This analysis of secondary data collected from family members of nursing home residents in North Texas (n = 422) used a mixed methods approach to determine if there is a difference in perspectives on quality care among family members of Alzheimer’s/Dementia Special Care Unit (ADSCU) residents compared to those of non-ADSCU residents. Descriptive content analysis was used identify and condense responses to an open-ended question into four meaningful categories of qualities of care. An independent t-test was employed to determine if there was a difference between family members of ADSCU residents and family members of non-ADSCU residents regarding their rating of their loved-ones’ nursing home on the important qualities of care they identified from the open-ended question. Closed-ended questions were organized into indices of these qualities of care, and ordinary least square regression was employed to determine if there were significant differences between perceptions of family members of ADSCU residents and those of non-ADSCU residents regarding care their loved-ones are receiving on these qualities of care, controlling for frequency of visit.

Family members and caregivers of persons who experience mental disorders may themselves require support and treatment services to help them cope. Mental health agencies in Illinois serve clients with mental illnesses but the extent to which they also provide services to and involve family members and caregivers in the treatment process is unclear. In addition, it is unclear the extent to which the mental health treatment system provides support, including coping skills training and education, to family members and caregivers of persons with mental illnesses. The purpose of this study was to gather information regarding the support that caregivers of persons with mental illnesses were able to receive from the treatment agencies. In addition, caregiver perspectives on their caregiving burden and their ability to become involved in their loved ones’ treatment process were solicited.Datawere gathered through a series of semi-structured interviews with family members of persons with mental illnesses. The interview data were then analyzed using an Interpretive Phenomenological Analysis approach (Smith and Nizza, 2022). The group experiential themes that arose revealed that while some caregivers were able to access support from mental health agencies, others were not. Some of those who were not able to access support from mental health agencies were able to access support from other sources, such as family members, friends, and groups like the National Alliance on Mental Illness (NAMI). However, there were a minority of participants who did not have access to support and expressed significant emotional and financial burden. Caregivers were also mixed in their reports of treatment involvement. Some caregivers were able to be involved in treatment, safety planning, and medication management decisions for their loved ones. Others were not allowed to be involved, despite requests. An unanticipated theme arose regarding academic accommodations for adolescents with mental illnesses and the difficulties caregivers had securing accommodations for their loved ones. Another aspect of the mental health treatment process arose when caregivers brought up the topic of how mental illnesses were managed in ER settings prior to psychiatric hospitalization. The findings from this study suggest that caregivers have mixed experiences with being able to access support from either the mental health agencies or other sources. In addition, Caregivers were not always allowed to be involved with their loved ones’ treatment, even when their intentions were to assist their loved ones in achieving therapeutic goals. Suggestions for improvements to mental health treatment processes and support that could benefit caregivers were also discussed.

A severe burn is a trauma associated with long lasting consequences, not only for the survivor but also for the family. Although it is recognized that family members are central in providing social support for the patients, previous research has not focused extensively on this group. The aims of this thesis were to increase knowledge about psychological symptoms and health-related quality of life (HRQoL) in family members of patients with burns, as well as to explore their experiences of burn care and rehabilitation. The research questions were approached using quantitative and qualitative methods. The results showed that most family members demonstrate normal to mild levels of psychological symptoms, while one third demonstrate moderate to severe symptoms during care. The symptoms decreased over time and could be predicted to a certain degree by early symptoms. Further, family members’ report of HRQoL is similar to that of the general population. An improvement is seen over time and HRQoL could be predicted in part by earlier life events and psychological symptoms. Family members’ experiences were explored in an interview study. Qualitative content analysis revealed that the time in hospital is stressful, although there were experiences of a positive character.  Family members might benefit from being cared for in a more individualized way. The communication between health care providers and the family members could be improved. Finally, a qualitative content analysis revealed that family members’ experiences and views concerning support is highly individual. There were experiences of sufficient support as well as lack of professional support. Treatment of family members should be modified according to personal circumstances, and it is important to actively include family members in the care process, both before and after discharge. In summary, being a family member of a burn survivor is a distressful experience, not only during care but in many cases also after discharge. The treatment of family members within burn care should be individualized. Some persons are more vulnerable than others and it might be possible to identify those in need of support while care is still ongoing.

Uppmärksamhet och stöd till intensivvårdspatienters anhöriga kan ibland bli begränsad då sjuksköterskan ofta fokuserar på patientens behov och glömmer bort de anhöriga. Eftersom möten med anhöriga sker frekvent inom sjuksköterskeyrket är det därför viktigt att sjuksköterskan har insikt och förståelse för vad anhöriga upplever som stödjande. På en intensivvårdsavdelning är tillståndet hos patienten ofta kritiskt och de anhöriga behöver stöd för att hantera, förstå och anpassa sig till situationen. Syftet med den strukturerade litteraturstudien är att belysa anhörigas upplevelser av sjuksköterskans stöd inom intensivvård. Sammanlagt har 10 vetenskapliga artiklar såväl med kvalitativ och kvantitativ ansats analyserats tematiskt och analysen gav fyra kategorier, Tillit och förtroende, Närvaro och delaktighet, Tröst och empati samt Tillgänglighet och kontinuitet. Sammanfattningsvis finns det ett stort behov av att få stöd som anhörig. De anhöriga är i allmänhet nöjda med stödet de får av sjuksköterskan inom intensivvården men det behövs ytterligare forskning om vad för stöd som behövs samt hur stödet upplevs av de anhöriga. / The attention and support given to family members at the Intensive Care Unit can sometimes be limited due to that the nurses often focus on the patient's needs and forget about family members needs. Since nurses meet family members on a daily basis it is important for them to know what family members find supportive. The condition of patients at the intensive care unit is often critical and family members need support to cope, understand and adapt to the situation. The aim of the study was to highlight family members´ experiences of support from nurses at the intensive care unit. A structured literature review was conducted in which 10 articles with both qualitative and quantitative design underwent thematic analysis. The analysis gave four categories: Trust and reliance, Presence and participation, Comfort and empathy and Availability and continuity. To sum up; family members at the Intensive Care Unit have a great need of support. Family members are in general satisfied with the support, but there is need for more research in what kind of support they require and how family members experience the support.

Bakgrund: Stroke är en av de vanligaste orsakerna till funktionsnedsättningar och död i Sverige. De flesta som fått en stroke blir beroende av stöd från sina anhöriga. Anhöriga bör delta i vården av den som fått stroke för att underlätta i deras tillvaro. Syfte: Att beskriva upplevelsen av att vara anhörig till en människa som har fått stroke. Metod: En litteraturstudie med tio kvalitativa vetenskapliga artiklar med beskrivande syntes. Resultat: Först kände de anhöriga en osäkerhet över situationen, en känsla av kaos uppstod och de var oroliga inför framtiden. Sedan kände de anhöriga sig ensamma i tillvaron, de upplevde brist i stödet från hälso- och sjukvården samt obehag över det stora ansvaret som nu följde. De anhöriga började sedan acceptera framtiden, de kände tacksamhet över sin livssituation och de började omprioritera sitt liv. Slutsats: Genom att låta sjuksköterskor ta del av de anhörigas upplevelser kan de ge bättre och mer anpassad information och stöd individuellt till de anhöriga. Detta skulle ge patienten ett bättre stöd och minska onödigt lidande. / Background: In Sweden, Stroke is one of the most common causes to disability and death. Stroke can provide serious consequences and most of patients need to be helped by their close family members. It is important for close family members to be involved in the care of patients who have had a stroke to facilitate the life. Aim: To describe the experience of being a close family member of a person who has had a stroke. Method: A literature review based on ten qualitative scientific articles with descriptive synthesis. Result: At first, close family members felt the uncertainty of the situation because of a sense of chaos and worries about future. At second, they felt loneliness in life because they experienced a lack of support from health care and overwhelming responsibility that followed. Lastly, the family members accepted the future because they felt gratitude for their lives and they began to re-prioritize their life. Conclusion: By allowing nurses to take more knowledge of the family members' experience, they can understand why it is important to provide better and more detailed and individual support to the family members. This would give the patient a better support and reduce unnecessary suffering.

Introdução: Os transtornos mentais, além de seus sinais e sintomas, por possuírem uma história de preconceito e descrédito, ainda hoje geram tanto nos doentes quanto nos que os cercam, dificuldades que interferem no seu cotidiano. Com o advento da Reforma Psiquiátrica, novos modelos de atenção foram criados estimulando a reinserção do doente na família e na sociedade. O CAPS surge então como um serviço que acolhe indivíduos com transtornos mentais, oferecendo atendimento terapêutico individual e em grupo, consulta médica e outras atividades. Os projetos terapêuticos individuais são voltados para o tratamento e para a reabilitação psicossocial, com iniciativas que incluem a família. Esperando contribuir para a atenção implementada pelos profissionais do serviço com elementos que possam orientar as intervenções, buscando maior eficácia e adesão aos tratamentos, este estudo teve por Objetivo caracterizar o perfil da população atendida no CAPS e as suas percepções da doença, tratamento e implicações psicossociais além de compreender como encaram sua convivência com a doença mental. Metodologia: Optou-se pela pesquisa descritiva, através da qual os dados foram coletados, analisados, classificados e interpretados. Foram entrevistados 65 pacientes e 53 familiares de pacientes em tratamento no CAPS de Pindamonhangaba, nos meses de setembro e outubro de 2008. Os instrumentos utilizados foram dois questionários com perguntas fechadas elaborados um para o paciente e outro para a família. A cada entrevistado eram explicados os objetivos da pesquisa, a forma como ela participaria do estudo, bem como o uso das informações por ela cedidas. Os dados coletados foram tabulados e os resultados foram submetidos à análise estatística comparando-se as posições dos usuários e de seus familiares frente ao cuidado relacionado aos aspectos clínicos, demográficos e do ambiente. Foram aplicados os Testes do Qui-quadrado (x2) e o de Fisher. A discussão teve por base a literatura sobre o tema. Dos pacientes, 80% tinham entre 31 e 60 anos e dos familiares, 75% apresentaram idade superior a 46 anos. Dois grupos de diagnóstico se destacaram: os esquizofrênicos e os portadores de transtorno bipolar. Um terço dos pacientes não souberam informar o próprio diagnóstico. Os familiares são constituídos em sua maioria por pais e irmãos de pacientes. Apesar de apresentarem bom nível escolar apenas 4 trabalham o que representa uma frustração para o paciente. Menos de um terço dos familiares trabalham e, mesmo assim, somente a metade participa de atividades do CAPS, especialmente reuniões de família e consultas médicas. As oficinas terapêuticas além de ajudar o paciente no processo de ressocialização e conhecimento da própria doença, servem para estabelecer vínculos e parcerias entre equipe, usuários e familiares. Mesmo a família considerando grande sua sobrecarga, sente-se otimista com relação ao futuro e satisfeita com a vida. O paciente mesmo tendo consciência de que a doença transformou seu cotidiano, também se sente otimista e satisfeito com a vida. Conclusões: Os transtornos mentais geram dificuldades nas relações pessoais e sociais, entretanto, observa-se nestas pessoas uma capacidade especial para enfrentar as adversidades, ser transformados por elas, e superá-las. / Introduction: Mental diseases, due to its symptoms, have a long history of prejudice and disbelief, and even today it brings difficulties to patients and people around them, interfering in their everyday life. With The Psychiatrist Reform, new approaches were created to stimulate the re-insertion of the patient into his family and society. So CAPS (a psychosocial care center) surges as a service that gathers individuals with mental diseases, offering them group and individual therapy assistance, medical help and etc. The individual therapeutic projects are about psychosocial treatment and rehabilitation, and it includes their family members. Hoping to contribute to this areas professionals with elements that may direct their interventions, and then result in a higher efficacy and acceptance to treatments, this study had the Objective of tracing the profile of people helped by CAPS and its psychosocial implications, treatment and perception of the disease, and also obtain an understanding of how they face and handle with their mental disease. Methodology Descriptive research was chosen, and so through this method data was collected, analyzed, classified and interpreted. 65 patients and 53 patients relatives being treated at CAPS in Pindamonhangaba were interviewed, during the months of September and October in 2008. Two questionnaires with closed questions were used as instruments for the research, being one formulated for the family and the other for the patient. For each interviewed person, the objective and the way the research would participate into the study was explained, as well as the use of the information obtained by it. The collected data was tabulated and the results were submitted to statistical analysis, observing the patients position and their relatives about clinical, environmental and demographic care. Fischer and chi-squared tests were applied, and the discussion had the literature of the theme as its basis. 80% of the patients were between 31 and 60 years old, and about the family members, 75% were older than 46 years old. Two groups were outlined: schizophrenic and bipolar. One third of the patients couldnt tell about their own diagnosis. The family members are mostly made of patients parents and siblings. Although they had good educational level, only four of them work, which is frustrating for them. Less than one third of the family members work, but only half participate in CAPS activities, especially family reunions and medical appointments. Therapeutic workshops not only help patients to get to know their illness and in their rehabilitation process but also make bonds and partnerships among the staff, patients and family members. Although the family feels the difficulties, looks at future in an optimistic way and is satisfied with life. Moreover patients are conscious about the big changes the disease brought into their lives; they also feel optimistic and satisfied. Conclusions: Mental diseases bring difficulties in social and individuals relationships. However, we could see in these people an extraordinary ability of facing and overcoming their adversities.

Family members of surgical patients experience anxiety due to lack of consistent communication during the surgical process. Attending to the needs of the surgical patient's family members is an important factor easily forgotten in a busy clinical arena. The purpose of this project was to decrease the surgical patient's family member's anxiety by providing family members with timely and consistent information regarding the patient's progress through surgery. The theoretical foundation used was general systems theory showing that a change in one part of a system leads to change in the whole system with the use of improved communication and feedback. The key question asked was whether an electronic information system could provide additional information in conjunction with personal interaction to reduce the family member's anxiety. The project design was a prospective, randomized, posttest design in a single-center study using the State-Trait Anxiety Inventory Survey for Adults (STAI). The sample size was 80 surgical patients' family members. Results using the Wilcoxon-Rank-Sum test indicated that the addition of an electronic information display was unable to reduce STAI scores. The medians for the State portion of the survey were .823 across all categories for both the control and intervention groups. The medians for the Trait portion of the survey for both the control and intervention groups were .118 with p >05. Although the data suggests retaining the null hypothesis, a significant social change was the staff's heightened awareness of the surgical patient's family's vulnerability and the need for communication during the perioperative phase.

The focus of the thesis is on violent offenders with schizophrenia and their relatives. The aims were to explore incidence of violent crimes, the extent to which family members were victims, to investigate individual background factors among violent offenders, and to identify psychotic symptoms and triggering factors associated with fatal violence. In addition, parents were interviewed to build an understanding of their experiences and emotional reactions. One study examined all 369 male individuals who had committed a violent crime (assault, homicide or attempt to any of these crimes), who in a pre-trial forensic psychiatric evaluation (FPE) during 1992-2000 were diagnosed with schizophrenia, and who were referred to forensic psychiatric treatment. Although the majority of the 615 victims was unacquainted to the offenders, family members or male acquainted were most at risk of being severely injured or killed as victims. Background factors were studied for the 207 Swedish offenders who for their first time were subjects of a FPE during the study period. There were indications that those offenders who targeted family members had an earlier onset and more severe course of their mental illness. During the study period, 48 offenders committed homicides. Of the 52 victims, 83% were family members or acquainted to the offender. Those who killed a family member had more often delusions and/or hallucinations, were less often intoxicated, had to a lesser extent committed a previous violent crime and they were younger at the time of the homicide. Parents, who were interviewed, were very emotionally involved in their adult sons, although they were not living together. Ignorance regarding the diagnosis of their son and his criminality negatively influenced the contacts, both between parent and son and between parent and professionals in psychiatry. However, the referral to forensic psychiatric treatment gave the parents hope for a positive development.

Preeclampsia and molar pregnancy are two devastating placental pathologies characterized by an immature proliferative trophoblast phenotype accompanied by excessive cell death. It is therefore of paramount importance to study the regulation of cell fate in the placenta, to gain a further understanding of the mechanisms that contribute to these diseases. In this dissertation we report that during normal placental development and in preeclampsia, Matador (Mtd), a pro-apoptotic member of the Bcl-2 family, has a dual function in regulating trophoblast cell proliferation and death. Importantly, we reveal a novel role of Mtd-L in promoting cyclin E1 expression and cell cycle progression. Of clinical importance, we also identify that both cyclin E1 and the CDK inhibitor p27, are increased in severe early onset preeclampsia. However, the inhibitory function of p27 in this pathology may be hampered due to its increased phosphorylation at Ser10, resulting in its nuclear export. Of equal importance, data presented demonstrate that placentae from severe early onset preeclampsia display a molecular profile distinct from late onset preeclampsia or intrauterine growth restricted pregnancies. In the final data chapter we demonstrate that Mtd is highly expressed in molar tissue, where it localizes to both apoptotic and proliferative cells. Our data suggests that an abundance of Mtd and cyclin E1 in conjunction with the low level of p27 may contribute to the hyperproliferative nature of the disorder. The body of work in this dissertation uncovers novel insights into the regulation of trophoblast cell fate. Importantly, the impact of Mtd on cyclin E1 to promote G1-S transition is a novel mechanism found to regulate trophoblast cell proliferation in normal and pathological placentation. Equally important is our identification of molecular differences between placental pathologies that may help to differentiate early and late onset preeclampsia, IUGR and molar pregnancy.

Preeclampsia and molar pregnancy are two devastating placental pathologies characterized by an immature proliferative trophoblast phenotype accompanied by excessive cell death. It is therefore of paramount importance to study the regulation of cell fate in the placenta, to gain a further understanding of the mechanisms that contribute to these diseases. In this dissertation we report that during normal placental development and in preeclampsia, Matador (Mtd), a pro-apoptotic member of the Bcl-2 family, has a dual function in regulating trophoblast cell proliferation and death. Importantly, we reveal a novel role of Mtd-L in promoting cyclin E1 expression and cell cycle progression. Of clinical importance, we also identify that both cyclin E1 and the CDK inhibitor p27, are increased in severe early onset preeclampsia. However, the inhibitory function of p27 in this pathology may be hampered due to its increased phosphorylation at Ser10, resulting in its nuclear export. Of equal importance, data presented demonstrate that placentae from severe early onset preeclampsia display a molecular profile distinct from late onset preeclampsia or intrauterine growth restricted pregnancies. In the final data chapter we demonstrate that Mtd is highly expressed in molar tissue, where it localizes to both apoptotic and proliferative cells. Our data suggests that an abundance of Mtd and cyclin E1 in conjunction with the low level of p27 may contribute to the hyperproliferative nature of the disorder. The body of work in this dissertation uncovers novel insights into the regulation of trophoblast cell fate. Importantly, the impact of Mtd on cyclin E1 to promote G1-S transition is a novel mechanism found to regulate trophoblast cell proliferation in normal and pathological placentation. Equally important is our identification of molecular differences between placental pathologies that may help to differentiate early and late onset preeclampsia, IUGR and molar pregnancy.