Parent-Child
Interactions During Cancer Treatment-Related Procedures: What is Still Missing?
Jinbing
Bai
Jinbing
Bai, School of Nursing, the University of
North Carolina at Chapel Hill, Chapel Hill, NC, United States
Correspondence to: Jinbing Bai, PhD(c),
MSN, RN, School of
Nursing, the University of North Carolina at Chapel Hill, Carrington Hall,
CB#7460, Chapel Hill, NC 27599, United States.
Email: jbai7@email.unc.edu
Telephone: +1-919-265-8580
Received: December 24,
2014
Revised: March 23, 2015
Accepted: March 28, 2015
Published online: May 13, 2015
ABSTRACT
Children
being treated for cancer receive a variety of treatment-related procedures,
such as lumbar punctures, bone marrow aspirations and port starts. These
invasive and painful procedures can negatively influence children with cancer
in the short- and long-term run. Parents play important roles in physically and
emotionally caring for their child during these procedures and parent-child
interactions can significantly influence children’s experiences during painful
procedures. The purpose of this editorial was to discuss the impact of
parent-child interactions during painful procedures and future research
directions through the following aspects: the impact of treatment-related
painful procedures in children with cancer, parent-child interactions during cancer
treatment-related procedures and observational measures of parent-child
interactions during painful procedures.
© 2015 ACT. All
rights reserved.
Key words: Parent-child interaction; Treatment procedure;
Observational measure; Childhood cancer
Bai J. Parent-Child
Interactions During Cancer Treatment-Related Procedures: What is Still Missing?
International Journal of Neurology Research 2015; 1(2): 39-42 Available from: URL:
http://www.ghrnet.org/index.php/ijnr/article/view/992
INTRODUCTION
Cancer, a major public health problem in the United States (US), is the
second most common cause of death in children and adolescents[1].
Each year, approximately 12,400 children are diagnosed with cancer in the US[2,3].
The incidence of childhood cancer has been increasing by 0.5% per year[1].
With the development of multi-modal therapies (e.g., surgery, chemotherapy,
radiation therapy and hematopoietic stem cell transplant) and supportive
nursing care, the 5-year survival rate for children with cancer has increased
from 58% during the mid-1970’s to 83% today in the US[2].
Children being
treated for cancer require regular monitoring of disease progression, treatment
effectiveness and treatment side effects. This monitoring is often completed by
laboratory assays of body tissue samples that are obtained through several
invasive procedures: lumbar punctures (LPs), bone marrow aspirations (BMAs),
and venous access device puncture (also referred to as a “port start” when used
to establish intravenous access to deliver chemotherapies and supportive care
agents)[2,4]. These invasive procedures have negative impact on
children with cancer and their parents. Studies indicated that appropriate
parent-child interactions can significantly benefit children’s experiences
about treatment-related procedures (e.g., lower pain and distress and more
cooperation)[5,6]. This editorial aimed at addressing the impact of
parent-child interactions during painful procedures through the following
aspects: the impact of treatment-related procedures on children with cancer,
parent-child interactions and observational measures of parent-child
interactions during painful procedures.
IMPACT OF
TREATMENT-RELATED PROCEDURES IN CHILDREN WITH CANCER
Cancer treatment-related procedures can negatively influence children
with cancer and their parents. Children reported that treatment-related
procedures could be more traumatic than cancer itself[7,8]. They
experienced co-occurring symptoms related to these procedures, such as pain,
fatigue and distress[9-12]. Previous study even indicated that
unrelieved pain could cause more pain-related time in bed and sleep
disturbances for children with cancer[7], which can significantly
decrease children’s quality of life[13]. Additionally, memories of
procedure-related pain and distress can make the anticipation of subsequent
treatment-related procedures more difficult[14] and can have
negative consequences for childhood cancer survivors, such as avoidance of
regular primary and long-term follow-up care[15,16]. Moreover,
experiencing their child’s treatment-related procedures has been associated
with the development of anxiety and post-traumatic stress symptoms in parents
of children with cancer[17].
Owing to the
detrimental effects of treatment-related procedures, clinical practice has
significantly changed to improve the impressions they leave on children with
cancer and their parents. In particular, conscious sedation or general
anesthesia is applied prior to LPs and BMAs, especially when multiple
procedures will be performed; topical anesthetics are also applied to the site
of port starts[3]. Nevertheless, children still express pain and
distress during these invasive procedures. These painful procedures can occur in
clusters within a relatively short period of time, for example, during
diagnostic evaluation and treatment initiation (e.g., LPs and BMAs) and
repeated at regular intervals as determined by the child’s clinical condition
and treatment protocol requirements (e.g., port starts). Almost all the
children have to suffer procedure-related pain and distress from the
combinations of these procedures. Compared with LPs and BMAs, repeated
procedures (e.g., port starts) have not been amply explored as providing opportunities
for improving the cancer experience for children and their parents. Thus, more
research is needed to identify parent emotional and behavioral responses and
parent-child interactions that contribute to child treatment responses (i.e.,
pain, distress and cooperation) during repeated procedures and potentially in
the long-term run.
PARENT-CHILD INTERACTIONS DURING INVASIVE
PROCEDURES
Parent presence during invasive procedures has been widely studied with
the conclusion that a shift should be made from studying the mere influence of
parent presence to understanding parent-child behavioral interactions during
procedures[18,19]. For children being treated for cancer, parent
behaviors can interactively influence child pain and distress in relation to invasive
procedures. Frank and colleagues found that mother behaviors could account for
53% of the variance in child distress during immunizations[14].
Blount et al. investigated parent-child interactions during LPs and BMAs, and
found that parent coping promoting behaviors (refer to behaviors that can
promote child’s coping), including humor, commands to use coping strategies and
nonprocedural talk, can reduce child distress and increase child coping levels[5,20].
In contrast, parent distress promoting behaviors (refer to behaviors that can
promote child’s distress), including verbalization of empathy, criticism,
apology, giving control to the child and reassurance, can promote child
distress during LPs and BMAs[5,20].
Among parent
distress-promoting behaviors, reassurance and empathy have been identified as
the primary parent vocalizations toward their child during invasive procedures[21].
However, previous studies reported mixed findings for both of these verbal
behaviors. Firstly, Cline and colleagues[6] found that more parental
verbalizations of empathy and reassurance were associated with less pain and
distress during port starts. Additionally, McMurtry and colleagues[22,23]
proposed that reassurance is a complex concept with sub-concepts that could cause
contradictory outcomes in children undergoing immunizations. Likewise, Penner et
al[24] reconceptualized parent empathy comments into two
categories (i.e., empathy concern and empathy distress) and found that parent
empathy concern had negative correlations with child’s distress, and parental
empathy distress showed positive correlations with child’s distress during port
starts in children with cancer. Consequently, investigations should be
undertaken to clarify these mixed findings about parent-child interacting
behaviors during invasive treatment-related procedures.
Compared with
the study of parent verbal behaviors during cancer treatment-related painful
procedures, parental nonverbal behaviors are rarely explored. Until now, only
few studies concentrated on the impact of parent nonverbal behaviors on
children’s treatment responses during invasive procedures. Specifically,
Peterson and colleagues developed a coding system to capture parent distance
and touch toward their child during cancer procedures and found that parental
interpersonal distance and supportive touch could significantly reduce
children’s distress and pain during invasive procedures[25]. This
result suggested that parental nonverbal behaviors should be adequately studied
with verbal behaviors together so as to support parental care during invasive
procedures.
It is
undeniable that previous studies have provided explicit evidence regarding the
importance of parent-child interacting behaviors during painful procedures.
Previous studies have paid much more attention on the parent-child interactions
before, during and after the procedures. However, children being treated for
cancer often receive repeated procedures (e.g., port starts); the longitudinal
trajectories of parent-child interactions and the influence of these behaviors
on children’s treatment responses (e.g., pain and distress) and later childhood
outcomes (e.g., healthcare attrition and brain changes) are rarely studied. In
addition, the majority of parent-child interaction studies depended on the
correlational analysis rather than newer methods, such as time-window
sequential analysis[19]. Thus, a longitudinal study of parent-child
interacting behaviors during repeated procedures and the influence of these
behaviors on child treatment responses (i.e., pain, distress and cooperation)
will fill the gap regarding how parent behaviors adjusted through the
trajectories of cancer treatment as well as how these behaviors influence child
treatment responses over time.
OBSERVATIONAL
MEASURES OF PARENT-CHILD INTERACTIONS DURING PAINFUL PROCEDURES
The importance of parent-child interactions during invasive procedures
arises from findings of strong relationships between parental behaviors and
child coping behaviors in previous studies. Clinical applications and research
in this area require ways to accurately and reproducibly categorize
parent-child interactions during invasive procedures. Use of different
parent-child interactions coding systems could lead to inconsistent findings in
the literature on parent-child interaction studies. Thus, choosing a
comprehensive and appropriate observational coding system is of great
importance to study the influence of parent interacting behaviors on child’s
pain, distress and cooperation during cancer treatment-related procedures.
Observational measures completed by trained coders or observers are frequently
used in the parent-child interaction studies[26]. Compared with
other methods (i.e., self-report and proximal-reported measures), observational
measures of parent-child interactions are more expensive and time-consuming in
terms of the length of the training, data collection and coding processes[27,28].
However, appropriate use of these observational measures can generate valuable
and objective data about children, parents and healthcare providers in relation
to invasive procedures[5,6]. Until now, multiple observational
coding systems have been developed and widely used in the parent-child
interaction studies. Reliability and validity of these coding systems have been
addressed as well.
Two types of
observational coding systems are identified: “cure” systems that meant to
conduct measurements of instrumental behaviors (i.e., task-focused) and “care”
systems that meant to conduct measurements of affective behaviors (i.e.,
emotional-based)[29,30]. In the context of parent-child
interactions, these two systems reflect child’s need to know and understand
(i.e., to “cure”) and child’s need to feel known and understood (i.e., to “be
cared for”). Parent “cure” behaviors, such as giving information, distraction
and mandating coping strategies, can be captured by available coding systems;
parent “care” behaviors, such as empathy and touch, have been explored as well,
but parent emotion is rarely studied including in the context of invasive
treatment-related procedures for children with cancer. The pain and distress
associated with invasive procedures cannot be relieved by either
instrumental-based or affective-based parent behaviors. An observational coding
system, which attempts to capture both types of behaviors, therefore, should be
constructed in future studies.
Besides the
definitive distinctions between “cure” and “care”, observational coding system
can be distinguished from each other with regard to several other criteria: the
population (i.e., To whom can the system be applied?), clinical relevance
(i.e., Is the system specifically designed for studying communications/interactions during medical procedures?),
observational strategy (i.e., Is the coding done from video, audiotape, direct
observation, or literal transcripts?), reliability and validity (i.e., Has the
system been shown to reliable and valid with regard to capturing the targeted
behaviors?) and channels of communicative behavior (i.e., Does the system have
a plan for coding verbal behavior, nonverbal behavior, or both?)[30].
A systematic analysis of the available observational measures for coding
parent-child interactions that specifically examines their strengths and
limitations is essential to the development of theory-based observational
measures for use in future research.
Although the
observational measures used in previous studies state clear operational
definitions to promote validity of the conclusions about the study results, how
to conceptualize aspects of parental behaviors, such as reassurance and
empathy, is still unclear. Importantly, most coding systems were constructed on
the basis of clinical observations or in-depth literature review rather than
theory. Therefore, theory-based observational coding systems should be
developed to understand and improve parent-child interactions during invasive
procedures as a means to improving child pain, distress and cooperation in the
short term and potentially anticipatory pain and anxiety in the future.
FUTURE
DIRECTIONS
On the basis of previous studies, several future directions should be
further considered. Firstly, due to lack of consistency for the definitions of
parent communication behaviors, studies are needed to clarify these verbal
behaviors (i.e., expressions of empathy and reassurance) within future
behavioral coding measures, and then reexamine if and how parent behaviors can
influence child pain, distress and cooperation during invasive procedures.
Secondly, longitudinal study of parent-child interactions during repeated
procedures are still needed using the new methods, such as time-window
sequential analysis. These new methods will potentially provide the causal
relationships among these behavioral variables. Thirdly, different
observational coding systems have been used to quantify parent-child
interacting behaviors during invasive procedures, which might be attributed to
the mixed findings of previous studies. A systematic evaluation of these widely
used parent-child interactions coding systems could potentially explain these
mixed findings. Lastly, although other researchers have studied parent verbal
behaviors, parent nonverbal behaviors are less explored, particularly in the
childhood cancer context. Both verbal and non-verbal behaviors should be
conceptualized as a whole within parent-child interactions in future studies.
In closing, more attention should be paid to the development of theory-based
observational coding systems to assess parent-child interactions, the
longitudinal parent behaviors adjustment during repeated painful procedures, as
well as the influence of these behaviors on children’s short-term and long-term
treatment responses.
CONFLICT OF INTERESTS
The Author has no conflicts of interest to declare.
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Unit, Via Mondino 2 – 27100 Pavia (PV),
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