1. Information & Consent

Name of the institution responsible for the study: University of Leicester.

 IRAS number: 231942

Researcher: Damien Appleton, Clinical Neuropsychologist.
This research is asking male family members (husband/partner/son/father) and significant others of people with multiple sclerosis (MS) to complete a series of online questionnaires investigating levels of social support, carer burden, willingness to seek help and attributes related to gender role.
If you decide to complete this survey, you will be required to complete it in one sitting, which means you cannot save your responses half way through and come back to it later to complete. It should take approximately 20- 30 minutes to complete and your time is greatly appreciated.
Your responses will be anonymous and no identifiable information will be included in any reports that are produced with the results of this survey. The responses will be stored securely on a computer that only the research team has access to and all data will be destroyed after 7 years. Should you wish to withdraw at any time, you have every right to do so and will need to contact the researchers to request this.
By choosing to complete this survey and submit your results, you are agreeing to the terms above and consenting to your anonymous data to be used in a research report. You are also confirming that you are a male  family member  or significant other of a person with MS.
Should you wish to do so, you can choose to provide your contact details in the form of an email address to be entered into a draw to win one of four £50/$50 Amazon vouchers.
If completing this survey causes you any emotional distress, please contact your GP to talk through support options that may be available to you.
We thank you again for your time taken to complete this survey. Should you wish to complete the questionnaires in written form, please contact the researchers and this can be arranged.
Contact Details:
Please email damien.appleton@gov.gg if you have any other questions or require further information.

If you have any complaints or concerns please contact Noelle Robertson, Academic Supervisor, Leicester University  nr6@leicester.ac.uk

* 1. How old are you?

* 2. What country do you live in? e.g. Australia/ Guernsey/ UK

* 3. How long have you been supporting/caring for someone with MS? (partner/spouse/parent/child)

* 4. How long have you been in a relationship with the above person with MS?

* 5. If you have children, how many children do you have?

* 6. If you have children, how old are they? 

* 7. How many hours a week do you work?

* 8. How many hours of professional care for support with physical needs do you receive?

* 9. How many hours of professional support (GP, Consultant, and other health professionals) do you receive?

* 10. How many hours do you spend attending psychological therapy/counselling/support groups?

* 11. Please read the following statements and indicate the extent to which you agree with them by selecting the corresponding circle next to the statement.

  Strongly Disagree Disagree Slightly Disagree Slightly Agree Agree Strongly Agree
Affection with other men makes me tense
Talking (about my feelings) during sexual relations is difficult for me
I have difficulty expressing my emotional needs to my partner
Men who touch other men make me uncomfortable
Finding time to relax is difficult for me
I have difficulty expressing my tender feelings
Hugging other men is difficult for me
Winning is a measure of my value and personal worth
My needs to work or study keep me from my family or leisure more than I would like
I strive to be more successful than others
I do not like to show my emotions to other people
My work or school often disrupts other parts of my life (home, health, leisure, etc)
Being very personal with other men makes me feel uncomfortable
Being smarter or physically stronger than other men is important to me
Overwork and stress, caused by a need to achieve on the job or in school, affects/hurts my life
I like to feel superior to other people

* 12. How often do you feel...

  Never Rarely Sometimes Quite Frequently Nearly Always
that because of the time you spend with your relative that you don't have enough time for yourself?
stressed between caring for your relative and trying to meet other responsibilities (work/family)?
angry when you are around your relative?
that your relative currently affects your relationship with family members or friends in a negative way?
strained when you are around your relative?
that your health has suffered because of your involvement with your relative?
that you don't have as much privacy as you would like because of your relative? 
that your social life has suffered because you are caring for your relative? 
that you have lost control of your life since your relative's illness?
uncertain about what to do about your relative? 
you should be doing more for your relative? 
you could do a better job in caring for your relative?

* 13. If you needed it, how often is someone available...

  None of the time A little of the time Some of the time Most of the time All of the time
to help you if you were confined to bed?
to take you to the doctor if you need it? 
to prepare your meals if you are unable to do it yourself?
to help with daily chores if you were sick?
to have a good time with?
to turn to for suggestions about how to deal with a personal problem?
who understands your problems?
to love and make you feel wanted?

* 14. Please read the following statements and indicate the extent to which you identify with them by selecting the corresponding circle next to the statement.

  Do not identify with statement at all Do not identify with statement Identify with statement Identify completely with statement
If I were afraid of heights, I would try to conceal this from my friends
No conflict in our marriage could be so severe that my partner and I could not solve it on our own
Were a problem to develop in my sex life, I would either need to solve it alone or to live with it, because I would not be able to discuss it with anyone
If, for whatever reason, I were to have prolonged difficulty walking, I would do whatever possible to avoid asking help from anyone
When something breaks down in my home, I usually persist in trying to fix it myself, even when it is difficult and I am wasting time and money
If I were suddenly afraid to go out in the street, I believe I could overcome without help from anyone else
If a serious problem were to arise in my marriage, I would be willing to talk about it with a professional, or with a friend or relative, but in any case I would not keep it to myself
Sexual problems are a difficult topic to talk about, but if I were to have such a problem I would use the services of an expert
If I ever have difficulty seeing, I will try to arrange my life so no one will notice
If I were to lose control and hurt my child in a moment of anger, I would need to make sure that no one would know about it
Discovering unexpectedly that my spouse was hitting my child too hard would lead me to seek out someone who could intervene as quickly as possible
Were my spouse to suggest that we go to a family therapist, I would take the position that we are able to solve our own problems
I believe that a time of mourning for a loved one would be a time when I would need other people
If both legs were to be broken in an accident, I would prefer to stay home for a few months rather than be pushed around in a wheelchair
Some problems are so distressing that they cannot be managed alone
If I were to develop an irrational fear of the dark and I were concerned that it might affect my child, I would seek out a person who could help me overcome my fear
At the funeral of a loved one, I would do all I could do to appear strong and not show any weakness
If I had a chronic illness, such as diabetes, I would seek out persons who could offer me guidance in addition to the medical treatment
If a member of my family were to become mentally ill, I would hope for contact with an expert who could advise me in how I might be of help
If I thought I had a problem of excessive drinking, I could discuss it with persons who might be able to help me
Problems of sexual dysfunction would cause me to seek outside help
During a period of bereavement for a loved one, I would allow friends and relatives to take over some of the tasks for which I am usually responsible
Becoming addicted to drugs is the kind of situation that would cause me to place my fate in the hands of an expert
If, in the course of medical treatment for a physical ailment, I were to experience serious anxiety, I would ask the doctor to treat the anxiety
If I am ever depressed, I will seek out the appropriate person to tell about it

* 15. The items below inquire about what kind of person you think you are. Each item consists of a PAIR of characteristics, with the letters A-E in between. For example:

Not at all artistic A......B......C......D......E Very artistic

Each pair describes contradictory characteristics - that is, you cannot be both at the same time, such as very artistic and not at all artistic.

The letters form a scale between the two extremes. You are to chose a letter which describes where YOU fall on the scale. For example, if you think that you have no artistic ability, you would choose A. If you think that you are pretty good, you might choose D. If you are only medium, you might choose C, and so forth.

  A B C D E
Not at all aggressive - Very aggressive
Not at all independent - Very independent
Not at all emotional - Very emotional
Very submissive - Very dominant
Not at all excitable in a major crisis - Very excitable in a major crisis
Very passive - Very active
Not at all able to devote - Able to devote self completely to others self completely to others
Very rough - Very gentle
Not at all helpful to others - Very helpful to others
Not at all competitive - Very competitive
Very home oriented - Very worldly
Not at all kind - Very kind
Indifferent to others' approval - Highly needful of others’ approval
Feelings not easily hurt - Feelings easily hurt
Not at all aware of feelings of others - Very aware of feelings of others
Can make decisions easily - Has difficulty making decisions
Gives up very easily - Never gives up easily
Never cries - Cries very easily
Not at all self-confident - Very self-confident
Feels very inferior - Feels very superior
Not at all understanding of others - Very understanding of others
Very cold in relations with others - Very warm in relations with others
Very little need for security - Very strong need for security
Goes to pieces under pressure - Stands up well under pressure

* 16. If you wish, you can leave an email address/telephone number below to be entered into a draw to win one of four £50/$50 Amazon vouchers. This is completely optional.

Thank you again for taking the time to complete this survey, it is greatly appreciated.

If you feel completing this survey has caused you any emotional distress and you are concerned, please contact your GP to talk through the support that may be available to you in your area.