Using a model of group psychotherapy to support social research on sensitive topics

This article describes the exploratory use of professional therapeutic support by social researchers working on a sensitive topic. Talking to recently bereaved parents about the financial implications of their child's death was expected to be demanding work, and the research design included access to an independent psychotherapeutic service. Using this kind of professional support is rare within the general social research community, and it is useful to reflect on the process. There are likely to be implications for collection and interpretation of data, research output and the role and experience of the therapist. Here, the primary focus is the potential impact on researcher well-being

‘Missing out’: Reflections on the positioning of ethnographic research within an evaluative framing

Contemporary approaches to evaluating ‘complex’ social and health interventions are opening up spaces for methodologies attuned to examining contextual complexities, such as ethnography. Yet the alignment of the two agendas – evaluative and ethnographic – is not necessarily comfortable in practice. I reflect on experiences of conducting ethnographic research alongside a public health evaluation of a community-based initiative in the UK, using the lens of ‘missing out’ to examine intersections between my own ethnographic concerns and those of the communities under study. I examine potential opportunities posed by the discomfort of ‘missing out’, particularly for identifying the processes and spaces of inclusion and exclusion that contributed both to my ethnographic experiences and to the realities of the communities engaging with the initiative. This reveals productive possibilities for a focus on ‘missing out’ as a form of relating for evaluations of the impacts of such initiatives on health and social inequalities

Doing research in peoples’ homes: fieldwork, ethics and safety – on the practical challenges of researching and representing life on the margins

Drawing on the author’s experiences and reflections of researching vulnerable people for a housing research project, this article explores the ethical dilemmas, and the health and safety challenges, of conducting in-depth, qualitative interviews with ‘vulnerable’ research participants in their own homes. Vulnerability, in a housing research context, takes account of: living in poverty; insecure housing/employment situations; poor health and/or mental ill health; alcohol and /or drug dependency, etc. Diary notes are used to illustrate the challenging situations that can unfold when working alone in the field in disadvantaged areas, with vulnerable people, which can present physical and emotional risk. Concern with risk and the potential impact on individuals is two-fold: that on the participant; and that on the researcher. Through reflexivity and revisiting of experiences in the field, this paper explains the difficulties and negotiations, and it provides some suggestions for better research practice

Developing core sets for persons following amputation based on the International Classification of Functioning, Disability and Health as a way to specify functioning

Amputation is a common late stage sequel of peripheral vascular disease and diabetes or a sequel of accidental trauma, civil unrest and landmines. The functional impairments affect many facets of life including but not limited to: Mobility; activities of daily living; body image and sexuality. Classification, measurement and comparison of the consequences of amputations has been impeded by the limited availability of internationally, multiculturally standardized instruments in the amputee setting. The introduction of the International Classification of Functioning, Disability and Health (ICF) by the World Health Assembly in May 2001 provides a globally accepted framework and classification system to describe, assess and compare function and disability. In order to facilitate the use of the ICF in everyday clinical practice and research, ICF core sets have been developed that focus on specific aspects of function typically associated with a particular disability. The objective of this paper is to outline the development process for the ICF core sets for persons following amputation. The ICF core sets are designed to translate the benefits of the ICF into clinical routine. The ICF core sets will be defined at a Consensus conference which will integrate evidence from preparatory studies, namely: (a) a systematic literature review regarding the outcome measures of clinical trails and observational studies, (b) semi-structured patient interviews, (c) international experts participating in an internet-based survey, and (d) cross-sectional, multi-center studies for clinical applicability. To validate the ICF core sets field-testing will follow. Invitation for participation: The development of ICF Core Sets is an inclusive and open process. Anyone who wishes to actively participate in this process is invited to do so

Environmental screening tools for assessment of infrastructure plans based on biodiversity preservation and global warming (PEIT, Spain).

Most Strategic Environmental Assessment (SEA) research has been concerned with SEA as a procedure, and there have been relatively few developments and tests of analytical methodologies. The first stage of the SEA is the ‘screening’, which is the process whereby a decision is taken on whether or not SEA is required for a particular programme or plan. The effectiveness of screening and SEA procedures will depend on how well the assessment fits into the planning from the early stages of the decision-making process. However, it is difficult to prepare the environmental screening for an infrastructure plan involving a whole country. To be useful, such methodologies must be fast and simple. We have developed two screening tools which would make it possible to estimate promptly the overall impact an infrastructure plan might have on biodiversity and global warming for a whole country, in order to generate planning alternatives, and to determine whether or not SEA is required for a particular infrastructure plan

Mixing methods to explore appearance in dementia care

This paper considers approaches to investigating appearance and the work invested in maintaining it within dementia care. Our focus is upon methodological and methods-related issues associated with the challenge of generating knowledge of the embodied worlds of people with dementia. We begin with a brief overview of the literature on appearance and dementia, and consider what it teaches us about the nature of appearance and ways of understanding it. We describe and discuss the mixing of methods for an on-going investigation into hairdressing in dementia care: The Hair and Care project. Based upon the experience of research in care-based hair salons, we argue for a creative use of methods in dementia studies as an avenue to better engaging with the embodied experiences of people with dementia and, as a result, understanding how people use their bodies and senses to create meaningful worlds. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav

Building consensus about eHealth in Slovene primary health care: Delphi study

<p>Abstract</p> <p>Background</p> <p>Slovenia's national eHealth strategy aims to develop an efficient, flexible and modern health care informatics framework that would be comparable to the most successful EU countries. To achieve this goal, the gap between availability and usage of information and communication technology by primary care physicians needs to be reduced.</p> <p>As recent efforts show, consensus on information and communication technology purpose and usage in primary care needs to be established before any national information and communication technology solutions are developed.</p> <p>The aim of this study was to identify the most appropriate measures in implementation of Slovene national eHealth strategy and to suggest an appropriate model for success by using the three round Delphi study.</p> <p>Methods</p> <p>An e-mail based, three-round Delphi study was undertaken to achieve consensus from a selected sample of nationally recognized experts from the fields of primary health care and medical informatics. The aim of this study was to identify the most appropriate measures and key obstacles in implementation of eHealth in Slovene primary health care by using the Delphi study.</p> <p>Results</p> <p>High levels of consensus on the majority of suggested measures were achieved among all study participants, as well as between the subgroups of experts from primary health care and medical informatics. All aims of the three-round Delphi study on eHealth implementation in Slovenian primary health care were achieved.</p> <p>Conclusions</p> <p>The three round decision Delphi process has proven to be effective for developing outcomes, ranking key priorities in primary care eHealth development, and achieving consensus among the most influential experts in that field. This consensus is an important contribution to future national eHealth strategies in the field of primary health care.</p

"Don't wait for them to come to you, you go to them". A qualitative study of recruitment approaches in community based walking programmes in the UK

<p>Abstract</p> <p>Background</p> <p>This study aimed to examine the experiences of walking promotion professionals on the range and effectiveness of recruitment strategies used within community based walking programmes within the United Kingdom.</p> <p>Methods</p> <p>Two researchers recruited and conducted semi-structured interviews with managers and project co-ordinators of community based walking programmes, across the UK, using a purposive sampling frame. Twenty eight interviews were conducted, with community projects targeting participants by age, physical activity status, socio-demographic characteristics (i.e. ethnic group) or by health status. Three case studies were also conducted with programmes aiming to recruit priority groups and also demonstrating innovative recruitment methods. Data analysis adopted an approach using analytic induction.</p> <p>Results</p> <p>Two types of programmes were identified: those with explicit health aims and those without. Programme aims which required targeting of specific groups adopted more specific recruitment methods. The selection of recruitment method was dependent on the respondent’s awareness of ‘what works’ and the resource capacity at their disposal. Word of mouth was perceived to be the most effective means of recruitment but using this approach took time and effort to build relationships with target groups, usually through a third party. Perceived effectiveness of recruitment was assessed by number of participants rather than numbers of the right participants. Some programmes, particularly those targeting younger adult participants, recruited using new social communication media. Where adopted, social marketing recruitment strategies tended to promote the ‘social’ rather than the ‘health’ benefits of walking.</p> <p>Conclusions</p> <p>Effective walking programme recruitment seems to require trained, strategic, labour intensive, word-of-mouth communication, often in partnerships, in order to understand needs and develop trust and motivation within disengaged sedentary communities. Walking promotion professionals require better training and resources to deliver appropriate recruitment strategies to reach priority groups.</p

Cognitive behavioural therapy with optional graded exercise therapy in patients with severe fatigue with myotonic dystrophy type 1:a multicentre, single-blind, randomised trial

Background: Myotonic dystrophy type 1 is the most common form of muscular dystrophy in adults and leads to severe fatigue, substantial physical functional impairment, and restricted social participation. In this study, we aimed to determine whether cognitive behavioural therapy optionally combined with graded exercise compared with standard care alone improved the health status of patients with myotonic dystrophy type 1. Methods: We did a multicentre, single-blind, randomised trial, at four neuromuscular referral centres with experience in treating patients with myotonic dystrophy type 1 located in Paris (France), Munich (Germany), Nijmegen (Netherlands), and Newcastle (UK). Eligible participants were patients aged 18 years and older with a confirmed genetic diagnosis of myotonic dystrophy type 1, who were severely fatigued (ie, a score of ≥35 on the checklist-individual strength, subscale fatigue). We randomly assigned participants (1:1) to either cognitive behavioural therapy plus standard care and optional graded exercise or standard care alone. Randomisation was done via a central web-based system, stratified by study site. Cognitive behavioural therapy focused on addressing reduced patient initiative, increasing physical activity, optimising social interaction, regulating sleep–wake patterns, coping with pain, and addressing beliefs about fatigue and myotonic dystrophy type 1. Cognitive behavioural therapy was delivered over a 10-month period in 10–14 sessions. A graded exercise module could be added to cognitive behavioural therapy in Nijmegen and Newcastle. The primary outcome was the 10-month change from baseline in scores on the DM1-Activ-c scale, a measure of capacity for activity and social participation (score range 0–100). Statistical analysis of the primary outcome included all participants for whom data were available, using mixed-effects linear regression models with baseline scores as a covariate. Safety data were presented as descriptives. This trial is registered with ClinicalTrials.gov, number NCT02118779. Findings: Between April 2, 2014, and May 29, 2015, we randomly assigned 255 patients to treatment: 128 to cognitive behavioural therapy plus standard care and 127 to standard care alone. 33 (26%) of 128 assigned to cognitive behavioural therapy also received the graded exercise module. Follow-up continued until Oct 17, 2016. The DM1-Activ-c score increased from a mean (SD) of 61·22 (17·35) points at baseline to 63·92 (17·41) at month 10 in the cognitive behavioural therapy group (adjusted mean difference 1·53, 95% CI −0·14 to 3·20), and decreased from 63·00 (17·35) to 60·79 (18·49) in the standard care group (−2·02, −4·02 to −0·01), with a mean difference between groups of 3·27 points (95% CI 0·93 to 5·62, p=0·007). 244 adverse events occurred in 65 (51%) patients in the cognitive behavioural therapy group and 155 in 63 (50%) patients in the standard care alone group, the most common of which were falls (155 events in 40 [31%] patients in the cognitive behavioural therapy group and 71 in 33 [26%] patients in the standard care alone group). 24 serious adverse events were recorded in 19 (15%) patients in the cognitive behavioural therapy group and 23 in 15 (12%) patients in the standard care alone group, the most common of which were gastrointestinal and cardiac. Interpretation: Cognitive behavioural therapy increased the capacity for activity and social participation in patients with myotonic dystrophy type 1 at 10 months. With no curative treatment and few symptomatic treatments, cognitive behavioural therapy could be considered for use in severely fatigued patients with myotonic dystrophy type 1. Funding: The European Union Seventh Framework Programme