Unraveling the complexities: A scoping review of the collateral effects on informal caregivers during and beyond the COVID-19 pandemic

Abstract

Due to the COVID-19 pandemic, various infection control measures were introduced that had a profound effect on caregiving dynamics and created burdens in the daily lives of informal caregivers (ICs). A scoping review was conducted to identify burden and support factors for ICs during and beyond the pandemic. Studies were included when they examined ICs’ care work during the official time period of the COVID-19 pandemic (March 2020–May 2023) and care hours worked per day or week were specified. Only studies with adult participants and studies in German or English language were incorporated. The scoping review considered quantitative cross-sectional and longitudinal studies involving randomized/quasi-randomized controlled trials, cohort studies, case studies, mixed-methods, and qualitative studies as well as reviews and meta-analyses. The electronic databases PubMed, the Cochrane COVID-19 Study Register, and EBSCO Host were systematically searched. The search was limited to articles published between 2020 and 2024. The scoping review was conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews. Overall, 42 studies with 51,183individuals met the inclusion criteria and were included in the scoping review. Main findings suggested that the pandemic-related measures caused additional care burden for ICs and worsened the already poor situation of informal care. In particular, the lack of support from health services and the increase in care hours were described as burdensome. Additionally, studies indicated an increase in rates of depression and overall poor mental health, particularly affecting female ICs. Social and formal care support were mentioned as main support factors. Consequently, preparation of future crises should focus on formal health services and structures to promote social support and mental health of ICs during pandemics.

Keywords

scoping review COVID-19 pandemic informal caregivers

Introduction

The COVID-19 pandemic had extensive negative consequences on individuals’ employment, financial stability, social interactions, and both, physical and mental health.¹ Its impact has been especially severe on vulnerable populations with evidence suggesting that preexisting health disparities have worsened as a result. Informal caregivers (ICs) of related persons with for instance, dementia, cancer, or other physical impairments are such a vulnerable population. ICs are essential in providing ongoing care, support, and help with navigating healthcare systems. They also advocate for individuals who need assistance with daily tasks, often without any formal training.² Data indicates that around 349 million individuals worldwide are estimated to receive care, and the majority of those persons cared for (PCF) receives assistance at home from their family members (World Health Organization (WHO), 2017). Even before the onset of the COVID-19 pandemic, ICs faced significant challenges in managing their caregiving responsibilities. Among ICs across the European Union, approximately 50%–66% also maintain employment.³ Balancing both roles put ICs at an increased risk of experiencing depression and physical health problems.^4,5 Due to the pandemic, various infection control measures such as restrictions on social interactions, as well as reductions or discontinuations of formal care services were introduced that had a profound effect on caregiving dynamics and the daily lives of ICs. Those measures may have intensified struggles such as social isolation, loneliness, financial difficulties, and a decline in both, mental and physical health.⁴

Although certain reviews examined the experiences of ICs focusing on the impact of COVID-19-related restrictions and interventions designed to support caregivers, there is a lack of a broad exploring review of burden and support factors during and also beyond the COVID-19 pandemic. As part of the CollPan (Collateral Effects in Pandemics) project, which was conducted within the scope of the Netzwerk Universitätsmedizin (NUM 2.0) and funded by the Federal Ministry of Education and Research (Bundesministerium für Bildung und Forschung, BMBF), this scoping review aims to examine the burden and support factors for ICs during and beyond the COVID-19 pandemic, which officially began in March 2020 and was declared over in May 2023 by the WHO. A scoping review was chosen as the most appropriate methodology due to its exploratory nature, allowing for the inclusion of a wide range of literature sources.

To assess the overarching research question “What impact did the COVID-19 pandemic have on informal caregivers?” articles that include ICs providing unpaid care for related individuals were included. Care must have been provided during the official period of the COVID-19 pandemic from March 2020 until May 2023 (WHO). The impact of the COVID-19 pandemic in the form of burden and support factors for ICs was investigated. Examples are mental health, physical health, financial burdens and support, time burden and support, social burden and support, and loneliness.

Methods

The scoping review was conducted in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews.⁶ The reporting of this scoping review conforms to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR)⁷ and can be found in Supplemental Appendix A. The aim was to determine the scope of literature on the impact of the COVID-19 pandemic on informal care work across the world as well as identify burden and support factors for ICs.

Protocol

The scoping review protocol was also developed in accordance with the JBI methodology for scoping reviews.⁶ The draft protocol was revised upon receiving feedback from the research team, including methodologists, and is available on the research platform OSF (https://doi.org/10.17605/OSF.IO/KDHXZ).

Inclusion and exclusion criteria

Studies were included when they examined ICs providing unpaid care for related individuals and investigated ICs perceived burden and support factors during the official time period of the COVID-19 pandemic (March 2020–May 2023). Declaration of care hours worked per day or week was an inclusion criterion as well. Studies of only adult participants were incorporated in the analysis. The following types of studies were included in the scoping review: Quantitative cross-sectional and longitudinal studies involving randomized/quasi-randomized controlled trials and cohort as well as case studies. Mixed-methods and qualitative studies were also considered as well as reviews and meta-analyses that met the inclusion criteria. Only studies in English or German language were considered.

Studies were excluded when they did not specify how many hours of informal care work participants provided. ICs of patients in Intensive Care Units (ICU), long-term care hospitals, and other long-term care facilities and studies in which only visitation restrictions were addressed were also excluded. Further, ICs not providing formal care tasks were excluded. Reports and opinion papers were not considered.

Search procedure

The search was conducted on April 12, 2024. In order to obtain records only concerning COVID-19, the search was limited to articles published between 2020 and 2024. The following databases were searched: PubMed, Cochrane COVID-19 Study Register, and EBSCO Host including APA PsycArticles, APA PsycInfo, CINAHL, and Medline. A two-step search methodology was followed. First, an initial limited search for titles and abstracts was conducted to identify articles on the topic and additional search terms. Second, an extensive search was undertaken applying the initial search terms as well as the additional terms that were identified in Step 1 of the search process. The following search string with three levels (Participants: Informal Caregiver, Concept: Care, Context: COVID-19 pandemic) was applied: (Informal caregivers) OR (caring relatives) OR (family caregivers) AND nursing OR (home care) OR care AND COVID-19 OR SARS-CoV-2 OR corona. To restrict the search to adequate articles, a filter for human studies, publication date (2020–2024), types of sources, and age (adults) was applied in the respective databases. The search strategy was applied to all included databases, respectively.

Study selection

The flowchart (Figure 1) displays the search and selection process. The initial search resulted in 1022 records through database searching (EBSCOhost = 329, PubMed = 591, Cochrane COVID-19 Study Register = 102). Overall, 316 duplicate records were removed automatically with Rayyan,⁸ which was supervised manually by one author. After removal of duplicates, the title and abstract search followed (n = 706) with two authors screening independently 50% of the records each. Ten percent of the 706 articles were screened double in blind mode by two authors to ensure author agreement. There was one study for which the authors arrived at a different rating (agreement of κ ≈ 1). The disagreement was discussed in a consensus meeting. Due to not matching inclusion criteria, 475 articles were excluded. After screening title and abstract, 231 records remained for full-text screening with two authors screening 50% of the records respectively. Of the 231 records, 10% were screened double in blind mode by both authors to assure author agreement. There were no studies for which the author group arrived at different ratings. In total, 39 articles met the eligibility criteria. To ensure topicality of the scoping review, the described search procedure was repeated on October 13, 2025 including articles published between 2024 and 2025. Three further articles meeting the eligibility criteria were found. Overall, 42 articles are therefore included in the scoping review.

Figure 1.

Flowchart of literature search and study selection.

Extraction procedure

The extraction procedure was done by two authors working parallel using a pilot-tested, standardized data sheet developed by the authors. Entities to extract were burden and support factors for ICs, disease of PCFs, care tasks, study design, sample (gender, size, age, caregiving hours/week or day), authors, year of publication, country of publication as well as mental health measurements, main topic of publication, main outcome, and recommendations for action. The two authors had ongoing discussions about the extraction procedure.

Results

Study characteristics

Table 1 provides an overview of the 42 eligible articles evaluating burden and support factors of ICs during the COVID-19 pandemic. Most of the studies were conducted in the United States (n = 11), four in Canada, respectively, three in Spain, Brazil, in the United Kingdom and Netherlands, respectively, two in Germany, and Portugal. One study came from Iran, Japan, Austria, Lithuania, New Zealand, Singapore, Ireland, and Slovenia each. Two studies were conducted in two countries: one in United Kingdom and Ireland, and the other in Germany and Italy.

Table 1.

Scoping review included articles.

Authors (year)	Country	Study design	Sample size	Sample age	Sample gender (female %)	Hours of caregiving	Disease of PCF	Burden	Support
Alfonzo et al. (2023)	UK	Quantitative cohort study	13,557	15–65+	51.1	0–20+ h/week		Low household income, being unemployed, being female, intense caring (20+ h/week), poor mental health
Allen et al. (2022)	New Zealand	Longitudinal	718	M = 66.3 (SD = 7.67)	62.8	M = 29.6 h/week (SD = 48.10)		Low living standard, unemployment, less help from family/friends, cohabitating with PCF
Anderson et al. (2021)	Canada	Cross-sectional mixed methods	604	34.9%, 55–64 years	80.8	<10 h/week before COVID-19		Loneliness, anxiety, not able to see PCF, too much care work	Doing pleasant activities with PCF, spending leisure time with PCF not only care time
Anderson et al. (2022)	Canada	Cross-sectional quantitative	474	36.5%, 55–64 years	83.3	44.3%, 21+ h/week		Financial difficulty, social loneliness, gender, age
Anderson et al. (2024)	USA	Cross-sectional mixed methods	11	M = 43.1 (SD = 17.9)	80	At least 8 h/week	Elderly adults with a chronic condition	Food security, obtaining medication, less social contact, worse mental and physical health, higher perceived stress, loss of social and caregiving support	Digital health resource, for example, apps and social media, caregiving groups as social support
Augusto Estevam et al. (2022)	Brazil	Cross-sectional quantitative	30	M = 37.03 (SD = 10.81)	96.7	M = 12 h/day	Neuropsychomotor disorders	Decrease in social contacts, decline in leisure time activities
Baik et al. (2022)	USA	Cross-sectional qualitative	13	M = 70 (SD = 5.5)	85	M = 47.8 h/week	Heart failure, mild cognitive impairment	Limitation healthcare services, limitation managing physical health of carers itself	Emotional and social support
Biliunaite et al. (2022)	Lithuania	Cross-sectional quantitative	226	M = 49.7 (SD = 12.70)	87.6	35.3%, 12 h/day	Dementia and old age	No feeling of support, becoming unemployed, worse physical and mental health, (severe) financial problems, less time for carers themselves	Caregiving-related support, financial aid, psychological help, recognition of caregiving as part of working experience, more respite days
Borges-Machado et al. (2020)	Portugal	Cross-sectional quantitative	36	M = 64.94 (SD = 13.54)	41.7	36.1%, 4–7 h/day	Dementia or other brain diseases	PCF declined health, unemployment, coordination with children and PCF, increased sense of responsibility, home confinement
Bremmers et al. (2023)	Netherlands	Cross-sectional cohort study	219	M = 47.4 (SD = 16.10)	59.8	At least 2 h/week	Mental health issues	Decrease of emotional and practical support, increased care hours
Czeisler et al. (2021)	USA	Cross-sectional quantitative	1362	18–65+	50.1	46.3%, 21–40 h/week		Worse mental health (Black NH and Hispanic worse mental health)
de Sousa et al. (2022)	Portugal	Cross-sectional qualitative	65	M = 53.0	83.1	M = 3.3 h/day (SD = 0.99)	Dementia, stroke, cancer, and other physical or mental health issues	No help to care, social isolation, deprivation of support from social institutions for example daycare centers, more workload during pandemic, teleworking while caring, decrease of time for caregivers themselves, tiredness	(Formal) care help
Denche-Zamorano et al. (2022)	Spain	Cross-sectional quantitative	2225	M = 52.0	61.17	40.3%, 20+ h/week	Elderly adults and individuals with chronic conditions	Worse mental health	Physical activity
Ferizi et al. (2022)	Iran	Cross-sectional quantitative	249	M = 45.1	80.7	M = 48 h/week	Alzheimer, Parkinson, stroke	Increased care hours, anxiety to get infected with COVID-19	Social support
Flemons et al. (2022)	Canada	Cross-sectional mixed methods	21	M = 63	100	42%, 40+ h/week	Dementia	Insecurity about disease of PCF, no information for caregivers during first pandemic wave, uncertain future, care more complex and stressful, access to care resources diminished, risk of getting COVID-19, worse mental health and physical health	Getting information specific for circumstances, video calls with PCF, centralized information hub, connecting with others in similar situation
Gräler et al. (2022)	Netherlands	Cross-sectional quantitative questionnaire	965	M = 52.2 (SD = 15.97)	55	M = 27.5 h/week		Gender, low income, worse mental health, childcare responsibilities, increased care hours, caring for someone with decreased physical health	Good mental health
Han et al. (2023)	USA	Cross-sectional qualitative	19	M = 54.6 (SD = 15.1)	100	47.4%, 40 h/week	Dementia	No formal care help, protect relatives from COVID-19 infection, closed daycare programs for PCF, working fulltime and care tasks all day, childcare, worse mental health, social isolation	Support groups, help from paid caregiver, developing a routine at home, self-care, music and TV, take a walk, exercising, reading
Harris and Titler (2022)	USA	Cross-sectional qualitative	21	M = 66.2	81	M = 84.0 h/week	Dementia	Loneliness, fatigue, feelings of being judged by others, stress, isolation, concerns for future, afraid of COVID-19, no experience in caregiving, not being able to have vacation	Togetherness, appreciation for small things, spending a lot of time with PCF, self-care, routine, respite care, support from healthcare providers, virtual activities, social support programs
Hvalic-Touzery et al. (2022)	Slovenia	Cross-sectional quantitative	612	M = 57.63 (SD = 10.85)	51	M = 18.3 h/week	Chronic diseases, dementia	No formal care help, more intensive/demanding care (more care hours, care tasks), caring for Person with Dementia (PwD) or other memory impairments
Irani et al. (2021b)	USA	Cross-sectional mixed methods	69	M = 54.7 (SD = 13.6)	87	53.6%, <20 h/week		Worries about getting sick, unable to get help from others due to restrictions, visitation restrictions, more difficult to get medication and supplies due to restrictions, not spending time with loved ones, getting less information from healthcare providers	COVID -19 restrictions: spending more time with loved ones, connection to new support, less worries about other responsibilities
Kaushal et al. (2024)	USA	Longitudinal	142	M = 65.3 (SD = 12.8)	77.5	M = 10.4 h/day	Dementia	Increased caregiver burden, increased perceived threat to acquiring illness
Lee et al. (2022)	USA	Cross-sectional qualitative	26	M = 64	80.8	69.2%, 40+ h/week		Social isolation
Linden et al. (2023)	UK, Ireland	Cross-sectional qualitative	126	18–84	82	74%, 10+ h/day	Multiple intellectual disabilities	Isolation, changes in caregiving routine, closing of services for carers due to lockdown, caring for a severe risk patient, constant change of rules regarding hospital policies, no technical knowledge of example zoom, need to fight for services, feeling devalued, exhaustion	Increased family time due to lockdowns, online activities for example online cooking courses, online appointments, support by other carers
Mak et al. (2021)	UK	Longitudinal	Informal carer: 6477	59.3%, 30–59 years	55.6	13%, <30 min; 13%, 30 min–2 h; 14%, 6+ h/day		Worse mental health, chronic health issues	Sense life being worthwhile through caring
McGarrigle et al. (2022)	Ireland	Longitudinal	3670	M = 70.9 (SD = 8.50)	52.7	41.75%, 1–19 h/week		Intense caring hours, decrease quality of life, increase depressiveness, gender, reduced social interactions, less formal help	Home help (state or private)
Otobe et al. (2022)	Japan	Cross-sectional quantitative	700	M = 56.5	49.7	M = 2.5 h/day	Cancer, heart failure, stroke, diabetes, falls and fractures, neurological disorder, dementia	Depressive symptoms, little external support, changes in care situation, intense care hours	Having home care or visiting care services
Qian et al. (2023)	USA	Cross-sectional qualitative	24	33.33%, 50–59 years	75	<20–40+ h/week	Cancer	Living in rural areas, COVID-19 restrictions, care overload, financial struggles, having family-related and care-related tasks	Gratitude for caring, increased closeness with PCF, perceived peer support, faith, personal growth (e.g., learning new skills), appreciation of care work
Qin et al. (2024)	Singapore	Cross-sectional quantitative	1094	50–70+	57.4	M = 26.6 h/week (SD = 30.80)		Lockdown, older age, poor health, social isolation, caring for non-cohabitating person	Caregiving network
Río-Lozano et al. (2022)	Spain	Cross-sectional epidemiological	261	57.5%, 45–64 years	63.22	50.3%, 8–14 h/day		Being female, reduction in support systems, low social support, poor self-reported general health, increased care hours	Formal and informal help with caregiving, home help service, home medical, and nursing services
Rodrigues et al. (2021)	Austria	Longitudinal	2000	20–64	T0: 49.30; T1: 47.58	T0: M = 15.27 h/week; T1: M = 14.06 h/week		Increased care hours, worse mental health	Community solidarity, care networks
Rodriguez-Mora et al. (2023)	Spain	Cross-sectional quantitative	30	M = 52.6 (SD = 9.5)	90	M = 11.5 h/day (SD = 7.95)		Changes in caregiving routine, lack of or decrease in social support, increased caregiving hours per day, worsening health of PCF, worse mental health
Santini et al. (2022)	Italy, Germany	Cross-sectional quantitative	319	M = 55.4	83.02	M = 45.6 h/week (SD = 50.00)	Physical and mental health issues, cognitive impairments, neurological disabilities, chronic illnesses for example diabetes, cancer, etc.	Cohabitating with PCF, increased care hours, discontinuity of formal social and healthcare service	Face-to-face support groups, helplines, online support groups, practical external help, meal delivery, respite care, education and training for caring, financial support, medication delivery, transportation help
Schmidt et al. (2021)	Brazil	Cross-sectional quantitative	35	M = 52.2 (SD = 10.01)	100	At least 20 h/week	Dementia	Deterioration of health of PCF, changes in routines due to lockdown/restrictions, not able to leave home, increased care hours, lack of external help, new care tasks, maintaining social distancing, lack of social support
Silva et al. (2022)	Brazil	Cross-sectional quantitative	50	M = 54.7 (SD=15.10)	94	M = 17.5 h/day (SD = 8.6)		Living with PCF, higher age
Smaling et al. (2022)	Netherlands	Cross-sectional qualitative	Informal carer: 20	Informal carer: M = 65.3 (SD = 16.4)	Informal carer: 40	Informal carer: M = 90.8 h/week (SD = 71.5)	Dementia	Deterioration of health in care recipient, being unable to visit care recipient in long-term care, changes in care routine, anxiety about care recipient’s safety	Community efforts in the Netherlands to support PwD
Sriram et al. (2021)	UK	Cross-sectional qualitative	23	51–85	78.3	At least 10 h/week	Dementia	Discontinuation of care support and services, worse health of PCF, changes in daily life, visitation restriction, being uncertain about future	Social support in care work, respite care, using technology for socializing, formal care support
Turner et al. (2023)	USA	Cross-sectional quantitative	72	M = 62.8	90.3	M = 9 h/day		Not prepared to let someone else take over care tasks, stress, intense caregiving hours	Higher resilience
Velarde-García et al. (2024)	Spain	Cross-sectional qualitative	21	M = 60.5 (SD = 10.14)	85.7	3–24 h/day	Dementia	Changes in caregiving routines, cognitive state of PCF, deterioration of health status of PCF, loss of formal care support, deterioration of carers’ health, loneliness, fear of infection with COVID-19	Help from healthcare professionals, distraction with leisure activities
Wister et al. (2022)	Canada	Longitudinal	14,118	40%, 50–64 years	56	78%, <5 h/week		Increased caregiving hours, in-home caring, gender, cohabitating with PCF
Zwar et al. (2023)	Germany	Cross-sectional quantitative	392	M = 62.1	64.6	M = 23.1 h/week			Supportive informal network
Zwar et al. (2023b)	Germany	Cross-sectional quantitative	489	M = 58.4	61.6	M = 12.1 h/week		Changes in caregiving routine, gender, perceived danger for PCF, perceived danger for caregiver

PCF: person cared for.

Most studies used a cross-sectional quantitative design (n = 18) and 13 used a cross-sectional qualitative design. Nine studies measured burden and support factors of ICs with a longitudinal approach, and five studies used a mixed-methods design. Four studies used data from a national survey.

Sample characteristics

In total, 51,183 individuals were examined throughout the 42 included studies. The smallest sample consisted of 11 individuals and was a mixed-methods study⁹ whereas the largest sample consisted of 14,118 individuals.¹⁰ The majority of the participants were female. Three studies examined only women.^11–13 Only four studies included more male than female or equal male participants.^14–17 The mean age of ICs in all n = 27 studies that stated the mean age of participants was 56.2. Age ranged from 15 to 80+ years. If possible, care hours were stated as average care hours per week or day. The mean care hours per week in all studies that indicated the mean hours of care per week (n = 13) is 35.6. In two studies, some of the participants provided care for more than 100 h/week.^18,19 The least care was provided in Bremmers et al. where 13% of the participants spent 30 min with informal care per week.²⁰

Diseases of PCF were specified in 22 studies. Most of the studies included PCF with dementia (n = 14). Four studies included cancer patients, three studies stroke patients, and two studies PCF with chronic conditions. However, studies could include multiple diseases. See Table 1 for a summary of all diseases. Care tasks were only described in four studies and ranged from medication control,^21–23 feeding,^22,23 help with body hygiene,^22,23 and physical mobility training²⁴ to financial management^21,23 as well as transportation.^21,23

Burden and support factors

Burden and support factors of ICs regarding the caregiving situation of ICs, social factors impacted by the restrictions due to the COVID-19 pandemic, mental and physical health as well as personal characteristics of the ICs were evaluated in 41 studies.

Caregiving

Mentioned burdens regarding caregiving were cohabitating with the PCF,^10,19,22,25 coordination of children/family and PCF,^4,12,14,26 and intense caring hours.^15,27,28 Further, no experiences in care work²⁹ and no assistance from formal care institutions in general³⁰ were reported as burdensome.

However, ICs also identified several support factors that facilitated their caregiving responsibilities. Formal assistance with care tasks was beneficial,^{12,19,21,24,31–33} as was support from healthcare providers, including home medical services^15,19,24,29 and respite care.^19,29,34 Financial support also played a crucial role^19,21 along with practical assistance such as meal delivery and transportation services.¹⁹ Additionally, caregivers reported that engaging in leisure time activities with the PCF, rather than solely focusing on caregiving duties was beneficial.^29,35 Additional support factors that helped with caregiving were self-care and brief leisure time activities such as listening to music, reading, or watching TV.^12,29,33

Changes in caregiving

In general, changes in the caregiving routine that were not further specified were described as burdening.^{13,15,16,23,33,36,37} In studies where changes in the caregiving routine were specified, the deprivation of support from healthcare services for instance, closing of daycare centers or discontinuation of formal care support, were described most frequently.^{9,11–13,19,24,31–34,36,38} Also, the increase in caregiving hours due to the pandemic was reported consistently.^{10,13,16,19,24,28,30–32,37,39} Furthermore, home confinement^13,14 and lockdowns^13,40 were stated as burden factors. Participants also reported that it was more challenging to receive medication and supplies for caring.^9,41 Participants in one study also mentioned that it was more difficult to obtain food.⁹ Coordination of teleworking and informal care work,³¹ reduction in leisure time activities,⁴² limited personal time for ICs themselves,¹⁴ and a lack of recovery time²⁹ were also described as burdening. For some ICs, taking on care responsibilities was a new experience, as they had not done this before the pandemic but had to step in due to the reduction or shutdown of healthcare services.²⁹ Some participants reported feeling threatened to acquiring illness or COVID-19 while caring or that the PCF gets infected with COVID-19.^{11,12,23,29,33,39,41,43} Caring during the pandemic was perceived as more stressful and complex in general compared to before the onset of COVID-19.^11,26

Only one supporting factor for changes in care could be identified, namely the development of a fixed new routine taking into account the changes caused by the pandemic.¹²

Social factors

A major social burden was social isolation and feelings of loneliness,^{26,29,31,33,35,36,44,45} decrease of social contact due to COVID-19 restrictions,^9,32,41,42 and little or no social support for informal care work.^{13,15,21,24,37} Further negative effects of social restrictions were reduced assistance from family and friends.^25,37Additionally, some ICs experienced feelings of being undervalued.³⁶ Concerning support factors, social support by family members, friends, and IC support networks were most frequently mentioned (n = 11).^{9,11,12,19,29,34,36,38–40,46} Also, technology-based social activities, such as online cooking classes, were identified as supportive resources.^20,23,25 Furthermore, using social media and digital health resources, for example, health information via an app was described as beneficial.⁹

Mental health

Mental health of ICs was investigated in all included studies. Especially the increase of depression,^15,25,32,47 stress symptoms,^{9,28,29,32,41,42,48} and overall poor mental health^{4,9,10,12,14,24,27,32,37,39,40,47,49,50} were found frequently. Notably, in some studies female ICs showed worse symptoms compared to male ICs.^{4,10,21,23,24,27,50}

Factors related to worsening mental health were evaluated in nine studies. Changes in the caregiving routine and lack of social support were predictors of emotional distress.³⁷ Higher depression and anxiety symptoms were connected with changes in the caregiving routine, little external support, cohabitating with the PCF, and increase of caregiving hours.^10,15,25,51 A positive relation was found between social support and mental health.³⁹ Further, having higher resilience,²⁸ resourcefulness,⁴⁸ higher sense of life being worthwhile because of informal care work,⁴⁷ and psychological help²¹ were perceived as beneficial for mental health.

Physical health

Seven studies observed a decrease in overall physical health of ICs^{9,11,19,21,40} as well as increased fatigue²⁹ and exhaustion.³⁶ Further, time constraints fostering own physical health was perceived as burdening,³⁸ whereas physical activity was perceived as beneficial.^12,50

Personal characteristics

ICs with lower socioeconomic status and financial difficulties were particularly negatively affected by the collateral effects of the COVID-19 pandemic.^{4,21,25–27,44} Also, participants who were unemployed or faced employment changes^{14,21,25,27,48} and older ICs^40,44,51 were more likely to be affected. A very consistent important result is that eight studies described female ICs to be more burdened than male ICs.^{4,10,23,24,27,32,44,50} Additionally, one study found that Black Non-Hispanic and Hispanic individuals experienced poorer mental health outcomes compared to other demographic groups.⁴⁹ Further factors negatively affecting ICs included concerns about infecting the PCF with COVID-19^{11,16,23,29,39,48} and insufficient technical knowledge of digital devices.³⁶ For a detailed overview of burden and support factors, see Table 1.

Discussion

This scoping review aimed to identify burden and support factors for ICs during and beyond the COVID-19 pandemic. The in the scoping review included 42 studies with overall 51,183 participants highlight the significant caregiving changes g for ICs that happened during and beyond the COVID-19 pandemic. Those changes had a substantial impact on their mental health and led to various burdens. The findings indicate that caregiving challenges existed even before the onset of COVID-19 but pandemic-related factors such as the disruption of healthcare services and restrictions on social interactions further exacerbated these difficulties. However, some studies also identified support factors that helped ICs to handle the burden and find positive aspects throughout their care work.

At the beginning of the COVID-19 pandemic, numerous restrictions were implemented to prevent the spread of the COVID-19 virus. The loss of support from social institutions and healthcare services significantly increased caregiving hours as ICs took on tasks previously handled by formal care providers. Social and formal care restrictions as well as home confinements contributed to a heightened caregiving burden and were strongly linked to increased depression and anxiety.¹⁵ This highlights the critical need to maintain formal healthcare services during pandemics while ensuring compliance with pandemic safety requirements.

During the pandemic, maintaining these formal healthcare services that met pandemic safety requirements was partly possible with various digital tools such as online support groups, social media, or caregiver information networks.^9,19 These resources facilitated social support and helped ICs access necessary care-related information. However, many ICs were also unprepared to substitute tasks that were previously handled by healthcare services.^11,13 Notably, only one study addressed the role of caregiver education and training.¹⁹ Future efforts should therefore prioritize expanding online support networks and developing accessible digital education and training programs to reduce social isolation and improve caregivers’ preparedness.

Contrasting results were found regarding cohabitating of ICs and PCF. Caregiving for a non-cohabitating person was perceived as burdensome in one study. Participants described that caring in general and long drives from the home of the PCF to the hospital were aggravated by living further apart. Additional factors, such as lockdown measures and advanced caregiver age, contributed to the challenges of caring for someone outside the household.⁴⁰ Conversely, other studies described cohabitation with the PCF as a significant stressor,^10,19,25,51 which could be linked to increased care hours and less time for carers themselves due to living in the same household. These findings suggest that both caregiving arrangements present unique challenges, depending on the surrounding circumstances.

The strong emphasis on mental health outcomes in all studies highlights the growing concern of caregiver burden and its direct impact on ICs’ health. A key factor contributing to caregiver burden is poor mental health, which has been particularly prevalent among female ICs and is in line with previous research.⁵² While mental health challenges already existed before the pandemic, they were aggravated by its consequences.³⁵ Since some studies suggest that mental health outcomes were positively connected with higher resilience, social networks, and assistance from healthcare services, it is essential to raise awareness for ICs’ mental health. Future efforts should focus on expanding digital resilience-enhancing programs and other mental health interventions as well as strengthening (online) social support systems.

Especially notable is that ICs are mostly female. Only four studies reported an equal distribution of male and female participants or even a higher distribution of male ICs.^14–17 Caregiving as a stereotypically female activity is a well-documented societal pattern.⁵³ Already previous research indicated that female ICs are more likely to experience caregiver burden and poorer mental health compared to their male counterparts, which is, for example, reflected in higher depression rates.⁵⁴ One possible factor is that women often have to simultaneously manage caregiving responsibilities, employment, and childcare. All of which are challenges that were further intensified by COVID-19-related restrictions such as daycare closures, home confinement, and teleworking.^4,12,14,26 The gender imbalance in the included studies aligns with global caregiving trends⁵³ and is a common phenomenon. While gender disparities in caregiving have narrowed over the past generation, evidence suggests that women continue to face disproportionate negative consequences from these responsibilities.⁵² To ensure equity, researchers must be mindful of potential biases when designing caregiver education programs and strive to make study protocols and support initiatives inclusive of all genders.

A further prominent factor is that more studies in the review identified burden-related aspects than supporting factors. Future research should provide equal attention to support factors to develop interventions that better address the needs of ICs and improve their caregiving conditions.

Limitations

There is a possibility that literature was missed with the search strategy described above, which could have resulted in a lack of recognition of key themes or gaps. However, the search strategy was discussed thoroughly with all authors. Trained librarians were consulted to build a search strategy that minimizes the possibility of missing literature. A further limitation is that the present review only included articles in English and German language. Articles in other languages could have provided more extensive results. Lastly, the present review did not conduct a quality assessment of the reviewed studies.

Conclusion

The COVID-19 pandemic led to significant disruptions in caregiving routines, placing an increased burden on ICs as they faced heightened responsibilities with limited external support. This highlights the urgent need for greater recognition of ICs’ workload and the implementation of more comprehensive support systems to prepare for future pandemics. Public health measures need to consider both restrictions to contain the spread of a virus and the maintenance of essential care support services to prevent caregiver burden as well as physical and mental morbidity in ICs who represent an essential part of care work. A well-structured approach that integrates digital solutions with sustained formal caregiving support is essential to maintain the well-being of ICs in future pandemics.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524251399233 – Supplemental material for Unraveling the complexities: A scoping review of the collateral effects on informal caregivers during and beyond the COVID-19 pandemic

Supplemental material, sj-docx-1-pcr-10.1177_26323524251399233 for Unraveling the complexities: A scoping review of the collateral effects on informal caregivers during and beyond the COVID-19 pandemic by Miriam Nicolai, Anneke Ullrich, Jessica Ruck, Birgit Jaspers, Arndt Bialobrzeski, Rebecca Degutsch, Karin Oechsle, Lukas Radbruch, Ildiko Gágyor and Nora Hettich-Damm in Palliative Care and Social Practice

Footnotes

Acknowledgements

We acknowledge Univ.-Prof. Dr. Nicole Skoetz and Caroline Hirsch, MSc for their extensive consulting regarding the search procedure in the present scoping review.

ORCID iDs

Miriam Nicolai

Arndt Bialobrzeski

Rebecca Degutsch

Author contributions

Miriam Nicolai: Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Resources; Software; Supervision; Validation; Visualization; Writing – original draft; Writing – review & editing.

Anneke Ullrich: Methodology; Writing – review & editing.

Jessica Ruck: Methodology; Writing – review & editing.

Birgit Jaspers: Methodology; Project administration; Writing – review & editing.

Arndt Bialobrzeski: Project administration; Writing – review & editing.

Rebecca Degutsch: Project administration; Writing – review & editing.

Karin Oechsle: Conceptualization; Writing – review & editing.

Lukas Radbruch: Conceptualization; Methodology; Project administration; Supervision; Writing – review & editing.

Ildiko Gágyor: Conceptualization; Project administration; Supervision; Writing – review & editing.

Nora Hettich-Damm: Conceptualization; Investigation; Methodology; Supervision; Writing – original draft; Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The present scoping review was conducted as part of the CollPan (Collateral Effects in Pandemics) project which was conducted within the scope of the Netzwerk Universitätsmedizin (NUM 2.0) and was funded by the Federal Ministry of Education and Research (Bundesministerium für Bildung und Forschung, BMBF; funding code: 01KX2121).

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Not applicable.

Disclaimer

The views expressed in the submitted scoping review are the authors’ own and not an official position of the institution or funder.

Supplemental material

Supplemental material for this article is available online.

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