Report regarding Parent and Caregiver Presence at Surgical Induction and Recovery - Child and Family in the Healthcare System Working Group

Executive Summary
Surveys of parents, youth, and hospitals and a review of relevant literature make plain that parental presence at surgical induction and recovery remains a contested area. Parents overwhelmingly want to be present at both because they think their presence 1) makes the surgical experience less frightening and safer for their children, 2) signals to them and makes them feel that they are truly “part of the team,” and 3) makes a positive difference over time in the life of their family. Most teenagers report wanting their parents to be present, especially when they were younger, but also wanting to have a choice about parental presence now that they are older. Practices and perspectives among hospitals and often within the same hospital vary considerably, in part, they indicate, because of different views about the evidence of any benefit of parental presence, differences confirmed and illuminated by a literature review.

A more thorough and systematic sharing of information among hospitals, a greater attention to the experiences of patients and families, a broader view of what constitutes effective preparation, and a more comprehensive and imaginative approach to available evidence would help transform a contested space into common ground.

Background
While tremendous progress has been made in the supportive environments for children and families and their inclusion as part of the health care team, there continue to be concerns about significant variability across institutions and examples of poor practices that have had significant impacts on health outcomes. The Coalition has agreed that developing a common vision of how this interaction should occur and identifying / sharing best practices is an important undertaking, especially given the opportunity to have the Canadian Family Advisory Network (CFAN) centrally engaged in this initiative.

The Child & Family in the Health Care System Working Group was established in January 2009 and is comprised of representatives from CFAN, CAPHC, The Canadian Association of Child Life Leaders (CACLL), and several youth councils across Canada (see Appendix 1 for list). Through a process of identifying priority issues, reviewing the literature, collecting data, anecdotal information and stories, this group is working to determine best practices and develop recommendations to be delivered to hospitals, rehabilitation centres, and government.

Introduction
Parental presence at surgical induction (PPI) and parental presence at surgical recovery (PPR) were selected as the first of several priority issues to address because these were the most frequently mentioned and best defined of all the topics identified by families at the 2008 CFAN workshop where the Coalition's Child and Family in the Healthcare System project was launched. As well, the working group recognized this closely linked pair of issues as a perennial area of concern and sometimes conflict, frequently associated with confusion and frustration by parents who often report encountering very different practices, sometimes within the same hospital.

Working on this topic, whether in analyzing survey responses or reviewing relevant literature, illuminated gaps between different (not necessarily opposing) understandings of what is meant by "evidence" and between different views of what kind of evidence is most important or relevant. It also highlighted areas that may be under-investigated and amenable to new ways of approaching or conducting research. In short, what was learned in this initial phase of the project will be very helpful for the work ahead.

Process
The working group created distinct surveys for parents, youth, and hospitals, piloted each, and then distributed them widely between October 2009 and January 2010. The parent survey (Appendix 2) was distributed through parent and family advisory councils across the country. One hundred twenty one parents responded, often in considerable detail. All had a child who had undergone at least one surgery, and nearly half had children who had undergone at least four surgeries. Most of the surgical experiences had occurred within the last few years. The youth survey (Appendix 3) was sent to youth and children's councils attached to paediatric hospitals. Thirty-two youth, 29 of whom were teenagers, responded. The hospital survey (Appendix 4) was sent to 32 hospitals, 16 of which responded.

Various working group members also read reports of much relevant recent research, especially about work done in Canada, and gathered information (additional to what was offered in its survey response) from The Children's Hospital of Eastern Ontario (CHEO) which recently completed a long PPI pilot project. Over the course of eight months working group members analyzed and discussed the survey responses and the results of the informal literature review. More recently they have reviewed drafts of this report and supported its recommendations.

Findings

The Parent Survey
Nearly all (97.3%) of the parents said it was either very important or important for them to be present at induction; approximately a third (33.1%), however, said they had never been present. Almost as many (93.6%) said it was very important or important for them to be in the recovery room when their child awoke, but a quarter (25.7%) said they had never been allowed in. Once parents have been “in,” they almost always want to return. At CHEO 93,9% (31 of 33) of the parents surveyed as part of a pilot project said after their experience of being present at induction that they would like to be present at subsequent inductions.

Striking in many of the responses were the accounts of how parents felt they had to "battle," or "fight hard" to be present at induction or recovery, often after they had already been present on a previous occasion. One parent struck a note common to many: “We struggle repeatedly to make the staff understand that we are capable and confident and will not impede their work and that my son recovers with less struggle and instability when there is a parent present as he regains consciousness.” Here and elsewhere the tone is more indicative of a plea than a demand.

Many mentioned that being denied access made them question whether they were really, as they were often told, “part of the team.” On the other hand, many emphasized how much they felt their role on their child’s team was ratified and strengthened when their presence during induction or at recovery was supported and treated as “normal, like [they] belonged there.” Several mentioned wonderful experiences when staff, usually child life specialists and sometimes nurses, prepared them not only for gowning and other procedures to reduce the possibility of infection but for supporting their child in a strange environment. As one parent commented, “Preparation is key. Not knowing that your child will become quite heavy in your arms as they settle to sleep can be un-nerving if you’re not aware.” Another praised a child life specialist “who gave us language with which to speak about the surgery with our three-year old.”

The great majority of parents thought their presence made—or would have made—their children feel less anxious and afraid, safer and less alone. Many also noted various ways their presence was a particular help to staff, especially in increasing the safety of their children. One noted: “Our daughter was trached for many years and we had a good sense of her suctioning needs. Over suctioning caused serious problems for her. On a couple of occasions when we came into the recovery room, nurses were over suctioning and our daughter was very upset. We were able to calm her, get her to cough productively and avoid the need for potentially damaging aggressive suctioning to clear her airway.”

Parents of children with developmental and other chronic conditions supplied example upon example of how crucial they felt their presence was in helping both their children and the staff understand one another. Here’s one parent’s account: “My son (J) is blind and very developmentally delayed. He gets very uptight when in new places. When he went into the OR to have his shunt replaced, I was able to be with him. I was able to translate to the doctors what he was trying to communicate. J loves music so I was able to sing to him his favourite song, Zip a dee doo dah, until he fell asleep fully relaxed. The problem was the staff could not get the song out of their heads all though the surgery. They were all singing in the OR and continued to sing it all day ... But J was OK.”

Finally, the vividness of most of the parents’ accounts implicitly testified to the lasting effect of those brief but intense experiences in or around the operating room. Sometimes the experience was paradoxically wonderful, as it was for a mother who recalled carrying her already sedated child into the operating suite, laying him on the table, and continuing to hold him while the anaesthesiologist inserted the needle in his hand before her child drifted off to sleep: “Very peaceful. This image sustained me while we went through the roller coaster ride of the ICU and beyond until he was fully recovered.” Another mother, in sharp contrast, reflects as follows on her daughter’s death: “The one thing that still haunts me is turning her over to the nurse on the day of her surgery. First of all, I had expected to be with her until she slept as this was repeatedly told to us. We were prepped for this the day before and we were looking forward to this as it gave us a sense of comfort, especially knowing our child. When we were told to hand her over as opposed to taking her ourselves, I was surprised and dismayed and my first instinct was to refuse. However the pressure of knowing that she needed this procedure made the decision, to not protest, for me.”

The Youth Survey
The 32 youth who responded to the survey designed for them—first piloted with a few youth and then amended in response to their suggestions—did so with their colleagues at youth council meetings. All but three (two of whom were 11-years old and one 12-years old) were teenagers.

Just over half said they wanted a parent present with them at induction and in recovery because it made them—or would have made them--feel safer, more comfortable and less alone. One said “If my parents had of been in the room, I think that I would have felt a lot more secure and confident in what was about to happen. I found that being alone made it frightening (more so when I was eight).”

This sense that parental presence at induction and recovery was more important when they were younger was quite common. As one youth remarked, “When I was younger, it would have made me more comfortable with surgery; however, now I am used to it. I do not prefer anyone with me now because I think I would become emotional.” One even said he would prefer not to have a parent in the recovery room with him because he was concerned how seeing him in a post-operative state would make his parents feel.

Several of the teenagers expressed a preference to be asked whether they wanted a parent to be present during induction and in recovery and to have their choices respected.

The Hospital Survey
The 16 hospitals that responded to the survey varied considerably in their practices, in their reasons for providing or not providing PPI and/or PPR, and in their dispositions toward the issue.
While one hospital said it “always” gives parents the option to be present at induction, five said they “usually” do, eight said they “occasionally” do, and two (both community hospitals) said they “never” do. Seven responded to the question of why they at least sometimes provided such opportunities. Some cited the desire to be more family-centred while others said they did so to reduce patient or parent anxiety or to increase patient and family satisfaction. Very similar rates and reasons were given in response to questions about PPR.
The two hospitals that do not allow PPI or PPR both identified “research doesn’t show evidence of benefits or positive outcomes” as a reason and noted resistance from some staff, something that was also noted by some of the hospitals that do allow PPI and PPR at least occasionally. A few of the community hospitals expressed a wish for “more consensus from across Canada,” more evidence, more guidelines, etc.
When asked if they had ever surveyed parents or families about PPI or PPR, five of the 16 said they had done so formally and the same number said they had done so informally—all reporting that parents were supportive, sometimes “overwhelmingly” so, of the practice. Six hospitals said they had either never surveyed families or did not know if they had.

The hospital with the most detailed answers reported the most success. It cited defining PPI as “a quality improvement initiative,” inviting both “champions” and “naysayers” to participate on a working group to investigate the issue and design a pilot project, conducting an extensive literature search and a “peer best practice review,” devising an education program for departments, staff, and families, and carefully evaluating and responding to the results of an extended pilot project as keys to what both the hospital and families regard—thus far—as a highly successful initiative.

Research and Evidence
The working group did not do an extensive literature search about PPI or PPR, but it was clear that there has indeed been a good deal of relevant research in the past twenty years or more. A consensus, based on the results of measuring heart rates, blood pressure and visual and behavioural indications of anxiety, seems to have developed that parental presence at induction does not, in fact, reduce anxiety in either the parent or the child. Sometimes, when, for instance, the parent is visibly distressed, it even increases anxiety, and sometimes, when, for instance the parent is quite calm, it reduces it. Overall, there seems to be general agreement that PPI and PPR are usually helpful when the child has a mental health or developmental condition or is undergoing repeated surgeries/procedures. The hospital survey responses suggest, though, that PPI and PPR are unavailable in some hospitals even in these instances.

Many of the studies seem entirely focused on the particular event—what happened in and around the OR at a given time on a given day—but there are studies that look at the surgical experience within a wider frame. One recent study (Kain ZN et al. 2007) looked at the effects of “a family-oriented behavioural preparation program” and concluded that it reduced “perioperative anxiety and postoperative analgesic requirements” and improved “postoperative outcomes in children and their parents.” And an even more recent study conducted in Alberta (Lardner, Dick, and Crawford 2010) found that while “parental presence in the PACU did not affect crying in the PACU ... 2 weeks postoperatively children who had a parent in the PACU had less negative behaviour change.”

Perhaps assessing behaviour, especially in a family’s home, is harder than measuring pulse rates in an OR. The former, however, is probably the more important measure of parental presence—for the child and the parents. It certainly recognizes the reality that the surgical experience is not a discreet event in the life of a child and family but one that lives on and has consequences within the intertwined lives of everyone in the family.

One of the hospitals commented in its response to the survey that it is important to remember that the child and not the parent is the patient and the patient must remain the focus of attention. A careful reading of all 121 of the parent responses, however, will not uncover a single request or suggestion that hospitals focus more attention on parents. Almost to a person however, the parents do assert, sometimes explicitly, an important connection, in some cases an intimate one, between their child’s well-being and their own. “Subjective parent self-reports” of their children’s surgical experiences and of their own involvement—or lack of involvement—in those experiences may not tell the whole story, but to label them as “biased representations” risks obscuring their very real value. The same applies, of course, to patients’ “self-reports.” They may complicate the research picture, but they offer essential evidence.

Recommendations

[Clarification from a report author: "The Coalition Steering Committee has yet to approve of the recommendations because some feel they need to check first with the organizations they represent, because some want to have an implementation plan in place before they vote to approve the recommendations  and because one of the recommendations--about youth 13 and over--needs to aligned with existing laws, policies, and practices related to consent. The Steering Committee encouraged us to share what we learned  from our surveys and the informal literature review." Frank Gavin]


1. That each hospital where children and youth undergo surgery consider the benefits of parental presence identified in this report when deciding whether to allow or expand parental presence at induction and in the recovery room and actively seek to learn about the experiences of other hospitals that have established programs that facilitate parental presence.
2. That CAPHC make information about member hospitals’ policies, practices, and evaluations related to parental presence at induction and in recovery available on its website.
3. That each hospital where children undergo surgery inform parents when elective surgeries are scheduled whether a parent can be present at induction and recovery, what preparation the hospital offers and/or requires, and, if parental presence is sometimes offered and sometimes not, why parental presence at induction and recovery is not always possible.
4. That in hospitals that allow parents the choice to be present at induction those hospitals offer, and parents be required to participate in, a preparation session, program, process, or meeting that not only informs them about what they need to know and do (e.g. wear gowns, wash with special soap, etc) but empowers them in their role of supporting their children during their surgical experience and afterwards.
5. That youth 13-years old and older be offered the choice to decide at what point, if any, during the surgery experience they might like to have a parent present to support them.
6. That researchers investigating topics related to the experience of children, youth, and families in the healthcare system involve children, youth, and families in all phases of their research, including the formulation of research questions and the evaluation, dissemination, and application of their research findings.

Members of the Working Group

Co-Chairs:
Frank Gavin (Past Chair, CFAN)
Sue Robins (Chair, CFAN)

Melissa Clulow (CCYHC Coordinator)
Pat Elliott-Miller (Vice-President, Patient Services and Chief Nursing Executive, CHEO)
Diane Hart (Supervisor, Child Life Department, BC Children’s Hospital)
Lisa Hawthornthwaite (Family-Centred Care Specialist, Children’s Hospital, LHSC and Vice-Chair, CFAN)
Tamara Krbavac (Child Life Specialist, McMaster Children’s Hospital)
Cathy Laycock (Parent, Lloydminster, Alberta)
Elaine Orrbine (CEO, CAPHC)

Michelle Wilband (Coordinator, Child Life Department, Children’s Hospital, LHSC)
Sherri Wuetherick (Steering Committee, CFAN)

Crystal Chin (Youth Advisory Council, Holland Bloorview Kids Rehab)
Hannah Badcock (Youth Advisory Council, Children’s Hospital, LHSC)
Amber Pelzer, deceased (Youth Advisory Council, McMaster Children’s)
Jacqueline Wigle (Youth Advisory Council, IWK)