A supporting role : mothers' perceptions of their child's developing awareness of Down syndrome

Background: Young people with Down syndrome and their families often contend with social stigma. The present study examined this issue from their mothers' perspective. Methods: An interpretative phenomenological approach (IPA) was used to explore mothers' perceptions of their child's developing awareness of their disability and associated social stigma. Interviews were carried out with nine mothers of young people with Down syndrome aged 9–16 years old. Results: All mothers were sensitive to the stigmatized status of Down syndrome and were at pains to protect their child from becoming aware of it. Some mothers had talked about Down syndrome with their child. Other mothers carefully monitored their child for signs that they were ready to talk about it. On the surface, all mothers believed that their child had a limited insight into Down syndrome and stigma but detailed discussion revealed more complex insights. Conclusion: Mothers expressed uncertainty and anxiety about when and how to talk to their child about Down syndrome

Perceptions of Down Syndrome: A growing awareness? Investigating the views of children and young people with Down Syndrome, their non-disabled peers and mothers

A body of literature has examined the understanding adults with intellectual disabilities have of their disability, their awareness of stigma and experiences of stigmatised treatment. The findings across these studies have however been difficult to reconcile. While a number of researchers reported that participants did not appear to be aware of their disability, others found that participants were aware of their disability and were sensitive to the stigmatised treatment they received from others as a result. The methods used by previous researchers have been largely verbal and it is suggested that such methods may have placed constraints on the abilities of people with intellectual disabilities to express themselves. Thus, the mixed findings may in part be accounted for by the reliance on verbally based methods of enquiry. As a result of the previous research having been carried out with adults, little is known about the perceptions children with intellectual disabilities have of their disability or their awareness of social stigma. It is important to know about children's perceptions because early self-perceptions may have an enduring impact on a young person's mental well-being. Further, gaining insight into how the self-perceptions of children with intellectual disabilities develop during childhood may help to inform interventions designed to target the development of positive self-perceptions in children with intellectual disabilities. This thesis will focus on children with Down syndrome. Down syndrome is a chromosomal disorder and one of the most common causes of intellectual disability (Carr, 1995). People with Down syndrome have distinctive facial features, which make them immediately identifiable to others and may mean that people with Down syndrome identify themselves as different from others. The key questions addressed by the present research are: Are children with Down syndrome aware of Down syndrome and do they hold particular feelings about it? The present study was conceptualised as an exploration of children's rudimentary awareness of their disability and the social stigma attached to it. In order to explore children's perceptions, a mixed method approach was chosen. The quantitative component of the study developed pictorial methods to investigate the awareness and views children with Down syndrome hold of Down syndrome. Children completed three experimental 'tasks' that involved colour illustrations and photographs of unfamiliar children, some of which depicted children with Down syndrome and some in which children had no visible disability. Twenty-eight children with Down syndrome took part. There were two age groups; a younger group aged 8 to 12 years old (n= 10) and an older group aged 13 to 17 years old (n=18). The purpose of the two age groups was to explore potential differences in awareness shown by participants with different amounts of social experience. A comparison group of children with no disability allowed the researcher to investigate whether having Down syndrome led to differences in task performance. However, since children with Down syndrome have at least some degree of intellectual impairment, it was necessary to control for cognitive development and age separately. A cognitive ability control group enabled the researcher to ensure, as far as possible, that any differences in task performance that did occur could not be attributed to differences in participants' cognitive ability. The chronological age control group was used to help ensure that potential influence of social experience and learning, acquired with age, were also controlled for. Therefore, two groups of non-disabled participants were recruited; one group were the same chronological ages as participants with Down syndrome and the other were younger in chronological age, in the hope that their verbal ability would match that of participants with Down syndrome. However, despite their younger age, the non-disabled children scored consistently higher than participants with Down syndrome on the measure of verbal ability. Consequently, a verbal ability control group was unfortunately not achieved. Instead, the non-disabled participants were split into three age groups. The first group were younger in age and their verbal ability was closer to that of participants with Down syndrome (n=14). Although not matched on verbal ability, they were still at an earlier developmental stage and served a useful comparison group in this respect. The second group were aged 8 to 12 years old (n= 27) and the third group aged 13 to 17 years (n= 26). These groups served as chronological age-matched controls. The proportion of males and females in the Down syndrome and non-disabled groups were roughly equal. For the qualitative phase of the study, the researcher interviewed a subsample of the children's mothers' to examine what they thought about their child's understanding of Down syndrome and the social stigma attached to it. Ten mothers of children with Down syndrome took part in 1:1 semi-structured interviews. The transcripts were analysed using Interpretative Phenomenological Analysis. The responses of children with Down syndrome on the picture tasks indicated that they discriminated between the photographs of children with and without Down syndrome, they preferred to share social activities with the photographed children with no disability, they identified themselves as similar to the photographs of non-disabled children and they had less positive views about the photographed children with Down syndrome than those with no disability. Participants with no disability also demonstrated a similar bias in favour of non-disabled children during the tasks. Both participants with Down syndrome and non-disabled participants had positive views of themselves, although those with Down syndrome were slightly less positive about themselves than their non-disabled peers. The key finding from the experimental studies was the bias shown by all children in favour of photographs of children with no disability. A contrasting picture emerged from the interviews with mothers. They expressed deep concerns regarding their child's growing distance from non-disabled peers as they grew older. Nevertheless, the mothers believed their children were oblivious to their disability or, at most, were aware of it but viewed it as inconsequential. Mothers reported waiting for their child to take the lead with regards discussing Down syndrome but most reported that their children rarely asked questions related to their disability and, as a result, it was rarely a topic of conversation. A sense of responsibility to talk to their children about their disability was accompanied by deep anxiety over what was best for their children regarding when and how to tell them about Down syndrome. This research has highlighted that children with Down syndrome may be more aware of their disability and how Down syndrome is viewed socially than has been appreciated. It underscores the importance of giving children with communication difficulties a way of expressing their views. Future research should investigate the development of children's self-perceptions in relation to disability and inform ways of investigating children's growing awareness disability and related social attitudes. Such research could have an important role to play in fostering more positive ways of thinking about Down syndrome and equip them to deal with social stigma

A supporting role: mothers’ perceptions of their child’s developing awareness of Down syndrome

Background: Young people with Down syndrome and their families often contend with social stigma. The present study examined this issue from their mothers' perspective. Methods: An interpretative phenomenological approach (IPA) was used to explore mothers' perceptions of their child's developing awareness of their disability and associated social stigma. Interviews were carried out with nine mothers of young people with Down syndrome aged 9–16 years old. Results: All mothers were sensitive to the stigmatized status of Down syndrome and were at pains to protect their child from becoming aware of it. Some mothers had talked about Down syndrome with their child. Other mothers carefully monitored their child for signs that they were ready to talk about it. On the surface, all mothers believed that their child had a limited insight into Down syndrome and stigma but detailed discussion revealed more complex insights. Conclusion: Mothers expressed uncertainty and anxiety about when and how to talk to their child about Down syndrome

Subgenual activation and the finger of blame: individual differences and depression vulnerability.

BACKGROUND: Subgenual cingulate cortex (SCC) responses to self-blaming emotion-evoking stimuli were previously found in individuals prone to self-blame with and without a history of major depressive disorder (MDD). This suggested SCC activation reflects self-blaming emotions such as guilt, which are central to models of MDD vulnerability. METHOD: Here, we re-examined these hypotheses in an independent larger sample. A total of 109 medication-free participants (70 with remitted MDD and 39 healthy controls) underwent fMRI whilst judging self- and other-blaming emotion-evoking statements. They also completed validated questionnaires of proneness to self-blaming emotions including those related to internal (autonomy) and external (sociotropy) evaluation, which were subjected to factor analysis. RESULTS: An interaction between group (remitted MDD v. Control) and condition (self- v. other-blame) was observed in the right SCC (BA24). This was due to higher SCC signal for self-blame in remitted MDD and higher other-blame-selective activation in Control participants. Across the whole sample, extracted SCC activation cluster averages for self- v. other-blame were predicted by a regression model which included the reliable components derived from our factor analysis of measures of proneness to self-blaming emotions. Interestingly, this prediction was solely driven by autonomy/self-criticism, and adaptive guilt factors, with no effect of sociotropy/dependency. CONCLUSIONS: Despite confirming the prediction of SCC activation in self-blame-prone individuals and those vulnerable to MDD, our results suggest that SCC activation reflects blame irrespective of where it is directed rather than selective for self. We speculate that self-critical individuals have more extended SCC representations for blame in the context of self-agency

A mixed methods study of seasonal influenza vaccine hesitancy in adults with chronic respiratory conditions

Background: Seasonal influenza vaccination is recommended for patients with chronic respiratory conditions, but uptake is suboptimal. We undertook a comprehensive mixed methods study in order to examine the barriers and enablers to influenza vaccination in patients with chronic respiratory conditions. Methods: Mixed methods including a survey (n=429) which assessed socio-demographics and the psychological factors associated with vaccine uptake (i.e. confidence, complacency, constraints, calculation and collective responsibility) with binary logistic regression analysis. We also undertook focus groups and interviews (n=59) to further explore barriers and enablers to uptake using thematic analysis. Results: The survey analysis identified that older participants were more likely to accept the vaccine, as were those with higher perceptions of collective responsibility around vaccination, lower levels of complacency, and lower levels of constraints. Thematic analysis showed that concerns over vaccine side effects, lack of tailored information and knowledge, and a lack of trust and rapport with healthcare professionals were key barriers. In contrast, the importance of feeling protected, acceptance of being part of an at-risk group, and feeling a reduced sense of vulnerability after vaccination were seen as key enablers. Conclusions: Our findings showed that the decision to accept a vaccine against influenza is influenced by multiple sociodemographic and psychological factors. Future interventions should provide clear and transparent information about side effects and be tailored to patients with chronic respiratory conditions. Interactions between patients and their healthcare providers have a particularly important role to play in helping patients address their concerns and feel confident in vaccination

What have we learned about what works in sustaining mental health care and support services during a pandemic? Transferable insights from the COVID-19 response

Efforts have been made to adapt the delivery of mental health care and support services to the demands of COVID-19. Here we detail the perspectives and experiences of mental health workers (MHWs), in relation to what they found helpful when adapting mental health services during the COVID-19 pandemic and responding to its demands. We were interested in exploring what has helped to support MHWs' own health and wellbeing given that staff wellbeing is central to sustaining the delivery of quality mental health services moving forward. Individual interviews were conducted with MHWs (n = 30) during the third COVID-19 lockdown. Interviews were audio-recorded, transcribed and managed using NVIVO. Qualitative data was analyzed using an inductive thematic approach. Three major themes were created, which emphasized the importance of: (1) 'self-care and peer support (checking in with each other)', (2) 'team cohesion and collaboration' and (3) 'visible and supportive management and leadership (new ways of working)'. Our findings emphasize the importance of individual, team and systems-based support in helping MHWs maintain their own wellbeing, whilst adapting and responding to the challenges in providing mental health care and support during this pandemic. Guidance and direction from management, with adaptive leadership in providing sustained, efficient, and equitable delivery of mental healthcare, is essential. Our findings support future policy, research and mental health practice developments through sharing important salutogenic lessons learned and transferable insights which may help with preparedness for future pandemic

Frontline experiences of delivering remote mental health supports during the COVID-19 pandemic in Scotland : innovations, insights and lessons learned from mental health workers

COVID-19 restrictions drove rapid adaptations to service delivery and new ways of working within Scotland’s mental health sector. This study explores mental health workers’ (MHWs’) experiences of delivering their services remotely. Twenty participants, who had worked in mental health professions in the National Health Service (NHS) in Scotland throughout the COVID-19 pandemic, took part in online semi-structured interviews. Data was transcribed then analysed using an inductive thematic analysis. Two major themes are reported: (1) ‘Improved Flexibility for both MHWs and Service Users’ and (2) ‘Teletherapies Challenge Therapeutic Boundaries’. In relation to (1) virtual platforms were seen as vital in maintaining patient care throughout the COVID-19 pandemic and a valuable resource for service users (SUs) who had previously struggled with mobility or social anxieties when accessing face-to-face services. Some MHWs’ also noted benefits for their productivity and comfort. Regarding (2) MHWs highlighted that whilst conducting teletherapies from home, work-life boundaries became blurred and, in some instances, typically comforting spaces became associated with the traumatic content discussed by SUs. These stressors seemed to be compounded by MHWs’ isolation, as they were less able to draw upon their colleagues for support. Further, confidentiality could not be assured, as MHWs and SUs alike had to accommodate their family members. These findings highlight important insights from MHWs in adapting to rapid changes in mental health working practices, particularly in relation to the challenges of delivering quality, safe and equitable services and the increased use of teletherapies. Such insights are vital in informing service developments and supporting future pandemic preparedness across a range of healthcare contexts and countries seeking to adopt hybrid models of mental health service delivery

Towards intervention development to increase the uptake of COVID-19 vaccination among those at high risk : outlining evidence-based and theoretically informed future intervention content

Objectives: Development of a vaccine against COVID-19 will be key to controlling the pandemic. We need to understand the barriers and facilitators to receiving a future COVID-19 vaccine so that we can provide recommendations for the design of interventions aimed at maximizing public acceptance. Design: Cross-sectional UK survey with older adults and patients with chronic respiratory disease. Methods: During the UK’s early April 2020 ‘lockdown’ period, 527 participants (311 older adults, mean age = 70.4 years; 216 chronic respiratory participants, mean age = 43.8 years) completed an online questionnaire assessing willingness to receive a COVID-19 vaccine, perceptions of COVID-19, and intention to receive influenza and pneumococcal vaccinations. A free text response (n = 502) examined barriers and facilitators to uptake. The Behaviour Change Wheel informed the analysis of these responses, which were coded to the Theoretical Domains Framework (TDF). Behaviour change techniques (BCTs) were identified. Results: Eighty-six per cent of respondents want to receive a COVID-19 vaccine. This was positively correlated with the perception that COVID-19 will persist over time, and negatively associated with perceiving the media to have over-exaggerated the risk. The majority of barriers and facilitators were mapped onto the ‘beliefs about consequences’ TDF domain, with themes relating to personal health, health consequences to others, concerns of vaccine safety, and severity of COVID-19. Conclusions: Willingness to receive a COVID-19 vaccination is currently high among high-risk individuals. Mass media interventions aimed at maximizing vaccine uptake should utilize the BCTs of information about health, emotional, social and environmental consequences, and salience of consequences

Impulsivity in abstinent alcohol and polydrug dependence: a multidimensional approach.

RATIONALE: Dependence on drugs and alcohol is associated with impaired impulse control, but deficits are rarely compared across individuals dependent on different substances using several measures within a single study. OBJECTIVES: We investigated impulsivity in abstinent substance-dependent individuals (AbD) using three complementary techniques: self-report, neuropsychological and neuroimaging. We hypothesised that AbDs would show increased impulsivity across modalities, and that this would depend on length of abstinence. METHODS: Data were collected from the ICCAM study: 57 control and 86 AbDs, comprising a group with a history of dependence on alcohol only (n = 27) and a group with history of dependence on multiple substances ("polydrug", n = 59). All participants completed self-report measures of impulsivity: Barratt Impulsiveness Scale, UPPS Impulsive Behaviour Scale, Behaviour Inhibition/Activation System and Obsessive-Compulsive Inventory. They also performed three behavioural tasks: Stop Signal, Intra-Extra Dimensional Set-Shift and Kirby Delay Discounting; and completed a Go/NoGo task during fMRI. RESULTS: AbDs scored significantly higher than controls on self-report measures, but alcohol and polydrug dependent groups did not differ significantly from each other. Polydrug participants had significantly higher discounting scores than both controls and alcohol participants. There were no group differences on the other behavioural measures or on the fMRI measure. CONCLUSIONS: The results suggest that the current set of self-report measures of impulsivity is more sensitive in abstinent individuals than the behavioural or fMRI measures of neuronal activity. This highlights the importance of developing behavioural measures to assess different, more relevant, aspects of impulsivity alongside corresponding cognitive challenges for fMRI.This article presents independent research funded by the Medical Research Council as part of their addiction initiative (grant number G1000018). GSK kindly funded the functional and structural MRI scans that took place at Imperial College. The research was carried out at the NIHR/Wellcome Trust Imperial Clinical Research Facility, the NIHR/Wellcome Trust Cambridge Research Facility and Clinical Trials Unit at Salford Royal NHS Foundation Trust, and is supported by the North West London, Eastern and Greater Manchester NIHR Clinical Research Networks.This is the final version of the article. It first appeared from Springer via http://dx.doi.org/10.1007/s00213-016-4245-

Violence-related ambulance call-outs in the North West of England: a cross-sectional analysis of nature, extent and relationships to temporal, celebratory and sporting events.

OBJECTIVE: The aim of this study was to explore the potential of ambulance call-out data in understanding violence to inform about prevention activity. METHOD: This cross-sectional (2013-2015) study examined the nature, extent and characteristics of violence-related ambulance call-outs (n=15 687) across North West England and relationships with temporal, celebratory and sporting events. RESULTS: The majority of call-outs were for men, with a mean age of 33 years. Most call-outs were to deprived (64.4%) and urban (65.4%) areas and occurred at night (18:00-5:59; 75.2%). Three-quarters (77.3%) were recorded as assault/sexual assault and 22.7% stab/gunshot/penetrating trauma. Significant differences in call-out characteristics were identified between the two violence types. Generalised linear modelling found that call-outs significantly increased on weekends, New Year's Eve and weekday bank holiday eves (except for stab/gunshot/penetrating trauma). No significant associations between all violence call-outs, the two violence categories and sporting or celebration events were identified. Two-thirds (66.1%) of the call-outs were transferred to another health service for further assessment and/or treatment. The odds of being transferred were significantly higher among men (adjusted OR (AOR) 1.5, 95%CI 1.4 to 1.6), those aged 13-24 years (AOR 1.2, 95%CI 1.0 to 1.4), call-outs for stab/gunshot/penetrating trauma (AOR 1.4, 95%CI 1.3 to 1.5) and call-outs on Fridays/Saturdays (AOR 1.1, 95%CI 1.0 to 1.2) and lower for call-outs on New Year's Eve (AOR 0.6, 95%CI 0.4 to 0.9). CONCLUSION: Ambulance call-out data can provide a wealth of information to understand violence and subsequently inform about violence prevention and response activity. Ambulance services and staff could play a key role in preventing violence through sharing data and identifying and supporting victims