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Original Article

Texto & Contexto Enfermagem 2021, v. 30: e20200549

ISSN 1980-265X DOI https://doi.org/10.1590/1980-265X-TCE-2020-0549

HOW CITED: Lourenço TMG, Abreu-Figueiredo RMS, Sá LO. Clinical Validation of The Nanda-I “Caregiver Role Strain”

Nursing Diagnosis in The Context of Palliative Care. Texto Contexto Enferm [Internet]. 2021 [cited YEAR MONTH DAY]

30:e20200549. Available from: https://doi.org/10.1590/1980-265X-TCE-2020-0549

CLINICAL VALIDATION OF THE

NANDA

I “CAREGIVER ROLE STRAIN”

NURSING DIAGNOSIS IN THE

CONTEXT OF PALLIATIVE CARE

Tânia Marlene Gonçalves Lourenço

1,2



Rita Maria de Sousa Abreu-Figueiredo

1,2



Luís Octávio Sá



Escola Superior de Enfermagem São José de Cluny, Gabinete de Investigação e Desenvolvimento Cluny. Funchal, Portugal.

Centro de Investigação em Tecnologias e Serviços de Saúde, Grupo de Investigação: Inovação e Desenvolvimento

em Enfermagem. Porto, Portugal.

Universidade Católica Portuguesa, Centro de Investigação Interdisciplinar em Saúde. Porto, Portugal.

ABSTRACT

Objective: to clinically validate the dening characteristics of the “Caregiver Role Strain” Nursing diagnosis for

caregivers of people in a palliative care situation.

Method: a cross-sectional, quantitative, descriptive and analytical study. It was developed based on Fehring’s

Clinical Validation Model and on the diagnostic accuracy measures (sensitivity, specicity, predictive values

and Receiver Operating Characteristic curve). The data collection instrument used was a form, applied in

2017 by two nurses to a sample of 111 caregivers of people in a palliative care situation, in Portugal. The

caregivers were divided into two groups (with and without the diagnosis), being identied by the simultaneity

of three criteria, namely: Zarit Burden Interview values greater than 56; agreement of two nurses about the

diagnosis; and caregiver’s perception of the presence of signs and symptoms. The dening characteristics

were classied as major, secondary and irrelevant, according to the models used.

Results: the prevalence of diagnosis was 42.3%. Of the 29 characteristics subjected to the validation process,

9 were considered major, 13 secondary and 7 irrelevant. Ineective coping, depressive mood, frustration,

worsening of previous diseases, stress and fatigue were the characteristics which proved to be more associated

with the diagnosis in both analyses. The overall score of the diagnosis was 0.68.

Conclusion: the study results contribute to the improvement of the diagnosis, making it more accurate.

In addition, they enable better clinical decision in Nursing, allowing nurses to make a diagnostic judgment

supported by scientic evidence.

DESCRIPTORS: Caregivers. Palliative care. Psychological stress. Nursing diagnosis. Validation studies.

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VALIDAÇÃO CLÍNICA DO DIAGNÓSTICO DE ENFERMAGEM NANDA-I “TENSÃO

DO PAPEL DE CUIDADOR” EM CONTEXTO DE CUIDADOS PALIATIVOS

RESUMO

Objetivo: validar clinicamente as características denidoras do diagnóstico de enfermagem “Tensão do Papel

de Cuidador da pessoa em situação paliativa”.

Método: estudo do tipo transversal, de natureza quantitativa, descritivo e analítico. Desenrolou-se ancorado no

Modelo de Validação Clínica de Fehring e nas medidas de acurácia diagnóstica (sensibilidade, especicidade,

valores preditivos e curva Receiver Operating Characteristic). O instrumento de coleta de dados utilizado foi

um formulário, aplicado por duas enfermeiras, a uma amostra de 111 cuidadores de pessoas em situação

paliativa, em Portugal, em 2017. Os cuidadores foram divididos em dois grupos (com e sem diagnóstico),

sendo identicados pela simultaneidade de três critérios: valores da escala de sobrecarga do cuidador de Zarit

superiores a 56; concordância de duas enfermeiras acerca do diagnóstico; e a percepção do cuidador quanto

à presença de sinais e sintomas. Classicaram-se as caraterísticas denidoras em principais, secundárias e

irrelevantes, mediante os modelos utilizados.

Resultados: a prevalência do diagnóstico foi de 42,3%. Das 29 características sujeitas ao processo de

validação, 9 foram consideradas principais, 13 secundárias e 7 irrelevantes. O enfrentamento inecaz, o humor

depressivo, a frustração, o agravamento de doenças prévias, o estresse e a fadiga foram as características que

se revelaram mais associadas ao diagnóstico em ambas as análises. O score global do diagnóstico foi de 0,68.

Conclusão: os resultados do estudo contribuem para o aprimoramento do diagnóstico, tornando-o mais

acurado. Ademais, possibilitam melhor decisão clínica em enfermagem, permitindo aos enfermeiros um juízo

diagnóstico apoiado em evidências cientícas.

DESCRITORES: Cuidadores. Cuidados paliativos. Estresse psicológico. Diagnóstico de enfermagem.

Estudos de validação.

VALIDACIÓN CLÍNICA DEL DIAGNÓSTICO DE ENFERMERÍA NANDA-I

“CANSANCIO DEL ROL DE CUIDADOR” EN EL CONTEXTO DE LOS

CUIDADOS PALIATIVOS

RESUMEN

Objetivo: validar clínicamente las características denitorias del diagnóstico de Enfermería “Cansancio del rol

de Cuidador de personas en situación de cuidados paliativos”.

Método: estudio descriptivo y analítico de tipo transversal y naturaleza cuantitativa. Se desarrolló sobre la

base del Modelo de Validación Clínica de Fehring y de las medidas de exactitud diagnóstica (sensibilidad,

especicidad, valores predictivos y curva Receiver Operating Characteristic). El instrumento para la recolección

de dados utilizado fue un formulario, aplicado en el año 2017 por dos enfermeras a una muestra de 111

cuidadores de personas en situación de cuidados paliativos en Portugal. Se dividió a los cuidadores en dos

grupos (con y sin el diagnóstico), identicados por la simultaneidad de tres criterios: valores de la escala

de Zarit de sobrecarga del cuidador superiores a 56; acuerdo de dos enfermeras acerca del diagnóstico;

y percepción del cuidador con respecto a la presencia de señales y síntomas. Las características denitorias

se clasicaron como principales, secundarias e irrelevantes, mediante los modelos utilizados.

Resultados: la prevalencia del diagnóstico fue del 42,3%. De las 29 características sujetas al proceso de

validación, 9 fueron consideradas como principales, 13 como secundarias y 7 como irrelevantes. Afrontamiento

poco ecaz, estado de ánimo depresivo, frustración, deterioro de enfermedades previas, estrés y fatiga fueron

las características que demostraron mayor asociación con el diagnóstico en ambos análisis. El score global

del diagnóstico fue 0,68.

Conclusión: los resultados del estudio son útiles para mejorar el diagnóstico, aumentando su exactitud.

También hacen posible tomar mejores decisiones clínicas en Enfermería, permitiendo así que los enfermeros

tomen determinaciones diagnósticas sobre la base de evidencias cientícas.

DESCRIPTORES: Cuidadores. Cuidados paliativos. Estrés psicológico. Diagnóstico de Enfermería.

Estudios de validación.

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INTRODUCTION

The caregiver has been a privileged research target in the health area, and the negative

impact on their person deserved special attention from researchers

. Aspects related to the caregiver’s

conditions and to the negative impacts of this practice on their own lives have been the object of several

studies nowadays. In these research studies, care recipients are very diverse: older adults

, people with

dementia

3–5

, physical dependence

or cancer

7–8

and people in a palliative care situation

9–10

among others.

Taking care of a family member at the end of life exposes the caregiver to intense experiences

in a context of special vulnerability. Caregivers can experiment feelings of ambivalence, being divided

between deep involvement in care and high strain/stress.

Nurses are always concerned with the caregiver’s well-being, especially in contexts of greater

vulnerability, as is the case with palliative care. Taking care of a caregiver who accompanies a family

member/signicant other at the end of life is challenging, and it is sometimes dicult to diagnose

Caregiver Role Strain. In the practice, it is complex to distinguish between the normal tiredness that

results from caring for a dependent person and the caregiver’s exhaustion. On the other hand, the

clinical indicators associated with this phenomenon are very diverse, hindering its diagnosis and the

consequent implementation of specic Nursing interventions.

The “Caregiver Role Strain” diagnosis is dened in the NANDA International (NANDA-I)

taxonomy as “Diculty in performing responsibilities, expectations and/or care behaviors for family

or signicant others”

11:544

Although this phenomenon has been widely studied, its analysis as a Nursing diagnosis is

scarce. The NANDA-I taxonomy directs us to the use of duly validated Nursing diagnoses, classied

according to the levels of evidence, in consonance with the investigation carried out on each one.

The levels of evidence vary upwards from 1.1 to 3.4. The highest level, 3.4, corresponds to diagnoses

that were validated by means of randomized clinical trials, whose samples allowed the results to be

generalized to the population.

The level of evidence for this diagnosis remains at 2.1, despite being included in the classication

for nearly 28 years. Although it has undergone several changes aimed at improving it, it still maintains

a high number of dening characteristics and related factors, which can hinder its use. In a previous

integrative review, it was found that, although seven validation studies (content/clinical) of the diagnosis

had already been carried out, none of them was conducted among caregivers of patients in need of

palliative care

The main objective of this study was to clinically validate the dening characteristics of the

Caregiver Role Strain Nursing diagnosis for caregivers of people in a palliative care situation.

METHOD

This study was predominantly quantitative, cross-sectional, descriptive and analytical. A

non-probabilistic convenience sample of 111 caregivers of patients referred to the national network

of palliative care in Portugal was used.

The Clinical Diagnostic Validation (CDV) Model for Nursing by Richard Fehring was used,

which essentially consists in obtaining evidence through data from the clinical context

13–14

. Diagnostic

accuracy, which refers to the potential of a test to discriminate between the studied condition and

health, can be quantied through several analysis measures

15–16

. In this study, we used the following

measures: sensitivity (Se), specicity (Sp), positive predictive value (PPV), negative predictive value

(NPV) and area under the ROC curve (AUC)

The data collection instrument was a form, prepared by the researchers, whose construction

process included several phases. Initially, an integrative literature review was carried out, with the

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objective of identifying the dening characteristics (DCs) associated with the diagnosis under study. This

strategy has been used in several research studies of this nature

18–20

. Subsequently, the characteristics

were reformulated and/or grouped to avoid redundancies. In order to elaborate the questions, other

instruments used to assess the same construct were consulted. Finally, a panel of 18 judges was

consulted regarding the relevance, clarity and precision of each item or question

. These judges were

selected according to the following criteria: being specialized in the area under study, having more

than ve years of clinical experience in palliative care or having a PhD/master’s degree in the area.

The data collection instrument consisted of three parts. The rst contained sociodemographic

and care context data. The second presented the list of dening characteristics, with each participant

being asked to inform to what extent each characteristic was indicative of their feelings and/or

behaviors, with ve answer options: nothing characteristic of me (1); very uncharacteristic of me (2);

characteristic in some way (3); quite characteristic (4); and very characteristic (5). Presence of the

dening characteristic was considered when a score ≥ 3 was obtained.

The third part used Zarit’s Caregiver Burden Scale

, validated for the Portuguese population of

family caregivers

. This scale is composed of 22 items with ve possible answers, whose total score is

obtained by the sum of the scores of the items, varying from 22 to 110. A higher score corresponds to

a greater perception of strain, according to the following cuto points: <46=no burden; between 46 and

56=with burden; and >56=intense burden. We obtained a Cronbach’s Alpha of 0.811 for the global scale.

To identify the caregivers diagnosed with Caregiver Role Strain, three criteria were established

(gold standard): Zarit Burden Interview values greater than 56; agreement of two nurses about the

diagnosis (Cohen’s Kappa=81.56%); and the caregiver’s perception regarding the presence of signs

and symptoms of the diagnosis when asked.

It was decided not to previously select clients with the diagnosis, thus avoiding the inuence

of prior knowledge and selection bias

A pre-test was performed with ten caregivers, aiming to validate the instrument and to test

the clarity and understanding of the questions, as well as its organization and mean application time.

The inclusion criteria established in this study were as follows: caregivers (consanguineous

or aective ties) of patients followed-up by a Portuguese palliative care network, aged 18 years old

or over, and who provided care at least twice a week for a minimum period of one month. Caregivers

of children with palliative needs were excluded.

The Nursing diagnosis under study translates a cognitive-aective response, which is why it

was decided to collect the data directly from the participants, as recommended by the author of the

model. The structured interviews were conducted in 2017 by two experienced researchers in the area

of the diagnosis under study, in a private and welcoming environment, in the Inpatient Unit facilities

(n=56) and in the patients’ homes (n=55). It is noted that the patient was never present during the

interviews, but was always informed about the study being conducted, as long as the clinical condition

allowed so. Each interview lasted a mean of 50 minutes, after which debrieng took place, where the

caregiver was asked about the experience of participating in the study. The caregivers who presented

obvious signs of extreme burden were referred to the multidisciplinary team of the palliative care unit.

For data treatment, descriptive and inferential statistics were resorted to, using the Statistical

Package for Social Sciences, version 20.

The criteria to classify the dening characteristics were based on the articulation between the

dierent methods used: Fehring’s model and the diagnostic accuracy measures. The characteristics

that obtained scores ≥ 0.8 were classied as major; and, as secondary, those with scores between

0.5 and 0.7. The characteristics with scores < 0.5 in the CDV are considered irrelevant and, in the

AUC analysis, they presented values that were not statistically signicant.

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This research received a favorable opinion from the Health Ethics Committee of the Autonomous

Region of Madeira, a Public Business Entity. It also observed the participants’ autonomy and right of

refusal, through the free and informed consent. The right to condentiality was respected throughout

the research: an identication number was assigned to each participant, with the research data being

treated anonymously by the researchers.

RESULTS

Regarding the caregivers’ sociodemographic data, their mean age was 50.8 years old

(SD±15.4), where 82.9% were female and 68.5% of the caregivers were married or were living in a

stable relationship. It was found that 26.1% had higher education and that nearly 35.1% had complete

or incomplete compulsory education (up to high school). Regarding their work situation, approximately

half of the sample (50.4%) was not in an active professional situation, being unemployed, retired,

disabled (sick pay) or performing house chores, and nearly 40.5% were employees (with employment).

With regard to the degree of kinship, 31.5% were of a marital nature and 49.5% of a lial nature.

Nearly 22.5% of the caregivers in the sample had minor children. Regarding religion, it was veried

that 83.8% of the caregivers were Catholics, and nearly 10% stated not professing any religion. As

for the care context, 67.6% lived with the patient, providing care 7 days a week (91.9%), for nearly

12 months (median), with cancer being the most frequent clinical condition (93.7%).

Presence of the diagnosis

From the identication of the diagnosis, established by the presence of the three researched

criteria simultaneously, the population was divided into those who presented the diagnosis and those

who did not.

It was veried that 47 of the 111 caregivers (42.34%) presented the Nursing diagnosis under

study. Caregiver Role Strain was more frequent in older caregivers (mean = 54.5 years old; SD±13.6

versus mean = 48.2 years old; SD±16.2), who were spouses (44.7% versus 21.9%) lived with the

patient (56.6% versus 60.9%), and with the patient being hospitalized at the time of data collection

(57.4% versus 42.6%).

Dening characteristics

Regarding the frequency of the 29 dening characteristics, in Table 1 it can be seen that

“reports diculty watching care receiver go through the illness” and “Apprehension about the future

regarding care receiver´s health” were the most frequent in both groups of caregivers, with and without

the diagnosis. It is also important to note that all the characteristics (except for the “shame of care

recipient”) presented higher frequencies in the group of caregivers with strain, indicating that they

were associated with the diagnosis under study. In 19 characteristics, the dierence between the

groups of caregivers with and without the diagnosis was statistically signicant (with p-values ≤ 0.05).

In the results anchored in Fehring’s model, 6 characteristics were classied as major

(score ≥ 0.8), 14 as secondary, and the remaining 9 were irrelevant. Of the 14 secondary characteristics,

5 present a score of 0.7, namely: “fatigue”, “stress”, “feeling of role captivity”, “alteration in sleep

pattern” and “nancial diculties”. The overall score of the diagnosis was 0.68. We remind that, if the

value is greater than 0.6, the diagnosis is validated for the population under study

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Table 1 – Comparison of the frequency of the dening characteristics in caregivers with and without

Caregiver Role Strain and Fehring’s clinical validation model score. Madeira, Portugal, 2017. (n=111).

Dening characteristic

With diagnosis

(n=47)

Without diagnosis

(n=64)

Fehring’s

Score

n % n %

Lack of time to meet

personal needs

42 89.4 40 62.5 0.001* 0.8

Reports diculty watching care

receiver go through the illness

43 91.5 54 84.4 0.265 0.8

Apprehension about the future

regarding care receiver´s health

43 91.5 53 82.8 0.186 0.8

Preoccupation with care routine 41 87.2 45 70.3 0.035* 0.8

Changes in social life and leisure

activities

40 85.1 39 60.9 0.005* 0.8

Emotional lability 39 83.0 38 59.4 0.008* 0.8

Fatigue 42 89.4 31 48.4 ≤0.001* 0.7

Feeling of role captivity 38 80.9 33 51.6 0.001* 0.7

Stress 37 78.7 37 42.2 ≤0.001* 0.7

Alteration in sleep pattern 37 78.7 38 59.4 0.031* 0.7

Financial diculties 33 70.2 25 39.1 0.002* 0.7

Depressive mood 41 87.2 28 43.8 ≤0.001* 0.6

Ineective coping 33 70.2 14 21.9 ≤0.001* 0.6

Impatience 33 70.2 26 40.6 0.002* 0.6

Diculty performing required tasks 32 68.1 29 45.3 0.017* 0.5

Frustration 31 66.0 19 29.7 ≤0.001* 0.5

Apprehensiveness about future

ability to provide care

30 63.8 33 51.6 0.197 0.5

Somatization 30 63.8 33 51.6 0.197 0.5

Worsening of previous diseases 27 57.4 13 20.3 ≤0.001* 0.5

Anger 23 48.9 29 45.3 0.705 0.5

Changes in work/academic activity 28 59.6 21 32.8 0.005* 0.4

Lack of privacy 22 46.8 12 18.8 0.002* 0.4

Guilt 19 40.4 19 29.7 0.239 0.4

Low self-esteem 17 36.2 10 15.6 0.013* 0.3

Deterioration of family

relationships

17 36.2 18 28.1 0.367 0.3

Perception of change in

quality of care provided

19 40.4 13 20.3 0.021* 0.2

Feelings of manipulation

by care receiver

13 27.7 13 20.3 0.366 0.2

Shame of care receiver 7 14.9 11 17.2 0.746 0.1

Uncertainty and grieving

about changes in relationship

with care receiver

5 10.6 6 9.4 0.826 0.1

*Chi-square test, signicance level ≤ 0.05

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In addition to the previous analysis, the sensitivity (Se), specicity (Sp), predictive values (PV)

and AUC (Area under the ROC Curve) of the dening characteristics of the Caregiver Role Strain

Nursing diagnosis were calculated. According to the data in Table 2, two characteristics were present

in at least 90% of the caregivers who presented the diagnosis under study (Se = 91.5%). On the other

hand, nine were present in less than half of the caregivers with Caregiver Role Strain (Se < 50%).

Regarding specicity, it was veried that 5 characteristics present values above 80%, which

indicates that, when these DCs are absent, the caregivers also do not have the diagnosis under study.

Still focusing on the analysis of Table 2, it is veried that the highest positive predictive values are in

“ineective coping” (70.2%), followed by “worsening of previous diseases” (67.5%), “lack of privacy”

(64.7%) and “low self-esteem” (63.0%). These values indicate the probability of a caregiver with such

characteristics having Caregiver Role Strain. With regard to the negative predictive values, it was found

that the caregivers who did not present “fatigue” (86.8%), “Lack of time to meet personal needs” (82.8%)

and “depressive mood” (85.7%) had a high probability of not suering Caregiver Role Strain either.

It was veried that, of the nine characteristics classied as irrelevant in Fehring’s Model, only

“lack of privacy” obtained p-values ≤ 0.05. For this reason, it is understood that this characteristic has

to be considered as secondary rather than as irrelevant.

Table 2 – Sensitivity, specicity and area under the receiver operation curve of the dening characteristics

of Caregiver Role Strain. Madeira, Portugal, 2017. (n=111).

Fehring Dening characteristic

†

(%)

‡

(%)

PPV

(%)

NPV

(%)

AUC

Major

Reports diculty watching care

receiver go through the illness

91.5 15.6 44.3 71.4 0.5 0.523

Apprehension about the future

regarding care receiver´s health

91.5 17.2 44.8 73.3 0.5 0.436

Lack of time to meet personal needs 89.4 37.5 51.2 82.8 0.6 0.016*

Preoccupation with care routine 87.2 29.7 47.7 76 0.6 0.129

Changes in social life

and leisure activities

85.1 39.1 50.6 78.1 0.6 0.030*

Fatigue 89.4 51.6 57.5 86.8 0.7 ≤0.001*

Emotional lability 83.0 40.6 50.6 76.5 0.6 0.034*

Secondary

Depressive mood 87.2 56.3 59.4 85.7 0.7 ≤0.001*

Feeling of role captivity 80.9 48.4 53.5 77.5 0.7 0.009*

Stress 78.7 57.8 57.8 78.7 0.7 0.001*

Alteration in sleep pattern 78.7 40.6 49.3 72.2 0.6 0.082

Ineective coping 70.2 78.1 70.2 78.1 0.7 ≤0.001*

Impatience 70.2 59.4 55.9 73.1 0.7 0.008*

Financial diculties 70.2 60.9 56.9 73.6 0.7 0.005*

Diculty performing required tasks 68.1 54.7 52.5 70 0.6 0.041*

Frustration 66.0 70.3 62.0 73.8 0.7 0.001*

Apprehensiveness about

future ability to provide care

63.8 48.4 47.6 64.6 0.6 0.271

Somatization 63.8 48.4 47.6 64.6 0.6 0.271

Changes in work/academic activity 59.6 67.2 57.1 69.4 0.6 0.016*

Worsening of previous diseases 57.4 79.7 67.5 71.8 0.7 0.001*

Anger 48.9 54.7 44.2 59.3 0.5 0.745

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Fehring Dening characteristic

†

(%)

‡

(%)

PPV

(%)

NPV

(%)

AUC

Irrelevant

Lack of privacy 46.8 81.3 64.7 67.5 0.6 0.012*

Perception of change in

quality of care provided

40.4 79.7 59.4 64.6 0.6 0.071

Guilt 40.4 70.3 50 61.6 0.6 0.335

Low self-esteem 36.2 84.4 63 64.3 0.6 0.065

Deterioration of family relationships 36.2 71.9 48.6 60.5 0.5 0.470

Feelings of manipulation

by care receiver

27.7 79.7 50.0 60.0 0.5 0.510

Shame of care receiver 14.9 82.8 38.9 57.0 0.5 0.837

Uncertainty and grieving about changes

in relationship with care receiver

10.6 90.6 45.5 58.0 0.5 0.910

*Chi-square test signicance level ≤ 0.05, †Sensitivity, ‡Specicity, §Positive Predictive Value, ||Negative

Predictive Value, ¶Area under the ROC curve

Chart 1 reects the articulation of the methods used to dene the best indicators of the Caregiver

Role Strain Nursing diagnosis in palliative care. It was veried that, of the 29 characteristics tested in

the clinical validation, 9 were classied as major, 13 as secondary and 7 as irrelevant.

Chart 1 – Proposal of the dening characteristics of the Caregiver Role Strain Nursing diagnosis.

Madeira, Portugal, 2017.

Major Secondary Irrelevant

Apprehension about the future

regarding care receiver´s health

Preoccupation with care routine

Lack of time to meet

personal needs

Emotional lability

Depressive mood

Fatigue

Changes in social life

and leisure activities

Reports diculty watching

care receiver go through

the illness

Feeling of role captivity

Apprehensiveness about

future ability to provide care

Diculty performing

required tasks

Stress

Ineective coping

Frustration

Impatience

Alteration in sleep pattern

Anger

Somatization

Worsening of previous diseases

Changes in work/academic activity

Lack of privacy

Financial diculties

Perception of change in

quality of care provided

Guilt

Low self-esteem

Uncertainty and grieving

about changes in relationship

with care receiver

Deterioration of family

relationships

Feelings of manipulation

by care receiver

Shame of care receiver

DISCUSSION

Caregiver Role Strain is a phenomenon present in the context of palliative care;

7,9–10,24

however,

this diagnosis had not yet been validated in this population. Its prevalence has been high among

caregivers of people in dierent situations. A validation study conducted with caregivers of people

after stroke in Brazil revealed a prevalence value of 73.8%

, and another study with caregivers of

Table 2 – Cont.

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dependent people, carried out in the Czech Republic, revealed a prevalence of 82.2%

. Such results

are far above those found in this sample (42.3%), and this fact may be related to several factors.

One of them can be the fact that the criteria for establishing the diagnosis are so dierent in dierent

studies, which could lead to divergent results. On the other hand, the sample of caregivers in this

study was monitored by a team specialized in palliative care, whose intervention is believed to exert

an impact on reducing the strain levels, as support to the family is one of the pillars of palliative care.

The identication of the prole of the caregiver with role strain - spouse, with a mean age of

54.5 years old, who lives with the patient and has the patient hospitalized - will contribute to a more

targeted Nursing intervention and highlights the fact that, even when the patient is hospitalized in a

palliative care service, Caregiver Role Strain remains.

With regard to the dening characteristics, of the 29 tested, seven were considered irrelevant.

Almost all nine DCs classied as major in this study were already included in the NANDA-I classication

(with the exception of the “feeling of role captivity”, which emerged from the integrative literature

review). These characteristics constitute the most frequent set of clinical indicators, they indicate the

presence of the Caregiver Role Strain diagnosis, and have also been found in previous validation

studies of this diagnosis

25–27

It is noteworthy that “apprehension about the future regarding care receiver´s health” and “reports

diculty watching care receiver go through the illness”, classied as major, are very sensitive (91.5%),

although not very specic (17.2%:15.6%), reected in the AUC with values of 0.5, without statistical

signicance. Despite this performance in the diagnostic accuracy measures, these DCs proved to

be crucial for the diagnosis, as they were the ones that appeared more frequently in the caregivers

(91.5%). Making an analogy with the “pain” symptom, this is also a very sensitive symptom in several

diagnoses, although not very specic, needing other attributes for greater diagnostic accuracy.

One of the criticisms to Fehring’s model refers precisely to the results found in the aforementioned

example, in which the score obtained (0.8 in both) is highly inuenced by the prevalence of the DC in

the sample under study, devaluing the relationship between the individuals who have the diagnosis

and those who do not

. The association of other accuracy measures, such as those used in this

study, may help in the decision to maintain or exclude the DC.

The “feeling of role captivity” is a new DC, which emerged in 80.9% of the caregivers with strain

and in 51.6% of those without strain (p = 0.001 and signicant value in the AUC [p = 0.009]). This

feeling of caregiver role captivity, of wanting to ee and distance from everything, constitutes a way

of emotionally dealing with all those experiences that are lived. This sensation of ties, of deprivation

of freedom, does not imply that the caregiver literally wants to abandon the care of their sick family

member. The desire to ee is often associated with feelings of guilt, as these thoughts can become

intrusive and little promoters of the caregiver’s emotional well-being. This clinical indicator has emerged

in studies conducted with caregivers of people with dementia

, and has not been identied in the

context of palliative care, which suggests that the ndings of this research are innovative.

Another DC considered as major was “Fatigue”, present in 89.4% of the caregivers with role

strain, with a statistically very signicant dierence (p<0.001) in relation to the group without the

diagnosis. It also obtained a high NPV (86.8%), implying that a large percentage of caregivers without

“fatigue” also had no strain, which may be considered a good predictor of the diagnosis. A research

study carried out in caregivers of people in palliative care situations in the Netherlands concluded

that high levels of fatigue were related to high strain levels

. In other validation studies, this DC was

classied as secondary

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Of the 13 characteristics classied as secondary in our study, 3 are not included in NANDA-I.

“Worsening of previous diseases” was found in 57.4% of the caregivers with strain, as opposed to

20.3% in caregivers without the diagnosis, this dierence being statistically very signicant (p ≤ 0.001).

The results obtained in the analysis of the accuracy measures conrm that this could be a good

indicator of the presence of the diagnosis.

The physical and emotional eort required to take care of a family member activates

neurochemical, endocrine and metabolic processes, which can lead to organic and emotional

changes that are detrimental to the caregiver’s health

. The association between the worsening of

some physical diseases and Caregiver Role Strain was described in previous research studies

28–29

“Ineective coping” was a DC that was already in the taxonomy, and was maintained after the

review. In this study, it was present in 70.2% of the caregivers with strain, and only in 21.9% of the

caregivers without the diagnosis (p ≤ 0.001), proving to be quite discriminatory of caregiver strain.

Ineective coping strategies was the DC that obtained the best result in the AUC, 0.7 with p-value

≤ 0.001, expressing the best articulation between the sensitivity and specicity values. It was found

among the most specic DCs with 78.1% and also very satisfactory predictive values, in which

70.2% of the caregivers with ineective coping presented strain and 78.1% of the caregivers without

ineective coping did not present the diagnosis. Caring for a family member at the end of life is fraught

with challenges, sometimes aecting the ability to adapt and solve problems. This fact makes the

caregiver feel incapable or powerless to nd adaptive solutions to the most varied challenges that

arise during this process.

Several studies have investigated the coping mechanisms used by caregivers of people in

palliative care situations. A research study conducted in the USA veried that escape-avoidance

was the most frequently used coping mechanism to mediate the relationship between strain and

psychological symptoms of the patients

. In another study, it was found that, when female caregivers

used coping mechanisms focused on emotion, this was associated with greater strain

Seven DCs were excluded, equally excluded in other validation studies; for example, “deterioration

of family relationships”

and “Uncertainty/Grieving about change in relationship with care receiver”

Some characteristics that are not included in NANDA-I, and that emerged from the integrative

review, were classied as irrelevant in the clinical validation in caregivers of people in palliative care

situations. It is then implied that these characteristics may be found in other populations of caregivers

of people with dierent health problems; for example, the “feelings of manipulation” that arise in

caregivers of people with Parkinson’s disease and dementia, or the “shame of the family member”

that occurs in caregivers of people with mental illness

, or in people post-stroke

These results reinforce that the care for a sick or dependent family member varies according

to the caregivers’ characteristics, but also to the clinical context of care, since, in relation to some DCs

associated with Caregiver Role Strain in other populations, no signicant associations were found

in this context of palliative care.

Throughout this study, it was a concern ensuring scientic rigor; however, some limitations may

still persist, deserving due consideration. One of them is related to the type and size of the sample,

which is not randomized, with the possibility that the number of caregivers was higher. In the sense

of improvement, a replica of this study is proposed, with a randomized probabilistic sample and

application in a palliative care unit. The fact that it was always the same researchers who carried out

the entire data collection proved to be a strength of the study, as the criteria to identify who presented,

or did not present, the diagnosis were not inuenced by who the evaluator was, as is the case with

other research studies in which several nurses/researchers do so.

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CONCLUSION

Through this study, it was possible to clinically validate the Caregiver Role Strain Nursing

diagnosis for a population of caregivers of people in palliative care situations. Based on three criteria,

a 42.3% prevalence of the diagnosis was established. The use of several methods in the validation

contributed to greater robustness of the results obtained, which could be replicated in future research

studies and in dierent care contexts. Of the 29 dening characteristics subjected to clinical validation,

22 were considered valid (major or secondary) and seven, irrelevant. Four of the characteristics tested

were not part of NANDA-I. Therefore, it is concluded that the diagnosis needs to be revised in taxonomy.

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NOTES

ORIGIN OF THE ARTICLE

Extracted from the thesis – Clinical Validation of the Caregiver Role Strain Nursing Diagnosis in Family

Caregivers of Patients in Palliative Care, presented to the PhD Program in Nursing of Universidade

Católica Portuguesa, in 2019

CONTRIBUTION OF AUTHORITY

Study design: Lourenço TM, Sá LO.

Data collection: Lourenço TM, Abreu-Figueiredo RM.

Data analysis and interpretation: Lourenço TM, Abreu-Figueiredo RM, Sá LO.

Discussion of the results: Lourenço TM, Abreu-Figueiredo RM.

Writing and/or critical review of the content: Lourenço TM, Abreu-Figueiredo RM, Sá LO.

Review and nal approval of the nal version: Lourenço TM, Sá LO.

ACKNOWLEDGMENT

Funding: The authors thank the Portuguese Foundation for Science and Technology (FCT/MCTES)

for the nancial support of the Center for Interdisciplinary Research in Health (UIDB/04279/2020) of

Universidade Católica Portuguesa.

APPROVAL OF ETHICS COMMITTEE IN RESEARCH

Approved by the Research Ethics Committee of the Regional Health Service of the Autonomous

Region of Madeira, Public Business Entity, opinion No. 44/2014.

CONFLICT OF INTEREST

There is no conict of interest.

EDITORS

Associated Editors: Selma Regina de Andrade, Gisele Cristina Manfrini, Elisiane Lorenzini, Monica

Motta Lino.

Editor-in-chief: Roberta Costa.

HISTORICAL

Received: November 16, 2020.

Approved: June 15, 2021.

CORRESPONDING AUTHOR

Tânia Marlene Gonçalves Lourenço

tmlourenco@esesjcluny.pt