"Family Caregiver Reflex": Family Support for Patients Followed for Systemic Sclerosis - Pilot Study Evaluating the Experience and Role of Family Caregivers in Order to Identify and Include Them in Therapeutic Educational Programs
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 50
- 试验地点
- 1
- 主要终点
- Questionnaire
研究概览
简要总结
Systemic sclerosis (SSc) is a rare, serious disease that is part of chronic inflammatory rheumatism.
It requires multidisciplinary care and a specific therapeutic patient education program.
SSc actually affects every member of the family, the patient as well as those close to him. It deeply affects each member of the family (increased fatigue, stress, social isolation, exhaustion, financial difficulties …) which gives rise to threats of vulnerability and modulates the balance of family relations.
However, there are very few studies on family SSc caregivers. We have raised the question about the experience and needs of caregivers in order to better support them.
The main purpose of this pilot study is to better understand the particularities of relatives (caregivers) of patients suffering from systemic sclerosis and will allow us to refine our knowledge about the assistance they provide for SSc patients and its impact on family caregivers :
- lived experience of the relatives (caregivers);
- physical, mental and socio-professional health of the relatives (caregiver);
- relationship between the relative (caregiver) and the patient.
The research will be carried out at Cochin Hospital, in collaboration with the French Scleroderma Association (ASF).
It will be offered to relatives of SSc patients identified by health team in the rheumatology or internal medicine department, as well as during consultations and patient education activities.
An information note and an informed consent will be given to each patient and his caregiver ; Self-questionnaires will then be offered to relatives.
They can fill them out while they are in the hospital, or at home and return the completed questionnaire.
Caregivers will be questioned about their quality of life, health, relationship with the patient and support situation.
They will also be asked for personal socio-demographic information concerning the patient.
The "caregiver reflex" project is part of the 2020-2022 mobilization and support strategy for caregivers "acting for the health of family caregivers", in which the establishment of a "caregiver reflex" among professionals health is put forward.
详细描述
Exploratory study with family caregivers of patients suffering from Systemic Sclerosis (SSc).
This research work will allow to better understand the experiences and needs of these very particular caregivers, in order to offer them specific educational support and workshops.
It should also allow healthcare teams to develop a "family caregiver reflex", especially in the context of SSc disease to identify and include PAs in PTE programs.
Primary objectives:
Identify caregivers in the SCS patient's family circle: in order to analyze their profile and assess their needs, expectations, projects and difficulties:
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Cross Sectional
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
- •Relatives caregivers of patients suffering from Systemic Scleroderma (family, friends, neighbours);
- •Be at least 18 years old;
- •Not being the patient's professional caregiver;
- •Have signed the informed consent to participate.
排除标准
- •Inability to answer questionnaires (language, cognitive disorders, etc.).
- •under curatorship or tutorship
- •with State medical care (AME)
结局指标
主要结局
Questionnaire
时间窗: Inclusion visit 1 day
Sociodemographic and medical information concerning the patient assisted Patients' sociodemographic and medical information will be collected: age, gender, family composition, family relationship with the family caregiver, length of the illness.
次要结局
- Questionnaire SF36(Inclusion visit 1 day)
- Questionnaire(Inclusion visit 1 day)