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.

This dissertation research was designed as two independent research studies. The first study, qualitative, and non-experimental, aimed to examine residents’, family members’, and staff members’ (stakeholders’) satisfaction with, and attitudes toward Green House living one month prior to moving and again at one and three months after moving. Focus groups were the primary method of data collection. Thirty residents and 40 staff members transitioned to one of three Green House homes beginning January, 2013. Data collected began in December, 2012. Following each focus group, tape recordings were transcribed, and coded. Using grounded theory and the constant comparative method of analysis, themes emerged. Pre-move focus group themes revealed that stakeholders were concerned about (a) the quality of care in a system using fewer staff members and (b) the challenges associated with adjusting to a new environment. Post-move focus group themes revealed that (a) stakeholders remained concerned about staffing levels; (b) residents’ had improvements in appetite, socializing, and ambulation; and (c) staff members struggled with autonomous work teams, but preferred the Green House model of care to that of a traditional nursing home. The final model reflects a synthesis of themes from which self-efficacy beliefs were hypothesized. Themes were also linked to existing gerontological theories: Person-Environment Fit, Place-Space, Thriving, and Personhood. The second study, designed to explore the construct validity of the Person-Centered Care Attitude Tool (Per-CCat), consisted of 42 Likert-type questions divided into four sections that align with person-centered care principles. Eighty-six employees of Virginia Mennonite Retirement Community completed the survey; only 70 were analyzed due to missing data. Principal Components Analysis was the analytic approached used for these data. Bartlett’s Test of Sphericity (X2 = 2006.56, p = 0.000) and Keiser-Myers-Olkins measure of sampling adequacy (0.746) indicated that the data were factorable. The final four-factor 34-item solution aligned with the following person-centered care principals: resident autonomy, social interaction and community, work culture, and feelings toward work. Further validations studies of the Per-CCat are necessary. Given the trend in long-term care toward person-centered care, a validated survey will be useful for hiring and educating caregivers and other nursing home personnel.

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.

Bakgrund: Globalt räknas demenssjukdom till en av de stora folksjukdomarna. Symtomen på demenssjukdom delas in i kognitiva- psykiska- beteendemässiga och kroppsliga symtom. Dessa symtom orsakar stort lidande för personen med demenssjukdom och det är också svårt för anhöriga och vårdpersonal att möta de som drabbas av demenssjukdom och dessa symtom. Vård och omsorg vid demenssjukdom ska enligt Socialstyrelsen ges från ett personcentrerat förhållningssätt. Tidigare forskning visar att personcentrerad vård förordas som metod för att ge vård av hög kvalitet. Sjuksköterskans ansvar är omvårdnad. Omvårdnadens konsensusbegrepp är människa, hälsa, omvårdnad och miljö. Tidigare forskning visar att musik kan vara en användbar del i att förbättra omvårdnaden av personer med demenssjukdomar, både ur ett patient- och personalupplevt perspektiv. Syfte: Att sammanställa forskning som beskriver hur musik används inom demensvården och påvisa dess eventuella påverkan på personer med demenssjukdom. Metod: Litteraturöversikt för att sammanställa kunskapsläget. Artiklar söktes i databaserna PubMed, CINAHL och PsycINFO med sökorden ”dementia”, ”music”, ”care” och ”nurs*”. Efter kvalitetsgranskningen inkluderades 16 artiklar. Artiklarna analyserades, tolkade och sammanställdes i en resultatmatris. Resultat: Litteraturöversiktens resultat visade att musik som en del av demensvården hade positiv effekt på symtomen tillhörande demenssjukdomarna. De påtagligaste positiva effekterna visade sig inom de fyra områdena beteendemässiga- psykologiska och kognitiva symtom samt livskvalitativa värden. Slutsats: Musik är ett bra alternativ och/eller tillägg i demensvården och behandlingen av personer med demenssjukdom / Background: Globally, dementia is considered one of the major diseases of the population. Symptoms of dementia are divided into cognitive, behavioral and physical. These cause severe suffering to the person with dementia and is a challenge for the relatives and healthcare professionals. Care and nursing for persons with dementia should, according to the National Board of Health and Welfare, be given from a person-centered approach. Previous research shows that person-centered care is recommended for providing high-quality care. The nurse's responsibility is nursing. The consensus concept of nursing is a human being, health, nursing and the environment. Previous research shows that music can be a useful in the care of people with dementia. Purpose: To present research describing how music is used in dementia care and demonstrate the possible effects on people with dementia.  Method: Literature review to compile the state of knowledge. Articles were searched in the databases PubMed, CINAHL and PsycINFO with the search words "dementia", "music", "care" and "nurs *". After the quality review, 16 articles were included. The articles were analyzed, interpreted and compiled in a result matrix. Result: The result of the literature review showed that music as part of the nursing and care had a positive effect on the symptoms associated with dementia. The most significant positive effects were found in the four areas of behavioral, psychological, cognitive symptoms and quality of life. Conclusion: Music is a good alternative and/or supplement in nursing and treatment of people with dementia.

Bakgrund: I Sverige lever idag ungefär 130 000 - 150 000 personer med demenssjukdom. Sjukdomen orsakas av skador i hjärnan som medför en rad symtom som påverkar olika förmågor negativt hos personen som är drabbad. Detta leder i sin tur att personen blir beroende av omgivningen. Malnutrition är ett av de problem som personer med demenssjukdom drabbas av. Det är sjuksköterskans ansvar att ha kunskap och kännedom om tecken på risk för undernäring och att arbeta på ett personcentrat sätt för att motverka malnutrition. Syfte: Syftet med denna studie var att beskriva förebyggande åtgärder som motverkar undernäring hos personer med demenssjukdom. Metod: Denna litteraturöversikt grundas på 15 vetenskapliga artiklar som analyserats och sammanställts. Resultat: Fyra olika teman framkom med omvårdnadsåtgärder som främjade nutritionsintaget hos personer med demenssjukdom. Dessa var fysisk och psykosocial måltidsmiljö, individuellt anpassande åtgärder för att öka nutritionsintaget och personalens behov av utbildning och kännedom om individen. Slutsats: Resultat av denna litteraturöversikt visade olika åtgärder som medförde ökat intag av mat och vätska hos personer med demenssjukdom. Hälsotillståndet hos personer med demenssjukdom kan försämras om åtgärder för att motverka undernäring inte tillämpas vilket kan leda till komplikationer så som undernäring och ohälsa. Det är centralt att åtgärderna utgår från den enskilda individen vilket ökar välbefinnande och dennes autonomi. / Background: It is about 130 000-150 000 people in Sweden living with dementia. The disease are caused by brain damage and it entails various numbers of symptoms that affect different abilities in the person with dementia. This leads to that the person becomes dependent on his or her surroundings. Malnutrition is one of the problems people with dementia suffers from. It lays in the nurse responsibility to have knowledge, to pay attention in signs of risk for malnutrition and to work with person-centered care to counteract malnutrition. Object: The purpose of this study was to describe interventions that prevent malnutrition in people with dementia. Method: This literature review was based on 15 scientific articles that were analyzed and complied. Results: Four different themes with nursing actions emerged that support the nutrition intake among people with dementia. The themes where physical and psychosocial dining environment, individually customized care actions to increase nutrition intake and health professionals need for education and their knowledge about the individual. Conclusion: The result of this literature review showed various care actions that increase food and fluid intake among persons with dementia. The state of health among people with dementia can be impaired if actions are not applied which can cause complications as malnutrition and illness. It is essential that the interventions assume from the individual, which improves the personal well-being and their autonomy.

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.

Bakgrund: Att få en demenssjukdom innebär att olika färdigheter och funktioner försämras allt eftersom. Det är också vanligt att personer med demenssjukdom drabbas av beteendemässiga och psykiska symtom (BPSD) någon gång under sjukdomens förlopp. De varierande symtomen kan vara svåra för vårdpersonal att möta. Genom att ha kunskap om sjukdomen samt ha god moral och etik ökar chanserna till ett gott bemötande och en god personcentrerad omvårdnad.   Syfte: Att beskriva omvårdnadspersonalens upplevelser av bemötande av personer med demenssjukdom.   Metod: En kvalitativ studiedesign valdes och intervjumaterialet analyserades enligt kvalitativ innehållsanalys. Datainsamlingen utgjordes av fyra semistrukturerade fokusgruppsintervjuer med omvårdnadspersonal från två olika kommuner i Sverige.   Resultat: I resultatet framkom fem kategorier och 10 subkategorier. Det handlar om att möta personen bakom demenssjukdomen, att bevara personens värdighet, att kunskap har betydelse, att sträva åt samma håll samt känslan av otillräcklighet.   Slutsats: Studien har bekräftat syftet enligt författarna. Vårdarna är måna om att ha ett bra bemötande och göra gott för den demenssjuke. Det finns många faktorer som påverkar, vissa som främjar och andra som hindrar dem från att alltid ha ett gott bemötande. Kunskap, personalkontinuitet och tillräckligt med tid är grundläggande faktorer för att vårdarna ska kunna arbeta personcentrerat. / Background: Getting a dementia disorder means that different skills and functions are impaired. It is also common for people with dementia to suffer from behavioral and psychological symptoms (BPSD) sometime during the course of disease. The varying symptoms can be difficult for healthcare professionals to face. By having knowledge of the disease as well as having good morals and ethics, the chances of good treatment and a good person-centered nursing increase.   Aim:  To describe the nursing staff´s experiences of treating people with dementia.   Method: A qualitative study design was chosen and the interview material was analyzed according to qualitative content analysis. The data collection consisted of four semi-structured focus group interviews with nursing staff from two different municipalities in Sweden.   Result: The result showed five categories and 10 subcategories. It is about meeting the person behind the dementia disease, preserving the person's dignity, knowing that knowledge is important, striving for the same direction and the feeling of inadequacy.   Conclusion: The study has confirmed the purpose of the authors. The caregivers are keen to have a good treatment and want to do good for the persons with dementia. There are many factors that influence, some that promote and others that prevent them from always having a good response. Knowledge, staff continuity and sufficient time are fundamental factors to the caregivers so they can be able to work with person-centered care.

Bakgrund: Trots att patienten har rätt enligt lag till att vara delaktig under sin vårdtid är det inte alltid lätt att göra detta i verkligheten. Det är viktigt att förstå vilka förutsättningar som behövs för att patienten ska känna sig delaktig i sin vård.  Syfte: Syftet med studien var att beskriva sjuksköterskans upplevelser och vad som kan påverka patienternas delaktighet i beslut om vård och behandling inom slutenvård. Metod: En kvalitativ metod med induktiv ansats användes i studien. Semistrukturerade intervjuer med intervjuguide som bestod av förutbestämda öppna frågor användes för datainsamling. Resultat: Resultatet visade att sjuksköterskor upplevde att inte alla patienter är helt delaktiga i beslut om sin vård och behandling. Kommunikationen inom teamet och med patienten, patienternas sjuklighet och vårdpersonalens förhållningssätt är de faktorer som framkommer i studiens resultat. Konklusion: I denna studie framkom det att klinisk erfarenhet, kompetens, kunskap samt god kommunikation med ömsesidig dialog och relevant information till patienten möjliggör att sjuksköterskor skapar förutsättningar för patientens delaktighet. Det framkom även att vårdpersonal behöver mer utbildning för att öka sin kunskap om äldre patienter för att aktivt bjuda in patienten till delaktighet och beslutfattande i vården. / Background: Although the patient is entitled by law to be involved during the care period, it is not always an easy task to achieve. This challenge highlights the importance of the conditions and requirements needed by the patient to feel involved in the care. Aim: The purpose of the study was to describe the nurse's experiences and what could affect patient’s involvement in decisions about care and treatment within inpatient care. Method: This study was based on a qualitative method with inductive approach. Semi-structured interviews with interview guide, comprised of predetermined open questions, were used to collect the data. Result: The results highlighted that according to the nurses’ experience, not all the patients were totally involved in decisions about their care and treatment. For instance, the team-patient communication, the patients' illness, and the care staff's attitude were some of the parameters identified by this study. Conclusion: In this study, it emerges that clinical experience, competence, knowledge and good communication with mutual dialogue and relevant information to the patient enable nurses to create the conditions for the patient's participation. It appears from the study that nursing staff need more education to increase their knowledge of older patients in order to actively invite the patient to participation and decision-making in the care.

Bakgrund: Lungcancer är den cancerform med högst mortalitet. Att drabbas av lungcancer kan leda till att personen upplever olika känslor som rädsla, uppgivenhet och hopp vilket är viktigt för sjuksköterskor att ha kunskap och förståelse om. Sjuksköterskors uppgift är att främja den fysiska, psykiska, sociala och existentiella hälsan hos personer de vårdar genom ett personcentrerat arbetssätt. Syfte: Att beskriva upplevelsen av hopp hos personer med lungcancer. Metod: En litteraturöversikt med kvalitativ design och deduktiv ansats. Tretton artiklar inkluderades i resultatet. Polit och Becks modell användes i analysprocessen. Resultat: Analysen resulterade i två teman som beskrev upplevelsen av hopp hos personer med lungcancer. Det första temat var hälso- och sjukvårdens betydelse med tillhörande underteman att ha tilltro till medicinsk behandling och att få ett gott bemötande. Det andra temat var inneboende resurser med underteman att ha en religiös tro, att ha en meningsfull resterande tid och att tänka positivt. Slutsatser: Upplevelsen av hopp är betydelsefull hos personer med lungcancer. Det är en positiv känsla och en önskan kring vad personen vill ska ske i framtiden. Sjuksköterskor har därmed en betydande roll för att stärka hoppet hos personer med lungcancer genom sitt bemötande och förmåga till att arbeta personcentrerat. / Background: Lung cancer is the type of cancer with the highest mortality. When receiving a lung cancer diagnosis, feelings like fear, despair and hope can arise, which is important for nurses to know and understand. The role of the nurses is to promote the physical, psychological, social and spiritual well-being of the people they care for by providing person-centered care. Aim: To describe the experience of hope among people with lung cancer. Method: A literature review with qualitative design and a deductive approach. Thirteen qualitative articles were included in the result. Polit and Beck’s model was used in the analysis process. Result: The analysis resulted in two themes which described the experience of hope among people with lung cancer. The first theme was the significance of healthcare with the associated subthemes to have faith in medical treatment and to receive a good encounter. The second theme was intrinsic resources with the following subthemes: to have a religious belief, to have a meaningful remaining time and to think positively. Conclusions: The experience of hope is meaningful among people with lung cancer. Hope is a positive feeling and a wish for the individual’s future. Nurses have a significant role in empowering the hope of people with lung cancer through their communication and ability to remain person-centered.

Bakgrund: Hjärtsvikt är en kronisk sjukdom som ökar med stigande ålder. Vid hjärtsvikt har hjärtat en nedsatt förmåga att pumpa ut tillräcklig mängd blod till kroppen. Prognosen för personer med hjärtsvikt är förenad med hög morbiditet och mortalitet.  Syfte: Syftet var att beskriva personer med hjärtsvikt och deras upplevelse av dagligt liv.  Metod: Litteraturöversikt med induktiv ansats. 15 kvalitativa artiklar analyserades enligt Fribergs femstegsmodell.  Resultat: Tre huvudteman och sex subteman utformades. Dagligt liv med hjärtsvikt innebär en förändrad kropp med fysiska symtom som även påverkar mentalt vilket skapar begränsningar i vardagen. Livet ställs inför utmaningar där behov av kunskap och olika former av stöd är betydande för att kunna acceptera och fortsätta leva sitt liv trots sjukdom.  Slutsats: Dagligt liv med hjärtsvikt är komplext och innebär en förändrad vardag. Kunskap har en avgörande del i hanteringen av sin situation och behöver individanpassas. Som sjuksköterska är det viktigt att se till personens behov och förutsättningar för att främja delaktighet. Att vara delaktig i sin vård bidrar till ökad kunskap och medvetenhet kring diagnosen. Detta underlättas om sjuksköterskan tillämpar personcentrerad vård. / Background: Heart failure is a chronic disease that is more common with increasing age. Heart failure means that the heart has a reduced ability to pump out enough blood to the body. The prognosis for persons with heart failure is associated with high morbidity and mortality. Aim: To describe people´s experience of daily life with heart failure.   Methods: Literature review with an inductive approach. 15 qualitative articles were analyzed according to Friberg’s five-step model.   Results: Three main themes and six sub themes were found. The daily life with heart failure means a changed body with physical symptoms that also affect mentally which creates limitations in everyday life. They experience challenges where the need for knowledge and various forms of support are significant in order to be able to accept and continue living their lives despite illness. Conclusions: The daily life with heart failure is complex and contributes to changes in everyday life. Knowledge has an important part in managing their situation and needs individual adaption. As a nurse, it’s important to ensure the person's needs and ability to encourage participation. Being involved in their own care contributes to increased knowledge and awareness of the diagnosis. This is possible if the nurse applies person-centered care.