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 Rehabilitation

• In 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.

Keywords::

• Carers
• craniectomy
• middle cerebral artery
• outcome
• psychosocial
• stroke

Declaration of Interest:: The authors report no declarations of interest.

Appendix

Semi-structured interview schedule

Family carers were asked the following questions. They were also asked to clarify their responses or expand on them as necessary.

• Since X had the stroke and subsequent surgery, have you noticed any changes in his/her personality?

• Since you became carer to X, how has your life changed?

• What has been most rewarding in terms of your role as close family member/main carer to X?

• What has been most difficult in terms of your role as close family member/main carer to X?

• Is your sleep affected because of your carer duties?

• How are you affected physically/psychologically as a result of your carer duties?

• What kinds of things are you able to do now that you are a carer (which perhaps you were unable to do previously)?

• What kinds of things are you unable to do now that you are a carer?

• Have you had to make any major adjustments to your life since you became X’s main carer?

• Have some things not changed since you became X’s main carer?

• Is there anything else you would like to say or that you think is important?