the grief experience of prison inmate hospice volunteer caregivers
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This article was downloaded by: [University of Newcastle (Australia)]On: 04 October 2014, At: 04:11Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
Journal of Social Work in End-Of-Life &Palliative CarePublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/wswe20
The Grief Experience of Prison InmateHospice Volunteer CaregiversKatherine P. Supiano a , Kristin G. Cloyes a & Patricia H. Berry aa College of Nursing , University of Utah , Salt Lake City , Utah , USAPublished online: 14 Mar 2014.
To cite this article: Katherine P. Supiano , Kristin G. Cloyes & Patricia H. Berry (2014) The GriefExperience of Prison Inmate Hospice Volunteer Caregivers, Journal of Social Work in End-Of-Life &Palliative Care, 10:1, 80-94, DOI: 10.1080/15524256.2013.877866
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Journal of Social Work in End-of-Life & Palliative Care, 10:80–94, 2014Copyright © Taylor & Francis Group, LLCISSN: 1552-4256 print/1552-4264 onlineDOI: 10.1080/15524256.2013.877866
Received 14 May 2013; accepted 22 September 2013.This article was presented at the First General Assembly of the Social Work Hospice and
Palliative Care Network on March 11–12, 2013, in New Orleans, LA.Address correspondence to Katherine P. Supiano, PhD, LCSW, FT, 10 South 2000 East,
3640, Salt Lake City, UT 84112, USA. E-mail: [email protected]
The Grief Experience of Prison Inmate Hospice Volunteer Caregivers
KATHERINE P. SUPIANO, KRISTIN G. CLOYES, and PATRICIA H. BERRY
College of Nursing, University of Utah, Salt Lake City, Utah, USA
Correctional institutions are obligated to provide end-of-life care to a population with complex medical needs. Prison hospices are increasingly being formed to address this demand. Few empirical studies have examined the impact of caring for dying inmates on the hospice inmate volunteers, who, in several prison health care systems, provide direct care. In this study, experiences of the inmate hospice volunteers with death were investigated to illuminate their grief processes. Understanding the bereavement needs of hospice volunteers and how prison hospice volunteers navigate grief and remain committed to providing excellent hospice care can inform the grief processes and practices of hospice care professionals.
KEYWORDS end of life, grief, hospice, peer-care, prison
INTRODUCTION
“With proper training and support, we shall find that our repeated griefs, far from undermining our humanity and our care, enable us to cope more confidently and more sensitively with each succeeding loss” (Parkes, 1986, p. 7).
The U.S. prison population poses formidable challenges for correctional and public health entities, as elderly inmates are now the fastest growing demographic group in the U.S. prison system. Between 2007 and 2010, the
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number of sentenced state and federal prisoners age 65 or older increased by 63%. There are now 124,400 prisoners age 55 or older (an increase of 282% between 1995–2010), and 26,200 prisoners age 65 or older (Human Rights Watch, 2012). This trend, largely due to determinate sentencing practices that began in the 1980s (Glaser, Warchol, D’Angelo, & Guterman, 1990), combined with the high prevalence of chronic illness and substance abuse history among minorities and those of lower socioeconomic status, has resulted in an incarcerated population at high risk for disability, disease burden, and psychosocial stressors associated with an unhealthy lifestyle. According to the Bureau of Justice Statistics (Maruschak & Beck, 2001), the incidence and prevalence of chronic illness in the prison population is rising rapidly. Nationally, 42.8% of state prison inmates reported a serious chronic medical condition. Compared to other Americans of the same age, state prison inmates are 3% more likely to have asthma, 55% more likely to have diabetes, and 90% more likely to have suffered a heart attack (Wilper et al., 2009). The greatest percentage, 30.4%, of state inmates reporting medical problems were those who had been incarcerated for 72 months or more.
Correctional institutions are required to provide a variety of health services, including end-of-life (EOL) care, to an increasingly older pop-ulation with complex medical and mental health illnesses. In response, many U.S. state prisons have implemented hospice and palliative care pro-grams to care for prisoners at the EOL. Since this is a recent phenomenon, scientific research is needed in the field of prison hospice to explore effec-tive systems of caring for dying prisoners within the constraints of a total institution whose residents live fully regulated lives. Few empirical studies have examined the impact of caring for dying inmates on those who pro-vide the direct care—hospice inmate volunteers. Understanding the grief experience of hospice inmate volunteers may enhance the quality and sustainability of prison hospice programs and inform social workers in corrections settings, who may be called upon to provide grief support to inmate volunteers.
BACKGROUND OF PRISON HOSPICE STUDY SITE
This study was conducted in the prison hospice program at the Louisiana State Penitentiary at Angola (LSP). The LSP Hospice Program has been in operation since 1998 and serves the inmate population of approximately 5,100 men. The majority of these men are serving life sentences without chance of parole. As in a number of other state prison systems, more inmates will die during incarceration at LSP than will be paroled.
The LSP Hospice unit is physically self-contained within the prison’s treatment center and serves terminally ill prisoners with a prognosis of
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6 months or less until death. Licensed by the state of Louisiana, the hos-pice is subject to the same regulations and on site surveys as other hos-pice programs in the state. Dedicated hospice staff includes a registered nurse hospice coordinator, registered and licensed practical staff nurses, a master’s prepared social worker, chaplains, inmate volunteers, including as volunteer inmate chaplains, a designated hospice medical director, staff physicians, and other available specialties such as PT, OT, and dietary.
Potential hospice volunteers are screened by corrections authorities, and those with rules infractions and those convicted of sexual offenses are excluded. Potential volunteers are interviewed by professional hospice staff and experienced volunteers. Once accepted into the program, new hospice volunteers receive 2 weeks of certified nursing assistant training conducted by a registered hospice nurse, and an additional 2 weeks of training on the hospice unit supervised by experienced volunteer mentors and staff. Training content includes universal precautions; safety; basic nursing skills such as bathing, transferring and toileting, basic anatomy and physiology, and postmortem care. Some discussion of grief and maintaining boundar-ies is included in the formal training and is also addressed in the training mentored by experienced volunteers. Volunteers are included in the monthly hospice interdisciplinary team meetings.
The trained inmate volunteers provide the majority of hospice patient care and psychosocial support on a 1:1 basis—including symptom assess-ment and nonpharmacological management, assistance with activities of daily living such as personal hygiene, toileting, and feeding, skin care, and mobility. Volunteers also provide companionship and religious fellowship. When death is imminent, a patient is placed on “vigil” and attended by volunteers 24 hours a day, in rotating 4-hour shifts. Upon the death of a hos-pice patient, volunteers bathe the body, dress the decedent in civilian attire, and drape the body in a memorial quilt crafted by the volunteers for this purpose. Most hospice patients elect to be buried on prison grounds in the LSP cemetery. Hospice volunteers participate in funerals of hospice patients, processing on foot to the cemetery behind a horse-drawn hearse and engage in the funeral ceremony.
Volunteers are not paid and their hospice work is in addition to other assigned work and responsibilities. Their participation as hospice volunteers cannot be considered in any administrative decisions made about them by corrections administration or parole boards.
The hospice inmate volunteer role represents an unusual hybrid between the community hospice volunteers, nurse assistants, and family caregivers found outside the prison in the “free world.” Volunteers provide care around-the-clock to actively dying inmates, and may, over their course of service, attend several dozen inmate deaths.
With respect to relatively comparable hospice caregivers, certified nurse assistants (CNAs) and community hospice volunteers, little is known about
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the caregiver grief experience as they attend to the dying and mourn the dead. Attention to personal and professional boundaries represents less than 2% of CNA training (Sengupta, Harris-Kojetin, & Ejaz, 2010), roughly the same percentage of content included in the Certified of Hospice and Palliative Nursing Assistant examination (http://nbchpn.org/DisplayPage.aspx?Title=NAOverview). Grief, as an element of self-care for CNAs, is not sufficiently addressed (Ersek & Wilson, 2003) or understood (Waskiewich, Funk, & Stajduhar, 2012). Hospice volunteers may also struggle with bound-aries (Claxton-Oldfield, Gibbon, & Schmidt-Chamberlain, 2011), self-care, and personal grief, navigating an “uneasy role between health care profes-sional and friend” (Berry & Planalp, 2009, p. 458). Even less is understood about the grief and bereavement experience of hospice inmate volunteers who care for dying prisoners and may attend many times the number of deaths as hospice CNAs or volunteers. This is a significant knowledge gap, because as U.S. prisons are faced with exponentially increasing numbers of aging and chronically ill inmates, enlisting the help of inmate volunteers to provide peer-care hospice service may be the only way that institutions can keep up with the mounting need for EOL care. The purpose of this study was to investigate the hospice volunteer experience with death—including death experiences that happened earlier in life, deaths within the prison, and deaths in prison hospice—in order to gain insight into volunteer grief processes.
The conceptual framework that informed the research questions and the interview schedule for this study is meaning reconstruction theory (Neimeyer, 2002; Neimeyer, Baldwin, & Gillies, 2006). Briefly, the elements of meaning reconstruction following a death include the capability of griev-ers to make sense of the loss, to realize growth or benefit that the experi-ence of loss may have brought them, and to reorganize personal identity in the context of loss. With respect to the grief experienced by volunteers, meaning reconstruction theory suggests that the griever is challenged by the death of a patient to assimilate the loss experience into preloss beliefs and self-narratives, or accommodate to the loss by reorganizing or expand-ing their beliefs and self-narrative to validate a changed personal identity in the context of deeper relationships (Neimeyer, Burke, Mackay, & van Dyke Stringer, 2010).
The following research questions were addressed in this study:
1. How do inmates recall death experiences that occurred prior to their entry into the hospice volunteer role?
2. How do volunteers describe the meaning of these deaths and any impact upon their volunteer work?
3. How do volunteers describe the experience of caring for dying inmates?4. Are these deaths associated with grief in the volunteers, and how is this
grief addressed?
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METHOD
Study Design
This study was a qualitative descriptive inquiry (Sandelowski, 2000, 2010) investigating the hospice inmate volunteer experience with death using in-person interviews to illuminate volunteer grief processes. The findings reported here are one component of a larger research study analyzing fea-tures of an established prison hospice program that contribute to the effective and sustainable delivery of palliative and hospice care for men incarcerated in a maximum security prison. These findings represent one component of extensive qualitative interviews. The University of Utah Institutional Review Board, the Louisiana Department of Corrections, and the Louisiana State Penitentiary Administration approved all research activities.
In using qualitative descriptive inquiry, the researchers were able to remain data-near to the interview narratives in the naturalistic setting of prison hospice care. The data-near approach (Sandelowski, 2010) permitted us to accept volunteer accounts as given and fostered respect for the experi-ence of hospice volunteers as narrated. This allowed us to discern the expe-rience of participation in the care of actively dying inmates and the meaning of this care in the context of prior and subsequent grief. We reflected on narrative through the lens of meaning reconstruction theory.
Participants
Our interview participants represented a convenience sample of volunteers. At the time of the original study, there were 36 volunteers working in the LSP hospice, including experienced and new volunteers. All volunteers were invited to participate. No volunteers explicitly declined participation. All par-ticipating volunteers signed informed consent documents.
Study Location
All interviews were conducted within the LSP treatment center, either in the chapel or staff offices. While every effort was made to assure privacy in inter-views, the nature of the maximum security prison setting including cameras, interruptions for inmate count, and potential access by security officers could not guarantee full confidentiality. It is our observation that hospice volunteers were aware of these factors yet comfortable and forthcoming in their interviews.
Data Collection
Interviews with volunteers were conducted by the three female authors and one female graduate student. Interviews were 45–90 minutes in duration
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and were audio-recorded. Interviews were conducted according to a semi-structured interview guide developed by the authors for the larger research study and included open-ended questions that allowed opportunity for dis-cussion and reflection (see Table 1).
Data Analyses
Recordings were professionally transcribed and imported into NVivo 9 (QSR International Inc., Burlington, MA, USA) for review and analysis. The research team read the transcribed interviews multiple times and checked them against audio recordings for accuracy. For the original study, we used grounded theory methods for inductive and constant comparative analysis (Charmaz, 2006). The three research team members (authors) performed an initial phase of line-by-line in vivo coding. Next, all three team members performed line-by-line process coding. Using both coding approaches, the data were coded at the level of phrases, so each line of text often had more than one code assigned, and multiple codes could be assigned to the same statements. A list of structural codes was generated and (Saldana, 2013) used in a primary phase of coding to categorize and organize segments of data by content and concept. Next, all data coded as “grief, bereave-ment, death, dying, or loss” were extracted from the transcripts. These audio and transcript segments were subsequently reviewed, re-coded, and analytic notations were made (first author), to identify themes and meanings related to the volunteers’ experiences of prior losses and grief in the setting of prison hospice caregiving. Selection of supporting quotations was based on representing instances of patterns of meaning in identified content themes (Charmaz, 2006; DeCuir-Gunby, Marshall, & McCulloch, 2011).
Descriptive inquiry permits and encourages theoretical knowledge, clin-ical pattern observation, and scientific understanding of content under study, creating an analytic framework for interpretation (Thorne, Reimer Kirkham, &
TABLE 1 Interview Guide
1. How long have you worked as a volunteer? 2. How did you learn to do this work? 3. What is the most important thing you learned in your training? 4. Are there things you feel need to be covered in training that aren’t? 5. What is the most important thing you do as a volunteer? 6. How do you know when a patient is in distress, or having bad symptoms? What do you do? 7. How does your role fit with the nurses, social worker, and other care providers? 8. Tell me about what you think makes this hospice work. 9. Why are you a volunteer? What does this work mean to you?10. Has being a volunteer changed the way you think about aging, illness, or death?11. Has it changed you? How? Has the hospice changed the culture here?12. What do people need to know about doing hospice work inside a prison like this?13. What else do we need to know about the program and the work you do?
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O’Flynn-Magee, 2004) that was further informed and grounded by our varied clinical and disciplinary backgrounds (palliative and bereavement care social work, mental health corrections nursing, and hospice and palliative advanced practice nursing) to check and double check interpretation.
FINDINGS
Sample
Data were obtained from 32 interviews with 27 of 36 potential volunteers. The remaining nine volunteers were unavailable for interviews during our prison visits. The mean age of volunteers was 48 years (SD = 10.4, range 27–71 years). In comparison, the mean age of LSP prisoners as reported by prison authorities was 45 years. The mean age of patients in hospice (at time of death) as reported by prison authorities was 56 years.
Among hospice volunteers, the duration of incarceration ranged from 3–36 years, with a mean duration of 15 years (SD = 6.5). Four volunteers had been incarcerated 5 years or less, 5 between 6–10 years, 8 between 11–15 years, and 18 greater than 15 years (one volunteer unreported). Thirty vol-unteers were African American, 6 were White. Louisiana State Penitentiary is an all-male facility, and therefore all volunteers and all hospice patients were male.
Fifteen volunteers were experienced and had been involved in the LSP hospice program for 2 to 17 years, with mean 10 years of service. Experienced volunteers were interviewed in 2012 or 2013. Twelve of the volunteers inter-viewed were new to the program. We interviewed them in June of 2012, as they were entering their training, and interviewed five of them again approximately 9 months into their hospice service.
Central Patterns
Three central patterns emerged from analysis of the interview material related to grief, loss, bereavement, and death: experience with death, death of a patient-inmate in hospice, and dealing with grief. Content found within these patterns is described and explained in the context of the meaning of death and grief as characterized in the stories conveyed by volunteers.
EXPERIENCE WITH DEATH
Many inmate volunteers described recollections of family deaths that occurred in their formative years. Sometimes death was recalled as positive, taking place in the safety of family relationships. For most, however, death of family and friends was experienced as traumatic or occurred during the inmate’s absence secondary to incarceration.
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Experience With Death—Positive. One inmate recalled:
I remember a time when someone in our family, a relative, they fell ill and were probably about to die. The family coalesced together to take care of them—[to] support the dying relative. And I remember that. I remember those times where my mother, my aunt, and my sisters, they all got together. And they had us doing things as kids to play a part and to help. (new volunteer—first interview)
Experience With Death—Absence. Several volunteers expressed pro-found grief and guilt at being absent when family members died while the inmates were imprisoned. This was conveyed by some as being unable to fulfill family duties, as expressed by this volunteer, “… my father passed away, who I was real close to, a year after I was locked up. So that separation—there was a great deal of amount of grief that went along with that” (experienced volunteer). For others, absence prevented them from “saying good-bye.” One inmate recalled being asked about this as he considered entering the hospice volunteer program. He was asked, “Hey, black man, why you wear that [necklace] around your neck?” “Because it’s a reminder of when my daughter was on her deathbed. I wasn’t there for her” (New volunteer—first interview).
Experience With Death—Traumatic. Most inmates recalled deaths that they perceived and described as traumatic. Several deaths were violent and related to criminal activity familiar in their lives prior to and subsequent to incarceration; acquaintances from home communities or acquaintances within the prison. For others, the trauma occurred within the family. This volunteer related two traumatic losses:
I had a brother who committed suicide and my mother passed away back to back. … It was a major step in my life, a turning point in my life, and like I said once again about the grief part it really helped me to learn how to deal with grief … and I [have since] sat with at least 50 patients until their death. (Experienced volunteer)
DEATH OF PATIENTS IN HOSPICE CARE
Experience With Death—How Patients Die. As is true for many hospice caregivers (Clark, 2011; Claxton-Oldfield et al., 2011), these lived experi-ences with death affect how the death of patients was perceived and con-structed by hospice volunteers. Many of the more experienced volunteers recalled that, prior to the initiation of the hospice program, inmates fre-quently died alone and, in the observation of experienced volunteers, in dis-tress. These volunteers indicated that it took years for the inmate community to understand and express trust in the hospice program. Even in the setting
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of a highly respected prison hospice program, ill and dying inmates bring personal struggles to the dying process, and the volunteers address this with acceptance. One volunteer explained:
Dying is a rough passage for some because of the experiences that have made it. The sins that they have made up to this point. Sometimes there’s regret. Their errorly ways is made very clear, and it’s too late to amend all the wrongs. (Experienced volunteer)
Another volunteer explained their approach to providing comfort:
I feel like they’re afraid that—of dying, that’s it. But once you assure them of the care that they going to get and everything, and once you can get them over here, then they’re going to get comfortable with the situation. They get over it. They get over it. (New volunteer—second interview)
Volunteers, both experienced and new, described patient deaths in highly personal terms. In most narratives, this was framed in the context of patients known and understood by volunteers, and of well-delivered care. These deaths were accepted as positive. One volunteer reported:
I’m happy and I’m sad. Because I know that the patient, from my belief system, that the patient is on to a better life, a better existence. And it’s sad, because the human part of me and the connection that we’ve made, to see that person go. (Experienced volunteer)
Yet, the deaths do extract a personal toll on the volunteers, as described by this volunteer:
When I spoke at his funeral, man, you know, it took a lot for me to hold it in—you know?—to keep from just bursting out in tears. Because I really had took a liking to him. He was a people guy. (Experienced volunteer)
The volunteers also conveyed a deep awareness of their own deaths and the likelihood of dying in prison. Several articulated a sense of reciproc-ity; desiring to do good work in a program that could assure them a personal good death in the future.
Volunteer View of Hospice Death. In different ways than might be expe-rienced in community hospice settings, perhaps because of frequent exposure to death, volunteers described awareness that death is real and inevitable. They described the experience of a prison death, prior to the inception of the LSP hospice, as being alone, abandoned, and in pain. There was a recognition that one will die, and that one will die in prison. They reported that death can be a positive experience for patients, but to achieve a positive death for patients requires much of the volunteer—physically, emotionally, and spiritually.
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THE GRIEF OF VOLUNTEERS
As was noted earlier, after a patient death, the hospice volunteers are imme-diately tasked with preparing and transporting the decedent’s body, cleaning the room, anticipating and attending the funeral, and caring for additional patients. Volunteers may attend many deaths each year. In describing their ability to continue to provide a high standard of care despite multiple losses, volunteers recounted the challenges and how they coped.
The grief experienced by hospice volunteers was occasionally over-whelming. One volunteer noted:
It’s a part of you gone. It hurt so bad, all you can do is cry. You don’t care who see you cry. One time, I mean I felt like if you cry too, it’s weak. You know, men don’t cry. But as I begin in this program, it make no differ-ence who see me cry. I feel for that person when they leave, but I know one day I did everything I could for him, and he know I was right there with them. He wasn’t by himself. (New volunteer—second interview)
Grief of Volunteers—Relationships. Volunteers described relationships with patients that varied from brief and superficial to those that evidenced deep personal connections. Narratives spoke to the nature and consequences of these relationships, of resilience in forming and relinquishing relation-ships with patients, and their relationships with hospice staff and each other:
It’s a fact that it is a part of life. The hard part comes in is when you do, like you said, building those relationships with guys, factoring on that relationship, only to watch them die. You know, it’s difficult, but I just kind of—I don’t know. I just give them my all to that patient, to that process, and when it’s over, it’s over. I’m really right back on to the other patients. (Experienced volunteer)
Grief of Volunteers—Coping and Resilience. Sources of resilience and methods of coping included personal faith, a sense of purpose, support from staff and from peer volunteers. Many volunteers place their work in the context of life-changing faith, and dealt with difficult caregiving in a spiritual context, as expressed by this volunteer:
And that’s something I know: It’s only through prayer that I’ll be able to make it. … But I know when the road gets too—when it gets too hard, I know the only thing I can do, the only thing that soothes me, is when I get off and I can just talk to God about my problem. (Experienced volunteer)
Others committed themselves to care of the next patient:
When a patient die on me, I say, “I can’t handle it no more.” But go back to the patient. I know that other people need me, just like he did.
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If I was there for him, I could be there for [someone else]. And that will motivate you. That will keep you going, that you know somebody else needs you. You can’t stop now. And I refuse to stop now. (Experienced volunteer)
Volunteers coped with loss by developing boundaries. Only two of the volunteers interviewed endorsed firm boundaries; one volunteer stated, “you can’t stop it (grief), but you have to try to compartmentalize your emotions” (new volunteer-first interview). Most volunteers reported relationships with hospice patients that challenged boundaries and subsequent grief. An oft mentioned experience was the willingness of volunteers to allow deep per-sonal connections, as this volunteer described:
You get a chance to get closer to people. But sometime you have a tendency to get a little too close to the person, and … when he passes on, you kind of will be missing that guy … cause you got so close to that person, actually as a part of your family, and when that person dies on, that takes you—it’s like it takes a piece of you away. (Experienced volunteer)
Volunteers relied on the hospice staff as well as each other to stay engaged in the hospice program. Often seeking support of their peers first who often suggested that they get additional support from the hospice direc-tor of nursing, nurse supervisor, or social worker. One volunteer echoed the experience of many:
If I’m going through something and I need someone to talk to, I can go to one of my hospice volunteers and we can sit down or walk the yards—or the yard, and we can sit down and talk about it. And therefore if they feel like I need to talk to—they don’t give me wrong advice. They may—if they feel like I need to talk to [the hospice staff]. You always have a shoulder to lean on—yeah—and they’ll always be right there for you. (New volunteer—second interview)
But the relationships between volunteers appeared most effective in processing grief and loss. This volunteer related the value he gained from his fellow volunteers:
I didn’t have a lot of deep relationships in life. So a lot of these guys that I’ve been in a relationship over these—with over these last 12 years, to me it’s like family. And who wouldn’t want the best for their fami-lies? And I’d say that it’s … affected me emotionally, to the point of some type of grief; you know, can I say that it’s heightened my senses and brought me to a new perspective on mortality? Yes definitely. It gives me a desire for greater fulfillment of this life as we know it. (Experienced volunteer)
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DISCUSSION
The decision to become a hospice volunteer was frequently influenced by prior experience with death of a friend or family member. These deaths were occasionally tolerable, either supported by hospice or involving effective family caregiving. More often, deaths were perceived as trau-matic or distressing. Those with positive death experiences in childhood were motivated to continue such care into their prison life. Negative experiences such as being absent from family when needed, fostered a desire to do it as well, but to do differently, to make up for the nega-tive experiences. They influenced becoming a volunteer and how the volunteers understood and performed the hospice caregiving role. When viewed through the lens of meaning reconstruction, it appears that prior experience with death challenged and motivated caregiving in prison hospice.
Volunteers allowed themselves to be relationally connected to dying patients, and found value and meaning in these relationships—both in the short-term during the dying process and upon later reflection. Most narra-tives suggested that relationship formation was an intentional process on the part of the volunteers, that they understood and accepted the risks and benefits of close relationships. While we cannot speculate if this is character-istic of inmates seeking to volunteer in the hospice program, the narratives suggested that deep relationships between volunteer and hospice patient are a normative and valued among the volunteers. While some hospice vol-unteers, notably new volunteers, described firm personal boundaries, most endorsed use of fluid, open boundaries. Boundaries appeared to be relation-ally constructed in response to the wishes of the dying inmate, and were characterized by personal identification.
Grief was viewed as an acceptable and necessary part of caregiv-ing that validated the significance of the role. Grief was processed with internal reflection, spiritual contemplation, and informal peer support. Volunteers appeared comfortable accepting support from staff and espe-cially from each other. The mentoring relationship between experienced and new volunteers may account for some of the grief resilience observed in volunteers.
Study Limitations
Further comparison to other themes from the broader study is needed to elaborate fully on the role of the prison hospice volunteer, the impact of peer training and support on the grief experience of volunteers, and the larger issues of prison hospice quality and sustainability. The Louisiana State Penitentiary was selected as the setting of this study because of its successful prison hospice program. It is not clear how transferable these findings are to
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other prison hospices. This study represents an initial attempt to understand the meaning of grief as described in narratives of volunteers in an established and thriving prison hospice. In addition, as our study was conducted in an all-male, predominately African American facility, it is unclear if caregiving and grief might be experienced differently by female hospice volunteers or those of other races and ethnicities. Finally, we must again note that while considerable effort was made to secure privacy and confidentiality, condi-tions within the setting of a maximum security prison do not allow complete assurance of this.
Practice Implications
Inmate volunteers at the Louisiana State Penitentiary Hospice Program managed unrelenting loss with strategies beyond the parameters typically prescribed in health care. Though strongly identifying themselves in a profes-sional role, volunteers appeared to accept deeper levels of relationship than typically endorsed in community hospice practice. The fluidity of boundar-ies was striking in the context of prison, where rigid systems of personal boundaries are socially reinforced. Social workers in hospice and palliative care deal with the tension between satisfying relationships with patients and their families and the maintenance of safe and professional boundaries, not only in their own practice, but in supporting the boundaries of colleagues from other disciplines. Peer support from other social work colleagues is not always readily available in community hospice practice and must be sought out and utilized. One possible implication of the volunteers’ method of accepting deep relationships with dying persons while continually pro-cessing grief and remaining open to new relationships with certain loss for professional hospice caregivers, is the use of personal spiritual care and acceptance of peer support that is a signature feature of the LSP Hospice at Angola.
While hospice volunteers relied on individual coping strategies and peer support as primary tools in personal grief management, the prison hospice interdisciplinary team offered essential training and ongoing sup-port. Social workers practicing in prison hospices are uniquely equipped to counsel healthy grief and self-care in inmate volunteers. In the setting of prison hospice with inmate volunteer caregivers, social workers could facili-tate formal peer support and contribute to an atmosphere that endorses this effective peer-to-peer model of grief care.
Recommendations for Further Study
An examination of compassion fatigue was beyond the scope of this study, but merits consideration as a component of a sustainable peer-to-peer prison hospice model. In addition, the structure and process of the mentoring that
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occurs between experienced and new volunteers could contribute to a greater understanding of effective care of dying inmates and the resilience of volunteers.
CONCLUSION
Volunteers were able to make sense of previous experiences with death to become responsive to the suffering of dying inmates in ways both effective and compassionate. This effort affirms the theoretical framework of mean-ing reconstruction theory in the lived grief of hospice volunteers. Volunteers demonstrated capability for sense-making of death and articulated growth and stamina in caregiving. Further work is underway to discern the meaning of grief and the exchange of support in the identity of hospice volunteers. Efforts to support effective bereavement skills among these committed and valuable volunteers will contribute to a sustainable model of prison peer-to-peer care and may inform hospice care in the free world.
FUNDING
The University of Utah Center on Aging funded this research as a pilot grant.
REFERENCES
Berry, P., & Planalp, S. (2009). Ethical issues for hospice volunteers. American Journal of Hospice and Palliative Medicine, 25, 458–462.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through quali-tative analysis. Thousand Oaks, CA: Sage.
Clark, E. (2011). Self-care as a best practice in palliative care. In T. Altilio & S. Otis-Green (Eds.), Oxford textbook of palliative social work (pp. 771–783). Oxford, United Kingdom: Oxford University Press.
Claxton-Oldfield, S., Gibbon, L., & Schmidt-Chamberlain, K. (2011). When to say “yes” and when to say “no”: Boundary issues for hospice palliative care volun-teers. American Journal of Hospice and Palliative Medicine, 28, 429–434.
DeCuir-Gunby, J. T., Marshall, P. L., & McCulloch, A. W. (2011). Developing and using a codebook for the analysis of interview data: An example from a professional development research project. Field Methods, 23, 136–155.
Ersek, M., & Wilson, S. A. (2003). The challenges and opportunities in providing end-of-life care in nursing homes. Journal of Palliative Medicine, 6(1), 45–57.
Glaser, J. B., Warchol, A., D’Angelo, D., & Guterman, H. (1990). Infectious diseases of geriatric inmates. Reviews of Infectious Diseases, 12(4), 683–692.
Human Rights Watch. (2012). Old behind bars: The aging prison population in the United States. Retrieved from http://www.hrw.org/sites/default/files/reports/usprisons0112webwcover_0.pdf
Dow
nloa
ded
by [
Uni
vers
ity o
f N
ewca
stle
(A
ustr
alia
)] a
t 04:
11 0
4 O
ctob
er 2
014
94 K. P. Supiano et al.
Maruschak, L. M., & Beck, A. J. (2001, January). Medical problems of inmates (Bureau of Justice Statistics Special Report No. NCJ 181644).Washington, DC: U.S. Department of Justice, Office of Justice Programs.
Neimeyer, R. A. (2002). Traumatic loss and the reconstruction of meaning. Journal of Palliative Medicine, 5, 935–942.
Neimeyer, R. A., Baldwin, S. A., & Gillies, J. (2006). Continuing bonds and recon-structing meaning: Mitigating complications in bereavement. Death Studies, 30, 715–738.
Neimeyer, R. A., Burke, L. A., Mackay, M. M., & van Dyke Stringer, J. G. (2010). Grief therapy and the reconstruction of meaning: From principles to practice. Journal of Contemporary Psychotherapy, 40(2), 73–83.
Parkes, C. M. (1986). Orienteering the caregiver’s grief. Journal of Palliative Care, 1, 5–7.
Saldana, J. (2013). The coding manual for qualitative research. Thousand Oaks, CA: Sage Publications.
Sande lowski, M. (2000). Whatever happened to qualitative description? Research in Nursing and Health, 23(4), 334–340.
Sandelowski, M. (2010). What’s in a name? Qualitative description revisited. Research in Nursing and Health, 33(1), 77–84. doi:10.1002/nur.20362
Sengupta, M., Harris-Kojetin, L. D., & Ejaz, F. K. (2010). A national overview of the training received by certified nursing assistants working in U.S. nursing homes. Gerontology and Geriatrics Education, 31(3), 201–219.
Thorne, S., Reimer Kirkham, S., & O’Flynn-Magee, K. (2004). The analytic chal-lenge in interpretive description. International Journal of Qualitative Methods, 3(1), 1–21.
Waskiewich, S., Funk, L. M., & Stajduhar, K. I. (2012). End of life in residential care from the perspective of care aides. Canadian Journal of Aging, 31(4), 411–421.
Wilper, A. P., Woolhandler, S., Boyd, J. W., Lasser, K. E., McCormick, D., Bor, D. H., & Himmelstein, D. U. (2009). The health and health care of U.S. prisoners: Results of a nationwide survey. American Journal of Public Health, 99(4), 666–672. doi:10.2105/AJPH.2008.144279
Dow
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ded
by [
Uni
vers
ity o
f N
ewca
stle
(A
ustr
alia
)] a
t 04:
11 0
4 O
ctob
er 2
014