Delivery Of Family-centered Care Research Articles

Six ways to get a grip on patient and family centered care during the undergraduate medical years.

Patient and family-centered care and patient engagement practices have strong evidence-based links with quality and safety for both patients and health care providers. Expectations for patient and family-centered care have advanced beyond hearing the patient perspective and taking patient wishes into account. A participatory approach including patients as partners in their care journey is expected, but attitudes toward patient and family-centered care remain barriers in practice. As health service organizations shift from a system-centered approach to a patient and family-centered care delivery model, black ice occurs. In this Black Ice article, we present some practical tips for medical educators to improve opportunities for medical students to develop knowledge, attitudes, and skills that support patient and family-centered care.

Developing a Burn-Specific Family-Centered Care (BS-FCC) Framework: A Multi-Method Study

A burn has been described as a family injury warranting the delivery of family-centered care (FCC) across the continuum of burns management. This assertion notwithstanding, only limited progress has been made to develop and implement FCC interventions in the burn unit. As a starting point, this study sought to formulate a tentative framework to underpin FCC in burn care. A multi-method design comprising an umbrella review and the secondary data analysis of qualitative datasets was employed. Following these, the findings were merged and aligned to the Universal Model of FCC to formulate the burn-specific FCC framework. For the umbrella review, four review articles met the criteria for inclusion. Following a data synthesis of the review findings and their integration with the qualitative dataset, four meta-themes that encapsulate the shared needs/concerns of family members of both pediatric and adult burn survivors emerged: (1) psychosocial concerns, (2) issues relating to role changes, (3) logistical concerns, and (4) requiring information. These issues were mapped to the following components of the Universal Model of FCC: family support, education, collaboration, and communication. All these are underpinned by dedicated policies, procedures, and consideration of the family context. Testing and further empirical work are needed to refine and implement the framework across the continuum of burn management.

Parent and staff perceptions of patient and family-centred care in a Brazilian paediatric's hospital: Quantitative study.

Patient and family-centred care (PFCC) is a healthcare model has been acknowledged as the central pillar in the paediatric health care that recognizes the family's role and experience in the health care delivery. This study investigated and compared the perception of PFCC from the perspective of staff and parents of hospitalized children and adolescents. A quantitative and comparative cross-sectional survey was used in a convenience sample of 105 staff and 116 parents, who completed the Brazilian versions of the Perceptions of Family Centred Care-Parent and Staffquestionnaires, with additional questions on their characteristics. Descriptive and analytical statistics were used, as well as the Kruskal-Wallis and Mann-Whitney tests and Spearman's correlation coefficient. Both parents and staff responses were positive and parents had significantly higher scores for 19 of the 20 items (p < 0.001). The item related to parental participation did not show any significant difference between the groups. The positive perception of PFCCfor both groups is consistent with recommendations for expanded care that includes patient and family in healthcare settings. Parents' perception was more positive than staff perceptions of their delivery of family-centred care in hospital. The lowest score for the parent support subscale in both groups requires investigation.

Caregiver Perspectives on Telemedicine for Postdischarge Care for Children With Medical Complexity: A Qualitative Study

The objectives of this study were to describe the perspectives of caregivers of children with medical complexity on telemedicine video visits (TMVV) for posthospitalization care and determine whether TMVV may be a viable alternative to in-person follow-up. Our qualitative descriptive study included semistructured telephone interviews with 12 caregivers. Data analysis was conducted using an adapted Colaizzi's descriptive phenomenological method for thematic construction. Results were organized into four themes describing caregivers' experiences with TMVV: (1) promoted caregiver self-efficacy and sense of independence; (2) TMVV as convenient, cost-effective, comprehensive, and acceptable; (3) supported caregiver decision-making and problem-solving; and (4) fostered delivery of family-centered care. Although in-person visits are necessary for some circumstances, TMVV can serve as a convenient and acceptable alternative for posthospitalization follow-up in children with medical complexity. Overall, caregivers in this study were satisfied with the quality of care and individualized experience of TMVV.

Global child and family-centered care fellowship, education and mentorship for pediatric healthcare professionals: A literature review

Child- and family-centered care (FCC) is increasingly accepted and implemented to optimize the healthcare experience for patients, their families, and healthcare professionals. Standish Foundation for Children, a 501(c)(3) non-profit, has designed and piloted a fellowship to educate pediatric healthcare professionals in FCC & psychosocial care via an inquiry and mentorship model in Tbilisis, Georgia. This review aimed to evaluate and synthesize existing literature on psychosocial and FCC mentorship for pediatric healthcare professionals in four parts: ongoing need, effects on healthcare professionals, effects on children and their families and/or caregivers, and in cross-country healthcare settings. Reviewers searched open-source databases for articles in English published between 2010 and 2021. Opportunities for psychosocial and FCC skills development is both desired and needed by pediatric healthcare professionals, a viewpoint shared by families of pediatric patients. Existing mentorship models varied in design but overall improved provider confidence and ability to provide FCC in clinical settings. Some support for these interventions improving patient and family clinical outcomes is documented, although further research is necessary. In cross-country healthcare settings with varying resource levels, clinical mentorship in general can improve quality and delivery of care without requiring entirely new approaches. This review supports psychosocial mentorship models as an effective tool for child- and family-centered care delivery. Future research into long-term professional and patient outcomes, FCC impact on pediatric patients with non-traditional family units, and in cross-country settings is recommended to gain a more comprehensive understanding of how FCC can improve quality of healthcare.

Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity.

Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socioeconomic vulnerabilities often rely on the involvement of family and friends in managing their health, but the role of these care partners in health information technology is largely undefined and poorly understood. This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery.

Caregiver perspectives of dialysis initiation for children with kidney disease: a qualitative study.

To better support family-centered care surrounding dialysis initiation, greater understanding of caregiver experience is necessary. Using thematic analysis, we conducted a secondary analysis of semi-structured interview data from a qualitative study of caregivers of children receiving dialysis recruited from 3 pediatric centers. Prominent themes in caregiver experience of caring for a child initiating dialysis were identified. Thirty-five caregivers participated. Three major themes emerged from qualitative analysis: (1) parenting disrupted- caregivers experienced an acute disruption in their parenting role due to the unexpected, emergent circumstances and vast information accompanying their child's diagnosis; (2) redefining parenting- caregivers sought to reestablish their innate parental role and foster their evolving medical provider role through reassurance that their child could survive, communication with the medical team, and engaging in care plan development; and (3) leveraging dual identities - to positively impact their child's experience and enable flourishing, caregivers leveraged their established caregiver role and newly realized medical provider role through voicing their perspectives, watching over their child's care, and preparing for future changes in their child's health. If caregivers' evolution was not nurtured and enabled, acute fluctuations in their child's care could contribute to future disruption and need to restore their parental role. However, if caregiver development was fostered, caregivers acquired increased ability to prepare for vacillations in their child's care. Improving delivery of family-centered care and support of caregivers at dialysis initiation will require directed efforts by nephrology care teams to foster caregiver evolution and resilience and respond to the family's changing experience of kidney disease. A higher resolution version of the Graphical abstract is available as Supplementary information.

Stress and burnout influence NICU healthcare professionals’ decision-making on family-centered care delivery: An international survey

The Neonatal Intensive Care Unit (NICU) environment is complex with competing demands. Health care professionals (HCP) caring behaviors and sensitivity to emotional, role and practical demands of infants and families contribute to family satisfaction and improves infant health outcomes. This research examined NICU HCP's beliefs about providing family-centered care (FCC) and factors that influence decision-making to implement FCC. The sample included 263 multidisciplinary HCP working in NICUs around the world. Participants reported low/moderate levels of family caring beliefs (M = 83.81, SD = 6.49), high levels of perceived stress (M = 27.81, SD = 3.21), and moderate levels of burnout (M = 32.62, SD = 2.71). A significant negative correlation (r = −0.489, p < .001) exists between participant perceived stress and caring beliefs. A significant correlation (r = 0.473, p < .001) exists between participant perceived stress and level of burnout. Results suggest stress and burnout are critical factors foundational to HCPs' caring beliefs and FCC delivery.

Improving Family-Centered Care for Infants in Neonatal Intensive Care Units: Recommendations From Frontline Healthcare Professionals.

Family-centered care is a philosophy and healthcare delivery model adopted by many neonatal intensive care units (NICUs) worldwide, yet practice varies widely. The aim of this study was to synthesize recommendations from frontline NICU healthcare professionals regarding family-centered care. Data were obtained from the baseline phase of a multicenter quasi-experimental study comparing usual family-centered NICU care (baseline) with mobile-enhanced family integrated care (intervention). Members of the NICU clinical care team completed a family-centered care survey and provided free-text comments regarding practice of family-centered care in their NICU and recommendations for improvement. The comments were analyzed using a directed content analysis approach by a research team that included NICU nurses and parents. Of the 382 NICU healthcare providers from 6 NICUs who completed the survey, 68 (18%) provided 89 free-text comments/recommendations about family-centered care. Almost all comments were provided by nurses (91%). Six main themes were identified: language translation; communication between staff and families; staffing and workflow; team culture and leadership; education; and NICU environment. The need for greater resources for staffing, education, and environmental supports was prominent among the comments, as was team culture and staff-parent communications. The NICU healthcare professionals identified a range of issues that support or impede delivery of family-centered care and provided actionable recommendations for improvement. Future research should include economic analyses that will enable determination of the return on investment so that NICUs can better justify the human and capital resources needed to implement high-quality family-centered care.

An Approach to Family-Centered Electronic Health Records in Pediatrics.

Over the years, family-centered care in the field of pediatrics has become more prevalent and has improved the patient experience. Recent innovations within electronic health records (EHR), such as patient portals, have provided a more “patient-centered” approach by allowing patients to be interactive with the EHR and have greater agency of their own healthcare. There are also ample opportunities within an EHR to improve the patient experience with delivery of family-centered care. In this perspective, we discuss the design and use of a family-centered EHR for the purposes of optimizing the pediatric patient experience.

Timely Family Feedback to Guide Family Engagement in the Intensive Care Unit.

Organizations motivated to provide high-quality care in the intensive care unit are exploring strategies to engage families in patient care. Such initiatives are based on emerging evidence that family engagement improves quality and safety of care. To gather family feedback to guide future nurse-led quality improvement efforts to engage families in the intensive care unit setting. The Critical Care Family Satisfaction Survey, which consists of 20 items rated from 1 (very dissatisfied) to 5 (very satisfied), was paired with open-ended questions and administered to families during the intensive care unit stay from March through December 2017. Content analysis was used to identify themes regarding the family experience. Responses were collected from 178 family members. The mean (SD) score on the survey was 4.65 (0.33). Five themes emerged regarding the delivery of family care in the intensive care unit: family interactions with the interdisciplinary team, information sharing and effective communication, family navigation of the intensive care unit environment, family engagement in the intensive care unit, and quality of patient care. This quality improvement project provided foundational information to guide family engagement efforts in the intensive care unit. Real-time solicitation of feedback is essential to improving the family experience and guiding family-centered care delivery in this practice environment.

Organizational Sensegiving in Family-Centered Care: How NICU Nurses Help Families Make Sense of the NICU Experience

ABSTRACT As frontline caregivers, nurses play a central role in the coordination and delivery of family-centered care (FCC) in neonatal intensive care units (NICUs). Nurses see first-hand the fear, uncertainty, and anxiety parents experience due to unfamiliar and intimidating elements of neonatal care and the NICU environment. This study examines the sensegiving strategies nurses use to help families make sense of their NICU experience. In-depth, semi-structured interviews were conducted with 14 NICU nurses at a mid-size nonprofit hospital. Findings reveal nurses utilize four sensegiving strategies to influence parents’ understanding of, response to, and participation in neonatal care practices: educate parents, personalize information, promote open communication, and encourage meaningful involvement. Overall, nurses rely on communication to align parents’ meaning construction with FCC features and goals. Hospital administrators and nurse managers should integrate this study’s findings into nurse training and professional development opportunities to teach nurses about parental sensemaking, factors that affect nurse sensegiving efforts, how to create effective sensegiving strategies, and sensegiving challenges they may face. Healthcare leaders should also provide organizational structures, resources, and continuing education programs that help nurses cope with the emotional demands of sensegiving. Moreover, nurses should talk to colleagues or supervisors and participate in self-care activities if sensegiving starts to impact their well-being or ability to provide effective FCC.

Family-Centered Care During the COVID-19 Era

Family support is more, not less, important during crisis. However, during the COVID-19 pandemic, maintaining public safety necessitates restricting the physical presence of families for hospitalized patients. In response, health systems must rapidly adapt family-centric procedures and tools to circumvent restrictions on physical presence. Strategies for maintaining family integrity must acknowledge clinicians’ limited time and attention to devote to learning new skills. Internet-based solutions can facilitate the routine, predictable, and structured communication, which is central to family-centered care. But the reliance on technology may compromise patient privacy and exacerbate racial, socioeconomic, and geographic disparities for populations that lack access to reliable internet access, devices, or technological literacy. We provide a toolbox of strategies for supporting family-centered inpatient care during physical distancing responsive to the current clinical climate. Innovations in the implementation of family involvement during hospitalizations may lead to long-term progress in the delivery of family-centered care.

Perspectives of African-American Family Members about Kidney Failure Treatment

Understanding African-American families' experiences with treatment for kidney failure is necessary for informing the delivery of family-centered care and the design of appropriate interventions. This qualitative study explored treatment-related questions, concerns, and family impacts among African-American family members of patients with pre-kidney failure and kidney failure. Thirty-five family members participated in focus groups stratified by patients' treatment experiences (pre-kidney failure, in-center hemodialysis, peritoneal dialysis, awaiting living-donor kidney transplantation, or post-transplantation). Family members raised questions and concerns about the psychological, lifestyle, and practical aspects of treatment. Similarly, discussions about family impacts emphasized psychosocial effects, lifestyle consequences, and the provision and receipt of support. Efforts to address these questions, concerns, and perceived family impacts through additional research, early and tailored education, and supportive interventions are needed.

A narrative review of family members' experience of organ donation request after brain death in the critical care setting.

Family members of critically ill patients suffer from high levels of anxiety and depression in the ICU, and are at risk of developing post-ICU syndrome following ICU discharge. In the case of brain death, and potential organ donation, the family is at the center of the decision process: within a limited time frame, the family will be informed that the patient is brain-dead and will be approached about potential organ donation. Family experience with organ donation has been the topic of several research papers allowing one to gain knowledge about family members' experience of organ donation, emphasizing specific needs, adequate support, and pointing out gaps in current delivery of family-centered care. In this narrative review, experts, clinicians, and researchers present the various legal systems regarding family implication in organ donation decisions; describe factors that influence the decision-making process; highlight family perspectives of care and respect for potential donors in the ICU environment; describe the impact of organ donation discussions and decisions on post-ICU syndrome; and suggest communication skills and support to be developed in the future. A research agenda for the next decade is also encouraged. Overall, challenges remain and concern all persons involved in the process, ICU doctors and nurses, the organ procurement organization, family members, and, in some cases, the patients themselves. Looking at the big picture will provide opportunities for further improvements.

Parent perceptions of the impact of the Paediatric Intensive Care environment on delivery of family-centred care

ObjectivesTo examine parent perception of how the physical and cultural environment of the paediatric intensive care unit impacted the implementation of family-centred care as outlined by the Institute for Patient and Family Centered Care. Research designA qualitative descriptive design utilizing secondary analysis from a longitudinal study. Sixty-one interviews with three mothers and three fathers (31 interviews with mothers, 30 interviews with fathers) of infants with complex congenital heart defects treated in a paediatric intensive care unit were subjected to secondary analysis via content analysis. The previously completed individual interviews with parents took place at least monthly ranging from soon after birth of their infant to one year of age or infant death, whichever occurred first. FindingsThe family-centred care core concepts of information sharing, participation, respect and dignity were present in parent interviews. Parents indicated that the physical and cultural environment of the pediatric intensive care unit impacted their perceptions of how each of the core concepts was implemented by clinicians. The unit environment both positively and negatively impacted how parents experienced their infant’s hospitalisation. ConclusionIn the paediatric intensive care unit, family centred care operationalised as policy differed from actual parent experiences. The impact of the physical and cultural environment should be considered in the delivery of critical care, as the environment was shown to impact implementation of each of the core concepts.

Paradigm shifts in inpatient psychiatric care of children: Approaching child- and family-centered care.

This article describes the components of child- and family-centered care, including a review of the literature about the delivery of family-centered care and the barriers that often prevent the provision of such care. The article describes an inpatient child psychiatric unit that has implemented an approach to care that embraces these principles. The changes in structures and policies that the unit adopted are described, with specific examples cited as illustrations of the components of this care. To describe the elements of child- and familycentered care and the ways in which this model of care may be implemented on inpatient child psychiatric units. Literature review including journal reports and articles and books. Preliminary outcomes are encouraging in the decrease in use of practices such as restraint and seclusion, and physical holds. Further research examining parents' satisfaction is warranted in determining the success of such endeavors.

Health-Related Quality of Life after Pediatric Liver Transplantation: A Qualitative Analysis of the Perspectives of Health Care Providers.

With improved survival outcomes after pediatric liver transplantation (LT), health-related quality of life (HRQoL) is an important outcome metric. Understanding the elements contributing to HRQoL after LT in children would enable more targeted strategies towards optimizing best outcomes. This qualitative study aimed to explore health care providers (HCP) perceptions about HRQoL after pediatric LT. Thirteen experienced HCP participated in two focus group discussions. Data analysis via a thematic analysis approach revealed 4 major themes: “LT as a facilitator of better HRQoL,” “coping and adapting to LT,” “living with a transplanted liver,” and “the family context.” HCP identified elements that both enhance (improved physical health, peer relationship, and activities of daily living) and challenge (need for immunosuppression, transplant follow-up, and restrictions) the multidimensional domains of HRQoL. HCP perceived LT to be a stressful life-changing event for children and their families. Patients and their parents' ability to cope and adjust positively to LT was perceived as a key contributor to better HRQoL. HCP perspective highlights the importance of promoting psychosocial support and a family-centered care delivery model towards the overarching goal of optimizing durable outcomes.

The challenge of family-centered care in palliative medicine.

Palliative care has long aspired to the competent delivery of family-centered care alongside outstanding person-centered care.

Teaching About Better Family-Clinician Partnerships in High-Risk Pediatric Asthma Care.

Family–clinician partnership including communication, trust, respect, and power leveling is essential in pediatrics. Our case study illustrates elements supporting/hindering partnership in a high-risk urban pediatric asthma clinic. Data from observation of a 100-minute visit were qualitatively analyzed by applying codes to themes, using family-centered principles. Three key categories emerged from examining interactions and their sequencing: (1) partnership supported, (2) partnership missed, and (3) partnership hindered. Practitioners must become more sensitive to families’ lives and skilled in family-centered care delivery. Clinician education about partnership can help with negotiating workable treatment strategies for complex conditions such as asthma and reduce health disparities.