Aphasia is an acquired language disorder due to brain damage. People with aphasia (PWA) show difficulties in producing or comprehending spoken or written language (Orchardson, 2012). Aphasia is a common consequence of stroke. It occurs in about 30 % of all stroke patients (Pedersen et al., 1995). Up to 80 % of aphasia are the result of a cerebral insult (Kolominsky-Rabas & Heuschmann, 2002). Every year around 270,000 people in Germany suffer a stroke. The prevalence of aphasia is around 100,000. It will continue to rise due to demographic change and increasing survival rates because of improved medical care (Rothwell et al., 2004).
PWA often have a reduced quality of life (Hilari et al., 2012). It is even known that aphasia reduces quality of life even more than cancer or Alzheimer’s disease (Lam & Wodchis 2010; Manders et al., 2010). PWA experience considerable psychosocial changes along with a loss of autonomy and reduced social participation to the point of social withdrawal (Vickers, 2010; LeDorze et al., 2014; Musser et al., 2015; Jones, 2017; Konnerup, 2018). Along with social isolation (Lee et a., 2015), up to 62 % of PWA show signs of depression twelve months after a stroke (Kauhanen et al., 2000). PWA take part in fewer social activities (Cruice et al., 2006; Vickers, 2010). As a result, they are also exposed to the risk of losing contact with friends and their wider social network (Fotiadou et al., 2014; Vickers, 2010; Northcott & Hilari, 2011, Ellis et al., 2019). Lack of involvement in the social context and the associated emotional burden lead to a considerable impairment of quality of life of PWA (Hilari et al., 2012; Lee et al., 2015; Santo Pietro et al., 2019). In addition, mobility is often reduced, which further restricts participation and quality of life (Lee et al., 2015).
A possible solution could be to participate in daily activities with family, friends or self-help groups. Activities and relationships that are perceived as meaningful are decisive for quality of life and successful handling of aphasia (Brown et al., 2012). In particular, support from peers in a similar situation is seen as beneficial (Hilari et al., 2021; NHS Improvement - Stroke, 2011). Even basic emotional support from peers significantly reduces depressive symptoms (Mead et al., 2001). For stroke patients in the acute phase, individual peer support leads to emotional relief (Kessler et al., 2014). With support from other PWA, a target group-specific, antidepressant, preventive effect can be achieved (Baker et al., 2018). Peer befriending consists of social and emotional support provided by people with experience of a (similar) condition in order to aid social or personal change (Solomon, 2004). The term “peer friendship” is widely used in mental health (Repper & Carter, 2011). One-to-one peer support (also called peer befriending) has the potential to improve psychological well-being in stroke and aphasia (Hilari et al., 2021). Mutual support and shared experiences increase the experience of self-efficacy (Solomon, 2004; Lanyon et al., 2018). However, the number of studies on peer support in the area of aphasia is still limited because most previous studies on peer-to-peer or peer-befriending support exclude PWA (Hackett et al., 2008). In the UK, a professionally guided, peer-befriending approach aiming at depression prevention was tested in a face-to-face tutor setting for PWA (Hilari et al., 2019). One participant in the acute phase was directly matched with one peer-befriender at least 1 year post-stroke. The study succeeded in establishing friendships between people with aphasia of the same age. There are indications that this procedure could prevent or reduce depression. Especially PWA post-stroke experiencing low levels of distress could benefit from the peer-befriending approach, particularly for mood in the longer term (Hilari et al., 2021).
With regard to self-help in aphasia intervention, the peer-to-peer approach has been increasingly considered in recent years (Tregea & Brown, 2013). Correspondingly, individual matching supervised peer-befriending approaches could also be used successfully in groups (e.g. Attard et al., 2015). PWA particularly benefit from exchange with peers in groups. However, these are often not managed by PWA themselves, but predominantly by speech-language pathologists or other health professionals (Lanyon et al., 2013). Therefore, PWA remain passive recipients of help (Code et al. 2003). Participation of PWA could be improved by giving them an organisational and moderation function within the group (Rotherham et al. 2015). This was the starting point of the research project “Support groups for people with aphasia – improving quality of life and competence” (shalk; Lauer & Corsten, 2018). The aim was to develop a training programme for peer leaders to enable them to run a group by themselves. Furthermore, quality of life of the group leaders and members was evaluated (Lauer & Corsten, 2018). The preliminary results show the effectiveness of the approach (Corsten et al., 2018).
However, structural restrictions make it difficult to participate in support groups (mobility, lack of speech therapy provision, especially in rural or underserved areas; Hilari et al., 2021; Lanyon et al., 2018). Such barriers to social participation could be remedied using digital solutions. Digital media can increase autonomous, social participation in the case of health impairments, as Moorhead et al. (2013) found in a review (regarding depression see Takahashi et al., 2009). In this way, contacts and friendships could even be made over distance. This could be helpful especially for people in socially problematic situations. Existing social media platforms such as Facebook are, however, too complex for PWA (Buhr et al., 2017). Moreover, adapted services so far relate primarily to exchanges via email (e.g. Mahmud & Martens, 2013, 2016; Thiel et al., 2017; Menger et al., 2020). Until now, digital media in aphasia rehabilitation have concentrated mostly on augmented communication in analogue situations and language-specific training as a videoconference (Brandenburg et al., 2013; Bilda, 2017; Asghar, 2021). Initial concepts use virtual environments in order to practice specific language skills (Egaji et al., 2019), but also social participation in groups e.g. EVA Park (Galliers et al., 2017; Marshall et al., 2020). Digital, autonomously usable peer-to-peer support for PWA to increase social participation has not yet been investigated.
There is a pressing need to develop digital interventions to improve the psychosocial well-being of PWA (Hilari et al., 2019). Technical aids can improve access to and quality of communication among PWA (Dalemans et al., 2010). Yet it must be noted that aphasia is often associated with other neurological deficits such as hemiparesis or hemianopia (Fisher, 2009). Furthermore, as aphasia is more common among older adults, digital skills are often lacking (Menger et al., 2020). Possible secondary neurological diagnoses and the advanced age of the target group must be considered when designing the app. Nevertheless, Buhr et al. (2017) found in a feasibility study that an adapted social media tool used for the asynchronous exchange between PWA facilitated interaction among individuals with aphasia. The social network AphasiaWeb developed by Buhr et al. has a linguistically and visually simplified layout and multimodality input/output features. However, activities cannot be planned. The added value of a new social network over existing ones should be the mediation of “matching” PWA with regard to similar interests, but also same experiences for emotional and psychological support. In addition, it is necessary to support relationships by offering chat functions and a platform for appointments, activities and exchanges.
The project “Peer-to-peer support: digital networking in aphasia to improve quality of life (PeerPAL)” involves the development and evaluation of a social network in the form of a smartphone app. A participatory research approach is used by integrating the expertise of speech and language therapists on the one hand, but also the expertise of PWA on the other hand in the development process. Findings will be gained on digital learning for older adults under the condition of linguistic restriction. The guidance and support the target group needs must be clarified. In detail, this includes the creation of a catalogue of requirements for the app in collaboration with PWA. In addition to implementing important functions such as the chat function or text input, it is becoming apparent that a matching function would help the target group to identify participants with similar interests. By testing the app as part of the participatory study, content-related and technical difficulties can be eliminated as far as possible. The aim is to gain knowledge of how digitisation can be used to promote a digital, but also analogue exchange between PWA.
The study contributes to digital exchange within a vulnerable population group and offers the potential to relieve both relatives of PWA and the health system. Since most PWA strengthen the bond with closest family members after stroke, they come into focus and constitute the most important contacts (Hilari & Northcott, 2006; Ellis et al., 2019). Exchange with other PWA can improve communication within the family, can reduce reliance of PWA on family members and can provide an opportunity for family members to have time on their own (Rotherham et al., 2016).
The overall goal of the PeerPAL project is to develop and evaluate an app to improve social exchange and quality of life in PWA. In addition, the app should help prevent depression. Exchange via a digital social network is also intended to prevent reduced psychological well-being and social withdrawal. The digital solution should help overcome physical distances. In addition to digital exchange, face-to-face meetings with peers and participation in social activities will be stimulated, which should result in further improvement of social inclusion. Closely related to the overarching goal is the implementation of the app to promote independence of PWA.
The first phase of the PeerPAL intervention program involves developing the app. Four PWA will be consulted within a user-centered, agile development process design. Thus, the concept will be developed and validated. In the second project phase, use of the app will be evaluated in a pretest-posttest control group design in form of a feasibility study. Additionally, in a third project phase, the app will be evaluated in the main study. A pretest-posttest design is used again, but this time with two subsequent follow-up surveys.
With smartphone-based peer-to-peer support, the subjective quality of life of PWA measured with the Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39, Hilari et al., 2003) should significantly increase immediately after the intervention as compared to the baseline. This effect will remain stable over 3 and 6 months, respectively.
With smartphone-based peer-to-peer support, the psychological well-being of PWA in the intervention group should remain stable over the entire course of the study. Two tests are used to assess psychological well-being, the General Health Questionnaire (GHQ-12; Goldberg et al., 1988) and the Depression Intensity Scale Circles (DISCs, Turner-Stokes et al., 2005). Psychological stability is constant in the intervention group immediately after the intervention as compared to the baseline.
Changes in quality of life, measured with the SAQOL-39, are greater in the experimental group than in the control group. Furthermore, participants of the intervention group will achieve a significant increase in their activities immediately after the intervention compared to the baseline. The activities are recorded in a structured activity diary (ATB; Bach et al., 2013). With the help of the Social Support Questionnaire (F-SozU, Fydrich et al., 2007), statements about support from the social environment are measured. Social support, especially through peers, will significantly increase immediately after the intervention compared to the baseline. The effects remain stable up to 6 months after the intervention.
Communication skills of the participants in the intervention group will significantly increase immediately after the intervention compared to the baseline. Communicative abilities are assessed using the Communicative Participation Item Bank (CPIB; Baylor et al., 2013). Again, the changes will be greater in the intervention group than in the control group. The effects remain stable up to 6 months after the intervention.