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LIVING WITH A CHRONIC CONDITION: RHEUMATOID ARTHRITIS

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by

Natalie Abdou

on 25 September 2014

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Transcript of LIVING WITH A CHRONIC CONDITION: RHEUMATOID ARTHRITIS

THE INTERVIEW

Environmental Factors
driving is her primary method of transportation
Health Condition
Body Function & Structure
Muscloskeletal condition- affecting muscle and bones

Swelling and stiffness of the joints

Joint and muscle pain
Participation
Participation concentrates on the restrictions placed on her involvement in life situations
The International Classification for Functioning Model
Personal Factors
fairly knowledgeable about her condition
Family History
not aware of any family history, besides some cases of osteoarthritis

two sisters- one older, one younger

All children in family have autoimmune diseases

Younger sister diagnosed at 4 years old with type 1 diabetes

Older sister has had nasal polyps since early teens

Parents both have cholesterol, high blood pressure and are overweight
Activities
Walking
Running
Climbing stairs
Lifting weights or heavy items
Writing for prolonged periods
Squatting/ bending knees
Opening jars
Exercising
Participation
What is Rheumatoid Arthritis (RA)?
Autoimmune disease- immune systems attacks healthy tissue
Zara's History
diagnosed when she was 15 years old- 11 years
LIVING WITH A CHRONIC CONDITION: RHEUMATOID ARTHRITIS


"Zara's" Personal Experience

AIMS
To gain a deeper understanding of what it is like to live with a chronic condition, by listening to the views of someone who is actually experiencing it.
To identify the relevant thematic issues raised during the interview that can be related to our theoretical learning material
To gain experience as a future health professional in the interview and evaluation process
This model looks at the whole person, taking into account all aspects that can affect their functioning.
Aims to achieve a better understand of how Zara functions in society
To demonstrate the presence of co-morbidity
Accessed on 20 September 2014 from
http://www.making-prsp-inclusive.org/en/6-disability/61-what-is-disability/613-the-who-definition.html
In RA, the immune system attacks the lining of the joints causing inflammation and pain
mostly affects the hands and feet- also knees, hips
No known causes- common in smokers and people with RA in family history
when explaining her condition Zara says
"It's an autoimmune...um.. disease? I suppose.."
demonstrating a questionable acceptance of the condition as a disease or illness
experienced severe pain in hands for a few weeks before local GP referred her to a specialist who ran tests to confirm diagnosis
occasionally leaves work/uni early or unable to go at all when in pain
does not attempt grocery shopping alone
unable to go to the gym with friends/sisters
at times unable to socialise with friends
does not to want to have kids or get married because of her condition
Zara's Background
26 year old, Female
Full time 3rd year student
Bachelor in Primary Education
works 3 jobs part time
3-4 days a week
office admin
after school care program
babysitting
Enjoys socialising with friends
Spending time with family
Travelling
Loves kids- that's why she chose teaching
taking medication since diagnosis
"everyday I would wake up and like I couldn't actually move my hands... they wouldn't close up into a fist... I couldn't brush my teeth, have a shower... I couldn't even go to the toilet properly"
Activities refer to the limitations RA places on Zara's ability to execute everyday tasks
Contextual Factors
Psychological issues identified
Social Issues Identified
Interviewer experience
Positives and Negatives Experienced
Positives
challenging- never done it before
great practice for my future career
developed deeper understanding of how hard it can be to live with a chronic condition- research and stats can only demonstrate so much
able to feel real empathy towards people living with RA after hearing a genuine personal account and being able to ask a range of questions
Zara is young, so I was able to relate to her and put myself in her position while she was talking
I've altered my misconception about Rheumatoid Arthritis only affecting seniors
I became relaxed and more engaged after the first section of questions, which allowed me to forget about the interview and just ask questions as you would in a casual conversation setting
It's fascinating to find themes and issues that we learn the theory behind, unfolding in practice, in a person's life experiences
Negatives
I was very nervous
I made quite a few mistakes when I was asking the questions
It was hard to keep serious at the beginning as I was interviewing some I know, and knew I was being recorded
I realised after the interview that I had missed a few questions
As I was writing up my report I came up with a few more questions I wished I could have asked Zara in the interview
I didn't take any notes- this would have helped me to map out all my collected info and see what I still needed
I kept the script quite similar to the template- I wish I could have developed more of my own
Zara was stuck for time so the interview felt a little rushed

Recommendations
read over the questions to be asked prior to the interview, making sure it is written according to my natural speaking style
Conclusion
This interview was very effective in facilitating a broader and in-depth understanding of the lived experience of a person with a chronic condition.
Zara gave an example of her body functioning saying, "Sometimes, my hands swell up so much that I can't use them".
The level of joint and muscle pain Zara experiences from her RA is often severe and in different areas. This is obvious when she explains her symptoms saying, "I'm starting to get it in my knees, and I can't really walk that well. It's really painful"
Climate conditions- mild melbourne weather, no snow/ice
when asked if climate affects her condition, Zara explained, "Depending on the weather... if it's really cold, my hands tend to freeze up and swell and I can't actually move them at all"
access to healthcare and discounted medications
Lives with her family- support network, low financial burden
Her home is in central melbourne- close proximity to medical needs, work, social gatherings and friends
weight fluctuations- lack of exercise/ fitness, not a priority
coping strategies Zara uses:
applying heat
using gadgets such as her "new mouse" and "ergonomic chair" at work
good social support
regular specialist visits
on medication
positive attitude "I just get on with it"
young- highly active and social age group
student- interested in learning, able to access and understand information, self-managing, highly motivated
Single and living at home- less responsibilities, more time to concentrate on health
Close ties with her family
regularly sees a specialist- was referred to a counselling group but was not interested
lives with her parents and two sisters
Ask more questions!
Take notes- to evaluate the information during the interview and see what could be missing
Have a casual conversation before starting the questions and recording
Maladaptive upbringing and chronic stress

grew up with a highly emotional and anxious mother
became an anxious adult who is too stressed and worried to make any changes in their life that might make things worse.
Constantly worried about the future, rather than taking steps to prevent negative outcomes


Perceived external locus of control

not regular with check-ups
not consistent with medication
lacking motivation to try to exercise
does not want to research condition because she does not want to "find out what's going to happen in future"- rather than making changes to improve future
when referring to her sisters Zara said, "we all have issue with our immune systems


Pessimistic explanatory style

believes she will never have kids and get married because she will not be able to physically function by then
learned helplessness

doesn't take medication correctly, because she says she is still in pain regardless
will not lift weights or use gym equipment because she has before and she was unable to lift
Low self-efficacy

had the condition for 11 yrs
no considerable change to improve quality of life
ie: exercise, regular meds, seeking alternate treatment, group counselling
High level of perceived social support

emotional, tangible, informational, appraisal and social companionship support- from family members she lives with, she mentioned her mum and sisters are always there to listen, give advice, cry with her, support her financially when needed, show her love

Friends readily available for chats, spending time, giving their opinions and supporting her achievements
As the interviewer, I was able to compare the experiences to theory and develop an empathetic understanding on how no two people living with chronic conditions are ever the same, and so we must never fall into restrictions and expectations of our clients in the rehabilitation process.
I enjoyed the experience I have gained, and feel more confident in performing interviews in future
Full transcript