Understanding the Lived Experience and Bereavement of Caregivers of People With Alzheimer's Disease
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 66
- 主要终点
- Occupational Balance Questionnaire
研究概览
简要总结
The main objective of this study is to explore the lived experience of caregivers and family members of people with Alzheimer's disease (AD), from the beginning of caregiving through the bereavement process following the patient's death. Using a mixed-methods design, qualitative data will be collected through in-depth interviews and combined with quantitative data obtained from standardized scales. The results will aim to determine whether prolonged caregiving significantly affects the caregiver's or family member's personal, emotional, and occupational well-being, as well as whether it leads to a reorganization of activities of daily living (ADL), an increased perception of burden, and/or a decreased quality of life. The study will also examine the presence of positive adaptation experiences.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Cross Sectional
入排标准
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Inclusion criteria for Group 1: relatives of people diagnosed with AD by a neurologist or geriatrician, who have suffered the loss of a relative with AD; who have lived with and/or cared for the person with AD until the end of their life; who agree to participate voluntarily in the project and who have signed the informed consent form.
- •Inclusion criteria for Group 2: relatives of people diagnosed with AD by a neurologist or geriatrician; who live with and/or care for the person with AD; who attend the Day Centre and who agree to participate voluntarily in the project and have signed the informed consent form.
- •Inclusion criteria for Group 3: relatives of people diagnosed with AD by a neurologist or geriatrician; who have their relative institutionalised in a nursing home and who agree to participate voluntarily in the project and have signed the informed consent form.
排除标准
- •Those who have not lived with or cared for relatives with AD and who do not agree to participate in the study will be excluded from the project.
结局指标
主要结局
Occupational Balance Questionnaire
时间窗: baseline
It is an assessment tool designed to measure occupational balance, understood as people's perception of the appropriate distribution of their time and energy in meaningful activities. This questionnaire explores aspects related to satisfaction and management of daily occupations, considering both the quantity and quality of the activities performed. It has proven useful in clinical and research contexts to identify occupational imbalances that can affect health and well-being. The original version was developed in Sweden and has been adapted to various languages and cultures, maintaining its validity and reliability.
Zarit Burden Interview, ZBI
时间窗: baseline
is a tool designed to assess the level of perceived burden experienced by informal carers of dependent persons. It consists of 22 items that explore emotional, social and physical aspects related to caregiving, allowing the impact of the carer role on their quality of life to be identified. Each item is scored on a Likert scale, with higher scores indicating greater burden.
Role Checklist
时间窗: baseline
It is an instrument based on the Human Occupation Model (HOM) designed to assess the occupational roles that a person performs throughout their life. It allows for the identification of current, past, and future roles, as well as the subjective value assigned to each one. This instrument is useful for understanding how occupational roles contribute to a sense of identity, the organisation of daily life and overall well-being, facilitating the planning of client-centred interventions.
Short Form-36 Health Survey
时间窗: baseline
It is a widely used tool for measuring health-related quality of life. It assesses eight dimensions: physical functioning, physical role, bodily pain, general health, vitality, social functioning, emotional role, and mental health. It is a generic instrument, applicable to diverse populations and useful in both research and practice, providing a broad profile of people's health status.
次要结局
未报告次要终点
研究者
Sara Garcia Bravo
PhD Physiotherapist
Universidad Rey Juan Carlos