published_or_final_version / Social Work / Master / Master of Social Sciences

Thesis (M.S.)--University of Michigan, 1992.

Background:  In the hospice care specialized palliative care is practiced on patients that are at the end of their lives, and nurses meet grieving relatives on a daily basis, both after and before the event of death. When the patient is deceased the relatives are offered to be present in the room while the nurses provide care for the deceased individual. It’s not as well-known if the relatives are offered to help the nurses care for the dead body. Aim: The purpose of the study is to investigate whether nurses’ have experiences of    caring for the dead body together with the relatives. Method: A qualitative method has been used with semi-structured telephone interviews. The material has been analyzed with a qualitative content analysis according to Granheim and Lundman (2004). Eight nurses in the hospice care, in the middle and south of Sweden, have been interviewed. From these eight nurses, five have experiences of providing care for the dead body together with the relatives. Results: The analysis resulted in a main theme, participation in the light, with three subthemes, mutual caring which is beneficial both for nurses and relatives, professional approach which is based on experience and knowledge, as well as collegial learning. Nurses that have the experience of caring for the dead body with the relatives, are seen to have a readiness for action and to provide the care in a respectful fashion. Central for nurses are their interest in participating and to offer others to join in. Discussions: The discussion is based on Andershed’s (1998) theoretical frame of understanding, with the metaphor participation in the light, as well as current research. In the discussion the concepts to know, to be, to do are used. The nurses in the study are contented to provide the care for the dead body together with the relatives. They feel gratification with the relatives’ participation, as they share the experience with them. It provides closure.

Bakgrund: Anhöriga till en patient i livets slutskede befinner sig ofta i en mycket påfrestande situation. Situationen kan upplevas av anhöriga som främmande och oroande. Patienten och dess och anhöriga har rätt att bli bemötta av vårdpersonalen på ett professionellt sätt. Anhöriga är även en viktig del av patientens livsvärld som i samband med patientens sjukdom också lider. Anhörigas behov förbises ofta av vårdpersonalen eftersom fokuset ligger på patienten. Syfte: Syftet med denna litteraturöversikt var att skapa en sammanfattning om vad är anhörigas upplevelse av vårdpersonalens bemötande inom palliativ vården. Metod: Metoden är litteraturöversikt där tio vetenskapliga artiklar har granskats och analyserats. Artiklarna söktes i Cinahl Complete, Medline med full text samt PubMed. Resultat: Tre huvudteman identifierades. Den första Behov och förväntningarsom lyfter kommunikations betydelse samt anhörigas delaktighet i omvårdnaden. Den andra Erfarenheter inkluderar anhörigas positiva och negativa känslor samt förändringar i anhörigas liv. Den sista huvudtema Vårdpersonalens ansvar har i fokus det emotionella stödet samt bemötandet av anhöriga.  Sammanfattning: Resultatet visade att en tydlig kommunikation och stöd från vårdpersonalen hade en god effekt på hur anhöriga upplever bemötandet. Delaktigheten i omvårdnaden hade stor betydelse för anhöriga som oftast ville vara engagerade i alla åtgärder som görs. Stöd under den pågående palliativa vården såsom efter dödsfallet var det anhöriga upplevde som bristfällig. / Background: Relatives of a patient in the final stages of life are often in a very stressful situation. The situation can be perceived by relatives as foreign and disturbing. The patient and his or her relatives have the right to be treated by the care staff in a professional manner. Relatives are also an important part of the patient's lifeworld and in connection with the patients' disease they also suffer. Relatives' needs are often overlooked by healthcare professionals because the focus is on the patient. Aim: The purpose of this literature review was to create a summary of what relatives' experience of the care staff's treatment in palliative care. Method: The method is a literature review where ten scientific articles have been reviewed and analyzed. The articles were searched in Cinahl Complete, Medline with full text and PubMed. Results: Three main themes were identified. The first Needs and Expectations highlight the importance of communication and the relatives´ participation in nursing. The other Experiences include the positive and negative feelings of relatives and changes in the lives of relatives. The last main theme The Responsibility of the care staff focuses on the emotional support and the treatment of relatives. Conclusion: The results showed that a clear communication and support from the care staff had a good effect on how relatives experience the treatment. Participation in nursing was of great importance to relatives who most often wanted to be involved in all measures taken. Support during ongoing palliative care, such as after the death, was perceived by the relatives as deficient.

Bakgrund Anhöriga till patienter i den palliativa vården behöver mer praktisk information och kunskap så att de kan fylla sin vårdande roll. Att ge stöd till anhöriga i deras nya och krävande roller gynnar det patienten, anhöriga och hälso- och sjukvården. Familjefokuserad omvårdnad är ett förhållningssätt som kan bidra till hälsa och välbefinnande för både patienten och familjen med värdighet och respekt. Syfte Syftet var att beskriva anhörigas emotionella upplevelser av palliativ vård på hospice. Metod Litteraturöversikten är en litteraturstudie som är strukturerad och har inslag av den metodologi som tillämpas vid systematiska översikter. Analysen som resultatet baserades på grundades i femton kavlitetsgranskade artiklar. Datasökning genomfördes i databaserna Cinahl och PubMed. Resultat Resultatet visade att det förekom negativa emotionella upplevelser hos anhöriga vid bristande kommunikation och informationshantering. Två huvudkategorier framkom; Kommunikation och- Informationshantering och Stöd från omgivning. Slutsats Anhöriga upplevde vårdandet av familjemedlemmar i livets slutskede som emotionellt krävande. De upplevde även saknad av delaktighet på grund av dålig kommunikation relaterad till brist på information. Anhöriga belyser även att hospicesjuksköterskor samt vårdpersonalen många gånger inte tar hänsyn till deras kunskap och oförberedskap inför den palliativa vården och dess innebörd. Alla dessa utmaningar ledde till tveksamhet, rädsla, oro och tvivel. / Background Relatives of patients in palliative care need to acquire more practical information and knowledge so that they can fulfill their caring role. Giving support to relatives in their new and demanding roles benefits the patient, relatives, and health care. Family-focused nursing is an approach that ensures health and well-being for both the patient and the family with dignity and respect. Aim Aim of this study is to describe relatives' emotional experiences of palliative care in hospice facility. Method This literature review is a literature study that was structured with the element of methodology used in systematic reviews. The analysis was based on fifteen quality reviewed articles. The data search was performed in the databases Cinahl and PubMed. Results The result showed that there were negative emotional experiences among relatives due to lack of communication and information management. Two main categories appeared: Communication and- Information management and Support from the environment. Conclusions Relatives experienced caring for family members at the end of life as emotionally demanding. They also experienced a lack of participation due to poor communication and information. Relatives also highlight that hospice nurses and care staff often do not take into consideration their knowledge and unpreparedness for palliative care. All these challenges led to hesitation, fear, anxiety and doubt.

Palliativ vård – vård i livets slutskede – är inte prioriterat i tredje världen. I Uganda grundades 1993 Hospice Africa Uganda (HAU), ett hospice som var tänkt som modell för andra afrikanska länder. Här utbildas bl a sjuksköterskor som har rätt att skriva ut morfin och andra läkemedel efter en nio månader lång kurs. I den här etnografiska fältstudien används observationer, intervjuer och gruppintervjuer för att undersöka sjuksköterskan roll inom palliativ vård i Uganda. I studien deltar sammanlagt 20 sjuksköterskor som jobbar på HAU, Mulago hospital och studenter i palliativ vård-kursen på HAU. Resultatet visar att sjuksköterskanS roll är mångfacetterad. Utöver förskrivning av läkemedel är deras roll att utföra vården holistisk, där de tar hänsyn till fysisk, psykosocial och andlig smärta. I sitt arbete möter de många utmaningar men de har även möjlighet att förbättra patientens livskvalitet. / Palliative care – end of life care – is not a priority in developing countries. In 1993 Hospice Africa Uganda (HAU) was founded and chosen as a model for other african counties. Among other things nurses are authorised to prescribe morphine and other palliative care drugs after undergoing a nine months clinical palliative care course at HAU. In this ethnographic field study observations, interviews and group interviews are used in order to explore the role of the palliative care nurse specialist in Uganda. In total there are 20 participants involved in this study, who are working at HAU, Mulago hospital and students from the clinical palliative care course. The result of the study reveal that the role of the palliative care nurse specialist is multifaceted. Beyond prescribing drugs their role is to deliver holistic care by taking into consideration the physical, psychosocial and spiritual pain patients and their family can have. They encounter many challenges in their work but they also have the possibility to improve the quality of the patients life.

The hospice volunteer is viewed as an integral member of a multidisciplinary team, with various roles directed at enhancing the quality of life of patients and their families. The purpose of this study is to provide an integrated picture of the hospice volunteer, their role, the human dimensions of this role and the impact this has on their lives as not much has been written in literature about this specific sub-group of hospice workers. The context of the study is a hospice in Gauteng where the researcher works as a volunteer. The ethnographic case study has been chosen as an appropriate research design as it explores the above phenomenon from the volunteers' point of view. The subjects are three volunteers who have been active at the hospice for at least twelve months. Evidence in terms of specific interviews and observations are used to draw conclusions. The interviews are based on a minimal number of open-ended questions. The primary method of analysis is the examination of transcripts from these in-depth interviews. A thematic analysis is carried out in which a detailed description of the emerging themes are given. Four major themes are identified and explored: Description of the role; The experience of being a volunteer; A way of coping; and The influence of the hospice culture. Sub-themes that emerge within each case study vary due to the individual nature of the experience of the role. Themes are explored in light of current theory and findings. This was to note the similarities and differences of this specific sub-group of volunteers compared to others found in the literature reviewed for this study. As there is a scarcity of literature pertaining specifically to hospice volunteers, the study depends mostly on writings pertaining to hospice staff and volunteers in general. A summary and integration of the core findings of the three case studies is given and their similarities and differences are explored. How some of the different themes interlink is also discussed. Although various sub-themes found in the individual case studies are significant to the individual cases, some of them can be incorporated into common themes when looking at the volunteers as a group. The strengths and limitations of the study are discussed as well as recommendations for the hospice organisation and further research. / Psychology / M.A. (Psychology)

The hospice volunteer is viewed as an integral member of a multidisciplinary team, with various roles directed at enhancing the quality of life of patients and their families. The purpose of this study is to provide an integrated picture of the hospice volunteer, their role, the human dimensions of this role and the impact this has on their lives as not much has been written in literature about this specific sub-group of hospice workers. The context of the study is a hospice in Gauteng where the researcher works as a volunteer. The ethnographic case study has been chosen as an appropriate research design as it explores the above phenomenon from the volunteers' point of view. The subjects are three volunteers who have been active at the hospice for at least twelve months. Evidence in terms of specific interviews and observations are used to draw conclusions. The interviews are based on a minimal number of open-ended questions. The primary method of analysis is the examination of transcripts from these in-depth interviews. A thematic analysis is carried out in which a detailed description of the emerging themes are given. Four major themes are identified and explored: Description of the role; The experience of being a volunteer; A way of coping; and The influence of the hospice culture. Sub-themes that emerge within each case study vary due to the individual nature of the experience of the role. Themes are explored in light of current theory and findings. This was to note the similarities and differences of this specific sub-group of volunteers compared to others found in the literature reviewed for this study. As there is a scarcity of literature pertaining specifically to hospice volunteers, the study depends mostly on writings pertaining to hospice staff and volunteers in general. A summary and integration of the core findings of the three case studies is given and their similarities and differences are explored. How some of the different themes interlink is also discussed. Although various sub-themes found in the individual case studies are significant to the individual cases, some of them can be incorporated into common themes when looking at the volunteers as a group. The strengths and limitations of the study are discussed as well as recommendations for the hospice organisation and further research. / Psychology / M.A. (Psychology)

This Thesis deals with the issue of illness and dying, and the care for the dying in different hospice facilities. In describes typical features of palliative medicine, it´s practical use in hospices and also the lack thereof in current Czech Medicine. The legislative side of this issue is discussed in this thesis as well.

CHMELÍKOVÁ, Nikola. The Hospice Care Regulation in the Czech Republic: Charles University in Prague, Faculty of Social Sciences, Institute of Sociological Studies, Department of Public and Social Policy, 2014. Thesis Supervisor Mgr. Ing. Olga Angelovská The thesis titled "The Hospice Care Regulation in the Czech Republic" is about hospice care in the Czech Republic of its development due to the following important foreign and Czech documents in health and social care. The main reason that leads me to the elaboration of this work is particularly ambiguous and rather one-sided definition of hospice palliative care in the Czech Republic in terms of health care. In the analysis and evaluation, which is the main part of the paper I will draw on already existing documents and data that relate to the topic immediately. Another integral part of the consultation and discussion with experts from the ranks of both health and social services in providing care face barriers that currently has inadequate definition of the operation itself. The aim of the thesis is the analysis of documents and data relating to the regulation of hospice care in the Czech Republic, and their subsequent reflection of professionals who care about the issue of dying deal in their working lives. Keywords hospice care, legislation,...