Initiating and Maintaining a Lifestyle Program Directed at Persons Living with Severe Mental Illness in a Municipality Care Setting.

Lifestyle programs are effective in improving the health of persons living with severe mental illness. However, the implementation of these programs and making them a sustainable part of daily care remain challenging. This qualitative descriptive study aimed to describe how staff worked with and experienced a lifestyle program in a municipality mental health care setting over time. The program intended to support persons living with severe mental illness to overcome health challenges. Data was collected at three time points spanning 7 years. The staff motivated the participants with SMI with severe mental illness to take part in the program, prepared them, and gave them individualized lifestyle support. A key factor of the program's implementation was the staff's interest and engagement in lifestyle questions. According to the staff it was apparent that small efforts such as running the present program could give synergic health effects such as improved mental- and social health. This study shows that it is feasible to conduct this lifestyle program in ordinary care without considerable resources. However, support from management is crucial, as well as the development of guidelines and routines of the work with lifestyle questions.

Time and change: a typology for presenting research findings in qualitative longitudinal research.

BACKGROUND: Qualitative longitudinal research (QLR) is an emerging methodology used in health research. The method literature states that the change in a phenomenon through time should be the focus of any QLR study, but in empirical studies, the analysis of changes through time is often poorly described, and the emphasis on time/change in the findings varies greatly. This inconsistency might depend on limitations in the existing method literature in terms of describing how QLR studies can present findings. The aim of this study was to develop and describe a typology of alternative approaches for integrating time and/or change in QLR findings. METHODS: In this method study, we used an adapted scoping review design. Articles were identified using EBSCOhost. In total, methods and results sections from 299 QLR articles in the field of health research were analyzed with inspiration from content analysis. RESULTS: We constructed a typology of three types and seven subtypes. The types were based on the underlying structural principles of how time/change was presented: Type A) Findings have a low utilization of longitudinal data, Type B) Findings are structured according to chronological time, and Type C) Findings focus on changes through time. These types differed in 1) the way the main focus was on time, change or neither; 2) the level of interpretation in the findings; and 3) how theoretical understandings of time/change were articulated in the articles. Each type encompassed two or three subtypes that represented distinct approaches to the aim and results presentation of QLR findings. CONCLUSIONS: This method study is the first to describe a coherent and comprehensive typology of alternative approaches for integrating time/change into QLR findings in health research. By providing examples of various subtypes that can be used for results presentations, it can help researchers make informed decisions suitable to their research intent.

Qualitative longitudinal research in health research: a method study.

BACKGROUND: Qualitative longitudinal research (QLR) comprises qualitative studies, with repeated data collection, that focus on the temporality (e.g., time and change) of a phenomenon. The use of QLR is increasing in health research since many topics within health involve change (e.g., progressive illness, rehabilitation). A method study can provide an insightful understanding of the use, trends and variations within this approach. The aim of this study was to map how QLR articles within the existing health research literature are designed to capture aspects of time and/or change. METHODS: This method study used an adapted scoping review design. Articles were eligible if they were written in English, published between 2017 and 2019, and reported results from qualitative data collected at different time points/time waves with the same sample or in the same setting. Articles were identified using EBSCOhost. Two independent reviewers performed the screening, selection and charting. RESULTS: A total of 299 articles were included. There was great variation among the articles in the use of methodological traditions, type of data, length of data collection, and components of longitudinal data collection. However, the majority of articles represented large studies and were based on individual interview data. Approximately half of the articles self-identified as QLR studies or as following a QLR design, although slightly less than 20% of them included QLR method literature in their method sections. CONCLUSIONS: QLR is often used in large complex studies. Some articles were thoroughly designed to capture time/change throughout the methodology, aim and data collection, while other articles included few elements of QLR. Longitudinal data collection includes several components, such as what entities are followed across time, the tempo of data collection, and to what extent the data collection is preplanned or adapted across time. Therefore, there are several practices and possibilities researchers should consider before starting a QLR project.

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.

The Team Assessment of Self-Management Support (TASMS): A new approach to uncovering how teams support people with chronic conditions.

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.

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.

Analyzing variations in changes over time: development of the Pattern-Oriented Longitudinal Analysis approach.

Longitudinal qualitative research in nursing is rare but becoming more common. Data collection and analysis over time provide some intriguing possibilities to better understand processes, development, and change in illness experience, healthcare organizations, and self-management. This paper aims to present a process for analyzing qualitative longitudinal data material, namely the Pattern-Oriented Longitudinal Analysis approach (POLA). We developed this approach after synthesizing experiences from two longitudinal qualitative projects and comparing our procedures and reflections with the relevant literature. Using the POLA approach, researchers can describe complexity and variation in changes over time. During the analysis process, emphasis is put on visualizing and identifying change at both an individual and a group level. Ontological and epistemological assumptions for the approach are also described. The benefit of this approach is the possibility to describe complexity and diversity in processes over time, which is important for the development of nursing knowledge. The analysis approach can be further used and developed by researchers seeking to understand variance or contextual features in processes and changes over time.

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 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.

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.

Reducing or increasing violence in forensic care: a qualitative study of inpatient experiences.

Semi-structured interviews with 13 forensic psychiatric inpatients that had decreased their assessed risk of violence were analyzed using interpretive description. The main contribution from this study is a detailed description of patients' own strategies to avoid violence. Participants described having an ongoing inner dialog in which they encouraged themselves, thereby increasing their self-esteem and trying to accept their current situation. An unsafe and overcrowded ward with uninterested and nonchalant staff increased the risk of aggressive behavior. In the process of decreasing violence, the patients and the forensic psychiatric nursing staff interacted to create and maintain a safe environment.

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

BACKGROUND: There 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. METHOD: Twenty-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. RESULTS: The 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. CONCLUSION: The 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.

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.

Evaluation of a Digital COPD Education Program for Healthcare Professionals in Long-Term Care - A Mixed Methods Study.

Background: Lack of routines and competence among healthcare professionals have been reported as barriers to COPD management in long-term care. Online education could be used as a strategy to make COPD education more accessible. Purpose: The aim of this study was to evaluate a digital COPD education program for healthcare professionals in long-term care regarding feasibility, knowledge and working procedures. Methods: A randomized controlled feasibility trial with a convergent mixed methods design was conducted. Two municipalities in Sweden were randomized to intervention (n=20) or control (n=17). The intervention was a digital COPD education program accessible for three months. Data was collected through questionnaires on COPD-specific knowledge, conceptual knowledge, feasibility and usage of the COPD Web platform. Repeated individual interviews using a semi-structured interview guide was also performed. Quantitative and qualitative findings were merged using a mixed methods design. Results: The digital COPD education program appears feasible based on the expressed satisfaction of the healthcare workers and their reports that it supported them in their work. Across questionnaires, objective COPD-specific knowledge increased by 14 to 16 percentage points in the intervention group compared to 0 to 6 percentage points in the control group (p=0.001). The objective increase in COPD-specific knowledge was also captured in the interviews, where a perceived increase in knowledge led to increased security and focus on COPD management. Few changes in working procedures were expressed, but participants felt that attention was raised regarding COPD and the importance of preventive healthcare services. In addition, increased knowledge of healthcare services provided by other involved professions was emphasized, leading to discussions with other professions in relation to COPD management. Conclusion: A digital COPD education program is feasible and can increase the COPD-specific knowledge of healthcare professionals in long-term care, leading to increased focus on COPD-related issues. More comprehensive measures, including organizational changes, might be needed to change working procedures.

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.

Protocol for development, calibration and validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC).

INTRODUCTION: Assessing and measuring patients' chronic condition self-management needs are critical to quality health care and to related research. One in three adults around the world live with multiple chronic conditions. While many patient-reported measures of self-management have been developed, none has emerged as the gold standard, and all have one or more of the following limitations: (1) they fail to measure the different domains of self-management important to patients, (2) they lack sufficient specificity to support patient-centred care or identify the specific components of self-management interventions that work and/or (3) they lack suitability for patients with multiple chronic conditions. METHODS AND ANALYSIS: The Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) is being developed to overcome these shortcomings. It will measure respondents' perceived success (or difficulty) in self-managing seven domains important to patients. The protocol has three phases. Phase 1 is conceptual model development and item generation. Phase 2 is assessment of the relevance and understanding of items by people with chronic conditions. Phase 3 is item analysis, dimensionality assessment, scaling and preliminary validation of the PRISM-CC using an online survey of people with chronic conditions (n~750). The expected completion date is early 2021. ETHICS AND DISSEMINATION: This study will adhere to the Canadian Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans. Ethics approval for all phases has been obtained from the Nova Scotia Health Authority Research Ethics Board. Once completed, the PRISM-CC will be made available for research and healthcare at minimal to no cost.

Physical activity experiences of children and adolescents with asthma: a qualitative systematic review protocol.

OBJECTIVE: The objective of the review is to synthesize existing knowledge about experiences of children and adolescents with asthma related to participation in, or limitation of, physical activity. INTRODUCTION: Limitations of physical activity, expressed as a barrier of bodily movement, may relate to physiological restraints, as well as emotional and social delimitation, in children and adolescents with asthma. Participation in physical activity is related to management of asthma and is important for social inclusion. Through childhood and adolescence, physical activity enhances physical, cognitive, and social development, and a dose-response relationship between physical activity and several indicators of improved health has been established. Knowledge is needed about experiences of physical activity in children and adolescents with asthma to tailor care and implement exercise and physical activity supporting interventions into clinical practice. INCLUSION CRITERIA: This review will consider qualitative studies that include subjective experiences related to participation in, or limitation of, physical activity in children and adolescents (six to 18 years of age) with asthma. All contexts and countries will be included. METHODS: MEDLINE, Embase, PsycINFO, CINAHL, SPORTDiscus, SocINDEX, and Social Science Citation Index List will be searched for relevant studies. Studies published in English with no date limitation will be included. Study selection, assessment of methodological quality, data extraction, synthesis, and assessment of confidence in the findings will be conducted using the JBI meta-aggregation approach. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42020164797.

A systematic review examining whether community-based self-management programs for older adults with chronic conditions actively engage participants and teach them patient-oriented self-management strategies.

OBJECTIVE: To identify whether community-based Self-Management Programs (SMPs) actively engaged, or taught, individuals patient-oriented strategies; and whether having these attributes led to significant differences in outcomes. METHODS: This systematic review included randomized controlled trials (RCTs)and cluster RCTs reporting on community-based SMPs with a group component for older adults with chronic conditions. The ways SMPS actively engaged participants and whether they taught patient-oriented strategies were analyzed. All study outcomes were reported. RESULTS: The 31 included studies demonstrated community-based SMP programs actively engaged participants and provided strategies to improve health behaviour or care of their condition. Few included strategies to help manage the impact of conditions on their everyday lives. Seventy-nine percent of studies reported significant differences; variations in sample sizes and outcomes made it difficult to conclude whether having these attributes led to significant differences. CONCLUSION: SMPs are not supporting older adults to use strategies to address the impact of conditions on their everyday lives, addressing the needs of older adults with multiple conditions, nor assessing outcomes that align with the strategies taught. PRACTICE IMPLICATIONS: Health-care providers delivering SMPs to older adults need to tailor programs to the needs of older adults and assess whether participants are using strategies being proposed.

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.

Meeting the needs? Perceived support of a nurse-led lifestyle programme for young adults with mental illness in a primary health-care setting.

Being a young adult with mental illness challenges all aspects of health, including an increased risk for developing lifestyle-related diseases. There is a lack of lifestyle programmes in primary health care that target physical, mental, and social needs for young adults with mental illness. The aim of the present study was to describe the experiences of young adults with mental illness receiving support from a nurse-led lifestyle programme, and how this support was related to their life context, including challenges and coping strategies. Two focus groups and six individual interviews were performed with 13 young adults (16-25 years), and analysed using a qualitative content analysis. The findings showed that the young adults experienced challenges in their daily lives, including psychiatric symptoms, lack of social understanding, and loneliness. The study indicated that the programme could support lifestyle habits with its components of supportive interpersonal relationships, awareness of coping strategies, understanding of health and illness, and cognitive support (e.g. schedules and reminders). However, the programme could not meet everyone's needs for new social relationships or more comprehensive support. Even so, this nurse-led programme provides health information-management strategies that could easily be integrated in a primary health-care setting.