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

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

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

Editoria

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

Place Bonding in Children's Hospice Care- a qualitative study

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.Background Limited knowledge exists of parents’ perceptions and experiences of children’s hospices and how these contribute to the varied access and uptake of services. Aim This study aimed to explore parents’ perspectives and experiences of a hospice, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision. Methods A two-phase qualitative study underpinned by a constructivist grounded theory methodology was employed. Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24). Phase 2 used in-depth semi-structured interviews with parents of children who did not use the hospice (n=7) and with parents who had previous experience of using a hospice (n=7). Results A grounded theory of place bonding was developed which illustrates the cognitive journey taken by parents of children with life-limiting conditions considering/receiving hospice care for their child. Conclusions Finding a place where they belonged and felt at ‘home’ made the decision to accept help in caring for their child with a life-limiting condition more acceptable. The theory of place bonding offers children’s hospices a new perspective from which to view how parents access, accept and build relationships at the hospice

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

Developing a framework to support the delivery of effective pain management for children: an exploratory qualitative study

Two million children are admitted to hospital every year in the UK and between 59 and 94% will experience pain, with 27-40% of them experiencing moderate to severe pain. Currently there are a number of well researched guidelines on children’s pain available, yet pain prevalence is high. Despite the guidelines there is a lack of an overall framework that includes the necessary components to deliver effective pain management. This study built on previous work about key elements that support children’s pain management, by exploring their relevance and practical application with 43 health care practitioners. We carried out focus groups with Band 5 nurses (n=6), Advanced Nurse Practitioners (n=11), and semi structured interviews with Pain Nurses (n=16), and Consultants (n=10). We also presented and discussed our findings with an Advisory Group. Findings demonstrated that the following elements were considered to be important: delivering pain management with confidence, supporting colleagues with protocols and guidance, empowering parents to be involved in pain management and adopting an individual approach to a child and family. These elements formed the basis of a framework for children’s pain management. Some practitioners indicated that pain management required education as well as more resources and that the culture of an area could influence pain management practice. The framework brings together elements that have the potential to improve the management of children’s pain through its use as an education tool in facilitating the development of skilled confident pain practitioners, who empower parents to engage in their child’s pain care. Each interrelated element of the framework plays an important part in the overall management of children’s pain. Information sheets, posters and an animation have been developed to support the dissemination of the findings to health care practitioners, parents and educators

‘Communicating Lily’s Pain’: a reflective narrative commentary about co-creating a resource to provoke thinking and change about assessing and managing the pain of children with profound cognitive impairment:Communicating Lily’s Pain

This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called Lily and the skills her mother uses and the challenges that her mother faces in assessing and managing Lily's pain. The animation is built on stories drawn from qualitative research findings, conversations while in clinical practice and with members of the general public, parent advisers and other sources. Most of the “evidence” came from stories shared by parents and healthcare professionals. This paper draws on some elements of socio‐narratology and is predicated on the basis that stories are important and they can act on and with us. By using an animation to tell Lily's story, the intention was to communicate research findings to a wider and more diverse audience than the typical readership of an academic journal. The intention was to act in and on people's consciousness about children's pain and to strengthen relationships and create bonds between clinicians, parents, and children in pain to make their dialog more social, connected, and meaningful. All three of us—the researcher, the writer, and the animator—have been marked and “re‐shaped” by our work related to creating Lily; we have learned more about children like Lily and their mothers, and we have learned more about ourselves and our humanity. This animation is still a story in progress, a story ‘in the wild’, a story (and a resource) we would like you to re‐tell and share. The story of Lily's pain aimed to change the lives of parents and children and professionals. Our hope is that you can be part of that change