This dissertation, presented in the form of a grant application, intends to deliver a technique for decreasing the pervasive achievement gap between White and Latino students. Specifically, the aim of the proposal is to identify and implement a school-embedded, family-centered intervention designed to address the local values and concerns of a southern Oregon Latino population. Latino students face unique acculturation stressors under the current U.S. system that create academic difficulties, place strain on familial relationships, and put students at greater risk for problem behavior. In addition, barriers in the U.S. school system present challenges for recently immigrated Latino parents to participate within the school. When embedded in schools, family-centered interventions addressing the needs of Latino students will strengthen the parent-child-teacher relationship and create support structures across family and school social systems to help decrease the achievement gap and produce positive academic and behavioral results. The research approach includes both qualitative and quantitative methods. Initially, a systematic process derived from a model of evidence-based practice will be used to determine a locally-appropriate family-centered intervention for implementation in an educational context with a southern Oregon Latino population. After the selection of an appropriate family-centered intervention, a pilot randomized control trial will be employed to gather data on preliminary outcome measures, including intervention feasibility, fidelity, and effects of the intervention on parents and students. Finally, project results will be disseminated to key stakeholders and funding options for larger efficacy studies will be explored. Three outcomes will result from this project: (1) identification and selection of a locally-appropriate, evidence-based, family-centered intervention for use in a southern Oregon educational context with the Latino population; (2) pilot research to determine the feasibility, implementation fidelity, and initial program effects on student and parenting outcomes; and (3) dissemination of project results and exploration of options for funding intervention efficacy research.

The current thesis investigated the relationship between Vietnamese parents of children with a disability and special educators who worked with these parents in both mainstream and special schools in Melbourne Metropolitan Regions of the state of Victoria, Australia. The key objective of the study was to research the role of the parent-educator (interpersonal) relationship and its interrelatedness with the task: two major components of a home-school partnership. The research question that guided this study was 'How does the parent-educator relationship influence the operation of a family-centered home-school partnership?' With partnerships involving parents of diverse cultural backgrounds, investigating cultural influences on the partnership were an integral part of the research process. A qualitative interpretive approach was employed in searching for perceptions of involved parties about their home-school partnerships. The design selected was multiple embedded case studies with purposeful sampling. Influences on home-school partnership were investigated from a multidimensional perspective and were described and interpreted from the views of both parents and educators. The findings indicated that the relationship played a much more significant role than the task in the successfulness of an intercultural home-school partnership. Without a mutual understanding of home-school communication, the collaboration was far from productive or even did not work out. There was also evidence that a harmonious parent-educator interpersonal relationship did not seem to have any influence on the effectiveness of a home-school partnership without parent-educator mutual understanding and agreement in terms of goals and roles expectations. The need for the educators to be more appropriately equipped with cultural training and family-centered principles also arose from the study findings.

Background: Every year, 480 families in Sweden are informed that their child is diagnosed with an incurable disease. Everyone involved is affected by the death of a child. When a familymember becomes incurably ill it affects the entire family. The family's commitment is vital in pediatric care, as the family is the child's greatest source of security. It is of great importance that the nurse who works in palliative care, has to be person oriented and family centered to meet the needs of the whole family. Aim: The aim of this study was to highlight parents’ experiences of having a child in palliative care. Method: A literature study based on 11 qualitative articles is performed. The analysis of these articles resulted in three main themes and seven sub themes. Results: Parents wanted, as far as possible, to be involved in their child’s care. They perceived a high quality of care when the care was provided with continuity and when a trustful relationship was created. A sense of security was experienced when the staff were compassionate and were able to take care of the whole family. The family also strived for a sense of normality in family life. Conclusion: Parents experienced that they were in an increased need of support from healthcare both during the palliative process but also after death. It was supportive and appreciated when the nurse encouraged the parents to take a more active role in their child’s care. / Syftet med detta examensarbete var att belysa föräldrars erfarenheter av vård av sitt palliativt sjuka barn. Barn som drabbas av en obotlig sjukdom och är i behov av vård som inte längre har ett botande syfte uppgår till en procent av den palliativa vården i Sverige. Palliativ vård av barn syftar till en vård som skall lindra symtom och skapa bästa möjliga förutsättningar för en god livskvalitet för barnet med en livsavgörande sjukdom. I examensarbetes resultat påvisades att familjen var betydelsefull och väsentlig i vården av det sjuka barnet och skulle ses som en enhet. Föräldrarna till ett döende barn gick igenom en känslomässig berg- och dalbana där känslor pendlade stundvis av optimism, hopp och perioder av ångest, skuld, stress, förlust och sorg upplevdes dagligen. Att ett barn dör är onaturligt och alla involverade påverkas av den betungande situationen. Sjuksköterskan möter ofta svårigheter i att stödja familjerna i sjukdomsprocessen av det sjuka barnet. Sorgen och kampen familjen går igenom i samband med deras barns sjukdomsprocess var genomgående i resultatet. Föräldrar beskrev sina erfarenheter av livet med det sjuka barnet som utmattande både fysiskt och psykiskt. Känslomässiga behov som föräldrarna upplevde var att känna tillit till och delaktighet i vården relaterat till barnets behandling och omvårdnadsåtgärder. Detta var faktorer som ledde till en ökad trygghet för familjen. Föräldrarna känner sitt barn bäst och har det fulla ansvaret för barnet och det var därför av yttersta vikt att sjuksköterskan hade förståelse för hur stöd och kommunikation kunde påverka föräldrarna till att fortsätta känna hopp och mening i en påfrestande livssituation. För att kunna belysa föräldrars erfarenheter har en kvalitativ litteraturstudie utförts i detta examensarbete där resultatet av 11 vetenskapliga artiklar har analyserats och nyckelfynden har skapat tre teman och sju underteman. Litteraturstudien beskriver två vårdvetenskapliga begrepp, lidande och hälsa, som är centrala i omvårdnad och är relevanta för syftet. I examensarbetes diskussionsdel lyfts diskussioner kring sjuksköterskans funktion i lindrandet av föräldrars lidande kring den förväntade och upplevda förlusten av sitt barn. Hinder som kan uppstå och förhindra att föräldrars förväntningar uppfylls, könsnormer och social hållbarhet lyfts också. Diskussionen behandlar begreppen familjecentrerad vård, hälsa och lidande som genomsyrar studien.

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This qualitative research looks at the relationships between primary caregivers of mentally ill individuals and mental health professionals from the perspective of the caregivers. It reports the stories told to me by family members of mentally ill loved ones who were receiving mental health services in order to raise awareness of the challenges these caretakers face on a daily basis as they tried to support their loved ones in the community and the isolation they experienced because of current attitudes and practices of mental health professionals. Although family members voiced their frustrations at the relationship between themselves and mental health professionals, they were not complaining as much as viewing this study as a forum to vocalize years of frustration and recount numerous personally unsatisfying interactions and relationships with mental health professionals. I used four main research questions to guide the interviews in which I asked family members to share their experiences with mental health professionals. My investigation produced a general narrative of experiences rather than specific details about the treatment of family members. The overall results of my interviews suggest that family members believe a family-centered care approach in the treatment of mentally ill individuals and the respect of mental health care professionals for family members can enhance a mental health professional's ability to treat individuals with mental illness. These results provide useful insights into the challenges that mental health professionals need to address and highlight some of the changes they need to make for community mental health care programs to work for both the mentally ill and their caregivers. / Ph. D.

Bakgrund: Specialistsjuksköterskans uppgifter på en barnintensivvårdsavdelning (BIVA) är att vårda barn och det innefattar även att vårda barn i livets slutskede. Av de barn som vårdas på en barnintensivavdelning avlider cirka två procent. Att vårda barn och familjen i en situation där fortsatt vård och överlevnad för barnet är utsiktslöst är en tung och ansvarsfull uppgift. Syfte: Studiens syfte var att belysa specialistsjuksköterskors upplevelser av att ha vårdat ett barn vid livets slutskede på en BIVA. Metod: Som datasamlingsmetod användes semistrukturerade intervjuer med sju specialistutbildade sjuksköterskor. Intervjuerna genomfördes med hjälp av en intervjuguide bestående av en huvudfråga och därefter följdfrågor. Data bearbetades utifrån kvalitativ innehållsanalys med en beskrivande ansats. Resultat: Resultatet presenteras i tre kategorier och tio subkategorier. De tre kategorierna var följande: Att känna sig trygg och erfaren i att vårda ett döende barn, familjen i fokus samt upplevelsen av stöd och strategier i det komplexa vårdandet. Diskussion: Trots att upplevelsen av att vårda barn i livets slut är en tung och känslomässig uppgift ansåg samtliga informanter det som en ansvarsfull och positiv uppgift där de kunde göra föräldrarnas sista stund med sina barn till ett fint och ljust minne. / One of the caring tasks that specialist nurses, working in the (PICU) perform, and have to face in the daily profession is to care for children who are facing the end of life in Sweden. Approximately two percent of all the children being cared for in the PICU dies. To care for children and their families when further treatment is futile is a heavy surrounding life and death. The goal of this study was to investigate the experiences of specialist nurses caring for children at the end of life. Qualitative content analyze were used as a method. Seven semi-structured interviews, with a descriptive approach, were transcribed to condensed meanings. Finally, the meaning was coded into ten subcategories within three main categories. Conclusion of this study indicated that pediatric intensive care nurses indicated their work heavy emotionally. The nurses play a vital role to the family´s final time whit their children. It is in the hands of the nurses to support and make the final time as valuable and beautiful as possible for the family.

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