Socioeconomic status and resilient coping in rare disease patients: the chain-mediating roles of social support and family resilience

Abstract Background In China, over 20 million individuals live with rare diseases (RDs), yet they continue to face systemic challenges including limited awareness among healthcare professionals, high misdiagnosis rates, diagnostic delays, and poor access to medications. Strengthening patients’ resilient coping capacity is vital to improving their health and well-being. This study investigates the impact of socioeconomic status (SES) on the resilient coping of RDs patients, and examines the chain-mediating roles of social support and family resilience. Methods A cross-sectional study was conducted from June to September 2024, using snowball sampling to recruit 361 confirmed rare disease patients in Anhui Province, China. Data were collected via validated scales (BRCS, SSRS, FRAS-C) and analyzed using SPSS 23.0 and the PROCESS macro (version 4.1). Results Among the 361 participants, the resilient coping score was 14.79 ± 2.69, indicating a level at the lower bound of moderate-resilient coping. SES was significantly and positively correlated with resilient coping, social support, and family resilience. The chain mediation model revealed that SES was positively associated with resilient coping, with 74.15% of the total effect occurring through indirect pathways: (1) SES→Family Resilience→Resilient Coping, and (2) SES→Social Support→Family Resilience→Resilient Coping. Notable differences were observed between urban and rural: rural patients depended more on family resilience, while urban patients benefited more from the combined effects of social support and family resilience. Conclusions SES enhances resilient coping through the mediating functions of social support and family resilience. Interventions should prioritize individuals with low SES, enhance core family competencies, tailor strategies to urban–rural contexts, and build integrated, family-centered support networks to improve patients’ coping and quality of life.

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Publication Details

Journal
Orphanet Journal of Rare Diseases
Published
2026-09-25
DOI
https://doi.org/10.1186/s13023-026-04609-7
Primary Topic
Genomics and Rare Diseases
Type
article
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article

Socioeconomic status and resilient coping in rare disease patients: the chain-mediating roles of social support and family resilience

Wenxiong Zhou, Shijie Sun, Xin’yi Zhu, Shen’ao Wei et al.
Orphanet Journal of Rare Diseases
Genomics and Rare Diseases
article

Socioeconomic status and resilient coping in rare disease patients: the chain-mediating roles of social support and family resilience

Wenxiong Zhou, Shijie Sun, Xin’yi Zhu, Shen’ao Wei, Man’man Lu, Xi’xi Liu, Xiao’hu Wang
article en

Abstract

Abstract Background In China, over 20 million individuals live with rare diseases (RDs), yet they continue to face systemic challenges including limited awareness among healthcare professionals, high misdiagnosis rates, diagnostic delays, and poor access to medications. Strengthening patients’ resilient coping capacity is vital to improving their health and well-being. This study investigates the impact of socioeconomic status (SES) on the resilient coping of RDs patients, and examines the chain-mediating roles of social support and family resilience. Methods A cross-sectional study was conducted from June to September 2024, using snowball sampling to recruit 361 confirmed rare disease patients in Anhui Province, China. Data were collected via validated scales (BRCS, SSRS, FRAS-C) and analyzed using SPSS 23.0 and the PROCESS macro (version 4.1). Results Among the 361 participants, the resilient coping score was 14.79 ± 2.69, indicating a level at the lower bound of moderate-resilient coping. SES was significantly and positively correlated with resilient coping, social support, and family resilience. The chain mediation model revealed that SES was positively associated with resilient coping, with 74.15% of the total effect occurring through indirect pathways: (1) SES→Family Resilience→Resilient Coping, and (2) SES→Social Support→Family Resilience→Resilient Coping. Notable differences were observed between urban and rural: rural patients depended more on family resilience, while urban patients benefited more from the combined effects of social support and family resilience. Conclusions SES enhances resilient coping through the mediating functions of social support and family resilience. Interventions should prioritize individuals with low SES, enhance core family competencies, tailor strategies to urban–rural contexts, and build integrated, family-centered support networks to improve patients’ coping and quality of life.

Orphanet Journal of Rare Diseases
No poverty
Openalex Percentile: Top 12%
Genomics and Rare Diseases
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Socioeconomic status and resilient coping in rare disease patients: the chain-mediating roles of social support and family resilience — Wenxiong Zhou, Shijie Sun, et al. · Orphanet Journal of Rare Diseases (2026) | TGRS Research Map | TGRS