Parents’ satisfaction with care in pediatric intensive care unitsABSTRACT
Objective: To verify the parents’ satisfaction in relation to the care provided to their child admitted to the pediatric intensive care unit and associated clinical factors.
Method: Exploratory, cross-sectional study, with a total of 84 parents, in a private hospital in Sao Paulo, Brazil. Data collection took place from March 2019 to January 2020, in the post-discharge period. Data were analyzed using descriptive statistics and Spearman’s Correlation Coefficient.
Results: Mean satisfaction was high (5.75) (SD=0.35). There was no correlation between parents’ satisfaction and length of hospital stay, severity and illness.
Conclusion: Parents showed high levels of satisfaction with the care received in pediatric intensive care, regardless of disease classification, length of hospital stay or severity. Greater satisfaction was observed in the domains of professional attitude, care and cure, information and parents’ participation.
Keywords: Pediatric Intensive Care Units; Quality of health care; Patient satisfaction; Family nursing
RESUMEN
Objetivo: Verificar la satisfacción de los padres en relación con la atención brindada al niño ingresado en la unidad de cuidados intensivos pediátricos y los factores clínicos asociados. Método: Es una investigación exploratoria y transversal, realizada entre 84 padres en un hospital privado de São Paulo, Brasil. Los datos se recogieron entre marzo de 2019 y enero de 2020, después del alta y se analizaron mediante estadística descriptiva y el Coeficiente de Correlación de Spearman.
Resultados: La media de satisfacción fue alta (5,75) (DP=0,35). No hubo correlación de la satisfacción de los padres con la duración de la estancia, la enfermedad y la gravedad. Conclusión: Los padres mostraron altos niveles de satisfacción con la atención recibida en cuidados intensivos pediátricos, independientemente del período de la hospitalización, de la clasificación de la enfermedad o de la gravedad de la misma. Se observó mayor satisfacción en los dominios de actitud profesional, cuidado y curación, información y participación de los padres.
Palabras clave: Unidades de cuidado intensivo pediátrico; Calidad de la atención de la salud; Satisfacción del paciente; Enfermería de la familia
RESUMO
Objetivo: Verificar a satisfação dos pais em relação ao cuidado prestado ao filho internado na unidade de terapia intensiva pediátrica e fatores clínicos associados.
Método: Pesquisa exploratória, transversal, com 84 pais, em hospital privado de São Paulo, Brasil. A coleta de dados ocorreu de março de 2019 a janeiro de 2020, no pós-alta. Os dados foram analisados por estatística descritiva e Coeficiente de Correlação de Spearman.
Resultados: A média de satisfação foi alta (5,75) (DP=0,35). Não houve correlação da satisfação dos pais com tempo de internação, gravidade e doença.
Conclusão: Os pais apresentaram altos níveis de satisfação com o cuidado recebido na terapia intensiva pediátrica, independentemente da classificação da doença, tempo de internação ou gravidade. Observou-se maior satisfação nos domínios atitude profissional, cuidado e cura, informação e participação dos pais.
Palavras-chave: Unidades de terapia intensiva pediátrica; Qualidade da assistência à saúde; Satisfação do paciente; Enfermagem familiar
INTRODUCTION
The child's hospitalization is recognized as a very stressful experience for parents, due to the lack of knowledge about the procedures performed, the identified diagnoses and the changes in routine and environment1. When hospitalization occurs in intensive care, feelings such as anguish and anxiety are intensified in these parents due to their child's critical health condition1-2.
Institutions that adopt strategies based on child- and family-centered care have better prospects for meeting their needs, making the hospitalization experience less painful, which can, at the same time, generate satisfaction with the care. The Patient and Family-Centered Care Model (PFCC) recognizes the family as a specialist in the care of their children and seeks to establish and maintain a partnership between family, patient and health professionals3.
Still in this perspective, the perception of satisfaction on the part of the family is considered a parameter to assess the quality of care provided and has been the focus of studies in different cultures2,4,5. It should be noted that family satisfaction with care is also associated with the results obtained in relation to the improvement of the child's health status or the reduction of critical symptoms4. Considering this, the question is: what is the degree of satisfaction of families who have a child hospitalized in the Pediatric Intensive Care Unit (PICU)? What clinical factors interfere with the perception of family satisfaction?
Patient and family satisfaction is a concept related to perceived quality of care. In pediatric patient care, it is a complex concept, considering that the family represents the child's opinion, at a time when their emotional condition exerts an important influence on the way care and the environment are perceived6. Thus, it is important to consider which aspects impact the family's emotional condition: disease severity, child's age or length of stay, for example.
To define satisfaction with care, a study7 sought to understand the variables that determine it, including the cognitive and emotional reaction related to the interaction between patients' expectations about ideal nursing care and their perceptions of the real care. Satisfaction represents a combination of expectations, perceptions and experiences that can vary between parents, as it depends on their culture, values and social classes8.
By appropriating concepts about family satisfaction described in the literature, permeated by the cultural characteristics of the environment where the research was conducted, this study considered family satisfaction with care as an attribute that takes into account respect for the needs of parents, the engagement of family in care, the provision of information that assists in decision-making, an organized environment and professional attitudes that promote adequate care from the perspective of families.9
Even more complex than defining satisfaction is finding instruments that can measure it. In Brazil, there is a lack of valid instruments to assess family satisfaction in the Pediatric Intensive Care Unit (PICU), with a consequent limitation of studies investigating the topic2. In the literature, the Empowerment of Parents in the Intensive Care-30 (EMPATHIC-30) questionnaire was identified, designed to assess the experience of parents with children hospitalized in intensive care units9.
Knowing the family's satisfaction with the care received by their children admitted to the PICU can contribute to improving the care processes offered, a better hospitalization experience for the child and family, achieving better results and consequently increasing the quality of care provided9.
This study aims to verify the parents' satisfaction in relation to the care provided to their child admitted to the pediatric intensive care unit and associated clinical factors.
METHOD
This is an exploratory, cross-sectional research, carried out at the PICU, in a private hospital, located in Sao Paulo, SP, Brazil. The Unit is organized into 15 beds, in the modality of single rooms for children and companions. Two adults are allowed to accompany the child within 24 hours, visits being allowed at any time and day of the week. The number of admissions is, on average, 600 per year. The hospitalization age ranges from days of life to 21 years old, with an average hospitalization time of 4 days. Most children come from emergency care units and the operating room. As for the predictive hospital death scores, it is noteworthy that in this unit, the annual average of the Pediatric Logistic Organ Dysfunction (PELOD) is zero, and that of the Pediatric Index of Mortality 2 (PIM2) is 0.8%.
Data were collected from March 2019 to January 2020, before the coronavirus pandemic (SARS-CoV2). The medical team assessed the patients’ discharge conditions in the morning and, as confirmed, the data collection instrument was given to parents who were in the room to be filled out, using an electronic tablet-type device. In cases where the father and mother were present, they were able to choose among themselves who would answer the survey, and this participant received information about completing the questionnaire, as well as about the Informed Consent Form (ICF), the researcher, then, left the questionnaire with the participant, without the stipulated time for filling it out.
The study included parents of children who were hospitalized at the PICU for more than 48 hours, of legal age, regardless of the patient's diagnosis, and who were present at the time of discharge. As exclusion criteria, we defined parents of children who did not speak Portuguese, those whose child died or readmitted during the period of data collection.
The sample size calculation was obtained using the results observed by the author of the EMPATHIC-30 questionnaire to estimate the variability of the total score. According to Latour10, 2858 parents of children admitted to the PICU answered all items of the EMPATHIC-30 questionnaire, with a mean of 5.28, with a standard deviation of 0.61 (95% CI: 5.26; 5.30) for the total score. Thus, a sample of 70 parents (one per hospitalized child) would be enough to build a confidence interval of 95%, with an amplitude of 0.28 for a standard deviation of 0.61(10). Sample size estimation calculations were performed using the PASS program [2], with a two-tailed significance level of 5%, using a confidence interval for a mean.
The data collection instrument contained the sociodemographic information of the parents, the EMPATHIC-30 questionnaire, in addition to data and information on the child, such as age, length of stay, diagnosis, PIM2 and PELOD, use of mechanical ventilation and presence of medical devices.
The EMPATHIC-30 questionnaire was constructed and rigorously validated in eight university hospitals, in pediatric and neonatal intensive care units, in 2009, in the Netherlands10. It is a self-administered instrument consisting of 30 statements designed to assess satisfaction with the care provided by nurses, physicians and the structure of the hospital environment, as well as evaluating the experience of parents in intensive care through a questionnaire for quantitative analysis of satisfaction recently validated for the Brazilian context10, in addition to versions in several other countries, such as Australia11, Turkey12 and Spain13.
Satisfaction, a dependent variable, was assessed by applying the EMPATHIC-30, an instrument divided into five domains: information (five items); care and cure (eight items); organization (five items); parental participation (six items); and professional attitude (six items). Answers are provided on a six-point scale, ranging from 1 ("certainly no") to 6 ("certainly yes").
The study’s independent variables were as follows: Length of hospital stay (considered day 1 as the date of admission, regardless of the time of admission); Diagnosis; Type of disease: acute or chronic; PIM2 (score calculated from information collected at the time the child is admitted to the PICU, quantifying how sick the child was at the time the child started intensive care); PELOD: the score has a minimum amplitude of zero and a maximum of 71 points, evaluating organ dysfunction at the time of admission.
PIM2 and PELOD are scores that quantify patient severity and predict death. It is important to measure them, as they are used to assess outcomes in the PICU and, consequently, the quality of care provided15.
The data underwent a normality test and it was found that they were asymmetric. To assess the relationship between the length of stay in the PICU and the children's disease severity scores with the satisfaction of the parents, Spearman's correlation coefficients were used. Parents of patients with chronic and acute illness were compared in terms of satisfaction scores using non-parametric Mann-Whitney tests. The analyzes were carried out with the aid of the SPSS statistical package, with the level of significance set at 5%.
Data collection was performed after approval by the Research Ethics Committee (REC) in 2019, under opinion number 3 183 072. In compliance with Resolution No. 466/2012, all participants consented to participate in the research after being informed about the study objectives, the form of participation, the risks and benefits, as well as the guarantee of anonymity and confidentiality, signing the ICF.
RESULTS
The sample consisted of a total of 84 parents of children admitted to the PICU, mostly mothers (71; 84.5%), aged between 33 and 42 years old (56; 66.7%) and married or in a stable relationship, as shown in Table 1. During the period the children stayed at the PICU, most parents (70; 83.3%) remained full-time. All parents approached, eligible for the study, were included in the sample.
The median age, in months, of the patients was 53.9 (10; 97.5), most of them being girls (52.4%), with an average length of hospital stay of 6.2 (4.1) days, by acute disease (65.5%) and clinical treatment (77.4%), as shown in Table 2.
Considering the severity assessment on admission to the PICU, the PIM 2 index ranged between zero and 84%, with a median of 0.8% (IIQ [0.3% -1.0%]), while the PELOD index ranged from zero and 31 points on admission to the PICU. We observed that 74 (88.1%) patients did not need mechanical ventilation and 10 (11.9%) used it for periods between three and 495 hours, with a median of 60 hours (IIQ [14-168 hours]). After discharge from the PICU, 64 (76.2%) patients were transferred to the pediatric ward.
A total of 132 devices used in these children were identified, among which the peripheral venous catheters (54; 76%), the peripherally inserted central venous catheter (PICC) (20; 28.2%) and the nasogastric tube (13; 18.3%) stand out. It was observed that 57 (68%) patients used up to two concomitant devices during their stay in the PICU.
The assessment of parents’ satisfaction through the use of the EMPATHIC-30 questionnaire was extremely positive, revealing an overall mean of 5.75 (SD=0.35). After calculating the scores for the domains of the scale, we observed greater satisfaction in the domains professional attitude, with an average of 5.85 (SD=0.35), care and cure, with an average of 5.71 (SD=0.48), information and parents’ participation, both with an average of 5.65 (SD=0.54 for information and 0.56 for parents' participation), and, finally, organization, with an average of 5.54 (SD=0.56), as shown in Table 3.
In the assessment of parents in relation to the care received at the PICU, Table 4 shows that the components with the highest proportions of responses that showed high satisfaction, according to the respective domain, were as follows: Information, with regard to positive perception, for being able to talk every day with the medical team about the child's care and treatment (5.90; SD=0.37); Parental participation, when expressing confidence in the medical team (5.92; SD=0.32); another positive aspect listed was in relation to the feeling of respect for the child and for themselves (5.90; SD=0.40); and, finally, by the possibility of staying with the child during the procedures (5.90; SD=0.37).
In the Professional Attitude domain, the high degree of satisfaction refers to the feeling of being welcomed when the child is admitted to the PICU. On the other hand, an item related to the Organization domain related to noise in the unit had the worst score, with only 51 families indicating “certainly yes”. Regarding the item in the Parent participation domain, which deals with the team's frequent concern about how the parents were feeling, only 50 parents had the perception that this occurred during the child's hospitalization period.
Parents who answered “not applicable” or left the answer blank for one or more items in a certain domain, leaving no satisfaction score in that domain. Likewise, the total satisfaction items score was calculated only for parents with answers present and other than “not applicable” for all items (valid answers).
Parents’ satisfaction scores were compared with regard to the care provided related to acute and chronic illnesses (Figure 1). There is no evidence of significant differences in the domains, as evidenced by information (p=0.800), care and cure (p=0.563), organization (p=0.479), parents’ participation (p=0.563), professional attitude (p =0.828) and total (p=0.572) of the EMPATHIC-30 scale.
Relation between the patients' type of disease and the scores of the domains of the EMPATHIC-30 questionnaire to assess parents' satisfaction with regard to the care provided.
The coefficients obtained indicate a lack of correlation between length of stay, PIM 2 and PELOD and scores of the domains of the EMPATHIC-30 questionnaire, with all values showing no evidence of differences when compared to zero. Namely, for each domain of the questionnaire and the correlation with the length of stay, PIM2 and PELOD at admission, respectively, the following values were obtained, as shown in Table 5.
Finally, in the total of satisfaction items, the values (n=49) of -0.034 (p=0.818), -0.019 (p=0.898) and -0.070 (p=0.633) were obtained, respectively.
DISCUSSION
The study showed that the families of children admitted to the PICU revealed high levels of satisfaction with the care provided by the multidisciplinary and support teams (mean of 5.75), especially with regard to the domains "professional attitude" (5.85), “care and cure” (5.71) and “information” and “parents’ participation” (5.65). Similar results were identified in other studies in which the questionnaire was applied10,11,13.
In this population, the level of general satisfaction with the service was high in all domains of the questionnaire, with no significance regardless of the classification or severity of the disease (p=0.572) and length of stay (p=0.818). The literature emphasizes that the child's hospitalization in the ICU is always a critical and stressful moment for the family16,17, which could negatively influence their perception of the environment and care, actions and specific attitudes of the multidisciplinary team. However, the data found in this study contradicted what the literature claims3, even considering clinical conditions of low complexity and short hospital stay.
Intensive care patients and especially critically ill children have limited reserve to tolerate failures in care or treatment. On the other hand, this type of patient can benefit extraordinarily when the quality of care provided is increased (18). Thus, this research made progress in evaluating the family's satisfaction with the care received, understanding the importance of this indicator for the quality provided in a PICU and for the empowerment of the family when its perception is considered. Such data corroborate another Brazilian study on the subject (10), as considering the family perspective and placing it as a fundamental element in the hospitalization of critically ill children fosters the practice of care centered on the child and family.
Families indicated that talking every day with the medical team about the care and treatment of the child is an action they value (score of 5.98), which reveal good care by the institution's team, generating a feeling of trust in physicians (5.92) and nurses (5.67). Thus, the literature highlights some actions that favor family satisfaction related to parents’ communication and participation, such as committing and being willing to listen to parents, providing sufficient and adequate information so that the family can make the best decision, in addition to develop autonomy in relation to the treatment of their own child, this is in line with one of the components mentioned in the Model (PFCC), which is the sharing of information.(4,19,20).
The “parents’ participation” domain corroborated the high level of satisfaction, as the family excels in having participated or being present during all the procedures the child was submitted. Similarly, these findings were identified in other investigations(10,11,13). Previous studies emphasize the importance of parents' participation in child care as an attitude that increases their satisfaction with the service, including allowing them to learn more about the disease, treatment and prognosis of their children, adding value to the safety attribute(5,18,20).
In the “professional attitude” domain, the best rated sub-items were “The team showed respect for our son and for us” and “We were welcomed on arrival at the ICU”, both with an average of 5.9. The concept of respect can be understood as something subjective, that is, the result of the encounter of subjectivities between the family and the professional, with a view to reducing the technicality of care and making this encounter more meaningful and human. Attentive posture, trust and empathy are attitudes valued by the patient and family(18), which can indicate respect.
Showing interest in the parents' feelings and the child's well-being establishes a bond between the team and the family. Parental knowledge can contribute important information and favor early intervention with a better health outcome in order to value health in its multidisciplinary approach(16). However, when compared to other aspects assessed, the item that addressed regular concern about how the family was feeling had a lower score than the other items assessed.
The general satisfaction of parents in the "care and cure" domain is also considered good. However, preparation for discharge had a poor or low score when compared to other standards, despite the hospital's philosophy of starting preparation for discharge from the moment of admission. This result is similar to the findings of a study in Australia11, which also did not meet the family's expectations regarding preparation for discharge. Admission to an intensive care setting, such as PICU, has a greater emotional impact on children and their parents compared to a general pediatric inpatient setting, which can make the guidance/education process for discharge or transfer difficult20. This study pointed to flaws in this process, requiring revision or readjustment so that families can feel confident and secure in the transition to other units or to their house.
The “organization” domain questionnaire had the lowest degree of satisfaction, an assessment that was largely due to the fact that there was dissatisfaction with the noise in the PICU, and a similar result was found in the study in Spain13. Although persistent noise disturbs the healing environment, there are many activities that generate noise, in addition to persistent sounds from monitor alarms, mechanical ventilators, and infusion pumps. At the time of the research, there was a structural work on the entire front of the hospital. In this scenario, the noise of machines and employees fitting construction materials was constant and there were complaints from parents every day, which intensified the noise in an environment that is already considered complex in relation to this factor. Another research that evaluated the attributes of satisfaction and quality in the perception of the patient and the family listed that a context of care can be considered therapeutic when effectively managing the control of people's circulation, noise and the viability of a welcoming environment and comfort19.
CONCLUSION
It was concluded that parents showed high levels of satisfaction with the care received at the PICU. There was no correlation between parents’ satisfaction and length of stay, type of disease, PIM 2 severity indices and PELOD.
Greater satisfaction was observed in the domains of professional attitude, care and cure, information and parents’ participation. Communication between the family and the multidisciplinary team, as well as the possibility for the family to be present full time or participate in the care provided to their child, permeates the care initiatives and leads to higher levels of family satisfaction, in addition to reinforcing the precepts of the Patient and Family Care Centered model.
It is noteworthy that the studied population represents a very specific cultural and socioeconomic stratum, when compared to other care institutions, as well as the place where the study was developed, which can be highlighted as a limitation of this research.
The commitment to family satisfaction does not end in this research. Another study has been carried out in partnership with a public institution, whose aim is to increase knowledge on the subject, associating the use of EMPATHIC-30 with another user satisfaction assessment tool. Other studies can be carried out to assess family satisfaction in more complex contexts, such as the case in which the child died, or to analyze the perception of the family in situations of frequent readmissions.
Acknowledgment:
To the Programa de Mestrado Profissional em Enfermagem at the Faculdade Israelita de Ciências da Saúde Albert Einstein for their support for this research and for the publication of this article.
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Publication Dates
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Publication in this collection
23 May 2022 -
Date of issue
2022
History
-
Received
15 Feb 2021 -
Accepted
25 Aug 2021
Source: Research data, 2019-2020.