Bakgrund: Barnsjukvården bedrivs idag på ett sätt som inkluderar hela familjen i omvårdnaden. Det är viktigt att öka förståelsen för de känslor och behov som föräldrar till sjuka barn upplever vid de tillfällen då deras barn vistas på sjukhus, eftersom sjuksköterskan som omvårdnadsansvarig ska kunna möta och tillgodose dessa behov. Syfte: Att genom en litteraturstudie undersöka föräldrars behov och upplevelser av deras barns sjukhusvistelse. Artiklar söktes i databaserna CINAHL och PubMed och analyserades enligt Graneheim & Lundmans kvalitativa innehållsanalys. Tre teman identifierades relaterat till föräldrars behov: Miljö, Psykosocialt och Kommunikation. Fyra teman identifierades relaterat till upplevelser: Miljö, Psykosocialt, Kommunikation och Relationer. Resultat: Det framkom att föräldrar upplevde sjukhusvistelse som påfrestande. Miljön upplevdes främmande och annorlunda och i denna var föräldrar sårbara och känsliga. Föräldrar hade ett uttalat behov av att vara nära sitt barn och ville att sjuksköterskan skulle vara ärlig och omsorgsfull i omvårdnaden. De hade behov av en personlig relation med sjuksköterskan och behövde vägledning och stöd i beslut. Föräldrar behövde uppmuntras för att inte tappa hoppet i situationer som kändes hopplösa och sökte bekräftelse när dem upplevde skuldkänslor för barnets sjukdom. Vad föräldrar behöver varierarde beroende på förutsättningar och situation, men den generella uppfattningen var att dem upplevde sina behov otillfredsställda. / Background: Child health care in Sweden is currently carried out in a way that includes the whole family, therefore it’s important to increase understanding of the feelings and needs that parents of hospitalized children experience to enable the nurse to meet and satisfy these needs. Aim: Thru a literature review examine parents' needs and experiences of their child's hospitalization. Articles were searched in the databases CINAHL and PubMed, and analysed according to Graneheim & Lund 's qualitative content analysis. Three themes were identified related to parents' needs: Environment, Psychosocial and Communication. Four themes were identified related to the experiences: Environment, Psychosocial, Communication and Relationships. Result: Parents experienced hospitalization as strenuous. The environment felt strange and different and parents were vulnerable and sensitive. Parents had a need to be near their child and wanted the nurse to be honest and diligent in his or her care. They had need for a personal relationship with the nurse, guidance and support. Parents needed to be encouraged not to lose hope in situations that seemed hopeless, and sought confirmation when they experienced feelings of guilt for their child's illness. What parents need varied depending on circumstances and situation, but the general opinion was that they felt their needs were unmet.

Background: Every year, hundreds of children are diagnosed with cancer. This affects the whole child's family, which means that the nurse during the child's cancer care must be there to support the whole family. The parent needs to feel involved in the child's care and have a trusting relationship with the nurse. As a parent, you have to go through a great deal of suffering, which requires the nurse to adapt her support to the needs of the parent and the child. Aim: The purpose of this study was to shed light on how a parent with a child with cancer experiences the nurse's support during and after cancer care. Method: A literature-based study was conducted. Ten qualitative articles were selected and analyzed, based on Friberg's analysis step model. This participates in three categories and a total of eight subcategories. Results: The results showed that the nurse's support was an important factor in an attempt to reduce the parent's suffering. This support could be divided into three categories: Cooperation between nurse and parent, parent's need for support and accessibility and communication. Conclusion: Pediatric cancer affects the whole child's family, and the parent is in great need of support to deal with their suffering and at the same time support their child. During their child’scancer care, the parent goes through many feelings of no longer recognizing their own child, as well as being helpless in their parenting role. By the nurse working in an empathetic and inclusive way where there is an opportunity to build meaningful and strengthening relationships between the parent and the nurse and that the parent's needs are also met, the parent's suffering can be reduced with the help of the nurse's support.

Bakgrund I Sverige drabbas tusentals människor av hjärtstopp årligen, och dessa omhändertas inom akutsjukvården. Den vanligaste orsaken till hjärtstopp är hjärtinfarkt. För att rädda deras liv genomförs hjärt- och lungräddning (HLR). Ett perspektiv till situationen är de närstående och deras närvaro under HLR. Personalen upplever bland annat att de närstående kan vara i vägen och ett stressmoment. Däremot upplever de också att de kan stärka bandet mellan varandra när de närvarar. Den teoretiska utgångspunkten för studien var familjecentrerad vård och det syftar till att involvera de närstående och även ge dessa omvårdnad. Syftet var att belysa närståendes upplevelse av att ha närvarat vid HLR inom akutsjukvården och hur detta har påverkat de närstående efteråt. Metod Studien har genomförts som en icke-systematisk litteraturöversikt med systematisk sökmetod. Totalt har 15 artiklar inkluderats varav 10 var kvalitativa och fem var kvantitativa. De analyserades med en integrerad innehållsanalys. Resultatet fick fyra huvudkategorier vilka var Känslor under hjärt- och lungräddning, Delaktighet, Information samt Livet efter. Ur dessa har 10 underkategorier tagits fram. Dessa var Trygghet, förståelse, negativa känslor, vårdpersonalens roll, närståendes roll, valmöjlighet, tydlig information, bristen på information, positiva känslor efter samt negativa känslor efter. Studien kom fram till att det under HLR finns många känslor både positiva och negativa och att de närstående upplevde att stöd från vårdpersonalen var viktigt. Dessutom framkom det att informationen var en central del för att minska ångest och öka känslan av trygghet och hopp. Slutsatserna från studien är att de närstående upplever många känslor när de bevittnar HLR, de kan vara positiva eller negativa känslor. Dessutom önskar de närstående att de får stöd och att de önskar få valmöjligheten att vara delaktiga. Även efter situationen känner de många känslor. / Background In Sweden, thousands of people suffer from cardiac arrest every year, and these are dealt with in emergency medical care. The most common cause of cardiac arrest is heart attack. To save their lives, cardiopulmonary resuscitation (CPR) is performed. One perspective to the situation is the relatives and their presence during CPR. The staff experiences, among other things, that the relatives can be in the way and are a moment of stress. However, they also feel that they can strengthen the bond between the staff and the relatives when they attend. The theoretical framework for the study was family-centered care which aims to involve the next of kin and also provide them with care. The aim was to shed light on the relatives' experience of having been present during CPR in emergency healthcare and how this has affected the relatives afterwards. Method The study has been carried out as a non-systematic literature review with a systematic search method. A total of 15 articles have been included, of which 10 were qualitative and five were quantitative. They were analyzed using an integrated content analysis. Results The results received four main categories, which were Feelings during cardiopulmonary resuscitation, Participation, Information and Life after. From these, 10 subcategories have been developed. These were Safety, understanding, negative feelings, the role of the care staff, the role of relatives, choice, clear information, the lack of information, positive feelings after and negative feelings after. The study concluded that during CPR there are many emotions, both positive and negative, and that the relatives felt that the support of the healthcare staff was important. In addition, it emerged that the information was a central part of reducing anxiety and increasing the feeling of security and hope. The Conclusions from the study is that the relatives experience many emotions when they witness CPR, they can be positive or negative emotions. In addition, the relatives wish that they receive support and that they wish to be given the choice to participate. Even after the situation, they feel many emotions that will affect them.

Bakgrund Under de senaste årtiondena har synen på familjen genomgått en betydande förändring, där traditionella normer gradvis har ersatts av en mångfald av familjekonstellationer. Samtidigt har betydelsen av familjecentrerad omvårdnad ökat inom hälso- och sjukvården, där sjuksköterskor spelar en central roll i att integrera familjens perspektiv och erfarenheter i vårdprocessen. Särskilt inom neonatalvården där föräldrar och spädbarn står inför unika utmaningar vilket gör familjecentrerad omvårdnad särskilt relevant inom dessa verksamheter.  Syfte Syftet med denna litteraturstudie var att belysa föräldrars erfarenheter av familjecentrerad omvårdnad inom neonatalvården.   Metod En icke-systematisk litteraturöversikt genomfördes för att sammanställa relevant forskning inom ämnet. Totalt granskades 12 vetenskapliga artiklar som omfattade flera länder, inklusive England, Nederländerna, Italien, Japan, Danmark, Nya Zeeland, Indien och USA. Artiklarna analyserades med hjälp av integrerad analys. Resultat Resultatet delades in i två huvudkategorier: Erfarenheter av delaktighet samt Erfarenheter av stöd. Det framkom att föräldrar upplevde ökad känsla av kontroll och trygghet när de involverades i vården och de uppskattade stöd från vårdpersonal. Uppmuntran och handledning från sjuksköterskor bidrog till föräldrarnas självförtroende och förmåga att vårda sina spädbarn. Positiva interaktioner och hud-mot-hud betonades som betydelsefulla för anknytningen till spädbarnet. Även om utmaningar som bristande kommunikation och vårdmiljöns begränsningar identifierades, indikerade resultaten övergripande att familjecentrerad omvårdnad kan stärka föräldrarnas delaktighet och välbefinnande.  Slutsats Föräldrars erfarenheter av att känna delaktighet och stöttning i vårdprocessen verkar vara avgörande för deras välbefinnande och upplevelse av vården. Detta understryker betydelsen av att främja och stödja föräldrars aktiva engagemang inom vårdsammanhang, där sjuksköterskor spelar en central roll genom att aktivt involvera och stödja familjen. / Background Over recent decades, the perception of family has undergone a significant change, with traditional norms gradually being replaced by a diversity of family constellations. Concurrently, the importance of family-centered care has increased within healthcare, with nurses playing a central role in integrating the family's perspective and experiences into the care process. Particularly in neonatal care, where parents and infants face unique challenges, making family-centered care especially pertinent in these settings. Aim The aim of this literature review was to highlight parents' experiences of family-centered care in neonatal healthcare. Method A non-systematic literature review was conducted to compile relevant research on the topic. A total of 12 scientific articles were reviewed, encompassing several countries, including England, the Netherlands, Italy, Japan, Denmark, New Zealand, India and the USA. The articles were analyzed using integrated analysis. Results Findings were divided into two main categories: Experiences of involvement and Experiences of support. It was found that parents experienced increased sense of control and security when involved in the care and they appreciated support from nursing staff. Encouragement and guidance from nurses contributed to parents' confidence and ability to care for their infants. Positive interactions and skin-to-skin were emphasized as significant for bonding with the infant. Although challenges such as poor communication and limitations in the healthcare environment were identified, the results overall indicated that family-centered care can enhance parents' involvement and well-being. Conclusions Parents' experiences of feeling involved and supported in the care process seem to be crucial for their well-being and experience of care. This emphasizes the importance of promoting and supporting parents' active engagement in healthcare contexts, where nurses play a central role by actively involving and supporting the family.

Bakgrund: Familjecentrerad vård innebär att hela familjen inkluderas i vården. Målet är att säkerställa att familjen har nödvändiga förutsättningar för att engagera sig i vården. Det är viktigt att både patientens och familjens behov tillgodoses och att de känner sig trygga och väl omhändertagna av vårdpersonalen. Den familjecentrerade vården syftar till att underlätta sjuksköterskors arbete och stärka familjens förmåga att hantera hälsorelaterade utmaningar. Syfte: Att beskriva sjuksköterskors erfarenhet av familjecentrerad vård inom barn- och ungdomssjukvården. Metod: En beskrivande litteraturstudie med tematisk analys baserat på tio vetenskapliga artiklar med kvalitativ eller mixad metodik. Huvudresultat: Tre huvudkategorier och åtta underkategorier identifierades med fokus på relationer och samarbete, inkludering och engagemang samt organisatoriska aspekter. Analysen belyste hinder och faktorer som underlättar för familjecentrerad vård samt nyckelfaktorer för framgångsrik implementering och organisering. Det visade sig att ett bristande engagemang från såväl familjen som sjukvårdspersonal påverkar den familjecentrerade vården och möjligheten till tillfrisknande. Kulturella aspekter framkommer också och sjuksköterskor har erfarit att okunskap hindrat relationsbildandet men också förståelsen och tilliten till varandra. Slutsats: Denna litteraturstudie ämnar ge en djupare förståelse för ett familjecentrerat arbetssätt. Studien visar på utmaningar och möjligheter som kan komma att påverka leveransen och optimering av familjecentrerad vård. Föreliggande litteraturstudie påvisar också att goda relationer och ett respektingivande arbetssätt till familjer och kollegor leder till bättre bemötande, bättre kommunikation och en god möjlighet till att individanpassa vården. / Background: Family-centered care is supposed to ensures that the entire family is included in the care process. The goal is to ensure that the family has the conditions to engage in the care. It is important that both the patient’s and the family’s needs are met and that they feel secure and well taken care of by the nurses. Family-centered care aims to facilitate nurses' work and strengthen the family’s ability to handle health related difficulties. Purpose: To describe nurses' experience of family-centred care in child and youth healtcare. Method: A descriptive literature study with thematic analysis based on ten scientific articles with qualitative or mixed approaches. Main results: Three main categories and eight subcategories were identified focusing on relationships and collaboration, inclusion and commitment as well as organizational. The analysis highlighted barriers and facilitators for family-centered care, as well as key factors for successful implementation and organization. It was found that a lack of engagement from both the family and the nurses affects the family-centered care and the possibility of recovery. Cultural aspects also emerged, and nurses have experienced that ignorance hinders the formation of relationships but also understanding and trust in each other. Conclusion: This literature study aims to deepen the understanding of family-centered work and shows challenges and opportunities that may affect the delivery and optimization of family-centered care. The current literature study also shows that good relationships and a respectful way of working with families and colleagues lead to better treatment, better communication and a good opportunity to tailor care to the individual.

Background: Critical care is a relatively young speciality with its intention to treat critical illness equally all around the world. Patients admitted to ICUs receive advanced treatments in order to save lives, however some patients will pass away during critical care, which put family members in great physical and emotional distress. It is important to support family needs and keep core principles of palliative care in mind in order for patients and family members to cope with current situation. The need for palliative care is greater than ever, but in most parts of the world it is poorly developed. Brazil struggles with several challenges regarding implementation of a palliative approach within ICU settings. Aim: the aim was to explore nurses’ experiences of palliative care, focusing on family involvement in Brazilian ICUs. Method: semi-structured interviews were analysed using content analysis. Five female nurses were included from one public and one private hospital in the city of Rio de Janeiro, with an average ICU working experience of nine years. Results: three main categories were identified describing nurses’ experiences of palliative care and family involvement: to care for a dignified death, to promote family involvement and areas for future improvement. Discussion: the results reveal that the nurses, even though lack of professional training, believe that palliative care is important for both patient and their family members at the EOL. Brazilian nurses also face several challenges in order to perform palliative care successfully within ICUs. They struggle with strict visiting policy and the perception of nurses being inferior to physicians. There is a wish for acknowledgement of the nursing profession during EOLC in Brazilian ICUs, since nurses spend most time at each patient’s bedside along with their family members.

Background: One in five households has a child with special health care needs (SHCN). Such parents report poorer mental health, greater depressive symptoms, and more restrictions in instrumental activities of daily living (IADL). The quality of mental and physical health of all family members' continuingly declines. Objectives: To evaluate the effects of the current ITK Healing Retreat Week program on familial well-being via introduction of CAM methods through assessment of 1) mood based on affect 2) self-efficacy 3) changes in coping skills 4) growth over time in parents/caregivers who have children with SHCN. Methods: A secondary analysis of data from sixteen parents/caregivers who participated in the ITK Healing Retreat Week July 13-19, 2014. Scores from Positive and Negative Affect Schedule (PANAS) with Serenity subscale, Post Traumatic Growth Inventory (PTGI), and Self-Efficacy Scale (SES) were analyzed using SPSS. Content analysis was performed on open-ended questions from post, three and six-month post retreat questionnaires. Results: Before to immediately after the retreat week there was a statistically significant decrease in negative emotions and increase in positive mood state, ability to feel calm/at peace, relate to others, see new possibilities, and confidence in ability to perform certain care needs (<.001). From post to three-month post retreat the families' confidence in ability to perform certain care needs did not change (<.001), but declined from three to six month post retreat in a statistically significant manner (.044). Content analysis indicated that the biggest benefit for the families was being in a supportive community and having an increase in positive emotional states. At six-months post retreat an increase in receptivity was additionally reported. Conclusion: The ITK Healing Retreat Week program positively impacted families who have children with SHCN in multiple positive ways: increased mood, more confidence, ability to relate better to others and ability to see new possibilities. In effort to make this program generalizable or even replicable, further research needs to be done on the mechanism of change, the structure that creates this change, and how to make such a change sustainable by investigating a new retreat format and alternative research tools, questions, and scales.

SAMMANFATTNING Syfte: Att studera föräldrars upplevelse av att kunna tolka sitt barns behov och mående samt upplevda kompetens i föräldrarollen efter att barnet har vårdats på neonatalavdelning. Metod: En jämförande kvantitativ studie med deskriptiv explorativ design som är en del av ett större projekt som genomförts vid två neonatalavdelningar i Sverige. En vecka efter barnets utskrivning från neonatalavdelningen samt vid två månaders korrigerad ålder fick barnets mamma och pappa varsin enkät, innehållande bland annat en föräldra-attitydskala, hemskickad. Insamlade data matades in i Statistical Package for the Social Sciences (SPSS) och redovisades med deskriptiv (md; median och range; minimum och maximum) och jämförande statistik (Chi-2-test och Mann-Whitney U-test). Resultat: En enda signifikant skillnad kunde ses mellan de två neonatalavdelningarna och det gällde föräldrarnas upplevelse att barnet tyckte om kontakt från dem i form av deras doft. På neonatalavdelning 2 svarade föräldrarna i högre grad att detta påstående stämde en vecka efter barnets utskrivning från neonatalavdelningen. Inga andra signifikanta skillnader ses vid jämförelsen av föräldrarnas enkätsvar från de två neonatalavdelningarna. Slutsats: Den enda signifikant skillnad som kunde ses anses av flera orsaker inte vara av särskilt hög betydelse. Följaktligen kan inga väsentliga skillnader ses mellan föräldrarnas upplevelse av sitt barns behov och mående samt upplevda kompetens i föräldrarollen beroende på om barnet vårdats på en neonatalavdelning där föräldrarna fick bo med sitt barn under hela vårdtiden och tidigt involveras i sitt barns vård eller om barnets vårdats på en neonatalavdelning med mindre föräldranärvaro. / ABSTRACT Aim: Studying parents' experience of being able to interpret their child's needs and well-being, and perceived competence in parenting after the child has been cared for in the neonatal unit. Method: A comparative quantitative study with a descriptive exploratory design that is part of a larger project conducted at two neonatal units in Sweden. A week after the child's discharge from the neonatal unit and at two months' corrected age, the child’s mother and father received a questionnaire sent to their home, containing among other things a parental attitude scale. Collected data were fed into the Statistical Package for the Social Sciences (SPSS) and presented with descriptive (md; median and range; minimum and maximum) and comparative statistics (Chi-2 test and Mann-Whitney U test). Results: Only one significant difference was seen between the two neonatal wards and it was regarding the parents' experience that the child enjoyed contact from them in terms of their fragrance. In the neonatal unit 2 parents agreed to a greater extent that this claim was true a week after the child's discharge from the neonatal unit. No other significant differences were seen when comparing the parents' questionnaire responses from the two neonatal wards. Conclusion: The only significant difference that was found was for several reasons not considered to be of very high importance. Consequently, no significant differences was found between the parents perception of their child's needs and well-being, and perceived competence in the parental role, depending on whether the child received care in a neonatal unit where the parents were allowed to stay with their child throughout the whole hospital stay and early get involved in their child's care or if the child was admitted to a neonatal unit with less opportunity for parental presence.

Autism spectrum disorders (ASDs) are chronic and pervasive developmental disorders; children with ASDs require more multidisciplinary services than children with other developmental, behavioral, and emotional disorders (Kogan et al., 2008). Little research has been done on the practices and perspectives of the professionals providing services to children with ASDs. Evidence-based practice (combining use of evidence-based interventions [EBIs], family-centered care [FCC] respecting patient/family values, and clinical expertise) leads to the best outcomes for children with ASDs (APA Presidential Task Force on Evidence-Based Practice, 2006). The aim of this study was to assess the extent to which psychological constructs (attitudes, subjective norms, perceived behavioral control) within the Theory of Planned Behavior (Ajzen, 1991) are helpful for understanding the behavior of professionals in regards to two areas of evidence-based practice: recommending and/or providing EBIs and using a FCC approach to care with children with ASDs. Professionals (N=709) providing direct services to children with ASDs were recruited from different disciplines (Education, Medicine/Nursing, Occupational and Physical Therapy, Psychology, Social Work, Speech Language Pathology/Audiology) and were asked to fill out an Internet or paper survey including measures on TPB constructs and EBI and FCC behavior. Participants were recruited from a convenience Internet sample and a stratified random sample of online provider listings (from professional and autism-specific organizations). Professionals’ attitudes and familiarity with EBIs significantly predicted their self-reported recommendation and provision of EBIs in the positive direction. Professionals’ attitudes, perceived-behavioral control, and years in practice significantly predicted self-reported use of an FCC approach with children with ASDs in the positive direction. There was a trend for explicit training on EBI or FCC to predict professionals’ behavior, but these findings did not reach conventional levels of significance. Subjective norms did not significantly predict EBI or FCC behavior. Discipline membership did not moderate the relationship between TPB and EBI and FCC self-reported behavior measures. The TPB is a useful framework for better understanding professionals’ evidence-based practice behavior. This study sheds light on practices and perspectives of professionals working with children with ASDs and highlights areas for future research and training with this population.

O propósito da pesquisa foi desvelar o fenômeno: a enfermeira no cuidado à família da criança hospitalizada. Este estudo de natureza qualitativa teve como objetivos: conhecer a vivência do enfermeiro no cuidado às famílias de crianças hospitalizadas em unidades pediátricas e apreender o típico da vivência dos enfermeiros em ações que envolvem este cuidado. Foi utilizado como referencial teórico filosófico a abordagem da Fenomenologia Social de Alfred Schütz. Foram realizadas entrevistas com 16 enfermeiras que atuavam em unidades de emergência pediátricas, terapia intensiva pediátrica e neonatal, berçário e unidade de internação de um hospital universitário da cidade de São Paulo, tendo como foco sua vivência no cuidado às familias de crianças hospitalizadas. A análise conduzida segundo a teoria motivacional de Schütz, possibilitou identificar o tipo vivido da enfermeira no cuidado à família da criança hospitalizada, que é apresentado em duas condutas motivacionais. Na primeira o cuidado da enfermeira é caracterizado por Incluir a família, pois para ela pensar na família é fundamental. Com isso, sente necessidade de atender às demandas da família durante a hospitalização e de aprimorar seus conhecimentos quanto à abordagem da família. Na segunda conduta, o cuidado da enfermeira se caracteriza por Engajar a família na assistência prestada à criança. Para ela a presença da família é importante, e a necessidade de integrar a família no cuidado e atender às demandas da criança são modos de garantir o cuidado futuro da criança. O estudo revelou que a experiência de cuidado à família da criança hospitalizada prestado pela enfermeira não é uniforme, a motivação ainda se dá como prática individual, conforme a bagagem de conhecimento e os propósitos de cada profissional. A implementação de um modelo de cuidado centrado na família, apresenta desafios que demandam superação, individual e institucional, para que também a família seja considerada como unidade de cuidado durante a hospitalização de um seus membros. / The purpose of this research was to reveal the phenomenon: the nurse in caring for families of hospitalized children. This qualitative study aimed to understand the experiences of nurses in caring for families of hospitalized children and learn the typical experience of nurses\' actions involving such care. It was used as a theoretical philosophical approach the Social Phenomenology of Alfred Schutz. Interviews were conducted with 16 nurses working in pediatric emergency, pediatric intensive care, newborn nursery and pediatric unit at a university hospital in São Paulo city, focusing on their experience in caring for families of hospitalized children. The analysis conducted according to the motivational theory of Schütz, enabled us to identify the experienced type of nurse in caring for families of hospitalized children, which is presented in two motivational behaviors. The first is characterized by Including family in care: the nurse think family as fundamental, needs to meet the demands of the family during hospitalization and improve knowledge to approach the family. The other is characterized by Engaging the family in care: for the nurse, the family presence is important and she needs to integrate the family in care and meet the demands of the child as a way of ensuring the future care of the child . The study revealed that nurses\' experience in caring for families of hospitalized children is not uniform, that motivation has emerged as solo practice, in accordance with the baggage of knowledge and purposes of each professional. The implementation of a family-centered care model, presents challenges to overcome, so that the family is considered as the unit of care during the hospitalization of one its members