Supporting Self-Management and Quality of Life in Bipolar Disorder with the Beta PolarUs App: Protocol for a Mixed-Methods Study (Preprint)

2022 ◽  
Author(s):  
Erin E Michalak ◽  
Steven J Barnes ◽  
Emma Morton ◽  
Heather O'Brien ◽  
Greg Murray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Management Strategies ◽  
Community Based Participatory Research ◽  
Self Management ◽  
Community Based ◽  
Self Monitoring ◽  
Web Based ◽  
Beta Version

BACKGROUND Quality of life (QoL) is increasingly recognised as a key outcome of self-management interventions for bipolar disorder (BD). Mobile phone applications (apps) can increase access to evidence-based self-management strategies and provide real-time support. However, while individuals with lived experience desire support with monitoring and improving broader health domains, existing BD apps largely target mood symptoms only. Further, evidence from the broader mHealth literature has shown that the desires and goals of end-users are not adequately taken into account during app development, and as a result engagement with mental health apps is suboptimal. To capitalise on the potential of apps to optimise wellness in BD, there is a need for interventions developed in consultation with real-world users that are designed to support QoL self-monitoring and self-management. Objective: This mixed methods pilot study is designed to evaluate the beta version of the newly developed PolarUs app, which aims to support QoL self-monitoring and self-management in people with BD. Developed using a community-based participatory research framework, the PolarUs app builds on the web-based adaptation of a BD-specific QoL self-assessment measure, and integrates material from a web-based portal providing information on evidence-informed self-management strategies in BD. OBJECTIVE The primary objectives of this project are to: (1) evaluate PolarUs app feasibility (via behavioral usage metrics); (2) evaluate PolarUs impact (via the Brief Quality of Life in Bipolar Disorders, QoL.BD scale, our primary outcomes measure); and (3) explore engagement with the PolarUs app (via both quantitative and qualitative methods). METHODS Study participants will be North American residents (N=150) aged 18-65 years with a DSM-5 diagnosis of BD-I, BD-II or BD not otherwise specified (NOS) as assessed by a structured diagnostic interview. An embedded mixed-methods research design will be adopted; qualitative interviews with a purposefully selected sub-sample (~n=30) of participants will be conducted to explore in more depth feasibility, impact and engagement with the PolarUs app over the 12-week study period. RESULTS At the time of publication of this protocol, the development of the beta version of the PolarUs app is complete. Participant enrollment is expected to begin in February 2022. Data collection is expected to be completed by December 2022. CONCLUSIONS Beyond contributing knowledge on the feasibility and impacts of a novel app to support QoL and self-management in BD, this study is also expected to provide new knowledge on engagement with mHealth apps. Furthermore, it is expected to function as a case study of successful co-design between individuals living with BD, clinicians who specialise in the treatment of BD, and BD researchers, providing a template for future use of community-based participatory research frameworks in mHealth intervention development. Results will be used to further refine the PolarUs app and inform the design of a larger clinical trial.

scholarly journals Supporting Self-Management in Bipolar Disorder: Mixed-Methods Knowledge Translation Study (Preprint)

2019 ◽  
Author(s):  
Erin E Michalak ◽  
Emma Morton ◽  
Steven J Barnes ◽  
Rachelle Hole ◽  
Greg Murray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bipolar Disorder ◽  
Mixed Methods ◽  
Chronic Disease ◽  
Knowledge Translation ◽  
Digital Health ◽  
Self Management ◽  
Web Based ◽  
Health Technologies

BACKGROUND Self-management is increasingly recognized as an important method through which individuals with bipolar disorder (BD) may cope with symptoms and improve quality of life. Digital health technologies have strong potential as a method to support the application of evidence-informed self-management strategies in BD. Little is known, however, about how to most effectively maximize user engagement with digital platforms. OBJECTIVE The aims of this study were (1) to create an innovative Web-based Bipolar Wellness Centre, (2) to conduct a mixed-methods (ie, quantitative and qualitative) evaluation to assess the impact of different sorts of engagement (ie, knowledge translation [KT]), and (3) to support engagement with the self-management information in the Bipolar Wellness Centre. METHODS The project was implemented in 2 phases. In phase 1, community-based participatory research and user-centered design methods were used to develop a website (Bipolar Wellness Centre) housing evidence-informed tools and strategies for self-management of BD. In phase 2, a mixed-methods evaluation was conducted to explore the potential impact of 4 KT strategies (Web-based webinars, Web-based videos, Web-based one-to-one Living Library peer support, and in-person workshops). Quantitative assessments occurred at 2 time points—preintervention and 3 weeks postintervention. Purposive sampling was used to recruit a subsample of participants for the qualitative interviews, ensuring each KT modality was represented, and interviews occurred approximately 3 weeks postintervention. RESULTS A total of 94 participants were included in the quantitative analysis. Responses to evaluative questions about engagement were broadly positive. When averaged across the 4 KT strategies, significant improvements were observed on the Bipolar Recovery Questionnaire (F1,77=5.887; P=.02) and Quality of Life in Bipolar Disorder (F1,77=8.212; P=.005). Nonsignificant improvements in positive affect and negative affect were also observed. The sole difference that emerged between KT strategies related to the Chronic Disease Self-Efficacy measure, which decreased after participation in the webinar and video arms but increased after the Living Library and workshop arms. A subsample of 43 participants was included in the qualitative analyses, with the majority of participants describing positive experiences with the 4 KT strategies; peer contact was emphasized as a benefit across all strategies. Infrequent negative experiences were reported in relation to the webinar and video strategies, and included technical difficulties, the academic tone of webinars, and feeling unable to relate to the actor in the videos. CONCLUSIONS This study adds incremental evidence to a growing literature that suggests digital health technologies can provide effective support for self-management for people with BD. The finding that KT strategies could differentially impact chronic disease self-efficacy (hypothesized as being a product of differences in degree of peer contact) warrants further exploration. Implications of the findings for the development of evidence-informed apps for BD are discussed in this paper.

scholarly journals Experiences of a Web-Based Quality of Life Self-Monitoring Tool for Individuals With Bipolar Disorder: A Qualitative Exploration (Preprint)

2019 ◽  
Author(s):  
Emma Morton ◽  
Rachelle Hole ◽  
Greg Murray ◽  
Simone Buzwell ◽  
Erin Michalak
Keyword(s):  
Quality Of Life ◽  
Bipolar Disorder ◽  
Assessment Tool ◽  
Self Management ◽  
Care Providers ◽  
Self Assessment ◽  
Self Monitoring ◽  
Web Based ◽  
Qualitative Exploration

BACKGROUND Self-monitoring of symptoms is a cornerstone of psychological interventions in bipolar disorder (BD), but individuals with lived experience also value tracking holistic outcomes, such as quality of life (QoL). Importantly, self-monitoring is not always experienced positively by people with BD and may have lower than expected rates of engagement. Therefore, before progressing into QoL tracking tools, it is important to explore user perspectives to identify possible risks and benefits, optimal methods to support engagement, and possible avenues to integrate QoL self-monitoring practices into clinical work. OBJECTIVE This study aimed to conduct a qualitative exploration of how individuals with BD engaged with a Web-based version of a BD-specific QoL self-monitoring instrument, the QoL tool. METHODS A total of 43 individuals with BD engaged with a self-management intervention with an optional Web-based QoL self-assessment tool as part of an overarching mixed method study. Individuals were later interviewed about personal experiences of engagement with the intervention, including experiences of gauging their own QoL. A thematic analysis was used to identify salient aspects of the experience of QoL self-monitoring in BD. RESULTS In total, 4 categories describing people’s experiences of QoL self-monitoring were identified: (1) breadth of QoL monitoring, (2) highlighting the positive, (3) connecting self-monitoring to action, and (4) self-directed patterns of use. CONCLUSIONS The findings of this research generate novel insights into ways in which individuals with BD experience the Web-based QoL self-assessment tool. The value of tracking the breadth of domains was an overarching aspect, facilitating the identification of both areas of strength and life domains in need of intervention. Importantly, monitoring QoL appeared to have an inherently therapeutic quality, through validating flourishing areas and reinforcing self-management efforts. This contrasts the evidence suggesting that symptom tracking may be distressing because of its focus on negative experiences and positions QoL as a valuable adjunctive target of observation in BD. Flexibility and personalization of use of the QoL tool were key to engagement, informing considerations for health care providers wishing to support self-monitoring and future research into Web- or mobile phone–based apps.

scholarly journals Experiences of a Web-Based Quality of Life Self-Monitoring Tool for Individuals With Bipolar Disorder: A Qualitative Exploration

10.2196/16121 ◽  
2019 ◽  
Vol 6 (12) ◽  
pp. e16121 ◽  
Author(s):  
Emma Morton ◽  
Rachelle Hole ◽  
Greg Murray ◽  
Simone Buzwell ◽  
Erin Michalak
Keyword(s):  
Quality Of Life ◽  
Bipolar Disorder ◽  
Assessment Tool ◽  
Self Management ◽  
Care Providers ◽  
Self Assessment ◽  
Self Monitoring ◽  
Web Based ◽  
Qualitative Exploration

Background Self-monitoring of symptoms is a cornerstone of psychological interventions in bipolar disorder (BD), but individuals with lived experience also value tracking holistic outcomes, such as quality of life (QoL). Importantly, self-monitoring is not always experienced positively by people with BD and may have lower than expected rates of engagement. Therefore, before progressing into QoL tracking tools, it is important to explore user perspectives to identify possible risks and benefits, optimal methods to support engagement, and possible avenues to integrate QoL self-monitoring practices into clinical work. Objective This study aimed to conduct a qualitative exploration of how individuals with BD engaged with a Web-based version of a BD-specific QoL self-monitoring instrument, the QoL tool. Methods A total of 43 individuals with BD engaged with a self-management intervention with an optional Web-based QoL self-assessment tool as part of an overarching mixed method study. Individuals were later interviewed about personal experiences of engagement with the intervention, including experiences of gauging their own QoL. A thematic analysis was used to identify salient aspects of the experience of QoL self-monitoring in BD. Results In total, 4 categories describing people’s experiences of QoL self-monitoring were identified: (1) breadth of QoL monitoring, (2) highlighting the positive, (3) connecting self-monitoring to action, and (4) self-directed patterns of use. Conclusions The findings of this research generate novel insights into ways in which individuals with BD experience the Web-based QoL self-assessment tool. The value of tracking the breadth of domains was an overarching aspect, facilitating the identification of both areas of strength and life domains in need of intervention. Importantly, monitoring QoL appeared to have an inherently therapeutic quality, through validating flourishing areas and reinforcing self-management efforts. This contrasts the evidence suggesting that symptom tracking may be distressing because of its focus on negative experiences and positions QoL as a valuable adjunctive target of observation in BD. Flexibility and personalization of use of the QoL tool were key to engagement, informing considerations for health care providers wishing to support self-monitoring and future research into Web- or mobile phone–based apps.

scholarly journals Supporting Self-Management in Bipolar Disorder: Mixed-Methods Knowledge Translation Study

10.2196/13493 ◽  
2019 ◽  
Vol 6 (4) ◽  
pp. e13493 ◽  
Author(s):  
Erin E Michalak ◽  
Emma Morton ◽  
Steven J Barnes ◽  
Rachelle Hole ◽  
Greg Murray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bipolar Disorder ◽  
Mixed Methods ◽  
Chronic Disease ◽  
Knowledge Translation ◽  
Digital Health ◽  
Self Management ◽  
Web Based ◽  
Health Technologies

Background Self-management is increasingly recognized as an important method through which individuals with bipolar disorder (BD) may cope with symptoms and improve quality of life. Digital health technologies have strong potential as a method to support the application of evidence-informed self-management strategies in BD. Little is known, however, about how to most effectively maximize user engagement with digital platforms. Objective The aims of this study were (1) to create an innovative Web-based Bipolar Wellness Centre, (2) to conduct a mixed-methods (ie, quantitative and qualitative) evaluation to assess the impact of different sorts of engagement (ie, knowledge translation [KT]), and (3) to support engagement with the self-management information in the Bipolar Wellness Centre. Methods The project was implemented in 2 phases. In phase 1, community-based participatory research and user-centered design methods were used to develop a website (Bipolar Wellness Centre) housing evidence-informed tools and strategies for self-management of BD. In phase 2, a mixed-methods evaluation was conducted to explore the potential impact of 4 KT strategies (Web-based webinars, Web-based videos, Web-based one-to-one Living Library peer support, and in-person workshops). Quantitative assessments occurred at 2 time points—preintervention and 3 weeks postintervention. Purposive sampling was used to recruit a subsample of participants for the qualitative interviews, ensuring each KT modality was represented, and interviews occurred approximately 3 weeks postintervention. Results A total of 94 participants were included in the quantitative analysis. Responses to evaluative questions about engagement were broadly positive. When averaged across the 4 KT strategies, significant improvements were observed on the Bipolar Recovery Questionnaire (F1,77=5.887; P=.02) and Quality of Life in Bipolar Disorder (F1,77=8.212; P=.005). Nonsignificant improvements in positive affect and negative affect were also observed. The sole difference that emerged between KT strategies related to the Chronic Disease Self-Efficacy measure, which decreased after participation in the webinar and video arms but increased after the Living Library and workshop arms. A subsample of 43 participants was included in the qualitative analyses, with the majority of participants describing positive experiences with the 4 KT strategies; peer contact was emphasized as a benefit across all strategies. Infrequent negative experiences were reported in relation to the webinar and video strategies, and included technical difficulties, the academic tone of webinars, and feeling unable to relate to the actor in the videos. Conclusions This study adds incremental evidence to a growing literature that suggests digital health technologies can provide effective support for self-management for people with BD. The finding that KT strategies could differentially impact chronic disease self-efficacy (hypothesized as being a product of differences in degree of peer contact) warrants further exploration. Implications of the findings for the development of evidence-informed apps for BD are discussed in this paper.

scholarly journals Intervention and Evaluation of Mobile Health Technologies in Management of Patients Undergoing Chronic Dialysis: Scoping Review (Preprint)

2019 ◽  
Author(s):  
Yang Yang ◽  
Helen Chen ◽  
Hammad Qazi ◽  
Plinio P Morita
Keyword(s):  
Quality Of Life ◽  
Mobile Health ◽  
Scoping Review ◽  
Behavioral Change ◽  
User Acceptance ◽  
Adult Patients ◽  
Chronic Dialysis ◽  
Self Monitoring ◽  
Web Based

BACKGROUND Studies have shown the effectiveness and user acceptance of mobile health (mHealth) technologies in managing patients with chronic kidney disease (CKD). However, incorporating mHealth technology into the standard care of patients with CKD still faces many challenges. To our knowledge, there are no reviews on mHealth interventions and their assessments concerning the management of patients undergoing dialysis. OBJECTIVE This study provided a scoping review on existing apps and interventions of mHealth technologies in adult patients undergoing chronic dialysis and identified the gaps in patient outcome assessment of mHealth technologies in the literature. METHODS We systematically searched PubMed (MEDLINE), Scopus, and the Cumulative Index to Nursing and Allied Health Literature databases, as well as gray literature sources. Two keywords, “mHealth” and “dialysis,” were combined to address the main concepts of the objectives. Inclusion criteria were as follows: (1) mHealth interventions, which are on a smartphone, tablet, or web-based portals that are accessible through mobile devices; and (2) adult patients (age ≥18 years) on chronic dialysis. Only English papers published from January 2008 to October 2018 were included. Studies with mHealth apps for other chronic conditions, based on e-consultation or videoconferencing, non-English publications, and review papers were excluded. RESULTS Of the 1054 papers identified, 22 met the inclusion and exclusion criteria. Most studies (n=20) were randomized controlled trials and cohort studies. These studies were carried out in 7 countries. The main purposes of these mHealth interventions were as follows: nutrition or dietary self-monitoring (n=7), remote biometric monitoring (n=7), web-based portal (n=4), self-monitoring of in-session dialysis-specific information (n=3), and self-monitoring of lifestyle or behavioral change (n=1). The outcomes of the 22 included studies were organized into five categories: (1) patient satisfaction and acceptance, (2) clinical effectiveness, (3) economic assessment, (4) health-related quality of life, and (5) impact on lifestyle or behavioral change. The mHealth interventions showed neutral to positive results in chronic dialysis patient management, reporting no to significant improvement of dialysis-specific measurements and some components of the overall quality of life assessment. Evaluation of these mHealth interventions consistently demonstrated evidence in patients’ satisfaction, high level of user acceptance, and reduced use of health resources and cost savings to health care services. However, there is a lack of studies evaluating safety, organizational, sociocultural, ethical, and legal aspects of mHealth technologies. Furthermore, a comprehensive cost-effectiveness and cost-benefit analysis of adopting mHealth technologies was not found in the literature. CONCLUSIONS The gaps identified in this study will inform the creation of health policies and organizational support for mHealth implementation in patients undergoing dialysis. The findings of this review will inform the development of a comprehensive service model that utilizes mHealth technologies for home monitoring and self-management of patients undergoing chronic dialysis.

Application of Community-Based Participatory Research Methods to a Study of Complementary Medicine Interventions at End of Life

2005 ◽  
Vol 10 (2) ◽  
pp. 91-104 ◽  
Author(s):  
Anna-leila Williams ◽  
Peter A. Selwyn ◽  
Ruth McCorkle ◽  
Susan Molde ◽  
Lauren Liberti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Complementary Medicine ◽  
Participatory Research ◽  
Community Based Participatory Research ◽  
Academic Community ◽  
Open Communication ◽  
Community Based ◽  
End Stage

Community-based participatory research (CBPR) principles can be successfully applied to the design and implementation of a complementary medicine study for adults with end-stage AIDS. The Yale Prevention Research Center partnered with Leeway, Inc., an AIDS-dedicated nursing facility, and other academic and clinical entities to conduct a randomized, controlled pilot trial of meditation and massage on quality of life at the end of life. Using CBPR principles, a methodology was developed that was scientifically rigorous, highly respectful, and acceptable to the 91% minority study population. Using continuous, open communication among all involved parties, challenges were satisfactorily addressed in a timely manner. Fifty-eight residents (97% of those eligible) with end-stage AIDS participated from November 2001 to September 2003. Subjects received 1-month interventions of meditation, massage, combined meditation and massage, or standard care. The study of quality-of-life in end-stage AIDS poses unique challenges well met by applying CBPR principles to an academic-community research partnership.

Life-balance self-management programme for community-based older adults living with chronic disease: a feasibility study

2016 ◽  
Vol 4 (3) ◽  
pp. 459 ◽  
Author(s):  
Beverley Ann Burrell ◽  
Jennifer Jordan ◽  
Marie Crowe ◽  
Amanda Wilkinson ◽  
Jonathan Williman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Chronic Disease ◽  
Management Programme ◽  
Self Management ◽  
Community Based ◽  
Life Balance ◽  
Term Condition

Rationale, aims and objectives: Health management strategies are aimed at promoting self-management, healthy lifestyle choices to improve health status and quality of life while addressing cost-effectiveness in health services. We aimed to develop a Life-balance Self-management Programme (LBSP) to test whether taking a trans-diagnostic approach to education combined with presenting mindfulness concepts would enhance self-management with older people with at least one long term condition. This study aimed to test the feasibility of the LBSP in terms of its recruitment strategies, suitability of data collection tools and procedures and if it was acceptable to those receiving it via surveys. Methods: The study utilized a descriptive pre/post-test intervention design. Participants sought were community-based older adults (aged 65+) living with at least one long-term condition and resident in Canterbury, New Zealand. The data analysis was descriptive, correlation between baseline and follow-up were determined.Results: Participants (n=10) reported that they had learnt from the intervention, had adjusted approaches for healthier living and improved self-managing skills. Nil attrition supported the feasibility and acceptability of the intervention.A high correlation was found between measures taken at baseline and at 3 month post-intervention, suggesting meaningful change could be detected within a modest sample size. Conclusion The LBSP, based on empirical and theoretical knowledge, is feasible for trans-diagnostic groups of community-based older adults living with chronic disease. A larger intervention study is planned to test quality of life and functioning as the main outcomes of the programme promoting self-management and to adequately assess effectiveness

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