A methodological study was developed with two phases. Phase 1 aimed to develop and validate the contents to be integrated into the MOOC. Subsequently, in phase 2, a pilot study was carried out with a convenience sample, to verify the adequacy of the course to its target audience.
A set of topics considered relevant for the caregiver were selected: COVID-19 prevention measures, feeding and hydration, positioning and transfer, hygiene care, prevention of pressure injuries, prevention of falls and medication management. The content production process began with the design of a plan considering the pandemic situation and was grounded on scientific evidence. The course was divided into nine modules: I - Presentation of the course; II - COVID-19 prevention measures; III - Feeding and hydration; IV – Positioning V - Transfer; V – Hygiene care; VI - Dressing/Undressing; VII - Prevention of pressure injuries; VIII – Falls prevention; and IX - Medication.
It should be noted that part of the proposed contents had already been worked on previously and were integrated into a digital platform (http://pope.esenf.pt/intentcare), intended for informal caregivers, so they were now restructured and integrated into this course (feeding and hydration, positioning; transfer; hygiene care and medication), with the contents related to COVID-19 prevention measures, prevention of pressure injuries and falls prevention developed specifically for this MOOC.
These new contents were developed according to the recommendations of the methodology Plain Language, following the four steps: adaptation to the target population, language and style, organization, layout and design (10), using the Delphi study and nominal group techniques.
Regarding COVID-19 prevention measures, a panel of experts was invited to conduct the Delphi study. This study type, which involves a group of experts allows to formulate judgements, to evaluate and classify a set of ideas on specific issues (11). The selection of the experts followed the recommendations of Boateng and collaborators (12). The expert group included a public health doctor, six public health nurse specialists and two specialists in the area of infection prevention and control), a microbiologist and an infectious disease specialist. A total of 17 questions were formulated (Table 1) and respective answers, based on the Strategic Preparedness and Response National Plan to the Disease by New Coronavirus, by the Portuguese General-Directorate of Health, and grounded on available scientific evidence. A grid was elaborated with the detailed guidelines of the measures to be integrated into the course, and a simple language was used, without technical terms to facilitate its understanding. The document was sent to the experts, who were asked to express the relevance and clarity of each information unit by assigning each a score on the importance and applicability (from 5 being very important/clear to 1 being nothing or little important/confusing). The experts were informed that the parameters with a score of less than 4 would be eliminated or reformulated according to suggestions and comments received. A period of 3 weeks was given to submit the complete document.
Guiding questions sent to experts
1. What is COVID-19?
2. What are the symptoms of COVID-19?
3. Is it only people with symptoms who transmit the disease?
4. What is the incubation period of the disease (being the time it takes from one being infected to developing symptoms)?
5. Is there a treatment for COVID-19?
6. How is COVID-19 transmitted?
7. What is community transmission?
8. What are the prevention measures?
9. Why and when should one wash their hands?
10. What are the measures of social distancing?
11. What are the measures of respiratory etiquette?
12. What measures to take when being on public transportation?
13. What personal protection measures to take when providing care?
14. What measures to take when leaving home?
15. What measures to take with housing hygiene?
16. What surveillance and monitoring measures should one have with the family member?
17. How to express affection and care without compromising the safety of the person receiving care?
The use of appropriate terminology was carefully addressed by the experts’ panel and modifications of syntax and lexicon were potentially suggested to facilitate understanding.
In the inherent questions in the COVID-19 introduction theme, the experts considered the importance of adding arterial hypertension to the set of diseases that put the person at risk of suffering major complications of the disease.
Theoretical justifications about the incubation period and transmission of the disease were simplified. Some specifications were also considered and simpler terms were used to facilitate understanding.
The personal protection measures to be adopted when providing care, when leaving home and housing hygiene registered a lower degree of agreement and the selected recommendations were less restrictive than initially proposed. For example, it was initially suggested to change shoes when entering the house and to put on a mask before leaving the house and remove it only when entering the house. In the surveillance and follow-up measures to be carried out with the family member, the telephone contact of the National Health Service (SNS) dedicated line was introduced.
The contents related to the prevention of pressure injuries and falls were developed by the research team and validated by a focus group. This group consisted of five nurses belonging to a research center in health technologies and health services, recruited to the nominal group technique. This technique allowed, quickly, generating consensus on the relevant information to be transmitted. This work methodology followed the recommendations of McMillan and collaborators (13).
Subsequently, each module was recorded on video in a studio and content were later edited with animations to further disseminate the message. Other pedagogical resources facilitating learning were also developed for each module, namely written synthesis of the contents to be made available on a static web page, a questionnaire so that participants could validate their knowledge after viewing the videos and a support manual in portable document format.
The MOOC was set up on an open-access platform, managed by the Scientific Computing Unit of the Portuguese Foundation for Science and Technology. This platform that promotes digital development, inclusion and digital literacy, education and qualification of the working population, allows the creation of courses in MOOC format, open and accessible to all, being part of the transversal actions of the Portugal INCoDe.2030 initiative.
The course was tested through a pilot study, consisting of caregivers of people dependent on self-care activities, residing in a northern city of Portugal. Participants were recruited through convenience sampling from one caregiver association. Caregivers had to agree to participate in the study, be 18 years old or older, to have internet access at home and digital skills to deal with information technologies or, in their absence, have the support of a family member or significant other.
The caregivers attended the MOOC and were interviewed by a nurse from the aforementioned association. The nurse collected information about the caregiver's profile and his/her perception of the adequacy and relevance of the course, by applying four questionnaires, three of which were developed specifically for the present study. Also, face-to-face meetings, telephone calls and videoconferences were used by the nurse to clarify any doubts about the registration process and access to the platform.
The sociodemographic questionnaire allowed characterizing the participants regarding age, marital status, education, cohabitation, work condition, years of care, kinship and support in care.
The knowledge questionnaire was applied by a test with 20 questions to evaluate the contents of the course. The questions were focused on the signs, symptoms, and measures of transmission of SARS-CoV-2 infection, and general measures of prevention, personal protection and surveillance. They also focused on the frequency of position change, benefits of transfer, hygiene care, prevention of pressure injuries and falls, measures promoting hydration and healthy eating, attitudes towards food refusal, safe use of medicines and care regarding personal protective equipment. Each question had 4 possible answers and each correct question was scored with 1 point. The questionnaire was applied before, and two weeks after the caregiver completed the MOOC.
The questionnaire to evaluate the acceptance of the MOOC was developed according to the Technology Acceptance Model (TAM) (14). It includes 14 questions about the duration, the adequacy of the contents, the language, the sound images, the captions, their contribution to the learning of content appropriate to the condition of caregiver and interest in using. The responses were presented in a 5-point Likert ordinal scale of agreement, ranging from 1 (totally disagree) to 5 (totally agree). A section was also provided for participants to make comments and suggestions.
The FCFI (15) comprises 4 dimensions that evaluate the caregiver resources, knowledge of care, caregiver expectations and difficulties in caring tasks according to the health professional’s perspective. The knowledge relates to the degree of understanding that the caregiver has regarding the factors that can influence the patient's health condition, the environmental factors that can affect their safety, and factors that can interfere with the emotional and cognitive state. This dimension with 7 items is evaluated by a 5-point Likert ordinal scale ranging from very poor (1) to very good (5). Difficulties in caring tasks may arise from the unpredictability of the condition of the person being cared for as well as their lack of cooperation, but also from uncontrollable external factors, differences between different caregivers, heavy physical work or permanent care. It consists of 6 items that are evaluated by an ordinal scale that varies from not difficult (1) to very difficult (5). The resources pertaining to care are related to the caregiver's ability to achieve desirable care and may include self-skills and attitudes, but also the support of family and friends. This dimension has 7 items that are evaluated by an ordinal scale that varies between usually not able to make correct judgments (1) and is able to make correct judgments (3). The expectations of the caregiver refer to the degree of realism that the caregiver has in the performance of his/her role. It includes 5 items, evaluated by a nominal scale that varies between a realistic pattern (1 point) or unrealistic (0 points) pattern. The results were standardized so that each dimension had a final score ranging from 0 to 100.
The link to the forms in electronic format (Google Forms) was sent by email to each participant. The nurse through an interview completed the FCFI.
The caregivers association invited 52 caregivers to participate in the study. In the period between recruitment and the beginning of the study, 19 caregivers dropped out, due to lack of availability, the death of the person cared for, or difficulty in accessing the platform.
The characterization of the 33 caregivers who participated in the second phase of the study is shown in Table 2. The participants were aged between 37 and 78 years, with an average of 53.5 (SD = 9.44) years. Most completed upper secondary education, and only 30.3% (10) completed higher education. Also, 30.3% (10) stated that they could not account for the hours spent, since they had to be fully available to provide care. The remaining participants refer to spending between 4 to 18 hours providing daily care. The vast majority (51.5%) stated to assume the role of caregiver because they had no other alternative.
Sociodemographic data of caregivers who performed the preliminary evaluation of the MOOC
Does not work
Cohabits with family member: Yes
Support from family/friends: Yes
Dependence of the family member: Chronic disease
Sequelae of accident/sudden event
Dependency condition: gradual evolution
Quantitative data were analysed by SPSS version 28. Univariate analysis was performed through measures of central tendency and dispersion. The t-test for paired samples was applied for comparison between the median scores obtained in the knowledge test before and after the MOOC. Also, Pearson correlation was used to analyse the association between outcome variables (scale dimensions, knowledge test results and satisfaction questionnaire scores).
The study had the approval of the Ethics Committees of the involved institutions (ADHOC _1434/2020). The participants were informed of their right to withdraw from the study at any time.