Understanding facilitators and barriers to oxygen therapy for patients with interstitial lung disease.

BACKGROUND: Interstitial lung disease (ILD) is comprised of a heterogeneous group of pulmonary diseases. Oxygen therapy is used in patients with advanced lung disease; however, there are challenges associated with initiation of oxygen therapy specific to individuals with ILD. The key objectives of this study were to create a common understanding of the facilitators and barriers to oxygen therapy for patients with ILD, and healthcare professionals (HCP) caring for patients with ILD. METHODS: This qualitative study included 1 hour semistructured focus groups/interviews. An iterative and concurrent process was used for data collection and analysis to allow for supplementary development of themes and concepts generated. Data analysis used a three-phase approach: coding, categorising and development of themes. RESULTS: A total of 20 patients and/or caregivers and 31 HCP took part in 34 focus groups/interviews held over 3 months (November 2022-January 2023). Facilitators to oxygen therapy were identified including support from HCP and support groups, the perseverance and self-advocacy of patients, a straightforward administrative process and vendors/private industry that expedite access to oxygen therapy. There were also several barriers to accessing oxygen therapy for patients with ILD. The themes identified include rural disparity, testing requirements and qualifying for funding and the need for ILD-specific evidence base for oxygen therapy. CONCLUSION: Further research is needed to facilitate development of specific exertional oxygen criteria for patients with ILD, to create supports for oxygen use and monitoring and to enable providers to tailor therapy to patients. Oxygen therapy education for ILD should address the benefits and risks of oxygen therapy.

[Current Situation and Influencing Factors of Caregivers' Pressuring Feeding Style in Infants of 6-11 Months Old in Rural Areas of Sichuan Province].

Objective To investigate the status and influencing factors of pressuring feeding style among caregivers in remote rural areas of Sichuan province. Methods Multistage sampling was conducted to select infants of 6-11 months old who had received complementary food and their caregivers in remote rural areas of Sichuan province.A questionnaire was used to collect sociodemographic characteristics of infants and their caregivers,pressuring feeding behaviors,feeding environment,and caregivers' negative emotions.Quantile regression was employed to analyze the factors influencing pressuring feeding among caregivers of infants. Results A total of 1358 pairs of infants and their caregivers were included,with the pressuring feeding behavior score of 11 (8,14).Parity was the protective factor for caregivers' pressuring feeding (ß25=-1.17,P<0.001;ß50=-1.40,P=0.002;ß75=-2.18,P<0.001).Whether infants played with toys while eating (ß25=1.00,P<0.001;ß50=1.20,P=0.003;ß75=1.42,P<0.001) and whether infants watched TV/mobile phones (ß25=0.50,P=0.048;ß50=1.07,P=0.004) were the risk factors.At the 75th percentile,caregivers' negative emotions were the risk factor for pressuring feeding (ß75=0.94,P=0.015).Caregivers' education background (ß25=0.83,P=0.034;ß50=0.87,P=0.021) and family income (ß75=1.09,P=0.012) were also significantly associated with pressuring feeding scores at different quartile points. Conclusion Pressuring feeding behaviors of caregivers in remote rural areas of Sichuan province need to be improved.Based on the characteristics of infants and their families,guidance should be carried out to improve the feeding environment and the mental health of caregivers,thereby promoting reasonable feeding behaviors among caregivers of infants in rural areas.

Key needs, quality performance indicators and outcomes for patients with atrial fibrillation and multimorbidity: The AFFIRMO study.

BACKGROUND: Patients with atrial fibrillation (AF) often have concomitant long-term conditions that negatively impact their quality of life and the clinical management they receive. The AFFIRMO study aimed to identify the needs, quality performance indicators (QPIs), and outcomes relevant to patients, caregivers and healthcare professionals (HCPs) to improve the care of patients with AF. METHODS: An on-line survey to collect the key needs, QPIs, and outcomes relevant to patients with AF, their caregivers and HCPs, was distributed between May 2022 and January 2023 in five countries (UK, Italy, Denmark, Romania and Spain). Results from the on-line survey were discussed in a three-round Delphi process with international representatives of patients with AF, caregivers, and HCPs to determine the key needs, QPIs and outcomes for the management of patients with AF and multimorbidity. RESULTS: 659 patients (47.2% males, mean (SD) age 70.9 (10.2) years), 201 caregivers (26.9% males, mean (SD) age: 58.3 (SD 15.2) years), and 445 HCPs (57.8% males, mean (SD) age 47.4 (10.6) years) participated in the survey. An initial list of 27 needs, 9 QPIs, and 17 outcomes were identified. Eight patients, two caregivers, and 11 HCPs participated in the Delphi process. Nineteen (70%) needs, 8 (89%) QPIs, and 13 (76%) outcomes reached "consensus in", and were included in the final list. CONCLUSIONS: The final key needs, QPIs and outcomes obtained from the Delphi process will inform the AFFIRMO clinical trial, which aims to test the iABC app which incorporates an empowerment toolbox for patients and their caregivers, providing information to improve patient engagement and empowerment to help improve the clinical and self-management of patients with AF in the context of multimorbidity.

Effectiveness of an mHealth App That Uses Financial Incentives and Gamification to Promote Health Behavior Change in Adolescents and Caregivers: Protocol for a Clinic-Based Randomized Controlled Trial.

BACKGROUND: Adolescent and adult obesity continues to be a public health epidemic in the United States. Despite the popularity of mHealth apps with gamification among adolescents, there are insufficient studies to evaluate the efficacy of gamified mHealth apps and financial incentives to motivate sustained health behavior change in adolescents or their adult caregivers. OBJECTIVE: This study aims to evaluate the effectiveness of gamification techniques and financial incentives used in the novel "CommitFit" mHealth app to motivate health behavior change and improve various mental and physical health metrics in adolescents and their caregivers. METHODS: This study is a 3-month randomized controlled trial (RCT) with 30 adolescents (aged 13-15 years) and their adult caregivers (N=60). It evaluates "CommitFit," which uses gamification including points and leaderboards to motivate logging and achievement of self-selected health behavior goals (eg, more water, sleep, physical activity, fruits, or vegetables or fewer sugary beverages). The RCT had three arms, each with 10 dyads: (1) CommitFit-only users; (2) CommitFit$, where adolescents were paid US $0.05 for each point they earned; and (3) waitlist control. Intervention dyads used the app for 3 months and had the option to use it for the fourth month without prompts or extra financial incentives. User analytic software was used to evaluate the frequency of user logs and goal achievement. Monthly surveys evaluated self-reported change in the 5 CommitFit health behaviors. Changes in BMI and blood pressure were evaluated for all participants at 3 clinical visits. Mental health, gamification, and behavior economics surveys were completed during the clinical visits. RESULTS: Recruitment began in August 2023 and was completed in 10 weeks. The research team successfully recruited and enrolled 30 dyads. Researchers emailed and called 89 caregivers on a physician-approved adolescent patient list, a 33% recruitment rate. Data collection and analysis will be conducted in the spring and summer of 2024. The results of this study are anticipated to be published between late 2024 and early 2025. CONCLUSIONS: This RCT will expand knowledge of the effectiveness of gamification techniques, financial incentives, and mHealth apps to motivate sustained health behavior change among adolescents and caregivers. These results may offer new opportunities to caregivers, health insurers, health care systems, and clinicians to motivate health behavior change in adolescents and caregivers, with the ultimate goal of preventing or reducing obesity and obesity-related diseases. Additional gamification, mental health surveys, and app user analytics included in the study may provide further insight into the characteristics of adolescents or caregivers who would benefit the most from using a gamified mHealth app like CommitFit. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/63505.

A Feasibility Study of Qualitative Methods Using the Zarit Burden Interview in Heart Failure Caregivers.

OBJECTIVES: The primary goal of this study was to identify and understand the burden experienced by informal caregivers of patients with HF at the time of hospital discharge. The researchers aimed to guide future education interventions and promote informal caregiver burden screening. DESIGN: The researchers administered the Zarit Burden Interview (ZBI) as a quantitative tool to assess informal caregiver burden. The ZBI is a standardized questionnaire used to measure the extent of burden experienced by informal caregivers. After administering the ZBI, the researchers conducted semi-structured interviews with five informal caregivers of patients with HF. These interviews were guided by probing questions related to ZBI items that were rated with high levels of burden (3 "quite frequently" or 4 "nearly always"). RESULTS: The quantitative data showed that the informal caregivers' burden scores on the ZBI ranged from 4 to 41. Male informal caregivers tended to report lower burden scores. The non-spouse informal caregiver had the highest burden score at 41. The qualitative analysis of the interviews revealed several themes related to informal caregiver burden, including fear, patient expectations, patient dependence on caregivers, social isolation, and stressors associated with medication changes after discharge. Despite the qualitative insights into specific burden-related issues, the quantitative analysis of the ZBI scores showed that, on average, informal caregivers reported little to no burden at the time of acute exacerbation of HF in the patient. CONCLUSION: The study's findings suggest that while informal caregivers may not report prominent levels of overall burden, they do face specific challenges and stressors, such as social isolation and managing medication changes post-discharge. These findings can inform the development of targeted support and interventions for informal caregivers of patients with HF.

Caring through uncertainty: a qualitative exploration of older colorectal cancer caregivers' experiences during palliative chemotherapy.

PURPOSE: Despite the increasing research on cancer patient caregivers, there is still a lack of detailed understanding about the experiences of spouses caring for elderly colorectal cancer patients. This study aimed to fill this gap by examining the caregiving experiences of spouses during palliative chemotherapy for elderly Chinese colorectal cancer patients. METHODS: Using a qualitative descriptive design, we recruited spousal caregivers of elderly colorectal cancer patients undergoing palliative chemotherapy. Semistructured interviews were conducted, and thematic analysis was employed to analyse the data. RESULTS: Sixteen caregivers aged 60 to 82 years participated in the interviews. The analysis revealed three main themes: ambivalence, multiple role adaptation to conflicts, and the coexistence of hope and pressure. These themes shed light on the behaviors of older caregivers and the challenges they face, including physical and psychosocial issues associated with aging. CONCLUSION: This study highlights the significant stress and challenges experienced by older caregivers, characterized by intertwined emotions such as anxiety about their spouses' health deterioration, exhaustion from long-term care responsibilities, and anticipation of treatment outcomes.

Negative and Positive Experiences During the COVID-19 Pandemic in Canadians With Developmental Disabilities: A One-Year Ontario-Based Survey.

PURPOSE: Understanding the experiences of people with developmental disabilities during the initial period of COVID-19 pandemic. METHODS: Individuals with developmental disabilities and their caregivers completed baseline and up to five follow-up online surveys using the CRISIS-AFAR measures, between July 2020 and September 2021. We used qualitative (thematic analysis) and quantitative (MANOVA) analytic methods. RESULTS: One hundred and eighteen participants (64 caregivers on individuals 6-62 years, 54 self-reporting individuals aged 17-55 years) completed baseline survey; 46 participants (23 caregivers, 23 self-reporting adults) completed ≥1 follow-up. Qualitative themes included uncertainty, and negative and positive influences on behaviours and routines, daily life and mental wellness. Those experiencing positive impacts did not stably perceive so longitudinally. CONCLUSIONS: Despite both negative and positive influences on individuals with developmental disabilities and their families, the prolonged pandemic had wide-ranging repercussions. Emergency preparedness planning should consider the disruptive effects of public health measures on routine and support for this vulnerable population.

Personal and environmental factors and household assistance in Down syndrome: cross-sectional study.

According to a biopsychosocial framework, personal and environmental factors might be mediators or facilitators/barriers, respectively, to functioning. However, it is not known how these factors can impact independence in household chores in children/adolescents with Down syndrome (DS). This study explored whether and how personal/environmental factors are associated with the independence level in household chores of children/adolescents with DS in Brazil. Caregivers of twenty-eight children/adolescents with DS were interviewed using the CHORES and a standardized questionnaire about personal (child's age and sex) and environmental (socioeconomic level and maternal schooling) factors. Multiple linear regression analysis identified if/how these factors are associated with level of independence. For CHORES self-care and CHORES total, sex was a significant variable explaining 21.8% and 15.8%, respectively, of the variation in the outcomes. For the outcome CHORES family care none of the variables was significant. Female sex was associated with a lower need for assistance. We conclude that only the personal factor assessed related to female sex in children with DS was associated with the independence level in household chores. This finding highlights the importance of health care providers and families to encourage the independence in chores regardless of sex and promote opportunities for both boys and girls.

Dogs with prior experience of a task still overimitate their caregiver.

Domestic dogs have been shown to copy their caregiver's actions, including ones which are causally-irrelevant to a physical goal-a behaviour called "overimitation". In a new overimitation task with a non-food reward, this study investigated "causal misunderstanding"-falsely assuming causally-irrelevant actions to have functional relevancy-as an explanation for dog overimitation (N = 81). By providing dogs with prior experience of the task to learn about the consequences of its irrelevant box-stepping and relevant bucket-opening action to obtain a toy-ball, we tested whether and when dogs would copy their caregiver's irrelevant-action demonstrations. Dogs with and without prior experience were compared to a third (control) group of dogs, who had neither prior experience nor caregiver demonstrations of the task. Results revealed that the timing of overimitation, rather than its frequency, was closely related to dogs' prior experience: dogs with prior experience attended to their reward first, then interacted with the irrelevant box later ("post-goal overimitation"), while dogs without prior experience first interacted with the irrelevant box ("pre-goal overimitation"). Our results suggest that, when action consequences are understood, dogs are overimitating for a secondary social goal that is clearly distinct from the task goal of obtaining a physical reward.

Psychometric properties of the German versions of the Problem Areas in Diabetes Scale for Children (PAID-C) with Type 1 Diabetes and Their Parents (P-PAID-C).

Children with Type 1 diabetes (T1D) and their parent-caregivers often experience diabetes distress due to the daily demands of diabetes management. Regular screening for diabetes distress is needed to prevent the deterioration of metabolic control and the development of mental health disorders. The aim of this analysis was to examine the psychometric properties of the German versions of the Problem Areas in Diabetes Scale for Children (PAID-C) and for caregiver burden in Parents (P-PAID-C). Data were collected from 136 children aged 7-12 years (46.7% females) and 304 parents (Mage = 42.9 (SD 6.1) years; 78% mothers) by using linguistically translated questionnaires in a multicenter study. Confirmatory factor analysis and correlational analyses were conducted. Results confirmed the two-factor model for the PAID-C and the four-factor model for the P-PAID-C with a slight modification. Cronbach's αs for children and parents were 0.88 and 0.92, respectively. The PAID-C and P-PAID-C scores had small positive associations with HbA1c (rs = .220 and .139, respectively, all p < .05) and strong inverse association with the KIDSCREEN-10 index (r = -.643 and -.520, respectively, all p < .001). P-PAID-C scores increased with increasing depressive symptoms measured in nine-item Patient Health Questionnaire among parents (rs = .534, p < .001). The scores produced by the German PAID-C and P-PAID-C were reliable and valid in measuring diabetes burdens. These German versions of PAID can be utilized to assess diabetes-specific distress and to design interventions for children and their parents experiencing high levels of diabetes distress. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Caring for Persons with Alzheimer's Disease during a Pandemic: An Integrative Literature Review.

The population experiencing Alzheimer's disease (AD) and their caregivers have been tremendously impacted by the global COVID-19 pandemic. Outpatient services became less accessible during the pandemic lockdown which caused increased caregiver burden more than usual. Further examination discovered that caregivers were unable to properly take care of themselves because of the need to provide around-the-clock care to loved ones, who pre-pandemic were able to receive supplemental caregiving services. The purpose of this integrative review was to provide a synthesis of information regarding caregiver experiences, during a time of limited resources, such as with the COVID-19 global pandemic. A comprehensive search of the literature databases Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Medline was completed yielding qualitative and mixed-methods studies. The literature search yielded 14 articles which met the criteria. Three themes emerged during this review. They include: Deprivation of self-care and social connectedness, Fragmented care and resources, and Improved policy development. Multiple gaps in caregiver needs have been identified throughout the literature. Outpatient services, home health aides, and respite care remain necessary elements of care for those with AD and for the relief of the caregiver. Forward planning should include government policies to support caregiving of those with AD, especially in the light of service restrictions or unavailable services.

Effectiveness of a Mobile App (Meds@HOME) to Improve Medication Safety for Children With Medical Complexity: Protocol for a Randomized Controlled Trial.

BACKGROUND: This study will pilot-test the mobile app, Medication Safety @HOME-Meds@HOME intervention to improve medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management for children with medical complexity (CMC). The Meds@HOME app was co-designed with CMC families, secondary caregivers (SCGs), and health professionals to support medication management for primary caregivers (PCGs) and SCGs of CMC. We hypothesize that Meds@HOME will improve caregivers' medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management. OBJECTIVE: This study aims to evaluate the effectiveness of Meds@HOME on medication administration accuracy for PCGs and SCGs. METHODS: This study will recruit up to 152 PCGs and 304 SCGs of CMC who are prescribed at least 1 scheduled high-risk medication and receive care at the University of Wisconsin American Family Children's Hospital. PCGs will be randomly assigned, for the 6-month trial, to either the control group (not trialing Meds@HOME) or the intervention group (trialing Meds@HOME) using 1:1 ratio. The Meds@HOME app allows caregivers to create a child profile, store medication and care instructions, and receive reminders for upcoming and overdue care routines and medication refills. Surveys completed both at the start and end of the trial measure demographics, medication delivery knowledge, confidence in the CMC's caregiving network, and comfort with medical information. Univariate and multivariate generalized estimation equations will be used for primary statistical analysis. The primary outcome is the PCG's rate of medication administration accuracy measured as correct identification of each of the following for a randomly selected high-risk medication: indication, formulation, dose, frequency, and route at baseline and after 6 months. Secondary outcomes include SCG medication administration accuracy (indication, formulation, dose, frequency, and route), count of University of Wisconsin hospital and emergency department encounters, PCG-reported medication adherence, count of deaths, and PCG medication confidence and understanding. RESULTS: Recruitment for this study began on November 29, 2023. As of May 15, 2024, we have enrolled 94/152 (62%) PCGs. We expect recruitment to end by August 1, 2024, and the final participant will complete the study by January 28, 2025, at which point we will start analyzing the complete responses. We expect publication of results at the end of 2025. CONCLUSIONS: The Meds@HOME mobile app provides a promising strategy for improving PCG medication safety for CMC who take high-risk medications. In addition, this protocol highlights novel procedures for recruiting SCGs of CMC. In the future, this app could be used more broadly across diverse caregiving networks to navigate complex medication routines and promote medication safety. TRIAL REGISTRATION: ClinicalTrials.gov NCT05816590; https://clinicaltrials.gov/study/NCT05816590. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/60621.

Burden and Quality of Life of Family Caregivers Caring for Patients on Hemodialysis.

The objective of this systematic review was the evaluation of the burden of family caregivers of patients on hemodialysis and its correlation with caregivers' quality of life. Articles from PubMed and Scopus published between 2012 to 2022 were retrieved from using the key words burden, family caregivers, quality of life, and hemodialysis patients. Articles reviewed included quantitative data indicating the family caregiver burden ranged from moderate to severe. The correlation between burden and quality of life was negative. Nephrology nurses in hemodialysis units should contribute to the design and implementation of educational programs and support strategies for family caregivers of patients on hemodialysis to support caregivers, reduce their burden, and improve their quality of life.

Building on and tailoring to: Adapting a cancer caregiver psychoeducational intervention for rural settings.

INTRODUCTION: Rural cancer caregivers experience obstacles in accessing services, obtaining respite, and ensuring their care recipients receive quality care. These challenges warrant opportunities to participate in evidence-based behavioral intervention trials to fill support gaps. Adaptation to rural settings can facilitate appropriate fit, given higher caregiver service needs and unique challenges. We present findings from the adaptation process of a psychoeducational intervention designed to support cancer caregivers in rural settings. METHODS: We adapted Reblin's CARING intervention, designed for neuro-oncology, to target caregivers of rural cancer patients across cancer sites. First, we conducted formative work to determine the unmet social and supportive care needs rural cancer caregivers faced. We used the Framework for Reporting Adaptations and Modifications to Evidence-based Implementation Strategies (FRAME-IS) to guide the modifications. To conduct the adaptation, we elicited feedback through qualitative interviews of seven caregivers and three cancer hospital staff and thematic analysis to inform intervention modifications. Our qualitative study was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). RESULTS: Interviews revealed that service access was a pressing need, along with financial (e.g., treatment costs, employment challenges) and geographic barriers (e.g., distance to treatment, road conditions). We modified content, training, and context using the FRAME-IS steps. Changes enhanced fit through the following adaptations: changes to social support domains, session content, interventionist training, resource offerings, screening and recruitment processes, and virtual delivery. DISCUSSION: Challenges to establishing successful psychosocial oncology interventions may be improved through participant-centered approaches and implementation science. Additional systemic challenges, including lack of systematic documentation of caregivers, persist and may especially disadvantage under-represented and underserved groups, such as rural dwellers. The enCompass intervention is undergoing ongoing single-arm pilot of rural cancer patient/caregiver dyads targeting caregiver coping self-efficacy and patient/caregiver distress (Clinical Trials #NCT05828927).

Societal costs and quality of life associated with arginase 1 deficiency in a European setting - a multinational, cross-sectional survey.

BACKGROUND AND AIMS: Arginase 1 deficiency (ARG1-D) is a ultrarare disease with manifestations that cause mobility and cognitive impairment that progress over time and may lead to early mortality. Diseases such as ARG1-D have a major impact also outside of the health care sector and the aim of this study was to estimate the current burden of disease associated with ARG1-D from a societal perspective. METHODS: The study was performed as a web-based survey of patients with ARG1-D and their caregivers in four European countries (France, Portugal, Spain, United Kingdom). The survey was distributed at participating clinics and included questions on e.g. symptoms (including the Gross Motor Function Classification System, GMFCS, and cognitive impairment), health care use, medication, ability to work, caregiving, and impact on health-related quality-of-life (HRQoL) using the EQ-5D-5L. RESULTS: The estimated total mean societal cost per patient and year was £63,775 (SD: £49,944). The cost varied significantly with both mobility impairment (from £49,809 for GMFCS level 1 to £103,639 for GMFCS levels 3-5) and cognitive impairment (from £43,860 for mild level to £99,162 for severe level). The mean utility score on the EQ-5D-5L for patients was 0.498 (SD: 0.352). The utility score also varied significantly with both mobility impairment (from 0.783 for GMFCS level 1 to 0.153 for GMFCS level 3-5) and cognitive impairment (from 0.738 for mild level to 0.364 for severe level). CONCLUSIONS: Similar to other studies of rare diseases, the study is based on a limited number of observations. However, the sample appear to be reasonably representative when comparing to previous studies of ARG1-D. This study shows that ARG1-D is associated with a high societal cost and significant impact on HRQoL. Earlier diagnosis and better treatment options that can postpone or withhold progression may therefore have a potential for improved HRQoL and savings for the patient, caregiver, and society.

Communication as Healing Art in Caring for Persons with Alzheimer's and Dementia.

ABSTRACT: Communication is an essential aspect of care for all patients but is especially important for individuals with Alzheimer's disease or other forms of dementia. Nurses who care for persons living with dementia (PwD), as well as family members and caregivers, need understanding of verbal and nonverbal communication techniques and approaches that are effective throughout the stages of dementia. Spiritual assessment and care also are critical. This article provides evidence-based and biblical examples for communication as a healing art in caring for PwD.

A randomised study to evaluate the potential added value of shared meditation involving people with cancer, health professionals and third persons compared to meditation conducted with patients only: design of the Implic-2 protocol.

BACKGROUND: In oncology, the suffering of patients and the burnout of health professionals are key issues. Mindfulness meditation is a holistic approach that can help to improve well-being. While numerous studies have shown the benefits of meditation for both patients and health professionals, the added value of offering shared meditation to groups of patients, health professionals and third persons has not been assessed. Beyond strengthening the relationship between carers and patients, opening up meditation sessions to third parties (neither carers nor patients) enables patients to escape the stigma of their illness. We previously conducted a pilot study that validated the feasibility and the relevance of shared meditation with a specifically designed programme. METHODS/DESIGN: IMPLIC-2 is a two-arm randomised study designed to assess the added value of this meditation programme (optimised following the pilot study), particularly for cancer patients (our target population). People motivated to follow the programme, without previous regular practice of meditation and able to participate in the sessions are eligible. The study will include 96 participants: 16 health professionals, 16 third persons and 64 patients. The latter will be randomized in two arms: the experimental arm ("Shared" meditation) consisting of 4 mixed groups of 8 patients, 4 health professionals and 4 third parties, and the control arm ("Patient" meditation) consisting of 2 groups of 16 patients. Validated questionnaires will be used to measure the effects of the programme, notably in terms of quality of life, perceived stress, feelings of self-efficacy, qualities of mindfulness and self-compassion, and carers' burn-out. Participants' perception of a change in their quality of life and satisfaction will be measured at the end of the programme. A complementary qualitative focus-group approach will be used to optimise implementation of the programme beyond the study. DISCUSSION: The well-being of oncology patients would be improved. Dealing with overworked carers would have a beneficial impact on the way they interact with patients. In addition, encounters between the three types of population will allow otherness to be viewed differently and alleviate suffering by promoting collective humanity. TRIAL REGISTRATION: NCT06041607, registered: 09/18/2023. PROTOCOL VERSION: Version n°1.2 dated from 08/29/2023.

Fostering social health of people with dementia: evaluation of the Razem przed siebie dementia awareness campaign in Poland.

Background: Due to the need to increase social awareness about dementia and the needs of patients living with dementia in Poland, the Razem przed siebie (eng. Forward with Dementia) campaign was created. The aim of the study was to evaluate its effectiveness. Methods: To disseminate key campaign messages to the target audiences (people with dementia, carers, health and social care professionals [HSCP] and general public) a website, social and traditional media promotions, webinars and social activities were created. The campaign ran between September 2021 and April 2022. Mixed methods (online survey, reach estimates and interviews) were used to evaluate the campaign. Results: Almost 1,300 people visited the website during the campaign period. Of these, 55 carers and HSCP responded to the online survey. The most read section of the website was Understanding the diagnosis (carers [56% of 25] and HSCP [80% out of 30]). The website was mostly accessed by carers (68%) and HSCP (66.7%) through word-of-mouth recommendations. 80% carers and 90% HSCP found the website very or extremely helpful. Over 90% of carers and HSCP expressed an intention to revisit the website. Based on 31 interviews, campaign effects, change mechanisms and limitations were identified. Campaign events elicited positive emotions among people with dementia, providing them with a feeling of belonging and engagement. Esteeming personal interactions over informational campaign materials, those with dementia felt acknowledged and empowered by the events. Carers also reported positive experiences and increased interest and knowledge, though they expressed disappointment with the lack of respite care, an issue beyond the campaign's scope. HSCP perceived the campaign events positively and identified significant gaps in the dementia care system. Conclusion: Evaluation of the Razem przed siebie campaign revealed successes and limitations. While effectively incorporating anti-stigma campaign recommendations and enhancing social health for individuals with dementia, the campaign clearly showed the pressing need for systemic solutions. Despite positive perception of the campaign, there is a need for a better diagnostic and post-diagnostic support for people with dementia and their carers.

Long-term distress throughout one's life: health-related quality of life, economic and caregiver burden of patients with neurofibromatosis type 1 in China.

Introduction: Neurofibromatosis type 1 (NF1) is a rare genetic disorder, with lack of evidence of disease burden in China. We aimed to describe the economic burden, health-related quality of life (HRQL), and caregiver burden of NF1 patients in China. Methods: We conducted an online cross-sectional survey employing the China Cloud Platform for Rare Diseases, with 223 caregivers of NF1 pediatric patients (patients under 18), and 226 adult patients. Economic burden was estimated using direct and indirect costs related to NF1 in 2021, and the Work Productivity and Activity Impairment Questionnaire: General Health V2.0 (WPAI-GH). HRQL measures included EQ-5D-Y proxy version and PedsQL™ 4.0 Generic Core Scales (PedsQL GCS) proxy version for pediatric patients, and EQ-5D-5L and PedsQL™ 3.0 Neurofibromatosis Module (PedsQL NFM) for adult patients. Caregiver burden was estimated by Zarit Burden Interview (ZBI). Results: For pediatric patients, the average direct cost in 2021 was CNY 33,614 (USD 4,879), and employed caregivers' annual productivity loss was 81 days. EQ-5D-Y utility was 0.880 ± 0.13 and VAS score was 75.38 ± 20.67, with 52.6% patients reporting having problems in "pain/discomfort" and 42.9% in "anxiety/depression." PedsQL GCS total score was 68.47 ± 19.42. ZBI score demonstrated that 39.5% of caregivers had moderate-to-severe or severe burden. For adult patients, average direct cost in 2021 was CNY 24,531 (USD 3,560). Patients in employment reported an absenteeism of 8.5% and presenteeism of 21.6% according to the results of WPAI-GH. EQ-5D-5L utility was 0.843 ± 0.17 and VAS score was 72.32 ± 23.49, with more than half of patients reporting having problems in "pain/discomfort" and "anxiety/depression" dimensions. PedsQL NFM total score was 68.40 ± 15.57. Conclusion: Both pediatric and adult NF1 patients in China had a wide-ranging economic burden and low HRQL, especially in the psychological dimension. Caregivers for NF1 pediatric patients experienced considerable caregiver burden. More attention and support from policymakers and stakeholders are required to relieve NF1 patients' and caregivers' distress.

Place-based, intersectional variation in caregiving patterns and health outcomes among informal caregivers in the United States.

Introduction: Informal caregiving is a critical component of the healthcare system despite numerous impacts on informal caregivers' health and well-being. Racial and gender disparities in caregiving duties and health outcomes are well documented. Place-based factors, such as neighborhood conditions and rural-urban status, are increasingly being recognized as promoting and moderating health disparities. However, the potential for place-based factors to interact with racial and gender disparities as they relate to caregiving attributes jointly and differentially is not well established. Therefore, the primary objective of this study was to jointly assess the variability in caregiver health and aspects of the caregiving experience by race/ethnicity, sex, and rural-urban status. Methods: The study is a secondary analysis of data from the 2021 and 2022 Behavioral Risk Factor Surveillance System (BRFSS) from the Centers for Disease Control and Prevention. Multivariable logistic regression or Poisson regression models assessed differences in caregiver attributes and health measures by demographic group categorized by race/ethnicity, sex, and rural-urban status. Results: Respondents from rural counties were significantly more likely to report poor or fair health (23.2% vs. 18.5%), have obesity (41.5% vs. 37.1%), and have a higher average number of comorbidities than urban caregivers. Overall, rural Black male caregivers were 43% more likely to report poor or fair health than White male caregivers (OR 1.43, 95% CI 1.21, 1.69). Urban female caregivers across all racial groups had a significantly higher likelihood of providing care to someone with Alzheimer's disease than rural White males (p < 0.001). Additionally, there were nuanced patterns of caregiving attributes across race/ethnicity*sex*rural-urban status subgroups, particularly concerning caregiving intensity and length of caregiving. Discussion: Study findings emphasize the need to develop and implement tailored approaches to mitigate caregiver burden and address the nuanced needs of a diverse population of caregivers.