J. Med. Internet Res. - Online information exchanges for parents of children with a rare health condition: key findings from an online support community.

Tópicos

{ health(1844) social(1437) communiti(874) }
{ studi(1119) effect(1106) posit(819) }
{ inform(2794) health(2639) internet(1427) }
{ research(1218) medic(880) student(794) }
{ data(1737) use(1416) pattern(1282) }
{ patient(1821) servic(1111) care(1106) }
{ analysi(2126) use(1163) compon(1037) }
{ framework(1458) process(801) describ(734) }
{ activ(1452) weight(1219) physic(1104) }
{ detect(2391) sensit(1101) algorithm(908) }
{ model(3404) distribut(989) bayesian(671) }
{ monitor(1329) mobil(1314) devic(1160) }
{ method(1219) similar(1157) match(930) }
{ care(1570) inform(1187) nurs(1089) }
{ age(1611) year(1155) adult(843) }
{ use(976) code(926) identifi(902) }
{ method(1969) cluster(1462) data(1082) }
{ can(774) often(719) complex(702) }
{ bind(1733) structur(1185) ligand(1036) }
{ imag(2830) propos(1344) filter(1198) }
{ patient(2315) diseas(1263) diabet(1191) }
{ take(945) account(800) differ(722) }
{ chang(1828) time(1643) increas(1301) }
{ learn(2355) train(1041) set(1003) }
{ algorithm(1844) comput(1787) effici(935) }
{ featur(1941) imag(1645) propos(1176) }
{ howev(809) still(633) remain(590) }
{ spatial(1525) area(1432) region(1030) }
{ model(3480) simul(1196) paramet(876) }
{ data(2317) use(1299) case(1017) }
{ cost(1906) reduc(1198) effect(832) }
{ can(981) present(881) function(850) }
{ use(1733) differ(960) four(931) }
{ result(1111) use(1088) new(759) }
{ decis(3086) make(1611) patient(1517) }
{ method(2212) result(1239) propos(1039) }
{ imag(1947) propos(1133) code(1026) }
{ system(1976) rule(880) can(841) }
{ measur(2081) correl(1212) valu(896) }
{ imag(1057) registr(996) error(939) }
{ sequenc(1873) structur(1644) protein(1328) }
{ featur(3375) classif(2383) classifi(1994) }
{ network(2748) neural(1063) input(814) }
{ imag(2675) segment(2577) method(1081) }
{ studi(2440) review(1878) systemat(933) }
{ motion(1329) object(1292) video(1091) }
{ assess(1506) score(1403) qualiti(1306) }
{ treatment(1704) effect(941) patient(846) }
{ surgeri(1148) surgic(1085) robot(1054) }
{ problem(2511) optim(1539) algorithm(950) }
{ error(1145) method(1030) estim(1020) }
{ concept(1167) ontolog(924) domain(897) }
{ clinic(1479) use(1117) guidelin(835) }
{ extract(1171) text(1153) clinic(932) }
{ method(1557) propos(1049) approach(1037) }
{ data(1714) softwar(1251) tool(1186) }
{ design(1359) user(1324) use(1319) }
{ control(1307) perform(991) simul(935) }
{ model(2220) cell(1177) simul(1124) }
{ general(901) number(790) one(736) }
{ method(984) reconstruct(947) comput(926) }
{ search(2224) databas(1162) retriev(909) }
{ case(1353) use(1143) diagnosi(1136) }
{ data(3963) clinic(1234) research(1004) }
{ studi(1410) differ(1259) use(1210) }
{ risk(3053) factor(974) diseas(938) }
{ perform(999) metric(946) measur(919) }
{ research(1085) discuss(1038) issu(1018) }
{ system(1050) medic(1026) inform(1018) }
{ import(1318) role(1303) understand(862) }
{ model(2341) predict(2261) use(1141) }
{ visual(1396) interact(850) tool(830) }
{ compound(1573) activ(1297) structur(1058) }
{ perform(1367) use(1326) method(1137) }
{ blood(1257) pressur(1144) flow(957) }
{ record(1888) medic(1808) patient(1693) }
{ health(3367) inform(1360) care(1135) }
{ ehr(2073) health(1662) electron(1139) }
{ state(1844) use(1261) util(961) }
{ patient(2837) hospit(1953) medic(668) }
{ model(2656) set(1616) predict(1553) }
{ medic(1828) order(1363) alert(1069) }
{ signal(2180) analysi(812) frequenc(800) }
{ group(2977) signific(1463) compar(1072) }
{ sampl(1606) size(1419) use(1276) }
{ gene(2352) biolog(1181) express(1162) }
{ data(3008) multipl(1320) sourc(1022) }
{ first(2504) two(1366) second(1323) }
{ intervent(3218) particip(2042) group(1664) }
{ activ(1138) subject(705) human(624) }
{ time(1939) patient(1703) rate(768) }
{ use(2086) technolog(871) perceiv(783) }
{ structur(1116) can(940) graph(676) }
{ high(1669) rate(1365) level(1280) }
{ cancer(2502) breast(956) screen(824) }
{ drug(1928) target(777) effect(648) }
{ implement(1333) system(1263) develop(1122) }
{ survey(1388) particip(1329) question(1065) }
{ estim(2440) model(1874) function(577) }
{ process(1125) use(805) approach(778) }

Resumo

CKGROUND: The Internet provides new opportunities for parents of children with difficult illnesses and disabilities to find information and support. The Internet is particularly important for caregivers of children with special needs due to numerous health-related decisions they face. For at-risk populations, online support communities can become key settings and channels for health promotion and communication.OBJECTIVE: This study is an initial exploration of the information-seeking and information-provision processes present in an online support community, which is an area of opportunity and interest for Internet-based medical research and practice. The aim of this study was to explore and describe information-related processes of uncertainty management in relationship to clubfoot. Specifically, the study explored interpersonal communication (information seeking and provision) in an online support community serving the needs of parents of children with clubfoot.METHODS: The study population consisted of messages posted to an online community by caregivers (parents) of children with clubfoot. The theoretical framework informing the study was the Uncertainty Management Theory (UMT). The study used content analysis to explore and categorize the content of 775 messages.RESULTS: Women authored 664 of 775 messages (86%) and men authored 47 messages (6%). Caregivers managed uncertainty through information seeking and provision behaviors that were dynamic and multilayered. The ratio of information-seeking messages to information-provision responses was 1 to 4. All five types of information-seeking behaviors proposed by Brashers' schema were identified, most of them being correlated. Information seeking using direct questions was found to be positively correlated to self-disclosure (r=.538), offering of a candidate answer (r=.318), and passive information seeking (r=.253). Self-disclosure was found to be positively correlated to provision of a candidate answer (r=.324), second-guessing (r=.149), and passive information seeking (r=.366). Provision of a candidate answer was found to be positively correlated with second-guessing (r=.193) and passive information seeking (r=.223). Second-guessing was found to be positively correlated to passive information seeking (r=.311). All correlations reported above were statistically significant (P<0.01). Of the 775 messages analyzed, 255 (33%) identified a medical professional or institution by name. Detailed medical information was provided in 101 (13%) messages, with the main source of information identified being personal experience rather than medical sources.CONCLUSION: Online communities can be an effective channel for caregivers, especially women, to seek and offer information required for managing clubfoot-related uncertainty. To enhance communication with parents, health care institutions may need to invest additional resources in user-friendly online information sources and online interactions with caregivers of children with special illnesses such as clubfoot. Furthermore, explorations of information-seeking and information-provision behaviors in online communities can provide valuable data for interdisciplinary health research and practice.

Resumo Limpo

ckground internet provid new opportun parent children difficult ill disabl find inform support internet particular import caregiv children special need due numer healthrel decis face atrisk popul onlin support communiti can becom key set channel health promot communicationobject studi initi explor informationseek informationprovis process present onlin support communiti area opportun interest internetbas medic research practic aim studi explor describ informationrel process uncertainti manag relationship clubfoot specif studi explor interperson communic inform seek provis onlin support communiti serv need parent children clubfootmethod studi popul consist messag post onlin communiti caregiv parent children clubfoot theoret framework inform studi uncertainti manag theori umt studi use content analysi explor categor content messagesresult women author messag men author messag caregiv manag uncertainti inform seek provis behavior dynam multilay ratio informationseek messag informationprovis respons five type informationseek behavior propos brasher schema identifi correl inform seek use direct question found posit correl selfdisclosur r offer candid answer r passiv inform seek r selfdisclosur found posit correl provis candid answer r secondguess r passiv inform seek r provis candid answer found posit correl secondguess r passiv inform seek r secondguess found posit correl passiv inform seek r correl report statist signific p messag analyz identifi medic profession institut name detail medic inform provid messag main sourc inform identifi person experi rather medic sourcesconclus onlin communiti can effect channel caregiv especi women seek offer inform requir manag clubfootrel uncertainti enhanc communic parent health care institut may need invest addit resourc userfriend onlin inform sourc onlin interact caregiv children special ill clubfoot furthermor explor informationseek informationprovis behavior onlin communiti can provid valuabl data interdisciplinari health research practic

Resumos Similares

J. Med. Internet Res. - Would you tell everyone this? Facebook conversations as health promotion interventions. ( 0,868677048558848 )
J. Med. Internet Res. - What are health-related users tweeting? A qualitative content analysis of health-related users and their messages on twitter. ( 0,864793182565404 )
J. Med. Internet Res. - Implementing a virtual community of practice for family physician training: a mixed-methods case study. ( 0,861066927245511 )
J. Med. Internet Res. - Applying social network analysis to understand the knowledge sharing behaviour of practitioners in a clinical online discussion forum. ( 0,860634510462346 )
J. Med. Internet Res. - Mind the gap: social media engagement by public health researchers. ( 0,855784122062438 )
AMIA Annu Symp Proc - Sharing is caring, but not error free: transparency of granular controls for sharing personal health information in social networks. ( 0,854902579758655 )
Inform Health Soc Care - Characteristics of patients seeking health information online via social health networks versus general Internet sites: a comparative study. ( 0,854861465630522 )
Int J Health Geogr - Neighborhood differences in social capital in Ghent (Belgium): a multilevel approach. ( 0,854048149566977 )
J. Med. Internet Res. - Interaction patterns of nurturant support exchanged in online health social networking. ( 0,848977562265014 )
Telemed J E Health - The world of e-patients: A content analysis of online social networks focusing on diseases. ( 0,8455294587905 )
J. Med. Internet Res. - What young people want from a sexual health website: design and development of Sexunzipped. ( 0,844676638260941 )
J. Med. Internet Res. - Analysis of a parent-initiated social media campaign for Hirschsprung's disease. ( 0,842243722211595 )
Inform Health Soc Care - Online conversations among Ontario university students: environmental concerns. ( 0,838341012185315 )
IEEE J Biomed Health Inform - Network-based modeling and intelligent data mining of social media for improving care. ( 0,837111300411727 )
J. Med. Internet Res. - The use of social media by state tobacco control programs to promote smoking cessation: a cross-sectional study. ( 0,834478922858604 )
J. Med. Internet Res. - Therapeutic affordances of social media: emergent themes from a global online survey of people with chronic pain. ( 0,834440122210399 )
J. Med. Internet Res. - Tweet content related to sexually transmitted diseases: no joking matter. ( 0,828905370956405 )
J. Med. Internet Res. - Global reach of direct-to-consumer advertising using social media for illicit online drug sales. ( 0,828882405265996 )
J Biomed Inform - Circles of Health: towards an advanced social network about disabilities of neurological origin. ( 0,828028779015052 )
AMIA Annu Symp Proc - Does sustained participation in an online health community affect sentiment? ( 0,826972055539187 )
IEEE Trans Image Process - Cooperation stimulation strategies for peer-to-peer wireless live video-sharing social networks. ( 0,826719155256885 )
J. Med. Internet Res. - HealthTrust: a social network approach for retrieving online health videos. ( 0,826706245001602 )
J. Med. Internet Res. - User-generated online health content: a survey of Internet users in the United Kingdom. ( 0,826294240579206 )
J. Med. Internet Res. - Public health interventions: reaching Latino adolescents via short message service and social media. ( 0,825705906851169 )
J. Med. Internet Res. - Did you hear the one about the doctor? An examination of doctor jokes posted on Facebook. ( 0,823884988829151 )
J. Med. Internet Res. - Superusers in social networks for smoking cessation: analysis of demographic characteristics and posting behavior from the Canadian Cancer Society's smokers' helpline online and StopSmokingCenter.net. ( 0,816617475756707 )
J. Med. Internet Res. - Tweeting for and against public health policy: response to the Chicago Department of Public Health's electronic cigarette Twitter campaign. ( 0,811673675819573 )
J. Med. Internet Res. - Pro-anorexia and pro-recovery photo sharing: a tale of two warring tribes. ( 0,8111900213973 )
J Biomed Inform - Recommendations for the design, implementation and evaluation of social support in online communities, networks, and groups. ( 0,810164342710906 )
Inform Health Soc Care - Health care development: integrating transaction cost theory with social support theory. ( 0,809646369531907 )
J. Med. Internet Res. - Community management that works: how to build and sustain a thriving online health community. ( 0,807087308903005 )
J. Med. Internet Res. - The role of Facebook in Crush the Crave, a mobile- and social media-based smoking cessation intervention: qualitative framework analysis of posts. ( 0,805357855896346 )
BMC Med Inform Decis Mak - Making decisions in a complex information environment: evidential preference and information we trust. ( 0,803182622343932 )
J Biomed Inform - Health outcomes and related effects of using social media in chronic disease management: a literature review and analysis of affordances. ( 0,800497221191284 )
J. Med. Internet Res. - Sources of information and behavioral patterns in online health forums: observational study. ( 0,797962962770656 )
J. Med. Internet Res. - Growing a professional network to over 3000 members in less than 4 years: evaluation of InspireNet, British Columbia's virtual nursing health services research network. ( 0,797863240443994 )
J. Med. Internet Res. - The conceptual and practical ethical dilemmas of using health discussion board posts as research data. ( 0,793327100749909 )
J. Med. Internet Res. - Communicating genetics and smoking through social media: are we there yet? ( 0,793243889284808 )
J Med Syst - Facebook as a platform for health information and communication: a case study of a diabetes group. ( 0,791075083922151 )
J. Med. Internet Res. - A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. ( 0,790009154307332 )
Health Informatics J - Social media and physicians: Exploring the benefits and challenges. ( 0,789380579533934 )
Health Info Libr J - Assessment of vaccination-related information for consumers available on Facebook. ( 0,786634635305528 )
J. Med. Internet Res. - An exploration of social circles and prescription drug abuse through Twitter. ( 0,784246832116257 )
Appl Clin Inform - The use of smartphones on General Internal Medicine wards: a mixed methods study. ( 0,782967693897353 )
J. Med. Internet Res. - Queer as F**k: reaching and engaging gay men in sexual health promotion through social networking sites. ( 0,781444533289928 )
Spat Spatiotemporal Epidemiol - Immigrant maternal depression and social networks. A multilevel Bayesian spatial logistic regression in South Western Sydney, Australia. ( 0,781019535848725 )
J. Med. Internet Res. - Barriers and facilitators for the implementation of an online clinical health community in addition to usual fertility care: a cross-sectional study. ( 0,780261975150501 )
J Am Med Inform Assoc - Reviewing social media use by clinicians. ( 0,779002844382773 )
J Am Med Inform Assoc - Nationwide online social networking for cardiovascular care in Korea using Facebook. ( 0,778523197943085 )
J. Med. Internet Res. - Internet and mobile technology use among urban African American parents: survey study of a clinical population. ( 0,776646995620245 )
J. Med. Internet Res. - Work and mass personal communication as means of navigating nutrition and exercise concerns in an online cancer community. ( 0,77389156075202 )
J. Med. Internet Res. - Still a hard-to-reach population? Using social media to recruit Latino gay couples for an HIV intervention adaptation study. ( 0,772912643131405 )
J. Med. Internet Res. - Are public health organizations tweeting to the choir? Understanding local health department Twitter followership. ( 0,769186353060968 )
J. Med. Internet Res. - Use of twitter among local health departments: an analysis of information sharing, engagement, and action. ( 0,768159770733095 )
J. Med. Internet Res. - Social media and mobile apps for health promotion in Australian Indigenous populations: scoping review. ( 0,766983078030045 )
Health Info Libr J - Examining the application of Web 2.0 in medical-related organisations. ( 0,76633807469855 )
J. Med. Internet Res. - Wikipedia: a key tool for global public health promotion. ( 0,765151800150366 )
J. Med. Internet Res. - An AIDS-denialist online community on a Russian social networking service: patterns of interactions with newcomers and rhetorical strategies of persuasion. ( 0,762800202715387 )
BMC Med Inform Decis Mak - Avatars using computer/smartphone mediated communication and social networking in prevention of sexually transmitted diseases among North-Norwegian youngsters. ( 0,760720465332984 )
J. Med. Internet Res. - Online social and professional support for smokers trying to quit: an exploration of first time posts from 2562 members. ( 0,758925348177376 )
J. Med. Internet Res. - Communicating the experience of chronic pain and illness through blogging. ( 0,758795637011715 )
J Am Med Inform Assoc - Not all my friends need to know: a qualitative study of teenage patients, privacy, and social media. ( 0,752911066507852 )
Inform Health Soc Care - Relatives and friends queries on a psychologists question and answer forum online - authorship and contents. ( 0,752902787296202 )
J. Med. Internet Res. - Sharing medical data for health research: the early personal health record experience. ( 0,751849307018421 )
BMC Med Inform Decis Mak - Mobile phones and social structures: an exploration of a closed user group in rural Ghana. ( 0,745859562834911 )
J. Med. Internet Res. - Designing messaging to engage patients in an online suicide prevention intervention: survey results from patients with current suicidal ideation. ( 0,74482151316028 )
BMC Med Inform Decis Mak - Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users. ( 0,744405658939948 )
J Am Med Inform Assoc - Participatory surveillance of diabetes device safety: a social media-based complement to traditional FDA reporting. ( 0,741104294159374 )
J Am Med Inform Assoc - Tweeting it off: characteristics of adults who tweet about a weight loss attempt. ( 0,740604707726616 )
J Med Syst - Learning from colleagues about healthcare IT implementation and optimization: lessons from a medical informatics listserv. ( 0,734651291431661 )
J. Med. Internet Res. - Social and self-reflective use of a Web-based personally controlled health management system. ( 0,734008686361259 )
Telemed J E Health - Spanning boundaries into remote communities: an exploration of experiences with telehealth chronic disease self-management programs in rural northern ontario, Canada. ( 0,733724218727746 )
J. Med. Internet Res. - Social media: a review and tutorial of applications in medicine and health care. ( 0,733653888804167 )
J. Med. Internet Res. - Use of social media across US hospitals: descriptive analysis of adoption and utilization. ( 0,732894677654658 )
Int J Med Inform - Factors that influence public engagement with eHealth: A literature review. ( 0,730594557511083 )
J. Med. Internet Res. - Enabling community through social media. ( 0,730240340820449 )
J. Med. Internet Res. - Using twitter to examine smoking behavior and perceptions of emerging tobacco products. ( 0,726169641913961 )
AMIA Annu Symp Proc - Drama and danger: the opportunities and challenges of promoting youth sexual health through online social networks. ( 0,725829791779214 )
J. Med. Internet Res. - Should health organizations use web 2.0 media in times of an infectious disease crisis? An in-depth qualitative study of citizens' information behavior during an EHEC outbreak. ( 0,723655852276272 )
J. Med. Internet Res. - Social media and rating sites as tools to understanding quality of care: a scoping review. ( 0,722613599752018 )
Health Info Libr J - Development of a complex intervention to improve health literacy skills. ( 0,719257034118069 )
J. Med. Internet Res. - How community matters for how people interact with information: mixed methods study of young men who have sex with other men. ( 0,716790994934172 )
J. Med. Internet Res. - Correlates of health-related social media use among adults. ( 0,715903008199836 )
Med Decis Making - Health effects in significant others: separating family and care-giving effects. ( 0,71461226918089 )
J. Med. Internet Res. - Which frail older patients use online health communities and why? A mixed methods process evaluation of use of the Health and Welfare portal. ( 0,711481366310447 )
BMC Med Inform Decis Mak - Against conventional wisdom: when the public, the media, and medical practice collide. ( 0,710555449210116 )
Methods Inf Med - Inferring community structure in healthcare forums. An empirical study. ( 0,707555133455522 )
BMC Med Inform Decis Mak - Web 2.0 and internet social networking: a new tool for disaster management?--lessons from Taiwan. ( 0,706341484787004 )
J. Med. Internet Res. - Seeking support on facebook: a content analysis of breast cancer groups. ( 0,703386871038866 )
J. Med. Internet Res. - Use of social media by Western European hospitals: longitudinal study. ( 0,701295580840563 )
J. Med. Internet Res. - Can anonymous posters on medical forums be reidentified? ( 0,697904421129239 )
J Am Med Inform Assoc - An informatics agenda for public health: summarized recommendations from the 2011 AMIA PHI Conference. ( 0,697609148921564 )
J. Med. Internet Res. - Digital social media, youth, and nonmedical use of prescription drugs: the need for reform. ( 0,695803446094492 )
J. Med. Internet Res. - Anonymity versus privacy: selective information sharing in online cancer communities. ( 0,695159920424719 )
J. Med. Internet Res. - Internet and social media for health-related information and communication in health care: preferences of the Dutch general population. ( 0,692454485670871 )
J. Med. Internet Res. - Online health information seeking behaviors of Hispanics in New York City: a community-based cross-sectional study. ( 0,691753422375987 )
J. Med. Internet Res. - Social cognitive determinants of nutrition and physical activity among web-health users enrolling in an online intervention: the influence of social support, self-efficacy, outcome expectations, and self-regulation. ( 0,687711712232228 )
Int J Med Inform - The development of a health information exchange to enhance care and improve patient outcomes among HIV+ individuals in rural North Carolina. ( 0,686464797822809 )
J. Med. Internet Res. - Are health behavior change interventions that use online social networks effective? A systematic review. ( 0,684221981247984 )
J. Med. Internet Res. - Patient and parent views on a Web 2.0 Diabetes Portal--the management tool, the generator, and the gatekeeper: qualitative study. ( 0,678836802218249 )