Communication disability in low- and middle-income countries: A call to action

The following manuscript has been accepted for publication:

Marshall, J. E., Wylie, K., McLeod, S., Barrett, H., McAllister, L., Atherton, M., Hettiarachchi, S., Owusu, N. A. (2024, in press May) Communication disability in low- and middle-income countries: A call to action. BMJ Global Health.

Summary: 

• "Communication disability is a common but under-reported and often neglected part of health, rehabilitation and disability services, despite communication being a human right.
• Communication disability has far-reaching impacts throughout life.
• Innovation is required in contexts where services for people with communication disability are limited - particularly low and middle-income countries.
• Local and national governments, funders/commissioners, communication disability experts, universities, non-government organisations, communities, health, social care, rehabilitation services and education sectors all have a role to play in putting communication disability on the global disability/ (re)habilitation agenda.

This paper took many years to write and get published - mostly because it is not easy to distill important research with clarity. I worked on a version while at Manchester Metropolitan University last year. I am very glad it has been accepted and thank Julie Marshall and Karen Wylie for leading this paper.

This work speaks to the World Health Organization's Global report on health equity for persons with disabilities https://www.who.int/publications/i/item/9789240063600

World Health Organization: Communication for Health (C4H) 2024-2026

This week at the 74th meeting of the WHO Regional Committee Meeting (RCM74) for the Western Pacific, States Parties discussed and voted on the Draft Regional Action Framework Communication for Health (C4H). C4H was established in 2019 as a technical programme supporting Member States in the Region. 

WHO (2023) Regional Action Framework on Communication for Health: A vision for using communication to improve public health in the Western Pacific Region (WPR/RC74/7 page 7 ANNEX) https://cdn.who.int/media/docs/default-source/wpro---documents/regional-committee/session-74/wpr-rc74-agenda-13-communication-for-health-annex.pdf?sfvrsn=47febfd6_1

C4H was introduced by Ms Olivia Lawe-Davies, Communications Manager and acting Executive Officer, Regional Director’s Office, WHO Regional Office for the Western Pacific. 

"C4H refers to a set of principles and practices that help to ensure communications are designed to inform and change attitudes and behaviours in ways that can support the achievement of defined public health outcomes at the individual, community and societal levels." (WHO, 2023, p. 6) 

Dr Zsuzsanna Jakab, WHO Acting Regional Director for the Western Pacific stated in April 2023 “C4H recognizes that health communication can play a vital role alongside other public health interventions to extend lives and improve public health outcomes at individual, community and societal levels.” (WHO, 2023, p. 7). 

"C4H is based on six principles: informed by data and theory; measurable; planned; audience- and peoplecentred; collaborative; and targeted. Application of the C4H approach requires a series of steps to first understand, then plan, develop, test and implement a communication programme or campaign, before evaluating and identifying lessons." WPR/RC74/7 page 11

The following C4H video was played: https://www.youtube.com/watch?v=UdamEZj9I_w&list=PLA7dYQkD0Btrdj8ajTfUJYJ3xW0vrqWD1&index=1

During this week I have had conversations with many people to discuss C4H, the health workforce, the importance of communication for all, and how speech-language pathologists and other communication professionals can support WHO's committment to C4H for ALL including:

• Dr Saia Ma’u Piukala, the incoming WHO Regional Director for the Western Pacific

Dr Saia Ma’u Piukala, incoming Regional Director

• Ms Anna Biernat, Communications Officer, WHO Western Pacific Regional Office, Philippines and other members of her office who created the C4H initiative
  

• 

  Sharynne McLeod with Eloise Adsett and Anna Biernat, Communications Officer, WHO

  
  
• Dr Angela Pratt, WHO Representative Office, Viet Nam
• Ms Janet Camacho, Deputy Director of Operations and Programs, Pacific Island Health Officers Association, Hawai'i along with colleagues from Guam, Mariana Islands and Palau
• Dr Revite Kirition, Director General of Health, Kiribati
• Ms Carrie Laurenson and Ms Eseese Sina Georgina Fa-aiuga, Samoa
• Hon Ratu Atonio Rabici Lalabalavu, Minister for Health and Medical Services, Fiji
  
• Dr Miranda Smith, Senior Global Health Officer, Office of Asia and the Pacific, U. S. Department of Health and Human Services, USA
• Ms Ines Ferrer, Scientific Mission Officer, Ambassade De France aux Philippines et en Micronesie
  
• Mr Blair Exell, Deputy Secretary, Health Strategy, First Nations and Sport, Department of Health and Aged Care, Australian Government
  
• Ms Fleur Davies, Assistant Secretary, Multilateral Health Branch, Department of Foreign Affairs and Trade, Australian Government
• Mr Andreas Anargyros, Assistant Director, International Strategic Branch, Department of Health and Aged Care
  

• 

  Discussing C4H with colleagues from Hawai'i, Mariana Islands and Guam

  
  

  

  Ms Carrie Laurenson and Ms Eseese Sina Georgina Fa-aiuga, Samoa
  

  
  

  

  Dr Jackie Leung Ching-kan, Hong Kong China
  

  
  

  

  Dr Revite Kirition, Director General of Health, Kiribati

  
  

  

  Dr Angela Pratt, WHO Representative Office, Viet Nam

  
  

  

  Ms Fleur Davies, Department of Foreign Affairs and Trade,
  Australian Government

Member States who provided interventions were: Vanuatu, Fiji, Mongolia, Cook Islands, Samoa, Marshall Islands, New Zealand, Australia, Tuvalu, Solomon Islands, Philippines, Brunei Darusalam, Malaysia, Cambodia, Vietnam, USA, China, Hong Kong China, US Territories, Japan, Papula New Guinea, Palau, Kitibati, Korea and two Non State Actors. 

In my submitted intervention on behalf of the International Association of Communication Sciences and Disorders (IALP), I commend the WHO Regional Committee for the Western Pacific for the C4H initiative and the Disability-inclusive health services toolkit: A resource for health facilities in the Western Pacific Region https://www.who.int/westernpacific/publications-detail/9789290618928. I commended WHO for including communication disability, "People Who Have Trouble Speaking" (p. 67) AND "People With Hearing Impairment" (p. 64) in the section on "Practical strategies for communicating inclusive health information" and also offered recommendations for expanding understanding about communication disability and strategies for communicating inclusive health information based on the following work we have undertaken. The intervention profiles the work published in our two special issues of the International Journal of Speech-Language Pathology addressing the United Nations' agendas: 

• Communication is a Human Right – 2018 - vol 20(1) - https://www.tandfonline.com/toc/iasl20/20/1
• Communication, Swallowing and the Sustainable Development Goals – 2023 vol 25(1) - https://www.tandfonline.com/toc/iasl20/25/1 

and new book published by IALP, in which many of our team are authors: 

• Levey, S. & Enderby, P. (Eds.). (2023). The unserved: Addressing the needs of those with communication disorders. J&R Press. https://ialpasoc.info/publication/
  

I also shared the work of our Early Childhood Interdisciplinary Research Group to listen to children:

• Submission to the United Nations’ HR75 Youth Declaration https://earlychildhoodresearch.csu.domains/wp-content/uploads/2023/08/Submission-to-the-United-Nations-HR75-Youth-Declaration-1.pdf

Here is information about the development of C4H

WHO (2023) C4H Meeting report (April 2023): https://www.who.int/publications-detail-redirect/RS-2023-GE-05-PHL-hybrid

People with disability in Australia 2022 - Statistics about communication disability

IMPORTANT DATA FROM:
 

Australian Institute of Health and Welfare (2022) People with disability in Australia 2022, catalogue number DIS 72, AIHW, Australian Government.

https://www.aihw.gov.au/getmedia/3bf8f692-dbe7-4c98-94e0-03c6ada72749/aihw-dis-72-people-with-disability-in-australia-2022.pdf.aspx?inline=true

Australian Bureau of Statistics’ (ABS) 2018 Survey of Disability, Ageing and Carers (SDAC).

"Nearly one-third (32%) of people with disability – about 1.4 million or 5.7% of the Australian population – have severe or profound disability. This means sometimes or always needing help with daily self-care, mobility or communication activities, having difficulty understanding or being understood by family or friends, or communicating more easily using sign language or other non-spoken forms of communication (ABS 2019a)." (p. 26)

Of people with disability living in households who need help with at least one activity: • the need for help with cognitive or emotional tasks decreases with age (79% or 362,000 of those aged under 25, 45% or 422,000 of those aged 25–64, and 19% or 208,000 of those aged 65 and over) • those aged under 25 are more likely (41% or 187,000) to need help with oral communication than those aged 25–64 (5.9% or 55,000) or 65 and over (5.8% or 64,000) (p. 36)

Of the selected chronic conditions, stroke is associated with a high level of core activity limitation: • 42% (or 37,000) of people with stroke as their main condition have severe or profound core activity limitation • 17% (or 15,000) have mild or moderate core activity limitation • 39% (or 33,000) have no core activity limitations, but may still have disability not related to core activities. Of the selected chronic conditions, asthma is associated with the lowest level of core activity limitation: • 1.5% (or 13,000) of people with asthma as their main condition have severe or profound core activity limitation • 4.6% (or 38,000) have mild or moderate core activity limitation • 94% (782,000) have no core activity limitation, but may still have disability not related to core activities (Figure CHRONIC.3). (p. 96)

Not everyone with disability receives all the help they need from formal services. Common activities for which the need for formal assistance was unmet include: • cognitive or emotional tasks (40% or 286,000 people with disability, aged 64 and under, living in households who need formal assistance with that activity) • communication (38% or 86,000) • property maintenance (31% or 139,000) • household chores (31% or 124,000) • mobility (20% or 98,000) (ABS 2019). The reasons given for not receiving any or more help from an organised service with at least one activity include: • service costs too much (38% or 199,000 people with disability, aged 64 and under, with an unmet need for formal assistance) • did not know of service (18% or 95,000) • not eligible for service (16% or 84,000) • service does not provide sufficient hours (14% or 73,000) • unable to arrange service (14% or 72,000) • no service available (13% or 68,000) (ABS 2019). Reasons for not receiving any or more help from an organised service with at least one activity differ by remoteness. Among people with disability aged 64 and under, with an unmet need for formal assistance: • people living in Outer regional and remote areas are more likely (24% or 15,000) not to receive help due to no service being available than those living in Major cities (9% or 31,000) • people living in Inner regional areas are more likely (23% or 26,000) not to receive help due to not being eligible for service than those living in Major cities (14% or 49,000) and Outer regional and remote areas (15% or 9,000) • people living in Major cities are more likely (40% or 140,000) not to receive help due to service costing too much than those living in Outer regional and remote areas (27% or 16,000) (ABS 2019). (p. 133)

Household, Income and Labour Dynamics in Australia (HILDA) Survey

Difficulties experienced. Some people with disability experience difficulties at their school or educational institution, such as learning, fitting in socially and communicating. 

School students (primary and secondary). Not all school students (aged 5–18) with disability have difficulty at their school – more than one-third (36% or 135,000) do not. Some who have no difficulty have a schooling restriction (16% of school students with disability, or 61,000) while others do not (20% of school students with disability, or 76,000). This varies by disability group and remoteness: • More than 4 in 5 (81% or 122,000) students with psychosocial disability have difficulty at school compared with 3 in 5 (59% or 54,000) of those with physical disability. • More than two-thirds (69% or 59,000) of students living in Inner regional areas have difficulty compared with 3 in 5 (59% or 23,000) of those living in Outer regional and remote areas (ABS 2019). 

Of those who have difficulty at school, the most common experienced are: 

• learning difficulties (68% or 165,000) 

• fitting in socially (56% or 137,000) 

• communication difficulties (44% or 107,000) 

• intellectual difficulties (22% or 54,000) 

• sports participation (17% or 42,000) 

• difficulty sitting (15% or 37,000) (ABS 2019). (pp. 298-299)

Non-school students Not all non-school students with disability have difficulty at their educational institution – almost three-quarters (74% or 137,000) do not. Some with no difficulty have a nonschool educational restriction (19% of non-school students with disability, or 35,000) while others do not (53% of non-school students with disability, or 99,000). Of those who have difficulty, the most common experienced are: • learning difficulties (32% or 17,000) • fitting in socially (25% or 13,000) • communication difficulties (20% or 11,000) (ABS 2019).

References

ABS (Australian Bureau of Statistics) (2019) Microdata: disability, ageing and carers, Australia, 2018, ABS cat. no. 4430.0.30.002, ABS, AIHW analysis of TableBuilder data, accessed 14 October 2021. https://www.abs.gov.au/statistics/microdatatablebuilder/available-microdata-tablebuilder/disability-ageing-and-carers-australia

DSS (Department of Social Services) and MIAESR (Melbourne Institute of Applied Economic Social Research) (2019) The Household, Income and Labour Dynamics in Australia (HILDA) Survey, general release 18 (wave 17), doi:10.26193/IYBXHM, ADA Dataverse, AIHW analysis of unit record data, accessed 15 December 2021.