Introduction

Grief is widely recognized as one of the most painful universal experiences that profoundly impacts us (Gross, 2016; Howarth, 2011; Worden, 2009). Its uniqueness lies in the vast range in presentation, with grief manifesting through emotional, cognitive, behavioral, spiritual, as well as physical symptomatology (Doka, 2002; Gross, 2016; Lindemann, 1944; Worden, 2009). The grieving process that follows is regarded as a “relational process” (Neimeyer & Jordan, 2002, p. 95), during which we redefine the bonds held with the deceased or source of loss while drawing consolation and encouragement from our existing social network (Worden, 2009). While these relationships can be a strong source of support during bereavement, they can also be detrimental to those grieving when their social support denies them the right to engage in grieving (Doka, 1989). Disenfranchised grief is defined as “…grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported” (Doka, 1989, p. 4). According to Doka (1989, 2002), social support and validation is withheld from the grieving individual because their loss is not viewed as warranting grief.

The ongoing discussion preceding the proposal of grief-related disorders, such as prolonged grief disorder and persistent complex bereavement disorder, has stimulated continued debate on the boundaries between normative and nonnormative grief (Maciejewski, Maercker, Boelen, & Prigerson, 2016). Closer examination of these boundaries has led to attempts to specify circumstances and situations where complications in functioning and adapting to life post-loss are present (Gross, 2016; Worden, 2009). Physical symptomatology has been regarded as a particular facet of the grieving process that is “often overlooked” (Worden, 2009, p. 23). While most individuals are able to adjust after experiencing loss, there are those that require additional guidance through this process (Parkes, 2011). Disenfranchised grief has been identified as a form of grief that possesses such complications, including potential physical manifestations that may go unnoticed or excluded from consideration (Doka, 1989, 2002).

The current body of literature outlines and describes what qualifies as disenfranchised grief, in addition to identifying the societal and cultural underpinnings of this problem (Doka, 1989, 2002). The literature largely consists of examples and narrative accounts of specific forms, circumstances, and situations in which disenfranchised grief is present (Aloi, 2011; Doka, 1989, 2002; Dwyer & Miller, 1996; Jones & Beck, 2006; Packman, Carmack, Katz, Carlos, Field, & Landers, 2014; Spidell, Wallace, Carmak, Nogueras-González, Parker, & Cantor, 2011). However, the existing literature lacks an overarching description of the phenomenon’s subjective experience as a whole; the embodied, or physical effects, characterized by disenfranchised grief as well as its clinical presentation, both remain gaps in the research.

This study initiated examination of disenfranchised grief as a phenomenon by investigating how clients’ lived experiences of disenfranchised grief are perceived by dance/movement therapists during the therapeutic process in dance/movement therapy (DMT). As body-based clinicians, dance/movement therapists have unique training that allows them to be acutely aware of how life experiences, such as grief, are present within the body and are illustrated through movement (Callahan, 2011). This study was guided by the research question: How is the lived experience of disenfranchised grief experienced by dance/movement therapists who work with clients experiencing disenfranchised grief? The following literature review opens with a discussion of culture’s inherent role within this phenomenon. The concept of disenfranchised grief is briefly elucidated, accompanied by an overview of social factors fueling the phenomenon and how the experience of disenfranchised grief is currently described within the literature. Lastly, the literature on DMT and grief is reviewed.

Literature Review

Cultural Context of Grief

Among the many factors that influence the experience of grief and bereavement, culture is the most central in shaping how we process and respond to loss (Neimeyer & Harris, 2011). While grief is frequently emphasized within the literature as highly individualized (Doka, 2016; Gross, 2016; Neimeyer & Harris, 2011; Worden, 2009), society still provides a “uniform set of instructions” that dictate both the internal and external expressions of grief (Konigsberg, 2011, p. 15). Grief is viewed as appropriate and acceptable as long as the process of adapting to loss adheres to the social parameters, or “grieving rules” (Doka & Martin, 2002, p. 338), dictated by each respective culture (Neimeyer & Harris, 2011). From this understanding, culture serves as the governing body that “polices grief” (Neimeyer & Harris, 2011, p. 344). When grieving deviates from these norms and expectations, an individual may encounter disapproval or loss of validation and support from others; disenfranchised grief is a potential consequence of this deviation (Doka, 1989, 2002; Doka & Martin, 2002; Neimeyer & Harris, 2011). Therefore, it is important to bear in mind that disenfranchised grief is a social phenomenon and cannot be examined outside of the cultural context. This literature review utilizes the framework pioneered by Doka (1989, 2002) to understand the scope of disenfranchised grief, while briefly acknowledging subsequent research that has expanded upon this topic.

Disenfranchised Grief

Doka’s (1989) comparison of heterosexual and homosexual grief experiences during the 1980s drew attention and ensuing discussion within the field of grief and bereavement on grieving situations lacking social recognition. Rising concern and stigma surrounding homosexual relationships during the subsequent AIDS epidemic only further illuminated the lack of social support for affected grieving individuals (Doka, 1989). As this phenomenon crystallized, it was formally distinguished as “disenfranchised grief” and recognized as grief that is not socially supported or viewed as acceptable (Doka, 1989, p. 4; Doka, 2002). Disenfranchised grief was initially conceptualized as occurring within three categories: unrecognized relationships, losses, and grievers (Doka, 1989), with subsequent inclusion of two additional categories: circumstances of the death, and ways of grieving (Doka, 2002).

Disenfranchised grief is regarded as an experience that complicates otherwise normative bereavement (Rando, 1993). Doka’s (1989, 2002) appraisal of its impact asserts disenfranchisement as inherently problematic due to the removed or minimized social support for the bereaved. Thus, the existing grief and related emotions can be exacerbated with disenfranchisement, and even more so if additional crises, ambivalent relationships and feelings (Doka, 1989, 2002), or trauma are involved (Worden, 2009). Resulting effects may be evident through intensified emotional reactions, the inability to access or engage in mourning practices, the inability to utilize sources of comfort (Doka, 1989, 2002), and increased isolation (Kauffman, 2002). Self-blame or self-destructive tendencies may emerge if individuals become conflicted with their grief and internalize their disenfranchisement (Kauffman, 2002). These factors are suggested as having the potential to interfere with individuals’ abilities to fully process and resolve their grief (Doka, 1989, 2002). Disenfranchised grief has since been recognized as a contributing factor (McNutt & Yakushko, 2013) and risk factor for complicated grief (Gross, 2016).

Social/Cultural Factors

Specific actions have been associated with causing disenfranchised grief. A consistent theme across experiences within the literature shows a lack of validation and support from the individual’s social support system (Baum & Negbi, 2013; Jones & Beck, 2006; Lang, Fleiszer, Duhamel, Sword, Gilbert, & Corsini-Munt, 2011; Mulvihill & Walsh, 2014; Packman et al., 2014). In some instances, the significance of the loss was not recognized (Jones & Beck, 2006; Lang et al., 2011; Mulvihill & Walsh, 2014; Packman et al., 2014). The availability of outlets for grief expression felt limited for affected individuals (Packman et al., 2014), with some experiencing complete unavailability of support in extreme cases (Jones & Beck, 2006; Mulvihill & Walsh, 2014). There was consistency among researchers referring to this lack of social support as an empathic failure (Packman et al., 2014; Piazza-Bonin, Neimeyer, Burke, McDevitt-Murphy, & Young, 2015). Researchers Sobel and Cowan (2003) and Piazza-Bonin et al. (2015) provided unique insight on the perpetrating end of disenfranchisement by identifying the presence of others’ uncertainty in how to support bereaved individuals, in addition to a lack of willingness to continue supporting the bereaved. A lack of understanding may contribute to the overall avoidance of attempting to provide support for those bereaved (Jones & Beck, 2006; Lang et al., 2011; Mulvihill & Walsh, 2014; Packman et al., 2014).

Differing expectations regarding the grieving process, including appropriate reactions, behaviors, and length of time, appeared to be strong motivators behind the social disapproval of grief (Lang et al., 2011). Piazza-Bonin et al. (2015) noted the gradual withdrawal of social support in passive ways such as people avoiding or abruptly ceasing communication, in addition to more active ways including voicing disapproval of the individual’s continued grief and their expectation for bereaved individuals to resume their previous roles. Disenfranchisement was observed when the bereaved were unable to fulfill that expectation (Piazza-Bonin et al., 2015).

Minimization of grief also comes from community members as demonstrated in the case of losing a family member to execution, in which individuals experienced isolation from their community (Jones & Beck, 2006). Their grief was greeted with contempt by others, along with extreme social backlash in the form of outward displays of aggression directed towards them, including “vehicles being shot up, jobs lost, human feces left on doorsteps, and children being asked to leave their middle school” (Jones & Beck, 2006, p. 293). Compared with other instances of disenfranchised grief not involving such violent acts, the motivation for refraining from grief also served a protective purpose (Jones & Beck, 2006). Specific cases involving stigmatized loss, such as the court-ordered removal of children from the home, were accompanied by blaming and shaming from people within their social support system and larger community (Baum & Negbi, 2013).

Subjective Experience

Literature examples of disenfranchised grief provide glimpses of the subjective experience, which has been regarded as “manifold” (Jones & Beck, 2006, p. 296) with its impact permeating “emotional, spiritual, physical, psychological, and practical” dimensions (Packman et al., 2014, p. 345). Disenfranchised grief was found to be accompanied by strong physical and emotional reactions (Lang et al., 2011), with an intensity described as debilitating (Packman et al., 2014). Emotions vary between shock, devastation, depression, anger, and high levels of distress (Mulvihill & Walsh, 2014). Additionally, disenfranchised grievers reported feeling a sense of isolation (Baum & Negbi, 2013; Lang et al., 2011), loneliness (Doughty Horn, Crews, Guryan, & Katsilometes, 2016), and even abandonment (Packman et al., 2014; Piazza-Bonin et al., 2015). There was consistency in the desire to be understood (Baum & Negbi, 2013; Doughy Horn et al., 2016), and many individuals were left frustrated with the inability to be understood by others (Baum & Negbi, 2013). For some, the intensity of grief reached clinically significant levels for depression and suicidality (Packman et al., 2014). The depth of their grief was reflected in the vivid descriptions often used to describe their experiences such as “gaping hole in my heart” (Packman et al., 2014, p. 346). In circumstances in which a death was involved, the closeness of the relationship has been suggested as influencing the degree to which the disenfranchisement negatively affected the individual (St. Clair, 2013), including the relationship with that of a pet (Cordaro, 2012; Packman et al., 2014). Researchers Baum and Negbi (2013) in addition to Lang et al. (2011) identified disenfranchised grief as interfering with psychological wellbeing and grief resolution.

Generalized pain was also reported and varied between emotional and physical manifestations (Packman et al., 2014). Disenfranchised grievers experienced a strong sense of guilt and regret, particularly when feeling a sense of responsibility in the loss (Baum & Negbi, 2013; Packman et al., 2014; Sobel & Cowan, 2003). Self-blame (Baum & Negbi, 2013; Mulvihill & Walsh, 2014) and self-loathing were also present (Sobel & Cowan, 2003). In one instance, this internalized guilt and shame led to withdrawal and isolation from others (Piazza-Bonin et al., 2015). Some individuals that experienced social blaming as a result of their loss identified these accusations as directly causing their intense emotional reactions (Baum & Negbi, 2013). In one instance, feeling unrecognized by others led to questioning one’s existence (Doughty Horn et al., 2016).

Differing views within interpersonal relationships regarding the experience and process of grieving may prompt relational complications and tensions, including growing frustrated and becoming emotionally distant from one another (Lang et al., 2011). Experiencing disenfranchised grief can negatively impact individuals’ subsequent approach towards seeking support, as disenfranchisement encourages the privatization of grief (Lang et al., 2011; Packman et al., 2014) and elicits hesitation or refraining from sharing one’s grief entirely (Jones & Beck, 2006; Packman et al., 2014). Although the global subjective experience of disenfranchised grief remains undefined, DMT has the potential to describe the physical effects of stigmatized and socially unsupported experiences (Roberts, 2016).

Dance/Movement Therapy and Grief

Dance/movement therapy is grounded in the understanding that the body is not only a receiver and processor, but a physical embodiment of the experiences we endure (Levy, 2005), including that of grief (Philpott, 2013; Simpkins & Myers-Coffman, 2017). Early research has provided evidence for grief manifesting somatic reactions. Lindemann (1944) entitled this experience as “somatic distress” that presents intermittently in wave-like occurrences (p. 141). Physical sensations involved may range from muscle tension or weakness, headaches, depersonalization, lack of energy, “respiratory disturbance” characterized by breathlessness, in addition to tightness in specific areas of the body such as the chest and throat (Lindemann, 1944, p. 141; Worden, 2009). More recently, the somatic experience through embodiment and physical sensations has been recognized as illustrative of how we naturally process and remember our experiences of grief (Simpkins & Myers-Coffman, 2017).

Research on DMT and grief remains limited and has predominantly concentrated on the use of DMT as a therapeutic approach (Baum, 2013; Callahan, 2011; Philpott, 2013). Movement interventions harnessing creative nonverbal expression of grief and related emotions remain the predominant focus of discourse regarding DMT and bereavement (Akunna, 2015; Callahan, 2011, 2014; Larsen, 2014; Larsen & Young, 2014; Smith, 2014). Although disenfranchised grief is an uninvestigated area within the DMT literature, neighboring forms of grief have been examined. Callahan (2011) investigated how DMT could serve as an active facilitator of the grieving process for bereaved parents experiencing complicated grief. This study unveiled the temporary body-mind disconnect and increased body tension that can occur for bereaved parents (Callahan, 2011). Baum’s (2013) work further uncovered the complexity of grief and its presentation with developmentally delayed children and their caregivers, leading to her proposal of grief as palpable and not always visible. The somatic symptoms of grief appear to house a wealth of information that may greatly inform the subjective experience of grief and what may be needed within the therapeutic process (Philpott, 2013; Simpkins & Myers-Coffman, 2017). Philpott (2013) attempted to capture this through interviewing dance/movement therapists regarding their clinical work with grieving children. Results revealed that the subjective experiences of dance/movement therapists, specifically their own emotional and somatic responses, are important in contextualizing the therapeutic process and informing clinical interventions. Simpkins and Myers-Coffman’s (2017) more recent research on body memory and continuing bonds highlights the body’s integral role in the relationship we continue to have with our grieving experience across time, in addition to our increasing our ability to adapt to life post-loss (Simpkins & Myers-Coffman, 2017).

Roberts (2016) initiated needed discussion regarding the potential negative somatic impact of concealable stigmas and the potential for DMT in examining, describing, and addressing these impacts. While disenfranchised grief may not be characterized as a trait or necessarily derive from stigma, grief is an inherent part of our human experience and an extension of our identities (Gross, 2016; Worden, 2009). Consistencies can be drawn among these experiences with the presence of social discrimination, rejection, and discouragement of expression of highly personal experiences (Corr, 2002; Doka, 2002; Doka & Martin, 2002).

Summary

Much of the current literature on disenfranchised grief has focused on expanding the breadth of the phenomenon by directing attention to specific forms of loss that may fit the criteria of disenfranchised grief (Thornton & Zanich, 2002). The predominantly theoretical examination of this concept has assisted with crystallizing the experience (Thornton & Zanich, 2002). However, much of the literature is limited in the capacity that it does not seek to identify the overarching experience of disenfranchised grief. The identified effects are suggested within the context of particular forms of disenfranchised grief as opposed to identifying consistent themes and qualities across experiences of disenfranchised grief. The principal investigator argues that the body-based approach ingrained within DMT provides a specialized framework for examining how disenfranchised grief affects grieving individuals. This study attempts to utilize the clinical experiences of dance/movement therapists to capture the lived experiences of clients’ disenfranchised grief, including the embodied presentation and therapeutic process of working with clients experiencing this form of grief.

Methods

Methodology

This study employs a transcendental phenomenological methodology to understand how clients’ lived experiences of disenfranchised grief are present during the therapeutic process in dance/movement therapy. The purpose of transcendental phenomenology lies in capturing the lived experience or essence of a phenomenon through subjective accounts of the experience in question (Creswell, 2013). An epoché precedes the investigative process and involves bracketing the researcher’s personal experience of the phenomenon to identify any preconceived notions or biases (Creswell, 2013; Moustakas, 1994). Doing so supports transcendental phenomenology’s fundamental objective of removing the researcher as the informing source of the phenomenon so that it can be investigated “freshly” with only the participants’ information illustrating the experience of the phenomenon (Moustakas, 1994, p. 33).

Participants

The participants in this study included four R-DMT or BC-DMT credentialed dance/movement therapists who self-identified as having current or previous professional experience working with clients experiencing disenfranchised grief. Further inclusion criteria required that they understand the phenomenon as operationally defined in this study and were willing to be video recorded during the data collection process. Participants were recruited through two online avenues: the American Dance Therapy Association Member’s Forum on the association website and email invitations to dance/movement therapists within the principal investigator’s professional network. The latter was the only successful recruitment method to produce participants. Additional demographic information to consider is that participants identified themselves as female, ages 20–50s, and were from the Midwest region of the US. Each participant was assigned a pseudonym identified by the principal investigator as a protective measure against identification. Due to the small community of dance/movement therapists and the related risk of identifying those involved, further demographic information has been withheld in order to preserve the confidentiality of the participants’ identities. For this reason, there is little reference throughout this study to the client populations with which the participants work. However, the clinical experiences referenced in each interview were based on DMT with child, adolescent, and adult clients, and each qualified as a vulnerable population (Aday, 2001).

Procedure

Prior to beginning the interview process, the principal investigator engaged in the epoché process by conducting a self-interview utilizing the same interview questions employed within the data collection process for participants (Moustakas, 1994). These responses were analyzed and then referenced throughout data analysis for the purpose of monitoring bias. Informed consent was obtained from each participant prior to beginning data collection. Data were collected from each participant individually through semi-structured interviews that were 1–2 h in duration. Interviews were held in a private professional location that was mutually agreed upon by the participant and principal investigator. Each interview was video recorded using a camcorder, and then transcribed by the principal investigator. A continued relationship with the participants was maintained for the purpose of asking additional questions for clarification or further elaboration and member checking (Mertens, 2005).

Data Analysis and Validation Strategies

Each transcript was analyzed individually using Moustakas’ (1994) modification of the Stevick–Colaizzi–Keen interview analysis method. The first step included obtaining the breadth of each participants’ clinical experience working with disenfranchised grief via the semi-structured interviews. Meaningful and descriptive statements related to their clients’ experience of disenfranchised grief were drawn out of each transcript and clustered together to form themes (Creswell, 2013; Moustakas, 1994). These themes were organized into a textural description highlighting the “what” of their experience or a structural description highlighting the “how” of the experience (Moustakas, 1994, pp. 120–121). The textural and structural descriptions were then synthesized into a textural-structural description capturing the essence of the participant’s experience. This process was repeated for each participant, and culminated in a “composite textural-structural description” that produced a comprehensive understanding of the clinical experience of working with clients experiencing disenfranchised grief (Moustakas, 1994, p. 122). Prior to compiling the composite textural-structural description, member checking was utilized as a validation strategy to gain insight into the accuracy and significance of the themes that emerged in each textural-structural description (Creswell, 2013). The primary investigator’s epoché was also utilized in this stage as a means of returning to any biases to assess how they were informing final interpretations.

Results

Several textural and structural themes were identified across all four participants’ descriptions as illustrating the phenomenon of disenfranchised grief throughout the therapeutic process. The textures and structures are strongly interrelated in the way that they influence and inform one another; Fig. 1 provides a diagram that visually elucidates this connection. The diagram consists of several layers with the outermost layer consisting of the structure that underlies all themes involved. The subsequent layer includes textural qualities describing the global experience of disenfranchised grief, which is followed by textural and structural themes involved in the therapeutic process located within the innermost layer.

Fig. 1
figure 1

Composite textural and structural themes that emerged as well as their interrelatedness

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Social/Cultural Factors

Social and cultural factors held the most fundamental role in fueling the phenomenon of disenfranchised grief and shaping how it was experienced by each client and participant. Data analysis revealed three subthemes that collectively delineate the components and complications found to be characteristic of this form of grief; these include the lack of social support, restrictive social perceptions, and social grieving parameters. Participants reported a lack of social support within their clients’ social network:—“people were blaming him for the death…he felt like he couldn’t talk to anyone.” Aside from verbal statements of disapproval, nonverbal forms of relational distancing occurred, “they isolated him; they didn’t want to connect with him anymore.” Restrictive social perceptions magnified the lack of support and also negatively impacted how their clients’ loss and subsequent coping was viewed, “this person is off…too much…difficult,” and treated by others, “if you’re a man, [you’re] not supposed to cry about it.” Lastly, the imposition of parameters around grief was evident across client experiences. One participant described these cultural factors in the following way: “If you express your grief in an angry way and you’re Black, then you’re written off as the angry Black woman. Your grief is not even acknowledged, especially if the way that you deal with it is through anger.”

Overarching Characteristics

Five textures were identified as describing the overarching qualities inherent in the experience of disenfranchised grief: complex, pervasive, unrecognized, disconnecting, and overwhelming. Disenfranchised grief is a complex phenomenon with many interrelated factors at play as one participant reported: “it’s so layered.” It is pervasive in the way that it extends throughout the clients’ lives and grieving experiences, and in how it has the potential to be experienced by the dance/movement therapist. One participant described it as “this domino effect of silence and shaming.” Disenfranchised grief is unrecognized in that it is unsupported or invalidated by others:—“They feel it but they’ve been told it doesn’t matter.” Disconnecting is the texture that highlights the isolating nature of disenfranchised grief resulting from the severed relationships within the clients’ social support system as well as from themselves, evidenced by “disconnect from the body” and “not wanting to even be in my skin.” The phenomenon of disenfranchised grief was also identified as overwhelming due to the intense nature of the experience. This was reflected in statements such as, “It kind of takes over their soul” and “It just consumes.”

Exacerbated Grief

A consistent texture across participants’ experiences with clients was the presence of exacerbated grief as a result of their disenfranchisement. Exacerbated grief was characterized by an embodied presentation, difficult emotions, and strong behavioral/emotional reactions. Each client’s physical presentation appeared to embody their experience of disenfranchisement, specifically through distinct holding patterns within their body. Holding patterns were evident through bound flow, muscle tension, and rigidity in the spine and body posture, as one participant described her client appearing “burdened” while demonstrating the “retreated and sunken, concaved upper chest” and “drooping…head and neck.” Breathing was very shallow and appeared “stuck” inside the body. One participant recounted her client’s experience as, “He would take big gasps of breath and it wasn’t really flowing.” Exacerbated grief elicited the presence of difficult emotions, including anger, shame, guilt, fear, and hopelessness. A pattern of strong behavioral/emotional reactions stemmed from the exacerbated grief which took two forms: imploding (internal) or exploding (external). Behavioral reactions include “…increase in aggression, isolation, depression; more reactive.” External reactions were characterized as impulsive and out of control, “unexpected,” while internal reactions involved severe withdrawal, appearing through “stillness” and/or detachment from self and environment. Both reactions were reported as observed with accompanying maladaptive attempts at coping through self-destructive behaviors such as self-injury, suicide attempts, and overdose.

Heightened Kinesthetic Empathy and Somatic Countertransference

The participants’ responses to working with clients experiencing disenfranchised grief are illustrated through the structure of heightened kinesthetic empathy and somatic countertransference. Disenfranchised grief was described as having a contagious quality: “It’s hard not to take on; It’s hard to get rid of.” Participants strongly empathized with their clients and reported feeling highly receptive to their emotional and somatic experiences as evidenced by the vivid somatic “sensations that were quite palpable of the sadness,” “…like my body was crying for him,” “it felt like it really enveloped my whole body.” Other times, the participants experienced emotional and somatic responses resembling their clients’ experiences that lingered in the body. As a result, participants felt overwhelmed and depleted. One participant described her experience as resulting in extreme immobilizing fatigue: “I’ve come home sometimes and fallen over on my couch and then not been able to get up until the next day because I just can’t really move my limbs.” Three of the participants reported feeling burnout symptoms and desensitized to disenfranchised grief. This was accompanied by experiences of disconnection within the body similar to that of their clients.

Therapeutic Movement Relationship

The therapeutic movement relationship is a structure that was considered integral throughout the therapeutic process, “it’s everything, it’s the container.” The body in relationship served as the primary tool of re-establishing connection and provided the opportunity for expression and validation of disenfranchised grief:—“I think the therapeutic movement relationship in itself helped to rebuild those connections and the want to actually connect with other people.” This experience was highly demanding on each participant’s ability to be present during sessions, “it’s very hard to be present.” Participants’ reported that the therapeutic movement relationship may be more challenging to establish with clients experiencing disenfranchised grief, “it took a lot of time building safety and relationship,” yet invaluable to clients once established. The participants’ role served as a source of stability, organization, and support for their clients to ground themselves, as reflected in one participant’s statements: “My first instinct is to try to anchor” and “to be that conscience, to try to bring it back to who they are in the moment.”

Distinct Form of Grief

Disenfranchised grief was defined as texturally distinct for several reasons. First, the clients were referred for secondary symptoms as opposed to grief. Often these secondary symptoms were behaviors or forms of emotional expression, or lack thereof, that were considered problematic. Secondly, the therapeutic process was identified as more clinically challenging in that it was harder to access, express, and explore: “it’s harder to do the work.” Clients often maintained an external focus on the disenfranchisement or its source instead of focusing on the grief from their original loss, which impacted their ability to process and adapt to their loss. Thus, the grieving process was described as hindered, “You’re not going to be able to grieve in that fluid way.” Participants also attributed the distinctiveness to the intensity and heightened emotionally taxing nature involved: “I mean there’s despair with the grieving process anyway but I feel like it’s more torturous.” Thirdly, the lingering quality and physical pain sometimes accompanying the participants’ somatic countertransference was identified as unique to this form of grief, in addition to the lack of clarity in their body sensations as described as, “overall confusion” when “my body was trying to figure out what was happening.” Lastly, the presence of masked grief also characterized this phenomenon as distinct. Clients’ grief reactions impaired their normal functioning, and they lacked awareness of the connection between their grief and their symptoms and behaviors, as evidenced through client statements such as, “I just know that I’m angry all the time, I can’t control it,” and participant reports: “They’re so disconnected from what’s going on within them[selves], they won’t label or express it as what it is…they won’t connect it.”

Biopsychosocial and Movement Goals and Focus

Treatment goals addressing the clients’ presenting symptoms and behaviors took precedence before processing their loss and related grief. The focus of therapy was predominantly centered on increasing self-awareness and strengthening the client’s ability to self-regulate. Corresponding movement goals included increasing body awareness and connection with the body. This was emphasized through increasing stability and grounding within the body in order to establish a greater sense of control and management of their somatic reactions. Participants identified psychoeducation as a main component of therapy which included topics such as coping skills, emotion identification, impulse control, anger management, and relationship building, as well as healthy and effective modes of verbal and nonverbal expression. In addition to processing the grief from the original loss, processing and coping with the disenfranchisement was also a focus in therapy. The focus of therapy also included providing a platform for the expression of grief through avenues such as telling one’s story, engaging in cultural mourning practices, and increasing positive connection and social support. Furthermore, strengthening self-esteem, self-efficacy, and resiliency was incorporated to combat the negative impact of internalizing the disenfranchisement and reinstating a sense of agency over their grief.

Dance/Movement Therapy Approach and Interventions

Results showed consistencies in the use of structured interventions and structured improvisation among participants’ approaches in dance/movement therapy. Guided facilitation coupled with intention and flexibility, provided clients with choice and direction during movement experientials. This structure cultivated encouragement and fostered creative expression and exploration. Dance/movement therapy interventions were often “tangible” and stabilizing in order to foster a greater sense of connection and agency over the body—“a lot of work with space, using the dimensional scale, helping him develop a sense of stability.” Participants utilized attunement with the five senses, breathing techniques, and props to assist in grounding the clients in the present moment. Interventions were presented in a manner that was inviting, safe, and trauma informed: “I never say ‘okay now we’re going to recreate the person’s funeral. It’s never that direct.” However, interventions to support memorializing, such as rituals, were utilized when they organically emerged. Clients were provided the option to utilize symbolic movement to represent their messages or pain during moments when feeling unsafe to verbally discuss their disenfranchised grief in groups.

Positive Impact of Dance/Movement Therapy

Participants regarded dance/movement therapy as beneficial for their clients through the provided outlet to express and explore their grief and disenfranchisement. This resulted in increased awareness of the connection between their symptoms and disenfranchised grief—“When we started to get into his narrative he realized it’s like…I have all of these deaths that I wasn’t able to process.” Clients demonstrated stronger body awareness and connection in the body with an increased sense of stability also reflected in their temperament: “There was more of a grounded sense to feeling his personality than what had been there before.” The emphasis on acknowledging individuality and recognizing self-worth, “when they’re able to talk about things that interest them or their genuine self,” elicited increased engagement and investment in participation during groups. One participant shared how a client stated that DMT helped him the most in reassembling his life. Dance/movement therapy was effectively utilized to address the negative impacts of disenfranchisement by positively contributing to each client’s life in a variety of ways that were otherwise absent.

Discussion

This study set out to identify how dance/movement therapists perceive their clients’ lived experiences of disenfranchised grief within the context of dance/movement therapy. Results elicited qualitative information that provided an essence of the dance/movement therapists’ understanding of their clients’ disenfranchised grief. All textural and structural themes were found to be strongly interrelated; thus, individual consideration is impossible without undermining the breadth of each theme.

Results support what is recognized in the literature, specifically regarding the recognition of the socio-cultural context as the most defining factor in how grief and bereavement are experienced, in addition to being the platform through which the disenfranchisement of grief occurs (Doka, 1989, 2002; Doka & Martin, 2002; Gross, 2016). As regarded in experiences of normative grief (Doka, 2002; Lindemann, 1944; Simpkins & Myers-Coffman, 2017), disenfranchised grief was also strongly embodied and distinctly evident throughout the participants’ movement observations. The overarching textural themes—complex, pervasive, unrecognized, disconnecting, and overwhelming—illustrate the nature of these factors while simultaneously describing the qualitative manner in which the social and cultural factors influence the experience of disenfranchised grief.

The cultural contexts consisted of the clients’ social network as well as the facility or system where treatment took place. The impact was two-fold. For clients without social support and the opportunity to express themselves, the grief became confined within them and prevented engagement in their authentic grieving process or ability to utilize “sources of solace” (Doka, 2002, p. 18), —a characteristic of disenfranchised grief (Corr & Corr, 2013; Doka, 2002). One participant described the parameters placed around the clients’ grief as resulting in being “forced to deal with loss and grief based on how the system tells them to move on.” The grief remained inside the client until triggered by some negative event or thought process that roused the disenfranchised grief and the overwhelming nature of it would take over and result in “loss of control in the body,” “extreme lability” in mood, and “not being able to access executive functioning.” Unable to contain it any longer, it poured out in destructive ways that were difficult to mitigate, as one participant described: “sometimes he would just break a computer.” This finding reinforces the literature’s support that disenfranchisement may exacerbate grief and can be demonstrated through intensified emotional reactions (Doka, 1989, 2002).

The clients lacked awareness and understanding regarding the connection between their embodied experience and disenfranchised grief, as one participant’s client reported: “I just know that I’m angry all the time I can’t control it.” Another participant identified the disconnection as so severe that it impacted the client’s ability to engage in the therapeutic process — “they’re so disconnected from what’s going on with them[selves], they won’t label or express it as what it is…they won’t connect it.” The clients’ strong behavioral and emotional reactions appear to stem from the heightened complexity of the situation, as demonstrated by some clients who were unable to engage in mourning practices or mourn with their community (Doka, 1989, 2002). This study deepens the scope of the observable impact of disenfranchisement on clients to include nonverbal behavior and/or body posturing that is congruent with their experiences of censorship, such as holding patterns and a disconnection from one’s body/mind experience (Callahan, 2011; Roberts, 2016). Participants observed this confined grief as tangible and observable within the body, which corroborated the textural theme of the necessity of an outlet for grief:—“I could see that there was something that wanted to come out, it was almost as if it was waiting, like for some sort of release.” Participants’ clients were also noted to be emotionally distressed by the strong behavioral and emotional reactions that emerged: “he didn’t like it” and “it was very scary for him, because it was putting him in danger and others in danger at times.”

For the participants, social and cultural factors contributed to the increased sense of responsibility and effort required throughout the therapeutic process: “Who else is going to create space for this disenfranchised grief if I don’t do it.” Social views held within the work environment influenced their experience with particular clients, as one participant reported, “with grief that is acceptable…I know I can comfort and I can also honor and I won’t get eyes on me like ‘come on, you have a lot of other clients that you need to be focusing on.’” Experiencing this negatively impacted the participants’ ability and process of engaging in the therapeutic movement relationship: “It held me back from being present with her.” For some participants, the increased sense of responsibility added pressure to their role which participants regarded as distinct from their clinical experiences with other forms of grief: “When it’s grief that’s more accepted I feel more relieved that I know other people will support. It feels more shared.”

The therapeutic movement relationship is operationally defined as “a shared presence of body, mind, and spirit between the dance/movement therapist and client where healing occurs within the safe containment of a creative collaboration, and results in a resonance” (Young, 2017, p. 104). While working with disenfranchised grief, the active process of engaging in the shared presence was regarded as more demanding and elicited somatic sensations in response to attempting to remain grounded. The participants were very attuned with the gravity of the grief as they reported feeling like they were “holding a lot” while supporting their clients. Thus, some participants reported a need to be more deliberate in maintaining their own sense of stability and grounding while working with their clients or they risked taking on too much of the clients’ energy: “I really need to arrive…or it’s like I feel this [their experience] in myself.” Finding this was a necessary part of the process to create, hold, and protect space for disenfranchised grief in session. As a result, the clinical experience was regarded as much more taxing and described by participants as exhausting and effortful, “It’s so much more effort! I get more exhausted with it.”

Structurally, the therapeutic movement relationship acted as a surrogate for the absent social support and validation throughout the grieving process during therapy, allowing clients who were disconnected to be connected, those silenced to be heard, those unrecognized to be recognized, and those invisible to be seen. Thus, participants identified the therapeutic movement relationship as paramount in supporting their clients and addressing the textural themes of unrecognized, overwhelming, and disconnecting, as illustrated in the following participant statement: “The therapeutic relationship is what provides the opportunity for the grief to no longer be disenfranchised.” The participants’ emphasis on this structure parallels Neimeyer and Jordan’s (2002) suggestion for therapists to utilize their assessment on the intersectionality of grief to inform how the therapeutic relationship can be harnessed as a corrective experience for those disenfranchised. The participants’ experiences of strong kinesthetic empathy and somatic countertransference provided a wealth of insight into the clients’ embodied experience of disenfranchised grief, which offers a unique contribution to the understanding of how disenfranchised grief is experienced. In a way, the clients’ experiences were transmitted and experienced through the participants: “my way of putting it—it’s like this misplaced energy, and I think that’s what then shows up in my body is the energy of it.” For this study, kinesthetic empathy is defined as embodied empathy involving the process of dance/movement therapists attending to and with the body, and somatic countertransference is defined as the body-felt somatic responses or reactions to clients that can be used in the therapeutic process (Downey, 2016). Participants suggested that this experience produces an increased risk for secondary or vicarious trauma. A similar connection has been drawn between health professionals’ experiences of disenfranchised grief and the increased risk for compassion fatigue and burnout (Romesberg, 2004).

Both the participants and their clients received judgment and shaming within the structure of social and cultural factors, as opposed to the validation, attention, and support generally expected after experiencing a loss, or as a clinician, support in the process of working with their clients. This is consistent with what has been regarded as an empathic failure (Neimeyer & Jordan, 2002). For two participants, their place of work illustrated how systems operated as a source of disenfranchisement. Certain clients received more attention according to whether their losses were ranked as worthier of care amongst staff, as illustrated by one participant’s statement: “The ‘who deserves my attention, my care, and my honoring’ also happens all the time.” Attig (2004) pointed out the political implications involved in the misuse of authority and power to influence how one’s grief is treated and shaped according to another’s assumptions of what this should consist of and how it should look. This appears to demonstrate what occurred on a systematic level in the participants’ experiences. Similarly, Lamers’ (2002) warned of institutions as potential sources of disenfranchised grief, and emphasized the importance of considering the role in which systems contribute to disenfranchisement. This finding sheds light on the potential risk for systems oppressing the individuals they seek to serve. An important connection can be drawn between oppression and disconnection from the self and body in the clients’ presentations. Reynolds (2002) distinctly articulated this association by drawing on theory from the psychology of oppression to underline the result of interpersonal and intrapersonal disconnect elicited in the alienation process inherent within disenfranchised grief.

Stein (2012) drew attention to our culture’s “attitude towards time” that demands grieving individuals return to their former functioning and fulfillment of previously held social roles prior to the loss (p. 177). Grief is seen as appropriate only as long as grief does not interrupt this expectation. This was evident through the motivation behind some of the clients’ referrals due to their behavior or forms of emotion expression, or lack thereof, deemed as problematic by those in authority. One participant went as far as to “wonder if disenfranchised grief increases as we become less tolerable of our own vulnerability.” The presence of referrals for secondary symptoms may be indicative of the referring individuals’ lack of consideration for the relationship between the clients’ behavior, physical symptoms, and their grief (Doka, 2002; Worden, 2009). This supports the understanding within the literature on the presentation of masked grief as well as the increased likelihood of physical symptoms being overlooked or regarded as unrelated (Worden, 2009). The structure of a stronger presence and openness strengthened the therapeutic movement relationship and effectively invited the clients into vulnerability and authentic experiences of grief, addressing the textural themes of unrecognized and exacerbated grief.

The focus of treatment was centered on grief from the original loss in addition to the supplemental grief stemming from disenfranchisement (Kauffman, 2002). The explorative yet structured approach used in DMT provided a safe, inviting, and encouraging environment necessary to address the multiple experiences of grief that some clients were not afforded elsewhere. Understanding and processing the connection between symptoms and their grief allowed for increased adaptation in their post-loss life to occur, and in some cases, provided the clients with a sense of closure, “he said that that was really very meaningful for him to create this sense of closure, and he felt like he was able to move on from that time.” This is congruent with Simpkins and Myers-Coffman’s (2017) suggestion that addressing body sensations with DMT may support deeper understanding, acknowledgment of their grief narrative, and supporting the client’s resilience in adapting to post-loss life. Facilitating the process of reconnecting the clients with their grief and emotional self through a physically engaging approach was found to increase body and self-awareness, connection with the self, and encourage expression of their grief. This parallels the active framework presented by Worden (2009). Worden’s (2009) four tasks of mourning outline a fluid process in which the griever is regarded as an empowered agent with the freedom to engage in the individuality of their process of adapting to the loss (Worden, 2009). Understanding and processing the connection between symptoms and their grief allowed for increased adaptation in their post-loss life to occur, and in some cases, provided the clients with a sense of closure or resolution (Simpkins & Myers-Coffman, 2017). Utilizing structured interventions provided supportive containment and permission for their clients to explore their grief. Structure was complemented by the improvisational nature of dance/movement therapy that allowed for processing to unfold in a manner that was congruent to the clients’ grieving process. This promoted expanded movement repertoire and increased agency and ownership in the body to shift the holding patterns and tension created within the body, as illustrated in the following description: “I don’t have to stay there and get stuck there.”

The relationship between the structure of social and cultural factors and the overarching textural themes lay the groundwork for how disenfranchised grief was experienced as distinct from other forms of grief. The clients’ masked grief, specifically the lack of awareness and insight into the connection between their grief and their symptoms, combined with the texture of strong behavioral and emotional reactions impacted their ability to fully engage in the therapeutic process and their ability to effectively release their emotions. The external focus, prompted by the social and cultural factors at play, even further diverted the clients’ attention and energy away from their grief. This distinctiveness was also reported as evident through the decrease in professional support available to the participants. This texture emphasized the pervasiveness of the clients’ disenfranchised grief as it blended into the participants’ experience and was described as “This disenfranchised grief that this person isn’t able to talk about and then you’re not able to talk about it [with colleagues].”

In conclusion, the participants’ appraisal of their clients’ disenfranchised grief reveals a complex phenomenon with its intricacies experienced as overwhelming, unrecognized, disconnecting, and pervasive. Social and cultural factors lie at the root of the phenomenon and are embedded throughout all facets of the experience. The clinical process of working with clients experiencing disenfranchised grief was distinctive with secondary symptoms prompting referral for therapy, the presentation of masked grief, and the therapeutic process and relationship feeling more challenging and complicated, yet invaluable in supporting clients. Disenfranchised grief was evident in the clients’ physical embodiment of their grief, strong behavioral and emotional reactions, and difficult emotions that were all rendered stuck within themselves. Participants experienced heightened kinesthetic empathy and somatic countertransference while working with clients. The complex nature of disenfranchised grief and the clients’ distinct experience of it determined the goals of treatment which sought to mitigate the intense need for an outlet that was otherwise absent while addressing the disenfranchisement and the resulting symptoms. Dance/movement therapy was utilized in a structured manner to provide support and guide the clients through their grieving process, with participants’ reports of a positive impact increasing clients’ interpersonal and intrapersonal connection.

Limitations and Future Implications

This study contained several key limitations. First was the lack of utilization of movement data that was video recorded during the interview process. Although this data informed the principal investigator’s understanding of the participants’ experience, this data may have served a more prominent role within this study than the current design allowed. Secondly, the use of a convenience sample always runs the risk of skewing the results and may have been the case in this study. Thirdly, the presence of researcher bias inevitably guided the interview via the questions generated by the principal investigator. The data analysis process was oriented in the principal investigator’s personal interpretation of the data, which may also have influenced the results, even when considering the validation strategies. The participants’ reports of positive benefits of utilizing DMT in their clinical work may stem from their bias as practitioners of dance/movement therapy. Lastly, the varied population expertise among participants and the contextual differences in their clients’ developmental stage and experiences of the phenomenon may have influenced the results in ways outside the awareness of the principal investigator. It is also important to consider the impact that some participants’ clients were identified as experiencing co-occurring trauma with disenfranchised grief which may have influenced the clinical presentation and experience of disenfranchised grief (Worden, 2009), as one participant acknowledged, “It’s really hard to distinguish where the grief is manifesting or if it’s just a trauma response because it’s so interconnected with his story of grief and trauma.”

This study was the first attempt to examine the phenomenon of disenfranchised grief from a DMT standpoint. Future research can enrich the understanding of disenfranchised grief by addressing several questions: How is the way dance/movement therapists encounter disenfranchised grief different from how other clinicians encounter it? How might the experience of disenfranchised grief be different for children compared with adults? How do kinesthetic empathy and somatic countertransference inform interventions for disenfranchised grief? How can DMT uniquely address the effects of disenfranchised grief? The structural themes of DMT approach and interventions and biopsychosocial and movement goals and focus both initiated discussion on how DMT was utilized as a treatment modality, and a closer examination of assessment and choice of interventions would explicate the treatment process more thoroughly.

Research involving a pretest and posttest of the clients’ subjective experience of disenfranchised grief may provide deeper insight into their perspective on receiving therapeutic support. Additionally, research involving a pre and post movement assessment would allow for cross reference to determine the degree to which the clients’ grief is reflected in their movement patterns, and if the movement shifts that occur are reflective of the shifts in their grieving process. Examining the use of movement observation systems, such as the Kestenberg Movement Profile, Laban Movement Analysis, and Bartenieff Fundamentals, is a suggested area of research on this topic that may demonstrate the effectiveness of using a body-based treatment approach, such as DMT (Roberts, 2016). Frameworks such as these may serve a diagnostic purpose for describing and recognizing the somatic reactions and physical symptomatology associated with experiencing disenfranchised grief. Finally, investigation of the individual experience of disenfranchised grief has the potential to inform research on a macro level, specifically with how disenfranchised grief may live in communities.