First Impact Factor released in June 2010 and now listed in MEDLINE!
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Early Intervention in Psychiatry 2014; ••: ••–••
doi:10.1111/eip.12179
Original Article Impact of online resources and social media on help-seeking behaviour in youth with psychotic symptoms Michael L. Birnbaum,1 Kristin Candan,1 Ilana Libby,2 Olivia Pascucci3 and John Kane1 Abstract
and those that were unrelated to treatment.
1
Psychiatry Research, North Shore – Long Island Jewish Health System, The Zucker Hillside Hospital, Glen Oaks, 2College of Osteopathis Medicine, New York Insititute of Technology, Old Westbury, New York, and 3William James Hall, Harvard University, Cambridge, Massachusetts, USA Corresponding author: Dr Michael L. Birnbaum, Department of Psychiatry, The Zucker Hillside Hospital, 75-59 263rd Street, Glen Oaks, NY 11004, USA. Email: [email protected] Received 11 February 2014; accepted 22 July 2014 Dr Kane has been a consultant to Alkermes, Amgen, Astra-Zeneca, Janssen, Pfizer, Eli Lilly, Bristol-Myers Squibb, Dainippon Sumitomo/Sepracor/Sunovion, Johnson & Johnson, Otsuka, Pierre Fabre, Vanda, Proteus, Takeda, Targacept, IntraCellular Therapies, Merck, Lundbeck, Novartis, Roche, Rules Based Medicine, Sunovion, and has received honoraria for lectures from Otsuka, Eli Lilly, Esai, Boehringer-Ingelheim, Bristol-Myers Squibb, Merck and Janssen. He is a shareholder of MedAvante.
Aim: The objective of the study was to explore the content of existing online resources available to informationseeking youth as psychotic symptoms first emerge and determine how these resources may influence initiation of care. Methods: Using 18 hypothetical search terms, developed by the Early Treatment Programme (ETP) staff, we searched three of the most popular websites used by the youth (Google, Facebook and Twitter) and extracted the first five hits from each. Sites were categorized into those that encouraged help seeking, those that potentially contribute to treatment delay, those with an undetermined impact
Conclusion: We must develop innovative, easy-to-access and youthfocused online and social media experiences that encourage symptomatic youth to seek care.
Key words: adolescence, duration of untreated psychosis (DUP), early psychosis, first-episode psychosis, social media.
INTRODUCTION Despite treatment and service advancement, schizophrenia still represents one of the most debilitating and disabling of all mental illnesses.1 Characterized by hallucinations, delusions, and disorganized thinking and behaviour, symptoms typically emerge during precious years of adolescence and young adult development interfering with the establishment of healthy social, educational and vocational foundations.2–4 Despite the severity of symptoms and significant decline in functioning, © 2014 Wiley Publishing Asia Pty Ltd
Results: An alarmingly few of the first five hits from the top three online resources encourage potentially psychotic youth to seek professional evaluation. The majority of our search results yielded unmonitored chat forums that lacked a unified message. The remainder promoted stigma, normalized potentially psychotic experiences or were completely unrelated to mental health.
the most recent systematic review from 2005 found that the time between symptom onset and receiving appropriate care in the United States, on average, is two years.5 Additionally, in the ongoing National Institute Of Mental Health (NIMH)-funded Recovery After Initial Schizophrenia Episode (RAISE) project involving 404 firsts-episode schizophrenia patients (mean age: 21) treated at 34 clinics across the UnitedStates. The median duration of untreated psychosis was 74 weeks (John Kane, pers. comm., 2014). Long duration of untreated psychosis has been shown to independently predict negative outcomes, 1
Online Resources, Social Media and Help-Seeking Behaviour such as hospital readmissions, greater symptom severity and poorer quality of life.5,6 As psychotic symptoms persist and disability accumulates without intervention, youth in the early stages of psychosis are potentially missing a critical opportunity to benefit from early intervention services. Previous reports have attempted to establish demographic characteristics contributing to lengthy duration of untreated psychosis including earlier age of onset, a diagnosis of schizophrenia, male sex and poor premorbid functioning.7,8 Studies have additionally explored systemic contributors to treatment delays including inappropriate referral processes, poor detection and referral delays.9–11 Qualitative studies have attributed several subjective contributors to long treatment delays including lack of education about the signs and symptoms of psychosis, uncertainty about appropriate response to symptoms, stigma and the mistrust of mental health services.12–14 There have been increasing efforts to mitigate contributors of treatment delay, including educating general practitioners to recognize the signs and symptoms of psychosis as well as multi-focused anti-stigma campaigns.15 Little is known, however about the online experience of information-seeking youth as symptoms first emerge and how this experience may influence initiation of care. The Internet has increasingly become a source for obtaining both physical and mental health-related information in the general population,16,17 and in particular for the youth.18 A recent study,19 examining the types of information sought after by people suffering from a mental health issue, found that the most common areas of interest were information on treatment options (81.8%), diagnosis (72.7%) and side effects (81.8%). In addition, through social media, the Internet has increasingly become a source for creating, sharing and exchanging ideas and information. Youth in particular are driving the exponentially growing popularity of social media sites like Facebook and Twitter. According to a recent survey,20 90% of all American teens have used social media placing it ahead of texting (87%), email (77%) and instant messaging (63%). Three-quarters of teens have their own personal social networking site, and nearly one in three teens visits their social networking profile several times a day or more. These trends can be seen worldwide.21 Given that millions of adolescents and young adults are online and sharing ideas on social networking sites, we set out to explore what information might be available to curious young people who are struggling with emerging psychotic experiences. 2
Do existing online resources contribute to lengthy treatment delays or encourage help seeking?
METHODS Early Treatment Programme (ETP) staff members were asked to generate a list of search terms believed to most likely represent possible concerns or questions that youth in the early stages of psychosis might explore. The ETP, located at The Zucker Hillside Hospital in New York, is a new programme dedicated to early psychosis identification and treatment, and consists of a multidisciplinary team of experts all of whom have had extensive experience working with patients in the early stages of psychosis. The 18 search terms listed later are based on the consensus of the ETP director and team leader. For the purposes of this project, we decided to focus our search terms around positive symptoms as such experiences are somewhat more specific to psychosis. Three investigators (MB, OP, and IL) independently searched the 18 terms below using Google and Facebook on 18 June 2013 and Twitter on 1 August 2013. These three sites were chosen as they represent the most popular websites for teens and young adults. We extracted the first five ‘hits’ in each of the three websites and made note of the available content. When searching Facebook, investigators collected and analysed the content of populating Facebook profiles. Searching Twitter yields multiple ‘tweets’ or comments. Each tweet is linked to an individual profile. Investigators collected and analysed the content of these twitter profiles. ETP staff developed four possible result categories depending on the information provided in each website. The first category ‘promotes help seeking’ consisted of websites that immediately encourage information seekers to seek professional consultation and/or provided accurate psycho-education. The second category ‘delays help seeking’ consisted of websites that normalized possible psychotic experiences and/or suggested that professional consultation is not warranted. We additionally placed sites that are potentially stigmatizing in this category as stigma is known to contribute to treatment delays. The third category ‘undetermined impact’ consisted of websites that did not convey a singular message. Examples of such sites are chat rooms in which help seekers post a question or comment and others respond. Finally, the fourth category, ‘unrelated to treatment’, consisted of websites that were completely unrelated to psychiatry or mental health such as musician fan pages. © 2014 Wiley Publishing Asia Pty Ltd
M. L. Birnbaum et al. RESULTS Google The search terms that yielded the greatest number of hits that encouraged help seeking were ‘How do I know if I have schizophrenia?’ ‘Do I have schizophrenia?’ and ‘Am I psychotic?’ (see Tables 1,2). However, also included among the first five hits for these search term results, were sites that provided potentially harmful information. For instance the fifth hit to search term ‘Am I psychotic’ was a non-validated ‘mental health’ screener. Investigators participated as though they were experiencing psychotic symptoms and received the following response: ‘You are SCHIZOPHRENIC. You sometimes hear and see things that are not real. You are often paranoid, and delusional. Everyone is plotting against you, and wants you dead.’ The search terms that yielded the greatest number of hits that might contribute to treatment delay were ‘Is it normal to hear voices?’ ‘I see things that others can’t see’ and ‘Someone is putting thoughts in my head.’ When searching ‘Is it normal to hear voices?’ into Google, three of the first five hits normalized auditory experiences and did not initially recommend consultation. Similarly, when searching ‘I see things that others can’t see’, two out of the first five hits challenged the notion that ‘psychic experiences’ are abnormal. The remaining search terms yielded ‘undetermined impact’ or ‘unrelated to treatment’ sites. The majority of ‘undetermined impact’ sites consisted of chat forums. One noteworthy example includes the following post from an anonymous user: ‘I quite often experience out of control thoughts were I am questioning myself in the form of someone else talking to me. It feels as if someone hacked into my brain and is sitting at their computer with a microphone saying things into it that are playing back in my brain.’ This person asked for ‘thoughts/ideas/ suggestions please.’ Unfortunately, few of the replies suggested seeking professional consultation. Facebook Entering search terms into Facebook creates a list of Facebook pages that have been created with these specific words in their title or name. If no (or few) Facebook pages exist for a search term, Facebook searches for this subject using Bing as a search engine. None of our 18 search terms yielded Facebook pages that provided educational material, encouraged consultation or connected users to a professional mental health Facebook page. When © 2014 Wiley Publishing Asia Pty Ltd
searching ‘do I have schizophrenia?’ the first two Facebook pages to populate include ‘I have schizophrenia and so do I’ as well as ‘Roses are red, violets are blue, I have schizophrenia and so do I.’ Both pages display a stigmatizing photo of a blindfolded man in a straight jacket. Facebook pages exist for the search terms ‘Am I crazy?’, ‘I hear voices,’ ‘things sound different than usual’ and ‘things look different than usual’; however, none of them are related to psychosis or treatment. Closed groups (members only) exist entitled ‘why do I hear voices in my head? They are scaring me!’ and ‘I think people are following me at night, so I sometimes try to trick them.’ These pages appear when searching the terms ‘I hear voices’ and ‘It feels like people are following me’, respectively. When deviating slightly from our search terms by searching ‘schizophrenia’ alone, the first three pages to populate are potentially helpful resources. The first is a brief psychosis screener entitled ‘schizophrenia test and early psychosis indicator (STEPI)’. After completing this questionnaire, the results are scored and recommendations are made including seeking professional help if one’s score is above a certain threshold. The second and third are open and closed (members only) Facebook pages entitled ‘schizophrenia’. We were unable to view the content of the closed group. The open group appears to be an online support community for individuals with schizophrenia. Unfortunately, in addition to these three pages other stigmatizing pages appear including those mentioned earlier (I have schizophrenia and so do I). Twitter Entering search terms into Twitter, generates a list of recently posted individual ‘tweets’. These ‘tweets’ or comments are updated in real time and change regularly as new comments are posted. When searching ‘I hear voices’ for example, a list of ‘tweets’ is generated from individuals who recently posted the same (or similar) words or phrase. Using Twitter, our search terms yielded various comments (tweets) that consisted of some or all the words we used to search. We were then able to click on individual profiles of the people posting those tweets and were brought to their respective profile page. At the time of our Twitter search, only three of our 18 search terms yielded one tweet each (and corresponding twitter page) that promoted help seeking. These were ‘Is it normal to hear voices?’, ‘How do I know if I have schizophrenia?’ and ‘Do I have schizophrenia?’ These twitter pages were operated by either individuals posting about their 3
Online Resources, Social Media and Help-Seeking Behaviour TABLE 1. Internet search results Search term
Is it normal to hear voices?
How do I know if I have schizophrenia?
Do I have schizophrenia?
Am I psychotic?
Am I crazy?
Someone is controlling my body.
I hear voices.
I see things that others can’t see.
I hear things that others can’t hear.
Why do I hear voices?
Am I going crazy?
Someone is putting thoughts in my head.
Someone is taking away my thoughts.
I feel like people are following me.
I’m thinking weird thoughts.
My brain is acting strange.
Things sound different than usual.
Things look different than usual.
4
Source
Promotes help seeking
Delays help seeking
Undetermined impact
Unrelated to treatment
Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter
0 0 1 4 2 1 4 2 1 2 0 0 1 0 0 1 1 0 0 0 0 1 0 0 0 0 0 0 1 0 1 0 0 1 0 0 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0
3 3 1 0 0 0 0 2 1 1 0 0 0 0 0 1 3 0 1 0 0 2 3 0 0 0 0 2 1 0 0 0 0 2 0 0 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0
2 2 0 1 3 0 1 1 3 2 4 0 0 0 0 2 1 1 0 0 0 1 1 2 2 2 0 3 3 1 2 0 0 3 2 0 1 1 1 3 3 0 5 4 0 0 0 0 0 0 0 0 0 0
0 0 3 0 0 4 0 0 0 0 1 5 4 5 5 1 0 4 4 5 5 1 1 3 3 3 5 0 0 4 2 5 5 0 3 5 2 2 4 0 2 5 0 1 5 5 5 5 5 5 5 5 5 5
© 2014 Wiley Publishing Asia Pty Ltd
M. L. Birnbaum et al. TABLE 2. Search terms ‘Is it normal to hear voices?’ ‘How do I know if I have schizophrenia?’ ‘Do I have schizophrenia?’ ‘Am I psychotic?’ ‘Am I crazy?’ ‘Someone is controlling my body’ ‘I hear voices’ ‘I see things that others can’t see’ ‘I hear things that others can’t hear’ ‘Why do I hear voices?’ ‘Am I going crazy?’ ‘Someone is putting thoughts in my head’ ‘Someone is taking away my thoughts’ ‘It feels like people are following me’ ‘I’m thinking weird thoughts’ ‘My brain is acting strange’ ‘Things sound different than usual’ ‘Things look different than usual’
experiences with mental illness (n = 1) or individuals offering free medical advice (n = 2). The remaining four out of the first five hits consisted of individual tweets such as ‘Is it normal to hear voices when you are tired?’ or ‘Do I have schizophrenia?’, with no specific noted replies or suggestions to seek professional consultation. The vast majority of search term hits were unrelated to mental health treatment often using words like ‘psychosis’ or ‘schizophrenia’ in an inappropriate or stigmatizing fashion.
DISCUSSION Given that millions of American youth are online and using social media daily, we set out to explore what resources might be available to informationseeking individuals with new or emerging psychotic symptoms. Using 18 hypothetical search terms, developed by ETP staff, we searched three of the most popular websites used by the youth and extracted the first five hits from each. Despite the abundance of information available on the web through Google, Facebook and Twitter, our results suggest that alarmingly few of the top five results from the top three online resources use by the youth encourage potentially psychotic youth to seek professional evaluation. The majority of our search results yielded unmonitored chat forums that lacked a unified message. The remainder promoted stigma, normalized potentially psychotic experiences or were completely unrelated to mental health. © 2014 Wiley Publishing Asia Pty Ltd
Searching for ‘schizophrenia’ or ‘psychosis’ either alone or as part of a question/sentence was most likely to yield appropriate educational material and encourage consultation. These terms are highly specific medical conditions and it is, therefore, not surprising that they yield mental illness-focused results. Unfortunately, however, by the time the youth are searching for information about schizophrenia or psychosis, it is likely that the illness has already progressed to an extent that these youth have already been given a diagnosis. As our goal is to encourage help seeking and consultation at the earliest stage of illness, it would be best if appropriate online mental health resources were made available to individuals who are making an effort to understand new and unusual experiences. While over the past decade a variety of excellent professional mental health social media pages have been developed, our results suggests that they are not easily found and accessed. Great educational material does exist on social media; however, in our current study, few of these sites were among our search results. This suggests that we are not yet using these resources to their full potential. Social media has transformed the way young people interact, communicate and share information. These forums offer the youth the chance to connect without pressure, get support from professionals and peers, and overcome stigma. As the social media’s popularity and utility continues to grow, mental health clinicians must learn how to adapt to ever-changing technology. Schizophrenia and other severe mental disorders often emerge during adolescence and young adulthood. One would imagine that those in the early stages of psychosis are online alongside their peers. Early psychosis intervention clinicians must understand and appreciate these technologies and how they could better serve our patients. We need mental health resources that are consistent and unified, connected with multiple possible search terms and populate early as search results. These pages need to be easier to find, more active and highly accessible. We need to consider purchasing search terms and advertisement space in order to redirect users to appropriate websites. We need to enlist search engine and social media experts in order to help educate clinicians and develop strategies to ensure that helpful and appropriate resources appear as top search results. We should consider including the youth in the creation of developmentally appropriate websites and educational resources to ensure that they are properly engaging to our young target audience. 5
Online Resources, Social Media and Help-Seeking Behaviour Limitations This project has several noteworthy limitations. Firstly, it is unclear exactly how youth with earlyphase psychosis are using and interacting with the Internet and social media in order to obtain information regarding their experiences. These findings are pertinent primarily to youth who are attempting to access information online. Additionally, we do not yet know the specific search terms that are being explored by psychotic youth. It is unclear if in fact the terms used represent an accurate portrayal of what the youth might search. Service users were not directly questioned regarding the appropriateness of the terms used. It is likely that search terms may differ based on a number of factors including vocabulary and country of origin. For example, while the word ‘mad’ is popularly used in the United Kingdom to denote mental illness, it is much less often used in the United States. In addition, search results may vary significantly depending on a variety of factors including geography and previous searches. Although we limited our search terms to positive symptoms, many young people with early psychosis also experience negative symptoms, depression, anxiety and substance abuse. These symptoms were not captured in the search terms used in this study. Finally, given the ever-changing nature of online information, our findings only apply to the days the search was carried out. Future studies should consider conducting searches on multiple days in order to more reliably capture the online experience. Future direction We aim to inform the development of novel early detection and intervention strategies for youth with mental illness. More research needs to be done to better understand how youth with psychosis are using the Internet and social media to search for answers, reach out for help, share information and express themselves. Additionally, more research needs to determine the potential impact of early and appropriate online educational material on help-seeking behaviours in youth. We need to better understand if altering the online experience of the youth in the early stages of psychosis might in fact promote reductions in untreated psychosis. Finally, we need to better understand optimal strategies of using the Internet and social media to connect with struggling youth. We hypothesize that youth with psychosis are interacting with social media in a distinct and unique manner as compared with those without psychosis. We at the ETP are currently exploring if a 6
psychosis-specific signal could be detected in the words, grammar and conversation topics of youth with psychosis. If this is accurate, social media may additionally prove to play an important role in identifying psychotic youth and would help capture those youth who are not necessarily seeking help or information online. Much like ad agencies target consumers based on individual topics of discussion, places visited and things that are liked and done, mental health professionals could perhaps target individuals who are displaying early warning signs of psychotic illness. An interesting question would be whether or not it is possible and feasible to selectively identify and target those individuals who may benefit from psychiatric intervention, but have not yet presented for care. An advertisement offering an online consultation might prove to be an easy and palatable way of introducing the possibility of treatment as well as screen out false positives. This would require more research and exploration as a delicate line exists between intrusiveness and concern. Given the potentially devastating outcome of untreated psychosis, we must explore innovative and novel strategies for early identification, engagement and care. Waiting for the youth to present themselves to our clinics is one of the many failures of the current mental health system. Mental health professionals working with young people need a greater understanding and appreciation of social media. As we consider developing new strategies to reduce the duration of untreated psychosis, we must consider changing the online experience of youth.
REFERENCES 1. Kane JM, Correll CU. Past and present progress in the pharmacologic treatment of schizophrenia. J Clin Psychiatry 2010; 79: 1115–24. 2. American Psychiatric Association. Diagnostic and statistical manual of mental disorders, Revised 4th edn. Washington, DC: Author, 2000. 3. Lieberman JA. Signs and symptoms: what can they tell us about the clinical course and pathophysiologic processes of schizophrenia? Arch Gen Psychiatry 1995; 552: 361–3. 4. Schimmelmann BG, Schmidt SJ, Carbon M, Correll CU. A rational, evidence informed approach to psychopharmacology for adolescents with early onset, first episode psychoses. Curr Opin Psychiatry 2013; 26: 219–30. 5. Marshall M, Lewis S, Lockwood A, Drake R, Jones P, Croudace T. Association between duration of untreated psychosis and outcome in cohorts of first-episode patients: a systematic review. Arch Gen Psychiatry 2005; 62: 975–83. 6. Perkins D, Gu H, Boteva K, Lieberman J. Relationship between duration of untreated psychosis and outcome in first-episode schizophrenia: a critical review and meta-analysis. Am J Psychiatry 2005; 162: 1785–804. © 2014 Wiley Publishing Asia Pty Ltd
M. L. Birnbaum et al. 7. Bechard-Evans L, Schmitz N, Abadi S, Joober R, King S, Malla A. Determinants of help-seeking and system related components of delay in the treatment of first-episode psychosis. Schizophr Res 2007; 96: 206–14. 8. O’Callaghan E, Turner N, Renwick L et al. First episode psychosis and the trail to secondary care: help-seeking and health-system delays. Soc Psychiatry Psychiatr Epidemiol 2010; 45: 381–91. 9. Anderson K, Fuhrer R, Malla AK. The pathways to mental health care of first-episode psychosis patients: a systematic review. Psychol Med 2010; 40: 1585–97. 10. Brunet K, Birchwood M, Lester H, Thornhill K. Delays in mental health services and duration of untreated psychosis. Psychiatr Bull 2007; 31: 408–10. 11. Skeate A, Jackson C, Birchwood M, Jones C. Duration of untreated psychosis and pathways to care in first-episode psychosis: investigation of help-seeking behavior in primary care. Br J Psychiatry Suppl 2002; 43: 73–7. 12. Franz L, Carter T, Leiner A, Bergner E, Thompson N, Compton M. Stigma and treatment delay in first-episode psychosis: a grounded theory study. Early Interv Psychiatry 2010; 4: 47–56. 13. Judge A, Estroff S, Perkins D, Penn D. Recognizing and responding to early psychosis: a qualitative analysis of individual narratives. Psychiatr Serv 2008; 59: 96–9.
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14. Tanskanen S, Morant N, Hinton M et al. Service user and carer experiences of seeking help for a first episode of psychosis: a UK qualitative study. BMC Psychiatry 2011; 11: 157. 15. Lloyd-Evans B, Crosby M, Stockton S et al. Initiatives to shorten duration of untreated psychosis: systematic review. Br J Psychiatry 2011; 198: 256–63. 16. Baker L, Wagner TH, Singer S, Bundorf MK. Use of the Internet and e-mail for health care information: results from a national survey. JAMA 2003; 289: 2400–6. 17. Powell J, Clarke A. Internet information-seeking in mental health – population survey. Br J Psychiatry 2006; 189: 273– 7. 18. Skinner H, Biscope S, Poland B. Quality of Internet access: barrier behind Internet use statistics. Soc Sci Med 2003; 57: 875–80. 19. Khazaal Y, Chatton A, Cochand S et al. Internet use by patients with psychiatric disorders in search for general and medical informations. Psychiatr Q 2008; 79: 301–9. 20. Common Sense Media. Social Media, Social Life: How Teens View Their Digital Lives. 2012; San Francisco, CA. 21. Pew Research Center. Global Publics Embrace Social Networking. 2010; Washington, DC.
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Early Intervention in Psychiatry 2014; ••: ••–••
doi:10.1111/eip.12179
Original Article Impact of online resources and social media on help-seeking behaviour in youth with psychotic symptoms Michael L. Birnbaum,1 Kristin Candan,1 Ilana Libby,2 Olivia Pascucci3 and John Kane1 Abstract
and those that were unrelated to treatment.
1
Psychiatry Research, North Shore – Long Island Jewish Health System, The Zucker Hillside Hospital, Glen Oaks, 2College of Osteopathis Medicine, New York Insititute of Technology, Old Westbury, New York, and 3William James Hall, Harvard University, Cambridge, Massachusetts, USA Corresponding author: Dr Michael L. Birnbaum, Department of Psychiatry, The Zucker Hillside Hospital, 75-59 263rd Street, Glen Oaks, NY 11004, USA. Email: [email protected] Received 11 February 2014; accepted 22 July 2014 Dr Kane has been a consultant to Alkermes, Amgen, Astra-Zeneca, Janssen, Pfizer, Eli Lilly, Bristol-Myers Squibb, Dainippon Sumitomo/Sepracor/Sunovion, Johnson & Johnson, Otsuka, Pierre Fabre, Vanda, Proteus, Takeda, Targacept, IntraCellular Therapies, Merck, Lundbeck, Novartis, Roche, Rules Based Medicine, Sunovion, and has received honoraria for lectures from Otsuka, Eli Lilly, Esai, Boehringer-Ingelheim, Bristol-Myers Squibb, Merck and Janssen. He is a shareholder of MedAvante.
Aim: The objective of the study was to explore the content of existing online resources available to informationseeking youth as psychotic symptoms first emerge and determine how these resources may influence initiation of care. Methods: Using 18 hypothetical search terms, developed by the Early Treatment Programme (ETP) staff, we searched three of the most popular websites used by the youth (Google, Facebook and Twitter) and extracted the first five hits from each. Sites were categorized into those that encouraged help seeking, those that potentially contribute to treatment delay, those with an undetermined impact
Conclusion: We must develop innovative, easy-to-access and youthfocused online and social media experiences that encourage symptomatic youth to seek care.
Key words: adolescence, duration of untreated psychosis (DUP), early psychosis, first-episode psychosis, social media.
INTRODUCTION Despite treatment and service advancement, schizophrenia still represents one of the most debilitating and disabling of all mental illnesses.1 Characterized by hallucinations, delusions, and disorganized thinking and behaviour, symptoms typically emerge during precious years of adolescence and young adult development interfering with the establishment of healthy social, educational and vocational foundations.2–4 Despite the severity of symptoms and significant decline in functioning, © 2014 Wiley Publishing Asia Pty Ltd
Results: An alarmingly few of the first five hits from the top three online resources encourage potentially psychotic youth to seek professional evaluation. The majority of our search results yielded unmonitored chat forums that lacked a unified message. The remainder promoted stigma, normalized potentially psychotic experiences or were completely unrelated to mental health.
the most recent systematic review from 2005 found that the time between symptom onset and receiving appropriate care in the United States, on average, is two years.5 Additionally, in the ongoing National Institute Of Mental Health (NIMH)-funded Recovery After Initial Schizophrenia Episode (RAISE) project involving 404 firsts-episode schizophrenia patients (mean age: 21) treated at 34 clinics across the UnitedStates. The median duration of untreated psychosis was 74 weeks (John Kane, pers. comm., 2014). Long duration of untreated psychosis has been shown to independently predict negative outcomes, 1
Online Resources, Social Media and Help-Seeking Behaviour such as hospital readmissions, greater symptom severity and poorer quality of life.5,6 As psychotic symptoms persist and disability accumulates without intervention, youth in the early stages of psychosis are potentially missing a critical opportunity to benefit from early intervention services. Previous reports have attempted to establish demographic characteristics contributing to lengthy duration of untreated psychosis including earlier age of onset, a diagnosis of schizophrenia, male sex and poor premorbid functioning.7,8 Studies have additionally explored systemic contributors to treatment delays including inappropriate referral processes, poor detection and referral delays.9–11 Qualitative studies have attributed several subjective contributors to long treatment delays including lack of education about the signs and symptoms of psychosis, uncertainty about appropriate response to symptoms, stigma and the mistrust of mental health services.12–14 There have been increasing efforts to mitigate contributors of treatment delay, including educating general practitioners to recognize the signs and symptoms of psychosis as well as multi-focused anti-stigma campaigns.15 Little is known, however about the online experience of information-seeking youth as symptoms first emerge and how this experience may influence initiation of care. The Internet has increasingly become a source for obtaining both physical and mental health-related information in the general population,16,17 and in particular for the youth.18 A recent study,19 examining the types of information sought after by people suffering from a mental health issue, found that the most common areas of interest were information on treatment options (81.8%), diagnosis (72.7%) and side effects (81.8%). In addition, through social media, the Internet has increasingly become a source for creating, sharing and exchanging ideas and information. Youth in particular are driving the exponentially growing popularity of social media sites like Facebook and Twitter. According to a recent survey,20 90% of all American teens have used social media placing it ahead of texting (87%), email (77%) and instant messaging (63%). Three-quarters of teens have their own personal social networking site, and nearly one in three teens visits their social networking profile several times a day or more. These trends can be seen worldwide.21 Given that millions of adolescents and young adults are online and sharing ideas on social networking sites, we set out to explore what information might be available to curious young people who are struggling with emerging psychotic experiences. 2
Do existing online resources contribute to lengthy treatment delays or encourage help seeking?
METHODS Early Treatment Programme (ETP) staff members were asked to generate a list of search terms believed to most likely represent possible concerns or questions that youth in the early stages of psychosis might explore. The ETP, located at The Zucker Hillside Hospital in New York, is a new programme dedicated to early psychosis identification and treatment, and consists of a multidisciplinary team of experts all of whom have had extensive experience working with patients in the early stages of psychosis. The 18 search terms listed later are based on the consensus of the ETP director and team leader. For the purposes of this project, we decided to focus our search terms around positive symptoms as such experiences are somewhat more specific to psychosis. Three investigators (MB, OP, and IL) independently searched the 18 terms below using Google and Facebook on 18 June 2013 and Twitter on 1 August 2013. These three sites were chosen as they represent the most popular websites for teens and young adults. We extracted the first five ‘hits’ in each of the three websites and made note of the available content. When searching Facebook, investigators collected and analysed the content of populating Facebook profiles. Searching Twitter yields multiple ‘tweets’ or comments. Each tweet is linked to an individual profile. Investigators collected and analysed the content of these twitter profiles. ETP staff developed four possible result categories depending on the information provided in each website. The first category ‘promotes help seeking’ consisted of websites that immediately encourage information seekers to seek professional consultation and/or provided accurate psycho-education. The second category ‘delays help seeking’ consisted of websites that normalized possible psychotic experiences and/or suggested that professional consultation is not warranted. We additionally placed sites that are potentially stigmatizing in this category as stigma is known to contribute to treatment delays. The third category ‘undetermined impact’ consisted of websites that did not convey a singular message. Examples of such sites are chat rooms in which help seekers post a question or comment and others respond. Finally, the fourth category, ‘unrelated to treatment’, consisted of websites that were completely unrelated to psychiatry or mental health such as musician fan pages. © 2014 Wiley Publishing Asia Pty Ltd
M. L. Birnbaum et al. RESULTS Google The search terms that yielded the greatest number of hits that encouraged help seeking were ‘How do I know if I have schizophrenia?’ ‘Do I have schizophrenia?’ and ‘Am I psychotic?’ (see Tables 1,2). However, also included among the first five hits for these search term results, were sites that provided potentially harmful information. For instance the fifth hit to search term ‘Am I psychotic’ was a non-validated ‘mental health’ screener. Investigators participated as though they were experiencing psychotic symptoms and received the following response: ‘You are SCHIZOPHRENIC. You sometimes hear and see things that are not real. You are often paranoid, and delusional. Everyone is plotting against you, and wants you dead.’ The search terms that yielded the greatest number of hits that might contribute to treatment delay were ‘Is it normal to hear voices?’ ‘I see things that others can’t see’ and ‘Someone is putting thoughts in my head.’ When searching ‘Is it normal to hear voices?’ into Google, three of the first five hits normalized auditory experiences and did not initially recommend consultation. Similarly, when searching ‘I see things that others can’t see’, two out of the first five hits challenged the notion that ‘psychic experiences’ are abnormal. The remaining search terms yielded ‘undetermined impact’ or ‘unrelated to treatment’ sites. The majority of ‘undetermined impact’ sites consisted of chat forums. One noteworthy example includes the following post from an anonymous user: ‘I quite often experience out of control thoughts were I am questioning myself in the form of someone else talking to me. It feels as if someone hacked into my brain and is sitting at their computer with a microphone saying things into it that are playing back in my brain.’ This person asked for ‘thoughts/ideas/ suggestions please.’ Unfortunately, few of the replies suggested seeking professional consultation. Facebook Entering search terms into Facebook creates a list of Facebook pages that have been created with these specific words in their title or name. If no (or few) Facebook pages exist for a search term, Facebook searches for this subject using Bing as a search engine. None of our 18 search terms yielded Facebook pages that provided educational material, encouraged consultation or connected users to a professional mental health Facebook page. When © 2014 Wiley Publishing Asia Pty Ltd
searching ‘do I have schizophrenia?’ the first two Facebook pages to populate include ‘I have schizophrenia and so do I’ as well as ‘Roses are red, violets are blue, I have schizophrenia and so do I.’ Both pages display a stigmatizing photo of a blindfolded man in a straight jacket. Facebook pages exist for the search terms ‘Am I crazy?’, ‘I hear voices,’ ‘things sound different than usual’ and ‘things look different than usual’; however, none of them are related to psychosis or treatment. Closed groups (members only) exist entitled ‘why do I hear voices in my head? They are scaring me!’ and ‘I think people are following me at night, so I sometimes try to trick them.’ These pages appear when searching the terms ‘I hear voices’ and ‘It feels like people are following me’, respectively. When deviating slightly from our search terms by searching ‘schizophrenia’ alone, the first three pages to populate are potentially helpful resources. The first is a brief psychosis screener entitled ‘schizophrenia test and early psychosis indicator (STEPI)’. After completing this questionnaire, the results are scored and recommendations are made including seeking professional help if one’s score is above a certain threshold. The second and third are open and closed (members only) Facebook pages entitled ‘schizophrenia’. We were unable to view the content of the closed group. The open group appears to be an online support community for individuals with schizophrenia. Unfortunately, in addition to these three pages other stigmatizing pages appear including those mentioned earlier (I have schizophrenia and so do I). Twitter Entering search terms into Twitter, generates a list of recently posted individual ‘tweets’. These ‘tweets’ or comments are updated in real time and change regularly as new comments are posted. When searching ‘I hear voices’ for example, a list of ‘tweets’ is generated from individuals who recently posted the same (or similar) words or phrase. Using Twitter, our search terms yielded various comments (tweets) that consisted of some or all the words we used to search. We were then able to click on individual profiles of the people posting those tweets and were brought to their respective profile page. At the time of our Twitter search, only three of our 18 search terms yielded one tweet each (and corresponding twitter page) that promoted help seeking. These were ‘Is it normal to hear voices?’, ‘How do I know if I have schizophrenia?’ and ‘Do I have schizophrenia?’ These twitter pages were operated by either individuals posting about their 3
Online Resources, Social Media and Help-Seeking Behaviour TABLE 1. Internet search results Search term
Is it normal to hear voices?
How do I know if I have schizophrenia?
Do I have schizophrenia?
Am I psychotic?
Am I crazy?
Someone is controlling my body.
I hear voices.
I see things that others can’t see.
I hear things that others can’t hear.
Why do I hear voices?
Am I going crazy?
Someone is putting thoughts in my head.
Someone is taking away my thoughts.
I feel like people are following me.
I’m thinking weird thoughts.
My brain is acting strange.
Things sound different than usual.
Things look different than usual.
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Source
Promotes help seeking
Delays help seeking
Undetermined impact
Unrelated to treatment
Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter Google Facebook Twitter
0 0 1 4 2 1 4 2 1 2 0 0 1 0 0 1 1 0 0 0 0 1 0 0 0 0 0 0 1 0 1 0 0 1 0 0 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0
3 3 1 0 0 0 0 2 1 1 0 0 0 0 0 1 3 0 1 0 0 2 3 0 0 0 0 2 1 0 0 0 0 2 0 0 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0
2 2 0 1 3 0 1 1 3 2 4 0 0 0 0 2 1 1 0 0 0 1 1 2 2 2 0 3 3 1 2 0 0 3 2 0 1 1 1 3 3 0 5 4 0 0 0 0 0 0 0 0 0 0
0 0 3 0 0 4 0 0 0 0 1 5 4 5 5 1 0 4 4 5 5 1 1 3 3 3 5 0 0 4 2 5 5 0 3 5 2 2 4 0 2 5 0 1 5 5 5 5 5 5 5 5 5 5
© 2014 Wiley Publishing Asia Pty Ltd
M. L. Birnbaum et al. TABLE 2. Search terms ‘Is it normal to hear voices?’ ‘How do I know if I have schizophrenia?’ ‘Do I have schizophrenia?’ ‘Am I psychotic?’ ‘Am I crazy?’ ‘Someone is controlling my body’ ‘I hear voices’ ‘I see things that others can’t see’ ‘I hear things that others can’t hear’ ‘Why do I hear voices?’ ‘Am I going crazy?’ ‘Someone is putting thoughts in my head’ ‘Someone is taking away my thoughts’ ‘It feels like people are following me’ ‘I’m thinking weird thoughts’ ‘My brain is acting strange’ ‘Things sound different than usual’ ‘Things look different than usual’
experiences with mental illness (n = 1) or individuals offering free medical advice (n = 2). The remaining four out of the first five hits consisted of individual tweets such as ‘Is it normal to hear voices when you are tired?’ or ‘Do I have schizophrenia?’, with no specific noted replies or suggestions to seek professional consultation. The vast majority of search term hits were unrelated to mental health treatment often using words like ‘psychosis’ or ‘schizophrenia’ in an inappropriate or stigmatizing fashion.
DISCUSSION Given that millions of American youth are online and using social media daily, we set out to explore what resources might be available to informationseeking individuals with new or emerging psychotic symptoms. Using 18 hypothetical search terms, developed by ETP staff, we searched three of the most popular websites used by the youth and extracted the first five hits from each. Despite the abundance of information available on the web through Google, Facebook and Twitter, our results suggest that alarmingly few of the top five results from the top three online resources use by the youth encourage potentially psychotic youth to seek professional evaluation. The majority of our search results yielded unmonitored chat forums that lacked a unified message. The remainder promoted stigma, normalized potentially psychotic experiences or were completely unrelated to mental health. © 2014 Wiley Publishing Asia Pty Ltd
Searching for ‘schizophrenia’ or ‘psychosis’ either alone or as part of a question/sentence was most likely to yield appropriate educational material and encourage consultation. These terms are highly specific medical conditions and it is, therefore, not surprising that they yield mental illness-focused results. Unfortunately, however, by the time the youth are searching for information about schizophrenia or psychosis, it is likely that the illness has already progressed to an extent that these youth have already been given a diagnosis. As our goal is to encourage help seeking and consultation at the earliest stage of illness, it would be best if appropriate online mental health resources were made available to individuals who are making an effort to understand new and unusual experiences. While over the past decade a variety of excellent professional mental health social media pages have been developed, our results suggests that they are not easily found and accessed. Great educational material does exist on social media; however, in our current study, few of these sites were among our search results. This suggests that we are not yet using these resources to their full potential. Social media has transformed the way young people interact, communicate and share information. These forums offer the youth the chance to connect without pressure, get support from professionals and peers, and overcome stigma. As the social media’s popularity and utility continues to grow, mental health clinicians must learn how to adapt to ever-changing technology. Schizophrenia and other severe mental disorders often emerge during adolescence and young adulthood. One would imagine that those in the early stages of psychosis are online alongside their peers. Early psychosis intervention clinicians must understand and appreciate these technologies and how they could better serve our patients. We need mental health resources that are consistent and unified, connected with multiple possible search terms and populate early as search results. These pages need to be easier to find, more active and highly accessible. We need to consider purchasing search terms and advertisement space in order to redirect users to appropriate websites. We need to enlist search engine and social media experts in order to help educate clinicians and develop strategies to ensure that helpful and appropriate resources appear as top search results. We should consider including the youth in the creation of developmentally appropriate websites and educational resources to ensure that they are properly engaging to our young target audience. 5
Online Resources, Social Media and Help-Seeking Behaviour Limitations This project has several noteworthy limitations. Firstly, it is unclear exactly how youth with earlyphase psychosis are using and interacting with the Internet and social media in order to obtain information regarding their experiences. These findings are pertinent primarily to youth who are attempting to access information online. Additionally, we do not yet know the specific search terms that are being explored by psychotic youth. It is unclear if in fact the terms used represent an accurate portrayal of what the youth might search. Service users were not directly questioned regarding the appropriateness of the terms used. It is likely that search terms may differ based on a number of factors including vocabulary and country of origin. For example, while the word ‘mad’ is popularly used in the United Kingdom to denote mental illness, it is much less often used in the United States. In addition, search results may vary significantly depending on a variety of factors including geography and previous searches. Although we limited our search terms to positive symptoms, many young people with early psychosis also experience negative symptoms, depression, anxiety and substance abuse. These symptoms were not captured in the search terms used in this study. Finally, given the ever-changing nature of online information, our findings only apply to the days the search was carried out. Future studies should consider conducting searches on multiple days in order to more reliably capture the online experience. Future direction We aim to inform the development of novel early detection and intervention strategies for youth with mental illness. More research needs to be done to better understand how youth with psychosis are using the Internet and social media to search for answers, reach out for help, share information and express themselves. Additionally, more research needs to determine the potential impact of early and appropriate online educational material on help-seeking behaviours in youth. We need to better understand if altering the online experience of the youth in the early stages of psychosis might in fact promote reductions in untreated psychosis. Finally, we need to better understand optimal strategies of using the Internet and social media to connect with struggling youth. We hypothesize that youth with psychosis are interacting with social media in a distinct and unique manner as compared with those without psychosis. We at the ETP are currently exploring if a 6
psychosis-specific signal could be detected in the words, grammar and conversation topics of youth with psychosis. If this is accurate, social media may additionally prove to play an important role in identifying psychotic youth and would help capture those youth who are not necessarily seeking help or information online. Much like ad agencies target consumers based on individual topics of discussion, places visited and things that are liked and done, mental health professionals could perhaps target individuals who are displaying early warning signs of psychotic illness. An interesting question would be whether or not it is possible and feasible to selectively identify and target those individuals who may benefit from psychiatric intervention, but have not yet presented for care. An advertisement offering an online consultation might prove to be an easy and palatable way of introducing the possibility of treatment as well as screen out false positives. This would require more research and exploration as a delicate line exists between intrusiveness and concern. Given the potentially devastating outcome of untreated psychosis, we must explore innovative and novel strategies for early identification, engagement and care. Waiting for the youth to present themselves to our clinics is one of the many failures of the current mental health system. Mental health professionals working with young people need a greater understanding and appreciation of social media. As we consider developing new strategies to reduce the duration of untreated psychosis, we must consider changing the online experience of youth.
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