Dear Participant,
Thank you for contributing to our study exploring the experiences and support needs of people who have recently been bereaved because of MND. The information from this survey will help to improve bereavement supports and services in the community. We value your participation. Your information will be protected by La Trobe University's strict privacy and confidentiality rules. You and your individual answers will not be identified.
Not all questions will apply to every situation but we would like to have some background information on you and your deceased partner/relative/friend, the end of life care they received, what bereavement services you accessed and how helpful they were. We are also interested to know what you feel could have worked better for you, and, importantly, how you are feeling now.
You may find some of the questions difficult as you recall your loss. However, in our previous work, many bereaved people have told us that participation in research was helpful. If you feel distressed at any time during completion of the questionnaire, or after completion, please contact the MND Association in your state (1800 777 175) or refer to the list of support services accompanying this questionnaire.
If you have a disability that makes it difficult for you to complete the form without assistance, or want further information regarding the survey, please contact the Research Officer, Denise Howting, on d.howting@latrobe.edu.au
Please complete this questionnaire if you were the closest person to the deceased. The survey should take approximately 30 minutes to complete.

Thank you for helping us with this research

We greatly value your participation

This survey has 7 sections:

Section 1 - Is about you as the carer or the closest person to the deceased
Section 2 - Is about your deceased partner/relative/friend
Section 3 - Is about your experience caring for your partner/relative/friend with MND
Section 4 - Is about exploring your current feelings
Section 5 - Is about the bereavement support you received after your partner/relative/friend died
Section 6 - Is about your experience with your MND Association in end of life care and bereavement support
Section 7 - Further comments

For each question, please tick or mark the appropriate box, for example,
Are you:  Male  Female
Or write your response in the space provided.

Page 1 of 13

Loading...
You have selected an option that triggers this survey to end right now. To save your responses and end the survey, click the button below to do so. If you have selected the wrong option by accident and do not wish to leave the survey, you may click the other button below to continue, which will also remove the value of the option you just selected to allow you to enter it again and continue the survey.
The response has now been removed for the last question for which you selected a value. You may now enter a new response for that question and continue the survey.
 Working...
This value you provided is not a number. Please try again.
This value you provided is not an integer. Please try again.
The value entered is not a valid Vanderbilt Medical Record Number (i.e. 4- to 9-digit number, excluding leading zeros). Please try again.
The value you provided must be within the suggested range.
The value you provided is outside the suggested range.
This value is admissible, but you may wish to verify.
The value entered must be a time value in the following format HH:MM within the range 00:00-23:59 (e.g., 04:32 or 23:19).
This field must be a 5 or 9 digit U.S. ZIP Code (like 94043). Please re-enter it now.
This field must be a 10 digit U.S. phone number (like 415 555 1212). Please re-enter it now.
This field must be a valid email address (like joe@user.com). Please re-enter it now.
The value you provided could not be validated because it does not follow the expected format. Please try again.
Required format:
/^((29([-\/])02\3(\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00)))|((((0[1-9]|1\d|2[0-8])([-\/])(0[1-9]|1[012]))|((29|30)([-\/])(0[13-9]|1[012]))|(31([-\/])(0[13578]|1[02])))(\11|\15|\18)\d{4}))$/
/^((02([-\/])29\3(\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00)))|((((0[1-9]|1[012])([-\/])(0[1-9]|1\d|2[0-8]))|((0[13-9]|1[012])([-\/])(29|30))|((0[13578]|1[02])([-\/])31))(\11|\15|\19)\d{4}))$/
/^(((\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00))([-\/])02(\6)29)|(\d{4}([-\/])((0[1-9]|1[012])(\9)(0[1-9]|1\d|2[0-8])|((0[13-9]|1[012])(\9)(29|30))|((0[13578]|1[02])(\9)31))))$/
/^((29([-\/])02\3(\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00)))|((((0[1-9]|1\d|2[0-8])([-\/])(0[1-9]|1[012]))|((29|30)([-\/])(0[13-9]|1[012]))|(31([-\/])(0[13578]|1[02])))(\11|\15|\18)\d{4})) (\d|[0-1]\d|[2][0-3]):[0-5]\d$/
/^((02([-\/])29\3(\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00)))|((((0[1-9]|1[012])([-\/])(0[1-9]|1\d|2[0-8]))|((0[13-9]|1[012])([-\/])(29|30))|((0[13578]|1[02])([-\/])31))(\11|\15|\19)\d{4})) (\d|[0-1]\d|[2][0-3]):[0-5]\d$/
/^(((\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00))([-\/])02(\6)29)|(\d{4}([-\/])((0[1-9]|1[012])(\9)(0[1-9]|1\d|2[0-8])|((0[13-9]|1[012])(\9)(29|30))|((0[13578]|1[02])(\9)31)))) (\d|[0-1]\d|[2][0-3]):[0-5]\d$/
/^((29([-\/])02\3(\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00)))|((((0[1-9]|1\d|2[0-8])([-\/])(0[1-9]|1[012]))|((29|30)([-\/])(0[13-9]|1[012]))|(31([-\/])(0[13578]|1[02])))(\11|\15|\18)\d{4})) (\d|[0-1]\d|[2][0-3])(:[0-5]\d){2}$/
/^((02([-\/])29\3(\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00)))|((((0[1-9]|1[012])([-\/])(0[1-9]|1\d|2[0-8]))|((0[13-9]|1[012])([-\/])(29|30))|((0[13578]|1[02])([-\/])31))(\11|\15|\19)\d{4})) (\d|[0-1]\d|[2][0-3])(:[0-5]\d){2}$/
/^(((\d{2}([13579][26]|[2468][048]|04|08)|(1600|2[048]00))([-\/])02(\6)29)|(\d{4}([-\/])((0[1-9]|1[012])(\9)(0[1-9]|1\d|2[0-8])|((0[13-9]|1[012])(\9)(29|30))|((0[13578]|1[02])(\9)31)))) (\d|[0-1]\d|[2][0-3])(:[0-5]\d){2}$/
/^(?!\.)((?!.*\.{2})[a-zA-Z0-9\u0080-\u00FF\u0100-\u017F\u0180-\u024F\u0250-\u02AF\u0300-\u036F\u0370-\u03FF\u0400-\u04FF\u0500-\u052F\u0530-\u058F\u0590-\u05FF\u0600-\u06FF\u0700-\u074F\u0750-\u077F\u0780-\u07BF\u07C0-\u07FF\u0900-\u097F\u0980-\u09FF\u0A00-\u0A7F\u0A80-\u0AFF\u0B00-\u0B7F\u0B80-\u0BFF\u0C00-\u0C7F\u0C80-\u0CFF\u0D00-\u0D7F\u0D80-\u0DFF\u0E00-\u0E7F\u0E80-\u0EFF\u0F00-\u0FFF\u1000-\u109F\u10A0-\u10FF\u1100-\u11FF\u1200-\u137F\u1380-\u139F\u13A0-\u13FF\u1400-\u167F\u1680-\u169F\u16A0-\u16FF\u1700-\u171F\u1720-\u173F\u1740-\u175F\u1760-\u177F\u1780-\u17FF\u1800-\u18AF\u1900-\u194F\u1950-\u197F\u1980-\u19DF\u19E0-\u19FF\u1A00-\u1A1F\u1B00-\u1B7F\u1D00-\u1D7F\u1D80-\u1DBF\u1DC0-\u1DFF\u1E00-\u1EFF\u1F00-\u1FFF\u20D0-\u20FF\u2100-\u214F\u2C00-\u2C5F\u2C60-\u2C7F\u2C80-\u2CFF\u2D00-\u2D2F\u2D30-\u2D7F\u2D80-\u2DDF\u2F00-\u2FDF\u2FF0-\u2FFF\u3040-\u309F\u30A0-\u30FF\u3100-\u312F\u3130-\u318F\u3190-\u319F\u31C0-\u31EF\u31F0-\u31FF\u3200-\u32FF\u3300-\u33FF\u3400-\u4DBF\u4DC0-\u4DFF\u4E00-\u9FFF\uA000-\uA48F\uA490-\uA4CF\uA700-\uA71F\uA800-\uA82F\uA840-\uA87F\uAC00-\uD7AF\uF900-\uFAFF\.!#$%&'*+-/=?^_`{|}~\-\d]+)@(?!\.)([a-zA-Z0-9\u0080-\u00FF\u0100-\u017F\u0180-\u024F\u0250-\u02AF\u0300-\u036F\u0370-\u03FF\u0400-\u04FF\u0500-\u052F\u0530-\u058F\u0590-\u05FF\u0600-\u06FF\u0700-\u074F\u0750-\u077F\u0780-\u07BF\u07C0-\u07FF\u0900-\u097F\u0980-\u09FF\u0A00-\u0A7F\u0A80-\u0AFF\u0B00-\u0B7F\u0B80-\u0BFF\u0C00-\u0C7F\u0C80-\u0CFF\u0D00-\u0D7F\u0D80-\u0DFF\u0E00-\u0E7F\u0E80-\u0EFF\u0F00-\u0FFF\u1000-\u109F\u10A0-\u10FF\u1100-\u11FF\u1200-\u137F\u1380-\u139F\u13A0-\u13FF\u1400-\u167F\u1680-\u169F\u16A0-\u16FF\u1700-\u171F\u1720-\u173F\u1740-\u175F\u1760-\u177F\u1780-\u17FF\u1800-\u18AF\u1900-\u194F\u1950-\u197F\u1980-\u19DF\u19E0-\u19FF\u1A00-\u1A1F\u1B00-\u1B7F\u1D00-\u1D7F\u1D80-\u1DBF\u1DC0-\u1DFF\u1E00-\u1EFF\u1F00-\u1FFF\u20D0-\u20FF\u2100-\u214F\u2C00-\u2C5F\u2C60-\u2C7F\u2C80-\u2CFF\u2D00-\u2D2F\u2D30-\u2D7F\u2D80-\u2DDF\u2F00-\u2FDF\u2FF0-\u2FFF\u3040-\u309F\u30A0-\u30FF\u3100-\u312F\u3130-\u318F\u3190-\u319F\u31C0-\u31EF\u31F0-\u31FF\u3200-\u32FF\u3300-\u33FF\u3400-\u4DBF\u4DC0-\u4DFF\u4E00-\u9FFF\uA000-\uA48F\uA490-\uA4CF\uA700-\uA71F\uA800-\uA82F\uA840-\uA87F\uAC00-\uD7AF\uF900-\uFAFF\-\.\d]+)((\.([a-zA-Z\u0080-\u00FF\u0100-\u017F\u0180-\u024F\u0250-\u02AF\u0300-\u036F\u0370-\u03FF\u0400-\u04FF\u0500-\u052F\u0530-\u058F\u0590-\u05FF\u0600-\u06FF\u0700-\u074F\u0750-\u077F\u0780-\u07BF\u07C0-\u07FF\u0900-\u097F\u0980-\u09FF\u0A00-\u0A7F\u0A80-\u0AFF\u0B00-\u0B7F\u0B80-\u0BFF\u0C00-\u0C7F\u0C80-\u0CFF\u0D00-\u0D7F\u0D80-\u0DFF\u0E00-\u0E7F\u0E80-\u0EFF\u0F00-\u0FFF\u1000-\u109F\u10A0-\u10FF\u1100-\u11FF\u1200-\u137F\u1380-\u139F\u13A0-\u13FF\u1400-\u167F\u1680-\u169F\u16A0-\u16FF\u1700-\u171F\u1720-\u173F\u1740-\u175F\u1760-\u177F\u1780-\u17FF\u1800-\u18AF\u1900-\u194F\u1950-\u197F\u1980-\u19DF\u19E0-\u19FF\u1A00-\u1A1F\u1B00-\u1B7F\u1D00-\u1D7F\u1D80-\u1DBF\u1DC0-\u1DFF\u1E00-\u1EFF\u1F00-\u1FFF\u20D0-\u20FF\u2100-\u214F\u2C00-\u2C5F\u2C60-\u2C7F\u2C80-\u2CFF\u2D00-\u2D2F\u2D30-\u2D7F\u2D80-\u2DDF\u2F00-\u2FDF\u2FF0-\u2FFF\u3040-\u309F\u30A0-\u30FF\u3100-\u312F\u3130-\u318F\u3190-\u319F\u31C0-\u31EF\u31F0-\u31FF\u3200-\u32FF\u3300-\u33FF\u3400-\u4DBF\u4DC0-\u4DFF\u4E00-\u9FFF\uA000-\uA48F\uA490-\uA4CF\uA700-\uA71F\uA800-\uA82F\uA840-\uA87F\uAC00-\uD7AF\uF900-\uFAFF]){2,63})+)$/i
/^[-+]?\b\d+\b$/
/^[a-z]+$/i
/^\d{10}$/
/^[a-z0-9-_]+$/i
/^[-+]?[0-9]*\.?[0-9]+([eE][-+]?[0-9]+)?$/
/^-?\d+,\d$/
/^-?\d+\.\d$/
/^-?\d+,\d{2}$/
/^-?\d+\.\d{2}$/
/^-?\d+,\d{3}$/
/^-?\d+\.\d{3}$/
/^-?\d+,\d{4}$/
/^-?\d+\.\d{4}$/
/^[-+]?[0-9]*,?[0-9]+([eE][-+]?[0-9]+)?$/
/^(\(0[2-8]\)|0[2-8])\s*\d{4}\s*\d{4}$/
/^(?:\(?([2-9]0[1-9]|[2-9]1[02-9]|[2-9][2-9][0-9])\)?)\s*(?:[.-]\s*)?([2-9]\d{2})\s*(?:[.-]\s*)?(\d{4})(?:\s*(?:#|x\.?|ext\.?|extension)\s*(\d+))?$/
/^\d{4}$/
/^[ABCEGHJKLMNPRSTVXY]{1}\d{1}[A-Z]{1}\s*\d{1}[A-Z]{1}\d{1}$/i
/^\d{3}-\d\d-\d{4}$/
/^([0-9]|[0-1][0-9]|[2][0-3]):([0-5][0-9])$/
/^[0-5]\d:[0-5]\d$/
/^[0-9]{4,9}$/
/^\d{5}(-\d{4})?$/