Ignite Creation Date:
2024-05-06 @ 7:37 PM
Last Modification Date:
2024-10-26 @ 3:10 PM
Study NCT ID:
NCT06074393
Status:
NOT_YET_RECRUITING
Last Update Posted:
2023-10-12
First Post:
2023-09-28
Brief Title:
Caregiving in Advanced PD A Tailored Support Group
Sponsor:
University of Calgary
Organization:
University of Calgary
Study Overview
Official Title:
Caregiving in Advanced Parkinsonian Disease A Tailored Support Group
Status:
NOT_YET_RECRUITING
Status Verified Date:
2023-10
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:
None
Brief Summary:
The goal of this study is to understand how support groups can help people who care for individuals with Parkinsons Disease and Related Disorders PDRD The investigators want to find answers to these questions
How do these support groups make caregivers feel
Do these support groups help caregivers cope better and improve their quality of life
Participants in this study will join support groups where they can talk to other caregivers and learn from experts These groups will meet every two weeks for four months and there will be sessions on different topics like self-care coping skills and mindfulness Caregivers will share their experiences and ask questions in these sessions
Information will be collected before and after the support group meetings using surveys These surveys will help understand how the support groups affect caregivers Things like caregiver burden coping strategies and overall well-being will be measured
The main goal is to reduce the burden on caregivers of people with PDRD and improve their quality of life It is believed that these support groups can make a positive difference and this study will help understand how they work
How do these support groups make caregivers feel
Do these support groups help caregivers cope better and improve their quality of life
Participants in this study will join support groups where they can talk to other caregivers and learn from experts These groups will meet every two weeks for four months and there will be sessions on different topics like self-care coping skills and mindfulness Caregivers will share their experiences and ask questions in these sessions
Information will be collected before and after the support group meetings using surveys These surveys will help understand how the support groups affect caregivers Things like caregiver burden coping strategies and overall well-being will be measured
The main goal is to reduce the burden on caregivers of people with PDRD and improve their quality of life It is believed that these support groups can make a positive difference and this study will help understand how they work
Detailed Description:
Background Rationale
Neurodegenerative diseases are projected to surpass cancer as the leading cause of death by 2030 Parkinsons disease prevalence in Canada was 170100000 in 20132014 and with an aging population the number of Canadians over 40 with the disease will rise by 65 by 2030 Advanced stages of Parkinsons Disease and Related Disorders PDRD result in motor disability and complex non-motor symptoms increasing demand for healthcare services Care partners face challenges such as anxiety managing treatments and uncertainty leading to negative lifestyle changes and reduced mental health
Care partners of PDRD must manage stressors that impact their health and well-being Existing support groups mainly focus on disease management and neglecting care partner challenges These pilot support groups provide an avenue for emotional and informational support addressing care partner burdens Structured meetings offer practical tools solutions and guest speakers enhancing support group content
Research Question Objectives
The study aims to establish and assess support groups tailored to PDRD care partners needs with two main objectives
Creating a supportive environment through structured meetings Evaluating support group effectiveness in enhancing coping reducing burden and improving quality of life
Methods
Study Design
The study is structured around the establishment of a supportive community for individuals caring for PDRD The primary objective is to foster connections among caregivers enabling them to exchange personal experiences and derive shared comfort from others who comprehend the challenges associated with these conditions
Participants engage in a secure and confidential environment sharing narratives and insights that contribute to their collective knowledge of effective caregiving Moreover the support group incorporates dedicated sessions led by healthcare experts encompassing various disciplines including physicians nurses psychologists social workers and spiritual advisors These specialized sessions each lasting 90 minutes occur biweekly over a 16-week period Hosted at the University of Calgarys Cumming School of Medicine in a hybrid structure by using Zoom as a method of assistance these sessions occur twice annually accentuating the recurrent and structured nature of the support group
In each week various themes will be addressed such as
Self-care and Personal Health Adaptation to changes in the living situation changing roles and navigating the system Coping skills and Resilience Emotions embracing vulnerability emotional identification factual validation counteraction problem resolution
Anticipatory grief Forgiveness and interconnectedness Mindfulness Establishing boundaries attaining tranquility and achieving closure In every session of the support group care partners are encouraged to participate by sharing their experiences as well as asking pertinent questions
Data Collection
The study employs pre- and post-participation questionnaires and measurement instruments to assess support group efficacy comprehensively using Qualtrics as a data collection tool for the surveys
Instruments include
Short Zarit Burden Interview ZBI-12 to quantify caregiving impact Brief-COPE to assess coping mechanisms Adult Carer Quality of Life Questionnaire AC-QoL to measure overall well-being
Satisfaction Survey to gather participant feedback and knowledge acquisition
Outcomes
Primary Outcomes
Care Partner Burden Assessed using ZBI-12 Coping Strategies Evaluated with Brief-COPE scale Quality of Life Scrutinized using AC-QoL scale
Secondary Outcomes
Satisfaction with Participation Caregiver Support Group Satisfaction Survey
The study addresses the increasing burden on care partners of individuals with PDRD It establishes and evaluates support groups tailored to their needs to enhance coping reduce burden and improve quality of life The study utilizes structured meetings measurement instruments and comprehensive assessments to shed light on the effects of the support groups on care partners well-being
Neurodegenerative diseases are projected to surpass cancer as the leading cause of death by 2030 Parkinsons disease prevalence in Canada was 170100000 in 20132014 and with an aging population the number of Canadians over 40 with the disease will rise by 65 by 2030 Advanced stages of Parkinsons Disease and Related Disorders PDRD result in motor disability and complex non-motor symptoms increasing demand for healthcare services Care partners face challenges such as anxiety managing treatments and uncertainty leading to negative lifestyle changes and reduced mental health
Care partners of PDRD must manage stressors that impact their health and well-being Existing support groups mainly focus on disease management and neglecting care partner challenges These pilot support groups provide an avenue for emotional and informational support addressing care partner burdens Structured meetings offer practical tools solutions and guest speakers enhancing support group content
Research Question Objectives
The study aims to establish and assess support groups tailored to PDRD care partners needs with two main objectives
Creating a supportive environment through structured meetings Evaluating support group effectiveness in enhancing coping reducing burden and improving quality of life
Methods
Study Design
The study is structured around the establishment of a supportive community for individuals caring for PDRD The primary objective is to foster connections among caregivers enabling them to exchange personal experiences and derive shared comfort from others who comprehend the challenges associated with these conditions
Participants engage in a secure and confidential environment sharing narratives and insights that contribute to their collective knowledge of effective caregiving Moreover the support group incorporates dedicated sessions led by healthcare experts encompassing various disciplines including physicians nurses psychologists social workers and spiritual advisors These specialized sessions each lasting 90 minutes occur biweekly over a 16-week period Hosted at the University of Calgarys Cumming School of Medicine in a hybrid structure by using Zoom as a method of assistance these sessions occur twice annually accentuating the recurrent and structured nature of the support group
In each week various themes will be addressed such as
Self-care and Personal Health Adaptation to changes in the living situation changing roles and navigating the system Coping skills and Resilience Emotions embracing vulnerability emotional identification factual validation counteraction problem resolution
Anticipatory grief Forgiveness and interconnectedness Mindfulness Establishing boundaries attaining tranquility and achieving closure In every session of the support group care partners are encouraged to participate by sharing their experiences as well as asking pertinent questions
Data Collection
The study employs pre- and post-participation questionnaires and measurement instruments to assess support group efficacy comprehensively using Qualtrics as a data collection tool for the surveys
Instruments include
Short Zarit Burden Interview ZBI-12 to quantify caregiving impact Brief-COPE to assess coping mechanisms Adult Carer Quality of Life Questionnaire AC-QoL to measure overall well-being
Satisfaction Survey to gather participant feedback and knowledge acquisition
Outcomes
Primary Outcomes
Care Partner Burden Assessed using ZBI-12 Coping Strategies Evaluated with Brief-COPE scale Quality of Life Scrutinized using AC-QoL scale
Secondary Outcomes
Satisfaction with Participation Caregiver Support Group Satisfaction Survey
The study addresses the increasing burden on care partners of individuals with PDRD It establishes and evaluates support groups tailored to their needs to enhance coping reduce burden and improve quality of life The study utilizes structured meetings measurement instruments and comprehensive assessments to shed light on the effects of the support groups on care partners well-being
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