“You don’t know what’s wrong with you”: An exploration of cancer-related experiences in people with an intellectual disability

Hdl Handle:
http://hdl.handle.net/10034/620074
Title:
“You don’t know what’s wrong with you”: An exploration of cancer-related experiences in people with an intellectual disability
Authors:
Flynn, Samantha; Hulbert-Williams, Nicholas J.; Hulbert-Williams, Lee; Bramwell, Ros ( 0000-0003-0392-8579 )
Abstract:
Objective: Few empirical studies have explored cancer-related experiences of people with an intellectual disability (ID), despite rising cancer incidence in this population. The present research aims to better understand the experiences of this population from multiple perspectives, generating theory and further research questions. Methods: Six people with ID and cancer, alongside twelve participants from their supportive network (including: family, social and healthcare professionals), were interviewed; transcripts were analysed using grounded theory. Results: People with ID were often overlooked within cancer consultations, excluded from conversations about their care and treatment-related decisions. Caregivers (family and paid) were relied upon to facilitate communication, understanding and supplement healthcare professional knowledge. Caregivers’ attempts to protect the patient from distress harmed communication further; our interviewees suggest that increased involvement and empowerment mediated cancer-related distress. Where healthcare professionals possessed good patient-centred skills, and additional support was offered, people with ID were more likely to engage meaningfully in their cancer-related experience. Conclusions: Interestingly, emergent concepts were consistent with general psycho-oncology literature, however incidence and severity of difficulty was substantially greater in this sample. This disparity warrants further exploration, with a need for intervention research to develop effective ways of supporting healthcare professionals in enhancing patient-centred skills with this population. In the clinical setting, patient involvement in healthcare decisions (despite problems associated with co-morbidity) is imperative to optimise engagement.
Affiliation:
University of Chester
Citation:
Flynn, S., Hulbert-Williams, N. J., Hulbert-Williams, L., & Bramwell, R. (2016). “You don't know what's wrong with you”: an exploration of cancer-related experiences in people with an intellectual disability. Psycho-Oncology, 25(10), 1198-1205. doi: 10.1002/pon.4211
Publisher:
Wiley
Journal:
Psycho-Oncology
Publication Date:
2-Aug-2016
URI:
http://hdl.handle.net/10034/620074
DOI:
10.1002/pon.4211
Additional Links:
http://onlinelibrary.wiley.com/doi/10.1002/pon.4211/abstract
Type:
Article
Language:
en
Description:
This is the peer reviewed version of the following article: Flynn, S., Hulbert-Williams, N., Hulbert-Williams, L., & Bramwell, R. (2016). “You don’t know what’s wrong with you”: An exploration of cancer-related experiences in people with an intellectual disability. Psycho-Oncology. DOI: 10.1002/pon.4211, which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1002/pon.4211/abstract. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving
EISSN:
1099-1611
Appears in Collections:
Psychology

Full metadata record

DC FieldValue Language
dc.contributor.authorFlynn, Samanthaen
dc.contributor.authorHulbert-Williams, Nicholas J.en
dc.contributor.authorHulbert-Williams, Leeen
dc.contributor.authorBramwell, Rosen
dc.date.accessioned2016-09-13T08:34:14Z-
dc.date.available2016-09-13T08:34:14Z-
dc.date.issued2016-08-02-
dc.identifier.citationFlynn, S., Hulbert-Williams, N. J., Hulbert-Williams, L., & Bramwell, R. (2016). “You don't know what's wrong with you”: an exploration of cancer-related experiences in people with an intellectual disability. Psycho-Oncology, 25(10), 1198-1205. doi: 10.1002/pon.4211en
dc.identifier.doi10.1002/pon.4211-
dc.identifier.urihttp://hdl.handle.net/10034/620074-
dc.descriptionThis is the peer reviewed version of the following article: Flynn, S., Hulbert-Williams, N., Hulbert-Williams, L., & Bramwell, R. (2016). “You don’t know what’s wrong with you”: An exploration of cancer-related experiences in people with an intellectual disability. Psycho-Oncology. DOI: 10.1002/pon.4211, which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1002/pon.4211/abstract. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archivingen
dc.description.abstractObjective: Few empirical studies have explored cancer-related experiences of people with an intellectual disability (ID), despite rising cancer incidence in this population. The present research aims to better understand the experiences of this population from multiple perspectives, generating theory and further research questions. Methods: Six people with ID and cancer, alongside twelve participants from their supportive network (including: family, social and healthcare professionals), were interviewed; transcripts were analysed using grounded theory. Results: People with ID were often overlooked within cancer consultations, excluded from conversations about their care and treatment-related decisions. Caregivers (family and paid) were relied upon to facilitate communication, understanding and supplement healthcare professional knowledge. Caregivers’ attempts to protect the patient from distress harmed communication further; our interviewees suggest that increased involvement and empowerment mediated cancer-related distress. Where healthcare professionals possessed good patient-centred skills, and additional support was offered, people with ID were more likely to engage meaningfully in their cancer-related experience. Conclusions: Interestingly, emergent concepts were consistent with general psycho-oncology literature, however incidence and severity of difficulty was substantially greater in this sample. This disparity warrants further exploration, with a need for intervention research to develop effective ways of supporting healthcare professionals in enhancing patient-centred skills with this population. In the clinical setting, patient involvement in healthcare decisions (despite problems associated with co-morbidity) is imperative to optimise engagement.en
dc.language.isoenen
dc.publisherWileyen
dc.relation.urlhttp://onlinelibrary.wiley.com/doi/10.1002/pon.4211/abstracten
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/en
dc.subjectCanceren
dc.subjectOncologyen
dc.subjectDiversityen
dc.subjectEqualityen
dc.subjectIntellectual disabilityen
dc.subjectPsychosocial experiencesen
dc.title“You don’t know what’s wrong with you”: An exploration of cancer-related experiences in people with an intellectual disabilityen
dc.typeArticleen
dc.identifier.eissn1099-1611-
dc.contributor.departmentUniversity of Chesteren
dc.identifier.journalPsycho-Oncologyen
dc.date.accepted2016-07-05-
or.grant.openaccessYesen
rioxxterms.funderUnfundeden
rioxxterms.identifier.projectUnfundeden
rioxxterms.versionAMen
rioxxterms.licenseref.startdate2017-08-02-
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