Two-level multi-methodological evaluation of a new complex primary support programme for stroke care-givers in Germany

Abstract

AbstractFamily care-givers are the backbone of the long-term support system for care receivers at home. Care for stroke survivors after rehabilitation primarily rests on the shoulders of family members, often of older age themselves. We report the outcomes of a new complex support programme, the Care-givers’ Guide, on both individual and system levels. Psycho-social support and personalised information were the main ingredients of this intervention. A two-level multi-methodological approach was needed, with two concurrent interconnected studies. Family care-givers reflected on outcomes at an individual level in a quant-QUAL study with a pre–post quantitative questionnaire and a post-intervention qualitative semi-structured interview. Practitioners participated in a QUAL-QUAL study ex post interview, reflecting on the outcomes on the care-givers and on their own stroke care system. Individual family care-givers showed an increase in health literacy and level of psycho-social health. Qualitative analysis revealed improvement in knowledge, capability to act and individual empowerment; and stabilisation of sense of certainty, life balance and emotional wellbeing. Practitioners observed an optimisation of the stroke support system by improving professionals’ daily routine, augmenting the institutional support offer, securing the quality of patient care and increasing inter-institutional co-operation attempts. Positive outcomes of the support programme were observed on both evaluation levels: family care-givers showed improved health literacy and psycho-social health, whereas the professionals noticed an optimisation of the support system.