The impact of caregiving for children with chronic conditions on the HPA axis: A scoping review.

Caregiving has been robustly linked to caregiver health through the dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis in the context of caregiving for an adult with a chronic illness. However, little research examines the physiological impact of caregiving for a child with a chronic illness despite high burden and unique stressors. In this review, we explore the links of caregiving for a child with a congenital, chromosomal, or genetic disorder to the regulation or dysregulation of the HPA axis. A search was conducted in PubMed, Embase, and the Web of Science and 15 studies met inclusion criteria. Overall, there were inconsistent links of caregiving to HPA axis functioning, perhaps due to the heterogeneity across disease contexts, study designs, and biomarker measurement. Future research should standardize measurement and study designs, increase participant diversity, and examine moderators of the links of caregiving to the HPA axis.

A Toolkit for Delirium Identification and Promoting Partnerships Between Carers and Nurses: A Pilot Pre-Post Feasibility Study.

BACKGROUND: Delirium is frightening for people experiencing it and their carers, and it is the most common hospital-acquired complication worldwide. Delirium is associated with higher rates of morbidity, mortality, residential care home admission, dementia, and carer stress and burden, yet strategies to embed the prevention and management of delirium as part of standard hospital care remain challenging. Carers are well placed to recognize subtle changes indicative of delirium, and partner with nurses in the prevention and management of delirium. OBJECTIVE: To evaluate a Prevention & Early Delirium Identification Carer Toolkit (PREDICT), to support partnerships between carers and nurses to prevent and manage delirium. DESIGN: A pre-post-test intervention and observation study. MAIN MEASURES: Changes in carer knowledge of delirium; beliefs about their role in partnering with nurses and intended and actual use of PREDICT; carer burden and psychological distress. Secondary measures were rates of delirium. PARTICIPANTS: Participants were carers of Indigenous patients aged 45 years and older and non-Indigenous patients aged 65 years and older. INTERVENTION: Nurses implemented PREDICT, with a view to provide carers with information about delirium and strategies to address caregiving stress and burden. KEY RESULTS: Participants included 25 carers (43% response rate) (n = 17, 68% female) aged 29-88 (M = 65, SD = 17.7 years). Carer delirium knowledge increased significantly from pre-to-post intervention (p = < .001; CI 2.07-4.73). Carers' intent and actual use of PREDICT was (n = 18, 72%; and n = 17, 68%). Carer burden and psychological distress did not significantly change. The incidence of delirium in the intervention ward although not significant, decreased, indicating opportunity for scaling up. CONCLUSION: The prevention and management of delirium are imperative for safe and quality care for patients, carers, and staff. Further comprehensive and in-depth research is required to better understand underlying mechanisms of change and explore facets of nursing practice influenced by this innovative approach.

The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial.

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance. DISCUSSION: If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing. TRIAL REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

A longitudinal investigation of caregiving and adolescent post-traumatic stress symptoms during COVID-19: evidence for high resting RSA as a susceptibility factor.

BACKGROUND: Post-traumatic stress symptoms (PTSS) were the most frequently reported mental health concern for youth during COVID-19, yet variations in youth's PTSS responses warrant empirical consideration. Features of the caregiving environment influence youth's responses to environmental stressors, and youth's parasympathetic nervous system regulation may qualify the magnitude and/or direction of these effects. This prospective investigation evaluated diathesis stress and differential susceptibility models of caregiving and parasympathetic influences on youth's PTSS responses to COVID-19. METHOD: Participants were 225 caregiver-youth dyads (youth 49.8% female at birth; 88.4% non-white) followed from childhood through adolescence and COVID-19. Youth's resting respiratory sinus arrhythmia (RSA; Mage = 6.11, s.d. = 0.21), caregiving features (i.e. attachment security [youth Mage = 12.24, s.d. = 0.35] and caregiver internalizing psychopathology [caregiver Mage = 39.29, s.d. = 6.78]) were assessed pre-pandemic. Youth's PTSS was assessed one year prior to the US COVID-19 pandemic (Mage = 14.24, s.d. = 0.50) and during the spring of 2020 at the height of the pandemic (Mage = 15.23, s.d. = 0.57). RESULTS: Youth's PTSS increased during COVID-19. Youth with relatively high resting RSA evidenced the lowest PTSS when their caregiving environment featured high attachment security or low caregiver internalizing problems, but the highest PTSS when their caregiving environment featured low attachment security or high caregiver internalizing problems. In contrast, PTSS levels of youth with relatively low or average resting RSA did not differ significantly depending on attachment security or caregiver internalizing. CONCLUSIONS: Results are consistent with a differential susceptibility hypothesis, wherein relatively high resting RSA conferred heightened sensitivity to caregiving environments in a for-better-and-for-worse manner during COVID-19.

Infant and preschool attachment, continuity and relationship to caregiving sensitivity: findings from a new population-based Australian cohort.

BACKGROUND: Here, we report new prevalence and temporal stability data for child attachment and parental caregiving behaviour, from infancy (1 year) to preschool (4 years). METHODS: Attachment (SSP) and caregiving data (MBQS) were from observations of parents and their infants and preschoolers, who represent the third generation of participants within an Australian longitudinal cohort. RESULTS: At 1 year (n = 314 dyads) and at 4 years (n = 368 dyads), proportions assessed secure were 59% and 71%, respectively. Proportions assessed avoidant were 15% and 11%; ambivalent 9% and 6%, and disorganised 17% and 12%, at 1 and 4 years. Continuity of attachment pattern was highest for the infant secure group. Of dyads initially classified disorganised in infancy, 36% remained so at the preschool assessment. Attachment and caregiving continuities across the infancy-preschool period were highest for the stable secure attachment group and lowest for the stable insecure attachment group. Loss of secure attachment to mother by age 4 years correlated with decreased maternal caregiving sensitivity, and acquisition of secure status by age 4 was associated with increased maternal sensitivity. We found no difference in caregiving sensitivity scores for mothers and fathers for female and male preschool children. CONCLUSIONS: The contemporary infant and preschool attachment proportions we report here closely mirror the patterns of those reported in prior decades, with an inclination towards secure base relationships. Our findings alert practitioners anew to the responsiveness of early attachment status to change in caregiving responsiveness and support ongoing investment in early identification of disorganised attachment.

Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

Association of Caregiving Receipt With Mental Health Utilization in a National Cohort of Older Adults.

OBJECTIVE: There exist significant age disparities in mental health (MH) utilization, such that older adults, including older veterans, are much less likely to use MH services. In-home caregivers represent a novel, yet understudied, pathway to increase appropriate utilization. We sought to examine the association between receiving caregiving assistance and MH utilization and test moderation effects of cognitive status and depression severity in a sample of older veterans. METHODS: Cross-sectional, mixed effects logistic regression with moderation analyses was used with a unique data resource combining survey data from the 2000-2012 U.S. Health and Retirement Study with Veterans Affairs (VA) healthcare administrative records. The analytic sample included N=1,957 Community-dwelling veterans (mean age 68.2 [9.7]), primarily male (96.5%) and non-Hispanic white (77.0%). Measures included MH utilization extracted from VA records or self-report; CESD-8 for depressive symptoms; and the Langa-Weir cognitive status classification using the modified TICS. RESULTS: After accounting for demographics, spousal caregiver availability, health factors, and socioeconomic status, caregiving receipt was associated with two-fold odds of MH utilization, compared to receiving no assistance (8,839 person-year observations; OR = 2.02; 95% CI 1.54-2.65) and remained similar following VA policy changes to enhance MH access. Exploratory analyses revealed that categories of cognition and depressive symptoms may moderate the association. CONCLUSION: Receipt of any in-home caregiving is associated with increased likelihood of MH use by older adults. Caregivers may represent an underutilized resource to reduce age-related mental health access disparities.

Caregiving Experiences as Mediators Between Caregiving Stressors and Anticipatory Grief in Severe Dementia: Findings From Longitudinal Path Analysis.

OBJECTIVES: Family caregivers of older adults with severe dementia often experience anticipatory grief. We aimed to investigate the temporal association of caregiving stressors (older adults' behavioral symptoms, and caregiver-older adult co-residence and emotional closeness) and caregivers' anticipatory grief, and its mediation by positive and negative caregiving experiences. DESIGN: Prospective cohort. SETTING: Singapore. PARTICIPANTS: About 169 family caregivers of older adults with severe dementia were surveyed every 4 months for 4 years (up to 13 surveys). MEASUREMENTS: We measured anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form, negative caregiving experiences using the Caregiver Reaction Assessment scale, positive caregiving experiences using Gain in Alzheimer Care Instrument and behavioral symptoms using the Cohen-Mansfield Agitation Inventory. We implemented a cross-lagged panel model to test mediation, a form of longitudinal path analysis. RESULTS: About 35% of the caregivers reported high anticipatory grief at least once during the study period. Older adults' behavioral symptoms had a significant direct effect (Standardized coefficient [95% confidence interval]: 0.12 [0.04, 0.21]) on caregivers' anticipatory grief. Negative experiences mediated the significant indirect effect of older adults' behavioral symptoms (0.16 [0.06, 0.25]) and coresidence (0.16 [0.07, 0.25]) on caregivers' anticipatory grief. Positive caregiving experiences did not mediate any path. CONCLUSIONS: Findings indicate a temporal association between caregiving stressors and anticipatory grief, mediated by negative caregiving experiences. Routine screening for anticipatory grief, and interventions to address caregiver stressors and negative caregiving experiences may alleviate caregivers' grief.

A review of family caregiving intervention trials in oncology.

This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations. CA Cancer J Clin 2017. © 2017 American Cancer Society. CA Cancer J Clin 2017;67:318-325. © 2017 American Cancer Society.

Preliminary Impact of Group-Based Interventions on Stigma and the Mental Health of Caregivers of Adolescents Living with HIV in Uganda.

This study examined the preliminary impact of group-cognitive behavioral therapy (G-CBT) and a family-strengthening intervention delivered via multiple family groups (MFG-FS) on HIV stigma, parenting stress, and the mental health of caregivers of adolescents living with HIV. We analyzed data from the Suubi4Stigma study (2020-2022), a two-year pilot randomized clinical trial for adolescents and their caregivers (N = 89 dyads), recruited from nine health clinics in Uganda. Adolescent-caregiver dyads were randomized to three intervention conditions delivered over three months, with data collected at baseline, three and six-months follow-up. We fitted mixed-effects linear regression models to test the effect of the interventions on caregiver outcomes over time. At six months, caregivers randomized to the MFG-FS condition reported lower levels of stigma by association (mean difference = -1.45, 95% CI = -2.52 - -0.38, p = 0.008), and stigma and discrimination attitudes (mean difference = -3.84, 95% CI = -4.63 - -3.05, p < 0.001), compared to Usual care condition. In addition, caregivers of adolescents randomized to the G-CBT condition reported lower levels of stigma and discrimination attitudes at three months (mean difference = -5.18, 95% CI = -9.13 - -1.22, p = 0.010), and at six months (mean difference = -6.70, 95% CI = -9.28 - -4.12, p < 0.001). Caregiver mental health and parenting stress significantly reduced over time regardless of intervention condition. Findings point to the importance of incorporating stigma reduction components within psychosocial interventions targeting adolescents and families impacted by HIV.

Linking caregiving quality during infancy to brain activity in early childhood and later executive function.

There is no relationship more vital than the one a child shares with their primary caregivers early in development. Yet many children worldwide are raised in settings that lack the warmth, connection, and stimulation provided by a responsive primary caregiver. In this study, we used data from the Bucharest Early Intervention Project (BEIP), a longitudinal study of institutionally-reared and family-reared children, to test how caregiving quality during infancy is associated with average EEG power over the first 3.5 years of life in alpha, beta, and theta frequency bands, and associations with later executive function (EF) at age 8 years. The sample comprised 189 children (129 institutionally-reared; 60 family-reared) who contributed data on observed caregiving quality during infancy (baseline; average age of 22 months), resting EEG power at baseline, 30, and 42 months, and performance-based data on a series of EF tasks at 8 years. Using Bayesian estimation, observed caregiving quality at baseline was marginally linked with higher average alpha and beta power, and lower theta power, from baseline to 42 months. In turn, higher average beta power and lower average theta power were marginally associated with higher EF at 8 years. In indirect effects models, higher caregiving quality at baseline was associated with higher EF at 8 years, with a marginal indirect effect through average theta power from baseline to 42 months. Variation in the quality of the early caregiving environment may be associated with later executive function, which is partially underpinned by individual differences in brain activity during early childhood. RESEARCH HIGHLIGHTS: Examined associations between caregiving quality during infancy, brain activity during early childhood, and executive function during mid-childhood in sample of never-institutionalized and institutionally-reared children. Significant associations between higher quality caregiving during infancy and higher executive function during middle childhood. Marginal associations between caregiving quality during infancy and brain activity during early childhood. Marginal associations between brain activity during early childhood and executive function during mid-childhood.

A challenge to the expected: Lack of longitudinal associations between the early caregiving environment, executive functions in toddlerhood, and self-regulation at 6 years.

Previous research and theory indicate an importance of the quality of the early caregiving environment in the development of self-regulation. However, it is unclear how attachment security and maternal sensitivity, two related but distinct aspects of the early caregiving environment, may differentially predict self-regulation at school start and whether a distinction between hot and cool executive function is informative in characterizing such predictions through mediation. In a 5-year longitudinal study (n = 108), we examined these associations using measures of maternal sensitivity and attachment security at 10-12 months, executive function at 4 years, and self-regulation at 6 years. Surprisingly, and despite methodological rigor, we found few significant bivariate associations between the study variables. We found no credible evidence of a longitudinal association between maternal sensitivity or attachment security in infancy and self-regulation at 6 years, or between executive function at 4 years and self-regulation at 6 years. The lack of bivariate longitudinal associations precluded us from building mediation models as intended. We discuss our null findings in terms of their potential theoretical implications, as well as how measurement type, reliability, and validity, may play a key role in determining longitudinal associations between early caregiving factors and later self-regulation and related abilities. RESEARCH HIGHLIGHTS: The early caregiving environment has been implicated in the development of later self-regulation, which includes more basic skills, such as hot and cool executive functions (EF). In a 5-year longitudinal study, with a sample of 108 children, we rigorously measured aspects of early caregiving, EF, and self-regulation. We found no significant longitudinal associations between early caregiving and self-regulation at 6 years, nor between EF at 4 years and self-regulation at 6 years. These null results highlight the complexity of modeling self-regulation development and raise critical questions about general methodological conventions within self-regulation development research.

Caregiver burden and its predictors in adult epilepsy patients.

OBJECTIVE: The aim of this study was to evaluate caregiver burden and factors associated with caregiver burden in caregivers of adults with epilepsy. MATERIALS AND METHODS: This descriptive cross-sectional study was conducted with 107 patients with epilepsy and 107 their primary caregivers. Personal information form including sociodemographic data and Zarit Caregiver Burden Inventory (ZBI), were used for caregivers, and patient information form, Montreal Cognitive Assessment Scale (MoCA), Hospital Anxiety and Depression Scale (HADS), Epilepsy Quality of Life Scale (QoLIE-31) and Stigma Scale were used for patients. RESULTS: Caregiver burden was found to be related to gender (p = 0.047), marital status (p = 0.008), income (p = 0.003), education level (p = 0.05) age at onset of epilepsy (p = 0.025) and type of therapy (p = 0.005). The scale scores for cognitive functions (p < 0.001), stigma (p < 0.001), anxiety (p = 0.001), depression (p = 0.005), and quality of life (p < 0.001) of the patient showed significant correlations with caregiver burden. In addition, caregiver burden was found to correlate with some caregiver characteristics such as caregivers' age (p = 0.041), gender (p < 0.001), education (p < 0.001), income (p = 0.001) and relationship with the patient (p = 0.016). Time spent on caregiving per day was also positively correlated with caregiving burden (p < 0.001). In regression analysis, the gender of the caregiver, the gender of the patient, the stigma level of patient, and the type of treatment were found to be predictors of care burden (p < 0.05, R2 = 0.61). CONCLUSION: It was found that two-thirds of the families of patients with epilepsy experienced varying degrees of caregiver burden. In addition, it was determined that caregiver burden was associated with sociodemographic and numerous psychosocial factors of the patient as well as the caregiver. It is important that both the caregiver and the patient being cared for are closely evaluated in interventions to reduce the caregiver burden in patients with epilepsy.

Motivators for family carers of persons with dementia in Kenya.

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

"WOOP is my safe haven": A qualitative feasibility and acceptability study of the Wish Outcome Obstacle Plan (WOOP) intervention for spouses of people living with early-stage dementia.

OBJECTIVES: As symptoms emerge and worsen in people living with dementia, their spouses can benefit from behavioral interventions to support their adjustment as a care partner. The Wish Outcome Obstacle Plan (WOOP) intervention improves the well-being of spouses of people living with dementia early in the disease course, but intervention mechanisms and opportunities for improvement are unclear. The present study gave voice to spouses who participated in a trial of WOOP, describing how WOOP was incorporated into their lives and how it could be improved for future implementation. METHOD: For this qualitative study, we conducted longitudinal semi-structured interviews among 21 spouses of people living with dementia (three interviews over three months; 63 interviews total). Codebook thematic analysis was performed. RESULTS: Three meta-themes were derived: (1) assessing baseline strengths and limitations of WOOP, (2) learning from experience, and (3) fine-tuning and sustaining WOOP. Participants described how WOOP addressed their interpersonal and emotional stressors, their responses to behaviors of the person living with dementia, and their relationship quality. Considerations for future intervention delivery (e.g., solo vs. in group settings) and instructions (e.g., encouraging writing vs. thinking through the four steps of WOOP) were identified as areas of improvement. CONCLUSIONS: WOOP was described as a practical, feasible, and desirable intervention for spouses at the early stages of their partner's dementia. Participants made WOOP easier to incorporate in their everyday lives by adapting the design into a mental exercise that they used as needed. Suggestions from participants specified how to make the everyday use of WOOP more feasible, sustainable, and applicable in a variety of contexts. TRIAL REGISTRATION: ClinicalTrials.gov HIC 2000021852.

Mental health impacts of spousal caregiving intensity in the US.

In the US, spouses are a major source of informal care for older adults and, therefore, key to the US national strategy to provide long-term care to the growing population of older adults. Understanding the mental health impacts of spousal caregiving is therefore critically important. Existing studies on the topic have often been limited by methodological limitations, and most overlook the role of caregiving intensity. In this study, we assess the impact of providing different intensities of caregiving to a spouse on mental health outcomes using data from the Health and Retirement Study. We address the endogeneity of the decision to provide different caregiving intensities using an augmented inverse probability weighted (AIPW) estimator adapted to handle multivalued treatments. We check the robustness of our estimates to the AIPW's identifying assumptions by re-estimating the model using a dynamic fixed effects estimator. We find strong evidence that becoming a caregiver is associated with worsened mental health outcomes for women, while the evidence for men is weaker. When disaggregating by caregiving intensity, we find that transitions into high-intensity caregiving lead to large increases in depression symptoms and the probability of exhibiting major depression for both men and women. The overall mental health impact of transiting into caregiving is driven almost exclusively by the negative impact of high-intensity caregiving, as transitions into low- and moderate-intensity caregiving are not associated with worsening mental health in most specifications. This study provides timely insights that can inform the targeting of long-term care policies and programs aimed at supporting family caregivers of older adults.

Caregivers' demands: caring atmosphere expected by cancer patients' caregivers-a qualitative content analysis.

PURPOSE: Family caregivers play a critical role in providing care for patients with cancer. However, the quality of their caregiving can be greatly impacted if the demands and expectations they experience are not identified. Therefore, this study aimed to explore the demands and perceived expectations of caregivers while caring for cancer patients. METHODS: This qualitative study was conducted from June 2022 to September 2023. Face-to-face and in-depth semi-structured interviews were conducted to collect the experiences of 19 Iranian family caregivers of patients with cancer. Purposive sampling was used to select the participants. The interviews were analyzed using conventional content analysis and the rigor of the study was ensured by employing Lincoln and Guba's criteria. RESULTS: Three main themes and six subthemes were identified through data analysis. The themes that emerged from the caregivers' experiences included the following: (1) ambiguity in the healthcare system, (2) need for empathetic communication, and (3) forgotten caregivers in the healthcare system. CONCLUSION: Caregivers often feel overlooked, resulting in unfulfilled needs and expectations. It is imperative to explore potential solutions that provide caregivers information, empathetic communication, and support. Nurses, as key members of the healthcare team, should play a significant role in addressing this problem.

Loneliness, psychological distress, and the moderating effect of positive aspects of caregiving among cancer caregivers.

PURPOSE: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. METHODS: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. RESULTS: We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. CONCLUSION: The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.

The impact of a primary brain tumor diagnosis on caregivers: Insights from the patients' perspective.

PURPOSE: The diagnosis of a primary brain tumor (PBT) causes significant distress for the caregiver-patient dyad, warranting increased supportive care intervention. Although researchers have previously assessed caregivers' perceptions of their own supportive care needs, no study to date has identified how patients perceive the caregiving experience and/or patients' recommendations for integrating supportive care of caregivers in neuro-oncology. This qualitative study examined caregiver distress as well as caregiver supportive care needs from the patients' perspective to inform future intervention development. METHODS: Adults with PBT (N = 15; Mage = 45; 53% female; 93% White) were divided into four, 90-min focus groups moderated by a clinical neuropsychologist. Patients responded to semi-structured interview questions regarding various supportive care needs throughout the course of disease. Each discussion was transcribed and coded using thematic content analysis and NVivo software. Inter-rater reliability was excellent (MKappa = 0.92, range = 0.85-0.93). RESULTS: Seven distinct codes related to PBT caregivers emerged and were classified into two broader themes: Caregiver Impact (47% of coded content) and Caregiver Support (53% of coded content). Caregiver Impact refers to patients' perspective of the practical and emotional demands of caregiving. Under Caregiver Support, patients cited a strong need for increased support of caregivers, including bereavement care, individual psychotherapy, and joint caregiver-patient dyad sessions. CONCLUSION: Patients with PBT expressed profound concerns regarding the demands of caregiving and its impact on the well-being of their loved ones. Findings emphasize the need for comprehensive dyadic support in neuro-oncology throughout the disease trajectory to enhance the overall quality-of-life for both patients and their caregivers.

Assessing the association between quantity and quality of family caregiver participation in decision-making clinical encounters on patient activation in the metastatic breast cancer setting.

OBJECTIVE: Caregivers support individuals undergoing cancer treatment by assisting with activities, managing care, navigating healthcare systems, and communicating with care teams. We explored the quality and quantity of caregiver participation during recorded decision-making clinical appointments in women with metastatic breast cancer. METHODS: This was a convergent parallel mixed methods study that utilized qualitative and quantitative data collection and analysis. Caregiver participation quality was operationalized using a summative thematic content analysis to identify and sum caregiver actions performed during appointments. Performance of a greater number of actions was considered greater quality of participation. Caregiver participation quantity was measured by calculating the proportion of speaking time. Participation quality and quantity were compared to patient activation, assessed using the Patient Activation Measure 1-month post decision-making appointment. RESULTS: Fifty-three clinical encounters between patients with MBC, their caregivers, and oncologists were recorded. Identified caregiver actions included: General Support; Management of Treatment or Medication; Treatment History; Decision-Making; Insurance or Money; Pharmacy; Scheduling; Travel Concerns; General Cancer Understanding; Patient Specific Cancer Understanding; Caregiver-Initiated or Emphasis on Symptom Severity; and Caregiver Back-Up of Patient Symptom Description. Caregivers averaged 5 actions (SD 3): 48% of patient's caregivers had low quality (< 5 actions) and 52% had high quality (> 6 actions) participation. Regarding quantity, caregivers spoke on average for 4% of the encounter, with 60% of caregivers speaking less than 4% of the encounter (low quantity) and 40% of caregivers speaking more than 4% (high quantity). Greater quality and quantity of caregiver participation was associated with greater patient activation. CONCLUSIONS: Caregivers perform a variety of actions during oncological decision-making visits aiding both patient and provider. Greater participation in terms of quantity and quality by the caregiver was associated with greater patient activism, indicating a need for better integration of the caregiver in clinical decision-making environments.