No one really plans to have multiple sclerosis: Transition readiness and quality of life in paediatric multiple sclerosis.

AIM: We sought to explore the experiences and perceptions of the quality of life of adolescents with pediatric-onset multiple sclerosis and assess their readiness for academic, employment and/or health care-related transitions. BACKGROUND: Adolescents with pediatric-onset multiple sclerosis face unique challenges in managing a chronic illness while navigating future scholastic, social and occupational goals. We conducted a qualitative study with in-depth, semi-structured interviews from July 2017 to March 2019. Adolescents with pediatric-onset multiple sclerosis were recruited from a pediatric neurology subspeciality practice until reaching data saturation. A total of 17 interviews were completed via telephone with participants ages 15 through 26. RESULTS: Through content analysis of the interviews, we identified five major themes: (1) receiving a new diagnosis; (2) adapting to life with pediatric-onset multiple sclerosis; (3) evaluating education/career transition preparedness; (4) adjusting within family life and establishing support systems; and (5) assessing current medical services and preparedness for adult medical care. CONCLUSIONS: Autonomy in health care management, adequate control of physical symptoms and sufficient family support impacted perceptions of quality of life. Implementing a dedicated transition visit, including the parent(s) of those with pediatric-onset multiple sclerosis, early in adolescence may provide an avenue for appropriate anticipatory guidance regarding available services, independent medical management and continuity of care.

Enhancing Reach Out and Read With a Video and Text Messages: A Randomized Trial in a Low-Income Predominantly Latino Sample.

OBJECTIVE: To determine the effect of adding a video and text messages to Reach Out and Read (ROR) on parent-reported literacy activities compared to the standard version. STUDY DESIGN: We conducted a mixed methods hybrid type I effectiveness-implementation randomized trial in a community health center that serves low-income Latino families. We assessed shared reading frequency and the StimQ Reading subscale, at enrollment and 6-month follow-up and the StimQ Parent Verbal Responsivity subscale, Parent Reading Belief Inventory, and Survey of Wellbeing of Young Children-Milestones at follow-up. We randomized 160 parent-child dyads to ROR or ROR plus video and text messages (enhanced ROR). We collected process data on ROR and engagement with texts. We interviewed 15 enhanced ROR participants. We analyzed quantitative data using regression and qualitative data using immersion/crystallization. RESULTS: One hundred thirty-seven parent-child dyads completed the study (87% Latino, mean child age 9 months). We found differences in the StimQ Reading subscale (B = 0.32; P = .034) and marginal differences in attitudes about reading favoring enhanced ROR. Between-group differences for shared reading frequency, verbal responsivity, and developmental delay were not significant. Qualitative themes provided insight into the enhanced ROR including how it encouraged parents, remaining barriers like competing priorities and lack of social support, and unanticipated benefits (ie, parent appreciation for attention on their families' wellbeing). CONCLUSIONS: A video and text message enhancement to ROR resulted in modest improvements in the home literacy environment over ROR alone. Additional strategies are needed to overcome potent barriers faced by low-income families.

Latino Parents' Experiences With Literacy Promotion in Primary Care: Facilitators and Barriers.

OBJECTIVE: Literacy promotion is a pediatric standard of care in which clinicians provide guidance on shared reading. Latino parents are more likely to hear advice to read with children but are less likely to do so. We sought to understand literacy promotion from the perspective of Latino parents and to identify facilitators and barriers. METHODS: We purposively sampled Latino parents who participated in Reach Out and Read (ROR) for a qualitative, semistructured interview study. We identified themes using immersion/crystallization and achieved thematic saturation after 21 interviews. RESULTS: Two thirds of participants had less than high school education; half of whom had not completed eighth grade. The mean child age was 16.4 months. Primary facilitators of engagement were advice from a pediatrician during a clinical encounter and receipt of the ROR book. Barriers identified included: 1) parents' perceptions that their children were not developmentally ready and that their children's behavior (eg, activity) indicated they were not interested in shared reading; 2) self-perceived limited literacy and/or English proficiency; 3) parenting demands occurring in the context of poverty; and 4) continued child media use despite advice from pediatricians to choose alternate activities such as shared reading instead. CONCLUSIONS: Parent-clinician relationships are central to ROR's impact but clinicians need to pay more attention to factors in a child's broader environment to strengthen literacy promotion. Specifically clinicians should emphasize skill building during the clinical encounter (eg, sharing knowledge about child development and modeling) and work collaboratively with other stakeholders to address poverty-related stressors.