Department of Psychiatry, Brigham and Women's Hospital, Boston, MA, 02115, USA.
Harvard Medical School, Boston, MA, 02115, USA.
Int J Behav Med. 2024 Jun;31(3):422-432. doi: 10.1007/s12529-023-10231-9. Epub 2023 Oct 16.
Loneliness is a growing public health concern associated with substantial negative mental and physical health outcomes. Loneliness is especially relevant for individuals with a chronic illness, perhaps more so if their illness is rare. Little is known about the psychosocial experience of individuals with a rare chronic illness, and whether and how it may differ from the experience of individuals with common chronic illnesses. We compared the magnitude of loneliness in persons with a rare or common chronic illness and examined theoretically guided predictors of loneliness as follows: stigma, illness intrusiveness, social comparison, social support, support from healthcare providers, and self-efficacy.
Individuals with a chronic illness (common or rare) completed an anonymous online survey (N = 952).
Individuals with common chronic illnesses were as lonely as those with a rare chronic illness. Loneliness in both groups was higher than that in population norms. Regression analyses reveal that independent of other predictors, loneliness was especially high among people who feel stigmatized by others, those who have less social support available, and people whose functioning is more disrupted by their illness (all p values < 0.01).
The similarity of loneliness in these groups reinforces the value of further systematic research to identify the needs of individuals with any type of chronic illness. Study findings highlight the importance of examining internalized stigma and social support as possible targets of intervention to reduce loneliness among individuals with a chronic illness, recognizing some of the unique features and challenges of their disorders, whether common or rare.
孤独感是一个日益严重的公共卫生问题，与大量负面的身心健康结果密切相关。孤独感对于患有慢性疾病的人尤其相关，如果他们的疾病是罕见的，可能更为严重。对于患有罕见慢性疾病的个体的心理社会体验知之甚少，也不知道其是否与常见慢性疾病患者的体验不同，以及如何不同。我们比较了罕见或常见慢性疾病患者的孤独感程度，并按照以下理论指导预测因素来检查孤独感：耻辱感、疾病侵扰、社会比较、社会支持、来自医疗保健提供者的支持和自我效能感。
患有慢性疾病（常见或罕见）的个体完成了一项匿名在线调查（N=952）。
患有常见慢性疾病的个体与患有罕见慢性疾病的个体一样孤独。这两组人群的孤独感都高于人群正常值。回归分析显示，独立于其他预测因素，感到被他人歧视、社会支持较少以及疾病对其功能的干扰较大的人群的孤独感尤其高（所有 p 值均<0.01）。
这些群体的孤独感相似，这进一步强化了对任何类型的慢性疾病患者的需求进行系统研究的价值。研究结果强调了检查内在耻辱感和社会支持作为减少慢性疾病患者孤独感的干预措施的目标的重要性，同时认识到他们的疾病（无论是常见还是罕见）的一些独特特征和挑战。
