Allied health and nursing practices in pediatric solid organ transplantation: An international survey.

INTRODUCTION: With improved survival in pediatric solid organ transplantation (SOT) care has focused on optimizing functional, developmental, and psychosocial outcomes, roles often supported by Allied Health and Nursing professionals (AHNP). However, there is a scarcity of research examining frameworks of clinical practice. METHODS: The International Pediatric Transplant Association AHNP Committee developed and disseminated an online survey to transplant centers as a quality improvement project to explore AHNP practice issues. Participant responses were characterized using descriptive statistics, and free-text comments were thematically analyzed. Responses were compared across professional groups; Group 1: Advanced Practice Providers, Group 2: Nursing, Group 3: Allied Health. RESULTS: The survey was completed by 119 AHNP from across the globe, with responses predominantly (78%) from North America. Half of respondents had been working in pediatric transplant for 11+ years. Two-thirds of respondents were formally funded to provide transplant care; however, of these not funded, over half (57%) were allied health, compared to just 6% of advance practice providers. Advanced practice/nursing groups typically provided care to one organ program, with allied health providing care for multiple organ programs. Resource constraints were barriers to practice across all groups and countries. CONCLUSION: In this preliminary survey exploring AHNP roles, professionals provided a range of specialized clinical care. Challenges to practice were funding and breadth of care, highlighting the need for additional resources, alongside the development of clinical practice guidelines for defining, and supporting the role of AHNP within pediatric SOT. Professional organizations, such as IPTA, can offer professional advocacy.

An international survey of allied health & nursing professionals during the COVID-19 pandemic: Perspectives on facilitators of & barriers to care.

BACKGROUND: Allied health and nursing professionals (AHNP) are integral members of transplant teams. During the COVID-19 pandemic, they were required to adapt to changes in their clinical practices. The goal of the present study was to describe AHNP perceptions concerning the impact of the pandemic on their roles, practice, and resource allocation. METHODS: An online survey was distributed globally via email by the International Pediatric Transplant Association to AHNP at transplant centers from September to December 2020. Responses to open-ended questions were collected using an electronic database. Using a thematic analysis approach, coding was conducted by three independent coders who identified patterns in responses, and discrepancies were resolved through discussion. RESULTS: The majority of respondents (n = 119) were from North America (78%), with many other countries represented (e.g., the United Kingdom, Europe, Australia, New Zealand, South Africa, and Central and South America). Four main categories of impacts were identified: (1) workflow changes, (2) the quality of the work environment, (3) patient care, and (4) resources. CONCLUSIONS: Participants indicated that the pandemic heightened existing barriers and resource challenges frequently experienced by AHNP; however, the value of team connections and opportunities afforded by technology were also highlighted. Virtual care was seen as increasing healthcare access but concerns about the quality and consistency of care were also expressed. A notable gap in participant responses was identified; the vast majority did not identify any personal challenges connected with the pandemic (e.g., caring for children while working remotely, personal stress) which likely further impacted their experiences.

Medication Barriers and Adherence: Experiences of Pediatric Transplant Recipients.

This study examined associations between scores on the Adolescent Medication Barriers Scale (AMBS) and the Parent Medication Barriers Scale (PMBS), patient and family factors, and medication adherence outcomes. Patients and caregivers from a pediatric solid organ transplantation (SOT) program were recruited for participation. Pediatric SOT recipients ages 10 to 21 years were eligible for participation. Analyses included reliability analyses and regression modeling with posttransplant medication adherence measured by Medication Level Variability Index scores. Seventy-three patients and caregivers completed an AMBS or PMBS questionnaire. Patient-caregiver inter-rater reliability was poor to fair. Greater medication barriers were reported among younger and female patients and families with more children. AMBS scores predicted greater nonadherence, while the PMBS was not predictive of adherence. Results point to the difficulty of assessing barriers to medication adherence and the lack of agreement between adolescent patients and caregivers. AMBS scores were more closely aligned with medication nonadherence, whereas PMBS scores may have been more influenced by family social factors. Adolescent reports of medication barriers may offer multidisciplinary transplant teams greater clinical utility when addressing these challenges with patients. Transplant social workers and psychologists should engage adolescents and caregivers in efforts to address medication nonadherence.

Posttraumatic Growth in Youth, Young Adults, and Caregivers Who Experienced Solid Organ Transplant.

OBJECTIVE: To explore posttraumatic growth (PTG) in pediatric patients who have undergone solid organ transplant (SOT) and their caregivers, and to examine potential correlates of PTG. METHOD: Youth and young adults with a history of SOT (heart, kidney, liver) at least 1 month prior to participation and caregivers completed measures of PTG, demographic, and medical factors. In total, 59 youth (M = 12.68 years, SD = 1.91), 21 young adults (M = 19.37, SD = 0.82), and 95 caregivers (M = 37.95 years, SD = 9.37) participated. RESULTS: Overall, 67% of youth, 76% of young adults, and 89% of caregivers reported PTG within the medium to very high range. Appreciation of Life was the highest PTG subscale across all groups. Youth and caregiver PTG scores were significantly positively correlated. Religious affiliation and religious coping were positively associated with PTG for caregivers, and the relationship yielded large effect sizes for young adults. Caregivers of children with kidney transplants endorsed lower PTG than other organ types and caregivers of children who had an acute medical condition endorsed greater PTG than caregivers of children who had chronic illness. CONCLUSION: Findings suggest the pediatric SOT experience can yield positive changes such as a greater appreciation of life. Although small sample sizes may have led to reduced power for detecting significant findings for some analyses, results suggest religious, medical, and parent-child relationship factors are likely related to PTG in pediatric SOT and warrant future investigation.

Examining the association of medical complications and posttraumatic stress symptoms in pediatric solid organ transplant patients and their caregivers.

BACKGROUND: Post-traumatic stress symptoms (PTSS) have been reported by pediatric solid organ transplant (SOT) patients and their caregivers well after transplantation. This study examined the relationship between PTSS, medication adherence, and medical complications in SOT patients and their caregivers. A secondary aim examined the association between patient and caregiver-reported PTSS. METHODS: Pediatric SOT patients (N = 69) and caregivers (N = 73) reported on PTSS by completing the Child PTSD Symptom Scale (patients 8-17 years) or the Impact of Events Scale-Revised (patients 18 years and older and caregivers). Patient medication adherence was assessed using the Medication Level Variability Index (MLVI). Patients were dichotomized as experiencing a post-transplant medical complication (ie, transplant-related hospital admission prior to the year completing measures of PTSS) or no complications. RESULTS: Medication adherence was not significantly associated with patient or caregiver PTSS. A moderate effect size was found for elevated young adult and caregiver PTSS and the presence of a medical complication. Generally, the association between self-reported patient and caregiver PTSS was low. CONCLUSIONS: The presence of elevated PTSS in young adult patients may be partially explained by the presence of proximal medical complications and more so by comorbid psychiatric diagnoses in child and adolescent patients (based on exploratory analyses). Caregivers of patients with medical complications within the past year reported higher levels of PTSS. Overall, transplantation and its associated impact on PTSS may be unique experience for patients versus caregivers. Qualitative research may further elucidate these experiences and inform future clinical interventions.

Measurement of health-related quality of life in pediatric organ transplantation recipients: a systematic review of the PedsQL transplant module.

OBJECTIVE: To collect and assess the extant empirical literature assessing disease-specific health-related quality of life (HRQOL) in pediatric transplant recipients using the PedsQL 3.0 Transplant Module (PedsQL-TM) assessment. STUDY DESIGN: A systematic search and review procedure was conducted of research reporting use and results of the PedsQL-TM with samples of pediatric heart, liver, kidney, and lung transplantation. Searches were conducted in nine scholarly databases and two additional sources to identify unpublished research. Multiple reviewers screened studies meeting inclusion criteria in accordance with PRISMA guidelines. RESULTS: A final sample of nine studies reported findings for the PedsQL-TM with pediatric organ transplant recipients. Most studies relied on either kidney or liver transplant recipients from single pediatric transplant centers. Factor validity of the PedsQL-TM and inter-rater reliability (IRR) between patients and parents have not been adequately determined. Internal consistency reliability was found as acceptable or excellent across multiple studies. PedsQL-TM scores were found to vary with other HRQOL issues, yet few studies examined their association with medication adherence or posttransplant health outcomes. CONCLUSIONS: With the goal of enhancing and sustaining HRQOL in pediatric organ transplant recipients, the need for a psychometrically valid and reliable measure of transplant-specific HRQOL is apparent. Research on the PedsQL-TM supports the promise of this measure although future efforts should be taken to examine measurement issues such as factor validity and IRR. Assessing transplant-specific HRQOL in these patients is paramount for their care and appropriate decision-making by patients, families, and the transplant team.

Psychosocial predictors of medication non-adherence in pediatric organ transplantation: A systematic review.

Adherence to immunosuppressant medication is critical to health and quality-of-life outcomes for children who have received a solid organ transplant. Research on the psychological and social predictors of medication adherence is essential to the advancement of pretransplant assessments and transplant psychosocial services. Despite the importance of identifying risk factors, the literature remains limited regarding psychosocial predictors of non-adherence. A systematic search was conducted to identify studies of the psychosocial predictors of post-transplant medication non-adherence in pediatric solid organ transplantation. From 1363 studies identified in searches of empirical literature, a final sample consisted of 54 publications representing 49 unique studies. Findings regarding psychosocial predictors were inconsistent with non-adherence associated largely with adolescence, racial/ethnic minority status, and presence of mental health issues. Familial predictors of non-adherence problems included single-parent households, lower socioeconomic status, lower family cohesion, presence of family conflict, and poor family communication. Several studies reported an association between non-adherence and social pressures (eg, peer social interaction, wanting to feel normal) among adolescent transplant recipients. While significant methodological and substantive gaps remain in this body of knowledge, this review synthesizes current evidence for assessment for transplant clinicians and researchers.

Diabetes Camp Counselors: An Exploration of Counselor Characteristics and Quality of Life Outcomes.

Purpose The purpose of this study is to investigate the effect of volunteering at a diabetes camp on emerging adults with and without type 1 diabetes mellitus (T1DM). Methods Thirty counselors with and 22 without T1DM (19.07 ± 2.71 years old) volunteered at a 1-week T1DM camp in the northeastern United States. Counselors with T1DM had a range of self-reported A1C scores (5.8% or 39.9 mmol/mol to 14.0% or 129.5 mmol/mol). Self-report measures of quality of life, hope, and well-being were completed pre- and postcamp at 4 time points: 1 month before camp, arrival at camp, final day of camp, and 2 months postcamp. Open-ended questions regarding counselor experiences were analyzed to understand camp effect. Results There were significant differences between counselors' levels of trait hope in comparison to published norms. There were few clear differences in psychosocial outcomes pre- and postcamp; however, some increases in well-being were revealed in anticipation of camp. Major reasons for volunteering included assisting others and reciprocating or continuing a perceived positive experience as a camper. Conclusion No changes in psychosocial outcomes pre- to postcamp were observed. However, measures used in this study may be poorly defined for a counselor population. Further research on the characteristics of emerging adults who choose to be camp counselors is needed. By understanding the demographics of this population, health professionals can help target individuals to become camp counselors as well as enhance the camp experience to fit their developmental needs.

Application of well-being therapy to people with disability and chronic illness.

PURPOSE/OBJECTIVE: Research data clearly indicate most people living with a disability return to premorbid levels of psychological functioning. However, some individuals living with a disability are vulnerable for the development of psychological disorders including depression, anxiety, and posttraumatic stress disorder. Rather than understanding this phenomenon of vulnerability solely as the presence of psychopathology, it can be understood from a positive psychology standpoint as a deficit of well-being. We extend this approach by demonstrating the links between the historic foundational principles of rehabilitation psychology and the relevant current research on psychology of well-being. The article then explores the implications of providing meaningful interventions that could improve the lives of persons living with disability and chronic illness. RESULTS: Based on this view, well-being therapy is proposed as an intervention because it has proven efficacy in acting as a buffer against the development of some negative affective states. The assumptions and dimensions underlying this approach are shown to be relevant to both persons living with disability and to the foundational principles of rehabilitation psychology. A model for assisting people with disability in improving their well-being and decreasing negative aspects of their life by balancing factors relevant to well-being is discussed. CONCLUSIONS/IMPLICATIONS: The authors conclude by exploring the benefits of engendering positive well-being versus the traditional focus on solely alleviating negative affective states.