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, patientspecific 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.

Perceptions and experiences of older patients and healthcare professionals regarding shared decision-making in pulmonary rehabilitation: A qualitative study

“…17,19,20 Most of the studies have reported patients’ cognition of the disease and pulmonary rehabilitation, patients’ self-confidence, family, and social support as barriers to the implementation of pulmonary rehabilitation, but few have focused on the impact of the pulmonary rehabilitation decision-making process. Manhas et al 21 noted that facilitators and barriers of shared decision-making in community rehabilitation include provider characteristics, provider training, patients’ perceived assertiveness, lack of capacity, and patient-specific messaging, which are consistent with some of the findings of this study.…”

Implementation of EQ-5D-5L as a routine outcome measure in Community Outpatient and Specialized Rehabilitation Services

“…The R-MoC was implemented to cultivate a patient-focused and data-informed service model. Implementing the EQ-5D-5L as a PROM in a provincial context resulted in many learnings, both with the initial pilot implementation of the 18 early adopter teams, as well as the spread and scale to 152 urban and rural sites [ 11 ].…”

Measuring shared decision-making and collaborative goal setting in community rehabilitation: a focused ethnography using cross-sectional surveys in Canada

“…While this paper emphasises the survey findings, this paper is part of a broader study that included qualitative interviews, focus groups and patient-led data collection. 42 Together, this research programme followed an ethnographic methodology that underpinned its theoretical approach to data collection and analysis, which carried into this survey work equally. The surveys allowed a population-level perspective to inform the in-depth qualitative work.…”

“…This study complements another in this population that used qualitative interviews to explore SDM experiences. 42 The research team included two patient-coinvestigators who consulted on the research design, implementation and results dissemination.…”

“…Qualitative research by team members revealed challenges with a previously published SDM tool (SDM-Q-9) in primary care and mental health settings. 42 Challenges included inability to capture the SDM phase when problems are discussed and prioritised; the lack of a 'not applicable' option; an overemphasis on medical conditions; a lack of relevance for non-pharmacological interventions; and the lack of recognition that SDM is valuable in goal setting, investigations, as well as (as opposed to exclusively for) exploring treatment options. 43 In this context, the provincial health system sought to understand the experience of SDM and collaborative goal setting at diverse community rehabilitation sites across the province.…”