Sharon Levy

Growing up with confidence: using telehealth to support continence self-care deficits amongst young people with complex needs

BACKGROUND Many young people with chronic ill health use technology for self-care activities, but little is known about the use of telehealth amongst those with spina bifida. The limited availability of specialist continence nurses in primary care settings, for this client group in the UK, exacerbates their reliance on parents or carers. OBJECTIVES 1. Exploring the way in which home-based and technology-enabled clinical interventions affect young peoples engagement in continence self-care. 2. Articulating the way in which telehealth impacts on nursing practice and the conduct of remote clinical encounters. METHODS A virtual nurse-led clinic was established to support a small cohort of service users and their parents from home. Data from participants were collected and analysed alongside a narrative record of a reflective diary, used by the continence specialist nurse. RESULTS Participants reported increased level of self-confidence, which was attributed to interacting remotely with the specialist nurse. The virtual clinic assisted users to attain some self-care goals as well as assert their role as partners in care planning. The specialist nurse gained new valuable skills in mastering telehealth technology and managing remote clinical provision. CONCLUSIONS Using Skype™ to support young people with complex needs is an effective intervention to support continence care at home. Dedicated technical support during the initial set-up phase and on-going clinical mentorship are needed to ensure that telehealth is successfully embedded within health care practice.

Transition into adult healthcare services in Scotland: findings from a study concerning service users at the Scottish Spina Bifida Association

Background and Aims Literature on interventions that enable young people with spina bifida and/or hydrocephalus to have smooth transition, into adult healthcare services, stress the need for the process to start early and to include all family members. The study reported here was set to quantify and articulate the experiences of service users who are or due to be going through the transition process in Scotland today. Methods and Results Focus group sessions, in the North of Scotland and in the ‘Central Belt’, captured rich qualitative data. A survey, sent to eligible participants on the Spina Bifida National database, offered complimentary data source. Despite the fact that the number of returned questionnaires was low (n = 20), data analysis identified a number of core recurring themes. These include issues concerning Communications, Respect, Choice and Control. Findings suggest that there is a significant chasm between the political rhetoric and the reality faced by young people with spina bifida moving to adult healthcare services. Conclusion A possible way to facilitate successful transition of young people is using personal healthcare information as the locus for needed change. More research is needed to ascertain whether a ‘Person-Centred Record’, which is set to empower young people on their transition pathway, is an appropriate transition tool.

Review: Cyber nursing - a conceptual framework

The literature concerning the practice of professional care, in the digital age, is littered with terms that are set to aid further articulation of the phenomena. Yet some buzzwords, such as ‘Telenursing’ or ‘eNursing’, are neither explicitly defined nor consistently used – leading to difficulties in the sharing of common understanding. Moreover, the plethora of concepts and ideas hinders efforts to design research that explores the contribution of, and impact on, nursing stemming from rapid developments in this constantly evolving arena. The reviewed paper presents a culmination of research efforts to describe and explain activities or the practice of caring in a virtual environment. The conceptual framework and the associated themes offer a new terminology with which to explore what is coined ‘cyberspace’. Uniquely, the paper couples the language and behaviours of users on digital (social) platforms with a core nursing theory (Orem, 1995). By doing so, the authors offer a new prism with which to explore self-care activities and take account of new and innovative ways to enable people to maintain and enhance their sense of well-being. However, while the language of cyber nursing should contribute to efforts to advance knowledge through research, which the authors claim is most needed, the paper also raises some concerns. The learning pathway that enables novice professionals to grasp the essence of nursing – the art and science of caring – gives students the tools and holistic knowledge to competently care for people. The risk to the ‘cyber patient’ from administration of care by ‘cyber cowboys’ should not be underestimated. It was argued that in order to support nursing in a digital age, professionals need a language with which to express the essence and value of nursing. Clark (2003) stressed the necessity to identify and use the right terminology that makes the contribution of nursing visible. In 21st century healthcare provision, where electronic systems are being used to support effective and efficient patient care, this plea remains current. Digital systems must capture data that clearly demonstrate what nurses do, for what patient condition and with what results. The challenge to the profession and to the nurse researcher, as posed by the paper, is finding ways to ‘explore and monitor cyber nursing activities’, while considering how

Future-proofing services.

professionals, I discovered that there were some elements of SBMH that were valued by students and education staff, and that were important to the success of SBMH programmes. From this insight, I formulated the SPICE model, which encapsulates the elements of SBMH that are effective: Space, Presence, Integration, Collaboration, Expertise. The SPICE model enabled me to identify areas for improvement at home. In addition, I learned about the Positive Behaviour Support (PBS) model and its benefi ts for young people. Based on what I learned, I have made recommendations to improve collaboration between CAMHS and education services, as well as implementing an adapted PBS model at Ash Villa NS RESOURCES

Transitioning home: A four-stage reintegration hospital discharge program for adolescents hospitalized for eating disorders.

PURPOSE Treatment for adolescents with eating disorders (ED) is multidimensional and extends after hospitalization. After participating in a four-step reintegration plan, treatment success including post-discharge community and social reintegration were examined from perspectives of patients, family members, and healthcare providers. DESIGN AND METHODS Six pairs of patients and parents, and seven parents without their children were interviewed 2 to 30 months following discharge. RESULTS All but two adolescents were enrolled in, or had completed school. Five worked in addition to school, and three completed army or national service. Twelve were receiving therapeutic care in the community. PRACTICE IMPLICATIONS Adolescents with ED can benefit from a systematic reintegration program, and nurses should incorporate this into care plans.