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Societal Impact and Re-integration Research

 

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Functional communication may vary considerably between individuals, context and language. This WG will co-ordinate a consensus activity to establish the optimum approach to capturing these important outcomes of aphasia rehabilitation and if appropriate identify future avenues for the further development of this topic area.

Social integration is often viewed as the ultimate outcome for people with aphasia. The aims of the WG5 are to:

  1. Develop consensus statements about the expected outcome of aphasia rehabilitation.
    Aphasia researchers have yet to define and describe the ultimate outcome of aphasia rehabilitation. While research may seek to improve the outcome through a variety of means using a variety of outcome measures, greater consensus about the overarching goal of aphasia rehabilitation will help to align the research towards a common outcome.

  2. Develop consensus definitions of the terms used, particularly those relating to Participation and Quality of Life.
    Consensus about key terms used will be developed using the World Health Organization’s ICF conceptal framework and terminology.  The A-FROM is an aphasia adaption of the ICF and this will be promoted throughout the COST Action.

  3. Promote a common understanding and use of ICF and A-FROM terminology.
    Aphasia researchers are from varied disciplines and use a variety of theories, models and conceptual frameworks.  WG5 will continue to promote a deeper understanding of the WHO framework and terminology throughout the term of the COST Action to facilitate better communication amongst aphasia researchers.

  4. Liaise with existing aphasia research networks to collate what research has been completed in the area of social integration and identify potential research gaps.
    WG5 will aim to identify and collaborate with other aphasia research networks to map social integration research in aphasia with the aim of identifying potential research gaps.

 

 

Asset-based Community Development (ABCD)

Background

Much of the focus on and most of the resources for aphasia rehabilitation have been on interventions early after onset. For example, clinical guidelines generally suggest that active rehabilitation should focus on the first six months, when most physical recovery is achieved. However, getting back to life and making the necessary adjustments to living with aphasia can take much longer. The social and personal context of long-term recovery, adjustment to disability and re-integration into family and community is important for people with aphasia. However, there is still considerable uncertainty about the nature of aphasia rehabilitation and resources necessary for supporting reintegration into society.

 

 

Aims

We are exploring the potential of an ‘asset-based’ approach for people with aphasia and their families. Asset-based Community Development (ABCD) approaches have been used successfully in other health fields (e.g. reshaping care for older people; people with mental health needs) to improve people’s lives and life chances by focusing on what improves their health and wellbeing, protects against ill-health and reduces health inequalities. This approach is community-centred, focusing on ‘what makes us healthy?’ rather than ‘what makes us ill?’ It is underpinned by the theory of salutogenesis, which highlights the resources and capacities that positively impact people’s health.

Assets are realised, expressed, mobilised and sustained through people’s actions, connections and participation at individual, community and organisational levels. Asset-based approaches are built on the assumption that health and social care services have become too focused on ‘treating illness’ to the detriment of promoting wellbeing (a deficit-based approach).

We are exploring how an asset-based approach could be operationalised for people with aphasia and their families. We have based our work plan on a ‘theory of change model’ (Hopkins & Rippon, 2015), which has four elements: i) Reframing towards assets; ii) Recognising assets; iii) Mobilising assets; iv) Co-producing assets and outcomes.

We are focusing on the first two levels in the first instance, with studies being undertaken in the UK (Horton, Pearl), Israel (Soskolne, Olenik) and Norway (Haaland-Johansen); and further studies planned in other countries. We are meeting with people with aphasia and / or family members to introduce and discuss the concept of an asset-based approach, using appreciative inquiry, which focuses on strengths and successes e.g. “What makes you feel well?”; “What do you do that makes you feel good?”; “What connections do you value most?”.

Meaningful Evaluation in AphaSia in REhabilitation and Society (MEASURES)

Background

There are numerous outcome measures used in aphasia rehabilitation as well as in research aiming to capture more than improvement of language modalities after aphasia therapy. However their aims and scopes vary across and beyond the ICF domains of activity, participation, environmental and personal factors to wellbeing, quality of life etc.

MEASURES project aim to provide a review of the psychometric properties and utility of instruments (assessments, tools, questionnaires, checklists) that evaluate activity, participation and quality of life for people with aphasia. MEASURES has a sub-group who are specifically reviewing instruments from Nordic countries (Elisabeth Ahlsen, Lise Randrup-Jensen, Jytte Isaksen, Line Haaland-Jensen, Karianne Berg, Gabriele Kitzmüller); and a broader group who are systematically reviewing wider EU/English-published instruments (Madeline Cruice, Luis Jesus, Assunção Matos).

Supporting Communicative Participation of Individuals with Aphasia

Team: Lise R. Jensen, Elisabeth Ahlsén, Madeleine Cruice, Simon Horton, Carole Pound; Jytte Isaksen, Monica Blom-Johansson, Nina Simmons-Mackie

Funder: Danish Research Council (grant award DFF – 4180-00046), Start October 2014

"What can I do for you?" - A visual communication guide for health care workers who are treating people with aphasia

Team: Gabriele Kitzmüller, Karianne Berg, Line Haaland Johansen and Dafna Olenik

 
Funder: Extrastiftelsen Helse Rehabilitering in cooperation with the Norwegian Aphasia Association (Norway) 220 000 NKR (€22500). Start: 9th Jan 2015 End: 31st Dec 2016.

Definition of Aphasia

Team: Linda Worrall, Karianne Berg

Transforming access to cost effective aphasia services: the Australian Aphasia Centre for Research Excellence

Team: Linda Worrall, Miranda Rose, Leanne Togher, Tim Shaw, David Copland, Lyndsey Nickels, Erin Godecke, Marian Brady, Julie Bernhardt, Geoffrey Donnan, Dominic Cadillac, Anne Hill, Emma Power, Nina Simmons-Mackie, Deborah Hersh, Robyn O’Halloran

Funder: Australian Government National Health and Medical Research Council. Submission Jan 2016 

Engaging Significant Others in Early Rehabilitation of Patients with Aphasia

Lead: Lise Randrup Jensen 

Funder: Danish Research Council. Submitted: 16th October 2015. Decision Expected: June 2016


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