Biomedical subjects

J Telfair

Publications and source records attributed to J Telfair.

9 recordsLinked to original sources

PubMed2000

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) was comprised of nine questions relating to participants' perceptions of their ability to function on a day-to-day basis and to manage SCD symptomatology (e.g. episodes of pain). The SCSES demonstrated good internal consistency, discriminant validity, and convergent and predictive validity, both with previously validated measures of related constructs as well as with reported SCD symptomatology. Overall, the instrument appears to be reliable and valid for assessing clients' self-efficacy for engaging successfully in day-to-day activities despite having SCD. Future investigators may wish to examine temporal and causal links between alterations in self-efficacy and changes in adjustment to sickle cell disease; the SCSES provides a psychometrically sound tool with which to investigate these phenomena.

Activities of Daily Living↗

PubMed2000

Adolescents with sickle cell disease: determinants of support group attendance and satisfaction.

Support groups have the potential to mitigate some of the developmental and condition-specific psychological and social issues common to sickle cell disease (SCD), yet little is known about how adolescents with SCD view and use these groups. As part of a larger study, 79 adolescents with SCD completed questionnaires assessing reasons for attending or not attending support groups, level and type of help received from group participation, group satisfaction, and attendance. This article reports on findings descriptively. Professionals can enhance their effectiveness as providers of social and mental health services by understanding the role that support groups play in the overall well-being of adolescents with SCD.

Adolescent↗

PubMed2000

Socioeconomic distress and health status: the urban-rural dichotomy of services utilization for people with sickle cell disorder 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. Three indices were developed using clients' medical, psychosocial and socioeconomic characteristics for the purpose of analyzing the urban-rural difference in treatment for sickle cell disease. The study observed a wide disparity in these indices between urban and rural population groups. Also, differences were observed in the utilization of services and clients' health status. The findings suggest that utilization of services is directly related to socioeconomic condition facing clients and clinic distance from clients. They further suggest that people in rural areas who have high distress levels and are far from clinics have limited access to health care. The limited availability of medical and health care in rural areas, as well as other support systems calls for an increase in community based healthcare services. These findings should be of particular interest to the state level sickle cell disorder program in North Carolina and other areas with a large rural population. Enhanced support for all persons with sickle cell disorder in North Carolina, particularly those in rural areas, is critical.

Adolescent↗

PubMed1998

Does race influence the provision of care to persons with sickle cell disease? Perceptions of multidisciplinary providers.

This study examined whether multidisciplinary 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 Influence of Patient Race on Provision of Health Care Services Index (Cronbach's alpha = 0.77). Results suggest that African American HCPs were more likely to perceive race as an influence along all scale items, whereas Caucasian and other race HCPs did not. Female HCPs and those who serve adults were more likely than male HCPs and those who serve children to perceive race as having an influence on the quality of health care. Findings suggest a need for the examination of the health care delivery systems in which persons with SCD receive care to determine if race does, in fact, affect the delivery of health care and to explain the discrepancies in the perceptions of the HCPs.

Adult↗

PubMed1994

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 access 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, and expectations of adolescents, young adults and primary caretakers with regard to transfer to adult care. METHODS: Participants were recruited from clinics and programs participating in the Duke/UNC Comprehensive Sickle Cell Program. Using a cross-sectional survey design, young adults (n = 60), adolescents (n = 36) and primary caretakers (n = 25) were administered the Sickle Cell Transfer Questionnaire (SCTQ). RESULTS: Adolescents and young adults with SCD were primarily concerned about how they would pay for medical care and how they would be treated by adult providers. Caretakers were concerned about their teens leaving pediatric care and assuming responsibility for medical care. All three groups reported mixed emotions about leaving pediatric care. There was consensus among the respondents regarding the need for transfer programs and what they should offer. Bivariate analysis revealed that age, education level, and disease severity were statistically significant co-factors influencing the feelings, concerns and opinions of the study participants. CONCLUSION: Future longitudinal experimental research is needed to corroborate the results of this study and to assess the effectiveness of transition-related intervention programs for adolescents with SCD and their families.

Adolescent↗

PubMed1994

Factors in the long term adjustment of children and adolescents with sickle cell disease: conceptualizations and review of the literature.

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, such as anxiety and depression affecting adjustment, are the most studied. However, it will be pointed out that social variables such as family, school, and peers, also play a major role in this process. Furthermore, in keeping with the approach of this special collection, these psychological issues will be discussed within a developmental context. Clinical teams and practitioners are encouraged to take a longitudinal-biopsychosocial approach in addressing the needs of these children and their families. By doing so, they will be able to meet the present and long term psychological, social, educational, as well as medical needs of children and adolescents with sickle cell disease and other chronic conditions, and their families. This approach will also allow professionals to recognize and utilize the strengths of this population in the promotion of their overall well-being.

Adaptation, Psychological↗

PubMedDate not supplied

Factors that influence adolescent adaptation to 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 biomedical risk factors and adaptation. METHODS: Ninety African American adolescents from the multisite Cooperative Study of Sickle Cell Disease were recruited to complete a battery that included measures of psychosocial status and psychological adaptation. Data regarding their health status were collected from medical records. RESULTS: The findings revealed that intrapersonal (self-esteem, social assertiveness), stress-processing (use of social support), and social ecological factors (family relations) were significant predictors of adaptation; however, biomedical factors did not predict adaptation. There was no evidence that psychosocial factors moderated the relationship between biomedical risk factors and adaptation. CONCLUSIONS: Psychosocial factors proved to be better predictors of adaptation than biomedical risk factors. Additional research is needed to better understand the nature of the interrelationships among biomedical risk factors, psychosocial factors, and adaptation.

Adaptation, Psychological↗

PubMedDate not supplied

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 prospective cohort study of African American adults with sickle cell disease. Disease-specific perceptions of coping self-efficacy and indices of disease severity, health care utilization, and psychosocial adjustment were assessed by use of standardized questionnaires administered by trained clinicians. RESULTS: Perceptions of self-efficacy for coping with sickle cell disease were moderately stable across the 12-month study period. At baseline (N = 147), significant inverse relationships, measured with Pearson correlations, were noted between self-efficacy and the following variables: physical symptoms, psychological symptoms, pain severity, and number of physician visits over the preceding 12 months (p <.01). Similar relationships with self-efficacy were noted at the 1-year follow-up (N = 104) period for measures of physical symptoms, psychological symptoms, and pain severity (p <.01). In multiple-regression models, baseline self-efficacy scores predicted changes over the 1-year study period in physical and psychological sickle cell disease symptomatology. Moreover, changes in self-efficacy from baseline to 1-year follow-up were significantly and independently related to changes in physical symptoms, psychological symptoms, and pain ratings from baseline to 1-year follow-up. CONCLUSIONS: Self-efficacy beliefs among African American adults with sickle cell disease are inversely related to reported disease symptomatology, and these relationships persist across time. Future investigations should examine the mechanisms through which relationships between self-efficacy and adjustment to sickle cell disease are effected, as well as the feasibility and effectiveness of enhancing self-efficacy beliefs as a means of improving adjustment to sickle cell disease.

Adaptation, Psychological↗

PubMedDate not supplied

Sickle cell anemia.

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Anemia, Sickle Cell↗