Background: Disparities in care for seriously ill African American (AA) elders exist because of gaps in knowledge regarding culturally sensitive physiological, psychological, social, and spiritual needs and preferences. Conceptual Framework: The foundation of culturally sensitive patient-centered PC is formed from social, spiritual, psychological and physical experiences of serious illness. Purpose: Aim 1 was to describe categories and patterns of psych-social-spiritual healing from the perspective of AA elders with serious illness. Aim 2 was to examine the NIH Clinical Center's psych-social-spiritual healing measure as a valid, culturally appropriate measure for this population. Methods: A purposive sample of 28 AA elders with serious illnesses and from the Jackson MS area participated in this study. Aim One used the qualitative method of narrative analysis. Aim Two used cognitive interviewing methodology, including verbal probing and think aloud techniques. Findings: Aim One: Prior experiences, I changed, and Across past, present experiences and future expectations were the three main of the thematic analysis. The thematic categories in prior experiences were: been through it...made me strong, I thought about…others, and went down little hills...got me down. The thematic categories in I changed were: I grew stronger, changed priorities, do things I never would have done, and quit doing. The thematic categories in Across past, present experiences and future expectations were: God did and will take care of me, close-knit relationships, and life is better. The most prevalent theme of God did and will take care of me was divided into subthemes of: God did, God will and developing faith. Aim Two: Of the fifty-three items on the Psychological-Social-Spiritual Healing instrument, thirty-seven items were retained, eight items revised, and eight items deleted. Conclusions: Aim one: The narratives were stories of remarkable strength. This strength was grounded in the participants' "faith" in God that helped the aging seriously ill AA elder "overcome things." Aim Two: Linguistic validity was enhanced with expert input from the seriously ill AA elders. Pragmatic validity, using both the research team and participants' input, improved the content validity. These findings provide evidence towards a more valid and culturally sensitive tool.

Abstract          Background: End of life is difficult to establish in patients with dementia and many patients die due to complications related to the disease. To document that care are palliative in this group of patients is not common among nurses and physicians. This may depend on that the palliative course is extended and not similar to the palliative course common among patients with cancer. Aim: To describe how the registered staff in nursing homes document the care of persons with dementia in a late palliative phase. Method: A retrospective record study with a deductive approach. Nursing (n = 50) and medical records (n = 50) for departed patients were reviewed using a review guide based on the Liverpool Care Pathway (LCP). Data were analyzed with a manifest content analysis.  The occurrence of documentation in the records was also counted. Results: Three categories were formulated from the analysis: Initial assessment, Coherent assessment and Follow-up. According to medical records the nurses and physicians knew that patients with dementia were dying, but the position on palliative care was not always decided. Nurses and physicians knew that patients with dementia were dying but they did not take a stand that the patient needed palliative care.  Mainly physical symptoms were documented and to a lesser degree psychological, social or existential/spirituality needs. Discussion: It was difficult to form a true picture of patients’ situation from out the documentation. Partly because all caring actions were not documented and the review guide was limited as all parts provided to give a holistic care was not represented. That relative had been provided information that the patient was palliative was accurately documented. Conclusion: The holistic care that patients with dementia need in a palliative phase is not elucidated in the documentation in nursing homes in spite of nurses and physicians knowledge of that the patient are dying.

Bakgrund: Palliativ vård betyder lindrande vård där döden ses som en normal och naturlig process. Det innebär att varken påskynda eller skjuta upp döden för patienten, samt att ge en god omvårdnad utifrån ett helhetsperspektiv. Omvårdnaden av patienter i livets slutskede på sjukhus kan vara påfrestande för sjuksköterskor. Syfte: Syftet med studien var att beskriva sjuksköterskors upplevelser av att vårda patienter i livets slutskede på sjukhus. Metod: Metoden som användes var en litteraturöversikt där tretton artiklar analyserades. Resultat: Resul-taten presenteras utifrån fyra kategorier; faktorer som bidrar till en god palliativ vård, faktorer som påverkar sjuksköterskan negativt, kommunikationen ett viktigt verktyg och när dödsfallet är ett faktum samt tretton underkategorier. Sjuksköterskor upplevde att när de bidragit till en värdig död hade de lyckats i sin omvårdnad. Delar av den palliativa vården kan upplevas som berikande för sjuksköterskor, men den innebär också stora påfrestningar. Påfrestningarna an-sågs kunna minskas med hjälp av mer tid, samt kunskap och utbildning inom palliativ vård. Konklusion: Sammanfattningsvis visade denna studie att sjuksköterskor har en viktig uppgift i samband med att vårda patienter livets slutskede, samt att många faktorer spelar in för att sjuksköterskor ska känna att de ger en god palliativ vård till patienter i livets slutskede. / Background: Palliative care means relieving care where death is seen as a normal and natural process. It means that either hurry up or postpone death for the patient, and to provide good health care from a holistic perspective. Nursing care of patients dying in hospital can be stressful for nurses. Purpose: The purpose with the study was to describe nurses experiences of the caring for dying patients in hospital. Method: The used method was an systematic lit-erature summary were thirteen articles has been analyzed. Result: The result is presented on the basis of four main category: factors that contribute to a good palliative care, factors that affect nurses negatively, communication a major instrument and when death is a fact, together with thirteen subcategories. Nurses felt that when they contribute to a dignified death, they had succeded in their care. Parts of the palliative care feels rewarding for the nurses, but it also involve great strains. The strain was considered to be reduced by using more time, knowledge and training in palliative care. Conclusion: The study concludes that nurses has an important role in the care for dying patients, and many factors is involved when they provide a good palliative care.

Statistik från år 2002 visade att 24,6 miljoner människor i världen lever med cancersjukdom. Sjuksköterskor möter många av dessa patienter i det dagliga omvårdnadsarbetet. En stor del av vårdarbetet är medicinskt inriktat men betydelsen av upplevd livskvalitet hos patienter med cancersjukdom har visat sig ha stor betydelse för både behandling och sjukdomsförlopp. Livskvalitet omfattar upplevelser och känslor inom individen. Att mäta upplevd livskvalitet kan vara svårt då det är en individuell upplevelse. Det är svårt att hitta ett generellt mätinstrument för livskvalitet därför kan det underlätta att mäta de omkringliggande faktorerna till livskvalitet. När det inte längre är möjligt att bota en cancersjukdom finns möjlighet till olika behandlingsalternativ för att lindra cancersjukdomens symtom, palliativ vård. Syftet med denna litteraturstudie var att belysa livskvaliteten hos patienter med cancersjukdom i palliativ vård. Litteraturstudien omfattar 13 vetenskapliga artiklar. Resultatet delades in i 5 olika kategorier med faktorer som påverkade livskvaliteten; fysiska faktorer, psykologiska faktorer, sociala faktorer, andliga faktorer samt omvårdnadsfaktorer. Resultatet speglade vikten av symtomkontroll såväl för patientens livskvalitet som för sjuksköterskans omvårdnad. Det är viktigt att sjuksköterskan uppfattar negativt upplevda symtom hos patienten tidigt för att kunna göra patienten delaktig i omvårdnaden och därigenom främja livskvaliteten. Det borde ägnas mer forskning åt patienter med cancersjukdom och deras upplevelse av livskvaliteten.

Palliativ vård innebär att ge vård till en svårt sjuk patient när sjukdomen inte längre går att bota. Omvårdnadspersonalen som arbetar med palliativ vård måste kunna se och fånga upp olika behov hos den svårt sjuke. Ett starkt engagemang och lyhördhet från omvårdnadspersonalen behövs i arbetet med palliativ vård. Att kunna se döden som en naturlig del av livet är en förutsättning för omvårdnadspersonalen att ha med sig i sin yrkesroll. Enligt den personal som intervjuats är kommunikation ett viktigt redskap i arbetet med palliativ vård för att kunna bemöta de svåra situationer som kan uppstå i arbetet. Syftet med vår studie var att ta reda på hur omvårdnadspersonalen upplevde det att arbeta inom palliativ vård. Metoden som använts har varit kvalitativ och sökningar har gjorts i databaser på Örebro universitet för att kunna förstå och bearbeta våra frågeställningar och därmed försöka uppfylla studiens syfte. I resultatet framkommer omvårdnadspersonalens uppfattning av att arbeta med palliativ vård var att det upplevdes som ett mycket meningsfullt och givande arbete. I studien belyser också omvårdnadspersonalen ett antal faktorer som är av vikt vid mötet med den svårt sjuke och som bidrar till att kunna uppnå en god och värdig död. / Palliative care involves providing care to a seriously ill patient when the disease is no longer curable. The nursing staff working in palliative care must be able to see and capture the needs of the seriously ill. A strong commitment and sensitivity of the nursing staff are needed in the work of palliative care. To view death as a natural part of life is a prerequisite for nursing staff and to carry in their professional role. According to the nursing staff, the ability to communicate verbal and also non - verbal is an important tool in the work of palliative care to enable responding to the difficult situations that may arise at work. The aim of our study was to find out how the nursing staffs experience of their work in palliative care. The method used was qualitative and searches have also been done in the databases at Örebro University to better understand the study's aim. Nursing staff’s perceptions of working with palliative care were that it was perceived as a very purposeful and rewarding work. The results are based on informant’s fruitful information that we have taken note of by the interviews. The study will support nursing staff to highlight a number of important factors that are important in meeting difficult situations in the care of patients in order to achieve a good and dignified death for the patients.

No description available.

Vid palliativ vård av barn är det viktigt att besittakunskap inom både palliativ vård och barn då det är en komplex situation. Tidigare forskning har visat på svårigheter och kunskapsluckor inom den palliativa barnsjukvården. Syftet med studien var att belysa sjuksköterskors erfarenheter av att vårda barn i ett palliativt skede. En litteraturstudie genomfördes, där tio artiklar granskades, bearbetades och analyserades. Artiklarnas resultat kategoriserades i fyra grupper: erfarenhet av stöd och relation, erfarenhet av vårdorganisation, erfarenhet av den professionella rollen samt erfarenhet av förändring utav behandling. Sjuksköterskorna upplevde att stöd var centralt vid palliativ vård av barn. De tar upp att både stödet från organisationen, mellan kollegor samt stödet till familjen var avgörande för god palliativ vård. Relationen var även central i all palliativ vård av barn då hela familjen var i fokus. I denna nära relation upplevde sjuksköterskorna att det var svårt att behålla de professionella gränserna. Palliativ vård av barn är ett nytt forskningsområde. I framtiden bör forskningen fokusera på att undersöka mer specifika förhållanden som till exempel stöd. En annan aspekt är att organisationen ger sjuksköterskorna möjlighet att ta till sig den forskning som finns inom området för att förbättra vården. Förbättrad utbildning och möjlighet till vidareutbildning inom palliativ vård av barn för sjuksköterskorna är av stor vikt. / In palliative care of children it is important to have knowledge of both palliative care and children as it is a complex situation. Previous research has shown difficulties and knowledge gaps in the pediatric palliative care. The aim of the study was to illustrate nurses’ experiences of caring for children in the end-of-life. A literature study was conducted, where ten articles were reviewed, processed and analyzed. The results of the articles were categorized into four groups: experience of support and relationship, experience of the care organization, experience of the professional role and experience of change in treatment. The nurses experienced that support had a central role in pediatric palliative care. They address the support from the organization, between colleagues as well as the support to the child’s family as significant for good palliative care. The relationship was central in all pediatric palliative care as the whole family was involved. In this close relationship the nurses had difficulties maintaining the professional boundaries. Pediatric palliative care is a new research field. In the future research should focus on specific conditions such as support. Another aspect is that the organization gives nurses the opportunity to take part of this research to improve the care. Improved education and the possibility to get education in palliative care of children for the nurses are of great importance.

Darbo tikslas – ištirti psichosocialinių paslaugų organizavimą slaugos ligoninėje paliatyvių ligonių artimiesiems. Darbo uždaviniai: 1. Ištirti paliatyvių ligonių artimųjų esamų psichosocialinių paslaugų poreikį. 2. Įvertinti psichosocialinių paslaugų poreikio tenkinimą. 3. Išsiaiškinti naujų psichosocialinių paslaugų poreikį. Tyrimo metodika: Tyrimo objektas – psichosocialinių paslaugų organizavimas slaugos ligoninėje paliatyvių ligonių artimiesiems. Tyrimo metodas – anoniminė paliatyvių ligonių artimųjų (n=67) anketinė apklausa. Duomenų analizė atlikta naudojant statistinės duomenų analizės SPSS 13.0 for Windows versiją ir Microsoft Exel programą. Rezultatai. Didžiajai daliai tiriamųjų sąveikos su sveikatos priežiūros darbuotojais (88,4 proc.), ligoniui teikiamos priežiūros ir procedūrų kokybės (89,1 proc.), informacijos ir pagalbos (81,2 proc.) bei psichologinės paramos (68,0 proc.) poreikiai yra svarbūs. Lyčių ir slaugymo patirtį turinčių/neturinčių tiriamųjų poreikių svarba skyrėsi: sąveikos su sveikatos priežiūros darbuotojais ir psichologinės paramos poreikis svarbesnis moterims ir artimąjį slaugiusiems asmenims, o ligoniui teikiamos priežiūros ir procedūrų bei informacijos ir pagalbos poreikis svarbesnis moterims ir artimojo neslaugiusiesiems. Tiriamųjų poreikiai patenkinami nevienodai. Sąveikos su sveikatos priežiūros darbuotojais poreikis patenkinamas (49,7 proc.), tačiau labiau užtikrinamas moterims ir slaugymo patirtį turintiesiems. Priežiūros ir procedūrų... [toliau žr. visą tekstą] / Aim of the study - to analyse the management of psychosocial services for the relatives of palliative care patients at nursing hospital. Objectives: 1. To determine the demand for existing psychosocial services for the relatives of palliative care patients. 2. To evaluate supply of this demand. 3. To establish the demand for new psychosocial services. Material and methods. The study object – management of psychosocial services for the relatives of palliative care patients at nursing hospital. The survey implied the anonymous questionnaire (n=67) for the relatives of palliative care patients. Statistical data analysis was performed using statistical package „ SPSS 13.0 for Windows“ and „Microsoft Excel“ software. Results. The majority of responders pointed out, that the needs to interact with health care staff (88.4%), to receive high quality of health care and procedures (89.1%), information and aid (81.2%), and psychological support (68.0%) all are relevant. The analysis of demands' perception regarding to gender and prior experience of care (experienced subjects and non-experienced subjects) demonstrated following differences: relevance of interaction with health care staff and of psychological support was higher for women and experienced subjects, while the quality of care and procedures as well as information and aid were more relevant for women and non-experienced subjects. The coverage of demands was different. The needs of interaction with health care staff was... [to full text]

Pain requiring treatment is experienced by many cancer patients at the end of life. When these patients stay at home, family caregivers are often directly implicated in pain management. There are few studies that examine the process that these family caregivers engage in when they take on the responsibility of pain management. This means we need information on whether or not these family caregivers are prepared for management to ensure proper support and optimal pain control. / The purpose of this qualitative study was to study the process used by family caregivers at home to manage the pain of palliative cancer patients using a grounded theory approach. A total of 24 family caregivers with differing relationships to the patient and differing lengths of caregiver experience participated. Family caregivers were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews, field notes, and memos. Data analysis used Strauss & Corbin's (1998) suggestions for substantive coding: open, axial, and selective coding. / The results lead to the proposition of an explanatory theory titled "the puzzle of pain management," which include: 1) a frame of the process of "drawing on past experiences"; 2) puzzle pieces representing the process "strategizing a game plan" which include the sub-processes of "accepting responsibility," "seeking information," and "establishing a pain management relationship"; 3) puzzle pieces representing the process of "striving to respond to pain" which include the sub-processes of "determining the characteristics of pain," "implementing a strategy for pain relief," and "verifying if pain relief strategies were successful; and 4) "gauging the best fit," a decision-making process that joins the two pieces of the puzzle. / The realization that family caregivers assemble a puzzle of processes indicates that there are factors that nurses must be aware of before creating, teaching, and implementing interventions for pain management. Furthermore, the results provide information to create and subsequently administer interventions based on caregivers' existing knowledge, identified needs for information and support, and current pain management regimens. The puzzle of pain management must be validated by further studies using this theory, in part, to help create interventions that will allow us to know how useful the theory is in practice. / Keywords: family caregivers, carers, pain management, palliative care, cancer pain, home care, grounded theory

Syfte: Syftet med studien var att beskriva föräldrars upplevelse kring när deras barn befinner sig i det terminala skedet av svår sjukdom eller trauma, och av den palliativa vård de erhåller. Ett ytterligare syfte var att kvalitetsgranska artiklarna utifrån datainsamlingsmetod. Metod: Den föreliggande litteraturstudien har en beskrivande design. Sökningar gjordes i databaserna PubMed och Cinahl med sökorden child, parent, experience, palliative care och death. Tretton artiklar valdes ut och bearbetades. Huvudresultat: Det framkom att föräldrar upplevde att vägen mot att förlora ett barn var en kaosartad och känsloladdad tid. De beskrev förlusten av kontroll, att vägra ge upp hoppet, svårigheterna med beslutsfattandet kring barnet samt vad som utmärker en god förälder i denna svåra tid. Upplevelsen av den pediatriska palliativa vården speglade vårdpersonalens förhållningssätt, där en god omvårdnad enligt föräldrarna handlade om en god kommunikation, kontinuitet i vårdteamet samt relationsskapande. Slutsats: Med vetskapen om vilken tid av känslomässigt kaos och sorg föräldrar upplever då de är på väg att förlora sitt barn, kan sjuksköterskan utveckla ett medmänskligt förhållningssätt gentemot dessa familjer. / Aim: The purpose of the study was to describe parental experiences of when their children are in the terminal stage of severe illness or trauma, and of the palliative care they receive. A further aim was to make a quality review of the articles by their data collection method. Methods: This litterature review has a descriptive design. Litterature searches were made in the databases PubMed and Cinahl, using the search terms child, parent, experience, palliative care and death. Thirteen articles were chosen and processed. Result: The study shows that parents experienced the path towards losing a child as a chaotic and emotional time. They described the loss of control, refusal to give up hope, the difficulties with the decision making process regarding the child and what factors define a good parent in these difficult times. The experience of the pediatric palliative care reflected health care professionals approach, where good care according to the parents includes good communication, continuity within the healthcare team and bond making. Conclusion: With knowledge of what time of emotional chaos and sorrow parents experience when they are about to lose their child, the nurse can develop a charitable approach towards these families.