1. Distortions of time: Young women’s experiences with cancer through online illness blogs  Jessica Keim Malpass, PhD, RN Levine Children’s Hospital Charlotte, NC

2. Acknowledgments  Financial support: GAANN fellowship 2009-2011  Acknowledgments of support

3. Presentation Overview  Introduction and brief literature overview  Distortions of time  Conclusions and implications

4. Introduction: Evolution of this study

5. Survivorship  Recurrence  Secondary malignancies  Late effects of treatment  Future fertility and pregnancy Employment & Education Marriage Health Insurance (prior to Affordable Care Act 2010)

6. Cancer and the internet  Social media, young adults with cancer-specific websites, and illness blogs  Uses of blogs; of all adults 8% have blogs, while 50% are regular readers of blogs  86-95% of all young adults (age 18-45) go online at least daily  95% of adults over 18 have or want to use internet sites that offer cancer education or support that is age appropriate (Treadgold & Kuperberg, 2010).  No known research specifically addressing internet use of young adults with cancer.

7. Specific Aims (1) Describe experiences as expressed by young women cancer survivors on the web.  a.Describe how young women with cancer’s online narratives reveal disruptions in life roles (in careers,education,relationships, parenting, fertility).  b.Explore the facilitators and barriers in accessing healthcare services described by the survivors both during and after treatment.

8. Methods  Procedure and data analysis  Inclusion/exclusion criteria  ~4 months/20 hours of collection/analysis a week  N=16, snowball sampling (sampling criteria)  Field notebook for observations  Text and pictures into Word document  Thick description  Nodes + categories  themes  Advisor and peer review  Online identity  Decision: contact if email present  Decision: what is data  Voice and meaning

9. Patient characteristics  Demographic table of participants Age at dx TypeLength blog (mo) Length blog (yr) 126Colorectal443.67 237Inflammatory breast433.58 325Hodgkins Lymphoma242.00 423Ewing's sarcoma242.00 526Ovarian514.25 628Breast262.17 720'sSarcoma201.67 839Inflammatory breast141.17*in memoriam 938Ovarian262.17 1035Melanoma80.67*in memoriam 1120'sHodgkins Lymphoma463.83 1233Colorectal322.67 13late 30'sColorectal282.33 1426Hodgkins Lymphoma201.67 1538Breast121.00 1630'sOvarian211.75

10. Living in the middle (diagnosis and induction)

11. New Normal (early treatment)

12. Urgency (later treatment)

13. Urgency

15. Transition into abyss (post treatment)

17. Discussion  Transitoriness  Distortion of time as central action that allowed participants to experience a wide range of emotions  Disagreement with Shaha et al.  Steeves & Kahn (1987) when suffering is present, likely to have “experiences of meaning”  Emotions considered positive Keim-Malpass, J., Baernholdt, M., Erickson, J.M., Ropka, M.E., Schroen, A.T., Steeves, R.H. Blogging through cancer: Young women’s persistent problems shared online. In press. E-published April 9, 2012 Cancer Nursing.

18. Conclusions  Advantages and limitations of this method  Control of online identity; no way of knowing offline identity  Importance of narrative  Nurses have a specific role in providing age-specific nursing interventions to support emotional transitions, physical and psychological manifestations.  Social support interventions that transcend traditional clinic experiences.

19. Future implications