Non-disclosure of chronic kidney disease in primary care and the limits of instrumental rationality in chronic illness self-management.
Early detection of long term conditions is predicated on assumptions that lifestyle changes and medications can be used to reduce or manage the risk of condition progression. However, ambiguity remains about the nature and place of diagnostic disclosure to people in newly recognised or asymptomatic 'pre' conditions such as early stage chronic kidney disease (CKD). The disclosure of a diagnosis is relevant to instigating strategies which rely on actively engaging patients as self-managers of their own care. Whilst primary care routinely records a diagnosis of early stage CKD, little is known about how patients learn about the fact that they have CKD or how they respond to this. This study aimed to explore patients' experiences of disclosure of CKD in primary care settings. A nested qualitative study of participants recruited to a trial of an intervention for CKD patients in Greater Manchester, UK was undertaken. A purposive sample of 26 patients, with a mean age of 72 years (range 59-89, median 71), were interviewed during 2012. Interview transcripts were analysed using constant comparative techniques. Narrative accounts reflected limited or partial disclosure of CKD; often cast in vague terms as "nothing to worry about". How patients described themselves in terms of participation and their tendencies towards 'active' or 'passive' involvement in consultations emerged as important components of narratives around disclosure. The findings illuminate the ways in which diagnosis is oriented in a context where it is possible to meet the requirements for remuneration under a pay for performance system of primary care, whilst apparently not disclosing a label or a diagnosis to patients. This challenges the presumptions inherent in wider health policy objectives that are increasingly built on the notion of responsible patients and the ethos of the active support of self-management for pre-conditions.
NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre, Institute of Population Health, Williamson Building, The University of Manchester, Oxford Road, Manchester M13 9PL, UK. Electronic address: gavin.daker-white@manchester.ac.uk.
Gavin
G
Daker-White
NIHR Collaboration for Leadership in Applied Health Research (CLAHRC) Wessex, Faculty of Health Sciences, University of Southampton, Highfield, Southampton SO17 1BJ, UK. Electronic address: A.E.Rogers@soton.ac.uk.
Anne
A
Rogers
NIHR Collaboration for Leadership in Applied Health Research (CLAHRC) Wessex, Faculty of Health Sciences, University of Southampton, Highfield, Southampton SO17 1BJ, UK. Electronic address: A.Kennedy@soton.ac.uk.
Anne
A
Kennedy
NIHR Collaboration for Leadership in Applied Health Research (CLAHRC) Greater Manchester, Centre for Primary Care, Institute of Population Health, Williamson Building, The University of Manchester, Oxford Road, Manchester M13 9PL, UK. Electronic address: Tom.blakeman@manchester.ac.uk.
Thomas
T
Blakeman
NIHR Collaboration for Leadership in Applied Health Research (CLAHRC) Greater Manchester, Centre for Primary Care, Institute of Population Health, Williamson Building, The University of Manchester, Oxford Road, Manchester M13 9PL, UK. Electronic address: Christian.blickem@manchester.ac.uk.
Christian
C
Blickem
NIHR Collaboration for Leadership in Applied Health Research (CLAHRC) West Midlands, Primary Care & Health Sciences, Keele University, Keele, Staffordshire ST5 5BG, UK. Electronic address: c.a.chew-graham@keele.ac.uk.
Carolyn
C
Chew-Graham
D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D001364:Awareness; D003717:Denial, Psychological; D030881:Disclosure; D004739:England; D005260:Female; D006801:Humans; D007676:Kidney Failure, Chronic / Q000175:diagnosis / Q000191:economics / Q000523:psychology* / Q000628:therapy*; D008019:Life Style; D008297:Male; D008875:Middle Aged; D011320:Primary Health Care / Q000191:economics; D036301:Qualitative Research; D012052:Reimbursement, Incentive / Q000191:economics; D060926:Remuneration; D012648:Self Care / Q000191:economics / Q000523:psychology*
Chronic kidney disease; Diagnosis; Doctor–patient communication; Qualitative study; Self-management; UK