Changing parental responses to pediatric hematology/oncology pain with a single session, operant-based group intervention
Jennifer M. Allen, Niki Jurbergs, Valerie McLaughling Crabtree, Kathryn Russell, and Jennifer L. Harman
The operant model of pain highlights learning as essential to the development and maintenance of chronic pain; it postulates that pain behaviors (e.g. grimacing, guarding, moaning, rubbing, verbalizing pain) are integral to the problem of pain, and that these behaviors are impacted by environmental contingencies (Gatzounis et al., 2012). Indeed, a parent’s solicitous, or concerned and inquiring, behavior to a child’s demonstration of pain is associated with increased sick role behavior in children with chronic or recurrent pain (Walker & Zeman, 1992); and, protective or critical parental responses to pain can result in increased child impairment or somatic symptoms (Claar et al., 2008). The relationship of family factors and the child’s pain experience is transactional. Families that have a child who experiences chronic pain report more disruptions in their life (i.e. less cohesion, greater conflict) than families who do not; Palermo & Eccleston, 2009; Lewandowski et al., 2010). Similarly, during hospitalization, pain is often described as extremely stressful for parents (Forgeron et al., 2006); and, parental responding and parental experience of their child’s somatic symptoms can impact a child’s pain experience (Flor et al., 1987; Flor et al., 2002; Hechler et al., 2011; Levy et al., 2010; Levy et al., 2013; van Tilburg et al., 2015). These findings highlight the importance of including parents in interventions targeting pain.
Research has demonstrated that inclusion of parents in pain interventions is not only beneficial but also feasible and acceptable. A one-day workshop focusing on educating adolescents with chronic pain and their parents resulted in significant gains in parenting practices, parental beliefs about adolescents’ ability to manage pain, and knowledge; these findings were maintained at the 3-month posttreatment follow-up (Coakley et al., 2018). Similarly, a randomized controlled trial evaluated the effectiveness of teaching children and parents cognitive behavioral strategies to manage functional abdominal pain, and taught parents social learning strategies to reduce solicitous responses to illness behavior (Levy et al., 2010; Levy et al., 2013). At six (Levy et al., 2010) and 12-month (Levy et al., 2013) follow-ups, parents who received those interventions reported reductions in their children’s pain, parental solicitous responses, and perceived threat of their children’s pain.
Intervening with parents to improve the child’s pain experience: a pilot clinical program
Given the impact that parents can have on their children’s pain experiences, single-session, one-hour parent groups (n = 5) based on the operant model of pain were offered as a clinical adjuvant to individual therapy for pediatric hematology/oncology patients with pain. Group content was created based upon clinical experiences and previous literature (e.g. Walker & Zeman, 1992; Flor et al., 2002; Claar et al., 2008; Gatzounis et al., 2012). Goals of the group were to provide psychoeducation regarding pain, to strengthen parenting strategies to manage their children’s pain, and to offer a supportive environment that afforded parents an opportunity to learn from each other.
The group intervention provided education related to the role of learning in the maintenance of persistent/chronic pain. Discussion and handouts helped to convey important constructs; for example, parents received a handout that defined pain, pain behaviors, and well behaviors, explained how pain behaviors may be inadvertently reinforced, and provided tips for decreasing pain behaviors and increasing well behaviors. (See Appendix for excerpts. On request, handouts available from the author.)
Group discussions focused on the application of planned ignoring of pain behaviors and reinforcement of well behaviors. Parents learned the importance of privately noticing a child’s pain without inadvertently reinforcing pain behaviors; empathic support was provided to acknowledge that this may be difficult for parents of hematology/oncology patients given that pain historically served as an indicator that something was wrong. Anecdotally speaking, the operant model of pain appeared more readily accepted by group members on occasions where at least one parent in the group described a time when their child demonstrated pain behaviors prior to engaging in an unwanted activity (e.g. attending school, going to an ancillary appointment the patient did not particularly enjoy). This allowed parents to identify real-life connections between pain and avoidance behaviors which contributed to more rich discussion of how parents can respond to their child during these times.
Evidence of group effectiveness
Following approval from the Institutional Review Board, demographic and questionnaire data were abstracted from medical records. Given the small sample size the Wilcoxon Signed-rank test was used to compare median scores on standardized measures.
Parents (N =10) had children (ages 9 to 17; M = 13.7 ± 2.5 years) who previously attended individual psychotherapy. Sixty percent of patients were female. The majority of patients experienced pain related to a malignant solid tumor (n = 6, 60%). Other primary medical diagnoses included acute lymphoblastic leukemia (n = 2, 20%), sickle cell anemia (n = 1, 10%), and factor VIII deficiency (n = 1, 10%). All patients experienced disease and/or treatment related pain. Unfortunately, data regarding how actively parents participated in other pain interventions previously or concurrently were not collected. Groups (n = 3) varied in size, with two to four mothers per group.
Mothers completed a measure of their responses to their child’s pain (adapted from Adult Responses to Children’s Symptoms; ARCS, Van Slyke & Walker, 2006) prior to group attendance. On this measure, higher scores are indicative of more solicitous responses to pain behaviors. Mothers also completed a measure of treatment acceptability adapted from the Treatment Evaluation Inventory, Short Form; (TEI-SF; Kelley et al., 1989) after participation. These mothers were then contacted by phone 6-18 months (M = 14.9 ± 4.9 months) subsequent to group participation. At that time, mothers who attended a group completed another ARCS via telephone. The median ARCS response to a child's pain prior to group participation significantly decreased, as was desired (W = 1, Z = -2.55, p = .011, r = 0.81).
All mothers found the group acceptable (n = 10, 100%) and enjoyable (n = 10, 100%); and, most mothers (n = 9, 90%) believed operant strategies were likely to be effective in decreasing their child’s pain. Mothers commented that they liked “the open format,” “learning strategies that work,” “being able to discuss with other parents who understand,” and “discussion to pinpoint (application to) personal circumstances.”
Mothers who attended a one-hour, single-session psychoeducational group based on the operant model of pain found the group acceptable and enjoyable. As a group, mothers reported significant improvements in appropriate responses to pain behaviors that were maintained following group participation. Yet, information regarding prior parental involvement in pain intervention(s) remains unknown. The impact of participation in this group may have been moderated by parents’ prior involvement in other intervention(s), particularly if parents previously received similar information. These are important factors for future research to explore. Nonetheless, these results and results of previous research suggest that parent groups are likely a beneficial adjuvant to pain interventions for pediatric hematology/oncology patients. Future research should consider a more rigorous, intentional research design and inclusion of child self-report of pain.
Cite as: Allen JM, Jurbergs N, McLaughlin Crabtree V, Russell K, Harman JL. Changing parental responses to pediatric hematology/oncology pain with a single session, operant-based group intervention. Pediatric Pain Letter 2018;20(3):33-37. www.childpain.org/ppl
Claar RL, Simons LE, Logan DE. Parental response to children's pain: the moderating impact of children’s emotional distress on symptoms and disability. Pain 2008;138:172-179. PubMed Abstract
Coakley R, Wihak T, Kossowsky J, Iversen C, Donado. The Comfort Ability Pain Management Workshop: a preliminary, nonrandomized investigation of a brief, cognitive, biobehavioral, and parent training intervention for pediatric chronic pain. J Pediatr Psychol 2018;43:252-265. PubMed Abstract
Flor H, Kerns RD, Turk DC. The role of spouse reinforcement, perceived pain, and activity levels of chronic pain patients. J Psychosom Res 1987;31:251-259. PubMed Abstract
Flor H, Knost B, Birbaumer N. The role of operant conditioning in chronic pain: an experimental investigation. Pain 2002;95:111-118. PubMed Abstract
Forgeron PA, Finley GA, Arnaout M. Pediatric pain prevalence and parents’ attitudes at a cancer hospital in Jordan. J Pain Symptom Manage 2006;31:440-448. PubMed Abstract
Gatzounis R, Schrooten MG, Crombez G, Vlaeyen JW. Operant learning theory in pain and chronic pain rehabilitation. Curr Pain Headache Rep 2012;16:117-126. PubMed Abstract
Hechler T, Vervoort T, Hamann M, Tietze AL, Vocks S, Goubert L, et al. Parental catastrophizing about their child's chronic pain: are mothers and fathers different? Eur J Pain 2011;15:515.e1-515.e9. PubMed Abstract
Kelley ML, Heffer RW, Gresham FM, Elliott SN. Development of a modified Treatment Evaluation Inventory. J Psychopathol Behav Assess 1989;11:235-247.
Levy RL, Langer SL, Walker LS, Romano JM, Christie DL, Youssef N, et al. Cognitive-behavioral therapy for children with functional abdominal pain and their parents decreases pain and other symptoms. Am J Gastroenterol 2010;105:946-956. PubMed Abstract
Levy RL, Langer SL, Walker LS, Romano JM, Christie DL, Youssef N, et al. Twelve-month follow-up of cognitive behavioral therapy for children with functional abdominal pain. JAMA Pediatr 2013;167:178-184. PubMed Abstract
Lewandowski AS, Palermo TM, Stinson J, Handley S, Chambers CT. Systematic review of family functioning in families of children and adolescents with chronic pain. J Pain 2010;11:1027-1038. PubMed Abstract
Palermo TM, Eccleston C. Parents of children and adolescents with chronic pain. Pain 2009;146:15-17.
van Tilburg MA, Levy RL, Walker LS, Von Korff M, Feld LD, Garner M, et al. Psychosocial mechanisms for the transmission of somatic symptoms from parents to children. World J Gastroenterol 2015;21:5532-5541. PubMed Abstract
Van Slyke DA, Walker LS. Mothers’ responses to children’s pain. Clin J Pain 2006;22:387-391. PubMed Abstract
Walker LS, Zeman JL. Parental response to child illness behavior. J Pediatr Psychol 1992;17:49-71. PubMed Abstract