Tullio Proserpio

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.

System of belief inventory (SBI-15R): a validation study in Italian cancer patients on oncological, rehabilitation, psychological and supportive care settings.

Aims and background Spiritual and religious needs are part of a patients clinical history. The aim of the study was to validate the System of Belief Inventory (SBI-15R) in Italy. It is a feasible way to collect useful information on spiritual needs and resources of patients at any stage of the disease. Methods After the translation procedure, the psychometric properties of the Italian version of SBI-15R were evaluated in patients with non-advanced cancer cared for in four care settings. All patients were administered the Italian version of SBI-15R together with an hoc item inquiring about spirituality — “I believe I am a spiritual person”, which was supposed to be correlated with the SBI-15R score. Results A total of 257 patients were enrolled (mean age, 53.6 years; 191 females, 50% breast cancers, 12% had mestastases). As regards spirituality and religious beliefs, 47.9% were churchgoers; 42% believers but not churchgoers, and 7.8% non-believers; 86.7% of the patients were catholic. The construct validity was high both for the Belief Scale (Cronbach alpha = 0.946) and for the Support Scale (Cronbach alpha = 0.897). The mean (± SD) SBI-15R scores of the different groups of patients (known-groups validity) for the “Support” scale was 9.7 (± 3.4) for churchgoers, 4.9 (± 3.2) for believers non-churchgoers, and 0.8 (± 1.4) for non-believers (P <0.0001, F test). For the “beliefs” scale, it was 25.4 (± 4.8) for churchgoers, 18.1 (± 6.3) for believers non-churchgoers, and 3.4 (± 3.5) for non-believers (P <0.0001, F test). Regarding the test-retest reliability (n = 68), Lins concordance correlation for the “Support” scale was 0.890 (0.841; 0.939 95% CI) and for the “Belief” scale was 0.969 (0.955; 0.984 95% CI). The correlation between the statement” I believe I am a spiritual person” and the SBI-15R scores was 0.475 for the “Support” scale and 0.473 for the “Belief” scale.” Conclusions The Italian version of SBI-15R is a valid and reliable assessment tool to evaluate religiousness and spirituality in cancer patients. Free full text available at www.tumorionline.it

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

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.

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.

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 counselors 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.

New strategies to ensure good patient–physician communication when treating adolescents and young adults with cancer: the proposed model of the Milan Youth Project

Adolescence is a particularly complex time of life, entailing physiological, psycho- logical, and social changes that further the individuals cognitive, emotional, and social growth. Being diagnosed with cancer at this time can have important consequences on an individuals emotional and physical development, and adolescent and young adult cancer patients have par- ticular medical and psychosocial needs. Patient-physician communications are important in any clinical relationship, but fundamental in the oncological sphere because their quality can affect the patient-physician relationship, the therapeutic alliance, and patient compliance. A major challenge when dealing with adolescent and young adult patients lies in striking the right bal- ance between their need and right to understand their disease, treatment, and prognosis, and the need for them to remain hopeful and to protect their emotional sensitivity. We herein describe the activities of the Youth Project of the Istituto Nazionale Tumori in Milan, Italy in order to share a possible model of interaction with these special patients and the tactics our group has identified to help them communicate and share their thoughts. This model implies not only the involvement of a multidisciplinary team, including psychologists and spirituality experts, but also the constitution of dedicated creative activities to give patients the opportunity to express feelings they would otherwise never feel at ease putting into words. These efforts seek the goal to minimize the potentially traumatic impact of disease on the patients psychological well-being. Our group focused also on communication using modern media as vehicles of information, eg, integrating the use of social networks in the involvement of patients in adolescent- and young adult-dedicated activities and uploading informative videos on YouTube.

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.

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.

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.

“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.