title: Exploring healthcare assistants' role and experience in pain assessment and management for people with advanced dementia towards the end of life: a qualitative study.
abstract: BACKGROUND
  Pain assessment and management are key aspects in the care of people with dementia approaching the end of life but become challenging when patient self-report is impaired or unavailable. Best practice recommends the use of observational pain assessments for these patients; however, difficulties have been documented with health professionals' use of these tools in the absence of additional collateral patient knowledge. No studies have explored the role, perspectives and experiences of healthcare assistants in pain assessment and management in dementia; this study provides insight into this important area.
  
  
  METHODS
  A qualitative approach was adopted, using key informant interviews with healthcare assistants caring for people with advanced dementia approaching the end of life in hospice, nursing home and acute care settings. Thematic analysis was the analytic approach taken to interpretation of interview data. Data were collected between June 2014 and September 2015.
  
  
  RESULTS
  Fourteen participants took part in the study. Participants' average length of caring experience was 15.4 years and most were female. Three key themes emerged: recognising pain, reporting pain, and upskilling. Participants were often the first to notice obvious causes of pain and to detect changes in patient norms which signified hidden causes of pain. Comprehensive knowledge of resident norms enabled participants to observe for behavioural and nonverbal indicators of pain and distinguish these from non-pain related behaviours. Pain reporting was heavily impacted by relationships with professional staff and the extent to which participants felt valued in their role. Positive relationships resulted in comprehensive pain reports; negative relationships led to perfunctory or ambiguous reporting. Participants emphasised a desire for further training and upskilling, including in the use and reporting of basic pain tools.
  
  
  CONCLUSIONS
  Healthcare assistants are frontline staff who have a key role in direct patient care, spending a considerable amount of time with patients in comparison to other health professionals. These staff are often first to notice changes in patients that may signify pain and to alert professional staff. However, to ensure the quality of these reports, further efforts must be made in reversing stigma attached to this role and in upskilling these members of the healthcare team.
authors.affiliation: School of Pharmacy, Queen's University Belfast, Belfast, UK.
authors.forename: Bannin De Witt
authors.initials: BW
authors.lastname: Jansen
authors.affiliation: School of Nursing and Midwifery, Belfast, UK.
authors.forename: Kevin
authors.initials: K
authors.lastname: Brazil
authors.affiliation: Centre for Public Health, School of Medicine, Dentistry and Biomedical Sciences, Belfast, UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Passmore
authors.affiliation: Patient and Public Involvement Representative, Carer for a person living with dementia, Belfast, UK.
authors.forename: Hilary
authors.initials: H
authors.lastname: Buchanan
authors.affiliation: Kerrsland Surgery, Belfast, UK.
authors.forename: Doreen
authors.initials: D
authors.lastname: Maxwell
authors.affiliation: Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK.|All Ireland Institute of Hospice and Palliative Care, Our Lady's Hospice and Care Services, Dublin, Ireland.
authors.forename: Sonja J
authors.initials: SJ
authors.lastname: McIlfatrick
authors.affiliation: Marie Curie Hospice, Belfast, UK.
authors.forename: Sharon M
authors.initials: SM
authors.lastname: Morgan
authors.affiliation: Northern Ireland Hospice, Belfast, UK.
authors.forename: Max
authors.initials: M
authors.lastname: Watson
authors.affiliation: School of Pharmacy, Queen's University Belfast, 97 Lisburn Road, Belfast, BT9 7BL, UK. c.parsons@qub.ac.uk.
authors.forename: Carole
authors.identifier: http://orcid.org/0000-0003-0012-3927
authors.initials: C
authors.lastname: Parsons
mesh_terms: D000328:Adult; D000488:Allied Health Personnel / Q000193:education / Q000592:standards*; D000067289:Behavior Observation Techniques; D003704:Dementia / Q000628:therapy*; D005260:Female; D006801:Humans; D007318:Inservice Training; D008297:Male; D008875:Middle Aged; D009660:Northern Ireland; D010146:Pain / Q000517:prevention & control*; D010147:Pain Measurement / Q000379:methods / Q000592:standards; D024382:Professional Role; D011369:Professional-Patient Relations; D013727:Terminal Care / Q000592:standards*; D055815:Young Adult
keywords: Dementia; Healthcare assistant; Pain assessment; Pain management; Palliative care