Facing Muscular Dystrophy During Covid-19 Pandemic: The Role of Support Associations and Spirituality.

Several researches in scientific literature analyze the theme of Muscular Dystrophy (MD), As well as many others focus on the theme of the Covid-19 pandemic; however, there is a rather limited number of studies that analyse how the pandemic has affected the life of people suffering from MD, especially during the time of the first lockdown in the spring of 2020. The present study has applied a qualitative research design with the aim to investigate how patients with MD have lived the social restrictions imposed for the contagion containment and whether the assistance of associations for their support has contributed to make the participants feel closer or more distant from the spiritual dimension. The analysis involved 12 participants, and they were presented with a semi-structured interview. The data obtained from the interviews have been analysed through a thematic analysis from which 4 thematic areas have emerged: (1) the impact of the pandemic on an emotional level; (2) the illness management and the role of family; (3) the role of the associations; (4) aspects related to spirituality. The crucial role that the closeness of family and the activities promoted remotely by the associations for patients' support has emerged, since they have allowed the participants to feel united by something beyond, to discover new aspects of themselves, to give more value to Life and to move closer to their spiritual dimension.

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

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.

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.

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.

Strengths and Weaknesses of Children Witnessing Relatives with Amyotrophic Lateral Sclerosis.

Research on minors who have a close family member with amyotrophic lateral sclerosis (ALS) is scarce. This study aims to analyze the relationships between reflective function and wellbeing among such children, considering their reflective function, representations of death, and behavioral problems with the following instruments: Reflective Functioning Questionnaire, Testoni Death Representation Scale for Children, Positive and Negative Affect Schedule for Children, and Strengths and Difficulties Questionnaire. Participants were 248 minors divided into the target group (38 children-16 females, 22 males-7-18 years old (M = 11.61, SD = 2.97)) and the control group (210 students-120 females, 90 males 9-14 years old (M = 11.17, SD = 1.33)). Results showed that the target group exhibited more negative affect and hyperactivity. However, they also showed less uncertainty in their mental states. The opportunity to support these minors is discussed.

Exploring Emotions Related to the COVID-19 Pandemic through Death Education: A Qualitative Study at Italian Primary Schools.

BACKGROUND: The COVID-19 pandemic has impacted the lives of individuals, families, and children worldwide. In Italy, the implementation of measures such as lockdowns and distance learning in schools affected the mental health of children and families. METHODS: This article employs a qualitative method to explore the efficacy of a death education project that aimed to help primary school children process the emotions and losses that they experienced during the COVID-19 pandemic. The study encompassed both the children who took part in the death education project and their teachers and parents to investigate their perspectives on the emotions of the minors and the effectiveness of the project. RESULTS: Distance learning posed challenges for the learning process and exacerbated social inequalities. The children suffered from limited social contact with their friends and experienced negative emotions, including anger, fear, and concern for the health of their loved ones. The death education project provided a safe space for children's emotional expression and facilitated their acquisition of coping strategies. Open communication between adults and children about illness and death proved effective in mitigating the psychological impacts of loss and preventing traumatic bereavement. CONCLUSION: The findings highlight the utility of death education in enhancing children's ability to express their emotions and approach the topic of death more frankly.

"Imagine You Have ALS": Death Education to Prepare for Advance Treatment Directives.

The study presents the results of qualitative research carried out within a death education project dedicated to advance treatment directives (ATDs) in which it was proposed to participants to empathize with people who had received a diagnosis of Amyotrophic Lateral Sclerosis (ALS). The study involved 104 people who discussed and reflected on issues related to the knowledge of having to die, palliative care and ATDs, investigating what choices they would have made if they had received such a diagnosis. Finally, they were asked to write a paper describing their impressions and hypothetical choices. Qualitative analysis has elucidated among fundamental themes. Four thematic areas emerged from the data analysis: (1) ATDs and the family; (2) the importance of reducing pain and suffering; (3) emotions and considerations regarding death, illness and spirituality; and (4) opinions on the DeEd course. It has emerged that some people are unfamiliar with palliative care or the right to self-determination and that addressing these issues helps manage the thought of the future with less terror. The experience of death education has therefore proven to be very positive in dealing with complex and often censored issues, allowing thinking about death in a less distressing way.

The experience of children with a parent suffering from Amyotrophic Lateral Sclerosis during the COVID-19 pandemic.

Children that have a parent with Amyotrophic Lateral Sclerosis (ALS) suffer from the progressive loss of their beloved ones. During the COVID-19 pandemic, the difficulties faced by these children have increased. The study aimed to detect whether there were differences between the minors experiencing a relative's ALS and the minors with no experience of ALS and it aimed also to detect the impact of COVID-19 pandemic on these minors. The study involved Italian participants, in particular: the target group consisted of 38 children (7-18 years) (T0/T1); the control group consisted of 38 children (9-14 years) (T0 only). The following variables were measured: attachment with the Security Scale (SS), affects with the Positive and Negative Affect Schedule for Children (PANAS-C), behavioural problems with Strengths and Difficulties Questionnaire (SDQ), death representation with Testoni Death Representation Scale for Children (TDRS-C), self-concept with the Multidimensional Self Concept Scale (MSCS), resilience and socio-emotional skills with the Devereux Student Strengths Assessment (DESSA). The results showed higher negative affectivity (p < .001), externalising behaviours (p < .05), uncertainty in reflective function (p < .05) in the target group compared to the control one; after the COVID-19 pandemic minors in the target group showed reduced certainty of mental states (p < .05) and interpersonal and scholastic self-esteem (p < .05). The impact of ALS on these minors is significant and produces negative affect, externalizing behaviours and uncertainty of mental states. The lockdown situation due to the COVID-19 pandemic has further aggravated minors in their school and interpersonal self-esteem.

Death Notification in Italian Critical Care Unites and Emergency Services. A Qualitative Study with Physicians, Nurses and Relatives.

This qualitative study was conducted in critical care units and emergency services and was aimed at considering the death notification (DN) phenomenology among physicians (notifiers), patient relatives (receivers) and those who work between them (nurses). Through the qualitative method, a systemic perspective was adopted to recognise three different categories of representation: 23 clinicians, 13 nurses and 11 family members of COVID-19 victims were interviewed, totalling 47 people from all over Italy (25 females, mean age: 46,36; SD: 10,26). With respect to notifiers, the following themes emerged: the changes in the relational dimension, protective factors and difficulties related to DN. With respect to receivers, the hospital was perceived as a prison, bereavement between DN, lost rituals and continuing bonds. Among nurses, changes in the relational dimension, protective factors and the impact of the death. Some common issues between physicians and nurses were relational difficulties in managing distancing and empathy and the support of relatives and colleagues. The perspective of receivers showed suffering related to loss and health care professionals' inefficacy in communication. Specifically, everyone considered DNs mismanaged because of the COVID-19 emergency. Some considerations inherent in death education for DN management among health professionals were presented.

Enhancing Existential Thinking through Death Education: A Qualitative Study among High School Students.

The censorship of death-related issues is widespread in contemporary Western culture because the boundary between death and life is substantially managed in medical areas. In the context of Italian educational initiatives, to remove this limitation, 215 high school students in Southern Italy were educated on death through conventional and informal lessons. The students answered a questionnaire with open questions to survey their emotional and reflective experiences. Their answers were qualitatively, thematically analysed to explore how the representation of death can follow a death education course, and if this experience can be managed without harmful effects. The students' answers narrated how the course reduced their anxiety linked to these themes, on the one hand improving communication between peers by making it more authentic and empathic and, on the other, providing alternative perspectives on life. Indeed, the project offered an opportunity to discuss something strongly heartfelt but rarely faced, and the survey confirmed that the research objectives were fully achieved.

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

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.

The Endless Grief in Waiting: A Qualitative Study of the Relationship between Ambiguous Loss and Anticipatory Mourning amongst the Relatives of Missing Persons in Italy.

This article presents the results of a qualitative study aiming to consider the relationship between ambiguous loss and anticipatory mourning amongst relatives of missing people in Italy. Eight people participated in the research, narrating their experiences of losing a beloved person (one found alive, three found dead, and four still missing). Findings suggest the presence of a particular form of ambiguous loss, characterised by traits typical of both prolonged and traumatic grief. These findings describe how families are faced with an emotional vortex related to a never-ending wait, and how the mourning is solved only when the missing person is found dead or alive. The discovery of a corpse is traumatic but it allows mourners to fully recognise their grief. When a person is found, it changes the relationship in a positive way. When neither of these events happen, mourners have two different kinds of reactions: they experience either a prolonged grief or a drive to solve their suffering by helping other people (post-traumatic growth). In this study, it is highlighted how a community can be useful or detrimental in this process, and the importance of psychological and social support to prevent significant clinical outcomes is stressed.

Psychodrama and Moviemaking in a Death Education Course to Work Through a Case of Suicide Among High School Students in Italy.

This study describes the psychological effects of an experience of death education (DE) used to explore a case of suicide in an Italian high school. DE activities included philosophical and religious perspectives of the relationships between death and the meaning of life, a visit to a local hospice, and psychodrama activities, which culminated in the production of short movies. The intervention involved 268 high school students (138 in the experimental group). Pre-test and post-test measures assessed ontological representations of death, death anxiety, alexithymia, and meaning in life. Results confirmed that, in the experimental group, death anxiety was significantly reduced as much as the representation of death as annihilation and alexithymia, while a sense of spirituality and the meaning of life were more enhanced, compared to the No DE group. These improvements in the positive meaning of life and the reduction of anxiety confirmed that it is possible to manage trauma and grief at school with death education interventions that include religious discussion, psychodrama and movie making activities.