The Development of an Internet-Based Decision Coaching Guide to Encourage Audiology Care: The Results of a Participatory Design Approach

2020 ◽  
Vol 29 (3S) ◽  
pp. 546-563
Author(s):  
Rebecca S. Burden ◽  
Laura N. Galloway ◽  
Ann M. Rothpletz ◽  
Keira A. Glasheen ◽  
Jill E. Preminger
Keyword(s):  
Hearing Loss ◽  
Participatory Design ◽  
Management Strategies ◽  
Self Management ◽  
Online Program ◽  
Multiple Stakeholders ◽  
Multiple Focus ◽  
Study Team ◽  
Program Content ◽  
Stakeholder Input

Purpose The purpose of the research described here is to create a theoretically based, interactive online program to motivate adults with untreated hearing loss to seek audiology care. We describe the results of the participatory design (PD) approach used to increase uptake and adherence to the Internet-based program. Method Using information gathered from field experts ( n = 7), a program outline was generated by the study team. In keeping with PD principles, multiple focus groups and panels consisting of persons with hearing loss ( n = 26), frequent communication partners ( n = 6), audiologists ( n = 9), and other area experts ( n = 16) revised and expanded both content and design of the program in an iterative fashion. Results The proposed program was modified multiple times based on the input of stakeholders throughout the PD process. In particular, the scope of the program shifted from focusing on self-management strategies to decision coaching regarding the choice to visit an audiologist. Other specific program content and activities were modified based on stakeholder input. Conclusions The program evolved dramatically through the influence and input of multiple stakeholders as a result of the implementation of PD principles.

scholarly journals The Pain at Work Toolkit for Employees with Chronic or Persistent Pain: A Collaborative-Participatory Study

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 56
Author(s):  
Holly Blake ◽  
Sarah Somerset ◽  
Sarah Greaves
Keyword(s):  
Participatory Design ◽  
Online Survey ◽  
Management Strategies ◽  
Work Capacity ◽  
Persistent Pain ◽  
Self Management ◽  
Evidence Based ◽  
Or Education ◽  
Management Tools ◽  
Stakeholder Consultation

Self-management tools for people with chronic or persistent pain tend to focus on symptom reporting, treatment programmes or exercise and do not address barriers to work, facilitators of work ability, or workplace pain self-management strategies. We developed the Pain at Work (PAW) toolkit, an evidence-based digital toolkit to provide advice on how employees can self-manage their pain at work. In a collaborative-participatory design, 4-step Agile methodology (N = 452) was used to co-create the toolkit with healthcare professionals, employers and people with chronic or persistent pain. Step 1: stakeholder consultation event (n = 27) established content and format; Step 2: online survey with employees who have persistent pain (n = 274) showed employees fear disclosing their condition, and commonly report discrimination and lack of line manager support. Step 3: online employer survey (n = 107) showed employers rarely provide self-management materials or education around managing pain at work, occupational health recommendations for reasonable adjustments are not always actioned, and pain-related stigma is common. Step 4: Toolkit development integrated findings and recommendations from Steps 1–3, and iterative expert peer review was conducted (n = 40). The PAW toolkit provides (a) evidence-based guidelines and signposting around work-capacity advice and support; (b) self-management strategies around working with chronic or persistent pain, (c) promotion of healthy lifestyles, and quality of life at work; (d) advice on adjustments to working environments and workplace solutions to facilitate work participation.

The Relationship Between Hearing Loss Self-Management and Hearing Aid Benefit and Satisfaction

2019 ◽  
Vol 28 (2) ◽  
pp. 274-284 ◽  
Author(s):  
Elizabeth Convery ◽  
Gitte Keidser ◽  
Louise Hickson ◽  
Carly Meyer
Keyword(s):  
Decision Making ◽  
Hearing Loss ◽  
Hearing Aids ◽  
Clinical Decision Making ◽  
Hearing Aid ◽  
Well Being ◽  
Self Report ◽  
Self Management ◽  
Hearing Aid Benefit ◽  
The Relationship

Purpose Hearing loss self-management refers to the knowledge and skills people use to manage the effects of hearing loss on all aspects of their daily lives. The purpose of this study was to investigate the relationship between self-reported hearing loss self-management and hearing aid benefit and satisfaction. Method Thirty-seven adults with hearing loss, all of whom were current users of bilateral hearing aids, participated in this observational study. The participants completed self-report inventories probing their hearing loss self-management and hearing aid benefit and satisfaction. Correlation analysis was used to investigate the relationship between individual domains of hearing loss self-management and hearing aid benefit and satisfaction. Results Participants who reported better self-management of the effects of their hearing loss on their emotional well-being and social participation were more likely to report less aided listening difficulty in noisy and reverberant environments and greater satisfaction with the effect of their hearing aids on their self-image. Participants who reported better self-management in the areas of adhering to treatment, participating in shared decision making, accessing services and resources, attending appointments, and monitoring for changes in their hearing and functional status were more likely to report greater satisfaction with the sound quality and performance of their hearing aids. Conclusion Study findings highlight the potential for using information about a patient's hearing loss self-management in different domains as part of clinical decision making and management planning.

A Case Study: Unique Challenges of an Adolescent Female With Autism Spectrum Disorder

2020 ◽  
Vol 5 (1) ◽  
pp. 314-325
Author(s):  
Kimberly F. Frazier ◽  
Jessica Collier ◽  
Rachel Glade
Keyword(s):  
Autism Spectrum Disorder ◽  
Cognitive Abilities ◽  
Social Cognitive ◽  
Social Performance ◽  
Management Strategies ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Self Management ◽  
Adolescent Female ◽  
Social Thinking

Background The aim of this study was to determine the clinical efficacy of combining self-management strategies and a social thinking approach to address the social performance and executive function of an adolescent female with autism spectrum disorder. Method This research examined the effects of a social knowledge training program, “Think Social,” as well as strategies to improve higher order cognitive abilities. Results and Conclusion Although quantitative improvement was not found, several qualitative gains in behavior were noted for the participants of this study, suggesting a benefit from using structured environmental cues of self-management strategies, as well as improved social understanding through social cognitive training.

scholarly journals Feasibility of an mHealth self-management intervention for children and adolescents with sickle cell disease and their families

2021 ◽  
Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Amy Gulledge ◽  
Kenneth Ruggiero ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Rating Scale ◽  
Management Strategies ◽  
Self Management ◽  
Cell Disease ◽  
Vessel Occlusion ◽  
Feasibility Assessment ◽  
Management Intervention ◽  
Scale Scores

Abstract Sickle cell disease (SCD) is an inherited hemoglobinopathy that leads to blood vessel occlusion and multiorgan complications, including pain, that may be experienced daily. Symptom management often begins at home, and tools are needed to support self-management strategies that can be implemented by children with SCD and families. The purpose of this study was to assess the feasibility of the mHealth self-management intervention (application) Voice Crisis Alert V2 for children with SCD and families. Feasibility assessment was guided by the Reach, Efficacy, Adoption, Implementation, and Maintenance framework. Data were collected with 60 dyads (children with SCD/caregivers) at four time points. Self-management data were collected via application use, and postintervention interviews were conducted. Analyses included descriptive statistics and constant comparison with directed content analysis. Recruitment was completed in 28 weeks, with 82% retention at end-of-intervention. Mobile Application Rating Scale scores and interview data indicated high satisfaction. From baseline to mid-intervention, 94% of dyads used the application (75% of total use); 45% used the application from mid-intervention to the end-of-intervention. Dyads made 2,384 actions in the application; the most commonly used features were recording health history and recording and tracking symptoms. Few reported issues with the application; most issues occurred early in the study and were corrected. After the intervention period was completed, 37% continued to use the application. Feasibility was confirmed by meeting recruitment and retention goals, high adoption of the application, and high reported satisfaction with the application. Challenges with sustained use were encountered, and areas for improvement were identified.

scholarly journals Augmenting the Clinical Data Sources for Enigmatic Diseases: A Cross-Sectional Study of Self-Tracking Data and Clinical Documentation in Endometriosis

2020 ◽  
Vol 11 (05) ◽  
pp. 769-784
Author(s):  
Ipek Ensari ◽  
Adrienne Pichon ◽  
Sharon Lipsky-Gorman ◽  
Suzanne Bakken ◽  
Noémie Elhadad
Keyword(s):  
Additional Data ◽  
Intraclass Correlation ◽  
Management Strategies ◽  
The Self ◽  
Self Management ◽  
Cross Sectional ◽  
Two Samples ◽  
Data Source ◽  
Daily Function ◽  
Over Time

Abstract Background Self-tracking through mobile health technology can augment the electronic health record (EHR) as an additional data source by providing direct patient input. This can be particularly useful in the context of enigmatic diseases and further promote patient engagement. Objectives This study aimed to investigate the additional information that can be gained through direct patient input on poorly understood diseases, beyond what is already documented in the EHR. Methods This was an observational study including two samples with a clinically confirmed endometriosis diagnosis. We analyzed data from 6,925 women with endometriosis using a research app for tracking endometriosis to assess prevalence of self-reported pain problems, between- and within-person variability in pain over time, endometriosis-affected tasks of daily function, and self-management strategies. We analyzed data from 4,389 patients identified through a large metropolitan hospital EHR to compare pain problems with the self-tracking app and to identify unique data elements that can be contributed via patient self-tracking. Results Pelvic pain was the most prevalent problem in the self-tracking sample (57.3%), followed by gastrointestinal-related (55.9%) and lower back (49.2%) pain. Unique problems that were captured by self-tracking included pain in ovaries (43.7%) and uterus (37.2%). Pain experience was highly variable both across and within participants over time. Within-person variation accounted for 58% of the total variance in pain scores, and was large in magnitude, based on the ratio of within- to between-person variability (0.92) and the intraclass correlation (0.42). Work was the most affected daily function task (49%), and there was significant within- and between-person variability in self-management effectiveness. Prevalence rates in the EHR were significantly lower, with abdominal pain being the most prevalent (36.5%). Conclusion For enigmatic diseases, patient self-tracking as an additional data source complementary to EHR can enable learning from the patient to more accurately and comprehensively evaluate patient health history and status.

scholarly journals Effectiveness of self-management interventions in inflammatory arthritis: a systematic review informing the 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis

RMD Open ◽  
2021 ◽  
Vol 7 (2) ◽  
pp. e001647
Author(s):  
Andréa Marques ◽  
Eduardo Santos ◽  
Elena Nikiphorou ◽  
Ailsa Bosworth ◽  
Loreto Carmona
Keyword(s):  
Systematic Review ◽  
Full Text ◽  
Inflammatory Arthritis ◽  
Data Extraction ◽  
Management Strategies ◽  
Psychosocial Interventions ◽  
Behavioural Therapy ◽  
Self Management ◽  
Cochrane Library ◽  
Management Interventions

ObjectiveTo perform a systematic review (SR) on the effectiveness of self-management interventions, in order to inform the European League Against Rheumatism Recommendations for its implementation in patients with inflammatory arthritis (IA).MethodsThe SR was conducted according to the Cochrane Handbook and included adults (≥18 years) with IA. The search strategy was run in Medline through PubMed, Embase, Cochrane Library, CINAHL Plus with Full Text, and PEDro. The assessment of risk of bias, data extraction and synthesis were performed by two reviewers independently. A narrative Summary of Findings was provided according to the Grading of Recommendations, Assessment, Development and Evaluation.ResultsFrom a total 1577 references, 57 were selected for a full-text review, and 32 studies fulfilled the inclusion criteria (19 randomised controlled trials (RCTs) and 13 SRs). The most studied self-management components were specific interactive disease education in ten RCTs, problem solving in nine RCTs, cognitive–behavioural therapy in eight RCTs, goal setting in six RCTs, patient education in five RCTs and response training in two RCTs. The most studied interventions were multicomponent or single exercise/physical activity in six SRs, psychosocial interventions in five SRs and education in two SRs. Overall, all these specific components and interventions of self-management have beneficial effects on IAs-related outcomes.ConclusionsThe findings confirm the beneficial effect of the self-management interventions in IA and the importance of their implementation. Further research should focus on the understanding that self-management is a complex intervention to allow the isolation of the effectiveness of its different components.

scholarly journals A qualitative investigation of LGBTQ+ young people’s experiences and perceptions of self-managing their mental health

2021 ◽  
Author(s):  
Rosa Town ◽  
Daniel Hayes ◽  
Peter Fonagy ◽  
Emily Stapley
Keyword(s):  
Mental Health ◽  
Young People ◽  
Management Strategies ◽  
Intervention Development ◽  
Community Support ◽  
Self Management ◽  
Future Research ◽  
Youth Groups ◽  
Coping Methods ◽  
Group A

AbstractThere is evidence that young people generally self-manage their mental health using self-care strategies, coping methods and other self-management techniques, which may better meet their needs or be preferable to attending specialist mental health services. LGBTQ+ young people are more likely than their peers to experience a mental health difficulty and may be less likely to draw on specialist support due to fears of discrimination. However, little is known about LGBTQ+ young people’s experiences and perceptions of self-managing their mental health. Using a multimodal qualitative design, 20 LGBTQ+ young people participated in a telephone interview or an online focus group. A semi-structured schedule was employed to address the research questions, which focussed on LGBTQ+ young people’s experiences and perceptions of self-managing their mental health, what they perceived to stop or help them to self-manage and any perceived challenges to self-management specifically relating to being LGBTQ+ . Reflexive thematic analysis yielded three key themes: (1) self-management strategies and process, (2) barriers to self-management and (3) facilitators to self-management. Participants’ most frequently mentioned self-management strategy was ‘speaking to or meeting up with friends or a partner’. Both barriers and facilitators to self-management were identified which participants perceived to relate to LGBTQ+ identity. Social support, LGBTQ+ youth groups and community support were identified as key facilitators to participants’ self-management of their mental health, which merits further investigation in future research. These findings also have important implications for policy and intervention development concerning LGBTQ+ young people’s mental health.

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