Advocacy for Children With Social-Communication Needs: Perspectives From Parents and School Professionals

Burke, Meghan; Meadan, Hedda; Patton, Kimberly A.; Pearson, Jamie N.; Cummings, Katrina P.; Lee, Chung Eun

doi:10.1177/0022466917716898

Cited by 35 publications

(22 citation statements)

References 13 publications

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“…To develop the interview protocol, an extensive literature search related to families of individuals with disabilities (Haines et al, 2017; Leiter & Krauss, 2004; Wang, Mannan, Poston, Turnbull, & Summers, 2004) and special education advocacy (Burke et al, 2016; Burke et al, 2018; Goldman et al, 2017; Trainor, 2010) was conducted. Based on the literature review, an initial protocol was developed and reviewed by 10 families of individuals with disabilities as well as four experts in qualitative methodology and special education advocacy.…”

Section: Methodsmentioning

confidence: 99%

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Exploring the Special Education Advocacy Process According to Families and Advocates

2018

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Although many parents report needing advocates to receive special education services for their children with disabilities, the advocacy process is largely unexplored especially in relation to school and child outcomes. The purpose of this study was to explore the special education advocacy process by conducting interviews with nine parent–advocate dyads. Findings indicate that advocates and parents agreed on the advocacy process. Participants reported that schools often responded positively to the advocate; however, some schools were confrontational and surprised. Regardless of the school’s response, advocates and parents perceived that advocacy positively influenced child and family outcomes. Implications for research, practice, and policy are discussed.

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Section: Methodsmentioning

confidence: 99%

“…Furthermore, little is understood about the school’s response to an advocate. Burke and colleagues (2018) conducted focus groups with school professionals and parents of children with disabilities about parent advocacy. Participants reported that the school often responded positively to parent advocacy.…”

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confidence: 99%

Exploring the Special Education Advocacy Process According to Families and Advocates

2018

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“…Within this theory, championing involves navigating services, advocating, upskilling, accessing supportive relationships, building emotional resilience and establishing sustainable routines. There is a significant body of evidence that highlights the importance of advocacy in enabling families to navigate systems (Burke et al., 2018; Heer et al., 2015). The importance of knowledge and skills has also been established (Batool & Khurshid, 2015).…”

Section: Discussionmentioning

confidence: 99%

Confident championing: A grounded theory of parental adjustment following a child’s diagnosis of developmental disability

O’Connor

Carpenter

Coughlan

2021

Brit J Learn Disabil

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Accessible summary This paper is about how parents adjust to parenting their child who has a developmental disability. We spoke to parents about their experiences and developed a theory to help explain how parents adjust when their child has a developmental challenge. As well as describing the stress, that parents experience, this theory also captures the fulfilment and sense of purpose that parents experience as they parent their child. This research is important because it helps explain what happens for parents after their child's diagnosis and provides suggestions on how services can improve to help families. Abstract This paper describes a study exploring the parental response to the diagnosis of their child's developmental disability. A classic grounded theory methodology was used to analyse data comprising 19 interviews and 11 memoirs written by parents. The theory explains how parents adjust to champion their child, who has been identified as having a developmental challenge. At the heart of becoming a champion is a psychological process in which parents refine their perspectives on disability awareness, their aspirations and parenting capacity as they develop their championing skills. Refining perspectives and championing are influenced by two factors: the nature of the child's challenges and service factors. The theory of Confident Championing offers a multivariant model that explains the dynamic nature of the adjustment process, capturing both the stress and the fulfilment and sense of purpose that parents experience.

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“…Prior studies underscore the value of fully partnering with parents in making decisions about their child’s postoperative care plans ( 21 , 22 ). Care is more likely optimized when families are empowered to “speak up” about their needs and concerns, especially when clinicians are not sufficiently involving and informing them ( 23 ). Across patients, there are routine aspects to postoperative care management that could serve as touch points to ensure high-quality patient and family-centered care.…”

Section: Discussionmentioning

confidence: 99%

Parent Perspectives on Short-Term Recovery After Spinal Fusion Surgery in Children With Neuromuscular Scoliosis

Garrity

Singer

Ward

et al. 2020

Journal of Patient Experience

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Family perspectives on short-term recovery after spinal fusion for neuromuscular scoliosis are essential for improving patient outcomes. Semistructured interviews were conducted with 18 families of children within 3 months after spinal fusion performed August 2017 to January 2019 at a children’s hospital. Interviews were recorded, transcribed, and coded line-by-line by 2 independent reviewers using grounded theory to identify themes. Five themes emerged among families when reflecting back on the postoperative recovery: (1) communicating and making shared decisions regarding postoperative care in a patient- and family-centered manner, (2) setting hospital discharge goals and being ready for discharge, (3) planning for transportation from hospital to home, (4) acquiring supports for caregiving at home after discharge, and (5) anticipating a long recovery at home. Important family perceptions were elicited about the recovery of children from spinal fusion for neuromuscular scoliosis that will inform better perioperative planning for clinicians, future patients, and their families.

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Advocacy for Children With Social-Communication Needs: Perspectives From Parents and School Professionals

Cited by 35 publications

References 13 publications

Exploring the Special Education Advocacy Process According to Families and Advocates

Exploring the Special Education Advocacy Process According to Families and Advocates

Confident championing: A grounded theory of parental adjustment following a child’s diagnosis of developmental disability

Parent Perspectives on Short-Term Recovery After Spinal Fusion Surgery in Children With Neuromuscular Scoliosis

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