| 1. |
- Klarare, Anna, et al.
(författare)
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Leadership in specialist palliative home care teams : A qualitative study
- 2020
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Ingår i: Journal of Nursing Management. - : Hindawi Limited. - 0966-0429 .- 1365-2834. ; 28:1, s. 102-111
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Tidskriftsartikel (refereegranskat)abstract
- AimThe aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.BackgroundFor 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.MethodsQualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.ResultsTeam 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.ConclusionTeam 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 ManagementTeam 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.
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| 2. |
- Lind, Susanne, 1962-
(författare)
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Nationellt vårdprogram för palliativ vård 2012-2014
- 2012
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Ingår i: Omsorg. - Bergen : Fagbokforlaget. - 0800-7489. ; :2, s. 67-70
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- 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.
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| 3. |
- Lind, Susanne, 1962-, et al.
(författare)
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Quality indicators for palliative and end of life care : a review of Swedish policy documents
- 2013
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 3:2, s. 174-180
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Lind, Susanne, 1962-, et al.
(författare)
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Quality indicators for palliative and end of life care : a review of Swedish policy documents
- 2013
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 3:2, s. 174-180
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- Lind, Susanne, 1962-, et al.
(författare)
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Registered nurses’ experiences of caring for patients in hospitals transitioning from curative to palliative care : A qualitative study
- 2022
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Ingår i: Nursing and Health Sciences. - : Wiley. - 1441-0745 .- 1442-2018. ; 24:4, s. 820-827
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 6. |
- Norinder, Maria, et al.
(författare)
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Higher levels of unmet support needs in spouses are associated with poorer quality of life - a descriptive cross-sectional study in the context of palliative home care
- 2021
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Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundFamily 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.MethodsA 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.ResultsHigher 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.ConclusionWith 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.
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| 7. |
- Norinder, Maria, et al.
(författare)
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Närstående med ej tillgodosedda behov av stöd har sämre livskvalitet : En studie inom specialiserad palliativhemsjukvård (nr 48)
- 2022
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 8. |
- Pusa, Susanna, 1982-, et al.
(författare)
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Social processes in academic-community partnership in health care : A grounded theory study
- 2021
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Ingår i: BMC Nursing. - : Springer Science and Business Media LLC. - 1472-6955. ; 20
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
- Steindal, Simen A, et al.
(författare)
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Advantages and Challenges in Using Telehealth for Home-Based Palliative Care : Protocol for a Systematic Mixed Studies Review
- 2021
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Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 10:5
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Forskningsöversikt (refereegranskat)abstract
- 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.
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| 10. |
- Steindal, Simen A., et al.
(författare)
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Patients’ Experiences of Telehealth in Palliative Home Care : Scoping Review
- 2020
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 22:5, s. 1-11
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Forskningsöversikt (refereegranskat)abstract
- 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.
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