Caregiver Well-being Research Articles

The relationship between stress, social support, and quality of life among spouses of patients at the end-of-life stage in Thailand: A correlational study.

Non-communicable diseases have become a leading global health challenge, with mortality rates steadily rising. Insufficient patient care can worsen chronic illness, often placing significant caregiving responsibilities on the patient's spouse. In some cases, spouses may need to leave their jobs to provide full-time care, especially during the end-of-life stage. Spousal caregivers often face emotionally distressing circumstances while caring for their loved ones, which can lead to elevated stress levels. However, research indicates that adequate social support can improve caregivers' quality of life, reducing some of the burdens associated with end-of-life care. This study aimed to assess and analyze the relationships between stress, social support, and quality of life experienced by spousal caregivers in Thailand, guided by Lazarus and Folkman's (1984) Stress and Coping Theory. A correlational descriptive study design was used. The study was conducted with 84 spouses of patients in the end-of-life stage at a university hospital between October 2021 and March 2022. Data were collected using a questionnaire covering stress, social support, and quality of life and analyzed using Pearson's Product Moment and Spearman Rank Correlation Coefficients. The majority of spouses were women aged between 31 and 83 years (Mean = 61.24, SD = 10.42). The mean stress level was 6.40 (SD = 1.62), the mean social support was 55.07 (SD = 9.06), and the mean quality of life was 94.69 (SD = 10.04). There was no significant correlation between social support and stress (r = -0.098, p = 0.373). However, stress was negatively correlated with quality of life (r = -0.299, p = 0.006), and social support was positively related to quality of life (r = 0.219, p = 0.045). Spousal caregivers of patients at the end-of-life stage experienced varying levels of stress, social support, and quality of life. While no significant relationship was found between social support and stress, stress negatively impacted quality of life, while higher social support was associated with improved quality of life. Healthcare providers, especially nurses, should assess and address the stress, social support, and overall well-being of spousal caregivers to enhance their quality of life.

N02 Supporting psychosocial and emotional well-being and building resilience in family members of people with IBD: RCT feasibility and acceptability study

Abstract Background IBD significantly impacts the physical, psychosocial, and emotional well-being of individuals and their families, reducing overall quality of life [1, 2]. Prior studies indicate a preference for online interventions to enhance family members’ knowledge, resilience, and emotional well-being. In response, a web-based intervention with psychoeducational and interactive components was developed [3]. This study aimed to assess the intervention’s feasibility and acceptability, along with evaluation methods, to guide the design of a future effectiveness trial. Methods The study used a two-phase mixed-methods approach, following the Medical Research Council framework [4] for complex interventions: (a) a feasibility trial and (b) exit interviews. A two-arm feasibility RCT with 60 participants allocated in a 2:1 ratio (intervention vs. wait-list control) assessed the intervention and study design. Quantitative data were reported using descriptive statistics, while qualitative feedback on the intervention and study design was analysed using reflexive thematic analysis. Interviews were transcribed verbatim, anonymised, and managed in NVivo 14 software. Results Of 155 interested participants, 88 (56.8%) were screened, and 60 (38.7%) enrolled (40 intervention, 20 wait-list). Baseline mental well-being, caregiver burden, and self-efficacy scores showed no significant difference between groups (p>0.05). Retention rates at 16 weeks were 57.5% for intervention and 60% for wait-list. Engagement data showed 216 log-ins by 34/40 participants over 8 weeks (mean usage 135 minutes per participant), although adherence to the 1-hour weekly target was low. System Usability Scale results yielded a mean score of 79.15 of 100 (high satisfaction). Participants valued the intuitive design, cross-device compatibility, and ease of use, with particular appreciation for community spaces and psychoeducation, which they reported helped improve caregiving knowledge, self-care, and coping strategies. Suggested improvements included adding email alerts and real-time notifications to boost engagement. Conclusion The study process and web-based intervention demonstrated reasonable feasibility and acceptability, with high user satisfaction in usability, design, and content. Participants noted perceived improvements in caregiving knowledge and well-being, though usage adherence was low. Suggestions for engagement features including email reminders and in-app alerts, which offer insights for future intervention optimisation. These findings support refining the intervention and highlight the need for an effectiveness trial to assess its impact on family members of individuals with IBD.

Mapping the evidence of self-compassion in caregiver wellbeing for caregivers of persons with neurodegenerative disease: A scoping review.

Caregivers of those with neurodegenerative disease (ND) manage complex symptoms which impact their wellbeing. Self-compassion can promote maintenance of wellbeing during challenging experiences, including caregiving. Little guidance exists for observationally studying self-compassion or targeted interventions for this population. Our objective was to complete a scoping review of research describing self-compassion in the context of caregiver wellbeing of caregivers of those living with ND. Following Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Reviews (PRISMA-ScR) guidelines, 3 online databases identified 350 peer-reviewed articles, 18 of which were included in this study. Eligibility included being written in English, targeting caregivers of those living with ND, and examination of self-compassion. Articles were organized by the incorporation or characterization of self-compassion in the study design. Alzheimer's disease predominated study samples of care recipients. Across study types self-compassion appeared as a theoretical concept, emerging theme, variable associated with other outcomes, and main outcome variable. Self-compassion is frequently measured using the Self-Compassion Scale, full or short form . The study of self-compassion with caregivers of individuals living with ND is growing. Current literature is somewhat unfocussed, leading to gaps in understanding conceptualization to achieve maximum intervention benefits. Clarifying the role of self-compassion in caregiver wellbeing will provide a lens through which non-pharmacologic, psychotherapeutic, and behavioral intervention development may be framed to reduce negative psychological outcomes. The most frequently represented ND is Alzheimer's disease or other dementia, obscuring other NDs like amyotrophic lateral sclerosis, Parkinson's disease, and others.

The effect of caregiver mastery on the associations of depression, anxiety, caregiver burden, fear of disease progression with quality of life among children with solid tumors.

Caring for children with solid tumors (STs) can impact caregiver's physical and mental health. Caregiver mastery, which influences psychological well-being, is vital in improving outcomes for both caregivers and children. The study aimed to investigate the relationship between caregiver mastery, anxiety, depression, fear of disease progression (FoP), caregiver burden, and the quality of life (QOL) of children with ST. This cross-sectional study was conducted from June 2022 to April 2023 at a Grade A tertiary hospital in Shandong. Family caregivers of children with ST completed several validated measures, including the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Module, the Fear of Progression Questionnaire-parent version (FoP-Q-SF/PR), the Zarit Burden Interview Scale (ZBI), the hospital anxiety and depression scale (HADS), and the Caregiver Mastery Scale. Multiple linear regression analyses assessed the relationships between FoP, caregiver burden, anxiety, depression, caregiver mastery, and children's QOL. Results were expressed as β and 95% confidence intervals (CIs). A total of 454 caregivers participated. Caregiver mastery was positively correlated with children's QOL (β = 0.80, 95% CI: 0.20 to 1.39). Depression (β = -0.64, 95% CI: -0.83 to -0.45), anxiety (β = -0.67, 95% CI: -0.85 to -0.49), caregiver burden (β = -1.20, 95% CI: -1.60 to -0.80), and FoP (β = -0.04, 95% CI: -0.05 to -0.03) were negatively related to children's QOL. Caregiver mastery moderated the associations between depression, caregiver burden, FoP, and children's QOL, while also improving the effect of mild anxiety on QOL. The study underscores the importance of fostering caregiver mastery to mitigate the negative impact of caregiver distress on children's QOL and improve outcomes for both caregivers and children with solid tumors. Caregiver mastery moderates the effects of anxiety, depression, FoP, and caregiver burdenon children's QOL. Supporting caregiver mastery can alleviate caregiver burden and enhance both caregiver and child well-being.

How Dementia Stages Influence the Impact of Stressors and Caregiving Appraisals on Caregiver Well-being

How Dementia Stages Influence the Impact of Stressors and Caregiving Appraisals on Caregiver Well-being

Expressed emotions among caregivers of individuals with schizophrenia and associated factors: a multihospital-based survey in Southern Thailand

BackgroundSchizophrenia is a multifactorial disorder influenced by various biological and psychosocial factors. This study aimed to determine the characteristics and associated factors of expressed emotion (EE) among caregivers of individuals with schizophrenia.MethodsFrom May to July 2024, a cross-sectional study was conducted with caregivers of individuals with schizophrenia across multiple hospitals in Southern Thailand. The study utilized four questionnaires: (1) Demographic inquiry, (2) The Thai Expressed Emotion Scale (TEES), (3) The Thai General Health Questionnaire (GHQ-12), and (4) The Zarit Burden Interview (ZBI). Data were analyzed using descriptive statistics. The groups analyzed were compared using the Analysis of Variance (ANOVA) or Kruskal-Wallis test, the Student t-test or Wilcoxon rank sum test, and the Chi-square test. Multiple logistic regression analysis was performed.ResultsIn a survey of 200 caregivers, 70.5% were female. They had a median caregiving duration of 108 months, with an interquartile range (IQR) of 36 to 180 months. Notably, 51.0% of caregivers reported no mental health problems, as assessed by the GHQ-12, while 29.0% indicated experiencing severe burden. The median score on the TEES was 99.0, with an IQR of 84.7 to 109.0. Furthermore, 46.0% of caregivers reported TEES above the median score, indicating high levels of EE. There was also a significant correlation between caregiver burden and EE scores. Those experiencing severe burden had an EE score of 110.5 compared to 94.0 for those with no burden, which was statistically significant (p = 0.001). Multiple logistic regression analysis revealed that high EE among caregivers was associated with factors such as the patient’s duration of illness, caregiver occupation, and mental health status.ConclusionNearly half of the caregivers of individuals with schizophrenia reported high levels of EE, with increased caregiver burden associated with higher EE levels. Factors such as the duration of the patient’s illness, caregiver occupation, and mental health status were also associated with higher EE. Moreover, caregivers’ emotional responses and expressions are complex and dynamic. Thus, focusing on providing support to caregivers can have a positive impact on the well-being of both caregivers and individuals with schizophrenia.

Enhancing the Mental Health and Well-being of Family Caregivers Providing Informal Care in Ghana and Nigeria: A Commentary

Enhancing the Mental Health and Well-being of Family Caregivers Providing Informal Care in Ghana and Nigeria: A Commentary

Exploring the Sources and Experiences of Joy in Caregiving: Insights From Formal Caregivers in Long-Term Care.

To explore and understand the sources and experiences of joy in caregiving among formal caregivers in Canadian long-term care (LTC). A qualitative study with interpretative descriptive design. The participants consisted of 20 formal caregivers from a large public LTC home in British Columbia, Canada, focusing on those with at least 6 months of direct caregiving experience. Convenience sampling was conducted to recruit participants. Data were collected through 3 focus groups, with discussions moderated by the primary investigator, and were audio recorded and transcribed. Reflexive thematic analysis was used to identify themes, combining inductive and deductive strategies. To enhance rigor and trustworthiness, the research team engaged in reflective practices, leveraging diverse expertise, and ensuring a rich description of the study context. The study received ethical approval, and participant confidentiality was maintained through pseudonyms. Three interconnected themes of joy in caregiving were identified: (1) Joy in caregiving is a relational and dynamic process that evolves over time and coexists with other emotions, such as sadness and grief. (2) Joy is driven by an attitude shaped by the environment, stemming from an internal attitude, and contributing to a deeper sense of fulfillment despite challenges. (3) Joy in caregiving builds personal team resilience that reduces burnout, fostering compassion and creating a supportive atmosphere through gratitude and shared experiences, benefiting caregivers and residents. This study highlights the relational and evolving nature of joy in caregiving, the influence of internal attitudes and supportive environments, and the impact of joy on resilience and burnout. The findings contribute to characterizing how joy functions within caregiving contexts-specifically for LTC workers-and its broader implications for caregiver well-being and team dynamics.

Correlates of multicaregiving and singular caregiving among cancer caregivers and associations with caregiver well-being

Purpose Compare demographic, care provision, and health-related characteristics of individuals fulfilling multiple illness-related caregiving roles (i.e. multicaregiving) versus singular (cancer only) caregiving and investigate factors associated with caregivers’ mental and physical functioning. Design Cross-sectional national survey. Participants Family caregivers who self-reported illness-related caregiving for cancer survivors only (singular caregivers: n = 465) or for one or more family members with illnesses in addition to the cancer survivors (multicaregivers: n = 109). Methods Descriptive, logistic, and linear regression analysis. Findings Singular caregivers and multicaregivers were similar on demographic, care provision, and health characteristics. Caregiving group was not associated with caregivers’ mental or physical functioning. Several caregiver and care recipient characteristics were associated with mental and physical functioning for singular caregivers; however, only age was associated with multicaregivers’ mental functioning. Conclusions Uncovering correlates of multicaregiving can help describe who may serve in these roles and how concurrent care responsibilities may influence caregivers’ well-being.

Physical Activity, Sedentary Behaviour, Sleep and Mental Wellbeing in Family Caregivers of Adults With Intellectual and/or Developmental Disabilities.

Canadian 24-h movement guidelines recommend that adults achieve 150 min per week of moderate-to-vigorous physical activity (MVPA), 7-9 h of sleep per night and spend no more than 8-h per day sedentary to optimise health and wellbeing. Using a cross-sectional survey of 131 family caregivers of adults with intellectual and developmental disabilities, we aimed to (a) determine whether adherence to these guidelines predicts mental wellbeing in family caregivers and (b) explore the relationship between movement behaviours of family caregivers and their loved ones. While MVPA was found to weakly predict wellbeing, sleep and sedentary behaviour did not. The movement behaviours of the family caregivers were not closely related to that of their loved ones. Fostering physical activity is important to promote the wellbeing of adults with intellectual and developmental disabilities, as well as their family caregivers. Opportunities to be active together may be even more beneficial.

Desfechos relacionados à saúde mental em cuidadores de pessoas com demência: uma revisão sistemática de intervenções baseadas em yoga

ABSTRACT Mind-body interventions have been explored to enhance the psychological well-being of dementia caregivers; however, the specific effects of yoga practice remain underexamined. Objective: The aim of this study was to investigate the benefits of yoga on quality of life (QoL), life satisfaction, psychological well-being, attention, self-compassion, perceived stress, anxiety, depression, and caregiver burden for dementia caregivers. Methods: A comprehensive search was conducted on September 11, 2024, in databases including SciELO, PubMed, BVSalud, Web of Science, Embase, and PsycINFO, focusing on the effects of yoga for informal dementia caregivers compared to passive or active control groups through randomized and non-randomized trials. An initial review reduced 284 to 180 unique records; 172 studies were excluded, leaving 8 that met the inclusion criteria. Two authors independently selected and extracted data using a data extraction sheet based on the Cochrane Consumers and Communication Review Group. The Cochrane Risk of Bias tools (ROB2 and ROBINS-I) were employed to evaluate bias risk. Results: The review included three randomized and five non-randomized studies with a total of 161 participants, predominantly female (wives and daughters), with ages ranging from 39 to 76 years. Four studies utilized hatha yoga, while four employed non-traditional yoga. Significant improvements were observed in QoL, depression, stress, anxiety, and self-compassion, but not in caregiver burden. Furthermore, positive effects were more pronounced in face-to-face or online interventions than in recorded videos. On average, studies exhibited a moderate risk of bias. Conclusion: Yoga practice can serve as an effective intervention for enhancing the psychological aspects of dementia caregivers.

Short report: Integrated evaluations for autism spectrum disorder in pediatric primary care clinics.

Primary care providers often screen for autism during well child visits in the first few years of life and refer children for diagnostic evaluations when needed. However, most children do not receive a diagnosis until years later which delays access to services. Racism, socioeconomic status, and other systemic inequalities that limit access to health care further delay diagnostic evaluations. Mental health clinicians who work in primary care clinics can help address barriers to accessing diagnostic evaluation services once they are recommended by their primary care provider. However, mental health clinicians who work in primary care typically do not have training in diagnosing autism. The goal of this study was to evaluate a program training mental health professionals working in an urban primary care setting, primarily serving Black and Latinx families insured by Medicaid, to provide autism diagnostic evaluations. Two hundred and fifty children completed evaluations through the Autism in Primary Care (APC) program. The wait time to access an evaluation through APC was significantly shorter than through standard avenues of care (e.g. referring to a separate autism clinic). Referring primary care providers and caregivers endorsed high levels of satisfaction with the program. Conducting autism evaluations in primary care settings offers a promising opportunity to improve earlier diagnosis and treatment access for families, reduce inequities in care, and increase caregiver and child well-being.

MHealth-based intervention by community workers to support family caregivers of persons with dementia living at home: study protocol for a cluster randomised controlled trial

BackgroundIndia is undergoing a significant demographic shift with a growing older population, leading to an anticipated increase in people with dementia. Family caregivers, who are predominantly informal, carry the burden...

FINANCIAL HEALTH AND WELL-BEING OF RURAL CAREGIVERS OF OLDER ADULTS WITH CHRONIC ILLNESSES

Abstract Rural caregivers experience various financial stressors and challenges in providing care to their ill family members. Rural health disparities such as limited access to care, economic opportunities, resources, and support pose increased financial threats and insecurity resulting in poor patient and caregiver outcomes. Our study aimed to explore perceived financial stressors/challenges and their impacts on the self-care and well-being of rural caregivers of older family members with serious chronic illness. Using a purposive sampling approach, we did qualitative interviews among N=20 rural female caregivers caring for their older family member with any serious chronic illness. Interviews were done in-person and online, interview duration was about 30-45 minutes. Data was transcribed and analyzed deductively and inductively using thematic content analysis. Major financial impacts of caregiving included: leaving job or reducing work hours, time constraints on caregivers’ self-care, inability to balance family relations and caregiving roles, and difficulty navigating financial processes in the existing healthcare system. These challenges led to cutting down on groceries, reliance on retirement savings, and lack of personal time. Participants faced sleep and diet disruptions, shouldered financial decisions alone with limited or no support, and felt guilty over unfulfilled care recipient wishes due to financial constraints. Adequate self-care, coping, and well-being are associated with improved financial well-being and reduced financial threat. Caregiver support programs should focus on strategies and interventions to improve the financial well-being and overall quality of life of caregivers in the rural communities.

STRENGTHENING CAREGIVER SUPPORT: ASSESSING AND ADDRESSING CAREGIVERS’ MENTAL HEALTH NEEDS

Abstract Family caregivers (typically patients’ unpaid relatives/friends) are vital to patient care, but their mental health needs are often overlooked. This may be exacerbated by the fact that the caregiving role can be isolating, stressful, and time-consuming. This symposium highlights promising findings related to the identification of caregiver mental health and well-being needs and potential interventions in the community and Veterans’ Health Administration (VHA). First, Dr. Moo will present findings from a national survey of caregivers of older Veterans that shows the impact of care responsibilities, health care navigation, and environment on caregiver quality of life. Second, Dr. Van Orden will describe her investigation of suicide ideation, perceived burden, and social connection among caregivers of persons with dementia. Third, Dr. Humber will describe the impact of a tele-geriatric psychiatry service in two VHA regions on caregivers of rural-dwelling older Veterans with neurocognitive and or psychiatric disorders. Last, Dr. VanPutten will discuss adaptations of Dialectical Behavior Therapy (DBT) for caregivers in high-conflict caregiving situations with persons with neurocognitive disorders. She will describe adaptations made to a DBT skills training group related to the influence of caregiver physical health problems on detecting and applying core DBT skills. Dr. Ranak Trivedi, the national Training Director of the Elizabeth Dole National Center of Excellence for Veteran and Caregiver Research and member of the Research Collaborative of the National Alliance of Caregiving, will close with discussion of the presentations and will highlight opportunities for future caregiver mental health research.

FAMILY CAREGIVING FOR INDIVIDUALS WITH PARKINSON’S DISEASE AND LEWY BODY DEMENTIA IN CALIFORNIA

Abstract Parkinson’s Disease (PD) and Lewy Body Dementia (LBD) are related progressive neurodegenerative disorders that primarily affect older adults. Many individuals with PD/LBD require support from a family caregiver. However, caregivers of individuals with PD/LBD are infrequently studied. We extracted data from 2019-2022 in CareNavTM, a statewide electronic platform with data from caregivers served by the eleven California Caregiver Resource Centers, to compare caregiver sociodemographic characteristics, caregiving activities, and outcomes among caregivers of individuals with PD/LBD to those of individuals with Alzheimer’s Disease and related dementia (ADRD) and other chronic conditions (OCC). Care recipient condition was examined as a predictor of caregiving outcomes (e.g., loneliness, depressive symptoms, strain, and worsening health) using multivariable logistic regression models. There were a total of n=13,649 caregivers, with a majority caring for someone with ADRD (66%), followed by OCC (23%), and PD/LBD (10%). PD/LBD caregivers were more likely to be older, female, white, college-educated, and retired. PD/LBD caregivers were more likely to care for a spouse, spend >40hrs/wk on caregiving, assist with more personal care, and experience problems with the care recipient waking others up at night. In multivariable models, PD/LBD caregiving was independently associated with caregiving strain (OR 1.2; 95% CI [1.0-1.4], p= 0.01) and worsening health (OR 1.2; 95% I [1.1-1.4], p< 0.01), but not with depressive symptoms or loneliness. PD/LBD caregivers are a unique subset of family caregivers engaged in intense and complex care. Services and supports tailored to this condition and related needs may be warranted to optimize caregiver wellbeing.

Relationship-Centered Care and Humanitude

# Abstract This narrative literature review investigates the efficacy of relationship-centered care approaches, particularly the Humanitude methodology, in reducing care refusal among people living with dementia (PLWD). With care refusal affecting up to 60% of PLWD, this phenomenon presents significant challenges to healthcare delivery, quality of life for care recipients, and caregiver well-being. The study synthesizes current evidence on the prevalence, causes, and consequences of care refusal; examines relationship-centered care approaches in nursing; and explores how Humanitude techniques can contribute to reducing care refusal. Results indicate that relationship-centered care, especially Humanitude's focus on professionalizing gaze, speech, touch, and verticality, can significantly improve care quality, reduce neuropsychiatric symptoms, and alleviate caregiver burnout. Studies report a decrease in care refusal incidents, improved cooperation during care activities, and increased caregiver satisfaction following Humanitude implementation. However, successful integration of these approaches requires overcoming challenges such as changes in organizational culture. The review emphasizes the need for comprehensive training programs, ongoing support, and integration into nursing education curricula. Although promising, current research is limited by small-scale studies and heterogeneous implementation methods. Future research should focus on large-scale longitudinal studies across diverse healthcare settings to establish long-term efficacy and cost-effectiveness. As the global prevalence of dementia increases, incorporating relationship-centered approaches like Humanitude into nursing practice and education could revolutionize care quality for PLWD and significantly improve healthcare professionals' well-being.

Caregivers and Coping: Well-Being, Depression, and Coping Strategies Among Caregivers of Young Adults With Developmental Disabilities.

This 10-year study followed 134 caregivers of young adults with autism and intellectual disabilities, examining the effects of caregivers' coping strategies, sociodemographic features, and young adult symptomatology on caregiver well-being and depression. Lower caregiver education and higher young adult externalizing behaviors predicted lower well-being and higher depression among caregivers. Caregivers who were Black or mixed-race experienced higher depression than White caregivers. All five coping strategies investigated predicted changes in caregiver well-being and/or depression, with some effects moderated by young adult externalizing behaviors and sociodemographic features. Notably, higher use of positive coping among caregivers of adults with high externalizing behaviors predicted higher caregiver well-being and lower depression. Findings highlight the importance of effective coping strategies for improving caregiver mental health.

At-Home Care Program for Acute Myeloid Leukemia Induction Phase in Patients Treated with Venetoclax-Based Low-Intensity Regimens.

Background: Even though venetoclax in combination with azacitidine (VenAza) is considered a low-intensity regimen, its patients present a high incidence of cytopenia and infections during the first courses, making the initial management a challenging phase. Methods: This difficulty in our center led to the establishment of an At-Home (AH) program for ramp-up and follow-up patients during the VenAza combination induction phase focused on therapy administration, patient and caregiver education, and management of adverse events (AEs). A total of 70 patients with newly diagnosed acute myeloid leukemia (ND-AML) or relapsed/refractory AML (R/R AML) were treated with VenAza from March 2019 to May 2022. We compared outcomes between patients managed with a hospital-based (inpatient) approach and those managed through the AH program. Results: Despite most patients experiencing grade 3-4 cytopenias (96.9%), the incidence of serious infections and other AEs was comparable between both groups, with no significant difference in febrile neutropenia (42.3% vs. 27.8%, p = 0.38). Overall, the AH cohort demonstrated a significantly lower hospital readmission rate after ramp-up (29.5% vs. 84.6%, p = 0.001). Moreover, the inpatient cohort's admission days were longer than in the AH cohort (13 vs. 8, p = 0.28). Conclusions: AH management was feasible and safe, leading to better resource use, enhanced patient comfort, and improved treatment compliance. The potential of AH programs for managing low-intensity chemotherapy regimens can reduce hospital admissions and subsequently improve patient and caregiver well-being.

Assessing caregiver stress and resource needs in pediatric cancer care

BackgroundCaregivers of pediatric cancer patients often face significant stress and emotional strain, which can negatively impact their well-being and the quality of care provided to their children. Understanding the socio-demographic factors influencing caregiver stress and identifying the specific needs and resources required by caregivers are crucial for improving support systems in pediatric cancer care.Aim of the studyThis study aimed to analyze the levels of caregiver stress and their resource needs within pediatric cancer care.MethodsA cross-sectional descriptive design was used, and the study was conducted at El-Minia Oncology Center outpatient clinics, Egypt. The sample included 258 pediatric cancer caregivers selected based on predefined eligibility criteria. Data were collected using the Caregiver Needs and Resources Assessment (CNRA) and the King Stone Caregiver Stress Scale (KCSS), both of which demonstrated strong reliability and validity. Descriptive statistics, t-tests, ANOVA, and Pearson correlation coefficients were employed for data analysis using SPSS version 29, with a significance level set at p < 0.05.ResultsCaregivers reported moderate to high stress levels, with an average stress score of 34.59 (SD = 7.649). Age, education level, marital status, and income were significant predictors of caregiver stress (p < 0.001), with lower income and higher educational levels contributing to increased stress. The number of children, child’s age, and duration since cancer diagnosis also significantly impacted stress levels (p < 0.001). Correlation analysis revealed that psychological needs were positively related to stress (r = 0.488, p < 0.001), while spirituality was negatively associated with stress (r = -0.241, p < 0.001). Regression analysis indicated that physiological needs (ß = 0.331) and role conflict (ß = 0.294) were the strongest predictors of stress (R² = 0.636).Conclusion and implicationsThis study emphasizes the impact of socio-demographic factors on caregiver stress in pediatric cancer care. Targeted interventions that address caregivers’ psychological, social, and financial needs are essential to alleviate stress. Implementing caregiver-centered support programs in pediatric oncology can enhance the well-being of both caregivers and patients. Future research should explore sustainable strategies to further reduce caregiver burden.Clinical trial numberNot applicable.