The lived experience of mothering a child with autism: a hermeneutic phenomenological understanding

Autism Spectrum Disorder is a complex developmental disorder with increasing prevalence. Despite the significant role of mothers, often seen as primary caregivers, there is limited understanding of this experience. The purpose of this study was to explore the everyday experience of mothers with children with autism. Accounts of lived experience were collected through research conversations with six mothers and analyzed using van Manen’s (1990) orientation to hermeneutic phenomenology. The main themes include: It Can’t Be Autism, The Womb is Extended, The Locus of Other, and The Womb is Now and is Forever. The findings suggest that mothers experienced a transformation from mother to mother with a child with autism; one that mirrors the transformation from woman to mother (Bergum, 1989). In this transformation, mothers move from suspicion of the potential diagnosis to acceptance that they are mothers with children whose needs define them and potentially, mothers whose wombs are forever extended

Creative processes in co-designing a co-design hub: towards system change in health and social services in collaboration with structurally vulnerable populations.

Background: Co-design is an approach to engaging stakeholders in health and social system change that is rapidly gaining traction, yet there are also questions about the extent to which there is meaningful engagement of structurally vulnerable communities and whether co-design leads to lasting system change. The McMaster University Co-Design Hub with Vulnerable Populations Hub (‘the Hub’) is a three-year interdisciplinary project with the goal of facilitating partnerships, advancing methods of co-design with vulnerable populations, and mobilising knowledge. Aims and objectives: A developmental evaluation approach inspired by experience-based co-design was used to co-produce a theory of change to understand how the co-design process could be used to creatively co-design a co-design hub with structurally vulnerable populations. Methods: Twelve community stakeholders with experience participating in a co-design project were invited to participate in two online visioning events to co-develop the goals, priorities, and objectives of the Hub. Qualitative data were analysed using a thematic content analysis approach. Findings: A theory of change framework was co-developed that outlines a future vision for the Hub and strategies to achieve this, and a visual graphic is presented. Discussion and conclusions: Through critical reflection on the work of the Hub, we focus on the co-creative methods that were applied when co-designing the Hub’s theory of change. Moreover, we illustrate how co-creative processes can be applied to embrace the complexity and vulnerability of all stakeholders and plan for system change with structurally vulnerable populations

Examining Factors Associated with Sleep Quality in Parents of Children 4-10 Years with Autism Spectrum Disorder

Background/Rationale: Sleep quality is an important health indicator, yet parents of children with Autism Spectrum Disorder (ASD) often report poorer sleep compared to parents of typically developing children. When parents do not obtain enough good quality sleep, health and daytime functioning may be compromised. This means that the onus of care is placed on already stressed and exhausted parents. Although poor sleep quality may lead to significant negative health consequences, it has been remarkably understudied in parents of children with ASD. Purpose: This study examined the prevalence of poor sleep quality in parents of children 4-10 years with ASD and tested a model of parent factors (i.e., resources, appraisals, and coping) expected to moderate the relationships between child sleep problems, parenting stress, and parent sleep quality at a single point in time. Methods: In this cross-sectional observational research, 214 parents of children with ASD completed the study. Parent sleep quality was examined using survey methods. Sleep measures included the Pittsburgh Sleep Quality Index (PSQI) (parent sleep) and the Children’s Sleep Habits Questionnaire (CSHQ) (sleep in children of parents in this study). Six regression models were tested using multivariable linear and moderated regression. Results: Mean (SD) PSQI scores for parents in this sample was 8.81 (3.76), with most parents scoring above the clinical cut-off of >5 (152, 77.6%). Mean (SD) CSHQ scores for children of the parents in this sample was 54.03 (8.32), which exceeds the clinical cut-off of >41, with most parents scoring their child above the clinical cut-off (182, 96.3 %). Overall, when parenting stress, child sleep problems, and all expected moderators were modelled together with parent sleep quality, child sleep problems was the only significant predictor (Beta = 0.081, p = 0.031). Significance/Implications: Findings from this study suggest that children’s sleep problems was the single most important factor when considering what impacts parent sleep quality. However, both parents and their 4-10-year old children with ASD experienced sleep disturbances. Although the expected moderators help to explain the variance in parent sleep quality, their buffering effects may not be enough when parents sleep poorly.Ph.D

Informed Strangers: Witnessing and Responding to Unethical Care as Student Nurses

Nursing students occupy a unique perspective in clinical settings because they are informed, through education, about how patient care ought to happen. Given the brevity of placements and their “visiting status” in clinical sites, students are less invested in the ethos of specific sites. Subsequently, their perspectives of quality care are informed by what should happen, which might differ from that of nurses and patients. The purpose of this study was to identify predominant themes in patient care, as experienced by students, and the influence that these observations have on the development of their ethical reasoning. Using a qualitative descriptive approach in which 27 nursing student papers and three follow-up in-depth interviews were analyzed, three main themes emerged: Good employee, poor nurse; damaged care; and negotiating the gap. The analysis of the ethical situations in these papers suggests that students sometimes observe care that lacks concern for the dignity, autonomy, and safety of patients. For these student nurses, this tension led to uncertainty about patient care and their eventual profession

PRISMA2009_Checklist_JAN2018 – Supplemental material for Sleep Outcomes for Parents of Children With Neurodevelopmental Disabilities: A Systematic Review

<p>Supplemental material, PRISMA2009_Checklist_JAN2018 for Sleep Outcomes for Parents of Children With Neurodevelopmental Disabilities: A Systematic Review by Samantha K. Micsinszki, Marilyn Ballantyne, Kristin Cleverley, Pamela Green and Robyn Stremler in Journal of Family Nursing</p

JFNAppendix_(JAN24) – Supplemental material for Sleep Outcomes for Parents of Children With Neurodevelopmental Disabilities: A Systematic Review

<p>Supplemental material, JFNAppendix_(JAN24) for Sleep Outcomes for Parents of Children With Neurodevelopmental Disabilities: A Systematic Review by Samantha K. Micsinszki, Marilyn Ballantyne, Kristin Cleverley, Pamela Green and Robyn Stremler in Journal of Family Nursing</p

Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research

Abstract Background In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos covered challenges in aspects of the research process including (1) forming a project team; (2) identifying project objectives and priorities; (3) agreeing on results; and (4) carrying out knowledge translation. Methods The purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. We evaluated whether the training videos and facilitated discussion of the simulations helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. An explanatory sequential two-phase mixed methods design was used. Phase 1 (quantitative) included two training workshops and a pre/post-training survey. Phase 2 (qualitative) included two qualitative focus groups. Results of each phase were analyzed separately and then combined during interpretation. Results Sixteen individuals (including researchers/research staff, trainees, family members, clinicians) took part in this research study. Overall, participants were highly receptive to the training, providing high scores on measures of acceptability, appropriateness, and feasibility. While the training videos and facilitated discussion of the simulations were found to increase participants’ knowledge and ability to engage in authentic and meaningful POR, we found no significant change in attitude or intent. Recommendations about the simulation content and delivery were provided to inform for future use. Conclusions The simulations were found to be a positive and impactful way for collaborative research teams to build knowledge and ability to engage in authentic and meaningful POR. Recommendations for future work include covering different content areas with varying levels of nuance; and offering the training to stakeholders in a variety of roles, such as those higher-ranked academic positions

Patients and Families as Partners in Patient-Oriented Research: How Should They Be Compensated?

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and family partners and report how existing resources can be leveraged to compensate patient and family partners fairly and appropriately. We also present some of our first-hand experiences with patient and family compensation and offer suggestions for research leaders, agencies, and organizations so that the health care stakeholders can collectively move toward more equitable recognition of patient and family partners in research