Educational Support Group Program for Carepartners of Bilingual and Spanish-speaking Persons With Progressive Forms of Aphasia and for Persons With Progressive Forms of Aphasia
试验速览
- 阶段
- 1 期
- 状态
- 招募中
- 入组人数
- 120
- 试验地点
- 1
- 主要终点
- Treatment/Acceptability Survey
研究概览
简要总结
The current study aims to examine the benefits of an education/support group program for individuals with progressive aphasia (caused by various etiologies, diagnoses) and their carepartners. The current study utilizes pre-, post-treatment, and follow-up assessments to measure effects of a psychoeducational support group and an implementation/communication skills training phase on measures of psychosocial function, communicative effectiveness and speech/language function. Analysis of study-specific surveys and semi-structured interviews will provide qualitative data regarding outcomes. Before beginning the education and support group, focus groups will be run in order to set priorities for the themes to be included in the education program. Participants will join via tele-based means if preferred and these participants may reside in the United States, or internationally including Mexico and Spain.
详细描述
Two educational/support group routes will be offered:
- Progressive aphasia (PA) educational/support group or
- Caregiver educational support group with an implementation phase (including their partner with PA).
The caregiver educational support group path will be delivered in two phases, whereas the PA educational support group path will only consist of the first phase. The first phase of the caregiver educational support group will focus on the educational support group and the second phase will consist of implementation and practice of strategies with feedback provided by the clinician.
The educational/support groups (Routes 1 and 2) will include opportunities for discussion of issues related to language-led dementia or progressive aphasia (e.g., coping with changes in cognition and language, use of strategies for effective communication) and education regarding the disorder provided by relevant experts (e.g., speech-language pathologists, licensed professional counselors), separately for carepartners and individuals with progressive aphasia.
The implementation phase (Route 2, only) will allow for practice of strategies and skills learned in the first phase.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Single Group
- 主要目的
- Treatment
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •All participants must:
- •speak Spanish and/or English (although participants may speak other languages in addition to Spanish and/or English)
- •identify as Hispanic and/or Latinx,
- •or their spouse/family member with PA identifies as Hispanic and/or Latinx
- •see and hear well enough to participate
- •have access to a computer or mobile device with video capability
- •have an internet connection
- •Additional inclusion criteria for PA/ language-led dementia support group participants:
- •Individuals with PA:
- •Has a diagnosis of PA, or language-led dementia, and aphasia is one of the primary causes of difficulty with activities of daily living
- •Aware of language difficulties and willing to discuss them
- •Able to actively engage in group discussion and complete activities with minimal support
- •Able to regularly attend meetings
- •Willing to follow the rules of the support group for interacting with others respectfully
- •Additional inclusion criteria for care partner support group plus implementation phase participants:
- •Individuals with PA:
- •Diagnosis of aphasia or dementia that is progressive in nature, and aphasia is one of the primary causes of difficulty with activities of daily living
- •Have some ability to communicate and understand communication in order to participate in training sessions
- •Are functionally able to engage in training sessions (e.g., able to maintain some attention, minimal challenging behavior that would cause disruption)
- •Have a care partner who also consents to participating in the project
- •Care partners:
- •Self-identification as a caregiver of an individual with a diagnosis of PA or language-led dementia
- •Willing to discuss caregiving for individuals with PA/ language-led dementia
- •Able to regularly attend meetings
- •Willing to follow the rules of the support group for interacting with others respectfully
排除标准
- •Beyond the inclusion criteria included above, no additional exclusion criteria apply
研究组 & 干预措施
Treatment Condition
Support group meetings and strategy practice
干预措施: Psychosocial educational, support group and implementation of strategies (Behavioral)
结局指标
主要结局
Treatment/Acceptability Survey
时间窗: Baseline, Immediately following treatment, Follow-up at 3-months post-treatment
In-house Acceptability and Perception of Change Survey
次要结局
- Acculturation Rating Scale for Mexican Americans(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Acceptability Measure(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- % participants who complete intervention, % sessions completed(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- % completion of homework(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Retention(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Aphasia Impact Questionnaire(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Mini-Mental State Exam(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Quick Aphasia Battery(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Stroke and Aphasia Quality of Life Scale- 39(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Progressive Aphasia Severity Scale (PASS)(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- The Neuropsychiatric Inventory(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Clinical Dementia Rating Scale (CDR)(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Quality of the Caregiver Patient Relationship (QCPR)(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Dementia Quality of Life(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Geriatric Depression Scale(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Dementia Knowledge Assessment Scale(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Center for Epidemiologic Studies Depression Scale(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Cuestionario de Salud 36-Item Short Form Survey Instrument(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- General Anxiety Disorder-7(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- The Duke University Religion Index(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Familism Scale(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Adult Carer Quality of Life Questionnaire(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Brief COPE(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Brief Assessment Scale for Caregivers(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Zarit Burden Interview(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Perceived Stress Scale(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Devereux Adult Resilience Scale(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
- Dementia Management Strategies Scale (Tan et al., 2013)(Baseline, Immediately following treatment, Follow-up at 3-months post-treatment)
研究者
Stephanie Grasso
Assistant Professor
University of Texas at Austin