3 research outputs found
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Quality of Life in Latino and Non-Latino Youth aged 8-18 Years with Sickle Cell Disease: A Mixed Methods Study
While sickle cell disease (SCD) primarily affects those of African heritage, Latinos, the second most commonly affected group, are often not included in studies of youth with SCD. The purpose of this mixed methods study was to complete the linguistic translation validation of the PedsQL SCD Module, a recently validated disease specific quality of life (QOL) instrument, for use in Spanish speaking parents and youth with SCD (Aim 1). Using this instrument, QOL of Latino and African American youth with SCD who participated in an NIH funded study to improve adherence to hydroxyurea therapy (R21 NR013745) were compared (Aim 2) and factors associated with QOL examined (Aim 3). For Aim 1, 10 Latino youth with SCD (n = 5 age, 8-12 years; n = 5 age, 13-18 years) and their parents completed a demographic survey, Spanish version of PedsQL SCD Module and an audio-taped cognitive interview. Across age groups, all reported that the translated PedsQL Sickle Cell Disease Module was easy to understand and had minimal suggestions for further improvement. For Aims 2 and 3, secondary baseline data from 28 youth (mean age 13.6 2.4 years) with sickle cell disease and their parents who participated in the HABIT feasibility trial were analyzed using descriptive statistics, Wilcoxon Signed Rank and Mann-Whitney test, and linear regression modeling. Latino youth reported higher QOL scores than non-Latino youth for all QOL measures except for the Worry II subscale of the disease-specific QOL measure while Latino parents reported higher QOL scores than non-Latino parents for all subscales except for three: the disease-specific Worry I, Worry II, and Communication I subscales. Poorer disease specific QOL was predicted by greater youth-parent discordance regarding sickle cell disease responsibility for parents (β = -3.07, p = 0.04) but not youth. Poorer disease-specific QOL was predicted by greater number of both emergency room visits during the prior year for both youth (β = -2.89, p = 0.005 [self-report]; β = -5.07, p = 0.002 [electronic medical records]) and parents (β = -3.41, p = 0.002 [self-report]; β = -6.93, p = <0.001 [electronic medical records]) and hospitalizations during the prior year (youth β = -5.72, p = <0.001 [self-report]; β = -7.56, p = 0.03 [electronic medical records]; parents β = -6.48, p = <0.001 [self-report];
β = -9.16, p = 0.02 [electronic medical record]). Based on these findings, greater youth-parent discordance regarding sickle cell family responsibility and greater utilization of emergency rooms and/or hospitals were associated with poorer disease-specific QOL
Adolescent and parent use of new technologies for health communication: a study in an urban Latino community
Background. Mobile communication technologies provide novel opportunities to support clinic-based health initiatives. Adoption of technologies for daily use and for health communication can differ between communities, depending upon demographic and cultural characteristics. Design and methods. A survey was administered in adolescent primary care and subspecialty clinics to assess parent-adolescent preferences in use of mobile technologies and social media to support provider-patient communication in an urban Latino community. Results. Of 130 respondents (65 parent-adolescent pairs), approximately half frequently sent and received text messages but lacked agreement regarding the other’s text messaging use. In contrast, adolescents only rarely used email compared to parents (15.4% versus 37.5%, P=0.006). Of social media, FacebookTM/MySpaceTM was most frequently used by parents and youth (60% and 55.4%, P=0.59); however, most lacked interest in using social media for health communication. Parents reported more interest than adolescents in receiving email (73.4% versus 35.9%, P<0.001) and text messages (58.5% versus 33.9%, P=0.005) for health, but had more concerns about privacy issues (26.2% versus 9.2%, P=0.01). Respondents who were American born (aOR 5.7, 95%CI 1.2-28.5) or regularly used Instant Messaging or FacebookTM/MySpaceTM (aOR 4.6, 95%CI 1.4-14.7) were more likely to be interested in using social media for health communication. Conclusions. These findings underscore the importance of targeted assessment for planning the utilization of communication technologies and social media in clinical care or research for underserved youth
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Exploring HIV concern in a population of Dominican American women midlife and older
Background
The feminization and ethnic diversification of HIV infection, has resulted in a call for gender- and culture-specific prevention strategies for at-risk groups including Latinos in the United States. The steadily changing demographic profile of the AIDS epidemic challenges prevention strategies to remain relevant and up-to-date, particularly in populations of women midlife and older where an understanding of risk remains under explored. As the CDC requests country-specific HIV risk profiles for Latino communities in the US, understanding the socio-economic, behavioral and personal risk reasons of HIV risk for older Dominican women is critical for prevention.
Methods
We conducted focus group discussions informed by the Theory of Gender and Power (TGP). The three constructs of the TGP: 1) Affective influences/social norms; 2) Gender-specific norms and.
3) Power and Authority guided the thematic analysis and identified themes that described the socio-cultural and contextual reasons that that contribute to perceptions of HIV risk.
Results
Sixty Dominican American women ages 57–73 participated in our focus group discussions. Sexual Division of Labour: 1) Economic Dependence; 2) Financial Need and 3) Education and Empowerment. Sexual Division of Power: 4) HIV Risk and 5) Relationship Dynamics. Cathexis: Affective Influences/Social Norms: 6) HIV/AIDS Knowledge and 7) Prevention and Testing. Importantly, participants were concerned about partner fidelity when visiting the Dominican Republic, as the country accounts for the second highest HIV rates in the Caribbean.
Conclusions
Our results confirm previous findings about perceptions of HIV risk and provide additional insight into aging-related aspects of HIV risk for Latino women midlife and older