Managing everyday life: Self-management strategies people use to live well with neurological conditions.

OBJECTIVE: This paper uses the Taxonomy of Everyday Self-management Strategies (TEDSS) to provide insight and understanding into the complex and interdependent self-management strategies people with neurological conditions use to manage everyday life. METHODS: As part of a national Canadian study, structured telephone interviews were conducted monthly for eleven months, with 117 people living with one or more neurological conditions. Answers to five open-ended questions were analyzed using qualitative content analysis. A total of 7236 statements were analyzed. RESULTS: Findings are presented in two overarching patterns: 1) self-management pervades all aspects of life, and 2) self-management is a chain of decisions and behaviours. Participants emphasized management of daily activities and social relationships as important to maintaining meaning in their lives. CONCLUSION: Managing everyday life with a neurological condition includes a wide range of diverse strategies that often interact and complement each other. Some people need to intentionally manage every aspect of everyday life. PRACTICE IMPLICATIONS: For people living with neurological conditions, there is a need for health providers and systems to go beyond standard advice for self-management. Self-management support is best tailored to each individual, their life context and the realities of their illness trajectory.

The financial burden of prescription drugs for neurological conditions in Canada: Results from the National Population Health Study of Neurological Conditions.

This paper describes the current situation in Canada concerning the availability and use of prescription drugs for neurological conditions. We conducted semi-structured qualitative interviews with health care providers, administrators, community organization representatives, opinion leaders and policy makers. The analysis revealed three primary themes related to the availability of and access to prescription drugs to treat neurological conditions. First, we learned that across Canada there is significant vulnerability and a need for advocacy on behalf of people living with these conditions. Second, we learned that the heightened level of vulnerability and need for advocacy stems in part from the significant differences in the drug coverage available in the different provinces and territories. As a result, there are significant inequities across Canada. Third, we determined that the existing situation is also due to the current approach to health governance (i.e., accountability, transparency). Our study provides evidence for the urgent need for a formal discourse on national pharmacare in Canada, with representatives of neurological conditions having a voice at the table.

Health and Community-Based Services for Individuals with Neurological Conditions.

BACKGROUND: The current study involves a national survey of healthcare providers who offer services for individuals with a variety of neurological conditions. It aims to describe the provision of health and community-based services as well as the admission criteria, waitlist practices, and referral sources of these services. METHODS: An online survey was directed at administrators/managers from publicly funded hospital programs, long-term care homes, and community-based healthcare provider agencies that were believed to be providing information and/or services to patients with a variety of neurological conditions. RESULTS: Approximately 60% (n=254) of respondents reported providing services in either urban/suburban areas or rural/remote areas only, whereas the remaining 40% (n=172) provided services regardless of patient location. A small proportion of respondents reported providing services for individuals with dystonia (28%), Tourette syndrome (17%), and Rett syndrome (13%). There was also a paucity of diverse healthcare professionals across all institutions, but particularly mental healthcare professionals in hospitals. Lastly, the majority of respondents reported numerous exclusion criteria with regard to service provision, including prevalent comorbid conditions. CONCLUSIONS: If the few services provided for these neurological patient populations exclude common comorbidities, it is likely that there will be no other place for these individuals to seek care.

A systematic review of the effectiveness of stroke self-management programs for improving function and participation outcomes: self-management programs for stroke survivors.

PURPOSE: A systematic review of stroke self-management programs was conducted to: (i) identify how many and what self-management support strategies were included in stroke self-management interventions and (ii) describe whether self-management programs effectively improved outcomes, focusing specifically on function and participation outcomes. METHODS: Twelve databases were searched for the years 1986-2012 to identify self-management programs for stroke survivors. Pre-post, quasi-experimental and randomized controlled trial study designs were included. Descriptive information about the intervention was scrutinized to identify what self-management support strategies were present in the intervention and comparisons were made between programs using a group versus a one-to-one format. All outcomes were included and categorized. RESULTS: The most prominent strategies identified in our review were goal setting and follow-up, and an individualized approach using structured information and professional support. There are indications that self-management programs can significantly increase participation and functional ability. However, the high level of clinical heterogeneity in program delivery, outcomes and level of stroke severity made it impossible to conduct a meta-analysis. Further examination of individual self-management support strategies, such as linking rehabilitation goal setting to post-acute self-management programs, the inclusion of family members and the contribution of peer-support is warranted. IMPLICATIONS FOR REHABILITATION: Self-management programs for stroke survivors. Linking post-acute self-management programs to rehabilitation goal setting could improve outcomes. Involving family members in self-management programs may benefit stroke survivors.

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.

Development of a Chronic Care Model for Neurological Conditions (CCM-NC).

BACKGROUND: Persons with neurological conditions and their families face a number of challenges with the provision of health and community-based services. The purpose of this study was to understand the existing health and community service needs and gaps in care and to use this information to develop a model to specify factors and processes that may improve the quality of care and health and well-being for persons with neurological conditions. METHODS: We conducted semi-structured interviews with health care professionals, community-based non-health care professionals working with individuals with neurological conditions, and policy makers -from the Ministries of Health, Community and Social Services, Transportation and Education- across Canada. We used a purposive sampling and snowballing approach to obtain maximum variation across professions, sector and geography (provinces and territories, rural and urban). Data analysis was an iterative, constant comparative process involving descriptive and interpretive analyses and was initially guided by the components of the Expanded Chronic Care Model. RESULTS: A total of 180 individuals completed the interviews: 39% (n = 70) health care professionals, 47% (n = 85) community-based non-health care professionals, and 14% (n = 25) policy makers. Based on the data we developed the Chronic Care Model for Neurological Conditions (CCM-NC). The major needs/gaps are represented by the following themes: acceptance and openness to neurological conditions, evidence informed policy, investments and funding, supported transitions, caregiver support, and life enhancing resources (education, employment, housing and transportation), knowledge and awareness of neurological conditions and availability and access to health services. The model maintains that intersectoral collaboration across the health system, community and policy components is needed. It recognizes that attitudes, policies, enhanced community integration and health system changes are needed to develop activated patients and families, proactive service delivery teams, a person-centred health system and healthy public policy for persons with neurological conditions. CONCLUSION: The CCM-NC will generate debate and discussion about the actions needed in each of the model components to enable people with neurological conditions to sustain healthier lives. Next steps include validating the model with persons with neurological conditions, in and outside of the Canadian context and developing and evaluating interventions to test the model.

Identifying gaps in knowledge: A map of the qualitative literature concerning life with a neurological condition.

OBJECTIVES: To describe patterns in the qualitative literature regarding the everyday experience of living with a neurological condition; to identify areas of depth as well as gaps in the existing knowledge base. METHODS: An extensive search of the literature yielded 474 articles meeting the inclusion criteria. Data extraction, based on scrutiny of both abstract and full text article included country of origin, diagnosis, stated aim, methodological framework/design, participants, and data collection method(s). Studies were categorized into 27 topics within four broad foci. RESULTS: Four broad foci describe the field: impact and management, daily activities and occupations, impact on family, and the healthcare experience. Overall the research is unevenly distributed by diagnosis; some are well represented while others are the subject of little research. Even diagnoses well represented in quantity can be limited in breadth. DISCUSSION: Possible explanations for the patterns of emphasis include: a focus on issues and problems, highlighted points of contact between patients and healthcare providers, and ability of participants to voice their views. The literature is also characterized by limited across diagnoses research or that comparing the experience of people with different diagnoses. There is a need for more research in particular diagnoses; more varied data collection methods and acknowledgement of ethnicity, gender, discrimination, and social inequalities.

"How can I still be me?": Strategies to maintain a sense of self in the context of a neurological condition.

The Living with a Neurological Condition (LINC) study was part of the National Population Health Study of Neurological Conditions conducted in Canada. This article describes empirical original qualitative data collected in the third and final phase of this study and examines how individuals living with a neurological condition maintain continuity of their sense of self, with a particular focus on their strategies. Fifteen interviews were analysed for this paper. Emerging strategies for maintaining sense of self include: (1) avoidance and denial, (2) cognitive reframing, (3) articulation of the self through imagined positive identity, (4) strategies that reconnect to identity in the past, (5) adjusting and altering goals, (6) spiritual activities, (7) humour, (8) comparison with others: identity as shaped through social constructs, and (9) creating communities: a reciprocal reflection of self.

The everyday experience of living with and managing a neurological condition (the LINC study): study design.

BACKGROUND: The impact of neurological conditions on individuals, families and society is increasing and having a significant economic impact in Canada. While some economic data is known, the human costs of living with a neurological condition are poorly understood and rarely factored into future burden analyses. The "Living with the Impact of a Neurological Condition (LINC)" study aims to fill this gap. It seeks to understand, for children and adults with neurological conditions, the supports and resources that make everyday life possible and meaningful. METHODS/DESIGN: The LINC study is a nested study using mixed methods. We are interested in the following outcomes specifically: health status; resource utilization; self-management strategies; and participation. Three studies captured data from multiple sources, in multiple ways and from multiple perspectives. Study One: a population-based survey of adults (n=1500), aged 17 and over and parents (n=200) of children aged 5 to 16 with a neurological condition. Study Two: a prospective cohort study of 140 adults and parents carried out using monthly telephone calls for 10 months; and Study Three: a multiple perspective case study (MPCS) of 12 adults and 6 parents of children with a neurological condition. For those individuals who participate in the MPCS, we will have data from all three studies giving us rich, in depth insights into their daily lives and how they cope with barriers to living in meaningful ways. DISCUSSION: The LINC study will collect, for the first time in Canada, data that reflects the impact of living with a neurological condition from the perspectives of the individuals themselves. A variety of tools will be used in a combination, which is unique and innovative. This study will highlight the commonalities of burden that Canadians living with neurological conditions experience as well as their strategies for managing everyday life.

"They want to come to school": Work-based education programs to prevent the social exclusion of vulnerable youth.

OBJECTIVE: This paper describes and compares exemplary work-based education (WBE) programs in Ontario Canada designed to meet the needs of two groups of vulnerable youth - at-risk youth and youth with severe disabilities. PARTICIPANTS: Two focus group interviews were held, one with professionals from exemplary programs designed to meet the needs of at-risk youth and one with professionals from exemplary programs for youth with severe disabilities. METHOD: Standard qualitative analyses were conducted on each focus group transcript to generate themes which were subsequently grouped into larger patterns. Then cross-case analyses identified consistencies and unique features within the two types of WBE programs. RESULTS: Two major patterns that characterize the WBE programs emerged from the analyses: the first pattern described the programmatic approaches to WBE appropriate for each type of type of student (which included themes such as the need for an alternative learning environment for at-risk youth), and the second pattern highlighted the rationale for each kind of program (which included themes like ensuring equity for youth with severe disabilities). CONCLUSIONS: The findings suggest that schools should continue to provide distinct WBE programs for each of these groups of vulnerable youth - at-risk youth and youth with severe disabilities.

Learning in the workplace: Fostering resilience in disengaged youth.

OBJECTIVE: International reports on school-to-work transition make it clear that worldwide youth are at-risk for educational disengagement and are three times as likely to be unemployed as their adult counterparts. Work-based education (WBE) is one of the most frequently recommended solutions for youth disengagement which suggests that WBE serves as a protective factor and encourages resilience in at-risk youth. The objective of this study was to describe and compare the experiences of two at-risk youth enrolled in WBE. PARTICIPANTS: Two 18-year old at-risk youth enrolled in WBE were chosen for study because they were learning in workplaces judged likely to promote resilience. Both had been disengaged from school prior to enrolling in WBE. METHOD: Each multiple-perspective case study includes the perspective of the youth, the workplace employer, and the work-based educator. Data consisted of ethnographic observations and interviews conducted at the workplace, and with the teacher in the school. RESULTS: Each case study highlights how supportive adults and an at-risk youth engage in interactions that facilitate the emergence of resilience in the workplace. CONCLUSIONS: In these two cases, risk and resilience are context specific, suggesting that at-risk youth may require tailored workplace programs to meet their career development needs.

Negotiating accommodations so that work-based education facilitates career development for youth with disabilities.

Workers with disabilities are entitled to have their individual needs accommodated in a way that allows them to perform the essential duties of their job. However, adults with disabilities are often lacking in career development and are ill-prepared to negotiate workplace accommodations. This has led educators to seek workplaces that can accommodate the needs of adolescents with disabilities, so these adolescents can learn to negotiate accommodations and enhance their career development through work-based education. This paper reports on two case studies in which employers had agreed to accommodate the needs of adolescents with disabilities participating in work-based education. Social Cognitive Career Theory (SCCT) framed the analyses of these two cases - a case of a student with physical disabilities and a case of a student with developmental disabilities. SCCT proves valuable in understanding the role of work-based education in the career development of disabled youth.

Spirituality unplugged: a review of commonalities and contentions, and a resolution.

Spirituality is an important and essential component of occupational therapy, but recent publications in occupational therapy literature also raise questions about the adequacy of the Canadian Association of Occupational Therapists' definition of spirituality and the relationship of spirituality to occupational performance. Re-examination of spirituality and occupation is needed to better understand the role of occupational therapists with respect to spirituality. In this paper, the authors examine the common themes that are inherent in definitions of spirituality from diverse professional perspectives. The commonalities and contentions inherent in these definitions are then contrasted with the perspectives of occupational therapists. This discussion is followed by a challenge for re-examination of spirituality in the Canadian Model of Occupational Performance, and an argument that occupational identity rather than spirituality should have a central position. The implications of spirituality and occupational identity for evidence-based occupational therapy are considered.