scholarly journals Spanish-Speaking Hispanic Patients’ Information-Sharing Preferences During Hospitalization: An Exploratory Pilot Study (Preprint)

2018 ◽  
Author(s):  
Marge Benham-Hutchins ◽  
Sharon A Brown ◽  
Erin E Donovan ◽  
Henry Guevara ◽  
Alisha H Johnson
Keyword(s):  
Pilot Study ◽  
Information Exchange ◽  
Information Needs ◽  
Medical Information ◽  
Active Role ◽  
Spanish Language ◽  
Self Management ◽  
Future Research ◽  
Spanish Speaking ◽  
Hispanic Patients

BACKGROUND Self-management of chronic conditions, such as cancer or diabetes, requires the coordination of care across multiple care settings. Current patient-centered, hospital-based care initiatives, including bedside nursing handoff and multidisciplinary rounds, often focus on provider information exchange and roles but fall short of the goals of participatory medicine, which recognize the right of patients to partner in their own care and play an active role in self-management. OBJECTIVE This study aimed to elicit Spanish-speaking Hispanic patients’ perspectives on the exchange and sharing of information during hospitalization. METHODS This exploratory pilot study incorporated a qualitative descriptive approach by using Spanish language focus groups, posthospitalization, to determine patient-identified information needs during hospitalization. RESULTS Participants preferred paper-based Spanish language medical information. Doctors and nurses were key information providers and communicated with participants verbally, usually with the assistance of a translator. Participants expressed a desire to be informed about medication and treatments, including side effects and why there were changes in medication during hospitalization. In addition, they expressed interest in knowing about the progress of their condition and when they could expect to go home. Emotional readiness to receive information about their condition and prognosis was identified as an individual barrier to asking questions and seeking additional information about their condition(s). CONCLUSIONS Overall, participants shared positive experiences with providers during hospitalization and the usefulness of self-care instructions. Language was not recognized as a barrier by any of the participants. Nevertheless, future research on the influence of emotional readiness on the timing of medical information is needed.

Diabetes self-management among low-income spanish-speaking patients: A pilot study

2005 ◽  
Vol 29 (3) ◽  
pp. 225-235 ◽  
Author(s):  
Milagros C. Rosal ◽  
Barbara Olendzki ◽  
George W. Reed ◽  
Olga Gumieniak ◽  
Jeffrey Scavron ◽  
...  
Keyword(s):  
Pilot Study ◽  
Low Income ◽  
Self Management ◽  
Spanish Speaking

Self-Management of Hypertension in Hispanic Adults

2011 ◽  
Vol 20 (4) ◽  
pp. 347-365 ◽  
Author(s):  
Amelia Perez
Keyword(s):  
Health Care Professionals ◽  
Intervention Studies ◽  
Self Management ◽  
Future Research ◽  
Management Interventions ◽  
Quantitative Studies ◽  
Hispanic Adults ◽  
Hispanic Patients ◽  
Hypertension Awareness ◽  
And Control

Almost one third of the U.S. population has hypertension. Compared to non-Hispanic Whites, Hispanic individuals have significantly lower levels of hypertension awareness, treatment, and control. This article provides an integrative review of factors that may influence self-management of hypertension among Hispanic adults. A detailed literature search of articles published between 1985 and 2010 was performed. Twelve articles based on quantitative studies ( n = 9) and qualitative studies ( n = 3) were reviewed. Barriers and facilitators to self-management of hypertension were identified. The findings in this review may help health care professionals in recognizing factors that need to be considered in the development of self-management interventions for Hispanic patients with hypertension. Future research is needed to further explore facilitators to self-management, and to implement and evaluate intervention studies aimed at blood pressure management in Hispanics with hypertension.

scholarly journals Rare, epilepsy-related disorder including intellectual disability – A scoping review of caregivers’ identified information needs

2021 ◽  
pp. 174462952110023
Author(s):  
Merete Kristin Tschamper ◽  
Silje Systad
Keyword(s):  
Intellectual Disability ◽  
Scoping Review ◽  
Information Exchange ◽  
Information Needs ◽  
Medical Information ◽  
Specific Information ◽  
Term Care ◽  
Related Disorder ◽  
Formal Caregivers

Persons with rare, epilepsy-related disorders often have intellectual disability and need long-term care. Informal and formal caregivers need information in order to care for the persons in a safe way. Aims: The aims of this review were: (1) to obtain an overview of caregiver-reported information needs; and (2) to investigate if there are information needs that are unique for caregivers of persons with rare epilepsies. Method: We followed the scoping review framework outlined by Arksey and O’Malley and the preferred reporting items outlined by PRISMA. Results: Among the 17 articles that met the inclusion criteria, 5 included caregivers of persons with rare epilepsies. Categories of information needs: (1) Medical information; (2) Information on how to cope with emotional distress; (3) Experiential information from peers; and (4) Interdisciplinary information exchange. The need for disorder-specific information seemed particularly important for caregivers of persons with rare epilepsies. Conclusion: There is a need for further studies, particularly on formal caregivers’ information needs.

scholarly journals Spanish-Speaking Hispanic Patients’ Information-Sharing Preferences During Hospitalization: An Exploratory Pilot Study

10.2196/10782 ◽  
2018 ◽  
Vol 10 (4) ◽  
pp. e10782
Author(s):  
Marge Benham-Hutchins ◽  
Sharon A Brown ◽  
Erin E Donovan ◽  
Henry Guevara ◽  
Alisha H Johnson
Keyword(s):  
Pilot Study ◽  
Information Sharing ◽  
Spanish Speaking ◽  
Hispanic Patients

Satisfaction With Communication Using Remote Face-to-Face Language Interpretation Services With Spanish-Speaking Parents: A Pilot Study

2015 ◽  
Vol 25 (2) ◽  
pp. 70-82
Author(s):  
Nannette Nicholson ◽  
Patti F. Martin ◽  
Karen Muñoz
Keyword(s):  
Hearing Loss ◽  
Pilot Study ◽  
Information Exchange ◽  
Accurate Information ◽  
Exchange Relationship ◽  
Face To Face ◽  
Spanish Speaking ◽  
Clinical Encounters ◽  
Language Interpretation ◽  
Children With Hearing Loss

Effective communication in clinical encounters is dependent upon the exchange of accurate information between clinician and patient and the use of interpersonal skills that foster development of the patient-provider relationship and demonstrate understanding of the patient's social and cultural background. These skills are of critical importance in the diagnosis and management of hearing loss in children of Spanish-speaking families. While the provision of family friendly, culturally sensitive services to families of children with hearing loss can be challenging for audiologists and speech-language pathologists, the quality and satisfaction of these services is widely recognized as the cornerstone of patient satisfaction and improved outcomes. The purpose of this pilot study was to explore patient, audiologist, and interpreter satisfaction of the use of remote face-to-face language interpretation technologies in the context of audiology services. Parent participants rated each session regarding satisfaction with the communication exchange, audiology services, and the interpreting experience. Audiologists rated their satisfaction with the communication exchange, relationship with the parent, and experience with the interpreter. Interpreters rated their satisfaction with the logistics regarding the appointment, information exchange, and experience in working with the audiologist. Audiologists and interpreters were asked to identify what worked well and what challenges needed to be addressed. Data from this pilot study can be used to guide future efforts in providing high quality language interpretation services to Spanish-speaking families of young children who are at risk for or have been diagnosed with hearing loss.

scholarly journals Diabetes self-management in online health communities: an information exchange perspective

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jing Min ◽  
Yan Chen ◽  
Li Wang ◽  
Ting He ◽  
Sha Tang
Keyword(s):  
Information Sharing ◽  
Social Exchange ◽  
Information Exchange ◽  
Medical Information ◽  
Self Management ◽  
Sources Of Information ◽  
Moderating Effects ◽  
Source Information ◽  
Online Health Communities ◽  
Health Communities

Abstract Background Online health communities (OHCs), with a wealth of multi-source information exchange, have provided a convenient way for people with diabetes to actively participate in their self-management and have been widely used. Information exchange assists people with diabetes with health-related decisions to actively engage in their care, and reduce the occurrence of potential complications of diabetes. However, there has been relatively little research on the information exchange behaviors and their effect on health in professional online medical platforms—OHCs. Objective Using a social exchange theory, this study focuses on two sources of information (doctors and people with diabetes) to investigate information exchange behaviors and consequences. Moreover, we also examine moderating effects of information price as patients need to pay prices for consulting with doctors to obtain medical information on OHCs. Methods By using the Python program, a rich dataset contained 22,746 doctor-patient dialogues from December 2017 to December 2018 is collected from the biggest OHC in China. Then the logistic and ordinal regression models are used to get empirical results. Results We found that first information sharing from doctors and other people with diabetes can promote their information sharing behavior. Second, the moderating effects of information price are heterogeneous and change with the exchange participants. Third, rich information exchange supports self-management of people with diabetes and improves their health status. Conclusion This study is among the first that tests the information exchange behavior and consequence for diabetes in OHCs and examines the moderating effects of the information price. The present study produces several insights, which have implications for social exchange, patient behavior, online health communities, and information technology in diabetes self-management literature.

Preferences for research participation among individuals with Lynch syndrome: Findings from the HEROIC Registry.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e19317-e19317
Author(s):  
Robin Beth Dubin ◽  
Allison Burton-Chase
Keyword(s):  
Health Care ◽  
Lynch Syndrome ◽  
Health Care Providers ◽  
Medical Information ◽  
Research Participation ◽  
Active Role ◽  
Future Research ◽  
Medical Procedure ◽  
Care Providers ◽  
Diagnosis Age

e19317 Background: AliveAndKickn, whose mission is to improve the lives of individuals and families affected by Lynch Syndrome (LS) through research and education, maintains the HEROIC Registry. It is the first-of-its-kind, patient-centric, genetic database that enables individuals to take an active role in furthering LS research. Methods: The HEROIC Registry allows patients to contribute medical information and their experiences living with LS and its associated cancers to help researchers develop new treatments, understand the various genetic mutations, and conduct further studies. It also asks individuals about their preferences for participating in different types of research studies. Results: The HEROIC Registry was launched in February of 2016. Potential participants were notified about the availability of the Registry in multiple ways, including social media and patient conferences. As of January 2020, 269 individuals have added their data to the Registry. Of those, 217 have a known LS mutation and were on average 42.5 years old at the time of diagnosis. 38% report having had a diagnosis of colorectal cancer with an average diagnosis age of 43; 23% of female respondents report having had endometrial cancer with an average diagnosis age of 48. 37% are cancer-unaffected. For interest in participating in future research, 69% are somewhat or very likely or definitely want to participate in research that involves a LS treatment, with rates ranging from 62-80% based on the delivery method of the treatment. For non-treatment studies, the percentage of individuals that are somewhat or very likely or definitely want to participate in research that involves community meetings, hospital stays, a medical procedure, wearing a device, or providing information by phone are text are 76%, 46%, 52%, 83%, and 78%, respectively. The percentage of individuals willing to donate a blood sample used to study their DNA is 95%. Conclusions: The HEROIC Registry provides a unique opportunity for health care providers and researchers to partner directly with a patient-advocacy organization for the purpose of improving LS care. It also has the benefit of including a diverse set of patients who are being seen in a variety of health care settings, which can aid in exploring research questions outside of a single institution. However, individuals show clear preferences for the types of research they are likely to participate in, a fact that should be taken into consideration when researchers are planning new studies in this population.

scholarly journals P197 Evaluating the patient experience of the Barts Health MySpA app for axial spondyloarthritis and psoriatic arthritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Rebecca Adshead ◽  
Simon Donnelly ◽  
Maliha Shaikh
Keyword(s):  
Psoriatic Arthritis ◽  
Medical Information ◽  
Axial Spondyloarthritis ◽  
Self Management ◽  
Future Research ◽  
Healthcare Team ◽  
Educational Resource ◽  
Online Questionnaire ◽  
Exercise Programmes ◽  
Patient Opinion

Abstract Background/Aims  In 2018, MySpA App was developed and launched by the Rheumatology team at Whipps Cross Hospital to empower patients with axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) in self-management of their condition. MySpA is an internationally available, free educational App providing instant access to evidence based medical information about axSpA and PsA. It includes a library of exercise videos created by specialist physiotherapists in axSpA, enabling patients and clinicians to build exercise programmes tailored to individual patient needs. Validated outcome measures can be completed by patients throughout the year, with the option of sharing those results with their rheumatology clinicians. Our objective was to evaluate patient opinion and usefulness of MySpA among our patients. Methods  Two years since MySpA was launched at BSR, an online questionnaire was sent to 198 patients with axSpA and PsA from Whipps Cross Rheumatology Service. The questions enquired about awareness of MySpA for download and use amongst patients with managing their condition. Results  Overall response was 36% (n = 72). 61% (n = 44) of the patients responded had downloaded MySpA with 64%(n = 28) of those patients using the app throughout the year. The majority that had not downloaded, were not aware the app existed (70%). All features within the app were used, with the axSpA and PsA Information section and exercise library most popular with comments “I use my exercise plan daily” and “great app.” 53% of patients used the app as an educational resource and 46% used the exercise library tailored to their own needs. The most common reason for not using the app was forgetting (29%). The majority (91%) would recommend MySpA to other patients with axSpA and PsA, with 63% reported MySpA supported them managing their condition. Conclusion  MySpA is well received by patients with axSpA and PsA at Whipps Cross Hospital as a resource where they find specialist support, information and exercise guidance to empower management. It provides a useful virtual tool to assist patients take control of their arthritis and track and monitor their condition and has been particularly useful in this regard during the Covid pandemic. Patients used the facility to complete and share their assessment results and journal logs virtually with their healthcare team. However, continual awareness of MySpA amongst patients and clinicians is required to enable the opportunity to utilise instant specialist support and direction that may help patients manage their condition. The usefulness of the virtual monitoring feature of the app amongst clinicians should be explored in future research. Disclosure  R. Adshead: None. S. Donnelly: None. M. Shaikh: None.

Emergent Literacy in Spanish-Speaking Children With Developmental Language Disorder: Preliminary Findings of Delays in Comprehension- and Code-Related Skills

2020 ◽  
Vol 63 (12) ◽  
pp. 4193-4207
Author(s):  
Amy S. Pratt ◽  
John A. Grinstead ◽  
Rebecca J. McCauley
Keyword(s):  
Emergent Literacy ◽  
Language Disorder ◽  
Literacy Skills ◽  
Future Research ◽  
Developmental Language Disorder ◽  
Writing Ability ◽  
Transparent Orthography ◽  
Spanish Speaking ◽  
Phonological Structure ◽  
Name Writing

Purpose This exploratory study describes the emergent literacy skills of children with developmental language disorder (DLD) who speak Spanish, a language with a simple phonological structure and transparent orthography. We examine differences between children with DLD and their typically developing (TD) peers on a battery of emergent literacy measures. Method Participants included 15 monolingual Spanish-speaking children with DLD (who did not present with cognitive difficulties) and 15 TD controls matched for age, gender, and socioeconomic status, ranging in age from 3;10 to 6;6 (years;months; M age = 4;11). All children completed a battery of comprehension-related emergent literacy tasks (narrative retell, print concept knowledge) and code-related emergent literacy tasks (beginning sound, rhyming awareness, alphabet knowledge, and name-writing ability). Results On average, children with DLD performed significantly worse than TD controls on a battery of comprehension- and code-related emergent literacy measures. On all code-related skills except rhyming, children with DLD were more likely than their TD peers to score “at risk.” Conclusions The results suggest some universality in the effect of DLD on reading development. Difficulties with emergent literacy that are widely documented in English-speaking children with DLD were similarly observed in Spanish-speaking children with DLD. Future research should explore long-term reading outcomes in Spanish for children with DLD.

A Pilot Study of Mobile Telephone Message Interventions with Suicide Attempters in China

Crisis ◽  
2010 ◽  
Vol 31 (2) ◽  
pp. 109-112 ◽  
Author(s):  
Hui Chen ◽  
Brian L. Mishara ◽  
Xiao Xian Liu
Keyword(s):  
Pilot Study ◽  
Effective Means ◽  
Text Message ◽  
Text Messages ◽  
Mobile Telephone ◽  
Future Research ◽  
Quick Method ◽  
Suicide Attempters ◽  
To Receive

Background: In China, where follow-up with hospitalized attempters is generally lacking, there is a great need for inexpensive and effective means of maintaining contact and decreasing recidivism. Aims: Our objective was to test whether mobile telephone message contacts after discharge would be feasible and acceptable to suicide attempters in China. Methods: Fifteen participants were recruited from suicide attempters seen in the Emergency Department in Wuhan, China, to participate in a pilot study to receive mobile telephone messages after discharge. All participants have access to a mobile telephone, and there is no charge for the user to receive text messages. Results: Most participants (12) considered the text message contacts an acceptable and useful form of help and would like to continue to receive them for a longer period of time. Conclusions: This suggests that, as a low-cost and quick method of intervention in areas where more intensive follow-up is not practical or available, telephone messages contacts are accessible, feasible, and acceptable to suicide attempters. We hope that this will inspire future research on regular and long-term message interventions to prevent recidivism in suicide attempters.

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