(MPH Dissertation) Silas Thielmann
Abstract
Background
Bronchiectasis is a chronic lung disease caused by infection associated with socioeconomic deprivation [1-10] and limited access to services [2, 3, 6, 11] that may be preventable in up to 95 per cent [11] of cases. Bronchiectasis is a neglected respiratory diseases. It is one of the most inequitable conditions in Aotearoa that disproportionately impacts Māori and Pacific populations. These groups are significantly overrepresented in bronchiectasis associated hospital admissions and premature deaths [12].
Methods
There has been limited enquiry in particular in relation to tangata whenua experiences of engaging with treatment services [1, 3, 13]. This prompted the question: “What are whānau experiences of living with bronchiectasis and their journey through the health system?” To explore this question, eight qualitative, unstructured interviews were conducted with bronchiectasis patients and in some cases together with their partners. Interviews were informed by a critical theory research framework. Māori, Pacific and western social and health models with holistic perspectives informed the interview planning to ensure all relevant aspects were considered.
Results
Analysis led to the identification of four major themes. In theme 1 “Learning to live with the invisible disease” participants described the broad psychosocial impact of bronchiectasis affecting every area of their lives including financial impacts, and the shame and embarrassment associated with communicating their experience of this invisible disease with others. Theme 2 “Working it out” summarises personal efforts to become and remain well, regain control and live fulfilling lives. In theme 3 “Reliance on the system” experiences of the journey of diagnosis and treatment as well as healthcare relationships are summarised. Theme 4 “Forced to find the middle ground” summarises the identified compromises of patients and families associated with bronchiectasis.
Conclusion
These results revealed the compounding disadvantage in lower socio-economic groups related to time-poverty and financial disadvantage. A lack of 'continuity of care', from delayed diagnosis, referrals and compromised treatment was identified. Whereas socioeconomic advantages supported self-management such as investment in home improvement.
Structural and implicit bias in the health-system that serve majority groups in New Zealanders but disadvantage other groups, particularly lower socioeconomic and ethnic minority groups were identified and are discussed. It became evident that the health and social systems have significant cross-cultural communication gaps and institutional bias needing to be addressed.
These findings agree with other research that highlights institutional racism and supports the need for holistic care informed by biculturalism and multiculturalism to be fully integrated in the health system.
Aim
Whakangā seeks to improve systems and outcomes for patients and whānau by identifying barriers and highlighting areas of resilience and tailoring systems for the affected groups. To achieve this goal the researcher makes recommendations for future research, improvement to public awareness, health system and education improvement including healthy public policy considerations based on the research findings.