Intensivvårdspatienter är ofta sederade och intuberade och kan därmed ej vara delaktiga i sin vård. Närstående har enligt svensk lag rätt att delta i planering och utförande av vården för patienter som inte kan tala för sig. Studier har undersökt och belyst närståendes behov vid vård av intensivvårdspatienter. Få studier har fokuserat på närståendes uppfattning om delaktighet i vården av intensivvårdspatienter. Syfte  Att undersöka hur närstående upplever sin delaktighet i beslutsfattande och omvårdnad av intensivvårdspatienter. Metod  En deskriptiv kvalitativ design med semistrukturerade intervjuer användes, med en fenomenografisk ansats. Nio närstående intervjuades. Resultat Fem kvalitativt skilda beskrivningskategorier framkom och ordnades hierarkiskt; Beslutsfattandets betydelse – medicinska beslut överlämnas, Delta i omvårdnad – både positivt och skrämmande, Positivt bemötande avdramatiserar, Viktigt att vara fysiskt nära och Tydlig information underlättar delaktighet. Beskrivningskategorin Tydlig information underlättar delaktighet placerades högst i hierarkin eftersom informanterna angav att informationen hade störst betydelse för upplevelsen av delaktighet i vården. Slutsats Kännedom om närståendes olika upplevelser av delaktighet, i synnerhet vikten av rak och tydlig information kan möjliggöra för personalen att bättre inkludera närstående och därigenom öka deras upplevelse av delaktighet i vården av intensivvårdspatienter. / Intensive care patients are often sedated and intubated and can not participate in their care. Swedish law states that when a patient can not participate in care, relatives should be invited to participate in his/her place. Many studies have been conducted focusing on relatives’ needs, but very few focus on their perception of participation in care of intensive care patients.  Aim This study was conducted to explore how relatives perceive their participation in care of intensive care patients, with regards to decision making and participating in physical care. Method A descriptive, qualitative design was used, with semi-structured interviews and with a phenomenographic approach. Nine relatives were interviewed. Results Five qualitatively differing categories of description appeared and were organized in a hierarchy; The importance of decision making – medical decisions are handed over, Participating in physical care – both positive and scary, A welcoming atmosphere helps ease the mood, Important to be physically near, Clear information helps the perceived participation. The category Clear information helps the perceived participation was placed the highest in the hierarchy because the informants described information as the most important for the perceived participation in care. Conclusion Knowledge about relatives’ different perceptions of participation in care, especially the importance of straight forward and direct information, may enable the nursing staff to better include relatives and increase their satisfaction and perceived participation in care of the intensive care patients.

Bakgrund: Barn som föds för tidigt mår i allmänhet bäst av att vårdas av sina föräldrar dygnet runt. Att övergå från öppna rum till familjerum innebär en omställning för personal. Det finns få svenska studier som belyser hur personalen upplever denna förändring. Syfte: Syftet med studien var att beskriva personalens upplevelser av arbete och arbetsmiljö efter en genomförd flytt till nya lokaler och införandet av samvård. Metod: Studien genomfördes med kvalitativ metod med 12 deltagare fördelade på två fokusgruppsintervjuer samt 4 enskilda intervjuer med nyckelpersoner. Dataanalyserades med kvalitativ innehållsanalys. Resultat: I resultatet framkom ett övergripande tema" Realiteten som hinder för att uppleva visionen" med två huvudkategorier som beskrev personalens upplevelser efter den genomförda flytten "Visionen om arbetsmiljön som inte uppfylldes" och "Visionen om föräldrar och barn". Därtill identifierades 12 underkategorier som beskrev personalens upplevelser av förändringsarbetet och processen det inneburit med flytten till en ny vårdbyggnad. Det fanns svårigheter och utmaningar för personalen att gå från öppna rum till enskilda familjerum och införandet av familjecentrerad samvård. Personalen ansåg att lokalerna var dåligt planerade och de hade önskat att deras erfarenheter och åsikter hade vägt tyngre i planeringen. Dock upplevdes vården bättre för barn och familjer efter att familjerum blev tillgängliga. Slutsats: Det finns svårigheter och utmaningar för personalen med att införa samvård som en ny vårdform. Personalen anser ändå att det är det bästa för barnet och familjen. Att involvera personalen och använda deras kunskap och erfarenhet är viktigt vid byggandet av en ny avdelning och införande av samvård eftersom det påverkar deras arbetsmiljö. Nyckelord: Neonatalvård, Familjecentrerad samvård, Samvård, Arbetsmiljö, Anknytning / Bakground: Children born prematurely are in general best cared for by their parents around the clock. The transition from an Open-Bay to a Single-Room unit entails a new way to care for the family and collaboration with staff. There are few studies that illustrates how staff perceive this change. Aim: The aim of the study was to describe staff's experiences of the working environment and working with Family-centered care in a Single-Family-Room unit. The method: The study was conducted with a qualitative design, in which two focus groups with 12 participants and four individual interviews were conducted. Data were analyzed using qualitative content analysis. The result: The result showed an overall theme "Reality as a barrier for experiencing the vision". Two main categories described the staff's experiences after completed the move:"The vision of the work which was not fulfilled" and "The vision of parents and children". In addition, 12 subcategories were identified that described the staff's difficulties and challenges in moving from working in Open-Bay to Single-Room unit. The staff felt that the premises were poorly planned and they had hoped that their opinions had been taken in to account in the planning process. With regard to the care for the family, staff experienced beneficial improvements after introducing Single-Rooms. Conclusion: There are difficulties and challenges for the staff to introduce rooming as a new form of care. The staff believe that it is best for the child and the family. Involving staff and use their knowledge and experience is important in the construction of a new department and the introduction of rooming because it affects their working environment. Nyckelord: Neonatal Nursing, Family Centered Care, Rooming, working environment, Attachment

På sjukhus i Sverige arbetar sjuksköterskor på neonatalavdelningar med att ta hand om de allra minsta barnen och deras speciella behov. Barnen är i behov av specialistsjukvård, ibland intensivvårdskrävande med högteknologisk utrustning, samtidigt som de behöver påbörja den viktiga anknytningen till sin familj. Sjuksköterskor behöver specialkompetens för att arbeta i den krävande vårdmiljön, där de skall ta hand om ett vårdkrävande barn samt familjen till barnet och arbeta familjecentrerat. Syftet med studien var att belysa sjuksköterskors erfarenhet av att arbeta med familjecentrerad neonatalvård. Fokusgruppsintervjuer genomfördes som senare analyserades med kvalitativ innehållsanalys. Resultatet presenteras i fyra kategorier ” familjen i centrum”, ”sjuksköterskans roll”, ”sjuksköterskans inställning” och ”miljöns betydelse”. Av resultatet framkom att familjecentrerad neonatalvård ställer höga krav på personalen som arbetar där samt att miljöns utformning är av betydelse. Personalen måste vara lyhörd för såväl barnets behov som föräldrarnas, i en vårdmiljö som inte alltid är ändamålsenligt utformad. I framtida utbyggnad av familjecentrerad neonatalvård är det önskvärt att ta del av den erfarenhet som finns bland så väl sjuksköterskor som föräldrar för att få framtidens familjecentrerade neonatalvård så god som möjligt. / At hospitals in Sweden, nurses are working in neonatal units caring for the youngest infants and their special needs. The infants are in need of specialist care, sometimes even intensive care with high technology equipment, at the same time the infants needs to start improve the important connection to his family. The nurses needs specialized skills to be able to work in these demanding healthcare environment. They are supposed to take care of infants with special needs, care for the family and do this with focus on family centered care. The aim of this study was to illuminate nurses ‘experiences of working at neonatal care units engaged to family centered care. The interviews were conducted in focus groups. They were subsequently analyzed by qualitative content analysis. The results are presented in four categories “the family in the center”, “nurses´ role”, “nurses´ attitude” and “importance of the environment”. The result showed that it requires a lot from the nurses, but also from the environment that prevails. The nurses need to be responsive as well to the needs of the infant as to the family’s needs, in an environment which is not always made for its intended use. In future expansion of family centered neonatal care units, it´s desirable to take advantage of the experiences that exists among nurses as well as parents, to make the future family centered neonatal care units as good as possible.

While much research has focused on the psychosocial health of youth with spina bifida and their parents, less is known about the sibling experience. This cross-sectional mixed method study tested an ecological model of adjustment for adolescent siblings using self-report surveys. Convenience sampling methods were used to recruit 224 families from the Spina Bifida Association of America and three spina bifida clinic sites. The central hypotheses evaluated whether a set of ecological variables (stress appraisal, satisfaction with family functioning, warmth and conflict in the sibling relationship, and peer support) predicted sibling self-concept, prosocial behavior, and behavior difficulties, after controlling for spina bifida severity, length of time having a brother/sister with spina bifida, and sibling age. A potential moderating influence of sibling gender and birth order was also examined. A qualitative component was included to ascertain whether the variables included in the ecological model captured those concepts reported as salient by the siblings. Hierarchical regression equations tested the central hypotheses. Content analysis was performed on the qualitative data, with journaling and an external auditor used to enhance rigor.The ecological model explained a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties. Significant individual risk and protective factors were observed at several layers of sibling life, and there were divergent predictors of self-concept and behavior. Birth order emerged as an important moderating variable in several regression equations. The qualitative analysis revealed five major domains and twenty-one themes capturing the lived experience of siblings. Their stories reflected overall acceptance for the omnipresence of spina bifida, though ongoing difficulties such as jealousy, embarrassment, and guilt were evident, particularly for those participants in early adolescence. The journey toward acceptance of spina bifida was one marked by intense, and at times conflicted, emotions. Findings from this research suggest family-centered care may be enhanced by clarifying and supporting sibling perception of the impact of spina bifida, promoting a healthy family milieu characterized by communication sharing, growth opportunities, and positive sibling interactions, and encouraging opportunities for peer socialization.

ABSTRAKT Bakgrund: I världen diagnostiseras cirka 160 000 barn under 15 år varje år med cancer. När ett barn drabbas av cancer förändras livet för hela familjen, föräldrarnas fokus hamnar på det sjuka barnet och ensam kvar blir det friska syskonet. Alla familjemedlemmars behov bör uppmärksammas och tillgodoses. Syfte: Att beskriva friska syskons upplevelser av att leva med ett barn i familjen som drabbats av cancer. Metod: En litteraturstudie sammanställdes av åtta kvalitativa studier som samtliga kvalitetsgranskats och analyserats.   Resultat: Resultatet presenteras i tre kategorier och tio subkategorier. Kategorierna är: Att hantera den svåra situationen - omvälvande känslor, behov av information och delaktighet och tröst och stöd från omgivningen. Förändrade relationer i familjen - familjen splittras, syskonrelationen förändras, känsla av utanförskap och minskad uppmärksamhet. En annorlunda vardag - längtan efter ett normalt liv, ett ökat ansvar och gynnsamma konsekvenser av sjukdomen. Konklusion: Att känna delaktighet och vara nära sin familj är viktigt för de friska syskonen. Vården måste se syskonens behov, ge stöd och information för att de ska kunna hantera den svåra situationen. / ABSTRACT Background: Every year approximately 160 000 children under 15 years are diagnosed with cancer. When a child suffering with cancer life changes for the whole family, the parents have the focus on the sick child and the healthy sibling will be left alone. All family members’ needs must be recognized and accommodated. Aim: The aim of this literature study was to describe the healthy siblings’ experiences of living with a child in the family affected by cancer. Method: A literature study of eight qualitative studies have been reviewed and analyzed. Result: The results are presented in three categories and ten subcategories. The categories are: Dealing with the difficult situation - disruptive feelings, needs for information and involvement and comfort and support from the environment. Changing relationships in the family - to divide the family, sibling relationships change, a sense of alienation and decreased attention. A different everyday - the longing for a normal life, greater responsibility and favorable consequences of the disease. Conclusion: To feel involved and being close to the family is important for the healthy siblings. Healthcare must see the siblings' needs, provide support and information to enable them to cope with the difficult situation.

Thesis advisor: Dorothy Jones / A family's unique way of being, formulated through social, economic, environmental and political factors, becomes fractured during a loved one's critical illness. Family members experience burdensome physical and emotional symptoms as they transition through the marked uncertainty endemic to high acuity illness. For some, this burden results in long term psychiatric disturbances. Assessment tools and interventions have been proposed for family members experiencing a loved one's critical illness. However, ongoing suffering suggests inherent limitations within these reductionist approaches. The need for a more encompassing disciplinary perspective is suggested. Margaret Newman's (1986, 1994, 2008) theory of Health as Expanding Consciousness (HEC) and its praxis research method was employed to explore relationship based care among intensive care unit (ICU) family members and registered nurses. HEC retains person/environmental integrity through unfolding of unitary knowledge via exploration of meaning. Additionally, its holistic perspective aligns philosophically with the belief in nursing science as the study of caring in the human health experience, endorsing both the mutuality of the nurse/client relationship and pattern recognition's capacity to inspire transformational growth. The study was performed in an eighteen bed medical ICU in the northeast region of the United States. This unit's design includes an integrated critical/palliative care model. Exploration of the study's two research questions was accomplished using the practice and research components of HEC within a sample of eight family members and six registered nurses. Results demonstrated family members' capacity to achieve consciousness expansion within the context of a loved one's critical illness. Registered nurses revealed their ability to steadfastly partner with both patients and families. Repetitive elements distinguished as thematic commonalities were recognized among both family member and registered nurse participants. Additionally, thematic integration between family members and registered nurses was appreciated. HEC was found to offer unique insights into caring relationships between ICU family members and registered nurses. / Thesis (PhD) — Boston College, 2014. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Submitted by Rosivalda Pereira (mrs.pereira@ufma.br) on 2017-05-10T17:16:05Z No. of bitstreams: 1 JessicaRibeiro.pdf: 1520143 bytes, checksum: 45259508ae833210e1a973aa74f36e8d (MD5) / Made available in DSpace on 2017-05-10T17:16:05Z (GMT). No. of bitstreams: 1 JessicaRibeiro.pdf: 1520143 bytes, checksum: 45259508ae833210e1a973aa74f36e8d (MD5) Previous issue date: 2016-09-22 / Introduction: Family-Centered Healthcare has been adopted as a philosophy of care in nursing and means that nurses incorporate into their care the knowledge and conviction that families represent a constant in the life of their members. The investigated object was delimited from the healthcare practices of nurses in the context of childbirth and postpartum and the attitudes of these professionals toward familycentered care, supported by the following research question: What attitudes are adopted by nurses in the context of childbirth and postpartum concerning the importance of the family in the healthcare process? Objectives: To identify nurses’ attitudes about the importance of families in the healthcare process, in the context of childbirth and postpartum according to the dimensions of the IFCE-AE Scale (A Importância das Famílias nos Cuidados de Enfermagem – Atitudes dos Enfermeiros [Importance of Families in Nursing Care – Nurses’ Attitudes); To relate the attitudes of nurses about the importance of families in the process of childbirth and postpartum healthcare with the professional training time and the degree of the nurses; To describe the attitudes that contribute to and/or suggest the valuation of families in the healthcare practices of nurses. Method: Descriptive and correlational cross-sectional study, carried out in the Housing and Obstetric Center of two reference health institutions in the state of Maranhão assisting with childbirth and postpartum: Hospital Universitário Unidade Materno Infantil (HUMI/UFMA) and Marly Sarney Maternity. The population was composed of seventy-six nurses, using two questionnaires to collect the data: IFCE-AE Scale (referenced above) and the Academic Professional Questionnaire. Software Stata 12.1 and the Pearson Correlation and t-student tests were used for the statistical analysis of the data. Results: Nurses held supportive attitudes toward families, with the average of 74.5 points in the area of Family: conversational partner and coping resource were 35.6; in the area of Family: resource in nursing care was 30.8 points and in the area of Family: Burden, the average was 8.01 points. A weak correlation was verified between the number of the nurses’ post-graduate studies in the area of Family: Burden; among the nurses with post-graduate studies in ICU with the area of Family: conversational partner and coping resource and a negative correlation between the attitude of the nurse toward the family and the attainment of the Family Nursing degree upon graduation. Conclusion: It would be opportune on the part of the studied instituions to invest in continued focused education in family care practices, with courses that involve this theme. For educational institutions for nurses, changing curriculum that suits the reality found outside of the walls of universities is essential. / Introdução: O Cuidado Centrado na Família tem sido adotado como filosofia do cuidar na enfermagem e significa que os enfermeiros incorporam no cuidado o conhecimento e a convicção de que as famílias representam uma constante na vida dos seus membros. O objeto investigado delimitou-se a partir das práticas de cuidados dos enfermeiros no contexto do parto e puerpério e as atitudes desses profissionais para o cuidado centrado na família, apoiado na seguinte pergunta de pesquisa: Quais atitudes são adotadas pelos enfermeiros no contexto do parto e puerpério imediato face à importância da família no processo de cuidar? Objetivos: Identificar atitudes de enfermeiros sobre a importância das famílias no processo de cuidado, no contexto do parto e puerpério segundo as dimensões da Escala “A Importância das Famílias nos Cuidados de Enfermagem – Atitudes dos Enfermeiros (IFCE – AE)”; Relacionar as atitudes dos enfermeiros sobre a importância das famílias no processo de cuidado no contexto do parto e puerpério, com o tempo de exercício profissional e a titulação dos enfermeiros; Descrever as atitudes que contribuem e/ou implicam para a valorização das famílias nas práticas de cuidados dos enfermeiros. Método: Estudo transversal, descritivo e correlacional, de abordagem quantitativa, realizado no Serviço de Alojamento Conjunto e Centro Obstétrico de duas instituições de saúde de referência no Estado do Maranhão na assistência ao parto e puerpério: Hospital Universitário Unidade Materno Infantil – HUMI/UFMA e Maternidade Marly Sarney. A população foi composta por 76 enfermeiros, utilizando dois questionários para coleta de dados: escala A Importância das Famílias nos Cuidados de Enfermagem - Atitudes dos Enfermeiros - IFCE-AE e o Questionário Acadêmico Profissional. Para a análise estatística utilizou-se o Software Stata 12.1 e os testes de Correlação de Pearson e t-student. Resultados: Os enfermeiros detinham atitudes de suporte para com as famílias, com média da escala total de 74,5 pontos enquanto na dimensão Família: parceiro dialogante e recurso de coping a média foi de 35,6 pontos; na dimensão Família: recurso nos cuidados de enfermagem de 30,8 pontos e na dimensão Família: Fardo, a média foi de 8,01 pontos. Verificou-se correlação fraca entre o número de pós-graduações dos enfermeiros na dimensão Família: Fardo; entre os enfermeiros com pós-graduação em UTI com a dimensão Família: parceiro dialogante e recurso de coping a correlação foi negativa entre a atitude do enfermeiro face à família e a realização da disciplina de Enfermagem de Família em sua graduação. Conclusão: Seria oportuno por parte das instituições estudadas investir em formação continuada voltadas para as práticas de cuidado de famílias, com cursos que envolvessem essa temática. Para as instituições formadoras de enfermeiros, é imprescindível mudança na estrutura curricular que contempla os componentes curriculares com suas ementas e referências para que se adeque à realidade encontrada fora dos doa muros das universidades.

From the day their child is diagnosed, parents of children with special needs are traveling on a journey of extremes. The stress parents experience can lead down many paths filled with stress, worries, and concerns as their constant companion. These conditions exert extreme pressure on parents and can lead to life-altering changes. Parents who are resilient and able to cope with continuous change will ultimately weave through the unknown to a place of positive growth known as post-traumatic growth. The research project was based on qualitative data obtained from interviews with eleven parents of children with special needs. One of the many service professionals these parents interact with on a regular basis is service coordinators. Service coordinators know many personal details related to each family and are in a position to support parents positively to encourage post-traumatic growth. Separate interviews were conducted with nine service coordinators to collect qualitative data for this project. The researcher also conducted an analysis of peer-reviewed research articles and discovered the key factor related to parent’s resilience is encouraging social support provided by peer parents. This increases their resilience and is a critical factor towards achieving positive post-traumatic growth. During research analysis, the researcher found Family-Centered Care to be the most promising method for service coordinators to interact with families and increase the factors of resilience in parents. The current focus at Regional Centers is person-centered thinking. While this practice is beneficial for the clients served, it lacks the holistic consideration of the client and their family together. Future practice recommendations for service coordinators would include policy changes within the Regional Centers to focus on parent’s strengths to discern the supports required to provide the highest quality of care for their children. Training for service coordinators to promote resilience and increase post-traumatic growth in parents would provide additional support in a parent’s life. Support is the key factor in supporting post-traumatic growth. When parents feel supported, they can achieve more and join in stronger collaboration with service coordinators.

The induction of labor is medically indicated for many conditions in which delivering the baby outweighs the risk of continuing the pregnancy. Patients admitted for the induction of labor require adequate information to actively participate in decision making that affects their plan of care. The purpose of this quality improvement project was to improve the quality of healthcare delivery and promote patient engagement by providing consistent education using a teaching tool. The project question addressed the impact of a labor-induction teaching tool on improving patient education, participation, and overall satisfaction. The Plan-Do-Study-Act (PDSA) model was used to plan, implement, and evaluate the labor-induction teaching tool in a 9-room labor and delivery unit that averages approximately 1,500 births per year. The teaching tool content was obtained from existing patient education information from the organization's resource library. The nurses piloted the teaching tool for all patients admitted for the induction of labor for 3 weeks. Patient comments supported the use of the teaching tool to improve knowledge, increase participation in decision making, and enhance overall satisfaction. The nurses voluntarily completed an online survey that indicated the teaching tool was easy to use, positively impacted workflow, and supported informed choice. Patient charts were audited and showed a 94% compliance with documentation of education. The success of the teaching tool in improving patient education and decision-making capacity supports the development of other teaching tools, encourages patient and family-centered care, and improves the delivery of quality care.

Background and objective: Patients’ and parents’ involvement in nursing students’ pediatric clinical practice assessment is informal. This study explored patients’ and parents’ perceptions of their role in students’ formative assessment. Approach: Interviews were conducted with patients and parents admitted at the study setting who received care from a nursing student. They were transcribed verbatim. Data was analyzed using a qualitative content analysis while Lincoln and Guba’s criteria of rigor and trustworthiness were upheld. Findings: Three categories emerged from the data: 1) Patients’ and parents’ current involvement in the assessment of nursing students’ pediatric clinical practice; 2) How they would like to be involved; and 3) The benefits and challenges of their involvement. Conclusion: This study has provided an understanding of patients’ and parents’ past encounters with nursing students, the elements of care that they would want to assess, and their perceived benefits and challenges of their involvement.