Acceptability of a family-centered newborn care model among providers and receivers of care in a Public Health Setting: a qualitative study from India.
ABSTRACT: BACKGROUND:Family-centered care (FCC), based on collaborative participation of the family along with a team of health care providers, is found to increase the well-being of sick infants in neonatal critical care units. Over the last 4 years, the neonatal unit of Dr. Ram Manohar Lohia Hospital in Delhi has innovated and developed an implementation framework for FCC. This qualitative study assessed the acceptability of family-centered care among providers and family members of neonates to identify gaps and challenges in implementation. METHODS:In-depth interviews were conducted among a purposive sample of twelve family members of admitted neonates and six providers to examine their perceptions and experiences regarding FCC. RESULTS:Family members and providers expressed a positive perception and acceptance of FCC based on the competencies and knowledge acquired by parents and other caregivers of essential newborn care. Family members reported being satisfied with the overall health care experience due to the transparency of care and allowing them to be by their baby's bedside. Limitations in the infrastructure or lack of facilities at the public hospital did not seem to dilute these positive perceptions. Providers also perceived FCC as a good practice to be continued in spite of concerns around sharing of nursery space with parents, the need for constant vigilance of parents' practices in handling of their newborns, and the need for separate, designated nursing staff for FCC. CONCLUSION:Both providers and receivers of neonatal care found FCC to be an acceptable form of care. Providers identified challenges and suggested possible solutions, such as need of periodic provider sensitization on FCC, improved staff organization, and provision of mother-friendly facilities to enable her to provide around-the-clock care by her baby's bedside. Overcoming these challenges would allow for better integration of FCC within general clinical care in neonatal care units.
Project description:OBJECTIVE: The objective of the study was to assess whether a targeted intervention improved the satisfaction of neonatal parents with primary medical provider communication. STUDY DESIGN: The study design was a survey assessment of parents in a neonatal intensive care unit regarding their satisfaction with physician and nurse practitioner communication. Serial cohorts were surveyed before and after an intervention, including educating providers about family communication, distributing contact cards to families and showing a poster of providers in the unit. RESULT: More subjects in the post-intervention cohort (n=33) were satisfied (95%) with provider communication than in the pre-intervention cohort (n=50, 74%; P<0.01). Parents who reported talking with a provider in the previous 7 days were more satisfied than parents who did not (P<0.001). After the intervention, fewer families (36 versus 65%) reported a desire for more frequent provider contact (P<0.01). CONCLUSION: A targeted intervention improved parent satisfaction with provider communication. Improving the quality and quantity of parent-provider communication increased parent satisfaction with communication with their baby's medical providers.
Project description:Frequent and sensitive communication from neonatal staff is important to alleviate parental stress and to ensure that parents understand their baby's condition and progress. It also consequently empowers and involves parents in their baby's care. A lack of regular and informative communication from neonatal staff is a common reason for parental complaint. We sought to assess whether the implementation of a baby diary used as a communication tool would improve parent-staff communication and optimise the parental experience of neonatal care. In this study, parents and carers of babies on our neonatal unit were invited to complete a questionnaire to assess their level of satisfaction with communication by neonatal staff before and after the implementation of the diaries. The diary was designed to act as an aid to improve communication to parents about their baby and thereby complementing face-to face communication and encouraging parental involvement. The study design was a retrospective parental satisfaction questionnaire based on the Department of Health  and the National Institute for Health and Care Excellence (NICE)  quality standards for specialist neonatal care on communication and parental involvement (n=44, response rate 57%). Following implementation of the diary, the questionnaire was repeated on two occasions: one month post implementation (n=17, response rate 23%) and 15 months post implementation (n=44, response rate 65%). More parents in the post-intervention cohort felt they were receiving regular communication from staff, that their questions and concerns were being addressed, and felt involved in their baby's care than in the pre-intervention cohort. In addition, 100% of parents said they liked reading the diary and 94% felt it added to their understanding of how their baby was doing. Our project demonstrates an improvement in parents' satisfaction with communication from neonatal staff following the implementation of individual baby diaries. The diary is a simple, practical, and cost-effective tool to enhance communication between parents and staff in a neonatal unit.
Project description:The experience of parents in helping their children access and use mental health services is linked to service outcomes. Parent peer support service, based on the principles of family-centered care, is one model to improve parent experience and engagement in services. Yet, little is known about how best to integrate this service into the existing array of mental health services. Integration is challenged by philosophical differences between family-centered services and traditional children's treatment services, and is influenced by the organizational social contexts in which these services are embedded. We describe an organizational and frontline team intervention that draws on research in behavior change, technology transfer, and organizational social context for youth with serious emotional disturbance. The two-pronged intervention, called FAMILY (FCC and ARC Model to Improve the Lives of Youth) is guided by the evidence-based Availability, Responsiveness, and Continuity (ARC) organizational intervention, targeted primarily at program and upper management leadership and includes a family-centered care (FCC) intervention, targeted at frontline providers. The approach employs multilevel implementation strategies to promote the uptake, implementation and sustainability of new practices. We include examples of exercises and tools, and highlight implementation challenges and lessons learned in facilitating program and staff level changes in family-centered service delivery.
Project description:BACKGROUND: There are limited data to inform the choice between parental presence at clinical bedside rounds (PPCBR) and non-PPCBR in neonatal intensive care units (NICUs). METHODS: We performed a single-centre, survey-based, crossed-over randomised trial involving parents of all infants who were admitted to NICU and anticipated to stay >11 days. Parents were randomly assigned using a computer-generated stratified block randomisation protocol to start with PPCBR or non-PPCBR and then crossed over to the other arm after a wash-out period. At the conclusion of each arm, parents completed the 'NICU Parental Stressor Scale' (a validated tool) and a satisfaction survey. After completion of the trial, we surveyed all healthcare providers who participated at least in one PPCBR rounding episode. We also offered all participating parents and healthcare providers the opportunity to partake in a focus group discussion regarding PPCBR. RESULTS: A total of 72 parents were enrolled in this study, with 63 parents (87%) partially or fully completing the trial. Of the parents who completed the trial, 95% agreed that parents should be allowed to attend clinical bedside rounds. A total of 39 healthcare providers' surveys were returned and 35 (90%) agreed that parents should be allowed to attend rounds. Nine healthcare providers and 8 parents participated in an interview or focus group, augmenting our understanding of the ways in which PPCBR was beneficial. CONCLUSIONS: Parents and healthcare providers strongly support PPCBR. NICUs should develop policies allowing PPCBR while mitigating the downsides and concerns of parents and healthcare providers such as decreased education opportunity and confidentiality concerns. TRIAL REGISTRATION NUMBER: Australia and New Zealand Clinical Trials Register number, ACTRN12612000506897.
Project description:PROBLEM:The Institute for Patient- and Family-Centered Care's (IPFCC) definition of family-centered care (FCC) includes the following four core concepts: respect and dignity, information sharing, participation, and collaboration. To date, research has focused on the provider experience of FCC in the PICU; little is known about how parents of children hospitalized in the pediatric intensive care unit (PICU) experience FCC. ELIGIBILITY CRITERIA:Articles were included if they were published between 2006 and 2016, included qualitative, quantitative, or mixed methods results, related to care received in a PICU, and included results that were from a parent perspective. SAMPLE:49 articles from 44 studies were included in this review; 32 used qualitative/mixed methods and 17 used quantitative designs. RESULTS:The concepts of respect and dignity, information sharing, and participation were well represented in the literature, as parents reported having both met and unmet needs in relation to FCC. While not explicitly defined in the IPFCC core concepts, parents frequently reported on the environment of care and its impact on their FCC experience. CONCLUSIONS:As evidenced by this synthesis, parents of critically ill children report both positive and negative FCC experiences relating to the core concepts outlined by the IPFCC. IMPLICATIONS:There is a need for better understanding of how parents perceive their involvement in the care of their critically ill child, additionally; the IPFCC core concepts should be refined to explicitly include the importance of the environment of care.
Project description:BACKGROUND:Family Centered Care (FCC) has been widely adopted as the framework for caring for infants in the Neonatal Intensive Care Unit (NICU) but it is not uniformly defined or practiced, making it difficult to determine impact. Previous studies have shown that implementing the Family Integrated Care (FICare) intervention program for preterm infants in the NICU setting leads to significant improvements in infant and family outcomes. Further research is warranted to determine feasibility, acceptability and differential impact of FICare in the US context. The addition of a mobile application (app) may be effective in providing supplemental support for parent participation in the FICare program and provide detailed data on program component uptake and outcomes. METHODS:This exploratory multi-site quasi-experimental study will compare usual FCC with mobile enhanced FICare (mFICare) on growth and clinical outcomes of preterm infants born at or before 33?weeks gestational age, as well as the stress, competence and self-efficacy of their parents. The feasibility and acceptability of using mobile technology to gather data about parent involvement in the care of preterm infants receiving FCC or mFICare as well as of the mFICare intervention will be evaluated (Aim 1). The effect sizes for infant growth (primary outcome) and for secondary infant and parent outcomes at NICU discharge and three months after discharge will be estimated (Aim 2). DISCUSSION:This study will provide new data about the implementation of FICare in the US context within various hospital settings and identify important barriers, facilitators and key processes that may contribute to the effectiveness of FICare. It will also offer insights to clinicians on the feasibility of a new mobile application to support parent-focused research and promote integration of parents into the NICU care team in US hospital settings. TRIAL REGISTRATION:ClinicalTrials.gov, ID NCT03418870. Retrospectively registered on December 18, 2017.
Project description:This study tested the effect of a neonatal-bereavement-support DVD on parental grief after their baby's death in a Neonatal Intensive Care Unit compared with standard bereavement care (controls). Following a neonatal death, the authors measured grief change from a 3- to 12-month follow-up using a mixed-effects model. Intent-to-treat analysis was not significant, but only 18 parents selectively watched the DVD. Thus, we subsequently compared DVD viewers with DVD nonviewers and controls. DVD viewers reported higher grief at 3-month interviews compared with DVD nonviewers and controls. Higher grief at 3 months was negatively correlated with social support and spiritual/religious beliefs. These findings have implications for neonatal-bereavement care.
Project description:INTRODUCTION: Communication is one of the key principles in Family-Centered Care (FCC). Studies have shown some drawbacks in communication between families and nurses. Therefore, the present study aimed to recognize the obstacles against nurse-family communication in FCC in Neonatal Intensive Care Unit (NICU). METHODS: This qualitative study was conducted on 8 staff nurses in 2 NICUs affiliated to Shiraz University of Medical Sciences selected through purposive sampling. The data were collected using 8 deep semi-structured interviews and 3 observations. Then, they were analyzed through inductive content analysis. RESULTS: Data analysis resulted in identification of 3 main categories and 7 subcategories. The first category was organizational factors with 2 subcategories of educational domain (inadequate education, lack of a system for nursing student selection, and poor professionalization) and clinical domain (difficult working conditions, lack of an efficient system for ongoing education and evaluation, and authoritarian management). The second category was familial factors with socio-cultural, psychological, and economic subcategories. The last category was the factors related to nurses with socio-cultural and psycho-physical subcategories. CONCLUSION: Identification of the obstacles against nurse-family communication helps managers of healthcare systems to plan and eliminate the challenges of effective communication. Besides, elimination of these factors leads to appropriate strategies in NICUs for effective application of FCC.
Project description:Conducting clinical trials with pre-term or sick infants is important if care for this population is to be underpinned by sound evidence. Yet approaching parents at this difficult time raises challenges for the obtaining of valid informed consent to such research. This study asked: what light does the empirical literature cast on an ethically defensible approach to the obtaining of informed consent in perinatal clinical trials?A systematic search identified 49 studies. Analysis began by applying philosophical frameworks which were then refined in light of the concepts emerging from empirical studies to present a coherent picture of a broad literature.Between them, studies addressed the attitudes of both parents and clinicians concerning consent in neonatal trials; the validity of the consent process in the neonatal research context; and different possible methods of obtaining consent.Despite a variety of opinions among parents and clinicians there is a strongly and widely held view that it is important that parents do give or decline consent for neonatal participation in trials. However, none of the range of existing consent processes reviewed by the research is satisfactory. A significant gap is evaluation of the widespread practice of emergency 'assent', in which parents assent or refuse their baby's participation as best they can during the emergency and later give full consent to ongoing participation and follow-up. Emergency assent has not been evaluated for its acceptability, how such a process would deal with bad outcomes such as neonatal death between assent and consent, or the extent to which late parental refusal might bias results. This review of a large number of empirical papers, while not making fundamental changes, has refined and developed the conceptual framework from philosophy for examining informed consent in this context.
Project description:To explore existing barriers and challenges to Early Intervention (EI) referral, enrollment, and service provision for very low birth weight (VLBW; <1500 g) infants.We conducted 10 focus groups with parents of VLBW children (n = 44) and 32 interviews with key informants from EI (n = 7), neonatal intensive care units (n = 17), and outpatient clinics (n = 8) at 6 sites in 2 states. We used grounded theory to identify themes about gaps in services.Both parents and providers found EI helpful. However, they also identified gaps in the current EI system at the levels of eligibility, referral, family receptivity, and service provision and coordination with medical care. Inadequate funding and variable procedures for evaluation may affect children's eligibility. Referrals can be missed as a result of simple oversight or communication failure among hospitals, EI, and families; referral outcomes often are not formally tracked. Families may not be receptive to services as a result of wariness of home visits, social stressors, denial about potential developmental delays, or lack of understanding of the benefits of EI. Once a child is deemed eligible, services may be delayed or terminated early, and EI providers may have little specialized training. Communication and coordination with the child's medical care team is often limited.Systemic barriers, including funding and staffing issues, state and federal regulations, and communication with families and medical providers, have led to gaps in the EI system. The chronic care model may serve as a framework for integrating community-based interventions like EI with medical care for VLBW children and other vulnerable populations.