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Background: The COVID‐19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105) and during the first waves of COVID‐19 in June (N = 207) and October 2020 (N = 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions. Results: No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL. Conclusions: Although relatives' QoL remained stable, the pandemic poses non‐negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support. [ABSTRACT FROM AUTHOR]

Aim: The study aimed to translate and adapt the traditional Chinese Food Allergy Quality of Life‐Parental Burden Questionnaire (TC‐FAQL‐PB) into simplified Chinese language and determine the validity and reliability of the translated version. Design: A methodologic study design involving instrument translation and psychometric evaluation was used for the present study. Methods: The simplified Chinese FAQL‐PB (SC‐FAQL‐PB) was developed following Guillemin's guidelines for cross‐cultural adaptation. A convenience sample of 230 participants was recruited. The psychometric properties were examined using internal consistency, test–retest reliability, item discrimination, content validity and construct validity. Results: The values of I‐CVI ranged from 0.83 to 1.00. The CFA model revealed that the study supported the two‐factor model. The questionnaire had good internal consistency with a Cronbach's alpha coefficient of 0.946. The item‐total correlation values ranged from 0.707 to 0.866. Test–retest reliability showed that the intraclass correlation coefficient was 0.926 (95% CI, 0.830–0.968). [ABSTRACT FROM AUTHOR]

Aim: To examine specific correlates that may affect retention outcomes of neural stem cell therapy trials in families screened for cerebral palsy. Design: A prospective correlational study. Methods: Primary caregivers completed surveys of psychological resilience, care burden and family caregiver tasks. The overall data and differences between groups were analysed and compared. Results: Resilience was negatively correlated with the care ability and closely related to the monthly household income and educational level of the caregivers. Factors affecting the final retention rate included the type of disease, number of combined disorders, monthly household income, primary caregivers' education level and resilience. Conclusion: Economic level, literacy and psychological status may affect trial retention. These findings can provide tips for preparing for subsequent screening, identification and intervention in stem cell clinical trials. Implication for the Profession and/or Patient Care: The study results may provide nursing care tips to make recruitment more efficient, reduce trial costs, support patient‐centredness and accelerate trial progress. No Patient or Public Contribution: The target population involves the primary caregivers of children living with cerebral palsy. However, neither patients nor the public contributed to the design or conduct of the study, analysis, or interpretation of the data, or preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Background: Childhood cancer is proportionately higher in Africa and these result in increased demands on caregivers. The inability of affected children to take care of themselves; coupled with prescribed medical interventions presents physical and social burdens on family caregivers. Aims and methods: This study used a qualitative exploratory design to explore the physical and socioeconomic challenges for family caregivers of children diagnosed with cancer and receiving care at one of the biggest tertiary hospitals in Ghana. A total of thirteen family caregivers of children with cancer were interviewed. Findings: Two major themes were identified: Burden of care on Physical Health and Socioeconomic burdens of caregiving on the family caregiver. It was reported that family caregivers encounter physical challenges such as Aches and Pains when performing caregiving activities, Loss of Appetite, Fatigue, Compromised Functional State and Sleep Disruption. The second theme, Socioeconomic burdens of caregiving on family caregivers account for the consequences of caregiving on social lives, family relationships, finance and employment. Conclusions and recommendations: The study recommends that measures that provided relief for the caregivers such as teaching them to adopt local measures of pain relief such as massage should be encouraged. Policies should adopt measures that encourage caregivers to have some days of rest whiles providing care to their children with cancer. Also, health insurance packages that provide relief for the cost of accessing healthcare, should be extended to children with cancers to support their caregivers. [ABSTRACT FROM AUTHOR]

Aim: Our study aimed to investigate the caregiving burden and its associated factors in family caregivers of patients with schizophrenia. Design: Correlational study. Method: Using the convenience sampling method, 215 caregivers were recruited from outpatient clinics affiliated with a tertiary referral psychiatric hospital in Iran. The caregiving burden was measured by the Zarit Burden Interview (ZBI‐22), and associations between caregiving burden and potential factors were examined using multiple regression analysis. We used the STROBE checklist to report the results. Results: Family caregivers of patients with schizophrenia reported a high level of caregiving burden, with 38.2% of the caregivers perceiving severe burden relating to their role. In the regression analysis, age, gender, educational level, income, job loss due to caregiving, relationship with patient, disease duration and frequency of caregiving were statistically significant predictors of caregiving burden. The regression model explained 54.4% of the variance of caregiving burden. [ABSTRACT FROM AUTHOR]

Background: The objective of this study was to assess the feasibility, acceptability, and potential efficacy of ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone-a lay navigator-led, early palliative care telehealth intervention for African American/Black and/or rural-dwelling family caregivers of individuals with advanced cancer (ClinicalTrials.gov identifier NCT03464188).Methods: This was a pilot randomized trial (November 2019 to March 2021). Family caregivers of patients with newly diagnosed, stage III/IV, solid-tumor cancers were randomized to receive either an intervention or usual care. Intervention caregivers were paired with a specially trained lay navigator who delivered 6 weekly, 20-minute to 60-minute telehealth coaching sessions plus monthly follow-up for 24 weeks, reviewing skills in stress management, self-care, getting help, staying organized, and future planning. Feasibility was assessed according to the completion of sessions and questionnaires (predefined as a completion rate ≥80%). Acceptability was determined through intervention participants' ratings of their likelihood of recommending the intervention. Measures of caregiver distress and quality of life were collected at 8 and 24 weeks.Results: Sixty-three family caregivers were randomized (usual care, n = 32; intervention, n = 31). Caregivers completed 65% of intervention sessions and 87% of questionnaires. Average ratings for recommending the program were 9.4, from 1 (not at all likely) to 10 (extremely likely). Over 24 weeks, the mean ± SE Hospital Anxiety and Depression Scale score improved by 0.30 ± 1.44 points in the intervention group and worsened by 1.99 ± 1.39 points in the usual care group (difference, -2.29; Cohen d, -0.32). The mean between-group difference scores in caregiver quality of life was -1.56 (usual care - intervention; d, -0.07). Similar outcome results were observed for patient participants.Conclusions: The authors piloted ENABLE Cornerstone, an intervention for African American and rural-dwelling advanced cancer family caregivers. The acceptability of the intervention and data collection rates were high, and the preliminary efficacy for caregiver distress was promising.Lay Summary: To date, very few programs have been developed to support under-resourced cancer family caregivers. To address this need, the authors successfully pilot tested an early palliative care program, called Educate, Nurture, Advise, Before Life Ends (ENABLE) Cornerstone, for African American and rural family caregivers of individuals with advanced cancer. Cornerstone is led by specially trained lay people and involves a series of weekly phone sessions focused on coaching caregivers to manage stress and provide effective support to patients with cancer. The authors are now testing Cornerstone in a larger trial. If the program demonstrates benefit, it may yield a model of caregiver support that could be widely implemented. [ABSTRACT FROM AUTHOR]