Former NICU Families Describe Gaps in Family-Centered Care.
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ABSTRACT:
SUBMITTER: Sigurdson K
PROVIDER: S-EPMC8106872 | biostudies-literature | 2020 Oct
REPOSITORIES: biostudies-literature
Publications
Former NICU Families Describe Gaps in Family-Centered Care.
Sigurdson Krista K Profit Jochen J Dhurjati Ravi R Morton Christine C Scala Melissa M Vernon Lelis L Randolph Ashley A Phan Jessica T JT Franck Linda S LS
Qualitative health research 20200725 12
Care and outcomes of infants admitted to neonatal intensive care vary and differences in family-centered care may contribute. The objective of this study was to understand families' experiences of neonatal care within a framework of family-centered care. We conducted focus groups and interviews with 18 family members whose infants were cared for in California neonatal intensive care units (NICUs) using a grounded theory approach and centering the accounts of families of color and/or of low socio ...[more]
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Project description:BackgroundImprovements in perinatal care have substantially decreased mortality rates among preterm infants, yet their neurodevelopmental outcomes and quality of life persist as a pertinent public health concern. Family-centered care has emerged as a holistic philosophy that promotes effective alliances among patients, families, and healthcare providers to improve the quality of care.AimsThis longitudinal prospective study aims to evaluate the neurodevelopmental outcomes and brain MRI findings in a cohort of preterm newborns admitted to a neonatal intensive care unit (NICU) adopting a family-centered care model.MethodsVery low birth weight (VLBW) infants admitted to the NICU of Modena between 2015 and 2020 were enrolled. Infants who underwent conventional brain magnetic resonance imaging (MRI) at term-equivalent age were included. Neurodevelopmental follow-up was performed until the age of 24 months by a multidisciplinary team using the Amiel-Tison neurological assessment and the Griffiths Mental Developmental Scales (GMDS-R). Neurodevelopmental outcomes were classified as major sequelae (cerebral palsy, DQ ≤ 70, severe sensory impairment), minor sequelae (minor neurological signs such as clumsiness or DQ between 71 and 85), and normal outcomes (no neurological signs and DQ > 85). Risk factors for severe outcomes were assessed.ResultsIn total, 49 of the 356 infants (13.8%) died before hospital discharge, and 2 were excluded because of congenital disorders. Of the remaining 305 infants, 222 (72.8%) completed the 24 month follow-up and were included in the study. Neurodevelopmental outcomes were classified as normal (n = 173, 77.9%), minor (n = 34, 15.3%), and major sequelae (n = 15, 6.8%). Among 221 infants undergoing brain MRI, 76 (34.4%) had major lesions (intraventricular hemorrhage, hemorrhagic parenchymal infarction, periventricular leukomalacia, and large cerebellar hemorrhage). In the multivariate regression model, the retinopathy of prematurity (OR 1.8; p value 0.016) and periventricular-intraventricular hemorrhage (OR 5.6; p value < 0.004) were associated with major sequelae.ConclusionsWe reported low rates of severe neurodevelopmental outcomes in VLBW infants born in an Italian NICU with FCC. Identifying the risk factors for severe outcomes can assist in tailoring and optimizing early interventions on an individual basis, both within the NICU and after discharge.
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Project description:BackgroundFamily-Centered Care (FCC) is an approach to healthcare planning, delivery and evaluation, based on beneficial partnerships between health professionals, patients and families. FCC may be particularly relevant for families with children with intellectual disability (ID), given their needs of continuum care.ObjectiveTo identify which components of the FCC are practiced and which health outcomes are considered effective in families with children with ID.MethodA systematic review guided by the PRISMA STATEMENT 2020 approach and the STROBE reporting guidelines was performed on specific databases through the EBSCOhost Web platform: MEDLINE with Full Text, CINAHL PLUS with Full Text, Academic Search Complete and Psychology and Behavioral Sciences Collection. Peer-reviewed articles published in English or Portuguese languages from 2018 to September 2023 were retrieved. Methodological quality was established using the Quality Assessment Tool for Observational, Cohort and Cross-Sectional Studies - NHLBI, NIH.ResultsTen studies met the eligibility criteria and were synthetized. The results revealed nine components, reflecting the way FCC was developed: shared decision-making; family education; respect for culture; family engagement; recognition of the family's needs, characteristics and interests; specialized care support; social and emotional support; family functionality; and family seen as a unit. The health outcomes demonstrate effective gains in improving children's health through family satisfaction with health services. Also achieved psychological and social benefits, with improved family well-being and quality of life, favoring family empowerment.ConclusionsThe evidence suggests that FCC components involves an effective partnership between the family and health professionals as the main key in developing care plans, as well as the experience that the family unit brings to the delivery of care. FCC approach include all family members as decision-makers, providing emotional, physical and instrumental levels of support. Health outcomes emerged in three strands; for children with ID, families and health services.
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Project description:ObjectiveTo increase understanding of current practices and perceptions of family-centered rounds (FCR) by providers for limited English-proficient (LEP) families relative to English-proficient families.MethodsUsing grounded theory methodology, we conducted ethnographic observations of FCR for LEP and English-proficient families on the pediatric wards at an urban teaching hospital. Focused coding of observation fieldnotes was performed independently, followed by regular group meetings to discuss discrepancies, refine codes, and identify theoretical direction. Data informed development of an interview guide used to conduct interviews with pediatric physicians, nurses, and interpreters. The iterative analysis process continued with interview transcriptions.ResultsFCR of 36 unique patient families were observed, of which 10 were LEP families. We conducted 20 interviews with 7 residents, 3 attendings, 5 nurses, and 5 interpreters. Major themes included: 1) standardization of FCR is needed to address equity issues for LEP families, 2) redefining the roles of medical interpreters would enhance the interpersonal interactions and relationships between families and health care providers, and 3) improving resources to allow interpreters to be used consistently will increase equity for LEP families.ConclusionsMany differences exist in FCR for LEP versus English-proficient families. FCR for LEP families may be optimized with standardization and training, redefining the interpreters' roles, and improving access to interpreters.
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Project description:PurposeTo explore the effect of spirituality and religious beliefs on FAmily CEntered (FACE) Advance Care Planning and medication adherence among human immunodeficiency virus (HIV) positive adolescents and their surrogate decision-makers.MethodsA sample of HIV-positive adolescents (n = 40) and their surrogates, aged ≥ 21 years, (n = 40), was randomized to an active Healthy Living Control group or the FACE Advance Care Planning intervention, guided by transactional stress and coping theory. Adolescents' spirituality and their belief that HIV is a punishment from God were assessed at baseline and 3 months after the intervention, using the Functional Assessment of Chronic Illness Therapy-Spiritual Well Being Scale, Expanded, Version 4.ResultsControl adolescents increased faith and meaning/purpose more than FACE adolescents (p = .02). At baseline, more behaviorally infected adolescents (16%) believed that HIV was a punishment from God as compared with those who were infected perinatally (8%). Adolescents endorsing that HIV was a punishment scored lower on spirituality (p = .05) and adherence to Highly Active Antiretroviral Therapy (HAART) (p = .04). Surrogates were more spiritual than adolescents (p ≤ .0001).ConclusionProviding family support in a friendly, facilitated environment enhanced spirituality among adolescents. Facilitated family conversations had an especially positive effect on medication adherence and spiritual beliefs among behaviorally infected adolescents.
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Project description:BackgroundWhile person-centered care (PCC) includes multiple domains, residential substance use disorder (SUD) treatment clients may value certain domains over others. We sought to identify the PCC domains most valued by former residential SUD treatment clients. We also sought to explore conceptual distinctions between potential theoretical PCC subdomains.MethodsWe distributed an online survey via social media to a national convenience sample of former residential SUD treatment clients. Respondents were presented with ten PCC domains in an online survey: (a) access to evidence-based care; (b) integration of care; (c) diversity/respect for other cultures; (d) individualization of care; (e) emotional support; (f) family involvement in treatment; (g) transitional services; (h) aftercare; (i) physical comfort; and (j) information provision. Respondents were asked to select up to two domains they deemed most important to their residential SUD treatment experience. We used descriptive statistics to identify response frequencies and logistic regression to predict relationships between selected domains and respondents' race, gender, relationship status, parenting status, and housing stability.ResultsOur final sample included 435 former residential SUD treatment clients. Diversity and respect for different cultures was the most frequently selected domain (29%), followed by integration of care (26%), emotional support (26%), and individualization of care (26%). Provision of information was the least frequently chosen domain (3%). Race and ethnicity were not predictive of selecting respect for diversity. Also, parental status, relationship status and gender were not predictive of selecting family integration. Employment and housing status were not predictive of selecting transitional services.ConclusionsWhile residential SUD treatment facilities should seek to implement PCC across all domains, our results suggest facilities should prioritize (a) operationalizing diversity, (b) integration of care, and (c) emotional support. Significant heterogeneity exists regarding PCC domains deemed most important to clients. PCC domains valued by clients cannot be easily predicted based on client demographics.
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Project description:Background and objectivesIt is unclear which specific well-child visits (WCVs) are most frequently missed and whether age-specific patterns of attendance differ by race or insurance type.MethodsWe conducted a retrospective cohort study of children 0 to 6 years old between 2011 and 2016 within 2 health networks spanning 20 states. WCVs were identified by using International Classification of Diseases, Ninth and 10th Revisions and Current Procedural Terminology codes. We calculated adherence to the 13 American Academy of Pediatrics-recommended WCVs from birth to age 6 years. To address data completeness, we made 2 adherence calculations after a child's last recorded WCV: 1 in which we assumed all subsequent WCVs were attended outside the network and 1 in which we assumed none were.ResultsWe included 152 418 children in our analysis. Most children were either publicly insured (77%) or uninsured (14%). The 2-, 4-, and 6-month visits were the most frequently attended (63% [assuming no outside care after the last recorded WCV] to 90% [assuming outside care]), whereas the 15- and 18-months visits (41%-75%) and 4-year visit (19%-49%) were the least frequently attended. Patients who were publicly insured and uninsured (versus privately insured) had higher odds of missing WCVs. Hispanic and Asian American (versus non-Hispanic white) patients had higher odds of attending WCVs.DiscussionThe 15- and 18-month WCVs as well as the 4-year WCV are the least frequently attended WCVs. The former represent opportunities to identify developmental delays, and the latter represents an opportunity to assess school readiness.
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Project description:Healthy adolescent development and successful transition to adulthood begins in the family. Supporting families in their communities and cultures ultimately makes this support system stronger. Parenting adolescents is described as the most challenging life stage for parents. Primary care providers are in an ideal position to support families with teens. This article reviews stressors, recommends strength-based strategies, describes how health care delivery systems can be organized to address the needs of adolescents and their families, shares a case study of a family-oriented, youth-friendly primary care clinic, and provides practical strategies for developing family-centered adolescent care within primary care practices.
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Project description:BackgroundHelicopter Emergency Medical Services (HEMS) in the United Kingdom (UK) deliver enhanced care to high-acuity, critically ill and injured patients. To enable patients to meet the HEMS team who treated them, many services within the UK have developed or are in the process of developing a Patient and Family Aftercare Service (PFAS). This study aims to evaluate whether the introduction of PFAS mitigates anxiety associated with patient aftercare visits.MethodsA service evaluation of anxiety in HEMS team members before and after patient aftercare visits were conducted. The study was carried out between 1 September 2023, and 31 October 2023, and patient visits were undertaken between March 2022 and July 2023. An electronic survey was distributed to the respondents who provided informed consent for participation. The survey comprised the validated generalised anxiety disorder anxiety scale (GAD-7) and five additional contextualised statements developed through the wider PFAS. Anonymised data were collected using REDCap, a secure electronic database and was analysed in R programming. Free-text comments were reported by content analysis, placed into themes, and discussed with a narrative to complement the quantitative analysis.ResultsOf the 33 recipients, 25 completed the questionnaire. Between the pre- and post-aftercare visits, a statistically significant difference was found between scores for GAD-7 (0.004, p < 0.05) and contextualised statements (0.001, p < 0.05). In addition, six broad themes were identified through content analysis. These include the emotional impact of patient interaction, coping strategies and structural changes in the aftercare system, challenges in patient and family expectations, anxieties relating to operational commitments, memory and recall of the incident, and a positive impact on personal growth.ConclusionAnxiety related to patient aftercare visits was reduced when measured before and after the patient visits. Following this service evaluation, we can hypothesise that within pre-hospital care, PFAS plays an important structural role. Future research should focus on affirming the correct tool to measure anxiety in multi-disciplinary teams and prospectively evaluating these methods collaboratively across multiple pre-hospital services.
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Project description:ObjectiveTo identify how family advocates and clinicians describe disparities in NICU quality of care in narrative accounts.Study designQualitative analysis of a survey requesting disparity stories at the 2016 VON Quality Congress. Accounts (324) were from a sample of RNs (n = 114, 35%), MDs (n = 109, 34%), NNPs (n = 55, 17%), RN other (n = 4, 1%), clinical other (n = 25, 7%), family advocates (n = 16, 5%), and unspecified (n = 1, <1%).ResultsAccounts (324) addressed non-exclusive disparities: 151 (47%) language; 97 (30%) culture or ethnicity; 72 (22%) race; 41 (13%) SES; 28 (8%) drug use; 18 (5%) immigration status or nationality; 16 (4%) sexual orientation or family status; 14 (4%) gender; 10 (3%) disability. We identified three types of disparate care: neglectful care 85 (26%), judgmental care 85 (26%), or systemic barriers to care 139 (44%).ConclusionsNearly all accounts described differential care toward families, suggesting the lack of equitable family-centered care.
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Project description:AimsThe aim of this study was to examine the potential association of family-centred care as perceived by parents during a NICU stay with parents' depressive symptoms at discharge and at 4 months corrected for infant age.DesignA longitudinal, multicentre cohort study was conducted from 2018 to 2020 in 23 NICUs across 15 countries.MethodsParents (n = 635 mothers, n = 466, fathers) of infants (n = 739) born before 35 weeks of gestation and admitted to the participating NICUs were enrolled to the study during the first weeks of their infants' hospitalizations. They responded to Digi-FCC daily text messages inquiring about their perception of family-centred care provided by NICU staff. In addition, they completed a questionnaire assessing their overall perception of family-centred care at discharge. Parents' depressive symptoms were measured by the Edinburgh Postnatal Depression Scale at discharge and again after discharge when their infants were at 4 months corrected for age.ResultsThe mothers' and the fathers' perceptions of family-centred care were associated with their depressive symptoms at discharge and at 4 months corrected age, controlling for gestational age, multiple birth, parent education and relationship status. Parents' participation in infant care, care-related decisions and emotional support provided to parents by staff explained the variation in the parents' perceptions of family-centred care. The factors facilitating the implementation of family-centred care included unlimited access to the unit for the parents and for their significant others, as well as amenities for parents.ConclusionsOur study shows that family-centred NICU care associates with parents' depressive symptoms after a NICU stay.ImpactDepression is common in parents of preterm infants. The provision of family-centred care may protect the mental well-being of parents of preterm infants.
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