Lessons learned from the MOMENT study on how to recruit and retain a target population online, across borders, and with automated remote data collection.

Increasingly, studies use social media to recruit, enroll, and collect data from participants. This introduces a threat to data integrity: efforts to produce fraudulent data to receive participant compensation, e.g., gift cards. MOMENT is an online symptom-monitoring and self-care study that implemented safeguards to protect data integrity. Facebook, Twitter, and patient organizations were used to recruit participants with chronic health conditions in four countries (USA, Italy, The Netherlands, Sweden). Links to the REDCap baseline survey were posted to social media accounts. The initial study launch, where participants completed the baseline survey and were automatically re-directed to the LifeData ecological momentary assessment app, was overwhelmed with fraudulent responses. In response, safeguards (e.g., reCAPTCHA, attention checks) were implemented and baseline data was manually inspected prior to LifeData enrollment. The initial launch resulted in 411 responses in 48 hours, 265 of which (64.5%) successfully registered for the LifeData app and were considered enrolled. Ninety-nine percent of these were determined to be fraudulent. Following implementation of safeguards, the re-launch yielded 147 completed baselines in 3.5 months. Eighteen cases (12.2%) were found fraudulent and not invited to enroll. Most fraudulent cases in the re-launch (15 of 18) were identified by a single attention check question. In total, 96.1% of fraudulent responses were to the USA-based survey. Data integrity safeguards are necessary for research studies that recruit online and should be reported in manuscripts. Three safeguard strategies were effective in preventing and removing most of the fraudulent data in the MOMENT study. Additional strategies were also used and may be necessary in other contexts.

Psychometric characteristics of the multidimensional scale of perceived social support in ostomy patients and their caregivers.

Despite the importance of social support in ostomy care, the Multidimensional Scale of Perceived Social Support (MSPSS) does not appear to be validated in the context of ostomy care. This study evaluated the psychometric characteristics of MSPSS in ostomy patients and their informal caregivers. The MSPSS was tested in a sample of 775 participants with confirmatory factor analysis. Internal consistency reliability was assessed with the ordinal Omega coefficient. Criterion-related validity was ascertained via hypothesis testing by correlating the scores of the MSPSS with other measures. MSPSS for patients and caregivers has a three-factor structure with a good fit. Internal consistency reliability of the factors was excellent. Concurrent validity was supported by the negative correlations between MSPSS scores with depression and stoma-related QoL, and the positive correlations with perceived mutuality. Our research indicates that the MSPSS is a sound measure of social support for ostomy patients and their caregivers.

The impact of gender on the nursing figure and nurses' interprofessional relationships: A multimethod study.

AIMS: To identify the current presence of stereotypes about the nursing profession in Italy and to understand how gendered processes and modalities are regulated and expressed in the physician-nurse dyad, and the implications for professional identity and autonomy. DESIGN: Qualitative multimethod design. METHODS: Forty-five interviews were conducted with nurses and physicians. The collected qualitative data underwent automatic textual data analysis using a multidimensional exploratory approach and a gender framework analysis. RESULTS: In Italy, nurses' roles are still associated with gender stereotypes stemming from the predominant male culture, which affects sexual and gender identity, the division of labor, and access to career paths. This leads to disadvantages in the nursing profession, which is heavily dominated by women. CONCLUSION: Biological differences between sexes generate an unconscious yet shared symbolic gender order composed of negative stereotypes that influence nurses' professional roles and activities. They follow behaviors that enter the work routine and institutionalize organizational processes. These effects are also seen in the asymmetric, limited, and reciprocal interprofessional relationships between male physicians and female nurses, where the former hinders the latter's professional autonomy and access to top positions. IMPLICATIONS FOR THE PROFESSION: This survey raises awareness of gender issues and stimulates reflection. It also enables health and nursing organizations to take action to raise gender awareness and education by countering the image of a non-autonomous profession. The analysis of gender processes allows us to identify interventions that can counteract forms of oppression in the work environment that lead to the emergence of nursing as a non-autonomous profession.

Self-care: An effective strategy to manage chronic diseases.

The increase in life expectancy and an aging demographic have led to a surge in chronic diseases, presenting substantial challenges to healthcare systems worldwide. Chronic conditions are characterized by their long-term nature, recurrence and incurability, necessitating effective management strategies. This paper aims to explore the concept of self-care as a pivotal element in chronic disease management, examining its evolution, components and the role of caregivers in facilitating self-care practices. It also seeks to review the development of instruments for measuring self-care and discuss recent experimental research on self-care interventions. Self-care is an essential strategy for managing chronic diseases, involving maintenance, monitoring and management practices influenced by various personal and environmental factors. Caregivers play a vital role in supporting self-care, especially within certain cultural contexts. The development of reliable and valid instruments to measure self-care is crucial for assessing the effectiveness of the interventions. Recent trials, such as those focusing on motivational interviewing and virtual reality, show promise in improving self-care behaviors and patient outcomes. This paper advocates for the design of tailored, evidence-based interventions and highlights the potential of artificial intelligence in advancing self-care research. Future studies should continue to explore the dyadic dynamics between patients and caregivers and include economic evaluations to inform clinical decision-making.

Generic and disease-specific self-care instruments in older patients affected by multiple chronic conditions: A descriptive study.

AIMS: To describe and compare generic and disease-specific self-care measures in patients with multiple chronic conditions (MCCs) in the three dimensions of self-care maintenance, monitoring, and management. DESIGN: Multicentre cross-sectional study. METHODS: Patients aged 65 and over with MCCs. We used Self-Care of Chronic Illness Inventory to measure generic self-care, Self-care of Diabetes Inventory to measure self-care in diabetes mellitus, Self-Care of Heart Failure (HF) Index to measure self-care in HF, and Self-Care of Chronic Obstructive Pulmonary Disease Inventory to measure self-care in chronic lung diseases. RESULTS: We recruited 896 patients. Multimorbid patients with diabetes had lower scores on the self-care maintenance scale, and diabetic patients in insulin treatment on the generic management scale than on the disease-specific instrument. Multimorbid patients with HF or chronic lung diseases scored higher on generic self-care maintenance and monitoring scales than disease-specific ones. There was a partial consistency between the generic and disease-specific self-care maintenance and management. Inadequate behaviours were recorded in disease-specific self-care monitoring rather than generic ones. CONCLUSIONS: Older patients affected by MCCs scored differently in the generic and disease-specific instruments, showing inadequate self-care in some of the three self-care dimensions. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The choice between generic and disease-specific instruments to use in clinical practice and research should be made considering the specific aims, settings, patients characteristics, and knowledge of the different performance of the instruments by users. IMPACT: No study has described and compared generic and specific self-care measures in patients affected by MCCs. Knowing these differences can help nurses choose the most suitable measure for their aims, context, and patients and plan generic and disease-specific self-care educational interventions for those behaviours in which MCCs patients perform poorly. PATIENT CONTRIBUTION: Patients were informed about the study, provided informed consent, and answered questionnaires through interviews.

Self-care in patients affected by inflammatory bowel disease and caregiver contribution to self-care (IBD-SELF): a protocol for a longitudinal observational study.

INTRODUCTION: Supporting patient self-care and the contribution of their caregivers is crucial in chronic illness care. Inflammatory bowel disease (IBD) is a chronic condition whose prevalence is expected to double, especially in Western countries. IBD symptoms can negatively impact patients' well-being, causing high anxiety, depression, stress and reduced quality of life. These symptoms also affect the health of family members and friends, who often take on caregiving roles during exacerbations. Knowledge about self-care in IBD (IBD-SELF) is limited, and few studies have explored this context. This paper outlines a research protocol for a multicentre longitudinal study to investigate patient self-care and caregiver contributions to IBD-SELF. METHODS AND ANALYSIS: A sample of 250 consecutive patients diagnosed with IBD and their caregivers will be recruited from 9 dedicated IBD units in northern, central and southern Italy during outpatient visits. Data collection will occur at baseline, 6 and 12 months after enrolment. Multivariable regressions, path analyses and structural equation models will identify predictors (eg, health literacy, caregiver burden and depression) and outcomes (use of healthcare services, disease severity and quality of life) of self-care and caregiver contributions. Dyadic analyses will control for the interdependence of dyad members. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Territorial Ethics Committee (Lazio 3) N. 0023486/23 and registered on ClinicalTrials.gov (Identifier number: NCT06015789). This study will enhance our understanding of the self-care process in the patient-caregiver dyad in IBD, aiding the design of future educational interventions and promoting greater patient and caregiver involvement in the care pathway. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT06015789.

Generic and disease-specific caregiver contribution to self-care in a population with multiple chronic conditions: A comparative study.

AIM: Describe and compare generic and disease-specific caregiver contribution (CC) to self-care behaviours in the dimensions of self-care maintenance, self-care monitoring and self-care management in multiple chronic conditions (MCCs). DESIGN: Multicentre cross-sectional study. METHODS: We enrolled caregivers of patients with MCC, from April 2017 to November 2022, if they were (a) 18 years of age or older and (b) identified by the patient as the principal unpaid informal caregiver. The Caregiver Contribution to Self-Care of Chronic Illness Inventory, Caregiver Contribution to Self-Care of Heart Failure Index, Caregiver Contribution to Self-Care of COPD Inventory and Caregiver Contribution to Self-care of Diabetes Inventory were used to measure generic and disease-specific contribution to patient self-care. Descriptive statistics, Student's t-tests and Pearson's correlation coefficients were used. RESULTS: We found adequate generic CC for self-care monitoring but inadequate CC in self-care maintenance and management. All CC to disease-specific self-care maintenance, monitoring and management scales' scores were inadequate, except for caregivers of diabetic patients in which we observed an adequate score in the CC to self-care maintenance and self-care management scales in those practice insulin therapy. CONCLUSION: Caregivers experience difficulties in performing behaviours of contribution to their patients affected by chronic conditions. Caregivers of patients with MCCs contribute more to self-care in aspects related to provider prescriptions and less to lifestyle changes. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Healthcare professionals have to know in which behaviours caregivers show gaps and reflect on the reasons for poor CC to self-care to develop interventions to enhance these behaviours. IMPACT: This study underlines the importance of choosing the most appropriate instrument for measuring CC to self-care, considering the caregiver's characteristics. REPORTING METHOD: We adhered to STROBE guidelines. PATIENT OR PUBLIC CONTRIBUTION: Caregivers of patients affected by MCCs were enrolled.

Factors That Influence Quality of Life in Postmenopausal Osteoporotic Women With Nonvertebral Fractures: The Guardian Angel Multicenter Longitudinal Study.

The knowledge of variables associated with quality of life in women with nonvertebral fractures is poor. The aim of this study was to examine the independent associations between sociodemographic and clinical factors, self-care, and quality of life in this specific population. We undertook a 3-year multicenter longitudinal study on a cohort of Italian postmenopausal osteoporotic women with three follow-ups at 1, 3, and 6 months. Nurses asked women to complete questionnaires on quality of life and self-care. The sample (n = 532) had a mean age of 74.78 years. The results showed that women taking more than two medications per day (p = .026) and those with nine or more years of education (p = .036) were more likely to exhibit better quality of life levels (p < .001) than their counterparts. Both self-care and quality of life scores improved over time in all participants. This study shows positive independent associations between quality of life and polypharmacy, education, and self-care behaviors, which were improved by educational interventions to attain a better quality of life in our participants.

Self-care behaviours and their determinants in people affected by coronary heart disease.

OBJECTIVE: To describe self-care in Italian adults with coronary heart disease and to identify sociodemographic and clinical determinants of self-care. DESIGN: This is a cross-sectional analysis of data from the Italian multicentre longitudinal study. METHODS: We used the follow instruments: Self-Care of coronary heart disease inventory, Self-care Self Efficacy Scale, Charlson Comorbidity Index and Sociodemographic questionnaire. Descriptive statistics including absolute numbers, percentages, means and standard deviations were used to describe the sociodemographic and clinical characteristics of the sample, and the items. A structural equation model was fitted to understand sociodemographic and clinical variables associated with self-care, and possible effects mediated by self-efficacy. RESULTS: We enrolled 427 patients. Self-care maintenance, monitoring, management and self-care self-efficacy means scores were 58.27 (SD = 20.07), 48.53 (SD = 26.97), 65.34 (SD = 22.85) and 77.16 (SD = 20.76), respectively. Except for the self-care self-efficacy scale, all the scores lay below the cut off 70 for adequacy. Older age, higher comorbidities, a higher number of stents placed, and the presence of a caregiver predicted poor self-care. CONCLUSION: Self-care in Italian CHD populations is poor. Several associations were found between the dimensions of self-care and sociodemographic factors. Implications for the profession these findings are important for health care providers to plan interventions to improve self-care behaviour. IMPACT: The study addressed self-care behaviours of coronary heart disease patients. Self-care was poor in this population; several associations were found between the dimensions of self-care and sociodemographic and clinical determinants. Our results can be used to support health professionals in planning interventions to improve specific self-care domains. REPORTING METHOD: STROBE checklist was followed.

The Health of a Migrant Population: A Phenomenological Study of the Experience of Refugees and Asylum Seekers in a Multicultural Context.

Refugees and asylum seekers bring with them a plurality of cultures, traditions, and values that could prove crucial in influencing perceived health needs, requests for intervention, or willingness to undergo specific health treatments. Although studies have focused on the health consequences of forced migration, in recent years, there has been a lack of information on how refugees and asylum seekers represent their experiences of perceived health needs and elements that influence well-being, in a community context. This study aims to explore the experience of refugees and asylum seekers in an Italian multicultural community about perceived health needs. A qualitative phenomenological study was conducted with an interpretive approach. The data were collected using a semi-structured face-to-face interview. The interviews were transcribed, read thoroughly, and analyzed. Nineteen refugees and asylum seekers were interviewed. Three main themes were extracted: (1) the centrality of the family to feel healthy; (2) feeling part of a community; and (3) stability and security. The results confirm that health needs, experiences, and different cultural representations of health and illness should be read and addressed with a culturally competent vision. This study was not registered.

Telehealth vs in-person education for enhancing self-care of ostomy patients (Self-Stoma): Protocol for a noninferiority, randomized, open-label, controlled trial.

INTRODUCTION: Postoperative patients with ostomies experience significant changes in their lives as a result of the device implantation. Self-care is important to improve their health outcomes. Telehealth provides an opportunity to expand access to self-care education. AIM: This is a multicenter, non-inferiority randomized, open-label, controlled trial to evaluate the non-inferiority of a telehealth intervention to the standard in-person approach in improving self-care behaviors. METHODS AND ANALYSIS: Three hundred and eighty-four patients aged ≥ 18 years, with a recently placed ostomy, no stomal/peristomal complications, and documented cognitive integrity will be randomly assigned (1:1) to receive either a telehealth intervention (four remote educational sessions) or a standard educational approach (four in-person sessions) delivered in outpatient settings. Every session (remote and in-person) will occur on Days 25, 32, 40, and 60 after discharge. Follow-ups will occur 1, 3, and 6 months after the last intervention session. Primary outcome is self-care maintenance measured using the Ostomy Self-care Index (OSCI). Secondary outcomes include self-care monitoring, self-care management, self-efficacy (OSCI), quality of life (Stoma specific quality of Life), depression (Patient Health Questionnaire-9), adjustment (Ostomy Adjustment Inventory-23), stomal and peristomal complication rates, healthcare services utilization, mobility, and number of working days lost. Analyses will be performed per intention-to-treat and per protocol. ETHICS AND DISSEMINATION: This study has been approved by the Institutional Review Board of the main center (registration number: 119/22). Following completion of the trial, dissemination meetings will be held to share the results of the study with the participants and the health-care team. Adoption of telehealth technologies for ostomy patients can improve service organization by ensuring better integration and continuity of care. If the remote intervention produces comparable effects to the in-person intervention, it would be wise to make telehealth education an alternative treatment for addressing the educational needs of uncomplicated postoperative ostomy patients. TRIAL REGISTRATION: ClinicalTrials.gov (identifier number: NCT05796544).

Sex based differences in depression, anxiety, and quality of life and predictors of quality of life among South Asian individuals with chronic obstructive pulmonary disease: A Bayesian analysis.

BACKGROUND: COPD can affect both men and women leading to deteriorating impact on general well-being, personal, and family life and decreased quality of life. Anxiety, depression, and self-care behaviours can affect the quality of life of individuals with COPD. There is a dearth of sex-based comparative analyses of anxiety, depression, quality of life, and predictors of quality of life among South Asian individuals with COPD. PURPOSE: To identify the sex-based differences in depression, anxiety, and quality of life and the predictors of quality of life among South Asian individuals with COPD. METHODS: A cross-sectional survey of 294 men and 114 women with COPD was conducted in Khyber Pakhtunkhwa, Pakistan. Hospital Anxiety and Depression scale, World Health Organization Quality of Life-brief version, Self-Care of Chronic Obstructive Pulmonary Disease Inventory, the Self-Care Self-Efficacy in COPD Scale were used for data collection. Bayesian independent sample t-test was used to compare mean differences in depression, anxiety, and quality of life among men and women. Two regression models were examined to determine if age, years of living with COPD, anxiety, depression, self-care self-efficacy, self-care monitoring, management, and maintenance were predictors of quality of life among men and women. FINDINGS: Bayesian analysis showed anecdotal evidence that women had higher levels of depression, but lower levels of anxiety compared to men. Anecdotal evidence indicated that the physical quality of life of men was better than women, but strong evidence that their social relationship and environmental quality of life was better than women. Years of living with COPD, anxiety, depression, self-care self-efficacy, self-care management, self-care monitoring, and self-care maintenance were stronger predictors of women's quality of life. Anxiety and depression only predicted men's psychological quality of life, but predicted women's psychological, social relationships, and environmental quality of life. CONCLUSIONS: The findings contribute to literature highlighting sex-based differences in anxiety, depression, and quality of life among South Asian men and women with COPD. Men generally reported higher levels of quality of life than women across all domains. Women's social relationships and environmental quality of life were greatly impacted by anxiety and depression. Quality of life interventions for women should be targeted at improving their social relationships and environmental satisfaction and addressing anxiety and depression.

Psychometric testing of the caregiver contribution to self-care of coronary heart disease inventory.

BACKGROUND: Caregivers are important contributors to the self-care of patients with coronary heart disease (CHD). AIMS: The aims of this study are to describe the development and psychometric properties of the caregiver contribution to self-care of coronary heart disease inventory (CC-SC-CHDI). METHODS: The CC-SC-CHDI was developed from the patient version of the scale, the Self-care of Coronary Heart Disease Inventory (SC-CHDI) and translated into Italian using forward and backward translation. Baseline data from the HEARTS-IN-DYADS study were used. Confirmatory factor analysis (CFA) was conducted to assess factorial validity; Cronbach's alpha and the model-based internal consistency index were used to test internal consistency reliability, and Pearson's correlation coefficient was used to test convergent validity, by investigating the association between the CC-SC-CHDI and the SC-CHDI scores. RESULTS: We included 131 caregivers (mean age 55 years, 81.2% females, 74% married) of patients affected by CHD (mean age 66 years, 80.2% males, 74% married). The CFA confirmed two factors in the caregiver contribution to self-care maintenance scale ("consulting behaviors" and "autonomous behaviors"), one factor for the CC to self-care monitoring scale, and two factors in the CC to self-care management scale ("consulting behaviors and problem-solving behaviors"). Reliability estimates were adequate for each scale (Cronbach's alpha and model-based internal consistency indexes ranging from 0.73 to 0.90). Significant and positive correlations were observed between CC-SC-CHDI and SC-CHDI scales. CONCLUSION: The CC-SC-CHDI has satisfactory validity and reliability and can be used confidently in clinical settings and research to assess caregiver contributions to CHD self-care.

Healthcare professionals' perspectives on use of PCSK9 inhibitors in cardiovascular disease: an in-depth qualitative study.

AIM: Injectable medicines such as PCSK-9 inhibitors are increasingly used to manage risk factors for cardiovascular events with little information around the perceptions of healthcare professionals (HCPs) on the administrative and clinical practicalities. The aim was to identify the facilitators and barriers on the use of injectable therapies with CV benefits through interviews with HCPs. METHODS AND RESULTS: Qualitative interviews were conducted in the United Kingdom (London and Leeds) and Italy (Rome and Milan) in 2021. Coding was undertaken using NVivo and thematic analysis performed. A total of 38 HCPs were interviewed, 19 in each country composing of physicians (n = 18), pharmacists (n = 10), nurses (n = 9) and pharmacy technician (n = 1). Four themes emerged: (i) Clinicians' previous experiences with injectable therapies (ii) Challenges with patients' behaviours and beliefs (iii) Clinicians' knowledge of injectable therapies and therapeutic inertia and (iv) Organisational and governance issues. The behaviour and beliefs from healthcare professionals focused on facilitating behaviour change as well as the poor interdisciplinary working and collaboration. Therapeutic inertia was raised where physicians either lacked awareness of injectable therapies or were unwilling to prescribe them. The importance of facilitating patient education on injection techniques was highlighted while organisational and governance issues identified the lack of guidance to inform practice. Clear pathways are required to identify those who were eligible for injectable therapies as well as on how injectables should be prescribed. CONCLUSION: If medicine optimisation is to be achieved, there needs to be structured processes in place to identify eligible patients and the development of educational material.

Association between Boarding of Frail Individuals in the Emergency Department and Mortality: A Systematic Review.

(1) Background: Older patients who attend emergency departments are frailer than younger patients and are at a high risk of adverse outcomes; (2) Methods: To conduct this systematic review, we adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Guidelines. We systematically searched literature from PubMed, Embase, OVID Medline®, Scopus, CINAHL via EBSCOHost, and the Cochrane Library up to May 2023, while for grey literature we used Google Scholar. No time restrictions were applied, and only articles published in English were included. Two independent reviewers assessed the eligibility of the studies and extracted relevant data from the articles that met our predefined inclusion criteria. The Critical Appraisal Skills Program (CASP) was used to assess the quality of the studies; (3) Results: Evidence indicates that prolonged boarding of frail individuals in crowded emergency departments (Eds) is associated with adverse outcomes, exacerbation of pre-existing conditions, and increased mortality risk; (4) Conclusions: Our results suggest that frail individuals are at risk of longer ED stays and higher mortality rates. However, the association between the mortality of frail patients and the amount of time a patient spends in exposure to the ED environment has not been fully explored. Further studies are needed to confirm this hypothesis.

Impact of telehealth on stroke survivor-caregiver dyad in at-home rehabilitation: A systematic review.

AIM: To examine studies involving the impact of telerehabilitation (TLR), tele-training and tele-support on the dyad stroke survivor and caregiver in relation to psychological, physical, social and health dimensions. DESIGN: A systematic review was conducted. DATA SOURCES: The following electronic databases were consulted until September 2023: PsycInfo, CINAHL, Eric, Ovid, PubMed, Scopus, Cochrane Central and Web of Science. REVIEW METHODS: It was conducted and reported following the checklists for Reviews of PRISMA 2020 Checklist. Critical evaluation of the quality of the studies included in the review was performed with the Joanna Briggs Institute Checklists. DATA SYNTHESIS: A total of 2290 records were identified after removing duplicates, 501 articles were selected by title and abstract and only 21 met the inclusion criteria. It included 4 quasi-experimental studies, 7 RCTs, 1 cohort study and 9 qualitative studies. The total number of participants between caregivers and stroke survivors was 1697, including 858 stroke survivors and 839 caregivers recruited from 2002 to 2022. For a total of 884 participants who carried out TLR activities in the experimental groups,11 impact domains were identified: cognitive/functional, psychological, caregiver burden, social, general health and self-efficacy, family function, quality of life, healthcare utilization, preparedness, quality of care and relationship with technology. CONCLUSIONS: The results support the application of telehealth in the discharge phase of hospitals and rehabilitation centres for stroke survivors and caregivers. TLR could be considered a substitute for traditional rehabilitation only if it is supported by a tele-learning programme for the caregiver and ongoing technical, computer and health support to satisfy the dyad's needs. IMPACT: Designing a comprehensive telemedicine programme upon the return home of the dyad involved in the stroke improves the quality of life, functional, psychological, social, family status, self-efficacy, use of health systems and the dyad's preparation for managing the stroke. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

The Role of Spirituality in Stroke Survivors and Their Caregivers: A Systematic Review.

Although several studies have analyzed the effects of spirituality on stroke survivors' physical functioning and their caregiver's outcomes, no systematic review or meta-synthesis was found to identify the lived experiences of stroke survivors and caregivers regarding spirituality. For these reasons, this study aimed to analyze quantitively and qualitatively research relating to stroke survivors' and caregivers' experiences. The included studies were RCT studies, quasi-experimental studies, qualitative, descriptive, ethnographic, and phenomenological studies, and cross-sectional studies (n = 37), with a total of 6850 stroke survivors and 1953 caregivers enrolled. Spirituality appears to play an important role in improving the quality of life and decreasing anxiety and depression of both stroke survivors and their caregivers.

Quality of life in ICU survivors and their relatives with post-intensive care syndrome: A systematic review.

BACKGROUND: Post-intensive care syndrome (PICS) is characterized by all three adverse survivorship dimensions: physical function, cognitive function and mental health status. AIM: This review aimed to describe the quality of life (QoL) of Intensive Care Unit (ICU) survivors with PICS after discharge and of their relatives with Family Post-intensive care syndrome (PICS-F) and to report anxiety, depression and Post-Traumatic Stress Disorders (PTSD) in studies investigating PICS. STUDY DESIGN: A systematic review was carried out. We searched PubMed, Scopus, Web of Science and the Cumulative Index to Nursing and Allied Health Literature. This review was registered in the PROSPERO database (CRD42022382123). RESULTS: We included 19 studies of PICS and PICS-F in this systematic review. Fourteen observational studies report the effects of PICS on depression, 12 studies on anxiety and nine on post-traumatic stress disorder and 10 on QoL. Mobility, personal care, usual activities and pain/discomfort in QoL were the domains most affected by PICS. A significant association was demonstrated between a high level of ICU survivors' anxiety and high levels of ICU relatives' burden. Strain-related symptoms and sleep disorders were problems encountered by ICU relatives with PICS-F. CONCLUSION: PICS and PICS-F were widespread experiences among ICU survivors and their ICU relatives, respectively. The results of this review showed the adverse effects of PICS and PICS-F on QoL. RELEVANCE TO CLINICAL PRACTICE: PICS and PICS-F strongly impact the rehabilitation process and are measured in terms of health costs, financial stress and potentially preventable readmission.

Health Literacy and Self-Care in Patients with Chronic Illness: A Systematic Review and Meta-Analysis Protocol.

Self-care plays a critical role in symptom recognition, management, and risk factor modification for patients with chronic illnesses. Despite its significance, self-care levels in this population are generally poor. Health literacy (HL) is pivotal for promoting effective self-care, yet the association across specific chronic illnesses remains fragmented and conflicting. Therefore, a systematic review and meta-analysis will be conducted. Inclusion criteria encompass quantitative studies involving adult patients with at least one chronic illness reporting on the association between a measure of HL and one or more elements of self-care behaviors as outcomes. Databases to be searched include PubMed, CINAHL, APA PsycINFO, Embase, Web of Science, and Cochrane Central Register of Controlled Trials. The studies will undergo risk of bias and certainty of evidence assessment using ROBINS-E and GRADE. Extracted data will include authors, publication date, aim(s), study location, design, sample characteristics, chronic illness type, study length, HL, and self-care measures. Understanding the link between HL and self-care can aid healthcare providers in implementing strategies to enhance health-promoting behaviors, contributing valuable insights to the scientific community and fostering nuanced discussions. This protocol ensures methodological transparency, stimulates discourse, and paves the way for informed interventions to improve overall health outcomes.