TAKINGCARE - TAcKlING the Needs of Carers of People With Chronic respirAtoRy disEases
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 250
- 试验地点
- 1
- 主要终点
- Preparedness for Caregiving Scale (PCS)
研究概览
简要总结
This study aims to: i) develop an instrument that assesses the needs of informal carers of people with chronic respiratory diseases (CRD), along diseases' trajectory, and evaluate its measurement properties; ii) identify existing instruments that assess the needs of informal/family carers and their measurement properties, iii) characterize the needs of informal carers of people with CRD and iv) characterize the health literacy of informal carers of people with CRD.
The first task will be a systematic review. For the second and third tasks, people with CRD, their informal carers and health professionals will be recruited via the pulmonology services from the hospitals:Unidade Local de Saúde de Gaia/Espinho, Unidade Local de Saúde da Região de Aveiro, and Unidade Local de Saúde de Entre o Douro e Vouga. On task 2, a mixed-methods study will be conducted to characterize the needs of informal carers of people with CRD, as well as their health literacy. On task 3, an instrument that assesses the needs of informal carers of people with CRD will be developed and its measurement properties will be studied.
This study is urgently needed to provide meaningful support to this hidden workforce who provides most of the care to people with DRC contributing to guide meaningful supportive care to this population and their loved ones.
详细描述
Chronic respiratory diseases (CRD) are the 3rd leading cause of death and disability worldwide, with high burden for individuals, but also for their families and society, including health services. They are systemic, with pulmonary and extrapulmonary manisfestations, and are characterized by a progressive decline on multiple activities of daily living making this people depend on others along diseases' trajectory.
Daily, informal/family carers, who may be relatives, partners, friends or neighbours, with a significant personal relationship with an elderly person or an adult with a disabling chronic disease, are the main source of support of people with CRD. They have a multiplicity of roles in providing physical, financial, psychological/emotional, social, and spiritual support. It is assumed that informal/family carers have the appropriate level of health literacy, disease knowledge, financial security, household conditions, psychological readiness, and medical care abilities to support the person with CRD.
Although they report positive experiences (e.g., personal growth, satisfaction), there has been an acknowledgement of negative impacts (e.g., burden, difficulty in realizing personal interests/projects) and specific needs related to their roles. Nevertheless, their needs are usually unmet and rarely assessed, and they are highly neglected by the social/health system, as well as in research. Assessment of this needs is the first step to provide meaningful support to this hidden workforce who provides most of the care to people with CRD and it has been emphasised by the European Union's recommendations to support and empower informal carers. However, only two instruments have been explicitly designed to assess their needs: the Carers' Alert Thermometer and the Carer Support Needs Assessment Tool (CSNAT), but their routine use is limited, their measurement properties have been scarcely explored and only for COPD, and studies have focused on end-of-life situations.
Therefore, the primary aim of this study is to develop a new instrument to assess the needs of loved ones across CRD' trajectory. Secondary aims are to map available instruments that assess the needs of informal/family carers and their measurement properties, and characterize the needs of informal carers of people with CRD and their health literacy.
This study will be carried out at the University of Aveiro, at the Laboratory of Research and Respiratory Rehabilitation of the School of Health Sciences of the University of Aveiro, at Unidade Local de Saúde de Gaia/Espinho, at Unidade Local de Saúde da Região de Aveiro, and at Unidade Local de Saúde de Entre o Douro e Vouga, in Portugal.
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
- •People with chronic respiratory diseases (CRD):
- •18 years of age or older;
- •Diagnosed with ILD, COPD, lung cancer, severe asthma or bronchiectasis;
- •Fluent in Portuguese;
- •Identify an informal/family carer;
- •Informal carers of people with CRD:
- •18 years of age or older;
- •Fluent in Portuguese.
- •Health Professionals:
- •Fluent in Portuguese;
- •Contact with people with CRD in their clinical practice.
排除标准
- •People with CRD:
- •Signs of cognitive impairment in the Six-item Cognitive Impairment Test (6CIT) for the interviews.
- •Informal carers of people with CRD:
- •Signs of cognitive impairment in the 6CIT.
结局指标
主要结局
Preparedness for Caregiving Scale (PCS)
时间窗: Task 2 and 3 (baseline)
The PCS was developed to assess the competence/level of preparation of informal/family carers (family member or friend) of elderly people with moderate to severe cognitive or physical decline at home.The scale has 8 items, scored on a 5-point scale (from 0 - "not at all prepared" to 4 - "very well prepared"). The total score varies from 0 to 32, with a higher score corresponding to a better perception of level of preparation It has shown good measurement properties. It will be translated and culturally adapted and applied to informal carers of people with CRD.
次要结局
- Six Minute Walk Test (6MWT)(Task 2 and 3 (baseline))
- : Chronic Airways Assessment Test (CAAT)(Task 2 and 3 (baseline))
- King's Brief Interstitial Lung Disease (KBILD)(Task 2 and 3 (baseline))
- 5-level EuroQoL-5D (EQ-5D-5L)(Task 2 and 3 (baseline))
- Hospital Anxiety and Depression Scale (HADS)(Task 2 and 3 (baseline))
- Satisfaction with life scale (SWLS)(Task 2 and 3 (baseline))
- Lubben Social Network Scale - 6 items (LSNS-6)(Task 2 and 3 (baseline))
- World Health Organization Disability Assessment Schedule (WHODAS 2.0)(Task 2 and 3 (baseline))
- Zarit Burden Interview (ZBI-22)(Task 2 and 3 (baseline))
- Positive Aspects of Caregiving (PAC)(Task 2 and 3 (baseline))
- European Health Literacy Survey - 47 items (HLS-EU-Q47)(Task 2 and 3 (baseline))
- Carer Support Needs Assessment Tool (CSNAT)(Task 2 and 3 (baseline))
- Qualitative data: interviews(Task 2 and 3 (baseline))
- Social connectedness and care-related questions(Task 2 and 3 (baseline))
- Brief Physical Activity Assessment Tool (BPAAT)(Task 2 and 3 (baseline))
研究者
Alda Sofia Pires de Dias Marques
Senior Lecturer
Aveiro University