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BackgroundThose bereaved by suicide are a high-risk group of adverse health outcomes and suicidal behavior, yet little is known about the experiences and support needs of these individuals in the UK.MethodsWe conducted a national cross-sectional study using an online survey and analyzed the experiences of 7158 participants who had been bereaved or affected by suicide.ResultsSuicide had a major impact on 77% of participants, including those who had lost a friend and those exposed to suicide at a professional level. Mental and physical health problems linked to the suicide were reported in half. Adverse social outcomes and engaging in high-risk behaviors following the suicide were common. Over a third reported suicidal ideation and 8% had attempted suicide as a direct result of the suicide loss. Most had not accessed support services, with the majority viewing provision of local suicide bereavement support as inadequate.ConclusionsOur results highlight the need for a multi-disciplinary approach in postvention and the provision of proactive outreach to support those bereaved by suicide. Postvention efforts need to acknowledge the death of a friend by suicide as a significant loss.

Abstract. Background: Health-care professionals do not routinely receive training on how best to support parents bereaved by suicide. Evidence-based training – Postvention Assisting Those Bereaved by Suicide (PABBS) – was designed to address this gap. Aims: The study aimed (a) to pilot PABBS training and evaluate its perceived effectiveness (impact on self-reported knowledge, skills and confidence) in managing suicide bereavement; and (b) to explore training acceptability. Method: A pre- and postevaluation design was used. Professionals attended intensive, structured 1-day PABBS training comprising: didactic/interactive teaching; practice-orientated activities supported with real-life materials and a manual/workbook. Evaluation forms completed immediately before and after training analyzed: (a) self-reported changes in knowledge, skills, and confidence (perceived effectiveness of training); and (b) the acceptability of training. Results: In total, 62 professionals completed training. Perceived knowledge, skills, and confidence improved after training as did self-reported understanding, motivation to learn more, and intention to change practice. Training was highly rated, particularly the evidence-based, real-life materials, with some suggestions for improvement. Limitations: Self-selected sample and reliance on self-report measures are the study's limitations. Conclusion: PABBS training may help address gaps in professionals' capacity to support parents bereaved by suicide. The evidence-based content was highly acceptable and appeared to be a key ingredient in effecting self-reported changes in attitudes/intentions.

Achondroplasia, the most common skeletal dysplasia, is characterized by a variety of medical, functional and psychosocial challenges across the lifespan. The condition is caused by a common, recurring, gain-of-function mutation in FGFR3, the gene that encodes fibroblast growth factor receptor 3. This mutation leads to impaired endochondral ossification of the human skeleton. The clinical and radiographic hallmarks of achondroplasia make accurate diagnosis possible in most patients. However, marked variability exists in the clinical care pathways and protocols practised by clinicians who manage children and adults with this condition. A group of 55 international experts from 16 countries and 5 continents have developed consensus statements and recommendations that aim to capture the key challenges and optimal management of achondroplasia across each major life stage and sub-specialty area, using a modified Delphi process. The primary purpose of this first International Consensus Statement is to facilitate the improvement and standardization of care for children and adults with achondroplasia worldwide in order to optimize their clinical outcomes and quality of life. Achondroplasia is the most common skeletal dysplasia and is characterized by various lifelong clinical, functional and psychosocial challenges for affected individuals. This first International Consensus Statement on the care of children and adults with achondroplasia aims to facilitate the global standardization and improvement of achondroplasia clinical care.

It is estimated that between 36,000 and 360,000 people are affected by suicide every year in the UK, and a proportion may develop depression and post-traumatic stress disorder, or engage in high-risk behaviours. Recent systematic analyses have revealed a clear gap in research on suicide bereavement in minority ethnic groups. This study aimed to understand the experiences and support needs of individuals from ethnic minority backgrounds bereaved by suicide and was the first in the UK to investigate this matter. The study was a secondary analysis of data. Participants were 7158 people residing in the UK who completed an online survey about their experiences of suicide. Free-text qualitative responses of 227 participants who did not identify as White British were analysed using thematic analysis. Four themes were identified: maladaptive coping strategies, emotional processes following suicide, lack of support from agencies, and the importance of mental health awareness. Ethnic minority groups reported a lack of support despite attempts to engage with services, noted the prevalence of stigma within ethnic minority groups, and expressed a need to tackle this. These preliminary results suggest that ethnic minority individuals require visible and accessible services that can successfully engage with and support them.

BackgroundPeople bereaved by suicide are a vulnerable group, also at risk of dying by suicide. The importance of postvention support (intervention after suicide) has recently been highlighted; however, little is known about the support needs of parents bereaved by suicide in the UK, and the role played by general practice.AimTo explore the perspectives, experiences, and support needs of parents bereaved by suicide.Design and settingThis was a qualitative study, with semi-structured interviews conducted between 2012 and 2014 in the north of England and the Midlands, with parents bereaved by their son or daughter’s suicide.MethodInterviews explored parents’ experiences of suicide bereavement following the death of their son or daughter, with a focus on their experiences of support from primary care. Interviews were analysed thematically using constant comparison.ResultsTwenty-three interviews were conducted. Three themes were identified from the data: the importance of not feeling alone; perceived barriers to accessing support; and the need for signposting for additional support. Some parents reported having experienced good support from their general practice; others described a number of barriers to accessing help, including triage processes. Primary care was considered to be an important avenue of support but GPs were often perceived as uncertain how to respond. The need for information, signposting to avenues of support, and the helpfulness of group support were also highlighted.ConclusionParents believed it was important that people working in general practice have an awareness of suicide bereavement and understanding of their needs, including knowledge of where to direct people for further support.

During the 2014–2016 Ebola outbreak, health services in Liberia collapsed. Health care facilities could not support effective infection prevention and control (IPC) practices to prevent Ebola virus disease (EVD) transmission necessitating their closure. This report describes the process by which health services and infrastructure were recovered in the public hospital in Monrovia, Liberia. The authors conducted an assessment of the existing capacity for health care provision, including qualitative interviews with community members, record reviews in Ebola treatment units, and phone calls to health facilities. Assessment information was used to determine necessary actions to re-establish services, including building and environmental renovations, acquiring IPC supplies, changing health care practices, hiring additional staff, developing and using an EVD screening tool, and implementing psychosocial supports. On-site monitoring was continued for 2 years to assess what changes were sustained. Described in the report are 2 cases that highlight the challenge of safely re-establishing services with only a symptom-based screening tool and no laboratory tests available on-site. Despite fears among the public, health workers, and the international community, the actions taken enabled basic health care services to be provided during EVD transmission and led to sustainable improvements. This experience suggests that providing routine medical needs helps limit the morbidity and mortality during times of disease outbreak. (Disaster Med Public Health Preparedness. 2018;13:767–773)

Objectives: International suicide prevention strategies recommend providing support to families bereaved by suicide. The study objectives were to measure the proportion of cases in which psychiatric professionals contact next of kinafter a patient’s suicide and to investigate whether specific, potentially stigmatizing patient characteristics influence whether the family is contacted.Methods: Annual survey data from England and Wales (2003–2012) were used to identify 11,572 suicide cases among psychiatric patients. Multivariate regression analysis was used to describe the association between specific covariates (chosen on the basis of clinical judgment and the published literature) and the probability that psychiatric staff would contact bereaved relatives of the deceased.Results: Relatives were not contacted after the death in 33% of cases. Contrary to the hypothesis, a violent method of suicide was independently associated with greater likelihood of contact with relatives (adjusted odds ratio=1.67). Four patient factors (forensic history, unemployment, and primary diagnosis of alcohol or drug dependence ormisuse) were independently associated with less likelihood of contact with relatives. Patients’ race-ethnicity and recent alcohol or drug misuse were not associated with contact with relatives.Conclusions: Four stigmatizing patient-related factors reduced the likelihood of contacting next of kin after patient suicide, suggesting inequitable access to support after a potentially traumatic bereavement. Given the association ofsuicide bereavement with suicide attempt, and the possibility of relatives’ shared risk factors for suicide, British psychiatric services should provide more support to relatives after patient suicide.

International audience; OBJECTIVE: There is controversy about the clinical consequences of intermediate alleles (IAs) in Huntington disease (HD). The main objective of this study was to establish the clinical manifestations of IA carriers for a prospective, international, European HD registry.METHODS: We assessed a cohort of participants at risk with RESULTS: Of 12,190 participants, 657 (5.38%) with CONCLUSIONS: Although aging worsened the UHDRS scores independently of the genetic status, IAs might confer a late-onset abnormal motor and cognitive phenotype. These results might have important implications for genetic counseling.CLINICALTRIALSGOV IDENTIFIER: NCT01590589.

Ex-armed forces personnel constitute the largest known occupational group in prison but there is little evidence regarding their mental health, or substance misuse, needs. A total of 105 participants were interviewed and measures assessing symptoms of common mental health (CMH) problems and substance misuse were completed along with a review of their health care records. Forty (38%) participants screened for current CMH problems (CCMH) and high levels of dual symptomology and alcohol misuse were assessed. Thirty-nine (37%) had a mental health diagnosis recorded, most commonly for post-traumatic stress disorder (PTSD), depression and personality disorder. Those who screened for a CCMH problem were more likely to have pre-service vulnerability to negative health outcomes and those with dual symptomology were more likely to have experienced deployment during their service. Findings suggest the mental health needs of this group are similar to the general prison population. Potentially higher prevalences of PTSD and alcohol misuse may direct service provision.

Ex-armed forces personnel represent a potentially vulnerable group within the prison population. To provide support to this group, we need to understand their needs and help-seeking behavior. A focus group with professionals and semi-structured interviews with service users explored perspectives of the treatment barriers faced by this group and their support needs. Data were analyzed using constant comparison methods, and four primary themes were identified. The findings suggest ex-armed forces personnel consider prison an opportunity to access support but find it difficult to ask for help. Staff having an awareness of military issues was thought to encourage help-seeking, but the variability of provision across prison establishments was considered a barrier. Resettlement was a prominent concern, and access to support when preparing for, and after, release was felt by all participants to be important. Implications for the provision of support in prison are discussed along with recommendations for practice.

Background:Suicide prevention is an NHS priority in England. Bereavement by suicide is a risk factor for suicide, but the needs of those bereaved by suicide have not been addressed, and little is known about how GPs support these patients, and how they deal with this aspect of their work.Aims:This study explores the experiences of GPs dealing with parents bereaved by suicide. Design and setting:Qualitative study: interviews with 13 GPs in the UK.Methods:Parents, whose adult offspring had died by suicide between 2002 and 2012, were recruited and gave the name of their GP to be invited for interview. Semi-structured interviews were conducted. The topic guide explored experiences of dealing with suicide and bereavement. Data were analysed thematically using constant comparison techniques.Results:GPs described mental health as ‘part and parcel’ of primary care, but disclosed low confidence in dealing with suicide and an unpreparedness to face parents bereaved by suicide. Some GPs described guilt surrounding the suicide, and a reluctance to initiate contact with the bereaved parents. GPs talked of their duty to care for the bereaved patients, but admitted difficulties in knowing what to do, particularly in the perceived absence of other services. GPs reflected on the impact of the suicide on themselves and described a lack of support or supervision.Conclusions:GPs need to feel confident and competent to support parents bereaved by suicide. Whilst this may be facilitated through training initiatives, and accessible services to refer parents to, GPs also require formal support and supervision, particularly around significant events such as suicide. Results from this qualitative study have informed the development of suicide bereavement training for primary care professionals.

Offenders with mental health problems often have complex and interrelated needs which separately challenge the criminal justice system (CJS) and National Health Service (NHS) in the United Kingdom (U.K.). Consequently, interagency collaboration and timely information sharing are essential. This study focused on the sharing of information about people with mental health problems in contact with the CJS. Questionnaires were distributed to a range of health and criminal justice personnel. The results showed that there was a mismatch between what service user information criminal justice agencies felt they needed and what was routinely received. Prison Service staff received more information (between 15% and 37%) from health agencies than the police (between 6% and 22%). Health professionals received most of the information they needed from criminal justice agencies (between 55% and 85%). Sharing service user information was impeded by incompatible computer systems and restrictions due to data protection/confidentiality requirements. In the U.K., recent governmental publications have highlighted the importance of information sharing; however there remains a clear mismatch between what health related information about service users criminal justice agencies need, and what is actually received. Better guidance is required to encourage and empower people to share.

Little is known about why some ex-armed forces personnel become involved in the criminal justice system, however, they represent the largest known occupational group in prison. In-depth interviews were employed to explore possible pathways to offending. Twenty ex-armed forces personnel in prison were recruited from five prisons in England. Data were analysed using a combination of thematic analysis and constant comparison methods rooted in grounded theory. Four predominant themes were identified: experiences of trauma and adversity; belonging; impulsivity and creating a soldier. Participants had experienced a number of traumatic incidents and adversity in their lives, encompassing pre, during and post-service but felt a sense of belonging in the armed forces. Participants demonstrated impulsivity in a number of areas with links to both their service in the armed forces and offending behaviour. The creation of the identity of ‘soldier’ was perceived to impact participants’ lives in a number of ways, including their offending, alcohol use and coping with trauma. The interplay of these themes and their potential impact on participants’ pathways to offending are discussed.

Purpose: Investigated the facial emotion decoding and encoding skills and perceived social acceptance in children with and without oral clefts. Patients: 8–15 year-old children with surgically repaired facial clefts ( n =19) and non-cleft controls ( n =19). Methods: The children viewed photographs of facial emotions expressed by other children and identified the emotion in each photograph. They were videotaped while listening to a series of brief vignettes designed to evoke facial emotions and while posing prototypic facial expressions. They also completed a measure of their perceived social acceptance. Judges, blind to experimental group and targeted emotion, viewed systematically sampled video images, then recorded their subjective judgement of the emotion expressed in each. Trained coders also scored selected images using objective measures of the degree to which specific facial movements associated with emotion-specified expressions were present. Results: Analysis of variance procedures detected significantly different patterns of facial responses between the oral cleft and control groups, and within group. Pearson correlation analyses found significant relationships between specific facial movements and perceived social acceptance. Conclusion: Systematic assessment of facial expression in children with oral clefts can identify unique differences in their encoding of facial emotion and may lead to behavioural interventions to improve social functioning by training facial expression skills.

This study investigated relationships between child/parent dissatisfaction with child facial appearance and the self-concept/social competence of 8- to 15-year-old children with (N = 34) and without (N = 34) oral clefts. Children in both groups had normative psychosocial adjustment, but also reported moderate dissatisfaction with facial appearance. Cleft group parents were more likely to agree with their child's dissatisfaction. When cleft group parents were more dissatisfied with child facial appearance, their children reported better quality of life. Results suggest that parents of children with clefts reporting greater dissatisfaction may respond in positive ways that enhance quality of life.

This is the eighth article in a series looking at how nurses can develop competence in genetics and genomics health care. The article explores the many ways in which nurses can acquire up to date and accurate genetic and genomic information, with the intention of improving their knowledge base. It enables nurses to discover the best ways of giving specific and complex information to patients and colleagues effectively and using straightforward language.

Objective To examine the social interaction patterns of children with and without oral clefts. Design Participants were videotaped while interacting with a peer confederate. Oral cleft and control groups were compared on social behavior and several self- and parent-report measures. Participants Thirty-four 8- to 15-year-olds with oral clefts, matched for sex, age, and socioeconomic status with 34 noncleft controls. Main Outcome Measures Data were obtained on social behaviors coded from videotapes and on child and parent ratings of social acceptance/competence and facial appearance. Results Statistically significant differences were found between groups: children with clefts made fewer choices and more often failed to respond to peer questions; children with clefts and their parents reported greater dissatisfaction with the child's facial appearance; and parents of children with clefts rated them as less socially competent. Significant within-group associations were also found. Parent perception of child social competence and child self-perception of social acceptance were positively correlated for both groups. Children with clefts who felt more socially accepted more often looked a peer in the face. Controls who felt more socially accepted chose an activity less often during the social encounter. Conclusions Differing patterns of overt social behavior as well as parent and self-perception can be measured between children with and without oral clefts. Such results may be helpful in developing interventions to enhance social skills and parent/child adjustment.

Support groups provide information and emotional support to families. Despite a recent growth in the number and size of these groups, there are no formal structures in place to provide support for the support worker. We performed a cross-sectional survey using a self-completion postal questionnaire, with the aim of identifying the structure, training needs and support given to workers. The participants were support workers from 112 United Kingdom-based organisations listed on the 'Contact a Family' website (www.cafamily.co.uk). We received 104 replies from 50/112 organisations (44%). Of these, 94/104 (90%) worked from home as volunteers. Two-thirds, 69/104, admitted times when they struggled to cope. A total of 43 (41%) admitted occasions of concern over the care given by a client to their affected relative. No group employed a professional to act in a clinical supervisory role. Our study suggests that support workers are highly committed to their role; these workers need support to ensure that they give appropriate advice under difficult circumstances.

The flash and pattern electroretinogram were investigated in a group of families with rare forms of inherited macular dystrophy, which included Sorsby's fundus dystrophy, X-linked retinoschisis and macular dystrophy of uncertain classification and variable expression. Flash electroretinograms, under both photopic and scotopic conditions, were attenuated in both Sorsby's fundus dystrophy and X-linked retinoschisis--with some effect on implicit time being noted in the latter condition--but in the unknown group the effect was less demonstrable, only 50% having attenuated flash electroretinograms. Pattern electroretinograms were reduced in all three conditions and in almost all cases. The study demonstrates that some so-called macular dystrophies also have widespread abnormalities affecting the peripheral retina. These findings may contribute to a better understanding of the underlying pathophysiologic mechanisms in these rare forms of retinal dysfunction.

The HIV/AIDS pandemic continues to gather momentum in many developing countries, increasing the already heavy burden on health care facilities. As a result, donors, implementing partners and communities are beginning to create home-based care programmes to provide care for persons with HIV/AIDS. This paper recommends reorienting this home care provision as a service founded in, and coming from, the community rather than the health system. A methodology, in the form of an assessment matrix, is provided to facilitate the assessment of a community's capacity to provide care for people with AIDS. The focus is on rapid assessment methods using, where possible, readily available information to clearly and systematically define current circumstances. The matrix created for a specific community is then used in the development of an action plan with interventions prioritized and tailored to local needs. A case study from a hypothetical developing country, where HIV/AIDS is a significant problem, is used to illustrate the process.Any AIDS program should strive to strengthen the capacity of the home and community to care for people with AIDS by building on traditional family structures which support all chronically ill people. A rapid assessment tool has been developed to resolve potential conflicts and to facilitate the design of an AIDS program tailored to local needs. It was designed with developing countries in mind. It uses an assessment matrix for systematic community evaluation of the problems and resources with current home care. The 3 levels are individual, household, and community. The key categories are HIV prevalence and awareness, perceived needs, community capability, and health and social system. For example, community capability and its operation are examined at the individual, household, and community level. Each country or program must come up with its own process and outcome indicators. They should choose indicators based on data that will always be available and permit measurement of progress towards selected goals/objectives (e.g., percentage of HIV seropositive TB patients). After completion and review of the matrix, the strengths, weaknesses, and barriers (which will become apparent) are used to develop an action plan. There are general guidelines for data analysis and the development of the action plan. Every program should be area-specific and community-based. Neither donors nor implementers should misjudge the obstacles to care within the community. Incremental steps will result in improved capacity of the community to cope with people with AIDS. All people who are involved in home care (e.g., prostitutes) must be included in the team to evaluate home care. Outside help (e.g., donors) must not undermine community initiatives to care for members with AIDS. The information and conclusions should be presented to the community and key informants for verification before implementing any interventions.