Research project: Understanding and measuring the burden of supported self-care rehabilitation for people with stroke and their families - NIHR Post-Doctoral Fellowship.

 Aims

1) to develop a robust conceptual model of the burden of self-care rehabilitation in stroke: the factors which cause burden, its impact on people with stroke and their families and its effect on engagement with rehabilitation;

2) to develop a method for measuring SS-CR burden.  These are preliminary and vital steps in the task of developing and evaluating minimally disruptive interventions and technologies for SS-CR in stroke.

 

WORK PACKAGE 1 (WP 1): Framework synthesis  of qualitative research on patient perceptions of the impact of Treatment Burden

WORK PACKAGE 2 (WP 2): ELICITATION STUDY: In-depth qualitative interviews with up to 24people with stroke and their significant others to elicit perspectives on the burden of SS-CR interventions and the impact of these on relationships and treatment adherence. Data will be analysed using framework analysis

WORK PACKAGE 3 (WP3): DEVELOPMENT OF ROBUST CONCEPTUAL MODEL OF SS-CR BURDEN. Two groups of patients/carers and two of professionals/researchers will each meet twice to generate a taxonomy of SS-CR burden, derive generic propositions and generate explanatory relationships. This will develop and strengthen the construct and face validity of the model.

WORK PACKAGE 4 (WP4): DEVELOPMENT OF A SELF-REPORT INSTRUMENT TO MEASURE SS-CR BURDEN: Using the conceptual model developed in P1-P3 we will develop an instrument to measure SS-CR burden using the following phases: i) identifying objectives ii) developing outline scope of measure iii) constructing the measure including: items; directions for completion; and scoring instructions iv) refining the measure using cognitive interviewing techniques v) testing internal consistency, validity and reliability using traditional and latent test theory.