Depression is poorly recognised, under-assessed and under-treated in patients receiving palliative care for a life-limiting illness. There are barriers to assessment and diagnosis, and limited access to specialist clinicians who might assist in these complex assessments and who could provide options for treatment. The three studies presented, using different research methodologies, and using both qualitative and quantitative analysis, seek to clarify these issues and to provide some solutions. A questionnaire was sent to all Palliative Care Services (PCS) in Australia. Questions included what part specialist psychological clinicians played in multi-disciplinary team meetings and in the treatment or coordination of patient care. Very few PCS used a valid screening instrument for psychological distress and very few had regular support from a psychiatrist or psychologist. Many did not have access to social work support. There are two competing issues with regard to recognising and assessing depression in palliative populations. A rapid reliable screen that points to a likely problem would be useful, but also there is a need to understand something of the patient experience of depression. In the second study, the one- and two-item screening instruments widely used in palliative care are examined and limitations that have been found in other settings are confirmed. A new novel screening tool is developed from this data and tested empirically. This algorithm is short, has good psychometric properties and is validated for an Australian palliative care population. Depending on the response pattern it is possible to identify that a particular patient has significant symptoms of depression by asking between one and four questions. Professional carer and patient acceptability of the questions is high. The understanding of the experience and symptom profile of depression in Australian palliative care patients is addressed in the third study. Patients and family carers were recruited prospectively from palliative care and oncology ambulatory clinics of two teaching hospitals in an Australian capital city. The Geriatric Depression Scale (GDS) was administered to the patient and the Collateral Source version of this instrument was asked of the carer. A subset of this sample completed the measures twice. The results using this 30-item scale were then compared with all the known previously published short versions of this scale. Two short forms met as many psychometric criteria as the longer forms. None of the versions of the GDS showed sufficiently high correlations between carer-completed and patient-completed forms. The frequency of symptoms was also assessed. Patients more frequently reported fatigue and anhedonia than depressed affect. Despite many screening instruments being available for depression, their use is limited in Palliative Care Services. Although these studies have validated several options for Australian palliative care patients, the issues behind the low uptake rates for screening have not been resolved. The final chapter of this thesis constructs known and potential barriers into a logical structure and then offers some solutions to improve access to mental health professionals by considering service models and applying this theory to the problem of depression and its assessment in palliative care populations.

Heart failure is a cause of significant burden to both individuals and society. Individuals live with a disease where there is a decline in physical functioning, the experience of a range of symptoms including breathlessness and pain, frequent hospitalisations and death. The frequent hospital admissions that are usually precipitated by shortness of breath places an economic burden on the current health system. This burden of heart failure is expected to increase in the coming years due to factors such as the ageing population and improved survival from acute cardiac events. This current and predicted continuing burden has been recognised by the health system and has resulted in significant improvement in the pharmacotherapy and nonpharmacotherapy treatment of heart failure. Despite this improvement and with the exception of those few who receive cardiac transplantation, there is no cure for heart failure. Whist the advances in therapy have promoted significant improvements in heart failure management, symptoms including breathlessness (dyspnoea) remain a major issue. The Management of Dyspnoea in Advanced Heart Failure project explored and assessed the current therapeutic management of dyspnoea in advanced heart failure and examined two potential therapeutic options namely nebulised frusemide and long-term oxygen therapy. Following a comprehensive review of the nebulised frusemide literature, The Haemodynamic Effects of Nebulised Frusemide in Heart Failure study showed that nebulised frusemide did have an impact on the haemodynamic parameters of participants. Whilst many consider oxygen therapy as a common sense approach for breathlessness, the lack of scientific evidence for its use in chronic breathlessness with people who have normal or mildly low oxygen levels has prevented funding to supply oxygen therapy to this group of patients. The O2 Breathe Study is a palliative care study that is testing long-term home oxygen therapy versus medical air in patients who do meet the current funding arrangements. The analysis of the screening data showed that the symptom burden as a result of dyspnoea is similar to that seen in cancer and respiratory patients, and heart failure patients had lower levels of physical functioning than the respiratory group. Whilst the design of the studies in this thesis will not allow conclusions to be made regarding their efficacy for dyspnoea management in heart failure, they have provided preliminary data and hypotheses to be tested in the future. / Doctor of Philosophy (PhD)

<p><em>Bakgrund</em>: När en familjemedlem blir svårt sjuk har det en stor påverkan på hela familjen. Närstående har och känner ofta ångest, depression och maktlöshet. Familjemedlemmens sjukdom kan också leda till att rollerna i familjen ändras, och en förändring i den ekonomiska situvationen och en ökad påfrestning för familjen. <em>Syfte</em>: Syftet med studien var att belysa behov som närstående till patienter inom palliativ vård kan ha. <em>Metod</em>: En litteraturstudie genomfördes med sökningar i Pubmed och Cinahl. Innehållsanalys gjordes av de 11 inkluderade artiklarnas huvudresultat. Tydliga framträdande fenomen i texten kondenserades, kodades och katogoriserades i underkategorier och kategorier. <em>Resultat</em>: I studiens resultat framkom att närstående till patienter inom palliativ vård har ett stort behov av kommunikation, information och stöd. <em>Diskussion</em>: Att ha en fungerande kommunikation fanns var något som var viktigt för de närstående, då det gav dem en känsla av trygghet. Det var även viktigt att rätt infomation gavs till de närstående, att den gavs vid rätt tillfällen och att de närstående kunde förstå informationen.För att stödja närstående spelar vårdpersonal en viktig roll, då de kan bidra med uppmuntran och hopp i en svår situation.</p>

<p><strong>BAKGRUND: </strong>En konfrontation och möte med döden sker för de flesta genom ens egen eller en närståendes svåra sjukdom. Att vara anhörig till en svårt sjuk person är inte en enkel roll och för många anhöriga kan detta vara en ny och skrämmande situation. Samtidigt som den anhörige förväntas finnas där och stödja den sjuke, bär denne också på en egen sorg. <strong>SYFTE: </strong>Att belysa närståendes upplevelser vid vård i livets slutskede av en anhörig i hemmet. <strong>METOD: </strong>Litteraturstudie med 15 artiklar inkluderade, materialet analyserades med innehållsanalys. <strong>RESULTAT: </strong>Analysen mynnade ut i fem kategorier samt 21 subkategorier. Resultatet visade på att anhöriga upplevde en rad negativa känslor i samband med vårdandet av en svårt sjuk eller döende anhörig, men också positiva känslor som till exempel tillfredställelsen av att veta att ha gjort allt för den sjuke. Stöd var en viktig komponent i vårdandet av en anhörig, stödet kunde både komma från vårdpersonal, familj och vänner. <strong>DISKUSSION/SLUTSATS: </strong>Att se även den anhörige i vårdandet av en svårt sjuk i hemmet, borde vara av stor vikt för sjukvårdspersonal för att kunna lindra både den sjukes och dess anhörige lidande.</p>

<p><strong>Bakgrund: </strong>Vårdpersonalen har en viktig funktion i omvårdnaden av närstående till palliativt sjuka patienter. Den palliativa vårdsituationen var ofta en ny upplevelse för de närstående. Vårdpersonalens uppgift var därmed att ge aktuell information samt se till att närstående blev delaktiga i vården.<strong> Syftet: </strong>Med litteraturstudien var att<strong> </strong>belysa vårdpersonalens stöd till närstående samt beskriva vilka behov närstående hade i palliativ vård. <strong>Metod: </strong>Femton vetenskapliga artiklar med kvalitativ metod analyserades enligt innehållsanalys och låg till grund för litteraturstudien. <strong>Resultat: </strong>Det<strong> </strong>framkom att vårdpersonal och närstående ansåg att de viktigaste funktionerna var att<strong> </strong>ge och få stöd. Närstående önskade information och kunskap om den svårt sjukes tillstånd samt sjukdomsförlopp. Slutligen visade resultatet att det var viktigt när personalen tog sig tid att lyssna och tala med de närstående samt att alla parter var delaktiga i de beslut som togs. <strong>Diskussion: </strong>Genom stöd från vårdpersonalen blev den svåra situationen för de närstående hanterbar. Den viktiga informationen ledde till begriplighet över den nya situationen, där delaktigheten i vården av den svårt sjuke skapade en meningsfullhet för de närstående. <strong>Konklusion: </strong>Vårdpersonal borde få mer kunskap och träning i att ge information och omvårdnad till närstående för att kunna tillgodose deras behov.</p><p> </p>

<p>One third of all Swedish people will suffer in cancer. Pain is a common symptom in cancer patients. The pain is subjective and includes several dimensions. The dimensions of pain are the physical, psychological, social and spiritual. This is a literature review and the aim with this study was to identify the pain experience in patients with cancer receiving palliative care. Nineteen articles were analysed. The result shows that the physical pain was experienced as chronicle or episodic pain.</p><p>Psychological pain included fear, distress and anxiety. Social pain was a result of loss of relationships and ability to take part of activities. Spiritual pain was expressed as feelings of meaningless, hopelessness and fear for the future. Different kinds of dimensions cooperate with each other. They can strengthen each other and one dimension of pain can lead to another. The articles that have been analysed focus on several dimension of pain. To be able to relieve the pain and other symptoms, the nurse needs to have a holistic view of patients and to be aware of how all dimensions of pain that is expressed by the patient.</p>

<p>The aim of the present literature review was to describe and evaluate the effects and experiences within the complementary approaches such as aromatherapy, tactile massage and acupuncture amongst palliative care patients. Search through Medline (through Pub Med) database and additional manual search was conducted. In total 16 articles fulfilled the inclusion criteria and were reviewed. The result was presented under respectively category: aromatherapy, tactile massage and acupuncture. Physical and psychological effects as well as experiences from the treatments were also documented under the different complementary approaches. Aromatherapy and tactile massage were found to be more effective for reduction in anxiety and depressive mood whilst acupuncture had a greater impact on physical symptoms such as fatigue/insomnia, nausea/vomiting and chemotherapy induced emesis and also xerostomia. Not only did the patients experience relaxation and peacefulness but also feelings of comfort from the aromatherapy and tactile massage therapies. The result also showed that acupuncture felt invigorating and generated more energy for the patients to cope with more activities in their daily lives. In conclusion the complementary therapies aromatherapy, tactile massage and acupuncture are effective and alleviating and therefore very beneficial for patients in palliative care. The complementary therapies is a perfect and valuable tool for symptom management and strengthens the caregiver/patient relationship.</p>

<p><em><p>Syftet med denna litteraturstudie var att beskriva vilken utbildning, kunskap och attityd sjuksköterskor har inom munvård samt hur sjuksköterskor kan främja god munvård hos patienter i palliativ vård. En beskrivande litteraturstudie användes som <em>metod där artiklar söktes i Cinahl och Pubmed (Medline). Där hittades tolv artiklar som sedan formade denna studie. <em>Resultatet visade att många sjuksköterskor ansåg att de hade fått bristfällig utbildning i munvård under sin grundutbildning. Eftersom kunskapsnivån hos många sjuksköteskor var otillfredsställande har det framkommit att både personal och patienter inom den palliativa vården gynnas genom utbildning. Det fanns många negativa attityder kring munvård bland sjuksköterskor. Munvård prioriterades inte heller tillräckligt inom den palliativa vården enligt sjuksköterskor. Däremot ansåg de att det bör prioriteras bättre. Olika program och framtagna arbetsredskap har visat sig kunna underlätta arbetet för sjuksköterskor. Även patientutbildning har bidragit till att skapa en bättre munstatus. <em>Slutsatsen av studien är att det finns brister i utbildning, kunskap och attityder inom munvård bland sjuksköteskor. För att ändra på detta vill sjuksköterskor ha mer utbildning och träning. På så vis kan bättre förutsättningar skapas för sjuksköterskan att främja god munvård för patienter i den palliativa vården. </em></em></em></p></em></p> / <p>The <em>purpose of this literature study was to describe education, knowledge and attitudes among nurses regarding oral health care and in which way nurses can promote proper mouth care among patients within palliative care. A descriptive design was the <em>method chosen, with articles obtained via Cinahl and Pubmed (Medline). Twelve articles were found that subsequently formed this study. The <em>results showed that many nurses considered having recieved insufficient mouth care training during their education. Since the level of knowledge among many nurses was lacking it has been shown that both staff and patients within palliative care benefit from education. There were many negative attitudes about mouth care among nurses. Moreover, it was not prioritized enough within palliative care according to nurses. However, they felt that it should be. Different programs and developed tools have shown to facilitate nurses' work. Patient education has also contributed to a better mouth status. The <em>conclusion of the study is that there are flaws in education, knowledge and attitudes about mouth care among nurses. To change this nurses want more education and training. Thus better condition can be created for nurses to promote proper mouth care for patients within palliative care. </em></em></em></em></p>

Objective: A significant number of children suffer from life-limiting illnesses, with many dying each year in the U.S. Services, beyond standard medical care, aimed at increasing overall quality of life for children with life-limiting illnesses, are greatly needed within and outside of our hospitals. Palliative care is conceptualized as treatment provided to relieve symptoms and improve quality of life. Despite the empirically supported benefits of providing pediatric palliative care, only a small percentage of pediatric patients actually receive these services. Thus, there is a great need for the development and provision of these services. The first aim of the current study was to compare results from Holtz Children’s Hospital (HCH) at the University of Miami with those from Lucile Packard Children's Hospital (LPCH) at Stanford University, where a survey assessing pediatric healthcare providers’ palliative care needs was originally developed. The second aim was the modification and further development of the measure, including an evaluation its psychometric properties. The third aim was to identify the educational and training needs of healthcare providers in providing pediatric palliative care. The fourth aim was to evaluate whether completing the survey improved awareness of a palliative care team. Method: Two hundred and twenty five healthcare providers at HCH completed the Survey on Pediatric Palliative Care for Healthcare Providers (SPPCHP). Participants were diverse with regards to ethnicity/race and profession. Results: Healthcare providers at both hospitals reported feeling inexperienced in similar aspects of delivering palliative care and desired further training and support. The SPPCHP demonstrated strong internal consistency and good construct validity, evidenced in factor analyses. Pediatric healthcare providers at HCH reported only feeling “somewhat” experienced in all aspects of pediatric palliative care and rated families’ inability to accept terminal diagnosis as the top barrier to providing this care; half of healthcare providers reported not receiving adequate support. Although referrals did not increase six months after study completion, awareness at the hospital was improved. Conclusions: Clinical implications include the need for systematic training and support in palliative care for a range of pediatric professionals, with an emphasis on addressing key barriers to care. Given the similarity of the findings at HCH and LPCH, these results appear generalizable to a variety of children’s hospitals.

One third of all Swedish people will suffer in cancer. Pain is a common symptom in cancer patients. The pain is subjective and includes several dimensions. The dimensions of pain are the physical, psychological, social and spiritual. This is a literature review and the aim with this study was to identify the pain experience in patients with cancer receiving palliative care. Nineteen articles were analysed. The result shows that the physical pain was experienced as chronicle or episodic pain. Psychological pain included fear, distress and anxiety. Social pain was a result of loss of relationships and ability to take part of activities. Spiritual pain was expressed as feelings of meaningless, hopelessness and fear for the future. Different kinds of dimensions cooperate with each other. They can strengthen each other and one dimension of pain can lead to another. The articles that have been analysed focus on several dimension of pain. To be able to relieve the pain and other symptoms, the nurse needs to have a holistic view of patients and to be aware of how all dimensions of pain that is expressed by the patient.