Health-related quality of life in caregivers of community-dwelling individuals with disabilities or chronic conditions. A gender-differentiated analysis in a cross-sectional study

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Abstract

Background

Most care for people with chronic or disabling conditions living in the community is provided in the family context, and this care is traditionally provided by women. Providing informal care has a negative impact on caregivers’ quality of life, which adds to existing health inequalities associated with gender. The aim of this study was to analyze factors associated with the health-related quality of life of caregivers and to determine their differences in a gender-differentiated analysis.

Methods

An observational, cross-sectional, multicenter study was conducted in primary healthcare. A total of 218 caregivers aged 65 years or older were included, all of whom assumed the primary responsibility for caring for people with disabling conditions for at least 6 months per year and agreed to participate in the CuidaCare study. The dependent variable was health-related quality of life, assessed with the EQ-5D. The explanatory variables tested were grouped into sociodemographic variables, subjective burden, caregiving role, social support and variables related to the dependent person. The associations between these variables and health-related quality of life were estimated by fitting robust linear regression models. Separate analyses were conducted for women and men.

Results

A total of 72.8% of the sample were women, and 27.2% were men. The mean score on the EQ-5D for female caregivers was 0.64 (0.31); for male caregivers, it was 0.79 (0.23). There were differences by gender in the frequency of reported problems in the dimensions of pain/comfort and anxiety/depression. The variables that were associated with quality of life also differed. Having a positive depression screening was negatively associated with quality of life for both genders: -0.31 points (95% CI: -0.47; -0.15) for female caregivers and -0.48 points (95% CI: -0.92; -0.03) for male caregivers. Perceived burden was associated with quality of life in the adjusted model for women (-0.12 points; 95% CI: -0.19; -0.06), and domestic help was associated in the adjusted model for male caregivers (-0.12 points; 95% CI: -0.19; -0.05).

Conclusions

Gender differences are present in informal caregiving. The impact of providing informal care is different for male and female caregivers, and so are the factors that affect their perceived quality of life. It could be useful it incorporates a gender perspective in the design of nursing support interventions for caregivers to individualize care and improve the quality of life of caregivers.

Trial registration

NCT 01478295 [ https://ClinicalTrials.gov]. 23/11/2011.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12912-022-00845-x.

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Most cited references 37

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Psychosocial impact of COVID-19

Souvik Dubey, Payel Biswas, Ritwik Ghosh … (2020)

Background Along with its high infectivity and fatality rates, the 2019 Corona Virus Disease (COVID-19) has caused universal psychosocial impact by causing mass hysteria, economic burden and financial losses. Mass fear of COVID-19, termed as “coronaphobia”, has generated a plethora of psychiatric manifestations across the different strata of the society. So, this review has been undertaken to define psychosocial impact of COVID-19. Methods Pubmed and GoogleScholar are searched with the following key terms- “COVID-19”, “SARS-CoV2”, “Pandemic”, “Psychology”, “Psychosocial”, “Psychitry”, “marginalized”, “telemedicine”, “mental health”, “quarantine”, “infodemic”, “social media” and” “internet”. Few news paper reports related to COVID-19 and psychosocial impacts have also been added as per context. Results Disease itself multitude by forced quarantine to combat COVID-19 applied by nationwide lockdowns can produce acute panic, anxiety, obsessive behaviors, hoarding, paranoia, and depression, and post-traumatic stress disorder (PTSD) in the long run. These have been fueled by an “infodemic” spread via different platforms social media. Outbursts of racism, stigmatization, and xenophobia against particular communities are also being widely reported. Nevertheless, frontline healthcare workers are at higher-risk of contracting the disease as well as experiencing adverse psychological outcomes in form of burnout, anxiety, fear of transmitting infection, feeling of incompatibility, depression, increased substance-dependence, and PTSD. Community-based mitigation programs to combat COVID-19 will disrupt children's usual lifestyle and may cause florid mental distress. The psychosocial aspects of older people, their caregivers, psychiatric patients and marginalized communities are affected by this pandemic in different ways and need special attention. Conclusion For better dealing with these psychosocial issues of different strata of the society, psychosocial crisis prevention and intervention models should be urgently developed by the government, health care personnel and other stakeholders. Apt application of internet services, technology and social media to curb both pandemic and infodemic needs to be instigated. Psychosocial preparedness by setting up mental organizations specific for future pandemics is certainly necessary.

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Informal caregiving and its impact on health: a reappraisal from population-based studies.

David Roth, Lisa Fredman, William E Haley (2015)

Considerable research and public discourse on family caregiving portrays it as a stressful and burdensome experience with serious negative health consequences. A landmark study by Schulz and Beach that reported higher mortality rates for strained spouse caregivers has been widely cited as evidence for the physical health risks of caregiving and is often a centerpiece of advocacy for improved caregiver services. However, 5 subsequent population-based studies have found reduced mortality and extended longevity for caregivers as a whole compared with noncaregiving controls. Most caregivers also report benefits from caregiving, and many report little or no caregiving-related strain. Policy reports, media portrayals, and many research reports commonly present an overly dire picture of the health risks associated with caregiving and largely ignore alternative positive findings. As the pool of traditional family caregivers declines in the coming years, a more balanced and updated portrayal of the health effects of caregiving is needed to encourage more persons to take on caregiving roles, and to better target evidence-based services to the subgroup of caregivers who are highly strained or otherwise at risk. Recommendations are discussed for research that will better integrate and clarify both the negative and potential positive health effects of informal caregiving.

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Living with dementia: increased level of caregiver stress in times of COVID-19

Gabriela Cohen, María Julieta Russo, Jorge A. Campos … (2020)

COVID-19 pandemic in Argentina has affected the care of older adults with dementia deeply. Our objective was to study how the obligatory social isolation affected stress caregiver and burden of care of family members of subjects living with dementia in the community after the initial 4 weeks of quarantine in our setting. We did a questionnaire survey among 80 family caregivers of persons with Alzheimer’s disease (AD) or related dementia collected on April 2020. We designed a visual analog scale to test the level of the burden of care. Characteristics of people with dementia and their caregivers were analyzed with descriptive (mean, standard deviation, frequency and percent) and inferential statistics (chi-square test). The sample included older adults (mean age: 80.51 ± 7.65) with different stages of dementia. Family was the primary provider of care in 65%. Overall, COVID-19 confinement increased stress caregiver independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease. Other findings were that half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies. Family members’ main concerns were for severe dementia cases, fear of absence of the paid caregiver during the epidemic, and for mild cases fear of spreading the disease while assisting patients with instrumental activities. A partnership between departments of public health, care workers and families must be planned to guarantee continuity of care during these unique COVID-19 times.

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Author and article information

Contributors

Milagros Rico-Blázquez: milagros.rico@salud.madrid.org

Journal

Journal ID (nlm-ta): BMC Nurs

Journal ID (iso-abbrev): BMC Nurs

Title: BMC Nursing

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-6955

Publication date (Electronic): 29 March 2022

Publication date PMC-release: 29 March 2022

Publication date Collection: 2022

Volume: 21

Electronic Location Identifier: 69

Affiliations

[1 ]GRID grid.410361.1, ISNI 0000 0004 0407 4306, Research Unit, Primary Care Assistance Management, Madrid Health Service, ; Madrid, Spain

[2 ]GRID grid.413448.e, ISNI 0000 0000 9314 1427, Health Services Research On Chronic Patients Network (REDISSEC) and Research Network On Chronicity, , Primary Health Care and Health Promotion (RICORS-RICAPPS), Instituto de Salud Carlos III, ; Madrid, Spain

[3 ]Gregorio Marañon Health Research Institute, Madrid Health Service, Madrid, Spain

[4 ]GRID grid.28479.30, ISNI 0000 0001 2206 5938, Doctoral Program in Epidemiology and Public Health (Interuniversity), , Rey Juan Carlos University, ; Madrid, Spain

[5 ]GRID grid.4795.f, ISNI 0000 0001 2157 7667, Nursing Department, Faculty of Nursing, Physiotherapy and Podiatry, , Complutense University of Madrid, ; Madrid, Spain

[6 ]GRID grid.410526.4, ISNI 0000 0001 0277 7938, Independent researcher, Preventive Medicine and Quality Management Service, , Gregorio Marañón General University Hospital, ; Madrid, Spain

[7 ]GRID grid.28479.30, ISNI 0000 0001 2206 5938, Preventive Medicine and Public Health Area, Health Sciences Faculty, , Rey Juan Carlos University, ; Alcorcón, Madrid, Spain

[8 ]GRID grid.410361.1, ISNI 0000 0004 0407 4306, Goya Healthcare Center, Primary Care Assistance Management, Madrid Health Service, ; Madrid, Spain

[9 ]GRID grid.418921.7, ISNI 0000 0001 2348 8190, Foundation for Biosanitary Research and Innovation in Primary Care of the Community of Madrid (FIIBAP), PEJD-2018-PRE / BMD-9460, ; Madrid, Spain

[10 ]GRID grid.410361.1, ISNI 0000 0004 0407 4306, Primary Care Assistance Management, , Madrid Health Service, ; Madrid, Spain

Article

Publisher ID: 845

DOI: 10.1186/s12912-022-00845-x

PMC ID: 8961096

PubMed ID: 34983509

SO-VID: ba86a6ce-e332-4fe7-b219-94692f1a1f16

License:

Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 23 November 2021

Date accepted : 14 March 2022

Funding

Funded by: Comisión Europea Regional Fondo de Desarrollo (FEDER) “Una forma de dar forma a Europa”. Plan Nacional I+D+I 2008-2011

Funded by: Foundation for Biosanitary Research and Innovation in Primary Care of the Community of Madrid (FIIBAP)

Funded by: Fondo de Investigaciones Sanitarias of the Instituto de Salud Carlos III

Award ID: PI11/02132

Custom metadata

ScienceOpen disciplines: Nursing

Keywords: quality of life,gender roles,caregivers,informal care,primary health care,chronic disease,disabled persons

Data availability:

ScienceOpen disciplines: Nursing

Keywords: quality of life, gender roles, caregivers, informal care, primary health care, chronic disease, disabled persons

Health-related quality of life in caregivers of community-dwelling individuals with disabilities or chronic conditions. A gender-differentiated analysis in a cross-sectional study

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Abstract

Background

Methods

Results

Conclusions

Trial registration

Supplementary Information

Related collections

International Journal of Applied Technology in Medical Sciences

Most cited references 37

Psychosocial impact of COVID-19

Informal caregiving and its impact on health: a reappraisal from population-based studies.

Living with dementia: increased level of caregiver stress in times of COVID-19

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