Purpose: Very little is known about the subjective well-being (SWB) of adults with a congenital corpus callosum disorder (CCD), the extent to which they feel satisfied with their lives, and what might be helpful in improving their SWB and quality of life. This study measured SWB among Australian adults with a CCD and compared the results with normative data for the wider Australian adult population.
Methods: Online surveys were completed independently by 53 Australian adults with a CCD. Data included demographic profiles and answers to questions about satisfaction with life, employing the Personal Wellbeing Index (PWI) and one open ended question. Domains measured included life as a whole, standard of living, health, achieving in life, personal relationships, safety, community connectedness and future security. The PWI results were statistically analysed and means compared with Australian normative data. The qualitative data were analysed using deductive thematic analysis.
Results: Australian adults with a CCD responded with ratings significantly below what might be expected of the adult Australian population in all domains except for standard of living and safety. Quantitative analysis results were supported by qualitative thematic analysis, expressing particular challenges and barriers to feeling satisfaction with life as a whole, personal relationships, achieving in life, health and future security.
Conclusion: Evidence from the PWI and accompanying qualitative responses indicate that SWB of Australian adults with CCD is significantly reduced compared with the general population. Further research is needed to examine the lived experience and explore solutions for support of this community.
Keywords: Adults; Brain; Corpus callosum; PWI; Personal wellbeing; Quality of life.
Very little is known about the quality of life and personal well-being of Australian adults who have a corpus callosum disorder (CCD), a rare brain condition with complex impacts ranging from mild to severe. People with a CCD are born missing part or all of their corpus callosum, the connecting body between the two halves of the brain. This study asked adults with a CCD to rate their own personal wellbeing in an online questionnaire and the results were compared with those of the general Australian population. Participants were also asked to describe how a CCD affected their lives in their own words. We found that adults with a CCD have significantly lower personal wellbeing than the general Australian population. The most concerning issues were with relationships, life achievements, mental health and not having a secure future. The results tell us that we need to explore personal wellbeing in more depth using research methods in which adults with a CCD can tell us more about the impacts of a CCD on their lives. We need to ask how they think the quality of their lives could be improved and what supports would help to achieve that.
© 2024. The Author(s).