![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 65 to 89 of 152. Go back in thread:
Posted by zazenduckie on March 27, 2007, at 20:46:37
In reply to Re: what survey to work on, posted by Dr. Bob on March 27, 2007, at 16:27:31
You seem to have overlooked me :(
Was that intentional?
I feel hurt and confused.
You have not acknowledged my latest input. Or answered my questions.
Am I counted among your "5" who are participating? Perhaps the server deleted my name? Please clear this up. Thanks :)
> > I think I'd enjoy working on
> > 1a
> > 2abc[d]fgh
> > 3a
> > 4a
> > 5c
> > 7a
> >
> > Llurpsie_Noodle
>
> > > You could look at the role of those who post frequently and what types of frequent posters there are ... or how they do or don't sequester themselves or show interest in one or several different boards.
> >
> > #1.
> >
> > > How or why people started posting after lurking, or withdrew to luring is also sort of an interesting question.
> >
> > #2.
> >
> > > There are lots and lots of topics re: group dynamics that I find very interesting. Eg why are there periods of very few posts, and other times of many posts? Is the board beginning to decline in attracting interest by posters? if so, why?
> > >
> > > Honore
> >
> > #1, too.
>
> > If we do any kind of survey [#2], I don't mind keeping track of the responses. And I still have my student version of SPSS, so as long as there aren't more than 1500 answers to a survey (I doubt there would be), then I can even run whatever statistics we want in seconds.
> >
> > thuso
>
> > I'd be interested in working on 2a, 2d, 2f, i.e. surveys.
> >
> > vwoolf
>
> OK, it looks like there are 5 of us and we'd all be interested in working on a survey. I do think that would be a good way to start. The particular topics that were mentioned were:
>
> a. how people define their disorders or illnesses-psychological, biological, combination, neither etc.
> c. level of participation/lurking
> d. number of symptoms/level of functioning
> f. what factors cause people to post here rather than discuss med problems with their pdocs or other physicians
>
> Can we decide on one of those?
>
> Bob
Posted by zazenduckie on March 27, 2007, at 21:03:19
In reply to Dr Bob you forgot me again » Dr. Bob, posted by zazenduckie on March 27, 2007, at 20:46:37
Bob several other people besides me have also expressed interest and you left them out too. Not even a word of thanks.
I am really shocked. I know I shouldn't be.
Posted by Llurpsie_Noodle on March 27, 2007, at 21:12:28
In reply to Civility?, posted by zazenduckie on March 27, 2007, at 21:03:19
Zazenduckie,
I feel just awful that Bob seems to have overlooked you. I didn't though. I read everyone of your posts to this thread with interest. I think you have good ideas, but I'm not the boss around here...thank you for speaking up for yourself. You're not the only one who was overlooked either. I think only one of my roughly 30ish ideas made it into Dr. Bob's list. so many interesting questions. so little time...
If you think Dr. Bob has forgotten you, please know that there was a bottle of wine ordered at the last babble-get-together and the bottle had a duck on it, and we all thought of you.
well, sorry if it's a small consolation prize. I just don't know what to say.
-Ll
Posted by Llurpsie_Noodle on March 27, 2007, at 21:16:04
In reply to Re: what survey to work on, posted by Dr. Bob on March 27, 2007, at 16:27:31
> a. how people define their disorders or illnesses-psychological, biological, combination, neither etc.
> c. level of participation/lurking
> d. number of symptoms/level of functioning
> f. what factors cause people to post here rather than discuss med problems with their pdocs or other physicians
>
> Can we decide on one of those?
>
> Bobthe short answer is "no" the long answer is I'd be interested in too many things to start anywhere in particular. Call me "flexible"- I think they are all good issues deserving empirical investigation.
Posted by zazenduckie on March 27, 2007, at 21:44:56
In reply to Re: Civility? » zazenduckie, posted by Llurpsie_Noodle on March 27, 2007, at 21:12:28
>
> thank you for speaking up for yourself. You're not the only one who was overlooked either. I think only one of my roughly 30ish ideas made it into Dr. Bob's list. so many interesting questions. so little time...
>
http://dr-bob.org/babble/admin/20061202/msgs/710014.htmlWell idea (a) is a direct quote from a post of mine. So my idea made it but bob for reasons known to him and possibly his therapist ;-) left me out.
> well, sorry if it's a small consolation prize. I just don't know what to say.
>
LLurpsie I didn't think of it as a "prize". Is that how you see it? That you won a prize by being chosen by Bob? I thought we were volunteering to help Bob not that we were competing for his favour. I wouldn't want to be in that competition. I thought it was just something for anyone who was willing to help out. I don't understand why Bob wants to exclude people. It's like when he had three volunteers to be deputies and after the fact he announced that he was going to select two after they trained! Seems like a pattern here! Please at least do me the favor of voting for someone else's idea not mine (a). I don't think my ideas should be invited to the party without me!
Posted by Honore on March 28, 2007, at 3:28:17
In reply to Re: what survey to work on, posted by Dr. Bob on March 27, 2007, at 16:27:31
I guess if I were to choose one of the topics listed, I'd go with c) the reasons for lurking versus participation, or how/when/why posters move from one to the other, and possibly back again.
Honore
Posted by madeline on March 28, 2007, at 6:24:22
In reply to Re: what survey to work on, posted by Dr. Bob on March 27, 2007, at 16:27:31
I would be interested in helping on the med board survey - I don't know if you included me or not in the list.
Maddie
Posted by Llurpsie_Noodle on March 28, 2007, at 7:20:03
In reply to Re: Civility? » Llurpsie_Noodle, posted by zazenduckie on March 27, 2007, at 21:44:56
>
> >
> > thank you for speaking up for yourself. You're not the only one who was overlooked either. I think only one of my roughly 30ish ideas made it into Dr. Bob's list. so many interesting questions. so little time...
> >
> http://dr-bob.org/babble/admin/20061202/msgs/710014.html
>
> Well idea (a) is a direct quote from a post of mine. So my idea made it but bob for reasons known to him and possibly his therapist ;-) left me out.
Good to know. One of my profs is fond of saying that the smartest people can't remember where they got their ideas...>
> > well, sorry if it's a small consolation prize. I just don't know what to say.
> >
> LLurpsie I didn't think of it as a "prize". Is that how you see it? That you won a prize by being chosen by Bob?Barf. I don't want to be "picked by" anyone.
Please allow me to rephrase
"I'm sorry if it's a small consolation"
>I thought we were volunteering to help Bob not that we were competing for his favour. I wouldn't want to be in that competition.nor would I
>I thought it was just something for anyone who was willing to help out. I don't understand why Bob wants to exclude people. It's like when he had three volunteers to be deputies and after the fact he announced that he was going to select two after they trained! Seems like a pattern here! Please at least do me the favor of voting for someone else's idea not mine (a). I don't think my ideas should be invited to the party without me!
Can you crash the party? If Bob's invitation were that exclusive I doubt he would have posted it publicly. I think he wants feedback at this point. I'm sorry that I've never gotten to know you personally Zazenduckie, and so don't know if you've ever worked on a survey or research project before. Like most projects there are some phases when broad input from a variety of people is helpful and then there are other phases where more concentrated effort by a few people helps move things along faster. I hope that Dr. Bob was trying to communicate that he's ready to actually start working on something, and that the brainstorming phase is coming to an end.
I'm going to get back to working on the references in the text of my dissertation. I *do* try very hard to give people credit for their original thoughts, and I think it's a mistake for Bob not to adopt some time of reference system for this phase of brainstorming.
According to some posters, ideas should be given credit where credit is due (Zazenduckie, 3/27/07, admin; Llurpsienoodle, 3/28/07,admin)
kind of like that? (knowing of course that I left out the references from January and February when your ideas were "inadvertently?" misappropriated without due credit. this bibiliographer is sleepy.
later,
-Ll
Posted by zazenduckie on March 28, 2007, at 13:00:44
In reply to references » zazenduckie, posted by Llurpsie_Noodle on March 28, 2007, at 7:20:03
Like most projects there are some phases when broad input from a variety of people is helpful and then there are other phases where more concentrated effort by a few people helps move things along faster. I hope that Dr. Bob was trying to communicate that he's ready to actually start working on something, and that the brainstorming phase is coming to an end.Well brainstorming is my talent so perhaps my work is done here.
>>
> According to some posters, ideas should be given credit where credit is due (Zazenduckie, 3/27/07, admin; Llurpsienoodle, 3/28/07,admin)
PLEASE PLEASE NO that isn't the point at all. (Although a mention of zazenduckie would surely add luster to any academic effort!!!)
Nevermind. I'm far too idealistic or out of touch or something.Thanks for reading my post and replying. And thanks for offering to help Bob! That was very generous of you. I hope you enjoy it.
Posted by Llurpsie_Noodle on March 28, 2007, at 13:28:06
In reply to Re: references » Llurpsie_Noodle, posted by zazenduckie on March 28, 2007, at 13:00:44
I guess I misunderstood you. I'm sorry.
I'm writing zazenduckie into a draft of my dissertation. look how it glows :)
-Ll
Posted by zazenduckie on March 28, 2007, at 18:25:21
In reply to Re: more research here, posted by wishingstar on December 1, 2006, at 15:15:56
Did you overlook another volunteer Bob?
>
> I dont have any particularly bright ideas on research topics at this moment, but I'd like to volunteer to be involved in this if you do decide to do any work regarding the boards.
Posted by wishingstar on March 31, 2007, at 18:36:45
In reply to what about wishing star? dr bob?, posted by zazenduckie on March 28, 2007, at 18:25:21
Posted by vwoolf on April 12, 2007, at 11:02:02
In reply to Re: what survey to work on, posted by Dr. Bob on March 27, 2007, at 16:27:31
I think that of the four surveys, it might make most sense to choose one that specifically investigates the nature of online support groups. This could be an investigation either into the kind of users and their mental health, or into their reasons for using the site. Or both. So possibly d. i.e. "number of symptoms/level of functioning" or f, i.e. "what factors cause people to post here rather than discuss med problems with their pdocs or other physicians". I would find both of these extremely interesting.
Posted by Honore on April 21, 2007, at 10:41:07
In reply to Re: what survey to work on, posted by vwoolf on April 12, 2007, at 11:02:02
Are we still planning to do research?
Has anything been done in this area?
I'd still like to be involved.
Honore
Posted by zazenducke on April 22, 2007, at 0:09:13
In reply to Re: what survey to work on, posted by Dr. Bob on March 27, 2007, at 16:27:31
Bob if you intend to use these professional young women to meet your need for research, you need to take this thread off the board and conduct that research in private. I am sure you know that it is possible to figure out who some posters are by the posts which you refuse to remove.
And if you take these women to professional meetings with you won't you be outing them to their potential future colleagues?
It would be fun to watch yall working here on the thread but I don't think it is a good idea at all!
Why didn't you think of this yourself?
Posted by LlurpsieNoodle on April 22, 2007, at 9:16:19
In reply to Privacy concerns Bobbo » Dr. Bob, posted by zazenducke on April 22, 2007, at 0:09:13
yes,
I'm kind of concerned about how I could possible end up with an acknowledgement of my participation in this research without identifying my IRL identiybabblers would know my IRL and
IRL would know my babble identity.this concerns me too zazenducke.
i wonder what's got bob so busy that he lets this sit on the back burner for so long.
well. maybe he's jut waiting for someone to take the first step?
I dunno
-Ll
Posted by Dr. Bob on May 1, 2007, at 8:20:25
In reply to Re: Privacy concerns Bobbo » zazenducke, posted by LlurpsieNoodle on April 22, 2007, at 9:16:19
> I'd be interested in too many things to start anywhere in particular. Call me "flexible"- I think they are all good issues deserving empirical investigation.
>
> Llurpsie_Noodle> I guess if I were to choose one of the topics listed, I'd go with c) the reasons for lurking versus participation, or how/when/why posters move from one to the other, and possibly back again.
>
> Honore> I would be interested in helping on the med board survey
>
> Maddie> I think that of the four surveys, it might make most sense to choose one that specifically investigates the nature of online support groups. This could be an investigation either into the kind of users and their mental health, or into their reasons for using the site. Or both. So possibly d. i.e. "number of symptoms/level of functioning" or f, i.e. "what factors cause people to post here rather than discuss med problems with their pdocs or other physicians". I would find both of these extremely interesting.
>
> vwoolfI agree, they're all good issues, but we do need to start somewhere. If we consider (a) eliminated, that leaves:
c. the reasons for lurking versus participation, or how/when/why posters move from one to the other, and possibly back again
d. number of symptoms/level of functioning
f. what factors cause people to post here rather than discuss med problems with their pdocs or other physiciansMaddie, what do you think? Thuso, are you still here?
--
> You seem to have overlooked me :(
>
> Was that intentional?
>
> I feel hurt and confused.
>
> zazenduckieSorry, but you didn't say you were willing to work on any of the proposals on the list:
http://www.dr-bob.org/babble/admin/20061228/msgs/721552.html
http://www.dr-bob.org/babble/admin/20070123/msgs/727958.html--
> I'm kind of concerned about how I could possible end up with an acknowledgement of my participation in this research without identifying my IRL identiy
>
> babblers would know my IRL and
> IRL would know my babble identity.
>
> Llurpsie_NoodleHmm, good question. I guess you could be acknowledged just as Llurpsie_Noodle and if someone IRL asked who you were, it would be up to you whether you disclosed that to them. But either way, I could confirm that you were one of the contributors...
Bob
Posted by Declan on May 1, 2007, at 14:37:14
In reply to This board, she is a woman?, posted by zazenduckie on January 27, 2007, at 16:03:23
An obvious difference not mentioned in the article is that men will generally not reach out for help whereas women will
Posted by Declan on May 1, 2007, at 14:43:18
In reply to This board, she is a woman?, posted by zazenduckie on January 27, 2007, at 16:03:23
>There has been a slight increase in male posters since the first year you report statistics. What would account for that?
Changes in male identity and sexuality.
Posted by zazenducke on May 3, 2007, at 8:37:19
In reply to Re: This board, she is a woman? » zazenduckie, posted by Declan on May 1, 2007, at 14:43:18
I also forgot that women are twice as likely as men to be depressed. That's pretty much the same as people registering.
Posted by thuso on May 5, 2007, at 22:12:33
In reply to Re: what survey to work on, posted by Dr. Bob on May 1, 2007, at 8:20:25
> I agree, they're all good issues, but we do need to start somewhere. If we consider (a) eliminated, that leaves:
>
> c. the reasons for lurking versus participation, or how/when/why posters move from one to the other, and possibly back again
> d. number of symptoms/level of functioning
> f. what factors cause people to post here rather than discuss med problems with their pdocs or other physicians
>I like (c) and (f). Those are two topics I'd have a lot to say about and I'm sure others would also.
> Maddie, what do you think? Thuso, are you still here?
>I'm still here. Been down and out because of 2 surgeries. Well, there's that and also the fact that I am one of those who would fall under (c). :-)
Posted by Honore on May 6, 2007, at 10:07:14
In reply to Re: what survey to work on » Dr. Bob, posted by thuso on May 5, 2007, at 22:12:33
Well, not that I'm trying to vote twice, since I already voted. But I'm still more up for c) than the other two. I'll work on any of them, of course.
Is any progress being made on deciding on one rather than the others? Is there any timetable for getting out of ... I mean getting down to work?
Honore
Posted by vwoolf on May 6, 2007, at 10:44:11
In reply to Re: what survey to work on, posted by Honore on May 6, 2007, at 10:07:14
I'm happy to work on any or all of the three. I think it would be good to have a decision soon so that we can start defining more clearly what we are going to study and how. It seems quite difficult to find consensus online, but it sounds as if we are all prepared to contribute around these topics. Perhaps Dr Bob, with all the weight of his authority, should decide?
Posted by Dr. Bob on May 7, 2007, at 7:36:06
In reply to Re: what survey to work on » Dr. Bob, posted by thuso on May 5, 2007, at 22:12:33
> I like (c) and (f). Those are two topics I'd have a lot to say about and I'm sure others would also.
OK, if we consider (d) eliminated, too, that leaves:
c. the reasons for lurking versus participation, or how/when/why posters move from one to the other, and possibly back again
f. what factors cause people to post here rather than discuss med problems with their pdocs or other physiciansMaddie, what do you think? Llurpsie, would you be more interested in one of these than the other?
> I am one of those who would fall under (c). :-)
>
> thusoMe, too...
Bob
Posted by Dr. Bob on May 7, 2007, at 7:43:51
In reply to Re: what survey to work on, posted by Dr. Bob on May 7, 2007, at 7:36:06
Hi, everyone,
FYI, I did a quick search not too long ago and didn't see anything about (c) or (f). Appended are what I thought were the relevant articles that had abstracts.
Bob
***************************
Database: Ovid MEDLINE(R) <1996 to March Week 4 2007>
Search Strategy:
--------------------------------------------------------------------------------
3 exp *Internet/ (12341)
9 exp *Self-Help Groups/ (1604)
10 3 and 9 (103)***************************
<1>
Unique Identifier
17158833
Authors
Guise J. Widdicombe S. McKinlay A.
Title
'What is it like to have ME?': the discursive construction of ME in computer-mediated communication and face-to-face interaction.
Source
Health: an Interdisciplinary Journal for the Social Study of Health, Illness & Medicine. 11(1):87-108, 2007 Jan.
Abstract
ME (Myalgic Encephalomyelitis) or CFS (chronic fatigue syndrome) is a debilitating illness for which no cause or medical tests have been identified. Debates over its nature have generated interest from qualitative researchers. However, participants are difficult to recruit because of the nature of their condition. Therefore, this study explores the utility of the internet as a means of eliciting accounts. We analyse data from focus groups and the internet in order to ascertain the extent to which previous research findings apply to the internet domain. Interviews were conducted among 49 members of internet groups (38 chatline, 11 personal) and 7 members of two face-to-face support groups. Discourse analysis of descriptions and accounts of ME or CFS revealed similar devices and interactional concerns in both internet and face-to-face communication. Participants constructed their condition as serious, enigmatic and not psychological. These functioned to deflect problematic assumptions about ME or CFS and to manage their accountability for the illness and its effects.<2>
Unique Identifier
17158844
Authors
Gooden RJ. Winefield HR.
Title
Breast and prostate cancer online discussion boards: a thematic analysis of gender differences and similarities.
Source
Journal of Health Psychology. 12(1):103-14, 2007 Jan.
Abstract
Online discussion boards are being used increasingly by cancer survivors, highlighting the need for understanding this potentially supportive communication process. Two online discussion boards, a prostate group and a breast cancer group, were studied using mixed methodology of both Grounded Theory and a quasi-numerative approach. Both men's and women's dialogues fell under two themes, information support and emotional support. Information support accounted for 60 per cent of communications in women and 64 per cent in men and emotional support 40 per cent in women and 36 per cent in men. However, there were gender differences in the language styles of these communications. Further research is recommended to understand adequately the emotional content within women's and men's dialogues in the context of breast and prostate cancer discussion boards.<3>
Unique Identifier
16039031
Authors
Radin P.
Title
"To me, it's my life": medical communication, trust, and activism in cyberspace.
Source
Social Science & Medicine. 62(3):591-601, 2006 Feb.
Abstract
This paper studies the conversations and activities of an online support group for breast cancer sufferers and survivors and their supporters. Using communications medium theory and social capital theory, it examines the mundane and profound exchanges, the poignant self-disclosures, the creative expressions of solidarity, and the minor but not-insignificant political actions of people--initially strangers--who come together as a 'virtuous circle,' not only to assist with medical issues but also to meet emotional and even material needs. Sponsored by the Canadian nonprofit organization Breast Cancer Action Nova Scotia (BCANS), this virtual community has logged over a half million messages since 1996. Not every BCANS participant is an activist--many are just trying to grapple with their disease--but some find ways to shatter the professional "information monopoly," and to press for healthcare improvements. The study illustrates the scope, passion, and complexity of peer-to-peer medical communication in a virtual environment that promotes "thick trust". BCANS participants discuss with candor, warmth and even humor such painful topics as death and dying and the crises in intimate relationships brought about by a terminal illness. The sharing of confidences and fears enables participants to pool their 'collective intelligence' about many things, from how to cope with swelling, to how to think about end-of-life issues, to how to improve social policy.<4>
Unique Identifier
17162454
Authors
Nevonen L. Mark M. Levin B. Lindstrom M. Paulson-Karlsson G.
Title
Evaluation of a new Internet-based self-help guide for patients with bulimic symptoms in Sweden.
Source
Nordic Journal of Psychiatry. 60(6):463-8, 2006.
Abstract
The current study evaluated a new Internet-based self-help guide based on cognitive-behavioural therapy for patients with bulimic symptoms. Thirty-eight participants from a waiting list at an eating-disorder outpatient unit were assessed pre-treatment, post-treatment and at a 2-month follow-up using the Rating of Anorexia and Bulimia interview-revised version, an anamnesis questionnaire, the Eating Disorder Inventory-2 (EDI-2) and Symptom Check List-90-Revised (SCL-90R). The SCL-90R Global Severity Index and most EDI-2 subscales showed significant differences from pre-to post-treatment and the 2-month follow-up, apart from ineffectiveness, impulse regulation and social insecurity. Expert ratings revealed a significant reduction in vomiting, dietary restraints and weight phobia, with the exception of binge eating from pre-treatment to the 2-month follow-up. Exercise increased significantly, indicating that participants changed their method of compensation. An Internet-based self-help guide for bulimic symptoms is a promising new tool and can be used effectively as the first step in a stepped-care model. Further evaluations with randomized controlled trials are necessary.<7>
Unique Identifier
16775019
Authors
Seale C.
Title
Gender accommodation in online cancer support groups.
Source
Health: an Interdisciplinary Journal for the Social Study of Health, Illness & Medicine. 10(3):345-60, 2006 Jul.
Abstract
The postings made to Internet forums by relatives and friends of people with breast and prostate cancer are described. Women post very frequently on the prostate cancer forum and assume a communication style that is similar to women elsewhere, prioritizing emotional forms of communication over the informational forms preferred by men and showing only mild signs of accommodation to a male style. Men on the breast cancer forum are in a minority and are often responding to the current or anticipated loss of a partner. Their communication behaviour is radically different from that required by dominant conceptions of masculinity. They prioritize emotional communication and the emotional welfare of family members. They experience this new form of communication as unsettling to their conceptions of traditional masculinity. Internet cancer support groups thus favour a form and content of communication generally associated with women's culture.<17>
Unique Identifier
16139466
Authors
Winefield HR.
Title
Support provision and emotional work in an Internet support group for cancer patients.
Source
Patient Education & Counseling. 62(2):193-7, 2006 Aug.
Abstract
OBJECTIVE: The study examined the content and frequency of messages to an Internet support group, using a conceptual framework based on support-giving and emotional work. The main questions addressed concerned what correspondents seem to be gaining from their involvement and whether the high-frequency correspondents differ motivationally from the lower-frequency correspondents. METHODS: Messages to an Internet support group for women with breast cancer were collected over 12 months. The number of contributions written by individual correspondents could be determined. Messages were reliably coded for their main themes in terms of seeking or providing support. RESULTS: The majority of correspondents (94%) wrote fewer than 10 messages. Two high-frequency correspondents emerged whose messages significantly less often referred to seeking and more often to providing support than did the messages of the less-frequent correspondents. These volunteer emotion workers both reported gaining personal satisfaction from their role. CONCLUSION: The high-frequency correspondents act as informal volunteer emotion workers for the other users, and valuably supplement the role of the group's initiators. Further research is needed on how to amplify the psychological rewards for volunteer emotion workers in online support groups for adults with cancer. PRACTICE IMPLICATIONS: Volunteer assistants in electronic groups may be crucial to the sustainability of online support initiatives.<19>
Unique Identifier
16513686
Authors
Esquivel A. Meric-Bernstam F. Bernstam EV.
Title
Accuracy and self correction of information received from an internet breast cancer list: content analysis.[see comment].
Comments
Comment in: BMJ. 2006 Apr 22;332(7547):925-6; PMID: 16627491, Comment in: BMJ. 2006 May 6;332(7549):1095; PMID: 16675829, Comment in: BMJ. 2006 May 6;332(7549):1095; PMID: 16675828
Source
BMJ. 332(7547):939-42, 2006 Apr 22.
Abstract
OBJECTIVES: To determine the prevalence of false or misleading statements in messages posted by internet cancer support groups and whether these statements were identified as false or misleading and corrected by other participants in subsequent postings. DESIGN: Analysis of content of postings. SETTING: Internet cancer support group Breast Cancer Mailing List. MAIN OUTCOME MEASURES: Number of false or misleading statements posted from 1 January to 23 April 2005 and whether these were identified and corrected by participants in subsequent postings. RESULTS: 10 of 4600 postings (0.22%) were found to be false or misleading. Of these, seven were identified as false or misleading by other participants and corrected within an average of four hours and 33 minutes (maximum, nine hours and nine minutes). CONCLUSIONS: Most posted information on breast cancer was accurate. Most false or misleading statements were rapidly corrected by participants in subsequent postings.<20>
Unique Identifier
16361029
Authors
Seale C. Ziebland S. Charteris-Black J.
Title
Gender, cancer experience and internet use: a comparative keyword analysis of interviews and online cancer support groups.
Source
Social Science & Medicine. 62(10):2577-90, 2006 May.
Abstract
A new method, comparative keyword analysis, is used to compare the language of men and women with cancer in 97 research interviews and two popular internet based support groups for people with cancer. The method is suited to the conjoint qualitative and quantitative analysis of differences between large bodies of text, an alternative to the 'code and retrieval' approach used in much thematic analysis of qualitative materials. Web forums are a rich source of data about illness experience and gender differences. Marked differences in the performance of gender are evident. These differences follow linguistic and other behavioural patterns (such as social network differences) established in other contexts. Men with prostate cancer indicate in research interviews that they are more likely to seek information on the internet; women with breast cancer that they are more likely to seek social and emotional support. Men's concerns cluster around treatment information, medical personnel and procedures. Their experience of disease is more localised on particular areas of the body, while women's experience is more holistic. Women's forum postings orientate much more towards the exchange of emotional support, including concern with the impact of illness on a wide range of other people. Women's use of superlatives as well as words referring to feelings indicate their enactment of greater emotional expressivity. Web forums are platforms for an intensification of men's knowledge gathering activities. Web forums, though actually quite publicly visible, appear to be subjectively experienced by both sexes as relatively private places for the exchange of intimate personal information. The 'privacy' of the breast cancer forum facilitated interactions found in other studies to be characteristic of women's friendship groups.<22>
Unique Identifier
16548704
Authors
Shaw BR. Hawkins R. McTavish F. Pingree S. Gustafson DH.
Title
Effects of insightful disclosure within computer mediated support groups on women with breast cancer.
Source
Health Communication. 19(2):133-42, 2006.
Abstract
Written expression about emotionally traumatic events is associated with physical and mental health benefits, and this study examines how insightful disclosure within a computer-mediated support group for women with breast cancer affects breast cancer-related concerns, emotional well-being, and self-reported physical well-being. Using a word counting program that notes the percentage of words related to various linguistic dimensions, this research specifically examined the effects of insightful disclosure written within these groups. Surveys were administered just before group access and then 2 months and 5 months later. Insightful disclosure improved emotional well-being and reduced negative mood but did not influence breast cancer-related concerns or self-reported physical well-being. Despite the common and frequent use of computer-mediated social support (CMSS) groups for people coping with health concerns, very little research to date has quantitatively tested the effects of participating in CMSS groups, and this is among the first published studies to quantitatively link any specific activity within a CMSS group to any specific outcomes. Implications for improving psychosocial interventions for people with health concerns are discussed, and future research objectives are suggested.<23>
Unique Identifier
16518439
Authors
Nolan MT. Hodgin MB. Olsen SJ. Coleman J. Sauter PK. Baker D. Stanfield C. Emerling A. Hruan RH.
Title
Spiritual issues of family members in a pancreatic cancer chat room.
Source
Oncology Nursing Forum. Online. 33(2):239-44, 2006 Mar.
Abstract
PURPOSE/OBJECTIVES: To describe spiritual issues addressed by users of a pancreatic cancer informational Web site. DESIGN: Qualitative, descriptive. SETTING: The patient and family chat room of Johns Hopkins Hospital's pancreatic cancer Web site. SAMPLE: 600 postings on the pancreatic cancer Web site. METHODS: Identification of categories and themes in Web postings using the constant comparison method of content analysis. MAIN RESEARCH VARIABLES: Spirituality, relationship of the person posting a message (poster) to the person with cancer. FINDINGS: Relationship of the poster to the person with pancreatic cancer was explicit in 68% (n = 410) of the 600 postings, and 83% of those 410 postings indicated that the poster was a family member. Issues of spirituality appeared in 19% (n = 114) of the 600 postings and addressed four themes: spiritual convergence, reframing suffering, hope, and acceptance of the power of God and eternal life. Six percent of postings were by family members reporting on the death of their loved ones, suggesting that the site also served a bereavement function. CONCLUSIONS: Family members of patients with pancreatic cancer sought and received spiritual comfort in a variety of forms in an Internet-based cancer chat room. IMPLICATIONS FOR NURSING: Nurse developers of cancer information Web sites should periodically assess how the sites are being used and apply the information to the refinement of the sites to better meet user needs. Further study is needed to develop and evaluate cancer Web sites as an evolving medium for providing spiritual support to family members of patients with life-threatening forms of cancer.<25>
Unique Identifier
16436908
Authors
Shaw BR. Hawkins R. Arora N. McTavish F. Pingree S. Gustafson DH.
Title
An exploratory study of predictors of participation in a computer support group for women with breast cancer.
Source
CIN: Computers, Informatics, Nursing. 24(1):18-27, 2006 Jan-Feb.
Abstract
This study examined what characteristics predict participation in online support groups for women with breast cancer when users are provided free training, computer hardware, and Internet service removing lack of access as a barrier to use. The only significant difference between active and inactive participants was that active users were more likely at pretest to consider themselves active participants in their healthcare. Among active participants, being white and having a higher energy level predicted higher volumes of writing. There were also trends toward the following characteristics predictive of a higher volume of words written, including having a more positive relationship with their doctors, fewer breast cancer concerns, higher perceived health competence, and greater social/family well-being. Implications for improving psychosocial interventions for women with breast cancer are discussed, and future research objectives are suggested.<26>
Unique Identifier
16390834
Authors
Lieberman MA. Winzelberg A. Golant M. Wakahiro M. DiMinno M. Aminoff M. Christine C.
Title
Online support groups for Parkinson's patients: a pilot study of effectiveness.
Source
Social Work in Health Care. 42(2):23-38, 2005.
Abstract
(A) Will PD patients participate in online, professionally led support groups? (B) What are their demographics characteristics and PD severity? (C) Are such groups beneficial? (D) Should patients be grouped for stage of disease? Depression and quality of life were assessed. Sixty-six people were assigned to a 20-week, professionally facilitated online support group. Participants were assigned to one of 2 group types based on patient similarity: homogeneous and heterogeneous. PD patients appear to readily enroll in online groups. Compared to PD patients in traditional support groups, the online were younger, less depressed and had higher quality of life. Dropouts (39%) were high. Overall, patients showed improved quality of life; no overall changes were observed in depression. Participants in the homogenous groups reported a significant decrease in depression.<28>
Unique Identifier
16332169
Authors
Coulson NS.
Title
Receiving social support online: an analysis of a computer-mediated support group for individuals living with irritable bowel syndrome.
Source
Cyberpsychology & Behavior. 8(6):580-4, 2005 Dec.
Abstract
In recent years, the rapid expansion in Internet access and computer-mediated communication has fostered new opportunities for individuals with health-related concerns to participate in supportive communication within a network of individuals dealing with similar issues. The aim of this study was to examine the nature of socially supportive communication that took place within a computer-mediated support network for individuals affected by irritable bowel syndrome. Using deductive thematic analysis, 572 posted messages were examined with reference to five main categories of social support (i.e., emotional, esteem, information, network, and tangible assistance). The analysis suggests that the primary function of this group was the communication of informational support, notably within the areas of symptom interpretation, illness management, and interaction with health care professionals.<30>
Unique Identifier
16279878
Authors
Haker H. Lauber C. Rossler W.
Title
Internet forums: a self-help approach for individuals with schizophrenia?.
Source
Acta Psychiatrica Scandinavica. 112(6):474-7, 2005 Dec.
Abstract
OBJECTIVE: To study if and how online self-help forums for individuals with schizophrenia are used. METHOD: We analysed 1200 postings of 576 users in 12 international schizophrenia forums regarding communicative skills [fields of interest and self-help mechanisms (SHM)]. RESULTS: The forums were predominantly used by affected individuals, few relatives or friends. The fields of interest of the users concern daily problems of the illness like symptoms and emotional involvement with the illness. Self-help mechanisms mostly used are disclosure and providing information. Emotional interaction e.g. empathy or gratitude were comparatively rare. CONCLUSION: Individuals suffering from schizophrenia participate in online self-help forums using the same SHM, discussing similar topics as do individuals with other psychiatric disorders as well as not affected relatives and caregivers. Therefore, this tool seems to be a useful approach to cope with alienation and isolation, albeit only a small number of schizophrenia forums are found in the Internet.<31>
Unique Identifier
16225689
Authors
Bruwer BR. Stein DJ.
Title
A survey of participants in two internet support groups for people with hair-pulling.
Source
BMC Psychiatry. 5:37, 2005.
Abstract
BACKGROUND: A substantial number of patients suffering from psychological problems or psychiatric disorders have turned to internet support groups for help. This paper reports on the perceived effectiveness of trichotillomania (TTM) internet support groups for people suffering from hair-pulling. METHODS: A questionnaire was sent via e-mail to all subscribers of two mailing lists devoted to TTM, each of which takes a somewhat different approach to the condition. The questionnaire addressed the possible benefits and problems associated with belonging to a TTM virtual support group. RESULTS: Subscribers had similar demographic features as clinical samples of trichotillomania patients. Subscribers to both internet lists found them helpful in terms of feeling supported and in obtaining information. The different approaches to TTM on the two lists were associated with differences in treatments attempted by participants. CONCLUSION: Internet support groups can potentially contribute to increasing awareness about and knowledge of psychiatric disorders such as TTM, as well as to their management. Nevertheless, additional effort is required to ensure that subscribers are able to make informed, evidence-based decisions.<34>
Unique Identifier
16176962
Authors
Lieberman MA. Goldstein BA.
Title
Self-help on-line: an outcome evaluation of breast cancer bulletin boards.
Source
Journal of Health Psychology. 10(6):855-62, 2005 Nov.
Abstract
Many breast cancer patients find help from on-line self-help groups, consisting of self-directed, asynchronous, bulletin boards. These have yet to be empirically evaluated. Upon joining a group and 6 months later, new members (N=114) to breast cancer bulletin boards completed measures of depression (CES-D), growth (PTGI) and psychosocial wellbeing (FACT-B). Improvement was statistically significant on all three measures. This serves as a first validation of Internet bulletin boards as a source of support and help for breast cancer patients. These boards are of particular interest because they are free, accessible and support comes from peers and not from professional facilitators.<35>
Unique Identifier
16060721
Authors
Hoch D. Ferguson T.
Title
What I've learned from E-patients.
Source
PLoS Medicine / Public Library of Science. 2(8):e206, 2005 Aug.<36>
Unique Identifier
16015220
Authors
Dickerson SS.
Title
Technology--patient interactions: Internet use for gaining a healthy context for living with an implantable cardioverter defibrillator.
Source
Heart & Lung. 34(3):157-68, 2005 May-Jun.
Abstract
OBJECTIVE: The purpose of this study was to understand the practical knowledge gained from Internet use by implantable cardioverter defibrillator (ICD) recipients through hermeneutic interpretation of narrative stories. METHODS: The study took place through an online virtual focus group and e-mail interviews. Thirteen participants attended the ongoing 4-week virtual focus group, and 8 followed up with individual interviews. RESULTS: Five related themes and 1 constitutive pattern emerged. Themes included getting past fear with knowledge and support; gaining context through a window to the future; Internet as mountain of information; and Internet as social interaction and becoming informed consumers. The constitutive pattern was gaining a context for living a healthy life with an ICD. IMPLICATIONS: Providers must be aware of the value added when patients use the Internet for self-care management of their chronic illness. Through information searches and sharing stories, patients gain insight into possibilities and potential outcomes of living with an ICD.<38>
Unique Identifier
15829472
Authors
Lasker JN. Sogolow ED. Sharim RR.
Title
The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailinglist.
Source
Journal of Medical Internet Research. 7(1):e10, 2005.
Abstract
BACKGROUND: This study focuses on the role of an Internet-based group for people who have an autoimmune liver disease, primary biliary cirrhosis. Primary biliary cirrhosis is a relatively rare disease, affects primarily women in their 40's and older, and is not well understood. The PBCers Organization (PBC stands for primary biliary cirrhosis) provides electronic mailinglists (listservs) and informational resources for those with primary biliary cirrhosis. OBJECTIVES: (1) to identify the issues of greatest importance to those posting to the listserv, specifically the relative importance of biomedical, socioemotional, and organizational/systems messages; (2) to compare frequency and content of posts by people at different stages of disease; (3) to identify how people with primary biliary cirrhosis represent the psychosocial challenges and dilemmas (role and identity change, uncertainty, and stigma) identified in the social-scientific literature as key elements of the experience of chronic disease. METHODS: The paper is based on content analysis of messages posted during two months to the Daily Digest listserv for people who have primary biliary cirrhosis. To analyze the posts, we developed a coding system with three major categories--biomedical, socioemotional, and systems/organizations--and 12 codes in each category. RESULTS: A total of 275 people posted 710 messages. Of the 250 people for whom information on gender was available, 239 (95.6%) were women and 11 (4.4%) were men. Analysis of 710 messages posted to the listserv revealed a predominance of requests for and reports of biomedical information, such as health care providers (32.7%), medications (30.9%), tests and procedures (25.8%), and symptoms (25.7%), combined with very frequent expressions of emotional support. The most frequent single topics were peer support (included in 40.6% of all posts) and positive emotions (25.3%). Posters who reported fewer years since diagnosis were more likely to be seeking biomedical information than those who were further in time from their diagnosis (r= -.241, P<.001, n=313). Those in later stages posted an average of 3.87 messages, compared to an average of 2.64 for people in earlier stages (t= 1.786, P=.08, n=90), which is different from what we expected. No relation between years since diagnosis or age and number of messages was found. Contrary to our expectations, the topics reflecting issues of role change/identity (2.9%), stigma (0.7%), and thoughts about the future (3.9%), all identified in social-scientific literature as key concerns for people with chronic illness, appeared infrequently in this set of messages. CONCLUSIONS: Messages exchanged on this particular mailing list have a biomedical, rather than socioemotional or organizational, emphasis. The Internet offers a highly valued opportunity for those with rare diseases to connect with, learn from, and provide support to others having similar experiences. Research that compares those with primary biliary cirrhosis, who are involved in an Internet support group and those who are not, would be an important next step to better understanding the role of the Internet among patients with chronic liver disease and the implications of it in the course of their illness.<44>
Unique Identifier
15681989
Authors
Weinert C. Cudney S. Winters C.
Title
Social support in cyberspace: the next generation.
Source
CIN: Computers, Informatics, Nursing. 23(1):7-15, 2005 Jan-Feb.
Abstract
The goal of the Women to Women Project (WTW) is to help chronically ill rural women to adapt to their long-term illnesses by providing support and health information via computers. The specific aims are to (1) assess the impact of the computer-based intervention on psychosocial health (self-efficacy, self-esteem, empowerment, social support, stress, depression, loneliness), computer literacy skills, and health knowledge; and (2) analyze the computer exchanges for insights to explicate the complex process of adapting to chronic illness within the rural context. Participants are 240 rural women with a chronic illness who reside in rural areas of Montana, Idaho, Wyoming, North Dakota, and South Dakota. Preliminary data analysis suggests that the intervention is helping to improve the women's ability to adapt to their chronic illnesses. The WTW intervention model has the potential to effectively connect these women in a program of support and education.<45>
Unique Identifier
15681976
Authors
Im EO. Chee W. Tsai HM. Lin LC. Cheng CY.
Title
Internet cancer support groups: a feminist analysis.
Source
Cancer Nursing. 28(1):1-7, 2005 Jan-Feb.
Abstract
Internet Cancer Support Groups (ICSGs) are an emerging form of support group on Internet specifically for cancer patients. Previous studies have indicated the effectiveness of ICSGs as a research setting or a data-collection method. Yet recent studies have also indicated that ICSGs tend to serve highly educated, high-income White males who tend to be at an early stage of cancer. In this article, a total of 317 general ICSGs and 229 ethnic-specific ICSGs searched through Google.com, Yahoo.com, Msn.com, AOL.com, and ACOR.org are analyzed from a feminist perspective. The written records of group discussions and written memos by the research staff members were also analyzed using content analysis. The idea categories that emerged about these groups include (a) authenticity issues; (b) ethnicity and gender issues; (c) intersubjectivity issues; and (d) potential ethical issues. The findings suggest that (a) researchers adopt multiple recruitment strategies through various Internet sites and/or real settings; (b) researchers raise their own awareness of the potential influences of the health-related resources provided by ICSGs and regularly update their knowledge related to the federal and state standards and/or policies related to ICSGs; and (c) researchers consider adopting a quota-sampling method.<47>
Unique Identifier
15520598
Authors
Hill WG. Weinert C.
Title
An evaluation of an online intervention to provide social support and health education.
Source
CIN: Computers, Informatics, Nursing. 22(5):282-8, 2004 Sep-Oct.
Abstract
Managing chronic illness in the isolation of rural environments is challenging for women who lack access to personal sources of social support and health information. The Women to Women project was designed to provide chronically ill rural women access to support and health information via electronic means. This article reports on the acquisition of computer skills, the perceptions of importance of various aspects of the intervention, and an assessment of women's overall satisfaction with participation in the research project. Findings indicate that the women's self-ratings of computer skills improved significantly over the 22-week intervention and that highly interactive features of the project were rated as most important by the participants. Overall, women found the program beneficial in assisting them to better manage their chronic illness.<49>
Unique Identifier
15329632
Authors
Capitulo KL.
Title
Perinatal grief online.[see comment].
Comments
Comment in: MCN Am J Matern Child Nurs. 2005 Mar-Apr;30(2):142; PMID: 15775818
Source
MCN, American Journal of Maternal Child Nursing. 29(5):305-11, 2004 Sep-Oct.
Abstract
OBJECTIVE: To describe and interpret the culture of an online perinatal loss group. STUDY DESIGN AND METHODS: This qualitative study used ethnography, the study of culture. Methods included participant-observation, review of 447 e-mails, and participants' feedback about the findings. The setting was online in a perinatal loss listserv consisting of mothers and one grandmother who had experienced a perinatal loss through miscarriage, stillbirth, or neonatal death. In this changing group, there were between 82 to 87 participants from North America, Europe, Asia, and Australia. FINDINGS: The essence of the culture was Shared Metamorphosis. The Internet connected grieving women who otherwise would likely not have met. Participants shared virtual identities, created a community, and brought meaning to their perpetual losses. Their grief was a process of remembrance and memories, and they used symbols to represent the deceased babies; angels were a commonly discussed symbol. For bereaved mothers "life would never be the same," but joining the community of the perinatal loss listserv meant they would never be alone. CLINICAL IMPLICATIONS: The culture of online support can link individuals who are geographically distant but share common issues, in this case a perinatal loss. Professionals can use this study to better understand what women experience after a perinatal loss, and what their role can be in validating and supporting these new "mothers of angels."<52>
Unique Identifier
15142930
Authors
Lester J. Prady S. Finegan Y. Hoch D.
Title
Learning from e-patients at Massachusetts General Hospital.
Source
BMJ. 328(7449):1188-90, 2004 May 15.<54>
Unique Identifier
15142921
Authors
Eysenbach G. Powell J. Englesakis M. Rizo C. Stern A.
Title
Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. [Review] [25 refs]
Source
BMJ. 328(7449):1166, 2004 May 15.
Abstract
OBJECTIVE: To compile and evaluate the evidence on the effects on health and social outcomes of computer based peer to peer communities and electronic self support groups, used by people to discuss health related issues remotely. DESIGN AND DATA SOURCES: Analysis of studies identified from Medline, Embase, CINAHL, PsycINFO, Evidence Based Medicine Reviews, Electronics and Communications Abstracts, Computer and Information Systems Abstracts, ERIC, LISA, ProQuest Digital Dissertations, Web of Science. SELECTION OF STUDIES: We searched for before and after studies, interrupted time series, cohort studies, or studies with control groups; evaluating health or social outcomes of virtual peer to peer communities, either as stand alone interventions or in the context of more complex systems with peer to peer components. MAIN OUTCOME MEASURES: Peer to peer interventions and co-interventions studied, general characteristics of studies, outcome measures used, and study results. RESULTS: 45 publications describing 38 distinct studies met our inclusion criteria: 20 randomised trials, three meta-analyses of n of 1 trials, three non-randomised controlled trials, one cohort study, and 11 before and after studies. Only six of these evaluated "pure" peer to peer communities, and one had a factorial design with a "peer to peer only" arm, whereas 31 studies evaluated complex interventions, which often included psychoeducational programmes or one to one communication with healthcare professionals, making it impossible to attribute intervention effects to the peer to peer community component. The outcomes measured most often were depression and social support measures; most studies did not show an effect. We found no evidence to support concerns over virtual communities harming people. CONCLUSIONS: No robust evidence exists of consumer led peer to peer communities, partly because most peer to peer communities have been evaluated only in conjunction with more complex interventions or involvement with health professionals. Given the abundance of unmoderated peer to peer groups on the internet, research is required to evaluate under which conditions and for whom electronic support groups are effective and how effectiveness in delivering social support electronically can be maximised. [References: 25]<55>
Unique Identifier
15224975
Authors
Eysenbach G.
Title
The impact of the Internet on cancer outcomes.
Source
CA: a Cancer Journal for Clinicians. 53(6):356-71, 2003 Nov-Dec.
Abstract
Each day, more than 12.5 million health-related computer searches are conducted on the World Wide Web. Based on a meta-analysis of 24 published surveys, the author estimates that in the developed world, about 39% of persons with cancer are using the Internet, and approximately 2.3 million persons living with cancer worldwide are online. In addition, 15% to 20% of persons with cancer use the Internet "indirectly" through family and friends. Based on a comprehensive review of the literature, the available evidence on how persons with cancer are using the Internet and the effect of Internet use on persons with cancer is summarized. The author distinguishes four areas of Internet use: communication (electronic mail), community (virtual support groups), content (health information on the World Wide Web), and e-commerce. A conceptual framework summarizing the factors involved in a possible link between Internet use and cancer outcomes is presented, and future areas for research are highlighted.<56>
Unique Identifier
14664725
Authors
Powell J. McCarthy N. Eysenbach G.
Title
Cross-sectional survey of users of Internet depression communities.
Source
BMC Psychiatry. 3:19, 2003 Dec 10.
Abstract
BACKGROUND: Internet-based depression communities provide a forum for individuals to communicate and share information and ideas. There has been little research into the health status and other characteristics of users of these communities. METHODS: Online cross-sectional survey of Internet depression communities to identify depressive morbidity among users of Internet depression communities in six European countries; to investigate whether users were in contact with health services and receiving treatment; and to identify user perceived effects of the communities. RESULTS: Major depression was highly prevalent among respondents (varying by country from 40% to 64%). Forty-nine percent of users meeting criteria for major depression were not receiving treatment, and 35% had no consultation with health services in the previous year. Thirty-six percent of repeat community users who had consulted a health professional in the previous year felt that the Internet community had been an important factor in deciding to seek professional help. CONCLUSIONS: There are high levels of untreated and undiagnosed depression in users of Internet depression communities. This group represents a target for intervention. Internet communities can provide information and support for stigmatizing conditions that inhibit more traditional modes of information seeking.<57>
Unique Identifier
15040797
Authors
Winkelman WJ. Choo CW.
Title
Provider-sponsored virtual communities for chronic patients: improving health outcomes through organizational patient-centred knowledge management.
Source
Health Expectations. 6(4):352-8, 2003 Dec.
Abstract
Patients with long-term chronic disease experience numerous illness patterns and disease trends over time, resulting in different sets of knowledge needs than patients who intermittently seek medical care for acute or short-term problems. Health-care organizations can promote knowledge creation and utilization by chronic patients through the introduction of a virtual, private, disease-specific patient community. This virtual socialization alters the role of chronic disease patients from external consumers of health-care services to a 'community of practice' of internal customers so that, with the tacit support of their health-care organization, they have a forum supporting the integration of knowledge gained from the experiences of living with chronic disease in their self-management. Patient-centred health-care organizations can employ the virtual community to direct and support the empowerment of chronic patients in their care.<58>
Unique Identifier
14728400
Authors
Kirshner M.
Title
Preliminary exploration of online social support among adults with asthma.
Source
AMIA ... Annual Symposium Proceedings/AMIA Symposium. :895, 2003.
Abstract
OBJECTIVE: Evaluate the qualitative and quantitative differences between moderated and unmoderated on-line social support groups focused on asthma. DESIGN: A retrospective study of a single months duration of Internet postings to four public on-line support groups focused on asthma. MEASUREMENT: Content analysis of random set of messages. RESULTS: Preliminary data indicate a quantitative and qualitative difference between moderated and unmoderated groups. Patterns of differences point to variations in the content of messages and the types of social support sought and provided.<60>
Unique Identifier
12952697
Authors
Tichon J. Yellowlees P.
Title
Internet social support for children and adolescents.
Source
Journal of Telemedicine & Telecare. 9(4):238-40, 2003.<62>
Unique Identifier
12804028
Authors
Tichon JG. Shapiro M.
Title
The process of sharing social support in cyberspace.
Source
Cyberpsychology & Behavior. 6(2):161-70, 2003 Apr.
Abstract
Mutual support is an interactional communication process. Taking an interactional approach to support requires group participants be viewed not only as targets and recipients but also as sources and providers of various types of support. An analysis was performed on the interactions of a group listserve and model of online interactional support. The aim was to explore the communication process children follow. The analysis revealed self-disclosure was used in the support group in three distinct ways. Its function for the support recipient is to initiate a transactional relationship with another member for the purpose of attracting social support through the open expression of concerns and frustrations. It is then used by the support provider to demonstrate that coping is possible for the recipient through the reciprocal self-disclosure of similar concerns and situations with which the member has successfully dealt. The third use of self-disclosure was to share reciprocal social companionship relationships.<63>
Unique Identifier
12792194
Authors
Klemm P. Bunnell D. Cullen M. Soneji R. Gibbons P. Holecek A.
Title
Online cancer support groups: a review of the research literature. [Review] [48 refs]
Source
CIN: Computers, Informatics, Nursing. 21(3):136-42, 2003 May-Jun.
Abstract
This article explores current research on online cancer support groups. A review of the literature revealed 9 research articles (describing 10 research studies) that focused on computer-mediated or Internet cancer support groups. The researchers in 9 of the 10 studies concluded that online cancer support groups helped people cope more effectively with their disease. Most of the research studies had small sample sizes. Six of the 10 studies did not include men, and six focused on Caucasian women with breast cancer. Information seeking/giving was prevalent in the online groups. Gender differences, negative psychological effects, and barriers to using online groups were identified. The few studies that were found in the literature suffered from a lack of experimental design, small and homogenous samples, and lack of outcome measures, thereby limiting applicability of results. [References: 48]<64>
Unique Identifier
12746592
Authors
Fox J.
Title
Case study of alopecia universalis and web-based news groups.
Source
British Journal of Nursing. 12(9):550-8, 2003 May 8-21.
Abstract
This article presents findings from an 18-month case study of a web-based news group used by individuals with alopecia universalis. Content analysis of 228 episodes of web-based communication that occurred in relation to themes of discussion was undertaken, supported by the use of concept mapping (Northcott, 1996). Analysis identified a core concept relating to that of a community of shared experience together with four supportive themes. The themes were the search for understanding and meaning, carrying on, seeking balance between past, present and future, and relating to new self, others, and the world. The article discusses the increased growth in the use of the web as a vehicle for exploring health concerns and the specific ethical and methodological issues raised by research in this area.<66>
Unique Identifier
12599221
Authors
Winzelberg AJ. Classen C. Alpers GW. Roberts H. Koopman C. Adams RE. Ernst H. Dev P. Taylor CB.
Title
Evaluation of an internet support group for women with primary breast cancer.
Source
Cancer. 97(5):1164-73, 2003 Mar 1.
Abstract
Copyright 2003 American Cancer Society.<67>
Unique Identifier
12569591
Authors
Lieberman MA. Golant M. Giese-Davis J. Winzlenberg A. Benjamin H. Humphreys K. Kronenwetter C. Russo S. Spiegel D.
Title
Electronic support groups for breast carcinoma: a clinical trial of effectiveness.
Source
Cancer. 97(4):920-5, 2003 Feb 15.
Abstract
Copyright 2003 American Cancer Society<70>
Unique Identifier
12450957
Authors
Houston TK. Cooper LA. Ford DE.
Title
Internet support groups for depression: a 1-year prospective cohort study.
Source
American Journal of Psychiatry. 159(12):2062-8, 2002 Dec.
Abstract
OBJECTIVE: This study described the characteristics of users of Internet-based depression support groups and assessed whether use predicts change in depression symptoms and social support. METHOD: Users (N=103) of these groups were recruited into the study cohort and followed prospectively. Demographic characteristics, support group use, depression care, score on the Medical Outcomes Study Social Support Survey, and score on the Center for Epidemiologic Studies Depression Scale (CES-D Scale) were assessed by Internet survey at baseline, 6 months, and 12 months. RESULTS: Users' demographic characteristics included median age of 40 years, 78.6% women, and 56.3% unmarried. Most (86.4%) were currently depressed (CES-D Scale score >22). Over 50% of participants heavily used the support group (5 or more hours in 2 weeks), and 37.9% preferred online communication to face-to-face counseling. Social support scores were low, compared with those from other studies of primary care patients with depression. The overall follow-up rate was 81.6% at 6 or 12 months. During follow-up, 72.6% of responders still participated in the online group; 81.0% were still receiving face-to-face depression care. Heavy users of the Internet groups were more likely to have resolution of depression (CES-D Scale score < or =22) during follow-up than less frequent users, after adjustment for age, gender, employment, and baseline CES-D Scale score with logistic regression. Social support scores did not change during follow-up. CONCLUSIONS: Users had high depression severity scores, were socially isolated, and perceived considerable benefit from the group. Internet depression support groups warrant continued research regarding supplementation of face-to-face depression care.<71>
Unique Identifier
12188054
Authors
Barrera M Jr. Glasgow RE. McKay HG. Boles SM. Feil EG.
Title
Do Internet-based support interventions change perceptions of social support?: An experimental trial of approaches for supporting diabetes self-management.
Source
American Journal of Community Psychology. 30(5):637-54, 2002 Oct.
Abstract
Internet-based support groups are a rapidly growing segment of mutual aid programs for individuals with chronic illnesses and other challenges. Previous studies have informed us about the content of online exchanges between support group members, but we know little about the ability of these interventions to change participants' perceptions of support. A randomized trial of 160 adult Type 2 diabetes patients provided novice Internet users with computers and Internet access to 1 of 4 conditions: (a) diabetes information only, (b) a personal self-management coach, (c) a social support intervention, or (d) a personal self-management coach and the support intervention. After 3 months, individuals in the 2 support conditions reported significant increases in support on a diabetes-specific support measure and a general support scale. Participants' age was significantly related to change in social support, but intervention effects were still significant after accounting for this relationship. This report is a critical first step in evaluating the long-term effects of Internet-based support for diabetes self-management. The discussion identifies directions for future research.<74>
Unique Identifier
12011918
Authors
Klemm P. Hardie T.
Title
Depression in Internet and face-to-face cancer support groups: a pilot study.
Source
Oncology Nursing Forum. Online. 29(4):E45-51, 2002 May.
Abstract
PURPOSE/OBJECTIVES: To examine depression in Internet cancer support groups as compared to traditional (face-to-face) cancer support groups and to explore the relationship between Internet use and levels of depression. DESIGN: Exploratory, descriptive. SETTING: Traditional (face-to-face) and Internet cancer support groups. SAMPLE: Convenience sample of 40 patients with cancer, 14 from traditional face-to-face groups and 26 from an Internet support group, with different cancer diagnoses. METHODS: Traditional paper or Internet surveys consisting of an investigator-developed questionnaire including demographic information, brief medical history, support group history, and the Center for Epidemiologic Studies Depression Scale (CES-D). MAIN RESEARCH VARIABLE: Depression scores on the CES-D. FINDINGS: Participants in the face-to-face groups were 100% male. The online group was 56% male and 44% female. Groups did not differ significantly by income, health insurance status, or days since initial diagnosis. Groups differed significantly on level of depression. The traditional (face-to-face) group had a CES-D mean score of 1.86 (SD = 2.69), and the online group had a mean score of 29.27 (SD = 11.89, p less than 0.000). A comparison of CES-D scores of men in the face-to-face and Internet groups revealed that they differed significantly on level of depression. Men in the traditional group had a mean score of 1.86 (SD = 2.69), and men in the online group had a mean score of 27.42 (SD = 112.69, p less than 0.000). CONCLUSIONS: These data suggest that more depressed patients with cancer use Internet support groups instead of face-to-face support. Before online interventions can be implemented effectively, their efficacy needs to be evaluated. IMPLICATIONS FOR NURSING: Patients with cancer are at increased risk for developing depression. This should be a consideration during nursing assessments. Traditional cancer support groups can help people cope with their cancer, but the efficacy of Internet cancer support groups in providing psychoeducation and psychotherapeutic intervention remains to be proven.<81>
Unique Identifier
11158498
Authors
Johnson KB. Ravert RD. Everton A.
Title
Hopkins Teen Central: Assessment of an internet-based support system for children with cystic fibrosis.
Source
Pediatrics. 107(2):E24, 2001 Feb.
Abstract
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.<84>
Unique Identifier
14621714
Authors
Humphreys K. Winzelberg A. Klaw E.
Title
Psychologists' ethical responsibilities in Internet-based groups: issues, strategies, and a call for dialogue.
Source
Professional Psychology - Research & Practice. 31(5):493-6, 2000 Oct.
Abstract
How can psychologists participate ethically as facilitators, advisers, and peer members in Internet-based groups? The astonishing growth of Internet technology and on-line groups has outpaced the development of formal ethical guidelines for psychologists involved in on-line groups. This article provides an initial appraisal of psychologists' ethical responsibilities in discussion, support, and self-help groups that operate on the Internet and offers practical strategies for avoiding ethical problems. By presenting initial strategies and guidelines for ethical behavior in Internet-based groups, the authors hope to stimulate the field to further discuss and analyze these issues.<86>
Unique Identifier
11188095
Authors
Anonymous.
Title
Online support: chronically ill patients report benefits, high levels of satisfaction.
Source
Disease Management Advisor. 6(10):158-61, 149, 2000 Oct.
Abstract
That's what one well-known diabetes care center wanted to find out. So it launched a study to determine the surfing habits and opinions of people who logged on to a series of moderated chat groups. The results are promising, but health care organizations interested in sponsoring online support groups of their own need to carefully consider how they will proceed.<88>
Unique Identifier
11075065
Authors
Finfgeld DL.
Title
Therapeutic groups online: the good, the bad, and the unknown. [Review] [28 refs]
Source
Issues in Mental Health Nursing. 21(3):241-55, 2000 Apr-May.
Abstract
In an era of diminishing health care resources, the number of online support groups is increasing. These groups consist of individuals seeking assistance with problems such as depression, suicidal tendencies, substance abuse, cancer, and eating disorders. Although online support groups are apparently popular, little is known about their therapeutic efficacy. Seminal findings suggest that these groups offer some advantages over their traditional face-to-face counterparts; however, disadvantages have also been identified. It is clear that additional research is required to better understand what role these groups should play in mental health care. [References: 28]<90>
Unique Identifier
10911588
Authors
Bacon ES. Condon EH. Fernsler JI.
Title
Young widows' experience with an Internet self-help group.
Source
Journal of Psychosocial Nursing & Mental Health Services. 38(7):24-33, 2000 Jul.
Abstract
1. Finding empathetic support is an important factor in coping for people with various needs. 2. Support group resources may be limited due to long travel distances, expense of child care, lack of transportation, or no available group for specific needs. 3. Nurses can guide their patients to Internet support groups for self-care when traditional groups are not accessible or applicable to their circumstances.<94>
Unique Identifier
10505283
Authors
Finn J.
Title
An exploration of helping processes in an online self-help group focusing on issues of disability. [Review] [58 refs]
Source
Health & Social Work. 24(3):220-31, 1999 Aug.
Abstract
This article reviews the growing use of online self-help and mutual aid groups and explores the helping mechanisms and content of an online self-help group for issues related to disability. Messages were downloaded from the group and coded by raters into helping categories to examine the extent to which therapeutic processes were found. The categories included both task and socioemotional-related functions. The study found that the group provided many of the processes used in face-to-face self-help and mutual aid groups, with an emphasis on mutual problem solving, information sharing, expression of feelings, catharsis, and mutual support and empathy. Implications for social work and health care providers and the need for further research are discussed. [References: 58]<97>
Unique Identifier
10194883
Authors
Klemm P. Hurst M. Dearholt SL. Trone SR.
Title
Gender differences on Internet cancer support groups.
Source
Computers in Nursing. 17(2):65-72, 1999 Mar-Apr.
Abstract
The role of community-based cancer support groups (CSGs) in helping people cope with cancer is well known. Recently, online CSGs have become a viable alternative to traditional CSGs. The purposes of this study were to determine if categories of responses on Internet cancer support groups (ICSGs) differ when the majority of the participants were of a single gender, and whether response categories seen on gender-specific ICSGs were different than those on ICSGs used equally by men and women. A line-by-line analysis of postings on prostate, breast, and mixed ICSGs were analyzed and responses categorized. Four categories (information giving/seeking; encouragement/support; personal opinion; and personal experience) accounted for approximately 80% of responses across the groups. Information giving/seeking was ranked first in the prostate group, and personal experience took priority in the breast group. Men were more than twice as likely to give information and women more than twice as likely to give encouragement and support. One category (prayer), identified in the mixed group, was lacking in the prostate and breast groups, and an activism category was added to the prostate group. Categorical responses differed by gender (chi 2 = 79.40, P < .0001). Attention should be given to facilitating the entry of underserved groups into ICSGs. Future research should explore the relationship between ICSG membership and variables such as depression, survival time, and quality of life.
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