Individuals with advance-stage illnesses frequently face illness or treatment-related adverse effects in the mouth. These adverse effects can have serious consequences. Despite that, the importance of oral care in this population is often overlooked and there are no definitive guidelines as to what kind of oral care should be provided to these individuals. Given that, our study aims were to explore and better understand the oral health-related concerns, perceived oral care needs of palliative care patients and the berries that face in accessing dental care services. We conducted a qualitative description study by recruiting a purposive sample of 11 participants with advanced stage health conditions from the outpatient palliative care services of the University of Iowa Hospitals and Clinics. Data were collected using in-depth, semi-structured interviews using an interview guide. All interviews were fully transcribed, with the data managed with Atlas.ti software to facilitate the analysis. All participants had oral concerns although they varied widely from person to person and their illness statuses. The most significant concerns were related to dry mouth, loose dentures, and eating difficulties. Among those who stated that they would seek dental care if required, they were not planning on seeking dental care even though they had treatable oral problems, suggesting a mismatch between their oral health status and their perceived needs. The frequently observed barriers that prevented them from seeking dental care were their illness and illness related priorities, finances, feeling discriminated against by the dentist, and a dislike towards the dentist. Providing information to the palliative care clinicians about the significance of oral health and its impact, incorporating a dental care provider in palliative care team, and providing timely information to individuals with advanced health conditions may enhance the understanding of their oral health problems and help them better manage their oral health and may enhance their dental care seeking behavior.

Bakgrund: Den palliativa vården blir allt viktigare för personer med icke-cancersjukdomarsom hjärtsvikt. Flera intresseorganisationer och internationella yrkesföreningar trycker påbehovet för tidigare information rörande prognos och integrering av palliativ vård för dessapatienter. Trots detta står denna patientgrupp ofta utan denna typ av vård och stöd även närpatienten närmar sig ett terminalt skede av livet. Syftet var att undersöka barriärer som fannsför initiering av palliativ vård hos vuxna patienter med hjärtsvikt Metoden var en ickesystematisk litteraturöversikt med ett systematiskt arbetssätt där totalt 17 artiklar valdes ut fördatagranskning. Resultatet visade på flera barriärer som kunde sammanfattas underrubrikerna Personalrelaterade barriärer, Patientrelaterade barriärer samt Organisatoriskabarriärer. Slutsatsen Resultatet identifierade flertalet komplexa barriärer som var patient,personal och organisatoriskt beroende. Dessa barriärer försvårade integrering av denpalliativa vården hos patienter med hjärtsvikt. Att möjliggöra för sjukvården att skapa godarelationer med proaktiv kommunikation är av stor vikt. Vidare behövs organisatoriskt stödmed tid för samtal, personalkontinuitet, utbildning och förbättrad kommunikationsförmåga.Detta tillsammans med tydligare riktlinjer och samarbete inom vården. / Background Palliative care is becoming increasingly important for patients with noncancerous diseases such as heart failure. Several interest groups and international professionalassociations emphasize the need for timely information regarding prognosis and integrationof palliative care for these patients. Despite this, this patient group is often without this typeof care and support even when the patient is approaching a terminal stage of life. Aim Wasto investigate barriers that existed for the initiation of palliative care in adult patients withheart failure. Method The method used was a non-systematic literature review with asystematic approach where a total of 17 articles were selected for data review. Result The results showed several barriers that could be summarized under the headings under theheadings Personnel-related barriers, Patient-related barriers and Organizational barriers. Conclusion The results identified several complex barriers that were patient, staff andorganizational dependent. These barriers made it more difficult to integrate palliative care forpatients with heart failure. Enabling the creation of good relationships with proactivecommunication in healthcare is of great importance. Furthermore, support from theorganization is needed which includes time for conversations, staff continuity, training andimproving communication skills. This together with clearer guidelines and cooperation inhealthcare.

Bakgrund: I Sverige vårdas döende patienter både på hospice och på allmänna vårdavdelningar. Vissa av dessa patienter uttrycker en önskan om att få påskynda döden. Sjuksköterskor beskriver ibland en osäkerhet i hur de ska bemöta dessa patienter och vad denna önskan består i. Det kan finnas olika bakomliggande orsaker till en förfrågan av den här typen och en del av dessa kanske går att åtgärda. Syfte: Att beskriva bakomliggande faktorer till att vissa svårt sjuka patienter önskar påskynda sitt döende. Metod: En litteraturstudie baserat på 11 vetenskapliga artiklar genomfördes. Resultat: Rädsla inför lidande i framtiden visade sig vara den mest förekommande faktorn till att vissa patienter önskade påskynda döendet. Fler bidragande orsaker var svåra symtom (särskilt smärta), förluster av bland annat identitet och värdighet, samt en känsla av att vara en börda. Kombinationen av flera faktorer orsakade ett svårt lidande för patienten, och väckte en önskan om få avsluta livet innan lidandet blev för stort. Slutsats: Svårt sjuka patienters önskan om en påskyndad död betyder inte alltid att de önskar att dö, utan kan vara en följd av svåra smärtor eller annat lidande. Om dessa faktorer kan kontrolleras finns kanske en möjlighet att patientens lidande minskar. Klinisk betydelse: Denna studie bidrar till en ökad förståelse hos sjuksköterskor om vilka faktorer som påverkar patientens välbefinnande i livets slutskede. Genom att uppmuntra till ökad medvetenhet kring de riktlinjer och åtgärder som finns, framför allt i den allmänna vården utanför hospice, kan bemötandet av dessa patienter förbättras. / Background: In Sweden dying patients are cared for both in hospices and at ordinary wards. Some of these patients wish to hasten their death. Nurses sometimes describe insecurity in how to respond to a patient‟s death wish. There can be different reasons why a patient asks for euthanasia, some may be possible to eliminate. Aim: The aim of this study was to describe why some terminally ill patients wish to hasten their death. Method: A literature review based on 11 scientific papers was made. Findings: Fear of suffering in the future turned out to be the most common contributing reason to why patients wanted to end their lives. Other reasons were severe symptoms (especially pain), loss of identity and dignity, among other things, and feelings of being a burden. A combination of different factors led to a severe suffering for the patient, and a wish of ending life before the suffering grew too severe. Conclusion: Severely ill patient‟s wishes to hasten death do not necessarily mean they want to die, but can be an expression of a difficult pain or suffering. If these factors can be controlled or eliminated, there is a possibility that the patients suffering decreases. Clinical significance: This study contributes to a better understanding among nurses about the factors that influences patient‟s wellbeing at the end of life. By encouraging to a raised awareness of the existing guidelines and interventions, especially in the primary care outside of hospices, the treatment of these patients can improve.

Hospice services provide a holistic approach to end-of-life care to terminally ill patients though there is some evidence to suggest that African American military beneficiary populations may not access hospice care as often as expected. The purpose of this nonexperimental study was to evaluate reasons for the low use of hospice care among the terminally diagnosed members of this population, between the ages of 18 and 64. Kolcaba's comfort theory provided the theoretical framework for this study. The research explored whether a statistically significant difference exist among African Americans military beneficiaries population as compared to non-Hispanic Whites pertaining to their knowledge of hospice care, attitudes and beliefs about hospice, distrust in the health care system, and advanced care plans. This study used a simple random sample of 32 participants (18 African Americans and14 non-Hispanic White) from a military ambulatory care setting in Maryland. Johnson, Kuchibhatla, and Tulsky's End-of-Life Care survey was used to collect data from the 2 groups of participants. Data were analyzed using a one-way multivariate analysis of variance. The results indicate that there are not statistically significant differences between the groups in terms of knowledge of hospice care, attitudes and beliefs about hospice, distrust in the health care system, and advanced care plans based on race. Based on the results of this study, further research is recommended to replicate using a larger sample size to include other minority groups at more than one medical treatment facility. The implication of this study may open up an avenue to policy makers and administrators who are responsible for disseminating information about hospice benefits to focus on improving the quality of the end-of-life for terminally ill patients.

No description available.

Bakgrund Palliativ vård är en vårdform som ska lindra lidande och förbättra livskvalitén hos patienter och anhöriga när sjukdom inte längre går att bota och livet går mot sitt slut. Palliativ vård utgår från ett helhetsperspektiv (holism). Det finns en ojämlikhet i tillgänglighet till palliativ vård globalt, då endast en liten andel av de med palliativa vårdbehov får detta tillgodosett. Det blir allt vanligare med palliativ vård i hemmet. Studier visar på bristfällig forskning av patienters upplevelser av denna vårdform. Syfte Syftet med litteraturöversikten var att undersöka patienters upplevelser av palliativ vård i hemmet. Metod En litteraturöversikt med systematisk ansats genomfördes i tre databaser; PubMed, CINAHL Complete och Nursing & Allied Health Premium. Femton vetenskapliga artiklar med kvalitativ data valdes ut och analyserades med Thomas och Hardens tematisk analys. Resultat Resultatet visade att hemmet är en viktig plats för patienter med palliativa vårdbehov för att öka välbefinnande och även öka möjlighet till närhet till anhöriga. Hemmet bidrog till normalitet och oberoende trots svår sjukdom. Det framkom att vården i hemmet kunde upplevas både trygg och otrygg beroende på hur vården var organiserad. Patienterna hade en oro för att svårbehandlade symtom skulle uppstå i hemmet eller att de skulle vara en börda för anhöriga. Det var viktigt för patienterna att ha en god relation till hälso- och sjukvårdpersonalen. Det framkom att patienters emotionella behov blev otillräckligt bemötta. Slutsats Hemmet är en viktig plats för patienter med palliativa vårdbehov. När vårdpersonalen samordnar vården och har ett gott bemötande ökar patienters trygghet och välbefinnande. Alla patienter bör få tillgång till palliativ vård av god kvalitet vid livets slut. Mer forskning behövs som belyser patientperspektivet inom denna kontext. / Background Palliative care is a form of care that is supposed to ease suffering and enhance patients and relatives’ quality of life during terminal illness at the end of life. There is an inequality in access to palliative care worldwide, since only a few of those in need receive it. It´s becoming more and more common with palliative home care. Studies show that there is a lack of knowledge about patients experience of this form of care. Aim The aim of the literature review was to explore patients’ perspective of palliative home-based care. Methods A literature review with a systematic approach were performed in three databases: PubMed,CINAHL Complete and Nursing & Allied Health Premium. Fifteen scientific articles of qualitative data were selected and analysed through three steps based on Thomas and Hardens thematic synthesis. Results The result showed that the patient´s home is an important place for terminally ill patients since it enhanced their wellbeing their ability to be close to relatives. Being at home also gave a sense of normality and independence despite severe illness. Home-based palliative care could be perceived as both safe but also unsafe depending on how well the care was organized. Patient´s worried that intractable symptoms would occur in their home or that they would be perceived as a burden to their relatives. It was important for patient´s to establish a good relationship with the healthcare professionals. Sometimes the patient´s emotional needs were insufficient met. Conclusions The patients home seem to be an important place for patients with palliative needs. When the health care staff coordinates care and have a friendly reception it increases the patients’ security and well-being. All patients should have access to palliative care of good quality at the end of life. More research reflecting the patient’s perspective in this context is needed.

Thesis (DTh (Practical Theology and Missiology))--University of Stellenbosch, 2004. / ENGLISH ABSTRACT: This dissertation aimed to ascertain, in a practical theological way, how to bridge the gulf between the congregation and the AIDS community using home based care as the vehicle of change. The initial hypotheses of the research were based upon a model initially developed by World Vision in Nkhotakota, Malawi. The research question, which the study address, is as follows: 1. Can the negative attitudes, prejudices and behaviours which are held and demonstrated by many in the church towards those suffering with HIV/AIDS, be changed by using deliberate attempts to alter their perspective of this pandemic by providing accurate information, in juxtaposition with the demonstration of Christ’s love and compassion to this community? 2. In conjunction to this first question comes a second: Can the compassionate outreach of the church, as it follows Christ’s mandate to love change the perspective of those in the HIV/AIDS community so that instead of viewing the church (as a whole) as cold and unloving, their perception will change with the demonstration of such love and compassion by its membership that they begin to see the church as a source of hope and love? To describe the contextual situation in which this study takes place, the historical background concerning the church’s response to the issue of the HIV/AIDS pandemic was explored in chapter two. The third chapter discusses the cultural paradigmatic focuses, unique to the African situation, with attention to the role in the church as it seeks to comply with its mandated mission. Chapter four then examines the cultural practices found, specifically in the Malawian context, that promote the spread and transmission of the HIV/AIDS virus amongst the Chewa people and the surrounding tribes. Over and against the identified traditional practices and their interrelationship with the worldviews of the people of Malawi, chapter five focuses on the practical theological implications of the church seeing to find identity in Christ. The ramifications of the praxis process regarding this hermeneutic, in consideration with the response of the Church as it seeks to reflect the character of the God, as represented primarily by the attribute of love towards those who are suffering from being infected or affected by this disease are explored in this chapter. It deals with the theological ramifications concerning the faith community as it represents the body of Christ by providing eschatological hope to this suffering world. The remaining chapters describe the methodology and praxis process utilizing the research hypothesis developed from the Nkhotakota model. Final conclusions were then drawn in order to provide understanding as to how to obediently participate in God’s witness to the world as the faith community addresses the problem of the HIV/AIDS pandemic in very poor areas in Malawi. Although the initial optimistic goals of this research were not met as anticipated, essential discoveries that illuminate the faulty paradigms associated with critical issues such as the effects of abject poverty were exposed. Difficulties that were initially considered secondary to the main thrust of this research, whose complexities are generally misunderstood by the western paradigm came to light as the praxis process unfolded. Attempts to sidestep stark issues such as poverty, in order to address the ‘real’ issues under study served to highlight these problems as their magnitude forced their recognition and consideration. This research has exposed is the necessity for further exploration into the intricate ramifications of issues such poverty by demonstrating the unfortunate fact that for those struggling to survive at the lowest levels of Maslow’s hierarchy, the luxury of benevolent service is simply not possible. For these, there is no other issue but survival. Calling on these sufferers to act as ‘the church’ when their need is so dire is not only unrealistic, it borders on sacrilege. / AFRIKAANSE OPSOMMING: Hierdie tesis beoog om op ‘n prakties-teologiese wyse vas te stel hoe om die kloof tussen ‘n gemeente en ‘n Vigs-gemeenskap te oorbrug met tuisversorging as medium van verandering. Die aanvanklike hipoteses van die navorsing is gebaseer op ‘n model wat oorspronklik deur World Vision by Nkhotakota, Malawi, ontwikkel is. Die navorsingsvraag waarop dié studie gerig word, is die volgende: 1. Kan die negatiewe houding, vooroordele en optrede van baie kerklidmate teenoor MIV/Viglyers verander word deur die gebruik van doelgerigte pogings om hul siening van hierdie pandemie te wysig deur die verskaffing van die korrekte inligting, tesame met blyke van Christus se liefde en medelye aan hierdie gemeenskap? 2. Tesame met hierdie eerste vraag, volg ‘n tweede. Kan die kerk se deernisvolle uitreik, met die betoning en uitvoer van Christus se opdrag om liefde te gee, die siening van mense in die MIV/Vigs gemeenskap só wysig dat, in plaas dat hulle die kerk (as ‘n geheel) ervaar as koud en liefdeloos, hulle hierdie begrip wysig deur die lidmate se betoning van dié liefde en deernis, dat hulle begin om die kerk te beskou as ‘n bron van hoop en liefde? Die beskrywing van die kontekstuele situasie waarin hierdie studie plaasvind, sowel as die historiese agtergrond ten opsigte van die kerk se respons tot die vraagstuk van die MIV/Vigs pandemie, is in hoofstuk twee ondersoek. Die derde hoofstuk bespreek die kulturele paradigmatiese fokusse, uniek aan toestande in Afrika. Dit gee aandag aan die rol van die kerk in sy doelwit om sy sendingmandaat uit te voer. Hoofstuk vier ondersoek die kulturele praktyke wat, spesifiek in die Malawiese konteks, die verspreiding en transmissie van die MIV/Vigs virus onder die Chewa bevolking en omliggende stamme bevorder. Bo en behalwe die geïdentifiseerde tradisionele praktyke en hul betrekking op die Malawiërs se lewens- en wêreldbeskouing, fokus hoofstuk vyf op die prakties-teologiese implikasies van die liefdesgebod. Die uitgangspunt van die hoofstuk is dat die kerk in haar uitreik tot hulle wat ly, iets van die (liefde) karakter van God moet weerspieël. Die praxis proses het dus liefde as hermeneutiese sleutel. Teologies gesproke moet die geloofsgemeenskap, as die liggaam van Christus, eskatologies hoop aan hierdie lydende wêreld verskaf. Die res van die hoofstukke beskryf die metodologie, proses en navorsingshipotese wat ontwikkel is uit die Nkhotakota model. Die finale gevolgtrekkings spreek die probleem aan van hoe om die MIV/Vigs pandemie onder mense wat in uiters arm stedelike areas in Malawi woon, aan te spreek en ‘n Christelike getuienis te lewer. Al is die aanvanklike optimistiese doelwitte van hierdie navorsing deels bereik, is wesenlike ontdekkings gemaak wat die foutiewe paradigmas in verband met kritieke vraagstukke, soos die invloed van volslae armoede, blootgelê. Probleme wat aanvanklik sekondêr beskou is tot die hoofmikpunt van die navorsing het aan die lig gekom in die navorsingsproses. Dit was duidelik dat die ingrype in die gemeenskap die vervreemding tussen die kerk en vigslyers positief verander het. Veel meer waardering en aanvaarding het ontwikkel. Maar: die kompleksiteit van die probleem word in die algemeen deur die westerse paradigma oppervlakkig verstaan. Die navorsing het bepaalde implikasies van armoede en blootgelê. Vir mense wat op die laagste vlakke van Maslow se behoeftes-rangorde ‘n stryd het om te bestaan, is die luukse van vrywillige diens aan ander eenvoudig nie moontlik nie. Vir hulle is een saak oorheersend: oorlewing. Om vanuit ‘n lewe vol sekuriteite hierdie armes op te roep om op te tree as onbetaalde dienswerkers, terwyl hul eie nood so groot is, is nie net onrealisties nie, maar ongevoelig.

published_or_final_version / Social Work / Master / Master of Social Work

published_or_final_version / abstract / Social Work and Social Administration / Doctoral / Doctor of Philosophy

No description available.