BackgroundNursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and... Show moreBackgroundNursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff.ObjectiveThis review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver.DesignScoping review.MethodsA literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review.ResultsNine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills.ConclusionsThis review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people’s readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other. Show less
Machado, F.V.C.; Meys, R.; Delbressine, J.M.; Vaes, A.W.; Goertz, Y.M.J.; Herck, M. van; ... ; Spruit, M.A. 2021
Background An increasing number of subjects are recovering from COVID-19, raising the need for tools to adequately assess the course of the disease and its impact on functional status. We aimed to... Show moreBackground An increasing number of subjects are recovering from COVID-19, raising the need for tools to adequately assess the course of the disease and its impact on functional status. We aimed to assess the construct validity of the Post-COVID-19 Functional Status (PCFS) Scale among adult subjects with confirmed and presumed COVID-19. Methods Adult subjects with confirmed and presumed COVID-19, who were members of an online panel and two Facebook groups for subjects with COVID-19 with persistent symptoms, completed an online survey after the onset of infection-related symptoms. The number and intensity of symptoms were evaluated with the Utrecht Symptom Diary, health-related quality of life (HrQoL) with the 5-level EQ-5D questionnaire, impairment in work and activities with the Work Productivity and Activity Impairment questionnaire and functional status with the PCFS Scale. Results 1939 subjects were included in the analyses (85% women, 95% non-hospitalized during infection) about 3 months after the onset of infection-related symptoms. Subjects classified as experiencing 'slight', 'moderate' and 'severe' functional limitations presented a gradual increase in the number/intensity of symptoms, reduction of HrQoL and impairment in work and usual activities. No differences were found regarding the number and intensity of symptoms, HrQoL and impairment in work and usual activities between subjects classified as experiencing 'negligible' and 'no' functional limitations. We found weak-to-strong statistical associations between functional status and all domains of HrQoL (r: 0.233-0.661). Notably, the strongest association found was with the 'usual activities' domain of the 5-level EQ-5D questionnaire. Conclusion We demonstrated the construct validity of the PCFS Scale in highly-symptomatic adult subjects with confirmed and presumed COVID-19, 3 months after the onset of symptoms. Show less
Vaes, A.W.; Goertz, Y.M.J.; Herck, M. van; Machado, F.V.C.; Meys, R.; Delbressine, J.M.; ... ; Spruit, M.A. 2021
Background: It remains unknown whether and to what extent members of online "long COVID" peer support groups remain symptomatic and limited over time. Therefore, we aimed to evaluate symptoms in... Show moreBackground: It remains unknown whether and to what extent members of online "long COVID" peer support groups remain symptomatic and limited over time. Therefore, we aimed to evaluate symptoms in members of online long COVID peer support groups up to 6 months after the onset of coronavirus disease 2019 (COVID-19)-related symptoms.Methods: Demographics, symptoms, health status, work productivity, functional status and health-related quality of life were assessed about 3 and 6 months after the onset of COVID-19-related symptoms in members of online long COVID peer support groups.Results: Data from 239 patients with a confirmed COVID-19 diagnosis (83% women; median (interquartile range) age 50 (39-56) years) were analysed. During the infection, a median (interquartile range) of 15 (11-18) symptoms was reported, which was significantly lower 3 and 6 months later: 6 (4-9) and 6 (3-8), respectively (p<0.05). From 3 to 6 months follow-up, the proportion of patients without symptoms increased from 1.3% to only 5.4% (p<0.001). Patients also reported a significantly improved work productivity (work absenteeism and presenteeism: 73% versus 52% and 66% versus 60%, respectively), self-reported good health (9.2% versus 16.7%), functional status (mean +/- SD Post-COVID-19 Functional Status scale: 2.4 +/- 0.9 versus 2.2 +/- 1.0) and health-related quality of life (all p<0.05).Conclusion: Although patients with confirmed COVID-19, who were all members of online long COVID peer support groups, reported significant improvements in work productivity, functional status and quality of life between 3 and 6 months follow-up, these data clearly highlight the long-term impact of COVID-19, as approximately 6 months after the onset of COVID-19-related symptoms a large proportion still experienced persistent symptoms, a moderate-to-poor health, moderate-to-severe functional limitations, considerable loss in work productivity, and/or an impaired quality of life. Action is needed to improve the management and healthcare of these patients. Show less
Broese, J.M.C.; Heij, A.H. de; Janssen, D.J.A.; Skora, J.A.; Kerstjens, H.A.M.; Chavannes, N.H.; ... ; Kleij, R.M.J.J. van der 2021
Background:Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for... Show moreBackground:Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for this patient group specifically.Aim:To describe the characteristics of palliative care interventions for patients with COPD and their informal caregivers and review the available evidence on effectiveness and implementation outcomes.Design:Systematic review and narrative synthesis (PROSPERO CRD42017079962).Data sources:Seven databases were searched for articles reporting on multi-component palliative care interventions for study populations containing > 30% patients with COPD. Quantitative as well as qualitative and mixed-method studies were included. Intervention characteristics, effect outcomes, implementation outcomes and barriers and facilitators for successful implementation were extracted and synthesized qualitatively.Results:Thirty-one articles reporting on twenty unique interventions were included. Only four interventions (20%) were evaluated in an adequately powered controlled trial. Most interventions comprised of longitudinal palliative care, including care coordination and comprehensive needs assessments. Results on effectiveness were mixed and inconclusive. The feasibility level varied and was context-dependent. Acceptability of the interventions was high; having someone to call for support and education about breathlessness were most valued characteristics. Most frequently named barriers were uncertainty about the timing of referral due to the unpredictable disease trajectory (referrers), time availability (providers) and accessibility (patients).Conclusion:Little high-quality evidence is yet available on the effectiveness and implementation of palliative care interventions for patients with COPD. There is a need for well-conducted effectiveness studies and adequate process evaluations using standardized methodologies to create higher-level evidence and inform successful implementation. Show less
