Understanding caregiver burden and quality of life in Kerala's primary palliative care program: a mixed methods study from caregivers and providers' perspectives.

BACKGROUND: Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues. METHODS: We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews. RESULTS: Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854-0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907-0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912-0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970-0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this. CONCLUSION: In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.

Navigating the Caregiving Pathway: Understanding the Contextual Influences on Sense of Coherence Among Family Caregivers.

INTRODUCTION: Family caregivers of patients with chronic conditions face challenges such as emotional and physical stress, which can lead to caregiver burden. A good sense of coherence (SOC) is crucial in promoting resilience, positive health outcomes, and coping. Caregivers with a high SOC are optimistic about their caregiving roles and finding meaning and purpose in their responsibilities. In this background, we looked into the contextual influences that facilitate or impede the sense of coherence of the family caregivers of patients with chronic conditions requiring home-based long-term care. METHODS: We conducted telephonic interviews with 10 self-identified primary family caregivers of patients with chronic conditions. We utilized semi-structured interview guidelines, transcribed the interviews verbatim, and performed thematic analysis. Potential factors influencing caregivers' SOC were identified through inductive coding, allowing themes to emerge from the data. However, we report themes along the three components of SOC. RESULTS: Good knowledge about the disease conditions, open communication with care recipients and providers, and past caregiving experiences all contribute to improving comprehensibility. Insufficient knowledge about the condition could be distressing. Effective management requires adapting care strategies through learning, planning, and utilizing available resources, and support networks, too, play a crucial role. However, insufficient caregiver support and neglecting one's health can result in distress and disruptions in care management. Maintaining positive perspectives and ascribed values to interpersonal connections can enhance meaningfulness among caregivers. These interpretations may not apply to caregivers with affective disorders. CONCLUSION: Various aspects influence the comprehensibility, manageability, and meaningfulness pertaining to the situation of family caregivers, and these in turn impact their well-being and ability to provide quality care. Understanding these factors can help create support systems with targeted interventions and strategies to reduce caregiver burden and improve quality of life.

Exploring Children's Knowledge of Healthy Eating, Digital Media Use, and Caregivers' Perspectives to Inform Design and Contextual Considerations for Game-Based Interventions in Schools for Low-Income Families in Lima, Peru: Survey Study.

BACKGROUND: The prevalence of overweight and obesity in schoolchildren is increasing in Peru. Given the increased use of digital media, there is potential to develop effective digital health interventions to promote healthy eating practices at schools. This study investigates the needs of schoolchildren in relation to healthy eating and the potential role of digital media to inform the design of game-based nutritional interventions. OBJECTIVE: This study aims to explore schoolchildren's knowledge about healthy eating and use of and preferences for digital media to inform the future development of a serious game to promote healthy eating. METHODS: A survey was conducted in 17 schools in metropolitan Lima, Peru. The information was collected virtually with specific questions for the schoolchild and their caregiver during October 2021 and November 2021 and following the COVID-19 public health restrictions. Questions on nutritional knowledge and preferences for and use of digital media were included. In the descriptive analysis, the percentages of the variables of interest were calculated. RESULTS: We received 3937 validated responses from caregivers and schoolchildren. The schoolchildren were aged between 8 years and 15 years (2030/3937, 55.8% girls). Of the caregivers, 83% (3267/3937) were mothers, and 56.5% (2223/3937) had a secondary education. Only 5.2% (203/3937) of schoolchildren's homes did not have internet access; such access was through WiFi (2151/3937, 54.6%) and mobile internet (1314/3937, 33.4%). In addition, 95.3% (3753/3937) of schoolchildren's homes had a mobile phone; 31.3% (1233/3937) had computers. In relation to children's knowledge on healthy eating, 42.2% (1663/3937) of schoolchildren did not know the recommendation to consume at least 5 servings of fruits and vegetables daily, 46.7% (1837/3937) of schoolchildren did not identify front-of-package warning labels (FOPWLs), and 63.9% (2514/3937) did not relate the presence of an FOPWL with dietary risk. Most schoolchildren (3100/3937, 78.7%) preferred to use a mobile phone. Only 38.3% (1509/3937) indicated they preferred a computer. In addition, 47.9% (1885/3937) of caregivers considered that the internet helps in the education of schoolchildren, 82.7% (3254/3937) of caregivers gave permission for schoolchildren to play games with digital devices, and 38% (1495/3937) of caregivers considered that traditional digital games for children are inadequate. CONCLUSIONS: The results suggest that knowledge about nutrition in Peruvian schoolchildren has limitations. Most schoolchildren have access to the internet, with mobile phones being the device type with the greatest availability and preference for use. Caregivers' perspectives on games and schoolchildren, including a greater interest in using digital games, provide opportunities for the design and development of serious games to improve schoolchildren's nutritional knowledge in Peru. Future research is needed to explore the potential of serious games that are tailored to the needs and preferences of both schoolchildren and their caregivers in Peru in order to promote healthy eating.

Exploring the Impact of Epidermolysis Bullosa on Parents and Caregivers: A Cross-Cultural Validation of the Epidermolysis Bullosa Burden of Disease Questionnaire.

Purpose: Epidermolysis bullosa (EB) is a heterogeneous group of genetically inherited skin and mucosal fragility disorders. EB may have a profound impact on parental physical and psychosocial health. This study was designed to evaluate the disease burden in parents of patients with EB and identify out-of-pocket (OOP) expenditures for EB care in Saudi Arabia. Patients and Methods: Thirty-eight caregivers of patients with EB were recruited from the Saudi EB registry to participate. All participants completed the EB Burden of Disease (EB-BoD) questionnaire. Data were collected between May 2020 and December 2020. The sample included 10 patients with EB simplex (EBS), 10 with junctional EB (JEB), 14 with dystrophic EB (DEB), and 4 with an unknown type. Results: Mothers were the primary caregivers in 89.5% of cases. The mean EB-BoD score was 53 ± 21.5. The family-life and child's life dimensions had the higher burden. The mean EB-BoD score observed in patients with DEB was 62.4±16.8 versus 45.7 ± 19.42 for EBS. The EB-BoD score was correlated with the patient's family income. Most caregivers (97.4%) reported OOP expenditure, with a mean monthly OOP expenditure of $575.5± $701.1. OOP expenses increased with the severity of the condition. Conclusion: This study highlights the need for support services for parents caring for patients with EB.

Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults.

BACKGROUND: This study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility. METHODS: This cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach's alphas (α) and McDonald's omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains. RESULTS: Results revealed good internal consistency reliability (α = 0.83-0.96) and concurrent validity (rho = 0.45-0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model's predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress. CONCLUSIONS: The interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers' strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.

Working with a robot in hospital and long-term care homes: staff experience.

Although there is a growing literature on the use of telepresence robots in institutional dementia care settings, limited research focused on the perspectives of frontline staff members who deliver dementia care. Our objective was to understand staff perspectives on using telepresence robots to support residents with dementia and their families. Guided by the Consolidated Framework for Implementation Research, we conducted four focus groups and 11 semi-structured interviews across four long-term care (LTC) homes and one hospital in Canada. We included 22 interdisciplinary staff members (e.g., registered nurses, social workers, occupational therapists, recreational therapists) to understand their experiences with telepresence robots. Thematic analysis identified three key themes: 1) Staff Training and Support; 2) Robot Features; 3) Environmental dynamics for Implementation. Our results underscore the imperative of structural support at micro-, meso- and macro-levels for staff in dementia care settings to effectively implement technology. This study contributes to future research and practice by elucidating factors facilitating staff involvement in technology research, integrating staff voices into technology implementation planning, and devising strategies to provide structural support to staff, care teams, and care homes.

Caregiver perspectives on receiving gender-affirming care with their transgender and gender diverse adolescents via telemedicine.

Telemedicine may help improve access to gender-affirming care for transgender and gender diverse (TGD) adolescents. Parents or guardians (i.e., caregivers) of TGD adolescents play a critical role in supporting TGD adolescents in accessing this care. The purpose of this study was to explore caregivers' perspectives regarding their adolescent receiving pediatric gender-affirming care via telemedicine to help providers and health systems optimize this modality for future care delivery. Caregivers (n=18) of TGD adolescents ages 14-17 participated in semi-structured, individual interviews that were transcribed and analyzed qualitatively. Caregivers cited participating in visits from their home environment, decreased anxiety, COVID safety, ability to have more family members attend, no transportation demands, and effective delivery of care as advantages of telemedicine. Disadvantages included dysphoria or discomfort with self-image, impersonal provider-patient interactions, video teleconferencing fatigue, difficulty with portal navigation, connectivity issues, and lack of privacy. Caregivers largely deferred to their child's preference regarding the choice of visit modality, but many reported a preference for the first to be conducted in-person, and follow-up and less complex visits via telemedicine. Health systems should consider these perspectives as they adapt telemedicine infrastructure to better meet the needs of patients and their families.

Perceptions and experiences of adult caregivers receiving mindfulness-based behavioural education: A qualitative study.

Introduction: Adult caregivers (ACGs) are largely responsible for caring for their family members, which can increase their stress levels. This increased stress makes them more susceptible to chronic illnesses. The adoption of health-promoting behaviours, particularly through mindfulness-based behavioural education (MBBE), can significantly impact the daily habits of ACGs. However, there is limited research on this topic in the context of Thailand. Thus, this study aimed to explore the perceptions and experiences of ACGs receiving MBBE, focusing on physical, mental, social and other influential factors. Methods: A qualitative study was conducted among 19 ACGs living in the Bangkok Metropolitan Area. Focus group discussions (FGDs) and observations were conducted. The FGDs were digitally recorded, and their contents were analysed. Results: The ACGs were found to perceive and experience improvements in their mental stability and habitual behaviour. These improvements manifested as increased calmness, relaxation, clear communication, empathy, reduced risky behaviour, decreased desire for excessive consumption and travel and reduced pain. Furthermore, mindful behaviour was influenced by both internal and external personal factors as well as the specific situational environment. Conclusion: MBBE could lead to an increase in promotional behaviour, especially when combined with awareness, self-recollection and a self-efficacy approach. This finding encourages health personnel to consider incorporating regular skill practice as a complement to health education.

Caregivers' experiences and practices for malnourished children undergoing tuberculosis treatment in Eswatini.

Background: Eswatini is one of the countries affected by malnutrition and tuberculosis (TB) and some cases remained untreated. These two conditions are major public health problems. Aim: This study aimed to explore and describe caregivers' experiences and practices of children's nutrition during treatment. Setting: Baylor College of Nursing Children's Foundation - Eswatini (BCMCF-SD). Methods: A qualitative study following a narrative design used purposive sampling to identify 12 caregivers of malnourished children and informed consent obtained. In-depth interview used semi-structured interview guide and digital voice recorder. Field notes were taken, transcribed, translated and analysed using NVivo version 11. Results: Two themes emerged as home's nutritional situation and health facility's nutritional support. The study found that most of the caregivers gave children unbalanced diet, while those less than a year were mixed-fed. Some caregivers reported experience of lost breadwinners, unemployment and high number of children than what the family could afford. The caregivers' practices around food by prescription included inadequate supply of the ready-to-use therapeutic food and sharing of prescribed food supplies with other healthy children. Conclusion: During treatment, children's caregivers need short health education and support. The Ministry of Health in Eswatini should consider using some comic books to guide that. Moreover, upscale vocational training promotes entrepreneurship and agricultural activities. Contribution: Association of malnutrition and TB outcomes has provided evidence-based information for more comprehensive integration between nutrition programmes and tuberculosis programmes. The study's findings contributed to the growing body of knowledge about the association between malnutrition and diagnosed drug-susceptible TB among children aged from 0 - 15 years.

COVID-19 experience of people with severe mental health conditions and families in South Africa.

Background: People with severe mental health conditions, such as schizophrenia, and their family caregivers are underserved in low- and middle-income countries where structured psychosocial support in the community is often lacking. This can present challenges to recovery and for coping with additional strains, such as a pandemic. Aim: This study explored the experiences and coping strategies of people with lived experience of a severe mental health condition, and family caregivers, in South Africa during the initial stages of the coronavirus disease 2019 (COVID-19) pandemic. Setting: This qualitative study was conducted in the Nelson Mandela Bay District, Eastern Cape, South Africa, in the most restrictive period of the COVID-19 lockdown. Methods: Telephonic qualitative interviews were conducted with people with lived experience (n = 14) and caregivers (n = 15). Audio recordings were transcribed and translated to English from isiXhosa. Thematic analysis was conducted with NVivo 12. Results: Participants described negative impacts including increased material hardship, intensified social isolation and heightened anxiety, particularly among caregivers who had multiple caregiving responsibilities. Coping strategies included finding ways to not only get support from others but also give support, engaging in productive activities and taking care of physical health. The main limitation was inclusion only of people with access to a telephone. Conclusion: Support needs for people with severe mental health conditions and their families should include opportunities for social interaction and sharing coping strategies as well as bolstering financial security. Contribution: These findings indicate that current support for this vulnerable group is inadequate, and resource allocation for implementation of additional community-based, recovery-focused services for families must be prioritised.

Changing practice to improve quality of life in glioma.

As treatment for glioma advances, with an attendant improvement in length of patient survival, the quality of that survival has rightly become an increasingly important patient-centered metric, and health-related quality of life (HRQOL) an important outcome measure. HRQOL is a self-assessed, multidimensional concept encompassing the physical, emotional, and social components of quality of life associated with illness and its treatment. Neurosurgeons caring for patients with gliomas should be aware of the latest research on HRQOL to understand mechanisms by which it can be improved. Neurosurgical outcomes related to surgical complications and neurological deficits can be important determinants of HRQOL and are well understood by neurosurgeons. However, an understanding of more general or global determinants of HRQOL not commonly addressed in the clinic, and implementation of the attendant evidence-based interventions to address them, would be transformative. The authors explore HRQOL determinants related to patient-, social-, tumor-, and treatment-related factors, with a particular emphasis on the strongest determinants, fatigue, sleep disturbance, anxiety, depression, neurocognitive dysfunction, caregiver distress, and end-of-life concerns. Evidence-based interventions are reviewed, including fatigue management, cognitive rehabilitation, insomnia interventions exercise, caregiver training, palliative care, and an overall multidisciplinary team approach. Lastly, features of a program are outlined that would embed HRQOL in neurosurgical care to the benefit of both patients and staff.

Making robots matter in dementia care: Conceptualising the triadic interaction between caregiver, resident and robot animal.

While previous research studies have focused on either caregivers' or residents' perception and use of social robots, this article offers an empirical and theoretical examination of joint activities in triadic human-robot interaction. The symptomatology of dementia creates an asymmetrical relation wherein the impetus to employ a robot often originates from the caregiver. Drawing on field work and video recorded interactions in dementia care homes, the article investigates how caregivers draw on embodied resources to involve residents and robot animals in interaction. The analysis demonstrates how caregivers promote commitment and encounter resistance with residents. We draw on the theory of sociomaterial interactionism to study situated interaction between bodies in a meaning-generating process. By re-conceptualising the theoretical notions of manipulation and recruitment, the article offers an approach for studying orientations that distinguish between reciprocity of agential objects. We show that caregivers usually distinguish between interactions with people and machines by anticipating a specific response from the robots (manipulation), while they invite participation in a broader sense from residents (recruitment). Social friction arises, however, if caregivers act upon the residents as embodied objects in manipulative ways.

Child passenger safety: Implementation and evaluation of a virtual educational intervention for parents and caregivers.

OBJECTIVE: The objective of this project was to determine how a virtual educational intervention on Child Passenger Safety (CPS) impacts post-intervention knowledge and self-efficacy levels. METHODS: The intervention included watching a video related to CPS and completing a virtual car seat check with a certified Child Passenger Safety Technician (CPST). A quantitative pre- and post-test project design was utilized. Self-efficacy was measured using a confidence assessment and knowledge level was measured with a comprehension test. Participants were included if they had access to the internet, were English speaking, and parents or caregivers of children aged 12 years or younger. The program was active between February and April of 2021. Out of 58 individuals who expressed interest in participating in the program, the completion rate was 41 %. There were 24 participants who completed all steps of the intervention with a range in days to completion of 59 days. RESULTS: A video-based education intervention combined with completing a virtual car seat check with a CPST was shown to have a statistically significant impact on the knowledge and self-efficacy levels surrounding the use and installation of Child Safety Seats (CSSs) by parents and caregivers. There were a total of 34 car seats that were assessed during the virtual car seat checks and results showed that 65.6% of the car seats that were assessed on arrival had at least 1 error present. In whole, there were 34 car seat errors identified by the CPSTs throughout this project timeline. CONCLUSIONS: A video-based educational intervention combined with a virtual car seat check with a certified CPST has a positive impact on the knowledge and self-efficacy levels of participants. The data analysis shows the project was a successful and meaningful intervention to promote improvements in the field of CPS. This study design allows for the implementation of additional resources and supports for CPS within rural areas and at-risk populations and can help to address public health issues related to a lack of resources based on geographic location.

Healthcare and social care professionals' experiences of respite care: a critical incident study.

INTRODUCTION: Aging in place is favoured among older persons and supported by research in Sweden, although it poses challenges for overburdened informal caregivers. While respite care can offer support, its accessibility is hindered by organizational challenges and informal caregivers' delays in using it. The experiences of informal caregivers are well-studied, but the professionals' experiences of respite care quality and critical incident management are underexplored. AIM: To explore professionals' experiences of critical incidents in respite care, consequences for the persons being cared for, and strategies to manage critical incidents. MATERIALS AND METHODS: A qualitative, critical incident technique was used, and three group interviews with a total of 16 professionals were conducted. RESULTS: Barriers to quality respite care included communication gaps during care transitions, environmental shortcomings in respite care facilities, lack of support for informal caregivers, and inadequacies in respite care decisions. Strategies to manage critical incidents included individualized care, continuity and communication in care transitions, a conducive environment, support for informal caregivers, and care professionals' positive approach. CONCLUSIONS: The study emphasizes the need for focused efforts on communication, continuity, and a supportive environment. Addressing identified challenges and applying suggested strategies will be key to maximizing the potential of respite care as a vital support for care recipients and their informal caregivers.

Best practices for the management of febrile seizures in children.

Febrile seizures (FS) are commonly perceived by healthcare professionals as a self-limited condition with a generally 'benign' nature. Nonetheless, they frequently lead to pediatric consultations, and their management can vary depending on the clinical context. For parents and caregivers, witnessing a seizure can be a distressing experience, significantly impacting their quality of life. In this review, we offer an in-depth exploration of FS management, therapeutic interventions, and prognostic factors, with the aim of providing support for physicians and enhancing communication with families. We conducted a comprehensive literature search using the PubMed and Web of Science databases, spanning the past 50 years. The search terms utilized included "febrile seizure," "complex febrile seizure," "simple febrile seizure," in conjunction with "children" or "infant." Only studies published in English or those presenting evidence-based data were included in our assessment. Additionally, we conducted a cross-reference search to identify any additional relevant data sources. Our thorough literature search resulted in a compilation of references, with carefully selected papers thoughtfully integrated into this review.

Family dementia caregivers with suicidal ideation improve with mentalizing imagery therapy: Results from a pilot study.

Background: Family caregivers of persons living with dementia often experience increased depression and suicidal ideation (SI). However, the feasibility and impact of therapies on caregiver SI has remained largely unexplored. Mentalizing imagery therapy (MIT) helps reduce psychological symptoms through mindfulness and guided imagery. This pilot study examined the feasibility of participation by caregivers with SI in a randomized controlled trial (RCT) of MIT versus a psychosocial support group (SG), and the respective impact of group on SI, depression, and secondary outcomes. Methods: A secondary analysis of data from an RCT of 4-week MIT or SG for caregivers (n = 46) was performed, identifying SI (n = 23) and non-SI (n = 23) cohorts. Group attendance and home practice were compared between cohorts. In the SI cohort (total n = 23, MIT n = 11, SG n = 12), group differences in SI, depression, and secondary outcomes were evaluated post-group and at 4-month follow-up. Results: Attendance in both groups and home practice in MIT were similar between SI and non-SI cohorts. In the SI cohort, MIT evinced greater improvements relative to SG in SI (p=.02) and depression (p=.02) post-group, and other secondary outcomes at follow-up. Limitations: Limitations include small sample size and single-item assessments of SI from validated depression rating scales. Conclusions: Participation in an RCT was feasible for caregivers with SI. MIT resulted in important benefits for SI and depression, while SG showed no acute SI benefit. The role of MIT in improving SI should be confirmed with adequately powered trials, as effective therapies to address caregiver SI are critical.

Managing Multiple Chronic Conditions during COVID-19 Among Patients with Social Health Risks.

BACKGROUND: Optimal care for persons with multiple chronic conditions (MCC) requires primary and specialty care continuity, access to multiple providers, social risk assessment, and self-management support. The COVID-19 pandemic abruptly changed primary care delivery to increase reliance on telehealth and virtual care. We report on the experiences of individuals with MCC and their family caregivers on managing their health and receiving health care during the initial pandemic. METHODS: Semistructured qualitative interviews with 30 patients (19 English speaking, 11 Spanish speaking) plus 9 accompanying care partners, who had 2+ primary care encounters between March 1, 2020, and November 30, 2020, 2+ chronic conditions, and 1 or more self-reported social risks. Questions focused on access to and experiences with care, roles for care partners, and self-management during the first 6 months of the pandemic. RESULTS: Participants experienced substantial changes in care delivery. The most commonly reported changes were a shift to more virtual relative to in-person care and shifting roles for care partners. Changes fostered new perspectives on self-management and an appreciation of personal resilience and self-reliance. Virtual care was an acceptable complement to in-person care, though not a substitute for periodic in-person visits. It was more acceptable for English speakers and with a usual provider. CONCLUSION: New models of care delivery that recognize patient and family resilience and resourcefulness, emphasize provider continuity, and combine virtual and in-person care may support self-management for individuals with MCC and social needs.

Exploring the role of digital tools in rare disease management: An interview-based study.

While digital tools, such as the Internet, smartphones, and social media, are an important part of modern society, little is known about the specific role they play in the healthcare management of individuals and caregivers affected by rare disease. Collectively, rare diseases directly affect up to 10% of the global population, suggesting that a significant number of individuals might benefit from the use of digital tools. The purpose of this qualitative interview-based study was to explore: (a) the ways in which digital tools help the rare disease community; (b) the healthcare gaps not addressed by current digital tools; and (c) recommended digital tool features. Individuals and caregivers affected by rare disease who were comfortable using a smartphone and at least 18 years old were eligible to participate. We recruited from rare disease organizations using purposive sampling in order to achieve a diverse and information rich sample. Interviews took place over Zoom and reflexive thematic analysis was utilized to conceptualize themes. Eight semistructured interviews took place with four individuals and four caregivers. Three themes were conceptualized which elucidated key aspects of how digital tools were utilized in disease management: (1) digital tools should lessen the burden of managing a rare disease condition; (2) digital tools should foster community building and promote trust; and (3) digital tools should provide trusted and personalized information to understand the condition and what the future may hold. These results suggest that digital tools play a central role in the lives of individuals with rare disease and their caregivers. Digital tools that centralize trustworthy information, and that bring the relevant community together to interact and promote trust are needed. Genetic counselors can consider these ideal attributes of digital tools when providing resources to individuals and caretakers of rare disease.

Experiences of Parental Caregivers of Adults with Autism in Navigating the World of Employment.

PURPOSE: Caregiving often presents challenges for parents, particularly for parents of loved ones with disabilities or health challenges, who need and/or want to be employed. This study describes the employment experiences of aging parents as they continue to balance engagement in the paid workforce with the ongoing provision of care for their adult children with autism spectrum disorder (ASD). The purpose of this study was to examine the lived experiences of parents of adult children with ASD in the context of balancing career and caregiving responsibilities. METHODS: The current study uses a qualitative phenomenological research approach to describe the lived experiences of 51 parents who were caring for an adult child with ASD. The parents participated in telephone interviews to obtain information about their career experiences while providing care and support to their adult children with ASD. RESULTS: Three caregiving themes emerged including: (a) difficulty balancing caregiving with work responsibilities, (b) reasons for working, not working, or working intermittently, and (c) work as an escape or wanting to work more. CONCLUSION: As more individuals with ASD reach adulthood, often relying to varying extents on their families for daily support, parental employment will continue to be impacted as they juggle their career with caregiving responsibilities. Economically, one or more family members typically need to work to sustain the family's needs and employment support should be considered. As a society, families often need to make choices even with an adult child with ASD of who will work, how, and when.

Emergency Scenario-Based Training Curriculum Development: Enhancement of Caregivers for the Elderly' Emergency Assistance Competency in a Rural Thai Community.

Background: Caregivers for the elderly are a critical component of the health care system, especially in rural communities. They play a crucial role, assisting older people in confronting emergency illnesses. Objective: The study describes the process of developing an emergency scenario-based training curriculum (ESBTC) for caregivers of the elderly, focusing on geriatric life-threatening surveillance and emergency assistance (GLTSEA) in rural communities. Methods: The descriptive qualitative research utilized for developing the ESBTC followed Karn's six steps of curriculum development: (1) needs assessment, (2) targeted needs assessment, (3) goals and objectives, (4) educational strategies, (5) implementation, and (6) evaluation and feedback. The research sample comprised community representatives engaged in providing care during emergency illnesses, emergency experts, and health care providers. A group discussion and focus group were conducted along with semi-structured interviews. The data were analyzed by content analysis following Creswell's six steps. Results: The results revealed problems and needs related to the care and management of emergency illnesses in rural communities. Five main themes emerged, including insufficient knowledge, difficulties in communication, mindfulness and self-confidence, Unable to assess the initial symptoms, and a need for skills development. In the development step, the curriculum focused on skill development and continued follow-up to ensure necessary skills, such as providing basic life support, using automated external defibrillators, through training scenarios. In the evaluation step, the participants indicated that their emergency assistance skills had improved. The six main themes that emerged regarding the training continuity, courses, and competencies needed to support the emergency system for caregivers were benefits and value, competence enhancements, upstreaming confidence, sustainable development, challenges in curriculum development, and effective strategies. Conclusions: The ESBTC combines community-based and realistic scenarios, involving the participation of community stakeholders. It is crucial to gather community feedback and needs assessments to formulate potential strategies as part of the curriculum.