distortions of time: young women’s experiences with cancer through online illness blogs jessica...

Distortions of time: Young women’s experiences with cancer through

online illness blogs

Jessica Keim Malpass, PhD, RNLevine Children’s Hospital

Charlotte, NC

Acknowledgments

Financial support: GAANN fellowship 2009-2011

Acknowledgments of support

Presentation Overview

Introduction and brief literature overview

Distortions of time

Conclusions and implications

Introduction: Evolution of this study

Survivorship Recurrence Secondary malignancies Late effects of treatment Future fertility and

pregnancy

Employment & EducationMarriageHealth Insurance (prior to Affordable Care Act 2010)

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.

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.

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

Patient characteristics

Demographic table of participants

Age at dx

Type Length blog (mo)

Length blog (yr)

1 26 Colorectal 44 3.67  

2 37 Inflammatory breast 43 3.58  

3 25 Hodgkins Lymphoma 24 2.00  

4 23 Ewing's sarcoma 24 2.00  

5 26 Ovarian 51 4.25  

6 28 Breast 26 2.17  

7 20's Sarcoma 20 1.67  

8 39 Inflammatory breast 14 1.17 *in memoriam

9 38 Ovarian 26 2.17  

10 35 Melanoma 8 0.67 *in memoriam

11 20's Hodgkins Lymphoma 46 3.83  

12 33 Colorectal 32 2.67  

13 late 30's Colorectal 28 2.33  

14 26 Hodgkins Lymphoma 20 1.67  

15 38 Breast 12 1.00  

16 30's Ovarian 21 1.75  

Living in the middle (diagnosis and induction)

New Normal (early treatment)

Urgency (later treatment)

Urgency

Transition into abyss (post treatment)

Transition into abyss (post treatment)

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.

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.

Future implications