Reframe the Pain: A Parent-Led Intervention to Alter Children's Memories for Pain
Condition: Psychology; Pain; Stress; Behavior; Coping; Emotion, Expressed
Study type: Interventional

Summary: 
      Pain is a common experience in youth and influences youth long after the painful situations
      are over. Youth memory of pain after surgery can affect painful experiences in the future.
      Negative memories and feelings of pain, like remembering more pain than the actual level of
      pain experienced are linked to anxiety for future surgery. Research has found that children's
      memories of pain is linked to anxiety, pain-related fear, and confidence. Children's memories
      for pain can be altered after a visit to the hospital, but only a couple of studies have look
      at this.

      The study will be one of the first to look at how well a parent-led memory reframing
      intervention to reduce youth's negative memories of surgery. We want to look at how a
      parent-led memory reframing session on youth's post-surgical pain memory.

      The study will include 90 youth who have a chest wall surgery or a spinal fusion surgery at
      the Alberta Children's Hospital. They will be recruited at the Alberta Children's Hospital.
      There will be pain tests in the form of surveys 1-3 weeks before surgery, pain monitoring in
      the hospital for a couple of days, pain monitoring 1-2 weeks after surgery, a clinic visit
      2-4 weeks after surgery for a memory reframing session, and pain monitoring 6 weeks after
      surgery in the form of a telephone interview.
    

Detailed description: 
      Background:

      Children's pain memories are a powerful mechanism underlying subsequent pain experiences.
      Pain is ubiquitous in childhood. Healthy children who are compliant with medical care undergo
      up to 20 painful procedures by the age of 5. Moreover, millions of children undergo surgery
      (e.g., tonsillectomies) each year, which is commonly linked to pain and distress. Pain from,
      and fear of, medical experiences are neither short lasting or benign. Poorly managed pain can
      result in negatively biased pain memories, fears, and for some children, phobias that persist
      into adulthood. We have demonstrated that children's pain memories are a more important
      predictor of subsequent pain than their initial experience of pain itself. Indeed, children's
      pain memories fully mediated the relation between an initial and a subsequent laboratory pain
      experience. Our most recent data indicates that children's pain memories 2 months after
      surgery predict higher levels of post-surgical pain 4-6 months later.

      Child and parent factors predict children's pain memory development. Existing research has
      implicated a number of factors in the development of negatively biased memories in children.
      Child sleep and language abilities have been shown to influence memory development following
      stressful and painful events. Children who are more anxious and who experience greater pain
      are more likely to develop negatively biased pain memories, which then leads to greater fear
      and pain at subsequent pain experiences. Parents and adolescents who think in more
      catastrophic ways about child pain prior to surgery tend to develop more negatively biased
      pain memories months later. Parent and child anxiety are thought to lead to memory biases
      because of the ways in which parents and children talk about pain following painful events.
      However, the influence of parent-child language-based interactions on pain memories has not
      been demonstrated.

      The influence of parents on children's pain memories is greatest in early childhood. To guide
      future research on children's pain memory development, I published a conceptual developmental
      framework in the journal PAIN11 outlining the cognitive and social factors that are thought
      to influence children's pain memory development. Of particular importance is early childhood
      (ages 4-7 years) when children are most susceptible to memory biases due to suggestibility
      effects. It is also during this time that parents are most influential in shaping children's
      cognitions, emotions, and behaviors. Our model posits that the socio-linguistic context (e.g.
      parent-child narratives about pain) in which pain memories develop is most important in early
      childhood and sets the stage for future pain experiences.

      Parent-child reminiscing influences children's memory development. Although surprisingly
      understudied in the field of pediatric pain, parent-child language-based interactions about
      past negative events, play a powerful role in how autobiographical memories of those events
      are subsequently retrieved and reframed. Parent-child narrative style also influences
      children's coping and psychological functioning. Young children whose parents are
      topic-extending and elaborative (e.g., who ask open-ended questions to pull for richer, more
      detailed accounts of the past) and who use emotional language, have children who are more
      accurate and detailed in recalling their pasts, which is adaptive. Similarly, our recent data
      provides strong evidence that parents who reminisce with their children about a recent
      surgery using a particular style (i.e., more elaborative, less topic-switching) and content
      (less content about pain, fear, medical procedures; more explanations) have children who
      later remember pain a more accurate/positively biased way.

      Memory reframing interventions lead to children remembering pain in more
      accurate/positively-biased ways. To date, there have been three trials of memory reframing
      interventions, all of which were administered by a researcher to children undergoing needle
      procedures (vaccine injections, dental anesthetic injections, lumbar punctures) within 15
      minutes. Our recent systematic review revealed that these interventions were efficacious in
      altering children's memories of pain to be more accurate/positively biased. Emphasizing and
      rehearsing positive aspects of a pain memory have also been shown to lead to an enhanced
      ability of children to forget its negative aspects. However, research has not yet implemented
      parent-led memory reframing interventions for children's pain; however, we have argued that
      parents are potentially the most powerful and accessible agents of change. Indeed, our recent
      data provides strong evidence that the language parents use when reminiscing with children
      following tonsillectomies influences children's pain memory biases.

      Recent data from our lab provides compelling evidence that parents who reminisce with their
      children about surgery using a particular style (e.g., more elaborative, less
      topic-switching) and content (e.g., less content about pain, fear, medical procedures; more
      explanations) have children who later remember post-surgical pain a more accurate and
      positively biased way. Parental reminiscing style and content have been effectively targeted
      in interventions to improve children's memory development, albeit, not yet in the context of
      pain.To date, research has not examined if memory reframing techniques implemented by parents
      can alter children's recall of post-surgical pain. Thus, the goal of this research is to
      conduct a pilot study to examine the preliminary efficacy, feasibility, and acceptability of
      a brief parent-led memory reframing intervention following pediatric surgery to foster more
      adaptive (i.e., less negatively biased) pain memories. The intervention will draw from our
      recent data and extant memory reframing and narrative-based intervention techniques to
      promote more accurate/positive pain memories by teaching parents more adaptive styles of
      reminiscing with their children about a past surgery. We will accomplish our aims by
      extending our existing program of research on post-surgical pain memory development of
      children (aged 4-7 years) and randomly assigning parents to receive a memory reframing
      intervention or attention control following surgery and subsequently assessing children's
      memories for pain.

      Study aims and hypotheses:

      Aim 1.) To examine the preliminary efficacy, feasibility, and acceptability of a parent-led
      memory reframing intervention on children's post-surgical pain memories. Hypothesis 1.)
      Children in the intervention group will go on to recall post-surgical pain in a more accurate
      or positively biased way as compared to the control group who will remember pain in a more
      negatively biased way. The intervention will be judged by parents to be feasible and
      acceptable.

      Aim 2.) To examine the influence of baseline individual child and parent characteristics on
      children's pain memories. Hypothesis 2.) Children who are more anxious, less
      self-efficacious, have worse sleep quality, and whose parents are more anxious and
      catastrophize more about child pain prior to surgery will subsequently remember pain in a
      more negatively biased way.

      This study will be the first to develop and pilot test a brief, parent-led intervention aimed
      at changing the way children recall their pain after surgery, thereby extending
      memory-reframing techniques to the post-surgical pain context. Given the integral role of
      pain memories in shaping future pain experiences and the need for interventions in the
      pediatric surgery context, this study has great potential to contribute an accessible and
      feasible post-surgical pediatric pain management intervention and foster more adaptive pain
      trajectories and medical experiences in childhood.

      Methods:

      Sample:

      Participants will include 90 adolescents scheduled for a pectus repair or spinal fusion,
      surgeries associated with high levels of post-surgical pain,2 and their parents. They will be
      recruited at the Alberta Children's Hospital (ACH). We will use a recruitment strategy that
      is consistent with our studies with clinical samples. Specifically, the recruitment pool will
      be generated as follows: 1) clinic staff will identify the patients scheduled for pectus
      repair or spinal fusion surgeries; 2) upon booking of the pre-op clinic visit, the admin
      staff will obtain permission to contact for research purposes from parents along with contact
      details; 3) clinic staff will pass on the contact information to the research study team via
      a secure electronic transfer; 4) the study staff will contact eligible families and screen
      interested parents and youth for eligibility and address any questions they might have and
      then set up a time to conduct a consent conference call with parent and child. This consent
      call will involve a discussion with the parent and child who will participate in the study
      and a researcher. The researcher will explain the information included in the consent form
      and provide the opportunity for potential participants to ask questions and clarify
      understanding. At this time, we will also clearly outline our limits to confidentiality
      regarding disclosure of abuse, neglect, suicidal ideation and intent, and potential to a
      minor. These are described on the consent form; however, the consent conference is an
      excellent opportunity to reiterate and clarify these procedures and issues. For this consent
      conference, a researcher will email these forms to participants (using REDCap, a secure
      online web-based application) who can complete them on a computer device. To increase
      participation, we will also distribute the posters (see Recruitment Poster) within ACH, so
      that potential participants will have the opportunity to contact us directly to indicate
      interest in the study. Screening for eligibility and consent procedures will be as described
      above.

      Procedure:

      One week before surgery, youth will complete measures of pain, sleep (Adolescent Sleep Wake
      Scale; ASWS), pain catastrophizing (PCS - Child version), anxiety and depression symptoms
      (PROMIS-25), quality of life (PedsQL), PTSD symptoms (CPSS-5), sensitivity to pain
      traumatization (SPTS-Child version), self-efficacy about pain, expectancies about pain and
      pain-related fear (Numerical Rating Scales; NRS). Parents will complete measures of sleep
      (Pittsburgh Sleep Quality Index), pain catastrophizing (PCS-Parent version), measures of
      anxiety, depression and PTSD symptoms (PROMIS-29 and PCL-5), sensitivity to pain
      traumatization (SPTS-Parent version), self-efficacy about pain, parent responses to child
      pain (ARCS), expectancies about pain and pain-related fear (NRS), a socio-demographic survey
      (parent education, child age, household income), preparation that they/their child received
      about the surgery and what this entailed (e.g., coping skills, pain management), and family
      history of surgeries.

      On the day of surgery and every day after the surgery (until discharge), both youth and
      parents will report pain characteristics (pain intensity [NRS], pain-related fear [NRS], pain
      interference [PROMIS], pain unpleasantness [a Likert scale], pain catastrophizing [state]),
      state anxiety (NRS), overall affect (NRS), and sleep quality (NRS). Parents will also
      complete a measure of parent responses to child pain (ARCS). Information regarding analgesic
      and anesthetic agents administered on the day of surgery will be collected via medical chart
      review.

      At 2-weeks post-surgery, parents and youth will complete the baseline assessment measures.

      At 4-weeks post-surgery following their clinic visit, parent-child dyads will be randomized
      into three groups: an attention control group, a normal reminiscing group, and an
      intervention group. Randomization will be conducted by an external statistician using a
      computer random number generator. Allocation concealment will be achieved using sequentially
      numbered, opaque, and sealed envelopes. Group allocation will be revealed by a researcher at
      the outset of the lab visit.

      Attention Control Group: Parents and youth in the attention control group will watch a
      neutral 20-minute video that is not related to surgery (Planet Earth). Importantly, they will
      not talk about pain or the past surgery experience.

      Normal Reminiscing: Parents and youth in the normal reminiscing group will be instructed to
      reminisce with their children about the in-hospital and post-surgery periods as they normally
      would.

      Intervention Group: Parents and youth in the intervention group will receive instructions
      about adaptive ways of reminiscing about the in-hospital and post-surgery periods. The
      intervention will draw from existing narrative-based interventions that have taught parents
      to reminisce with their children about past negative events in more elaborative and
      emotion-rich ways (e.g., using more open-ended questions, to follow in on children's answers
      by providing new details about the event, to talk more about emotions, and to praise
      children's answers). We will also include elements of past pain memory reframing
      interventions and findings from our recent data. Specifically, parents will be taught to
      reminisce with their children about the in-hospital and post-surgery periods by providing
      more explanations for events, using less utterances about pain, fear, and medical procedures,
      emphasizing positive aspects of the child's surgery memory (e.g., when children used coping
      methods such as deep breathing, when they got a treat), and enhancing children's
      self-efficacy regarding their ability to cope with pain. Researchers will also provide
      suggestions for specific questions and remarks to make while reminiscing. Parents, youth, and
      researchers will engage in brief role-plays to solidify the techniques, which will be
      followed by researcher feedback. After this training period, parents in the intervention
      group will be instructed to reminisce with their children about the in-hospital and
      post-surgery periods using the intervention strategies.

      At 6-weeks post-surgery, youth and parent will complete a telephone pain memory interview to
      assess youth's recall of the in-hospital and post-surgery periods.Then, parents in the
      intervention group will complete a brief semi-structured telephone interview to assess
      feasibility and acceptability of the intervention.
    

Intervention name(s): Pain Reframing Intervention; Attention Control Group
Intervention type(s): Behavioral; Behavioral
Intervention description(s): Parents and youth in the intervention group will receive instructions about adaptive ways of reminiscing about the in-hospital and post-surgery periods. The intervention will draw from existing narrative-based interventions that have taught parents to reminisce with their children about past negative events in more elaborative and emotion-rich ways (e.g., using more open-ended questions, to follow in on children's answers by providing new details about the event, to talk more about emotions, and to praise children's answers).; Parents and youth in the attention control group will watch a neutral 20-minute video that is not related to surgery (Planet Earth). Importantly, they will not talk about pain or the past surgery experience.
Allocation: Randomized
Intervention model: Parallel Assignment
Intervention model description: Participants will include 90 youth scheduled for a pectus repair or a spinal fusion surgery, surgeries associated with high levels of post-surgical pain, and their parents. They will be recruited at the Alberta Children's Hospital. The timelines and measures to be administered to parents and children are listed below. The timelines will include a baseline assessment (1-3 weeks pre-op), in hospital assessment for several days, 1-2 weeks post-op (acute recovery phase), the 2-4 week post-op clinic visit (memory reframing intervention) and 6 weeks post-op.
Participants will be randomized into three groups:
Attention Control Group
Normal Reminiscing
Intervention Group
Masking: None (Open Label)
Primary purpose: Treatment