What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice

Éidín Ní Shé; Fiona E J McDonald; Laurel Mimmo; Xiomara Skrabal Ross; Bronwyn Newman; Pandora Patterson; Reema Harrison

doi:10.3390/children8121118

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice

Children (Basel). 2021 Dec 2;8(12):1118. doi: 10.3390/children8121118.

Authors

Éidín Ní Shé^{1

2}, Fiona E J McDonald^{3

4}, Laurel Mimmo^{5

6}, Xiomara Skrabal Ross³, Bronwyn Newman², Pandora Patterson^{3

4}, Reema Harrison²

Affiliations

¹ School of Population Health, University of New South Wales, Sydney, NSW 2052, Australia.
² Centre for Health Systems and Safety, Australian Institute of Health Innovation, Macquarie University, Sydney, NSW 2190, Australia.
³ Canteen Australia, Sydney, NSW 2042, Australia.
⁴ Faculty of Medicine and Health, The University of Sydney, Sydney, NSW 2052, Australia.
⁵ School of Women's and Children's Health, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia.
⁶ Clinical Governance Unit, The Sydney Children's Hospitals Network, Westmead, NSW 2145, Australia.

Abstract

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.

Keywords: adolescents and young adults; cancer care; health; intellectual disability; psychosocial and information support; systematic review; transitions.

Publication types

Review