Care Coordination Programs for Infants With Complex Conditions: A Systematic Review.

CONTEXT: Care coordination programs are becoming more widely available for children with complex conditions, yet we lack an understanding of programs available to infants and their benefits. OBJECTIVE: To summarize characteristics and outcomes associated with care coordination programs for infants with complex conditions. DATA SOURCES: Electronic search of Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and Web of Science databases for articles published from 2010 to 2021. STUDY SELECTION: Inclusion criteria consisted of (1) peer-reviewed manuscripts about a care coordination program, (2) infants (birth to 1 year) with complex medical conditions, (3) and reported at least 1 infant, parent, or healthcare utilization outcome. DATA EXTRACTION: Data were extracted on program characteristics and outcomes (eg, infant, parent, and healthcare utilization and cost). Results were summarized by program characteristics and outcomes. RESULTS: The search returned 3189 studies. Twelve unique care coordination programs were identified from 17 studies in the final sample. Seven programs were hospital-based and 5 were outpatient-based. Most programs reported improvements with satisfaction with care, increased interactions with healthcare teams, reductions in infant mortality, and in health service use. A few programs reported increased costs related to staffing. LIMITATIONS: Few care coordination programs were identified specifically for infants and thus studies that did not report age categories (ie, infants) may not have been identified. CONCLUSIONS: Care coordination programs demonstrate cost reductions for health systems, families, and insurers and improvement in quality of care. Efforts to increase the uptake and sustain these beneficial programs need further exploration.

Parenting self-efficacy instruments for parents of infants and toddlers: A review.

Background: Parenting Self-Efficacy, a concept first described in Bandura's Social Cognitive Theory, is a parent's belief in their ability to successfully parent their child. The concept of parenting self-efficacy is used by researchers to increase our understanding of parenting abilities and influences on child health and developmental outcomes. Numerous instruments exist for measuring parental self-efficacy; but little is known about the specific topics included in the measures and consistency across instruments. Therefore, this scoping review sought to compare parenting self-efficacy instruments for parents of infants and toddlers, focusing on comparison of parenting topics, scale format, and administration with the goal of providing guidance and recommendations for measurement selection. Methods: Our sample included 25 instruments and items from every instrument was evaluated and coded using NVIVO Qualitative Software. We reviewed the instruments' target population, subscales, number of items, response options, scoring range and instructions, theoretical background, and parenting topics across each instrument. Results: This review found three common factors across all instruments: parent, social and family, and child factors. Parent personal factors were addressed most frequently to evaluate self-efficacy and included topics such as, perception of parenting abilities, emotional reactions, and perceived successes. From our synthesis, we also offer recommendations for instrument selection and provide a conceptual model of parenting self-efficacy. Conclusions: The findings from this scoping review highlight the presence of key factors (parent, social & family, and child) necessary for the evaluation of parenting self-efficacy in parents of infants and toddlers. Given our results, a meta-analysis is needed to compare parenting self-efficacy scores across studies to better understand the associations between self-efficacy and parent and child outcomes.

Parents' pandemic NICU experience in the United States: a qualitative study.

BACKGROUND: Prior to the COVID-19 pandemic, parents of infants in the Neonatal Intensive Care Unit (NICU) frequently reported high levels of stress, uncertainty, and decreased parenting confidence. Early research has demonstrated that parents have had less access to their infants in the hospital due to restrictions on parental presence secondary to the pandemic. It is unknown how parents have perceived their experiences in the NICU since the beginning of the COVID-19 pandemic. The purpose of this study was to describe the lived experience of parents who had an infant in the NICU in the context of the COVID-19 pandemic to inform healthcare providers and policy makers for future development of policies and care planning. METHODS: The study design was a qualitative description of the impact of the COVID-19 pandemic on parents' experiences of having an infant in the NICU. Free-text responses to open-ended questions were collected as part of a multi-method study of parents' experiences of the NICU during the first six months of the pandemic. Participants from the United States were recruited using social media platforms between the months of May and July of 2020. Data were analyzed using a reflexive thematic approach. FINDINGS: Free-text responses came from 169 parents from 38 different states in the United States. Three broad themes emerged from the analysis: (1) parents' NICU experiences during the COVID-19 pandemic were emotionally isolating and overwhelming, (2) policy changes restricting parental presence created disruptions to the family unit and limited family-centered care, and (3) interactions with NICU providers intensified or alleviated emotional distress felt by parents. A unifying theme of experiences of emotional distress attributed to COVID-19 circumstances ran through all three themes. CONCLUSIONS: Parents of infants in the NICU during the first six months of the COVID-19 pandemic experienced emotional struggles, feelings of isolation, lack of family-centered care, and deep disappointment with system-level decisions. Moving forward, parents need to be considered essential partners in the development of policies concerning care of and access to their infants.