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

Abstract

IntroductionFamily 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.MethodsCarers 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, transcribed and analysis of data followed an inductive thematic approach.ResultsWe report three overarching emergent themes:(1) “Caring role impacts”: centred around the negative and positive impacts of caring on carers' well-being; (2) “Unmet needs”: encapsulated the support needs participants desired and were categorised into unmet: informational, biopsychosocial needs, and carers' involvement in decision making; (3) “Coping strategies”: central to the range of tools and positive approaches in dealing with caring demands.DiscussionCaring 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 information, 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.

The needs and well‐being of severe asthma and COPD carers: A cross‐sectional study

“…These results are comparable to those reported by Farquhar et al, 37 highlighting COPD carer support needs. Our findings also showed that a higher proportion of severe asthma carers desired a better understanding of the nature of illness, consistent with the findings of Majellano et al 23 …”

“…To our knowledge, this is the first study to evaluate QoL of severe asthma carers and indeed the first to compare the impacts in severe asthma compared to COPD. A previous study by the present authors evaluated the burden of caring for people with severe asthma using a qualitative descriptive methodology 23 . While this was the first study to report on severe asthma carer burden, the sample was small and only included one disease population.…”

Moving towards a Treatable Traits model of care for the management of obstructive airways diseases

“…This requires focusing on certain key traits that can be easily identified and managed in this setting [66]. Finally, simplification of prescribed treatment and of information provided to patients and carers following a TT assessment has the potential to reduce the carer burden and facilitate focus on the most relevant specific TTs [68].…”

Using a knowledge translation framework to identify health care professionals’ perceived barriers and enablers for personalised severe asthma care

“…Participants also recognised the impact that severe asthma has on family carers particularly when dealing with sudden severe attacks, but felt they were limited in providing care pathways. A needs assessment designed for carers of people with severe asthma is warranted to ensure their critical needs are met [ 67 ].…”