The hospice care population with cancer are often older adults who report many cancer-related symptoms experienced often in clusters. Most prevalent of these symptoms is fatigue and often it co-occurs with depressive symptoms and poor physical functioning. This dissertation examined fatigue, symptom clusters, depression, physical activity, and functional status in older adults with cancer. The aims of the literature review were to understand the relationship among physical functioning, cancer fatigue, fatigue-related symptom clusters, and their relationship with functional status In older adults. The literature related to these associations is insufficient and inconclusive. The methods section aimed to investigate the reliability and validity of the Center for Epidemiology Studies-Depression scale, Boston Short Form (CESD-10). Using Structural Equation Modeling (SEM) for confirmatory factor analysis, the factor structure of responses in a cross-sectional sample (N = 200) of adults with different types and stages of cancer was examined. Internal consistency reliability estimate Cronbach’s alpha =0.737. The CESD-10 four-factor model (positive affect, depressive affect, somatic complaints, and interpersonal challenges) fits the data well. The CESD-10 was a valid and reliable measure for assessing depressive symptoms in this study. The final section examined fatigue related symptom clusters and their relationships with functional status in older adult hospice patients with cancer (N=519). The fatigue-related symptom cluster (lack of energy, feeling drowsy and lack of appetite), significantly predicted poor functional status. Experiencing physical and psychological symptoms has a significant impact on functional dependence. Hospice healthcare professionals should be alert to older adults’ symptom cluster experience during assessment and management.

Thesis (Ph. D.)--Ohio State University, 1982. / Includes vita. Includes bibliographical references (leaves 124-126). Available online via OhioLINK's ETD Center.

Vård i livets slutskede är något som påverkar sjuksköterskor och vårdpersonal på olika sätt, exempelvis emotionellt. Vård i livets slutskede, även kallad palliativ vård, syftar till att lindra lidande för patienter i deras sista tid i livet. Litteraturstudiens syfte var att belysa upplevelserna av att vårda dessa patienter. Resultatet visade att upplevelserna påverkades av kulturen och de egna erfarenheterna. De teman som framkom var - omvårdnad av patienten, mötet med närstående, samarbete i teamet och existentiella upplevelser. Svårigheter med att vårda patienter i livets slutskede kunde exempelvis bero på bristande kommunikation och otillräcklig erfarenhet. Dock ansåg flertalet att arbetet var givande och utvecklande för dom och de hade en positiv inställning till palliativ vård och döden, vilket ofta kom med erfarenhet. Forskning samt fördjupad kunskap inom ämnet är därför viktigt för en ökad förståelse för att förbättra den palliativa vården för patienten samt sjuksköterskans arbetsmiljö. Även en förbättring i kommunikationen i teamet för palliativ vård behövs för att optimera arbetet med patienter i livets slutskede samtidigt som det främjar en förbättrad arbetsmiljö för sjuksköterskor och vårdpersonal. / End-of-life care affects nurses and health professionals in different ways. End-of-life care, so called palliative care, aims to facilitate for patients in their remaining days of life. The purpose of this study was to illustrate the experience of caring these patients. The study was conducted as a literature review, based on 15 articles. The results showed that the experiences were affected both by culture and what themselves have gone through. Four themes emerged; Caring for the patients, meeting with relatives, co-operation of the team and existential experiences. Difficulties in end-of-life care could for exemple be due to lack of communication and lack of experience. However, the study also showed that the majority percieved their work as rewarding and fulfilling and they had a positive approach to palliativ care and dying which often came with experience. Further research and deepend knowledge in the area are important for a better understanding and to improve palliative care for patients and the working environment for healthcare workers. Also an improvement in communication in palliativ care is needed to optimize the work with patiens in the final stages of life and at the same time a better work environment for nurses and other healt professionals.

Bakgrund: Det kan vara svårt för föräldrar till barn som vårdas i livets slutskede att inse att deras barn är döende. Många existentiella frågor och tankar uppstår hos föräldrarna. Trots att omfattningen av insatserna för vård i livets slutskede ökar finns det lite forskat inom området. Det kan resultera i att föräldrarnas önskemål och behov inte blir uppmärksammade. Syfte: Syftet med litteraturstudien var att belysa föräldrars upplevelser av att ha ett barn som vårdas i livets slutskede. Metod: En allmän litteraturstudie genomfördes. Utifrån studier publicerade i vetenskapliga artiklar sammanställdes fynd som svarade på syftet och bildade kategorier. Resultatet diskuterades utifrån Aaron Antonovskys KASAM. Resultat: Resultatet presenteras utifrån fyra kategorier; Föräldrars upplevelse av information och kommunikation, Föräldrars upplevelser av att vara delaktiga i omvårdnaden, Föräldrars upplevelser av relationen till vårdpersonalen och föräldrars emotionella och spirituella upplevelser. Resultatet svarar för föräldrarnas upplevelser av att ha ett barn som vårdas i livets slutskede. Diskussion: KASAM är individuellt och föräldrars nivå av KASAM kan påverka deras förmåga att hantera att deras barn vårdas i livet slutskede. KASAM kan inte påverkas över en natt utan förändring sker under längre tid. Sjuksköterskans uppgift blir att individanpassa hjälpen efter föräldrarnas förmåga för begriplighet, hanterbarhet och meningsfullhet. / Background: It can be hard for parents with a child in end-of-life care to comprehend that their child´s dying. Many existential questions arise from the parents. Despite increased efforts to improve end-of-life care for children, research into this is sparse. That results in that the needs and wishes of the parents are overlooked. Aim: The aim of the study was to illuminate parents’ experiences of having a child in end-of-life care. Method: A literature review was conducted. Based on studies published in scientific articles findings that responded to the purpose were compiled. This created the result’s four categories. They are discussed in relation to Aaron Antonovsky’s theory of SOC. Results: The results are presented as they relate to parent’s experiences from information and communication, being part of the care of the child, the relationship with staff and parents emotional and spiritual experience. The categories account for parent´s experiences from having a child cared for at the end-of-life. Discussion: SOC is individual and parents' level of SOC affects their ability to manage their children's palliative care. SOC can´t be altered overnight, change occurs over time. The nurse´s assignation is to individualize the help for the parents' capacity for comprehensibility, manageability and meaningfulness.

<p><strong>BACKGROUND</strong>: Several people die every year. The numbers of deceased in Sweden were 91449 in 2008. This often brings bereavement for the relatives and in hospital with end-of-life care it can be important for the health professionals to support and also take care of the relatives. <strong>AIM</strong>: The aim of this study is to illuminate relatives’ experiences of the caring situation with end-of life-care when a close relative is dying <strong>METHOD</strong>: Literature review. A number of thirteen scientific articles were analyzed. These were previous research of both qualitative and quantitative methods. <strong>RESULT</strong>: The result shows that many relatives are in need of a good treatment from health professionals, where the treatment includes components like providing support, providing information, creating a good relationship and having a good communication. A trust in health professionals was important for the relatives because it brought knowledge that good care was provided to the patient. It also indicates that participation was important in end-of-life care. There was a safety in having someone at the relative´s side who could offer aid. A quiet and calm environment was positive. <strong>DISCUSSION</strong>: The nurse´s experience and knowledge about bereavement is an important part of the care providing to the relatives.</p> / <p><strong>BAKGRUND</strong>: Varje år dör många människor och i Sverige dog 91 449 människor år 2008. Detta medför sorg för många närstående och medför även att vårdpersonalen har en stor del i att ge stöd och ta hand om de närstående samtidigt som de tar hand om vårdtagaren. <strong>SYFTE</strong>: Syftet är att belysa närståendes upplevelser av omvårdnadssituationen kring vården vid livets slut av en nära anhörig. <strong>METOD</strong>: Litteraturstudie. Tretton vetenskapliga artiklar analyserades. Dessa var tidigare forskning av både kvalitativa och kvantitativa studier. <strong>RESULTAT</strong>: Resultatet visar att många närstående är i behov av ett gott bemötande från vårdpersonal, där det med bemötande ingår komponenter som att ge stöd, att ge information, att skapa en god relation och att ha en god kommunikation. Ett förtroende för vårdpersonalen var viktigt för att närstående skulle veta att en god omvårdnad gavs till vårdtagaren. Det visar även på att delaktighet var betydelsefullt i vården vid livets slut. Det var en trygghet att ha någon vid sin sida som kunde erbjuda stöd. En lugn och behaglig miljö med hemtrevlig inredning var positivt. <strong>DISKUSSION</strong>: Sjuksköterskans erfarenhet och kunskap om sorg har en betydelse i hur närstående tas om hand.</p>

Thesis (M.A.)--Trinity International University, 2000. / Abstract. Includes bibliographical references (leaves 123-128).

Thesis (M. Arch.)--University of Hong Kong, 2001. / Includes special study report entitled: 'Pattern language' of elderly indoors living. Includes bibliographical references.

Hope is considered to have a positive influence upon health. Cancer patients may enter hospice care after a rigorous course of medical treatment, having hoped for a cure or long remission. While the hope for cure is important, hope is no less important at the end of life when the goal of care is quality of life. This study examined the relationship between hope and quality of life in hospice patients with cancer. Thirty-one patients with cancer, who were alert, oriented, living with a caregiver, and aware of their diagnosis were sampled from a hospice program. The instruments used were the Herth Hope Index (HHI) and the Hospice Quality of Life Index (HQLI). The HHI total scores and the HQLI total scores were significantly positively correlated (r = .356; p = .049). This finding suggests that hope is a different concept than quality of life but that these concepts are related. A high level of hope (mean of 42.84 out of a possible 48) was maintained by subjects. The HQLI subscale of social/spiritual well-being and the total HHI scores were also positively correlated (r = .51; p = .003) suggesting that hope can be influenced by this aspect of quality of life which includes a relationship with God, support from family, friends and healthcare providers, and spiritual support from the healthcare team. The findings of this study underscore the importance of the healthcare provider in promoting hope at the end of life, and suggests that hope is not taken away by admission into a hospice program.

Family caregivers encounter immense negative consequences including decreased quality of life and increased rates of morbidity and mortality that stem from physical burdens, emotional distress, depression, social isolation, and loss of financial security. Although communication is an important aspect of caregiving, communication tasks are reportedly difficult for end-of-life family caregivers. The goal of this study was to explore the variety of communication stressors experienced by end-of-life family caregivers to gain insight into the communication tasks caregivers perceive as most difficult and the reasons why. Qualitative data was achieved through in-depth, face-to-face interviews with 40 caregivers currently providing care for a family member diagnosed with Alzheimer’s disease and related dementias (n=20; ADRD) and Glioblastoma (n=20; brain tumor [GBM]). A grounded theory approach was employed to gain insight into end-of-life family caregiver communication experiences. The results revealed that communication is perceived as a burden for end-of-life family caregivers. Not only does communication burden exist, end-of-life family caregivers experience immense tension and stress regarding a variety of relational contexts when communicating with the care recipient, others (family, friends), and clinicians. The results further revealed that communication burden stems from the caregiver’s attempt to negotiate between two opposing extremes: a desire to protect the patient and others versus a need to protect oneself. Thus, internal tension occurs when end-of-life family caregivers contemplate whether and how to engage in difficult conversations, and then again when following through. The presence of these contradictory tensions induced the emergence of barriers and therefore communication burden within various aspects of the end-of-life caregiver experience. Added insight into communication burden was achieved through a supplementary scale development study in a sample of ADRD and oncology end-of-life caregivers (N=263), which revealed communication burden as significantly associated with caregiver burden and quality of life. Implications for the advancement of interpersonal and health communication theory as well as practical tailored interventions targeting end-of-life family caregivers are discussed.

Sammanfattning/Abstract Bakgrund: Många patienter väljer i dag att vårdas hemma under sin sista tid i livet istället för som tidigare på sjukhus eller ett boende. Den palliativa hemsjukvården blir därför alltmer utbredd vilket samtidigt innebär att allt större krav ställs på de närstående som då ofta intar en vårdande roll.  Syfte: Syftet är att beskriva hur närstående upplever sin vårdande roll i den palliativa hemsjukvården. Metod: En litteraturstudie baserad på tio resultatartiklar som består av både kvalitativa och kvantitativa studier där vi kom fram till tre teman som handlade om den närståendes upplevelser av den vårdande rollen, närståendes vårdande roll och den sjuke och närståendes vårdande  roll och sjuksköterskan.  Resultat: Många närstående fann både fördelar och nackdelar med den vårdande rollen och att den innebär en stor omställning. Många närstående kände sig mer eller mindre tvingade att ta över den vårdande rollen.Tillräcklig information och en god kommunikation ansågs av de närstående som en mycket viktig faktor.   Diskussion: Att vårda en svårt sjuk anhörig är ofta en belastning. Detta kräver att vårdpersonalen är medvetna om de närståendes svåra situation och upplevelsen av denna. Det är även viktigt att uppmärksamma närståendes behov av information och att ha en bra kommunikation för att vi som sjuksköterskor ska kunna stödja de närstående i deras vårdande roll. Nyckelord: Anhörig vårdare, vårdande roll, palliativ vård, döende patienter, vård i livets slut Keywords: Family caregivers, caring role, palliative care, terminally ill, end of life care