Files
Abstract
Inherited bleeding disorders affect the blood’s ability to clot; they are expensive to treat and have no cure. Most young people with inherited bleeding disorders in low-income countries suffer debilitating pain, severe joint damage, disability, and early death. The disorders affect their ability to cope, progress normally through the stages of adolescent development, socialize, and develop self-efficacy skills. The purpose of this study was to identify positive youth development factors that could improve the quality of life of young adults diagnosed with inherited bleeding disorders in Latin America.
Thirty-seven participants from 7 countries in the region completed an online survey with two scales: 1) the HemoLatin-Qol survey to ascertain the extent that symptoms of that inherited bleeding disorders interfere with youth development in Latin America and 2) the Chinese Youth Positive Development Scale (CYPDS) to assess attributes of positive youth development. In addition, participants answered open-ended questions about their experience living with a bleeding disorder in Latin America and provided recommendations for program improvements.
The HemoLatin-Qol results showed that nine respondents had negative z-scores in every domain of the survey. Using z-scores to compare the relative impact of the constructs showed that the barriers to living with hemophilia, such as the ability to access treatment and care, negatively impacted most participants. The lowest overall quality of life index z-score was more than two standard deviations below the average (-2.06). The CYPDS survey revealed that participants believed they are resilient and able to adapt to life and health challenges (M=4.35; SD=.58). However, their self-efficacy scores were low (M=2.95; SD=.57), indicating that they feel helpless when facing life difficulties. Findings from the open-ended responses yielded five themes: Living with a bleeding disorder 1) is a constant challenge, 2) teaches you to adapt, 3) means finding your community, 4) involves dealing with unmet needs, and 5) is transformative.
Developing policies and programs at every level of the socio-ecological framework for young adults living with inherited bleeding disorders in Latin America is essential. Increasing training for healthcare providers, developing regional level peer mentoring programs and providing psychosocial support will promote their well-being.
Thirty-seven participants from 7 countries in the region completed an online survey with two scales: 1) the HemoLatin-Qol survey to ascertain the extent that symptoms of that inherited bleeding disorders interfere with youth development in Latin America and 2) the Chinese Youth Positive Development Scale (CYPDS) to assess attributes of positive youth development. In addition, participants answered open-ended questions about their experience living with a bleeding disorder in Latin America and provided recommendations for program improvements.
The HemoLatin-Qol results showed that nine respondents had negative z-scores in every domain of the survey. Using z-scores to compare the relative impact of the constructs showed that the barriers to living with hemophilia, such as the ability to access treatment and care, negatively impacted most participants. The lowest overall quality of life index z-score was more than two standard deviations below the average (-2.06). The CYPDS survey revealed that participants believed they are resilient and able to adapt to life and health challenges (M=4.35; SD=.58). However, their self-efficacy scores were low (M=2.95; SD=.57), indicating that they feel helpless when facing life difficulties. Findings from the open-ended responses yielded five themes: Living with a bleeding disorder 1) is a constant challenge, 2) teaches you to adapt, 3) means finding your community, 4) involves dealing with unmet needs, and 5) is transformative.
Developing policies and programs at every level of the socio-ecological framework for young adults living with inherited bleeding disorders in Latin America is essential. Increasing training for healthcare providers, developing regional level peer mentoring programs and providing psychosocial support will promote their well-being.