Diagnostic uncertainty in youth with chronic pain and their parents
Diagnostic uncertainty in youth with chronic pain and their parents
Diagnostic uncertainty—the perception of a lack of or incorrect label to explain symptoms—has been reported by parents of youth with chronic pain. This study was the first to examine diagnostic uncertainty in both youth with chronic pain and their parents using a qualitative methodology. Individual, face-to-face, semistructured interviews were conducted with 20 youth with chronic pain recruited from a pediatric chronic pain program. Independent interviews were also conducted with one of their parents. Interviews explored participants’ memories and perceptions around diagnosis. An in-depth thematic analysis revealed 4 themes: (1) The function of a diagnosis—Parents and youth struggled with the meaning of the diagnosis, needed further explanation for the pain, and perceived the ‘right’ diagnosis (ie, one that fit with their beliefs) as justification for the pain. (2) Haunted by something missing—Negative test results did not provide relief or counter the belief that something serious could have been missed by clinicians. (3) The search for an alternative diagnosis—A search persisted for the ‘right’ diagnosis, particularly when a nonpharmacological treatment plan was provided. (4) Mistrust in the medical system—Clinician communication and perceptions of clinicians’ uncertainty impacted parent and youth ‘buy in’ to the diagnosis. Findings suggest that many youth with chronic pain and their parents experience diagnostic uncertainty, which is integrally tied to their past experiences with the medical system. A greater understanding of diagnostic uncertainty may help tailor how clinicians deliver diagnoses to achieve buy in, increase understanding of pain and diagnosis, and improve treatment response.
1080-1090
Neville, Alexandra
e64765fd-eb96-4640-8c91-a858ac245cb4
Jordan, Abbie
3dd9c721-9bd1-4551-ad7c-75ecc11ef336
Beveridge, Jamie K.
1383daf0-dbe3-47a1-80d5-0b065c10d751
Pincus, Tamar
55388347-5d71-4fc0-9fd2-66fbba080e0c
Noel, Melanie
2140814f-fda0-4f1f-8c40-3d619af10bfa
1 September 2019
Neville, Alexandra
e64765fd-eb96-4640-8c91-a858ac245cb4
Jordan, Abbie
3dd9c721-9bd1-4551-ad7c-75ecc11ef336
Beveridge, Jamie K.
1383daf0-dbe3-47a1-80d5-0b065c10d751
Pincus, Tamar
55388347-5d71-4fc0-9fd2-66fbba080e0c
Noel, Melanie
2140814f-fda0-4f1f-8c40-3d619af10bfa
Neville, Alexandra, Jordan, Abbie, Beveridge, Jamie K., Pincus, Tamar and Noel, Melanie
(2019)
Diagnostic uncertainty in youth with chronic pain and their parents.
Journal of Pain, 20 (9), .
(doi:10.1016/j.jpain.2019.03.004).
Abstract
Diagnostic uncertainty—the perception of a lack of or incorrect label to explain symptoms—has been reported by parents of youth with chronic pain. This study was the first to examine diagnostic uncertainty in both youth with chronic pain and their parents using a qualitative methodology. Individual, face-to-face, semistructured interviews were conducted with 20 youth with chronic pain recruited from a pediatric chronic pain program. Independent interviews were also conducted with one of their parents. Interviews explored participants’ memories and perceptions around diagnosis. An in-depth thematic analysis revealed 4 themes: (1) The function of a diagnosis—Parents and youth struggled with the meaning of the diagnosis, needed further explanation for the pain, and perceived the ‘right’ diagnosis (ie, one that fit with their beliefs) as justification for the pain. (2) Haunted by something missing—Negative test results did not provide relief or counter the belief that something serious could have been missed by clinicians. (3) The search for an alternative diagnosis—A search persisted for the ‘right’ diagnosis, particularly when a nonpharmacological treatment plan was provided. (4) Mistrust in the medical system—Clinician communication and perceptions of clinicians’ uncertainty impacted parent and youth ‘buy in’ to the diagnosis. Findings suggest that many youth with chronic pain and their parents experience diagnostic uncertainty, which is integrally tied to their past experiences with the medical system. A greater understanding of diagnostic uncertainty may help tailor how clinicians deliver diagnoses to achieve buy in, increase understanding of pain and diagnosis, and improve treatment response.
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More information
Accepted/In Press date: 15 March 2019
e-pub ahead of print date: 21 March 2019
Published date: 1 September 2019
Additional Information:
© 2019 by the American Pain Society
Identifiers
Local EPrints ID: 469376
URI: http://eprints.soton.ac.uk/id/eprint/469376
ISSN: 1526-5900
PURE UUID: 7c597534-bd05-4666-a9ea-4af9199beb72
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Date deposited: 14 Sep 2022 16:39
Last modified: 17 Mar 2024 04:11
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Author:
Alexandra Neville
Author:
Abbie Jordan
Author:
Jamie K. Beveridge
Author:
Tamar Pincus
Author:
Melanie Noel
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