Adolescent Perceptions of Adult-Mediated Healthcare Communication.

Adolescence is a time of rapid growth and development and may be accompanied by increased risk-taking behaviors and independence. Youth are particularly at risk for high levels of stress, decreased physical activity, unsafe sexual activity, abuse, depression, and suicide. Considering the unique health risks adolescents face, healthcare service access and utilization can play a pivotal role in promoting positive long term health outcomes throughout adulthood. At the same time, adolescents must often rely on parents/caregivers to mediate their healthcare access. Understanding how adolescents perceive adult interactions within healthcare is important for developing interventions that increase youth access to healthcare. We found that adolescents perceived adult-mediated healthcare experiences as either supportive (Subthemes: Recognition Builds Trust and Validation) or unsupportive (Subthemes: Adult-Focused Communication and Lack of Privacy). Based on our findings, we argue that prevention-focused interventions should include communication-based strategies. We discuss social work and healthcare practice and policy implications of these findings.

How Scientists Perceive CRISPR's Translational Promise and the Implications for Individuals with Genetic Conditions.

CRISPR (clustered regularly interspaced short palindromic repeats) somatic genome editing, an important promissory technology, presents a case study of the movement of basic scientists into translational research. In this paper, we explore how scientists experience the pulls of CRISPR's power and the pushes of economic and societal pressures in adopting new translational roles. Given basic scientists' emerging contact with and influence upon individuals with genetic conditions, we also examine how scientists understand the perspectives of affected populations, both as potential subjects of early experiments and as the patients who could receive future treatments. Finally, we consider the ethical implications of our findings and call for innovative approaches to translational research that help scientists engage with people with genetic conditions in early translational research.

Exploring the nature and correlates of caregiving among parents of adults with intellectual and developmental disabilities.

BACKGROUND: As adults with intellectual and developmental disabilities (IDD) have longer lives, parents may remain caregivers into old age. In addition, it is unknown who will fulfil caregiving roles after parents are no longer able to be caregivers. In the current study, we explored the nature (e.g. number of hours of caregiving) and correlates of parental caregiving for their adult offspring with intellectual and developmental disabilities and their future caregiving plans. METHOD: In the United States, data were collected from 334 parents of adults with intellectual and developmental disabilities via a national survey. RESULTS: Altogether, 55% of the sample spent more than 15 hr conducting caregiving per week. Individual characteristics (e.g. maladaptive behaviour and functional abilities) and parent characteristics (e.g. physical proximity of the adult with intellectual and developmental disabilities and caregiving ability) positively correlated with caregiving hours. Notably, 38.58% of participants were unsure who would fulfil caregiving roles. CONCLUSION: Implications for research about caregiving and practice are discussed.

Compound sibling caregivers of individuals with intellectual and developmental disabilities.

BACKGROUND: Given the increasing lifespans of individuals with intellectual and developmental disabilities (IDD), siblings may fulfil multiple caregiving roles simultaneously for their ageing parents, their offspring, and their brother or sister with IDD. Yet, little is known about compound sibling caregivers. The purpose of this study was to compare the perspectives of compound, single and non-caregiving siblings of adults with IDD. METHOD: This study investigated 332 adult siblings of individuals with IDD in the United States via a national web-based survey. Participants included: 152 non-caregivers, 94 single caregivers (i.e., caregivers only for their brothers and sisters with IDD), and 86 compound caregivers (i.e., caregivers for their brothers and sisters with IDD and at least one other vulnerable individual). RESULTS: Single and compound sibling caregivers (versus non-caregivers) had more positive relationships and conducted greater advocacy and future planning activities. CONCLUSIONS: Given the potential for compound sibling caregiving, further investigation is warranted.

Disability activism and non-invasive prenatal testing: A response to Breimer.

In his recent Comment in IJME, Dr Breimer casts disability advocates as "special interest groups" and pits them against the abstracted concept of "women's autonomy." Against this, we assert that, far from only being a conflict of interest category, disability activism related to prenatal screening and testing is a robust part of bioethical debate and scholarship. Here, we disagree with Dr Breimer's characterisation of Non-invasive Prenatal Testing (NIPT) related disability activism as a threat to women's autonomy and respond to the underlying assumptions of his claims. We argue that disability need not be equated only with harm. Instead, we point out the dominant and intractable belief that disability is something to be avoided, which may lead to belief-based moral wrongs. This is the position from which disability activists make claims about the need to expand understandings of disability. Drawing on existing evidence, we find that prenatal testing does not automatically facilitate autonomy, and that NIPT may be even more of a challenge to autonomy than previous testing iterations. We suggest that NIPT should continue to be a phenomenon under close clinical scrutiny, and that ongoing debates and multiple claims-making can only add to our understanding of this phenomenon.

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

Genome editing has opened up the possibility of heritable alteration of the human germline. The potential of this powerful tool has spurred a call for establishing robust regulatory frameworks to outline permissible uses of genome editing and to map a rational and ethical course. In response, major national scientific bodies and international organizations have convened and released comprehensive reports outlining recommendations for ethical regulatory frameworks. Significantly, these include an emphasis on public participation and the development of principles to guide future applications of genome editing. While essential, public input and principles are not sufficient to ensure ethical uses of this technology. We propose an approach that relies not only on agreed-upon principles and a democratic process but requires a Human Rights Impact Assessment to evaluate the potential burdens that such biomedical interventions may place on human rights.

Correlates of current caregiving among siblings of adults with intellectual and developmental disabilities.

BACKGROUND: As individuals with intellectual and developmental disabilities (IDD) grow older, siblings are likely to become caregivers for their brothers and sisters with IDD. Thus, it is important to identify the correlates of sibling caregiving to facilitate transitions to caregiving roles. METHOD: This study involved the secondary analysis of a national data set of 429 adult siblings of individuals with IDD. RESULTS: Current sibling caregiving was positively correlated with sibling relationship quality, sibling advocacy and future planning, maladaptive behaviours of individuals with IDD, and family size. Current sibling caregiving was negatively correlated with parent caregiving abilities and functional abilities of individuals with IDD. Further, among siblings who provided care, the level and nature of sibling caregiving were negatively correlated with parent caregiving abilities. CONCLUSIONS: The results identify the correlates of current caregiving among siblings of individuals with IDD. More research is needed to understand current sibling caregiving.

Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy.

BACKGROUND: Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families. METHOD: Data were collected via a national survey in the United States with 189 parents of adults with IDD. RESULTS: Across the quantitative and qualitative analyses, parents of adults with DS (versus CP and ASD) reported significantly greater recreational, natural supports, more formal services and less future planning barriers. CONCLUSION: The results indicate that the DS advantage may persist in adulthood regarding support needs. More research is needed to understand different types of support needs.

Identifying the Correlates and Barriers of Future Planning Among Parents of Individuals With Intellectual and Developmental Disabilities.

Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals with IDD responded to a national, web-based survey. Participants who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning. Reported barriers to future planning included: (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g) a lack of family members to be caregivers. Implications for policy, practice, and future research are discussed.

The Perceptions of Professionals Toward Siblings of Individuals With Intellectual and Developmental Disabilities.

Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.

Sexual health in the community: Services for people with intellectual and developmental disabilities.

BACKGROUND: Sexuality is a central dimension of overall health and well-being. People with intellectual and developmental disabilities (IDD) continue to experience disparities in healthcare, particularly regarding access to sexual health related services. Medicaid Home and Community-Based Services (HCBS) waivers are ideally situated to provide sexual and reproductive healthcare in accessible settings. OBJECTIVE: This preliminary study analyzed national Medicaid HCBS waivers to determine how they provide sexuality services for people with IDD. METHODS: 111 FY 2015 HCBS 1915(c) waivers for people with IDD from 46 states and the District of Columbia were analyzed to determine which waivers were providing services related to sexuality. Expenditure and utilization data were analyzed to determine service allotment. RESULTS: Currently, less than 12% of waivers include any kind of sexuality services, and those services provided are predominantly reactive, rather than proactive. Reactive services focused on interrupting sexually inappropriate behaviors through assessments and plans, intervention and therapy, and supervision. Meanwhile, proactive services promoted the healthy sexuality of people with IDD by providing sexuality education related to sexuality awareness, reproduction, and victimization avoidance. CONCLUSIONS: The limited availability of Medicaid HCBS sexuality service provision not only hints at a lack of understanding of sexuality for people with IDD, but also presents an opportunity to perform increased evaluations on current service offerings in order to justify future expanded offerings in other states.