Caregiving at the end of life:perspectives from spousal caregivers and care recipients.

OBJECTIVE: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care. METHODS: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience. RESULTS: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care. SIGNIFICANCE OF RESULTS: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Optimizing Research on End-of-Life Care for Seniors:The Collective New Emerging Team on End of Life Care for Seniors University of Ottawa, Institute of Palliative Care

Background: End-of-life care for seniors is an important and neglected area of research. The University of Ottawa Institute of Palliative Care has expanded its research capacity by developing a Canadian Institutes of Health Research (CIHR) funded new emerging team on end-of-life care for seniors. This initiative brings together an interdisciplinary team of researchers from palliative care and geriatrics to develop a comprehensive program of research. Methods: 1) A variety of investigators from the fields of palliative care and geriatrics and disciplines of epidemiology, medicine, nursing, psychology and social work will collaborate on the development of a research agenda focussed on end-of-life care for seniors. 2) The conceptual model for the research program consists of 4 broad interrelated domains that are congruent with the CIHR themes of health services, clinical issues, population health and psychosocial, cultural, spiritual and ethical issues; this framework will guide the research program and all studies emanating from the program. 3) Research studies will focus on 5 areas of inquiry that are central to end-of-life care for seniors: palliative end-of-life care for rural seniors, care settings, burden, role of volunteers, and delirium. Results: This new team has the potential to obtain peer-reviewed funding, recruit and train a new generation of researchers, and build a network of concerned researchers. Conclusions: The new team should ultimately contribute to an improved quality of care for seniors who are approaching death.

Research Review: Teenage pregnancy and parenthood: the role of fathers

From the research available in America and Britain it would appear that the men who father children by teenage mothers tend to be a few years older than their teenage partners, although a minority may be significantly older. With regard to the factors associated with fatherhood there are striking similarities to the literature on teenage mothers. Like teenage mothers young fathers tend to be from low socio-economic backgrounds, experience lower educational attainment and fewer employment opportunities than their childless peers. Similarly they tend to experience greater psychological and emotional difficulties and may have a history of delinquent behaviour.

These young fathers are involved in a variety of relationships with teenage mothers, few of which result in marriage and many of which result in the breakdown of cohabitation or the termination of the relationship. This pattern of increasing relationship breakdown over time is related to decreasing paternal contact with children in both America and Britain. Often conflictual relationships with teenage mothers or maternal grandparents and a lack of financial resources are cited by young fathers as barriers to their continued involvement and contact with their children. However, the mothers are much more likely to cite paternal disinterest as the reason for a lack of paternal involvement and there is some indication that mothers and fathers have different views on the level of practical involvement expected from fathers. While most of quantitative data on the subject provides a rather negative picture of paternal involvement, qualitative research highlights how many young fathers genuinely want to be involved with their children and would have more contact and input if they could.

While much less is known about the support provided to young fathers in comparison with their female counterparts, there is some suggestion that the support and role expectations provided by the paternal grandmother may influence how involved young fathers are. There is also some indication that a sizeable minority of young men may receive no such support from their family and may also be treated with hostility or ignored by the maternal grandparents. Young fathers also report limited or no contact with midwives, health visitors and social workers.

Factors affecting collaboration between general practitioners and community pharmacists:a qualitative study

Although general practitioners (GPs) and community pharmacists (CPs) are encouraged to collaborate, a true collaborative relationship does not exist between them. Our objective was to identify and analyze factors affecting GP-CP collaboration.

How young people cope with chronic kidney disease:Literature review

Background: Chronic kidney disease (CKD) is a complex, long-term condition occurring in all age groups. It has been reported that the incidence of renal replacement therapy in young people is 7-8 per million population. Notwithstanding those individuals who may receive a donor kidney, many individuals may be disenfranchised by perceptions of helplessness and feelings of powerlessness against a backdrop of diminished health outlook, consequently impacting on capacity for effective coping. Aim: The aim of this review is to explore how young people cope with CKD. Methods: Three hundred and thirty-seven abstracts were identified. Sixty-three papers were cross-examined using a Critical Appraisal Skills Checklist Tool. Results: Young people face various demands; these may be episodic or ongoing, depending on health and circumstance. The themes this review uncovers are: 'Lack of a Coping Definition'; 'Coping Strategies in Young People'; and 'Barriers to the Understanding of Coping in Young People'. Conclusion: More qualitative research is vital to retrieve 'real-life' perceptions from young people coping with kidney disease to identify how care should be made more explicit for them. © 2012 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Gender implications of UK welfare reform and government equality duties: evidence from qualitative studies

The UK coalition government is bound by equality duties to have regard to the impact of its policies on various groups, including women. This article investigates how far this legislative commitment is influencing debates about current welfare reforms, especially plans for ‘universal credit’ (a new means-tested benefit).
The authors draw on findings from recent studies of within-household distribution from a gender perspective, including in particular their own qualitative research involving separate semi-structured interviews with men and women in 30 low/moderate-income couples in Britain. A major aim of this research was to facilitate more nuanced analysis of the effects of welfare reforms in terms of gender roles and relationships within the household.
This article therefore explores how far these findings, together with key principles for assessing the gender impact of welfare reforms, can be used to assess ‘universal credit’, and to what extent they influenced the UK government’s proposals and analysis.

A systematic review protocol on the use of online learning and blended learning for teaching clinical skills to undergraduate health professional students

Aim: This paper is a review protocol that will be used to identify, critically appraise and synthesize the best current evidence relating to the use of online learning and blended learning approaches in teaching clinical skills in undergraduate nursing.

Background: Although previous systematic reviews on online learning versus face to face learning have been undertaken (Cavanaugh et al. 2010, Cook et al. 2010), a systematic review on the impact of online learning and blended learning for teaching clinical skills has yet to be considered in undergraduate nursing. By reviewing nursing students’ online learning experiences, systems can potentially be designed to ensure all students’ are supported appropriately to meet their learning needs.

Methods/Design: The key objectives of the review are to evaluate how online-learning teaching strategies assist nursing students learn; to evaluate the students satisfaction with this form of teaching; to explore the variety of online-learning strategies used; to determine what online-learning strategies are more effective and to determine if supplementary face to face instruction enhances learning. A search of the following databases will be made MEDLINE, CINAHL, BREI, ERIC and AUEI. This review will follow the Joanna Briggs Institute guidance for systematic reviews of quantitative and qualitative research.

Conclusion: This review intends to report on a combination of student experience and learning outcomes therefore increasing its utility for educators and curriculum developers involved in healthcare education.

Doing Focus Groups and Interviews with Recent Migrants to Northern Ireland: A Dynamic Interplay of Ethics, Language and Access

This case describes a qualitative social science research project that was conducted in 2009 and that examined the experiences of recent migrants to Northern Ireland. While background to the research and key findings are presented, the topic forms a backdrop to the case. The following aspects of the study are presented: the theoretical context; formulating the research question, design and methodology; key methodological issues; data collection and analysis; project dissemination; and research funding and reporting. The case pays particular attention to the needs and impact of different groups including the researcher, the funding body, the researcher’s employer and the researched. The significance of access, language and ethics to this study are examined. Finally, the way in which the research unfolded in an often-unpredictable way throughout the implementation process is highlighted in the narrative.

Digital pathology and image analysis in tissue biomarker research

Digital pathology and the adoption of image analysis have grown rapidly in the last few years. This is largely due to the implementation of whole slide scanning, advances in software and computer processing capacity and the increasing importance of tissue-based research for biomarker discovery and stratified medicine. This review sets out the key application areas for digital pathology and image analysis, with a particular focus on research and biomarker discovery. A variety of image analysis applications are reviewed including nuclear morphometry and tissue architecture analysis, but with emphasis on immunohistochemistry and fluorescence analysis of tissue biomarkers. Digital pathology and image analysis have important roles across the drug/companion diagnostic development pipeline including biobanking, molecular pathology, tissue microarray analysis, molecular profiling of tissue and these important developments are reviewed. Underpinning all of these important developments is the need for high quality tissue samples and the impact of pre-analytical variables on tissue research is discussed. This requirement is combined with practical advice on setting up and running a digital pathology laboratory. Finally, we discuss the need to integrate digital image analysis data with epidemiological, clinical and genomic data in order to fully understand the relationship between genotype and phenotype and to drive discovery and the delivery of personalized medicine.

Research Ethics in Divided and Violent Societies: Seizing the Ethical Opportunity

This chapter explores how to conduct social research in divided and violent societies by developing the concept of the ‘ethical opportunity’. The ‘ethical opportunity’ is situated in a brief discussion of ‘action’ and feminist approaches to research. It argues that seizing the ethical opportunity requires researchers to: plan for their personal safety, plan for participants’ personal safety and plan how they will communicate and disseminate their results. It draws on the author’s personal experience researching in South Africa, Zimbabwe and Northern Ireland, concluding that it is in the communication and dissemination phase that researchers’ hopes for ‘making a difference’ may be realised or dashed. It cautions would-be researchers to manage their own – and research participants’ – expectations about what social research can achieve. Its effects may not often be as transforming and liberating as idealistic researchers hope for, but that should not dissuade them from striving towards those ends.

Cancer and serious mental illness – patient, caregiver and professional perspectives: study protocol

Aim: To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and healthcare professionals involved in their care. Background: Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals and there is little evidence regarding the experiences of patients and caregivers.Design: A qualitative exploration using approximately 36 semi-structured interviews.Methods: Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. Discussion: There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care.

Teenagers' Perceptions and Experiences of Belfast as a Divided City

In this ‘research project’ case study, we provide an empirical example of how quantitative and qualitative methods were combined within a single study and discuss some of the strengths and weaknesses of our combined methodology which included questionnaires, photo-prompts and focus-group interviews. Our intention in using mixed methods was to enhance understandings of the meanings of space, place and territory on the everyday lives of young people growing up in Belfast. How do young people negotiate space in politically divided cities such as Belfast? Is territory important, and if so, why is it important? How do we construct an appropriate and relevant study design that can not only describe, but explain what place, space and territory mean to young people, and more importantly, how it impacts on their everyday lives? How useful is it to apply a mixed-methods approach to finding answers to these questions? We explain why and how we used a mixed-methods approach and illuminate some of the issues we encountered. We demonstrate how mixed methods can provide not just complementary but also new insights into the topic under investigation. We hope that the case study encourages you to experiment, or at least consider, the potential of using mixed methods.

Emotions and identity in the figured world of becoming a doctor

CONTEXT: There is little room in clerkship curricula for students to express emotions, particularly those associated with the development of a caring identity. Yet it is recognised that competence, alone, does not make a good doctor. We therefore set out to explore the relationship between emotions and identity in clerkship education. Our exploration was conceptually oriented towards Figured Worlds theory, which is linked to Bakhtin's theory of dialogism.

METHODS: Nine female and one male member of a mixed student cohort kept audio-diaries and participated in both semi-structured and cognitive individual interviews. The researchers identified 43 emotionally salient utterances in the dataset and subjected them to critical discourse analysis. They applied Figured Worlds constructs to within-case and cross-case analyses, supporting one another's reflexivity and openness to different interpretations, and constantly comparing their evolving interpretation against the complete set of transcripts.

RESULTS: Students' emotions were closely related to their identity development in the world of medicine. Patients were disempowered by their illnesses. Doctors were powerful because they could treat those illnesses. Students expressed positive emotions when they were granted positions in the world of medicine and were able to identify with the figures of doctors or other health professionals. They identified with doctors who behaved in caring and professionally appropriate ways towards patients and supportively towards students. Students expressed negative emotions when they were unable to develop their identities.

CONCLUSIONS: Critical discourse analysis has uncovered a link between students' emotions and their identity development in the powerful world of becoming and being a doctor. At present, identity development, emotions and power are mostly tacit in undergraduate clinical curricula. We speculate that helping students to express emotions and exercise power in the most effective ways might help them to develop caring identities.

Maths anxiety in psychology undergraduates: A mixed-methods approach to formulating and implementing interventions

A key challenge to educators in disciplines that, while not maths based, nevertheless
contain some maths component, is mathematics anxiety. Over the years, a number of
intervention strategies have been tested, seeking reduce maths anxiety in undergraduates.
Many of these studies, however, contain methodological issues that challenge their validity. It
is also unclear how many of these studies decide which type of interventions to use. This
research sought to correct both of these issues. In Study 1, focus groups were carried out to
explore which interventions students believed would most likely reduce their maths anxiety.
Study 2 implemented those interventions that Study 1 showed to be practical and potentially
effective, utilising a large sample of Year 1 and Year 2 psychology undergraduates,
controlling for potential methodological confounds. Results showed that only one
intervention (teaching quantitative research methods using real-life examples) had any
significant effect on maths anxiety, and this was slight. These results, while not impressive by
themselves, do suggest ways in which larger-scale interventions could seek to proceed in
terms of reducing maths anxiety.