What are some environmental stressors for the child and family in the pediatric intensive care unit?

Abstract

Objective

To determine the sociodemographic and clinical factors leading to stress among parents whose children are admitted in pediatric intensive care unit (PICU).

Methods

A prospective observational study was conducted in PICU of a tertiary care hospital of north India. Parents of children admitted to PICU for at least 48 h duration were eligible for participation. At the end of 48 h, parental stress was assessed using parental stress scale (PSS:PICU) questionnaire which was administered to the parents. Baseline demographic and clinical parameters of children admitted to PICU were recorded. The parental stress was compared with demographic and clinical characteristics of children using appropriate statistical methods.

Results

A total of 49 parents were finally eligible for participation. Mean (SD) parental stress scores was highest in domains of procedures [1.52 (0.66)] and behavior and emotional [1.32 (0.42)] subscales. Mean (SD) total parental stress score among intubated children [1.31 (0.25)] was significantly more than among non intubated children [0.97 (0.26)] (p < 0.001). However, parental stress score were comparable in terms of gender (p = 0.15) and socioeconomic status (p = 0.32). On subscale analysis, it was found that professional communication is a significant stressor in age groups 0–12 mo [0.61(0.41)] (p = 0.02). It was observed that parents of intubated children were significantly stressed by the physical appearance of their children (p < 0.001), procedures performed on them (p = 0.008) and impairment in parental role (p = 0.002). Total parental stress score had a positive correlation with PRISM score (r = 0.308).

Conclusions

Indian parents are stressed maximally with environment of PICU. Factor leading to parental stress was intubation status of the child and was not affected by gender or socio demographic profile of the parents.

Introduction

Pediatric intensive care unit (PICU) is considered stressful environment and emotionally challenging for parents and caregivers. Technological gadgetries, unfamiliar circumstances, fear of adverse outcomes and financial issues probably lead to their stress. There is a growing concern to address this parental stress in developed countries. Studies have demonstrated immediate as well as post traumatic stress disorders among parents whose children are admitted in PICU [1]. There are only limited tools or validated instruments to quantify the parental stress in PICU: parental stress scale: PICU (PSS:PICU) and critical care family needs inventory (CCFNI) [2, 3].

The authors believe, PICU set up in India is different from those of developed nations. This could be attributed to differences in infrastructure, financial constraints of parents, lack of state sponsored schemes for health insurance, poor doctor/nurse and patient ratio and lack of professional counselors. Hence this study was designed with an aim to determine the sociodemographic and clinical factors leading to stress among parents whose children are admitted in PICU.

Material and Methods

This prospective observational study was conducted in PICU of Pt. B.D. Sharma PGIMS Rohtak, Haryana. It is a government funded tertiary care centre for critically ill children and receives on an average, 400 patients per year. It caters to heterogeneous population from urban areas of Rohtak and surrounding rural districts of Haryana. The 8 bedded PICU is staffed with 2 consultants, 3 resident doctors and 10 nursing staff on 12 h rotation duty. The study was conducted from January 2013 through June 2013.

Parents (either mother or father of more than 18 y of age) of children admitted to PICU for at least 48 h duration were invited to participate in the study. Parents whose primary spoken language was Hindi and were able to read and/or interpret Hindi were enroled in the study. Parents with pre-existing psychiatric illness (as per history) or children whose parents stay away from them and were under the care of a guardian were excluded from the study. Parents with suspected pre-existing psychiatric illness were screened by a psychiatrist.

The following information pertaining to the child was collected from the parents: age, gender, residential address, socioeconomic status (SES) (revised Kuppuswamy scale) and history of any medical surgical or psychiatric illness in parents [4]. Nature of admission, prior ward or PICU admission and need of mechanical ventilation or inotropic support prior to admission to PICU was recorded. On admission to PICU, PRISM (pediatric risk of mortality) [5] was done for all patients. In addition, need of inotropic or ventilatory support, nasogastric tube insertion, central venous or urinary catheterization and need of any other invasive procedure was recorded.

At the end of 48 h, parents were invited to participate in the study. They were assured of confidential nature of the data and should they choose not to participate in the study, treatment of their child will not be affected. The instrument was translated by a professional translator in Hindi and back translated to English to check for any discrepancies. This translated PSS:PICU questionnaire was given to the participants and collected after completion. An interpreter (Staff nurse not involved in PICU care) was involved to clarify the study instrument to the participants. The completed questionnaires were sealed by the interpreter which were opened only after the completion of study enrolment.

Parental stress scale: PICU (PSS: PICU) is a 37 item instrument originally developed by Carter is used to assess the stressors of PICU [3]. It has 3 broad areas - personal family, situational and environmental stressors. It is further classified into 7 subscales with each subscale having multiple items. Each item is assessed on a 5 point Likert scale with 0 - not experienced, 1 - not stressful to 5 - extremely stressful.

Each subscale score is mean of item scores and final total score is mean of seven subscale scores. The instrument was piloted on 10 patients prior to initiation of the study. All precautions were exercised to retain the meaning, grammar and simplicity of original version of PSS: PICU [3].

Approval was obtained from institutional ethical committee prior to initiation of study. An informed consent was obtained from the parents. They were also provided with parent information sheet about the study methodology, which they retained with themselves.

Data were entered by 2 investigators (MA and JSK) into separate Microsoft excel sheets which were compared and any discrepancies were cross checked with original data. Categorical variables were presented as numbers and proportions while continuous variables as mean and standard deviation. Data was screened for missing values outliers and distributional characteristics. Data was analysed by SPSS 16.0 (statistical package for the social sciences) version for descriptive statistics. Univariate followed by multivariate logistic analysis was used to correlate demographic and clinical factors associated with stress levels. Factors including age, gender, parental socioeconomic status, PRISM score and ventilation status of children were compared with parental stress scores using student T test and ANOVA. P value of <0.05 was considered significant.

Results

A total of 49 parents [12 (24.4 %) mothers and 37 (75.5 %) fathers] were enroled in the study. Among the children of 49 parents, 24 (49 %) boys and 25 (51 %) girls. The median (IQR) age of children was 36 (6.5, 84) mo [age < 12 mo: 19 (38.8 %); age 12– 60 mo: 14 (28.57 %); age > 60 mo: 16(32.65 %)]. Socioeconomic status was low [30 (61.2 %)] in majority of enroled study subjects. Among the children of 49 parents, 16 (32.7 %) required intubation and mechanical ventilation during PICU stay. Mean (SD) PRISM score at admission was 13.57 (6.78).

Mean (SD) parental stress scores on individual subscales as assessed by PSS:PICU were: appearance [0.94 (0.83)], sight and sound [2.06 (0.93)], procedure [1.52 (0.66)], behavior staff [0.28 (0.39)], parental role [1.04 (0.45)], professional communication [0.41 (0.45)], and behavior emotion [1.32 (0.42)]. Most stressful scoring was done by the parents on questions pertaining to “not able to hold the child” and “using words difficult to understand”. Mean (SD) total parental stress score among intubated children [1.31 (0.25)] was significantly more than among non intubated children [0.97 (0.26)] (p < 0.001). However, Mean (SD) parental stress score were comparable among male [1.15 (0.29)] and female children [1.02 (0.29)] (p = 0.15). Similarly, parental stress scores were found comparable among children from upper SES [1.12 (0.28)] and lower SES [1.03 (0.32)] (p = 0.32).

On comparison of subscale of parental stress with demographic characteristics, it was observed that stress scores are not affected by gender of their children (Table 1). It was found that parents of upper socioeconomic status were affected significantly by procedures on their children (p = 0.048) (Table 1). In addition, on comparison with age categories it was found that professional communication was a significant stressor in age groups 0–12 mo [0.61 (0.41)] as compared to 12–60 mo [0.35 (0.53)] and > 60 mo [0.21 (0.34)] (p = 0.02). It was observed that parents of intubated children are significantly stressed by the physical appearance of their children (p < 0.001), procedures performed on them (p = 0.008) and impairment in parental role (p = 0.002) (Table 1). On correlation analysis, it was found that total parental stress score had a positive linear correlation with PRISM score (r = 0.308). Total parental stress scores were significantly affected if the child was already on ventilator support (p = 0.04) or inotropic support (p = 0.004) prior to PICU admission. However, the stress scores were not affected if the child had previous PICU stay (p = 0.69) or ward admission (p = 0.45).

Table 1 Parental stress scores with respect to demographic (gender and socioeconomic status) and clinical factors (intubation status) among children admitted in PICU

Full size table

Discussion

The present study found that sight and sound of equipments in PICU contributed maximum to parental stress and overall parental stress score was dependent on intubation status of the child. Numerous researches from developed countries have emphasized the role of addressing parental concerns in PICU in addition to routine care of patients [6–9]. However, information on factors leading to stress among Indian parents whose children are critically ill is limited. The strength of the present study is that it provides an insight into aspects of parental stress and its associated factors in the perspective of a developing country.

Parents often perceive the need of accurate and truthful information about the health status of their child [6]. The authors believe, they are stressed with lack of constant proximity to their child, feeling of helplessness in care of their child and lack of clear information from attending intensivist. It was also found that mothers of PICU children experienced significantly more anxiety, anger, depression, and confusion as compared to those whose children were admitted in general care unit [6]. In a study on 272 parents, it was found that 87 (32 %) of mothers had acute stress disorder during PICU stay of their children [7]. The main concerns of mother found in this study were unexpected PICU admission, fear of death which probably lead to acute stress disorder [7]. Studies have also reported occurrence of post traumatic stress disorder (PTSD) among parents of PICU children [1, 8, 9]. It is perceived that extent of immediate psychological impact would determine the degree of PTSD among them [10]. However, the present study lacked an appropriate follow up to assess the long term psychological impact of PICU stay.

The authors found that sight and sound of PICU equipment and monitor contributed maximum to parental stress. Similar observations were found among a study on Hispanic parents where sight, sound and procedure were found to be most stressful in PICU environment [11]. The environment of PICU is dominated by constant buzzing noise of monitors and ventilators. In their study they found that parental education was significantly correlated with total stress score [11]. Authors from developed countries have ascribed parental role as a greatest stressor among parents of children requiring PICU admission. Few other authors have reported behavior and emotions as the most important contributor to parental stress [12–14].

In the present study, the authors observed that parental stress in PICU is affected by intubation status of the child. It was observed that parental role in care of their child was significantly impaired among the intubated children when compared to those who were not intubated. This finding is consistent with previous study where main factor for parental (father) stress was intubation [14]. Painful procedures were a source of greater stress to parents of intubated children when compared to non intubated children. Among the non intubated children the authors found that behavior of staff and the children’s reactions to the intensive care experience caused greater stress to the parents [15].

Previous literatures have described that parental stress score is not affected by severity of illness. In the present study the authors observed that total parental stress score positively correlated with PRISM scoring. In addition, they saw that total scores were higher among those who were on prior inotropic or ventilatory support. This could mean that those who were sick at admission (higher PRISM score) were probably sick and were being treated at some other healthcare facility before they came to authors. Hence, the parents of children who got admitted with higher PRISM scores at authors’ PICU were transporting an already sick child. This could probably explain the higher stress scores associated with increasing severity of child’s illness in present study population.

Professional staff communication has shown to impact the parental stress levels. Poor staff communication might raise the acute level of stress among parents. The authors believe, staff communication might significantly be affected by presence of professional counselors. Public sector hospitals of India are crippled with shortage of nursing staff, doctors, and funds. Procurement of professional counselors in tertiary care hospitals could probably address these concerns.

It was observed that contribution of professional communication in parental stress was not affected by gender and socio economic status. Socioeconomic status (SES) did not contribute to overall parental stress although procedure created more stress among those with higher SES. This is obvious from the fact that concern of parents to children is unlikely to be dependent on the socioeconomic status. However, it was observed that parents of higher SES had higher stress score among those related to procedures. This procedure related stress findings could probably be influenced by ability of parents of higher SES to access information related to the procedure from various resources. Moreover, these results have to be interpreted in the light of the fact that majority of index parents belonged to lower SES. The authors did not find any significance of gender on parental stress. This is contrast to existence of male gender-biased referral and treatment-seeking behavior of parents in index study population. This gender bias is well rooted in the traditional culture of the Indian society where male children are brought to medical attention more frequently and females are neglected. Literature has shown that mothers are stressed more than fathers especially among parents with Down syndrome [16].

There are few limitations of this study which includes lack of follow up, exclusion of those who were non Hindi speaking population; in addition the authors did not analyze those who expired within 48 h of PICU admission. Moreover, pre-existing medical or psychosocial illness of parents could confound acute stress level with PICU admission. Most of western PICU are staffed with counselors and time is devoted for parental counseling. However, such an atmosphere is not anticipated in public sectors like the present one, where there are limitations of staff nurse, doctors and lack of appropriate social worker. There is rapid turnover of patients and these psychological aspects are often neglected in patient care in resource limited settings.

Hence, it is concluded that Indian parents are stressed maximally with environment of PICU and the most significant factor leading to parental stress is intubation status of the child rather than socio demographic profile of the parents. However, further longitudinal studies on the psychological aspects of parents whose children are admitted in PICU are required from Indian subcontinent.

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Acknowledgments

The authors would like to thank Senior Professor Dr. Sujata Sethi, Department of Psychiatry for her critical inputs in study design and methodology.

Contributions

The study was conceived by JSK and KM. Data were collected by MA, HK and GK under the supervision of JSK and KM; and analyzed and interpreted by JSK. The article was drafted by MA and JSK. The final version was approved by all authors. KM will act as guarantor for this paper.

Conflict of Interest

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Authors and Affiliations

1. Department of Pediatrics, Pt B D Sharma PGIMS, Rohtak, Haryana, 124001, India

   Mohd. Aamir, Kundan Mittal, Jaya Shankar Kaushik, Haripal Kashyap & Gurpreet Kaur

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1. Mohd. Aamir

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2. Kundan Mittal

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3. Jaya Shankar Kaushik

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4. Haripal Kashyap

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5. Gurpreet Kaur

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Correspondence to Jaya Shankar Kaushik.

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Aamir, M., Mittal, K., Kaushik, J.S. et al. Predictors of Stress Among Parents in Pediatric Intensive Care Unit: A Prospective Observational Study. Indian J Pediatr 81, 1167–1170 (2014). https://doi.org/10.1007/s12098-014-1415-6

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• Received: 19 August 2013

• Accepted: 12 March 2014

• Published: 15 April 2014

• Issue Date: November 2014

• DOI: https://doi.org/10.1007/s12098-014-1415-6

Keywords

• Parental stress
• PICU
• PSS:PICU score
• Socio economic status
• Gender