Parents’ experiences of transitioning to home with a very-low-birthweight infant: A meta-ethnography

Medical-technological advances and neurodevelopmental care have improved the survival of extremely- and very-low-birthweight infants born before 32 weeks’ gestation. After months in neonatal care, the infants are discharged, and parents exited but full of anxiety. This review is designed as a meta-ethnography, addressing parents’ discharge experiences to comprehend the synthesised research, which includes 12 eligible studies. From the analysis, we constructed three themes: ‘approaching discharge with both uncertainty and confidence’; ‘discharge as a longed-for though disordering turning point’; and ‘facing joys, worries and multiple challenges when at home’. The overarching interpretation was ‘discharge as double-edged sword’. We conclude that bringing home very-low-birthweight infants is a joyful event, yet parents also experience discharge as never- endingly worrying, as a time filled with challenges to which parents must adapt and as necessitating contin- uous support from knowledgeable providers.publishedVersio

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.publishedVersio

A pattern-oriented approach : Practical advice about longitudinal qualitative analysis procedures

Background: The number of published longitudinal qualitative studies has increased over the last couple of years. However, there is no consensus in how longitudinal analysis should be conducted or presented. Overall, little literature about the procedures of doing qualitative longitudinal analysis has been published. The aim of this presentation is to describe a procedure for conducting longitudinal qualitative analysis (e.g., a pattern oriented approach). Method: Independently of each other the two authors have developed a similar approach to analyze interview data over time. The two individual analyses have been compared and common features identified. Results: A pattern-oriented analysis focuses upon how individuals (or phenomena) move through a process/time in identifiable patterns. When other longitudinal analysis approaches might emphasize a main process, a pattern-oriented approach accounts for the individual variance in the context of time and change. The key features of the analysis procedure include; ‘identifying the process’, ‘summarized description’ and ‘using matrixes’. Conclusion: A pattern-oriented analysis is a fruitful way of viewing ways of changing over time and thus understanding complex life processes

Att vara kreativ och resursstark : Individers förmåga och möjlighet till egenvård av kronisk sjukdom

Individuals’ self-management styles are crucial for how they manage to live with illness. Commonly investigated factors include social support, self-efficacy, health beliefs, and demographics. There is a gap in the literature with regard to in-depth studies of how those factors actually influence an individual’s self-management.   The aim of this thesis was to investigate the underlying mechanisms of self-management from the perspective of individuals living with chronic illness.   Interviews were conducted with 47 individuals with various chronic illnesses, some of them repeatedly over two and a half years (a total of 107 interviews). The material was analysed with; constructive grounded theory, content analysis, phenomenography, and interpretive description.   The Self-management Support Model identified aspects that influenced participants’ self-management: economic and social situation, social support, views and perspectives on illness, attribution of responsibility, and ability to integrate self-management into an overall life situation. For example, individuals with a life-oriented or disease-oriented perspective on illness prioritized different aspects of self-management. People who attributed internal responsibility performed a more complex self-management regimen than individuals who attributed external responsibility. In conclusion, individuals who were creative and resourceful had a better chance of tailoring a self-management regimen that suited them well. People in more disadvantaged positions (e.g., financial strain, limited support, or severe intrusive illness) experienced difficulty in finding a method of self-management that fit their life situation.   These findings can inspire healthcare providers to initiate a reflective dialogue about self-management with their patients.Exploring individuals’ conceptions as a way to understand self-management among people living with long term medical condition

Att vara kreativ och resursstark : Individers förmåga och möjlighet till egenvård av kronisk sjukdom

Individuals’ self-management styles are crucial for how they manage to live with illness. Commonly investigated factors include social support, self-efficacy, health beliefs, and demographics. There is a gap in the literature with regard to in-depth studies of how those factors actually influence an individual’s self-management.   The aim of this thesis was to investigate the underlying mechanisms of self-management from the perspective of individuals living with chronic illness.   Interviews were conducted with 47 individuals with various chronic illnesses, some of them repeatedly over two and a half years (a total of 107 interviews). The material was analysed with; constructive grounded theory, content analysis, phenomenography, and interpretive description.   The Self-management Support Model identified aspects that influenced participants’ self-management: economic and social situation, social support, views and perspectives on illness, attribution of responsibility, and ability to integrate self-management into an overall life situation. For example, individuals with a life-oriented or disease-oriented perspective on illness prioritized different aspects of self-management. People who attributed internal responsibility performed a more complex self-management regimen than individuals who attributed external responsibility. In conclusion, individuals who were creative and resourceful had a better chance of tailoring a self-management regimen that suited them well. People in more disadvantaged positions (e.g., financial strain, limited support, or severe intrusive illness) experienced difficulty in finding a method of self-management that fit their life situation.   These findings can inspire healthcare providers to initiate a reflective dialogue about self-management with their patients.Exploring individuals’ conceptions as a way to understand self-management among people living with long term medical condition

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

Managing acoustic noise within MRI : a qualitative interview study among Swedish radiographers

Introduction: Acoustic noise from magnetic resonance imaging (MRI) can cause hearing loss and needs to be mitigated to ensure the safety of patients and personnel. Capturing MR personnel's insights is crucial for guiding the development and future applications of noise-reduction technology. This study aimed to explore how MR radiographers manage acoustic noise in clinical MR settings. Methods: Using a qualitative design, we conducted semi-structured individual interviews with fifteen MR radiographers from fifteen hospitals around Sweden. We focused on the clinical implications of participants’ noise management, using an interpretive description approach. We also identified sociotechnical interactions between People, Environment, Tools, and Tasks (PETT) by adopting a Human Factors/Ergonomics framework. Interview data were analyzed inductively with thematic analysis (Braun and Clarke). Results: The analysis generated three main themes regarding MR radiographers’ noise management: (I) Navigating Occupational Noise: Risk Management and Adaptation; (II) Protecting the Patient and Serving the Exam, and (III) Establishing a Safe Healthcare Environment with Organizational Support. Conclusion: This study offers insights into radiographers’ experiences of managing acoustic noise within MRI, and the associated challenges. Radiographers have adopted multiple strategies to protect patients and themselves from adverse noise-related effects. However, they require tools and support to manage this effectively, suggesting a need for organizations to adopt more proactive, holistic approaches to safety initiatives. Implications for practice: The radiographers stressed the importance of a soundproofed work environment to minimize occupational adverse health effects and preserve work performance. They acknowledge noise as a common contributor to patient distress and discomfort. Providing options like earplugs, headphones, mold putty, software-optimized “quiet” sequences, and patient information were important tools. Fostering a safety culture requires proactive safety efforts and support from colleagues and management

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

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.Living with a neurological condition in Canada (LINC

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 provideinsight and understanding into the complex and interdependent self-management strategies peoplewith neurological conditions use to manage everyday life. Methods: As part of a national Canadian study, structured telephone interviews were conducted monthlyfor eleven months, with 117 people living with one or more neurological conditions. Answers to fiveopen-ended questions were analyzed using qualitative content analysis. A total of 7236 statements wereanalyzed. Results: Findings are presented in two overarching patterns: 1) self-management pervades all aspects oflife, and 2) self-management is a chain of decisions and behaviours. Participants emphasizedmanagement of daily activities and social relationships as important to maintaining meaning in theirlives. Conclusion: Managing everyday life with a neurological condition includes a wide range of diversestrategies that often interact and complement each other. Some people need to intentionally manageevery aspect of everyday life. Practice implications: For people living with neurological conditions, there is a need for health providersand systems to go beyond standard advice for self-management. Self-management support is besttailored to each individual, their life context and the realities of their illness trajectory