Decompressive hemicraniectomy following malignant middle cerebral artery infarctions: a mixed methods exploration of carer experience and level of burden

Abstract

Purpose: This study explores the experiences and sense of burden of family carers of survivors of malignant middle cerebral artery infarctions who had undergone decompressive hemicraniectomy. To date, there have been no studies examining carer outcomes among this unique population. This study, taken alongside an already published study of survivor outcomes, provides a more holistic picture with regard to sequelae within the sample. Method: Six family carers completed the Sense of Competence Questionnaire and the Hospital Anxiety and Depression Scale. These results were compared with existing normative data. Carers also consented to a semi-structured interview. Interview data were examined using thematic content analysis. Consistent with the mixed methods design, quantitative and qualitative findings were integrated for further analysis. Results: While carers experienced many losses, their overall sense of burden was not outside ‘Average’ limits, nor did they experience clinically significant symptoms of depression. All carers identified methods of coping with the demands of caregiving. These included intrapersonal, interpersonal and practical strategies. All carers apart from one were able to identify areas of post-traumatic growth. Conclusion: Carers will benefit from information, support and care. In addition, problem solving skills are essential in managing the myriad difficulties that arise in the aftermath of stroke.Implications for RehabilitationIn recent years, there have been an increasing number of survivors of malignant middle cerebral artery infarction.Little is known about the experience of carers for survivors of malignant middle cerebral artery infarctions.While carers must cope with multiple losses as they adopt a caregiving role, they can identify many methods for coping and if they receive adequate support may even experience post-traumatic growth as a consequence.