title: Economic hardship associated with managing chronic illness: a qualitative inquiry.
abstract: BACKGROUND
  Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness.
  
  
  METHODS
  Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data.
  
  
  RESULTS
  The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses.
  
  
  CONCLUSIONS
  This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity of a critical analysis of health, social and welfare policies to identify cross-sectoral strategies to alleviate such hardship and improve the affordability of managing chronic conditions. In a climate of global economic instability, research into the economic impact of chronic illness on individuals' health and well-being and their disease management capacity, such as this study, provides timely evidence to inform policy development.
authors.affiliation: The Australian Primary Health Care Research Institute, The College of Medicine, Biology and Environment, The Australian National University, Building 62, Mills Rd, Canberra, ACT 0200, Australia. yjeon@usyd.edu.au
authors.forename: Yun-Hee
authors.initials: YH
authors.lastname: Jeon
authors.forename: Beverley
authors.initials: B
authors.lastname: Essue
authors.forename: Stephen
authors.initials: S
authors.lastname: Jan
authors.forename: Robert
authors.initials: R
authors.lastname: Wells
authors.forename: Judith A
authors.initials: JA
authors.lastname: Whitworth
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D002908:Chronic Disease / Q000191:economics* / Q000628:therapy; D048909:Diabetes Complications / Q000191:economics / Q000628:therapy; D005260:Female; D017048:Health Care Costs; D019538:Health Care Surveys; D006297:Health Services Accessibility / Q000191:economics; D006333:Heart Failure / Q000191:economics / Q000628:therapy; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D029424:Pulmonary Disease, Chronic Obstructive / Q000191:economics / Q000628:therapy; D036301:Qualitative Research; D011795:Surveys and Questionnaires