Table 1 Summary of the development of the Intervention

Systematic literature review

i) To identify the feasibility, acceptability, and effectiveness of self-management interventions for community-dwelling stroke survivors to inform the development of the intervention in this study

• Published literature sourced via key health-related databases (including Cinahl, Medline, Embase, PsycInfo & Cochrane Controlled Trials Register), published in English language, between 2000 and 2012, using terms related to ‘self-management’ and ‘stroke’ as keywords and subject headings

• Relevant studies meeting the following criteria were included: quantitative or qualitative evaluation of an intervention, focussed on community-dwelling stroke survivors aged 18 years and over, and where the intervention was labelled as ‘self-management’ or clearly underpinned by the principles of a ‘person-centred’ approach to self-management (as developed by Lawrence and Kinns, 2012)

ii) To identify gaps in existing research on stroke self-management interventions

• Data extracted from relevant studies and quality appraisal conducted (by SR, LK, ML, JB, AR)

• Findings synthesised and presented narratively

Qualitative semi-structured interviews & focus groups

i) To understand stroke survivors’ perceptions towards self-management

• Qualitative semi-structured interviews with 20 stroke survivors & qualitative focus groups/telephone interviews with 11 stroke nurses from three Scottish health boards (conducted by SR & LK).

• All interviews/focus groups lasted approximately one hour.

ii) To understand stroke nurses’ perceptions towards stroke self-management and stroke self-management support

• Interviews with stroke survivors were conducted in participants’ homes and specifically explored their perceptions and attitudes towards self-management and self-management support, in particular their needs, abilities and preferences.

• Focus groups with stroke nurses were conducted in their practice base and specifically explored their perceptions and attitudes towards self-management, their current provision of tailored stroke self-management support and the context of, and barriers and facilitators to, its implementation in practice (including training and support needs). The interviews also aimed to discuss their views on what should be incorporated into the stroke self-management intervention that could be delivered within the context of their daily clinical practice and their specific training needs for delivering this.

•Interviews/focus groups were audio-recorded,

• Transcribed and thematically analysed to identify key issues and themes within the data (Braun and Clarke, 2006).

• Emerging codes and themes were consistently questioned and reviewed by members of the research team (LK, SR, ML, JB, AR) and the advisory group to ensure credibility, transparency and trustworthiness of the emerging findings.

Completion of the Patient Activation Measure

i) To obtain a quantifiable measurement of patient activation

• Completion of the Patient Activation Measure (PAM),² with 20 stroke survivors, which was designed to provide a quantifiable measurement of how able and confident each individual felt to engage in their self-management (conducted by SR)

ii) To determine ‘level of activation’ across the study sample

• The Patient Activation Measure is a patient-reported outcome measure (PROM) containing a series of 13 statements designed to assess the extent to which an individual feels that they have the responsibility, confidence and knowledge to self-manage (Hibbard and Gilburt, 2014). Individuals are asked to rate the degree to which they agree or disagree with each statement; responses are combined to provide a single score of between 0 and 100, which represents the individual’s perception of themselves as an active self-manager (higher scores = greater perceptions of activation) (Hibbard and Gilburt, 2014).

iii) To ‘test out’ the PAM and identify any preliminary issues in its use (prior to evaluation phase)

• PAM data were analysed using descriptive statistics (AR)

• During the interviews, stroke survivors were also asked for their thoughts on the content and wording of the questions in the PAM and its ease of use.