Construction and validation of nursing diagnoses for people in palliative care 1

ABSTRACT Objective: to construct and validate nursing diagnoses for people in palliative care based on the Dignity-Conserving Care Model and the International Classification for Nursing Practice. Method: a two-stage methodological study: 1) construction of the database of clinically and culturally relevant terms for the nursing care for people in palliative care and 2) construction of nursing diagnoses from the database of terms, based on the guidelines of the International Council of Nurses. Results: the 262 terms validated constituted a database of terms from which 56 nursing diagnoses were developed. Of these, 33 were validated by a group of 26 experts, and classified in the three categories of the Dignity-Conserving Care Model: illness-related concerns (21); dignity-conserving repertoire (9); and social dignity inventory (3). Conclusion: of the 33 validated diagnoses, 18 of them could be included in the update of the Catalog of the International Classification for Nursing Practice - palliative care for a dignified death. The study contributes to support the clinical reasoning and decision making of the nurse.


Introduction
Care for the person, in the process of dying and facing death, is part of the experience of the health team, especially of Nursing professionals who are continuously present and directly provide the majority of the care to the person. They offer care when healing is no longer a possibility and even provide care for the postmortem body and during mourning (1) .
There is a clear need for health professionals to seek care for the promotion, prevention of injuries and recovery of health, as well as to valorize a dignified death, assuming that death should not be an enemy to be overcome, but a natural event that is integral to life (2) . With this in mind, every day the philosophical principles regarding palliative care have gained strength and space in the care settings.

Palliative care is defined by the World Health
Organization (3) as an approach to care that seeks to Palliative care is, at the same time, a guiding philosophy and guideline for actions to be undertaken by a multidisciplinary health team, structured in an interdisciplinary care system (3) . Its principles can be applied to all patients, in different age groups, and their families, with emphasis on care for the preservation of dignity, and having the relief from suffering as the focus of the care (4) .
The number of palliative care programs has been increasing rapidly in recent years due to the greater amount of people with chronic and life-threatening illnesses, associated with greater involvement of families in the decisions about the end-of-life care for their loved ones (5) .
The participation of the nurse in the palliative care context is essential, considering that this care is performed in an area of health intervention, in which the role of the nurse represents the link between the patient, the family and the other members of the team, with this professional having a greater opportunity to perform care practices, due to spending much of the time with the patient and family (1) .  (6)(7) .
There are different theories and conceptual models that seek to explore the different theoretical models related to dignity, which have been developed in different contexts of clinical practice (8) . For this study, the Dignity-Conserving Care Model (DCCM) (9) was chosen because it is a reference in the context of palliative care, and was already used in the first edition of the ICNP ® Catalog -Palliative Care for Dignified Dying (10) , as well as being the theoretical model that specifically defines "dying with dignity" (11) . The model is composed of the following main categories: illnessrelated concerns; dignity-conserving repertoire and social dignity inventory (9) . This model and the Nursing Diagnoses (NDs) aim to provide a structure for nurses to plan an individualized approach directed toward conserving the dignity of the person, in the process of dying and facing death.
The present study aimed to contribute to the expansion, consolidation and updating of the existing Catalog (10) , published in 2009 by the International Council of Nurses (ICN), and developed from studies conducted in Ethiopia, Kenya, India, the Philippines and the USA (11)(12)(13) .
The results of this study contribute to filling gaps related to the relevant NDs in the context of palliative care, such as the diagnosis of "preserved dignity", which is not part of the ICNP 2011, and is not included in the Catalog (10) . With this, it will be possible to direct interventions in this field of care, in health and nursing, as well as to provide evidence for the practice of the nurse in the context of palliative care, www.eerp.usp.br/rlae 3 Silva RS, Pereira A, Nóbrega MML, Mussi FC.
considering the lack of studies on NDs for palliative care patients (14) . Therefore, the present study aimed to construct and validate NDs for people in palliative care, based on the DCCM (9) and the ICNP ® .

Method
This methodological study used the recommendations of the ICN for the development of terminological subsets (15) , based on the Database of Terms (DT) constructed in the first stage of this study (16) (16) , which resulted in a database of 262 terms, which subsidized the next step. 2) construction of the NDs from the DT (16) , based on the ICN guidelines. This step composed the object of this publication.
The construction of the NDs was operationalized in four different moments: 1) construction of the NDs and their operational definitions; 2) content validation by experts selected according to the Fehring's modified criteria (18) ; 3) application of the Content Validity Index (CVI), being adequate when ≥0.80 and 4) cross-mapping between validated NDs and those in the Catalog (10) .
Following the methodological steps for the construction of the NDs, the diagnoses were initially constructed based on the reference model (17) , which determines that a term of the ICNP ® Seven Axes Model inherent to the focus axis and another to the judgment axis should be mandatorily included. The inclusion of additional terms from the other axes is optional. The theoretical framework of the DCCM (9) was also taken into consideration.
For the development of the operational definitions, the following methodological strategies were used: review of the literature, mapping of the meaning of the concept and affirming the operational definition (19) . For these definitions, the palliative care area of clinical specialty was considered and, for each one, the specific characteristics to guide its identification were established.
After the development of the NDs and their operational definitions, the resulting product was submitted to the content validation process by selected experts, according to Fehring's modified criteria (18) . In this study, the adaptation performed was related to flexibility in the participation of nurses without the Master's degree, provided they had a specialization course or residency with a focus on palliative care.
Studies highlight that Fehring's criteria (18) are still the most used, mainly through adaptations (20) .
The The ND and its respective operational definition were considered relevant when the CVI≥0.80. This score was adopted as the coefficient of reliability, considering that the literature recognizes this as a standard cut-off point as a weighted measurement tool (21) .
Next, the validated NDs (CVI≥0.80) were submitted to the cross-mapping technique (22) , with these being crossed with those included in the Catalog (10) , to identify whether or not they were included. This process took place by typing the NDs into a Microsoft Office Excel ® 2010 worksheet, then importing it into the Microsoft Office Access ® 2010 program, with the cross-mapping technique being used, which made it possible to compare the ND products of this study with those of the Catalog (10) .
Finally, the categorization stage occurred, according to the DCCM (9) , when the NDs were

Results
In the first stage of the study, the terms were identified from the interviews with professionals of the nursing team, which gave a total of 432 terms (16) . Of these, after the process of identification After the evaluation by the experts, of the 56 NDs elaborated, 33 (58.9%) obtained IVC≥0.80 (Table 1).
The 33 NDs were submitted to the cross-mapping technique and then categorized according to the DCCM (9) (Figure 1). When they were crossed with the Catalog (10) it was evident that only 8 of the 33 DEs were in the catalog: spiritual distress, discomfort, hopelessness, pain, fatigue, nausea, impaired respiration and impaired sleep. It should be mentioned that 15 NDs presented in Table 1 are not included in the ICNP ® 2011.   and/or dynamic issues of relationships that increase or diminish the sense of dignity of each person (9) .
Of the terms identified as not included in the ICNP ® , those belonging to the focus axis are highlighted, as they represent the focus of attention for the systematization of nursing care. Of the 95 nonconstant terms, 33 (34.7%) were classified in this axis (16) , and 62 in the other 6 axes of the Seven Axes Model of the ICNP ® .
Among these 33 terms, those inherent to the dignity of the person in palliative care were evidenced, such as: psychological support, moral support, psychospiritual aspect, good death, humanization, respect, responsibility and singularity, among others. The word dignity means to be worthy of honor, respect or esteem (9) . Its concept is considered to be one of the most important professional values, being of great relevance to Nursing, due to the human nature of its professional practice. Hence, caring, considering dignity-conserving care, means respecting the human individuality and treating each person as a unique being, thus becoming a basic human need and an important aspect in nursing care (24) . Therefore, it is necessary to consider the aspects identified in the study as the focus of the nursing care, among them the singularity, respect and moral and psychological support.
The ICN considers palliative care a priority (15) for the development of ICNP ® Catalogs and, from this perspective, recognizes the phenomenon of "dying with dignity" as inherent in the nursing care, as well as adopting the DCCM (9) as a reference for structuring the Catalog (10) . This enables nurses to plan the nursing care taking into account the preservation of human dignity (23) .
The theoretical model adopted in the study specifies three main categories related to the dignity of the person in palliative care. The first is illness- Based on the DCCM (9) , the focus of care, from these 33 terms, is directed toward the two main categories in the context of palliative care: the dignity-conserving repertoire and the social dignity inventory. However, these two categories grouped a smaller number of diagnoses, according to the Catalog (10) and this study.
Dignity is conceived from intrinsic and extrinsic components (9) , the latter being influenced by environmental and cultural circumstances, which tend to impact on the dignity of each person. Therefore, each individual, faced with their condition of illness, responds differently to coping with the situation.
In a randomized clinical trial (25) , developed in New York City with patients in palliative care, the "Dignity Therapy" intervention, a brief psychotherapy, was  (26) , making the relief of anxiety, control of the situation and promotion of quality of life possible.
Other NDs that did not exist in the Catalog (10)  Another point that deserves attention is the fact that an ND in the subtheme "generativity/legacy", of the dignity-conserving repertoire category of the DCCM was not identified in the study, nor is it listed in the Catalog (10) . For the care contents theme, of the social dignity inventory category, there is no diagnosis in the Catalog (10) , however, in this study the "impaired patient/caregiver relationship" was evidenced.  (27) .
The "impaired adaptation to change" ND was classified in the "functional capacity" subtheme, in the illness-related concerns category, considering its operational definition and the concepts of categories and subcategories of the theoretical model. However, in the Catalog, the "impaired adaptation" ND is classified in the theme "maintaining normality", of the "dignityconserving repertoire" category, for which no ND was identified in the present study.
The classification of "impaired adaptation to change" in the "functional capacity" subtheme was guided by its definition in the theoretical model (9) : which refers to the ability to perform activities of daily living such as shopping, bathing and preparing meals, among others.
The "preserved love" ND did not achieve the defined CVI, however, there were pertinent suggestions regarding its modification to "positive self-esteem", which is related to the profile of the adopted model and is already an ND contemplated in the Catalog (10) in the main category of "dignity-conserving repertoire"sub-theme "maintenance of pride". It should be noted that for this subtheme, no diagnosis was evidenced in the present study.
The NDs "risk of injury", "risk of emotional problem", "risk of sadness" and "risk of pressure ulcer" did not achieve CVI≥0.80. The experts did not justify the non-relevance of these NDs, nor offer suggestions for improvements. The index of NDs of risk in the classification systems is still very low.
The question remains regarding why the "risk of sadness" ND did not achieve the desirable CVI, while "chronic sadness", a condition secondary to the diagnosis of potentiality, did.
The results of this study particularly contribute to the updating of the existing catalog, as well as highlight scientific evidence that can be applied in the clinical practice and even be tested through the clinical validity of the NDs and their relationships in the respective categories and subcategories of the DCCM. In addition, the elements of the nursing practice for the promotion of a dignified death were explored from the perspectives of the individuals and their family members.

Conclusion
The 33 NDs validated in this study, and classified in different categories of the DCCM, express a common language for Nursing, aiming to guide the systematized planning of nursing care. They also contribute to the implementation of the Nursing Process and the use of the ICNP ® as an international nursing language system, which aims to support the planning and management of palliative care by the nursing team, in order to promote a dignified death.
A limitation of the present study was the fact that the data were obtained from a database where the information does not allow generalizations, as it demonstrates the profile of a given reality.