Barriers and facilitators to implementing a process to enable parent escalation of care for the deteriorating child in hospital

Abstract Objective To identify barriers and facilitators to implementing a parent escalation of care process: Calling for Help (C4H). Design Audits, semi‐structured interviews and focus groups guided by the Theoretical Domains Framework. Setting Australian paediatric hospital where a parent escalation of care process was introduced in the previous 6 months. Participants Four children, 13 parents, 91 nurses and doctors including Medical Emergency Team (MET) members. Main outcome measures Parent awareness and involvement in escalating care and factors impacting implementation of C4H. Results Two audits identified low level of parent awareness (16/88, 19% and 5/85, 6%). Parent involvement in escalation of care was documented in 11/62 (18%) events. The main facilitators included uniformly positive views that C4H was in the child's best interest, acknowledgement that parents had skills to recognize deterioration and would take action. C4H was considered to add to patient safety and being reviewed by the MET was a patient benefit. Key barriers were the low level of awareness, doubt about parent capabilities, concern about parents’ information overload, anticipated overuse of resources, staff unease about possible repercussions and anticipated difficulty for parents to question staff with potential negative effects on parent‐staff relationships. Overall C4H presents a challenge to traditional hospital hierarchy and culture. Conclusions Although there was a low level of awareness about C4H in practice, there was in‐principle support for the concept. Initial strategies had primarily targeted policy change without taking into account the need for practice and organizational behaviour changes. Using a theoretical approach to identify key factors will enable a targeted approach to implementation.


| INTRODUC TI ON
The concept of family-centred care is based on the belief that in health care, a child's developmental and socio-emotional needs are best met when the family are involved in planning, delivering and evaluating care. 1 The important role that families contribute to patient outcomes extends to the family's contribution in the early detection of patient clinical deterioration. Rapid Response Systems aim to improve the detection and management of deterioration for patients in hospital. 2 Although families do not have responsibility for the formal assessment of clinical changes in patient condition, their familiarity and continued presence with their child place them at an advantage in recognizing early signs of deterioration.
How family involvement in Rapid Response Systems has been implemented and evaluated in the USA and UK [3][4][5] context was the focus of three recent reviews. Evaluations reported uniformly positive family satisfaction. [6][7][8][9][10] Families were happy that there was a process in place for them to voice concerns, irrespective of whether they initiated an escalation of care call or not. Health-care professional attitudes have been reported as barriers to family-initiated escalation of care. Concerns have been raised that family-initiated escalation of care calls would result in numerous calls for non-urgent situations 11 ; about possible repercussions following family escalation care for a patient they were responsible for 9 ; feeling loss of control; becoming deskilled; and health-care professionals' decision making being undermined by families. 10 Interestingly, following introduction of family escalation of care programmes, an increased number of staff escalation calls have been noted, 8,12,13 possibly indicating behaviour change by staff when they responded to family concerns. None of the articles described any guidelines for intervention development, implementation and evaluation or used a theoretical foundation. There is no research reporting the most effective way to involve families in escalation of care. 14 A process for parent escalation of care was introduced at the paediatric hospital in Western Australia in 2015 and it was opportune to evaluate the effectiveness of implementation and sustainability. This study is part of the PARTNER Project which examined and addressed implementation issues organized in three phases: Phase 1-identification of barriers and facilitators to implementation, Phase 2-implementing a revised parent escalation of care process and Phase 3-evaluation.
The Theoretical Domains Framework 15 and an Integrated Knowledge Translation 16 approach involved establishing the Study Steering Group (consisting of researchers, clinicians and consumers) to inform the approach to and guide the conduct of the study. This paper reports on Phase 1: examining the implementation of the process for parent escalation of care to identify barriers and facilitators.

| Setting
The study site is a specialist paediatric facility offering a full range of services to children from 0 to 16 years. A two-tiered Rapid Response System consisted of a Medical Emergency Team (MET) call when early recognition and response to clinical deterioration were triggered and a Code Blue call when a resuscitation response was required. The Children's Early Warning Tool 17 is an age-specific observation chart for monitoring vital signs and oxygen therapy which are calculated into a composite score between 1 and 20 which is then used as a trigger to escalate care if the score is increasing. For example, a score between 4 and 5 requires notification of the nurse in charge and a medical review, a score between 6 and 7 requires a more senior medical review within 15 minutes and notification of the treating physician, and a score of 8 or greater necessitates an emergency call with a MET response within 5 mins.
In May 2015, the locally developed parent escalation of care process, named Calling for Help (C4H), was introduced, consisting of updates to the existing Rapid Response System policies and guidelines and distribution of parent information brochures. The C4H process was developed in consultation with the hospital Consumer Advisory Council and involved five steps for parents to incrementally escalate their concerns (see Figure 1).

| Design
Any implementation research aiming to generate knowledge that is generalizable should be guided by theory, yet few theory-based implementation studies have been reported. 15

| Data collection
Parent escalation of care was measured using the level of parent awareness about the process and the rate of activation. 22 Following introduction of the C4H process in May 2015, data were collected over 8 months using three sources to (i) measure parent awareness of C4H to understand the effectiveness of implementation, (ii) describe how parents were involved in escalation of care, and (iii) identify barriers and facilitators for parent involvement in escalation of care (see Figure 2). Facility Human Research Ethics Committees approved the study protocol.

| Parent audit
Two audits were conducted (4 weeks apart) to identify the level of parent awareness about the C4H process. These were performed by asking all parents who accompanied their child in inpatient areas on the days of the audits if they were aware of the C4H. Parents were also asked how they would escalate their concerns if worried about their child's medical condition.

| Patient record review
Health records of patients who had received MET calls in the 6 months following C4H introduction were analysed to describe their characteristics and identify how parents were involved in escalation of care in the eight hours prior to the MET call being placed.

| Interviews
Stakeholder interviews and focus groups were conducted using a semi-structured interview guide developed using the Theoretical Domains Framework, tested and refined prior to data collection (Supporting Information-called PARTNER project interview guide).
The lead researcher (a female PhD-prepared nurse researcher experienced in conducting interviews and focus groups) conducted all staff interviews and focus groups and supervised the parent and child interviews. She was known to some staff participants as a staff member but did not work with or have influence on their work. She had no prior relationship with any of the parent or child participants.
The duration of the interviews and focus groups was between 20 and 60 minutes.
Participants were (i) parents of patients who had received a MET call during their stay in hospital were contacted by mail and telephoned with an invitation to participate, (ii) children aged at least 12 years who had experienced an inpatient admission for greater than 48 hours were recruited by advertising in patient areas and through clinical nurse managers of inpatient areas identifying potential participants, and (iii) nurses and doctors were recruited by advertising through the hospital email, newsletters and scheduling focus groups for ward nurses.

| Data analysis
Patient and participant characteristics and audit results were collated using descriptive statistics. The COREQ checklist for interviews and focus groups 23 and standards for reporting qualitative research 24 guided the qualitative study reporting. Interviews and focus groups were audio-recorded and transcribed verbatim. Qualitative data analysis was undertaken using the framework approach. [25][26][27] This methodological approach enabled the systematic integration of data driven codes with theory-driven categories and allowed the Theoretical Domains Framework to be integral to the process (Table 1). Collection and analysis of data were iterative processes which allowed emerging themes to be further explored in subsequent interviews and focus groups.
A second member of the research team checked and confirmed coding of data. A third team member resolved any coding disagreements. The researchers' interpretation of the findings from the multiple data sources was presented and confirmed with the Study Steering Group.

| Patient health record review
There were 62 MET calls for 45 patients; 67% were for complex patients with comorbidities (categorized into pre-term and associated conditions, congenital cardiac disease, haematological illness or cancer, congenital syndrome, developmental delay, or respiratory disease

| Barriers and facilitators
Using the descriptors of each Theoretical Domains Framework domain, the key issues related to implementing C4H were classified and mapped to the following nine Theoretical Domains Framework domains.

| Knowledge
There was a low level of parent knowledge about the existence of the C4H process with most parents and children being unaware of C4H prior to the interview. Once informed, they all expressed positive views. Nearly, all staff knew of C4H prior to interview, but there TA B L E 1 Framework approach and data analysis steps Step 1 Preliminary analysis: The initial immersion in the raw data to become familiar with the diversity and range of the data while noting emerging and recurrent themes.
• Reading the transcripts of individual or focus group interviews.
• Making note of themes emerging from the data on initial reading in relation to the aims of the study.
Step 2 Establishing the thematic framework: The identification of a framework well suited to the examination and referencing of the data.
• The "a priori" identification of the TDF as an appropriate thematic framework with which to explore key behavioural constructs and context related to behaviour change. • Exploration of the data confirming the appropriateness of the framework to capture recurring themes and issues arising from the respondent's interviews.
Step 3 Indexing: The systematic application of the framework to the textual data.
• Identification of sections of relevant text within the transcripts, applying identifying codes and a descriptive label. • Preliminary sorting of text within a dedicated framework for each participant group.
Step 4 Charting: The creation of individual charts which capture data related to each of component of the framework.
• Combined nurses, doctors, MET responder, parent and children's data sorted into individual charts corresponding to 8 appropriate domains.
Step 5 Mapping and interpretation: The final stage of analysis undertaken to describe the phenomena in detail and review the salience of issues and dynamics operating within the practice context. was uncertainty that the process had actually commenced in the hospital and about their roles.

| Skills
All parents and children identified that parents had the skills to recognize what is not normal behaviour or appearance for their child.
Staff agreed that parents could recognize when their child deteriorated. Ward nurses were confident in their skills to be able to inform parents and all disagreed with the offer of developing a script (prepared wording) to assist them.

| Belief about consequences
There was agreement by all groups that the anticipated outcome from the C4H process will be to add value to patient safety monitoring and early recognition of clinical deterioration. In contrast, there was concern by all about the potential for inappropriate calls for other reasons.
This may result in overuse of resources, in particular an increase in the number of MET calls and the time costs for the ICU staff. In addition, staff, in particular ward nurses, described how they would be concerned about the potential professional repercussions if they had missed signs of clinical deterioration.

| Beliefs about capabilities
There was general acceptance that parents overall had the capability and confidence to take appropriate action to escalate care. Yet doubt was also expressed, with parents and staff providing examples from their own experiences.

| Social/professional role and identity
All parents reported they would take on the role to escalate care even if that resulted in upsetting hospital staff. Nurses considered that enabling parents to use the process of C4H was aligned with their family-centred care philosophy and practice. All participant groups identified C4H may have negative effects on parent-staff relationships. Further some ward nurses identified that C4H may be beneficial when their own attempts to escalate care were not acted upon. Overall staff were concerned that C4H may undermine professional boundaries, causing distrust and undermine the "system" of communication between parents and staff as well as between doctors and nurses.

| Memory, attention and decision processes
To receive information about C4H, parents recommended the use of multiple communication strategies, including methods to relay information before they arrived to hospital. Staff supported the need to inform parents prior to admission and were concerned about adding to parents' cognitive load at a time when they considered parents to already be experiencing high stress.

| Motivation and goals
In the situation when they were concerned about their child's deteriorating condition, parents described how they would always act in their child's best interest. This was identified by some parents as being a strong enough facilitator to enable them to speak up and question staff caring for their child. All groups agreed with the principle and intent of the C4H process.

| Environmental context and resources
All groups identified that a benefit of using the C4H was that the child will be reviewed by ICU staff, irrespective of whether or not that resulted in the patient being transferred to the ICU. Some parents rec-

| Behavioural regulation
The final C4H issue identified by parents and staff was that this process presented a challenge for parents to bypass the traditional hierarchy and culture in the health-care system. No alternatives to ways of working were identified.

| D ISCUSS I ON
Our findings describe the complexity of implementing an intervention that appears to be simple and shows how factors such as interpersonal communication, organizational hierarchy and culture or social codes of conduct can influence implementation. The key facilitator was that C4H was viewed as a positive step that could enhance patient safety. Key barriers identified were the low level of awareness by parents, lack of nursing and medical leadership support, concern about the potential increase in resource utilization, the potential negative effect on relationships, staff protecting parents from being overburdened with information and the challenge to the traditional hospital system culture. Implementation strategies can now be developed to target these barriers. There is increasing recognition about the complexity of this topic, and the need to understand which interventions are effective is now the subject of a Cochrane systematic review. 28 Major strengths of this study were the multiple sources of data to understand and explain the implementation issues from the perspectives of children, parents and staff. The audit findings conducted on two occasions after the initial introduction of C4H revealed an extremely low level of parent awareness. Knowing this information, it was interesting to identify through analysing patient records of MET call cases that there was parent involvement in escalation of care for 11/62 (17%) MET events. More specifically, there were five occasions when parent concern had actually been the trigger for nurses to place a MET call. These events/behaviours had occurred without parents being aware of the C4H process.
To understand why parents remained unaware of the C4H process and examine issues related to implementation, four children, leadership support, key to changing organizational behaviours. 29,30 All groups of participants expressed apprehension about the potential increase in the number of MET calls and subsequent impact on health services and use of resources. This had only been reported previously as a staff concern. 11 Other barriers to implementing a process for parent escalation of care included some that have been previously reported 9,10 and new knowledge about nurse behaviours in filtering information to avoid burdening parents. This resulted in C4H information not being prioritized when nurses provided information to parents. Difficulties in attempts to bypass the hierarchy and traditional culture in the hospital system are already well-recognized barriers to health professionals especially nurses effectively utilizing RRS, 31-34 but had not been previously reported in the context of parent involvement. This is an ironic finding given that the basis and impetus for implementing a process for parent escalation of care is to reduce the delays related to organizational hierarchical behaviours and poor health professional communication. 30,35,36 The study also revealed a number of facilitators. Limitations include the low level of parent awareness about C4H meant that no parent had knowingly utilized the C4H steps, nor had nurses or doctors been involved in responding to C4H to be able to provide feedback on their experiences. There was the possibility of missing data due to the retrospective record review data collection method. It may be that there was more parent involvement in escalation of care than had been documented. The convenience sampling of parent and child participants prevented data saturation being confirmed in those groups.

| CON CLUS ION
This study used multiple methods to evaluate the introduction of C4H, a process to enable parent escalation of care in a children's hospital setting. Although the concept was supported in principle by children, parents and health professionals, there was a low level of awareness about C4H in practice. Initial implementation strategies had primarily targeted policy change without taking into account the challenge to practise and organizational behaviour that C4H presents. Using a theoretical approach has enabled identification of the key human and system factors of lack of high-level management support and resourcing of the Rapid Response Systems and ineffective information sharing that influenced implementation to guide more targeted strategies.

ACK N OWLED G EM ENTS
We would like to thank all study participants, the Study Steering Group, Dr Geoff Knight, Nicole Pope and Dr Joanne Crittenden.