Dianna Boone, Thomas J. Parkman, and Jason Van Allen
Clinical Psychology Program, Department of Psychological Sciences, Texas Tech University, Lubbock, TX, USA
Pediatric psychology is defined by the Society of Pediatric Psychology as “an integrated field of science and practice in which the principles of psychology are applied within the context of pediatric health” (American Psychological Association, 2009). Pediatric psychologists can work in a variety of settings with children with a wide range of chronic illnesses including asthma, cancer, diabetes, obesity, pediatric sleep problems, sickle cell disease, and others (Aylward, Bender, Graces, & Roberts, 2009; Roberts, Biggs, Jackson, & Steele, 2011). The scope of practice for a pediatric psychologist can include screening for psychopathology in healthcare settings, developing interventions for children with chronic illnesses, and promoting the health and development of children and adolescents from all disease groups (Spirito et al., 2003). Pediatric psychologists are in great demand due to the prevalence of pediatric chronic conditions in the United States. For example, in the United States, 13,000 children are diagnosed with cancer each year, 13,000 children are diagnosed with type 1 diabetes, and 9 million children suffer from asthma (Compas, Jaser, Dunn, & Rodriguez, 2012). Obesity during childhood and adolescence is also a serious public health problem in the United States (Ogden, Carroll, Kit, & Flegal, 2014), and medical trauma results in many pediatric hospital admissions each year (Compas et al., 2012).
This chapter provides an overview of the clinical applications of pediatric health psychology including the importance of adjustment to new diagnoses and medication adherence. This chapter also discusses the various forms of treatment delivery and how the settings and modalities of treatments are changing. Finally, this chapter will discuss cultural and diversity issues in pediatric health psychology.
Due to advances in the treatment of chronic illnesses, pediatric illnesses that were once fatal can now be treated much more effectively than in previous decades (Mokkink, Van der Lee, Grootenhuis, Offringa, & Heymans, 2008). These improved outcomes are a result of successful early detection and diagnosis, as well as effective treatment of many previously life‐threatening illnesses (Compas et al., 2012). As a result, children and adolescents now have to adjust to living with chronic illnesses and medical conditions. These chronic illnesses present children, adolescents, and their families with significant stress that can contribute to emotional and behavioral problems as well as interfere with adherence to treatment regimens (Compas et al., 2012). Further, many pediatric illnesses are worsened by stress encountered in other aspects of children's lives. It is therefore essential to understand the ways that children and adolescents adjust to living with a chronic condition in order to develop effective interventions to enhance coping and adjustment.
Adjustment to a pediatric illness can be different for each child, depending on if he or she receives a diagnosis of a chronic illness versus a diagnosis of an acute illness. An acute illness is differentiated from a chronic illness by the speed of symptom onset and the duration of symptoms. An acute illness is a condition of short duration that starts quickly and has severe symptoms. However, a chronic illness is a health problem that lasts 3 months or more, affects a child's normal activities, and requires frequent hospitalizations, home healthcare, and/or extensive medical care (Mokkink et al., 2008). Research has revealed that chronic conditions may result in greater psychological and physical stress than acute illnesses that resolve quickly (Marin, Chen, Munch, & Miller, 2009). Individuals with a chronic illness may experience more psychological stress, especially during childhood or adolescence, because the illness can threaten one's identity, affect one's body image, and disrupt one's lifestyle (Gignac, Cott, & Badley, 2000). Chronic conditions are also typically characterized by different phases over the course of an individual's lifetime (e.g., acute periods, stable periods, remissions), in which each phase presents its own physical and psychological problems. In addition, one's family life could be dramatically altered due to a pediatric chronic illness, resulting in unfilled roles, loss of income, and costs of treatment. As a result, individual and familial adjustment to chronic illness is an important predictor of long‐term outcomes.
Generally speaking, researchers have examined a variety of stress responses in children and adolescents, emphasizing both controlled responses and automatic responses (Compas et al., 2012). Automatic stress responses include “temperamentally based and conditioned ways of reacting to stress such as emotional and physiological arousal, automatic thoughts, and conditioned behaviors” (Compas et al., 2012). However, in order to effectively cope with stress, controlled responses are typically preferred, which involve things children and adolescents do to manage and adapt to stress (Compas et al., 2012). Overall, the strategies a child or adolescent uses to manage stress can provide an idea as to how they will adjust or cope with a chronic illness. It is important to note, however, that when coping with health‐ and illness‐related stressors, the controllability or perceived controllability of the stressor may be a key dimension in determining the efficacy of particular coping strategies (Osowiecki & Compas, 1998).
In recent years, researchers have developed interventions that aim to reduce stress and improve coping strategies in children after being diagnosed with a pediatric illness. For example, Kassam‐Adams et al. (2015) assessed the effectiveness and feasibility of a web‐based intervention aimed to reduce the stress of children who recently suffered an injury or were diagnosed with a chronic illness. Children ages 8–12 years were randomized to either a coping intervention (e.g., an interactive web‐based game promoting coping strategies) or a 12‐week wait list (Kassam‐Adams et al., 2015). Outcome measures included child PTSD symptoms and pediatric quality of life. This study demonstrated that a novel, interactive, game‐like web‐based intervention for children exposed to medical trauma is feasible to deliver and has the potential to prevent posttraumatic stress after being diagnosed with a medical illness (Kassam‐Adams et al., 2015).
Interventions targeting caregivers have also been developed, in light of research demonstrating an association between parental functioning and children's adjustment to a chronic illness (Palermo, Law, Essner, Jessen‐Fiddick, & Eccleston, 2014). For instance, Palermo et al. (2014) examined the effectiveness and feasibility of a problem‐solving skills training (PSST) intervention to reduce distress in caregivers of children with chronic pain. This study revealed that the parent‐focused PSST intervention was effective in reducing distress among caregivers of children and adults with a variety of medical problems (Palermo et al., 2014). Results suggest that a PSST intervention is a feasible and acceptable intervention for parents of children with chronic pain. The intervention used in this study has the potential to help children with other chronic illnesses develop coping strategies and enable them to function effectively in their daily lives (Palermo et al., 2014).
In sum, chronic illnesses present children and their families with significant stress that can contribute to psychosocial problems, such as depression and anxiety, nonadherence to medication regimens, and disruptions to family life (Compas et al., 2012). These interventions have shown that they can help improve coping strategies and reduce stress in children adjusting to life with a chronic illness. Researchers need to continue examining how children and families adjust to pediatric illnesses to further inform and develop interventions.
The term “adherence” refers to the extent to which a person's behavior (e.g., taking medication, following a diet, and/or implementing lifestyle changes) corresponds with recommendations from a healthcare provider (World Health Organization [WHO], 2006). The assessment and treatment of medication adherence has become essential to improving health outcomes as the prevalence of pediatric chronic illnesses has increased (Quittner, Modi, Lemanek, Levers‐Landis, & Rapoff, 2008). Research has illustrated that the overall treatment adherence rate is approximately 50% for pediatric populations (Rapoff, 1999). Nonadherence to medical regimes can potentially interfere with the efficacy of medications, resulting in failure to reach treatment goals, increased visits to the emergency room, and increased hospitalizations (Lee et al., 2014). In addition, other negative consequences of nonadherence include inappropriate changes in treatment regimens, decreased quality of life (Fredericks et al., 2008), incorrect medication dosage adjustments, and increased costs, among others (Lee et al., 2014).
Medication adherence in pediatric populations presents unique challenges. Types of barriers that are associated with poor medication adherence in pediatric patients include cognitive factors (e.g., forgetting, poor planning), aversive medication properties or difficulties ingesting medication (e.g., hard to swallow, bad taste, vomiting, spitting), high cost of medication, or voluntary resistance toward taking the medication (Hommel & Baldassano, 2010; Lee et al., 2014; Simons, McCormick, Mee, & Blount, 2009). Medication adherence can be especially difficult for young pediatric patients who may not understand the purpose of their medication and who depend on their caregivers to administer their prescribed medication (Lee et al., 2014). Thus, it is extremely important that both children and their caregivers participate in the medication adherence process.
In addition, it is also common for adolescents to not regularly follow their medication regimens (Staples & Bravender, 2002). Factors that could negatively impact adolescents' medication adherence include embarrassment, stigmatization, and inability to self‐regulate (e.g., ability to control one's behaviors, emotions, and cognitions; Berg et al., 2014). Berg et al. (2014) found that self‐regulation in a number of domains (i.e., general executive functioning, attention, self‐control, and emotion regulation) was associated with adolescents' adherence behaviors in a sample of youths with type 1 diabetes, such that youths who reported lower self‐regulation abilities demonstrated worse adherence behaviors than those who reported higher self‐regulation abilities.
In addition, barriers to adherence have been associated with negative psychosocial outcomes such as less family cohesion, less emotional expression, and greater conflict among family members (Simons & Blount, 2007), which highlights the importance of efforts aimed to reduce barriers and improve pediatric adherence.
Recently, Western medicine is recognizing the importance of viewing patient care from the biopsychosocial model, which emphasizes the interplay of biological, psychological, and social factors as they either influence the maintenance of health or acquire the capacity to cause illness (Smith & Nicassio, 1995). The importance of approaching treatment from this holistic standpoint is so salient and necessary that it has been endorsed and adopted by the WHO (2002). Consequently, pediatric psychologists are now delivering treatment for acute and chronic pediatric physical and behavioral health conditions in a number of diverse settings. Such settings include inpatient and outpatient medical or psychiatric facilities and pediatric primary care clinics (Borschuk, Jones, Parker, & Crewe, 2015).
In these medical environments, pediatric psychologists are typically an integral component of integrated teams composed of psychologists, doctors, nurses, caseworkers, and even administrators who work collaboratively to determine the best course of treatment for the patient (Butler et al., 2008). One of the charges of the pediatric psychologist in this setting is to provide secondary care via psychodiagnostic assessment. Psychometric tests are often used in this environment in order to identify treatment needs, assist with differential diagnoses, monitor treatment progress, and facilitate risk management (Wahass, 2005). Assessments of intelligence, personality, mental status, motivation, health behavior, and presence of psychopathology are typically conducted by the pediatric psychologist and are useful aids in ensuring children receive the highest standard of care.
Another charge of pediatric psychologists in medical settings is to provide primary care via behavioral interventions (e.g., cognitive behavioral therapy) targeted at treating or even preventing behavioral disturbances or psychopathology (e.g., anxiety) that may be exacerbating the child's presenting concerns or impeding their recovery (Borschuk et al., 2015). Although limited, research does suggest that behavioral health interventions are effective at mitigating anxiety (Kolko et al., 2014), behavioral problems (Berkovits, O'Brien, Carter, & Eyberg, 2010), and depression (Richardson, McCauley, & Katon, 2009).
Other crucial roles of pediatric psychologists include facilitating communication among medical professionals, managing difficult interpersonal situations between patients and their families, and providing grief counseling as necessary. Finally, the pediatric health psychologist also facilitates the post‐discharge outpatient follow‐ups in order to ensure the child is adhering to their treatment regimen, there are no residual complications, and, if necessary, the psychologist is prepared to provide referrals to community‐based care providers (Kolko & Perrin, 2014).
With increasing frequency children are receiving care via community‐based programs and facilities, such as schools (Borschuk et al., 2015). In fact, research suggests that more children are receiving services in community‐based outpatient clinics (satellite healthcare facilities that provide health and wellness services outside of the primary care setting) and schools than they are in primary or specialty care clinics (National Survey on Drug Use & Health, 2009). The utility of the pediatric psychologist in the community can be found in their ability to facilitate support groups for children seeking emotional support due to terminal illnesses or chronic pain, assist in medication/treatment adherence, and administer psychometric tests of functioning (Straub, 2014). Furthermore, pediatric psychologists in the community setting also aim to disseminate public health information and provide psychoeducation to children regarding illnesses and disease prevention (Straub, 2014).
Telemedicine can be broadly defined as the use of telecommunications technologies to provide medical information and services (Perednia & Allen, 1995). The use of telemedicine can help overcome barriers such as geographic challenges, a lack of healthcare specialists, and social and economic barriers (Marcin, Shaikh, & Steinhorn, 2016; Van Allen, Davis, & Lassen, 2011). In recent years, telemedicine has been increasingly used for pediatric health services, and research supports the utility of interventions incorporating telemedicine for children in rural settings (Van Allen et al., 2011). For example, Davis et al. (2013) demonstrated that a telemedicine intervention was equally as effective as an intervention involving visits from a physician in improving children's BMI, behavior problems, and dietary and physical activity behaviors. This study also demonstrated that telemedicine or similar methods of telehealth can be a feasible method of treatment delivery of empirically supported treatment interventions (Davis, Sampilo, Gallagher, Landrum, & Malone, 2013). Similarly, a study conducted by Chorianopoulou, Lialiou, Mechili, Mantas, and Diomidous (2015) also revealed that the utilization of telemedicine resulted in improved access to specialized healthcare, reduced hospitalizations, and emergency room visits in a sample of children from a rural population (Chorianopoulou et al., 2015). Izquierdo et al. (2009) found that children with diabetes who received telemedicine had lower hemoglobin A1c levels and reported higher levels of pediatric quality of life, compared with children who received usual care. Children in the telemedicine group also reported a reduction in urgent diabetes‐related calls initiated by the school nurse and fewer hospitalizations and emergency department visits (Izquierdo et al., 2009). In addition, Romano, Hernandez, Gaylor, Howard, and Knox (2001) investigated whether specialist care delivered by telemedicine would result in comparable improvements in quality of life and asthma symptoms, compared with face‐to‐face encounters with specialists. The results indicated that patients reported an increase in mean number of symptom‐free days, a reduction in mean symptom scores, and improvements in quality of life (Romano et al., 2001).
It is likely that more interventions will be delivered through telemedicine technologies in the near future. The use of telemedicine and digital technologies can help children and families overcome numerous geographic and economic barriers as well as increase access to interventions and other forms of treatment.
Disparities within the realm of pediatric psychology are predominantly driven by variables such as race, ethnicity, and socioeconomic status. Unfortunately, children of color, especially those born into low‐income families, lag behind their more affluent, majority peers in health status (Cheng, Dreyer, & Jenkins, 2009). This is of particular concern given the fact that such disparities that arise during childhood positively correlate with chronic illness as an adult (Braveman & Barclay, 2009). Also, the dearth of available pediatric psychologists in underprivileged or rural areas is also a force driving these disparities in health status.
These disparities point to the need for pediatric psychology to embrace and practice culturally competent care, care that is sensitive to the needs, health literacy, and health beliefs of pediatric patients and their families (Cheng, Emmanuel, Levy, & Jenkins, 2015). Current research demonstrates that health promotion and prevention interventions may be more effective in improving quality of care and patient safety if they are tailored to the cultural identity of the target population. However, there is a paucity of research as to what constitutes a “culturally sensitive” intervention, and whether such an initiative could be capable of facilitating greater changes in behavior than non‐culturally specific interventions is unclear (Resnicow et al., 2002).
With that said, there are a number of measures the field of pediatric psychology can enact in order to ameliorate disparities in health status among children of racial and ethnic minorities and socioeconomic status. Research suggests that almost all children in the United States have annual well‐child visits (Bloom, Cohen, & Freeman, 2011); thus, increasing the involvement of pediatric psychologists in the primary care setting—in the role of gatekeeper to behavioral health services—will have the effect of fostering normative development and decreasing health disparities. Furthermore, given the powerful deleterious effect of socioeconomic status on service availability, the field of pediatric health psychology must seek to make access to its services more universally accessible and cost‐effective. This can be done through the proliferation of pediatric psychologists throughout community‐based care providers, perhaps with the future aid of government or community cost subsidization.
Pediatric psychology is a rapidly expanding field of psychology. Pediatric psychologists work in a multitude of professional settings in the evaluation and treatment of children who present with a wide range of chronic illnesses. It is critical to understand how children and families adjust to pediatric illness to further inform and develop more effective interventions for these individuals. Pediatric psychologists work with children and families, in conjunction with physicians, to reinforce the importance of medication adherence to maximize positive health outcomes. Pediatric psychologists are working with children in schools and community settings, not just the primary care setting, to promote medical and mental health. The use of telemedicine and digital technologies has become important delivery systems for providing education and interventions for children and families in the rural setting. Identifying pertinent cultural variables and considerations are critical for effective health promotion and prevention interventions. Pediatric psychologists and researchers must continue to develop evidence‐based treatments and examine resilience factors (e.g., self‐esteem, internal locus of control, motivation, health behaviors, coping strategies, emotional regulation) that prevent children from developing chronic illnesses and a lower quality of life. Through these measures, the field of pediatric psychology can ensure that children grow into healthy and well‐adjusted adults.
Dianna Boone, MA, is a second year student in the Clinical Psychology Program at Texas Tech University, under the mentorship of Dr. Jason Van Allen. She received her MA in Rehabilitation and Mental Health Counseling from the University of South Florida. Her research interests include pediatric psychology and childhood obesity.
Thomas J. Parkman, BS. T.J. is a third year clinical psychology doctoral student and research assistant in the ENERGY Lab at Texas Tech University, under the mentorship of Dr. Jason Van Allen, PhD. T.J.'s interests rest within the realms of pediatric health psychology and behavioral medicine.
Jason Van Allen, PhD. Jason is an assistant professor in the Clinical Psychology Program at Texas Tech University. He received his PhD in Clinical Child Psychology from the University of Kansas, and his research focuses on pediatric psychology and childhood obesity.