Exploring healthcare assistants’ role and experience in pain assessment and management for people with advanced dementia towards the end of life: a qualitative study
Main Article Content
Keywords
Dementia, Palliative care, Pain assessment, Pain management, Healthcare assistants
Abstract
Pain assessment and management are critical aspects of care for individuals with dementia nearing the end of life. However, challenges arise when patient self-report is compromised or unavailable. Observational pain assessments are recommended in such cases, but healthcare professionals often face difficulties in their application without additional patient information. Little research has focused on the role, perspectives, and experiences of healthcare assistants in pain assessment and management in dementia care, highlighting the need for exploration in this area.
Methods: This qualitative study utilized key informant interviews with healthcare assistants caring for individuals with advanced dementia nearing the end of life, across hospice, nursing home, and acute care settings. Thematic analysis was employed to interpret interview data collected .
Results: Fourteen participants, predominantly female with an average of 15.4 years of caring experience, contributed to the study. Three key themes emerged: recognizing pain, reporting pain, and the need for upskilling. Participants demonstrated the ability to identify obvious and subtle indicators of pain, drawing on their extensive knowledge of patient norms. Effective pain reporting was influenced by professional relationships and perceived value in their role, impacting the thoroughness and accuracy of pain reports. Participants expressed a desire for additional training, particularly in the use and reporting of basic pain assessment tools.
Conclusions: Healthcare assistants play a crucial frontline role in patient care, often being the first to detect changes suggestive of pain and communicate with professional staff. However, addressing stigma associated with their role and providing opportunities for upskilling are essential to enhance the quality of pain assessment and management in dementia care.
References
2. Bunn, F., Burn, A.-M., Goodman, C., Rait, G., Norton, S., Robinson, L., et al. (2014). Comorbidity and dementia: A scoping review of the literature. BMC Med, 12, 192. doi: 10.1186/s12916-014-0192-4.
3. Klapwijk, M. S., Caljouw, M. A. A., Van Soest-Poortvliet, M. C., van der Steen, J. T., & Achterberg, W. P. (2014). Symptoms and treatment when death is expected in patients with dementia in long-term care facilities. BMC Geriatr, 14, 99. doi: 10.1186/1471-2318-14-99.
4. Hendriks, S. A., Smalbrugge, M., Galindo-Garre, F., Hertogh, C. M., & van der Steen, J. T. (2015). From admission to death: Prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia. JAMA, 16(6), 475–481.
5. Hadjistavropoulos, T., Herr, K., Turk, D. C., Fine, P. G., Dworkin, R. H., Helme, R., et al. (2007). An inter-disciplinary expert consensus statement on assessment of pain in older persons. Clin J Pain, 23(1), S1–S43. doi: 10.1097/AJP.0b013e31802be869.
6. Jordan, A., & Lloyd-Williams, M. (2010). Distress and pain in dementia. In J. C. Hughes, M. Lloyd-Williams, & G. A. Sachs (Eds.), Supportive care for the person with dementia (pp. 129–137). Oxford University Press.
7. Park, J., Castellanos-Brown, K., & Belcher, J. (2010). A review of observational pain scales in nonverbal elderly with cognitive impairments. Res Soc Work Prac, 20(6), 651–664. doi: 10.1177/1049731508329394.
8. Lints-Martindale, A. C., Hadjistavropoulos, T., Lix, L. M., & Thorpe, L. (2012). A comparative investigation of observational pain assessment tools for older adults with dementia. Clin J Pain, 28(3), 226–237. doi: 10.1097/AJP.0b013e3182290d90.
9. American Geriatrics Society Panel on Persistent Pain in Older Persons. (2002). The management of persistent pain in older persons. J Am Geriatr Soc, 50(6 supplement), S205–S224.
10. Abbey, J., Piller, N., De Bellis, A., Esterman, A., Parker, D., & Giles, L., et al. (2004). The Abbey Pain Scale: A 1-minute numerical indicator for people with end-stage dementia. Int J Palliat Nurs, 10(1), 6–13. doi: 10.12968/ijpn.2004.10.1.12013.
11. Warden, V., Hurley, A. C., & Volicer, L. (2003). Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. JAMA, 4(1), 9–15.
12. Pasero, C., & McCaffery, M. (2005). No self-report means no pain-intensity rating. Am J Nurs, 105(10), 50–53. doi: 10.1097/00000446-200510000-00032.
13. Buffum, M. D., Hutt, E., Chang, V. T., Craine, M. H., & Snow, A. L. (2007). Cognitive impairment and pain management: Review of issues and challenges. J Rehabil Res Dev, 44, 315–330. doi: 10.1682/JRRD.2006.06.0064.
14. Ersek, M., Herr, K., Neradilek, M. B., Buck, H. G., & Black, B. (2010). Comparing the psychometric properties of the Checklist of Nonverbal Pain Behaviors (CNPI) and the Pain Assessment in Advanced Dementia (PAIN-AD) instruments. Pain Med, 11(3), 395–404. doi: 10.1111/j.1526-4637.2009.00787.x.
15. Ruder, S. (2010). Seven tools to assist hospice and home care clinicians in pain management at end of life. Home Healthc Nurse, 128(8), 458–468. doi: 10.1097/NHH.0b013e3181ed7504.
16. Department of Health. (2013). The Cavendish Review: An independent review of healthcare assistants and support workers in NHS and social care settings. Retrieved from [link].
17. Spilsbury, K., & Meyer, J. (2004). Use, misuse and non-use of health care assistants: Understanding the work of health care assistants in a hospital setting. J Nurs Manag, 12(6), 411–418. doi: 10.1111/j.1365-2834.2004.00515.x.
18. Kessler, I., Heron, P., Dopson, S., Magee, H., Swain, D., & Ashkam, J. (2010). The nature and consequences of support workers in a hospital setting. NHS Institute for Health Research.
19. Stacey, C. L. (2005). Finding dignity in dirty work: The constraints and rewards of low-wage home care labor. Sociol Health Illn, 27(6), 831–854. doi: 10.1111/j.1467-9566.2005.00476.x.
20. Wilson, C. B., Davies, S., & Nolan, M. (2009). Developing personal relationships in care homes: Realizing the contributions of staff, residents, and family members. Ageing Soc, 29, 1041–1063. doi: 10.1017/S0144686X0900840X.
21. Lloyd, J. V., Schneider, J., Scales, K., Bailey, S., & Jones, R. (2011). Ingroup identity as an obstacle to effective multiprofessional and interprofessional teamwork: Findings from an ethnographic study of healthcare assistants in dementia care. J Interprof Care, 25, 345–351. doi: 10.3109/13561820.2011.567381.
22. Morgan, D. G., Kosteniuk, J. G., O’Connell, M. E., Bello-Haas, V. D., Stewart, N. J., & Karunanayake, C. (2016). Dementia-related work activities of home care nurses and aides: Frequency, perceived competence, and continuing education priorities. Educ Gerontol, 42(2), 120–135. doi: 10.1080/03601277.2015.1083390.
23. Ingleton, C., Chatwin, J., Seymour, J., & Payne, S. (2011). The role of health care assistants in supporting district nurses and family carers to deliver palliative care at home: Findings from an evaluation project. J Clin Nurs, 20, 2043–2052. doi: 10.1111/j.1365-2702.2010.03563.x.
24. De Witt Jansen, B., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfatrick, S. J., et al. (2016). Nurses’ experiences of pain management for people with advanced dementia approaching the end of life: A qualitative study. J Clin Nurs, DOI: 10.1111/jocn.13442.
25. De Witt Jansen, B., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfatrick, S. J., et al. (2016). “There’s a Catch-22”. The complexities of pain management for people with advanced dementia nearing the end of life: A qualitative exploration of physicians’ perspectives. Pall Med, DOI: 10.1177/0269216316673549.
Article Sidebar
Article Details
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
All articles published in JPTCP are licensed under Copyright Creative Commons Attribution-NonCommercial 4.0 International License.
