"I've never experienced this before, I don't know what I need"- a qualitative study on social support and self-care during the first year after an aneurysmal subarachnoid hemorrhage

Ann-Christin von Vogelsang; Susanne Pettersson; Anna Jervaeus

doi:10.1080/09638288.2023.2185689

"I've never experienced this before, I don't know what I need"- a qualitative study on social support and self-care during the first year after an aneurysmal subarachnoid hemorrhage

Disabil Rehabil. 2023 Mar 9:1-8. doi: 10.1080/09638288.2023.2185689. Online ahead of print.

Authors

Ann-Christin von Vogelsang^{1

2}, Susanne Pettersson^{3

4}, Anna Jervaeus⁵

Affiliations

¹ Heart, Vascular and Neuro Theme, Department of Neurosurgery, Karolinska University Hospital, Stockholm, Sweden.
² Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.
³ Inflammation and Ageing Theme, Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden.
⁴ Department of Medicine, Division of Rheumatology, Karolinska Institutet, Stockholm, Sweden.
⁵ Department of Neurobiology, Care sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.

PMID: 36895176
DOI: 10.1080/09638288.2023.2185689

Abstract

Purpose: To describe perceived support, support needs and self-care among individuals during the first year after an aneurysmal subarachnoid hemorrhage (aSAH).

Material and methods: The study had a qualitative descriptive design with a deductive approach using the concepts of social support and self-care. The informants (n = 16) had been treated for aSAH at a university hospital in Sweden and were interviewed one year after the event. The interviews were transcribed verbatim and a manifest directed content analysis was performed.

Results: The findings revealed great variation in the narratives, both regarding the support received and the support desired, as well as the described self-care abilities. All codes were covered by the predefined categories and subcategories: social support (including esteem/emotional support, informational support, social companionship, instrumental support) and self-care (including self-management, self-monitoring, symptom management, self-efficacy).

Conclusions: Not being offered the support needed aggravated the possibility to manage the new life after aSAH. The confidence in self-care abilities was influenced by symptom control and how much life had changed in comparison to before the aSAH. Educational efforts are suggested to facilitate the transition from hospital discharge and to promote specialized rehabilitation at home and self-care abilities.

Keywords: Qualitative research; rehabilitation; self-care; self-efficacy; self-management; social support; subarachnoid hemorrhage.

Plain language summary

Early supported discharge can be beneficial for aneurysmal subarachnoid (aSAH) patients, including a discharge plan with documented responsibility for continuing rehabilitation and information on follow-ups.Generic rehabilitation programs need to be adapted to a person-centered approach due to the large variation in aSAH patients’ support needs and self-care abilities.When planning educational efforts for aSAH patients, the use of a workshop format in the company of others affected is suggested, to share experiences and increase the sense of self-efficacy.