Ignite Creation Date:
2024-05-06 @ 5:59 PM
Last Modification Date:
2024-10-26 @ 2:39 PM
Study NCT ID:
NCT05502055
Status:
RECRUITING
Last Update Posted:
2023-02-01
First Post:
2022-08-12
Brief Title:
Perspectives on Healthcare Access and Equity of People With Parkinsons Disease Identifying as LGBTQ
Sponsor:
Creighton University
Organization:
Creighton University
Study Overview
Official Title:
Perspectives on Healthcare Access and Equity of People With Parkinsons Disease Identifying as Lesbian Gay Bisexual Transgender Questioning Intersex or Two-spirit
Status:
RECRUITING
Status Verified Date:
2024-07
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
LGBTQ_PD
Brief Summary:
Study Rationale
Older adults who identify as lesbian gay bisexual transgender or queer LGBTQ have worse health than non-LGBTQ older adults They and their care partners face greater barriers to getting healthcare and support from friends and family This is because of lifelong stigma discrimination and isolation often separated from their families Parkinson disease PD is a disease that usually appears in older age so there may be many LGBTQ elders with PD but there is currently no information on how people with PD who are LGBTQ are coping with their disease and aging This study will begin to clarify their needs
HypothesisResearch Question
What are the experiences and perspectives of LGBTQ people living with PD their care partners and physicians managing people with PD
Study Design
The investigators will interview 20 people with PD half who identify as LGBTQ and half who are not The investigators will also interview their care partners and physicians who treat people with PD From the responses to the interview questions investigators will create a survey that will be sent to people across the country
Impact on DiagnosisTreatment of Parkinsons Disease
By understanding what LGBTQ people with PD need and what ideas they have for improving their healthcare better systems for meeting their needs can be built
Next Steps for Development
With this understanding future work can focus on educating healthcare providers and clinics to improve the ways they talk with and treat LGBTQ people with PD
Older adults who identify as lesbian gay bisexual transgender or queer LGBTQ have worse health than non-LGBTQ older adults They and their care partners face greater barriers to getting healthcare and support from friends and family This is because of lifelong stigma discrimination and isolation often separated from their families Parkinson disease PD is a disease that usually appears in older age so there may be many LGBTQ elders with PD but there is currently no information on how people with PD who are LGBTQ are coping with their disease and aging This study will begin to clarify their needs
HypothesisResearch Question
What are the experiences and perspectives of LGBTQ people living with PD their care partners and physicians managing people with PD
Study Design
The investigators will interview 20 people with PD half who identify as LGBTQ and half who are not The investigators will also interview their care partners and physicians who treat people with PD From the responses to the interview questions investigators will create a survey that will be sent to people across the country
Impact on DiagnosisTreatment of Parkinsons Disease
By understanding what LGBTQ people with PD need and what ideas they have for improving their healthcare better systems for meeting their needs can be built
Next Steps for Development
With this understanding future work can focus on educating healthcare providers and clinics to improve the ways they talk with and treat LGBTQ people with PD
Detailed Description:
This mixed-methods study has a qualitative study component 1 and a quantitative study component 2
Component 1 using a phenomenological inductive approach and Grounded Theory methodology the investigators will find and build themes from semi-structured interviews and focus groups with a LGBTQ and non-LGBTQ individuals with PD b their care partners and c physicians to identify the experiences and perspectives on their health care and participation in research
Component 2 survey development informed by results of Component 1 national distribution and analysis of LGBTQ and non-LGBTQ people with PD their caregivers and physicians on barriers and access to health and disease information healthcare delivery and participation in research
The investigators plan to recruit 10 LGBTQ individuals with PD 10 Non-LGBTQ individuals with PD 10 care partners and 10 healthcare providers for individual interviews and 50 LGBTQ older adults with PD and care partners for focus groups consisting of 6-8 individuals each For the national electronic survey investigators estimate needing a the sample size of approximately 380 responses calculated using a 95 confidence level Z score196 a standard deviation of 5 a 5 margin of error and a population of 30000 Purposive and Snowball sampling methods nonprobability sampling will be used
Component 1 using a phenomenological inductive approach and Grounded Theory methodology the investigators will find and build themes from semi-structured interviews and focus groups with a LGBTQ and non-LGBTQ individuals with PD b their care partners and c physicians to identify the experiences and perspectives on their health care and participation in research
Component 2 survey development informed by results of Component 1 national distribution and analysis of LGBTQ and non-LGBTQ people with PD their caregivers and physicians on barriers and access to health and disease information healthcare delivery and participation in research
The investigators plan to recruit 10 LGBTQ individuals with PD 10 Non-LGBTQ individuals with PD 10 care partners and 10 healthcare providers for individual interviews and 50 LGBTQ older adults with PD and care partners for focus groups consisting of 6-8 individuals each For the national electronic survey investigators estimate needing a the sample size of approximately 380 responses calculated using a 95 confidence level Z score196 a standard deviation of 5 a 5 margin of error and a population of 30000 Purposive and Snowball sampling methods nonprobability sampling will be used
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None