The Psychological Symptoms and Their Relationship to the Quality of Life Among Dementia Patients Caregivers.

The study aims to identify psychological symptoms (depression and anxiety) and their relationship to the quality of life among dementia patients' caregivers, and whether there are differences in the level of each of them due to the gender variable. The study follows the correlational approach, with a sample of 174 dementia patients' caregivers. To pursue the analysis, the study uses 3 measurement tools: anxiety, depression, and quality of life. The results show that the level of depression, anxiety, and quality of life among dementia patients' caregivers is moderate. It also finds that there is a positive relationship between anxiety and depression, and there is a negative relationship between quality of life and anxiety and depression. There are no differences in the level of depression and anxiety due to gender, as the study finds female caregivers to have a higher level of quality of life.

"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

Exploring the knowledge and skills for effective family caregiving in elderly home care: a qualitative study.

BACKGROUND: Family caregivers play a crucial role in providing physical, emotional, and social support to the elderly, allowing them to maintain their independence and stay in their preferred living environment. However, family caregivers face numerous challenges and require specific knowledge and skills to provide effective care. Therefore, understanding the knowledge and skills required for effective family caregiving in elderly home care is vital to support both the caregivers and the elderly recipients. METHODS: The research was carried out in Mekelle City, Ethiopia, utilizing the phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted. Individuals with experience in providing care for elderly people in their homes were targeted. Data was gathered through the use of an open-ended guide, transcribed word-for-word, inputted into ATLAS.ti8 software, and translated. Codes and themes were then extracted from the transcribed data, and a thematic analysis was performed. To minimize personal biases, the collected data were coded independently by the data collection assistants and the PI. The analysis was carried out by authors who were not involved in the data collection process. The interviews were conducted in a quiet place. RESULTS: A total of 22 in-depth interviews were conducted as part of this research. The results indicated that although the participants had knowledge about common health problems experienced by older people, they were uninformed about how to manage these conditions at home and were unaware of specialized healthcare resources for the elderly. Furthermore, they had limited knowledge about suitable exercise routines, strategies to prevent falls, and home healthcare practices for older individuals. On the other hand, they exhibited a solid comprehension and awareness of abusive behaviors specifically directed at older adults. CONCLUSION: The results emphasized the importance of enhancing education and training for family caregivers in handling elderly health issues, raising awareness about specialized healthcare services catered to the elderly, improving understanding of activities of daily living (ADLs) and fall prevention, and offering inclusive training in healthcare tasks related to elder care. RECOMMENDATION: Participants should receive comprehensive education and training programs to enhance their knowledge and skills in managing these conditions. Efforts should also be made to raise awareness about the availability of geriatric hospitals or specialized nurses for the elderly. Participants need to be educated about suitable exercise routines for the elderly and fall prevention strategies. Healthcare skills training is also necessary for participants, focusing on activities such as wound dressing, vital sign monitoring, and establishing a specific schedule for changing positions.

Cognition and health-related quality of life in long-term survivors of high-grade glioma: an interactive perspective from patient and caregiver.

BACKGROUND: The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden. METHODS: 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers. RESULTS: Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients' general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits. CONCLUSIONS: In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.

Caregiver and parent-child relationship during COVID-19: The mediator role of anxiety and life satisfaction.

AIM: This research was conducted to evaluate the mediation effect of anxiety and life satisfaction on the relationship between Care burden and Parent Child Relationship in Turkish parents during the COVID-19 epidemic. METHODS: The research was carried out with parents (221 women and 219 men) who have children between the ages of 6-18 living in Turkey. Data were collected in June-July 2021 using the demographic data form, "Care Burden Scale," "Pervasive Anxiety Disorder-7 Test," "Satisfaction with Life Scale," and "Parent Child Relationship Scale." Path analysis was used to analyse the relationships. In this study, structural equation modelling (SEM) was used to examine the path analysis. RESULTS: It was found that the burden of care and anxiety of the parents and the parent-child conflict relationship were positively correlated and negatively correlated with the life satisfaction and parent-child closeness relationship (p < 0.05). Path model analyses revealed that the burden of care had a direct effect on anxiety and life satisfaction, and an indirect effect on the parent-child relationship, respectively. CONCLUSIONS: It shows that parents' perceptions of how the COVID-19 pandemic is affecting their mental health have implications for parent and child well-being, with stronger relationships for low-income families. Anxiety and life satisfaction had a mediating effect between care burden and parent-child relationship. Given the demonstrable impact of COVID-19 on the parent-child relationship, this study may guide the planning of coping strategies and programmes focused on mental health.

[Therapies, bonds and quality of life of children and adolescents with cerebral palsy: experiences and perceptions of their caregivers during the pandemic]. / Terapias, vínculos y calidad de vida de niños, niñas y adolescentes con parálisis cerebral: vivencias y percepciones de sus cuidadores durante la pandemia.

The COVID-19 pandemic affected the health of children and adolescents (CA). Isolation-related conditions could have impacted not only the functionality of children and adolescents with cerebral palsy (CP) but also their social and emotional well-being, affecting their health-related quality of life (HRQoL). OBJECTIVE: To analyze perceptions of impairment during the pandemic and differences in HRQoL dimensions compared with a previous registry in Argentinean children and adolescents diagnosed with CP from the perspective of their caregivers. SUBJECTS AND METHOD: Cross-sectional observational study at two time points (2019 and 2021) where 98 caregivers participated. We used the KIDSCREEN-27 and CP-QOL questionnaires for the assessment of HRQoL and an open-ended question regarding the impact of the pandemic on the health of children and adolescents, including in 2021. We compared mean scores of the dimensions of the questionnaires in both stages (significant differences: Cohen's d≥0.3). Responses to the open-ended question were analyzed via "open" and "axial" coding. RESULTS: The scores of the dimensions Participation, Emotional well-being, Social well-being, and School environment (CP-QOL) and Psychological well-being, Friends, School environment, and General HRQoL index (KIDSCREEN-27) were lower during the pandemic (2021) compared with 2019 (d>0.3). Regarding perceived affectation during the pandemic, we identified three main recurrences: "impairment due to interruption of therapies and treatments", "deterioration of peer bonding", and "increased and positive appraisal of self-care". CONCLUSIONS: The pandemic affected the psychosocial dimensions of health. Qualitative data highlight the positive assessment of self-care.

Caring burden and coping with haemodialysis: a qualitative study with family caregivers in Sri Lanka.

OBJECTIVE: The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context. DESIGN: Qualitative study with an exploratory design. SETTING: Family caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021. PARTICIPANTS: A purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis. RESULTS: The results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support. CONCLUSION: The results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained settings.

Depressive symptoms, parenting attitude, and violent discipline among caregivers of left-behind children in rural China: a cross-sectional study.

BACKGROUND: The situation of mental health and discipline behaviors of left-behind children's caregivers were not optimistic in rural China. Caregivers' depression might increase the risk of using violent discipline. However, the specific ways in which depressive symptoms impact violent discipline have rarely been explored in rural areas. This study aims to assess the prevalence of violent discipline among left-behind children under 6 years of age in rural China and explore the potential mechanisms of how caregivers' depressive symptoms affect violent discipline. METHODS: We enrolled a total of 396 pairs of left-behind children and their caregivers in our study, which was conducted in 5 counties of Hebei, Henan, Jiangxi, Guizhou, and Sichuan provinces in China. The depressive symptoms of caregivers were measured by using Zung Self-rating Depression Scale (ZSDS) and violent discipline was assessed by the Child Discipline Module of Multiple Indicator Cluster Surveys (MICS). A self-designed questionnaire was utilized to measure caregiver's parenting attitude. Based on the cross-sectional data, controlling for potential confounders, structural equation modeling (SEM) was used to assess the direct and indirect effects of the mediation models by applying the weighted least squares with mean and variance adjusted (WLSMV) estimate. RESULTS: The prevalence of violent discipline, psychological aggression, and physical punishment was 72.7%, 59.3%, and 60.4% respectively of left-behind children under 6 years of age. According to the results of SEM, parenting attitude acted as a suppressor, suppressing the association between caregivers' depressive symptoms and physical punishment/psychological aggression/violent discipline. The caregivers' depressive symptoms positively influenced all the outcome variables by affecting parenting attitudes (p = 0.002, p = 0.013, p = 0.002). CONCLUSIONS: The presence of depressive symptoms in caregivers increases the use of violent discipline through negative parenting attitudes. The mental health status of primary caregivers of left-behind children in rural China needed emphasis and improvement.

Caregiving experiences of family caregivers of patients with schizophrenia in a community: a qualitative study in Beijing.

OBJECTIVES: This study aims to understand the caregiving experiences of family caregivers of people with schizophrenia in a community. DESIGN: A qualitative study based on phenomenological analysis was conducted through in-depth interviews. SETTING: This study was carried out from May to June 2023 in two community health service centres in urban Beijing, China. PARTICIPANTS: We selected 16 family caregivers for interviews using purposive sampling method. RESULTS: Four themes and 10 subthemes were identified: (1) psychosocial distress of family caregivers (feeling unprepared and helpless at the beginning, confronting negative emotions in long-term care and straying away from social life); (2) adverse impacts on the whole family (poor cooperation within the family, insufficient family involvement in professional care); (3) coping with family caregiving (accepting the reality of the patients' illness, struggling with family life balance and having realistic expectations); (4) concerns about future care (daily living support, physical health management). CONCLUSION: Family caregivers experienced psychosocial distress and family stress in the process of caregiving. They had to cope with caregiving stress and were concerned about the long-term care of people with schizophrenia. These findings provide implications for intervention programmes to strengthen social support, family involvement, and active coping for caregivers and develop long-term care mechanisms for people with schizophrenia.

Sobrecarga, afrontamiento y soporte social en progenitores de niños con cáncer / Caregiver burden, coping and social support in parents of children with cancer

Objetivo: Analizar la relación entre las estrategias de afrontamiento, el soporte social, las características de padres cuidadores migrantes y sus niños con cáncer en la sobrecarga del cuidador de dichos padres. Método: Participaron 82 cuidadores (67 madres y 15 padres) en condición de bajo recursos que residían en albergues para niños con cáncer y sus cuidadores, quienes migraron a la ciudad para recibir el tratamiento. Se utilizó la Escala de Sobrecarga de Zarit (Zarit et al., 1980), el Inventario de Afrontamiento COPE (Carver et al., 1989) y el Cuestionario MOS de apoyo social (Sherbourne y Stewart, 1991). Resultado: Se realizaron dos modelos de regresión para evaluar el impacto de las variables demográficas y psicológicas en la carga del cuidador, el primer modelo involucra la escala global de apoyo social (R2 ajustado=,43, F=9,73, p<,001) y el segundo las escalas específicas (R2 ajustado=,45, F=8,23, p<,001). Los resultados evidencian el rol predictivo de las estrategias de afrontamiento como la aceptación, la reinterpretación positiva y enfocar y liberar emociones; el soporte social global y de tipo afectivo; y características sociodemográficas como el nivel de instrucción del progenitor y la edad del hijo en la sobrecarga del cuidador. La mayoría de estas variables tienen una relación inversa con la sobrecarga. Conclusiones: Los resultados del estudio subrayan la importancia de investigar la sobrecarga del cuidador en situación de vulnerabilidad. Además, el estudio destaca la relevancia de factores como las estrategias de afrontamiento y el apoyo social, que desempeñan un papel clave en la sobrecarga del cuidador.(AU)

Aim: To analyze the relationship between coping strategies, social support, characteristics of migrant parent caregivers and their children with cancer on caregiver overload of such parents. Zarit Burden Interview (Zarit et al., 1980), the COPE Inventory (Carver et al., 1989) and the MOS Social Support Questionnaire (Sherbourne y Stewart, 1991) were used. Method: Eighty-two caregivers (67 mothers and 15 fathers) residing in shelters for children with cancer and their caregivers, who migrated to the city to receive treatment, participated in this study. Results: Two regression models were performed to evaluate the impact of demographic and psychological variables on caregiver burden, the first model involves the global social support scale (R2 adjusted=.43, F=9.73, p<.001) and the second the specific scales (R2 adjusted=.45, F=8.23, p<.001). Results: There is evidence the predictive role of coping strategies such as acceptance, positive reinterpretation and growth, focus and venting of emotions; global and affective social support; and sociodemographic characteristics such as parental level of education and child age in caregiver burden. Most of these variables have an inverse relationship with caregiver burden. Conclusions: The results of the study underline the crucial importance of investigating caregiver burden in the context of vulnerability. In addition, the study highlights the importance of factors such as coping strategies and social support, which play a key role in influencing caregiver burden.(AU)

Revisión Sistemática Sobre el Funcionamiento Familiar en Familias con un Hijo con una Enfermedad Poco Frecuente / Systematic Review on Family Functioning in Families of Children With Rare Diseases

El presente estudio es una revisión sistemática de las investigaciones realizadas sobre el funcionamiento familiar en familias con niños con una enfermedad poco frecuente. La búsqueda se realizó en las bases de datos Pubmed, EBSCO y Google Académico, siguiendo los lineamientos PRISMA. Luego de aplicar los criterios de inclusión y exclusión a los artículos 460 encontrados inicialmente, un total de 55 artículos conformaron la muestra final. A partir del análisis de los resultados se establecieron las siguientes temáticas abordadas en relación al funcionameinto familiar: impacto del diagnóstico; función y responsabilidades del cuidador; funcionamiento familiar; impacto en la esfera emocional; efectos en la vida conyugal y social; estrategias de afrontamiento; familia, cuidados y sistema de salud. Los hallazgos de este estudio pueden proporcionar una justificación para considerar los factores asociados al funcionamiento familiar al momento de dar el diagnóstico de una EPOF y pensar un tratamiento.(AU)

The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion criteria to the 460 articles initially found, a total of 55 articles made up the final sample. The following topics regarding family functioning were identified: impact of diagnosis; caregiver’s role and responsibilities; family functioning; impact on the emotional sphere; effects on marital and social life; coping strategies; family, and care and health system. The results of this study may provide justification for considering factors associated with family functioning when diagnosing a rare disease and deciding on treatment.(AU)

Effectiveness of a videoconferencing group-based dyad acceptance and commitment therapy on the quality of life of chronic heart failure patients and their family caregivers: A study protocol for a randomized controlled trial.

BACKGROUND: Chronic heart failure (CHF) poses a significant burden on both patients and their family caregivers (FCs), as it is associated with psychological distress and impaired quality of life (QOL). Acceptance and Commitment Therapy (ACT) supports QOL by focusing on value living and facilitates acceptance of psychological difficulties by cultivating psychological flexibility. A protocol is presented that evaluates the effectiveness of a dyad ACT-based intervention delivered via smartphone on QOL and other related health outcomes compared with CHF education only. METHODS: This is a single-center, two-armed, single-blinded (rater), randomized controlled trial (RCT). One hundred and sixty dyads of CHF patients and their primary FCs will be recruited from the Cardiology Department of a hospital in China. The dyads will be stratified block randomized to either the intervention group experiencing the ACT-based intervention or the control group receiving CHF education only. Both groups will meet two hours per week for four consecutive weeks in videoconferencing sessions over smartphone. The primary outcomes are the QOL of patients and their FCs. Secondary outcomes include psychological flexibility, psychological symptoms, self-care behavior, and other related outcomes. All outcomes will be measured by blinded outcome assessors at baseline, immediately post-intervention, and at the three-month follow-up. Multilevel modeling will be conducted to assess the effects of the intervention. DISCUSSION: This study is the first to adopt an ACT-based intervention for CHF patient-caregiver dyads delivered in groups via smartphone. If effective and feasible, the intervention strategy and deliverable approach could be incorporated into clinical policies and guidelines to support families with CHF without geographic and time constraints. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04917159. Registered on 08 June 2021.

Unpaid caregiving and mental health during the COVID-19 pandemic-A systematic review of the quantitative literature.

The COVID-19 pandemic imposed additional and specific challenges on the lives and wellbeing of informal unpaid carers. Addressing an important gap in the existing literature, this systematic review (prospectively registered with PROSPERO CRD42022376012) synthesises and evaluates the quantitative evidence examining the association between unpaid caregiving and mental health (compared to non-caring), during the pandemic. Five databases were searched (Medline, PsycInfo, EMBASE, Scopus, Web of Science) from Jan 1, 2020, to March 1, 2023. Population-based, peer-reviewed quantitative studies using any observational design were included, with screening, data extraction and quality assessment (amended NOS) independently conducted by two reviewers. Of the 3,073 records screened, 20 eligible studies (113,151 participants) were included. Overall quality of evidence was moderate. Narrative synthesis was complemented by Effect-direction and Albatross plots (given significant between-study heterogeneity precluded meta-analysis). Results indicate that the mental health of informal carers, already poorer pre-COVID compared to non-caregivers, was disproportionally impacted as a result of the pandemic and its associated public health containment measures. This review highlights the vulnerability of this group and should motivate political will and commensurate policies to ensure unpaid caregivers are better supported now, in the medium term, and crucially if, and when, another global public health emergency emerges.

We-Care-Well: exploring the personal recovery of mental health caregivers through Participatory Action Research.

Family caregivers play a critical role in supporting the recovery journeys of their loved ones, yet the recovery journeys of family caregivers have not been well-explored. Using a Participatory Action Research approach, we explore the personal recovery journeys of family caregivers for individuals with mental illness. This case study involved piloting and exploring the impact of a novel online workshop series offered to mental health caregivers at Ontario Shores Center for Mental Health Sciences. Recovery courses and workshops conventionally engage patients living with mental health conditions. In the current case, the recovery model is adapted to the needs and experiences of their family caregivers, resulting in a pilot workshop series called "We Care Well". Through participant-led discussions, interactive and take-home activities, and experiential learning, caregivers co-created workshop content and engaged in peer-learning on seven personal recovery-oriented topics. This included: self-care, resilience-building, non-violent communication, storytelling, and mental health advocacy. Throughout the sessions, participants implemented their learnings into their caregiving roles, and shared their experiences with the group to progress through their own recovery journeys. The We Care Well series was found to be an effective intervention to adapt and apply the personal recovery framework to mental health caregivers. PAR, and co-design are viable approaches to engage caregivers in mental health research, and can facilitate knowledge exchange, as well as relationship building with peers and program facilitators.

Development and validation of a patient reported experience measure for experimental cancer medicines (PREM-ECM) and their carers (PREM-ECM-Carer).

BACKGROUND: Our aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM. METHODS: Mixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility. RESULTS: Initial interview participants suggested the need for three PREMs, two specific to patients: (i) a 'prior' questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) 'on-trial' that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item 'prior' questionnaire was completed by 162 patients and 162 patients completed the draft 35-item 'on-trial' questionnaire. Hierarchical and Rasch analysis produced a 14-item 'prior' list and a 15-item list for 'on-trial'. Both patient PREM's demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings. CONCLUSIONS: The three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients' and their carers' experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.

Double-duty caregivers enduring COVID-19 pandemic to endemic: "It's just wearing me down".

The COVID-19 pandemic has considerably strained health care providers and family caregivers. Double-duty caregivers give unpaid care at home and are employed as care providers. This sequential mixed-method study, a survey followed by qualitative interviews, aimed to comprehensively understand the experiences of these Canadian double-duty caregivers amidst the pandemic and the transition to the endemic phase. The multi-section survey included standardized assessments such as the Double-duty Caregiver Scale and the State Anxiety Scale, along with demographic, employment-related, and care work questions. Data analysis employed descriptive and linear regression modeling statistics, and content analysis of the qualitative data. Out of the 415 respondents, the majority were female (92.5%) and married (77.3%), with 54.9% aged 35 to 54 years and 29.2% 55 to 64 years. 68.9% reported mental health decline over the past year, while 60.7% noted physical health deteriorated. 75.9% of participants self-rated their anxiety as moderate to high. The final regression model explained 36.8% of the variance in participants' anxiety levels. Factors contributing to lower anxiety included more personal supports, awareness of limits, younger age, and fewer weekly employment hours. Increased anxiety was linked to poorer self-rated health, and both perceptions and consequences of blurred boundaries. The eighteen interviewees highlighted the stress of managing additional work and home care during the pandemic. They highlighted the difficulty navigating systems and coordinating care. Double-duty caregivers form a significant portion of the healthcare workforce. Despite the spotlight on care and caregiving during the COVID-19 pandemic, the vital contributions and well-being of double-duty caregivers and family caregivers have remained unnoticed. Prioritizing their welfare is crucial for health systems as they make up the largest care workforce, particularly evident during the ongoing healthcare workforce shortage.

A Web-Based Intervention Based on Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Mixed Methods Feasibility Study.

BACKGROUND: Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. OBJECTIVE: The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. METHODS: A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). RESULTS: A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. CONCLUSIONS: Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2022-070499.

Caregiving consequences in cancer family caregivers: a narrative review of qualitative studies.

Background: Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. Method: This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. Results: The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). Conclusion: The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.

BACKGROUND: Informal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention "Being an informal caregiver - strengthening resources" aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs. METHODS: In this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design. RESULTS: Of 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified. CONCLUSIONS: This pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention "Being an informal caregiver - strengthening resources". Further research is needed to measure the efficacy of this intervention on informal caregivers' outcomes. Therefore, a multicentre randomized prospective study is planned.

Exploring coping strategies among caregivers of children who have survived paediatric cancer in Jordan.

OBJECTIVE: To explore the coping strategies of caregivers of children who have survived paediatric cancer in Jordan. MATERIALS AND METHODS: This study used a cross-sectional survey design and convenient sampling. The sample included 102 caregivers of children who have survived cancer, and outcome measures included the Arabic-translated Brief COPE, and caregiver and child demographic and condition questionnaire. Data analyses included descriptive statistics, analysis of frequencies, Spearman-rank order correlations and linear regression. RESULTS: Caregivers most frequently used religion coping (mean=6.42, SD=1.85), followed by acceptance (mean=5.95, SD=1.96) and planning (mean=5.05, SD=1.94). The least used coping strategies were humour (mean=2.98, SD=1.24) and behavioural disengagement as coping strategies (mean=3.01, SD=1.42). Having a female child predicted more self-distraction utilisation (ß=0.265, p=0.007). CONCLUSION: Caregivers of children who have survived cancer in Jordan frequently use passive coping strategies like religion and acceptance coping to overcome daily life stressors. Caregivers might benefit from psychosocial occupational therapy interventions to support their engagement in more active or problem-focused coping strategies.