The Experts below are selected from a list of 306 Experts worldwide ranked by ideXlab platform
Neil S Coulson - One of the best experts on this subject based on the ideXlab platform.
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the use of an Online Support Group for neuromuscular disorders a thematic analysis of message postings
Disability and Rehabilitation, 2018Co-Authors: Oonagh Meade, Heather Buchanan, Neil S CoulsonAbstract:Purpose: People affected by neuromuscular disorders can experience adverse psychosocial consequences and difficulties accessing information and Support. Online Support Groups provide new opportunities for peer Support. The aim of this study was to understand how contributors used the message board function of a newly-available neuromuscular disorders Online Support Group. Methods: Message postings (n=1,951) from the first five months of the message board of a newly-formed Online Support Group for neuromuscular disorders hosted by a charitable organisation were analysed using inductive thematic analysis. Results: Members created a sense of community through disclosing personal information, connecting with people with similar illness experiences or interests, welcoming others, and sharing aspirations for the development of a resourceful community. Experiences, emotional reactions and Support were shared in relation to: delayed diagnosis; symptom interpretation; illness management and progression; the isolating impact of rare disorders; and the influence of social and political factors on illness experiences. Conclusions: This study provided a novel insight into individuals’ experiences of accessing a newly-available Online Support Group for rare conditions hosted by a charitable organisation. The findings highlight how the Online Support Group provided an important peer Support environment for members to connect with others, exchange information and Support, and engender discussion on political and social issues unique to living with often-rare neuromuscular disorders. Online Support Groups may therefore provide an important and easily accessible Support outlet for people with neuromuscular disorders as well as a platform for empowering members to raise awareness about the impact of living with these conditions. Further research is needed to examine member motivations for using such Groups and any effects of participation in greater detail.
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therapeutic affordances of Online Support Group use in women with endometriosis
Journal of Medical Internet Research, 2016Co-Authors: Amie Shoebotham, Neil S CoulsonAbstract:Background: The Internet has provided women living with endometriosis new opportunities to seek Support Online. Online Support Groups may provide a range of therapeutic affordances which may benefit these women. Objective: To examine the presence of therapeutic affordances as perceived by women who use endometriosis Online Support Groups. Methods: Sixty-nine women (aged 19 to 50 years; Mean = 34.2; 65.2% UK; 21.7% USA) participated in an Online interview exploring Online Support Group use. Participants had been using Online Support Groups on average 2 years and 4 months (Range = 1 month to 14 years, 9 months). Responses were analysed using inductive thematic analysis. Results: The analysis revealed 4 therapeutic affordances related to Online Support Group use; i) “connection” i.e. the ability to connect in order to Support each other, exchange advice, and to try to overcome feelings of loneliness; ii) “exploration” i.e. the ability to look for information, learn and bolster their knowledge; iii) “narration” i.e. the ability to share their experiences, as well as read about the experiences of others; and iv) “self-presentation” i.e. the ability to manage how they present themselves Online. The associated outcomes of use were predominantly positive, such as reassurance and improved coping. However, a number of negative aspects were revealed including: concerns about the accuracy of information, arguments between members, over-reliance on the Group, becoming upset by negative experiences or good news items and confidentiality of personal information. Conclusions: Our findings Support the SCENA model (Self-presentation, Connection, Exploration, Narration and Adaptation) proposed by Merolli et al., (2014) and reveal a range of positive aspects that may benefit members, particularly in relation to reassurance and coping. However, negative aspects need to be addressed in order to maximise the potential benefit of Support Groups. Some of these can be addressed relatively easily through making privacy policies clearer, including health professionals to moderate content and structuring forums to encourage the sharing of positive stories.
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are Online Support Groups always beneficial a qualitative exploration of the empowering and disempowering processes of participation within hiv aids related Online Support Groups
International Journal of Nursing Studies, 2014Co-Authors: Neil S CoulsonAbstract:Abstract Background Human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) is one of the leading concerns in healthcare. Individuals living with HIV/AIDS are often confronted with tremendous physical and psychosocial challenges. Online Support Groups can provide a valuable source of information, advice and Support, and a medium through which individuals living with HIV/AIDS can interact with each other and share their experiences. However, very little is known about how Online Support Group might promote empowerment and the potential disadvantages associated with Online Support Group use among individuals living with HIV/AIDS. Objectives The present study explored the potential empowering and disempowering processes, and empowering outcomes of Online Support Group use among individuals with HIV/AIDS. Design, settings, participants A total of 115 HIV-positive Online Support Group members were recruited from HIV-related Online Support Groups. They completed an Online survey exploring their experiences of Online Support Group use. Results Thematic analysis revealed six empowering processes arising from use of Online Support Groups: exchanging information, sharing experiences, connecting to others, encountering emotional Support, finding recognition and understanding, and helping others. Six empowering outcomes were identified: increased optimism, emotional well-being, social well-being, being better informed, improved disease management, and feeling confident in the relationship with physicians. Potentially disempowering processes were also identified which included: being unable to connect physically, inappropriate behaviour Online, declining real life relationships, and information overload and misinformation. Conclusion Findings suggest ways through which individuals with HIV/AIDS may be empowered although some problematic features specific to the Online context may also be present.
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Online Support Group use and psychological health for individuals living with hiv aids
Patient Education and Counseling, 2013Co-Authors: Neil S CoulsonAbstract:Abstract Objective The Internet provides an opportunity for individuals with HIV/AIDS to obtain Support and information in a timely and convenient manner. The present study examines the psychological effects of Online Support Group use for individuals living with HIV/AIDS. Methods A total of 340 HIV positive Online Support Group users completed an Online survey. Results Results from structural equation modeling showed that individuals with higher levels of Online Support Group participation had higher levels of empowering processes, which in turn, had higher levels of optimism toward life. Optimism was related to lower levels of loneliness and depression while loneliness was also related to higher levels of depression. Conclusion The findings suggest that participants with higher levels of Online Support Group participation had better psychological health than those with lower levels of participation. Practice implications Findings suggest that the use of Online Support Groups could be promoted to individuals with HIV/AIDS. Healthcare professionals should work to increase the motivation and confidence patients have in using Online Support Groups. Health education should also be provided to patients with HIV/AIDS so to improve their skills and literacy in using Online Support Groups.
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developing a model for Online Support Group use empowering processes and psychosocial outcomes for individuals living with hiv aids
Psychology & Health, 2012Co-Authors: Neil S CoulsonAbstract:This study examined the mechanism through which Online Support Group (OSG) participation may promote patient empowerment among 340 individuals living with HIV/AIDS. Results from structural equation modelling revealed that greater use of OSGs was associated with more frequent occurrence of the empowering processes as measured by receiving useful information, receiving social Support, finding positive meaning and helping others. Receiving useful information and finding positive meaning were related to higher levels of adaptive coping and lower levels of maladaptive coping, while receiving social Support and helping others were related to higher levels of self-care self-efficacy, which in turn was related to higher levels of adaptive coping, and lower levels of maladaptive coping. Finally, higher levels of maladaptive coping were related to poorer quality of life, while higher levels of adaptive coping were related to better quality of life. Results suggest that OSG participation may offer some benefits for those living with HIV/AIDS.
Bradford W Hesse - One of the best experts on this subject based on the ideXlab platform.
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social media use in the united states implications for health communication
Journal of Medical Internet Research, 2009Co-Authors: Wenying Sylvia Chou, Yvonne M Hunt, Ellen Burke Beckjord, Richard P Moser, Bradford W HesseAbstract:Background: Given the rapid changes in the communication landscape brought about by participative Internet use and social media, it is important to develop a better understanding of these technologies and their impact on health communication. The first step in this effort is to identify the characteristics of current social media users. Up-to-date reporting of current social media use will help monitor the growth of social media and inform health promotion/communication efforts aiming to effectively utilize social media. Objective: The purpose of the study is to identify the sociodemographic and health-related factors associated with current adult social media users in the United States. Methods: Data came from the 2007 iteration of the Health Information National Trends Study (HINTS, N = 7674). HINTS is a nationally representative cross-sectional survey on health-related communication trends and practices. Survey respondents who reported having accessed the Internet (N = 5078) were asked whether, over the past year, they had (1) participated in an Online Support Group, (2) written in a blog, (3) visited a social networking site. Bivariate and multivariate logistic regression analyses were conducted to identify predictors of each type of social media use. Results: Approximately 69% of US adults reported having access to the Internet in 2007. Among Internet users, 5% participated in an Online Support Group, 7% reported blogging, and 23% used a social networking site. Multivariate analysis found that younger age was the only significant predictor of blogging and social networking site participation; a statistically significant linear relationship was observed, with younger categories reporting more frequent use. Younger age, poorer subjective health, and a personal cancer experience predicted Support Group participation. In general, social media are penetrating the US population independent of education, race/ethnicity, or health care access. Conclusions: Recent growth of social media is not uniformly distributed across age Groups; therefore, health communication programs utilizing social media must first consider the age of the targeted population to help ensure that messages reach the intended audience. While racial/ethnic and health status–related disparities exist in Internet access, among those with Internet access, these characteristics do not affect social media use. This finding suggests that the new technologies, represented by social media, may be changing the communication pattern throughout the United States. [J Med Internet Res 2009;11(4):e48]
Andreas Ihrig - One of the best experts on this subject based on the ideXlab platform.
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the effect of an Online Support Group on patients treatment decisions for localized prostate cancer an Online survey
Urologic Oncology-seminars and Original Investigations, 2017Co-Authors: Johannes Huber, Philipp Maatz, Tanja Muck, Bastian Keck, Hanschristoph Friederich, Wolfgang Herzog, Andreas IhrigAbstract:Abstract Objective To analyze the effect of an Online Support Group (OSG) on the final treatment decision for localized prostate cancer. Methods We performed a cross-sectional descriptive study of the largest German prostate cancer OSG between July and October 2013. The Online survey comprised 127 questions covering sociodemographic and disease-related information, decision-making habits, health-related quality of life, distress, depression, and anxiety. The primary outcome was to measure the effect of an OSG on the final treatment decision. Results We analyzed the completed questionnaires from 686 patients with prostate cancer, 200 (29.2%) of whom revised their initial treatment decision. After revising their decisions, these patients more frequently underwent external beam radiation therapy (44.5% vs. 36.4%, P = 0.048) and active surveillance (10.5% vs. 3.7%, P Conclusions Of all patients participating in the OSG, 29.2% revised their initial treatment decision. We estimate that this phenomenon may affect 17,000 patients with prostate cancer in the United States of America every year. This finding highlights the importance of OSGs for the health care system. The patient׳s desired degree of involvement in decision-making should be routinely clarified to adjust counseling accordingly. Trial registration www.germanctr.de , number DRKS00005086
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decision making in localized prostate cancer lessons learned from an Online Support Group
BJUI, 2011Co-Authors: Johannes Huber, Andreas Ihrig, T J Peters, Christian G Huber, Anja Kessler, Boris Hadaschik, Sascha Pahernik, Markus HohenfellnerAbstract:Study Type – Patient (preference/ecological) Level of Evidence 2c What's known on the subject? and What does the study add? Social Support plays a major role for decision-making in localized prostate cancer and the importance of Online resources has become increasingly recognized. However, so far most of the knowledge has been generated on formal and stylistic aspects. The study adds to understanding the content and the dynamics of peer-to-peer counselling in an Online Support Group. OBJECTIVE • To investigate patient-to-patient communication with regard to decision-making in localized prostate cancer; as most of it is done in private, Online Support Groups are a unique means for this task. PATIENTS AND METHODS • Over a 32-month period, we screened 501 threads in the largest German Online Support Group for prostate cancer. • Threads started by questioners newly diagnosed with localized prostate cancer and stating decision-making as the key topic were included; in all, 82 (16.4%) threads met these criteria. • Two independent investigators characterized every thread following a standardized protocol. • Fisher’s exact test and Mann–Whitney U-test were applied for Group analyses. A complementary qualitative linguistic approach was chosen. RESULTS • Threads were most commonly started to ask for therapy recommendations (66%), information on the course of treatment (46%) and emotional Support (46%). • Answers consisted of treatment recommendations (40%), emotional Support (37%) and personal experiences (28%). • A second opinion on the biopsy cores (51%) and additional imaging (40%) were common suggestions. • The rate of advice for radical prostatectomy (RP) vs radiotherapy was 67 vs 82%. Thus, surgery was less recommended in our sample (P= 0.01); 75% of the men with an initial therapeutic preference were finally confirmed herein. • Linguistic analysis showed that posters frequently use a tentative language style and that common language is avoided. CONCLUSIONS • Patients readily receive information, advice and emotional Support as part of an Online Support Group. • The scientific evaluation of an Online Support Group is a complementary way of getting to know our patients’ needs and worries. • Patient–physician contact can benefit from this knowledge.
Johannes Huber - One of the best experts on this subject based on the ideXlab platform.
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the effect of an Online Support Group on patients treatment decisions for localized prostate cancer an Online survey
Urologic Oncology-seminars and Original Investigations, 2017Co-Authors: Johannes Huber, Philipp Maatz, Tanja Muck, Bastian Keck, Hanschristoph Friederich, Wolfgang Herzog, Andreas IhrigAbstract:Abstract Objective To analyze the effect of an Online Support Group (OSG) on the final treatment decision for localized prostate cancer. Methods We performed a cross-sectional descriptive study of the largest German prostate cancer OSG between July and October 2013. The Online survey comprised 127 questions covering sociodemographic and disease-related information, decision-making habits, health-related quality of life, distress, depression, and anxiety. The primary outcome was to measure the effect of an OSG on the final treatment decision. Results We analyzed the completed questionnaires from 686 patients with prostate cancer, 200 (29.2%) of whom revised their initial treatment decision. After revising their decisions, these patients more frequently underwent external beam radiation therapy (44.5% vs. 36.4%, P = 0.048) and active surveillance (10.5% vs. 3.7%, P Conclusions Of all patients participating in the OSG, 29.2% revised their initial treatment decision. We estimate that this phenomenon may affect 17,000 patients with prostate cancer in the United States of America every year. This finding highlights the importance of OSGs for the health care system. The patient׳s desired degree of involvement in decision-making should be routinely clarified to adjust counseling accordingly. Trial registration www.germanctr.de , number DRKS00005086
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decision making in localized prostate cancer lessons learned from an Online Support Group
BJUI, 2011Co-Authors: Johannes Huber, Andreas Ihrig, T J Peters, Christian G Huber, Anja Kessler, Boris Hadaschik, Sascha Pahernik, Markus HohenfellnerAbstract:Study Type – Patient (preference/ecological) Level of Evidence 2c What's known on the subject? and What does the study add? Social Support plays a major role for decision-making in localized prostate cancer and the importance of Online resources has become increasingly recognized. However, so far most of the knowledge has been generated on formal and stylistic aspects. The study adds to understanding the content and the dynamics of peer-to-peer counselling in an Online Support Group. OBJECTIVE • To investigate patient-to-patient communication with regard to decision-making in localized prostate cancer; as most of it is done in private, Online Support Groups are a unique means for this task. PATIENTS AND METHODS • Over a 32-month period, we screened 501 threads in the largest German Online Support Group for prostate cancer. • Threads started by questioners newly diagnosed with localized prostate cancer and stating decision-making as the key topic were included; in all, 82 (16.4%) threads met these criteria. • Two independent investigators characterized every thread following a standardized protocol. • Fisher’s exact test and Mann–Whitney U-test were applied for Group analyses. A complementary qualitative linguistic approach was chosen. RESULTS • Threads were most commonly started to ask for therapy recommendations (66%), information on the course of treatment (46%) and emotional Support (46%). • Answers consisted of treatment recommendations (40%), emotional Support (37%) and personal experiences (28%). • A second opinion on the biopsy cores (51%) and additional imaging (40%) were common suggestions. • The rate of advice for radical prostatectomy (RP) vs radiotherapy was 67 vs 82%. Thus, surgery was less recommended in our sample (P= 0.01); 75% of the men with an initial therapeutic preference were finally confirmed herein. • Linguistic analysis showed that posters frequently use a tentative language style and that common language is avoided. CONCLUSIONS • Patients readily receive information, advice and emotional Support as part of an Online Support Group. • The scientific evaluation of an Online Support Group is a complementary way of getting to know our patients’ needs and worries. • Patient–physician contact can benefit from this knowledge.
Wenying Sylvia Chou - One of the best experts on this subject based on the ideXlab platform.
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social media use in the united states implications for health communication
Journal of Medical Internet Research, 2009Co-Authors: Wenying Sylvia Chou, Yvonne M Hunt, Ellen Burke Beckjord, Richard P Moser, Bradford W HesseAbstract:Background: Given the rapid changes in the communication landscape brought about by participative Internet use and social media, it is important to develop a better understanding of these technologies and their impact on health communication. The first step in this effort is to identify the characteristics of current social media users. Up-to-date reporting of current social media use will help monitor the growth of social media and inform health promotion/communication efforts aiming to effectively utilize social media. Objective: The purpose of the study is to identify the sociodemographic and health-related factors associated with current adult social media users in the United States. Methods: Data came from the 2007 iteration of the Health Information National Trends Study (HINTS, N = 7674). HINTS is a nationally representative cross-sectional survey on health-related communication trends and practices. Survey respondents who reported having accessed the Internet (N = 5078) were asked whether, over the past year, they had (1) participated in an Online Support Group, (2) written in a blog, (3) visited a social networking site. Bivariate and multivariate logistic regression analyses were conducted to identify predictors of each type of social media use. Results: Approximately 69% of US adults reported having access to the Internet in 2007. Among Internet users, 5% participated in an Online Support Group, 7% reported blogging, and 23% used a social networking site. Multivariate analysis found that younger age was the only significant predictor of blogging and social networking site participation; a statistically significant linear relationship was observed, with younger categories reporting more frequent use. Younger age, poorer subjective health, and a personal cancer experience predicted Support Group participation. In general, social media are penetrating the US population independent of education, race/ethnicity, or health care access. Conclusions: Recent growth of social media is not uniformly distributed across age Groups; therefore, health communication programs utilizing social media must first consider the age of the targeted population to help ensure that messages reach the intended audience. While racial/ethnic and health status–related disparities exist in Internet access, among those with Internet access, these characteristics do not affect social media use. This finding suggests that the new technologies, represented by social media, may be changing the communication pattern throughout the United States. [J Med Internet Res 2009;11(4):e48]
