Learning disabilities: Interventions and clinical issues

Abstract

Welcome to the third issue of BJLD for 2019. At the end of this year, my tenure as Editor in Chief of BJLD comes to an end—those six years seems to have flown by. In this issue, as is always the case, a wide range of papers are presented that includes sexuality, sleep hygiene, relational needs of people with learning disabilities, reducing inappropriate polypharmacy in the context of challenging behaviour. Also presented are issues of caregiver burden, both from an Irish and from an English context, use of valproate by women with intellectual disabilities and the relationship between practice leadership and better staff experiences of working with people with learning disabilities who may present with challenging behaviours, so an issue, focussing as it does, of intervention and clinical issues. The first paper of this issue by Azzopardi Lane and colleagues from England, although the work is based upon participants from Malta, explores the sexuality of young persons with learning disabilities in Malta. Data were collected from people with learning disabilities and subjected to interpretative phenomenological analysis to decode these qualitative data. They found context of disabling social attitudes, stereotypical gender imagery and exclusionary social practices. In addition, young people with learning disabilities seemingly experience a lack of community support and social networking, thus calling for platforms and spheres where they can form and maintain friendships and relationships. They conclude that Malta lacks a fundamental social acceptance that people with learning disabilities are sexual beings, with the right to express their sexuality and to form relationships. They suggest that overcoming such cultural hurdles will empower people with learning disabilities to establish and express their sexual identities. In the second paper, Sutton and colleagues from England explore sleep hygiene education (SHE) which is now seen as a familiar intervention for addressing behavioural sleep problems in children with developmental disabilities; however, they argue it is supported by a limited evidence base. They have embarked on an exploratory study that aimed to enhance qualitative understanding and explore stakeholder perceptions about experience, current practice and ideas around the implementation of SHE. Parents of children with developmental disabilities and sleep problems (N = 9) and sleep practitioners (N = 11) took part in semi-structured interviews and focus groups, and data were subsequently thematically analysed. This analysis identified four parent themes: “Beliefs about sleep problems”, “Getting professional help”, “Ways of knowing about sleep” and “Visions of sleep support”. Two practitioner themes were also identified: “Sleep service accessibility” and “Inconsistent sleep support”. They conclude that their findings provide further insight into how parents of children with developmental disabilities experience sleep problems, and how SHE is currently implemented arguing that these have implications for both policy and practice. The next paper by Cudré-Mauroux, et al., from Switzerland points out that relationship interventions to increase self-determination of people with learning disabilities is a major issue for social care. Their study examines relational needs of people with learning disabilities regarding their self-determination in the context of the relationships they share with social care professionals. In their study, they conducted focus group discussions to explore the relational needs of 10 residents and 10 educators at three facilities for people with learning disabilities located within the French part of Switzerland. They found that the relational needs expressed by participants with learning disabilities were concerned with three distinct stages of the self-determination process (pre-choice, post-choice and goal achievement). They conclude on the importance of the relational quality of interventions aimed to enhance self-determination of people with learning disabilities. In the next paper by Nancarrow, et al., from the UK states that intellectual disability (ID) is associated with polypharmacy particularly the use if “off-label” psychotropics for “challenging behaviour”. They identify NHS England’s introduction of the “stopping over medication of people with a learning disability (LD), autism or both” (STOMP) initiative. As ID services are a professionally diverse group, it is important to know whether teams have suitable knowledge to deliver STOMP. In their paper, they report on the impact of delivering bespoke STOMP training was evaluated. In their work, they used a 21-item multiple-choice questionnaire which was distributed to three specialist ID teams in the south-west of England. Current best practice and national guidance knowledge on psychotropic medication use in intellectual disability were assessed. One team received bespoke training covering the content of the questionnaire prior to its completion. They found from their survey that participation was 44% (21/48) from the trained team, and 34% (15/44) and 70% (7/10) from the untrained teams. The trained team participants scored over 80% on 19/21 questions compared to 15/21 and 16/21 in the untrained teams. Subspeciality analysis of pooled data (n = 43) showed nursing scored more than 80% on 16/21 questions, psychology 15/21 and allied health professionals (AHPs) 19/21. Nursing and psychology both reported STOMP to be a priority. They found that the majority responded “yes” to potentially being involved in STOMP. They conclude that better STOMP knowledge and understanding of best practice and guidelines are associated with training. Nursing and psychology are essential to STOMP delivery but scored lower than AHPs. We recommend semi-structured STOMP training developed locally with national underpinnings for all specialist ID teams, particularly focussed on front-line staff directly involved in the management of challenging behaviour. Next Egan and Dalton from Ireland report that people with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. They state the literature identifies these caregivers are at risk of burden. Their study aimed to measure the level of caregiver burden amongst older carers of adults with intellectual disabilities in an Irish sample and to analyse the effects of socio-demographic factors upon experiences of caregiver burden. In the study, they report on thirty caregivers completed a survey questionnaire. Data were collected based upon participants’ self-reports of burden using the Zarit Burden Interview (ZBI) and a socio-demographic questionnaire; data were then analysed using SPSS version 24. They found that over 57% of carers indicated a mild-to-moderate level of burden. Analysis indicated that younger caregivers experienced significantly higher levels of burden, when compared to older caregivers. They conclude that their study contributes to an understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden, and the importance of proactive assessment and support for these caregivers. Sawney, et al., from England present a clinical paper that acknowledges the well-established evidence that valproate, and its valproic acid, sodium valproate, and valproate semisodium forms is a highly teratogenic drug with that evidence suggesting that use in pregnancy leads to physical birth defects in 10% of children born compared with a background rate of 2% to 3%. Congenital malformations associated with valproate are predominantly neural tube defects, clefting abnormalities, cardiovascular defects, genitourinary defects in males and musculoskeletal defects. There is also increased risk of developmental delays, and this includes delays in walking, talking, poor language skills, memory problems and low intellectual ability in approximately 30 to 40% children born to mothers taking valproate. Furthermore, developing foetuses, if exposed to valproate in utero, are at increased risk of autistic spectrum disorder (approximately threefold) and also more likely to develop symptoms of attention-deficit/hyperactivity disorder. Subsequently, valproate preparations prescribed to treat epilepsy are now contraindicated in pregnancy unless there is no suitable alternative treatment. In addition, valproate preparations prescribed for bipolar disorder have an absolute contraindication in pregnancy. Consequently, they explore the implications for practice of prescribing valproate containing medicines for women of childbearing potential. They point to a risk acknowledgement form that must now be completed annually in the UK. For people without capacity to consent, this form may be completed by a relative or other appropriate person. However, for people with intellectual disabilities, even with capacity, healthcare professionals will need to ensure that the information on the form is accessible, in order that they can understand it. Often intellectual disability nurses have a pivotal role, on behalf of the interdisciplinary team (IDT), in identifying women of childbearing potential who are currently prescribed valproate. Notwithstanding the IDT also has a role in engaging with patients during discussions to ensure they understand the conditions of prescribing. It is important that the IDT understand their role in patient engagement to facilitate shared decision making. Therefore, for women with intellectual disabilities with capacity, consent to treatment must be “informed”, and all risks will need to be communicated to the woman, exploring alternatives in order to comply with the Montgomery Judgement. Specialist intellectual disability nurses have a pivotal role in discussing appropriate contraceptive advice, and sign-posting women to local services. They conclude that valproate preparations prescribed to treat epilepsy are contraindicated in pregnancy unless there is no suitable alternative treatment; in addition, valproate preparations prescribed for bipolar disorder have an absolute contraindication in pregnancy. It is imperative that specialist intellectual disability services are able to advise the wider primary healthcare team on best practice. Additionally, those with prescribing responsibilities, and particularly specialist intellectual disability epilepsy nurses, along with the wider IDT, must be aware of these new regulations. In the penultimate paper, Deveau and McGill from England state that previous research concerning the relationship between practice leadership, and better staff experiences of working with people with learning disabilities who may show challenging behaviours is important. However, they state little is known about what, if any, the frequency and accessibility of frontline managerial support have upon staff experiences, or on the provision of practice leadership. Current policy and practice in England may lead to frontline managers being responsible for more fragmented services, thus influencing the accessibility of managerial support and practice leadership for staff. Their study investigated the impact on staff experiences of frequency of contact with service manager and of practice leadership. Adopting a single point in time survey of 144 staff measured: characteristics of service users, frequency of contact with manager, practice leadership and staff experiences, for example burnout, teamwork and job satisfaction. They found that practice leadership to be positively associated with more frequent contact with the manager. Better staff experiences were associated with more frequent contact with the manager and practice leadership and negatively with challenging behaviours. They conclude that associations between practice leadership, manager contact and better staff experiences suggest further research, and organisational action is needed to provide management support for staff. In the final paper, Devellie et al. from England further explore the issue of older carers previously reported in this issue by Egan and Dalton, but this time within an English rural context. They suggest that given a significant number of adults with learning disabilities live with, and are cared for, by their parents there is a pressing need for interventions to support older parent carers with their role and to plan for a time when they can no longer continue caring. They report on the experiences of older parent carers who have been in receipt of an intervention to support future planning, in a rural part of England, delivered to older carers of their adult children with learning disabilities. Following semi-structured carer interviews (n = 12), data were obtained and then analysed thematically. Four themes were identified “emotional needs of carer”, “future planning”, “accessing other services and resources”, and, “links to adult care services”. Carers welcomed the flexibility of the intervention and its focus on support for them, relieving their sense of isolation. Their research highlights the unmet needs of older family carers and demonstrates the value of tailored support from a carer perspective, as did the Irish study. They argue, quite rightly in my view, that their findings have implications for national social care provision delivered to carers of adult children with learning disabilities in rural areas. As I often say when concluding my editorials—I hope that you have found something of interest in this issue. The submission of such high-quality papers is continuing testimony that British Journal of Learning Disabilities traverses professional boundaries, as well as academic disciplines concerning learning disabilities. The Journal continues to welcome engagement from all, both from the UK and from wider afield. This might be through following and, or, subscribing to the Journal, submitting high-quality contemporary papers, volunteering to review papers for us or submitting a guest editorial. Equally the Journal is open to suggestions for special issues on major topics, or submission of reviews of books and, or, training materials, or indeed your own views to the letters section; please do feel that you can contribute.