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This paper seeks to report the key findings of two studies which were undertaken by Rare Disease UK to: understand patients' and their families' experiences of living with a rare disease; identify issues preventing research and access to good quality information, care, treatment and support; identify examples of good practice; and develop recommendations to improve service provision for patients with rare diseases and encourage research.

Across the two reports discussed, a range of methods were used including: a survey of patients/family members; five multi‐stakeholder working groups; conference workshops; a consultation paper; interviews; and desk research.

There are a number of detailed findings across the two reports. At a broad level, the findings identify that despite the diverse range of rare diseases each with different symptoms and prognoses, patients often face similar issues. The report also identifies a number of possible solutions to facilitate research, speed up diagnosis, improve co‐ordination of care and ensure high‐quality information is available to patients and professionals.

The findings and recommendations in the two reports discussed are informing the development of a UK plan for rare diseases by all four of the UK's health departments. This plan will be the first strategic approach to improving service provision for all patients with rare diseases in the UK.

Very little research has been conducted into the experiences of patients with rare diseases or on how to improve service provision for all rare diseases in the UK. As a result, the two reports offer a substantial body of new evidence.

Constraint-induced movement therapy (CIMT) is an effective intervention for arm recovery following acquired brain injury; however, there is an evidence-practice gap between research and CIMT use in practice. The aim of this study was to identify individual, organisational and social factors enabling implementation and sustained delivery of CIMT programs internationally.

Descriptive qualitative design. Purposive sampling was used to recruit occupational therapists and physiotherapists with previous experience delivering CIMT. Semi- structured interviews were conducted, using an interview schedule informed by the Theoretical Domains Framework (TDF) to explore individual factors (such as knowledge, skills and beliefs), organisational factors (such as organisational culture and resources) and social factors (such as leadership) influencing CIMT implementation. Interviews were audio-recorded, transcribed and managed using NVivo. The TDF guided data analysis and identification of key influences on CIMT implementation and sustainability.

Eleven participants (n = 7 [63.6%] occupational therapists and n = 4 [36.4%] physiotherapists) were interviewed from six countries, working across public (n = 6, 54.6%) and private health (n = 5, 45.5%). Six key domains influenced CIMT implementation and sustainability. Clinicians needed knowledge and opportunities to apply their skills, and confidence in their ability to implement CIMT. Within their workplace, supportive social influences (including broader team support), the environmental context (including organisational culture and resources) and reinforcement from seeing positive outcomes contributed to implementation and sustainability. Other important influences included community demand and tailoring of programs to meet individual needs.

This is the first study to examine therapists' experiences of CIMT implementation and sustainability across multiple countries. Factors related to capacity building, social and organisational support and resources enabled CIMT program implementation and ongoing sustainability. These findings can be used to design behaviour change interventions to support CIMT use in practice.

The purpose of this paper is to review the recent advancements in the development of wearable sensors which can continuously monitor critical medical, assess athletic activity, watch babies and serve industrial applications.

The paper presents an in-depth review of a number of developments in wearable sensing and monitoring technologies for medical, athletic and industrial applications. Researchers and companies around the world were contacted to discuss their direction and progress in this field of medical condition and industrial monitoring, as well as discussions with medical personnel on the perceived benefits of such technology.

Dramatic progress is being made in continuous monitoring of many important body functions that indicate critical medical conditions that can be life-threatening, contribute to blindness or access activity. In the industrial arena, wearable devices bring remote monitoring to a new level.

Doctors will be able to replace one-off tests with continuous monitoring that provides a much better continuous real-time “view” into the patient’s conditions. Wearable monitors will help provide much better medical care in the future. Industrial managers and others will be able to monitor and supervise remotely.

An expert insight into advancements in medical condition monitoring that replaces the one-time “finger prick” type testing only performed in the doctor’s office. It is also a look at how wearable monitoring is greatly improved and serving athletics, the industry and parents.

The article presents research on the long-term information needs of homicide bereaved individuals in the context of record-keeping practice within Major Crime Units (MCU) in England. The research objectives were to: (1) identify the long-term information needs of individuals bereaved by homicide; (2) establish MCU officer perceptions on the provision of information to individuals bereaved by homicide; (3) establish the current practice of MCU officers in managing and providing access to homicide records and (4) explore the capability of current recordkeeping practice to move beyond the use of homicide records for their primary “policing” purpose.

The research objectives were met by combining findings from a literature review across policing, bereavement, death, victimology, criminology, records management and archival studies with results from a singular interview-based study with officers at the Bedfordshire, Hertfordshire and Cambridgeshire Major Crime Unit (BHCMCU).

The findings indicate that the long-term information needs of homicide bereaved individuals are ill-served by the current police recordkeeping framework which provides them with little involvement in record-keeping decision-making and limited long-term access to the information required for sensemaking/adaption in a post-homicide world. In this context, the research demonstrates a long term need for: (1) information access; (2) support for access; (3) a direct and personalised information access service and (4) trauma-informed and victim/survivor centred practice in police recordkeeping contexts.

The research addresses a major gap across disciplinary research literature in its focus on the ways investigative information is disclosed by the police to the bereaved following case closure.

The purpose of this paper is to test the efficacy of an interactive verbal prompting technology (Guide) on supporting the morning routine. Data have already established the efficacy of such prompting during procedural tasks, but the efficacy of such prompting in tasks with procedural and motivational elements remains unexamined. Such tasks, such as getting out of bed in the morning and engaging in personal care, are often the focus of rehabilitation goals.

A single‐n study with a male (age 61) who had severe cognitive impairment and was having trouble completing the morning routine. An A−B−A′−B′−A″−B″ design was used, with the intervention phase occurring both in an in‐patient unit (B, B′) and in the participant's own home (B″).

Interactive verbal prompting technology (Guide) significantly reduced support worker prompting and number of errors in the in‐patient setting and in the participant's own home.

The results suggest that interactive verbal prompting can be used to support motivational tasks such as getting out of bed and the morning routine. This study used a single subject experimental design and the results need to be confirmed in a larger sample.

This is the first report of use of interactive verbal prompting technology to support rehabilitation of a motivational task. It is also the first study to evaluate Guide in a domestic context.

Young people’s attachment to their smartphones is well-documented, with smartphones often described as prostheses. While prior studies typically assume a clear human/machine divide, this paper aims to build on posthuman perspectives, exploring intercorporeality, the blurring of human/technology boundaries, between emerging adults and their smartphones. The paper aims to discuss these issues.

Drawing on assemblage theory, this interpretive study uses smartphone diaries and friendship pair/small group discussions with 27 British emerging adults.

Participants in this study are characterized as homo prostheticus, living with and through their phones, treating them as extensions of their mind and part of their selves as they navigated between their online and offline, private and social lives. Homo prostheticus was part of a broader assemblage or amalgamation of human and non-human components. As these components interacted with each other, the assemblage could be strengthened or weakened by various technological, personal and social factors.

These qualitative findings are based on a particular sample at a particular point in time, within a particular culture. Further research could explore intercorporeality in human–smartphone relationships among other groups, in other cultures.

Although other studies have used prosthetic metaphors, this paper contributes to understanding of smartphones as a prostheses in the lives of emerging adults, highlighting intercorporeality as a key feature of homo prostheticus. It also uses assemblage theory to contextualize homo prostheticus and explores factors strengthening or weakening the broader human–smartphone assemblage.

Recent scholarship has focused on the schooling experiences of Black boys in early childhood; however research on the experiences and outcomes of Black girls in early childhood remains virtually nonexistent. More research is needed to ensure that every Black girl excels in early childhood education. Through three reflections from Black early educators, written iteratively through a process of reflection, discussion, writing, and revision, this chapter highlights aspects of Black girls' schooling that can promote Black girls' rapidly developing social, emotional, regulatory, and moral capacities. Within each reflection, the educator's advance our understanding of culturally relevant pedagogy by showing how educators can “teach to and through” Black girls’ funds of knowledge. Additionally, the reflections highlight the powerful role schools play in the lives of Black girls, underscoring the need to more deeply investigate teacher's perceptions of Black girls in addition to the positive and the negative policies and practices enacted in classrooms. The chapter concludes with critical and timely recommendations for research, practice, and policy.

In his first two months at the immigration detention facility, euphemistically called a ‘shelter’, Deruba consumed his daily lessons of vocabulary and math. ‘Good morning. My name is Deruba. What is your name?’ he would chant. ‘I am from Guatemala. Where are you from?’ ‘Good afternoon. How are you? I am fine’. He had only attended school for four years in Guatemala before his parents died in a bus accident forcing him to support his younger sister, Isura. ‘It was not a good time. We did not have anybody. No aunts, no uncles to help us. My grandparents died long ago. I don't even remember them. It was just me and my little sister’.⁵ Deruba, 13 years old at the time, and Isura, then 11 years old, lived on the streets of Livingston, Guatemala for over 2 years. He worked as a boat hand on boats [lanchas] transporting tourists to Livingston, painting cars at a small auto body shop and selling marijuana to young German and American tourists coming to soak up Livingston's bohemian environs.⁶

Globalization, advanced by technologies of production and information, created seamless world markets with profound impacts on the world economy. Vast amounts of wealth have been created, but that wealth has been unequally distributed. Such inequality has meant that large numbers of young people have not been able to find the kinds of jobs and careers that provide the “goods” life extolled in a consumer society. Nor do the dominant values of rationality, neo-liberalism or secularism hold much appeal. These conditions have encouraged the emergence of a number of subcultures of transgression, identity-granting communities of meaning which provide members with a sense of community with recognition and empowerment. As many such subcultures repudiate dominant norms, we note how they resemble the medieval carnival, which Bakhtin showed was a time and place of inversion, transgression, and celebration of the grotesque. It allowed the common people encapsulate realms of agency to articulate disdain and resistance. Yet this served to reproduce the dominant system.

In much the same way, insofar as globalization is intimately tied to cities, we have seen the growing importance of cities as nodal points for global commerce as well as sites for entertainment and tourism. These factors, together with the longstanding anonymity and toleration of the city, have become focal points for the emergence of a number of oppositional subcultures. They include those who embrace extreme body modification, numerous forms of body adornment through piercings (rings, posts, studs), tattoos, and surgical modifications such as implanted horns, furrows, or split tongues. Following Simmel, adornment can be seen as a means of inclusion within a group and differentiation from others. The practitioners of extreme body modification label themselves “urban primitives,” who see themselves rejecting global modernity, the occupation-based status hierarchies of the dominant occupational system and its shallow, materialistic culture. They see themselves as a moment of the “transvaluation of values” in which Dionysian passion triumphs over Apollonian control and restraint. This is especially evident in various genital decorations in which what heretofore has been private and exposure was a matter of shame. There has been a “cultural transformation of the pubic sphere.” While such groups find community, identity and recognition, they must also be understood as a key ingredient of the city in a global age in which diversity, cosmopolitanism, and the offbeat constitute essential moments of urban ambience.