Teens, Health, and the Internet

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Teens, Health, and the Internet

• Lalita K. Suzuki,.
• Childrens Digital Media Center, UCLA.
• HopeLab
• Project funded by HopeLab
• and a grant from NSF to establish the Childrens
  Digital Media Center
• Thanks to James Pennebaker Stephanie Morgan

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Giving and Receiving Peer Advice Online An
Examination of Online Teen Health Bulletin Boards
Lalita K. Suzuki, Ph.D. HopeLab Childrens
Digital Media Center, UCLA Jerel P.
Calzo Childrens Digital Media Center,
UCLA Journal of Applied Developmental
Psychology, in press Society for Research on
Adolescence, 2004

• March 12, 2004

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Adolescent Questions

• Questions that are most distressing
• relationships, weight, depression, suicidal
  thoughts, confusion about future, health (e.g.,
  Boldero Fallon, 1995 Dubow et al., 1990
  Puskar et al., 1999).
• Questions that are most desired from physicians
• physical fitness, stress, nutrition, STDs,
  contraception, alcohol, and good eating behaviors
  most desired from physicians
• (e.g., Ackard Neumark-Sztainer, 2001
  Joffe et al., 1988 Klein Wilson, 2002)

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However

• Teens often hesitate to request personal
  information from physicians (Ackard
  Neumark-Sztainer, 2001 Cheng et al., 1993)
• 82 of youths feel that confidentiality is very
  important when seeking health information
  (Rideout, 2002).
• 58 of teens have concerns that they keep from
  their parents
• 69 have health concerns that they do not want to
  disclose to friends (Cheng et al., 1993)

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The Internet as a Health Information Source

• The Internet enables teens to overcome barriers
  to help-seeking behavior (Anderson, 1995)
• The Web allows anonymous searching of information
  24-hours a day
• Health information can be found on web pages,
  newsgroups, listservs, chat rooms
• In this study, we focused on electronic bulletin
  boards

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We looked at

• The types of questions that were most popular
  overall
• The types of questions that elicited the most
  replies
• The types of questions that elicited the most
  lurks
• The types of replies that were most popular

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Question Categories

• Parents/Adults
• Peers
• Romantic Relationships
• Personality/Mental Health
• Grooming
• Body Image/Exercise
• Physical Health

• Sexual Health
• Pregnancy/Birth Control
• Sexuality- Interpersonal
• Sexuality- Preferences/Techniques
• Physical/Sexual Abuse
• Drugs/Alcohol
• School

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Reply Categories

• Personal Experience
• Emotional Support
• Concrete Information
• Advice
• Personal Opinion
• Urges Medical/Professional Help

• Negative Responses
• Requests More Information
• New Question
• Defends Position
• Thanks
• Other

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Views or Lurks

• The number of times that people clicked on a
  thread to read it (even if they did not respond)
  was noted

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Results

• 452 people posted questions and/or responses
• 273 questions and 1,752 replies posted
• On average, 4.5 replies per post

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Total Number for Each Question Type
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Number of Views for Each Question Type
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Percentage of Reply Types

• Personal Opinion (63)
• Advice (44)
• Concrete Info (37)
• Personal Experience (33)
• Emotional Support (12)
• Request more Info (8)

• Urges Medical/ (6)
• Professional Help
• Negative Response (6)
• New Question (4)
• Defends Position (4)
• Thanks (4)
• Other (2)

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Conclusions

• Bulletin boards allowed teens to post questions
  and replies about the sensitive topics (e.g.
  sexual health, pregnancy, romantic relations)
• Negative responses were rare (6), and when they
  occurred, were only mildly offensive
• Role of moderator?
• Health care providers can help by increasing
  adolescents awareness of these sites
• And actively participating to ensure that sites
  provide supportive and accurate information

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Online Illness NarrativesAn Examination of Home
Pages Created by Teens with Cancer

• Lalita K. Suzuki, Ph.D. .
• Childrens Digital Media Center, UCLA
• HopeLab
• Ivan Beale, Ph. D.
• HopeLab
• Project funded by HopeLab
• and a grant from NSF to establish the Childrens
  Digital Media Center
• Thanks to James Pennebaker Stephanie Morgan

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Coping Aids for Adolescents with Cancer

• Self Presentation
• Writing about traumatic life events -
  significant drops in physician visits and
  improved immunological function (e.g., Pennebaker
  Beall, 1986)
• Information Dissemination
• Greater knowledge about cancer - less
  depression, lower levels of anxiety about
  treatments, more positive self- image (e.g.
  Hockenbery-Eaton Minick, 1994 Jamison et al.,
  1986)
• Interpersonal Connection
• Teens with cancer want to establish contact with
  others youths with cancer to exchange info and
  advice about various cancers, procedures, and
  treatments (Bluebond-Langner et al., 1991 Enskar
  et al., 1997)

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Internet Elements

• Photographs
• Graphics
• Art
• Video clips

• Site Name
• Welcome Message
• Personal History / Diary
• Personal Interest Pages
• Page About Others
• Lists /Charts
• Guestbook
• Jokes/Quotes
• Poetry
• Essays
• News Articles
• Links
• Personal Contact Info

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Websites Used

• 21 home pages
• Independently created in first-person voice
• 11 female, 9 male, 1 gender unknown
• Age (mean 19.3, SD 2.4)
• Diagnoses Hodgkins Disease, Leukemia,
  non-Hodgkins Lymphoma, Ewings Sarcoma,
  Osteogenic Sarcoma, Pineal Germinoma,
  Rhabdomyosarcoma

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Self Presentation
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Welcome Message

• This is my page about Ewings Sarcoma. What is
  ewings sarcoma? Its a type of cancer that
  usually strikes children. I got ewings at the age
  of 18. I had a volleyball size tumor in my pelvis
  with mets to skull and lungs. I am now 20 and
  doing great.

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Diary / Personal History Pages

• I understood very strongly that in order to die,
  you must first melt away physically. I had seen
  it happen to many other children. Kids who ate
  did not die. Therefore I ate no matter how much
  my throat hurt or my gums bled. I would eat and
  throw it up, and then I would eat again, until I
  held something down.

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Art Poetry

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News Articles
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Information Dissemination
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Personal Interest Pages
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• The CT Scanner is like a big wide metal hula
  hoop. You lie on the table and it moves you
  through the hoop as it scans it. It isnt one of
  the claustrophobic tests, the only thing you have
  to do is lie very still.
• When a normal testicle is examined it is round,
  soft and smooth I know you probably dont want
  to talk about this or do the exam, but remember,
  having cancer sucks, the treatment really sucks.

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Charts/ Lists

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Tips for Coping with Hair Loss

• Get a really weird wig to wear on down days! If
  anybody says anything look upset and say But Im
  BALD underneath!
• Step on a Van der Graff generator for an
  interesting piece of scientific research! Will
  chemo hair shoot right off?
• Beat everyone in staring competitions with your
  scary eyebrowless gaze!

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Links
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Interpersonal Connection
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Guestbook
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• Recently I have lost my support group of friends
  who all understood what I was going through they
  have all died and it seems like they left me all
  alone at the worst point in my life. I was
  diagnosed with AML when I was 9, and in February
  we found out that it was back. Thank you for this
  site, it has been an encouragement to me ?.
• Ive never got a chance to talk with anybody
  under the age of 40 that has had cancer. So any
  teens that read this pleaseeeee e-mail i would
  luv to talk.
• Call me. I had Osteo over 4 years ago and was 22
  when I was diagnosed. I first had a cadavers
  bone put in but it broke two years ago and now
  have the same device you are going to have. I
  have a good deal of experience with it and may be
  able to help you out on what to expect. I can be
  reached at the below numbers.

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Conclusions

• Home pages may be a valuable resource for
  investigating patients perceptions of their
  illness.
• Youths with cancer are utilizing personal home
  pages for cancer-related self presentation,
  information dissemination, and interpersonal
  connection.

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