Dignity of Risk, Intellectual/Developmental Disabilities, and Living in the Community.

Historically, people with intellectual/developmental disabilities (IDD) lived in institutions with little contact with the community. Having a label of "mental retardation" meant they were incapable of living and working outside of the institution. These individuals were protected from risk and harms and had little input into how they lived their lives. Perske (1972) challenged the idea that persons with IDD necessarily had to be protected from the harms one faces in daily life. He championed the principle of "dignity of risk," respecting their right to weigh risks and harms of their choices. Over time, federal, state, and local agencies embraced the idea that people with IDD should be integrated into communities and receive supports so they may live their lives to the fullest. This article discusses how a community agency worked with their clients with IDD to balance their personal liberties with acceptable risks as they live and work in the community. Approaches such as the use of a Risk Committee or the empowerment of direct care workers in assessing risks are described through case illustrations.

Assessing the combined effect of ageism and sexuality-related stigma on the mental health and well-being of older lesbian and gay adults.

OBJECTIVE: Relatively little research has examined ageism among older lesbian and gay adults. In this study, we investigated how ageism, as well as sexuality-related stigma, relate to mental health and well-being in these groups. METHOD: Six hundred and thirteen lesbian women and gay men aged 60+ in Australia completed a nationwide survey. We investigated how experiences of ageism, concerns about having one's sexual orientation accepted by others (as one broad indicator of sexuality-related stigma), and their interactions, predict psychological distress, positive mental health, and resilience. RESULTS: Among the lesbian women, experiences of ageism predicted greater psychological distress and lower positive mental health, while sexuality acceptance concerns predicted poorer outcomes on all three well-being measures. Among the gay men, experiences of ageism and sexuality acceptance concerns predicted poorer outcomes on all the well-being measures. In addition, the gay men who were higher on sexuality acceptance concerns had higher psychological distress and lower resilience, but only when they also had greater experiences of ageism. CONCLUSION: Findings suggest that those concerned with the well-being of lesbian and gay people should account for not only the potential impact of sexuality acceptance concerns but also ageism, and how these two factors may interact.

An Educational Intervention for Mental Health Staff to Assess Clients' Diabetic Self-Care Skills for Self-Management and Safe Transition into the Community.

The current project's objective was to increase mental health assessor's knowledge about type 2 diabetes after attending a nurse practitioner's presentation. Mental health assessors, primarily social workers, help transition individuals with severe mental illness (SMI) and comorbidities from inpatient nursing homes back into the community. The assessor's knowledge about individual comorbidities, such as diabetes, is crucial for a successful long-term community transition. Mental health assessors were given the Diabetes Knowledge Test 2 pre- and post-educational intervention. The post-test intervention revealed assessors' knowledge increased by 25% in knowledge about diabetes and 225% in ability to use a glucometer. Mental health assessors also maintained their increased knowledge 3 months post-intervention. Emboldened with this knowledge, mental health assessors are better prepared to facilitate safe transfer of individuals with diabetes and SMI back into the community. Mental health assessors may also help prevent unnecessary emergency department visits and/or hospitalizations. [Journal of Psychosocial Nursing and Mental Health Services, 60(2), 27-32.].

Factors Associated with Self-Reported PTSD Diagnosis among Older Lesbian Women and Gay Men.

Lesbian women and gay men are at greater risk of post-traumatic stress disorder (PTSD) than heterosexual people, however few studies have examined PTSD in older lesbian women and gay men. This study examined predictors of having ever been diagnosed with PTSD, as well as relationships to current quality of life, among 756 lesbian women and gay men aged 60 years and older in Australia. Participants were surveyed on their sociodemographic characteristics, experiences of sexual orientation discrimination over their lifetime, whether they had ever been diagnosed with PTSD, whether they were currently receiving treatment for PTSD, and their current quality of life. After adjusting for sociodemographic variables, participants who reported having a PTSD diagnosis (11.2%) had significantly more frequent experiences of discrimination over their lifetime and were significantly less likely to currently be in a relationship. Older lesbian women were significantly more likely than older gay men to report ever having had a PTSD diagnosis. Additionally, having ever been diagnosed with PTSD significantly predicted current poorer quality of life. These findings suggest that a history of PTSD among older lesbian women and gay men is linked to experiences of discrimination and other factors, with associated links to current quality of life.

Relationships among parenting stress, health-promoting behaviors, and health-related quality of life in Korean mothers of children with cerebral palsy.

Health-promoting behaviors have been shown to enhance the quality of life across diverse populations. In this study, we examined the indirect effects of several health-promoting behaviors on the relationship between parenting stress and health-related quality of life in mothers of children with cerebral palsy (CP). A convenience sample of Korean mothers (N = 180) of children aged 10 months to 12 years with CP was recruited from clinical and school settings. Health-promoting behaviors were measured using the health-promoting lifestyle profile II, which is comprised of six subscales: health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, and stress management. Multiple mediation analyses were conducted to examine the mediating role of these behavioral categories. Spiritual growth (ß = .56, p < .05) had an indirect effect on the relationship between parenting stress and physical health-related quality of life while spiritual growth (ß = -1.00, p < .01) and stress management (ß = -.80, p < .05) were found to mediate the association between parenting stress and mental health-related quality of life. The findings of multiple mediation analyses provide evidence of the influence of specific health-promoting behaviors on health-related quality of life, thereby informing the development of intervention programs for mothers of children with disabilities.

An Intervention to Decrease Benzodiazepine Prescribing by Providers in an Urban Clinic.

The objective of this quality improvement project was to decrease the amount of benzodiazepines (BZDs) prescribed by providers at a Midwestern university outpatient clinic. Clinic providers participated in a brief, live educational intervention combining academic detailing (i.e., the provision of current evidence about BZD) and pharmaceutical detailing (i.e., a sales technique borrowed from pharmaceutical companies). A 1% decrease in BZD prescribing was set as the measure of success. Using data from the electronic medical record, the monthly average of BZD prescriptions written within calendar year 2017 (before project launch) was compared to the number written 30 days after the intervention. Following the intervention, an 80% reduction in BZD prescribing was calculated. Combined academic and pharmaceutical detailing could be an effective way to change prescribing behavior in this provider population. Further investigation is needed to ascertain whether the change in prescribing behavior can be sustained, and that no harm is being done to patients who are currently dependent on BZD medications. [Journal of Psychosocial Nursing and Mental Health Services, 58(1), 39-45.].

Nurses' roles and challenges in providing end-of-life care in neonatal intensive care units in South Korea.

BACKGROUND: Neonatal Intensive Care Unit (NICU) nurses in Korea often experience challenges in providing care for dying infants and their families. However, there is limited understanding about what contributes to the challenges related to end-of-life care. PURPOSE: To describe NICU nurses' perceived roles and challenges faced while providing end-of-life care in South Korea. METHODS: A qualitative descriptive study was conducted with 20 NICU nurses in South Korea using semi-structured interviews. Participants were recruited from two NICUs in Seoul, where infant mortality is the highest in South Korea. Transcribed interviews were coded by two research personnel, and subsequently, a developed coding book was translated by three research personnel. The codes developed were categorized and peer-reviewed to develop themes using conventional content analysis. RESULTS: Nurses' roles during end-of-life care were grouped into four categories: providing information and support, enhancing attachment between the parents and infants, providing direct care to the infant, and completing documentation. Nurses' perceived challenges during end-of-life care included providing end-of-life care without adequate experience and knowledge, environmental constraints on end-of-life care, and conflicted situations during end-of-life care. CONCLUSION: Although the nurses provided the best care they could, their end-of-life care practice was hindered for various reasons. To enhance NICU nurses' ability to provide and make them more capable of providing high quality EOL care, hospitals need to support nurse education and improve staffing level, and create in NICUs an environment that is favorable for providing EOL care.

Agency, social and healthcare supports for adults with intellectual disability at the end of life in out-of-home, non-institutional community residences in Western nations: A literature review.

BACKGROUND: The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood. METHOD: A range of databases and search engines were used to locate conceptual, clinical and research articles from relevant peer-reviewed journals. RESULTS: The present authors present a literature review of the agency, social and healthcare supports that impact end-of-life care for adults with intellectual disabilities. More information is needed about where people with intellectual disabilities are living at the very end of life and where they die. CONCLUSIONS: The support needs for adults with intellectual disabilities will change over time, particularly at the end of life. There are some areas, such as removing barriers to providing services, staff training, partnerships between agencies and palliative care providers, and advocacy, where further research may help to improve the end-of-life care for adults with intellectual disabilities.

Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities.

Although the 4 million+people in the U.S. with an intellectual or developmental disability (I/DD) experience the same life expectancy as those in the general population, end-of-life research including these individuals is lacking and can be difficult to implement. As will be described in this paper, it is possible to overcome barriers to successfully include people with I/DD in end-of-life research. In this paper, the implementation challenges, feasibility, and implications for successful end-of-life research with individuals with I/DD using focus groups are described. Individuals with I/DD were able to discuss their experiences and views about end-of-life care. However, while people with I/DD made valuable contributions to the focus groups, there were several modifications needed in order to execute this study. In order to gain a complete picture of end-of-life care for people with I/DD, it is imperative to include them in research to the best of their ability. By anticipating issues related to recruitment, the consent process, setting, and support needs of participants, focus groups can be successfully implemented.

Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant.

OBJECTIVE: When infants are at risk of being born at a very premature gestation (22-25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers. METHODS: Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme "Quality of Interactions." These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions. RESULTS: Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for). SIGNIFICANCE OF RESULTS: Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.

Extended family support for parents faced with life-support decisions for extremely premature infants.

PURPOSE: To outline parents' descriptions of extended family involvement and support surrounding decision making for their extremely preterm infant. DESIGN: Collective case study design in a prospective, descriptive, longitudinal research. Seventy-five digitally recorded interviews were done with parents before and after the birth. SAMPLE: Fifty-four parents (40 mothers, 14 fathers). MAIN OUTCOME VARIABLE: Categories of family involvement and support in the parents' decision making. RESULTS: Most parents did not seek advice from family members for life-support decisions made prenatally. Instead, parents made the decision as a couple with their physician without seeking family input. Family members provided certain types of support: emotional support, advice and information, prayer, and instrumental help such as child care. Most parents described at least one way their family supported them. For postnatal and end-of-life decisions, parents were more likely to seek advice from extended family in addition to the other forms of support.

Parent perceptions of early prognostic encounters following children's severe traumatic brain injury: 'locked up in this cage of absolute horror'.

OBJECTIVE: Little guidance exists for discussing prognosis in early acute care with parents following children's severe traumatic brain injury (TBI). Providers' beliefs about truth-telling can shape what is said, how it is said and how providers respond to parents. METHODS: This study was part of a large qualitative study conducted in the US (42 parents/37 families) following children's moderate-to-severe TBI (2005-2007). Ethnography of speaking was used to analyse interviews describing early acute care following children's severe TBI (29 parents/25 families). RESULTS: Parents perceived that: (a) parents were disadvantaged by provider delivery; (b) negative outcome values dominated some provider's talk; (c) truth-telling involves providers acknowledging all possibilities; (d) framing the child's prognosis with negative medical certainty when there is some uncertainty could damage parent-provider relationships; (e) parents needed to remain optimistic; and (f) children's outcomes could differ from providers' early acute care prognostications. CONCLUSION: Parents blatantly and tacitly revealed their beliefs that providers play an important role in shaping parent reception of and synthesis of prognostic information, which constructs the family's ability to cope and participate in shared decision-making. Negative medical certainty created a fearful or threatening environment that kept parents from being fully informed.

Predictors of Loneliness Among Older Lesbian and Gay People.

This study sought to understand the social and individual factors that predict loneliness among older lesbian and gay people in Australia. A sample of 508 gay men and 241 lesbian women, aged 60 and over, completed a survey including measures of loneliness, internalized homonegativity, sexual orientation discrimination, and connectedness to lesbian and gay communities. A multivariable linear regression predicting loneliness was conducted. Not being in an intimate relationship and having less connection to lesbian and gay communities were significant predictors of loneliness for both older lesbian women and gay men. For the men, younger age, internalized homonegativity and more frequent lifetime experiences of sexual orientation discrimination also appeared to predict greater likelihood of loneliness. More frequent recent experiences of sexual orientation discrimination predicted loneliness for the women. The findings confirmed loneliness as an issue of concern among older lesbian and gay people and identified factors amenable to intervention to address loneliness.

Divergent views of hope influencing communications between parents and hospital providers.

This study evaluated parents' and health care providers' (HCPs) descriptions of hope following counseling of parents at risk of delivering an extremely premature infant. Data came from a longitudinal multiple case study investigation that examined the decision making and support needs of 40 families and their providers. Semistructured interviews were conducted before and after delivery. Divergent viewpoints of hope were found between parents and many HCPs and were subsequently coded using content analysis. Parents relied on hope as an emotional motivator, whereas most HCPs described parents' notions of hope as out of touch with reality. Parents perceived that such divergent beliefs about the role of hope negatively shaped communicative interactions and reduced trust with some of their providers. A deeper understanding of how varying views of hope might shape communications will uncover future research questions and lead to theory-based interventions aimed at improving the process of discussing difficult news with parents.

Parent decision making for life support for extremely premature infants: from the prenatal through end-of-life period.

Most deaths of extremely premature infants occur in the perinatal period. Yet, little is known about how parents make life support decisions in such a short period of time. In the paper, how parents make life support decisions for extremely premature infants from the prenatal period through death from the perspectives of parents, nurses, and physicians is described. Five cases, comprised of five mothers, four neonatologists, three nurses, and one neonatal nurse practitioner, are drawn from a larger collective case study. Prenatal, postnatal and end-of-life interviews were conducted, and medical record data were obtained. In an analysis by two research team members, mothers were found to exhibit these characteristics: desire for and actual involvement in life support decisions, weighing pain, suffering and hope in decision making, and wanting everything done for their infants. All mothers received decision making help and support from partners and family, but relationships with providers were also important. Finally, external resources impacted parental decision making in several of the cases. By understanding what factors contribute to parents' decision making, providers may be better equipped to prepare and assist parents when making life support decisions for their extremely premature infants.

Improving Referrals to Preschool Special Education in Pediatric Primary Care.

INTRODUCTION: The American Academy of Pediatrics created evidence-based guidelines that encourage early identification and referral for children with developmental delays. Although pediatric primary care providers are poised to link 3-to-5-year-old children to school-based services, there are gaps in making referrals. METHOD: Educational dissemination of streamlined referral packets was introduced. Knowledge and perceived confidence were measured following an educational presentation. Retrospective chart reviews compared referral rates to preschool special education services when developmental delays were identified. RESULTS: Mean pretest to posttest knowledge and perceived confidence to refer children to preschool special education increased following education. Referral rates for 3-5 years-old by pediatric primary care providers doubled during the initial 8-week implementation period and remained constant 9 months later. DISCUSSION: Educational dissemination of a streamlined referral process in pediatric primary care is a sustainable approach that ensures preschool-aged children with developmental delays receive timely referrals for further school-based evaluations and interventions.

Supporting parents' decision making surrounding the anticipated birth of an extremely premature infant.

Parents who are at risk for giving birth to an extremely premature infant, defined as 22 to 25 weeks' gestation, can find themselves faced with urgent treatment decisions for their unborn infant that have life-altering consequences. Despite the recommendation for involving parents in decision making for these infants, there is limited evidence regarding guidelines for involving parents. In this article, we describe a case from a larger collective case study that examines the decision making and the decision support needs of parents regarding life support decisions made over time (prenatally and postnatally) for extremely premature infants from the perceptions of parents, physicians, and nurses. For this case study, we describe decisions that were made during the antenatal hospitalization of the mother whose infant was stillborn, the support the parents received, and advice for healthcare professionals for improving care to families. For this case, the mother and father, a physician, and 2 nurses were interviewed before the birth of the infant. The findings in this case study demonstrate the importance of the nurse being present when information is given to parents, of informing with compassion, and helping parents to understand treatment options and decisions.