How do person‐centered outcome measures enable shared decision‐making for people with dementia and family carers?—A systematic review

Abstract

Objectives To identify published evidence on person‐centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision‐making and improve outcomes of care. To build a logic model based on the findings, depicting linkages with PCOM impact mechanisms and care outcomes. Design Mixed‐methods systematic review. We searched PsycINFO, MEDLINE, CINAHL, and ASSIA from databases and included studies reporting experiences and/or impact of PCOM use among people with dementia, family carers, and/or practitioners. Groen Van de Ven's model of collaborative deliberation informed the elements of shared decision‐making in dementia care in the abstraction, analysis, and interpretation of data. Data were narratively synthesized to develop the logic model. Setting Studies were conducted in long‐term care, mixed settings, emergency department, general primary care, and geriatric clinics. Participants A total of 1064 participants were included in the review. Results Ten studies were included. PCOMs can facilitate shared decision‐making through “knowing the person,” “identifying problems, priorities for care and treatment and goal setting,” “evaluating decisions”, and “implementation considerations for PCOM use.” Weak evidence on the impact of PCOMs to improve communication between individuals and practitioners, physical function, and activities of daily living. Conclusions PCOMs can enable shared decision‐making and impact outcomes through facilitating collaborative working between the person's network of family and practitioners to identify and manage symptoms and concerns. The constructed logic model demonstrates the key mechanisms to discuss priorities for care and treatment, and to evaluate decisions and outcomes. A future area of research is training for family carers to use PCOMs with practitioners.

Co‐design of the EMBED‐Care Framework as an intervention to enhance shared decision‐making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study

“…The results of the co‐design workshops were used to refine the logic model of the intervention for shared decision‐making developed originally from the systematic review 36 . The logic model details the components of the intervention, the intervention requirements for implementation and linkages between mechanisms of impact and anticipated benefits (Figure 3).…”

“…The logic model detailed how a person‐centred outcome measure could facilitate understanding of an individual's needs by the person, their family carers and/or practitioners completing the measure to identify unmet symptoms or concerns, and discuss and agree priorities for care and treatment. We used the logic model to highlight gaps, including how to manage multiple preferences and priorities for care and treatment, training and support for family carers, and how and when to evaluate the decisions made 36 . The logic model was used to design the workshops, including the topic areas considered, tasks undertaken and priorities for discussion to address uncertainties.…”

“…This theoretical model of decision‐making informed an initial systematic review on using person‐centred outcome measures to support shared decision‐making in dementia care 36 . A conceptual logic model, detailing how the intervention worked to improve outcomes and areas of uncertainty, was constructed from the review findings 25,37 .…”

“…The codes were refined and used to construct initial themes. The underpinning logic model and shared decision‐making model informed and guided the initial codes, before theme development 36 . This initial deductive analysis explored the data for patterns on how and when the intervention could enable shared decision‐making, including frequency of use, who was involved in using it and how.…”

Views of Older Adults on Using Support to Prevent Overload in Informal Caregivers: Results of a Story Completion Study

“…To successfully guide this process, however, research implies that a stronger focus is required in health and social care professionals' education on developing competence in involving the family perspective [33]. Furthermore, research is needed on how divergent preferences can be best managed in practice, as empirical evidence on this topic is still sparse [33,34].…”