Indian J Pediatr (November 2014) 81(11):1141–1142 DOI 10.1007/s12098-014-1599-9
EDITORIAL COMMENTARY
Parental Stress in Pediatric Intensive Care Unit: How Do We Cope With It? Jhuma Sankar & Rakesh Lodha & S. K. Kabra
Received: 29 September 2014 / Accepted: 29 September 2014 / Published online: 15 October 2014 # Dr. K C Chaudhuri Foundation 2014
Admission to an Intensive care unit (ICU) is considered to be a highly stressful event for both patients and caregivers. Similar to ICUs catering to adult populations, pediatric intensive care units have been well recognized as stressful places for parents/ caregivers. The fear of losing a loved one is the underlying cause of stress in all those affected. In addition, separation from their loved one, inability to participate in their care and failure of the health care team to provide honest information, hope and empathy adds to this fear resulting in acute stress in these individuals [1–3]. In the adult population, the prevalence of depressive symptoms in family members of patients has been reported to be 18–50 % while that of post traumatic stress disorder (PTSD) is reported to be 2–3 times higher than the general population. The risk of these symptoms is higher in older people, women, those with lower education level, previous history of psychiatric symptoms, when there is inconsistency between caregivers preference and what is actually required of them, and discordance between preferred and perceived decision making, to name a few [4]. In reporting factors associated with increased stress in parents/ caregivers, most authors have used both qualitative methods and quantitative tools such as Parental Stress Score in PICU (PSS: PICU) [5]. The PSS: PICU developed by Carter and Miles is a validated instrument comprising of 37 items designed to measure the overall stress response of parents to potential sources of stress when their child is hospitalized in the ICU. Each item is scored 1 (not stressful) to 5 (extremely stressful) or as 0 (not experienced). The possible range of scores is from 0 to 185. The stressors are grouped under seven dimensions and include child’s behavior and emotions, J. Sankar (*) : R. Lodha : S. K. Kabra Department of Pediatrics, All India Institute of Medical Sciences, New Delhi 110029, India e-mail: [email protected]
parental role alteration, procedures, sights and sounds, staff communication, staff/resident behaviors and child’s appearance. Apart from the above stressors, scores are also taken in three categories related to experiences in PICU, child behavior, and things they see or hear [5]. Most of the data described above using qualitative or quantitative methods on parental stressor in PICU, is from resource replete countries [1–3]. As family preferences and clinicians’ delivery of care are affected by regional, religious and cultural influences, the experience from resource-limited countries such as India may be different. Unfortunately, the information from these settings is limited [6, 7]. A study on 112 parents in Malaysia revealed that alteration in parental role was the most stressful factor for parents [6]. Parents’ gender, previous experience and severity of illness possibly influenced the stress response. In a study on parental stressors from Ludhiana, India, the authors observed that there is significant stress among parents of children admitted to PICU and stress factors are different from those reported from developed countries [7]. Mothers of children admitted were more stressed than the fathers’ and the child’s response to pain was also a very stressful experience for the family members. Thus, given the paucity of data from developing countries, there is a need to generate more information on this important topic so as to plan interventions and bundles to cope with them. In this issue of the Journal, Aamir et al. [8] report their experience of assessment of parental stress using PSS: PICU. This study is important as it provides important information regarding stressors in a government set up with limited resources. In this prospective observational study, 49 parents were included and the PSS: PICU was calculated using a translated version of the English one. Although the numbers were small, the authors noted the PICU environment and status of intubation to be most stressful to the parents. The findings, therefore, are similar to what have been reported
1142
from developed countries and it appears that, irrespective of the set up, procedures performed on children and the sights and sounds of the PICU environment are major stressors for parents. However, the results of this study may be affected by factors such as prior mental health of the parents that was not assessed using recommended methods and also by using the Hindi version of the questionnaire without assessing its reliability using appropriate statistical methods. This is important as prior poor mental health of parents predisposes them to developing depressive symptoms and PTSD much more commonly than those without such predisposition [4]. It is equally important to test the reliability of any questionnaire or instrument developed in a different set up before using it in that set up as while translating the questionnaire the meanings may change and this would affect the external validity and limit generalizability of the results [6]. Nevertheless, this study gives an insight into the factors causing parental stress in government organizations with limitation of staff and resources and may be applicable to most units with similar backgrounds. It also adds to information on parental stress factors in our country so that optimal interventions or bundles could be developed to cope with such stress. Interventional studies to reduce the burden of psychological symptoms in family members have shown that providing standardized end-of-life family conferences to encourage family participation and a bereavement packet significantly decreased symptoms. Offering spiritual support during ICU stay, access to a counselor, providing a place to be alone, help with financial problems, support group, unrestricted access to patient are few other interventions that have shown to be helpful in coping with stress and reducing psychological symptoms [4]. Although there are no randomized controlled trials in pediatrics on the effect of these interventions, in a systematic review on impact of critical illness on families, the authors concluded that families of ill and injured children would benefit from physicians catering to sick children acquiring enhanced knowledge and sensitivity about family communication and dynamics [3]. Thus, future research should be aimed at evaluating these and other interventions that help reduce the burden of psychological symptoms in parents of critically ill or injured children. And for this purpose, more methodically rigorous studies (using validated questionnaire)
Indian J Pediatr (November 2014) 81(11):1141–1142
from different regions of the country are needed to identify factors common to our subcontinent. Other areas of research in this topic should include follow-up studies to estimate the burden of psychiatric illnesses such as PTSD and depression in parents after discharge/death form the ICU. There is no information available on the short term and long-term effects of PICU admission on parents’ mental health and the burden of psychological symptoms due to such admission. The authors would like to conclude by emphasizing that parental stress is common in PICUs, irrespective of the setting. The environment, painful procedures, prior mental health and demographic characteristics of the population are likely to affect the level of stress in the parents of critically ill or injured child. Interventions to cope with the stress should be incorporated and implemented right from the time of admission to help parents cope with the acute stress. Conflict of Interest None. Source of Funding None.
References 1. Miles MS, Carter MC. Coping strategies used by parents during their child’shospitalization in an intensive care unit. Child Health Care. 1985;14:14–21. 2. LaMontagne LL, Pawlak R. Stress and coping of parents of children in a pediatric intensive care unit. Heart Lung. 1990;19:416–21. 3. Shudy M, de Almeida ML, Ly S, Landon C, Groft S, Jenkins TL, et al. Impact of pediatric critical illness and injury on families: a systematic literature review. Pediatrics. 2006;118:S203–18. 4. Gries CJ, Engelberg RA, Kross EK, Zatzick D, Nielsen EL, Downey L, et al. Predictors of symptoms of post traumatic stress and depression in family membersafter patient death in the ICU. Chest. 2010;137:280–7. 5. Carter MC, Miles MS. The parental stressor scale: pediatric intensive care unit. Matern Child Nurs J. 1989;18:187–98. 6. Nizam M, Norzila MZ. Stress among parents with acutely ill children. Med J Malaysia. 2001;56:428–34. 7. Pooni PA, Singh D, Bains HS, Misra BP, Soni RK. Parental stress in apaediatric intensive care unit in Punjab. India J Paediatr Child Health. 2013;49:204–9. 8. Aamir M, Mittal K, Kaushik JS, Kashyap H, Kaur G. Predictors of stress among parents in pediatric intensive care unit: a prospective observational study. Indian J Pediatr. 2014. Doi: 10.1007/s12098-0141415-6.
EDITORIAL COMMENTARY
Parental Stress in Pediatric Intensive Care Unit: How Do We Cope With It? Jhuma Sankar & Rakesh Lodha & S. K. Kabra
Received: 29 September 2014 / Accepted: 29 September 2014 / Published online: 15 October 2014 # Dr. K C Chaudhuri Foundation 2014
Admission to an Intensive care unit (ICU) is considered to be a highly stressful event for both patients and caregivers. Similar to ICUs catering to adult populations, pediatric intensive care units have been well recognized as stressful places for parents/ caregivers. The fear of losing a loved one is the underlying cause of stress in all those affected. In addition, separation from their loved one, inability to participate in their care and failure of the health care team to provide honest information, hope and empathy adds to this fear resulting in acute stress in these individuals [1–3]. In the adult population, the prevalence of depressive symptoms in family members of patients has been reported to be 18–50 % while that of post traumatic stress disorder (PTSD) is reported to be 2–3 times higher than the general population. The risk of these symptoms is higher in older people, women, those with lower education level, previous history of psychiatric symptoms, when there is inconsistency between caregivers preference and what is actually required of them, and discordance between preferred and perceived decision making, to name a few [4]. In reporting factors associated with increased stress in parents/ caregivers, most authors have used both qualitative methods and quantitative tools such as Parental Stress Score in PICU (PSS: PICU) [5]. The PSS: PICU developed by Carter and Miles is a validated instrument comprising of 37 items designed to measure the overall stress response of parents to potential sources of stress when their child is hospitalized in the ICU. Each item is scored 1 (not stressful) to 5 (extremely stressful) or as 0 (not experienced). The possible range of scores is from 0 to 185. The stressors are grouped under seven dimensions and include child’s behavior and emotions, J. Sankar (*) : R. Lodha : S. K. Kabra Department of Pediatrics, All India Institute of Medical Sciences, New Delhi 110029, India e-mail: [email protected]
parental role alteration, procedures, sights and sounds, staff communication, staff/resident behaviors and child’s appearance. Apart from the above stressors, scores are also taken in three categories related to experiences in PICU, child behavior, and things they see or hear [5]. Most of the data described above using qualitative or quantitative methods on parental stressor in PICU, is from resource replete countries [1–3]. As family preferences and clinicians’ delivery of care are affected by regional, religious and cultural influences, the experience from resource-limited countries such as India may be different. Unfortunately, the information from these settings is limited [6, 7]. A study on 112 parents in Malaysia revealed that alteration in parental role was the most stressful factor for parents [6]. Parents’ gender, previous experience and severity of illness possibly influenced the stress response. In a study on parental stressors from Ludhiana, India, the authors observed that there is significant stress among parents of children admitted to PICU and stress factors are different from those reported from developed countries [7]. Mothers of children admitted were more stressed than the fathers’ and the child’s response to pain was also a very stressful experience for the family members. Thus, given the paucity of data from developing countries, there is a need to generate more information on this important topic so as to plan interventions and bundles to cope with them. In this issue of the Journal, Aamir et al. [8] report their experience of assessment of parental stress using PSS: PICU. This study is important as it provides important information regarding stressors in a government set up with limited resources. In this prospective observational study, 49 parents were included and the PSS: PICU was calculated using a translated version of the English one. Although the numbers were small, the authors noted the PICU environment and status of intubation to be most stressful to the parents. The findings, therefore, are similar to what have been reported
1142
from developed countries and it appears that, irrespective of the set up, procedures performed on children and the sights and sounds of the PICU environment are major stressors for parents. However, the results of this study may be affected by factors such as prior mental health of the parents that was not assessed using recommended methods and also by using the Hindi version of the questionnaire without assessing its reliability using appropriate statistical methods. This is important as prior poor mental health of parents predisposes them to developing depressive symptoms and PTSD much more commonly than those without such predisposition [4]. It is equally important to test the reliability of any questionnaire or instrument developed in a different set up before using it in that set up as while translating the questionnaire the meanings may change and this would affect the external validity and limit generalizability of the results [6]. Nevertheless, this study gives an insight into the factors causing parental stress in government organizations with limitation of staff and resources and may be applicable to most units with similar backgrounds. It also adds to information on parental stress factors in our country so that optimal interventions or bundles could be developed to cope with such stress. Interventional studies to reduce the burden of psychological symptoms in family members have shown that providing standardized end-of-life family conferences to encourage family participation and a bereavement packet significantly decreased symptoms. Offering spiritual support during ICU stay, access to a counselor, providing a place to be alone, help with financial problems, support group, unrestricted access to patient are few other interventions that have shown to be helpful in coping with stress and reducing psychological symptoms [4]. Although there are no randomized controlled trials in pediatrics on the effect of these interventions, in a systematic review on impact of critical illness on families, the authors concluded that families of ill and injured children would benefit from physicians catering to sick children acquiring enhanced knowledge and sensitivity about family communication and dynamics [3]. Thus, future research should be aimed at evaluating these and other interventions that help reduce the burden of psychological symptoms in parents of critically ill or injured children. And for this purpose, more methodically rigorous studies (using validated questionnaire)
Indian J Pediatr (November 2014) 81(11):1141–1142
from different regions of the country are needed to identify factors common to our subcontinent. Other areas of research in this topic should include follow-up studies to estimate the burden of psychiatric illnesses such as PTSD and depression in parents after discharge/death form the ICU. There is no information available on the short term and long-term effects of PICU admission on parents’ mental health and the burden of psychological symptoms due to such admission. The authors would like to conclude by emphasizing that parental stress is common in PICUs, irrespective of the setting. The environment, painful procedures, prior mental health and demographic characteristics of the population are likely to affect the level of stress in the parents of critically ill or injured child. Interventions to cope with the stress should be incorporated and implemented right from the time of admission to help parents cope with the acute stress. Conflict of Interest None. Source of Funding None.
References 1. Miles MS, Carter MC. Coping strategies used by parents during their child’shospitalization in an intensive care unit. Child Health Care. 1985;14:14–21. 2. LaMontagne LL, Pawlak R. Stress and coping of parents of children in a pediatric intensive care unit. Heart Lung. 1990;19:416–21. 3. Shudy M, de Almeida ML, Ly S, Landon C, Groft S, Jenkins TL, et al. Impact of pediatric critical illness and injury on families: a systematic literature review. Pediatrics. 2006;118:S203–18. 4. Gries CJ, Engelberg RA, Kross EK, Zatzick D, Nielsen EL, Downey L, et al. Predictors of symptoms of post traumatic stress and depression in family membersafter patient death in the ICU. Chest. 2010;137:280–7. 5. Carter MC, Miles MS. The parental stressor scale: pediatric intensive care unit. Matern Child Nurs J. 1989;18:187–98. 6. Nizam M, Norzila MZ. Stress among parents with acutely ill children. Med J Malaysia. 2001;56:428–34. 7. Pooni PA, Singh D, Bains HS, Misra BP, Soni RK. Parental stress in apaediatric intensive care unit in Punjab. India J Paediatr Child Health. 2013;49:204–9. 8. Aamir M, Mittal K, Kaushik JS, Kashyap H, Kaur G. Predictors of stress among parents in pediatric intensive care unit: a prospective observational study. Indian J Pediatr. 2014. Doi: 10.1007/s12098-0141415-6.
