Chronic Illness and the Life Course: the case of Ulcerative Colitis
-
Upload
colette-barton -
Category
Documents
-
view
26 -
download
3
description
Transcript of Chronic Illness and the Life Course: the case of Ulcerative Colitis
![Page 1: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/1.jpg)
Chronic Illness and the Life Course: the case of
Ulcerative Colitis
Professor Mike Kelly
Health Development Agency and the London School of Hygiene
and Tropical Medicine
![Page 2: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/2.jpg)
Ulcerative Colitis
• Disease of the lining layer of the gut
• Chronic unpredictable diarrhoea
• Passage of blood and mucous
• Haemorrhage
• Development of cancer
![Page 3: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/3.jpg)
Treatment
• Sulphasalazine
• Steroids
• Surgery
![Page 4: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/4.jpg)
Epidemiology
• Young to early adulthood
• More common in females
• Prevalence 100 per 100,000
• Incidence 5-10 per 100,000
• Family connection 10% cases
![Page 5: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/5.jpg)
Subjects
• Had all had total colectomy and ileostomy for ulcerative colitis
![Page 6: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/6.jpg)
Sample
• Medical and surgical outpatient clinics
• Ileostomy association
• Volunteers
• Snowball sample
![Page 7: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/7.jpg)
Methods
• Fifty in-depth interviews
• tape recorded
• manual transcription
• identification of key themes
• intellectual craftsmanship
![Page 8: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/8.jpg)
The impact of serious illness
![Page 9: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/9.jpg)
Primary social attachments
• Family
• Friends
• Work
![Page 10: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/10.jpg)
The start of the trouble
• initial uncertainty
• “I must do something about this”
• symptom escalation
• an acute episode
• “you really are ill”
![Page 11: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/11.jpg)
Diagnosis
• X rays and barium enemas
• colonoscopy
• resistance
• acceptance
![Page 12: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/12.jpg)
Living with chronic disease
• variable symptoms
• pain and uncertainty
• loss of control
• diet
• relationships
![Page 13: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/13.jpg)
Fighting back
![Page 14: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/14.jpg)
Carrying on regardless
![Page 15: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/15.jpg)
Making sense of it all
• Trying to understand cause
• hope of recovery
• extreme ill health
• risks of cancer
![Page 16: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/16.jpg)
Consenting to surgery
![Page 17: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/17.jpg)
The immediate impact of surgery
• Pain• Fears• Dependency experiences• Relief• Grief
![Page 18: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/18.jpg)
Becoming an ileostomist
• Disgust
• Management issues
• Fears
• Complications
• learning the skills
![Page 19: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/19.jpg)
• Difficult micro hand skills
• Availability of help varies
• Incorporation of skills into lifestyle
• Can never be entirely forgotten about or ignored
![Page 20: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/20.jpg)
Being different
• Incontinence
• Carrying faeces around
• Incorporation of oddities into self conception
• Minimalizing
• Resolutely carrying on as normal
• Doubts and worries remain
![Page 21: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/21.jpg)
Information management
![Page 22: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/22.jpg)
• Imperatives versus irrelevance
• Control over information flow
• Inability to control information
![Page 23: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/23.jpg)
Relationships
• Irrelevance
• Paralysis
• Openness
• Anxiety
![Page 24: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/24.jpg)
• The right to be taken seriously as a sexual partner
![Page 25: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/25.jpg)
Complications and problems
• Medical and surgical
• Perineal wound
• Skin
• Blockages and dehydration
![Page 26: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/26.jpg)
Types of coping• Technical
• Intrasubjective
• Interpersonal
• Intersubjective
![Page 27: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/27.jpg)
Self
• A sense of who and what I am
![Page 28: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/28.jpg)
Identity
• What other people believe me to be
![Page 29: Chronic Illness and the Life Course: the case of Ulcerative Colitis](https://reader036.fdocuments.us/reader036/viewer/2022062720/5681358c550346895d9cf3d9/html5/thumbnails/29.jpg)
Conclusion
• Situated self
• Substantial self
• situated identity
• substantial identity