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

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After physiotherapy ends, rehabilitation 'work' is passed to people with stroke and their families, who often feel overwhelmed. Supported Self-Care Rehabilitation (SS-CR) interventions (physiotherapy, assistive-technologies, etc) are being developed but with limited consideration of the burdens they generate. Excessive burdens may reduce people's capacity to cooperate in care and limit recovery. Understanding ‘rehabilitation burden' is vital to providing appropriate support and developing minimally-disruptive interventions. This research will review the literature, conduct interviews, develop a model of SS-CR and design a questionnaire to measure the burden of SS-CR with the aim of minimising the burden of future stroke rehabilitation interventions.


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.


Associated research themes


NIHR - Trainees Coordinating Centre

Related research groups

Active Living and Rehabilitation
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