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Psychosocial development and care in patients with orofacial clefting

Chapter by: Blitz, Aileen
in: Cleft and Craniofacial Orthodontics by
[S.l.] : wiley, 2023
pp. 619-629
ISBN: 9781119778363
CID: 5425432

Panel Workshop for parents/caregivers: Advocacy for school age children with craniofacial conditions [Meeting Abstract]

Blitz, A; Russell, J; Chibbaro, P; Zuckerberg, D
Background/Purpose: Our goal is to present to mental health professionals and craniofacial center providers a Panel Workshop on helping parents/caregivers learn how to best advocate for their school age children with craniofacial conditions who experience academic and social challenges. Information about various types of schools, choosing a school, enrollment and school placement, in-school special services, parent-teacher conferences, how to transfer to another school, at home tutoring following surgery, and other related topics will be discussed. In addition, we will address academic stress, developing a realistic schedule, bullying interventions, technology and social media guidelines, and provide families with relevant resources. Methods/Description: The panelists focused on topics including: academic advocacy, academic testing, neuropsychological and behavioral assessments, IEP's(Individual Educational Plans), optimal classroom placement, academic modifications and accommodations, in-school special services, how to ease the burden of academic stress, and providing information on available services. Social advocacy focused on issues such as how to help children feel comfortable starting school, transitions to grades and new schools, return to school after surgery, and ways to cope with social issues including bullying. Panelists included the craniofacial team psychologist, senior social worker, nurse practitioner, a nonprofit organization's director of family programs, as well as the parent of a school age child, an adult patient, a school administrator, and an educational/advocacy representative from a community organization
EMBASE:631558036
ISSN: 1545-1569
CID: 4417722

Examining the Psychosocial Needs of Adolescents With Craniofacial Conditions: A Mixed-Methods Approach

Riklin, Eric; Calandrillo, Dominique; Blitz, Aileen; Zuckerberg, Dina; Annunziato, Rachel A
OBJECTIVE/UNASSIGNED:To determine, for intervention development, the psychosocial needs of adolescents diagnosed with a craniofacial condition who attended focus group sessions. DESIGN/UNASSIGNED:A mixed-methods design combining qualitative focus groups with quantitative measures. SETTING/UNASSIGNED:An outpatient clinic at a major medical center in Manhattan, New York. PARTICIPANTS/UNASSIGNED:Fourteen adolescents, aged 14 to 18, with craniofacial conditions. MAIN MEASURES/UNASSIGNED:Participants completed measures assessing a range of psychological constructs. Average scores were compared to clinical cutoff scores and normative data for adolescents. The 2 focus groups were coded using an inductive approach to assess pertinent themes. Additionally, the acceptability and feasibility of a proposed intervention was measured. RESULTS/UNASSIGNED:Adolescents with craniofacial conditions were within normal ranges for quality of life, self-esteem, and body image and they reported higher resiliency. They were above cutoff scores for perceived stress and post-traumatic stress disorder symptoms and below cutoff scores for mindfulness. When compared to normative samples, they displayed higher perceived social support, but lower coping. Based on qualitative analyses, 6 themes emerged: stress, bullying, coping, resiliency, mindfulness, and social support. Both qualitative and quantitative analyses revealed most participants were supportive of a future intervention for this population. CONCLUSIONS/UNASSIGNED:The present study identified several factors associated with psychological well-being of adolescents with craniofacial diagnoses and demonstrates the importance of creating interventions to target specific psychosocial needs. Findings from this study may guide researchers in developing and refining a specific program for this population and provide information to help those with craniofacial conditions who are experiencing psychosocial challenges.
PMID: 31514527
ISSN: 1545-1569
CID: 4101342

Self-Inflicted Gunshot Wound as a Consideration in the Patient Selection Process for Facial Transplantation

McQuinn, Michelle W; Kimberly, Laura L; Parent, Brendan; Diaz-Siso, J Rodrigo; Caplan, Arthur L; Blitz, Aileen G; Rodriguez, Eduardo D
Facial transplantation is emerging as a therapeutic option for self-inflicted gunshot wounds. The self-inflicted nature of this injury raises questions about the appropriate role of self-harm in determining patient eligibility. Potential candidates for facial transplantation undergo extensive psychosocial screening. The presence of a self-inflicted gunshot wound warrants special attention to ensure that a patient is prepared to undergo a demanding procedure that poses significant risk, as well as stringent lifelong management. Herein, we explore the ethics of considering mechanism of injury in the patient selection process, referring to the precedent set forth in solid organ transplantation. We also consider the available evidence regarding outcomes of individuals transplanted for self-inflicted mechanisms of injury in both solid organ and facial transplantation. We conclude that while the presence of a self-inflicted gunshot wound is significant in the overall evaluation of the candidate, it does not on its own warrant exclusion from consideration for a facial transplantation.
PMID: 31298191
ISSN: 1469-2147
CID: 4009892

Developing resilience with social stories [Meeting Abstract]

Blitz, A; Zuckerberg, D; Russell, J
Background/Purpose: Our goal is to present to mental health professionals and craniofacial center providers a 2-part workshop series called "Social Stories." Social Stories are a creative and effective tool for helping children with craniofacial conditions cope with feelings that arise in new and/or stressful situations: such as surgery, doctor visits, and school transitions. This presentation will teach psychosocial teams at other craniofacial centers how to develop workshops using Social Stories as a platform for helping school-age children and their parents cope with stressful and/or novel situations. The first workshop of the 2-part series was developed for parents of children with craniofacial conditions. Parents learned about the concept of Social Stories and identified situations that their child was struggling with. Parents were asked to provide detailed information for these situations and help collect images and photos to be used in their child's Social Story Workbooks. The second workshop was developed for children ages 8 to 12 years old with craniofacial conditions. In this workshop, the children created their Social Story Workbooks, utilizing a combination of ideas, images, and photographs from home (provided by parents) and collected by the psychosocial team. Parent participants completed a psychological screening questionnaire to help us assess how this intervention impacted their child's level of coping with stressful and novel situations. Methods/Description: The concept of Social Stories, initially developed for children and adolescents with autism, was created and trademarked by Carol Gray in 1991. Our team modified this modality for children with craniofacial conditions to help improve their ability to cope with distressing or novel situations. Social Stories can include specific information about expectations, emotions, and feelings and why they occur, and empower children to gain mastery and resilience
EMBASE:629084829
ISSN: 1545-1569
CID: 4071092

Comprehensive team management of the patient and family undergoing orthognathic surgery [Meeting Abstract]

Chibbaro, P; Blitz, A; Cohen, S; Malkoff, D; Maroutsis, M; Maroutsis, S; Ruggiero, J; Woldan, L
Background/Purpose: Orthognathic surgeries (Alveolar Bone Graft, LeFort 1/2/3, Mandibular Advancement, Distraction Osteogenesis) require extensive preoperative assessments/planning/education, as well as individualized orthodontic preparation and ongoing postoperative management. This is a challenging process for both the patient and familyphysically, emotionally and financially. In order to provide optiomal education and support, a comprehensive team approach is needed. Methods/Descriptions: An experienced team's protocol for comprehensive management of the orthognathic patient and family will be presented in a 30 minute panel. This will include: nursing (preparation for surgery, description of the procedures, hospitalization, postoperative course, managing pain/swelling, home care needs, activity restrictions); nutrition (preoperative assessment, calculating postoperative calorie/ protein needs to optimize healing, description of diets-how to progress, foods to allow/avoid, adaptive feeding supplies); orthodontics (preoperative/ postoperative orthodontic requirements, education regarding postoperative mouth care, use of elastics, progression of diet); psychology/social work (preoperative psycho/social assessment- concerns/ anxieties about undergoing surgery, change in appearance, impact on relationships, activities, employment, self-image, transitioning from pediatric to adult care); speech (preo/postoperative assessment of velopharyngeal incompetence (VPI), education about the chances of developing VPI). In addition, insurance issues (including strategies for how to successfully obtain coverage for orthognathic procedures will be discussed, as well as presentation of a short video of the experience from the perspective of a patient and family
EMBASE:611868364
ISSN: 1545-1569
CID: 2241232

Facial difference: beyond the medical issues [Editorial]

Blitz, Aileen; Sklenar, Dennis
PMID: 15213526
ISSN: 1049-2275
CID: 115263