What Are The Lived Experiences Of Young Adults With Spina Bifida In The UK Today And What Can Be Learned From Challenges in Recruiting This Group To Online Qualitative Research? Lessons From An Unsuccessful Qualitative Online Research Study

Existing research on young adults with spina bifida commonly focuses on how the condition impacts their health outcomes rather than their lived experiences in key areas such as employment, social life and external support systems. The original research study aimed to gain a wider understanding of the lived experiences of 18–25-year-olds with spina bifida who attend an online support group. However, there was a lack of uptake and the dissertation was adapted. The dissertation now identifies the factors that can impact participation in online research on young adults with spina bifida. This will be achieved through a literature review and a semi-systematic literature review. As reflection, reflexivity and transparency are at the core of this dissertation, personal reflections will be included to apply the literature to the original research study. The findings demonstrate that there are multiple factors that can impact participation in online research with young adults with spina bifida such as power and positionality, trust, the chosen methods and acceptance of disability. This dissertation provides an insight into factors that may prevent research participation in young adults with spina bifida.

Name dc:type.qualificationname

ma

Level dc:type.qualificationlevel

masters

Grantor dc:publisher.institution

University of Wales Trinity Saint David

Year dc:date.issued

2026

Author dc:creator

• Walters, Lauren

• HM Cymdeithaseg

Dc Identifier Grantnumber

UWTSD

OAI identifier oai:identifier

oai:repository.uwtsd.ac.uk:4324