Mental health and well-being of unpaid caregivers: a cross-sectional survey protocol.

INTRODUCTION: Unpaid caregiving, care provided by family/friends, is a public health issue of increasing importance. COVID-19 worsened the mental health conditions of unpaid caregivers, increasing substance/drug use and early development of chronic disease. The impact of the intersections of race and ethnicity, sex, age and gender along with unpaid care work and caregivers' health and well-being is unknown. The aim of this study is to describe the inequities of caregiver well-being across the intersections of race and ethnicity, sex, age and gender using a cross-sectional survey design. METHODS AND ANALYSIS: We are collaborating with unpaid caregivers and community organisations to recruit a non-probability sample of unpaid caregivers over 18 years of age (n=525). Recruitment will focus on a target sample of 305 South Asian, Chinese and Black people living in Canada, who represent 60% of the Canadian racial and ethnic populations. The following surveys will be combined into one survey: Participant Demographic Form, Caregiver Well-Being Index, interRAI Self-report of Carer Needs and the GENESIS (GENdEr and Sex DetermInantS of Cardiovascular Disease: From Bench to Beyond-Premature Acute Coronary Syndrome) PRAXY Questionnaire. Sample characteristics will be summarised using descriptive statistics. The scores from the Caregiver Well-Being Index will be dichotomised into fair/poor and good/excellent. A two-stage analytical strategy will be undertaken using logistic regression to model fair/poor well-being and good/excellent well-being according to the following axes of difference set a priori: sex, race and ethnicity, gender identity, age, gender relations, gender roles and institutionalised gender. The first stage of analysis will model the main effects of each factor and in the second stage of analysis, interaction terms will be added to each model. ETHICS AND DISSEMINATION: The University of Toronto's Health Sciences Research Ethics Board granted approval on 9 August 2022 (protocol number: 42609). Knowledge will be disseminated in pamphlets/infographics/email listservs/newsletters and journal articles, conference presentation and public forums, social media and through the study website. TRIAL REGISTRATION NUMBER: This is registered in the Open Sciences Framework with a Registration DOI as follows: https://doi.org/10.17605/OSF.IO/PB9TD.

Validating the Five-Item World Health Organization Well-Being Index.

Purpose: Research on the psychological well-being of caregivers of children diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD) suggests that the well-being of parents and caregivers has been negatively affected by the COVID-19 pandemic. Although the psychological well-being of caregivers is a major concern, few validated well-being measures exist for caregivers of children diagnosed with ADHD. Therefore, a valid self-report scale is needed to assess well-being during the pandemic. The brief Five-Item World Health Organization Well-Being Index (WHO-5) has previously been used in studies on caregivers. However, its validity in this population remains unknown. This study aimed to evaluate the reliability and construct validity of the WHO-5 with caregivers of children with ADHD. Methods: A cross-sectional anonymous online survey was conducted in Norway. The study recruited caregivers from a community sample during the COVID-19 pandemic. This was carried out to investigate the construct validity by exploring the relationship between well-being, quality of life, social support, self-reported psychological distress, and perceived stress. Results: The findings of unidimensionality and high internal consistency, together with the results from the hypothesis testing, demonstrate the reliability and construct validity of the Norwegian version of the WHO-5 in this population. Conclusions: This study provides the first empirical evidence of the validity and reliability of the WHO-5 from a sample of Norwegian caregivers of children diagnosed with ADHD, with excellent reliability and construct validity. The scale can be used to systematize the measurement of well-being in caregivers because of its brevity and good psychometric properties, making it a valuable resource in research settings and assisting healthcare professionals in their crucial work of caring for caregivers.

Fighting the waves; Covid-19 family life interference in a neurodevelopmental disorder-caregiver population.

INTRODUCTION: The current COVID-19 pandemic interferes with family lives across the world, particularly families of children with neurodevelopmental disorders (NDDs) are at a greater risk for being negatively impacted by the pandemic. Together with representatives from this caregiver population the aim was to explore the interference associated with normal family life caused by the COVID-19 pandemic. METHOD: This is a descriptive study using a cross-sectional design. Following a strategic network sampling strategy, a user-developed national survey was completed by a larger sample (N = 1,186) of parents and informal caregivers of children with NDDs. The survey utilized a combination of both closed and open-ended questions, and a logistic regression analysis was carried out to assess the association between family characteristics, characteristics of the child, and COVID-19 related family life interference. Before carrying out the regression an inductive content analysis of the open-ended question on `How has the isolation affected the family´ was carried out to construct the outcome variable. RESULTS: The initial analysis indicated that the COVID-19 pandemic induced a shift in everyday family life and a lack of guidance and support related to managing the challenges they were facing. Caregivers who reported that COVID-19 had significantly interfered with their family life, were more likely to report having anxious children, and to have experienced an increased number of conflicts at home. The logistic regression showed that both anxious children and increased conflicts considerably increased the risk for reporting family life interference compared to those that reported no increased conflicts or anxious children. DISCUSSION: Considering how the COVID-19 related increased conflicts at home and anxious children threaten the family life of the NDD caregiver population, as an external source of family stress, which might lead to negative impact on their mental and physical well-being, the need for further research in collaboration with user representatives is apparent. Our study suggests that more information should be provided to healthcare providers, social professionals, peers, people with NDDs, and caregivers of people with NDDs about the potential threats that a stressful life event such as the current pandemic can pose to their mental and physical health and their family life.