Societal Impact of Aphasia & Reintegration

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.

Aim: 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 ofsalutogenesis, 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 rehabilitation and society

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