Article Text

PDF

Improving access to specialist care for adolescent girls with disabilities
  1. Grace Pereira,
  2. Naomi Gerson-Sofer
  1. Oxleas NHS Foundation Trust, London, UK
  1. Correspondence to Dr Grace Pereira, Oxleas NHS Foundation Trust, Greenwich, London SE18 3RG, UK; grace.pereira{at}nhs.net

Statistics from Altmetric.com

Childhood disability affects 4.0%–7.5%1 2 of the population, therefore every GP practice, developmental paediatrician and acute paediatrician will at some point in time be expected to advise with respect to the changing needs of this group, particularly in anticipation of puberty and throughout adolescence.

A common example could be a 12-year-old female with autism and severe intellectual disability, who is sensitive to physical or environmental changes and has limited self-care skills, needing help with toileting, dressing and personal hygiene, who is now approaching puberty. Her parent or carer anticipates the onset of menarche with growing apprehension, and seeks information from their general practitioner (GP) or paediatrician on how to manage this when it occurs, whether it can be postponed, and who can offer advice. Managing menstruation would entail managing the associated hygiene problems, pain, and emotional distress this could cause. Another example could be a 15-year-old with moderate learning difficulties, who can manage her menstruation but who may be vulnerable to being sexually abused. A third example might be a 16-year-old cognitively able girl who is immobile due to cerebral palsy and who is inquiring about sexual relationships and her ability to bear children.

The parents of such adolescent girls are often very keen for anticipatory advice, which is not easily accessible due to the paucity of trained specialists in this field. Parents will often seek this advice from their GP and local paediatricians, who may not have the necessary training to address the complexities of a normal physiological process in an individual with complex needs.

The accompanying review entitled ‘Contraception for adolescents with disabilities: taking control of periods, cycles and conditions’3 is a breath of fresh air in bringing the needs of these girls into the spotlight, when research on young females with disabilities is so scarce. The article provides a comprehensive review of the physiological, pathological, emotional-behavioural, ethical and legal considerations of young female adolescents with disabilities. It then covers various presentations and needs of the child and family and offers management options. The article also looks at the existing legal framework, including issues around mental capacity and consent, which is fundamental in such cases.

The Greenwich Child and Adolescent Sexual Health Service (known locally as CASH) provides a high level of expertise which can be accessed locally, and thus avoids the need for referral to tertiary services. The service offers the flexibility of telephone contact, or review within the special needs school or in a dedicated clinic. Community paediatricians often refer adolescent girls to the CASH service for anticipatory advice prior to menarche, regulating the menstrual cycle and managing associated symptoms, contraceptive advice and promoting safe sex.

With growing demands for this service in children with disabilities, postgraduate training posts focusing on sexual health and contraception in adolescents should be more widely available in the UK. This will aid development of local services to address the unmet needs of this growing cohort of children.

Dr Dickson’s review captures the broader spectrum of sexual health needs in young girls with disabilities and provides comprehensive guidance to support clinical decisions.

References

View Abstract

Footnotes

  • Competing interests None declared.

  • Provenance and peer review Commissioned; internally peer reviewed.

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Linked Articles