Family-centered Care Research Articles

Medical Alert Cards for patients with an anorectal malformation: a useful tool to increase awareness.

Anorectal malformations (ARMs) are rare congenital anomalies causing altered anatomy and frequent hospitalizations. Parental awareness and clear communication are crucial in family-centered care. This study assesses the impact of patient-held ARM Medical Alert Cards on healthcare providers and caregivers. Caregivers of children with ARMs, including cloacal anomalies, received Medical Alert Cards with (1) contact details; (2) disease-related information; and (3) patient-specific data. A survey evaluated these cards' effectiveness in enhancing ARM awareness among healthcare professionals and caregivers. Among 33 respondents, 29 (88%) found the cards helpful in increasing ARM awareness. Both caregivers and providers found the content coherent, with a median readability score of 9 (IQR 8-10). The card layout was well-received by 30 out of 32 respondents (94%), and all noted the clarity of the contact details, facilitating patient referrals to specialized care. Most caregivers (13 out of 14, 93%) expressed willingness to use these cards in medical settings. Suggestions for improvement included adding more patient-specific information, enhancing readability, and providing visual anatomy diagram. Medical Alert Cards for patients with ARMs can enhance understanding of ARMs among caregivers and healthcare providers, serving as a vital tool in patient-centered management strategies tailored to individual needs.

Caregiver Accompaniment in Pediatric Critical Care Transport: A Systematic Scoping Review.

Family-centered care is a critical component of critical care interfacility and medical retrieval transport (MRT) services. These services provide a critical bridge for a physiologically and psychologically unique population often best served in specialized, tertiary centers. Caregivers often wish to accompany patients during MRT. However, there is currently little research on the impact of caregiver accompaniment on MRT. The aim of the study is to determine: 1) What are caregiver attitudes to accompanied and unaccompanied MRT? 2) What are healthcare provider attitudes to caregiver presence? 3) What are patient attitudes to caregiver presence? and 4) Are there differences in patient outcome depending on caregiver presence? Data sources are MEDLINE, Embase, and CINAHL. Studies with a focus on patient, caregiver, or family-oriented care practices in MRT. Reviewed articles were not restricted unless they discussed neonatal transport, palliative transport, were non-English, or were conference proceedings. We screened 1373 articles, with 45 full-text articles reviewed. After removal of duplicates and abstract-only results, 25 articles remained. Three additional articles were found in references of reviewed articles. Articles generally supported caregiver presence on MRT, with caregivers and providers in agreement. However, for many services, space was a limiting factor controlling when caregivers could travel. There is a paucity of literature on this topic, and studies were entirely from English-speaking countries. Caregivers and healthcare providers largely prefer caregiver accompaniment on MRT services. There is little data on patient perspectives and transport-related adverse events affecting patient outcomes.

Caregiver experiences of oral feeding in infants on long-term high flow nasal cannula support

Purpose Navigating the feeding journey of medically complex infants on long-term high flow nasal cannula support can be challenging for caregivers, especially given inconsistencies in clinical practice for oral feeding on high flow nasal cannula support. The aim of this study was to explore the perspectives of caregivers who have experienced this journey, to inform best practice care. Method This study used a generic qualitative inquiry approach. Semi-structured interviews were conducted with seven caregivers of children who had been on long-term high flow nasal cannula support as infants during 2021. Reflexive thematic analysis was used to generate meaning-united stories. Result All caregivers reported oral feeding difficulties that persisted beyond hospitalisation, resulting in demanding mental loads and care arrangements. Caregivers described how these difficulties were often exacerbated by complex medical needs and the strategies they experimented with to support oral feeding. Caregiver’s experiences in the healthcare system were characterised by inconsistencies in care pathways and variable access to specialist feeding services. The importance of a collaborative relationship with healthcare professionals and a conducive hospital environment were also highlighted. Conclusion The oral feeding journey for families with infants on long-term high flow nasal cannula support was characterised by multifaceted challenges and implications. Further research is required to establish and provide consistent, family-centred, and evidence-based care for this population.

Implementation facilitators and barriers of person and family-centred emergency care

Background: At the time of the research, the nurses in the designated hospital’s emergency department did not implement person- and family-centred care to the detriment of patients and families. They were, however, eager to embark on the implementation of the recommendations of the Registered Nurses Association of Ontario for person- and family-centred care.Aim: This study therefore aimed to explore and describe the possible implementation facilitators and barriers prior to the use of the association’s recommendations.Setting: The study included eight nurses with different specialisation fields and more than 5 years of experience in an emergency department.Methods: During focus group interviews with nurse participants, the domains of the Consolidated Framework for Implementation Research were used to explore whether the recommendations of the Registered Nurses Association of Ontario could be used to structure person- and family-centred care in the emergency department of the designated hospital in the Mpumalanga province in South Africa. The framework guided the deductive data analysis.Results: The identified facilitators referred to a positive match between the recommendations and existing practice in the department. The barriers referred to the department’s fast-paced work environment in which a combination of emergency and primary care is delivered.Conclusion: One of the facilitators referred to the participants being used to ongoing training by and communication from management to support their adjustment to improvements. One of the barriers referred to the department’s fast-paced work environment.Contributions: The article contributes to practice improvement with a description of the use of frameworks to explore possible facilitators and barriers prior to endeavours to implement recommendations.

Strategies to support language development in neonatal intensive care unit: a narrative review.

Despite neonatal intensive care advancements and quality improvements, preterm infants often experience delays in speech and language development during early childhood. The etiological pathway of language delays is multifactorial, including younger gestational age at birth, male sex, pregnancy complications including gestational diabetes mellitus and preeclampsia, organic pathology from neonatal morbidities, environmental factors of the neonatal intensive care unit (NICU) and prolonged hospitalization, home environment including socioeconomic status and parental education, and parent-infant interactions. As early language experiences and environments are crucial for the development of language processing, strategies to support language development should be implemented from the NICU onward. This study aimed to summarize evidence-based strategies for language development through an extensive review of nutrition, NICU environment, language and sound exposure, developmental care interventions, and family-centered care. Promoting breastfeeding, increasing parent-infant interactions in a single-family room setting, nurturing the language environment via parental book reading and language interventions, and parent-integrated interventions in the NICU could potentially enhance language development among preterm infants. These supportive strategies can be integrated through family-centered care, which recognizes parents as primary caregivers and collaborative partners.

Empowered Family-Centered Care: Our Story.

Empowered Family-Centered Care: Our Story.

Culturally Aligned Aged-Care Services: Addressing Needs and Barriers in General Santos City, Philippines

The aging population in General Santos City, Philippines, presents unique challenges in accessing and delivering appropriate aged-care services. This study aimed to identify the preferred aged-care services among the elderly population in General Santos City, considering their cultural values and needs, and to propose a framework for developing culturally aligned aged-care support services for the elderly in General Santos City. A mixed-methods research design was employed, combining qualitative and quantitative approaches. In-depth interviews with 30 elderly residents, community leaders, and caregivers were conducted to gather information on their preferences and needs for aged-care services. Thematic analysis was used to analyze the qualitative data. A survey questionnaire was also used to collect quantitative data on the demographic characteristics of the respondents and their perceptions of the importance of various aged-care services. The findings indicated healthcare services, home-based care, and social support as essential components of aged-care services. Barriers to accessing services included availability, affordability, accessibility, and awareness. Culturally sensitive, family-centered, and community-based care was preferred. The study also found that the elderly in General Santos City have a strong preference for culturally aligned aged-care services that are family-centered and community-based. They also expressed a need for affordable and accessible healthcare services, as well as social support services to reduce isolation and promote mental well-being. In conclusion, the study highlights the need for a holistic aged-care approach that integrates healthcare services, home-based care, and social support, while considering cultural values and addressing barriers to access. The proposed aged-care services emphasize culturally sensitive, family-centered, and community-based models of care. These models should be tailored to the specific needs of the elderly population in General Santos City, taking into account their cultural values and beliefs.

Family-Centered Care from the Point of View of Undergraduate Nursing Students Studying in Selected Public Universities: A Cross-Sectional Study

Background: The concept of family-centered care (FCC) is central to the care model and is an essential core principle of pediatric nursing. Objectives: This study aimed to assess undergraduate nursing students' perceptions of FCC in selected government universities and examine differences in nursing students' perceptions of FCC based on gender and academic level. Methods: A cross-sectional design was used, involving 124 eligible students. Data were collected using a validated Family-Centered Care Questionnaire (FCCQ), which had a Cronbach’s alpha score of 0.90. Statistical package for social sciences (SPSS) version 25 was employed for data analysis, specifically for calculating means, standard deviations (SDs), frequencies, percentages, and conducting independent t-tests. Results: The overall mean score of perceptions was 3.35 ± 0.76. The "Family is the constant" dimension had the highest score (3.45 ± 0.91), while the "Developmental needs" dimension had the lowest score (3.26 ± 0.95). There was a significant difference in perceptions of FCC between male and female students (t = -5.291, P < 0.001) and between third- and fourth-year students (t = 7.345, P < 0.001). Conclusions: It can be concluded that undergraduate nursing students had modest perceptions of FCC, and there was a significant difference in these perceptions based on gender and academic level. This study provides valuable insight into FCC, which can inform policy design and interventions in nursing education in Jordan. An educational program is recommended to improve undergraduate nursing students' perceptions of FCC.

PP059 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: MEASURING FAMILY-CENTRED CARE IN SHEFFIELD CHILDREN’S HOSPITAL’S CRITICAL CARE UNIT

PP059 Topic: AS07–Family Care: Patient and Family Centered Care, Family Presence, Patient and Family Engagement in Research and Care/Patient Diaries/Other: MEASURING FAMILY-CENTRED CARE IN SHEFFIELD CHILDREN’S HOSPITAL’S CRITICAL CARE UNIT

Interventional Strategies to Mitigate Maternal Stress and Enhance Coping Skills During Neonatal Admission Into Intensive Care Units in Low- and Middle-Income Countries: A Scoping Review.

Mothers of high-risk neonates experience tremendous stress during neonatal intensive care unit (NICU) admission. This stress has a negative impact on mothers' participation in neonatal care activities, psychological health and coping skills in the NICU. To determine the impact of interventional strategies to reduce maternal stress and enhance coping skills during neonatal admission to the NICU. A scoping review was carried out following the methodological framework outlined by Arksey and O'Malley. This scoping review was conducted as per the Joanna Briggs Institute guidelines, including a quality appraisal checklist for randomised and nonrandomised controlled trials. Patterns, advances, gaps, evidence for practice and research recommendations from the review (PAGER framework) were used to report the results. The following international databases were used to search for primary articles: Medline via PubMed, EBSCOhost via CINAHL, Scopus, Web of Science and the ProQuest Medical Library. Original studies published in English between January 2011 and January 2023 from low- and middle-income countries (LMICs) that assessed maternal stress and coping skills during neonatal NICU admission were included in the review. The review included 15 articles from LMICs, of which 60% were from middle-income, 25% were from lower-middle-income and 15% were from low-income countries. Interventional strategies were described under five categories. Maternal stress decreased significantly across all three subscales of the PSPS: 'sight and sound', 'baby looks and behavior' and 'parental relationship with baby and role alteration' during neonatal NICU admission. Interventional strategies involving family-centred care and emotional and psychological supportive care have been reported to have a consistently positive impact on alleviating maternal stress and enhancing coping skills in the NICU. Healthcare professionals, especially nurses, are pivotal in promptly recognising maternal stress and NICU stressors. The participation of mothers in neonatal care, such as through family-centred care and emotional support interventions, significantly reduces maternal stress and enhances coping skills.

2024 AAHA Community Care Guidelines for Small Animal Practice.

Community care is a creative way of thinking about health care that mobilizes resources within a community and consists of four core principles: recognition of the urgency of access-to-care for the veterinary profession, collaboration within community networks, family-centered health care, and redefining the gold standard of care. The AAHA Community Care Guidelines for Small Animal Practice offer strategies to help busy veterinary practitioners increase access to care within their practice and community by optimizing collaborative networks. While these guidelines do not claim to provide exhaustive solutions to access-to-care issues, they propose a starting point from which private practices can explore and implement workable solutions for their community and their practice. Broadening the scope of care to reach all people with pets requires multimodal, collaborative, and creative solutions both within and outside of the veterinary profession. These solutions can begin with greater communication and collaboration between private veterinary practices and nonprofit veterinary practices, with the goal of keeping pets in their homes with their loving families as much as reasonably possible.

Implementation of the Family-Centered Care Model During Invasive Actions of Giving Injections and Installing Infusions Children's Nurses

The aim of implementing Community Service is the implementation of the Family Centered Care Model in the Children's Inpatient Room using invasive injections and infusions at Dr Soetomo Hospital, Surabaya. This community service was carried out at the Children's Inpatient Installation at Dr. RSUD. Soetomo Surabaya consists of 4 rooms. The rooms are the sleeping room, Nakula Sadewa room, Bona 1 room, and Bona 2 room with a total of 92 nurses. The four rooms are children's inpatient rooms that provide low-care nursing care so services with an integrated family-oriented care (FCC) system have not yet been established. The method used in this community service is to involve the family, each nurse will carry out invasive procedures on children with stages of preparation, implementation, and reporting. Implementation results Almost all patient respondents received family-centered care in the good category, 85 people (92.4%). Meanwhile, there were only 7 patients who underwent family-centered care in the sufficient category (7.6%). This shows that patients and nurses at IRNA Children's Hospital Dr. Soetomo Surabaya have implemented a family-centered care system in nursing care and health services.

Key Determinants of Family-Centered Care for Children with Leukemia

This study examines the relationship between health status, parental knowledge, and parental attitudes with the application of family-centered care (FCC) for children with leukemia at Abdul Moelok Regional Hospital, Lampung Province. Using a quantitative approach with a cross-sectional design, 92 respondents were selected from a population of 1,200 leukemia patients treated between 2021 and 2022. Data were collected through a validated questionnaire that measured parental knowledge, attitudes, and health status, with analysis conducted using the gamma correlation test. The results indicate significant relationships between health status, parental knowledge, and parental attitudes with the implementation of FCC. Factors such as age, education, income, caregiving duration, and disease length influenced the health status and FCC application. The study also reveals that caregivers face challenges in providing care, particularly due to financial burdens and physical strain, impacting their quality of life. Additionally, cultural factors affect how parents communicate the diagnosis to children, with some families delaying disclosure based on cultural norms.

Parental participation in newborn care in the view of health care providers in Uganda: a qualitative study

BackgroundEvidence suggests that family-centered care for sick newborns, where parents are co-caregivers in newborn care units, can result in increased breastfeeding frequency, higher weight gain, earlier discharge, and reduced parental anxiety. This study explored healthcare providers' perceptions and experiences of parental participation in care for sick newborns in the newborn care units in two high-volume maternity units in Uganda, with the aim of informing interventions that promote family-centered care for newborns.MethodsAn exploratory qualitative study was conducted between August and December 2023. Sixteen in-depth interviews were held at a regional and general hospital in the rural eastern region of Uganda. The interviews were audio-recorded and then transcribed, followed by a reflexive thematic analysis approach to generate themes.FindingsWe identified four key themes: (1) creating order to ensure the safety of newborns in the newborn care unit; (2) parental participation as a tool for overcoming workload in the Newborn care unit; (3) redirecting parental involvement to focus on medically endorsed newborn care practices; and (4) stress management targeting mothers to ensure newborn survival.ConclusionHealthcare providers encourage parents to participate in caring for their newborns in the newborn care units, mainly to reduce their workload. However, our study highlights the imbalanced nature of parental involvement, where HCPs control the tasks parents can or cannot perform, essentially deploying them as "assistants" rather than equal partners, contrary to the ideals of family-centered care. Transforming the current "healthcare provider-centered" model of caring for sick newborns to one that is family-centered will require training providers on the benefits of family-centered care and developing guidelines for its structured implementation within a resource-limited setting.

Enhancement of Family-Centred Care Is Associated with a Reduction in Postmenstrual Age at Discharge in Preterm Infants

Background/Objectives: Long hospitalisation has been recognized as an independent risk factor for poor neurodevelopmental outcomes of preterm infants. Systematic training and early inclusion of parents in their preterm infant’s care is a strategy to shorten the length of hospital stay. We implemented an enhanced stepwise family-centred care program and assessed its effects on postmenstrual age (PMA) at discharge and parental satisfaction. Methods: This prospective single-centre longitudinal cohort study was carried out in a German level III neonatal unit from October 2020 to May 2023. Five consecutive 6-month cohorts (1 baseline and 4 intervention cohorts, 169 infants and their caregivers) were analysed. Results: Mean PMA at discharge did not change in the total cohort but declined significantly in patients without neonatal morbidities from baseline to cohort 4 (37.2 ± 1.4 to 36.1 ± 1.6 weeks; p = 0.036). Concomitantly, discharge with tube feeding raised from 2.4% to 74.1% (p < 0.001) and discharge with home monitoring raised from 9.8% to 74.1% (p < 0.001), while unplanned readmissions remained unchanged (p = 0.44). Parental satisfaction with time point of discharge increased non-significantly from baseline to cohort 4 (75.8% vs. 95.7%; Chi2 0.22). Conclusions: Discharge of preterm infants at a significantly lower PMA is feasible through enhancement of family-centred care and is very well accepted by parents.

Learning from those who thrive: protective factors and neuroimaging markers in adolescents with complex congenital heart disease and with a favorable neurodevelopmental profile

ABSTRACT Patients with complex congenital heart disease (cCHD) are at risk for neurodevelopmental impairments, yet many patients develop normally. This study investigated associations between a favorable neurodevelopmental profile and protective factors, quality of life (QoL), resilience, and brain development. Adolescents with cCHD (n = 100) were prospectively enrolled. Neurodevelopmental profiles comprised IQ, executive functions, and behavior. Standardized neuropsychological tests and questionnaires were used to assess neurodevelopmental outcomes, family factors, QoL, and resilience. Clinical data were obtained from medical charts. Cerebral MRI was acquired. Specific neurodevelopmental profiles were identified by latent profile analysis and were associated with clinical and family factors, QoL and resilience, and MRI markers. We identified two distinct groups of neurodevelopmental profiles (favorable profile: n = 57, vulnerable profile: n = 43). The favorable profile group had significantly better neurodevelopmental outcome, better family functioning, and better parental mental health compared to the vulnerable profile group. Clinical factors were not significantly associated with profile group. The favorable profile group reported significantly better QoL and resilience and had larger total brain volumes. A positive family environment may be protective for long-term neurodevelopment and may outweigh the role of clinical factors. This study underlines the importance of family-centered care to promote favorable brain development and neurodevelopmental outcome.

40 Trust, belonging and understanding - The experiences of families who use languages other than English (LOE) that are hospitalized on general paediatric inpatient units

Abstract Background Despite recognition that social determinants are critical to health outcomes, many groups, including those with lower incomes, racial/ethnic minorities, and other historically marginalized populations, continue to experience significant social and structural barriers to care. There is need for research that incorporates patient and stakeholder engagement in developing, testing, and disseminating interventions to improve outcomes for patient populations that have been marginalized in the health system. Patients who use a language(s) other than English (LOE) for healthcare communication are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in paediatric hospitals. Canadian census data indicates 12.7% of Canadians predominantly speak a language other than French or English. This work aims to generate knowledge to improve health outcomes for children and families who speak LOE. Objectives (1) To understand the lived experience of families who speak LOE around the hospitalization of their child and (2) To understand the perspectives of patients and families who speak LOE on how the healthcare system can improve care during hospitalization. Design/Methods The premise of this study is participatory research. We designed a qualitative study involving children hospitalized in the General Paediatric Inpatient Unit at the Hospital for Sick Children. The study includes family caregivers of children age 0 to 18 years who identify as speaking LOE. Children and families could speak any language that we were able to obtain interpreter support for. We excluded patients that spoke a traditional Indigenous language as we noted this work required a separate study in partnership with the Indigenous community. We conducted semi-structured virtual individual interviews with children and families post-discharge with a medical interpreter. An interview guide was developed and transcripts were analyzed using thematic analysis. We took several steps to ensure an effective study design given our goals of participatory research including ensuring patient and family engagement throughout the design process. Results 19 families participated in the interviews and 16 different languages were represented amongst our participant groups. Our study is unique in especially unique in it's ability to recruit and interview individuals with so many different primary languages. Our study provides rich insight into opportunities within the paediatric inpatient setting for quality improvement to address the health disparities experienced by patients and families who use LOE for healthcare communication. Our analysis of the interviews identify several themes that provide insight into the lived experience of patients and families who use LOE for healthcare communication. 1) Inconsistent interpreter use affects communication “in the moment” and the ability to develop an “overall understanding” of the current clinical situation and broader healthcare context. Our participants note a "snowball effect" when interpreters are not consistently utilized. 2) In addition to language, multiple additional social factors contribute to an increased sense of vulnerability and modulates how families “trust” the healthcare system. 3) Despite families expressing positive experiences, they noted that they did not, nor expect to feel like they “belonged” within the healthcare system. It is critical to recognize the complex interplay between many factors surrounding our participants’ identities. Though they use a LOE for healthcare, the intersectional marginalization they experience was thoroughly represented during our conversations Conclusion Our research aimed to take a participatory approach to consider the lived experience of patients and families who use LOE for healthcare communication. This work builds on the current literature on patient and family centered care, experiences of families who speak LOE and participatory community-based research in the paediatric hospital settings. Our study's findings support the development of a research and intervention agenda in Canada to improve health outcomes for patients and families with LOE.

Understanding Family Resilience in Young-Onset Dementia: A Multiple Case Study.

Through the lens of family resilience, exploring the experiences of families in adapting to young-onset dementia. Qualitative multiple case study. This study examined the family as a single unit of analysis, focusing on a triad including a person with young-onset dementia, their spouse and their adult child. Three family triads were included. Data collection took place between April 20 and July 4, 2023, in South Korea. Data analysis involved a two-stage process, consisting of a directed content analysis based on the family resilience framework within cases, followed by a cross-case analysis to identify themes and unique patterns across cases. The study identified six key themes: (1) Stressors due to a young-onset dementia diagnosis, (2) perception of the young-onset dementia diagnosis, (3) degree of emotional connection, (4) coping approach to young-onset dementia, (5) availability and utilisation of external resources and (6) patterns of adaptation. Furthermore, our research uncovered the interplay between themes, and how adaptations patterns of families formed either resilient or non-resilient. Our triadic approach uncovered hidden family dynamics, emphasising family-centred care. This study provides insights into unique challenges and diverse adaptation processes, suggesting tailored interventions. This study emphasises the importance of family-centred care in young-onset dementia, recognising all family members as crucial clients. Also, we suggest that healthcare professionals should develop tailored treatment plans that reflect the unique needs of each family. This study presents the unique experiences of young-onset dementia families, laying the foundation for developing effective support strategies that reflect these insights. Additionally, we emphasise the utilisation of external resources and their existence, providing a comprehensive research direction. Our research follows the EQUATOR guidelines, specifically adhering to the COREQ guidelines. No Patient or Public Contribution.

71 Development and validation of the COCINL scale assessing family resilience in the NICU among parents of preterm infants

Abstract Background Given the negative impact of parental distress on preterm infants and their families, examining the role of family resilience in the neonatal intensive care unit (NICU) is a promising avenue for promoting parental mental health while remaining consistent with family-centered care. A tool to assess NICU family resilience is essential to guide care and research, yet none specifically adapted for the neonatal context exists to date according to a recent systematic review. Objectives Therefore, the aim of this study was to develop and validate a new scale, the COCINL scale, designed to measure family resilience in the context of neonatal care among French-speaking parents of preterm infants. Design/Methods This methodological design study was carried out in four successive phases: (I) compilation of an item pool (II) mixed-method evaluation of content validity (clarity, relevance, representativeness) involving 12 experts, (III) pre-testing and electronic administration of the COCINL scale, along with a measure of psychological distress (Kessler-6) and an open-ended self-report question on family resilience to parents of preterm infants (n=88) and (IV) psychometric testing of the COCINL scale (internal consistency, construct validity, exploratory sensitivity and specificity). Parents of preterm infants and experts were recruited by convenience sampling from two urban, level III NICUs. Results From a pool of 112 items, 55 items were favorably evaluated after content validation (S-CVI>0.95). Based on preliminary interitem correlations and internal consistency results, the COCINL scale was shortened to 42 items and divided in four subscales. High internal consistency is also shown in subscales (0.796 to 0.908) and total scale (0.937) Cronbach’s alphas. The COCINL scale displays adequate construct validity, as determined by the Pearson correlation obtained between scores of family resilience and psychological distress (r=-0.236, p=0.027). Strong in between correlations of the four subscales and with the COCINL total score (0.732 to 0.851), further indicated good construct validity. Exploratory sensitivity and specificity analysis revealed the COCINL scale compares to participants' self-reported perception of family resilience (AUC 0.754). Conclusion The COCINL scale has shown strong evidence of validity and internal consistency. Thus, the scale can be recommended for research use as a measure of family resilience in the neonatal context. Still, additional evidence of its validity and reliability should be compiled before clinical use is considered. The COCINL scale could potentially support the development, evaluation and implementation of nursing interventions consistent with the family-centered care approach being promoted in NICUs across Canada and worldwide.

Barriers Perceived by Professionals in Family-Centered Early Intervention Services: A Systematic Review of the Current Evidence

AbstractFamily-centered services are the recommended early intervention approach to develop and deliver services for children with disabilities and their families. This systematic review aims to identify and highlight what barriers service providers in family-centered early intervention perceive that prevent them from providing high-quality services focused on the family and the child's overall well-being. We identified 37 articles that met the selection criteria of the first initial search of 1858 articles. These studies provided insights from both service providers and families. The identified barriers were categorized into eight dimensions: family, child, knowledge, and application of the approach/model, professional beliefs, natural environment, service coordination, working conditions, and current legislation. The main barriers identified were family barriers, insecurities perceived by professionals and difficulties in their ability to provide services, changes in their attitudes and behaviors when they perceive that they are losing their role as experts, lack of knowledge and application of specific practices, and lack of skills needed to engage primary caregivers in natural settings. These findings should inform policy implementation at local and state levels in countries where family-centered service is established in early childhood programs.