The accessibility of counselling for families and carers of children with Down syndrome
- Sandra Redman
Correspondence: sandraredman16@aol.com
Abstract
There is substantial evidence documenting the impact of caring for a child with learning difficulties on parental mental health. However, there is comparatively little research relating to Down syndrome specifically, exploring how parents cope emotionally, where they seek support, whether that support is sufficient, and what barriers exist to accessing mental health services. Concepts such as resilience are frequently used in this context, yet for some parents of disabled children this term evokes negative responses, as it may imply personal failure and obscure structural shortcomings within health, education, and social care systems.
This study aimed to explore parents’ experiences of emotional support when raising a child with Down syndrome. The research addressed four key questions: where parents seek emotional support; whether that support meets their needs; whether they would like more support; and what barriers prevent access to additional support. An anonymous questionnaire was distributed to 110 parents recruited through a London-based charity and parent group supporting families of children with learning difficulties from birth to 18 years.
Findings highlighted varied sources of emotional support, with many parents reporting unmet needs. While not all parents experienced depression or low mood, emotional distress was common and often accompanied by guilt or shame, particularly when parents felt they were expected to be “resilient.” Some parents described their child as a protective factor, providing meaning and purpose during difficult periods, which may reduce suicide risk. However, this did not negate the need for accessible mental health support.
Conclusions suggest that time-limited counselling models may be poorly suited to this population due to attendance challenges. Recommendations include flexible counselling approaches that allow children to attend sessions or provide childcare, increased provision of counselling within nurseries, schools, and children’s centres, and improved professional awareness of parental mental health needs. Addressing systemic barriers, rather than individualising responsibility, is essential to supporting parental wellbeing.
