SOCIAL AND COMMUNITY PERSPECTIVES

The impact of chronic illness on everyday life

25th February 2003

Why do we need to study patient’s

experiences of chronic illness? • Any illness disrupts everyday life in some way• Feel both mentally and physically unwell • Look forward to recovering…….• Not the case for chronic illness • Western society chronic illness increasingly

common • “…..chronic illness can impact upon sufferers’

daily) and their sense of self (the view that others hold of them)” (Nettleton,1995,69)

Why do we need to study patient’s experiences of chronic illness?

• Biophysical impact – ‘normal’ functioning of mind and body central to our

sense of self and relationship with others– If unable to function ‘normally’ because of illness and/or

disability profound affect on relationships and our own identity

• Being dependent = problematic• Chronically ill person needs to be wary of making

too many demands – must do what is socially acceptable.

• Not only biophysical impact social impact on person’s and carer’s life

Why do we need to study patient’s experiences of chronic illness?

Important for health service provision

• Improved quality of life

• Few “magic bullet” cures

• Purchasers want to fund effective treatments

• Better understanding appropriate care

• To understand QoL need biopsychosocial approach.

Onset of chronic illness

• Can be striking

• More likely to be insidious

• ‘Normalise’ symptoms lay explanations

Onset of chronic illness

I felt like I’d had a bug or something, in fact I was beginning to think that I was a bit of a hypochondriac, because I was feeling very tired and not well, but couldn’t really put my finger on it. (Anna)

Getting a diagnosis

• Patients may use lay referral system to legitimate decision to go to doctor.

• May be prolonged period of uncertainty.

• Process of diagnosis may be very unpleasant.

Getting a diagnosis

The last barium enema I had, they were busy taking pictures. The nurse hadn’t blown up the balloon (the valve to keep the barium in situ) properly because it was hurting that much. I started to feel it coming out. The radiologist said it wouldn’t. And out it came, it went everywhere. Oh what an embarrassment

Reactions to diagnosisRelief: symptoms are legitimately a disease.

“You have multiple sclerosis”, the doctor at the hospital said. I couldn’t wait to get out of the out-patients’ department. Once in the car I turned to my husband and said gleefully “thank God, I now know what’s wrong with me, I’m so pleased.”...Now I knew I could tell people who asked what was wrong with me - I was not imagining things, or going mental - Yippee!

Reactions to diagnosis

Shock. e.g. cancer A doctor came to me in the recovery room and

just said, “You have a tumour.” I said to him, you know, “Is it canc....?” Well I didn’t say cancer, I asked him what it was. He said, “Yes, I’m afraid you’ve got cancer,” and he went away. And then a nurse came in, she was a staff nurse I think, and she said, “Oh they can do so many different things now-a-days for that sort of thing, go home and forget about it.” Could you forget it? You couldn’t forget it. She meant well. (Liz)

Reactions to diagnosis

• Can be very threatening if diagnosis has ambivalent status (e.g. ME/CFS) or is stigmatising (e,g HIV).

Two approaches to understanding illness

• Functionalist – Macro approach– illness adoption of appropriate role– ‘sick role’

• Interpretative approach – Micro approach– focuses on how person who is ill and those around

make sense of illness – explores how these interpretations impact upon action

Functionalist

• Parsons (1951) – Sick Role

• Illness socially and biologically altered state

• Sickness = form of deviation from norm

• Sick Role privileges and obligations

Sick role

Patient’s privileges/rights:– Allowed to be exempt from normal social

obligations – In need of care and unable to get well on own

Patient’s obligations:– Must want to get better asap– Must seek and co-operate with technically

competent medical help

Generally notion within society that should see to get better asap.

Problems with sick role

• Sick role = ‘ideal’ – temporary state, based on acute illness

• People do not automatically sick role• May not seek help for illness

• Continue to work

• Will vary according to different conditions. e.g. HIV, lung cancer

Freidson (1970)

built on Parsons concept • Extent to which rights and privileges of

sick role granted dependent upon the perceived seriousness of the disease and its legitimacy.

• Three types of legitmacy:• Condtional

• Unconditionally legitimate

• Illegitimate

Freidson

• Conditional– Those whose disease is treatable and will

recover

• Unconditionally legitimate– Untreatable – person cannot get well

• Illegitimate– Illness = stigmatised rights and privileges

unlikely to be granted

“Some people can’t understand why I’m in a wheelchair sometimes and not other times…..with some as long as I look cheerful and say I’m feeling fine they can cope with me bit if I say I don’t feel well they ignore me, or say I look well? I feel that some of them think I’m being lazy or giving up if I’m in a wheelchair and they are inclined to talk right over my head to my pusher”

Functionalist - summary

• Sick role = ideal response to illness, patient must want and try to get better

• Reality = much more complex• How people respond to symptoms/

seeking help depends upon social and cultural circumstances.

• Clearly does not apply to those with chronic conditions in same way

Interpretative

Need to understand experience of illness in everyday context

Impact of chronic illness • Chronic pain may be difficult to cope with• Some diseases uncertainty e.g. MS, RA• Information

• important for ‘control’ • role of self-help groups

• Patients may come to reject medical advice – may seek alternatives

• Patient ‘expert’

Biographical disruption

• Physical dysfunctions have social consequences e.g. incontinence - social and personal significance

• “Biographical disruption” = assault on person’s sense of identity. Loss of self - Charmaz (1983)

Biographical disruption

“Everything’s changed….. I was working full-time my husband and I do dance classes, obviously cleaning the house, taking the dogs out, I had quite an active life. And my job at work is quite a responsible one, and I like to keep quite active. I hate being on my own, I hate my own company…. It’s just turned from all go to all stop.” (Rachel)

Biographical disruption

• Loss of self - Charmaz (1983)

• Former self-image collapses but self-image that replaces it is not equally valued

Because not feeling like a full woman is horrible, it really was. It was, I think you feel so mutilated....I just prefer to be on my own [in a ward side room] and that’s since my mastectomy, you know, because I don’t know, it’s when I felt partly a woman I just didn’t like getting undressed. (Heather)

Biographical disruption

• Loss of role and loss/change of future grieve 

No, it’s the fact that people have got futures. People will come, I feel it worse when people come to the house, friends, family and say, we’re going to do so-and-so next year and it’s not until they’ve left, and I can see them leave that I think to myself, well they’ve got a future, they’re planning. And I can’t plan, but there you are. It’s not being able to look forward. (Liz)

Biographical disruption

• May feel burdening others isolation

If I feel bad sometimes Gina’ll [daughter] ring up and say, “How are you?” And I’ll say, “Oh I’m good, I’m just sitting on the sofa watching TV and that.”....But I won’t say, “I’m feeling really ill.” They just don’t want it day in and day out you know. (Katie)

Stigma

• Control of the body able to present selves in socially valued ways

• Loss of control stigma

• Some illnesses are very stigmatising e.g. schizophrenia, epilepsy, HIV

Goffman (1963) Stigma: Notes on the management of spoiled identity

Two groups of stigmatised people:• DISCREDITED

– Physically visible characteristic which sets them apart e.g. physical disability

• DISCREDITABLE– Something not able to see, but if found out

stigma e.g. mental illness/HIV

• Some conditions both e.g. epilepsy – usually ‘discreditable’ but if have seizure ‘discredited’

Stigma

• Stigma can be Felt or Enacted

• Felt – people feel others treating them in a different way – Or people would respond to them differently if

knew about diagnosis

....you don’t get treated the same, you get treated as though you’re a bit senile and you’re not the same person anymore. The cancer takes over the family, it’s the condition it’s not mum or Katie.

Stigma

• Enacted – actual avoidance– treated in different way because of diagnosis:

I felt dirty that was the worst thing. My sister proved that just after I got diagnosed, I’d gone to her house and I ‘d had a bath, and everything I touched she threw in the washing machine. She wasn’t doing it secretly, it was like, “Can I catch it?” Kind of thing. (Ann)

• Effects of being stigmatised equally devastating whether felt or enacted.

Patient as expert

• Chronic Illness may contact with a number of different health professionals and services – confusing / time consuming

• Contact vary between different conditions:– In early stages e.g. diabetes, may

decrease as time goes on.– Other diseases more help as time

progresses e.g. MS, Cancer

Patient as expert

“You meet so many different people and you have so many different names to remember, it just sends you mind blank. We’ve got enough bleeding people involved with doctors and things you don’t want social services on your back, because once they start they don’t stop. They’ll be camping out on the bleeding front lawn!” (Sarah)

Patient as expert• Person lives with chronic illness expert –

seek out information • Tuckett et al (1985) – ‘meeting between

experts’“We conceive of the consultation as a meeting between one person who has, by his training and experience, access to scarce and specialist knowledge and another person who has, by experience, immersion in cultural and past discussion a set of ideas about what is happening to him” (Tuckett et al,1985,217)

Effects on family and social relationships

• Chronic illness places huge strain on personal and sexual relationships:

I’d had to stay in the house all the time, I was virtually a prisoner. I couldn’t go out because everywhere I went I had to make sure there was a toilet. When I tried to explain to the boyfriend, he just couldn’t understand. We split up eventually. (Woman with ulcerative colitis).

Effects on family and social relationships

• May be particularly difficult for adolescents, young people

• Person distressed at failing in role A lot of the practical things I’m incapable of doing, my wife is taking over an increasingly practical role. For goodness sake she even checked the oil on her car the other day - something that’s been unknown before!....It seems very strange, I’m about used to it now, the fact that I can’t and therefore she has to, but it was a bit of a challenge to the old male virility! (Roger)

.....the washing up, and the cooking and the cleaning and that, I don’t do it so much anymore, and they’re having to do more, and I don’t like it, because it’s my role. I don’t like my husband coming in from work and stacking the dishwasher or unstacking the dishwasher. I’ve lost control if you like, it’s my job not his..... I hated cooking anyway, so that’s been quite easy to give that part up, although funny enough even that I’ve resented it because it was my job, it was my job to do it all. (Anna)

Effects on family and social relationships

• Impact on carer – change in relationship

“It’s more difficult for somebody who’s looking after you because it’s not happening to them and they’ve got to watch it happen to you, that’s what’s a bit more difficult.” (Ruth)

• Carers often isolated, suffering from poor health themselves

Summary

• Chronic Illness increasingly common

• Chronic Illness = huge impact on everyday life biographical disruption

• Need to understand patient’s experience

• Patient experts in own condition – care = partnership

• Need for co-ordination of multi-agency working – patient may get confused/annoyed with different people