Patient- And Family-centered Care Research Articles

Shadowing: a central component of patient and family-centred care.

Patient and family-centred care (PFCC), as distinct from patient-centred, or patient-focused, care, enables healthcare organisations to work collaboratively with patients and their families to enhance and improve their care experiences. Liverpool Heart and Chest Hospital NHS Foundation Trust has implemented a PFCC model that is supported by a number of strategies including 'shadowing', which involves closely following patients and their families throughout their care experiences. This article briefly describes PFCC and discusses how shadowing works and the benefits of the process.

A New Era for LGBT Health.

This is a historical moment for launching a journal devoted to LGBT health, and it is with great enthusiasm that we do so. Recent progressive developments have created an extraordinary window of opportunity to profoundly lower the barriers to healthcare for LGBT-identified persons, to research the most important health concerns and needs of specific LGBT populations, and to train clinicians in the best practices to meet those needs. By providing a much-needed authoritative source and multidisciplinary international forum in LGBT healthcare services, education, and policy, LGBT Health aims to ensure that the current window of opportunity does not close but opens into a new era for sexual and gender minority health around the globe. LGBT Health employs the LGBT acronym as an umbrella term that is much more inclusive than apparent in its component letters. We use it to include not only lesbians, gay men, bisexual, and transgender individuals, but all of those who have experienced, or who are at risk of experiencing, discrimination and stigmatization on the basis of variation in sexual orientation, sexual identity, or gender identity. This includes, but is not limited to, those who are questioning their sexual orientation or gender identity, as well as those who identify as gender queer, asexual, or intersex. While the struggle for LGBT health equality is far from new, developments during the last 3 years, including the recent end of the Defense of Marriage Act, have laid a particularly promising foundation to support substantive and enduring change. In addition to mandating humane nondiscriminatory hospital visitation policies, the Presidential Memorandum on Hospital Visitation signed by President Obama in 2010 solicited recommendations as to how the Department of Health and Human Services (HHS) could better address the needs of the LGBT community. Shortly thereafter, HHS established an Internal LGBT Coordinating Committee to ensure that the concerns of sexual and gender minority persons would be considered throughout its activities. The LGBT health initiatives begun over the last three years by HHS are described on their website (www.hhs.gov/ secretary/about/lgbthealth_objectives_2012.html). They range from measures to address anti-LGBT discrimination, violence, and bullying, to the concerns of sexual and gender minority persons across the lifespan, including LGBT youth, who may be at risk for homelessness or suicide, and LGBT older adults, who too often bear the consequences of a lifetime of discrimination and mistreatment. They also address the current need for training the health workforce in culturally competent, patient-centered health care for sexual and gender minority persons, including funding of the National LGBT Health Education Center at Fenway by the National Institutes of Health (NIH), an agency of HHS. Every 10 years, HHS sets a health agenda for the next decade. The agenda promulgated in 2010, Healthy People 2020, is a landmark in being the first of these decade-long plans to address LGBT health concerns. The 2011 Institute of Medicine’s (IOM) Report, The Health of Lesbian, Gay, Bisexual, and Transgender People, solicited by the NIH, confirmed many of the health disparities and barriers to care long known by the LGBT health community. It also identified specific gaps in our knowledge of LGBT health, established priorities for LGBT health research, and outlined a specific agenda to advance the health of sexual and gender minority individuals and populations. On June 27, 2013, the NIH held its first ever ‘‘Listening Session,’’ seeking LGBT community input to determine the highest priorities within LGBT health research. In the same year the IOM published its report, The Joint Commission (TJC) published Advancing Effective Communication, Cultural Competence, and Patientand Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: A Field Guide. This guide urges hospitals to create a welcoming and safe LGBT-inclusive environment and makes recommendations for doing so. These recommendations carry considerable weight since TJC certifies healthcare organizations for Medicare reimbursement, and most states also consider TJC accreditation as a condition for Medicaid reimbursement. Since 2011, TJC requires an LGBT nondiscrimination statement for accreditation, and it is currently fieldtesting additional measures of LGBT cultural competence that may factor into accreditation decisions in the future. There are also positive developments for LGBT health within the U.S. Department of Defense (DoD) and Veterans Health Administration (VHA). In the wake of the repeal of ‘‘Don’t Ask, Don’t Tell,’’ the DoD recognizes the need to research the health services needs of LGB veterans (the repeal does not benefit transgender veterans), who, though always present, had previously served invisibly, making their needs impossible to assess. The VHA has also taken amazing strides toward LGBT inclusiveness. Nearly 80% of its hospitals participated in the 2013 Healthcare Equality Index (HEI), a Human Rights Campaign–administered survey that evaluates LGBT inclusiveness. In 2013, HRC evaluated 718 healthcare facilities in all 50 states and trained over 4,000 healthcare administrators nationwide in LGBT patient-centered care. HEI respondents who meet four key

EP-1882: From the bunkers up: Engaging RTTs in the journey to Patient and Family Centered Care (PFCC)

EP-1882: From the bunkers up: Engaging RTTs in the journey to Patient and Family Centered Care (PFCC)

Benefits of a Co-design Model in Healthcare Donʼt End with the New Building

Thankfully, the old, paternalistic model of healthcare design and construction has been turned on its head. Gone are the days when a handful of hospital administrators made decisions in a vacuum. As Michael H. Covert illustrates in his article, the new design model, known as co-design or participatory design, is an iterative, interactive, and inclusive process. It harnesses creativity and sparks new solutions by engaging all stakeholders-patients and families, providers and staff, and the community.Co-design is best started well before the actual design process begins, and it should not end when the ribbon is cut on a shiny new building. Done well, it can support the delivery of exceptional patientand family-centered care for many years to come by breaking down barriers, embedding process improvement practices, encouraging engagement, and fostering a culture of excellence.The manifold complexities of planning, designing, building, and funding a new healthcare facility in today's environment are well articulated in both feature articles. In this commentary, we highlight some of the priorities and practices our organization found to be most useful in constructing our awardwinning children's hospital.To Build or Not to Build?In 2008, Fairview Health Services broke ground for University of Minnesota Children's Hospital (formerly University of Minnesota Amplatz Children's Hospital), which opened in 2011. Our children's hospital is part of University of Minnesota Medical Center, which Fairview operates in collaboration with University of Minnesota Physicians. As an academic medical center, we serve a large population of acute patients-many of whom have hospital stays that last weeks or months. The decision to build a new facility was driven by the fact that our pediatric units and programs were scattered among various buildings on the medical center's two campuses, located across from each other on the banks of the Mississippi River in Minneapolis.Several staff members who worked closely on this project described it as blessed-everything came together, and it was completed on time and slightly under budget. The credit rests squarely with the steering committee; the executive project manager; the clinical and operational planning leads; and the hundreds of stakeholders, including patients and families, who devoted themselves to achieving our overarching principle: Create the best environment to receive and provide children's healthcare.How We Did It Develop Guiding PrinciplesAn essential first step was to develop guiding principles that would set the direction and framework for the planning, design, and construction of our children's hospital. The four-page document that was produced details specific guidelines related to care, research and education, building design, image, community involvement, and capital stewardship. Far from being some pro forma document that sa\t in a file cabinet, it helped shape decisions, large and small, throughout the process.Some of these guiding principles mirror the design principles applied by Palomar Health, as outlined by Covert. Whereas Palomar Health's focus seems to have been divided among a number of considerations, such as maintaining expandability and flexibility and managing costs in addition to creating a more patient-centric culture, our focus was trained squarely on the patient and family experience. It was our first guiding principle-Optimize the patient and family experience through a plan and design that fosters patientand family-centered care-and served as a touchstone in countless decisions throughout the hospital, not just in patient rooms. (See more details in the Focus on Patients and Families subsection.)Another guiding principle was the safety and security of patients, families, staff, and physicians. We brought in a national expert in safe-room design to advise us. Like Palomar Health, we also chose to install same-handed rooms, rather than mirror-image rooms. …

Patient- and family-centered care in Qatar: A primary care perspective

Healthcare policies in Qatar place a high value on the concept of patient and family-centered care (PFCC) in primary care. The Institute of Medicine raised the concern of patient care in 2001 and Davis et al. advocates of PFCC, promoted the concept. The Primary Health Care Corporation (PHCC) and Hamad Medical Corporation (HMC) in Qatar provide all the government health services of the country at this time. They have sought to integrate PFCC into its systems, while preserving the traditional Qatari way of life. Families in times past were excluded from healthcare involvement as medical specialization progressed, but the undervalued importance of families contributing to healthcare was later realized. Twenty-one established health centers in 2013, are to be augmented by thirty more within five years. By 2011, all Qatar's major hospitals and its Ambulance Service had achieved JCI accreditation. Entitlement to government healthcare is free for Qatari nationals, or at a small charge for expatriates who maintain a valid health card. Patients have access to a physician at health centers, but have to be referred for hospital consultant appointments. A range of services is available, including a pharmacy, at every health center. A Charter of Patient, Family, and Children's Rights is in place for HMC supporting family participation in care. The Center for Health Care Improvement (CHCI) was launched in 2008 and focuses on PFCC. Eight core objectives of the CHCI are outlined. Effective patient education with the adoption of sound healthcare policies and fiscal responsibility should help Qatar attain the goals it requires.

Influence of Religion in Promoting Familial Caregiving in Nigerian Hospital Wards

Objective- The need for patients and family centered care as promoted by patient and family centered care (PFCC) model suggests the active involvement of patients' families and friends in caring for their hospitalized patients by use of collaboration, demonstration of dignity and respect, sharing information, and encouraging participation. Even though there are literatures that investigated the nature and typologies of family care actions that revealed the reasons for family participation, little is known of the influence of religion/spiritualism on this informal caregiving. This qualitative study was set out to explore religious role in promoting family participation in caring for their hospitalised relations. Methodology/Technique Non-participant observation was employed to study the typology of family care actions in male and female surgical wards of a tertiary institution in Nigeria. Findings Findings from the study reveals the significant influence of religion in identifying what constitute family care actions in Nigerian hospitals. Novelty - The benefits of family participation in care were seen to be influenced by the psychological and emotional support a patient requires, however this study reveals the significant religious influence. Type of Paper: Review Keywords: , Patient,Family, Religion, Caregiving

Transforming Medical Practices: A Significant Opportunity for Group Psychotherapists

Group therapists are in a unique position to be effective as change consultants to medical practices and hospital departments that wish to transition to patientcentered care (PCC) and patient- and family-centered care (PFCC). Medical groups are under increasing pressure to adopt PCC because it has been shown to be an important component of substantial improvements in health care delivery, including cost containment. The establishment of patient-centered care requires sensitive, repeated group-based interventions to be successful; group therapists have a deep understanding of such interventions. The paper outlines the literature on PCC and PFCC, considers the group processes underlying successful implementation, and then turns to various phases of the consulting process itself, including system-diagnostic interviewing, group meetings, resources, and tracking the consequences of the consultation.

Clinician Perceptions of a Changing Hospital Environment

The purposes of this study were to describe how a move into a new hospital influenced the work environment, how long it takes clinicians to adjust to such a significant change, and how much a new hospital work environment helps the practice shift toward patient- and family-centered care (PFCC). Creating a healthy work environment to keep patients safe and staff engaged in the mission of the organization is perhaps one of the most important roles of hospital administrators and nursing leaders. A descriptive and comparative design was used to investigate how clinicians perceive, evaluate, and adjust to a new hospital environment, and how much a healthy work environment helps the practice shift toward patient- and family-centered care. Perceived stress was significantly higher than baseline 15 months after the move into the new hospital (p < 0.0000), and employees with 3 or more years of service had significantly higher stress than others (p < 0.000). Nurses had the second lowest mean stress score (x = 12.5). The PFCC score increased significantly (p < 0.007). The single-patient room model increased the workload of many clinicians, and their stress increased after 15 months. There were additional burdens not measured that also may have added to the stress of the participants. The new hospital enabled a significant practice shift toward PFCC. Healing environments, organizational transformation, patient-centered care, pediatric, satisfaction.

The Care of the Head and Neck Cancer Patient Is a Team Sport

T he theme for my presidential year has been to highlight the value and importance of the multidisciplinary team in providing compassionate, quality, and patientand familycentered care for the head and neck cancer patient. The head and neck cancer surgeon, along with colleagues in medical and radiation oncology, are what we typically and historically have considered the primary members of the team. Upon further reflection, however, we must all recognize and acknowledge the value and efforts afforded our patients by a diverse cadre of health care professionals, without whom we could not possibly provide the care we collectively aspire to deliver. These team members include nurses, physician assistants, speech pathologists, dentists, maxillofacial prosthodontists, social workers, radiologists, anesthesiologists, nutritionists, medical assistants, and administrative assistants. Discovery of the novel treatment paradigms that offer improvement in tumor control and patient outcome requires the efforts of scientists and clinical trialists. Results of experiments and clinical trials require the expertise of biostatisticians. The new age of genomics, proteomics, and next-generation sequencing has created a new discipline, that of the bioinformatician. Thus, there are many critically important members of the multidisciplinary team that provide care for the head and neck cancer patient and define the future of this care.

The effect of a patient- and family-centered care curriculum on pediatrics residents' patient-centeredness.

Patient- and family-centered care (PFCC) approaches to care are important in enhancing the patient-centeredness of the health care experience, yet little is known about the effectiveness of formal approaches for teaching patient-centeredness in residency. We developed and implemented a PFCC curriculum and assessed its impact on residents' self-perceptions of patient-centered behavior and practices. We used a quasi-experimental, nonrandomized approach with a pretest-posttest design. An experimental group of 24 interns filled out the Patient Practitioner Orientation Scale (PPOS) before residency, and a control group of 18 graduating residents who had not been exposed to a PFCC curriculum also completed the PPOS. After 2years of residency and exposure to a PFCC curriculum, interns in the experimental group repeated the PPOS. We compared mean total and subscale PPOS scores. There was no difference in baseline total or subscale PPOS scores between the experimental and control group. The mean total PPOS score for the experimental group after exposure to the curriculum was 4.55 (P = .45), reflecting no change in patient-centeredness. The 17 female interns in the intervention group were more patient centered (4.8 ± 0.36) than the 6 male interns (4.2 ± 0.38) (P = .005), scoring significantly higher (4.6 ± 0.39 versus 4.0 ± 0.38) in the sharing domain (P = .001). Interns' exposure to a PFCC curriculum did not result in a change in their perceived patient-centeredness. Most pediatrics residents at our children's hospital perceive themselves as patient and family centered at the start of residency and remain so throughout.

Factors Associated With In-Hospital Death Among ICU Patients Receiving Palliative Care Consultation (S738)

Background. The 2010 Institute of Medicine report on the future of nursing recommends nurses practice to the fullest possible extent, which includes participating in important healthcare conversations. However, many nurses feel ill-prepared to participate in end of life (EOL) conversations due to inadequate training or experience. Research Objectives. To address this problem, project Objectives included: empowering nurse participation in EOL education, building confidence in ability to participate in EOL conversations, and exploring moral distress related to EOL transition. Method. To achieve these Objectives, an interdisciplinary educational forum was piloted using case analysis and panel discussion to engage the audience. Panelists included a physician from palliative care services, an oncology nurse-educator, and a nurse-educator with a specialty in medical ethics. Pre-event survey instruments to measure nurse confidence and frequency of participation in EOL discussions were distributed and collected 1 month preceding the forum. Post-event surveys were distributed and collected 1 month later. Permission was granted to publically share comments. Result. Sixty healthcare professionals attended the educational forum; 24 were nurses from inpatient and outpatient settings at one institution. Eighteen nurses submitted both preand postevent surveys; a 75% response rate. Paired comparisons of preand post-event surveys indicate a modest increase in nurse participation in interdisciplinary family meetings by self-report (pre-post difference, p < 0.05) and a positive trend indicating improved nurse confidence in ability to continue these conversations. Comments indicate a desire and need for similar team-focused discussions to encourage candid dialogue among all interdisciplinary healthcare providers involved in the EOL care transition. Conclusion. This pilot educational forum on EOL discussions laid a positive foundation for future educational projects. Implications for Research, Policy, or Practice. Preparing nurses to participate in EOL discussions with interdisciplinary colleagues provides empowerment to practice and participate in these conversations. Ongoing professional education related to EOL discussions is necessary to improve the quality of patientand family-centered care. Factors Associated With In-Hospital Death Among ICU Patients Receiving Palliative Care Consultation (S738) Ayano Kiyota, MD, University of Hawaii JABSOM, Honolulu, HI. Christina Bell University of Hawaii JABSOM, Honolulu, HI. Kamal Masaki, MD, University of Hawaii, Honolulu, HI. Daniel Fischberg, MD PhD, University of Hawaii JABSOM, Honolulu, HI. (All authors listed above had no relevant financial relationships to disclose.)

Insights into Patient and Family‐Centered Care Through the Hospital Experiences of Parents

To describe parents' care experiences during hospitalization of their children to identify strategies that could improve the provision of patient and family-centered care (PFCC). A two-phase mixed-method descriptive design was used to explore the inpatient hospital experience of parents of children discharged. During Phase 1, parents participated in semistructured focus groups. During Phase 2, parents completed an inpatient hospital experience survey. A southeastern academic children's hospital (178 beds) with 89% of admissions from within the state and the remainder from around the world. Nine parents participated in one of three semistructured focus groups during Phase 1. During Phase 2, 134 parents completed the inpatient hospital experience survey. Each of three focus groups included three parents. The Children's Hospital Boston Inpatient Experience Survey, designed to measure parent perceptions of care, was distributed to all families of children that were discharged over a 5-month period between March and July 2011. Three themes identified in the focus group data included apprehending the reality, engaging adversity, and advancing forward. Survey findings are organized into eight content areas: care from nurses, care from doctors, working together, child's experience, hospital environment, child medications (safety), arriving at and leaving the hospital, and overall ratings of the experience. The findings of this study support the importance of ongoing evaluation of PFCC initiatives to identify strengths and weaknesses. Suggestions for improvement in patient and family-centered care are provided.

A comprehensive systematic review of visitation models in adult critical care units within the context of patient- and family-centred care

The aim of this review was to appraise and synthesise the best available evidence on visitation models used in adult intensive care units in acute care hospitals and to explicate their congruence with the core concepts of patient- and family-centred care (PFCC). The review considered both quantitative and qualitative studies on visitation models developed within the PFCC model in adult intensive care units in acute care hospitals. The search strategy sought published and unpublished research papers limited to English for the years 1988 through 2009. An initial search of the Joanna Briggs Institute for Evidence-Based Nursing and Midwifery, the Cochrane Library, and PubMed's Clinical Inquiry/Find Systematic Review database was conducted, followed by an analysis of key words contained in the title, abstract and index terms. Following this, an extensive three-stage search was conducted using PubMed, CINAHL, HealthStar, ScienceDirect, Dissertation Abstracts International, DARE, PsycINFO, BioMedCentral, TRIP, Pre-CINAHL, PsycARTICLES, Psychology and Behavioural Sciences Collection, ISI Current Contents, Science.gov, Web of Science/Web of Knowledge, Scirus.com website. Included was a hand search of reference lists of identified papers to capture all pertinent material as well as a search of relevant worldwide websites and search engines, such as Google Scholar and the Virginia Henderson Library of Sigma Theta Tau International. Each paper was assessed independently by two reviewers for methodological quality prior to inclusion in the review using the appropriate critical appraisal instrument. Findings from the qualitative studies were extracted and a synthesis conducted using the QARI (Qualitative Assessment and Review Instrument) software developed by the Joanna Briggs Institute. One synthesis revealed that visiting hours were seen as guidelines for the benefit of nurse and patient, rather than rules or policy. Due to the various types of designs in the available studies, it was not possible to pool quantitative research study results into a statistical meta-analysis. Because statistical pooling was not possible, the findings are presented in a narrative form. Following this, results are presented for their congruence with the principles of PFCC. Flexible visiting policies provide the ability to incorporate the concepts of PFCC into practice. However, nurses believe that while visiting is beneficial to patients, open and/or flexible visiting hours are an impediment to practice and increase their workload. Recommendations for best practice were formulated based on the outcomes and include visiting hours should be used as guidelines, not rules, that allow flexibility dependent upon individual patient/family situation. With regard to congruence with PFCC, patient and family requests for information emerged as an unmet need that needs to be addressed.

Incorporating Patient- and Family-Centered Care Into Resident Education: Approaches, Benefits, and Challenges

A design conference with participants from accredited programs and institutions was used to explore how the principles of patient- and family-centered care (PFCC) can be implemented in settings where residents learn and participate in care, as well as identify barriers to PFCC and simple strategies for overcoming them. In September 2009, the Accreditation Council for Graduate Medical Education (ACGME) held a conference with 74 participants representing a diverse range of educational settings and a group of expert presenters and facilitators. Small group sessions explored the status of PFCC in teaching settings, barriers that need to be overcome in some settings, simple approaches, and the value of a national program and ACGME support. Participants shared information on the state of their PFCC initiatives, as well as barriers to implementing PFCC in the learning environment. These emerged in 6 areas: culture, the physical environment, people, time and other constraints, skills and capabilities, and teaching and assessment, as well as simple strategies to help overcome these barriers. Two Ishikawa (Fishbone) diagrams (one for barriers and one for simple strategies) make it possible to select strategies for overcoming particular barriers. A group of participants with a diversity of approaches to incorporating PFCC into the learning environment agreed that respectful communication with patients/families needs to be learned, supported, and continuously demanded of residents. In addition, for PFCC to be sustainable, it has to be a fundamental expectation for resident learning and attainment of competence. Participants concurred that improving the environment for patients concurrently improves the environment for learners.

Patients First! Engaging the Hearts and Minds of Nurses with a Patient-Centered Practice Model

Like every healthcare system today, the Cleveland Clinic health system is a combination of medical hospitals, institutes, and services in which the implementation of uniform care methodologies faces significant barriers. The guiding principle of the Cleveland Clinic, ‘Patients First,’ focuses on the principle of patient- and family-centered care (PFCC) but deliberately lacks details due to the wide scope of care delivered by the organization. The Stanley Shalom Zielony Institute of Nursing Excellence (the Nursing Institute) at the Cleveland Clinic was charged with standardizing nursing practice across a system with 11,000 registered nurses and 800 advanced practice nurses. The challenge involved providing firm direction on delivering PFCC that was appropriate for all clinical disciplines and could be implemented quickly across existing practices and technologies. Successful implementation required full engagement in the concept of PFCC by what the Institute for Healthcare Improvement has termed the ‘hearts and minds’ of nurses. To achieve these ends, development of a systemwide nursing practice model was initiated. In this article the authors identify the essence of PFCC, consider barriers to PFCC, review their process of developing PFCC, and describe how the Cleveland Clinic health system has implemented a PFCC nursing practice model. In doing so the authors explore how the concept of ‘Passion for Nursing’ was used to stimulate nurse engagement in PFCC.

Patient and Family Shadowing

The Patient- and Family-Centered Care (PFCC) method and practice has been developed over the past 4 years as a means of improving care experiences by viewing all aspects of a patient's care experience through the eyes of the patient and family. One of the most powerful components of the method, evaluating care through patient and family shadowing and the accompanying care experience flow mapping, is described. An overview of the PFCC method can be found in the authors' article in the December 2010 issue.

Development of a Concept Map to Convey Understanding of Patient and Family-Centered Care

Even though the expression "Patient and Family-Centered Care (PFCC)" is widely used, there remains a lack of clarity regarding how the fundamental tenets of PFCC fit with our current model of healthcare. The purpose of this manuscript was to describe the first step in developing an organizational understanding of the operational construct for PFCC utilizing a concept map and the fundamental concept mapping learning theories. The overall goals were to build a more robust organization-wide understanding of the basic PFCC tenets guided by the philosophy of concept mapping. The long-range aspirations of this process are to improve safety and quality of life by incorporating the PFCC philosophy in the career development path of our students and healthcare professionals.

Benchmarking patient‐ and family‐centered care: Highlights from a study of practices in 26 academic medical centers

Patient- and family-centered care (PFCC) is premised on the belief that patients, families, and healthcare providers who are empowered and engaged throughout the healthcare system are integral components, with each vital to the delivery of quality and safe care. Adopting a PFCC culture can result in improved quality, safety, communication, and patient satisfaction. University HealthSystem Consortium hospitals that have adopted these concepts have demonstrated significant improvements. By using an initial survey, developing benchmark parameters, and conducting ongoing analysis and feedback, these hospitals have developed ways to reap many benefits.

Developing a Unit-Based Family Advocacy Board on a Pediatric Intensive Care Unit

Context: The pediatric intensive care unit (PICU) of Stony Brook University Hospital (Stony Brook, NY, USA) developed a family advocacy board to assist staff in providing patientand family-centered care. The PICU Family Advocacy Board works in partnership with the medical center’s leadership to promote and enhance family-centered pediatric care and services. The advocacy board is founded on the understanding that families play a vital role in ensuring the health and well-being of children. Methods: Using the “Are Families Considered Visitors in Our Hospital or Unit?” self-assessment developed by the Institute for Family-Centered Care, we asked pediatric critical care staff to assess how well family presence and participation is supported on the unit. The data obtained from the assessment was used to help determine priorities for the advocacy board. Results: The greatest improvement in the postimplementation assessment concerned questions related to patients and families as advisors. Answers for four questions in this category showed a statistically significant improvement (p ≤ 0.0001) in the postimplementation data in comparison with the preimplementation data. Staff perception of the level of family involvement during anesthesia induction and after induction increased from 42% before implementation to 78% after implementation (p = 0.0343). The perception of inclusion of family members during resuscitation increased from 28% before implementation to 90% after implementation (p ≤ 0.0001). Conclusions: Patients’ family members and unit staff have responded positively to the development of the parent advisory board and the deployment of board members’ recommendations. Family members bring valuable experience and insight into the development of unit processes. Patients’ and family members’ ideas and participation in decision making should be embraced, not feared.

Nursing Autonomy Plays an Important Role in Nurses' Attitudes Toward Caring for Dying Patients

The aim of this study was to clarify the relationship of nursing autonomy and other factors related to attitudes toward caring for dying patients. A cross-sectional survey of nurses was conducted in November 2003 using a self-administered questionnaire. We collected demographic data from 178 (75%) participants and used the Frommelt Attitude Toward Care of the Dying scale, Form B, Japanese version (FATCOD-Form B-J), the Pankratz Nursing Questionnaire (PNQ), and the Death Attitude Inventory (DAI). FATCOD-Form B-J measures nurse's attitude toward caring for dying patients. It includes two subscales: positive attitude toward caring for the dying patient and perception of patient- and family-centered care. The PNQ measures nursing autonomy of individual nurses and has three subscales: nursing autonomy and advocacy, patients' rights, and rejection of traditional role limitations. The DAI measures attitudes toward death in context of Japanese cultural characteristics. It includes seven subscales: afterlife beliefs, death anxiety, death relief, death avoidance, life purpose, death concern, and supernatural beliefs. We investigated the factors associated with the FATCOD-Form B-J. Support of a mentor regarding end-of-life issues (beta = .19, P = .001), death avoidance domain of the DAI (beta = -.14, P = 0.03), life purpose domain of the DAI (beta = .23, P = .001), and rejection of traditional role limitations domain of the PNQ (beta = .51, P = .001) were selected as significant independent variables by multivariate analysis to evaluate nurses' positive attitudes toward caring for dying patients. Death anxiety domain of the DAI (beta = -.17, P = .02), patients' rights domain of the PNQ (beta =.46, P = .001), and rejection of traditional role limitations domain of the PNQ (beta = .34, P = .001) were selected as significant independent variables by multivariate analysis to evaluate the nurses' perception of patient-and family-centered care. In conclusion, nursing autonomy plays an important role in the attitudes of Japanese nurses who care for dying patients. Educational and administrative efforts to strengthen nursing autonomy are necessary.