GLORIA

GEOMAR Library Ocean Research Information Access

Your email was sent successfully. Check your inbox.

An error occurred while sending the email. Please try again.

Proceed reservation?

Export
  • 1
    In: Pediatric Blood & Cancer, Wiley, Vol. 69, No. 12 ( 2022-12)
    Abstract: Individuals with sickle cell disease (SCD) experience systemic barriers in accessing high‐quality care. Research suggests that patient/family–provider relationships are an important indicator of healthcare quality and can influence disease self‐management and outcomes. The Patient Centered Communication (PCC) framework holds that patient/family‐centered communication (e.g., eliciting, understanding, and validating patients’ perspectives within their unique psychosocial contexts) contributes to improved family–provider relationships, as well as self‐efficacy for disease management, adherence, and health outcomes. While the PCC framework has been useful in guiding the evaluation of patient/family–provider communication in other pediatric populations, it has not yet been applied in the context of pediatric SCD. This study aimed to use this framework to examine patient and family perceptions of communication with pediatric SCD healthcare providers. Procedure Total 17 caregivers (82% mothers, 94% Black/African American) and eight patients (62% female, aged 13–19 years, M  = 16.50) completed semi‐structured interviews. The PCC framework informed the development of a preliminary codebook. Thematic content analysis summarized family perspectives regarding communication with providers. Results For youth with SCD and their caregivers, specific themes related to family‐centered communication included: reducing patient/family distress, supporting disease self‐management efforts, facilitating information exchange and decision‐making, and fostering positive and trusting relationships with providers. Conclusions This study helps to address gaps in the literature related to patient/family–provider communication within pediatric SCD. Results underscore the importance of patient‐ and family‐centered communication across pediatric SCD care. These findings can inform future research and clinical care initiatives to improve patient/family–provider interactions and health outcomes for this underserved population.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2130978-4
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 2
    Online Resource
    Online Resource
    Wiley ; 2013
    In:  Design Management Review Vol. 24, No. 2 ( 2013-06), p. 48-53
    In: Design Management Review, Wiley, Vol. 24, No. 2 ( 2013-06), p. 48-53
    Type of Medium: Online Resource
    ISSN: 1557-0614
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2013
    detail.hit.zdb_id: 2388476-9
    SSG: 3,2
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 3
    Online Resource
    Online Resource
    Wiley ; 2015
    In:  Pediatric Blood & Cancer Vol. 62, No. 2 ( 2015-02), p. 184-185
    In: Pediatric Blood & Cancer, Wiley, Vol. 62, No. 2 ( 2015-02), p. 184-185
    Abstract: Clinical trials have demonstrated hydroxyurea's efficacy in improving health outcomes for children with sickle cell anemia (SCA) who have medical complications. New NHLBI clinical guidelines will recommend offering hydroxyurea to young patients regardless of clinical severity. Shared decision making may be an effective approach for implementing this practice change. Decision aids that help patients/parents feel empowered to make this decision and help providers feel comfortable in discussing hydroxyurea as a preventive treatment may facilitate shared discussions between families and providers. We recommend six strategies providers can use to facilitate these discussions while decision aids and tools are being developed. Pediatr Blood Cancer 2015;62:184–185. © 2014 Wiley Periodicals, Inc.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2015
    detail.hit.zdb_id: 2130978-4
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 4
    In: Pediatric Blood & Cancer, Wiley, Vol. 64, No. 1 ( 2017-01), p. 139-145
    Abstract: Adolescents and young adults (AYAs) with sickle cell disease (SCD) are a vulnerable population with high risk of morbidity that could be decreased with effective self‐management. Previous research suggests that mobile applications (apps) may facilitate AYA engagement in health‐promoting behaviors. The objectives of this study were: (i) describe Internet access and use in AYA with SCD; (ii) identify barriers for self‐management in this population; (iii) collaborate with AYA to co‐design a mobile app that would minimize barriers; and (iv) evaluate the feasibility and acceptability of the app. Procedure In phase 1, 46 AYAs with SCD 16–24 years of age completed a survey of Internet access and use. During phase 2, 19 AYAs with SCD (average age 20 ± 2.5 years) and eight healthcare providers participated in interviews to identify barriers and co‐design sessions to develop the app. In phase 3, five AYAs with SCD completed app feasibility and usability testing. Results AYAs with SCD had daily Internet access (69%) using their computers (84%) or mobile phones (70%). Participants went online for health information (71%) and preferred Web sites with interactive/social features (83%). Barriers to self‐management included failing to believe that their health would suffer, lack of tailored self‐management support, lack of a mechanism to visualize self‐management progress, and limited opportunities for peer interaction around self‐management. The prototype app (iManage) was rated as highly feasible and beneficial. Conclusions A mobile app prototype co‐designed by AYAs with SCD may be a useful tool for engaging them in self‐management strategies designed to improve health.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2017
    detail.hit.zdb_id: 2130978-4
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 5
    In: Pediatric Blood & Cancer, Wiley, Vol. 67, No. 10 ( 2020-10)
    Abstract: Sickle cell disease (SCD) is associated with significant medical challenges that often worsen in adolescence when caregivers are beginning to transfer responsibility for disease management. Behavioral activation (BA) is an important precedent to improvements in self‐management and ultimately health outcomes; however, few interventions targeting BA have been developed for the SCD population. The goal of the present study was to evaluate a technology‐enhanced self‐management intervention for adolescents and young adults (AYA) with SCD targeting BA domains (ie, disease knowledge, self‐efficacy, motivation, and self‐management skills). Design/methods Participants were randomized to one of two study arms. SCThrive participants (N = 26) completed six weekly group sessions, an in‐person booster session, and used a companion app (iManage) to record symptoms, progress on goals, and connect with other group members. Each SCHealthEd participant (N = 27) received six weekly phone calls on SCD‐related and general health education topics. All AYA completed questionnaires assessing BA at baseline and posttreatment. Results Separate mixed ANOVA analyses to assess for the effects of group (SCThrive/SCHealthEd), time (baseline/posttreatment), and group × time interaction indicated that there was a clinically meaningful improvement (8‐point change) in self‐efficacy, with a medium effect size, P  = .09, η 2  = .06, and there was statistically significant improvement in one self‐management skill (tracking health), P  = .001, d  = .71, among SCThrive participants. Conclusions The results support the potential for a self‐management intervention to improve self‐efficacy in AYA with SCD. Health care providers are encouraged to target BA skills to support self‐management of AYA with SCD.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2020
    detail.hit.zdb_id: 2130978-4
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 6
    In: The Clinical Teacher, Wiley, Vol. 20, No. 3 ( 2023-06)
    Abstract: Assessing trainees' skills via workplace‐based assessments is challenging given the lack of psychometrically valid instruments. Our team previously developed an observation instrument to assess residents' competencies in behavioral health anticipatory guidance (BHAG) and motivational interviewing (MI) though its reliable usage required expert raters (e.g., paediatric psychologists). Our purpose was to establish validity evidence for a modified tool for clinicians. Approach This study utilised data from a prior educational trial of a virtual reality (VR)‐based behavioural health curriculum for paediatric residents. First, group interviews were conducted with clinicians to modify the expert instrument. Next, recorded VR simulations ( n  = 10) were scored to assess interrater reliability between clinicians. Finally, a physician used the tool to assess its ability to discriminate between residents' skill levels ( n  = 55). Evaluation Modifications during group interviews included a change from frequency counts for items related to MI to the binary outcome of present/absent and the addition of an entrustment item. On interrater‐reliability testing, the clinician tool demonstrated mostly substantial or near perfect agreement for items related to BHAG. MI items demonstrated a range of agreement. Using 55 recorded VR simulations, the clinician tool discriminated between trained versus untrained residents in BHAG skills (p = 0.002) and level of entrustment (p = 0.001). Differences between groups in MI adherence was not statistically significant (p = 0.095) as it was on the expert instrument. Implications VR demonstrated potential as a novel approach for obtaining validity evidence for tool development to support workplace‐based assessments. Further work assessing usage of the clinician tool in real‐world settings is warranted.
    Type of Medium: Online Resource
    ISSN: 1743-4971 , 1743-498X
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2174501-8
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
  • 7
    Online Resource
    Online Resource
    Wiley ; 2017
    In:  Pediatric Blood & Cancer Vol. 64, No. 5 ( 2017-05)
    In: Pediatric Blood & Cancer, Wiley, Vol. 64, No. 5 ( 2017-05)
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2017
    detail.hit.zdb_id: 2130978-4
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
Close ⊗
This website uses cookies and the analysis tool Matomo. More information can be found here...