Caregiving in Advanced Parkinsonian Disease: A Tailored Support Group
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 40
- 试验地点
- 2
- 主要终点
- Changes in Care Partner Burden: Assessed using ZBI-12.
研究概览
简要总结
The goal of this study is to understand how support groups can help people who care for individuals with Parkinson's 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.
详细描述
Background & Rationale:
Neurodegenerative diseases are projected to surpass cancer as the leading cause of death by 2030. Parkinson's disease prevalence in Canada was 170/100,000 in 2013/2014, and with an aging population, the number of Canadians over 40 with the disease will rise by 65% by 2030. Advanced stages of Parkinson's 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:
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 100 Years（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Care partners of individuals with a confirmed diagnosis of Parkinsonian Syndrome.
- •Participants in the Calgary Movement Disorders Advanced Care pilot program (REB22-0545)
排除标准
- •Care partners with significant cognitive impairments that hinder participation with MoCA<10 points.
结局指标
主要结局
Changes in Care Partner Burden: Assessed using ZBI-12.
时间窗: Enrollment and at the end of the Support Group. 1 and 16 weeks.
ZBI-12 is validated as a screening tool for advanced illness. The ZBI-12 is rated on a 12 items scale, with the severity of burden using a range of responses from 0 to 4 points per item and a total score range of 0 to 48. Scoring 0-10 is considered as a no to mild burden; 10-20, a mild to moderate burden and \>20, a high burden. It measures changes in physical, emotional, social, and financial problems that can be experienced by family caregivers.
Changes in Coping Strategies: Evaluated with Brief-COPE scale.
时间窗: Enrollment and at the end of the Support Group. 1 and 16 weeks.
The Brief COPE (Coping Orientation to Problems Experienced) scale, composed of 28 items, each rated on a 4-point scale where 3 represents the highest score, exhibits a minimum value of 0 and a maximum value of 84. When interpreting Brief COPE scores, higher values are indicative of a potentially enhanced capacity to navigate stress and handle challenging situations. These elevated scores reflect a greater propensity to employ diverse coping strategies when confronted with difficulties.
Changes in Quality of Life: Scrutinized using AC-QoL scale.
时间窗: Enrollment and at the end of the Support Group. 1 and 16 weeks.
The Adult Carer Quality of Life (AC-QoL) Scale encompasses both an overall scale and eight subscales. The overall scale yields scores ranging from 0 to 120, with higher scores signifying an enhanced quality of life for caregivers. Additionally, each of the eight subscales offers scores within a potential range of 0 to 15. Higher scores on these subscales indicate an improved quality of life for caregivers in specific domains pertaining to their caregiving responsibilities. This structured assessment provides valuable insights into the well-being of caregivers across multiple dimensions of their lives.
次要结局
- Satisfaction with Participation: Caregiver Support Group Satisfaction Survey(Byweekly for 16 weeks)
研究者
Veronica Bruno
Assistant Professor. Department of Clinical Neurosciences
University of Calgary