Self-perceived stigma in young people with sickle cell disease: associations with psychosocial distress

Background: Sickle cell disorders (SCD) are serious genetic blood conditions affecting mainly people of Black African origin. The disease is associated with serious physical complications and some affected persons have increased psychological difficulties. Self-perceived stigma is a putative risk factor for psychological distress in SCD but this had not been studied. Aim: The primary aim is to estimate the prevalence of self-perceived stigma in young people with SCD and to explore its associations with psychosocial and illness variables. A secondary aim is to explore associations of other measures of psychological adjustment with illness and social indicators. Methodology: Cross-sectional questionnaire survey of 93 young people with SCD aged 10-19 years (Mean 14 years). Questions on self-perceived distancing by others were used to assess stigma. Psychological difficulty was assessed with self-report Strengths and Difficulties Questionnaire (SDQ), Depressive symptoms were measured with the Short Mood and Feelings Questionnaire, self-esteem was assessed with the Rosenberg Self-Esteem Scale, and Family function was measured with the Family Assessment Device. Results: The respondents were evenly split in gender and almost all were of Black ethnicity (95%). However, they had better socioeconomic profile compared with average black families in the UK. Only 15% had self-perceived stigma. Consistent with stigma theory, frequent ward admissions (i.e. measure of disruptiveness) and presence of leg ulcer (i.e. measure of visibility) predicted more self-perceived stigma. Self-perceived stigma in turn predicted more psychological difficulty (Total SDQ score). Psychological symptoms were also associated with poor attitudes towards SCD, and by problematic family function. Conclusion: To my knowledge, this is the first study to show that stigma theory applies to SCD and that self-perceived stigma is a significant predictor of psychological difficulty in this disorder. Thus, alleviating stigma could benefit psychological well-being in SCD

A postgraduate training programme in child and adolescent mental health in a lower-middle-income country: a partnership model from Nigeria

This paper describes a postgraduate training programme in child and adolescent mental health (CAMH) in Nigeria. It explains the background, curriculum development, teaching, evaluation and outcomes. By its 10th year the programme had trained 166 CAMH professionals from 14 African countries. Many of the graduates are running clinical CAMH services in their countries, mostly pioneered by them. They are also conducting CAMH training, including as faculty on the programme, and some are in international CAMH leadership roles. Key success elements of the programme that can be replicated in other low- and middle-income countries include international partnership, adopting a train-the-trainer approach, using a curriculum that covers clinical aspects of CAMH while also developing leadership and research skills, use of free-access training resources, and access to seed funding

Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance study

Background Optimal transition from child to adult services involves continuity, joint care, planning meetings and information transfer; commissioners and service providers therefore need data on how many people require that service. Although attention-deficit hyperactivity disorder (ADHD) frequently persists into adulthood, evidence is limited on these transitions. Aims To estimate the national incidence of young people taking medication for ADHD that require and complete transition, and to describe the proportion that experienced optimal transition. Method Surveillance over 12 months using the British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System, including baseline notification and follow-up questionnaires. Results Questionnaire response was 79% at baseline and 82% at follow-up. For those aged 17-19, incident rate (range adjusted for non-response) of transition need was 202-511 per 100 000 people aged 17-19 per year, with successful transition of 38-96 per 100 000 people aged 17-19 per year. Eligible young people with ADHD were mostly male (77%) with a comorbid condition (62%). Half were referred to specialist adult ADHD and 25% to general adult mental health services; 64% had referral accepted but only 22% attended a first appointment. Only 6% met optimal transition criteria. Conclusions As inclusion criteria required participants to be on medication, these estimates represent the lower limit of the transition need. Two critical points were apparent: referral acceptance and first appointment attendance. The low rate of successful transition and limited guideline adherence indicates significant need for commissioners and service providers to improve service transition experiences

The transition from children's services to adult services for young people with attention deficit hyperactivity disorder : the CATCh-uS mixed-methods study

This is the final version. Available on open access from the NIHR Journals Library via the DOI in this recordADHD was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support ADHD patients who become too old for child services. This is the first in-depth study of the transition of ADHD patients from child to adult health services in the UK. Our objectives were to explore: o how many young people with ADHD are in need of services as an adult o what adult ADHD services are available o how ADHD stakeholders experience transition from child to adult services Design An interactive mixed method design was adopted with three study streams; (1) a twelve-month surveillance study with nine month follow-up to find out how many young people required ongoing medication when too old for child services (929 surveys completed by child clinicians); (2) a mapping study to identify and describe services for young adults with ADHD (2,686 respondents to online surveys for patients and health workers and Freedom of Information requests to service providers and commissioners); and (3) a qualitative study to explore key stakeholder experience of transition from child to adult services (144 interviews with 64 ADHD patients, 28 parents, 52 clinicians working in child or adult secondary health services and 14 general practitioners). Members of the public advised each stage of the study. Results Corrected for non-response and case ascertainment, the annual incidence of young people with an ongoing need for medication for ADHD lies between 270 and 599 per 100,000 people aged 17 – 19 years. Of 315 eligible cases for transition, 64% of referrals were accepted but only 22% attended their first adult services appointment. Our interactive map describes 294 unique services for adults with ADHD across the UK; 44 were ‘dedicated’ ADHD services (defined chapter 4). Few services provide the full range of recommended provision, most focused on diagnosis and medication. They were unevenly distributed across the UK, with nearly all ‘dedicated’ services in England. Exploring stakeholders’ experiences revealed how invested they are in continuing ADHD treatment and the architecture of services impacted transition. An association between ADHD, education and continuance of medication into young adulthood, plus parent involvement and feeling prepared for transition and adult life with ADHD, influenced investment. However, even if invested; how accessible adult services were; how patient needs fitted with the remit of the adult service; and the level of patient information available impacted transition outcomes. The results also highlighted how GPs can end up as care-coordinator during transition by default. Limitations Transition estimates were based on those who want medication, so indicate a minimum level of need. Conclusions Few of those who need ongoing support for their ADHD successfully transfer to adult services, and a small proportion of those who transfer experience optimal transitional care. Adult ADHD service provision is patchy. Even among ‘dedicated’ services, few provide the whole range of NICE recommended treatments. Future Work We a need to evaluate various models of transitional care and adult ADHD provision, as well as develop and evaluate psycho-social interventions for young people and adults with ADHD. Funding The National Institute for Health Research - Health Services and Delivery Research Programme.National Institute for Health Research (NIHR)Note the change of title. The title of the author accepted manuscript (and the original title of this record) was "Young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children's services to adult services (CATCh-uS): a mixed methods national scoping study

The emotional and mental health needs of young carers: what psychiatry can do.

Aims and Method: To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognised and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria. Results: The key findings were that young caregivers had a significantly higher dose-response mortality risk than their peers; were at increased risk of mental health difficulties, especially where the ill family member was a parent and had mental illness or misused substances; were overlooked by professionals owing to a lack of awareness; but could derive benefits from their caring role when appropriately supported. Clinical Implications: Young carers are at increased risk regarding emotional and mental health needs; this risk could be mitigated by professionals recognising the young carer's role and including them in their parent's treatment plan

Self-perceived stigma in young people with sickle cell disease : associations with psychosocial distress

Background: Sickle cell disorders (SCD) are serious genetic blood conditions affecting mainly people of Black African origin. The disease is associated with serious physical complications and some affected persons have increased psychological difficulties. Self-perceived stigma is a putative risk factor for psychological distress in SCD but this had not been studied. Aim: The primary aim is to estimate the prevalence of self-perceived stigma in young people with SCD and to explore its associations with psychosocial and illness variables. A secondary aim is to explore associations of other measures of psychological adjustment with illness and social indicators. Methodology: Cross-sectional questionnaire survey of 93 young people with SCD aged 10-19 years (Mean 14 years). Questions on self-perceived distancing by others were used to assess stigma. Psychological difficulty was assessed with self-report Strengths and Difficulties Questionnaire (SDQ), Depressive symptoms were measured with the Short Mood and Feelings Questionnaire, self-esteem was assessed with the Rosenberg Self-Esteem Scale, and Family function was measured with the Family Assessment Device. Results: The respondents were evenly split in gender and almost all were of Black ethnicity (95%). However, they had better socioeconomic profile compared with average black families in the UK. Only 15% had self-perceived stigma. Consistent with stigma theory, frequent ward admissions (i.e. measure of disruptiveness) and presence of leg ulcer (i.e. measure of visibility) predicted more self-perceived stigma. Self-perceived stigma in turn predicted more psychological difficulty (Total SDQ score). Psychological symptoms were also associated with poor attitudes towards SCD, and by problematic family function. Conclusion: To my knowledge, this is the first study to show that stigma theory applies to SCD and that self-perceived stigma is a significant predictor of psychological difficulty in this disorder. Thus, alleviating stigma could benefit psychological well-being in SCD.EThOS - Electronic Theses Online ServiceSir Jules Thorn FoundationGBUnited Kingdo

Involvement of community paediatricians in the care of children and young people with mental health difficulties in the UK: implications for case ascertainment by child and adolescent psychiatric, and paediatric surveillance systems

Objective To ascertain the extent to which community paediatricians are involved in the care of children with mental health conditions in order to determine which difficulties are appropriate for single or joint surveillance by the British Paediatric Surveillance Unit (BPSU) and Child and Adolescent Psychiatry Surveillance System (CAPSS).Design An online survey of the 1120 members of the British Association of Community Child Health (BACCH) working in 169 Community Child Health (CCH) services in the UK.Results A total of 245 community paediatricians responded to the survey. This represents 22% of members of BACCH but likely to have covered many of the 169 CCH units because participants could respond on behalf of other members in their unit. The survey showed that children and young people (CYP) with neurodevelopmental conditions presented more frequently to paediatrics than to Child and Adolescent Mental Health Services (CAMHS). In addition, a sizeable proportion of CYP with emotional difficulties presented to paediatricians (eg, 29.5% for anxiety/obsessive compulsive disorder (OCD), and 12.8% for depression)—mainly due to difficulty with accessing CAMHS. More than half of the community paediatricians are involved in the care of CYP with anxiety and OCD, while 32.3% are involved in the care of those with depression.Conclusion There is significant involvement of community paediatricians in the care of CYP with mental health conditions. Involvement is highest for neurodevelopmental conditions, but also significant for CYP with emotional difficulties. The implication of the findings for surveillance case ascertainment is that joint BPSU and CAPSS is recommended for surveillance studies of neurodevelopmental conditions. However, for emotional disorders, single or joint surveillance should be made based on the specific research question and the relative trade-offs between case ascertainment, and the additional cost and reporting burden of joint surveillance. Single CAPSS studies remain appropriate for psychosis and bipolar disorder