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

Abstract

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.

Tumori 2016; 102(4): 376 - 380

Article Type: ORIGINAL RESEARCH ARTICLE

DOI:10.5301/tj.5000494

Authors

Tullio Proserpio, Laura Veneroni, Matteo Silva, Alvaro Lassaletta, Rosalia Lorenzo, Chiara Magni, Marina Bertolotti, Elena Barisone, Maurizio Mascarin, Momcilo Jankovic, Paolo D’Angelo, Carlo A. Clerici, Carmen Garrido-Colino, Ignacio Gutierrez-Carrasco, Aizpea Echebarria, Andrea Biondi, Maura Massimino, Fiorina Casale, Angela Tamburini, Andrea Ferrari

Article History

Disclosures

Financial support: None.
Conflict of interest: The authors have no conflict of interest related to this study.

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Introduction

Cancer is a disease that obliges those affected to come to terms with the experience of limitation and death. The need to find a meaning for the suffering it causes is one of a number of patients’ needs that has been increasingly acknowledged as fundamentally important by the medical community (1). This applies even more when the patients concerned are adolescents, because this age group has very particular needs related to the period of life they are experiencing (2, 3). During adolescence, a person’s body changes, and so does their way of thinking. Adolescent cancer patients need to preserve a continuity of their life story even while they are coping with a disease and its treatment that entail bodily changes (4, 5). Having to come to terms with such a severe disease at this tender age forces them to wonder precociously about the sense of life: “Who am I? Where am I going? Why is this happening to me?”(6).

Alongside the psychological and social aspects involved, various publications have shown that spirituality is also an aspect of interest to adolescents suffering from cancer (6, 7). A previously published article describes a model of spiritual support that underscores the importance of the daily presence of a chaplain on the hospital ward (7). The model stemmed from experience gained at a pediatric oncology center in northern Italy, and thus represents a particular local situation. To examine the situation concerning the provision of spiritual support at other pediatric oncology centers and assess whether this model should be adopted elsewhere in Italy and other countries with a similar culture, the Italian Society for Adolescents with Oncological and Hematological Diseases (SIAMO; Società Italiana Adolescenti con Malattie Onco-ematologiche) (8) conducted a survey of the centers affiliated with the Italian pediatric oncology network (AIEOP; Associazione Italiana di Ematologia e Oncologia Pediatrica) and with the Spanish Society of Pediatric Hemato-Oncology.

Material and methods

The study was conducted by distributing an ad hoc questionnaire in Italian and Spanish developed by a multidisciplinary team comprising oncologists, psychologists and a spiritual counselor. The questionnaire included questions on whether or not spiritual support was available at the hospital, and if and how the service was provided at the pediatric oncology department. The questions were few in number and very straightforward, with multiple-choice answers. They concerned the spiritual counselor’s role; how often the spiritual counselor visited the pediatric oncology department; and the type of training this person had received. Centers that reported not currently providing this service were asked to judge whether they would recommend its introduction (Fig. 1). The questionnaire was sent by email to the directors of all pediatric oncology centers in Spain and Italy together with an explanatory letter. It was completed in electronic format and returned by email. The data were collected in a dedicated database and analyzed using descriptive statistics.

Structure of the questionnaire.

Results

The questionnaire was distributed to 51 centers in Italy and 38 in Spain. It was returned by 26/51 Italian centers (50.9%) and 36/38 Spanish centers (95%). Table I summarizes the answers obtained.

Answers to questionnaire distributed to Italian and Spanish pediatric oncology centers

Italy Spain
* 1 training in physical therapy, 2 unspecified.
** Logistic reasons.
Are there any spiritual counselors available at your hospital? Yes 24/26 Yes 34/36
If so,
What type of training do they have?
theological 19 79.2% 31 86.1%
psychological 2 8.3% 1 2.8%
medical 1 4.2% 1 2.8%
other* 2 8.3% 1 2.8%
Does the spiritual counselor cooperate with your pediatric oncology department? Yes 22/24 Yes 15/34
What type of services does the spiritual counselor provide?
talks with adolescent patients 15 68.2% 9 60%
talks with families 20 90.1% 11 73.3%
spiritual support for health care operators 5 22.8% 3 20%
assessing spiritual needs of patients and families 4 18.2% 6 40%
religious activities (rites, sacraments) on request 18 81.2% 14 93.3%
spiritual support for the terminally ill 17 77.3% 12 80%
spiritual support for families coping with bereavement, by means of individual meetings 5 22.8% 4 26.7%
counseling to help find a meaning for the disease 1 4.5% 3 20%
cooperation with the psychologist 3 13.6% 3 20%
cooperation with the social worker 2 9% 1 6.7%
cooperation with the medical personnel on the handling of special cases 6 27.3% 7 46.7%
organization of religious activities (e.g., pilgrimages) 5 22.8% 3 20%
supervision, teaching and continuing education 1 4.5% 2 13.3%
scientific and cultural research into spiritual issues 1 4.5% 1 6.7%
How often does a spiritual counselor visit the department?
on request 5 22.8 8 53.3%
periodically 13 59.1% 3 20%
daily 4 18.2% 4 26.7%
If not,
Even if there is none now, has there been any cooperation with a spiritual counselor in the past? Yes 1 (50%) Yes 4 (21.1%)
If so, why was it suspended?
the person concerned moved away and was not replaced 0 4
other** 1 0
Do you think a spiritual counselor would be useful? Yes 2/2 Yes 18/19
In which situations do you think a spiritual counselor might be useful?
talks with patients 22 84.6% 25 69.4%
talks with adolescent patients 13 50% 28 77.8%
talks with families 24 92.3% 32 88.9%
spiritual support for health care operators 21 80.8% 17 47.2%
assessing spiritual needs of patients and families 21 80.8% 25 69.4%
religious activities (rites, sacraments) on request 16 61.5% 24 66.7%
spiritual support for coping with bereavement, by means of individual meetings 19 73.1% 25 69.4%
counseling to help find a meaning for the disease 9 34.6% 12 33.3%
cooperation with the psychologist 12 46.2% 19 52.8%
cooperation with the social worker 5 19.2% 14 38.9%
cooperation with the medical personnel on the handling of special cases 14 53.8% 18 50%
organization of religious activities (e.g., pilgrimages) 10 38.5% 12 33.3%
supervision, teaching and continuing education 5 19.2% 6 16.7%
scientific and cultural research into spiritual issues 3 11.5% 10 27.8%

A spiritual support service was available at 24/26 centers in Italy (92.3%) and at 34/36 of those in Spain (94.4%). In the majority of cases, the type of training the spiritual counselor had received was exclusively theological, both in Italy (79.2%) and Spain (86.1%). Medical or psychological training was reported in only a few cases. When a spiritual support service was available, it cooperated with the pediatric oncology department in most of the Italian centers (91.4%) but in less than half of the Spanish ones (44.1%).

As for the spiritual counselor’s role, this most commonly involved providing religious services in the 2 countries investigated, such as celebrating rites and administering the sacraments (81.2% in Italy, 93.3% in Spain), providing spiritual support in the terminal phase of the disease (77.3% and 80%, respectively), talking with patients’ families (90.1% and 73.3%), and talking with adolescent patients (68.2% and 60%). Cooperation with medical and nursing personnel was reported in 27.3% of the centers in Italy and 46.7% of those in Spain. Cooperation with the psychologist or social worker was rare (in 3 and 2 centers, respectively, in Italy, and in 3 and 1 centers in Spain). The spiritual counselor was involved in scientific research activities at only 1 center in Spain and 1 in Italy.

At the centers where the chaplains worked with the pediatric oncology departments, they visited the wards mainly on request in Spain (53.3%), whereas they did so routinely in Italy (59.1%). The daily presence of the chaplain was reported at 18.2% and 26.7% of centers in Italy and Spain, respectively. There were also reports of departments where the spiritual counselor had previously been a regular presence but the service had subsequently been suspended, often for logistic reasons.

The reference figures answering our questionnaire at the centers where the hospital’s spiritual counselor did not cooperate with the pediatric oncology staff felt that it would be useful to implement this activity.

As for the possibility of broadening the spiritual counselor’s role beyond the functions already provided by the service, respondents felt that it would also be important to provide support to health care operators (80.8% in Italy) and to families dealing with bereavement (73.1% in Italy and 69.4% in Spain). The opportunity for the spiritual counselor to cooperate with the medical personnel and the psychologist was also judged important.

Discussion

When cancer affects adolescents, attention to the topic of spirituality is now considered part of a model of care that focuses on the whole life of these young people, not only on their disease. Starting with the experience gained with the Youth Project at the Istituto Nazionale dei Tumori of Milan (9-10-11), where a chaplain works at the pediatric oncology department on a daily basis, together with the medical team and in close cooperation with the psychologist (6), SIAMO conducted a survey on the role of the spiritual counselor at other Italian and Spanish pediatric oncology centers. The questionnaire was answered by the majority of the Spanish centers but only half of the Italian centers (despite several reminders); the reason for the latter’s poor adherence to the survey is not known, and it is impossible to say whether it is indicative of scarce interest in the topic. This represents a potential bias of the present study because it may be that the centers that did answer our questionnaire were the ones that considered spiritual counseling an important issue.

The first point of interest emerging from our survey concerns the type of training that spiritual counselors receive: in both Italy and Spain, they are generally Catholic priests who have only received a theological education. It was only in a handful of cases that they had reportedly received specific psychological or medical training. A modern view of the spiritual counselor demands a specific course of training designed to make the chaplain a specialist in the spiritual care of patients. In Europe, for instance, “Standards for Health Care Chaplaincy” have been developed that require training of a psychological and medical nature (12). In the United States, to be acknowledged as a spiritual counselor by the Association of Professional Chaplains, a chaplain must complete a course of training that includes not only attending a theological college and university faculty, but also 1 or 2 years of training in clinical pastoral care (which entails more than 1,600 hours’ work under supervision in providing spiritual support for the sick), plus a year of practical training in a hospital (13).

Alongside the specific training for chaplains, it is also essential to ensure that medical personnel are adequately trained to recognize the spiritual needs of their patients, and are aware of how valuable the cooperation with chaplains can be. This should be considered even more important for doctors who work with adolescents suffering from cancer. In fact, while the results of our survey demonstrate that spiritual counselors are available at most hospitals, they also show that these chaplains cooperate with their hospital’s pediatric oncology departments at most Italian centers but less than half of those in Spain. The reasons for this diversity are not known.

At the centers where chaplains do cooperate with the pediatric oncology department, this happens mainly on request at the Spanish centers, while the chaplains routinely visit the department (at least 2 or 3 times a week) at the majority of the Italian centers. The daily presence of the spiritual counselor at the department was reported in 18.2% of the centers in Italy and in 26.7% of those in Spain.

As for the chaplain’s role, however, it emerges from our study that it mainly involves providing religious services (rites and sacraments) and spiritual support for patients in the terminal phase of their disease. Although in a considerable percentage of cases the chaplains reportedly talk with patients and/or families, their direct cooperation with medical and psychological personnel is still very limited in both Italy and Spain. There may be several possible reasons for this (14, 15). For instance, there may still be some element of prejudice relatied to the traditional role of hospital chaplains, which was historically to provide spiritual support to patients who were dying. Another reason may stem from a conviction on the part of the medical personnel that chaplains are not specifically trained to deal with people who are very ill and work in a very difficult environment. This may still be true in cases where, as mentioned earlier, the chaplains’ training is still exclusively theological. In addition, the physicians themselves may not have been adequately trained to realize the value of spiritual support for their patients. Our survey suggests, however, that this situation may be changing: respondents at the centers where the spiritual counselors did not collaborate with the pediatric oncology team felt that this activity would be useful. When asked which aspects of spiritual support were important, about 1 in 2 centers judged it important to provide opportunities for the chaplain to work with the medical personnel and the psychologist, i.e., such cooperation is seen as a factor that could improve the status quo. Among the spiritual counselor’s possible new roles (in addition to those already established), respondents mentioned providing support to health care operators and families coping with bereavement.

An aspect that still does not seem to be considered important concerns the matter of research. It may be that the limited expertise of spiritual counselors in the field of scientific research and dissemination hinders their greater involvement in medical research activities, as well as making it difficult for them to explain the importance of their contribution to physicians.

To sum up, our survey reveals a situation in which 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. But the experience of the Youth Project at the Istituto Nazionale dei Tumori of Milan goes to show that, when such cooperation is fully implemented, it can make an important contribution in responding to patients’ needs (7). This experience can be proposed as a model for other pediatric oncology centers wishing to provide appropriate spiritual support. The model is based on the premise that the right conditions for the spiritual counselor’s actions to be effective can only be achieved by ensuring that chaplains are routinely present at the department and have an ongoing relationship with the medical team and the patients in their care (7). The spiritual counselor can thus be presented to patients as a member of the team, so that patients will see this figure as an integral part of their care, and this makes it easier for patients to accept the help the counselor can offer.

The Youth Project experience demonstrates that the type of demand for spiritual counseling coming from patients and families only partially overlaps with the request to speak to a psychologist (7). In other words, patients and families have certain needs for which optimal management seems to include the services of a specialist adequately trained in providing spiritual support. The chaplain’s work can also be fundamentally important in helping patients remain hopeful, an aspect that relies on the establishment of good relations (16, 17).

For the time being, the data on the efficacy of this model are still insufficient and further, more in-depth studies will be necessary to assess it thoroughly. It also remains to be seen how the needs of patients with religious beliefs different from those of the hospital chaplain can be adequately served. In such cases the spiritual approach should focus on human beings who are suffering and should make every effort to support them in their personal journey through life, irrespective of their chosen religion (18-19-20). The Youth Project experience has also shown that chaplains can establish valuable relationships with patients and families who are non-believers, or of another religious faith (7).

A modern approach to cancer care, especially for adolescent patients, must find a way to integrate spiritual aspects in the provision of care in order to help these patients cope as effectively as possible with their personal suffering. A multidisciplinary effort that genuinely involves the spiritual counselor can help to serve the subjective needs of human beings who are ill.

Acknowledgment

The authors want to thank all colleagues at the Pediatric Hematology-Oncology Departments in Italy and Spain that made this study possible by responding to the survey.

Disclosures

Financial support: None.
Conflict of interest: The authors have no conflict of interest related to this study.
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Authors

Affiliations

  •  Pastoral Care Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  •  Pediatric Oncology Unit, IRCCS Istituto Nazionale Tumori, Milan - Italy
  •  Pediatric Hematology-Oncology Department, Hospital Infantil Universitario Niño Jesús, Madrid - Spain
  •  Pediatric Onco-Hematology, Stem Cell Transplantation and Cellular Therapy Division, Regina Margherita Children’s Hospital, Turin - Italy
  •  Pediatric Radiotherapy Unit, Centro di Riferimento Oncologico, Aviano (Pordenone) - Italy
  •  Pediatric Hematology-Oncology Department and Tettamanti Research Center, Milano-Bicocca University, “Fondazione MBBM”, San Gerardo Hospital, Monza - Italy
  •  Pediatric Oncology Unit, G. Di Cristina Children’s Hospital, Palermo - Italy
  •  Department of Oncology and Hematology, University of Study of Milan, Milan - Italy
  •  Clinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
  • Pediatric Hematology-Oncology Department, Hospital Infantil Universitario Gregorio Marañon, Madrid - Spain
  •  Pediatric Oncology Department, Virgen del Rocio Hospital, Sevilla - Spain
  •  Pediatric Hematology-Oncology Department, Hospital de Cruces, Bilbao - Spain
  •  Department of Woman, Children and General and Specialized Surgery, Second University of Naples, Naples - Italy
  •  Ospedale Meyer/Azienda Ospedaliera Universitaria Careggi, Florence - Italy

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