"A tool doesn't add anything". The importance of added value: Use of observational pain tools with patients with advanced dementia approaching the end of life-a qualitative study of physician and nurse experiences and perspectives.

BACKGROUND: Observational pain tools (OPTs) are widely recommended in health care policies, clinical guidelines, and recommendations for pain assessment and management. However, it is unclear whether and how these tools are used for patients with advanced dementia approaching the end of life. AIM: To explore hospice, secondary, and primary care physicians' and nurses' use of OPTs with patients dying with advanced dementia and their perspectives on practice development and training needs. METHODS: Twenty-three physicians and 24 nurses with experience of caring for people dying with advanced dementia were recruited from primary care surgeries (n = 5), hospitals (n = 6), hospices (n = 4), and nursing homes (n = 10). Semistructured, face-to-face interviews were conducted. Interviews were digitally recorded, transcribed verbatim, and thematic analysis applied to identify core themes. RESULTS: Three key themes emerged: (1) use of OPTs in this vulnerable patient population, (2) barriers to the use of OPTs and lack of perceived "added value", and (3) perspectives on practice development and training in pain assessment in advanced dementia at end of life. Just over one-quarter of participants (n = 13) routinely used OPTs. Reasons for nonuse included perceived limitations of such tools, difficulties with their use and integration with existing practice, and lack of perceived added value. Most participants strongly emphasised a need for ongoing training and development which facilitated transfer of knowledge and multidisciplinary skills across professions and specialties. CONCLUSIONS: Health professionals require ongoing support in developing and integrating change to existing pain assessment protocols and approaches. These findings have important implications for health education, practice, and policy.

Evaluation of the impact of telementoring using ECHO© technology on healthcare professionals' knowledge and self-efficacy in assessing and managing pain for people with advanced dementia nearing the end of life.

BACKGROUND: Pain assessment and management in advanced and end-stage dementia are challenging; patients are at risk of under-diagnosis, under-assessment and under-treatment. Previous research has highlighted the importance of needs-driven training and development in this area for physicians, nurses and healthcare assistants (HCAs) across specialties, disciplines and care settings. This study used teleconferencing technology to connect healthcare professionals across multiple settings and disciplines in real-time clinics, based on the Project ECHO© model. This paper reports the evaluation of the clinics by physicians, nurses and HCAs, including their knowledge and self-efficacy in pain assessment and management for patients with advanced and end-stage dementia. METHODS: A mixed method evaluation comprising quantitative survey of self-reported knowledge and self-efficacy pre- and post-ECHO clinic participation, and qualitative exploration of experiences of the clinics using focus group interviews. A census approach to sampling was undertaken. Pre- and post-ECHO evaluations were administered electronically using Survey Monkey software. Mann-Whitney U tests were used to explore differences in knowledge and self-efficacy scores pre- and post-ECHO clinic participation. Statistical significance was set a-priori at p = 0.05. Focus groups were video- and audio-recorded, transcribed verbatim and analysed using Braun & Clarke's model of thematic analysis. RESULTS: Eighteen healthcare professionals [HCPs] (physicians [n = 7], nurses [n = 10], HCA [n = 1]) and twenty HCPs (physicians [n = 10], nurses [n = 10]) completed pre- and post-ECHO evaluations respectively, reporting improvements in knowledge and self-efficacy on participation in ECHO clinics and perceived utility of the clinics. Seven HCPs (physicians [n = 2], nurses [n = 5]) participated in two focus groups. Four themes emerged: knowledge and skills development and dissemination; protected time; areas for improvement; and the future of ECHO. CONCLUSIONS: Telementoring clinics for HCP education and training in pain assessment and management in advanced and end-stage dementia demonstrate a positive impact on knowledge and self-efficacy of HCPs and highlight the value of a cross-specialty network of practice which spans across disciplines/HCP types, care settings and geographical areas. Further development of ECHO services in this and in other clinical areas, shows significant potential to support delivery of high-quality care to complex patient populations.

'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.

BACKGROUND: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. AIM: To explore physicians' experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. DESIGN: Qualitative, semi-structured interview study exploring barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. SETTING/PARTICIPANTS: A total of 23 physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care ( n = 9), psychiatry ( n = 7) and hospice care ( n = 7). RESULTS: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialities. Cross-speciality mentoring and the creation of knowledge networks were believed to improve pain management in this patient population. CONCLUSION: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients' families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.

Exploring healthcare assistants' role and experience in pain assessment and management for people with advanced dementia towards the end of life: a qualitative study.

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.

Nurses' experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study.

AIMS AND OBJECTIVES: To explore hospice, acute care and nursing home nurses' experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support. BACKGROUND: Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care. DESIGN: A qualitative study using semi-structured interviews and thematic analysis to examine data. METHODS: Twenty-four registered nurses caring for people dying with advanced dementia were recruited from 10 nursing homes, three hospices and two acute hospitals across a region of the UK. Interviews were conducted between June 2014-September 2015. RESULTS: Three core themes were identified: challenges administering analgesia, the nurse-physician relationship, and interactive learning and practice development. Patient-related challenges to pain management were universal across care settings; nurse- and organisation-related barriers differed between settings. A need for interactive learning and practice development, particularly in pharmacology, was identified. CONCLUSIONS: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required. RELEVANCE TO CLINICAL PRACTICE: Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology.