Palliative care for adolescents and young adults – an occupational therapist perspective
A blog post written by Dr. Amy Wallis, an author from our Latest Australian Research series
Adolescence and young adulthood (15- 25-year-olds), is a unique stage of development which encompasses both physical and psychosocial development. Increased independence from parents and care givers, as well as developing life roles such as worker and intimate partner require more mature communication, interpersonal skills, and coping strategies. This stage of development is distinct and when coupled with a palliative cancer diagnosis, presents a challenge for the young person when accessing appropriate palliative care.
Current literature clearly identifies the need for palliative care for this age group to be informed by knowledge of the capacities and needs associated with developmental stage, maturity, and age-appropriate life roles. Further, the type of cancer and the physical, emotional, social, and mental impacts, at this stage of development play a role in the distinct palliative care needs of this population.
Whilst the role of the occupational therapist in palliative care for young people has been recognised, little is known about available occupational therapy services within Australia, or the specific occupational needs of young people with cancer in palliative care.
Our recent study (Wallis et al., 2022), of occupational therapists in Australia working in, or with experience working in palliative care for the young person, aimed to identify 1. Palliative care services gaps; 2. Facilitators and challenges to providing occupational therapy for this population; and 3. Perceived occupational needs of young people in palliative care living with a life-limiting cancer diagnosis.
Gaps in service delivery that were identified showed:
- a lack of age-appropriate palliative care facilities throughout Australia meaning young people were and are being provided care in paediatric or adult facilities
-gaps in psychosocial (quality of life interventions) and occupational therapy service provision (client centred care enabling meaningful occupational role participation)
Participants did not highlight any facilitators to service provision, identifying only challenges:
-funding for service provision and occupational therapist positions
-knowledge of the occupational therapy role by both other health professionals and consumers, directly impacting referral and utilisation of age-appropriate services
-professional confidence by occupational therapists
Perceived occupational needs of the young person included:
-connection with peers (in person and digitally)
-participation in age specific occupational roles (despite palliative timeframe)
As the number of young people diagnosed with cancer in Australia increases age-specific services must increase to address this need. The demand for occupational therapists in palliative care for young people is set to increase and occupational therapists must be ready for this call to action. The Paediatric Addendum to the Palliative Care Australia Service Development Guidelines (2020) guiding states and territories within Australia to develop pathways of care for the young person in palliative care shine light on the need for specialist multidisciplinary care teams. This need highlights an opportunity for the occupational therapy profession to utilise this shift in healthcare provision for the young person and secure the profession’s place in this pathway of care as it is established. Now is the time for occupational therapists to be heard and advocate for their place at the table in this area of care.
Dr Amy Wallis
PhD, BSc (OT)
Edith Cowan University (Lecturer)
Allied Education Group (Director)
References:
Wallis A, Meredith P, Stanley M. Occupational therapy in oncology palliative care for adolescents and young adults: Perspectives of Australian occupational therapists. Aust Occup Ther J. 2022 Apr;69(2):165-176. doi: 10.1111/1440-1630.12780. Epub 2021 Dec 28. PMID: 34961958.