"It's like being on a roller coaster": the burden of caring for people with severe asthma.

Autor:	Majellano EC; National Health and Medical Research Council Centre for Research Excellence in Severe Asthma and The Priority Research Centre for Health Lungs, The University of Newcastle, Newcastle, NSW, Australia.; School of Nursing and Midwifery, The University of Newcastle, Newcastle, NSW, Australia., Clark VL; National Health and Medical Research Council Centre for Research Excellence in Severe Asthma and The Priority Research Centre for Health Lungs, The University of Newcastle, Newcastle, NSW, Australia.; School of Nursing and Midwifery, The University of Newcastle, Newcastle, NSW, Australia., Foster JM; Woolcock Institute of Medical Research and The University of Sydney, Sydney, NSW, Australia., Gibson PG; National Health and Medical Research Council Centre for Research Excellence in Severe Asthma and The Priority Research Centre for Health Lungs, The University of Newcastle, Newcastle, NSW, Australia.; Department of Respiratory and Sleep Medicine, John Hunter Hospital, Hunter Medical Research Institute, Newcastle, NSW, Australia., McDonald VM; National Health and Medical Research Council Centre for Research Excellence in Severe Asthma and The Priority Research Centre for Health Lungs, The University of Newcastle, Newcastle, NSW, Australia.; School of Nursing and Midwifery, The University of Newcastle, Newcastle, NSW, Australia.; Department of Respiratory and Sleep Medicine, John Hunter Hospital, Hunter Medical Research Institute, Newcastle, NSW, Australia.
Jazyk:	angličtina
Zdroj:	ERJ open research [ERJ Open Res] 2021 Apr 12; Vol. 7 (2). Date of Electronic Publication: 2021 Apr 12 (Print Publication: 2021).
DOI:	10.1183/23120541.00812-2020
Abstrakt:	Introduction: Family carers and significant others play a fundamental role in the well-being of people with severe asthma. This study aimed to investigate the challenges faced by family carers/significant others of people with severe asthma, to understand if there is an unmet need and to explore coping strategies. Methods: Carers of people with severe asthma were invited to participate in a face-to-face or telephone interview. Semi-structured interviews were conducted until reaching data saturation of themes. The 20 interviews were recorded and transcribed, and analysis of data followed an inductive thematic approach. Results: We report three overarching emergent themes: 1) "Caring role impacts", which centred around the negative and positive impacts of caring on carers' well-being; 2) "Unmet needs", which encapsulated the support needs participants desired and were categorised into unmet information, biopsychosocial needs and carers' involvement in decision-making; and 3) "Coping strategies", which were central to the range of tools and positive approaches in dealing with caring demands. Discussion: Caring for someone with severe asthma can be burdensome and may negatively affect the physical and psychosocial health of the carer. Various coping strategies are used to manage the demands of these caring roles. Carers of people with severe asthma expressed a need for informational, biopsychosocial and involvement in care decision-making support . Tailored support services that are sensitive to their needs may improve their quality of life and encourage healthcare providers to value and acknowledge the important contribution that carers make. Competing Interests: Conflict of interest: E.C. Majellano has nothing to disclose. Conflict of interest: V.L. Clark reports a fellowship from the National Health and Medical Research Council during the conduct of the study, and a $1400 grant to cover research-related costs received for providing education to AstraZeneca staff and symposium, outside the submitted work. Conflict of interest: J.M. Foster reports an unconditional research grant, and steering committee, independent medical education, speaker fee and travel costs from AstraZeneca; personal fees for independent medical education from Boehringer Ingelheim; and personal fees for independent medical education and a speaker fee from GlaxoSmithKline, all outside the submitted work. Conflict of interest: P.G. Gibson reports speaker's fees from AstraZeneca, GlaxoSmithKline and Novartis, and grants from AstraZeneca and GlaxoSmithKline, outside the submitted work. Conflict of interest: V.M. McDonald reports grants from the National Health and Medical Research Council during the conduct of the study and outside the submitted work. (Copyright ©The authors 2021.)
Databáze:	MEDLINE
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