Towards conceptual convergence: A systematic review of psychological resilience in family caregivers of persons living with chronic neurological conditions

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Abstract

Background

The demand for family caregiving in persons with chronic neurological conditions (CNCs) is increasing. Psychological resilience may empower and protect caregivers in their role. Thus, a synthesis of resilience evidence within this specific population is warranted.

Aim

In this systematic review we aimed to: (1) examine the origins and conceptualizations of resilience; (2) summarize current resilience measurement tools; and (3) synthesize correlates, predictors and outcomes of resilience in family caregivers of persons with CNCs.

Design

We sourced English articles published up to July 2020 across five databases using search terms involving CNCs, family caregivers and resilience.

Results

A total of 50 studies were retained. Nearly half (44%) of the studies used trait‐based resilience definitions, while about one third (36%) used process‐based definitions. Twelve different resilience scales were used, revealing mostly moderate to high‐resilience levels. Findings confirmed that resilience is related to multiple indicators of healthy functioning (e.g., quality of life, social support, positive coping), as it buffers against negative outcomes of burden and distress. Discordance relating to the interaction between resilience and demographic, sociocultural and environmental factors was apparent.

Conclusions

Incongruity remains with respect to how resilience is defined and assessed, despite consistent definitional concepts of healthy adaptation and equilibrium. The array of implications of resilience for well‐being confirms the potential for resilience to be leveraged within caregiver health promotion initiatives via policy and practice.

Patient or Public Contribution

The findings may inform future recommendations for researchers and practitioners to develop high‐quality resilience‐building interventions and programmes to better mobilize and support this vulnerable group.

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Most cited references 107

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Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement

David Moher, Larissa Shamseer, Mike Clarke … (2017)

Systematic reviews should build on a protocol that describes the rationale, hypothesis, and planned methods of the review; few reviews report whether a protocol exists. Detailed, well-described protocols can facilitate the understanding and appraisal of the review methods, as well as the detection of modifications to methods and selective reporting in completed reviews. We describe the development of a reporting guideline, the Preferred Reporting Items for Systematic reviews and Meta-Analyses for Protocols 2015 (PRISMA-P 2015). PRISMA-P consists of a 17-item checklist intended to facilitate the preparation and reporting of a robust protocol for the systematic review. Funders and those commissioning reviews might consider mandating the use of the checklist to facilitate the submission of relevant protocol information in funding applications. Similarly, peer reviewers and editors can use the guidance to gauge the completeness and transparency of a systematic review protocol submitted for publication in a journal or other medium.

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Development of a new resilience scale: the Connor-Davidson Resilience Scale (CD-RISC).

Kathryn M Connor, Jonathan Davidson (2003)

Resilience may be viewed as a measure of stress coping ability and, as such, could be an important target of treatment in anxiety, depression, and stress reactions. We describe a new rating scale to assess resilience. The Connor-Davidson Resilience scale (CD-RISC) comprises of 25 items, each rated on a 5-point scale (0-4), with higher scores reflecting greater resilience. The scale was administered to subjects in the following groups: community sample, primary care outpatients, general psychiatric outpatients, clinical trial of generalized anxiety disorder, and two clinical trials of PTSD. The reliability, validity, and factor analytic structure of the scale were evaluated, and reference scores for study samples were calculated. Sensitivity to treatment effects was examined in subjects from the PTSD clinical trials. The scale demonstrated good psychometric properties and factor analysis yielded five factors. A repeated measures ANOVA showed that an increase in CD-RISC score was associated with greater improvement during treatment. Improvement in CD-RISC score was noted in proportion to overall clinical global improvement, with greatest increase noted in subjects with the highest global improvement and deterioration in CD-RISC score in those with minimal or no global improvement. The CD-RISC has sound psychometric properties and distinguishes between those with greater and lesser resilience. The scale demonstrates that resilience is modifiable and can improve with treatment, with greater improvement corresponding to higher levels of global improvement. Copyright 2003 Wiley-Liss, Inc.

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Global, regional, and national burden of neurological disorders, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016

Valery L. Feigin, Emma Nichols, Tahiya Alam … (2020)

Summary Background Neurological disorders are increasingly recognised as major causes of death and disability worldwide. The aim of this analysis from the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2016 is to provide the most comprehensive and up-to-date estimates of the global, regional, and national burden from neurological disorders. Methods We estimated prevalence, incidence, deaths, and disability-adjusted life-years (DALYs; the sum of years of life lost [YLLs] and years lived with disability [YLDs]) by age and sex for 15 neurological disorder categories (tetanus, meningitis, encephalitis, stroke, brain and other CNS cancers, traumatic brain injury, spinal cord injury, Alzheimer's disease and other dementias, Parkinson's disease, multiple sclerosis, motor neuron diseases, idiopathic epilepsy, migraine, tension-type headache, and a residual category for other less common neurological disorders) in 195 countries from 1990 to 2016. DisMod-MR 2.1, a Bayesian meta-regression tool, was the main method of estimation of prevalence and incidence, and the Cause of Death Ensemble model (CODEm) was used for mortality estimation. We quantified the contribution of 84 risks and combinations of risk to the disease estimates for the 15 neurological disorder categories using the GBD comparative risk assessment approach. Findings Globally, in 2016, neurological disorders were the leading cause of DALYs (276 million [95% UI 247–308]) and second leading cause of deaths (9·0 million [8·8–9·4]). The absolute number of deaths and DALYs from all neurological disorders combined increased (deaths by 39% [34–44] and DALYs by 15% [9–21]) whereas their age-standardised rates decreased (deaths by 28% [26–30] and DALYs by 27% [24–31]) between 1990 and 2016. The only neurological disorders that had a decrease in rates and absolute numbers of deaths and DALYs were tetanus, meningitis, and encephalitis. The four largest contributors of neurological DALYs were stroke (42·2% [38·6–46·1]), migraine (16·3% [11·7–20·8]), Alzheimer's and other dementias (10·4% [9·0–12·1]), and meningitis (7·9% [6·6–10·4]). For the combined neurological disorders, age-standardised DALY rates were significantly higher in males than in females (male-to-female ratio 1·12 [1·05–1·20]), but migraine, multiple sclerosis, and tension-type headache were more common and caused more burden in females, with male-to-female ratios of less than 0·7. The 84 risks quantified in GBD explain less than 10% of neurological disorder DALY burdens, except stroke, for which 88·8% (86·5–90·9) of DALYs are attributable to risk factors, and to a lesser extent Alzheimer's disease and other dementias (22·3% [11·8–35·1] of DALYs are risk attributable) and idiopathic epilepsy (14·1% [10·8–17·5] of DALYs are risk attributable). Interpretation Globally, the burden of neurological disorders, as measured by the absolute number of DALYs, continues to increase. As populations are growing and ageing, and the prevalence of major disabling neurological disorders steeply increases with age, governments will face increasing demand for treatment, rehabilitation, and support services for neurological disorders. The scarcity of established modifiable risks for most of the neurological burden demonstrates that new knowledge is required to develop effective prevention and treatment strategies. Funding Bill & Melinda Gates Foundation.

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Author and article information

Contributors

Afolasade Fakolade:

ORCID: https://orcid.org/0000-0003-3405-5782

Role: Assistant Professor

Nigèle Langlois:

ORCID: https://orcid.org/0000-0002-4540-3861

Role: Research Librarian

Lara A. Pilutti:

ORCID: https://orcid.org/0000-0002-3074-4903

Role: Associate Professorlpilutti@uottawa.ca

Journal

Journal ID (nlm-ta): Health Expect

Journal ID (iso-abbrev): Health Expect

Journal ID (doi): 10.1111/(ISSN)1369-7625

Journal ID (publisher-id): HEX

Title: Health Expectations : An International Journal of Public Participation in Health Care and Health Policy

Publisher: John Wiley and Sons Inc. (Hoboken )

ISSN (Print): 1369-6513

ISSN (Electronic): 1369-7625

Publication date (Electronic): 22 October 2021

Publication date (Print): February 2022

Volume: 25

Issue: 1 ( doiID: 10.1111/hex.v25.1 )

Pages: 4-37

Affiliations

[ ¹ ] Interdisciplinary School of Health Sciences, Faculty of Health Sciences University of Ottawa Ottawa Canada

[ ² ] School of Rehabilitation Therapy Queen's University Kingston Canada

[ ³ ] Health Sciences Library University of Ottawa Ottawa Canada

[ ⁴ ] Faculty of Health Sciences McMaster University Hamilton Canada

[ ⁵ ] Brain and Mind Research Institute, Faculty of Medicine University of Ottawa Ottawa Canada

Author notes

[*] [* ] Correspondence Lara A. Pilutti, Associate Professor, Interdisciplinary School of Health Sciences, Faculty of Health Sciences, University of Ottawa, 200 Lees Ave E250G, Ottawa K1N 6N5, Canada.

Email: lpilutti@ 123456uottawa.ca

Author information

Odessa McKenna http://orcid.org/0000-0002-3670-1867

Afolasade Fakolade https://orcid.org/0000-0003-3405-5782

Katherine Cardwell https://orcid.org/0000-0002-1925-8509

Nigèle Langlois https://orcid.org/0000-0002-4540-3861

Lara A. Pilutti https://orcid.org/0000-0002-3074-4903

Article

Publisher ID: HEX13374

DOI: 10.1111/hex.13374

PMC ID: 8849377

PubMed ID: 34676951

SO-VID: a6a11571-e895-4df8-abcf-5f3cba751de1

License:

This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

History

Date revision received : 31 August 2021

Date received : 02 June 2021

Date accepted : 17 September 2021

Page count

Figures: 1, Tables: 5, Pages: 34, Words: 15594

Funding

Funded by: None.

Custom metadata

source-schema-version-number 2.0

cover-date February 2022

details-of-publishers-convertor Converter:WILEY_ML3GV2_TO_JATSPMC version:6.1.1 mode:remove_FC converted:16.02.2022

ScienceOpen disciplines: Health & Social care

Keywords: chronic neurological conditions,dementia,family caregivers,resilience,systematic review

Data availability:

ScienceOpen disciplines: Health & Social care

Keywords: chronic neurological conditions, dementia, family caregivers, resilience, systematic review

Towards conceptual convergence: A systematic review of psychological resilience in family caregivers of persons living with chronic neurological conditions

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Abstract

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Patient or Public Contribution

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Tobacco Prevention & Cessation

Most cited references 107

Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement

Development of a new resilience scale: the Connor-Davidson Resilience Scale (CD-RISC).

Global, regional, and national burden of neurological disorders, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016

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