Technology adoption in health care: International barriers and opportunities to telemedicine

Although telemedicine and telehealth are seen as discrete entities by some authors, both The Cochrane Library (2010) and the WHO (2009) acknowledge that definitions overlap. The broad and encompassing definition underpinning the WHO (2009) report states that telemedicine is: The delivery of health care services, where distance is a critical factor, by all health care professionals using information and communication technologies for the exchange of valid information for diagnosis, treatment and prevention of disease and injuries, research and evaluation, and for the continuing education of health care providers, all in the interests of advancing the health of individuals and their communitie

Transition: Inevitable, special, extraordinary, and uncertain

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Parents' and children's beliefs and concerns about taking medicines

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A Qualitative Study of Communication between Young Women with Disorders of Sex Development and Health Professionals

Background and Objectives. Health communication is a critical aspect of care for both providers and recipients having a direct influence on engagement and outcomes. Communicating which in this context includes talking and listening in order to share information or support young women to understand their DSD can be difficult especially since the topic area is sensitive. Methods. In this qualitative study thirteen young women (aged 14–19 years) with a disorder of sex development who engaged with health care professionals were purposively recruited between 2011 and 2012 from three specialist centres across the United Kingdom. The young women either were interviewed or completed a diary about their experiences of communication with a range of health care professionals. An interpretative phenomenological approach was used to analyse these data. Results. By analysis of data the young women were able to clearly articulate the qualities and skills health professional needed in relation to communication. Two main categories focused on the duty in which professionals have to share information and their role in supporting young women to manage this information. Discussion and Conclusion.The study results revealed that these young women with a DSD expected to meet skilled professionals who could recognise the emotional aspects of dialogues in the short and longer term

Key Working for Families with Young Disabled Children

For families with a disabled child, the usual challenges of family life can be further complicated by the need to access a wide range of services provided by a plethora of professionals and agencies. Key working aims to support children and their families in navigating these complexities ensuring easy access to relevant, high quality, and coordinated care. The aim of this paper is to explore the key worker role in relation to “being a key worker” and “having a key worker”. The data within this paper draw on a larger evaluation study of the Blackpool Early Support Pilot Programme. The qualitative study used an appreciative and narrative approach and utilised mixed methods (interviews, surveys and a nominal group workshop). Data were collected from 43 participants (parents, key workers, and other stakeholders). All stakeholders who had been involved with the service were invited to participate. In the paper we present and discuss the ways in which key working made a difference to the lives of children and their families. We also consider how key working transformed the perspectives of the key workers creating a deeper and richer understanding of family lives and the ways in which other disciplines and agencies worked. Key working contributed to the shift to a much more family-centred approach, and enhanced communication and information sharing between professionals and agencies improved. This resulted in families feeling more informed. Key workers acted in an entrepreneurial fashion, forging new relationships with families and between families and other stakeholders. Parents of young disabled children and their service providers benefited from key working. Much of the benefit accrued came from strong, relational, and social-professional networking which facilitated the embedding of new ways of working into everyday practice. Using an appreciative inquiry approach provided an effective and relevant way of engaging with parents, professionals, and other stakeholders to explore what was working well with key working within an Early Support Pilot Programme

E-survey of current international physiotherapy practice for children with ataxia following surgical resection of posterior fossa tumour.

ObjectiveTo determine current international practice regarding physiotherapy input for children with ataxia following surgery for posterior fossa tumour. Design: An e-survey covering the following domains: participant demographics, treatment/ intervention, virtual training, intensity/timing of treatment, and aims and outcomes of physiotherapy management.ParticipantsPhysiotherapists involved in the management of children with ataxia following surgical resection of posterior fossa tumour. Participants were contacted via 6 key groups; Paediatric Oncology Physiotherapy Network (POPs), Association of Paediatric Chartered Physiotherapists (APCP), European Paediatric Neurology Society (EPNS), International Society of Paediatric Oncology (SIOP)-Europe Brain Tumour Group, Posterior Fossa Society (PFS), and Pediatric Oncology Special Interest Group (SIG) (American Physical Therapy Association).ResultsA total of 96 physiotherapists participated: UK (n =53), rest of Europe (n = 23), USA/ Canada (n = 10), and Australia/NZ (n = 10). The most common physiotherapy interventions used were balance exercises, gait re-education and proximal control activities. The most frequently used adjuncts to treatment were mobility aids and orthotics. Challenges reported regarding physiotherapy treatment were: reduced availability of physiotherapy input following discharge from the acute setting, lack of evidence, impact of adjuvant oncology treatment, and psychosocial impact.ConclusionThis e-survey provides an initial scoping review of international physiotherapy practice in this area. It establishes a foundation for future research on improving rehabilitation of ataxia in this population

Navigating uncertainty: health professionals’ knowledge, skill and confidence in assessing and managing pain in children with profound cognitive impairment

There is limited evidence to underpin the assessment and management of pain in children with profound cognitive impairment and these children are vulnerable to poor pain assessment and management. Health professionals working with children with profound cognitive impairment from a single paediatric tertiary referral centre in England were interviewed to explore how they develop and acquire knowledge and skills to assess and manage pain in children with cognitive impairment. The interviews were transcribed and subjected to thematic analysis. Nineteen health professionals representing different professional groups and different levels of experience participated in the study. A meta-theme ‘navigating uncertainty; deficits in knowledge and skills’ and two core themes: ‘framing as different and teasing things out’ and ‘the settling and unsettling presence of parents’ were identified. Uncertainty about aspects of assessing and managing the pain of children with cognitive impairment tended to erode professional confidence and many discussed deficits in their skill and knowledge set. Uncertainty was managed through engaging with other health professionals and the child’s parents. Most health professionals stated they would welcome more education and training although many felt that this input should be clinical and not classroom oriented

Service user involvement in practitioner education: movement politics and transformative change

This paper will attempt to both celebrate key developments and best practice involving the users of health and social care services in programmes of practitioner education in a UK context, and offer a critical appraisal of the extent to which such initiatives meet some of the more transformative objectives sought by service users activists for change. The approach is largely that of a discussion paper but we illustrate some of the themes relating to movement activism with selected data. These data relate to earlier research and two specially convened focus groups within the Comensus initiative at the University of Central Lancashire; itself constituted as piece of participatory action research. We conclude that universities represent paradoxical sites for the facilitation of debate and learning relevant to key issues of social justice and change. As such, they are places that can impede or support movement aims. Particular strategic responses might be more likely to engender progressive outcomes. These ought to include the presence of critically engaged academic staff operating within a scholarly culture that fosters forms of deliberative democratic decision making

Evaluating a telehealth intervention for urinalysis monitoring in children with neurogenic bladder

Telehealth as a community-monitoring project within children’s urology care is an innovative development. There is limited evidence of the inclusion of staff and parents in the early-stage development and later adoption of telehealth initiatives within routine urological nursing care or families’ management of their child’s bladder. The aim was to explore the experiences of key stakeholders (parents, clinicians, and technical experts) of the proof of concept telehealth intervention in terms of remote community-based urinalysis monitoring by parents of their child’s urine. A concurrent mixed-methods research design used soft systems methodology tools to inform data collection and analysis following interviews, observation, and e-surveys with stakeholders. Findings showed that the parents adopted aspects of the telehealth intervention (urinalysis) but were less engaged with the voiding diary and weighing. The parents gained confidence in decision-making and identified that the intervention reduced delays in their child receiving appropriate treatment, decreased the time burden, and improved engagement with general practitioners. Managing the additional workload was a challenge for the clinical team. Parental empowerment and self-efficacy were clear outcomes from the intervention. Parents exercised their confidence and control and were selective about which aspects of the intervention they perceived as having credibility and which they valued