Family Experiences During Resuscitation at a Children s Hospital Emergency Department

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1 Original Article Family Experiences During Resuscitation at a Children s Hospital Emergency Department Patricia R. McGahey-Oakland, RN, MSN, PCCNP, CPNP-AC, Holly S. Lieder, RN, MSN, CPNP-AC/PC, Anne Young, RN, EdD, & Larry S. Jefferson, MD Patricia R. McGahey-Oakland is Acute Care Pediatric Nurse Practitioner, Baylor College of Medicine/Texas Children s Hospital, Houston, Tex. Holly S. Lieder is Assistant Clinical Professor, Duke University School of Nursing, and Acute Care Pediatric Nurse Practitioner, Duke Valvano Hospital, Durham, NC. Anne Young is Professor, Texas Woman s University College of Nursing, Houston, Tex. Larry S. Jefferson is Chief, Intensive Care Service, Baylor College of Medicine/Texas Children s Hospital, Houston, Tex. Correspondence: Patricia McGahey-Oakland, 6143 Olympia Dr, Houston, TX 77057; triciaoakland@yahoo.com /$32.00 Copyright 2007 by the National Association of Pediatric Nurse Practitioners. doi: /j.pedhc ABSTRACT Introduction: Family presence (FP) during resuscitation is a timely and controversial topic. Family members are becoming part of the resuscitation process. Study objectives included: (1) describe experiences of family members whose children underwent resuscitation in a children s hospital emergency department; (2) identify critical information about family experiences to improve circumstances for future families; and (3) assess mental and health functioning of family members. Methods: This descriptive, retrospective study involved a 1-hour audio-taped interview of 10 family members using the Parkland Family Presence During Resuscitation/Invasive Procedures Unabridged Family Survey (FS) and investigatordeveloped questions. Mental and health functioning were assessed using the Brief Symptom Inventory, the Short Form Health Survey version 2, and the Post Traumatic Stress Disorder Scale. Seven family members were present during resuscitation, and three were not present. Results: Five thematic categories were identified: (1) It s My Right to Be There; (2) Connection and Comfort Make a Difference; (3) Seeing is Believing; (4) Getting In; and (5) Information Giving. Family members voiced that it was their right to be present, indicating they had a special connection to the child. Seeing or not seeing the events of the resuscitation affected family members ability to believe the outcome. Measures of mental and health functioning were similar to population norms. Discussion: Instituting guidelines that facilitate FP may provide mechanisms to ensure that the needs of patients, family members, and health care providers are met during a stressful event. J Pediatr Health Care. (2007) 21, Family presence (FP) during resuscitation is a timely topic for all health care providers. FP is defined as the attendance of family member(s) in a location that affords visual or physical contact with the patient during resuscitation or an invasive procedure (Emergency Nurses Association [ENA], 2005). Despite inconsistent acceptance and integration in both adult and pediatric institutions, the impetus for incorporating FP continues to grow. In 1982, Foote Hospital formally allowed FP in response to family member s demands (Hanson & Strawser, 1992). In 1994, the ENA developed an education booklet to facilitate implementation of FP, followed by an official statement of FP implementation guidelines in 1995, subsequently revised in 2001 and 2005 (ENA). The American Heart Association (AHA) included recommendations supporting FP options in the Emergency Cardiovascular Care Guidelines2000(AHA,2000;Cummins& Hazinski, 2000), the updated version of Pediatric Advanced Life Journal of Pediatric Health Care July/August

2 Support 2002 (American Academy of Pediatrics [AAP], AHA, 2002), and the American Association of Critical Care Nurses Practice Alert (2004). In September 2003, anational Consensus Conference on FP During Pediatric Cardiopulmonary Resuscitation and Procedures was held, and representatives from 18 national organizations agreed on recommendations for FP (Parkman Henderson & Knapp, 2006). REVIEW OF LITERATURE Family members consistently express a need to be with loved ones during serious crisis (Boie, Moore, Brummett, &Nelson, 1999; Doyle et al., 1987; Jarvis, 1998; Mangurten et al., 2006; Meyers et al., 2000; Meyers, Eichorn, & Guzzetta, 1998). Emergency departments (EDs) across the United States have permitted FP and subsequently conducted surveys of family members, health care providers, and in some instances, the resuscitated patient. Meyers et al. (2000) and Mangurten et al. (2006) found that family members held a positive attitude toward being present during resuscitation or invasive procedures and expressed their need and right to be there. FP helped families realize the seriousness of the illness and believe that all possible options had been exhausted (Doyle et al.; Jarvis; Mangurten et al., 2006; Meyers et al., 2000).Familiesbelievedtheirpresence was beneficial to the person resuscitated, and in the event of death, adjustment was easier (Boie et al.; Doyle et al.; Mangurten et al., 2006; Meyers et al., 2000; Meyers et al., 1998). Family members present during resuscitation consistently indicated they would recommend FP to others and would participate again (Doyle et al.; Meyers et al., 2000). While families evidenced uniform support of FP, health care providers have mixed responses (Belanger&Reed,1997;Helmer,Smith, Dort, Shapiro, &Katan, 2000; Mangurten et al., 2005; McClenathan, Torrington, &Uyehara, 2002; Meyers et al., 2000; Sacchetti, Carraccio, Leva, Harris, &Lichenstein, 2000). Some providers expressed strong support, while others are reluctant. Two surveys of health care providers strongly criticized the option of FP because of lack of rigorous scientific research and did not support the current Emergency Cardiovascular Care recommendations (Helmer Family members present felt reassured that all possible options to help their child were exhausted. et al.; McClenathan et al.). Studies of health care providers found nurses to be more supportive of FP than attending physicians, although attending physicians were significantly more supportive of FP than medical residents (Mangurten et al., 2006; Meyers et al., 2000). Experience with FP was a critical factor in modifying attitudes when health care providers discovered many of their presumptions were unfounded and positive outcomes occurred (Belanger&Reed;Mangurtenetal.,2005; Meyers et al., 2000; Sacchetti et al.). Health care providers expressed concern about interference with the resuscitation. However, surveys of health care providers experiencing FP during resuscitation or invasive procedures indicated FP did not negatively affect clinician performance (Boie et al., 1999; Haimi-Cohen, Amir, &Harel, 1996; Mangurten et al., 2006; Meyers et al., 2000; Meyers et al., 1998; Powers &Rubenstein, 1999; Sacchetti et al., 2000). Rather, parental presence decreased the child s anxiety related to the invasive procedure (Bauchner, Vinci, Bak, Pearson, & Corwin, 1996). Additionally, most health care providers with FP experience indicated that families conducted themselves appropriately during the resuscitation(meyersetal.,2000).inarecent study, patient care was uninterrupted in 100% of resuscitation/invasiveprocedureevents(mangurten et al., 2006). Redley and Hood (1996) and Helmer et al. (2000) asserted that some staff are concerned that families are unprepared for or offended by FP. However, surveys of family members indicated FP reduced the agony of waiting in another area and afforded an opportunity to say goodbye (Meyers et al., 2000). Surveys also discovered that most staff wanted the option to be present at the resuscitation of their own family members (Back & Rooke, 1994; Beckman, et al., 2002; Jarvis, 1998; Maclean et al., 2003; Mangurten et al., 2005; Meyers et al., 2000; Redley & Hood; Sacchetti et al., 2000). A final concern of health care providers is that FP would have adverse psychological effects on families or would increase staff stress. As the invasiveness of procedures increase, health care providers are less comfortable with FP. However, staff stress did not significantlydifferwithfp(boyd& White, 2000). Studies evaluating psychological functioning of families and staff with regard to FP reported no adverse psychological effects among either families or staff involved in the resuscitations (Boyd &White; Robinson, Mackenzie-Ross,CampbellHewson,Egleston, &Prevost, 1998). Additional scientific information is needed to provide an evidence 218 Volume 21 Number 4 Journal of Pediatric Health Care

3 base for FP as policies are developed and implemented, particularly in pediatric populations. Children represent a vulnerable group who are unable to care for themselves. Consequently, parents or other significant family members represent an extension of the pediatric patient that must be considered (McGahey, 2002). This retrospective study describing experiences of family members whose children underwent resuscitation in the ED is a precursor to FP policy implementation. Few studies have exclusively interviewed the family members of pediatric patients, making the information gathered in these interviews a unique contribution to the literature. PURPOSE To facilitate development and implementation of a FP during resuscitation policy, study purposes included the following: (1) Describe experiences of family members whose children underwent resuscitation attempts in a children s hospital ED; (2) recognizing family members as experts, identify critical information about family experiences to improve circumstances for future families; and (3) assess mental and health functioning of family members. METHODS Setting This descriptive, retrospective study examined family experiences with resuscitation in the ED of Texas Children s Hospital (TCH), a large pediatric tertiary hospital located in Houston, Texas. TCH did not have a formal FP policy, and staff or family facilitators are not routinely allocated for families during resuscitation. Inclusion Criteria The study sample consisted of family members of patients identified through a performance improvement activity of the TCH Cardio-Pulmonary Resuscitation (CPR) Committee, including medical record review. Because of the sensitive nature of the interview, the institution required stringent criteria for study inclusion. Participants included English-speaking and Spanish-speaking adult family members of children undergoing resuscitation initiated prior to their arrival at the TCH ED between March 2002 and April 2003 and had a CPR flow sheet submitted to the CPR Committee. Twenty-five charts met the study criteria. Sample Of the 25 patients, investigators interviewed 10 family members. Nine declined to participate, and six were lost to follow-up. The nine who declined to participate indicated a lack of emotional readiness to discuss their resuscitation experience. Family members included seven mothers, two fathers, and one great grandmother. Seven family members were present during resuscitation. One mother was present for two separate resuscitation events. Six participants were Hispanic, two were White, and two were Black. Family member ages ranged from 23 to 63 years (M 35.9; SD 11.9; Median 32.5). Family member education levels ranged from 4.4 years to postgraduate (M 9.9, SD 4.2; Mdn 10). Children s ages ranged from 3 months to 10 years (M 4.4 years; SD 3.9; Median 3.7). Three children had chronic illnesses, while seven experienced acute life-threatening events. All 10 children died after the resuscitation event. Instruments Data collection utilized both quantitative and qualitative instruments. Permissions were obtained for instrument use. Quantitative Instruments. The previously validated and reliable Parkland Family Presence During Resuscitation/Invasive Procedures Unabridged Family Survey (FS) included quantitative and qualitative components (Meyers et al., 2000). The quantitative component is the Family Presence Attitude Scale (FPAS-FM), which consists of 15 items rated on a 4-point Likert scale assessing attitudes, problems, and benefits of FP. To accommodate for family members not present during resuscitation, a parallel FPAS-FM with modified questions to reflect lack of presence was developed. An example of modifications necessary included changing the initial questionnaire stem from Being at the bedside to If you had the opportunity to be at the bedside. To establish content validity, a panel of family members and health care providers reviewed the parallel FPAS-FM. All but one parallel FPAS-FM item received an endorsement by the reviewers of 70% or greater. All items were retained in order to match the Parkland FPAS-FM. Three measures were used to assess psychological and mental health status. The Brief Symptom Inventory(BSI-18)(Derogatis,2001) measures three psychological dimensions including depression, anxiety, and somatization as well as providing a Global Severity Index. The Short Form Health Survey version 2(SF-12v2) (Ware, Kosinski, Turner-Bowker, & Gandek, 2002) is a12-item scale measuring health status across physical and emotional domains to assess mental and physical functioning. The Post Traumatic Stress Disorder (PTSD) (Breslau, Peterson, Kessler, & Schultz, 1999) is a seven-item symptom screen for posttraumatic stress disorder derived from the National Institutes of Mental Health Diagnostic Screening Interview Schedule for Diagnostic and Statistical Manual IV. Reliability, validity, and normed population values for each of these scales have been established previously (Breslau et al.; Derogatis; Ware et al.). Qualitative Instruments. The FS and five investigator-developed procedural questions regarding FP were used to gather information about family member experiences Journal of Pediatric Health Care July/August

4 with resuscitation (Meyers et al., 2000). The FS is a32-item family survey containing 10 demographic items and 22 open-ended questions regarding FP experiences. Study investigators designed a parallel FS for family members who were not present. Open-ended items were reviewed for relevance by a panel of family members and health care providers and received endorsement of 70% or greater with the exception of three items, which were modified for clarity. Procedure Following Institutional Review Board approval, family members of patients meeting study criteria were mailed a letter briefly describing the study. In a follow-up phone call, study purposes were explained. If family members were willing to participate, an interview appointment was set. The time lapse between the child s resuscitation and the interview was between 1 and 2 years. Interview timing reflected the availability of the CPR flow sheets from the previous calendar year at the time of study initiation. Semi-structured interviews were conducted in a private conference room at the institution or at the participant s residence with one participant and investigator(s) present. A translator was present for Spanish interviews. Following signed consent, participants responded to demographic questions, followed by audio- taped responses to the FS. Investigators marked questionnaire responses to the FPAS-FM, BSI-18, SF-12v2, and the PTSD. Six interviews were completed in English and four in Spanish. Family members were afforded the opportunity to provide additional information regarding their experience that was not covered by the interview questions. Interviews lasted approximately 1 hour. The interview concluded by offering a list of community resources and providing parking vouchers. Analysis Demographic data were analyzed using frequencies and percentages with means, medians, standard deviations, and ranges computed for the FPAS-FM, the BSI-18, the SF-12v2, and the PTSD. Scores from the parallel FPAS-FM were combined with the Parkland FPAS-FM for analysis. Software available through Quality-Metric was used to score the SF-12v2 Whether present or not, all family members expressed the importance of the option to be present during resuscitation. identification were resolved by establishing consensus. RESULTS Quantitative Analysis Whether present or not, all family members expressed the importance of the option to be present during resuscitation. Family members had a mean FPAS-FM score of 24.1 (SD 4.9, Mdn 24), with a possible score range of 15 to 60 (Table). For this questionnaire, low scores indicate support for FP. Because of the small sample, mental and health measures were used descriptively (Table 1). Family member s scores ranked at the 66th percentile on the Global Severity Index (GSI) of the BSI. Normed population scores ranked at the 50th percentile, indicating higher stress levels in the sample. SF-12v2 scores on the Physical Component Summary (PCS) and the Mental Component Summary (MCS) were similar to population norms. Mean scores on the PTSD were below the cutoff score of 4, indicating an absence of traumatic stress. (Quality Metric, 2004). Standard qualitative data analysis strategies were used for open-ended interview questions (Mason, 2002; Maxwell, 1996). Verbatim transcriptions were completed for audio- taped interview responses. For interviews completed in Spanish, the translator transcribed the interview verbatim into English. Three investigators independently conducted a line-by-line review of the taped transcriptions. A constant comparison technique whereby each interview transcript was compared to previous interview transcripts was completed (Strauss & Corbin, 1998). Investigators independently identified emerging themes. Following independent review, thematic categories were established through team meetings. Discrepancies in thematic Qualitative Analysis Five themes regarding parent reactions and concerns emerged from the analysis of the interviews regarding family member experiences. These included (a) It s My Right to Be There ; (b) Connection and Comfort Makes a Difference; (c) Seeing is Believing; (d) Getting In; and (e) Information Giving. It s My Right to Be There. All 10 family members indicated that being present with their child was an unequivocal right, an innate and instinctual responsibility. They commented that their presence was critical to their child during every life transition and crisis, with resuscitation being no exception. One mother said, If you are the parent, you have every right to be with your child... nothing should be hidden from you, especially if it s a lifethreatening situation. Emotions surrounding FP were strong. A father of 220 Volume 21 Number 4 Journal of Pediatric Health Care

5 TABLE. Summary for quantitative measures Sample Population norms Measure M Median SD M SD FPAS-FM* BSI Global Severity Index N 10 SF-12v Physical component summary Mental component summary N PTSD N FPAS-FM, Family Presence Attitude Scale Families; BSI, Brief Symptom Inventory (BSI-18); SF-12v2, Short Form Health Survey, Version 2; PTSD, Post Traumatic Stress Disorder. *Possible score range 15-60; lower score indicates support of family presence. Score 4 indicates does not meet criteria for PTSD. a 2½-year-old son indicated, I would be pretty angry if they would have told me I couldn t be with him in his last few minutes or hours or whatever it is. Parents perceived themselves as the central figure in their children s lives, more than other family members. While family members agreed it is acceptable for others to be present, preference should be given to the primary caregivers, followed by other caring family members. Some family members perceived themselves as the link between the event and other family members. One Hispanic participant indicated that death, like childbirth, is a family experience, and being present allowed her to explain what was going on to others. A Hispanic mother of a chronically ill 10-yearold said, We have the right to be there with our loved one who is sick. We have to be able to see what is going on...to see if they get better or not, to be able to explain to the rest of our family. Some participants recognized that not all family members want to be there, but believed family members had the right to choose. A mother of an acutely ill child acknowledged that options to be present during resuscitation are important: I feel that a parent should be able to see that [resuscitation], to be able to have the option... to say yes I want to be there or to say no I can t do it because some people can do it and some people can t. But I feel that you giving them that option is still letting them [parents] know that you [parents] are still in control that you are still their parents. Not only did family members believe it was their right to be there, they also indicated that they would recommend FP to others. However, even though family members firmly believed that presence during resuscitation was their right, most family members indicated that if their presence would be detrimental to their child, it would be appropriate for them to be asked to leave. Connection and Comfort Makes a Difference. Caregiver connection to a child is unique. Family members believed their children wanted them there and believed they provided strength for their child. The mother of a chronically ill 5-year-old present during two separate resuscitations commented on the importance of her presence during the first resuscitation. She recounted the physician s statement to her: It was clearly a miracle that she was able to come back the way she did. They tell me themselves that they felt it was because I was there the whole time. Family members did not want their children to be afraid. The same mother indicated, It was important to me because I wanted my daughter to know that her mommy was right there with her... I knew that it would be that much more reassuring to her that she wasn t alone with all the strangers doing all of these awful things to her.... I wanted to tell her how much I loved her, even though she might not hear me. The instinct to be present also was confirmed by a mother who was unable to be with her 3½month-old child. She said, If you love someone, you want to be there and talk to them when they are going through something terrible. Another aspect of comfort offered to parents by FP was the opportunity to give their child permission to die. A mother of a chronically-ill 10-year-old shared that it was important for her to have a moment to say goodbye. I whispered in his ear that I loved him and that he could go peacefully and that I was right there with him. Not only is presence helpful to the child, but the physical connection also facilitated healing for the family member. Although it was hard to be in the room, one mother believed she was better able to handle herself because she was present. A mother of a 2-year-old who was later declared brain dead derived comfort from being able to talk with her son. She interpreted his tears at the sound of her voice as him telling her not to leave. An- Journal of Pediatric Health Care July/August

6 other mother who was not present commented that it would have been comforting to her to be able to see her son before he was heavily sedated. She believed he might have been more responsive to her by opening his eyes to her voice or being able to hold her hand. Seeing is Believing. Family members present felt reassured that all possible options to help their child were exhausted. Doubts about what might have been done were dispelled. One mother concerned her child might receive less care because of limited financial resources said: It helped me realize that the hospital did whatever they could for him, and I feel if I wasn t there I would have gone home thinking, What else could they have done for my son? What did they not do for him? and because we were there I seen (sic) how hard the nurses and doctors and everybody tried... they did everything. Family members not present wondered if the outcome would have been different. A mother of an acutely injured child indicated,...it would have been helpful [being present during resuscitation], because I would ve been able to see him from the beginning on through. Yes, I would have had the satisfaction of knowing that everything that could have possibly been done was done. Family members present during their child s resuscitation consistently commented that being there provided closure. One mother remarked,... I never would have known whether the doctors did everything they could... I never would have had closure if I wouldn t have experienced this. The mother of a chronically ill child shared the events following her daughter s death when she was permitted to remain in the room.... They did not rush us out of there or rush her out of there. They gave us time to sit with her in the emergency room. I felt that was very good. It gave me time to handle myself and gave me time to realize what just happened. Many family members began the process of accepting their child s death while present during the resuscitation. Seeing the resuscitation allowed family members to realize the severity of their child s condition. They realized their child wasn t coming back and appreciated being able to spend the final moments they had with their child. One mother who was present during resuscitation stated,... I wanted my son to walk out with me. And I knew that he wasn t going to get up. Closure was not always easily obtained for family members. A mother not present during her infant s resuscitation indicated she had accepted her infant s death but felt pressured by health care providers to see and hold her dead child after she arrived at the hospital. While the mother commented that seeing the baby was beneficial for her husband, it left her with an unwanted memory. All family members interviewed did not believe that being present in the room during resuscitation was equal to being in a private waiting room receiving updates. Family members were concerned about what they would be told in exchange for what they would see. One family member expressed,... I am not going to believe that because I am not physically seeing it. Additionally, family members indicated that being in the waiting room causes anxiety about not knowing. One father noted,... all kinds of things run through your head when stuff like that s happening. Getting In. Family member physical location during resuscitation occurred through several mechanisms. Family members not present were either traveling to the hospital or asked to wait outside. One mother traveling to the hospital commented, When I first arrived, I wanted to see my son and they were like, just a second... it seemed like forever. For others, presence was a passive process. They were in the room and were not asked to leave. Others were invited to be present. Family members of chronically ill children knew the system and insisted on being present. For example, one mother who was well known to the hospital staff stated, It was obvious that I would want to be there. So they grabbed me by the hand and took me in, because they knew I was going to walk in regardless. Information Giving. Regardless of whether family members were dealing with an acute condition or their child was chronically ill, none felt prepared to face the event of resuscitation. The mother of a chronically ill child stated, No, it was not what I expected. It was not something I actually thought about. You never really think about your children leaving you, especially not in that manner. During the stress of observing the resuscitation, family members focused on their child, not the mechanics of the resuscitation. Their concern was the outcome and supporting the child. Therefore, the timing for information giving by the health care team was critical. Family members did not want to be delayed from being with their child.... There s very little time for talking because you just want to be in there...andso for someone to try to actually talk to you and prepare me, I probably wouldn t have wanted to hear that person at that moment. Questions and answers come later. Family members had confidence their questions would be answered. Some family members indicated that having someone such as a 222 Volume 21 Number 4 Journal of Pediatric Health Care

7 family facilitator with them to explain things when requested would have been helpful. An investigator-developed question regarding organ donation yielded additional study findings. Family members were mixed in their response about whether being present would affect organ donation decisions. Some believed their decision would be positively influenced by their presence, as noted by the following mother s statement: I think about watching someone die you know that you could be saving another s life with their organs. Others did not think physical presence would make a difference. When sharing their experience about organ donation requests, family members expressed the importance of not being pressured in their decision. which are facilitated when they are present (Jarvis; Mangurten et al., 2006; Meyers et al., 2000). In the theme Seeing is Believing, family members who were present were reassured by observing that all efforts had been exhausted, which is congruent with the advantages of having the mystery behind closed doors reduced, doubts dispelled, efforts of the team observed (Doyle et al.; Hanson &Strawser; Mangurten et al., 2006; Meyers et al., 2000; Robinson et al., 1998), and closure facilitated (Hanson & Strawser; Mangurten et al., 2005; Meyers et al., 2000). Findings from this study also uncovered inconsistency in mechanisms for family presence, the timing for family entry into the room, and family needs for sensitivity. Mechanisms for family members members requested staff consideration about spending time with their deceased child. They wanted to be afforded an opportunity but not be forced. Family member accounts also dispelled proposed disadvantages about FP. Regarding the concern of disrupted resuscitation (Helmer et al., 2000; Jarvis, 1998; Mangurten et al., 2006; McClenathan et al., 2002; Meyers et al., 2000; Meyers et al., 1998; Redley &Hood, 1996), families shared that it was important to them not to get in the way or interfere with the care of their child. Another proposed disadvantage is the unknown short-term and long-term emotional effects of families being present (McClenathan et al.; Meyers etal.,2000;meyersetal.,1998;robinson et al., 1998). Families derived comfort and reassurance by their DISCUSSION While the findings from this small sample provide insight into family member experiences, they are not intended to be generalized to all settings. Results confirmed commonalities among the experiences of family members of pediatric patients and previous reports of family member experiences (Doyle et al., 1987; Hanson & Strawser, 1992; Jarvis, 1998; Mangurtenetal.,2006;Mangurtenetal., 2005; Meyers et al., 2000; Meyers et al., 1998). In the study theme It s my right, family members expressed the instinctual importance of being there. This family instinct is congruent with the proposed advantage that being present acknowledges the family as part of the patient (Hanson & Strawser; Jarvis;Mangurtenetal.,2006;Mangurten et al., 2005; Meyers et al., 2000; Meyers et al., 1998; Redley & Hood, 1996). In the theme Connection and Comfort, family members wanted to be with their children and did not want them to be afraid, which is congruent with the advantages that bonding, comfort, physical touch, and active participation in the resuscitation, Without a formal FP policy, family member presence is left to staff discretion, which results in inconsistent treatment of family members. physical location during the resuscitation were inconsistent; some were invited in, some were asked to leave, others insisted on being there while others had not yet arrived at the ED. Without a formal FP policy, family member presence is left to staff discretion, which results in inconsistent treatment of family members. Additionally, family members who were present for resuscitation indicated that they wanted to enter the room as quickly as possible and did not need extensive details about the resuscitation. Family members also provided insight into the need for sensitivity and the importance of timing for discussing organ donation. Requests for organs should not be a surprise but mentioned early in the process if possible. Families also asked not to be pressured into a donation decision. Finally, family presence. Mental and physical health summaries were similar to those of the general population. Fear of family members not understanding resuscitation activities is another proposed disadvantage (Helmer et al.; Meyers et al., 1998). Family members who were present focused on the child and the outcome rather than resuscitation details. Finally, a disadvantage cited is FP influencing the duration of resuscitation efforts (Sacchetti et al., 2000).Noneofthefamiliesindicated concern about the length of the resuscitation. Families better understood the gravity of the situation and felt confident everything had been done for their child. LIMITATIONS The primary limitation to this study is the small sample size, Journal of Pediatric Health Care July/August

8 which was affected by several different factors. Institutional criteria only allowed permission to interview family members of children whose resuscitation was initiated prior to arrival at the ED. Inability to contact family members because of change in address or phone number and those who declined to participate also contributed to the small sample size. Findings do not reflect experiences of family members who declined to participate. Another limitation includes the retrospective design, prolonging the time between the event and the interview, resulting in potential recall error of the family member s experience. The time lag also meant that other events could potentially alter responses to the health and mental measures. CONCLUSIONS Whether FP is planned or not, family members commonly are becoming part of the resuscitation process. Current evidence and recommended resuscitation guidelines (AAP/AHA2002;Cummins&Hazinski, 2000; Meyers et al., 2000; Parkman Henderson & Knapp, 2006) support development of FP policies to allow for the option to be present. Institutions can facilitate FP by being prepared to support families desiring to be present. A formal FP policy provides a mechanism for consistently approaching families with the FP option. This study highlighted inequities that exist when formal FP policies are not in place. Consideration of FP policies may provide equal opportunity for access during resuscitation. After families are given the option to be present, it is essential that they be supported in their choice to be present or not. FP policies should rapidly incorporate family members who desire to be present. Families may only need limited information about the resuscitation. A health care provider or other designated facilitator should be available to offer support. The need for continued FP research is crucial. Survey research has provided insight in the attitudes and beliefs of patients, families, and health care providers. While results of a controlled trial might provide reliable evidence to make an informed decision about FP, the sensitive nature of issues surrounding FP makes research challenging. Even without formal policies, family members are permitted to be present during resuscitation. Randomly assigning family members into groups given the option to be present and those not given the option to be present could be construed as depriving them of an option to be present that might have been available. However, prospective quasi-experimental studies may provide additional information. One strategy might compare institutions with and without FP policies. Future research should focus on FP policy development and implementation outcomes. We thank Sandra Trevino, RN, for translation support. 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