Caregivers Research Articles

The longitudinal association between sport participation and self-esteem in youth in the Netherlands: The role of sport type

ObjectivesTo investigate the longitudinal associations of sport participation with self-esteem in youth, and whether this relationship differs between team compared to individual, and non-esthetic compared to esthetic sports. DesignProspective data on sport participation at age 10 and self-esteem at age 13 years was used, collected from 2970 participants within Generation R, a population-based cohort study in the Netherlands. MethodsHours of sports per week were measured with a questionnaire, completed by the primary caregivers. Participation in sports was classified into team vs. individual and non-esthetic vs. esthetic sports. Self-esteem was assessed by the Harter's Self-Perception Profile. Linear regression analyses, adjusted for multiple testing were conducted to test the association between sports and self-esteem subdomains. Then, differences in self-esteem among youth participating in different types of sports were explored by two separate sets of linear regression with team and non-esthetic sports as the reference groups. ResultsMore hours of sports were associated with higher self-esteem (β = 0.081, pfdr < 0.001). This association was driven by the subdomains social acceptance (β = 0.057, pfdr = 0.004) and athletic competence (β = 0.242, pfdr < 0.001). Participation in individual or esthetic sports was associated with lower self-esteem compared to the team (β = −0.196, pfdr < 0.001) or non-esthetic (β = −0.172, pfdr = 0.002) sports. ConclusionsSport participation, particularly team and non-esthetic sports, may be beneficial for self-esteem among youth, driven by aspects like socializing and one's ability to do well at sports. The aspects of different types of sports could be considered for developing improved sport-related environments and effective physical activity interventions.

Explaining the Family-Centred Care of Young People With Depressive Disorders and Suicidal Ideations: A Grounded Theory Study.

This study aimed to develop a theory to guide family members caring for young people with depressive disorders and suicidal ideations. Strauss and Corbin's Grounded Theory. Theoretical sampling was used to recruit primary family caregivers (aged 22-60) of young people experiencing depressive disorders and suicidal ideations from hospitals and psychiatric clinics in Taiwan. Data were collected using interviews (n = 23) in 2023. Data were analysed using Corbin & Strauss' analytical framework, including open, axial and selective coding until theoretical saturation was reached. A paradigm model was used to link the 13 categories and develop a substantive theory to help guide family members in the care of their young persons with depressive disorders and suicidal ideations. The core category that emerged was 'Struggling to contain the young person's life by adjusting, assisting, and protecting them from diving into depression'. Other key categories interconnected with this core category were-creating a nurturing environment, adjusting to changes, protecting the young person's safety and assisting with their medical treatment. Family caregivers could use this theory as a guide to enhance the care of young persons experiencing depressive disorders and suicidal ideations and accompany them alongside the healing process. Nursing professionals could provide psychoeducation to family caregivers on how to hold the young person gently and acquire compassion for the young persons' lived experience, thoughts and emotions, by creating a nurturing environment, adjusting to changes, protecting their safety and assisting with their medical treatment. This theory provides valuable guidance for future intervention research aimed at improving family caregivers' ability to care for young persons with depressive disorders and suicidal ideations. The COREQ guidelines were utilised. No patient or public contribution.

Modelling the associations between parental depressive symptoms, hypomanic traits, and infant socio-emotional development: The mediating role of parental reflective functioning

BackgroundAlthough understanding of maternal hypomania in the postpartum period is gradually improving, the intergenerational pathways of risk associated with hypomania in the context of postpartum depression remain unknown. It is also unclear whether distinct or shared pathways of risk exist for infants exposed to different parental mood characteristics and whether these pathways are mediated by parental reflective functioning. MethodsAn online survey was administered to 1788 parents (89 % mothers, 50 % White) who were primary caregivers of a child under 2. Structural equation modelling techniques were employed to model direct and indirect associations between parental depressive symptoms, hypomanic traits and infant socio-emotional development, investigating the mediating role of parental reflective functioning. ResultsElevated levels of parental depressive symptoms, in the presence of hypomanic personality traits, were directly associated with infant socio-emotional challenges, without affecting parental reflective functioning. However, higher levels of parental hypomanic traits in the postnatal period displayed a fully mediated pathway of risk transmission to infants' socio-emotional development via their negative association with parental reflective functioning. LimitationsResults should be interpreted with caution as the reliance on self-and-parent-reported scales may have introduced biases influenced by individual perceptions and situational factors. Additionally, the cross-sectional design of this study inhibits establishing cause-and-effect relationships. ConclusionsOverall, these results highlight the critical role of both parental depressive symptoms and hypomanic traits on infant socio-emotional development, suggesting that supporting parental mood regulation and mentalizing abilities in the postnatal period could reduce the risk of early maladaptive socio-emotional trajectories in children.

A qualitative study to explore the experiences faced by primary caregivers of children with mental illness during the COVID-19 pandemic at the child and adolescent psychiatry OPD

Aim: To explore the lived-in experiences of primary caregivers of children with mental illness while taking care during the coronavirus disease 2019 (COVID-19) pandemic. Methodology: This study is a descriptive phenomenological study. Convenience sampling was used. Data were collected by in-depth interviews of 30 primary caregivers of children with mental illness, during the COVID-19 pandemic. All interviews were audio-recorded and analyzed using a thematic approach. Results: The overall aura of fear and panic brought by the pandemic found its way into the psyche of patients and the development of their illnesses during the pandemic. The entirety of the work brought out three themes and 11 subthemes as categorized for the aim of this study. Conclusion: Primary caregivers of children with mental illness during the COVID-19 pandemic reveal that lifestyle changes, such as online education, confinement, overuse of electronic gadgets, and increased laziness and lethargy in children after prolonged lockdown, were drastic changes which caregivers had to deal with.

Addressing India’s alcohol misuse crisis: The urgent need for screening and brief intervention to bridge the healthcare gap

India faces a significant challenge with alcohol misuse, as evidenced by the national survey revealing that 57 million out of 160 million persons with alcohol use exhibit harmful or dependent patterns, necessitating professional assistance. The Global Status Report on Alcohol and Health (2018) indicates a rising per capita alcohol consumption in the Southeast Asian Region, with India contributing substantially. To address this, implementing policies and programs to curb hazardous alcohol use is crucial. Despite a shortage of mental health professionals in India, they remain the primary caregivers for those with alcohol-related issues. Only one in five individuals with problematic alcohol use can access professional help. I argue for adopting Screening and Brief Intervention (SBI) to bridge this healthcare gap. SBI is a concise, structured counseling approach that proves effective and scalable. It can be delivered by various healthcare providers, including doctors, nurses, counselors, and paramedics. Hence, it can be seamlessly integrated into primary care, emergency, and nonclinical settings. The efficacy of SBI extends to electronic formats, providing a scope of expansion through telehealth. The WHO advocates SBI by its SAFER initiative aimed at reducing negative alcohol-associated health and social consequences. SBI is effective across age groups, including adolescents and young adults, constituting most of India’s population. Emerging evidence suggests that SBI is acceptable, feasible, and effective in the Indian context. Universal or targeted SBI can be a pivotal tool in achieving the Sustainable Development Goals (2030) and global commitments for noncommunicable diseases, fortifying efforts to prevent and treat alcohol misuse.

Investigating Attention Deficit Hyperactivity Disorder Symptoms, Emotional Dysregulation and Family Functioning in Children: A Community-Based Study in Elementary Schools in Surabaya, Indonesia.

Research on emotional dysregulation related to attention deficit hyperactivity disorder (ADHD) symptoms and its effects on family functioning in children is scarce. This is the first study conducted in Indonesia to examine the intricate relationships between ADHD symptoms, emotional regulation, and family functioning in children. A cross-sectional survey was conducted involving primary caregivers of children aged 9-13 years old across three elementary schools in Surabaya, using validated questionnaires comprising the Indonesian ADHD Rating Scale, Emotion Regulation Checklist, and Family APGAR scale. The findings revealed a positive association between ADHD features and the emotional lability/negativity subscale (ERLN) (r=0.528; p<0.001), but not the emotion regulation subscale (EREG). Moreover, family functioning positively correlated with ERLN (r= -0.269; p=0.003) and negatively correlated with EREG (r=0.331; p<0.001). Parental education emerged as a significant demographic factor, with higher education levels linked to better emotion regulation (r=0.297; p=0.001). These findings underscore the importance of addressing ADHD symptoms and emotional dysregulation in children in order to enhance family functioning and overall well-being. Implications for future research and interventions targeting emotion regulation, especially in children with ADHD and their families, are also discussed.

Healthcare Needs of Incarcerated Pregnant and Postpartum Women: Implications for Just Nursing Practice

Women remain the primary caregivers for children, making the imprisonment of women and mothers potentially more complicated for families. Women in the prison system often have significant health problems and lack access to care even before incarceration. While women constitute a minority in the prison system, they have gender-specific needs, often related to pregnancy, birth, and the postpartum period. Often, prisons are not equipped to provide appropriate care, and many state policies vary concerning the healthcare needs of incarcerated pregnant and postpartum women. This article offers an overview of current issues in reproductive healthcare for this vulnerable population by providing a brief background on the topic and exploring how nurses can become their advocates. A review of selected literature describes current relevant research, followed by viewpoints from various healthcare organizations. Recommendations include prison programs and services targeted to pregnant and postpartum women, such as birth doulas and prison nurseries, which are known to benefit this population. Nurses can advocate for this unique population by using a trauma-informed framework of care and participating in legislative efforts to support pregnant and postpartum women who are incarcerated.

The weight of care: exploring the challenges faced by primary caregivers of children with traumatic brain injuries.

Traumatic brain injury (TBI) is a leading cause of death and disability in children, yet the full impact on their primary caregivers remains largely uncharted. This study seeks to delineate the current scope of the caregiving burden and to identify the key determinants that shape it, aiming to enhance clinical interventions and caregiving approaches. We conducted a comprehensive survey of primary caregivers of pediatric TBI patients admitted to a top-tier children's hospital in China, spanning the period from January 15 to November 15, 2023. The Zarit Burden Interview (ZBI) served as the primary tool for gauging the level of caregiver burden, while the Simplified Coping Style Questionnaire (SCSQ) provided insights into their coping strategies. Our survey encompassed 284 primary caregivers of TBI children. The average ZBI score for this cohort was 40.57±10.41, indicating a considerable burden. Correlational analysis uncovered robust links between the burden of caregivers and several pivotal factors: the severity of TBI (r=0.496), intensive care unit (ICU) stay (r=0.525), monthly household income (r=0.604), and reliance on negative coping mechanisms (r=0.493), all of which were statistically significant (P<0.05). Further, a multiple linear regression analysis affirmed that the severity of TBI, ICU admissions, monthly income, and negative coping styles were independent predictors of caregiver burden (P<0.05). The findings underscore the substantial burden shouldered by primary caregivers of TBI children. It is imperative to direct targeted support towards caregivers from economically disadvantaged backgrounds and those who tend to adopt negative coping strategies, to alleviate their burden.

“Pathfinder Filled The Gap And Linked In With The Necessary Services” Service User Perceptions Of The Pathfinder Service

Abstract Background Pathfinder is a service designed to keep older adults who phone 999 at home by utilising alternative care pathways, when it is safe to do so. Pathfinder responds to adults aged 65 and older who present with low acuity complaints. The service is delivered by Occupational Therapists, Physiotherapists and Advanced Paramedics and is embedded between acute and community care. The aim of this study is to capture how the service user found their interaction with this novel service. Methods As part of routine service evaluation, semi-structured brief telephone interviews with closed and open-ended questions were completed with a number of service users (the patient or their primary care giver). Interviews were completed at least one week after their discharge from the service, by a member of the team who had not been involved in their care. Interviews were then analysed using Microsoft Excel® for closed ended questions and thematic analysis for open ended questions. Results One hundred service users were contacted, of which 76 completed the brief telephone interviews. 99% of respondents felt Pathfinder treated them with respect and dignity, 100% felt Pathfinder communicated clearly and 97% rated the service as excellent. Five key themes were identified from open-ended questions (1) the prompt arrival of care, (2) the thorough examination and reassurance provided, (3) the benefit of follow-up after the initial 999 call, (4) the domino effect of onward referrals and (5) the holistic approach to care given. Conclusion There was universal positive feedback for the Pathfinder service reported by both older adults who engaged with the service and their primary care givers. Key elements of the service delivery were complimented including the assessment, the follow up service provided and the onward referral to acute and community services.

Experiences And Preferences Of People With Stroke And Caregivers, Around Supports Provided At The Transition from Hospital to Home

Abstract Background Transitioning home from organised stroke services poses many challenges for people with stroke (PWS) and their caregivers (CGs), requiring them to navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. Methods Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and their CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. Results Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. Conclusion Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. There is a need for more personalised and timely information-sharing to support individuals and caregivers effectively. A multi-faceted approach is recommended to alleviate anxiety, reduce delays, and provide equitable care for all involved.

Co-parenting, parental competence and problem behaviours in children: examining differential parental roles

In recent years, the increase in child problem behaviours has become a significant public health concern. It is crucial to understand the complex dynamics between parental co-parenting, parenting competence, and child problem behaviours to develop effective interventions. This study explored the intricate relationship between parental co-parenting, parenting sense of competence, and child problem behaviours in a sample of 407 parent-child pairs from Shanghai, China. Findings indicated that neither maternal nor paternal perceived co-parenting significantly predicts child problem behaviours directly. However, maternal parenting sense of competence emerges as a significant mediator between maternal perceived co-parenting (both supportive and non-supportive) and child problem behaviours. This highlights the pivotal role of mothers as primary caregivers in shaping parenting dynamics and child outcomes. Conversely, paternal parenting sense of competence does not mediate the relationship between paternal perceived co-parenting and child behaviours, suggesting a nuanced dynamic within paternal care-giving roles. The study underscores theoretical contributions, validating the theory of inconsistent compensation effect and emphasizing the primary caregiver effect within the Chinese family context.

User involvement in the design and development of medical devices in epilepsy: A systematic review.

This systematic review aims to describe the involvement of persons with epilepsy (PWE), healthcare professionals (HP) and caregivers (CG) in the design and development of medical devices is epilepsy. A systematic review was conducted, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Eligibility criteria included peer-reviewed research focusing on medical devices for epilepsy management, involving users (PWE, CG, and HP) during the MDD process. Searches were performed on PubMed, Web of Science, and Scopus, and a total of 55 relevant articles were identified and reviewed. From 1999 to 2023, there was a gradual increase in the number of publications related to user involvement in epilepsy medical device development (MDD), highlighting the growing interest in this field. The medical devices involved in these studies encompassed a range of seizure detection tools, healthcare information systems, vagus nerve stimulation (VNS) and electroencephalogram (EEG) technologies reflecting the emphasis on seizure detection, prediction, and prevention. PWE and CG were the primary users involved, underscoring the importance of their perspectives. Surveys, usability testing, interviews, and focus groups were the methods used for capturing user perspectives. User involvement occurs in four out of the five stages of MDD, with production being the exception. User involvement in the MDD process for epilepsy management is an emerging area of interest holding a significant promise for improving device quality and patient outcomes. This review highlights the need for broader and more effective user involvement, as it currently lags in the development of commercially available medical devices for epilepsy management. Future research should explore the benefits and barriers of user involvement to enhance medical device technologies for epilepsy. This review covers studies that have involved users in the development process of medical devices for epilepsy. The studies reported here have focused on getting input from people with epilepsy, their caregivers, and healthcare providers. These devices include tools for detecting seizures, stimulating nerves, and tracking brain activity. Most user feedback was gathered through surveys, usability tests, interviews, and focus groups. Users were involved in nearly every stage of device development except production. The review highlights that involving users can improve device quality and patient outcomes, but more effective involvement is needed in commercial device development. Future research should focus on the benefits and challenges of user involvement.

Longitudinal associations between parental psychological control and adolescents' intergroup attitudes to prosocial behaviors towards ethnic outgroups.

While a substantial body of existing literature has examined the negative effects of parental psychological control on adolescents' prosocial behaviors, there is a noticeable gap in whether parental psychological control affects prosocial behaviors towards ethnic outgroup members. This three-wave longitudinal study investigated whether similar relations can be observed between parental psychological control and prosocial behaviors targeted at ethnic outgroup persons, and whether these relations are mediated by adolescents' intergroup attitudes. Participants were 412 European American adolescents (42% girls; Mage = 15.63 years at Time 1) and their primary caregivers (52% mothers) residing in the United States. They completed online questionnaires. Parents completed a measure of parental psychological control at Time 1. Adolescents completed measures of intergroup attitudes, public, and altruistic outgroup prosocial behavior at all three time points (T1, T2, T3), each approximately 8 months apart. The retention rate was 38.1% (N = 157; 44% girls) at Time 3. Path analyses revealed a direct negative link between parental psychological control and altruistic prosocial behavior towards ethnic outgroup persons but a direct positive association to public prosocial behavior towards outgroup persons. Importantly, parental psychological control was indirectly related to adolescents' prosocial behavior towards ethnic outgroup persons, via its effect on their intergroup attitudes. The findings underscore how parental psychological control and adolescents' intergroup attitudes contribute to shaping prosocial behaviors towards ethnic outgroups.

Examining Care Network Characteristics in Older Adults' Relocation to Residential Care Settings.

When older adults face increasing care needs or limited support, remaining safely and comfortably at home becomes challenging. Extant research has primarily concentrated on characteristics of the older adult or their primary caregiver on nursing home admission. This study examines the risk of older adults transitioning to residential care (e.g., assisted living, nursing home), focusing on the influence of their care network or involvement of multiple helpers. Using the National Health and Aging Trends Study, we conducted competing risk regression models that account for mortality, following 7,085 initially community-dwelling older adults across Rounds 1-9 (2011-2019). We assessed network composition, size, shared tasks, and the number of in-network specialists or generalists while controlling for individual sociodemographic and health factors. Individuals with care networks that shared medical tasks had the highest risk of moving to a residential care setting, followed by those sharing household tasks. Conversely, shared mobility or self-care and transportation responsibilities were associated with lower risks. Having more generalists, but not specialists, increased the risk. Larger networks were associated with heightened risk, although having close family members like a spouse was protective. The findings underscore that care network characteristics are critical to older adults' ability to age in place. Specifically, older adults with larger networks, lacking a spouse or child, and providing complex care are at greater risk for relocating. Understanding care networks can guide interventions related to care network coordination and resource allocation to help avoid or postpone a residential care move.

Preparedness for Caregiving Role and Telehealth Use to Provide Informal Palliative Home Care in Portugal: A Qualitative Study.

Background/Objectives: Given the increasing occurrence of long-term illnesses, it is imperative to focus on adequately preparing and assisting those who assume the responsibility of caregiving. Our study aims to explore whether caregivers feel prepared to provide informal palliative home care, their experiences, and the usefulness of telehealth in managing daily activities. Methods: Using a descriptive qualitative research design and a purposeful sampling technique, thirteen primary family caregivers who provide informal palliative home care were recruited. Data collection was conducted through face-to-face individual interviews conducted from May 2023 to July 2023. Data were analyzed using Braun and Clarke's reflexive thematic analysis. Results: Caregivers were mainly female (n = 8) with a mean age of 59.5 years (SD = 9.42). Based on our findings, three overarching themes emerged: (1) becoming a caregiver, (2) support-from-home palliative care team, and (3) telehealth in palliative home care. The reasons that influence the preparedness of family caregivers include their own desires, health conditions, their range of responsibilities, and the consequences that arise from the situation's complexity. Telehealth helps fulfill the patient's wishes to be at home in EoL and provides caregivers with access to professional guidance and support. Conclusions: Specialized home-based palliative care teams must be aware of caregivers' self-assurance, knowledge, skills, and aptitudes in carrying out daily responsibilities and in managing emotions to improve preparedness for caregiving, loss, and its aftermath. The provision of professional PC services in the home along with a robust support system for informal caregivers is invaluable.

Diet quality and blood lead levels in Uruguayan first graders

ObjectiveFoods are a potential source of lead but also contain nutrients that counteract the intestinal absorption of lead. Translatable evidence is needed to better understand the relationship between whole diets and blood lead levels (BLLs) in children. In this cross-sectional study we investigated the association between dietary variety, adequacy, moderation, and overall diet quality with children's BLLs. MethodsFirst graders (~ 7 years) from Montevideo, Uruguay were evaluated in years 2009–13 (Phase I, n = 303) and 2015–19 (Phase II, n = 443). Lead was measured in fasting blood via atomic absorption spectrometry and primary caregivers completed two non-consecutive 24-h recalls. Indices of dietary variety (maximum score of 20), adequacy (maximum 40), moderation (maximum 30), and overall diet quality were calculated from food and nutrient intakes averaged over two recall days. The indices were adapted from the Diet Quality Index-International based on dietary recommendations for children. Missing covariate data were imputed. The associations between diet quality measures and BLLs were modeled separately in Phase I and II with multivariable linear models, testing for sex differences via interaction terms and stratified models. ResultsThe median[IQR] BLLs were 3.8[2.6, 4.9] and 1.3[0.7, 3.6] μg/dL in study Phases I and II, respectively. All diet quality scores were <60 % of the maximum values and daily intakes of key food groups fell below recommended levels. There was little evidence of an association between measures of diet quality and children's BLLs overall. On the other hand, higher diet variety, adequacy, and overall diet quality were associated with slightly higher BLLs among girls in Phase I only. ConclusionsIn the context of low lead exposure and food consumption patterns that fall short of recommended levels, the relation of diet quality to children's BLLs may depend on lead exposure levels.

Exploring links between attachment and mental health

Attachment theory provides numerous implications for mental health and individual functioning throughout the lifespan. Attachment styles, formed based on early interactions with a caregiver, play a crucial role in emotional regulation, relational satisfaction, and psychological well-being. Childhood experiences become the foundation for the development of internal models of self, the world, and others, influencing attachment patterns in adulthood. These patterns are significant for later relationships, especially romantic ones, mental health, and the development of psychopathology. If the primary caregiver responds consistently, supports, and comforts the child, the child will be inclined to cooperate, seek closeness, and feel loved and safe. Such a child will develop a secure attachment, viewing the caregiver as a secure base and a refuge from the unpredictable world. Individuals who formed a secure attachment style in childhood tend to create stable and mature relationships, exhibit greater psychological resilience, and are less likely to struggle with mental health issues. Conversely, if the caregiver is unresponsive or lacks sensitivity, the child may develop an insecure attachment style, characterized by heightened anxiety or avoidance. Attachment-related anxiety is associated with a persistent state of heightened vigilance, as individuals remain on alert, anticipating potential separation from their parents. Avoidant attachment is marked by a tendency to maintain emotional distance, reluctance to rely on others, and a lack of seeking comfort and support from caregivers. An insecure attachment style negatively impacts romantic relationships. Moreover, individuals characterized by attachment anxiety or avoidance are more prone to mental health disorders. Attachment theory provides a crucial framework for understanding the complex links between early relational experiences and mental health. Poor relationship quality, complex PTSD, depression, personality disorders—particularly antisocial and borderline—have their roots in early maladaptive relationships between the child and caregiver and may be related to interpersonal trauma. Secure attachment acts as a protective factor against psychopathologies, promoting emotional stability and healthy social functioning.

Quality of life and associated factors among primary caregivers of children and adolescents with neurodevelopmental disorders attending public hospitals in Addis Ababa, Ethiopia: a cross-sectional study.

Neurodevelopmental disorders are a set of disorders that negatively affect the acquisition of skills in a variety of developmental domains, including motor function, learning, socialization, language and cognition. However, there is no information available on the standard of living of Ethiopian primary caregivers of children and adolescents with neurodevelopmental disorders. Therefore, this study aimed to assess the quality of life (QOL) and associated factors among primary caregivers of children and adolescents with neurodevelopmental disorders in Addis Ababa, Ethiopia. A cross-sectional study was conducted during 1-30 May 2022. Systematic random sampling was used to obtain 352 samples. QOL was measured using the WHO Quality of Life Brief. The gathered information was coded, entered into EpiData 4.6.0.2 and analyzed with SPSS version 26. Multiple linear regression analysis was used to identify the correlates of QOL and the strength of the correlation was measured by β coefficient with 95% CI. The mean score of the overall QOL was 62.61 with a SD of 5.17. The mean (±SD) scores for the physical health, psychological, environmental and social relationship domains of primary caregivers were 57.36±9.98, 66.98±9.39, 66.06±12.91 and 60.02±9.14, respectively. Age was significantly associated with physical domain (β=-0.25, 95% CI -0.43 to -0.07) and with environmental domain (β=-4.57, 95% CI -9.06 to -0.09). Being divorced/widowed was negatively associated with psychological health (β=-2.99, 95% CI -5.82 to -0.17) and social health (β=-0.62, 95% CI -1.33 to -0.10). The presence of medical illness was negatively associated with the physical health domain (β=-4.32, 95% CI -7.64 to -2.91) and the environmental domain (β=-3.11, 95% CI -5.71 to -0.51). Poor social support was negatively associated with psychological health (β=-3.25, 95% CI -5.89 to -0.61) and the social health domain (β=-3.39, 95% CI -11.3 to 4.6), and moderate social support (β=8.62, 95% CI 3.15 to 14.09) was positively associated with physical health. Depression (β=-6.32, 95% CI -11.96 to -0.67) and anxiety (β =-3.07, 95% CI -5.80 to -0.34) were negatively associated with physical health and the psychological health domain, respectively. The findings from this study indicate that all dimensions of QOL of primary caregivers of children and adolescents with neurodevelopmental disorders in this study setting were compromised. Being divorced or widowed, lack of formal education, age, average monthly income, poor social support, depression, anxiety and the presence of medical illness were factors associated with QOL in all domains. This requires integrating a bio-psychosocial perspective, a positive mental health strategy and pharmaceutical therapies to enhance QOL for caregivers of children and adolescents with neurodevelopmental disorders.

Predictors of Coping Strategies in Caregivers of Family Members with a Brain Tumor: A Correlational Study.

Brain tumor patients confront numerous challenges arising from diagnosis and treatment, and these impact the patient's physical, mental, and social functions at all levels. Primary informal caregivers assume a pivotal role in home-based patient care. Of particular importance are the coping strategies employed by family caregivers, as they can influence both their own health and the overall quality of home care. This study aimed to explore the associations among family function, caregiving competence, and coping strategies among primary informal caregivers. This study adopted a cross-sectional correlational design and convenience sampling to survey the primary informal caregivers of 111 brain tumor patients. The study instruments included the Family Assessment Device General Function, Caregiving Competence Scale, and Revised Ways of Coping Checklist. The findings of this study revealed a significant positive correlation between the family function of primary informal caregivers and their employment of emotion-focused coping (r = 0.209, p < 0.05). Furthermore, caregiving competence exhibited a positive association with problem-focused coping (r = 0.242, p < 0.05) and emerged as a significant predictor of problem-focused coping (β = 0.182, p < 0.05). However, neither family function (r = 0.059, p < 0.05) nor caregiving competence (r = 0.031, p < 0.05) demonstrated significant associations with total coping strategies. The findings of this study affirmed that enhancing the caregiving competence of primary informal caregivers of brain tumor patients can facilitate the adoption of problem-focused coping strategies.

Abstract B081: Caring for the Caregivers: Characteristics and challenges faced by caregivers of Latino Californians with rectal cancer

Abstract Background/Purpose: Caregivers often face physical, psychological, and financial burdens when caring for people with cancer. Caregivers of Hispanic/Latino (HL) patients with cancer are often informal caregivers, such as families and friends, reflecting the traditional cultural value of familismo. While many studies acknowledge the impact of cultural differences on caregiving and caregiver burden, our understanding of the specific barriers HL patients with rectal cancer and their caregivers encounter is limited. The aim of this study was to explore the unique challenges, experiences, and perspectives of individuals caring for HL patients with rectal cancer in ways that could inform future interventions. Methods/Study population: We conducted semi-structured interviews of Bay Area and San Joaquin Valley HL patients with past or current rectal cancer in English and/or Spanish based on participant preference. We partnered with Visión y Compromiso, a promotores and community health worker organization, and developed a community advisory board to help refine our interview guide and interpret our results. We encouraged patients to identify and include someone who helped care for them during their treatment, but intentionally did not define caregiver in any other way. Over six months, we interviewed a total of 17 patients and eight caregivers and used reflexive thematic analysis to identify themes from their shared experiences using interview transcripts in NVivo 14. Results: Sixteen of seventeen interviews identified family members including spouses, sons, brothers, and friends as primary caregivers. Identified themes include (1) roles informal caregivers undertake for transportation, daily activities, and healthcare management; (2) limitations in utilizing social workers as a resource due to a knowledge gap and language barriers; (3) personal financial burden from supporting patients and navigating through available resources, and (4) psychosocial impacts resulting from role overload as an advocate, a translator, and a caregiver. Conclusion: In supporting cancer patients, caregivers wear many hats. While many caregivers share similar burdens, informal caregivers experience added emotional stress from unexpectedly assuming new responsibilities. Specific to rectal cancer care, caregivers are often tasked with aiding in ostomy bag changes and navigating the multidisciplinary treatment teams. Furthermore, HL patients and their caregivers face unique challenges due to language barriers, such as the burden of translation and delivering news. Understanding the caregiver burden among HL patients with rectal cancer is crucial in enhancing cancer treatment and care, creating culturally relevant resources, and reducing cancer outcome disparities faced by HL communities. Citation Format: Min Young Kim, Julian P. Howland, Eleanor Brown, Lucas K. Carpenter, Patricia Castañeda, Maria Gonzalez, Miriam T. Hernandez, Zaria N. Cosby, Kristen M. Davis-Lopez, Ysabel Duron, Gladys M. Rodriguez, Sandra S. Zaky, Arden M. Morris, Aaron J. Dawes. Caring for the Caregivers: Characteristics and challenges faced by caregivers of Latino Californians with rectal cancer [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B081.