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.

Bakgrund: Redan på 1970-talet uppmärksammades närståendes situation inom vården, och trots att det har skett en ökning kring familjerelaterad forskning under de senaste 20 åren finns det fortfarande brister inom familjerelaterad omvårdnad Syfte: Syftet med studien var att beskriva närståendes upplevda behov av stöd från sjuksköterskan när en anhörig drabbas av allvarlig sjukdom eller skada. Metod: Den studie som genomfördes var en litteraturstudie, den inkluderar 10 artiklar varav 8 var kvalitativa och 2 var kvantitativa. Sökningar gjordes i Cinahl, PubMed och DiVA. Innehållet analyserades och kategorier identifierades. Resultat: Två huvudkategorier och tre underkategorier identifierades. Första huvudkategorin var närståendes behov, med underkategori betydelsen av kommunikation i vården med de närstående samt återhämtning. Den andra huvudkategorin var stöd som finns att tillgå, med underkategorierna närståendes delaktighet i vården. Slutsats: Studien visar på att närstående upplever ett stort behov av få vara delaktiga i vården kring patienten, framförallt genom att få information. Att göra närstående delaktiga kan minska den upplevda stressen vilket kan leda till ett ökat förtroende för vården. / Background: Already in the 1970’s were significant others situation in the healthcare highlighted, and although there has been an increase on family-related research over the past 20 years, there are still gaps in family-related care. Aim: The aim was to describe significant others experience of needs from the nurse, when a patient suffer from a serious illness or injury. Method: The study was conducted as a literature review, which included 10 articles of which 8 were qualitative and 2 were quantitative. Searches were made in Cinahl, PubMed and DiVA. The content was analyzed and themes were identified. Result: Two main themes and three subthemes were identified. The first main theme was the significant other’s needs, with the first subtheme being the meaning of communication in healthcare with the significant other and the second subtheme being recovery. The second main theme was available support, with the subtheme being significant others participation in care. Conclusion: The study implies that significant others felt a need to be involved in health care around the patient, especially by getting information. To involve the significant other can reduce the stress experience, which in turn can raise the trust in health care.

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.

A qualitative approach was used to explore the perceptions of parents and therapists in early intervention regarding sensory diets and their efficacy, particularly their goodness of fit within family routines and occupations. Open-ended interviews were conducted with therapist and parent participants and analysis of the data resulted in a model depicting how sensory diets became a "way of life" for families. The Sensory Diet "Way of Life" Model revealed seven themes that illustrated how occupational therapists in early intervention enter the homes of the families they serve and establish a "partnership" with parents to address a child's needs. Once this "partnership" is established, knowledge is transferred to parents who then transform their "vision" of their child and are empowered to generalize knowledge of sensory processing and sensory diets to ever enlarging environments. Ultimately, the sensory diet became a "way of life" for these families. Implications for the field of occupational therapy were given following the presentation of the model.

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.