Challenges and Strategies: Nationwide Data Collection for an Internet-based Guided Relaxation Intervention in Sickle Cell Disease.

The pain of sickle cell disease (SCD) is often stressful and increases the need for opioids. Relaxation and/or distraction interventions may reduce stress, pain, and opioid use in outpatients with SCD. There is limited information regarding challenges and strategies for successful recruitment, reten...

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Publicado en:Pain Management Nursing Vol. 26; no. 4; pp. 441 - 449
Autores principales: Ali, Muntaha, Jonassaint, Halle, Bedrosian, Aleah, Yao, Yingwei, Mandernach, Molly W., Fedele, David, Lucero, Robert J., Corless, Inge, Dyal, Brenda W., Belkin, Mary H, Bastidas Mora, Gabriela N., Wilkie, Diana J., Ezenwa, Miriam O.
Formato: research Journal Article
Publicado: W B Saunders Aug2025
Acceso en línea:Ver este registro en EBSCOhost
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        10.1016/j.pmn.2025.03.003
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        atl: Challenges and Strategies: Nationwide Data Collection for an Internet-based Guided Relaxation Intervention in Sickle Cell Disease.
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        au:
          Ali, Muntaha
          Jonassaint, Halle
          Bedrosian, Aleah
          Yao, Yingwei
          Mandernach, Molly W.
          Fedele, David
          Lucero, Robert J.
          Corless, Inge
          Dyal, Brenda W.
          Belkin, Mary H
          Bastidas Mora, Gabriela N.
          Wilkie, Diana J.
          Ezenwa, Miriam O.
        affil: Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL
      sug:
        subj:
          Anemia, Sickle Cell Therapy
          Internet-Based Intervention
          Relaxation Techniques
          Treatment Outcomes
          Strategic Planning
          Data Collection Methods
          Research Subject Recruitment
          Research Subject Retention
          Pain Management Methods
          Human
          Male
          Female
          Adolescence
          Adult
          Middle Age
          Aged
          Qualitative Studies
          African Americans
          Collaboration
          Patient-Reported Outcomes
          Time Factors
          Descriptive Statistics
          Adolescent: 13-18 years
          Adult: 19-44 years
          Middle Aged: 45-64 years
          Aged: 65+ years
          Male
          Female
      ab: The pain of sickle cell disease (SCD) is often stressful and increases the need for opioids. Relaxation and/or distraction interventions may reduce stress, pain, and opioid use in outpatients with SCD. There is limited information regarding challenges and strategies for successful recruitment, retention, and data collection for a relaxation and/or distraction study in this population. The authors examined recruitment, retention, and data collection challenges for the participants in a study of an internet-based guided relaxation intervention to devise strategies to address them. Qualitative data from an ongoing 6-month randomized controlled trial of a relaxation intervention was used. Participants (N = 122) had a mean age of 33.4 ± 10.6 years (range = 18-65), were mostly African American (93%) and female (68%), and were enrolled between March 2021 and May 2024 in collaboration with SCD clinics and communities. Participants completed baseline measures and were randomized to control or experimental groups. Research specialists documented all participant-reported challenges. Of 122 participants who completed the study, 65 (53%) reported 126 occurrences of challenges: 15 (12%) reported internet issues, 27 (21%) reported technical difficulties with the web-based program or Galaxy tablet, 4 (3%) reported problems using medication devices, 21 (17%) reported trouble adhering to specific data entry time windows, 39 (31%) had missing data points due to hospitalization, and 20 (16%) reported overwhelming pain at home. Several targeted strategies were used to overcome these challenges. Findings provide insights into the challenges encountered in study recruitment, retention, and data collection when assessing adult outpatients with SCD. Addressing these challenges through targeted strategies, including practical team training, active engagement with participants, and efforts to add recruitment sites, can enhance recruitment, retention, and data collection in this population.
      pubtype: Academic Journal
      doctype:
        research
        Journal Article
      ougenre: Article
    language: English
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