Nursing Manuscript

Students, Severe Illness, and Palliative Care: Results From a Pilot Study on a School-Based Intervention

American Journal of Hospice & Palliative Medicine® 1-10 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114539187 ajhpm.sagepub.com

M. Beccaro, MA1, G. Gollo, PsyD2, S. Ceccon, BN3, M. Giordano, BN3, E. Salvini, BN3, S. Vignali, BN3, M. Costantini, MD4, and Silvia Di Leo, PsyD4

Abstract This study was aimed at piloting a school-based intervention on severe illness, within a project focused on spreading knowledge of palliative care among high school students (phases 0-2 Medical Research Council Framework). The intervention entailed the screening of a topic-related movie, 2 classroom meetings, and the development of a class-based multimedia production. Five classes from 5 high schools participated in this study, and a before–after evaluation was used to assess intervention feasibility and impact. Valid questionnaires were filled in by 84% (before) and 79% (after) of the 89 students. Concerning students’ knowledge on palliative care, the after evaluation showed a significantly higher paired proportions of students reporting on ‘‘improving patient quality of life’’ and ‘‘life-threatening illness.’’ Intervention components were deemed helpful by students, and positive feedback on the experience was given. Keywords public education, palliative care knowledge, high school students, school-based intervention, feasibility, MRC Framework

Introduction Health-Promoting Palliative Care and Public Awareness Palliative care is a crucial public health issue due to population aging and changing disease patterns.1 According to the World Health Organization (WHO) definition, palliative care is an approach which improves the quality of life of patients and their families facing the problems associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and compelling assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. Moreover, palliative care offers a support system to help families cope with illness and bereavement.2 Health-promoting palliative care is based on the view that health care should be participatory and involve the wider community. This approach enhances collaboration and partnership with society, and recognizes the social character of health, illness, and dying.1 Health-promoting palliative care activities are aimed at implementing educational and informational programs and reorienting health services toward community partnerships.3 However, limited research is available on the process of implementing educational programs on palliative care, together with relevant outcomes thereof.4 Due to widespread misconceptions and confusion within the community (ie, patients, families, schools, workplaces,

and media) concerning the needs of people living with life-threatening illness, and about illness, death, and bereavement, raising public awareness to palliative care is paramount. Indeed, palliative care awareness is key to improve access to available service and to empower both patients and communities. This is crucial for the Italian scenario, where homebased palliative care only began in the early 1980s through the input of nonprofit organizations, together with the National Health Service.5 Although interest in palliative care has increased over the last 20 years through the development of national law and legislation allotting funding for in-patient hospices, palliative care has yet to develop to the fullest, as would be expected of a developed country.6 As a matter of fact, National Law 38/2010 establishing the institution of a National Palliative Care Network was only passed in 2010.7 Law 38/2010 also defines the development of Regional Networks for each of the

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Academy of Sciences of Palliative Medicine, Bentivoglio, Bologna, Italy Hospice ASL 4 Chiavarese, Chiavari, Italy 3 Hospice Maria Chighine, IRCCS AOU San Martino - IST, Genoa, Italy 4 Palliative Care Unit, IRCCS Arcispedale S. Maria Nuova, Reggio Emilia, Italy 2

Corresponding Author: Silvia Di Leo, PsyD, Palliative Care Unit, IRCCS Arcispedale S. Maria Nuova, Viale Umberto I, 50, 42123 Reggio Emilia, Italy. Email: [email protected]

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2 20 Italian regions, in order to ensure continuity of patient care in all settings. This innovative law, ensuring the right to well-being, dignity, and autonomy of individuals, guarantees that all patients have equal access to and quality of palliative care services. Despite enforcement, the uneven distribution and development of palliative care services across the country, together with the Mediterranean attitude of nondisclosure toward illness and death, inform both professional and public knowledge on and consequent approach to palliative care.

The Medical Research Council Framework for the Development and Evaluation of Complex Interventions The Medical Research Council (MRC) Framework approach has been used to develop and evaluate a wide range of treatments and public health interventions, including prevention approaches that require behavior changes, information services, educational programs, and quality improvement programs.8-12 The first version of the MRC Framework has taken on a ‘‘stepwise approach,’’ through 5 phases aimed at exploring the theories and evidence underlying the choice of intervention (phase 0); developing the intervention by identifying components and mechanisms by which the outcomes can be influenced (phase I); testing the feasibility and acceptability of the intervention and defining outcomes (phase II); evaluating the efficacy of the intervention (phase III); and examining the possibility of implementing the intervention practically (phase IV). In 2008, a revised version of the MRC Framework was published, wherein the process of developing and evaluating complex interventions was described according to cyclical phases and a parallel approach suggested13,14 whereby phases 0, I and II would merged into 1 larger interactive activity. Over the last years, a number of articles analyzing the methodological issues in developing and evaluating complex interventions have been published.12,14-17 The need to clarify and further define ‘‘constant’’ and ‘‘variable’’ components of such interventions is crucial. Although constant components underpin intervention’s functions, variables are context related (ie, cultural background, setting, interprofessional behaviors, and interaction) and affect intervention success and wider applicability. Hawe et al12 recommend the ‘‘standardization of functions’’ rather than the ‘‘standardization of components’’: complex interventions might be better developed and assessed in terms of ‘‘key functions’’ over context sensitive ‘‘content and form.’’

The High-School Educational Project on Palliative Care In 2008, the Department of Health Policies and Public Safety (DHPPS) of Liguria Region organized a health promoting educational program for Genoese high schools, in order to stimulate discussion among students on a number of current

health issues. The DHPPS entrusted the Regional Palliative Care Network (RPCN) with the development of a project focusing on palliative care. In accordance with the ‘‘parallel approach’’ reported in the MRC Framework (phase 0-2), the RPCN developed ‘‘The Ligurian High-School Educational Project on Palliative Care,’’ aimed at spreading knowledge on palliative care among high school students. A literature review was performed aimed at highlighting existing experience with and scientific evidence of schoolbased interventions on bereavement and/or palliative care. We identified 11 articles (mostly from the United States and the United Kingdom) focusing on death education within the context of both primary and secondary schools.18-28 Research mostly consisted of theoretical reflections, with a brief description of specific interventions and insights into feedback from students and/or teachers. A review of the Italian ‘‘grey literature’’ showed that national documents on this subject were only available on Web sites and concerned experience performed by local palliative care associations. International and national studies did not include any detailed descriptions of the interventions or evaluations of process or outcomes.29 Findings from the literature, theories on how adolescents conceive illness and death,30-33 and Western lay views on both34 informed the components of our intervention. As there were no scientific contributions focusing specifically on palliative care, and the only available literature centered around death education, authors chose to develop and pilot 2 consecutive interventions: the first was aimed at looking into bereavement and loss caused by severe illness, whereas the second focused directly on severe illness and palliative care. Both interventions included the following components: screening of a movie followed by an interactive debate with experts and classroom meetings chaired by a psychologist and an in-patient hospice nurse. Figure 1 shows the methodological approach adopted throughout the project.29 Findings from the first pilot study on bereavement and loss, carried out in 2009 to 2010, showed that our school-based intervention was indeed feasible and acceptable, as evidenced by student participation, positive feedback, relevant contributions, and topic-related questions.29 Nevertheless, we identified some limitations relating to both the modeling phase and the evaluation process. The strengths and weaknesses of this first pilot study informed the development and implementation of the second pilot study on severe illness and palliative care. The content of this article refers to results from the second pilot study, aimed at:   

developing and piloting an in-depth intervention on severe illness and palliative care in high schools; assessing students’ interest in and knowledge of palliative care, and the overall impact of this experience; assessing the usefulness of intervention components and procedures in both teachers and students.

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Phase 0-1: Development of intervention

Bereavement and loss due to severe illness

1) Identifying existing evidence 2) Identifying a theory 3) Modelling the intervention

Severe illness and Palliative Care

Phase 2a: Testing the feasibility

Phase 2b: Testing the feasibility

“Let’s think about it: bereavement and loss”

“Borderlands: students, illness and palliative care”

Components of intervention:

Components of intervention:

1. screening of a movie followed by an interactive debate with professional experts in palliative care 2. classroom meetings performed by an in-patient hospice nurse and a psychologist

1. screening of a movie followed by an interactive debate with professional experts in palliative care 2. classroom meetings performed by an in-patient hospice nurse and a psychologist

Figure 1. The Ligurian High-School Educational Project on Palliative Care.

The weight of each component in attaining these functions has been a matter of evaluation.

Methods Study Design Medical Research Council Framework parallel approach (phases 0-2)13,14,35 was used in the development of The Ligurian High-School Educational Project on Palliative Care.

The Intervention As students showed interest in palliative care during the first intervention, authors chose to add a further component to the second pilot thereby allowing students to finalize their views by means of a collaborative task. The second intervention therefore featured the following 3 components:  the screening of a movie on severe illness followed by an interactive debate facilitated by a psychologist and an in-patient hospice nurse;  individual class meetings aimed at sharing information on palliative care, jointly chaired by a psychologist and an in-patient hospice nurse;  the development of a class-based multimedia production on ‘‘severe illness and resources that help one cope with it.’’ We hypothesized that these components would lead to the achievement of key functions, that is, that the intervention would:  help students understand the meaning of palliative care;  stimulate students’ interest in palliative care and in discussing it to others;  encourage students to reflect on possible resources to cope with severe illness.

Data Collection Evaluations of the meetings by the experts. Following each class meeting, facilitators compiled an ad hoc form listing topics emerged and debated, quality levels of participation for both students and teachers, and perceived level of student distress. The audio recording of class meetings was not deemed relevant for the purposes of this study. Before–after student evaluation. Before screening the movie, students were asked to answer an ad hoc questionnaire aimed at assessing prior knowledge on palliative care and potential sources of information (ie, family, media, school, and other). On completion of multimedia productions, students were administered an after questionnaire, including 1 open-ended question on knowledge on palliative care, 1 open-ended question focused on possible resources for coping with severe illness, and 4 Likert-type scale questions aiming at assessing usefulness of the components and procedures of the intervention. Three of the latter questions focused specifically on the intervention components (ie, screening of the movie and expert-facilitated debate, class meetings, and the multimedia production) in terms of achieving the key functions (ie, understanding the meaning of palliative care, stimulate students’ interest in palliative care and in discussing it to others, and reflecting on possible resources in coping with severe illness). The fourth question was meant to assess the ad hoc worksheet handed out to students for the preparation of a multimedia production. In all cases, respondents were requested to rate

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4 usefulness of components and procedures on a 5-point Likerttype scale ranging from ‘‘not at all’’ to ‘‘extremely.’’ The final closed-question on the after questionnaire was meant to elicit student feedback on the experience in hand. For this question, respondents were asked to choose among 4 positive adjectives (interesting, enriching, useful, and engaging) and 4 negative adjectives (sad, heavy, depressing, and boring). Furthermore, students were free to enter other adjectives if felt more appropriate. Teacher evaluation. An after evaluation was performed on teachers by means of an ad hoc questionnaire. Three closed-ended questions explored the usefulness of intervention procedures, that is, instructions for completing the student questionnaires, student code management instructions, and ad hoc schedule for the preparation of a multimedia production (5-point Likert-type scale ranging from not at all to extremely). Teachers were also asked to supply feedback on the experience in hand.

(before–after evaluation) and resources used in coping with severe illness (after evaluation) were analyzed for content.37 In order to analyze the first open-ended question, the WHO definition of palliative care2 was used to compile a framework list of mutually excluding domains. The presence or absence of each domain in students’ answers was then categorized accordingly. Changes before and after the intervention were recorded. The reliability of content analysis on the answers was guaranteed by a blind evaluation performed by 2 experts (MB and SDL). Disagreements between assessors were discussed and resolved by consensus. With reference to the second question, resources identified by students were repeatedly read by 1 expert (SDL) and grouped into major data-derived categories with an inductive approach. Patterns of meaning and connections within categories were subsequently identified both by summarizing the information pertaining to each category and by highlighting similarities and differences. Identified categories were then described.

Ethical Considerations

Statistical Analysis

As the involved high schools had never participated in a project on palliative care and a number of the students were minors, researchers adopted specific participant safeguarding procedures. First of all, 1 liaison-teacher was identified for each class; then RPCN experts, representatives of DHPPS of the Liguria Region and teachers met prior to the beginning of the intervention to devise project objectives and methodology and to acquire information on the presence of bereaved students or students experiencing severe illness of a loved-one. This allowed experts to adjust classroom meetings to specific contexts. Finally, parents were sent written information concerning the project, and a specific declaration was issued stating that any data gleaned from the before–after evaluation and any information resulting from classroom meetings would be strictly anonymous and that aggregate-form analysis would be performed by authorized members of the RPCN for scientific purposes only. It was clearly stated that all and any information gathered as a consequence of this study would guarantee and safeguard as stated under the Italian Law on Privacy and, as such, could not possibly be traced. The project was part of the educational program organized and approved by Liguria Region. In accordance with standing internal procedures, it was endorsed by the competent body of the region and not submitted to an health ethics committee.

Descriptive analyses of the before–after compliance to the students’ questionnaires and of all responses to both students’ and teachers’ questionnaires were performed. As regards students’ knowledge of palliative care, the final domains identified through content analysis were counted and compared through paired analysis taking into account the changes in the responses for each patient. Differences between the 2 proportions (before and after the intervention) with 95% confidence interval were estimated and the paired distributions compared by means of the nonparametric McNemar’s test. Data management and statistical analysis were performed through using SPSS version 20.0 for Windows (SPSS Inc, Chicago, Illinois) and MedCalc version 11.6 for Windows (MedCalc Software, Mariakerke, Belgium).

Results Study Sample Five high school classes (from 3 technical schools, 1 scienceoriented school, and 1 school of arts) volunteered to participate in the project, which carried out between December 2010 and April 2011. A total of 89 students were recruited: all were in the fourth grade (ie, 1 year before their graduation), 67.9% were males, with a mean age of 17.5 (range 16-22) .

Qualitative Analysis

The Screening of the Movie and the Interactive Debate With the Experts

Thematic analysis was applied to open-ended answers on the ad hoc form used for the class meetings evaluation.36 Experts’ responses were repeatedly read and categorized by one of the authors (SDL) by means of an inductive (ie, deriving categories from data) and a deductive approach (ie, previously identified categories were used as a framework). Answers to the 2 openended questions on student knowledge of palliative care

In January 2011, researchers organized a screening of a movie entitled ‘‘The first beautiful thing’’38, focusing on the impact of severe illness and loss on an Italian family.The main character in the film was a woman having advanced lung cancer. After the projection, a psychologist (SDL) and an in-patient hospice nurse (SC) moderated a 1-hour debate with the students. During the debate, students mainly commented on how strong the

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Table 1. Questionnaire Compliance at Before–After Evaluation. Schools L. da Vinci E. Majorana G. Giorgi N. Bergese P. Klee Total

Students, no.

Compliance before evaluation, no. (row %)

24 20 16 20 9 89

20 (83.3) 16 (80.0) 15 (93.7) 16 (80.0) 7 (77.8) 74 (84.3)

leading female character appeared to be and on the relationship between this woman and her 2 sons within the context of a troubled family history. Students appreciated the approach whereby a situation of great suffering became a chance for enhancement. Students also asked a number of questions concerning the meaning of palliative care, where palliative care is delivered, which patients can benefit from it, and how family members can support a relative affected by advanced illness. Answers given by the experts attempted to convey the message that, although suffering caused by severe illness cannot be avoided, it can be addressed and alleviated with family and professional support.

Class Meetings and Experts’ Evaluation Ten meetings (2 per class) were held between January and February 2011. All meetings were jointly chaired by an inpatient hospice nurse (ES, SV, MG, and SC) and a palliative care psychologist (SDL and GG). Information gathered from teachers before the beginning of the intervention allowed researchers to identify 1 student whose brother had been diagnosed with leukemia. Liaison teachers for the project were asked to take part in each class meeting, which were uniformed to the utmost for content and context. During the first class meeting, experts drew from questions and comments made after the film to explain the meaning of palliative care according to the WHO definition. The nurse discussed subjects like the palliative care approach, the kind of patients that may benefit from receiving palliative care and settings in which it is provided. Daily practice with dying patients and their families was also deployed to describe the objectives and characteristics of in-patient hospices. The psychologist complemented information provided by the nurse, elicited student questions, views, and experience on severe illness and palliative care. The psychologist also underlined the relevance of considering severe illness and loss of a loved one not only as a painful life event but also as a means of reaching greater understanding of life and relationships. Students took an active part in the meetings by asking questions on a number of specific and relevant issues. During the second class meeting, students were given a title, that is, ‘‘Severe illness and resources to cope with it,’’ and asked to prepare a multimedia production on it. For this purpose, students were also given an ad hoc worksheet listing steps and timing for the above-mentioned assignment. The first step of

Compliance after evaluation, no. (row %) 18 14 14 19 5 70

(75.0) (70.0) (87.5) (95.0) (55.6) (78.6)

the assignment asked teachers to tutor student in their choice of contents for the production. The second step involved groups of students in working on ways of presenting their chosen contents (eg, slides, video, songs, etc). During the final step, output from each group was collected into a maximum 15-minute production. Multimedia productions had to be delivered to the RPCN working group in April 2011. Production tools and contents were discussed during the second class meeting and students and teachers alike were reassured as to expert availability in case of further information and suggestions. Finally, part of this second meeting was dedicated to address unanswered questions from the first class meeting. Topics addressed and debated during both meetings, identified through thematic analysis, were the following: what palliative care is and where it is delivered; what a hospice is; treatment employed in the care of patients with advanced cancer; patient’s illness awareness along illness trajectory; psychological reactions of patients and their relatives; patient’s rights concerning information on diagnosis and prognosis, and medical treatment; advanced directives; communication patterns of cancer diagnosis and prognosis; and health professionals’ emotional involvement in the care of the dying. Thematic analysis revealed that students’ active participation levels during meetings were high or very high in 4 of the 5 classes, whereas teacher participation levels were very high in 3 classes but very low in 2. Overall, the perceived levels of student distress were either nil (2 classes) or limited (3 classes).

Before–After Students’ Evaluation Questionnaire compliance at the before (January 2011) and after (April 2011) evaluations was extremely high in each of the 5 classes, and no substantial reduction was recorded in the after evaluation (Table 1). Prior to the project, 30 (40.5%) students of the 74 had already heard of palliative care. The main sources of information were the media and school (56.7% for both) followed by family (33.3%). Eight (26.7%) students indicated both media and family. Of the 30 students, 29 who had already heard of palliative care reported a definition of it; of the remaining 44 students (ie, those who had never heard of palliative care), 27 attempted a definition. The WHO definition of palliative care was divided into 16 different domains listed in the first column of Table 2. The

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Table 2. Distribution of WHO Domains Identified Through Content Analysis and Paired Differences Between the Proportions Before and After the Intervention.

Domains of WHO palliative care definition

Valid before evaluation Valid after evaluation (n ¼ 65),b no. (%) (n ¼ 57),a no. (%)

1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.

Improvement of patient quality of life Life-threatening illness Prevention and relief of suffering Treatment of pain Treatment of physical symptoms Psychological aspects of patient care Spiritual aspects of patient care Addressing patient and family needs Encouraging patients to live as actively as possible Helping family to cope during patient illness Helping family to cope with their bereavement Team approach in addressing needs Investigations aimed at improving management of clinical problems 14. Early applicability in illness trajectory 15. Affirming life 16. Considering dying as a normal process

1 (1.8) 25 (43.9) 13 (22.8) 8 (14.0) 1 (1.8) 3 (5.3) 1 (1.8) 1 (1.8) – 1 (1.8) – – –

23 (35.4) 62 (95.4) 25 (38.5) 16 (24.6) 4 (6.2) 11 (16.9) 5 (7.7) 6 (9.2) 8 (12.3) 6 (9.2) – 5 (7.7) –

– – –

– – 3 (4.6)

Paired differencesc (n ¼ 41) % (95% CI)d

P value

31.7 (13.2 to 36.5) 48.8 (32.4 to 48.8) 19.5 (3.1 to 35.4) 17.1 (1.0 to 25.6) NA 17.1 (1 to 25.6) NA 12.2 (2.7 to 17.0) NA 12.2 (2.7 to 17.0) – NA –

.001 .000 .096 .065 NA .065 NA .125 NA .125 – NA –

– – NA

– – NA

Abbreviations: CI, confidence interval; NA, not applicable; WHO, World Health Organization. a Of the 74 students, 18 did not answer to this questions in the before evaluation. b Of the 70 students, 5 did not answer to this question in the after evaluation. c Nonparametric McNemar’s test. d No measures of association are computed because at least 1 variable in the 2-way table is a constant.

presence of each domain in the responses to the question on knowledge of palliative care and the paired differences between the proportions before and after the intervention are also reported in Table 2. In the before evaluation, ‘‘life-threatening illness’’ (n ¼ 25; 43.9%), ‘‘prevention and relief of suffering’’ (n ¼ 13; 22.8%), and ‘‘treatment of pain’’ (n ¼ 8; 14.0%) were most frequently mentioned. Moreover, 7 domains did not appear in students’ answers. Overall, the after evaluation reported an increased occurrence of 12 of the 16 items. Life-threatening illness (n ¼ 62; 95.4%), prevention and relief of suffering (n ¼ 25; 38.5%), improvement in patient quality of life (n ¼ 23; 35.4%), and treatment of pain (n ¼ 16; 24.6%) were most frequently mentioned. Remarkably, ‘‘encouraging patients to live as actively as possible,’’ ‘‘team approach in addressing needs,’’ and ‘‘considering dying as a normal process’’ entered students’ answers at this stage, so that only 4 domains were never mentioned throughout. When compared to the before evaluation, answers from the after assessment showed a significantly higher paired proportion of students reporting on the following domains: ‘‘improvement in patient quality of life’’ and ‘‘lifethreatening illness’’. Moreover, ‘‘prevention and relief of suffering’’, ‘‘treatment of pain’’, and ‘‘psychological aspects of patients care’’ reached relevant paired proportions. Table 3 contains descriptions and distribution of categories on resources identified by students in coping with severe illness. Where resources are concerned, students reported a mean of 3 categories (range: 1-6). About two-thirds mentioned

‘‘family,’’ and almost half referred to ‘‘supportive attitudes’’ from others. ‘‘Specialized staff,’’ ‘‘appropriate treatment,’’ and ‘‘suitable places’’ were mentioned by approximately 30% of the respondents’ as well as ‘‘helping patients to fulfill their wishes.’’ Table 4 shows the evaluation of the 3 intervention components with reference to defined key functions (ie, understanding the meaning of palliative care, talking about palliative care with others, and thinking about resources in coping with illness). For all key functions, the highest proportions were reached by the component ‘‘meeting the experts in the classroom,’’ evaluated as ‘‘quite’’ to ‘‘extremely helpful’’ by more than 90% of the students (range from 91.4% to 97.1%). Concerning the usefulness of procedures, the ad hoc worksheet containing information on how to prepare a multimedia production was scored between quite and extremely helpful by 66.7% of the students. Student answers on the overall impact of the experience show that ‘‘interesting’’ (84.1%), ‘‘useful’’ (58.0%), and ‘‘enriching’’ (42.0%) were the most frequently chosen adjectives by respondents. ‘‘Sad’’ (30.4%) was the most frequently mentioned negative adjective.

Teacher Evaluation All teachers filled in the after evaluation questionnaire. Unanimous positive feedback was given concerning the experience as a whole, emphasis was placed on the importance of addressing such difficult topics as severe illness and death with students, given the social tendency to either hide the issue or turn it into a show. Intervention procedures were evaluated as

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Table 3. Description and Distribution of Categories of Resources in Coping With Severe Illness. Could you please list resources that may be helpful in coping with severe illness?

Total sample (n ¼ 70),b no. (%)

a

Family Emotional support offered by relatives and/or friends Supportive attitudes Being close to patients, listening to patients, allowing patients to communicate and share their life story, feelings, and emotions within a trustworthy relationship Specialized staff Expert professionals or trained and skilled staff Helping patients to fulfill their wishes Paying attention to patients’ wishes and goals, and doing whatever is possible to achieve wishes and goals Appropriate treatment Pharmacological and nonpharmacological treatment aimed at alleviating patient’s physical and/or psychological suffering, palliative care Suitable places Facilities or environments equipped to meet patients physical and/or psychological needs Patient attitudes Eg, bravery, patience, peacefulness, positive thinking, and will power Illness awareness Being aware of illness, receiving truthful information about illness from health caretakers and/or family Self-determination Acknowledging patients freedom to act as they wish, promoting and protecting patient self-determination Other

49 (75.4) 30 (46.2)

20 (30.8) 19 (29.2) 18 (27.7)

17 (26.2) 13 (20.0) 9 (13.8) 6 (9.2) 13 (20.0)

a

Students were asked to list 1 or more resources that they considered helpful. Of the 70 students, 5 did not answer to this question.

b

Table 4. Student Evaluation of the 3 Components of the Intervention (N ¼ 70)b. How helpful do you think the 3 components have been in Watching the movie and discussing issues with experts Meeting experts in the classroom Making the multimedia production

Understanding the meaning of Talking about palliative care with Thinking about resources in coping palliative care, % quite/extremelya others, % quite/extremelya with illness, % quite/extremelya 81.4

81.4

75.6

97.1

91.4

91.4

61.4

70.0

71.4

a

Rating scale: not at all, slightly, quite, very, and extremely. Of the 70 students, 1 did not answer these questions.

b

being quite to extremely useful by 4 of the 5 teachers. One teacher suggested simplifying procedures for the delivery of the multimedia production.

Discussion Findings from this second pilot study developed, implemented, and evaluated within the Ligurian High-School Educational Project on Palliative Care seem to confirm both the feasibility and acceptability of interventions aimed at spreading knowledge of palliative care among adolescents.29 Evaluations from the experts on high levels of student participation during meetings and overall feedback on the experience from both students and teachers show high interest in this project. Proof of interest was also supported by the quantity and quality of questions and comments made by students during the postmovie debate and class meetings. These in turn led experts to

discuss a wider range of relevant topics proper of the current debate on palliative care and to double the length of scheduled meetings. In particular, students appeared to be interested in the daily practice of nurses within in-patient hospice setting. Results of students’ before–after evaluation show that the intervention may have improved their knowledge on palliative care. Indeed, besides overall increased frequencies of most WHO domains of palliative care in the after evaluation, the 2 key domains—that is, improvement of patient quality of life and life-threatening illness—reached significantly higher proportions. A range and variety of different resources were identified by students in coping with severe illness. Besides referring to support givers and supportive attitudes, resources also included specific features and ethical principles of palliative caregiving. Furthermore, in keeping with the existing literature,30,32,33 specific respondent age-related features emerged, according to

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8 Box 1. Content and Dissemination of the 5 Multimedia Class Productions. Schools

Production content

L. da Vinci

Students wrote and produced a story about a terminally ill classmate who was admitted to a hospice. The story, peppered with clips from famous films, poems, and literary pieces on and around dying and death, became a pretext to explore and explain the palliative care approach. The video ends with lyrics sung by one of the students.

E. Majorana

Students produced a video documentary where professionals from a local hospice were interviewed by students on both principles of palliative care and places where it is delivered. The interviews alternated with readings on the history of the hospice movement in Europe and extracts from hospice movement founder Dame Cecily Saunders’ book. The documentary ends with a short poem written by the students, in which life is presented as a journey, and palliative care as a means of easing the last part of the journey.

G. Giorgi

Students wrote and produced a story with background music. The story is about a teenager diagnosed with leukemia when he was 17 years old, set in the context of a troubled family history. Despite receiving a bone marrow transplant from his father, the boy dies. Nevertheless, during illness father and son support each other and grow closer. The production ends with a poem written by a student on the value of hope when confronted with adverse life events.

N. Bergese

Students produced a slideshow to the tune of a popular Italian song in which resources needed to address severe illness were presented. Images were used to evoke the idea of closeness, support, and medical treatment.

P. Klee

Students produced a sequence of slides containing both phrases and images to the tune of a popular English song. Words and pictures were used to evoke both the ideas of patient suffering, loneliness, and abandonment, as well as patient hopes, dreams, and wishes.

Dissemination Productions were all evaluated for content and artistic quality, respectively, by RPCN research group and the director of a local TV station. In May 2011, Liguria Region organized a special event involving the projection of all 5 multimedia productions and the awarding by the Regional Minister of Health of a ‘‘prize’’ for the best piece of work. Representatives from the L. da Vinci class were consequently invited to participate in a project-dedicated local television program broadcast in June 2011.

which ‘‘patient attitudes’’ tended to be invested with a ‘‘feeling of power’’ before severe illness and death. Notably, similar resources appeared in the assigned multimedia productions. Further information on this topic is reported in Box 1. As for attaining key functions, that is, understanding the meaning of palliative care, stimulating student interest in palliative care and in discussing it to others, reflecting on possible resources in coping with severe illness, the weight of all 3 intervention components was deemed helpful by participants, especially the classroom meetings. Reasons for the latter may be that classroom meetings were perceived by students as safer environments for open interaction, and that the friendly attitude adopted by in-patient hospice nurses involved in the project fostered discussion. Further research is needed to check the impact of local health literacy, culture, context, teaching, and learning styles and their interactions, on study outcomes. As far as we are aware, this is the first study aimed at evaluating the feasibility and acceptability of a school-based intervention on palliative care. Therefore, our findings cannot be compared to those from other studies on the same topic. This clearly invites further field evidence.

over potential methodological issues such as secular trend, regression of the mean, selection, and measurement bias and confounding. Moreover, owing to the lack of a control group, researchers were unable to define whether other events took place at the time of the intervention which might have informed observed changes.39,40 In this study, selection bias might concern the convenience nature of the sample. Indeed, all 5 high schools volunteered to the project, possibly owing to the teacher interest in the addressed topics. We considered the possibility of including teachers in the before–after evaluation, as it would be interesting to gather information about changes in their knowledge on palliative care. However, this assessment was ruled out as unfeasible, given the need to meet teachers prior to the beginning the intervention to discuss objectives and methodology of the project and share specific procedures aimed at safeguarding the students involved. Concerning the measurement bias, validated assessment tools were unavailable; we therefore developed ad hoc measurement instruments for student and teacher evaluations. Moreover, we did not explore differences in answers by different schools, as the sample size was too small, and the classes involved excessively heterogeneous in terms of student numbers.

Limitations

Conclusion

This is a 1-group pretest–posttest design study, whose internal validity depends on the degree of control that researchers have

The main findings from this MRC Framework phase II study appear to confirm both feasibility and acceptability of a high

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school-based intervention on severe illness and palliative care. Moreover, results provide a sound basis for further exploring the appropriateness of outcome measures. Evidence of the strengths and weaknesses of developing and implementing this kind of intervention might inform similar projects by other researchers. Authors’ Note Congress oral presentation: National Congress of the Italian Society for Palliative Care (SICP), Trieste, Italy, October 26-29, 2011. 7th Research Forum of the European Association for Palliative Care, Trondheim, Norway, June 7-9, 2012. Congress ‘‘Cuidados paliativos en ensenanza secondaria? Experiencias formativas y una propuesta,’’ dell’’Istituto Cultura y Sociedad de la Universidad de Navarra,’’ Pamplona, Spain, October 30, 2012.

Acknowledgments The authors thank the staff of the Department of Health Policies and Public Safety (Liguria Region) who organized and supported the high school educational program. A special thanks goes to the students and teachers of ‘‘Liceo Scientifico Leonardo da Vinci,’’ ‘‘Liceo Artistico Statale Klee-Barabino,’’ ‘‘Istituto Superiore Statale Majorana— Giorgi,’’ and ‘‘Istituto Alberghiero Nino Bergese’’ (Genoa, Italy) who, through their active involvement, led this initiative really become possible and successful.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors received no financial support for the research, authorship, and/or publication of this article.

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Students, Severe Illness, and Palliative Care: Results From a Pilot Study on a School-Based Intervention.

This study was aimed at piloting a school-based intervention on severe illness, within a project focused on spreading knowledge of palliative care amo...
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