Development of and Testing Novel Questionnaires Assessing Palliative Care-Related Knowledge, Attitudes, and Confidence Among Home Healthcare Clinicians, Patients, and Caregivers.

Ashley M Chastain, Jingjing Shang, Komal P Murali, Lori King, Charity Ogunlusi, Suning Zhao, Jung A Kang, Yihong Zhao, Khadra Dualeh, Margaret V McDonald
Author Information

Abstract

Palliative care improves the quality of life for seriously ill patients, but misconceptions and knowledge gaps hinder its implementation in home healthcare (HHC). This study developed and pilot-tested HHC-specific questionnaires to measure palliative care knowledge, attitudes, and confidence (PC-KAC) among clinicians, patients, and caregivers. Using literature reviews, expert input, and cognitive interviews, the questionnaires were refined to ensure clarity, practical relevance, and content validity. Pilot testing revealed widespread confusion about palliative care, with patients and caregivers often conflating it with hospice care and holding misconceptions about opioid use for pain and symptom management. While clinicians demonstrated adequate knowledge, gaps in pain management and confidence in handling emergencies were evident. These findings highlight the need for targeted education and training to integrate palliative care effectively into HHC, improving patient outcomes and supporting interdisciplinary collaboration.

References

  1. J Palliat Med. 2019 Apr;22(4):408-412 [PMID: 30589624]
  2. Health Serv Res. 2022 Aug;57(4):872-880 [PMID: 34806185]
  3. J Palliat Med. 2018 Dec;21(12):1684-1689 [PMID: 30179523]
  4. Am J Hosp Palliat Care. 2023 Jun;40(6):613-619 [PMID: 36113062]
  5. Am J Hosp Palliat Care. 2018 Feb;35(2):236-243 [PMID: 28166640]
  6. J Hosp Palliat Nurs. 2024 Aug 1;26(4):188-194 [PMID: 38885419]
  7. J Palliat Med. 2022 Oct;25(10):1579-1598 [PMID: 35704053]
  8. Curr Geriatr Rep. 2021;10(4):141-147 [PMID: 34849331]
  9. J Appl Behav Anal. 1977 Spring;10(1):103-16 [PMID: 16795538]
  10. J Biomed Inform. 2009 Apr;42(2):377-81 [PMID: 18929686]
  11. J Cancer Educ. 2020 Apr;35(2):214-240 [PMID: 31119708]
  12. Chronic Obstr Pulm Dis. 2020 Oct;7(4):327-335 [PMID: 32989940]
  13. J Palliat Med. 2017 Jan;20(1):23-28 [PMID: 27574868]
  14. Med Care. 2020 Aug;58(8):665-673 [PMID: 32520768]
  15. JAMA Intern Med. 2018 Jun 1;178(6):820-829 [PMID: 29710177]
  16. J Palliat Med. 2020 May;23(5):692-697 [PMID: 31644370]
  17. Int J Behav Nutr Phys Act. 2011 Dec 09;8:136 [PMID: 22152048]
  18. J Natl Compr Canc Netw. 2013 Mar;11 Suppl 1:S17-27 [PMID: 23520182]
  19. Lancet. 2001 Apr 28;357(9265):1311-5 [PMID: 11343734]
  20. Home Healthc Now. 2018 Mar/Apr;36(2):84-92 [PMID: 29498988]
  21. J Phys Act Health. 2006 Feb;3(s1):S190-S207 [PMID: 28834520]
  22. J Biomed Inform. 2019 Jul;95:103208 [PMID: 31078660]
  23. N Engl J Med. 2015 Aug 20;373(8):747-55 [PMID: 26287850]
  24. Palliat Support Care. 2018 Jun;16(3):260-268 [PMID: 28462749]
  25. Home Healthc Now. 2017 Jul/Aug;35(7):373-377 [PMID: 28650367]
  26. Int J Environ Res Public Health. 2022 Feb 03;19(3): [PMID: 35162772]
  27. J Palliat Med. 2017 Jan;20(1):84-92 [PMID: 27912043]
  28. Home Healthc Now. 2023 Jan-Feb 01;41(1):57 [PMID: 36607215]
  29. BMC Palliat Care. 2023 Aug 29;22(1):122 [PMID: 37641096]

Grants

  1. K23 AG083125/NIA NIH HHS
  2. T32 NR014205/NINR NIH HHS

MeSH Term

Humans
Palliative Care
Surveys and Questionnaires
Caregivers
Male
Female
Health Knowledge, Attitudes, Practice
Home Care Services
Middle Aged
Adult
Pilot Projects
Aged

Word Cloud

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