Friends' Perspective: Young Adults' Reaction to Disclosure of Chronic Illness.

Chronic illness can negatively impact adolescents' and young adults' social support. Social support can buffer the negative impact of living with chronic illness. The purpose of this study was to test the acceptability of a hypothetical message to promote social support after a recent diagnosis of a chronic illness. Young adults (18-24; m = 21.30; N = 370), the majority of which were Caucasian, college-students, and female, were asked to read one of four vignettes and to imagine this situation happened while they were in high school. Each vignette contained a hypothetical message from a friend diagnosed with a chronic illness (cancer, traumatic brain injury, depression, or eating disorder). Participants answered forced-choice and free-response questions asking about the likelihood they would contact or visit the friend, and feelings about receiving the message. A general linear model was used to assess quantitative results, and qualitative responses were coded using the Delphi coding method. Participants responded positively, reporting a high likelihood to contact the friend, and feeling glad to receive the message regardless of vignette viewed; however, those who read the eating disorder vignette were significantly more likely to express discomfort. In qualitative responses, participants described positive emotions associated with the message and desire to support the friend. However, participants reported significantly greater discomfort with the eating disorder vignette. The results provide evidence for the potential of a short, standardized disclosure message to promote social support following chronic illness diagnosis with some additional considerations for those recently diagnosed with an eating disorder.

Parent-reported toilet training practices and the role of pediatric primary care providers.

BACKGROUND: Toilet training is a universal developmental milestone and a stressful period for families with few empirically based guidelines. PURPOSE: This study identified currently used methods of toilet training and sources used for parental guidance. METHODOLOGICAL ORIENTATION: A descriptive, qualitative design was used. SAMPLE: Participants included 479 parents of children aged 2-6 years. CONCLUSIONS: Parents described diverse toilet training strategies, most of which were behavioral and inconsistent with recommendations of the American Academy of Pediatrics. Most children were toilet trained between 24 and 36 months within 5 weeks. Forty-one percent of parents relied on the Internet for toilet training information, and fewer than half reported involvement of their child's primary care provider. IMPLICATIONS FOR PRACTICE: Parents in the community would likely benefit from additional education and anticipatory guidance from primary care providers about normative toilet training. Further work is needed to understand the effectiveness of different methods of training and improve adherence to AAP recommendations.

Friendship changes following a friend's school absence after serious illness or injury.

Social support is vital in helping adolescents cope following a serious illness or injury, though it is not known how their healthy peers react to potential changes in the nature of their friendships during this time. In this questionnaire-based study, emerging adults in the community indicated whether they had an experience with a friend's serious illness during adolescence and responded to structured and open-ended questions about their experience. Participants reported diminished contact with friends following diagnosis, such as decreased frequency of visits and communication. Participants most commonly cited logistical issues, such as transportation, and their friend's emotional and/or physical functioning as barriers to staying connected. Friends reported a mixture of positive and negative experiences associated with a friend's illness. The communication barriers highlighted provide a potential focus for intervention. Results suggest positive communication promotion with healthy friends may be an important path to enhance social support after a serious illness diagnosis or injury.

Assessment of end-of-treatment transition needs for pediatric cancer and hematopoietic stem cell transplant patients and their families.

BACKGROUND/OBJECTIVES: The transition off active treatment is a time of significant stress for pediatric cancer patients and families. Providing information and support at this time is among the new psychosocial standards of care in pediatric oncology. This study sought to explore patient and family needs and concerns at the end of their active cancer treatment. DESIGN/METHODS: Forty-nine caregiver-child dyads completed semi-structured interviews and surveys 1-2 months before ending treatment, and again 3-7 months after treatment concluded. RESULTS: Patients and caregivers reported a moderate level of understanding of follow-up care needs, late effects, and perceived preparation. Altogether, child, adolescent, and young adult cancer patients and parents identified similar priorities for information needed during the transition off active treatment. The most essential pieces of information desired by patients and families across time points included reviews of late effects, schedules for follow-up care, health and physical restrictions, communication with the patient's primary care provider, and provision of a treatment summary. At Time 2, patients and families reported a greater retrospective desire for emotional health resources. Most patients and caregivers wanted information from a variety of sources, but the desired timing to receive this information varied and was dependent on disease group. CONCLUSIONS: There are many essential components to end-of-treatment care that are not consistently provided to pediatric cancer patients and families. Formalized programs offering education and support should be provided by multidisciplinary teams prior to the end of active treatment.

Evaluating Differential Effects of Specific Pain Dismissal Interactions With Physicians.

OBJECTIVES: Over 40% of adolescents with chronic pain report experiencing pain dismissal, which is a response from another individual that is perceived as diminishing, denying, or disbelieving an individual's report of pain. Pain dismissal by physicians often leaves patients feeling discredited, which may discourage them from seeking and receiving proper treatment for their pain. The purpose of this study was to investigate how the 4 most commonly reported types of physician pain dismissal differentially affect individuals' reactions. MATERIALS AND METHODS: Emerging adults, age 18- to 25-years old (N=352, 60% female), were randomly assigned to read 1 of 4 vignettes describing patient-provider interactions that included the most commonly reported types of pain dismissal identified by previous research: denial/disbelief, minimizing, faking for secondary gain, and psychogenic. Participants answered questions regarding their reactions to the pain dismissal vignettes. RESULTS: All 4 vignettes were perceived as dismissive and problematic by the majority of participants, but participants who read the psychogenic pain dismissal vignette were less dissatisfied overall with the hypothetical medical appointment than participants who read the other 3 vignettes. DISCUSSION: All 4 types of physician pain dismissal were broadly perceived negatively, suggesting that the experience of pain dismissal is likely not due to patient hypersensitivity but to physician behavior. Discussion of the psychological factors associated with pain was less likely to be perceived as dismissive. Psychologists and physicians should collaborate to develop recommended language that validates patients' experiences of pain, communicates appropriate levels of empathy, and reduces the frequency of perceived physician pain dismissal.

Gender differences in the experience of pain dismissal in adolescence.

This study examined physician-generated pain dismissal experiences in adolescence between males and females. Young adults (ages 18-24, N = 178) with chronic or recurrent pain reported at least one pain dismissal experience in adolescence and answered a series of questions regarding the experience during this time period. Females were significantly more likely to report pain dismissal and a physician as the dismisser. Males were more likely to report that the dismisser expressed hostility toward them, feeling ambivalent regarding the dismissal experience, and a desire to avoid the dismisser. Females were more likely to report a desire to plead for understanding with the dismisser. Results suggest that female adolescents are more likely to report a pain dismissal experience with physicians, raising concerns that adolescent females may receive, or at least perceive, differential treatment for their chronic pain.

Patient-reported neuropathic pain in adolescent and young adult cancer patients.

BACKGROUND: Neuropathic pain, a known complication of cancer and its treatments, negatively impacts quality of life. There are limited data using screening tools to aid in the diagnosis of neuropathic pain in cancer patients. Our primary objective was to determine the proportion of adolescent and young adult cancer patients reporting neuropathic pain on a patient-completed, neuropathic pain screening tool. PROCEDURES: This prospective, cohort study enrolled patients 14-39 years of age who were receiving therapy for primary cancer diagnosis, cancer relapse, or had recently completed treatment. The painDETECT, a patient-completed, neuropathic pain screening tool used down to age 14, was administered a maximum of three times in on-therapy patients and once in off-therapy patients. Provider documentation of neuropathic pain at the corresponding visit was abstracted from the medical record. RESULTS: Seventy-eight patients participated. Median (interquartile range) age at study enrollment was 18.1 (16-19.4) years and 47% were female. Cancer diagnoses included 41% leukemia, 26% solid tumor, 23% lymphoma, and 10% central nervous system tumor. The proportion of patients reporting neuropathic pain was 26% (95% confidence interval [CI] 16-40%) in on-therapy patients and 11% (95% CI 3-27%) in off-therapy patients. In patients reporting neuropathic pain, only 26% had a clinical diagnosis of neuropathic pain documented in the medical record at the corresponding visit. CONCLUSIONS: Neuropathic pain occurs in one in four adolescents and young adults receiving cancer therapy. Use of screening tools may increase the detection of neuropathic pain in adolescents and young adults receiving cancer therapy and could ultimately improve pain treatment.