Vision is one of the five senses human uses to receive information from their surroundings. The sensory input received by our senses is processed by the brain to provide a comprehensive understanding of the world we live in. Over the course of human evolution, vision has become a primary sensory input. Many of the information in our environment are presented visually using visual features to attract our attention.

Losing your vision and adjusting to life with limited or no vision can be confronting as it significantly changes the way you experience the world. While the primary loss is losing the ability to see, the associated secondary losses are often overlooked, especially mental health concerns (Demmin & Silverstein, 2020). Thus, the impact of vision impairment travels beyond the physical loss and quickly expands to an individual’s social, emotional, and psychological functioning.

This presentation will focus on the role of a psychologist in supporting individuals diagnosed with vision impairment. This would include initial stages of processing grief and loss symptoms based on the Dual Model Process of Bereavement (Stroebe & Schut, 2010), acknowledging both the primary and secondary losses associated to vision loss. As the individual process the associated losses, therapy progresses to acceptance and adjustment to living with low vision or blindness. In most cases, therapy concludes at this point with the perception that the individual has accepted and adjusted to the loss. However, it may leave the individual feeling inadequate or often required to compromise for the loss.

Reshaping the individual’s self-concept is crucial for a true acceptance and adjustment to living with low vision or blindness (Mirmohammadi, Pourmohamadreza-Tajrishim, Dolatshahi, & Bakhshi, 2022). This would involve a reconstruction of the perception of their functioning and purpose in life as a contributing member of society.

A craniofacial diagnosis is considered a lifelong condition, yet relatively little focus has been directed toward ascertaining or providing appropriate support resources for Australian children or their parents.
Therefore, this research will identify the specific psychosocial support needs of families in Australia after their child is diagnosed with a craniofacial condition.
In previous studies by this research team, families have reported mixed experiences with the healthcare system. Many have found it difficult to navigate the process of their child’s diagnosis and subsequent treatment, and to find support to help their child manage the social and psychological challenges they face because of their condition.
As it is increasingly recognised that consultation with stakeholders is necessary in order for a health service to provide a high-quality patient experience, we conducted a research project whereby we consulted with families nationally who have been impacted by any craniofacial condition, in order to identify and explore their support preferences and needs, specific to the Australian context.
In-depth interviews have been conducted with 23 Australian parents (22 families in total) of children diagnosed with a craniofacial condition. Their children are currently at various stages of their craniofacial journey, ranging from infants who have just been diagnosed, to young adults starting University.
Interviews have been transcribed and coded, with four common themes identified that impact craniofacial units around Australia: (1) obtaining practical and clinical information; (2) where and how to get information; (3) surgery and beyond; and (4) suggestions of resources that may help families in the future. These themes reflected the needs of parents throughout their family’s craniofacial journey, from the time of their child’s diagnosis through to, in some cases, when their child was a young adult. Experiences of support were highly variable, with the psychological well-being of parents often seemingly linked to parent's perception of the quality and volume of information provided by the medical system.