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Clinical Validation of the Nursing Diagnosis Spiritual Distress in Cancer Patients Undergoing Chemotherapy Sílvia Caldeira, PhD, MSC, Fiona Timmins, PhD, MSC, MA, FFNRCSI, BNS, BSc Health and Soc (Open), RNT RGN, Emília Campos de Carvalho, PhD, MSC, and Margarida Vieira, PhD, MSC Sílvia Caldeira, PhD, MSC, is a Research Fellow at the School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland and an Assistant Professor and Researcher at the Centre for Interdisciplinary Research in Health at the Catholic University of Portugal, Lisbon, Portugal, Fiona Timmins, PhD, MSC, MA, FFNRCSI, BNS, BSc Health and Soc (Open), RNT RGN, is an Associate Professor at School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland, Emília Campos de Carvalho, PhD, MSC, is a Full Professor at Nursing School Ribeirão Preto University of São Paulo-Ribeirão Preto- College of Nursing, São Paulo, Brazil, Margarida Vieira, PhD, MSC, is an Associate Professor, Researcher at the Centre for Interdisciplinary Research in Health and Associate Dean at the Instituto de Ciências da Saúde, Universidade Católica Portuguesa, Porto, Portugal

Search terms: Nursing, nursing diagnosis, spirituality, validation study

Descritores: Enfermagem, Diagnóstico de Enfermagem, Espiritualidade, Estudos de Validação Author contact: [email protected], with a copy to the Editor: [email protected] Authors’ role in the preparation of the manuscript: Conception and design of the work, acquisition of data, or analysis and interpretation of data (SC, ECC, MV). Drafting the article or revising it critically for important intellectual content (SC, FT). Final approval of the version to be published (FT, ECC, MV).

OBJECTIVE: Validate the nursing diagnosis spiritual distress in cancer patients. METHODS: Cross-sectional approach using Richard Fehring’s Clinical Diagnostic Validity Model. FINDINGS: The prevalence of diagnosis was 40.8% in a sample of 170 patients. A total of 16 defining characteristics were validated. Expresses suffering had the highest sensitivity value and lack of meaning in life had the highest specificity value. CONCLUSIONS: The diagnosis was validated. Cancer patients in spiritual distress are in a state of suffering related to lack of meaning in life. IMPLICATIONS FOR PRACTICE: Sensitive diagnosis tools and language are required for nurses to make accurate judgments in situations of spiritual distress. Validation in different contexts would increase the clinical evidence of this diagnosis. OBJETIVO: Validar o diagnóstico de enfermagem angústia espiritual em pacientes com cancro. MÉTODOS: Estudo transversal, segundo o modelo de validação clínica de Richard Fehring. RESULTADOS: A prevalência foi de 40.8% em 170 pacientes. Um total de 16 características definidoras foram validadas. Expressa sofrimento obteve valor mais elevado de sensibilidade e falta de sentido na vida obteve valor mais elevado de especificidade. CONCLUSÕES: O diagnóstico foi validado e os pacientes com cancro em angústia espiritual estão em estado de sofrimento relacionado com a falta de sentido na vida.

© 2015 NANDA International, Inc. International Journal of Nursing Knowledge Volume ••, No. ••, •• 2015

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Clinical Validation of the Nursing Diagnosis Spiritual Distress

S. Caldeira et al.

IMPLICAÇÕES PARA A PRÁTICA: São necessários linguagens e instrumentos de diagnóstico sensíveis que ajudem os enfermeiros a diagnosticar com acurácia em situações de angústia espiritual. Estudos de validação em diferentes contextos, incluindo a validação diferencial, poderão melhorar a evidência científica do diagnóstico.

Introduction Cancer is a chronic disease that is threatening to life and affects all dimensions of the patients. They are confronted with their own mortality, and this brings questions about the meaning of life, distress, fear, and suffering (Edwards, Pang, Shiu, & Chan, 2010; Oh & Kim, 2014; Pearse, Coan, Herndon, Koenig, & Abernethy, 2012; Roecklein, 2012). Questions about the meaning of life have been described as the core of spiritual experience (Clarke, 2006; Sessana, Finnell, & Jezewski, 2007; Vashon, 2008; Weathers, McCarthy, & Coffey, 2015), and spiritual needs are common expressions when patients face life-threatening illness, suffering, or death (Hermann, 2001; Nixon, Narayanasamy, & Penny, 2013; Ross & Austin, 2015). It is well recognized that cancer patients often express spiritual needs, and it is expected that nurses assess these and provide adequate and effective interventions to promote spiritual well-being (Hsiao, Meei-Ling, Ingleton, Ryan, & Shih, 2011; Taylor, 2003, 2006; Van Leeuwen, Schep-Akkerman, & Laarhoven, 2013). Particularly in these two phases of the nursing process, that is, the assessment and intervention, nurses use clinical reasoning regarding patients’ responses to health or life conditions. And patients’ responses are the core attributes of nursing diagnosis definition of NANDA-I (Herdman & Kamitsuru, 2014). Nevertheless, the spiritual responses or spirituality of patients are dimensions of care considered neglected and often associated to several barriers. The most frequently recognized barriers are the subjectivity of the spiritual dimension and spirituality concept, the lack of educational preparation, the reductionist perspective of spirituality into religiousness or death, the lack of time to provide spiritual care, and some preconceptions about spirituality being integrated as a scientific topic (Balboni et al., 2014; Keall, Clayton, & Butow, 2014). Research about spirituality in health and nursing is an emergent area, which is getting significant expression in scientific publication internationally (Cockell & McSherry, 2012; Koenig, 2011; Ross, 2006), and research about the prevalence of spiritual distress was recently considered a priority in palliative care after an international survey (Selman, Young, Vermandere, Stirling, & Leget, 2014). Despite this, only one clinical validation study about the clinical validation of nursing diagnosis, spiritual distress (00066), has been published (Chaves, Carvalho, Terra, & Souza, 2010). This diagnosis has been integrated within the NANDA-I taxonomy since 1978, was revised in 2002, and is classified at the domain 10—life principles in taxonomy II. Several arguments and proposals have been made to the 2

domain, class, and definition of the diagnosis. Indeed, there have been suggestions to change the diagnosis label spiritual distress to impaired spirituality and also add more attributes of the concept (Chaves et al., 2010). One further recent proposal, accepted by NANDA-I, suggested retaining the diagnosis term spiritual distress but put forward a new definition, included at the last edition of taxonomy II, which include two major attributes of spiritual distress: state of suffering and lack of meaning in life as an alteration of spiritual well-being (Caldeira, Carvalho, & Vieira, 2013). In both papers the authors highlight the importance of clinically validating this nursing diagnosis, and this means using a patient approach. According to Fehring (1987, 1994), a diagnosis is only valid when it is evidence based and capable of withstanding nursing professionals’ criticism. Its characteristics are valid when they truly occur and are identified in clinical situations. In regard to diagnoses related to spirituality, the studies consisted of content validation (Caldeira et al., 2013). The clinical validation of nursing diagnosis is essential to assess the patients’ perspectives and improve clinical evidence (Caldeira, Chaves, Carvalho, & Vieira, 2012; Creason, 2004). This is the first study about clinical validation of nursing diagnosis in cancer patients in Portugal, and the first using this method, this classification, and this diagnosis. The objectives of the study were to clinically validate the defining characteristics of the nursing diagnosis spiritual distress; to calculate the prevalence of the diagnosis in the sample of cancer patients; and to calculate the sensitivity, specificity, and predictive value of the defining characteristics of spiritual distress. Method This is a cross-sectional study, and the data collection was performed from January 2012 to April 2012 in a Portuguese hospital. The Clinical Diagnostic Validity model was chosen for clinical validation of the nursing diagnosis spiritual distress (Fehring, 1987, 1994). Previously, the researchers did a literature review to identify clinical indicators of spiritual distress in literature different from those included in NANDA-I (Caldeira et al., 2013). The context for this clinical validation was chosen according to the results of this review, because the literature about spiritual distress was more frequent in cancer patients. The data collection was performed by a structured interview requiring the completion of a short form composed of five sections: (i) demographic data, (ii) 40 clinical indicators of spiritual distress, (iii) researcher diagnosis, (iv) Spiritual Well-Being

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Clinical Validation of the Nursing Diagnosis Spiritual Distress

Questionnaire, (v) patient’s opinion about spiritual distress. The Fehring’s model (1987) proposes using a measure or scale for the phenomena being validated, and so, a Portuguese version of Spiritual Well-being Questionnaire (SWBQ), validated to Portuguese culture, was selected (Gouveia, Marques, & Pais-Ribeiro, 2009). The SWBQ consists of 20 items that require a response on a 5-point Likert scale and has four dimensions of spiritual well-being (Gomez & Fisher, 2005; Gouveia et al., 2009). The items included concepts broader than religiosity, faith, and death, and the measure was chosen because of the similarity to the dimensions of spiritual distress definition from NANDA-I (connection to self, other, environment, and Superior Being). A total of 40 defining characteristics were listed and each one had the operational definition. Patients were asked to rate each defining characteristic using a twooption answer (yes or no) according to this question: “Are you experiencing the condition described in this (defining characteristic)?” The agreement on the next three conditions was considered the criteria to identify the nursing diagnosis spiritual distress: the diagnosis of the researcher after the interview; the patient’s affirmative answer to the question “Are you in spiritual distress?”; and the score of the SWBQ equal to or lower than three. Kappa value was used to determine the agreement and was considered excellent when greater than 0.75, intermediate if 0.40– 0.75, and poor when below 0.40 (Gordis, 2014). Frequency was calculated for each of the defining characteristics. Those with frequency greater than or equal to 0.80 were considered major; between 0.80 and 0.50 were classified as minor; all defining characteristics with ratios of 0.50 or less were considered irrelevant (Fehring, 1987, 1994). Data were described and summarized through descriptive and inferential statistics using the statistical software SPSS, version 17.0. The level of significance was 5% (p < .05). Sampling and Ethical Considerations This study used a nonprobabilistic and convenience sample of cancer patients under chemotherapy from a Chemotherapy Day Unit in Portugal. The inclusion criteria were cancer patients under chemotherapy (oral or intravenous); older than 18; conscientious and aware about self-identity, space, time, and expressing well-being. The exclusion criteria were patients must have already undergone their first chemotherapy session and not be known to the researcher (the proximity of the first researcher to the institution and region could promote bias). The researcher interviewed the patients while they were at the treatment, providing conditions to guarantee confidentiality and intimacy. Each patient was in a bed or armchair, in an individualized space with curtains. Also, each patient was asked about the need and will to be referred to a mental health nurse, social care, or another healthcare member, after the interview, in the case of spiritual distress or upset. All the nurses and physicians were informed about the presence of

the researcher, the research goals, and inclusion criteria, and collaborated in providing information to the patient as well as in selecting and planning the interviews (e.g., by helping the researcher to schedule the interview relative to the next treatment session). The Ethical Committee of the hospital approved the research. Findings The convenience sample comprised 170 patients (1 missing data on the SWBQ). The mean age was 56.2 years (SD 11.9), and 68.8% were female and 31.2% were male. Most were married (65.3%) and Roman Catholic (95.3%). The majority had the basic education level (45.9%) and 20.6% were not working due to the health condition. Most lived with their spouse and children (32.4%) or just with their spouse (28.8%). The majority of participants (91.2%) were accompanied by relatives to the hospital, and 53.5% had dependents. The three most prevalent cancers were breast (42.4%), bowel (14.7%), and lung (7.1%). The average from cancer diagnosis to the research interview was 24 months, and from first treatment to interview it was 15 months. However, this varied, and for some participants it was more than 10 years since the initial diagnosis. The average in time from interviews lasted between 20 and 90 min, and the mean duration was 42 min. When analyzing the duration of the interviews of patients in spiritual distress, the mean was higher (49.9 min) compared to others (37 min). Identification of the Nursing Diagnosis Spiritual Distress The three criteria were analyzed to identify the nursing diagnosis spiritual distress and the prevalence was 40.8%. A total of 69 patients had the diagnosis spiritual distress and 100 did not have it (Table 1). The Cohen kappa was 0.94 (agreement researcher diagnosis/patients’ opinion). Agreement was found as well between the results of SWBQ and patients’ opinion about spiritual distress. SWBQ average was 2.74 among patients who confirmed to be in spiritual distress and 3.90 among those who denied being in it. Identification of the Defining Characteristics of Spiritual Distress Among the 40 defining characteristics within the form, 16 were validated. Twelve were classified as major, because of an occurrence rate of more than 80%, and four were classified as minor, as their frequency was lower than 80% but still higher than 50% (Table 1). Expresses suffering was the most frequent defining characteristic (98.6%). When analyzing the total of the sample, the defining characteristic expresses suffering was present in 50% of the patients. So, this sample had more patients confirming the defining characteristic expresses suffering than with the diagnosis spiritual distress (40.8%). This means that some of those 3

Clinical Validation of the Nursing Diagnosis Spiritual Distress

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Table 1. Distribution of defining characteristics in cancer patients in spiritual distress Spiritual distress (Researcher*Patient*SWBQ) Yes

No (n = 100)

Classification

Defining characteristics

(n = 69)

Major

Expresses suffering

n 68 67 66 65 65 64 62 61 57 57 57 56 47 41 38 36 34 29 29 28 26 24 20 18 18 16 15 12 12 11 11 10 10 8 6 5 5 1 1 0

Minor

Irrelevant

Anxiety Concerned with family Alienation Crying Questions identity Questions the meaning of life Fear Lack of serenity Insomnia Fatigue Inability to express creativity Questions the meaning of suffering Hopelessness Lack of meaning in life Refuses to interact with significant others Changes in spiritual practices Feeling worthless Expresses grief Lack of acceptance Lack of control Feeling abandoned by God Lack of interest in nature Disinterest in religious activities Lack of courage Expresses guilt Anger Refuses to interact with spiritual leaders Lack of confidence Requests spiritual support Need for forgiveness Inability to pray Anger toward God Lack of love Disinterest for spiritual literature Expresses concern about beliefs and values Questions dignity Expresses being separate from support system Inability to experience transcendence Expresses feeling abandoned

who expressed being in suffering were not in spiritual distress, although the opposite is true. The majority of defining characteristics related to religiosity or spiritual practices were considered irrelevant in this sample (frequency lower than 50%). The total score of the diagnosis in clinical validation was 0.82 and the diagnosis was considered validated (Fehring, 1987). Among the 12 major defining characteristics validated, seven emerged from the integrative literature review and are not listed in NANDA-I (fatigue, crying, insomnia, anxiety, fear, concern for the family, and questions the meaning of life). Fehring’s model consists of calculating the occurrence rate of each defining characteristic. But this information 4

% 98.6 97.1 95.7 94.2 94.2 92.8 89.9 88.4 82.6 82.6 82.6 81.2 68.1 59.4 55.1 52.2 49.3 42.0 42.0 40.6 37.7 34.8 29.0 26.1 26.1 23.2 21.7 17.4 17.4 15.9 15.9 14.5 14.5 11.6 8.7 7.2 7.2 1.4 1.4 0.0

n 16 56 77 13 51 74 42 68 16 46 59 27 19 9 4 10 26 9 8 10 8 3 3 3 5 17 8 13 8 13 15 2 2 6 2 4 6 2 1 0

% 16.0 56.0 77.0 13.0 51.0 74.0 42.0 68.0 16.0 46.0 59.0 27.0 19.0 9.0 4.0 10.0 26.0 9.0 8.0 10.0 8.0 3.0 3.0 3.0 5.0 17.0 8.0 13.0 8.0 13.0 15.0 2.0 2.0 6.0 2.0 4.0 6.0 2.0 1.0 0.0

may be insufficient considering that some defining characteristics were relevant for patients with the diagnosis spiritual distress and for patients without this diagnosis. More statistical tests were needed to clarify which are the most significant defining characteristics in patients with spiritual distress. The sensitivity, specificity, and predictive value contributed to identify true positive and true negative rate. The sensitivity and negative predictive value of all major defining characteristics were higher than 80% (Table 2). Expresses suffering had the highest sensitivity value (98.6%) and highest negative predictive value (98.8%), and this means that when caring for a patient expressing suffering, the nurse should know that there is a high

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Clinical Validation of the Nursing Diagnosis Spiritual Distress

Table 2. Specificity, sensitivity, negative predictive value, and positive predictive value of the defining characteristics Classification

Defining characteristics

Sensitivity %

Specificity %

NPV %

PPV %

Major

Expresses suffering Anxiety Concerned with family Alienation Crying Questions identity Questions the meaning of life Fear Lack of serenity Insomnia Fatigue Inability to express creativity Questions the meaning of suffering Hopelessness Lack of meaning in life Refuses to interact with significant others Changes in spiritual practices Feeling worthless Expresses grief Lack of acceptance Lack of control Feeling abandoned by God Lack of interest in nature Disinterest in religious activities Lack of courage Expresses guilt Anger Refuses to interact with spiritual leaders Lack of confidence Requests spiritual support Need for forgiveness Inability to pray Anger toward God Lack of love Disinterest for spiritual literature Expresses concern about beliefs and values Questions dignity Expresses being separate from support system Inability to experience transcendence Expresses feeling abandoned

98.6 97.1 95.7 94.2 94.2 92.8 89.9 88.4 82.6 82.6 82.6 81.2 68.1 59.4 55.1 52.2 49.3 42.0 42.0 40.6 37.7 29.0 34.8 26.1 26.1 23.2 21.7 17.4 17.4 15.9 15.9 14.5 14.5 11.6 8.7 7.2 7.2 1.4 1.4 0.0

84.0 44.0 23.0 87.0 49.0 26.0 58.0 32.0 54.0 41.0 84.0 73.0 81.0 91.0 96.0 90.0 74.0 92.0 91.0 90.0 92.0 97.0 97.0 95.0 97.0 83.0 92.0 92.0 87.0 87.0 85.0 98.0 98.0 94.0 98.0 96.0 94.0 98.0 99.0 –

98.8 95.7 88.5 95.6 92.5 83.9 89.2 80.0 81.8 77.4 87.5 84.9 78.6 76.5 75.6 73.2 67.9 69.7 69.5 68.7 68.1 66.4 68.3 65.1 65.5 61.0 63.0 61.7 60.4 60.0 59.4 62.4 62.4 60.6 60.9 60.0 59.5 59.0 59.3 –

81.0 54.5 46.2 83.3 56.0 46.4 59.6 47.3 55.3 49.1 78.1 67.5 71.2 82.0 90.5 78.3 56.7 78.4 76.3 73.7 76.5 87.0 88.9 78.3 85.7 48.5 65.2 60.0 48.0 45.8 42.3 83.3 83.3 57.1 75.0 55.6 45.5 33.3 50.0 0.0

Minor

Irrelevant

possibility of being in spiritual distress. Among the four minor defining characteristics, three had the highest specificity, but lack of meaning in life was the most specific (96%) and had the highest positive predictive value (90.5%), and this means that if a patient is not in spiritual distress he would not have this defining characteristic, and so, when a patient expresses a lack of meaning in life, this is strictly related to spiritual distress. Discussion Spirituality is an emerging research theme in nursing in Portugal but lacks clinical evidence that could help nurses’ understanding of spirituality and spiritual diagnoses (Caldeira, Castelo-Branco, & Vieira, 2011). Spiritual care integrates the assessment and diagnosis, and nurses are

expected to provide spiritual interventions (Casarez & Engebretson, 2012). The prevalence of the diagnosis spiritual distress in this study (40.8%) is a reason that spiritual care should be provided. This research concerns cancer patients undergoing chemotherapy; however, spiritual distress is also prevalent in patients with chronic renal disease (Chaves et al., 2010). Even when spiritual distress is not being considered in the context of nursing diagnosis, research confirms that this is still an important phenomenon to patients (Fischbeck et al., 2013; Keall et al., 2014; Monod et al., 2010; Taylor & Mamier, 2013). New defining characteristics were validated, as in a previous validation study in which the authors validated defining characteristics that were not listed (Chaves et al., 2010). This highlights the importance of research about the validation of nursing diagnoses in different populations, as well as the literature 5

Clinical Validation of the Nursing Diagnosis Spiritual Distress review to update the knowledge related to the diagnoses (Caldeira et al., 2012; Creason, 2004; Herdman & Kamitsuru, 2014). The validation of defining characteristics not listed could be also associated to the lack of diagnosis completeness, and this can compromise clinical practice (Von Krogh, 2008). The results from clinical validation studies provide better knowledge for the improvement of the classification while approaching theoretical knowledge to clinical evidence. Additionally, some of these defining characteristics are, themselves, NANDA-I nursing diagnoses (fatigue [00093]; insomnia [00095]; anxiety [00146]; fear [00148]). This highlights a need for clinical differential validation studies to improve the accuracy of each diagnosis and the functionality of the taxonomy, and to provide the most effective interventions (Caldeira et al., 2012; Von Krogh, 2008). In this research, the major and most sensitive defining characteristic (expresses suffering) and the minor and most specific (lack of meaning in life) are coincident to the attributes proposed for the concept of spiritual distress (Caldeira et al., 2013; Herdman & Kamitsuru, 2014). That means expresses suffering is a good test for all patients in spiritual distress and lack of meaning in life was a good test for those not in spiritual distress. Some patients were suffering but not in spiritual distress. Spiritual distress is a state of suffering, but this suffering is related to lack of meaning in life. Viktor Frankl’s (2006) logotherapy is based on the argument that suffering is tolerable when the person is able to find meaning, otherwise, having no meaning, suffering will occur and be distressful. Frankl states that spiritual distress is suffering with no meaning, and when people find meaning in suffering they are able to cope. Other defining characteristics with high rate occurrence and sensitivity were hopelessness and questioning the meaning of suffering, which were also found to be major clinical indicators for spiritual distress in patients with chronic renal disease (Chaves et al., 2010). Finding meaning in illness and suffering could be helpful when patients are coping with serious illness (Molzahn et al., 2012). This is an individual journey, and this deserves an ethical reflection about the nurses’ role in spiritual support. Even when patients are in spiritual distress, they could be provided with adequate resources to deal with the situation and to get meaning in suffering, because of their spiritual development and personal journey and life experience. An individual assessment of spirituality, listening and being present are, sometimes, just all the effective spiritual interventions to be delivered (Oh & Kim, 2014; Ramezani, Ahmadi, Mohammadi, & Kazemnejad, 2014). Hopelessness may occur because when facing serious illness people may question finiteness and, so, no future to believe in (Sachs, Kolva, Pessin, Rosenfeld, & Breitbart, 2013; Taylor, 2012). The prevalence of hopelessness in cancer patients is substantial and related to lower levels of spiritual well-being and spiritual distress (Han et al., 2013; Oztunc, Yesil, Paydas, & Erdogan, 2013; Van Laarhoven et al., 2011). Hopelessness was found to be mutually reinforcing to depression and suffering (Rodin et al., 2009), and in this research it was also a major defining 6

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characteristic in patients in spiritual distress. But, this defining characteristic is also a nursing diagnosis (hopelessness [00124]). This highlights the importance of an accurate diagnosis regarding the effectiveness of the nursing interventions, particularly in this subjective and intimate topic. In a content validation of the nursing diagnosis hopelessness, some defining characteristics were considered ambiguous and not specific enough (Gurková, Ziaková, & Cáp, 2011). Anxiety is an indicator for other clinical situations and was listed as major in patients in spiritual distress. Research has confirmed that spirituality decreases the level of anxiety (McCoubrie & Davies, 2006; Moeini, Taleghani, Mehrabi, & Musarezaie, 2014). Being concerned with family was a major defining characteristic, which has also been described in patients critically ill or in end of life situations often related to the management of the information about the diagnosis or prognosis as well as silence conspiracy which may cause suffering to patients (Bermejo, Villacieros, Carabias, Sanchez, & Diaz-Albo, 2013; Wozniak & Dariusz, 2014). Patients were aware about the changes in family dynamics after the diagnosis and they felt that this situation brought a certain amount of distress to all members. As in previous clinical research, alienation was validated as a major defining characteristic (Chaves et al., 2010) and one of the most frequent in a literature review about the indicators of spiritual distress (Caldeira et al., 2013). The assessment of the defining characteristic crying has confirmed the importance of the interview and the provision of intimacy conditions when approaching the patients, particularly the men. Patients have described they used to cry when they were alone, because they did not feel it was conducive to do it, whether at home or in hospital. At the end of the interviews many patients expressed being grateful for the opportunity to share their feelings. Nevertheless, this was a moment for data collection, and it represented a therapeutic intervention well known in the context of qualitative research (Nelson & Onwuegbuzie, 2013). Crying is a material manifestation of pain but, at the same time, may be a therapeutic process of relief and coping. Providing support when patients cry and allowing them to do it could decrease their distress of feeling unable to cry. Particularly, while in chemotherapy treatments, nurses should promote meaningful time and space for this supportive care. Question identity was not listed in NANDA-I but was a major defining characteristic in patients in spiritual distress (92.8%). This was identified in literature review (Caldeira et al., 2013). Patients related to this when having disturbance in their roles in family and work, because of the preconception about the disease and because of treatment effects as found in previous research (Monod et al., 2010; Morita, Tsunoda, Inoue, & Chihara, 2000). Fear was present in 88.4% of patients in spiritual distress. Patients confirmed this feeling when talking about the fear of suffering in the future, feeling pain, or losing their autonomy. This was validated as an important defining characteristic, which is not listed in NANDA-I. Fear of death was not frequent in patients’ answers, but further

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differential validation studies in regard to fear, death anxiety, and spiritual distress would be valuable to the development of knowledge about these phenomena in nursing care. Lack of serenity, insomnia, and fatigue were also validated as major characteristics. Some caution is needed when analyzing these results, because some effects of chemotherapy or even disease could contribute to increasing the results on these clinical indicators, which are frequent in these patients (Hann, Denniston, & Baker, 2000; Redeker, Lev, & Ruggiero, 2000). Nevertheless, they were most frequent when patients were in spiritual distress. Inability to express creativity is included in NANDA-I and was frequent in patients in spiritual distress. This was a major defining characteristic also in patients under hemodialysis (Chaves et al., 2010). Patients referred to it when talking about the disinterest in doing what they used to do (hobbies, reading, painting, walking, gardening, and being with nature). Also the defining characteristic, lack of interest in nature, was not validated (34.8%), but when present in patients it was highly sensitive (97.0%) and specific (88.%). The majority of these patients were older and came from the countryside of the region. This disinterest in creativity and lack of interest in nature could be a clinical indicator for nurses when working at the same contexts. Refuses to interact with others was a minor defining characteristic, still present in 52.2% of patients in spiritual distress. Patients referred to this in three perspectives. First, they have described it as a deliberate decision because they want to avoid comments about the disease and treatment. Patients felt that they were reduced to disease while talking to others. Second, they said they used to feel a sense of conspiracy of silence that they also decided to avoid being alone. Third, they felt that some people were embarrassed with their presence. Refusing interaction with others could be a decision, but is also a symptom of depression, and so, nurses should pay attention to this when providing care to patients and caregivers. This sample was Catholic, and the defining characteristics related to religious practices or religiosity were not validated and considered irrelevant for the nursing diagnosis spiritual distress. The heritage of nursing care is linked to a reductionist perspective of spirituality as religiosity, but research and knowledge development has given clarification to this argument. Spirituality is broader than religion and so, patients who are agnostic may have spiritual needs in the same way that religious patients may live their spirituality through religiosity and other dimensions. Spirituality and religiosity are distinct but strictly connected (Ramezani et al., 2014; Weathers et al., 2015). Some diagnoses related to religiosity are also included in NANDA-I at domain 10—principles of life (impaired religiosity [00169]; risk for impaired religiosity [00170]) but require clinical validation. Although some defining characteristics of spiritual distress were irrelevant (frequency below 50.0%), considering values higher than 80%, some of those were highly sensitive and specific (sensitivity/specificity): expresses feeling

abandoned by God (97%/87%), inability to pray (98%/ 83.3%), and anger toward God (98%/83.3%). Despite not being considered a major defining characteristic, when patients are religious, these may be good clinical indicators of spiritual distress. Additionally, some of these defining characteristics are not included in the diagnoses related to religiosity, and so, differential validation studies to test them would be relevant for diagnosis accuracy and clinical reasoning. Instead of the average in time from diagnosis to interview (24 months) and the average in time from the first treatment to interview (15 months), defining characteristics lack of acceptance and lack of control were highly sensitive to spiritual distress (respectively, 90% and 92%). When analyzing correlations between these variables, no statistical correlation was found. But, knowing that 40.6% of the patients in spiritual distress confirmed lack of acceptance and 37.7% confirmed lack of control, this may be a relevant data to nursing care in regard to recognizing and supporting grief process. The findings are limited by the nonprobabilistic sample and by the cultural and religious particularities of the region where the research was performed. This is a small region where people know each other quite well and the religious practices of the elderly, women, and Catholic are quite regular. Caution should be applied because some of the defining characteristics are related to relationship with others and religious practices. Because of the ethical considerations, only one researcher performed the collection of the data, and this may have caused a selection bias. Conclusion This study has identified the prevalence of spiritual distress. Sixteen defining characteristics of diagnosis were validated and 28 were classified as irrelevant. The diagnosis was considered validated. The prevalence of spiritual distress confirms nurses will probably find cancer patients in spiritual distress, and they need further development of competencies to provide spiritual care through training programs and education. Two defining characteristics were considered most important (expresses suffering and lack of meaning in life), and these are helpful for clinical reasoning of nurses while caring for patients as well as for education in nursing, since they guide the clinical reasoning on spiritual distress in cancer patients. This study highlights the importance of intimacy for interviews where patients could feel free to express their feelings, appreciate silence about or concealment of their condition, and have adequate rooms to dialogue with confidentiality. Health policies and management leaders should provide these conditions. The time for the interviews with patients in spiritual distress was longer, and probably, patients in spiritual distress would request more time from the nurses. Attention is required of nurses’ managers toward organization of resources. 7

Clinical Validation of the Nursing Diagnosis Spiritual Distress Future clinical validation research needs to explore spiritual distress in other populations with different culture and background, patients who are agnostic, different clinical conditions, and settings. In the future, the meta-analysis of these findings would provide better evidence and contribute to decreasing the number of defining characteristics of spiritual distress in NANDA-I. Longitudinal designs would provide more information about the nursing diagnosis spiritual distress and cause–effect factors. Differential validation studies are required because of the similarity of some diagnoses and because of some defining characteristics that themselves constitute diagnoses. Acknowledgments. The authors gratefully acknowledge use of the services and facilities of the Portuguese hospital and all the patients who participated in this research. This research was supported by CITMA (Centro de Ciência e Tecnologia da Madeira). References Balboni, M., Sullivan, A., Enzinger, A., Epstein-Peterson, Z., Tseng, Y., Mitchell, C., . . . Balboni, T. (2014). Nurse and physician barriers to spiritual care provision at the end of life. Journal of Pain and Symptom Management, 48(3), 400–410. Bermejo, J., Villacieros, M., Carabias, R., Sanchez, E., & Diaz-Albo, B. (2013). Conspiracy of silence in families and patients at the end of life admitted to a palliative care unit: Level of information level and observed attitudes. Medicina Paliativa, 20(2), 49–59. Caldeira, S., Carvalho, E., & Vieira, M. (2013). Spiritual distress—Proposing a new definition and defining characteristics. International Journal of Nursing Knowledge, 24(2), 77–84. Caldeira, S., Castelo-Branco, M., & Vieira, M. (2011). Spirituality in nursing care: A review of scientific publication in Portugal. Referência, 5, 145–152. Caldeira, S., Chaves, E., Carvalho, E., & Vieira, M. (2012). Validation of nursing diagnoses—The differential diagnostic validation model as a strategy. Journal of Nursing UFPE, 6(6), 1441–1445. Casarez, R. L., & Engebretson, J. C. (2012). Ethical issues of incorporating spiritual care into clinical practice. Journal of Clinical Nursing, 21(15–16), 2099–2107. Chaves, E., Carvalho, E., Terra, F., & Souza, L. (2010). Clinical validation of impaired spirituality in patients with chronic renal disease. Revista Latino-Americana de Enfermagem, 18(3), 309–316. Clarke, J. (2006). A discussion paper about “meaning” in the nursing literature on spirituality: An interpretation of meaning as “ultimate concern” using the work of Paul Tillich. International Journal of Nursing Studies, 43(7), 915–921. Cockell, N., & McSherry, W. (2012). Spiritual care in nursing: An overview of published international research. Journal of Nursing Management, 20(8), 958–969. Creason, N. (2004). Clinical validation of nursing diagnoses. International Journal of Nursing Terminologies and Classifications, 15(4), 123–132. Edwards, A., Pang, N., Shiu, V., & Chan, C. (2010). The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: A meta-study of qualitative research. Palliative Medicine, 24(8), 753–770. Fehring, R. (1987). Methods to validate nursing diagnoses. Heart and Lung: The Journal of Critical Care, 16(6), 625–629. Fehring, R. (1994). The Fehring Model. In R. M. Carrol-Johnson & M. Paquette (Eds.), Classification of nursing diagnoses: Proceedings of the tenth conference (pp. 55–62). Philadelphia: Lippincott. Fischbeck, S., Maier, B., Reinholz, U., Nehring, C., Schwab, R., Beutel, M., & Weber, M. (2013). Assessing somatic, psychosocial, and spiritual distress of patients with advanced cancer: Development of the advanced cancer patient’s distress scale. American Journal of Hospice and Palliative Medicine, 30(4), 339–346. Frankl, V. (2006). Man’s search for meaning. Boston: Beacon Press. Gomez, R., & Fisher, J. W. (2005). Item response theory analysis of the spiritual well-being questionnaire. Personality and Individual Differences, 38(5), 1107–1121.

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