Direct Care Workers (DCW) provide both personal care to patients and emotional support to patients and caregivers in hospice and palliative care. DCWs often develop close ties and are then expected to work with new clients immediately following a care transition, with little or no time to grieve. A qualitative pilot study (n = 24) was conducted to explore the experience of DCWs during care transitions. Data was collected via focus groups and individual interviews. Thematic analysis was used. Results suggest DCWs managed their experiences (n = 19), by anticipating and accepting grief and loss (n = 21), employing personal coping strategies (n = 19), and saying good-bye (n = 15). Relational factors impacted the experience of care transitions (n = 22), including building and maintaining the relationship (n = 14), and the strength of perceived connections (n = 15). Increased organizational support and training to help address grief and loss will better support DCWs and the direct care workforce.
BlauG.ChapmanS. A.NeriM. (2016). Testing the relationship between personal/home care aide trainees’ career goals and their commitment to home care. Home Health Care Management & Practice, 28(3), 150–154.
2.
BoernerK.BurackO. R.JoppD. S.MockS. E. (2015). Grief after patient death: Direct care staff in nursing homes and homecare. Journal of Pain and Symptom Management, 49(2), 214–222. https://doi.org/10.1016/j.jpainsymman.2014.05.023
3.
BoernerK.GleasonH.JoppD. S. (2017). Burnout after patient death: Challenges for direct care workers. Journal of Pain and Symptom Management, 54(3), 317–325. https://doi.org/10.1016/j.jpainsymman.2017.06.006
4.
BraunV.ClarkeV. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
5.
CreswellJ.PothC. (2018). Qualitative inquiry and research design: Choosing among five approaches. SAGE.
6.
DawsonS. L. (2016). The direct care workforce-raising the floor of job quality. Generations, 40(1), 38–46.
7.
GhesquiereA.BagaajavA. (2020). We take care of people; what happens to us afterwards?” home health aides and bereavement care in hospice. Omega, 80(4), 615–628. https://doi.org/10.1177/0030222818754668
8.
GhesquiereA.McAfeeC.VillanuevaC. (2016). Bereavement experiences and coping among hospice home health aides. Gerontologist, 56(Suppl_3), 491. https://doi.org/10.1093/geront/gnw162.1977
9.
GleasonH. P.BoernerK.BarooahA. (2016). Supporting home health aides through a client’s death: The role of supervisors and coworkers. Geriatric Nursing (New York, N.Y.), 37(4), 278–283. https://doi.org/10.1016/j.gerinurse.2016.04.001
10.
HamannD. J. (2014). Does empowering resident families or nursing home employees in decision making improve service quality?Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 33(5), 603–623.
11.
HowesC. (2014). Raising wages for home care workers: Paths and impediments. In A paper series commemorating the 75th anniversary of the fair labor standards act (pp. 241–279). U.S. Department of Labor. https://www.dol.gov/asp/evaluation/reports/FLSAPaperSeries.pdf
12.
Kusmaul, N., & Wladkowski, S. P. (2021). Direct caregiving in older adults: How systems of care perpetuate the grand challenges and what social workers can do about it. Health & Social Work. doi: 10.1093/hsw/hlab017
13.
LaiD.CloyesK. G.ClaytonM. F.DoyonK.ReblinM.BeckA. C.EllingtonL. (2018). We’re the eyes and the ears, but we don’t have a voice: Perspectives of hospice aides. Journal of Hospice and Palliative Nursing: The Official Journal of the Hospice and Palliative Nurses Association, 20(1), 47–54. https://doi.org/10.1097/NJH.0000000000000407
14.
LindquistL.CameronK.Messerges-BernsteinJ.FriesemaE.ZickuhrL.BakerD. W.WolfM. (2012). Hiring and screening practices of agencies supplying paid caregivers to older adults. Journal of the American Geriatrics Society, 60(7), 1253–1259. https://doi.org/10.1111/j.1532-5415.2012.04047.x
15.
MitchellS. E.LaurensV.WeigelG. M.HirschmanK. B.ScottA. M.NguyenH. Q.HowardJ. M.LairdL.LevineC.DavisT. C.GassB.ShaidE.LiJ.WilliamsM. V.JackB. W. (2018). Care transitions from patient and caregiver perspectives. Annals of Family Medicine, 16(3), 225–231. https://doi.org/10.1370/afm.2222
16.
NewquistD.DeLiemaM.WilberK. (2015). Beware of data gaps in home care research. Medical Care Research and Review, 72(5), 622–640. https://doi.org/10.1177/1077558715588437
17.
OlsonR.ThompsonS. V.ElliotD. L.HessJ. A.RhotenK. L.ParkerK. N.WrightR. R.WipfliB.BettencourtK. M.BuckmasterA.MarinoM. (2016). Safety and health support for home care workers: The COMPASS randomized controlled trial. American Journal of Public Health, 106(10), 1823–1832.
ScottiD.HarmonJ.BehsonS. (2007). Links among high-performance work environment, service quality, and customer satisfaction. Journal of Healthcare Management, 522, 109–124.
20.
ShieldR.LoozeJ.TylerD.LeporeM.MillerS. (2014). Why and how do nursing homes implement culture change practices?Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 33(6), 737–763.
21.
StaleyM.GleasonH.BoernerK. (2015). Home health aides’ experience with client death: The role of agency policy. Gerontologist, 55(Suppl_2), 215.
22.
Tsui, E. K., Franzosa, E., Cribbs, K. A., Baron, S. (2018). Home care workers’ experiences of client death and disenfranchised grief. Qualitative Health Research, 29(3), 382–392.
23.
TsuiE. K.FranzosaE.CribbsK. A.BaronS. (2019). Home care workers’ experiences of client death and disenfranchised grief. Qualitative Health Research, 29(3), 382–392. https://doi.org/10.1177/1049732318800461
24.
TsuiE. K.FranzosaE.ReckreyJ. M.LaMonicaM.CimarolliV. R.BoernerK. (2021). Interventions to reduce the impact of client death on home care aides: Employers’ perspectives. Journal of Applied Gerontology, 1-9, 0733464821989859.
van RiesenbeckI.BoernerK.BarooahA.BurackO. R. (2015). Coping with client death: How prepared are home health aides and what characterizes preparedness?Home Health Care Services Quarterly, 34(3–4), 204–219. https://doi.org/10.1080/01621424.2015.1108890
27.
WholihanD.AndersonR. (2013). Empowering nursing assistants to improve end-of-life care. Journal of Hospice & Palliative Nursing, 15(1), 24–32.
28.
Wladkowski, S. P. (2017). Dementia caregivers and live discharge from hospice: What happens when hospice leaves? Journal of Gerontological Social Work, 60(2), 138–154. doi: 10.1080/01634372.2016.1272075.
29.
ZmoraR.StatzT. L.BirkelandR. W.McCarronH. R.FinlayJ. M.RosebushC. E.GauglerJ. E. (2021). Transitioning to long-term care: Family caregiver experiences of dementia, communities, and counseling. Journal of Aging and Health, 33(1–2), 133–146. https://doi.org/10.1177/0898264320963588.
