“People don’t understand what goes on in here”: A consensual qualitative research analysis of inmate-caregiver perspectives on prison-based end-of-life care

Abstract

Background:

The age demographic of the incarcerated is quickly shifting from young to old. Correctional facilities are responsible for navigating inmate access to healthcare; currently, there is no standardization for access to end-of-life care. There is growing research support for prison-based end-of-life care programs that incorporate inmate peer caregivers as a way to meet the needs of the elderly and dying who are incarcerated.

Aim:

This project aims to (a) describe a prison-based end-of-life program utilizing inmate peer caregivers, (b) identify inmate-caregiver motivations for participation, and (c) analyze the role of building trust and meaningful relationships within the correctional end-of-life care setting.

Design:

A total of 22 semi-structured interviews were conducted with inmate-caregivers. Data were analyzed using Consensual Qualitative Research methodology.

Setting/participants:

All inmate-caregivers currently participating in the end-of-life peer care program at Briarcliff Correctional Facility were given the opportunity to participate. All participants were male, over the age of 18, and also incarcerated at Briarcliff Correctional Facility, a maximum security, state-level correctional facility.

Results:

In total, five over-arching and distinct domains emerged; this manuscript focuses on the following three: (a) program description, (b) motivation, and (c) connections with others.

Conclusion:

Findings suggest that inmate-caregivers believe they provide a unique and necessary adaptation to prison-based end-of-life care resulting in multilevel benefits. These additional perceived benefits go beyond a marginalized group gaining access to patient-centered end-of-life care and include potential inmate-caregiver rehabilitation, correctional medical staff feeling supported, and correctional facilities meeting end-of-life care mandates. Additional research is imperative to work toward greater standardization of and access to end-of-life care for the incarcerated.

Keywords

Prisons hospice care qualitative research healthcare quality access and evaluation

Get full access to this article

View all access options for this article.

References

Saunders

On dying well. Camb Rev 1984; 105(2279): 49–52.

Beckett

Peternelj-Taylor

Johnson

RL.

Growing old in the correctional system. J Psychosoc Nurs Ment Health Serv 2003; 41(9): 12–18.

Dawes

Ageing prisoners: issues for social work. Aust Soc Work 2009; 62(2): 258–271.

Phillips

Allen

Salekin

et al . Care alternatives in prison systems. Crim Justice Behav 2009; 36(6): 620–634.

Stone

Papadopoulos

Kelly

Establishing hospice care for prison populations: an integrative review assessing the UK and USA perspective. Palliat Med 2012; 26(8): 969–978.

Cloyes

Rosenkranz

Berry

et al . Essential elements of an effective prison hospice program. Am J Hosp Palliat Care 2015; 33(4): 390–402.

Yampolskaya

Winston

Hospice care in prison: general principles and outcomes. Am J Hosp Palliat Care 2003; 20(4): 290–296.

Linder

Meyers

. Palliative care for prison inmates: “don’t let me die in prison.” JAMA 2007; 298(8): 894–901.

Turner

Payne

Barbarachild

Care or custody? An evaluation of palliative care in prisons in North West England. Palliat Med 2011; 25(4): 370–377.

10.

Burles

Peternelj-Taylor

Holtslander

A “good death” for all? Examining issues for palliative care in correctional settings. Mortality 2015; 21(2): 93–111.

11.

Rikard

Rosenberg

Aging inmates: a convergence of trends in the American criminal justice system. J Correct Health Car 2007; 13(3): 150–162.

12.

Aging Inmate Committee. Aging inmates: correctional issues and initiatives. Corrections Today, November 2012, pp.84–87.

13.

Craig

RE.

Prison hospice: an unlikely success. Am J Hosp Palliat Care 1999; 16(6): 725–729.

14.

Noonan

Rohloff

Ginder

Mortality in local jails and state prisons. Bur Jusitce Stat 2015; 2015: 1–41.

15.

Coyne

Green

Standards of care: advancing inmate health care through performance-based outcomes. Correct Today 2008; 70: 50–52.

16.

Evans

Herzog

Tillman

The Louisiana state penitentiary: Angola prison hospice. J Palliat Med 2002; 5(4): 553–558.

17.

Williams

Stern

Mellow

et al . Aging in correctional custody: setting a policy agenda for older prisoner health care. Am J Public Health 2012; 102(8): 1475–1481.

18.

Williams

Goodwin

Baillargeon

et al . Addressing the aging crisis in U.S: criminal justice health care. J Am Geriatr Soc 2012; 60(6): 1150–1156.

19.

Handtke

Bretschneider

Wangmo

et al . Facing the challenges of an increasingly ageing prison population in Switzerland: in search of ethically acceptable solutions. Bioeth Forum 2012; 5(4): 134–141.

20.

Handtke

Wangmo

Ageing prisoners’ views on death and dying: contemplating end-of-life in prison. J Bioeth Inq 2014; 11(3): 373–386.

21.

Maschi

Marmo

Han

Palliative and end-of-life care in prisons: a content analysis of the literature. Int J Prison Health 2014; 10(3): 172–197.

22.

Papadopoulos

Lay

Current and emerging practice of end-of-life care in British prisons: findings from an online survey of prison nurses. BMJ Support Palliat Care 2015; 6: 101–104.

23.

Stienstra

Chochinov

HM.

Palliative care for vulnerable populations. Palliat Support Care 2012; 10(1): 37–42.

24.

Supiano

Cloyes

Berry

PH.

The grief experience of prison inmate hospice volunteer caregivers. J Soc Work End Life Palliat Care 2014; 10(1): 80–94.

25.

Loeb

Hollenbeak

Penrod

et al . Care and companionship in an isolating environment. J Forensic Nurs 2013; 9(1): 35–44.

26.

Cloyes

Rosenkranz

Wold

et al . To be truly alive motivation among prison inmate hospice volunteers and the transformative process of end-of-life peer care service. Am J Hosp Palliat Care 2013; 31(7): 735–748.

27.

Depner

Grant

Byrwa

et al . A consensual qualitative research analysis of the experience of inmate hospice caregivers: posttraumatic growth while incarcerated. Death Stud 2017; 41(4): 199–210.

28.

Hoffman

Dickinson

GE.

Characteristics of prison hospice programs in the United States. Am J Hosp Palliat Care 2011; 28(4): 245–252.

29.

Cloyes

Rosenkranz

Supiano

et al . Caring to learn and learning to care. J Correct Health Care 2017; 23(1): 43–55.

30.

Wright

Bronstein

Creating decent prisons: a serendipitious finding about prison hospice. J Off Rehabil 2007; 44(4): 25–42.

31.

Wion

Loeb

SJ.

End-of-life care behind bars. Am J Nurs 2016; 116(3): 24–36.

32.

Enders

Paterniti

Meyers

FJ.

An approach to develop effective health care decision making for women in prison. J Palliat Med 2005; 8(2): 432–439.

33.

Friestad

Socio-economic status and health in a marginalized group: the role of subjective social status among prison inmates. Eur J Public Health 2010; 20(6): 653–658.

34.

Hill

CE.

Consensual qualitative research: a practical resource for investigating social science phenomena. Washington, DC: American Psychological Association, 2012.

35.

Hill

Knox

Thompson

et al . Consensual qualitative research: an update. J Couns Psychol 2005; 52(2): 196–205.

36.

O’Brien

Harris

Beckman

et al . Standards for reporting qualitative research. Acad Med 2014; 89(9): 1245–1251.

37.

Cloyes

Berry

Martz

et al . Characteristics of prison hospice patients: medical history, hospice care, and end-of-life symptom prevalence. J Correct Heal Care 2015; 21(3): 298–308.

38.

National Hospice and Palliative Care Organization. Hospice Care, https://www.nhpco.org/about/hospice-care (2017, accessed 1 January 2017).

39.

Bernard

Braunschweig

Fegg

et al . Meaning in life and perceived quality of life in Switzerland: results of a representative survey in the German, French and Italian regions. Health Qual Life Outcomes 2015; 13(1): 160.

40.

Steger

Fitch-Martin

Donnelly

et al . Meaning in life and health: proactive health orientation links meaning in life to health variables among American undergraduates. J Happiness Stud 2015; 16(3): 583–597.

41.

King

Heintzelman

Ward

SJ.

Beyond the search for meaning: a contemporary science of the experience of meaning in life. Curr Dir Psychol Sci 2016; 25(4): 211–216.

42.

Miao

Zheng

Gan

Meaning in life promotes proactive coping via positive affect: a daily diary study. J Happiness Stud 2016; 18: 1683–1696.

43.

Vanhooren

Leijssen

Dezutter

Profiles of meaning and search for meaning among prisoners. J Posit Psychol 2016; 11: 622–633.

44.

Richter

Hostettler

End of life in prison. J Correct Health Care 2017; 23(1): 11–19.

45.

Stern

Greifinger

Mellow

Patient safety: moving the bar in prison health care standards. Am J Public Health 2010; 100(11): 2103–2110.

46.

Lambert

Hogan

Griffin

et al . The correctional staff burnout literature. Crim Justice Stud 2015; 28(4): 397–443.

47.

Niveau

Relevance and limits of the principle of “equivalence of care” in prison medicine. J Med Ethics 2007; 33(10): 610–613.

48.

Exworthy

Samele

Urquía

et al . Asserting prisoners’ right to health: progressing beyond equivalence. Psychiatr Serv 2012; 63(3): 270–275.

49.

Metzner

. Commentary: treatment for prisoners. A U.S. perspective. Psychiatr Serv 2012; 63(3): 276–276.

50.

Jotterand

Wangmo

The principle of equivalence reconsidered: assessing the relevance of the principle of equivalence in prison medicine. Am J Bioeth 2014; 14(7): 4–12.

51.

U.S. Supreme Court. Estelle v. Gamble: 429 US 97, 1975.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB