Shared Reading as a source of power when living with cancer: investigating experiences from an on-site and online reading group for cancer patients

:speech_balloon: Speaker: Tine Riis Andersen @tineriis

:classical_building: Affiliation: University of Stavanger and Trnava University

Title: Shared Reading as a source of power when living with cancer: investigating experiences from an on-site and online reading group for cancer patients

Abstract (long version below): I will present my findings from my doctoral project which is a qualitative study on cancer patients’ experiences of Shared Reading. The study is based on data collected from two Shared Reading groups in Norway for 16 weeks: online and on-site. The project aims to increase our knowledge of the potential of integrating Shared Reading groups as a low-cost, literature-based psychosocial support in cancer organizations.


IGELposter_TineRiisAndersen_vertical_newest.pdf (2.2 MB)


:newspaper: Long abstract

Shared Reading as a source of power when living with cancer: an investigation of cancer patients’ experiences from two 16-week reading groups

This poster will present an overview of my three-part doctoral project on Shared Reading experiences of people living with cancer.

I have set up two reading groups (one on-site and one online) for 16-weeks with 2 h. weekly sessions in collaboration with a cancer organization in Norway. The project recruited 12 adults with various type of cancer diagnoses. The organization of the groups followed The Reader’s Shared Reading practice (Billington et al., 2013; Davis, 2009; The Reader, 2019). The data collection took place over a year, from September 2021 to October 2022. The data sources included: In the first session I collected background information on the participants and their reading habits. During the sessions I did participant observation and audio recorded the sessions. After each session the participant did a 10-min. written response and filled out post-reading questionnaires (Kuiken et al., 2012; Schindler et al., 2018). In addition, the on-site group got a audio recorder home to record ongoing thoughts related to the texts and reading group, if they wanted to. In the end of the reading group I did focus groups with both groups, semi-structured interviews with the Reader Leaders, and individual interviews with five of the participants.

The findings from the study will be presented in three papers:

1)Regaining autonomy, competence, and relatedness: Experiences from two Shared Reading groups for people diagnosed with cancer (published)

The first paper (Andersen, 2022) is a qualitative evaluation study with a holistic view of how the participants experienced the reading group supported their life living with cancer. The study was mainly based on the data collected from focus group discussions with the participants, which was analyzed qualitatively through open coding and discussed through the framework of self-determination theory (Deci & Ryan, 2015). In total, four themes were identified to represent the essence of how the reading group benefited the participants: 1) Open space: The experience of a safe space due to the qualities and practice of Shared Reading and an “open space in self”; an expansion of the participant’s way of thinking by meeting multiple perspectives in the texts and the group discussion, 2) disconnecting through connecting: this theme is related to the cognitive effort needed in the activity. It was beneficial as cognitive training and helped the participants to disconnect from worries and rumination. 3) Community: it was essential for the participants to feel they contributed to a community, to feel useful and valuable for others in a time where they felt a reduced self-value at work and in life in general, and 4) resonances and echoes: this theme captures the experience when a text resonated strongly in a participant in the session and continued to have an impact after as an “echo”.
The findings from the study demonstrate that Shared Reading was experienced as a supportive environment that fulfilled basic psychological needs. The reading group elicited intrinsic motivation that brought about new initiatives and dimensions in the participants’ lives.

2)“The poem has stayed with me”: continued processing and impact from Shared Reading experiences of people living with cancer (under review)

The second paper is a multiple case study of meaningful reading experiences where we further explore the identified theme from paper 1: “resonances and echoes”. Encounters with literary texts can lead to deeply cherished memories, some of which readers may ascribe powerful and enduring functions to in terms of acquired life insights, behavioral changes, consolation, and wellbeing. The study charts how texts relate to readers’ experiences and how these text-experiences are related to how they are remembered and enacted. Qualitative and quantitative data from four readers were collected at different points in time and were interwoven and analyzed through the interpretive grounded theory method and a temporality framework. In a continuous meaning-making process that involves gut feeling, reflection, mental imagery and memories, the participants relate the reading experience to their current life situation. The results clarify how, in the long run, literature, and in particular Shared Reading, can affect personal growth and resilience. The paper aims to open researchers’ eyes to the importance of studying reading experiences as an ongoing process rather than a predetermined outcome.

3) Online Shared Reading (in progress)

This study will shed light on how the online setting impact Shared Reading and how it is experienced by the Reader Leader and the participants. Through a ‘macro-conversation analysis’ we will compare session transcripts by looking at tour-takings, interruptions, silences, and non-verbal responses. In the online group, there was a more structured dialogue with fewer interruptions and overlaps, fewer instances of group laughter, and shorter silences. In general, the Reader Leader took a more active role than the on-site group.
We will then triangulate the macro-conversation analysis with a qualitative analysis of experiences from the online Reader Leader and the participants to enlighten and elaborate the findings from the conversation analysis. This study has relevance for practitioners and researchers working in online settings where people discuss meaningful and emotional topics, such as bibliotherapy or reading groups.

Bibliography

Andersen, T. R. (2022). Regaining autonomy, competence, and relatedness: Experiences from two Shared Reading groups for people diagnosed with cancer. Frontiers in Psychology, 13, 1017166. https://doi.org/10.3389/fpsyg.2022.1017166

Billington, J., Davis, P., & Farrington, G. (2013). Reading as participatory art: An alternative mental health therapy. Journal of Arts & Communities, 5. Reading as participatory art: An alternative mental health therapy | Intellect

Davis, J. (2009). Enjoying and enduring: Groups reading aloud for wellbeing. The Lancet, 373(9665), 714–715. Redirecting

Deci, E. L., & Ryan, R. M. (2015). Self-Determination Theory. In International Encyclopedia of the Social & Behavioral Sciences (pp. 486–491). Elsevier. Redirecting

Kuiken, D., Campbell, P., & Sopčák, P. (2012). The Experiencing Questionnaire: Locating exceptional reading moments. Scientific Study of Literature, 2. The Experiencing Questionnaire: Locating exceptional reading moments | John Benjamins

Schindler, I., Hosoya, G., & Wagner, V. (2018). Development of the Aesthetic Emotions Scale (AESTHEMOS). Open Science Framework. OSF | Development of the Aesthetic Emotions Scale (AESTHEMOS)

The Reader. (2019). Stronger Foundations for the future: Growing Shared Reading with support from the second half fund.

I can’t wait to see the results from study 3!

1 Like

Interesting project, Tine. Well done.

Just a question out of curiosity: I know there are some Norwegian universities that are emphasizing the therapeutic effect of literature/narrative exposure. I am a bit curious about the reasons behind this trend in that part of the world.

Thanks, Franziska. I will keep you updated :slight_smile:

Dear Danial, thank you for your message. It is very good question, and you are right, there is definitely a trend. Not only in Norway but in whole Scandinavia. There is the narrative medicine network “Nordic Narratives in Narrative Medicine” and a nordic network around arts and health in general “Nordic Arts and Health Research network”. Why there is this trend I am not sure, but a guess would be the high focus on quality of life and public mental health in these countries.

Ahh! Totally forgot about the networks. There is also a Danish program called ‘Uses of Literature: The Social Dimensions of Literature’ which partially focuses on the same idea, I believe.

It is quite promising that researchers are now more convinced by the idea that narrative can be helpful, than previously when they may thought it was merely for entertainment. We may now call narrative ‘serious.’

Yes! That is true - at the University of Southern Denmark. So the question of “what literature can do” has got a prominent place. And yes, I agree, it is a very exiting development.