Abstract
Background:
In Spain, there are between 300,000 and 370,000 people with palliative care needs, and it is believed that fewer than 50% can access them. The current challenge is to combat inequities in access to palliative care resources in the rural environment through training, greater provision of material and human resources, and the involvement of health system managers.
Main objective:
To determine the effectiveness of an educational community intervention on knowledge of care for nonformal caregivers in a rural area.
Design:
A quasi-experimental pretest–posttest study with a control group will be conducted in Isso’s primary care setting (Albacete).
Methods and analysis:
The sample calculation was performed with the GRANMO program (version 8.0, 2024) with 80 caregivers. The dependent variables will be caregiver support, quality of life, and knowledge of palliative care. The IBM SPSS Statistics version 28 program will be used for statistical analysis. Instruments used were the abbreviated Zarit scale, EuroQol 5D, Goldberg, and PaCKs.
Discussion:
Improving the overload in care of the main caregiver of people with palliative care, since it negatively affects health and improves the well-being of informal caregivers.
Conclusion:
If schools for caregivers were implemented in other health centers or clinics accessible to the population, the empowerment of these people could be improved by reducing costs and enhancing experiences in care.
Ethics:
The protocol was approved by the social research ethics committee of the University of Castilla-la Mancha with reference number CEIS-2024-21094 and by the drug research ethics committee of the Gerencia de Atención Integrada de Albacete with code No. 2024-003.
Keywords
Introduction
Owing to scientific advancements and improvements in life expectancy, chronic disease and palliative needs are increasing. 1 All this, together with the progressive aging of the population, compromises the economy and health systems, becoming a threat and a new challenge in emerging health. 2 Given this, it is necessary to set up multidisciplinary teams and figures such as case manager nurses or advanced practice nurses, 3 who, together with primary care teams, can control the enormous economic cost involved. In addition, they can provide follow-up care and control of patients with palliative needs. 4
People with palliative care usually live in the community and want to be at home with their relatives and neighbors in their neighborhood. 5 Home care decreases the number of admissions and increases the quality of care and patient satisfaction. 6 In addition, the latest trends are aimed at preventing complications and increasing people’s autonomy.7,8
On occasion, family members and main caregivers are not able to take care of their family members, presenting physical and emotional overload, 9 without being able to cover their specific and exclusive needs. One of the main difficulties faced by informal caregivers is the lack of knowledge about the disease and its management. Studies have shown that in cases where patients and their families manage to establish better communication with the palliative care or primary care team, the bond with health professionals is strengthened, doubts about the disease, its prognosis, and evolution are clarified, and a greater sense of control and security in the care process is generated.3,4,9 We can identify some characteristics that influence caregiver health through the use of rating scales, such as the Zarit scale assesses the burden of the main caregiver of dependent people; in the primary care setting, the original scale with 22 items does not allow an operational assessment of the time necessary to complete it correctly. 10 There are modified scales that assess the best behavior of caregivers of dependent people cared for in primary care, such as the abbreviated Zarit scale, which allows only seven items to assess the caregiver’s burden, needs, and planning of home visits or greater social and health support for these caregivers. 11
Currently, in Spain, palliative care strategies are integrated into the national health system. 12 They aim to improve the quality of life of people with advanced or terminal illnesses and their families. In addition, multidisciplinary teams are available to care for patients and their families. In rural areas, care is provided by the community health care team, with a hospital referral center for palliative care.
Some of the principles of palliative care included in the National Palliative Care Plan in Spain include offering a support system to help patients live as actively as possible in the face of death and providing a support system to help patients’ families adapt to illness and grief. All this is presented as its main mission to promote the comprehensive and coordinated response of the health system to their needs and respect their values and autonomy. 13
To meet these needs, the existing resources in our environment and types of community interventions (music therapy, laughter therapy, volunteering, etc.) for people with palliative needs allow us to accompany these individuals and their families during the disease process. 14 To empower patients and families and adapt to the current healthcare model, in which people are more responsible for their health and are more informed, some interventions, such as caregiver schools, are proposed. Greater ability and social transformation can be achieved through training and the transmission of experiences with disease and care. Self-care and responsibility for health should be promoted through the leadership of health professionals (due to their indisputable training and work experience). 15 The main objective of the study is “to determine the effectiveness of educational community intervention for the care and resources of people with palliative needs.”
This project has the potential to generate a significant impact on the community by promoting the creation of support networks and strengthening collective commitment, fundamental aspects for social cohesion and collaborative care. In the context of palliative care, informal caregivers—mostly family members without formal health training—assume a considerable burden both physically and emotionally, making them a vulnerable population with specific needs that are often neglected. The literature provides evidence that structured support for these caregivers can reduce overload, improve their psychological well-being, and optimize the quality of care provided.3,6,9
By providing up-to-date knowledge, coping strategies, and practical tools, the project not only strengthens caregivers’ competencies but also positively impacts patients and their families. This knowledge transfer translates into more humanized, continuous, and person-centered care, which is a fundamental pillar in contemporary models of palliative care. Taken together, these actions contribute substantially to improving the quality of palliative care in the region, fostering a comprehensive community health approach.2 –4,12
Methods
Design
This is a quasi-experimental pretest-posttest study developed in the primary care setting.
Scope of the study
The reference population is the main caregiver of people with palliative needs in the population of Isso; if the sample is not complete, there will be a population of Hellín.
Inclusion and exclusion criteria
The inclusion criteria for caregivers were as follows:
Caregivers of people with palliative needs for more than 6 months.
Accepting participation in the study by completing the informed consent form.
Commit to attending the training offered in person or in streaming.
Conserved cognitive state of the caregiver.
The exclusion criterion was as follows:
Professional caregiver.
Size and sampling
The sample size was determined based on the study by Ortiz-Mallasén et al., 16 which reported an improvement of 2.73 points in perceived social support following an intervention among nonprofessional caregivers in primary care settings. This value was used as a reference for estimating the expected effect size.
The sample size calculation was performed with GRANMO software (v 7.12 April 2012) to estimate the mean differences concerning a reference value. Therefore, assuming a two-tailed test, an alpha risk of 0.05, a statistical power of 95% (beta risk of 0.05), and an effect size of 0.396 (based on the expected mean difference and standard deviation), the required minimum sample size was estimated to be 71 participants.
This approach ensures adequate statistical power to detect clinically meaningful differences, which is consistent with previous literature and standard methodological practices.
Instruments and measurements
The independent variables will be the number of participants, age, sex, marital status, children, educational level, tobacco use, previous pathologies, drug use, years caring for the family member, social support, and dependents. The dependent variables will be caregiver support, quality of life, and knowledge of palliative care.
Sociodemographic variables questionnaire: An ad hoc questionnaire (own elaboration) will be used in which the sociodemographic variables of the main caregivers will be collected.
The validated instruments used to mediate some aspects and knowledge of the caregivers are as follows:
The abbreviated Zarit scale includes questions 2, 3, 6, 910, 17, and 22 of the Zarit scale, with the cutoff point set at 17; this scale is a great tool for detecting caregiver overload in primary care, with a sensitivity of 100%. 11
EuroQol-5D quality of life scale: available in Spanish, Basque, and Catalan. To check the health status of people, three levels are measured. The first measures severity (without problems, with some problems, and with serious problems) by dimension (mobility, personal care, habitual activities, pain and discomfort, anxiety, and depression). The second applies a more general visual analog scale of evaluation (0 is the worst imaginable state of health, and 100 is the best imaginable state of health). A third element of the EQ-5D is the index of social values obtained for each state of health generated by the instrument (1 best state of health and 0 deaths). It is an instrument that takes approximately two or three minutes and is easy to complete, is sensitive to changes in health, and helps individuals make better health decisions. 17
The palliative care knowledge scale (PaCKS) 18 consists of 13 items that assess a series of facts and principles related to palliative care. Individuals can understand the differences in their knowledge of palliative care in the general population. The number of correct answers was recorded, with the best knowledge of palliative care being those with the highest score.
The Goldberg Anxiety Scale: scale validated in Spanish by Montón et al. 19 It has two subscales: one for the detection of anxiety (questions from 1 to 9) and the other for the detection of depression (10 to 18). Each affirmative answer is given a value of 1 point, and the negative answers are given a value of 0. Anxiety was considered when there were two or more affirmative answers on the subscale, and depression was considered when there were two or more affirmative answers on the subscale.
Data analysis
To perform the statistical analysis, the IBM SPSS Statistics version 28 program will be used with the license of the University of Castilla-La Mancha (UCLM). The qualitative variables will be measured as counts and percentages. The quantitative variables are denoted as arithmetic means (m) and standard deviations (SDs).
An inferential analysis will be carried out to explore the relationships between the independent and dependent variables:
For qualitative variables, the proportions of categorical variables were compared via the chi-square test, and when any frequency was ⩽5, Fisher’s exact test was used.
For the quantitative variables, first, the goodness of fit to a normal distribution will be determined (by means of the Kolmogorov–Smirnov test since the expected sample size is greater than 50 subjects), and the homogeneity of the variances (using Levene’s test) will be verified: If the assumptions of normality and homogeneity are met, parametric tests (e.g., Student’s t test) will be used. If assumptions are violated, nonparametric alternatives (e.g., the Mann–Whitney U test or Wilcoxon signed-rank test) will be applied.
Correlation analyses will be conducted via Pearson’s correlation coefficient (for normally distributed variables) or Spearman’s rank correlation coefficient (otherwise), depending on the data distribution.
In addition, to evaluate repeated measurements across different time points, the paired samples Student’s t test will be used for normally distributed data, and the Wilcoxon test will be used for non-normally distributed data.
To identify factors independently associated with caregivers’ knowledge and burden levels, multivariate logistic regression models were constructed. Variables with p ⩾ 0.15 in the bivariate analysis will be sequentially excluded via the Wald statistic to refine the model.
To control potential confounding variables, variables with theoretical or empirical relevance are included in the model regardless of their initial significance level in the univariate analysis.
If multiple comparisons are made within the same family of hypotheses, corrections for type I errors, such as the Bonferroni method, will be applied where appropriate.
All the statistical tests will be two-tailed, and a p-value <0.05 will be considered statistically significant.
The data are structured as follows:
Tables summarize descriptive statistics, group comparisons, and regression model results.
Figures (e.g., bar charts or line graphs) will be used to visualize key findings, especially changes over time or differences between groups.
Ethical considerations
This study follows the general principles of the Declaration of Helsinki. The project will be subject to good clinical practice standards and was approved by the social research ethics committee of the University of Castilla-la Mancha with reference number CEIS-2024-21094 and by the drug research ethics committee of the Gerencia de Atención Integrada de Albacete with code No. 2024-003. All participants signed written informed consent before starting the study.
The questionnaires and consent forms will be safeguarded by the doctoral student. Each participant will be identified by an assigned number, ensuring that names are coded to maintain anonymity. This coding allows for the analysis of the results in Excel without revealing the identity of the caregivers.
Procedure
After the approval of this project by the Ethics Committee of Albacete, a notebook will be created that will include the instruments mentioned above to assess the people enrolled in the caregiver school. The Nursing Directorate of Integrated Care Management (GAI) of Hellín, the third sector involved in the Hellín Health Board, and the Palliative Care Unit of the GAI Hellín, will be contacted to request collaboration and dissemination. Being able to offer this information, associations or entities that can help people with palliative needs so that we can prescribe community resources seeking networked support to combat health inequities.
Next, they will contact Isso’s office and request permission to work with the caregiver’s school. Once the informed consent form (Supplemental Material 1) has been provided, the questionnaire will be distributed to obtain responses from the participants.
Upon completing the questionnaire, participants who wish to do so will be informed that an educational community intervention will be carried out to improve results on knowledge and resources related to palliative care, so they will be provided with the researcher’s email. If they are interested in participating, they are invited to contact the research team by email. There is also the possibility of completing the questionnaire in person at Isso’s office. All interested parties are summoned by mail and by telephone at Isso’s office (Hellín, Albacete) so that the information reaches people with computer means and those who do not have access to them or knowledge.
They will be given the data collection notebook to assess knowledge, quality of life, caregiver overload, and possible anxiety or depression on the first day before the first session, after the last session, and 2 months after the end of the educational intervention. In the same way, they will be passed to the caregivers who are part of the control group.
The intervention will consist of five sessions between 1–2 h with a week of separation between them in the municipal library of Isso.20,21
In the first session, “basic care at home,” essential care, such as nutrition, skincare, and medication administration, will be taught, highlighting dysphagia and respiratory rehabilitation, facilitated by nurses and a physiotherapist. In the second session, “Emotional workshop (coping with stress and emotional management),” the management of stress and emotions in patient care will be addressed, emphasizing the overload of the caregiver, guided by a clinical psychologist. In the third session, “complementary therapies,” nonpharmacological techniques to alleviate symptoms such as pain and anxiety, such as acupressure and massage, will be presented by a nurse expert in Chinese medicine. In the fourth session, “Benefits and social support, community resources,” two social workers explain resources and legislation on available aid, establishing supportive relationships with caregivers. In the fifth session, “Experiences in complex chronic care and pediatric and adult palliative care,” professionals shared experiences with palliative care and community resources.
All workshops will be recorded and streamed via Google Teams to ensure accessibility for all caregivers, including those who are unable to attend due to health or work-related reasons. In addition, the recordings will be available for those who wish to review concepts or clarify any questions that may arise throughout the caregiving process.
At the end of each session, the school for caregivers will organize a community meeting around a café, where participants will have the opportunity to share experiences related to care, discuss the knowledge acquired, and promote a collective commitment. This space seeks to promote the creation of support networks among the residents of the community, facilitating mutual knowledge, support, and collaboration in the field of care.
Owing to the privilege of having an interdisciplinary primary care team, which ensures continuity of care and long-term follow-up, workshops and community training have a significant impact by allowing us to understand families, their resources, and challenges, and adapt better to their needs. Palliative care is shared by the primary care team, which is involved with the families from birth to death, enabling them to address the situation optimally. This approach provides crucial support to caregivers, who are often family members, accompanying their loved ones until their final breath and requiring reinforcement and assistance throughout this process.
The data collection process is summarized in Figure 1.
Data collection flowchart.
Results
The implementation of this project will help identify the level of caregiver burden among primary informal caregivers in rural areas. It also assesses their self-perception of health, as well as various factors that may affect their well-being, such as anxiety and depression. In addition, this project is expected to contribute significantly to strengthening the knowledge and skills of the caregivers who are participating in the caregivers’ Isso School. Caregivers will be able to improve their skills in basic home care, emotional management, and the use of complementary therapies, as well as acquire broader knowledge of community resources and available social benefits. In addition, a decrease in the burden perceived by caregivers is expected, as well as an improvement in their quality of life and a possible positive impact on anxiety and depression associated with the caregiving role.
Likewise, the project will seek to promote greater community cohesion through meetings organized after each session, promoting support networks among participants and strengthening relationships between neighbors who share similar experiences. At a global level, this comprehensive approach to training and support for caregivers is expected to translate into improvements in the care offered to people with palliative needs and greater use of the resources available in the community, maximizing the well-being of patients and their families. Finally, the evaluation of the results in the short and medium terms will provide relevant data on the effectiveness of the intervention, which can be used to create similar programs in other locations or to adjust future editions of the program.
Through training workshops, we aim to shift the current biomedical perspective of care, which is often focused on alleviating symptoms and complications for individuals with palliative care needs at home, without adequately anticipating changes and potential incidents that may arise in the home environment. The goal is to move toward a proactive model where the family, previously trained, can identify changes in the patient’s condition alongside the primary care team, know how to manage or alleviate symptoms, share caregiving responsibilities, and face the end-of-life process with greater preparedness, avoiding isolation, fear, and loneliness.
In addition, this project has the potential to generate a significant impact in the community, promoting support networks and a collective commitment that reinforces social cohesion and mutual support. By facilitating access to knowledge and practical tools, not only do caregivers benefit, but also patients and their families, helping to improve the quality of palliative care in the region.
Limitations and strengths
This research project has several limitations, such as the possible refusal to participate by the families/nonprofessional caregivers of people with palliative care in Isso (Albacete). Those most psychologically affected are likely not willing to participate. To do this, they will try to capture family members, trying to show the possible benefits of the intervention. A replacement rate of 10% of the possible losses is calculated.
There is also the possibility that some people do not know how to fill out the form. For this purpose, the information to be collected in the data collection notebook will be heteroadministered by the research team, who will provide online and paper questionnaires.
The time needed to attend workshops can be a problem for caregivers because of limitations in the care of dependents. For this purpose, the workshops will be recorded and shared with those who cannot attend any session.
Implications for the future
Nursing Implications for the Future of a Palliative Caregiver School in Rural Areas: The establishment of a palliative caregiver school in rural areas will have a positive effect on various aspects of care and quality of life. From a nursing perspective, the main implications include the following:
Reduction of anxiety and depression: Training in stress management and self-care helps caregivers reduce anxiety and depression, improving their emotional well-being.
Improvement in quality of life: By enhancing caregiver training, more adequate and empathetic care can be provided, benefiting both caregivers and patients.
Cost reduction: By training caregivers to manage care at home, the need for hospitalizations can be reduced, lowering healthcare system costs.
Support networks: Schools encourage the creation of support networks among caregivers, reducing social isolation and strengthening the sense of community.
Social involvement in palliative care: Awareness through the school promotes greater community collaboration and social support in palliative care.
In summary, future research could provide crucial evidence on the effectiveness of caregiver schools, helping refine the model and broaden its scope to improve palliative care in rural areas.
Conclusion
The implementation of this project is vital for addressing the needs of caregivers of people with palliative requirements, who play an essential role in the care and well-being of these patients. Through a comprehensive approach that combines training in basic care, emotional management, complementary therapies, and access to community resources, it seeks not only to improve the skills of caregivers but also to strengthen their quality of life and reduce the degree of physical and emotional overload associated with their work.
Carrying out this project is not only necessary but also strategic to strengthen the community fabric, optimize local resources, and respond effectively to the demands of a sector of the population that often faces significant challenges with limited resources. This model could serve as a reference for similar initiatives in other settings, generating a positive and sustainable change in the approach to palliative care from a community perspective.
Supplemental Material
sj-docx-1-pcr-10.1177_26323524251349836 – Supplemental material for Educational community intervention with nonformal caregivers in a rural population to improve knowledge and resources related to palliative care: Study protocol
Supplemental material, sj-docx-1-pcr-10.1177_26323524251349836 for Educational community intervention with nonformal caregivers in a rural population to improve knowledge and resources related to palliative care: Study protocol by Antonia Vélez-López, Juan Manuel Carmona-Torres, Ángel López-González, José Alberto Laredo-Aguilera, Esperanza Barroso-Corroto and Joseba Rabanales-Sotos in Palliative Care and Social Practice
Footnotes
ORCID iDs
Ethical considerations
The project will be subject to the rules of good clinical practice. The proposed research respects the fundamental principles of the Declaration of Helsinki, of the Council of Europe on Human Rights and Biomedicine (Law 14/2007), the Universal Declaration of UNESCO, of the genome and human rights, and of the Council of Oviedo on Human Rights and Biomedicine. All the data will be treated confidentially following Organic Law 3/2018 of December 5, which is based on the Protection of Personal Data and the guarantee of digital rights. The members of the investigation team signed a confidentiality document. An information sheet and informed consent will be provided to the subjects under study. All research participants were required to read the information sheet in the questionnaire and provide informed consent for their participation. The project is subject to the rules of good clinical practice and was approved by the ethics committee in social research of the University of Castilla-la Mancha with reference number CEIS-2024-21094 and by the ethics committee of research with medicines of Albacete Integrated Care Management with code No. 2024-003.
Author contributions
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The budget will be assumed by the Multidisciplinary Care Research Group (IMCU) (https://www.uclm.es/groups/imcu) and Group of Preventive Activities at the University of Sciences of Health (GAP-CS).
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data availability statement
Not applicable.
Supplemental material
Supplemental material for this article is available online.
References
Supplementary Material
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