Author name: Emily Moore

Author: Emily is a doctoral candidate at the University of South Australia, supported by the Australian Pain Society (APS). Her research aims to investigate how to better support children with complex communication needs to self-report their pain.

An Introduction to pain in the disability sector

It can be a confronting realisation that one day we could, either temporarily or permanently, live with a disability. But as aptly said by the World Health Organization “disability is part of being human” (1).

Disability has a broad definition, but incorporates intellectual, physical, sensory, psychiatric, neurological, and learning disabilities (just to name a few). A person may be impacted by disability at any point across their lifespan which can fluctuate over time. Personal and environmental factors such as negative attitudes, accessibility to services, support, and community options may also influence their level of disability. Can your patient effectively access and participate in their environment? If not, then it can be considered a disability, whether it be temporary or permanent (1).

When thinking of the word ‘disability’, what do you picture in your mind?

Do you have any reflections of when you may have worked with a client living with a disability?

Many experiences and reflections of disability can impact how we work as clinicians. Depending on what you originally pictured when thinking of the word ‘disability’, when looking at the (limited, but growing!) published literature in pain, some words are unfortunately common to read: “barriers”, “under-recognised”, and “under-treated” (2,3,4).

Effective pain management is important for all our patients, regardless of disability. Yet effective pain assessment and management can be more complex for those living with disability. Emerging research reports higher prevalence rates of pain for most populations living with disability. Building awareness on the prevalence, impact, and experience of pain for those in the disability sector will help us to manage these patients more effectively.

Where should we start? There are many different conditions and situations that may lead to a person experiencing disability (1,5).

 In Australia, there are at least 4.4 million people living with a disability, an increase from the 4.3 million last measured in 2015 (2).  According to the Australian Bureau of Statistics, one in nine people aged 0-64 years and one in two people aged 65 and over have a disability (2019). Over 26.8% of people in Tasmania are living with a disability, higher than all other states and territories, followed by the Australian Capital Territory and South Australia (both 19.4%).

As the prevalence of disability grows in our country, so does the prevalence of those experiencing pain. When considering younger populations, recent research has shown 75% of children with cerebral palsy report regular ongoing pain (2). Additional research showed a greater proportion of young people with physical disabilities had chronic pain compared with able-bodied young people (27.2% versus 15.1%) (3).  Similar conclusions have also been made for young people with intellectual disabilities, who are reported to be at a higher risk of experiencing chronic pain (4).

In adult populations, chronic pain has been reported as a ‘moderate’ or ‘very big’ problem for 56% of those living with various disabilities (6). Many articles across various population groups also consider chronic pain to be a ‘very big’ problem, with reports of substantial levels of under diagnosed and under treated pain in these populations, particularly for those living with dementia (7) and after a stroke (8).

Ask yourself, how comfortable are you in managing patients with disability in your practice?

According to recent research in the United States, only 41% of surveyed physicians were very confident in their ability to provide equal quality care to their patients with a disability. In addition, only 56% strongly agreed that they would welcome disabled patients into their practices (9). According to Australian data, 9.6% of people aged 15 years and over have reported to experience discrimination in the previous 12 months because of their disability, up from 8.6% in 2015 (2). 

As clinicians, what can we start to do to address this trend of under-reported and under-treated pain?

Across the literature there are multiple recommendations often specific to certain populations, however, there is a common message. By recognizing the prevalence and underdiagnosis of pain in the sector and taking the time to reflect on our own perceptions and assessment strategies, we can then take the first steps in better managing and validating a person’s pain experience.

This then leads to the next question: how do we effectively assess and manage pain for people living with disability?

In following entries, we will explore pain assessment options for people and population groups with various disabilities. We will also identify resources to help you navigate pain assessment and management in the disability sector.

If this is an interest of yours, please do not hesitate to contact us at the APS to provide your own reflections and strategies while working in this sector.

Declaration: Emily Moore has nothing to declare.

References

1.         World Health Organization. Disability [Internet]. 2023. Available from: https://www.who.int/health-topics/disability#tab=tab_1

2.         Mckinnon CT, Meehan EM, Harvey AR, Antolovich GC, Morgan PE. Prevalence and characteristics of pain in children and young adults with cerebral palsy: a systematic review. Dev Med Child Neurol. 2019 Mar;61(3):305–14.

3.         de la Vega R, Groenewald C, Bromberg MH, Beals-Erickson SE, Palermo TM. Chronic pain prevalence and associated factors in adolescents with and without physical disabilities. Dev Med Child Neurol. 2018 Jun;60(6):596–601.

4.         McGuire BE, Daly P, Smyth F. Chronic pain in people with an intellectual disability: under-recognised and under-treated? J Intellect Disabil Res. 2010 Mar;54(3):240–5.

5. Australian Bureau of Statistics. Disability, Ageing and Carers, Australia: Summary of Findings [Internet]. 2019. Available from: https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release        

6.         Kinne S, Patrick DL, Doyle DL. Prevalence of Secondary Conditions Among People With Disabilities. Am J Public Health. 2004 Mar;94(3):443–5.

7.         Hadjistavropoulos T, Herr K, Prkachin KM, Craig KD, Gibson SJ, Lukas A, et al. Pain assessment in elderly adults with dementia. Lancet Neurol. 2014 Dec;13(12):1216–27.

8.         Benaim C, Froger J, Cazottes C, Gueben D, Porte M, Desnuelle C, et al. Use of the Faces Pain Scale by left and right hemispheric stroke patients. Benaim B Bieri, Boldingh, Bowers, Carroll, Cassisi, Chibnall, Dachy, Ekman, Ekman, Etcoff, Goodglass, Halligan, Herr, Herr, Hicks, Jones, Kaasalainen, Kaasalainen, Kong, Krulewitch, Lampl, Langhorne, Leijon, Mandal, Miro, Pautex, Pelissier, Pomeroy, Price, Rodriguez, Roy, Scherder, Scherder, Snels, Stern, Taylor, Van Langenberghe, Wanklyn, editor. Pain. 2007;128(1–2):52–8.

9.         Iezzoni LI, Rao SR, Ressalam J, Bolcic-Jankovic D, Agaronnik ND, Donelan K, et al. Physicians’ Perceptions Of People With Disability And Their Health Care: Study reports the results of a survey of physicians’ perceptions of people with disability. Health Aff (Millwood). 2021 Feb 1;40(2):297–306.