Encyclopedia of Gerontology and Population Aging

Living Edition
| Editors: Danan Gu, Matthew E. Dupre

Caregiver Identity

  • Laura M. FunkEmail author
Living reference work entry
DOI: https://doi.org/10.1007/978-3-319-69892-2_6-1

Synonyms

Definition

A cognitive construction that develops when individuals characterize themselves as a caregiver to a family member or friend, normally for those in need of support due to chronic illness or disability. Caregiver role identities serve as interpretive frames and sets of standards used by individuals to make sense of personal experiences, actions, and emotions, as well as guide subsequent behavior.

Overview

Family caregiver identity research highlights the salience of socially informed, shared expectations about and interpretations of caregiving. Peoples’ self-descriptions of themselves change through providing care over time; this process is influenced by gendered and culturally specific role expectations, as well as interactions with others who reinforce identities.

Key Research Findings

Family caregiver identity is distinct from the enactment of particular caregiving behaviors or role performance. Some individuals may begin expecting and thinking about caregiving long before the onset of objectively defined care (e.g., anticipatory caregiving, Sörensen 1998), and a caring identity may continue even after the last episode of caring, as when former or bereaved carers become advocates for other carers (Larkin 2009). Moreover, family members may provide care without self-identifying as carers; evidence suggests that some carers are uncomfortable with this identity (Henderson 2001; O’Connor 1999). For instance, in one survey of over 4000 older adults in the United States, 15% of respondents reported providing various activities typically associated with caregiving, yet did not self-identify as a caregiver in response to a targeted question (AARP Caregiver Identification Study 2001).

There is little empirical research that directly addresses family caregiver identity. In a recent review of research pertinent to caregiver identity and its development among those providing care for adults with chronic disease (Eifert et al. 2015), only 23 articles were identified. Summarizing this literature, the review authors identify several important influences on family caregiver identity development, including roles or responsibilities, familial ties and changes in relationships, and social influences (Eifert et al. 2015).

Most existing academic research applies a developmental or stage approach to caregiver identity, although emerging research also illustrates the variability and fluidity of caregiver self-identification (Hughes et al. 2013; O’Connor 2007). Considering developmental approaches, Montgomery and Kosloski’s Caregiver Identity Theory (2013) provides a promising base for understanding how caregiver identities emerge over time. They propose that caregiver identities develop as family members reconcile what they are doing with their expectations and understandings of their role identity; the disparity between responsibilities and expectations can create dissonance and stress, and caregivers may be motivated to change their identities so as to address this disparity (Montgomery and Kosloski 2009). They add:

Identity change [is] usually not a smooth, continuous process. Rather the assumption of a caregiver identity is an iterative process of change, which alternates between periods of relative stability wherein a role identity is maintained through small adjustments in behavior or perceptions, and periods when there are significant shifts in the caregiver’s identity that are associated with the acceptance of new norms for behavior. (Montgomery and Kosloski 2013: 137)

In relation to the expectedness of caregiving, one recent Canadian study (Guberman et al. 2011, 2012) found that baby-boomer caregivers tended not to view caregiving as a natural part of the life course or normal familial roles. The authors conclude that in the context of North American social and cultural change, women in particular are also less likely than in the past to primarily self-identify in terms of traditional familial roles, and wish to maintain multiple identities (including caregiver) simultaneously. Other research indicates this phenomenon may be most salient in North American culture, for instance, in contrast to Japanese (Wallhagen and Yamamoto-Mitani 2006) and other ethno-cultural groups of carers (Martin 2000). Some suggest that when a person does not expect caregiving as a part of their normal life course, this is associated with higher perceived stress and burden and reduced satisfaction among those providing family care (Martin 2000; Kirsi et al. 2000). Complicating the interpretation of research findings, however, is an apparent lack of consensus in the literature about whether the perception of care for older family members as natural and expected facilitates or impedes self-identification as a caregiver.

Identities are social – people internally negotiate their own identities in ways that are informed by their social contexts, and identities can be supported or not (or even stigmatized) by external others (Carpentier 2012; O’Connor 2007). Indeed, “individuals may be unaware of the label but through interactions with others, they develop an awareness and eventual identity related to caregiving” (Eifert et al. 2015: 364). The now-classic work by Finch and Mason (1993) demonstrated how women making initial decisions to care often developed “caring” or “responsible” reputations that served to reinforce the tendency for them to be viewed by others as the appropriate caregiver in the family.

Sabat (2002, 2010) emphasizes that identity construction in persons with dementia and family caregivers is interdependent; caregiver identity development is shaped by and shapes relational connections between individuals, as roles and normative responsibilities in relation to one another change with the onset of illness and care provision (Eifert et al. 2015; Goldsteen et al. 2007; Hayes et al. 2009). In this process, gendered and culturally specific expectations that shape understandings in families of who should do what, and for whom, become salient (Eifert et al. 2015). If the other person in the relationship can no longer perform their role (e.g., as parent, spouse), this may also motivate identity shifts among caregivers (Eifert et al. 2015). Caregiver identity may also develop when family members develop an intense sense of responsibility vis a vis other network members, for instance, when they do not trust other family members or professionals to provide competent care (Goldsteen et al. 2007; Henderson 2001).

Caregiver identities can exist alongside other role identities in one individual, and caregiver activities can shape these other role identities in important ways (e.g., Calasanti and Bowen 2006; Heward et al. 2011). Yet Eifert et al. (2015) suggest that when care provision intensifies and leaves little time for other roles, previous self-identities are eroded, and caregiver identities may be developed to fill the void: “individuals do not just gain a new identity as a caregiver but see previous identities fade away or become less relevant because of caring responsibilities” (360). Building on early work on self-identity loss when intensively caring for persons with dementia (and subsequent risks to psychological wellbeing and self-esteem: Skaff and Pearlin 1992), scholars have examined how people might preserve or adjust self-identities during care provision (e.g., Perry 2002; Karner and Bobitt-Zeher 2005; Sabat 2010).

Many believe that caregivers should be encouraged to develop a caregiver identity, to facilitate their access to and use of supportive formal services (Andreasson et al. 2018). For example, this may help them recognize their own needs as independent from those of the care recipient (Dobrof and Ebenstein 2003; Harding and Higginson 2001; Henderson 2001; Paoletti 2002). However, the evidence is not entirely clear, since overly strong identification with a caregiver role might equally promote caregiver need minimization or suppression, for instance, as caregivers strive to protect the identity of the care recipient (Moore and Gillespie 2014).

Caregiver self-identification has also been suggested to promote an empowering “sense of belonging and connection to a broader community” (O’Connor 2007: 165) and potentially reduce caregiving stress (Montgomery and Kosloski 2009). In contrast, Sabat (2010) recommends that caregivers’ network members should reinforce their originally existing valued self-identities that have been threatened by the onset of care, preventing engulfment within a role that is arguably devalued within broader social structures. Recent work by Riley et al. (2018) further suggests a need to protect spousal caregivers’ preexisting relational identities with their partner. Moreover, when caregivers are prompted to adopt a caregiver identity (especially as a dominant role), this can involve difficult emotions (discomfort, ambivalence) and may entail emotion work especially for those who do not wish to self-identify (O’Connor 2007; Molyneaux et al. 2011). O’Connor (2007) also concludes that overly strong caregiver identification may inadvertently result in marginalizing or eroding the sense of identity of care recipients (see also Eifert et al. 2015).

Examples of Application

That many family caregivers do not self-identify is a methodological concern (since caregiving research tends to recruit self-identified caregivers), as well as a challenge for advocates for those who want to make unpaid work more visible and valued.

Ultimately however, academic and policy interest in caregiver identity has been driven by an interest in how identity might shape or contribute to caregiving behavior (Eifert et al. 2015). However, Caregiving Identity Theory proposes that behaviors or practices also shape identities (Montgomery and Kosloski 2009). Research in this area is also important because of concern for how caregiver identity may be connected to well-being and caregiver outcomes, whether through the stress generated when identities do not match behavior, or through unmet needs and problems accessing supportive services. Increasing concern with the latter has informed the development of caregiver assessment tools for use in clinical practice. These tools are in part intended to encourage caregivers if not to self-identify, to at least to recognize their own distinct role and needs. The use of one such tool, the USA-based TCARE protocol, led to lower identity discrepancy and stress burden in caregivers (Kwak et al. 2011). Other similar tools have had variable results, with more evaluations focusing more on the impact on professionals (Aoun et al. 2015; Keefe et al. 2008). More generally, however, existing research on caregiver self-identification points to the need for caregiver support programs to focus outreach efforts on those who may not self-define as caregivers, as well as those who do (Corden and Hirst 2011; Dobrof and Ebenstein 2003).

Future Directions of Research

There is much still unknown about caregiver identity development and how this varies over time and in relation to particular relationships, families, and societal contexts. In-depth and mixed-methods research into the processes and effects of self-identification in different groups is needed, so as to address discrepancies in existing research. Connections between self-identification, role expectedness, and caregiver satisfaction and well-being need to be further explored in ways that account for the simultaneous existence of other, potentially competing role identities among caregivers. Future qualitative research also should focus on how caregiver self-identification is expressed (or not) in talk about the entire life course. For instance, Miller et al. (2008) explored how caregivers drew on past parenting and intergenerational transmission narratives when interpreting their current caregiving identities. They also imbued their caregiver identities with a sense of competence derived from previous family and work experiences. Such meaning-making processes in relation to identity may provide insights into how best to support caregivers. In addition, more exploration is needed of how external others (especially health care practitioners) define and shape carers’ identities in face-to-face interactions. Quantitative methods can also contribute to developing measures of carer role identification that would allow for testing links between identification, norms, care behaviors, and outcomes.

Summary

In contrast to research into caregiving role enactment, caregiver identity research focuses on what people think they should or should not (or will or will not) do for friends and family members in need of long-term support, and whether and how these expectations, internalized within particular role identities, shape caregiver interpretations of their experiences and their future well-being. Theoretically and practically, the issue of family caregiver identity is particularly complex and necessitates a considerable expansion of research in this area.

Cross-References

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Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Department of Sociology and CriminologyUniversity of ManitobaWinnipegCanada

Section editors and affiliations

  • Neena L. Chappell
    • 1
  1. 1.Institute on Aging and Lifelong Health, Department of SociologyUniversity of VictoriaVictoriaCanada