Caregiver Outcomes Research Articles

Unraveling Perspectives on Cancer: Exploring Individual Understandings and Implications

Cancer remains a formidable global health challenge, affecting millions of individuals annually through its complex and multifaceted manifestations. This paper delves into the intricate landscape of cancer biology, treatment modalities, and the crucial role of caregivers in the care continuum. Fundamentally, cancer arises from genetic mutations that disrupt the regulatory mechanisms governing cell division and growth. These mutations enable unchecked proliferation, leading to the formation of tumors categorized as benign or malignant. Malignant tumors, capable of metastasis, pose significant health risks as they spread from primary sites to distant tissues and organs. The etiology of cancer involves a confluence of genetic, environmental, and lifestyle factors. Genetic predisposition plays a pivotal role, with inherited mutations contributing to familial patterns of cancer. Environmental exposures, such as radiation and carcinogens, alongside lifestyle choices like tobacco use and dietary habits, further influence cancer development and progression. Advancements in cancer treatment encompass a spectrum of modalities tailored to cancer type, stage, and individual patient characteristics. These include chemotherapy, radiation therapy, surgery, targeted therapy, hormone therapy, and immunotherapy, each aiming to eradicate cancer cells, halt proliferation, or alleviate symptoms. Despite therapeutic innovations, cancer remains a significant public health concern with substantial global incidence and mortality rates. Integral to the cancer care ecosystem are caregivers who provide indispensable support to patients throughout their journey. Caregivers, whether family members, friends, or professionals, navigate diverse challenges inherent in caregiving, including emotional and physical demands. Understanding and addressing caregivers' needs and stressors are essential for optimizing patient outcomes and caregiver well-being. Research into cancer caregiving illuminates the complexities of this role, highlighting the importance of resilience, self-care strategies, and social support in mitigating caregiver stress. Tailored interventions and support services are crucial in enhancing caregivers' capacity to deliver effective care while maintaining their own health and resilience. Moreover, research underscores the broader societal impact of cancer, encompassing quality of life considerations, employment challenges, and psychosocial impacts on families and communities. Insights gleaned from these studies inform comprehensive support programs aimed at improving outcomes for patients and caregivers alike. In conclusion, this paper synthesizes current research to provide a comprehensive understanding of cancer's biological underpinnings, treatment modalities, and the critical role of caregivers. By integrating insights from diverse perspectives, it aims to inform strategies for cancer prevention, early detection, treatment optimization, and caregiver support. Ultimately, the goal is to mitigate the burden of cancer through collaborative efforts across scientific, medical, and caregiving domains. Cancer, a complex and multifaceted disease, presents significant challenges to both patients and caregivers worldwide. This investigation explores the pivotal role of caregivers in cancer treatment, emphasizing their influence, encountered difficulties, and self-care practices. Caregivers, whether familial or hired, are integral to patients' well-being, providing practical, emotional, and physical support throughout their journey. Despite their indispensable role, caregivers face numerous stressors, necessitating resilience and self-care strategies. Prioritizing self-care, seeking social support, and employing stress-relief techniques are essential for caregivers to manage stress effectively while ensuring the optimal care of their loved ones. By addressing caregiver stress, promoting their health and well-being, and utilizing available resources, caregivers can enhance their ability to provide compassionate care and navigate the complexities of cancer treatment. This abstract underscores the critical need for acknowledging and supporting caregivers, recognizing their invaluable contribution to the cancer care continuum.

Use of Virtual Reality and Augmented Reality Technologies to Support Resilience and Skill-Building in Caregivers of Persons With Dementia: A Scoping Review.

Dementia presents a growing public health challenge with most affected individuals living at home, placing significant responsibility on their caregivers. Various interventions, from traditional support groups and education programs to emerging technologies, and more specifically virtual reality (VR) and augmented reality (AR), aim to enhance caregiver skills. While VR/AR shows promise in educating and fostering empathy among caregivers and healthcare professionals, its overall effectiveness and practicality in older adults and dementia care warrant further exploration. This review aimed to summarize currently available VR and AR interventions tailored for family caregivers of persons living with dementia (PLWD) in home or clinical settings, including their level of effectiveness, and to compile a summary of features that contributed to technology acceptance in family caregivers of PLWD. We conducted a systematic search in OVID PsychInfo, CINAHL, Google Scholar, and ERIC, as well as CADTH's Grey Matters, OpenGrey, National Technical Information Service, OAIster, and Health Quality Ontario, to comprehensively summarize the existing evidence underscoring the role of VR and AR in supporting education, resilience-building, and skills training for family caregivers of PLWD. The search terms were built with the assistance of a research librarian and involved synonyms for VR, AR, and dementia. Two screeners conducted a rigorous screening and data extraction to analyze and summarize findings. Studies were included if they focused on family caregivers engaging in interventions utilizing a three-dimensional VR environment and/or Metaverse for group learning in psychotherapeutic modalities such as psychoeducation, therapy, communication, and skill-building. The primary outcome of the studies was assessing measures of well-being (e.g., quality of life, communication, interaction, personhood) and learning outcomes for caregivers, while the secondary outcomes focused on identifying barriers and facilitators influencing the acceptability of VR/AR among dementia caregivers. Content analysis and descriptive statistics were used to summarize key trends in technology and evidence effectiveness and acceptability. Of the 1,641 articles found, 112 were included, with six articles meeting inclusion for analysis. Studies differed in duration and frequency of data collection, with interventions varying from single events to months-long programs, often employing home-based approaches using VR or online platforms. No study used AR. Usability issues and unclear benefits of use were identified as factors that hinder technology acceptance for dementia caregivers. However, technologies demonstrated engaging user experiences, fostering skill-building, confidence, and competence among caregivers. Positive psychological effects were also observed, facilitated by immersive VR and AR interventions, resulting in improved caregiver empathy and reduced stress, depression, and loneliness. VR and AR interventions for family caregivers ofPLWD show the potential to enhance empathy and skills and reduce stress. Challenges such as technological limitations and user inexperience issues persist. Home-based VR training aligns with caregiver comfort but lacks focus on financial aspects and cultural competencies. Co-design approaches offer solutions by addressing user concerns and promoting end-user engagement or empowerment.

Understanding modifiable caregiver factors contributing to child development among young children in rural Malawi.

This study examined modifiable caregiver factors influencing child development in Malawi using baseline data from 1,021 mothers and their children <2 years of age participating in a cluster-randomized controlled trial implemented in rural Malawi (2022-2025). We fit an evidence-based theoretical model using structural equation modelling examining four caregiver factors: (1) diet diversity (sum of food groups consumed in the past 24 h), (2) empowerment (assessed using the project-level Women's Empowerment in Agriculture Index), (3) mental health (assessed using the Self-Reported Questionnaire, SRQ-20), and (4) stimulation (number of stimulation activities the mother engaged in the past 3 days). Child development was assessed using the Malawi Development Assessment Tool (norm-referenced aggregate Z-score). The model controlled for child, caregiver, and household socioeconomic characteristics. Results showed that caregiver dietary diversity was directly associated with higher child development scores (standardized coefficient 0.091 [95% CI 0.027, 0.153]) and lower SRQ-20 scores -0.058 (-0.111, -0.006). Empowerment was directly associated with higher child development scores (0.071 [0.007, 0.133]), higher stimulation score (0.074 [0.013, 0.140]), higher dietary diversity (0.085 [0.016, 0.145]), and lower SRQ-20 scores (-0.068 [-0.137, -0.002]). Further, higher empowerment was indirectly associated with improved child development through enhancement of caregiver dietary diversity, with an indirect effect of 0.008 (0.002, 0.018). These findings highlight the important role that caregiver diet and empowerment play in directly influencing child development and other aspects of caregiver well-being. Interventions aimed at enhancing child development should consider these factors as potential targets to improve outcomes for children and caregivers.

Health Coaching Improves Outcomes of Informal Caregivers of Adults With Chronic Heart Failure: A Randomized Controlled Trial.

Caring for someone with heart failure takes an emotional and physical toll. Engaging in self-care may decrease stress and improve the health of informal caregivers. We conducted a randomized controlled trial testing the efficacy of a virtual health coaching intervention, compared with health information alone, on the self-care, stress, coping, and health status of heart failure caregivers. We enrolled 250 caregivers providing care at least 8 hours/week, reporting poor self-care, and able to use technology. All received a tablet device programmed with websites providing vetted information on heart failure and caregiving. Half were randomized to also receive 10 synchronous support sessions virtually with a health coach over 6 months. Data on self-care, stress, coping, and health status were collected at baseline and 3 and 6 months. Linear mixed-effects models were used to assess the interaction between time and treatment group. The sample was majority female (85.2%), White (62.2%), spouses (59.8%), and aged 55±13.6 years. Many were employed full time (41.8%). They had been caring for the patient 8 hours/day for a median of 3.25 years. In the intention-to-treat analysis, caregivers who received the health coach intervention had statistically and clinically greater improvement across 6 months compared with the control group in the primary outcome of self-care maintenance (5.05±1.99; P=0.01) and stress (-4.50±1.00; P<0.0001). Self-care neglect declined significantly (-0.65±0.32; P=0.04), but the difference between the treatment arms disappeared when the results were adjusted for multiple comparisons. Mental health status improved statistically but not clinically (3.35±1.61; P=0.04). Active coping improved in both groups but not significantly more in the intervention group (P=0.10). Physical health status was unchanged (P=0.27). This virtual health coaching intervention was effective in improving self-care and stress in heart failure caregivers.

Examining the Case for Palliative Care in Patients With Systemic Sclerosis.

Systemic sclerosis (SSc) is a complex, multiorgan disease that causes substantial and progressive symptoms and impairs quality of life. International guidelines recommend early, integrated palliative care for patients with advanced cardiopulmonary disease, such as heart failure and interstitial lung disease, as this care can improve patient, caregiver, and healthcare outcomes. In this article, we examine the potential need and role for palliative care in SSc. We propose that early, integrated palliative care could improve symptom control and quality of life and recommend a research agenda for palliative care in SSc to address the lack of evidence in this area.

Clinical Outcomes and Cost-Effectiveness of Collaborative Dementia Care

Long-term evidence for the effectiveness and cost-effectiveness of collaborative dementia care management (CDCM) is lacking. To evaluate whether 6 months of CDCM is associated with improved patient clinical outcomes and caregiver burden and is cost-effective compared with usual care over 36 months. This was a prespecified secondary analysis of a general practitioner (GP)-based, cluster randomized, 2-arm clinical trial conducted in Germany from January 1, 2012, to December 31, 2014, with follow-up until March 31, 2018. Participants were aged 70 years or older, lived at home, and screened positive for dementia. Data were analyzed from March 2011 to March 2018. The intervention group received CDCM, comprising a comprehensive needs assessment and individualized interventions by nurses specifically qualified for dementia care collaborating with GPs and health care stakeholders over 6 months. The control group received usual care. Main outcomes were neuropsychiatric symptoms (Neuropsychiatric Inventory [NPI]), caregiver burden (Berlin Inventory of Caregivers' Burden in Dementia [BIZA-D]), health-related quality of life (HRQOL, measured by the Quality of Life in Alzheimer Disease scale and 12-Item Short-Form Health Survey [SF-12]), antidementia drug treatment, potentially inappropriate medication, and cost-effectiveness (incremental cost per quality-adjusted life year [QALY]) over 36 months. Outcomes between groups were compared using multivariate regression models adjusted for baseline scores. A total of 308 patients, of whom 221 (71.8%) received CDCM (mean [SD] age, 80.1 [5.3] years; 142 [64.3%] women) and 87 (28.2%) received usual care (mean [SD] age, 79.2 [4.5] years; 50 [57.5%] women), were included in the clinical effectiveness analyses, and 428 (303 [70.8%] CDCM, 125 [29.2%] usual care) were included in the cost-effectiveness analysis (which included 120 patients who had died). Participants receiving CDCM showed significantly fewer behavioral and psychological symptoms (adjusted mean difference [AMD] in NPI score, -10.26 [95% CI, -16.95 to -3.58]; P = .003; Cohen d, -0.78 [95% CI, -1.09 to -0.46]), better mental health (AMD in SF-12 Mental Component Summary score, 2.26 [95% CI, 0.31-4.21]; P = .02; Cohen d, 0.26 [95% CI, -0.11 to 0.51]), and lower caregiver burden (AMD in BIZA-D score, -0.59 [95% CI, -0.81 to -0.37]; P < .001; Cohen d, -0.71 [95% CI, -1.03 to -0.40]). There was no difference between the CDCM group and usual care group in use of antidementia drugs (adjusted odds ratio, 1.91 [95% CI, 0.96-3.77]; P = .07; Cramér V, 0.12) after 36 months. There was no association with overall HRQOL, physical health, or use of potentially inappropriate medication. The CDCM group gained QALYs (0.137 [95% CI, 0.000 to 0.274]; P = .049; Cohen d, 0.20 [95% CI, -0.09 to 0.40]) but had no significant increase in costs (437€ [-5438€ to 6313€] [US $476 (95% CI, -$5927 to $6881)]; P = .87; Cohen d, 0.07 [95% CI, -0.14 to 0.28]), resulting in a cost-effectiveness ratio of 3186€ (US $3472) per QALY. Cost-effectiveness was significantly better for patients living alone (CDCM dominated, with lower costs and more QALYs gained) than for those living with a caregiver (47 538€ [US $51 816] per QALY). In this secondary analysis of a cluster randomized clinical trial, CDCM was associated with improved patient, caregiver, and health system-relevant outcomes over 36 months beyond the intervention period. Therefore, it should become a health policy priority to initiate translation of CDCM into routine care. ClinicalTrials.gov Identifier: NCT01401582.

The Effectiveness of Child-Parent Psychotherapy on Traumatized Preschoolers and Their Caregivers: A Swedish Multi-Site Study

ABSTRACT Introduction: Trauma affects a child’s mental health and appears to be associated with challenges in caregiver-child dynamics. Nearly half of child trauma victims are under the age of six, yet few interventions are designed for this age group. Child-Parent Psychotherapy (CPP) is an attachment-based trauma treatment for preschool-aged victims of adversities and their caregivers. This study examines the effectiveness of CPP when implemented in a Swedish naturalistic multi-site clinical setting. Method: 57 children (age 2–6 years) with potentially traumatic experiences and their caregivers participated. They were recruited from 12 mental health services providing child treatment. The study has a one-group, pretest-posttest design. Outcome measures covered posttraumatic stress and general psychological symptoms in children and caregivers and caregivers’ perceptions of their relationship with their child. Paired t-tests were used to calculate within-group differences. Effect sizes were computed as Cohen’s d and associations between child and caregiver outcomes as Pearson’s correlation coefficient (r). A hierarchical regression analysis was tested to explore the correlation analysis. Results: Reductions in posttraumatic stress and general psychological symptoms with small-to-medium effect sizes were found in children and caregivers. Caregivers reported perceived improvements in their relationship with their child, with associations to findings in child posttraumatic stress reduction. Discussion: Findings support earlier results that CPP may be a suitable choice of treatment for preschoolers exposed to potentially traumatic events, such as violence. The dyadic treatment model seems to address the association between child traumatic stress and caregivers’ perceptions of the caregiving relationship. Further dissemination testing is suggested.

Dyadic relationships between informal caregivers and older adults with chronic heart failure: A systematic review and meta-synthesis.

To synthesise the qualitative evidence on dyadic relationships between informal caregivers (ICs) and older adults with chronic heart failure (HF). A systematic review and meta-synthesis were conducted. Eight databases were searched for English peer-reviewed studies and grey literature published from inception to 27 February 2024. Qualitative and mixed-method studies involving older adults ≥ 55 years old with chronic HF and discussing patient-caregiver relationships in community settings were included. Data were synthesised using Sandelowski and Barroso's 2-step framework. A meta-summary was developed using thematic analysis, and findings were synthesised using the Theory of Dyadic Illness Management. Twenty-four studies from 2008 to 2024 were included (n = 580 participants). The meta-summary consisted of four themes and nine subthemes: (1) Characteristics of dyad relationships, (2) How both parts of the dyad care for each other, (3) Chronic HF and dyad relationships, (4) Knowledge of managing chronic HF. These were reorganised into the meta-synthesis: dyadic appraisal, dyadic management behaviours, dyadic health, contextual factors affecting dyadic relationships and management behaviours, and illness management as a dyadic phenomenon. Investigating relationship dynamics and their impact on dyads and chronic HF self-care is vital. Where possible, healthcare providers should prioritise dyadic care when caregivers are involved and deliver individualised care to improve patient and caregiver outcomes. Assessing and optimising dyadic relations, addressing individual perceptions and needs as part of clinical care, and before implementing self-care interventions in research may help ensure that self-care is appropriately tailored and would not be hindered by relationship conflicts.

Self-Directed Home- and Community-Based Services Improve Outcomes for Family Caregivers: A Systematic Review.

Self-direction is an approach that allows older adults and people with disabilities to determine the home- and community-based services they receive, including the ability to hire caregivers of their choice. Self-direction has been shown to improve outcomes for the service recipients. The promotion of choice and control in self-direction may also affect family caregivers. We conducted a systematic review examining the impact of self-direction on a broad range of caregiver outcomes. We conducted a systematic review guided by PRISMA guidelines. Literature search was conducted in 8 databases. We appraised risk of bias using the Joanna Briggs Institute critical appraisal checklists and assessed certainty of evidence using the GRADE framework. Sixteen studies meeting inclusion criteria were included. We found, with moderate certainty, that self-direction is associated with improved caregivers' personal and social well-being. Caregivers also reported reduced unmet needs and increased access to care for the care recipients under self-direction. Self-direction did not appear to reduce caregiving hours. With less certainty, self-direction was also positively associated with increased respite care use, perception of choice, and intention to continue caregiving by caregivers. Beyond delivering person-centered services that improve recipient outcomes, self-direction may also improve the outcomes of family caregivers.

Humanistic burden of haemophilia A without inhibitors: A cross-sectional analysis of the HemoLIFE study.

To evaluate the impact of haemophilia A without inhibitors on humanistic outcomes in patients and caregivers. Herein, we report a cross-sectional analysis of the baseline data of persons with haemophilia (PWH) participating in the prospective study HEMOLIFE. These data are part of a prospective, observational, and multicentre study currently being conducted in 20 hospitals in Spain by haematologists. We included subjects 12 years or older diagnosed with haemophilia. The evaluations included the Maladjustment Scale, Haemophilia-Specific Quality of Life Questionnaire for Adults (HaemoQol)/HaemoQol Short Form (Children), haemophilia-specific version of the Work Productivity and Impairment Questionnaire plus the Classroom Impairment Questionnaire (WPAI+CIQ:HS), Haemophilia Activity List (HAL)/Paediatric Haemophilia Activities List (pedHAL), visual analogue scale (VAS) for evaluating pain, Coping Pain Questionnaire-Reduced (CAD-R), and Hospital Anxiety and Depression Scale (HADS). A total of 81 PWH were recruited at 18 centres; 66 PWH were ≥18 years (i.e., adults), and PWH 15 were <18years (i.e., paediatric patients). Out of the 79 evaluable subjects, 16 (20%) showed an impact of haemophilia on daily life, and the areas most affected were "leisure time" (58% showed maladjustment) and "work/studies" (47% showed maladjustment). Patients reported a higher impact of haemophilia on quality of life (mean [SD] of the transformed score) in the dimensions of "sport" (49.4 [28.6]), "physical health" (40.5 [25.8]) and "future" (37.7 [28.9]). In adults, according to HAL scores, greater impairment of function was observed in "lying/sitting/kneeling/standing," "function of legs" and "leisure activities and sports," with mean normalized scores of 64.7, 65.1 and 69.0, respectively. Productivity was mostly impacted by presenteeism. The pain was infrequent and moderate. According to the HADS scores, nine (11.5%) patients had clinical anxiety and depression. PWH without inhibitors exhibited impairments in adjustment, quality of life and functionality, especially related to leisure and sports activities, and exhibit relevant levels of anxiety and depression.

Pilot Testing Educational Videos for Black Caregivers Receiving Home Hospice Care.

Black caregivers face distinct challenges in symptom management when providing end-of-life care. Educational interventions may improve caregiver preparedness and competency by providing information on symptom management. This study pilot tested 4 culturally tailored caregiver educational videos about symptom management for Black caregivers receiving home hospice care at a large, urban, nonprofit hospice organization to determine feasibility and acceptability, along with their potential impact on caregiver outcomes. All participants (N = 10) agreed to watch the 4 videos and found the videos to be helpful; 90% (n = 9) shared that they would recommend them to other Black caregivers receiving home hospice care. Total preparedness scores increased from a mean score of 23.5 preintervention to 28.3 postintervention. Caregiver competency scores increased from 13.8 at preintervention to 14.3 at postintervention. Caregivers' comfort and knowledge scores increased from preintervention to postintervention for all 7 end-of-life topics presented in the 4 videos. This study found that it was feasible and acceptable to show Black caregivers culturally tailored educational videos related to issues regarding symptom management. Many found the videos to be helpful and the topics to be relatable. There were trends toward improvement in preparedness and competency. Future studies examining efficacy are needed to determine the impact of this intervention.

Disparity in the Burden of Caring for Older Persons between Families Living in Housing Estates and Traditional Communities in Thailand.

Thailand's rapid population aging and reliance on family-based long-term care requires research into disparities in family caregiver burden. Since the type of residence matters to the caregiving outcome, this research aimed to examine the difference in caregiver burden between residents of private housing estates and traditional village communities. This cross-sectional study was conducted with 1276 family caregivers of community-dwelling Thai older adults, in Chiang Mai province, Thailand. The caregiver burden was examined using the Caregiver Burden Inventory (CBI), and the care recipients' dependency status was examined using Barthel's Activity of Daily Living (ADL). Descriptive analysis, multivariate analysis of variance test, and multiple logistic regression analysis were performed. Family caregivers living in a traditional village community were 1.607 times more likely to experience emotional burden (adj. OR 1.607, 95% CI: 1.049, 2.462) and 2.743 times more likely to experience overall caregiver burden (adj. OR: 1.163, 95% CI: 1.163, 6.471) compared to those in the private housing estate group. Our findings showed significant differences in caregiver burden based on residential area, contributing with insights to evidence-based policies, interventions, and programs to minimize disparities and promote family caregivers' health and well-being.

Quality of life in patients with atrial fibrillation and multimorbidity, and their caregivers: results from the AFFIRMO international online survey

Abstract Introduction Patients with atrial fibrillation (AF) often have additional concomitant chronic conditions that affect their clinical management and quality of life (QoL). The AFFIRMO study aims to examine ways of optimising care and self-management for AF patients with multimorbidity. Methods An online survey open to AF patients and their caregivers was distributed to five countries (UK, Italy, Denmark, Romania and Spain) between June 2022 and January 2023. QoL among patients was assessed using the EQ-5D-3L questionnaire, while life changes for caregivers was assessed using the Bakas Caregiving Outcome Scale (BCOS). Results 659 patients (47.2% males, mean age: 70.9 [SD 10.2] years), and 201 caregivers (26.9% males, mean age 58.3 [SD 15.2] years) participated in the survey. Patients reported significant sex differences in health status (Table 1), with men reporting an overall higher QoL, while women reported greater impairment in mobility and usual activities, with higher levels of pain/discomfort. Patients aged &amp;gt;65 years reported greater impairment in QoL compared to the younger ones, with patients from Southern Europe reporting greater impairment in self-care than those from Eastern or Northern Europe. Patients with higher education reported better QoL. Among caregivers (Table 2), men reported less negative life changes compared to women, with the latter also reporting more pain/discomfort. Caregivers aged &amp;lt;65 years reported greater impairment in mobility and usual activities than those aged ≥65 years, and those aged &amp;lt;50 years reported a higher level of anxiety/depression. Caregivers aged &amp;lt;75 years reported greater negative life changes than those aged ≥75 years. Caregivers from Spain reported less negative life changes compared to caregivers from other countries. Caregivers with further education level reported better overall quality of life and greater negative life changes compared to caregivers with lower levels of education. Conclusions The QoL of patients with AF and multimorbidity seems to be compromised especially in females and in the older ones. The caregivers of these patients also experience negative life changes, in particular those with younger age. The results of the AFFIRMO study will help in the development of better clinical and self-management strategies for AF patients with multimorbidity to reduce the negative impact on QoL.Differences in patients' QoLDifferences in caregivers' QoL

Child and caregiver predictors of primary caregiver participation in families of school-aged Autistic children.

Engaging in meaningful activities (e.g., leisure, spiritual, fitness) significantly affects caregivers' quality of life (QoL), yet the determinants of participation in caregivers of Autistic children remain largely unknown. The current study examined child and caregiver correlates of primary caregiver participation in meaningful activities. One hundred and six primary caregivers of Autistic children (7-12 years) were recruited from three unique cohorts of Autistic children in this cross-sectional study. Primary caregivers completed online questionnaires measuring occupational gaps (i.e., desired activities caregivers are not participating in), QoL, parenting stress, perceived family outcomes, and social support. In addition to undertaking direct assessments of children's cognition and language, primary caregivers also reported on their child's adaptive behavior, social-emotional skills, and participation. Caregivers reporting fewer occupational gaps (i.e., ≤2 desired activities) were more likely to have Autistic children with no co-occurring conditions, who were older, and with better adaptive behaviors, social-emotional skills, and more frequent home and school participation, compared to caregivers reporting many gaps (i.e., ≥3 desired activities). Caregivers with fewer occupational gaps also reported improved QoL, parenting stress, social support, perceived community inclusiveness, and family outcomes. Logistic regression analysis identified child age, child adaptive behavior, social-emotional skills, home participation, and the caregivers' perceived family outcomes and QoL as important predictors of their occupational gaps. The findings demonstrate that caregiver participation in desired activities was associated with increased functional ability and independence of the child, as well as their perceived capacity to meet their child's needs. Supporting parents' sense of efficacy in meeting their children's needs and building their skills and knowledge will serve to improve both caregiver and child outcomes.

Communication between Caregivers of Adults with Cancer and Healthcare Professionals: a Review of Communication Experiences, Associated Factors, Outcomes, and Interventions.

Family/unpaid caregivers play an important role in cancer care. This review aims to summarize caregiver communication experiences with healthcare professionals (HCPs). The Caregiver-Centered Communication model defines five core functions that HCPs should achieve when interacting with caregivers, including fostering relationships, exchanging information, recognizing and responding to caregiver emotions, aiding in decision making, and assisting in patient care management. The literature shows that caregivers have both positive and negative communication experiences with HCPs with respect to these five core functions. Factors at the caregiver (e.g., demographic characteristics, information sources, caregiving duration, health status), patient (e.g., demographic and clinical characteristics), and HCP levels (e.g., time constraints in clinical settings, communication skills) are associated with caregiver-HCP communication quality. Studies further show that these communication experiences may affect caregiver outcomes, including quality of life, mental health, resilience, and satisfaction with cancer care. Moreover, poor quality caregiver-HCP communication is associated with patient readmission to the hospital and unmet care needs. Interventions for caregivers or patient-caregiver dyads have been shown to enhance caregiver confidence and increase their engagement in communication with HCPs. Interventions for HCPs have shown efficacy in improving their communication skills, particularly in involving caregivers in decision-making discussions. Given time constraints during medical visits, we suggest conducting a caregiver assessment by navigators prior to visits to understand their communication needs. Additionally, reimbursing HCPs for time spent communicating with caregivers during visits could be beneficial. More research is needed to better understand how to enhance caregiver-HCP communication quality.

Support for Family Caregivers: Implications of Work Strain and Its Intersections With Formal and Informal Help.

This study seeks to assess whether and to what extent caregiver work strain is ameliorated by the presence of additional family caregivers and formal service use. Building on the stress process model and stress-appraisal moderation, we examine how formal and informal support varies in associations with caregiver distress for men and women. This study utilizes data provided by the National Study of Caregiving, which is linked with care-recipient information from the National Health and Aging Trends Study. Using panel methods for the pooled waves, we estimated caregiver outcomes of emotional well-being on the intersection of experiences of work strain and (a) the number of additional caregivers and (b) utilization of 6 different types of formal support. Additional informal caregivers for each respective care recipient are associated with lower levels of distress, although utilization of formal services (paid help and Medicaid funding) is positively associated with caregiver distress. Informal support can offset the impact of work strain, but interactions are only evident for women caregivers. The findings suggest that informal support, exemplified by the number of additional caregivers, corresponds with reduced emotional distress among employed caregivers and can mitigate the negative impacts of work strain. However, positive associations between formal support and male and female caregiver distress suggest that the context of formal services may offer limited or untimely support. This study is expected to broaden our understanding of informal caregiving in later life and provide practical implications on how to sustain informal care.

Financial strain, health behaviors, and psychological well-being of family caregivers of older adults during the COVID-19 pandemic

ObjectivesThis study aims to examine the change in financial strain, health behaviors, and psychological well-being of family caregivers of older adults during the COVID-19 pandemic and explore the differences in mental health outcomes by gender, race, and relationship status. MethodsUsing the 2020 National Health and Aging Trends Study COVID-19 supplement, our sample included 2026 family caregivers of older adults. Structural equation modeling was conducted. ResultsCaregivers with financial strain showed worse mental health than those with no financial strain. Female or adult children caregivers reported significantly less time walking, more financial strain, and a higher level of negative mental health outcomes compared to male or spouse caregivers; non-White caregivers reported greater positive mental health outcomes compared to White caregivers during the pandemic. DiscussionHealth professionals should consider the financial and mental health impact of COVID-19 among family caregivers when designing and delivering caregiver support programs. InnovationThis study provides nationally representative estimates of several important health behaviors and health outcomes for caregivers of older adults during and after the COVID-19 pandemic, helping to fill the knowledge gap about the characteristics of caregivers whose health and well-being were most affected by the pandemic.

A commentary on the article 'Family caregiver outcomes after participating in a hospital-based family involvement program after major gastrointestinal surgery: a subgroup analysis of a patient preferred cohort study'.

A commentary on the article 'Family caregiver outcomes after participating in a hospital-based family involvement program after major gastrointestinal surgery: a subgroup analysis of a patient preferred cohort study'.

Comparing Caregiving Outcomes Among Male and Female Parents of Autistic Adults

This study compared aging male and female parents of autistic adults to determine if self-reported caregiver health, quality of life, caregiver burden, informal social support, and formal social support differ between the two groups. Fifty-seven female caregivers and 57 male caregivers were selected using data from a larger study. T-tests for independent samples compared dependent variables between female and male parents. Statistically significant differences were found on four dependent variables, self-reported health, quality of life, overall caregiver burden, and emotional burden. Male parents had better self-reported health, greater quality of life, and less emotional burden, while female parents experienced greater overall caregiver burden. Social workers and other professionals should be cognizant of differences experienced by aging caregivers when providing tailored support and services.

Changes in Caregiver Outcomes After Participation in the Engaged Eaters Program: A Caregiver-Mediated Feeding Intervention for Autistic Children and Their Families.

Caregivers are essential partners in caregiver-mediated interventions that build on family routines and practices. Research identifying how participation as an intervention partner influences caregivers' outcomes, including stress and self-efficacy, is scarce. To evaluate caregiver outcomes (stress, self-efficacy, and positive feeding responses and confidence) after participation in the Engaged Eaters Program. Quasi-experimental pretest-posttest design. In-home via telehealth. Fourteen primary caregivers of an autistic child (ages 2-7 yr) with feeding challenges. The Engaged Eaters Program-Telehealth, a caregiver-mediated 6-mo in-home telehealth feeding intervention for autistic children ages 2 to 7 yr that included 24 intervention visits, eight caregiver training modules, and consultation with a dietician. Relationships between child feeding challenge severity and caregiver outcomes and individual differences in caregivers' intervention responses were evaluated. We assessed caregivers' stress (Parenting Stress Index, Fourth Edition Short Form), self-efficacy (Parent Sense of Competence Scale), Positive Feeding Responses and Confidence (PFRC; composite score of items from other assessments), and individual intervention response using pre- to postintervention change in scores. Exploration of individual differences revealed that only caregivers with intake PFRC scores below the mean made significant improvements by the end of the intervention. No significant group-level changes were identified for stress, self-efficacy, or PFRC. Feeding challenge severity was not significantly related to caregiver outcomes. The results emphasize the importance of considering baseline practices, efficacy, and caregiver confidence when engaging caregivers in intervention. Future research should explore the nuanced relationship between caregiver outcomes and child characteristics. Plain-Language Summary: Caregivers are essential partners with feeding interventions that build on family routines and practices. When working with caregivers, occupational therapists should consider caregivers' readiness for and responses to an intervention because intervention practices may differentially affect caregivers' parenting practices, confidence, and self-efficacy. Caregivers' responses may also affect the overall effectiveness of a caregiver-mediated intervention. Positionality Statement: The term caregiver-mediated in used throughout this article in place of parent-mediated to be inclusive of all types of caregivers.