Transformation of the Relationship: The Experience of Primary Support Persons of Stroke Survivors

Abstract

The primary support persons (PSPs) of stroke survivors are faced with many challenges as they help reintegrate the stroke survivor's life, as well as their own. Because it often is the PSP with whom nurses negotiate goals, teach, and counsel, it is important for nurses to understand the stroke experience from the PSP's perspective. The purpose of this study was to investigate the quality, or nature, of life as experienced by PSPs of stroke survivors. The qualitative design for this study was an existential‐phenomenological approach, focusing on meaning. This involved an analysis of in‐depth phenomenological interviews of 10 PSPs of stroke survivors. The experience of being a PSP of a stroke survivor is one grounded in the relationship in time. From this ground emerges themes of fragility, vigilance, and loss/responsibility. These themes help define the essence of the experience, which is a transformation of the relationship. The findings provide nurses with an understanding of the PSP's experience, and thus a foundation upon which to provide holistic care for the stroke survivor and family.

Informal primary carers of stroke survivors living at home–challenges, satisfactions and coping: A systematic review of qualitative studies

“…Whilst often it was implied that the interview was conducted by a member of the research team, the identity of the interviewer was rarely explicitly reported. The exceptions were five studies where a trained nurse [20], the primary investigator [21,27,29] or a research assistant [25] interviewed participants.…”

“…Interviews were variously described simply as 'interviews', 'semi-structured', 'unstructured' and 'in-depth' interviews. One study [22] described their method as 'semi-structured, in-depth' interviewing and another 'phenomenological' interviewing [27]. Another used both interviews and observations [29] and another employed a semistructured survey and analysed participants' online discussions [26].…”

“…The aims of one study covered both these [23] although the analysis focused on needs. Nine studies [14][15][16]20,22,24,25,27,28] were reported as part of a larger project which had implications for the methods used and the findings reported. Two articles formed part of an intervention study [20,26].…”

“…The most frequent method described time since stroke [15][16][17][18][19]21,22,27]. Others used time since caring role commenced [14,23,29] or time since discharge from inpatient services [13,20,26,28].…”

“…The aims of the studies identified for the review tended to either emphasize the experiences, perspectives and expectations of caring [15,16,18,21,22,[26][27][28][29] or to stress carers' problems, needs and concerns [13,14,17,19,20,25]. The aims of one study covered both these [23] although the analysis focused on needs.…”