Hoping for the best, preparing for the worst The lived experiences of women undergoing ovarian cancer surgery

Lene Seibæk RN, MHH, PhD Department of Obstetrics and Gynaecology Aarhus University Hospital Denmark Aarhus University Hospital

Region Midtjylland

Ovarian cancer DK: ↑ incidence ↑ mortality (Grann et al 2011)

Aarhus University Hospital

Region Midtjylland

Aetiology mostly unknown Non-disease-specific symptoms No verified diagnosis prior to surgery

Aarhus University Hospital

Region Midtjylland

The clinical pathway:

Aarhus University Hospital

Region Midtjylland

The clinical pathway:

Aarhus University Hospital

Region Midtjylland

The clinical pathway:

Aarhus University Hospital

Region Midtjylland

The clinical pathway:

Aarhus University Hospital

Region Midtjylland

Aim

Explore the lived experiences of women undergoing ovarian cancer surgery Provide patient perspectives on being newly diagnosed and starting treatment

Aarhus University Hospital

Region Midtjylland

Body, person and participant (ICF: Functional Health. WHO 2001)

(Werdelin: Homo Metropolis) Aarhus University Hospital

Region Midtjylland

Body, person and participant (ICF: Functional Health. WHO 2001)

(Werdelin: Homo Metropolis) Aarhus University Hospital

Region Midtjylland

Interview participants #

Age

Diagnosis

Stage

Cohabitation

Socio-economic group

Children

Housing

1

51

Ovarian cancer

IIIC

Single

Employee

0

Town house

2

29

Ovarian cancer

IA

Cohabiting

Student

0

Apartment

3

62

Ovarian cancer

IV

Married

Retired

2

Apartment

4

79

Ovarian cancer

IA

Widowed

Retired

1

Apartment

5

57

Borderline

-

Single

Retired

1

Other (cottage)

6

66

Ovarian cancer

III C

Married

Retired

2

Bungalow

7

61

Ovarian cancer

III C

Married

Civil servant

3

Official residence

8

72

Ovarian cancer

III C

Widowed

Retired

2

Apartment

9

60

Ovarian cancer

IC

Married

Employee

2

Bungalow

10

51

Ovarian cancer

IV

Married

Employee

3

Bungalow

Aarhus University Hospital

Region Midtjylland

Study period: The day before surgery → Eight weeks later Interviews: First at the ward Second in private homes Semi structured guide Phenomenological-hermeneutic text analysis

Aarhus University Hospital

Region Midtjylland

Hoping for the best, preparing for the worst

• Preparing as action • Preparing in interaction • Reflections and experiences

Aarhus University Hospital

Region Midtjylland

Sub-theme

Patterns

Empirical findings

Preparing practically

” I had a week to cook for the freezer and wash my curtains” ”I’ve been lying in my bed all the time. I couldn’t pull myself together”

Preparing physically

Preparing as action

Creating disease-free zones

”I smoke too many cigarettes and I also needed an extra glass of red wine to sleep at night” ”I eat healthy food and replace the tea with buttermilk”

”Then I can pretend for a while, that I’m not ill”

”I try to keep up our every-day life”

Maintaining everyday life ”The day I was told that I had a really serious cancer disease, was an absolute landmark” 14Aarhus University Hospital

Region Midtjylland

Sub-theme

Patterns

Empirical findings

Preparing practically

” I had a week to cook for the freezer and wash my curtains” ”I’ve been lying in my bed all the time. I couldn’t pull myself together”

Preparing physically

Preparing as action

Creating disease-free zones

”I smoke too many cigarettes and I also needed an extra glass of red wine to sleep at night” ”I eat healthy food and replace the tea with buttermilk”

”Then I can pretend for a while, that I’m not ill”

”I try to keep up our every-day life”

Maintaining everyday life ”The day I was told that I had a really serious cancer disease, was an absolute landmark” 15Aarhus University Hospital

Region Midtjylland

Sub-theme

Patterns

Empirical findings

Preparing practically

” I had a week to cook for the freezer and wash my curtains” ”I’ve been lying in my bed all the time. I couldn’t pull myself together”

Preparing physically

Preparing as action

Creating disease-free zones

”I smoke too many cigarettes and I also needed an extra glass of red wine to sleep at night” ”I eat healthy food and replace the tea with buttermilk”

”Then I can pretend for a while, that I’m not ill”

”I try to keep up our every-day life”

Maintaining everyday life ”The day I was told that I had a really serious cancer disease, was an absolute landmark” 16Aarhus University Hospital

Region Midtjylland

Sub-theme

Patterns

Empirical findings

Preparing practically

” I had a week to cook for the freezer and wash my curtains” ”I’ve been lying in my bed all the time. I couldn’t pull myself together”

Preparing physically

Preparing as action

Creating disease-free zones

”I smoke too many cigarettes and I also needed an extra glass of red wine to sleep at night” ”I eat healthy food and replace the tea with buttermilk”

”Then I can pretend for a while, that I’m not ill”

”I try to keep up our every-day life”

Maintaining everyday life ”The day I was told that I had a really serious cancer disease, was an absolute landmark” 17Aarhus University Hospital

Region Midtjylland

Sub-theme

Patterns

Empirical findings

Passing on the news

”It’s a way of getting ready… that you keep repeating that it is going to happen” ”We kindly asked them not to distribute news of my cancer through Facebook”

Preparing in interaction

18Aarhus University Hospital

”It’s medical science in dialogue with me… because it’s my body”

Interacting with health professionals

”I was quite grey and skinny when I arrived… but within 24 hours I’d recovered”

Family relations

”I’ve got a man who’s drinking; I can’t count on him”

Region Midtjylland

Sub-theme

Patterns

Empirical findings

Passing on the news

”It’s a way of getting ready… that you keep repeating that it is going to happen” ”We kindly asked them not to distribute news of my cancer through Facebook”

Preparing in interaction

”It’s medical science in dialogue with me… because it’s my body”

Interacting with health professionals

Family relations

19Aarhus University Hospital

”I was quite grey and skinny when I arrived… but within 24 hours I’d recovered”

”I’ve got a man who’s drinking; I can’t count on him”

Region Midtjylland

Sub-theme

Patterns

Empirical findings

Passing on the news

”It’s a way of getting ready… that you keep repeating that it is going to happen” ”We kindly asked them not to distribute news of my cancer through Facebook”

Preparing in interaction

20Aarhus University Hospital

”It’s medical science in dialogue with me… because it’s my body”

Interacting with health professionals

”I was quite grey and skinny when I arrived… but within 24 hours I’d recovered”

Family relations

”I’ve got a man who’s drinking; I can’t count on him”

Region Midtjylland

Sub-theme

Reflections and experiences

Patterns

Empirical findings

Self-images

”I feel that I’m a relatively strong person… but I can also be weak, right? I mean: you’re as compex as a piece of patchwork”

Life and death

”When you get such a disease, then suddenly there’s an ice-frosted door on your time-line; suddenly you can’t see that far”

”If you’re not allowed to believe in the positive signals from your own body…that’s really not good. That’s where hope should be – and optimism to, right?”

Life during treatment

21Aarhus University Hospital

”The chemotherapy goes surpricingly well – with the trifles following. After a week I feel quite tip-top, and then I’ve got fourteen really nice days”

Region Midtjylland

Sub-theme

Reflections and experiences

Patterns

Empirical findings

Self-images

”I feel that I’m a relatively strong person… but I can also be weak, right? I mean: you’re as compex as a piece of patchwork”

Life and death

”When you get such a disease, then suddenly there’s an ice-frosted door on your time-line; suddenly you can’t see that far”

”If you’re not allowed to believe in the positive signals from your own body…that’s really not good. That’s where hope should be – and optimism to, right?”

Life during treatment

22Aarhus University Hospital

”The chemotherapy goes surpricingly well – with the trifles following. After a week I feel quite tip-top, and then I’ve got fourteen really nice days”

Region Midtjylland

Sub-theme

Reflections and experiences

Patterns

Empirical findings

Self-images

”I feel that I’m a relatively strong person… but I can also be weak, right? I mean: you’re as compex as a piece of patchwork”

Life and death

”When you get such a disease, then suddenly there’s an ice-frosted door on your time-line; suddenly you can’t see that far”

”If you’re not allowed to believe in the positive signals from your own body…that’s really not good. That’s where hope should be – and optimism to, right?”

Life during treatment

23Aarhus University Hospital

”The chemotherapy goes surpricingly well – with the trifles following. After a week I feel quite tiptop, and then I’ve got fourteen really nice days” Region Midtjylland

Conclusions

Diagnostics and start of treatment were extensive life events There was a high level of trust in healthcare Coping via creating disease-free zones and maintaining everyday-life The women had increasing demands for detailed information The family represented a resource and a strain

Hope was induced and strengthened by physical well-being Aarhus University Hospital

Region Midtjylland

Acknowledgments

Financing The Danish Cancer Society, the Psychosocial Research Committee The Danish Nurses’ Organization The Faculty of Health Sciences, University of Southern Denmark The Research Foundation of Health Science in Central Denmark Region The Research Foundation of Aarhus University Hospital The Hede Nielsen Foundation The Department of Gynecology and Obstetrics, Aarhus University Hospital

Aarhus University Hospital

Region Midtjylland

Seibaek L, Kjeld Petersen L, Blaakaer J, Hounsgaard L: Hoping the best - preparing for the worst. Eur J Cancer Care (2012) 21(3):360-71

Aarhus University Hospital

Region Midtjylland