Parental Expressed Concerns about Silver Diamine Fluoride (SDF) Treatment.

Background: The staining associated with its caries arrest may be a deterrent for the use of Silver Diamine Fluoride (SDF). This study aims to elucidate the concerns that inform parents' perceptions and acceptance of SDF as a treatment option for their child. Study Design: We analyzed qualitative data obtained through an investigation in which parents attending a pediatric dental appointment participated in a survey, which included an open-ended question to evaluate their opinions about SDF staining. Thematic analysis of the comments, offered by the subsample of participants who replied to this question (n=43), yielded insights about perception of SDF therapy. Results: Most parents who provided comments were mothers (83.7%), college graduates (72.1%), primarily white (48.8%) or Hispanic (27.9%). Six themes emerged from the thematic analysis of the parents' responses: Esthetic Concerns, Psychosocial Concerns, SDF Treatment Process, Risks and Side Effects, Situational Benefits, and Dental Treatment Process. While many of the parents' comments are related to appearance, other topics that merit consideration when discussing SDF treatment were mentioned. Conclusions: Although parents are concerned about the esthetic impact of SDF, they understand the risks of alternative treatments and welcome information that will allow them to make an informed decision. Location of the cavities and visibility of the staining appear to heavily influence the decision to accept or reject this therapy.

Patients and family care givers' experiences around highly active antiretroviral therapy (HAART).

Even with advances in the medical management of HIV/AIDS, it remains an important cause of morbidity and mortality. Network members are a source of support and may be designated as the patient's surrogate therapeutic decision maker. However, little is known about the role of caregivers regarding highly active antiretroviral therapy (HAART) and adherence to medication, especially among low income and medically underserved HIV-infected individuals. The objective of this analysis was to explore patients and their caregivers' understanding, insight, and perceptions of HAART. This was a qualitative study conducted in an urban teaching hospital in the Bronx, NY, consisting of 144 adults with advanced HIV/AIDS and their informal/familial caregivers. Patients and caregivers completed in-depth interviews and brief questionnaires. The data were analyzed using standard qualitative techniques. Themes related to HAART efficacy, side effects, and adherence were identified in the discussions with both patients and their care providers. Looking for consistencies and discordant reports of patients-caregivers dyadic experience with HAART and their association with healthcare sentiment, it was found that the accounts of both members of the dyad were more likely to reflect positive feelings about the patient's healthcare experience when they shared perceptions about the treatment, and were more likely to have a negative viewpoint when the dyad was discordant about treatment. These findings support the importance for HIV healthcare providers to include both patients and their caregivers in discussions about HAART, in order to improve their understanding of and satisfaction with the medication, and, to ultimately contribute to patients' adherence. The study also suggests that healthcare teams may enhance dialog with patients and caregivers to create therapeutic decisions to accommodate the priorities and values of the patient and their family. Clinical, educational, and evaluating tools need to be further developed and evaluation to facilitate this process.

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence.

BACKGROUND: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. METHODS: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. RESULTS: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. CONCLUSIONS: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.

Factors associated with HIV-infected women's delay in seeking medical care.

Data from an investigation of HIV-infected African-American, Puerto Rican and non-Hispanic white women's treatment behaviour and decision-making are presented. Findings are based on a thematic analysis of the narrative accounts of 31 women who exhibited significant delay in seeing a physician about their HIV infection after testing positive for HIV antibodies. Analysis of the women's qualitative interview data indicated that a variety of barriers impeded them from actively pursuing treatment. The women's psychological responses to learning their serostatus were the most pervasive factors associated with delaying seeking care. Implications of the analysis for informing the design of secondary prevention efforts to move women into treatment earlier are discussed, such as the need to develop interventions or supportive services designed to assist women in coming to terms with their infected status.

Correlates of depressive symptomatology among adult daughter caregivers of a parent with cancer.

BACKGROUND: As a consequence of advances and changes in the detection and treatment of cancer, increasing demands are being placed on familial caregivers of elderly cancer patients. Understanding the factors that place familial caregivers at risk of poor psychological outcomes and threaten their ability to provide adequate care is important for maintaining chronically ill patients in the community. METHODS: Dyads comprised of 164 cancer outpatients (ages 60-90 years) and their adult caregiving daughter completed structured telephone interviews. Hierarchical regression was used to determine the individual and cumulative effect of five domains of potential predictors on the daughters' depressive symptomatology (Center for Epidemiologic Studies Depression Scale [CES-D]). RESULTS: The domains that were shown to be significantly predictive of a daughter's level of depressive symptomatology were daughter sociodemographics, constraints on/facilitators of caregiving, and caregiver burden. The domains of disease/patient characteristics and the daughter's appraisal of the caregiving situation were not found to be significant. The total model suggests that having a health-limiting condition, a greater sense of filial obligation, and greater caregiver burden were correlated with higher CES-D scores, whereas having graduated college, having other social roles, having favorable attitudes regarding her caregiving experience, and providing care in a greater number of domains of care were correlated with lower scores. CONCLUSIONS: These findings demonstrate the importance of focusing on situational factors that may function to constrain or facilitate caregiving when investigating caregiver depression.

Barriers and pathways to testing among HIV-infected women.

Through in-depth interviews the testing experiences of HIV-infected women were examined. The barriers that impeded the women from recognizing their at-risk status and from seeking testing once their vulnerability was acknowledged are discussed. Also described are the pathways that led women into testing. The data reveal that lack of understanding about risk behaviors, ignorance of their partner's risk practices, lack of information about HIV-related symptoms, and perceived invulnerability to infection were the principal barriers to women recognizing their at-risk status. The women's accounts also indicate that psychological factors--fear and denial--are the principal barriers to seeking testing once one acknowledges vulnerability. Finally, the data show that few women made a thoughtful proactive decision to be tested but rather seemed to be led by circumstances to learn their status, sometimes unwittingly.

Testing and treatment behaviour of HIV-infected women: white, African-American, Puerto Rican comparisons.

Findings from a study of the testing and treatment behaviour and experiences of African-American (n = 31), Puerto Rican (n = 30) and non-Hispanic white (n = 23) HIV-infected women are reported. All women were 20-45 years of age and had not yet been diagnosed with AIDS. Data for the analyses presented were gathered through an interviewer-administered questionnaire completed before respondents participated in an unstructured interview. The analyses examine race/ethnic differences in women's delays in seeking testing and medical care, and in sources and types of HIV-treatment. Most significant for primary and secondary prevention efforts, the findings suggest that a significant proportion of women who suspect they are infected may delay being tested, and further, a substantial proportion who learn they are seropositive may delay seeking medical care. Thus important opportunities among HIV-infected women for secondary prevention through timely antiviral and prophylactic treatment, and for primary prevention through risk-reduction counselling may be being missed in many cases.

Illness-related support and negative network interactions: effects on HIV-infected men's depressive symptomatology.

Data collected as part of a psychosocial study of gay and bisexual men's experiences of living with HIV infection as a chronic illness were examined to investigate the psychological impact of the perceived availability of illness-related support and negative illness-related network interactions in a sample of men from this population. The sample was comprised of 144 HIV-infected non-Hispanic white, African American, and Puerto Rican Men living in the New York City metropolitan area. Analyses found evidence of a conjoint (interactive) effect between perceived support and negative network interactions. There was no evidence of either perceived availability of illness-related network support buffering or negative illness-related network interactions amplifying the effect of HIV/AIDS-related physical symptomatology on depressive symptomatology.

Correlates of change in depressive symptomatology among gay men with AIDS.

Longitudinal data from a sample of gay men living with AIDS (N = 128) were used to assess the relationship of change in various individual and situational correlates with change in depression. Results of regression analyses suggest that changes in physical symptomatology, in the number of bed days, and in the perceived sufficiency of social support are significantly correlated with concurrent change in depressive symptomatology. There was no evidence of change in the perceived sufficiency of social support buffering or amplifying the relationship of change in physical symptomatology with change in depression. The findings illustrate the need for the use of panel data (i.e., repeated assessments of the same individuals) and the assessment of change in both distress and its correlates among individuals living with AIDS.

Adjustment of children facing the death of a parent due to cancer.

OBJECTIVE: To compare predeath and postdeath levels of depression and anxiety reported by a sample of children who lost a parent to cancer ("study children") with the levels reported by children in a community sample who did not experience such a loss. METHOD: T scores for depressive symptomatology (Children's Depression Inventory) and state and trait anxiety (State-Trait Anxiety Inventory) were compared. Both samples were weighted to control for multiple participants from the same family. Weights for children in the community sample were further adjusted to match the distribution of the two samples with regard to gender, age, and number of children in the household. Comparisons were made using t tests and chi 2 tests. RESULTS: Whereas study children reported significantly higher levels of depression and anxiety in the predeath period, levels of symptomatology reported for both measures postdeath were similar in both samples. DISCUSSION: The data suggest that while many children experiencing the loss of a parent to cancer report elevated levels of depression and anxiety predeath, by 7 to 12 months postdeath their reports of depression and anxiety are comparable with those of similarly situated children in the community who did not experience such a loss.

Depressive distress among the spouses of terminally ill cancer patients.

Bereaved spouses comprise a population at risk for psychological distress. Evidence suggests that spouses 55 years of age and younger are at increased risk of morbid outcomes, including major depressive episodes. Although the emotional impact of the sudden loss of a spouse has been well studied, less attention has been paid to the psychological impact of loss that is foreseeable, as in the case of a serious illness. In this study, data were obtained from pre-death interviews with 103 well spouses of terminally ill cancer patients. Subjects were white, 55 years of age or younger, and living with the patient and their child(ren) aged 7 to 16 years old. Depressive distress was assessed using the Brief Symptom Inventory. Fifty eight percent of males and 42% of females had scores for depressive distress in a clinically significant range. Regression analyses revealed gender was the most important predictor of the level of depressive distress reported, followed by patient's functional status and whether the well spouse quit work as a result of the patient's illness. The number of children 18 years or younger living in the household was inversely related to the level of depressive distress. The results of this analysis suggest that a large proportion of well spouses of patients with cancer who are also the parents of school-aged children may experience significant depressive distress during the terminal phase of their spouse's illness. These findings are important for planning future programs and improving existing ones for the spouses of terminal cancer patients.

Psychological well-being of gay men with AIDS: contribution of positive and negative illness-related network interactions to depressive mood.

While the positive functions of social network interactions in ameliorating the effects of life stress are widely documented and acknowledged, a growing body of research investigations has demonstrated that social relationships can concurrently be a source of stress and that actions intended to be supportive may instead be experienced as psychologically disturbing. Data from a study of the social support experiences of gay men diagnosed with AIDS were examined to determine the contribution to the men's depressive mood of positive and negative network interactions (n = 83). Although the results are consistent with the social support literature regarding the beneficial effect of positive network interactions for seriously-ill individuals, the findings also indicate that negative illness-related network interactions are associated with decreases in depressive mood, as indicated by scores on the Center for Epidemiological Studies of Depression Scale (CES-D). The findings also demonstrate the additive effects of positive and negative network interactions and clearly point out the value of investigating the complexity and multiple functions of social interactions.

Psychosocial issues in adults with transfusion-related HIV infection and their families.

Clinical data on all non-hemophiliac adult cases of transfusion-induced HIV infection (TI-HIV) referred for treatment to the Infectious Disease Service at Memorial Sloan-Kettering Cancer Center between 1987 to 1989 (N = 20) provided an opportunity to investigate the social and psychological impact of transfusion-induced HIV-infection. The specific psychosocial issues presented by this population which relate to the circumstances of their infection (i.e., blood transfusions) include: coping with personal feelings of victimization, sadness, anger, and isolation; decision-making concerning medical treatment; and re-building trust in relationships with medical care professionals. Counseling interventions with this population are described.

AIDS-related reasons for gay men's adoption of celibacy.

Since it was first recognized that human immunodeficiency virus (HIV) infection could be sexually transmitted, celibacy has been advocated by some as the only unequivocally effective adaptation for avoiding the risk of infection. Others, however, have countered that few will be willing to be celibate and, further, that such behavior may have adverse psychosocial consequences. As part of a qualitative study of gay men's sexual decision-making in the context of the AIDS/HIV epidemic, we identified a subsample of respondents who had adopted celibacy for varying periods of time as an adaptation to the threat of AIDS/HIV infection. A content analysis of these men's interviews revealed 5 principal themes relating their reasons for choosing celibacy.

Factors associated with urban gay men's treatment initiation decisions for HIV infection.

While a public health emphasis on primary prevention of human immunodeficiency virus (HIV) infection continues, it is recognized that large numbers of individuals are already infected. Efforts at secondary prevention focus on early medical intervention and may be effective in slowing progression to a diagnosis of AIDS. Understanding the factors that promote or impede seropositive individuals from receiving prompt medical treatment and complying with treatment regimens is essential to prolonging survival. During unstructured interviews in an ongoing study of sexual decision-making, 55 urban, gay, seropositive men spontaneously offered information about their treatment choices for their HIV infection. Findings regarding their considerations in initiating, delaying, or rejecting medical treatment are presented.

Caregiver burden and unmet patient needs.

Four-hundred eighty-three patients with cancer and their informal caregivers were studied. Patients reported on met and unmet needs in personal care activities (bathing and dressing), instrumental activities (heavy and light housekeeping, cooking, shopping), transportation (medical and general), and home health care (health/treatment assistance). A minority (18.9%) experienced an unmet need. Hierarchical logistic regression was used to identify significant predictors of any unmet need. Patients were more likely to report any unmet needs when their illness/treatment resulted in restricted activity days, when their financial resources were reduced enough for them to apply for Medicaid or Public Assistance, or when their caregivers were not their spouses. Although in general, the likelihood of an unmet need decreased as the number of domains of assistance provided by the caregiver increased, if that care was associated with a high level of burden, the odds of a patient reporting an unmet need actually increased.

The relationship of spousal caregiver burden to patient disease and treatment-related conditions.

The prevalence and intensity of different caregiving burdens experienced by spousal caregivers and the association of these burdens with various patient illness and treatment-related conditions were examined in a sample of 295 married cancer patients and their spouses. The spousal caregivers were confronted with a wide range of burdens associated with their caregiving responsibilities. Objective, as compared to subjective, caregiver burdens were more strongly associated with patient disease and treatment-related conditions. Compared to husbands, wives experienced more burden and these burdens were more strongly associated with the various disease and treatment conditions.

Suicidal ideation in adolescence: Depression, substance use, and other risk factors.

The interrelationships of depression and suicide with adolescent drug use, delinquency, eating disorders, and the risk factors for these different problems were investigated among 597 9th and 11th graders in an urban high school. There is a strong association of drug use with suicidal ideation among girls, and a stronger relationship with attempts among girls and boys. Suicidal youths are ill-adjusted and display a lack of attachment and commitment to family and school. Causal models indicate that poor interpersonal interactions with parents, absence of peer interactions, and life events lead to depression, which in turn leads to suicidal ideation. Depressive symptoms are the strongest predictors of suicidal ideation. Among females, depression predicts drug involvement, and in turn, drug use increases suicidal ideation. Drug use is only one class of problem behaviors that constitutes a risk factor for suicidal behavior in adolescence. Delinquency and eating disorders also have direct effects on suicidal ideation beyond those of depressive affect. As for drug involvement, these problem behaviors are more predictive of suicidal behavior among girls than boys. Similarity and specificity of the predictors for problem behaviors within and between the sexes are discussed. Although young women use drugs to handle feelings of depression, drug use appears ineffective in the long run in relieving these depressive feelings. Understanding the dynamics of suicidal ideation in adolescence has important public health implications, since ideation is a strong predictor of attempts, especially among females.

Perceptions of parental competence while facing the death of a spouse.

Healthy parents' perceptions of their competence to meet children's needs during the terminal illness of the other parent were measured on five major domains of parent-child relationships and parental functioning central to children's healthy development. Significant declines from pre-illness competence were perceived, of which the greatest were in emotional sensitivity and responsiveness, and ability to set limits and impose discipline. Implications for the development of preventive intervention strategies are discussed.

Cessation of illicit drug use in young adulthood.

The predictors of cessation of marijuana and cocaine use were examined in a longitudinal cohort of young adult men and women (N = 1222). Six domains of predictors were examined: socioeconomic background variables, participation in the social roles of adulthood, degree of drug involvement, social context of drug use, health status, and deviant activities and conventionality of life experiences. Factors that predicted cessation of use in adulthood paralleled those that predicted lack of initiation in adolescence: conventionality in social role performance, social context unfavorable to the use of drugs, and good health. A most important predictor was prior degree of involvement in licit and illicit drugs. In multivariate analyses, degree of prior drug involvement remained the strongest predictor of drug cessation for of marijuana use, while friends' use was the most important for cocaine. Those who use drugs in response to social influences are more likely to stop using them than those who also use drugs for psychological reasons.