"What Services?": Stakeholders' Perceived Unmet Support Needs for Parents With Neurological Disorders.

Background. Knowledge about the needs of parents with neurological disorders who take care of young children is limited. Purpose. The overall aim of this qualitative study was to explore the perceived unmet parent needs, current supports, and potential solutions to optimize supports of parents with neurological disorders in early childhood in a Canadian setting. Method. Focus groups and individual interviews with parents (n = 8), spouses (n = 5), rehabilitation clinicians (n = 8), community partners (n = 7), and researchers (n = 7) were conducted with a total of 35 participants recruited using convenience sampling. Inductive iterative thematic analysis was performed. Findings. The participants identified the need for society to officially recognize parenting with disabilities, adjust public policies, increase the scope of public programs, consider child development and family well-being, and have barrier-free communities. Conclusion. Providing customized solutions that will adequately fill perceived service gaps is of utmost importance to address these families' needs.

Improving services for parents with intellectual disability and their families: Views of Canadian social service workers.

How adults with intellectual disability fare in the parenting role depend, to varying degrees, on the adequacy of supports and services provided. The available research suggests that service providers are often ill-equipped to accommodate their support needs. The purpose of this qualitative descriptive study was to explore the perspectives of Canadian social service workers on what is required to improve services and build systems capacity to more effectively support parents with intellectual disability, their children and families. A total of 39 workers, identified by parents with intellectual disability as their key workers, were interviewed. To build systems capacity to support these parents and families, and to address institutionalised discrimination, key workers highlighted the need for entry-to-practice and continuing professional education to develop worker capabilities for reflective practice, relationship-building and research utilisation; accommodative caseload management, giving workers the time, flexibility and the professional supervision they need to deal with complexity and fashion individualised service responses; and, a common framework, with defined service pathways, to facilitate interagency case planning and, in turn, continuity in service provision. The question is not whether adults with intellectual disability can be effectively supported in the parenting role; the question is whether the political will exists to do what is necessary to ensure they are.

Reasonable Efforts? Child Maltreatment Investigations and Service Referrals of Parents With Ascribed Cognitive Impairments in Canada.

Parents with ascribed cognitive impairment (CI) are more likely than parents without CI to have their children removed by child protective services (CPS). Inequitable access to parenting and family supports and services is thought to be a contributing factor. Utilizing data on a 3-month sample of 15,980 child maltreatment investigations across Canada, including 1,244 cases featuring parents with CI, this study investigated service referrals and non-referrals. The results of this secondary data analysis suggest that, relative to need, parents with CI are less likely to be referred for matched services, including home based\reunification services post child removal. It is unclear whether disparate rates of referral are driven by a lack of inclusive services, and/or the conflation of parental CI with perceived parenting deficits. When perceived parenting deficits are attributed to parental CI, CPS may wrongly assume that these are irremediable. The findings highlight the need for building inter-sectoral service pathways in order to render appropriate assistance to parents with CI in the performance of their childrearing responsibilities.

Child Maltreatment Investigations in Canada: Main and Moderating Effects of Primary Caregiver Cognitive Impairment.

Children of parents with cognitive impairment are overrepresented in the child protection system (CPS). The aim of this study was to examine the relationship between primary caregiver cognitive impairment (CCI) and CPS investigation outcomes using the Canadian Incidence Study of Reported Child Abuse and Neglect (CIS-2008). The CIS-2008 includes process and outcomes data on a national sample of CPS investigations involving a total of 15,980 children under the age of 16 years. This secondary data analysis found that primary CCI was noted in 6.3% of all investigations. When primary CCI was noted, investigations were 3-4 times more likely to result in child removal and court action. The results further suggest that some case characteristics, including case history variables, are weighted differently in decision making depending on whether or not primary CCI is indicated. A systematic, national strategy is needed to build capacity in government and community sectors for the provision of research-informed child and youth protection and family support services for these parents and their children.

Recent Trends and Future Directions in Research Regarding Parents with Intellectual and Developmental Disabilities.

PURPOSE OF REVIEW: This report updates research on parents with IDD and their children published since 2014. RECENT FINDINGS: Since 2014, a plethora of studies using large administrative databases in different countries support a contextual approach to understand why parents with IDD and their children may have worse outcomes than other families. In most studies, increased risk of ill health in women with IDD and health and developmental problems in their children were fully or partially accounted for by socioeconomic and psychosocial hardships. New research has found that pregnant women with IDD tend to have risk factors for pregnancy, birth, and postpartum complications that may contribute to adverse child outcomes. Intervention research is gradually becoming more contextualized. SUMMARY: More studies are needed on multicultural aspects of parenting, programs that could help parents with IDD overcome social and health disadvantages, comprehensive and coordinated service models that start during pregnancy, innovative parent support arrangements, parenting education for teens and young adults with IDD, use of technology, and dissemination and implementation of evidence-based programs.

Brain-computer interfaces and personhood: interdisciplinary deliberations on neural technology.

OBJECTIVE: Scientists, engineers, and healthcare professionals are currently developing a variety of new devices under the category of brain-computer interfaces (BCIs). Current and future applications are both medical/assistive (e.g. for communication) and non-medical (e.g. for gaming). This array of possibilities has been met with both enthusiasm and ethical concern in various media, with no clear resolution of these conflicting sentiments. APPROACH: To better understand how BCIs may either harm or help the user, and to investigate whether ethical guidance is required, a meeting entitled 'BCIs and Personhood: A Deliberative Workshop' was held in May 2018. MAIN RESULTS: We argue that the hopes and fears associated with BCIs can be productively understood in terms of personhood, specifically the impact of BCIs on what it means to be a person and to be recognized as such by others. SIGNIFICANCE: Our findings suggest that the development of neural technologies raises important questions about the concept of personhood and its role in society. Accordingly, we propose recommendations for BCI development and governance.

Mothering with an Intellectual Disability: A Phenomenological Exploration of Making Infant-Feeding Decisions.

BACKGROUND: Mothers with intellectual disability are less likely than mothers without intellectual disability to breastfeed their infants, but there is little literature that addresses infant-feeding decisions among this population. This study explores experiences of mothers with intellectual disability in making and carrying out infant-feeding decisions. METHODS: Using a phenomenological approach, in-depth interviews were conducted with four mothers with intellectual disability. RESULTS: Analysis focused on making and carrying out infant-feeding decisions. Three sub-themes of making infant-feeding decisions emerged: being familiar with benefits of breastfeeding, owning the initial decision and preparing for infant-feeding. Two sub-themes of carrying out infant-feeding decisions transpired: facing challenges and receiving support. CONCLUSIONS: The prenatal period was a crucial time for the mothers regarding infant-feeding decisions. It is the time in which they felt the most decision-making power, yet opportunities to prepare for possible challenges were missed.

Ameliorating Psychosocial Risk Among Mothers with Intellectual Impairment.

The purpose of this study was to pilot a flexible, group-based program designed to strengthen the social connections and enhance the psychological well-being of mothers with intellectual impairment. A multi-site, mixed-method, pretest-posttest design was employed. To obtain rich process and outcome data, the evaluation incorporated measures of psychosocial well-being, goal achievement scaling, and interviews with group facilitators and participants. A total of 18 mothers completed the program. Participation was associated with a meaningful reduction in psychological distress with effect sizes ranging from .57 for depression to .71 for anxiety. Participating in the group program gave the mothers something to look forward to each week, opportunities to learn from and support others, and the feeling of "being a part of society". Further research is needed to determine whether these promising results can be replicated, and to evaluate the long-term impact of the program on mothers and their children.

Parental cognitive impairment and child maltreatment in Canada.

OBJECTIVES: The aim of this study was to determine the prevalence of parental cognitive impairment in cases opened for child maltreatment investigation in Canada, and to examine the relationship between parental cognitive impairment and maltreatment investigation outcomes including substantiation, case disposition and court application. METHODS: The method was secondary analysis of the Canadian Incidence Study of Child Abuse and Neglect (CIS-2003) core-data, which is derived from a multi-stage stratified cluster sample of 11,562 child maltreatment investigations. RESULTS: Parental cognitive impairment was noted in 10.1% of sampled cases that were opened for child maltreatment investigation in 2003, and in 27.3% of sampled cases that resulted in child welfare court application. Neglect was the most common cause of concern. With child and case characteristics held constant, parental cognitive impairment predicted investigation outcomes. The data further suggest that the relationship between parental cognitive impairment and investigation outcomes was partially mediated by perceived parent non-cooperation, mental health issues and low social support. CONCLUSIONS: The number of children who are living with a parent with cognitive impairment and who are referred for protective services is thought to be increasing. Building systems capacity to support parents with cognitive impairment and promote child wellbeing is therefore essential to containing the human and economic costs of maltreatment and out-of-home care. PRACTICE IMPLICATIONS: A broad-spectrum approach is needed to support parents with cognitive impairment and their children. Equipping services with the knowledge, skills, and mandate they need to deliver evidence-based parent training is vital. However, strategies are also needed to tackle discrimination, alleviate family poverty, strengthen the social ties of parents with cognitive impairment and in turn, improve the life chances of their children.

Child maltreatment investigations involving parents with cognitive impairments in Canada.

The authors examined decision making and service referral in child maltreatment investigations involving children of parents with cognitive impairments using the Canadian Incidence Study of Reported Child Abuse and Neglect (CIS-2003) core-data. The CIS-2003 includes process and outcome data on a total of 1,243 child investigations (n = 1,170 weighted) in which parental cognitive impairment was noted. Employing binary logistic regression analyses, the authors found that perceived parent noncooperation was the most potent predictor of court application. Alternative dispute resolution was rarely utilized. The findings from this study highlight the need for development and utilization of alternative dispute resolution strategies, worker training, dissemination of evidence-based parent training programs, and implementation of strategies to alleviate poverty and strengthen the social relationships of parents with cognitive impairments and promote a healthy start to life for their children.