Information, communication, advocacy, and complaint: how the spouse of a man with aphasia managed his discharge from hospital

Abstract

ABSTRACT Background: The impact of stroke and aphasia has been recognised as a family problem for many years with studies highlighting spouses’ need for information at different times along the recovery journey, for practical and emotional support, recognition, and respite. In particular, the decision-making around discharge from hospital, or planning for rehabilitation, is not always collaborative even though family involvement assists family members to plan and adjust to their new caring role. Aims: This study aims to explore how the wife of a man with aphasia managed his discharge from hospital in the acute phase post-stroke. It provides an opportunity for health professional learning and sensitisation through the detailed analysis of a de-identified but a real case that happened to reflect key issues reported by families in previous research: lack of information, poor communication with healthcare professionals, and the need for advocacy. Methods and procedures: The data for this paper are drawn from two sources: a single in-depth interview with the wife collected as part of an earlier large multi-site study that included interviews with 48 family members of people with aphasia after stroke; and two complaint letters she wrote to the hospital and two letters received back. This study uses a narrative analysis of the interview, and a systemic functional linguistics (SFL) analysis of the letters in order to shed light on the key issues of information, communication, and advocacy. Outcomes and results: The narrative analysis of the interview and the SFL analysis of the letters together help to unpack the reasons why the wife felt motivated to write a complaint letter to the hospital where her husband had been admitted post-stroke. The letters themselves demonstrate careful choices of language for both parties, with the hospital discounting the wife’s concerns and closing down the exchange. They also reflect a profound misunderstanding by the hospital about the functional consequences of aphasia and its impact on the family. Conclusions: It is important that family members, taking on a caring role for people with aphasia after stroke, are supported with clear information and good communication in acute settings. This may enable them to be engaged in the recovery process as partners with healthcare teams and more effectively support adjustments to post-stroke life in the longer term.