QUESTIONNAIRE ON SOCIAL EXCLUSION & SUPPORT

We would like to invite you to participate in this original research project
The questionnaire is largely based on a research project created by a specific working group, sponsored by Roche.
You should only participate if you want to and choosing not to take part will not disadvantage you in any way. Before you decide whether you want to take part, it is important for you to understand why the research is being carried out and what your participation will involve.

This study is looking at the experiences of adults (aged 18 years or older) who have been diagnosed with a mental illness.
- If you have received this survey and you are less than 18 years of age then please do not complete the survey.
- If you never had a diagnosis of mental illness then please do not complete the survey.

You are under no obligation to take part. It is entirely up to you to decide whether or not to take part. This survey is anonymous and nobody will know whether you decide to take part or not.

By taking part, you will be involved in research which will help us to understand the problems of people with a diagnosis of mental illness.

By completing and returning this questionnaire, you consent to the processing of your personal information for the purposes of this research study.
The results of this study may be published in scientific journals or presented at scientific conferences, but as the survey is anonymous there is no way of knowing who has taken part. If you would like to receive a report on the overall findings of this study then please contact Gamian (info@gamian.eu) and we will send you a copy of this report when it is available.

We estimate that this will take about 30 minutes of your time. If you wish take more time, please download the PDF copy.

Questions marked with a * are required.

 
* I agree. I understand that the information will be treated as strictly confidential and handled in accordance with the provisions of the EC Data Protection Directive (95/46.EC).
Yes, I agree
 
* A1 What is your gender?
1. Male
2. Female
 
* A2. In which country do you live?
 
* A3. In what year were you born?
 
* A5. What is the highest level of education that you have completed?
1. Non university (Primary education/Secondary education -> 18 year)
2. University degree (bachelor/master)
3. Other Further Education or Vocational Training
 
* A6. Did you participate in previous GAMIAN surveys?
1. Yes
2. No, it is my first participation
3. I don’t remember
 
* A7. Do you know what mental health diagnosis your doctor has made in your case? (please check only your primary diagnosis)
1. Schizophrenia
2. Bipolar Disorder
3. Depression
4. Anxiety
5. Attention Deficit and Hyperactivity Disorder (ADHD)
6. Other
7. I don’t know / I’m not sure
 
* A8. Are you a member of a patients' association?
2. No
Yes (Please write the name of the association) 
 
SOCIAL 'INCLUSION': your experience of living with a mental illness.
 
* B1. How important is it that you TAKE PART in the community in which you live (that you are socially included, and NOT excluded)??
1. Very important to me
2. Quite important
3. Not important
4.Other
 
* B2. Which of the following ABILITIES are MOST AFFECTED by your Mental Illness? [Please tick the THREE most important.] My ability to …
1. Live independently, day to day (for instance, being able to do my own shopping; manage my money; take medicine properly; make appointments myself, etc).
2. Ask for medicine and healthcare.
3. Have an education.
4. Have work training.
5. Work, earn an income, or have a career.
6. Volunteer.
7. Choose my own place to live (for instance, living in protected housing; or not having to live in poor-quality housing; or not having to live in my parents’ house, if I am a younger person; or not having to live in my children’s house, if I am an older person).
8.Vote.
9.Plan, and make my own choices for the future.
10.Get new opportunities in life.
11.None of the above.
 
* B3. Do any of the following SYMPTOMS of Your Mental Illness make it hard for you to be MORE ACTIVELY INVOLVED IN YOUR COMMUNITY (to be socially included)?
1. Yes
2. Sometimes
3. No
1 2 3 N/A
1. Having hallucinations, delusions, etc
2. A lack of motivation, not wanting to be social, etc
3. Not being able to keep my mind on a subject for very long Other symptoms that make it hard to be socially included.
 
* B4 Do negative attitudes to Mental Illness in society (STIGMATISATION) have a damaging impact on any of the following?
1. Always
2. Often
3. Rarely
4. Never
1 2 3 4 N/A
1. On my physical health.
2. On my mental health.
3. On my inclusion in society.
 
QUESTIONS ON YOUR WORKING SITUATION
 
* C1. Are you working?
1. Yes, I’m currently working
2. No, I’m currently not working
3. No, I never worked
 
* C2. If you are working, what is currently your working situation?
If you are not working, what was your working situation?
1. full-time work
2. part-time work (my choice)
3. part-time work (forced, due to my illness)
4. Unpaid work (volunteer/ trainee)
5. Full-time student
6. Other
7. I never worked
 
* C3 Does your Mental Illness have any NEGATIVE IMPACT upon your income?
1. A lot.
2. Somewhat.
3. Has had no influence.
 
* C4. If you currently do not work, what are the BARRIERS hindering you from going (back) to work (in general)?
1. I will lose my current state allowances/welfare/benefit payments.
2. My healthcare team objects to my getting back to work.
3. My family objects to my getting back to work.
4. I fear relapse if I get back to work (in general).
5. My symptoms make it impossible for me to work (in general).
6. Other
 
What should the government/state organisations do to help people with Mental Illness be more socially included?
 
* D1 Does your government OFFER YOU HELP in receiving …?
1= A lot of help
2= Some help
3= No help
1 2 3 N/A
1. Medication
2. Other types of medical help, apart from just medicines (for instance, dietary advice).
3. Care from other healthcare staff than just a psychiatrist.
4. Counseling
5. Family support and education programmes
6. Higher education
7. Work training
8. Supported employment
9. Support for voluntary work.
10. Different types of housing that might suit me.
11. Living independently, day to day
for instance, being able to do their own shopping; being able to manage their money;
being able to take their medicine properly; make appointments, etc...
12. A social life
13. Relationship advice (to help them meet new people, or to maintain relationships).
14. Overcoming discrimination
15. Other
 
* D2a What SINGLE CHANGE by the government/state organisations (in the following three areas) would most help you be socially included?
For my MEDICAL AND SOCIAL CARE, the government/state organisations should help me with …
[Please tick one option only.]
1.Getting counseling/psychotherapy.
2.Getting medicine.
3. Getting care from other healthcare staff than just a psychiatrist (for instance, from a dietician).
4. Getting information/psycho education
5. Contacting other patients (self help group)
6. Getting rehabilitation.
7. Support for my carer/s (for instance, some respite time for them).
8. Reducing discrimination in medical and social care.
9. Other
 
* D2b What SINGLE CHANGE by the government/state organisations (in the following three areas) would most help you be socially included?
For my EVERYDAY LIVING, the government/state organisations should help me with … [Please tick one option only.]
1.Taking (physical) exercise.
2. My leisure activities.
3. Reducing loneliness and isolation.
4. Reducing feelings of helplessness, or loss of dignity.
5. My finances/welfare/any debt problems.
6. Managing drug or alcohol abuse.
7. Other
 
* D2c. What SINGLE CHANGE by the government/state organisations (in the following three areas) would most help you be socially included
For LIVING IN THE COMMUNITY, the government/state organisations should help me with … [Please tick one option only.]
1. Getting (or staying in) education/training.
2. Getting (or staying in) work training.
3. Getting (or keeping) paid work.
4. Getting (or staying in) voluntary work.
5. Getting (or keeping) welfare benefits.
6. Managing debt.
7. My housing needs.
8. Transport/getting around.
9. Learning skills to help me live independently.
10. Retaining my relationship with my family/partner.
11. Reducing any exploitation of me by other people.
12. Reducing any discrimination against me from employers.
13. Other
 
* D3. Which of the following aspects of support and information are most helpful for carers of people with a mental illness ?
[Please tick only the THREE most important.]
1. Single-family therapy to educate an individual and their family about the illness.
2. Multifamily education involving a group of individuals and their families.
3. Good information about available services (e.g. housing, benefits, money, getting a break).
4. Financial support to compensate for direct and indirect loss of income.
5. Respect and consideration by health and social care workers who create management plans.
6. Being able to take a holiday
7. Time off from caring each week.
8. Support and careers advice for young carers from their school.
9. Flexible working environment to accommodate a work–life balance that promotes recovery.
10. Other
 
* D4. Which of the points listed below are most important to include in awareness-raising campaigns about a mental illness for the general public?
[Please tick only the THREE most important.]
1. Many people with a mental illness may have a good outcome, with appropriate treatment.
2. Patients may experience positive, negative and/or cognitive symptoms.
3. Antipsychotic medication reduces psychotic symptoms and risk of relapse.
4. New forms of treatment are being researched.
5. Psychosocial therapies should be made accessible to more patients.
6. Coexisting physical illness is an important issue.
7. Advocacy and ‘self-help’ groups should be available to individuals with a mental illness
8. Employers should pay attention to the workplace needs of people with a mental illness .
9. Educational institutions should accommodate the needs of students with a mental illness
10. Other