Exploring experiences and understandings of pain in adults with intellectual disabilities

Abstract

Conversations regarding pain with adults with ID are a real challenge; health-care staff need to think carefully about the questions they ask. Possessing verbal skills cannot be taken as an indication that pain will be communicated.

Pain underreporting associated with profound intellectual disability in emergency departments

“…To the best of our knowledge, this is the first study to examine the reasons for hospital ED consultation specifically among persons with PID and to show that in most cases, this is due to somatic problems. This finding is consistent with some previous studies of the broad population of people with ID (McDonald 1985;Whitaker & Read 2006;Findlay et al 2014), although other reports have suggested that psychiatric problems account for a greater proportion of hospital consultations and admissions among people with ID (Balogh et al 2005;Lunsky & Balogh 2010;Lunsky et al 2012c;Tint & Lunsky 2015). In this respect, it is worth noting that in our study group, there were no ED consultations due to attempted suicide or, apparently, to stressful life events, these being circumstances that appear to become more common as intellectual ability increases (Lunsky & Elserafi 2011b;Lunsky et al 2012d).…”

“…The heightened communicative limitations of persons with PID will directly affect their ability to conceptualise their health complaints and to describe them in a way that can be understood by others. This is particularly relevant in relation to pain (Findlay et al 2014), both acute and chronic (McGuire & Kennedy 2013), the correct identification of which in this population continues to pose a health care challenge, despite the efforts made in recent years (De Knegt et al 2013). In this meta-analyses, De Knegt et al examined the association between any observable behaviour and the pain experienced by people with ID over a 20-year period of data recollection and stressed the difficulty of identifying these health complaints accurately.…”

Agency, social and healthcare supports for adults with intellectual disability at the end of life in out‐of‐home, non‐institutional community residences in Western nations: A literature review

“…Healthcare providers’ lack of experience working with individuals with intellectual disabilities can negatively impact medical care and contribute to poor communication (Bradbury‐Jones et al., ; Cartlidge & Read, ; Cross, Cameron, Marsh, & Tuffrey‐Wijne, ; Dunkley & Sales, ; Gates, ; Kirkendall et al., ; Krahn & Drum, ; Marks et al., ; McCarron et al., ; Ryan et al., ; Stein, ; Todd & Read, ; Tuffrey‐Wijne, Whelton, Curfs, & Hollins, ; Tuffrey‐Wijne, Bernal, & Hollins, ; Tuffrey‐Wijne, Bernal, Hubert et al., ; Webber, Bowers, & Bigby, ). Communication limitations include speech impairments, difficulty articulating verbally and being unable to accurately describe the severity or type of pain (Findlay, Williams, & Scior, ; Stein, ; Tuffrey‐Wijne & McEnhill, ; Ward, Nichols, & Freedman, ). Poor communication negatively impacts medical care by increasing the likelihood of misdiagnosis, poor pain and symptom assessments, over or under treatment and negative rapport with patients (Friedman et al., ; Tuffrey‐Wijne et al., , ).…”

“…articulating verbally and being unable to accurately describe the severity or type of pain (Findlay, Williams, & Scior, 2014;Stein, 2008;Tuffrey-Wijne & McEnhill, 2008;Ward, Nichols, & Freedman, 2010).…”

Self-Reporting Tool On Pain in People with Intellectual Disabilities (STOP-ID!): a Usability Study

“…People with intellectual disabilities could have difficulties in communicating about health-related information, both in understanding what is being asked and in having a way to respond (Mastebroek, Naaldenberg, Lagro-Janssen, & van Schrojenstein Lantman de Valk, 2014). Additional factors such as fear of others' reactions and not wanting to waste others' time can result in hiding pain instead of self-reporting pain (Beacroft & Dodd, 2010;Findlay, Williams, & Scior, 2014). In addition, the display of atypical pain behaviors such as aggression and agitation could hamper caregivers in recognizing and asking about pain (Beacroft & Dodd, 2010;Bodfish, Harper, Deacon, Deacon, & Symons, 2006;De Knegt, Pieper, et al, 2013).…”