BACKGROUND: Postoperative anal dilations (PAD) are the standard of care for patients after a posterior sagittal anorectoplasty (PSARP) for anorectal malformation (ARM) or a transanal pull-through (TP) procedure for Hirschsprung disease (HD). This study assessed the psychosocial impact of PAD among caregivers of children with ARM or HD, which may inform postoperative care strategies.
METHODS: Caregivers of patients with ARM and HD who underwent PSARP or TP within five years participated in the online survey. Questions included demographics, patient and caregiver experiences with PAD, and baseline psychosocial functioning. Quantitative results were reported descriptively, while qualitative responses were summarized as major themes.
RESULTS: The survey indicated a response rate of 26% caregivers, with most being female (91%) and biological mothers (85%). Patients were mostly male (65%), born with ARM (74%), and were five months old on average when PAD began. Caregivers reported that during PAD, children experienced distress (56%), pain (44%), and fear (41%), while a third noted no negative reactions. Over time, their child\'s ability to cope with PAD got easier (38%) or stayed the same (41%). Caregivers reported worry/anxiety (88%), guilt (71%), stress (62%), and frustration (35%), noting that additional coping strategies to manage the emotional and logistical challenges of daily PAD would be helpful.
CONCLUSIONS: Although PAD is necessary, it can be highly stressful for the patients and their caregivers. Key findings emphasized the need for additional coping strategies and highlighted the importance of integrating psychosocial support into the postoperative care regimen.

UNASSIGNED: Worsening rates of infant and maternal mortality in the United States serve as an urgent call for multi-modal intervention. Infant Well Child Visits (WCVs) provide an opportunity for prevention, however not all infants receive the recommended schedule of visits, with infants of low-income and Black families missing a higher portion of WCVs. Due to diverse experiences and needs of under-resourced communities throughout the United States, caregiver voice is essential when designing improvement efforts.
UNASSIGNED: Purposeful sampling and interviewing of 10 caregivers in Cincinnati, OH was performed by community peer researchers. Interview transcripts were evaluated by the research team, with identification of several important themes.
UNASSIGNED: Nine out of 10 caregivers self-identified as Black. All young children of the interviewed caregivers had Medicaid as their insurance provider. All interviews highlighted rich perspectives on caregiver hopes for their child, family, and selves. Establishing trust through empathy, shared decision making, and the nurturing of interpersonal patient-practitioner relationships is crucial for fostering a positive healthcare experience. Levels of mistrust was perceptibly high across several interviews, with lack of racial concordance between medical provider and family exacerbating the issue for some caregivers. Caregivers voiced a tendency to rely on family and community members for when to seek out health care for their children, and additionally cited racism and perceptions of being rushed or judged as barriers to seeking further care.
UNASSIGNED: This study emphasizes the importance of being community-informed when considering interventions. Prior research on the topic of missed WCV\'s often focused on material resource availability and limitations. While that was commented on by caregivers in this study as well, equal-if not more-attention was directed toward interpersonal relationship formation, the presence or absence of trust between practitioner and caregiver, and the importance of social-emotional support for caregivers. We highlight several opportunities for systemic improvements as well as future directions for research.

BACKGROUND: Caregivers of children with autism face significant challenges in navigating health, education and other systems of care to ensure appropriate services for their children. In South Africa, for example, many children with autism are reported to be out of schools and waiting long periods for specialist school placements thus adding to the burden of care for caregivers and raising many questions about equity, diversity and inclusion.
METHODS: Here we performed a qualitative study using focus groups to collect data on the perspectives of caregivers of children with autism waiting for school placement in the Western Cape Province of South Africa. We asked families about their experiences of current autism services and for suggestions to improve service delivery.
RESULTS: The main theme that emerged was \'We wait and we wait\'. Caregivers expressed high levels of frustration with existing autism educational and other services. Perspectives about services were captured under three categories. The first category, \'The costs of waiting\' describes the socioemotional, financial and time costs associated with having a child with autism wait for educational services. The second category \'Barriers while waiting\' describes the attitudinal, structural, process and communication barriers experienced by caregivers while seeking services for their children. The final category \'Expecting action\' describes attitudinal, service and policy expectations that caregivers felt could improve service delivery. Caregivers provided 10 recommendations for autism service improvements.
CONCLUSIONS: Caregivers of children with autism waiting for educational services in the Western Cape Province of South Africa expressed dissatisfaction with existing services. Efforts to find solutions to providing services and support to children with autism waiting for educational services and their caregivers should be prioritized.

This project documents the service outcomes that caregivers value most. A diverse group of caregivers, representing six regions of the United States, participated in two rounds of virtual one-hour focus groups. In round 1, participants identified what they hoped to gain from using behavioral health services for themselves, their families, and their child and discussed what made services a positive experience for them. They then reported their top-three most-hoped-for outcomes. In round 2, groups validated and refined summary findings from round 1. Caregivers prioritized service quality outcomes, primarily. They expressed a desire for an accessible, respectful, and supportive treatment environment, underpinned by well-trained and culturally responsive professionals. Caregivers also desire seamless cross-sector provider collaboration and care transitions, which integrate the insights and preferences of families and children themselves to craft a customized care plan. Priority outcomes not related to service quality included hoping to gain increased knowledge, resources, and tools and techniques to support the mental health needs of their children, to see their children improve their daily functioning and for their child develop more effective interpersonal communication skills. Caregivers also reported hoping to experience less stigma related to the mental health needs of their children and to achieve personal fulfillment for themselves and their children. Research, policies, and mental health services should prioritize and be designed to address the outcomes that matter to youth and families.

OBJECTIVE: Missed infant well-child visits (WCV) result in lost opportunities for critical preventive care. Black infants consistently receive less WCV care than other racial groups. We sought to understand barriers and facilitators to timely infant WCV for Black families in the context of COVID-19.
METHODS: We conducted 21 semi-structured interviews with caregivers of Medicaid-insured Black children aged 15- to 24-months who attended six or fewer of eight recommended well-child visits within the first 15 months of life. Interviews focused on WCV value, barriers, and facilitators. After developing our initial coding structure through rapid qualitative analysis, we inductively derived the final codebook and themes through line-by-line content analysis.
RESULTS: Caregivers attended a mean of 3.53 of eight infant visits. Structural (e.g., transportation) and psychological (e.g., maternal depression) barriers delayed Black infant WCV. Families most frequently valued monitoring development and addressing concerns. Caregivers perceived visits as less urgent when infants seemed healthy or more recently avoided visits due to fears around COVID-19. Long waits and feeling rushed/dismissed were linked to WCV delays; positive provider relationships encouraged WCV attendance. Most caregivers reported reluctance to vaccinate. Vaccine hesitancy contributed to delayed infant WCV.
CONCLUSIONS: Caregivers described several factors that impacted WCV attendance for Black infants. Persistent structural and psychological barriers are compounded by perceptions that caregiver time is not respected and by notable vaccine hesitancy. To address these barriers, well-care can meet Black families in their communities, better address caregiver wellbeing, more efficiently use caregiver and provider time, and cultivate partnerships with Black caregivers.

Despite melatonin\'s popularity as a pediatric sleep-aid, little has been investigated around caregivers\' understanding and perception of melatonin use for their dependent. This scoping review analyzes the current literature on pediatric melatonin use, to understand how caregivers\' perceptions around melatonin are shaped by their illness/medication-related beliefs, treatment experience and preferences. A literature search was conducted across Embase, Medline, PsycINFO, PubMed and Scopus, generating 184 results for screening against the inclusion criteria. Nineteen studies were retrieved, comprising of 1561 children and adolescents, aged 8.7 ± 2.3 years (range: 0-44 years), conducted primarily in the United States of America (n = 6), Canada (n = 3) and the Netherlands (n = 3). Studies were evaluated for their study design and caregiver-centered outcomes, encompassing: 1) illness/treatment-related beliefs, 2) treatment satisfaction/effectiveness, 3) treatment preference/acceptability, and 4) impact of child\'s sleep disturbance on caregivers\' quality-of-life. Sleep disturbances necessitating melatonin use occurred alongside congenital/neurodevelopmental comorbidities in 18 studies (95%). Melatonin was commonly associated with \"naturalness\" and \"safety\". Concepts of treatment satisfaction versus effectiveness were minimally differentiated within included studies. Caregivers preferred concurrent use of melatonin and behavioral interventions for management of their dependents\' sleep. Improved sleep in the dependent generally led to better quality-of-life for caregivers and their family.

BACKGROUND: There is a critical need for the development of improved outcome measures in Fragile X Syndrome (FXS). Because the majority of respondents of behavior outcome measures are caregivers or individuals with FXS, it is important to consider stakeholders\' firsthand experiences when designing a caregiver- or self-report measure.
OBJECTIVE: The current research study aimed to understand experiences of completing commonly used caregiver-/self-report measures of behavior in FXS via focus groups.
METHODS: This study employed a focus group methodology. Semi-structured focus groups were conducted with 22 caregivers and 3 self-advocates. All interviews occurred via secured videoconferencing. A thematic analysis was used to identify major themes and subthemes.
RESULTS: We identified four themes: (1) content of measure, (2) structure of the measure, (3) potential accommodations to complete measure, and (4) impact of measure on family. Importantly, focus groups revealed that certain aspects of content, structure, and implementation of the available measures were related to distress and negative emotions of caregivers of FXS and individuals with FXS themselves.
CONCLUSIONS: The focus group data yielded a wide range of feedback and has significant implications, highlighting the critical need to take key stakeholder perspectives into account when using and/or developing caregiver- or self-report measures for FXS.

Evidence suggests that parenting an autistic child or a child with neurodevelopmental disabilities can be more challenging than parenting a child meeting their developmental milestones, especially when there is a dearth of support services, such as in low- and middle-income countries (LMICs). Despite the majority of the world\'s children residing in LMICs, there are limited studies examining the understanding of developmental disorders and autism in these regions. We therefore aim to investigate perceptions of autism and developmental disabilities in caregivers of children in an urban setting in New Delhi, India. Thirteen semi-structured interviews with parents/caregivers of children were conducted in three groups: (1) caregivers with a child with a diagnosis of autism spectrum disorder (ASD); (2) caregivers with a child with a diagnosis of intellectual disability (ID); (3) and caregivers with children meeting their developmental milestones. Transcripts were analysed using framework analysis. Three themes on the impact of cultural and contextual factors on the recognition, interpretation, and reporting of autistic symptoms are discussed, and additional themes focus on the impact of diagnosis and family support. Our findings highlighted a vital need for greater community awareness and recognition of autism in India, for example through community and healthcare training, which may help to reduce stigma and facilitate wider family support.

Disparities in diagnosis persist among persons living with dementia (PLWD); most research on delayed diagnosis relies on medical records or administrative claims. This study aimed to identify factors that delay or facilitate dementia diagnoses in racial or ethnic minoritized PLWD and elicit care partner perspectives on timing and effects of diagnosis.
Maryland-based participants cared for a PLWD age 60 or older, self-identified as Black/African/African-American, Asian, or Hispanic/Latino, and spoke English. Nineteen care partner in-depth, semi-structured interviews were conducted and analyzed using conventional qualitative content analysis methods.
Biological, sociocultural, and environmental factors delayed dementia diagnosis. Memory loss was the most common early symptom, but the onset was often subtle or perceived as normal aging. Stigma and secrecy surrounding dementia influenced recognition and discussion of dementia among families and communities. Diagnoses were family-initiated and started in primary care. Care partners were divided in their perceptions of diagnosis timeliness and whether earlier diagnosis would have changed outcomes. Family reactions to dementia diagnoses varied; most participants expressed a strong sentiment of service and duty to care for older family members. Participants overwhelmingly felt the benefits of obtaining a dementia diagnosis outweighed harms.
Numerous factors affect dementia diagnosis in racial and ethnic minoritized PLWD. Normalization of brain health discussions and systematic, proactive discussion and detection of dementia in primary care may address multilevel barriers and facilitators to diagnosis. Systems-level and community-led public health interventions may also help address disparities in brain health education and dementia diagnosis.

For Black children with sickle cell disease (SCD) and their families, high disease stigmatization and pervasive racism increase susceptibility to discrimination in healthcare settings. Childhood experiences of discrimination can result in medical nonadherence, mistrust of healthcare providers, and poorer health outcomes across the lifespan. Caregivers and medical providers are essential to childhood SCD management and are therefore well-positioned to provide insight into discrimination in the context of pediatric SCD. This mixed-methods study sought caregivers\' and providers\' perspectives on processes underlying discrimination and potential solutions to mitigate the negative effects of perceived discrimination among children with SCD. Caregivers (N = 27) of children with SCD (≤ 12 years old) and providers from their hematology clinics (N = 11) participated in individual semi-structured interviews exploring experiences of discrimination and daily SCD management and completed a quantitative measure of discrimination. Qualitative data were collected until themes reached saturation and subsequently transcribed verbatim, coded, and analyzed using applied thematic analysis. Quantitative and qualitative data converged to suggest the pervasiveness of discrimination in healthcare settings. Three qualitative themes emerged: (1) healthcare system factors underlie discrimination, (2) families\' challenging interactions with providers lead to perceptions of discrimination, and (3) experiences of discrimination impact caregiver-provider interactions. Both caregivers and providers highlighted building trusting patient-provider relationships and encouraging patients\' self-advocacy as means to reduce experiences and impacts of discrimination. These findings offer potential approaches to tangibly mitigate occurrences of discrimination in pediatric healthcare settings by trust building, accountability keeping, and fostering rapport to improve quality of care and pediatric SCD health outcomes.