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The Online Support Group as a Community: A Thematic Content Analysis of an Online Support Group for Idiopathic Subglottic Stenosis.
Haik D, Kashanchi K, Tajran S, Heilbronn C, Anderson C, Francis DO, Gelbard A, Verma SP
(2019) Ann Otol Rhinol Laryngol 128: 293-299
MeSH Terms: Access to Information, Disease Management, Emotions, Female, Global Health, Humans, Information Dissemination, Internet, Laryngostenosis, Male, Psychosocial Support Systems, Self-Help Groups
Show Abstract · Added July 30, 2020
OBJECTIVE: - Idiopathic subglottic stenosis (iSGS) is a rare disease with few local resources for individuals to use. With the explosive growth of online social networking, platforms such as Facebook possess compelling potential to facilitate user-driven sharing of health information and peer support. This study was performed to better understand the content shared in a busy online community for individuals with iSGS.
METHODS: - The largest online community (OC) for individuals with iSGS, Living With Idiopathic Subglottic Stenosis (LwiSGS), was examined. A thematic content analysis of the communications shared in February of 2018 was performed. A conventional qualitative analysis model was employed to analyze aggregated data. The data were then codified.
RESULTS: - Analysis demonstrated that communications primarily encompassed three major thematic elements: (1) information sharing; (2) emotional support, expression, and experience sharing; and (3) community building. Positively toned posts grossly overshadowed negatively toned posts by almost a factor of 3. A significant portion of group members requested information from their peers, suggesting a high level of trust toward the resources provided in this group, even those involving a surgical procedure or medication.
CONCLUSION: - LwiSGS is a forum for patients with a rare chronic condition to share informational resources, personal experiences, and emotional support, as well as a community with their peers. These data suggest that LwiSGS could be a powerful resource for individuals with iSGS to share information, personal experiences, or emotional support.
0 Communities
1 Members
0 Resources
MeSH Terms
Technology preferences among caregivers of children with hydrocephalus.
Naftel RP, Safiano NA, Falola MI, Shannon CN, Wellons JC, Johnston JM
(2013) J Neurosurg Pediatr 11: 26-36
MeSH Terms: Adult, Biomedical Technology, Caregivers, Child, Data Collection, Female, Health Care Surveys, Humans, Hydrocephalus, Information Seeking Behavior, Internet, Male, Patient Education as Topic, Patient Preference, Population, Prospective Studies, Self-Help Groups, Social Media, Socioeconomic Factors
Show Abstract · Added March 20, 2014
OBJECT - The Internet and social media are powerful disseminators of medical information, providing new portals for patient care. The authors of this study evaluated current technology hardware, Internet, and social media use and their socioeconomic relationships among caregivers of children with hydrocephalus.
METHODS - A written survey was completed in the neurosurgical clinics at the University of Alabama at Birmingham by 300 parents of children with shunted hydrocephalus between October 26, 2010, and July 26, 2011.
RESULTS - Computer use (94.6%), Internet use (91.7%), smartphone use (56.9%), and Internet research on hydrocephalus (81.9%) were prevalent. However, for each of these four utilizations there was significantly lower access by caregivers of minority races (p = 0.04, 0.03, 0.002, and < 0.0001, respectively), lower income (p = 0.02, 0.01, < 0.0001, and < 0.0001, respectively), and lower level of education (p = 0.001, 0.002, < 0.0001, and 0.001, respectively). Personal use of social media was prevalent (95.1% of all Internet users) with use being more prevalent among less-educated than higher-educated caregivers (p = 0.017). Hydrocephalus-related social media use (59.5% of Internet users) was not associated with socioeconomic factors. For hydrocephalus education on the Internet, caregivers chose information websites such as Wikipedia or the Hydrocephalus Association as preferred platforms; these preferences were followed by use of social media websites. Facebook and YouTube were the preferred social media platforms for personal and hydrocephalus-related use. Parents indicate moderate skepticism about the trustworthiness of the Internet; only 21.7% always trust the online sources. Most parents (89.8%) say that they would visit neurosurgeon-recommended websites. Of Internet-using caregivers, 28.6% use the Internet or social media to find hydrocephalus support groups, and 34.8% have used the Internet to communicate with other caregivers who have children with similar conditions.
CONCLUSIONS - Technology hardware, the Internet, and social media are widely used with some skepticism by parents of children with shunted hydrocephalus. Caregivers are interested in physician-recommended Internet resources. Socioeconomic factors including race, income, and level of education reveal a disparity in access to some of these resources, although all groups have relatively high use. Unlike typical technology use, social media use is breaking down the digital divide among ethnic and socioeconomic groups.
0 Communities
1 Members
0 Resources
19 MeSH Terms
Self-management problem solving for adolescents with type 1 diabetes: intervention processes associated with an Internet program.
Mulvaney SA, Rothman RL, Osborn CY, Lybarger C, Dietrich MS, Wallston KA
(2011) Patient Educ Couns 85: 140-2
MeSH Terms: Adaptation, Psychological, Adolescent, Adolescent Behavior, Adolescent Health Services, Diabetes Mellitus, Type 1, Female, Glycated Hemoglobin A, Humans, Internet, Male, Patient Compliance, Patient Education as Topic, Problem Solving, Psychology, Adolescent, Self Care, Self-Help Groups
Show Abstract · Added December 10, 2013
OBJECTIVE - Describe intervention processes associated with an Internet self-management problem solving program for adolescents with type 1 diabetes, and relate participant characteristics to program use.
METHODS - Forty-one adolescents with type 1 diabetes, aged 13-17, participated in an Internet intervention.
RESULTS - Participants reported psychosocial self-management barriers related to social issues (45%), time pressures (22%), and emotions (25%). Most adolescents (76%) completed the two guided problem solving cycles, and most (97%) problems were appropriate and specific to diabetes. Of the 61 diabetes problems reported, 92% were mostly or completely solved. Baseline hemoglobin A1c, diabetes duration, and age were not related to online activities, however females posted more often to the forum (U=130.0, Z=2.13, p=.033). The majority of parents (87%) interacted with their child about the website.
CONCLUSION - Adolescents experience psychosocial barriers to self-management that can be addressed by teaching problem solving via the Internet.
PRACTICE IMPLICATIONS - An Internet self-management problem solving program with minimal external support provides a viable option for diabetes clinics to improve pediatric diabetes outcomes.
Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.
0 Communities
3 Members
0 Resources
16 MeSH Terms
An internet-based program to improve self-management in adolescents with type 1 diabetes.
Mulvaney SA, Rothman RL, Wallston KA, Lybarger C, Dietrich MS
(2010) Diabetes Care 33: 602-4
MeSH Terms: Adolescent, Adolescent Behavior, Adolescent Health Services, Diabetes Mellitus, Type 1, Glycated Hemoglobin A, Humans, Internet, Interviews as Topic, Patient Compliance, Problem Solving, Self Care, Self-Help Groups
Show Abstract · Added December 10, 2013
OBJECTIVE To report results from YourWay, an Internet-based self-management intervention for adolescents with type 1 diabetes. RESEARCH DESIGN AND METHODS A total of 72 adolescents with type 1 diabetes, ages 13-17 years, were randomized to a usual-care-plus-Internet support or a usual-care group. The intervention was designed to enhance problem-solving barriers to self-management. A1C was obtained from medical records, and problem-solving and self-management were obtained via adolescent report. RESULTS Group differences were not statistically significant using intent-to-treat analyses. Using as-treated analyses, adolescents in the treatment condition showed statistically significant improvement in self-management (d = 0.64; P = 0.02) and important improvements in problem-solving (d = 0.30; P = 0.23) and A1C (d = -0.28; P = 0.27). Mean A1C for the intervention group remained constant (-0.01%), while the control group increased (0.33%). CONCLUSIONS This brief trial suggests that self-management support delivered through a secure website may improve self-management and offset typical decreases in adolescent glycemic control.
0 Communities
2 Members
0 Resources
12 MeSH Terms
Hopkins Teen Central: Assessment of an internet-based support system for children with cystic fibrosis.
Johnson KB, Ravert RD, Everton A
(2001) Pediatrics 107: E24
MeSH Terms: Adolescent, Attitude to Computers, Cystic Fibrosis, Health Knowledge, Attitudes, Practice, Humans, Internet, Psychology, Adolescent, Self-Help Groups
Show Abstract · Added February 12, 2015
UNLABELLED - Support groups are an important therapeutic intervention for patients with chronic debilitating illnesses. Patients who are difficult to assemble in one physical location may benefit from participating in an electronic support group (ESG). ESGs for adolescents have not been evaluated, although studies have shown a benefit to adult ESGs. Our goals were to create a web-based support service for adolescents with cystic fibrosis (CF) and to qualitatively and quantitatively measure the effects that such a support site could have on patients' relationships with the clinic faculty and staff, access to and interaction with peers with CF, and understanding of CF.
METHODS - A highly interactive ESG was developed after discussions with a team of CF specialists and patients. Eighteen of 37 teenagers with CF agreed to use this site. Each patient was asked to assess his or her perceived availability of and comfort with the clinic staff and faculty, perceived support available through peers, knowledge about CF, and perceived usefulness of the Internet as a support tool.
RESULTS - Participants logged into the site an average of 4 times each month. Teens who owned home computers accessed the site somewhat more frequently than did teens who were provided with home Internet access for the study. Most activity occurred in those sections of the site that described the participants and that allowed them to socialize. Over one half of the participants e-mailed each other at least once a week, with 77% e-mailing peers at least every other week. There was no significant difference in the participants' scores on a quiz about CF at the beginning and the end of the study; however, there was a significant decrease in perceptions about their knowledge about CF. At the conclusion of the study, participants believed that they had more friends who they could relate to than they did at the beginning of the study. Clinic staff noticed an increase in references to peers among the group who were using the site. In addition, 4 of the teens expressed a desire to get together to meet each other as a result of their interactions on the web site. There was no significant change in perceptions about the perceived availability and comfort with the clinic staff and faculty, support available through peers, knowledge about CF, and the usefulness of the Internet as a support environment. Managing the project was extremely easy, with virtually no technical or procedural issues arising during the study.
CONCLUSIONS - Teenagers with a chronic disease will actively participate in an ESG. The social and expressive aspects of their involvement with this support group hold much promise.
0 Communities
1 Members
0 Resources
8 MeSH Terms
Internet TV set-top devices for web-based projects: smooth sailing or rough surfing?
Johnson KB, Ravert RD, Everton A
(1999) Proc AMIA Symp : 535-9
MeSH Terms: Adolescent, Computer User Training, Cystic Fibrosis, Evaluation Studies as Topic, Humans, Internet, Patient Education as Topic, Self-Help Groups, Television
Show Abstract · Added February 12, 2015
BACKGROUND - The explosion of projects utilizing the World Wide Web in the home environment offer a select group of patients a tremendous tool for information management and health-related support. However, many patients do not have ready access to the Internet in their homes. For these patients, Internet TV set-top devices may provide a low cost alternative to PC-based web browsers.
METHODS - As a part of a larger descriptive study providing adolescents with access to an on-line support group, we investigated the feasibility of using an Internet TV set-top device for those patients in need of Internet access.
RESULTS - Although the devices required some configuration before being installed in the home environment, they required a minimum of support and were well accepted by these patients. However, these patients used the Internet less frequently than their peers with home personal computers--most likely due to a lack of easy availability of the telephone or television at all times.
CONCLUSION - Internet TV set-top devices represent a feasible alternative access to the World Wide Web for some patients. Any attempt to use these devices should, however, be coupled with education to all family members, and an attempt at providing a dedicated television and phone line.
0 Communities
1 Members
0 Resources
9 MeSH Terms
Collaborative research with a mutual help organization.
Rappaport J, Seidman E, Toro PA, McFadden LS, Reischl TM, Roberts LJ, Salem DA, Stein CH, Zimmerman MA
(1985) Soc Policy 15: 12-24
MeSH Terms: Adult, Aged, Community Mental Health Services, Data Collection, Female, Humans, Illinois, Longitudinal Studies, Male, Middle Aged, Self-Help Groups
Added December 10, 2013
0 Communities
1 Members
0 Resources
11 MeSH Terms
The helper-therapy principle applied to weight management specialists.
Wallston KA, McMinn M, Katahn M, Pleas J
(1983) J Community Psychol 11: 58-66
MeSH Terms: Adult, Analysis of Variance, Diet, Reducing, Female, Follow-Up Studies, Helping Behavior, Humans, Obesity, Self-Help Groups, Tennessee
Show Abstract · Added July 28, 2015
One hundred twenty applicants to a weight management specialist training program were studied over a 33-month period. Following a nine-month training period, Specialists (N = 29; those leading at least one posttraining weight management group) were compared to Contact Controls (N = 31; persons participating in the weight management program, but not in the helper role) and No Contact Controls (N = 60; those not accepted into the training program and whose only contact with the program was for data collection purposes) in a test of the helper-therapy principle. The major question was, "What are the long-term physical, psychological, and behavioral effects on overweight and formerly overweight individuals involved in helping other persons manage their weight?" Data gathered at 12 and 24 months post-training revealed few differences between the total group of specialists and persons in the two control groups. However, when the data were analyzed by the amount of commitment to the specialist role, it was found that the Higher Involved Specialists (N = 16; those who led two or more weight management groups in the year posttraining) were significantly more likely to lose additional weight (or maintain earlier weight losses), to be more consistent in their adherence to the eating and activity levels advocated by the program, to feel better about themselves and their bodies, and to maintain their levels of general well-being than control subjects or the Lesser Involved Specialists. These latter individuals (N = 13) were significantly the worse for having gone through specialist training, but not fully carrying out the specialist role.
0 Communities
1 Members
0 Resources
10 MeSH Terms
Professionals in mutual help groups: impact on social climate and members' behavior.
Toro PA, Reischl TM, Zimmerman MA, Rappaport J, Seidman E, Luke DA, Roberts LJ
(1988) J Consult Clin Psychol 56: 631-2
MeSH Terms: Adult, Group Processes, Humans, Leadership, Professional-Patient Relations, Self-Help Groups
Added December 10, 2013
0 Communities
1 Members
0 Resources
6 MeSH Terms
Charting uncharted terrain: a behavioral observation system for mutual help groups.
Roberts LJ, Luke DA, Rappaport J, Seidman E, Toro PA, Reischl TM
(1991) Am J Community Psychol 19: 715-37
MeSH Terms: Affective Symptoms, Communication, Group Processes, Group Structure, Helping Behavior, Humans, Mental Disorders, Self-Help Groups, Social Adjustment
Show Abstract · Added December 10, 2013
Describes the development of a behavioral observation system for mutual help meetings and presents evidence supporting its reliability, validity, and utility. The MHOS-BIC (Mutual Help Observation System-Behavioral Interaction Codes) was used by 10 observers to record the sequential flow of group interaction in 527 meetings. Psychometric analyses indicate that the system performed consistently with measurement objectives. Mean kappas for each of the 12 coding categories ranged from .62 to .87; the system demonstrated sensitivity to setting and time differences; and a predictable pattern of correlations was found among BIC categories and conceptually related participant and observer ratings. Studies using the BIC to address substantive questions about mutual help are reviewed, providing further evidence for its validity and utility. An empirical description of mutual help is presented using BIC data, and the promises and limitations of the system are discussed.
0 Communities
1 Members
0 Resources
9 MeSH Terms