Journal of Pediatric Psychology, Vol. 25, No. 2, 2000, pp. 117-121
© 2000 Society of Pediatric Psychology
Brief Clinical Report: Procedural Pain and Anxiety Management With Mother and Sibling as Co-therapists
The Hospital for Sick Children and The University of Toronto
All correspondence should be sent to Maru Barrera, Department of Psychology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada. E-mail: barrera{at}sickkids.on.ca .
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Abstract |
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Objective: To describe a multidimensional family-focused intervention for pain and anxiety management during port-access with a Spanish-speaking preschool child being treated for acute lymphoblastic leukemia, using the patient's mother and one sibling as co-therapists.
Methods: Assessment procedures included interviews with mother, sibling, and primary nurse and behavioral observations during port-access, and during a medical examination. Intervention consisted of two training and two "in-vivo" sessions, using behavioral and cognitive behavioral techniques.
Results: Physical resistance was eliminated and anxiety responses reduced during port-access sessions. Maternal anxiety and sibling distress were also reduced.
Conclusions: This case study illustrates an empirically supported child and family focused in the clinical care context and highlights cultural factors that may influence the success of such interventions.
Key words: procedural pain; anxiety; psychological intervention; pediatric cancer.
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Introduction |
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Over the last 20 years, significant advances in the treatment of pediatric acute lymphoblastic leukemia (ALL) have resulted in a dramatic improvement in long-term survival. However, children diagnosed with All must undergo lengthy treatment involving many invasive procedures, some painful or anxiety provoking. This article describes a multidimensional, empirically supported psychological intervention for a Spanish-speaking preschool child undergoing port-access for ALL treament. Portaccess is a procedure commonly used in current pediatric cancer treatment to facilitate intravenous access and to minimize pain. However, its psychological impact has not been previously reported. This study exemplifies the unique role of a sibling and the mother in the use of empirically supported behavioral and cognitive behavior techniques within a clinical setting, and it identifies cultural and linguistic factors relevant to the intervention.
Psychological interventions have been proven to be effective in reducing
pain responses and anxiety in children who require intravenous access for
cancer treatment (e.g., Kuttner, Bowman,
& Teasdale, 1988
; Powers,
Blount, Bachanas, Cotter, & Swan, 1993), but they have not
been implemented during port-access. The majority of children undergoing
painful procedures, however, do not engage in effective coping strategies
unless prompted to do so by an adult
(Blount, Landolf-Fritsche, Powers, &
Sturges, 1991). The use of a parent as co-therapist for pain and
distress reduction during painful procedures has been suggested (e.g.,
Blount, et al., 1991), but
results are mixed (Powers et al.,
1993). Parental anxiety may contribute to the child's anxiety and
may interfere with the child's ability to cope
(Dahlquist, Powers, Cox, & Fernbach,
1994). In addition, a reduction in parental anxiety alone may not
result in a corresponding reduction of children's distress during painful
procedures (Jay, Elliot, Katz, &
Siegel, 1987).
Cultural factors, such as traditions and language, may be important in the
success of psychological interventions in medical settings. Immigrants display
a sense of community toward groups or individuals that are
"proximate" (work in the same place, speak the same language),
resulting in feelings of "psychological closeness"
(Regis, 1988). Hispanic
families seek and accept psychological help from individuals they perceive to
be connected with them such as relatives, friends, and key community members,
such as priests, rather than from health professionals
(Padilla, Cervantes, Maldonado, &
Garcia, 1988). In the case described here, Spanish was used
throughout the intervention for two reasons: (1) it was assumed that its use
would enhance the sense of closeness between the therapist and the family, and
(2) Spanish was the language spoken at home and the mother expressed
preference for its use.
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Case Report |
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Assessment
History of the Problem
JC was referred for psychological intervention near the end of a 3-year chemotherapy protocol for ALL, at age 4 years, because of severely disruptive behavior during port-access. Port-access required physical restraint by two nurses and his mother. His behavior had become progressively worse and unmanageable in the 3 months prior to the referral. Lumbar punctures and bone marrow aspirations were done under deep sedation or general anesthesia and thus did not present problems for JC. During the induction phase of treatment, JC was hospitalized for approximately 4 weeks and required many blood products and several periods of isolation because of infections. Reportedly, JC became clingy with his mother, fearful and difficult to console, and stopped walking and talking. When JC went home, his parents did not allow him to play with other children, even his own siblings, for fear of infections. Most of JC's subsequent treatment was as an outpatient. Medically speaking, JC's health became stable during the maintenance phase of his treatment. He is described in his medical chart as "growing by leaps and bounds."
Observations During Port-Access
During the port-access observation, JC sat on his mother's lap while two
nurses restrained him. JC's behavior throughout the procedure included
kicking, fighting, scratching, biting, and spitting. JC's mother tried to
reassure him and she appeared to be distressed herself. The staff seemed to be
tense and guarded and expressed fear of being hit by him. The procedure lasted
approximately 20 minutes, about double the usual time required for a calmer
child. According to the staff, JC's behavior during this observation was
typical of how he had behaved in previous access-to-port sessions for the last
three months. Using a visual analog scale with ratings from 1 to 10 (10 being
the worst pain), both Mrs. C and the primary nurse rated JC's pain response as
10 during the access-to-port procedure.
Observations During the Physical Examination and in the Playroom
During outpatient clinic visits, JC became highly anxious and fearful. He
appeared tense and agitated, he shifted his eyes repeatedly, and he was unable
to focus on any play activity. After a while, JC played quietly on his own but
in close proximity to his mother. He continued to be apprehensive. During the
physical examination, JC resisted initially but the physician managed to
partially engage him. While JC's mother spoke with the physician, the
therapist began to establish social contact with JC. He approached the toy
offered after some hesitation. JC established eye contact momentarily but
allowed the therapist to sit close to him. Because he appeared to be very
tense, the therapist began to rub his back gently. JC responded by moving
closer to the therapist and leaning toward her as he drew and scribbled on a
magnetic board. He did not speak to anyone during the observation.
Cultural and Family Background
JC comes from a traditional Hispanic family from Central America who
arrived in Canada 4 years prior to his diagnosis. JC is the youngest of 4
children: three boys (4, 9, and 12 years old) and a girl (14 years old). Mrs.
C has a postsecondary education and speaks fluent English. Mr. C. has a grade
six education and speaks English poorly. Prior to JC's diagnosis, Mrs. C was
the primary caregiver and worked full-time as an assistant manager at a bank.
Mr. C had difficulties finding stable employment as a laborer. The family
religion, Jehovah's Witnesses, placed additional pressure in decision making
regarding the utilization of blood products for JC's treatment but also
provided community support. Financial difficulties emerged when Mrs. C left
her full-time job to care for JC. Mrs. C was the parent who stayed with JC
during hospitalizations and brought him for outpatient treatment. The parents
expected JC's siblings to understand and accept the preferential treatment of
JC. For example, siblings were expected to allow JC to use their personal
belongings without asking. According to Mrs. C, the 9-year-old sibling, LC,
had begun to show some emotional and behavioral difficulties and she requested
help for him.
Emotional Problems With the 9-Year-Old Sibling
Mrs. C described LC as a bright and sensitive child. He cried frequently
and became irritable and argumentative at the slightest provocation. He was
outspoken with his parents, a behavior highly unacceptable within the Hispanic
culture, and had developed concentration difficulties at school. During the
interview, he demonstrated little knowledge of JC's illness and treatment but
expressed interest in learning more about it. He reported not having anyone to
talk to or to turn to for support, except for his mother who was usually busy
caring for JC. He expressed resentment toward his parents for the preferential
treatment JC was receiving and missed being able to play with JC. Although the
emotional problems LC displayed were not the focus of the present
intervention, they were addressed indirectly by including him in the
intervention with JC and directly by providing him with information about JC's
disease and treatment. The decision to involve LC in JC's care was based on
reports of improved communication in the family when siblings play an active
role in the care of the ill child (Kramer
& Moore, 1983).
Maternal Distress
Mrs. C expressed feeling frustrated and embarrassed by JC's behavior, a
lack of confidence in her parenting skills, and guilt about the predicament of
her healthy children. Mrs. C explained that she had not discussed her personal
issues with the staff before because she felt more comfortable addressing such
issues in Spanish. JC's mother was described in the medical chart as
"very anxious" on several occasions. In addition, the family was
described as being "resistant to assistance." Mrs. C indicated
that her husband was not willing to be part of this intervention. The decision
to actively involve Mrs. C in the intervention was based on previous
suggestions that reduction of maternal anxiety during the child's painful
procedure may be beneficial to both the child and the parent
(Kazak, Penati, Waibel, and Blackall,
1996).
In summary, during the assessment, JC presented a high level of anxiety associated with clinic visits and learned disruptive behaviors associated with port-access procedures for his chemotherapy treatment. Mrs. C was experiencing a high level of anxiety, and LC was showing signs of emotional maladjustment.
Intervention
The behavioral and cognitive-behavior techniques used in this case were
similar to those used in previous studies with young children undergoing
treatment procedures (e.g., Jay et al.,
1987; Kutter et al.,
1988). Three main goals were set for the intervention: (1) to
reduce JC's anxiety and disruptive behavior associated with access-to-port
procedures; (2) to reduce Mrs. C's anxiety while enhancing confidence in her
parenting skills; and (3) to reduce LC's distress. Relaxation, induced by
rubbing JC's back and encouraging play, was used to reduce JC's anxiety during
clinic visits. During port-access, "bubble making" was selected to
redirect his attention because it was JC's favorite activity. The intervention
consisted of two training sessions: in session one, JC's mother and JC were
present; in session two, LC was seen alone first, and the mother and JC joined
in later. These sessions were scheduled prior to the next required
port-access. Praise and verbal encouragement were used throughout training to
help build self-confidence in Mrs. C and LC. During the first session,
maternal training included learning to identify specific behaviors such as
listening and following directions, learning to use reinforcement for
appropriate behavior, learning to induce JC's relaxation, using distraction
techniques with JC (active breathing by blowing bubbles), and learning how to
coach him. To reduce maternal anxiety, deep breathing paired with muscle
relaxation, self-direction, and reframing of stressful events were used. The
second session focused on the training of the sibling. The steps that were
used to train Mrs. C were repeated to train LC. In addition, LC was provided
with information about ALL treatment. For example, the treatment protocol and
its side effects were explained to him.
For the first "in vivo" port-access session, the therapist, Mrs. C, and JC met 20 minutes prior to its onset to induce relaxation and to role-play the procedure. Mrs. C was asked to hold JC on her lap as before and to follow the strategies learned during the training sessions. The therapist held the bottle of "bubble" soap while JC held the bubble stick and blew bubbles. When it was time to go to the treatment room, JC became somewhat apprehensive but his mother remained reassuring, relaxed, and confident. She explained to JC that they will make bubbles in the treatment room as the nurse "got the chemo done." The nurse, noticing the difference in Mrs. C's and JC's attitude, made a positive remark and remained reassuring throughout the session. JC did not kick, scratch, or scream during the procedure. Except for two instances during which JC looked at his mother for reassurance, JC kept his attention on the bubble making. The entire procedure lasted 6 minutes. The response of the other nurses in the clinic was very positive toward JC and his mother. Both mother and son left the clinic smiling.
For the second port-access session, the therapist met JC, Mrs. C, and LC 30 minutes prior to the procedure for preparation. During the procedure, the mother held JC on her lap while the sibling held the soap bottle and talked to JC "coaching him" to make bubbles, and the therapist observed. The procedure went as smoothly as it did during the previous session. JC responded with a smile to the comments of approval from the staff. He seemed calm and happy. Both Mrs. C and LC appeared to be very proud of themselves and of JC.
Follow-up contacts, 1 and 2 months after termination of the intervention, were made by phone with Mrs. C to find out how all three family members were doing. Mrs. C reported that she and LC were talking more with one another. Moreover, Mrs. C said that LC was "more cooperative" at home and less irritable. She expressed that she felt more in control of her parenting skills at home and at the clinic. She reported feeling particularly pleased during her visits to the clinic because JC was no longer a "behavior problem" during port-access. LC assisted during port-access twice, after which Mrs. C brought JC alone. JC continued to blow bubbles through the procedure with his mother's assistance and reportedly did not have any more difficulties with port-access through to the termination of his treatment (3 months after the psychological intervention). A report from JC's primary nurse confirmed maternal reports of his behavior.
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Discussion |
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This article describes a multidimensional intervention that included the elimination of disruptive behavior and a reduction of anxiety during portaccess with a Spanish-speaking 4-year-old boy undergoing treatment for ALL. Previous studies have suggested that distress during invasive procedures does not typically decrease over time (e.g., Katz, Kellerman, & Siegel, 1980
), and may actually increase. In this study, JC's distress had
increased over time to a level difficult to manage by staff and the mother
without psychological intervention.
This case intervention was unique in several ways. First, although
psychological techniques have been previously reported to be effective in
reducing pain response during venipunctures, lumbar punctures, and bone marrow
aspirations, these techniques, however, have not been used before during
port-access. This omission might be due to an assumption that this procedure
is neither distressing or painful for young children. As this report
illustrates, this may not be the case. Second, the mother and one of the
siblings became co-therapists for JC, and their involvement may have had
additional therapeutic benefits for them, such as increasing their repertoire
of skills to help JC cope with the cancer treatment, reducing their own
anxiety, increasing their self-confidence, and improving communication in the
family. The suggestion that pediatric cancer affects the family as a unit as
well as each of its members (e.g., Kazak et
al., 1996) is supported in this report, as is the effectiveness of
family-centered intervention. Finally, this case illustrates how cultural
factors may contribute to the success of these interventions.
The use of the family's native language throughout the intervention may
have facilitated the development of psychological closeness
(Regis, 1988) and trust in the
therapist, which in turn may have increased the likelihood of success. The
development of trust in health professionals may require a culturally
sensitive approach tailored to the unique needs of the child and his or her
family. The limited openness that this family demonstrated with the health
care team before the psychological intervention may have served to preserve
normalcy, dignity, and identity within the cultural group
(Thorne, 1985). However,
communication was limited even within their own family, as demonstrated by the
sibling's lack of knowledge of ALL and its treatment. "Protecting"
the sibling from factual information about ALL and its treatment led to
symptoms of anxiety similar to those of children who were uninformed of their
parents' terminal illness. Uninformed children were found to be more anxious
than children who were kept informed
(Rosenheim & Reicher,
1985).
In conclusion, this article describes a unique multidimensional
family-focused intervention for procedural pain and anxiety management during
port-access for a child being treated for ALL. The intervention illustrates
the extent of the impact of the disease and its treatment on the family as a
unit and supports the importance of family-centered care. The successful use
of the mother and a sibling as co-therapists, after their own anxiety and
needs for information were addressed, supports the notion that greater
utilization of family personal resources is possible in psychological
interventions planned for the ill child. Finally, this case highlights the
need to develop culturally sensitive interventions and illustrates the role of
sociocultural factors, such as language and cultural beliefs, in the success
of psychological intervention.
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Acknowledgments |
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I thank Julie Gibson for her assistance in preparing this article; Joanna Chung, Norma D'Agastino, and Dr. Katherine Wolkow for their comments on earlier versions of this article; and an anonymous reviewer for excellent constructive comments.
Received July 23, 1998; revision received January 4, 1999; revision received April 16, 1999; accepted April 25, 1999
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References |
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Blount, R. L., Landolf-Fritsche, B., Powers, S. W., & Sturges, J. W. (1991). Differences between high and low coping children and between parent and staff behaviors during painful medical procedures. Journal of Pediatric Psychology, 16, 795-809.
Dahlquist, L. M., Powers, T. G., Cox, C. N., & Fernbach, D. J. (1994). Parenting and child distress during cancer procedures: Children's Health Care, 23, 149-166.
Jay, S. M., Elliott, C. H., Katz, E., & Siegel, S. E. (1987). Cognitive-behavioral and pharmacological interventions for children's distress during painful medical procedures. Journal of Consulting and Clinical Psychology, 55, 860-865.[ISI][Medline]
Katz, E. R., Kellerman, J., & Siegel, S. E. (1980). Behavioral distress in children with cancer undergoing medical procedures: Journal of Consulting and Clinical Psychology, 48, 356-365.[ISI][Medline]
Kazak, A. E., Penati, B., Waibel, M. K., & Blackall, G. F.
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