Psychiatrists’ views on pharmacology use for aggression in under 18s: a qualitative study

BackgroundThere are few identified risk factors that may contribute to the increased risk of hospital admission for children and young people with intellectual disabilities. This qualitative study aimed to identify the key risk factors that precipitate admissions to Tier 4 child and adolescent mental health services (CAMHS) inpatient services for young people with an intellectual disability living in the North East of England in accordance with the Transforming Care programme.MethodsThis qualitative study captures the narrative of five young people admitted to hospital following a crisis period. Semi‐structured interviews were carried out with two adolescents with an intellectual disability and five caregivers of a young person with an intellectual disability to identify challenges from those with lived experience.FindingsThe findings were analysed using interpretative phenomenological analysis and indicated pathological, interpersonal, social, education and intervention challenges. Nine re‐emerging central themes highlighted that young people experienced particular difficulties before admission such as behaviours which challenge, comorbid diagnoses, isolation, insufficient crisis planning, care coordination problems, familial stressors, availability of community service provision, school placements and late intervention.ConclusionsThese results have contributed to developing the children's Tier 4 CAMHS Learning Disability pathways within a large NHS Foundation Trust as practitioners and professionals are mindful of these areas exacerbating risks and challenges that a young person with an intellectual disability and their family may experience. Findings could be considered when nationally reviewing services following the Transforming Care programme, aiming to provide care as close to home as possible. This may contribute to future research developing “At Risk” screening tools and formal “At Risk” registers for those with an intellectual disability.

Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.

Background: The transition from school to adult life is challenging for young people with intellectual disability. The study aimed to explore how young people with intellectual disability themselves experience the transition from school to adult life. Methods: A co-designed, qualitative study. Thematic data analysis of qualitative survey responses, semi-structured interviews, and focus groups with 27 young people with intellectual disability in three Australian states. Results: Participants found transition planning at school inconsistent or lacking and felt excluded from decision-making about their lives. Accessing meaningful services, training, and employment beyond volunteering was challenging and enduring, leaving participants in perpetual state of transition, feeling lost, and missing out of post-school adult milestones. Conclusions: Policy, system, and service gaps must be addressed with a nationally consistent and accountable approach that truly supports choice and control for young people with intellectual disability in transitioning from school into meaningful adult lives.

This study aim to examine parents’ and professionals’ views on the usage of Internet for love and sexual purposes among young people with intellectual disabilities (18–20 years) in Sweden. Five semi-structured focus group interviews were conducted with professionals (n = 8) working on special programmes in upper secondary schools and with parents (n = 5). The interviews were analysed with thematic analysis and the theory of sexual scripts were guiding the process. The results show that the Internet is seen as a social arena with complex challenges; for love and sexuality, for sexual conduct, and for sexual risk and opportunities. Young people with intellectual disabilities are looked upon as more vulnerable than other youth. However, the result also show that parents view the risk of their adolescent of being lonely as greater than the risk of being abused or mislead. A Net-script consisting of rules is geared towards the young people with intellectual disability. Nevertheless, a change to a more flexible and nuanced Net-script is shown while the group of young persons with intellectual disabilities are seen as more heterogeneous than earlier. In-depth knowledge about parents’ and professionals’ perspectives on the Internet and sexuality is important since the young people live in a dependency situation towards their surroundings. In addition, the surroundings’ attitudes and behaviour are essential for the young peoples’ access of support and opportunities to develop their own capacity and to experience love and sexuality.

Co-design and delivery of a relational learning programme for nursing students and young people with severe and complex learning disabilities

Background Globally the energy drinks industry is thriving, with sales estimated to be over $12.5 billion in 2012. These drinks generally contain high levels of caffeine and sugar and are promoted as giving the consumer more ‘energy’ than other soft drinks. Around one in three young people under 18 report regular consumption of energy drinks, but little research has been undertaken with this population to explore their use of these drinks. This study aims to investigate what motivates children and young people to consume energy drinks and what effects they are perceived to produce, in order to inform the development of tailored resources and interventions. Methods Focus groups are underway with pupils (aged 10–11 and 13–14 years) from primary and secondary schools in North East England. Semi-structured interviews are also being undertaken with school staff and parents. All data are being transcribed verbatim and analysed using the constant comparative approach. Preliminary analyses and possible intervention options will be discussed with key stakeholders, including children and families, at one or more participatory workshops. Results To date, six focus groups with pupils (n = 27) and interviews with eight school staff have been conducted. Emerging themes include the role of branding and marketing on young people’s choices, in addition to the influence of parents, siblings and peers. The data highlight similarities and differences between the children and young people’s views and those of the adult participants, as well as gender and age differences amongst the young people. There is heterogeneity in the motivations, perceived benefits and risks, and the health and behavioural effects associated with energy drink consumption. Suggestions have been put forward by participants to address these issues, and subsequent discussions will consider how these might work, and for whom. Discussion Although data collection is ongoing, a number of important issues have already begun to emerge. These include the ease of access to energy drinks for under 18s, their awareness of the contents of these drinks, and the role of social norms in their decision to either consume or abstain. Given that this is the first in-depth UK-based study on this topic and, to our knowledge, the first study on energy drinks to involve younger children, we are confident that it will continue to generate findings of interest to diverse academic, practitioner and lay audiences.

People with intellectual disability want friendships and meaningful relationships, and some want intimacy. However, the expression of sexuality is an area where potential freedoms are often limited and restricted compared to their peers. While some relationships and sexuality education programmes do exist for this population, most focus on knowledge acquisition regarding sexuality and sex but lack in their focus on relationships, informed choices and decision-making. The aim of this study was to identify good practices and methods of delivery in relationships and sexuality education for children and young people with intellectual disability. A qualitative design was undertaken. Information about our study was distributed to eight special schools in the UK. Semi-structured interviews and focus groups were employed for data collection. Data from 37 pupils with intellectual disability, 11 parents and 16 healthcare and other professionals were thematically analysed. Following data analysis, three themes emerged: (i) seeking and sharing information; (ii) protecting and keeping safe; and (iii) learning for the future. The findings highlight that pupils are keen to learn about life changes and societal influences and want reliable information. Parents and professionals recognise that children and young people with intellectual disability will develop into adults and may be vulnerable when they leave the security of the school setting. They recognise that children and young people need to know about socialising, puberty, consent and contraception. Evidence-based programmes should be designed with these stakeholders to ensure children and young people with intellectual disability receive developmentally appropriate information to make happy and safe decisions about their relationships.

The person-centred review (PCR) is a model for the review of a young person’s special educational needs (SEN), advocated for use at transition. The young person and their family are placed at the centre of the process, which adopts principles relating to humanistic and positive psychology, and utilises visual strategies for information sharing and planning. This exploratory study investigated the views of 16 students with SEN, and their parents/carers. A mixed-methods design was employed. The views of the participants were gathered through semi-structured interviews as the dominant qualitative method. A thematic analysis was conducted separately for parents and young people. Quantitative data were gathered from the young people before and after their PCR to explore changes in the young people’s locus of control, feelings of positivity towards school and motivation. The findings indicate that the PCR is a constructive and reassuring process for parents and young people. Parents shared views on the wealth of detailed information shared openly and honestly within a relaxed and informal, yet organised and structured process. Parents and young people felt they had contributed to the process as equal partners, feeling their voices were heard. Child-friendly strategies ensured the young people could access the meeting, although some parents felt that the meeting was too long and parts were not understood by the child. The young people were generally positive about the process, although many felt daunted beforehand, possibly due to a lack of preparation. No change was found in the young people’s locus of control or feelings of motivation. Many young people indicated higher ratings of positivity towards school following the PCR. Implications for schools and education professionals are outlined, highlighting the role of the Educational Psychologist in facilitating PCRs, delivering facilitator training, and promoting meaningful pupil and parent participation.

Health and wellbeing during transition to adulthood for young people with intellectual disabilities: A qualitative study

Introduction Recent evidence has shown that the incidence of long-term illnesses in young people is increasing (1). Pharmacists, as medicine experts, are in a unique position to promote young people’s health by improving their knowledge regarding effective use of medication through the provision of pharmaceutical services. To date, there are few studies that have explored the potential roles of primary care pharmacists in providing health care for young people with long term illnesses (2). This study attempts to show the potential role of primary care pharmacists in caring of young people with chronic illnesses. Aim To explore the role of primary care pharmacists in the management of chronic illnesses in young people aged 18-24 years. Methods A qualitative study was undertaken. From June to November 2019, semi-structured interviews were conducted with 23 primary care pharmacists in the UK. A purposive sampling strategy was followed to form a population for this study. The targeted participants were UK primary care pharmacists i.e. General Practice (GP) and community based pharmacists. Through professional networks, the participants were identified, approached and recruited by email or in person. Interviews on average lasted 35 minutes, and were audio recorded, transcribed verbatim and analysed inductively using thematic analysis. Emergent themes were reviewed by all authors and any discrepancies were resolved through discussion. Results Four themes emerged from the data: pharmacists’ roles, prescribing issues, pharmaceutical services and young people medication-related experiences. Participants identified several roles for primary care pharmacists in caring of young people with chronic illness. These roles included encouraging young people to visit the pharmacy to collect their medicines and ensuring that they have enough medicines supply, counselling and educating young people about their medicines and answering their queries, building trusted relationships directly with them, provision of specialist services, following up with young people and checking on medication compliance, and signposting them for further support. The most discussed chronic illnesses in young people by participants were respiratory diseases such as asthma and mental health illnesses. However, many pharmacists perceive a fundamental communication barrier that hinders the provision of this support, i.e., lack of access to the patient. Participants identified a lack of support from other health care providers as one of the associated challenges for pharmacists in supporting young people with chronic illness. Conclusion Primary care pharmacists felt that they have an important role in supporting young people with chronic illness. This study identified many ways in which pharmacists provide services and support to young people. This study makes a major contribution to the limited literature on primary care pharmacists’ experience of dealing with young people with chronic illness by exploring the pharmaceutical care currently available and identifying other issues which may influence pharmaceutical care. Although the research was limited by a relatively small number of participants, the findings of this research could inform future research to provide more evidence of the benefit of primary care pharmacists in supporting young people with chronic illness in the optimal use of their medication. References (1) Shah R, Hagell A, Cheung R. International comparisons of health and wellbeing in adolescence and early adulthood. London (UK): Nuffield Trust; 2019. (2) Gray N, Shaw K, Smith F, et al. The Role of Pharmacists in Caring for Young People With Chronic Illness. Journal of Adolescent Health, 2017; 60 (2): 219–225.

Previous research has shown attachment avoidance in adulthood to be a strongnegative predictor of desire to have children, bonding in pregnancy, and abilityto relate to children after birth (Rholes, Simpson, & Blakely, 1995; Rholes,Simpson, Blakely, Lanigan, & Allen, 1997). Other research has shown that relationships between adult attachment and prenatal bonding and parenting style are sometimes mediated by caregiving style (Walsh et al., 2011; Millings, Walsh, & O’Brien, 2008). The two studies presented here explore the roles of attachment and caregiving in how individuals without children think about their intentions to become a parent and their expectations of what future parenting will be like. Study 1 demonstrated that, in accordance with other literature, attachment avoidance was a good negative predictor of desire to have children, but that caregiving style did not mediate this relationship. There appeared to be different predictors for young men and young women such that attachment avoidance predicted desire to have children for women, but caregiving responsiveness to partner predicted desire to have children for men. The second study sought to replicate and extend these results by examining attachment, caregiving, and relationship influences on expectations of future parenting. This research adds to our understanding of the correlates and predictors of parenting intentions and expectations, and the relative importance of relationship and individual processes.

Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences and to be heard and taken seriously in decision making among young people with ID who are not yet considered legally adult. The purpose of the two current studies was to explore how the right to participation is negotiated for young people with ID in a family context and to determine family members' recommendations for strategies to facilitate the participation of young people with ID. In the first study, four young people with ID, their mothers and two siblings from four families took part in semi-structured interviews about decision making in the family context. In the second study, a mother and daughter from the first study discussed and developed strategies to promote participation for young people with ID. In the first study, all participants communicated that young people with ID follow an age-typical yet restricted pattern of participation in decisions about their lives. Young people's participation was consistently framed by familial norms and values as well as their families' desire to protect them. In the second study, both participants suggested communication about the outcomes of real or imagined decisions would help young family members rehearse decision-making strategies that would facilitate their autonomy while remaining within the bounds of familial norms, values and perceptions of safety. Although young people with ID may make fewer independent decisions about their lives than typically developing peers, support in decision making can enable both increased protection and independence.

To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. An interpretative qualitative design. Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: "a deep sense of loss," "an overwhelming process," "parents making transitions happen," "a shock to the adult healthcare system" and "the unbearable pressure." Nurses were often seen as instrumental to counteracting some of these challenges. There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.

Introduction The 2007 amendment to the Mental Health Act (MHA) 1983 enabled various non-medical professionals to now qualify as approved clinicians (ACs); these included social workers, mental health and learning disability nurses, clinical psychologists and occupational therapists. [1–2] As ACs, these professionals can take on roles of clinical leadership whilst assuming responsibility for patients under the Act. Although mental health pharmacists have recognised specialist clinical roles and regularly work alongside these professionals in caring for patients, they are not presently permitted to practise as ACs. Aim This study sets out to investigate the views of healthcare professionals working in a mental health trust in England on this hitherto unexplored group of the mental health workforce as potential ACs. Methods Upon obtaining ethics approval, pharmacists, ACs and other experienced mental health professionals working in one mental health trust in England were approached via internal trust email to take part in a digitally audio recorded semi-structured interview to explore their views on pharmacists as potential ACs in future. A thematic analysis is being performed on the entire set of transcripts and an additional sentiment analysis will be applied to specific parts of the dataset. Results A total of 11 interviews were completed with 6 pharmacists, 4 medical ACs and 1 ‘other’ mental health professional thus far, with recruitment ongoing. Emerging themes included wide recognition among participants of highly valued key skills of pharmacists within mental health services provision, for instance their ability to access and appraise specialist literature as well as their analytical skills to apply expert knowledge to real-life cases. Participants identified unique challenges to pharmacists potentially becoming ACs in future, namely the traditional organisational structures whereby pharmacists are line managed and clinically supervised from within a pharmacy department which sits external to the clinical teams they typically work in, and the lack of pharmacists being fully embedded in interdisciplinary teams. Conclusion Since this is the first study of its kind to be conducted on a small cohort of participants working within one mental health trust in England, this qualitative study will likely highlight the need for further research to be carried out on the topic, such as data collection in several other NHS trusts as well as recruiting participants from the working group and other stakeholders involved in the most recent amendment of the Act. Whilst data collection and analysis are ongoing, initial findings help shed light on potential barriers and also possible solutions to these, as well as other opportunities for pharmacists wishing to assume higher leadership roles within mental health services in England.

Community-based service provision for the prevention and management of maternal obesity in the North East of England: A qualitative study