Medicaid long-term services and supports and caregiving needs of caregivers of individuals with intellectual and developmental disabilities.

BACKGROUND: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. METHOD: Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey. RESULTS: Caregivers reported a moderate degree of burden and susceptibility of stress-induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (p = .013) and finding paid help (p < .001) than caregivers of individuals without services.

Case Report: Managing Growth Failure While Maintaining Exclusive Breastfeeding.

This case study presents a mother who was able to maintain exclusive breastfeeding after having an infant who experienced growth failure between the two- and four-month pediatric primary care visits. This mother was exclusively breastfeeding her child and the infant was noted to "fall off the growth curve" at the four-month infant pediatric visit. At this point the mother was advised to formula feed her infant. The mother did not want to give formula and sought out assistance from the first author who connected the mother with an advance practice nurse at the pediatric site. By working with a nurse practitioner to develop an individualized feeding plan, the mother's breastfeeding relationship was able to be maintained and the infant gained weight. Despite receiving initial recommendations to formula feed her child, we were able to work beyond those recommendations by providing evidence based breastfeeding interventions and support. A breastfeeding assessment is an important factor in each wellness visit.

Meeting the need: Creation of an online infection prevention course by the Golisano Institute for Developmental Disability Nursing for direct support professionals during COVID-19.

The Center for Disease Control (CDC) recommended that direct support professionals (DSPs) take additional steps to protect people with disabilities during COVID-19 and receive training on the use of personal protective equipment and infection prevention. The Golisano Institute for Developmental Disability Nursing identified this as an unmet need and created an online asynchronous course for DSPs on infection prevention and use of personal protective equipment to reduce transmission of COVID-19 among individuals with disabilities and DSPs. Constructivism, experiential learning theory, and active learning theory guided content development. The course used games to break-up dense information into more manageable chunks as a means to increase learner engagement and motivation. The course was delivered on a dynamic Learning Management System to allow for a variety of content authoring tools to be utilized. After evaluation, the course was disseminated to DSPs. Future directions include a broader infection protection course for DSPs, without a direct focus on COVID-19.

Physical inactivity among parents of children with and without Down syndrome: the National Health Interview Survey.

BACKGROUND: Emerging evidence suggests that parents of children with intellectual disabilities have poorer physical health than parents of typically developing children. However, it is unclear why. The purpose of this study was to examine differences in physical inactivity among a population-based sample of parents of children with and without Down syndrome. METHODS: Data for this analysis come from 11 waves (2005-2016) of the National Health Interview Survey, a U.S. nationally representative survey. Minutes per week of leisure-time physical activity were ascertained by self-report with physical inactivity defined as reporting no leisure-time physical activity. Parents were classified as (1) parents of typically developing children, (2) parents of children with Down syndrome, (3) parents of children with a developmental disability that had a high functional impact (autism, cerebral palsy, vision impairment or hearing impairment), (4) parents of children with an intellectual or developmental disability, but who did not have Down syndrome or a high-impact developmental disabilities, and (5) parents of children with other special health care needs. RESULTS: Parents of children with Down syndrome were more likely to be physically inactive compared with parents of typical children (odds ratio [OR]: 1.51 [95% confidence interval, CI: 1.08, 2.12]) and had the lowest likelihood among all subgroups of parents to children with developmental disabilities or special health care needs. Parents of children with Down syndrome also had a significantly greater likelihood of being physically inactive compared with parents of children with other special health care needs (OR: 1.56 [95% CI: 1.11, 2.19]), with developmental disabilities without high functional impact (OR: 1.58 [95% CI: 1.12, 2.24]) and with developmental disabilities with high functional impact (OR: 1.46 [95% CI: 1.03, 2.08]). CONCLUSION: Parents of children with Down syndrome are more likely to be physically inactive compared with parents of typically developing children and parents of children with other developmental disabilities or special health care needs. These findings suggest that parents of children with Down syndrome are a population in urgent need for interventions/programmes that promote physical activity, particularly as child well-being is linked to caregiver health.

Factor structure of the professional quality of life scale among direct support professionals: factorial validity and scale reliability.

BACKGROUND: Direct support professionals (DSPs) support people with intellectual and developmental disabilities in activities of daily living. DSPs may experience both contentment and struggles with their work. As agencies grapple with their recruitment and retention, understanding DSPs' holistic work experience is important. The Professional Quality of Life (ProQOL) scale assesses multiple domains of work experiences (i.e. compassion satisfaction, burnout and secondary traumatic stress). Despite extensive use across helping professions, the ProQOL is largely absent from DSP research. METHOD: This study examined the factor structure of the ProQOL with DSPs. Using secondary data from 495 DSPs, confirmatory factor analysis was conducted to determine if the original three-factor structure holds for this population. RESULTS: We confirmed the factorial validity of the ProQOL with the three-factor solution. In the validation process, some modifications were suggested to the model, which also improved the scale reliability. CONCLUSIONS: The current study provides initial evidence of the factorial validity of the ProQOL when used with DSPs, as well as recommendations for subsequent improvements and future research.

Examining the impact of COVID-19 in ethnically diverse families with young children with intellectual and developmental disabilities.

BACKGROUND: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals. METHOD: The present study sought to examine the impact of COVID-19 in 77 ethnically, linguistically and socioeconomically diverse families with young children with intellectual and developmental disabilities (IDDs) in California and Oregon, who were participating in larger intervention studies. Parents responded to five interview questions about the impact of the pandemic, services for their child, silver linings or positive aspects, coping and their concerns about the long-term impact of the pandemic. RESULTS: Parents reported that their biggest challenge was being at home caring for their children with the loss of many essential services. Parents reported some positive aspects of the pandemic, especially being together as a family. Although there were positive aspects of the situation, many parents expressed concern about long-term impacts of the pandemic on their children's development, given the loss of services, education and social engagement opportunities. CONCLUSION: Results suggest that parents of young children with IDD report significant challenges at home during the pandemic. Professional support, especially during the reopening phases, will be critical to support family well-being and child developmental outcomes.

A nurses' ethical commitment to people with intellectual and developmental disabilities.

Aim: This article explores the issues of knowledge deficits of healthcare professionals in meeting the needs of people with IDD throughout the life span, and to identify factors that contribute to these deficits. Although statistics vary due to census results and the presence of a "hidden population," approximately 1%-3% of the global population identify as living with an intellectual or developmental disability. People with intellectual or developmental disability experience health inequities and confront multiple barriers in society, often related to the stigma of intellectual or developmental disability. Disparities in care and service are attributed to a lack of knowledge and understanding among healthcare providers about people with intellectual or developmental disability, despite their increased risk for chronic health problems. The near absence of educational programs in nursing both nationally and internationally contributes to this significant knowledge deficit. In addition, ethical considerations between paternalistic beneficence and idealized autonomy have resulted in a lack of clear direction in working with a population that is often ignored or exploited. Nurses who view people with intellectual or developmental disability as vulnerable without assessing or acknowledging their capabilities may err toward paternalism in an effort to "first do no harm." Likewise, nurses who fail to recognize the challenges and limitations faced by people with intellectual or developmental disability may not provide sufficient protections for a vulnerable person. People with intellectual or developmental disability are not binary, but rather complex individuals with a myriad of presentations. This article seeks to encourage a well-informed model of nursing care. Through an ethical lens, this article explores the nurse's ethical commitments in cases of victimization, access to care, decision making, and the provision of optimal end-of-life care for people with intellectual or developmental disability.

Effects of mindfulness, coping styles and resilience on job retention and burnout in caregivers supporting aggressive adults with developmental disabilities.

BACKGROUND: Considering the growing body of studies investigating the effects of mindfulness-based interventions on caregivers supporting people with developmental disabilities, the current study aimed to explore the role that the cognitive processes of mindfulness, coping style and resilience played in predicting caregiver retention and burnout among a sample of direct support professionals working with aggressive adults with developmental disabilities. METHODS: Ninety-seven direct support professionals were surveyed to determine level of mindfulness, coping styles, resilience and burnout and were interviewed 3 months later to determine if they were still working with the aggressive adult. RESULTS: Mindfulness skills of describing non-judgmentally and observing one's environment, as well as problem-focused coping, emerged as protective factors against burnout, while avoidance-focused and maladaptive coping emerged as risk factors. Mindful openness acted as the only predictor of job retention. CONCLUSIONS: These results support that paid caregivers should receive trainings in mindfulness and positive coping mechanisms as part of their job trainings, to promote positive outcomes for both themselves and the people they support.

Aging Individuals With Down Syndrome and Dementia as Teachers: Learnings from Staffin a Developmental Disability Program in Long-Term Care.

Older adults with Down syndrome (DS) and dementia are an emerging sub-population. With much longer life spans than decades ago, issues have arisen as to where these aging adults will live and how nurses and other staff in facilities can provide effective care to these individuals. The current article presents a research study that examined the learnings of nurses and staff members working within a western Canadian program for older adults with DS and dementia. These learnings include: the importance of learning from each other; importance of collaboration; how individuals with developmental disabilities communicate; older adults with DS and dementia differ from older adults with dementia; and residents' impact on staff. [Journal of Gerontological Nursing, 45(5), 17-22.].

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.

Variables which predict maternal self-efficacy: A hierarchical linear regression analysis.

BACKGROUND: Children with developmental disabilities tend to develop challenging behaviours. Parenting programmes that focus on behaviour management may help parents address these difficult behaviours by increasing parenting self-efficacy. However, the literature on parenting self-efficacy is still limited due to measurement variability in conceptualization and operationalization of the construct, and heavy reliance on cross-sectional data. METHOD: This study utilized hierarchical linear regression to examine the predictors of parenting self-efficacy in 284 mothers who attended a parenting programme in a hospital's Department of Child Development in Singapore. RESULTS: Our model was able to explain 37% of variance in parenting self-efficacy. After controlling for general stress and specific parenting hassles, the programme was still found to be effective in improving mothers' parenting self-efficacy. CONCLUSIONS: Results are discussed in terms of their implications for developing a model for parenting self-efficacy, and possible improvements to be made on the parenting programme.

Siblings of adults with intellectual and developmental disabilities: Their knowledge and perspectives on guardianship and its alternatives.

BACKGROUND: Siblings of adults with intellectual and developmental disabilities (IDD) often support their brothers and sisters through caregiving and guardianship. METHODS: In this qualitative study, the knowledge and views of 10 adult siblings were explored. RESULTS & CONCLUSIONS: The tripartite impact of limited knowledge of guardianship and alternatives, the viewpoint of full guardianship as necessary and the desired/anticipated roles of siblings combined to create the Sibling Reciprocal Effect (SRE). The present authors define SRE as the phenomenon of siblings to recognize the applicability of complementary forms of guardianship for other adults with IDD, but fail to see the advantage of available decision-making alternatives with their own brothers/sisters. Instead, siblings defer to full guardianship as the preferred mechanism for decision making. Implications for practitioners include informing families of the full range of options for supporting persons with IDD in decision making. Future research suggestions include examining the elements of the SRE and siblings' knowledge regarding guardianship and the alternatives.

Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives.

BACKGROUND: Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long-term care planning. METHODS: The study team conducted interviews with parents and siblings of adults with IDD and performed qualitative coding using a modified grounded theory to explore domains of future planning and identify barriers and facilitators. RESULTS: Themes from the interviews revealed seven major domains of future planning that should be considered by caregivers of adults with IDD. These domains are housing, legal planning, identification of primary caregiver(s), financial planning, day-to-day care, medical management and transportation. Approaches to planning within each domain varied greatly. CONCLUSIONS: The study team dentified the domain of "identification of primary caregiver(s)" as potentially the most important step for caregivers when planning for the future, but also observed that the domains identified are significantly interrelated and should be considered together.

Effect of parenting stress in Korean mothers of children with disabilities on life satisfaction: Moderating effect of intrinsic religious orientation.

BACKGROUND: With growing interest in parenting stress among mothers of children with disabilities, the current study examined the multidimensional aspects of parenting stress and their impact on life satisfaction among Korean mothers of children with disabilities. Based on the suggestions of prior findings concerning the potential role of intrapersonal resources on moderating parenting stress, the study focused on intrinsic religious orientation as one of the intrapersonal resources. METHOD: Participants completed measures of three types of parenting stress (parental distress, parent-child dysfunctional interaction and difficult child), life satisfaction and religious orientation. RESULTS: Two subscales of parenting stress (i.e., parental distress and difficult child) had negative associations with life satisfaction. Intrinsic religious orientation weakened the relationship between parental distress and life satisfaction, especially among individuals who held moderate and high levels of intrinsic religious orientation. CONCLUSION: These findings indicate the existence of differential associations between parenting stress type and life satisfaction in Korean mothers of children with disabilities. The current findings also identified the interrelationships between the religious resources and maternal parenting stress of children with disabilities. Intrapersonal religious resources have the potential to counterbalance the negative impact of maternal distress.

"I'm just trying to cope for both of us": Challenges and supports of family caregivers in participant-directed programs.

Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

Chromosome 16p13.11 Microdeletion Syndrome in a Newborn: A Case Study.

Chromosome 16p13.11 microdeletion syndrome is a rare copy number variant that carries increased risks for complications in the neonatal period and throughout the life span. Clinical manifestations and associated defects known to present in the neonatal period include motor delay, facial dysmorphisms, microcephaly, gastroesophageal reflux disease (GERD), and congenital heart defects. Management in the neonatal period focuses on associated comorbidities, including motor delay with or without GERD, which commonly manifests as feeding difficulties. Life span implications of chromosome 16p13.11 microdeletion syndrome include developmental, speech, and language delay; psychiatric and behavioral problems; seizure disorders; and, less commonly, obesity. Nursing assessment is critical to the early identification of nonspecific abnormalities associated with de novo genetic disorders. Early identification and diagnosis of chromosome 16p13.11 microdeletion syndrome are critical to optimizing outcomes throughout infancy and across the life span. We present a case report of an infant diagnosed with chromosome 16p13.11 microdeletion. A discussion of genetic influences, associated clinical manifestations, diagnostics, management, and health promotion strategies are presented to establish core knowledge of chromosome 16p13.11 microdeletion.

The transition to adulthood of young adults with IDD: Parents' joint projects.

INTRODUCTION: Parents have found the transition to adulthood for their sons or daughters with intellectual and/or developmental disabilities (IDD) particularly challenging. The literature has not examined how parents work together and with others in face of this transition nor has it highlighted parental goals in this process. This study used a perspective based on joint, goal-direct action to describe the projects that Canadian parents engaged in together and with others relative to this transition. METHODS: Using the qualitative action-project method, joint projects between parents and with others were identified from their conversations and followed for 6 months. FINDINGS: Three groups of projects were described: equipping the young adult for adult life, connecting for personal support and managing day-to-day while planning for the future. CONCLUSIONS: Parents act together and with others relative to the transition to adulthood of their young adult children with IDD. These projects are complex and differ in goals, steps, resources and emotional regulation and motivation.

Mothering children with developmental disabilities: A critical perspective on health promotion.

We present findings of a qualitative study exploring what constitutes relevant health promotion initiatives for immigrant mothers of children with developmental disabilities. We apply a social ecological approach, with a focus on gender-specific and transformative health promotion, to examine factors impacting mothers' health and wellbeing. Twenty-eight semi-structured and open-ended interviews were conducted with immigrant mothers in the greater Toronto area, Canada. Mothers identified facilitators, challenges, and strategies for their health promotion, providing relevant insights for meaningful intervention. Our findings show that immigrant mothers' health is influenced by intersecting social determinants of health, including migration status, gender, and disability.

Disparities in Unmet Service Needs Among Adults with Intellectual and Other Developmental Disabilities.

BACKGROUND: Due to long waiting lists for services, many adults with intellectual and developmental disabilities in the United States have unmet service needs. Little research, however, has identified the characteristics of caregivers and individuals with intellectual and developmental disabilities that relate to the unmet service needs among individuals who are waiting for services. METHOD: The present authors conducted a statewide mail survey of 234 caregivers of individuals with intellectual and developmental disabilities who were waiting for services. The present authors identified which parent and individual with intellectual and developmental disability characteristics were significantly associated with the number of unmet service needs. RESULTS: Individuals with intellectual and developmental disabilities who were in poor health, from minority backgrounds and non-verbal were significantly more likely to have a greater number of unmet service needs. Additionally, individuals with younger caregivers and individuals with caregivers from low-income backgrounds were significantly more likely to report a greater number of unmet service needs. DISCUSSION: Implications for research and policy are discussed.

Developmental Origins of Health and Disease: A Challenge for Nurses.

Prevention of disease is a cornerstone of nursing care. Through our endeavors in research, teaching, and clinical care, nurses consistently seek to change the trajectory of disease development. The theoretical framework known as the Developmental Origins of Health and Disease (DOHaD) offers a new lens that shifts the current disease prevention paradigm upstream, encouraging intensified care of pregnant girls/women, neonates, and infants. This new focus parallels other emerging ecobiodevelopmental, life-course theories, which identify the long-term impact of early environments and stressors on the later risk of chronic adult diseases. Nurses have the potential to influence the health of multiple generations by incorporating DOHaD perspectives and interventions into their research and patient care.