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.
It comprises three tasks: task 1 will consist of a systematic review, in which the
instruments that assess the needs of informal/family carers and their measurement
properties will be identified; task 2 will be a cross-sectional study where the needs of
informal carers of people with CRD and their health literacy will be characterized,
through a mixed-methods study, integrating people with CRD, their informal carers, and
health professionals; task 3 will be the development of an instrument that assesses the
needs of informal carers of people with CRD. The items will be generated based on tasks 1
and 2 and following existing guidelines. The instrument will be pilot-tested, and the
measurement properties of the instrument will then be tested in a cross-sectional
observational study. On task 2, the Carer Support Needs Assessment Tool v3.0 and the
Preparedness for Caregiving Scale will also be translated to European Portuguese.
Adults who are diagnosed with CRD, who are fluent in Portuguese and identify an
informal/family carer will be included. If they show signs of cognitive impairment, they
will not be eligible for the interviews. Informal carers will be included in the study if
they are ≥18 years old and are fluent in Portuguese. They will be excluded if they show
signs of cognitive impairment. Health professionals will be included if they contact with
people with CRD in their clinical practice.
Sociodemographic and general clinical data will be collected. Instruments assessing
cognitive impairment, functional capacity, disease's impact, health related quality of
life, health status, level of anxiety and depression, satisfaction with life, social
network, functionality, burden, positive aspects of caregiving, preparedness for
caregiving, health literacy and informal carers' needs, as well as questions regarding
care, will be applied. Interviews will be conducted.
Sample size will be determined by the saturation of qualitative data in task 2. For the
assessment of health literacy of informal carers of people with CRD, it is not possible
to determine the sample number. The maximum number of informal carers will be recruited
and estimates a posteriori will be made. For task 3, following the Consensus-based
Standards guidelines for the Selection of health status Measurement Instruments (COSMIN),
a minimum of 100 participants will be required.
Data analysis will be conducted using the Statistical Package for the Social Sciences
(SPSS) software. For the organization and visualization/analysis of qualitative data, the
NVivo program will be used. Descriptive statistics, comparison of distributions, and
associations. Validity and reliability will be assessed. The analysis of qualitative data
will be divided into content analysis and thematic analysis.