scholarly journals The Hospice as a Learning Environment: A Follow-Up Study with a Palliative Care Team

2020 ◽  
Vol 17 (20) ◽  
pp. 7460 ◽  
Author(s):  
Ines Testoni ◽  
Vito Fabio Sblano ◽  
Lorenza Palazzo ◽  
Sara Pompele ◽  
Michael Alexander Wieser
Keyword(s):  
Palliative Care ◽  
Western Society ◽  
Death Education ◽  
Structured Interviews ◽  
Negative Effects ◽  
Community Attitudes ◽  
Medical Language ◽  
Positive Effect ◽  
Education Initiative

In Western society, the topic of death has been removed from everyday life and replaced with medical language. Such censorship does not reduce individuals’ fear of death, but rather limits their ability to elaborate their experiences of death, thus generating negative effects. The objective of this follow-up qualitative study was to detect how and if death education can help to improve individuals’ relationship with death and enhance care environments like hospices. Semi-structured interviews were conducted with palliative care professionals and teachers who had taken part in a death education initiative three years earlier. The results confirmed the initiative’s positive effect on both palliative care professionals and teachers. The participants reported that the education initiative helped them to positively modify their perspective on death, end-of-life care, and their own relationship to life, as well as their perception of community attitudes towards the hospice, which seemed to become less discriminatory. This study confirmed that school education initiatives can usefully create continuity between hospices and local communities. This project provided an educational space wherein it was possible for participants to elaborate their experiences in relation to death and to re-evaluate and appreciate hospices.

scholarly journals The hospice as a learning environment: A follow-up, qualitative study with palliative care professionals and school teachers involved in a previous death education intervention

2020 ◽  
Author(s):  
Ines Testoni ◽  
Fabio Vito Sblano ◽  
Lorenza Palazzo ◽  
Sara Pompele ◽  
Michael Alexander Wieser
Keyword(s):  
Palliative Care ◽  
Death And Dying ◽  
Western Society ◽  
Education Intervention ◽  
Death Education ◽  
Structured Interviews ◽  
Negative Effects ◽  
Community Attitudes ◽  
Qualitative Research Study

Abstract Background: In Western society, discussions about death have shifted from the domain of the everyday to the domain of medicine. Such censorship does not reduce the fear of death; rather, it deprives people of the means to elaborate their experiences of death, generating negative effects such as difficult mourning and stigmatisation of palliative care environments. The objective of this follow-up study was to detect whether and how death education can help to improve individuals’ relationship with death. Methods: This was a qualitative research study based on grounded theory. We conducted semi-structured interviews with both palliative care professionals and teachers who had taken part in a death education intervention three years earlier. The interviews were interpreted through thematic analysis. Results: The results confirmed death education’s positive effect for both palliative care professionals and teachers. These individuals reported that the education initiative helped them to positively modify their perspectives on death and dying, as well as their attitudes towards life. It also helped to improve community attitudes towards the hospice and its workers. Conclusions: This study confirmed that school education initiatives can create continuity between hospices and local communities. The death education project provided an educational space in which it was possible to elaborate experiences linked to death and to re-evaluate and appreciate hospices and their staff.

scholarly journals The hospice as a learning environment: A follow-up study of a death education intervention that involved high-school students and the community

2019 ◽  
Author(s):  
Ines Testoni ◽  
Fabio Vito Sblano ◽  
Lorenza Palazzo ◽  
Sara Pompele ◽  
Michael Alexander Wieser
Keyword(s):  
Palliative Care ◽  
High School Students ◽  
End Of Life ◽  
Positive Impact ◽  
Western Society ◽  
Education Intervention ◽  
Death Education ◽  
Follow Up Study ◽  
Education Initiative

Abstract Background The theme of death in Western society has been removed from everyday life and replaced with specialized medical language. Such censorship does not reduce the fear of death, especially among young people, and it limits the possibility to elaborate on experiences linked to death, generating negative effects, especially in cases of traumatic grief. The objective of this follow-up study was to detect how and if experiences of death education changed the relationship between the community and a local hospice in relation to the theme of death and to the elaboration and management of suicide. Methods This was a qualitative research study based on semi-structured interviews with palliative care professionals and teachers of students who had taken part in a death education intervention 3 years earlier. The interviews were examined through thematic analysis. Results The results confirmed the efficacy of the death education intervention initiated 3 years earlier. The education initiative contributed to modifying the students’ and teachers’ perspectives of end-of-life professionals and their understanding of the structures within which palliative care is implemented. It also modified the participants’ perspectives on the representation of death and promoted a new outlook on life. The hospice staff also perceived a change in the attitudes of the community, and this change had a positive impact on their everyday work. Conclusions This study confirmed the usefulness of creating continuity between a hospice and the community through a school education initiative. The death education project provided an educational space in which it was possible to elaborate on experiences linked to death and to re-evaluate and appreciate the structures of end-of-life care and the professionals who work in the area. Keywords: Hospice, Palliative care, Death education, Adolescents, Suicide.

scholarly journals The hospice as a learning environment: A follow-up study of a death education intervention that involved high-school students and the community

2020 ◽  
Author(s):  
Ines Testoni ◽  
Fabio Vito Sblano ◽  
Lorenza Palazzo ◽  
Sara Pompele ◽  
Michael Alexander Wieser
Keyword(s):  
Palliative Care ◽  
High School Students ◽  
End Of Life ◽  
Positive Impact ◽  
Western Society ◽  
Education Intervention ◽  
Death Education ◽  
Follow Up Study ◽  
Education Initiative

Abstract Background The theme of death in Western society has been removed from everyday life and replaced with specialized medical language. Such censorship does not reduce the fear of death, especially among young people, and it limits the possibility to elaborate on experiences linked to death, generating negative effects, especially in cases of traumatic grief. The objective of this follow-up study was to detect how and if experiences of death education changed the relationship between the community and a local hospice. Furthermore, it was stressed the theme of representation of death, in order to see whether participants were able to remind any possible attitude change following the project. Finally, it was analysed how they considered how they remembered the effect of the elaboration of the trauma caused by the suicide of a student. Methods This was a qualitative research study based on semi-structured interviews with palliative care professionals and teachers of students who had taken part in a death education intervention 3 years earlier. The interviews were examined through thematic analysis. Results The results confirmed the efficacy of the death education intervention initiated 3 years earlier. The education initiative contributed to modifying the students’ and teachers’ perspectives of end-of-life professionals and their understanding of the structures within which palliative care is implemented. It also modified the participants’ perspectives on the representation of death and promoted a new outlook on life. The hospice staff also perceived a change in the attitudes of the community, and this change had a positive impact on their everyday work. Conclusions This study confirmed the usefulness of creating continuity between a hospice and the community through a school education initiative. The death education project provided an educational space in which it was possible to elaborate on experiences linked to death and to re-evaluate and appreciate the structures of end-of-life care and the professionals who work in the area. Keywords: Hospice, Palliative care, Death education, Adolescents, Suicide.

scholarly journals The hospice as a learning space: a death education intervention with a group of adolescents

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ines Testoni ◽  
Lorenza Palazzo ◽  
Lucia Ronconi ◽  
Stefania Donna ◽  
Paolo Francesco Cottone ◽  
...  
Keyword(s):  
Thematic Analysis ◽  
Death And Dying ◽  
Western Society ◽  
Control Group ◽  
Education Intervention ◽  
Death Education ◽  
Negative Effects ◽  
School Students ◽  
Learning Space ◽  
Experimental Group

Abstract Background The denial of death in Western society deprives young people of the tools to derive meaning from experiences of death and dying. Literature shows that death education may allow them to become familiar with this topic without causing negative effects. This article describes the effects of a death education course with adolescents, wherein participants were given the opportunity to meet palliative doctors and palliative psychologists at school and in a hospice, where they were able to converse with the families of the dying. Methods This study used mixed methods and included an evaluation of a death education intervention with longitudinal follow-up of outcomes. The course involved 87 secondary school students (experimental group) aged between 16 and 20 years. We also recruited a control group of 76 similarly-aged students to observe differences. The variables we examined were: alexithymia, representation of death, value attributed to life and spirituality. These were measured with the following instruments: the Toronto Alexithymia Scale-20, the Testoni Death Representation Scale, the Personal Meaning Profile and the Spiritual Orientation Inventory, respectively. To better understand how the students perceived the experience, we asked the experimental group to answer some open-ended questions. Their answers were analysed through thematic analysis. Results The study showed that death education and the hospice experience did not produce negative effects, but rather allowed students to decrease alexithymia, improving their ability to recognise and express emotions. Thematic analysis revealed that all participants perceived the experience as very positive. Conclusions Our findings affirm that death education programs can be successfully implemented in high schools, and that they can usefully involve local hospices and palliative care professionals, especially physicians and psychologists.

scholarly journals The hospice as a learning environment: A follow-up, qualitative study with palliative care professionals and school teachers involved in a previous death education intervention

2020 ◽  
Author(s):  
Ines Testoni ◽  
Fabio Vito Sblano ◽  
Lorenza Palazzo ◽  
Sara Pompele ◽  
Michael Alexander Wieser
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Learning Environment ◽  
Education Intervention ◽  
Death Education ◽  
School Teachers

Abstract The authors have withdrawn this preprint due to author disagreement.

scholarly journals Suicide Prevention: University Students’ Narratives on Their Reasons for Living and for Dying

2021 ◽  
Vol 18 (15) ◽  
pp. 8029
Author(s):  
Ines Testoni ◽  
Silvia Piol ◽  
Diego De De Leo
Keyword(s):  
Social Isolation ◽  
Suicide Prevention ◽  
Protective Factor ◽  
New Technologies ◽  
Western Society ◽  
Death Education ◽  
Structured Interviews ◽  
Reasons For Living ◽  
Prevention Interventions ◽  
Main Ideas

Social isolation and loneliness are increasing in our contemporary western society and seem to correlate with suicide in adolescents and young adults. Social Workers are a potential resource to create such initiatives and projects that promote inclusion and cohesion within communities, a protective factor against suicide. Sixty-two Social Work BA students participated in a Death Education course based on education on suicide prevention. Participants carried out two activities. First, they were invited to complete two written semi-structured interviews on young people’s reasons for living and dying. Second, they were invited to design suicide prevention interventions targeted at their peers and adolescents. Data were analyzed qualitatively within the Thematic Analysis framework. As regards the first activity, four main themes were identified: (1) Internet and social media; (2) social isolation and loneliness; (3) the importance of proximal relationships; and, (4) the importance of networking between proximal relationships, educational institutions and mental health services. Whereas, as for suicide prevention interventions, three main ideas were identified: (1) suicide prevention through community and networking between services; (2) academic institutions: high schools and universities; and, (3) suicide prevention through new technologies. To conclude, Death Education as education on suicide prevention can offer young people a space in which to voice their and their peers’ reasons for living and dying and to reflect upon their contribution to suicide prevention as students and as future professionals.

A Palliative Approach to Existential Issues and Death in End-Stage Dementia Care

2002 ◽  
Vol 18 (3) ◽  
pp. 168-174 ◽  
Author(s):  
Lars Albinsson ◽  
Peter Strang
Keyword(s):  
Palliative Care ◽  
Structured Interviews ◽  
Next Of Kin ◽  
Life And Death ◽  
Dying Patients ◽  
The Family ◽  
End Stage ◽  
Phenomenographic Method ◽  
Existential Issues

The aim of this study was to investigate how, in relation to the palliative philosophy of care, municipal staff caring for patients with dementia deal with existential issues, the dying process, and bereavement follow up with next of kin. Methods: Thirty-one semi-structured interviews were performed and analyzed using a modified phenomenographic method. Results: Those interviewed experienced existential issues as difficult to handle, and they felt lost. Three patterns of answers emerged: 1) attempting to minimize or ignore the issue, 2) pleading, in relation to the patient, that no one has control over issues concerning life and death, and 3) showing affection for the patient. When faced with dying patients, they made things easier for the family, and their goal was that the patient should not be left alone. No systematic bereavement follow up of next of kin occurred. Discussion: Suggestions are made for improving municipal care, and applying palliative care principles for patients dying of dementia.

Individualized cancer follow-up supported by electronic Patient-Reported Outcomes: Development and evaluation (Preprint)

2020 ◽  
Author(s):  
Sissel Ravn ◽  
Henriette Vind Thaysen ◽  
Lene Seibaek ◽  
Victor Jilbert Verwaal ◽  
Lene Hjerrild Iversen
Keyword(s):  
Ct Scan ◽  
Advanced Cancer ◽  
Patient Reported Outcomes ◽  
Cost Benefit Analysis ◽  
Cost Benefit ◽  
Structured Interviews ◽  
European Organization ◽  
Individualized Care ◽  
Patient Reported

BACKGROUND Cancer survivors experience unmet needs during follow-up. Besides recurrence, a follow-up includes detection of late side effects, rehabilitation, palliation and individualized care. OBJECTIVE We aimed to describe the development and evaluate the feasibility of an intervention providing individualized cancer follow-up supported by electronic patient-reported outcomes (e-PRO). METHODS The study was carried out as an interventional study at a Surgical and a Gynecological Department offering complex cancer surgery and follow-up for advanced cancer. The e-PRO screened for a priori defined clinical important symptoms and needs providing individualized follow-up. We included following questionnaires in the e-PRO; the general European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and the EORTC validated for colorectal and ovarian cancer patients. To support individualization, we included three prioritized issues of the patient’s preference in each e-PRO. The response-algorithm was aggregated based on the severity of the patient’s response. To ensure the sensitivity of the e-PRO, we performed semi-structured interviews with five patients. All clinicians (surgeons and gynecologists) performing the consultations reviewed the e-PRO. The evaluation was divided in two, 1)The feasibility was assessed by a)Patients’ response rate of the e-PRO, b)Number of follow-up visits documenting the use of e-PRO and c)Patients’ prioritized issues prior to the consultation(‘yes’ / ‘no’), and after the follow-up 2)Patients assessment of a)The need and purpose of the follow-up visit and b)the support provided during the follow-up visit. RESULTS In total, 187 patients were included in the study, of which 73%(n=136/187) patients responded to the e-PRO and were subjected to an individualized follow-up. The e-PRO was documented as applied in 79% of the follow-up visits. In total, 23% of the prioritized issues did not include a response. Stratified by time since surgery, significantly more patients did not fill out a prioritized issue had a follow-up >6 months since surgery. In total, 72 % follow-up visits were evaluated to be necessary in order to discuss the outcome of the CT scan, symptoms, and/or prioritized issues. Contrary, 19% of the follow-up visits were evaluated to be necessary only to discuss the result of the CT scan. A range from 19.3–56.3% of patients assessed the follow-up visit to provide support with respect to physical (42% of patients), mental (56%), sexual (19%) or dietary (27%) issues. Further, a range from 34–60% of the patients reported that they did not need support regarding physical (43% of patients), mental (34%), sexual (63%) or dietary (57%) issues. CONCLUSIONS An individualized follow-up based on e-PRO is feasible, and support most patients surgically treated for advanced cancer. However, results indicate that follow-up based on e-PRO may not be beneficial for all patients and circumstances. A thorough cost-benefit analysis may be warranted before implementation in routine clinic.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

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