“Unless They Have Been Through It Themselves, They Have No Concept of How It Changes Everything”: A Phenomenological Investigation into The Long-term Consequences Cancer Survivors Experience Following Cancer and Its Treatment

This research focuses upon the exploration of cancer survivors’ lived experiences of long-term consequences following cancer and its treatment. The sample consists of members from the Macmillan ‘Cancer Voices’ online support group. This was carried out through two studies with the following overall aims being of focus throughout:

Aim 1: To identify any prevalent long-term consequences of cancer and its treatment that are experienced within a diverse sample of cancer survivors.

Aim 2: To investigate in depth, the lived experiences of a diverse sample of cancer survivors in regards to long-term consequences of cancer and its treatment.

Aim 3: To provide healthcare professionals who support cancer survivors with insights for practice.

The preliminary study consisted of an online survey using open-ended and closed questions and was completed by 84 participants. In addition to demographic and cancer history questions the participants completed the Quality of Life in Adult Cancer Survivors Scale and the Health Anxiety Inventory. Four open-ended questions enabled individuals to share anything they wished to, in regards to their experienced long-term consequences that had not already been addressed. Statistical analyses were conducted to identify relationships between selected variables. Template Analysis was used for the open-ended responses. Statistical analysis found in contrast to much previous literature that cancer type was not associated with quality of life. Template Analysis identified a rich variety of themes shedding light on the experience of long-term consequences. These analyses helped inform the selection of participants for the main study.

The main phenomenological study used e-mail interviews with 16 individuals. The data were analysed using Template Analysis, which identified six main themes within the participants’ responses; Changes in Selfhood, Support, Engagement in the Social World, Feeling Understood, Managing of Consequences, Research Impact and The Impact of Cancer Voices. A Narrative analysis was then performed upon the data of three participants, using the Listening Guide. This enabled the research to explore and identify how individuals narrated and structured their lived experiences.

The present research provides a number of key contributions to knowledge. First, it utilises a relatively new data collection method; e-mail interviewing and in doing so, identifies the advantages it holds. The richness of the responses and of the relationships built with the researcher demonstrates that this method can provide in-depth data. Pragmatically, it enables a wider range of participants to be included than would often be possible for face-to-face interviews. The participants also expressed they found their participation to have a therapeutic quality. Secondly, the research gave some detailed insights, providing alternative ways of looking at both the ‘changes in selfhood’ and the concept of ‘feeling understood’, that occur through the longterm consequences of cancer and its treatment. Finally, the use of the online e-interviewing method showed how issues such as incontinence, fatigue and eating/digestive issues might be more prominent in the everyday concerns of cancer survivors than the fear of cancer reoccurrence.