Addison’s Disease and Adrenal Crisis: A Phenomenological Study of the Patient Experience

Abstract

This study aimed to investigate the lived experiences and issues central to patients with Addison’s disease when they are hospitalised due to an adrenal crisis. Interpretive phenomenology was used to explore and understand the experiences of six participants with a diagnosis of Addison’s disease who had experienced one or more adrenal crises. Their shared experiences were analysed using Braun and Clarke’s thematic analysis. Three key themes arose from the analysis that explained participants’ experiences: responding, adjusting, and learning. The ‘Addison’s and adrenal crisis patient experience model’ was developed to illustrate how responding, adjusting, and learning impact the patient experience. To support future patients with Addison’s disease, this inquiry recommends education for healthcare practitioners in primary care and secondary services, particularly medical practitioners, nurse practitioners, and nurses who are likely to to aid treatment of adrenal crises. The development of a support group for people living with Addison’s disease to be able to connect and share experiences, was suggested by the participants. This in conjunction with education programmes may prevent adrenal crises and hospitalisations. The development of a clinical guideline is recommended to best support and instil confidence for healthcare practitioners, their patients and families. Te reo Maōri translation Te mate Addison me te tairaru repe kōihi: He mātainga whakaaro tūroro mō ōna wheako Ngā Ariā Matua Ko te whāinga o tēnei mātainga he tūhura i ngā wheako i te ao nei, me ngā take nunui ki ngā tūroro kua pākia e te mate Addison, ina kawea ki te hōhipera mō tētahi tairaru repe kōihi. I whakamahia te tikanga mātainga whakaaro wheako hei tūhura, hei rapu māramatanga hoki mō ngā wheako o ētahi tāngata tokoono whai wāhi mai kua tohua ki te mate Addison, kua pā mai hoki tētahi tairaru repe kōihi, neke atu rānei i te kotahi, ki a rātou. I tātaritia ō rātou wheako tiri mā te whakamahi i te tātaritanga tāhuhu a Braun rāua ko Clarke. E toru ngā tāhuhu i ara ake i te tātaritanga i whakamārama i ngā wheako o te hunga whai wāhi mai: te urupare, te panoni, me te ako. I whakawhanaketia te ‘tauira wheako tūroro mō te mate Addison me te tairaru repe kōihi’ hei whakaahua he pēhea te pānga o te urupare, te panoni, ki ngā wheako o te ākonga. Hei tautoko i ngā tūroro ka pāngia e te mate Addison ā ngā rā e tū mai nei, e whakahau ana tēnei tūhuratanga kia haere he akoranga mō ngā kaimahi hauora taumata tuatahi, taumata tuarua, otirā mō ngā tākuta, ngā tapuhi mātanga me ngā tapuhi tērā pea ka āwhina i ngā taurimatanga tairaru repe kōihi. I huatautia e te hunga whai wāhi te whakawhanaketanga o tētahi rōpū tautoko mō te hunga e noho tahi ana me te mate Addison kia āhei ai rātou te tūhono me te tiri wheako. Mā tēnei āhua, i te taha o ngā kaupapa mātauranga ka taea pea te ārai i ngā tairaru repe kōihi, me ngā nohonga ki te hōhipera. E tūtohutia ana te whakawhanaketanga o tētahi aratohu taurima tūroro kia tino pai ai te tautoko me te whakaū i te māia ki roto i ngā kaimahi taurimatanga hauora, ō rātou tūroro me ō rātou whānau hoki. Ngā kupu matua te mate Addison, tairaru repe kōihi, te tapuhi, te akoranga tūroro, ngā wheako tūroro, te mātainga whakaaro wheako