Meet the Blogger! Marie Ennis-O’Connor talks about blogging and breast cancer survivorship

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After two very interesting interviews with Kishan Karripannon and Tamara Bugembe, we continue our series of Meet the Blogger*  with a guest blog post of blogger Marie Ennis-O’Connor.

Marie Ennis-O’Connor is a board member of Europa Donna Ireland –  The Irish Breast Cancer Campaign (www.europadonnaireland.ie) an advocacy group that is one of 46 EUROPA DONNA member countries across Europe. In November 2012, she co-founded#BCCEU, Europe’s first breast cancer social media chat on Twitter. Marie is a regular contributor toHealth Works Collective,  (http://healthworkscollective.com) an online community for thought leaders in international healthcare and has been an invited speaker at international health conferences.  She writes about the experience of transitioning from breast cancer patient to survivor on her award-winning blog Journeying Beyond Breast Cancer (http://journeyingbeyondbreastcancer.com)
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Beyond statistics: how blog narratives provide a new framework for a richer understanding of the lived experience of breast cancer survivorship.

“The challenge in overcoming cancer is not only to find therapies that will prevent or arrest the disease quickly, but also to map the middle ground of survivorship and minimize its medical and social hazards” 1

Improvements in the early detection and treatment of cancer have increased the periods of survival following a breast cancer diagnosis. However, statistics give no indication of the quality of life experienced in the months and years that follow the end of treatment. Amongst emerging research on the physical and psychosocial aspects of cancer survivorship, some questions still need to be answered. For instance, how does a person transition to survivorship and integrate the cancer experience into their lives over the long term? And what support structures are needed to facilitate this process of integration? A new framework for the study of cancer survivorship, one that assesses the effects of cancer and cancer therapies at key life stages throughout the remainder of a person’s life, is clearly needed.

It is a common misconception that when a patient walks out of hospital on that last day of treatment their cancer story has ended; in reality another chapter is just beginning. During treatment patients are so caught up in the day-to-day routines of survival that there may be little time to give much thought to anything beyond these routines. It is only when treatment has finished that the full impact of what they have been through hits them. Many cancer survivors are surprised at the intensity of their feelings of vulnerability, sadness and depression. As survivors struggle to come to terms with the physical and emotional aftershocks of cancer, it is not unusual to experience feelings of relief and elation at being given a second chance intermixed with feelings of anxiety, fear and uncertainty about their future. The reality is that for many the end of treatment can be every bit as terrifying as the day of diagnosis. After cancer a person may feel cut adrift without the regular support and reassurance of a medical team and become overwhelmed with thoughts of “what next”. As a result an increasing number of survivors are using online media to engage in health-related social networking as they transition from cancer patient to cancer survivor. Personal journals in the form of cancer blogs are growing in popularity not only as a channel for personal thoughts and feelings, but also as a forum for on-going discussion among survivors. Thus these blog narratives provide a framework for a richer understanding of the lived experience of cancer survivorship, and how it evolves over time and at key life stages.

My own experience as a breast cancer survivor who found a valuable sense of connection and self-constructthrough writing a blog2 led to my interest in researching the blogging motivations of other cancer survivors. Through analysing the overarching themes in the blog narratives of a group of younger women, the aim of my study was to explore the lived experience of cancer survival from the perspective of those with direct experience of the situation.3 A thematic analysis revealed that while the blog narratives conveyed common themes related to physical, psychosocial and emotional issues, the uniqueness of each blog demonstrated that the survival trajectory is a dynamic concept, the challenges of which can vary at different life stages and times. For instance, (as noted by Zebrack) the experience and meaning of disruptions in intimacy will be different for a young, unmarried survivor trying to figure out if and when to disclose the effects of cancer treatment to a potential partner than it will be for an older adult in an established relationship. 4

My investigation extends previous findings that the lived experience of cancer survival is a complex personal, social, and meaning-making phenomenon which persists beyond the patient and treatment experience. 5 A cancer diagnosis is not just a single event with a defined beginning and end, but rather a diagnosis initiates a survival trajectory characterized by on-going uncertainty, potentially delayed or late effects of the disease or treatment, and concurrent psychosocial issues that extends over the remainder of a person’s life. 6

If healthcare providers are to adequately prepare patients for cancer survivorship and assist them in their recovery, then they must achieve a deeper understanding of what surviving cancer is like. Understanding how patients who are transitioning to long-term survivorship manage the impact of cancer on their lives is critical. As suggested by Pascal (2010), cancer survival requires its own analytic frameworks. 7 The personal perspective shared in blogs offers an opportunity for a richer understanding of the lived experience of cancer survivorship and how it evolves over time. My research confirms earlier research by Hillan (2003) that “these on-going forums are rich, anecdotal sources of individual experiences with disease progression, reaction to alternative and standard treatments, and opinions on healthcare and its effect on family members and lifestyle.” 8

While acknowledging limitations in respect of sample size and selection bias, my study provides the framework for a richer understanding of the lived experience of cancer survivorship. It also suggests scope for further research on the value of blogs to enhance patient-provider communication and as a psychotherapeutic intervention for patients.

References
1. Mullan F. 1985. Seasons of survival: Reflections of a physician with cancer. New England Journal of Medicine. 313(4):270–273.

2. http://journeyingbeyondbreastcancer.com

3. Ennis, M. 2012. Beyond statistics: how analysing blog narratives enhances nursing’s understanding of the survivorship experience of younger women with breast cancer. P083. Proceedings of the European School of Oncology, Breast Cancer in Young Women Conference. Dublin, Ireland, 8 -12 November, 2012.

4. Zebrack BJ. 2000. Cancer survivor identity and quality of life. Cancer Pract. 8(5):238-42.

5. Pascal J. 2010. Phenomenologyas a researchmethodfor socialworkcontexts: A case studyof cancersurvival. Currents: Newscholarshipinhumanservices.9 (2) 1-23.

6, Zebrack BJ. 2000. Cancer survivor identity and quality of life. Cancer Pract. 8(5):238-42.

7. Pascal J. 2010. Phenomenologyas a researchmethodfor socialworkcontexts: A case studyof cancersurvival. Currents: Newscholarshipinhumanservices.9 (2) 1-23.

8. Hillan, J. 2003. Physician use of patient-centred weblogs and online journals. Clin Med Res. 333–335.

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* Meet the Blogger” is a section where invited Public Health bloggers will be contributing posts about their own research and/ or their experience on using social media in their work. If you would like to contribute, please contact us.

View the latest posts on the International Journal of Public Health homepage

20 Comments

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Jackie Fox

As a regular reader of Journeying Beyond Breast Cancer, I know what a compassionate and supportive presence Marie is. It comes as no surprise that she represents the community so well in a more academic forum. Well done!

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Cara Bennett

Blogs bring about a sense of community and Marie is a great community builder. She has personal experience of this and married to her academic background she is the perfect person to present research on this fascinating topic

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Professor Billy O'Connor

Excellent article with just one proviso to add – make sure you check any medical information you get on blogs and other online fora, and print out what you read to show your healthcare provider before making any decisions on further treatment.

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Susan Zager

This is a very well written look at blogging and it’s relation to cancer survival. Marie explains why it is so important that the medical community understand the patient’s perspective when it comes to cancer. The changes that patients go through as a result of treatment are enormous and there are some excellent blogs especially Marie’s “Journeying Beyond Breast Cancer”, because she manages to engage the community in a very special way that provides a forum for survivors to discuss the complex effects of treatment and beyond.

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Audrey Birt

The blog has so many layers of benefit for the individual, for the community of interest and as an education tool for those wishing to deepen their empathic understanding. For me the cathartic release, the deepening of my own understanding of the impact of my cancer experience, the reflection over time of how I have moved and changed, the diary of a life changing experience is more than enough reason to blog. But the connection to others, the sense of community and support from a community is such a powerful and for me unexpected addition. I know as a nurse developing my skills and experience, tapping into the bloggers sphere would have been so valuable. Marie’s own blog is a rich resource of experience and a wonderfully wise journey to travel alongside.

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Terri

Wonderfully written and poignantly true. So many survivors struggle with the chapter of life, post-treatment. Thank you Marie for writing this piece and for continuing to create community on JBBC.

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Debbie Woodbury

Once again Marie has her finger on the pulse of the survivor community. We have diverse personal experiences, but we all benefit greatly from the connections promoted by survivor blogs. It’s especially interesting to consider how the medical community can deepen its understanding of the survivor experience and enhance patient-provider communication through these blogs. I agree with Marie that more research should be done in this area.

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Elaine Sieff

As a cancer patient, and now post treatment I find that individual patient experiences provide a sense of community – common ground that we’re not alone, we’re not odd – and yet individual.

When you’re in treatment, you’re happy to get through it. After treatment, you’re looking at the rest of your life and wondering what next? Blogging is a useful way to find out what others are experiencing, to blow off steam, a creative outlet.

You may not find a lot of people like yourself in a local environment, not everyone wants to hear about each little bit of cancer experience but within social media and in the world of blogging, there is a compassionate, supportive community. And Marie’s work helps to inform about this, but more than that, I think her blog, and now this research helps to encourage participation and connection.

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Facing Cancer Together

This study sounds fascinating. I would be interested in reading the detailed findings – is the work published?

Marie, you’ve done wonderfully in setting up community for the limbo that is after treatment. It has been an inspiration to follow along, and to connect with your contributors. Thank you!

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Colleen Young (@colleen_young)

Indeed more research into blogging by people managing chronic illness and cancer survivors is warranted. You will be interested to read the research of Pam Ressler who studies the blogs of patients with chronic pain. See her most recent publication “Communicating the Experience of Chronic Pain and Illness Through Blogging” published here on the Journal of Medical Internet Research http://www.jmir.org/2012/5/e143/

Ressler et all found that:
– 89.7% of the respondents have shared their blogs with friends and family members, less than half (42.1%) have shared their blogs with their health care providers

– Most bloggers (60%) had initiated their blogs on their own, and the majority (87.8%) of the blogs were public and searchable on the Internet.

– 6% of respondents stated their health care providers had suggested they initiate a blog.

The stat that interests me the most in Pam’s research is that less than half the bloggers shared their blog with their health care provider. As a community manager of online patient communities, I see the potential of the collective knowledge and narrative exchange of patient/survivors and how it could be translated back to health care providers to inform their communication and education practices. Fertile ground for research.

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Pamela Ressler @pamressler

Great abstract, Marie. This is an area of research that is very exciting — allowing us to recognize and in some way quantify the benefits of connection for those with chronic, isolating illnesses through new social technology.

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Gabby Mitchell

What a fascinating study – thanks for sharing the information and interesting to read everyone’s comments too

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