Acceptability and feasibility of an app-based just-in-time-adaptive self-management intervention for care partners: Protocol for the CareQOL pilot trial (Preprint)

2021 ◽  
Author(s):  
Noelle Carlozzi ◽  
Sung Won Choi ◽  
Zhenke Wu ◽  
Jennifer A. Miner ◽  
Angela K. Lyden ◽  
...  
Keyword(s):  
Data Collection ◽  
Care Recipient ◽  
Sensor Data ◽  
Self Management ◽  
Just In Time ◽  
Personalized Feedback ◽  
Management Interventions ◽  
Care Partners ◽  
Data Feedback ◽  
Cord Injury

BACKGROUND Care partners (i.e., informal family caregivers) of individuals with health problems are faced with considerable physical and emotional stress, often with substantial negative impact on the health-related quality of life (HRQOL) of both the care partner and care-recipient. Given that these individuals are often overwhelmed by their caregiving responsibilities, low burden self-management interventions are needed to support caregivers to ensure better patient outcomes. OBJECTIVE The primary objective of this study is to describe an intensive data collection protocol that involves the delivery of a personalized just-in-time adaptive intervention (JITAI) that incorporates passive mobile sensor data feedback (sleep and activity data from a Fitbit®), and real-time self-reporting of HRQOL via a study specific app called CareQOL to provide personalized feedback via app alert. METHODS Participants from three diverse care partner groups will be enrolled (care partners of persons with spinal cord injury [SCI]; care partners of persons with Huntington disease [HD]; and care partners of persons with hematopoietic cell transplantation [HCT]). Participants are randomized either to a control group, where they will wear the Fitbit® and provide daily reports of HRQOL over a three-month (90 day) period (without the personalized feedback), or the JITAI group, where they will wear the Fitbit®, provide daily reports of HRQOL and receive personalized pushes for 3 months. At the end of the study, participants complete a feasibility and acceptability questionnaire, and metrics regarding adherence and attrition will be calculated. RESULTS This trial opened for recruitment in November 2020. Data collection was completed in June 2021, and the primary results are expected to be published in winter 2021. CONCLUSIONS This trial will determine the feasibility and acceptability of an intensive app-based intervention in three distinct caregiver groups: care partners for persons with a chronic condition that was caused by a traumatic event (i.e., SCI); 2) care partners for persons with a progressive, fatal neurodegenerative disease (i.e., HD); and 3) care partners for persons with an episodic cancer condition that requires intense, prolonged inpatient and outpatient treatment (persons with HCT). CLINICALTRIAL ClinicalTrial.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591

scholarly journals Self-management interventions for skin care in people with a spinal cord injury: part 1—a systematic review of intervention content and effectiveness

Spinal Cord ◽  
2018 ◽  
Vol 56 (9) ◽  
pp. 823-836 ◽  
Author(s):  
Justine S. Baron ◽  
Katrina J. Sullivan ◽  
Jillian M. Swaine ◽  
Arlene Aspinall ◽  
Susan Jaglal ◽  
...  
Keyword(s):  
Systematic Review ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Skin Care ◽  
Self Management ◽  
Management Interventions ◽  
Cord Injury ◽  
Intervention Content

scholarly journals Self-management interventions for skin care in people with a spinal cord injury: part 2—a systematic review of use of theory and quality of intervention reporting

Spinal Cord ◽  
2018 ◽  
Vol 56 (9) ◽  
pp. 837-846 ◽  
Author(s):  
Justine S. Baron ◽  
Katrina J. Sullivan ◽  
Jillian M. Swaine ◽  
Arlene Aspinall ◽  
Susan Jaglal ◽  
...  
Keyword(s):  
Systematic Review ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Skin Care ◽  
Self Management ◽  
Management Interventions ◽  
Cord Injury ◽  
Intervention Reporting

scholarly journals A Scoping Review of Self-Management Interventions Following Spinal Cord Injury

2020 ◽  
Vol 26 (1) ◽  
pp. 36-63
Author(s):  
Amanda McIntyre ◽  
Stephanie L. Marrocco ◽  
Samantha A. McRae ◽  
Lindsay Sleeth ◽  
Sander Hitzig ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Scoping Review ◽  
Symptom Management ◽  
Self Management ◽  
Broad Perspective ◽  
Specific Symptom ◽  
Management Interventions ◽  
Management Concepts ◽  
Cord Injury

Objective: To conduct a scoping review to identify what components of self-management are embedded in self-management interventions for spinal cord injury (SCI). Methods: In accordance with the approach and stages outlined by Arksey and O'Malley (2005), a comprehensive literature search was conducted using five databases. Study characteristics were extracted from included articles, and intervention descriptions were coded using Practical Reviews in Self-Management Support (PRISMS) (Pearce et al, 2016), Barlow et al (2002), and Lorig and Holman's (2003) taxonomy. Results: A total of 112 studies were included representing 102 unique self-management programs. The majority of the programs took an individual approach (52.0%) as opposed to a group (27.4%) or mixed approach (17.6%). While most of the programs covered general information, some provided specific symptom management. Peers were the most common tutor delivering the program material. The most common Barlow components included symptom management ( n = 44; 43.1%), information about condition/treatment ( n = 34; 33.3%), and coping ( n = 33; 32.4%). The most common PRISMS components were information about condition and management ( n = 85; 83.3%), training/rehearsal for psychological strategies ( n = 52; 51.0%), and lifestyle advice and support ( n = 52; 51.0%). The most common Lorig components were taking action ( n = 62; 60.8%), resource utilization ( n = 57; 55.9%), and self-tailoring ( n = 55; 53.9%). Conclusion: Applying self-management concepts to complex conditions such as SCI is only in the earliest stages of development. Despite having studied the topic from a broad perspective, this review reflects an ongoing program of research that links to an initiative to continue refining and testing self-management interventions in SCI.

Identifying the Predictors of Self-Management Behaviors in Patients with Diabetes Based on Ecological Approach: A Systematic Review

2020 ◽  
Vol 16 ◽  
Author(s):  
Mahnaz Davari ◽  
Hamed Rezakhani Moghaddam ◽  
Aghil Habibi Soola
Keyword(s):  
Scientific Information ◽  
The Self ◽  
Self Management ◽  
Ecological Approach ◽  
Selection Strategy ◽  
Diabetic Patients ◽  
Personal Factors ◽  
Management Interventions ◽  
Number Of Patients ◽  
Management Behaviors

Background: Recognizing and promoting the factors that affect the self-management behaviors of diabetes leads to a reduction in the number of patients and an improvement in the quality of care. The ecological approach focuses on the nature of people's interactions with their physical and socio-cultural environments. Objective: The purpose of this study was to identify the predictors of self-management behaviors with a comprehensive approach in these patients. Methods: The Keywords were investigated in the relevant national and international databases, including PubMed, Google Scholar, Science Direct, Scopus, and Scientific Information Database, Magiran, and Iran Medex to obtain the articles published from 2009 to 2019. The search and article selection strategy was developed based on the Prisma checklist and was carried out in three steps. Results: Most studies have shown that personal factors had the highest prediction power for the self-management of diabetes. Then, the interpersonal factors, society and policy-making factors, and group and organization factors were most frequently reported predictors of self-management behaviors in diabetic patients. Conclusion: Self-management of diabetes is necessary for controlling it because 95% of care is done by the patient. When designing self-management interventions, factors based on the individual level that increasing self-management behaviors should be taken into account.

Adolescent Trials Network for HIV-AIDS Scale It Up Program: Protocol for a Rational and Overview (Preprint)

2018 ◽  
Author(s):  
Sylvie Naar ◽  
Jeffrey T Parsons ◽  
Bonita F Stanton
Keyword(s):  
Implementation Science ◽  
Large Body ◽  
Hiv Infections ◽  
Self Management ◽  
Management Interventions ◽  
Hiv Research ◽  
The Individual ◽  
Youth Living With Hiv ◽  
Living With Hiv ◽  
Hiv Aids

BACKGROUND The past 30 years have witnessed such significant progress in the prevention and treatment of HIV/AIDS that an AIDS-free generation and the end to the global AIDS epidemic are ambitious, but achievable, national and global goals. Despite growing optimism, globally, youth living with HIV are markedly less likely to receive antiretroviral therapy than adults (23% vs 38%). Furthermore, marked health disparities exist regarding HIV infection risk, with young men of color who have sex with men disproportionately affected. A large body of research has identified highly impactful facilitators of and barriers to behavior change. Several efficacious interventions have been created that decrease the rate of new HIV infections among youth and reduce morbidity among youth living with HIV. However, full benefits that should be possible based on the tools and interventions currently available are yet to be realized in youth, in large part, because efficacious interventions have not been implemented in real-world settings. Scale It Up (SIU) primarily aims to assemble research teams that will ultimately bring to practice evidence-based interventions that positively impact the youth HIV prevention and care cascades, and in turn, advance the fields of implementation science and self-management science. OBJECTIVE This paper aims to describe the structure of the U19-SIU and the effectiveness-implementation hybrid trials, as well as other center-wide protocols and initiatives, implemented within SIU. METHODS SIU will achieve its aims through 4 individual primary protocols, 2 center-wide protocols, and 3 cross-project initiatives. RESULTS SIU was funded by National Institute for Child Health and Human Development (U19HD089875) and began in October 2016. As of November 2018, 6 SIU protocols have launched at least the first phase of work (ATN 144 SMART: Sequential Multiple Assignment Randomized Trial; ATN 145 YMHP: Young Men’s Health Project; ATN 146 TMI: Tailored Motivational Interviewing Intervention; ATN 153 EPIS: Exploration, Preparation, Implementation, Sustainment model; ATN 154 CM: Cascade Monitoring; ATN 156 We Test: Couples' Communication and HIV Testing). Further details can be found in the individual protocol papers. CONCLUSIONS To date, the youth HIV research portfolio has not adequately advanced the important care area of self-management. SIU protocols and initiatives address this broad issue by focusing on evaluating the effectiveness and implementation of self-management interventions. SIU is highly innovative for 5 primary reasons: (1) our research framework expands the application of “self-management”; (2) the 4 primary protocols utilize innovative hybrid designs; (3) our Analytic Core will conduct cost-effectiveness analyses of each intervention; (4) across all 4 primary protocols, our Implementation Science Core will apply implementation scales designed to assess inner and outer context factors; and (5) we shall advance understanding of the dynamics between provider and patient through analysis of recorded interactions. INTERNATIONAL REGISTERED REPOR DERR1-10.2196/11204

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