Shared decision-making is increasingly advocated as an ideal model of treatment decision-making in the medical encounter. To date, the concept has been rather poorly and loosely defined. This paper attempts to provide greater conceptual clarity about shared treatment decision-making, identify some key characteristics of this model, and discuss measurement issues. The particular decision-making context that we focus on is potentially life threatening illnesses, where there are important decisions to be made at key points in the disease process, and several treatment options exist with different possible outcomes and substantial uncertainty. We suggest as key characteristics of shared decision-making (1) that at least two participants-physician and patient be involved; (2) that both parties share information; (3) that both parties take steps to build a consensus about the preferred treatment; and (4) that an agreement is reached on the treatment to implement. Some challenges to measuring shared decision-making are discussed as well as potential benefits of a shared decision-making model for both physicians and patients.

Shared Decision-making in the Medical Encounter: What Does It Mean? (Or, It Takes at Least Two to Tango)

Assumptions are our taken for granted interpretation of the world. They are identified as important in reasoning, sense making, behaviour and action. Anecdotal evidence from users of neurological rehabilitation services suggest that assumptions influence how they are perceived and related to, impacting on their experiences of inclusion. This study investigates the assumptions held by service users and staff about neurological rehabilitation, examines their influence on inclusion and explores the conditions influencing change in assumptions.

This doctoral study drew largely on data generated as part of a funded research project, which investigated perceptions of inclusion and inclusive practice in neurological rehabilitation. Both the funded research project and this study adopted a participatory action research approach, using photography, mapping, diaries, interviews and focus groups to generate data. Additional data was generated for this doctoral study through a workshop and reflective questionnaire which focussed specifically on assumptions. Data analysis and sense making used framework analysis and a thematic approach. Research participants and critical friends contributed to validation of findings.

The findings identified that assumptions do form the basis for interactions and practices that influence whether neurological rehabilitation is inclusive and/or effective. Addressing assumptions requires that specific attention and scrutiny are given to situations where taken for granted thought has been disrupted, therefore, creating opportunities for critical dialogue and new understanding to be developed. Importantly, when service users and staff work collaboratively to ask the question “how do we do this together” assumptions of role, knowledge and expertise can be challenged and inclusion facilitated.

The study recognises that addressing assumptions in practice requires a change in the way of working in neurological rehabilitation. A re-framing of practice is called for and a critical relational ontology proposed to replace the currently advocated person centred approach, with the acknowledgement that this is likely to radically challenge current principles and practices in neurological rehabilitation.

Investigating service user and staff assumptions about neurological rehabilitation practice, their influence on inclusion and examining conditions for change

Menschen, die unter chronischen Einschrankungen leiden, sind dauerhaft auf die Unterstutzung von Gesundheitsdiensten und sozialen Pflege- bzw. Gemeinschaftsdiensten angewiesen. In Grosbritannien hat das Department of Health die Erarbeitung inklusiver Ansatze vorgeschlagen, um sowohl den Betroffenen besser helfen als auch finanzielle Einsparungen aufseiten der Dienstleistungserbringer sicherstellen zu konnen. Vor diesem Hintergrund wurden Personen mit unterschiedlicher Gruppenzugehorigkeit (Nutzer/innen neuro-rehabilitativer Dienstleitungen, Dienstleistungsanbieter/innen, Personen, die in weiteren Unterstutzungsdiensten tatig sind sowie universitare Forscher/innen) zur Teilnahme in einem partizipativen Forschungsprojekt eingeladen, um gemeinsam herauszufinden, was Inklusion fur Menschen bedeuten konnte, die dauerhaft Gesundheitsdienste in Anspruch nehmen mussen. Die folgenden Prozesse liefen herkommlichen Vorstellungen von Inklusion und inklusiver Praxis tlw. zuwider: Es wurde deutlich, dass oft diskutierte Elemente wie Vertrauen, Respekt und geteilte Verantwortung fur eine inklusive Praxis zwar erforderlich, aber nicht ausreichend sind. Inklusion ist vielmehr ein komplexer und herausfordernder Prozess, der der aktiven Konstruktion und Bereitstellung kritischer Kommunikationsraume bedarf mit dem Ziel einer wechselseitigen und demokratischen Konzeption von Unterstutzungsleistungen.

/pdf/participatory-research-into-inclusive-practice-improving-ihnox47xjh.pdf

Participatory Research Into Inclusive Practice: Improving Services for People With Long Term Neurological Conditions

Objectives The multifaceted nature of the problems faced by someone with motor neuron disease requires a knowledgeable multidisciplinary team approach. Where available, generally, such services are only provided on an outpatient basis, meaning that hospitalised patients are frequently admitted to non-specialist wards where understanding of their needs is limited. Little is known regarding the inpatient care received by patients. Our objective was to address this by exploring the experience of hospitalisation following a diagnosis of motor neuron disease from the perspective of family carers of those diagnosed with the illness. Method This was a qualitative secondary analysis of pre-existing data from two previously published, separately conducted, qualitative studies. The study involved interview data from 18 bereaved carers and 3 current carers of family members diagnosed with motor neuron disease in Northwest England. Results The findings reveal dissatisfaction with the inpatient care received, which impacted negatively not only on patient and carer enthusiasm for future hospital admissions but also on carer bereavement. Conclusions Patients with motor neuron disease have specialist needs that are not always met during hospital admission, particularly to non-specialist units. The inpatient care provided for these patients must be improved as must the knowledge and understanding of the illness among healthcare professionals who treat them.

/pdf/family-carer-perspectives-of-acute-hospital-care-following-a-3ozqia2god.pdf

Family carer perspectives of acute hospital care following a diagnosis of motor neuron disease: a qualitative secondary analysis

*Poster 1: Social Inclusion of Persons With Moderate Head Injury: The Points of View of Adolescents With Brain Injury, Their Parents, and Professionals

Towards Inclusive Living: a case study of the impact of inclusive practice in neuro-rehabilitation/neuro-psychiatry services (Department of Health Policy Research Programme LTNC Reference Number 530010)

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Towards Inclusive Living: a case study of the impact of inclusive practice in neuro-rehabilitation/neuro-psychiatry services (Department of Health Policy Research Programme LTNC Reference Number 530010)