Clinical Practice in Pediatric Psychology

This special issue of Clinical Practice in Pediatric Psychology includes 11 articles illustrating the use of qualitative methods in research focused upon improving clinical practice in pediatric psychology. This introduction to the special issue provides a brief overview of these articles that illustrate the use of these methods to: (a) identify clinical care needs and risk and resiliency factors among families of children with medical conditions; b) develop and refine psychosocial models of care, assessment tools, program materials, and interventions for specific issues and groups; (c) define roles for pediatric psychologists in improving the delivery of pediatric medical care; and (d) provide lessons learned in implementing clinical initiatives within health care systems. It is hoped that these examples motivate those in our field to consider additional training in these methods and partnerships with collaborators with expertise in qualitative methods when designing and conducting research to improve clinical practice.

Numerous qualitative studies suggest that adolescents with chronic pain experience disruptions to their interpersonal relationships. A synthesis of this research has not yet been conducted. Using a qualitative metasynthesis approach, we collated, interpreted and (re)presented what is known about how adolescents with chronic pain and their significant others describe their interpersonal relationships. A systematic search strategy was developed to identify and retrieve all primary studies focused on exploring social relationships of adolescents with chronic pain and their significant others using qualitative methodology published by December 31, 2016. Searches identified 1,309 articles, with 8 articles meeting inclusion criteria. Included articles were reviewed for quality and thematic content. Overall, these articles included 127 participants, comprising adolescents with pain, parents, siblings, and peers. Data was characterized by two themes: restriction and tensions. Findings highlighted the complex and typically deleterious impact of chronic pain on relationships held by adolescents with chronic pain and significant others (e.g., parents). Data illustrated tensions between adolescents’ and others’ perceptions of pain on everyday life in addition to a sense of pain restricting adolescent and parental relationships through processes of isolation and difference. Findings also identified the strengthening of relationships due to challenges associated with living with adolescent chronic pain. Study results highlight the importance of assessing the impact of pain on interpersonal relationships. Second, findings illustrate the need to develop and test treatment approaches to enable adolescents and their family members to maintain and strengthen positive interpersonal relationships and to develop more adaptive social functioning.

Youth with sickle cell disease (SCD) are living longer, requiring transition from pediatric to adult health care. Transition programs have been created to improve transition readiness and help patients take responsibility for their health. The aim of this study was to explore the usefulness of current transition materials and identify unmet transition needs from the perspective of adolescents with sickle cell disease (SCD) and caregivers to refine transition programming and interventions. Focus groups were conducted with 14 adolescents with SCD (Mean age = 14.6 years, SD = 1.9) and 20 caregivers (Mean age = 43.2 years, SD = 9.3) to gather perspectives about transition to adult care, current transition program materials and recommendations for future programming. Four themes emerged: (a) transition skills and knowledge needs, (b) change in health care responsibility, (c) concerns with adult SCD care, and (d) useful transition readiness strategies and resources. The findings of this study were used to develop Web based educational modules, experiential transition skills learning, and an adolescent and caregiver hematology support group. Findings highlight the need to conduct periodic readiness assessments, provide opportunities and scaffolding to learn skills based on readiness level, and help build social support networks to encourage and facilitate learning.

There were 2 related objectives of this qualitative study focused on caregivers of children with sickle cell disease (SCD): (1) to assess caregiver perspectives on the acceptability and utility of the Psychosocial Assessment Tool (PAT) as a screener of family psychosocial risk in pediatric SCD and (2) to examine caregiver perspectives on psychosocial risk factors, as well as their resiliencies and coping strategies, to help inform possible modifications to the PAT. Caregivers (n = 43) of youth with SCD completed the PAT to assess feasibility of administration and a subset (n = 22) completed a qualitative interview organized around principles of cognitive interviewing for instrument validation. Constant comparative analyses involved coding interviews, organizing coding categories into themes, and systematically reintegrating themes regarding caregiver perspectives. Caregivers had positive reactions to the PAT, including its ability to broadly assess risk factors, potential utility in helping connect families to resources, and the brevity and ease of completion. Caregivers described salient family stressors as well as adaptive coping strategies that generally aligned well with areas assessed by the PAT, and also provided feedback that can help inform modification of the PAT to better fit the SCD population. Families of youth with SCD face significant psychosocial stressors but demonstrate resiliency in using adaptive coping strategies. Study results support the continuing development of the PAT as a family psychosocial risk screener in pediatric SCD that can enhance the delivery of evidence-based care and reduce health disparities.

The purpose of this study was to better understand parents’ perceptions of how, if at all, their transgender and gender-nonconforming (TGNC) children exhibited common childhood emotional and behavioral concerns in relation to gender nonconformity/gender dysphoria (GD), and to identify ways in which evidence-based interventions (EBI) targeting emotional and behavioral concerns could be adapted to best serve TGNC children. Qualitative data were gathered from a targeted focus group activity with 40 parents (25 mothers, 15 fathers) of 24 TGNC children ages 4–11 years old. Parents of TGNC children described how 4 prespecified domains of emotional and behavioral problems (i.e., oppositional behavior, anger, sadness, and fears/worries) are characterized in the context of gender-nonconformity/GD. Parents also identified precipitants of these problems. Overall study findings indicate there is a role for EBI adaptation as parents identified many different examples of emotional and behavioral challenges emerging in unique and nuanced ways in TGNC children.

The primary purpose of this study was to gather qualitative information related to contributors of pediatric obesity in rural preschoolers, as well as potential changes to obesity interventions that could help promote the health and well-being of children and families in this population. Qualitative focus groups were conducted with 17 parents (all mothers, 19–26 years old [M = 24.7]) of children 2–5 years old with obesity. All study participants resided within a rural area (in a town or county with a population <20,000) and focus groups were held near their homes. Six primary themes were identified through framework analysis of focus group data: (a) limited access to healthy food options in grocery stores and restaurants; (b) challenges with providing recreational alternatives to screen time, especially those that promote physical activity; (c) severely limited access to weight-management services; (d) comfort and acceptability of telemedicine and other technological advancements for behavioral health services; (e) endorsement of the belief that parents are the primary agents of change for preschoolers’ health behaviors and weight status; and (f) general time management difficulties, which limit the feasibility of traditional face-to-face interventions and have a negative impact on their child’s sleep duration. These themes are discussed in detail, and put into the context of potential changes that could be made to current obesity intervention options for preschoolers living in rural communities. These include using telemedicine to increase reach, considering parent-only interventions, and incorporating behavioral sleep medicine intervention components.

Although many siblings show resilience in the face of childhood cancer, others report clinical levels of distress during and after cancer treatment. Psychosocial care is recommended for siblings, but systematic screening to identify siblings currently experiencing or at-risk for psychosocial difficulties is not routine. As part of a program of research to develop feasible procedures for sibling screening, the current study used qualitative methods to gather the perspectives of parents and siblings regarding barriers to sibling psychosocial screening, ways to mitigate those barriers, and preferred screening procedures. A purposive sample of families of children with cancer (n = 29 parents, n = 17 siblings ages 8–17) participated in semistructured qualitative interviews. Barriers to and preferences for sibling screening (e.g., timing, location, modality) were probed. Applied thematic analysis was used to distill findings. Families reported a strong need for sibling psychosocial screening but also reported barriers (i.e., family disruptions and separations, parental stress, and hesitancy to disclose emotional difficulties by both siblings and parents). Recommendations for addressing these barriers were provided. Sibling screening was preferred near diagnosis and every three months thereafter. Parent and sibling reports were both recommended. Preferred modalities included electronic questionnaire delivered in the hospital/clinic (parents) and clinical interview (siblings). In sum, families emphasized the importance of sibling psychosocial screening and suggested ways to achieve this. Involving families in the development of procedures to systematically screen siblings of children with cancer for psychosocial difficulties is an important step in developing feasible, effective strategies to identify siblings in need of clinical care.

Internet-delivered treatment has the potential to expand access to evidence-based cognitive-behavioral therapy (CBT) for pediatric headache, and has demonstrated efficacy in small trials for some youth with headache. We used a mixed methods approach to identify effective components of CBT for this population. In Study 1, component profile analysis identified common interventions delivered in published randomized controlled trials (RCTs) of effective CBT protocols for pediatric headache delivered face-to-face or via the Internet. We identified a core set of three treatment components that were common across face-to-face and Internet protocols: (a) headache education, (b) relaxation training, and (c) cognitive skills training. Biofeedback was identified as an additional core treatment component delivered in face-to-face protocols only. In Study 2, we conducted qualitative interviews to describe the perspectives of youth with headache and their parents on successful components of an Internet CBT intervention. Eleven themes emerged from the qualitative data analysis, which broadly focused on patient experiences using the treatment components and suggestions for new treatment components. In the Discussion section, these mixed methods findings are integrated to inform the adaptation of an Internet CBT protocol for youth with headache.

Although improving end-of-life (EOL) care for children and their families is a national priority (American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care, 2000; Institute of Medicine, 2003), research in the neonatal intensive care unit (NICU) is limited. To improve care, there is a critical need to understand the experiences of these infants and their caregivers. Therefore, we conducted a retrospective study to examine parent perceptions of their infants’ care at EOL in the NICU between 3 months and 5 years of their infant’s death (M = 38.10 months, SD = 16.87). As part of this pilot study, 29 mothers and 16 fathers representing 31 infants participated in qualitative interviews assessing parents’ satisfaction with their involvement in their infants’ care and decision-making and their advice to NICU providers. Four themes emerged from interview data, including parents as partners in care, communication with the health-care team, relationships with staff, and bereavement support. Both mothers and fathers generally felt positive about their role in treatment decisions, relationships with staff, and memory-making activities. Parents noted areas for improvement, including team communication, anticipatory guidance, family inclusion at bedside, and bereavement care. This study provides a deeper understanding of parents’ experience with their infants at EOL and highlights opportunities for enhancing care. Pediatric psychologists can play an important role in facilitating communication between parents and the health-care team as well as providing bereavement support for these vulnerable families.

This study aimed to describe the experience of adolescents with Type 2 diabetes and their caregivers during medical encounters, in an effort to improve clinical care and outcomes in this population. Twenty-eight families were recruited from a Midwestern diabetes clinic. Adolescents (13–18 years old) identified as Black (50%), Caucasian (43%), and Hispanic (7%), with variable levels of glycemic control (glycosylated hemoglobin A1c = 5.1–12.9%). Participants completed demographic and disease-related (adherence) questionnaires. Six adolescent and six caregiver focus groups were conducted and transcribed, coded, and systematically analyzed using principles of thematic analysis. Participants reported moderate to high rates of nonadherence. Qualitative themes indicated multiple factors influencing perceptions of the quality of provider–patient interactions. Participants’ experiences of these interactions was affected by provider characteristics (e.g., gender, age), provider approach and communication style, systemic issues (e.g., long wait times), and caregivers assuming primary roles in medical encounters (e.g., more caregiver participation and caregiver disclosure of nonadherence). Focus group discussions provided rich information about the experiences of adolescents with Type 2 diabetes and implicate barriers in provider–patient interactions, including challenges in triadic interactions and communication around nonadherence, suggesting these areas should be considered in efforts to improve provider–patient interactions within this population.

In an effort to refine a model of clinical care identifying effective communication with health care providers (HCPs) as a key skill for successful transition to adult medical care, we explored the perspectives of emerging adults with Type 1 diabetes (T1D) about factors that impact the quality and content of communication with their HCPs. Twenty emerging adults with T1D were interviewed about health communication experiences with their pediatric HCPs and their readiness for transition to adult diabetes care. Interviews were recorded and transcribed; three raters coded transcripts using conventional content analysis for broad themes. Five themes emerged from the data capturing factors that influence emerging adult–HCP communication: HCP interaction style, HCP consistency, HCP support for autonomy, parental involvement in medical care, and emerging adult comfort with disclosure. Most emerging adults had not discussed transition to adult diabetes care with their HCPs. Some expressed confidence in their ability to transition; others expressed anxiety about the transition process. Findings support the conceptual model of communication and inform clinical implications for working with emerging adults with T1D. Continuity of care should be prioritized with transition-age patients. In addition, HCPs should initiate conversations about engagement in risky behaviors and transition to adult medical care and ensure that emerging adults have time without parents to discuss these sensitive topics. Psychologists can enhance the transition process by facilitating effective patient–HCP communication and coaching both patients and HCPs to ask questions about risky behaviors and transition to adult medical care.

Pediatric settings are increasingly called upon to implement early childhood developmental and behavioral health screening as an early identification and health promotion strategy. Understanding the dynamic barriers and facilitators of implementation at various stages will help implementers plan for and address these factors in support of high quality implementation. Our research supported this goal by analyzing longitudinal, qualitative data. There were 128 semistructured interviews conducted with pediatric clinic and implementation providers across four years. Interviews were transcribed, coded, and synthesized using rigorous qualitative methods. Results were produced using an iterative process to summarize, analyze, and consolidate themes about screening implementation over time. Barriers and facilitators of implementation included characteristics of screening implementation as well as contextual characteristics of the pediatric primary care setting. Some implementation themes were stable over time whereas others demonstrated shifts. Results are discussed in terms of lessons learned for successfully integrating this critical preventive practice within pediatric clinics.