Background: Despite the increased presence of clinical psychologists in paediatric services, including palliative care teams, there has been little research into their experience of working with children with life-limiting conditions. Existing studies have tended to focus mainly on the experience of medical professionals working in this area. Such studies have found that working with life-limiting conditions and child death has a significant impact on medical professionals, causing stress, burnout and feelings of professional failure. As clinical psychologists have a role in supporting the emotional needs of children, families and staff teams, it is important to explore their experiences, the impact that such work has on them, and any potential personal and professional implications. Aims: After identifying the above gap in the research, this study aimed to explore clinical psychologists‟ experiences of working with children with life-limiting conditions. Method: Semi-structured interviews were conducted with seven qualified clinical psychologists who were working in hospital settings with children with life-limiting conditions. The transcripts of the interviews were then analysed using Interpretative Phenomenological Analysis (IPA). Results: Three superordinate themes emerged from the analysis: „The meeting of two worlds: When psychology and medicine converge‟, „Nobody is immune: Facing the challenges of working of life-limiting conditions‟ and „Balancing the rough with the smooth: Finding a way to manage‟. Implications & conclusion: Participants experienced challenges in having to adapt to a medical world and in facing emotional impacts however, they also reported positive experiences from their work. The study raised many implications for clinical practice including the need to potentially help psychologists to prepare for the possible changes required when practicing in a hospital setting. This could perhaps be incorporated more into clinical training or be provided as in-house training when starting in the post.

As a GWR research project joint funded by Hospiscare, the main objective of this research was to examine the nature of psychological distress in palliative care, with the specific purpose of developing and evaluating accessible psychological interventions suitable for Hospiscare staff to use with clients. There is evidence that palliative care patients and their caregivers experience psychological difficulties including (a) studies of depression and anxiety in palliative care; (b) the concerns expressed by palliative care patients and their caregivers. However, the studies are generally qualitative in nature based on interviews of small samples of participants. Therefore, Study 1 and Study 2 adopted a cross-sectional design to examine psychological distress and rumination in samples of palliative care patients, their caregivers and an age-matched control group. The results from Study 1 and Study 2 indicated that psychological distress and rumination on existential concerns were elevated in palliative care patients and their caregivers. Furthermore, findings suggested an association between psychological distress and abstract rumination. Study 3 reported a case series piloting an intervention developed from concreteness training (CT) designed to address abstract rumination in palliative care. The case series indicated that with some modification to the identification and screening of patients, the treatment could be acceptable and feasible for palliative care patients. Study 4 examined the effectiveness of the CT guided self-help intervention in a randomized controlled trial. Findings indicated that the intervention could be effective for reducing anxiety, but not depression in palliative care patients. Moreover, Study 5’s findings also raised the possibility that abstractness was a partial mediator of the effects of the intervention on self-reported symptoms of anxiety in palliative care patients. Study 5 utilised a cluster randomized controlled design to evaluate a training programme designed to teach hospice staff how to deliver the CT guided self-help intervention. Results indicated that there was a more positive impact of routine care on patient distress for nurses attending training, when compared to nurses not attending the training. However, the training did not impact on nurses’ self-reported confidence or behaviour in addressing patients’ distress.

Bakgrund: Av de som dött i Sverige de senaste två åren har cirka 80 procent varit i behov av palliativ vård. Genom att fokusera på patienters och närståendes upplevelser av vad som är viktigt i livets slutskede så kan en värdig död främjas. Värdighet är ett begrepp som är komplext och saknar konsensus inom vården. Det är även ett begrepp som är centralt inom vårdvetenskap. Harvey Max Chochinov har skapat en värdighetsmodell för att försöka göra begreppet värdighet mer förståligt och utifrån denna modell skapades interventionen värdighetsterapi. Syfte: Syftet med vår uppsats är att beskriva hur värdighetsterapi upplevs av patienter och anhöriga, samt belysa andra aspekter av värdighetsterapi. Metod: Den metod som används är litteraturöversikt. Efter systematisk sökning i databaser har nio artiklar studerats och dessa artiklar var både kvalitativa och kvantitativa. Artiklarna kommer ifrån Australien, Storbritannien, Japan, Danmark, Kanada och USA. Som teoretisk utgångspunkt användes de 6:Sn Chochinovs värdighetsmodell. Resultat: De huvudsakliga resultaten var att värdighetsterapi ansågs ha hjälpt patienter och anhöriga. Interventionen är genomförbar men resultaten tyder på att faktorer som kultur, tid, kostnad och patientens kognitiva tillstånd måste beaktas. Diskussion: Det som tas upp i diskussionen är de kulturella aspekterna kring värdighetsterapi, hur användbart det är inom vården och om det är samtalet eller arvsdokumentet som stärker värdighet. När det kommer till de kulturella aspekterna visade studier på att översättningar kunde bli fel och att kulturer kan se olika på vad som är en god död. Att genomföra värdighetsterapi tog längre tid än förväntat och den som utförde interventionen måste ha en viss kompetens. Detta är något som påverkar användbarheten av värdighetsterapi inom vården. / Background: Of those who died in Sweden over the last two years, about 80 percent were in need of palliative care. A dignified death can be promoted by focusing on patients and their families feeling of what's important in the end of life. Dignity is a concept that is complex and lacks consensus in health care. It is also a concept that is central to the health sciences. Harvey Max Chochinov has created a model of dignity trying to make the concept of dignity more understandable, and based on this model an intervention was created called dignity therapy. Aim: The aim of this study is to describe how Dignity therapy is used and evaluated by patients, relatives and other aspects of Dignity therapy. Methods: The method that was used was a literature review. After a systematic search in different databases nine articles were studied and these articles were both qualitative and quantitative. The articles are from Australia, UK, Japan, Denmark, Canada and the United States. As the theoretical framework the dignity model by Chochinov was used. Results: The main findings were that dignity therapy was considered to have helped patients and relatives. The intervention is feasible, but the results suggest that factors such as culture, time, cost and patient cognitive state must be considered. Discussions: Raised in the discussion are the cultural aspects of dignity therapy, how useful it is in healthcare, and if it is the conversation or the legacy document that promotes dignity. The cultural aspects showed in the studies that the translation could be wrong and that different cultures may differ on what is considered a good death. Implementing dignity therapy took longer than expected and the caregiver that performed the intervention must be skilled. This is something that affects the usability of dignity therapy in health care.

Bakgrund: Palliativ vård i livets slutskede innebär att behandlingen inte har som syfte att bota utan lindra symptom. Anhöriga utgör en betydelsefull del av den palliativa vården av patienten. Syfte: Att undersöka patienters och anhörigas upplevelser av palliativ vård i hemmet, på hospice och hospice dagvård. Metod: Metasyntes. Artiklarnas resultat lästes noggrant, analyserades och nya teman bildades baserat på skillnader och likheter mellan temana. Resultat: Fem teman och ett subtema bildades: Personalen kan förmedla empowerment. Vårdarrollen kan innebära många utmaningar. Subtema: Olika anledningar till att ta rollen som anhörigvårdare. Att förhålla sig till lidande. Värdefulla relationer. Att leva nära döden väcker existentiella frågor. Personalen kunde genom sin kunskap och sitt bemötande förmedla trygghet och empowerment till anhöriga och patienter. Anhöriga upplevde vårdarrollen som utmanande och påfrestande men erfarenheterna kunde bidra till personlig utveckling och stolthet över sin egen förmåga. Att ingå i ett socialt sammanhang var positivt för självkänslan och gav livsglädje. Anhöriga hade svårt att hantera den fysiska förändringen sjukdomen ledde till och att se patienten lida. Patienter hanterade den förestående döden på olika sätt, från att tala om och planera inför den till att inte beröra den alls. Patienter kände tacksamhet över livet och uttryckte en vilja att fortsätta leva sitt liv. Slutsats: Det existentiella lidandet för både patient och anhörig som kommer av den stundande döden går inte att komma runt. Däremot kan ytterligare börda i form av vårdlidande undvikas genom att vårdpersonalen erbjuder tillräckligt stöd, en god omvårdnad och respektfullt bemötande. / Background: Palliative care at the end of life is not aimed to cure but to relieve pain and other symptoms. The family plays an important part in the palliative care of the patient. Aim: To explore patients’ and bereaved family members’ experiences of palliative care at the end of life. Method: Meta-synthesis. Result: Five themes and one sub theme were formed. Healthcare staff can empower both patients and family. Being a family carer can be challenging. Subtheme: Different reasons to become a carer. Ways to relate to suffering. Meaningful relationships. Living close to death evokes existential matters. The healthcare staff could by their knowledge and demeanor mediate safety and empowerment to the family and the patient. Family carers experienced the care-giving role as challenging but it could contribute to personal growth and carers felt proud over their ability to have managed. To be part of a social context had a positive impact on the self-esteem and brought joy to life. It was hard for the family to handle the physical deterioration caused by the disease and to see the patient suffer. Patients dealt with their impending death in different ways, from talking about and planning it to not recognizing it. Patients felt gratitude and expressed a will to continuing living their life. Conclusion: The existential suffering that is associated with the loss of a loved one cannot be eliminated. However, additional suffering such as care suffering can be avoided if the staff provides sufficient support, adequate care and respectful treatment of the family.

Bakgrund: När livet på grund av sjukdom börjar närma sig slutet och döden är nära, kan patienten befinna sig i en situation då ett besked ges att botande behandling kommer avslutas. Den fortsatta vården kommer istället riktas mot symtomlindring och att få en värdig sista tid i livet. Övergången från vardagen till palliativ vård kan ses som en hälso- och sjukvårdsrelaterad transition som påverkar patientens livsvärld. Syfte: Att beskriva patienters upplevelse av övergången från vardagen till palliativ vård. Metod: En litteraturöversikt där induktiv design användes. Tio artiklar med kvalitativ analys inkluderades. Med hjälp av Fribergs femstegsmodell har artiklarna granskats, bearbetats och analyserats. Resultat: I resultatet framkommer att patienter i övergången från vardagen till palliativ vård upplever känslor av ovisshet och förlust. Stöd i övergången påverkar patienters upplevelser av hopp och värdighet. Resultatet visar också att introduktion till palliativ vård tidigt i sjukdomsförloppet påverkar känslan av trygghet och värdighet. Resultatet presenteras i fem teman, Ovisshet, Förlust, Hopp, Stöd samt Värdighet. Slutsats: Patienter upplever osäkerhet och ovisshet i övergången från vardagen till palliativ vård. Tidig introduktion till palliativ vård och därmed stöd från sjuksköterskan och närstående i transitionen skapar trygghet och värdighet. / Background: When life due to illness is approaching the end and death is near, often the patient is informed that curative treatment must be discontinued and that care instead focus on symptom relief and to get a worthy last time in life. The transition from everyday life to palliative care can be seen as a health-related transition that affects the patient's life-world.Purpose: To describe patients' experience of the transition from everyday life to palliative care. Method: A literature overview with inductive design has been conducted. Ten articles with qualitative analysis were included. With the help of Friberg's five-step model, the articles have been reviewed, processed and analyzed. Result: The result shows that patients in the transition from everyday life to the palliative care experience feelings of uncertainty and loss. Support in the transition affect patients' experiences of hope and dignity. The result also shows that early introduction to palliative care affects the sense of safety and dignity. The results presented in five themes, Uncertainty, Loss, Hope, Support and Dignity. Conclusion: Patients experiencing insecurity and uncertainty in the transition from everyday life to palliative care. Early introduction to palliative care with support from nurses and relatives in the transition creates security and dignity.

Background: Living with an incurable disease means facing existential challenges that the person must relate to. Being in a palliative phase also means that the person undergoes a lot of changes which often causes suffering. Suffering in palliative care is seen as multidimensional, something that affects the whole person, which is why a holistic view is a central part of palliative care. Aim: The aim of this literature study was to describe patient's experiences of existential suffering in the palliative phase. Method: A literature study based on ten qualitative articles. Results: Four main themes were found; experiences of a changed life-situation, experiences of loneliness, experiences of meaningless and experiences of loss. Conclusion: The study shows, from an existential point of view that coping and handling with an imminent death is complex and difficult in several ways. Patients in palliative care are a vulnerable patient group whose existential suffering may be enhanced by the way health professionals provide care. The study also shows a need for further research in this area aiming to support health care professionals to alleviate existential suffering.

Bakgrund: Begreppet palliativ vård definieras som ett förhållningssätt där det centrala målet är att förbättra patienters och anhörigas livskvalitet. Behovet av palliativ vård är stort då allt fler blir äldre. Sjuksköterskor kan möta patienter i palliativa skeden inom olika vårdsammanhang och upplever att kunskapen är otillräcklig. Syfte: Syftet var att beskriva patienters upplevelser av att leva med sjukdom i ett palliativt skede, samt att beskriva de valda artiklars undersökningsgrupper.  Metod: Litteraturstudie med en beskrivande design innefattande 13 artiklar med kvalitativ ansats från databaserna CINAHL och MEDLINE via PubMed.  Huvudresultat: Att leva i ett palliativt skede upplevdes av många patienter som en kamp och ett lidande. De önskade att få fortsätta leva ett så normalt liv som möjligt och bibehålla självständigheten. Att inte längre kunna ta hand om sig själv upplevdes skapa ett stort beroende av andra och resulterade i en känsla av att vara en börda för familjen. Det var meningsfullt att spendera tid med familjen samt att få stöd. Vissa patienter upplevde en acceptans av livets slut och önskade att få dö fridfullt.  Slutsatser: De upplevelser som patienterna förmedlade i det palliativa skedet kan tyda på ett stort behov av att erhålla stöd på olika sätt, samt att självständighet och familjen spelar en viktig roll i patienternas livssituation. För att patienterna ska få bevara upplevelsen av att vara självständig och få en så god omvårdnad som möjligt, bör sjuksköterskan kommunicera och stödja patienterna samt sträva efter att de får uppleva delaktighet i den egna vården. / Background: The concept of palliative care is defined as an approach where the key objective is to improve the quality of life for patients and their relatives. The need for palliative care is substantial as more people are getting older. Nurses can meet patients in palliative stages in different health care settings and experience the knowledge as inadequate.  Aim: The aim was to describe patients experience of living with disease in a palliative stage, and to describe the selected articles study groups.  Method: Litterature review with a descriptive design including 13 articles with a qualitative approach, from the databases CINAHL and MEDLINE via PubMed. Main results: To live in a palliative stage was experienced by many patients like a struggle and suffering. They wanted to live their lives as normally as possible and to maintain their independence. To no longer being able to take care of themselves perceived to create a dependence on others and resulted in a feeling of being a burden to the family. It was meaningful to spend time with family and to receive support. Some patients experienced an acceptance of life ending and wished to die peacefully. Conclusions: The experiences that patients mediated in the palliative stage may indicate a great need to be supported in different ways, and that independence and the family plays an important role in patients' lives. To ensure that patients are preserving the experience of being independent and get as good care as possible, the nurse should communicate and support patients and strive to get the experience involvement in their own care.

Background: The End of Life Care Strategy stated that there should be a reduction of expected deaths in the acute setting. In order to achieve this goal, when it has been identified that where the patient's preferred place of care is home, clinicians need to be able to recognise when a patient is dying in order to achieve their preferred place of death. The aims of this study were to identify any factors that help or hinder a clinician when they are determining when irreversible dying begins and to seek consensus on which of these topics would be useful to include in an education programme. Method: A 3 stage mixed methods study was developed. Phase 1was a Systematic Review of current primary research in order to provide an evidence base for the study. Phase 2 involved unstructured interviews with clinicians in the acute setting utilising the Grounded Theory approach to the analysis identify potential factors. Phase 3 was a Delphi study used to identify which of these factors would be useful in an education programme. Conclusions: The Systematic Review identified four themes "Patient Observation", "Knowledge of the Patient", "Communication" and "Attitudes of the Clinician". These were confirmed by the interviews and a further theme "Experience" identified. The over-arching theme emerging from the findings of the interviews was that clinicians have a fear of getting the timing of the recognition of irreversible dying wrong because the decision making process is so complex and this is exacerbated by fear of missing the treatable. Many factors identified in the interviews were acknowledged as factors that could be included in an education package. It was also identified that there is the need for a culture shift in society regarding death and dying and a change in the philosophy of care for health care professionals.

Contexte : L’annonce du passage de soins curatifs à des soins palliatifs précipite la personne sur son dernier chemin, avec l’angoisse qui surgit. Cette annonce amorce un processus de déliaison à l’origine de la souffrance. Au-delà d’une chronique d’une mort annoncée, comment accompagner ceux qui se trouvent à la dernière étape de leur vie afin qu’ils continuent à être sujet de désir, si ce n’est en soutenant leur force créatrice. Objectif: Mettre en place un dispositif hortithérapique standardisé et manuélisé spécifique à l’accompagnement de fin de vie ; et d’évaluer les processus mobilisés et les effets hortithérapiques.Méthode: L’échantillon est composé de 106 sujets dont l’âge moyen est de 81,9 ans (σ = 8,33: extrêmes : de 57 à 97 ans).Principaux résultats: Les principaux résultats révèlent un effet bénéfique de l’hortithérapie ainsi que des différentes techniques sur les états de base, les attitudes et les processus de création.Nous retrouvons un maintien des états de base et l’intention pour l’ensemble des techniques malgré l’évolution de la maladie.Conclusion : A partir des résultats obtenus dans ce travail de recherche, des recommandations pour les bonnes pratiques en fonction des populations rencontrées ont été élaborées. / Background: The announcement of the passage of curative to palliative care precipitates person on his last path with the anxiety that arises. This announcement begins a process of unbinding the origin of suffering. Beyond a chronicle of a death, how to support those who are in the last stage of their lives so they continue to be subject of desire if not supporting their creative force.Objective: Establish a standardized and specific tool to support end of life, and to evaluate the process and effects.Method: The sample consisted of 106 subjects with a mean age of 81.9 years (σ = 8.33 : range, 57 to 97 years).Main results: The main results show a beneficial effect of horticultural therapy as well as different techniques on the basis states, attitudes and creative process.We find a continuation of basic states and intent for all technical despite the evolution of the disease.Conclusion: From the results obtained in this research, recommendations for good practice based on populations encountered were developed.

Arguably life threatening and chronic illness is not just an attack on the body, it is an attack on a person s sense of self-identity, shattering the means by which a person experiences the world, and by which they also are experienced, contributing to a person s sense of powerlessness and distress. People living with a life threatening or chronic illness, often describe the impact of their diagnosis, treatment and illness as having changed their sense of self-identity beyond all recognition. Seven participants, purposefully selected from those attending a weekly day-hospice session in Wiltshire, took part in the study. This qualitative, practice-based research project challenges the power dynamics in art therapy and attempts to equalise the relationship between researcher and participant through the development of a collaborative intersubjective relationship, within which the participants are recognised as experts on their lived experience, and in a series of negotiations , co-design their own portraits directing how they wish to be portrayed. Through this process the participants become patient/researchers (PRs) and the artist/therapist/researcher (ATR), by creating the portraits, also becomes a reflexive participant . This project utilises an in-depth multiple case-study design and multiple creative data generation methods as well as a phenomenological approach to data analysis. This project reverses the terms of engagement within art therapy and uses the art therapist s artistic practice or third hand to create portraits for patients. (This is based upon the assumption that most art therapy theories terms of engagement include patients producing art within the therapeutic encounter, however some psychodynamic and psychoanalytic art therapists may use client art generation selectively or not at all). This raises important questions around who makes the artwork in art therapy interventions . The use of portraiture as a third hand intervention enables the art therapist to develop a sense of positive focussed attention and mirroring and attunement through the art object, enabling the addition of coherence through aesthetic resonance and the holding of dualities through metaphor and symbolism. The results of this study demonstrate the power of portraiture as an intersubjective way of knowing, being and relating, enabling the revisioning of identities disrupted by illness, characterised by increases in participants creative capacity to adapt to illness and feelings of home-like-being-in-the-world, developing a stronger, more coherent lived experience of self-identity, effecting closure to difficult life experiences, and improving their overall quality of life.