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

The human dimensions of post-stroke homecare: experiences of older carers from diverse ethnic groups

Carers from BME and White British groups share many experiences of homecare although language and cultural difference may exacerbate common pressures and stresses. The framework for humanising care is a useful tool to evaluate aspects of homecare that are responsive to dignity and diversity. Implications for Rehabilitation Explicitly identifying, describing and valuing the human dimensions of care may support services in responding appropriately to homecare users from black minority ethnic communities as well as those from white majority groups. Unresponsive services and poor communication may lead to loss of trust with care agencies and undermine BME carers' sense of entitlement and competence in engaging with homecare services. Care worker continuity investing time in building relationships and care worker familiarity is important to many families who access social care services

Rethinking 'risk' and self-management for chronic illness

Self-management for chronic illness is a current high profile UK healthcare policy. Policy and clinical recommendations relating to chronic illnesses are framed within a language of lifestyle risk management. This article argues the enactment of risk within current UK self-management policy is intimately related to neo-liberal ideology and is geared towards population governance. The approach that dominates policy perspectives to ‘risk' management is critiqued for positioning people as rational subjects who calculate risk probabilities and act upon them. Furthermore this perspective fails to understand the lay person's construction and enactment of risk, their agenda and contextual needs when living with chronic illness. Of everyday relevance to lay people is the management of risk and uncertainty relating to social roles and obligations, the emotions involved when encountering the risk and uncertainty in chronic illness, and the challenges posed by social structural factors and social environments that have to be managed. Thus, clinical enactments of self-management policy would benefit from taking a more holistic view to patient need and seek to avoid solely communicating lifestyle risk factors to be self-managed

Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research

<b>Background</b> Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<p></p> <b>Methods and findings</b> The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<p></p> <b>Conclusions</b> Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems

Returning to work after stroke: perspectives of employer stakeholders, a qualitative study.

Purpose: More than 40 % of working age adults with stroke fail to return to work. The work context is a key factor in return to work, but little is known about the experiences of employers in supporting employees with stroke. The aim of this study was to explore return to work after stroke from the employer perspective, to identify key features associated with success and to seek participants’ views regarding the role of healthcare in return to work. Methods: Data was gathered through 18 semi-structured interviews with employer stakeholders and included small business owners, line managers, human resources and occupational health staff. Data was analysed thematically. Results: The main themes identified were: the impact of stroke on the employer, characteristics of the employee, communication, knowledge and information, experience of other stakeholders, integrating healthcare in return to work. Conclusion: Employers face complex emotional and practical issues when helping an employee return to work after stroke, for which many lack knowledge and experience. The range and quality of support networks that they access is variable and advice and support from clinicians is welcomed. Further research is necessary to investigate how such support could be funded and integrated within existing service provision

Risk perception of women during high risk pregnancy: A systematic review

Risk perception in women with high risk pregnancies can affect their attitude to medical care and therefore influence the wellbeing of mother and baby. This article reviews quantitative measures of risk perception in women with high risk pregnancies. A systematic search of eight electronic databases was conducted. Additional articles were obtained through searching references of identified articles. Seven studies were identified that reported quantitative measures of risk perception in relation to high risk pregnancy. The main findings were that women with high risk pregnancies perceive themselves and the pregnancies to be at risk. However, mean risk scores consistently fall below the midpoint on risk perception measures suggesting women do not perceive this risk as extreme. Women with high risk pregnancies consistently rated their risk as being greater than that of women with low risk pregnancies. Results were inconsistent for the association between women's risk perception and that of healthcare professionals. Women with higher socio-economic status were more likely to be concerned about risk, although lower socio-economic status is associated with increased risk in pregnancy. There was a consistent association between high risk pregnancy and higher levels of anxiety. This review indicates that women at high risk during pregnancy do not perceive this risk to be extreme and that there is poor agreement between women's and healthcare professionals’ perceptions of risk. This is likely to have implications for medical care and pregnancy outcomes

Absolute risk representation in cardiovascular disease prevention: comprehension and preferences of health care consumers and general practitioners involved in a focus group study

Background Communicating risk is part of primary prevention of coronary heart disease and stroke, collectively referred to as cardiovascular disease (CVD). In Australia, health organisations have promoted an absolute risk approach, thereby raising the question of suitable standardised formats for risk communication. Methods Sixteen formats of risk representation were prepared including statements, icons, graphical formats, alone or in combination, and with variable use of colours. All presented the same risk, i.e., the absolute risk for a 55 year old woman, 16% risk of CVD in five years. Preferences for a five or ten-year timeframe were explored. Australian GPs and consumers were recruited for participation in focus groups, with the data analysed thematically and preferred formats tallied. Results Three focus groups with health consumers and three with GPs were held, involving 19 consumers and 18 GPs. Consumers and GPs had similar views on which formats were more easily comprehended and which conveyed 16% risk as a high risk. A simple summation of preferences resulted in three graphical formats (thermometers, vertical bar chart) and one statement format as the top choices. The use of colour to distinguish risk (red, yellow, green) and comparative information (age, sex, smoking status) were important ingredients. Consumers found formats which combined information helpful, such as colour, effect of changing behaviour on risk, or comparison with a healthy older person. GPs preferred formats that helped them relate the information about risk of CVD to their patients, and could be used to motivate patients to change behaviour. Several formats were reported as confusing, such as a percentage risk with no contextual information, line graphs, and icons, particularly those with larger numbers. Whilst consumers and GPs shared preferences, the use of one format for all situations was not recommended. Overall, people across groups felt that risk expressed over five years was preferable to a ten-year risk, the latter being too remote. Conclusions Consumers and GPs shared preferences for risk representation formats. Both groups liked the option to combine formats and tailor the risk information to reflect a specific individual's risk, to maximise understanding and provide a good basis for discussion

How do family physicians communicate about cardiovascular risk? Frequencies and determinants of different communication formats

Background: Patients understand information about risk better if it is communicated in numerical or visual formats (e.g. graphs) compared to verbal qualifiers only. How frequently different communication formats are used in clinical primary care settings is unknown. Methods: We collected socioeconomic and patient understanding data using questionnaires and audio-recorded consultations about cardiovascular disease risk. The frequencies of the communication formats were calculated and multivariate regression analysis of associations between communication formats, patient and general practitioner characteristics, and patient subjective understanding was performed. Results: In 73% of 70 consultations, verbal qualifiers were used exclusively to communicate cardiovascular risk, compared to numerical (11%) and visual (16%) formats. Female GPs and female patient's gender were significantly associated with a higher use of verbal formats compared to visual formats (p = 0.001 and p = 0.039, respectively). Patient subjective understanding was significantly higher in visual counseling compared to verbal counseling (p = 0.001). Conclusions: Verbal qualifiers are the most often used communication format, though recommendations favor numerical and visual formats, with visual formats resulting in better understanding than others. Also, gender is associated with the choice of communication format. Barriers against numerical and visual communication formats among GPs and patients should be studied, including gender aspects. Adequate risk communication should be integrated into physicians' education