The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis

Aims and objectives: To draw out the similar complexities faced by staff around
truth-telling in a children’s and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling.

Background: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff.

Design: Secondary analysis of data using a supra-analysis design to identify commonality of experiences.

Methods: Secondary ‘supra-analysis’ was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children’s and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies.

Results: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence.

Conclusions: Both children’s and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff.

Relevance to clinical practice: There remains a powerful death-denying culture in
many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

Waste Management and Sustainability during the Design Phase of a Construction Project: A Qualitative Review

Waste management and sustainability are two core underlying philosophies that the construction sector must acknowledge and implement; however, this can prove difficult and time consuming. To this end, the aim of this paper is to examine waste management strategies and the possible benefits, advantages and disadvantages to their introduction and use, while also to examine any inter-relationship with sustainability, particularly at the design stage. The purpose of this paper is to gather, examine and review published works and investigate factors which influence economic decisions at the design phase of a construction project. In addressing this aim, a three tiered sequential research approach is adopted; in-depth literature review, interviews/focus groups and qualitative analysis. The resulting data is analyzed, discussed, with potential conclusions identified; paying particular attention to implications for practice within architectural firms. This research is of importance, particularly to the architectural sector, as it can add to the industry’s understanding of the design process, while also considering the application and integration of waste management into the design procedure. Results indicate that the researched topic had many advantages but also had inherent disadvantages. It was found that the potential advantages outweighed disadvantages, but uptake within industry was still slow and that better promotion and their benefits to; sustainability, the environment, society and the industry were required.

Identifying solutions to increase participation in physical activity interventions within a socio-economically disadvantaged community: a qualitative study

Background: There is an urgent need to increase population levels of physical activity, particularly amongst those who are socio-economically disadvantaged. Multiple factors influence physical activity behaviour but the generalisability of current evidence to such ‘hard-to-reach’ population subgroups is limited by difficulties in recruiting them into studies. Also, rigorous qualitative studies of lay perceptions and perceptions of community leaders about public health efforts to increase physical activity are sparse. We sought to explore, within a socio-economically disadvantaged community, residents’ and community leaders’ perceptions of physical activity (PA) interventions and issues regarding their implementation, in order to improve understanding of needs, expectations, and social/environmental factors relevant to future interventions.

Methods: Within an ongoing regeneration project (Connswater Community Greenway), in a socio-economically disadvantaged community in Belfast, we collaborated with a Community Development Agency to purposively sample leaders from public- and voluntary-sector community groups and residents. Individual semi-structured interviews were conducted with 12 leaders. Residents (n=113), of both genders and a range of ages (14 to 86 years) participated in focus groups (n=14) in local facilities. Interviews and focus groups were recorded, transcribed verbatim and analysed using a thematic framework.

Results: Three main themes were identified: awareness of PA interventions; factors contributing to intervention effectiveness; and barriers to participation in PA interventions. Participants reported awareness only of interventions in which they were involved directly, highlighting a need for better communications, both inter- and intra-sectoral, and with residents. Meaningful engagement of residents in planning/organisation, tailoring to local context, supporting volunteers, providing relevant resources and an ‘exit strategy’ were perceived as important factors related to intervention effectiveness. Negative attitudes such as apathy, disappointing experiences, information with no perceived personal relevance and limited access to facilities were barriers to people participating in interventions.

Conclusions: These findings illustrate the complexity of influences on a community’s participation in PA interventions and support a social-ecological approach to promoting PA. They highlight the need for cross-sector working, effective information exchange, involving residents in bottom-up planning and providing adequate financial and social support. An in-depth understanding of a target population’s perspectives is of key importance in translating PA behaviour change theories into practice.

Adolescents' views about a proposed rewards intervention to promote healthy food choice in secondary school canteens

Using rewards may be an effective method to positively influence adolescent eating behaviour, but evidence regarding this approach is limited. The aim of this study was to explore young adolescent views about a proposed reward intervention associated with food choice in school canteens. Focus groups were held in 10 schools located in lower socioeconomic areas within Northern Ireland and involved 90 pupils aged 11-12 years (54 girls, 36 boys). Our findings indicated a high degree of acceptability for a reward scheme but there was major diversity in the type of rewards valued by pupils, largely defined by geographical area and socio-cultural differences. Pupils from rural areas tended to emphasize group-based and longer-term rewards, whereas pupils from urban-city schools tended to suggest individualistic and immediate rewards. The major factors influencing food choice were food price, value for money, taste and visual appearance. Pupils felt that factors outside of their control, such as being assigned to the second lunch sitting placed considerable constraints on their food choice. This research not only indicated a high degree of acceptability for a rewards-based intervention but also highlighted a number of socio-cultural and environmental factors that should be considered by researchers when developing such an intervention.

Children's views on microneedle use as an alternative to blood sampling for patient monitoring

Objectives: To explore children's views on microneedle use for this population, particularly as an alternative approach to blood sampling, in monitoring applications, and so, examine the acceptability of this approach to children.

Methods: Focus groups were conducted with children (aged 10-14 years) in a range of schools across Northern Ireland. Convenience sampling was employed, i.e. children involved in a university-directed community-outreach project (Pharmacists in Schools) were recruited.

Key findings: A total of 86 children participated in 13 focus groups across seven schools in Northern Ireland. A widespread disapproval for blood sampling was evident, with pain, blood and traditional needle visualisation particularly unpopular aspects. In general, microneedles had greater visual acceptability and caused less fear. A patch-based design enabled minimal patient awareness of the monitoring procedure, with personalised designs, e.g. cartoon themes, favoured. Children's concerns included possible allergy and potential inaccuracies with this novel approach; however, many had confidence in the judgement of healthcare professionals if deeming this technique appropriate. They considered paediatric patient education critical for acceptance of this new approach and called for an alternative name, without any reference to 'needles'.

Conclusions: The findings presented here support the development of blood-free, minimally invasive techniques and provide an initial indication of microneedle acceptability in children, particularly for monitoring purposes. A proactive response to these unique insights should enable microneedle array design to better meet the needs of this end-user group. Further work in this area is recommended to ascertain the perspectives of a purposive sample of children with chronic conditions who require regular monitoring. © 2013 Royal Pharmaceutical Society.

Learning fluid prescription skills: why is it so challenging?

IIt is well recognised that medical students and junior doctors find fluid prescription a challenging topic. This study was designed to gain a greater understanding of the experiences that medical students face related to learning about fluid prescribing. Methods: A qualitative approach, using focus groups, was employed in this research. Final-year medical students in academic year 2011-12 at Queen's University Belfast were invited to participate during their 'Assistantship' placement in March 2012. Discussions in focus groups, consisting of between six and eight students, were recorded and transcribed verbatim. The research team, consisting of three separate investigators, conducted thematic analysis independently. A final consensus regarding emerging themes was reached by discussion within the whole research team. Medical students and junior doctors find fluid prescription a challenging topic Results: Five prominent themes emerged: 'Teaching experience: a disruptive variation'; 'Curricular disconnections'; 'The driving test: Theory-practice transformation'; 'Role modelling: which standard to aspire to?'; and finally 'Reconciling the perceived risk'. Discussion: This re search provided insights into medical students' opinions of the teaching practices and learning experiences related to fluid prescribing. The learning of prescribing skills is complex andcontextual. In the development of such skills, medical students are often exposed to conflicting educational experiences that challenge the novicelearner in making judgements on best prescribing practice. This study adds to the body of evidence that fluid prescription is a difficult topic, and has generated a number of multifaceted and strategic recommendations to potentially improve fluid prescription teaching.

Better together: Interprofessional Education in Medication Safety

Background: The importance of actively working with other professionals, as part of a single team, is well embedded in discussions relating to effective healthcare. The need for effective teamwork specifically in relation to patient safety is also widely acknowledged; however healthcare has traditionally been poor at building teams and professional groups tend to function semi-autonomously and autocratically.1
Objective: This study aims to gain the views and experiences of students from nursing, pharmacy and medicine involved in an interprofessional workshop in medication safety.
Setting and methods: Interprofessional workshops involving students from nursing, pharmacy and medicine were delivered using case studies involving medication incidents. Focus groups were used to investigate participant’s views and experiences of the workshop.
Results: Focus groups were completed with 22 students. Five main themes were identified from the focus group data relating to medication safety; these were increasing confidence, insight into roles, improving skills, culture of responsibility and application to future practice.
Conclusions: This study represents a model for delivery of training that has demonstrated improvement in the students’ attitudes towards team working and is a first step towards introducing team working into the medication safety program. The programme continues to run using live and virtual workshops.

1. Leape LL. A systems analysis approach to medical error. J Clin Eval Clin Pract. 1997. 3, 3, 213-222.

Beneficiary accountability in NGOs: can it be better in donor funded projects as compared to non-donor funded projects?

Prior research on NGO accountability argued that in the process of upward accountability to donors NGOs’ accountability towards beneficiaries had been compromised. With a focus on beneficiary accountability this paper undertakes a comparative examination of a donor funded project and a non-donor funded project. The study has been carried out in the context of a large Bangladeshi NGO with international operations. While the above conclusion on NGO accountability generally holds our study shows a somewhat different picture. Drawing on a comprehensive set of empirical evidence from various sources such as documentary analysis, interviews, focus groups and observations we show that beneficiary accountability can be better in donor funded projects as compared to non-donor funded projects. We theorise the circumstances under which it can happen. This finding has significant implications for the policy makers and donors in the context of recent drive for the self-sustainability of NGOs and its impact on the crucial issue of beneficiary accountability.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

Echoes of the future: Adults with disabilities living at home with their parents

Almost 90% of all adult sons and daughters with disabilities live at home with their parents. Consequently, they have life experiences that are atypical for most of their adult peers and their aging caregivers are under stress due to failing health, financial pressures, bereavement, and worry about the future.

Adults with intellectual disabilities and aging parents took part in focus groups and interviews. results show a loving and caring home environment but evidence a lack of effective life skills development and futures planning. the paper draws attention to the inevitable crisis that occurs when aging caregivers are no longer able to care. The urgent need for skill development and timely futures planning is outlined.

The Social and Economic Mobility of Ethnic Minority Communities in Northern Ireland

This report provides evidence of the degree, nature and drivers of poverty across the different ethnic minority groups in Northern Ireland. The 2011 Census highlighted some very different outcomes for ethnic minority groups in Northern Ireland across various indicators related to poverty. Through focus groups and interviews with employees and employers, this study further reveals how far the labour market is segmented among different ethnic minority communities. It also reviews government legislation and strategies relevant to Northern Ireland and the impact of these on poverty among ethnic minority groups. The report: • highlights employees’ difficulties in accessing relevant employment; • investigates employers’ procedures for recruitment, staff retention and development; • outlines government initiatives and programmes to support employees; and • reviews the level of uptake and success of government support for ethnic minority groups seeking employment or setting up a business.

Poverty, ethnicity and international migrants to Northern Ireland: New opportunities or new vulnerabilities?

This briefing provides a brief overview of recent patterns and processes of migration to Northern Ireland and to identify the major challenges arising for society. It is based on primary research conducted by the author during 2013 that consisted mainly of focus groups and interviews with individual migrants. This briefing paper proceeds as follows: it identifies the key features of recent migration to Northern Ireland before presenting evidence from the research to show the experiences of migrants in the labour market. The key policy questions to be considered will be the role of the state and civil society for building positive inter-group relations and the opportunities that exist for migrants to achieve economic and social mobility.

Factors influencing European consumer uptake of personalised nutrition. Results of a qualitative analysis.

The aim of this research was to explore consumer perceptions of personalised nutrition and to compare these across three different levels of "medicalization": lifestyle assessment (no blood sampling); phenotypic assessment (blood sampling); genomic assessment (blood and buccal sampling). The protocol was developed from two pilot focus groups conducted in the UK. Two focus groups (one comprising only "older" individuals between 30 and 60 years old, the other of adults 18-65 yrs of age) were run in the UK, Spain, the Netherlands, Poland, Portugal, Ireland, Greece and Germany (N = 16). The analysis (guided using grounded theory) suggested that personalised nutrition was perceived in terms of benefit to health and fitness and that convenience was an important driver of uptake. Negative attitudes were associated with internet delivery but not with personalised nutrition per se. Barriers to uptake were linked to broader technological issues associated with data protection, trust in regulator and service providers. Services that required a fee were expected to be of better quality and more secure. An efficacious, transparent and trustworthy regulatory framework for personalised nutrition is required to alleviate consumer concern. In addition, developing trust in service providers is important if such services to be successful. (C) 2013 Elsevier Ltd. All rights reserved.

Uncovering the challenges of managing cachexia in advanced cancer: Preliminary results from semi-structured interviews with healthcare professionals in a regional cancer centre

Background: Cancer cachexia is a complex metabolic syndrome characterised by severe and progressive weight loss which is predominantly muscle mass. It is a devastating and distressing complication of advanced cancer with profound bio-psycho-social implications for patients and their families. At present there is no curative treatment for cachexiain advanced cancer therefore the most important healthcare response entails the minimisation of the psycho-social distress associated with it. However the literature suggests healthcare professionals’are missing opportunities to intervene and respond to the multi-dimensional needs of this population.

Objective:The objective of this study was to explore healthcare professionals’ response to cachexia in advanced cancer.

Methods: An interpretative qualitative approach was adopted in this study. A purposive sample of doctors, nurses, specialist nurses and dieticians were recruited from a regional cancer centre between November 2009 and November 2010. Data was collection was twofold: two multi-professional focus groups were conducted first to uncover the main themes and issues in cachexia management. This data then informed the interview schedule for the following 25 individual semi-structured interviews.

Results: Preliminary data analysis of the semi-structured interviews revealed distinct differences between disciplines in their perceptions of cancer cachexia which influenced their response to it in clinical practice. The commonality between disciplines, with the exception of palliative care, was a reliance on the biomedical approach to cancer cachexia management.

Discussion and Conclusions: Cancer cachexia is a complex and challenging syndrome which needs to be addressed from a holistic model of care to reflect the multi-dimensional needs of this patient group. The perspectives of those involved in care delivery is required in order to inform the development of interventions aimed at minimising the distress associated with this devastating syndrome.