“When everything changes:” parent perspectives on the challenges of accessing care for a child with a disability

A Walker, ML Alfonso, G Colquitt, K Weeks… - Disability and health …, 2016 - Elsevier
Background Health disparities exist among individuals living in rural and urban contexts in
terms of access to health care and overall mortality. These disparities are typically greater for …

'It would be much easier if we were just quiet and disappeared': Parents silenced in the experience of caring for children with rare diseases

G Currie, J Szabo - Health Expectations, 2019 - Wiley Online Library
Background Parent experiences of caring for children with neurodevelopmental disease
have been silenced and constrained by social, political and health influences. There is a …

Availing services for developmental disabilities: parental experiences from a referral center in developing country

M Juneja, R Jain, S Singhal, D Mishra - The Indian Journal of Pediatrics, 2012 - Springer
Objectives To identify the problems faced by parents of children with developmental
disabilities in availing rehabilitative services and to find their satisfaction level. Methods This …

ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers' perspectives of a co-designed program to support parents raising a child with an early …

L Miller, G Nickson, K Pozniak, D Khan, C Imms… - Research in …, 2022 - Elsevier
Aims This study reports parents' perspectives of, ENVISAGE: ENabling VISions And Growing
Expectations. ENVISAGE–co-designed by parents and researchers–is an early intervention …

Meaningful outcomes for children and their caregivers attending a paediatric brain centre

MA Heydenrijk‐Kikkert, AKK Schmidt… - … Medicine & Child …, 2023 - Wiley Online Library
Aim To identify meaningful outcomes of children and their caregivers attending a paediatric
brain centre. Method We compiled a long list of outcomes of health and functioning of …

Health outcomes for children with neurodisability: what do professionals regard as primary targets?

A Janssens, J Williams, R Tomlinson… - Archives of disease in …, 2014 - adc.bmj.com
Aim To identify what aspects of health clinicians target when working with children with
neurodisability, and which might be appropriate to assess the performance of health …

Impact of “early intervention” parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study

L Miller, C Imms, A Cross, K Pozniak… - Disability and …, 2023 - Taylor & Francis
Purpose This study explored the feasibility, impact and parent experiences of ENVISAGE
(ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed …

Parents' experiences in seeking child care for school age children with disabilities—Where does the system break down?

HA Jinnah, Z Stoneman - Children and Youth Services Review, 2008 - Elsevier
The purpose of this study was to examine the process through which families of school age
children with disabilities seek care and to identify the points in the process where the system …

[HTML][HTML] Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study

B Finlay, K Wittevrongel, D Materula, ML Hébert… - Research in …, 2023 - Elsevier
Background At present, little is known about the factors that contribute to the relatively low
uptake of government-funded disability programs in Canada. Aim Understand how …

Childhood disabilities and the cost of developmental therapies: the service provider perspective

S Shaban, H Amin - International Journal of Qualitative Studies on …, 2024 - Taylor & Francis
Purpose For children with neurodevelopmental disabilities (CWNDs), early diagnosis that
leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy …