Caregiver Program Research Articles

Elderly Cruelty: What is the Role of the Caregiver?

Objective: The objective of this study is to identify studies on the prevalence of abuse in the elderly and to estimate the profile of the caregiver of the elderly and the possible reasons that lead them to present a relationship of mistreatment towards the elderly. Theoretical Framework: Population aging is a global phenomenon that has led to an increase in the demand for long-term care for the elderly. In this context, the role of the caregiver, whether formal or informal, becomes crucial for the well-being of this population. Method: Systematic review of population-based studies in electronic databases (PubMed and LILACS), covering the last 15 years. Population-based studies were included and studies without a defined methodological definition were excluded. Results and Discussion: Thirty-eight articles were found, but only 13 articles were selected. The prevalence studies found coefficients of mistreatment, with physical abuse between 1.2% and 18%. The overload of daily primary care and the lack of careful assessment and subsequent appropriate treatment of the caregiver appear to be related to this relationship of mistreatment. Research Implications: The research may influence the formulation and implementation of public policies aimed at protecting the elderly from abuse. This includes the creation of training programs for caregivers and the strengthening of legislation that protects the elderly. Originality/Value: Although there are several studies on mistreatment of the elderly, the originality of this research lies in its specific approach to the role of caregivers, both formal and informal, in the occurrence or prevention of such mistreatment.

Navigating Life With Parkinson's Disease: A Focus Group Study on Coping Strategies and Considerations for Self-Management Support.

To investigate the experiences of people with Parkinson's disease in coping with and adapting to their disease and to identify considerations for a tailored self-management support program. A descriptive phenomenological focus group study. Five semi-structured focus groups were conducted between April 2023 and June 2023 in the Netherlands, with 12 people with Parkinson's disease. Two researchers independently performed an inductive content analysis. Three principal categories emerged: (1) Rational realisation versus emotional experience: the coping strategy transition. This category includes three main coping strategies: denial or avoidance coping, acknowledging with less active coping and proactive and task-oriented coping. (2) Factors that influence coping, including mindset and skills, social circles and communication and access to support and care. (3) Considerations for successful self-management of Parkinson's disease, highlighting key areas such as psycho-emotional guidance, nutrition and lifestyle, peer support and maintaining autonomy and sense of identity. Coping and adaptation strategies are individual and dynamic processes, with multiple key or turning points during the transition between strategies. Tailored self-management support can enhance coping abilities during these transitions, fostering adaptation to a life with Parkinson's disease. A patient-focused version of an existing blended self-management support program for family caregivers will be developed, which will be delivered by healthcare professionals. This study can help healthcare professionals tailor support for people with Parkinson's disease, emphasising their role in facilitating coping and adaptation. Enhancing self-management can improve self-efficacy, quality of life and potentially reduce healthcare utilisation in people with Parkinson's disease. Findings are reported according to the COREQ guidelines. Patients and Parkinson's disease experts participated in the preparation and implications of the findings. All participants could contribute to the self-management support program, either through video interviews or content feedback.

Examining posttraumatic growth among Turkish family caregivers of cancer patients

Cancer is a deadly disease that affects millions of people worldwide and is a source of great difficulty, stress, and trauma not only for patients but also for their caregivers. The physical and emotional suffering that patients experience by patients can lead their caregivers to cope with constant anxiety, sadness, and uncertainty. Moreover, during the cancer treatment process, caregivers must make a great effort to meet the needs of patients and support them. This situation may negatively affect the quality of life and psychological health of cancer patients’ caregivers and may lead them to experience trauma. The aim of this cross-sectional study was to examine posttraumatic growth’s relationship with age, the transformative power of suffering, and hope in family caregivers of cancer patients. Participants consisted of 314 Turkish family caregivers of cancer patients (73.2% women; Mage = 39.89 years) selected by using convenience sampling method. Participants answered a data collection tool consisting of a demographic information form, the Posttraumatic Growth Inventory, Trait Hope Scale, and Transformative Power of Suffering Scale. Data were analyzed using descriptive statistics, the Pearson product-moment correlation coefficient analysis, simple mediation analysis, and moderated mediation analysis. The results of this study revealed that hope mediated the association between the transformative power of suffering and posttraumatic growth in family caregivers of cancer patients, whereas age moderated this relationship. Psychosocial support programs for cancer caregivers could benefit from incorporating interventions that explore the transformative potential of suffering and cultivate hope. Tailoring these interventions to address the specific needs of different age groups may enhance their effectiveness. Future researchers should investigate the factors associated with posttraumatic growth in caregivers across diverse cultures, age ranges, and cancer diagnoses.

The Positive Behavioral Management Strategies Program (PBMS) for Parents, Teachers, and Caregivers: Impacts and Outcomes

The Positive Behavioral Management Strategies Program (PBMS) for Parents, Teachers, and Caregivers: Impacts and Outcomes

Effectiveness of a training program for caregivers of institutionalized older people on sedentary behavior, physical activity, and functionality of residents

Training caregivers of institutionalized older adults about an expanded care approach seems to be a way to maintain the resident's capabilities from the long-term care perspective. Objective: to analyze the effectiveness of training for caregivers of institutionalized older adults on sedentary behavior (SB), physical activity (PA) levels, and functionality of residents. Methods: Instructional training (four weeks) followed by the caregiver goal application period (12 weeks). Primary outcomes: Sedentary behavior (accelerometry) and functional mobility (Timed Up and Go). Secondary: physical function (SPPB), the performance of activities of daily living (Barthel Index), physical activity (accelerometer), handgrip strength, and anthropometric measurements. All analyses were conducted according to the intention-to-treat principle. Generalized Estimating Equations (GEE) and the Bonferroni post-hoc test were applied for comparison between time points (pre and post-intervention) and groups (p<0.05). Results: 49 older adults participated in the study, 25 of which comprised the intervention group (IG) and 24 the control group (CG). There was a group and time interaction effect, and the IG showed a reduction in SB (p=.017), increased light PA (p=.006), and total PA (p=.018). There were no changes in moderate PA and functionality. Although not statistically significant, the Barthel Index increased by 6.8 points in the IG, a clinically meaningful difference. Conclusion: The caregiver training strategy can be important in reducing SB and promoting participation in PA, which is relevant, considering the profile of the institutionalized older adult population. Keywords: Sedentary Behavior; Physical Functional Performance; Older Adults; Caregivers; Nursing home.

Virtual Reality-Based Psychoeducation for Dementia Caregivers: The Link between Caregivers' Characteristics and Their Sense of Presence.

In neuropsychology and clinical psychology, the efficacy of virtual reality (VR) experiences for knowledge acquisition and the potential for modifying conduct are well documented. Consequently, the scope of VR experiences for educational purposes has expanded in the health field in recent years. In this study, we sought to assess the effectiveness of ViveDe in a psychoeducational caregiver program. ViveDe is a VR application that presents users with possible daily life situations from the perspective of individuals with dementia. These situations can be experienced in immersive mode through 360° video. This research aimed to ascertain the associations between the sense of presence that can be achieved in VR and some users' psychological characteristics, such as distress and empathetic disposition. The study involved 36 informal caregivers of individuals with Alzheimer's disease. These participants were assessed using scales of anxiety and depression, perceived stress, empathy, and emotional regulation. They were asked to participate in a six-session psychoeducation program conducted online on dementia topics, in addition to experiencing the ViveDe application. The immersive VR sessions enabled the caregivers to directly experience the symptoms of dementia (e.g., spatial disorientation, agnosia, difficulty in problem-solving, and anomia) in everyday and social settings. The results indicated that although the experience in ViveDe (evaluated using the XRPS scale and five questions about emotional attunement) showed efficacy in producing a sense of first-person participation in the symptoms of dementia, further research is needed to confirm this. The structural equation model provided evidence that the characteristics of individuals who enjoy the VR experience play a determining role in the perceived sense of presence, which in turn affects the efficacy of the VR experience as a psychoeducational tool. Further research will be conducted to ascertain the potential role of these elements in conveying change in the caregivers of people with dementia. This will help us study the long-term effectiveness of a large-scale psychoeducation program in VR.

Adapting the Parent Connector program for caregivers of adults with SMI: the Family Connector experience

Caregivers play an essential role in the recovery of their adult loved ones with serious mental illness (SMI). Promoting caregiver empowerment and well-being is critical but has often been overlooked. Family peer interventions are well-suited to fill this need; however, research is limited supporting their use with caregivers of adults with SMI. Our team is currently engaged in a study evaluating an adapted version of the evidenced-based Parent Connectors program1,2, renamed Family Connectors (FC), for caregivers of young adults recently discharged from the First Episode Psychosis program in New York (OnTrackNY). This paper, written collaboratively with family peer professionals, describes the adaptation process we followed to systematically document the family peer professional experience one year into delivering the FC program to this novel population. Modifications made to improve intervention fit included tailoring the content of the intervention, incorporating an outside approach into the program, lengthening the service in some cases, and adding a weekly peer supervision meeting. We hope that these insights are used to inform future efforts to advance support for families of loved ones with SMI, and more broadly, that our approach serves as a model for effective collaboration to improve the application of peer support services for unique groups.

Feasibility and acceptability of the World Health Organization’s iSUPPORT program for dementia caregivers in Uganda

Feasibility and acceptability of the World Health Organization’s iSUPPORT program for dementia caregivers in Uganda

A Mixed-Methods Approach to Assess Fidelity in the Delivery & Receipt of an Occupation-Based Wellness Program for Caregivers

Abstract Date Presented 03/23/24 An intervention’s fidelity allows confidence in the program’s outcomes and is needed for dissemination. This poster describes a mixed-methods fidelity assessment of an occupation-based wellness program for caregivers and its delivery and receipt. Primary Author and Speaker: Elizabeth Larson

Effectiveness of Psychoeducational Programs for Caregivers of Family Members with Chronic Disease: A Meta-Analysis

This research aims to evaluate the effectiveness of psychoeducational programs in Turkey to reduce the stress of caring for people with chronic illnesses. The psychological, emotional, and physical demands on caregivers, often leading to stress and burnout, underscore the need for such programs. Nine papers were included in a meta-analysis, and statistical analysis was conducted using JASP 0.12.2.0 software. The results showed that psychoeducational therapies significantly reduced caregivers' perceived load, supporting their inclusion in routine treatment for chronic illnesses. The research emphasizes the role of psychoeducational interventions in improving the experience of providing care by providing vital information, coping skills, and emotional support mechanisms. This can lead to better health outcomes and a higher quality of life for those with chronic illnesses. The report also underscores the need for caregiver support policies and programs in healthcare, acknowledging their crucial role in the healthcare ecosystem. Further research is needed to improve the design and content of psychoeducational programs to meet caregivers' diverse needs in various settings. This meta-analysis provides strong evidence of the benefits of psychoeducational programs in reducing stress and laying the groundwork for future studies and policy formulation to support caregiver support in chronic disease treatment.

The effectiveness of supportive management programs in caregivers of patients with heart failure: a systemartic review

Abstract Introduction Supportive management programs involving caregivers of heart failure (HF) patients may be beneficial not only for the patient, but also for the caregiver. This study aims to investigate the effectiveness of supportive management programs for caregivers in terms of quality of life (QoL), depressive and/or anxiety symptoms and caregivers’ burden. Methods A systematic review was conducted in order to identify interventional studies delivering supportive management programs to dyads and evaluating the effectiveness for caregivers in terms of their QoL, depressive symptoms and burden. A systematic search in PubMed, CINAHL, and the Cochrane Library was performed. Inclusion and exclusion criteria and the Preferred Reporting Items (PRISMA) statement checklist were used. Fourteen randomized (RCT’s) and interventional studies were included. Results Fourteen articles were included in the review from a pool of thirty-five papers. A large heterogeneity was observed among the studies regarding several aspects; the intervention as such (e.g psychological support, cognitive behavioral therapy), the duration of the follow- up period and the method that the intervention was delivered (e.g telephone conducts, home visits). Another striking feature was the variety of outcomes that were studied. The most common outcomes were: anxiety and depressive symptoms, burden and impaired quality of life. Conclusions Supportive care management programs are beneficial for both, the patients and the caregivers. It provides the supporting environment for the best possible results and outcomes and most importantly quality of life of the patients and the caregivers.

Caregiver Experiences With an Internet-Delivered Insomnia Intervention: SHUTi-CARE Trial Primary Qualitative Analysis.

Digital health interventions show potential to increase caregivers' access to psychosocial care; however, it is unclear to what extent existing interventions may need to be tailored to meet caregivers' unique needs. This study aimed to determine whether-and if so, how-an efficacious Internet-delivered insomnia program should be modified for caregivers. The generalizability of these findings beyond the tested program was also examined. Higher-intensity family caregivers (N = 100; age M = 52.82 [SD = 13.10], 75% non-Hispanic White, 66% ≥college degree) received access to an Internet-based cognitive-behavioral therapy for insomnia (CBT-I) program. Participants who completed one or more intervention "Cores" provided open-ended feedback on their experience; nonusers (completed no Cores) shared their barriers. Most caregivers who used the program (n = 82, 82%) found it feasible, citing its user-friendly, fully automated online format. Many reported that CBT-I strategies were helpful, although some faced challenges in implementing these strategies due to the unpredictability of their caregiving responsibilities. Opinions were divided on the utility of tailoring the program for caregivers. Nonusers (n = 18, 18%) primarily cited concerns about time burden and lifestyle compatibility as usage barriers. Delivering fully automated behavioral interventions through the Internet appears suitable for many caregivers. Extensive tailoring may not be required for most caregivers to benefit from an existing online CBT-I program, although additional guidance on integrating CBT-I strategies in the context of challenging sleep schedules and environments may help a subset of caregivers. Future research should explore how such tailoring may enhance digital health intervention uptake and effectiveness for caregivers.

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.

Pepea Pamoja:† Applying the Ecological Validity Framework to co-develop a wellbeing and behavioural training program for caregivers of young children with autism in low-resource settings of Kenya and the United States.

Autism is a complex neurodevelopmental disability with global prevalence of one in 100 individuals. Poor access to interventions in both under-resourced regions of high-income countries and low- and middle-income countries has deleterious effects on the health and wellbeing of individuals with autism and their families. Our objective was to utilize a reciprocal innovation framework and participatory methods to adapt and co-develop a culturally grounded group-based wellbeing and naturalistic developmental behavioural intervention (NDBI) training program for caregivers of young children with autism to be implemented in Kenya and rural Indiana. This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH) program. An evidence-informed Naturalistic Developmental Behavioral Intervention (NDBI) previously utilized in Indiana was adapted and iteratively refined using the Ecological Validity Framework (EVF) by a team of US and Kenyan disability experts. Key adaptations to the program were made across the EVF domains of language, persons, metaphors/content, concepts, goals, methods, and context. Substantial cultural adaptations were made to the NDBI following the EVF model, including the addition of traditional Kenyan cultural practices, use of narrative principles, and focus on daily routines over play. Pepea, the adapted program, involves 10 group sessions covering content in basic education on autism, positive caregiver coping strategies, and behavioural skills training to promote child communication and reduce challenging behaviour. Key adaptations for Pepea were integrated back into a US NDBI caregiver training program. This study fills a critical gap by detailing the adaptation process of a caregiver wellbeing and naturalistic developmental behavioural training program for caregivers of children with autism in low-resource settings. Our next steps are to report on mixed-methods outcomes from pilot implementation. Our long-term goal is to apply these insights to advance sustainable and scalable autism intervention services across the globe.

Eficacia de un programa de salud bucal para cuidadores de personas con discapacidad

Objective: Determine the level of knowledge of caregivers of people with disabilities about oral health before and after applying a program of educational workshops on the subject. Methods: It was a quasi-experimental study of direct intervention, longitudinal, with control before and after, with non-probabilistic sampling. An educational oral health program for caregivers of people with disabilities was developed, applied, and evaluated through a survey before and after its implementation, in 111 caregivers, as well as the evaluation of the Oral Hygiene Index of their relatives with disabilities, in the period from October to December 2020. Results: Before the intervention, 9.9% of people with disabilities attended the dentist every six months, which increased to 76.5%. Before the program, 102 people only used toothbrushes and toothpaste for oral cleaning, after 109 continued using the same products, however, the use of dental floss increased by 7 people. The Oral Hygiene Index remained regular, although it decreased from 2.30 to 1.68. Conclusion: The application of the oral health program had a favorable impact on caregivers, improving the knowledge regarding oral hygiene of their relatives with disabilities, improving the Oral Hygiene Index.

Project LISTEN: Foundations and Development of a Peer Empowerment Program for Caregivers of Children with Variations of Sex Characteristics

AbstractNearly 2% of the population is born with intersex traits or variations of sex characteristics (VSC). Marginalization of people with VSC whose experience of social isolation and stigma can lead to mental health challenges and low degrees of medical and self-empowerment. Infants and children with VSC rely on caregivers to make decisions which impact their medical and social-emotional wellbeing. Interview recordings were analyzed using Interpretive Phenomenological Analysis (IPA) and generated four preliminary themes that will be used to develop a logic model to inform the development of a novel peer-empowerment intervention: (1) the isolating and overwhelming experience of learning about child’s VSC; (2) caregivers desire early access to education and information; (3) connecting with peer support provides reassurance and lessens stigma; (4) developing skills of communication and advocacy help empower parents. Features of post-traumatic growth were endorsed by caregivers. In partnership with an advisory group of stakeholders, findings from this study will be used to develop a logic model of the psychological, social, and environmental determinants that our intervention will target to improve health and quality of life outcomes for new parents of children with VSC. Project LISTEN (Let Intersex Stories Teach, Enlighten, and Nurture) applies the concepts of epistemic justice and health liberation to support, educate, and empower caregivers of children with VSC. Clinical social workers are ideal champions for peer empowerment programs that work to develop critical consciousness in those who have been socially marginalized.

Adaptation of SafeCare, an evidence-based parenting program, for caregivers of infants in the neonatal intensive care unit

BackgroundWhile there are several parenting programs for NICU caregivers, no studies, to our knowledge, have developed parenting programs aimed at preventing child maltreatment that specifically address these parental factors: parental stress, parental self-efficacy, and positive parent-infant interaction. ObjectivesThe objectives of this study were to: 1) Identify adaptations and/or augmentations needed to optimize SafeCare® for NICU caregivers, and 2) Examine the acceptability and preliminary effects of the adapted SafeCare NICU (SCNC) program with NICU caregivers. MethodsThis study consisted of two phases: formative (phase one) and pilot (phase two). For phase one, 5 NICU former caregivers and 5 NICU staff were interviewed to make relevant, NICU-specific adaptations for SCNC. Phase two consisted of a pilot study, where 13 current NICU caregivers were enrolled in the adapted SCNC program. Outcomes included acceptability and preliminary effects of parental stress, parental self-efficacy, and parent-infant interaction. ResultsAdaptations to SafeCare consisted of adding a pre-session to discuss individualized experiences, incorporation of adjusted developmental milestones, a NICU-specific resource sheet, and individualized adaptations to activities based on relevant medical concerns. Out of the 13 participants, 8 completed SCNC (61.5 % retention rate). Participants indicated significant reductions in stress after SCNC (Parental stress index score = 61.7) compared to baseline (79.2, p = 0.02). Among participants who completed SCNC (n = 8), all stated they supported this program for implementation among NICU caregivers. DiscussionThe adapted SCNC demonstrated acceptability among NICU caregivers.

Informal caregiver and healthcare professional perspectives on dementia and nutrition.

Persons living with dementia and informal caregivers are at a higher risk for malnutrition. Most caregivers are not experts at identifying nutritional complications of dementia. Therefore, we aimed to identify nutrition knowledge and challenges related to feeding and caring for persons with dementia to develop a meaningful intervention. A mixed-methods approach was used. Eight focus groups were conducted with caregivers of persons living with dementia (n = 28) and healthcare professionals (n = 23). Data was analysed using NVivo software. A questionnaire was administered to identify nutritional challenges. A modified food frequency questionnaire assessed food patterns of caregivers and persons with dementia. Results were compared to Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) dietary guidelines. Data were analysed using SPSS software. Four major themes emerged: forgetting to eat, developing food aversions, strong preferences for sweets and weight changes. Findings revealed common strategies used to improve nutrition intake included cueing, supplements and quiet eating environment. Caregivers were impacted by stress leading to poorer food choices and exhaustion. Recommendations for a caregiver program made by participants included education, resources and support. Findings from the food frequencies questionnaire survey showed most participants had a lower dietary diversity compared to the MIND diet guidelines. With both groups being more prone to malnutrition, this research shows that participants were less likely to obtain adequate nutrition for brain health. Additionally, caregivers are dealing with nutrition issues themselves and their person living with dementia. The findings support the need for registered dietitians to provide tailored nutrition interventions for these families.

NURS-04. MUSIC THERAPY WITH CAREGIVERS FOR THOSE WITH PEDIATRIC BRAIN CANCER AND BRAIN TUMORS: A CRITICAL REVIEW OF THE LITERATURE AND RECOMMENDATIONS FOR FUTURE PROGRAMS

Abstract BACKGROUND Caregivers for those with pediatric brain cancer and brain tumors face significant challenges. During the course of treatment, pediatric brain cancer and brain tumor patients face not just the physical consequences of treatments, but the neurological effects as well. METHODS This critical review of the literature examines the effects of Music Therapy on Caregivers, Caregivers for cancer patients, and Caregivers for pediatric cancer patients. A literature review was specifically chosen with the intention of making recommendations for future program planning. Subjects explored include the psychological, physical, and financial impacts of caregiving. Additional concepts include personality traits of Caregivers and multicultural considerations in caregiving. The topics of brain cancer and the use of Music Therapy with patients are also explored. Special attention is given to Music Therapy for Caregivers for those with pediatric brain cancer and brain tumors. Main points under this headline also include Caregiver stressors, similarities and differences in multicultural caregiving, and the limited research available to Caregivers. RESULTS At the time the literature review, no research had been conducted in the area of Music Therapy and Caregivers for pediatric brain cancer and primary brain tumors. Music Therapy was proven, however, to be a significant non-pharmaceutical intervention for several areas, including anxiety and pain management. CONCLUSION The conclusion drawn was that more research is needed with Music Therapy and this particular population. Additionally, a basic framework for a Music Therapy program for Caregivers for those with pediatric brain cancer and brain tumors has been provided with recommendations on the expansion of the program.

NURS-05. CATALYZING AND INFORMING THE DEVELOPMENT OF MORE COMPREHENSIVE AND ACCESSIBLE PROGRAMS FOR CAREGIVERS OF YOUNG ADULT SURVIVORS OF CHILDHOOD BRAIN TUMORS

Abstract BACKGROUND The chronic and intensive care needs of young adult survivors of childhood brain tumors are most often addressed by their maternal caregivers with limited, specific psychosocial or other programs to reduce caregiving demands and enhance their family management. Using a social ecological perspective, the purpose of this study was to catalyze and inform the development of more comprehensive and accessible programs for caregivers of young adult survivors of childhood brain tumors. METHODS Semi-structured interviews were conducted with 21 maternal caregivers, 6 post baccalaureate students/professional coaches for a problem-solving intervention for maternal caregivers, and 16 neuro-oncology clinical experts using interview guides tailored to their roles and constructed based on the Consolidated Framework for Implementation Science. Qualitative. Interview data were analyzed using content analysis. RESULTS Barriers included: need for internet connected devices (microsystem level); lack of care matched to their identified needs (mesosystem); poor tracking of long-term survivors and lack of survivorship psychosocial services (macrosystem); and lack of supportive health care policies and funding mechanisms for individuals and organizations (exosystem). Facilitators included: web-based platform accessible to the individuals and population (microsystem); widespread acknowledgement regarding gaps in survivorship psychosocial care (mesosystem); partnerships with survivors of childhood brain tumors, caregivers, and organizations that treat them (macrosystem); and dissemination among childhood brain tumor treatment/survivorship programs, healthcare systems, and community organization and endorsement from them (exosystem). CONCLUSIONS Multilevel approaches that address barriers and facilitators for improving health equity for maternal caregivers of young adult survivors of childhood brain tumors incorporate the design and dissemination of accessible, web-based programs designed in partnership with survivors, caregivers, and organizations to build care matched to need, as well as organizational, political, and community advocacy.