Screening and diagnosis of COPD and asthma based on government guidelines empowering peripheral health workers in Pune district Maharashtra, India: A study protocol.

COPD is the second leading cause of death in India. The guidelines for early detection of COPD were released by the Government of India in 2019. However, due to the COVID-19 pandemic, its implementation could not be optimal. Diagnosis of COPD is based on the presence of respiratory symptoms, the presence of exposure to risk factors, and the presence of poorly reversible airflow obstruction as assessed using a spirometer. Spirometers are currently available only at a few district hospitals. The existing guidelines expect the patient to visit the Rural hospital/ Community Health Centre, which does not have a spirometer or a pulmonary medicine specialist. Also, it is not feasible or accessible for patients to visit the district hospital to get diagnosed. The current study will be implemented to determine the prevalence, annual incidence of COPD and asthma, quality of life, and nutritional status of COPD and asthma patients. The novelty of this implementation research, which will be conducted in collaboration with Zilla Parishad (i.e., Government), Pune district, is the empowerment of an Accredited Social Health Activist (ASHA), a peripheral health worker to screen all individuals using a peak flow meter and confirmation of the diagnosis at health and wellness center (HWC). An accredited Social Health Activist (ASHA) will take relevant history to suspect COPD and asthma in 30+-year-old adults, and she will refer the suspected cases to the Community Health Officer (CHO) at the Health and Wellness Center. The CHO/ Medical officer of PHC will initiate the appropriate treatment after confirming the diagnosis using a portable spirometer. The difficult-to-diagnose patients with comorbidity and acute exacerbations will be referred to the nearest higher center, i.e., Primary Health Centre (PHC) or Community Health Centre (CHC), where a primary care physician is available. The ASHA workers will provide two follow-ups to these patients in a year, depending on the severity, to ensure compliance with the treatment. Thus, early diagnosis and appropriate treatment of COPD and asthma at the community level may help to reduce the episodes of acute exacerbations.

Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study.

BACKGROUND: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial. OBJECTIVE: This study aims to assess patients' and health care providers' perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns. METHODS: In this semistructured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, as well as 18 health care providers working within and outside of hemophilia treatment centers, participated. Perspectives of patients and providers were explored separately. To explore requirements, participants were asked to prioritize functionalities. RESULTS: Participants expected a PHR would increase the transparency of health information, improve patients' understanding of their illness, and help the coordination of care between health care providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on 4 themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization (ie, more confrontational reminders of their illness), providers were concerned about an increased workload. CONCLUSIONS: People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition.

Let's talk about recovery in mental health: an international Delphi study of experts by experience.

AIMS: The concept of recovery is featured in the strategic plans of the World Health Organization as well as in other national mental health plans; however, there have been differing interpretations of what it means. This article aims to achieve a consensus on the key aspects of recovery in mental health from the perspective of movements of users and survivors of psychiatry at an international level. Four specific objectives were proposed in this study: (1) to identify what recovery in mental health means, (2) to identify the indicators that a person is progressing in their recovery, (3) to determine the factors that facilitate the recovery process, and (4) to determine the factors that hinder the recovery process. METHODS: A three-round e-Delphi study was conducted with the participation of 101 users and survivors of psychiatry, adhering to the CREDES checklist to ensure methodological rigour. RESULTS: The results reveal 26 key aspects that define recovery, 31 indicating that a person is progressing in their recovery process, 8 that facilitate recovery and 12 that hinder recovery. The most agreed-upon statements for defining recovery highlight the importance of empowerment, leading a fulfilling life, ensuring safe-living conditions and acknowledging individuals as holders of rights. Similarly, empowerment and agency were highly agreed upon as relevant recovery indicators. Key findings underscore the significance of a supportive and respectful social environment in facilitating recovery, while coercion, discrimination and lack of support from significant others hinder recovery. CONCLUSIONS: Despite cultural differences and recovery's subjective nature, our results demonstrate that an international consensus on critical recovery aspects is attainable. Highlighting a significant shift, we emphasize the 'Transition' process to signify moving away from the biomedical model approach and advocating for collective rights. Our findings advocate for empowerment, users' rights and the move towards person-centred care that integrates social, political and economic contexts. These consensus statements lay the groundwork for future research across diverse regions and cultures, offering insights into recovery's meaning and potential for innovative approaches in diagnosis, intervention and evaluation.

Empowering medical students: bridging gaps with high-fidelity simulations; a mixed-methods study on self-efficacy.

BACKGROUND: High-fidelity simulations play a crucial role in preparing for high-mortality events like cardiopulmonary arrest, emphasizing the need for rapid and accurate intervention. Proficiency in cardiopulmonary resuscitation(CPR) requires a strong self-efficacy(SE); training for both is crucial. This study assesses the impact of Advanced Life Support(ALS) simulation on SE changes in final-year medical students. METHODS: This mixed-methods prospective simulation study involved medical students in emergency medicine internships, examining self-efficacy perceptions regarding ALS technical skills(ALS-SEP). A comparison was made between students who underwent scenario-based ALS simulation training and those who did not. Competencies in chest compression skills were assessed, and the concordance between ALS-SEP scores and observed CPR performances were evaluated. Focus group interviews were conducted and analyzed using content analysis techniques. RESULTS: The study involved 80 students, with 53 in the experimental group(EG) and 27 in the control group(CG). The EG, underwent simulation training, showed a significantly higher ALS-SEP change than the CG(p < 0.05). However, there was low concordance between pre-simulation SEP and actual performance. Compression skills success rates were inadequate. Qualitative analysis revealed main themes as"learning"(32.6%), "self-efficacy"(29%), "simulation method"(21.3%), and "development"(16.5%). DISCUSSION: Post-simulation, students reported improved SEP and increased readiness for future interventions. The findings and qualitative statements support the effectiveness of simulation practices in bridging the gap between SEP and performance. Utilizing simulation-based ALS training enhances learners' belief in their capabilities, raises awareness of their competencies, and encourages reflective thinking. Given the importance of high SEP for ALS, simulation trainings correlating self-efficacy perception and performance may significantly reduce potential medical errors stemming from a disparity between perceived capability and actual performance.

Adaptation and psychometric assessment of a sexual and reproductive empowerment scale in Arabic among refugee and non-refugee adolescent girls.

BACKGROUND: Sexual and reproductive empowerment (SRE) is an important determinant of women's and girls' health yet measuring it is complex due to cultural and domain-specific variations. This study describes the process of adapting an SRE scale consisting of four domains (self-efficacy; future orientation; social support; and safety) and testing its psychometric properties among Arabic speaking adolescent girls in Lebanon. METHODS: An SRE scale developed in a Western context was adapted in four steps: (1) reviewing the scale and selecting culturally appropriate domains for translation to standard Arabic; (2) conducting cognitive interviews with 30 11-17-year-old adolescent girls in Lebanon; (3) administering the scale to 339 refugee adolescent girls who participated in an early marriage intervention; and (4) conducting confirmatory factor analysis (CFA) on the data to assess the scale's psychometric properties. RESULTS: The original model for the 13-item, four-domain adapted scale demonstrated poor fit in CFA. After iteratively removing two items, scale properties were improved, albeit were not optimal. The validity and reliability results for the self-efficacy domain were acceptable. Cognitive interview data revealed that Arab adolescent girls understood self-efficacy in relational terms, recognizing that autonomous decision-making is not necessarily favored but is influenced by parents and family. CONCLUSIONS: This study presents an effort to customize an SRE scale for use in studies on the health of adolescent girls in an Arab cultural context. Findings from cognitive interviews highlight the importance of taking into consideration relationality in adolescent sexual and reproductive decision-making. The self-efficacy domain in the adapted scale demonstrates acceptable psychometric properties and is recommended for use in health studies to capture SRE.

The impact of empowerment theory-based health education on Alzheimer's disease informal caregivers: a randomized controlled trial.

Background: There is a lack of evidence regarding the effectiveness of empowerment healthy education for caregivers of Alzheimer's patients. Objective: To explore the effectiveness of the intervention of health education guided by empowerment theory on dementia knowledge, caregiving readiness, positive caregiving emotions, anxiety, and depression in informal Alzheimer's disease caregivers. Design: A single-blinded, randomized controlled trial. Setting: A teaching hospital in Tianjin, China. Participants: Eighty caregivers of Alzheimer's disease patients. Methods: Participants were recruited from the hospital and randomly assigned to either experimental or control group. The experimental group underwent a 12-weeks, one-to-one intervention of six session lasting 45-60 min each. The control group received conventional health education. Outcome measures included dementia knowledge, caregiver readiness (primary outcomes), positive caregiving emotions, anxiety, and depression (secondary outcomes). Results: After 12 weeks, the intervention group exhibited significantly higher levels of dementia knowledge, caregiver readiness, and positive caregiving emotions compared with the control group. Furthermore, levels of hospitalization-related anxiety and depression were lower in the intervention group. All study results of this study showed statistically significant differences (p < 0.05). Discussion: Empowerment theory-based health education appears to be an effective intervention for improving caregiver and readiness to care for caregivers of Alzheimer's disease individuals. The intervention may help reduce caregivers' anxiety and depression levels.

Needed competence for registered nurses working at a patient-centred telehealth service aimed to engage and empower people living with COPD: A five-month participatory observational study.

BACKGROUND: The global population of older aged 65 and over is increasing, which means an increase in people living with long-term health conditions and multimorbidity. Implementing new digital health technologies enables increased patient empowerment and responsibility, and the ability to respond to changes in their condition themselves, with less involvement of healthcare professionals. Important parameters need to be addressed for this digitally enabled empowerment to be successful, these include increased individual and organizational health literacy, the establishment of joint decision-making activities among patients and healthcare professionals, and efforts that target the individual's ability to manage their condition, which include education to increase skills and providing technology for self-monitoring. OBJECTIVE: To identify needed competencies of digital healthcare professionals to be able to provide the needed services to service users with chronic obstructive pulmonary disease in a 24/7 digital healthcare service. METHOD: Five registered nurses' work was observed weekly for five months. In total 13 participatory observations were conducted. Data from the observations was transcribed and analysed through inductive content analysis. RESULTS: Five main categories were identified in the analysis; 1) tasks, 2) communication, 3) the relationships between the registered nurses, 4) service users, and 5) technology. These categories contain different competencies needed for registered nurses working in a digitalized healthcare system. CONCLUSIONS: Future digital healthcare professionals will require several competencies, to be able to deliver proper care in a digital health community that goes beyond traditional healthcare competencies, including social, technological, and communication skills.

Empowering Healthcare Professionals: Exploring Experiences Leading a Violence Prevention Course for Adults With Intellectual Disability.

Violence prevention approaches using social-ecological models inform interventions for people with intellectual disability, who often face barriers to accessing generalist courses. This study explores the experiences of healthcare professionals leading a prevention course specifically designed for adults with intellectual disability. Through semistructured interviews, 12 Norwegian course leaders highlighted the importance of raising awareness and comprehension about rights, and the social and individual factors influencing experiences of violence and its prevention. Challenges were encountered in tailoring the course to the diverse lived experiences of participants with disabilities and addressing ongoing support needs for their safety. The study suggests that adopting a pedagogical or didactic model could serve as a foundation to enhance the planning and delivery of the course.

Empowering communities to use healthy lifestyle centres: an implementation research from Sri Lanka.

OBJECTIVE: Healthy lifestyle centres (HLCs), a state service that screens for major non-communicable disease (NCD) risk factors and promotes lifestyle modifications in Sri Lanka, report underutilisation. The study aimed to assess the effectiveness of a participatory intervention to empower communities in improving HLC utilisation. DESIGN: A quasi-experimental study based on the principles of community-based participatory research SETTING: Six rural communities each as the intervention (IG) (Gampaha district) and comparison (CG) groups (Kalutara district) from the capital province of Sri Lanka. PARTICIPANTS: Study population was healthy individuals aged 35-65 years, the target group of HLCs in Sri Lanka. A random sample of 498 individuals was selected from each group for evaluation. INTERVENTIONS: Community support groups (CSGs) were established and empowered using health promotion approach from August 2019 to February 2020. Group discussions and participatory mapping were conducted to identify determinants of underutilisation of HLCs, design activities to address prioritised determinants and develop indicators to monitor the progress of CSGs. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was improvement of HLC utilisation and the secondary outcome was initiation of lifestyle modifications. RESULTS: Significant improvements were seen in the IG, compared with the CG in the seven determinants that contribute to HLC utilisation. The largest differences were seen in reducing negative perceptions of susceptibility for NCDs (pre=64.7%; post=33.3%; p<0.001) and usefulness of screening (pre=66.6%; post=17.3%; p<0.001). The HLC utilisation in IG increased by 29.5% (pre=5.85%; 95% CI 3.74 to 7.95, post=35.3%; 95% CI 30.9 to 39.8, p<0.001), while the utilisation of the CG showed no difference. Furthermore, there was an improvement in the proportion of users who initiated lifestyle modification (pre=64.3%; post=89.9%; p=0.039) in IG, which was not observed in CG. CONCLUSION: HLC utilisation and initiation of lifestyle modification can be improved by a community-based health promotion intervention through empowering CSGs. TRIAL REGISTRATION NUMBER: SLCTR/2019/028.

Cross-cultural adaptation of the empowerment scale of pregnant women in China context: An integrative method of translation and linguistic validation.

AIM: To translate the Empowerment Scale for Pregnant Women (ESPW) into Chinese and to assess its linguistic validity. METHODS: The integrative method of the translation process, the Delphi technique, and cognitive interviews were used to implement cross-cultural adaptation and enhance comprehensibility and linguistic validation. This study recruited 14 experts in the expert review and cognitively reviewed 15 pregnant women. RESULTS: The two-round Delphi method created agreement on cultural applicability. The results of content validity achieved good levels: The item-level content validity index (CVI) ranged from 0.78 to 1.00, and the scale-level content validity index, calculated using two different formulas, were 0.97 and 0.81, respectively. Kappa values ranged from 0.74 to 1.00. Pregnant women could understand most of the items and response options in the cognitive interview. The revisions to the wording were made based on suggestions from experts and pregnant women. CONCLUSION: The prefinal simplified Chinese ESPW was semantically and conceptually equivalent to the English version, which was well prepared for further psychometric tests in the next stage of cross-cultural adaptation. PATIENT OR PUBLIC CONTRIBUTION: This comprehensive method successfully developed a Chinese tool to measure the empowerment of pregnant women, indicating the international applicability of this tool and the methodological scientific nature. The simplified Chinese ESPW has the potential to support the identification of empowerment levels of pregnant women and the evaluation of the effectiveness of health education and promotion programmes.

Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research.

BACKGROUND: There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients' diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients' capacity to advocate for their rights and needs. METHODS: We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations. RESULTS: Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields. CONCLUSION: PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process.

"I Know How to Get Around Your 'No'": A Follow-Up of the FACES Psychoeducational Intervention.

Black children and their families encounter systemic disadvantages in their journey to and through an autism diagnosis. Black families often experience social and systemic barriers to service use. Providing family-centered, psychoeducational interventions can reduce barriers to service access and utilization for Black families raising autistic children. Fostering Advocacy, Communication, Empowerment, and Support (FACES) has demonstrated preliminary efficacy in strengthening outcomes among Black families, yet little is known about the long-term impact of the intervention. The purpose of this qualitative interview study was to understand the experiences of FACES graduates 16 months after the intervention. Four major themes emerged: (a) strengthened advocacy, (b) strengthened empowerment, (c) systemic barriers, and (d) home and community barriers. We provide implications for research and practice.

Determinants of women's empowerment in Nepal.

INTRODUCTION: Nepal is characterized by low empowerment of women which may have negative effects on their health status as well as sexual and reproductive rights. We seek to identify key determinants of women empowerment in Nepal using a rich set of socio-demographic and socio-economic characteristics as well as behavioral factors and regional indicators. METHODS: This study utilizes 4,211 women aged between 15 and 49 years from the 2022 Demographic and Health Survey (DHS) for Nepal. Following the previous study for Mozambique, we use Principal Component Analysis (PCA) to identify components of women's empowerment along three domains: beliefs about violence, decision-making and control over sexuality and safe sex. We use logistic regressions to identify significant predictors of empowerment in each domain and provide crude and adjusted odds ratios along with their 95% confidence intervals. RESULTS: We found that older age is generally associated with higher empowerment across all these domains. Interestingly, while partner controlling behavior tended to decrease empowerment in beliefs about violence and control over sexuality, it was linked to increased decision-making empowerment. Notable regional differences emerged, with higher levels of empowerment observed in the Madhesh and Sudurpashchim regions. Further, education level and wealth were correlated with increased empowerment in control over sexuality and safe sex, though not in the other two domains. Access to media showed mixed effects, reducing empowerment in decision-making but enhancing it in control over sexuality and safe sex. CONCLUSION: Our results have many similarities but also notable differences with previous literature which emphasizes the importance of regular and region-specific studies of women's empowerment, acknowledging the potential for its change over time and also the prevailing differences across regions.

Can general exercise training and pelvic floor muscle training be used as an empowering tool among women with endometriosis? Experiences among women with endometriosis participating in the intervention group of a randomized controlled trial.

BACKGROUND: The potential benefit of exercise in alleviating symptoms of endometriosis is unclear. Still, exercise may be used to empower women and manage disease symptoms. The purpose of this study was to explore how regular supervised group- and individual exercise training, including pelvic floor muscle training (PFMT), is experienced among women with endometriosis after participating in a randomized controlled trial (RCT). METHODS: Among 41 women randomized to exercise training for four months, ten women were interviewed about their experiences with exercise training after participation in the trial. The weekly group training was led by women's health physiotherapists and included individualized and progressive muscular strength training of large muscle groups and the pelvic floor muscles, in addition to endurance-, flexibility, and relaxation training. An individual training program followed the same principles as the group training and was to be performed 3-5 times per week, depending on the level of intensity. PFMT was recommended daily. The women also received a group pain management course emphasizing exercise training as self-management. Using inductive reflexive thematic analysis, responses to the question "Did participation in the study change your view of exercise as part of the treatment for endometriosis?" were analyzed. RESULTS: The women brought forward the importance of knowledge about the benefits of exercise to make informed decisions in disease management. Further, the women described how exercise training was perceived as less frightening and manageable when exposed to various intensities, dosages, and types of exercises in a safe and supportive environment. PFMT was especially brought forward as something new and appreciated, and for some of the women, to be performed on days when their bodies could not handle the general exercise training. They also expressed that the supervised exercise brought an extra dimension of belonging through group participation. CONCLUSIONS: Individualization and regular supervision seem important to empower women with knowledge about exercise training as self-management and to experience exercise training as safe and non-threatening. Further, creating a sense of belonging through group training may improve social support and build active coping strategies that are essential for disease management of endometriosis. TRIAL REGISTRATION: NCT05091268 (registered 23.09.2021).

Using a Capability Approach to Explore How People With Intellectual Disabilities Can Lead Flourishing Lives.

BACKGROUND: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can be supported to lead flourishing lives. METHODS: Interviews and focus groups were conducted with 50 people with intellectual disabilities and 28 family carers. Data were analysed using an adapted template approach and conceptual analysis. RESULTS: Our analysis led to the identification of one overarching theme; 'Doing what you love and growing' and sub-themes; 'Choice, opportunity and empowerment', 'Being out in the world' and 'Lowered expectations and static lives'. CONCLUSION: People with intellectual disabilities can lead capability-deprived lives. Methodological and practice innovation is needed to better understand what people value and ensure they have capability sets that enable flourishing lives.

Empowering older adults: evaluating the impact of a smartphone education app on independent living.

Purpose: As science and technology advance, older people's ability to use smart devices in their daily living is becoming more demanding. This study addresses the increasing use of smartphones by the older adults, who often struggle with technology due to lack of competence. We developed an educational app tailored for older adults users and compare its effectiveness with existing educational videos. Methods: An app was created based on the learning characteristics of the older adults, using the ADDIE model, and compared with traditional video education. It involved six participants aged 65 or older, and convenience sampling method was used, evaluating the app and video through usability assessments and eye tracking. Quantitative and qualitative analyzes were conducted with focus groups under the researcher's control. Results: The app received higher usability scores than the video in content, motivation, and interaction. Eye tracking showed users paid more consistent attention to the app. Conclusion: The smartphone app facilitates learning for the older adults without the constraints of time and place, improving their quality of life and technology skills. Eye tracking can be instrumental in future app development for this demographic.