Actions and processes that patients, family members, and physicians associate with patient- and family-centered care.

BACKGROUND: Patient- and family-centered care (PFCC) is increasingly linked to improved communication, care quality, and patient decision making. However, in order to consistently implement and study PFCC, health care systems and researchers need a solid evidentiary base. Most current definitions and models of PFCC are broad and conceptual, and difficult to translate into measurable behaviors and actions. This paper provides a brief overview of all actions that focus group respondents associated with PFCC in ambulatory (outpatient) care settings and then explores actions associated with the concept of "dignity and respect" in greater detail. METHODS: We conducted nine focus groups with patients, family members, and physicians in three metropolitan regions across the United States. Group discussions were transcribed and analyzed using a thematic analysis approach. RESULTS: We identified 14 domains and 47 specific actions that patients, family members, and physicians associate with PFCC. In addition to providing a detailed matrix of these domains and actions, this paper details the actions associated with the "dignity and respect" concept. Key domains identified under "dignity and respect" include: 1) building relationships, 2) providing individualized care, and 3) respecting patients' time. Within these domains we identified specific actions that break down these abstract ideas into explicit and measurable units such as taking time, listening, including family, and minimizing wait times. We identified 9, 6, and 3 specific actions associated, respectively, with building relationships, providing individualized care, and respecting patients' time. CONCLUSIONS: Our work fills a critical gap in our ability to understand and measure PFCC in ambulatory care settings by breaking down abstract concepts about PFCC into specific measurable actions. Our findings can be used to support research on how PFCC affects clinical outcomes and develop innovative tools and policies to support PFCC.

Reinforcing the essential role of families through first impressions of the physical environment.

The physical environment in all of its aspects of space, structure, millwork, furniture, materials, flow, signage, and art has great potential to set a positive tone and invitation for families to be partners in the care of their infants. This article describes design strategies that create a series of positive welcoming first impressions throughout a NICU to support family caregiving and participation as parents of their infant and essential members of the care team.

Promoting Patient and Family Partnerships in Ambulatory Care Improvement: A Narrative Review and Focus Group Findings.

INTRODUCTION: Ambulatory practices that actively partner with patients and families in quality improvement (QI) report benefits such as better patient/family interactions with physicians and staff, and patient empowerment. However, creating effective patient/family partnerships for ambulatory care improvement is not yet routine. The objective of this paper is to provide practices with concrete evidence about meaningfully involving patients and families in QI activities. METHODS: Review of literature published from 2000-2015 and a focus group conducted in 2014 with practice advisors. RESULTS: Thirty articles discussed 26 studies or examples of patient/family partnerships in ambulatory care QI. Patient and family partnership mechanisms included QI committees and advisory councils. Facilitators included process transparency, mechanisms for acting on patient/family input, and compensation. Challenges for practices included uncertainty about how best to involve patients and families in QI. Several studies found that patient/family partnership was a catalyst for improvement and reported that partnerships resulted in process improvements. Focus group results were concordant. CONCLUSION: This paper describes emergent mechanisms and processes that ambulatory care practices use to partner with patients and families in QI including outcomes, facilitators, and challenges. FUNDING: Gordon and Betty Moore Foundation.

Hospitalización domiciliaria en niños y adolescentes con necesidades especiales de atención en salud (NANEAS): perspectivas financieras en hospital de alta complejidad, Chile / Home hospitalization in children and youth with special health care needs (cyshcn): financial perspectives in hospital de alta complexidad, Chile

Introducción. La ausencia de hospitalización domiciliaria (HD) de niños y adolescentes con necesidades especiales en salud de alta complejidad (NANEAS) genera hospitalizaciones prolongadas en la atención cerrada (AC). Objetivo: Comparar el gasto estimado de HD de NANEAS de alta complejidad versus costo real del mismo paciente en AC y su impacto en la producción hospitalaria. Métodos: Estudio descriptivo y comparativo entre costos de ambas modalidades de hospitalización de NANEAS de alta complejidad. De enero a diciembre 2016 se registraron hospitalizaciones NANEAS no oncológicos del Servicio de Pediatría (SP) según norma del Ministerio de Salud-Chile (MINSAL). Se clasificó para grupos clínicos y consumos similares de recursos según grupos relacionados al diagnóstico (GRD). Para evaluar el impacto en la producción hospitalaria la estancia fue ajustada y se realizó un análisis financiero de ambas modalidades (AC) y (HD). Resultados: De 3690 egresos, 126 (3,4%) se relacionaron a 27 NANEAS, la edad promedio fue 4,6 años (± 5 DS) con dependencias tecnológicas para vivir. La estancia media NANEAS fue 16 días, comparada con 5,9 de los pacientes sin necesidades especiales en salud. Las estancias NANEAS llegaron a 2017 días (8,6%). Prescindir de los egresos NANEAS hubiera aportado 320 egresos adicionales y su HD habría ahorrado US $15/día por paciente, que para el total de estancias consumidas habría sido un ahorro anual de US $ 29 170. Conclusiones: La HD tiene un costo estimado menor a la AC de NANEAS de alta complejidad, mejora la productividad hospitalaria y libera camas críticas con inversión financieramente viable.

Introduction. The absence of home hospitalization (HH) of children and youth with special health care needs (CYSHCN) generates prolonged hospitalizations in closed care (CC). Objective: To compare the estimated cost of HH of high complexity CYSHCN versus the actual cost of the same patient in CC and its impact on hospital production. Methods: Descriptive and comparative study between costs of both hospitalization modalities of high complexity CYSHCN. From January to December 2016, non-oncological CYSHCN hospitalizations were registered by the Pediatric Service (PS) according to the Ministry of Health-Chile (MINSAL) norm. It was classified for clinical groups and similar consumption of resources according to groups related to diagnosis (DRG). The stay was adjusted, and financial analysis of both modalities (CC) and (HH) was performed to evaluate the impact on hospital production. Results: Of 3690 discharges, 126 (3.4%) were related to 27 CYSHCN, the average age was 4.6 years (± 5 SD) with technological dependencies to live. The mean CYSHCN stay was 16 days, compared with 5.9 for patients without special health needs. CYSHCN stays reached 2017 days (8.6%). Disregarding the CYSHCN discharges would have contributed 320 additional discharges, and his HH would have saved US $ 15 / day per patient, which for the total number of stays consumed would have been an annual saving of US $ 29170. Conclusion: HH has an estimated cost lower than the CA of high complexity CYSHCN, improves hospital productivity, and frees critical beds with financially viable investment.

Designing the neonatal intensive care unit for optimal family involvement.

The design of a new neonatal intensive care unit provides an opportunity to ensure that the new facility best meets the needs of the infants and families whom the unit serves. In design planning,administrators, staff, family members, and the architect must work together in a self-education process that entails examining current design standards, exploring exemplary facilities at other institutions,defining the priorities and needs of infants, families, and staff, and deciding how to respond to them. The involvement of family members in this important work can help ensure that the facility is responsive to families and supports the family as the primary caregiver and decision maker for the infant. Such an environment will lead to improved health and developmental outcomes for infants and greater family and staff satisfaction.

Collaborating with patients and their families.

Patient- and family-centered care is a healthcare approach that emphasizes collaboration among patients, families, and healthcare providers. The key concepts of patient- and family-centered care can be applied in any healthcare setting to enhance patient safety, reduce the risk of medical errors, improve risk management processes, and create an organizational culture supportive of risk managers and open, honest communication.

Transition to home from the newborn intensive care unit: applying the principles of family-centered care to the discharge process.

Increasingly newborn intensive care units (NICUs) are embracing family-centered care principles. Family-centered newborn intensive care requires that families are welcomed as partners in caregiving and decision making. Traditionally, discharge planning has been done without significant family involvement. In fact, parent participation in caregiving may still be limited until discharge is imminent. By increasing parental involvement in caregiving throughout hospitalization and working with families to facilitate the discharge process, parents may emerge from the NICU experience with increased competence and confidence in infant caregiving. This article reviews common discharge practices and processes in the NICU and offers strategies to assist nurses in integrating a family-centered approach into discharge planning.

Development and dissemination of potentially better practices for the provision of family-centered care in neonatology: the family-centered care map.

OBJECTIVE: Family-centered care has become integral to the provision of quality neonatal intensive care. However, practices that reflect the core principles of family-centered care have not been described fully in the literature or implemented and evaluated consistently within newborn intensive care. The objective of this study was to create a family-centered care map that enhances the ability of the health care team to work with families to coordinate and deliver care in a holistic manner to meet the developmental, physical, and psychosocial needs of NICU patients and their families. METHODS: Potentially better practices were developed for sequential clinical phases by using standardized methods. These included focus groups with families, brainstorming sessions with staff, literature review, and input from established family advisory groups and family-centered care experts. Potentially better practices then were integrated into the family-centered care map that was configured in a Web-based format. Overall utility will be evaluated by determining the effect of the family-centered care map on length of stay, parental satisfaction, and family-centered care beliefs and practices among NICU staff. RESULTS: Sixty-three potentially better practices were identified for 7 clinical phases and 3 variations that were believed to characterize the clinical course of a typical NICU patient. A prototype of the Web-based family-centered care map that illustrates the clinical phases with links to the related potentially better practices, operational processes, and case studies was created. Baseline data from a care provider survey, from a family satisfaction survey, and on length of stay have been collected. CONCLUSIONS: Quality improvement methods and collaboration among 3 centers led to the development of an innovative Web-based resource to assist individual care providers and family advisors to provide comprehensive family-centered care to infants and families. Implementation of the family-centered care map has potential to affect positively the quality of newborn intensive care and lead to improved long-term outcomes.

Patient- and family-centered perinatal care: partnerships with childbearing women and families.

Providing patient- and family-centered care is not a simple endeavor. It requires a transformation in organizational culture that is reflected in a myriad of details at the departmental, clinical, and individual provider and patient levels. Patient- and family-centered practitioners know that it is not a recipe or formula of specific practices, but an evolving approach that guides policy and program development, facility design, decision making, and daily interactions throughout the healthcare system. Today, momentum for patient- and family-centered care continues to build. It is supported by a growing body of research and by prestigious organizations that are committed to involve patients and families in care and in the redesign of healthcare for the 21st century to meet the recommendations of the IOM report. This article outlines the concepts of patient- and family-centered care and describes how they link with and differ from traditional concepts of family-centered maternity care. Partnerships with childbearing women and their families in clinical settings and in healthcare redesign that enhance quality, safety, and experience of care are described.

Implementation and case-study results of potentially better practices for family-centered care: the family-centered care map.

OBJECTIVE: The objective of this study was to enhance the ability to coordinate and deliver care in a holistic manner, through a family-centered care map, so that the developmental, physical, and psychosocial needs of the infant and family are met. METHODS: A Web-based map was based on 7 distinct clinical phases with 3 variations of an infant's course through a NICU. Sixty-three potentially better practices were identified and 7 potentially better practices were implemented through case studies. RESULTS: Measures of family satisfaction revealed improvements in delivery of family-centered care. Increases in discharge growth parameters for extremely low birth weight infants were demonstrated. Length of stay for very low birth weight infants decreased from 73 to 60 days in Vermont. CONCLUSIONS: The collaborative process enhances identification of potentially better practices and results in both qualitative and quantitative improvements in family-centered care.

Evaluation and development of potentially better practices for improving family-centered care in neonatal intensive care units.

OBJECTIVE: Technological and scientific advances have progressively decreased neonatal morbidity and mortality. Less attention has been given to meeting the psychosocial needs of the infant and family than on meeting the infant's physical needs. Parents' participation in making decisions and caring for their child has often been limited. Environments designed for efficient technological care may not be optimal for nurturing the growth and development of sick neonates or their families. Eleven centers collaborating on quality improvement tried to make the care of families better by focusing on understanding and improving family-centered care. METHODS: Through internal process analysis, review of the evidence, collaborative learning, and benchmarking site visits to centers of excellence in family-centered care, a list of potentially better practices was developed. Choice of which practices to implement and methods of implementation were center specific. Improvement goals were in 3 areas: parent-reported outcomes, staff beliefs and practices, and clinical outcomes in length of stay and feeding practices. Measurement tools for the first 2 areas were developed and pilots were conducted. RESULTS: Length of stay and feeding outcomes were not different before the collaboration (1998) and at the formal end of the collaboration (2000). CONCLUSIONS: Prospective parent-reported outcomes are being collected, and the staff beliefs and practices questionnaire will be repeated in all centers to determine the impact of the project in those areas.