hoping for the best, preparing for the worst · hoping for the best, preparing for the worst the...
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Region Midtjylland Aarhus University Hospital
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
Region Midtjylland Aarhus University Hospital
Ovarian cancer
DK: ↑ incidence ↑ mortality (Grann et al 2011)
Region Midtjylland Aarhus University Hospital
Aetiology mostly unknown
Non-disease-specific symptoms
No verified diagnosis prior to surgery
Region Midtjylland Aarhus University Hospital
The clinical pathway:
Region Midtjylland Aarhus University Hospital
The clinical pathway:
Region Midtjylland Aarhus University Hospital
The clinical pathway:
Region Midtjylland Aarhus University Hospital
The clinical pathway:
Region Midtjylland Aarhus University Hospital
Aim
Explore the lived experiences of women
undergoing ovarian cancer surgery
Provide patient perspectives on being
newly diagnosed and starting treatment
Region Midtjylland Aarhus University Hospital
Body, person and participant (ICF: Functional Health. WHO 2001)
(Werdelin: Homo Metropolis)
Region Midtjylland Aarhus University Hospital
Body, person and participant (ICF: Functional Health. WHO 2001)
(Werdelin: Homo Metropolis)
Region Midtjylland Aarhus University Hospital
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 I A Cohabiting Student 0 Apartment
3 62 Ovarian cancer IV Married Retired 2 Apartment
4 79 Ovarian cancer I A 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 I C Married Employee 2 Bungalow
10 51 Ovarian cancer IV Married Employee 3 Bungalow
Region Midtjylland Aarhus University Hospital
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
Region Midtjylland Aarhus University Hospital
Hoping for the best, preparing for the worst
• Preparing as action
• Preparing in interaction
• Reflections and experiences
Region Midtjylland Aarhus University Hospital
Sub-theme
Patterns
Empirical findings
Preparing as action
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 ”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”
Creating disease-free zones
”Then I can pretend for a while, that I’m not ill”
Maintaining everyday life
”I try to keep up our every-day life” ”The day I was told that I had a really serious cancer disease, was an absolute landmark”
14
Region Midtjylland Aarhus University Hospital
Sub-theme
Patterns
Empirical findings
Preparing as action
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 ”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”
Creating disease-free zones
”Then I can pretend for a while, that I’m not ill”
Maintaining everyday life
”I try to keep up our every-day life” ”The day I was told that I had a really serious cancer disease, was an absolute landmark”
15
Region Midtjylland Aarhus University Hospital
Sub-theme
Patterns
Empirical findings
Preparing as action
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 ”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”
Creating disease-free zones
”Then I can pretend for a while, that I’m not ill”
Maintaining everyday life
”I try to keep up our every-day life” ”The day I was told that I had a really serious cancer disease, was an absolute landmark”
16
Region Midtjylland Aarhus University Hospital
Sub-theme
Patterns
Empirical findings
Preparing as action
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 ”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”
Creating disease-free zones
”Then I can pretend for a while, that I’m not ill”
Maintaining everyday life
”I try to keep up our every-day life” ”The day I was told that I had a really serious cancer disease, was an absolute landmark”
17
Region Midtjylland Aarhus University Hospital
Sub-theme
Patterns
Empirical findings
Preparing in interaction
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”
Interacting with health professionals
”It’s medical science in dialogue with me… because it’s my body” ”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”
18
Region Midtjylland Aarhus University Hospital
Sub-theme
Patterns
Empirical findings
Preparing in interaction
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”
Interacting with health professionals
”It’s medical science in dialogue with me… because it’s my body” ”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”
19
Region Midtjylland Aarhus University Hospital
Sub-theme
Patterns
Empirical findings
Preparing in interaction
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”
Interacting with health professionals
”It’s medical science in dialogue with me… because it’s my body” ”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”
20
Region Midtjylland Aarhus University Hospital
Sub-theme Patterns Empirical findings
Reflections and experiences
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”
Life during treatment
”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?” ”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”
21
Region Midtjylland Aarhus University Hospital
Sub-theme Patterns Empirical findings
Reflections and experiences
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”
Life during treatment
”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?” ”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”
22
Region Midtjylland Aarhus University Hospital
Sub-theme Patterns Empirical findings
Reflections and experiences
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”
Life during treatment
”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?” ”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”
23
Region Midtjylland Aarhus University Hospital
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
Region Midtjylland Aarhus University Hospital
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
Region Midtjylland Aarhus University Hospital
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