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- Alizadeh, Neda, et al.
(author)
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What we know about fatigue self-management programs for people living with chronic conditions : a scoping review
- 2023
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In: Patient Education and Counseling. - : Elsevier. - 0738-3991 .- 1873-5134. ; 114
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Research review (peer-reviewed)abstract
- Objective: The significant impact of fatigue on the lives of patients with chronic conditions has demanded a response. One response has been the development and testing of self-management programs. Little is known about what these programs have in common or how they differ. This scoping review compared the key components of fatigue self-management programs.Methods: Scoping review methodology was employed. Databases of CINAHL, Academic Search Premier, PsycINFO, Cochrane and Medline were searched to identify relevant sources. Results: Included fatigue programs were compared using a three-component framework: 1) self-management strategies; 2) active patient participation; and 3) self-management support. Although all programs included some aspects of these components, the extent varied with only a few domains of these components found across all programs.Conclusion: The three self-management components employed in this study showed potential benefits in identifying similarities and differences across fatigue programs with comparable and distinct underlying theories. This three-component framework could facilitate identification of domains associated with positive outcomes. Practice implications: It is essential that authors of programs provide detailed descriptions to enable inter-program comparison. The three-component framework chosen for this review was capable of describing and comparing fatigue self-management programs, paving the way for more effective interventions.
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2. |
- Audulv, Åsa, et al.
(author)
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Coping, adapting or self-managing - what is the difference? A concept review based on the neurological literature
- 2016
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In: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 72:11, s. 2629-2643
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Journal article (peer-reviewed)abstract
- AIM: The aim of this study was to report: (1) an analysis of the concepts of coping, adaptation and self-management in the context of managing a neurological condition; and (2) the overlap between the concepts.BACKGROUND: The three concepts are often confused or used interchangeably. Understanding similarities and differences between concepts will avoid misunderstandings in care. The varied and often unpredictable symptoms and degenerative nature of neurological conditions make this an ideal population in which to examine the concepts.DESIGN: Concept analysis.DATA SOURCES: Articles were extracted from a large literature review about living with a neurological condition. The original searches were conducted using SCOPUS, EMBASE, CINAHL and Psych INFO. Seventy-seven articles met the inclusion criteria of: (1) original article concerning coping, adaptation or self-management of a neurological condition; (2) written in English; and (3) published between 1999-2011.METHODS: The concepts were examined according to Morse's concept analysis method; structural elements were then compared.RESULTS: Coping and adaptation to a neurological condition showed statistically significant overlap with a common focus on internal management. In contrast, self-management appears to focus on disease-controlling and health-related management strategies. Coping appears to be the most mature concept, whereas self-management is least coherent in definition and application.CONCLUSION: All three concepts are relevant for people with neurological conditions. Healthcare teams need to be cautious when using these terms to avoid miscommunication and to ensure clients have access to all needed interventions. Viewing the three concepts as a complex whole may be more aligned with client experience.
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4. |
- Audulv, Åsa, 1980-, et al.
(author)
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Identifying gaps in knowledge: A map of the qualitative literature concerning life with a neurological condition
- 2014
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In: Chronic Illness. - : Sage Publications. - 1742-3953 .- 1745-9206. ; 10:3, s. 192-243
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Research review (peer-reviewed)abstract
- 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.
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5. |
- Audulv, Åsa, et al.
(author)
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The Taxonomy of Everyday Self-management Strategies (TEDSS) : A framework derived from the literature and refined using empirical data
- 2019
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In: Patient Education and Counseling. - : Elsevier. - 0738-3991 .- 1873-5134. ; 102:2, s. 367-375
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Journal article (peer-reviewed)abstract
- OBJECTIVE: To extend our understanding of self-management by using original data and a recent concept analysis to propose a unifying framework for self-management strategies.METHODS: Longitudinal interview data with 117 people with neurological conditions were used to test a preliminary framework derived from the literature. Statements from the interviews were sorted according to the predefined categories of the preliminary framework to investigate the fit between the framework and the qualitative data. Data on frequencies of strategies complemented the qualitative analysis.RESULTS: The Taxonomy of Every Day Self-management Strategies (TEDSS) Framework includes five Goal-oriented Domains (Internal, Social Interaction, Activities, Health Behaviour and Disease Controlling), and two additional Support-oriented Domains (Process and Resource). The Support-oriented Domain strategies (such as information seeking and health navigation) are not, in and of themselves, goal focused. Instead, they underlie and support the Goal-oriented Domain strategies. Together, the seven domains create a comprehensive and unified framework for understanding how people with neurological conditions self-manage all aspects of everyday life.CONCLUSIONS: The resulting TEDSS Framework provides a taxonomy that has potential to resolve conceptual confusion within the field of self-management science.PRACTICE IMPLICATIONS: The TEDSS Framework may help to guide health service delivery and research.
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6. |
- Guilcher, Sara J.T., et al.
(author)
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Medication self-management toolkits for adults with multiple sclerosis : A scoping review
- 2023
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In: Exploratory Research in Clinical and Social Pharmacy. - : Elsevier. - 2667-2766. ; 10
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Research review (peer-reviewed)abstract
- Background: Multiple sclerosis (MS) is an autoimmune disease that is often treated with multiple medications. Managing multiple medications, also known as polypharmacy, can be challenging for persons with MS. Toolkits are instructional resources designed to promote behaviour change. Toolkits may support medication self-management for adults with MS, as they have been useful in other populations with chronic conditions.Objective: The main purpose of this review was to identify and summarize medication self-management toolkits for MS, as related to the design, delivery, components, and measures used to evaluate implementation and/or outcomes.Methods: A scoping review was conducted following guidelines by JBI. Articles were included if they focused on adults (18 years or older) with MS.Results: Six articles reporting on four unique toolkits were included. Most toolkits were technology-based, including mobile or online applications, with only one toolkit being paper-based. The toolkits varied in type, frequency, and duration of medication management support. Varying outcomes were also identified, but there were improvements reported in symptom management, medication adherence, decision-making, and quality of life. The six studies were quantitative in design, with no studies exploring the user experience from a qualitative or mixed-methods design.Conclusions: There is limited research on medication self-management toolkits among adults with MS. Future development, implementation, and evaluation mixed-methods research are needed to explore user experiences and overall design of toolkits.
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7. |
- Keddy, America Cristina, et al.
(author)
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The Team Assessment of Self-Management Support (TASMS) : A new approach to uncovering how teams support people with chronic conditions. Healthcare Management Forum
- 2021
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In: Healthcare Management Forum. - : Sage Publications. - 0840-4704 .- 2352-3883. ; 34:1, s. 43-48
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Journal article (peer-reviewed)abstract
- Canadian and other healthcare systems are adopting primary care models founded on multidisciplinary, team-based care. This paper describes the development and use of a new tool, the Team Assessment of Self-Management Support (TASMS), designed to understand and improve the self-management support teams provide to patients with chronic conditions. Team Assessment of Self-Management Support captures the time providers spend supporting seven different types of self-management support (process strategies, resources strategies, disease controlling strategies, activities strategies, internal strategies, social interactions strategies, and healthy behaviours strategies), their referral patterns and perceived gaps in care. Four unique features make TASMS user-friendly: it is patient-centred, it uses provider-level data to create a team profile, it has the ability to be tailored to needs (diagnosis and visit type), and visual presentation of results are quickly and intuitively understood by both providers and planners. Currently being used by providers and planners in Nova Scotia, scaling up will allow more widespread use
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8. |
- Kephart, George, et al.
(author)
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Item selection, scaling and construct validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) measurement tool in adults
- 2022
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In: Quality of Life Research. - : Springer Nature. - 0962-9343 .- 1573-2649. ; 31:9, s. 2867-2880
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Journal article (peer-reviewed)abstract
- 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.
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9. |
- Kephart, George, et al.
(author)
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The structural and convergent validity of three commonly used measures of self-management in persons with neurological conditions
- 2019
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In: Quality of Life Research. - : Springer. - 0962-9343 .- 1573-2649. ; 28:2, s. 545-556
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Journal article (peer-reviewed)abstract
- 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.
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