Abstract：
OBJECTIVE: 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.
CONCLUSIONS: 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.
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.
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.
CONCLUSIONS: 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.
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.
摘要：
目的：对患有先天性call体障碍（CCD）的成年人的主观幸福感（SWB）知之甚少。他们对自己的生活感到满意的程度，以及什么可能有助于改善他们的SWB和生活质量。这项研究测量了使用CCD的澳大利亚成年人的SWB，并将结果与更广泛的澳大利亚成年人的规范数据进行了比较。
方法：在线调查由53名带有CCD的澳大利亚成年人独立完成。数据包括人口统计概况和对生活满意度问题的回答，采用个人幸福指数(PWI)和一个开放式问题。测量的域包括生命作为一个整体，生活水平,健康,在生活中实现，个人关系,安全,社区连通性和未来的安全。对PWI结果进行统计分析，并将均值与澳大利亚规范数据进行比较。定性数据采用演绎主题分析法进行分析。
结果：患有CCD的澳大利亚成年人的评分显着低于澳大利亚成年人在所有领域的预期，除了生活水平和安全性。定量分析结果得到了定性主题分析的支持，表达对整个生活感到满意的特殊挑战和障碍，个人关系,在生活中实现，健康和未来的安全。
结论：来自PWI和伴随的定性反应的证据表明，与普通人群相比，患有CCD的澳大利亚成年人的SWB显着降低。需要进一步的研究来检查生活经验并探索支持该社区的解决方案。
对患有call体障碍（CCD）的澳大利亚成年人的生活质量和个人福祉知之甚少。一种罕见的脑部疾病，具有从轻度到重度的复杂影响。患有CCD的人出生时缺少部分或全部call体，大脑两半之间的连接体。这项研究要求患有CCD的成年人在在线问卷中对自己的个人健康状况进行评分，并将结果与澳大利亚普通人群进行比较。参与者还被要求用自己的话描述CCD如何影响他们的生活。我们发现，患有CCD的成年人的个人幸福感明显低于澳大利亚普通人群。最关心的问题是关系，人生成就,心理健康，没有安全的未来。结果告诉我们，我们需要使用研究方法更深入地探索个人福祉，在这些方法中，患有CCD的成年人可以告诉我们更多关于CCD对他们生活的影响。我们需要询问他们如何认为可以改善他们的生活质量，以及什么支持将有助于实现这一目标。
方法：在线调查由53名带有CCD的澳大利亚成年人独立完成。数据包括人口统计概况和对生活满意度问题的回答，采用个人幸福指数(PWI)和一个开放式问题。测量的域包括生命作为一个整体，生活水平,健康,在生活中实现，个人关系,安全,社区连通性和未来的安全。对PWI结果进行统计分析，并将均值与澳大利亚规范数据进行比较。定性数据采用演绎主题分析法进行分析。
结果：患有CCD的澳大利亚成年人的评分显着低于澳大利亚成年人在所有领域的预期，除了生活水平和安全性。定量分析结果得到了定性主题分析的支持，表达对整个生活感到满意的特殊挑战和障碍，个人关系,在生活中实现，健康和未来的安全。
结论：来自PWI和伴随的定性反应的证据表明，与普通人群相比，患有CCD的澳大利亚成年人的SWB显着降低。需要进一步的研究来检查生活经验并探索支持该社区的解决方案。
对患有call体障碍（CCD）的澳大利亚成年人的生活质量和个人福祉知之甚少。一种罕见的脑部疾病，具有从轻度到重度的复杂影响。患有CCD的人出生时缺少部分或全部call体，大脑两半之间的连接体。这项研究要求患有CCD的成年人在在线问卷中对自己的个人健康状况进行评分，并将结果与澳大利亚普通人群进行比较。参与者还被要求用自己的话描述CCD如何影响他们的生活。我们发现，患有CCD的成年人的个人幸福感明显低于澳大利亚普通人群。最关心的问题是关系，人生成就,心理健康，没有安全的未来。结果告诉我们，我们需要使用研究方法更深入地探索个人福祉，在这些方法中，患有CCD的成年人可以告诉我们更多关于CCD对他们生活的影响。我们需要询问他们如何认为可以改善他们的生活质量，以及什么支持将有助于实现这一目标。
