• Refine Query
  • Source
  • Publication year
  • to
  • Language
  • 205
  • 29
  • 7
  • 6
  • 5
  • 5
  • 5
  • 5
  • 5
  • 5
  • 5
  • 3
  • 2
  • 1
  • 1
  • Tagged with
  • 292
  • 292
  • 78
  • 68
  • 57
  • 54
  • 50
  • 45
  • 39
  • 31
  • 31
  • 30
  • 30
  • 29
  • 28
  • About
  • The Global ETD Search service is a free service for researchers to find electronic theses and dissertations. This service is provided by the Networked Digital Library of Theses and Dissertations.
    Our metadata is collected from universities around the world. If you manage a university/consortium/country archive and want to be added, details can be found on the NDLTD website.
251

Hausärztliche Versorgung am Lebensende (HAVEL) / Eine retrospektive Befragung von Hausärzten / End of life care in general practice

Pierau, Andrea 31 March 2014 (has links)
Hintergrund: Die wachsende Anzahl älterer multimorbider Patienten und der damit zunehmende Versorgungsbedarf am Lebensende erfordern eine gut funktionierende Basisversorgung mit dem Hausarzt als zentralem Ansprechpartner. Hausärzte versorgen ihre Patienten zumeist über mehrere Jahre und bis ans Lebensende. Darüber gibt es jedoch bisher keine ausreichenden Kenntnisse. Ziel der Studie: Die Versorgungssituation und Charakteristika hausärztlich versorg-ter Patienten in der letzten Lebensphase aus hausärztlicher Sicht, durch eine retro-spektive Erhebung abzubilden. Methode: Im Raum Hannover und Göttingen wurden 30 Hausärzte (Teilnehmerrate: 19%) mittels eines selbst entwickelten standardisierten Erhebungsbogen zu ihren in den letzten 12 Monaten eines natürlichen Todes verstorbenen Patienten (n = 451) befragt. Erfasst wurden vor allem Daten zur Soziodemographie und Betreuungssituation, zu den Erkrankungen, den Symptomen und der Symptomkontrolle. Neben einer rein deskriptiven Darstellung der Ergebnisse erfolgte ein Vergleich mit Daten aus der Hospiz- und Palliativerfassung (HOPE) 2010. Ergebnisse: Im Mittel hatte jeder teilnehmende Hausarzt 15 Patienten (SD: 7,3; Me-dian: 14,5; Range: 4-36), für die er Angaben im Erhebungsbogen machte. Das durchschnittliche Sterbealter betrug 78,5 Jahren (SD: 12,9; Median: 81; Range: 19-102), 55% der Patienten waren Frauen, der Großteil der Patienten (60%) lebte zu-letzt in der eigenen Wohnung beziehungsweise im eigenen Haus. Obwohl die meisten Patienten sich ein Versterben in häuslicher Umgebung wünschen, verstarben 41% der Patienten im Krankenhaus und nur 22% zu Hause beziehungsweise in einer Alten- oder Pflegeeinrichtung. Das Krankheitsspektrum war vielfältig und zeigte eine Dominanz der chronischen Erkrankungen (beispielsweise des Herz-Kreislauf-Systems und der Psyche). Im Vergleich mit den HOPE-Daten zeigten sich im Spektrum der Erkrankungen und in der Häufigkeit der Symptome deutliche Unterschiede. Die meisten Verstorbenen wurden im Rahmen der allgemeinen hausärztlichen Basisversorgung in der letzten Lebensphase betreut. Die Häufigkeit der Arzt-Patienten-Kontakte nahm zum Lebensende zu. Bei 48% der Patienten war der Hausarzt auch in den letzten 48 Stunden vor dem Tod noch in die Versorgung involviert. Eine palliativmedizinisch spezialisierte ärztliche Betreuung erhielten in der HAVEL-Studie nur 10% der Patienten. Neben der ärztlichen Betreuung spielten Angehörige (bei 49% der Patienten), Pflegedienste (bei 29%) und Pflegeheimpersonal (bei 33%) eine bedeutende Rolle in der ambulanten Versorgung in den letzten Lebensmonaten. Schlussfolgerung: Hausärzte sind unabhängig vom Sterbeort maßgeblich in die Betreuung ihrer Patienten bis ans Lebensende involviert. Die Unterschiede in den Patientencharakteristika sowie in den Versorgungsformen zwischen hausärztlicher und spezialisierter Versorgung am Lebensende sollten in der ärztlichen Aus- und Weiterbildung stärker berücksichtigt werden. Um der aktuellen Versorgungssituation auch in der Forschung gerecht zu werden und über die Qualität der ambulanten Versorgung am Lebensende Aussagen treffen zu können, sind weitere Untersuchungen erforderlich.
252

AIDS and architecture : the study of an interaction : architectural responses to the development of the HIV/AIDS epidemic in KwaZulu-Natal.

Bingham, Kevin Gary. January 2008 (has links)
AIDS has established itself over more than three decades as a major international pandemic3. While initial cases of the disease were documented in 1981 in the USA and Europe, cases in Africa became known at around the same time. It is however probable that the disease existed in Africa long before this time (Pratt, 1986:17). Due to the prominence of the AIDS epidemic and its related opportunistic diseases in South Africa and most acutely in KwaZulu-Natal (Smith, 2002 and South African Department of Health Report 2006) , the associated impact of the need for care of those living with and those affected by the virus has been brought to the fore. The accommodation of these persons occurs in a variety of building forms and types, and may vary depending on the stage within the individual’s health cycle related to the impact of the virus. With the advent of medication, termed anti-retroviral therapy, designed to retard the development of the virus, life expectancy has been extended, but with no confirmed cure and viral resistances, death is inevitable. While those living with the virus may continue to live productive lives for some time, the infirm largely seek care within medical facilities. Should access to formal health services be difficult due to remoteness or a lack of transport, such people are often cared for within the homes of surviving family members – often by children - or by their community. With the largest impact on the population being found within the 20 – 29 age bracket in the late 1990's (Smith, 1999: HIV Positive Results, June 1998), shifting to the 25 – 34 age bracket from 2003 onwards (South African Department of Health Report 2006), tertiary education institutions, through their clinics, have increasingly dealt with the management of student and staff health. Other building types affected by the AIDS epidemic4 include prisons and mortuaries, while care for those remaining behind after the death of family members to AIDS is usually within children’s homes or street shelters. The impact of AIDS on the built environment professions will permeate its way to all involved. Through selected case studies one will observe the impact of the epidemic on existing facilities and examine current methods employed to accommodate the problem. Architects, through the modification of existing structures or through the design of new facilities, are assisting in the struggle. New methods of dealing with the care of patients are being considered as well as alternative and innovative design approaches. This includes the need for flexibility of building layouts and universal design. Most proposals in the researched context require cost effective and workable solutions. Hope for the future lies with the management of the virus through medication, enabling the extension of life expectancies. Architects need to adapt to the incumbent problem while medical researchers develop a workable vaccine to confine HIV/ AIDS to the history books with the likes of Bubonic Plague, Smallpox and Typhus. It is through good architectural design and detailing that Architects can assist in the AIDS fight. This can be achieved firstly through research – gaining an understanding of the AIDS Brief – then designing for the specific needs for the infected and affected. These needs will include comfort, accessibility, anthropometrics, ease of maintenance, affordability, ventilation and illumination conducive to good health, and sustainability. Architects therefore have a major role to play within this epidemic. / Thesis (M.Arch.)-University of KwaZulu-Natal, Durban, 2008.
253

End-of-life transition experiences of ICU nurses : mindful realization /

Moscatel, Sarah J. January 2005 (has links)
Thesis (Ph.D. in Nursing) -- University of Colorado at Denver and Health Sciences Center, 2005. / Typescript. Includes bibliographical references (leaves 139-146). Free to UCDHSC affiliates. Online version available via ProQuest Digital Dissertations;
254

Adaptação transcultural e validação da versão em português de questionário de qualidade de vida para pacientes com câncer em cuidados paliativos no contexto cultural brasileiro / Cross-cultural adaptation and validation of the Brazilian Portuguese version of quality of life questionnaire for cancer patients in palliative care in cultural Brazilian context

Sheilla de Oliveira Faria 07 November 2013 (has links)
Introdução: Como o enfoque principal nos cuidados paliativos é a qualidade de vida, a avaliação deste item é de suma importância para verificar o cuidado proposto ao paciente. Existem poucos questionários específicos para avaliar a qualidade de vida do paciente em cuidado paliativo. Entre eles, o McGill Quality of Life Questionnaire (MQOL) é o que apresenta maior número de validações em outras línguas e as melhores pontuações pelas suas propriedades de medidas. No Brasil existem poucos questionários validados para avaliação da qualidade de vida, e apenas um é específico para pacientes em cuidados paliativos. Objetivos: Produzir uma versão do McGill Quality of Life Questionnaire (MQOL) em português, adaptada ao contexto cultural brasileiro, e verificar a validade e a confiabilidade da versão adaptada. Método: A versão original foi traduzida para o português de acordo com as recomendações da literatura, e então adaptada ao contexto brasileiro a partir de entrevistas iniciais com pacientes com câncer em cuidados paliativos do Instituto de Câncer do Estado de São Paulo (ICESP), até que se obteve uma versão final (MQOL-Br). Esta versão foi retrotraduzida para o inglês e aprovada pela autora da escala original. Para verificar a validade do MQOL-Br, este foi aplicado em conjunto com o EORTC QLQ-C30 (questionário para avaliar a qualidade de vida em pacientes com câncer) e o EGDC-Br (escala graduada de dor crônica Brasil), em entrevista com 101 pacientes da mesma população. A validade clínica do MQOL-Br foi testada a partir de comparação dos escores estratificando os pacientes pela funcionalidade (KPS) e status de atendimento (internado ou não). Para avaliar o grau de associação entre as subescalas do MQOL-Br e a qualidade geral de vida , foi realizada uma análise de regressão linear múltipla. A consistência interna foi avaliada através do alfa de Cronbach. A confiabilidade teste-reteste foi avaliada em uma segunda entrevista com 63 pacientes, entre 2 a 8 dias após a entrevista inicial. Resultados: Observou-se idade média de 62 anos (23-92), equilíbrio no número de pacientes do sexo feminino e masculino e predominância de pacientes com o primeiro grau incompleto. Pacientes com pior performance (KPS <= 60) e pacientes internados apresentaram escores menores do que aqueles com melhor performance ou ambulatoriais. Todas as subescalas e o MQOL-Br total apresentaram boa consistência interna (alfa de Cronbach superior a 0,7). As correlações entre as escalas mostraram validade convergente e divergente e boa validade concorrente da escala produzida. A regressão linear múltipla indicou que as subescalas Existencial e Sintomas físicos tiveram efeitos independentes sobre a qualidade de vida global. Na análise da estabilidade temporal foi encontrado coeficiente de correlação intraclasse (ICC) moderado a bom para todas as subescalas (exceto Suporte, que teve ICC pobre) e escore total do MQOL-Br. Conclusão: Este estudo evidencia a validade e a confiabilidade da versão do Questionário de Qualidade de Vida McGill traduzida e adaptada para o português (MQOL-Br) quando aplicada a pacientes com câncer em cuidados paliativos / Background: As the main focus on palliative care is quality of life, evaluation of this item is very important to check care offered to patients. There are few specific questionnaires to assess quality of life of patients in palliative care. Among them, McGill Quality of Life Questionnaire (MQOL) has greatest number of validations in other languages and best scores for its measurement properties. In Brazil there are few validated questionnaires for assessing quality of life; however, only one is specific for patients in palliative care. Objectives: Produce a version in Brazilian Portuguese of McGill Quality of Life Questionnaire (MQOL) adapted to Brazilian cultural context and check cross-cultural validity and reliability of modified version. Method: Original version was translated into Brazilian Portuguese in accordance with guidelines of literature, and then adapted to Brazilian context through initial interviews with cancer patients in palliative care at São Paulo Cancer Institute (ICESP) until final version was reached (MQOL-Br). This version was back translated into English and approved by the author of original scale. For MQOL-Br validity check, it was applied in conjunction with EORTC QLQ-C30 (questionnaire to assess quality of life in cancer patients) and CPG-Br (chronic pain graded scale Brazil), in interviews with 101 patients from the same population. Clinical validity of MQOL-Br was tested from comparison of scores, stratifying patients by functionality (KPS) and treatment status (admitted or not). To assess the degree of association between MQOL-Br subscales and overall quality of life, it was performed a multiple linear regression analysis. Internal consistency was assessed by Cronbach\'s alpha. Test-retest reliability was assessed in a second interview with 63 patients between 2-8 days after initial interview. Results: It was observed a mean age of 62 years (23-92), balance in number of female and male patients and prevalence of patients with incomplete primary education. Patients with poor performance (KPS <= 60) and inpatients had lower scores than those with better performance or outpatient. All subscales and total MQOL-Br showed good internal consistency (Cronbach\'s alpha above 0.7). Correlations between scales demonstrated convergent and divergent validity and good concurrent validity of scale produced. Multi-regression analysis indicated that Existential and Physical symptoms subscales had independent effects on overall quality of life. Temporal stability analysis showed intraclass correlation coefficient (ICC) moderate to good for all subscales (except Support, which had poor ICC) and MQOL-Br total score. Conclusion: This study demonstrates validity and reliability of the version of Quality of Life Questionnaire McGill translated and adapted to Brazilian Portuguese (MQOL-Br) when applied to patients with cancer in palliative care
255

End of life nursing education consortium grant implementation project

Terkildsen, Sheryl Ramona 01 January 2002 (has links)
This project addressed the continuing education needs of nursing staff and other health care professionals for delivering competent and compassionate palliative or end of life care. The scope of the project included, writing a grant application, training and certification by the end of life Nursing Education Consortium and implementing an education program for staff at the Loma Linda Veterans Affairs medical center.
256

Fysioterapeuters upplevelser av fysioterapi inom palliativ vård. : En kvalitativ intervjustudie

Berggren, Olivia, Fröding, Björn January 2021 (has links)
Bakgrund: Palliativ vård ska ta i beaktande patienters fysiska, psykiska, sociala och existentiella behov. Fysioterapi kan förbättra livssituationen för patienter inom palliativ vård, det finns dock bristande kunskaper inom såväl patientgruppen som bland övriga vårdgivare kring vad fysioterapeuter kan erbjuda patienten i vårdväg. Syfte: Att undersöka fysioterapeuters upplevelser av fysioterapi inom palliativ vård. Metod: Studien utfördes i form av en kvalitativ och explorativ intervjustudie med induktiv ansats. Sju informanter intervjuades efter en semistrukturerad intervjuguide. Data från intervjuerna analyserades enligt en kvalitativ innehållsanalys. Resultat: Analysen av intervjuerna resulterade i fyra huvudkategorier med 15 underkategorier. Kategorierna beskriver patientmötet, förhållningssätt mot patienten och den egna yrkesrollen, individanpassning av såväl behandling som patientmöte samt fysioterapeutens behandlande insatser. Slutsatser: Informanterna beskriver en palliativ vård där fysioterapi sträcker sig bortom rent fysisk behandling. Informanterna beskriver vikten av en individanpassad vård där patienten sätts i fokus. Även vikten av att bygga en relation vilande på trygghet och öppenhet gentemot patienterna lyfts. / Background: Palliative care aims to take in consideration the patients physical, psychological, social and existential needs. Physical therapy could improve the quality of life for patients in palliative care, however there is a lack of knowledge among patients, as well as among other health care professions, about what a physical therapist has to offer in palliative care. Purpose: To study physical therapists experiences from working in palliative care. Method: The study is a qualitative and explorative interview study with an inductive approach. Seven informants were recruited for the study and interviewed using a semi structured interview guide. Data from the interviews were analyzed using a qualitative content analysis. Results: The interview analysis resulted in four main categories with 15 subcategories. The categories describe the patient meetings, the approach towards patients and the own profession, individualization of treatment as well as patient meeting and the experiences of physical therapy interventions. Conclusions: The informants described a palliative care where physical therapy interventions spread over a wider area than strict physical treatment. The informants described the importance of individualized care where the patient is in focus. The study also brought light upon the importance of building a relationship with the patient based on security and openness.
257

Äldre personers symptom i livets slutskede utifrån den palliativa vårdens helhetssyn : en litteraturstudie / Elderly persons' symtoms in the end of life seen from the palliative care holistic perspective : a literature review

Matkovic, Ljiljana January 2016 (has links)
Ca 1.6 miljoner människor i Sverige är 65 år gamla eller äldre. Äldre människor insjuknar i olika sjukdomar som har olika sjukdomsförlopp men själva dödsförloppet är tämligen det samma trots diagnos. När sjukdom inte kan botas blir all vård och behandling som ges lindrande - palliativ vård. Med dagens åldrande befolkning där allt fler äldre patienter behöver tillgång till god omsorg inom olika vårdinstanser, krävs det en välfungerande hälso-och sjukvård samt en bättre tillgänglighet av allmän palliativ vård. Det är viktigt att beakta alla behov den äldre har, det vill säga de psykiska, fysiska, sociala och andliga behoven i syfte att främja den äldres livskvalitet. Att vara beroende av andra och förlora kontrollen över sitt liv sänker livskvalitén hos de gamla och gör att de upplever sig själva som en ”börda” för de andra, både anhöriga och vårdpersonal. Förutom lindring ska palliativ vård bekräfta livet och betrakta döden som en normal process som inte ska fördröjas eller påskyndas. Palliativ vård ska baseras på en helhetssyn. En helhetssyn där kropp, känslor, socialt sammanhang och meningsfrågor är hopflätade. Detta krävs för att kunna se på det totala lidandet. Lidandet är en personlig upplevelse som är förknippad med smärta. Det finns fyra dimensioner inom palliativ vård, alla är lika viktiga och beroende av varandra.  Det är fysisk, psykisk, social och existentiell dimension. Människan är en helhet och reagerar som en helhet. Hur den sista tiden i livet kan gestalta sig varierar från människa till människa.   Syfte med studien var att belysa symptom hos äldre i slutet av livet utifrån den palliativa vårdens helhetssyn.   Metod som användes för denna studie var litteraturöversikt. Resultaten grundas på 16 vetenskapliga artiklar som analyserades utifrån syftet.   Resultat visar att äldre har en bred symptombild i livets slut. De kan genomgå ett fysiskt, psykiskt, socialt och andligt lidande i slutet av livet. Olika symtom påverkar varandra. Av alla fysiska symptom är smärta svårast att uthärda. Resultatet visar att sjukvården har brister i bedömning och behandling vid livets slut bland de äldre.   Slutsatsen är att äldre människor inte har omvårdnadsbehov som skiljer sig från andra i livets slut. Ändå verkar de äldre vara mer utsatta för risker att deras behov inte skulle tillgodoses. De behöver bli sedda i sin helhet, lyssnade på, betrodda och respekterade. Den fysiska smärtan är ofta bara en del av hela döende processen. / Around 1.6 million people in Sweden are 65 years or older. Are diagnosed with various diagnosis with divergent progress of the disease. The death process is relatively the same regardless diagnosis. Once the disease takes over the care becomes all-relieving palliative care.  With today’s ageing population when more elderly patients need access to medical and nursing facilities there is a need of a good functioning health services and better access to palliative care. It is important to take in consideration all the needs of the elderly which is the physical, psychic social and spiritual needs to promote a better quality of life. Losing control over one’s life and being dependent on others can make the elderly people feel as a burden for others, both family and health care personnel. Palliative care should not only give relief but also reinforce life and see death as normal process which can either denied or postponed.  Palliative care should be seen as a whole, where body, feelings and the social surroundings are braided. This is needed to see the complete suffering. Suffering is a personal experience which is associated with pain. There are four dimensions in palliative care and all four are equally important and depend on each other. They are the physical, psychical, social and existential dimensions. The human being is a whole entity and reacts as such. How the last time on earth is shaped varies from person to person Aim of this study was to highlight the symptoms in the elderly at the end of life based on the holistic approach of palliative care. The method used for this study was a literature review. The results are based on 16 scientific articles were analyzed according to the purpose. The results show that elderly have a wide spectrum of symptoms in the end of life. They endure psychic, social, physical and spiritual suffering. The symptoms affect each other. Pain is the most difficult of all the physical symptoms to endure. The results show that the health service has deficiencies both in the assessment and treatment at the end of life for the elderly. The conclusion shows that older people do not have care needs that are different from others in the end of life. It seems though that the older population are at larger risk of not having their needs met. They need to be seen as a whole, listened to, believed in and respected. The physical pain is only a part of the dying process.
258

Oral Interpretation as a Catalyst for Social Awareness Ann's Haven: Hospice of Denton County

Cancilla, Carlajo 08 1900 (has links)
This oral interpretation thesis studies the use of oral interpretation in social contexts. The context chosen was the Hospice movement, which deals with assisting terminally ill persons and their families through the stages of death and bereavement. A readers theatre script was compiled for "Ann's Haven: Hospice of Denton County," which was selected for the locus of this thesis. The script was presented to various civic groups for the purpose of informing the public and eliciting support for Ann's Haven. It was found that oral interpretation is a viable rhetorical tool and is well liked by audiences as a means of public enlightenment.
259

End-of-Life Care Discussions with Doctors: Evidence from the United States and China

Lou, Yifan January 2023 (has links)
Chapter 1 presents the backgrounds and research questions of the dissertation project. Although everyone hopes to die with dignity, a “good death” is often privileged. Inequality in end-of-life care in the United States is striking; older minorities are 3 times more likely to receive intrusive care and experience hospital readmission and less likely to use hospice care and die at home. With the hope to address disparities in end-of-life outcomes, as part of the Affordable Care Act, Medicare expanded its benefit and started to reimburse end-of-life care planning services from 2016. This dissertation examines the roles of health insurance policy and its advocated intervention in ensuring person-centered dying experiences in the United States and the public readiness for establishing a similar end-of-life care policy in China. The second chapter examines whether physician–patient advance care planning (ACP) discussions, the “intervention” embedded in the policy, is effective at prompting end-of-life care planning behaviors and improving end-of-life experiences. I also studied the heterogenous effects by race and ethnicity. I used exit data about 7,282 deceased Medicare-eligible respondents from the Health and Retirement Study (HRS) from 2012 to 2020, a nationally representative biennial survey of U.S. older adults. I conducted latent class analysis to identify different end-of-life experiences and used multinomial logistic regression models to study the relationship between having ACP discussions with doctors and different end-of-life experiences in full and stratified samples by race and ethnicity. Then I used path analyses to test whether completing legal documentation initiated by ACP services explains the effectiveness of the intervention. The results show three types of end-of-life experiences among White, Black, and Hispanic older adults; significant effects of end-of-life care discussions with doctors on uncomfortable dying experiences and extensive use of invasive treatments in the older White population; and the partial mediating role of completion of legal health care documents on the relationship between ACP discussions and end-of-life outcomes. This study identified the limited effectiveness of physician–patient ACP discussions among minority older adults and emphasizes the importance of quality, content (e.g., to cover legal documentation during the conversation), and cultural appropriateness of ACP consultations led by doctors. The third chapter examines the heterogenous intent-to-treat effect of the Medicare policy on older adults’ motivation to plan for care by exploiting policy intervention as a natural experiment. Taking advantage of the longitudinal nature of the HRS, I used core data with 47,982 observations nested in 15,647 individuals across 9 years (2012–2020). I used two quasi-experimental models—interrupted time series analysis and difference-in-difference—to study the care-planning outcomes before and after the policy implementation between older adults eligible or not eligible for Medicare. I studied the heterogenous effects in stratified samples by race and ethnicity, immigration background, and socioeconomic status proxied by education and wealth. I used coarsened exact matching to address the potential bias of the comparison group not being the ideal counterfactual control unit. I found that in the total population, the Medicare policy was associated with a significant increase in the proportion of older adults who completed a living will and designated a durable power of attorney for health care, but not having an ACP conversation. Furthermore, although there were immediate positive policy effects, the increases in ACP outcomes driven by the ACA Medicare benefit expansion were not sustained. Finally, I found no evidence that the ACA Medicare benefit expansion was effective in improving the rates of ACP among Black, Hispanic, Asian, Native American, or non-U.S.-born older adults. I also identified heterogeneous policy effects by socioeconomic status. I discuss promising recommendations for health care policy and practice to improve the participation rate of end-of-life care planning. Chapter 4 explores the feasibility of encouraging physicians to discuss end-of-life care wishes with older patients in China. Knowledge of a medical diagnosis is critical for end-of-life decision making. However, a patient’s right to know their diagnosis is neither guaranteed nor protected by law in China. Doctors typically inform family members of the patient’s illness diagnosis and prognosis and let them decide whether to disclose this information to the patient. This study examined middle-aged and older Chinese adults’ preferences for disclosing their and significant others’ diagnoses and whether sociodemographic, economic, and cultural factors were associated with these preferences. The research team surveyed 571 adults aged 50 or older in Shanghai from 2021 to 2022. The outcome measures are preferences for diagnosis disclosures, including whether and to whom diagnoses should be disclosed. I characterized preference types using latent class analysis and estimated multinomial logistic regression to identify the covariates associated with each preference type. Three latent classes were identified. The transparent group (34%) believed patients, whether self or a significant other, should be informed of their diagnoses. The contradictory group (50%) held conflicting attitudes; they preferred to know their diagnosis but preferred that significant others not be informed of their diagnoses. The avoidant group (16%) preferred not to know their diagnosis or to disclose significant others’ diagnoses to them. Familism attitudes were positively associated with holding contradictory views. Experiences with hospitalization and medical decision-making for family members were associated with holding transparent views. I discuss the importance of illness disclosure for honoring patients’ autonomous decision-making.
260

Exploring Decisional Conflict and Symptoms Experienced by Bereaved ICU Surrogates After a Loved One’s Cardiac Arrest

DeForge, Christine Elizabeth January 2023 (has links)
This dissertation aims to enhance our understanding of the experiences of surrogates (e.g., family, close friends) who make medical decisions for a loved one in the intensive care unit (ICU) after a cardiac arrest. Nearly 500,000 Americans experience a cardiac arrest annually; given high mortality (80%-90%), most surrogates become bereaved. For those who receive post-cardiac arrest care in an ICU, almost three in four surrogates make decisions to limit life-sustaining treatments. The burden of medical decision-making for a loved one has been well-documented and those who serve as surrogate decision-makers in the ICU are known to experience symptoms (e.g., depression, post-traumatic stress) for months after their loved one’s hospitalization. However, it is unknown to what extent decision-making experiences near a loved one’s end-of-life influence symptom burden among bereaved surrogates after cardiac arrest. Decisional conflict, uncertainty about which course of action to take, is reported by half of surrogates faced with ICU treatment decisions and one in five report regret around their decisions after 6 months. Following a cardiac arrest, prognostic uncertainty can complicate surrogate decision-making and potentially worsen decisional conflict and/or regret. The overall objective of this dissertation is to inform future interventions to improve outcomes for this highly vulnerable group. The dissertation study aims were to (1) evaluate the efficacy of interventions for ICU surrogates facing end-of-life decisions, (2) explore differences in surrogate decision-making experiences by level of decisional conflict reported around end-of-life decisions after cardiac arrest, (3) assess physical and psychological symptoms among surrogates during the first 6 months of bereavement after a loved one’s cardiac arrest, and (4) explore relationships between decisional conflict, decision regret, and symptoms. To address these aims, three studies were conducted. Study 1 was a systematic review and meta-analysis to evaluate the efficacy of interventions to improve symptoms among surrogates whose loved one had either died in the ICU or had high predicted likelihood of mortality. The study demonstrated that interventions have yielded only small, significant improvement in depression and post-traumatic stress at 3 months and anxiety at 6 months; findings derived from the meta-analysis have moderate-to-very-low certainty of evidence and have potentially limited clinical utility. Most interventions were delivered in the ICU, suggesting that different approaches (e.g., beyond the ICU) warrant exploration. Studies 2 and 3 report findings from a convergent mixed methods study of bereaved cardiac arrest surrogates. Study design was informed by the Integrative Risk Factor Framework for the Prediction of Bereavement Outcome which includes various inter- and intrapersonal risk factors in addition to bereavement-related stressors that influence outcomes such as symptoms. Surrogates were recruited and enrolled ~1-month after the death of their loved one and were followed through 6 months. Survey data were collected at ~1-, 2-, 3-, and 6-months. Most surrogates also completed interviews which were conducted at ~1-month and 3-months. Study 2 aimed to explore differences in surrogate decision-making experiences by decisional conflict reported around end-of-life decisions in the ICU. Among the 16 surrogates who completed both surveys and interviews at ~1-month, decisional conflict survey scores were relatively low with more than half reporting no decisional conflict. Three themes emerged from interview data, two related to decision-making experiences and one related to broader experiences during the first month after the loved one’s death. Compared to those who reported no decisional conflict, those who did described lack of clarity around their loved one’s preferences for treatment, less support from other family or clinicians, and a poorer understanding of medical treatments or prognosis. All surrogates described challenges navigating life after the loss. Qualitative data provided insight into limitations of retrospective assessment of decisional conflict, highlighted opportunities for enhanced measurement of the construct among surrogate decision-makers, and identified potential areas of focus for future interventions. Study 3 aimed to assess physical and psychological symptoms during the first 6 months of bereavement and explore relationships between decisional conflict, decision regret, and symptoms. Findings demonstrated that more than a third experienced high grief intensity and/or post-traumatic stress 6 months after medical decision-making. Strong correlations were seen between 1-month and 6-month symptoms (i.e., depression, post-traumatic stress, fatigue, sleep disturbance), suggesting that those with high symptom burden early on are likely to have symptoms that persist. Decisional conflict moderately correlated with decision regret at 6 months which moderately correlated with other psychological symptoms (i.e., anxiety, post-traumatic stress, grief intensity). The exploratory findings suggest that early screening may be helpful in identifying surrogates at highest risk for poor outcomes at 6 months and may help target future interventions towards those who need them most. This dissertation makes valuable contributions to our current understanding of the experiences of surrogate medical decision-making near a loved one’s end-of-life in the ICU after cardiac arrest and of surrogate experiences during bereavement. Chapter 5 summarizes each study, reviews key findings, identifies strengths and limitations, and discusses implications for future research, clinical practice, and health policy. Together, these studies support the need for enhanced care for surrogates bereaved after a loved one’s cardiac arrest/critical illness. Surrogates described the burden of medical decision-making near a loved one’s end-of-life in the ICU and the challenges encountered during bereavement. Findings suggest that end-of-life decision-making experiences may influence symptoms through the first 6 months of bereavement. Novel approaches to supporting surrogates are warranted to improve health outcomes for this important, vulnerable group.

Page generated in 0.1011 seconds