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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]

Objectives: Families facing end-stage nonmalignant chronic diseases (NMCDs) are presented with similar symptom burdens and need for psycho-social-spiritual support as their counterparts with advanced cancers. However, NMCD patients tend to face more variable disease trajectories, and thus may require different anticipatory supports, delivered in familiar environments. The Life Rainbow Programme (LRP) provides holistic, transdisciplinary, community-based end-of-life care for patients with NMCDs and their caregivers. This paper reports on the 3-month outcomes using a single-group, pre-post comparison.Method: Patients with end-stage NMCDs were screened for eligibility by a medical team before being referred to the LRP. Patients were assessed at baseline (T0), 1 month (T1), and 3 months (T2) using the Integrated Palliative Outcome Scale (IPOS). Their hospital use in the previous month was also measured by presentations at accident and emergency services, admissions to intensive care units, and number of hospital bed-days. Caregivers were assessed at T0 and T2 using the Chinese version of the Modified Caregiver Strain Index, and self-reported health, psychological, spiritual, and overall well-being. Over-time changes in outcomes for patients, and caregivers, were tested using paired-sample t-tests, Wilcoxon-signed rank tests, and chi-square tests.Results: Seventy-four patients and 36 caregivers participated in this research study. Patients reported significant improvements in all IPOS domains at both 1 and 3 months [ranging from Cohen's d = 0.495 (nausea) to 1.793 (depression and information needs fulfilled)]. Average hospital bed-days in the previous month fell from 3.50 to 1.68, comparing baseline and 1 month (p < 0.05). At 3 months, caregiver strain was significantly reduced (r = 0.332), while spiritual well-being was enhanced (r = 0.333).Significance: After receiving 3 month's LRP services, patients with end-stage NMCDs and their caregivers experienced significant improvements in the quality of life and well-being, and their hospital bed-days were reduced. [ABSTRACT FROM AUTHOR]

A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018–2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15–17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling–Parent Carers. Sibling Carers and Sibling–Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal 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]

Purpose. This study investigated the experiences and expectations of unpaid caregivers who were members of a nonprofit social support organisation. Design and Methods. Colaizzi's phenomenological exploration was followed. Data were saturated after 15 in-depth individual interviews at a centre for people affected with dementia. Findings. The themes reported with the COREQ checklist were contributory to caregiver burden, the escalation of dementia symptoms, changes in family roles, psychological distress, social challenges, membership in a social network, and developing effective coping skills. Practice Implications. Access, availability, and continuity of psychosocial support programs are vital for the wellbeing of people affected with dementia. [ABSTRACT FROM AUTHOR]

Background: Parkinson's disease reduces patients' function, activities of daily living, and quality of life, and increases their guardians' burden of care. This study verified the effectiveness of a multimodal rehabilitation programme for patients with Parkinson's disease. Trial design: This study was a multicentre parallel randomised controlled, single-blind, trial conducted in three hospitals in Korea. Methods: A central randomisation centre used computer generated tables to randomly allocate 60 of 75 patients with Parkinson's disease who fulfilled the study requirements into experimental (n = 30; multimodal rehabilitation; consisting of daily living training, guardian education, home environment modification, fine muscle exercise, balance training, and training using auxiliary tools performed 50 min per session, twice a week, in 10 sessions) and control (n = 30; traditional rehabilitation; consisting of task-oriented training, joint exercise, and daily living training performed 50 min per session, twice a week, in 10 sessions) groups. Results: Multimodal rehabilitation for Parkinson's disease significantly improved the activities of daily living (p < 0.01) and quality of life of patients (p < 0.001) and eased the guardians' burden of care (p < 0.001). Conclusions: Multimodal rehabilitation is suggested to improve activities of daily living, quality of life of patients with Parkinson's disease, and reduce the burden of care of their guardians. [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]

Aim: To develop a comprehensive understanding of resilience and its associated factors among informal caregivers of people with heart failure. Design: Transnational multicentre convergent mixed methods approach. Methods: This study was conducted in three European countries: Italy, Spain and the Netherlands; during February 2017 and December 2018. In total, 195 caregivers completed the Connor–Davidson Resilience Scale, Caregiver Burden Inventory and Hospital Anxiety and Depression Scale. From a nested sample 50 caregivers participated in semi‐structured face‐to‐face interviews. Data were analysed using qualitative content analysis, multiple regression and joint displays. Results: The caregivers' mean age was over 60 years. The quantitative results showed that caregivers experienced anxiety and depression regardless of a good score of resilience and moderate level of burden. Regression analysis showed that the resilience was associated with caregiver depression. From qualitative findings three resilience inhibiting (psychological outlook, physical weariness and affective state) and two promoting factors (community interconnectedness and self‐comforting activities) were generated. Mixed analysis confirmed that depression decreased caregivers' resilience. Conclusions: Caregivers of people with heart failure experience continuous stress and anxiety resulting in reduced resilience. Collaborative efforts are needed to build multifaceted interventions and programs to enhance caregivers' resilience by targeting the factors identified in this study. Impact: The quality of informal caregiving is affected by the resilience of caregivers. No research has explored the resilience levels and its factors in this population. Depression, psychological outlook, physical weariness and affective state are negative factors of caregivers' resilience. Personal strategies combined with social and community support and belongingness enhance caregivers' resilience. Community care organizations and hospitals could establish alliances to develop programs for enhancing caregivers' resilience. [ABSTRACT FROM AUTHOR]