Les équipes ressources régionales de soins palliatifs pédiatriques ont été créées en France, en 2010 dans le cadre d’une politique nationale de développement des soins palliatifs. Mon travail présente un concept aux fondements éthiques appelé « care de second ordre ».Ces équipes, dont la mission est l’intégration de la démarche palliative dans la pratique de tout professionnel de santé, sont particulièrement dédiées aux professionnels de santé. En effet, les professionnels de ces équipes de care de second ordre, doivent assurer conseil et soutien aux professionnels de care de premier ordre ayant la charge d’un patient en situation palliative. Or la pratique quotidienne de ce care de second ordre révèle des tensions éthiques entre le principe de justice qui sous-tend la création de ces équipes (tous les patients qui le nécessitent doivent avoir accès à des soins palliatifs) et les éthiques du care (l’importance de la singularité des situations). Pour résoudre ces tensions éthiques, nous avons utilisé une méthodologie qualitative appelée objectivation participante.Le care de second ordre suppose une pratique éthique, faite d’attitudes et d’activités qui s’acquièrent par un mouvement volontaire de la pensée. Avec l’aide de l’empathie inductive, le care de second ordre doit avoir pour visée éthique l’autonomisation du professionnel de care de premier ordre dans l’identification et la prise en charge de ses propres besoins. Grâce à la narration des histoires cliniques, le care de second ordre doit ajuster les temporalités en jeu, celles du patient, celles de ses proches et celles des professionnels de care de premier ordre. In fine, ce care de second ordre implique un changement majeur de paradigme : la considération de notre interdépendance en lieu et place de notre semblant d’autonomie. Ce concept de care de second ordre, a priori extrapolable aux équipes ayant les mêmes missions, contribue à la réflexion nécessaire sur la modernisation de notre système de santé. / Following the French national strategy to develop palliative care promulgated in 2010, several regional pediatric palliative care teams have been implemented nationwide. Our work will present a fundamental ethical concept, which we call “second order care”.The primary mission of these teams is to integrate a palliative approach in all areas of health care, and they are especially dedicated to assisting health care professionals. For “second order care teams”, this entails advising and supporting “first order care teams” who directly provide for patients in palliative care. However, the daily practice of these second order care teams reveals underlying ethical tensions between the principle of justice which created these teams initially (palliative care must be available to all patients in need of such care) and the ethics of care (importance placed upon the singularity of each situation). In order to resolve these ethical tensions, we used a qualitative methodology known as “participant objectivation”.Second order care implies an ethical practice combining one’s disposition, outlook and activities, which are acquired by voluntary thought movements. The ethical aim of second order carers, with the help of inductive empathy, must be to assist first order carers in being autonomous in identifying and managing their own needs. Using clinical narratives, the second order team must adapt and harmonize the different temporalities in play: that of the patient, of their family and of the first order care team. Ultimately, second order care implies a major paradigm shift: to consider our inter-dependence in place of an illusionary autonomy. The concept of second order care, which can be extrapolated to other teams with identical missions, is a necessary contribution when considering the modernization of our health care system.

The purpose of this study was to increase awareness and understanding of parental caregivers’ current support needs in order to provide direction in the development of a theory-based hope intervention. The intervention is intended to improve psychosocial and bereavement support for parental caregivers of children with life limiting (LLI) or life threatening illnesses (LTI). The number of parents who have children living with a LLI/LTI is increasing. The impact of these illnesses on parents is significant as they travel alongside their child and experience emotional, physical, and spiritual upheaval. Current empirical research reveals that this journey challenges parents’ understanding of life, faith, and certainty in the future. Many studies demonstrated that parents’ needs are not consistently met and parents often reported the need for psychosocial support. Hope has been found to be an important psychosocial concept for parents and has been shown to provide support when facing difficult circumstances. For this reason, the concept of hope provided the conceptual framework for this research. In order to develop a theory-based psychosocial hope intervention for parental caregivers, a large scale privately funded project that included a metasynthesis of current research, a Delphi survey, and focus groups was conducted. All three components of this project were developed by a research team of two doctorate nurse researchers, one pediatric palliative care specialist, one pediatric oncologist, one community member, and a graduate student. The study presented here is based on the Delphi survey only and serves as the graduate student’s master of nursing thesis. A Delphi survey consisting of three rounds of questions and controlled feedback to experts was employed. Sixty-eight experts were recruited including parental caregivers who have children diagnosed with LLIs or LTIs and those who care for them such as community members, nurses, social workers, and physicians. Based on Bally et al.’s (2013) grounded theory of Keeping Hope Possible, the survey focused on four subprocesses that were identified as essential for parental hope. Experts suggested strategies or activities for each subprocess. Answers were summarized and ranked in order of highest to lowest according to feasibility and effectiveness. The final round revealed a consensus and eight major themes emerged: organize basic needs; connect with others; prioritize self-care; obtain meaningful information; take things day by day; advocate for parental participation; manifest positivity; and celebrate milestones. The survey took place via email to allow easy access to experts and parents globally. This study identified needs of parents of children with LLIs or LTIs in order to develop a theory-based psychosocial hope intervention. Results have the potential to provide direction for a newly developing pediatric palliative care program in Western Canada.

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.

Many children with life-limiting health conditions in pediatric palliative care have cognitive impairments or intellectual disabilities (ID). They are confronted with their own death and need adapted psychosocial support. The assumption that children with ID might not understand death and dying can lead to limited support. Little is known about psychosocial support in pediatric palliative care around death, dying, and grief for this population. The study aimed to capture professionals' experiences in supporting children with ID in pediatric palliative care around topics of death, dying, and grief. Seven professionals who worked in pediatric palliative care in Germany were interviewed utilizing a qualitative research approach with semi-structured interviews. Inductive thematic analysis was used, and three major themes were identified: Communication about death and dying involves both verbal and non-verbal means, Child-centered interventions are employed to enhance the child's well-being, and Personal factors of involved individuals influence the support provision. The provided support was highly individualized to children's needs. Communication difficulties were identified as a challenge for professionals when providing psychosocial support for children with ID. Children's health condition and functioning, parents' beliefs, and professionals' attitudes towards ID and uncertainty about children's needs were identified as crucial factors influencing support provision for children with ID. The need for further research was highlighted.

Bakgrund När ett barn är svårt sjuk kan pediatrisk palliativ vård vara en lämplig vårdform. Den palliativa vården fokuserar på att lindra när tillståndet inte går att vårda kurativt och bota och är en total omvårdnad av barnet och föräldrarna både fysiskt och psykiskt. Sjuksköterskans jobb inom den pediatriska palliativa vården innebär att vårda barn och familj, och bygga en relation till båda. Sjuksköterskan ska arbeta för att göra föräldrar delaktiga och hjälpa till att stötta när det behövs. Teorin om Personcentrerad omvårdnad betonar även relationsbygget mellan sjuksköterska och patient samt familj för att främja patientens och föräldrars delaktighet i omvårdnaden. Syfte Syftet var att beskriva föräldrars upplevelse av delaktighet inom pediatrisk palliativ vård. Metod Denna litteraturöversikt har varit icke-systematisk och de 15 inkluderade originalartiklarna har varit av både kvalitativ, kvantitativ samt mixad metod. Sökningar efter artiklar har gjorts i PubMed och CINAHL och de valda artiklarna har kvalitetsgranskats enligt Sophiahemmet Högskolas bedömningsunderlag. Datan har analyserats med hjälp av en integrerad dataanalys. Resultat Sammanställningen av resultatet har genererat tre huvudteman; delaktighet genom tvåvägskommunikation, delaktighet genom beslutsfattande, samt delaktighet genom närvaro i vården. Samtliga studier visade att föräldrar har ett behov av tillräcklig information från sjuksköterska och annan vårdpersonal för att de skulle kunna vara delaktiga i barnets vård. När föräldrar fick informationen de behövde och ville ha, minskade ångest och oro, samtidigt som viljan och möjligheten för delaktighet ökade. Slutsats Litteraturöversikten har visat att föräldrar vill vara delaktiga i sitt barns vård till olika grad. Sjuksköterskan behöver arbeta personcentrerat för att säkerställa att alla barn och föräldrar får vara delaktiga på det sättet som de önskar. När vården är personcentrerad ökar dess kvalitet samt graden av nöjdhet hos patienter och föräldrar. / Background When a child is seriously ill, a suitable form of care could be pediatric palliative care, which focuses on providing relief when the illness can’t be treated curatively. It is a form of total care of the child and the parents both physically and mentally. The nurse’s job within the pediatric palliative care is to treat and build a relationship with the child and the family. The nurse should promote parent participation and help and support when it is needed. The theory of person-centered care emphasizes the relationship between nurse and patient as well as family in order to promote participation in nursing care. Aim The aim was to describe parents’ experience of participation in nursing care in the pediatric palliative care. Method This literature study was non-systematic and the 15 original articles included were of qualitative, quantitative and mixed methods. The searches for articles were made in the databases PubMed and CINAHL and the articles were quality checked according to Sophiahemmet University’s assessment basis. The data was analyzed with an integrated review method. Results The results generated three main themes; participation through two-way communication, participation through decision-making, and participation through presence in the care. All studies showed that parents have a need for sufficient information from nurses and other healthcare personnel in order for them to be able to participate in the child’s care. When parents received the information that they needed, anxiety and worry decreased, while willingness and opportunity to participate increased. Conclusions This literature study showed that parents wanted to be involved in their child’s care to varying degrees. The nurse has to work person-centered to make sure that children and parents can be involved in the way they wish. When care is person-centered, its quality increases and the degree of satisfaction increases.

Bakgrund: Vård av barn i palliativt skede upplevs påfrestande och emotionellt tungt. Det är en vårdform som kräver trygg personal och tydliga riktlinjer vilket tidigare forskning visat att sjuksköterskor kan uppleva sig sakna. Detta trots att sjuksköterskans centrala roll då barn vårdas palliativt i livets slutskede medger möjlighet att göra skillnad för barn och familj. Syfte: Syftet med studien var att belysa hur sjuksköterskor upplever det att vårda barn palliativt i livets slutskede. Metod: Data samlades in via semistrukturerade intervjuer som genomfördes digitalt med sjuksköterskor (n=11) som rekryterats via bekvämlighets- och snöbollsurval varefter data analyserades enligt metoden för kvalitativ innehållsanalys. Resultat: Analysen resulterade i identifiering av fyra kategorier som belyser sjuksköterskors upplevelser av att vårda barn palliativt i livets slutskede: Känslan av att inte räcka till, Känslan av att bli personligt involverad, Känslan av att vara förberedd och Känslan av ett fungerande team. Konklusion: Om än det upplevdes känslomässigt påfrestande att vårda barn palliativt i livets slutskede så övervägde känslan av att ha gjort skillnad vilket sjuksköterskorna upplevde givande. Det var känslomässigt påfrestande att acceptera att ett barn skulle behöva dö och när känslan av att inte räcka till infann sig försvårades vårdandet om något än mer. Det som gjorde det hela uthärdligt var privilegiet att få göra barnets sista tid så fin som möjligt och därmed bidra med något meningsfullt. / Background: Palliative care of children is a arduous and weary experience. It is a kind of care that requires secure personnel and clear guildelines, which previous research has shown that some nurses feel are lacking. This despite that being a nurse in the palliative care of children in the end of life m­­akes it possible to make a difference for both the child and the family. Purpose: The purpose of this study was to illustrate how nurses experience palliative care of children in the end of life. Method: Data was collected via semi-structured interviews performed digitally with nurses (n=11) that were recruited via convenience- and snowball sampling. The data was then analysed using the method for qualitative content analysis. Results: The analysis resulted in identifying four categories that illuminates nursers experience of palliative care of children in the end of life; the Feeling of not being able to do enough, the Feeling of getting personally involved, the Feeling of being prepared and the Feeling of a working team. Conclusion: Though it was emotionally wearing to care for children palliatively in the end of life, it was also rewarding to have made a difference. It was emotionally straining to accept that a child would have to die and the feeling of not being able to do enough complicated the care further. What made it more bearable was the privilege of being able to make the childs final time as pleasant as possible and thereby contribute to something meaningful.

Bakgrund: I världen är det mer än 21 miljoner barn i behov av palliativ vård, varav 550 i Sverige. Pediatrisk palliativ vård (PPV) fokuserar på att förbättra livskvaliteten hos det svårt sjuka barnet och barnets föräldrar. Att vara förälder till barn i palliativ vård är en svår situation. Syfte: Syftet med litteraturstudien var att beskriva föräldrars upplevelser av att leva med barn i behov av palliativ vård. Metod: Litteraturstudien är baserad på tio kvalitativa intervjustudier som granskades och analyserades. Artikelsökning skedde i vetenskapliga databaserna Cinahl, PubMed och Scopus. Resultat: Studiernas resultat analyserades och resulterade i två huvudkategorier och åtta underkategorier. Huvudkategorierna blev En förändrad vardag och Betydelsen av interaktion med vårdpersonal. I litteraturstudiens resultat framkommer föräldrars behov och emotionella reaktioner när deras barn vårdas palliativt. Konklusion: Barn i behov av palliativ vård till följd av obotlig sjukdom påverkar föräldrarna välbefinnande negativt. I mötet med föräldrar behöver sjuksköterskan möta varje enskild förälders behov för att kunna skapa förutsättningar för att bibehålla hälsa och välbefinnande. / Background: There are more than 21 million children in need of palliative care worldwide, including 550 in Sweden. Paediatric palliative care (PPC) focuses on improving the quality of life of the seriously ill child and the child's parents. It is a difficult situation to be the parent of a child who is in palliative care. Aim: The aim of the literature review was to describe parents' experiences of living with children who require palliative care. Methods: The literature study is based on ten qualitative interview studies that were reviewed and analysed. Articles were searched in the scientific databases Cinahl, PubMed and Scopus. Results: The results of the studies were analysed and resulted in two main categories and eight subcategories. The main categories were A changed daily life and The importance of interaction with healthcare professionals. The results of the literature study reveal parents' needs and emotional reactions when their child needs palliative care. Conclusion: Children in need of palliative care due to terminal illness, negatively affect the parents' well-being. In the meeting with parents, the nurse needs to meet each individual parent's wishes to create conditions for maintaining health and well-being.

Background: Palliative care is a collaboration between several different professions with relatives and patients as a central point. Children need individualized care where the needs are based on the child’s situation. Nursing care includes the person from the time the person is born until they die. Aim: The aim of the study was to describe parents experiences of having a child who recives palliative care. Method: The study was a descriptive literature study where eleven articles were compiled with parents' experiences of having a child who receives palliative care. Result: The results of the 11 articles are presented in four main themes: Parents' perceived feelings of having a child in palliative care, Relationships, Communication and Choice of environmental setting for pediatric palliative care. Four sub-themes are presented: Family relationships, healthcare staff and parent under Relationships and hospital and home health care under Choice of environmental setting for pediatric palliative care. Conclusion: Relatives are different and have different needs. It is therefore important that nurses work person-centred around both the patient and relatives, and listen to parents' wishes and needs. / Introduktion: Palliativ vård är ett samarbete mellan flera yrkesgrupper med närstående och patient som central utgångspunkt. Barn behöver en individanpassad vård där behoven utgår från barnets situation. Omvårdnad inkluderar personen från att personen föds till att de dör. Syfte: Litteraturstudiens syfte var att beskriva föräldrars erfarenheter och upplevelser av att ha ett barn som får palliativ vård. Metod: Studien är en beskrivande litteraturstudie där 11 artiklar har sammanställts med föräldrars erfarenheter och upplevelser av att ha ett barn som får palliativ vård. Resultat: Resultat: De elva artiklarna presenteras i fyra huvudteman: Föräldrars upplevda känslor av att ha ett barn i palliativ vård, relationer, kommunikation och valet av miljö för pediatrisk palliativ vård. Fyra underteman presenteras: Familjerelationer, sjukvårdpersonal och förälder under Relationer och sjukhus och hemsjukvård under Valet av miljö för pediatrisk palliativ vård. Slutsats: Anhöriga är olika och har olika behov. Det är därför av vikt att sjuksköterskor arbetar personcentrerat runt både patienten och anhöriga och lyssnar på föräldrars önskemål och behov.

Bakgrund: Den palliativa vården ska se till hela familjens behov av stöd. Lagen är tydlig vad gäller barns rättigheter när en förälder är sjuk, men syskon som grupp blir ofta förbisedda. Syskon som mist en närstående har ökad risk för ångest och depression, men löper även högre risk för missbruk, och detta kan relateras till hur syskonen upplevde situationen när deras bror eller syster var sjuk. Barn och unga är en särskilt sårbar grupp som behöver extra omsorg i och med en högre risk för komplicerad och långvarig sorg, och sjukvården har ett ansvar i att stötta dessa individer. Genom ökad kunskap om syskons erfarenheter av att leva med en svårt sjuk bror eller syster kan vi konstruera adekvat stöd baserat på deras behov. Syfte: Att beskriva syskons erfarenheter av att leva med en svårt sjuk bror eller syster. Metod: En litteraturöversikt baserad på 13 originalartiklar, insamlade från två databaser, publicerade mellan 2013–2023. En tematisk analys gjordes utifrån Braun och Clarkes analysmodell. Resultat: Tre huvudteman framkom vid sammanställning av resultat: Att hantera sig själv och sina känslor beskriver syskonens utsatthet och känsla av isolering - en känsla av att hamna i skuggan av sin bror eller systers sjukdom, där en stark önskan om att bli sedd, men en ovilja att ta plats framkom, och stöd från omgivningen var uppskattat. Känslan av förståelse beskriver att information och inkludering uppskattas - att de oftast vet om när saker går osagda och att de själva tvingas läsa mellan raderna kring vad de ser och vad som sägs. Det nya normala beskriver förändring i situation och vardag - där familjen blev allt viktigare, men att rollerna inom familjen förändrades, och det ständigt fanns en närvaro av oro kring den sjuka brodern eller systern. Slutsats: Sjuksköterskor och annan vårdpersonal bör känna till och beakta syskons känsloliv och önskningar för att på bästa sätt kunna stötta och hjälpa syskonet genom den svåra tiden. För att nå upp till barnkonventionen, som numera är lag, gäller detta även för sjukvårdspersonal inom vuxenvården, då barn som har palliativa vårdbehov många gånger vårdas inom vuxenkliniker. / Background: Palliative care must take care of the entire family's need for support. The law is clear regarding children's rights when a parent is ill, but siblings as a group are often overlooked. Siblings who have lost a loved one have an increased risk of anxiety and depression, but are also at higher risk of substance abuse, and this can be related to how the sibling experienced the situation when their brother or sister was ill. Children and young people are a particularly vulnerable group that needs extra care due to a higher risk of complicated and prolonged grief, and the healthcare system has a responsibility to support these individuals. Through increased knowledge of siblings' experiences of living with a seriously ill brother or sister, we can construct adequate support for these children based on their needs.  Aim: To describe the siblings' experiences of living with a seriously ill brother or sister. Method: A literature review based on 13 original articles, collected from two databases, published between 2013-2023. A thematic analysis was made based on Braun and Clarke's analysis model. Results: Three main themes emerged when compiling results: Dealing with oneself and one's feelings - describes the sibling's vulnerability and sense of isolation, a feeling of being overshadowed by their brother or sister's illness, where a strong desire to be seen, but an unwillingness to take place emerged, and support from the environment was appreciated. The feeling of understanding - describes that information and inclusion are appreciated, that they usually know when things are left unsaid and that they themselves are forced to read between the lines regarding what they see and what is said. The new normal - describes a change in situation and everyday life, where the family became increasingly important, but the roles within the family changed, and there was a constant presence of concern around the sick brother or sister. Conclusion: Nurses and other healthcare personnel should know and consider the sibling's emotional life and wishes in order to best support and help the sibling through the difficult time. In order to meet the Convention on the Rights of the Child, which is now law, this also applies to healthcare staff in adult care, as children who have palliative care needs are often cared for in adult clinics.

Bakgrund: Den palliativa vården ska se till hela familjens behov av stöd. Lagen är tydlig vad gäller barns rättigheter när en förälder är sjuk, men syskon som grupp blir ofta förbisedda. Syskon som mist en närstående har ökad risk för ångest och depression, men löper även högre risk för missbruk, och detta kan relateras till hur syskonen upplevde situationen när deras bror eller syster var sjuk. Barn och unga är en särskilt sårbar grupp som behöver extra omsorg i och med en högre risk för komplicerad och långvarig sorg, och sjukvården har ett ansvar i att stötta dessa individer. Genom ökad kunskap om syskons erfarenheter av att leva med en svårt sjuk bror eller syster kan vi konstruera adekvat stöd baserat på deras behov. Syfte: Att beskriva syskons erfarenheter av att leva med en svårt sjuk bror eller syster. Metod: En litteraturöversikt baserad på 13 originalartiklar, insamlade från två databaser, publicerade mellan 2013–2023. En tematisk analys gjordes utifrån Braun och Clarkes analysmodell. Resultat: Tre huvudteman framkom vid sammanställning av resultat: Att hantera sig själv och sina känslor beskriver syskonens utsatthet och känsla av isolering - en känsla av att hamna i skuggan av sin bror eller systers sjukdom, där en stark önskan om att bli sedd, men en ovilja att ta plats framkom, och stöd från omgivningen var uppskattat. Känslan av förståelse beskriver att information och inkludering uppskattas - att de oftast vet om när saker går osagda och att de själva tvingas läsa mellan raderna kring vad de ser och vad som sägs. Det nya normala beskriver förändring i situation och vardag - där familjen blev allt viktigare, men att rollerna inom familjen förändrades, och det ständigt fanns en närvaro av oro kring den sjuka brodern eller systern. Slutsats: Sjuksköterskor och annan vårdpersonal bör känna till och beakta syskons känsloliv och önskningar för att på bästa sätt kunna stötta och hjälpa syskonet genom den svåra tiden. För att nå upp till barnkonventionen, som numera är lag, gäller detta även för sjukvårdspersonal inom vuxenvården, då barn som har palliativa vårdbehov många gånger vårdas inom vuxenkliniker. / Background: Palliative care must take care of the entire family's need for support. The law is clear regarding children's rights when a parent is ill, but siblings as a group are often overlooked. Siblings who have lost a loved one have an increased risk of anxiety and depression, but are also at higher risk of substance abuse, and this can be related to how the sibling experienced the situation when their brother or sister was ill. Children and young people are a particularly vulnerable group that needs extra care due to a higher risk of complicated and prolonged grief, and the healthcare system has a responsibility to support these individuals. Through increased knowledge of siblings' experiences of living with a seriously ill brother or sister, we can construct adequate support for these children based on their needs. Aim: To describe the siblings' experiences of living with a seriously ill brother or sister. Method: A literature review based on 13 original articles, collected from two databases, published between 2013-2023. A thematic analysis was made based on Braun and Clarke's analysis model. Results:Three main themes emerged when compiling results: Dealing with oneself and one's feelings - describes the sibling's vulnerability and sense of isolation, a feeling of being overshadowed by their brother or sister's illness, where a strong desire to be seen, but an unwillingness to take place emerged, and support from the environment was appreciated. The feeling of understanding - describes that information and inclusion are appreciated, that they usually know when things are left unsaid and that they themselves are forced to read between the lines regarding what they see and what is said. The new normal - describes a change in situation and everyday life, where the family became increasingly important, but the roles within the family changed, and there was a constant presence of concern around the sick brother or sister. Conclusion: Nurses and other healthcare personnel should know and consider the sibling's emotional life and wishes in order to best support and help the sibling through the difficult time. In order to meet the Convention on the Rights of the Child, which is now law, this also applies to healthcare staff in adult care, as children who have palliative care needs are often cared for in adult clinics.