of the victim impact statement by sexually assaulted women.

The victim impact statement (VIS) is a written account of harms experienced as a result of crime. This study investigates VIS use by sexually assaulted women through interviews with Canadian victims, victim services workers, and feminist advocates (N = 35). Findings suggest that victims use the VIS to express relational caring. Relational caring is an ethic of care that prioritizes others through privileging the harms experienced by others because of witnessing the sexual assault or coping with the victim's postassault sequelae, protecting future or hypothetical victims, and promoting the interests of intimate partner offenders. Relational caring challenges traditional conceptions of victim agency and VIS use for instrumental purposes, as well as the targets and temporalities of sexual assault harms that are detailed in the statement. Relational caring has unique implications for victims who are mothers, especially those abused as minors, and for intimate partners. Legal, therapeutic, and social service consequences are discussed.

The intraprofessional and interprofessional relations of neurorehabilitation nurses: a negotiated order perspective.

AIMS: To report a study of the negotiation practices of neurorehabilitation nurses with one another and with allied health professionals to understand nursing relations. BACKGROUND: Negotiated order theory offers a promising theoretical lens with which to explore negotiation between nurses and other professionals. This study is the first to apply the perspective to nurse-nurse and nurse-allied health professional relations. DESIGN: The study is a secondary analysis of findings from a multi-site arts-based intervention to improve patient-centred neurorehabilitation practice. METHODS: Interviews and ethnographic observations were conducted (2008-2011) in two neurorehabilitation units in Ontario, Canada. Participants (n = 31) included registered and practical nurses, nurse leaders, and allied health professionals from physical, occupational, and recreational therapy, speech language pathology, and social work. FINDINGS: Neurorehabilitation nursing is characterized by heavy workload, high patient acuity, and poor interprofessional collaboration. This practice context was negotiated by nurses through two strategies: (1) intraprofessional collegialism, accomplished through tactics including task and knowledge sharing, emotional support, coercive threats, and suppression of dissension; and (2) vying for an autonomous essential nursing role in interprofessional practice, accomplished by claiming unique nursing knowledge based on 24/7 nursing proximity, the expansion of the division of professional labour with allied health professionals and modifying physical therapy care plans. CONCLUSION: The intraprofessional context and negotiations therein were linked in significant ways to interprofessional negotiations. Understanding this complexity has important implications for improving patient safety and interprofessional practice interventions.

Purposing and repurposing harms: the victim impact statement and sexual assault.

The purpose of the victim impact statement (VIS) is to inform judges of victims' crime-related physical, psychological, and financial harms. Findings from interviews with Canadian sexual assault victims, advocates, victim services workers, and prosecutors (N = 37) demonstrated that harm descriptions were manipulated by victims and others in keeping with, and contrary to, VIS design. Victims and prosecutors purposed the VIS to inform court outcomes through harms claims and struggles over those claims. The repurposing of harms claims occurred through practices of strategic disclosure, intended to effect changes in others' behaviors, and harm peddling, the circulation of the VIS in nonsentencing arenas. Victims, adversaries, and criminal justice professionals engaged in harm peddling to obtain compensation, child custody, and parole delay. Implications of purposing and repurposing harms claims include novel opportunities and legal pitfalls for victims, varied responses by judges, and an expansion of social control over victims and offenders.

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.

Communication channels in general internal medicine: a description of baseline patterns for improved interprofessional collaboration.

General internal medicine (GIM) is a communicatively complex specialty because of its diverse patient population and the number and diversity of health care providers working on a medicine ward. Effective interprofessional communication in such information-intensive environments is critical to achieving optimal patient care. Few empirical studies have explored the ways in which health professionals exchange patient information and the implications of their chosen communication forms. In this article, we report on an ethnographic study of health professionals' communication in two GIM wards through the lens of communication genre theory. We categorize and explore communication in GIM into two genre sets-synchronous and asynchronous-and analyze the relationship between them. Our findings reveal an essential relationship between synchronous and asynchronous modes of communication that has implications for the effectiveness of interprofessional collaboration in this and similar health care settings, and is intended to inform efforts to overcome existing interprofessional communication barriers.

Interprofessional interaction, negotiation and non-negotiation on general internal medicine wards.

Research suggests that health care can be improved and patient harm reduced when health professionals successfully collaborate across professional boundaries. Consequently, there is growing support for interprofessional collaboration in health and social care, both nationally and internationally. Factors including professional hierarchies, discipline-specific patterns of socialization, and insufficient time for teambuilding can undermine efforts to improve collaboration. This paper reports findings from an ethnographic study that explored the nature of interprofessional interactions within two general and internal medicine (GIM) settings in Canada. 155 hours of observations and 47 interviews were gathered with a range of health professionals. Data were thematically analyzed and triangulated. Study findings indicated that both formal and informal interprofessional interactions between physicians and other health professionals were terse, consisting of unidirectional comments from physicians to other health professionals. In contrast, interactions involving nurses, therapists and other professionals as well as intraprofessional exchanges were different. These exchanges were richer and lengthier, and consisted of negotiations which related to both clinical as well as social content. The paper draws on Strauss' (1978) negotiated order theory to provide a theoretical lens to help illuminate the nature of interaction and negotiation in GIM.

Nursing emotion work and interprofessional collaboration in general internal medicine wards: a qualitative study.

AIM: This paper is a report of a study to examine nursing emotion work and interprofessional collaboration in order to understand and improve collaborative nursing practice. BACKGROUND: Nursing standards identify collaborative practice as necessary for quality patient care yet many nurses are often reluctant to participate in interprofessional teams. Strategies intended to improve participation often fail which suggests that the factors underpinning nurses' disinclination towards interprofessional collaboration have yet to be understood. The concept of emotion work has not been applied to nursing interprofessionalism, and holds the potential to improve collaborative practice. Nursing emotion work is defined as the management of the emotions of self and others in order to improve patient care. METHODS: Qualitative data were collected in 2006 using non-participant observation, shadowing and semi-structured interviews with nursing, medical and allied professionals in the general internal medicine wards of three hospitals in urban Canada. FINDINGS: Nurses' collaborations with other professionals are influenced by emotion work considerations. The establishment and maintenance of a nursing esprit de corps, corridor conflicts with physicians, and the failure of the interdisciplinary team to acknowledge the importance of nursing's core caring values are important factors underpinning nurses' interprofessional disengagement. CONCLUSION: Longstanding emotion work issues must be addressed before nurses will engage collaboratively. We suggest improving nursing collaboration through the refining of holistic nursing information, and reflections on practice by all interprofessional team members.

Factors influencing exercise participation by older adults requiring chronic hemodialysis: a qualitative study.

Despite the recognized health and psychosocial benefits of exercise for older adults with end-stage renal disease (ESRD), exercise participation remains poor. Previous research has attributed low levels of exercise to patient-related factors such as lack of motivation and fear of adverse consequences. This qualitative study involving focus group discussions with hemodialysis patients, nephrology nurses, and family care providers explored specific motivators and barriers to exercise participation in older adults requiring hemodialysis. Nurse participants were chosen for the health care provider focus groups because their prolonged and sustained contact with hemodialysis patients during the dialysis treatment sessions positions them well to encourage and promote exercise. Motivators to exercise included patient aspirations to exercise and their experiences of improvements from exercising, as well as the formal incorporation of exercise into the overall dialysis treatment plan. Barriers to exercise included nurses' lack of encouragement to exercise, transportation issues, and the use of exercise equipment that precludes participation by patients who recline during dialysis and inhibits exercise encouragement by nurses due to concerns of equipment-related injury. These findings support the need for a broader recognition of the systemic factors that may impede exercise participation by older adults requiring hemodialysis. A shift is required in the culture of ESRD treatment programs towards a wellness perspective that includes expectations of exercise encouragement by the health care team and participation by patients.

Presence redefined: The reciprocal nature of engagement between elder-clowns and persons with dementia.

Elder-clowns are a recent innovation in arts-based approaches to person-centred dementia care. They use improvisation, humour, and empathy, as well as song, dance, and music. We examined elder-clown practice and techniques through a 12-week programme with 23 long-term care residents with moderate to severe dementia in Ontario, Canada. Analysis was based on qualitative interviews and ethnographic observations of video-recorded clown-resident interactions and practice reflections. Findings highlight the reciprocal nature of clown-resident engagement and the capacity of residents to initiate as well as respond to verbal and embodied engagement. Termed relational presence, this was achieved and experienced through affective relationality, reciprocal playfulness, and coconstructed imagination. These results highlight the often overlooked capacity of individuals living with dementia to be deliberately funny, playful, and imaginative. Relational presence offers an important perspective with which to rethink care relationships between individuals living with dementia and long-term care staff.

Citizenship, human rights, and dementia: Towards a new embodied relational ethic of sexuality.

Sexual citizenship and sexual rights scholarship have made important contributions to broadening citizenship and more fully accommodating rights related to sexuality. However, this scholarship has concentrated primarily on the sexuality and intimacy-related needs of younger people and those who are not cognitively impaired. Consequently, it has inadvertently served to marginalize persons living with dementia who reside in long-term residential care settings. We argue that supporting sexual rights for persons with dementia requires a particular human rights ontology for citizenship-one that recognizes that corporeality is a fundamental source of self-expression, interdependence, and reciprocal engagement. This is an ontology that underpins our model of relational citizenship and that grounds our articulation of an ethic of embodied relational sexuality. In our view, this ethic offers important direction for the development of policy, legislation, and clinical guidelines to support sexual rights for persons with dementia in long-term residential care.

Elder-Clowning in Long-Term Dementia Care: Results of a Pilot Study.

OBJECTIVES: To assess the effects of elder-clowning on moderate to severe behavioral and psychological symptoms of dementia (BPSD) in nursing home residents with dementia, primarily of the Alzheimer's type. DESIGN: Before-and-after study. SETTING: Nursing home. PARTICIPANTS: Nursing home residents with moderate to severe BPSD, as defined according to a Neuropsychiatric Inventory-Nursing Home version (NPI-NH) score of 10 or greater (N = 23), and their care aides. INTERVENTION: A pair of elder-clowns visited all residents twice weekly (~10 minutes per visit) for 12 weeks. They used improvisation, humor, empathy, and expressive modalities such as song, musical instruments, and dance to individualize resident engagement. MEASUREMENTS: Primary outcomes were BPSD measured using the the NPI-NH, quality of life measured using Dementia Care Mapping (DCM), and nursing burden of care measured using the Modified Nursing Care Assessment Scale (M-NCAS). Secondary outcomes were occupational disruptiveness measured using the NPI-NH, agitation measured using the Cohen Mansfield Agitation Inventory (CMAI), and psychiatric medication use. RESULTS: Over 12 weeks, NPI-NH scores declined significantly (t22 = -2.68, P = .01), and DCM quality-of-life scores improved significantly (F1,50 = 23.09, P < .001). CMAI agitation scores decreased nominally, but the difference was not statistically significant (t22 = -1.86, P = .07). Occupational disruptiveness score significantly improved (t22 = -2.58, P = .02), but there was no appreciable change in M-NCAS scores of staff burden of care. CONCLUSION: Results suggest that elder-clowning reduced moderate to severe BPSD of nursing home residents with dementia, primarily of the Alzheimer's type. Elder-clowning is a promising intervention that may improve Alzheimer's disease care for nursing home residents.

Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices.

In the last three decades, mothers of children who have chronic illnesses or disabilities have been studied extensively. With some notable exceptions, most research has overlooked the socio-political context of disability and has interpreted maternal behaviours and feelings in negative or psychopathological terms. In this paper we report the results of using Pierre Bourdieu's central concepts to reanalyse three independent qualitative studies focused on mothers' accounts of raising children with severe disabling conditions. We illustrate the logic of mothers' practices and conclude that they represent strategic manipulations of accessible bodily, cultural and symbolic capital consistent with the 'rules of the game' across multiple fields. Mothers struggled to establish and maintain the personhood and value of their children, and to obtain resources within a broader context of body normativeness, exclusion and inequity. This Bourdieusian rendering of the logic of maternal practices has important implications for research and paediatric practices.

Managing space and marking time: mothering severely ill infants in hospital isolation.

In this study, mothers retrospectively describe their experiences of prolonged protective isolation with infants hospitalized for severe combined immune deficiency. Mothers (N = 5) spent approximately 10 hours every day for 10.5 months in an 11-foot-square isolation room. Dressed in masks and surgical garb, they cared for their infants but were prohibited from engaging in skin contact. Although the rooms' characteristics and regulations remained fixed, mothers' sociospatial experiences varied dramatically over the course of the infants' treatment trajectories. The findings illustrate how place, space, and time affect women's well-being and their social and mothering relations in health care settings.

Recruitment issues in healthcare research: the situation in home care.

A global shift in the setting of healthcare from hospitals and long-term care institutions to homes and communities has been accompanied by the growth of interest in the home as a site of healthcare research. Home care researchers have identified the recruitment of research subjects as a significant concern. The present descriptive, exploratory study used qualitative, semi-structured interviews with home care researchers (n = 9) to illuminate the challenges related to recruitment. The results suggest that while home care research shares recruitment issues common to other forms of health research, it has unique concerns. Factors affecting recruitment in home care studies include non-dedicated recruiters, the current context of healthcare restructuring, and gatekeeper and participant feelings about the home as a setting for care and research. Reasons for refusal to participate may be more complex in home care research given the meanings care recipients attribute to their 'homes'. Home care researchers may also face unique ethical and/or moral dilemmas. This paper recommends the routine reporting of recruitment problems, increased inclusion of minority subjects to ensure sample representativeness and further studies of the subjective meanings of 'home' as it is associated with healthcare treatment.

Home is where their wheels are: experiences of women wheelchair users.

This paper examines the experiences of mothers who are wheelchair users in their roles of homemaking and parenting. A qualitative study using in-depth, focused interviews was conducted with a purposeful sample of 11 women with various physical disabilities. Three major themes were uncovered in the data: (a) lived space restricting personal autonomy, (b) advocacy strategies to secure appropriate housing, and (c) my wheelchair, my liberator, my sense of comfort. Findings from this study showed that women did not have the freedom or economic resources to seek out new living arrangements or make modifications to existing environments. Lack of space, stairs, difficult-to-reach spaces, poor transportation, and limited community access were barriers that women experienced. The study also points to the importance of recognizing that the women used many strategies to regain control over aspects of their environment to enable greater autonomy and participation for themselves. Sensitivity to the meaning of home and the relationship between the body and the environmental features that surround it may be a significant contribution of the clinician as he or she seeks to assist women wheelchair users.

Grief, Anger, and Relationality: The Impact of a Research-Based Theater 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.