Chiara Mastroianni1,2, Michela Piredda1,3, Chiara Taboga2, Fiorino Mirabella4, Elisabetta Marfoli3, Giuseppe Casale2, Maria Matarese3, Katherine H. Murray Frommelt5, and Maria Grazia De Marinis3

Abstract

Nurses’ attitudes toward caring for dying patients have an impact on the quality of

the care provided. Education can improve knowledge and attitudes toward end-

of-life care. No validated tool that measures such attitudes is available for Italian

nursing students. The aim of this study was to translate the Frommelt Attitudes

Toward Care of the Dying Scale (FATCOD) Form B from English into Italian and

to establish its validity and reliability within an Italian population of students. A two-

stage design was used. Stage 1 adapted the original version of the tool and tested it

for content validity through a multistep process. Stage 2 tested its psychometric

properties by analyzing internal consistency, test–retest reliability, and construct

OMEGA—Journal of Death and

Dying

2015, Vol. 70(3) 227–250

! The Author(s) 2015

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DOI: 10.1177/0030222815568944

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1Tor Vergata University, Rome, Italy 2Antea Formad, Rome, Italy 3Research Unit in Nursing Science, Campus Bio-Medico di Roma University, Rome, Italy 4Italian National Institute of Health, Rome, Italy 5Clarke University, Dubuque, IA, USA

Corresponding Author:

Chiara Mastroianni, Antea Formad, Piazza Santa Maria della Pietà, 5 (Padiglione 22) - 00135 Rome, Italy.

Email: [email protected]

validity. The convenience sample consisted of 465 nursing students from all the

universities of one Italian region. Measures of stability showed a very good overall

(0.87) intraclass correlation coefficient (ICC). The discriminating capacity of the scale

was adequate with good values of asymmetry and kurtosis for most of the items.

Good internal consistency was found. The six factors derived from the factor analysis

are the following: Fear/Malaise, Communication, Relationship, Care of the family,

Family as Caring, and Active Care. FATCOD Form B-I is a valid, reliable, and accept-

able tool for evaluation of attitudes toward end-of-life care in Italian students. It

measures six specific dimensions that should be highlighted during health care stu-

dent education and training.

Keywords

attitude, attitudes to death, Frommelt Attitude Toward Care of the Dying Scale,

nursing students, reproducibility of results, terminal care, translations, validation

studies

Introduction

Palliative care is defined by the Council for Hospice and Palliative Care Service as

the active total care of patients whose disease is not responsive to curative treat-

ment. Control of pain, of other symptoms and of psychological, social and spiritual

problems is paramount. The goal of palliative care is achievement of the best pos-

sible quality of life for patients and their families. (World Health Organization

Definition of Palliative Care, 2002)

This definition highlights central aspects of palliative care: focus on patient needs and importance of patient’s choice about maintenance of the best possible quality of life; alliance between the patient and his or her family which are together the object of the care. At the same time, the patient is an active subject involved in palliative care, and once the patient has died, the grieving family becomes the object of the care.

A relationship based on the utilization of all available communicative tools is the preferential way to achieve a patient- and family-centered care. Palliative care requires health-care professionals with specific competences to give continuous and global care in order to achieve the best possible quality of life for the patient and his or her family, in both inpatient and outpatient settings (De Vlieger, Gorchs, Larkin, & Porchet, 2004). Competence is a cluster of related abilities, commitments, attitude, know- ledge, and skills that enable a person to act effectively in a job or in a situation (Massai, Amerini, Borgellini, & Bugnoli, 2007; Pellerey, 1983).

228 OMEGA—Journal of Death and Dying 70(3)

Attitudes are defined as a system of beliefs and knowledge that everyone has got or has learned during their lifetime (Massai et al., 2007). People do not have an innate disposition to take care of the dying: Attitudes toward the death and the dying are psychological behaviors learned through social and cultural experiences (Mallory, 2003). Nurses’ attitudes toward caring for dying patients may have an important influence on the quality of care they provide (Braun, Gordon, & Uziely, 2010).

Previous research showed that structured education which integrates theor- etical and practical training programs in palliative care can improve knowledge and attitudes toward end-of-life care (Brajtman, Fothergill-Bourbonnais, Casey, Alain, & Fiest, 2007; Cooper & Barnett, 2005; Kwekkeboom, Vahl, & Eland, 2005; Marinucci & Binetti, 2006).

Background

Researches on attitudes of nurses or other health-care professionals were first conducted in the 1980s, in oncological settings. The aim of these studies was to measure attitudes toward cancer (Corner, 1988). One of the first problems was how to measure attitudes. The complexity of attitudes measurement derives from the strict relationship between the stimuli that cause them (in our case, the terminally ill and the end-of-life care), their three components (cognitive, emotional, and behavioral), and the way through which they are expressed, that is the behavior.

In the education literature, the emotional aspects that reflect attitudes toward the terminally ill care and the role of feelings and beliefs/values have been neglected (Mallory, 2003). However, some authors have defined specific instruments to analyze the formative needs of students and health- care professionals and to measure the results of training programs about attitudes toward care of terminally ill patients and about knowledge and beliefs on death.

Haley, Juan, and Gagan (1968) developed the Cancer Attitude Scale (CAS) and used it to measure physician’s attitudes toward cancer. This was the first time the role of education, clinical experience, and individual personality in developing specific attitudes were investigated. Collett and Lester (1969) developed the first scale aimed at evaluating emotions and attitudes toward death according to a personal view (analysis of his own death) or to a mediate view (analysis of other people’s death). This multidimensional tool investigated the fear of death and the fear of the dying process. In 2003, the reliability of this scale was improved (Lester & Abdel- Khalek, 2003).

In current literature, many instruments are available aimed not only at eval- uating attitudes toward cancer or fear of death and dying but also at measuring attitudes toward the care of terminally ill patients. Unfortunately, many of them

Mastroianni et al. 229

were not validated (Cohen, O’Connor, & Blackmore, 2002; Romàn, Sorribes, & Ezquerro, 2001; Vejlgaard & Addington-Hall, 2005).

Leveton, Hayslip, and Pell (1999) developed a valid and reliable measure of physicians’ end of life attitudes (PEAS) that includes two subscales: personal preparation and professional role. This scale was modified by Weigel, Parker, Fanning, Reyna, and Brewer Gasbarra (2007) and renamed as PEAS, in short, to be applicable to nurses but was not validated.

Another tool was developed (Bradley et al., 2000) to measure clinicians’ (physicians and nurses) attitudes about care at the end of life. The factors identified in the factor analysis were Professional Responsibility, Efficacy of Hospice, and Clinician–Patient Communication. This was a validated tool, but many of its 12 items were focused on efficacy of hospice care, making inappropriate its use in other palliative care services.

ASBID is a scale developed by Waltman (1990) to measure nurses’ attitudes, subjective norms, and behavioral intentions toward the care of dying patients and their families. Factor analysis identified three dimensions measured: general acute care measures for the dying, open communication with the dying, and continuing care for bereaved family members.

None of these tools were specifically developed for students nor were trans- lated and validated into Italian.

The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) is one of the most valid, reliable (Frommelt, 1991; Frommelt, 2003), acceptable, and easy-to-fill instruments (Mastroianni et al., 2009). It was created for nurses and students of different health-care professions. Two versions of the FATCOD are available: The original one (FATCOD Form A) is specifically designed to evalu- ate nurses’ attitudes (Frommelt, 1991), while the FATCOD Form B (Appendix 1) is addressed to students of different disciplines involved in palliative care. The FATCOD Form B was obtained by removing the words “nurse” or “nursing” in nine items of the original FATCOD Form A. Both the FATCOD Form A (Brajtman, Fothergill-Bourbonnais, Casey, Alain, & Fiest, 2009; Braun et al., 2010; Dunn, Otten, & Stephens, 2005; Morita et al., 2007) and the FATCOD Form B (Barrere, Durkin, & LaCoursiere, 2007; Frommelt, 2003; Iranmanesh, Dargahi, & Abbaszadeh, 2008b; Iranmanesh, Savenstedt, & Abbaszadeh, 2008a; Miyashita et al., 2007) were used in the literature to investigate the influence of education on the development of positive attitudes toward the care of dying patients. A principal component analysis, which is a common approach to the statistical evaluation of scales or questionnaires (Velicer & Jackson, 1990), was not performed for the original version of the instrument.

The aim of this study was to translate the FATCOD Form B from English into Italian and to test its psychometric properties within an Italian population to offer the first valid tool to an Italian palliative care context and specifically to students.

230 OMEGA—Journal of Death and Dying 70(3)

Methods

Instruments

The FATCOD scale is a 30-item tool using a 5-point Likert scale to indicate respondents’ attitudes toward caring for dying patients. The instrument includes 15 positively (1, 2, 4, 10, 12, 16, 18, 20, 21, 22, 23, 24, 25, 27, and 30) and 15 negatively worded statements (3, 5, 6, 7, 8, 9, 11, 13, 14, 15, 17, 19, 26, 28, and 29) with response options: strongly disagree, disagree, uncertain, agree, and strongly agree. Positive items are scored one (strongly disagree) to five (strongly agree). Scores are reversed for negative items. Possible scores range from 30 to 150. A higher score indicates a more positive attitude toward caring for this patient population. A brief section collects sociodemographic data, including gender, age, education, religious belief, and previous experience working with terminally ill patients.

Research Design

This study used a two-stage design. Stage 1 developed the Italian version of the FATCOD Form B (that becomes FATCOD Form B-I, see Appendix 2) and tested it for content validity through forward and backward translation, expert committee meeting, and pilot test. Stage 2 tested the psychometric properties of the Italian version of the FATCOD Form B by analyzing internal consistency, test–retest reliability, and construct validity. Before the study, authorizations were obtained from the chairmen of each university involved, and informed consent was obtained from student participants.

Stage 1

The FATCOD Form B was translated from English into Italian following the guidelines recommended by Beaton, Bombardier, Guillemin, and Ferraz (2000) for the cross-cultural adaptation of self-report measures.

Accordingly, two independent bilingual translators, nurses with experience in palliative care, produced two initial forward translations. Then, after discussion and comparison, they produced one agreed Italian version. This was back trans- lated into English by two professional bilingual translators, with experience in health science, unaware of the original English version. The two translators were neither aware nor informed of the concepts explored. This back translation was sent to the original author of the instrument who checked that the conceptual meaning of each item was conserved in the process rather than literal meaning. The translators made sure that the final questionnaire would be easily under- stood by people with Grade 6 level of reading, as recommended.

Mastroianni et al. 231

An expert committee meeting was held in the Palliative Care Unit of Antea Association of Rome with three nurses having experience in palliative care, one nurse with experience in education and two training nurses, a methodologist, a language professional, and the translators. The committee examined the source and back-translated questionnaires for semantic, idiomatic, experiential, and conceptual equivalence and reached consensus on the items. Some little lexical changes were made to clarify the text and to preserve the meaning of the original questionnaire (Table 1).

This pre-final translated version was pretested on a convenience sample of 38 medicine and nursing students in order to check its comprehensibility and initial reproducibility. They were 10males (26%) and 28 females (74%), with amean age of 23 years, recruited from the Campus Bio-Medico di Roma University. The same interviewer, in the same conditions, submitted questionnaires again within aweek. Students completed a formwhere they recorded the following: age, gender, date, compilation time, difficulties in filling the tool, and anydisagreement between answers from the first to the second submission. In this case, studentsmight articu- latewhy theanswerswere changed.Onthebasis of the results, some further changes were made. Analysis showed good reproducibility for every item, except for items 12, 16, 19, and 30 that showed insufficient reproducibility values (ICC¼ 0.2–0.5). These items were modified in the second translation, following the suggestions given by respondents. Changes consisted prevalently in giving practical examples, to make the sentences less ambiguous. For example, Item 12 “Family of a termin- ally ill patient should be involved in the care of physical needs of his/her family member” was changed to “Family of a terminally ill patient should be involved in the care of physical need (feeding; personal hygiene) of his family member.” Results from this phase have already been published (Mastroianni et al., 2009).

Stage 2

Participants. FATCOD Form B translated and piloted in Stage 1 was submitted anonymously to a convenience sample of nursing students (n¼ 465) from all the universities of the Italian Region Lazio with the same characteristics of the ones involved in the first stage. The sample size was calculated in order to allow for at least 10 subjects for each item for factor analysis (Burns & Grove, 2005). A subsample of 32 students filled in the questionnaire a second time to test its stability (test-retest).

Statistical analysis

Descriptive statistics were conducted for every item and for the whole scale:Mean, standard deviation, andmedianwere calculated as central tendency anddispersion estimates. Measures of skewness and kurtosis were used to show discrimination capacity. Reproducibility was investigated by Pearson correlation and ICC.

232 OMEGA—Journal of Death and Dying 70(3)

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Factor structure of the FATCOD Form B items was explored by principal com- ponent analysis with Varimax Rotation, Cattel Scree-Test, and plausibility of factorial solution. Factorially derived subscales were evaluated by Cronbach’s alpha coefficient. Statistical analysis was performed using SPSS 17.0TM.

Results

Sample Characteristics

One hundred and twenty-two student participants (26.2%) were males and 343 (73.8%) were females with a mean age of 23 years. Only questionnaires with answers to every item were considered in the analysis: 23 questionnaires were excluded because they were not complete. Four hundred and forty-two ques- tionnaires were analyzed. The test–retest group had demographic characteristics similar to the whole group: mean age of 22 years; four males (12.5%), and 28 females (87.5%).

Reliability

Measures of test–retest reliability, discrimination ability, and internal consist- ency for each item and for the total scale are presented in Table 2. Analysis of stability shows a very good overall (0.87) ICC and an ICC between 0.60 (accept- able) and 0.86 (very good) for 29 (97%) of the 30 items. Item 16 shows an ICC value< 0.60. Measures of skewness and kurtosis show good discrimination cap- acity, with only five items with a score >1. Internal coherence of the scale is supported by high Cronbach’s alpha coefficient of 0.81 for the first submission and 0.83 for the second one (Table 2). In addition, filling in the questionnaire requires a mean time of 6min and is usually considered easy.

Construct Validity

FATCOD Form B data were explored for construct validity by performing a principal component analysis with Varimax Rotation. The criteria used to find the best fitting structure and the right number of factors were the Eigenvalues greater than 1.0, the Cattell’s scree test, a factor loading cut-off of 0.30, the percentage of total variance explained, and the plausibility of factorial solution.

The Bartlett’s chi-square test of sphericity was first used to determine whether the data came from a sample of a normally distributed population and whether they were appropriate for a factor analysis. This test resulted in highly significant values (�2¼ 2302.24; sig. p< .001). The Kaiser-Meyer-Olkin (KMO) index of sampling adequacy was also examined and found to be very high at 0.907. Based on these results, the dataset was deemed suitable for a factor analysis. Factorially derived subscales were evaluated by Cronbach’s alpha coefficient.

234 OMEGA—Journal of Death and Dying 70(3)

Table 2. Psychometric Characteristics of FATCOD Form B-I.

Variables (items) Mean (SD) Median Skewness Kurtosis Pearson’s (r) ICC

1 4.5 (0.6) 4.5 �0.39 �0.92 0.67 0.67 2 3.3 (1.2) 3.0 �0.25 �0.64 0.74 0.74 3 2.9 (1.0) 3.0 �0.02 0.11 0.68 0.66 4 4.3 (0.9) 5.0 �1.30 1.02 0.89 0.69 5 4.0 (0.9) 4.0 �0.44 �0.58 0.64 0.64 6 3.5 (1.0) 4.0 �0.76 0.38 0.74 0.73 7 4.0 (1.1) 4.0 �1.06 0.43 0.79 0.78 8 2.5 (1.0) 2.0 0.39 �0.15 0.72 0.71 9 3.7 (1.1) 4.0 �0.29 �1.19 0.74 0.74

10 3.9 (0.7) 4.0 �0.62 0.76 0.66 0.66 11 3.8 (0.9) 4.0 �0.34 �0.66 0.67 0.67 12 4.3 (0.8) 4.0 �1.27 2.41 0.65 0.63 13 3.7 (0.9) 4.0 �0.66 0.75 0.62 0.62 14 3.8 (1.0) 4.0 �0.82 0.11 0.66 0.65 15 3.9 (0.9) 4.0 �0.68 0.75 0.83 0.83 16 4.5 (0.6) 5.0 �1.68 0.75 0.57 0.55 17 3.5 (1.1) 4.0 �0.64 �0.17 0.81 0.81 18 4.6 (0.5) 5.0 �0.57 �1.77 0.63 0.61 19 4.0 (0.8) 4.0 �0.58 �0.04 0.61 0.60 20 4.3 (0.7) 4.0 �0.52 �0.65 0.66 0.66 21 3.9 (0.9) 4.0 �0.66 0.70 0.70 0.70 22 4.5 (0.8) 5.0 �0.67 �0.51 0.64 0.64 23 4.5 (0.5) 4.0 0.11 �2.10 0.62 0.60 24 3.6 (0.9) 4.0 �0.73 0.85 0.86 0.86 25 3.7 (1.0) 4.0 �0.45 �0.11 0.63 0.63 26 3.1 (0.9) 3.0 0.35 �0.75 0.85 0.85 27 3.7 (0.8) 4.0 �0.08 �0.41 0.69 0.69 28 4.2 (0.8) 4.0 �1.12 1.76 0.74 0.73 29 3.0 (0.8) 3.0 0.68 0.25 0.60 0.60

30 4.1 (0.7) 4.0 �0.15 �0.63 0.62 0.60 Whole scale 3.8 (0.3) 3.8 0.28 0.28 0.87 0.87

Note. Cronbach’s alpha first submission¼ 0.81; Cronbach’s alpha second submission¼ 0.83. Abbreviation: ICC, intraclass correlation coefficient.

Mastroianni et al. 235

Principal component analysis defined the presence of nine dimensions with an Eigenvalue greater than unit (Table 3). However, the last three components had an Eigenvalue just a bit greater than unit, and the Cattel’s scree plot showed a clear flattening of the curve after Component 6. It was thus decided to extract the factors from one to six that explain 42.2% of the total variance (Polit & Beck, 2004) (Table 4). All items of the six factors loaded above 0.30.

Most of the variables were well defined by the factorial solution with high mean commonality values. Varimax Rotation allowed the researcher to obtain well-structured factorial solution. Only four variables (items 1, 8, 19, and 21) were equally saturated by more than one factor; these were assigned to the factor linked to them with a higher conceptual coherence (Table 3).

The emerging factors related to Fear/Malaise (Items 1, 3, 5, 7, 8, 13, 14, 15, and 26), Care of the Family (Items 4,16, and 22), Communication (Items 2, 6, 11, 27, 28, and 30), Family as Caring (Items 12,18, and 20), Relationship (Items 9, 10, 17, 21, and 29), and Active Care (Items 19, 23, 24, and 25). (Table 4)

Internal consistency of the six aforementioned dimensions was evaluated with Cronbach’s alpha coefficient. The whole scale showed a satisfactory Cronbach’s alpha coefficient of 0.75 (Table 3).

Discussion

A rigorous cross-cultural adaptation process undertaken in Stage 1 established the cultural equivalence of the tool, which refers to similar meanings and rele- vance of the constructs investigated across different cultures (Jones, Lee, Phillips, Zhang, & Jaceldo, 2001) and not only language translation. In this way, the comparability of studies across languages or cultures is increased. The process recommended by Beaton et al. (2000) was thoroughly followed with the goal of attaining semantic, idiomatic, experiential, and conceptual equivalence between the source and target questionnaires.

Expert group consultations helped to test content validity and ensure text clarity, appropriateness, and cultural equivalence. Analysis of reproducibility on pilot test results helped to improve ICC values by modifying some items in a further translation to make them clearer to the reader (Mastroianni et al., 2009). The overall test–retest reliability of FATCOD Form B-I was very good with a value of 0.87 of ICC for the total scale and ranging between 0.60 (acceptable) and 0.86 (very good) for 97% of items. This was comparable with the results obtained by the Pearson product moment correlation (0.9269) for determining the reliability of the original questionnaire (Frommelt, 2003).

Measures of skewness and kurtosis showed good discrimination capacity, with only five items with a score >1. Internal consistency was supported by high Cronbach’s alpha coefficient of 0.81 for the first submission and 0.83 for the second one. In addition, filling in the questionnaire required a mean time of 6min and was usually considered easy.

236 OMEGA—Journal of Death and Dying 70(3)

Table 3. Rotated Factor Matrix and Cronbach’s Alpha Coefficient.

Factors

F1 F2 F3 F4 F5 F6

5 I would not want to care for a dying

person.

0.652

15 I would feel like running away when the

person actually died.

0.633

13 I would hope the person I’m caring for

dies when I am not present

0.557

14 I am afraid to become friends with a

dying person.

0.540

3 I would be uncomfortable talking about

impending death with the dying person.

0.527

26 I would be uncomfortable if I entered

the room of a terminally ill person and

found him/her crying.

0.503

7 The length of time required to give care

to a dying person would frustrate me.

0.476

22 Care should extend to the family of the

dying person.

0.739

4 Caring for the patient’s family should

continue throughout the period of

grief and bereavement.

0.663

16 Families need emotional support to

accept the behavior changes of the

dying person.

0.610

11 When a patient asks, “Am I dying?” I

think it is best to change the subject to

something cheerful.

0.712

6 The non-family caregivers should not

be the one to talk about death with

the dying person.

0.524

28 Educating families about death and

dying is not a non-family caregiver’s

responsibility.

0.487

30 It is possible for non-family caregivers

to help patients prepare for death.

0.486

27 Dying persons should be given honest

answers about their condition.

0.471

2 Death is not the worst thing that can

happen to a person.

0.410

(continued)

Mastroianni et al. 237

Table 3. Continued

Factors

F1 F2 F3 F4 F5 F6

19 The dying person should not be

allowed to make decisions about his

or her physical care.

0.354 0.335

18 Families should be concerned about

helping their dying member make the

best of his or her remaining life.

0.715

20 Families should maintain as normal an

environment as possible for their dying

member.

0.705

1 Giving care to the dying person is a

worthwhile experience.

0.396 0.461

12 The family should be involved in the

physical care (feeding, personal hygiene)

of the dying person.

0.444

21 It is beneficial for the dying person to

verbalize his or her feelings.

0.433 �0.365

30 Family members who stay close to a

dying person often interfere with the

professional’s job with the patient.

0.671

10 There are times when death is wel-

comed by the dying person.

�0.525

17 As a patient nears death, the non-family

caregiver should withdraw from his or

her involvement with the patient.

0.430

9 It is difficult to form a close relationship

with the dying person.

0.377

25 Addiction to pain relieving medication

should not be a concern when dealing

with a dying person.

0.657

24 The dying person and his or her family

should be the in-charge decision

makers.

0.458

23 Caregivers should permit dying persons

to have flexible visiting schedules.

0.433

8 I would be upset when the dying person

I was caring for gave up hope of getting

better.

0.375 0.415

Number of items 9 3 6 3 3 5 4

Cronbach’s alpha of factors 0.69 0.53 0.56 0.59 0.48 0.47

Cronbach’s alpha of the whole scale 0.75

238 OMEGA—Journal of Death and Dying 70(3)

Stage 2 tested the psychometric properties of the Italian version of the FATCOD Form B-I by analyzing internal consistency, test–retest reliability, and construct validity. The FATCOD results demonstrate a satisfying reprodu- cibility in relation to the stability of the scores for most of the items. Construct validity was assessed through factor analysis. The factorial structure is simple and coherent with a good internal consistency for the entire scale and acceptable consistency for every single subscale. Unfortunately, it was not possible to com- pare our factorial results with previous studies that developed or used the FATCOD because it was not possible to find published information about pre- vious undertaken factor analysis.

Results from the psychometric test of the Italian version of the FATCOD Form B show that it is a reliable and valid tool for the assessment of student attitudes toward end-of-life care.

The Fear/Malaise factor is reported in many studies (Brajtman et al., 2007; Marinucci & Binetti, 2006) regarding training in palliative care. Fear, distress, and anxiety are described as the most frequent barriers to proper attitudes toward death and dying. The fear that students often face when caring for ter- minally ill patients may be related to fear of losing the self, fear of the unknown, and fear of pain and suffering (Braun et al., 2010). Attitudes about caring for terminally ill patients are negatively related to attitudes to death and fear of death (Lange, Thom, & Kline, 2008; Rooda, Clements, & Jordan, 1999).

Communication and Relationship are concepts often described in studies about core attitudes toward care of the terminally ill patient. In particular, communi- cation is often investigated by instruments about the same topic (Bradley et al., 2000; Simon, Ramsenthaler, Bausewein, Krischeke, & Geiss, 2009; Weigel et al., 2007). Relationship is a “core concept” of nursing care (Wu & Volker, 2012) based on acknowledgment of the relational nature of the person. Communication is a necessary tool for creating, maintaining, and fostering an interpersonal relationship. The ability to respond to complex questions about life and death makes the difference in nurse’s skills in palliative care. Understanding the right moment to be silent, communicating maybe only with a discrete touch,

Table 4. Factors and Explained Variance.

Factor Variance explained (%) Items saturated

F1: Fear/Malaise 14.4 1, 3, 5, 7, 8, 13, 14, 15, 26

F2: The Care of the Family 8.4 4,16, 22

F3: Communication 5.5 2, 6, 11, 27, 28, 30

F4: Family as Caring 5.2 12,18, 20

F5: Relationship 4.6 9, 10, 17, 21, 29

F6: Active Care 4.1 19, 23, 24, 25

42.2 (total)

Mastroianni et al. 239

sustaining and encouraging colleagues to be honest when they would hide the truth to the patient, and showing empathy and talking to the family when the last hour is coming, and a combination of these qualities makes palliative care a specific discipline (Becker, 2009; Canning, Yates, & Rosenberg, 2005). The cen- trality of the patient becomes the “centrality of nurse–patient relationship.”

The factors related to the family, Family as Caring and Care of the Family, should be considered from the following two different points of view: the care to the family especially during their grieving process and the involvement of rela- tives and significant others in the care of terminally ill patients, in order to manage their physical, clinical, spiritual, social, and psychological needs. This factor is consistent with one of the three dimensions of attitudes measured by Waltman (1990), namely continuing care for bereaved family, together with open communication with dying and general acute care measures of dying. Approach to palliative care requires the development of specific competencies not only related to the patient but also to the family in close relationship with other members of the team (De Vlieger et al., 2004).

The Active Care factor highlights one of the main principles of palliative care: “respect the goals, likes, and choice of the dying person” (Last Acts Task Force on Palliative Care, 1997). The aim of end-of-life care is to maintain a good health-related quality of life: Only informed, supported, and actively involved patients and family could reach this goal. In palliative care, recognition of the value of every person goes through deep consideration of the unique and unrepeatable way each patient deals with the disease and the end of his or her life.

The factors identified in the FATCOD confirm that “nurses’ attitude toward the terminally ill patient does not suppose any technical difficulty, but it is a great human difficulty” (Romàn, Sorribes, & Ezquerro, 2001, p. 339). All six of these dimensions are strictly interrelated and inseparable in clinical practice: Their strength increases when viewed in relation to each other. This facili- tates an operative model that can help nurses to improve their role in pallia- tive care through the development of attitudes toward care of terminally ill patients. The contents related to these six factors should be included in every core curriculum, from basic education to master’s programs, as suggested by the Guide on the Development of Palliative Nurse Education in Europe (De Vlieger et al., 2004).

Limitations

It was not possible to compare the results of our factor analysis with previous published studies that used the FATCOD because, to our knowledge, this was the first time a factor analysis was performed on it. Similarly, it was impos- sible to evaluate the convergent validity of the FATCOD because no other Italian validated instrument was available for measuring attitudes toward care

240 OMEGA—Journal of Death and Dying 70(3)

of dying patients, in particular for nursing students. Moreover, in this study, the FATCOD Form B-I was used and psychometrically tested only with a conveni- ence sample of nursing students, even if it has been developed in order to be used with students of other disciplines also. Further studies might extend its use.

Conclusion

The number of patients with chronic diseases who require palliative care is increasing worldwide. The education of every health-care professional should include programs aimed at improving specific competences for continuous and global care to terminally ill patients in order to achieve the best possible quality of life even during their last days. Attitudes play a key role in competence development because of their impact on care quality. The measurement and the development of student’s attitudes toward care of dying patients are funda- mental to achieve effective education results.

FATCOD Form B-I, the Italian version, is a valid and reliable tool that measures six specific dimensions: Fear/Malaise, The Care of the Family, Communication, Family as Caring, Relationship, and Active Care. These should be highlighted during nursing students’ education

The validity and acceptability of FATCOD Form B-I, Italian version, encourage its use in training programs to improve attitudes and knowledge in palliative care in academic courses and in health-care professional post-aca- demic training.

This instrument can be incorporated into pre- and posttests of educational programs to allow a systematic evaluation of their efficacy in changing nurses or nursing students’ attitudes. The study of the attitudes can facilitate the definition of aim and contents of the training courses; it can also help to understand the importance of emotional components in the quality of the caring process that every health-care professional uses with the patients and their family members. It could be a useful tool to define the best strategies for health-care professionals working in palliative care. It could be used in research on the influences of some variables (like socio-demographic conditions, religious beliefs, or experience of grieving) toward attitudes and knowledge about death. The correlation of FATCOD’s six factors with some variables defined in previous study (age, level of education, sex, region, previous experience with terminally ill patients, etc.) as predictive elements for the development of positive attitudes toward care of dying patients among nursing students could highlight areas of educational need and could help educators to understand how they can improve attitudes and competences in palliative care. The use of FATCOD Form B-I, as the first valid tool in Italy, could contribute to the development of other measures of attitudes culturally relevant to the Italian context.

Mastroianni et al. 241

Appendix 1

FATCOD B-I

FROMMELT ATTITUDES TOWARD CARE OF THE DYING SCALE

Nome Cognome____________________________________________________

Lo scopo di queste domande è di capire come il personale che assiste un malato terminale si sente rispetto ad alcune situazioni in cui è coinvolto. Tutte le afferma- zioni riguardano l’assistenza al malato terminale e alla sua famiglia. Quando si parla di una persona che sta morendo, è da considerare riferito a un malato terminale che ha 6 mesi o meno di aspettativa di vita.

Per favore, segna accanto ad ognuna delle affermazioni di seguito elencate un punteggio (da 1 a 5) che corrisponda alle tue sensazioni personali riguardo all’at- teggiamento o alla situazione presentata. Per favore rispondi a tutte e 30 le affermazioni.

Ti chiediamo di compilare il questionario che segue. La restituzione di questo modulo esprime il tuo consenso a partecipare ad uno studio sulle attitudini degli

A¼ sono fortemente contrario B¼ sono contrario C¼ non so D¼ sono d’accordo E¼ sono decisamente d’accordo 1. L’assistenza ad un paziente terminale è un’esperienza formativa utile

2. La morte non è la cosa peggiore che può succedere ad una persona

3. Mi sentirei a disagio a parlare con il paziente terminale della sua morte imminente

4. L’assistenza alla famiglia del paziente dovrebbe continuare durante tutto il periodo del

lutto e della sua elaborazione

5. Non vorrei assistere un paziente terminale

6. Il personale che assiste un paziente terminale non dovrebbe essere colui che gli parla

della morte

7. Per me potrebbe essere frustrante il tempo dedicato all’assistenza di un paziente

terminale

8. Mi sentirei sconvolto se il paziente terminale che assisto perdesse ogni speranza di

sentirsi meglio

9. E’ difficile stabilire una stretta relazione con il paziente terminale

10. Ci sono momenti in cui il paziente terminale si augura di morire

11. Quando un paziente chiede “Sto morendo?” penso sia meglio cambiare discorso con

qualcosa di più allegro

12. La famiglia di un paziente terminale dovrebbe essere coinvolta nella cura dei bisogni

fisici del proprio caro (per esempio: cura dell’alimentazione e dell’igiene personale)

(continued)

242 OMEGA—Journal of Death and Dying 70(3)

studenti riguardo l’assistenza ad un malato terminale condotto da Antea Formad. Il questionario è anonimo. Grazie per il tuo contributo

Continued

13. Spero che la persona di cui mi sto prendendo cura, muoia quando io non ci sono

14. Ho paura di diventare amico di una persona che sta morendo

15. Vorrei fuggire via quando il paziente sta per morire

16. Le famiglie necessitano di un sostegno psicologico per accettare i cambiamenti di

umore e comportamentali del paziente terminale

17. Nel momento in cui il paziente si avvicina alla morte, il personale che lo assiste

dovrebbe distaccarsi emotivamente

18. Le famiglie dovrebbero aiutare il proprio caro rendendo la vita che gli resta, la migliore

possibile

19. Il paziente terminale non dovrebbe prendere decisioni sulla cura dei suoi bisogni fisici

(cura dell’alimentazione, dell’igiene personale ecc.)

20. Le famiglie di un paziente terminale dovrebbero mantenere l’ambiente del proprio

caro il più normale possibile

21. Il paziente terminale trae beneficio nel parlare delle proprie emozioni

22. L’assistenza dovrebbe essere estesa anche alla famiglia del paziente terminale

23. Il personale che assiste un malato terminale dovrebbe consentirgli di avere un pro-

gramma flessibile di visite

24. Il paziente terminale e la sua famiglia dovrebbero essere coloro che prendono

decisioni

25. La dipendenza dai farmaci antidolorifici non deve preoccupare quando il paziente è in

fase terminale

26. Mi sentirei a disagio se, entrando nella stanza di un paziente terminale, lo trovassi a

piangere

27. Al paziente terminale bisognerebbe dare risposte sincere circa le sue condizioni

28. Preparare le famiglie alla morte e al morire non è responsabilità del personale che

assiste il paziente

29. I familiari che sono vicini al paziente terminale spesso interferiscono con il lavoro degli

operatori sanitari

30. Il personale di assistenza può aiutare i pazienti a prepararsi alla morte (aiutare a

portare a termine atti per lui importanti, aiutare a compiere riti religiosi o a pregare

secondo il suo culto ecc.)

Mastroianni et al. 243

Appendix 2

Form B

Frommelt Attitude Toward Care of the Dying Scale In these items, the purpose is to learn how non-family caregivers feel about

certain situations in which they are involved with patients. All statements con- cern the giving of care to the dying person and his or her family. Where there is reference to a dying patient, assume it to refer to a person who is considered to be terminally ill and to have six months or less to live.

Please circle the letter following each statement which corresponds to your own personal feelings about the attitude or situation presented. Please respond to all 30 statements on the scale. The meaning of the letters is:

SD¼ Strongly Disagree; D¼Disagree; U¼Uncertain; A¼Agree; SA¼ Strongly Agree

1. Giving care to the dying person is a worthwhile experience. SD D U A SA

2. Death is not the worst thing that can happen to a person. SD D U A SA

3. I would be uncomfortable talking about impending death with the dying person. SD D U A SA

4. Caring for the patient’s family should continue throughout the period of grief and bereavement. SD D U A SA

5. I would not want to care for a dying person. SD D U A SA

6. The non-family caregivers should not be the one to talk about death with the dying person. SD D U A SA

7. The length of time required to give care to a dying person would frustrate me. SD D U A SA

8. I would be upset when the dying person I was caring for gave up hope of getting better. SD D U A SA

9. It is difficult to form a close relationship with the dying person. SD D U A SA

10. There are times when death is welcomed by the dying person. SD D U A SA

244 OMEGA—Journal of Death and Dying 70(3)

11. When a patient asks, “Am I dying?” I think it is best to change the subject to something cheerful. SD D U A SA

12. The family should be involved in the physical care of the dying person. SD D U A SA

13. I would hope the person I’m caring for dies when I am not present. SD D U A SA

14. I am afraid to become friends with a dying person. SD D U A SA

15. I would feel like running away when the person actually died. SD D U A SA

16. Families need emotional support to accept the behavior changes of the dying person. SD D U A SA

17. As a patient nears death, the non-family caregiver should withdraw from his or her involvement with the patient. SD D U A SA

18. Families should be concerned about helping their dying member make the best of his or her remaining life. SD D U A SA

19. The dying person should not be allowed to make decisions about his or her physical care. SD D U A SA

20. Families should maintain as normal an environment as possible for their dying member. SD D U A SA

21. It is beneficial for the dying person to verbalize his or her feelings. SD D U A SA

22. Care should extend to the family of the dying person. SD D U A SA

23. Caregivers should permit dying persons to have flexible visiting schedules. SD D U A SA

24. The dying person and his or her family should be the in-charge decision makers. SD D U A SA

25. Addiction to pain relieving medication should not be a concern when deal- ing with a dying person. SD D U A SA

26. I would be uncomfortable if I entered the room of a terminally ill person and found him or her crying. SD D U A SA

27. Dying persons should be given honest answers about their condition. SD D U A SA

Mastroianni et al. 245

28. Educating families about death and dying is not a non-family caregiver’s responsibility. SD D U A SA

29. Family members who stay close to a dying person often interfere with the professional’s job with the patient. SD D U A SA

30. It is possible for non-family caregivers to help patients prepare for death. SD D U A SA

*Non-family caregiver is defined as anyone who is giving care to the dying person, professional or non-professional, who is not a member of the patient’s family.

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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Author Biographies

Chiara Mastroianni, RN, MSc, PhD student, is a nurse with extensive experience in palliative care. She is president of Antea Formad (school of training and research in palliative care) and author of national and international publications in the field of Palliative Care and Pain Therapy. She teaches palliative care in the nursing degree program at the University La Sapienza, Catholic University of the Sacred Heart and at Tor Vergata University of Rome. She is a teacher and member of the scientific committee of the master in palliative care at Campus Bio-Medico di Roma University, Sapienza University and Tor Vergata University of Rome.

Michela Piredda, BSc, MSc, RN, PhD, is a nurse with extensive experience in oncology and palliative care, a Master in Nursing Research (University of London) and Doctoral Degree (Tor Vergata University, Rome - European Label). She works at the Research Unit in Nursing Science at Campus Bio- Medico di Roma University (Italy), and is the author of many scientific national and international publications on oncology, palliative care and on instrument psychometric testing.

Chiara Taboga, RN, is an experienced nurse in palliative care and nursing man- agement, and author of national and international publications. Currently she works in home care at Udine (Italy).

Fiorino Mirabella, BS, has a Bachelor Degree in Experimental Psychology at Sapienza University Rome. He has a position as researcher at the Italian National institute of Health, Rome, with a focus on psychometric testing.

Elisabetta Marfoli, Med, RN, PhD, is a nurse with extensive experience in cardiology care and specifically in the CathLab for patients with myocardical infarction. She has Degree in Pedagogy at RomaTre University, Italy; PhD in Bioethics at the Campus Bio-Medico di Roma-Italy. She is a researcher and teacher of health Education at the Campus Bio-Medico di Roma -Italy and General Pedagogy at Tor Vergata University, Rome-Italy.

Giuseppe Casale, MD, PhD, is an oncologist and gastroenterologist. He founded the Antea Association, a palliative care service in Rome (Italy) of which he is currently Health and Scientific coordinator. Teacher of Educational Courses and Master in Palliative Care, he participated in numerous national and inter- national research projects and is author of many publications on palliative and pain topics.

Mastroianni et al. 249

Maria Matarese, RN, MSc, is Assistant Professor at the Research Unit in Nursing Science at Campus Bio-Medico di Roma University (Italy). She is author of numerous scientific publications, among which several studies for psychometric testing of instruments.

Katherine H. Murray Frommelt, PhD, RN, FT, was one of the founders of the Hospice of Dubuque and Full Professor and Chairperson of the Department of Nursing and Health at Clarke University. She retired from Clarke as a Professor Emeritus after 19 years of service. Dr. Frommelt was Fellow in Thanatology for her years of work in teaching and research in death, dying, grief and bereave- ment. She is also the author of the Frommelt Attitude Toward Care of the Dying Scale (FATCOD), forms A & B, which have been used for research in the field of Thanatology in over 300 colleges, universities, and health care institutions in the USA and throughout the world and was translated into 37 languages for research and education.

Maria Grazai De Marinis, Med, RN, has a Bachelor in Education and is a Registered Nurse with extensive experience in palliative care. She is full Professor of Nursing and Head of the Research Unit in Nursing Science and of the School of Nursing of Campus Bio-Medico di Roma University and author of many scientific publications. She is Vice-President of the Italian Society of Medical Pedagogy and member of the Italian Society of Palliative Care and of the Working group to define the Core Curriculum in Palliative Care in Italy. She has been expert consulting for Education of Antea Formad pallia- tive care association, and is Director of the Master’s Degree in Oncology and Palliative Care at Campus Bio-Medico di Roma University.

250 OMEGA—Journal of Death and Dying 70(3)

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