Family presence during resuscitation and invasive procedures

Collegian (2009) 16, 101 118 available at www.sciencedirect.com SCHOLARLY CRITIQUE Family presence during resuscitation and invasive procedures Alister N. Hodge, RN, BN, Grad. Cert. Critical Care, Master of Nursing a,b,, Andrea P. Marshall, RN, IC Cert., BN, MN (Research), Grad. Cert. Ed. Studies (Higher Ed.) c,1 a Services, Blacktown and Mt Druitt Hospital, 19 Flora Street, Arncliffe 2205, Australia b Faculty of Nursing and Midwifery, The University of Sydney, Australia c Critical Care Faculty of Nursing and Midwifery (MO2), The University of Sydney, Australia Received 4 March 2008; received in revised form 20 April 2009; accepted 28 April 2009 KEYWORDS Family Presence; Resuscitation; Invasive procedures; Abstract The practice of allowing family to be present during patient resuscitation or invasive procedures (Family Presence) is gaining acceptance in North America and the United Kingdom in controlled circumstances. Research into Family Presence has demonstrated multiple benefits for the patient, family and health care team. These advantages include helping the family to understand the severity of the illness/trauma and to see that appropriate attempts were undertaken to save their loved one. Family Presence can also facilitate improved communication between the health care team and family. In spite of evidence supporting Family Presence as a useful practice for patient, family and health care team, the use of Family Presence is uncommon within Australian departments and hospitals. Clear expectations at organisational, governmental and professional levels are essential to effectively implement this approach. To be supported in the clinical area, the success of a Family Presence program requires an inclusive approach to program development. A critical component of a successful Family Presence program is a family facilitator who is adequately prepared for the role and committed to supporting the family during resuscitation or invasive procedures. Research exploring Family Presence in Australia is lacking and highlights the need for context specific research in this area. 2009 Published by Elsevier Australia (a division of Reed International Books Australia Pty Ltd) on behalf of Royal College of Nursing, Australia. Corresponding author at: 19 Flora Street, Arncliffe 2205, Australia. Tel.: +61 02 9881 8868/0407164918 (mobile); fax: +61 02 9881 8532. E-mail addresses: Alister.Hodge@swahs.health.nsw.gov.au (A.N. Hodge), a.marshall@usyd.edu.au (A.P. Marshall). 1 Tel.: +61 02 9351 0638; fax: +61 02 9351 0615. 1322-7696/$ see front matter 2009 Published by Elsevier Australia (a division of Reed International Books Australia Pty Ltd) on behalf of Royal College of Nursing, Australia. doi:10.1016/j.colegn.2009.04.003

102 A.N. Hodge, A.P. Marshall Contents Introduction... 102 Development of Family Presence as a strategy for family and patient care... 102 Search methods... 102 Search strategy... 102 Inclusion criteria... 102 Screening and data extraction... 103 Results... 103 Healthcare teams opinions prior to exposure to Family Presence... 103 Unrealised concerns related to Family Presence... 114 Patient and family perspective of Family Presence... 114 Enabling factors for Family Presence... 115 Family presence in Australia... 116 Recommendations for further study... 116 Conclusion... 117 Conflict of interest... 117 Acknowledgements... 117 References... 117 Introduction In America and the United Kingdom, the practice of allowing family to be present during resuscitation events and invasive procedures is gaining acceptance as a viable proposition in controlled circumstances. Research into Family Presence suggests multiple benefits for the patient, their family and health care workers (Meyers et al., 2000). In spite of a growing body of evidence supporting Family Presence as a useful activity, the practice of Family Presence is uncommon within Australian departments and hospitals. Traditionally, the resuscitation of the patient occurs behind closed doors. This limits the access of family members to their loved one, resulting in unmet needs. In the advent of an unsuccessful resuscitation, families are usually allowed to see the patient only after the patient has been made presentable, thus creating an environment that belies the true sequence of events and contributes to the families confusion and misinterpretation of what has transpired (Timmermans, 1997). Development of Family Presence as a strategy for family and patient care Family Presence was first described in 1982 by staff at the Foote Hospital in America where family members were allowed to be present in the resuscitation room and provided with appropriate support. The program was initiated after two families requested to be present during resuscitation, prompting the department to conduct a retrospective survey of 18 family members who had recently lost a loved one. The survey identified 13 (71%) relatives who responded positively to the option of being present in the resuscitation room (Hanson & Strawser, 1992), and subsequently led to the development of their Family Presence program. Initial fears of Foote Hospital clinicians that family members would disrupt procedures or be further traumatised by witnessing events were not realised (Hanson & Strawser, 1992). Since this initial work was reported, further research into the implementation of Family Presence has been completed, primarily in America and the United Kingdom where the practice of Family Presence has become more common. Outside of these two countries, research appears to be mainly focused upon staff opinions on the practice of Family Presence and has not progressed to the stage of guideline implementation. Although there is a growing body of knowledge upon Family Presence overseas, there is still relatively little within the Australian clinical context. This paper aims to present a comprehensive review of the available research into Family Presence in the context of department patient care. This review will be used to inform debate surrounding the use of Family Presence as an intervention within Australian departments. Search methods Search strategy We searched the Cumulative Index for Nursing and Allied Health Literature (CINAHL) and Medline (see Table 1). Grey literature (e.g. conference proceedings) were not included in the search strategy as it has been reported that this literature infrequently yields much relevant material (Scott- Findlay & Estabrooks, 2006). Inclusion criteria We reviewed articles published in English examining Family Presence during invasive procedures or resuscitation in the context of nursing practice. The search strategies were run without restricting the search to literature published in English but did not locate any non-english titles. Only papers that were reports of research were included. No restrictions on the research design of the articles were made.

Family presence during resuscitation 103 Table 1 Search strategy. The following bibliographical databases were searched: CINAHL (1982 week 4 July 2008), and Medline 1950 to July Week 1 2008 Exp family OR Exp Family Presence OR Exp family attitudes OR Professional family relations OR Presence AND Exp resuscitation OR Exp invasive procedure OR AND Exp emergencies OR Exp services Exp * Screening and data extraction The search strategy generated 369 titles and abstracts. The first author electronically assessed the titles and abstracts (when available) using preliminary inclusion criteria. A high number of papers that were not research-based were located using these search terms. After exclusion of articles that were not research based, 61 articles were identified, of which 11 were duplicates. Fifty articles were successfully retrieved. Each article was independently reviewed by both authors against the inclusion criteria. Three inclusion criteria guided the retrieval strategy: (1) the report of an original research study; (2) a study focus on Family Presence during either invasive procedures or resuscitation; and (3) the conduct of the study in the context of department clinical practice. Where discrepancies occurred regarding the inclusion or critique of a particular article, the authors discussed aspects of the article before deciding on the inclusion of the article. Thirty-two articles remained post-review of inclusion criteria and underwent a full review. The results of this process are illustrated in Fig. 1. Healthcare teams opinions prior to exposure to Family Presence Traditionally, healthcare teams have not been receptive to Family Presence during resuscitation and invasive procedures. An overarching concern emerging from the literature is that Family Presence would interfere with patient care (Fein, Ganesh, & Alpern, 2004; Sacchetti, Paston, & Carraccio, 2005). Reasons why Family Presence has not been supported include the paternalistic notion that sensory disturbances of trauma resuscitation, such as smell, blood, and patient distress, would be emotionally and psychologically traumatic for the family (Back & Rooke, 1994; Goodenough & Brysiewicz, 2003; Ong, Chang, Srither, & Lim, 2004) and contribute to uncontrolled grief and disruption in resuscitation efforts (Hanson & Strawser, 1992). Concern surrounding patient confidentiality was also expressed because the patient s clinical condition may often preclude the ability to give consent (Helmer, Smith, Dort, Shapiro, & Katan, 2000). A fear that Family Presence would lead to an increase in complaints and/or litigation has also been identified (Hanson & Strawser, 1992; Macy et al., 2006; Ong et al., 2004). Other authors have suggested that Family Presence might increase stress within the resuscitation team (Goodenough & Brysiewicz, 2003; Holzhauser & Finucane, 2007; Ong et al., 2004; Yanturali et al., 2005) and inhibit coping mechanisms such as using black humour (Timmermans, 1997). It has also been hypothesised that Family Presence may impede training of health professionals. (Fein et al., Results Each author independently critiqued each of the 32 articles selected for review. For consistency in analysis, a data extraction tool was used with the following data retrieved from each article: research design, setting, sample type, sample size, instruments used, analysis, and limitations. Details of the articles reviewed are provided in Table 2. Analysis of the 32 articles selected for inclusion in this review assisted in identifying several issues that are important to consider in determining the viability of Family Presence. The impact of Family Presence on clinicians, patients, their families and clinical outcomes need to be considered as well as the barriers and facilitators to implementation. In order to implement this model of intervention in the Australian setting it is important to consider published experience to date and contextual factors in the Australian practice setting. Fig. 1 Results of search strategy.

Table 2 Family Presence articles included in the review. Back and Rooke (1994) Barratt and Wallis (1997) Bassler (1999) Research purpose Setting Sample size and type Views of medical and nursing staff regarding FP during resuscitation To investigate whether bereaved next of kin would like to have been present n the resuscitation room during attempted cardiopulmonary resuscitation of their relative, and their experience or knowledge of what is involved in cardiopulmonary resuscitation. Examined if a class given to critical care and nurses could change nurses beliefs regarding the presence of family members in the resuscitation room. department in UK hospital Inner city teaching hospital in London. Critical care and nurses from large teaching hospital in America. 20 doctors and nurses (response rate 80%) Next-of-kin of patients over 16 years of age who had died after unsuccessful resuscitation (n = 68; RR 87%). Convenience sample of 46 nurses. Data collection method Questionnaires Questionnaire Quantitative, quasiexperimental study with pre-and post-test survey. Findings The majority of staff agreed family should be allowed to be present during resuscitation (75%). Staff was more in favour of FP during paediatric resuscitation vs. adult resuscitation (65%). Concern expressed about family interfering in resuscitation efforts. Only four participants (11%) had been asked if they wished to be present in the resuscitation room during the resuscitation of their relative. Fifteen (62%) stated unequivocally that they would have chosen to be present. Nurses beliefs regarding Family Presence during resuscitation changed to a statistically significant level after attending an education session on the topic. Limitations Sample, setting and research design poorly described. Small sample size, single centre study. Questions were very focused and did not allow for exploration of individual views of FP or of the experiences of those who were permitted to be in the resuscitation room. Non-randomized convenience sample. Poor description of survey questions. 104 A.N. Hodge, A.P. Marshall

Benjamin et al. (2004) Boi et al. (1999) Booth et al. (2004) To determine patients preferences regarding family member presence during their own resuscitation To investigate whether parents want to be present when invasive procedures are performed on their children in the department. To determine how widely FP is practiced in the UK and to identify any apparent obstacles preventing its more widespread implementation. Waiting room of an urban academic Level 1 trauma centre ED (63,000 patient visits per year). Urban, teaching hospital ED waiting area. Most senior doctor or nurse working in the department. Convenience sample of 200 patients and their families (75% response rate). 400 parents (RR 98%) UK departments Telephone survey Most patients reported wanting a family member present (72%). Twenty-one percent of patients did not want a family member present. Positive responders were younger and more likely to be nonwhite. Fifty-six percent of those who wanted family present only wanted certain members present. Most parents expressed a wish to be present during a procedure performed on their child: venipuncture (n = 387; 97.5%); laceration repair (n = 375, 94%); lumbar puncture (n = 341, 86.5%); endotracheal intubation (n = 317, 80.9%). For major resuscitation 316 (80.7%) wished to be present if their child was conscious, 277 (71.4%) if their child was unconscious and 322 (83.4%) wished to be present if they thought their child were likely to die. Only 26 (6.5%) wanted the physician to determine parental presence in all five scenarios. 162 UK departments provided data. FP was allowed for adult patients by 128 (79%) departments. Ninety-three percent allowed FP if a child was involved. 50% invited relatives to witness. 21% did not permit FP. Perceived benefits were acceptant that all possible had been done (48%), accepting the death (48%) and help with grieving (38%). Sample not representative of the general public because of sampling bias. The scenario presented to participants suggests that family find it emotionally helpful to be present which may have biased the responses to the survey. Scenarios used in the study are hypothetical and therefore not associated with emotions that might otherwise be encountered. As families do not know what to expect their response might not reflect how they feel should the situation occur. The order of scenarios was not varied which may have influenced the response. 75% of respondents were mothers and this may influence the findings. Details of the survey were not provided. Sample reflects the views of the nurse or doctor interviewed and may not represent what was happening at that particular hospital. was not well described. Data did not allow for more extensive exploration of the issues under investigation. Family presence during resuscitation 105

Table 2 (Continued ) Duran et al. (2007) Eichhorn et al. (2001) Engel et al. (2007) Research purpose Setting Sample size and type To describe and compare the beliefs about and attitudes toward Family Presence of clinicians, patients families and patients. To describe the experiences of the patient during Family Presence and resuscitation. To investigate the relationship between prior experience with Family Presence and attitudes towards this practice. department, neonatal intensive care unit and adult ICUs at a 300-bed academic hospital in Denver, Colorado. Dept level-1 trauma center in America. Academic teaching hospital 202 health care providers (RR 18%) responded to the questionnaires. Response rate were physicians (15%), nurses (27%), respiratory therapists (15%). Seventy-two family members (99% RR) and 62 patients (95% response rate) responded to the survey. 9 patients that had invasive procedures 1 patient that had CPR. 178 department attending physicians (n = 25), residents (n = 29), nurses (n = 88)and technicians (n = 36) (response rate 78.1%). Data collection method adapted from the Family Presence study at Parkland Health and Hospital System, Dallas, Texas. Cronbach alpha values for surveys were.97 (health provider survey),.93 (family survey), and.89 (patient survey). Semi-structured interview, open-ended questions. Phone interview approximately 2 months post-event. Interviews lasted approximately 45 min. Questionnaire Findings Patients and their families were positive towards FP. Clinicians had a positive attitude toward Family Presence but had concerns about safety, the emotional responses of the family members, and performance anxiety. Nurses were more favourable towards FP than physicians. Patients thought Family Presence provided benefits for the patient e.g. it comforted them, acted as patient advocate. Patients saw both positive and negative effects on those present, but believed benefits to family outweighed the potential problems. Majority of respondents supported FP across all resuscitation types (adult medical, adult trauma, paediatric medical, paediatric trauma). Provider support for FP strongly correlated with self-reported prior experience. Limitations Low response rate for health care providers may introduce bias based on who wished to participate in the work. Minimal qualitative data obtained, limiting understanding of the issues. Small sample size. Semi-structure interview with limited time frame for interview, possibly contributed limited depth of response from interviewees. Process of questionnaire development and validation not described. Data limited because of data collection strategy so understanding of attitudes could not be explored in more detail. 106 A.N. Hodge, A.P. Marshall

Fein, Ganesh, and Alpern (2004) Goodenough and Brysiewicz (2003) Hanson and Strawser (1992) Helmer, Smith, Dort, Shapiro, and Katan (2000) Investigate health providers perceived advantages and disadvantages of FP for invasive procedures and resuscitation in the paediatric department. To explore the attitudes and practices of witnessed resuscitation of department staff Evaluation of a program of Family Presence To assess opinions of members of the American Association for the Surgery of Trauma (AAST) and the Nurses Association (ENA) regarding Family Presence in Resuscitation. Urban tertiary care paediatric hospital with 60,000 patients per year. Level I department in KwaZulu-Natal Province, South Africa 500 bed urban community hospital with 53,000 patients per year Mailed survey 104 participants (response rate 71%) ED faculty (n = 19; RR 95%), ED nursing staff (n = 29; RR 81%) and paediatric residents (n = 56; RR 62%). 6 participants (2 doctors and 4 registered nurses) 47 family members. Nurses (sample size not provided) sent to all members of AAST n = 813, and a 10% random sample of ENA members. returned: AAST n = 368 ENA n = 1261. Semistructured interview Mailed survey ED staff support FP for minor procedures but are concerned of the impact on family and success of the procedure. Most specialists and nurses support FP for invasive procedures and resuscitation but residents do not. department staff disliked the idea of FP, believing it to be harmful for the witness, a threat to patient care and staff. Believed it was impossible to implement. 76% of families felt FP helped their adjustment to death; Thirty (64%) felt their presence was beneficial to the dying person. Before the program nurses had fear that families would be disruptive or interfere and that grieving families would make it difficult for nurses emotionally. These concerns were not realised during the program. of registered nurses after the program revealed some increase in stress but 71% supported FP. Significant difference between attitudes of AAST and ENA members towards Family Presence. 63.6% of ENA members found Family Presence as a beneficial experience, compared with only 17.5% of AAST members. Self-report data; single centre study; poor representation of nursing staff in sample. Limited representation of staff working in the department Self-report data; single centre study; response rate not provided; details of program evaluation limited. Non-response rate 56% from AAST. Family presence during resuscitation 107

Table 2 (Continued ) Holzhauser, Finucane, and De Vries (2006) Holzhauser and Finucane (2007) Holzhauser and Finucane (2008) MacLean et al. (2003) Research purpose Setting Sample size and type What are the relatives attitudes to being present during resuscitation? Is there a difference in staff attitude to relatives presence in resuscitation after the implementation of the project? What were staff attitudes to relatives presence in resuscitation immediately postresuscitation? To identify policies, preferences and practices of critical care and nurses for having families present during resuscitation and invasive procedures. ED of major tertiary referral teaching hospital in Queensland, Australia. ED of major tertiary referral teaching hospital in Queensland, Australia ED of major tertiary referral teaching hospital in Queensland, Australia. Mailed survey 58 families experimental group, 30 families control group Non-probability sampling, pretest/post-test time period 6 months. Pre-test n = 63 Post-test n = 36 staff sample included Nursing, medical and allied health. ED staff (medical, nursing, allied health) postresuscitation. 202 surveys returned. Random sample of 1500 members of American Association of Critical-Care Nurses, and random sample of 1500 members of Nurses Association. Data collection method Randomised controlled trial using survey methodology Findings Association found between those who were present (and their relative survived) and their belief that their presence was beneficial to the patient. Staff felt there were overall positive aspects for relatives being present during resuscitation. Positive change in staff attitudes to FP during resuscitation over time period. Staff reported more advantages than disadvantages to having relatives present. Included able to get history quickly, patient comforted by having relatives present. Only 5% of respondents work in departments with policies allowing Family Presence, however 51% worked on units that allowed it without written polices. Limitations Single centre study Data only concerns patients of adult medical presentations, does not relate to paediatric or trauma situations. Single centre study. Data only concerns patients of adult medical presentations, does not relate to paediatric or trauma situations. Single centre study. Data only concerns patients of adult medical presentations, does not relate to paediatric or trauma situations. 108 A.N. Hodge, A.P. Marshall

Macy et al. (2006) Madden and Condon (2007) Mangurten et al. (2005) To compare the support for, and perceptions of, family witnessed resuscitation in urban and suburban departments To examine nurses current practices and understanding of FP during CPR To determine staff attitudes, concerns, beliefs and individual current practices about Family Presence Two urban and two suburban Midwestern hospitals in the United States. Level I trauma department in an Irish Hospital Department, Dallas, America. 218 ED staff (92.4% RR). The majority of participants were health care providers (60.1%). The remainder were support staff (security, pastoral care, social workers, technicians, etc.) 100 nurses with at least 6 months experience and who dealt with resuscitation efforts 290 health care providers within ED, included nurses, physicians, allied health questionnaire Half (50.9%) felt it was appropriate for an escorted family member to be allowed to be present during a resuscitation attempt. ED personnel in urban settings were less likely to support FP (38.9% urban vs. 62.7% suburban). A minority but substantial percentage (28.7% urban vs. 21.8% suburban) of Ed personnel believed that the practice would increase the potential for malpractice litigation. 58.9% of nurses used FP in their practice or would do so if the opportunity arose (17.8%). Most (74.4%) would prefer a written policy allowing the option of FP during CPR. The most significant barrier to FP was conflicts occurring within the team. Most significant facilitator of FP was an understanding of the benefits to patients and family. Majority of respondents believed they should proved support to family members, felt comfortable performing invasive procedures (IPs) or resuscitation interventions (RIs) with family present, believed family should the option to present, would support a formal written policy in ED for Family Presence. Some anxiety expressed about performance in front of family. Self-report survey may introduce bias. Convenience sample so may not reflect the views of all health care providers working in the area. development and testing not reported. Quantitative design did not allow for nurses perceptions to be explored in detail. Single centre design involving only one group of health professionals. Single centre survey. Low response rate, only 38% of staff in ED not representative sample. consisted of yes/no answers, limited opportunity to expand on opinions. Family presence during resuscitation 109

Table 2 (Continued ) Mangurten et al. (2006) Meyers, Eichhorn, and Guzzetta (1998) Meyers et al. (2000) Research purpose Setting Sample size and type To determine the effectiveness of a Family Presence protocol based on the ENA guidelines in facilitating uninterrupted care and describe parents and providers experiences. To determine the desires, beliefs, and concerns about family presence during CPR of family that had experienced the death of a loved one. To examine the attitudes, benefits, and problems expressed by families and health care providers involved in Family Presence during invasive procedures or CPR. Paediatric department of a level 1 trauma center in America. Department level 1 trauma centre, America. Department, level 1 trauma center, America. 92 health providers and 22 parents of patients. Convenience sample 25 English speaking family members, who had had a family member die in the Department within the last year. Convenience sample of 39 family members and 96 health care providers involved in Family Presence. Data collection method with health providers (nurses, physicians) within 24 h of event. Phone interview with parents using survey 3 months post-event. Phone interview with structured survey Findings 100% of care cases uninterrupted. Parents positive about family presence, believing it helped their child and reported it eased their fears. Providers positive, reporting that presence of parents did not negatively affect care. 80% of family members stated they would have wanted to be present during CPR if given the option, 96% believe families should be able to be with their loved ones, 64% believed that being present would have helped their sorrow following the death. Family members perceived family presence as positive experience, meeting needs of knowing about providing comfort to, and connecting with the patient. 96% of nurses, 79% of physicians, 19% residents supported family presence during resuscitation. Limitations Single centre study. Only 34% of families were interviewed post-study. Closed questions. Between 8 weeks to 1 year had passed since the resus event prior to the family member being interviewed. Only family members assessed as suitable candidates included therefore do not know how representative these families are of population. Interviews conducted 2 months after event and recollections of the event and associated feelings may be prone to recall error. 110 A.N. Hodge, A.P. Marshall

Mian, Warchal, Whitney, Fitzmaurice, and Tancredi (2007) O Connell, Spandorfer, and Zorc (2007) Ong et al. (2004) To design and implement a FP program in the department and to evaluate attitudes and behaviours of nurses and physicians toward FP before and after implementation of the program To evaluate the outcomes of a structured program of FP during paediatric trauma team activations. To assess and compare medical and nursing staff attitudes to FP. 898-bed urban academic medical centre in northeast USA. The department was a level I adult and paediatric trauma centre that received more than 77,000 visits per year. department of an urban, universityaffiliated children s hospital and level I paediatric trauma centre. The centre has approximately 75 000 annual ED visits. Singapore General Hospital. Initial survey: 86 nurses (81% RR). 35 physicians (50% RR) Follow up survey: 89 nurses (80% RR) 14 physicians (23% RR) 197 family members of paediatric trauma patients 132 department staff (RR 82.5%). 2-group pretest/posttest survey, FP evaluation form, medical chart review Selfadministered survey. Nurses support for FP during resuscitation, invasive procedure and trauma resuscitation increased after program implementation. Beliefs about benefits of FP to patients and their families remained low. On the follow up survey physicians showed less support for FP and more concerns about practice issues. There was more support for the statements suggesting that FP is beneficial to patient s families. There were no cases of interference by family members. Seven family members were asked to leave for various reasons. There was no significant difference in times to completion of key components of the trauma evaluation. Health care providers did not think that FP affected medical decision making (97%), institution of patient care (94%), communication amongst providers (92%), and communication with family members (98%). 80% of doctors and 78% of nurses did not believe relatives should be present during resuscitation. Most frequent reasons for this response were: concern that watching the resuscitation process would be traumatic; relatives might ask too many questions or interfere; relatives might cause stress for the staff; and medico-legal issues might arise. Anonymous responses only allowed assessment of group change, not individual change. Poor response rates, particular for medical staff after implementation of the FP program. Only 1 of the 14 physicians attended the educational program and 92% reported no change after program implementation. Convenience sample. Incomplete enrolment (42% of eligible paediatric traumas missed for FP). Injuries were relatively minor and family members infrequently witnessed highly invasive procedures. There was a high rate of previous experience with FP amongst those providing patient care. looked only at the experience of health care providers. Self-report questionnaire provides limited data and does not allow for discovery of meaning. Single centre study which may contribute to bias. Family presence during resuscitation 111

Table 2 (Continued ) Redley and Hood (1996) Robinson and MacKenzie-oss (1998) Sacchetti, Paston, and Carraccio (2005) Research purpose Setting Sample size and type To determine staff attitudes and concerns regarding family presence during resuscitation. To identify if relatives wanted to be present during the resuscitation of a family member and whether witnessing resuscitation had any adverse psychological effects on bereaved relatives. To determine if family members that remain with paediatric patients during invasive procedures interfere with delivery of care. 6 metropolitan Departments in Australia. Department, Cambridge, UK. Department, America. Convenience sample. 132 respondents 74% completed by nurses 26% by medical staff. Family members: 8 in witnessed resus group, 10 in control group. 54 Family members of 18 consecutive ED patients < 18 years old undergoing invasive procedures. Data collection method At 1 and 6 months post-resuscitation, all were interviewed, and asked to complete five questionnaires to assess psychiatric and psychological morbidity. Observational study of family members. Findings 62% of staff would consider Family Presence under controlled circumstances. Most common concern recorded was that procedures involved with resus would offend the family. Relatives who witnessed resus were no more distressed by their experience than controls. No reported adverse psychological effects among relatives that witnessed resus, all who were satisfied with the decision to remain with the patient. Family members were not disruptive to patient care. Limitations did not allow for exploration of individual views. Bias may be evident in concerns about Family Presence, as a list of concerns were supplied for the participants to choose from. Single centre study. Family members of patients that survived resuscitation were not included. Single centre study. Study participation limited to invasive procedures. 112 A.N. Hodge, A.P. Marshall

Timmermans (1997) Weslien, Nilstun, Lundqvist, and Bengt (2006) Yaturali et al. (2005) To explore health care providers perspectives of FP during resuscitation. To illuminate family members experiences and views about being present in the resuscitation room with a relative requiring resuscitation. To investigate Turkish physicians views regarding FP and to determine current practice for FP. Three hospitals in Midwestern USA and one Belgian hospital. departments in two Swedish university hospitals. 19 university-based departments. 57 health care providers working in the department. 17 family members of patients who required resuscitation. Residency trained physicians and medicine residents (n = 239; RR 96%). In depth interviews. Semistructured interview Three resuscitation perspectives were identified including survival perspective (only goal was to save the life); the bifurcated perspective (goal to save the life and care for family members); and holistic perspective (concerned with patient survival but significant others became participants in the resuscitation process). The overall finding was family members being afraid of disturbing the resuscitation efforts. Themes focused on the patient (to be caring for the good of oneself and others); family members (to be dependent on the interplay between trusting oneself and advocating the patient, to be sensitive to one s own emotions and to be reasonable); and health care professionals (to submit or ignore the guidance of the healthcare professional). Higher levels of stress and fear of causing physiological trauma to family members were the most common reason why 83% of participants did not endorse FP. Limited external validity because of non-random selection of participants and single center for data collection. Interviews were conducted between 5 and 34 months after the event which may have influenced recall bias. Limited sample. A large number of patients were unable to be resuscitated which may have influenced the views of the relatives. of medical practitioners only. Details of survey not provided and not report of reliability or validity of instrument. Family presence during resuscitation 113

114 A.N. Hodge, A.P. Marshall 2004; Mian, Warchal, Whitney, Fitzmaurice, & Tancredi, 2007). Unrealised concerns related to Family Presence Beliefs that Family Presence would increase distress for families, increase litigation, influence confidentiality and impact on team performance have not been demonstrated; instead research has highlighted multiple benefits for those involved (Meyers et al., 2000). Robinson and MacKenzie-oss (1998) describe a decrease in worry, anxiety and uncertainty when the family was aware of efforts taken to save the life of the patient. Family Presence also improved understanding of the seriousness of the patient s illness or trauma, and acceptance that everything possible was done for their family member (Booth, Woolrich, & Kinsella, 2004; Fein et al., 2004; Meyers et al., 2000). Nurses indicated they felt more attention was paid to patient dignity and privacy, that it helped to see the patient as a family member and not just an injury (Robinson & MacKenzie-oss, 1998), and that it curtailed non-essential talk at the bed side such as black humour (Meyers et al., 2000). The most common concern noted from health clinicians was that Family Presence may disrupt resuscitation efforts; however, the research has not substantiated this fear. Sacchetti et al. (2005) described only two instances of interference during 54 cases of Family Presence in a paediatric setting, neither of which resulted in harm or prevented the safe completion of the procedure. These findings are supported by a UK study of 25 relatives of resuscitated patients during which there were no reports of interruption (Robinson & MacKenzie-oss, 1998). Similarly in a hospital trial of 65 episodes of Family Presence, not one episode of disruption by families was observed (Mangurten et al., 2005). Meyers et al. (2000) surveyed doctors about Family Presence following implementation of a program in their Department. Eighty-two (85%) health care providers interviewed were comfortable with families being present, 81 (84%) thought that performance and outcomes would have been the same regardless, and 74 (78%) thought treatments were unaffected. Similarly, Mangurten et al. (2006) found that 116 (97%) health care providers interviewed thought Family Presence did not disrupt delivery of care. In an examination of Family Presence in paediatrics, no detrimental effect or improved medical decision making was found in 112 (97%) episodes of care (O Connell et al., 2008). In all three studies, the level of experience of the doctor influenced how comfortable they were with Family Presence. Staff specialists gave much higher approval ratings to Family Presence than residents who claimed higher levels of stress under Family Presence, suggesting that a level of confidence with clinical practice may influence uptake of Family Presence. Concern over potential litigation with Family Presence is described in the literature despite reports that organisations who have implemented Family Presence protocols have not reported a change in their litigation rates. There were few reports in the literature citing problems for health care teams where Family Presence had been instituted. Meyers et al. (2000) found that 9 of 61 (15%) health care providers interviewed thought aggressive treatment and cardio-pulmonary resuscitation (CPR) were extended because of Family Presence even in futile situations. The families influence on resuscitation was also identified by Mangurten at al. (2005) who indicated parents occasionally dictated when to stop resuscitation of their child, but did not specify whether resuscitation was prolonged at parental request or ceased earlier during these circumstances when parents saw that efforts were futile. Health provider concerns regarding Family Presence appear to correlate with a lack of exposure to a structured Family Presence program. Education on Family Presence has been shown by Bassler (1999) to positively change the view of staff in relation to Family Presence. Bassler (1999) looked at 46 critical care nurses and their views towards Family Presence using a pre- and post-test quasi-experimental design. The education session focused on obstacles to letting family into resuscitation situations, present law and hospital policy concerning Family Presence, risk management views, how to support a family during Family Presence, and how to determine when to let families into a resuscitation event. The number of nurses that had positive attitudes to Family Presence in resuscitation significantly increased from 25 (55.6%) before to 40 (88.9%) following an education session. Interestingly, despite the growing acceptance within the UK and America of family in the resuscitation bay, few hospitals have written policies for Family Presence. A survey exploring Family Presence involving 984 members of the Nurses Association (ENA) in America showed that although 422 (45%) of respondents worked on units that allowed Family Presence during resuscitation or invasive procedures, only 51 (5%) respondents worked in hospitals or units with written policies allowing family presence. Nearly all of the respondents had been asked at some time to allow family members to be present during an invasive procedure or resuscitation event (MacLean et al., 2003: 246). In the context of nursing in the UK, survey data revealed that 128 of 162 departments surveyed (79%) allowed Family Presence in adults, and 151 (93%) allowed family presence in paediatrics. Of the 162 departments surveyed, only 18 (11%) had policies covering Family Presence (Booth et al., 2004). A preference for a written policy to guide the application of Family Presence during resuscitation was suggested by the majority of staff (67 staff members, 74.4%) working in a trauma centre in Ireland (Madden & Condon, 2007). Patient and family perspective of Family Presence A small number of studies have managed to describe of Family Presence while undergoing resuscitation or invasive procedures from the perspective of patients. In 2001, Eichhorn, Meyers, Guzetta, Clark, Klein, and Calvin conducted a prospective study of 43 patients to elucidate the patients experience of Family Presence during either an invasive procedure (24 patients, 56%) or resuscitation (19 patients, 44%). Three patients (7%) undergoing invasive procedures died while 17 patients (90%) in the resuscitation group died. Due to this high mortality rate only nine patients were interviewed; only one was from the resuscitation group. While

Family presence during resuscitation 115 undergoing resuscitation or invasive procedures, patients described themselves as feeling afraid, hurt and in pain, however with family at the bedside the patients reported feeling safer, loved, supported, as well as less scared and alone. No patients reported feeling uncomfortable with Family Presence, rather, they reported feeling that family members acted as their advocates during the event. Family Presence helped the patient to tolerate painful or difficult procedures and also helped to humanise the patient for the care provider. Some patient s even thought they received better or more humane care due to the family being present (Eichhorn et al., 2001). Patients viewed Family Presence as their right with a belief that families have an inherent need to be together and that the Family Presence helped them to cope with the crisis. The patients realised that although Family Presence gave them comfort, it also took a toll on their family members in stress. Despite the distress associated with the event, the experience was ultimately perceived as beneficial for giving immediate information about the patient and facilitating the family to cope as a unit (Eichhorn et al., 2001). While this study adds to our understanding of Family Presence, the high mortality rate in the population meant there were only nine patients able to participate. Nevertheless, it is acknowledged that conducting this type of research is inherently difficult due to recruitment issues, and highlights the importance of this work in helping to improve our understanding of this complex social issue. Benjamin, Holger, and Carr (2004) reported a study examining patients preferences for having their family present if they were resuscitated. From a sample of 200 patients, 144 (72%) responded favourably to having family present. Interestingly though, 81 (56%) of those that stated they would allow Family Presence, indicated that they only desired certain family members to be present, with the most common family member identified being first a spouse, then parent. A study by Barratt and Wallis (1998) explored whether the next of kin of patients that had recently died after unsuccessful CPR would have liked to be offered the opportunity of being present during resuscitation of their loved one. Of 35 respondents, 24 (69%) would have liked to be offered the opportunity to be present. Several studies have explored the experience of families who were present during resuscitation of a family member. While families had stated a priority being that they not disturb the resuscitation efforts, and that the most important person to them was the patient (Weslien, Nilstun, Lundqvist, & Bengt, 2006), multiple benefits from the practice were identified. Benefits of Family Presence included an increased understanding of the seriousness of illness/trauma, and a greater sense of empowerment to the family (Meyers, 2000). Meyers et al. (2000) stated that it helped to meet the family s need of knowing what was happening to the patient, that all that could possibly be done for the family member had been completed, and gave the family the chance to act as a patient advocate (Mangurten et al., 2006). Family Presence was also associated with a decrease in anxiety, sense of helplessness and worry in family members (Robinson & MacKenzie-oss, 1998), while being seen to possibly influence improvement in long term mental health with family members experiencing a decreased rate of Post-Traumatic Stress Disorder, intrusive imagery and grief related symptoms (Robinson & MacKenzie-oss, 1998; Meyers et al., 2000; Mangurten et al., 2005). Family Presence facilitated the need of family to feel they had supported, helped and given comfort to the patient in their time of need and decreased the separation anxiety at being removed from the patient (Meyers et al., 2000; Eichhorn et al., 2001). Importantly, for nurses who are already exposed to high rates of work place aggression and violence, Family Presence has been seen to decrease anger towards staff displayed by family members (Meyers et al., 2000). Family Presence also helped to facilitate grieving in an unsuccessful resuscitation (Robinson & MacKenzie-oss, 1998; Meyers et al., 2000). When families were asked if they would choose to be present during resuscitation if the situation arose again, nearly all indicated they would want to be present (Duran, Oman, Jordan, Koziel, & Szymanski, 2007; Mangurten et al., 2005). These findings are supported by Meyers, Eichhorn, and Guzzetta (1998) in a retrospective study of families that had witnessed cardio-pulmonary resuscitation (CPR) on a family member in the department who subsequently died. In the sample of 25 families, 20 (80%) said they would want to be in the room during CPR if given the option. Almost all respondents, 24 of 25 (96%), believed families should be able to be with their loved ones and 17 (68%) believed their presence might have helped the patient. Parents reported a strong wish to be present during resuscitation if their child was likely to die (Boi, Moore, Brummett, & Nelson, 1999). Family Presence with children had similar benefits to the child and family as those voiced in research with adults, and was also noted to provide a calming and supportive effect on the child (Mangurten, 2006). Enabling factors for Family Presence For Family Presence to be successful, it is essential that proper support is provided (Meyers et al., 2000) because many families do not know what to expect and are concerned about their ability to cope. However, when Family Presence is properly facilitated, 37 (95%) of 39 participants remained positive about the experience. This demonstrates the importance of clear communication to ensure the family is prepared prior to bringing them to the bedside. The lack of a support person for the family members during Family Presence seems to be a major factor impacting on the success of the activity. One of the roles of the facilitator should be, in conjunction with the health team, to help identify appropriate family members for involvement (Meyers et al., 2000). People who may not be suitable to support a family member during resuscitation include persons who display the following: extreme emotional instability, behaviours consistent with altered mental status, are under the influence of any drug, persons of a non-english speaking background unless an appropriately skilled translator is available, or those under suspicion of child abuse (Meyers et al., 2000). For those family members who are considered appropriate candidates, the option of being present during resuscitation or invasive procedures should be offered. If the family consents to being involved, they should first be provided information about what they are likely to

116 A.N. Hodge, A.P. Marshall Table 3 Family facilitator support interventions (Eichhorn et al., 1996: 68). Assess appropriate candidates for Family Presence. Obtain information about the state of the patient, identified needs and response to treatment. Communicate information regarding patient status. Facilitate family involvement according to the patient s wishes, or if unable to consent, then families wishes. Brief family about the likely sights and sounds of resuscitation. Offer and provide measures of comfort. Explain interventions. Interpret nursing and medical jargon. Provide information regarding the patient s response to treatment and expected outcomes. Provide opportunity to ask questions. Provide opportunity to see, touch and speak to patient prior to transfer from the department. Never leave a family member unattended during a resuscitation while at bedside or in the resuscitation bay, or through procedure. Participate in evaluation of the health care teams and your own emotional needs, assist in identifying need for debriefing. Initiate and coordinate family bereavement follow-up at agreed intervals. experience. The facilitator must stay with family members throughout the resuscitation, providing explanations for how and why certain procedures are being completed, and be able to escort the family away if the situation becomes too much for them or is deemed inappropriate by the medical team leader (Meyers et al., 2000). It must be made clear how many family members may be present at a given time due to restricted space in a resuscitation room. Family Facilitator supportive interventions for the family are documented in Table 3. At present there is no clear consensus on who should take on the role of the Family Facilitator, or what qualifications they should have. Various professional backgrounds have been utilised for the role including clergy, social work, nursing and medical staff (Eichhorn et al., 2001), although, no profession has been identified at completing the role more successfully than another. One of the major functions of the Family Facilitator is to explain to the family member what is happening to the patient and why therefore, it is logical that the facilitator must have the clinical knowledge and experience to articulate this information accurately in language that the lay person will understand. In the Australian setting, this role could arguably be best completed by a Registered Nurse who is trained in resuscitation and therefore able to understand and explain all that is happening to the family member. Currently, critical care areas throughout Australia are experiencing chronic skilled staff shortages. Providing a Family Facilitator with the appropriate skill and knowledge, requires careful consideration of the skill mix and the impact this might have on the ability for the organisation to provide appropriately trained staff to facilitate Family Presence. Family presence in Australia The majority of research into Family Presence has been conducted outside Australia in different health care systems and cultures; therefore it remains imperative that a body of knowledge on this topic is developed in the Australian context. Family Presence within Australia is still in its infancy, with few studies on Family Presence undertaken. Redley and Hood (1996) conducted a survey of medical and nursing staff across six metropolitan hospitals in Melbourne. This study aimed to determine staff attitudes and concerns regarding Family Presence during resuscitation. Data was obtained via a survey of 133 staff, and identified that 82 (62%) respondents would consider Family Presence under controlled circumstances. In 2006, Holzhauser, Finucane and De Vries conducted a 3-year study of Family Presence in the department of a major Queensland teaching hospital (Holzhauser, Finucane, & De Vries, 2006). The study aimed to examine 3 main areas: (1) the attitudes of relatives to being present during resuscitation; (2) to identify if there is difference in staff s attitude to relatives presence in the resuscitation room post-implementation of the project; and (3) staff attitudes to relatives presence in resuscitation immediately post-resuscitation. An association was reported between families that were present during resuscitation, and their belief that their presence helped the patient. The family members found it beneficial to be present in the resuscitation room, and family member presence during resuscitation was found to help communication between staff and the family, and helped the relatives to cope with the situation (Holzhauser et al., 2006). Staff felt there were overall positive aspects for family being present during resuscitation, with a positive change in staff attitudes to Family Presence occurring during the research period (Holzhauser & Finucane, 2007). When surveyed post-resuscitation event, staff reported more advantages than disadvantages to allowing a family member to be present. Advantages included being able to obtain a patient history quickly, and the patient being comforted by having relatives present (Holzhauser & Finucane, 2008). Importantly, these three studies utilised a dedicated Family Facilitator during episodes of Family Presence where social work, pastoral care and nursing staff were used to provide the role of a Family Facilitator (Holzhauser et al., 2006; Holzhauser & Finucane, 2007; Holzhauser & Finucane, 2008). Recommendations for further study To date there has been minimal research into Family Presence programs in the Australian context. Further research into Family Presence in this setting should be implemented to determine if similarities exist between the experiences in America and UK. Notably, there has been minimal research into Family Presence from the perspective of the patient and, although challenging to conduct, identifies an important area for future research. The research to date also suggests that the facilitator role plays an important part in the success of Family Presence. However, a more detailed understanding of this role is warranted. Such research should include an examination of the effectiveness of both clini-