Abstract
Background and purpose: Stroke survivors in an in-patient (IP) setting often do not receive the recommended amount of therapy nor achieve the number of repetitions thought to be required to promote neuroplasticity. Time outside of dedicated therapy is under-exploited. There is a need to understand service users’ perspectives of what helps or hinders engagement in supplementary self-directed practice (SDP), as it has the potential to increase practice and help drive improved recovery. This study explored factors stroke survivors and their whānau perceived as influencing engagement in SDP outside of dedicated therapy in an IP rehabilitation setting.
Methodology: Six stroke survivor and whānau dyads from one IP stroke rehabilitation ward at a publicly funded New Zealand (NZ) hospital participated in semi-structured interviews. The interviews were recorded and transcribed, and an Interpretive Description methodological approach was employed.
Results: Three key themes related to barriers and facilitators to SDP post-stroke were identified: (1) ‘Navigating SDP in a changing environment,’ (2) ‘The when, what, how, and who of SDP’ and (3) ‘Seeking a collective approach to SDP.’ Barriers included post-stroke impairments, breakdowns in communication and trust with staff, not knowing what or how to practice or how SDP could be supported, set-up assistance being unavailable, and unfamiliar contextual factors. Stroke survivors were confronted by fears of falling or injury, getting it wrong, and being unable to return to meaningful occupations and participation. Facilitators included recognising progress and celebrating this with whānau, positive reinforcement from others, and the right level of challenge with tasks. Open, consistent communication, trust, and rapport between stroke survivors, whānau, and staff are facilitatory. Stroke survivors and whānau sought knowledge, time, and feedback from staff to support engagement in SDP, and a collective approach is beneficial. Furthermore, SDP should be linked to enjoyed and meaningful social participation, and context transferability should be considered.
Discussion: Participants’ narratives in this study support a growing body of literature focusing on engagement in both rehabilitation and SDP. The use of SDP remains underutilised, and HCPs, whānau, and peers play a pivotal role in supporting stroke survivors' improved engagement. Findings suggest the health care professional (HCP), team, and service should reflect on how to best support collective knowledge development, build whānau confidence and skills to support SDP engagement, and improve environmental setup and orientation. Four key recommendations to support HCP knowledge and practice change are identified: (1) Knowledge required by stroke survivors and whānau, and how clinicians can best support knowledge development; (2) Reframing SDP to be a collective practice; (3) Reconceptualising SDP within enjoyed social participation: supporting engagement and encouraging the transferability of skills to different contexts; and finally (4) Systems and processes to support sustained engagement in SDP. A knowledge translation tool is proposed to assist staff in identifying and understanding perceived barriers and facilitators to SDP engagement in IP stroke rehabilitation from the service user perspective.