The experience of dealing with end-stage cancer in a family member has been reported to be stressful. One source of stress experienced by family members may be dissatisfaction with care received by the patient and themselves. For health professionals to provide care that promotes family satisfaction, it is essential to measure this phenomenon and understand the elements that contribute to satisfaction. An examination of the literature revealed four competing explanatory theories of satisfaction, none of which has solid empirical support. Moreover, these theories had not been tested with families or those experiencing cancer care in particular. Therefore, the aim of this research was to test these alternative theories using theoretical and empirical modeling with the expectation that a useful model would be identified to guide clinical practice of families in terminal care situations. The theories tested were: (1) Vroom's Fulfillment Theory, (2) Porter's Discrepancy Theory, (3) Thibaut and Kelley's Social Comparison Theory, and (4) Ajzen and Fishbein's Expectancy Value Theory. A correlational design with a causal modeling methodology was used. One hundred and nine family members of patients with advanced cancer were obtained from three different palliative care services. Five instruments were used to collect data: (1) FAMCARE Scale, (2) F-Care Needs Scale, (3) F-Care Expectations Scale, (4) F-Care Perceptions Scale, and (5) a short demographic questionnaire. Data analysis included use of descriptive statistics to summarize the sample in terms of demographic variables, reliability and validity testing of the instruments, and theoretical and empirical model testing using multiple regression techniques and residual analysis. Of the four theories tested, Discrepancy theory was the most credible, accounting for 68 percent of explained variance in family care satisfaction. Empirical modeling resulted in identification of the Family Care Satisfaction Model, which explained 78 percent of the variance in care satisfaction. Implications for theory construction and clinical practice are presented and recommendations for further research offered. The family constitutes perhaps the most important social context within which health and illness occur. As more families are required to care for dependent or ill members at home, understanding the needs, expectations, and satisfactions with care experienced by families will become increasingly important.

Bakgrund: Den palliativa vården ska bygga på symtomlindring och livskvalité för den döende. Den ska också finnas som ett stöd till anhöriga som är en viktig pusselbit i den palliativa vården. Omvårdnadsteoretikern Joyce Travelbee har använts som grund i litteraturstudien vilket innebär att se människan utifrån en helhetssyn och veta att människan är en unik varelse. Syfte: Att utifrån aktuell forskning belysa anhörigas situation inom palliativ vård. Metod: En litteraturöversikt som baseras på 13 vetenskapliga artiklar med kvalitativ metod. Resultat: Resultatet visade på att de anhöriga var omgivna av många känslor som till exempel osäkerhet och medlidande. Det visade sig också att många anhöriga var i behov av att få prata med vårdpersonal kring döden. Deltagarna tyckte också det var viktigt med en personal som visade empati och att det var kontinuitet bland vilka i personalen som tog hand om patienten. Konklusion: För att kunna ge de anhöriga en bra upplevelse av vården vid livets slut bör de erbjudas samtal om döden. Vårdpersonalen bör vara kompetent och empatisk. Det är också viktigt för de anhöriga att det var samma personer från personalen som tog hand om deras anhörige då det skapar en känsla av trygghet. / Background: Palliative care should be based on symptom relief and quality of life for the dying. The care should also be available as a support to families, they are an important part of the palliative care. Nursing theorist Joyce Travelbee was the basis of this study. Travelbee use a holistic approach and says that a person is a unique being. Aim: Illuminate family members' situation in palliative care based on current research. Method: A literature review based on 13 scientific articles with qualitative method. Result: The result showed that the relatives experienced many different emotions, such as insecurity and compassion. It was also found that many families wished to communicate about death with professionals. Relatives wished that the proffesionals would be competent and empatic. It was also good with professionals that were periodic, it created a sense of security for the relatives. Conclusion: In order to give the families a good experience of care at end of life, they must be offered conversation about death. The nursing staff should be empathetic, continuous and competent.

Sammanfattning    Bakgrund: Diagnosen av en obotlig sjukdom kan förr eller senare leda till att personen blir i behov av palliativ vård. I denna situation är hopp oftast en viktig del i att fortsätta leva och uppleva välbefinnande samt en god livskvalitet. Syfte: Syftet med denna litteraturöversikt var att beskriva upplevelse av hopp hos personer som vårdas palliativt. Metod: En litteraturöversikt genomfördes där 11 artiklar med kvalitativ design inkluderades och analyserades deduktivt med hjälp av Herth Hope Index. Artikelsökningen gjordes i databaserna CINAHL och PsycINFO. Resultat: Trots en dålig prognos och medvetandet om att döden närmar sig fortsatte deltagarna i studierna att hoppas och sätta upp framtida mål. Hoppet påverkades både positivt och negativt beroende på det förflutna, nuet och framtiden. Det som främjade hoppet mest visade sig vara familj och närstående.  Vissa deltagare tyckte att det inte fanns något att hoppas på då framtiden såg mörk ut. Tron på Gud/och eller Jesus samt högre makter hjälpte deltagarna att upprätthålla samt öka hopp. Slutsatser: Resultatet som framkom kan ge en vägledning för hälso- och sjukvårdspersonal om hur personer som vårdas palliativt upplever hopp och på vilket sätt det kan främjas, utökas och vad det är som gör att hopp upprätthålls. Nyckelord: erfarenheter, förhoppningar, livets slutskede, obotliga sjukdomar / Experiences of hope among people receiving palliative care - A literature review Summary   Background: The diagnosis of an incurable disease may sooner or later lead to the need for palliative care. In this situation, hope is usually one of an important part in continuing to live and experience well-being as well as a good quality of life. Purpose: The aim of this literature review was to describe the experience of hope among people receiving palliative care. Method: A literature review was performed where 11 articles with a qualitative design were included and with the help of Herth Hope Index analyzed deductively. The article search was made in the CINAHL and PsycINFO databases. Result: Despite a bad forecast and the awareness that death is approaching, the participants in the studies continued to hope and set future goals. Hope was affected both positively and negatively, depending on the past, the present and the future. What promoted hope most proved to be family and related. Some participants thought there was nothing to hope for when the future looked dark. Faith on God / and or Jesus as well as higher powers helped participants to maintain and increase hope.Conclusion: The result that emerges can provide guidance for health professionals about how palliative patients experience hope and how it can be promoted, expanded and what makes hope maintained.   Keywords:  expectation, experience, incurable diseases, terminal care

The growing older adult population, their age-related morbidities, and lifelimiting chronic illnesses increase the demand for quality yet cost-effective end of life (EOL) care. Losing a loved one creates emotional turmoil, heightened uneasiness, and EOL uncertainties for family members. Understanding the complex needs of family members and supportive actions deemed most significant to them can guide nurses to enhance EOL care, encouraging palliation and peaceful death experiences. This study used a qualitative descriptive exploratory design guided by story theory methodology to explore the dimensions of the health challenge of losing a loved one who had been in an acute care setting during the last three months of life, the approaches used to resolve this health challenge, and turning points that prompted decisions about a loved one’s care with 15 older adults residing in a Continuing Care Retirement Community (CCRC) in Southeast Florida. Theoretical grounding for this study was Watson’s (1988, 2002) theory of human caring and Smith and Liehr’s (2014) story theory. Older adults’ stories were analyzed through theory-guided content analysis. Themes that describe the health challenge include moving from painful holding on to poignant letting go, uneasiness that permeates everyday living and precious memories, patterns of disconnect that breed discontent, and pervasive ambiguity that permeates perspectives about remaining time. Approaches to resolve this challenge include active engagement enabling exceptional care for loved ones, appreciating the rhythmic flow of everyday connecting and separating to get by, and embracing reality as situated in one’s lifelong journey. Failure to establish normalcy, coming to grips with abrupt health decline/demise, and recognition – there’s nothing more to do – were the turning points identified by CCRC residents. Older adults’ vivid recollections of losing a loved one and willingness to share EOL concerns as well as recommendations regarding support of family members who are facing this challenge serve as invaluable guidance for improving EOL care for dying patients and their family members. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2016. / FAU Electronic Theses and Dissertations Collection

by Ho Mun-Wan, Audrey. / Thesis (Ph.D.)--Chinese University of Hong Kong, 1991. / Includes bibliographical references. / Title Page --- p.i / Thesis Committee --- p.ii / Table of Contents --- p.iii / Abstract --- p.ix / List of Figures --- p.xii / List of Tables --- p.xiv / List of Appendices --- p.xviii / Acknowledgements --- p.xxi / Statement of Originality --- p.xxiii / Chapter CHAPTER I --- INTRODUCTION: STATEMENT OF RESEARCH PROBLEM --- p.1-11 / Chapter 1.1 --- Introduction --- p.2 / Chapter 1.2 --- Death and Quality of Life --- p.3 / Chapter 1.3 --- Pain and Quality of Life --- p.6 / Chapter 1.4 --- Measuring Quality of Life in Chinese Population --- p.8 / Chapter 1.5 --- The Research Problem and Sample --- p.10 / Chapter CHAPTER II --- LITERATURE REVIEW AND CONCEPTUAL FRAMEWORK --- p.12-62 / Chapter 2.1 --- Introduction --- p.13 / Chapter Part A: --- The Concept of Quality of Life / Chapter 2.2 --- Definitions of Quality of Life --- p.14 / Chapter 2.3 --- Towards a Structural Definition of Quality of Life --- p.19 / Chapter 2.4 --- Quality of Life: Subjective or Objective? --- p.22 / Chapter 2.5 --- Quality of Life and Social Cultural Context --- p.28 / Chapter Part B: --- Ideology and Psychology of Death and Dying / Chapter 2.6 --- Chinese Ideas on Death and Dying --- p.31 / Chapter 2.7 --- Western Religions in Hong Kong --- p.38 / Chapter 2.8 --- Local Folk Beliefs on Death and Dying --- p.41 / Chapter 2.9 --- Psychology of Death and Dying --- p.42 / Chapter Part C: --- Measuring the Quality of Life of Terminally I11 Patients / Chapter 2.10 --- Quality of Life of End Stage Cancer Patients of the West --- p.48 / Chapter 2.11 --- Factors Affecting Quality of Life of Terminally I11 Patients --- p.51 / Chapter 2.12 --- Existing Measures on Quality of Life and Pain --- p.55 / Chapter 2.13 --- Summary --- p.61 / Chapter CHAPTER III --- TOWARDS CONSTRUCTING A CHINESE QUALITY OF LIFE QUESTIONNAIRE FOR THE THE TERMINALLY ILL PATIENTS --- p.64-107 / Chapter 3.1 --- Introduction: The Need for a Chinese Quality of Life Questionnaire (CQLQ) --- p.65 / Chapter 3.2 --- Preparatory Survey I: Identification of the Needs of Patients by Medical and Health Professionals --- p.67 / Chapter 3.3 --- Preparatory Survey II: Identification of the Needs of Patients by Severely I11 Patients --- p.75 / Chapter 3.4 --- Design of the Chinese Quality of Life Questionnaire (CQLQ) --- p.84 / Chapter 3.5 --- Preparatory Survey III: First Validation of the Chinese Quality of Life Questionnaire --- p.87 / Chapter 3.6 --- Preparatory Survey IV: Second Validation of the Chinese Quality of Life Questionnaire --- p.104 / Chapter 3.7 --- Summary --- p.107 / Chapter CHAPTER IV --- THE DEVELOPMENT OF A CHINESE PAIN QUESTIONNAIRE FROM THE McGILL PAIN QUESTIONNAIRE --- p.108-128 / Chapter 4.1 --- Introduction --- p.109 / Chapter 4.2 --- Preparatory Survey I: Collection of Cantonese Pain Descriptors --- p.110 / Chapter 4.3 --- Preparatory Survey II: Pilot Test of the Preliminary Pain Descriptors --- p.112 / Chapter 4.4 --- Modification of the Cantonese Pain Questionnaire --- p.115 / Chapter 4.5 --- Preparatory Survey III: Pilot Test of the Modified Pain Descriptors --- p.122 / Chapter 4.6 --- Preparatory Survey The Development of A Scoring System --- p.122 / Chapter 4.7 --- Preparatory Survey V: Pilot Test of the Final Draft of the Chinese Pain Questionnaire (CPQ) --- p.126 / Chapter 4.8 --- Summary --- p.128 / Chapter CHAPTER V --- EXPLORING THE VALIDITY OF TWO NEWLY DEVELOPED QUESTIONNAIRES: CQLQ AND CPQ - A FEASIBILITY STUDY --- p.129-161 / Chapter 5.1 --- Introduction --- p.130 / Chapter 5.2 --- The Study Design and Methodology --- p.130 / Chapter 5.3 --- "The Demographic, Social, Economic, and Illness Status of Subjects" --- p.145 / Chapter 5.4 --- Summary --- p.161 / Chapter CHAPTER VI --- THE VALIDATION FINDINGS --- p.162-241 / Chapter 6.1 --- Introduction --- p.163 / Part A / Chapter 6.2 --- Reporting on the Concurrent Validity in a Patient Sample --- p.163 / Chapter 6.3 --- Reporting on the CQLQ Validation Findings --- p.177 / Chapter 6.4 --- Reporting on the CQLQ Reliability --- p.211 / Chapter 6.5 --- Age and Quality of Life --- p.214 / Part B / Chapter 6.6 --- Reporting on the Validation of the CPQ Findings --- p.223 / Chapter 6.7 --- Summary of CPQ Findings --- p.241 / Chapter CHAPTER VII --- "STRUCTURAL, PAIN-ILLNESS, AND PSYCHOLOGICAL DETERMINANTS OF OVERALL QUALITY OF LIFE" --- p.242-286 / Chapter 7.1 --- Introduction --- p.243 / Chapter 7.2 --- Structural Model of Quality of Life --- p.243 / Chapter 7.3 --- Pain-Illness Model of Quality of Life --- p.264 / Chapter 7.4 --- Psychological Model of Quality of Life --- p.282 / Chapter 7.5 --- Summary --- p.286 / Chapter CHAPTER VIII --- CONCLUSION AND FUTURE DIRECTIONS / Chapter 8.1 --- Introduction --- p.288 / Chapter 8.2 --- The Chinese Quality of Life Questionnaire --- p.288 / Chapter 8.3 --- The Validity of the Chinese Quality of Life Questionnaire --- p.291 / Chapter 8.4 --- The Chinese Pain Questionnaire --- p.300 / Chapter 8.5 --- Liimitations and Implications --- p.304 / REFERENCES --- p.306-314 / APPENDICES --- p.315-408

INTRODUÇÃO: O processo de morte e morrer é mais do que um evento biológico; tem uma dimensão social, filosófica, antropológica, espiritual, religiosa, psicológica e pedagógica. A possibilidade de morte desperta sentimentos diversos, como incertezas, ansiedade, medos e angústias. Câncer e morte são termos comumente associados, mas ainda evitados na nossa sociedade e tratados com dificuldade pelas equipes de saúde. OBJETIVO: Identificar e analisar os modos de compreensão e manejo do processo de morte e morrer de pessoas com câncer por parte dos profissionais em diferentes contextos assistenciais de saúde onde atuam. MÉTODO: Trata-se de um estudo exploratório, com abordagem qualitativa, aprovado pelo Comitê de Ética em Pesquisa com Seres Humanos (CAAE:51275915.7.0000.5393, nº do Parecer: 1.402.355). Foi realizada uma pesquisa documental para a caracterização dos contextos de saúde e foram entrevistados 9 profissionais que trabalham em diferentes contextos de saúde localizados num município do interior do Estado de São Paulo - três profissionais de uma Unidade Básica de Saúde, três de um hospital público de média complexidade e três de um hospital público de elevada complexidade (que atuam em Unidade de Terapia intensiva e Enfermaria de Oncologia). RESULTADOS E DISCUSSÃO: Os dados coletados compuseram três categorias de análise: 1) a empatia e alteridade 2) conflitos éticos 3) dificuldade e estratégias de enfrentamento. A análise dos dados indicou que há diferenças nas vivências e formas de enfrentamento dos profissionais que atuam em equipamentos de saúde nos diferentes níveis de complexidade de atenção. Porém, há também aspectos em comum, como a percepção de que é muito difícil lidar com a demanda de pacientes oncológicos perto da morte, principalmente se forem crianças e jovens, de que falta capacitação e formação continuada para lidar com pacientes em cuidado paliativo, principalmente na atenção primária e nos cuidados de final de vida, e que é necessária a criação de espaços e/ou grupos de apoio para que os trabalhadores de saúde possam cuidar de si mesmos. CONSIDERAÇÕES FINAIS: Conclui-se que há necessidade de novas investigações acerca dessa temática e de um real investimento, tanto institucional como de criação de políticas educativas e de saúde do trabalhador, para melhor acolher e capacitar os profissionais que cuidam de pessoas com câncer em cuidados paliativos / INTRODUCTION: The process of death and dying is more than a biological event; has a social dimension, philosophical, anthropological, spiritual, religious, psychological and pedagogical. The possibility of death awakens feelings, as uncertainty, anxiety, fears and anxieties. Cancer and death are terms commonly associated with, but still avoided in our society and treated with difficulty by health teams. Objective: to identify and analyse the ways of understanding and management of the process of death and dying of people with cancer by professionals in different contexts where health assistance Act. METHOD: An exploratory study with a qualitative approach, approved by the Committee of ethics in research with Human Beings (CAAE: 51275915.7.0000.5393, paragraph of the opinion: 1,402,355). A documentary search for the characterization of the contexts of health and 9 were interviewed professionals working in different health contexts located in a municipality in the State of São Paulo-three professionals of a basic health Unit, medium complexity hospital january 3 and january 3 high complexity public hospital (who work in intensive care and Oncology Ward). RESULTS AND DISCUSSION: the collected data composed three categories of analysis: 1) empathy and otherness 2) ethical conflicts 3) difficulty and coping strategies. The analysis of the data indicated that there are differences in experiences and ways of coping of professionals working in health equipment in different levels of complexity. However, there are also commonalities, such as the perception that it is very difficult to cope with the demand of cancer patients close to death, especially if they are children and young people, who lack training and continuing education to deal with patients in palliative care, particularly in primary health care and end-of-life care, and the need for the creation of spaces and/or support groups so that health workers can take care of themselves. FINAL CONSIDERATIONS: It is concluded that there is a need for further research on this subject and a real investment, both institutional education policies and creation of workers \' health, to better accommodate and empower the professionals who care for people with cancer in palliative care

The number of elderly in the U.S. (i.e., individuals age 65 years or older) is growing at a rapid rate. While the current proportion of elderly persons living in U.S. is estimated to be little over 14%, it will soon reach up to 20% in next 10 years. In addition, it is anticipated that the elderly population will soon outnumber the younger generations, for the first time in U.S. history. With the rapid shift we are witnessing in the U.S. population, the World Health Organization (WHO) informs that the leading cause of death in U.S. has also shifted: from infections to chronic illnesses. The majority of elderly individuals will suffer from at least one chronic illness, and many will live longer than ever, with complex multiple healthcare needs. The demands for specialized end of life (EoL) care among frail elderly will continue to rise, and it is among the top research priorities to identify best practices in EoL care and understand how best to facilitate patient-centered care in healthcare settings. In order to increase awareness in the importance of quality care provided to those who are near EoL, the Institute of Medicine (IOM; now the National Academy of Medicine) recommended a nation-wide implementation of an advance care planning tool, the POLST (Physician Orders for Life-Sustaining Treatment). Designed specifically for frail individuals living with serious illnesses, the POLST program is used to elicit care preferences and deliver goal-concordant care. Making patients’ specific care wishes actionable and transferrable, it aims to preserve one’s autonomy, and to allow them to die with dignity. This dissertation aims to evaluate the POLST program, from its effectiveness, dissemination, to outcomes associated with its maturity status. The first chapter provides background information on the aging population the importance of advance care planning among frail elderly persons. The POLST program is introduced and I lay out the three research aims and the significance of each topic. Chapter 2 contains a systematic review of scientific evidence on the concordance between documented care wishes and actual care delivered to the POLST users. It explains specific care interventions that yielded high concordant care, as well as ones that had mixed results. In chapter 3, an environmental scan of a state-specific POLST program across all U.S. states and Washington D.C. is presented; the scan examined maturity status, specific care options mentioned/ absent as well as descriptive statistics on the association between presence of infection/pain-related care options and the POLST program maturity status. In chapter 4, a quantitative analysis aimed at examining the impacts of the POLST program maturity status on a patient-level outcome (i.e., nursing home death) is presented. In it, multiple large datasets were used to generate a representative sample of the U.S. nursing home population. I then applied multivariate logistic regression modeling to estimate associations. Lastly, chapter 5 synthesizes the findings of this dissertation as well as strengths and limitations. It then shares recommendations for policy, clinical practice and future research.

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Att befinna sig i ett terminalt skede i livet kan innebära en känsla av oro och ångest inför sjukdomen och döden. Möjligheten att då få tillbringa sin sista tid i hemmiljö med nära och kära kring sig genererar för många en trygghet. Syftet med denna uppsats är att belysa vuxna människors erfarenheter av att i livets slutskede vårdas av anhöriga i hemmiljö. Metoden som använts är systematisk litteraturstudie där aktuell forskning inom området sammanställts. Databaser som använts för sökningen var PsycINFO, Medline, Cinahl, Elin@kalmar och SweMed+. Artiklar som syftade till problemformuleringen kvalitetsgranskades och resultatet bygger på tio vetenskapliga artiklar. Resultatet visade att sociala relationer och stöd från familjen genererar livskvalitet och trygghet hos människan som vårdas i livets slutskede. Delaktighet i sin vård och känsla av att inte förlora kontrollen över sina symtom gjorde att människan kände hopp och att de klarade av situationen. Slutsatserna var att möjligheten att få bo kvar hemma ansågs mycket betydelsefullt. Sociala relationer bidrog till att människor hemma kände en lägre grad av symtom. Den sjuke uppskattade stödet från familjen men ville inte bli en börda för anhöriga. Information om stöd och en realistisk planering samt insikt i situationens allvar bidrog till att hon kände delaktighet och bättre kunde hantera situationen.

Thesis (D. Min.)--Western Seminary, Portland, OR, 2007. / Abstract. Typescript. Date on approval sheet, March 17 and 18, 2008; date on title page, November 13, 2007. Description based on print version record. Includes bibliographical references (leaves 195-198).