|African American adolescents with sickle cell disease: Support groups and psychological well-being
||There has been little systematic study of the impact of support groups on the psychological well-being (PWB) of adolescents with sickle cell disease (SCD). Questionnaires, administered by group leaders of 12 SCD support groups, were completed and ret...
|The Association of Child Condition Severity with Family Functioning and Relationship with Health Care Providers Among Children and Youth with Special Health Care Needs in Alabama
||Objective: The purpose of the present study is to assess how the severity of a child’s condition affects family functioning and the relationship with health care providers among children with special health care needs in Alabama. Methods: Using the d...
|Bridging Science and Practice: The Integrated Model of Community-Based Evaluation
||A trend in community-based evaluation studies is to include everyone affected by the work, the community, administrators and participants, in their design and implementation. This concept has been accepted by communities and community evaluators, but...
|The Community as Client: Improving the Prospects for Useful Evaluation Findings
||Interviews with leaders of community-based health initiatives help define meaningful evaluation in contexts in which communities are called on to contribute consent, resources, or participation in program development and research.
|Development and Testing of a Tool to Assess Self-Care Agency in Adults with Sickle Cell Disease.
||This article summarizes the psychometric evaluation of the Chronic Illness Assessment Interview for Sickle Cell Disease (CIAI-SCD), an instrument based on a model of self-care for adult patients with chronic medical conditions. The CIAI-SCD was admin...
|Does Race Influence the Provision of Care to Persons with Sickle Cell Disease?: Perceptions of Multidisciplinary Providers
||This study examined whether multi-disciplinary health care providers (HCPs) perceived race of persons with sickle cell disease (SCD) as an influence in the delivery of health care. A total of 227 multidisciplinary HCPs completed the three-item Influe...
|Educational Attainment as a Social Determinant of Health.
||A review of the current literature on the relationship between
health outcomes and level of education provides points for
consideration by providers and policymakers wishing to
address social and economic determinants of health and
|Evaluation of a Disease-Specific Self-Efficacy Instrument in Adolescents with Sickle Cell Disease and its Relationship to Adjustment
||The psychometric properties of a disease-specific instrument used to assess self-efficacy in adolescents with sickle cell disease, the Sickle Cell Self-Efficacy Scale, were evaluated in a sample of 131 adolescents ranging from 11 to 19 years of age. ...
|Factors in the Long-Term Adjustment of Children and Adolescent with Sickle Cell Disease
||This paper focuses on the psychological and social factors that influence the adjustment process of children and adolescents with chronic conditions, primarily sickle cell disease. A review of the literature will reveal that psychological variables, ...
|Factors that influence Psychosocial Functioning in Adolescents with Sickle Cell Disease
||Objective: To examine whether psychosocial factors play a more important role than biomedical risk factors in predicting adolescent adaptation to sickle cell disease (SCD) ; to determine whether psychosocial factors moderate the relationship between ...
|Findings from a community education needs assessment to facilitate the integration of genomic medicine into primary care.
||Purpose: To assess the lay public's knowledge of, and beliefs about, genetics and genetic testing to create an educational initiative that promotes acceptance and utilization of genomic medicine in primary health care.
Methods: A telephone survey ...
|The impact of SCHIP enrollment on adolescent-provider communication
Effective communication between physicians and adolescents is critical to convey health information, provide counseling and identify emerging health problems. This article addressed two questions: (a) After an adolescent enrolls in a State C...
|Implementation of culturally and linguistically competent policies by state Title V Children with Special Health Care Needs (CSHCN) programs.
||Objective This descriptive study was intended to identify actual actions, steps and processes of Children with Special Health Care Needs (CSHCN) programs to develop, implement, sustain and assess culturally and linguistically competent policies, stru...
|Improving the Prospects for a Successful Relationship between Community and Evaluator
||The success of a community-based program evaluation can be enhanced by using a screening tool to delineate the program’s evaluative needs, resources, and commitments.
|The influence of motivational messages on future planning behaviors among HIV concordant positive and discordant couples in Lusaka, Zambia.
||In Zambia the HIV/AIDS epidemic has resulted in many single female-headed households. Strong patriarchal laws and customs prevent widows and children from maintaining economic assets. This study examines the impact of a video-based motivational inter...
|Knowledge and perceptions of couples’ voluntary counseling and testing in urban Rwanda and Zambia: A cross-sectional household survey
||Background: Most incident HIV infections in sub-Saharan Africa occur between cohabiting, discordant, heterosexual couples. Though couples' voluntary HIV counseling and testing (CVCT) is an effective, well-studied intervention in Africa < 1% of couple...
|Long-term follow-up after diagnosis resulting from newborn screening: statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children.
||The US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children provides guidance to reduce the morbidity and mortality associated with heritable disorders, with a special emphasi...
|The Process of Selling a Community Evaluation to a Community: The Cumberland County Experience
||How to engage local program stakeholders meaningfully in evaluation is a continuing challenge for many community based program evaluators. Lessons learned from a Smart Start evaluation in North Carolina are offered.
|Promotion of couples' voluntary counseling and testing for HIV through influential networks in two African capital cities.
||Background: Most new HIV infections in Africa are acquired from cohabiting heterosexual partners. Couples'
Voluntary Counselling and Testing (CVCT) is an effective prevention strategy for this group. We present our experience
with a community-based...
|Providers' Perspectives and Beliefs Regarding Transition to Adult Care for Adolescents with Sickle Cell Disease
||Until recently, few children with chronic illnesses such as sickle cell disease (SCD) lived past late adolescence. Substantial reductions in mortality mean a growing number of adolescents with SCD reach adulthood. Consensus among researchers and heal...
|Public Health Social Work Competencies
||Public Health Social Work uses social epidemiology principles to assess and
monitor social problems affecting the health status and social functioning of at risk
populations within the context of family, community, and culture. Professional standar...
|Quality Health Care for Adolescents with Special Health-Care Needs: Issues and Clinical Implications
||Assuring quality health care for the diverse U.S. adolescent population is a subject of growing concern among health-care providers and policy makers. Health-care services and policies must appreciate that experiences of adolescents with special heal...
|Reliability and validity of a Self-Efficacy Instrument Specific to Sickle Cell Disease
||The psychometric properties of a new, 9-item scale measuring disease-specific perceptions of self-efficacy were investigated in a community-based sample of adults (N = 83) with sickle cell disease (SCD). The Sickle Cell Self-Efficacy Scale (SCSES) wa...
|Screening U.S. College Athletes for Their Sickle Cell Disease Carrier Status.
||There are many issues surrounding the screening of collegiate athletes for their sickle cell disease carrier status (or sickle cell trait), a genetic condition. This paper summarizes the establishment of expert advice given to the Secretary's Advisor...
|Self-Efficacy as a Predictor of Adult Adjustment to Sickle Cell Disease: One-Year Outcomes
||Objective: The present study prospectively investigated the role of self-efficacy in predicting disease symptomatology and health services utilization for adult patients with sickle cell disease.
Methods: These data are derived from a 12-month prosp...
|Socioeconomic Distress and Health Status: The Urban-Rural Dichotomy of Services Utilization for People with Sickle Cell Disorders in North Carolina
||Research on sickle cell disorder has not focused attention on the socioeconomic background and geographic distribution of people with the disease. This study examines 1,189 persons with sickle cell disorder in North Carolina during 1991 to 1995. Thre...
|Transfer As a Component of the Transition of Adolescents with Sickle Cell Disease to Adult Care: Adolescent, Adult and Parent Perspectives
||Purpose: There are no empirical studies which assess the transfer needs/concerns of adolescents and young adults with sickle cell disease (SCD) and their primary caretakers. The overall purpose of this research was to determine the issues, concerns, ...
|Transition from pediatric to adult care in sickle cell disease: Establishing evidence-based practice and directions for research.
||Transition of young adults with sickle cell disease (SCD) from pediatric to adult medical care is an important priority, given medical advances that have transformed SCD into a lifelong chronic condition, rather than a disease of childhood. Successfu...