Barriers to and facilitators of implementing shared decision making and decision support in a paediatric hospital: A descriptive study

Abstract

OBJECTIVE:

To explore multiple stakeholders’ perceived barriers to and facilitators of implementing shared decision making and decision support in a tertiary paediatric hospital.

METHODS:

An interpretive descriptive qualitative study was conducted using focus groups and interviews to examine senior hospital administrators’, clinicians’, parents’ and youths’ perceived barriers to and facilitators of shared decision making and decision support implementation. Data were analyzed using inductive thematic analysis.

RESULTS:

Fifty-seven stakeholders participated. Six barrier and facilitator themes emerged. The main barrier was gaps in stakeholders’ knowledge of shared decision making and decision support. Facilitators included compatibility between shared decision making and the hospital’s culture and ideal practices, perceptions of positive patient and family outcomes associated with shared decision making, and positive attitudes regarding shared decision making and decision support. However, youth attitudes regarding the necessity and usefulness of a decision support program were a barrier. Two themes were both a barrier and a facilitator. First, stakeholder groups were uncertain which clinical situations are suitable for shared decision making (eg, new diagnoses, chronic illnesses, complex decisions or urgent decisions). Second, the clinical process may be hindered if shared decision making and decision support decrease efficiency and workflow; however, shared decision making may reduce repeat visits and save time over the long term.

CONCLUSIONS:

Specific knowledge translation strategies that improve shared decision making knowledge and match specific barriers identified by each stakeholder group may be required to promote successful shared decision making and decision support implementation in the authors’ paediatric hospital.

Shared decision making (SDM) promotes partnership and communication between clinicians and patients regarding evidence, clinical experiences and patient preferences. Partners then deliberate to reach agreement about the best treatment plan (1,2). Achieving SDM in paediatrics involves partnerships among the clinicians, parents and the child (3). A recent systematic review reported that SDM interventions in paediatric practice improve knowledge and decrease decisional conflict (4). Although several leading paediatric regulatory organizations mandate SDM (5,6), implementation of SDM interventions in paediatric health care is limited (7–10).

To promote SDM at our paediatric hospital, we are implementing a hospital-wide decision support program for families and clinicians. Decision support is a form of clinical counselling to address decisional needs using evidenced-based tools and strategies (11). Patient decision aids are clinical tools that translate medical evidence into patient-friendly terms, and guide patients and families through an SDM process by making the decision explicit, providing information about the options, associated risks and benefits, and clarifying patient and family values and preferences (12). A Cochrane review of 115 trials reported that patient decision aids improve knowledge and realistic perceptions of benefits and harms, reduce decisional conflict and improve the match between patient’s informed values and chosen option (13). Decision coaching occurs when a trained clinician gives nondirective individualized decision support to patients and families (14). When decision coaching is combined with a patient decision aid, adult patients show improved decision-making participation and knowledge (15). Our hospital’s proposed decision support program aims to: make paediatric-relevant patient decision aids available to the public (http://www.cheo.on.ca/en/decisionaids); build clinician capacity to use decision support strategies within their clinical practice; and offer independent decision coaching services to patients and families.

Consideration of barriers and facilitators is among the most important elements for promoting program implementation in clinical practice (16). A Cochrane review reported that health interventions aligned with prospectively assessed contextual barriers and facilitators are more likely to improve professional practice (17). A systematic review found that barriers to and facilitators of knowledge use are among the best behaviour change predictors (18). Little is known, however, about barriers to and facilitators of implementing SDM and decision support in paediatric clinical practice. Accordingly, the aim of the present study was to explore multiple stakeholder perspectives of barriers to and facilitators of implementing SDM and decision support in our children’s hospital.

METHODS

Design

An interpretive descriptive qualitative study was conducted. This design aims to explore and develop new clinical knowledge by capturing themes, linkages and patterns from participant perceptions and experiences (19,20). The authors’ hospital’s research ethics board approved the present study (approval number 11/160x).

Setting and participants

The present study was conducted in a tertiary academic paediatric hospital with more than 2500 physicians, nurses and staff serving a population of approximately 600,000 children from newborns to 18 years of age. Four key stakeholder groups, whose endorsement of the decision support program were deemed critical for successful implementation, were purposefully sampled. Specifically, senior hospital administrators, clinicians, parents and youth were recruited. Eligible senior administrators, recruited by personal e-mail invitation, had portfolios related to patient quality and safety, patient and family centred care, or patient advocacy. Clinicians were employees or had practice privileges at the authors’ hospital and were recruited within groups identified as potential decision support program pilot sites. Parents were recruited from the hospital’s Family Advisory Council and youth from the Youth Advisory Council via e-mail request. The Family Advisory Council’s mandate is to share family perspectives with staff and board members, promote patient and family centred care, and advise on patient services. Family Advisory Council members are current and former parents/guardians of patients. The Youth Advisory Council’s mandate is to provide feedback, ideas and suggestions about the hospital’s programs, services and policies. Members include current and past hospital patients.

Data collection

Focus groups and interviews were used to collect data. Clinician groups and advisory council members participated in focus groups, scheduled during regular group meetings. Interviews were conducted in a hospital meeting room with senior hospital administrators and clinicians who could not attend the focus group. Data were collected from all eligible individuals willing to participate during the three-month data collection period.

Focus group participants were given a 15 min to 20 min PowerPoint (Microsoft Corporation, USA) presentation about child and family participation in health decision making, SDM concepts and approaches, and the decision support program and implementation plan. The presentation was adjusted for differences in health and research literacy (eg, medical terminology in the clinician presentation, lay terms for parent and youth presentations). Parents and youth completed a roleplay activity that involved working through a patient decision aid. Clinicians did not roleplay due to time constraints; however, the patient decision aid was reviewed. Interviewees were not given a PowerPoint presentation and did not roleplay; however, the same material was covered.

Semistructured interviews elicited stakeholders’ perceived SDM, and decision support barriers and facilitators. The interview goals included discussing participant views regarding: patient and family participation in health decision making; SDM and decision support; barriers to and facilitators of SDM and decision support; and interest in using the decision support program. A research assistant detailed participant responses in full-field note format (21).

Analysis

Field notes were analyzed using inductive thematic analysis (20,22). First, the researcher (LB) read the field notes in their entirety to gain a holistic sense of the data. During the second reading, the text was segmented to reflect important study information (eg, barriers and facilitators). Subsequently, two coders (LB and DM) independently examined the data and proposed a set of codes, which were finalized by consensus. Coders independently coded the data and then categorized recurring codes, codes that reflected underlying patterns or indicated importance for the participants, into themes. Supporting quotes were provided under each theme. Consistency between the coders was calculated using the following formula:

$$\frac{\text{number}\hspace{0.17em}\text{of}\hspace{0.17em}\text{agreements}}{(\text{total}\hspace{0.17em}\text{number}\hspace{0.17em}\text{of}\hspace{0.17em}\text{agreements}\hspace{0.17em}+\hspace{0.17em}\text{disagreements})}$$

Coder agreement was 81% and discrepancies were resolved by consensus.

RESULTS

Fifty-seven individuals representing four stakeholder groups participated in the present study. Five focus groups were conducted with the following stakeholders: social workers (n=13); nurses (n=5); multidisciplinary clinical unit including physicians, nurses and a social worker (n=13); parents (n=15); and youth (n=7). Youth were 12 to 18 years of age. Four interviews were conducted with senior hospital administrators (n=3) and a physician (n=1).

Barriers and facilitators

Six themes emerged and are summarized with supporting quotes in Table 1. One theme was a barrier, two were facilitators, and three were both barriers and facilitators. The most consistently and frequently reported barrier, reported by all stakeholder groups, was insufficient SDM and decision support knowledge. Although participants were familiar with the concept of patient and family engagement in health decision making, stakeholder groups reported limited, if any, previous knowledge of SDM terminology, approaches or decision support tools.

TABLE 1.

Summary of stakeholders’ perceived barriers and facilitators

Theme	Barrier (B)	Facilitator (F)	Senior Admin	Clinician	Parent	Youth	Supporting quotes
Stakeholders lack SDM and decision support knowledge	✓		B	B	B	B	“ML gave a [SDM] presentation last year and that was the first I had heard of it.” – Senior administrator “No, I have never been exposed to it [decision support].” – Clinician “[Decision support] seems like a good use of resources. As long as staff are aware that [it] exists.” – Clinician “No one had offered this type of model [SDM] or guidance [patient decision aid]. No one had dispensed this type of advice and we had asked for this exact type of help.” – Parent “[I] have never heard of it [SDM].” – Youth
SDM and decision support is compatible with the hospital’s organizational culture and practices		✓	F	F	F	F	“I am fully behind this [decision support program] and I think it is a necessary and important service for families.” – Senior administrator “I think this [decision support] program…is very patient-centred.” – Clinician “The fact that the institution strives for family-centred care - I think health care consumers and parents are always looking for the best information available and the best synthesis of information.” – Clinician “[Decision support] would come very naturally for us.” – Clinician “It [decision support] certainly fits with [our hospital’s] motto of family-centred care.” – Parent “This [SDM] is what happens in my doctor appointments anyway. They don’t just tell you what to do and walk away. I’m given choices and asked what I think.” – Youth
SDM and decision support will improve patient and family outcomes and/or experience		✓	NA	F	F	F	“I think partially informed decision making and paternalistic practice [are common]…seems like SDM would bring better balance to the decision.” – Clinician “[Decision support] allows families to take greater responsibility for the decisions made, thus potentiallyimproving adherence and self-management for chronic illness.” – Clinician “Decision coaching and working through the [patient decision aid] facilitates the conversation, helps families to articulate the benefits and harms, and arrive [at] a plan of action to obtain missing knowledge.” – Parent “If I’m intimidated I just listen and do what [the doctor] says. But if I feel comfortable I usually ask more questions.” – Youth
Stakeholders motivation and attitudes about decision support might impact uptake	✓	✓	F	F	F	B	“Attitudes that this [decision support] will help families [will promote implementation].” – Senior administrator “[Decision support] is very intuitive; buy in should not be that difficult.” – Senior administrator “…this [decision support] program sounds great.” – Clinician “I think partially informed decision making and paternalistic practice [are common] or in some ways where the patients feel the opposite and patients are weary of their health care professional because they have so much autonomy. Seems like shared decision making would bring better balance to the decision.” – Clinician “In our opinion, it [the decision support program] is an essential service and should be part of the care our children receive.” – Parent “We just go with what the doctor thinks. Why would we do something else?” – Youth
Uncertainty within and across stakeholder groups about the applicability of the decision support program for different clinical situations	✓	✓	F	F/B	F	F/B	“I really see a role for decision support and decision aids in palliative care, neuromuscular, and spina bifida.” – Senior administrator “[Decision support] would be more helpful for people with new diagnoses [compared to chronic conditions]… But some decisions can be life long and it depends where you are with the decision.” – Clinician “If an urgent decision is required and the parents are not present, they may not be involved in the decision process or we may not have time to explore the benefits and harms.” – Clinician “[Decision support is probably only useful for]… a big decision with lots of confusion around it.” – Youth
The decision support program must be integrated into clinics to promote workflow efficiency and ensure timely service delivery to families	✓	✓	B/F	B/F	F	NA	“I think a loose part it [sic] is families having to leave their appointment and then come back for a meeting with the [decision support] program. If I were the one with decision uncertainty I would want to deal with it immediately. I think you might lose families to this process.” – Senior administrator “As long as…decision coaches are there in a timely fashion. But if you get into a situation where you have a waitlist to see the decision coach as well as to see the specialist, it may not be practical.” – Clinician “I believe that the [decision support] may save time and reduce the number of consults in the long run.” – Clinician “The process of examining of what is important to a patient outside of the immediate pressure of having to make a decision in the encounter [is useful]. It gives patients a chance to reflect on their values in a structured way.” – Clinician “I like the idea that the coach is separate from the [health] team. It allows the family to have a couple degrees of separation.” – Parent

Admin Administrator; NA Not applicable; SDM Shared decision making

All stakeholder groups reported compatibility between SDM and decision support concepts with the hospital’s organizational culture, values and practice ideals as a facilitator to program implementation. Some clinicians indicated that SDM techniques were not a significant departure from their usual care and that decision support could complement their practice. After learning about SDM, one youth reported that SDM was already occurring in his clinical encounters – other youths agreed. All stakeholder groups suggested that SDM and decision support could improve patient and family outcomes and/or experience. Several clinicians reported that SDM represented a paradigm shift from paternalistic decision making and may improve patients’ medical self-management. The decision support program was viewed by parents as empowering patients and families to participate meaningfully in the decision-making process. Youth suggested that SDM approaches may reduce power asymmetries within the clinical consultation, making them feel more comfortable and increasing the likelihood of asking questions.

Stakeholder attitudes and motivation for SDM and decision support was a facilitator for senior administrators, clinicians and parents, but was a barrier for youth. On learning about SDM and decision support, senior administrators endorsed the decision support program, included program implementation in the hospital’s corporate objectives and agreed to ongoing collaboration for decision support implementation into clinical pathways. Most clinicians agreed that patient and family participation in decision making is a cornerstone of patient- and family centred care, and acknowledged that SDM is often lacking in paediatric practice. Several clinicians reported that SDM is well suited to paediatrics because it can support child participation at levels appropriate for their developmental stage. Parents unanimously agreed that patients and families should be involved in health decisions, supported the decision support program, and would either use and/or recommend the service. Several parents reported having unmet decisional needs during decision making about their child, and being unable to access the necessary support to make informed decisions consistent with their preferences and values. In contrast, several youth expressed ambivalent attitudes toward SDM and did not consider the decision support program a necessary service. For example, one youth was uncertain why a patient would not simply accept the physician’s preferred treatment option. When asked whether they would use or recommend the decision support program, the youth were slow to respond. One youth indicated that he may use or recommend the program if faced with a very complex decision. Some youth had difficulty articulating their preferred role in decision making.

Applicability of the decision support program for different clinical situations was reported as both a barrier and facilitator within and across stakeholder groups. For example, senior administrators identified specific clinical units that may be well suited for decision support techniques due to the complexity of the conditions and common preference-sensitive decisions that occur in those settings. Clinicians suggested that decision support may be more helpful for newly diagnosed patients compared with those with chronic conditions, but acknowledged that the health decision-making process often requires multiple decisions over time. Clinicians also stated that decision support may be difficult to administer when urgent medical care is required. Youth reported that SDM and decision support may be useful for difficult decisions that require consideration of multiple factors; however, they suggested it may not be necessary for simpler decisions.

Senior administrators, clinicians and parents believed the impact of the decision support program on the clinical process could be both a barrier and facilitator, depending on the context. For example, some senior administrators and clinicians indicated that additional appointments or wait times to see a decision coach may further stress clinical processes and resource utilization. Conversely, some clinicians posited that SDM and decision support would reduce repeat visits if patients and families were more informed and had less decisional conflict. Clinicians and parents appreciated that the decision support program offered patients and families a means to explore the decision away from the immediate health care team.

DISCUSSION

The present study prospectively explored multiple stakeholders’ perceived barriers to and facilitators of implementing SDM and decision support in a paediatric hospital. The primary barrier, indicated by all stakeholder groups, was lack of knowledge about SDM concepts, clinical tools and strategies. This modifiable barrier must be addressed before facilitators can promote decision support program implementation. For example, after certain stakeholders were informed about SDM and its benefits, several facilitators emerged that can be harnessed to promote implementation, including: SDM compatibility with hospital culture and practices; positive patient and family outcomes and experiences with SDM; and stakeholder attitudes and motivation for SDM and decision support. Additionally, some stakeholders had difficulty identifying clinical situations that were and were not well suited to decision support. These findings are consistent with a systematic review examining implementation of SDM in adult practice, which identified lack of SDM knowledge and applicability due to the clinical situation as barriers, while compatibility, attitudes and positive patient outcomes were facilitators (23). To address these barriers and facilitators in promoting SDM implementation, we are providing an evidence-based online SDM tutorial (https://decisionaid.ohri.ca/training.html) and interactive decision-support skill-building workshops to all interested clinicians in our institution.

Youth’s attitude about SDM and decision support was an unexpected barrier. Youth seemed not to appreciate the value of a decision support program and expressed satisfaction with their current decision-making involvement, even if the decision was made for them. Similarly, a study examining human papillomavirus vaccination decision making between youth-clinician-mother triads found that youth were passive in decision making, and were satisfied with their role (24). In contrast, reviews show that youth often feel marginalized during health decision making and want an active role (9,25). Notably, our youth sample expressed conflicting views about SDM. For example, they reported that SDM may reduce power asymmetries and improve involvement; on the other hand, however, they considered it acceptable for a physician to make a decision on their behalf. This may reflect an incomplete understanding of SDM and decision support. Because youth’s attitudes and motivation for SDM and decision support were less positive than for other stakeholders, this group may require population-specific knowledge translation strategies to promote SDM implementation. For example, in partnership with youth, we will develop and evaluate a decision support tablet/smartphone application to improve youth’s SDM understanding and applied use.

Several study limitations should be addressed. The present study was conducted to inform implementation of a specific decision-support program at a single centre, and may not be generalizable to other SDM interventions or sites. Participants were purposefully sampled and many had patient advocacy roles that aligned with our study, thus potentially biasing their views. Furthermore, we did not control for data saturation, use audio recordings, or validate results with member checking due to resource constraints and the exploratory nature of the present study. We noted that the views of opinion leaders within the youth focus group may have biased other’s opinions or limited their willingness to contribute to the conversation. Similar studies may consider using an interview approach with youth to gain a fuller understanding of their views in the absence of influence from peers. Nevertheless, this work provides a basis for future research examining paediatric SDM barriers and facilitators, and selecting knowledge translation strategies to promote SDM in paediatrics.

CONCLUSION

Conducting a barrier and facilitator assessment to elicit stakeholders’ perspectives prior to implementation was valuable for improving SDM and decision support awareness at our hospital, adapting our decision support program to minimize barriers, and selecting knowledge translation strategies tailored to the perceived barriers and facilitators of various stakeholder types to promote implementation. More research is needed to deepen our understanding of factors that influence the implementation of SDM and decision support in pediatric clinical practice and to determine which knowledge translation strategies are most effective for particular stakeholder groups and clinical settings.