IF Report “Ageing with Spina Bifida and Hydrocephalus – Finding from Online Focus Group Discussions”

IF launched the report “Ageing with Spina Bifida and Hydrocephalus – Finding from Online Focus Group Discussions”. The report is a result of Focus Group Discussions during [month] 2021 with individuals with SBH. 

Due to improvement of healthcare, many children born with Spina Bifida and Hydrocephalus have become adults, and are reaching their senior years. Little is known about ageing with SBH and its impact on physiology, mental abilities and independence. IF’s key objective is to improve our understanding of the lived experiences of older persons with SBH. 

To gain greater insights into the perceived needs of individuals with SBH with respect to ageing, the IF Working Group on Ageing organised, during June 2021, online focus group discussions with interested IF members across the world in which the outcomes were gathered in this report. 

Discussions from the focus groups reflect the importance of ageing with a specific attention for mental and physical health. Members emphasized on several ageing related challenges such as loneliness, social isolation, physical pain, mental constraints and feeling of depression , perceived stigma, the need for support groups and the importance of coordinated multidisciplinary care.

The results from both the previous descriptive analysis and the outcomes of the focus group discussions described in this report, demonstrate that there is a need to support and enhance the lived experience of people ageing with SBH. 

By sharing the experiences of people ageing with SBH with regard to mental and physical health, IF aims to raise awareness at international level on the often neglected topic of ageing with these lifelong disabilities.

The report includes a set of recommendations to work towards preventing or minimising the ill effects of ageing and to help improve the quality of life of people ageing with SBH.

Download the “Ageing with Spina Bifida and Hydrocephalus – Finding from Online Focus Group Discussions” report

Co-funded by the Rights, Equality and Citizenship programme of the European Union