BACKGROUND: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.

METHODS: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.

RESULTS: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.

CONCLUSIONS: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.

AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.

BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs.

METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.

RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities.

CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size.

IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

Syftet med denna studie var att beskriva seniora mammors upplevelse av att förlora ett vuxet barn i samband med cancersjukdom. Fem mammor intervjuades om deras upplevelse av sjukdomstiden och tiden efter dödsfallet. Barnens ålder vid dödsfallen varierade mellan 31 och 48 år. En explorativ och beskrivande analysmetod, med inspiration från Glaser och Strauss grounded theory, har använts. Kärnkategori som framträdde ur materialet var en oplanerad tidsresa, både bakåt och framåt i tiden, mot ett främmande mål med ett behov av ressällskap och guide. Tanken att hamna i en situation där ens vuxna barn drabbas av livshotande sjukdom och därefter dör fanns inte hos dessa mammor. Under sjukdomstiden återvände både mammor och barn till ett förhållningssätt med en vårdande mamma. I vissa fall uppstod en konflikt när barnet inte ville ta emot omvårdnaden. Efter dödsfallet befinner sig mamman i en helt ny situation som är svår att hantera emotionellt och praktiskt. Den förväntade framtiden med exempelvis barnbarn finns inte kvar och nya mål i livet måste ta form. Under resans gång är det viktigt för mamman att få stöd både inom familjen och från andra närstående. Vårdpersonalen har en viktig roll för att informera och stödja mamman.

Ytterligare forskning behövs, både med mammor och pappor, för att kunna förstå deras situation i olika kontexter och därmed ge möjlighet för vårdpersonal att på bästa sätt ta hand om dessa föräldrar.

Background and aim: Quality improvement is continuously ongoing at different levels in our healthcare system. In Sweden, as in other countries, guidelines are important for quality improvement in healthcare, since they summarize the best available evidence. Improved living conditions and enhanced treatments for a variety of diseases have resulted in increased longevity and the need for palliative care has therefore also increased. A high proportion of deaths occur in acute care settings, where the care has been described as inadequate for dying patients. In 2013, the National Board of Health and Welfare published A National knowledgebased guidance for good palliative care in end-of-life care and just prior to this in 2012, the Regional Cancer Centre published the National clinical practice guideline for palliative care. The overarching aim of this thesis was to study implementation of knowledge-based palliative care in acute care settings.

Methods and results of the studies: The first and second studies covered aspects that were to be taken into account for the implementation of the documents described above. In study I, national policy documents in Sweden were reviewed for quality indicators relevant to palliative care and end-of-life care. In study II, perceptions regarding national palliative care guidelines were investigated and obstacles to and opportunities for implementing these guidelines in acute care hospitals were identified through interviews with local politicians, chief medical officers and healthcare professionals. The results showed scarce knowledge of the two documents at all levels of the healthcare organisation. Palliative care was primarily described as end-of- life care. The environment and culture in hospitals, with heavy workload, poor communication and poor teamwork, were described as obstacles for implementation. However, staff emphasised a need for training and support in palliative care through theoretical knowledge and mentoring to develop clinical skills. An implementation strategy for the use of the Integrated Palliative care Outcome Scale (IPOS) was developed. The strategy included information, training and facilitation to support the use of the scale. The implementation was performed at three acute care settings and, to gain a broader understanding of the strategy, it was also tested at a palliative care unit. The evaluation of the strategy, presented in study III and IV, was conducted through multiple methods. The findings showed varying prevalence of completed IPOS, indicating shortcomings in implementation.

Conclusion: The awareness of the two documents on palliative care varied at all levels in the healthcare organisation, being predominantly low among healthcare professionals in acute care settings. The feasibility of the performed implementation strategy was considered questionable and the components need to be further explored to enhance the impact of implementation and thereby improve the use of IPOS in acute care settings.

I En nationell cancerstrategi (1) beskrivs utarbetandet av ett nationellt vårdprogram för palliativ vård som särskilt angeläget. En multiprofessionell/multidisciplinär nationell vårdprogramgrupp med drygt 70 personer har medverkat. Arbetet har utförts i samarbete med Svenska Palliativregistret, Socialstyrelsen och med ekonomiskt stöd från Sveriges Kommuner och Landsting (SKL). Det Nationella vårdprogrammet för palliativ vård har utarbetats för att ge ökad kunskap och är ett sammanhållet dokument för all palliativ vård oberoende av diagnos, ålder, etnicitet, bakgrund eller bostadsort.  Det fokuserar på palliativ vård i livets slutskede men är till stora delar giltigt för all palliativ vård. Innehållet beskriver bl.a. värdegrund, etiska principer, kvalitetsarbetet, omvårdnad och symtomlindring. Förhoppningen är att vårdprogrammet medverkar till att alla som vårdas i livets slutskede ska få en kompetent, säker och ändamålsenlig palliativ vård. 

Background All patients with palliative and end of life care needs should be guaranteed equal and safe treatment and care, regardless of their disease or site of care. The inclusion of quality indicators in national guidelines and other guiding documents supports quality assurance and improvement in provision of care. The aim of this paper was to review existing quality indicators in national Swedish policy documents relevant to palliative and end of life care.

Methods We reviewed existing guidelines for diseases expected to require palliative care issued by the National Board of Health and Welfare, existing regional clinical practice guidelines and the annual report of the Swedish Register of Palliative Care (SRPC) up until 2010.

Results We found 11 quality indicators pertinent to palliative and end of life care in the guidelines for cancer diseases and ‘The care and nursing of the elderly’. The indicators included assessment and treatment of pain, communication with the patient and the family, documentation in the patient record and registration in the SRPC. In the national guidelines for cardiology, pulmonary diseases, stroke, diabetes and dementia, there were no indicators relevant for palliative or end of life care.

Conclusions In the existing Swedish national guidelines for many different diseases, there is still a great need to define clinically relevant and feasible outcome measures of quality of palliative and end of life care.

Aim and objectives The aim of this study was two-fold: to illuminate registered nurses’ experiences of palliative care and of caring for patients transitioning from curative to palliative care in hospitals.

Design A qualitative descriptive design was used.

Methods Group interviews were conducted with eleven registered nurses in three different hospital settings. Content analysis was performed.

Results The results are presented in four themes: Understanding palliativecare in a hospital setting; Involving, supporting and caring for patients and families; Striving for consensus and common goals of care; and Struggling with the hospital environment.The registered nurses described struggling with the interpretation of palliative care and with how to transfer it into clinical practice in their specific care settings. Teamwork and collaboration was challenging, and goals of care incongruent within the team.

Conclusions Further implementation of a palliative care approach, with core components symptom relief, teamwork, communication and relationship, and family support, is crucial to improve both patient care and the conditions enabling registered nurses to provide good care for the patients and their families in hospital settings.

OBJECTIVE: Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings.

METHOD: A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals. Result Factors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers' involvement in the implementation differed between the units. Significance of the results The feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.

In high-income countries a large proportion of all deaths occur in hospitals. A common way to translate knowledge into clinical practice is developing guidelines for different levels of health care organisations. During 2012, national clinical guidelines for palliative care were published in Sweden. Later, guidance for palliative care was issued by the National Board of Health and Welfare. The aim of this study was two-fold: to investigate perceptions regarding these guidelines and identify obstacles and opportunities for implementation of them in acute care hospitals. Interviews were conducted with local politicians, chief medical officers and health professionals at acute care hospitals. The Consolidated Framework for Implementation Research was used in a directed content analysis approach. The results showed little knowledge of the two documents at all levels of the health care organisation. Palliative care was primarily described as end of life care and only few of the participants talked about the opportunity to integrate palliative care early in a disease trajectory. The environment and culture at hospitals, characterised by quick decisions and actions, were perceived as obstacles to implementation. Health professionals' expressed need for palliative care training is an opportunity for implementation of clinical guidelines. There is a need for further implementation of palliative care in hospitals. One option for further research is to evaluate implementation strategies tailored to acute care.

Objective: Implementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals' experiences of the use of IPOS in acute care settings.

Method: Data were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed.

Result: A total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals' participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: "IPOS acting as a facilitator" and "barriers to the use of IPOS." The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals' feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS.

Significance of results: We found an association between healthcare professionals' participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.

Bakgrund: Närstående uttrycker ofta att de saknar tillräcklig kunskap för att vårda och ge stöd till en familjemedlem med livshotande sjukdom. Många beskriver konsekvenser som sömnlöshet, ångest, depression, trötthet, ensamhet och nedsatt hälsa vilket gör att de löper risk för en försämrad livskvalitet.

Syfte: Att undersöka associationer mellan närståendes stödbehov och livskvalitet när deras partner vårdas i specialiserad palliativ hemsjukvård.

Metod: Denna beskrivande tvärsnittsstudie, som är ett internationellt samarbete, rekryterade 114 närstående till en partner med livshotande sjukdom, från två specialiserade hemsjukvårdsenheter i Sverige. Deltagarna besvarade en enkät med validerade instrument: The Carer Support Needs Assessment Tool (CSNAT) och The Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) och 43 närstående besvarade även en öppen fråga om deras situation som närstående. Svaren analyserades med beskrivande statistik, multipla linjära regressionsanalyser och kvalitativ innehållsanalys.

Resultat: Högre nivåer av ej tillgodosedda behov av stöd hos närstående var signifikant associerat med sämre livskvalitet. Det var tydligt att alla frågor som CSNAT innehåller, dvs stödbehov utifrån praktiska, emotionella, sociala och existentiella aspekter, var associerade med livskvalitet enligt QOLLTI-F. De statistiska sambanden stärktes av att närstående i den öppna frågan beskrev hur deras liv och livskvalitet påverkades av sjukdomens konsekvenser. Närstående rapporterade mest behov av att få veta vad de kunde förvänta sig av framtiden. Sämst livskvalitet rapporterades närstående i förhållande till patientens tillstånd, och deras egen fysiska och emotionella hälsa.

Betydelse: Livskvalitet och stöd till närstående är båda viktiga begrepp för palliativ vård. Fördjupad kunskap om närståendes situation och hur deras stödbehov kan påverka livskvalitet kan skapa möjlighet för framtida interventioner som främjar närståendes livskvalitet.

Background: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care.

Methods: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses.

Results: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health.

Conclusion: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed.

BACKGROUND: International and national guidelines state that palliative care should be offered to everyone who needs it. To promote the implementation of palliative care in nursing homes, a partnership collaboration was initiated with the goal of implementing high quality palliative care. The partnership consisted of three partner groups: a project group from a non-profit organisation providing health care, managers at the nursing homes and an academic partner. The aim was to explore the social processes within academic-community partnership in a collaboration project.

METHODS: Digital focus group discussions were conducted with 16 participants, representing all three partner groups. One individual digital interview was also carried out. A constructivist perspective of a grounded theory approach was used for data analysis.

RESULTS: The core category, partnership positioning, covers the social processes of the academic-community partnership in a collaboration project to implement and evaluate health-promoting interventions in clinical health care. The core category was found to have four categories: Pre-positioning, Co-positioning, Re-positioning and GoOn-positioning. The process of partnership positioning is conceptualised in a model.

CONCLUSIONS: Our findings indicate that a new partnership in an implementation project needs holistic, systemic thinking. To enhance implementation in a collaborative project involving different professionals and actors a plan is required to facilitate positioning activities. The process, the roles and the components need to be clearly defined and documented, and the management of a system requires knowledge of the interrelationships between all the components within the system. The development of a conceptual model of Partnership Positioning contributes to knowledge concerning the social dynamic processes which can be applied to support future academic-community collaboration and/or implementation projects.

TRIAL REGISTRATION: Not applicable. The present study has not been considered as a clinical trial.

BACKGROUND: Given the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth for home-based palliative care.

OBJECTIVE: The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients' use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients.

METHODS: This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data, and assess methodological quality. The data will then be analyzed using thematic synthesis.

RESULTS: We describe the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021.

CONCLUSIONS: Following the ethos of patient-centered palliative care, this systematic mixed studies review could lead to recommendations for practice and policy, enabling the development and implementation of telehealth applications and services that align with patients' preferences and needs at home.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/22626.

Background: Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.

Objective: The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.

Methods: A scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.

Results: The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.

Conclusions: The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.