Caregiver Issues Research Articles

The impact of an applied menstrual self-care education program given to adolescents with intellectual disabilities and their mothers on their knowledge, skills, and anxiety levels

Objectives This study aimed to examine the effect of an applied menstrual self-care management education program provided to adolescents with intellectual disabilities and their mothers on their knowledge, skills, and anxiety levels. Methods A quasi-experimental design based on pre-test and post-test models was conducted with two different groups. The population consisted of adolescents with intellectual disabilities attending three special education and rehabilitation centers in a province and their mothers, while the sample included 32 adolescents with intellectual disabilities and their mothers who met the research criteria. Data were collected using a Demographic Information and Menstrual Characteristics Form and the Beck Anxiety Scale. Descriptive statistical methods (Mean, Standard Deviation) and t-test were employed. Results The applied education program provided education to both mothers and adolescents with intellectual disabilities using a simulator model demonstrating the perineal area and a guide developed for menstrual self-care, and they were asked to perform the practices. Following the education, both mothers and adolescents with intellectual disabilities showed effective gains in knowledge and skills, while also experiencing a reduction in anxiety. Conclusions Providing the same education to both mothers and adolescents with intellectual disabilities not only reduced potential caregiving issues but also facilitated communication between the adolescent and the mother. The study enabled adolescents with intellectual disabilities to realize their potential and decreased dependency on their mothers for care.

Uncertainties of healthcare professionals and informal caregivers in rare diseases: A systematic review

Uncertainties, defined as metacognitive awareness of ignorance, are an essential part of medicine. Consequently, healthcare professionals (HCPs) as well as informal caregivers face them inevitably. Depending on the interpretation of uncertainties and the existence of available resources to cope with them, uncertainties might have serious consequences. Studies showed higher burnout-rates and reduced psychosocial well-being of HCPs and informal caregivers. Especially rare diseases are linked with a variety of uncertainties, as knowledge about specific diseases is often limited which might result in a higher burden of both groups. This review aimed at summarizing studies dealing with HCPs' and informal caregivers’ uncertainties in the context of rare diseases. We searched five databases and screened 11.236 records for title/abstract and 105 records for full-text. Finally, 24 studies were subjected to quality assessment and data extraction using narrative synthesis. Five studies focused on HCPs, 19 on informal caregivers. Results were clustered using an existing taxonomy differentiating three categories of uncertainty (scientific, practical and personal) and issues, specifying particular uncertain situations or circumstances. Only five of the included studies investigated the perspective of HCPs, indicating a research gap of the topic within this group. Reports were mostly limited to practical and scientific uncertainties. Concerning scientific uncertainties, information procurement showed up as a special facet in rare diseases. Informal caregivers reported the whole variety of scientific, practical and personal uncertainties, leading to psychological consequences such as fear, confusion and worry. This review provides an overview of categories and assigned issues of uncertainties HCPs and informal caregivers experience in relation to rare diseases and psychological consequences. Results can be used in the development of trainings, to teach effective coping strategies when dealing with uncertainties or offers of psychosocial support.

Factors influencing the positive aspects of caring for dementia patients by family caregivers: a systematic mixed studies review protocol

AimTo provide an overview of the various influencing factors related to the positive aspects of caring for dementia patients by family caregivers.DesignA systematic mixed studies review.MethodsThe Preferred Reporting Items for Systematic Reviews guided this protocol as reported. Peer-reviewed studies published in English from 1997 to the present will be searched via information sources, gray literature, and the following databases: Web of Science, PsycINFO, PubMed, EMBASE, CINAHL and the Cochrane Central Register of Controlled Trials. Eligible trials will also be retrieved from ClinicalTrials.gov and the World Health Organization International Clinical Trials Registry Platform. This will be a mixed studies review. The Mixed Method Appraisal Tool will be used for the mixed-method studies. The Newcastle–Ottawa Scale for case–control and cohort studies and the JBI quality scale for cross-sectional and interventional (i.e., randomized or quasi-experimental) studies will be consulted. The Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research will be used for the qualitative studies. All the data will be extricated with JBI data extraction tools. The convergent synthesis method will be used in the review.DiscussionThis systematic review will synthesize and analyze the factors that influence the positive aspects of caring for dementia patients by family caregivers.ConclusionThe findings will help decision-makers to adopt more appropriate and effective interventions for caregivers of people with dementia.Patient or public contributionsThis review protocol will ascertain the factors affecting the mediation of and path to improved caregiving, explore the factors’ action mechanisms, and examine the controlling factors to design a more targeted intervention program to improve caregiving, thus improving dementia patients’ outcomes and care. Contributions of the findings will include evidence of strategies that address ongoing dementia caregiving issues and the identification of areas for future research.

Associations of mental health with vaccination readiness in informal caregivers and the vaccination status of their care recipients during the Covid-19 pandemic – A cross sectional analysis

IntroductionVaccinations are important for informal caregivers and their care recipients. Mental health problems are common among care givers. The aim of this study was to investigate vaccination readiness in informal caregivers and associations with mental health issues. Associations between vaccination readiness in informal caregivers and the vaccination status of their aged care recipients were examined. MethodsWithin the multicenter prospective registry study ‘Bavarian ambulatory Covid-19 Monitor (BaCoM) ‘, informal caregivers were asked for symptoms of depression (PHQ-9), burden of caretaking (BSFC-s), psychological antecedents of vaccination readiness (5C model) and previous Covid-19 infections of their care recipients. The vaccination status against Covid-19, seasonal influenza and pneumococcal disease was determined via vaccination certificates. Data analysis was performed using ordinal regressions and Mann-Whitney-U tests. ResultsData of n = 91 informal caregivers, associated with n = 84 care recipients were collected. Symptoms of depression were associated with reduced vaccination readiness (Calculation: p = 0.026, OR = 1.18), as well as the perceived burden of caretaking (Confidence: p = 0.006, OR = 0.88). A previous Covid-19 infection of the care recipients was associated with decreased vaccination readiness of informal caregivers (Median (Q1–Q3) Confidence: 5.0 (4.5–6.0) vs. 4.0 (3.0–5.0); Calculation: 5.0 (3.0–6.0) vs. 4.0 (1.0–5.0)). The vaccination status of the care recipients interrelated significantly with vaccination readiness of their informal caregivers (Confidence: p < 0.001; Complacency: p < 0.01; Constraints p < 0.05). No significant interrelations between vaccination readiness and the vaccination status against seasonal influenza or pneumococcal disease occurred. ConclusionMental health issues of informal caregivers seem to be associated with the actual vaccination status against Covid-19 in their care recipients. Target group specific counselling as well as an active involvement of informal caregivers in shared decision-making processes can be of relevance, but even more attention should be paid to the protection of mental health for informal caregivers.Trial registration number: German Register of Clinical Studies DRKS 26039.

Efficacy and Implementation Planning Across the Veterans Affairs Polytrauma System of Care: Protocol for the REACH Intervention for Caregivers of Veterans and Service Members With Traumatic Brain Injury.

The responsibility of care for Veterans and Service Members (V/SMs) with traumatic brain injury (TBI) often defaults to informal family caregivers. Caregiving demands considerable knowledge, skill, and support to facilitate the health and well-being of V/SMs and themselves. Persistent and common TBI caregiver issues include strain, depression, and anxiety. While evidence-based, brief interventions have been developed and implemented for family caregivers in Veteran neurodegenerative populations, few interventions have been developed, adapted, or tested to support the unique needs of caregivers of V/SMs with TBI. This study will adapt and test an evidence-based, personalized, 6-session telehealth caregiver intervention, "Resources for Enhancing All Caregivers' Health" (REACH), to meet the unique needs of caregivers of V/SMs with TBI. If successful, a community-based participatory research team will develop an implementation plan to roll out REACH TBI across the national Veterans Affairs Polytrauma System of Care. This mixed methods, crossover waitlist control clinical trial will use a Type 1 Hybrid Effectiveness-Implementation approach to adapt and then test the effects of REACH TBI on key TBI caregiver outcomes. This study was funded by the Department of Defense in September 2023. Participant enrollment and data collection will begin in 2024. If effective, REACH TBI will be the first evidence-based intervention for caregivers of V/SMs with TBI that can be scaled to implement across the Veterans Affairs Polytrauma System of Care and fill a notable gap in clinical services. PRR1-10.2196/57692.

Occupational Health and Safety Challenges Faced by Caregivers and the Respective Interventions to Improve their Wellbeing

This research aimed to identify the occupational health and safety issues in caregivers' workplaces: physical hazards, psychological demands, and organisational dimensions. This concerned broad physical dangers for workers, including musculoskeletal diseases, infection risks, toxic materials and substances, fatigue, and extended working hours. Additionally, the existing works explored the impact of psychological factors such as emotional exhaustion, compassion stress, burnout, stress, anxiety, and even secondary traumatisation on caregivers. Furthermore, it analysed the systematic issues related to workplace violence, lack of personnel, poor training and professional development, and having fewer protective gear and safety measures. The research has illustrated various interventions and practices that might enhance occupational safety and caregivers' wellbeing. These include organisational policies and procedures, such as establishing safe operating procedures, ensuring adequate protective gear is supplied to workers, and promoting a healthy company culture with efficient support networks. Risk prevention measures in this subdivision include safe patient handling procedures recognised as necessary in reducing physical risks, ergonomic workstation and equipment design, and stretching and exercise promotion. Moreover, the study revealed that while mental support and wellbeing were deemed essential for the workforce, which includes EAP, stress control, and mental toughness, seminars, as well as support groups, were considered insufficiently developed. The study finally demonstrated the importance of policy and legal advocacy based on enhancing occupational health and wellness standards, better workers' compensation and benefits, and raising public awareness.

Critical Issues for Patients and Caregivers in Neuro-Oncology during the COVID-19 Pandemic: What We Have Learnt from an Observational Study.

The COVID-19 pandemic affected neuro-oncological patients and their caregivers regarding tumor care and emotional functioning, including Quality of Life (QoL). This study aimed to understand how COVID-19 affected their psychological state and the relations between patients and health personnel in neuro-oncology. A cross-sectional study was conducted on neuro-oncological patients and their caregivers. A total of 162 patients and 66 caregivers completed the questionnaire. Altogether, 37.5% of patients perceived a greater risk of contracting COVID-19 compared to the general population. On a 0-10 scale, the patients' tumor-related anxiety score was 5.8, and their COVID-19-related score was 4.6. The caregivers reported 7.7 and 5.5, respectively. QoL was described as at least good in 75% of both patients and caregivers; the caregivers' care burden increased in 22.7% of cases during the pandemic, with no correlation with QoL. Future perception often changed, both in patients and caregivers. In 18% of cases, the cancer treatment schedule was changed, either by patient decision or by medical decision. However, 93.5% of patients were satisfied with their overall care. A considerable proportion of patients and caregivers still perceived the tumor disease as more burdensome than the pandemic, and their future as more uncertain. Such data suggest the need to build a productive alliance between patients and health professionals.

Pushing the boundaries: an evaluation of the Photographs of Meaning (POM) program for pediatric palliative caregivers (PPCGs)

ABSTRACT Translational research is seemingly ubiquitous, yet complex and difficult to concretely define. We contribute to this conversation by reflectively and critically evaluating a collaborative, multidisciplinary program called the Photographs of Meaning (POM) for pediatric palliative caregivers. The POM program brings together the public health issue of caregiving with community-based-art methodology and engagement. Following four stages for public health research; assessment, design, implementation, and evaluation, we focus on photovoice as a valuable methodological tool that can be integral to translational work in communication. The program evaluation illustrates the main points of translation from the first iteration of POM to the second, as we challenge the traditional ‘bench to bedside’ notion of translational research and offer a more relational approach where communication scholars can engage participants and community networks through photographs. We end with implications and recommendations for scholars working with pediatric palliative caregivers and public health research more generally.

Parental emotional, social and transitional health in the first 6 months after childhood critical illness: A longitudinal qualitative study

AbstractAimTo explore the experiences and support needs of parents in the first 6 months after paediatric critical care.DesignLongitudinal qualitative design.MethodsSequential semi‐structured qualitative interviews were conducted with a sample of 28 parents in succession at 1 month and at 6 months (n = 22) after their child's discharge from paediatric critical care using purposive sampling. Data were analysed using the adapted five‐stage framework analysis.ResultsData were developed into eight synthesized themes, three domains and an overarching theme: Regaining Normalcy. Families of children requiring medical treatment at 6 months showed signs of adaption to daily care routines. The two domains were Parental Emotional Health and Parental Social Health. Parental Transitional Health, a third domain, was added to the Post Intensive Care Syndrome‐paediatric framework. Parents were forward‐looking and discussed emotional health, relating to current caregiving issues. Emotional attention was related to present challenges and concerns about current health and possible readmission to the hospital. In terms of Parental Social Health, families isolated themselves for infection control while remaining connected with families using chat applications. Parents were selective to whom they allowed access to their lives. The impact of parental transitional health was evident and emphasized the daily challenges associated with integration back to home life. Flexible work arrangements allowed working parents to support caregiving needs in the first 6 months after discharge.ConclusionIn the first 6 months after paediatric critical illness, most families reported having moved past the experiences while having provoking memories of the admission period. Parents viewed the point of normalcy as child returned to school or when all medications were discontinued. Extension of transitional support can facilitate discharge experiences between paediatric critical care and normalcy. The findings highlight the importance of understanding the medium‐ and longer‐term impact of paediatric critical care.Impact What problem did the study address? Limited understanding of long‐term parental experiences and support needs after PICU discharge. What were the main findings? Most families regained normalcy when child returns to school or when medications were discontinued. Some families continued to show signs of adaptations at 6 months after PICU discharge. Where and on whom did the research have an impact? The research has an impact on improving the understanding of long‐term parental experiences and support needs after PICU discharge, informing clinical practice, guiding policy development and shaping parental support programs. Reporting MethodWe reported this study using the COREQ guidelines.Patient or Public ContributionPrior to confirming the interview guide, three parents of critically ill children actively participated by reviewing and providing feedback on its content. They provided suggestions to refine the wording and ensure clarity to enhance the participants' understanding. By including the perspectives of these parents, we aimed to improve the overall quality and relevance of the interview guide.

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

BackgroundFamily 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.MethodsWe 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.ResultsOlder 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.ConclusionIn 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.

Resilience among Caregivers of the Pediatric Cancer Patients

Abstract Backgound: Studies portray that one in every nine Indians develops cancer during their lifetime. Admissions to the Pediatric Oncology departments are increasing like any other department. Cancer affects not only the patients but also their caregivers both physically and psychologically. Aims and Objectives: In this scenario, the study aims to understand the caregivers’ level of resilience and the associated risk and protective factors. Materials and Methods: This descriptive study was conducted in Kerala. Sixty caregivers of the children in the age group between 1-17 years, diagnosed with cancer were selected for the study. Mexican Resilience Scale and self-prepared interview schedule were used to collect the quantitative data. Qualitative data were collected using an in-depth interview guide. Results: The study found that the majority of the respondents are moderately resilient, with men exhibiting higher resilience than women. The prime factors contributing to resilience were identified as strength and self-confidence, social competence, family support, social support, and structure. The study further identified individual factors (flexibility, emotional stability, etc.), familial factors (positive family environment), and community factors (support from NGOs and support groups, etc.) as protective factors contributing to resilience. Additionally, the study revealed how individual (lack of emotional stability, introverted nature, etc.), familial (relationship issues), and community (social perceptions about the disease) levels of risk factors impact resilience. Conclusion: The importance of strengthening the support systems around the caregivers and importance of oncology social worker to deal with the psychosocial issues of patients and caregivers are also discussed in this paper.

Patients with advanced cancer and their spouses parenting minor children: The role of the relationship context in parenting concerns.

Patients with advanced cancer who parent minor children report parenting concerns and increased psychological distress. This cross-sectional study seeks to understand parenting-related issues in patients and spousal caregivers from a relationship perspective. Patients with a metastatic solid malignancy and their spouses independently completed cross-sectional assessments of psychological distress (Hospital Anxiety and Depression Scale), parenting concerns (Parenting Concern Questionnaire) and efficacy (Cancer-Related Parenting Self-Efficacy Scale), and relationship measures (DAS-7, Couples' Illness Communication Scale, and Family Relationship Index). Of the 51 patients (57% female, 49% NHW, mean age 42years) and spouses (43% female, 43% NHW, mean age of 42years), approximately 50% couples endorsed psychological distress and were at risk for family dysfunction. Spouses reported significantly higher levels of parenting-related concerns (t=-2.0, p<0.05) and anxiety (t=-2.8, p<0.001) than patients. Parenting concerns were significantly associated with illness communication (r=-0.56, p<0.001) and family function (r=-0.38, p<0.001). Although the expected interactions between parenting concerns and relationship variables (i.e., illness communication, dyadic adjustment, and family function) were significant for depressive symptoms at p<0.05, the associations were not in the expected direction. Relationship function buffered against depressive symptoms for those with low rather than high parenting concerns. Not only patients but also spouses report cancer-related parenting concerns. The associations between parenting concerns and distress were stronger for spouses than patients. Dual caregiving appears to be a particularly stressful role. Because relationship function was associated with parenting concerns, we suggest that parent support programs that are couple-based and include both parenting-specific and relationship-specific content may be most effective in reducing distress for this vulnerable population.

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy.

Obesity disproportionately affects children and adolescents with Duchenne muscular dystrophy (DMD) and with adverse consequences for disease progression. This study aims to: explore barriers, enablers, attitudes, and beliefs about nutrition and weight management; and to obtain caregiver preferences for the design of a weight management program for DMD. We surveyed caregivers of young people with DMD from four Australian pediatric neuromuscular clinics. Survey questions were informed by the Theoretical Domains Framework and purposefully designed to explore barriers and enablers to food and weight management. Caregivers were asked to identify their preferred features in a weight management program for families living with DMD. Fifty-three caregivers completed the survey. Almost half (48%) perceived their son as above healthy weight. Consequences for those children were perceived to be self-consciousness (71%), a negative impact on self-esteem (64%) and movement (57%). Preventing weight gain was a common reason for providing healthy food and healthy eating was a high priority for families. Barriers to that intention included: time constraints, selective food preferences, and insufficient nutrition information. Caregivers preferred an intensive six-week weight management program addressing appetite management and screen time. Managing weight is an important issue for caregivers of sons with DMD; yet several barriers exist. Individualized 6 week programs are preferred by caregivers to improve weight management for DMD.

Neurological patients confronting climate change: A potential role for the glymphatic system and sleep

Interest in the health consequences of climate change (global warming, heatwaves) has increased in the neurological community. This review addresses the impact of elevated ambient temperatures and heatwaves on patients with neurological and mental health disorders, including multiple sclerosis, synucleinopathies, dementia, epilepsies, mental health, and stroke. Patients with such conditions are highly vulnerable during heatwaves because of functional disorders affecting sleep, thermoregulation, autonomic system reactivity, mood, and cognitive ability. Several medications may also increase the risk of heatstroke. Special attention is devoted to the involvement of common underlying mechanisms, such as sleep and the glymphatic system. Disease prevention and patient care during heatwaves are major issues for caregivers. Beyond the usual recommendations for individuals, we favor artificially induced acclimation to heat, which provides preventive benefits with proven efficacy for healthy adults.

Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis.

Exploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and understanding their original concerns instead of presumed needs. Hence, this study aims to identify and describe the primary concerns and challenges faced by caregivers of children with complex chronic conditions in a tertiary care hospital in Kerala. Primary caregivers of 25 children aged <13 years with non-malignant life-limiting illnesses, admitted to the paediatric department of a government medical college in Kerala between 1 July 2021 and 28 February 2022, underwent in-depth interviews to analyse their most worrisome issues. Thematic analysis was the method chosen for qualitative data analysis. The main themes identified were medical issues, unmet needs, caregiver health issues, and social and financial issues. Among the medical issues, poor seizure control and infected bedsores, sleep deprivation in both patient as well as caregivers, and difficulty in maintaining the personal hygiene of patients were the major issues. Parents of almost all the CICs reported that they required diapers more than any other material or device. Maternal depression was the major caregiver health issue. The unavailability of antiepileptic drugs in peripheral health centres resulted in missing doses and undue expenses for travel to tertiary centres to obtain the same. Caregivers reported their dismay when they finally realised that they were given false hopes of a cure by different systems of medicine. The challenges faced by caregivers of children with complex chronic conditions are multifaceted. Their most problematic issues related to medical issues are the occurrence of breakthrough seizures and development of infected bedsores. The most important material hardship reported was diaper needs. Caregiver issues such as sleep deprivation and maternal depression must be identified and addressed while providing comprehensive palliative care.

Creating Cultural and Lifestyle Awareness About Dementia and Co-morbidities.

Dementia is a major health concern in society, particularly in the aging population. It is alarmingly increasing in ethnic minorities such as Native Americans, African Americans, Hispanics/Latinos, and to some extent Asians. With increasing comorbidities of dementia such as diabetes, obesity, and hypertension, dementia rates are expected to increase in the next decade and beyond. Understanding and treating dementia, as well as determining how to prevent it, has become a healthcare priority across the globe for all races and genders. Awareness about dementia and its consequences such as healthcare costs, and caregiver burden are immediate needs to be addressed. Therefore, it is high time for all of us to create awareness about dementia in society, particularly among Hispanics/Latinos, Native Americans, and African Americans. In the current article, we discuss the status of dementia, cultural, and racial impacts on dementia diagnosis and care, particularly in Hispanic populations, and possible steps to increase dementia awareness. We also discussed factors that need to be paid attention to, including, cultural & language barriers, low socioeconomic status, limited knowledge/education, religious/spiritual beliefs and not accepting modern medicine/healthcare facilities. Our article also covers both mental & physical health issues of caregivers who are living with patients with dementia, Alzheimer's disease, and Alzheimer's disease-related dementias. Most importantly, we discussed possible measures to create awareness about dementia, including empowering community advocacy, promoting healthy lifestyle choices, education on the impact of nutrition, encouraging community participation, and continued collaboration and evaluation of the success of dementia awareness.

Investigating how telephone‐based mindfulness training impacts family conflict and communication for rural African American dementia caregivers

AbstractBackgroundOlder African Americans (AA) are disproportionately affected by Alzheimer’s disease and related dementias (ADRD). In turn, AA ADRD caregivers are more likely to provide in‐home care while being less likely to use respite services as compared to White caregivers. Caregiving for people with ADRD is associated with considerable physical, financial, and emotional strain (Alzheimer’s Association, 2022). Mindfulness‐based interventions (MBI) can be effective at addressing these issues for ADRD caregivers and have been found to be culturally acceptable for AA caregivers (Woods‐Giscombé et al., 2014). However, few studies have tested targeted MBI on rural AA caregivers. As part of a broader study, we investigated the effects of a telephone‐delivered MBI on AA ADRD caregiver burden and relevant secondary outcomes for both caregiving team members. The purpose of this study is to explore how mindfulness training impacts family conflict within the informal caregiving team.MethodPrimary caregivers and care partners of people with dementia participated in an eight‐week MBSR training program consisting of eight telephone‐delivered, instructor‐led classes and one virtual retreat. Post‐participation interviews with study participants (n = 51) were analyzed using Atlas.ti to assign descriptive meaning to sections of the data. After all codes were finalized, a detailed codebook was created, which included each code, its definition, and an example quote, along with any comments.ResultOur analysis revealed four key themes illustrating how the mindfulness intervention served to positively impact family conflict and communication among participating caregivers. Mindfulness training: 1) is helpful in resolving present family conflict; 2) provides tools for future conflict resolution; 3) helps the caregiver feel more present/in control despite family conflict; and 4) enriches already positive family connections.ConclusionNearly all caregivers described the intervention as being helpful in resolving current family conflict, and those caregivers who did not endorse present family conflict stated that the mindfulness training provided tools for alleviating future conflict should it occur. Most caregivers reported that the intervention helped them to feel more present and better able to work through conflict when family miscommunication did occur. Similarly, caregivers confirmed that mindfulness training acted to reinforce already positive family connections.

Transportation Cost Is a Significant Barrier to Quality Care for Hematologic Malignancy Patients in a Minority-Rich, Socioeconomically Disadvantaged Population

Background Transportation to and from clinics is a barrier to care for cancer patients. Depending on treatment regimen, patients' clinic visits could be frequent, and this could lead to cumulative financial toxicity. We aim to study transportation costs as a barrier to care in hematologic malignancy patients with new cancer diagnosis and in patients referred for cellular therapy at a tertiary care academic Medical Center located in Bronx, NY. A deeper understanding of the role of financial toxicity in relation to transportation will help to understand the effect this may have on health outcomes and ways to overcome this barrier to medical care that predominantly affects minorities from low socioeconomic backgrounds. Methods This is an ongoing prospective survey-based study carried out at Montefiore Medical center, Bronx NY. Adult patients with either a newly diagnosed (ND) hematologic malignancy (HM) or those undergoing cellular therapy (CT), such as autologous, allogeneic stem cell transplant or CAR-T therapy are identified at Montefiore Oncology clinics. Patients who agree to participate are given a research team generated 5-question survey to gauge their concerns surrounding transportation for oncology visits. Responses are grouped according to cohort (ND vs CT). Sociodemographic information was collected, and race and ethnicity were self-identified. For patients with long-term follow-up, we also capture no-show rates. The study is approved by the local IRB. Results There were 72 patients across groups at the time of analysis. Forty-one patients completed surveys for the ND group and 31 for the CT group. Twelve (29%) and three (7%) patients identified their race as Black and White respectively in ND group with 8 (26%) and 4 (13%) as Black and White in the CT group, respectively. In ND, 22 (54%) patients identified their ethnicity as Hispanic/Latino with 17 (55%) in CT. The median distances between Montefiore Hospital and the patient's homes according to zip code were 3.59 miles (mi) with range 0-81.42 mi for ND and 3.47 mi with range 0-50.35 mi in the CT group. Nearly 50% of patients in ND and CT groups reported concerns about access and cost of transportation to the oncology clinic. Insurance paid for transportation for only 12.5 and 17.9% of patients in ND and CT groups, respectively. Across groups, over half of patients (52.5%) used a personal vehicle to get to appointments in the ND group with 46.5% in the CT group. Many of patients in the ND (18%) and CT (17%) group reported missing their appointments due to transportation issues. Ten percent of patients in ND and 13% in CT groups reported missing appointments due to caregiver issues. Fifty-nine percent of patients in ND and 47% in CT groups reported feeling comfortable with phone/video visits. Of patients with long term follow up and &amp;gt;10% no-show rates, 60% in ND and 50% in CT groups use a personal vehicle. Conclusion We report preliminary results from an ongoing prospective study evaluating transportation barriers to care for hematologic malignancy patients in an underserved population in Bronx. Even in a well-connected city such as New York City, half of patients with new hematologic cancer and those referred for cell therapy are worried about access and cost of transportation to and from medical appointments. Although the distance between clinic and home is less than 5 miles for over half of patients, patients are still missing appointments due to transportation and caregiver issues. Patients who travel using personal vehicles may also have difficulty driving due to chemotherapy or being accompanied for visits due to caregiver issues. As many novel cellular therapies recently approved are only available at tertiary centers, transportation is expected to be a bigger factor affecting social determinants of health. One potential solution is to incorporate more tele-visits as nearly half our patients are amenable to them. More information including follow-up surveys and the number of missed appointments is being collected to identify specific groups of patients who will benefit from interventions.

Risk and protective factors for African American kinship caregiving: A scoping review

BackgroundAfrican American children are disproportionately placed in kinship care, specifically with kin caregivers who have pressing service needs given their relatively poor physical and mental health, and low economic status. Kinship caregivers often face challenges, however, they also show resilience when raising relative children. Although the literature has examined risk and protective factors that affect kinship caregiving, no scoping review has been conducted to summarize these factors as they relate to African American kinship caregivers. ObjectivesThis study aims to summarize the risk and protective factors that affect African American kinship caregiving. MethodsTwenty-six studies were identified from this scoping review. A data template was used to extract information on data/sample, research methods, and risk and protective factors. ResultsThis review found that the risk and protective factors in the identified studies can be summarized into four types: child, caregiver, relationship, and legal, cultural or social issues. Caregiver factors were examined from the perspective of physical and behavioral health, parenting, and resources. The most common risk factors were caregivers’ low social economic status or great financial need, and caregivers’ physical health. The most common protective factor was caregivers’ spirituality or religion. DiscussionThis review helps to better understand the risk and protective factors for African American kinship caregivers. Policies should be informed by African American kinship caregivers’ unique qualities to provide useful cultural solutions. Evidence based interventions should be developed and provided to African American kinship caregivers to improve their parenting abilities and to provide them with additional resources and supports. Implications for child welfare research are also presented.

Can collaboration among health and social care workers play a role in addressing geriatric care challenges? A qualitative case study in Central Vietnam.

Vietnam's healthcare system offers limited services and facilities for older adults. This study explored the perceptions of health and social care workers regarding geriatric care issues, their impact on older adults and the potential of collaboration for enhancing older adults' health and well-being. This qualitative case study employed 27 focus group discussions and two in-depth interviews with 174 participants in Thua Thien Hue Province, Vietnam. An inductive thematic analysis was conducted. According to the participants, the major challenges that hindered geriatric care consisted of caregiver and care recipient issues, which were identified to constrain care accessibility, resulting in decreased physical, mental and social health. Across different settings and professions, collaboration was considered a routine and natural aspect of daily work. It was perceived that establishing and strengthening collaboration could facilitate improvement in health and social welfare services through the prioritization of needs and enhancement of caregiver skills and training. Collaboration was viewed as ad hoc but indispensable for addressing the identified geriatric care issues that could improve the general health and well-being of older adults. The findings indicate a need for better collaboration in Vietnam, achieved through defined guidelines, training and improved interprofessional education and practice.