Although the curative model of medical care is predominant it is necessary to consider the palliative strategies at the end-of-life. The inter-relation of dying children, their families and pediatric palliative care teams are seldom analyzed outside Palliative Care. However, it is important to ethnographically think about the disturbing experiences of body and subject disintegration while people are directly experiencing them, even when the person is a child or a newborn baby. A central topic in this study is how personhood, body formation and disintegration, and childhood can be understood within the context of unevenly constructed and shared palliative communication with and without words. Hence, I analyze in this study how a Palliative Care Team in the city of Buenos Aires provides care, communicates, and ultimately produces a particular companionship to dying children and their families. This work is built on qualitative information gathered and produced during my four-month fieldwork with the Palliative Care Team. The ethnographic techniques (participant observation, non-participant observation and open-ended semi-structured interviews) I conducted show that their strategies of care and communication have as the main goal the process of companionship at the end of children’s lives. It is necessary to understand how patients, parents, and other family members are situated in this field of tensions between restorative and palliative medicine, and brought into this culture of Palliative Care in a public children’s hospital. My research asks, in what ways are pediatric Palliative Care practices exclusive to the social and cultural contexts of Buenos Aires? This work has three main sections: 1. care, 2. communication, and 3. companionship. In section one I focus on the clinical and non-clinical aspects of care involving the professionals’ and volunteers’ practices of giving care. In section two I concentrate my attention on the verbal and non-verbal aspects of the Palliative Care Team communication with children and families. In section three I consider the professional production of ‘companionship’. In this thesis I will demonstrate the significance of this concept according to the Palliative Care Team members and how care and communication are the base for the ‘production of companionship.’

Although the curative model of medical care is predominant it is necessary to consider the palliative strategies at the end-of-life. The inter-relation of dying children, their families and pediatric palliative care teams are seldom analyzed outside Palliative Care. However, it is important to ethnographically think about the disturbing experiences of body and subject disintegration while people are directly experiencing them, even when the person is a child or a newborn baby. A central topic in this study is how personhood, body formation and disintegration, and childhood can be understood within the context of unevenly constructed and shared palliative communication with and without words. Hence, I analyze in this study how a Palliative Care Team in the city of Buenos Aires provides care, communicates, and ultimately produces a particular companionship to dying children and their families. This work is built on qualitative information gathered and produced during my four-month fieldwork with the Palliative Care Team. The ethnographic techniques (participant observation, non-participant observation and open-ended semi-structured interviews) I conducted show that their strategies of care and communication have as the main goal the process of companionship at the end of children’s lives. It is necessary to understand how patients, parents, and other family members are situated in this field of tensions between restorative and palliative medicine, and brought into this culture of Palliative Care in a public children’s hospital. My research asks, in what ways are pediatric Palliative Care practices exclusive to the social and cultural contexts of Buenos Aires? This work has three main sections: 1. care, 2. communication, and 3. companionship. In section one I focus on the clinical and non-clinical aspects of care involving the professionals’ and volunteers’ practices of giving care. In section two I concentrate my attention on the verbal and non-verbal aspects of the Palliative Care Team communication with children and families. In section three I consider the professional production of ‘companionship’. In this thesis I will demonstrate the significance of this concept according to the Palliative Care Team members and how care and communication are the base for the ‘production of companionship.’

Although the curative model of medical care is predominant it is necessary to consider the palliative strategies at the end-of-life. The inter-relation of dying children, their families and pediatric palliative care teams are seldom analyzed outside Palliative Care. However, it is important to ethnographically think about the disturbing experiences of body and subject disintegration while people are directly experiencing them, even when the person is a child or a newborn baby. A central topic in this study is how personhood, body formation and disintegration, and childhood can be understood within the context of unevenly constructed and shared palliative communication with and without words. Hence, I analyze in this study how a Palliative Care Team in the city of Buenos Aires provides care, communicates, and ultimately produces a particular companionship to dying children and their families. This work is built on qualitative information gathered and produced during my four-month fieldwork with the Palliative Care Team. The ethnographic techniques (participant observation, non-participant observation and open-ended semi-structured interviews) I conducted show that their strategies of care and communication have as the main goal the process of companionship at the end of children’s lives. It is necessary to understand how patients, parents, and other family members are situated in this field of tensions between restorative and palliative medicine, and brought into this culture of Palliative Care in a public children’s hospital. My research asks, in what ways are pediatric Palliative Care practices exclusive to the social and cultural contexts of Buenos Aires? This work has three main sections: 1. care, 2. communication, and 3. companionship. In section one I focus on the clinical and non-clinical aspects of care involving the professionals’ and volunteers’ practices of giving care. In section two I concentrate my attention on the verbal and non-verbal aspects of the Palliative Care Team communication with children and families. In section three I consider the professional production of ‘companionship’. In this thesis I will demonstrate the significance of this concept according to the Palliative Care Team members and how care and communication are the base for the ‘production of companionship.’ / Arts, Faculty of / Anthropology, Department of / Graduate

Background: Each year about 480 children in Sweden receive palliative care and a child’s death has a great impact on everyone involved with the child. Nurses have a responsibility to ensure that the child remains comfortable and experiences dignity until end of life. Caring for children in a palliative stage has shown to be overwhelming for nurses and there is of great importance to determine the nurses own experiences. Aim: The aim of this study was to describe nurses’ experiences of caring for children in a palliative stage. Method: The method used was a literature study with the aim to contribute to evidence based care with an analysis based on qualitative research. Twelve scientific articles were analyzed and three themes and nine subthemes emerged. Results: Relationships were created between the nurses, the children and their families. These relationships made it difficult for the nurses to maintain professional boundaries, which resulted in an emotional impact both during the care and after the child’s death. There were occasions when differences of opinion arose between the nurses and the guardians about the best interests of the child and during these circumstances the nurses needed to advocate for the child. Lack of resources and difficulties in symptom management was also challenging for the nurses during the end-of-life care. Support and additional knowledge was significant to enable further work within the area. Conclusions: Caring for children in a palliative stage is emotionally demanding which makes it difficult for nurses to remain professional. Since nurses have a responsibility to advocate for the children, differences in opinions will occur. Guardians need to be fully informed to make decisions based on the best interests of the child. There is also a need of resources, knowledge and support.

Bakgrund. Vård av döende barn kan vara psykiskt påfrestande för många sjuksköterskor som arbetar på neonatala intensivvårdsavdelningar. Internationella studier visar på att de främsta faktorerna är; brist på utbildning inom neonatal palliativ vård och brist på kommunikation. Syfte. Syftet med studien var att beskriva samband mellan sjuksköterskors attityder till att vårda döende barn på en neonatal intensivvårdsavdelning och arbetslivserfarenhet samt utbildningsnivå. Metod: Studien genomfördes med en webbaserad enkät på de neonatala intensivvårdsavdelningarna vid Norrlands Universitetssjukhus i Umeå samt Akademiska sjukhuset i Uppsala. Studien inkluderade 72 sjuksköterskor med erfarenhet av att vårda minst ett döende barn. Studien är en empirisk kvantitativ tvärsnittsstudie med deskriptiv design. Resultat. Alla sjuksköterskor med kort arbetslivserfarenhet ansåg att det var psykiskt påfrestande att vårda döende barn jämfört med 61% av de med lång erfarenhet. Mer än hälften (59%) av de utan vidareutbildning jämfört med de med vidareutbildning (16%) ville  undvika situationer där de behövde vårda döende barn. Av alla deltagarna önskade 85% mer utbildning än vad de fick i nuläget om vård av döende barn. Konklusion. Brist på vidareutbildning, kort arbetslivserfarenhet och hög tjänstgöringsgrad i konkret omvårdnadsarbete ökar risken för negativa attityder och uppfattningar bland sjuksköterskor i vården av döende barn. / Background. It can be a challenge for nurses to care for dying children in a neonatal intensive care unit. International studies show that the main factors are; lack of training in neonatal palliative care and lack of communication within the health care team. Objectives. The aim of this study was to describe the correlation between nurses' attitudes of caring for dying children in a neonatal intensive care unit and work experience and level of education. Method. The study was conducted using a web-based survey in the neonatal intensive care units at Norrland University Hospital in Umeå and Uppsala University Hospital. The study included 72 nurses with experience of caring for at least one dying child. The study is an empirical quantitative cross-sectional study with descriptive design. Results. All nurses with short work experience felt that it was psychologically stressful to care for dying children , compared with 61 % of those with long work experience. More than half (59%) of those without further education compared to those with further education ( 16%) wanted to avoid situations where they have to care for dying children. Of all the participants 85% wanted more education about caring for dying children. Conclusion. Lack of education, brief work experience and a high degree of service in the real nursing work increases the risk of negative attitudes and perception in the care of dying children among nurses.