Social participation of relatives post-stroke: the role of rehabilitation and related ethical issues

PURPOSE: (1) Describe the challenges facing relatives of persons with stroke in accomplishing their daily activities and social roles (participation). (2) Reflect on the role of rehabilitation for relatives and ethical issues that may emerge following the adoption of a family-centred approach.

METHOD: Review of the scientific literature in Medline (1996 to July 2009), Embase (1996 to July 2009) databases using keywords: stroke AND participation AND family OR spouse OR caregivers AND ethics AND burden. Selection criteria were as follows: study must examine the participation of relatives post-stroke (or equivalent concept such as burden), rehabilitation interventions for relatives post-stroke or ethical issues related to being a relative of a person with stroke. Articles not written in English or French were excluded.

RESULTS: The sample comprised 17 scientific articles. According to five studies, social participation of relatives is characterised by increased responsibilities and a reduction in interpersonal relationships and leisure. In rehabilitation, there is no consensus regarding what should be done for relatives; guidelines exist but are not applied in practice. Little has been formally reported regarding ethical issues likely to emerge for relatives.

CONCLUSIONS: The main impact of stroke is on social roles of relatives such as responsibilities, interpersonal relationships and leisure. The role of rehabilitation and related ethical issues needs further examination.