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Support Groups Facilitated by Families of Former Patients: Creating Family-Inclusive Critical Care Units

2009; American Association of Critical-Care Nurses; Volume: 29; Issue: 3 Linguagem: Inglês

10.4037/ccn2009265

1940-8250

Tara L. Sacco, Michael F. Stapleton, Gail L. Ingersoll,

Grief, Bereavement, and Mental Health

Improve communication with families of current patients.One of the most commonly mentioned needs of families of critically ill patients is the families’ desire to have questions answered honestly; to receive regular updates; and to connect with nurses, physicians, and other members of the health care team.1–5 Unfortunately, these needs are not always met, and patients’ families experience unnecessary stress and dissatisfaction with services provided.6 Nurses in the burn trauma intensive care unit (BTICU) of Strong Memorial Hospital, University of Rochester Medical Center, Rochester, New York, determined that a support group for patients’ families might be a way to ensure that the needs of the families were met. This program has been evaluated favorably by patients’ family members and has resulted in several improvements in the ways in which care is structured, managed, and communicated to others. We describe the program and the methods used to evaluate its impact.Studies of the impact of family support groups on care delivery outcomes are notably lacking. The closest approach described in any detail is the use of end-of-life care conferences in which palliative care teams meet with families of dying patients. In these studies, the families’ satisfaction with the conferences was high,7 although opportunities were missed for listening and responding to the families’ concerns and for acknowledging and addressing the families’ emotional needs.8 The conferences also reduced the use of nonbeneficial life support interventions9–11 and resulted in shorter ICU stays for patients who ultimately died in the ICU.10–12Despite limited evidence on the benefits of family support sessions, expert consensus groups are recommending specific strategies for including patients’ families in decision-making processes and for informing the families of care delivery plans.13 This approach, which is defined by Henneman and Cardin14 as family-inclusive care, is a care delivery framework that recognizes the needs of patients’ family members and the roles the families play in the patients’ illness and recovery. The approach also may be viewed as a philosophical one15 that moves patient-focused care to the next step and widens the circle of concern to those who are important in a patient’s life.14(p13) According to Halm et al,15 family-inclusive care consists of 6 elements (Table 1), and although most critical care nurses support these ideals, the ideals are not always implemented in practice.16Most of the research undertaken to support the needs of families of hospitalized patients has been done in neonatal ICUs. These initiatives have included 1-on-1 and telephone contact between family members of current and former patients in the unit17,18 and the offering of family support groups.3 With family support groups, patients’ families were encouraged to discuss their feelings about the patients’ hospitalization. In the 1-on-1 support process, family members of former or long-term neonatal ICU patients met individually with family members of current and new patients to provide information and share experiences. Often these discussions occurred at the patients’ bedside, where family support persons could explain equipment and ways to interact with the infant despite the equipment. The telephone support process consisted of 24-hour telephone availability of a family member of a former or long-term patient who responded to calls initiated by family members of new or current patients in the neonatal ICU. Also described in the literature are the creation of physical environments that promote sleeping in, reading materials, a television room for patients’ siblings, and Internet access.19 A few investigations focused on the families of patients with schizophrenia,20 and one study3 included families of surgical ICU patients, although the results were published in 1994 and the study lasted only 6 months.The impetus for the development of the BTICU family-facilitated support groups was the findings on surveys of patients and patients’ families about satisfaction with ICU care, which suggested that communication with patients’ family members was not as effective as other dimensions of care delivery. Although satisfaction scores for responsiveness to family needs and inclusion of family in decisions about care were greater than the 4.0 minimum desired mean score (respectively, 4.28 and 4.05 of a maximum 5.0), comments from patients and patients’ families suggested additional attention to family needs was desired. Written comments mentioned the need for increased communication from care providers and delays in receiving information about the patient’s care delivery plan. During discussions about the satisfaction findings, staff nurses also reported hearing concerns about how a patient’s family would manage once the patient was discharged from the BTICU.During the discussion, nursing staff identified a number of factors that contribute to the need for communicating more effectively with patients’ families and for providing the support the families need. Because the BTICU serves as a regional referral center for major burn and trauma cases, many families travel long distances and have few to no support persons with them. This situation is particularly true when patients stay for prolonged periods in the BTICU and family members’ life demands necessitate that the family members return to usual functions.A member of the nursing staff who was planning on advancing through the hospital’s clinical ladder system chose to address this communication issue as part of the clinically focused project required of nurses advancing to senior levels. She reviewed the literature for descriptions of other programs that could be applied to the BTICU setting and looked for benchmark organizations for comparison. She found no reports that focused on the families of critically ill adults; consequently, using concepts described in articles on family-focused care and findings in the literature, she and members of an interdisciplinary team created their own plan. The plan included offering family support group sessions, extending the hours available for family visitation, and encouraging family involvement in care delivery rounds. Since then, the American College of Critical Care Medicine (ACCM) has published guidelines13 for creating patient-centered environments that support the BTICU multidimensional approach.Because of the lack of any existing models, staff members contacted several family members of former patients who remained connected with the unit and asked the family members for advice about how to structure the support groups. Discussions with the family members led to a decision to avoid focusing on any specific topic, which had been one consideration, and to leave the sessions unstructured, with the opportunity to request involvement by family members with special needs (eg, after severe brain injury or spinal cord injury) as indicated. A decision was made to invite interested family members of former patients to colead these sessions. This decision was based on the realization that nursing staff could never fully appreciate the impact of responding to and adjusting to the changes brought about by a patient’s event. This process promotes the development of genuine partnerships among the ICU team, patients, and the patients’ loved ones, as recommended by the ACCM.13(p606)Two families agreed to cofacilitate the sessions with an experienced staff nurse or nurse manager. The families alternated in participating and worked with nursing staff to determine a time that would be most useful for families of patients currently in the BTICU. Initial sessions were scheduled at 7 pm on the fourth Tuesday of every month and were held in the unit’s large conference room. After 6 months, this setup was evaluated for responsiveness to families’ needs. A second session was added at 3 pm on alternate weeks on the second Thursday of every month. This time was selected as a result of the staff ’s desire to meet the needs of patients’ families who were present during the daytime. This time frame did not work well for family members, however, and was subsequently changed to alternate weeks at 7 pm Tuesday evenings.Information about the support group sessions was posted in laminated signs at the nurses’ station and in the waiting room for patients’ families. The unit’s family brochure, family spokesperson agreement, and visitation policy also were revised to include information about the purpose, time, and location of sessions. Additional information about the sessions was shared by the nurse manager during daily rounds and by the unit’s social worker, staff nurses, and chaplain.Health care participants in the support group sessions include the nurse manager and/or nurse leader, the family facilitator, a staff nurse, a social worker, and the chaplain. The inclusion of members of many professions supports ACCM recommendations for family-supported care13 and increases the likelihood that the range of family needs will be met. The meetings are open to all staff members caring for patients of families who attend the session. In addition, new staff nurses participate in at least one session as part of their orientation to the unit. The number of family members of current BTICU patients who attend the sessions ranges from 1 to 10 or more, depending on a family’s needs and the size of the family.The nurse manager or nurse leader initiates the discussion by introducing himself or herself and by asking other team and family members to introduce themselves. The staff facilitator stresses the importance of respecting the confidentiality of information shared and opens the discussion by saying, “Nobody ever plans to be admitted to this unit and regardless of how good the outcome is for patients admitted here, you and your loved one’s lives are forever changed. We hope that through these sessions, we can better help you and your loved one understand what is happening and prepare for the next few days or weeks ahead.” The staff facilitator also mentions that the focus of the session is on sharing experiences and providing information to assist with the BTICU experience and with transition from the unit. The facilitator offers to meet with patients’ families outside the session to discuss complaints, issues, or concerns specific to a particular patient.The family support facilitator then begins the active discussion by describing his or her experience as a family member of a critically ill patient in the BTICU. The facilitators talk about the things that were upsetting and what things helped. They share information they learned during the transfer from the ICU and from the hospital to rehabilitation or home care. They discuss how they coped with the long-term care-giver demands once their loved ones were discharged home and recommend resources within the hospital and community to assist with the transition process.Once these experiences are shared, the conversation begins to flow, with families of current patients asking specific questions or talking about their concerns and fears in general. At this point, the focus of the discussion is guided by these family members’ expressed needs. The group as a whole is respectful of those requesting and providing information, and the exchange among participants is helpful, informative, and open. Most of the conversation is facilitated by the family support leader; nursing staff and other members of the health care team respond to specific questions they are most qualified to address.The impact of the family-facilitated support group was evaluated by using process and outcome measurement approaches. The process used to design and implement the support group was documented in meeting minutes and through program planner reports. Information obtained through these sources and during staff discussions resulted in refinements of the plan and changes in meeting time and frequency.Process data were collected through evaluations of individual sessions. After each session, participants completed a survey developed by BTICU nursing staff that covers facilitators’ respectfulness of feelings and opinions, level of comfort during the process, facilitators’ knowledge, timing of sessions, helpfulness of the session, effect on family members’ ability to cope, and whether the participant would attend a session in the future. Response options range from 1 (disagree) to 5 (agree); the range of responses has consistently been 3 to 5. Overall mean scores for ratings range from 4.16 to 4.95. Highest ratings are for respect, comfort, and facilitators’ knowledge; lowest scores are for timing of sessions (Table 2).Both qualitative and quantitative data have been used to determine the impact of the program on care delivery outcomes. Outcome measures include the perceptions of patients and their families of responsiveness to the needs and inclusion of the families in decisions about care. This information is collected via a survey administered during interviews conducted before or immediately after a patient’s discharge from the BTICU.The survey used for the evaluation of families’ perceptions of family inclusiveness was designed as part of the hospital’s multiunit adult ICU transformation program, which was funded by the Department of Health and Human Services. A Likert-type response format is used, with response options ranging from 1 (poor) to 5 (excellent); questions focus on nursing care, medical care, ancillary services, and facilities. The overall α coefficients for the tool are 0.94 and 0.98 for nursing quality, indicating excellent internal consistency reliability for the survey. A comparison of satisfaction items pertaining to the inclusion of patients’ families in decision making and the responsiveness of nurses to families’ needs indicates an improvement in the mean score for the inclusion of patients’ families and a decline in the responsiveness to families’ needs, although neither of these differences is statistically significant (see Figure).The reason for the decline in mean responsiveness to families’ needs is unknown. The change may be related to an increase in turnover in experienced staff and a complete change in leadership during the period studied. The nurse manager assumed a position outside the hospital, and the nurse leader, who was the principal facilitator of the family support groups, carried full patient assignments during the period, resulting in her inability to move about the unit recruiting patients’ families and overseeing meetings. Consequently, the sessions for 1 month were canceled, and the focus of the unit shifted to meeting the needs of newly hired staff. Moreover, the mean scores for each of these satisfaction items should be interpreted with caution; the number of respondents for each item ranges from 14 to 32, and the item scores are consistently within the favorable range (>4.0, with targets for improvement set for >4.5). As a result, increments of improvement (or decline) are small.Much of the useful information on the impact of the program is collected through qualitative data; written comments, verbal reports, and observations of interactions during and after the support groups provide additional information about program effect. The findings are summarized according to their effect on patients, patients’ families, and staff.Patients benefit from their families’ knowledge of what to expect during and after transfer from the BTICU. Working with nursing and other health care providers, patients’ families are more able to anticipate needs and to plan for how to facilitate transition from the ICU to the general inpatient unit, rehabilitation unit, or home. In addition, when family members are rested, they may be better able to meet the needs of their loved ones.Patients also benefit from the staff ’s increased understanding of the patients’ life histories and backgrounds, which often are discussed during the family support group sessions. In one instance, staff learned that the patient was a decorated war hero and were able to acknowledge this important aspect of his life when interacting with him. In another instance, a patient’s family members disclosed that he had a history of mental illness that had not been mentioned previously and voiced their concern that his current condition might somehow be related.The availability of family support sessions may promote improved coping and functioning among patients’ families20; family members who participate in the sessions benefit from problem-solving and post-ICU planning discussions. Family participants in our support groups comment on finally “hearing the message about the work that needs to be done” and “taking care of myself so I can better take care of my family member after discharge.” Family members also describe going home to sleep for the first time and feeling more comfortable about leaving the bedside. Many reported having a better appreciation of small rehabilitation gains after one of the family facilitators shared how the facilitator’s family celebrated its loved one’s relearning how to tie her shoes. These disclosures may be particularly helpful for family members who manage the discharge of a patient who has altered levels of consciousness and functioning.21,22During the family support sessions, family dynamics and support relationships also are evident. In several instances, nursing staff and other members of the health care team observed who were the supports for a patient’s spouse or parent and how the patient’s family was managing the stress of the hospitalization as a whole. In one instance, the staff were providing most of the information about a patient’s condition to the patient’s biological brother. During the course of the family support sessions, information was shared that the brother-in-law was the person closest to the patient and the person who was serving as the primary communicator to other members of the patient’s family. The staff were subsequently able to ensure that the brother-in-law was informed of changes in the patient’s condition and plan of care.Staff develop a better understanding of the needs of both patients and patients’ families and achieve what Radwin23 and others24,25 describe as “knowing your patient” (in our program, knowing patients and patients’ families). This knowing has important implications for care delivery outcomes; the extent of knowing may contribute to the level of individualized care and the choice of how care is delivered.24,25 Without a full picture of a patient and the patient’s family, health care interventions may be insufficient or inappropriate for the best outcome. Moreover, because they tend to focus on the completion of tasks,26 new staff members may miss the importance of attending to the needs of a patient’s family and of responding to the more subtle dimensions of quality care. Exposure to the expressed needs and concerns of patients’ family members during support group sessions helps bring the importance of this care delivery aspect to the forefront.Our experience suggests that new staff also benefit from the opportunity to hear about the needs and concerns of patients’ families in a less threatening environment away from the bedside. New staff members learn group facilitation techniques and hear about situations and concerns of a patient’s family that may be new to these staff members. Because new staff members have not had multiple interactions with a variety of patients with complex needs, the range of experience of the new staff is much more limited than that of more experienced staff, and the new staff are less likely to have been exposed to the wide range of reactions likely in ICU settings. New staff also have an opportunity to hear about the concerns of a patient’s family without the demands of the patient’s immediate task-related needs overpowering the staff members’ ability to listen.In addition, new staff often struggle with how to respond to the multiple demands of critically ill patients while also attending to the concerns of the patients’ families. As a result, the families may feel excluded during care delivery. New staff also may feel overwhelmed by their inability to meet everyone’s needs. This inability to communicate effectively with a patient’s family can result in conflict, with the family ultimately reporting dissatisfaction with the ICU experience.27 During the family support sessions, new staff can hear the concerns expressed by patients’ family members and the questions the families ask. Concerns raised during our family support groups have included the following:Having a senior staff member and a family member of a former patient present in the support group helps relieve the pressure on new staff to provide answers or to respond to potentially difficult situations.New and experienced nurses in the BTICU report that they have used the information obtained in the support group sessions to refine a patient’s plan of care, incorporating specific actions designed to address the needs of the patient and the patient’s family. The nurses report that they leave the sessions with a better understanding of the usual communication style of a patient and the patient’s family and of what approaches are most effective for sharing and receiving information. Staff describe the experience as useful for seeing a patient’s and family’s needs holistically and for understanding how better to meet those needs.Few negative effects have occurred with the implementation of this program, although the cost and time impact on staffing and unit budget should be considered a potential adverse outcome, especially if the costs are not offset by a favorable effect. The need to plan for the family support sessions and to allow nursing staff and others to attend has implications for scheduling and staffing during the hour-long meetings. Scheduling and staffing may be particularly difficult when attempts are made to schedule involvement of both senior nursing and new staff in the same support session. Breaches of confidentiality also are a concern if a patient’s family members or staff disclose information shared during the sessions. Reminding participants of the need to refrain from talking about private information is an important step at the start of each session.Several insights have been gained during implementing and overseeing family support groups. When support groups are introduced in critical care areas, the best approach is to begin small and build on successes. This approach is more likely to maximize potential for favorable outcomes and the implementation of a process that meets the needs of the population served.Nurses interested in implementing a family support group are encouraged to include family members of former and current patients in the planning process and to recruit family members of former patients as group facilitators. Ideal family facilitators are those who express an interest in helping others and who have the time to participate on a regular basis. Having more than a single family involved helps keep the time requirements to a reasonable level. In our case, we were approached by family members who had established positive relationships with the nursing staff and were members of the Rochester health care community. Approaching interested family members is best done later in a patient’s recovery, after the family members own needs are addressed and they have identified resources and internal strengths to assist in their adjustment to the changes in their lives. No family member should be pressured to participate or to lead a group. Some family members may be willing to talk 1-on-1 with other families or to be available by telephone. Whatever contribution they are willing to make should be recognized and appreciated for how it contributes to the creation of a family-inclusive environment. Their insights are well beyond what nursing staff and other health care personnel can provide, and their interest in the welfare and needs of families of current patients is tangible and immediately evident to those with whom they interact.The facilitation skill of the staff and family group leaders is important to the overall success of a family support group. Experienced nurses with a commitment to family-inclusive care should take the lead, with nurse managers assisting and promoting the process. Facilitators need to be able to redirect the discussion toward the family’s concerns if family members spend too much time praising or criticizing the staff. Facilitators also need to encourage family members to discuss immediate needs outside the session if discussion and concerns of one family overpower the rest of the group. All families in attendance should be encouraged to participate and should be provided with sufficient time to express their concerns.We always reinforce the desirability of hearing everyone’s thoughts, although we also note that families are welcome to come and listen and not speak if they prefer. They can say as much or as little as they want. We stress the session’s focus on the family’s needs and the care delivery plan for the family’s loved one. We also reinforce the availability of unit leaders to discuss specific concerns or unique situations outside the session. If the discussion is clearly moving beyond the time limits of the session, one of the nurse leaders offers to continue the discussion in a separate location, and family facilitators offer to be available by telephone or in person if needed.The decision to use a more focused approach to group discussions or a more open process, such as the one we implemented, is based on the needs of patients’ families and the types of patients served. In some instances, different sessions may be needed, with specific information provided in some meetings and more family-directed discussions in other meetings. Because of the mix of diagnoses and the resultant issues and needs of participants, general sessions should focus on the experience of patients’ families overall rather than on specific concerns. If specific technical or informational considerations are evident for a family (eg, the family has specific needs because of the type of traumatic injury—brain injury or extensive burn), separate sessions may be useful. Having family facilitators who have similar experiences may help families of current patients identify and disclose unique needs. In addition, individual meetings can be held after the general session for family members who need specific content.The sessions should be used to provide families with both an immediate and a long-range perspective. For some families, a focus on the immediate concerns is all they can handle. In such instances, the families should be encouraged to return to a later session when they are ready to think beyond the ICU period. Some families in the BTICU return to the support sessions after their loved ones are discharged from the unit. This practice is encouraged, and the concerns of these families are treated as equally important as those of families of patients currently undergoing treatment in the BTICU.The selection of days and times of sessions should be based on unit work demands and families’ needs. The BTICU elected to offer the sessions twice monthly, with the intent to sustain the meetings indefinitely. This decision has its downside for family members of patients whose stay in the ICU occurs within the period between sessions.The use of a phone tree can facilitate family support in between scheduled group sessions. In this process, families of former patients who agree to be contacted by family members of current patients provide telephone contact information, which is given to the families of current patients. We attempt to connect family members of current patients with support families whose experiences are somewhat similar (eg, same admission diagnosis or long-term care needs). Before providing any family’s telephone number, we always contact the family and ask if the family members are agreeable to having someone call. This process has been used in a limited fashion in the BTICU and will be expanded in the future. At this time, we have not used e-mail communication, although e-mail is a possibility as well.Involvement of the entire staff is essential to the program’s success. Nurses providing direct care must ensure that patients’ families are aware of the group sessions and be willing to listen to and incorporate interventions responsive to identified concerns. The staff also needs to view this approach as one part of a multidimensional program designed to create a family-inclusive care delivery environment. We promote this process through direct reporting to nursing staff caring for patients, staff meetings, and quality improvement initiatives designed in response to identified needs. Using the information obtained in the support group sessions to improve the care of individuals as a whole maximizes the potential impact of the process. Table 3 summarizes the principal recommendations based on our experience with family- facilitated support groups in the adult ICU.A family-facilitated support group was included in a comprehensive plan to increase inclusion of patients’ families in care of the patients. Our findings suggest that support groups can increase communication about what to expect during and after a patient’s ICU stay and provide a mechanism for patients’ families to discuss the families’ concerns with others who have had similar experiences. Additional research is needed to determine the impact of these sessions on families’ perceptions of care provided and other outcomes such as a patient’s level of depression, anxiety, and perceived readiness for discharge and return to home. Although insufficient by itself to create a culture that values involvement of patients’ families and ensures that the families are an integral component of care delivery, support groups appear to hold promise as one method for providing family-inclusive care.The importance of including patients’ families in decision making and keeping the families informed is stressed in several articles,2,5,7–12 including a recent publication by the ACCM.13 These actions are described as essential in today’s critical care environment, where “ . . . the family remains the [single] most important social context to consider when determining interventions to positively influence patient outcomes.”13(p88)Partial support for the evaluation of this program was provided by grant D66HP03172 from the Department of Health and Human Services, Nurse Education, Practice, and Retention: Enhancing Patient Care Delivery Systems.