Experiences of shared decision-making in community rehabilitation: a focused ethnography

Abstract

Background

Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM.

Methods

We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences (n = 23 patients; n = 26 providers).

Results

We found SDM experiences fluctuated between extremes: Getting Patient Buy-In and Aligning Expectations. The former is provider-driven, prescriptive and less flexible; the latter is collaborative, inquisitive and empowering. In Aligning Expectations, patients and providers express humility and openness, communicate in the language of ask and listen, and view education as empowering. Patients and providers described barriers and facilitators to SDM in community rehabilitation. Facilitators included geography influencing context and connections; consistent, patient-specific messaging; patient lifestyle, capacity and perceived outlook; provider confidence, experience and perceived independence; provider training; and perceptions of more time (and control over time) for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient’s perceived assertiveness, lack of capacity, and level of deference.

Conclusions

We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care.

Background

Globally, nationally and provincially, health-systems and research-funders aim to promote patient-centred care [1,2,3]. Patient-centered care is defined as respectful, responsive care that incorporates patient needs and values [4]. Shared decision-making (SDM) is an interpersonal process where provider(s) and patient collaborate to make decisions using best available evidence as well as patient preferences and lived experience [2,3,4,5,6,7,8,9,10]. Both patient-centered care and SDM are integral components of enhanced patient experience.

Research suggests that SDM advances patient knowledge and satisfaction [11,12,13], promotes the attainment of treatment goals [14], reduces inappropriate service utilization [15], and improves patient-reported outcomes [11, 16]. SDM is not routinely used or taught in healthcare [17,18,19]. Systematic reviews (professionals (n = 38 [18], n = 20 [20] studies), and patients (n = 44 [21] studies)) suggest that SDM barriers include time-related barriers, organizational facets (e.g. lack of recognition and reimbursement), traits of the interaction (e.g. power imbalance), and patient characteristics (e.g. lack agreement) [18, 20, 21]. SDM facilitators include attitudes, patient preferences, and level of innovation [18].

The extant SDM literature emphasizes patient-physician interactions. Little research exists on the experience and impacts of SDM amongst other professionals, teams and organizations [22]; and on SDM in rehabilitation involving primarily allied-health providers [23]. A narrative synthesis (n = 15 studies) revealed that in-patient rehabilitation goal-setting did not permit patient input, was overly-controlled by staff, was challenging for time and patient-load reasons, and involved parties lacking SDM knowledge [23]. Five further studies evaluated a “train-the-trainer” program to promote SDM in inpatient rehabilitation using focus groups, surveys and a cluster-randomized controlled study, but did not fully elaborate the SDM experience in rehabilitation [24,25,26,27,28]. Other research theorizes on SDM in rehabilitation, positing on technology, ethics and collaboration [29,30,31,32,33]. Study transferability to community contexts is unclear [23]. Inpatient and outpatient needs and resources vary, impacting communication [34, 35]. More research is required to better understand the barriers and facilitators to SDM in a rehabilitation context, particularly because rehabilitation supports both acute and chronic care. This better understanding is timely, relevant and important.

In this study, we aimed to address this gap in understanding the experience of SDM in community rehabilitation. We sought to understand what patients and providers from diverse community-rehabilitation sites across one Canadian province perceived as the SDM experience, its barriers and facilitators. We conducted a feasibility study with two community-rehabilitation sites, wherein strategies were developed to address site and participant burden; to promote recruitment success; and, to confirm the appropriateness of data collection techniques.

Methods

Using focused ethnography, we studied patients and professionals composing diverse outpatient rehabilitation sites across a Canadian province (population 4 million people), whether hospital- or community- based. We used multiple data collection techniques including prospective surveys and informant interviews; we discuss the qualitative findings here only. The research team initially reflexively noted their own assumptions, which included beliefs that SDM results in better outcomes, that micro-, meso- and macro- level factors influenced SDM; and that this research is “real-world.” Recognition of these beliefs led to emphasis on audit trail and study limitation discussions; asking providers questions about team (meso) and organizational (macro) factors as well as the patient-provider interaction (micro); and, ensuring the methods were feasible for sites to implement, respectively.

To ensure breadth and relevance, rehabilitation clinics from the single provincial health-system and private-provider sites were included. Geographical diversity was ensured by including sites from from rural areas (population < 10,000), regional-urban areas (population between 10,000 and 100,000), and metropolitan-urban areas (where population > 100,000). This study was approved by the Conjoint Health Research Ethics Board (University of Calgary).

Participants included current patients and providers visiting and working, respectively, at study sites. Provider inclusion criterion was employment at the site. There was no limit on type of healthcare provider discipline. Patient inclusion criteria included ≥18 years of age; their rehabilitation provider was participating; able to consent without proxy; and can understand and speak English. These criteria were driven by ethical and feasibility concerns. There were no exclusion criteria.

Convenience sampling, informed by site leadership, directed provider recruitment. Tactics included researcher’s email introductions followed by study presentations (by webinar, in-person, or one-on-one) overviewing study aims, methods and implications. Informed consent was obtained. Recruitment continued to saturation for providers per geographical area as feasible.

Convenience sampling directed patient recruitment. Trained, onsite receptionists or therapy assistants identified and recruited eligible patients, who then expressed interest in interview participation directly to researchers. Only patients of included providers were included to promote triangulation on the same patient-provider encounter from diverse perspectives and to minimize site burden. Recruitment continued to saturation for patients per geographical area as feasible.

We used unstructured, guided interviews to clarify communication experiences during appointments (supplemental file) [36,37,38]. We ask participants to describe appointments that went well and that did not go well, communication wise; providers were also asked to describe training they found to be influential to their work or any organizational or site traits that influenced them. The lead researcher (KPM), a researcher with legal and bioethics training alongside post-doctoral experience in qualitative research conducted all 1:1 interviews by phone or in-person, based on feasibility and participant preference. She had no previous relationship with participants. Interviews were audio-recorded and transcribed.

Data collection and analysis was simultaneous. Analysis began by uploading cleaned transcripts into NVivo. The lead researcher coded transcripts for words and phrases related to barriers to, and facilitators of, SDM. Similar ideas were grouped together to form themes, with tentative relationships among the themes identified. Using participant type and geographical area, the lead researcher separately analyzed six groups of transcripts. The three patient groups from each geographical area were incorporated into a larger patient-specific model. The same was done for provider insights. Patient and provider models together built the full framework.

We promoted the research rigour through several tactics [36]. Credibility was established through peer debriefing, member checking, and negative case analysis. We shared interim findings with organizational leadership, patient advisors and knowledge users to ensure resonance. During data collection and analysis, we consciously sought data supporting alternative explanations so that initially identified researcher assumptions did not direct results (i.e. were there other connections between SDM and outcomes) [36]. This study was preceded by a feasibility study; we had more than 1 year of connection with sites and leadership. This fostered engagement, trust and rapport. Transferability was addressed through use of thick description from interview transcripts and field notes to ensure contextualization.

Confirmability was achieved through use of audit trail, triangulation and reflexivity. The audit trail included raw data, data-analysis documents, and final deliverables. This audit trail yielded a clear research path examinable by the research team. Collecting data from a diverse sample of patients and providers from three geographical areas permitted triangulation, particularly our iterative levels of saturation. Reflexivity was promoted in team meetings with researchers briefly summarizing their personal learning as the study progressed. To ensure transparency, we exposed pre-existing, researcher perspectives in the proposal and field notes to promote team discussion [36, 39]. Finally, dependability was established through the availability of the audit trail to team members including a knowledge-user for assessment, to root out errors [36, 39].

Results

We conducted 49 one-on-one interviews: 23 with patients, 26 with providers (duration 15 to 60 min each). Participants were recruited from 14 community-rehabilitation sites, three of which were private providers and 11 were from the single provincial health system. Geographically, three sites represented rural areas (n = 8 patients, n = 5 providers); five represented regional-urban sites (n = 10 patients; n = 8 providers); and six represented metropolitan-urban sites (n = 8 patients; n = 10 providers). The proportion of female participants was similar for patients (73.1%) and providers (73.9%). All but one patient participant visited rehabilitation for chronic conditions. Most of the provider-participants practiced physical therapy (47.8%) or occupational therapy (30.4%). The findings from the six sub-groups were brought together to develop an overarching framework to explore SDM experiences, as well as patient- and provider- perceived barriers and facilitators.

The Spectrum of SDM Experiences in Community Rehabilitation.

At these provincially-dispersed community-rehabilitation sites, SDM is present, but inconsistent in its appearance. SDM experiences appear to fall along a continuum anchored by two approaches: Getting Patient Buy-In and Aligning Expectations (Fig. 1). The former lacks flexibility, is provider-driven, and is prescriptive. The latter is collaborative, inquisitive and empowering. Aligning-Expectations contains the features of high-quality SDM.

Fig. 1

The Spectrum of SDM Experiences in Usual Care Community Rehabilitation

In Getting-Patient-Buy-In, providers generally dominate and direct conversations, goals, and planning. Patients are less involved. The aim of interactions is patient adherence to provider-driven goals and plans.

“I probably end up going into paternalistic mode because at the end of the day you’re like ‘well okay that’s the direction we’ll take it then if you’re not [sic] making any decisions.’” [Rural Provider 1, Female]

“I guess at this point I think I know what’s best for people but I always try to ask if we’re missing something. … I tell them you’ve got to let me know if this is not enough or too much or whatever it may be.” [Regional-Urban Provider 4, Male]

“I’m kind of a follower. I go along with what the treatment is. Yeah everywhere, I kind of trust the health providers.” [Metropolitan-Urban Patient 1, Male]

In interactions that reflect Aligning-Expectations, communication is active, two-way, and mutually respectful. Patients and providers detail their rehabilitation wants and needs candidly towards clear goals.

“Well pretty much my goals are based [on] what their goals are. … I kind of tell them this is what we’re going to do to help achieve that goal and kind of what we’re doing [and] kind of my goal.” [Regional-Urban Provider 2, Female]

“Shared decision-making. This is what they’ve done. They said ‘Okay here’s the test. Let’s just try this, let’s just try this.’ Because for me, they had to prove to me that I wasn’t ready. And so because they proved to me that I wasn’t ready, I was motivated to become more ready.” [Rural Patient 2, Female]

Three underlying dynamic tensions constitute each anchoring approach: (1) to presuppose versus to explore; (2) the language of tell and do versus the language of ask and listen; and (3) explanation versus education. Table 1 elaborates the facets of each tension, while Table 2 provides quotes supporting the tension. The interplay of these (not mutually-exclusive) tensions informed where an interaction fell on the SDM spectrum. An individual provider or patient was not wholly limited to one ‘spot’ on the spectrum (e.g. a single provider described an experience of telling the patient what to do, and another experience of approaching patients humbly).

Table 1 Tensions Underlying SDM Experiences in Community Rehabilitation

Table 2 Transcript Quotes Demonstrating the Underlying Tensions to the Extremes of SDM Experience in Community Rehabilitation

The tension between presupposition and exploration turned on how open, collaborative and confident the patient and provider were with each other.

To Presuppose

“Another really good one is almost like fortune-telling sometimes because they’ll tell you symptoms and then you can always already jump into other symptoms … they did not mention. … So they know what I’m talking about and they understand me and they trust my expertise.” [Metropolitan-Urban Provider 3, Female]

To Explore

“When I first started out, there would be a lot of me sort of being in my own head a lot and making sure I’m prepared, making sure I’m saying the right things, making sure you’ve done your research ahead of time. … But what I [sic] think has changed, and gradual more than anything, but it’s that just kind of being more in the moment and trying not to come up with what I’m going to do or say ahead of time and having [a] more organic sort of growth together.” [Rural Provider 4, Male]

The tension around language turned upon whether the language used was uni-directional (where information flows in one direction) or bi-directional (where both patient and provider communicate effectively by sharing with, and hearing, each other).

Tell/Do

“”[T]hey didn’t understand my reality. So I have nurses that come and dress me everyday. … If you take that shoe off of me, that’s fine. But then I need someone to put it back on me. So I mean it’s not their fault they would not have an idea of what my actual life is like.” [Regional-Urban Patient 7, Female]

Ask/Listen

“I need to understand what their concerns are and the goals and how we both will get there. And from my part, I need to listen and break it down and from their part is they need to follow-up with the exercises and or treatment implementation that I set so then we can talk about it together if that works for them. And sometimes it doesn’t.” [Regional-Urban Provider 5, Female]

The manner and purpose of information sharing could empower the patient or provider alone (explanation), or both patient and provider (education). Explanatory information-sharing featured permission-securing purposes; incomplete understanding; and, lacked clarification of understanding. Educational information-sharing enabled patients and providers to clarify each other’s perspectives, expectations and preferences.

Explanation

“If you’re going in for surgery, you don’t understand the surgical risks and what’s going to happen. You could be told but you still don’t really understand. So you want the surgeon who is the expert to tell you this is what you need, this is what we’re going to do. And that’s how I approach it here, I give them options but I tell them this is the best.” [Male, Provider 2, Metropolitan-Urban].

“Sometimes I thought that they were understanding what I was saying whereas sometimes they’re not. They didn’t understand everything fully and you don’t know that sometimes until they come back. And you have to re-explain the diagnosis. Or if it’s an exercise you want them to do, you have to show them again they didn’t quite understand it the first time so it would maybe communication where I hadn’t been as clear as I thought.” [Rural Provider 3, Male]

Education

“Information. So in my opinion, people tend to not do enough or they overdo it. And so they give you guidelines to follow and that really helped stay within the parameters of being healthy.” [Regional-Urban Patient 3, Female]

“There’s been a couple time where not too much was happening for a while. So, I said to the doctor, “I feel like things aren’t really moving ahead like I thought they were”. Then he’s explain to me why right now were trying to open things up, because right now you’re all hunched over so we need to open that up. And then when we progress to the next level, the strengthening will start improving things. And I guess I was okay with it. I didn’t need to see improvement every single time.” [Metropolitan-Urban Patient 6, Female]

Perceived barriers and facilitators to SDM

Patients and providers revealed factors that manifest as barriers or facilitators to the SDM experience in community rehabilitation (Fig. 2). These factors influenced how the underlying dynamic tensions manifest, and correspondingly where on the SDM spectrum a patient-provider interaction would fall. Tables 3 and 4 describe the SDM barriers and facilitators perceived by providers and patients, respectively. These tables contain a quote to exemplify the influential factor (Supplemental Tables 1 and 2 contain detailed quotes).

Fig. 2

Barriers and Facilitators to the Experience of SDM in Community Rehabilitation

Table 3 Provider-Perceived Barriers and Facilitators in SDM in Community Rehabilitation as well as Exemplar Quotes

Table 4 Patient-Perceived Barriers and Facilitators in SDM in Community Rehabilitation

Patients and providers had six factors in common: geography, messaging, organization, patient characteristics, provider characteristics, and time. Providers recognized two further factors: appointment types and training. Patients recognized two unique factors: choices as well as power and deference.

While details are in Tables 3 and 4, we elaborate a few factors to clarify their dual manifestations. For example, geography could facilitate SDM because smaller communities were attributed with fewer competitors for provider time and attention during appointments and with longer, trusting relationships. Geography could sometimes impede SDM because smaller communities were associated with fewer choices for some patients and more physical distance to travel for rehabilitation supports, which was challenging when people faced physical health issues. However, where there was confidence and trust in SDM, patients often did not seek alternatives.

“Because of where we are and the people we serve, both because of distance or because of people are back in the workforce and can’t come once a week for six weeks, so then we adapt that program a lot. We have that discussion about ‘does this work for you?’ [Regional-Urban Provider 7, Female]

“That’s one real advantage of [Town 3] is that he is it. And there’s next to nothing else going on. There’s no other distractions. He’s focusing entirely on you. … He takes his time.” [Rural Patient 4, Male]

Another example includes time. Time facilitated SDM when providers gathered experience and confidence in their professional skills and spent more time with patients to build trust. Time impeded SDM when patients were unsatisfied with the ratio of physical progress to time receiving rehabilitation services or when patients or providers perceived less time available during appointments.

“Pain relief motivates me and being able to do the things [that] I like to do without having any issues and driven by results. So when I see results from their actions as well as my actions, then of course that builds trust and motivation to continue working with the practitioner.” [Metropolitan-Urban Patient 5, Female]

A third example includes messaging. Patients and providers appreciated clarity, specificity and remembrance in their communication. They felt that fostered better quality SDM. Use of visuals, clear language, and simple strategies that were tied to the patient’s previously-described circumstances, needs and wishes were of great value.

“Depending on what part they’re not understanding, I’ll use different things. I use visual tools. I use models. I use pictures. I use analogies. I use descriptions. I’ve got an arsenal of them from over the years from how I describe things. If they’re a mechanic, I’ll compare it to a car. … If they’re a baker, I’ll compare it to not having the right ingredients.” [Rural Provider 5, Female]

Discussion

The perceptions of SDM of patients and providers in this study reveal that explanations of SDM could be described as falling along a continuum, where high-quality SDM in community rehabilitation involves active, two-way, mutually-respectful communication. Patients and providers perceived many similar barriers and facilitators to SDM in community rehabilitation. Our findings correspond to, and expand beyond, the scant literature from the rehabilitation context [24,25,26, 40, 41]. Previous literature reviews suggest very negative and limited SDM experiences in rehabilitation. In contrast, we demonstrate positive examples, and the factors promoting them across diverse settings.

There is overlap between the perceptions of community-rehabilitation patient of SDM barriers and those of patients from physician-focused encounters. A systematic review (n = 44 studies from mostly physician-patient encounters) demonstrated patient-reported SDM barriers fell into two groups: health-system organization and decision-making interaction [21]. Organizational barriers included time, continuity, workflow, and setting characteristics, while interactional barriers included pre-disposing factors, decision characteristics, interactional factors, power imbalance, presumptions regarding patient role, patients undervaluing themselves, communication style, trust, and preparation [21]. Our findings confirm that the nature of communicators, the message, and their setting are influential and important to the SDM encounter experience.

Many factors that could enable or impede SDM were perceived in common between patients and providers in this study. Their divergences are telling, but are rooted in power dynamics. For patients, power imbalances, and correspondingly deference, in favour of professionals, influenced perceived SDM quality and patient engagement. For providers, power-related dynamics also seemed at play. Here, power favoured organizations and other professionals (particularly physicians). Appointment types included power dynamics either because organizational infrastructure dictated the time available to an appointment or physicians had more control over the content, planning and communication of certain rehabilitation (e.g. post-hand surgery). Training involves education and information, which is often touted as a great equalizer in power imbalances. Providers appeared to recognize that as well.

Six actionable items emerged to promote more experiences of Aligning-Expectation in community rehabilitation. First, provider training, especially particular training on patient-centred care and behavior change (i.e. HealthChange® Methodology [42]), are associated with better-quality SDM encounters involving exploration (not presupposition), listening (not telling), and education (not explanation). Many providers mentioned that the tactics from the patient-centred care workshops influenced their patient interactions. This identifies an alternative, more impactful training process versus the train-the-trainer SDM-development activities completed previously in Europe [25, 26].

Second, further educational strategies should be developed and tailored to address provider-perceived factors related to patient and provider characteristics. For example, training can give providers strategies and tools to overcome barriers associated with patient attributes (e.g. patients lacking active lifestyle, lacking assertiveness, and being overly deferent to providers). Training can compensate for provider traits manifest as barriers (e.g. lack of experience, lack of confidence, or lack of humility). Patients may not be as fully forthcoming due to their deference to providers and the health system and that patients may have plans of their own. Training that helps providers make space for patients to share could promote patient candour around preferences and plans. Training alone is insufficient; sustainability post-training is critical. Training should support the establishment of communities of practice, where providers continue to share their SDM stories, successes and challenges to enhance teamwork around a common theme across the system and to promote and sustain SDM training and skills in a variety of settings and with variations in patient characteristics.

Third, patients and providers were clear on the nature of messaging required in information sharing attuned to Aligning Expectations: clear, simple, patient-specific language with temporal consistency and connections to previous conversations between patients, providers and the health system. Humble, open communication works well. Open communication is not open-ended; patients seem to want specificity and continuity in conversations. A broad open-ended question sometimes works against the provider, as it suggests a lack of remembrance.

Fourth, our research clearly demonstrates that both patients and providers have expectations for the rehabilitation journey. Honesty and candour about expectations help patients and providers have collaborative experiences that support patients in setting and meeting their personal rehabilitation goals. Laying out expectations as the relationship unfolds breeds transparency and eventually alignment, satisfaction and patient-centredness.

Fifth, lack of time manifests as a barrier, while perceived adequacy of time was a facilitator. These findings corroborate but expand previous findings related to SDM barriers in physician contexts [18, 20, 21]. The broader literature suggests that the critical aspect is the non-quantifiable facets of time (e.g. caring, not rushing, active listening and trust) rather than the solely quantitative measure of amount of time spent [43,44,45,46]. Many providers spoke of feeling in control over their time and being free to spend time after patient-centred care training [42], but did not explicitly describe appointment times being lengthened. Further exploration on variability in perceived adequacy of time may be required, as it may be that more meaningful dialogue occurs in the same (or less) time if providers are taught to enhance SDM. Policy tools should be assessed that could empower non-rural providers to feel independent and in-control of their schedules and appointment spacing as their rural counterparts do. Those feelings seem to transfer to patients and help both patient and provider have a non-rushed conversation. In this setting, developing a community of practice again has value to transcend rehabilitation settings while empowering providers.

Sixth, broader policy changes may be needed for other identified, influential factors. For example, using technology to promote choices for patients and providers in geographically-remote areas may overcome geographical barriers. But, this study indicates that when care is collaborative, patients do not seek out alternative choices and relish the unique features of the sole choice in their community. Also, there is a need to explore how humility, collaboration, education and the language of ask and listen can follow patients and providers through different appointment types beyond traditional 1:1 appointments. There is a trend towards more efficient use of group-based programming in community rehabilitation. Further strategies and subsidies may be needed to redress waitlists and financial barriers that limit patients’ abilities to attend rehabilitation on a timely basis.

Limitations

We recognize limits of this study. First, there may be a selection bias and non-response bias. Perhaps only patients with an extreme experience (either good or bad) were interested in sharing their experience with the study, so they would differ markedly from the general patient-population experience. It was unlikely, given the difficulty in patient recruitment generally, to recruit non-responders to participate in a non-responder interview or survey. This study prioritized significant recruitment using convenience sampling to lessen the influence of these biases.

Second, there may have been a Hawthorne effect on providers wherein their knowledge of a study assessing their communication altered their communicative behaviours. Due to the importance of informed consent, this effect could not be avoided. All site providers were informed about the study and its focus on communication prior to recruitment. In Phase 1, it appeared that rehabilitation professionals were accustomed to being observed during practice given their own training, the multidisciplinary players, and trainee presence at many sites. One patient-participant in this study noted a marked difference in her provider’s communication style that felt connected to study participation. This seemed isolated and was not replicated by other patient-participants.

Third, while our sample was geographically diverse, involved different rehabilitation professional disciplines, and patients with diverse conditions requiring rehabilitation, we lacked representation from diverse ethnicities and cultures. This limitation was compounded due to lack of interpretation services. Future research in settings that care for diverse patients from different cultures and ethnicities would be valuable. Finally, we did not have access to full peer review of all interview transcripts. Patient co-investigators (JM, ST) independently transcribed a sub-set of transcripts, which led to a discussion on themes and relationships with the lead researcher (KPM) who coded all transcripts. Availability and costs prohibited more in-depth and independent second assessments on coding. Many other tactics were used to promote rigour including audit trail, thick description, and negative case analysis.

Conclusions

We have found both positive and less-than-ideal experiences of SDM in community rehabilitation. Many distinct, but not mutually-exclusive, factors influence where a SDM experience falls along between two extremes. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers.