<p><strong>OBJECTIVE: </strong>We aimed to develop a model of the illness experience for youth with systemic lupus erythematosus (SLE)/mixed connective tissue disease (MCTD).</p>

<p><strong>METHODS: </strong>We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, age 11 to 22 years, and their parents. We qualitatively defined key features of illness for families and distinguished profiles of youth adapting well vs poorly to SLE/MCTD. We then related these profiles to features of illness, patient-level attributes and outcomes.</p>

<p><strong>RESULTS: </strong>Experiences with SLE/MCTD grouped into five themes: managing disease, limitations, stigma, illness uncertainty and psychological coping. Youth adapting well experienced minimal challenges in these areas. Youth adapting poorly (4/16) experienced significant challenges in &gt;1 thematic area, and were older with lower socioeconomic status, quality of life and psychosocial functioning, and increased disease-related morbidity. They also described suboptimal treatment adherence, healthcare utilization and transition to adult care. These findings support a dynamic model in which illness adaptation and outcomes are shaped by patient characteristics and five central illness-related challenges.</p>

<p><strong>CONCLUSION: </strong>Further testing of our model of illness experience may help guide comprehensive and personalized care of youth with SLE/MCTD, with targeted supports for youth at risk for negative adaptation to illness and poor outcomes.</p>

<p><strong>OBJECTIVE: </strong>To describe influences on shared decision making (SDM) between primary care pediatricians and parents of young children with autism spectrum disorder (ASD).</p>

<p><strong>METHODS: </strong>We conducted a qualitative study using key informant interviews with 20 pediatricians of varying experience from 10 primary care practices and 20 English speaking parents of young children (ages 2-5 years) with a parent reported diagnosis of ASD. Subjects were recruited through purposive sampling. Interviews were audio taped, transcribed verbatim and analyzed using an integrated approach to data analysis. Differences in coding were resolved by consensus. We achieved thematic saturation and ceased recruitment after 20 interviews were completed within each group.</p>

<p><strong>RESULTS: </strong>Three primary themes emerged: 1) pediatricians and parents reported knowledge gaps by pediatricians about ASD treatments and community resources and ambiguity regarding the pediatrician's role in ASD care; 2) there was little communication between parents and pediatricians about treatment choices; 3) use of CAM treatments created conflict between pediatricians and parents and, as a result, parents may independently pursue treatments, without benefit of discussing safety and efficacy with pediatricians. Despite these barriers, parents desired increased support and guidance from their pediatricians, including for CAM.</p>

<p><strong>CONCLUSIONS: </strong>Much work is needed to effectively foster SDM in the context of ASD treatment decisions in primary care, including pediatrician training in ASD to enhance knowledge about evidence-based and novel treatments, clinical practice guidelines and community resources.</p>

<p>The objective of this study was to document barriers to care, help-seeking behaviors, and the impact of a community-based patient navigation intervention on patient activation levels among Bhutanese refugees in the U.S. Data sources comprised 35 intake and 34 post-intervention interviews with program participants, 14 intake and 14 post-intervention interviews with patient navigators, and 164 case notes. Textual data were analyzed using the constant comparison method. Patient activation level was assessed at both time points. Participants had limited English proficiency (97&nbsp;%), limited literacy (69&nbsp;%), and the lowest level of patient activation (69&nbsp;%). Participants routinely experienced complex insurance access, coverage, and payment problems and had limited healthcare-related life skills. Help-seeking began within social networks, with high reliance on bilingual, literate family members perceived to have experience with "the system." Help-seeking was not stigmatized and was instead consistent with societal norms valuing mutual assistance. Participants preferred helpers to act as proxies and required repeated social modeling by peers to gain confidence applying healthcare-related life skills. Following the intervention, only one-third reported the lowest level of patient activation (35&nbsp;%) and one-third were highly activated (32&nbsp;%). Bhutanese refugees overcome healthcare access barriers by seeking help from a network of support that begins within the community. Community health workers serving as patient navigators are readily sought out, and this approach is concordant with cultural expectations for mutual assistance. Community health workers serving immigrant groups should model healthcare-related life skills in addition to providing direct assistance.</p>

<p><strong>BACKGROUND: </strong>Untreated mental health problems may result in poor outcomes for youth with systemic lupus erythematosus (SLE) and mixed connective tissue disease (MCTD). We investigated perceptions, barriers and facilitators for mental healthcare of these youth.</p>

<p><strong>METHODS: </strong>We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, ages 11-22 years, and their parents. We used purposive sampling to deliberately obtain the experiences of youth screened during a previous study for depression and anxiety with the Patient Health Questionnaire 9 and the Screen for Childhood Anxiety and Related Disorders, respectively. We recruited 6 youth with previous positive screens and 10 with negative screens. We assessed interim mental health history, and qualitatively examined perceptions, barriers and facilitators for mental healthcare.</p>

<p><strong>RESULTS: </strong>Youth with a mental health history increased from 6 (38&nbsp;%) at initial screening to 9 (56&nbsp;%) at interview (mean follow-up = 2.1&nbsp;years). Youth receiving mental health treatment increased from 33 to 67&nbsp;%. Youth and parents identified rheumatologists as primary physicians and found mental health screening in rheumatology acceptable. Barriers to mental healthcare included: stigma; fear; uncertainty about getting help; parental emotional burden; minimization by doctors; and limited mental healthcare access. Facilitators included: strong clinician relationships; clinician initiative, sincerity and normalization in discussing mental health; and increased patient/family awareness of mental health issues in SLE/MCTD.</p>

<p><strong>CONCLUSION: </strong>Youth with SLE/MCTD and their parents perceive pediatric rheumatologists as a preferred source for mental health screening, guidance and referral. Interventions addressing barriers and enhancing facilitators may improve mental healthcare for youth with SLE/MCTD.</p>

<p><strong>OBJECTIVE: </strong>To explore barriers to early intervention (EI) evaluation among referred infants and toddlers.</p>

<p><strong>METHODS: </strong>We conducted semistructured interviews with parents of children referred for EI services and with EI staff. We purposively sampled families according to whether they received an EI evaluation. Families were recruited from a randomized controlled trial testing implementation of developmental screening. Parents filled out demographic surveys. Interviews were recorded, transcribed, and coded. We identified themes within and across respondent groups using modified grounded theory.</p>

<p><strong>RESULTS: </strong>We reached thematic saturation after interviewing 22 parents whose child was evaluated by EI, 22 not evaluated, and 14 EI employees. Mean child age at first referral was 16.7 months, and 80% were referred as the result of language concerns. We identified 5 primary themes: (1) Parents reported communication problems with their pediatrician, including misinterpreting reassurance and not understanding the referral process; (2) Many parents saw themselves as experts on their child's development and felt they should decide whether their child pursues EI services; (3) Some families preferred to wait for the developmental concern to resolve or work with their child on their own prior to seeking EI services; (4) For ambivalent parents, practical obstacles especially limited completion of evaluation, but highly motivated parents overcame obstacles; and (5) EI employees perceived that families avoid evaluation because they mistake EI for child protective services.</p>

<p><strong>CONCLUSIONS: </strong>Communication between pediatricians and families that addresses practical logistics, families' perceptions of their child's development and EI, and motivation to address developmental concerns may improve the completion of EI referrals.</p>

<p><strong>BACKGROUND: </strong>Rapid response systems (RRSs) aim to identify and rescue hospitalized patients whose condition is deteriorating before respiratory or cardiac arrest occurs. Previous studies of RRS implementation have shown variable effectiveness, which may be attributable in part to barriers preventing staff from activating the system.</p>

<p><strong>OBJECTIVE: </strong>To proactively identify barriers to calling for urgent assistance that exist despite recent implementation of a comprehensive RRS in a children's hospital.</p>

<p><strong>METHODS: </strong>Qualitative study using open-ended, semistructured interviews of 27 nurses and 30 physicians caring for patients in general medical and surgical care areas.</p>

<p><strong>RESULTS: </strong>The following themes emerged: (1) Self-efficacy in recognizing deteriorating conditions and activating the medical emergency team (MET) were considered strong determinants of whether care would be appropriately escalated for children in a deteriorating condition. (2) Intraprofessional and interprofessional hierarchies were sometimes challenging to navigate and led to delays in care for patients whose condition was deteriorating. (3) Expectations of adverse interpersonal or clinical outcomes from MET activations and intensive care unit transfers could strongly shape escalation-of-care behavior (eg, reluctance among subspecialty attending physicians to transfer patients to the intensive care unit for fear of inappropriate management).</p>

<p><strong>CONCLUSIONS: </strong>The results of this study provide an in-depth description of the barriers that may limit RRS effectiveness. By recognizing and addressing these barriers, hospital leaders may be able to improve the RRS safety culture and thus enhance the impact of the RRS on rates of cardiac arrest, respiratory arrest, and mortality outside the intensive care unit.</p>

<p><strong>OBJECTIVE: </strong>To compare parents' experience with the early intervention (EI) referral process based on health literacy level.</p>

<p><strong>METHODS: </strong>We interviewed 44 parents of children referred to EI by their pediatricians. Parents completed the Newest Vital Sign (NVS) health literacy assessment. We analyzed transcripts using modified grounded theory and compared themes based on health literacy.</p>

<p><strong>RESULTS: </strong>Forty parents completed the NVS. Twenty-eight (70%) had adequate health literacy. Four primary themes differed between parents based on health literacy level. Parents with low health literacy commonly reported that: (1) they lacked continuity with a single pediatrician, (2) they had difficulty contacting EI, (3) they were confused about EI or the referral process (4) their pediatricians did not explain EI and written materials were not helpful.</p>

<p><strong>CONCLUSION: </strong>Parents with low health literacy commonly reported difficulty with EI referrals including contact problems and confusion. Strategies that accommodate parents with low health literacy level may improve referral success.</p>

<p><strong>BACKGROUND: </strong>Early warning scores (EWSs) assign points to clinical observations and generate scores to help clinicians identify deteriorating patients. Despite marginal predictive accuracy in retrospective datasets and a paucity of studies prospectively evaluating their clinical effectiveness, pediatric EWSs are commonly used.</p>

<p><strong>OBJECTIVE: </strong>To identify mechanisms beyond their statistical ability to predict deterioration by which physicians and nurses use EWSs to support their decision making.</p>

<p><strong>DESIGN: </strong>Qualitative study.</p>

<p><strong>SETTING: </strong>A children's hospital with a rapid response system.</p>

<p><strong>PARTICIPANTS: </strong>Physicians and nurses who recently cared for patients with false-positive and false-negative EWSs (score failures).</p>

<p><strong>INTERVENTION: </strong>Semistructured interviews.</p>

<p><strong>MEASUREMENTS: </strong>Themes identified through grounded theory analysis.</p>

<p><strong>RESULTS: </strong>Four themes emerged among the 57 subjects interviewed: (1) The EWS facilitates safety by alerting physicians and nurses to concerning changes and prompting them to think critically about deterioration. (2) The EWS provides less-experienced nurses with vital sign reference ranges. (3) The EWS serves as evidence that empowers nurses to overcome barriers to escalating care. (4) In stable patients, those with baseline abnormal physiology, and those experiencing neurologic deterioration, the EWS may not be helpful.</p>

<p><strong>CONCLUSIONS: </strong>Although pediatric EWSs have marginal performance when applied to datasets, clinicians who recently experienced score failures still considered them valuable to identify deterioration and transcend hierarchical barriers. Combining an EWS with a clinician's judgment may result in a system better equipped to respond to deterioration than retrospective data analyses alone would suggest. Future research should seek to evaluate the clinical effectiveness of EWSs in real-world settings.</p>

<p><strong>OBJECTIVE: </strong>The goal was to compare how parents and clinicians understand shared decision-making (SDM) in attention-deficit/hyperactivity disorder (ADHD), a prototype for SDM in pediatrics.</p>

<p><strong>METHODS: </strong>We conducted semi-structured interviews with 60 parents of children 6 to 12 years of age with ADHD (50% black and 43% college educated) and 30 primary care clinicians with varying experience. Open-ended interviews explored how pediatric clinicians and parents understood SDM in ADHD. Interviews were taped, transcribed, and then coded. Data were analyzed by using a modified grounded theory approach.</p>

<p><strong>RESULTS: </strong>Parents and clinicians both viewed SDM favorably. However, parents described SDM as a partnership between equals, with physicians providing medical expertise and the family contributing in-depth knowledge of the child. In contrast, clinicians understood SDM as a means to encourage families to accept clinicians' preferred treatment. These findings affected care because parents mistrusted clinicians whose presentation they perceived as biased. Both groups discussed how real-world barriers limit the consideration of evidence-based options, and they emphasized the importance of engaging professionals, family members, and/or friends in SDM. Although primary themes did not differ according to race, white parents more commonly received support from medical professionals in their social networks.</p>

<p><strong>CONCLUSIONS: </strong>Despite national guidelines prioritizing SDM in ADHD, challenges to implementing the process persist. Results suggest that, to support SDM in ADHD, modifications are needed at the practice and policy levels, including clinician training, incorporation of decision aids and improved strategies to facilitate communication, and efforts to ensure that evidence-based treatment is accessible.</p>