Following initial advocacy from patients “graduating” at 19 years of age from Bear Cottage (NSW Children’s Hospice), plans were commenced in 2017 to build an adolescent and young adult hospice to cater for the needs of these patients (1).
In February 2023 the first adolescent and young adult hospice (AYAH) in Australia opened.
The Manly Adolescent and Young Adult Hospice (AYAH) is an 8 bedded facility that accepts admissions between the ages of 16 and 24 for patients with a life limiting illness.
Admissions are accepted for:
- Elective Respite – planned respite admission when patients are medically stable but they or their families would benefit from respite and input from the multidisciplinary (MDT) team.
- Emergency Respite – if any urgent need for the AYAH to provide respite care (e.g lack of carer availability in the community, unable to stay at home due to bush fires or housing issues)
- Step down support after an acute hospital admission
- Admission for complex symptom management
- End of life care
- After death care in a cooled room for up to 3 days
Increasing research has highlighted the very specialist nature of palliative care for adolescents and young adults (AYA) including the particular importance of psychosocial support (2). The AYAH has a very comprehensive MDT team including daily onsite medical care with a 24 hour on-call service, 24 hour nursing presence and an extensive Allied Health team including physiotherapy, occupational therapy, pharmacist, social work, clinical psychology, bereavement coordinator, dietetics, speech pathology, music and art therapy.
The importance of support for family and carers is also well documented (3). The AYAH is designed to support families and carers with two onsite two bedroom apartments, and two carer rooms. Assistance dogs are also welcome.
Early evidence suggests as with paediatric palliative care hospices, this patient population is markedly different to those seen in an adult palliative care service (4). There are many patients with long term neurological or metabolic disorders. Oncology diagnoses are significantly rarer than in the adult palliative care population.
This highly specialist facility is meeting the complex medical, psychosocial and care needs for a unique, previously unsupported patient population.
For any enquiries about the services offered please contact email@example.com
- News – NSW backs nation’s first young adult hospice (no date) NSW backs nation’s first young adult hospice – News. Available at: https://www.health.nsw.gov.au/news/Pages/20170402_00.aspx#:~:text=The%20NSW%20Government%20will%20help%20establish%20Australia%E2%80%99s%20first,and%20Minister%20for%20Health%20Brad%20Hazzard%20announced%20today. (Accessed: 18 July 2023).
- Abdelaal M, Avery J, Chow R, Saleem N, Fazelzad R, Mosher P, Hannon B, Zimmermann C, Al-Awamer A. Palliative care for adolescents and young adults with advanced illness: A scoping review. Palliat Med. 2023 Jan;37(1):88-107. doi: 10.1177/02692163221136160. Epub 2022 Nov 9. PMID: 36352490; PMCID: PMC9841827.
- Lacey, R.E., Xue, B. and McMunn, A. (2022) ‘The mental and physical health of Young Carers: A systematic review’, The Lancet Public Health, 7(9). doi:10.1016/s2468-2667(22)00161-x.
- Friedman, C. and VanPuymbrouck, L. (2019) ‘The impact of people with disabilities choosing their services on quality of life outcomes’, Disability and Health Journal, 12(2), pp. 187–194. doi:10.1016/j.dhjo.2018.11.011.
Download AYAH Information Brochure HERE