The care of non-institutionalized ADL-dependent people in the Orcasitas neighborhood of Madrid (Spain) during the Covid-19 pandemic and its relationship with social inequalities, intergenerational dependency and survival.

Background: Mortality among people with dependency to perform basic activities of daily living (ADL) is higher than that of non-dependent people of the same age. Understanding the evolutionary course and factors involved in non-institutionalized ADL dependency, including the influence of the family structure that supports this population, would contribute to improved health planning. Methods: A longitudinal study carried out in the ADL-dependent population of the Orcasitas neighborhood, Madrid (Spain), between June 2020, when the nationwide COVID-19 lockdown ended, and June 2023. A total of 127 patients participated in the study, 78.7% of whom were women and 21.3% were men. Risk analysis was performed via odds ratios (OR) and hazard ratios (HR). Survival analysis was performed using Cox regression. Results: A total of 54.33% of the ADL-dependent persons did not live with their adult children and 45.67% did, being associated living independently with economic capacity and the married marital status but not with the dependency level. In women, being married increased the probability of living independently of their adult children (OR = 12.632; 95% CI = 3.312-48.178). Loss of mobility (OR = 0.398; 95% CI = 0.186-0.853), economic capacity of the dependent (HR = 0.596; 95% CI = 0.459-0.774), and living independently and having better economic capacity (HR = 0.471; 95% CI = 0.234-0.935) were associated with 3-year survival. Those who lived with their adult children had a worse autonomy profile and higher mortality (HR = 1.473; 95% CI = 1.072-2.024). Not being employed, not being married, and not owning a home were significantly associated with being an essential family caregiver. Caregivers were mostly women (OR = 1.794; 95% CI = 1.011-3.182). Conclusion: Among ADL-dependent persons, economic capacity influenced the ability to living independently and affected survival after 3 years. Loss of mobility (wheelchair use) was a predictor of mortality. Social inequalities promote that adult children end up as essential family caregivers. This generates reverse dependency and maintains a vulnerability that is transmitted from generation to generation, perpetuating social and gender inequalities. Dependent parent care in this cohort maintained an archaic pattern in which the eldest daughter cared for her parents. This study made it possible to show that ADL dependence is accompanied by complex interrelationships that must be considered in socio-health planning.

Optimizing ChatGPT's Interpretation and Reporting of Delirium Assessment Outcomes: Exploratory Study.

BACKGROUND: Generative artificial intelligence (AI) and large language models, such as OpenAI's ChatGPT, have shown promising potential in supporting medical education and clinical decision-making, given their vast knowledge base and natural language processing capabilities. As a general purpose AI system, ChatGPT can complete a wide range of tasks, including differential diagnosis without additional training. However, the specific application of ChatGPT in learning and applying a series of specialized, context-specific tasks mimicking the workflow of a human assessor, such as administering a standardized assessment questionnaire, followed by inputting assessment results in a standardized form, and interpretating assessment results strictly following credible, published scoring criteria, have not been thoroughly studied. OBJECTIVE: This exploratory study aims to evaluate and optimize ChatGPT's capabilities in administering and interpreting the Sour Seven Questionnaire, an informant-based delirium assessment tool. Specifically, the objectives were to train ChatGPT-3.5 and ChatGPT-4 to understand and correctly apply the Sour Seven Questionnaire to clinical vignettes using prompt engineering, assess the performance of these AI models in identifying and scoring delirium symptoms against scores from human experts, and refine and enhance the models' interpretation and reporting accuracy through iterative prompt optimization. METHODS: We used prompt engineering to train ChatGPT-3.5 and ChatGPT-4 models on the Sour Seven Questionnaire, a tool for assessing delirium through caregiver input. Prompt engineering is a methodology used to enhance the AI's processing of inputs by meticulously structuring the prompts to improve accuracy and consistency in outputs. In this study, prompt engineering involved creating specific, structured commands that guided the AI models in understanding and applying the assessment tool's criteria accurately to clinical vignettes. This approach also included designing prompts to explicitly instruct the AI on how to format its responses, ensuring they were consistent with clinical documentation standards. RESULTS: Both ChatGPT models demonstrated promising proficiency in applying the Sour Seven Questionnaire to the vignettes, despite initial inconsistencies and errors. Performance notably improved through iterative prompt engineering, enhancing the models' capacity to detect delirium symptoms and assign scores. Prompt optimizations included adjusting the scoring methodology to accept only definitive "Yes" or "No" responses, revising the evaluation prompt to mandate responses in a tabular format, and guiding the models to adhere to the 2 recommended actions specified in the Sour Seven Questionnaire. CONCLUSIONS: Our findings provide preliminary evidence supporting the potential utility of AI models such as ChatGPT in administering standardized clinical assessment tools. The results highlight the significance of context-specific training and prompt engineering in harnessing the full potential of these AI models for health care applications. Despite the encouraging results, broader generalizability and further validation in real-world settings warrant additional research.

[The place of privacy in the caregiver-caregiver relationship: a descriptive exploratory study]. / La place du respect de l'intimité dans la relation soignant-soignée : une étude exploratoire descriptive.

During care, privacy is subject to physical or moral disrespect. This crucial right of the patient is increasingly neglected in the care-giver-patient relationship. However, it is observed that this is linked to soft skills, and that the majority of healthcare professionals have only one objective, which is the mastery of technical skills. The aim of the present study is to explore and describe in depth the place of respect for privacy in the care-giver-patient relationship in the maternity department of a provincial hospital in Casablanca-Settat region, in Morocco.

[Diabetes, loved ones: Constraints, support, shared experiences]. / Le diabète et les proches, entre contraintes, soutien et vécus en commun.

Diabetes is a pathology that has major consequences not only for those who suffer from it, but also for those around them. Relatives can play different roles in this respect, depending on the type of relationship they have with the person with diabetes. The onset of the disease is likely to modify pre-established roles within social groups such as the family sphere, with the possibility of strengthening ties, but also of damaging them.

Quality of Caregiver-Adolescent Relationship on HIV, Herpes Simplex Virus Type-2, and on Pregnancy Among Young Women in South Africa Enrolled in HIV Prevention Trials Network 068.

PURPOSE: Adolescent girls and young women (AGYW) are at an increased risk of acquiring HIV and HSV-2, and unintended pregnancies are high in AGYW. Despite the protective impact of caregiver-adolescent relationships on risk behaviors, less attention has been paid to the association of these relationships and sexually transmitted infections (STIs) and pregnancy. METHODS: We used longitudinal data from HIV Prevention Trial Network 068, which was conducted among 2,533 AGYW (13 - 20 years) over 5 years in Agincourt, South Africa. Kaplan-Meier and Cox models were used to estimate the effect of quality of caregiver-adolescent relationships (caring and closeness) on STIs and pregnancy. Also, we assessed effect measure modification by age (14-19 vs. 20-25 years) for STI risk using stratum-specific estimates and likelihood ratio tests, with a p value <.1 indicative of effect measure modification. RESULTS: There were no significant differences in the hazard of HIV by our exposures (caring: hazard ratio (HR): 1.03, 95% CI: 0.75, 1.42; closeness: HR: 0.80, 95% CI: 0.57, 1.11). Among 14-19-year-olds, those who reported caregiver caring were less likely to acquire HSV-2 (HR: 0.69, 95% CI: 0.51, 0.94, likelihood ratio tests= 3.89, p-value = .0487), in contrast, there were no significant differences among 20 - 25-year-olds. AGYW who reported high-quality relationships had a lower hazard of pregnancy incidence (caring: HR: 0.79, 95% CI: 0.68, 0.93; closeness: HR: 0.76; 95% CI: 0.64, 0.91). DISCUSSION: Positive caregiver-adolescent relationships are associated with reduced risk of HSV-2 among younger AGYW and pregnancy incidence.

Burden, Anxiety, and Depression Among Caregivers of Parkinson's Disease Patients.

Background: Parkinson's disease (PD) is a disabling neurodegenerative movement disorder. Most PD patients are looked after by caregivers who are close to them regardless of their relationship. Caregivers may experience a notable impact on their mental health as they dedicate a significant amount of time to the patient while observing the progression of the disease. Objective: The aim of this study was to evaluate the level of burden, depression, anxiety, and stress among caregivers of PD patients. Methods: We conducted a cross-sectional analysis between July and September 2023 among caregivers of PD patients following in the Movement Disorders Clinic at King Khalid University Hospital in Riyadh, Saudi Arabia, and through the Saudi Parkinson's Society. The data collection was done anonymously through an electronic self-administered questionnaire. Caregiver burden was assessed by using the validated Arabic version of the Zarit Burden Interview (ZBI) scale, and the Depression Anxiety Stress Scale (DASS) was used to assess the presence and level of anxiety and depression. Results: There were 118 caregivers (53.39% female, 33.9% aged between 35- 45 years, and 73.73% were sons/daughters) caring for 118 patients (57.63% , male, 38.98% aged between 66- 76). The ZBI score was highest among sibling caregivers. Moreover, burden scores were higher among those who provided care more frequently than others. Conclusions: Our study revealed that PD caregivers face a high risk of care burden, especially those who are siblings and spend longer periods in patient care. Additionally, female caregivers reported higher rates of depression, anxiety, and stress. Plain Language Summary: Parkinson's disease (PD) is a serious condition that affects movement, and most PD patients are cared for by someone close to them, such as a family member. This caregiving can significantly impact the mental health of the caregiver, who often spends a lot of time caring for the patient and witnessing the disease's progression. We studied caregivers of PD patients at the Movement Disorders Clinic at King Khalid University Hospital and through the Saudi Parkinson's Society from July to September 2023. Caregivers completed an anonymous electronic questionnaire, and we measured caregiver burden using the Zarit Burden Interview (ZBI) and assessed anxiety and depression using the Depression Anxiety Stress Scale (DASS). Our study included 118 caregivers (53.39% female, most aged 35- 45 years, and 73.73% were sons or daughters) caring for 118 PD patients (57.63% male, most aged 66- 76 years). Caregivers who were siblings or cared for the patient daily had higher burden scores, and female caregivers had higher levels of depression, anxiety, and stress compared to males. Our study revealed that PD caregivers face a high risk of care burden, especially those who are siblings and spend longer periods in patient care, and that female caregivers exhibited an elevated risk of experiencing depression, anxiety, or stress.

Cultivating the imagination: Caregiver input during pretend play with toddlers at elevated likelihood for autism.

Toddlers with autism spectrum disorder (ASD) may exhibit less pretend play than their neurotypical counterparts. Previous research suggests that caregivers' input during play influences children's play behavior, and children's behavior may in turn prompt caregivers of differently developing children to talk about play in different ways. Caregiver input about pretend play during toy play at home was examined at 18- and 36-months in toddlers with an older sibling with ASD, who are at elevated likelihood (EL) for ASD (n = 40), and toddlers with typical likelihood (TL) for ASD (n = 12). EL toddlers were classified into three outcome groups: EL-ASD (n = 10), EL-no diagnosis (EL-ND; n = 14), or EL-language delays (EL-LD, n = 16). Caregiver utterances were categorized according to the types of pretend and non-pretend play suggested (e.g., pretending with inanimate objects vs. using objects for their intended function). Pretend utterances were further categorized as related or unrelated to the child's own actions. All caregivers produced proportionately more utterances about complex types of pretend play over time. At 36 months, caregivers of autistic toddlers produced proportionately fewer pretend play utterances, and proportionately fewer pretend play utterances were related to EL-ASD toddlers' actions compared to their neurotypical peers. These findings highlight bidirectional effects between caregivers and toddlers during play. While EL-ASD toddlers may provide less frequent opportunities for caregivers to talk about complex types of pretend play, the current study highlights caregivers' high levels of attunement to their toddlers' play skills.

Factors associated with caregiver strain among mothers and fathers of children with advanced cancer.

OBJECTIVES: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.e., family roles, social support) associated with caregiver strain. METHODS: Families of children (ages 5-25) with advanced cancer (i.e., physician-estimated prognosis < 60%, relapsed/refractory disease) were recruited from a large children's hospital. Mothers (n = 55; 87% White) and fathers (n = 30; 83% White) reported on their caregiver strain, cancer-specific stress, general stress, social support, division of 7 family roles (e.g., medical care of ill child, household chores), and their satisfaction with each role. RESULTS: Parents reported moderate caregiver strain, cancer-specific stress, and general stress, and high social support and satisfaction with family roles. Fathers reported family roles were shared equally, whereas mothers reported either sharing roles or completing them independently. When accounting for income and partnership status, greater caregiver strain for mothers was associated with greater general stress, greater satisfaction with family roles, and lower social support. For fathers, greater caregiver strain was associated only with greater cancer-specific stress. SIGNIFICANCE OF RESULTS: In the context of advanced pediatric cancer, fathers may experience caregiver strain as cancer-specific stress increases, whereas mothers' strain may depend on broader family and social factors. Psychosocial providers should address general and cancer-specific stress within families, and provide resources for enhancing mothers' social support. Additional research is needed with larger, more diverse samples to inform future intervention approaches.

Battling Alone on Multiple Fronts - How Gender Norms Affect the Soldiers' Wife as Caregiver in India.

Objectives: Women form the backbone of caregiving in palliative home care throughout the world. They put in more intense care for longer hours, perform more intimate tasks, and face more physical and mental strain, comorbidities, anxiety, and depression. However, gender norms that perceive caregiving as a natural part of femininity dismiss this as part of their duty toward their family, thus making their care work invisible, taken for granted, and devalued. This results in women bearing more burden with less support and no appreciation and suffering more negative mental and physical health outcomes than men. Globally, women perform 76.2% of unpaid care work. India ranks a dismal - 135 out of 146 countries in the 2022 Gender Gap report. Less than 10% of Indian men participate in household work. Women in rural India continue to be less educated; the majority are not allowed to travel alone and are culturally not involved in decision-making, which is done by the males. Wives of armed forces personnel are forced to live without their husbands for long periods. This leads to even more challenges when they also need to take care of patients with life-limiting illnesses. No study has been done on this population till now. This study aimed to explore the experiences of the women in armed forces families, caring at home for patients with palliative needs. Materials and Methods: This was a qualitative study based on a thematic analysis of semi-structured interviews with adult caregivers - either serving personnel or their dependent family members. Results: Female relatives were the main caregivers in 13 cases; the majority belonged to rural areas, were between 22 and 47 years of age, most were married, had young children, and reported health issues of their own. Major themes that emerged include lack of information, the expectation of being a caregiver irrespective of ability/needs, physical and psychological burden, neglected emotional needs, difficulty in traveling alone, social isolation, loss of employment with the financial burden, stigmatisation and ill-treatment of widows by in-laws. Conclusion: 'Soldier's wives, who must stay alone, face increased burdens as they face not only the physical and emotional burden of caregiving but also the additional challenges of living alone, mostly in rural Indian society, where gender norms are still deeply ingrained. Creating awareness about this vulnerable community among palliative care providers is required to improve services for them. There is also an urgent need for identifying, challenging, and addressing stereotyped roles and disparities in healthcare systems, practices, care goals, and policies by sensitising staff, educating families, developing gender-sensitive resources and support systems, initiating care discussions, and undertaking more gender-related research.

Quality of Life, Coping Strategies, and Psychosocial Support Status of Caregivers Having Children With Neurodevelopmental Disabilities: A Cross-Sectional Study From Bangladesh.

Background Although caregiving is considered a normal phenomenon for parents, delivering care to a child with neurodevelopmental disabilities can be taxing and disastrously impact parents' quality of life (QoL). This study explored the relationship between QoL, coping strategies, and psychosocial support status of caregivers of children with neurodevelopmental disabilities. Methodology This cross-sectional study included 906 caregivers of children having neurodevelopmental disabilities utilizing the World Health Organization Quality of Life Brief and Perceived Stress Scale. A tailored questionnaire gauged coping strategies and psychosocial support. Linear regression was used to identify significant contributors. Results Most caregivers (78.8%) experienced a moderate level of stress, and their QoL scores were 14.4 (SD = 2.5) for physical health, 12.0 (SD = 2.4) for psychological health, 14.6 (SD = 1.9) for social relationships, and 12.1 (SD = 2.1) for the environment. Mothers had the lowest QoL of all caregivers. Negative influences on QoL encompassed caregiver and child age, perceived stress, and lower socioeconomic status. A higher coping score positively predicted a high health-related QoL score. Gender differences were observed in psychosocial support sources. Conclusions The study underscores the need for policymaking considering findings to develop psychosocial intervention programs for enhancing the QoL of caregivers of children with neurodevelopmental disabilities.

Predictors of depression among caregivers of patients with severe mental illness in Northwest Ethiopia, 2023: an explanatory sequential mixed-method study.

Background: Severe mental illness results in an enormous social and economic burden on affected individuals, their families, and communities, especially in developing countries, such as Ethiopia. Objective: The aim of this study was to assess the level of depression among caregivers of patients with severe mental illness in Debre Tabor Town, Northwest Ethiopia in 2023. Methods: This institution-based explanatory mixed study was conducted at Debre Tabor Compressive Specialized Hospitals between September 30 to October 30, 2023. A systematic random sampling technique was used to select 260 study participants, and a public health questionnaire was used to assess depression. Epicollect5 was used to collect data, which were then exported to the SPSS-25 for analysis. Variables with a p-value <0.25 were considered candidates for the multivariate logistic regression analysis. The odds ratios with a 95% confidence interval were used to determine the strength of the association. An in-depth interview was conducted with 11 participants, selected using purposive sampling. Results: The prevalence of depression was 31.3% (95% CI = 29.7-38.6). The multivariate analysis showed that being female (AOD = 2.43, CI = 1.42-7.23), divorced/widowed (AOD = 1.8, CI = 1.32-6.34), poor social support (AOD = 2.2, CI = 1.9-5.87), and perceived stigma (AOD = 2.33, CI = 0.24-13.22) were positively associated with depression. The qualitative results suggest that being female, illiterate, severity of the illness, poor social support, and stigma were factors for depression. Conclusions and recommendations: The prevalence of depression was high among caregivers of patients with severe mental illness. Female sex, being divorced or widowed, being illiterate, poor social support, and perceived stigma were the contributing factors. This implies that a greater focus on caregivers and the government increases mental health literacy and mental health community services.

Randomized Trial to Evaluate Effects of Peer- and Clinician-Led Interventions for Caregivers of Individuals With Acquired Brain Injury.

Objective: To evaluate the effectiveness of 2 interventions for caregivers of patients with acquired brain injury (ABI) transitioning home after inpatient rehabilitation, to prepare them for the role of caregiving and reduce stress and depression. Design: Controlled trial with participants randomly assigned to (1) usual care (UC), (2) clinician-delivered Problem-Solving Training (PST), or (3) peer-led Building Better Caregivers (BBC) training; both experimental interventions initiated during the inpatient rehabilitation stay, delivered virtually, of similar intensity (six 60-minute sessions), and focused on managing stress and building skills related to caregiving. Setting: Nonprofit rehabilitation hospital specializing in care of persons with acquired brain and spinal cord injuries. Participants: Caregivers (n=169) of patients with ABI (54 stroke; 115 other ABI) admitted for rehabilitation whose discharge location was home with care provided by family members (caregivers: 83% women, 62% White, age [mean ± SD]: 51±11.5 y). Participants were recruited from February 2021 to November 2022, when COVID-19 restrictions were in place. Interventions: Noted above. Main Outcome Measures: Caregiver-reported stress, depressive symptoms, and caregiving self-efficacy; patient unplanned hospital readmissions and emergency department visits 30 days post discharge. Results: Only 61% of participants in the 2 intervention groups completed 3 or more of 6 intervention sessions and only 53% completed all data collection surveys. Statistically significant improvements between UC and PST groups were noted for caregiver stress (p=.039). Positive differences in caregiver self-efficacy found between UC and the BBC intervention groups approached significance at 30 days after discharge (p=.054). Patient unplanned hospital readmissions and days hospitalized were also higher, albeit not statistically significant, for UC participants than both intervention groups. Conclusions: Although positive findings were noted, results were negatively affected by study limitations including low enrollment and limited engagement (intervention completion and follow-up outcomes assessment). These limitations resulted, in part, from restrictions put into place during the COVID-19 pandemic, which limited contact with study participants and required alterations to the BBC intervention likely influencing its effectiveness. Despite limitations noted, the encouraging findings suggest the need for further research.

Barriers and Facilitators to the Applicability of Adult Daycare Centers in Saudi Arabia: A Qualitative Study.

Adult daycare centers (ADCs) enable older adults to socialize and enjoy planned group activities while receiving healthcare services. These centers also assist caregivers by empowering them to remain in the workforce. This study aims to explore the challenges in establishing ADCs in Saudi Arabia (SA) from the perspectives of healthcare professionals, healthcare policymakers, older adults, and caregivers. Additionally, this study's objective is to identify the barriers, facilitators, and applicability of ADCs in SA. A qualitative study was conducted using semi-structured individual interviews. Inductive and deductive thematic analyses were employed to identify common themes regarding the barriers and facilitators to the applicability of ADCs in SA. Five researchers independently examined the transcripts using inductive analysis. Deductive analysis mapped the themes to Campinha-Bacote's cultural competence model. Data were collected from 46 participants, including caregivers, older adults, healthcare professionals, and healthcare policymakers. The findings highlight that the main facilitators to establishing ADCs in SA are the expected positive impact on the psychological and physical well-being of older adults and their caregivers. Conversely, cost and transportation, in addition to cultural considerations are possible barriers. This study identified the perceived benefits of ADCs for older adults and caregivers from a Saudi societal perspective. Thematic analysis showed that ADC's applicability in SA is possible, with some modifications to fit within the Saudi context. Additional efforts are necessary to promote the concepts and services that ADCs provide for older adults and to encourage support for these centers by non-profit organizations and the government.

The influence of assistance in home-based exercise programmes for individuals with intellectual disabilities.

BACKGROUND: Regular physical activity (PA) decreases the risk of comorbidities associated with a sedentary lifestyle in individuals with intellectual disabilities (IDs). They also may experience additional barriers that may prevent PA, including access, proper instruction and support. At-home PA programming is a feasible alternative to long-term adherence. This study aimed to determine (1) how an at-home DVD programme affects PA adherence and (2) the extent to which caregiver support influences PA. METHODS: Thirty-one adolescent or adult-aged participants with mild or moderate ID were randomised into a DVD or control group exercise intervention. Participants were given autonomy to choose what type of PA modality from the intervention they would like to participate in. Caregiver support during the PA was also measured. RESULTS: The two-way repeated-measures MANOVA demonstrated that the intervention DVD group was statistically significant, with a large effect size in PA minutes (P = 0.014, ηP2 = 0.236) and rate of perceived exertion (P = 0.002, ηP2 = 0.342) compared with the control group. CONCLUSIONS: The findings demonstrated that using an adapted DVD increased PA minutes and the rate of perceived exertion without high levels of caregiver support.

Social and leisure engagement moderates the association between care partner distress and cognitive status of care recipients with dementia.

OBJECTIVES: Despite the established impact of care recipient cognitive impairment on care partner (CP) distress, limited quantitative research has explored how social and leisure engagement may moderate this relationship, offering a potential avenue for enhancing well-being in both care partners and recipients. The current study therefore examined the between- and within-dyad associations between cognitive impairment of persons with dementia (PwD) and their family CP's distress, and whether social and leisure activity moderated this relationship. METHODS: Data were utilized from dyads (PwD, n = 33, and their CPs, n = 34) engaged in the Voices in Motion project, a social-cognitive choral intervention for PwD and their family CPs. Measures indexing PwD cognitive status, CP distress, and PwD and CP social and leisure engagement were assessed using an intensive repeated-measures burst design, with multilevel models of change employed to disaggregate between- and within-person effects. RESULTS: Diminished cognitive functioning in PwD was associated with increased CP distress (p < 0.01) between-dyads; however, this relationship was not significant within-dyads. The between-dyad association was significantly moderated by the extent of social and leisure engagement of both CPs (p < .001) and PwD (p = .04). Follow-up simple slopes demonstrated that, at mean- and high-levels (+1SD) of social and leisure engagement for PwD and/or CP, increased PwD cognitive function significantly predicted lower CP distress. CONCLUSION: The significant moderating influence of social and leisure engagement of dyads underscores the protective role of such engagement for reducing care-related distress. Activity engagement for CPs and PwD may help modulate the deleterious impact of PwD cognitive impairment and attenuate CP distress. These findings highlight the potential for dyadic interventions that promote social and leisure activities to mitigate caregiving challenges and enhance quality of life for both CPs and PwD.

Social media and caregivers' well-being: A scoping review and future research directions.

Caregivers' well-being has become a major social concern, given the growing demand for long-term care support to meet the challenges of an aging society. As social media becomes substantially pervasive in daily life, the impacts of social media on caregivers' well-being are increasingly gaining public attention. Although research activities are active, studies on social media and caregivers' well-being lack consolidation and receive limited attention from researchers. To bridge the gaps, this study aims to consolidate the existing knowledge through a scoping review (with four databases: PubMed, Web of Science, Scopus, and CINAHL) and call for research on caregivers from the perspective of social media and well-being. Review results from forty eligible papers indicate that impacts of social media use on caregivers' well-being are not always positive, which encourages future research to provide more understanding of how to achieve positive effects and avoid adverse effects simultaneously. We also further discuss the findings and suggest future investigation opportunities.

'It opens up a whole new world for everybody': how carers of people with dementia view the online empowered conversations communication course.

OBJECTIVES: This paper explores (1) experiences of participating in Empowered Conversations, an online communication course for carers of people with dementia and (2) how participants felt the course had changed their experience of caring. METHOD: Fifteen semi-structured interviews were completed with carers who had attended Empowered Conversations as part of a larger feasibility trial conducted in Greater Manchester, UK (ISRCTN15261686). Data were analysed using applied thematic analysis. RESULTS: Three themes were developed: (1) You've got nothing to lose and everything to gain, including the course content, timing and format, and perceived burden and benefits of the course; (2). A community to share together, including the value of being honest, vulnerable, and sharing stories; and (3) Being given a new way to see the world, including understanding the person and their diagnosis, enabling greater control and reducing interpersonal conflict, and recalibrating their expectations. CONCLUSION: Carers reported positive experiences of participating in Empowered Conversations and valued meeting people who, despite different circumstances, shared their understanding of supporting someone with dementia. The course supported participants to be honest and vulnerable, and helped them to rethink communication and have a greater appreciation of the other person's perspective during everyday interactions.

Intervention for the Management of Neuropsychiatric Symptoms to Reduce Caregiver Stress: Protocol for the Mindful and Self-Compassion Care Intervention for Caregivers of Persons Living With Dementia.

BACKGROUND: Stress related to Alzheimer disease and related dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress. OBJECTIVE: In this study, we aimed to describe the development of the Mindful and Self-Compassionate Care (MASC) program, the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL) study. METHODS: Using the National Institutes of Health (NIH) stage model, we describe 3 phases of work encompassing NIH Stages 1A and 1B. In phase 1, we conducted 5 focus groups (N=28) of stressed individuals caring for persons with ADRD and challenging behaviors. Rapid data analysis informed the development of a 6-week online intervention. Phase 2 (NIH stage 1A) includes an open pilot (N>10) with optional exit interviews. Phase 3 (NIH stage 1B) is a feasibility randomized controlled trial of the intervention versus the Health Education Program control. Primary outcomes focus on feasibility with secondary outcomes encompassing acceptability, credibility, fidelity, and signals of preliminary efficacy. Phase 1 follows traditional recommendations for qualitative analyses (at the point of thematic saturation) which was achieved after 5 focus groups (N=28). For the phase 2 open pilot, up to 12 participants will be recruited. For the phase 3 feasibility study, recruitment of 80 caregivers will allow the assessment of feasibility benchmarks. Data for phase 1 included 5 focus groups. In phases 2 and 3, data collection will occur through REDCap (Research Electronic Data Capture; Vanderbilt University) surveys and an optional qualitative exit interview. Analyses will include hybrid inductive-deductive analyses for qualitative data and assessment of changes in our intervention targets and outcomes using t tests and correlation analyses. RESULTS: In phase 1, caregivers reported interest in a brief, online stress management program. Participants held misconceptions about mindfulness and self-compassion, but after detailed explanation thoughts, these skills could be helpful when directly linked to implementation during caregiving routines. Phases 2 and 3 will be completed by the end of 2025. CONCLUSIONS: We describe the protocol for the Supporting Our Caregivers in ADRD Learning study, as well as the development and feasibility testing of the Mindful and Self-Compassionate Care intervention. Future work will include a fully powered efficacy-effectiveness randomized controlled trial. TRIAL REGISTRATION: ClinicalTrials NCT05847153; https://clinicaltrials.gov/study/NCT05847153; and ClinicalTrials.gov NCT06276023; https://clinicaltrials.gov/study/NCT06276023. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/58356.

Design, Implementation and Evaluation of a Health Promotion Program for Family Caregivers of Chronic Mental Disorders: A Mixed Methods Study.

Family caregivers of patients with chronic mental disorders who are responsible for taking care of the patient face many problems that can endanger the psychosocial health of these people. This study was conducted to develop, implement, and evaluate a psychosocial health promotion program for family caregivers of patients with chronic mental disorders. This research is an exploratory sequential mixed-method study conducted using a qualitative-quantitative design. A qualitative study was conducted to explain the needs and psychosocial problems and the solution to improve the psychosocial health of family caregivers of patients with chronic mental disorders in two psychiatric care centers in Isfahan were conducted. Then the program was written based on Kern's programming development approach. In the quantitative stage, a part of the developed program was implemented as virtual group psychoeducation for 67 caregivers, and its impact on caregivers' burden of care was evaluated. The findings from the qualitative phase of the study led to the emergence of 3 main categories and the findings from the quantitative phase of the study indicated that the implementation of the compiled program causes a significant reduction in the burden of care in family caregivers of chronically mentally ill patients (p<0.05). The current program was prepared and developed using an evidence-based approach. Policymakers and members of the mental health team can take a valuable step toward reducing the care burden of family caregivers of chronic mental patients by using the content of the developed mental health promotion program.

Quality of Life and Outcomes Associated with Adverse Effects in Pediatric Patients with Attention-Deficit/Hyperactivity Disorder and Their Parents/Caregivers.

Objectives: To assess quality of life and outcomes associated with adverse effects (AEs) in pediatric patients receiving pharmacological treatment for attention-deficit/hyperactivity disorder (ADHD) and their parents/caregivers. Methods: An online survey was conducted (10/13/2023-10/20/2023) among parents/caregivers recruited from Dynata's U.S. panel who lived with a pediatric patient (6-17 years) currently treated for ADHD. Patient and parent/caregiver characteristics and outcomes were descriptively reported. Patients were considered to have AEs if they experienced symptoms/complications in the past 30 days that appeared, worsened, or remained unchanged after initiating their latest ADHD treatment. Regression analyses were used to estimate correlations between the number of AEs and key outcomes, including patients' health-related quality of life (HRQoL; based on the Pediatric Quality of Life Inventory) and parents/caregivers' work and activity impairments (based on Work Productivity and Activity Impairment: Caregiver) and mental health (based on Patient Health Questionnaire-4). Results: A total of 401 parents/caregivers from all U.S. regions completed the survey (caregiver median age: 38 years, 58.9% female; patient median age: 11 years; 37.7% female). In the 30 days prior to data collection, 66.8% of patients had AEs (overall mean: 1.2 AEs), with insomnia/sleep disturbances and decreased appetite/weight loss being the most frequently reported (14.2% and 11.7%, respectively). The number of AEs was significantly correlated with reduced patient's HRQoL (including reduced physical, emotional, and school functioning), increased parent/caregiver's work and activity impairment, and a higher likelihood of parents/caregivers having generalized anxiety disorder or major depressive disorder, respectively (all p < 0.001). Conclusions: AEs are common among pediatric patients receiving pharmacological treatment for ADHD and are associated with poorer quality of life and outcomes in pediatric patients and their parents/caregivers. Therapies with better safety profiles may help improve patient's HRQoL and parent/caregiver outcomes.