A Novel Digital Self-management Intervention for Symptoms of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Describing the Process of Development

Sweeney, Louise; Windgassen, Sula; Artom, Micol; Norton, Christine; Fawson, Sophie; Moss‐Morris, Rona

doi:10.2196/33001

Cited by 6 publications

(5 citation statements)

References 76 publications

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“…28 As the potential of sensor capture, computing power, and data availability increases exponentially over time, assessing content validity is crucial to understand how sensor data relate to health status. In fact, sensor data used to infer mental states, such as social withdrawal in depression, relies both on measurement accuracy and understanding of measurement error, and on a theoretical context to make sense of behavior, 84 both lacking in pain.…”

Section: Discussionmentioning

confidence: 99%

Sensing behavior change in chronic pain: A scoping review of sensor technology for use in daily life

Vitali,

Olugbade,

Eccleston

et al. 2024

Pain

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Technology offers possibilities for quantification of behaviors and physiological changes of relevance to chronic pain, using wearable sensors and devices suitable for data collection in daily life contexts. We conducted a scoping review of wearable and passive sensor technologies that sample data of psychological interest in chronic pain, including in social situations. Sixty articles met our criteria from the 2783 citations retrieved from searching. Three-quarters of recruited people were with chronic pain, mostly musculoskeletal, and the remainder with acute or episodic pain; those with chronic pain had a mean age of 43 (few studies sampled adolescents or children) and 60% were women. Thirty-seven studies were performed in laboratory or clinical settings and the remainder in daily life settings. Most used only 1 type of technology, with 76 sensor types overall. The commonest was accelerometry (mainly used in daily life contexts), followed by motion capture (mainly in laboratory settings), with a smaller number collecting autonomic activity, vocal signals, or brain activity. Subjective self-report provided “ground truth” for pain, mood, and other variables, but often at a different timescale from the automatically collected data, and many studies reported weak relationships between technological data and relevant psychological constructs, for instance, between fear of movement and muscle activity. There was relatively little discussion of practical issues: frequency of sampling, missing data for human or technological reasons, and the users' experience, particularly when users did not receive data in any form. We conclude the review with some suggestions for content and process of future studies in this field.

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Section: Discussionmentioning

confidence: 99%

Sensing behavior change in chronic pain: A scoping review of sensor technology for use in daily life

Vitali,

Olugbade,

Eccleston

et al. 2024

Pain

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“…Thus, although recommendations from VHA policy leaders were critical for identifying educational content and optimizing their clarity, the veteran focus groups resulted in adaptations that could ultimately enhance uptake of the intervention among veterans interested in making a change in their long-term use of benzodiazepines. Having both stakeholder groups provide input helped the team to develop a version of EMPOWER-ED that was acceptable and personalized to the needs of the stakeholder groups—all of which are considered key features of self-management websites that promote a positive user experience and clinical outcomes [ 28 ].…”

Section: Discussionmentioning

confidence: 99%

Adapting the Eliminating Medications Through Patient Ownership of End Results Protocol to Promote Benzodiazepine Cessation Among US Military Veterans: Focus Group Study With US Military Veterans and National Veterans Health Administration Leaders

et al. 2022

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Background Long-term dependence on prescribed benzodiazepines is a public health problem. Eliminating Medications Through Patient Ownership of End Results (EMPOWER) is a promising self-management intervention, delivered directly to patients as a printed booklet, that is effective in promoting benzodiazepine reduction and cessation in older adults. EMPOWER has high potential to benefit large health care systems such as the US Veterans Health Administration (VHA), which cares for many veterans who use benzodiazepines for extended periods. Objective We aimed to adapt the original EMPOWER booklet materials for electronic delivery and for use among US military veterans receiving VHA care who were long-term benzodiazepine users. Methods We used elements of Analysis, Design, Development, Implementation, and Evaluation, a framework commonly used in the field of instructional design, to guide a qualitative approach to iteratively adapting EMPOWER Electronic Delivery (EMPOWER-ED). We conducted 3 waves of focus groups with the same 2 groups of VHA stakeholders. Stakeholders were VHA-enrolled veterans (n=16) with medical chart evidence of long-term benzodiazepine use and national VHA leaders (n=7) with expertise in setting VHA policy for prescription benzodiazepine use and developing electronically delivered educational tools for veterans. Qualitative data collected from each wave of focus groups were analyzed using template analysis. Results Themes that emerged from the initial focus groups included veterans’ anxiety about self-tapering from benzodiazepines and prior negative experiences attempting to self-taper without support. Participants also provided feedback on the protocol’s look and feel, educational content, the tapering protocol, and website functionality; for example, feedback from policy leaders included listing, on the cover page, the most commonly prescribed benzodiazepines to ensure that veterans were aware of medications that qualify for self-taper using the EMPOWER-ED protocol. Both groups of stakeholders identified the importance of having access to supportive resources to help veterans manage sleep and anxiety in the absence of taking benzodiazepines. Both groups also emphasized the importance of ensuring that the self-taper could be personalized and that the taper instructions were clear. The policy leaders emphasized the importance of encouraging veterans to notify their provider of their decision to self-taper to help facilitate provider assistance, if needed, with the taper process and to help prevent medication stockpiling. Conclusions EMPOWER-ED is the first direct-to-patient electronically delivered protocol designed to help US military veterans self-taper from long-term benzodiazepine use. We used the Analysis, Design, Development, Implementation, and Evaluation framework to guide the successful adaption of the original EMPOWER booklet for use with this population and for electronic delivery. The next step in this line of research is to evaluate EMPOWER-ED in a randomized controlled trial.

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“…Logic models are graphic depictions of the relationships between resources, activities, outcomes, and impacts of a program or a system. They have been used in a variety of settings, for example, to inform the development of interventions such as a rehabilitation service for youth with concussion [ 7 , 8 ], mobile health support for physical activity in people with spinal cord injuries [ 9 ], and digital self-management in inflammatory bowel disease [ 10 ]. They have been used to understand how digital health interventions for self-management might be used to facilitate effective behavior change [ 11 ], how to design a plan to transform a health care system [ 12 ], and to capture complexities in systematic and scoping reviews [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

Building Culturally Centered System Dynamics Logic Models for the Brown Buttabean Motivation Organization: Protocol for a Systems Science Approach

Savila¹,

Harding²,

Bagg³

et al. 2023

JMIR Res Protoc

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Background Brown Buttabean Motivation (BBM) is an organization providing support for Pacific people and Indigenous Māori to manage their weight, mainly through community-based exercise sessions and social support. It was started by DL, a man of Samoan and Māori descent, following his personal weight loss journey from a peak weight of 210 kg to less than half that amount. DL is a charismatic leader with a high media profile who is successful in soliciting donations from corporations in money and kindness. Over time, BBM’s activities have evolved to include healthy eating, food parcel provision, and other components of healthy living. A co-design team of university researchers and BBM staff are evaluating various components of the program and organization. Objective The purpose of this study is to build culturally centered system dynamics logic models to serve as the agreed theories of change for BBM and provide a basis for its ongoing effectiveness, sustainability, and continuous quality improvements. Methods A systems science approach will clarify the purpose of BBM and identify the systemic processes needed to effectively and sustainably achieve the study’s purpose. Cognitive mapping interviews with key stakeholders will produce maps of their conceptions of BBM’s goals and related cause-and-effect processes. The themes arising from the analysis of these maps will provide the initial indicators of change to inform the questions for 2 series of group model building workshops. In these workshops, 2 groups (BBM staff and BBM members) will build qualitative systems models (casual loop diagrams), identifying feedback loops in the structures and processes of the BBM system that will enhance the program’s effectiveness, sustainability, and quality improvement. The Pacific and Māori team members will ensure that workshop content, processes, and outputs are grounded in cultural approaches appropriate for the BBM community, with several Pacific and Māori frameworks informing the methods. These include the Samoan fa’afaletui research framework, which requires different perspectives to be woven together to create new knowledge, and kaupapa Māori–aligned research approaches, which create a culturally safe space to conduct research by, with, and for Māori. The Pacific fonofale and Māori te whare tapa whā holistic frameworks for interpreting people’s dimensions of health and well-being will also inform this study. Results Systems logic models will inform BBM’s future developments as a sustainable organization and support its growth and development beyond its high dependence on DL’s charismatic leadership. Conclusions This study will adopt a novel and innovative approach to co-designing culturally centered system dynamics logic models for BBM by using systems science methods embedded within Pacific and Māori worldviews and weaving together a number of frameworks and methodologies. These will form the theories of change to enhance BBM’s effectiveness, sustainability, and continuous improvement. Trial Registration Australian New Zealand Clinical Trial Registry ACTRN 12621-00093-1875; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382320 International Registered Report Identifier (IRRID) PRR1-10.2196/44229

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A Novel Digital Self-management Intervention for Symptoms of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Describing the Process of Development

Cited by 6 publications

References 76 publications

Sensing behavior change in chronic pain: A scoping review of sensor technology for use in daily life

Sensing behavior change in chronic pain: A scoping review of sensor technology for use in daily life

Adapting the Eliminating Medications Through Patient Ownership of End Results Protocol to Promote Benzodiazepine Cessation Among US Military Veterans: Focus Group Study With US Military Veterans and National Veterans Health Administration Leaders

Building Culturally Centered System Dynamics Logic Models for the Brown Buttabean Motivation Organization: Protocol for a Systems Science Approach

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