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

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

Abstract

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

research_questionIn 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.

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

content_tagsA total of 50 studies were retained. content_tagsNearly half (44%) of the studies used trait‐based resilience definitions, while about one third (36%) used process‐based definitions. content_tagsTwelve different resilience scales were used, revealing mostly moderate to high‐resilience levels. mechanisms↗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.

contributionIncongruity 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.

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.

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

INTRODUCTION

Chronic neurological conditions (CNCs) represent the leading cause of disability and the second most common cause of death worldwide. 1 content_tagsGlobally, it is estimated that approximately one billion people, roughly one in six of the world's total population, are currently living with a CNC. 1 content_tags↗Depending on their origin and aetiology, CNCs are typically divided into four groups: (1) sudden‐onset conditions (e.g., acquired brain injury [ABI], spinal cord injury [SCI], traumatic brain injury [TBI]); (2) intermittent conditions (e.g., epilepsy); (3) progressive conditions (e.g., dementia, multiple sclerosis [MS], Parkinson's disease [PD], motor neuron disease [MND] and other neurodegenerative disorders); and (4) stable with/without age‐related degeneration (e.g., polio or cerebral palsy). 2

CNCs have an enduring time course and are associated with various complex symptoms, including cognitive impairments, behavioural and psychological problems and marked physical deficits. 2 , 3 Neurological symptoms and their accompanying disability present challenges for the individual, as independence, functioning and the ability to manage life roles (e.g., employment) are limited. For instance, studies of progressive CNCs (e.g., MS and PD) have reported that the challenges associated with disability management contribute to increased unemployment rates. 4 These findings reflect limitations in the ability to perform occupational and social roles within affected populations. 4 , 5 , 6

CNC‐related disability results in many persons with these conditions requiring support from others to carry out in‐home tasks of everyday living. 7 , 8 , 9 , 10 concepts↗This role is typically fulfilled by an informal caregiver—an individual responsible for providing unpaid care for family members or close friends. 11 Caregivers often experience role overload, financial strain and are unequipped to provide complex support for their care recipients. 8 , 12 The extent of this ongoing commitment can culminate in adverse mental and physical health outcomes. 12 , 13 concepts↗For family caregivers of persons with CNCs, the caregiving role may contribute to increased stress, depression, anxiety, social isolation and poorer reported quality of life in comparison to the general noncaregiving population. 13 , 14 , 15 , 16 This phenomenon is referred to as caregiver burden . 17

Indeed, depleted caregiver well‐being, or burden, impacts the caregiver's ability to provide sufficient support, and is further linked to increased rates of institutionalization of people living with CNCs. 18 Nevertheless, the experience of caring for a loved one with a CNC is broad, dynamic and rarely uniform. 19 Despite facing difficulties, some caregivers experience fewer caregiving consequences, and report rewarding and fulfilling aspects of providing care (e.g., personal growth, strengthening of relationships, enhanced compassion) 20 , 21 and positive health outcomes (e.g., reduced depressive symptoms). 22 , 23 Such variability in experience suggests that not all caregivers are harrowed by burden, and that certain caregivers are better equipped to succeed in their role than others. Thus, further exploration of protective strategies that may buffer against the negative effects of burden is needed, and this review seeks to address this gap in knowledge.

concepts↗To account for this variability, research in the caregiving field is becoming increasingly focused on a protective construct—resilience—which, when described briefly, denotes caregivers' ability to adapt to the physical and psychological requirements of their role. 24 , 25 concepts↗unhoused_relationsThis transition echoes a paradigm shift in research from a burden‐centred caregiving model to a strengths‐based model that fixates on healthy development in spite of health risks. 26 , 27 Still, there remains ample debate in the literature regarding how psychological resilience is defined. concepts↗Traditionally, trait definitions are used to conceptualize resilience, whereby researchers illustrate resilience as a fixed personal attribute or inherent ability. 28 , 29 , 30 This distinction suggests that resilience is stable and unmalleable across the life span. 30 concepts↗More recently, scholars have investigated the adaptive mechanisms underlying resilience, conceptualizing resilience as a dynamic process . 29 Defining resilience as an adaptive process accepts that resilience may fluctuate in the face of different challenges and stages of the life course and, in turn, is modifiable. 30 , 31 claim_relationscontent_tags↗To further apprise the debate encircling resilience, Windle 29 conducted an extensive review of over 270 resilience‐related studies, generating the following definition: ‘Resilience is the process of negotiating, managing and adapting to significant sources of stress or trauma. Assets and resources within the individual, their life and environment facilitate this capacity for adaptation and “bouncing back” in the face of adversity. Across the life course, the experience of resilience will vary’.

Evaluation of interventions and policies intended to foster resilience is dependent upon reliable and validated measures. As a reflection of the ambiguity of the resilience construct, a number of resilience measures are available, with minimal progress towards a standardized measure for broad applications. 32 , 33 , 34 A methodological review of 15 resilience scales determined that the Connor–Davidson Resilience Scale (CD‐RISC), 32 the Resilience Scale for Adults (RSA) 35 and the Brief Resilience Scale (BRS) 36 obtained the highest ratings among authors, despite quality and psychometric deficiencies. 33 Most scales reflect the availability of assets that contribute to resilience (e.g., CD‐RISC) 37 or evaluate resilience as an outcome of the capacity to ‘bounce back’ (e.g., BRS). 33 , 34 Presently, few measures are available that account for the complexity of resilience from a multilevel and temporal perspective. 33 With limited access to quality scales developed for use in the general adult population, researchers lack robust evidence to inform their choice of resilience measure for differing target populations and contexts. 33

concepts↗To understand caregiving challenges and the mechanisms by which resilience operates within the caregiving context, multiple studies 25 , 38 , 39 have used the Ecological Model of Resilience. 31 This model suggests that resilience operates fluidly across multiple interrelated levels including individual, community and society. 31 This model identifies resources and assets, existent within each of these levels, that may enhance caregiver risk or, alternatively, act to foster resilience. 31 More recently, O'Dwyer et al. 40 proposed a model of resilience in caregivers that conceptualizes resilience as a cyclical process, accounting for the subjective experience of adversity, with varying progressions and magnitudes.

Dissonance persists in the resilience and caregiving literature. A qualitative study among dementia caregivers found that caregivers did not agree on whether resilience was a trait or process, nor could they concur on the factors associated with resilience and its causal pathways. 40 Similarly, a systematic review outlined mainly individual factors as major components of resilience among dementia caregivers; however, the authors acknowledged that there is no single avenue to increase resilience. 41 A recent systematic review determined that resilience was associated with improved caregiver quality of life and alleviated caregiver burden in end‐of‐life and palliative care contexts, although the authors observed a lack of interest in other psychological aspects that may contribute to resilience. 42

Although the literature supports the notion that a broad range of factors may influence caregiver resilience, the lack of congruence with respect to the conceptualization and measurement of resilience within the literature presents a challenge for future research and practice. 40 Enhancing our understanding of resilience, its measures and associated factors will delineate how resilience capacities may be leveraged and monitored clinically, via intervention, programmes and service development, to better support CNC caregivers in their role. object_of_studyThe objective of this systematic review was to synthesize the current scientific literature on the concept of resilience in CNC family caregivers. We aimed to (1) critically examine origins, theoretical conceptualizations and definitions of resilience; (2) summarize current resilience measurement tools; and (3) synthesize correlates predictors, and outcomes of resilience.

MATERIALS AND METHODS

Our protocol was registered in the PROSPERO database (CRD42020206662). method↗This systematic review was performed in compliance with the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) statement and reporting guidelines. 43

Search strategy and selection

A peer‐reviewed search strategy 44 was developed in consultation with a health sciences librarian (N. L.). Five databases (MEDLINE(R) [Ovid], Embase Classic+Embase [Ovid], PsycINFO, CINAHL [EBSCO] and Web of Science Core Collection) were searched to locate relevant articles published from inception to 27 July 2020. The databases were selected to source peer‐reviewed articles across a variety of disciplines including nursing, medicine, behavioural sciences and multidisciplinary fields. As a result of the degree of novelty of our search concepts, no limits to language or publication date were applied. Searches were limited to ‘human’, where possible. Reference lists were reviewed for additional publications. Relevant search terms were categorized into three distinct themes: CNCs, family caregivers and psychological resilience (see Appendix S1 ).

Eligibility criteria

Following a modified PICO (population, intervention, comparison, outcomes) framework, 45 we included quantitative, qualitative or mixed‐methods studies that focused on psychological resilience among community‐dwelling adult family caregivers (≥18 years old) of adults with CNCs (see Table 1 ). Articles that were not available in English were excluded. We excluded meta‐analyses, dissertations, systematic reviews, case reports, opinion pieces, commentaries and grey literature.

Inclusion and exclusion criteria based on a modified PICO framework 45

Screening process

Retrieved articles were managed using Covidence online systematic review software (Veritas Health Innovation Ltd.). One author (N. L.) ran the initial search, and another (L. P.) merged the results into Covidence, where electronic data could be exported, tracked, deduplicated and managed. A two‐stage screening process was used to determine eligibility for inclusion. Articles were first screened for relevance by title and abstract by three reviewers (O. M., K. C., K. J.), with the intention of retaining only articles that involved resilience (i.e., resilience was directly referred to in the title or abstract). Any articles with ambiguous representations of resilience were conservatively retained to the next level of review. In the second stage, full texts were reviewed based on eligibility criteria. Agreement of two reviewers (O. M. and K. C.) was required for article inclusion at this stage, resulting in 100% interreviewer agreement. Discrepancies between reviewers were resolved by the last author (L. P.).

Data extraction

Data were extracted using an Excel template developed by the research team. The following parameters were extracted: (a) study information (i.e., author, year, country, purpose, design, recruitment setting and sample size); (b) participant characteristics (i.e., age, gender); (c) caregiving context variables (relationship with care recipient, CNC, participant eligibility criteria); and (d) resilience components (operationalized definition of resilience, source of definition, measure of resilience, resilience score, resilience‐related results). Two independent reviewers completed the data extraction (O. M. and K. C.). Once both reviewers completed their respective extractions, the results were compared, and any discrepancies were discussed in detail and clarified in a consensus meeting. If consensus among reviewers was not reached, the final decision was made by the last author (L. P.). The authors of three (6%) studies were contacted for missing resilience score data. 46 , 47 , 48 Of those contacted, we received additional data from the authors of one study. 47

RESULTS

content_tagsFollowing the removal of duplicates ( n = 3835), 7339 studies remained to be screened (Figure 1 ). The title and abstracts of these studies were screened, and 207 articles were subjected to full‐text screening. Following our review, 49 publications fulfilled the inclusion criteria. An additional publication was located by reviewing the reference lists of included articles. Thus, a total of 50 publications were retained. Articles reporting data from the same participant population at different time points are reported together.

PRISMA flow diagram of the study selection process. CNC, chronic neurological condition

Study characteristics and caregiver sample demographics

Study characteristics

Most ( n = 46, 92%) studies were published within the last 10 years of conducting our search (i.e., during or after the year 2010). The majority of studies originated from Europe ( n = 20, 40%) 38 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 and North America ( n = 20, 40%), 19 , 25 , 46 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 followed by Asia ( n = 4, 8%), 83 , 84 , 85 , 86 South America ( n = 4, 8%) 87 , 88 , 89 , 90 and Australia ( n = 2, 4%). 91 , 92 Across studies, the sample size ranged between 18 71 and 691. 80 , 81 Most of the quantitative studies were cross‐sectional ( n = 34, 68%) or longitudinal designs ( n = 1, 2%). Only four studies (8%) were intervention‐based. 70 , 75 , 84 , 85 Seven studies (14%) used a qualitative design involving semi‐structured interviews, 38 , 52 , 53 , 73 , 74 open‐ended questionnaires 19 or content analysis. 25 Four (8%) studies adopted a mixed‐methods design. 54 , 71 , 72 , 86

Caregiver demographics

content_tagsA total of 5992 caregivers were sampled across studies. As shown in Table 2 , the mean age of the caregivers ranged between 40 77 and 76 78 years. Most caregivers were women (55%–97%). 68 , 87 The majority of the caregivers were cohabitating spouses/partners ( n = 2898, 48%), followed by offspring or children ( n = 1674, 28%), parents ( n = 353, 6%), siblings ( n = 167, 3%), grandchildren ( n = 58, 1%) or undisclosed ‘other’ ( n = 838, 14%).

Study and caregiver sample characteristics in the 50 studies included in the review

Chronic neurological condition

The most commonly reported CNCs were progressive conditions ( n = 43, 86%). A substantial proportion ( n = 37, 74%) of the progressive conditions studied were dementia, Alzheimer's disease or other dementias (e.g., mixed, vascular). The remaining progressive conditions were PD ( n = 2, 4%), 63 , 69 PD‐related dementia ( n = 2, 4%) 56 , 57 and MND ( n = 1, 2%). 61 Few studies ( n = 7, 14%) included sudden‐onset conditions including SCI, 58 , 60 , 67 , 91 ABI 50 , 60 and TBI. 77 , 91 , 92 No studies included intermittent (e.g., epilepsy) or stable (e.g., polio, cerebral palsy) conditions.

Conceptualization, measurement and levels of resilience

Resilience conceptualizations

Certain ( n = 7, 14%) studies minimally or unclearly defined resilience, 75 , 85 briefly presenting it as a general protective psychological factor, 51 , 60 or simply in relation to stress 56 , 57 or positive coping (see Table 3 ). 47 The remaining articles ( n = 43, 86%) offered some type of a theoretical definition of resilience. When broadly discussed, the vast majority of included articles incorporated the idea of healthy adaptation into their conceptualizations of resilience. Further, most referred to preserving some level of well‐being, equilibrium or positive functioning in the face of adversity. Many ( n = 13, 26%) studies referred to the significance of internal and external resources, protective factors, and relational and situational contexts in facilitating resilience development. 38 , 48 , 52 , 53 , 54 , 55 , 59 , 65 , 67 , 74 , 78 , 82 , 92 concepts↗For instance, self‐compassion was an internal resource conceptually linked to resilience. 54

Operationalized definitions of resilience by article included in the review

Beyond these commonalities, researchers differed in terms of whether they defined resilience as a multidimensional process or a personality trait. On one side of this discordance, some studies ( n = 8, 16%) used language that illustrated resilience as a personal quality, skill or attribute enabling caregivers to adapt in the experience of hardship. 49 , 55 , 64 , 67 , 70 , 76 , 78 , 92 Comparably, resilience was described in articles ( n = 7, 14%) as an individual's ability or capacity to adjust successfully and maintain normal functioning despite adverse trauma, 63 , 65 , 73 , 79 , 80 , 88 , 89 alluding to the belief that resilience is a fixed competence. In fact, the main aim of one study was to test the hypothesis that caregiver resilience is a personality trait, after which it was concluded that resilience is, indeed, an individual characteristic. 89 concept_edgesThus, a total of 22 (44%) studies explicitly advanced trait definitions of resilience. 19 , 25 , 51 , 56 , 57 , 59 , 60 , 61 , 63 , 65 , 66 , 70 , 72 , 76 , 79 , 80 , 81 , 82 , 83 , 88 , 89 , 90 In contrast, a substantial proportion ( n = 18, 36%) of researchers opted for construing resilience as a dynamic process. 38 , 46 , 48 , 49 , 50 , 52 , 53 , 54 , 55 , 62 , 68 , 69 , 71 , 74 , 77 , 84 , 86 , 91 concepts↗Some ( n = 7, 14%) authors used a more mixed model of resilience, presenting the concept of resilience as a hybrid of both a personality characteristic and an evolving process. 58 , 64 , 67 , 73 , 78 , 87 , 92

Origins of resilience definitions

Authors conceptualized resilience in a diversity of forms, citing numerous sources in support of their interpretation. Many authors interpreted resilience from a combination of sources, electing to not advance a singular definition. Some studies ( n = 12, 24%) specified the use of a specific resilience theory or framework. 19 , 25 , 38 , 52 , 53 , 67 , 76 , 79 , 80 , 81 , 83 , 86 Of the frameworks explicitly included, the Ecological Resilience Framework 31 applied to caregivers was most common and incorporated into four studies (8%). 25 , 38 , 52 , 53 Two sets of original resilience theorists were frequently accredited as the primary source of authors' understanding and characterization of resilience. These theorists include (1) Wagnild and Young, 37 who offer a trait‐based resilience definition, and (2) Windle et al., 29 , 31 who conceptualize resilience as an unfixed process. The former was utilized in some studies ( n = 4, 8%), 70 , 76 , 88 , 90 and the latter was found in multiple studies ( n = 8, 16%). 38 , 48 , 52 , 53 , 54 , 69 , 74 , 77

Measurement and levels of resilience

In quantitative and mixed‐methods studies, 12 different instruments were used to measure resilience. A summary of the 12 scales is presented in Table 4 . Three studies (6%) used caregiver‐specific measurements. 50 , 85 , 86 The most commonly used scale was the Resilience Scale (RS) by Wagnild and Young. 37 Twelve studies (24%) 46 , 58 , 70 , 71 , 72 , 76 , 78 , 87 , 88 , 89 , 90 , 91 used the full version of the RS, whereas four studies (8%) used the short form. 66 , 80 , 81 , 82 A second common scale was the CD‐RISC. 32 , 93 , 94 Seven studies (14%) used the full version of the CD‐RISC, 51 , 64 , 65 , 75 , 79 , 84 , 92 while one (2%) study used a shortened form. 60 Another commonly used scale was the six‐item BRS, 36 reported in seven studies (14%). 47 , 56 , 57 , 63 , 67 , 69 , 83 content_tagsOriginal validation of the included scales reported acceptable to strong internal consistency ( α = .67–.95). Several of the retained studies (18%) assessed resilience scale reliability within their caregiver samples, 46 , 59 , 62 , 63 , 67 , 69 , 84 , 85 , 87 demonstrating acceptable to strong internal consistency ( α = .73–.96). Three studies (6%) developed and validated instruments to measure caregiver resilience, 50 , 66 , 86 and reported strong reliability ( α = .87–.96).

Description of resilience measures included in the review

Most quantitative and intervention studies assessed and reported the level of resilience among sampled caregivers. However, the majority of studies ( n = 22, 44%) did not interpret these resilience measures in reference to scale‐based criteria or in comparison to other populations; instead, most attended to other resilience‐related results, incorporating resilience as a modulator, outcome or into higher‐level models. Within those that did measure and interpret resilience as a continuous variable, sampled caregivers demonstrated moderate‐to‐high‐resilience levels in seven articles (14%), 58 , 71 , 76 , 82 , 83 , 87 , 89 while two articles (4%) also inferred low‐resilience levels in a minority of participants. 58 , 71 Numerous studies ( n = 10, 20%) sought to categorically classify participants into different resilience groups, either as resilient or nonresilient, 38 , 52 , 53 or in some version of low‐, medium‐ or high‐resilience groups. 49 , 54 , 55 , 56 , 57 , 77 , 91

Correlates and predictors of psychological resilience

Sociodemographics and contextual resources

As summarized in Table 5 , 12 (24%) studies examined sociodemographic or contextual factors including gender, injury or disease severity and clinical symptoms associated with resilience. 48 , 49 , 57 , 58 , 60 , 67 , 77 , 83 , 87 , 88 , 89 , 90 Our synthesis revealed heterogeneity in studies reporting the relationship between sociodemographic and clinical characteristics and resilience. content_tagsSix articles (12%) demonstrated that demographic, CNC severity, clinical and health status variables were not significantly related to caregivers' resilience levels. 58 , 77 , 87 , 89 , 90 , 91 In contrast, findings from 11 studies (22%) indicated that demographic and clinical variables were significantly related to resilience, including income, 62 , 85 employment status, 83 gender, 49 , 72 , 83 , 85 ethnicity, 81 , 85 age 72 and severity of dementia. 88

Quantitative, mixed‐methods and qualitative articles' descriptions and summaries of resilience findings

concepts↗Three studies (6%) investigated resilience resources or assets—markers that are typically positioned conceptually upstream to resilience development. For instance, studies broadly examined resilience resources at multiple ecological levels. 25 , 38 , 53 In three explorative articles (6%), resilience resources emerged at the individual, community and societal levels. 25 , 38 , 53 In five cases (10%), resilience was related to specific behaviours, such as treatment uptake, 61 , 75 private prayer 79 and likelihood of care recipient abuse or neglect. 51 , 65

Social support and relational outcomes

Social support availability was a predominant construct assessed as an antecedent to resilience. 49 , 52 , 65 , 67 , 69 , 82 unhoused_relationsAmong three studies (6%), social support was repeatedly predictive of resilience, 49 , 69 , 82 with emotional and informational support the most likely to predict resilience. Specifically, four studies (8%) examined the association between resilience and relationship outcomes, including relationship satisfaction 56 , 67 , 78 and family dynamics. 62 Three studies (6%) determined that resilience was linked to romantic relationship benefits, 67 relationship satisfaction 56 and family dynamics (e.g., empathy, family problems). 62 However, another study did not find resilience to be significantly correlated with marital satisfaction. 78

Caregiver burden

A pattern across study objectives emerged, such that resilience was conceptually explored as a protective factor in opposition to caregiver burden. Indeed, numerous studies ( n = 13, 26%) sought to examine the relationship between psychological resilience and burden. 46 , 56 , 57 , 58 , 59 , 64 , 72 , 79 , 81 , 83 , 88 , 91 , 92 unhoused_relationsA key finding congruous across 12 reviewed studies (24%) was that caregiver burden was inversely associated with resilience. 46 , 54 , 56 , 57 , 58 , 59 , 64 , 79 , 81 , 83 , 91 , 92 Occasionally, caregiver burden was investigated in tandem with other variables reflective of well‐being such as life satisfaction, 58 positive or negative affect, 91 social support, 64 , 81 general distress, 46 , 72 quality of life 88 and coping. Within seven studies (14%) that evaluated the association between resilience and burden, resilience was significantly and positively linked to multiple well‐being outcomes, namely, relationship satisfaction, 58 positive affect, 91 , 92 social or spiritual support, 51 , 81 quality of life 88 and coping. 92 content_tagsIn fact, in one recent study, social support mediated the relationship between resilience and burden. 64

General health outcomes

Independently of burden, resilience was explored in association with a number of positive and negative health outcomes; these variables consisted of psychological distress, 54 , 60 , 63 , 67 , 71 , 75 , 76 , 82 health‐related quality of life, 63 , 75 , 77 mental health 47 , 68 , 69 , 70 , 84 and coping strategies. 76 , 80 Three studies (6%) that examined coping and its connection with resilience determined that coping strategies correlated with resilience, 76 , 80 , 92 specifically problem‐focused coping 76 , 92 and emotion‐focused coping. 76 unhoused_relationsA second notable result among six studies (12%) was the inverse relationship between resilience and psychological distress, 54 , 60 , 63 , 67 , 71 , 82 reinforcing the concept that resilience assumes an adaptive psychological function and attenuates stress. Similarly, findings from 15 studies (30%) that did not involve burden showed that resilience exerted a positive impact on mental health outcomes, with a persistent inverse association with depressive symptoms, 47 , 54 , 68 , 72 , 87 , 88 , 89 , 90 and a direct association with quality of life, 63 , 77 , 88 , 89 along with other general mental health indicators. 19 , 70 , 84

DISCUSSION

We undertook this review to document the scope of published research on psychological resilience among informal family caregivers of adults with CNCs. The volume of reviewed studies published within the last ten years is evidence that resilience is being increasingly investigated in the caregiving field, particularly within the context of dementia. However, this increased interest in resilience is accompanied by minimal conceptual consensus from a mosaic of scholarly origins, and findings suggest a lingering debate between process‐ and trait‐based definitions.

Some popular measurement tools were detected in included studies (i.e., RS, CD‐RISC, BRS), and yet, a plethora of scales were used to assess self‐perceived resilience, with minimal use of caregiver‐specific instruments despite characteristic similarities. Furthermore, in reports of resilience levels, some interpreted resilience as a continuous variable, while others categorically divided samples into stratified high–low resilient groups, making it difficult to judge how resilience capacities compared to other populations. A broad array of resilience predictors and correlates were observed, whereby resilience was inversely associated with burden, distress and depressive symptoms, and directly associated with various caregiver well‐being indicators including quality of life, coping, social support and mental health. These results confirm the potential for resilience to be leveraged within caregiver health promotion initiatives via policy and public practice.

Retained articles advanced a range of definitions of resilience. Although most resilience descriptions converged on components of adaptation and healthy functioning, the range of conflicting conceptualizations demonstrates that any form of consensus regarding resilience in family caregiver research has yet to be achieved. On one end of dissent, there was prevailing fixation on individual resilience, with conceptualization and measurement of resilience as a fixed characteristic or personality trait. These definitions appeared in sharp contrast to contemporary understandings of resilience as a dynamic process that interacts with the surrounding environment. Disagreement surrounding how caregiver resilience is defined and operationalized, in addition to the lack of a widely accepted theory or conceptual framework, renders investigation of the construct inconsistent. 101

sensesOne retained study explored conceptual resilience discrepancies between academic definitions of resilience and caregivers' personal conceptualizations, and found that caregivers extended the concept more broadly and emphasized the role of self‐compassion. 54 The implications of self‐compassion as a protective factor for psychological wellness have been previously documented in family caregivers, 102 and may represent a useful avenue for future resilience research. With this study 54 as an important example of a more caregiver‐centred approach, researchers should strive to actively involve vulnerable informal caregiver populations within the research process, commencing with resilience conceptualization and moving towards harmonization with clinical and academic definitions.

sensesSimilarly, the lack of a persistent definition of resilience within caregiver health research perpetuates the tendency of scholars to position resilience within statistical models as either a modulator of well‐being or a binary outcome itself that is either present or absent. 27 sensesIn actuality, modern resilience researchers argue that resilience is likely to exist on a continuum that fluctuates across different domains and the life course. 29 mechanisms↗Nevertheless, conceptual inconsistencies hinder the validity and generalisability of resilience findings and represent a barrier to providing direction for the development of clinical applications designed to enhance resilience within targeted caregiver populations. To mitigate these inconsistencies moving forward, CNC caregiving research should attempt to follow a unified caregiver‐centred resilience framework to navigate this robust interdisciplinary construct across developmental trajectories.

The current divergence in resilience conceptualization and assessments may be representative of the relative novelty of this concept in comparison to other long‐standing psychological constructs that have had been comprehensively validated across populations and widespread contexts. Equivalently, the differing use of quantitative resilience scales supports the notion that there is no gold standard of resilience assessment. 33 The absence of homogeneity in resilience measurement undermines the ability of researchers, clinicians and community members to reliably monitor and evaluate the efficacy of resilience‐building programmes. 103 This lack of standardization further prevents resilience levels from being compared across different caregiver subpopulations. 27 Similarly, with few developed and validated condition‐specific scales within the resilience field, it is difficult to reliably verify and contrast resilience levels within distinct caregiving populations. It is recommended that future resilience and caregiving research draw on contemporary views of resilience from broad literature to formulate context‐specific measures, while attending to the evolving theory and research. This will surely elevate the quality of resilience‐based research moving forward, while preventing further dispersion within the field.

The underrepresentation of caregivers of persons with less common CNCs in the included studies was apparent and presents a challenge for advancing disease‐specific resilience applications. Few studies examined sudden‐onset conditions, there was an absence of stable and intermittent types of conditions and progressive conditions consisted of mostly dementia. As we approach a saturation of research in resilience in dementia caregiving, resilience in caregiving populations of other CNCs (e.g., MS, MND, epilepsy, cerebral palsy) remains understudied. This is problematic because it has been empirically proven that caregiver demographics and health outcomes vary as a function of the specific CNC encountered. 104 It is important that such overlooked populations garner further interest in the field of resilience investigation, allowing their respective resilience processes to be equitably understood, measured and harnessed.

To account for discrepancies in the caregiving experience across different CNCs, there remains dispute within the literature concerning the degree of influence that demographic and clinical factors exert on resilience processes. The studies reviewed herein captured the relationship between resilience and age, gender, income, employment status, ethnicity and clinical injury or disease severity; some studies reported that these factors were significantly associated with resilience, 49 , 62 , 72 , 81 , 83 , 85 , 88 while others did not. 58 , 77 , 87 , 89 , 90 , 91 This debate is further compounded by the fact that most sampled caregivers were spousal and middle‐aged women from homogeneous cultural regions. This dispute clouds current understanding of the intersection between resilience and individual and contextual factors related to the caregiver population, such as biological underpinnings, environment and culture—all of which have been integrated into resilience perspectives. 27 , 105 , 106 In line with socioecological models of resilience, 31 , 105 , 107 it is imperative to clarify which sociodemographic and environmental factors facilitate resilience development in CNC caregivers via a culturally sensitive approach that embraces heterogeneity. 41 One way to determine how contextual factors influence the resilience trajectory is by conducting longitudinal studies. 27 content_tagsAs most of the included articles (80%) originated from western English‐speaking countries, multicultural representation within resilience and caregiver research remains deficient. Future research should strive to explore CNC caregiver resilience across cultures to accurately profile differing environmental and demographic factors and their influence on resilience within diverse community settings.

Finally, we observed resilience exploration in connection to caregiver burden in one quarter of the included studies. This prevalence suggests that resilience research in CNC family caregivers is inconsistent with emergent resilience research, as broader disciplines now favour a strengths‐ and competence‐based approach. 26 , 27 We acknowledge that a proportion of the reviewed studies (30.5%) excluded burden from their design and depicted the positive link between resilience and well‐being. However, it appears that many researchers continue to examine the negative consequences of caregiving, and how resilience protects caregivers from impending risk innate to their role. This, in turn, fails to abandon the outmoded deficit‐based model of caregiver resilience and mental health. 27 Despite the expected inverse relationship between resilience and burden, we caution against the assumption that caregiver burden and resilience can coexist, such that one determines the other. Instead, it is advised to position each concept as mutually exclusive, as the exact causal mechanisms responsible for their association remain unknown. 100 , 105 Arguably, through conflation of dimensions of flourishing and languishing, our understanding of resilience becomes obscured by the pathologies and dysfunction denoted by caregiver burden. 107 It is suggested that scholars adopt a more proactive or preventative approach that prioritizes building strengths, 27 while simultaneously no longer assuming that CNC caregiving is uniformly burdensome.

Limitations

This study had some limitations. limitationsFirst, resilience is a wide‐ranging and nuanced concept that parallels with other psychological topics (e.g., hardiness, adaptation, coping) across psychosocial disciplines. To address this concern, we adopted a broad approach in our initial search strategy to acquire as much relevant literature as possible; still, it is possible that we missed relevant literature because of our resilience‐specific focus. limitationsSecond, due to the nature of many variables often examined in close association with resilience, it is possible that there was potential methodological bias among the retained studies in describing these relationships, including issues of simultaneity and reverse causality.

There is scarcity of research in family caregivers of more uncommon conditions (e.g., MS, MND, epilepsy) that limited the extent to which the protective role of resilience in more unique care‐providing situations could be explored. We are cautious about offering condition‐specific conclusions at this time because of the overrepresentation of dementia‐related caregiver populations, and the overall heterogeneity of the included studies. limitationsLastly, this study was limited by its inclusion of only English‐language publications, which limited our search to studies conducted primarily in North America and Europe. This limitation made it challenging to obtain diverse geographical representation and assess how resilience varies widely across countries and cultures.

CONCLUSION

This review synthesized existing knowledge of resilience in family caregiving for persons living with a CNC. claim_typeFindings revealed an insufficient level of agreement among researchers with respect to how resilience is theorized, conceptualized and assessed. sensesThis emphasizes the fact that resilience is a complex, multifaceted phenomenon that merits further clarification within the caregiving sphere with respect to whether it is a trait, process or a hybrid of the two. Collective findings demonstrate that resilience is associated with better overall health and psychological well‐being, and contributes to optimal stress management among CNC family caregivers. The ideal context in which resilience develops and how that process varies cross‐culturally has yet to be determined, though this represents a useful direction for future research and complements newfound socio‐ecological resilience theories. Furthermore, while a strengths‐based approach does not currently unanimously prevail across the reviewed literature, there is room for evolution to dissociate weakness‐, risk‐ and deficit‐focused models of caregiving from resilience and to cultivate approaches rooted in caregiver empowerment. With limited representation of intervention studies, there is a need to develop targeted interventions for informal CNC caregivers aimed at promoting resilience and increase awareness of the positive aspects of caregiving.

AUTHOR CONTRIBUTIONS

The underlying search strategy was developed by the first author (Odessa McKenna), second author (Afolasade Fakolade), third author (Katherine Cardwell) and the corresponding author (Lara A. Pilutti). The search strategy was refined, conducted and managed by the fourth author (Nigèle Langlois). The corresponding author (Lara A. Pilutti) merged results into the appropriate data management software and removed duplicates. Together, the first (Odessa McKenna), third (Katherine Cardwell), and fifth (Karen Jiang) authors completed the article screening process. The first (Odessa McKenna) and third (Katherine Cardwell) authors completed data extraction. This manuscript, including the introduction, results, discussion and conclusion sections was written by the first author (Odessa McKenna), while the methods section was written in collaboration with the fourth author (Nigèle Langlois). This manuscript was edited extensively by authors Afolasade Fakolade and Lara A. Pilutti. Authors Karen Jiang and Katherine Cardwell contributed moderately to final revisions.

Supporting information

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Supporting information.

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ACKNOWLEDGEMENTS

The authors would like to thank Sarah Visintini, MLIS (Berkman Library, University of Ottawa Heart Institute), for peer review of the MEDLINE search strategy.

CONFLICT OF INTERESTS

The authors declare no conflicts of interests.

McKenna O, Fakolade A, Cardwell K, Langlois N, Jiang K, Pilutti LA. Towards conceptual convergence: a systematic review of psychological resilience in family caregivers of persons living with chronic neurological conditions. Health Expect. 2022;25:4‐37. 10.1111/hex.13374

DATA AVAILABILITY STATEMENT

Data sharing is not applicable to this article as no new data were created or analysed in this study.

REFERENCES

Associated Data

Supplementary Materials

Supporting information.

Click here for additional data file.

Supporting information.

Click here for additional data file.

Data Availability Statement

Data sharing is not applicable to this article as no new data were created or analysed in this study.