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,Pandora Patterson,Bronwyn Newman,Laurel Mimmo,Xiomara Skrabal Ross,Reema Harrison

doi:10.3390/children8121118

Éidín Ní Shé, Fiona E J Mcdonald + Show 5 more

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https://doi.org/10.3390/children8121118

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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.

Highlights

Adolescents and young adults (AYA) who have been diagnosed with cancer have been recognised as a distinct population since the early 1990s [1] and it is estimated that globally there are over 1,000,000 new diagnoses each year [2]
This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with
While important for positive cancer outcomes, screening programs are targeted at the general population, and the inclusion of these papers meant including papers that were not focused on people impacted by a cancer diagnosis

Summary

Introduction

Identified impacts for AYAs diagnosed with cancer include complex medical, psychosocial, emotional, and fertility concerns, with detrimental effects on quality of life, education, as well as physical and social development [3,4,5,6]. These impacts can extend for years post treatment during the survivorship phase [2,3,5,7,8]. For many AYAs whose parents are diagnosed with cancer, the experience can be disruptive and detrimental with reports of very high levels of psychological distress and associated unmet needs [9]. AYAs impacted by cancer experience have considerable information and support needs [9,10]

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