Navigation programs to support community-dwelling individuals with life-limiting illness: determinants of implementation.

BACKGROUND: As the Canadian population ages and the prevalence of chronic illnesses increases, delivering high-quality care to individuals with advanced life limiting illnesses becomes more challenging. Community-based navigation programs are a promising approach to address these challenges, but little is known about how these programs are successfully implemented to meet the needs of this population. This study sought to identify the key determinants that contribute to the successful implementation of these programs within Canada. METHODS: A qualitative study was undertaken to understand the implementation of eleven innovative, community-based navigation programs that aim to address the needs of individuals with life-limiting illnesses as they approach the end of life. The Consolidated Framework for Implementation Research (CFIR) guided the study design. Key informants (n = 23) within these programs took part in semi-structured interviews where they were asked to discuss how these programs are implemented. Data were analyzed using techniques employed in qualitative description. RESULTS: We identified key determinants of successful implementation within each CFIR domain. In the outer setting domain, participants emphasized the importance of filling gaps in care to meet client needs, developing strong relationships with clients and community-based organizations, and navigating relationships with healthcare providers. At the inner setting level, leadership support, staff compatibility, and available resources were identified as important factors. In terms of intervention characteristics, the ability to adapt was cited as a facilitator, whereas costs were identified as a barrier. For the characteristics of individuals, participants described the importance of having staff whose values align with the program, and who have the experience and skills necessary to work with complex clients. Finally, having strong champions and evaluation processes were highlighted as important process-oriented determinants of successful implementation. CONCLUSION: This study provides valuable insights into the determinants of successful implementation of community-based navigation programs in Canada. Understanding these determinants can guide the future development and integration of navigation programs to successfully meet the needs of those with life-limiting illnesses.

How do navigation programs address the needs of those living in the community with advanced, life-limiting Illness? A realist evaluation of programs in Canada.

BACKGROUND: We sought to identify innovative navigation programs across Canadian jurisdictions that target their services to individuals affected by life-limiting illness and their families, and articulate the principal components of these programs that enable them to address the needs of their clients who are living in the community. METHODS: This realist evaluation used a two-phased approach. First, we conducted a horizon scan of innovative community-based navigation programs across Canadian jurisdictions to identify innovative community-based navigation programs that aim to address the needs of community-dwelling individuals affected by life-limiting illness. Second, we conducted semi-structured interviews with key informants from each of the selected programs. Informants included individuals responsible for managing and delivering the program and decision-makers with responsibility and/or oversight of the program. Analyses proceeded in an iterative manner, consistent with realist evaluation methods. This included iteratively developing and refining Context-Mechanism-Outcome (CMO) configurations, and developing the final program theory. RESULTS: Twenty-seven navigation programs were identified from the horizon scan. Using specific eligibility criteria, 11 programs were selected for subsequent interviews and in-depth examination. Twenty-three participants were interviewed from these programs, which operated in five Canadian provinces. The programs represented a mixture of community (non-profit or volunteer), research-initiated, and health system programs. The final program theory was articulated as: navigation programs can improve client outcomes if they have supported and empowered staff who have the time and flexibility to personalize care to the needs of their clients. CONCLUSIONS: The findings highlight key principles (contexts and mechanisms) that enable navigation programs to develop client relationships, personalize care to client needs, and improve client outcomes. These principles include staff (or volunteer) knowledge and experience to coordinate health and social services, having a point of contact after hours, and providing staff (and volunteers) time and flexibility to develop relationships and respond to individualized client needs. These findings may be used by healthcare organizations - outside of navigation programs - to work towards more person-centred care.

Item selection, scaling and construct validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) measurement tool in adults.

PURPOSE: To select and scale items for the seven domains of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) and assess its construct validity. METHODS: Using an online survey, data on 100 potential items, and other variables for assessing construct validity, were collected from 1055 adults with one or more chronic health conditions. Based on a validated conceptual model, confirmatory factor analysis (CFA) and item response models (IRT) were used to select and scale potential items and assess the internal consistency and structural validity of the PRISM-CC. To further assess construct validity, hypothesis testing of known relationships was conducted using structural equation models. RESULTS: Of 100 potential items, 36 (4-8 per domain) were selected, providing excellent fit to our hypothesized correlated factors model and demonstrating internal consistency and structural validity of the PRISM-CC. Hypothesized associations between PRISM-CC domains and other measures and variables were confirmed, providing further evidence of construct validity. CONCLUSION: The PRISM-CC overcomes limitations of assessment tools currently available to measure patient self-management of chronic health conditions. This study provides strong evidence for the internal consistency and construct validity of the PRISM-CC as an instrument to assess patient-reported difficulty in self-managing different aspects of daily life with one or more chronic conditions. Further research is needed to assess its measurement equivalence across patient attributes, ability to measure clinically important change, and utility to inform self-management support.

Patient perspectives on primary care for multimorbidity: An integrative review.

INTRODUCTION: Improving healthcare for people with multiple chronic or ongoing conditions is receiving increased attention, particularly due to the growing number of people experiencing multimorbidity (MM) and concerns about the sustainability of the healthcare system. Primary care has been promoted as an important resource for supporting people with MM to live well with their conditions and to prevent unnecessary use of health care services. However, traditional primary care has been criticized for not centring the needs and preferences of people with MM themselves. Our aim was to conduct a review that centred on the perspective of people with MM in multiple ways, including having patient partners co-lead the design, conduct and reporting of findings, and focusing on literature that reported the perspective of people with MM, irrespective of it being experimental or nonexperimental. METHODS: We searched for published literature in CINAHL with Full Text (EBSCOhost) and MEDLINE All (Ovid). Findings from experimental and nonexperimental studies were integrated into collaboration with patient partners. RESULTS: Twenty-nine articles were included in the review. Findings are described in five categories: (1) Care that is tailored to my unique situation; (2) meaningful inclusion in the team; (3) a healthcare team that is ready and able to address my complex needs; (4) supportive relationships and (5) access when and where I need it. CONCLUSION: This review supports a reorientation of primary care systems to better reflect the experiences and perspectives of people with MM. This can be accomplished by involving patient partners in the design and evaluation of primary care services and incentivizing collaboration among health and social supports and services for people with MM. PATIENT OR PUBLIC CONTRIBUTION: Patient partners were involved in the design and conduct of this review, and in the preparation of the manuscript. Their involvement is further elucidated in the manuscript text.

How do inner and outer settings affect implementation of a community-based innovation for older adults with a serious illness: a qualitative study.

BACKGROUND: Implementing community-based innovations for older adults with serious illness, who are appropriate for a palliative approach to care, requires developing partnerships between health and community. Nav-CARE is an evidence-based innovation wherein trained volunteer navigators advocate, facilitate community connections, coordinate access to resources, and promote active engagement of older adults within their communities. Acknowledging the importance of partnerships between organizations, the aim of our study was to use the Consolidated Framework for Implementation Research (CFIR) to explore organizational (Inner Setting) and community or health system level (Outer Setting) barriers and facilitators to Nav-CARE implementation. METHODS: Guided by CFIR, qualitative individual and group interviews were conducted to examine the implementation of Nav-CARE in a Canadian community. Participants were individuals who delivered or managed Nav-CARE research, and stakeholders who provided services in the community. The Framework Method was used to analyse the data. Particular attention was paid to the host organization's external network and community context. RESULTS: Implementation was affected by several inter-related CFIR domains, making it difficult to meaningfully separate key findings by only inner and outer settings. Thus, findings were organized into themes informed by CFIR, that cut across other domains and incorporated inductive findings: intraorganizational perceptions of Nav-CARE; public and healthcare professionals' perceptions of palliative care; interorganizational partnerships and relationships; community and national-level factors that should have facilitated Nav-CARE implementation; and suggested changes to Nav-CARE. Themes demonstrated barriers to implementing Nav-CARE, such as poor organizational readiness for implementation, and public and health provider perceptions palliative care was synonymous with fast-approaching death. CONCLUSIONS: Implementation science frameworks and theories commonly focus on assessing implementation of innovations within facilities and changing behaviours of individuals within that organizational structure. Implementation frameworks need to be adapted to better assess Outer Setting factors that affect implementation of community-based programs. Although applying the CFIR helped uncover critical elements in the Inner and Outer Settings that affected implementation of Nav-CARE. Our study suggests that the CFIR could expand the Outer Setting to acknowledge and assess organizational structures and beliefs of individuals within organizations external to the host organization who impact successful implementation of community-based innovations.

Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis.

BACKGROUND: An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life. A realist synthesis was conducted to understand how multi-level contexts affect case management functions related to initiating end-of-life conversations, assessing patient and caregiver needs, and patient/family centred planning in primary care practices to improve outcomes. The synthesis also explored how these functions aligned with critical community resources identified by patients/families dealing with end-of-life. METHODS: A realist synthesis is theory driven and iterative, involving the investigation of proposed program theories of how particular contexts catalyze mechanisms (program resources and individual reactions to resources) to generate improved outcomes. To assess whether program theories were supported and plausible, two librarian-assisted and several researcher-initiated purposive searches of the literature were conducted, then extracted data were analyzed and synthesized. To assess relevancy, health system partners and family advisors informed the review process. RESULTS: Twenty-eight articles were identified as being relevant and evidence was consolidated into two final program theories: 1) Making end-of-life discussions comfortable, and 2) Creating plans that reflect needs and values. Theories were explored in depth to assess the effect of multi-level contexts on primary care practices implementing tools or frameworks, strategies for improving end-of-life communications, or facilitators that could improve advance care planning by primary care practitioners. CONCLUSIONS: Primary care practitioners' use of tools to assess patients/families' needs facilitated discussions and planning for end-of-life issues without specifically discussing death. Also, receiving training on how to better communicate increased practitioner confidence for initiating end-of-life discussions. Practitioner attitudes toward death and prior education or training in end-of-life care affected their ability to initiate end-of-life conversations and plan with patients/families. Recognizing and seizing opportunities when patients are aware of the need to plan for their end-of-life care, such as in contexts when patients experience transitions can increase readiness for end-of-life discussions and planning. Ultimately conversations and planning can improve patients/families' outcomes.

An exploration of Canadian transitional care programs for older adults.

Transitional care programs are effective for improving patient outcomes upon discharge from acute care services and reducing the burden of healthcare costs; however, little is known about the types of transitional care programs for older adults across Canada. This exploratory study gathered an in-depth understanding of Canadian transitional care programs and described how each program functions to support older adults and family/friend caregivers. Nine key informants were interviewed about the development of transitional care programs within four Canadian provincial regions including Atlantic, Central, Prairie, and West Coast. Key facilitators and barriers influencing the development and long-term success of transitional care programs included program scope, program structure, continuity of care, funding, and health system infrastructure. Future research is required to identify how a broad range of transitional care programs operate and to disseminate knowledge with health leaders and decision-makers to ensure transitional care programs are embedded as essential health system services.

Home care clients: a research protocol for studying their pathways.

BACKGROUND: Enhancing non-clinical home care supports and services for older adults to live well is a strategic priority in developed countries, including Canada. Underpinning these supports and services are structures of care that are reflected in home care policies, programs and practices within jurisdictions. These approaches to care exist at multiple levels and inform interactions, perceptions, and care assessment, planning and provision, ultimately shaping the supports that are delivered. Jurisdictional differences in approaches to care mean that pathways through home care systems may differ, depending on where one lives. The goal of this study is to understand how approaches to care shape the pathways of older adult home care clients with chronic and long term conditions in two Canadian health jurisdictions. METHODS: This longitudinal mixed-methods study has three interrelated research streams informed by aspects of the socio-ecological framework. We will examine client pathways using a retrospective analysis of home care assessment data (Resident Assessment Instrument- Home Care) in two health authorities (Client/Service Data Stream). We will analyze interview data from older adult home care clients and a cluster of each client's family or friend caregiver(s), home support worker(s), care/case coordinator(s) and potentially other professionals at up to three points over 18 months using a prospective qualitative comparative case study design (Constellation Data Stream). We will review home care policies relevant to both health authorities and interview key informants regarding the creation and implementation of policies (Policy Stream). Our study will apply an integrated knowledge translation (iKT) approach that engages knowledge users in research design, analysis and interpretation to facilitate relevancy of results. DISCUSSION: Applying a mixed-method research design to understand approaches to care within and between two jurisdictions will contribute to the evidence base on older adult home care client pathways. Study results will identify how potential differences are experienced by clients and their families. An understanding of the policies will help to contextualize these findings. The iKT model will ensure that findings are useful for strategic planning and decision-making, and supporting changes in care practice.

Implementing volunteer-navigation for older persons with advanced chronic illness (Nav-CARE): a knowledge to action study.

BACKGROUND: Nav-CARE is a volunteer-led intervention designed to build upon strategic directions in palliative care: a palliative approach to care, a public health/compassionate community approach to care, and enhancing the capacity of volunteerism. Nav-CARE uses specially trained volunteers to provide lay navigation for older persons and family living at home with advanced chronic illness. The goal of this study was to better understand the implementation factors that influenced the utilization of Nav-CARE in eight diverse Canadian contexts. METHODS: This was a Knowledge to Action study using the planned action cycle for Nav-CARE developed through previous studies. Participants were eight community-based hospice societies located in diverse geographic contexts and with diverse capacities. Implementation data was collected at baseline, midpoint, and endpoint using qualitative individual and group interviews. Field notes of all interactions with study sites were also used as part of the data set. Data was analyzed using qualitative descriptive techniques. The study received ethical approval from three university behavioural review boards. All participants provided written consent. RESULTS: At baseline, stakeholders perceived Nav-CARE to be a good fit with the strategic directions of their organization by providing early palliative support, by facilitating outreach into the community and by changing the public perception of palliative care. The contextual factors that determined the ease with which Nav-CARE was implemented included the volunteer coordinator champion, organizational capacity and connection, the ability to successfully recruit older persons, and the adequacy of volunteer preparation and mentorship. CONCLUSIONS: This study highlighted the importance of community-based champions for the success of volunteer-led initiatives and the critical need for support and mentorship for both volunteers and those who lead them. Further, although the underutilization of hospice has been widely recognized, it is vital to recognize the limitations of their capacity. New initiatives such as Nav-CARE, which are designed to enhance their contributions to palliative care, need to be accompanied by adequate resources. Finally, this study illustrated the need to think carefully about the language and role of hospice societies as palliative care moves toward a public health approach to care.

A mixed-method evaluation of a volunteer navigation intervention for older persons living with chronic illness (Nav-CARE): findings from a knowledge translation study.

BACKGROUND: Volunteer navigation is an innovative way to help older persons get connected to resources in their community that they may not know about or have difficulty accessing. Nav-CARE is an intervention in which volunteers, who are trained in navigation, provide services for older persons living at home with chronic illness to improve their quality of life. The goal of this study was to evaluate the impact of Nav-CARE on volunteers, older persons, and family participating across eight Canadian sites. METHODS: Nav-CARE was implemented using a knowledge translation approach in eight sites using a 12- or 18-month intervention period. A mixed method evaluation was used to understand the outcomes upon older person engagement; volunteer self-efficacy; and older person, family, and volunteer quality of life and satisfaction with the intervention. RESULTS: Older persons and family were highly satisfied with the intervention, citing benefits of social connection and support, help with negotiating the social aspects of healthcare, access to cost-effective resources, and family respite. They were less satisfied with the practical help available for transportation and errands. Older persons self-reported knowledge of the services available to them and confidence in making decisions about their healthcare showed statistically significant improvements (P < .05) over 12-18 months. Volunteers reported satisfaction with their role, particularly as it related to building relationships over time, and good self-efficacy. Volunteer attrition was a result of not recruiting older persons in a timely manner. There was no statistically significant improvement in quality of life for older persons, family or volunteers from baseline to study completion. CONCLUSIONS: Findings from this study support a developing body of evidence showing the contributions volunteers make to enhanced older person and family well-being in the context of chronic illness. Statistically significant improvements were documented in aspects of client engagement. However, there were no statistically significant improvements in quality of life scores even though qualitative data illustrated very specific positive outcomes of the intervention. Similar findings in other volunteer-led intervention studies raise the question of whether there is a need for targeted volunteer-sensitive outcome measures.

Sustainability of a rural volunteer program (Nav-CARE): a case study.

INTRODUCTION: Nav-CARE (Navigation: Connecting, Accessing, Resourcing and Engaging) is an evidence-based program that was implemented over 1 year in a rural community in western Canada. Nav-CARE uses volunteers who are trained in navigation to facilitate access to resources and provide social support to older persons living in the community with serious illness such as cancer, congestive heart failure and chronic obstructive pulmonary disease. Following implementation in which Nav-CARE was found to be feasible, acceptable and have positive outcomes, Nav-CARE was integrated into the local community-based hospice society program. Two years after a successful implementation, it continued to be sustainable in this same rural community. The purpose of this study was to explore the key factors that facilitated the sustainability of Nav-CARE in a rural hospice society. METHODS: A qualitative single case study design was used with data from several sources collected at different times: (a) pre-implementation, (b) Nav-CARE program implementation (1-year time period), (c) immediately after implementation and (d) 6 months to 2 years after implementation). Data included individual interviews with community stakeholders (n=9), the study volunteer coordinator (n=1), hospice society coordinator (n=1) and Nav-CARE volunteers (n=9). It also included meeting notes of volunteer debriefing sessions and meetings with stakeholders planning for sustainability of Nav-CARE that were held during the 1-year implementation. Data were organized using the i-PARIHS (integrated Promoting Action on Research Implementation in Health Services) framework (a well known implementation framework). Data were analyzed using Yin's qualitative case study approach. RESULTS: The findings from this case study suggested that key factors in facilitating sustainability of a rural community intervention (Nav-CARE) were the organizational context (inner context) and facilitation (facilitator and facilitation processes). Additionally, the inner context included the fit of Nav-CARE with the organization's priorities, the absorptive capacity of the organization, and organizational structure and mechanisms to integrate Nav-CARE into current programs. The hospice society was well established and supported by the rural community. The role of the facilitator and the planned facilitation processes (training of volunteer navigators, ongoing support and planning events) were key factors in the sustainability of the Nav-CARE program. The findings found that the formal role of the facilitator in the implementation and sustainability of Nav-CARE in this rural community required skills and knowledge, as well as ongoing mentorship. As well, the facilitation process for Nav-CARE included formal sustainability planning meetings involving stakeholders. CONCLUSION: Using the i-PARIHS framework and a case study approach, key factors for facilitating sustainability were identified. The role of the facilitator, the facilitation processes and the characteristics of the organizational context were important for the sustainability of Nav-CARE. Future research is needed to understand how to assess and enhance an organization's sustainability capacity and the impact of additional facilitator training and mentoring. This study provides a foundation for future research and adds to the discussion of the issue of sustainability of evidence-based interventions in rural community settings.

The structural and convergent validity of three commonly used measures of self-management in persons with neurological conditions.

PURPOSE: Self-management ability is commonly assessed in chronic disease research and clinical practice. The purpose of this study was to assess the structural and convergent validity of three commonly used self-management outcome measures in a sample of persons with neurological conditions. METHODS: We used data from a Canadian survey of persons with neurological conditions, which included three commonly used self-management measures: the Partners in Health Scale (PIH), the Patient Activation Measure (PAM), and the Self-Efficacy for Managing a Chronic Disease Scale (SEMCD). Confirmatory factor analysis was used to assess the structural and convergent validity of the three measures. RESULTS: When treated as single-factor constructs, none of the measurement models provided a good fit to the data. A four-domain version of the PIH was the best fitting model. Confirmatory factor analysis suggests that the three tools measure different, but correlated constructs. CONCLUSIONS: While the PAM, PIH and SEMCD scales are all used as measures of patient self-management, our study indicates that they measure different, but correlated latent variables. None, when treated as single, uni-dimensional construct, provides an acceptable fit to our data. This is probably because self-management is multi-dimensional, as is consistently shown by qualitative evidence. While these measures may provide reliable summative measures, multi-dimensional scales are needed for clinical use and more detailed research on self-management.

Applying the consolidated framework for implementation research to identify barriers affecting implementation of an online frailty tool into primary health care: a qualitative study.

BACKGROUND: Frailty is associated with multi-system deterioration, and typically increases susceptibility to adverse events such as falls. Frailty can be better managed with early screening and intervention, ideally conducted in primary health care (PHC) settings. This study used the Consolidated Framework for Implementation Research (CFIR) as an evaluation framework during the second stage piloting of a novel web-based tool called the Frailty Portal, developed to aid in the screening, identification, and care planning of frail patients in community PHC. METHODS: This qualitative study conducted semi-structured key informant interviews with a purposive sample of PHC providers (family physicians, nurse practitioners) and key PHC stakeholders who were administrators, decision makers and staff. The CFIR was used to guide data collection and analysis. Framework Analysis was used to determine the relevance of the CFIR constructs to implementing the Frailty Portal. RESULTS: A total of 17 interviews were conducted. The CFIR-inspired interview questions helped clarify critical aspects of implementation that need to be addressed at multiple levels if the Frailty Portal is to be successfully implemented in PHC. Finding were organized into three themes 1) PHC Practice Context, 2) Intervention attributes affecting implementation, and 3) Targeting providers with frail patients. At the intervention level the Frailty Portal was viewed positively, despite the multi-level challenges to implementing it in PHC practice settings. Provider participants perceived high opportunity costs to using the Frailty Portal due to changes they needed to make to their practice routines. However, those who had older patients, took the time to learn how to use the Frailty Portal, and created processes for sharing tasks with other PHC personnel become proficient at using the Frailty Portal. CONCLUSIONS: Structuring our evaluation around the CFIR was instrumental in identifying multi-level factors that will affect large-scale adoption of the Frailty Portal in PHC practices. Incorporating CFIR constructs into evaluation instruments can flag factors likely to impede future implementation and impact the effectiveness of innovative practices. Future research is encouraged to identify how best to facilitate changes in PHC practices to address frailty and to use implementation frameworks that honor the complexity of implementing innovations in PHC.

On Effective Graphic Communication of Health Inequality: Considerations for Health Policy Researchers.

Policy Points: Effective graphs can be a powerful tool in communicating health inequality. The choice of graphs is often based on preferences and familiarity rather than science. According to the literature on graph perception, effective graphs allow human brains to decode visual cues easily. Dot charts are easier to decode than bar charts, and thus they are more effective. Dot charts are a flexible and versatile way to display information about health inequality. Consistent with the health risk communication literature, the captions accompanying health inequality graphs should provide a numerical, explicitly calculated description of health inequality, expressed in absolute and relative terms, from carefully thought-out perspectives. CONTEXT: Graphs are an essential tool for communicating health inequality, a key health policy concern. The choice of graphs is often driven by personal preferences and familiarity. Our article is aimed at health policy researchers developing health inequality graphs for policy and scientific audiences and seeks to (1) raise awareness of the effective use of graphs in communicating health inequality; (2) advocate for a particular type of graph (ie, dot charts) to depict health inequality; and (3) suggest key considerations for the captions accompanying health inequality graphs. METHODS: Using composite review methods, we selected the prevailing recommendations for improving graphs in scientific reporting. To find the origins of these recommendations, we reviewed the literature on graph perception and then applied what we learned to the context of health inequality. In addition, drawing from the numeracy literature in health risk communication, we examined numeric and verbal formats to explain health inequality graphs. FINDINGS: Many disciplines offer commonsense recommendations for visually presenting quantitative data. The literature on graph perception, which defines effective graphs as those allowing the easy decoding of visual cues in human brains, shows that with their more accurate and easier-to-decode visual cues, dot charts are more effective than bar charts. Dot charts can flexibly present a large amount of information in limited space. They also can easily accommodate typical health inequality information to describe a health variable (eg, life expectancy) by an inequality domain (eg, income) with domain groups (eg, poor and rich) in a population (eg, Canada) over time periods (eg, 2010 and 2017). The numeracy literature suggests that a health inequality graph's caption should provide a numerical, explicitly calculated description of health inequality expressed in absolute and relative terms, from carefully thought-out perspectives. CONCLUSIONS: Given the ubiquity of graphs, the health inequality field should learn from the vibrant multidisciplinary literature how to construct effective graphic communications, especially by considering to use dot charts.

Discordance in Utility Measurement in Persons with Neurological Conditions: A Comparison of the SF-6D and the HUI3.

OBJECTIVES: To examine the extent of disagreement in estimated utility between the six-dimensional health state short form (SF-6D) and the Health Utilities Index-Mark 3 (HUI3) in Canadians with neurological conditions and how discordance varied by participant and neurological condition attributes. METHODS: The study analyzed cross-sectional survey data from the Living with and Managing the Impact of a Neurological Condition Study. Self-reported data were collected on the burden and impact of neurological conditions on participants' everyday lives. Disagreement was examined by comparing utility distributions, paired t tests of the means, Spearman ρ correlations, intraclass correlations, and Bland-Altman plots. Associations between participant and neurological condition attributes and utility differences were assessed using multiple regression models. RESULTS: Disagreement between the SF-6D and the HUI3 was substantial, with a mean utility difference of 0.15 (95% confidence interval 0.13-0.17). An intraclass correlation coefficient of 0.41 suggests only marginal agreement. The Bland-Altman plot and regression analysis showed systematic variation in utility difference associated with level of utility. Depending on the level of utility, utility differences between the SF-6D and the HUI3 shift in magnitude and direction. The pattern of disagreement did not vary substantially by participant or neurological condition characteristics. CONCLUSIONS: The SF-6D and the HUI3 provide inconsistent evaluations of utility in persons with neurological conditions. The magnitude and direction of differences in estimated utility are strongly associated with level of utility. Depending on the health status of the sample, the SF-6D and the HUI3 could provide widely contradictory utility estimates. A concern is that utility scores, and hence potential evaluations and health care decisions, may vary simply according to the choice of instrument.

Validation of the Patient Activation Measure (PAM-13) among adults with cardiac conditions in Singapore.

PURPOSE: The Patient Activation Measure (PAM-13) measures patients' knowledge, skill, and confidence in chronic condition self-management. The purpose of this study was to assess the validity of PAM-13 (English version) among English-speaking adults with cardiac conditions in Singapore. METHODS: A cross-sectional study was conducted in a convenient sample of 270 heart clinic patients. Using the unitary concept of validity, evidence of (1) internal structure via data quality, unidimensionality, differential item functioning, and internal consistency, (2) response process through item difficulty and item fit using Rasch modeling, and (3) relationship to other variables via correlations with depression and self-efficacy were examined. RESULTS: The item response was high with only one missing answer. All items had a small floor effect, but nine out of 13 items had a ceiling effect larger than 15 %. Cronbach's α was 0.86, and average inter-item correlations was 0.324. Results suggested unidimensionality; however, differences in item difficulty ranking were found. A low, negative correlation was found with depression, while a moderate, positive correlation was found with self-efficacy. CONCLUSION: Evidence in all three areas of validity were mixed. Caution should be exercised when using categorical activation "level" to inform clinical decisions.

Volunteer navigation partnerships: Piloting a compassionate community approach to early palliative care.

BACKGROUND: A compassionate community approach to palliative care provides important rationale for building community-based hospice volunteer capacity. In this project, we piloted one such capacity-building model in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in community. The goal was to improve quality of life by developing independence, engagement, and community connections. METHODS: Volunteers received navigation training through a three-day workshop and then conducted in-home visits with clients living with advanced chronic illness over one year. A nurse navigator provided education and mentorship. Mixed method evaluation data was collected from clients, volunteer navigators, the nurse navigator, and other stakeholders. RESULTS: Seven volunteers were partnered with 18 clients. Over the one-year pilot, the volunteer navigators conducted visits in home or by phone every two to three weeks. Volunteers were skilled and resourceful in building connections and facilitating engagement. Although it took time to learn the navigator role, volunteers felt well-prepared and found the role satisfying and meaningful. Clients and family rated the service as highly important to their care because of how the volunteer helped to make the difficult experiences of aging and advanced chronic illness more livable. Significant benefits cited by clients were making good decisions for both now and in the future; having a surrogate social safety net; supporting engagement with life; and ultimately, transforming the experience of living with illness. Overall the program was perceived to be well-designed by stakeholders and meeting an important need in the community. Sustainability, however, was a concern expressed by both clients and volunteers. CONCLUSIONS: Volunteers providing supportive navigation services during the early phase of palliative care is a feasible way to foster a compassionate community approach to care for an aging population. The program is now being implemented by hospice societies in diverse communities across Canada.

Power and resistance within the hospital's hierarchical system: the experiences of chronically ill patients.

AIMS AND OBJECTIVES: To explore experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings. Specifically, we explored how social and institutional discourses shape power relations during the negotiation process. BACKGROUND: The hospital system is embedded in a hierarchical structure where the voice of the healthcare provider as expert is often given more importance than the patient. This system has been criticised as being oppressive to patients who are perceived to be lower in the hierarchy. In this study, we illustrate how the hospital's hierarchical system is not always oppressing but can also create moments of empowerment for patients. DESIGN: A feminist poststructuralist approach informed by the teaching of Foucault was used to explore power relations between nurses and patients when negotiating patient care in hospital settings. METHODS: Eight individuals who suffered from chronic illness shared their stories about how they negotiated their care with nurses in hospital settings. The interviews were tape-recorded. Discourse analysis was used to analyse the data. RESULTS AND CONCLUSIONS: Patients recounted various experiences when their voices were not heard because the current hospital system privileged the healthcare provider experts' advice over the patients' voice. The hierarchical structure of hospital supported these dynamics by privileging nurses as gatekeepers of service, by excluding the patients' input in the nursing notes and through a process of self-regulation. However, patients in this study were not passive recipients of care and used their agency creatively to resist these discourses. RELEVANCE TO CLINICAL PRACTICE: Nurses need to be mindful of how the hospital's hierarchical system tends to place nurses in a position of power, and how their authoritative position may positively or adversely affect the negotiation of patient care.

The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

AIMS AND OBJECTIVES: The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. BACKGROUND: Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. DESIGN: The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. METHODS: In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. RESULTS: Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. CONCLUSIONS: This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. RELEVANCE TO CLINICAL PRACTICE: Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients.

The Patient Activation Measure: a validation study in a neurological population.

PURPOSE: To assess the validity of the Patient Activation Measure (PAM13) of patient activation in persons with neurological conditions. METHODS: "The Everyday Experience of Living with and Managing a Neurological Condition" (The LINC study) surveyed 948 adults with neurological conditions residing in Canada in 2011 and 2012. Using data for 722 respondents who met coding requirements for the PAM-13, we examined the properties of the measure using principle components analysis, inter-item correlations and Cronbach's alpha to assess unidimensionality and internal consistency. Rasch modeling was used to assess item performance and scaling. Construct validity was assessed by calculating associations between the PAM and known correlates. RESULTS: PAM-13 provides a suitably reliable and valid instrument for research in patients with neurological conditions, but scaling problems may yield measurement error and biases for those with low levels of activation. This is of particular importance when used in clinical settings or for individual client care. Our study also suggests that measurement of activation may benefit from tailoring items and scaling to specific diagnostic groups such as people with neurological conditions, thus allowing the PAM-13 to recognize unique attributes and management challenges in those conditions. CONCLUSIONS: The PAM-13 is an internally reliable and valid tool for research purposes. The use of categorical activation "level" in clinical settings should be done with caution.