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PURPOSE - The purpose of this study is to identify barriers, facilitators, and consequences of obtaining sufficient sleep in adolescents with type 1 diabetes.
METHODS - Semistructured interviews were conducted with 25 adolescents (52% female, mean age = 15.6 years) and 25 caregivers. Interviews were transcribed and coded using Atlas.ti. A thematic analytic approach was used to identify and organize significant patterns of meaning (themes) and interpret themes across the data.
RESULTS - Several barriers were identified, with the most common being the use of electronics before bed and sleep disturbances related to diabetes management. Caregivers described strategies for helping adolescents achieve sufficient sleep, such as enforcing bedtimes and limiting distractions, but many adolescents could not identify facilitators of sleep. Weekday/weekend discrepancies in sleep timing were commonly disclosed.
CONCLUSIONS - This study is the first to examine the perceptions of barriers and facilitators to obtaining sufficient sleep in adolescents with T1D and their caregivers. Results have the potential to inform providers' recommendations regarding sleep, including possible interventions to promote sleep in this high-risk population.
Purpose The purpose of this study was to understand the experience of parenting an adolescent with type 1 diabetes (T1DM), to develop a prototype of an eHealth program for parents of adolescents with T1DM, and to evaluate the prototype content and acceptability from the perspective of parents and health care providers. Methods A multiphase method was used generating both qualitative and quantitative data at multiple time points. There were 27 parents of adolescents aged 12 to 18 years with T1DM and 16 health care providers who participated in semistructured interviews to identify parental challenges; 53 parents and 27 providers evaluated the prototype. Thematic content analysis was used to analyze interview transcripts, and descriptive statistics were used to summarize survey data. Results Challenges experienced by parents of adolescents with T1DM included understanding the developmental and hormonal changes of adolescence that affect diabetes care, feeling tension between adolescent independence and parent control, communicating without nagging or conflict, transferring diabetes care responsibility safely, dealing with feelings of stress and distress, and perceiving a lack of resources for T1DM care and insufficient personal time for self-care. In the prototype evaluation, both parents and providers found content to be relevant and provided feedback to guide the development of the full program. Conclusions Parents of adolescents with T1DM and providers expressed a need for parents to have more support in transitioning diabetes care from parent to adolescent. eHealth programs offer an ideal way to address these needs and ultimately can be linked to electronic medical records improving quality and efficiency of health care in this population.
BACKGROUND - Although the incidence of cervical cancer has been decreasing in the United States over the last decade, Hispanic and African American women have substantially higher rates than Caucasian women. The human papillomavirus (HPV) is a necessary, although insufficient, cause of cervical cancer. In the United States in 2013, only 37.6% of girls 13 to 17 years of age received the recommended 3 doses of a vaccine that is almost 100% efficacious for preventing infection with viruses that are responsible for 70% of cervical cancers. Implementation research has been underutilized in interventions for increasing vaccine uptake. The Consolidated Framework for Implementation Research (CFIR), an approach for designing effective implementation strategies, integrates 5 domains that may include barriers and facilitators of HPV vaccination. These include the innovative practice (Intervention), communities where youth and parents live (Outer Setting), agencies offering vaccination (Inner Setting), health care staff (Providers), and planned execution and evaluation of intervention delivery (Implementation Process).
METHODS - Secondary qualitative analysis of transcripts of interviews with 30 community health care providers was conducted using the CFIR to code potential barriers and facilitators of HPV vaccination implementation.
RESULTS - All CFIR domains except Implementation Process were well represented in providers' statements about challenges and supports for HPV vaccination.
CONCLUSION - A comprehensive implementation framework for promoting HPV vaccination may increase vaccination rates in ethnically diverse communities. This study suggests that the CFIR can be used to guide clinicians in planning implementation of new approaches to increasing HPV vaccine uptake in their settings. Further research is needed to determine whether identifying implementation barriers and facilitators in all 5 CFIR domains as part of developing an intervention contributes to improved HPV vaccination rates.
AIM - To identify factors that may serve as facilitators and barriers to self-management described by adults living with chronic illness by conducting a qualitative metasynthesis.
BACKGROUND - Self-management is an individuals' active management of a chronic illness in collaboration with their family members and clinicians.
DESIGN - Qualitative metasynthesis.
DATA SOURCES - We analysed studies (N = 53) published between January 2000-May 2013 that described factors affecting self-management in chronic illness as reported by adults aged over 18 years with chronic illness.
REVIEW METHODS - Sandelowsi and Barroso approach to qualitative metasynthesis: literature search; quality appraisal; analysis and synthesis of findings.
RESULTS - Collectively, article authors reported on sixteen chronic illnesses, most commonly diabetes (N = 28) and cardiovascular disease (N = 20). Participants included men and women (mean age = 57, range 18-94) from 20 countries representing diverse races and ethnicities. We identified five categories of factors affecting self-management: Personal/Lifestyle Characteristics; Health Status; Resources; Environmental Characteristics; and Health Care System. Factors may interact to affect self-management and may exist on a continuum of positive (facilitator) to negative (barrier).
CONCLUSION - Understanding factors that influence self-management may improve assessment of self-management among adults with chronic illness and may inform interventions tailored to meet individuals' needs and improve health outcomes.
© 2016 John Wiley & Sons Ltd.
BACKGROUND - Early preparation for renal replacement therapy (RRT) is recommended for patients with advanced chronic kidney disease (CKD), yet many patients initiate RRT urgently and/or are inadequately prepared.
METHODS - We conducted audio-recorded, qualitative, directed telephone interviews of nephrology health care providers (n = 10, nephrologists, physician assistants, and nurses) and primary care physicians (PCPs, n = 4) to identify modifiable challenges to optimal RRT preparation to inform future interventions. We recruited providers from public safety-net hospital-based and community-based nephrology and primary care practices. We asked providers open-ended questions to assess their perceived challenges and their views on the role of PCPs and nephrologist-PCP collaboration in patients' RRT preparation. Two independent and trained abstractors coded transcribed audio-recorded interviews and identified major themes.
RESULTS - Nephrology providers identified several factors contributing to patients' suboptimal RRT preparation, including health system resources (e.g., limited time for preparation, referral process delays, and poorly integrated nephrology and primary care), provider skills (e.g., their difficulty explaining CKD to patients), and patient attitudes and cultural differences (e.g., their poor understanding and acceptance of their CKD and its treatment options, their low perceived urgency for RRT preparation; their negative perceptions about RRT, lack of trust, or language differences). PCPs desired more involvement in preparation to ensure RRT transitions could be as "smooth as possible", including providing patients with emotional support, helping patients weigh RRT options, and affirming nephrologist recommendations. Both nephrology providers and PCPs desired improved collaboration, including better information exchange and delineation of roles during the RRT preparation process.
CONCLUSIONS - Nephrology and primary care providers identified health system resources, provider skills, and patient attitudes and cultural differences as challenges to patients' optimal RRT preparation. Interventions to improve these factors may improve patients' preparation and initiation of optimal RRTs.
OBJECTIVES - An important challenge for biomedical informatics researchers is determining the best approach for healthcare providers to use when generating clinical notes in settings where electronic health record (EHR) systems are used. The goal of this qualitative study was to explore healthcare providers' and administrators' perceptions about the purpose of clinical documentation and their own documentation practices.
METHODS - We conducted seven focus groups with a total of 46 subjects composed of healthcare providers and administrators to collect knowledge, perceptions and beliefs about documentation from those who generate and review notes, respectively. Data were analyzed using inductive analysis to probe and classify impressions collected from focus group subjects.
RESULTS - We observed that both healthcare providers and administrators believe that documentation serves five primary domains: clinical, administrative, legal, research, education. These purposes are tied closely to the nature of the clinical note as a document shared by multiple stakeholders, which can be a source of tension for all parties who must use the note. Most providers reported using a combination of methods to complete their notes in a timely fashion without compromising patient care. While all administrators reported relying on computer-based documentation tools to review notes, they expressed a desire for a more efficient method of extracting relevant data.
CONCLUSIONS - Although clinical documentation has utility, and is valued highly by its users, the development and successful adoption of a clinical documentation tool largely depends on its ability to be smoothly integrated into the provider's busy workflow, while allowing the provider to generate a note that communicates effectively and efficiently with multiple stakeholders.
OBJECTIVE - To generate recommendations for framing messages to promote HPV vaccination, specifically for African American adolescents and their parents who have not yet made a decision about the vaccine (the "Undecided" market segment).
METHODS - Focus groups and interviews were conducted with African American girls ages 11-18 (N=34) and their mothers (N=31), broken into market segments based on daughter's vaccination status and mother's intent to vaccinate.
RESULTS - Findings suggested that the HPV vaccine should be presented to "Undecided" mothers and adolescents as a routine vaccine (just like other vaccines) that helps prevent cancer. Within the "Undecided" segment, we identified two sub-segments based on barriers to HPV vaccination and degree of reluctance. The "Undecided/Ready If Offered" segment would easily accept HPV vaccine if given the opportunity, with basic information and a healthcare provider recommendation. The "Undecided/Skeptical" segment would need more in-depth information to allay concerns about vaccine safety, mistrust of drug companies, and recommended age. Some mothers and girls had the erroneous perception that girls do not need the vaccine until they become sexually active. African American adolescents and their mothers overwhelmingly thought campaigns should target both girls and boys for HPV vaccination. In addition, campaigns and messages may need to be tailored for pre-teens (ages 9-12) versus teens (ages 13-18) and their parents.
CONCLUSIONS - Findings pointed to the need to "normalize" the perception of HPV vaccine as just another routine vaccine (e.g., part of pre-teen vaccine package). Findings can inform social marketing campaigns targeting Undecided or ethnically diverse families.
Copyright © 2014 Elsevier Inc. All rights reserved.
Qualitative methods can be particularly useful approaches to use with individuals who are experiencing a rare disease and thus who comprise a small sample (such as children with cancer) and are at points in care that few experience (such as end of life). This data-based methods article describes how findings from a qualitative study were used to guide and shape a pediatric oncology palliative care intervention. Qualitative data can lay a strong foundation for subsequent pilot intervention work by facilitating the development of an underlying study conceptualization, providing recruitment feasibility estimates, helping establish clinically meaningful inclusion criteria, establishing staff acceptability of a research intervention, and providing support for face validity of newly developed interventions. These benefits of preliminary qualitative research are described in the context of this study on legacy-making, which involves reports of children (7-12 years of age) living with advanced cancer and of their parent caregivers.
OBJECTIVE - To determine the association of circulating cell-free hemoglobin with poor clinical outcomes in patients with sepsis and to characterize the potential protective effects of acetaminophen, an inhibitor of hemoprotein-mediated oxidation.
DESIGN - Retrospective observational study.
PATIENTS - A total of 391 critically ill patients with sepsis in multiple ICUs in an academic tertiary care hospital.
INTERVENTIONS - None.
MEASUREMENTS AND MAIN RESULTS - Nonsurvivors had significantly higher plasma cell-free hemoglobin concentrations (median 20mg/dL, interquartile range 10-40) measured on enrollment compared to survivors (10mg/dL, interquartile range 10-30, p = 0.002). After controlling for potential confounders, patients with higher cell-free hemoglobin concentrations were significantly more likely to die in the hospital (odds ratio 1.078, 95% confidence interval 1.012-1.149, p = 0.02). In addition, receiving acetaminophen in the setting of increased cell-free hemoglobin was independently associated with a protective effect against death (odds ratio 0.48, 95% confidence interval 0.25-0.91, p = 0.026) and lower plasma concentrations of the lipid peroxidation product F2-isoprostanes (18.5 pg/mL, interquartile range 9-22.2) compared to no acetaminophen (42 pg/mL, interquartile range 29.7-86, p = 0.009).
CONCLUSIONS - In critically ill patients with sepsis, elevated concentrations of circulating cell-free hemoglobin are independently associated with an increased risk of death. Acetaminophen may exert a protective effect by reducing cell-free hemoglobin-induced oxidative injury.
BACKGROUND - Increasingly, national programs and leaders are looking at interdisciplinary collaborations as essential to future research. Twelve years ago, the National Institutes of Health (NIH) Office of Research on Women's Health (ORWH) developed and implemented the Building Interdisciplinary Research Careers in Women's Health (BIRCWH) K12 program to focus on interdisciplinary mentored career development for junior faculty in women's health research.
METHODS - We applied a mixed-methods approach using an electronic survey and in-person presentations and discussions to understand best practices and lessons learned for interdisciplinary mentoring across BIRCWH K12 program leaders.
RESULTS AND CONCLUSIONS - We received responses from all 29 active BIRCWH programs. Factors associated with success included ensuring sufficient protected time for regular (weekly or biweekly) mentoring; mentors promoting the research independence of the Scholar; a team mentoring approach, including career as well as content mentors; and explicit and clear expectations outlined between the Scholar and mentor. The majority of programs conduct formal evaluations of mentorship, and 79% of programs offer training in mentorship for either Scholars, mentors, or both. This article presents program leaders' best practices, challenges, and lessons learned from mentoring junior faculty who are conducting women's health research, whether basic, clinical, behavioral, translational, or health services research, using an interdisciplinary mentoring approach.