121 research outputs found
School based mental health providers\u27 perceptions of their training in serving LGBTQI youth
This study examined school based mental health workers\u27 pre and post-graduate training around working with LGBTQI (Lesbian, Gay, Bisexual, Transgender, Questioning, Intersex) youth. This qualitative, exploratory study aimed to explore the gaps and barriers in existing training for those working with LGBTQI youth in schools and discuss the possible outcomes for creating change in historically heterosexist, homophobic, and transphobic learning environments where professionals are trained and where young people come learn. Twelve participants who have worked in high school settings were interviewed about their graduate training and their current work with meeting the needs of LGBTQI youth in schools. These school-based mental health workers mostly reported that they had minimal instructional training on LGBTQI populations during their time in graduate school. They also stated that unless specifically sought out, LGBTQI populations are not included in the professional development trainings available to practitioners. Implications for clinical training and supporting youth in schools are: to incorporate LGBTQI population topics into graduate level training and high school curriculums and to make such trainings consistent and required as part of professional requirements. Suggestions for further research include an expansion of the literature on the training needs of those working with LGBTQI youth in schools
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Supporting the emotional needs of young people in care: a qualitative study of foster carer perspectives
Young people who have been removed from their family home and placed in care have often experienced maltreatment and there is well-developed evidence of poor psychological outcomes. Once in care, foster carers often become the adult who provides day-to-day support, yet we know little about how they provide this support or the challenges to and facilitators of promoting better quality carer-child relationships. The aim of this study was to understand how carers support the emotional needs of the young people in their care and their views on barriers and opportunities for support. Participants were 21 UK foster carers, recruited from a local authority in England. They were predominantly female (86%), aged 42-65 years old and ranged from those who were relatively new to the profession (<12 months' experience) to those with over 30 years of experience as a carer. We ran three qualitative focus groups to gather in-depth information about their views on supporting their foster children's emotional well-being. Participants also completed short questionnaires about their training experiences and sense of competence. Only half of the sample strongly endorsed feeling competent in managing the emotional needs of their foster children. While all had completed extensive training, especially on attachment, diagnosis-specific training for mental health problems (eg, trauma-related distress, depression) was less common. Thematic analysis showed consistent themes around the significant barriers carers faced navigating social care and mental health systems, and mixed views around the best way to support young people, particularly those with complex mental health needs and in relation to reminders of their early experiences. Findings have important implications for practice and policy around carer training and support, as well as for how services support the mental health needs of young people in care
Identifying barriers to clinical trial participation with families affected by fragile X syndrome
Fragile x syndrome (FXS) is thought to be the most common inherited form of
intellectual and developmental disability and the most common known single gene
cause of autism. The prevalence of FXS is approximately 1.4 per 10,000 males and 0.9
per 10,000 females. Learning difficulties in people with FXS can vary from mild to
severe however it is most common to be within the mild to moderate range, with
males often more affected than females. The current medical treatments for FXS are
primarily symptomatic in nature; and include the use of selective serotonin re-uptake
inhibitors for anxiety, stimulants for attention deficit hyperactivity disorder and
antipsychotics for irritability or aggressive behaviour. However, our understanding
of FXS has now progressed to a stage where treatments selected to target the
underlying neurobiology are now being trialled. Experience conducting research
studies at The Patrick Wild Centre into this condition has suggested that some families
are reluctant to take part in clinical trials making recruitment challenging. Therefore,
this study was designed to understand barriers to participation specifically amongst
patients with the condition and their families.
The primary aim of this study was to identify the barriers to research participation.
The second aim of the study was to find out how barriers to clinical trial participation
could be overcome in order to maximise recruitment for future studies. A mixed
method design was used to collect both quantitative and qualitative data. Participants
were identified from the UK Fragile X Society mailing list by a member of the Fragile
X Society, The Patrick Wild Centre mailing list and through advertisements on the
Patrick Wild Centre website, Facebook and Twitter feeds. A quantitative
questionnaire was completed by 328 parents, carers, family members of individuals
with FXS or by individuals with FXS. Following this, three focus groups took place in
Chelmsford, Bristol and Edinburgh. This study demonstrated that there are many different factors which may negatively
influence motivation to participate in a clinical trial in this group. However, the main
barriers to participation were concerns about possible side effects, travel, requirement
for blood tests and financial reasons. When these were explored further during focus
groups it was evident that these barriers were not as clear as they may have appeared
and had many complexities to them. The main way to overcome barriers that was
repeatedly discussed in each focus group was the importance of accessible
information in helping families to understand the study including any potential safety
issues. This study highlights that while there is no one thing that researchers can do
that will work for everyone, there are many things that researchers can do to improve
participation such as making their research more individual, flexible and
accommodating
Clinical and behavioural features of SYNGAP1-related intellectual disability: a parent and caregiver description
BACKGROUND: SYNGAP1-related intellectual disability (ID) is a recently described neurodevelopmental disorder that is caused by pathogenic variation in the SYNGAP1 gene. To date, the behavioural characteristics of this disorder have mainly been highlighted via the prevalence of existing diagnoses in case series. We set out to detail the behavioural features of this disorder by undertaking interviews with those who have a child with SYNGAP1-related ID to allow them to describe their childâs behaviour. METHODS: We conducted 27 semi-structured interviews with parents and caregivers which covered basic information (e.g., age, gender), family history, perinatal history, past medical history, developmental history, epilepsy, behavioural history, and a general description of their childâs behaviour. RESULTS: Using a mixed quantitative and qualitative approach, the responses from the parents indicated that those with SYNGAP1-related ID showed high rates of autism spectrum disorder (52%), difficulties with fine and gross motor skills, delays in language development, and a high prevalence of epilepsy (70%). A qualitative analysis highlighted their general behaviour affected the themes of daily living skills, distress-related behaviours, emotional regulation, difficulties with change, a lack of danger awareness, and sensory differences. Sensory features described involved auditory, visual, tactile, gustatory, and proprioceptive themes. CONCLUSIONS: Our findings and behavioural descriptions provide important insights as well as implications for the diagnosis and care of those with SYNGAP1-related ID. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s11689-022-09437-x
Visual social attention in SYNGAP1-related intellectual disability
SYNGAP1-ID is a neurodevelopmental disorder caused by a mutation of the SYNGAP1 gene. Characterized by moderate to severe developmental delay, it is associated with several physical and behavioral issues as well as additional diagnoses, including autism. However, it is not known whether social cognitive differences seen in SYNGAP1-ID are similar to those previously identified in idiopathic or other forms of autism. This study therefore investigated visual social attention in SYNGAP1-ID. Eye movements were recorded across three passive viewing tasks (face scanning, pop-out, and social preference) of differing social complexity in 24 individuals with SYNGAP1-ID and 12 typically developing controls. We found that SYNGAP1-ID participants looked at faces less than the controls, and when they did look at faces, they had less time looking at and fewer fixations to the eyes. For the pop-out task, where social and nonsocial objects (Phone, car, face, bird, and face-noise) were presented in an array, those with SYNGAP1-ID spent significantly less time looking at the phone stimulus as well as fewer fixations to the face compared with the typically developing controls. When looking at two naturalistic scenes side by side, one social in nature (e.g., with children present) and the other not, there were no differences between the SYNGAP1-ID group and typically developing controls on any of the examined eye tracking measures. This study provides novel findings on the social attention of those with SYNGAP1-ID and helps to provide further evidence for using eye tracking as an objective measure of the social phenotype in this population in future clinical trials.</p
Designing high-performance superconductors with nanoparticle inclusions: Comparisons to strong pinning theory
One of the most promising routes for achieving high critical currents in superconductors is to incorporate dispersed, non-superconducting nanoparticles to control the dissipative motion of vortices. However, these inclusions reduce the overall superconducting volume and can strain the interlaying superconducting matrix, which can detrimentally reduce T. Consequently, an optimal balance must be achieved between the nanoparticle density n and size d. Determining this balance requires garnering a better understanding of vortexânanoparticle interactions, described by strong pinning theory. Here, we map the dependence of the critical current on nanoparticle size and density in (Y, Gd)BaCuO films in magnetic fields of up to 35 T and compare the trends to recent results from time-dependent GinzburgâLandau simulations. We identify consistency between the field-dependent critical current J (B) and expectations from strong pinning theory. Specifically, we find that J â B, where α decreases from 0.66 to 0.2 with increasing density of nanoparticles and increases roughly linearly with nanoparticle size d/Ο (normalized to the coherence length). At high fields, the critical current decays faster (âŒB), suggesting that each nanoparticle has captured a vortex. When nanoparticles capture more than one vortex, a small, high-field peak is expected in Jc(B). Due to a spread in defect sizes, this novel peak effect remains unresolved here. Finally, we reveal that the dependence of the vortex creep rate S on nanoparticle size and density roughly mirrors that of α, and we compare our results to low-T nonlinearities in S(T) that are predicted by strong pinning theory
Endocrine Dysfunction in Female FMR1 Premutation Carriers: Characteristics and Association with Ill Health
Female FMR1 premutation carriers (PMC) have been suggested to be at greater risk of ill health, in particular endocrine dysfunction, compared to the general population. We set out to review the literature relating to endocrine dysfunction, including premature ovarian insufficiency (POI), in female PMCs, and then to consider whether endocrine dysfunction in itself may be predictive of other illnesses in female PMCs. A systematic review and pilot data from a semi-structured health questionnaire were used. Medline, Embase, and PsycInfo were searched for papers concerning PMCs and endocrine dysfunction. For the pilot study, self-reported diagnoses in females were compared between PMCs with endocrine dysfunction (n = 18), PMCs without endocrine dysfunction (n = 14), and individuals without the premutation (n = 15). Twenty-nine papers were identified in the review; the majority concerned POI and reduced fertility, which are consistently found to be more common in PMCs than controls. There was some evidence that thyroid dysfunction may occur more frequently in subgroups of PMCs and that those with endocrine difficulties have poorer health than those without. In the pilot study, PMCs with endocrine problems reported higher levels of fibromyalgia (p = 0.03), tremor (p = 0.03), headache (p = 0.01) and obsessiveâcompulsive disorder (p = 0.009) than either comparison group. Further larger scale research is warranted to determine whether female PMCs are at risk of endocrine disorders other than those associated with reproduction and whether endocrine dysfunction identifies a high-risk group for the presence of other health conditions
The Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA) in Georgia: Women Covered and Medicaid Costs in 2003
The Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA) provided states with an optional Medicaid eligibility category for uninsured women with breast and/or cervical cancers. The BCCPTA is the first and only such effort to use a population-based public health screening program, the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) to provide a pathway to publicly funded health insurance for otherwise uninsured low-income women. Georgia was one of the first states to adopt the BCCPTA and was one of only twelve states that provided Medicaid eligibility to women screened by non-NBCCEDP providers. We use 2003 Georgia Medicaid claims and enrollment data to investigate the scope of the stateâs BCCPTA enrollment and enrolleesâ costs as well as demographic characteristics of breast and cervical cancer patients in Georgiaâs BCCPTA and other Medicaid eligibility categories. Georgiaâs Medicaid coverage of women with breast and/or cervical cancer under BCCPTA accounted for over one-third of all women with these cancers covered by the state in 2003 alone. Those newly eligible under BCCPTA were more likely to have breast, as opposed to cervical, cancer and to be older than those women with breast/cervical cancers enrolled in Georgia Medicaid due to low-income, pregnancy or disability status. Georgiaâs Medicaid program spent over 12,000 per enrollee. BCCPTA enrollee costs were more similar to those for disabled women with these cancers, about 7,500. By expanding Medicaid coverage, BCCPTA can potentially bring women in at earlier stages of their cancer and provide needed coverage/treatment. Future research should examine the potential effect of BCCPTA on reduced morbidity and mortality among these low-income women
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