Due to large number of deaths occurring in nursing home (NH) settings, along with reports of pain and suffering, there is great need for improvements in the provision of end-of-life (EOL) care in NHs.
Objective:
The aim of this study was to develop a comprehensive understanding of the experience of dying in NHs through the perspective of residents, family, and facility staff.
Design:
This study uses a qualitative interpretive meta-synthesis to provide a holistic view of EOL care in NHs across multiple qualitative studies.
Setting/Subjects:
Researchers synthesized the findings of 13 qualitative articles, including the diverse perspective of 91 dying residents, 419 NH staff, and 156 family members/caregivers across at least 44 NHs.
Methods:
A qualitative meta-synthesis employs the following steps: identification of studies, theme extraction, translation, and synthesis of findings.
Results:
Thematic analysis is organized using a conceptual model demonstrating the links between environmental and personal factors impacting EOL care in NHs.
Conclusions:
Findings provide support for the importance of a relational community and culture change within NHs for positive EOL experiences, in addition to providing a model to guide future research priorities.
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References
1.
WetleT, TenoJ, ShieldR, et al.: End of Life in Nursing Homes: Experiences and Policy Recommendations. Washington, DC: AARP Public Policy Institute, 2004.
2.
AragonK, CovinskyK, MiaoY, et al.: Use of the Medicare posthospitalization skilled nursing benefit in the last 6 months of life. Arch Intern Med, 2012; 172:1573–1579.
3.
BercovitzA, DeckerFH, JonesA, RemsburgRE: End-of-life care in nursing homes: 2004 National Nursing Home Survey. Natl Health Stat Report, 2008; 9:1–23.
4.
OliverDP, PorockD, ZweigS: End-of-life care in US nursing homes: A review of the evidence. J Am Med Dir Assoc, 2005; 6(3 Suppl):S21–S30.
5.
FosseA, SchaufelMA, RuthsS, MalterudK: End-of-life expectations and experiences among nursing home patients and their relatives—A synthesis of qualitative studies. Patient Educ Couns, 2014; 97:3–9.
6.
CarlsonAL: Death in the nursing home: Resident, family, and staff perspectives. J Gerontol Nurs, 2007; 33:32–41.
7.
EstabrooksCA, FieldPA, MorseJM: Aggregating qualitative findings: An approach to theory development. Qual Health Res, 1994; 4:503–511.
8.
Finfgeld-ConnettD: Generalizability and transferability of meta-synthesis research findings. J Adv Nurs, 2010; 66:246–254.
9.
JensenLA, AllenMN: Meta-synthesis of qualitative findings. Qual Health Res, 1996; 6:553–560.
10.
SandelowskiM, DochertyS, EmdenC: Qualitative meta-synthesis: Issues and techniques. Res Nurs Health, 1997; 20:365–371.
11.
AagaardH, HallEO: Mothers' experiences of having a preterm infant in the neonatal care unit: A meta-synthesis. J Pediatr Nurs, 2008; 23:e26–e36.
12.
SalterK, HellingsC, FoleyN, TeasellR: The experience of living with stroke: A qualitative meta-synthesis. J Rehabil Med, 2008; 40:595–602.
13.
UhrenfeldtL, AagaardH, HallEO, et al.: A qualitative meta‐synthesis of patients' experiences of intra‐and inter‐hospital transitions. J Adv Nurs, 2013; 69:1678–1690.
14.
AguirreRT, BoltonKW: Qualitative interpretive meta-synthesis in social work research: Uncharted territory. J Soc Work, 2014; 14:279–294.
15.
PattonMQ: Qualitative Research and Evaluation Methods, 3rd ed. Thousand Oaks, CA: Sage Publications, Inc., 2002.
16.
SanfordAM, OrrellM, TolsonD, et al.: An international definition for “nursing home.”. J Am Med Dir Assoc, 2015; 16:181–184.
17.
Bern-KlugM, GessertCE, CrennerCW, et al.: “Getting everyone on the same page”: Nursing home physicians' perspectives on end-of-life care. J Palliat Med, 2004; 7:533–544.
18.
Bern-KlugM, Forbes-ThompsonS: Family members' responsibilities to nursing home residents: “She is the only mother I got.”. J Gerontol Nurs, 2008; 34:43–52.
19.
Forbes-ThompsonS, GessertCE: End of life in nursing homes: Connections between structure, process, and outcomes. J Palliat Med, 2005; 8:545–555.
20.
HansonLC, HendersonM, MenonM: As individual as death itself: A focus group study of terminal care in nursing homes. J Palliat Med, 2002; 5:117–125.
21.
HodgsonNA, LehningAJ: Palliative care in nursing homes: A comparison of high-and low-level providers. Int J Palliat Nurs, 2008; 14:39–45.
22.
JacksonJ, DerderianL, WhiteP, et al.: Family perspectives on end-of-life care: A metasynthesis. J Hosp Palliat Nurs, 2012; 14:303–311.
23.
Kayser-JonesJ: The experience of dying: An ethnographic nursing home study. Gerontologist, 2002; 42:11–19.
24.
LopezRP: Suffering and dying nursing home residents: Nurses' perceptions of the role of family members. J Hosp Palliat Nurs, 2007; 9:141–149.
25.
OliverDP, PorockD, OliverDB: Managing the secrets of dying backstage: The voices of nursing home staff. Omega, 2006; 53:193–207.
26.
WaldropDP, KirkendallAM: Comfort measures: A qualitative study of nursing home-based end-of-life care. J Palliat Med, 2009; 12:719–724.
27.
WaldropDP, KusmaulN: The living-dying interval in nursing home-based end-of-life care: Family caregivers' experiences. J Gerontol Soc Work, 2011; 54:768–787.
28.
WilsonSA, DaleyBJ: Attachment/detachment: Forces influencing care of the dying in long-term care. J Palliat Med, 1998; 1:21–34.
29.
CorbinJM, StraussA: Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Chicago, IL: Sage Publications, Inc., 1990.
30.
MoosRH: Connections between school, work, and family settings. In: FraserBJ, WalbergHJ (eds): Educational Environement: Evaluation, Antecedents and Consequences. New York: Pergamon Press, 1991, pp. 29–53.
31.
GranbomM, HimmelsbachI, HaakM, et al.: Residential normalcy and environmental experiences of very old people: Changes in residential reasoning over time. J Aging Stud, 2014; 29:9–19.
32.
ThompsonSA, BottM, GajewskiB, TildenVP: Quality of care and quality of dying in nursing homes: Two measurement models. J Palliat Med, 2012; 15:690–695.
33.
MeierDE, LimB, CarlsonMD: Raising the standard: Palliative care in nursing homes. Health Aff (Millwood), 2010; 29; 136–140.
34.
SternsS, MillerSC, AllenS: The complexity of implementing culture change practices in nursing homes. J Am Med Dir Assoc, 2010; 11:511–518.
35.
WallaceCL, SwagertyD, BarbagalloM, et al.: IAGG/IAGG GARN international survey of end-of-life care in nursing homes. J Am Med Dir Assoc, 2017; 18:465–469.
