Chronic Pain and Stigma

The charities who are members of Pain Alliance Europe (PAE) are inviting people with chronic pain or their carers to fill in this short survey on the effect of their chronic pain and stigma.
 
This is the third survey that PAE has created on the theme of chronic pain, in a series of annual surveys on the impact of pain. With each survey, we are analysing a different aspect of the impact of pain on the quality of life of the chronic pain patients in Europe.

A report will be created at the end of this survey, comparing the pain patients’ experiences in different countries. This report will be publicised by Pain Alliance Europe in order to reinforce our actions and to promote our works to make politicians and policy makers more aware of the important issue of chronic pain. On the website of PAE you can see reports of the previous two surveys. (At the end of this survey, you can copy and paste a URL to take you to the report page.)

The first part includes questions about your pain and stigma. 
The second part contains questions about you and the physical pain you have.

Part One: Your Pain and Stigma

Question Title

* 1. Have you ever felt any stigmatizing reaction or behaviour (e.g., weird facial expression, verbal criticisms, devaluation of your social status or your pain experience, rejection, perceived unfairness or discounting, etc.) due to your chronic pain condition by one of the following:

  Always Sometimes Rarely Never Not relevant
Primary care physicians, GP or family doctor seeing you for your pain condition
Hospital physicians seeing you for your pain condition
Other physicians seeing you for other medical problems
Nurses (including community/regional nurse)
Any other allied or paramedic health professionals (e.g. PT therapist, podiatrist, etc.)
Partner (wife, husband, romantic partner)
Close relatives (brothers, sisters, uncles, etc.)
Broader family (cousins, nephews, etc.)
Friends
Caregivers at home
Neighbours
Colleagues at work
Bosses or job managers
Peers in sporting and leisure activities
Service providers in restaurant, café and holiday situations
In public (shopping malls, banks, restaurants, trains, bus stations, etc.)

Question Title

* 2. Below you will find a list of statements. Please rate whether you agree or disagree with each statement:

  Strongly disagree Disagree Agree Strongly agree No comment
I think that people without chronic pain cannot understand my situation
Sometimes people do not believe that I have chronic pain.
Chronic pain has changed my nature more to be positive and understanding, accepting different kind of people
Others think that people with chronic pain should be able to tolerate pain better as time goes on
Stereotypes about people with pain do not apply to me
I feel that people can tell that I have pain by the way I look or behave
I feel that people discriminate against me because I have pain
People often patronize me, or treat me like a child, because I have chronic pain
Living with pain has made me a tough survivor
Others think that I can’t achieve much in life because I have pain
Being around people who don’t have chronic pain makes me feel inadequate
I stay away from social situations in order to protect my family or friends from embarrassment
Chronic pain is preventing me from having romantic relationships (I cannot – due to the chronic pain)
Nobody is interested in me in a romantic way because I have chronic pain (I would like to – but no one seems interested because of my condition)
In general, I am able to live my life the way I want to
The following questions are about activities you might do during a typical day. Please choose the choice that applies to you.

Question Title

* 3. Shopping:

Question Title

* 4. Housekeeping :

Question Title

* 5. Mode of transportation:

Part two: Questions about you and your pain level

Question Title

* 6. Gender

Question Title

* 7. Please indicate your average daily pain level (Numerical Pain Rating Scale score) – where 0 represents no pain and 10 represents the worst possible pain

Question Title

* 8. Reduction in your Quality of Life: 10 represents your quality of life before your pain condition started, please select the number which represents your perception of your quality of life now.

Question Title

* 9. How long ago were you diagnosed with the disease (if known)?

Question Title

* 10. How long ago were you diagnosed with the chronic pain?

Question Title

* 11. Age?

Question Title

* 14. Do you think this kind of pan-European survey would achieve more visibility for chronic pain ?

Question Title

* 15. Do you think this survey will help politicians and decision-makers see the large-scale problem of chronic pain?

Question Title

* 16. Do you wish to receive the results of this questionnaire?

Question Title

* 17. Do you wish to participate in future questionnaires?

Question Title

* 18. Do you wish to receive the Pain Alliance Europe newsletter?

Question Title

* 19. If you have responded ‘yes’ to any of the last three questions, please type in your email address. Your e-mail address will only be used for the purpose you have selected. It will not be given to third parties.

Thank your for taking part in this survey
 
This survey was sent to you by Pain UK and the charity members of Pain UK.

Find out more about the Pain UK charities on https://painuk.org/members/charities/ 

Visit http://www.pae-eu.eu/surveys to see the results of previous surveys by Pain Alliance Europe on chronic pain, diagnosis, treatment and work.

T