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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
How do person-centered outcome measures enable shared decision-making for people with dementia and family carers?-A
Jesutofunmi Aworinde1, Clare Ellis-Smith1, Juliet Gillam1
1Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation King's College London London UK.
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.
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