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Project Coordinator’s Perspective*: The Critical Care Family Assistance Program FREE TO VIEW

Jean Skelskey, RN; Donna Robillard, MSW; Robin Irwin, MSW
Author and Funding Information

*From the Evanston Northwestern Healthcare (Ms. Skelskey), Evanston, IL; Oklahoma City Veterans Affairs Medical Center (Ms. Robillard), Oklahoma City, OK; and Ben Taub General Hospital (Ms. Irwin), Houston, TX.

Correspondence to: Jean Skelskey, RN, Evanston Northwestern Healthcare, Evanston, IL; e-mail: JSkelskey@enh.org

Chest. 2005;128(3_suppl):111S-117S. doi:10.1378/chest.128.3_suppl.111S
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A review of the formation and development of the Critical Care Family Assistance Program (CCFAP) traces its origins to a series of goals and objectives that are based on findings from several decades of research about family satisfaction. These goals and objectives that were developed by The CHEST Foundation culminate in a mandate “to respond to the unmet needs of families of critically ill patients in hospital ICUs through the provision of educational and family support resources” (The CHEST Foundation; unpublished data; 2002).

In 2002, the task of the two pilot hospitals, Evanston Northwestern Healthcare, Evanston, IL, and the Oklahoma City Veterans Affairs Medical Center, Oklahoma City, OK, was to transform these goals and objectives into reality. In 2003, the program was expanded at Evanston Northwestern Hospital to include a second hospital in Highland Park, IL, and Ben Taub General Hospital in Houston, TX, received funding to replicate the CCFAP. While each of these hospitals has approached this task uniquely, seeking to fulfill the goals and objectives of the program within the special model of care provided by geographically and institutionally diverse hospitals, there has been a general sharing of information, and each has sought to profit from the insights received from other pilot institutions.

The development and implementation of the CCFAP in each hospital requires critical decisions about issues affecting both policy and personnel. One of the most important of these decisions involves the selection of the project coordinator. An efficient and effective CCFAP requires a well-conceived strategic plan and a committed core project team. A strong and dynamic project coordinator is necessary both for bringing together the individuals who constitute the core project team and for assuming leadership in the development and implementation of the strategic plan. This role of project coordinator has complex, multiple responsibilities associated with it. Many of these responsibilities involve interaction with the project director, physicians, and key hospital personnel across many departments. It is essential that the project coordinator be able to function effectively with individuals and groups at varying levels of the organization. For this reason, project coordinators are appropriately chosen from experienced personnel such as critical care nurse managers or social workers with years of experience in significant positions of responsibility.

A project coordinator requires excellent communication skills, the ability to interact with a variety of people, and the capability to solve problems and make decisions. The responsibilities of the project coordinator include the following:

  • Develops action plan and timeline based on input from core project team;

  • Develops budget for the CCFAP in conjunction with the project director;

  • Conducts rounds on all patients and families daily to determine new family needs;

  • Provides information about the ICU environment/procedures to families;

  • Evaluates the communication of program services and identifies problem-solving strategies;

  • Facilitates communication with administration regarding the CCFAP;

  • Helps to foster the education of ICU staff in expanding ideas for the program;

  • Supervises day-to-day implementation of the CCFAP; and

  • Coordinates evaluation of the program.

Specifically, the project coordinator has the responsibility of working very closely with the entire ICU staff: physicians, nurses, therapists, unit secretaries, and others to articulate the vision of how a multispecialty team working together can provide a higher level of care. The project coordinator encourages active involvement and allows everyone to participate in the formation of the CCFAP, utilizing the insights and expertise gained during his or her years of experience. In addition, the achievement of the CCFAP goals depends on seeking and obtaining active support from other departments outside the ICU. The project coordinator has the responsibility of working closely with other divisions of the hospital, assisting them in understanding what the CCFAP is seeking to accomplish, thereby gaining their active support. The success of the CCFAP is based on enlisting support and cooperation from multiple departments on an ongoing basis. With some departments, there exists a history of close cooperation with the ICU, such as pastoral care and social work. With other departments, such as facilities management, food services, and marketing, past involvement has usually been of shorter duration, and more time is necessary in developing these relationships with departments, building trust so they can be active members of the CCFAP team.

Communicating the vision of the CCFAP has been a primary responsibility of the project coordinator. So important is this function that one hospital even organized its CCFAP team before the grant was received. The news that a hospital has been selected to participate in the CCFAP has generally been greeted with excitement, and that excitement has become the vehicle for fostering interdepartmental commitment and cooperation. Many transitory projects emerge at any hospital; therefore, it is necessary to have the CCFAP perceived not only as different, but also as permanent. The pilot hospitals had staff members at every level who had, for some time, observed the sterile treatment accorded the families of ICU patients and felt powerless to deal with this reality. With the CCFAP in place, project coordinators are able to emphasize that the CCFAP not only aids the families, but also has the goal of fostering proactive involvement of the multispecialty team in caring for patients.

Encouraged by support from the hospital administration, project coordinators assume responsibility for bringing together departmental personnel who support the concept of the CCFAP and are critical to its success. These core project team members, under the leadership of the project coordinator, are the primary stakeholders, with responsibility for determining what important steps need to be taken for the well-being of the families of ICU patients. In each CCFAP hospital, the core planning group supports the project coordinator in developing those attitudes and actions that form the basis of the CCFAP model of care. From the beginning, this core group has been the essential component in engendering cooperation and support, and in fostering enthusiasm for the CCFAP, not only within the ICU, but also in those departments with only an indirect relationship to the CCFAP. Leading the core planning team and serving as the CCFAP champion remains the key role of the project coordinator. The positive attitude conveyed by the project coordinator has been instrumental in fostering early adoption of the CCFAP program goals by the core planning team. Simultaneously, project coordinators seek to distance themselves from any authoritarian position. The CCFAP is not to be viewed as the coordinator’s program, but as a key program to which the hospital has made a commitment. The core planning team fosters this feeling of unity as it develops a strategic plan and continues to watch over every aspect of its implementation.

The more the CCFAP opens up the ICU to provide a variety of services to families and involves more staff and departments in its activities, the greater is the need for consistent communication. As the research reflects, for families of patients in the ICU, the fundamental issue has always been one of communication. The project coordinator and the core project team can never stray from a strategy for meeting that need to provide information. From early family surveys administered by the CCFAP teams, it was obvious that families wanted more communication with physicians, nurses, or anyone who could convey useful information. In addition, they wanted access to the patient. These needs were assimilated by the team, and, under the leadership of the project coordinator, plans were developed and implemented to enhance communication.

In the area of communication, the project coordinator serves as a bridge between hospital staff and family members. The project coordinator spends time in the family waiting room each day, becoming familiar with families, their concerns, and their needs. The project coordinator also communicates with staff and listens to observations about what aspects of the CCFAP are working as intended and what areas require additional attention. When communication problems arise, project coordinators are able to respond expediently, alerting the physician, nurse, or other staff member about an issue that needs to be clarified. When concerns deal with systemic issues, the project coordinator meets with the core planning team to fashion an appropriate response and an action plan.

Providing support for improved communication between ICU staff and patients’ families remains a high priority. Similarly, the project coordinator and the core planning team give careful consideration to supporting improved communication within the ICU among physicians, nurses, technicians, unit secretaries, and all staff caring for a patient. When family members strongly indicated that they needed to increase their access to patients, the project coordinator has been able to effect some modifications in procedures to ensure that some visiting restrictions were removed. As a result, family members have more access to patients now than before the CCFAP was initiated. Depending on the patient’s condition, family members may spend more time in the patient’s room than in the waiting room. While some staff members have had to struggle to become accustomed to this, more open access has been largely a positive development. Out of this access has emerged a greater sense of trust. Family members see staff taking care of their loved one; they witness the concern and compassion with which that care is delivered. Family members ask questions, and they participate in decisions being made about their loved one. The overall effect is positive for the family, the patient, and the ICU.

The positive impact of this relaxation of ICU visiting hours is found in evaluation studies that have been conducted at hospitals utilizing the CCFAP program (J. Dowling, PhD; unpublished data; 2004). Further proof of the effectiveness of this change has been cited by Clark,1who presented data showing that 38.9% of patients and families are dissatisfied, to some degree, with the adequacy of visiting hours in the ICU. Building on an earlier commentary by Berwick and Kotagal,2 Clark showed that there is a direct positive correlation between family satisfaction with the visiting hour policy and the likelihood that the family would recommend the hospital. The author cites a variety of studies, all suggesting that whatever had been the merits of restrictive visiting hours in an ICU, they have long since lost whatever usefulness they might have had. These studies corroborate the findings of the CCFAP evaluation, which have also concluded that anytime a family member is kept from seeing a critically ill loved one, the potential for serious dissatisfaction increases. Part of the conclusion of the article by Clark1 states, “It [the value of greater access by families] may seem obvious, but this is because family presence with the patients amounts to instantaneous communication of how the patient is doing right now. They can see what the staff is doing with their own eyes. Staff can tell the patient and the family what they are doing while they are doing it—which partially explains why the practice also reduces the number of questions that staff receives from families.”

Overall communication is also fostered by the change in environment within the ICU. Results from staff surveys administered at the CCFAP sites before and after CCFAP implementation (J. Dowling, PhD; unpublished data; 2004) have indicated that because the CCFAP site has been able to meet some of the basic family needs, family members are less anxious about their loved one’s condition. Staff members report that families are more relaxed and are better able to understand the communication received from physicians, nurses, and other staff; they are able to bring a better sense of perspective to issues when called on to participate in decision making.

The project coordinator, along with the core project team, develops a strategic plan for staffing that aims at clarifying the role that each position will have in achieving the goals and objectives of the CCFAP. Prior to determining the design of the CCFAP at a given site, the project coordinator works closely with the project director to decide how to structure the role that each person will play in establishing that design. A few staff will have final decision-making authority; others will be actively involved in developing design details; some will be given an opportunity to review plans and provide input; others will be kept continually informed about decisions and progress but will have no direct role in providing information.

While all participants in the CCFAP have important roles within the hospital, it is the project coordinator who has the responsibility of determining roles within the CCFAP. The core planning group is utilized by the project coordinator to communicate both the strategic plan and the role that each individual will play within it. The impact that each role has on the total program is discussed, and the interrelationship of the various roles is explored in depth. When gaps are discovered, the project coordinator uses the core planning group to assist in determining how those gaps are to be filled. Out of these discussions and decisions emerges a sense of accountability in which each individual is aware not only of a particular, individual role, but also of the importance of coordination with others. The project coordinator ensures that the strategic plan for the CCFAP is carried out, that there are no gaps in service to families, and that patients and their families are satisfied with their treatment within the ICU.

By design, the plan provides for the examination of priorities and fosters discussions among staff members to determine how each objective will be achieved and what approaches will be used to forestall potential difficulties. Since critical care is delivered by a multidisciplinary team of specialists, these discussions are aimed at distributing work responsibilities in a way that encourages greater coordination and communication.

Both the benefits and examples of such a process of communication and coordination are abundant within the CCFAP. When gaps in service have been discovered, the causes have been identified and solutions put into place. In one case, the project coordinator discovered that additional hospital representation was needed in the family waiting room during certain hours of the day. The Director of Volunteer Services and the project coordinator reviewed the situation at a core planning meeting, and hospital volunteers were enlisted to staff the room during those hours.

In another instance, it became apparent that a major change in the social services schedule was required. At Ben Taub General Hospital, almost all of the families coming to the ICU waiting room were from the working poor and were unable to be present with their loved ones during the day. The only social worker affiliated with the CCFAP was scheduled to be present only during the day, and important family needs were not being met in the evening. A review by the project coordinator and a discussion with the project director led to the assignment of a social worker to the late afternoon and evening hours. A study was conducted at Ben Taub Hospital within their critical care units (CCUs) [J. Dowling, PhD, et al; unpublished data; 2004] comparing the unit having evening/weekend social work coverage and the unit without such coverage. The unit without coverage had significantly more delays in admissions than the unit with coverage during the same time period. Although not statistically significant, there were also more delays in locating family members in the unit without coverage.

The project coordinator works with staff to encourage collaboration and the sharing of information. At Evanston Northwestern Healthcare, the departments of pastoral care and social work have joined together to present a weekly orientation that is intended for the families of patients in the ICU. This orientation, along with its question-and-answer session, enables families to become more comfortable in the ICU environment and provides an assurance that the staff is interested in their well-being. The collaboration between these two departments is so complete that when a conflict in scheduling prevents one of the departments from being present on a given day, the other department assumes that role and conveys information from that perspective.

Needs Assessment

The CCFAP sets out to create a change in the culture of an ICU; its primary aim is to create a site that is committed to bringing satisfaction to the families of ICU patients. To achieve such a goal, there must be intensive examination of the activities involved and a careful scrutiny of their success. All parameters of the CCFAP program are consistently examined. The evaluation process begins even before the strategic plan is complete. The project coordinator develops a family needs-assessment plan to determine from families their greatest perceived needs. The CHEST Foundation provides assistance to the project coordinator, supplying an evaluation consultant to help with the development and administration of the survey, as well as the analysis and interpretation of the results. Surveys are distributed both to families and to staff, and provide the project coordinator and the core planning group with data about the following issues:

  • Relationship between ICU staff and family members;

  • Resources needed to implement the CCFAP;

  • Techniques and skills needed to improve services provided by the ICU;

  • Techniques and skills needed to improve information provided by ICU; and

  • Competencies needed to improve the treatment of families by the ICU.

Historically, in the needs-assessment process, families list their needs that are primarily tangible. They want a comfortable place to sit and somewhere to sleep; they want an ample supply of coffee and access to inexpensive food. Travel expenses are a burden from which they look for some relief. They want inexpensive parking and a place where they can shower. These expressions of need resemble a summary out of the hierarchy of needs by Maslow3; families must have their own basic needs met before they can concentrate on their responsibilities toward a critically ill family member.

Other needs have emerged in these surveys that are also in accord with previous research. Families do not want to feel isolated and alone. They express a desire to talk to other families who are also experiencing the serious illness of a loved one. They want to be able to see and talk to their family member in the ICU. Primarily, families want regular contact with the nurses and physicians who are taking care of their loved ones. They want updates and information when it is available and not when it is convenient for someone to talk to them. They also seek an opportunity to be able to bring their concerns and grievances to someone who will listen and, if possible, will do something about them.

Needs assessment has been instrumental in shaping the CCFAP to meet the specific needs of families. Services are designed around a thorough analysis of these needs. In response to the assessment, the core planning team, under the direction of the project coordinator, develops services that are designed to meet hospitality needs.

The following are some of the CCFAP components that have been developed in response to the needs assessments supervised by pilot site project coordinators.

Family Waiting Room:

Typically, the ICU/CCU waiting room has been expanded to accommodate more people and to foster a comfortable space by purchasing new furniture. The redesigned waiting rooms are newly painted and have fresh carpeting, more comfortable furniture, more pleasant lighting, and more appropriate window coverings.

Family Consultation Room:

To ensure that there is space for a family to meet privately with physicians or another staff member to discuss matters of critical importance and of great emotional impact, a special space is converted or constructed for use as a family consultation room. This private space signals the respect and dignity that families deserve, particularly when learning news about a loved one’s deteriorating condition.

Shower Room:

In addition to clean restrooms, a special room has been made available as a place for family members to bathe and freshen up.

Comfort Supplies:

The families of patients receive a tote bag displaying the logo of the CCFAP program. While the contents of the tote bag differ from site to site, items frequently include a loose-leaf binder arranged for keeping materials distributed by the health-care team; a basic toiletries kit with washcloth, toothbrush, toothpaste, shampoo, deodorant, emery board, and hand cream; a small spiral notebook for taking notes; a pad of sticky notes printed with the program logo and contact phone numbers for members of the care team; and a pen.

Listening Library:

A collection of music, relaxation tapes, and recorded books is set aside for family members and, if their condition permits, for patients. The ICU staff also provides loans of portable audiotape or CD players.

Impact Evaluation

The project coordinator is the key point of contact for ensuring the integrity of data compilation and conducts a process evaluation on a daily basis. The process evaluation answers questions about how the program is implemented and how the program outcomes are achieved. It focuses on questions such as the following:

  • Is the program being implemented as planned?

  • How is the program achieving its objectives?

  • What activities were conducted?

  • What materials or services did families receive?

  • What did families experience, positively or negatively?

  • How is the project team working?

  • What challenges to implementation exist and how can they be overcome?

An impact evaluation is conducted at the end of each program year. This evaluation asks questions such as the following:

  • What effects did the CCFAP have on patient care?

  • Can the effects be attributed to the program?

  • Did the program participants’ knowledge, attitudes, beliefs, or behaviors change as a result of the program?

  • Did the CCFAP achieve its objectives?

The project coordinator utilizes a variety of information sources to assist in the task of process and impact evaluation. Regularly scheduled meetings of the core planning group provide information on all dimensions of the program; staff members who handle the day-to-day challenges of the CCFAP continuously provide input. By regular visits to the family waiting room, the project coordinator can ascertain the individual concerns of family members and make an almost daily assessment about the effectiveness of program services, allowing the determination and introduction of any necessary modifications. In addition, all family members are invited to fill out an assessment survey, in which the strengths of the CCFAP or gaps in service can be described. These surveys are used both for short-term and long-term evaluation purposes.

As a result of the data collection, the project coordinator can introduce changes in the program with little delay. When stress emerged as a primary source of family discomfort, one hospital instituted massage therapy to provide relaxation and stress reduction for family members. Another project coordinator has introduced pet therapy, in which a specially trained dog is introduced into the family waiting room. Playing with the dog lowers the stress level and provides some moments of pleasant relaxation. As communication remained an area of concern, project coordinators sought and obtained resources to provide family members with beepers and pagers so that families can feel free to leave the waiting room for a meal, for sleep, or for general relaxation.

Outcome Evaluation

An outcome (ie, long-term) evaluation is conducted at sites where the CCFAP program has reached a stage of maturity. Evaluations focus on patient outcomes, patient/family satisfaction, change in care, team-family relationship, or systems change. This evaluation poses the following questions, which are generally related to the overall program goals:

  • What change in family satisfaction occurred because of the CCFAP?

  • What is the current length of stay in the ICU as opposed to length of stay prior to the CCFAP?

  • Has there been a decrease in return visits stemming from the same complaint?

  • What change has occurred in the ICU staff perception of the relationship with families as opposed to the prior relationship with families before the CCFAP?

The project coordinator is responsible for gathering much of the data that are used in this evaluation. The CHEST Foundation evaluation team conducts the data analysis, and the findings are reported to the project director, the project coordinator, and the core planning team.

Over the past 3 years, six hospitals have been selected to participate in the CCFAP. These hospitals represent a wide range of model types, as follows: community teaching hospital (Evanston Northwestern Healthcare, two sites); governmental institution for veterans of US military service and statewide service center (Oklahoma City Veterans Affairs Medical Center); inner-city hospital (Ben Taub General Hospital); academic medical center (University of South Alabama Medical Center); and rural/small community hospital (Pardee Hospital of Hendersonville, NC). The geographic, institutional, and patient diversity of these hospitals provides multiple opportunities not only for research and evaluation of the effectiveness of the CCFAP within different models, but also an occasion for presenting the CCFAP over a wide area of the country to medical communities with different interests and needs.

The first task of the project coordinator is to make certain that all divisions of the host hospital are thoroughly familiar with the goals and objectives of the CCFAP. The cooperation of all divisions is essential if the program is to be successful. This information is communicated in meetings, newsletters, and one-on-one meetings with division leaders. Within any hospital, there are many conflicting priorities vying for resources, and the CCFAP project coordinator needs to continually reinforce the importance of the program in enhancing patient care. Each of the CCFAP sites has developed branding slogans, which express a commitment to the concept of serving families. These slogans are prominently displayed in the waiting room and around the entrance to the ICU. To foster the concept of being family-friendly, the CCFAP logo is displayed on whatever the site produces, be it folders, brochures, or tote bags.

The project director and the project coordinator also take the lead in bringing public attention to the CCFAP. Frequently, the public relations department of the hospital will also assist in this endeavor. Typically, news releases are prepared and distributed to local media outlets. The project director and the project coordinator make themselves available to newspapers, TV stations, and radio for interviews. Presentations are also made to local medical groups, service organizations, and other community groups. As the program becomes more recognized in a community, the project coordinator responds to questions from staff members of other hospitals who are seeking information and provides them with printed material about the program.

The project coordinator, in representing the hospital at regional and national conventions, looks for opportunities to make presentations about the CCFAP and encourages other staff members to take advantage of similar opportunities. Presentations have been made at CHEST 2003 and CHEST 2004, the annual meetings of the American College of Chest Physicians. Workshops have been conducted at the 2005 National Teaching Institute and Critical Care Exposition of the American Association of Critical-Care Nurses and the 2005 Society for Social Work Leadership in Health Care Annual Conference. Project coordinators played a significant role in the development of the CCFAP Replication Toolkit, which describes all phases of the CCFAP (information can be found at www.chestfoundation.org). This toolkit is available to hospitals interested in replicating all or part of the CCFAP through the CHEST Foundation.

Under the direction of the project coordinators and staff, the CCFAP has been able to make demonstrable gains in reaching its stated goals (The CHEST Foundation; unpublished data; 2004).

  1. The team-building activities of the project coordinator under the guidance of the project director have led directly to the preparation of a multidisciplinary team prepared to meet the needs of the families of critical care patients.

  2. The entire focus of the structure of the CCFAP is on increasing family satisfaction with the care and treatment of critically ill family members while in an ICU.

  3. The staff of the ICU has become attuned to families’ needs and has established priorities to communicate with families and to improve their comprehension of and satisfaction with the information provided by caregivers.

  4. Coordination between the staff of the ICU and the staff of other hospital divisions has resulted in a collaboration on identifying common formats for providing information and financial resources across various models of care.

  5. The ICUs conducted a preliminary needs assessment and are committed to making evaluation a permanent feature of the CCFAP, which has resulted in improvement of the hospital’s ability to respond to family needs within a structured feedback model.

  6. The active involvement of physicians, nurses, therapists, and all who serve the ICU has contributed overall to increase the medical team’s knowledge and understanding of the CCFAP model and its purpose.

  7. Activities by CCFAP team members and the public relations departments of each participating hospital have increased the knowledge about the CCFAP and have fostered the dissemination of information to both the medical and lay communities.

  8. The CCFAP is committed to further clinical research concerning its current model and seeks to compare and contrast specific levels of family need across various models of care.

Abbreviations: CCFAP = Critical Care Family Assistance Program; CCU = critical care unit

Clark P. Data supports open ICU visitation policy. Healthleaders News January 13, 2005.
Berwick, D, Kotagal, M Restricting visiting hours in ICUs: time to change.JAMA2004;292,736-737. [CrossRef]
Maslow, A A theory of human motivation.Psych Rev1950;50,370-396




Clark P. Data supports open ICU visitation policy. Healthleaders News January 13, 2005.
Berwick, D, Kotagal, M Restricting visiting hours in ICUs: time to change.JAMA2004;292,736-737. [CrossRef]
Maslow, A A theory of human motivation.Psych Rev1950;50,370-396
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