scholarly journals Audiobooks from terminally ill parent for their children – a qualitative evaluation

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Henning Cuhls ◽  
Michaela Hesse ◽  
Gülay Ates ◽  
Lukas Radbruch
Keyword(s):  
Palliative Care ◽  
Young Children ◽  
Terminally Ill ◽  
Qualitative Evaluation ◽  
Life Review ◽  
Main Theme ◽  
Young Parents ◽  
Dignity Therapy ◽  
Limited Life

Abstract Background Improving the quality of life is one of the main objectives of palliative care. Biographical approaches are often used in combination with leaving a legacy in a range of different interventions such as Dignity Therapy or Life Review. This study presents an evaluation of audiobook biographies for palliative care patients with young children. Methods Young parents diagnosed with a life-limiting disease could participate and create an audiobook for their young children. The audiobook itself was recorded over several days and edited by qualified radio journalists. After providing informed consent participants were interviewed twice over the course of the intervention regarding expectations, concerns, motivation, and experiences. Interviews and notes were transcribed verbatim and were analyzed using content analysis. The contents of the audiobooks are not part of the evaluation. Results The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of 7 years were included and created an audiobook. The main theme of all interviews were the children. Within this field identified main topics were legacy, motivation, usage, benefit, aims, difficulties and worries in descending order. All patients would recommend the intervention. Conclusion Creating an audiobook as a legacy to their children seemed to help the diseased parents to cope with their limited life span.

scholarly journals Audiobooks from terminally ill parent for their children – a qualitative evaluation

2021 ◽  
Author(s):  
Henning Cuhls ◽  
Michaela Hesse ◽  
Gülay Ates ◽  
Lukas Radbruch
Keyword(s):  
Palliative Care ◽  
Young Children ◽  
Terminally Ill ◽  
Qualitative Evaluation ◽  
Life Review ◽  
Main Theme ◽  
Young Parents ◽  
Dignity Therapy ◽  
Limited Life

Abstract Background Improving the quality of life is one of the main objectives of palliative care. Biographical approaches are often used in combination with leaving a legacy in a range of different interventions such as Dignity Therapy or Life Review. This study presents an evaluation of audiobook biographies for palliative care patients with young children. Methods Young parents diagnosed with a life-limiting disease could participate and create an audiobook for their young children. The audiobook itself was recorded over several days and edited by qualified radio journalists. After providing informed consent participants were interviewed twice over the course of the intervention regarding expectations, concerns, motivation, and experiences. Interviews and notes were transcribed verbatim and were analyzed using content analysis. Results The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of seven years were included and created an audiobook. The main theme of all interviews were the children. Within this field identified main topics were legacy, motivation, usage, benefit, aims, difficulties and worries in descending order. All patients would recommend the intervention.Conclusion Creating an audiobook as a legacy to their children seemed to help the diseased parents to cope with their limited life span.

Dignity therapy, psycho-spiritual well-being and quality of life in the terminally ill: systematic review and meta-analysis

2021 ◽  
pp. bmjspcare-2021-003180
Author(s):  
Ruishuang Zheng ◽  
Qiaohong Guo ◽  
Zhiqian Chen ◽  
Yingchun Zeng
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Terminally Ill ◽  
Well Being ◽  
Cochrane Library ◽  
Anxiety And Depression ◽  
Terminally Ill Patients ◽  
Dignity Therapy ◽  
Spiritual Well Being

ObjectivesDignity therapy (DT) is a brief, individualised psychotherapy that aims to alleviate psychosocial and spiritual distress in the final stages of life. It is unknown yet whether DT can enhance sense of dignity and improve psychological and spiritual well-being as well as quality of life of terminally ill patients.MethodsWe searched PubMed, EMBASE, CINAHL plus, ProQuest Health & Medical Complete, PsycINFO and the Cochrane Library, as well as Chinese databases including Weipu Data, Wanfang Data and China National Knowledge Infrastructure from inception to 30 April 2021, for randomised controlled trials (RCTs) assessing the effects of DT on dignity, psycho-spiritual well-being and quality of life of terminally ill patients receiving palliative care.ResultsWe identified 507 unique records, and included 9 RCTs (871 participants). Comparator was standard palliative care. DT did not improve terminally ill patients’ sense of dignity (p=0.90), hope (p=0.15), spiritual well-being (p=0.99) and quality of life (p=0.23). However, DT reduced anxiety and depression after intervention (standardised mean difference, SMD=−1.13, 95% CI (−2.21 to –0.04), p=0.04; SMD=−1.22, 95% CI (−2.25 to –0.18), p=0.02, respectively) and at 4 weeks post-intervention (SMD=−0.89, 95% CI (−1.71 to –0.07), p=0.03; SMD=−1.26, 95% CI (−2.38 to –0.14), p=0.03, respectively).ConclusionDT can be offered as a psychological intervention for terminally ill patients to reduce their anxiety and depression. More studies are needed to further evaluate the effects of DT on terminally ill patients’ dignity, spiritual well-being and quality of life.

Anxiety Disorders in Palliative Care

2014 ◽  
pp. 19-28
Author(s):  
William S. Breitbart
Keyword(s):  
Palliative Care ◽  
Anxiety Disorders ◽  
Medical Condition ◽  
Terminally Ill ◽  
Adjustment Disorder ◽  
Assessment Tools ◽  
Pharmacological Agents ◽  
General Medical Condition ◽  
Severe Anxiety

Anxiety is common in palliative care patients and may significantly impact patients’ quality of life. Anxiety can have many etiologies resulting in different anxiety syndromes, ranging from adjustment disorder, anxiety resulting from general medical condition, to medication-induced anxiety disorders. Pre-existing anxiety disorders should also be taken into consideration in palliative care settings. Different screening and assessment tools have been used to improve recognition and assessment of anxiety in the terminally ill. Treatment of anxiety in this patient population includes use of a variety of pharmacological agents to relieve severe anxiety symptoms and use of psychotherapy interventions that have been shown to be safe and effective in the terminally ill. This chapter includes an overview of the prevalence, assessment, and management of anxiety disorders in palliative care settings.

scholarly journals Ethical sensitivity and perceptiveness in palliative home care through co-creation

2019 ◽  
Vol 27 (2) ◽  
pp. 446-460
Author(s):  
Jessica Hemberg ◽  
Elisabeth Bergdahl
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Home Care ◽  
Future Research ◽  
Main Theme ◽  
Ethical Sensitivity ◽  
Ethical Perspective ◽  
Palliative Home Care ◽  
Dying Patients

Background: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient’s quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients’ and their relatives’ needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the process of shared knowledge between nurses, patients and their relatives. Aim: The aim of this study was to explore nurses’ experiences of caring encounters and co-creation in palliative home care from an ethical perspective. Research design, participants, and research context: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. Ethical considerations: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Findings: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient’s wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. Discussion: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses’ ethical competence. Conclusion: Patients’ dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients’ perspectives should be the focus of future research.

Quality of life in terminally ill patients – a challenge for future research

2013 ◽  
Vol 21 (3) ◽  
Author(s):  
Cornelia Meffert ◽  
Gerhild Becker
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Studies ◽  
Palliative Medicine ◽  
Pain Therapy ◽  
Unsolved Problem ◽  
Terminally Ill ◽  
Future Research ◽  
Outcome Criterion

SummaryRecent statistics reveal a substantial and even growing need for palliative care in present-day society. Providing adequate pain therapy remains a largely unsolved problem, mainly because of the small number of clinical studies in palliative medicine. Hence, clinical research is urgently needed – and therefore suitable tools to measure outcomes must be developed. Contrary to typical clinical studies, the usual outcome parameters such as decreased mortality and/or morbidity are unsuitable. Future research should focus on developing an instrument which allows to measure quality of life as the central outcome criterion of clinical studies in palliative medicine.

scholarly journals Effect of dignity therapy on end-of-life psychological distress in terminally ill Portuguese patients: A randomized controlled trial

2017 ◽  
Vol 15 (6) ◽  
pp. 628-637 ◽  
Author(s):  
Miguel Julião ◽  
Fátima Oliveira ◽  
Baltazar Nunes ◽  
António Vaz Carneiro ◽  
António Barbosa
Keyword(s):  
Palliative Care ◽  
Randomized Controlled Trial ◽  
Psychological Distress ◽  
End Of Life ◽  
Controlled Trial ◽  
Terminally Ill ◽  
Control Group ◽  
Randomized Controlled ◽  
Dignity Therapy ◽  
Desire For Death

ABSTRACTObjective:Dignity therapy (DT) is a brief form of psychotherapy developed for patients living with a life-limiting illness that has demonstrated efficacy in treating several dimensions of end-of-life psychological distress. Our aim was to determine the influence of DT on demoralization syndrome (DS), the desire for death (DfD), and a sense of dignity (SoD) in terminally ill inpatients experiencing a high level of distress in a palliative care unit.Method:A nonblinded phase II randomized controlled trial was conducted with 80 patients who were randomly assigned to one of two groups: the intervention group (DT + standard palliative care [SPC]) or the control group (SPC alone). The main outcomes were DS, DfD, and SoD, as measured according to DS criteria, the Desire for Death Rating Scale, and the Patient Dignity Inventory (PDI), respectively. All scales were assessed at baseline (day 1) and at day 4 of follow-up. This study is registered with http://www.controlled-trials.com/ISRCTN34354086.Results:Of the 80 participants, 41 were randomized to DT and 39 to SPC. Baseline characteristics were similar between the two groups. DT was associated with a significant decrease in DS compared with SPC (DT DS prevalence = 12.1%; SPC DS prevalence = 60.0%; p < 0.001). Similarly, DT was associated with a significant decrease in DfD prevalence (DT DfD prevalence = 0%; SPC DfD prevalence = 14.3%; p = 0.054). Compared with participants allocated to the control group, those who received DT showed a statistically significant reduction in 19 of 25 PDI items.Significance of results:Dignity therapy had a beneficial effect on the psychological distress encountered by patients near the end of life. Our research suggests that DT is an important psychotherapeutic approach that should be included in clinical care programs, and it could help more patients to cope with their end-of-life experiences.

scholarly journals Dignity Therapy and Life Review for Palliative Care Patients: A Qualitative Study

2017 ◽  
Vol 54 (4) ◽  
pp. 530-537.e1 ◽  
Author(s):  
Dean Vuksanovic ◽  
Heather Green ◽  
Shirley Morrissey ◽  
Sharelle Smith
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Life Review ◽  
Dignity Therapy

scholarly journals Definitions for “palliative care”, “end-of-life” and “terminally ill” in oncology: a scoping review

2020 ◽  
Vol 9 (2) ◽  
pp. 205-228
Author(s):  
Franciele Roberta Cordeiro ◽  
Stefanie Griebeler Oliveira ◽  
Juliana Zeppini Giudice ◽  
Vanessa Pellegrini Fernandes ◽  
Adriéli Timm Oliveira
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Web Of Science ◽  
Functional Decline ◽  
Terminally Ill ◽  
Descriptive Statistics ◽  
Quality Of Death ◽  
Clinical Worsening

Objective: to identify and map the definitions for palliative care, end of life, and terminally ill in the oncology literature. Materials and method: scoping review guided by Joanna Brigs Institute recommendations. We analyzed original articles, published between 2012 and 2017, indexed in the databases Pubmed, Web of Science and Scopus. The data collection resulted in 51 articles selected for analysis. Also, we have consulted the websites of 25 palliative care societies from countries best ranked in The Economist’s Quality of Death Ranking. The data were analyzed through descriptive statistics, and summary of the themes, in this case the definitions. Results: terminally ill is a disease with a prognosis of lifetime ranging between hours and months, there is clinical worsening, functional decline, and presence of metastases. Palliative care aims to promote quality of life and dignity. End of life is the period of up to 12 months before death. Conclusions: we constructed synthesis and definitions for the concepts investigated. Thus, it was possible to contribute to the adoption of a standardized language in care and investigations with cancer patients in end-of-life

scholarly journals Meaning in Life of Terminally Ill Parent with Young Children – A Quantitative Evaluation with SMiLE

2021 ◽  
Author(s):  
Henning Cuhls ◽  
Gülay Ateş ◽  
Gregory Heuser ◽  
Lukas Radbruch ◽  
Michaela Hesse
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Young Children ◽  
Social Relations ◽  
Meaning In Life ◽  
Home Garden ◽  
Post Intervention ◽  
Perceived Quality Of Life ◽  
Young Parent

Abstract Background Increasing the quality of life is one of the objectives of palliative care. Meaning in life has a significant influence on the perceived quality of life. We found no studies focusing on patients with young children.Methods Young parents diagnosed with life-limiting disease could participate and create an audiobook. Patients were assessed using Schedule for Meaning in Life Evaluaton (SMiLE) pre and post intervention. The SMiLE is a validated instrument to assess meaning in life. Patients list their individual items that provide meaning in life. In a second step they are requested to rate their current level of satisfaction and in a last step they are asked to rank the importance of each item. Overall indices of weighting, satisfaction and importance are calculated. In addition, participants were interviewed twice over the course regarding expectations, concerns, motivation, and experiences.ResultsThe data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of seven years could be included. The involvement with the SMiLE made patients think about their resources. Most important items were in decreasing order family (100%), social relations (79.6%), leisure time (61.1%), nature/animals (38.9%), and home/garden (29.6%). Index of weighting (IOW) was 81.5, index of satisfaction (IOS) was 71.4, and a total SMiLE Index (IOWS) was 72.4. Parent felt limited by their illness in being a mother or father, as they wanted to be.ConclusionItems relevant for young parent showed differences to evaluations of cancer patients and palliative care patients. Most important item for meaning in life is the family numerated by all participants. The results indicate that evaluation of meaning in life is a coping strategy and helps young parent with young children.

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