Introduction
Neurodegenerative disease (ND) associated with a steady loss of neurons in the brain and body, leading to severe decline and loss of function, often over several years (Lamptey et al., Reference Lamptey, Chaulagain and Trivedi2022). Due to the significant loss of function, persons living with ND (PWND) come to rely heavily on caregivers, including family members, friends, or others, who provide support for activities of daily living. The growing aging population in the United States brings an increased prevalence of ND (Hou et al. Reference Hou, Dan and Babbar2019), and as a consequence, caregivers have been increasingly called to support these individuals. Caregivers of PWND manage progressively complex and prolonged care in service of wellbeing for the care recipient given that each ND is progressive, incurable, and irreversible (Aoun et al. Reference Aoun, Bentley and Funk2013; Brizzi et al. Reference Brizzi, Bridges and Yersak2020; Connolly et al. Reference Connolly, Galvin and Hardiman2015; Galvin et al. Reference Galvin, Carney and Corr2018; Poppe et al. Reference Poppe, Koné and Iseli2020). As caregivers channel extensive energy to these care activities, they also experience threats to their own health; most notably, these caregivers report extreme stress that lead to breakdowns in their functioning in their own lives (Han et al. Reference Han, Yuen and Jenkins2022; Sommers-Spijkerman et al. Reference Sommers-Spijkerman, Kavanaugh and Kruitwagen-Van Reene2023; Trucco et al. Reference Trucco, Backhouse and Mioshi2023), even after the care recipient has died and their care has ended (Mroz et al. Reference Mroz and Bluck2024).
Mitigation of poor wellbeing is thus essential for caregivers of PWND. The construct of self-compassion has recently emerged as a promising feature to reduce stress and foster wellbeing (Gallego-Alberto et al. Reference Gallego-Alberto, Márquez-González and Romero-Moreno2021; Hlabangana and Hearn Reference Hlabangana and Hearn2020). Self-compassion refers to openness to one’s own suffering and experiences, feelings of kindness toward oneself, remaining nonjudgmental when faced with shortfalls, and awareness of a shared human experience (Neff Reference Neff2003). Self-compassion has been increasingly studied for its potential to mitigate adverse psychosocial outcomes amid life stressors (Barnard and Curry Reference Barnard and Curry2011; Bluth and Neff Reference Bluth and Neff2018; Brown et al. Reference Brown, Huffman and Bryant2019). Broadly, those who report higher self-compassion also report lower depression and anxiety and higher wellbeing (Goodridge et al. Reference Goodridge, Reis and Neiser2021), demonstrating potential for self-compassion as critical mechanism of positive psychological outcomes. In caregivers specifically, mindful self-compassion approaches, that is, self-compassion practices with nonjudgmental attention to the present moment, have been found to reduce stress, anxiety, and emotional distress related to caregiving activities (Hudson et al. Reference Hudson, Ungar and Albright2020). Most popular in recent years is the integration of the concept of self-compassion into interventions that target mindfulness (Barnard and Curry Reference Barnard and Curry2011). As the field of self-compassion research grows to envelop populations of caregivers of PWND, a review of research to-date will offer a deeper understanding of the value of caregivers’ self-compassion for navigating caregiving, achieving care goals, and improving wellbeing across and after the caregiving role.
The current study presents a scoping review of literature, mapping the emergence and operationalization of self-compassion in the context of caregiver wellbeing of caregivers of PWND. The research question guiding this review is: How is the concept of self-compassion incorporated into, and characterized within, research on caregiver wellbeing of PWND? Our aims are to understand the scope of peer-reviewed research on self-compassion as it relates to wellbeing in this population, including the measurement tools used to examine self-compassion in the population, and provide guidance for its ideal characterization for future design of potent, effective interventions. This review distinguishes the ways in which self-compassion is used in literature centering caregiver wellbeing, and identifies self-compassion scales used (e.g., existing self-report surveys). Additionally, we describe the scope of the construct of self-compassion in 2 distinct ways: (1) as a primary outcome or marker of wellbeing and (2) as a predictor of other markers of wellbeing (i.e., quality of life, psychological distress, burden, coping), representing a potential mechanism of behavior change (i.e., mediator).
Methods
Resources outlined in The Cochrane Handbook, such as the Feasible, Interesting, Novel, Ethical, and Relevant (FINER) criteria provided a foundational framework to determine the appropriateness of study type (Higgins et al., Reference Higgins, Thomas and Chandler2023), and were used to refine the boundaries of this review. This study is registered with the Open Science Framework (OSF). The Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Reviews (PRISMA-ScR) was used as a framework for reporting.
Rationale
This topic bridges both medical and social literature. Frameworks for performing a scoping study were used from Arksey and O’Malley (Reference Arksey and O’Malley2005), founded in the social sciences, and Levac et al. (Reference Levac, Colquhoun and O’Brien2010), founded in health research. We chose to conduct a scoping review, rather than a different methodology because the purpose of the review is to map the literature involving self-compassion specifically for caregivers of PWND, rather than respond to a particular question about caregiver self-compassion. Moreover, scoping reviews seek to provide a narrative account of what exists in the literature, rather than a synthesis and assessment of quality of evidence (Arksey and O’Malley Reference Arksey and O’Malley2005). This review provides an innovative yet rigorous framework to blend scientific disciplines in capturing evolving research landscapes.
Search strategy
The published literature was searched using strategies created by a medical librarian for self-compassion and caregivers. The search was implemented on February 13, 2023, in Embase.com 1947-, PubMed 1946-, and Web of Science 1900-. The search used a combination of standardized terms and keywords without any limits or filters. Keywords and subject headings related to self-compassion and caregiver were identified through preliminary searches. Full search strategies are provided in the Appendix.
Eligibility
Several criteria were used to select relevant studies. First, most study methodologies were eligible for inclusion: mixed methods, observational, qualitative, intervention including randomized control trials, and quasi-experimental designs. Hypothesis generating literature such as theoretical frameworks and concept papers were also included. Reports and scale validations were excluded. Second, only peer-reviewed articles written in English were included (Pieper and Puljak Reference Pieper and Puljak2021), to meet research team language capabilities. Third, studies were included when self-compassion was described as part of the caregiver experience either (1) as a measured construct applied by the research team, or (2) as emerging from caregivers’ reflections on their caregiving experiences. Fourth, any health measure captured (i.e., mental, emotional, physical) was included to capture the breadth of wellbeing. Fifth, we focused on adult caregivers of PWND as a population of interest. Articles were excluded if caregivers performed care in any professional capacity (e.g., physicians, nurses, aides, etc.) for individuals to whom they had no pre-existing social relationship, or if the caregiver was a minor. Lastly, care recipients with diagnoses of Alzheimer’s disease, Parkinson’s disease, amyotrophic lateral sclerosis (ALS), prion disease, motor neuron disease, Huntington’s disease, spinal muscular atrophy, and spinocerebellar ataxia were included, as consistent with the molecular medicine classification of the most common NDs (Lamptey et al. Reference Lamptey, Chaulagain and Trivedi2022).
Data extraction and management
To remain consistent in the sorting process, the reviewers independently reviewed the same subset of 3 articles to compare sorting results and discuss rationale. Upon agreement and clarity of definitions and operationalization of terms, remaining articles were independently and blindly sorted based on abstract information, using the collaboration platform Rayyan. Any articles that presented a conflict were discussed and the reviewers came to a consensus. All conflicts came to consensus. Data tracking was performed using an excel spreadsheet with article information including author, year of publication, title, study design (i.e., quantitative, qualitative, intervention, or mixed methods), participant information (i.e., country, number of participants, demographics, care recipient conditions), context in which self-compassion was presented, measures or scales used, and study findings. To address our research question, our initial search resulted in a total of 563 articles. Duplicates were removed from Endnote (n = 213), bringing the final total to 350 unique citations.
Data analysis
As outlined in Arksey and O’Malley’s (Reference Arksey and O’Malley2005) framework, we identified and selected relevant studies, charted the data, and conducted a descriptive summary analysis to describe the overall pattern of participant characteristics, study types, care recipient conditions, and measurement used for self-compassion. Then, using qualitative content analysis techniques as recommended by Levac et al. (Reference Levac, Colquhoun and O’Brien2010), studies were grouped by the characterization and incorporation of self-compassion each study: conceptual integration, emergent theme, associated with other psycho-behavioral outcomes, major outcome. The authors then wrote descriptions of the articles in each group and reviewed those descriptions for accuracy and comprehension. Conceptual integration occurred when self-compassion was used as an idea or a component of wellbeing, but not actually measured by researchers or brought up by participants qualitatively. Self-compassion emerged as a qualitative theme during inductive analysis, revealing that self-compassion is an essential component to navigating and coping in the caregiver experience. It was described as a predictor variable when it was measured as an independent variable in a quantitative study where associations were tested with dependent variables. Finally, self-compassion was described as an outcome variable when it was measured as an endpoint or dependent variable, either predicted by other variables or compared in a pre-posttest design to assess an intervention.
Results
The 350 unique citations were sorted on topic and title and compared against inclusion criteria. Of those, 76 remained to be sorted from abstract content, which was completed by 2 reviewers (CML, SP). An additional 52 articles were eliminated, leaving 24 articles for full text review, all of which were available for retrieval. Reviewers (CML and SP) evenly divided articles, each reading 12 and completing data tracking. After a full text review, 6 articles were excluded, leaving 18 articles included in the review (Figure 1).
Systematic review flow diagram.
Participant characteristics
Trends in study characteristics (i.e., country, number of participants, demographic, care recipient condition) in the reviewed articles are summarized in Table 1. Among those selected, 15 articles (83%) focused only on caregivers. The others were dyadic studies that included measures completed by care recipients as well as caregivers. Sample size ranged from 7 to 141 individuals depending on the study type (e.g., intervention, quantitative, qualitative, and mixed studies). Study participants were mostly middle-aged females. Studies were conducted in the U.S. (Han et al. Reference Han, Yuen and Jenkins2022; Jain et al. Reference Jain, Chernyak and Nickerson2022; James et al. Reference James, James and Larkey2021; Spigelmyer et al. Reference Spigelmyer, Brar and Brar2023; Yang et al. Reference Yang, Zamaria and Morgan2022), Canada (Goodridge et al. Reference Goodridge, Reis and Neiser2021; Zarei et al. Reference Zarei, Lakhanpal and Sadavoy2022), the United Kingdom (Contreras et al. Reference Contreras, Mioshi and Kishita2021; Diggory and Reeves Reference Diggory and Reeves2022; Hlabangana and Hearn Reference Hlabangana and Hearn2020; Jones et al. Reference Jones, Mioshi and Killett2019; Lloyd et al. Reference Lloyd, Muers and Patterson2019), Europe (Berk et al. Reference Berk, Warmenhoven and Stiekema2019; Giménez-Llort et al. Reference Giménez-Llort, Martín-González and Maurel2021), Israel (Tolmacz and Pardess Reference Tolmacz and Pardess2022), Australia (Murfield et al. Reference Murfield, Moyle and O’Donovan2020b), Brazil (Danucalov et al. Reference Danucalov, Kozasa and Afonso2017), and Japan (Tamura et al. Reference Tamura, Shikimoto and Nagashima2023).
Self-compassion in caregivers of persons living with neurodegenerative diseases
Note: Number of participants refers to the participating caregivers only; information on included care recipients is not provided.
Most study participants were White with few articles including specific racial or ethnic backgrounds such as Black or African American, Hispanic, Native American, Asian, or mixed/multiple ethnic groups (Han et al. Reference Han, Yuen and Jenkins2022; Jain et al. Reference Jain, Chernyak and Nickerson2022; Yang et al. Reference Yang, Zamaria and Morgan2022). The diagnoses of care recipients included Alzheimer’s disease and related dementias in most studies (95%). In 4 (21%) articles, PWND such as multiple sclerosis (Giménez-Llort et al. Reference Giménez-Llort, Martín-González and Maurel2021; Hlabangana and Hearn Reference Hlabangana and Hearn2020; Murfield et al. Reference Murfield, Moyle and O’Donovan2020b), Parkinson’s disease (Murfield et al. Reference Murfield, Moyle and O’Donovan2020b), and motor neuron disease (Diggory and Reeves Reference Diggory and Reeves2022) were also included, as well as individuals living with other chronic, progressive illness including cancer (Diggory and Reeves Reference Diggory and Reeves2022; Hlabangana and Hearn Reference Hlabangana and Hearn2020; Murfield et al. Reference Murfield, Moyle and O’Donovan2020b), and spinal cord injury (Hlabangana and Hearn Reference Hlabangana and Hearn2020).
Inclusion of self-compassion as a research construct
Self-compassion was addressed in 4 ways across studies: (1) applied as conceptual integration (3 articles, 16%), (2) emergent theme by the participant narrative (3 articles, 16%), (3) as a predictor (5 articles, 27%), and (4) as a major outcome (7 articles, 39%) of the study. In our review, we focus on main findings from these studies regarding caregiver self-compassion.
Self-compassion conceptually integrated
Conceptual integration is used here as the merging of 2 or more concepts into a cohesive scheme. We found self-compassion merged with several different areas of research such as an underpinning of the larger research framework (Goodridge et al. Reference Goodridge, Reis and Neiser2021; Spigelmyer et al. Reference Spigelmyer, Brar and Brar2023), embedded in an intervention where feedback about experiencing self-compassion was elicited via participant narrative (Diggory and Reeves Reference Diggory and Reeves2022), and as a concept to create a larger theory of caregiver wellbeing (Tolmacz and Pardess Reference Tolmacz and Pardess2022). In 2 intervention studies (Diggory and Reeves Reference Diggory and Reeves2022; Goodridge et al. Reference Goodridge, Reis and Neiser2021), education about self-compassion was presented to participants as part of mindfulness training programs. In a pre-post mindfulness-based self-compassion intervention (Goodridge et al. Reference Goodridge, Reis and Neiser2021), there was no notable change in caregiver burden (e.g., the Burden Scale for Family Caregiving), but increases in emotional wellbeing (e.g., World-Health Organizations-5) and decreases in emotion-based coping (e.g., Brief COPE). Diggory and Reeves (Reference Diggory and Reeves2022) findings highlight that a brief self-care intervention using a self-compassion framework can have a positive impact on caregivers’ reported wellbeing through helping caregivers develop a kinder internal orientation and permission to practice intentional self-care.
Self-compassion was also included as a core component of a conceptual model of caregiver wellbeing for caregivers of those living with dementia, (Tolmacz and Pardess Reference Tolmacz and Pardess2022). This model asserts that caregiver wellbeing is predicated on caregivers’ ability to balance care and compassion for others (e.g., the care recipient living with dementia) and care and compassion for self. The model suggests that the balance of self-compassion is inherently context-dependent and becomes more challenging to maintain as disease progresses. According to the model, social norms may reinforce the imbalance through negative attitudes, bias, and stereotypes (e.g., ageism), further isolating caregivers. The authors posit that the cultivation of self-compassion and integration of compassion into caregiver interventions restores balance not only on the individual level of the caregiver, but beyond to the family level, where extended family provides support as well (Tolmacz and Pardess Reference Tolmacz and Pardess2022).
Self-compassion as emergent theme from participants
In 1 qualitative (Jones et al. Reference Jones, Mioshi and Killett2019) and 2 intervention studies (Han et al. Reference Han, Yuen and Jenkins2022; Yang et al. Reference Yang, Zamaria and Morgan2022), self-compassion arose from data as an emergent theme. Jones (Reference Jones, Mioshi and Killett2019) describes caregiver’s propensity for being self‐compassionate in terms of accepting personal limitations and adapting expectations. In intervention studies, self-compassion was an area commonly mentioned by participants as newfound ability to find comfort, aspects of forgiveness, and empathy while struggling with depression (Yang et al. Reference Yang, Zamaria and Morgan2022). In a similar intervention study (Han et al. Reference Han, Yuen and Jenkins2022), no specific measure of self-compassion was used, rather qualitative themes emerged from post-intervention caregiver interviews, where caregivers reportedly recognized the need to be more self-compassionate. Authors note that these findings are congruent with specific components of self-compassion (e.g., shared humanity, mindfulness) (Bluth and Neff Reference Bluth and Neff2018) and were captured by the study’s subtheme of being more patient with relatives with dementia.
Self-compassion as a predictor of outcomes
Self-compassion was used as a predictor of main study outcomes in 5 quantitative studies (Contreras et al. Reference Contreras, Mioshi and Kishita2021; Giménez-Llort et al. Reference Giménez-Llort, Martín-González and Maurel2021; Hlabangana and Hearn Reference Hlabangana and Hearn2020; Lloyd et al. Reference Lloyd, Muers and Patterson2019; Murfield et al. Reference Murfield, Moyle and O’Donovan2020b). In 3 studies, self-compassion was negatively associated with psychological distress (e.g., caregiver burden) and dysfunctional coping strategies (Hlabangana and Hearn Reference Hlabangana and Hearn2020; Lloyd et al. Reference Lloyd, Muers and Patterson2019; Murfield et al. Reference Murfield, Moyle and O’Donovan2020b). Low self-compassion was found to be related to high caregiver burden, poor coping strategies, and poor emotion-focused coping (Lloyd et al. Reference Lloyd, Muers and Patterson2019). Also, dysfunctional coping strategies were found to mediate the relationship between self-compassion and caregiver burden (Lloyd et al. Reference Lloyd, Muers and Patterson2019). Hlabangana and Hearn (Reference Hlabangana and Hearn2020)included the number of hours spent caregiving (M = 8.90, SD = 6.40) and determined that more hours providing care and lower self-compassion are predictive of higher depression. Here again, self-compassion was negatively associated with burden, dysfunctional coping, and emotion-focused coping. In addition, Murfield et al. (Reference Murfield, Moyle and O’Donovan2020b) found that higher self-compassion was associated with lower emotion regulation difficulties and psychological distress and associated with better adaptive coping strategies. Following engagement in the Mindfulness Self-Compassion program conducted by Spigelmyer et al. (Reference Spigelmyer, Brar and Brar2023), coping scores (i.e., Ways of Coping) indicated some positive change in the ways in which caregivers think about stressful situations.
Alternatively, Contreras et al. (Reference Contreras, Mioshi and Kishita2021) found self-compassion was not a predictor of caregiver wellbeing. Moreover, self-compassion was found not to be a predictive factor in physical and mental health in caregivers when examining the secondary impacts of the COVID-19 pandemic (Giménez-Llort et al. Reference Giménez-Llort, Martín-González and Maurel2021).
Self-compassion as an outcome
Interventions studied psychological distress (e.g., stress and anxiety) and used integrative approaches to intervene (e.g., mindfulness, yoga, breath training) (Berk et al. Reference Berk, Warmenhoven and Stiekema2019; Jain et al. Reference Jain, Chernyak and Nickerson2022; Spigelmyer et al. Reference Spigelmyer, Brar and Brar2023; Tamura et al. Reference Tamura, Shikimoto and Nagashima2023; Zarei et al. Reference Zarei, Lakhanpal and Sadavoy2022). Most intervention studies found improvement in self-compassion post-intervention (Berk et al. Reference Berk, Warmenhoven and Stiekema2019; Jain et al. Reference Jain, Chernyak and Nickerson2022; Zarei et al. Reference Zarei, Lakhanpal and Sadavoy2022). Berk et al. (Reference Berk, Warmenhoven and Stiekema2019) conducted a 2-week mindfulness-based intervention and found improvement in self-compassion scores among caregivers of persons living with dementia. Zarei et al. (Reference Zarei, Lakhanpal and Sadavoy2022) conducted a tele-mindfulness intervention and found improvement in self-compassion, indicating the effectiveness of the intervention. Similar to mindfulness-based interventions, Jain et al. (Reference Jain, Chernyak and Nickerson2022) conducted a mentalizing imagery therapy and found that the intervention group experienced improved self-compassion and other positive psychological traits (e.g., mindfulness, wellbeing, acceptance). Specifically, self-compassion measures were higher in the post mentalizing imagery therapy group as compared to the control group which attended a standard support group (Jain et al. Reference Jain, Chernyak and Nickerson2022). In contrast, Tamura et al. (Reference Tamura, Shikimoto and Nagashima2023) completed a group multi-component program based on cognitive behavioral therapy and positive psychology but could not identify difference in changes of self-compassion within intervention group, nor between intervention and control groups.
Two studies used physiological interventions to assess self-compassion (Danucalov et al. Reference Danucalov, Kozasa and Afonso2017; James et al. Reference James, James and Larkey2021) but had contradicting findings. No improvement in self-compassion occurred after a virtual heart-focused breathing program (James et al. Reference James, James and Larkey2021), however, in an intervention using yoga and compassion meditation was shown to be beneficial in improving self-compassion (Danucalov et al. Reference Danucalov, Kozasa and Afonso2017).
Measures of self-compassion
Self-compassion was a measured outcome in 7 intervention studies (Berk et al. Reference Berk, Warmenhoven and Stiekema2019; Danucalov et al. Reference Danucalov, Kozasa and Afonso2017; Jain et al. Reference Jain, Chernyak and Nickerson2022; James et al. Reference James, James and Larkey2021; Spigelmyer et al. Reference Spigelmyer, Brar and Brar2023; Tamura et al. Reference Tamura, Shikmoto and Nagashima2022; Zarei et al. Reference Zarei, Lakhanpal and Sadavoy2022). Of the studies that used a questionnaire-style self-report measure of self-compassion (66%, N = 12), 58% (N = 7) chose the Self-Compassion Scale – Short Form (SCS-SF). The full version of the SCS (Raes et al. Reference Raes, Pommier and Neff2011) was used in 25% (N = 3) of studies. Murfield and colleagues (2020) study used a sub scale of Compassionate Engagement and Action Scales (CEAS) (Gilbert et al., Reference Gilbert, Catarino and Duarte2017)to measure compassion experienced for others, from others, and self-compassion. Tamura et al. (Reference Tamura, Shikimoto and Nagashima2023) utilized the Self-Compassionate Reactions Inventory – Japan (SCRI-J). This scale measures the level of self-compassion based on the degree to which people choose self-compassionate reactions to 8 hypothetical hardships (Miyagawa and Taniguchi, Reference Miyagawa and Taniguchi2016).
Discussion
Self-compassion was operationalized in several ways within the context of promoting psychological wellbeing for caregivers of PWND: it manifested as a component of integrated models of caregiver wellbeing, emerged as a core aspect of wellbeing through interviews with caregivers, was positioned as a predictor of common metrics of caregiver wellbeing (e.g., burden), and tested as an outcome of caregiver behavioral interventions. The literature varies in its application of self-compassion and description of how it may be most beneficial to caregiver wellbeing. Some studies integrate self-compassion as a component of mindfulness, consistent with the identified components (e.g., non-judgment) of both self-compassion and mindfulness (Bluth and Neff Reference Bluth and Neff2018). However, when using self-compassion as an integrated concept, studies did not measure self-compassion itself, rather imbedded it in frameworks or models to discuss other outcomes of interest (e.g., caregiver wellbeing, burden, kindness). Lack of unified definition and positioning of self-compassion in caregiver research can create inconsistencies in the literature and barriers to understanding the conceptualization of self-compassion in caregiver wellbeing.
When measured, the same tool is often used, the SCS either in long form or more often in short form. This may be due to limited measurement tools available fit to populations of caregivers of PWND (Murfield et al. Reference Murfield, Moyle and Jones2020a). Given that the SCS or SCS-SF is frequently used within this caregiver population, validation of fit may be needed to ensure accuracy of measurement. Should evidence support adaptation, the SCS has already evolved into a validated short form measure and has been adapted for youth populations (Neff et al. Reference Neff, Bluth and Tóth-Király2021), showing promise in its ability for adaptation to other groups. Future researchers are well-positioned to continue such adaptations and validations.
Of the studies that included the caregiver-care recipient dyad, none delved into the concept of self-compassion within the type of relationship comprising the dyad. For example, caregiver self-compassion may appear or function differently between spouses rather than a parent and adult child pairing. Few of the studies included in this review assess the length of time as a caregiver, time spent caregiving, or additional caregiving supports used, where previous evidence finds associations between time spent caregiving and psychological wellbeing (Contreras et al. Reference Contreras, Mioshi and Kishita2021). There is limited understanding of the external caregiving contexts that promote or inhibit this internal psychological process for this specific population of caregivers. There is also limited exploration of actor-partner interdependence (Allore et al. Reference Allore, Goldfeld and Gutman2020), where, for example, care recipient features may influence caregiver self-compassion, or vice versa.
Envisioning self-compassion within the landscape of intervention development
One important takeaway from this scoping review is that our understanding of self-compassion within frames of caregiving for PWND is still in its infancy, with the oldest study in this review from 2017 (Danucalov et al. Reference Danucalov, Kozasa and Afonso2017). Many studies inductively identified self-compassion as a central aspect of caregiver wellbeing, underscoring the value of addressing self-compassion in interventions. The scale most often referenced in the studies within this review was originally developed in 2003 (Neff Reference Neff2003), however the study of self-compassion and use of measures is notably more recent. To strengthen understanding of these measurement tools used to examine self-compassion in caregiver wellbeing, future reviews should examine the validity of measurements used as well as the quality of intervention studies performed.
In future studies, it is essential that the conceptualization of self-compassion be consistent in its operationalization. But what is the best way to conceptualize self-compassion within the landscape of caregiver wellbeing, and how should researchers translate concepts to building effective and potent interventions? The National Institutes of Health (NIH) has recently urged researchers to frame intervention development by defining and measuring mechanisms that underlie behavioral patterns that are targets of change (Nielsen et al. Reference Nielsen, Riddle and King2018). Researchers argue that the process of developing interventions, particularly complex or multi-component interventions targeting broad outcomes (e.g., caregiving patterns of stress, wellbeing, burden) is enhanced when researchers form and test hypotheses about why behaviors exist and how they are changed through intervention practices. Improving science by identifying and testing mechanisms can happen at all intervention development stages, but this is difficult to do when there is conflicting guidance about how to position constructs when forming hypotheses about behaviors and behavior change, as is the case of self-compassion as a construct.
In the case of self-compassion in this caregiver population, our review shows that existing studies have positioned self-compassion as both a potential mechanism of change (i.e., we can teach self-compassion skills, measure self-compassion changes, and determine how improvements in self-compassion are associated with improved clinical endpoints) and as an outcome variable (self-compassion is itself a clinical endpoint, as a marker of or aspect of caregivers’ wellbeing). Interestingly, observational research often positions self-compassion as a predictor variable (Giménez-Llort et al. Reference Giménez-Llort, Martín-González and Maurel2021; Lloyd et al. Reference Lloyd, Muers and Patterson2019; Murfield et al. Reference Murfield, Moyle and O’Donovan2020b), and therefore a potential mechanism of change once embedded in intervention trials. Existing intervention research positions self-compassion as an outcome (Berk et al. Reference Berk, Warmenhoven and Stiekema2019; Danucalov et al. Reference Danucalov, Kozasa and Afonso2017; Jain et al. Reference Jain, Chernyak and Nickerson2022; James et al. Reference James, James and Larkey2021; Tamura et al. Reference Tamura, Shikmoto and Nagashima2022; Zarei et al. Reference Zarei, Lakhanpal and Sadavoy2022), thus implying that self-compassion should stand as a clinical endpoint, particularly following mindfulness or related behavioral interventions. This spectrum may unintentionally obscure the best positioning of self-compassion in conceptual models or research designs.
Through our observations of existing research and caregiver-defined social and emotional needs (Zhang and Bennett Reference Zhang, Bennett and Kelley2024)we encourage researchers to focus on self-compassion as a potentially critical mechanism of change for caregivers of PWND. In this caregiving population specifically, self-compassion may serve as a necessary defense against common feelings of guilt, self-doubt, frustration, including in contexts when caregivers are ashamed of their perceived limitations, expressions of negative emotions, or changing mental representations of their relationship with their care recipient (Gallego-Alberto et al. Reference Gallego-Alberto, Márquez-González and Romero-Moreno2021). By doing so, self-compassion forms the link between negative caregiver outcomes and the origins of those outcomes (e.g., high stress as a result of intense feelings of guilt). This assertion could provide some clarity in the development of conceptual models that underpin interventions to increase caregiver wellbeing and reduce stress and psychological problems (i.e., our proposed clinical endpoints). We recognize that the existing interventions we reviewed in this article, those that target self-compassion as a primary outcome, may be quite useful for caregivers, but that expanded testing of those interventions may benefit from measurement of distal outcomes (e.g., reduced stress) as well as more proximal measurement of caregiver self-compassion. As research teams move these interventions along the NIH stages of development (Onken, Reference Onken, Carroll and Shoham2014), incorporating behavior change science in that work will help revise or accentuate the assertions we make here.
Future directions: Deepening understanding of caregiver self-compassion across and populations
The classification of ND is broad, but include a variety of distinct disease types, each with unique characteristics and care needs. Heterogeneity among care recipient diagnosis was not represented in this data. In these studies, ND was overwhelmingly represented by samples of persons living with Alzheimer’s disease or related dementias. Over half of all caregivers in the US provide support to the over 11 million adults currently living with Alzheimer’s disease or related dementias (AARP 2020), which may partially explain researchers’ focus to-date on caregivers in this population. This focus on caregivers of persons living with dementia, however, overshadows entire populations of caregivers for those with ND outside of dementia contexts. Other NDs in studies in this review were multiple sclerosis, broad motor neuron disease, and Parkinson’s disease. These are some of the most common NDs (Lamptey et al. Reference Lamptey, Chaulagain and Trivedi2022), however ALS, Huntington’s disease, prion disease, and spinocerebellar ataxia are also common NDs (Lamptey et al. Reference Lamptey, Chaulagain and Trivedi2022) but were not represented in the care recipient samples identified through our review. Future research should explore the nuances of self-compassion when caregiving for persons living with other NDs, as symptomology, disease trajectory, and care provision vary across these caregiving contexts. In addition, given the increasing functional debility of persons living with most types of ND, caregiving intensity increases in kind, yet this unique feature of caregiving remains unexplored in the literature. Discussions in gerontological literature already lean in the direction of exploring caregiving at a more diagnosis-specific level (Adelman et al. Reference Adelman, Tmanova and Delgado2014).
Caregivers, across cultures, in this review were overwhelmingly female. Literature centering caregiving within feminist and social justice frameworks note the evolving cultural expectations placed on women as well as shifts in power infused into the caregiving experience. This contributes to a gender imbalance in the participation of caregiving (Mackinnon Reference Mackinnon2009). Some research highlights an intersection between mindfulness and self-compassion as a means by which women may reclaim connection to the self after caring for someone else (Crowder Reference Crowder2016), thereby taking back their power. The question of imbalance remains: although the data may accurately represent the proportion of women acting as caregivers, there is limited understanding of the gender differences in caregiver burden and wellbeing (Xiong et al. Reference Xiong, Biscardi and Astell2020), and how mindfulness and self-compassion may, or may not, be beneficial for a male caregiver. Caregivers represented in this review were also predominantly White, which is not representative of the caregiving population as a whole (Garcia et al. Reference Garcia, Downer and Chiu2019; Liu et al. Reference Liu, Badana and Burgdorf2020). This suggests that conceptualizations and interventions are normed on the populations from which they are studied, and current interventions are disproportionately irrelevant to non-White caregivers. Shifting frameworks to inclusive (e.g., sociocultural and intersectional) theoretical perspectives and intentional recruitment of participants is necessary for future work (Dilworth-Anderson et al. Reference Dilworth-Anderson, Moon and Aranda2020). Self-compassion aligns comfortably with diversity and inclusion areas of opportunity, as one of the foundational elements is shared humanity (Barnard and Curry Reference Barnard and Curry2011). The act of caregiving inherently demonstrates this foundational component of self-compassion as seeing one’s experience as a part of the larger human experience by realizing that suffering is shared (Neff Reference Neff2003). In doing so, self-compassion fosters empathy and non-judgement, reducing bias and contributing to inclusivity.
Study limitations
Although a scoping review framework was used (Arskey and O’Malley Reference Arksey and O’Malley2005; Levac et al. Reference Levac, Colquhoun and O’Brien2010), given the heterogeneity of study types and context in which self-compassion is used in the literature, a quality assessment tool was not used. As such, there is unknown bias present in the studies included in review, possibly biasing the findings we presented. Within the framework employed, Arskey and O’Malley (Reference Arksey and O’Malley2005) recommend optional consultation of investors or interested parties as a way to ensure accuracy of findings. Consultation was not used which may lend to unidentified gaps in our work. As stated in the aims of the study, only peer-reviewed research was included, omitting literature that is not peer reviewed, in-progress, or not published. Given that this is a budding area of research, information from upcoming publications could have been missed. Additionally, literature published in English was eligible for inclusion, which may cause potential bias in the scope of work reviewed here.
Conclusion
Our scoping review mapped the inclusion of self-compassion in the context of caregiver wellbeing of caregivers of PWND. Diagnoses like dementia, Parkinson’s disease, ALS, and others have a dramatic and lengthy trajectory with increasingly complex care needs. Self-compassion has been incorporated into larger intervention frameworks, is often measured using a tool designed originally to address mindfulness, and is conceptualized as both a predictor or mechanism of change and an outcome or wellbeing endpoint (Goodridge et al. Reference Goodridge, Reis and Neiser2021; Han et al. Reference Han, Yuen and Jenkins2022; Hudson et al. Reference Hudson, Ungar and Albright2020; Sanchez-Perez et al. Reference Sanchez-Perez, Mendialdua-Canales and Hurtado-Pomares2022; Uneno et al. Reference Uneno, Kotera and Fujisawa2022). Clarity of concept and proof of impact are critical in employing evidence-based care (Barnard and Curry Reference Barnard and Curry2011). Additionally, norming and adaptation of measurement is needed, as the self-compassion tools available have yet to be normed or adapted for specific caregiver populations. Future work may specify the role of self-compassion in the caregiver experience, as well as its function as a mechanism of change to foster wellbeing.
Supplementary material
The supplementary material for this article can be found at https://doi.org/.10.1017/S1478951524001639.
Acknowledgments
We are grateful to the researchers who came before us, whose work made this review possible.
Funding
This research received no specific grant from any funding agency, commercial or not-for-profit sectors. Christi M. Lero is supported by a National Institute of Health (NIH) Institutional Training Grant (T32MH1996029). Dr. E. L. Mroz is supported by a National Institute on Aging (NIA) Institutional Training Grant (T32AG019134).
Competing interests
The authors declare none.
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