Experience with End of Life Care and Bereavement Support in MND: A National Survey
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 email@example.com
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.
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