The Grief Experience of Prison Inmate Hospice Volunteer Caregivers

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<ul><li><p>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</p><p>Journal of Social Work in End-Of-Life &amp;Palliative CarePublication details, including instructions for authors andsubscription information:</p><p>The Grief Experience of Prison InmateHospice Volunteer CaregiversKatherine P. Supiano a , Kristin G. Cloyes a &amp; Patricia H. Berry aa College of Nursing , University of Utah , Salt Lake City , Utah , USAPublished online: 14 Mar 2014.</p><p>To cite this article: Katherine P. Supiano , Kristin G. Cloyes &amp; Patricia H. Berry (2014) The GriefExperience of Prison Inmate Hospice Volunteer Caregivers, Journal of Social Work in End-Of-Life &amp;Palliative Care, 10:1, 80-94, DOI: 10.1080/15524256.2013.877866</p><p>To link to this article:</p><p>PLEASE SCROLL DOWN FOR ARTICLE</p><p>Taylor &amp; Francis makes every effort to ensure the accuracy of all the information (theContent) contained in the publications on our platform. However, Taylor &amp; Francis,our agents, and our licensors make no representations or warranties whatsoever as tothe accuracy, completeness, or suitability for any purpose of the Content. Any opinionsand views expressed in this publication are the opinions and views of the authors,and are not the views of or endorsed by Taylor &amp; Francis. The accuracy of the Contentshould not be relied upon and should be independently verified with primary sourcesof information. Taylor and Francis shall not be liable for any losses, actions, claims,proceedings, demands, costs, expenses, damages, and other liabilities whatsoever orhowsoever caused arising directly or indirectly in connection with, in relation to or arisingout of the use of the Content.</p><p>This article may be used for research, teaching, and private study purposes. Anysubstantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &amp;Conditions of access and use can be found at</p><p></p></li><li><p>80</p><p>Journal of Social Work in End-of-Life &amp; Palliative Care, 10:8094, 2014Copyright Taylor &amp; Francis Group,LLCISSN: 1552-4256 print/1552-4264 onlineDOI:10.1080/15524256.2013.877866</p><p>Received 14 May 2013; accepted 22 September 2013.This article was presented at the First General Assembly of the Social Work Hospice and </p><p>Palliative Care Network on March 1112, 2013, in New Orleans, LA.Address correspondence to Katherine P. Supiano, PhD, LCSW, FT, 10 South 2000 East, </p><p>3640, Salt Lake City, UT 84112, USA. E-mail: </p><p>The Grief Experience of Prison Inmate Hospice Volunteer Caregivers</p><p>KATHERINE P. SUPIANO, KRISTIN G. CLOYES, and PATRICIA H. BERRY</p><p>College of Nursing, University of Utah, Salt Lake City, Utah, USA</p><p>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.</p><p>KEYWORDS end of life, grief, hospice, peer-care, prison</p><p>INTRODUCTION</p><p>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).</p><p>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 </p><p>Dow</p><p>nloa</p><p>ded </p><p>by [</p><p>Uni</p><p>vers</p><p>ity o</p><p>f N</p><p>ewca</p><p>stle</p><p> (A</p><p>ustr</p><p>alia</p><p>)] a</p><p>t 04:</p><p>11 0</p><p>4 O</p><p>ctob</p><p>er 2</p><p>014 </p></li><li><p> Grief of Prison Hospice Volunteers 81</p><p>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 19952010), 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, DAngelo, &amp; 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 &amp; 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.</p><p>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 carehospice 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.</p><p>BACKGROUND OF PRISON HOSPICE STUDY SITE</p><p>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.</p><p>The LSP Hospice unit is physically self-contained within the prisons treatment center and serves terminally ill prisoners with a prognosis of </p><p>Dow</p><p>nloa</p><p>ded </p><p>by [</p><p>Uni</p><p>vers</p><p>ity o</p><p>f N</p><p>ewca</p><p>stle</p><p> (A</p><p>ustr</p><p>alia</p><p>)] a</p><p>t 04:</p><p>11 0</p><p>4 O</p><p>ctob</p><p>er 2</p><p>014 </p></li><li><p>82 K. P. Supiano et al. </p><p>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 masters 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.</p><p>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.</p><p>The trained inmate volunteers provide the majority of hospice patient care and psychosocial support on a 1:1 basisincluding 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.</p><p>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.</p><p>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.</p><p>With respect to relatively comparable hospice caregivers, certified nurse assistants (CNAs) and community hospice volunteers, little is known about </p><p>Dow</p><p>nloa</p><p>ded </p><p>by [</p><p>Uni</p><p>vers</p><p>ity o</p><p>f N</p><p>ewca</p><p>stle</p><p> (A</p><p>ustr</p><p>alia</p><p>)] a</p><p>t 04:</p><p>11 0</p><p>4 O</p><p>ctob</p><p>er 2</p><p>014 </p></li><li><p> Grief of Prison Hospice Volunteers 83</p><p>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, &amp; Ejaz, 2010), roughly the same percentage of content included in the Certified of Hospice and Palliative Nursing Assistant examination ( Grief, as an element of self-care for CNAs, is not sufficiently addressed (Ersek &amp; Wilson, 2003) or understood (Waskiewich, Funk, &amp; Stajduhar, 2012). Hospice volunteers may also struggle with bound-aries (Claxton-Oldfield, Gibbon, &amp; Schmidt-Chamberlain, 2011), self-care, and personal grief, navigating an uneasy role between health care profes-sional and friend (Berry &amp; 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 deathincluding death experiences that happened earlier in life, deaths within the prison, and deaths in prison hospicein order to gain insight into volunteer grief processes.</p><p>The conceptual framework that informed the research questions and the interview schedule for this study is meaning reconstruction theory (Neimeyer, 2002; Neimeyer, Baldwin, &amp; 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, &amp; van Dyke Stringer, 2010).</p><p>The following research questions were addressed in this study:</p><p>1. How do inmates recall death experiences that occurred prior to their entry into the hospice volunteer role?</p><p>2. How do volunteers describe the meaning of these deaths and any impact upon their volunteer work?</p><p>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 </p><p>grief addressed?</p><p>Dow</p><p>nloa</p><p>ded </p><p>by [</p><p>Uni</p><p>vers</p><p>ity o</p><p>f N</p><p>ewca</p><p>stle</p><p> (A</p><p>ustr</p><p>alia</p><p>)] a</p><p>t 04:</p><p>11 0</p><p>4 O</p><p>ctob</p><p>er 2</p><p>014 </p></li><li><p>84 K. P. Supiano et al. </p><p>METHOD</p><p>Study Design</p><p>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.</p><p>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 d...</p></li></ul>