scholarly journals Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences

10.2196/18099 ◽  
2020 ◽  
Vol 22 (11) ◽  
pp. e18099
Author(s):  
Victoria Perkins ◽  
Neil S Coulson ◽  
E Bethan Davies
Keyword(s):  
Tourette Syndrome ◽  
Social Isolation ◽  
Online Communities ◽  
Emotional Support ◽  
Online Survey ◽  
Well Being ◽  
Tic Disorders ◽  
Online Support ◽  
Face To Face ◽  
Face Support

Background People living with a tic disorder (TD)—such as Tourette syndrome (TS)—experience many negative psychological and social challenges arising from chronic tics, such as stigmatization from peers and poorer quality of life, and these can impact upon their families too. It can be difficult for this population to access face-to-face support for tics, and so online support communities offer one avenue for support from peers facing similar experiences. However, little is known about how online support communities may be used by people with TS and other TDs, and by others (eg, parents, caregivers) supporting a person with TS/TD. Objective This study aimed to explore users’ experiences of participation in online support communities for TS and TDs. Methods In total, 90 respondents (aged 13-62 years; 62% [56/90] female) from 13 countries completed an online survey exploring their experiences of using online support communities for TS and TDs. Respondents were people living with TS/TD themselves (n=68) or supportive others of someone with TS/TD (eg, parent, sibling, spouse; n=14), or both (n=8). The online survey contained open-ended questions eliciting their self-reported motivations for using online communities, their benefits and drawbacks of participation, and whether online support communities affected offline management of tics. Responses were analyzed using thematic analysis. Results Seven overarching themes captured experiences of using online support communities for TS/TDs. The overwhelming reason for their use was to find accessible support due to a lack of offline face-to-face support. Online support communities were valued sources of informational and emotional support, and also had a positive impact upon helping users’ psychological well-being. Online communities helped provide a space where people with TS/TDs could feel accepted and reduce the social isolation they felt offline. The suggestible nature of tics and being reminded of the challenging nature of TDs were main disadvantages arising from using online support communities, alongside conflict arising within online communities. Conclusions The findings suggest that online support communities appear to offer valuable informational and emotional support to those living with TS/TD and their families too, especially given the lack of locally available support. This facilitates a sense of community online, which can help users in overcoming long-standing social isolation and aid self-reported improvements in psychosocial well-being. Users reported some drawbacks in engaging with online support communities, such as conflict between different types of users and triggering content, which negatively affected experiences of community participation.

scholarly journals Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences (Preprint)

2020 ◽  
Author(s):  
Victoria Perkins ◽  
Neil S Coulson ◽  
E Bethan Davies
Keyword(s):  
Tourette Syndrome ◽  
Social Isolation ◽  
Online Communities ◽  
Emotional Support ◽  
Online Survey ◽  
Well Being ◽  
Tic Disorders ◽  
Online Support ◽  
Face To Face ◽  
Face Support

BACKGROUND People living with a tic disorder (TD)—such as Tourette syndrome (TS)—experience many negative psychological and social challenges arising from chronic tics, such as stigmatization from peers and poorer quality of life, and these can impact upon their families too. It can be difficult for this population to access face-to-face support for tics, and so online support communities offer one avenue for support from peers facing similar experiences. However, little is known about how online support communities may be used by people with TS and other TDs, and by others (eg, parents, caregivers) supporting a person with TS/TD. OBJECTIVE This study aimed to explore users’ experiences of participation in online support communities for TS and TDs. METHODS In total, 90 respondents (aged 13-62 years; 62% [56/90] female) from 13 countries completed an online survey exploring their experiences of using online support communities for TS and TDs. Respondents were people living with TS/TD themselves (n=68) or supportive others of someone with TS/TD (eg, parent, sibling, spouse; n=14), or both (n=8). The online survey contained open-ended questions eliciting their self-reported motivations for using online communities, their benefits and drawbacks of participation, and whether online support communities affected offline management of tics. Responses were analyzed using thematic analysis. RESULTS Seven overarching themes captured experiences of using online support communities for TS/TDs. The overwhelming reason for their use was to find accessible support due to a lack of offline face-to-face support. Online support communities were valued sources of informational and emotional support, and also had a positive impact upon helping users’ psychological well-being. Online communities helped provide a space where people with TS/TDs could feel accepted and reduce the social isolation they felt offline. The suggestible nature of tics and being reminded of the challenging nature of TDs were main disadvantages arising from using online support communities, alongside conflict arising within online communities. CONCLUSIONS The findings suggest that online support communities appear to offer valuable informational and emotional support to those living with TS/TD and their families too, especially given the lack of locally available support. This facilitates a sense of community online, which can help users in overcoming long-standing social isolation and aid self-reported improvements in psychosocial well-being. Users reported some drawbacks in engaging with online support communities, such as conflict between different types of users and triggering content, which negatively affected experiences of community participation.

scholarly journals Breastfeeding support at an Australian Breastfeeding Association drop-in service: a descriptive survey

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Elaine S. Burns ◽  
Louise Duursma ◽  
Zoi Triandafilidis
Keyword(s):  
Peer Support ◽  
Online Survey ◽  
Support Service ◽  
Free Access ◽  
Breastfeeding Support ◽  
Face To Face ◽  
Practical Support ◽  
Qualitative Responses ◽  
Descriptive Survey ◽  
Face Support

Abstract Background In Australia, during the early establishment phase of breastfeeding, women can access telephone peer support counselling provided by the Australian Breastfeeding Association (ABA) however options for face-to-face peer support are limited. The known factors which improve ongoing and exclusive breastfeeding include face-to-face support, peer and/or professional support, and trained personnel. This study aimed to examine women’s experiences of accessing one breastfeeding drop-in peer support service provided by trained peer support volunteer counsellors from the ABA. Methods Women who accessed the service were invited, in 2014, to participate in an anonymous online survey which collected both quantitative and qualitative data. Participants were asked about their experiences of breastfeeding support, as well as their experiences of the drop-in service. In total, 53 women completed the online survey, and subsequent analysis generated descriptive statistics and qualitative themes. Results Responses to the survey revealed that women attended the drop-in service with infants ranging in age from less than 1 week through to 12 months of age. Most women reported attending with infants aged 0–8 weeks of age (72%). The predominant presenting problems identified were sore/damaged nipples, difficulties with infant latching to the breast, or concerns about using nipple shields. Analysis of the open text qualitative responses revealed one overarching theme ‘Support to continue breastfeeding’ and four subthemes: ‘feeling listened to and not judged’; ‘emotional support and confidence building’; ‘the importance of face-to-face, practical support’; and ‘the need for ongoing, free access’. Discussion In this study many women were seeking support for ongoing breastfeeding difficulties. Health professionals who had limited breastfeeding knowledge and skills were identified as most unhelpful in providing support with ongoing breastfeeding difficulties. Women valued having access to trained peer counsellors, who had the capacity to provide non-judgemental, face-to-face support; who could sit through a feed; in a space that was ‘safe’; and who could enhance a woman’s confidence with breastfeeding over the course of her full breastfeeding journey. Conclusions Reactive peer support, provided in response to need, at an Australian Breastfeeding Association drop-in service, was described by participants as pivotal to enabling their ongoing breastfeeding.

scholarly journals The factors affecting response rate in survey on well-being among people with foreign origin

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
E Lilja ◽  
A Seppänen ◽  
H Kuusio
Keyword(s):  
Online Survey ◽  
Response Rate ◽  
Age Groups ◽  
Response Rates ◽  
Well Being ◽  
Migrant Population ◽  
Population Surveys ◽  
Cross Sectional ◽  
Factors Affecting ◽  
Face To Face

Abstract Background Previous population surveys among people with foreign background (PFB) in Finland have had successful response rates (62%-66%) when using mainly face-to-face interviews. A cross-sectional population survey (FinMONIK) explored more cost-efficient ways to collect the data on PFB. Methods The data collection was conducted in Finland between May 2018 and January 2019. The random sample consisted of 12 877 (after removing over-coverage) 18-64-year-olds stratified by region. First, a letter containing a link to the online survey with 18 different language options was sent to the participants. After two reminders, the questionnaire was sent twice on paper to the non-respondents. Finally, supplementary phone interviews were carried out by multi-lingual interviewers. All the participants were able to enter in a draw to win gift cards. Results The response rate (RR) for the online survey was 34%. RR was highest for those who had lived in Finland 5 years or less (43%) and lowest among the divorced (23%) and Estonians (27%). The paper questionnaire was mostly preferred by older age groups, increasing the RR of 40-64 year-olds from 31% to 48%. Telephone interviews increased the RR by five percent points, thus making the final RR for the survey 53%. Persons born in the EU and North-America responded the most frequently (58%) whereas RR was lowest amongst the Sub-Saharan African origin migrants (47%). RR was particularly low (42%) for those who had moved to Finland at ages 0-6. Conclusions In surveys conducted amongst PFB, relatively good response rates can be obtained by using alternate methods for gathering data instead of costly and time-consuming face-to-face interview. Age and marital status seemed to affect the preference of survey format. The overall RR varied by country of origin. Key messages A good response rate can be obtained without face-to-face interviews in migrant population surveys. Migrant population surveys can be conducted more efficiently by combining a variety of methods.

scholarly journals Benefit-finding buffers the effects of quarantine on older adults’ mental health during the COVID-19 pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 722-722
Author(s):  
Fan Zhang ◽  
Sheung-Tak Cheng
Keyword(s):  
Older Adults ◽  
Social Isolation ◽  
Online Survey ◽  
Protective Factor ◽  
Negative Impact ◽  
Well Being ◽  
Benefit Finding ◽  
Anxiety Depression ◽  
Moderating Role

Abstract Objective Older adults’ health and well-being may suffer due to prolonged social isolation leading to loneliness and increased stress during the COVID-19 pandemic. The current study aimed to address the role of benefit-finding, defined as the capacity to derive meaning and positive aspects from stressful situations, in older adults’ adaptation to the effects of quarantine. Methods 421 participants aged 50 or above in China participated in an online survey to study the effects of quarantine on loneliness, stress, anxiety, depression and life satisfaction, and the moderating role of benefit-finding. Results The results showed that quarantine was basically unrelated to any outcome. Further analysis showed, however, that the effect of quarantine varied by levels of benefit-finding. Only people with lower benefit-finding reported a higher level of loneliness, perceived stress, anxiety and depression, but no relationships were found at higher benefit-finding. Conclusions The findings extended our understanding of the role of benefit-finding in buffering the negative impact of adversity on older people. By mitigating the effects of prolonged social isolation, benefit-finding served as a protective factor in older people’s adaptation to the sequelae of this pandemic.

scholarly journals Exploring the Therapeutic Affordances of Self-Harm Online Support Communities: An Online Survey of Members

2017 ◽  
Vol 4 (4) ◽  
pp. e44 ◽  
Author(s):  
Neil S Coulson ◽  
Emma Bullock ◽  
Karen Rodham
Keyword(s):  
Online Community ◽  
Online Survey ◽  
Online Support ◽  
Psychosocial Burden ◽  
Self Presentation ◽  
Face To Face ◽  
Positive Coping ◽  
Therapeutic Benefits ◽  
Self Harm ◽  
The Individual

Background A growing number of online communities have been established to support those who self-harm. However, little is known about the therapeutic affordances arising from engagement with these communities and resulting outcomes. Objective The aim of this study was to explore the presence of therapeutic affordances as reported by members of self-harm online support communities. Methods In total, 94 respondents (aged 13-63 years, mean=23.5 years; 94% female) completed an online survey exploring their experiences of engaging with a self-harm online support community. Respondents varied in terms of how long they had been accessing an online community, with 22% (21/94) accessing less than 1 year, 39% (37/94) 1 to 2 years, 14% (13/94) 2 to 3 years, and 24.5% (23/94) more than 3 years. Responses were analyzed using deductive thematic analysis. Results The results of our analysis describe each of the five therapeutic affordances that were present in the data, namely (1) connection, the ability to make contact with others who self-harm for the purposes of mutual support and in so doing reduce feelings of loneliness and isolation; (2) adaptation, that is, how use of online support varies in relation to the personal circumstances of the individual user; (3) exploration, that is, the ability to learn about self-harm and learn about strategies to reduce or stop self-harming behavior; (4) narration, that is, the ability to share experiences, as well as read about the experiences of others; and (5) self-presentation, that is, how and what users present about themselves to others in the online community. Conclusions Our findings suggest that engagement with self-harm online support communities may confer a range of therapeutic benefits for some users, which may serve to minimize the psychosocial burden of self-harm and promote positive coping strategies. In addition, the online nature of the support available may be helpful to those who are unable to access face-to-face support.

scholarly journals Effect of lockdown on activities of daily living in built environment and well-being

2020 ◽  
Author(s):  
Sudhir Kumar Pasala ◽  
Lakshmi Gumpeny ◽  
Madhu Kosuri ◽  
Snehalatha Tippana ◽  
Gumpeny, R Sridhar
Keyword(s):  
Built Environment ◽  
Activities Of Daily Living ◽  
Social Isolation ◽  
Daily Living ◽  
Online Survey ◽  
Well Being ◽  
Sleep Patterns ◽  
Psychological Well Being ◽  
Work Habits ◽  
The Way

In an effort to arrest the spread of COVID-19 infection, a nation-wide lockdown was declared in India in March 2020. To assess how personal built environment affected the citizens in the first few weeks, an explorative online survey was conducted, eliciting responses about the work habits before the lockdown, the psychological well-being, time spent in various activities, characteristics of those who worked from home and sleep patterns. The major difference entailed by thelockdown was a reduction of time and distance to go to their workplace, which was an average of 8.9 km. In terms of diet, subjects who were vegetarian did not experience any difference, unlike those who were non-vegetarians, who reduced the intake of meat. Forced social isolation did not alter the television channels that were viewed. Among those who worked from home, most preferred to work from their bedroom. There was no change in the quality or quantity of sleep during the lockdown. This study in the early weeks of the lockdown documents the way in which individuals lived through it in terms of the built environment at home.

scholarly journals Breastfeeding support at an Australian Breastfeeding Association drop-in service: a descriptive survey

2020 ◽  
Author(s):  
Elaine Burns ◽  
Louise Duursma ◽  
Zoi Triandafilidis
Keyword(s):  
Peer Support ◽  
Online Survey ◽  
Support Service ◽  
Free Access ◽  
Breastfeeding Support ◽  
Face To Face ◽  
Practical Support ◽  
Qualitative Responses ◽  
Descriptive Survey ◽  
Face Support

Abstract BackgroundIn Australia, during the early establishment phase of breastfeeding, women can access telephone peer support counselling provided by the Australian Breastfeeding Association (ABA) however options for face-to-face peer support are limited. The known factors which improve ongoing and exclusive breastfeeding include face-to-face support, peer and/or professional support, and trained personnel. This study aimed to examine women’s experiences of accessing one breastfeeding drop-in peer support service provided by trained peer support volunteer counsellors from the ABA.MethodsWomen who accessed the service were invited, in 2014, to participate in an anonymous online survey which collected both quantitative and qualitative data. Participants were asked about their experiences of breastfeeding support, as well as their experiences of the drop-in service. In total, 53 women completed the online survey, and subsequent analysis generated descriptive statistics and qualitative themes.ResultsResponses to the survey revealed that women attended the drop-in service with infants ranging in age from less than 1 week through to 12 months of age. Most women reported attending with infants aged 0-8 weeks of age (72%). The predominant presenting problems identified were sore/damaged nipples, difficulties with infant latching to the breast, or concerns about using nipple shields. Analysis of the open text qualitative responses revealed one overarching theme ‘Support to continue breastfeeding’ and four subthemes: ‘feeling listened to and not judged’; ‘emotional support and confidence building’; ‘the importance of face-to-face, practical support'; and ‘the need for ongoing, free access’.DiscussionIn this study many women were seeking support for ongoing breastfeeding difficulties. Health professionals who had limited breastfeeding knowledge and skills were identified as most unhelpful in providing support with ongoing breastfeeding difficulties. Women valued having access to trained peer counsellors, who had the capacity to provide non-judgemental, face-to-face support; who could sit through a feed; in a space that was ‘safe’; and who could enhance a woman’s confidence with breastfeeding over the course of her full breastfeeding journey. ConclusionReactive peer support, provided in response to need, at an Australian Breastfeeding Association drop-in service, was described by participants as pivotal to enabling their ongoing breastfeeding.Key words: Breastfeeding, Lactation, Peer support, Peer counsellor, Thematic analysis, Reactive support, Drop-in

scholarly journals Breastfeeding support at an Australian Breastfeeding Association drop-in service: a descriptive survey

2020 ◽  
Author(s):  
Elaine Burns ◽  
Louise Duursma ◽  
Zoi Triandafilidis
Keyword(s):  
Peer Support ◽  
Online Survey ◽  
Support Service ◽  
Free Access ◽  
Breastfeeding Support ◽  
Face To Face ◽  
Practical Support ◽  
Qualitative Responses ◽  
Descriptive Survey ◽  
Face Support

Abstract BackgroundIn Australia, during the early establishment phase of breastfeeding, women can access telephone peer support counselling provided by the Australian Breastfeeding Association (ABA) however options for face-to-face peer support are limited. The known factors which improve ongoing and exclusive breastfeeding include face-to-face support, peer and/or professional support, and trained personnel. This study aimed to examine women’s experiences of accessing one breastfeeding drop-in peer support service provided by trained peer support volunteer counsellors from the ABA.MethodsWomen who accessed the service were invited, in 2014, to participate in an anonymous online survey which collected both quantitative and qualitative data. Participants were asked about their experiences of breastfeeding support, as well as their experiences of the drop-in service. In total, 53 women completed the online survey, and subsequent analysis generated descriptive statistics and qualitative themes.ResultsResponses to the survey revealed that women attended the drop-in service with infants ranging in age from less than 1 week through to 12 months of age. Most women reported attending with infants aged 0-8 weeks of age (72%). The predominant presenting problems identified were sore/damaged nipples, difficulties with infant latching to the breast, or concerns about using nipple shields. Analysis of the open text qualitative responses revealed one overarching theme ‘Support to continue breastfeeding’ and four subthemes: ‘feeling listened to and not judged’; ‘emotional support and confidence building’; ‘the importance of face-to-face, practical support'; and ‘the need for ongoing, free access’.DiscussionIn this study many women were seeking support for ongoing breastfeeding difficulties. Health professionals who had limited breastfeeding knowledge and skills were identified as most unhelpful in providing support with ongoing breastfeeding difficulties. Women valued having access to trained peer counsellors, who had the capacity to provide non-judgemental, face-to-face support; who could sit through a feed; in a space that was ‘safe’; and who could enhance a woman’s confidence with breastfeeding over the course of her full breastfeeding journey. ConclusionReactive peer support, provided in response to need, at an Australian Breastfeeding Association drop-in service, was described by participants as pivotal to enabling their ongoing breastfeeding.

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