The Lived Experience of Fathers and Mothers of Children with ASD: Facilitators and Barriers to Access of Support.

Background:

Enhancing the wellbeing of parents/carers of children with a disability is recognised as an important area for disability policy and clinical practice [1]. Parenting a child with an Autism Spectrum Disorder (ASD) is associated with social isolation, increased stress, anxiety, and depression [2], along with poorer quality of life and physical health [3]. Many parents of children with ASD report substantial unmet needs (e.g., difficulty accessing services, financial pressure) [4, 5] where more directed parent mental health support is needed. Enhancing the mental health of parents in general, has flow on effects to the wider family, including promoting the potential for positive outcomes for their child [6, 7].

Objectives:

To explore the phenomenological mental health experiences of fathers and mothers of school-aged children with an ASD. Additionally, to investigate facilitators and barriers parents of children with ASD face to accessing support for their own mental health.

Methods:

Participants were four fathers and seven mothers of children (aged 8-10 years) with an ASD, living in urban Victoria, Australia. An Interpretative Phenomenological Approach (IPA) was used as it allows for the detailed examination of participants’ lived experiences. Semi-structured interviews were conducted in participants’ homes, work-places, or a local psychology clinic. Interviews lasted approximately 90 minutes, and were completed by two researchers who undertook flexible dialogues, while following an interview schedule. All interviews were audio recorded and transcribed verbatim. Themes capturing the participants’ lived mental health experiences were consolidated into superordinate themes. A bio-ecological approach was used to guide the identification of potential facilitators and barriers to parents accessing the support they required.

Results:

Mothers and fathers reported both positive and negative impacts of parenting a child with ASD on their mental health, including worry, somatisation, exhaustion, acceptance and hope. Individual, interpersonal, and community factors were identified as barriers and facilitators to parents accessing the support they required. Within the individual domain, the importance of self-care and flexibility/restriction were identified as impacting parents’ access to support for their own mental health. External perceptions and informal social support were identified as important factors within the interpersonal domain. Finally, at the community level, system understanding, access to services, financial pressure, and professional support impacted parents’ access to support for their own mental health.

Conclusions:

The results of this qualitative study shed important light on the lived mental health experiences of fathers and mothers raising children with an ASD, along with their unique support needs. While fathers and mothers identified that there are many challenges to parenting a child with ASD that adversely impact their own mental health, there are also many moments of growth, acceptance and optimism. Parents identified important individual, interpersonal and community factors which impact their access to support for their mental health, many of which are modifiable. Continued research and support is needed in order to improve service capacity to provide quality care to the unique needs of mothers and fathers raising children with ASD.