Article
An online adolescent message board discussion about the internet: Use for pain
Journal of Child Health Care 2015, Vol. 19(3) 412–418 ª The Author(s) 2013 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1367493513509420 chc.sagepub.com
Ellen M Henderson and Christopher Eccleston Centre for Pain Research, The University of Bath, UK
Abstract Health-care systems seek to advance their care to adolescents through the online provision of information and support. An online, moderated, asynchronous discussion board called Let’s Chat Pain was created to recruit adolescent users of online content for pain to a discussion about pain coping and associated Internet use. Participants were asked about everyday pain coping and the role they judge online information to play in this coping. They were asked about determinations of website reliability and validity for health but especially for help with pain problems. Themes around adolescent trust in online websites for pain and research are explored, in addition to inhibiting and disinhibiting factors associated with the Internet use for health. We found users to mistrust online content even when they know it to be valid. Further study is needed to assess if there are ways of instilling confidence in pain information presented online for this group. Keywords Adolescent, focus groups, Internet, message board, pain
Introduction Adolescents are considered digital natives (Dresang, 2006; Loader, 2007; Palfrey and Gasser, 2008), as their Internet usage is frequent, mobile and characterised by a level of computer and device literacy unmatched in older generations (Lenhart, 2009). This reliance on the Internet by younger generations for everyday events has led to some hypothesizing that adolescents may be more amenable to, and comfortable with, using the Internet to access health care online and to participate in online research (Ritterband and Palermo, 2009). Strategic investment in online information and support for health has been undertaken under this assumption (National Audit Office, 2008).
Corresponding author: Christopher Eccleston, Centre for Pain Research, The University of Bath, Claverton Down, Bath, BA2 7AY, UK. Email: [email protected]
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However, there is evidence to indicate that adolescents, while comfortable with these technologies, struggle to harness them to their full potential when trying to engage their use (Palfrey and Gasser, 2008). Low levels of basic literacy have been shown to hinder adolescents searching for online information (Anderson and Rainie, 2010). Lack of skill in searching online information, particularly proper use of search terms when utilising search engines, and lack of knowledge as to how to make quality judgements about information found online are common (Dresang, 2006). In addition, few adolescents may be aware of the safety considerations they should take in their online actions (Battles, 2010). Despite adolescents’ computer literacy, the Internet may not be the free-flowing information superhighway it is commonly assumed to be, with some even going so far as to hypothesise that adolescent use of the Internet has been overestimated (Carr, 2011; Morozov, 2011). Emergent literature on the quality of online content pertaining to health indicates that when adolescents use the Internet to seek out health information, they may be interacting with poor or harmful advice (Borzekowski and Rickert, 2001; D’Auria, 2011; Fox et al., 2000; Gray et al., 2005; Henderson et al., 2012b; Malik and Coulson, 2010; Stinson et al., 2009). This tendency towards a lack of quality appears across the board for a variety of health information and is not unique to certain health complaints over others. It was recently shown that online websites for adolescents in pain are of poor quality, inadequate in their role of providing support to adolescents and hard to read (Henderson et al., 2012b). This investigation was designed to qualitatively explore barriers to online pain information through assessment of the inhibitory and disinhibitory factors of Internet use in a group of adolescents who self-identified as frequent users of online health and pain content. The secondary aim was to evaluate the methodology employed in this study. Adolescents were recruited to participate in an online discussion board (DB). Participants were recruited with no face-to-face contact from the researcher. This increased the need for clear guidelines as to best procedure in the event of participant harm as there was no offline way to follow up on participant safety.
Methods Let’s Chat Pain is a moderated, asynchronous DB created for the purpose of this research study. The DB was checked daily by the first author to confirm that the DB rules were being adhered to and to check that the adolescents who were participating had not made any disclosures to the DB that would require further referral. It was made using the FluxBB v 1.4.7 tool an open source application for the development of forum websites http://fluxbb.org/. It was hosted on the University of Bath server to ensure full security of participant data. The study was granted ethical approval by the University of Bath ethics committee. A full discussion of the ethical safeguards in place for the use of the DB for research with adolescent pain sufferers has been described in more detail by Henderson et al. (2012a). Strict guidelines around procedure for adolescent disclosure of abuse, incidences of cyberbullying between participants and when to contact a consenting adult were adhered to over the course of the study. No topics of discussion were discouraged and a strict referral procedure was in place for any disclosures of child protection issues. Participants were recruited to the DB through mailing lists of existing adolescent pain websites and through flyers sent to computer classes across the South West of England and the West of Ireland, inviting students who had accessed online health information in the last six months to participate in an online research study. All participants self-selected as adolescent users of this information. Participants were given a URL that directed them to a welcome page inviting them
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to create a secure log in. Before being allowed to actively engage with the site, they were directed to answer a number of questions about themselves, creating a private profile available only to the researcher. Within this profile creation stage, they were asked to assent to the DB rules prohibiting the disclosure of identifying information during the discussion, consenting to the moderation of their responses and prohibiting bullying or pejorative comments. Parental consent was collected using an opt-out consent processes, whereby an automated email was generated informing parents that their child was participating in the study and encouraging them to contact us immediately if they wished to withdraw their child from the study. Adolescent consent was assumed when they choose to participate. Adolescents were then directed to answer on an 11-point numerical scale of pain experience, anchored with the phrases ‘no pain’ and ‘worst imaginable pain’, how much pain they were in during their participation (0–10), how much pain they had been in the last week (0–10) (see Stinson et al., 2006, for a full review of the validity of these measures) and their approximate pain locations (up to four locations). They gave details of any chronic pain conditions. Once registered, participants were directed to a series of five researcher-led discussions around each research question. These discussions were openly accessible to anybody signed up to the DB, so participants could see what others had said and respond to others’ opinions. Participants could log on as many times as they wished and respond to others on the DB as they saw fit, and we encouraged them to respond to each other in order to generate discussions. The questions were: 1. What do you normally do when in pain? How do you cope? 2. Do you use the Internet for health information? If so, why? If not, why not? 3. Do you use the Internet for health or pain information instead of other sources like your parents or teachers? Or do you use it with them to seek health information? 4. How reliable do you feel the information on the Internet to be? How much of what you find online do you believe? 5. How do you tell if a website is reliable? What do you look for or at in order to decide to believe what it says? Participation took approximately 15 minutes. All participants were directed to an online debrief page and given the contact details for the researcher and sources of further support, if they wished to discuss the DB with a mental health professional. A copy of this page was emailed to their consenting adult. Participants were rewarded with a £5 online store voucher for participating. The DB was operational from February 2011 until June 2011. One month before the DB was removed from the university server, a reminder was sent out to all participants that the study would be closing but that they were still welcome to give their opinions. After the DB was taken down, the data were transported into a word document for thematic analysis (Braun and Clarke, 2006). Themes were generated by the first author and checked for veracity of their content by the second author. No topics were coded based on a priori assumptions about the data. However, we were specifically interested in the purpose of the Internet use for those who use it frequently and how this use allowed them to cope over and above what was available to them offline. Through the profile page of each participant, researchers were able to identify who had logged in and when and if they used that time logged in to contribute to the board or just to observe others on the board. Methodology of the DB was evaluated based on frequency of participation and contribution. The robustness of the DB rules for reducing incidences of cyberbullying and inflammatory postings was evaluated on the basis of how many of these incidences occurred and
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whether there was any cause for discussion of DB content between the research team, such as whether a participant had disclosed a child protection issue.
Results There were a total of 13 participants in this study, 8 of them were frequent contributors to the DB and the remaining 5 participants logged in to create a profile but did not participate in the discussions. They are included as participants in the study because they observed others on the DB, which was previously shown to be a valuable component in the way that patients and participants use online message boards (van Uden-Kraan et al., 2008). Demographic data were collected from the log in profiles generated when participants registered. Of these participants who registered but who did not contribute, three were male and two were female. They did not differ in average pain score or age compared to contributors and we do not know their nationality. Of those who contributed, five of the participants were female and three were male and the average age of the participants was 14.38 years (SD ¼ 2.20 years; range 12–17 years). Only 2 participants reported being in any pain; both participants rated their pain intensity during participation as 3 on the 11-point numerical scale. These two participants and another reported having pain in the last week. Pain scores during the last week were higher, that is, 4, 4 and 5 on the 11-point numerical scale, respectively. Pain locations reported were the throat, abdomen and head, which are consistent with the general incidence reported in the epidemiological literature (King et al., 2011; Perquin et al., 2000). No participant reported a chronic pain condition. Three participants reported having had a pain episode that prevented their attendance at school during the last year, which is again consistent with the epidemiological data (King et al., 2011; Perquin et al., 2000). Participants adhered to the rules of the DB and did engage in discussions with each other around the topics, although this function was used infrequently. There were no instances that required moderation by the research team. Most participants logged on once and responded to others on the DB, usually by specific reference to other participant’s user names. However, repeated contributions to the DB were rare and few participants used the opportunity to log in and keep the conversations alive. No participant had an adult opt out of their consent for participation. Common themes during the discussions were coping with pain, reliability and truth and purpose. These themes are described in more detail below.
Coping with pain The Internet was infrequently used as a means of information or support in facilitating pain coping. It was seen as a difficult way to seek information, and other offline methods were easier to access: ‘I would usually just ask my mother. It’s easier . . . ’. Pointedly, participants reported on the ease of asking parents for advice when in pain as a primary motivation for not using the Internet to learn how to cope independently, and many cited a reliance on parents in order to cope with pain. This reliance was usually geared both towards information seeking as to how to cope independently and towards the practicalities in accessing coping resources: ‘I would tell my mother, and take tablets that my mother gives me for the pain’. Often participants used the Internet as a way to confirm what their parents had already told them or as a means to seek out information that they had already asked their parents about and been
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unsuccessful in getting a satisfactory answer: ‘Mainly I would use the Internet as a source of supplementary information on top of any info that I get from my mum . . . ’.
Reliability and truth Contrary to previous literature, participants appeared to have a clear strategy for determining the quality of online health information. This strategy was to seek multiple sources for information and confirmation of online opinion by cross referencing the sources of this information with other websites: As the others have said, I would cross check any info which I would find with the info on other websites to see if its true. [sic] Also, I would look to see if the sites had cited any sources of info, as this usually suggests reliability.
However, some still felt that even with these methods in place, there was a lack of truthfulness to online information and this uncertainty was the primary inhibitory factor for them in using the Internet as a source with any frequency: ‘You never really know if it [the internet] is reliable so I don’t believe it’. I still wouldn’t trust it 100%.
Purpose The Internet appeared to serve dual purposes in adolescent pain coping. First, adolescents reported use of the Internet to search out information they could not find elsewhere particularly for health information less available to them outside of their usual information sources. ‘Mainly I would use the Internet as a source of supplementary information on top of any info that I get from my mum or doctor’. Second, participants reported using the Internet to look for information on others’ health, especially family members. the internet is still a good source of information for serious conditions i.e. strokes, heart attacks and cancer. if there was someone in my family sick with any of these i would definatly [sic] use the internet to gether [sic] any possible information on these
Discussion We recently reported a lack of use of online health information on adolescents seeking help for common health complaints including pain (Henderson et al., 2012b). We designed this investigation to explore the inhibitory and disinhibitory factors associated with online health information seeking in frequent users of online content that we failed to sample in our previous survey. We specifically wished to explore why participants chose to use online sources of help for pain and health. Adolescents acknowledged the role of the Internet in research, when their usual sources of health information needed to be confirmed or for seeking out information on more complex questions than usual sources were capable of answering. Contrary to previous research, participants reported on a clear strategy for determining online quality. This strategy is the recommended
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way to assess quality (Charnock et al., 1999). However, despite being equipped with this knowledge, participants still reported mistrust in what they found online. Further exploration of the source, maintenance and function of this mistrust is needed. We did not record the URLs of websites used by the participants in this study and so we cannot know for sure whether the reasons for their mistrust are justified. Participants on this DB had an interest in online pain material. They were recruited from websites pertaining to pain or they self-selected for the study on the basis of their having accessed online pain information. No participant in this study reported severe pain. It may be the case that had we asked participants in a lot of pain, we would have found different results. In addition, had we accessed participants with a chronic pain condition, who may access more health care, we may have also found different results. Perhaps, had these participants been more affected by pain, their need for online information would be different. There are three avenues for future research as a result of this work. First, research should be conducted to explore how online health content can undermine or foster adolescent trust. Further, it is not clear how far the lack of trust in the Internet for health-related information is well founded. Second, parents should be included in future research studies of this kind. Participants consistently reported on a network of information and support for pain involving parents primarily. It is only when this network is unavailable or when supplementary information is required that adolescents reported the Internet use. We do not know where parents get their information from. Finally, explorations of the naturalistic responses of adolescents on the Internet websites for health are needed in real time as they explore these sites. Recording of adolescent responses to online content should be conducted in order to assess whether the self-reported responses to these websites hold true in practice.
Conclusions In conclusion, even those adolescents who self-select as using the Internet to look for online pain and health information can sometimes mistrust its content. They prefer to ask their parents how to cope when in pain. Further research should be conducted to assess how to challenge these cognitions in order to improve the utility of our e-health content for this population. Conflict of interest The authors declared no conflicts of interest. Funding This study is funded by the Annett trust studentship as part of the first author’s PhD dissertation. References Anderson J and Rainie L (2010) Future of the Internet IV. Available at: http://www.pewinternet.org/Reports/ 2010/Future-of-the-Internet-IV.aspx. (accessed 20 September 2011) Battles H (2010) Exploring ethical and methodological issues in Internet-based research with adolescents. International Journal of Qualitative Methods 9: 27–39. Borzekowski DLG and Rickert VI (2001) Adolescent cybersurfing for health information: A new resource that crosses barriers. Archives of Pediatrics and Adolescent Medicine 155: 813–817. Braun V and Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3: 77–101.
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Carr N (2011) The Shallows: What the Internet is Doing to Our Brains. New York, NY: WW Norton and Co. Inc. Charnock D, Shepperd S, Needham G, et al. (1999) DISCERN: An instrument for judging the quality of written consumer health information on treatment choices. Journal of Epidemiology and Community Health 53: 105–111. D’Auria JP (2011) Health web sites for teens. Journal of Pediatric Health Care 25: e1–e5. Dresang ET (2006) The information-seeking behavior of youth in the digital environment. Library Trends 54: 178–196. Fox S, Rainie L and Horrigan J (2000) The online health care revolution: How the web helps americans take better care of themselves. Available at: http://www.pewinternet.org/Reports/2000/The-Online-HealthCare-Revolution.aspx. (accessed 20 August 2010) Gray NJ, Klein JD, Noyce PR, et al. (2005) Health information-seeking behaviour in adolescence: The place of the Internet. Social Science and Medicine 60: 1467–1478. Henderson EM, Law EF, Palermo TM, et al. (2012a) Ethical guidance for pediatric e-health research using examples from pain research with adolescents. Journal of Pediatric Psychology 37: 1116–1126. Henderson EM, Rosser BA, Keogh E, et al. (2012b) Internet sites offering adolescents help with headache, abdominal pain, and dysmenorrhoea: A description of content, quality, and peer interactions. Journal of Pediatric Psychology 37: 262–271. King S, Chambers CT, Huguet A, et al. (2011) The epidemiology of chronic pain in children and adolescents revisited: A systematic review. Pain 152: 2729–2738. Lenhart A (2009) Teens and Mobile Phones over the Past Five Years: Pew Internet Looks Back. Washington, USA: Pew Internet and American Life Project. Loader B (2007) Young Citizens in the Digital Age: Political Engagement, Young People and New Media. London, UK: Psychology Press. Malik S and Coulson NS (2010) ‘They all supported me but I felt like I suddenly didn’t belong anymore’: An exploration of perceived disadvantages to online support seeking. Journal of Psychosomatic Obstetrics and Gynecology 31: 140–149. Morozov E (2011) The Net Delusion: The Dark Side of Internet Freedom. New York, NY: Public Affairs. National Audit Office (2008) Financial Management in the NHS: Report of the NHS Summarised Accounts 2007-08. London, UK: The Stationary Office. Palfrey J and Gasser U (2008) Born Digital: Understanding the First Generation of Digital Natives. New York, NY: Basic Books. Perquin CW, Hazebroek-Kampschreur AAJM, Hunfeld JAM, et al. (2000) Pain in children and adolescents: A common experience. Pain 87: 51–58. Ritterband LM and Palermo TM (2009) Introduction to the special issue: eHealth in Pediatric Psychology. Journal of Pediatric Psychology 34: 453–456. Stinson JN, Kavanagh T, Yamada J, et al. (2006) Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents. Pain 125: 143–157. Stinson JN, Tucker L, Huber A, et al. (2009) Surfing for juvenile idiopathic arthritis: Perspectives on quality and content of information on the Internet. The Journal of Rheumatology 36: 1755–1762. van Uden-Kraan CF, Drossaert CHC, Taal E, et al. (2008) Self-reported differences in empowerment between lurkers and posters in online patient support groups. Journal of Medical Internet Research 10: e18.
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An online adolescent message board discussion about the internet: Use for pain
Journal of Child Health Care 2015, Vol. 19(3) 412–418 ª The Author(s) 2013 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1367493513509420 chc.sagepub.com
Ellen M Henderson and Christopher Eccleston Centre for Pain Research, The University of Bath, UK
Abstract Health-care systems seek to advance their care to adolescents through the online provision of information and support. An online, moderated, asynchronous discussion board called Let’s Chat Pain was created to recruit adolescent users of online content for pain to a discussion about pain coping and associated Internet use. Participants were asked about everyday pain coping and the role they judge online information to play in this coping. They were asked about determinations of website reliability and validity for health but especially for help with pain problems. Themes around adolescent trust in online websites for pain and research are explored, in addition to inhibiting and disinhibiting factors associated with the Internet use for health. We found users to mistrust online content even when they know it to be valid. Further study is needed to assess if there are ways of instilling confidence in pain information presented online for this group. Keywords Adolescent, focus groups, Internet, message board, pain
Introduction Adolescents are considered digital natives (Dresang, 2006; Loader, 2007; Palfrey and Gasser, 2008), as their Internet usage is frequent, mobile and characterised by a level of computer and device literacy unmatched in older generations (Lenhart, 2009). This reliance on the Internet by younger generations for everyday events has led to some hypothesizing that adolescents may be more amenable to, and comfortable with, using the Internet to access health care online and to participate in online research (Ritterband and Palermo, 2009). Strategic investment in online information and support for health has been undertaken under this assumption (National Audit Office, 2008).
Corresponding author: Christopher Eccleston, Centre for Pain Research, The University of Bath, Claverton Down, Bath, BA2 7AY, UK. Email: [email protected]
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However, there is evidence to indicate that adolescents, while comfortable with these technologies, struggle to harness them to their full potential when trying to engage their use (Palfrey and Gasser, 2008). Low levels of basic literacy have been shown to hinder adolescents searching for online information (Anderson and Rainie, 2010). Lack of skill in searching online information, particularly proper use of search terms when utilising search engines, and lack of knowledge as to how to make quality judgements about information found online are common (Dresang, 2006). In addition, few adolescents may be aware of the safety considerations they should take in their online actions (Battles, 2010). Despite adolescents’ computer literacy, the Internet may not be the free-flowing information superhighway it is commonly assumed to be, with some even going so far as to hypothesise that adolescent use of the Internet has been overestimated (Carr, 2011; Morozov, 2011). Emergent literature on the quality of online content pertaining to health indicates that when adolescents use the Internet to seek out health information, they may be interacting with poor or harmful advice (Borzekowski and Rickert, 2001; D’Auria, 2011; Fox et al., 2000; Gray et al., 2005; Henderson et al., 2012b; Malik and Coulson, 2010; Stinson et al., 2009). This tendency towards a lack of quality appears across the board for a variety of health information and is not unique to certain health complaints over others. It was recently shown that online websites for adolescents in pain are of poor quality, inadequate in their role of providing support to adolescents and hard to read (Henderson et al., 2012b). This investigation was designed to qualitatively explore barriers to online pain information through assessment of the inhibitory and disinhibitory factors of Internet use in a group of adolescents who self-identified as frequent users of online health and pain content. The secondary aim was to evaluate the methodology employed in this study. Adolescents were recruited to participate in an online discussion board (DB). Participants were recruited with no face-to-face contact from the researcher. This increased the need for clear guidelines as to best procedure in the event of participant harm as there was no offline way to follow up on participant safety.
Methods Let’s Chat Pain is a moderated, asynchronous DB created for the purpose of this research study. The DB was checked daily by the first author to confirm that the DB rules were being adhered to and to check that the adolescents who were participating had not made any disclosures to the DB that would require further referral. It was made using the FluxBB v 1.4.7 tool an open source application for the development of forum websites http://fluxbb.org/. It was hosted on the University of Bath server to ensure full security of participant data. The study was granted ethical approval by the University of Bath ethics committee. A full discussion of the ethical safeguards in place for the use of the DB for research with adolescent pain sufferers has been described in more detail by Henderson et al. (2012a). Strict guidelines around procedure for adolescent disclosure of abuse, incidences of cyberbullying between participants and when to contact a consenting adult were adhered to over the course of the study. No topics of discussion were discouraged and a strict referral procedure was in place for any disclosures of child protection issues. Participants were recruited to the DB through mailing lists of existing adolescent pain websites and through flyers sent to computer classes across the South West of England and the West of Ireland, inviting students who had accessed online health information in the last six months to participate in an online research study. All participants self-selected as adolescent users of this information. Participants were given a URL that directed them to a welcome page inviting them
Downloaded from chc.sagepub.com at UNIV OF WISCONSIN OSHKOSH on November 14, 2015
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to create a secure log in. Before being allowed to actively engage with the site, they were directed to answer a number of questions about themselves, creating a private profile available only to the researcher. Within this profile creation stage, they were asked to assent to the DB rules prohibiting the disclosure of identifying information during the discussion, consenting to the moderation of their responses and prohibiting bullying or pejorative comments. Parental consent was collected using an opt-out consent processes, whereby an automated email was generated informing parents that their child was participating in the study and encouraging them to contact us immediately if they wished to withdraw their child from the study. Adolescent consent was assumed when they choose to participate. Adolescents were then directed to answer on an 11-point numerical scale of pain experience, anchored with the phrases ‘no pain’ and ‘worst imaginable pain’, how much pain they were in during their participation (0–10), how much pain they had been in the last week (0–10) (see Stinson et al., 2006, for a full review of the validity of these measures) and their approximate pain locations (up to four locations). They gave details of any chronic pain conditions. Once registered, participants were directed to a series of five researcher-led discussions around each research question. These discussions were openly accessible to anybody signed up to the DB, so participants could see what others had said and respond to others’ opinions. Participants could log on as many times as they wished and respond to others on the DB as they saw fit, and we encouraged them to respond to each other in order to generate discussions. The questions were: 1. What do you normally do when in pain? How do you cope? 2. Do you use the Internet for health information? If so, why? If not, why not? 3. Do you use the Internet for health or pain information instead of other sources like your parents or teachers? Or do you use it with them to seek health information? 4. How reliable do you feel the information on the Internet to be? How much of what you find online do you believe? 5. How do you tell if a website is reliable? What do you look for or at in order to decide to believe what it says? Participation took approximately 15 minutes. All participants were directed to an online debrief page and given the contact details for the researcher and sources of further support, if they wished to discuss the DB with a mental health professional. A copy of this page was emailed to their consenting adult. Participants were rewarded with a £5 online store voucher for participating. The DB was operational from February 2011 until June 2011. One month before the DB was removed from the university server, a reminder was sent out to all participants that the study would be closing but that they were still welcome to give their opinions. After the DB was taken down, the data were transported into a word document for thematic analysis (Braun and Clarke, 2006). Themes were generated by the first author and checked for veracity of their content by the second author. No topics were coded based on a priori assumptions about the data. However, we were specifically interested in the purpose of the Internet use for those who use it frequently and how this use allowed them to cope over and above what was available to them offline. Through the profile page of each participant, researchers were able to identify who had logged in and when and if they used that time logged in to contribute to the board or just to observe others on the board. Methodology of the DB was evaluated based on frequency of participation and contribution. The robustness of the DB rules for reducing incidences of cyberbullying and inflammatory postings was evaluated on the basis of how many of these incidences occurred and
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whether there was any cause for discussion of DB content between the research team, such as whether a participant had disclosed a child protection issue.
Results There were a total of 13 participants in this study, 8 of them were frequent contributors to the DB and the remaining 5 participants logged in to create a profile but did not participate in the discussions. They are included as participants in the study because they observed others on the DB, which was previously shown to be a valuable component in the way that patients and participants use online message boards (van Uden-Kraan et al., 2008). Demographic data were collected from the log in profiles generated when participants registered. Of these participants who registered but who did not contribute, three were male and two were female. They did not differ in average pain score or age compared to contributors and we do not know their nationality. Of those who contributed, five of the participants were female and three were male and the average age of the participants was 14.38 years (SD ¼ 2.20 years; range 12–17 years). Only 2 participants reported being in any pain; both participants rated their pain intensity during participation as 3 on the 11-point numerical scale. These two participants and another reported having pain in the last week. Pain scores during the last week were higher, that is, 4, 4 and 5 on the 11-point numerical scale, respectively. Pain locations reported were the throat, abdomen and head, which are consistent with the general incidence reported in the epidemiological literature (King et al., 2011; Perquin et al., 2000). No participant reported a chronic pain condition. Three participants reported having had a pain episode that prevented their attendance at school during the last year, which is again consistent with the epidemiological data (King et al., 2011; Perquin et al., 2000). Participants adhered to the rules of the DB and did engage in discussions with each other around the topics, although this function was used infrequently. There were no instances that required moderation by the research team. Most participants logged on once and responded to others on the DB, usually by specific reference to other participant’s user names. However, repeated contributions to the DB were rare and few participants used the opportunity to log in and keep the conversations alive. No participant had an adult opt out of their consent for participation. Common themes during the discussions were coping with pain, reliability and truth and purpose. These themes are described in more detail below.
Coping with pain The Internet was infrequently used as a means of information or support in facilitating pain coping. It was seen as a difficult way to seek information, and other offline methods were easier to access: ‘I would usually just ask my mother. It’s easier . . . ’. Pointedly, participants reported on the ease of asking parents for advice when in pain as a primary motivation for not using the Internet to learn how to cope independently, and many cited a reliance on parents in order to cope with pain. This reliance was usually geared both towards information seeking as to how to cope independently and towards the practicalities in accessing coping resources: ‘I would tell my mother, and take tablets that my mother gives me for the pain’. Often participants used the Internet as a way to confirm what their parents had already told them or as a means to seek out information that they had already asked their parents about and been
Downloaded from chc.sagepub.com at UNIV OF WISCONSIN OSHKOSH on November 14, 2015
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unsuccessful in getting a satisfactory answer: ‘Mainly I would use the Internet as a source of supplementary information on top of any info that I get from my mum . . . ’.
Reliability and truth Contrary to previous literature, participants appeared to have a clear strategy for determining the quality of online health information. This strategy was to seek multiple sources for information and confirmation of online opinion by cross referencing the sources of this information with other websites: As the others have said, I would cross check any info which I would find with the info on other websites to see if its true. [sic] Also, I would look to see if the sites had cited any sources of info, as this usually suggests reliability.
However, some still felt that even with these methods in place, there was a lack of truthfulness to online information and this uncertainty was the primary inhibitory factor for them in using the Internet as a source with any frequency: ‘You never really know if it [the internet] is reliable so I don’t believe it’. I still wouldn’t trust it 100%.
Purpose The Internet appeared to serve dual purposes in adolescent pain coping. First, adolescents reported use of the Internet to search out information they could not find elsewhere particularly for health information less available to them outside of their usual information sources. ‘Mainly I would use the Internet as a source of supplementary information on top of any info that I get from my mum or doctor’. Second, participants reported using the Internet to look for information on others’ health, especially family members. the internet is still a good source of information for serious conditions i.e. strokes, heart attacks and cancer. if there was someone in my family sick with any of these i would definatly [sic] use the internet to gether [sic] any possible information on these
Discussion We recently reported a lack of use of online health information on adolescents seeking help for common health complaints including pain (Henderson et al., 2012b). We designed this investigation to explore the inhibitory and disinhibitory factors associated with online health information seeking in frequent users of online content that we failed to sample in our previous survey. We specifically wished to explore why participants chose to use online sources of help for pain and health. Adolescents acknowledged the role of the Internet in research, when their usual sources of health information needed to be confirmed or for seeking out information on more complex questions than usual sources were capable of answering. Contrary to previous research, participants reported on a clear strategy for determining online quality. This strategy is the recommended
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way to assess quality (Charnock et al., 1999). However, despite being equipped with this knowledge, participants still reported mistrust in what they found online. Further exploration of the source, maintenance and function of this mistrust is needed. We did not record the URLs of websites used by the participants in this study and so we cannot know for sure whether the reasons for their mistrust are justified. Participants on this DB had an interest in online pain material. They were recruited from websites pertaining to pain or they self-selected for the study on the basis of their having accessed online pain information. No participant in this study reported severe pain. It may be the case that had we asked participants in a lot of pain, we would have found different results. In addition, had we accessed participants with a chronic pain condition, who may access more health care, we may have also found different results. Perhaps, had these participants been more affected by pain, their need for online information would be different. There are three avenues for future research as a result of this work. First, research should be conducted to explore how online health content can undermine or foster adolescent trust. Further, it is not clear how far the lack of trust in the Internet for health-related information is well founded. Second, parents should be included in future research studies of this kind. Participants consistently reported on a network of information and support for pain involving parents primarily. It is only when this network is unavailable or when supplementary information is required that adolescents reported the Internet use. We do not know where parents get their information from. Finally, explorations of the naturalistic responses of adolescents on the Internet websites for health are needed in real time as they explore these sites. Recording of adolescent responses to online content should be conducted in order to assess whether the self-reported responses to these websites hold true in practice.
Conclusions In conclusion, even those adolescents who self-select as using the Internet to look for online pain and health information can sometimes mistrust its content. They prefer to ask their parents how to cope when in pain. Further research should be conducted to assess how to challenge these cognitions in order to improve the utility of our e-health content for this population. Conflict of interest The authors declared no conflicts of interest. Funding This study is funded by the Annett trust studentship as part of the first author’s PhD dissertation. References Anderson J and Rainie L (2010) Future of the Internet IV. Available at: http://www.pewinternet.org/Reports/ 2010/Future-of-the-Internet-IV.aspx. (accessed 20 September 2011) Battles H (2010) Exploring ethical and methodological issues in Internet-based research with adolescents. International Journal of Qualitative Methods 9: 27–39. Borzekowski DLG and Rickert VI (2001) Adolescent cybersurfing for health information: A new resource that crosses barriers. Archives of Pediatrics and Adolescent Medicine 155: 813–817. Braun V and Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3: 77–101.
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