In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers.
Methods:
Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases.
Results:
Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills.
Conclusion:
Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC’s transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.
WolffJDySFrickKKasperJ. End-of-life care: findings from a national survey of informal caregivers. Arch Intern Med. 2007;167(1):40–46.
2.
GrandeGStajduharKAounS, et al.Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med. 2009;23(4):339–344.
3.
HaltiaOFärkkiläNRoineRP, et al.The indirect costs of palliative care in end-stage cancer: a real-life longitudinal register- and questionnaire-based study. Palliat Med. 2018;32(2):493–499.
4.
RowlandCHanrattyBPillingMvan den BergBGrandeG. The contributions of family care-givers at end of life: a national post-bereavement census survey of cancer carers’ hours of care and expenditures. Palliat Med. 2017;31(4):346–355.
5.
HudsonP. Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs. 2004;10(2):58–65.
6.
GrandeGRowlandCvan den BergBHanrattyB. Psychological morbidity and general health among family caregivers during end-of-life cancer care: a retrospective census survey. Palliat Med. 2018;32(10):1605–1614.
7.
MatthewsBL. Life of the second-order patient: factors impacting the informal caregiver. J Loss Trauma. 2018;23(1):29–43.
8.
AlpertPT. Who’s caring for the caregiver?Home Health Care Manag Pract. 2014;26(4):266–268.
9.
FunkLStajduharKToyeCAounSGrandeGToddC. Part 2: home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008). Palliat Med. 2010;24(6):594–607.
StajduharKFunkLToyeCGrandeGAounSToddC. Part 1: home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliat Med. 2010;24(6):573–593.
12.
ConnorSR. Hospice and Palliative Care: The Essential Guide. 3rd ed. New York, NY: Routledge; 2018:217–231.
13.
CaperK. Hospice Care in the UK 2016: Scope, Scale, and Opportunities. London, England: Hospice UK; 2016.
14.
National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization; 2018.
DillonEC. How home hospice care facilitates patient and family engagement. Death Stud. 2016;40(10):591–600.
17.
JackBAMitchellTKCopeLCO’BrienMR. Supporting older people with cancer and life-limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of hospice at home care. J Adv Nurs. 2016;72(9):2162–2172.
18.
NohH. Values important to terminally ill African American older adults in receiving hospice care. J Soc Work End Life Palliat Care. 2014;10(4):338–355.
19.
PhongtankuelVScherbanBAReidMC, et al.Why do home hospice patients return to the hospital? A study of hospice provider perspectives. J Palliat Med. 2016;19(1):51–56.
20.
PizziMA. Promoting health, wellness, and quality of life at the end of life: hospice interdisciplinary perspectives on creating a good death. J Allied Health. 2014;43(4):212–220.
21.
EllingtonLCloyesKGXuJ, et al.Supporting home hospice family caregivers: Insights from different perspectives. Palliat Support Care. 2018;16(2):209–219.
22.
CloyesKGCarpenterJGBerryPHReblinMClaytonMEllingtonL. A true human interaction. J Hosp Palliat Nurs. 2014;16(5):282–290.
23.
WaldropDPRinfretteES. Can short hospice enrollment be long enough? Comparing the perspectives of hospice professionals and family caregivers. Palliat Support Care. 2009;7(1):37.
24.
LavertyDArberAFaithfullS. Respite for patients and carers in neurodegenerative disease: a grounded theory study. Eur J Palliat Care. 2016;23(4):175–179.
25.
OliverDPDemirisGWashingtonKTClarkCThomas-JonesD. Challenges and strategies for hospice caregivers: a qualitative analysis. Gerontologist. 2017;57(4):648–656.
26.
WashingtonKTWittenberg-LylesEOliverDP, et al.Rethinking family caregiving: tailoring cognitive–behavioral therapies to the hospice experience. Health Soc Work. 2014;39(4):244–250.
27.
AlbrightDLWashingtonKParker-OliverDLewisAKruseRLDemirisG. The social convoy for family caregivers over the course of hospice. J Pain Symptom Manage. 2016;51(2):213–219.
28.
KirkendallAHollandJMKeeneJRLunaN. Evaluation of hospice care by family members of Hispanic and non-Hispanic patients. Am J Hosp Palliat Care. 2015;32(3):313–321.
29.
LeeJChaC. Unmet needs and caregiver burden among family caregivers of hospice patients in South Korea. J Hosp Palliat Nurs. 2017;19(4):323–331.
30.
ReblinMDonaldsonGEllingtonLMooneyKCasertaMLundD. Spouse cancer caregivers’ burden and distress at entry to home hospice. J Soc Pers Relat. 2016;33(5):666–686.
31.
CandyBHolmanALeurentBDavisSJonesL. Hospice care delivered at home, in nursing homes and in dedicated hospice facilities: a systematic review of quantitative and qualitative evidence. Int J Nurs Stud. 2011;48(1):121–133.
32.
WhittemoreRKnaflK. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546–553.
WashingtonKTOliverDPGageLAAlbrightDLDemirisG. A multimethod analysis of shared decision-making in hospice interdisciplinary team meetings including family caregivers. Palliat Med. 2016;30(3):270–278.
35.
ChiNDemirisGPikeKCWashingtonKOliverDP. Pain management concerns from the hospice family caregivers’ perspective. Am J Hosp Palliat Care. 2018;35(4):601–611.
ThomasJHardenA. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:1–10.
38.
Wittenberg-LylesEWashingtonKDemirisGOliverDPShaunfieldS. Understanding social support burden among family caregivers. Health Commun. 2014;29(9):901–910.
39.
ReeseDJSmithMRButlerCShresthaSErwinDO. African American client satisfaction with hospice: a comparison of primary caregiver experiences within and outside of hospice. Am J Hosp Palliat Care. 2014;31(5):495–502.
40.
LaValleySA. End-of-life caregiver social support activation: the roles of hospice clinicians and professionals. Qual Health Res. 2018;28(1):87–97.
41.
ThienprayoonRMarksEFunesMMartinez-PuenteLWinickNLeeSC. Perceptions of the pediatric hospice experience among English- and Spanish-speaking families. J Palliat Med. 2016;19(1):30–41.
42.
TablerJUtzRLEllingtonL, et al.Missed opportunity: hospice care and the family. J Soc Work End Life Palliat Care. 2015;11(3-4):224–243.
43.
HoldsworthLM. Bereaved carers’ accounts of the end of life and the role of care providers in a ‘good death’: a qualitative study. Palliat Med. 2015;29(9):834–841.
44.
TotmanJPistrangNSmithSHennesseySMartinJ. ‘You only have one chance to get it right’: a qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer. Palliat Med. 2015;29(6):496–507.
45.
JackBAO’BrienMRScruttonJBaldryCRGrovesKE. Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service. J Clin Nurs. 2015;24(1-2):131–140.
46.
McKayEATaylorAEArmstrongC. “What she told us made the world of difference”: Carers’ perspectives on a hospice at home service. J Palliat Care. 2013;29(3):170–177.
47.
BorlandRGlackinMJordanJ. How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer. Eur J Cancer Care. 2014;23(5):701–711.
48.
LeeHSMeliaKMYaoCLinCChiuTHuW. Providing hospice home care to the terminally ill elderly people with cancer in Taiwan: family experiences and needs. Am J Hosp Palliat Care. 2014;31(6):628–635.
49.
AounSSlatyerSDeasKNekolaichukC. Family caregiver participation in palliative care research: challenging the myth. J Pain Symptom Manage. 2016;53(5):851–861.
50.
ShalevAPhongtankuelVReidMC, et al.Home hospice caregivers’ perceived information needs. Am J Hosp Palliat Care. 2019;26(4):302–307.
51.
MatthewsBL. Hospice informal caregivers’ perception of a good death experience: a SERVQUAL analysis. Serv Mar Q. 2018;39(1):64–77.
52.
BelgacemBAuclairCFedorMC, et al.A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: a randomised clinical trial. Eur J Oncol Nurs. 2013;17(6):870–876.
53.
DiBiasioELTenoJMClarkMASpenceCCasarettD. Development of an assessment to examine training of the hospice primary caregiver. J Palliat Med. 2016;19(6):639–645.
54.
ReblinMCloyesKGCarpenterJBerryPHClaytonMFEllingtonL. Social support needs: discordance between home hospice nurses and former family caregivers. Palliat Support Care. 2015;13(3):465–472.
55.
AngeloJKEganRReidK. Essential knowledge for family caregivers: a qualitative study. Int J Palliat Nurs. 2013;19(8):383–388.
56.
AustinLEwingGGrandeG. Factors influencing practitioner adoption of carer-led assessment in palliative homecare: a qualitative study of the use of the carer support needs assessment tool (CSNAT). Plos One. 2017;12(6):1–15.
57.
KnightingKO’BrienMRRoeB, et al.Development of the carers’ alert thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study. BMC Palliat Care. 2015;14(1):1–13.
58.
EwingGAustinLGrandeG. The role of the carer support needs assessment tool in palliative home care: a qualitative study of practitioners’ perspectives of its impact and mechanisms of action. Palliat Med. 2016;30(4):392–400.
59.
MooreARBastianRGApentengBA. Communication within hospice interdisciplinary teams: a narrative review. Am J Hosp Palliat Care. 2016;33(10):996–1012.
60.
ScharlachAEKellamROngNBaskinAGoldsteinCFoxPJ. Cultural attitudes and caregiver service use. J Gerontol Soc Work. 2006;47(1-2):133–156.
61.
MunozBGarrettEReeseDRobertsM. Barriers to employment of African American professionals in hospice: a qualitative study with African American social work students. Am J Hosp Palliat Care. 2015;32(3):280–285.
62.
JohnsonKSPayneRKuchibhatlaMN. What are hospice providers in the Carolinas doing to reach African Americans in their service area?J Palliat Med. 2016;19(2):183–189.
63.
Diversity. National Hospice and Palliative Care Organization. Diversity. 2018. https://www.nhpco.org/diversity. Accessed December 21, 2018.
64.
ReeseDJBuilaSCoxSDavisJOlsenMJurkowskiE. University–community–hospice partnership to address organizational barriers to cultural competence. Am J Hosp Palliat Care. 2017;34(1):64–78.
65.
ClaytonMFHulettJKaurKReblinMWilsonAEllingtonL. Nursing support of home hospice caregivers on the day of patient death. Oncol Nurs Forum. 2017;44(4):457–464.
66.
MendesA. Nursing care and maintaining professional boundaries. Br J Community Nurs. 2017;22(8):407–408.
67.
GhesquiereARAldridgeMDJohnson-HürzelerRKaplanDBruceMLBradleyE. Hospice services for complicated grief and depression: results from a national survey. J Am Geriatr Soc. 2015;63(10):2173–2180.
68.
CandrianCTateCBroadfootKTsantesAMatlockDKutnerJ. Designing effective interactions for concordance around end-of-life care decisions: lessons from hospice admission nurses. Behav Sci (Basel). 2017;7(2):22.
69.
GillettKO’NeillBBloomfieldJG. Factors influencing the development of end-of-life communication skills: a focus group study of nursing and medical students. Nurse Educ Today. 2016;36:395–400.
70.
MacLeanSKellyMGeddesFDellaP. Use of simulated patients to develop communication skills in nursing education: an integrative review. Nurse Educ Today. 2017;48:90–98.
71.
DiBiasioELClarkMAGozaloPLSpenceCCasarettDJTenoJM. Timing of survey administration after hospice patient death: stability of bereaved respondents. J Pain Symptom Manage. 2015;50(1):17–27.
