Evaluation of the performance of elastomeric pumps in practice : are we under delivering on chemotherapy treatments?

Background and aims: Elastomeric pumps are widely used to facilitate ambulatory chemotherapy, and studies have shown that they are safe and well received by patients. Despite these advantages, their end of infusion time can fluctuate significantly. The aim of this research was to observe the performance of these pumps in real practice and to evaluate patients' satisfaction. Methods: This was a two-phase study conducted at three cancer units over 6 months. Phase-1 was an observational study recording the status of pumps at the scheduled disconnection time and noting remaining volume of infusion. Phase-2 was a survey of patients and their perception/satisfaction. Ethical approval was granted. Results: A total of 92 cases were observed covering 50 cases disconnected at hospital and 42 disconnected at home. The infusion in 40% of hospital disconnection cases was slow, with patients arriving at hospital with unfinished pumps; 58% of these had an estimated remaining volume which exceeded 10 mL with 35% exceeded 20 mL. In 73% of these cases, and regardless of the remaining volume, the patient was disconnected and the pump was discarded. Conclusions: The performance of pumps varied, which affected nurse workload and patients' waiting-times. A smart system is an option to monitor the performance of pumps and to predict their accuracy

The evolution of HIV policy in Vietnam: from punitive control measures to a more rights-based approach

Aim: Policymaking in Vietnam has traditionally been the preserve of the political elite, not open to the scrutiny of those outside the Communist Party. This paper aims to analyse Vietnam's HIV policy development in order to describe and understand the policy content, policy-making processes, actors and obstacles to policy implementation. Methods: Nine policy documents on HIV were analysed and 17 key informant interviews were conducted in Hanoi and Quang Ninh Province, based on a predesigned interview guide. Framework analysis, a type of qualitative content analysis, was applied for data analysis. Results: Our main finding was that during the last two decades, developments in HIV policy in Vietnam were driven in a top-down way by the state organs, with support and resources coming from international agencies. Four major themes were identified: HIV policy content, the policy-making processes, the actors involved and human resources for policy implementation. Vietnam's HIV policy has evolved from one focused on punitive control measures to a more rights-based approach, encompassing harm reduction and payment of health insurance for medical costs of patients with HIV-related illness. Low salaries and staff reluctance to work with patients, many of whom are drug users and female sex workers, were described as the main barriers to low health staff motivation. Conclusion: Health policy analysis approaches can be applied in a traditional one party state and can demonstrate how similar policy changes take place, as those found in pluralistic societies, but through more top-down and somewhat hidden processes. Enhanced participation of other actors, like civil society in the policy process, is likely to contribute to policy formulation and implementation that meets the diverse needs and concerns of its population

Limitations and pitfalls of using family letters to communicate genetic risk: a qualitative study with patients and healthcare professionals

European genetic testing guidelines recommend that healthcare professionals (HCPs) discuss the familial implications of any test with a patient and offer written material to help them share the information with family members. Giving patients these “family letters” to alert any relatives of their risk has become part of standard practice and has gone relatively unquestioned over the years. Communication with at-risk relatives will become an increasingly pressing issue as mainstream and routine practice incorporates broad genome tests and as the number of findings potentially relevant to relatives increases. This study therefore explores problems around the use of family letters to communicate about genetic risk. We conducted 16 focus groups with 80 HCPs, and 35 interviews with patients, recruited from across the UK. Data were analyzed thematically and we constructed four themes: 1) HCPs writing family letters: how to write them and why?, 2) Patients’ issues with handing out family letters, 3) Dissemination becomes an uncontrolled form of communication, and 4) When the relative has the letter, is the patient’s and HCP’s duty discharged? We conclude by suggesting alternative and supplementary methods of communication, for example through digital tools, and propose that in comparison to communication by family letter, direct contact by HCPs might be a more appropriate and successful option

Inclusion, social networks and resilience: strategies, practices and outcomes for disabled children and their families

This paper explores the strategies of service providers and the benefits reported by disabled children and their parents/carers in three Children's Fund programmes in England. Based on National Evaluation of the Children's Fund research, we discuss how different understandings of ‘inclusion’ informed the diverse strategies and approaches service providers adopted. While disabled children and families perceived the benefits of services predominantly in terms of building individual children's resilience and social networks, the paper highlights the need for holistic approaches which have a broad view of inclusion, support children's networks and tackle disabling barriers within all the spheres of children's lives

Evaluation of Birmingham City Council's Step Down Programme: report of the preliminary findings January 2017

The Step Down Programme is a partnership between Birmingham City Council and Core Assets which started in July 2014 to bring young people out of residential homes into foster placements. It is underpinned by a Social Impact Bond contract, funded by Bridges Ventures, a social investor who wants to make a difference for children and young people. They pay the additional cost of the service on top of the element that Birmingham City Council can meet. Provided the young person stays in a placement for 52 weeks, the social investor receives the payments from Birmingham City Council to cover the cost of the service that they have funded and to generate a return for their investors. At the start of December 2016, 20 placements had been made via the Step-Down Programme (19 young people as one was placed twice). Thirteen placements were made in year one (Nov 2014-Oct 2015) and seven in year two (Nov 2015 - Oct 2016). Eight had graduated and six were in current Step Down placements (including two for whom the clock had restarted due to moves within the second six months of their placement). Five placements disrupted before week 14 interviews. One placement disrupted after week 14 interviews. The data in this report is based on the analysis of the quantitative information collected by Core Assets within the service delivery and 113 interviews with young people, their carers, children's and supervising social workers and the mentors (or support worker when no mentor was appointed). Interviews following placement disruptions were held only with foster carers and social workers

Evaluation of Birmingham City Council's Step Down Programme: report of the preliminary findings January 2017

The Step Down Programme is a partnership between Birmingham City Council and Core Assets which started in July 2014 to bring young people out of residential homes into foster placements. It is underpinned by a Social Impact Bond contract, funded by Bridges Ventures, a social investor who wants to make a difference for children and young people. They pay the additional cost of the service on top of the element that Birmingham City Council can meet. Provided the young person stays in a placement for 52 weeks, the social investor receives the payments from Birmingham City Council to cover the cost of the service that they have funded and to generate a return for their investors. At the start of December 2016, 20 placements had been made via the Step-Down Programme (19 young people as one was placed twice). Thirteen placements were made in year one (Nov 2014-Oct 2015) and seven in year two (Nov 2015 - Oct 2016). Eight had graduated and six were in current Step Down placements (including two for whom the clock had restarted due to moves within the second six months of their placement). Five placements disrupted before week 14 interviews. One placement disrupted after week 14 interviews. The data in this report is based on the analysis of the quantitative information collected by Core Assets within the service delivery and 113 interviews with young people, their carers, children's and supervising social workers and the mentors (or support worker when no mentor was appointed). Interviews following placement disruptions were held only with foster carers and social workers

Involving children and young people in the development of art-based research tools.

In this article, the authors describe how they worked with children and young people to develop art-based techniques and activities for use in a study exploring family communication about genetic conditions. It highlights key methodological issues about children and young people's participation in research, the concept of what constitutes an art-based activity and how this was applied to developing art-based data collection tools