The Point of Care Foundation

Objectives Social media is widely used by the general population to maintain and expand social relationships and promote wellbeing. This study explores use of social media by younger people with intellectual disabilities who are established users of social media at the end of the social restrictions associated with the COVID-19 pandemic in the UK. Methods Eleven participants from a rural part of England; five males and six females with an age range of 18-35 years, who were active users of social media, were interviewed about their experiences. Interview questions were developed based on an initial template of codes derived from two systematic meta-syntheses relating to social media use, published before COVID-19. This initial template was then used as a starting point for analysis of transcripts. Results The final template had one overarching theme of self-determination and three primary themes of cyber safety, social media as a vehicle of autonomy, and sense of self. Compared to their pre-COVID-19 experiences, social media was more identified as used to maintain social relationships and was more used to access information about health issues such as COVID-19. Conclusions The results offer a positive picture of the use of social media and its importance in self-determination, health promotion and the maintenance of wellbeing for younger people with intellectual disabilities who are established users of social media. Practice implications and areas for future research are discussed.

Previous systematic reviews of the relationships of people with intellectual disabilities have included consideration of intimate relationships. In this paper, we report a systematic review of papers describing friendship only. A systematic qualitative meta-synthesis of the research exploring experiences of friendship as reported by people with intellectual disabilities. Seven papers met the inclusion criteria for analysis. Three superordinate themes were identified. (1) Reciprocity, 'Someone who helps me, and I help them'. (2) The building blocks of friendships, 'I can tell her some secrets'. (3) Managing friendship difficulties, 'In real life it's much harder'. People with intellectual disabilities value friendship and actively engage in reciprocal exchanges. We explore the strengths and limitations of current research, clinical implications, and directions for future research.

There are many pressing questions about how to deliver adult social care services. Where research evidence exists to address these questions, there is often limited use by social care commissioners, providers and the workforce. Sometimes this is attributed to the lack of perceived relevance and accessibility of the research itself, at other times it is considered to be a matter of individual and organizational capacity. As things stand, there is a gap between social care research and practice. Improving interaction between different stakeholders in the research process is a contemporary mechanism for promoting the production of research that is useful, usable and used. This paper describes one collaborative approach called Research Practice Partnerships (RPPs). These partnerships share the goal of benefit for all partners and are supported by a growing international evidence base. This paper summarizes some of the key literature from different countries and contexts where the approach has been tried. It highlights the main features of RPPs, introduces a project setting up three new partnerships in the care home sector in England and highlights aspects of the theory of change that will guide the evaluation of the partnerships. In doing so, the paper introduces a promising collaborative approach to a social care audience and considers whether RPPs have the potential to achieve meaningful and impactful research in social care contexts.

ObjectivesWe tested a modified co-design process to develop a set of high-level design principles for visual identification systems (VIS) for hospitalised people with dementia.DesignWe designed and ran remote workshops in three phases with carers of people with dementia and healthcare staff. In phase 1 we presented participants with scenarios based on findings from prior research, prompting participants to discuss their own experiences of VIS. Phase 2 used more future-focused scenarios, prompting participants to co-design improved VIS. In phase 3, a set of provisional design principles developed from our analysis of phases 1 and 2 data were discussed.SettingOnline workshops.ParticipantsA total of 26 carers and 9 healthcare staff took part in a pilot and three separate workshops.ResultsWe identified a set of six dementia-friendly design principles for improving the effectiveness of VIS: (1) The hospital trust provides a professionally-trained workforce and an appropriate culture of care; (2) the symbol is easily recognisable and well understood; (3) key personal information is readily available and accessible; (4) key personal information is integrated into the electronic patient record; (5) relatives and carers are involved in providing key information and monitoring care; (6) the principles need to function as a system to be successful. Participants suggested that, in addition to the use of an identifier and key personal information, professional standards training, effective information and records management and improved means to involve carers and/or families were key to the effective operation of VIS, leading us to expand a narrow understanding of a VIS.ConclusionUsing a scenario-led co-design approach can help trigger useful discussions with staff and carer groups, identify current problems with VIS and develop a set of high-level design principles for their improvement. These principles reveal day-to-day frictions that require further attention and resolution.

Background Recently, a patient with maternal uniparental disomy of chromosome 16 (UPD(16)mat) presenting with Silver-Russell syndrome (SRS) phenotype was reported. SRS is characterised by growth failure and dysmorphic features. Objective To clarify the prevalence of UPD(16)mat in aetiology-unknown patients with SRS phenotype and phenotypic differences between UPD(16)mat and SRS. Methods We studied 94 patients with SRS phenotype of unknown aetiology. Sixty-three satisfied the Netchine-Harbison clinical scoring system (NH-CSS) criteria, and 25 out of 63 patients showed both protruding forehead and relative macrocephaly (clinical SRS). The remaining 31 patients met only three NH-CSS criteria, but were clinically suspected as having SRS. To detect UPD(16)mat, we performed methylation analysis for the ZNF597:TSS-differentially methylated region (DMR) on chromosome 16 and subsequently performed microsatellite, SNP array and exome analyses in the patients with hypomethylated ZNF597:TSS-DMR. Results We identified two patients (2.1%) with a mixture of maternal isodisomy and heterodisomy of chromosome 16 in 94 aetiology-unknown patients with SRS phenotype. Both patients exhibited preterm birth and prenatal and postnatal growth failure. The male patient had ventricular septal defect and hypospadias. Whole-exome sequencing detected no gene mutations related to their phenotypes. Conclusion We suggest considering genetic testing for UPD(16)mat in SRS phenotypic patients without known aetiology.

During the autumn of 2015, 21 Schwartz Rounds were held in England and Wales with the same topic: what makes a compassionate relationship between caregiver and patient? Participants explored themes such as the nature of compassion; what makes compassion difficult, and how to be compassionate, and the discussion within these themes and others are summarised. Many examples of compassionate behaviour provided by participants in the Rounds bear out concepts of compassion found in the academic literature. It is clear that providing consistent compassionate care is challenging. Caregivers discussed what enables compassion and emphasised the importance of the nature of the relationship with their colleagues, as well as with their patients.