Validation of a nursing care protocol for patients undergoing palliative care

Abstract

Objective

To describe the validation process of the content of a nursing care protocol for patients undergoing palliative care and hospitalized in intensive care units.

Methods

This was a cross-sectional, descriptive, methodological study, resulting from the judgment by 11 experts involved in teaching and/or care. The operationalization occurred through the consistency among the answers of the experts obtained by the Content Validity Index in a round.

Results

Fifteen items were assessed: nine corresponding to the nursing history and six related to nursing interventions, presenting a content validity index of 0.9 to 1.0. Of the 165 answers, 67.27% were considered appropriate, 30.91% were appropriate with alterations, and only 1.82% were deemed inappropriate. Such results confirm the validity of content according to the assessment by the experts.

Conclusion

The nursing care protocol for patients undergoing palliative care, hospitalized in intensive care units, proved to be valid and applicable in the clinical practice.

Nursing assessment; Palliative care; Hospice and palliative care nursing; Ethics, nursing; Nursing care

Resumo

Objetivo

Descrever o processo de validação de conteúdo de protocolo assistencial de enfermagem para pacientes em cuidados paliativos internados em Unidades de Terapia Intensiva.

Métodos

Trata-se de um estudo transversal, descritivo, do tipo metodológico. Resultado do julgamento de 11 experts envolvidos na assistência e/ou docência. A operacionalização ocorreu por meio da concordância entre as respostas dos juízes obtidas pelo Índice de Validade de Conteúdo em uma rodada.

Resultados

Foram avaliados 15 itens, nove correspondentes ao histórico de enfermagem e seis referentes às intervenções de enfermagem, os quais apresentaram índice de validade de conteúdo de 0,9 a 1,0. Das 165 respostas, 67,27% mostraram-se adequados; 30,91% adequados com alterações e somente 1,82% foram considerados inadequados, resultados que atestam a validade de conteúdo segundo a avaliação dos juízes.

Conclusão

O protocolo assistencial de enfermagem para pacientes em cuidados paliativos internados em Unidades de Terapia Intensiva se mostrou válido e aplicável na prática clínica.

Avaliação em enfermagem; Cuidados paliativos; Enfermagem de cuidados paliativos na terminalidade da vida; Ética em enfermagem; Cuidados de enfermagem

Introduction

Death and the process of dying permeates human life, especially the lives of care nurses working in intensive care units facing situations of coping with death in their professional practice routine.

Although everyone is aware of its inevitability, the concept of death is a theme that is usually avoided, as it is not easily discussed in modern society. The awareness of their own finitude is experienced with affliction by those who work with the terminally ill. However, the theme has not always been seen that way; in the Middle Ages it was approached within the family sphere without any drama or eloquence. With therapeutic advances and the incorporation of healthcare technologies, death began to be seen as a taboo, favoring a detachment from the family environment in favor of the hospital environment.(¹)

Increased survival has also generated a significant number of patients hospitalized in ICUs and, as a result, a higher experience of nursing professionals in the terminality process. Thus, palliative care, which uses advanced communication skills in order to ease the pain and the psychic and spiritual suffering, are implemented in order to individualize the provided care and organize the care in high complexity environments.(²)

From the need to establish criteria to guide the nursing care during the death and dying processes, the elaboration and validation of a nursing care protocol have been carried out to deal with patients undergoing palliative care.

The use of care protocols for patients in the final stage of life is of paramount importance, as these protocols systematize nursing care.(³) Thus this study approaches the development of an instrument that is capable of systematizing this care in order to get more effective results, with a view to the consistency of the actions at the final stage of life so that a more human, high quality care is provided. Furthermore, the scarcity of these valid protocols leads to a need for validation before implementation in order to imply the reliability of the items of the instrument, which become valuable resources for further studies on the theme.

Therefore, this study’s goal was to describe the validation process of nursing care protocol content for patients undergoing palliative care who were hospitalized in ICUs.

Methods

This was a cross-sectional, descriptive, methodological study with a quantitative approach to validate nursing care protocol content in order to optimize the nursing care to patients undergoing palliative care who were hospitalized in ICUs.

Content validation is a process consisting of two stages.(⁴) In the present study, the first stage consisted of the elaboration of the care protocol considering a nursing history and the interventions listed according to the human dimensions guided by the Nursing Interventions Classification (NIC) in order to standardize the terminology of the actions from the integrative review. The second stage is content validation, which was conducted through the protocol assessment by experts.

The items included in the nursing history were: identification; level of consciousness; ventilation and hydration; bladder elimination; hydrous balance; intestinal elimination; body hygiene; and dressings. In Nursing Interventions they are divided into the following dimensions: biological (control of pain and respiratory symptoms, nausea and vomiting, diarrhea and constipation, delirium, and dementia); psychological (identification of the Kübler-Ross stages and psychological care); social (support to patient and family members); and spiritual (spiritual support); as well as the interventions for terminal illnesses and postmortem care.

Expert assisting nurses from the ICUs of hospitals in the city of Natal-RN and professors from major Brazilian universities were selected. The identification of these experts occurred through the websites of the higher education institutions and the Plataforma Lattes of the Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq).

The sampling was chosen by intentional method in accordance with the following adapted criteria based on the scoring system proposed by Fehring, namely: title of master of science in nursing; master’s thesis involving the terminality process; works published; and participation in groups and/or research projects involving the theme scoring 1 point. Also, the title of doctor of nursing practice; a doctoral dissertation; professor of the nursing course in the areas of bioethics and terminality; professional experience scoring 2 points; and nurses presenting scores equal to or higher than 5 points were considered to make up the sample.(⁵,⁶)

After the selection, the experts were approached via e-mail. An invitation letter was sent, with emphasis on the justification and aim of the study, the legal opinions of a research ethics committee, and the free and informed consent form to be signed in case of acceptance. Upon delivery of the duly signed consent form, the care protocol and the protocol analysis instrument were also sent via e-mail. Twenty-eight expert nurses were located, including masters and doctors; 11 returned the protocol fully analyzed and assessed. The others were removed from the process of validation for not returning the instrument analyzed within the time limit (30 days) or due to incomplete analysis.

All 11 nurses assessed all of the items corresponding to the nursing history and nursing interventions. The experts analyzed the care protocol within the period from September to October 2014 considering relevance, consistency, clarity, objectivity, simplicity, practicality, modernity, and using an accurate vocabulary that prevents ambiguities.

The instrument was reformulated based on the following criteria: suggestions with more than 50% of the experts in the blocks Nursing History and Nursing Interventions; and corroboration with the literature through evidence from the integrative review.

Consistency between the answers of the experts was obtained through the Content Validity Index (IVC), which enables every item of the instrument to be assessed for a subsequent assessment of the entirety. As a widely used method in the area of health, the IVC points out that the main focus of the content validation is to determine whether the items listed in the protocol present adequacy of the content. A minimum of six experts is recommended for this calculation, as well as a concordance rate of not less than 0.78.(⁴) The assessment by each expert was compared to the assessment by the others, calculating the IVC for each pair of experts (Expert 1 x Expert 2; Expert 1 x Expert 3; Expert 2 x Expert 3, and so on).(⁷)

A database in .xlsx format was developed to statistically process the data, and Excel 2010 and the statistical software SPSS (Statistical Package for Social Science) version 20.0 were used to develop the tables and charts. In relation to the analysis of each eligible item to make up the care protocol throughout the study, it was possible to remove and/or change some items according to the adaptations suggested by the evaluators; therefore, a criterion of 50% of the observations among them was established in addition to the findings of the review.

The development of the study met the national and international standards for ethics in research involving human beings, and was approved by the Certificado de Apresentação e Apreciação Ética (CAAE): 33913514.9.0000.5537.

Results

Eleven nurses participated as experts. Most (81.82%) were female, with a mean age of 36.64 years (standard deviation of 8.51). In their variable training, most of them presented a maximum degree of expert (45.46%), a minimum working time of two years and a maximum of 35 years (mean of 11.91 and standard deviation of 8.95).

Of the 15 assessed items, table 1 shows the values obtained through the calculation of the IVC. The 11 experts are represented by numbers (1 to 11); the intersection of the abscissa with the ordered lines exposes the value corresponding to the index of agreement between them, in which a favorable correlation with the content validity is evidenced. Only Experts 1, 3, and 9 presented adverse answers to the validation of the item “state of consciousness.”

Tabela 1
Content validity analysis of the items of the care protocol proposed by the study

IVC	Expert 1	Expert 2	Expert 3	Expert 4	Expert 5	Expert 6	Expert 7	Expert 8	Expert 9	Expert 10	Expert 11
Expert 1	-	0.9	0.9	0.9	0.9	0.9	0.9	0.9	0.9	0.9	0.9
Expert 2		-	0.9	1	1	1	1	1	0.9	1	1
Expert 3			-	0.9	0.9	0.9	0.9	0.9	0.9	0.9	0.9
Expert 4				-	1	1	1	1	0.9	1	1
Expert 5					-	1	1	1	0.9	1	1
Expert 6						-	1	1	0.9	1	1
Expert 7							-	1	0.9	1	1
Expert 8								-	0.9	1	1
Expert 9									-	0.9	0.9
Expert 10										-	1
Expert 11											-

• IVC - Content Validity Index

By applying the aforementioned IVC formula, the estimated value of 0.9 was obtained for this study.

Table 2 shows the percentage of agreement between the experts in relation to the classification and their respective absolute frequencies. Illustratively, the above table shows the percentage of answers provided by the experts. There were a total of 165 answers, of which 67.27% of the assessed items were deemed appropriate, and only 1.82% were assessed as inappropriate; the item “state of consciousness” was removed from the instrument.

Table 2
Classification in relation to the level of agreement between the experts in the study

Classification	n(%)
Appropriate	111(67.27)
Appropriate with change	51(30.91)
Inappropriate	3(1.82)
Total	165(100)

The content validity is represented by table 3 in order to view the classification of the protocol with its respective absolute frequencies in the nursing history and interventions.

Table 3
Items of the care protocol assessed by the experts of the study

Items	Appropriate	Appropriate with change	Inappropriate
	n(%)	n(%)	n(%)
Level of consciousness	9(81.82)	2(18.18)	-
State of consciousness	7(63.64)	1(9.09)	3(27.27)
Ventilation	9(81.82)	2(18.18)	-
Venous access	7(63.64)	4(36.36)	-
Feeding and hydration	9(81.82)	2(18.18)	-
Bladder elimination and hydrous balance	6(54.55)	5(45.45)	-
Bowel elimination	8(72.73)	3(27.27)	-
Body hygiene	7(63.64)	4(36.36)	-
Dressings	6(54.55)	5(45.45)	-
Biological dimension	7(63.64)	4(36.36)	-
Psychological dimension	8(72.73)	3(27.27)	-
Social dimension	7(63.64)	4(36.36)	-
Spiritual dimension	7(63.64)	4(36.36)	-
Intervention in the terminality act	7(63.64)	4(36.36)	-
Postmortem intervention	7(63.64)	4(36.36)	-

In relation to the aspect of the nursing history, table 3 shows that the highest value of agreement was observed in the items level of consciousness, ventilation, feeding, and hydration, with a percentage of 81.82%. Despite a variation between the assessed items, it was observed that the minimum value was 54.55% for adequacy of the protocol, revealing the relevance of the material.

During the reading of the protocol the nurses were instructed to record in their own material the corrections and recommendations they found necessary. From this instruction, the suggestions deemed pertinent were accepted with a view toward improving the proposed protocol. The main suggestions were related to the clarity of the items that could lead to confusion in their implementation by the nursing professional.

State of consciousness was deemed inappropriate by 27.27% of the experts. In terms of changes, this item was added to the item level of consciousness and added to the Palliative Performance Scale (PPS) widely used in palliative care, combined with the Glasgow Coma Scale and the Ramsay Sedation Scale. The other changes involved hydration and administration of drugs in patients in ICUs in the context of palliative care combined with the hypodermoclysis technique. In relation to bladder elimination, the addition of urinary derivations of the types “ureterostomy”, “Bricker”, “urostomy”, and “wet colostomy” were conducted.

In the items corresponding to intestinal elimination, the terms “absent” and “jejunostomy” were added. Following the analysis of observations, the item body hygiene was complemented with “assisted affusion bath”, “non-assisted affusion bath,” and “oral and intimate hygiene.”

Among the variables corresponding to the nursing history, the item “sleep and rest” was added as suggested by an expert based on the fact that this consists of one of the essential needs of patients under palliative care. In this item, characteristics such as “preserved” and “endangered” were added.

It is important to mention that in the aspect of the nursing interventions seven experts (corresponding to 63.64%) agreed that the protocol was appropriate to the biological, social, and spiritual dimensions, as well as the interventions in the terminality act and postmortem care. The psychological dimension presented 72.73% of agreement for adequacy of the instrument among eight experts.

Suggested changes include the need for a higher level of clarity and the exclusion of repeated activities and activities that had no relevance to the protocol. In interventions for pain control, the following items were excluded: “Observing the occurrence of non-verbal indicators of discomfort,” as it had already been covered in the previous number, and “Using measures for control before aggravation,” useless for the protocol.

In relation to the intervention “control of respiratory symptoms,” the need for further clarification in Item 9 was observed as it points out a measure to relieve cough. Similarly, more details in relation to the explanation of the non-pharmacological measure expressed in Item 10 was necessary in the intervention “control of nausea and vomiting.”

For the intervention “fatigue,” the types of activities that may be performed to minimize this discomfort, as well as the use of songs and stimulating massages expressed in Item 9, were added.

In relation to the psychological dimension in psychological care, the present study aimed to adjust the identification of the stages of Kübler-Ross in “signs of denial, anger, bargaining, depression, and acceptance,” registered within 24 hours instead of per shift as in the initial proposal.

In the same intervention the item “actively listening to the patient and requesting the psychological service” was removed from the stages of Kübler-Ross as it is not a component of this stage. Therefore, this item is now part of the first one of the sequences of this intervention.

In the spiritual dimension, there is a detailing of the spiritual resources listed in Item 7, such as “Eucharist”, “anointing of the sick”, “holy water”, “recitation of the rosary”, “prayer”, “anointing oil,” and “fluidic water.”

During the act of terminality only the terms “care with windows”, “surround sound”, and temperature” were added to Item 2. Regarding the intervention “postmortem care,” the inclusion of time of death was necessary, as death is a timely event. One nurse suggested to change Item 7 to “provide support and listening to family members during the period of hospitalization and after burial by means of telephone contact,” and finally an adjustment in the last item (“record the adopted measures in the medical records”) of this intervention proposed by the care protocol (^{Appendix 1}).

Discussion

The results of the content validity analysis obtained through the calculation of the IVC were found to be valid for 67% of the answers analyzed by the experts, as the value of the level of agreement between them was of at least 0.9. This finding corroborates the rate of agreement of not less than 0.78.(⁴) Thus, it is observed that the cutting point was achieved through the verified value.

In relation to the interventions proposed to the protocol, there was a significant level of agreement in the biological, social, and spiritual dimensions, as well as the care in the terminality act and postmortem care, completing the assessment of seven experts of the adequacy of the instrument.

The Palliative Performance Scale (PPS) was added for the adequacy of the care protocol in relation to the assessment of level of consciousness, as it is commonly used in palliative care. In addition to being an excellent instrument of communication between the multidisciplinary team and the patient, the scores of this scale enable the continuous assessment of the functional status of the patient.(⁸)

In relation to hydration and administration of drugs in patients hospitalized in ICUs in the context of palliative care, hypodermoclysis represents an alternative by subcutaneous means; it is safe, effective, and particularly comfortable.(⁹) This technique consists in the infusion of liquids into the hypoderma with a scalp or Jelco catheter of varied diameters ranging between 18G and 27G according to assessment and quantity of subcutaneous tissue in the following regions: scapular, outer thighs, anterolateral abdominal, anterior chest, and anterior arms. It is important to ensure that the volume of liquids does not exceed 3000 ml within the hours and that the solutions are isotonic. Catheter maintenance occurs every four hours, and it may remain in situ for up to 72 hours.(⁹,¹⁰)

The item “sleep and rest” represents an important aspect to be considered before the patient’s terminality, as the change in the sleep-wake pattern directly interferes in the quality of life and comfort of the patient; it is verified through a number of factors, such as environmental factors, that sleep interruptions for examination collections, anxiety, and use of sedatives and painkillers are disruptive. It was also observed that sleep maintenance must be highly stimulated in order to promote quality at the final stage of life, also minimizing stressing events.(¹¹)

In relation to bladder elimination combined with urinary derivations of the types “ureterostomy”, “Bricker”, “urostomy,” and “wet colostomy” in the protocol, it is observed that the use of such ostomies is common, as their use improves the quality of life of patients undergoing palliative care. Wet colostomy, also known as ureterosigmoidostomy, enables the output of urine and feces in the same stoma. Ureteroileostomy or a derivation of Bricker consists in the implementation of ureters in an isolated terminal ileal segment.(¹²)

The presence of integrative and complementary therapies in palliative care is also common. These actions are corroborated by the modalities of acupressure, electroacupuncture, shiatsu, reflexology, aromatherapy, meditation, art therapy, flower therapy, reiki, and therapeutic touch.(¹³)These actions are non-invasive palliative actions that are accepted by patients during this process. A palliative care unit must rely on resources such as psychotherapy, acupuncture, massages, and body relaxation techniques, as well as music therapy.(¹⁰)

In this context the nurse as the professional that is closer to the patients must reflect on the possibilities of care and be able to identify alternatives to provide the best quality of life possible to terminal patients, aiming to improve the physical, mental, and emotional balance of the patient, as well as their well-being.(¹¹)

Limitations of the study include the absence of answers and the devolution of incompletely filled and/or assessed protocols by some experts, as they lead to a reduction in the size of the sample (which was already limited due to the number of professionals who work in the area of palliative care). Furthermore, the short data collection period resulted in the impossibility of conducting other rounds in the validation process, also consisting in a limiting factor of the method.

Despite such difficulties, the importance of this protocol for palliative care nursing is highlighted. In this sense, further studies are necessary to continue the validation process of the instrument in the practice, such as the implementation of the Delphi technique and the clinical validation with the use of the instrument in the intended population.

Conclusion

The nursing care protocol for patients undergoing palliative care who are hospitalized in intensive care units was found to be valid in its content, with potential applicability in clinical practice after the conclusion of other validation studies in order to ensure a more human and high quality care.

Referências

• ¹
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• ²
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• ³
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• ⁴
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• ⁶
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• ⁷
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• ⁸
  Maciel MG, Carvalho RT. [Palliative Performance Scale Pps Versão 2]. Tradução para a língua portuguesa. São Paulo; 2009. Portuguese.
• ⁹
  Takaki CY, Klein GF. [Hipodermóclise: o conhecimento do enfermeiro em unidade de internação]. ConScientia Saúde. 2010; 9(3). Portuguese.
• ¹⁰
  Conselho Regional de Medicina do Estado de São Paulo. Cuidado paliativo. [Coordenação institucional de Reinaldo Ayer de Oliveira]. São Paulo: CRM; 2008.
• ¹¹
  Santana JC, Wenceslau DR, Martins FS, Almeida MF, Costa MM. [Cuidados paliativos nas unidades de terapia intensiva: implicações na assistência de enfermagem]. Enferm Rev. 2012; 16(3):327-43. Portuguese.
• ¹²
  Queiroz FL, Barbosa-Silva T, Costa LM, Côrtes BJ, Figueiredo JA, Campos MH, et al. Double-barrelled wet colostomy with simultaneous urinary and faecal diversion: results in 9 patients and review of the literature. Int J Colorectal Dis. 2006; 8(4):353-9.
• ¹³
  Caires JS, Andrade TA, Amaral JB, Calasans MT, Rocha MD. [A utilização das terapias complementares nos cuidados paliativos: benefícios e finalidades] Cogitare Enferm. 2014; 19(3):514-20. Portuguese.

Anexx 1 Nursing care protocol for patients undergoing palliative care

Parte I
Nursing history

Parte II
Nursing interventions during terminality

Publication Dates

• Publication in this collection
  Jul-Aug 2016

History

• Received
  18 Aug 2015
• Accepted
  8 Sept 2016