The experiences of gender and sexually diverse parents using support and services for their young children: An integrative review.

AIM: To address: What are the experiences of 2SLGBTQQIA+ parents using parenting supports and services to meet their children's early childhood development needs (<5 years of age)? DESIGN: Whittemore and Knafl's (2005) integrative review methodology. METHODS: Electronic databases were searched from 2000 to October 14, 2022 for empirical studies or reviews addressing the research question. The title and abstract of 12,158 articles were screened for inclusion in the review by two independent researchers; 175 of these articles underwent full-text review. Studies selected were critically appraised using a Joanna Briggs Institute Critical Appraisal tool. Relevant key findings were extracted from each study and entered into N-VIVO-12. Thematic content analysis was employed and PRISMA guidelines were adhered to. RESULTS: A total of 18 articles (15 qualitative and three multi-method studies) met the inclusion criteria and were selected for the review. Seven themes were revealed from analysis of the studies: (1) 2SLGBTQQIA+ Status kept a secret; (2) Forced to come out; (3) Heteronormative messaging; (4) Feeling excluded; (5) Stigmatised; (6) Parents act as educators; and (7) Positive experiences. CONCLUSION: This integrative review provides nurses with insight into the experiences of 2SLGBTQQIA+ parents using health care services for their young child. IMPLICATIONS FOR THE PROFESSION: This article highlights what changes nurses need to make to their practice to ensure appropriate, inclusive care for clients of diverse sexual and gender identities and their families. IMPACT: Health care providers, especially nurses, have an opportunity to improve the experiences of these families and positively impact their health and well-being. Additionally, there is a need for research with the 2SLGBTQQIA+ parent community and the use of rigorous methodological techniques, including clearly linking participants' gender and sexual identities with study findings, to improve our understanding of 2SLGBTQQIA+ parent experiences. PATIENT OR PUBLIC CONTRIBUTION: Although there was no direct patient contribution to the work since it was an integrative review of the literature, indirectly patient contributions are incorporated from the original research results of studies incorporated into this review.

An evaluation study of caregiver perceptions of the Ontario's Health Links program.

INTRODUCTION: In 2012, the Ontario government launched Health Links (HL), which was designed to integrate care for patients with multimorbidity and complex needs who are high users of health services. This study evaluated perceptions of family and friend caregivers of patients enrolled in the HL program. Research questions included: What are (a) characteristics of caregivers of patients enrolled in HL (b) caregivers' perceptions of the program in relation to HL's guiding principles (patient and family-centred care, accessibility, coordination of services, and continuity of care and care provider) and (c) caregivers' perceptions of the impact of HL on themselves and their care recipient? METHODS: This study involved a survey and qualitative, semi-structured interviews. HL guiding principles (patient and family-centered care, accessibility, coordination of services, and continuity) guided the analysis. RESULTS: Twenty-seven surveys and 16 qualitative interviews were completed. Caregivers reported high levels of strain [Modified Caregiver Strain Index (MCSI) 15.5 (SD 7.03)], mild anxiety [Generalized Anxiety Disorder (GAD 7), 9.6 (SD 6.64)] and depression [Center for Epidemiological Studies Depression Scale (CES-D 10), 11.9 (SD 8.72)]. Regarding the guiding principles, most caregivers had a copy of the HL patient's care plan, although some caregivers noted that their needs were not included in the plan, nor were they asked for input. Caregivers found the program's home and phone visits accessible. Despite minimum wait times for community-based services, other access barriers persisted, (i.e., out-of-pocket costs). HL provided well-coordinated patient services, although some perceived that there was poor team communication. Caregiver perceptions varied on the quality of care provided. Provider continuity provided caregiver relief and patient support: A lack of continuity was related to changes in care coordinators and weekend staff and attrition. CONCLUSIONS: Caregivers of HL patients appreciated patient- and family-centred, accessible, consistent, coordinated and team-based approaches in care. Providers and decision-makers are urged to ensure that programs aimed at high system users address these core concepts while addressing caregivers' needs.

Outcomes following neonatal portal vein thrombosis: A descriptive, single-center study and review of anticoagulant therapy.

BACKGROUND: Neonatal portal vein thrombosis (PVT) is uncommon with potentially serious complications that may manifest in infancy and childhood. OBJECTIVE: The primary aim of our study was to describe the short-term and long-term outcomes of neonatal PVT. METHODS: A retrospective chart review was conducted from 2008 to 2016 of neonates diagnosed with PVT. A systematic review was also performed from 2000 to 2018 to evaluate anticoagulant therapy (ACT) in neonatal PVT. RESULTS: Forty-four premature and 30 term infants (mean gestational age 30.7 vs 39.1 weeks, respectively) had PVT. Sixty-eight involved the left portal vein, one involved only the main portal vein, and 5 involved ≥1 vein. PVT was catheter associated in 46 (62%); none of the 7 neonates tested had thrombophilia. Of 74 neonates, 19 (26%) received ACT and 55 (74%) were untreated. The mean follow-up duration was 16.6 months (SD = 17.62; range, 0-89.6); 59.5% were followed for ≥6 months. On last ultrasound examination, thrombus resolution was documented in treated (ACT; n = 19) and nontreated (n = 55) neonates: 12 (63%) versus 32 (58%) with complete resolution, 1 (5%) versus 6 (11%) partial, 0 versus 1 (2%) extension, and 6 (32%) versus 16 (29%) had nonprogressive lesions, respectively. Seventy-one (96%) had no complications. Seventy-one articles met inclusion criteria for the systematic review and 19 were retained for analysis after assessment. CONCLUSIONS: PVT resolution rate was similar to previous reports. Although a low complication rate was detected, longer follow-up is necessary to determine the need for early treatment and the precise incidence of outcomes such as portal hypertension.

Respiratory syncytial virus hospitalization and incurred morbidities the season after prophylaxis.

OBJECTIVES: The primary objective of this study was to determine the incidence and incurred morbidities of Respiratory syncytial virus (RSV)-related hospitalization (RSVH), the season following completion of prophylaxis. METHODS: A retrospective study was conducted of all infants enrolled in a prophylaxis clinic in one institution during the 2009 to 2014 RSV seasons. RSV infection was identified by Diseases codes and confirmed by RSV-positivity. Data were classified into five groups based on indications for prophylaxis. The incidence of RSVH was calculated. For each subgroup, differences in characteristics between children with and without RSVH were analyzed by independent t test or chi-square test. RESULTS: During five RSV seasons, 827 infants were enrolled. RSVH incidence the season following prophylaxis was 2.1% (n=17/827). Children with chronic lung disease (CLD) had the highest RSVH incidence (7.7%; n=4/52) followed by preterms 33 to 35 weeks gestation (2.5%; n=4/162), those with complex medical disorders (2.2%; n=3/135), those with congenital heart disease (1.5%; n=1/66) and preterms less than or equal to 32 weeks gestation (1.2%; n=5/412). There was no statistically significant association between indications for prophylaxis and RSVH (Fisher exact test, P=0.060). The odds of RSVH were 4.9 times greater (odds ratio [OR]=4.9; 95% CI: 1.53, 15.55; P=0.007) in CLD compared to those without CLD. The median length of RSVH stay was 4 days; 58.8% (n=10/17) required oxygen (median 1 day); 29.4% (n=5/17) required intensive care. CONCLUSIONS: Infants with CLD are at highest risk for RSVH in the season postprophylaxis and may merit palivizumab for more than two seasons dependent on disease severity. However, larger prospective studies are necessary to confirm the findings before embarking on a strategy of providing prophylaxis for a third RSV season.

An integrative review of parent satisfaction with care provided in the neonatal intensive care unit.

OBJECTIVE: To synthesize findings from the published empirical literature on parent satisfaction with care provided in the neonatal intensive care unit (NICU). DATA SOURCES: Electronic databases including CINAHL, Medline, Embase, PsycInfo, Sociological Abstracts, the Cochrane Library, and the Campbell Library were searched for relevant research dating from January 1990 to the beginning of October 2011. The reference lists of all studies were reviewed and the personal files of the authors were also searched for relevant studies. STUDY SELECTION: Twelve studies (nine quantitative descriptive, two qualitative descriptive, and one mixed methods) were identified that met the review inclusion criteria. Only studies written in English were selected. DATA EXTRACTION: Whittemore and Knafl's methodology for integrative reviews guided the data extraction and subsequent analysis. Studies meeting the review inclusion criteria were analyzed sequentially. Data were extracted and organized under the following headings: author, year, and country; study purpose and design; sample size and setting; study variables and data collection; study findings; and limitations. DATA SYNTHESIS: Studies examining parent satisfaction with the care provided in the NICU were synthesized under four main themes: (a) parents' degree of satisfaction with care, (b) factors associated with parents' satisfaction with care, (c) elements of care parents view as important, and (d) discrepancies between parent expectations and actual ratings of care. CONCLUSIONS: The vast majority of parents were highly satisfied with the care they and their infants received in the NICU. However, other evidence points to less-than-optimal NICU care that is not meeting parents' expectations. These findings provide some direction as to what is important and satisfying to parents whose children must reside in the NICU. However, given the quality and dearth of the evidence, gaps remain in our understanding, and additional, more rigorous research is needed.

The impact of prophylaxis on paediatric intensive care unit admissions for RSV infection: a retrospective, single-centre study.

Respiratory syncytial virus (RSV) is the leading cause of lower respiratory tract infections and hospitalizations in children aged < 2 years. The aim of this retrospective, single-centre study was to examine the characteristics of patients admitted to a paediatric intensive care unit (PICU) with RSV infection following the implementation of a RSV prophylaxis programme. Electronic hospital medical records of all PICU admissions for RSV infection were searched from 2003 to 2009. Data on baseline demographics, underlying disease, criteria for hospitalization, respiratory diagnosis and management, complications and palivizumab prophylaxis were collected. A total of 181 patients were admitted with RSV infection, accounting for 5.7% of all admissions. Eighty-four percent were ≤ 2 years of age. Majority (70.2%) had no underlying medical illness, and 79.6% received antibiotics as part of their medical treatment. Comparison of children aged ≤ 2 years and those >2 years revealed that fewer of the younger cohort (20.4% versus 79.3%; p < 0.001) had an underlying medical condition. RSV infection occurred in 3.3% (n = 6) children who had received palivizumab prophylaxis, and there were two deaths. The results indicate that > 88% of all PICU admissions would not qualify for RSV prophylaxis under our established guidelines and 66% of the children aged ≤ 2 years were > 36 weeks gestation and are not currently targeted for prophylaxis. The number of high-risk infants admitted to PICU with RSV infection has likely plateaued, and further reductions in admission rates may only be realised with the use of universal, vaccine immunization programmes.

Development and evaluation of an instrument to measure parental satisfaction with quality of care in neonatal follow-up.

OBJECTIVE: The goal of this study was to develop and subsequently evaluate the psychometric properties of a new discriminative instrument to measure parental satisfaction with the quality of care provided in neonatal follow-up (NFU) programs. METHOD: The methodological framework for developing and evaluating measurement scales described by Streiner and Norman (Health Measurement Scales: A Practical Guide to Their Development and Use. 3rd ed. New York: Oxford University Press; 2003) was used for the study. Informing the phases of the research was a sample of 24 health care professionals and 381 parents who use NFU services. RESULTS: A comprehensive list of items representing the construct, parental satisfaction with quality of care, was generated from published reliable and valid instruments, research studies, focus groups with health care experts, and focus groups with parents. Using a clinimetric approach, the 62 items generated were reduced to 39 items based on parents' ratings of importance and refinement of the items by the research team. After content validation and pretesting, the instrument was tested with parents and underwent item-analysis. The resulting 16-item instrument was composed of 2 subscales, Process and Outcomes. Evaluation of the instrument's psychometric properties indicated adequate test-retest reliability (intraclass correlation coefficient = 0.72) and internal consistency (Process subscale, alpha = 0.77; Outcomes subscale, alpha = 0.90; overall instrument, alpha = 0.90), as well as good content and construct validity. A confirmatory factor analysis supported the multidimensionality of the construct. CONCLUSION: This new instrument provides clinicians and policy-makers with a tool to assess parental satisfaction with the quality of care in NFU, so areas of dissatisfaction can be identified and changes implemented to optimize service provision.