Psychologists as Pivotal Members of the Pediatric Palliative Care Team.

CONTEXT: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams. OBJECTIVES: This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues. METHODS: Existing literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC. RESULTS: As children with serious illness are at risk for mental and physical health symptoms, psychologists' specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being. CONCLUSIONS: With strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families.

Competencies for Psychology Practice in Pediatric Palliative Care.

OBJECTIVE: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists practicing in PPC, support their systematic inclusion as part of PPC teams, and advance trainee knowledge of PPC principles and skills, the PPC Psychology Working Group sought to develop core competencies for psychologists in this subspecialty. METHODS: A Working Group of pediatric psychologists with expertise in PPC met monthly to review literature and existing competencies in pediatrics, pediatric and subspecialty psychology, adult palliative care, and PPC subspecialties. Using the modified competency cube framework, the Working Group drafted core competencies for PPC psychologists. Interdisciplinary review was conducted by a diverse group of PPC professionals and parent advocates, and competencies were revised accordingly. RESULTS: The six competency clusters include Science, Application, Education, Interpersonal, Professionalism, and Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and behavioral anchors (i.e., examples of concrete application). Reviewer feedback highlighted clarity and thoroughness of competencies and suggested additional consideration of siblings and caregivers, spirituality, and psychologists' own positionality. CONCLUSIONS: Newly developed competencies for PPC psychologists highlight unique contributions to PPC patient care and research and provide a framework for highlighting psychology's value in this emerging subspecialty. Competencies help to advocate for inclusion of psychologists as routine members of PPC teams, standardize best practices among the PPC workforce, and provide optimal care for youth with serious illness and their families.

"You Look Perfectly Healthy to Me": Living With Postural Orthostatic Tachycardia Syndrome Through Adolescents' and Parents' Eyes.

Postural orthostatic tachycardia syndrome (POTS) is an autonomic dysfunction that impairs quality of life (QoL). Increased familiarity with the lived experiences of youth with POTS better informs our understanding of this condition and its impact on QoL, provides context and depth to existing research, and improves patient-centered care. Thus, this qualitative study seeks to develop a more robust understanding of QoL in this understudied population. Youth with POTS (N = 6) and their parents (N = 8) participated in semi-structured interviews. Following saturation, data were analyzed via conventional content analysis, including code/theme identification and member-checking. Four themes were identified (1) negative changes in functioning, (2) invalidation and difficulties living with an invisible condition, (3) trust and advocacy, and (4) need for increased resources and understanding. Findings suggest POTS negatively impacts adolescents' QoL across domains. Based on participants' responses, developing POTS-specific resources and integrating mental health services into interdisciplinary POTS treatment may improve youth's QoL.

Psychosocial outcomes of parents in pediatric haploidentical transplant: parental hematopoietic cell donation as a double-edged sword.

Parents are increasingly used as donors for their child's haploidentical hematopoietic cell transplant, creating a dual role for parents that may increase the stress of caring for their ill child. Empiric research on the psychological adjustment of parental donors is lacking. We conducted a retrospective survey of parents (n = 136) whose child underwent transplant with a parental donor or a matched-unrelated donor, including both donor and nondonors, and both parents of survivors and bereaved. All parents completed standardized measures of quality of life, depression, anxiety, post-traumatic stress, and life satisfaction. Bereaved parents also completed measures of their grief response, while parents of survivors completed measures of the parent-child relationship. The overall sample reported psychological functioning near normative levels, but bereaved parents demonstrated significantly poorer outcomes across all measures. The effect of donor status differed by transplant outcome: for parents of survivors, donors reported better mental health than nondonors, but amongst bereaved parents, donors fared more poorly than nondonors. Bereaved donors reported greater difficulties with grief than nondonors. Results suggest that serving as donor can be a double-edged sword, acting as a protective factor when there is a successful outcome but a significant risk factor when the child does not survive.

"Giving the gift of life twice": Understanding the lived experiences of parent donors and nondonors in pediatric haploidentical hematopoietic cell transplantation.

BACKGROUND: The use of parental donors in pediatric haploidentical hematopoietic cell transplantation is increasing, but research on the psychosocial impact of parental donation is currently limited. OBJECTIVES: As part of a larger study, we conducted a retrospective, qualitative analysis to explore parental perceptions of the donation process and the impact of being a donor (or nondonor) on parents' adjustment and coping with their child's transplant experience. METHODS: Parents/caregivers of children who underwent transplantation with a parental donor or a matched unrelated donor (N = 136) participated in interviews and completed an open-ended questionnaire. RESULTS: Six themes were identified in the data: level of understanding and satisfaction; perception of choice; preparation for donation; perceptions of donation and infusion; benefit finding; and psychological impact of transplantation. Most parents were satisfied with the information they received and reported a good understanding of transplantation and donation procedures. Parents were divided on perspectives of choice, but their responses reflect that the necessity of saving their child's life does not allow for choice. They described considerable effort to prepare for transplantation, physically, emotionally, and logistically. Parents acknowledged the psychological impact while identifying positive outcomes that resulted from their child's transplant journey. CONCLUSIONS: Results highlight the unique experiences of parental donors and nondonors from the anticipation phase to the completion of their child's transplant. Additionally, findings inform supportive care guidance by highlighting the need to assess parental donors' emotional functioning, provide support post donation, and conduct bereavement follow-up.

Social support and siblings of children with cancer: A scoping review.

OBJECTIVE: Social support is essential in healthy adjustment to life stressors. This scoping review examines how social support has been conceptualized, operationalized, and studied among siblings of children with cancer. Gaps in the current literature are identified, and future research directions are proposed. METHODS: A rigorous systematic scoping review framework guided our process. Medline, Embase, CINAHL, PsycINFO, and Scopus were searched for literature regarding social support and siblings of children with cancer. After screening, 57 articles were identified (n = 26 quantitative, n = 21 qualitative, and n = 10 multi-method) and their content extracted for summarization. RESULTS: The majority of studies (n = 43, 75.4%) were descriptive; 14 (24.6%) included interventions, and of those, four were experimental. Few studies used a clearly defined theoretical framework, or validated tools to measure social support. Studies explored perceived social support needs of siblings, the provision and availability of formal support through interventions and related outcomes, and informal family social supports. A variety of support types were found to be helpful to siblings in different ways. CONCLUSIONS: Social support is a prevalent topic in the literature regarding siblings of children with cancer. It is unclear what types of support are most important due to how it has been conceptualized and measured. Despite some methodological limitations, greater levels of social support have been linked to better adaptation among siblings of children with cancer. Future work is warranted to identify the most beneficial types of support for siblings based on their age, developmental stage, and the cancer trajectory.

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents.

OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents. METHODS: As part of a larger study examining shared decision-making near the end of life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis. RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.

Transition to Adult IBD Care: A Pilot Multi-Site, Telehealth Hybrid Intervention.

OBJECTIVE: Transition to adult IBD care continues to be a challenge. Efficacious models of improving transition to adult care in the United States are lacking. We present data from a pilot, prospective, non-randomized, intervention implemented at IBD centers in the Midwest and Southeast United States. DESIGN AND METHODS: Adolescents and young adults (AYAs; 16-20 years) with IBD and their parents completed a 4- to 5-month transition program (1 in-person group session; 4 individual telehealth sessions). Primary outcomes were feasibility (i.e., recruitment, retention, fidelity) and acceptability (i.e., program satisfaction). Secondary outcomes were changes in transition readiness, self-management skill acquisition, perceived readiness to transfer to adult care, and disease knowledge. RESULTS: The study exceeded goals for recruitment (target N = 20; actual: 36) and retention (target: 80%; actual: 86.11%). On average, it took participants 20.91 ± 3.15 weeks to complete our 4- to 5-month intervention and there were no deviations from the study protocol. Participant ratings for overall program satisfaction, perceived helpfulness, and program length and format were positive. Increases in transition readiness, t(30) = 8.30, d = 1.49, p < .001, self-management skill acquisition, t(30) = 3.93, d = 0.70, p < .001, and disease knowledge, t(30) = 8.20, d = 1.58, p < .001 were noted. AYA- and parent-perceived transfer readiness also improved (p's < .05; d's = 0.76-1.68). CONCLUSIONS: This article presents feasibility and acceptability data for a 4- to 5-month transition intervention. Improvements in AYA transition readiness, self-management skill acquisition, IBD knowledge, and AYA/parent perceived transfer readiness were also observed.

Healing the Hearts of Bereaved Parents: Impact of Legacy Artwork on Grief in Pediatric Oncology.

CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. OBJECTIVES: This study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer. METHODS: Twelve bereaved parents and 12 healthcare providers participated in individual semistructured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis. RESULTS: Five themes emerged. Legacy artwork allows for family bonding and opens communication regarding the child's impending death; provides opportunities for parents to engage in life review and meaning-making; is often displayed in the parents' home after the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; can ameliorate parents' grief after their child's death; and may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths. CONCLUSION: Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.

Barriers to Treatment Adherence Among College Students with Attention-Deficit/Hyperactivity Disorder.

OBJECTIVE: The current study sought to obtain a longitudinal perspective of and quantitatively assess barriers to medication adherence experienced by college students with attention-deficit/hyperactivity disorder (ADHD). Thus, we examined semester-long trends in barriers to adherence in addition to the relationships between barriers and medication adherence and barriers and quality of life. METHODS: Participants were college students diagnosed with ADHD. Throughout a Fall semester, participants completed 4 sets of online questionnaires and attended 4 in-person visits, which included pill counts and written questionnaires. Participants completed measures assessing barriers to adherence and health-related quality of life, and adherence was measured via pill counts. Mean values of barriers, adherence rate, and quality of life were used for all analyses. RESULTS: Of the 45 students surveyed, mean adherence rate was 56.70%, and 84.45% of participants reported at least 1 barrier. Across the semester, participants reported experiencing an average of 3.07 barriers, and a consistent barrier reported was not realizing when pills run out. Although reported barriers were unrelated to adherence, the results showed that barriers were associated with lowered quality of life, specifically lower overall quality of life in addition to lower emotional functioning, psychosocial health, school functioning, and physical functioning. CONCLUSION: Barriers to adherence appear to be common in college students with ADHD, and certain barriers are consistent with the planning difficulties observed in individuals with ADHD. Because students experiencing more barriers had lower quality of life, interventions are needed to improve students' overall illness management experience.

Legacy Artwork in Pediatric Oncology: The Impact on Bereaved Caregivers' Psychological Functioning and Grief.

Background: Legacy-making (i.e., a way for patients with terminal illness to create or do something for others as a means of remembrance) is rising in popularity in palliative medicine, although only one study has examined its impact in a pediatric population. Objective: In response to the gaps in literature, this study (1) examines the impact of legacy artwork on bereaved caregivers' psychological functioning and grief and (2) compares caregivers' perceptions of support provided by the hospital throughout their child's cancer journey between the intervention and control groups. Methods: Forty-four caregivers whose children died of cancer completed a demographic questionnaire specifically created for this study, the Brief Symptom Inventory-18, and the Prolonged Grief Disorder-13. They also answered questions regarding supportive services provided to them toward the end of the child's life, at the time of death, and after the child's death. Those caregivers who endorsed participating in legacy artwork were identified as the intervention group, whereas those who did not were classified as the control group. Results: There were no significant differences in psychological functioning among caregivers who participated in legacy artwork versus those who did not participate. However, caregivers who created legacy artwork with their child reported significantly less symptoms of prolonged grief and a greater perception of support from health care providers compared with caregivers who did not engage in this activity. Conclusion: Although preliminary, these findings suggest that legacy artwork may have the potential to improve grief and overall satisfaction of support from the hospital in bereaved caregivers.

Subjective Versus Objective Measures of Medication Adherence in Adolescents/Young Adults with Attention-Deficit Hyperactivity Disorder.

OBJECTIVE: To examine the frequency of medication nonadherence using both objective and subjective data and to compare the differences between these measures in adolescents and young adults (AYAs) with attention-deficit hyperactivity disorder (ADHD). METHOD: Fifty-four participants enrolled. Frequency (mean percent of prescribed doses not taken) of nonadherence was measured using subjective (visual analog scale) and objective (pill count and electronic monitoring) methods. Differences between measures were compared using t tests and analysis of variances. RESULTS: Objective measures showed that participants missed 40% to 43% of their prescribed doses. Contrastingly, subjective measures indicated that participants missed 25% of their prescribed doses. Frequency of nonadherence was significantly higher when relying on objective measures rather than on subjective measures (t[46] = -4.51, p < 0.01 for pill counts, and t[47] = -4.81, p < 0.01 for electronic monitoring). CONCLUSION: Nonadherence is high in AYAs with ADHD. These individuals tend to overestimate their adherence when self-reporting. Physicians should exercise caution when prescribing based on patient report of adherence and use objective measures when possible.

Parent Perceptions of Their College Students' Self-Management of Attention-Deficit/Hyperactivity Disorder.

PURPOSE: The present study examines parents' perspectives of the experiences and challenges surrounding self-management of Attention-Deficit/Hyperactivity Disorder (ADHD) in their college students. METHODS: Participants were parents of emerging young adults with ADHD prescribed daily medication for their condition. Thirteen individual interviews were conducted using a semistructured interview script guided by the Health Belief Model. The qualitative data were analyzed via directed content analysis. RESULTS: Five themes emerged from the interviews: (1) parents are heavily involved in their child's self-management prior to college, and the abrupt transition of responsibilities is difficult for parents; (2) parents' worries about their child's self-management and functioning are exacerbated by privacy laws and poor communication from child and university; (3) volitional nonadherence is high; (4) obtaining academic accommodations is difficult; and (5) parents recommend a gradual transition, desire enhanced communication from the college, and wish for social support resources in the college setting for their children. CONCLUSIONS: Parents of college students with ADHD are distressed and frustrated by the transition to college. They express the desire to remain continually involved in their child's self-management of ADHD, but several barriers hinder their ability to do so, resulting in fear of the potential consequences on their child's functioning. This collateral information from parents regarding the challenges associated with ADHD self-management experiences in college should result in the development of comprehensive interventions to improve the quality of life in college students with ADHD.

Medication adherence in pediatric asthma: A systematic review of the literature.

OBJECTIVE: To provide a systematic review of correlates of adherence to inhaled corticosteroids (ICS) in pediatric asthma across the individual, family, community, and healthcare system domains. METHODS: Articles assessing medication adherence in pediatric asthma published from 1997 to 2016 were identified using PsychINFO, Medline, and CINAHL. Search terms included asthma, compliance, self-management, adherence, child, and youth. Search results were limited to articles: 1) published in the US; 2) using a pediatric population (0-25 years old); and 3) presenting original data related to ICS adherence. Correlates of adherence were categorized according to the domains of the Pediatric Self-Management Model. Each article was evaluated for study quality. RESULTS: Seventy-nine articles were included in the review. Family-level correlates were most commonly reported (N = 51) and included socioeconomic status, race/ethnicity, health behaviors, and asthma knowledge. Individual-level correlates were second-most common (N = 37), with age being the most frequently identified negative correlate of adherence. Health care system correlates (N = 24) included enhanced asthma care and patient-provider communication. Few studies (N = 10) examined community correlates of adherence. Overall study quality was moderate, with few quantitative articles (26.38%) and qualitative articles (21.4%) referencing a theoretical basis for their studies. CONCLUSIONS: All Pediatric Self-Management Model domains were correlated with youth adherence, which suggests medication adherence is influenced across multiple systems; however, most studies assessed adherence correlates within a single domain. Future research is needed that cuts across multiple domains to advance understanding of determinants of adherence.

Barriers to Transition From Pediatric to Adult Care: A Systematic Review.

Objective: Transition research in each disease group is developing in its own "silo." A comprehensive review of barriers to transition within and across chronic illness groups is needed to facilitate information sharing and larger-scale efforts to overcome barriers and improve patient care. This study systematically reviews and identifies the barriers to transition from pediatric to adult care across pediatric illness populations. Methods: Medline, CINAHL, PsychINFO, Social Services Abstracts, Web of Science, and the Cochrane library databases were searched. Peer-reviewed English articles presenting original data on barriers to transition to adult care, focused on a specific pediatric chronic illness population, and conducted in the United States were included. Study design, population, and barriers were extracted. Barriers were categorized according to the Socioecological Model of Adolescent/Young Adult Readiness to Transition. Articles were evaluated for study quality. Results: Fifty-seven articles were included. The most common barriers to transition fell within the "Relationships" domain (e.g., difficulties letting go of long-standing relationships with pediatric providers) followed by "Access/Insurance" (e.g., difficulty accessing/finding qualified practitioners, insurance issues), and "Beliefs/Expectations" (e.g., negative beliefs about adult care). Barriers related to "Knowledge" (e.g., limited patient/caregiver knowledge about medication/illness and the transition process) and "Skills/Efficacy" (e.g., lack of self-management skills) were also common. While relationship barriers were commonly reported by all, some barriers varied by transfer status (pre- vs. posttransfer). Conclusions: Each chronic illness group experiences illness-specific challenges but certain barriers transcend chronic illness populations. Suggestions to overcome these barriers are provided.

Transition to College and Adherence to Prescribed Attention Deficit Hyperactivity Disorder Medication.

OBJECTIVE: As youth with attention deficit hyperactivity disorder (ADHD) transition to adulthood, they must learn how to manage their ADHD treatment independently. This may be challenging because many of the skills necessary to adhere to treatment (e.g., organization, planning) are impaired in those with ADHD. Using electronic monitoring, we examine trajectories of adherence to medication in a cohort of college students with ADHD. Further, we examine the effect of transitioning to college and executive functioning on adherence. METHODS: Electronic monitors tracked adherence for 51 undergraduate students with ADHD across an academic semester. Multilevel modeling examined individual trajectories in monthly adherence and the role of transition status and self-reported executive functioning on these trajectories. RESULTS: Overall, participants adhered to 53.53% of prescribed doses. Transition status predicted the linear slope in adherence (ß = -8.95, standard error [SE] = 3.61, p < .05), with lower initial adherence among undergraduates transitioning to independence (34.17%) compared with post-transition undergraduates (67.63%; ß = 33.46, SE = 8.00, p < .001). Adherence demonstrated a curvilinear change (ß = -7.23, SE = 1.25, p < .001). It increased from the beginning of the semester to midterms before subsequently declining through the rest of the semester, including during final exams. Executive functioning did not predict adherence (ß = -.10, SE = .02, p = .54). CONCLUSION: Only half of all doses were taken as prescribed. Adolescents transitioning to independence demonstrated the lowest levels of adherence, suggesting that the transition to independence is a high-risk period for poor self-management of ADHD.

The impact of motivational interviewing on adherence and symptom severity in adolescents and young adults with chronic illness: A systematic review.

OBJECTIVE: Given the negative consequences associated with non-adherence in adolescents and young adults (AYAs) with chronic illness, it is important to identify interventions to address this issue. Therefore, this review's primary objective is to evaluate the impact of motivational interviewing (MI) on adherence and symptom level/severity in AYAs with chronic illness using a modified Cochrane method. METHOD: Four databases (e.g., CINAHL, Medline, PsychINFO, and International Pharmaceutical Abstracts) were systematically reviewed. 121 articles were identified in the initial search. Article eligibility was assessed on two tiers using the inclusion criteria. RESULTS: Twelve articles were retained for data extraction. Diabetes, asthma, and HIV were the most common chronic illness populations examined in the study. Eleven of the twelve articles provided support for either improved adherence, symptom reduction, or a combination of both after participants received MI. Quality of life was also enhanced in three studies. CONCLUSION: Because adherence and symptom levels were positively impacted, it appears that MI may be a promising intervention for AYAs with chronic illness in addressing non-adherence and potentially improving quality of life. PRACTICE IMPLICATIONS: Healthcare providers should consider implementing MI in their practice to establish rapport and potentially improve long-term health outcomes for AYAs with chronic illness.

Adherence to Attention-Deficit/Hyperactivity Disorder Medication During the Transition to College.

PURPOSE: The present study explores the medication self-management experiences of adolescents with attention-deficit/hyperactivity disorder (ADHD) during their transition to young adulthood in college. METHODS: Participants were college freshmen with ADHD prescribed daily medication for their condition. Ten individual interviews were conducted using a semistructured interview script. Measures related to ADHD medication management were also completed. Qualitative data were analyzed via directed content analysis and quantitative data via descriptive statistics. RESULTS: Five themes emerged from interviews: (1) transitions to independence are often abrupt, and many adolescents lack critical self-management skills; (2) volitional nonadherence is high due to inaccurate disease beliefs, perceived academic demands, and medication side effects; (3) poor self-management negatively impacts school performance; (4) peer pressure to share medication affects social functioning and adherence; and (5) social support is greatly needed. Common barriers to adherence included "don't feel like taking medication" (90%) and "difficulties in sticking to a fixed medication schedule" (80%). CONCLUSIONS: Participants with ADHD were not prepared to manage their chronic illness independently in context of increased demands and newfound freedom, resulting in negative academic consequences. Social factors also play an influential role in ADHD self-management, particularly related to the isolation associated with sharing the medication and its side effects. Intervention programs targeting medication self-management during the transition to independence are greatly needed for young adults with ADHD as high academic performance in college is critical for future success.