title: Rethinking how we understand individual healthcare needs for people living with long-term conditions: a qualitative study.
abstract: It has been suggested that we need to 'Think Differently' about how we organise care for people with long-term conditions. Current approaches prioritise reducing population disease burden, meaning health need is defined predominantly in terms of disease status, or even risk of disease. However, the result is care which overburdens some individuals. The World Health Organisation has described the need to view health as a 'resource for living' and not an end in itself. This study considers whether this view of health offers an alternative view of healthcare need in people living with long-term conditions. We know that chronic disease can be disruptive for some people; but not all. Our research question asked: Why do people experience long-term conditions differently, and what are the implications for understanding healthcare need? Our phenomenographic study involved qualitative interviews with 24 people living with at least one of the three conditions (diabetes, depression and chronic pain) and explored resources for and demands on daily living. Interviews all took place during 2012 and 2013. A narrative form analysis identified three patterns of illness experience (Gliding Swan, Stormy Seas and Stuck Adrift). Narrative content analysis revealed four factors explaining the variation: personalising care, existence of meaningful anchors, partnership and excess demands. We thus propose three new categories of healthcare need described by a consideration of health as a resource for living: Resilient, Vulnerable and Disconnected. We discuss how the emerging findings may offer scope to develop new needs assessment and patient-reported outcome measure tools. And so, offer a different way of thinking about the organisation for care for people with long-term conditions.
authors.affiliation: Department of Health Services Research, University of Liverpool, Liverpool, UK.
authors.forename: Joanne
authors.initials: J
authors.lastname: Reeve
authors.affiliation: Department of Health Services Research, University of Liverpool, Liverpool, UK.
authors.forename: Lucy
authors.initials: L
authors.lastname: Cooper
mesh_terms: D000328:Adult; D000368:Aged; D002908:Chronic Disease / Q000628:therapy*; D017281:Cost of Illness; D006301:Health Services Needs and Demand / Q000458:organization & administration; D006801:Humans; D008134:Long-Term Care / Q000458:organization & administration / Q000592:standards; D008297:Male; D008875:Middle Aged; D033262:Narration; D036301:Qualitative Research
keywords: health as a resource for living; healthcare need; long-term conditions; personalised care