Impact of the Pandemic on Dementia Care and Caregivers: A Qualitative Study.

Physical distancing measures to limit contagion in the COVID-19 pandemic made it difficult to care for older persons with dementia. Non-essential home visits were prevented and family caregivers took over most of their care. The aim of our study was to describe the lived experience of peoples living with dementia caregivers during the pandemic regarding the care provided and the person cared for. A qualitative phenomenological design was used. Participants were recruited using purposeful sampling. Informants were selected from primary healthcare centers, day centers, and a community mental health unit. The study participants comprised 21 caregivers. Semi-structured in-depth interviews by telephone were used, and field notes were collected from the researchers. A thematic analysis was conducted. The criteria used to control trustworthiness were credibility, transferability, dependability, and confirmability. Three main themes and six related sub-themes were identified: (1) care for the person with dementia during the pandemic, including lockdown, associated with difficulties in coping with restrictions, deterioration in health, and the impact of the closure of health and social resources; (2) health and social care provided to people with dementia after the disruptions and the care received from primary care prior to hospital or residential admission; and (3) the caregiver's perspective on the effects of the psycho-emotional impact, and coping strategies adopted in caring. Interventions for people with dementia should be planned in order to prevent the worsening of their health and cognitive status, while also developing programs to prevent stress and alleviate caregiver burden in case of health crises.

The use of social network analysis in social support and care: a systematic scoping review protocol.

BACKGROUND: In recent decades, the literature on Social Network Analysis and health has experienced a significant increase. Disease transmission, health behavior, organizational networks, social capital, and social support are among the different health areas where Social Network Analysis has been applied. The current epidemiological trend is characterized by a progressive increase in the population's ageing and the incidence of long-term conditions. Thus, it seems relevant to highlight the importance of social support and care systems to guarantee the coverage of health and social needs within the context of acute illness, chronic disease, and disability for patients and their carers. Thus, the main aim is to identify, categorize, summarize, synthesize, and map existing knowledge, literature, and evidence about the use of Social Network Analysis to study social support and care in the context of illness and disability. METHODS: This scoping review will be conducted following Arksey and O'Malley's framework with adaptations from Levac et al. and Joanna Briggs Institute's methodological guidance for conducting scoping reviews. We will search the following databases (from January 2000 onwards): PubMed, MEDLINE, Web of Science Core Collection, SCOPUS, CINAHL, PsycINFO, Cochrane Database of Systematic Reviews, PROSPERO, and DARE. Complementary searches will be conducted in selected relevant journals. Only articles related to social support or care in patients or caregivers in the context of acute illnesses, disabilities or long-term conditions will be considered eligible for inclusion. Two reviewers will screen all the citations, full-text articles, and abstract the data independently. A narrative synthesis will be provided with information presented in the main text and tables. DISCUSSION: The knowledge about the scientific evidence available in the literature, the methodological characteristics of the studies identified based on Social Network Analysis, and its main contributions will highlight the importance of health-related research's social and relational dimensions. These results will shed light on the importance of the structure and composition of social networks to provide social support and care and their impact on other health outcomes. It is anticipated that results may guide future research on network-based interventions that might be considered drivers to provide further knowledge in social support and care from a relational approach at the individual and community levels. TRIAL REGISTRATION: Open Science Framework https://osf.io/dqkb5 .

Comparison between attention and experiences of chronic complex patients: A multicentric study.

The aim of this research is to explore and analyse the functional status and experiences of complex patients located at levels 3-4 of the risk pyramid of the chronic care model in primary care, within the hospital system of two regions in Spain. The design was a mixed design (COREQ). The participants were enrolled in programs for chronic complex patients and their caregivers. Sociodemographic variables were gathered, together with the following measures: the Barthel test, the Mini mental test, the Zarit questionnaire, the IEXPAC scale and the Braden scale. A semi-structured interview was conducted individually with patients in order to explore their experiences and narrative on the process of their illness and the support they had received. The sample comprised 206 chronic pluripathological patients, of whom 103 were from Cantabria and a further 103 were from Mallorca. The patient profile in both regions was very similar. There was an equal distribution across both gender and the patients were over 78 years old. They all had a basic (primary) education, an average income and required moderate physical dependence, receiving assistance primarily from their children. The qualitative analysis highlighted patients' awareness of the illness and their concern for the future, noting that, overall, patients were satisfied with the care provided by their caregivers and the health system. We can conclude that is the first multicentric study of these characteristics conducted in Spain, despite it being the country with the second largest ageing population in the world. It is important to test new organisational models with differentiating areas of advanced clinical practice in primary care, whereby both patients and their caregivers can be co-responsible within the care process.

Changes in Caregiver Personal Support Networks: Gender Differences and Effects on Health (CUIDAR-SE Study).

Technological changes have led to important advances in medical diagnoses and treatments that prolong the informal care process. Support from the personal network of informal caregivers is an undervalued resource and the changes that have occurred over time are unknown. The aim of this study was to analyze the changes in personal network support among informal caregivers and to examine the effect of these changes on self-perceived caregiver health, with a focus on differences between men and women and caregivers with high and low levels of burden We also investigated caregiver perceptions and explanations of changes to their support network (losses and additions and no change). Using a mixed-methods approach, data were obtained from 32 caregivers that were intentionally selected in Spain, who were interviewed twice with a one-year interval. In the quantitative phase, personal networks analysis was performed with Egonet software, which obtained data on the composition and functional content in social support from 1600 personal relationships (25 alters for each ego in the two waves). In the qualitative phase, semi-structured interviews were conducted in the two waves with a guide in order to explore the changes in informal support resources over time. The selected men with high levels of burden pointed out a loss of network support with more discouraging reports compared with the low-burden male caregivers. Furthermore, the selected women with low burden levels mentioned losses too; however, their reports were more positive. Women reported improved health, especially those with low burden scores in the first wave and those who did not lose support. Caregivers with a high initial burden and who lost support reported worse health, particularly men and women with a strong sense of duty toward care. Social support from personal networks is important for caregiver health and its effects are influenced by gender roles. Our findings could help by improving the relational and social capital of informal caregivers and adapting them to the new needs of formal home care systems.

Personal Support Networks of Young People with Mild Intellectual Disabilities during the Transition to Adult Life.

Social support networks occupy a priority position requiring attention in the processes of social inclusion of people with intellectual disabilities, during their transition to adult life. The objective of the study was to analyze social support from a relational approach through Personal Network Analysis. A total of 41 young people with mild intellectual disabilities participated in the study, in two groups differentiated according to their educational stage, either compulsory secondary education or post-compulsory training. Descriptive and comparative results are presented based on the variables of structure, composition, and functional content in the social support of their personal networks. The results show that both groups have restricted personal networks, made up of members of the family and the educational environment who constitute the main providers of support. When moving towards adult life, the change in social contacts in other educational, geographical, and relational settings may mean a change in the provision of support received in previous life stages. Developing social and educational actions to support these people in the development and maintenance of social relationships is essential to their access to support resources that will affect their social inclusion.

Long-Term Care Facilities and Nursing Homes during the First Wave of the COVID-19 Pandemic: A Scoping Review of the Perspectives of Professionals, Families and Residents.

The COVID-19 pandemic has had significant repercussions for nursing home residents, their families, and professionals. The objective was to describe the perspectives of residents, their families, and nursing home employees during the COVID-19 pandemic. A scoping review was carried out using the PRISMA Extension for Scoping Reviews. The inclusion criteria were: qualitative and/or mixed methods studies in English, French, Portuguese, and Spanish. The review covers studies published from 11 March 2020 to 15 February 2021. CINAHL, PubMed, Web of Science, ScienceDirect, Scopus, British Nursing Index, Proquest, PsycInfo, and Google Scholar databases were used. We conducted a systematic narrative synthesis, presenting the results narratively and showing descriptive statistics on the studies reviewed. Sixteen documents were obtained from 175 results. Two studies focused on residents and one on their families. The remaining studies looked at professionals. Nursing homes had great difficulty managing resources, which was exacerbated by emotional exhaustion among residents, employees, and family members. In nursing homes, creative initiatives and new forms of leadership appeared to meet emerging needs during the pandemic. The results of the study show the impact of the pandemic on nursing homes and the response capacity present among residents, family members, and professionals.

Implementing a Care Pathway for Complex Chronic Patients from a Nursing Perspective: A Qualitative Study.

A care pathway constitutes a complex care strategy for decision-making and the organization of processes in the care of complex chronic patients, avoiding the fragmentation of care. Health professionals play a decisive role in the implementation, development, and evaluation of care pathways. This study sought to explore nurses' opinions on the care pathway for complex chronic patients three years after its implementation. The study participants were thirteen nurses with different roles who were involved in the care pathway. Thematic content analysis of the semi-structured interviews resulted in four major themes: (a) the strengths of the route; (b) the impact of the route on caregivers; (c) the weaknesses of the route; and (d) the future of the route. Overall, the pathway was positively valued for the benefits it provides to patients, the caregiver, and the administration of professional health care. Participants voiced their concerns regarding: communication and coordination difficulties among professionals across the different levels of care, the need for improved teamwork and consensus among professionals at the same center, and human and material resources. The ongoing evaluation and monitoring of facilitators and barriers is necessary throughout the implementation process, to ensure continuity and quality of care in the health system.

[Personal support networks and informal care: differences by sex and place? (CUIDAR-SE II study)]. / Redes personales de apoyo y cuidado informal: ¿diferencias por sexo y territorio? (estudio CUIDAR-SE II).

OBJECTIVE: To compare the composition and functionality of social support of personal networks of caregivers of Granada and Gipuzkoa (Spain) according to sex and province. METHOD: Cross-sectional study with personal network analysis methodology. A sample of 66 caregivers segmented by sex in each province was selected. We collected variables of composition, functional and relational content in social support of 1,650 personal relationships of the networks studied. The EgoNet software was used for the collection, analysis and graphic representation of the networks. The association of the characteristics of the network with sex (of the caregivers and those who make up their networks) was measured, using Chi-square. The links within the networks were analyzed. RESULTS: The networks of caregivers in Granada are more feminized than those in Gipuzkoa. The women of Gipuzkoa have less familiar networks than those of Granada and with a greater number of relationships among the people who support them. They also have more support from men than women in all the tasks analyzed, except in attention to the disease. In both provinces, male caregivers show in their networks more women who help in specific care tasks than men. Only in activities outside the home in Granada there are more men who help than women (76.1% vs. 57%; p=0.026). CONCLUSION: Gender differences between provinces can be seen in the composition of the networks and in the way in which men and women receive and offer support in care.

Using High-Fidelity Simulation to Introduce Communication Skills about End-of-Life to Novice Nursing Students.

Background: High-fidelity simulation is being considered as a suitable environment for imparting the skills needed to deal with end-of-life (EOL) situations. The objective was to evaluate an EOL simulation project that introduced communication skills to nursing students who had not yet begun their training in real healthcare environments. Methods: A sequential approach was used. The "questionnaire for the evaluation of the end-of-life project" was employed. Results: A total of 130 students participated. Increasing the time spent in high-fidelity simulation significantly favored the exploration of feelings and fears regarding EOL (t = -2.37, p = 0.019), encouraged dialogue (t = -2.23, p = 0.028) and increased the acquisition of communication skills (t = -2.32, p = 0.022). Conclusions: High-fidelity simulation promotes communication skills related to EOL in novice nursing students.

Satisfaction with Social Support Received from Social Relationships in Cases of Chronic Pain: The Influence of Personal Network Characteristics in Terms of Structure, Composition and Functional Content.

The worldwide burden of chronic illnesses, constitutes a major public health concern and a serious challenge for health systems. In addition to the strategies of self-management support developed by nursing and health organizations, an individual's personal network represents a major resource of social support in the long-term. Adopting a cross-sectional design based on personal network analysis methods, the main aim of this study is to explore the relationship between satisfaction with the social support received by individuals suffering chronic pain and the structure, composition, and functional content in social support of their personal networks. We collected personal and support network data from 30 people with chronic pain (20 person's contacts (alters) for each individual (ego), 600 relationships in total). Additionally, we examined the level of satisfaction with social support in each of the 600 relationships. Bivariate and multivariate tests were performed to analyze the satisfaction with the social support received. Using cluster analysis, we established a typology of the 600 relationships under study. Results showed that higher satisfaction was associated with a balance between degree centrality and betweenness (i.e., measures of network cohesion and network modularity, respectively). Finally, new lines of research are proposed in order to broaden our understanding of this subject.

Smoking in nursing students: A prevalence multicenter study.

The role of nursing students as future health promoters of healthy behaviors is influenced by their attitude towards smoking. A cross-sectional study using a self-administered survey was performed to analyze smoking prevalence among undergraduate the nursing students who attend nursing faculties in 2 European countries (Spain and Portugal) during academic period 2015 to 2016. A total of 1469 subjects were surveyed (response rate of 79.8%). An 80% of the students were female with a mean age of 21.9 (4.8) years. The overall prevalence of tobacco use was 18.9%, with an average percentage of 16.2% in Portugal and 18.3% in Spain. Statistical significance was observed in relation to smoke and previous studies (16.4% vs 27.1%; P < .001). Only 1.1% of the students reported using electronic cigarette. 15.8% of smokers started smoking while at university with statistical gender and previous studies differences (P < .001). Fagerström and Richmond test showed low nicotine dependence (2.8 ±â€Š2) and moderate motivation to stop smoking (4.9 ±â€Š3), respectively. Smoking prevalence among nursing students was slightly higher than the general European population. For that reason, measures to reduce tobacco use have to be focused on students and university policies on tobacco control should be a challenge in the future.

[Social integration and gynecologic cancer screening of immigrant women in Spain]. / Integración social y cribado del cáncer ginecológico de las mujeres inmigrantes en España.

OBJECTIVE: To explore the association between immigrant status and performance of pap-smear and mammography, and to study the potential effect of social integration on that association. METHOD: Secondary analysis of the National Health Survey of Spain 2012. Individual data from 8944 women aged 18-75 were analyzed. Dependent variables were the performance of pap-smear tests and mammographies according to the guidelines of the state of residence. The level of integration in Spain was estimated through perceived social support (Duke-UNC scale) and the number of years living in Spain. Logistic regressions were used in order to obtain odds ratios (OR) and their 95% confidence intervals (95%CI), adjusted for confounders (sociodemographic and health-status). RESULTS: Compared to natives, immigrant women were more likely to not adhere to cervical cancer screening (OR: 1.31; 95%CI: 1.06-1.63) or breast cancer screening (OR:=3.13; 95%CI: 2.14-4.58). Additional adjustment by social support and length of residence in Spain attenuated the association, consequently losing statistical significance (OR: 1.08, 95%CI: .77-1.52 for pap-smear; OR: 1.62, 95%CI: .97-2.74 for mammographies). CONCLUSIONS: The probability of participating in the screening programs for gynecological cancer was lower if women were born abroad. Perceived social support and time living in Spain of immigrant women explained to a large extent the differences between immigrants and natives.

Personal Network Analysis in the Study of Social Support: The Case of Chronic Pain.

In the context of chronic illness, the individual's social and relational environment plays a critical role as it can provide the informal support and care over time, beyond healthcare and social welfare institutions. Social Network Analysis represents an appropriate theoretical and methodological approach to study and understand social support since it provides measures of personal network structure, composition and functional content. The aim of this mixed method study is to present the usefulness of Personal Network Analysis to explore social support in the context of chronic pain. Personal and support network data of 30 people with chronic pain (20 alters for each ego, 600 relationships in total) were collected, obtaining measures of personal network structure and composition as well as information about social support characteristics. Also, semi-structured interviews with participants were conducted to identify the context of their experience of pain, their limitations as regards leading an autonomous life, their social support needs and other aspects concerning the effect of pain on their social and relational lives. This approach shows the importance of non-kin social support providers and the significant role of non-providers in the personal networks of people suffering chronic pain.

Gender Differences in Social Support Received by Informal Caregivers: A Personal Network Analysis Approach.

Social support is an important predictor of the health of a population. Few studies have analyzed the influence of caregivers' personal networks from a gender perspective. The aim of this study was to analyze the composition, structure, and function of informal caregiver support networks and to examine gender differences. It also aimed to explore the association between different network characteristics and self-perceived health among caregivers. We performed a social network analysis study using a convenience sample of 25 female and 25 male caregivers. A descriptive analysis of the caregivers and bivariate analyses for associations with self-perceived health were performed. The structural metrics analyzed were density; degree centrality mean; betweenness centrality mean; and number of cliques, components, and isolates. The variability observed in the structure of the networks was not explained by gender. Some significant differences between men and women were observed for network composition and function. Women received help mainly from women with a similar profile to them. Men's networks were broader and more diverse and they had more help from outside family circles, although these outcomes were not statistically significant. Our results indicate the need to develop strategies that do not reinforce traditional gender roles, but rather encourage a greater sharing of responsibility among all parties.

Social Networks, Engagement and Resilience in University Students.

Analysis of social networks may be a useful tool for understanding the relationship between resilience and engagement, and this could be applied to educational methodologies, not only to improve academic performance, but also to create emotionally sustainable networks. This descriptive study was carried out on 134 university students. We collected the network structural variables, degree of resilience (CD-RISC 10), and engagement (UWES-S). The computer programs used were excel, UCINET for network analysis, and SPSS for statistical analysis. The analysis revealed results of means of 28.61 for resilience, 2.98 for absorption, 4.82 for dedication, and 3.13 for vigour. The students had two preferred places for sharing information: the classroom and WhatsApp. The greater the value for engagement, the greater the degree of centrality in the friendship network among students who are beginning their university studies. This relationship becomes reversed as the students move to later academic years. In terms of resilience, the highest values correspond to greater centrality in the friendship networks. The variables of engagement and resilience influenced the university students' support networks.

Validation of the Spanish Version of the ICECAP-O for Nursing Home Residents with Dementia.

BACKGROUND: Measurement of health-related quality of life (HRQoL) is important for a chronic disease, such as dementia, which impairs the quality of life of affected patients in addition to their length of life. This is important in the context of economic evaluations when interventions do not (only) affect HRQoL and these other factors also affect overall quality of life. OBJECTIVE: To validate the Spanish translation of the ICECAP-O's capability to measure Health-related quality of life in elderly with dementia who live in nursing homes. METHOD: Cross-sectional study. For 217 residents living in 8 Spanish nursing homes, questionnaires were completed by nursing professionals serving as proxy respondents. We analyzed the internal consistency and other psychometric properties. We investigated the convergent validity of the ICECAP-O with other HRQoL instruments, the EQ-5D extended with a cognitive dimension (EQ-5D+C), the Alzheimer's Disease Related Quality of Life (ADRQL) measures, and the Barthel Index measure of activities of daily living (ADL). RESULTS: The ICECAP-O presents satisfactory internal consistency (alpha 0.820). The factorial analysis indicated a structure of five principal dimensions that explain 66.57% of the total variance. Convergent validity between the ICECAP-O, EQ-5D+C, ADRQL, and Barthel Index scores was moderate to good (with correlations of 0.62, 0.61, and 0.68, respectively), but differed between dimensions of the instruments. Discriminant validity was confirmed by finding differences in ICECAP-O scores between subgroups based on ADL scores (0.70 low, 0.59 medium, and 0.39 high level care), dementia severity (0.72 mild, 0.63 medium, and 0.50 severe), and ages (0.59 below 75 years and 0.84 above 75 years). CONCLUSIONS: This study presented the first use of a Spanish version of the ICECAP-O. The results indicate that the ICECAP-O appears to be a reliable Health-related quality of life measurement instrument showing good convergent and discriminant validity for people with dementia.

Nursing student and professor perceptions and assessments of the achievement of practicum competencies: A mixed method approach.

Within the context of the European Higher Education Area's requirement of competency-based assessments, the objective of the present study was to evaluate the Nursing Degree Practicum experience at the University of Girona (Spain) and ascertain student and faculty perceptions of the degree of competency achieved as a result of the practicum. This cross-sectional, descriptive, study combined quantitative analysis of a questionnaire and qualitative analysis of focus group comments. In the quantitative part of the study, 163 fourth-year nursing students completed the questionnaire; the qualitative analysis was derived from a focus group of 5 students and 5 professors. On the questionnaire, overall practicum evaluation was 8.39 on a 10-point Likert scale; scores evaluating the nurse mentor/instructor and nursing professor were 8.43 and 7.98, respectively. The geriatrics practicum experience received the lowest overall score (7.81), while the surgical practicum received the lowest score on the adequacy of knowledge acquired in the classroom in previous courses (5.54). The best scores were earned by the mental health and intensive/emergency care practicum experiences (a mean of 9.05 and 8.70, respectively). Students and professors in the focus group agreed that the practicum met the Nursing degree program's competency goals, highlighting practical activity as the best methodology to evaluate competencies. Participants highlighted the importance of reflective practice and the role of the nurse mentor/instructor in student learning, and indicated that it is essential for the university and the health care centers where students take practicum courses to maintain a strong relationship and good communication. Finally, feedback from the nurse mentor/instructor and Nursing professor was very important to students, both to motivate them and to help them learn.

The evaluation of reflective learning from the nursing student's point of view: A mixed method approach.

BACKGROUND: Adapting university programmes to European Higher Education Area criteria has required substantial changes in curricula and teaching methodologies. Reflective learning (RL) has attracted growing interest and occupies an important place in the scientific literature on theoretical and methodological aspects of university instruction. However, fewer studies have focused on evaluating the RL methodology from the point of view of nursing students. OBJECTIVES: To assess nursing students' perceptions of the usefulness and challenges of RL methodology. DESIGN: Mixed method design, using a cross-sectional questionnaire and focus group discussion. METHODS: The research was conducted via self-reported reflective learning questionnaire complemented by focus group discussion. RESULTS: Students provided a positive overall evaluation of RL, highlighting the method's capacity to help them better understand themselves, engage in self-reflection about the learning process, optimize their strengths and discover additional training needs, along with searching for continuous improvement. Nonetheless, RL does not help them as much to plan their learning or identify areas of weakness or needed improvement in knowledge, skills and attitudes. Among the difficulties or challenges, students reported low motivation and lack of familiarity with this type of learning, along with concerns about the privacy of their reflective journals and about the grading criteria. CONCLUSIONS: In general, students evaluated RL positively. The results suggest areas of needed improvement related to unfamiliarity with the methodology, ethical aspects of developing a reflective journal and the need for clear evaluation criteria.

[Health system sustainability from a network perspective: a proposal to optimize healthy habits and social support]. / La sostenibilidad del sistema sanitario desde una perspectiva de redes sociales: una propuesta para la promoción de hábitos saludables y apoyo social.

The search of new health management formulas focused to give wide services is one of the priorities of our present health policies. Those formulas examine the optimization of the links between the main actors involved in public health, ie, users, professionals, local socio-political and corporate agents. This paper is aimed to introduce the Social Network Analysis as a method for analyzing, measuring and interpreting those connections. The knowledge of people's relationships (what is called social networks) in the field of public health is becoming increasingly important at an international level. In fact, countries such as UK, Netherlands, Italy, Australia and U.S. are looking formulas to apply this knowledge to their health departments. With this work we show the utility of the ARS on topics related to sustainability of the health system, particularly those related with health habits and social support, topics included in the 2020 health strategies that underline the importance of the collaborative aspects in networks.