- Title
- Determining a person-centred model of care in severe asthma
- Creator
- Majellano, Eleanor C
- Relation
- University of Newcastle Research Higher Degree Thesis
- Resource Type
- thesis
- Date
- 2022
- Description
- Research Doctorate - Doctor of Philosophy (PhD)
- Description
- BACKGROUND: Asthma affects approximately 339 million people around the world. Most people with asthma achieve disease control using standard treatments and self-management. However, 3% to 10% of people with asthma have severe refractory disease. Severe asthma describes people whose asthma requires maximum therapy to prevent them from becoming uncontrolled or those who require high-dose therapy and remain uncontrolled. Severe asthma is heterogenous, underpinned by numerous phenotypes and widely influenced by various risk factors and comorbidities. Despite affecting only a small proportion of the asthma population, people with severe asthma are a cause of concern because they require specialised healthcare services, initiating high health costs. People with severe asthma experience poor physical and psychosocial functioning resulting in impaired quality of life (QoL). Given the significant impact of severe asthma on the lives of people with the disease, a person-centred approach to care is critical. The challenge of implementing a person-centred care (PCC) is complex and involves multiple stakeholders including patients, family carers and healthcare professionals. In recent years our understanding of the lived experience of people with severe asthma has increased. To make severe asthma care more person-centred, insights are not only required from the patient but also family carers and healthcare professionals’ perspectives. HCPs involved in general asthma management have previously identified barriers to optimal care. However, it is unknown to what extent these barriers remain concerning severe asthma. Disparities in various clinical settings and functions along with the broader healthcare systems must be considered, since they are likely to be a major determinant impacting PCC implementation. Carers are another important stakeholder in the care system. They play a central role in caring and supporting people with the disease. Although carers may find caregiving rewarding, this dedication can also impact their well-being. Disruptions in the quality of life (QoL) of carers may occur and interrupt the care process. People with severe asthma report poor QoL. Similarly, people with chronic obstructive pulmonary disease (COPD) report impaired QoL particularly during advanced stage of the disease. Due to deterioration in function or reduction of QoL people with severe asthma or COPD may need increased caregiving demands from their carers even more. Carers of people with COPD have reported deficits in their QoL. Comparative studies indicate that various chronic conditions present unique caring demands and therefore research need to determine the kind and level of burden experienced by carers from the overall aspect of caregiving. However, the perspectives’ of carers of people with severe asthma have not been explored. Additionally, the health status of severe asthma carers remains unknown compared to the general population or to a similar obstructive airway disease like COPD. Given that severe asthma and COPD share similar characteristics but differ greatly, the needs of carers and caregiving burden may also be different. There is a growing awareness of the necessity of including stakeholders in the development of health outcome measures. Stakeholder involvement is the key to mitigate and balance information needs, establish consensus and benefit from transparency. Due to the emergence of new knowledge about patients’ lived experiences of severe asthma, this research focused on two important stakeholder groups: carers and healthcare professionals. Greater attention is needed to understand various stakeholders’ perspectives to inform and develop a person-centred care (PCC) model for severe asthma. This thesis sought to determine the healthcare professionals’ and carers’ perspectives to inform an effective person-centred model of care in severe asthma. METHODS: Literature Review: Background on the approaches to the assessment of severe asthma. Electronic databases CINHAL, PubMed, Web of Science, Google Scholar, Wiley and Medline and reference lists were searched to identify international and Australian English language articles published between 2014 and 2019 exploring the barriers and strategies to assessing and managing severe asthma. Additionally, throughout the work a constant literature check was performed to capture recent advances in the area capturing global literatures. The HCPs’ and Carers’ Perspectives HCPs. A qualitative study explored and described HCPs’ perceived barriers and enablers in implementing optimal care. The identified determinants were mapped to the domains of a Theoretical Domains Framework (TDF). A multidisciplinary sample of 40 healthcare professionals participated in a single focus group (n = 7) and individual interviews (n = 33). Data analysis followed a hybrid approach wherein an inductive thematic and deductive content analysis technique was utilised. Carers: Exploring the Emotional Burden of Severe Asthma. A qualitative descriptive design was conducted to explore the challenges experienced by carers for people with severe asthma. Their unmet needs and strategies for adapting to their caring roles were also examined. A total of 20 semi-structured, face-to-face or telephone interviews were recorded and transcribed. Analysis followed an inductive thematic approach. Carers: A Comparative Study of the Well-being of Carers for People with Severe Asthma and People with COPD. An online cross-sectional survey was conducted using validated tools to assess the QoL and unmet needs of carers for people with severe asthma compared to carers for people with COPD. A total of 89 severe asthma carers and 48 COPD carers were deemed eligible to participate in the study. FINDINGS: Literature Review. The literature review revealed that barriers do not occur in isolation but rather interact and influence one another. Barriers were categorised into healthcare professional, patient and organisational factors. Identified strategies for overcoming barriers included a standardised approach and using assessment tools and guidelines. However, most literature has focused on general aspects of asthma management rather than severe asthma management. Less is understood about HCPs’ perspectives, values and attitudes towards optimal severe asthma care. The findings suggest the need to examine and explore severe asthma care HCPs’ perspectives regarding perceived barriers and enablers of personalised care. Barriers and Enablers to Personalised Care in Severe Asthma. The qualitative health professional study revealed three key multi-level barriers regarding HCPs’ perceived patient-, provider- and system-related factors. Key enablers were HCPs’ knowledge, systematic approaches to care, supportive environments for PCC, resources and referral strategies. Six predominant domains were identified using the TDF: belief about consequences, environmental context and resources, belief about capabilities, social/professional role and identity, goals and knowledge. The ‘belief about consequences’ domain mostly aligned with HCPs’ perceived barriers regarding patient-related factors. There was a consensus among HCPs that suboptimal adherence to treatments, patient expectations, beliefs and attitudes about treatments and poor knowledge about the disease were threats to implementing personalised care. Other dominant domains that were considered enablers included HCPs’ professional roles, beliefs about their capabilities and goals. Some domains that were considered barriers were also identified as enablers. The findings suggest that capitalising on the opportunities identified using a theory-based approach could be a powerful strategy for optimising and promoting personalised care in severe asthma clinics. Caregiving Burden in Severe Asthma. The study revealed three interrelated themes: (1) caring role impacts, capturing the multidimensional effects of caring on carers’ well-being; (2) unmet needs, focusing on carers’ desired support, including informational, biopsychosocial and professional needs; and (3) coping strategies, which were central to carers’ ways of managing their caring demands. The findings showed that carers experienced increased levels of emotional distress during sudden severe attacks. Tailored support services that are sensitive to carers’ needs may improve their QoL. Further, support programs and coping techniques should involve the carer and patient. Additionally, a carer-needs assessment tool specific to this carer population is warranted. Carers’ Quality of Life. The validated patient-reported outcome measures for characterising health statuses, psychological effects and work productivity revealed that QoL is impaired in carers for people with severe asthma to a similar degree as COPD carers. Carers for people with severe asthma wanted to understand the nature of the disease, consistent with previous exploratory findings. The findings suggest that carers for people with severe asthma should have similar levels of supports within the healthcare system as COPD carers. CONCLUSION: The current care model for severe asthma is fragmented. This thesis provides novel insights for understanding HCPs’ and carers’ perspectives to inform and develop a PCC model. The TDF used as a theoretical lens provided an in-depth understanding of the barriers and enablers to personalised care in clinical settings. This Thesis adds to the current literature highlighting the importance of carers and their role, including participating in shared decision-making, keeping patients safe and delivering severe asthma care. The outcomes of this Thesis should be considered in the management of the person with severe asthma in various clinical setting to promote and ensure a holistic person-centred approach to care that includes all relevant stakeholders.
- Subject
- severe asthma; healthcare professionals; enablers; implementation; carers; carer needs assessment tool (CSNAT); model of care; treatable traits; person-centred care; caregiving burden; theoretical domain framework; barriers; thesis by publication
- Identifier
- http://hdl.handle.net/1959.13/1465093
- Identifier
- uon:47205
- Rights
- Copyright 2022 Eleanor C Majellano
- Language
- eng
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