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This study assessed the quality of life of informal caregivers for individuals with mental health problems in the Netherlands. An online survey was administered to a panel of informal caregivers in June 2020 ( n = 261). Informal caregivers of persons with mental problems were found to have an exceptionally low quality of life. A high subjective burden ( p < .001), lower perseverance time ( p = .016), low caregiver overall health status ( p = .004) and psychological wellbeing ( p = .008), younger caregiver age ( p = .011), child caregiving responsibilities ( p = .025), and no social support network ( p = .038) were associated with worse quality of life scores. These findings shed light on the significant challenges faced by informal caregivers of persons with mental health problem. This raises concerns about the long-term sustainability of informal care and mental healthcare reform., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

(1) Background: This study investigated how potential shifts in patients' formal and informal care utilization during the COVID-19 pandemic impacted their informal caregivers in terms of their subjective burden, psychological wellbeing, and happiness. (2) Methods: A retrospective cohort study design was employed for a panel of Dutch informal caregivers of persons with mental health problems ( n = 219) in June 2020. Descriptive statistics and differences between means were determined for the patients' informal and care utilization and informal caregivers' subjective burden, happiness, and psychological wellbeing. Three mediation analyses were conducted using the PROCESS macro. (3) Results: Informal caregivers reported significantly worse happiness and subjective burden scores during the COVID-19 pandemic compared with before the lockdown. There were minimal shifts in patient's care utilization reported, with the exception of a decrease in significant emotional and practical support provided by the informal caregiver. In the mediation analyses, there was not a significant indirect effect of shifts in patients' formal care utilization on informal caregivers' subjective burden, psychological wellbeing, and happiness through shifts in patients' informal care utilization. (4) Discussion and conclusion: Whilst we found that shifts in patients' care utilization during the first wave of the pandemic did not affect the informal caregiver in the short term, it is unclear what the long-term impact of the pandemic might be on informal caregivers. More research should be conducted to understand the implications of short- and long-term impact of substitution on informal caregivers of persons with mental health problems, with special consideration of the COVID-19 context and uptake of e-health technology.

We conducted a systematic literature review to identify and review the concepts and questionnaires used to assess the impact of caregiving on caregivers for adults with a mental disorder. With our study, we aimed to provide an overview and categorize the conceptualization and operationalization of the impact of caregiving, with special attention for the complexity and multi-conceptualization of concepts. Embase, Medline, PsycInfo, Web of Science Core Collection, Cochrane Central Register of Trials, Cinahl Plus, Econlit and Google Scholar were systematically searched for articles from 1 January 2004 to 31 December 2019. Eligible articles were peer-reviewed studies that assessed the impact of caregiving for informal caregivers of adults with a reported mental disorder by means of a questionnaire. The complete study protocol can be found on PROSPERO (CRD42020157300). A total of 144 questionnaires were identified that assessed the impact of caregiving. Based on similarities in meaning, concepts were classified into 15 concept clusters. The most frequently assessed concept clusters were mental health, caregiving burden, other caregiving consequences, family impact, and overall health-related outcomes. The use of concept clusters differed per diagnosis group, with diagnoses, such as schizophrenia, using a wide range of caregiving impact concepts and other diagnoses, such as personality disorders, only using a limited range of concepts. This is the first study that identified and reviewed the concepts and questionnaires that are used to assess the impact of caregiving. Caregiving is researched from a broad array of perspectives, with the identification of a variety of concepts and dimensions and use of non-specific questionnaires. Despite increasing interest in this field of research, a high degree of variability remains abundant with limited consensus. This can partially be accredited to differences in the naming of concepts. Ultimately, this review can serve as a reference to researchers who wish to assess the impact of caregiving and require further insight into concepts and their respective questionnaires., Competing Interests: The authors have declared that no competing interests exist.