Appendix 1: Search Methodology and Results
A clinical librarian was consulted to assist in identifying MeSH terms and building the search strategies. A systematic search strategy (Table A) was used to search databases from 14 April 2016, with searches completed 23 April 2016. Reference lists of relevant articles and personal files were also searched to identify additional relevant citations.
Table A – Search Strategy to Identify Relevant Articles
Type of Database Database Search Fields Search Terms
Search 1 – Critical Care
MeSH Indexing EMBASE, MEDLINE, Title, abstract, key words
Patient participation;
Critical Care Non-MeSH
Indexing
PubMed Title, abstract, key words
Patient participation;
Critical Care Search 2 – Other vulnerable populations
Non-MeSH Indexing
PubMed Title, abstract, key words
Patient participation;
Organizational Models
The “participant” term yield was combined between-group with the “outcome” terms yields using the Boolean operator AND.
Eligibility Criteria
Inclusion: For both searches, citations were screened independently by two reviewers and studies were included that:
- Engaged patients and families
- And/or described a model of engagement
Specifically for Search 2 – studies were initially screened for investigating vulnerable populations and then searched according to criteria above.
Exclusion: Studies were excluded if they did not meet the definition of patient and
majority (two thirds) of users and perspectives gained were from clinicians/staff.
Studies were excluded where patient and family preferences for care or systems were sought. We did not believe these studies fitted the definition of “active partnership” and instead were more related to shared decision-making and patient and family-centred care, which are different concepts to engagement and partnership [1]. Case report, reviews, editorials, theses and descriptive commentaries were also excluded.
Study Selection
Two independent reviewers (K.J.H., E.H.S.) assessed titles and abstracts against eligibility criteria. Full text articles were sourced where the abstract contained insufficient information. Relevant full-text articles were retrieved and independently reviewed by both reviewers.
Data Extraction
A single reviewer (K.J.H) extracted data although the risk of bias was not assessed due to the limited nature of this review.
Results Critical care
The searches retrieved 1,830 citations with titles and abstracts screened for eligibility. Twenty-five full-text articles were reviewed. Four full-text articles were included.
Four studies met the inclusion criteria [21, 22, 24, 25]. Two studies were from the United Kingdom [21, 25], one from the United States and one from Sweden; all were qualitative in design. Half were in adult critical care [21, 25] and the other half in paediatric critical care [22, 24] with parents as the key stakeholder group. Generally, the populations studied included patients and families and clinicians although in one clinicians were over-represented at times [25].
Transactional
None of the included studies operated at this level of engagement.
Transitional
Two studies operated within transitional engagement, where families were more active in the partnership. For example, families provided user-perspectives to influence either direct care (e.g. family participation in paediatric ward rounds) [22]
or processes of care (e.g. methods of communicating discharge information) [21].
Engagement occurred through focus groups to understand what worked well, what did not and what needed to change. Both studies made content-specific recommendations (based on their context). Relevant themes, which may be applicable to patient and family engagement in other areas of critical care, include recommendations to:
- identify opportunities for patient and family education;
- ascertain patient and family’ preferences for information and level of involvement which may vary;
- communicate in language that is understandable to patients and families;
- maintain evaluation of engagement processes to ensure needs of both patients and families and clinicians are met;
- tailor information for patients and families and provide prompts for both to identify individual needs;
- acknowledge parents as experts who want the opportunity to advocate for their children (paediatric critical care).
Transformational
Two studies operated at this level of deep partnership. The first conducted experience-based co-design (EBCD) to improve care processes in neonatal care [24].
EBCD involves collaboration between patients and families and clinicians across four steps: capturing the experience, understanding the experience, improving the experience and measuring the experience [28, S1]. Key implications from this study’s EBCD approach included: significant differences existed between clinician and patient and family experience, patients and families were able to identify problems which
otherwise may have not been detected, collaboration with patients and families led to clinicians being able to address difficult improvement areas, patients and families felt empowered and the work gave them a sense of community [24]. Challenges included: clinicians tended to accomplish most improvements without the patients and families and only a small number of patients and families wanted to be involved [24].
The second study co-led a partnership between patients and families and clinicians to set national priorities for adult critical care research using modified consensus [25]. Engagement occurred through online and postal survey distributed through intensive care societies, speciality groups, patient and family committees and support groups and a workshop. Through this partnership key considerations were identified:
critical care patients and families are hard to reach and therefore difficult to ensure adequate representation across all project stages, patient and family groups may only represent a subset of the population, patients’ memory of intensive care is limited but experiences of recovery and rebuilding their lives after hospital are more relevant, families can recollect the ICU experience, representation of varied experiences across the ICU journey is needed from current and past patients and families [25].
Models of engagement in other vulnerable populations
The searches retrieved 571 citations with titles and abstracts screened for eligibility.
Twelve full-text were reviewed. Five full-text articles were included [1, 23, 26-28].
Four studies were from the United Kingdom [23, 26-28] and one from the United States [1]. The majority of studies described a model of engagement [1, 26, 28] and the empirical studies were qualitative in design [23, 27]. Three studies described a model applicable to any population [1, 28] although one was in the frail elderly [26];
and the two remaining studies included breast cancer patients [23, 27].
Three studies operated across multiple levels of engagement. One study [1]
proposed a generic model, operating across all three levels that included:
consultation, involvement, partnership and shared leadership to influence direct care, organizational design and governance, policy making. They noted moving across
the continuum toward partnership and shared leadership denotes an increasing level of engagement. Factors that may influence engagement are:
- patient and family (beliefs about patient and family role, health literacy, education)
- organization (policies and practices, culture) - society (social norms, regulations, policy)
One other study operated at all three levels by involving service users (frail elderly) in decision-making forums and implementation for a research trial [26]. This included strategic trial management and oversight, site management and implementation, local level involvement. The patients and families contributed insights to research tasks, which researchers would not have gained otherwise and their involvement model provided a framework for service user involvement in a multi-centre trial applicable to other studies. Key implications from this study include: service user involvement strengthens over time as relationships and knowledge grows and the time commitment can be burdensome for patients and families. Their recommendations include: prospectively recording and evaluating involvement processes in a trial to identify effective ways of sustaining collaboration and how this affects the research [26].
One study described a process across two levels of engagement, evaluating the effectiveness of capturing patient experience via two methods: focus group (transactional) and EBCD (transformational) [27]. This study recommended using an initial preliminary survey; with use of survey open comments, followed by an in- depth qualitative analysis to help deliver improvements to relational and functional aspects of patient experience [27].
Transactional
One study engaged patients and families within a transactional level through focus groups to ascertain the experiences and needs of breast cancer service users [23]. No model was offered but the benefit of qualitative focus groups over surveys was described as a useful way to capture user experience.
Transitional
None of the included studies operated at this level of engagement.
Transformational
One study described the process of EBCD and how it differs to other ways of involving patients and families in healthcare improvements [28]. The five key differences include:
- EBCD is a joint partnership between clinicians and patients and families working together as co-designers;
- the focus is on user experiences at a cognitive and emotional level and less about attitudes, needs or perceptions;
- the focus is on designing patient and family experiences not just processes, systems or built environment.
- understanding and accessing patient and family experiences is a learnt activity that requires practice
- understanding the interface between user and service (functionality, safety and usability)
Other partnership initiatives in critical care from grey literature
A search of the grey literature (primarily critical care organisations) was undertaken to identify other prominent examples of partnership initiatives. The following approach was used [S2]:
Key partnership initiatives from searching the grey literature are summarised in Table 4. Many of these initiatives operate across the spectrum of engagement and pave the way for innovation in critical care. A potential challenge is disseminating and raising awareness of this important work. Many achievements may not be captured in the academic literature but in grey literature including websites, social media, blogs and local hospital policies.
The current literature indicates a significant gap in patient and family engagement in critical care. Empirical research documenting a process of engagement, operating across the partnership continuum is clearly needed. Opportunity exists for those undertaking innovative work such as the THRIVE (Society of Critical Care Medicine) initiative, to design their work to publish and disseminate in the academic literature.
Appendix 2: Example organizational guideline on patient and family engagement
Critical Care Patient and family Engagement Guideline
Organisational header and guideline administration requirements Guideline number <<insert number>> Version <<insert number>>
Drafted by <<insert name>> Approved by <<insert date>>
Responsible person <<insert name>> Scheduled review date <<insert date>>
Communication strategy <<insert relevant>> Related Documents <<insert relevant>>
Introduction
<<insert organisation>>is committed to patient-centred care of the highest quality. Engaging
and partnering with patients and families in our organization can lead to improved quality and safety, enhanced accountability of the health service and positively influence an individual’s health outcomes. Within critical care there are varied opportunities to seek engagement of patients and families to better inform processes of care and improve service delivery.
Purpose
Patients and families may bring with them known deleterious psychological sequelae in the form of Post Intensive Care Syndrome. As such there is a risk that poorly designed patient and family engagement may be unproductive for patients, families and clinicians. To manage these risks, this guideline outlines a considered process for engagement under the following headings: What, Who, When, How.
Guideline What
Facilitating staff education and improving care are strong motivators for patients and families to share their stories of survivorship. There may be a number of local and international opportunities to engage and partner with patients and families. This may include but is not limited to:
- Speaking at local or international conferences - Speaking at and co-designing educational forums - Member of a quality or clinical governance committee - Co-design of research trials
- Co-design of hospital processes, systems, models of care and the built environment
Who
Patient and family engagement needs to address diversity and achieve authenticity.
Efforts should be made to avoid tokenistic engagement with patients and families to ensure a powerful and constructive voice is represented. A process to reach out to diverse patients and families is required and this may be as informal as approaching patients and families with a representative experience through to developing a more systematic approach to opt in or opt out according on participation needs.
Depending on the level of engagement and partnership required, it may be useful to involve more than one patient and family member to increase diversity of view.
When
When approaching a patient and family to seek their engagement, it needs to be done with sensitivity, allowing them the right to say no. Avoid approaching patients and families at a vulnerable time and respect individualized recovery to ensure their safety.
- Whilst there is no empirical evidence to support ideal timing for re-contact with patients and families contact needs to be done with sensitivity and respect for individualized recovery to ensure their safety.
How
The following suggested checklist can be used however, should not replace considered reasoning dependent on engagement required.
Making contact
o Make initial contact with patients and families a week prior to hospital discharge
o Re-contact post hospital via telephone (if staff known to patient and family) OR
o Re-contact via letter (if staff unknown to patient and family) with follow-up phone call
o Consider engaging more than one patient and family Timing of involvement
o Involve patients and families from commencement of project OR
o Involve patients and families similar to clinician experts, brought in for select high leverage needs
Meeting for the first time
o Provide an opportunity for patients and families to tell their story
o If unresolved issues from intensive care arise consider referral onto
o Ascertain how and where the patients and families involvement is best used o Be clear about the specific activities required
o Dependent on the activity, ensure the patient and family are supported through the process
Practicalities
o Scheduling project meetings or events when the patient and family is able to attend
o Reimburse patients and families for car-parking and/or travel costs
o If an event is for profit or not, if a clinician is being paid, so too should the patient and family
Emotional comfort
o Ask what the patient and family are most comfortable speaking about and gauge their response
o Consider the forum in which they are best suited to e.g. small group compared to large audience
o If speaking in a public forum, communicate the patients and families’ content preferences to the audience and facilitate the session to respect these boundaries
o Provide an opportunity to debrief following engagement Action and feedback
o Aim to act upon and link patients and families’ participation to outcomes o Ask patients and families what they consider a good outcome to be based on
their involvement
o Seek potential solutions from patients and families to enact change
o Provide feedback to patients and families regarding their involvement and ways they could improve
Authorisation
<<insert relevant>>
DISCLAIMER: <<insert relevant>>
SUPPLEMENTAL REFERENCES
S1. Maher L, Baxter H: Working in partnership with service users. Br J Healthc Manag 2009; 15:172–175
S2. Duffield A, Reid G, Walker D, et al: Review of the Published Literature for the Impact and Cost-Effectiveness of Six Nutrition Related Emergency Interventions.
2004. Available at: http://www.ennonline.net/reviewsixnutritioninterventions.
Accessed September 25, 2016
