Adolescents' Experiences of Parental Young-Onset Dementia

  • STATUS
    Recruiting
Updated on 19 August 2022
Investigator
Elizabeth Bilsborough
Primary Contact
Emory University (online study) Contact
dementia
Online studies
Accepts healthy volunteers

Summary

This study is a qualitative-descriptive exploration of the experiences of adolescents who have a parent with young-onset dementia (YOD), defined as symptom onset before the age of 65. A purposeful sample of approximately 20 to 25 adolescents between the ages of 13 and 19 who meet the study’s eligibility criteria will be invited to participate in one semi-structured Zoom interview exploring various aspects of their lives both in and outside of the home. 

The aims of this study are
1) to describe the overall experiences of adolescents who have a parent with YOD and how these experiences affect their lives both in and outside of the home;
2) to explore adolescents’ involvement in the care of their parent and whether they self-identify as caregivers; and
3) to better understand how adolescents who have a parent with YOD think about themselves and how their unique experiences shape their developing identities. The findings of this study will provide the basis for further inquiry into the lives of adolescents who have parents with YOD. The ultimate goal of this research is to identify these adolescents’ support needs to aid in the development, implementation, and evaluation of interventions tailored to this population.

Parental consent, as well as the adolescent’s assent, are required for participants under the age of 18. If the adolescent expresses interest in participating, a joint meeting with the parent will be scheduled via Zoom to: 1) review additional details about the study (e.g., confidentiality), 2) answer questions from the parent and/or adolescent, and 3) obtain informed consent as well as voluntary assent if the adolescent is under 18. It is important to note that assent is an ongoing process and will be reaffirmed throughout data collection

Description

Potential participants will be screened for eligibility according to the inclusion/exclusion criteria described below; those eligible will be invited to participate. Once eligible families have been identified, the PI will present the research study to the consenting parent. If the consenting parent is agreeable to the research study, they will be asked to talk to their adolescent(s) about the research study to gauge their interest in participating. 

If the adolescent expresses interest in participating, the PI will then schedule a joint meeting with their parent via Zoom to accomplish the following: 
1) review additional details about the study (e.g., confidentiality; potential risks and how we plan to mitigate them), 
2) answer questions from the parent and/or adolescent, and 
3) obtain informed consent as well as voluntary assent if the adolescent is under 18. The PI will then schedule one semi-structured, open-ended interview with the adolescent that will be conducted online via Zoom. 

The interview is expected to last approximately 60 minutes and will be both recorded and transcribed to ensure that the raw data are complete and accurate. In the week prior to their scheduled interview, adolescents will be emailed a link to complete a modified version of the Day Reconstruction Method (DRM) via Qualtrics. The DRM constitutes a form of experience sampling that is utilized to capture the details of these adolescents’ day-to-day lives (i.e., participation in caregiving tasks), providing important context for interview data. Developed by the Daniel Kahneman and colleagues in 2004, the DRM is a retrospective diary of individuals’ activities during the previous day, including what they were doing, who they were doing it with, and how it made them feel. Data obtained from the DRM will not be included in final analyses. Between the questionnaire and the interview, study participation will require no more than two hours of the adolescents' time over the course of one week. Participants will be mailed a $25 Visa gift card upon completion of the interview.

Parental consent, as well as the adolescent’s assent, are required for participants under the age of 18. If the adolescent expresses interest in participating, a joint meeting with the parent will be scheduled via Zoom to: 1) review additional details about the study (e.g., confidentiality), 2) answer questions from the parent and/or adolescent, and 3) obtain informed consent as well as voluntary assent if the adolescent is under 18. It is important to note that assent is an ongoing process and will be reaffirmed throughout data collection

Details
Condition Alzheimer's Disease, Dementia, Young-Onset Dementia
Clinical Study IdentifierTX301635
Last Modified on19 August 2022

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