JONA Volume 45, Number 1, pp 28-34 Copyright B 2015 Wolters Kluwer Health | Lippincott Williams & Wilkins
THE JOURNAL OF NURSING ADMINISTRATION
Policy to Practice Increased Family Presence and the Impact on Patient- and Family-Centered Care Adoption Robin Gasparini, DNP, RN Mary Champagne, PhD, RN, FAAN Alyssa Stephany, MD
John Hudson, PhD, RN, NEA-BC Mary Ann Fuchs, DNP, RN, NEA-BC, FAAN
OBJECTIVE: This quality improvement study introduced 24/7 family presence and measured its impact in 3 categories; perceptions, complaints, and patient experience scores. This article offers insight for leaders into the 1st phase of patient- and family-centered care (PFCC) adoption. BACKGROUND: Family presence improves patient safety and satisfaction; however, 70% of US healthcare organizations maintain restrictive visitation policies. METHODS: We surveyed nursing staff 6 months postinnovation to determine staff knowledge, implementation practices, and perceived challenges to implementation. We surveyed system leaders regarding PFCC transformation and trended formal complaints and patient experience scores after family presence innovation. RESULTS: Findings provide insight for leaders into family presence policy adherence challenges experienced by staff. Leaders perceived significant transformation toward PFCC adoption postinnovation. Complaints increased postinnovation, and patient experience scores demonstrated positive trends.
CONCLUSIONS: We gained insight regarding challenges to policy adherence and identified next steps for leaders in the transformation toward PFCC adoption.
Author Affiliations: Strategic Services Associate (Dr Gasparini) and Vice President of Patient Care & System Chief Nurse Executive (Dr Fuchs), Duke University Health System; Laurel Chadwick Professor of Nursing and Former Dean (Dr Champagne), School of Nursing, Duke University; Assistant Professor of Pediatrics & Internal Medicine (Dr Stephany), Departments of Pediatrics & Internal Medicine, Duke University Hospital; and Associate Chief Nursing Officer (Dr Hudson), Duke Regional Hospital, Durham, North Carolina. The authors declare no conflicts of interest. Correspondence: Dr Gasparini, Duke University Health System, DUMC Box 3543, Duke North Erwin Rd, Durham, NC 27710 ([email protected]). DOI: 10.1097/NNA.0000000000000152
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Open visitation policies increase family perception of provider/caregiver interest, family/provider trust, and actual time dedicated to provider/family communication.1 Family presence decreases family anxiety, thus increasing the perception of care delivery and overall satisfaction.2 Limits on visiting hours, including or the number and age of visitors, put patients at increased risk for errors, contribute to patient and family emotional suffering, create distrust between staff and families, and decrease patient and family satisfaction regarding their experience.3,4 Increased family presence improves the management of chronic and acute illnesses, enhances continuity of care, prevents hospital readmissions, and provides opportunity for cost savings.1,2 Current reconsideration of restrictive visitation policies comes at a time when healthcare organizations are facing increasing pressure from the federal government to provide patient- and family-centered care (PFCC). In this model, effective 24/7 family presence policies play a central role.4 The Affordable Care Act has launched a new era of consumer-centric healthcare where payers calculate reimbursements based on an organization’s performance scores on predetermined quality goals for safe, effective, patient-centered, timely, efficient, and equitable care delivery.5-7 Patient and family perceptions of the care experience, as measured by the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, represent 30% of a care organization’s total performance score, providing healthcare systems with a major financial as
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well as ethical incentive to improve patient and family satisfaction.5,8 Despite new incentive structures, growing external pressures, and the evidence of a direct relationship between open visitation policies and increased patient satisfaction with the care experience, more than 70% of organizations in the United States continue to place restrictions around family presence.2 Restrictions are often defended as necessary safety and security measures to protect patients from infection and errors in care resulting when task-driven clinicians report being distracted by family presence.2,3 Recognizing that fundamental change is necessary to move away from the view that families are visitors rather than respected care partners, The Joint Commission recently mandated that organizations comply with standards supporting the patient’s choice of family presence during hospitalization.2,4,7
Case Example A large academic medical center in the Southeast region of the United States recognized for delivering exceptional clinical care was among the 70% of US healthcare organizations without open visitation.2 These restrictions create insufficient provider communications with family members, including failures to meet 1 or more of the basic needs family members consistently rank as most important: (a) being notified about changes in the patient’s condition; (b) feeling that hospital personnel are providing the best possible care to the patient; (c) knowing the expected outcome or prognosis; and (d) knowing specific facts concerning the patient’s progress.9 As with many centers of this size, visitation policy was inconsistent across the center’s 3 hospitals and inconsistent unit-to-unit within a single hospital. For example, while visitors were required to follow a number of restrictions in ICU settings (ie, no overnight guests, 2 visitors at a time for 15-minute visits each hour, no children aged G12 years permitted, and no admittance during medication administration, baths, assessments, or procedures), other units had fewer restrictions or were more lenient with open visitation. These discrepancies contributed to patient and family dissatisfaction and led to inconsistencies in family member communication. Study Aims This quality improvement (QI) study introduced an evidence-based, PFCC best practice, 24/7 family presence, at a large academic medical center.2 We evaluated the impact of the PFCC innovation on (1) an interprofessional team of health system PFCC leaders’ perception of PFCC transformation; (2) the number of formally reported patient complaints in categories
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specific to communication with family members; and (3) patient satisfaction with communication and family inclusion measured via HCAHPS questionnaire. Specific HCAHPS questions included question 2, ‘‘During your hospital stay, how often did nurses listen carefully to you?’’ and question 23, ‘‘During this hospital stay, staff took my preferences and those of my family or caregiver into account in deciding what my healthcare needs would be when I left.’’ In addition, we surveyed nursing staff 6 months postinnovation to determine staff knowledge, implementation practices, and perceived challenges to the family presence policy.
The Intervention A team of health system interprofessionals reviewed family presence literature and benchmarked visitation policies with well-established PFCC organizations and similar academic medical institutions to identify common practices, successes, and barriers to implementation. A new family presence policy replaced the previous visitation policy and was initiated simultaneously with the opening of a new hospital bed tower. The philosophy of the new policy was to provide a safe and secure environment for patients, families, support persons, and members of the healthcare team and provide equal family presence for all families, loved ones, and designated support persons. The policy incorporated evidence-based PFCC tactics, including (1) 24/7 presence for family/support persons, (2) open to children accompanied by a nonpatient responsible adult, (3) open to overnight family/support, and (4) encouraged presence and participation during all aspects of care delivery. Limitations in family presence remained for infection control risks such as presence of flulike symptoms. The policy empowers staff to set expectations with patients and families regarding bedside presence and encouraged the use of the appropriate chain of command to manage concerns. Leaders and stakeholders throughout the health system, including executive leadership, medical providers, nursing shared governance structures, and patient and family advisors, approved the vetted policy. During the vetting process, staff voiced perceived challenges to include burdensome and imposing families requiring staff attention and preventing care from being directed to the patient, managing family access to copious amounts of information, violations to HIPAA, and environment of care or limited family space in the existing bed towers.
Methods This study was approved by the organization’s institutional review board. The study setting included interprofessionals from the health system, including
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3 hospitals and other outpatient services. All other data were collected from the flagship hospital, a tertiary and quaternary care, 957-bed university hospital containing 26 inpatient adult and 7 pediatric inpatient units.
Lastly, 2 questions evaluated staff’s ability to practice early identification of support persons to participate in their loved one’s care.
Measuring Implementation Measuring Impact on Perceived Organizational Transformation A team of health system PFCC leaders used the Strategies for Leadership Patient- and Family-Centered Care, A Hospital Self-assessment Inventory developed by the American Hospital Association in partnership with the Institute for Patient- and Family-Centered Care to measure the intervention’s impact on organizational transformation toward PFCC adoption.10 The Hospital Self-assessment Inventory, designed to help hospital and health system leaders, trustees, medical staff, employees, and patient advisors consider how a hospital operationalizes PFCC, is repeated every 18 to 24 months.10 Approximately 30 interprofessional PFCC leaders (ie, chief nursing executives, hospital president, vice presidents, medical staff, patient safety and quality directors, nursing practice directors, staff relations, service excellence champions, and patient and family advisors) responded to the 127-question survey preinnovation and postinnovation 2 years apart (18 months prior to and 6 months after implementation). The 127-questions are ranked on a 5-point Likert scale, with a response of 1 = indicating the organization has not at all adopted this behavior, 3 = the behavior was somewhat adopted, and 5 = the behavior was very well adopted. The questions were divided into 10 sections: leadership, mission and definition of quality, charting and documentation, patient and families as advisors, patient and family support, patterns of care, QI, information/education for patients and families, personnel, and environment and design.10 The team identified 18 questions spanning 5 different categories as critical components for a successful family presence innovation and analyzed differences in scores using a Mann-Whitney U nonparametric test. Two questions captured leadership’s ability to convey consistently the importance of the patients’ perception and the encouragement of family support in all aspects of care. Three questions evaluate the organization’s mission statement for inclusive language regarding the importance of a broad definition of families. Nine questions evaluate patterns of care delivery specific to how families are viewed in practice, opposed to policy. Questions include the presence and participation of family members during various care routines such as rounds and activities of daily living. Two questions evaluate the existence of communication systems providing quality and timely information to patients and families.
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A survey to conduct a baseline assessment of implementation practices 6 months after intervention was electronically distributed to a broad representation of 1338 nursing services staff (ie, RNs, nursing care assistants, health unit coordinators, and nursing leaders). Thirty-four percent of staff voluntarily completed the 8-question survey managed using REDCap electronic data capture software.11
Measuring Impact on Formal Complaints Prior to the intervention, this organization received an average of 115 formal patient complaints annually in 5 categories: (1) communication with family members, (2) privacy of communications, (3) willingness to answer questions, (4) visitation concerns, and (5) waiting room discomfort. The Feedback Monitor Pro (version 4.23.1; RL Solutions, Toronto, Canada) software system houses manually entered formal complaints. We retrospectively pulled complaint data in the 5 categories September through December (preinnovation 2012 and postinnovation 2013), to identify impact. A # 2 nonparametric test assessed for significant differences in the same 4-month period preintervention and postintervention using the months’ number of discharges as a denominator.
Measuring Impact on Consumer Perception HCAHPS Scores The impact that increased family presence had on communication and family inclusion was measured using the publically reported HCAHPS questionnaire (version July 2012).8 This survey samples discharged hospitalized adults, measuring their perception of the care experience. Performance scores for reimbursement measure ‘‘top-box’’ scores, indicating how often patients select the most positive response. This organization has a 30% to 35% HCAHPS response rate, comparable to national standards reported by CMS.8 Of the 32-question survey, 2 questions are indirectly impacted by the intervention and were trended for significant differences: question 2, ‘‘During your hospital stay, how often did nurses listen carefully to you?’’ and question 23, ‘‘During this hospital stay, staff took my preferences and those of my family or caregiver into account in deciding what my healthcare needs would
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be when I left.’’ We analyzed top-box scores using a # 2 nonparametric test in the 4-month period postinnovation, September through December 2013, and compared with the same months preintervention, 2012.
statistically different findings in the information/ education for patients and families category. Two of 9 questions in patterns of care had statistically significant differences in scores.
Results
Implementation Practices, Inconsistencies, and Barriers
The 18 Self-assessment Inventory questions for health system leaders revealed significant differences in scores in 9 questions (50%), spanning 4 categories (Table 1). Three categories, leadership, mission, and patient and family support, had statistically significant differences in scores in all identified questions. There were no
The survey sent to a broad representation of 1 338 nursing staff yielded a 34.1% (n = 457) response rate, producing 446 usable surveys; 11 surveys were discarded because of missing data fields. Of the 446 respondents, 109 (24.4%) reported they were unaware
Table 1. Difference in Self-assessment Inventory Mean and Median Score Measuring Leader Perception of Organizational Transformation Preintervention
Leadership Q2 Q4 Mission Q13 Q14 Q15
Postintervention
Question Content
Mean
SD
Median
Mean
SD
Median
P
Leaders convey patient experience is important to quality and safety Leaders encourage patient collaboration at all levels of care
3.35
0.933
4.00
4.10
0.768
4.00
.015a
2.90
0.7182
3.00
3.59
0.6661
3.50
.005a
Articulates a broad definition of family Articulates the importance of families Articulates the importance of collaborating with patients and families
2.90 2.53 2.35
1.119 0.964 1.040
3.00 3.00 2.00
4.62 4.14 3.90
0.669 1.082 0.968
5.00 4.50 4.00
.000a .000a .000a
2.94
1.110
3.00
3.80
0.951
4.00
.020a
3.47
0.874
3.00
4.05
0.887
4.00
.085
3.72
1.018
3.00
4.30
0.733
4.00
.082
3.00
1.016
3.00
3.35
0.902
3.00
.460
2.72
0.752
3.00
3.00
0.649
3.00
.264
2.76
0.903
3.00
3.85
0.933
4.00
.002a
2.73
0.961
3.00
3.06
0.416
3.00
.290
2.88
0.967
3.00
3.17
0.618
3.00
.273
2.80
0.941
3.00
3.22
0.732
3.00
.166
3.00
0.594
3.00
3.14
0.478
3.00
.530
3.07
0.594
3.00
3.25
0.967
3.00
.755
2.75
1.183
2.50
4.50
0.761
5.00
.000a
3.44
.814
3.50
4.26
0.733
4.00
.008a
Patterns of care Q44 Families are not visitors; they are always welcome to be with the patient Q45 Families can remain with the patient during nurse change of shift Q46 Families can remain with the patient during rounds Q52 Patients and families are viewed as integral members of the team Q58 Families have the opportunity to participate in interdisciplinary meetings Q59 Systems in place to encourage communication Q63 Staff ask patients and families about their observations, goals, and priorities Q64 Staff acknowledge the individuality, culture, and capacity of each family Q69 Families are encouraged to participate in discharge planning Information for patients and families Q71 Open and honest communication among patients, families, and staff Q73 Practices encourage patient and family involvement in decision making Patient and family support Q90 Staff practices and policies reflect a broad definition of family Q91 Staff ask patients to identify support people who will participate in care. a
Statistically significant findings at .05 level.
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the family presence policy existed and were exempt from answering any additional questions. We disqualified 14 additional respondents because of failed branching logic, allowing respondents to move forward even though they answered they were unaware the policy existed. Of the remaining 337 respondents, 217 (64.3%) felt the policy was fairly consistently to consistently followed (mean score of 2.07 on a 1- to 3-point scale, [1] consistently, [2] fairly consistently, [3] inconsistently followed). Greater than 90.8% of the 307 respondents aware of the policy also had knowledge of all components in the policy; 98% were aware the policy addressed support persons, 94.8% were aware the policy addressed overnight support, and 90.8% were aware the policy addressed the presence of children. Seventy percent of these staff (70.1%) adopted 24/7 presence of support persons and follow this policy consistently, whereas 71.1% adopted the presence of overnight guest and follow this policy consistently. Conversely, 48.9% of the respondents report adopting the presence of children consistently. The majority of respondents indicated 11 items as presenting challenges to policy adherence. However, when asked to identify the top 3 barriers to adherence, 59.3% (168/283) reported inadequate space or environment as the no. 1 barrier followed by challenging families ranked at 53.9% (150/283). The 3rd ranked barrier at 27.9% (79/283) was expectation setting with families. Falling below 20% in ranked order were the last 8 identified barriers to policy adherence: 4th, infection control; 5th, workflow changes; 6th, workload; 7th, unavailable families; 8th, patient security concerns; 9th, unit culture; 10th, abstract policy; and 11th, other disciplines verbally contradicting written policy. Lastly, 87.0% of survey respondents (221/254) aware of the policy indicated support for the family presence policy.
Impact on Formal Complaints We received a minimal number of formal complaints preinnovation and postinnovation in the identified categories. Complaints during the months of September through December yielded 13 formal complaints in 2012 and 63 in 2013. After further review of complaint descriptions, 10 were eliminated because of duplicative entries or policies broader than the family presence scope, for example, a family member denied visitation for a patient in police custody, modifying the number of formal complaints to 10 preinnovation and 56 postinnovation. Complaint data were statistically significant (P = .001) for an increase in complaints postinnovation. In 2012, failure to notify the patient’s family after transfer accounted for 12.5% of formal complaints, compared with 26.2% in 2013.
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Impact on Consumer Perception HCAHPS Scores HCAHPS results demonstrated positive trends toward the desired direction in both questions postinnovation (Figures 1 and 2). The # 2 nonparametric test found no statistically significant differences in top-box scores when compared preintervention and postinnovation or in the total 4-month period preintervention and postintervention.
Discussion There are many insights institutions can gain from this study. Approximately 24.4% of surveyed staff were unaware the new policy existed, indicating a need for additional unit-level education. Of frontline staff aware of the policy, responses provided insight into daily challenges. Whereas 87.0% of staff were supportive of the policy and 70.1% reported full and consistent adoption, staff face a number of daily challenges impacting policy adherence. Two barriers stood out as significant requiring additional support and resources: inadequate space and environment and challenging families. Little flexibility exists regarding space design; however, staff perceptions of challenging families are concerning. It is unclear whether these perceptions are from discerning staff or challenges fueled by inattentive or lack of expectation setting by hospital staff early in the acute phase of care. Although expected findings, the rankings of these findings differed from local staff focus group concerns identified when vetting the new policy and differed from literature indicating restrictions are defended because of infection control (ranked 4th by our staff) and safety and security measures (ranked 8th by our staff).2,3 General comments left by staff at the end of the survey indicate confusion between operationalizing PFCC and family presence, often misusing terms interchangeably. In reviewing comments, staff loosely interpret family presence as providing families ‘‘free
Figure 1. Percentage of top-box results for question 2, ‘‘Nurses listen carefully to you,’’ preintervention and postintervention.
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Figure 2. Percentage of top-box results for question 23, ‘‘Hospital staff took family preferences into account regarding health care decisions,’’ preintervention and postintervention.
range’’ of the organization and feel a lack of empowerment to set expectations in fear of violating the PFCC concept. The lack of boundary setting demonstrates a knowledge deficit regarding the definition of PFCC and likely impacts the increased perception of challenging or imposing families. In addition, general comments expressed concerns regarding appropriateness of children’s presence because of psychological and infection control concerns despite no evidence supporting increased risks for children or patients.12,13 Opportunity exists for executive leaders to reinforce the organization’s mission and vision, role model behaviors, and provide realistic solutions to daily challenges faced by frontline staff. Patient’s testimonials are powerful prompts for influencing change; integrating these stories and listening to patients through established advisory boards or meetings populated with patient advisors provide transformational dialogue regarding the care experience and may provide examples of these realistic solutions. Leaders should encourage staff to customize workflows based on unique patient/family emotion and clinical needs, reducing patient/family demands, thereby positively influencing staff’s perception and execution of care.14 Resources for working with challenging families, embraced by leaders, can also be made available for staff. Customizing care to meet unique needs requires the commitment and support of every team member, department, and leader.14 Lastly, leaders should be sensitive to number of competing priorities across the organization that take away from more elusive PFCC goals toward a cultural shift. The interprofessional team of health system PFCC leaders significantly shifted their perception of PFCC transformation postinnovation, specifically in leadership, mission, and patient and family support. This validates the work of a unified leadership team who
JONA Vol. 45, No. 1 January 2015
casted the vision for PFCC adoption. Strength in the 2 categories of leadership sand mission was critical for transforming organizational culture and in both implementation and 6-month intervention sustainability. While leaders’ perception significantly improved in questions supporting family presence infrastructure, the median perception scores did not shift in questions pertaining to translation of PFCC principles to clinical practice. Of the 18 identified questions, only 4 PFCC principles translation to bedside questions were significant, alluding to barriers faced by frontline staff. Despite a supportive infrastructure to welcome and identify (a broad definition of) family and provide systems to encourage communication, nonsignificant assessment results indicate family presence does not equate to patient and family participation in care. This was an expected finding likely related to the newness of the intervention and supportive communication systems. Improvements in participation are probable with subsequent phases of PFCC adoption, that is, adoption of additional evidencebased PFCC practices such as bedside shift report and PFCC physician rounding.14 Continued efforts to translate executive leadership’s vision to frontline staff are imperative in shifting focus to providing families the option to participate in their loved one’s care. While numbers are low, formal complaint data increased after intervention. Complaint descriptions provided important insight into organizational trends such as notifying families at time of patient transfer. Despite recent adoption of systems facilitating communication (eg, electronic health record, bedside computers, and daily plan of care whiteboards), we found evidence in the self-assessment inventory indicating failure to invite patients and families to participate in care. Patients and families expect these tools to provide information, and failing to incorporate tools for information sharing potentially contributed to inadequate communication perceptions. Communicating and encouraging participation in care delivery require workflow modifications. According to the staff survey, only 20% of staff indicated workflow changes as a barrier, indicating many staff may have maintained existing workflows. Lastly, the recent adoption of a system-wide electronic health record likely contributed to increased communication-related complaints. Limitations Validity and reliability testing do not exist for the Hospital Self-assessment Inventory. Formal complaints received were minimal and may not be representative of patients’ and families’ perceptions. Lastly, many factors affect HCAHPS scores, and a causal relationship cannot be linked to any single intervention.
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Conclusion Family presence decreases family anxiety, thereby improving the perception of care delivery and overall patient satisfaction.1-4,7,14,15 Removing visitation restrictions and encouraging family presence are an important 1st step toward PFCC transformation. This QI project provided insight into staff challenges and organizational adoption of PFCC by focusing on family presence impact on leaders’ perception and staff adherence to policy. Findings suggested statistically significant
improvements toward organizational transformation postintervention. Although small, improvements in HCAHPS scores support efforts to include families as extensions of the care team, improving both patient perception of care delivery and patient safety. This organization’s experience can be applied to others furthering their journey to become more patient and family centered. Continued efforts to implement evidencebased PFCC best practice tactics and conduct incremental measurements of success are necessary next steps for achieving recognition as a leading PFCC organization.
References 1. Schnell D, Abadie S, Toullic P, et al. Open visitation policies in the ICU: experience from relatives and clinicians. Intensive Care Med. 2013;39(10):1873-1874. 2. American Association of Critical-Care Nurses. AACN Practice Alert. Family presence: visitation in the adult ICU. Published November 2011. http://www.aacn.org/wd/practice/content/ practicealerts/family-visitation-icu-practice-alert.pcms?menu= practice. Accessed March 13, 2013. 3. Liu V, Read JL, Scruth E, Cheng E. Visitation policies and practices in US ICUs. Crit Care. 2013;17(2):R71. 4. The Institute for Patient and Family Centered Care. Changing hospital ‘‘visiting’’ policies and practices: supporting family presence and participation. Updated June 2012. http://www .ipfcc.org/advance/topics/supporting-family-presence.html. Accessed August 5, 2013. 5. Healthcare.gov. Key features of the affordable care act, by year. Published March 2010. www.healthcare.gov/law/timeline/full.html. Accessed January 14, 2013. 6. Institute of Medicine: Committee on Quality Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington DC: The National Academies Press; 2001. 7. Wang MC, Hyun JK, Harrison MI, Shortell M, Fraser I. Redesigning health systems for quality: lessons from emerging practices. Jt Comm J Qual Patient Saf. 2006;32(11):599-611. 8. Centers for Medicare & Medicaid Services, Baltimore, MD. Executive summary. Revised February 2014. http://www.hcahps online.org. Accessed March 25, 2014.
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9. Fitzpatrick E, Hinkle JL, Oskrochi GR. Identifying the perception of needs of family members visiting and nurses working in the intensive care unit. J Neurosci Nurs. 2009;41(2): 85-92. 10. The Institute for Patient and Family Centered Care. Strategies for Leadership: Patient and Family Centered Care, A Hospital Self-assessment Inventory. Published January 2004. http:// www.aha.org/advocacy-issues/quality/strategies-patient centered.shtml. Accessed February 15, 2013. 11. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)Va metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2): 377-381. 12. Hanley JB, Piazza J. A visit to the intensive care unit: a familycentered culture change to facilitate pediatric visitation in an adult intensive care unit. J Crit Care Nurs Q. 2012;35(1):113-122. 13. Kean S. Children and young people’s strategies to access information during a family member’s critical illness. J Clin Nurs. 2010;19(1):266-274. 14. Taylor J, Rutherford P. The pursuit of genuine partnerships with patients and family members: the challenge and opportunity for executive leaders. Front Health Serv Manage. 2010; 26(4):3-14. 15. The Joint Commission. R3 Report. Requirement, Rationale, Reference: A Complimentary Publication of The Joint Commission. Oakbrook Terrace, IL: Department of Publication and Education. Published February 9, 2011.
JONA Vol. 45, No. 1 January 2015
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
THE JOURNAL OF NURSING ADMINISTRATION
Policy to Practice Increased Family Presence and the Impact on Patient- and Family-Centered Care Adoption Robin Gasparini, DNP, RN Mary Champagne, PhD, RN, FAAN Alyssa Stephany, MD
John Hudson, PhD, RN, NEA-BC Mary Ann Fuchs, DNP, RN, NEA-BC, FAAN
OBJECTIVE: This quality improvement study introduced 24/7 family presence and measured its impact in 3 categories; perceptions, complaints, and patient experience scores. This article offers insight for leaders into the 1st phase of patient- and family-centered care (PFCC) adoption. BACKGROUND: Family presence improves patient safety and satisfaction; however, 70% of US healthcare organizations maintain restrictive visitation policies. METHODS: We surveyed nursing staff 6 months postinnovation to determine staff knowledge, implementation practices, and perceived challenges to implementation. We surveyed system leaders regarding PFCC transformation and trended formal complaints and patient experience scores after family presence innovation. RESULTS: Findings provide insight for leaders into family presence policy adherence challenges experienced by staff. Leaders perceived significant transformation toward PFCC adoption postinnovation. Complaints increased postinnovation, and patient experience scores demonstrated positive trends.
CONCLUSIONS: We gained insight regarding challenges to policy adherence and identified next steps for leaders in the transformation toward PFCC adoption.
Author Affiliations: Strategic Services Associate (Dr Gasparini) and Vice President of Patient Care & System Chief Nurse Executive (Dr Fuchs), Duke University Health System; Laurel Chadwick Professor of Nursing and Former Dean (Dr Champagne), School of Nursing, Duke University; Assistant Professor of Pediatrics & Internal Medicine (Dr Stephany), Departments of Pediatrics & Internal Medicine, Duke University Hospital; and Associate Chief Nursing Officer (Dr Hudson), Duke Regional Hospital, Durham, North Carolina. The authors declare no conflicts of interest. Correspondence: Dr Gasparini, Duke University Health System, DUMC Box 3543, Duke North Erwin Rd, Durham, NC 27710 ([email protected]). DOI: 10.1097/NNA.0000000000000152
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Open visitation policies increase family perception of provider/caregiver interest, family/provider trust, and actual time dedicated to provider/family communication.1 Family presence decreases family anxiety, thus increasing the perception of care delivery and overall satisfaction.2 Limits on visiting hours, including or the number and age of visitors, put patients at increased risk for errors, contribute to patient and family emotional suffering, create distrust between staff and families, and decrease patient and family satisfaction regarding their experience.3,4 Increased family presence improves the management of chronic and acute illnesses, enhances continuity of care, prevents hospital readmissions, and provides opportunity for cost savings.1,2 Current reconsideration of restrictive visitation policies comes at a time when healthcare organizations are facing increasing pressure from the federal government to provide patient- and family-centered care (PFCC). In this model, effective 24/7 family presence policies play a central role.4 The Affordable Care Act has launched a new era of consumer-centric healthcare where payers calculate reimbursements based on an organization’s performance scores on predetermined quality goals for safe, effective, patient-centered, timely, efficient, and equitable care delivery.5-7 Patient and family perceptions of the care experience, as measured by the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, represent 30% of a care organization’s total performance score, providing healthcare systems with a major financial as
JONA Vol. 45, No. 1 January 2015
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
well as ethical incentive to improve patient and family satisfaction.5,8 Despite new incentive structures, growing external pressures, and the evidence of a direct relationship between open visitation policies and increased patient satisfaction with the care experience, more than 70% of organizations in the United States continue to place restrictions around family presence.2 Restrictions are often defended as necessary safety and security measures to protect patients from infection and errors in care resulting when task-driven clinicians report being distracted by family presence.2,3 Recognizing that fundamental change is necessary to move away from the view that families are visitors rather than respected care partners, The Joint Commission recently mandated that organizations comply with standards supporting the patient’s choice of family presence during hospitalization.2,4,7
Case Example A large academic medical center in the Southeast region of the United States recognized for delivering exceptional clinical care was among the 70% of US healthcare organizations without open visitation.2 These restrictions create insufficient provider communications with family members, including failures to meet 1 or more of the basic needs family members consistently rank as most important: (a) being notified about changes in the patient’s condition; (b) feeling that hospital personnel are providing the best possible care to the patient; (c) knowing the expected outcome or prognosis; and (d) knowing specific facts concerning the patient’s progress.9 As with many centers of this size, visitation policy was inconsistent across the center’s 3 hospitals and inconsistent unit-to-unit within a single hospital. For example, while visitors were required to follow a number of restrictions in ICU settings (ie, no overnight guests, 2 visitors at a time for 15-minute visits each hour, no children aged G12 years permitted, and no admittance during medication administration, baths, assessments, or procedures), other units had fewer restrictions or were more lenient with open visitation. These discrepancies contributed to patient and family dissatisfaction and led to inconsistencies in family member communication. Study Aims This quality improvement (QI) study introduced an evidence-based, PFCC best practice, 24/7 family presence, at a large academic medical center.2 We evaluated the impact of the PFCC innovation on (1) an interprofessional team of health system PFCC leaders’ perception of PFCC transformation; (2) the number of formally reported patient complaints in categories
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specific to communication with family members; and (3) patient satisfaction with communication and family inclusion measured via HCAHPS questionnaire. Specific HCAHPS questions included question 2, ‘‘During your hospital stay, how often did nurses listen carefully to you?’’ and question 23, ‘‘During this hospital stay, staff took my preferences and those of my family or caregiver into account in deciding what my healthcare needs would be when I left.’’ In addition, we surveyed nursing staff 6 months postinnovation to determine staff knowledge, implementation practices, and perceived challenges to the family presence policy.
The Intervention A team of health system interprofessionals reviewed family presence literature and benchmarked visitation policies with well-established PFCC organizations and similar academic medical institutions to identify common practices, successes, and barriers to implementation. A new family presence policy replaced the previous visitation policy and was initiated simultaneously with the opening of a new hospital bed tower. The philosophy of the new policy was to provide a safe and secure environment for patients, families, support persons, and members of the healthcare team and provide equal family presence for all families, loved ones, and designated support persons. The policy incorporated evidence-based PFCC tactics, including (1) 24/7 presence for family/support persons, (2) open to children accompanied by a nonpatient responsible adult, (3) open to overnight family/support, and (4) encouraged presence and participation during all aspects of care delivery. Limitations in family presence remained for infection control risks such as presence of flulike symptoms. The policy empowers staff to set expectations with patients and families regarding bedside presence and encouraged the use of the appropriate chain of command to manage concerns. Leaders and stakeholders throughout the health system, including executive leadership, medical providers, nursing shared governance structures, and patient and family advisors, approved the vetted policy. During the vetting process, staff voiced perceived challenges to include burdensome and imposing families requiring staff attention and preventing care from being directed to the patient, managing family access to copious amounts of information, violations to HIPAA, and environment of care or limited family space in the existing bed towers.
Methods This study was approved by the organization’s institutional review board. The study setting included interprofessionals from the health system, including
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3 hospitals and other outpatient services. All other data were collected from the flagship hospital, a tertiary and quaternary care, 957-bed university hospital containing 26 inpatient adult and 7 pediatric inpatient units.
Lastly, 2 questions evaluated staff’s ability to practice early identification of support persons to participate in their loved one’s care.
Measuring Implementation Measuring Impact on Perceived Organizational Transformation A team of health system PFCC leaders used the Strategies for Leadership Patient- and Family-Centered Care, A Hospital Self-assessment Inventory developed by the American Hospital Association in partnership with the Institute for Patient- and Family-Centered Care to measure the intervention’s impact on organizational transformation toward PFCC adoption.10 The Hospital Self-assessment Inventory, designed to help hospital and health system leaders, trustees, medical staff, employees, and patient advisors consider how a hospital operationalizes PFCC, is repeated every 18 to 24 months.10 Approximately 30 interprofessional PFCC leaders (ie, chief nursing executives, hospital president, vice presidents, medical staff, patient safety and quality directors, nursing practice directors, staff relations, service excellence champions, and patient and family advisors) responded to the 127-question survey preinnovation and postinnovation 2 years apart (18 months prior to and 6 months after implementation). The 127-questions are ranked on a 5-point Likert scale, with a response of 1 = indicating the organization has not at all adopted this behavior, 3 = the behavior was somewhat adopted, and 5 = the behavior was very well adopted. The questions were divided into 10 sections: leadership, mission and definition of quality, charting and documentation, patient and families as advisors, patient and family support, patterns of care, QI, information/education for patients and families, personnel, and environment and design.10 The team identified 18 questions spanning 5 different categories as critical components for a successful family presence innovation and analyzed differences in scores using a Mann-Whitney U nonparametric test. Two questions captured leadership’s ability to convey consistently the importance of the patients’ perception and the encouragement of family support in all aspects of care. Three questions evaluate the organization’s mission statement for inclusive language regarding the importance of a broad definition of families. Nine questions evaluate patterns of care delivery specific to how families are viewed in practice, opposed to policy. Questions include the presence and participation of family members during various care routines such as rounds and activities of daily living. Two questions evaluate the existence of communication systems providing quality and timely information to patients and families.
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A survey to conduct a baseline assessment of implementation practices 6 months after intervention was electronically distributed to a broad representation of 1338 nursing services staff (ie, RNs, nursing care assistants, health unit coordinators, and nursing leaders). Thirty-four percent of staff voluntarily completed the 8-question survey managed using REDCap electronic data capture software.11
Measuring Impact on Formal Complaints Prior to the intervention, this organization received an average of 115 formal patient complaints annually in 5 categories: (1) communication with family members, (2) privacy of communications, (3) willingness to answer questions, (4) visitation concerns, and (5) waiting room discomfort. The Feedback Monitor Pro (version 4.23.1; RL Solutions, Toronto, Canada) software system houses manually entered formal complaints. We retrospectively pulled complaint data in the 5 categories September through December (preinnovation 2012 and postinnovation 2013), to identify impact. A # 2 nonparametric test assessed for significant differences in the same 4-month period preintervention and postintervention using the months’ number of discharges as a denominator.
Measuring Impact on Consumer Perception HCAHPS Scores The impact that increased family presence had on communication and family inclusion was measured using the publically reported HCAHPS questionnaire (version July 2012).8 This survey samples discharged hospitalized adults, measuring their perception of the care experience. Performance scores for reimbursement measure ‘‘top-box’’ scores, indicating how often patients select the most positive response. This organization has a 30% to 35% HCAHPS response rate, comparable to national standards reported by CMS.8 Of the 32-question survey, 2 questions are indirectly impacted by the intervention and were trended for significant differences: question 2, ‘‘During your hospital stay, how often did nurses listen carefully to you?’’ and question 23, ‘‘During this hospital stay, staff took my preferences and those of my family or caregiver into account in deciding what my healthcare needs would
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be when I left.’’ We analyzed top-box scores using a # 2 nonparametric test in the 4-month period postinnovation, September through December 2013, and compared with the same months preintervention, 2012.
statistically different findings in the information/ education for patients and families category. Two of 9 questions in patterns of care had statistically significant differences in scores.
Results
Implementation Practices, Inconsistencies, and Barriers
The 18 Self-assessment Inventory questions for health system leaders revealed significant differences in scores in 9 questions (50%), spanning 4 categories (Table 1). Three categories, leadership, mission, and patient and family support, had statistically significant differences in scores in all identified questions. There were no
The survey sent to a broad representation of 1 338 nursing staff yielded a 34.1% (n = 457) response rate, producing 446 usable surveys; 11 surveys were discarded because of missing data fields. Of the 446 respondents, 109 (24.4%) reported they were unaware
Table 1. Difference in Self-assessment Inventory Mean and Median Score Measuring Leader Perception of Organizational Transformation Preintervention
Leadership Q2 Q4 Mission Q13 Q14 Q15
Postintervention
Question Content
Mean
SD
Median
Mean
SD
Median
P
Leaders convey patient experience is important to quality and safety Leaders encourage patient collaboration at all levels of care
3.35
0.933
4.00
4.10
0.768
4.00
.015a
2.90
0.7182
3.00
3.59
0.6661
3.50
.005a
Articulates a broad definition of family Articulates the importance of families Articulates the importance of collaborating with patients and families
2.90 2.53 2.35
1.119 0.964 1.040
3.00 3.00 2.00
4.62 4.14 3.90
0.669 1.082 0.968
5.00 4.50 4.00
.000a .000a .000a
2.94
1.110
3.00
3.80
0.951
4.00
.020a
3.47
0.874
3.00
4.05
0.887
4.00
.085
3.72
1.018
3.00
4.30
0.733
4.00
.082
3.00
1.016
3.00
3.35
0.902
3.00
.460
2.72
0.752
3.00
3.00
0.649
3.00
.264
2.76
0.903
3.00
3.85
0.933
4.00
.002a
2.73
0.961
3.00
3.06
0.416
3.00
.290
2.88
0.967
3.00
3.17
0.618
3.00
.273
2.80
0.941
3.00
3.22
0.732
3.00
.166
3.00
0.594
3.00
3.14
0.478
3.00
.530
3.07
0.594
3.00
3.25
0.967
3.00
.755
2.75
1.183
2.50
4.50
0.761
5.00
.000a
3.44
.814
3.50
4.26
0.733
4.00
.008a
Patterns of care Q44 Families are not visitors; they are always welcome to be with the patient Q45 Families can remain with the patient during nurse change of shift Q46 Families can remain with the patient during rounds Q52 Patients and families are viewed as integral members of the team Q58 Families have the opportunity to participate in interdisciplinary meetings Q59 Systems in place to encourage communication Q63 Staff ask patients and families about their observations, goals, and priorities Q64 Staff acknowledge the individuality, culture, and capacity of each family Q69 Families are encouraged to participate in discharge planning Information for patients and families Q71 Open and honest communication among patients, families, and staff Q73 Practices encourage patient and family involvement in decision making Patient and family support Q90 Staff practices and policies reflect a broad definition of family Q91 Staff ask patients to identify support people who will participate in care. a
Statistically significant findings at .05 level.
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the family presence policy existed and were exempt from answering any additional questions. We disqualified 14 additional respondents because of failed branching logic, allowing respondents to move forward even though they answered they were unaware the policy existed. Of the remaining 337 respondents, 217 (64.3%) felt the policy was fairly consistently to consistently followed (mean score of 2.07 on a 1- to 3-point scale, [1] consistently, [2] fairly consistently, [3] inconsistently followed). Greater than 90.8% of the 307 respondents aware of the policy also had knowledge of all components in the policy; 98% were aware the policy addressed support persons, 94.8% were aware the policy addressed overnight support, and 90.8% were aware the policy addressed the presence of children. Seventy percent of these staff (70.1%) adopted 24/7 presence of support persons and follow this policy consistently, whereas 71.1% adopted the presence of overnight guest and follow this policy consistently. Conversely, 48.9% of the respondents report adopting the presence of children consistently. The majority of respondents indicated 11 items as presenting challenges to policy adherence. However, when asked to identify the top 3 barriers to adherence, 59.3% (168/283) reported inadequate space or environment as the no. 1 barrier followed by challenging families ranked at 53.9% (150/283). The 3rd ranked barrier at 27.9% (79/283) was expectation setting with families. Falling below 20% in ranked order were the last 8 identified barriers to policy adherence: 4th, infection control; 5th, workflow changes; 6th, workload; 7th, unavailable families; 8th, patient security concerns; 9th, unit culture; 10th, abstract policy; and 11th, other disciplines verbally contradicting written policy. Lastly, 87.0% of survey respondents (221/254) aware of the policy indicated support for the family presence policy.
Impact on Formal Complaints We received a minimal number of formal complaints preinnovation and postinnovation in the identified categories. Complaints during the months of September through December yielded 13 formal complaints in 2012 and 63 in 2013. After further review of complaint descriptions, 10 were eliminated because of duplicative entries or policies broader than the family presence scope, for example, a family member denied visitation for a patient in police custody, modifying the number of formal complaints to 10 preinnovation and 56 postinnovation. Complaint data were statistically significant (P = .001) for an increase in complaints postinnovation. In 2012, failure to notify the patient’s family after transfer accounted for 12.5% of formal complaints, compared with 26.2% in 2013.
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Impact on Consumer Perception HCAHPS Scores HCAHPS results demonstrated positive trends toward the desired direction in both questions postinnovation (Figures 1 and 2). The # 2 nonparametric test found no statistically significant differences in top-box scores when compared preintervention and postinnovation or in the total 4-month period preintervention and postintervention.
Discussion There are many insights institutions can gain from this study. Approximately 24.4% of surveyed staff were unaware the new policy existed, indicating a need for additional unit-level education. Of frontline staff aware of the policy, responses provided insight into daily challenges. Whereas 87.0% of staff were supportive of the policy and 70.1% reported full and consistent adoption, staff face a number of daily challenges impacting policy adherence. Two barriers stood out as significant requiring additional support and resources: inadequate space and environment and challenging families. Little flexibility exists regarding space design; however, staff perceptions of challenging families are concerning. It is unclear whether these perceptions are from discerning staff or challenges fueled by inattentive or lack of expectation setting by hospital staff early in the acute phase of care. Although expected findings, the rankings of these findings differed from local staff focus group concerns identified when vetting the new policy and differed from literature indicating restrictions are defended because of infection control (ranked 4th by our staff) and safety and security measures (ranked 8th by our staff).2,3 General comments left by staff at the end of the survey indicate confusion between operationalizing PFCC and family presence, often misusing terms interchangeably. In reviewing comments, staff loosely interpret family presence as providing families ‘‘free
Figure 1. Percentage of top-box results for question 2, ‘‘Nurses listen carefully to you,’’ preintervention and postintervention.
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Figure 2. Percentage of top-box results for question 23, ‘‘Hospital staff took family preferences into account regarding health care decisions,’’ preintervention and postintervention.
range’’ of the organization and feel a lack of empowerment to set expectations in fear of violating the PFCC concept. The lack of boundary setting demonstrates a knowledge deficit regarding the definition of PFCC and likely impacts the increased perception of challenging or imposing families. In addition, general comments expressed concerns regarding appropriateness of children’s presence because of psychological and infection control concerns despite no evidence supporting increased risks for children or patients.12,13 Opportunity exists for executive leaders to reinforce the organization’s mission and vision, role model behaviors, and provide realistic solutions to daily challenges faced by frontline staff. Patient’s testimonials are powerful prompts for influencing change; integrating these stories and listening to patients through established advisory boards or meetings populated with patient advisors provide transformational dialogue regarding the care experience and may provide examples of these realistic solutions. Leaders should encourage staff to customize workflows based on unique patient/family emotion and clinical needs, reducing patient/family demands, thereby positively influencing staff’s perception and execution of care.14 Resources for working with challenging families, embraced by leaders, can also be made available for staff. Customizing care to meet unique needs requires the commitment and support of every team member, department, and leader.14 Lastly, leaders should be sensitive to number of competing priorities across the organization that take away from more elusive PFCC goals toward a cultural shift. The interprofessional team of health system PFCC leaders significantly shifted their perception of PFCC transformation postinnovation, specifically in leadership, mission, and patient and family support. This validates the work of a unified leadership team who
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casted the vision for PFCC adoption. Strength in the 2 categories of leadership sand mission was critical for transforming organizational culture and in both implementation and 6-month intervention sustainability. While leaders’ perception significantly improved in questions supporting family presence infrastructure, the median perception scores did not shift in questions pertaining to translation of PFCC principles to clinical practice. Of the 18 identified questions, only 4 PFCC principles translation to bedside questions were significant, alluding to barriers faced by frontline staff. Despite a supportive infrastructure to welcome and identify (a broad definition of) family and provide systems to encourage communication, nonsignificant assessment results indicate family presence does not equate to patient and family participation in care. This was an expected finding likely related to the newness of the intervention and supportive communication systems. Improvements in participation are probable with subsequent phases of PFCC adoption, that is, adoption of additional evidencebased PFCC practices such as bedside shift report and PFCC physician rounding.14 Continued efforts to translate executive leadership’s vision to frontline staff are imperative in shifting focus to providing families the option to participate in their loved one’s care. While numbers are low, formal complaint data increased after intervention. Complaint descriptions provided important insight into organizational trends such as notifying families at time of patient transfer. Despite recent adoption of systems facilitating communication (eg, electronic health record, bedside computers, and daily plan of care whiteboards), we found evidence in the self-assessment inventory indicating failure to invite patients and families to participate in care. Patients and families expect these tools to provide information, and failing to incorporate tools for information sharing potentially contributed to inadequate communication perceptions. Communicating and encouraging participation in care delivery require workflow modifications. According to the staff survey, only 20% of staff indicated workflow changes as a barrier, indicating many staff may have maintained existing workflows. Lastly, the recent adoption of a system-wide electronic health record likely contributed to increased communication-related complaints. Limitations Validity and reliability testing do not exist for the Hospital Self-assessment Inventory. Formal complaints received were minimal and may not be representative of patients’ and families’ perceptions. Lastly, many factors affect HCAHPS scores, and a causal relationship cannot be linked to any single intervention.
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Conclusion Family presence decreases family anxiety, thereby improving the perception of care delivery and overall patient satisfaction.1-4,7,14,15 Removing visitation restrictions and encouraging family presence are an important 1st step toward PFCC transformation. This QI project provided insight into staff challenges and organizational adoption of PFCC by focusing on family presence impact on leaders’ perception and staff adherence to policy. Findings suggested statistically significant
improvements toward organizational transformation postintervention. Although small, improvements in HCAHPS scores support efforts to include families as extensions of the care team, improving both patient perception of care delivery and patient safety. This organization’s experience can be applied to others furthering their journey to become more patient and family centered. Continued efforts to implement evidencebased PFCC best practice tactics and conduct incremental measurements of success are necessary next steps for achieving recognition as a leading PFCC organization.
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9. Fitzpatrick E, Hinkle JL, Oskrochi GR. Identifying the perception of needs of family members visiting and nurses working in the intensive care unit. J Neurosci Nurs. 2009;41(2): 85-92. 10. The Institute for Patient and Family Centered Care. Strategies for Leadership: Patient and Family Centered Care, A Hospital Self-assessment Inventory. Published January 2004. http:// www.aha.org/advocacy-issues/quality/strategies-patient centered.shtml. Accessed February 15, 2013. 11. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)Va metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2): 377-381. 12. Hanley JB, Piazza J. A visit to the intensive care unit: a familycentered culture change to facilitate pediatric visitation in an adult intensive care unit. J Crit Care Nurs Q. 2012;35(1):113-122. 13. Kean S. Children and young people’s strategies to access information during a family member’s critical illness. J Clin Nurs. 2010;19(1):266-274. 14. Taylor J, Rutherford P. The pursuit of genuine partnerships with patients and family members: the challenge and opportunity for executive leaders. Front Health Serv Manage. 2010; 26(4):3-14. 15. The Joint Commission. R3 Report. Requirement, Rationale, Reference: A Complimentary Publication of The Joint Commission. Oakbrook Terrace, IL: Department of Publication and Education. Published February 9, 2011.
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