Mapping the characteristics & impacts of Terminal Lucidity in children
What is the survey about?
Unusually enhanced mental clarity characterised by spontaneous and often animated changes in verbal and/or non-verbal behaviour, even in people with severely impaired brain conditions that would make such mental clarity unlikely, have been reported for more than 250 years. Since these unexpected surges of mental clarity have predominantly been reported from the last minutes, hours, or days before a person’s death, they have come to be termed Terminal Lucidity (TL). Until today, however, TL remains little understood. Although it is often reported in those of older age who have dementia, anecdotal evidence suggests TL is also very common in children who are terminally ill.
More research is needed to better understand TL in children, as this will provide important details regarding the end-of-life stage of children who are terminally unwell, what their and their parents/caregivers needs might be around this time, and how medical personnel can respond in appropriate ways to meet those needs. This study, which is funded by the Bial Foundation, aims to address the need for more information about TL in children and will be the first study of its kind in the world to do so.
Who can take part?
To participate in this project, you will need to:
- Have witnessed a TL episode in a child at some stage in your life.
- Be proficient in the English language.
- Have access to the internet to complete the online questionnaire.
- Be over the age of 18 years.
What will you be asked to do?
If you agree to take part in this research, you are invited to complete an online questionnaire, which will take approximately 30-40 minutes to complete. The questionnaire will ask you questions about the TL episode you witnessed, the circumstances of the passing of the child who had the TL episode, as well as the psychological impact of witnessing TL on your spiritual and religious beliefs, attitudes towards life and death, and nondual awareness.
Participation is voluntary, and it is not expected that involvement in this research will expose you to any risk. Although recollection of TL experiences is often reported as being a positive experience, we acknowledge that such recollection may also raise unanticipated emotions for some people. If this does occur for you while participating in this study, please contact Natasha directly, who will be able to discuss these emotions with you and provide advice around appropriate support networks that may be useful to connect with. Alternatively, please feel free to visit or contact one of the following organizations:
There are no conflicts of interest identified in this study. At the completion of the questionnaire, you will be given the option to receive a courtesy copy of an article on TL, as an acknowledgment of the time you have given to this research.
How will information be collected and used?
At the completion of the questionnaire, your responses will be automatically saved to an online password-protected data file. Only Natasha and two other members of the research team will access that data, although it will be ‘processed’ along with the data from other participants. All of this ‘processed’ information will be anonymized, so we will not be able to link any of your responses back to you or anyone else who participates in this study. We will keep this information securely for 10 years and may make the ‘processed’ data on a secure online repository, for other researchers to access if they wish. We must stress again that any information you give will be fully anonymized.
You will not be asked to provide your name or other identifiable details as part of the questionnaire responses. The only time you will be asked to provide your email address is at the completion of the questionnaire if you would like a summary of the findings emailed to you once the research is complete, and/or if you would like to receive a courtesy copy of the article – these, however, are optional.
What are your rights?
You are under no obligation to participate in this research, but if you choose to, you should know that you can:
- decline to answer any particular questions;
- withdraw from the research up to 7 days after you have submitted your responses. To enable this, you will be asked to create a unique identifier (this can be a name or number or a mixture of both), so we can link your data to your identifier. You do not need to provide your own name or any other details;
- ask any questions about the study at any time during participation, by contacting Natasha directly;
- provide information on the understanding that your name will not be used or any identifiable information linked to your responses in any way;
- be given access to a summary of the project findings when it is concluded, should you wish to receive one;
- receive a courtesy copy of an article about TL as acknowledgement of your time participating in this research.
What next?
If you are interested in completing the questionnaire, please click on the button at the bottom of this page to begin.
Who can I contact?
If you have any questions about the research, please feel free to contact Natasha directly, via email:
Associate Professor Natasha Tassell-Matamua, PhD
Centre for Indigenous Psychologies, School of Psychology, Massey University, Aotearoa New Zealand
N.A.Tassell-Matamua@massey.ac.nz
This project has been reviewed and approved by the Massey University Human Ethics Committee: Southern A, Application 22/52. If you have any concerns about the conduct of this research, please contact Dr Negar Partow, Chair, Massey University Human Ethics Committee: Southern A, telephone 04 801 5799 x 63363, email humanethicsoutha@massey.ac.nz.