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Behavioral Sciences
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Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making...
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Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making and Bereavement between Prevention, Engagement, Resilience and Spirituality

A special issue of Behavioral Sciences (ISSN 2076-328X).

Deadline for manuscript submissions: 25 June 2024 | Viewed by 11513

Special Issue Editors

Prof. Dr. Ines Testoni

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Guest Editor
1. Director Master, Death Studies & The End of Life, Department of Philosophy, Sociology, Education and Applied Psychology (FISPPA), University of Padova, Padova, Italy
2. Research Fellow, Emili Sagol Creative Arts Therapies Research Center, University of Haifa, Haifa, Israel
Interests: death; dying; palliative care; ethnographic and longitudinal research; effectiveness of psychological interventions with standardized instruments; dignity in end-life; self-determination in end-life choices; support for dying people; support for caregivers; anxiety of death and its management; representations of death; Terror Management Theory; spirituality and religiosity; epistemology of ontological representations of life
Special Issues, Collections and Topics in MDPI journals
Prof. Dr. Santo Di Nuovo

E-Mail Website
Guest Editor
Department of Education, Università degli Studi di Catania, 2, 95124 Catania, Italy
Interests: psychology research; methodology; assessment; forensic psychology; artificial intelligence
Dr. David Lazzari

E-Mail Website
Guest Editor
Unit of Clinical Psychology, Hospital of Terni, Terni, Italy
Interests: health psychology; behavioral health research; burnout; health behavior

Special Issue Information

Dear Colleagues,

Palliative psychology is an increasingly important field of study and research in the area of palliative care, a complex form of care for people living with a serious illness, aimed to enhance quality of life for both the patient and their family, providing relief from the symptoms and distress. Indeed, the role of psychology in palliative care affects all areas of supportive intervention for at every stage of the illness. Simultaneous care involves taking care of the patient and his or her family from breaking bad news to grieving after death. Research, intervention and education in the field of psychology offer increasingly effective tools for all those working in palliative care. The professional skills required in palliative care are in fact grounded in Psychology because they are inherent in the areas of relationships, communication, stress management and emotions.

In this broad territory, diagnostic and operational tools for managing decision-making processes, distress caused by the experience of loss and bereavement, compassion fatigue, burden, moral distress, and burnout among professionals emerge in importance. Moreover, the most innovative intervention techniques increasingly value the use of creative arts therapies, spirituality, and engagement strategies with patients, family members, and health professionals for strengthening resilient resources and social support networks.

Main topics:

  • Decision making processes in End of Life (EOL);
  • Cultural conflicts in the EOL processes;
  • Grief and bereavement management;
  • Improvement of social support;
  • Strategies for improving the family engagement;
  • Spirituality, religiosity and resilience;
  • Prevention of burden, burnout, moral distress, emotional labour;
  • Assessment for professionals, families and patients facing death.
  • Statistical models to the role of different variables involved in burnout, distress, prolonged grief;
  • Psychological education for professionals in palliative care.

Prof. Dr. Ines Testoni
Prof Dr. Santo Di Nuovo
Dr. David Lazzari
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Behavioral Sciences is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2200 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Published Papers (7 papers)

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Research

19 pages, 496 KiB  
Article
Spiritual Care through the Lens of Portuguese Palliative Care Professionals: A Qualitative Thematic Analysis
by Juliana Matos, Ana Querido and Carlos Laranjeira
Behav. Sci. 2024, 14(2), 134; https://doi.org/10.3390/bs14020134 - 13 Feb 2024
Viewed by 1204
Abstract
Providing spiritual care is paramount to patient-centered care. Despite the growing body of data and its recognized importance in palliative care, spiritual care continues to be the least advanced and most overlooked aspect. This study aims to explore the perceptions and experiences of [...] Read more.
Providing spiritual care is paramount to patient-centered care. Despite the growing body of data and its recognized importance in palliative care, spiritual care continues to be the least advanced and most overlooked aspect. This study aims to explore the perceptions and experiences of spiritual care from the perspective of PC professionals and identify their strategies to address spiritual care issues. Data were collected through semi-structured personal interviews and managed using WebQDA software (Universidade de Aveiro, Aveiro, Portugal). All data were analyzed using thematic content analysis, as recommended by Clark and Braun. The study included 15 palliative care professionals with a mean age of 38.51 [SD = 5.71] years. Most participants identified as lacking specific training in spiritual care. Thematic analysis spawned three main themes: (1) spiritual care as key to palliative care, (2) floating between “shadows” and “light” in providing spiritual care, and (3) strategies for competent and spiritual-centered care. Spiritual care was considered challenging by its very nature and given the individual, relational, and organizational constraints lived by professionals working in palliative care. With support from healthcare institutions, spiritual care can and should become a defining feature of the type, nature, and quality of palliative care provision. Care providers should be sensitive to spiritual needs and highly skilled and capable of an in-the-moment approach to respond to these needs. Further research on educating and training in spiritual care competence is a priority. Full article
(This article belongs to the Special Issue Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making and Bereavement between Prevention, Engagement, Resilience and Spirituality)
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19 pages, 314 KiB  
Article
Assessment of Parental Needs and Quality of Life in Children with a Rare Neuromuscular Disease (Pompe Disease): A Quantitative–Qualitative Study
by Loredana Benedetto, Olimpia Musumeci, Annunziata Giordano, Mattia Porcino and Massimo Ingrassia
Behav. Sci. 2023, 13(12), 956; https://doi.org/10.3390/bs13120956 - 21 Nov 2023
Viewed by 1259
Abstract
Pompe disease (PD) is a rare metabolic disorder with progressive neuromuscular consequences that negatively impact a child’s development and quality of life (QoL). Despite an improved prognosis with treatment, the risk for early death due cardiorespiratory crisis remains. Parents not only face physical [...] Read more.
Pompe disease (PD) is a rare metabolic disorder with progressive neuromuscular consequences that negatively impact a child’s development and quality of life (QoL). Despite an improved prognosis with treatment, the risk for early death due cardiorespiratory crisis remains. Parents not only face physical fatigue and family distress in coping with the child’s special needs but also experience emotions, worries, and unexpressed needs (a “humanistic burden”) that require supportive interventions. Fourteen parents of children with PD completed an online self-report questionnaire assessing their child’s QoL, their own parental burden of care, and disease-related issues. The aim was to estimate the associations between the child’s QoL and the caregiver’s burden levels. Three mothers were also interviewed. A total of 57.1% of parents lived with moderate/severe burden conditions; worse QoL for the child was associated with higher levels of caregiver burden (rS[N = 14] = −0.67, p < 0.01). Uncertainty about the child’s future was a state commonly described by mothers. However, the child’s resilience, normalization of disease, and coping strategies (primarily positive appraisal and focusing on the present) alleviated suffering and helped mothers maintain family functioning. Finally, dissatisfaction with communication in relationships with professionals emerged. In conclusion, a typical pediatric palliative care approach is recommended since it manages to guarantee parents empathetic and supportive communication from healthcare professionals, alleviating feelings of isolation and loneliness in parents. Full article
(This article belongs to the Special Issue Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making and Bereavement between Prevention, Engagement, Resilience and Spirituality)
16 pages, 1790 KiB  
Article
Impact of Teaching Palliative Psychology with Psychodrama and Arts Therapies on Psychology Students in Klagenfurt
by Michael Alexander Wieser and Alexandra Leitner
Behav. Sci. 2023, 13(11), 931; https://doi.org/10.3390/bs13110931 - 15 Nov 2023
Viewed by 1491
Abstract
The Erasmus+ project “Death Education for Palliative Psychology” (DE4PP) under the coordination of the University of Padua investigated the effects of teaching palliative psychology with psychodrama and arts therapies, as positive effects on students’ attitudes towards life and death were suspected through the [...] Read more.
The Erasmus+ project “Death Education for Palliative Psychology” (DE4PP) under the coordination of the University of Padua investigated the effects of teaching palliative psychology with psychodrama and arts therapies, as positive effects on students’ attitudes towards life and death were suspected through the use of these forms of treatment. Five countries participated in this project funded by the European Commission (Austria, Israel, Italy, Poland, and Romania). In Klagenfurt (Austria), 34 students from the University of Klagenfurt completed the pilot course entitled “Palliative Psychology” generated by the project partners. Course participants filled out psychological and satisfaction questionnaires at the beginning and end of the course, to measure the impact of teaching palliative psychology with psychodrama and arts therapies. The research involved a control group. In addition, six participants in the course participated in a focus group interview at the end, which included questions about their experience of the course; the impact of arts therapies and psychodrama techniques; experiences of verbal and artistic processing of death anxiety; and the meaning of life and death, representation of death, and associated feelings. The results, in summary, showed that processing of life and death had occurred in the participants due to the course they had completed. As part of the course, creative arts and psychodrama were bridges to death. Filling out satisfaction questionnaires, photovoice assignments, role reversal, and visualizing a personal social atom were seen by students in Klagenfurt as particularly effective methods for self-reflection. Full article
(This article belongs to the Special Issue Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making and Bereavement between Prevention, Engagement, Resilience and Spirituality)
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15 pages, 715 KiB  
Article
Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups
by Lorenza Palazzo, Laura Pizzolato, Matteo Rigo and Giuseppina Bondì
Behav. Sci. 2023, 13(10), 822; https://doi.org/10.3390/bs13100822 - 05 Oct 2023
Viewed by 877
Abstract
This study employs a qualitative methodology to explore the effects of the pandemic on the lives of ALS patients and their caregivers. It aims to understand whether and how online self-help groups have assisted families dealing with amyotrophic lateral sclerosis (ALS) patients. ALS [...] Read more.
This study employs a qualitative methodology to explore the effects of the pandemic on the lives of ALS patients and their caregivers. It aims to understand whether and how online self-help groups have assisted families dealing with amyotrophic lateral sclerosis (ALS) patients. ALS is a neurodegenerative disease with both physical and psychosocial implications. Consequently, it significantly affects the lives of patients’ caregivers. In 2020, the COVID-19 pandemic exacerbated this situation. The results show that the pandemic has had a negative impact on the well-being of ALS caregivers and patients. Furthermore, bereavement and death were dealt with in different ways by the families involved. The pandemic aggravated the health of ALS patients and increased the workload of their caregivers; however, online psychological support was appreciated for its role in providing emotional help and diminishing social isolation. Full article
(This article belongs to the Special Issue Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making and Bereavement between Prevention, Engagement, Resilience and Spirituality)
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12 pages, 281 KiB  
Article
Self-Transcendence: Association with Spirituality in an Italian Sample of Terminal Cancer Patients
by Andrea Bovero, Sara Pesce, Rossana Botto, Valentina Tesio and Ada Ghiggia
Behav. Sci. 2023, 13(7), 559; https://doi.org/10.3390/bs13070559 - 05 Jul 2023
Cited by 1 | Viewed by 1666
Abstract
Terminally ill cancer patients often experience demoralization and loss of dignity, which undermines their spiritual wellbeing, which could, however, be supported by the presence of other factors such as self-transcendence and religious coping strategies. To assess self-transcendence and religious coping strategies and how [...] Read more.
Terminally ill cancer patients often experience demoralization and loss of dignity, which undermines their spiritual wellbeing, which could, however, be supported by the presence of other factors such as self-transcendence and religious coping strategies. To assess self-transcendence and religious coping strategies and how they influence spirituality, we studied 141 end-stage cancer patients (64.3% male; mean age 68.6 ± 14.6) with a Karnofsky Performance Status ≤ 50 and a life expectancy ≤ 4 months using the Self-Transcendence Scale, the Demoralization Scale, the Functional Assessment of Chronic Illness Therapy—Spiritual Wellbeing (FACIT-Sp-12), the Brief Religious COPE, and the Patient Dignity Inventory. To understand the effects of these variables on spirituality, hierarchical multiple regression was performed on FACIT-Sp-12. The final model predicted 67% of the variance in spiritual wellbeing. Demoralization was the strongest influencing factor (β = −0.727, p < 0.001), followed by self-transcendence (β = 0.256, p < 0.001), and positive religious coping (β = 0.148, p < 0.05). This study suggests that self-transcendence and positive religious coping may be protective factors for spirituality in terminal cancer patients. These factors should be considered in treatment to promote spiritual wellbeing and improve patients’ quality of life at the end of life. Full article
(This article belongs to the Special Issue Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making and Bereavement between Prevention, Engagement, Resilience and Spirituality)
18 pages, 303 KiB  
Article
Interest and Confidence in Death Education and Palliative Psychology in Italian and Indian University Students of Psychology: Similarities and Differences
by Gianmarco Biancalani, Rekha Wagani, Lucia Ronconi, Matteo Cornacchini and Ines Testoni
Behav. Sci. 2023, 13(2), 183; https://doi.org/10.3390/bs13020183 - 17 Feb 2023
Cited by 2 | Viewed by 1324
Abstract
Teaching death education and palliative psychology in universities has proven to be of great importance, especially in the health professions. The present study aims to evaluate the similarities and differences in interest and confidence in death education and palliative psychology between university psychology [...] Read more.
Teaching death education and palliative psychology in universities has proven to be of great importance, especially in the health professions. The present study aims to evaluate the similarities and differences in interest and confidence in death education and palliative psychology between university psychology students from two culturally different countries: Italy and India. For this study, 63 Italian and 35 Indian psychology students were recruited to take part in a course on death education and palliative psychology. The results showed the positive impact of a death education and palliative psychology course on the training of professionals. In particular, this course was useful in helping students become familiar with and learn how to manage future professional situations related to death and dying. Specific differences between the two countries also emerged, particularly with regard to their approach to the end-of-life field, due to different cultural contexts. There is still much to be done by institutions to improve the dissemination and academic teaching of this area, which in turn can promote job opportunities for young people and encourage them to work in this field. Full article
(This article belongs to the Special Issue Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making and Bereavement between Prevention, Engagement, Resilience and Spirituality)
15 pages, 298 KiB  
Article
Death Education for Palliative Psychology: The Impact of a Death Education Course for Italian University Students
by Lucia Ronconi, Gianmarco Biancalani, Georgiana Alexandra Medesi, Hod Orkibi and Ines Testoni
Behav. Sci. 2023, 13(2), 182; https://doi.org/10.3390/bs13020182 - 16 Feb 2023
Cited by 5 | Viewed by 2754
Abstract
The present study investigated the effects of a hybrid online course on a group of Italian Master’s degree students involved in a European Erasmus+ project. The course was composed of nine modules about death education, palliative psychology and the use of creative arts [...] Read more.
The present study investigated the effects of a hybrid online course on a group of Italian Master’s degree students involved in a European Erasmus+ project. The course was composed of nine modules about death education, palliative psychology and the use of creative arts therapies—such as psychodrama, intermodal psychodrama and photovoice—in the end-of-life-field. The project involved 64 students in the experimental group (who attended the course) and 56 students as the control group. Both groups completed an online questionnaire before and after the delivery of the course and 10 students from the experimental group participated in a focus group at the end of the course. The quantitative analysis revealed that the experimental group students showed lesser levels of perception of death as annihilation, fear of the death and death avoidance, while they increased their levels of death acceptance, creative self-efficacy and attitude toward the care of the dying. Qualitative analysis identified three main themes: the positive impact of the course on death education and end-of-life care; the role of art therapies on death and end-of-life care; and the unhelpful facets of the course. Overall, this intervention changed the perception and the feelings of the students regarding the themes of death and palliative psychology and increased their creative self-efficacy and their interest in working in an end-of-life field. Full article
(This article belongs to the Special Issue Innovations in Palliative Psychology: Tools for Managing Stress, Decision Making and Bereavement between Prevention, Engagement, Resilience and Spirituality)
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