Adolescents with Terminal Cancer: Making Good Use of Illusions.

The terminal stage of disease in teenagers is extremely complex to manage. In this study, we share some stories of terminally ill adolescent patients who made use of illusion as a way to overcome their anguish in their final stages of illness. These experiences show how young patients can cope better with terminal illness by resorting to a nonrational and fictional dimension that can serve them as a psychological compromise, helping them tolerate their real everyday life by suspending their critical senses for a while. Illusions can serve as a resource for young patients and a potentially useful tool for medical professionals.

Spirituality and Sustaining Hope in Adolescents with Cancer: The Patients' View.

Purpose: The trauma of the diagnosis of cancer during adolescence may affect the young people's spiritual sphere. Projects aiming to the global care of adolescents with cancer should consider also their spiritual needs: at our center, the dedicated multidisciplinary team of professionals includes a chaplain with a specific training. This article describes, throughout the patients' dialogs, how a chaplain can help patients to give voice to their emotions and thoughts about their sense of life and illness. Methods: From January 2016 to December 2017, 33 adolescent patients with solid tumors had from 2 to 12 one-to-one talks with the chaplain. We selected six specific clinical cases in which some important topics were discussed between the chaplain and the patients. Results: Patients' own voices were reported to describe some specific spiritual issues, particularly as regards how spirituality could sustain them in their need to continue to hope. Examples of specific questions during talks were as follows: "Why doesn't God do something?"; "What is the point of all this pain?"; "Why have I become ill? Why me?"; "What do you think will happen to me after I die?" Conclusions: This experience underlines the importance of the inclusion of the spiritual assistant within the multidisciplinary team dedicated to young people with cancer. The daily and constantly available presence of the chaplain in the ward, from the beginning of any treatment, can permit a good relationship with patients and help them to keep hope and move forward.

Loop: there's no going back: A Graphic Novel by Adolescent Cancer Patients on the Youth Project in Milan.

The present paper describes the story of the development of a graphic novel-a story about superheroes-written by adolescent cancer patients on the Youth Project at the Istituto Nazionale Tumori in Milan (Italy). Nineteen patients from fifteen to twenty-five years old (fifteen receiving treatment for their cancer, four who had recently completed their treatments) participated in a four month creative writing laboratory managed by a professional teacher. The output from the writing laboratory was a written text that was used as the script for a graphic novel drawn by professional cartoonists and working together with the patients. Through their story, adolescent patients succeeded in voicing their dreams and fears. It was the adolescent patients themselves who explained how they had each tried to bring out the superhero inside them. This project describes the amazing powers of adolescents with cancer and opens a precious window on their inner world, enabling us to gain a better understanding of what they are really thinking and feeling through their own words.

"What shall I do when I grow up?" Adolescents with cancer on the Youth Project in Milan play with their imagination and photography.

INTRODUCTION: Adolescents diagnosed with cancer have to temporarily stop pursuing several vital needs and making plans for the future. The Youth Project in Milan, Italy, focuses on such issues in young cancer patients' personal lives. Uncertainty about the future had already emerged in several artistic projects designed to help these patients voice their emotions. METHODS: We describe a project revolving around the question "What shall I do when I grow up?" Twenty-seven 15- to 26-year-old patients wrote a brief account of what they hoped to do as adults. Using theatrical costumes, they then dressed up in their chosen role for a photo shoot with a well-known professional photographer. The results were published in one of Italy's main national dailies. RESULTS: Participants reacted differently: some lightheartedly, others more seriously. They often expressed the wish to help others, desiring to return the support and protection they had received as patients. Another common theme concerned their need for normality. CONCLUSIONS: By writing about their dreams, these patients gave their doctors a glimpse of their inner world. The project proved an important complement to more conventional forms of psychosocial support and interaction with young patients.

[About the good use of illusions in oncology. End-of-life experiences and communications in adolescent patients.] / Sul buon uso delle illusioni in oncologia. Esperienze e comunicazioni di fine vita in pazienti adolescenti.

The issue of quality of life, particularly of patients affected by cancer, is very controversial, especially with adolescent patients who have no prospects of recovery. This article aims to describe the psychological mechanisms, which affect teenage patients with terminal cancer, in order to allow the best quality of life possible. The adaptation of teenager patients suffering from terminal illnesses is also related to other non-medical issues such as psychological, legal and ethical considerations. A correct and balanced communication with such patients is needed, in order of maintaining a positive mental approach ("hope") so that the teens are able to come to terms with the hard reality. Several case studies are presented, that according to the authors show the importance of developing an area of illusion, which allows patients to face up to the extreme distress and anxiety of their reality, without completely denying the reality itself. These hypotheses at the moment need more empirical evidences but they demonstrate the complex mental process involved with terminally ill adolescent patients coming to terms with their situations and show the importance of considering such process in all aspects of clinical care and treatment, in order to best address their physical and psychological well-being.

Cooperation between in-hospital psychological support and pastoral care providers: obstacles and opportunities for a modern approach.

The meaning that patients with cancer attribute to life influences their expectations and their attitudes to the disease and its treatment. Over the centuries, religion has commonly been the answer encoded by the social setting when it came to matters of life and death. The present article analyzes the historical grounds for forms of cooperation between the scientific disciplines that focus on mental health and the approach of religion, centered on the Italian situation. Such cooperation was hard to imagine in the past, but the situation has changed considerably and cooperation is not only possible but extremely desirable. Acknowledgment of their spiritual needs helps patients to battle with their disease. The care of patients should include catering for their spiritual needs by ensuring the constant presence of a chaplain on hospital wards.

Dreams and illusions in adolescents with terminal cancer.

Being diagnosed with cancer in adolescence generally has important emotional consequences: adolescent cancer patients need to be seen as special cases with particular medical and psychosocial needs. This is especially true when a young patient is faced with a progressive, incurable disease. Herein, we report the story of a 17-year-old girl with a metastatic refractory soft tissue sarcoma who tells her dream to the psychologist of the ward. Telling this narrative is the opportunity to discuss the complex topic of how adolescent cancer patients adapt to the terminal stage of their disease; for example, the patient needs to talk to someone about their fear of dying; the healthcare operators need to be able properly listen and communicate; the patient's trust in the future despite their clinical condition; the necessity to leave space for hope; the useful role of the imagination sphere; the issue of whether and how to tell a person who is terminally ill the truth about their condition.

Measuring the efficacy of a project for adolescents and young adults with cancer: A study from the Milan Youth Project.

BACKGROUND: Various projects dedicated specifically to adolescents and young adults (AYA) with cancer have been developed in recent years. A critical aspect of such programs is the ability to demonstrate its value, and therefore how to measure desired outcomes. METHODS: A list of metrics to consider for demonstrating the advantages of an AYA program was identified and used to assess the activity of the Youth Project operating at the Pediatric Oncology Unit of the Istituto Nazionale Tumori in Milan. RESULTS: The number of newly diagnosed AYA patients seen at the Unit has increased since the formal launch of the Youth Project, from 65 to 81.2 cases/year. Concerning the 78 AYA patients presenting with malignant neoplasms in 2015, 82% were included in clinical trials (the other 18% in prospective observational studies). Fertility preservation measures were implemented for 59% of AYA patients considered at risk, and specific psychological support was provided in 70.6% of cases; 72.5% of patients actively participated in support activities. Other parameters considered were a preliminary satisfaction questionnaire administered to patients and the program's scientific recognition and acknowledgment by the community. CONCLUSIONS: The study proposed a number of potentially reproducible, practical parameters to consider in assessing the value of a program dedicated to AYA. These metrics were examined in terms of the activities of our Youth Project, and confirmed its efficacy. To be sustainable over time, AYA projects have to be accepted as a standard of care at the community and government levels.

Spiritual support for adolescent cancer patients: a survey of pediatric oncology centers in Italy and Spain.

INTRODUCTION: Spirituality is a fundamental aspect of the psychological well-being of adolescents with cancer. This study reports on a survey conducted at pediatric oncology centers in Italy and Spain to examine the situation concerning the provision of spiritual support. METHODS: An ad hoc questionnaire was distributed including multiple-choice questions on whether or not spiritual support was available; the spiritual counselor's role; how often the spiritual counselor visited the unit; and the type of training this person had received. RESULTS: A spiritual support service was available at 24 of the 26 responding centers in Italy and 34/36 in Spain. The training received by the spiritual counselor was exclusively theological in most cases (with medical or psychological training in a few cases). In both countries the spiritual counselor was mainly involved in providing religious services and support at the terminal stage of the disease or in talking with patients and families. Cooperation with caregivers was reported by 27.3% and 46.7% of the Italian and Spanish centers, respectively, while the daily presence of the chaplain on the ward was reported by 18.2% and 26.7%. CONCLUSIONS: The role of the spiritual counselor in pediatric oncology - in Italy and Spain at least - is still neither well-established nor based on standardized operating methods or training requirements. A model that implies the constant presence of a spiritual counselor in hospital wards may be proposed to provide appropriate spiritual support to adolescents with cancer.

Hope in cancer patients: the relational domain as a crucial factor.

AIMS AND BACKGROUND: Hope is crucial for patients with cancer. We explored the determinants of hope in patients with cancer using a questionnaire administered over the course of 1 day to an unselected sample of patients at an Italian cancer center. METHODS: A team of oncologists, statisticians, and chaplains developed a questionnaire with medical, psychological, spiritual, and religious content. A cross-sectional study was conducted on 320 patients who answered the questionnaire. RESULTS: In the group of participants, 92.8% had a religious belief. Women, patients with limited formal education, and believers were more hopeful. Patients placed trust in God, their partners and children, scientific research, and doctors. On univariate and multivariate analysis, hope was found sensitive to patients' sharing their experiences with others (including family and friends), their positive perception of the people around them, and their relationship with doctors and nurses. CONCLUSIONS: If validated in further studies, these results support the notion that a patient with cancer's sense of hope is sensitive to the quality of relationships with caregivers. This may be important to health care organization and resource allocation.

Creating beauty: the experience of a fashion collection prepared by adolescent patients at a pediatric oncology unit.

AIMS AND BACKGROUND: Adolescent patients with cancer need psychological support in order to face the traumatic event of cancer diagnosis and to preserve continuity with their normal lives. Creative projects or laboratories may help young patients express their thoughts and feelings. METHODS: The Youth Project developed activities dedicated to adolescents to give them a chance to vent their creative spirit and express themselves freely. In the first project, the teenagers designed their own fashion collection in all its various stages under the artistic direction of a well-known fashion designer, creating their own brand name (B.Live), and organized a fashion show. RESULTS: In all, 24 patients from 15 to 20 years old took part in the project. The fashion project proved a fundamental resource in helping the young patients involved to regain a positive self-image and the feeling that they could take action, both on themselves and in their relations with others. CONCLUSIONS: Facilitating the experience of beauty may enable hope to withstand the anguish caused by disease. This experience integrated the usual forms of psychological support to offer patients a form of expression and support during the course of their treatment.

Hope in severe disease: a review of the literature on the construct and the tools for assessing hope in the psycho-oncologic setting.

AIMS AND BACKGROUND: Research on the topic of hope began a long time ago but, more recently, interest in this construct has focused mainly on the development of psychometric tools for its assessment. The 2 steps of the present article are defining the construct of hope by completing a preliminary review of the literature and analyzing the tools used to assess hope in the setting of oncologic medicine, conducting a systematic review of the existing scientific literature. METHODS AND STUDY DESIGN: Our study was conducted in 2 stages. The first stage involved a nonsystematic preliminary review of the literature, the second a systematic search in all the medical journals contained in the Medline database as of 2012. The literature identified at the first stage was divided according to several topical categories, i.e., theoretical, empirical, and clinical works on the construct of hope. In the second systematic search, we identified the main psychometric tools used to measure hope in the field of clinical oncology and assessed their validity. RESULTS: A total of 22 articles were identified. What emerged when we pooled the findings of our 2 lines of research was that, despite its broad theoretical definitions, the construct of hope can be broken down to a few constituent elements when hope is studied using currently available psychometric tools. In particular, these identified constituent elements were coping, spiritual well-being, quality of life, distress, and depression. CONCLUSIONS: The factors contained in the construct of hope include temporality, future, expectancy, motivation, and interconnectedness. The review of the scientific literature does not reveal a clear definition of hope. Multidisciplinary studies are needed to communicate different perspectives (medical, psychological, spiritual, theological) among each other for better definition of the constituent elements of hope in order to support the hope with specific interventions.

When a foreign adolescent orphan refuses to be treated: Considerations on a clinical case.

Providing medical treatment for unaccompanied foreign minors can prove particularly demanding when a patient is not fully compliant. This report describes the case of a 13-year-old boy from Sub-Saharan Africa brought to Italy to receive treatment for a neoplasm. Right from the start, he showed strong oppositional reactions, with aggressive and self-harming behavior. This made it necessary to activate various different psychological, psychiatric, and social-support resources, and to adapt the proposed treatments to the patient's willingness and ability to cooperate. Here we outline the assessments and actions (also from the economic and organizational standpoint) that need to be implemented in any scheme to bring young foreign orphans to Italy for specialist medical care.

Spiritual aspects of care for adolescents with cancer.

AIMS AND BACKGROUND: Adolescents with cancer have psychosocial issues that need to be adequately addressed. Spirituality is a fundamental aspect of their psychological well-being. METHODS: A chaplain is a daily presence in the Youth Project ward for adolescents at the Pediatric Oncology Unit of the Istituto Nazionale Tumori, Milan. The chaplain conducts daily visits to the ward and the outpatient clinic/day hospital, holds daily meetings with the psychologists on staff, and attends biweekly meetings with doctors and/or nurses. The cases of patients referred for spiritual assistance between January and December 2012 were analyzed by patient age and reasons for consultation, and were compared with cases referred for psychological consultation. RESULTS: A psychological consultation was offered to 84% of patients/families, and further support was needed for 23% of children and 45% of teenagers. Spiritual support was provided for 2 children and 20 adolescents (24% of the sample considered). CONCLUSIONS: Acknowledgment of their spiritual needs helps patients to battle with their disease. The reasons patients and parents ask for spiritual assistance only partially overlap with the motives behind requests to see a psychologist. The care of adolescents with cancer should include catering for their spiritual needs by assuring the constant presence of a chaplain on hospital wards.

[Support to spiritual needs in hospital care. Integration perspective in modern hospitals]. / Il supporto ai bisogni spirituali nella cura ospedaliera. Prospettive di integrazione nell'ospedale moderno.

Within the course of medical care in the most advanced health care settings, an increasing attention is being paid to the so-called care humanization. According to this perspective, we try to integrate the usual care pathways with aspects related to the spiritual and religious dimension of all people and their families, as well as the employees themselves. It is clearly important to establish this kind of practices on the basis of scientific evidences. That is the reason why it's a necessity to improve the knowledge about the importance that spiritual assistance can offer within the current health service. The aim of this work is to show the relevance of the integration of spiritual perspectives in the hospital setting according to a multidisciplinary point of view. In this work many data that emerge from the international scientific literature, as well as the definition that is given to the concept of "spirituality" are analyzed; about this definition in fact there is not unanimous consent even today. It is also analyzed the legal situation in force within the European territory according to the different laws and social realities. Finally, the possible organizational practices related to spiritual support are described and the opportunity to specific accreditation pathways and careful training of chaplains able to integrate traditional religious practices with modern spiritual perspectives is discussed.

Is the spiritual life of cancer patients a resource to be taken into account by professional caregivers from the time of diagnosis?

BACKGROUND AND AIM: Spiritual life can be defined as the search for personal contact with the transcendent. Careful assessment of spiritual life can help to value its importance to cancer patients from the moment of their diagnosis. METHODS: This is a cross-sectional study. Two hundred fifty-seven patients undergoing cancer treatment filled in the validated Italian version of the Systems of Belief Inventory (SBI-15R). Patients were also asked to attribute themselves to one of the following, mutually exclusive categories: believer and churchgoer, believer but no churchgoer, and non-believer. RESULTS: Five patients did not report their religious stance and were therefore excluded from the analysis. Of the remaining 252 patients, 49% declared to be believers and churchgoers, 43% believers but not churchgoers, and 8% non-believers. Of the 20 cancer patients who declared not to have a religious faith, 7 patients agreed with the statement that they felt certain that God exists in some form, and 4 had experienced peace of mind through prayer and meditation. Almost all of the patients who declared to have a religious faith and to be churchgoers explicitly affirmed to have been helped by prayer and meditation in coping with their illness. Among believer churchgoers, only 30% declared to seek out the religious or spiritual community when they needed help. CONCLUSIONS: A large proportion of cancer patients find themselves involved with the search for a personal contact with the transcendent, also beyond any specific religious affiliation. These spiritual issues may be important even when they are not expressed as participation in religious rituals or adherence to specific religious beliefs. On the other hand, participation in religious rituals often implies the need for a personal spiritual life, both through those rituals and beyond them, as through personal prayer and meditation. These results ask for more attention on the part of professionals towards spiritual resources among cancer patients. It might be appropriate to look systematically for these resources from the moment of the diagnosis, through the sensitive administration of an easy and valid assessment tool like the SBI-15R.