Dorothy Jones Jessop

Functional status II(R). A measure of child health status.

Few measures are available to assess the health status of the growing numbers of children who now survive long-term with chronic physical disorders. A Functional Status Measure, FS I, that had considerable promise for measuring individual child health status and characterizing populations was developed in 1978. This paper describes a revised version of that measure. Data were collected using a new sample of 732 children (aged 0 to 16 years) with and without chronic physical conditions in order to assess the psychometric properties of the new instrument. The FS II(R) has both a long (43-item) and a short (14-item) version. The long version has a total score derived from a one factor solution and a two factor solution consisting of General Health and Stage Specific factors for each age group. The 14-item version of FS II(R) uses a common core of items across the entire age span. Internal consistency estimates (alphas) for the factor-based and 14-item versions are all ≥ 0.80. At each age, long and short versions behave similarly in a wide range of tests of discriminant, construct, and content validity—strong support that they constitute a common measure. The FS II(R) has excellent psychometric properties and provides concise measures of health status of children spanning the entire childhood age range from 0 to 16 years. It has particular strengths for the measurement of health status of children with chronic physical conditions who are not disabled.

The impact on family scale revisited: further psychometric data.

ABSTRACT. This article presents additional psychometric data and a revised scoring procedure for the widely used Impact on Family Scale. The analyses were conducted with three datasets produced by validation studies conducted at the originating institution with populations drawn from the same inner-city communities as the original sample. The instrument has one robust factor representing overall family impact. In addition, there are two subsidiary sets of items (financial impact and sibling impact) of possible interest to future researchers. The correlation of the previously published and new Total Score is .97. Data indicate that the Impact on Family Scale is an easily administered, reliable, and valid measure of a family member’s perception of the effect of a child’s chronic condition that can be used across diagnostic groups. The Impact on Family Scale fills a gap in the measurement of the psychological and social consequences of chronic disorders in childhood that can be useful in clinical and health services research.

Chronic Childhood Illness and Maternal Mental Health

The relationship between the health status of a child and the psychiatric symptoms of a mother is examined for an inner-city sample (n = 209) of chronically ill children with heterogeneous physical diagnoses. Whereas no relationship exists between the mothers psychiatric symptoms and a medical providers report of the burden that the childs condition entails, there is a relationship between the functional status of the child and the mental health status of the mother. Children with more functional limitations have mothers who are more symptomatic. The presence of other stressors in the family, familial impact of the illness, poor physical health of the mother, and the absence of a confidant for the women are also associated with the mothers psychiatric symptoms in a multivariate analysis that includes traditional predictors of womens mental health. In contrast with the results from more general population studies, a greater number of children may be protective for a mother of a child with a chronic illness. J Dev Behav Pediatr 9:147–156, 1988. Index terms: chronic illness, mental health of mothers.

Barriers to breast cancer screening for low-income Mexican and Dominican women in New York City

The proportion of Mexican and Dominican women has increased rapidly in New York City and in other urban areas, and breast cancer screening rates continue to be lower for Latina women as a whole, but particularly for some nationality sub-groups. The current analysis explored the reasons why Mexican and Dominican women from medically underserved communities in New York City do not seek breast cancer screening. Data were collected through interviews with 298 Mexican and Dominican women aged 40–88 years; the interviews included an open-ended question on the barriers women face in seeking screening. The three most commonly cited barriers were not taking care of oneself (descuido) (52.3%), lack of information (49.3%), and fear (44.6%). Women who had been screened cited fear, pain, or other personal barriers more often, but women who had never had a mammogram cited cost or other logistical barriers. Responses from Dominican and Mexican women were significantly different, with Mexican women more often citing shame or embrarrassment and Dominican women more often citing fear. The dependent variable, barriers to screening, was grouped into major categories. When sociodemographic factors were controlled for, the effect of ethnicity disappeared. Multivariate logistic regression revealed that women with a source of health care were less likely to cite any logistical barriers, but significantly more likely to report only personal barriers (such as fear ordescuido). The analysis indicated that personal barriers were very prevalent in the communities studied. It may not be sufficient merely to increase access to breast cancer screening services for low-income Latinas: even when women have a source of health care, personal barriers may prevent many women from seeking screening. Outreach programs need to be tailored to the target communities as there are significant differences among groups of Latinas. Targeted outreach programs must work in tandem with programs to increase access to ensure that both personal and logistical barriers to screening are addressed.

Antiretroviral therapy and declining AIDS mortality in New York City.

Objective. This study estimates the impact of Highly Active Antiretroviral Therapy (HAART) and other antiretroviral therapy combinations on reducing mortality risk for a cohort of HIV-infected persons living in New York City. Materials and methods. Data for this study come from the CHAIN project, an ongoing multiwave longitudinal study of HIV-infected persons is living in New York City (n = 700) initiated in 1994. The study sample is drawn from the clients of 43 medical and social service agencies and is broadly representative of New York City residents, who were aware of their positive serostatus at time of enrollment. Occurrences of deaths were obtained through routine field tracking and searches of death certificates and an online death registry. Information on other study variables was obtained through in-person interviews. A Cox proportional hazard model was applied to estimate the effects of medication on mortality risk. Results. Mortality rates for the CHAIN cohort dropped steadily from a high of 131 deaths per 1000 persons/year in 1995 to 31 deaths per 1000 persons/year in 1999, with the historically low mortality rates continuing through 2000. Current use of HAART was associated with a 50% reduction in mortality risk (hazard ratio = 0.51, P <0.01). Conclusions. These results demonstrate that in the case of HAART, the therapeutic benefits of an innovative but costly medical treatment are reaching populations that traditionally have poor access to quality health care.

Assessing psychosocial adjustment of children with chronic illnesses: A review of the technical properties of PARS III

Four groups of investigators in the Research Consortium on Chronic Illness in Childhood have used the Personal Adjustment and Role Skills Scale (PARS) III to assess the psychosocial adjustment of children with chronic physical illnesses and no mental impairment. The PARS III consists of 28 items that measure psychosocial functioning in six areas: peer relations, dependency, hostility, productivity, anxiety-depression, and withdrawal. Analyses of the measures reliability and validity, using a total combined sample of 450 school-age children (ages 5–18 years) with a variety of chronic illnesses and three comparison samples of healthy children, provide evidence that the PARS III can be used successfully to assess psychosocial adjustment of children with chronic illnesses and no cognitive impairments. J Dev Behav Pediatr 11:116–121, 1990. Index terms: chronic illness, psychological development, social skills, behavior, measurement.

Developing a Measure of Unmet Health Care Needs for a Pediatric Population

BACKGROUNDnQuantified measures of unmet health care needs can be used to evaluate health care interventions, assess the impact of managed care, monitor health status trends in populations, or assess equity of access to medical care across population subgroups. Such a measure needs to be simple, relatively easy to obtain, inexpensive, and appropriately targeted to the population of interest.nnnOBJECTIVEnTo develop a measure of unmet health care needs that is specifically targeted to a pediatric population.nnnSUBJECTSnStudy participants consisted of children, aged 1 to 5 years (n = 1,031), and adolescent mothers, aged 13 to 19 years (n = 172), predominantly from poor, minority families in New York City.nnnRESEARCH DESIGNnBased on a measure, the symptoms-response ratio, developed for all age groups, this study replicated Taylors procedures specifically for children and adolescents. Respondents were asked if they had experienced a set of physical symptoms and if they saw a doctor in response. A panel of pediatricians rated the same symptoms as to whether health care should be sought.nnnRESULTSnThe measure achieved adequate inter-rater reliability and good construct validity. The childrens overall use of health services did not differ from the pediatric panels expectations, but with differing degrees of unmet needs by symptom. Adolescents sought care less often than the expert panel members believed they should.nnnCONCLUSIONSnThe symptoms-response ratio provides a good balance of a simple and inexpensive measure while yielding a fair estimate of unmet needs for primary care. This analysis created a pediatric measure targeted to the needs of young children and adolescent females.

A Service Delivery Program and Its Evaluation A Case Study in the Sociology of Applied Research

Descriptions are rare of instances in which true experimental designs have been implemented in evaluating ongoing programs. This article is a case study of a health service delivery program and the classical pretest-posttest randomized experiment that evaluated it. The main theses are (1) that the research developed was based on the values and interests of the persons and institutions involved, and concordance in interests and values among the severalparties was responsible for success in implementing the rigorous experimental design; and (2) that the program being evaluated and the research evaluation affect each other in significant ways, some intended and others unanticipated.

62 THE EFFECTS OF CHRONIC CHILDHOOD ILLNESS ON THE MOTHER'S PSYCHOLOGICAL ADJUSTMENT

There are conflicting data regarding the impact of chronic childhood illness on the family unit in general and more particularly on the mothers psychological adjustment (MPA). In spite of evidence that the burden of care of the child falls predominantly on the mother, there are few analyses of the effects of the childs illness on mothers mental health using sound measures. Data from a study of 219 inner-city children with chronic illness indicate that there is no relation (tau-b=.01) between the burden of the childs condition as reported by the provider and MPA. There is, however, a significant (p<.001) but modest association (tau-b=.21) between the childs functional status and MPA. Additionally the effects of the childs condition are minimized by the presence of various social and demographic characteristics including health insurance, social supports, absence of other stressors, and the presence of more than one adult in the home. The absence of these positive characteristics appears to exacerbate the situation and produce significant and moderately severe mental health deficits for the mother (as high as tau-b=.46). Such analyses can be helpful to clinicians interested in identifying characteristics of families which predict the need for further intervention to maximize the functioning of individual family members and minimize secondary sequalae of chronic illness. The results also suggest kinds of interventions which may be helpful.

694 EFFECTS OF FAMILY CHARACTERISTICS ON THE RELATIONSHIP BETWEEN THE FUNCTIONAL STATUS OF CHRONICALLY ILL CHILDREN AND THEIR PSYCHOLOGICAL ADJUSTMENT

The extent to which childrens psychological adjustment is effected by the presence of chronic illness is a subject of much controversy. Data obtained upon entry to a study of children with chronic illness show that among the 81 children ≥ 5 years there is little relationship between adjustment and some traditional morbidity measures such as days hospitalized and days in bed. There is, however, a relationship between the childs functional status (FS) and psychological adjustment (PA). While this relationship is not dramatic for the sample as a whole (tau-b=.23), it varies from moderately strong to nonexistent among subgroups defined by social, family, and demographic characteristics. A characteristic such as the family composition alters the relationship between FS and PA from tau-b=.89 for mothers and another adult to tau-b=.03 where both parents are present in the home. The relationship between FS and PA is minimal where the mothers or fathers are at least high school graduates, or when the mother is presently employed, or has social supports in her life. These variables may be important buffers of the impact of illness on the childs adjustment. Such interactional effects may help to explain current controversies over the existence and importance of the relationship between the childs chronic condition and adjustment.