Paediatric Patient and Family-Centred Care: Ethical and Legal Issues

The Thunder Bay Regional Health Sciences Centre (TBRHSC) in Thunder Bay, Ontario, has adapted a model of Patient and Family-Centre Care (PFCC) that has profoundly changed the way the organization makes all important clinical and non-clinical policy decisions. Central to the PFCC model of care are the Patient and Family Advisors (PFAs) who sit on every decision-making committee, providing invaluable insights into how efficiently the academic health sciences centre operates today and how to make improvements for tomorrow. The TBRHSC was recognized in 2011 by Accreditation Canada, which named two of its PFCC-related initiatives as Leading Practices. The TBRHSC has been identified internationally as a leader in the PFCC model of care. This chapter looks at the TBRHSC’s PFCC model, using paediatrics to illustrate how PFCC and PFAs in particular have improved patient and family care.

Aim: To evaluate the application of the principles of Patient and Family-centered Care Methodology: A cross-sectional study was conducted in the Pediatric and Neonatal Intensive care unit of a tertiary care hospital in Punjab, Pakistan. IRB approval was granted, and the study spanned a period from January 2019 to June 2019. A questionnaire was created to survey the pediatric patient's parents. Data analysis was done using SPSS 25. Results: A total of 158 responses were recorded. The majority of the parents felt that patient and family-centered care was not being applied to the admitted patients' management plans in the pediatric and neonatal ICUs. Conclusion: The treatment of patients in the pediatric and neonatal ICUs was not following the principles of patient and family-centered care. Therefore, further studies are required to improve the ease of access, alongside limiting the barriers to the patient and family-centered care in Pakistan. This way, patients can benefit from improved outcomes associated with PFCC. Keywords: Neonatal intensive care unit (NICU), intensive care unit (ICU), pediatric intensive care unit (PICU), patient and family-centered care (PFCC).

The relationship between the paediatrician, the child and his family is often “paternalistic”: “I'm the physician in charge, it's just me that knows what's the best for the child's health and I take decisions for the child and his family”. This approach doesn't consider the autonomy of the patient and his right to have an active role in the decision making process about himself and his health. Almost every Clinical Guideline recommends to actively involve the patient in the diagnostic-therapeutic work-up but seldom they suggest how to. The Patient and Family Centered Care (PFCC) points out priorities, aims, methods to carry out a clinical approach really focused on the patient and his family and not just on his disease [1]. The PFCC highlights the importance of the patient's experience, which will be better if physicians integrate the disease management procedures with standardized “relational procedures” [2], focused on the patient and his family. According to PFCC the Paediatrician is not interested into taking decisions for the patient (paternalistic approach) but he wants to involve him and the family in every step of the diagnostic/therapeutic pathway, turning the relationship into a partnership. The paediatrician should not just treat the disease but also care for the patient and his families, working hard to understand their real needs, wishes and fears, building an empathic relationship in order to make the child and his parents feel accepted, understood and supported. An increasing number of Scientific Societies recognise the PFCC as an essential element of quality health care [3]. Clinical studies show that the PFCC improves clinical outcomes, entails better compliance to therapies, more satisfaction for health care workers and patients, as well as reduction of costs and legal issues [4]. According to PFCC the health workers have to learn the communication and empathy abilities needed to recognize feelings and wishes of the patients in order to give them answers [5]. Communication is a technical skill, which can be improved through experience and a specific training that should start since the beginning of medical school [6]. In summary the PFCC focuses on the patient, as a person, at 360°, through strategies that are feasible, repeatable, verifiable and continuously evolving, according to evidence.

111 Background: Patient and family-centered care (PFCC) represents an evolution from traditional models of provider-focused and patient-focused care that places a strong emphasis on optimal patient communication, patient autonomy, and shared decision-making within care teams. A shift towards PFCC requires participation across all provider groups. Despite the importance of physician buy-in, research examining physicians’ perspectives on PFCC is lacking. We sought to explore oncologists’ familiarity with the principles of PFCC and perceived barriers to implementing principles of PFCC. Methods: In this qualitative exploratory study, we conducted semi-structured interviews with 18 oncologists (8 radiation, 4 medical, 4 surgical, 2 hematologist-oncologists) at a single Canadian academic cancer institution. Interview data were analyzed using coding principles drawn from grounded theory. Constant comparisons were used to identify recurring themes. Results: We identified 3 dominant themes related to physicians’ interpretations of PFCC: 1) Physicians expressed a limited understanding of the formal principles of PFCC, 2) Physicians identified patient autonomy as essential to PFCC and 3) Disparities between patient and physician objectives exist and result in compromises that may affect the quality of PFCC delivered. Oncologists perceived that spending more time with patients improved PFCC, but also recognized that it would leave less time for other necessary activities. Participants also identified a number of ‘system’ barriers to PFCC, including limited staff and clinical space, excessive case load, a lack of physician support and input into operational decisions, and funding constraints. Many felt that PFCC was challenged by inefficiencies in the system of care delivery, and that progress might lie in reorganization to more clearly match health care staff’s roles and responsibilities to their credentials and skills. Conclusions: Advancing PFCC in our institution will require continued education of physicians regarding the principles of PFCC, acknowledgement and preservation of the PFCC behaviors already in practice and creative solutions to address the system issues that may hamper their abilities to enact PFCC.

Background: Patient and Family Centred Care (PFCC) is one of the fundamentals in paediatrics nursing which is struggling to gain recognition in nursing practice worldwide due to inadequate exploratory studies in the area. Others also call PFCC in paediatric world as Child and Family Centred Care (CFCC). Admittedly, its benefits to paediatric health care delivery cannot be measured but practicing is problematic. Nurses, policy makers and nursing research are yet to give the necessary attention PFCC deserves.
 Purpose: The purpose of this study was therefore to explore the practice of PFCC in the Paediatric Ward of Tamale Teaching Hospital.
 Methodology: This study made use of a purposive convenient design. Qualitative data was collected using validated interview guide which were administered to ten participants in the Paediatric Ward of Tamale Teaching Hospital in the Tamale Metropolis.
 Key Findings: The results showed majority of the participants do not have enough knowledge on PFCC, PFCC is partially being practiced and inadequate infrastructural in the ward.
 Recommendations: Policy on PFCC should be established by the government, models of Patient and Family Centred Care should be developed, refresher courses on PFCC should be given to nurses, the general public should be sensitized on PFCC and more nursing research should be carried on it.

Increasingly, patient- and family-centered care (PFCC) is recognized as a valuable component of healthcare reform with rich opportunities for improvement within oncology. Shifting toward PFCC requires physician buy-in; however, research examining their perspectives on PFCC is lacking. We sought to explore oncologists' perspectives on PFCC to identify factors that influence their ability to practice PFCC. We conducted semi-structured interviews with 18 oncologists (8 radiation, 4 medical, 4 surgical, 2 hematologist-oncologists) at a single Canadian academic cancer institution. Interview data were analyzed using thematic analysis and principles drawn from grounded theory. Subsequently, focus groups consisting of the interviewed participants were facilitated to confirm and elaborate on our findings. Constant comparisons were used to identify recurring themes. Three dominant themes emerged. First, physicians displayed cautious engagement in their approach to PFCC. Collectively, participants understood the general principles of PFCC. However, there was a limited understanding of the value, implications, and motivation for improving PFCC which may create reluctance with physician buy-in. Second, both individual and system barriers to practicing PFCC were identified. A lack of physician acknowledgement and engagement and competing responsibilities emerged as provider-level challenges. System barriers included impaired clinic workflow, physical infrastructure constraints, and delays in access to care. Third, physicians were able to identify existing and potential PFCC behaviors that were feasible within existing system constraints. Advancing PFCC will require continued physician education regarding the value of PFCC, acknowledgement and preservation of effective patient- and family-centered strategies, and creative solutions to address the system constraints to delivering PFCC.

ObjectiveThe goal of this scoping review was to collect data on patient- and family-centered care (PFCC) programs and initiatives that have included the direct involvement of librarians and information professionals to determine how librarians are involved in PFCC and highlight opportunities for librarians to support PFCC programs.MethodsSystematic literature searches were conducted in seven scholarly databases in the information, medical, and social sciences. Studies were included if they (1) described initiatives presented explicitly as PFCC programs and (2) involved an information professional or librarian in the PFCC initiative or program. Based on the definition of PFCC provided by the Institute for Patient- and Family-Centered Care, the authors developed a custom code sheet to organize data elements into PFCC categories or initiatives and outcomes. Other extracted data elements included how the information professional became involved in the program and a narrative description of the initiatives or programs.ResultsAll included studies (n=12) identified patient education or information-sharing as an integral component of their PFCC initiatives. Librarians were noted to contribute to shared decision-making through direct patient consultation, provision of health literacy education, and information delivery to both provider and patient with the goal of fostering collaborative communication.ConclusionsThe synthesis of available evidence to date suggests that librarians and information professionals should focus on patient education and information-sharing to support both patients or caregivers and clinical staff. The burgeoning efforts in participatory care and inclusion of patients in the decision-making process pose a unique opportunity for librarians and information professionals to offer more personalized information services.

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Historically, guidelines and protocols for involving families in the care of hospitalised loved ones have shifted over the years [1] from when family and friends were considered as ‘visitors’ [2]. In the early nineteenth century, children's parents' hospital visits were limited to just a few per week [3]. Concerns over safety and infection control prompted clinicians to enforce strict visiting restrictions, significantly limiting family engagement in patient care, including participation in decision-making, especially in the critical care settings [4]. In recent decades, the role of families in the ICU has expanded beyond simply visiting patients [5]. At the beginning of the 20th century, articles began to address the needs of patients and their families in the critical care settings, and nurses recognised the value of family involvement in patient care [6]. In 2004–2005, the American College of Critical Care Medicine published clinical guidelines for supporting patient and family-centred care (PFCC) in the intensive care. The guidelines included 43 recommendations, emphasising areas, such as shared decision-making, open visitation policies, spiritual, religious and cultural support for families, addressing staff stress related to family interactions and participation in rounds and resuscitation efforts [7]. Later, in 2012, Morandi et al. presented the acronym of the multicomponent approach for improving quality of care with ICU patients, the ‘ABCDE’ bundle [8], and introduced the ‘F’ component in 2017 [9] for family engagement and empowerment. The addition highlighted the importance of partnering with family in decision-making and treatment planning. More recently, the Society of Critical Care Medicine published the updated guidelines on family-centred care for adult ICUs, reinforcing the importance of families in the care process [10]. Notably, recommendations to liberalise ICU visitation policies were reaffirmed almost two decades after the initial guidelines, emphasising the continued evolution of family-centred policies in the ICU. PSCC is defined as an approach to health care that is respectful of and responsive to individuals and their families' needs and values [11]. The approach emphasises collaboration, delivery and planning relationships to optimal quality of care and minimises Post-Intensive Care Syndrome—Family (PICS-F) [12]. This approach tends to improve outcomes, satisfaction for patients, families and healthcare providers [11]. However, the challenges of implementing this approach remain. PFCC requires clinicians to centre the families in the care of the patients, collaborating with them while ensuring safe care in an equitable care environment. An additional challenge is identifying if the patient desires and consents to visitors. The complexity of shifting from protocols and guidelines to PFCC in the ICUs can be categorised into ICU clinicians' barriers, family-related barriers and organisational barriers. Language barriers, discomfort with family presence, both families' and clinicians' personalities, and prior negative experience are all part of communication challenges encountered by ICU clinicians [13-15]. Kiwanuka et al. [14] identified communication barriers within ICU teams, including conflicts among clinicians, between doctors and between experienced doctors and nurses. Families may feel psychological distress; cognitive overload of information and diversity of cultural beliefs can lead to disagreement with the plan of care [13]. Moreover, the ICU environment is unpredictable, acute and dynamic, which causes an emotional and physical burden not only for ICU clinicians but certainly for families. Therefore, the engagement of the family in patient care is a challenge. The lack of clear organisational policies or inconsistency in their application presents challenges for both ICU clinicians and families. Environmental conditions within the ICU also impact family engagement, including limited privacy, excessive noise [14], a comfortable waiting room and the absence of a designated area for private discussion. These factors are essential for creating a supportive environment for the families. The added complexities of shifting from policies and guidelines that rely on evidence-based studies to bedside practice involve barriers and challenges to ICU clinicians and families. These barriers can be found globally [15]. The successful implementation of global guidelines into everyday practice is a demanding process. Bridging the gap between guidelines and clinical practice requires organisational culture shifts, strong ICU leadership and effective communication skills among clinicians [15]. The challenge moving forward is to balance between ensuring safety, preventing clinicians' burnout and fostering meaningful family involvement in ICU care. For achieving the optimal balance, a practical recommendation can be adopted. Figure 1 presents a sequential set of recommendations to support effective implementations of the PFCC approach. Encouraging a supportive environment where clinicians feel comfortable raising concerns, prioritising clinicians' well-being by supportive leadership, addressing burnout and moral distress [13]. Adjusting cultural communication and maintaining flexibility as needed to ensure care is humanised and centred for the patients and their families. The authors declare no conflicts of interest. Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.

Purpose : Life-threatening illnesses represent a crisis for individual patients and their families. Little has been made to understand the priorities or perspectives in developing a care plan. This results in poor outcomes, and patients and families return home without being satisfied with the care provided. This study aimed to address nurses’ and families’ care priorities on patient and family-centered care principles and compare those priorities.Methods : A quantitative comparative descriptive research was conducted. The data were part of a study that was carried out to elicit and compare nurses’ and families’ perceptions of complying with patient and family-centered care (PFCC) principles in intensive care units (ICU) in Ghana. The respondents were ICU nurses (n=123) and family members of hospitalized patients in the ICU (n=111). The tool for the study was a “modernized version of a hospital self-assessment inventory on PFCC,” and data analyses were performed using SPSS version 20.0.Results : Nurses and families differed significantly in their priorities of care based on the principles of PFCC. The means and <i>p</i>-values were significantly different for the definition, pattern of care and access to information/education, and the overall total scores of the patient and family-centered care principles (PFCCP)Conclusion : To render care that aligns with the care priority of families and patients in the ICU, nurses must plan care in consultation with their families.

Patient- and family-centered care (PFCC) literature is growing, but few reports present patient, caregiver, and practitioner perspectives about care coordination in a team-based model. To understand the patient's, caregiver's, and physician's ideal forms of PFCC, we investigated the function of the medical team quarterback, who coordinates and advocates for appropriate care, and probed to understand how the quarterback works with a team to contribute to ideal PFCC. Nine focus groups with 92 participants were held in 3 major cities. Patients (n = 35) and family members (n = 36) were recruited through market research groups. Physicians (n = 21) were recruited by the American College of Physicians. Focus group transcripts were analyzed and coded using inductive analysis. The quarterback emerged as an important function for addressing care gaps and improving the care experience. We identified 6 themes articulated by participants that defined the role of a medical team quarterback: Overseeing care; coordinating diagnoses, tests, and treatments; advocating for patients; identifying and respecting patient values; proactively communicating; and solving problems. Patients and family members in our sample were open to different members of the care team acting as quarterback in coordination with the physician. Medical team quarterbacks were perceived as enhancing team-based care by facilitating the coordination/communication that is critical to PFCC. Patients and family members acknowledged that PFCC can be delivered by different members of the medical team if the care felt organized and coordinated with the primary care physician.

Nursing execs key to PFCC I'm writing in regards to the April article “Working Together to Improve the Patient Experience” by Richard Billingsley, MHA, MSN, RN. As a quality nurse with more than 8 years bedside experience, forming partnerships with patients and families is an essential component of providing high-quality patient- and family-centered care (PFCC). Billingsley identifies 10 steps that healthcare organizations can take to enhance the patient experience and provide a supportive structure for PFCC. Achieving PFCC is a daunting task for many healthcare organizations and systems, which have the interworking relationships of physicians, nurses, and families—all seeking to provide high-quality patient care. With each discipline comes various concerns and barriers. Establishing core concepts, such as dignity, respect, information sharing, participation, and collaboration, can benefit healthcare organizations that are attempting to implement PFCC models. It has been acknowledged that many hospitals and providers have difficulty empowering patients and entering into a mutual partnership to enhance the patient experience. Billingsley advocates for the adoption of strong executive leadership, either in the form of the CEO or CNO. I believe executive nursing leaders are influential in enhancing PFCC and improving the overall patient experience. Without a strong nurse executive who has an understanding of holistic healing, family-centered care is rarely achieved within organizations. Who better than a nurse to understand the importance of providing PFCC? As nurses, it's at the core of our values to advocate for our patients and families, and ensure collaborative care from all disciplines. Discharge planning at the bedside In response to the May article “Reinforcing Discharge Education and Planning,” by Bobbie Reddick, EdD, MPH, RN, and Cecil Holland, EdD, PhD, RN, I wish to elaborate more on this topic and take the discharge planning rounds to the patient's bedside. I've been a charge nurse now for around 3 years and we conduct Care Coordination Rounds every day to help with our discharge planning, but we don't include the patient. The case manager or social worker talks with the patient afterward to give him or her choices but I think that if we just included the patient from the beginning, it would be better. Although we all know that it's preferred for patients to get out of the hospital quicker, we have to keep the patient in mind when we're discussing discharge planning. Not only can you improve your patient education, but you can also significantly decrease your length of stay. Because we're talking about discharging the patient, we should include the patient in our discharging planning. The discharge planning process starts upon admission to the hospital and includes a multidisciplinary team consisting of the bedside nurse, charge nurse, case manager, physician, and the patient/family members. When you get engaged with the family and patient, they're going to be more likely to get involved. It's easy for us as healthcare workers to sit back and dictate what the patient should do, but many times we forget that the patient may not want to do what we think is best. Discharge planning rounds at the bedside can improve patient satisfaction scores and the nurses' efficiency. Whenever you don't include the patient in discharge planning, then the case manager has to go into the room and talk with the patient. When the patient has questions, the case manager asks the nurse a multitude of questions, and then we have to page the physician to ask him questions. I propose that discharge planning rounds should be performed inside the patient's room with the primary nurse, charge nurse, case manager, social worker, and PT/OT representative. When discharge planning rounds are performed in the room with the patient, you're able to hear the patient's concerns. By including the patient, you can explain when you anticipate the date of discharge is going to be and plan with the patient any needs he or she may have at home. As healthcare professionals, we need to make sure that we put the patient first and that starts with including patients in their care plan and discharge planning. Jennifer Jones, RN-BSN Stephen Davis, BSN, RN

Our study aimed to estimate how a pediatric patient’s health condition status influences parents’ perceptions of patient- and family-centered care (PFCC). We analyzed five years (2013–2017) of Medical Expenditure Panel Survey data in efforts to expand understanding of the family influence in pediatric health encounters, using family systems theory as our theoretical lens. The sample included 36,675 parents of children with developmental or chronic health conditions who reported visiting a health-care provider within the past 12 months. The independent variable was a combined measure of any developmental or chronic health conditions previously diagnosed in the child being assessed. Dependent variables included parent reports of communication variables related to how often providers: listened; showed respect; spent enough time; and explained things well. Multivariable logistic regression was used to evaluate the odds of receiving PFCC using a dichotomous measure of PFCC quality and separate domains. Results found that 1) the dichotomous variable of PFCC showed that parents of children with health conditions were less likely to report their provider always performed all elements of PFCC compared to parents whose children did not have any health conditions; 2) parents of children with developmental or chronic health conditions were less likely to report their provider always explained things well compared to parents whose children did not have any health conditions. Efforts to improve PFCC should focus on training providers to demonstrate high-quality practices to improve health outcomes for pediatric patients with developmental or chronic conditions.