Laparoscopic Surgery for Endometrial Cancer: A Phenomenological Study of Patient Experience

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1 Laparoscopic Surgery for Endometrial Cancer: A Phenomenological Study of Patient Experience Cathy Hughes Patient Safety Lead for Cancer National Patient Safety Agency

2 Study Aim To describe women s perspectives of the experience of undergoing laparoscopic surgery for endometrial cancer.

3 Endometrial Cancer 7 th most common cancer in women worldwide cases per year More common in Western industrialised nations Highest incidence: North America and Western Europe Lowest incidence: Western Africa and Asia UK most common gynaecological cancer over 7000 cases in 2006 Cancer Research UK 2010

4 Aetiology Exact cause unknown Over 90% occur in women over the age of 50 Obesity accounts for about 40% of cases Associated with: Diabetes Hypertension Continuous or prolonged exposure to oestrogen without progesterone Incidence increasing with in obesity and life expectancy

5 Treatment Most women diagnosed as Stage 1 disease FIGO Surgical treatment Total Abdominal Hysterectomy and Bilateral Salpingo-ophorectomy, peritoneal washings +/- lymphadenectomy Midline versus transverse incision

6 Laparoscopic Surgery First laparoscopic hysterectomy performed in 1988 Reported use in endometrial cancer in 1993 Not widespread Surgeon dependent Older women and the obese

7 Approach Phenomenology Heideggerian hermeneutic Purposive sample of 14 women Unstructured face-to-face interviews Single initiation question Analysis using Colaizzi s framework Data managed using Microsoft Excel Colaizzi s (1978) seven steps of analysis Read all of the subjects descriptions. Extract statements that pertain to the phenomenon. Formulate meanings from these significant statements Organise formulated meanings into clusters of themes. Integrate the results so far into an exhaustive description Formulate the exhaustive description into a statement of the fundamental structure of the phenomenon. Validate the findings with the subjects.

8 Having Cancer Themes Fundamentally shaped the experience Primarily fear of cancer Having Cancer Transfer of Responsibility to the Surgeon Information and Support Independence Normality I couldn t even say that word cancer cancer it frightens the life out of me all I wanted to do was get rid of it, it was cancer, I thought oh my God I want it out, get rid of it (Ellie). so if it was cancer there was not much else I could do basically you know if you ve got a cancer you want it to be removed and so I had to have the surgery (Mandy).

9 Transfer of Responsibility to the Surgeon Surgeon seen as expert Key to cancer cure Despite low levels of contact Themes Having Cancer Transfer of Responsibility to the Surgeon Information and Support Independence Normality I had so much faith in him he would do the right thing he would do the best possible (Alice) It was his decision, he s the surgeon you know (Christine) I said I don t care as long as you get it out (Gail) he said there s always a chance that you may no be able to have keyhole oh God, I hope I do have keyhole (Jackie)

10 Information and Support Themes Having Cancer Transfer of Responsibility to the Surgeon Lack of knowledge about cancer Surgery and the process of being in hospital Information was sought from the surgeons and hospital teams you don t know much about cancer (Christine) Information and Support Independence Normality but nobody in my family s ever had a hysterectomy at all, nobody (Ellie) none of the nurses at first said you know, get, told me what to do (Frances) what s this? Tubes and oh my God, what s all this? (Ellie)

11 Themes Independence Dependence on others Maintained and regained Physically and psychologically Fear of dependence Having Cancer Transfer of Responsibility to the Surgeon Information and Support Independence Normality being on my own and not being able to cope because I have always sort of done me own thing all me life and I didn t want to have to I would rather they give me something (Lianne) I did feel as though I was on a conveyor belt (Frances) I mean we re just another, another, another person, aren t we to them, really (Ellie) because I didn t need seeing to I was sort of left to my own devises and happy to be so (Christine)

12 Themes Normality What was usual for the participant Disrupted and regained Began with symptoms Loss of control, Cosmesis, Bodily functions, Pain Who to tell Having Cancer Transfer of Responsibility to the Surgeon Information and Support Independence Normality I just couldn t even get up from my desk the bleeding was so heavy (Mandy) you don t know, you just, you, you don t know that you are ill do you? (Ellie) but you ve got nothing afterwards, nothing to, no stitching or no two little holes and like a line, that s all you have got you know I kept thinking have I dreamt it or what? (Nancy) I won t tell my husband (Imogen) I didn t tell my mother, I still haven t told my mother (Katie)

13 Phenomenological Description The fear an anxiety associated with having cancer shapes all aspects of the experience of having laparoscopic surgery for endometrial cancer. Trust is placed in the surgeon because of his/her knowledge and ability to perform a specialised procedure which can cure the cancer. Having cancer and having surgery removes the individual from the familiar and places them in a situation and environment that is unfamiliar and a transition is made to the world of the ill with loss of control, vulnerability and dependence on others. Flexibility, mobility and low levels of pain enable the individual to become independent rapidly after the operation and return to being well with few visible signs of being changed.

14 Implications for Practice Delivery of gynaecoloical cancer services The recognition of the cancer experience The skills and expertise of the surgeon The concepts of empowerment and choice The type of information and support offered Self-care, control and conformity Access to treatment

15 Conclusion Unique opportunity to study a new surgical technique Phenomenological description can be used to support the information Not generalisable A springboard for patient directed research