«Les points ne se joignent pas": Comprendre les besoins de soutien des familles d'enfants sur le spectre de l'autisme

Aperçu: G.M.

Les parents interrogés ont demandé une prestation de service qui a adopté une approche relationnelle axée sur la famille - qui comprend les besoins spécifiques de toute la famille, établit une relation de travail étroite avec eux et s'assure qu'ils sont soutenus à des moments où les parents et les familles sentent qu'ils en ont le plus besoin.

Autism. 2017 Apr 1:1362361316687989. doi: 10.1177/1362361316687989. [Epub ahead of print]

'The dots just don't join up': Understanding the support needs of families of children on the autism spectrum

Galpin J¹, Barratt P¹, Ashcroft E¹, Greathead S¹, Kenny L², Pellicano E^2,3.

Author information

1

1 The Bridge School, UK.

2

2 UCL Institute of Education, University College London, UK.

3

3 School of Psychology, University of Western Australia, Australia.

Abstract

Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families' support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. Semi-structured interviews were conducted with a subgroup of parents ( n = 17), some of whom reported in the survey that they felt unsupported, in order to gain their in-depth perspectives. The results from both the survey and the interviews suggested that existing support (particularly from formal support services) was not meeting parents' needs, which ultimately made them feel isolated and alienated. Parents who were interviewed called for service provision that adopted a relational, family-centred approach - one that understands the specific needs of the whole family, builds a close working relationship with them and ensures that they are supported at times when the parents and families feel they need it most.

PMID: 28449587

DOI: 10.1177/1362361316687989