Anxiety, Depression, Quality of Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers.

Lauren T Starr, Karen Bullock, Karla Washington, Subhash Aryal, Debra Parker Oliver, George Demiris
Author Information
  1. Lauren T Starr: Department of Biobehavioral and Health Sciences, NewCourtland Center for Transitions and Health, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA. ORCID
  2. Karen Bullock: Department of Social Work, College of Humanities and Social Sciences, North Carolina State University, Raleigh, North Carolina, USA.
  3. Karla Washington: Division of Palliative Medicine, School of Medicine, Washington University in St. Louis, St. Louis, Missouri, USA.
  4. Subhash Aryal: BECCA (Biostatistics * Evaluation * Collaboration * Consultation * Analysis) Lab, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
  5. Debra Parker Oliver: Division of Palliative Medicine, School of Medicine, Washington University in St. Louis, St. Louis, Missouri, USA.
  6. George Demiris: Department of Biobehavioral and Health Sciences, NewCourtland Center for Transitions and Health, School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

Abstract

Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Secondary analysis of baseline data from two randomized clinical trials. Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers ( = 0.04), specifically in emotional ( = 0.02) and social ( = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.

Keywords

Associated Data

ClinicalTrials.gov | NCT01444027; NCT02929108

References

  1. J Am Geriatr Soc. 2019 Jul;67(7):1325-1326 [PMID: 30946488]
  2. J Palliat Med. 2021 May;24(5):689-696 [PMID: 33021460]
  3. J Palliat Med. 2017 Apr;20(4):366-371 [PMID: 27912042]
  4. Rehabil Psychol. 2013 Feb;58(1):28-35 [PMID: 23437997]
  5. Psychooncology. 2013 Mar;22(3):564-71 [PMID: 22275212]
  6. Gerontologist. 2005 Oct;45(5):634-41 [PMID: 16199398]
  7. Arch Intern Med. 2006 May 22;166(10):1092-7 [PMID: 16717171]
  8. Support Care Cancer. 2020 Nov;28(11):5185-5193 [PMID: 32060707]
  9. J Clin Nurs. 2020 Mar;29(5-6):996-1002 [PMID: 31793095]
  10. Am J Hosp Palliat Care. 2015 Jun;32(4):454-63 [PMID: 24707009]
  11. Qual Health Res. 2012 Aug;22(8):1114-25 [PMID: 22673093]
  12. Ann Clin Psychiatry. 2000 Mar;12(1):19-27 [PMID: 10798822]
  13. JAMA. 2013 Feb 6;309(5):470-7 [PMID: 23385273]
  14. J Gerontol B Psychol Sci Soc Sci. 2010 Jan;65B(1):5-13 [PMID: 19934166]
  15. Issues Ment Health Nurs. 2018 Jun;39(6):467-481 [PMID: 29451830]
  16. Int J Palliat Nurs. 2004 Feb;10(2):58-65; discussion 65 [PMID: 15039608]
  17. J Pain Symptom Manage. 2020 Jan;59(1):77-85 [PMID: 31419541]
  18. J Aging Health. 2017 Dec;29(8):1444-1458 [PMID: 27511956]
  19. Health Aff (Millwood). 2008 Mar-Apr;27(2):393-403 [PMID: 18332495]
  20. Am J Hosp Palliat Care. 2018 Feb;35(2):244-249 [PMID: 28393543]
  21. J Gen Intern Med. 2021 Apr;36(4):1071-1076 [PMID: 33464466]
  22. Depress Anxiety. 2019 Sep;36(9):813-823 [PMID: 31356710]
  23. J Natl Med Assoc. 2001 Feb;93(2):47-57 [PMID: 12653382]
  24. Am J Hosp Palliat Care. 2021 Jul 28;:10499091211034383 [PMID: 34318700]
  25. J Clin Oncol. 2010 Oct 10;28(29):4457-64 [PMID: 20837950]
  26. Am J Prev Med. 2015 Oct;49(4):526-33 [PMID: 26232907]
  27. Health Aff (Millwood). 2017 Jul 1;36(7):1283-1290 [PMID: 28679816]
  28. Am J Hosp Palliat Care. 2017 Nov;34(9):849-859 [PMID: 27465403]
  29. Palliat Med. 2014 Sep;28(8):1026-35 [PMID: 24821708]
  30. Lancet. 2017 Apr 8;389(10077):1453-1463 [PMID: 28402827]
  31. Am J Hosp Palliat Care. 2021 Feb;38(2):147-153 [PMID: 32588639]
  32. J Pain Symptom Manage. 2018 May;55(5):1408-1419 [PMID: 29366913]
  33. J Health Commun. 2017 Jul;22(7):584-592 [PMID: 28581896]
  34. Gerontologist. 2011 Aug;51(4):453-62 [PMID: 21402646]
  35. Palliat Support Care. 2015 Jun;13(3):567-73 [PMID: 24524662]
  36. Br J Cancer. 2018 Nov;119(11):1307-1315 [PMID: 30425351]
  37. Aging Ment Health. 2004 Jul;8(4):316-29 [PMID: 15370048]
  38. J Palliat Med. 2012 Oct;15(10):1137-41 [PMID: 22957678]
  39. Am J Hosp Palliat Care. 2019 Dec;36(12):1114-1123 [PMID: 30991813]
  40. J Nerv Ment Dis. 2015 Aug;203(8):578-82 [PMID: 26172387]
  41. Health Soc Work. 2008 Nov;33(4):267-74 [PMID: 19070274]
  42. J Clin Oncol. 2010 Oct 1;28(28):4371-5 [PMID: 20805463]
  43. Omega (Westport). 2001;43(4):349-61 [PMID: 12569925]
  44. Health Aff (Millwood). 2013 Mar;32(3):552-61 [PMID: 23459735]
  45. Int Nurs Rev. 2013 Jun;60(2):178-87 [PMID: 23692000]
  46. Geriatr Nurs. 2014 Mar-Apr;35(2):126-31 [PMID: 24314743]
  47. J Soc Work End Life Palliat Care. 2008 Jan 1;4(4):312-332 [PMID: 19779584]
  48. J Palliat Med. 2014 Jul;17(7):845-56 [PMID: 24992371]
  49. NCHS Data Brief. 2018 Feb;(303):1-8 [PMID: 29638213]
  50. Arch Intern Med. 2007 Jan 8;167(1):40-6 [PMID: 17210876]
  51. Gerontol Geriatr Med. 2020 May 19;6:2333721420920414 [PMID: 32490039]
  52. J Gen Intern Med. 2006 Jun;21(6):547-52 [PMID: 16808734]
  53. J Affect Disord. 2008 Aug;109(3):233-50 [PMID: 18155775]
  54. SSM Popul Health. 2020 Feb 21;10:100561 [PMID: 32140544]
  55. J Soc Work End Life Palliat Care. 2011;7(1):83-98 [PMID: 21391079]
  56. Am J Hosp Palliat Care. 2021 Nov;38(11):1378-1390 [PMID: 33423532]
  57. Gerontologist. 2005 Feb;45(1):90-106 [PMID: 15695420]
  58. Palliat Med. 2019 Sep;33(8):926-941 [PMID: 31184529]
  59. J Palliat Care. 2020 Jul;35(3):154-160 [PMID: 31696787]
  60. Arch Intern Med. 2010 Sep 27;170(17):1533-40 [PMID: 20876403]
  61. Eur J Cancer Care (Engl). 2005 Dec;14(5):463-4 [PMID: 16274469]
  62. Am J Hosp Palliat Care. 2016 Apr;33(3):291-305 [PMID: 25550406]
  63. J Palliat Med. 2022 Mar;25(3):479-487 [PMID: 34788577]
  64. Oncol Nurs Forum. 1994 Aug;21(7):1189-95 [PMID: 7971429]
  65. J Marital Fam Ther. 2004 Oct;30(4):427-38 [PMID: 15532251]
  66. J Racial Ethn Health Disparities. 2018 Feb;5(1):117-140 [PMID: 28275996]
  67. J Am Geriatr Soc. 2016 Sep;64(9):1789-97 [PMID: 27588580]
  68. J Pain Symptom Manage. 2007 Nov;34(5):472-9 [PMID: 17900854]
  69. J Natl Black Nurses Assoc. 2017 Dec;28(2):19-25 [PMID: 30282137]
  70. J Anxiety Disord. 2015 Apr;31:38-42 [PMID: 25725310]
  71. J Am Geriatr Soc. 2019 Jul;67(7):1345-1352 [PMID: 30946495]
  72. Psychol Assess. 2018 Aug;30(8):1096-1106 [PMID: 29565614]
  73. Psychooncology. 2008 Jan;17(1):26-33 [PMID: 17328030]
  74. J Palliat Med. 2013 Nov;16(11):1329-34 [PMID: 24073685]
  75. JAMA Netw Open. 2020 Aug 3;3(8):e2014639 [PMID: 32833020]
  76. J Gen Intern Med. 2001 Sep;16(9):606-13 [PMID: 11556941]
  77. Gerontologist. 2002 Apr;42(2):237-72 [PMID: 11914467]
  78. J Natl Med Assoc. 2006 Sep;98(9):1532-40 [PMID: 17019925]
  79. J Soc Work End Life Palliat Care. 2013;9(4):256-71 [PMID: 24295096]
  80. BMC Psychiatry. 2020 Sep 29;20(1):474 [PMID: 32993604]

Grants

  1. P30 AG073105/NIA NIH HHS
  2. R01 CA203999/NCI NIH HHS
  3. T32 NR009356/NINR NIH HHS

MeSH Term

Adolescent
Anxiety
Anxiety Disorders
Caregiver Burden
Caregivers
Communication
Depression
Hospices
Humans
Quality of Life
Randomized Controlled Trials as Topic

Word Cloud

Created with Highcharts 10.0.0hospicecaregiversBlackWhitefamilycaregiverdepressionQOLanxietyburdencommunicationhealthAnxietyperceptions = 0racialamongcaregiver-centeredQuestionnaireCaregiverBurdenCaregiver-CenteredCommunicationacrossdemographicsocioeconomicreportedmoderate-to-severe32socialfactorsdifferencesmentalClinicalTrialsgovreducedqualitylifecommonproblemsunknowndisparitiesexperiencesexistcompareteamSecondaryanalysisbaselinedatatworandomizedclinicaltrialsSevenhundredtwenty-twoages18+MidwesternNortheasternUnitedStatesMeasuresincludedGeneralizedDisorder-7GAD-7PatientHealthPHQ-9Quality-of-LifeIndex-RevisedCQLI-RZaritInterviewZBI-7CCCQdifferedvariablesNearlyone-third1%depressivesymptoms0%lower04specificallyemotional020005domainsmultipleregressionanalysescontrollingpatientfoundDespiteexperiencesimilarlyhighlevelsInterventionssupportgroupsresearchidentifiesmediatedeterminantspopulationneededdevelopmentvalidationculture-concordantscreeningtoolsraciallydiversepopulationsrecommendedTrialregistration:NCT02929108NCT01444027DepressionQualityLifePerceptionsHospiceFamilyCaregiverscareracedisparity

Similar Articles

Cited By