One Multidisciplinary Cleft and Craniofacial Team's Experience in Shifting to Family-Centered Care.
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ABSTRACT:
SUBMITTER: Pfeifauf KD
PROVIDER: S-EPMC7299812 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:OBJECTIVE:This study aims to provide an understanding of the ways cleft palate (CP) and craniofacial teams address billing, administration, communication of clinical recommendations, appointment scheduling, and diagnosis-specific protocols. DESIGN:An online clinic administration survey was developed using data from an open-ended telephone questionnaire. The online survey was distributed by e-mail to the American Cleft Palate-Craniofacial Association (ACPA) nurse coordinator electronic mailing list, used regularly by the ACPA and its members to communicate with teams. The response was 34.1% (42/123). Two incomplete records were excluded, as were any inconsistent responses of 3 teams submitting duplicate records. RESULTS:Six (15.8%) of 38 teams do not charge for clinic visits. For all other teams, some or all providers bill individually for services (68.4%) or a single lump sum applies (10.5%). Patients of 34 (89.5%) of 38 teams occasionally or often neglect to schedule or attend follow-up appointments. Twenty-six (66.7%) of 39 team directors were plastic surgeons. Phone is a common method of contacting families for scheduling (60.0%) and appointment reminders (82.5%). Most teams' providers (90.0%) routinely communicate findings to each other during postclinical conference. Most teams saw patients with isolated cleft lip (43.6%), cleft lip and palate (64.1%), or isolated CP (59.0%) annually. CONCLUSIONS:The breadth of strategies team clinic administration strategies warrants further exploration of the variations and their effects on patient-centered outcomes including the quality of life, satisfaction, cost, and resource utilization.
| S-EPMC6488511 | biostudies-literature
Project description:Craniofacial clinics are composed of multidisciplinary teams of providers to deliver coordinated and comprehensive patient care. The coronavirus disease of 2019 (COVID-19) pandemic has disrupted this model, as social distancing guidelines have precluded in-person patient appointments and forced clinics to reconsider their method of care delivery. The University of California, San Francisco, Craniofacial Center has continued to serve patients during this acute period, adopting a hybrid model in which the vast majority of patients are seen through telehealth and a limited number of patients are evaluated in-person. Surveyed patients and families reported high rates of satisfaction, with time savings cited as a particular benefit. Furthermore, most felt comfortable using the video technology required for their appointment. This experience has demonstrated to us that multidisciplinary craniofacial evaluations can be effectively delivered in a telehealth format and has informed our conception of idealized clinic structure. Moving forward, we intend to utilize telehealth visits for selected components of craniofacial evaluations in an effort to maximize efficiency and minimize burden, including addressing barriers to accessing care. Benefits of a hybrid model will include decongestion of clinics and waiting areas, allowing social distancing, addressing clinic space limits, and increased efficiency by eliminating the need for patient and family movement. Demonstration of the safety and efficacy of telehealth visits, combined with regulatory reform that improves reimbursement and allows for appointments across state lines, will be critical for this model to persist beyond the pandemic.
| S-EPMC7544296 | biostudies-literature
Project description:BackgroundIt is anticipated that in due course the burden of emergency care due to COVID-19 infected patients will reduce sufficiently to permit elective surgical procedures to recommence. Prioritizing cleft/craniofacial surgery in the already overloaded medical system will then become an issue. The European Cleft Palate Craniofacial Association, together with the European Cleft and Craniofacial Initiative for Equality in Care, performed a brief survey to capture a current snapshot during a rapidly evolving pandemic.MethodsA questionnaire was sent to the 2242 participants who attended 1 of 3 recent international cleft/craniofacial meetings.ResultsThe respondents indicated that children with Robin sequence who were not responding to nonsurgical options should be treated as emergency cases. Over 70% of the respondents indicated that palate repair should be performed before the age of 15 months, an additional 22% stating the same be performed by 18 months. Placement of middle ear tubes, primary cleft lip surgery, alveolar bone grafting, and velopharyngeal insufficiency surgery also need prioritization. Children with craniofacial conditions such as craniosynostosis and increased intracranial pressure need immediate care, whilst children with craniosynostosis and associated obstructive sleep apnea syndrome or proptosis need surgical care within 3 months of the typical timing. Craniosynostosis without signs of increased intracranial pressure needs correction before the age of 18 months.ConclusionsThis survey indicates several areas of cleft and craniofacial conditions that need prioritization, but also certain areas where intervention is less urgent. We acknowledge that there will be differences in the post COVID-19 response according to circumstances and policies in individual countries.
| S-EPMC7544383 | biostudies-literature
Project description:IntroductionWith 70.8 million people displaced worldwide, there is an increasing need for medical professionals to provide medical care to refugees. Insufficient training on refugee health poses a barrier to effective care delivery.MethodsThis workshop addressed common challenges in providing family-centered pediatric refugee care in community settings as well as barriers related to policy changes. Presentations covered prearrival experiences, medical screening, and trauma-based care. In small groups, participants discussed cases that featured medical, behavioral health, social, and cultural factors impacting the provision of family-centered pediatric care that was culturally respectful and included shared decision-making. After the breakout session, each small group informed the larger group of topics discussed. Facilitators identified themes and reinforced key learning points. At the workshop's conclusion, participants were guided to create their own personalized action plan.ResultsThis workshop was presented at two international conferences to more than 47 participants, including clinicians, nurse practitioners, pediatric residents, and medical students. Evaluations were completed by 34 individuals. Participants' overall comfort level with taking care of refugee patients increased from 3.3 to 4.0 (on a 5-point scale, p = .24) during the 3-hour version of the workshop and from 3.8 to 4.0 (p = .43) in the 1-hour version of the workshop. Mean overall ratings of the 3- and 1-hour workshop versions on conference-administered evaluations were 4.8 and 4.2, respectively, on a 5-point scale.DiscussionsThis workshop was well received and equipped participants with knowledge, tools, and strategies regarding pediatric refugee health in a community setting.
| S-EPMC7666829 | biostudies-literature
Project description:"Health for All" still eludes public health experts despite many approaches to prevent disease and promote health among urban poor. Several key illness factors lie beyond the conventional healthcare boundaries.To examine the effectiveness of family centered approach (FCA) in addressing health and related issues in an urban area of Mangalore, India.A longitudinal study was conducted in Bengre, an outreach centre of Mangalore from June 2011 to November 2013. Family folders were created with pertinent details. Demand generation and health education activities were conducted through two female community health link workers. An FCA package was implemented by medical and nursing interns, under supervision, to address the priority issues. Effect was assessed by comparing their practices and service utilization before and after the study.About 809 families participated in this study. Social, cultural, and religious factors were responsible for viciousness of malaria and maternal and child health issues. FCA improved their perceptions and practices towards health and related issues. Significant (P < 0.05) and sustained hike in service utilization was evident.FCA exposes key illness factors beyond the conventional care, eases need based healthcare implementation, and provides feasible and enduring solutions. Community involvement makes it more practicable.
| S-EPMC4322852 | biostudies-other
Project description:ObjectivesImproving family-centered outcomes is a priority in oncologic critical care. As part of the Intensive Care Unit (ICU) Patient-Centered Outcomes Research Collaborative, we implemented patient- and family-centered initiatives in a comprehensive cancer center.MethodsA multidisciplinary team was created to implement the initiatives. We instituted an open visitation policy (OVP) that revamped the use of the two-way communication boards and enhanced the waiting room experience by hosting ICU family-centered events. To assess the initiatives' effects, we carried out pre-intervention (PRE) and post-intervention (POST) family/caregiver and ICU practitioner surveys.ResultsA total of 159 (PRE = 79, POST = 80) family members and 147 (PRE = 95, POST = 52) ICU practitioners participated. Regarding the decision-making process, family members felt more included (40.5% vs. 68.8%, p < 0.001) and more supported (29.1% vs. 48.8%, p = 0.011) after the implementation of the initiatives. The caregivers also felt more control over the decision-making process in the POST survey (34.2% vs. 56.3%, p = 0.005). Although 33% of the ICU staff considered OVP was beneficial for the ICU, 41% disagreed and 26% were neutral. Only half of them responded that OVP was beneficial for patients and 63% agreed that OVP was beneficial for families. Half of the practitioners agreed that OVP resulted in additional work for staff.Significance of resultsOur project effectively promoted patient- and family-centered care. The families expressed satisfaction with the communication of information and the decision-making process. However, the ICU staff felt that the initiatives increased their work load. Further research is needed to understand whether making this project universal or introducing additional novel practices would significantly benefit patients admitted to the ICU and their family.
| S-EPMC10030873 | biostudies-literature
Project description:ObjectivesPatients speaking a primary language other than English face barriers to equitable care, particularly patient-provider communications. There is no gold standard for providing inpatient medical interpretation on family-centered rounds (FCR). We aimed to implement simultaneous, in-person interpretation of FCR for Spanish-speaking families and hypothesized improved satisfaction in care.MethodsIn-person, Spanish Equipment-Assisted Simultaneous Medical Interpretation (EASMI) was implemented in March 2018 on FCR. Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS) experience scores on communication domains were analyzed for Spanish and English-speaking families pre- (n = 118) and postimplementation (n = 552). Postimplementation, we conducted medical team surveys (n = 104) and semistructured interviews with Spanish-speaking families (n = 25) to determine satisfaction with interpretation modalities (phone, video, and EASMI).ResultsSpanish-speaking families exhibited statistically significant improvements in Child HCAHPS top box scores compared to English-speaking families in multiple communication and informed care-related domains. For example, "How often did your child's doctors explain things to you in a way that was easy to understand?" top box scores improved from 58% to 95% for Spanish-speaking families, compared to 85% to 83% for English speakers, with the differential effect of the intervention showing statistical significance (P = .001). Medical team surveys demonstrated high satisfaction with EASMI. Qualitative themes from interviews and open-ended survey responses emphasized multiple care benefits with EASMI, including a perceived reduction of communication errors and increased family participation.ConclusionsEASMI was associated with significant improvements in Child HCAHPS scores in communication domains and increased medical team and family members' satisfaction with interpretation. EASMI presents a novel method for equitable FCR for Spanish-speaking families.
| S-EPMC10281615 | biostudies-literature
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.
| S-EPMC5549465 | biostudies-other
Project description: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 socioeconomic status. Families identified the following challenges that indicated a gap in mutual trust and power sharing: conflict with or lack of knowledge about social work; staff judgment of, or unwillingness to address barriers to family presence at bedside; need for nurse continuity and meaningful relationship with nurses and inconsistent access to translation services. These unmet needs for partnership in care or support were particularly experienced by parents of color or of low socioeconomic status.
| S-EPMC8106872 | biostudies-literature
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.
| S-EPMC4591613 | biostudies-other