Illness disclosure and mental health among women with HIV/AIDS

The current study examines two contrasting models of the relationship between illness disclosure and mental health among an ethnically‐diverse group of women with HIV/AIDS. In the first, and commonly accepted model, illness disclosure predicts enhanced mental health status. In the second or alternate model, based on the stigmatization that accompanies HIV/AIDS infection, illness disclosure predicts poorer mental health. We also explore an alternate interpretation for this second model, namely that the mental health status of participants is predictive of their levels of disclosure. A total of 176 women from three major ethnic groups were interviewed and assessed during the baseline visit for a comprehensive longitudinal study. Results showed that these women constituted a highly‐disclosed population; over one‐third of them had disclosed their HIV status to their entire social networks. Contrary to expectation, disclosure was unrelated to mental health among the African‐American (n = 72) and European‐American (n = 47) women. Among the Latina women (n = 57), however, greater disclosure was related to higher levels of depression, psychological distress, and reported pain. Regression analyses controlling for age, education, and illness severity showed that disclosure makes a small but independent contribution to the prediction of mental health status. Thus, among the Latinas, the data were consistent with both the stigma model and the hypothesis that greater distress predicts wider disclosure. General patterns of disclosure are described and possible explanations for the inconsistent relationships found between disclosure and mental health among the three ethnic groups are considered. Copyright © 2000 John Wiley & Sons, Ltd.     

Experiences of the health care delivery system in a rural South African setting

This exploratory study aimed to examine health care provider work-related experiences in a rural South African context. Participants were a convenient sample of 12 medical practitioners (private sector = 55%). The practitioners responded to an open-ended question on their health care delivery-related experiences. Thematic analysis of the data revealed that the medical officers experienced both care provider fatigue and satisfaction from their work roles. Experiences of care provider fatigue were characterised by stress, anxiety, hopelessness, depression, burnout, frustration, and anger. Care provider satisfaction was associated with happiness, ability to cope, security, conscience, and commitment. Job retention and satisfaction of the health care providers were dependent on material and manpower resourcing of health services.     

Caregivers’ Level of Trust in Their Children's Health Care Providers

Trust in healthcare providers is associated with clinical outcomes among adult patients. Children with disabilities have complex health needs that place stress on caregivers. Consequently, they are increasingly likely to rely on their children's health care providers to ensure children's health care needs are met. However, no studies have explored factors affecting caregivers’ trust in their children's providers. We assessed caregivers’ trust in their children's providers and identified predictive factors of trust. The results indicate that children's disability condition, functional status, age, the providers’ specialty, and the type of health care plan are significant predicators of caregiver's trust. Specifically, caregivers of children with emotional/behavioral disabilities and children with poor physical or emotional/behavioral functioning reported less trust in their children's providers compared to caregivers of children without physical disabilities or no disability and those having higher levels of physical or emotional/behavioral functioning. In addition, caregivers of younger children had more trust compared to caregivers of older children. Caregivers of children enrolled in a managed care plan for physical health care reported less trust compared to caregivers of children in other organizational arrangements. Finally, caregivers reported more trust in physical health providers compared to mental health providers.     

Exploring the “New” Frontier of Spirituality in Health Care: Identifying the Dangers

Enthusiasm is growing in nursing and medicine for addressing spirituality and religious needs in patient care. We urge caution and stress the need for greater awareness of the dangers involved. The first danger is the lack of any attention given to how informed consent might be relevant to the topic of patient autonomy in spiritual health care decisions. The second danger is that the major health care providers, nursing and medicine, are not adequately educated to provide such care. The third danger is that we have not yet sufficiently clarified the roles of the various providers and as a consequence coordination of quality spiritual care is in jeopardy.     

Identifying Training Needs of Health-Care Providers Related to Treatment and Care of Transgendered Patients: A Qualitative Needs Assessment Conducted in New England

SUMMARY

The Transgender Training Project of the New England AIDS Education and Training Center has been providing training on transgender-related issues to health-care providers in the New England region since 1999, having trained nearly 600 providers in that time. The Transgender Training Project embarked on a study during the 2001–2002 grant year to interview providers of HIV-related care and advocacy on their knowledge and experience with working with trans-gendered people and to assess training needs to increase their effectiveness with transgendered clients.

The methodology consisted of face-to-face interviews with 13 providers of HIV treatment and care who are affiliated with the New England AIDS Education and Training Center network to discuss clinical challenges in working with transgendered people.

In this exploratory study, we found that providers had:

1. Desire to treat transgendered patients respectfully but admitted discomfort and lack of tools for specific interviewing/assessments.

2. Experience with a range of transgendered patients, but lack of information on distinctions among transgendered experiences.

3. Restrictions based on time constraints that create an overarching barrier in building trusting relationships with clients, and trusting relationships are integral to quality care.

4. Concern and frustration with lack of information, studies and research.

5. Concern and frustration with lack of treatment guidelines, (or ability to access them), referral contacts and ways to advocate for transgender clients.

6. Belief that training by transgendered people themselves was an essential teaching element.

These results point to the need for the development and dissemination of specific training materials and resources for health-care providers serving transgendered people living with or at risk for HIV.     

Disclosing Fathers’ HIV Infection to their Sons in Togo

This study examined the views of parents living with HIV/AIDS (PLWHA) and healthcare providers in Togo, on the appropriateness of HIV-infected fathers disclosing their serostatus to their sons. In early 2016, 177 PLWHA (95 mothers and 82 fathers) and 123 healthcare providers (20 physicians, 24 nurses, 41 nurse’s aides, 13 health counsellors, and 25 psychologists) judged the appropriateness of disclosure in 48 scenarios. These scenarios were composed by systematically varying the levels of four factors derived from previous studies on disclosure of bad news: the visibility of symptoms, the son’s level of psychological robustness, the son’s age, and whether the mother was involved in the decision. Seven qualitatively different positions were found: Depends on Son’s Maturity (20%), Depends on Mother’s Involvement in the Decision and Son’s Maturity (19%), Always Quite Appropriate (16%), Depends on Visibility of Symptoms and Son’s Maturity (15%), Depends on Mother’s Involvement in the Decision (14%), Depends on Son’s Age (9%), and Don’t Tell to Adult Son (7%). Healthcare providers (59% of nurses and 25% of physicians) were more likely than PLWHA (10%) to endorse the view that disclosure is Always Quite Appropriate. These findings suggest that interventions to encourage and support parental HIV disclosure in Togo, and possibly in other sub-Saharan African countries, must not be “one size fits all”, but must be tailored in design and implementation to address parents’ differing views, fears, and needs.     

The Interface between Mental Health Providers, Families, and Schools: Parent and Child Attitudes about Information-Sharing

Youth with emotional and behavioral disorders (EBD) are at an increased risk for school problems and negative consequences into adulthood, increasing the need for collaboration between families, school personnel and mental health providers. Current treatment guidelines emphasize the importance of information-sharing between providers and schools, yet few studies have addressed parents’ or students’ attitudes and preferences about this process or about the disclosure of mental health-related information to school professionals. Using a sample of 73 pairs of parents and their adolescents seeking outpatient treatment, this study assessed parental and adolescent attitudes about disclosure of mental health treatment information to school personnel. The majority of parents reported that the school should be informed that their adolescent was receiving counseling or medication for EBD, and that they should be the primary informant, rather than providers. By comparison, adolescents preferred more discretion about their involvement in treatment. Taken together, the study results highlight a number of implications relevant to the therapeutic relation and the process of obtaining and sharing mental health-related treatment information with various school personnel. Future research directions regarding the consultative and collaborative process with school personnel are also discussed.     

The Complexity of Women’s Lives: Decision-making about Maternal HIV Disclosure

HIV/AIDS has reached epidemic levels in Washington, D.C. and mothers living with HIV increasingly have to make difficult decisions about whether or not to disclose their HIV status to their children. Focus groups were conducted with a sample of women (N = 15) living in Washington, D.C. to investigate maternal decision-making about HIV disclosure, the factors that influenced disclosure, challenges to disclosure, and children’s reactions to disclosure. This was a first step towards the larger goal of developing a culturally sensitive disclosure decision-making intervention. Participants were asked to identify elements to include in such an intervention. We also quantitatively examined participants’ psychosocial outcomes of depression, perceived social support, quality of life, and parenting challenges. Our preliminary findings showed that most participants experienced intense emotional distress after receiving an HIV diagnosis and this distress prevented them from disclosing their HIV status to family members and children. Several specific parenting concerns (e.g., age and gender of child, relationship to child, and number of children) influenced their decisions to disclose. All participants reported that HIV related stigma and discrimination as significant disclosure-related challenges. Health providers were not always perceived as being able to support participants in making a decision about whether or not to disclose their HIV status to their children.     

Pastoral counselling: an American perspective

While pastoral counselling is a function of pastoral ministry in religious communities, it is also a specialised ministry requiring professional training that extends well beyond a pastoral/ theological education for ministry, as well as beyond the confines of religious communities. This article is an American perspective on Certified Pastoral Counsellors as mental health care providers for individuals, couples, and families, generally on a fee-for-service basis, with many qualifying for reimbursement by private and federal third party payers. It demonstrates that pastoral counselling as practised in the USA is spiritually integrated counselling and psychotherapy, requiring graduate academic and clinical work in these disciplines as well as graduate education in religious studies. It offers an American perspective on this specialised ministry of mental and relational health and discusses its identity and function, methodology, supervision requirements, and the clinical use of religious resources, including a case illustration.     

DECIDING WHOM TO TELL: EXPECTATIONS AND OUTCOMES OF RAPE SURVIVORS' FIRST DISCLOSURES

In this study, 102 female rape survivors were interviewed regarding their first post-assault disclosure. Qualitative analysis revealed that nearly 75% of first disclosures were to informal support providers and over one third of the disclosures were not initiated by the survivors themselves. Over half of the survivors received positive reactions and less than one third felt the disclosure had a detrimental impact on their recovery. Loglinear analysis suggested that survivors who actively sought help from informal support providers were more likely to receive positive than negative reactions. In contrast, survivors who actively sought help from formal support providers were more likely to receive negative than positive reactions. When disclosure to formal support providers was initiated by the formal support providers themselves, however, survivors received exclusively positive reactions. Implications for future research are discussed.     

Disclosure of HIV status is a family matter: field notes from China.

This study examines the role that family plays in disclosure of HIV-AIDS in China. In-depth semistructured interviews were conducted with 30 individuals living with HIV-AIDS infected through different routes. The vast majority of participants were between the ages of 20 and 39 years old (93.4%) and about a third (36.7%) were women. Two primary disclosure processes, involuntary and voluntary, are described. In both processes, family members other than the patient are usually the first to know HIV status. Positive impacts of disclosure include strengthening family relations and help with medical care and counseling, whereas negative impacts include fear, isolation, avoidance, and psychological burden. This study illustrates that family is an intricate part of the disclosure process in China and demonstrates the importance of including families in HIV-AIDS interventions.     

Maximal care considerations when treating patients with end-stage heart failure: ethical and procedural quandaries in management of the very sick

Deciding who should receive maximal technological treatment options and who should not represents an ethical, moral, psychological and medico-legal challenge for health care providers. Especially in patients with chronic heart failure, the ethical and medico-legal issues associated with providing maximal possible care or withholding the same are coming to the forefront. Procedures, such as cardiac transplantation, have strict criteria for adequate candidacy. These criteria for subsequent listing are based on clinical outcome data but also reflect the reality of organ shortage. Lack of compliance and non-adherence to lifestyle changes represent relative contraindications to heart transplant candidacy. Mechanical circulatory support therapy using ventricular assist devices is becoming a more prominent therapeutic option for patients with end-stage heart failure who are not candidates for transplantation, which also requires strict criteria to enable beneficial outcome for the patient. Physicians need to critically reflect that in many cases, the patient’s best interest might not always mean pursuing maximal technological options available. This article reflects on the multitude of critical issues that health care providers have to face while caring for patients with end-stage heart failure.     

The meaning of bad news in HIV disease: Counselling about dreaded issues revisited

HIV disease is a slow, progressive immunological disorder. As there is neither a cure nor a vaccine, morbidity and mortality arising from HIV infection will continue to challenge health care providers, including those who counsel these patients. Psychological preparation for ‘bad news’ and support for those whose health is deteriorating is an important task in HIV counselling. This paper describes what may be considered bad news for people living with HIV, how to prepare them for unwelcome changes in their medical condition and how to give bad news, should the need arise.     

The Age of Uncertainty: Parent Perspectives on the Transitions of Young People with Mental Health Difficulties to Adulthood

For young people aged 16–24, the transition from adolescence to young adulthood involves predictable and unpredictable changes and they may encounter challenges in their roles, relationships, and responsibilities. Young people with mental health difficulties face additional challenges as they and their families navigate this transition. As a result, families commonly experience anxiety, uncertainty, frustration, and turbulent relationships. After learning to become advocates to secure appropriate services for their children, in late adolescence and young adulthood, parents are likely to find themselves excluded from their children’s treatment planning and services. This article reports findings from a recent qualitative study of the experiences and perceptions of 42 family members supporting their children with mental health difficulties during the transition years. Family members described their goals for their children, their frustrations trying to access appropriate services for their children, and their strategies to provide the support their children needed. Recommendations are for service providers to connect transition age youth with practical assistance and supportive mentoring relationships. Family members requested service providers to consider them as resources and potential collaborators in supporting young people with mental health difficulties to live successful lives in the community.     

Primary Care Providers’ Responses to Patient-Generated Family History

Family health history is one of the best predictors of an individual’s risk for common disease, yet it is underutilized in routine care. Although the Surgeon General has recommended consumers record their family health history and share it with their health care provider, providers’ perceptions of patient-generated family histories are unknown. To learn more about providers’ experience with and perceptions about patient-generated family histories, we mailed surveys to 301 providers and had a response rate of 24% (n = 68). Seventy-three percent felt a patient-generated computer pedigree would improve their ability to assess risk as compared to their current methods. Seventy percent felt a patient-generated computer pedigree would either have no effect on or would increase the number of patients that could be seen in a day. Results suggest that providers appreciate the potential benefits of patient-generated family histories. Genetic counselors and nurses are in a prime position to promote and facilitate the use of patient-generated family health histories in routine care.     

Collaborative Communication Between Psychologists and Primary Care Providers

Psychologists frequently collaborate in the care of patients managed in primary care. Communication with a patient’s primary care team is important to ensure coordination and continuity of care. The communication is far from seamless. Although The Health Information Privacy and Portability Act (HIPPA) is designed to promote sharing of clinical information while protecting patient confidentiality, unique problems arise when mental health records are included. Mental health records are subject to different regulations to protect the patient’s confidentiality. Thus, what is communicated and how it will be accomplished are challenges. Further, psychologists and primary care providers often view documentation differently, resulting in different styles of documenting that may also impede coordinated care. Increasingly, health care systems are moving toward electronic medical records, creating greater opportunities for an integrated record. Improved communication through the record can keep other providers abreast of the mental health care being provided as well as suggestions they can use to reinforce the mental health care treatment plan.     

Physicians' nonverbal rapport building and patients' talk about the subjective component of illness

Physicians' nonverbal communication has sometimes been found to be associated with patients' affective satisfaction. Too little attention has been given, however, to the impact of these caregiver behaviors on patients' self‐disclosure. This paper examines the relationship between physicians' nonverbal rapport building and patients' disclosure of information related to the subjective component of illness. Twelve third‐year residents at a large teaching hospital were videotaped during interactions with patients (N = 34). These physicians' nonverbal communication behaviors were coded in the introduction and diagnosis segments of the interactions. Patients' verbal communication behaviors related to disclosure of information about the subjective component of their illnesses were coded across the same segments. Correlation analysis revealed significant relationships between physicians' use of some types of nonverbal behaviors and patients' subjective disclosure, as well as physicians' avoidance of negative facial behaviors and patients' disclosure about life beyond symptoms and structural barriers to wellness. Implications for understanding the role of physicians' nonverbal communication on health care outcomes are considered.     

African American Clergy Share Perspectives on Addressing Sexual Health and HIV Prevention in Premarital Counseling: A Pilot Study

This exploratory qualitative pilot study examined the extent to which seven African American clergy discussed and promoted sexual health dialogue with couples preparing for marriage. We explored the following topics: (a) clergy perspectives on disclosure; (b) clergy awareness about HIV/AIDS and (c) the extent to which clergy awareness about HIV is translated into their premarital counseling programs. Our results suggest that greater awareness and comfort level with discussions about sexuality mediate the inclusion of sexual health and promotion of HIV testing in premarital counseling.