Heather Beanlands

Structure of lifestyle disruptions in chronic disease: a confirmatory factor analysis of the Illness Intrusiveness Ratings Scale.

Background.The Illness Intrusiveness Ratings Scale (IIRS) measures the extent to which disease or its treatment or both interfere with activities in important life domains. Before comparing IIRS scores within or across groups it is crucial to determine whether a common underlying factor structure exists across patient populations. Objective.To investigate the factor structure underlying the IIRS and evaluate its stability across diagnoses. Methods.IIRS responses from 5,671 respondents were pooled from 15 separate studies concerning quality of life in eight patient groups: rheumatoid arthritis; osteoarthritis; systemic lupus erythematosus; multiple sclerosis; end-stage renal disease (maintenance dialysis); renal transplantation; heart, liver, and lung transplantation; and insomnia. Data were gathered by different methods (eg, interview, self-administered, mail survey) and in diverse contexts (eg, individual vs. group). Results.Exploratory maximum-likelihood factor analysis identified three underlying factors in a randomly selected subset of respondents (n = 400), corresponding to “Relationships and Personal Development,” “Intimacy,” and “Instrumental” life domains. Confirmatory factor analysis corroborated the stability of this structure in an independent subsample (n = 2100). Complementary goodness-of-fit indices confirmed the consistency of the three-factor solution, corroborating that IIRS scores are uniquely defined across patient populations. Coefficient alpha was high for total and subscale scores. Conclusions.IIRS scores can be compared meaningfully within and across patient groups. Both total and subscale scores can be used depending on research objectives.

Effects of the Characteristics of Teaching on the Outcomes of Heart Failure Patient Education Interventions: A Systematic Review

Background: Limited research has examined the specific approach, mode of delivery, and dose of educational interventions. Yet such knowledge is essential to develop effective heart failure educational interventions. Aims and methods: The intent of this systematic review was to determine what approach, mode, and dose is most effective in producing changes in heart failure patient education. The sample included 69 studies involving 1865 study participants. Results: Findings indicate the most effective means for delivery heart failure patient education is through the individualization of content, the use of combined mediums for delivery, provision of education on a one-on-one basis, and in multiple sessions. Conclusion: These results highlight the need to redesign current heart failure patient education initiatives to enhance patient outcomes.

Approaches to Self‐Management in Chronic Illness

Management of a chronic medical condition is a complex process and requires coordinated action between healthcare providers and patients. This process is further complicated by the fact that an increasing number of patients suffer from multiple chronic conditions. Self‐management involves active participation of the patients in the everyday care of the symptoms of their illness(es) and medical treatments, as well as maintaining general health and prevention of progression of medical conditions. Managing the psychosocial consequences of illness is also an important component of self‐management. Data have demonstrated that enhancing self‐management improves quality of life, coping, symptom management, disability, and reduces healthcare expenditures and service utilization. To foster self‐management, potential barriers to implementation as well as facilitators and supports for this approach must be acknowledged. In this article, we review various aspects of self‐management in chronic illness, focusing on chronic kidney disease. Better understanding of these concepts will facilitate patient–provider collaboration, improve patient care with increased patient and staff satisfaction, and may ultimately result in better clinical outcomes and enhanced quality of life for both the patients and their families.

A group intervention to promote healthy self-concepts and guide recovery in first episode schizophrenia: A pilot study.

The stress associated with managing a first episode of schizophrenia and the secondary psychological sequelae may predispose young people to the phenomenon of illness engulfment, whereby personal identity is lost and replaced with a sense of self defined entirely by the illness. The overall objective of this pilot project was to provide an initial evaluation of the impact of a novel group intervention targeting improvement of self-concept (engulfment) and overall quality of life for young adults recovering from a first episode of schizophrenia. Fifty-two young adults diagnosed with a DSM-IV schizophrenia spectrum disorder were sequentially assigned to either a 12-week group intervention that provided members with opportunities to attain healthy self-concepts or a control group that received high quality treatment as usual. The two groups were compared on pretreatment, post-treatment, and 3-month post-treatment measures of engulfment, quality of life, and psychiatric symptoms. Allowing for dropouts, 26 subjects remained in the treatment group and 14 subjects in the control group after the 3-month follow-up. Participants in the treatment group demonstrated significant improvement in engulfment, quality of life (intrapsychic subscale) and symptoms, while the comparison group did not change. These preliminary results provide support for the benefits of a group intervention designed to enhance self-concept and to minimize the engulfing effects of illness.

A randomised controlled trial of a group intervention to reduce engulfment and self-stigmatisation in first episode schizophrenia

Abstract Young people coping with first episode schizophrenia may be predisposed to illness engulfment whereby the illness entirely defines self-concept. They require psychosocial intervention to preserve an identity distinct from illness, promote hopefulness, and minimise the impact of stigma, enabling them to embrace a healthy sense of self and an optimistic future. The purpose of this study was to evaluate a group intervention designed to promote healthy self-concepts by reducing self-stigmatisation and engulfment among young adults recovering from first episode schizophrenia. Participants at two first episode psychosis clinics, one in Toronto and one in Ottawa, were assigned to one of two groups: intervention plus treatment as usual, or a control with only treatment as usual. A repeated measures analysis revealed that immediately post-intervention, the treatment group significantly improved on engulfment, hope, and quality of life measures compared with the control. No improvement was observed in self-concept, self-esteem, self-efficacy, and stigma. Intervening early in the course of the illness to address engulfment and self-stigmatisation may enable young people to acquire positive attitudes toward themselves and the future. Future longitudinal data are needed to determine whether this intervention will prevent the development of chronicity and demoralisation over time.

A cyborg ontology in health care: traversing into the liminal space between technology and person-centred practice

Person-centred practice indubitably seems to be the antithesis of technology. The ostensible polarity of technology and person-centred practice is an easy road to travel down and in their various forms has been probably travelled for decades if not centuries. By forging ahead or enduring these dualisms, we continue to approach and recede, but never encounter the elusive and the liminal space between technology and person-centred practice. Inspired by Haraways work, we argue that healthcare practitioners who critically consider their cyborg ontology may begin the process to initiate and complicate the liminal and sought after space between technology and person-centred practice. In this paper, we draw upon Haraways idea that we are all materially and ontologically cyborgs. Cyborgs, the hybridity of machine and human, are part of our social reality and embedded in our everyday existence. By considering our cyborg ontology, we suggest that person-centred practice can be actualized in the contextualized, embodied and relational spaces of technology. It is not a question of espousing technology or person-centred practice. Such dualisms have been historically produced and reproduced over many decades and prevented us from recognizing our own cyborg ontology. Rather, it is salient that we take notice of our own cyborg ontology and how technological, habitual ways of being may prevent (and facilitate) us to recognize the embodied and contextualized experiences of patients. A disruption and engagement with the habitual can ensure we are not governed by technology in our logics and practices of care and can move us to a conscious and critical integration of person-centred practice in the technologized care environments. By acknowledging ourselves as cyborgs, we can recapture and preserve our humanness as caregivers, as well as thrive as we proceed in our technological way of being.Person-centred practice indubitably seems to be the antithesis of technology. The ostensible polarity of technology and person-centred practice is an easy road to travel down and in their various forms has been probably travelled for decades if not centuries. By forging ahead or enduring these dualisms, we continue to approach and recede, but never encounter the elusive and the liminal space between technology and person-centred practice. Inspired by Haraways work, we argue that healthcare practitioners who critically consider their cyborg ontology may begin the process to initiate and complicate the liminal and sought after space between technology and person-centred practice. In this paper, we draw upon Haraways idea that we are all materially and ontologically cyborgs. Cyborgs, the hybridity of machine and human, are part of our social reality and embedded in our everyday existence. By considering our cyborg ontology, we suggest that person-centred practice can be actualized in the contextualized, embodied and relational spaces of technology. It is not a question of espousing technology or person-centred practice. Such dualisms have been historically produced and reproduced over many decades and prevented us from recognizing our own cyborg ontology. Rather, it is salient that we take notice of our own cyborg ontology and how technological, habitual ways of being may prevent (and facilitate) us to recognize the embodied and contextualized experiences of patients. A disruption and engagement with the habitual can ensure we are not governed by technology in our logics and practices of care and can move us to a conscious and critical integration of person-centred practice in the technologized care environments. By acknowledging ourselves as cyborgs, we can recapture and preserve our humanness as caregivers, as well as thrive as we proceed in our technological way of being.

A relationship-based intervention to improve social connectedness in street-involved youth: a pilot study.

PROBLEM Street-involved youth experience a range of mental health problems with elevated rates of psychiatric disorders compared with non-homeless youth. The overall objective of this pilot study was to evaluate the impact of a relationship-based intervention for homeless youth receiving services from agencies in downtown Toronto. METHODS The final sample included 15 homeless youth who met the study inclusion criteria. The intervention and comparison groups were compared at baseline and post-treatment on measures of mental health symptoms, hopelessness, self-esteem, resilience, and social connectedness. FINDINGS Participants receiving the intervention demonstrated a significant improvement in social connectedness, with a trend toward decreased hopelessness. Those participants who did not receive the intervention did not demonstrate any improvements in social connectedness and hopelessness. CONCLUSION This preliminary pilot study suggests that providing a relationship-based intervention to street-involved youth may offer promise to strengthen social relationships and to mitigate overwhelming hopelessness and despair.

Discussion of patient-centered care in health care organizations.

The tradition of inherent knowledge and power of health care providers stands in stark contrast to the principles of self-determination and patient participation in patient-centered care. At the organizational level, patient-centered care is a merging of patient education, self-care, and evidence-based models of practice and consists of 4 broad domains of intervention including communication, partnerships, health promotion, and physical care. As a result of the unexamined discourse of knowledge and power in health care, the possibilities of patient-centered care have not been fully achieved. In this article, we used a critical social theory lens to examine the discursive influence of power upon the integration of patient-centered care into health care organizations. We begin with an overview of patient-centered care, followed by a discussion of the various ways that it has been introduced into health care organizations. We proceed by deconstructing the inherent power and knowledge of health care providers and shed light on how these long-standing traditions have impeded the integration of patient-centered care. We conclude with a discussion of viable solutions that can be used to implement patient-centered care into health care organizations. This article presents a perspective through which the integration of patient-centered care into health organizations can be examined.

Self-monitoring of blood glucose in Black Caribbean and South Asian Canadians with non-insulin treated Type 2 diabetes mellitus: a qualitative study of patients' perspectives.

BackgroundTo examine the views and current practice of SMBG among Black Caribbean and South Asian individuals with non-insulin treated Type 2 diabetes mellitus.MethodsTwelve participants completed semi-structured interviews that were guided by the Health Belief Model and analyzed using thematic network analysis.ResultsThe frequency of monitoring among participants varied from several times a day to once per week. Most participants expressed similar experiences regarding their views and practices of SMBG. Minor differences across gender and culture were observed. All participants understood the benefits, but not all viewed SMBG as beneficial to their personal diabetes management. SMBG can facilitate a better understanding and maintenance of self-care behaviours. However, it can trigger both positive and negative emotional responses, such as a sense of disappointment when high readings are not anticipated, resulting in emotional distress. Health care professionals play a key role in the way SMBG is perceived and used by patients.ConclusionWhile the majority of participants value SMBG as a self-management tool, barriers exist that impede its practice, particularly its cost. How individuals cope with these barriers is integral to understanding why some patients adopt SMBG more than others.

Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD): Form and Function

Purpose of review This article serves to describe the Can-SOLVE CKD network, a program of research projects and infrastructure that has excited patients and given them hope that we can truly transform the care they receive. Issue Chronic kidney disease (CKD) is a complex disorder that affects more than 4 million Canadians and costs the Canadian health care system more than