Economic cost of age-related macular degeneration: a review of recent research

As the population of most developed countries ages so the prevalence of diseases such as age-related macular degeneration (AMD) are likely to increase. To facilitate planning and informed debate regarding making provisions for this disease it is important that we have a clear understanding of the economic impact of visual impairment associated with AMD. In this paper we assess the state of current knowledge based on a review of published evidence in scientific journals. Based on our assessment of the evidence we argue that the paucity of research studies on the subject and wide variation in estimates produced from the few studies available make it difficult to assess with confidence the likely average direct cost-of-illness associated with AMD. We further argue that significant gaps in our understanding of the costs of AMD (particularly in respect of indirect costs) also exist. Current research should be augmented by more comprehensive studies.

The impact of adversity in childhood on outcomes in adulthood: research lessons and limitations

Summary: Current UK Government policy is concerned with the possible connections between childhood adversity, social exclusion and negative outcomes in adulthood. Understanding the impact of adverse childhood experiences on outcomes in adulthood is therefore key to informing effective policy and practice. In this article, the research on the impact of childhood adversity on outcomes in adulthood is reviewed in the broad categories of: mental health and social functioning; physical health; offending; service use; and economic impact. The literature on resilience that focuses on those who experience adversity, but do not have associated negative outcomes is also briefly considered. The strengths and limitations of the range of research methods used are then examined. Findings: Previous studies have tended to focus on specific forms of adversity, predominantly abuse and neglect, and either: specific populations and specific outcomes; specific populations and general outcomes; or general populations and specific outcomes. This means there may be incomplete understanding of the inputs (the range of adverse experiences in childhood), the processes (how these may affect people) and the outcomes (across domains in adulthood). Applications: It is concluded that it is important for social work researchers to engage in the current debate about how to prevent harmful childhood adversity and there is an important gap in the research for more interdisciplinary large-scale general population studies that consider the full range of childhood adversity and associated impacts across time and the possible processes involved.

Civil society as a contested field of meanings

Purpose – During recent years, the concept of civil society, particularly global civil society, has come to the fore in both academia and policy circles. A key component of recent theoretical and policy research is the attempt to do international comparative research on the meaning of civil society. The purpose of this paper is to argue that the language and the terminology used to describe the agents of civil society are reflective of cultural and historical contexts of societies, have distinct meanings and cannot be used interchangeably.

Design/methodology/approach – In different national contexts, the key agents of civil society are referred to differently; nonprofit sector, voluntary and community sector, third sector and social economy. In comparative studies, scholars often list these concepts to indicate that they recognise that the agents of civil society are referred to differently in different societies. The article offers a socio-historical analysis of each concept. It is concluded that teasing out the differences, as well as the similarities, between the nonprofit sector, voluntary and community sector, third sector and social economy, is crucial to robust comparative research on civil society.

Findings – This paper exposes a number of limitations of each of the terminologies used to describe civil society. They all present a much more limiting notion of civil society than that proposed by the founding fathers. None seem to capture the range of civil associations in any society. Yet, assumptions are made that the terminologies used have similar meanings rather than attempting to clarify and define exactly what is being written or described. This is exacerbated by the interchangeable usage of nonprofit/third sector/community and voluntary sector/social economy. In order to progress beyond culturally specific understandings of civil society, it is necessary to examine the terminology used and how it emanates from a specific cultural and political context. Having a clear understanding of the language used and what it signifies is crucial to robust cross-national comparative research.

Originality/value – This paper examines context specific understandings of civil society and the terminology used to define it; a question not previously addressed. It is hoped that this article will generate much needed further debate on cross-national meanings of civil society.

A Review of Demographic Ageing in the UK: Opportunities for Rural Research

Demographic ageing is a global phenomenon. UK policy and research have, until recently, focused on national trends and implications and largely viewed ageing as a 'pensions and care' problem. While other and more positive aspects are beginning to be acknowledged, regional, local, and rural impacts remain underinvestigated. This paper, by reviewing the literature from several disciplines and countries, introduces a series of research questions that could usefully inform future geographical inquiry. It argues that the nature, experiences, and consequences of demographic ageing will vary across space, stage in the life course and numerous aspects of our everyday lives. Our current knowledge and understanding are but the tip of the iceberg in terms of the research opportunities that lie ahead.

On the Problems of Mixing RCTs with Qualitative Research: The Case of the MRC Framework for the Evaluation of Complex Healthcare Interventions

In the perceived hierarchy of research designs, the results from randomized controlled trials are considered to provide the highest level of evidence. Indeed these trials have been upheld as the gold standard in research. The benefits and limitations of the randomized controlled trial as a method of evaluating the effectiveness of healthcare interventions are presented. The article then examines the different levels of complexity within healthcare interventions and the problems this poses in determining effectiveness. In an effort to provide a solution to this problem, the Medical Research Council produced a framework to assist investigators to develop and evaluate complex healthcare interventions. The framework is described with reference to an example of implementing and evaluating protocols for weaning patients in the intensive care unit. The framework is critiqued on the basis that it involves an ambiguous or contradictory ontology, which fails to articulate the relationship between the positivism of randomized controlled trials with the relativism of qualitative approaches. It is concluded that the use of realist strategies in combination with randomized controlled trials provides the most coherent solution to this quandary

Turning the tide: A critique of Natural Semantic Metalanguage from a translation studies perspective

Starting from the premise that human communication is predicated on translational phenomena, this paper applies theoretical insights and practical findings from Translation Studies to a critique of Natural Semantic Metalanguage (NSM), a theory of semantic analysis developed by Anna Wierzbicka. Key tenets of NSM, i.e. (1) culture-specificity of complex concepts; (2) the existence of a small set of universal semantic primes; and (3) definition by reductive paraphrase, are discussed critically with reference to the notions of untranslatability, equivalence, and intra-lingual translation, respectively. It is argued that a broad spectrum of research and theoretical reflection in Translation Studies may successfully feed into the study of cognition, meaning, language, and communication. The interdisciplinary exchange between Translation Studies and linguistics may be properly balanced, with the former not only being informed by but also informing and interrogating the latter.

From theory to practice:Improving the impact of health services research

Background: While significant strides have been made in health research, the incorporation of research evidence into healthcare decision-making has been marginal. The purpose of this paper is to provide an overview of how the utility of health services research can be improved through the use of theory. Integrating theory into health services research can improve research methodology and encourage stronger collaboration with decision-makers. Discussion: Recognizing the importance of theory calls for new expectations in the practice of health services research. These include: the formation of interdisciplinary research teams; broadening the training for those who will practice health services research; and supportive organizational conditions that promote collaboration between researchers and decision makers. Further, funding bodies can provide a significant role in guiding and supporting the use of theory in the practice of health services research. Summary: Institutions and researchers should incorporate the use of theory if health services research is to fulfill its potential for improving the delivery of health care. © 2005 Brazil et al; licensee BioMed Central Ltd.

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.

Who's minding the shop?:the role of Canadian research ethics boards in the creation and uses of registries and biobanks

Abstract. Background. The amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and biobanks. Methods. Chairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank. Results. There was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied. Conclusion. Participants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher level of concern regarding biobanks. As registries and biobanks expand, there is a need for critical analysis of suitable roles for REBs and subsequent guidance on these topics. The authors conclude by recommending REB participation in the creation of registries and biobanks and the eventual drafting of comprehensive legislation.

Cross‐national mentoring NGOs in transition societies: Field research and developments in Bulgaria

Non‐governmental organizations (NGOs) in societies undergoing socio‐economic transition are widely regarded as central to building a civil society that encourages democracy. At the moment, the Bulgarian civil society depends greatly on foreign funding whilst NGOs are unable to empower their beneficiaries in decision‐making. Given this reality, are cross‐national NGO partnerships able to strengthen organisations? What kinds of support are on offer, what kinds of (inter) dependency relations occur and to what extent do NGOs model their management practices on their mentor and with what results?
This paper sets out to situate these questions in the context of a proposed theoretical construct, organizational mentoring, which occurs where national or local organisations have access to and support of well‐established NGOs abroad. The model is constructed on the findings of a qualitative case study conducted in Bulgaria on the development of a Bulgarian NGO and its relationship with a UK NGO. This is preceded by a discussion on selected literature reflecting the meaning of transition, change in societal values and organizational practices in Eastern Europe, and the development of voluntary sector organizations in transforming countries. The theoretical model proposed here is relevant in providing a systematic discussion on organizational change towards a more enlightened engagement between civil society organizations in cross‐national partnerships. Such discussion has implications for the development of hybrid forms of coexistence between Eastern and Western European partners reflected in their interdependent organizational practices.

Where are all the men? The marginalization of men in social scientific research on infertility

There is a wealth of research exploring the psychological consequences of infertility and assisted reproduction technology: a substantial body of sociological and anthropological work on ‘reproductive disruptions’ of many kinds and a small but growing literature on patient perspectives of the quality of care in assisted reproduction. In all these fields, research studies are far more likely to be focused on the understandings and experiences of women than those of men. This paper discusses reasons for the relative exclusion of men in what has been called the ‘psycho-social’ literature on infertility, comments on research on men from psychological and social perspectives and recent work on the quality of patient care, and makes suggestions for a reframing of the research agenda on men and assisted reproduction. Further research is needed in all areas, including: perceptions of infertility and infertility treatment seeking; experiences of treatment; information and support needs; decisions to end treatment; fatherhood post assisted conception; and the motivation and experiences of sperm donors and men who seek fatherhood through surrogacy or co-parenting. This paper argues for multimethod, interdisciplinary research that includes broader populations of men which can contribute to improved clinical practice and support for users of assisted reproduction treatment

Exploring public awareness and perceptions of palliative care: a qualitative study

Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice.

Aim: To explore public perceptions of palliative care and identify strategies to raise awareness.

Design: An exploratory qualitative approach. Participants: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed.

Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participants expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies.

Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.