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

• DOI: 10.1002/pon.4211
• Publication Date: 2016-07-08T20:57:07Z
• Authors: Samantha Flynn; Nicholas J. Hulbe...; Lee Hulbert‐Williams; Ros Bramwell
• Keywords: Adult; Male; Health Personnel; Intellectual disability; Experimental and Cognitive Psychology; Equality; 03 medical and health sciences; 0302 clinical medicine; Professional-Family Relations; Intellectual Disability; Neoplasms; Psychosocial experiences; Humans; Qualitative Research; Cancer; 360; Diversity; Communication; Social Support; 3. Good health; Psychiatry and Mental health; Oncology; Caregivers; Grounded Theory; Female; Stress, Psychological

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 population from multiple perspectives, generating theory and further questions.Six ID cancer, alongside 12 participants their supportive network (including family social health care professionals), were interviewed; transcripts analyzed using grounded theory.People often overlooked within consultations excluded conversations about treatment-related decisions. Caregivers (family paid) relied upon facilitate communication understanding supplement professional knowledge. Caregivers' attempts protect patient distress harmed further; our interviewees suggest that increased involvement empowerment mediated distress. Where professionals possessed good patient-centered skills, additional support was offered, more likely engage meaningfully experience.Interestingly, emergent concepts consistent general psycho-oncology literature; however, severity difficulty substantially greater sample. This disparity warrants exploration, a need for intervention develop effective ways supporting enhancing skills In clinical setting, decisions (despite problems associated comorbidity) is imperative optimize engagement.