Proefschrift Sandra Wielaert
In het proefschrift wordt een onderzoek naar de implementatie van ‘Partners van Afasie Patiënten Conversatie Training’ (PACT, Wielaert & Wilkinson, 2012) in de Nederlandse revalidatie praktijk beschreven. Tevens zijn kenmerken van personen met afasie (PMA) en hun (gespreks)partner onderzocht, die baat hadden bij deze training.
Het onderzoek werd verricht in het kader van het Revalidatie Innovatie Programma van Revalidatie Nederland en ZonMw. Het onderzoek werd uitgevoerd vanuit Rijndam Revalidatie te Rotterdam en werd gesubsidieerd door Revalidatie Nederland. Negen andere centra namen deel aan dit multi-centre onderzoek. Hieronder volgt de Engelse samenvatting.
‘The introduction of PACT into rehabilitation practice coincided with the participating centres’ ambition to include carers of stroke survivors more in rehabilitation. This ambition followed on from the acknowledgement that the main burden of care for stroke survivors, including persons with aphasia (PWA), is provided by family members and partners in particular, after their discharge from professional care. This ambition also translated in a positive outlook of professionals on PACT of which they saw the benefit for their clients. Nonetheless, based on the new knowledge represented in PACT, SLTs became more aware of the collaborative nature of communication and how this affected their view of partners as equal CPs rather than co-therapists of the PWA they treated.
Seven centres used PACT successfully during this study and included it as part of their stroke care provision. From a total of 263 potential dyads, 41 were included and 34 completed the study. Based on the relatively high number (47%) of eligible partners who proclaimed to have no care needs regarding communication, some partners may not have perceived themselves as recipients of training. Of the method of implementation, financial and educational strategies were the main contributors to uptake. Financial support allowed the centres to experiment with PACT so as to adapt it to local circumstances, while interactive education and outreach visits helped skill therapists. Time constraints posed the main barrier for thinking through and discussing the consequences of PACT with all team members. Therefore integration of this new tool in the centres’ care regimes was not fully established within the timeframe of this study. From the service-user perspective, partners found the time invested in carrying out the training was worthwhile both because they enjoyed it but also because it was useful to them.
This study offered some criteria for CPT candidacy. High caregiver esteem and high task oriented coping skills in CPs were important characteristics likely to promote engagement with PACT. Predominantly CPs of persons with severe aphasia engaged with this type of CPT at an average of 11.5 months post-stroke. This timing was mostly associated with the moment the PWA had returned home and the dyad was once more engaging in everyday conversations, in which the consequences of aphasia fully dawned on them. The link between depression and candidacy was complex; no relationship between depression in partners and candidacy was found, though depression risk was lower and coping skills better, after PACT.
An exploratory measure of conversation change was not able to predict benefit. The Intrinsic Motivation Inventory (IMI, Deci et al., 1994) was introduced in this study to measure self-reported experience and satisfaction with the training. Caregiver esteem predicted enjoyment of PACT and a sense of competence, as measured with the IMI. Severity of aphasia predicted how much effort CPs put into the training, which was also interpreted as a measure of the importance they adhered to this training.
The semi-structured interviews provided a valued addition to the implementation and candidacy results from the partner stakeholder perspective. Also for the CPs the collaborative nature of conversations, highlighted in PACT, provided them with a new perspective, one they were initially unaware of. This finding contributed to the identification of two themes: ‘the nature of communication is difficult to grasp’ and ‘balancing roles as partner, carer and client’. The consequences of these themes for clinical practice included the need for professional clarity about the nature of communication and what could be offered to support persons with aphasia and their family members to live –more successfully- with aphasia’