TY - JOUR
T1 - Development of the Fearless, Tearless Transition model of care for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities
AU - Culnane, Evelyn
AU - Loftus, Hayley
AU - Efron, Daryl
AU - Williams, Katrina
AU - Di Iorio, Nikki
AU - Shepherd, Rebecca
AU - Marraffa, Catherine
AU - Lubitz, Lionel
AU - Antolovich, Giuliana
AU - Prakash, Chidambaram
PY - 2021/5
Y1 - 2021/5
N2 - Aim: First, to understand the barriers to achieving effective transition and the supports required from the perspective of parents and carers, adolescents with intellectual disability and/or autism spectrum disorder and co-existing mental health disorders (often termed ‘dual disability’), and those who provide services to this group. Second, to develop an informed model of shared care to improve the transition of adolescents with dual disabilities. Method: Carers and a young adult with a dual disability were surveyed about their experience of transition care. Other key stakeholders including paediatricians, general practitioners, and policy makers were also interviewed. These data informed the model of care. Results: Paediatricians and general practitioners reported difficulties establishing working relationships to foster smooth transitions, and carers reported lacking a regular general practitioner with adequate expertise to care for people with dual disabilities. A process of shared care between paediatricians and general practitioners was developed and initiated by a dedicated transition manager, who assisted with care coordination and service linkages. Standardized clinical assessment tools were also introduced to determine patient and carer support needs. Interpretation: This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early transition planning, consistent methods of assessing patient and carer needs, and shared care.
AB - Aim: First, to understand the barriers to achieving effective transition and the supports required from the perspective of parents and carers, adolescents with intellectual disability and/or autism spectrum disorder and co-existing mental health disorders (often termed ‘dual disability’), and those who provide services to this group. Second, to develop an informed model of shared care to improve the transition of adolescents with dual disabilities. Method: Carers and a young adult with a dual disability were surveyed about their experience of transition care. Other key stakeholders including paediatricians, general practitioners, and policy makers were also interviewed. These data informed the model of care. Results: Paediatricians and general practitioners reported difficulties establishing working relationships to foster smooth transitions, and carers reported lacking a regular general practitioner with adequate expertise to care for people with dual disabilities. A process of shared care between paediatricians and general practitioners was developed and initiated by a dedicated transition manager, who assisted with care coordination and service linkages. Standardized clinical assessment tools were also introduced to determine patient and carer support needs. Interpretation: This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early transition planning, consistent methods of assessing patient and carer needs, and shared care.
UR - http://www.scopus.com/inward/record.url?scp=85097610105&partnerID=8YFLogxK
U2 - 10.1111/dmcn.14766
DO - 10.1111/dmcn.14766
M3 - Article
C2 - 33332592
AN - SCOPUS:85097610105
SN - 0012-1622
VL - 63
SP - 560
EP - 565
JO - Developmental Medicine & Child Neurology
JF - Developmental Medicine & Child Neurology
IS - 5
ER -