Palliative medicine has traditionally focused on people affected by cancer with rapidly advancing disease progression. However, as more people live longer time with serious illnesses, including lung diseases, the need of palliative care for these patients if also increasing. There is a lack of research and clinical knowledge about what palliative care is for people affected by chronic obstructive pulmonary disease and interstitial lung disease. The aim of this paper is to describe the development process of an easy to use and clinically relevant model for the palliative care approach in people affected by severe illnesses. The developed model consists of four components, which originated the title” 4,2,4,2 model”. Each number has a specific meaning: the first 4 = the four disease trajectories that patients may experience; 2 = the two forms of knowledge, objective, and intuitive that must be achieved by the health professionals to gain an understanding of the situation; 4 = the four dimensions of suffering physically, mentally, socially and existentially/spiritually; and 2 = the two roles that health-care professionals must be able to take in when treating patients with serious illnesses. The 4-2-4-2 model proposes an easy-to-use and clinically relevant model for palliative approach and integration of PC and pulmonary medicine. Another important purpose of this model is to provide HPs with different educational backgrounds and from different medical fields with a ‘golden standard approach’ to enhance the focus of the palliative approach in both the clinic and teaching. The effect and consequences of the use of the 4-2-4-2 model should be explored in future clinical trials. Furthermore, it should be investigated whether teaching the model creates a change in clinical approach to patients with serious illnesses as well as whether these changes are long-lasting.
BackgroundThe dominant story of HIV in Denmark portrays HIV as compatible with a nearly normal life. International research on the experiences of elderly people diagnosed with human immunodeficiency virus (HIV) in the 1980s to mid‐1990s challenges this narrative.AimsTo gain knowledge on the experiences of elderly long‐term survivors of HIV in Denmark and to evaluate if a narrative intervention ‘giving voice’ to this specific group was experienced as improving their quality of life.MethodsIn collaboration with relevant stakeholders, we developed a narrative intervention at REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care focusing on the experiences and stories of people having lived a long life with HIV. Nineteen women and men living with HIV were included in the study. The intervention's evaluation design was based on ethnographic fieldwork that included participant observation and focus group interviews. The qualitative data were analysed using thematic content analysis.ResultsThe findings show that the dominant story on HIV does not adequately cover the experiences of elderly Danes who have lived a long life with HIV. The participants continue to suffer from late complications and physical, existential, emotional and social challenges. The narrative intervention helped improve how participants experienced their quality of life.ConclusionLong‐term elderly Danish survivors diagnosed with HIV in the 1980s to mid‐1990s suffer from complex symptoms and problems related to living their lives with HIV and treatment. They found that telling and sharing their life stories with other people with HIV gave them a sense of coherence, meaning and direction in life.RelevanceThe study documents the experiences of a group of long‐term survivors of HIV in Denmark, making it relevant for organisations supporting people with HIV and for health care professionals working with this group. Furthermore, the study adds to the knowledge base on the use of narrative methods in rehabilitation.
Artiklen tager udgangspunkt i et tværfagligt samarbejde på Bispebjerg hospitals palliative afdeling i København, hvor vi som henholdsvis psykolog og præst har valgt at føre samtalerne med vores patienter og pårørende fagligt sammen. De erfaringer, vi hermed giver videre, er også baseret på et sorggruppeforløb, vi sammen har ledet. Det metodiske omdrejningspunkt i vores samarbejde har været inspireret af Søren Kierkegaard og hans brug af kropslige metaforer, som vi mener tilbyder sig som et brugbart alternativ til en dogmatisk og psykologisk sprogbrug, og i forlængelse heraf har vi benyttet os af croquisdukker for at kunne arbejde med en visuel fiksering af henholdsvis følelse og Gudsbillede. Endvidere har vi ladet os inspirere af G. Lakoff og M. Johnsons beskrivelser af forskellige fysiske prespåvirkninger som konstituerende for sproget, og med disse forskellige beskrivelser af pres går vi fænomenologisk til værks både i forhold til psykologiske og teologiske emner.
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