Nataliya Zelikovsky

Perceived barriers to adherence among adolescent renal transplant candidates.

Abstract:  Non‐adherence to medical regimens is a ubiquitous hindrance to quality health care among adolescent transplant recipients. Identification of potentially modifiable barriers to adherence when patients are listed for organ transplant would help with early intervention efforts to prepare adolescents for the stringent medication regimen post‐transplant. Fifty‐six adolescents listed for a kidney transplant, mean age 14.27 (s.d. = 2.2; range 11–18 yr), 73.2% male, 62.5% Caucasian participated in a semi‐structured interview, the Medical Adherence Measure, to assesses the patient’s knowledge of the prescribed regimen, reported adherence (missed and late doses), the system used to organized medications, and who holds the primary responsibility over medication management. Better knowledge of the medication regimen was associated with fewer missed doses (r = −0.48, p < 0.001). Patients who perceived more barriers had more missed (r = 0.38, p = 0.004) and late (r = 0.47, p < 0.001) doses. Patients who endorsed “just forget,” the most common barrier (56.4%), reported significantly more missed (z = −4.25, p < 0.001) and late (z = −2.2, p = 0.02) doses. Only one‐third of the transplant candidates used a pillbox to organize medications but these patients had significantly better adherence, z = −2.2, p = 0.03. With regard to responsibility over managing the regimens, adolescents missed fewer doses when their parents were in charge than when they were solely responsible, z = −2.1, p = 0.04. Interventions developed to prepare transplant candidates for a stringent post‐transplant regimen need to focus on ensuring accurate knowledge of as simple a regimen as possible. Use of an organized system such as a pillbox to establish a routine and facilitate tracking of medications is recommended with integration of reminders that may be appealing for this age group. Although individuation is developmentally normative at this age, parent involvement seems critical until the adolescent is able to manage the responsibility more independently.

The experience of secondary traumatic stress upon care providers working within a children's hospital.

This study examined the impact of routine occupational exposure to traumatic aspects of child illness, injury, and medical treatment upon care providers working within a childrens hospital. Three hundred fourteen providers completed a demographic data sheet and four questionnaires. Results suggested overall that the level of Compassion Fatigue in this sample was similar to a trauma worker comparison group. In addition, 39% of the sample was at moderately to extremely high risk for Compassion Fatigue, and 21% was at moderate to high risk for Burnout. Burnout and Compassion Fatigue were related to type of profession and length of employment. Various dimensions of empathy were related to both Burnout and Compassion Fatigue. Regression analyses indicated that years in direct care and greater blurring of caregiver boundaries were predictive of greater Burnout and Compassion Fatigue. There is a need to further refine the assessment of occupational exposure to potential traumatic aspects of care within pediatric hospital settings and link assessment to prevention and intervention efforts.

The challenges of using medication event monitoring technology with pediatric transplant patients.

Abstract:  This study investigated the advantages and challenges of using Medication Electronic Monitoring System (MEMS) technology to examine adherence among pediatric kidney transplant patients. Twenty‐nine patients participated in the study, with a mean age of 14.03 yr (SD = 3.34, range 8–19 yr). Patients were given a MEMS bottle and cap to be used with their primary immunosuppressant medication over a three‐month period. Issues related to study eligibility, recruitment, and participant maintenance were recorded. Patients completed the Debriefing Form regarding their experiences with the MEMS. Many younger patients were on liquid medications affecting the feasibility of this technology across ages. Acceptance of this technology proved difficult, as many patients either declined upfront or dropped out because they did not want to use the MEMS. Of the final sample, 41% found transferring medication into the MEMS bottle difficult and 27.2% reported that the MEMS was a burden and/or difficult to transport. Another 22% of the patients reported that using the MEMS changed their routine, and 10.2% worried about missing their medications. Pediatric transplant centers should be cautious about solely relying on MEMS to examine adherence until more research is conducted on the feasibility, acceptance, and utility of this technology.

Parent Stress and Coping: Waiting for a Child to Receive a Kidney Transplant

The current study examined the degree of parent stress and depression among mothers and fathers of children with end-stage renal disease (ESRD) listed for a kidney transplant, to determine whether demographic factors, stress, and coping would predict parent depression. Eighty-six mothers and 58 fathers of children with ESRD preparing for a kidney transplant completed standardized measures of parent stress related to the child’s chronic illness (PIP), coping style (Brief Cope), and depression (BDI-II). Information about the disease was obtained from the medical record. Maternal depression was predicted by having a lower family income, higher degree of parent stress associated with the child’s illness, and the use of avoidant coping strategies. Paternal depression was only predicted by higher parent stress. Illness related variables did not contribute significantly to the understanding of parent outcomes. Pre-transplant evaluations should screen for elevated levels of stress and depression, and develop interventions to help parents cope with their child’s renal disease.

Physical Symptoms, Perceived Social Support, and Affect in Adolescents with Cancer

Treatment for cancer among adolescents is often more intense and lasts longer than treatment for older or younger patients. It typically causes pain, fatigue, and nausea and affects social and emotional well-being. This study examined the relationships among demographics, physical symptoms, perceived social support from friends and family, and affect (positive and negative) in 102 adolescents (age 13–19) with cancer using correlational analyses. Additionally, perceived social support was explored as a mediator and moderator of the relationship between physical symptoms and affect using regression. Females reported significantly lower friend support and higher negative affect compared to males. Minority participants were more likely to endorse physical symptoms and less negative affect compared to White respondents. Higher report of physical symptoms was significantly related to greater negative affect, whereas higher perceived social support from friends was related to higher positive affect. Adolescents consistently reported high levels of social support from family and friends. Additionally, adolescents tended to report average levels of positive affect and low levels of negative affect compared to healthy populations. No significant mediation or moderation effects were found. This research highlights that females and minorities, and those with greater physical symptoms, may be more vulnerable to poor adjustment to cancer during adolescence. However, overall this study lends support to the notion that adolescents with cancer are an especially resilient population, as these patients endorsed generally high levels of social support and positive affect, with low levels of negative affect.

Reducing Parent Distress and Increasing Parent Coping-Promoting Behavior During Children's Medical Procedure

The study investigated whether involving parents in their childs cognitive-behavioral intervention would effectively reduce parent distress during their childs medical procedure. Parents participating with their 3- to 7-year-old children prior to a voiding cystourethrogram were randomly assigned to an intervention (N = 20) or a standard care (N = 20) condition. The intervention included provision of information, coping skills training, and parent coaching. Parents participating in the intervention had a significant reduction in anxiety following the intervention relative to parents in standard care. Trained parents displayed fewer distress-promoting and more coping-promoting behaviors during the procedure, even though parents in both conditions reported similar levels of anxiety during the procedure. Involving parents in childrens interventions is crucial to reduce parent distress and prepare parents to assist their child during the medical procedure.

Childhood Psychological and Physical Abuse: Psychopathology, Dissociation, and Axis I Diagnosis

ABSTRACT The present study compared (1) college students who reported childhood physical and psychological abuse (combined; N = 35) with (2) students who reported psychological abuse alone (psychological; N = 30), and with (3) students who reported no history of childhood abuse (no abuse; N = 35). Combined abuse and psychological abuse participants were more likely to receive an Axis I diagnosis on a structured interview and to report more dissociative experiences than were no abuse participants. In addition, a structured interview for dissociative disorders was the single measure that differentiated psychologically abused participants from participants reporting combined abuse and no abuse. However, the most psychological impairment was evident in the combined abuse group. Relative to participants who reported no abuse history, combined abuse participants reported more dissociative symptoms on a structured interview and more symptoms of general psycho-pathology, depression, and state and trait anger on self-report measures.

Best practices in the pediatric pretransplant psychosocial evaluation

Assessment of psychosocial functioning is an often‐included component of the pretransplant evaluation process. This study reviews several domains of assessment that have been related to post‐transplant outcomes across solid organ transplant populations. These include evaluation of patient and family past adherence, knowledge about the transplantation process, and their neurocognitive, psychological, and family functioning. To date, few comprehensive pretransplant evaluation measures have been standardized for use with children; however, several assessment measures used to evaluate the aforementioned domains are reviewed throughout the study. Additionally, this article discusses some developmental, illness‐specific, and cultural considerations in conducting the psychosocial evaluation. We also discuss ethical issues specific to the pediatric psychosocial evaluation. Recommendations are advanced to promote a comprehensive evaluation that identifies family strengths and risk factors as they begin the transplant journey.

Post-transplant adjustment – The later years

As survival rates for pediatric solid organ transplantation have continued to improve, researchers and healthcare providers have increasingly focused on understanding and enhancing the HRQOL and psychosocial functioning of their patients. This manuscript reviews the psychosocial functioning of pediatric transplant recipients during the “later years,” defined as more than three yr post‐transplant, and focuses on the day‐to‐day impact of living with a transplant after the immediate period of adjustment and early years after surgery. Key topics reviewed include HRQOL, cognitive functioning, impact on the family, regimen adherence, and transition of responsibility for self‐management tasks. Overall, pediatric transplant recipients evidence impairment in HRQOL, neuropsychological outcomes, and family functioning as compared to non‐transplant recipients. However, the degree of impairment is influenced by a variety of factors including, disease severity, age, solid organ type, and study methodologies. Studies are limited by small samples, cross‐sectional design, and the lack of universal assessment battery to allow for comparisons across solid organ populations. Areas for future research are discussed.

Medication beliefs and perceived barriers in adolescent renal transplant patients and their parents

Understanding patient beliefs about medications and perceived barriers is important for optimal medical management. Differentiating adolescent views from parents’ perceptions would enhance care by increasing communication about regimens and reducing obstacles. This study explored beliefs about medications and perceived barriers among 40 adolescent kidney transplant patients and their parents. Younger adolescents reported greater concern about medication harmfulness (t(38) = 2.190, p < 0.05) and more barriers, particularly for practical problems including forgetfulness, organization, and coordination (t(38) = 2.049, p < 0.05). Fathers with a lower education reported their children having greater challenges with medications due to taste and size (t(37) = 2.933, p < 0.01). Families with incomes in the low and high levels expressed that their children need more medication reminders (F (2, 35) = 7.815, p < 0.005), and adolescents from lower-income families perceived medication to be more harmful (F (2, 36) = 3.815, p < 0.05). Adolescents expressed challenges with practical aspects of medication taking, whereas parents were more focused on medications being necessary for their health. Adolescent renal patients experience challenges to medication management that may differ from their parents, findings that can help tailor interventions to improve medication management.