Åsa Audulv

The Integration of Chronic Illness Self-Management

Self-management is crucial for people living with chronic diseases, but the actual process of integrating self-management has not been explored in depth. In this article, we investigate the integration of self-management into the lives of people with chronic illness. In this longitudinal study, we used an interpretive description approach. Twenty-one individuals were interviewed regularly during the first 3 years after they were diagnosed with a chronic condition. We found self-management integration to be an ongoing process that included four phases: seeking effective self-management strategies, considering costs and benefits, creating routines and plans of action, and negotiating self-management that fits one’s life. The participants managed the phases according to their context, e.g., illness experience, life situation, personal beliefs, and social support. Health care providers should therefore facilitate self-management integration by providing support that is adjusted to the person’s phase of self-management integration and life context.

The over time development of chronic illness self-management patterns: a longitudinal qualitative study

BackgroundThere currently exists a vast amount of literature concerning chronic illness self-management, however the developmental patterns and sustainability of self-management over time remain largely unknown. This paper aims to describe the patterns by which different chronic illness self-management behaviors develop and are maintained over time.MethodTwenty-one individuals newly diagnosed with chronic illnesses (e.g., diabetes, rheumatism, ischemic heart disease, multiple sclerosis, chronic renal disease, inflammatory bowel disease) were repeatedly interviewed over two-and-a-half years. The interviews were conducted in Sweden from 2006 to 2008. A total of 81 narrative interviews were analyzed with an interpretive description approach.ResultsThe participants’ self-management behaviors could be described in four different developmental patterns: consistent, episodic, on demand, and transitional. The developmental patterns were related to specific self-management behaviors. Most participants took long-term medications in a consistent pattern, whereas exercise was often performed according to an episodic pattern. Participants managed health crises (e.g., angina, pain episodes) according to an on demand pattern and everyday changes due to illness (e.g., adaptation of work and household activities) according to a transitional pattern. All of the participants used more than one self-management pattern.ConclusionThe findings show that self-management does not develop as one uniform pattern. Instead different self-management behaviors are enacted in different patterns. Therefore, it is likely that self-management activities require support strategies tailored to each behavior’s developmental pattern.

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

Abstract 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.

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.

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

PurposeTo 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.ResultsPAM-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.ConclusionsThe 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.

Coping, adapting or self-managing – what is the difference? A concept review based on the neurological literature

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 Morses 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.

To integrate and manage diabetes in school: Youth’s experiences of living with Type 1 diabetes in relation to school – a qualitative study

In Sweden, each year approximately 700 children develop Type 1 diabetes. Living with the illness is a challenge for youth and requires adjustments to lifestyle, and to manage school. The aim was to describe youths’ experiences of living with Type 1 diabetes in relation to school. A qualitative research design was used and interviews were performed with eight girls and five boys with Type 1 diabetes. The interviews were subjected to qualitative content analysis. Three themes were identified: to be friends with the diabetes, striving for normality and receiving support from others. Results showed a need to increase the understanding of T1D and diabetic competence within the Swedish school system and knowledge of youths’ own experiences is vital in this work. Living with T1D was a struggle for normality, independency and the youth needed to be friends with diabetes to handle everyday self-management. Although there are demanding life and school circumstances, it eventually becomes possible for the youth to handle the illness and to integrate and manage diabetes in school.

What we know about the purpose, theoretical foundation, scope and dimensionality of existing self-management measurement tools: A scoping review

OBJECTIVES To identify self-report, self-management measures for adults with chronic conditions, and describe their purpose, theoretical foundation, dimensionality (multi versus uni), and scope (generic versus condition specific). METHODS A search of four databases (8479 articles) resulted in a scoping review of 28 self-management measures. RESULTS Although authors identified tools as measures of self-management, wide variation in constructs measured, purpose, and theoretical foundations existed. Subscales on 13 multidimensional tools collectively measure domains of self-management relevant to clients, however no one tools subscales cover all domains. CONCLUSIONS Viewing self-management as a complex, multidimensional whole, demonstrated that existing measures assess different, related aspects of self-management. Activities and social roles, though important to patients, are rarely measured. Measures with capacity to quantify and distinguish aspects of self-management may promote tailored patient care. PRACTICE IMPLICATIONS In selecting tools for research or assessment, the reason for development, definitions, and theories underpinning the measure should be scrutinized. Our ability to measure self-management must be rigorously mapped to provide comprehensive and system-wide care for clients with chronic conditions. Viewing self-management as a complex whole will help practitioners to understand the patient perspective and their contribution in supporting each individual patient.

The Taxonomy of Everyday Self-management Strategies (TEDSS): A framework derived from the literature and refined using empirical data

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.

Educational nurse-led lifestyle intervention for persons with mental illness

Although persons with severe mental illness face an increased risk of mortality and of developing negative health outcomes, research has shown that lifestyle interventions can sufficiently support their health. In response, this study examined a nurse-led lifestyle intervention developed in cooperation with members of municipal and county councils to gauge its impact on the quality of life, cognitive performance, walking capacity, and body composition of persons with severe mental illness. Lasting 26 weeks and involving 38 persons with severe mental illness, the intervention prioritised two components: the interpersonal relationships of persons with severe mental illness, staff, and group leaders and group education about physical and mental health. Pre-post intervention measurements of quality of life collected with the Manchester Short Assessment of Quality of Life, cognitive performance with the Frontal Systems Behaviour Scale, walking capacity with a 6-min walk test, and body composition in terms of waist circumference and body mass index were analysed using a nonparametric test Wilcoxon signed-rank test. Results suggest that the intervention afforded significant improvements in the health-related variables of quality of life, cognitive performance, walking capacity, and waist circumference for persons with severe mental illness. However, long-term studies with control groups and that examine parameters related to cardiovascular risk factors are essential to ensure the sustained impact of the intervention.