F@ce: a team-based, person-centred intervention for rehabilitation after stroke supported by information and communication technology – a feasibility study

Digitalisation in society, as well as in health care and rehabilitation, has increased rapidly in recent years [1, 2]. In line with this development, the Swedish government has created a vision of becoming a global leader in digital health solutions by 2025 [2]. Digitalisation can be a valuable tool for increased participation in society for people with disabilities as after stroke [3, 4]. There are a range of concepts and definitions that address different aspects of digitalisation in health care such as e-health, tele rehabilitation and health informatics. In this study, the term Information and Communication Technology (ICT) is used, including all technologies that are used interactively for communication and transfer of information, such as mobile phones, tablets and computers, as well as the applications and software of such devices [5].

The ability to manage activities in daily living (ADL) and participate in everyday life, including work, leisure and social activities, is often restricted after a stroke [6‐9]. Thus, the everyday life after stroke has been described as chaotic and receiving rehabilitation to manage ADL is often a priority [8, 10]. The development of more user-friendly ICT solutions has created opportunities to provide ICT-supported rehabilitation services that could reduce some of the unmet needs of rehabilitation that are reported by people who have had stroke [9]. Although the evidence concerning the effectiveness of ICT is inconclusive [3, 4], a recent review has shown that interventions using ICT have beneficial effects on motor, higher cortical and mood disorders [4]. It has also been shown that ICT used as an alternative to face-to-face interventions could improve participation in daily life after stroke [3].

ICT could be utilised in rehabilitation after stroke to monitor rehabilitation progress and interact at a distance [3, 4]. The use of a mobile phone or computer has been shown to promote participation in everyday life and create a sense of security [11, 12]. Furthermore, the use of ICT-based interventions could reduce the number of home visits, thereby saving time and travel costs, particularly in rural areas [12, 13]. ICT solutions have also shown to enable person-centred care [14, 15] and facilitate communication and feedback from healthcare professionals [3, 16]. A concern among people with stroke is their potentially limited ability to manage different ICT devices. Earlier research has found that people could encounter a range of difficulties [11, 17, 18] but that people with acquired brain injury such as stroke could benefit from using ICT in their daily lives [11, 19]. Moreover, ICT could be successfully introduced and used within rehabilitation after acquired brain injury, regardless of age or previous use [20]. However, support is often needed, particularly when using a new device or when something unexpected happens [11].

A client-centred ADL intervention (CADL) was developed with the aim of enabling agency in activities and participation in everyday life among persons with stroke [21, 22]. The CADL was based on phenomenology with the lived experiences of the person as a point of departure for the intervention [23]. The client-centred approach included building a therapeutic relationship and ensuring that the person was actively involved in the goal setting and planning of the rehabilitation [24‐26]. The CADL was delivered by occupational therapists and evaluated in a randomized controlled trial (RCT) [21, 22] along with qualitative studies [27‐29]. The results of the RCT [21, 22] were inconclusive but the qualitative studies emphasized that sharing [28] and transparency [29] between therapists and the patients were benefits of using a client-centred approach. It was also shown that the CADL appeared to enhance the involvement of patients in goal setting and individualisation of the rehabilitation. In the present study, the CADL was further developed by following the Medical Research Council (MRC) guidelines for the development of complex interventions [30].

The results of the CADL study is a part of the evidence base in the development of the new intervention called F@ce that is presented in this study. One conclusion from the CADL evaluations was that all members of a stroke rehabilitation team should use the intervention. This is also recommended in the Swedish national guidelines for stroke care [31] and in this new intervention F@ce, the multidisciplinary teams were included. In line with the new multidisciplinary approach, the term client-centred was replaced with person-centred. The terms client-centred and person-centred are based on the same underlying theories as described by Rogers [32]. The person-centred approach views the person as having the potential to change and the therapist as being a facilitator in this process [32, 33].

The potential benefits and obstacles for using ICT within a person-centred rehabilitation intervention for people after stroke remain largely unexplored. Although healthcare professionals and persons with stroke have reported high levels of acceptance and satisfaction when using ICT interventions in stroke care, few studies have explored the outcome of such interventions [3, 34]. Thus, to meet the vision of the Swedish government [2], further research on the development and use of ICT within rehabilitation is needed.

Our assumption was that ICT could be used as a tool for reinforcing person-centred rehabilitation through increased sharing [28] and transparency [29]. According to the MRC guidelines, an important stage in the development of new interventions is conducting a feasibility study before testing on a larger scale [30]. Thus, this study had the following aim: to evaluate the feasibility of i) F@ce within in-patient and primary care rehabilitation after stroke, ii) the study design and outcome measures used, and iii) the fidelity, adherence and acceptability of the intervention.

The results of this feasibility study indicate that the F@ce intervention was feasible to use within both in-patient and primary care rehabilitation after stroke. The outcome measures that were used were feasible and took approximately 20–40 min to complete. Even though this study was not designed to evaluate the effects of F@ce as such, clinically significant improvements in the COPM and in the SIS were found in several of the participants after only 4 weeks, which is seen as promising. Overall, the participating teams and the persons with stroke were satisfied with F@ce, and adherence and acceptability were high. The fidelity of the teams to the intervention requires some improvement, for example, more time for workshop planning and preparation and better procedures for team members for following-up the intervention.

One of the main findings was that persons with stroke appreciated and adhered to F@ce to a large extent. In particular, they stated that the goals they had formulated, and the daily alerts were beneficial for their recovery. The results of the COPM also showed that the participants’ perceived performance and satisfaction increased. Thus, also using the COPM [40] as part of the intervention appeared to be appropriate and the therapists reported no difficulties in using the measurement. A culturally and contextually adapted version of the F@ce intervention showed that the COPM was usable and also showed significant results when evaluated in Uganda [12]. In this study, the COPM was performed by occupational therapists only, possibly because they were more used to using the instrument and because it was originally developed by occupational therapists. Other team members may therefore not have been accustomed to using the instrument. However, the COPM has previously been used in a team-based intervention and has been shown to improve person-centredness and participation in goal setting [52]. It could be that more introduction and guidance is required in using the instrument since it is considered appropriate for physiotherapists to use the instrument [53]. Following a stroke and/or other brain injuries, self-awareness could be an issue that could make goal setting difficult [47]. Nevertheless, it has been shown that the COPM can be used to set goals despite self-awareness issues, although support from significant others or a therapist may be necessary [54].

The F@ce intervention was developed to meet the current and future needs for rehabilitation of stroke patients. In this century, progress in the field of medical research has been greater than ever before in areas such as the development of new treatments and providing high-quality care [55]. Swedish health care is ranked amongst the best in the world in treating cancer, acute illness and vaccinations [51]. However, when it comes to caring for people with long-term illnesses, safe patient care and patient satisfaction, Swedish health care is ranked amongst the bottom third of over 40 countries worldwide [51]. The Swedish Health and Social Care Inspectorate (IVO) has reported that there are flaws in person-centredness and in the coordination of care in the Swedish healthcare system [56]. The IVO further reports the need to develop digital tools that are simple and usable for communication and follow-up, as well as to create a model for inter-professional teamwork [56]. The development of F@ce has taken such needs into account when creating a model for team-based rehabilitation with the support of ICT in order to enhance communication and enable follow-up from a distance. According to the teams’ logbooks, the overall fidelity to the components of F@ce was good. Also, even though the team had no daily contact and communication with the participants, they appeared to be motivated by the daily alerts and the rating system. Some of the participants reported that the goals needed to be adjusted more frequently, which could indicate that the professionals required further support in how to monitor and follow up the patients’ ratings.

Nevertheless, the results indicate that the most beneficial aspects of F@ce was the person-centred goal-setting process and SMS alerts. The findings show that the participants set their goals based on activities they needed and/or wanted to perform in their everyday lives. This is in line with the results of the F@ce study in Uganda in which all participants were positive about the reminder system and felt that it helped them regain their abilities and that the follow-up system was beneficial to their rehabilitation process [16]. According to the national stroke guidelines [31] and rehabilitation research, setting goals is an essential part of the rehabilitation process [57, 58]. This study shows that team members are important for providing support and guiding goal setting, but also for adjusting the goals during the rehabilitation process.

The time spent on preparing and training the teams to use F@ce was restricted to a two-hour workshop once a week for 3 weeks. This was less time for preparation compared to other studies performed within the research group. For example, in the CADL study, there were five full days of preparation over one month [28] and in Uganda the participating therapists took part in a series of workshops over eight half days [12]. In the evaluations of the implementation of the CADL intervention, the collaborative relationship between the occupational therapists and the researchers was described as a relationship that enabled the fusion of scientific knowledge and practice [27]. Thus, it is important for researchers to spend sufficient time building a relationship with professionals and sharing knowledge and experiences using a “healthcare professional-centredness” perspective. Successful implementation could also depend on personal factors such as if the professionals are motivated and have sufficient knowledge of the underlying theory and the implementation process [59]. Organisational factors such as having the necessary resources and support from management, as was the case in this study, have also been shown to be important [59]. Thus, flexible and supportive collaboration throughout the implementation process is important, especially when something unexpected occurs. During the implementation of F@ce, the second researcher was present at the units each week while collecting data and was therefore able to maintain a relationship with the teams and provide support. However, in future testing and implementation of F@ce, it would be beneficial to prolong the workshops and have an even closer collaboration between professionals and researchers in order for the teams to have time to implement new knowledge in relation to the intervention.

The stroke rehabilitation web platform was developed to provide an opportunity for the teams to collaborate with the participants by sharing their daily ratings, enabling follow-up when necessary. However, this platform was not used to the extent expected. Team members stated that they lacked the time or that using the web platform had not yet been incorporated into their routines. Instead, they usually followed-up the participants’ ratings and progress in face-to-face meetings. Some of the participants with stroke stated that they wanted better follow-ups and adjustments of their goals. These results are in line with previous research that highlights the challenges of working with person-centredness within a team, including communication and collaboration with a person and within a team as key elements of goal setting and rehabilitation planning [60].

A limitation of this study could be that several outcome measures, for example, SIS, were used at four and 8 weeks after inclusion, i.e. only 4 weeks apart. It would have been preferable if the inclusion and follow-up could have been further apart to identify plausible changes over time. Furthermore, the F@ce intervention needs to be evaluated through qualitative interviews with users, team members, patients, and their significant others in order to evaluate their experience of participating in the intervention. Health economic evaluations should be performed to analyse the cost of the intervention in terms of purchasing hardware and software. Another limitation is the lack of control group and the small sample size. A larger sample size could have provided greater precision of scores for the outcome measures. However there is no definitive sample size recommended for feasibility studies, rather a range from 10 to 50 participants or more [61]. A large scale RCT study needs to be performed to evaluate the effects of F@ce. The recruitment rate of 39% indicates a need for clearer inclusion criteria and a close communication with the recruiting team member during the recruitment process. However, only three participants dropped out after inclusion which is a promising result of the intervention. It should be noted that all participants had had a mild stroke. Nevertheless, a strength of the study is that F@ce was evaluated and found to be beneficial for participants with a recent stroke as well as for participants who had a stroke several years ago.

Lastly, in this study, ICT was used as a tool throughout the rehabilitation process to enable sharing and transparency between the rehabilitation team and participants with stroke by providing them with alerts and feedback. This is in line with the results of a recent scoping review which shows that ICT can be used as an alternative to face-to-face interventions in order to improve participation in daily life after stroke [3]. Nevertheless, it is important to consider which individuals to target so that nobody is excluded from rehabilitation when using ICT. For example, older people might prefer face-to-face interactions or phone calls in their contact with healthcare professionals and for such people non-digital alternatives must be available [62]. Thus, it is important to provide support for people who are inexperienced in the use of ICT or who have cognitive or physical impairments that might hinder their use of ICT. However, since the use of ICT support in health care and rehabilitation will probably be necessary in the future, the development and evaluation of the F@ce intervention have contributed to such a digital development process.

The F@ce interventions appeared to remind and inspire the participants to perform activities and to improve their participation in daily activities after stroke. However, the teams must identify routines for follow-up in order to ensure that they provide appropriate support.

Using the COPM seems to be suitable for evaluation of this type of interventions. Additionally, the results of this study found that several of the patients improved their self-perceived performance and satisfaction of the activities according to the COPM over 8 weeks.