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.

Parents Reliably Identify Pain Dismissal by Pediatric Providers.

OBJECTIVES: Approximately 40% of children and adolescents with chronic pain report at least 1 dismissal experience, citing medical providers and parents as the primary and most distressing dismissers. Previous research indicates sex differences in pain dismissal experience and observer pain perception. This study examined parental reactions to dismissive provider-child scenarios and the influence of provider and patient sex on perceptions. METHODS: Community parents (N=326) completed an online survey. Parents were randomized to listen to 1 of 8 vignettes of a provider-child chronic pain scenario. Vignettes varied by type of scenario (appropriate vs. dismissive)×provider sex×patient sex. RESULTS: Overall, parents rated the dismissive scenario more negatively. There was a significant interaction between provider sex and scenario regarding likelihood to bring their own child to this provider and a significant 3-way interaction regarding provider belief of the pain complaint. When asked how they would feel if this was their own child, parents who heard the dismissive scenario reported more negative reactions. When asked what they would say to the provider, parents in the dismissive condition were more likely to defend their child and request a second opinion. DISCUSSION: Parents consistently identified the dismissive language in a child and provider scenario. Female providers and sex-matched dyads seem to be more polarizing in terms of likelihood to bring their child to the provider and belief of pain, respectively. Providers within these groups may need to be especially cautious with their language when responding to pediatric chronic pain complaints.

Development and Initial Validation of the Communication About Medication by Providers-Parent Scale (CAMP-P).

This study evaluated the psychometric properties of the Communication about Medication by Providers-Parent Scale (CAMP-P), a 24-item measure of communication relevant to medication adherence between parents and medical providers. Parents of youth (ages 2-7 years) who had received a prescription within the last 12 months completed online surveys regarding demographic and appointment variables, and child's recent prescription medications, and they completed the newly developed CAMP-P. Exploratory factor analysis of CAMP-P identified 20 items about provider communication corresponding to 3 distinct scales: medication administration strategies, encouraging communication, and addressing barriers to medication taking. Factor scales were related to appointment variables, such as length of time spent discussing medications. The CAMP-P demonstrated good internal consistency and convergent and divergent validity. The CAMP-P is a novel, validated measure of parent perceptions of medication communication and can be utilized to evaluate parent-provider communication on pediatric medication adherence in clinical and research settings.

Decision-making, knowledge, and psychosocial outcomes in pediatric siblings identified to donate hematopoietic stem cells.

PURPOSE: To (a) describe the decision-making experience and psychosocial outcome of sibling hematopoietic stem cell (HSC) donors, and (b) to determine the feasibility of completing a prospective and longitudinal assessment of HSC sibling donors at a single institution. DESIGN: A mixed-methods approach was utilized. SAMPLE AND METHODS: 12 potential siblings HSC donors aged 10-21 years completed various psychological measures and participated in semi-structured interviews at three time points in the donation experience: pre-donation, within 1 week after the harvest procedure, and six months post-donation. Caregivers also completed parent-proxy measures. FINDINGS: Qualitative analysis indicated donors want to make their own decision about donation but may not be given the option or may feel that there is no choice given their limited awareness of alternative options. Donors felt well prepared for the donation procedure but demonstrated a poor understanding of possible recipient outcomes. A minority of donors endorsed emotional distress prior to and after donation; however, this was not linked to recipient health. Forty percent of donors felt that they had inadequate support following their donation. Small sample size restricted quantitative data analysis. CONCLUSIONS AND IMPLICATIONS: Utilizing a donor advocate offers opportunity to work with donors to encourage decision-making tied to ideals rather obligation, increase education about possible recipient outcomes, and offer support at key times, such as when a recipient dies. Future research should include prospective multi-site studies.

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.

The Experience of Pain Dismissal in Adolescence.

CONTEXT: Pain in adolescence has psychosocial effects lasting into adulthood, including increased likelihood of pain in adulthood and higher rates of depression and anxiety. Many adolescents with chronic pain describe skepticism of pain reports, but this has not yet been evaluated in a sample of typically developing adolescents. OBJECTIVE: The current study sought to describe the experience of perceived pain dismissal during adolescence in a community sample. METHOD: Nearly 2000 (1931) emerging adults were recruited from the community and answered open-ended questions regarding whether they had experienced dismissal of their pain in adolescence, who dismissed their pain, characteristics of the dismisser, and what that experience was like. Qualitative responses were coded using a Delphi method. RESULTS: One in 10 young adults reported an experience of pain dismissal during adolescence. Young adults reported that dismissals by parents and physicians were the most distressing. Often, this experience was associated with a lasting sense of hostility toward the person who dismissed their pain, as well as anger, self-directed negativity, damage to the relationship, and feelings of isolation. CONCLUSIONS: One in 10 young adults reported at least one instance of dismissed pain and half of these instances involved a parent or medical provider. Results suggest a lasting negative impact of perceived dismissal. Pain in adolescence is a complicated experience and the current study indicates that parents and physicians need further guidance on how best to respond to reports of pain.

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.