Establishing Consensus for Essential Elements in Returning to Learn Following a Concussion.

BACKGROUND: Returning to learn following a concussion is the process of managing a student's recovery during the school day by implementation of academic supports with varying intensity. Due to a lack of consensus or even guidance on Return to Learn, this paper set out to establish cross discipline consensus on some essential elements of Return to Learn using a Delphi method. METHODS: Sixteen national organizations participated in a Delphi process to reach consensus on overarching themes of Return to Learn focused on: returning a student to school, composition of the school-based concussion management team, progress-monitoring, educational safeguards, neuropsychological testing, and legislation. Two rounds of questionnaires were disseminated via email using a Delphi process. Consensus was established during round 2. RESULTS: Twelve national organizations were able to reach consensus and endorse 13 essential elements of Return to Learn following a concussion. CONCLUSIONS: There continues to be limited research on concussion Return to Learn leading to confusion in the field. In this paper, we demonstrate consensus on a number of essential elements, from a wide variety of professional disciplines who participate in the care of students following a concussion, as a starting place for some guidance on Return to Learn.

Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel-Lindau disease.

Despite well-established protocols for the medical management of Von Hippel-Lindau disease (VHL), families affected by this rare tumour syndrome continue to face numerous psychological, social, and practical challenges. To our knowledge, this is one of the first qualitative studies to explore the psychosocial difficulties experienced by families affected by VHL. A semi-structured interview was developed to explore patients' and carers' experiences of VHL along several life domains, including: self-identity and self-esteem, interpersonal relationships, education and career opportunities, family communication, physical health and emotional well-being, and supportive care needs. Quantitative measures were also used to examine the prevalence of anxiety, depression, and disease-specific distress in this sample. Participants were recruited via the Hereditary Cancer Clinic at the Prince of Wales Hospital in Sydney, Australia. A total of 23 individual telephone interviews were conducted (15 patients, 8 carers), yielding a response rate of 75%. A diverse range of experiences were reported, including: sustained uncertainty about future tumour development, frustration regarding the need for lifelong medical screening, strained family relationships, difficulties communicating with others about VHL, perceived social isolation and limited career opportunities, financial and care-giving burdens, complex decisions in relation to childbearing, and difficulties accessing expert medical and psychosocial care. Participants also provided examples of psychological growth and resilience, and voiced support for continued efforts to improve supportive care services. More sophisticated systems for connecting VHL patients and their families with holistic, empathic, and person-centred medical and psychosocial care are urgently needed.

Oral contraceptive use in women at increased risk of breast/ovarian cancer: knowledge and attitudes.

BACKGROUND: Several of the health benefits and risks associated with the combined oral contraceptive pill (COCP) are particularly relevant to women at risk of hereditary breast and/or ovarian cancer. METHODS: Eighty-three past female patients of an Australian hereditary cancer clinic aged 18-50 years completed a self-report questionnaire to assess their contraceptive practices, knowledge and information needs (44% response rate). RESULTS: Ninety-two percent of participants had previously used the COCP, with a mean knowledge score of 3.63 out of 8. Nearly 40% reported that their family history of cancer was one reason they discontinued/avoided using the COCP. Women reported receiving insufficient COCP information and preferred a targeted information leaflet to answer their questions. CONCLUSIONS: Although recall bias may have affected some women, there is a clear need to improve the consistency of information delivered to women at risk of hereditary breast and/or ovarian cancer, to ensure informed contraceptive choices are made.

Development and pilot testing of a decision aid for men considering genetic testing for breast and/or ovarian cancer-related mutations (BRCA1/2).

Despite the fact that both men and women can carry a breast/ovarian cancer-related mutation, the main emphasis in genetic counseling for breast/ovarian cancer-related risk remains on females. This study aimed to develop and pilot a decision aid specifically designed for men with a strong family history of breast and/or ovarian cancer who are considering genetic testing. The decision aid was developed by a multidisciplinary team of experts and a consumer representative. It was then reviewed by 27 men who had previously undergone genetic testing to identify a mutation in a BRCA1 or BRCA2 gene. All men who reviewed the decision aid indicated that they would recommend the booklet to other men in the same situation, and 96% of the sample (n = 26) reported being "very satisfied" or "satisfied" with the information contained in the decision aid. The decision aid was perceived by all participants as "very relevant" or "quite relevant" for men considering genetic testing. Ninety-three percent of men felt that it was easy to weigh the pros and cons of genetic testing with the help of the decision aid. The perceived impact on participants' emotions and understanding of the genetic testing process was also assessed. Several factors may hinder men from effectively weighing up the potential benefits and risks of genetic testing. A greater understanding of these issues may help health professionals to encourage men with a strong family history of breast and/or ovarian cancer to learn about cancer risk and the appropriate management strategies for themselves and their female relatives.

Validated instructional practices: application to students with traumatic brain injury.

OBJECTIVE: There is a lack of empirical evidence of effectiveness for instructional interventions for children with traumatic brain injury (TBI). This article addresses this issue by providing an in-depth examination of instructional methodologies validated with other populations of students (with and without disability) and their potential for teaching children with TBI. DESIGN: Literature review. CONCLUSIONS: Two instructional approaches--Direct Instruction and cognitive strategy intervention--have significant evidence supporting their use with many populations of children, with and without disabilities, and address many of the common needs and learning characteristics of students with TBI, thus showing particular promise for these students. Given the efficacy of these 2 approaches with students with similar learning and behavioral characteristics, the authors recommend establishing and funding a systematic research agenda to test their effectiveness with students with TBI.

Paediatric traumatic brain injury: a review of pertinent issues.

Children with traumatic brain injury (TBI), regardless of the severity of the injury, often face challenges when living in home, school and community. Their needs are often overlooked and recognition of the long-term consequences is not always central to the management of the child in the school or community. This article provides references to pertinent literature and suggestions for intervention from the clinical experiences of four individuals with extensive experience of the family stresses, educational, cognitive-communicative and behavioural challenges that occur after TBI in children. It provides information regarding these issues, particularly educational situations, and suggests methods that may be useful for service providers and family members.

Improving educational services for students with TBI through statewide consulting teams.

Since 1991, when Traumatic Brain Injury (TBI) was established as a disability category under IDEA, educators nationwide have become increasingly aware of the unique and complex challenges these students present. Yet professionals, advocates and family members share a growing concern that the instructional needs of these students are not being met. School personnel serving these students need systematic support that includes both information about specific aspects of the student's disability and access to expert technical assistance. The goal of the TBI Team model, as developed and implemented in Iowa, Kansas, and Oregon, is to make available to schools statewide a group of well-trained peer consultants who can provide in-service training and ongoing consultation. The TBI Team model has four components: (a) needs assessment, (b) team recruitment, (c) team training, and (d) evaluation of both implementation and outcomes. Trained Team members provide in-service training, classroom consultation, and information and resources for school staff and parents. Team operations are maintained and supported through a central office at the Department of Education. Evaluation data suggest that the Team model is a cost effective and efficient approach to supporting teachers who work with students with TBI.