TY - JOUR
T1 - "It's very saddening, you keep on wondering when the symptoms will be over"
T2 - A qualitative study exploring the long-term chikungunya disease impact on daily life and well-being, 6 years after disease onset
AU - Doran, Churnalisa
AU - Duits, Ashley
AU - Tami, Adriana
AU - Gerstenbluth, Izzy
AU - Bailey, Ajay
N1 - Publisher Copyright:
Copyright: © 2023 Doran et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
PY - 2023/12/6
Y1 - 2023/12/6
N2 - BACKGROUND: Long-term chikungunya is a mosquito-borne disease, characterized by disabling rheumatic symptoms persisting for years, after infection with the chikungunya virus. Previous studies focused on assessing the well-being of affected individuals from a quantitative perspective using generic instruments, and have reported physical and psychological impairment. However, a common critique is that generic instrument's structured responses and pre-defined health domains selected by health professionals, may not capture the full extent of well-being impairment experienced by patients. This study aimed to explore in-depth to which extent long-term chikungunya disease impacts daily living and the physical, psychological, and social well-being from the experiences and perspective of affected individuals. METHODOLOGY/PRINCIPAL FINDINGS: Using open-ended questions, in-depth interviews were conducted with 20 purposively selected individuals with long-term chikungunya disease, in Curaçao. Interview audio-recordings were transcribed verbatim. The data were thematically analyzed. Living with persistent rheumatic symptoms affected the participant's daily living and well-being in several ways: experience of physical impact (restricted physical functioning and limitations in activities of daily life); experience of psychological impact (altered emotional state, fear of walking and running, psychosocial aspects of footwear adaptations, and uncertainty about disease progression and future health); and experience of social impact (social isolation and impaired relational maintenance, social dependency, challenges of social support, at-work productivity loss, and giving up leisure activities after work). CONCLUSIONS/SIGNIFICANCE: This study, the first of its kind, indicated that the adverse impact of long-term chikungunya disease is currently underreported. The persistent rheumatic symptoms had a negative effect on functional ability, which in turn impacted broad aspects of daily life and well-being, beyond what is captured by generic instruments. In the view of the findings, physical exercise programs including manual therapy, aerobics, resistance and stretching exercises, and orthopaedic footwear interventions in a multidisciplinary patient-centred approach may improve physical function and subsequently overall well-being.
AB - BACKGROUND: Long-term chikungunya is a mosquito-borne disease, characterized by disabling rheumatic symptoms persisting for years, after infection with the chikungunya virus. Previous studies focused on assessing the well-being of affected individuals from a quantitative perspective using generic instruments, and have reported physical and psychological impairment. However, a common critique is that generic instrument's structured responses and pre-defined health domains selected by health professionals, may not capture the full extent of well-being impairment experienced by patients. This study aimed to explore in-depth to which extent long-term chikungunya disease impacts daily living and the physical, psychological, and social well-being from the experiences and perspective of affected individuals. METHODOLOGY/PRINCIPAL FINDINGS: Using open-ended questions, in-depth interviews were conducted with 20 purposively selected individuals with long-term chikungunya disease, in Curaçao. Interview audio-recordings were transcribed verbatim. The data were thematically analyzed. Living with persistent rheumatic symptoms affected the participant's daily living and well-being in several ways: experience of physical impact (restricted physical functioning and limitations in activities of daily life); experience of psychological impact (altered emotional state, fear of walking and running, psychosocial aspects of footwear adaptations, and uncertainty about disease progression and future health); and experience of social impact (social isolation and impaired relational maintenance, social dependency, challenges of social support, at-work productivity loss, and giving up leisure activities after work). CONCLUSIONS/SIGNIFICANCE: This study, the first of its kind, indicated that the adverse impact of long-term chikungunya disease is currently underreported. The persistent rheumatic symptoms had a negative effect on functional ability, which in turn impacted broad aspects of daily life and well-being, beyond what is captured by generic instruments. In the view of the findings, physical exercise programs including manual therapy, aerobics, resistance and stretching exercises, and orthopaedic footwear interventions in a multidisciplinary patient-centred approach may improve physical function and subsequently overall well-being.
UR - http://www.scopus.com/inward/record.url?scp=85179021310&partnerID=8YFLogxK
U2 - 10.1371/journal.pntd.0011793
DO - 10.1371/journal.pntd.0011793
M3 - Article
C2 - 38055664
AN - SCOPUS:85179021310
SN - 1935-2735
VL - 17
JO - PLoS Neglected Tropical Diseases
JF - PLoS Neglected Tropical Diseases
IS - 12
M1 - e0011793
ER -