“You don't know what's wrong with you”: an exploration of cancer‐related experiences in people with an intellectual disability
Open accessAbstract
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 12 participants from their supportive network (including family and social and health care professionals), were interviewed; transcripts were analyzed using grounded theory. Results: People with ID were often overlooked within cancer consultations and excluded from conversations about their care and treatment‐related decisions. Caregivers (family and paid) were relied upon to facilitate communication and understanding and supplement health care 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 health care professionals possessed good patient‐centered 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 health care professionals in enhancing patient‐centered skills with this population. In the clinical setting, patient involvement in health care decisions (despite problems associated with comorbidity) is imperative to optimize engagement.
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Carers do not always allow the service user to speak for themselves or carers might try to protect them from perceived harmful communication, thereby preventing service users from exerting control over their own healthcare needs.
“Carers do not always allow the service user to speak for themselves or carers might try to protect them from perceived harmful communication,28 thereby preventing service users from exerting control over their own healthcare needs.32”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [28]
Some healthcare providers may lack understanding, knowledge, and awareness about how to support people with autism and intellectual disabilities, including how to make appropriate reasonable adjustments.
“Some healthcare providers may lack understanding, knowledge, and awareness about to how to support people with autism and intellectual disabilities,28–30 including how to make appropriate reasonable adjustments.29”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [28]
They feel empowered when they are involved in the decision-making process and gain a better understanding of their treatment and diagnosis.
“They feel empowered when they are involved in the decision-making process and gain a better understanding of their treatment and diagnosis.28,66”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [28]
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- Authors
- Flynn, S., Hulbert‐Williams, N. J., Hulbert‐Williams, L., & Bramwell, R.
- Affiliations
- University of Chester (GB)
- Chester Research Unit for the Psychology of Health, Department of Psychology University of Chester Chester Cheshire UK
- Corresponding author
- Flynn, Samantha
- Venue
- Psycho-Oncology
- Publisher
- Wiley
- Published
- 2016-08-02
- Volume
- 25
- Issue
- 10
- Pages
- 1198-1205
- ISSN
- 1057-9249 (ISSN-L)
- 1099-1611
- OpenAlex
- W2470314249
- Cited by
- 37
- References
- 45
- Citations by year
- 2026: 8 · 2025: 9 · 2023: 3 · 2022: 5 · 2021: 4 · 2020: 2 · 2019: 2 · 2018: 2 · 2017: 1 · 2016: 1
- FWCI
- 3.73
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Psycho-Oncology (publishedVersion)
- PubMed (publishedVersion)
- Edge Hill University Research Information Repository (Edge Hill University) (publishedVersion, other-oa)
- ChesterRep (University of Chester) (submittedVersion, cc-by-nc-nd)
- ChesterRep (University of Chester) (submittedVersion)
- Warwick Research Archive Portal (University of Warwick) (submittedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- intellectual disability, cancer, lived experience, patient-centered care, caregiver involvement, patient empowerment, patient decision-making, healthcare communication, cancer-related distress, family caregivers
- MeSH terms
- Adult, Communication, Female, Health Personnel, Humans, Male, Intellectual Disability, Neoplasms, Professional-Family Relations, Social Support, Stress, Psychological, Caregivers, Qualitative Research, Grounded Theory
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