I’m Here; I’m Queer: How One Parent Advocates for the Inclusion of Queer Youth

Educators and school administration are tasked with creating schools that support and affirm LGBTQ+ (lesbian, gay, bisexual, transgender, and queer) students and families. This study explores a high school in a conservative community as one parent attempts to advocate for their transgender child and other LGBTQ+-identifying students. Although school employees are mandated by state and federal laws to ensure that all students are free from bullying and harassment, the research highlights that schools remain hostile for many LGBTQ+ students. This article provides reflection questions throughout the case as a way for school leadership to grapple with and challenge their thinking regarding LGBTQ+-affirming strategies in their schools.

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

Background Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Methods We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Results Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include “The care team treats my child’s physical symptoms so that my child has as good a quality of life as possible”, “I have regular access to on-call services from our care team”, and “The nurses have the knowledge, skills, and experience to support my child’s palliative or hospice care at home.” Conclusions The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.

Autistic adult and non-autistic parent advocates: Bridging the divide

Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. However, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advocacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence. Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars. Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and nonautistic parent advocates and offer three principles for building future alliances to bridge the divide between autistic adults and nonautistic parents. Implications: The chapter ends with optimism that US national priorities can bridge previous gulfs, creating space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people and their families and communities.

Power to Engage, Power to Resist: A Structuration Analysis of Barriers to Parental Involvement

Parents face varying degrees of difficulty with getting involved in their children’s schools. Using data from a study of parent members of a community organization and structuration theory, I examined how and why parents encountered resistance to their attempts to be more involved and to advocate for their children. This work can broaden our conception of barriers to parental involvement and serve as an alert to parent advocates, parents of children of color, and parents of children in special education, as they tend to experience the most challenges. I hope that it will also inspire educators to reconsider their actions within this system and be more courageous in their own advocacy for children.