Inom vården är familjecentrerad vård ett förhållningssätt att arbeta utefter, vilket innefattar hela familjen som enhet men även varje individ i enheten. Föräldrar till barn som vårdas inom intensivvården påverkas på flera sätt. Barnsjuksköterskan har en viktig funktion i att arbeta utifrån ett förhållningssätt som bidrar till delaktighet samt ett ansvar att arbeta utvecklande för verksamheten och utifrån evidensbaserad vård. För att kunna tillgodose hela enhetens behov är det av stor vikt att belysa föräldrars erfarenheter. Syfte: Syftet var att belysa föräldrars erfarenheter av att deras barn vårdats på en intensivvårdsavdelning. Metod: Studien genomfördes som systematisk litteraturstudie med induktiv ansats där 13 artiklar granskades och inkluderades. Artiklarna analyserades med kvalitativ innehållsanalys enligt Erlingsson & Brysiewicz. Resultat: Dataanalysen resulterade i nio kategorier. Föräldrarnas livssituation påverkades i flera olika avseende. Barnets vårdtid utlöste stressfaktorer och många olika känslor. Föräldrarna uttryckte vikten av god kommunikation från vårdpersonalen samt behovet av emotionellt och socialt stöd. Konklusion: Studiens resultat kan ge barnsjuksköterskor som arbetar inom intensivvård en ökad förståelse för föräldrarnas upplevelse av vårdtiden samt hur man kan öka användandet av familjecentrerad vård. En förbättrad användning kan förbättra hela familjens välbefinnande samt upplevelse av erhållen vård. / In healthcare, family-centered care is an approach to work towards, wichincludes the whole family as a unit but also everyone in the unit. Parents ofchildren who are cared for in intensive care are affected in several ways.Pediatric nurses have an important function in working based on anapproach that contributes to participation as well as a responsibility todevelop the organisation and to work based on evidence. In order to be ableto meet the needs of the entire unit, it is of great importance to highlightparents' experiences. Purpose: The purpose was to illustrate parents'experiences of their children being cared for in an intensive care unit.Method: The study was conducted as a systematic literature study withinductive approach where 13 articles were reviewed and included. Thearticles were analyzed with qualitative content analysis according toErlingsson & Brysiewicz. Results: The data analysis carried out in ninecategories. The parents’ situation in life was affected in several differentaspects. The child’s hospitalization triggered stress factors and manydifferent emotions. The parents expressed the importance of goodcommunication from the care staff and the need for emotional and socialsupport. Conclusion: The results of the study can give pediatric nurses whowork in intensive care an increased understanding of the parents' experienceof the period of care and how to increase the use of family-centered care. Animproved use can improve the whole family's well-being and experience ofthe care received.

Background: Childhood cancer drastically changes the lives of both the child and the family. Nurses play a key role in providing support and care. Family-centered care can facilitate listening to parents' needs and enable them to actively participate in their child's care. Aim: To describe parents' experiences of living with a child with cancer. Method: A literature study based on five autobiographies written by parents of children with cancer. Results: The parents' experience is characterized by their individual ability to implement strategies to cope with the challenges that their child's illness brings. Coping strategies could be divided into three subcategories: emotional management, practical problem-solving, and the impact of healthcare on the patient experience. Information and collaboration from the nurse affect the experience of care, and individualized nursing care was perceived as the best. Conclusion: Collaboration between healthcare and parents is crucial to enable the most effective management of the challenges that come with having a child with cancer. Healthcare workers needs to provide individualized support to ensure that parents feel well cared for, and in this way improve the experience of living with a child who has cancer. / Bakgrund: Barncancer innebär en drastisk förändring för både barnet och familjen. Sjuksköterskor har en central roll i att ge stöd och vård. Familjecentrerad omvårdnad kan underlätta för att lyssna på föräldrars behov och ge dem möjlighet att delta aktivt i barnets vård. Syfte: Att beskriva föräldrars upplevelser av att leva med ett barn med cancer. Metod: En litteraturstudie baserad på fem självbiografier skrivna av föräldrar till barn med cancer. Huvudresultat: Föräldrarnas upplevelse präglades av deras individuella förmåga av att implementera strategier för att hantera utmaningarna som barnets sjukdom tillför. Hanteringsstrategierna kunde delas in i tre underkategorier: hantering av känslor, praktisk problemlösning och vårdens inverkan på upplevelsen. Information och samarbete från sjuksköterskan påverkade upplevelsen av vården. Individanpassad omvårdnad upplevdes bäst av föräldrarna. Slutsats: Samarbetet mellan vården och föräldrarna är avgörande för att kunna möjliggöra en så effektiv hantering av dessa utmaningar som möjligt. Vården behöver tillhandahålla individanpassat stöd för att föräldrarna ska känna sig väl omhändertagna, och på så sätt förbättra upplevelsen av att leva med ett barn som har cancer.

Background: The international recommendation regarding breastfeeding is that children should be completely breastfed for the first six months and then partly up to two years. Despite recommendations on breastfeeding, together with proven health effects for the child and the mother, this is not a reality today. The question is what it could be due to, for some it is about medical reasons and for others it is about a lack of knowledge or a desire to share the feeding with their partner. Regardless of the reason, it is important as a specialised nurse to be able to support in an adequate way.  Purpose: The aim was to describe how specialised nurses within child health care support mothers to breastfeed. Method: Semi-structured interviews were conducted with specialised nurses working within child health care in south-west Sweden. Seven specialised nurses participated in the study. The data was analyzed inductively with qualitative content analysis according to Graneheim & Lundman (2004). Result: The data analysis resulted in three categories: "The importance of having a good attitude" which implied specialised nurses attitude towards the family and "The importance of using different strategies" was about being able to adapt the nursing based on the unique situation. The third category "The importance of obtaining information" described the need of obtaining knowledge to be able to support in an adequate way. All categories had associated subcategories. Conclusion: The specialised nurses described that their treatment was an important part of their work and strove for an open approach. They needed to include the whole family and adapt the care to their wishes. Previous research confirms that an optimal support can contribute to a well-functioning breastfeeding.

I Sverige finns 36 neonatalavdelningar, där vårdas spädbarn som kräver högspecialiserad vård. Sjuksköterskor som arbetar inom neonatalvården behöver därför ha adekvat utbildning och vara kunniga inom sitt område. I nuläget bedriver inte alla neonatalavdelningar familjecentrerad enkelrumsvård. Familjecentrerad enkelrumsvård innebär att föräldrarna tar hand om sitt barn under hela dygnet med stöd av sjuksköterskor. Syftet med studien var att beskriva sjuksköterskors erfarenhet av familjecentrerad enkelrumsvård på en neonatalavdelning. Semistrukturerade intervjuer genomfördes med sju sjukskörskor och analyserades med kvalitativ innehållsanalys. Ur resultatet kom tre kategorier att växa fram; sjuksköterskan och familjecentrerad enkelrumsvård, föräldrarna och familjecentrerad enkelrumsvård samt barnet och familjecentrerad enkelrumsvård. I resultatet beskriver sjuksköterskor att familjecentrerad enkelrumsvård är att föredra, både för sjuksköterskor och familjer. Erfarenhet visar på att sjuksköterskors roll förändrats, från att vara den som står barnet närmast och utför omvårdnaden till att lämna över ansvaret till föräldrarna och istället inta en undervisande roll, vilket tillåter föräldrarna att växa i sina roller och stärker anknytningen till barnet. Kommunikationen mellan sjuksköterskor och familjer är en viktig del för att vårdformen ska lyckas och behöver därför belysas, samt lyftas upp i kommande specialistsjuksköterskeutbildningar mot barn och ungdom. Dessutom behövs det på neonatalavdelningar diskuteras och struktureras upp hur kommunikationen på arbetsplatsen bör fungera. / There are 36 neonatal wards in Sweden, which demands a highly specialized healthcare. Therefore, neonatal nurses need to have adequate education and have good knowledge within their field. Not every ward in Sweden conducts family centered single-room care. This care-model means that parents take care of their child throughout the day with the support from nurses. The aim of this study was to highlight nurses’ experience of family-centered single-room care in a neonatal ward. Semi-structured interviews were conducted and were analyzed using qualitative content analysis. From the result three categories emerged; nurses and family-centered single-rooms care, parents and family-centered single rooms care and children and family-centered single room. The result showed that family-centered single-room care is preferred from both nurses and families. Experience shows that nurses’ role has changed from being the one closest to the child and performs nursing care, to leave that responsibility to the parents and instead assume a teaching role. This allows parents to grow in their roles and strengthens the connection with the child. Communication between nurses and families is important for this form of care to succeed, and therefore needs to be highlighted in future educations. Neonatal wards need to discussed communication and structured up how it should be carried out on the workplace.

Introdução: Partindo-se do pressuposto que o Cuidado Centrado no Paciente e na Família é o modo mais humanizado de prestar cuidado em saúde, faz-se necessário refletir sobre a aplicabilidade dessa abordagem em unidades de emergência pediátrica. Uma possibilidade é o favorecimento da presença da família no atendimento de emergência. O uso de protocolo e o treinamento de profissionais de saúde são ferramentas que fortalecem a prática. Objetivos: elaborar e aplicar na prática clínica um protocolo brasileiro que inclui a família no atendimento de emergência pediátrica. Método: estudo piloto do tipo descritivo observacional, realizado em três etapas: 1) elaboração do protocolo; 2) treinamento de profissionais para a aplicação do protocolo. O treinamento foi realizado com 26 profissionais de enfermagem atuantes em uma unidade de emergência pediátrica de um hospital de ensino, localizado na cidade de São Paulo e 3) análise da aplicação do protocolo na prática assistencial. Para essa análise, foi investigada a dinâmica do atendimento de emergência focando os aspectos relacionados à presença da família; as perspectivas de profissionais de saúde em relação ao conteúdo do protocolo e as anotações de enfermagem no que tange a aplicação do protocolo. Resultados: Foram analisados 65 atendimentos de emergência com a aplicação do protocolo. Em 65,6% dos atendimentos, foi designado um profissional de suporte; 93,4% das famílias aceitaram o convite para presenciar o atendimento e não ocorreu interrupção do atendimento ao paciente em consequência da presença desta. Ao avaliar o protocolo, 85,7% dos profissionais referiram confiança em aplicá-lo em sua prática profissional. As principais dificuldades percebidas pelos profissionais para aplicar o protocolo incluíram a falta de recursos humanos, a falta de treinamento de todos os profissionais e a falta de estrutura física para o acolhimento familiar. Em relação às facilidades, foram elencadas equipe sensibilizada à prática, suporte familiar, o CCPF como alicerce teórico e membros na equipe experientes sobre o tema. Em relação ao conteúdo, os profissionais consideraram o protocolo fácil e rápido de ser aplicado. Apenas em 50% das anotações de enfermagem foi registrado que a família estava presente no atendimento. Conclusões: As ações promotoras para a adoção institucional do protocolo incluem a sensibilização dos profissionais para acolher as famílias no atendimento de emergência e treinamento para a aplicação do protocolo na prática assistencial. Além disso, as ações que facilitam a implantação do protocolo na prática assistencial incluem respaldo teórico na abordagem do CCPF, profissionais que atuem como referência sobre o tema para os demais membros da equipe e designação de um profissional de suporte. / Introduction: Based on the assumption that Patient and Family Centered Care (PFCC) is the most humanized way of providing health care, it is necessary to reflect on the applicability of this approach in pediatric emergency units. One possibility is to favor the presence of the family in emergency care. The use of protocol and the training of health professionals are tools that strengthen the practice. Objectives: To elaborate and apply in clinical practice a Brazilian protocol that includes the family in pediatric emergency care. Method: pilot study of descriptive observational type, carried out in three stages: 1) elaboration of the protocol; 2) professional training for the application of the protocol. The training was performed with 26 nursing professionals working in a pediatric emergency unit of a teaching hospital, located in the city of São Paulo; and 3) analysis of the application of the protocol in the practice of care. For this analysis, it was investigated the dynamics of emergency care focusing on the aspects related to family presence; the perspectives of health professionals regarding the content of the protocol and the nursing notes regarding the application of the protocol. Results: A total of 65 emergencies were analyzed using the protocol. In 65.6% of the attendances a support professional was assigned; 93.4% of the families accepted the invitation to attend the service and there was no interruption of the patient care due to the presence of the family. When evaluating the protocol, 85.7% of the professionals reported confidence in applying it to their professional practice. The main difficulties perceived by professionals to apply the protocol included lack of human resources, lack of training of all professionals and lack of physical structure for the family. Regarding the facilities, the team was sensitized to practice, family support, the PFCC as a theoretical foundation and have experienced team members on the topic. Regarding content, professionals considered the protocol easy and quick to apply. Only 50% of the nursing notes recorded that the family was present in the care. Conclusions: The actions promoting the institutional adoption of the protocol include raising the awareness of professionals to receive families in emergency care and training for the application of the protocol in the practice of care. In addition, actions that facilitate the implementation of the protocol in the practice of care include theoretical support in the approach of the PFCC, professionals who serve as reference on the theme for the other members of the team and appointment of a support professional.

Bakgrund: Barnhälsovårdens uppdrag är att arbeta hälsofrämjande och förebyggande med alla barn och deras familjer. Att bli förälder till ett prematurfött barn har i studier visat sig ha långtgående effekter på familjen. Krisreaktioner som stress, ångest och oro är vanliga hos föräldrarna. I takt med att fler barn som föds för tidigt överlever, förändras kraven på barnhälsovårdssjuksköterskorna och familjernas behov av insatser från barnhälsovården. Syfte: Syftet med studien var att beskriva barnhälsovårdssjuksköterskors erfarenheter av att möta familjer med prematurfödda barn inom barnhälsovården. Metod: Kvalitativ metod med induktiv ansats. Semistrukturerade intervjuer med åtta barnhälsovårdssjuksköterskor. Data analyserades genom kvalitativ innehållsanalys. Resultat: Resultatet visar att barnhälsovårdssjuksköterskorna värdesätter tidigare yrkeserfarenhet och kunnighet i mötet med familjerna. Oavsett erfarenhet, var de i behov av och värdesatte kontinuerlig fortbildning. Möten med familjer i kris gjorde barnhälsovårdssjuksköterskorna osäkra eftersom de saknade formell utbildning kring sådana samtal. Barnhälsovårdssjuksköterskorna arbetar familjefokuserat och anpassar barnhälsovårdens program efter barnets och familjens behov. Utgångspunkten var barnets hälsa snarare än dess prematuritet. Barnhälsovårdssjuksköterskorna framhöll att tidig kontakt med familjen stärkte den kommande relationen.  Slutsats: Barnhälsovårdssjuksköterskorna är i behov av kontinuerlig fortbildning samt utbildning i hur man möter en familj i kris. Genom att arbeta familjefokuserat, stöttar de familjerna till en fungerande vardag och att se det friska hos barnet. Tidig kontakt med familjen främjar relationen mellan dem och barnhälsovårdssjuksköterskorna. Få studier är gjorda där barnhälsovårdssjuksköterskors erfarenheter beskrivs, vilket motiverar nyttan med studien. / Background: Primary child health care offer health support and promotion to all families. Studies have shown that the birth of a premature child has long-term effects on the family. Stress reactions such as worrying and anxiety were common with the parents. Improved survival rates in premature children therefore create new demands on primary child health care nurses and the support families need from the primary child health care.  Aim: The aim of this study was to describe primary health care nurses’ experiences of meeting families with premature children in a primary child health care context. Method: Qualitative research design with inductive approach. Semistructured interviews with eight primary child health care nurses. Data was analysed with qualitative content analysis. Results: The result implies that the nurses value professional experience and knowledge. Regardless of work life experience, all nurses requested further training. Meeting families with traumatic experiences, made the nurses insecure since they lacked formal training in dealing with such situations. The nurses applied family-centered care to all meetings with the families, adapting the child health care program to the needs of the child and its family. Health rather than conditions related to the prematurity was the center of attention. The nurses agreed that meeting the families at an early stage was imperative to building their forthcoming relationship. Conclusion: The nurses need further professional knowledge and as well as training in how to respond to a family crisis. By applying family-centered care to all families, the nurses give families support in day-to-day life and promote child health. Early connection between nurses and families boosts their relationship. Research into primary child health care nurses’ experiences is limited which motivates this study’s relevance.

It is estimated that one out of every five household with children in the United States includes a Child with Special Health Care Needs (CSHCN). Families of CSHCN face many challenges including financial burdens beyond that of other families and difficulty accessing much needed pediatric specialty care. Telemedicine provides a potential solution or, at the least, an alternative to the traditional system of care, for health care providers and communities to address access and financial concerns of families of CSHCN. A quasi-experimental research design was used in this study to examine the differences in cost, caring, and family-centered care in relation to pediatric specialty services utilizing telemedicine technology compared to traditional face-to-face care. The study sample included a convenience sample of 222 parents/ guardians of CSHCN residing in rural, remote and medically underserved areas of Southeast Florida enrolled in the Children's Medical Services (CMS) program. The sample was comprised of two study groups: traditional (n = 110) which included families receiving traditional face-to-face pediatric specialty care; and the telemedicine group (n = 112) which included families who have received telemedicine visits along with traditional face-to-face pediatric specialty care. Measures of cost, caring, and family-centered care were obtained using three instruments including a Family Cost Survey, Caring Professional Scale (CPS), and Measure of Processes of Care- 20 Item Scale (MPOC-20). Results indicated that there were no significant differences in family costs when telemedicine was available locally compared to traditional face-to-face care in the local community. Family costs were anticipated to be significantly higher if telemedicine was not available in their communities. There were no differences in the families' perceptions of care as caring for the telemedicine and traditional groups. Results indicated significant differences between the groups in regards to family-centered care, with telemedicine group parents/ guardians reporting more positive perceptions of the system of care as family-centered compared to families receiving traditional face-to-face pediatric specialty care. These results together underscore the importance of assuring and facilitating access to pediatric specialty care for CSHCN and their families by further reducing their burdens and costs. The use of innovative systems of care such as telemedicine has promise to promote caring, family-centered systems of care in their home communities. Future research is recommended to further examine nursing roles and interventions in telemedicine programs, measurement tools, and family perceptions of systems of care across different populations.

Family-centered care (FCC) focuses on considering the family in planning/implementing care and is associated with increased patient satisfaction. Little is known about factors that influence FCC. Using linear mixed modeling and Generalized Estimating Equations to analyze data from a cross-sectional survey of primary care practices in Ontario, this study sought to determine whether models of primary care service delivery differ in their provision of FCC and to identify characteristics of primary care practices associated with FCC. Patient-reported scores of FCC were high, but did not differ significantly among primary care models. After accounting for patient characteristics, practice characteristics were not significantly associated with patient-reported FCC. Provider-reported scores of FCC were significantly higher in Community Health Centres than in Family Health Networks. Higher numbers of nurse practitioners and clinical services on site were associated with higher FCC scores but scores decreased as the number of family physicians at a site increased.

Family-centered care (FCC) focuses on considering the family in planning/implementing care and is associated with increased patient satisfaction. Little is known about factors that influence FCC. Using linear mixed modeling and Generalized Estimating Equations to analyze data from a cross-sectional survey of primary care practices in Ontario, this study sought to determine whether models of primary care service delivery differ in their provision of FCC and to identify characteristics of primary care practices associated with FCC. Patient-reported scores of FCC were high, but did not differ significantly among primary care models. After accounting for patient characteristics, practice characteristics were not significantly associated with patient-reported FCC. Provider-reported scores of FCC were significantly higher in Community Health Centres than in Family Health Networks. Higher numbers of nurse practitioners and clinical services on site were associated with higher FCC scores but scores decreased as the number of family physicians at a site increased.

Oro och ovisshet påverkar både föräldrar och syskon när ett barn föds för tidigt. Inom neonatalvården idag används ofta familjecentrerad vård som omvårdnadsmodell. Ett mål med familjecentrerad vård är att fokusera på familjen som en enhet. I verkligheten är det dock ofta så att syskonen glöms bort. Syftet med denna studie var att beskriva syskons upplevelse av att få ett prematurfött syskon. Metoden som användes var litteraturstudie, där resultatet baseras på åtta artiklar. Fyra kategorier framkom: Ambivalenta känslor och förändrat beteende, Avsaknad av förälder, Förändrade roller samt Behov av bearbetning och stöd. I resultatet framkom att syskon, i samband med att de får ett för tidigt fött syskon, får en känslomässig reaktion, många gånger kopplat till ett förändrat beteende som kan vara både positivt och negativt. Syskonen tar ofta själva på sig nya roller och ansvar som kan gå utöver vad man kan förvänta sig. De upplever ofta att de saknar sina föräldrar, då dessa är upptagna av oro och stress samt många sjukhusbesök. Stöd till syskon har gett gott resultat på deras psykosociala beteende. Det finns få artiklar publicerade om syskon till prematurfödda barn och vidare forskning behövs både ur syskonens och familjens perspektiv, men även ur omvårdnadspersonalens synvinkel. / Worry and uncertainty have an impact on both parents and siblings when a child is born prematurely. Family-centered care is often used as a nursing model, within the neonatal care setting. One focus of Family Centered Care is to consider the whole family unit. In reality, however, siblings are often forgotten. The purpose of this study was to describe the siblings’ experience of having a premature baby brother or sister. The method used was a literature study, where the result was based on eight articles. Four categories emerged: Ambivalent feelings and altered behavior, Absence of parents, Altered roles and Need for processing and support. The result showed that when a premature baby is born, the sibling has an emotional reaction, often linked to a positive or negative change in behavior. The siblings often take on new roles and responsibilities that exceed what could be expected for their age. Siblings often feel they miss their parents, as they are occupied with worry and stress as well as frequent hospital visits. Support for siblings has shown positive outcomes on their psychosocial behavior. There is little research undertaken about siblings of premature children and further research is needed both from the perspective of the siblings and the family as well as from the perspective of the nursing staff.