Trygve Johannes Lereim Sævareid

• Hermansen, Karin Berg; Sævareid, Trygve Johannes Lereim; Pedersen, Reidar; Alnes, Rigmor Grete Einang; Brøderud, Linn & Romøren, Maria [Show all 7 contributors for this article] (2026). Healthcare professionals’ experiences of advance care planning conversations with frail older adults admitted to acute geriatric hospital units: a nested qualitative study. BMC Health Services Research. 26. doi: 10.1186/s12913-026-15112-x. Full text in Research Archive Show summary

  Background: Advance care planning can support frail older adults, their next of kin, and healthcare professionals by clarifying patients’ values and preferences and improving communication toward the end of life. Despite these benefits, advance care planning remains underutilized, particularly among frail older adults with complex needs. Limited research has explored healthcare professionals’ experiences with initiating it in acute geriatric settings. As part of a broader research project focused on implementing advance care planning for older adults admitted to acute geriatric hospital units, this study aimed to explore healthcare professionals’ experiences with initiating these conversations. Methods: A qualitative sub-study, nested within a cluster randomized controlled trial, was conducted with implementation teams and other healthcare professionals from the six geriatric units in the intervention arm. They had recently started engaging in advance care planning with frail, acutely ill older patients and their next of kin. Data were collected through four focus groups and four dyadic interviews, involving a total of 24 participants. The data was analysed by using reflexive thematic analysis. Results: Four themes developed as perceived benefits: (1) Amplifies the patients’ voice, (2) Improves communication with next of kin, (3) Influences treatment decisions and may avoid overtreatment (4) Contributes to meaningful work. Two themes developed as perceived challenges: (1) Uncertainty regarding the ACP documentation, (2) ACP conversations require dedicated time and focus. Conclusion: This study revealed that advance care planning conversations in acute geriatric hospital units can amplify patients’ voices and promote their participation in decision-making. Discussions about existential topics appear beneficial and rewarding for patients, next of kin and healthcare professionals, both for in-moment and future decisions. Time constraints may have led to missed opportunities to initiate ACP conversations with patients before the end of life, while documentation issues may have limited their impact on continuity of care. Trial registration https://ClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23.

• Hermansen, Karin Berg; Sævareid, Trygve Johannes Lereim; Pedersen, Reidar; Alnes, Rigmor Grete Einang; Brøderud, Linn & Romøren, Maria [Show all 7 contributors for this article] (2026). Ethical challenges in acute geriatric care and advance care planning: a nested qualitative study. European Geriatric Medicine. ISSN 1878-7649. p. 1–11. doi: 10.1007/s41999-026-01563-2. Full text in Research Archive Show summary

  Purpose Ethical challenges are common in geriatrics, and moral dilemmas and conflicting interests can arise in advance care planning (ACP). Respecting the wishes of frail, acutely ill older patients while acting in their best interests can be challenging. This study was nested within a cluster randomized controlled trial aimed at implementing ACP in acute geriatric hospital units. The aim of this study was to explore clinicians’ experiences of ethical challenges in geriatric units before and during this implementation project. Methods Eight semi-structured interviews—four focus groups and four dyadic interviews—were conducted with a total of twenty-four participants, including implementation teams and other clinicians from the six intervention units. These participants had engaged in ACP with frail, acutely ill older patients and, preferably, their next of kin. The data were analyzed using Braun and Clarke’s reflexive thematic analysis. Results Four themes were developed: (1) navigating prognostic uncertainty while sustaining hope, (2) providing information that enables understanding and participation, (3) managing family disagreements and emotional strain, and (4) preserving dignity towards the end of life. The findings indicate that ethical challenges were often mitigated rather than intensified through ACP conversations. Conclusion Ethical challenges in acute geriatric care arose when patient autonomy was limited by cognitive impairment, unclear preferences, or family disagreement. Earlier preparation of patients and next of kin through ACP could facilitate early identification of potential disagreements and provide a stronger foundation for dialogue in acute situations.

• Brøderud, Linn; Romøren, Maria; Hermansen, Karin Berg; Sævareid, Trygve Johannes Lereim; Thoresen, Lisbeth & Pedersen, Reidar (2025). Barriers and facilitators in implementing advance care planning for frail older patients acutely admitted to geriatric hospital units: a nested qualitative study. Frontiers in Health Services. 5. doi: 10.3389/frhs.2025.1646541. Full text in Research Archive Show summary

  Background: Appropriate communication with patients is increasingly crucial in a growing elderly population to prevent both over- and undertreatment. Advance care planning (ACP) is recognized as a valuable communication process for patients, their relatives and healthcare professionals that facilitates future care and medical decision-making. Despite its importance, the uptake remains low, particularly among frail, older patients in hospitals. Methods: This qualitative substudy is nested within a cluster randomized controlled trial. Data collection involved eight semi-structured interviews conducted in acute geriatric hospital units receiving our implementation support program, along with informal data from interactions with the units during the implementation process. The aim was to explore healthcare professionals' perspectives on the barriers and facilitators to ACP implementation and their experiences with the implementation support program. A semi-structured interview guide was used. The data was analyzed using content analysis. Results: Factors influencing ACP implementation were identified at three levels: a) the organizational level, b) the national level, and c) the clinical level. Participants recognized the critical role of timing, context, and patients' capacity. However, there was meaningful opportunities for ACP conversations in acute geriatric units. Overall, the experiences underscored the complex interplay of individual motivation and interest, organizational support, prioritization, available time and resources, and systemic factors that influence the integration of ACP into clinical practice, as well as the fact that research can act as both a barrier and a facilitator in implementation efforts. Discussion: This study illustrates the significant challenges in implementing ACP in acute hospital care. Despite a generally positive perception of ACP, its implementation was hindered by barriers such as overwhelming workload, production-oriented healthcare, the biomedical model, and lack of prioritization. These factors creates a cycle where short-term demands overshadow preventive and patient-centered interventions, limiting their perceived and documented benefits. Breaking this cycle will likely require targeted investment in the implementation of complex interventions.

• Heggestad, Anne Kari Tolo; Gjermestad, Anita & Sævareid, Trygve Johannes Lereim (2025). Betydningen av etikkrefleksjon for samarbeidet mellom ansatte og pårørende i botilbud til personer med utviklingshemming. Nordisk välfärdsforskning | Nordic Welfare Research. 11(1), p. 1–14. doi: 10.18261/nwr.11.1.2. Full text in Research Archive Show summary

  Voksne personer med utviklingshemming leier eller eier ofte egen bolig, men vil samtidig være avhengig av støtte fra både profesjonelle og pårørende. I samarbeidet mellom pårørende og profesjonelle kan det oppstå etiske utfordringer. For å bedre samarbeidet med pårørende ble det i en større norsk kommune startet opp refleksjonsgrupper der ansatte og pårørende til personer med utviklingshemming deltok. I etterkant av dette prosjektet ble det gjennomført et forskningsprosjekt der hensikten var å avdekke etiske utfordringer ansatte og pårørende opplever i samarbeidet om omsorgen for personer med utviklingshemming. Videre har hensikten vært å synliggjøre hvilken betydning etikkrefleksjon kan ha for samarbeidet. Det ble gjennomført fokusgruppeintervjuer med ansatte og dybdeintervjuer med pårørende. Intervjuene ble så analysert tematisk. Studien viste at utfordringene som oppsto, handlet om en spenning mellom familiære verdier og institusjonelle verdier. Gjennom etikkrefleksjon opplevde både ansatte og pårørende at de fikk en større forståelse av hverandres perspektiver, som igjen bidro til å minske spenningen. Funnene blir diskutert i lys av ulike omsorgslogikker og en diskursetisk tilnærming.

• Westbye, Siri Færden; Romøren, Maria; Ahmed, Marc; Hermansen, Karin Berg; Brøderud, Linn & Wahl, Astrid Klopstad [Show all 9 contributors for this article] (2025). Measuring the level of implementation of advance care planning – a fidelity-based cross-sectional study. Frontiers in Health Services. 5. doi: 10.3389/frhs.2025.1629242. Full text in Research Archive Show summary

  Introduction Advance care planning (ACP) is supported by evidence, legal and ethical principles and ACP guidelines. However, this complex intervention is often poorly implemented. This article presents a novel fidelity scale to measure the implementation of ACP and reports the preliminary testing of the scale at baseline in a larger trial aiming at implementing ACP in hospitals in Norway. Method The research design conducted was a cross-sectional measurement of fidelity to guidelines, conducted in 12 geriatric hospital units in Norway recruited using purposive sampling. The sample size for the larger trial was determined, based on prior research, to be at least four clusters in each arm. Due to the possibility of unit drop-out during the project period and to secure sufficient power, we included six units in the intervention arm and six in the control arm. For the baseline measurement we developed an ACP fidelity scale including three subscales: implementation, quality and penetration rate, each with 4–11 items. We ensured face and content validity through input from relevant theories and research, experts and users. Items were scored from 1 to 5, with 1 indicating no implementation and 5 indicating full implementation. Data was analyzed using descriptive statistics, Cronbach's alpha and calculation of interrater reliability for the scales. Further psychometric testing could not be conducted at this stage due to the lack of variance in the items. Results The mean score for the implementation subscale was 1.213, with a median of 1, a standard deviation (SD) of 0.08, a standard error (SE) of 0.01, a variance of 0.01, and a range of 0.28 (minimum 1.14 and maximum 1.42). The scores in the subscale showed that none of the units had recommended implementation measures. Only a few professionals reported they had heard of ACP, but not the whole staff. Cronbach's alpha could not be estimated due to the lack of variation in the scores for this subscale. On the quality subscale, which assesses whether ACP is practiced in accordance with practice guidelines, the mean score was 1.11, the median was 1, the SD was 0.48, the SE was 0.06, the variance was 0.13, and the range was 1.27 (minimum 1 and maximum 2.27). The scores in this subscale showed that ACP was practiced sporadically by the palliative care team in only one unit, while the other staff did not engage in this practice at all. Cronbach's alpha for the subscale on quality was 0.887 (11 items) showing an acceptable internal consistency. For the penetration rate subscale, which measures how widespread the practice is, the mean score was 1.08, the median was 1, the SD was 0.28, the SE was 0.05, the variance was 0.08, and the range was from a minimum of 1 to a maximum of 2. Among the total number of admitted geriatric patients, only 10% had received ACP in only one of the 12 units. Also, for this subscale, the model for Cronbach's alpha could not be applied. There was little variation in the low measurements, thus the interrater reliability was high, reflected in the Intraclass Correlation Coefficient (ICC). The ICC was 0,916 [−0,721,0.976] for the implementation subscale, 1.00 for the quality subscale, and 1.00 for the penetration rate subscale. Conclusion Our findings indicate very low implementation of ACP in acute geriatric hospital units in Norway. The newly developed ACP fidelity scale has the potential to serve as an important tool for improving the quality of healthcare services for older patients. However, more data is needed to validate the psychometric properties of the scale. Our study should be considered as a preliminary study, and the scale should be used with caution as long as its properties are not well validated. Clinical Trial Registration ClinicalTrials.gov , NCT05681585.

• Hermansen, Karin Berg; Alnes, Rigmor Grete Einang; Sævareid, Trygve Johannes Lereim; Pedersen, Reidar; Westbye, Siri Færden & Romøren, Maria [Show all 7 contributors for this article] (2025). Raising awareness and preparation for what may come: next of kin experiences of advance care planning with frail, home-dwelling older adults in geriatric units. BMC Health Services Research. 25(1). doi: 10.1186/s12913-025-12609-9. Full text in Research Archive Show summary

  Background Acutely ill and frail older adults and their next of kin are often poorly involved in planning of decisions regarding treatment and care during the final phase of life. Although advance care planning is a well-documented tool to strengthen patient autonomy and involve next of kin, it remains underused in hospital settings. We present a qualitative sub-study embedded in a cluster-randomized controlled trial, whose purpose was to implement advance care planning in Norwegian geriatric units. Frail, home dwelling older adults acutely admitted to geriatric hospital units were invited to participate in advance care planning together with their next of kin. The aim of this study was to explore next of kin experiences of advance care planning. Methods The study has a qualitative design, based on individual semi-structured interviews with 13 next of kin. A purposive sampling was used to select next of kin who had recently participated in advance care planning from five geriatric units in the intervention arm. The analysis was conducted using reflexive thematic analysis by Braun and Clarke. Results Four themes were developed from the analysis; (1) Being informed and involved through open communication; (2) Getting prepared for what’s to come; (3) The importance of the next of kin role in providing support and facilitation; (4) The need for documentation and collaboration across service levels. Conclusion Advance care planning appears to provide a sense of security among next of kin by addressing their information needs regarding the patient’s prognosis, encouraging discussions on possible courses of action, and clarifying the patient’s end-of-life preferences. Next of kin played a crucial role in supporting the patient’s autonomy, and they considered the hospital stay as an ideal time for advance care planning. Increased awareness of their role as next of kin seems to enhance agreement and trust when confronting challenging situations and existential questions. Trial registration ClinicalTrials.gov Identifier NTCT05681585. Registered 03.01.23.

• Kuhumba, Shija Kevin; Sævareid, Trygve Johannes Lereim; Mhando, Nandera Ernest & Molewijk, Albert Christiaan (2025). Responding to Moral Challenges in Clinical Practice: A Qualitative Assessment of Clinical Ethics Support Needs at Three Tanzanian Hospitals. HEC Forum. ISSN 0956-2737. 38, p. 1–23. doi: 10.1007/s10730-025-09547-8. Full text in Research Archive
• Romøren, Maria; Hermansen, Karin Berg; Sævareid, Trygve Johannes Lereim; Brøderud, Linn Benita; Westbye, Siri Færden & Wahl, Astrid Klopstad [Show all 10 contributors for this article] (2024). Implementation of advance care planning in the routine care for acutely admitted patients in geriatric units: protocol for a cluster randomized controlled trial. BMC Health Services Research. 24. doi: 10.1186/s12913-024-10666-0. Full text in Research Archive Show summary

  Background Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. Methods This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient’s preferences for information and involvement and the clinician’s perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis. Discussion The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science.

• Kuhumba, Shija Kevin; Molewijk, Albert Christiaan; Solbakk, Jan Helge; Mhando, Nandera Ernest & Sævareid, Trygve Johannes Lereim (2024). Moral challenges and understanding of clinical ethics in Tanzanian hospitals: Perspectives of healthcare professionals. Developing World Bioethics. ISSN 1471-8731. doi: 10.1111/dewb.12467. Full text in Research Archive Show summary

  Healthcare professionals encounter many moral challenges in their daily clinical practice. However, there have been few studies on the subject matter in Tanzania. This study aims to provide an account of moral challenges faced by healthcare professionals in Tanzanian hospitals, their understanding of clinical ethics, and the ethics education they have received. Many participants reported receiving some kind of ethics training through formal education and on-the-job training. Some participants understood ethics in healthcare settings as adherence to established laws, regulations, guidelines, procedures, norms, and rules essential in clinical practice. Analysis of the data identified four themes of moral challenges. These challenges are related to 1) decision-making and communication in clinical practice, 2) scarcity of medical resources and prioritization in clinical practice, 3) withdrawal of curative treatment, and 4) conflicts between professional judgment, religious convictions and adherence to alternative

• Ihle-Hansen, Hege Beate; Pedersen, Reidar; Westbye, Siri Færden; Sævareid, Trygve Johannes Lereim; Brøderud, Linn Benita & Larsen, Marie Hamilton [Show all 9 contributors for this article] (2024). Patient preferences in geriatric wards, a survey of health care professionals’ practice, experience and attitudes. European Geriatric Medicine. ISSN 1878-7649. 15, p. 153–158. doi: 10.1007/s41999-023-00922-7. Full text in Research Archive Show summary

  Purpose We aimed to identify whether health care professionals (HCP) examine their patient and next-of-kin preferences, and to study whether medical decisions follow these preferences. Method A cross-sectional web-based survey was conducted with multidisciplinary HCP from 12 geriatric wards in the South-Eastern Norway Regional Health Authority. Results Of the 289 HCPs responding (response rate 61%), mean age 37.8 years (SD 11.3), 235 (81.3%) women, 12.4 (SD 9.6) years of experience and 67 (23.2%) medical doctors, only half report clarifying patients’ preferences. The majority reported that they did not inform, involve and treat in line with such preferences. However, 53% believe that HCP, patients and next-of-kin should make clinical decisions together. Discussion Our findings indicate a lack of engagement in conversation and inclusion of patient preferences when providing health interventions in geriatric wards. Measures for change of culture are needed.

• Ihle-Hansen, Hege Beate; Ihle-Hansen, Håkon; Rostoft, Siri; Munkhaugen, John; Westbye, Siri Færden & Romøren, Maria [Show all 13 contributors for this article] (2024). Forhåndssamtaler om siste livsfase. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. 144(13). doi: 10.4045/tidsskr.24.0105. Full text in Research Archive Show summary

  Bakgrunn: Det foreligger nye nasjonale faglige råd om forhåndssamtaler om siste livsfase. Trygghet i kommunikasjon er viktig for implementering. Formålet med denne studien var å kartlegge helsepersonells selvopplevde trygghet i kommunikasjon om fremtidig helsehjelp og pasientens ønsker i livets sluttfase. Materiale og metode: Helsepersonell ved tolv geriatriske enheter i Helse Sør-Øst besvarte en nettbasert spørreundersøkelse høsten 2022. De fire svaralternativene for selvrapportert trygghet – «lite trygg», «nokså trygg», «meget trygg» og «svært trygg» – er slått sammen til to kategorier: «begrenset trygghet» («lite trygg» og «nokså trygg») og «høy trygghet» («meget trygg» og «svært trygg»). Resultater: Vi fikk svar fra 289 av 470 (61,5 %) av de inviterte, med en gjennomsnittsalder på 37,8 ± 11,3 år, hvorav 217 av 289 (75 %) hadde mer enn fem års yrkeserfaring. Blant legene rapporterte 15 av 67 (22 %) begrenset trygghet i kommunikasjon om «fremtidig forverring av pasientens helsetilstand», 20 av 67 (30 %) om «livsforlengende behandling» og 13 av 67 (19 %) om «ønsker for livets sluttfase». For annet helsepersonell var tilsvarende responser 119 av 222 (54 %), 140 av 222 (63 %) og 109 av 222 (49 %). Fortolkning: Egenvurdert trygghet i kommunikasjon om fremtidig forverring, fremtidig helsehjelp og pasientens egne ønsker i livets sluttfase varierer, og er begrenset blant mye helsepersonell i geriatriske enheter. Det synes nødvendig med tiltak for å øke tryggheten i kommunikasjon og implementering av forhåndssamtaler i helsetjenesten. Hovedfunn: Blant leger oppga 20 av 67 (30 %) begrenset trygghet i kommunikasjon om «fremtidig helsehjelp», mens av annet helsepersonell svarte 140 av 222 (63 %) det samme. For kommunikasjon om «ønsker for livets siste fase» fant vi at 13 av 67 (19 %) av legene og 109 av 222 (49 %) av annet helsepersonell oppga begrenset trygghet.

• Sævareid, Trygve Johannes Lereim; Aasmul, Irene & Hjorth, Nina Elisabeth (2023). Implementation of Advance Care Planning in Norway. Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen. ISSN 1865-9217. 180, p. 163–167. doi: 10.1016/j.zefq.2023.05.017. Full text in Research Archive Show summary

  Advance Care Planning has a relatively short history in the Norwegian health care services. This article gives an overview of advance care planning research and its implementation in the health care services in Norway. Advance care planning has received increased attention from policymakers and the health care services. Research projects have been performed, and several are on-going. Implementation has largely treated advance care planning as a complex intervention, with a whole-system approach that puts emphasis on the conversation and patient activation. Advance directives have a peripheral role in this context.

• Sævareid, Trygve Johannes Lereim; Pedersen, Reidar & Thoresen, Lisbeth (2021). Etiske dilemmaer knyttet til avstand og nærhet som følge av covid-19. Omsorg: Nordisk tidsskrift for Palliativ Medisin. ISSN 0800-7489. 38(1), p. 32–36. Full text in Research Archive
• Sævareid, Trygve Johannes Lereim; Pedersen, Reidar & Magelssen, Morten (2021). Positive attitudes to advance care planning – a Norwegian general population survey. BMC Health Services Research. 21. doi: 10.1186/s12913-021-06773-x. Full text in Research Archive Show summary

  Background Authorities recommend advance care planning and public acceptance of it is a prerequisite for widespread implementation. Therefore, we did the first study of the Norwegian public with an aim of getting knowledge on their attitudes to issues related to advance care planning. Methods An electronic survey to a nationally representative web panel of Norwegian adults. Results From 1035 complete responses (response rate 40.7%), we found that more than nine out of ten of the general public wanted to participate in advance care planning, believed it to be useful for many, and wanted to make important healthcare decisions themselves. Almost nine out of ten wanted to be accompanied by next of kin during advance care planning. Most (69%) wanted health care personnel to initiate advance care planning and preferred it to be timed to serious illness with limited lifetime (68%). Only about 9% stated that health care personnel should have the final say in healthcare decisions in serious illness. Conclusions Developing and implementing advance care planning as a public health initiative seems warranted based on the results of this study. Patient perspectives should be promoted in decision-making processes. Nevertheless, training of health care personnel should emphasise voluntariness and an individual approach to initiating, timing and conducting advance care planning because of individual variations.

• Sævareid, Trygve Johannes Lereim (2020). Forhåndssamtaler for sykehjemsbeboere. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. doi: 10.4045/tidsskr.20.0227. Full text in Research Archive
• Sævareid, Trygve Johannes Lereim; Pedersen, Reidar & Thoresen, Lisbeth (2020). Nursing home residents with cognitive impairment can participate in advance care planning: A qualitative study. Journal of Advanced Nursing. ISSN 0309-2402. 77(2), p. 879–888. doi: 10.1111/jan.14661. Full text in Research Archive Show summary

  Aims: To describe advance care planning in nursing homes when residents with cognitive impairment and/or their next of kin participated and identify associated challenges. Design: A qualitative study of nine advance care planning conversations in four Norwegian nursing home wards. During the implementation of advance care planning, we purposively sampled residents with cognitive impairment, their next of kin and healthcare personnel. The implementation followed a “whole‐ward” approach aimed at involving the whole ward in fostering an inclusive, holistic advance care planning discussion. Involving as many residents as possible, preferably together with their next of kin, were central. Methods: From observed and audio‐recorded advance care planning conversations that took place from November 2015 to June 2016, we conducted a thematic analysis of the transcripts and field notes. Reporting adhered to the COREQ guidelines. Results: Residents actively relayed their preferences regarding healthcare and end‐of‐life issues, despite the cognitive impairment. Next of kin provided constructive support and conversations were largely resident‐focused. However, involving residents was also challenging, findings included: residents’ preferences were often vague, relevant medical information from healthcare personnel lacked and the next of kin were sometimes unaware of the resident's previously held preferences. Moreover, residents tended to focus more on the past and present than the future end‐of‐life care. Conclusions: Residents with cognitive impairment can participate actively and meaningfully in advance care planning, if the healthcare personnel actively listens. However, several challenges can arise. Supported decision‐making can improve communication and resident involvement, reinforcing a relational understanding of autonomy. Impact: Persons with cognitive impairment should be invited to participate in advance care planning. Their participation may make its benefits and more person‐centred care attainable to persons that are often not involved. Successful involvement of persons with cognitive impairment in advance care planning may rely on robust implementation.

• Sævareid, Trygve Johannes Lereim & Pedersen, Reidar (2020). Forhåndssamtaler - et forsøk på å se enkeltmennesket. Omsorg: Nordisk tidsskrift for Palliativ Medisin. ISSN 0800-7489. 37(2), p. 5–9. Full text in Research Archive
• Sævareid, Trygve Johannes Lereim; Thoresen, Lisbeth; Gjerberg, Elisabeth; Lillemoen, Lillian & Pedersen, Reidar (2019). Improved patient participation through advance care planning in nursing homes—A cluster randomized clinical trial. Patient Education and Counseling. ISSN 0738-3991. 102, p. 2183–2191. doi: 10.1016/j.pec.2019.06.001. Full text in Research Archive Show summary

  Objective: To improve patient participation in advance care planning in nursing homes where most patients have some degree of cognitive impairment. Methods: This was a pair-matched cluster randomized clinical trial with eight wards in eight Norwegian nursing homes. We randomized one ward from each of the matched pairs to the intervention group. We included all patients above 70. The primary outcome was prevalence of documented patient participation in end-of-life treatment conversations. The intervention included implementation support using a whole-ward approach where regular staff perform advance care planning and invite all patients and next of kin to participate. Results: In intervention group wards the patients participated more often in end-of-life treatment conversations (p < 0.001). Moreover, the patient’s preferences, hopes AND worries (p = 0,006) were more often documented, and concordance between provided TREATMENT and patient preferences (p = 0,037) and next of kin participation in advance care planning with the patient (p = 0,056) increased. Conclusion: Improved patient participation – also when cognitively impaired - is achievable through advance care planning in nursing homes using a whole-ward approach. Practice implications: Patients with cognitive impairment should be included in advance care planning supported by next of kin. A whole-ward approach may be used to implement advance care planning.

• Sævareid, Trygve Johannes Lereim; Førde, Reidun; Thoresen, Lisbeth; Lillemoen, Lillian & Pedersen, Reidar (2019). Significance of advance care planning in nursing homes: views from patients with cognitive impairment, their next of kin, health personnel, and managers. Clinical Interventions in Aging. ISSN 1176-9092. 14, p. 997–1005. doi: 10.2147/CIA.S203298. Full text in Research Archive Show summary

  Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance. Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP. Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources. Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.

• Sævareid, Trygve Johannes Lereim; Lillemoen, Lillian; Thoresen, Lisbeth; Førde, Reidun; Gjerberg, Elisabeth & Pedersen, Reidar (2018). Implementing advance care planning in nursing homes - study protocol of a cluster-randomized clinical trial. BMC Geriatrics. 18(1). doi: 10.1186/s12877-018-0869-1. Full text in Research Archive Show summary

  Background Close to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies. Methods/design This study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or “clusters” were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group. Discussion This project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.

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