Family Cancer Caregiver Use of and Benefit from an Internet-delivered Insomnia Intervention: Results from a Single-Group Feasibility Trial.

Background: Cancer caregivers are more likely to report clinically significant symptoms of insomnia than cancer patients and the general population, yet research has been limited regarding cognitive-behavioral therapy for insomnia (CBT-I) among this population. Methods: To better understand cancer caregivers' engagement with and benefit from CBT-I, cancer caregivers were enrolled in a nonrandomized pilot feasibility trial of an evidence-based Internet-delivered insomnia program. Thirteen caregivers completed mixed-methods assessments prior to receiving the insomnia program and after the nine-week intervention period. Results: Compared to the five caregivers who did not complete any intervention Cores, the eight caregivers who completed at least one of the intervention Cores tended to report more sleep impairment (insomnia symptom severity; minutes of sleep onset latency and wake after sleep onset), less physical and emotional strain from caregiving, and less maladaptive sleep beliefs at the baseline assessment. These caregivers who used the program also showed large improvements in their insomnia symptoms. Caregivers' qualitative feedback about their experience with the program identified potential areas that might be modified to improve caregivers' engagement with and benefit from Internet-delivered insomnia programs. Conclusions: Findings suggest that family cancer caregivers can use and benefit from a fully-automated Internet-delivered CBT-I program, even without caregiving-specific tailoring. Further rigorous research is needed to better understand whether and how program modifications may allow more caregivers to initiate and engage with this program.

Caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a psychiatric tertiary hospital in South Africa.

Background: Chronic mental illnesses such as schizophrenia affect patients' functioning, making caregiving necessary although burdensome. Aim: This study aimed to determine caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a Psychiatric Outpatient Department (POD). Setting: Tertiary hospital in Northern Pretoria, South Africa. Methods: In this cross-sectional study conducted over 3 months, 300 consecutive family caregivers who attended the POD were administered a 22-item Zarit Burden Interview (ZBI-22), which has a score of 0-88, with higher values indicating more burden. Their sociodemographic characteristics were ascertained. Linear and ordinal logistic regression analyses were performed to identify determinants or predictors of total and severe burdens, respectively. Results: Most caregivers were aged 46.0 ± 14 years, females (62%), parents (39%), of low-income status (93.7%), had secondary education (70%), resided with the patient (87%), and helped with all troublesome activities (95.3%). The median ZBI-22 score was 19.0 (interquartile range: 13.0-30.5). The determinants of both total and severe burdens were: caregiver age ≥ 50 years adjusted odds ratio (aOR): 2.55, confidence interval (CI): 1.49-4.36; residential area farther away from the hospital aOR: 1.76, CI: 1.3-2.99; increasing months of caregiving aOR: 1.0, CI: 1.001-1.009, p = 0.006; and not having another family member that needs care aOR: 0.43, CI: 0.24-0.78. Conclusion: Having mental healthcare facilities close to residential areas and assisting caregivers aged ≥ 50 years who have multiple family members who need care may alleviate the burden. Contribution: Predicting total and severe caregiver burdens contemporaneously is effective for identifying potential burden interventions.

Caregivers' Internet-Delivered Insomnia Intervention Engagement and Benefit: SHUTi-CARE Trial Primary Quantitative Analysis.

BACKGROUND: Delivering insomnia treatment by the Internet holds promise for increasing care access to family caregivers, but their ability to adhere to and benefit from such fully-automated programs has not been rigorously tested. PURPOSE: This fully-powered, single-group trial tested whether characteristics of the caregiving context influence high-intensity caregivers' engagement with and benefit from an empirically validated Internet intervention for insomnia. METHODS: At baseline, caregivers providing unpaid time- and responsibility-intensive care who reported insomnia (N = 100; age M = 52.82 [SD = 13.10], 75% non-Hispanic white, 66% ≥college degree) completed questionnaires about caregiving context and sleep, then 10 prospectively-collected online daily sleep diaries. Caregivers then received access to SHUTi (Sleep Healthy Using the Internet), which has no caregiver-specific content, for 9 weeks, followed by post-assessment (questionnaires, diaries). Engagement was tracked by the SHUTi delivery system. RESULTS: Sixty caregivers completed SHUTi, 22 initiated but did not complete SHUTi, and 18 did not initiate SHUTi. Caregivers were more likely to use SHUTi (than not use SHUTi) when their care recipient (CR) had worse functioning, and were more likely to complete SHUTi when supporting more CR activities of daily living (ADL; ps < .03). Higher caregiver guilt, more CR problem behaviors, and being bedpartners with the CR related to more improved sleep outcomes, whereas supporting more CR instrumental ADL related to less improvement (ps < .05). CONCLUSIONS: Factors associated with greater caregiving burden, including greater CR impairment and caregiving guilt, were generally associated with better engagement and outcomes. Caregivers with substantial burdens can adhere to and benefit from a fully automated insomnia program without caregiver-specific tailoring.

This study examined how family caregivers, who often have trouble sleeping due to their responsibilities, used an online insomnia treatment program. The goal was to determine if certain aspects of caregiving would influence how caregivers engage with or benefit from the program. Researchers surveyed 100 caregivers with insomnia about their caregiving situation and sleep, and caregivers also kept online sleep diaries for 10 days. Afterward, caregivers used an online insomnia program with no caregiver-specific content called Sleep Healthy Using the Internet (SHUTi) for 9 weeks. Caregivers' usage was monitored, and they repeated measures of sleep outcomes and 10 online sleep diaries. Sixty caregivers completed SHUTi, 22 partially completed the program, and 18 did not initiate the program. Caregivers who cared for individuals with more severe functional limitations were more likely to use and complete SHUTi. Additionally, caregivers experiencing more guilt and those who managed more challenging behaviors from the person they cared for tended to report greater improvements in their sleep. This study suggests that caregivers, even those with significant care responsibilities, can use and benefit from an online insomnia treatment program like SHUTi, even when it has not been specifically tailored for caregivers.

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

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

This study examined family caregivers' experiences using an online cognitive-behavioral therapy for insomnia program. The aim was to determine if the program needed changes to better fit caregivers' needs. Researchers gave 100 caregivers with insomnia access to Sleep Healthy Using the Internet (SHUTi), an online insomnia program that had no caregiver-specific tailoring. Of the 82 caregivers who used the program, most found the program easy to use and helpful, although some struggled with behavioral strategies because of their unpredictable caregiving duties. There was no clear consensus among caregivers on whether tailoring would be helpful. The 18 caregivers who did not use the program most commonly said that they did not have enough time to use the program or that they felt it would not work well with their lifestyle. Overall, findings suggest that providing interventions via the Internet is a good fit for many caregivers. Many caregivers benefitted from an online insomnia program without being tailored specifically for caregivers, although some additional guidance on how to follow behavioral strategies may be helpful to some caregivers.

Cyclophosphamide exposure factors in family caregivers for pediatric cancer patients.

The exposure of family caregivers to anticancer drugs for pediatric patients with malignancy is a potential health risk that needs to be minimized. We monitored the amount of cyclophosphamide (CPM) that had adhered to the undershirts of patients and the personal protective equipment (PPE) of family caregivers as well as the caregivers' urine levels of CPM within the first three days after the first and second courses of high-dose CPM therapy. Liquid chromatography/mass spectrometry (LC/MS/MS) detected >0.03 ng/ml of CPM in 26% (23/88) of urine samples from 8 of 11 (72.7%) patients' family caregivers, with a peak of 0.7 ng/ml from 24 to 48 h after administration. Since urine CPM concentrations in family caregivers varied after the first and second courses, the exposure risk factors were analyzed by scoring the PPE-wearing time index (caring minutes × PPE points from wearing masks, gloves, and/or gowns) and CPM adhesion of PPE items with the caring patterns of diaper change, washing body care, oral care, eating assistance, emotional support, and co-sleeping. The closest association was observed for CPM adhesion between oral care gloves and undershirts (correlation coefficient 0.67, p = 0.001). The mixed-effect model analysis indicated only a significant correlation between the PPE-wearing time index and emotional care (playing, cuddling, and physical contact) (p = 0.016). These results suggest that prolonged emotional support results in poor PPE protection, which increases the risk of exposure in family caregivers. Strict PPE care within 48 h after high-dose CPM controls the exposure to high-risk anticancer drugs in caregivers of pediatric patients.

Psychosocial Intervention for Family Caregivers of ALS Patients: A Systematic Review.

PROPOSAL: This systematic review aims to comprehensively examine all existing knowledge on psychosocial interventions for family caregivers for ALS patients. Also, the study will present the gaps in knowledge, recommendations for future research, and guidelines for psychosocial interventions that are focused and adapted to the needs of family caregivers of ALS patients. MATERIALS AND METHODS: The systematic review was conducted according to the PRISMA guidelines and identified studies on psychosocial intervention for family caregivers of ALS patients, using five electronic databases: PsychNET, PubMed, EBSCO, PRIMO, and PROQUEST. Seven articles met the criteria and were included in the review. A thematic analysis was conducted to extract major themes. RESULTS: Three major themes emerged from the data: (1) Personal benefits; (2) Interpersonal benefits; and (3) Charting challenges and pathways to improve psychosocial interventions. CONCLUSIONS: Based on the findings, practical guidelines were formulated that focus on the group's composition, the facilitator's role, the contents, the relationships within the group, and the opportunities and limitations of online interventions.

What Self-Management Skills Do Turkish Caregivers Have in Caring for People with Dementia? Results of a Qualitative Survey.

Family caregivers can be overwhelmed by the care they provide within the family without external support. The development of self-management skills and the associated ability to actively and responsibly manage one's own health or illness situation therefore plays a vital role in the home care of people living with dementia. As part of an individualized intervention for family caregivers of people of Turkish origin with dementia, existing self-management skills were examined through qualitative interviews to gain insight into health literacy and empowerment in caregiving and in interviewees' own practices to maintain their health. Ten caregivers of Turkish origin who were responsible for family members living with dementia were interviewed using problem-centered interviews. We found that the target group has very heterogeneous self-management competencies, which are based, on the one hand, on existing supportive resources and, on the other hand, on diverse care-specific, psychosocial and life-world challenges in intrafamily care that have not been overcome. Self-management skills in family caregivers are influenced by a complex interplay of both available resources that support these skills and challenging caregiving situations. This dynamic combination of resources and challenges results in varying levels of self-management ability among family caregivers. Strengthening resources can help caregivers to meet the challenges resulting from caregiving and to expand their self-management competencies. There is great need for action in promoting self-management skills among Turkish caregivers of people living with dementia in home care. Interventions to promote self-management skills must take into account the individual resources of those affected as well as their social and cultural diversity.

Needs analysis of family caregivers of people living with dementia in Sleman Regency, Yogyakarta.

BACKGROUND: Without appropriate support, taking care of people living with dementia may become a burden for family caregivers. Identifying the needs for caregivers can help them minimise the burden of caring and meet quality care for people living with dementia. METHODS: In the first phase, a content validity test was conducted on the Carers' Needs Assessment of Dementia (CNA-D) in the Indonesian version. The second phase, a sequential explanatory mixed-methods design, was conducted on 65 family caregivers in two stages. The first stage was a cross-sectional study. A correlation test between caregiver problems and caregiver burden was conducted. The caregiver problems that were statistically significant were analyzed to reveal the unmet needs. A needs analysis was also conducted on problems experienced by more than half of the caregivers. In the second stage, we conducted a semi-structured individual interview, and thematic analysis was used to analyze the data. RESULTS: The result of the validity test of the CNA-D instrument, Indonesian version, obtained a high value for content validity. The main problem of caregivers is a lack of information about dementia; however, it does not have a significant correlation with caregiver burden. The caregiver problem with the highest correlation to caregiver burden is burnout due to caring. More than 50% of caregivers' needs in Sleman Regency were not met in this research. The most essential needs that were not met were counselling and psychotherapy (83.3%-92%). The personal understanding of dementia, spiritual values in caring, cultural values in caring, barriers to accessing healthcare services, and self-care strategies should be considered in fulfilling family caregiver needs. CONCLUSION: Most of the needs of family caregivers of people living with dementia in Sleman Regency, Yogyakarta, have not been met. Therefore, it requires collaboration with multi-professionals and all stakeholders to fulfil these needs.

Family Support of Older Caregivers: Factors Influencing Change in Quality of Life.

Understanding factors that can improve the quality of life (QOL) of older caregivers of people with intellectual and developmental disabilities (IDD) is important in broadening participation in family empowerment interventions. The purpose of this study was to identify the factors influencing the QOL of older caregivers (50+) of adults with IDD who participated in a peer-mediated state-wide family support project. The research study used a quasi-experimental research design grounded in the family quality of life (FQOL) framework, with pretest and posttest data gathered from 82 caregivers. Correlation and regression analyses were conducted to identify factors influencing changes in the QOL of study participants. Findings indicated that improvements in caregiver QOL after participating in the project could be explained by caregiver's employment status, increased global FQOL, and decreased caregiver stress and depression.

Family members' conceptions of their supportive care needs across the colorectal cancer trajectory - A phenomenographic study.

AIM: To describe the variations of family members' conceptions of their supportive care needs (SCN) across the colorectal cancer (CRC) trajectory. DESIGN: A descriptive qualitative study with a phenomenographic approach. METHOD: Individual semi-structured interviews were conducted from May 2022 to October 2022 with 23 family members of persons diagnosed with colorectal cancer. The interviews were analysed using phenomenographic analysis following the Consolidated criteria for reporting qualitative research (COREQ) checklist. RESULTS: The phenomenographic analysis resulted in five categories. Not of importance describes family members' needs as unimportant due to the good prognosis and the organization of care and in relation to the needs of others. Only satisfiable by professionals describes information possessed by the healthcare professionals as key, as well as the need for professional counselling for the family members to process their emotions. Managed by themselves describes family members preferring to manage their SCN themselves by turning to the appropriate social support and/or by using coping skills. Understood retrospectively describes SCN as only understandable when things have calmed down and as requiring one's own experience to understand. Left unmet describes SCN as unnoticed by the healthcare professionals or not brought to light by the family members, or family members not knowing where to turn for support. CONCLUSION: Supportive care should involve individualized information, proactive and repeated assessments of needs across the trajectory, as well as encouragement of family members to reflect on their needs and to accept support when needed. IMPACT: There is a gap in the literature regarding family members' SCN across the CRC trajectory which this study addresses. Findings show five categories of family members' conceptions of their SCN. Those findings could serve as a basis for the development of clinical colorectal supportive care across the cancer trajectory. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Findings show that to offer family members of persons diagnosed with colorectal cancer support only at the time of diagnosis is insufficient. Instead, the healthcare team is recommended to proactively and repeatedly try to identify those in need and the characteristics of their needs. In addition, it is important to offer individualized information and strive to encourage family members to reflect on their situation and to not suppress their own needs if emerging. REPORTING METHOD: Reporting adheres to the consolidated criteria for reporting qualitative research (COREQ) checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Paid Leave Mandates and Care for Older Parents.

Policy Points We examined the effect of the Paid Family Leave policy (PFL) and Paid Sick Leave policy (PSL) on care provision to older parents. We found that PSL adoption led to an increase in care provision, an effect mainly attributable to respondents in states/periods when PSL and PFL were concurrently offered. Some of the strongest effects were found among women and unpartnered adult children. PFL adoption by itself was not associated with care provision to parents except when PFL also offered job protection. Paid leave policies have heterogeneous effects on eldercare and their design and implementation should be carefully considered. CONTEXT: Family caregivers play a critical role in the American long-term care system. However, care responsibilities are known to potentially conflict with paid work, as about half of family caregivers are employed. The federal Family and Medical Leave Act passed by the US Congress in 1993 provides a nonuniversal, unpaid work benefit. In response, several states and localities have adopted the Paid Family Leave policy (PFL) and Paid Sick Leave policy (PSL) over the last two decades. Our objective is to examine the effect of these policies on the probability of personal care provision to older parents. METHODS: This study used longitudinal data from the Health and Retirement Study (1998-2020). Difference-in-differences regression models were estimated to examine associations between state- and local-level PFL and PSL mandates and personal care provision to older parents. We analyzed heterogeneous effects by the type of paid leave exposure (provision of job protection with PFL and availability of both PSL and PFL [with or without job protection] concurrently). We also examined results for different population subgroups. FINDINGS: PSL implementation was associated with a four- to five-percentage point increase in the probability of personal care provision. These effects were mainly attributable to respondents in states/periods when PSL and PFL were concurrently offered. The strongest effects were found among adult children who were employed at baseline, women, younger, unpartnered, and college educated. PFL implementation by itself was not associated with care provision to parents except when the policy also offered job protection. CONCLUSIONS: Paid leave policies have heterogeneous impacts on personal care provision, potentially owing to differences in program features, variation in caregiving needs, and respondent characteristics. Overall, the results indicate that offering paid sick leave and paid family leave, when combined with job protection, could support potential family caregivers.

Experiences of family caregivers taking care getting lost of persons with dementia: a qualitative study.

BACKGROUND: Getting lost with family members who have dementia is a significant source of stress for family caregivers. In Taiwan, family caregivers develop strategies to deal with dementia persons who may get lost. This study aimed to explore the experiences of family caregivers caring for persons with dementia who have been lost outside the home. METHODS: A descriptive phenomenological method was used. The COREQ checklist was used to ensure the explicit reporting of data. A total of 20 family caregivers caring for persons with dementia who were lost outside their homes were selected from hospital outpatient clinics and a day care center in northern Taiwan using purposive sampling. Data were analyzed using the Giorgi analysis method. RESULTS: Five main themes emerged: (i) surprised persons with dementia lost outside, (ii) using strategies to prevent persons with dementia from getting lost, (iii) using strategies to find lost persons with dementia, (iv) exhaustion in long-term care persons with dementia, and (v) coping with the care load. It was found that family caregivers were surprised, nervous, and worried about persons with dementia being lost outside. They used the first strategy to supervise persons with dementia to prevent external losses. In addition, long-term supervision of persons with dementia led to mental exhaustion in the family caregivers. Finally, the family caregivers learned about loss prevention strategies and obtained family support and care replacement workers to reduce the care burden. CONCLUSIONS: It is essential to teach family caregivers early to prevent persons with dementia from losing external strategies. Nurses also provide long-term care services to reduce the care burden on family caregivers.

Effects of dyadic care interventions for heart failure on patients' and caregivers' outcomes: A systematic review, meta-analysis and meta-regression.

BACKGROUND: The contemporary model for managing heart failure has been extended to a patient-family caregiver dyadic context. However, the key characteristics of the model that can optimise health outcomes for both patients and caregivers remain to be investigated. OBJECTIVES: This study aimed to identify the effects of dyadic care interventions on the behavioural, health, and health-service utilisation outcomes of patients with heart failure and their family caregivers and to explore how the intervention design characteristics influence these outcomes. DESIGN: This study involved systematic review, meta-analysis, and meta-regression techniques. METHODS: We performed a systematic review and meta-analysis, using 12 databases to identify randomised controlled trials or quasi-experimental studies published in English or Chinese between database inception and 31 December 2022. The considered interventions included those targeting patients with heart failure and their family caregivers to enhance disease management. Data synthesis was performed on various patient- and caregiver-related outcomes. The identified interventions were categorised according to their design characteristics for subgroup analysis. Meta-regression was performed to explore the relationship between care delivery methods and their effectiveness. RESULTS: We identified 48 studies representing 9171 patient-caregiver dyads. Meta-analyses suggested the positive effects of dyadic care interventions on patients' health outcomes [Hedges' g (95 % confidence interval {CI}): heart failure knowledge = 1.0 (0.26, 1.75), p = 0.008; self-care confidence = 0.45 (0.08, 0.83), p = 0.02; self-care maintenance = 1.12 (0.55, 1.70), p < 0.001; self-care management = 1.01 (0.54, 1.49), p < 0.001; anxiety = -0.18 (-0.34, -0.02), p = 0.03; health-related quality of life = 0.30 (0.08, 0.51), p < 0.001; hospital admission (risk ratio {95 % CI}: hospital admission = 0.79 (0.65, 0.97), p = 0.007; and mortality = 0.58 (0.36, 0.93), p = 0.02)]. Dyadic care interventions also improved the caregivers' outcomes [Hedges' g (95 % CI): social support = 0.67 (0.01, 1.32), p = 0.05; perceived burden = -1.43 (-2.27, -0.59), p < 0.001]. Although the design of the identified care interventions was heterogeneous, the core care components included enabling and motivational strategies to improve self-care, measures to promote collaborative coping within the care dyads, and nurse-caregiver collaborative practice. Incorporating the first two core components appeared to enhance the behavioural and health outcomes of the patients, and the addition of the last component reduced readmission. Interventions that engaged both patients and caregivers in care provision, offered access to nurses, and optimised continuity of care led to better patient outcomes. CONCLUSIONS: These findings demonstrate that dyadic care interventions can effectively improve disease management in a family context, resulting in better health outcomes for both patients and caregivers. Additionally, this study provides important insights into the more-effective design characteristics of these interventions. REGISTRATION NUMBER: The review protocol was registered in the PROSPERO International Prospective Register of Systematic Reviews (CRD42022322492).

Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care.

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners (N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners' preparedness for the visit and opening a direct channel to express concerns about patients' cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes' and potential for future implementation and dissemination.

The Importance of Providing Training to Informal Caregivers of Hospice Patients: Caregiver Experience With Hospice Care Based on Consumer Assessment of Healthcare Providers & Systems Surveys.

BACKGROUND: Informal caregivers aid hospice patients at the end of life. Little is known of their preparation and confidence in providing care, and how this relates to experiences of hospice care. OBJECTIVE: Examine factors associated with informal caregivers' rating of home hospice care. METHODS: Data come from 828 completed CAHPS® surveys mailed between January 2022 and December 2023 from a single non-profit Hospice organization. Multivariate logistic regression analyses examined the independent influence of various aspects of hospice care on ratings of hospice. RESULTS: Nine of every 10 respondents rated hospice care high (9 or 10). Most aspects of hospice care were rated favorably. Nearly all respondents felt the patient was treated with dignity and respect (96%). The measure with the greatest room for improvement was getting help as soon as needed (82% "always"). Multivariate analyses revealed 6 factors that independently predicted overall rating of hospice care. The strongest predictor was always getting help as soon as needed, followed by believing the hospice team cared about the patient. Three measures of caregiver training were significantly associated with higher ratings of hospice care being trained to: safely move the patient, what to do if patient became restless, and on pain medications. CONCLUSIONS: When informal caregivers feel trained to assess and manage the symptoms, they rate hospice care more favorably. Greater attention to informal caregiver training and support are imperative to improving hospice care.

Gender Differences in Family Caregiving. Do female caregivers do more or undertake different tasks?

BACKGROUND: Two out of three family caregivers are female. However, current trends show that men are more likely to undertake caregiving duties, yet female caregivers report a higher burden. This paper analyzed data from long-term family caregivers to determine whether, under similar circumstances, gender differences in caregiving persist. We examined whether the observed gender gap affects caregivers' satisfaction with their health and quality of life. METHODS: We analyze cross-sectional data from family caregivers of persons with spinal cord injury (SCI) in Switzerland. The data provides comprehensive information about the time and type of weekly tasks family caregivers undertake. To determine differences in caregiving related to gender, we balanced the characteristics of the caregiver and the cared-for person using a propensity score kernel matching. With the balanced sample, we estimated how the observed differences in caregiving varied across cohorts using a Poisson regression. RESULTS: Under similar circumstances, male and female caregivers invest similar time in caregiving. This result holds for 21 caregiving tasks, except for household chores, where women spent, on average, four more hours per week than male caregivers. Despite these differences, female caregivers report a quality of life and satisfaction with their health that is similar to that of male caregivers. CONCLUSION: Gender differences in caregiving narrow over time, except for household chores, where female caregivers continue to spend significantly more hours than male caregivers. Measures designed for family caregivers must consider these gender differences, as the support needs of female caregivers can differ greatly from those of male caregivers.

Perception of diagnosis by family caregivers in severe brain injury patients in China.

OBJECTIVES: Surrogate decision-making by family caregivers for patients with severe brain injury is influenced by the availability and understanding of relevant information and expectations for future rehabilitation. We aimed to compare the consistency of family caregivers' perceptions with clinical diagnoses and to inform their expectation of prognosis in the future. METHODS: The Coma Recovery Scale-Revised was used to assess the diagnosis of inpatients with severe brain injury between February 2019 and February 2020. A main family caregiver was included per patient. The family caregiver's perception of the patient's consciousness and expectations of future recovery were collected through questionnaires and compared consistently with the clinical diagnosis. RESULTS: The final sample included 101 main family caregivers of patients (57 UWS, unresponsive wakefulness syndrome, 37 MCS, minimally conscious state, 7 EMCS, emergence from MCS) with severe brain injury. Only 57 family caregivers correctly assessed the level of consciousness as indicated by the CRS-R, showing weak consistency (Kappa = 0.217, P = 0.002). Family caregivers' demographic characteristics and CRS-R diagnosis influenced the consistency between perception and clinical diagnosis. Family caregivers who provided hands-on care to patients showed higher levels of consistent perception (AOR = 12.24, 95% CI = 2.06-73.00, P = 0.006). Compared to UWS, the family caregivers of MCS patients were more likely to have a correct perception (OR = 7.68, 95% CI = 1.34-44.06). Family caregivers had positive expectations for patients' recovery in terms of both communication and returning to normal life. CONCLUSION: Nearly half of family caregivers have inadequate understanding of their relative's level of consciousness, and most of them report overly optimistic expectations that do not align with clinical diagnosis. Providing more medical information to family caregivers to support their surrogate decision-making process is essential.

Care for the cerebrovascular accident survivors: experiences of family caregivers.

BACKGROUND: The role of family caregivers in the management of cerebrovascular accident survivors is invaluable. So far, there is a strong evidence affirming the effectiveness of family support for cerebrovascular accident survivors. Meanwhile, caring for cerebrovascular survivors can be labour and time intensive and pretty stressful for caregivers. The purpose of the study was to examine the lived experiences of family caregivers of cerebrovascular accident survivors in the Ho Municipality in the Volta Region of Ghana. This aims are to establish their caregivers' knowledge, preparedness, and impact of caregiving on the caregiver, and coping strategies caregivers adopted. METHODS: Using a four-item (with 14 prompts) interview guide and descriptive phenomenological approach, we gathered and analysed data from 37 family caregivers in the Ho Municipality of Ghana. RESULTS: We found that caregivers had limited knowledge about cerebrovascular disease-risk factors and were ill-prepared for their caregiving roles. Additionally, we found limited knowledge about coping strategies among the caregivers. We further report that some caregivers lost close relationships, and their jobs because of the caregiving, they also used fasting and prayer as coping strategies. CONCLUSIONS: Caregivers suffered broken relationship, loss their jobs and incomes due to their caregiving roles. Moreover, some engaged in fasting and prayers, and alcohol use to cope with the stress associated with caring for the cerebrovascular accident survivors. We discussed the potential implications of our findings on the realisation of the Sustainable Development Goal 3.4. The aim of this goal is to reduce by 75% premature deaths due to cerebrovascular and other non-communicable diseases by 2030.

A qualitative study on psycho-social needs of the family caregivers of persons with spinal cord injury.

Background: Spinal cord injury is a high-cost long-lasting disability and a life-changing experience for family caregivers (FCGs). The current study aimed to explore the psycho-social needs of the FCGs of persons with spinal cord injury (PwSCI). Materials and Methods: An exploratory qualitative approach was used, and sixteen FCGs of PwSCI participated in the face-to-face interviews. All the interviews were audio-recorded, and session notes were added to the existing data and later transcribed. Thematic analysis was used to identify the main themes. Results: Three main themes have emerged, namely, awareness needs, resource needs, and personal care needs, from the data as a result of the qualitative analysis: The main themes have been categorised into nine sub-themes, such as want to know, alternative ways of contacting, the helpful or conducive environment of arrangements, sources to get money, pension certificate needs, resources for livelihood, resources for continuing the treatment, need my own time, and controlling of feelings. Conclusion: The findings of this research aid in designing or developing need-based tailor-made psychosocial interventions for the FCGs of PwSCI in India. Multidisciplinary team professionals involved in managing spinal cord injury and other stakeholders should understand the importance of meeting the mentioned psycho-social needs of FCGs of PwSCI and delivering such tailor-made psycho-social interventions in a timely.

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.