Including Parents in the Treatment Of Pediatric Complex Regional Pain Syndrome

Shayleigh K. Dickson, MSN, APN, CPNPAC, CPN


Pediatr Nurs. 2017;43(1):16-21. 

In This Article

The Parent-child Dyad

Parents are influential in the lives of their children. Likewise, children have an impact on the lives of their parents. This dynamic relationship that undergoes temporal changes as the child progresses through the stages of development is referred to as the parent-child dyad. To best understand the parent-child dyad in the context of CRPS, it is helpful to discuss the psychological profiles of patients and their parents, characteristics of the parent-child relationship, and how the dyad must be adapted to facilitate a reduction in pain.

It is important to note that parental relationships are not the only familial influences on the child's chronic pain. Palermo and Chambers (2005) proposed an integrative model of parent and family factors in chronic pain. In this model, parenting style influences the parent-child dyad. The global family environment influences both the parent-child dyad and the parenting style. Pain, its mediating factors (i.e., child's gender, age, coping skills), and resultant disability have a reciprocal relationship with the dyad, parenting styles, and global family environment. Thus, complex bidirectional relationships exist between the child's chronic pain, parents, and the broad family. Clinicians must also consider the global family whenever intervening with a parentchild dyad.

Psychological Profiles of Adolescents and Parents

Adolescents with pain and their parents often have clinically significant anxiety, depressive symptoms, and parental role stress; however, it is unclear if these characteristics are present before the diagnosis or develop in response to the chronicity of the pain (Eccleston, Crombez, Scotford, Clinch, & Connell, 2004; Logan et al., 2013; Palermo et al., 2014; Wojtowicz & Banez, 2015). Psychological distress as a causative factor of CRPS is unfounded; however, the view that CRPS is a psychosomatic illness is not uncommon. Patients may experience significant delays in diagnosis when their pain is discounted as being psychosomatic. The process of searching for a diagnosis and feeling that the pain is not being taken seriously may contribute to the psychological distress experienced by both adolescents and parents (Logan et al., 2013).

One study compared adolescents with CRPS to adolescents with other chronic pain (i.e., abdominal, lower back, and headaches) to determine if adolescents with CRPS have higher levels of pain, more functional disability, and more psychological distress than peers with pain (Logan et al., 2013). Patients with CRPS reported higher levels of pain at rest than all other pain groups. Additionally, they had significantly greater functional disability and reports of somatic symptoms than patients with headaches or back pain. When examining symptoms of anxiety and depression, the percentage of patients with CRPS who were at risk or had clinically significant symptoms was comparable to a normative sample. Further, there were no significant differences between pain groups with regard to symptoms of anxiety or depression, which casts doubt on the theory that CRPS is primarily a psychological condition. These findings are significant, however, because they support that CRPS has a psychological component. This study is limited because it used self-report at only one point in time. Both pain and psychological status are dynamic, so a longitudinal study design may be more effective. Additionally, comparing evaluations by a psychiatrist would positively supplement the self-reports.

The Relationship Between the Adolescent and Parent

Characteristics of the relationship between adolescents and parents include enmeshment, developmentally inappropriate care, and maladaptive parenting styles. Sherry and Weisman (1988) published the earliest work examining the parent-child dyad among a group of 21 patients diagnosed with RND and their families. Specifically relating to the dyad, enmeshment (inappropriate closeness and involvement of the child in parental affairs and the parent in child affairs) was present in all 21 families. Enmeshment was most prominent between mother and daughter, and was overtly exhibited in the behavior and language employed by the patient and parent. Subsequent work has continued to identify enmeshment as a prominent feature of the parent-child dyad in this population (Tan et al., 2008; Wilder, 2006). Marital discord is also a common finding among parents of children with CRPS even when the families appear stable and cohesive (Sherry & Weisman, 1988; Wojtowicz & Banez, 2015). Cruz, O'Reilly, Slomine, and Salorio (2011) examined the emotional and neuropsychological profiles of children with type 1 CRPS in an inpatient program and found that 40% reported family problems. In addition to psychological distress, clinicians who work with children with CRPS have found them to be extremely compliant and highly sensitive. Interestingly, while highly sensitive to the needs of others, these adolescents have difficulty expressing their own needs (Sherry & Weisman, 1988). In being highly sensitive, adolescents with CRPS may take on the burdens of marital and family problems to an inappropriate degree. Sherry and Weisman (1988) hypothesized that the chronic pain displaces the stress of the family. That is, adolescents take on the sick role, and in doing so, are given freedom from the extra responsibility they perceive to be their burden.

According to Erikson (1966), adolescence is characterized by the conflict of identity versus role confusion. Significant stress related to increasing independence, establishing identity, and navigating familial and peer relationships is present as the adolescent transitions from childhood to adulthood. Adolescents with chronic pain have difficulty managing these stressors and become caught between striving for developmentally appropriate independence and the comfort of relying on parents (Logan & Meltzer, 2006). Adolescents with chronic pain have difficulty balancing autonomy and parental involvement in their lives (Palermo et al., 2014). At the same time, parents have difficulty balancing the desire to promote their adolescent's independence with the desire to protect the adolescent from the pain-related suffering (Gaughan et al., 2014; Jordan, Eccelston, & Osborn, 2007; Logan & Meltzer, 2006). In a developmental period where peers and non-familial role models should be influential, the adolescent remains most influenced and dependent on parents. In this way, the parent-child dyad that develops when the adolescent has CRPS inhibits progression toward independence and promotes regression to a parenting style much more characteristic of younger children. Parents, while striving to protect their child from harm and provide a nurturing environment, also feel restricted by the pain. Parents may feel that they must always be "on call" to their child's needs, which not only increases anxiety, but also prevents parents from engaging in their own lives and social relationships (Jordan et al., 2007).

In the context of chronic pain, parents can facilitate or impede the child's coping mechanisms. A study conducted among a diverse sample of children and adolescents (aged 8 to 17 years) with chronic pain, including 26.9% with CRPS, examined the moderating impact of the child's emotional distress on the connection between the type of parental response and the child's pain and functional disability (Claar et al., 2008). The study used three parental response types previously identified by Van Slyke and Walker (2006): protectiveness, minimization, and encouraging and monitoring response. First, the study determined that the following three relationships exist between parental response types and the child's functional disability and somatic symptoms: 1) parental protective behavior is positively correlated with both children's functional disability and somatic symptoms, 2) parental minimization is associated with increased somatic symptoms only, and 3) parental encouragement and monitoring are associated with increased functional disability only. Next, the study examined the moderating effect of the child's emotional distress, anxiety, or depression on these relationships. The negative impacts of parental responses on the child's functional disability and somatic symptoms were further exacerbated if the child was anxious and/or depressed.

The parent's perspective is elucidated in two qualitative studies that examined the parent's unique journey from onset of pain through diagnosis and treatment. Gaughan et al. (2014) found that common to the parental journeys were the themes of suffering and disempowerment, which could further be categorized into parent distress and lack of control. With treatment, particularly an inpatient treatment program, the theme of empowerment emerged. Parental distress primarily resulted from the search for treatment. Parents reported increased distress and hopelessness as they struggled to cope with seeing their child in pain and the ineffectual efforts to find a diagnosis. During this time, schisms in parenting occurred, where one parent assumed the comforting role while the other continued searching and attempted to follow any recommendations available. Unclear recommendations, as well as limited understanding of how mobilization could reduce the pain, made parenting difficult and further highlighted schisms in parenting, if they existed. The pain experience is isolating for both parents and adolescents within their respective social groups. Feelings of isolation led parents to doubt their own competence with respect to parenting. As pain worsened or failed to respond to treatment recommendations, fear that the pain would never resolve and their child would never reach her potential mounted. While fear increased suffering, it also motivated a continued search for treatment because a future of chronic pain and disability was not one parents were willing to accept for their child.

The two major themes identified by Jordan et al. (2007) were "struggle for control and coherence" (p. 51) and "a very different life" (p. 53). Overall, parents felt uncertain and distressed by their children's pain. Parents had to adapt to a life different than what they had expected, and in many ways, lost their own lives in the process of attending to their child's pain-related needs. Similar to the study by Gaughan et al. (2014), parents feared for their child's future and also described feeling they had lost the child who existed before the pain. A few positive feelings emerged, mainly related to the relationship the parents had with their child. Parents felt that their relationship was closer than would usually be expected with an adolescent. This in itself is problematic because this type of relationship, although in ways positive for the parent, disrupts the adolescent's developmental task of gaining independence.

Including the Parents in the Treatment of CRPS

Including parents in the treatment of CRPS is essential for therapy to be effective. Arguably, remission from CRPS is nearly impossible without the inclusion of parents because of the significant role parents play in the lives of their children. One pain clinic in Australia incorporates a family systems approach into their treatment model (Kozlowska et al., 2008). With an understanding that the family influences the child's pain, clinicians utilize interactions they have with the family to address concerns, such as family anxiety, conflict, anger with the medical system, and unresolved loss or trauma (Kozlowska et al., 2008). Additionally, supporting and educating parents about unique treatment strategies utilized for CRPS can reduce confusion. By building rapport with the family, either in the inpatient setting or through a series of outpatient visits, the clinician can broach discussions about family distress and conflict. These discussions may assist both the adolescent and the parent in identifying stressors and developing the skills to cope with these stressors. Nurses at the bedside can use these strategies when caring for a patient with CRPS even if they are not a part of a formal program or if the program does not include family therapy.

Empowerment has been identified as the feeling of being able to effectively parent a child with chronic pain (Gaughan et al., 2014). Family therapy can teach parents how to reinforce their children's positive coping skills, promote participation in therapy, and support developmentally appropriate independence, all while reducing attention to pain behaviors (Maynard et al., 2010). Operant strategies are a particular type of parenting that some programs have utilized in family therapy. These strategies include minimizing the parental response to the child's pain complaints and encouraging adaptive parenting (Palermo et al., 2014). These changes in parenting style are necessary to overcome the natural regression in parenting that occurs as parents attempt to comfort and support their child who is suffering with chronic pain.