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Medical traumatic stress symptoms in pediatric patients on dialysis and their caregivers: a pilot study.

The experience of being told that initiating dialysis is essential to maintain life can be a devastating, life-altering experience for children diagnosed with kidney failure and their caregivers. Further, dialysis treatment, especially hemodialysis (HD), is physically invasive and can be painful, with some patients and caregivers expressing fears regarding access and/or directly experiencing dialysis-related adverse events. Such circumstances may result in patients and caregivers experiencing "medical traumatic stress" and have direct implications for nephrology nursing practice.

Medical traumatic stress is a well-substantiated area of research in pediatric medical populations focused mostly on acute-onset, distressing, life-threatening conditions (such as cancer) and emergent events (such as accidental injury) (Landolt, Vollrath, Gnehm, & Sennhauser, 2009; Marme et al., 2002; Shemesh et al., 2000; Stuber & Shemesh, 2006). Medical traumatic stress is described as "a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences" (Center for Pediatric Traumatic Stress [CFFS], 2004, p. 11). Medical traumatic stress symptoms are based on the core symptoms of post-traumatic stress disorder (PTSD) (American Psychological Association [APA], 2000), but medical traumatic stress is not considered a disorder itself (Kazak et al., 2006; Manne, 2009).

Medical traumatic stress incidence rates range between 5% to 15% for moderate to severe symptoms across various pediatric illnesses (Landolt, Vollrath, Ribi, Gnehm, & Sennhauser, 2003), with medical traumatic stress reported by a small but clinically significant number of youth with chronic medical conditions and their caregivers (Landolt et at., 2003; Ribi, Vollrath, Sennhauser, Gnehm, & Landolt, 2007). Medical traumatic stress symptoms are associated with illness/injury and personality characteristics, such as persistent unmanaged pain, life-threatening events during illness, and patient/caregiver perception of threat/severity of illness (Manne, 2009). Medical traumatic stress symptom screening should include both child and caregiver perspectives because reports typically differ (Hawkins & Radcliffe, 2006; Shemesh et al., 2005). Further, caregivers should be screened for medical traumatic stress symptoms as a result of vicarious and/or direct exposure to their child's medical trauma, which can influence the caregiver's perception of a child's medical traumatic stress reactions and his or her ability to help the child cope (Manne et al., 2002). Finally, children's levels of cognitive, emotional, and language development can impact their response when exposed to experiences typically associated with medical traumatic stress reactions. For a thorough review of the impact of developmental aspects and processes that may be protective or risk factors in response to stress associated with medical experiences, please refer to Salmon and Bryant (2002).

The Potential for Medical Traumatic Stress in Pediatric Patients with Kidney Failure

It was hypothesized that pediatric patients with kidney failure and their caregivers may be at-risk for medical traumatic stress due to the need for invasive, life-saving treatment; intensive, burdensome medical management involving repeated exposure to painful procedures; and risk of death or physical injury. This patient population is expected to increase and have more co-morbid, complex health issues (Jetton, Okcu, Dreyer, & Goldstein, 2009) due to medical advances improving survival rates. Improved patient longevity resulting from dialysis treatment advances may compound risk for experiencing medical traumatic stress, which may become insidious if unrecognized and untreated. This study aimed to specifically investigate whether medical traumatic stress occurs in a pediatric dialysis population.

Methods

Patients 2 through 25 years of age undergoing any form of dialysis for at least two months or who had previously been on dialysis but had undergone renal transplantation and their caregivers were eligible to enroll in the study. Patients undergoing dialysis on a brief basis (for example, for acute renal injury or illness) were ineligible to enroll. For patients with identified cognitive delays, only caregivers were eligible to enroll. In the researcher's dialysis unit, there are many young adult patients. Because the pilot study involved surveying a convenience sample, the oldest patient to participate in the survey was 25 years old. The Baylor College of Medicine Institutional Review Board approved the study prior to patient enrollment.

After obtaining informed consent and minor-aged patient assent, each patient (8 to 25 years of age) and caregiver participant completed a modified University of California--Los Angeles PTSD-Reaction Index (UCLA PTSD-RI) (Steinberg, Brymer, Decker, & Pynoos, 2004) to retrospectively assess for dialysis-related medical traumatic stress. This instrument is one of the most widely used measures for assessing reactions to trauma in clinical and research settings and has sound psychometric properties. A thorough review of the instrument's properties can be found in Steinberg et al. (2004). Patient self-report (PSR), caregiver self-report (CSR), and caregiver proxy (Cproxy, for patients aged 2 to 25 years) versions (Spanish available) are available, with each containing a 13-item trauma checklist and 22 items rating PTSD symptom presence and degree across three clusters of symptoms (such as Intrusiveness/Re-experiencing [IR], Avoidance [AV], and Hyperarousal [mY]) following PTSD diagnostic criteria from the Diagnostic and Statistical Manual of Mental Disorders, 4th edition, Text Revision (DSM-IV-TR) (see Table 1) (APA, 2000). Patients completed (PSR) the trauma checklist and symptom ratings based on recall of their experiences initiating dialysis and being diagnosed with kidney failure, while caregivers did so based on their own reaction (CSR) and their child's reaction (Cproxy) to these events.

The UCLA PTSD-RI yields a Total Severity Score (TSS) with the cut-off of 38 points or more, indicating possible medical traumatic stress. Item responses are dichotomously coded (yes/no) whether dialysis initiation was perceived as traumatic, peritraumatic dissociation occurred, and whether partial or full DSM-IV-TR PTSD criteria were met. Items comprising each symptom cluster (IR, AV, HY) are similarly coded based on meeting DSM-IV-TR cluster-specific criteria and can be totaled to create a severity score for each cluster. Comparisons of CSR, Cproxy, and PSR medical traumatic stress TSS, symptom cluster severity scores, and the presence of cluster symptoms, as well as comparisons among the respondent groups based on demographic and medical factors, were performed using one-way analysis of variance (ANOVA), independent t-tests, and Chi-square analysis. When appropriate, nonparametric analyses were conducted. A p-value of less than 0.05 was considered significant.

Results

Twenty-eight patients (54% male; n = 15) aged 3 to 23 years (mean = 16.9 years; SD = 4.5) and 17 caregivers participated, yielding 13 patient-caregiver dyads for which PSR, CSR, and Cproxy reports are available. Patient demographic and medical information is based on data from 28 patient participants plus three patients with caregiver-only participation (N = 31) (see Table 2). Medical traumatic stress-specific results are based on the 28 patient and 17 caregiver participants (see Table 3). Thirty-nine percent of the sample self-identified as African American (n = 12), 32% as Hispanic (n = 10), 23% as Caucasian (n = 7), and 6% as Other (n = 2). Median dialysis vintage was 25.0 months (range 3 to 126 months), with 32% on HD (n = 10), 32% with transplant (n = 10; 4 HD and 6 peritoneal dialysis [PD] previously), 26% on PD (n = 8), and 10% on home HD (n = 3). Mean patient age at initiation of dialysis was 13.1 years (SD = 5.3). Approximately 650/0 (n = 20) presented for medical care already in kidney failure, whereas 35% (n = 11) had received some form of chronic kidney disease (CKD) management in the researcher's program prior to progressing to kidney failure.

Nearly 48% of patients and 78% of caregivers recalled initiation of dialysis as traumatic. Approximately 65% of caregivers reported feeling that initiating dialysis was traumatic for their child. Significantly more caregivers (78%) than patients (39%) recalled experiencing peritraumatic dissociation (p = 0.02). Four caregiver, three patient, and two caregiver-proxy ratings yielded TSS scores of 38 points or more. Two caregivers and two patients recalled symptoms that would have met criteria for a PTSD diagnosis.

Demographic Factors

Hispanic patients had significantly higher average TSS than African-American patients (p = 0.02). Analysis of the data revealed that relatively more Hispanic patients met criteria for experiencing IR and HY symptoms compared to African-American and Caucasian patients (for both IR and HY: 830/0 [n = 5/6] vs. 17% [n = 1/6], and 0% [n = 0/6]), whereas relatively more caregivers of African-American and Caucasian patients than those of Hispanic patients met criteria for experiencing peritraumatic dissociation (460/0 [n = 6/13] each for African-American and Caucasian vs. 80/0 [n = 1/13]). Small group sizes prohibited significance testing using Chi-square analysis.

Medical Factors

Younger patient age at initiation of dialysis was associated with higher average CSR and Cproxy TSS (r = -0.60, p = 0.01; r = -0.53, p = 0.03, respectively) and with caregivers who met criteria for experiencing IR symptoms (t = -2.36, p = 0.04). Patients of these caregivers were on average 8.5 years old (SD = 6.6 years) compared to 13.9 years (SD = 2.6 years) for those not meeting criteria. More caregivers of children who presented in kidney failure than caregivers of patients followed for CKD reported initiating dialysis as traumatic (86% [n = 12/14] vs. 14% [n = 2/14]). Treatment modality comparisons (HD vs. PD) were not significantly different across CSR, Cproxy, or PSR TSS; however, patients on PD had higher average PSR HY cluster scores (Z = 1.54, p = 0.02), with mean HY score of 10.7 (SD = 4.0) vs. 4.0 (SD = 4.4) for HD.

Discussion

Nearly half of children and two-thirds of caregivers recalled initiating dialysis as traumatic. Caregivers were more likely to indicate that initiating dialysis was both traumatic for themselves and their child, validating previous findings that caregivers are at-risk for experiencing both direct and vicarious trauma (Landolt et al., 2003). Significant levels of medical traumatic stress were reported by approximately 12% of the patients, 22% of the caregivers, and 13% of the caregivers rating their children, with two of the caregiver and two of the patient ratings satisfying diagnostic criteria for PTSD. These results are comparable to medical traumatic stress incidence rates reported in the literature (Landolt et al., 2003).

Examination of demographic factors indicated that Hispanic patients tended to recall more intrusive, distressing thoughts; hyperarousal; and hypersensitivity to their environment, whereas African-American and Caucasian caregivers tended to recall feeling more disconnected from their experiences with their child and feeling as if what was happening was unreal or a bad dream. The younger the child at initiation of dialysis or presenting for care in kidney failure was associated with caregivers 1) experiencing a higher degree of medical traumatic stress symptoms; 2) sensing their child did too; 3) having intrusive, distressing thoughts about dialysis; and 4) describing dialysis initiation as traumatic. Treatment modality was not associated with presence and severity of medical traumatic stress at dialysis initiation; however, patients on PD recalled experiencing significantly more hyperarousal, hypervigilance, and physical hypersensitivity than patients on HD. Although seemingly counter to expectation, PD occurs at home with patients relying on newly trained caregivers who may not yet be comfortable with procedures. In contrast, patients on HD have ongoing, direct access to well-trained nurses and an entire dialysis care team that can provide psychosocial and other medical support.

Conclusion

Despite the small sample size, use of retrospective recall of experiences, and preliminary nature of the results, findings demonstrate initiating dialysis can be associated with medical traumatic stress in this pediatric population and warrant further investigation. Medical traumatic stress may go unrecognized, and screening for medical traumatic stress in patients and their caregivers is recommended.

Given the wealth of information on medical traumatic stress in other pediatric conditions and prevention/ intervention efforts already underway (Pai & Kazak, 2006), this literature could inform similar efforts for pediatric patients on dialysis. At this point in time, these findings have direct implications for nephrology nursing practice. Awareness of medical traumatic stress can increase nursing staff's sensitivity to patient and family experiences, prompt medical team consultation and referral for increased psychosocial support, and alter perceptions and actions of staff in knowing how to best work with patients and caregivers. For example, patients and caregivers who act out and seem oppositional or "difficult" may be distressed as a result of intense anxiety/ fear or other medical traumatic stress symptoms (such as irritability, hypervigilance, hypersensitivity emotionally and physically, and avoidance). Rather than reacting with frustration or trepidation, conveying empathy and patience in verbal exchanges, inviting them to "work as a team" with you, allowing them to "share control" regarding the pacing of procedures, and offering to explain before doing can be quite effective and help to establish rapport and trust more quickly. Such approaches can also help to alleviate patient and caregiver fear/distress, which can, in turn, promote more adaptive coping responses and cooperation, as well as overall adjustment as patients and caregivers adapt to life with dialysis.

Finally, more in-depth examination of medical traumatic stress in pediatric patients on dialysis is needed to better identify who is most at risk for experiencing such reactions and what interventions are most suitable. Such efforts should include the role of nephrology nurses because they are at the forefront of direct patient care and can help identify and support those experiencing medical traumatic stress. Such involvement will promote patient health-related quality of life and improve medical outcomes for children with kidney failure.

Goal

To provide an overview of medical traumatic stress in pediatric patients receiving hemodialysis and peritoneal dialysis and their caregivers.

Objectives

1. Define medical traumatic stress as it relates to pediatric patients and their caregivers.

2. Discuss the medical traumatic stress that chronic kidney disease may have on pediatric patients and their caregivers.

Acknowledgments: The author gratefully acknowledges and thanks the patients and caregivers from the Texas Children's Hospital Renal Service who shared their personal experiences and without whom this study and findings would not be possible. Much gratitude and appreciation is extended to Stuart L. Goldstein, MD, for his expertise and helpful comments.

Author's Note: Work originally presented as an abstract (poster) at the 31st Annual Dialysis Conference, February 20-22, 2011, Phoenix, AZ.

Statement of Disclosure: The author reported no actual or potential conflict of interest in relation to this continuing nursing education activity.

References

American Psychological Association (APA). (2000). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.

Center for Pediatric Traumatic Stress (CPTS). (2004). Impact of traumatic medical events on children, parents, and healthcare providers. Retrieved from http://www.nctsnet.org/sites/default/ files/assets/pdfs/MedicalTraumaticStress.pdf

Hawkins, S.S., & Radcliffe, J. (2006). Current measures of PTSD for children and adolescents. Journal of Pediatric Psychology, 31(4), 420-430. doi:jsj039 [pii] 10.1093/jpepsy/jsj039

Jetton, J.G., Okcu, M.F., Dreyer, Z.E., & Goldstein, S.L. (2009, October-November). Pediatric cancer survivors are at high risk for CKD. Paper presented at the American Society of Nephrology, San Diego, CA.

Kazak, A.E., Kassam-Adams, N., Schneider, S., Zelikovsky, N., Alderfer, M.A., & Rourke, M. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4), 343-355. doi:jsj054 [pii]10. 1093/jpepsy/jsj054

Landolt, M.A., Vollrath, M.E., Gnehm, H.E., & Sennhauser, EH. (2009). Posttraumatic stress impacts on quality of life in children after road traffic accidents: prospective study. Australian and New Zealand Journal of Psychiatry, 43(8), 746-753. doi:913300084 [pii] 10.1080/00048670903001919

Landolt, M.A., Vollrath, M., Ribi, K., Gnehm, H.E., & Sennhauser, F.H. (2003). Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. Journal of Child Psychology and Psychiatry, 44(8), 1199-1207.

Manne, S. (2009). Commentary: Adopting [corrected] a broad perspective on posttraumatic stress disorders, childhood medical illness and injury. Journal of Pediatric Psychology, 34(1), 22-26. doi:jsn042 [pii] 10.1093/jpepsy/ jsn042

Manne, S., DuHamel, K., Nereo, N., Ostroff, J., Parsons, S., Martini, R.,... Redd, W.H. (2002). Predictors of PTSD in mothers of children undergoing bone marrow transplantation: the role of cognitive and social processes. Journal of Pediatric Psychology, 27(7), 607-617.

Pal, A.L., & Kazak, A.E. (2006). Pediatric medical traumatic stress in pediatric oncology: Family systems interventions. Current Opinions in Pediatrics, 18(5), 558-562. doi:10.1097/01.mop. 0000245358.06326.e9 00008480-20 0610000-00014 [pii]

Ribi, K., Vollrath, M.E., Sennhanser, F.H., Gnehm, H.E., & Landolt, M.A. (2007). Prediction of posttraumatic stress in fathers of children with chronic diseases or unintentional injuries: A six-months follow-up study. Child and Adolescent Psychiatry and Mental Health, 1(1), 16. doi:1753-20001-16 [pii] 10.1186/1753-2000-1-16

Salmon, K., & Bryant, R.A. (2002). Post-traumatic stress disorder in children. The influence of developmental factors. Clinical Psychology Reviews, 22(2), 163-188.

Shemesh, E., Lurie, S., Stuber, M.L., Emre, S., Patel, Y., Vohra, P.,... Schneider, B.L. (2000). A pilot study of posttraumatic stress and nonadherence in pediatric liver transplant recipients. Pediatrics, 105(2), E29.

Shemesh, E., Newcorn, J.H., Rockmore, L., Schneider, B.L., Emre, S., Gelb, B.D.,... Yehuda, R. (2005). Comparison of parent and child reports of emotional trauma symptoms in pediatric outpatient settings. Pediatrics, 115(5), e582-589, doi:115/5/e582 [pii] 10.1542/peds.2004-2201

Steinberg, A.M., Brymer, MJ., Decker, K.B., & Pynoos, R.S. (2004). The University of California at Los Angeles Post-Traumatic Stress Disorder Reaction Index. Current Psychiatry Reports, 6(2), 96-100.

Stuber, M.L., & Shemesh, E. (2006). Posttraumatic stress response to life-threatening illnesses in children and their parents. Child and Adolescent Psychiatry Clinics of North America, 75(3), 597-609. doi:S1056-4993(06)00 026-5 [pii] 10.1016/j.chc.2006.02.006

Shari K. Neul, PhD, is a Licensed Psychologist and Assistant Professor, Renal Section, Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital, Houston, TX. She may be contacted via e-mail at skneul@texaschildrens.org
Table 1
Medical Traumatic Stress Symptom Descriptions as Based on
Post-Traumatic Stress Disorder Criteria

Criteria                             Symptom Description

Peritraumatic           Feel as if what is happening is unreal and
Dissociation            may enter trance-like state to prevent
                        intense distress. Feel as if disconnected
                        from own body, thoughts, and experiences, and
                        may not be sure if the event actually
                        occurred.

Intrusive/              Aspects of traumatic event re-experienced via
Re-experiencing (IR)    intrusive, distressing memories, nightmares,
                        flashbacks with intense emotional upset, and
                        physical reactivity.

Avoidance (AV)          Attempts to avoid thoughts, people, and
                        situations that remind you of the distressing
                        event. Feeling numb or detached from the
                        situation and others with difficulty
                        remembering aspects of event.

Hyperarousal (HY)       Hypervigilant of surroundings and
                        hypersensitivity to physical sensations.
                        Easily startled, prone to irritability and
                        outbursts, difficulty sleeping and
                        concentrating.

Source: APA, 2000.

Table 2
Patient Demographic Information

Demographic Variable                   Summary Measure(s)

Ethnicity                                  Percentage
  African American               12           38.7
  Hispanic                       10           32.3
  Caucasian                       7           22.6
  Other                           2            6.5
Dialysis Vintage                             Months
  Median (range)                 31      25.0 (3 to 126)
Modality                                   Percentage
  In-center hemodialysis        100           32.3
  Peritoneal dialysis             8           25.8
  Home hemodialysis               3            9.7
  Transplant                     10           32.3
Age at Dialysis Initiation                    Years
  Mean (SD)                      31        13.1 (5.3)
ESRD History                               Percentage
  Incident case                  20           64.5
  Medically managed              11           35.5

Table 3
Summary of Medical Traumatic Stress (MTS) Findings by
Respondent Group

                                          Respondent Group
                                                N(%)

                              Patient       Caregiver      Caregiver
                            Self-Report    Self-Report       Proxy
                               (PSR)          (CSR)         (Cproxy)

MTS Symptoms
Dialysis initiation          12 (48.0)      14 (77.8)      11 (64.7)
Recalled as traumatic                      ESRD History
                                               (e)

Peritraumatic                10 (40.0)      14 (77.8)        N/A *
  dissociation                              Ethnicity
  experienced (a)                              (b)

Individuals Who Met Symptom Cluster Criteria
Intrusiveness/                6(24.0)       10(55.6%)       5(31,3%)
Re-experiencing (IR)         Ethnicity     Patient age
                                (b)            (d)

Avoidance (AV)                3(12.0)        2(11.1%)       2(12.5%)

Hyperarousal (HY)             6(24.0)        6(33.3%)       5(31.3%)
                             Ethnicity
                                (b)
                            Modality (f)

Total Severity Score          3(10.7)        4(14.3)         2(7.1)
(TSS)-Cut-Off Met            Ethnicity       Dialysis       Dialysis
                                (b)         start age      start age
                                               (c)            (c)

Note: MTS-specific results based on 28 patient and 17 caregiver
respondents.

ESRD = end stage renal disease; N/A = not available; SD = standard
deviation; Z = z-score.

* Criteria met for dissociation not assessed in Cproxy version due to
nature of dissociation being difficult for caregiver to observe in
child.

(a) Statistically significantly more caregivers than patients
recalled experiencing peritraumatic dissociation
([X.sub.2] = 5.56, p = 0.02).

(b) Statistically significantly higher TSS scores for Hispanic vs.
African-American patients (Mean TSS difference =16.5 points; F = 4.42,
p = 0.02).

(c) Indicates age at dialysis initiation significantly correlated with
CSR TSS (r = -0.60, p = 0.01) and Cproxy TSS (r = 0.53, p = 0.03).

(d) Indicates younger patient age at dialysis initiation for
caregivers who met IR Criteria (8.5 years [SD = 6.6 years]) vs.
caregivers who did not meet IR Criteria (13.9 years [SD = 2.6 years]).

(e) Indicates more acute onset ESRD patient caregivers (12/14 [85.7%])
vs. clinic/followed CKD patient caregivers (2/14 [14.3%]) rated
initiating dialysis as traumatic.

(f) Indicates statistically significantly higher average HY cluster
scores (z = 1.54, p = 0.02) for patients on peritoneal dialysis (10.7
[SD = 4.0]) vs. patients on hemodialysis (4/.0 [SD = 4.43).
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Title Annotation:Continuing Nursing Education
Author:Neul, Shari K.
Publication:Nephrology Nursing Journal
Article Type:Report
Date:Nov 1, 2012
Words:3477
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