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.

A dor é um evento estressante para crianças e adolescentes e pode ter consequências negativas fisiológicas, psicológicas e comportamentais ainda mais quando é acompanhada por uma doença crônica, sem possibilidades de cura. Nesse sentido, o Cuidado Paliativo Pediátrico é uma filosofia de cuidado que deve ser instituída desde o diagnóstico da doença até que esta não responda mais às intervenções curativas. Assim, o foco do cuidado passa a ser a maximização da qualidade de vida que a criança e o adolescente e seus familiares necessitam, enquanto o sofrimento e a dor são minimizados. Considerando-se o caráter único da experiência de dor da criança e do adolescente, em cuidados paliativos, optou-se por desenvolver um estudo com abordagem qualitativa. Utilizamos como referencial teórico a Teoria de Desenvolvimento Cognitivo de Piaget e, como referencial metodológico, a História Oral. Tais referenciais são fundamentais para ancorar os resultados encontrados neste estudo e responder ao objetivo geral de conhecer a experiência da criança e do adolescente em cuidados paliativos no manejo diário da dor e aos objetivos específicos de conhecer como a criança e o adolescente em cuidados paliativos descrevem a intensidade, a qualidade e a localização da dor e de conhecer como a criança e o adolescente em cuidados paliativos manejam a dor em seu cotidiano. Permitem, igualmente, que crianças e adolescentes, de 6 a 17 anos 11 meses e 29 dias, portadores de uma doença crônica que causava dor e que estavam em cuidados paliativos e matriculados em um Ambulatório de Dor e Cuidados Paliativos de um Hospital Escola Pediátrico de caráter público de nível terciário tenham voz. Crianças em idade escolar descreveram sua dor a partir de componentes sensoriais e avaliativos. Os adolescentes, por outro lado, expressaram sua dor utilizando componentes sensoriais, avaliativos, afetivos e de miscelânea. Dos seis colaboradores deste estudo, cinco ainda frequentam a escola e relacionam-se com crianças e adolescentes da mesma faixa etária. Todos os colaboradores fazem uso de medicamentos e de alternativas não farmacológicas para o alívio da dor, como massagem, hidroterapia, acupuntura e crioterapia, constatando melhora em sua dor. Alguns colaboradores precisam lidar com sua aparência física prejudicada pela doença. Apesar da dificuldade de se entrevistar crianças e adolescentes, percebemos que eles têm muito a dizer e a nos ensinar, principalmente como eles lidam com a dor em seu cotidiano. Este trabalho é importante para que os profissionais de saúde compreendam que, com um adequado manejo da dor, crianças e adolescentes conseguem ter uma vida mais próxima da normalidade, reduzindo seu sofrimento. / Pain is a stressful event for children and adolescents and can have negative consequences - physiological, psychological and behavioral ones even more when it is accompanied by a chronic disease with no possibility of cure. In this context, the Pediatric Palliative Care is a philosophy of care that must be instituted from the diagnosis until the illness no longer responds to curative interventions. Therefore, the focus of care is to provide the highest quality of life possible to children and adolescents and their families while minimizing suffering and pain. Considering the uniqueness of the experience of pain in children and adolescents in palliative care, we chose to develop a qualitative study. We used the Theory of Cognitive Development Piaget as theoretical framework and the Oral History as the methodological one. Such references are essential to support the results found in this study and to address the overall objective of knowing the experience of the child and adolescent in palliative care for the daily management of pain as well as the specific goals of knowing how the children and adolescents in palliative care describe the intensity, quality and location of pain and of knowing how children and adolescents in palliative manage pain in their daily lives. Moreover, these frameworks allow that children and adolescents (from 6 to 17 years 11 months and 29 days), suffering from a chronic disease that caused pain and in palliative care and who were enrolled in an Outpatient Pain and Palliative Care of a public tertiary Pediatric Teaching Hospital character, have a voice. School children described their pain using sensory and evaluative components. Teenagers, on the other hand, expressed their pain using sensory, evaluative, affective and miscellaneous ones. Of the six collaborators to this study, five are still in school and relate to children and adolescents of the same age. All collaborators use drugs and non-pharmacological alternatives for pain relief such as massage, hydrotherapy, acupuncture and cryotherapy, reporting improvement in their pain. Some collaborators need to deal with their physical appearance which is affected by the disease. Despite the difficulty of interviewing children and teenagers, we have realized that they have a lot to say and to teach us, especially with regard to how they deal with pain in their daily lives. The present work is important for health professionals to understand that, with adequate pain management, children and adolescents can live a life as normal as possible, thus reducing their suffering.

No description available.

A dor é um evento estressante para crianças e adolescentes e pode ter consequências negativas fisiológicas, psicológicas e comportamentais ainda mais quando é acompanhada por uma doença crônica, sem possibilidades de cura. Nesse sentido, o Cuidado Paliativo Pediátrico é uma filosofia de cuidado que deve ser instituída desde o diagnóstico da doença até que esta não responda mais às intervenções curativas. Assim, o foco do cuidado passa a ser a maximização da qualidade de vida que a criança e o adolescente e seus familiares necessitam, enquanto o sofrimento e a dor são minimizados. Considerando-se o caráter único da experiência de dor da criança e do adolescente, em cuidados paliativos, optou-se por desenvolver um estudo com abordagem qualitativa. Utilizamos como referencial teórico a Teoria de Desenvolvimento Cognitivo de Piaget e, como referencial metodológico, a História Oral. Tais referenciais são fundamentais para ancorar os resultados encontrados neste estudo e responder ao objetivo geral de conhecer a experiência da criança e do adolescente em cuidados paliativos no manejo diário da dor e aos objetivos específicos de conhecer como a criança e o adolescente em cuidados paliativos descrevem a intensidade, a qualidade e a localização da dor e de conhecer como a criança e o adolescente em cuidados paliativos manejam a dor em seu cotidiano. Permitem, igualmente, que crianças e adolescentes, de 6 a 17 anos 11 meses e 29 dias, portadores de uma doença crônica que causava dor e que estavam em cuidados paliativos e matriculados em um Ambulatório de Dor e Cuidados Paliativos de um Hospital Escola Pediátrico de caráter público de nível terciário tenham voz. Crianças em idade escolar descreveram sua dor a partir de componentes sensoriais e avaliativos. Os adolescentes, por outro lado, expressaram sua dor utilizando componentes sensoriais, avaliativos, afetivos e de miscelânea. Dos seis colaboradores deste estudo, cinco ainda frequentam a escola e relacionam-se com crianças e adolescentes da mesma faixa etária. Todos os colaboradores fazem uso de medicamentos e de alternativas não farmacológicas para o alívio da dor, como massagem, hidroterapia, acupuntura e crioterapia, constatando melhora em sua dor. Alguns colaboradores precisam lidar com sua aparência física prejudicada pela doença. Apesar da dificuldade de se entrevistar crianças e adolescentes, percebemos que eles têm muito a dizer e a nos ensinar, principalmente como eles lidam com a dor em seu cotidiano. Este trabalho é importante para que os profissionais de saúde compreendam que, com um adequado manejo da dor, crianças e adolescentes conseguem ter uma vida mais próxima da normalidade, reduzindo seu sofrimento. / Pain is a stressful event for children and adolescents and can have negative consequences - physiological, psychological and behavioral ones even more when it is accompanied by a chronic disease with no possibility of cure. In this context, the Pediatric Palliative Care is a philosophy of care that must be instituted from the diagnosis until the illness no longer responds to curative interventions. Therefore, the focus of care is to provide the highest quality of life possible to children and adolescents and their families while minimizing suffering and pain. Considering the uniqueness of the experience of pain in children and adolescents in palliative care, we chose to develop a qualitative study. We used the Theory of Cognitive Development Piaget as theoretical framework and the Oral History as the methodological one. Such references are essential to support the results found in this study and to address the overall objective of knowing the experience of the child and adolescent in palliative care for the daily management of pain as well as the specific goals of knowing how the children and adolescents in palliative care describe the intensity, quality and location of pain and of knowing how children and adolescents in palliative manage pain in their daily lives. Moreover, these frameworks allow that children and adolescents (from 6 to 17 years 11 months and 29 days), suffering from a chronic disease that caused pain and in palliative care and who were enrolled in an Outpatient Pain and Palliative Care of a public tertiary Pediatric Teaching Hospital character, have a voice. School children described their pain using sensory and evaluative components. Teenagers, on the other hand, expressed their pain using sensory, evaluative, affective and miscellaneous ones. Of the six collaborators to this study, five are still in school and relate to children and adolescents of the same age. All collaborators use drugs and non-pharmacological alternatives for pain relief such as massage, hydrotherapy, acupuncture and cryotherapy, reporting improvement in their pain. Some collaborators need to deal with their physical appearance which is affected by the disease. Despite the difficulty of interviewing children and teenagers, we have realized that they have a lot to say and to teach us, especially with regard to how they deal with pain in their daily lives. The present work is important for health professionals to understand that, with adequate pain management, children and adolescents can live a life as normal as possible, thus reducing their suffering.

This study aimed to investigate the role, possibilities, challenges and emotional labor of Healthcare Counselors in pediatric palliative care. Through semi-structured interviews with five counselors, a thematic analysis was conducted. The findings reveal a broad and dynamic role, partially unclear, allowing individual shaping. Additionally, the study highlights counselors' capacity to support families during severe crises and discussions about end-of-life matters. The work is both meaningful and emotionally challenging, and coping theory illustrates how counselors manage their emotions using problem-focused and emotional coping strategies. The conclusions emphasize the relevance for counselors, collaboratingprofessions and management in pediatric palliative care.