Bob Heyman

Complications of intestinal stomas.

Stomal complications are prevalent and associated with considerable morbidity. This study examined the incidence and potential risk factors for their development.

Patients' views on follow up of colorectal cancer: implications for risk communication and decision making

Background: Medical views about the clinical value and potential detrimental effect on quality of life of postoperative follow up are divided. There is no literature on the views of British patients with colorectal cancer towards the follow up process. Aim: To investigate patients’ views and experiences of follow up of colorectal cancer, and to assess their attitudes towards suggested changes to follow up policy. Patients and methods: A total of 156 asymptomatic and disease-free patients with colorectal cancer were identified from the follow up clinic. Recurrence-free status was confirmed through retrieval of computerised clinic letters. A postal survey using a 39 item piloted questionnaire was undertaken. Data analysis generated descriptive statistics and logistic regression models. Results: A response rate of 61% (95) was obtained. Among these respondents, 63% (60) had undergone initial surgery within three years of the time of the survey, and 86% (82) patients expected a further follow up appointment. Majorities of the sample, ranging from 71% (67) to 96% (91), expressed satisfaction with respect to clinic delays, staff conduct and knowledge about their case, consultation time, and being able to discuss personal problems freely. However some patients reported difficulty in discussing sexual problems at the clinic. Appointment imminence caused anxiety, sleep problems, and decreased appetite in 35% (35), 27% (26), and 8 % (8) of patients respectively. However, 78% (74) patients felt reassured and optimistic for the future after receiving results. Such optimism is not necessarily justified in terms of estimated mortality risks. A majority (78%, 66) stated that they would value finding out about the presence of recurrence even if there would be no survival benefit. Nearly half of the sample (48%, 43) felt that they would disagree with the cessation of follow up in any circumstances. Only 47% (42) and 27% (24) indicated that they would accept follow up by a specialist nurse or their general practitioner, respectively. Attitude to follow up was unrelated to reported anxiety before appointments. Only 22% (19) of the sample could identify risk indicators for recurrence, but 64% (61) agreed that they would like to be told what to look for. Discussion: A sample of patients with colorectal cancer expressed a high degree of satisfaction with hospital follow up. Although a substantial minority reported suffering from pre-visit anxiety, most felt that this disadvantage was compensated for by reassuring results, and believed that investigations did not have a significant negative impact on their quality of life. Respondents valued hospital follow up, and half would reject complete discharge or alternative forms of follow up. These findings demonstrate that patients have a different perception of the risk of recurrence than clinicians who would consider the survival prospects for most patients to be more or less unaffected by follow up interventions. Attempted modifications to follow up policies should be introduced with caution, and should take account of patient understanding of medical reasoning. The findings also raise questions about risk communication with patients.

Making sense in primary care: levelling the playing field for people with communication difficulties

Primary care depends on the effective communication between service user and practitioner. This study proposes that people with communication difficulties serve as a litmus test for whether practitioners are truly sensitised to the impact of their own communication skills. It is based on interviews with service users and carers. Three key themes emerged, namely inclusion, the process of communication, and continuity. Inclusion is concerned with effective participation in society in general and access to health care in particular. The communication process describes the way in which health issues are raised and addressed. Continuity refers to the way in which time interacts with the relationship between user and provider. The paper concludes that effective communication is not simply a set of taught behaviours but reflects a set of values that create the conditions for improving both communication and clinical outcomes.

PROBABILITIES AND HEALTH RISKS A QUALITATIVE APPROACH

Health risks, defined in terms of the probability that an individual will suffer a particular type of adverse health event within a given time period, can be understood as referencing either natural entities or complex patterns of belief which incorporate the observers values and knowledge, the position adopted in the present paper. The subjectivity inherent in judgements about adversity and time frames can be easily recognised, but social scientists have tended to accept uncritically the objectivity of probability. Most commonly in health risk analysis, the term probability refers to rates established by induction, and so requires the definition of a numerator and denominator. Depending upon their specification, many probabilities may be reasonably postulated for the same event, and individuals may change their risks by deciding to seek or avoid information. These apparent absurdities can be understood if probability is conceptualised as the projection of expectation onto the external world. Probabilities based on induction from observed frequencies provide glimpses of the future at the price of acceptance of the simplifying heuristic that statistics derived from aggregate groups can be validly attributed to individuals within them. The paper illustrates four implications of this conceptualisation of probability with qualitative data from a variety of sources, particularly a study of genetic counselling for pregnant women in a U.K. hospital. Firstly, the official selection of a specific probability heuristic reflects organisational constraints and values as well as predictive optimisation. Secondly, professionals and service users must work to maintain the facticity of an established heuristic in the face of alternatives. Thirdly, individuals, both lay and professional, manage probabilistic information in ways which support their strategic objectives. Fourthly, predictively sub-optimum schema, for example the idea of AIDS as a gay plague, may be selected because they match prevailing social value systems.

Stakeholders’ perceptions of a research capacity development project for nurses, midwives and allied health professionals

AIMS To evaluate stakeholders perceptions of the extent to which a research facilitator post was addressing aims of: * providing academic support to enable research involvement of nurses, midwives and allied health professionals; * supporting dissemination of research into practice; * contributing to research strategy development. BACKGROUND Barriers to research capacity development have been recognized for nurses, midwives and allied health professionals. A project established in a London NHS trust aimed to address these. METHODS A mixed methods approach was used. RESULTS Responses were generally very positive. The post effected improvements in the research culture and perceived increase in research-related activities. CONCLUSION The post made substantial progress towards its aims. This approach may be useful in other healthcare locations to build research capacity. IMPLICATIONS FOR NURSING MANAGEMENT Challenged by increasing priority accorded to research capacity and service research implementation yet recognition of barriers to achievement, this study offers insights from one means to address this.

Keeping warm and staying well. Does home energy efficiency mediate the relationship between socio-economic status and the risk of poorer health?

This paper discusses the findings of two surveys, undertaken in 2000 and 2001, which investigated relationships between home energy efficiency, socio-economic status and respondent health. Data were collected through interviews with an informant from each household and energy surveys. Respondents were drawn from relatively poor households. The main health measure used in the analysis, respondent-assessed overall health, was statistically significantly related to other health indicators, including SF36 scores, the reported presence of limiting conditions and health care behaviours such as visiting the GP. Worse respondent self-assessed health was statistically significantly related to occupational, wealth and income measures of poorer socio-economic status. However, measures of heating satisfaction and sense of mastery displaced the socio-economic measures when they were included in the predictive logistic regression model for self-assessed respondent health. Objective home energy efficiency, measured by SAP ratings, was associated with health in the model independently of the subjective measure. The findings support other evidence that home energy efficiency makes an important contribution to the relationship between lower socio-economic status and poorer health, and document the combined relationship between objective and subjectively measured home energy efficiency and health.

Devoted protection: How parents of children with severe learning disabilities manage risks

This paper aims to explore the risk perceptions of parents caring for children who have severe learning disabilities and complex medical needs. The paper draws upon a qualitative study involving 20 parents, mostly mothers. The findings document the demanding care requirements which these parents had to meet. Parents viewed their role in terms of devoted vocation rather than meeting a burdensome obligation. This dedication interacted with heightened risk consciousness to fuel a sense of undelimited responsibility. Parents tended not to place sectoral or temporal boundaries around their responsibility for the care of their child. Their approach was mediated by a prevailing but not universal mistrust of the caring capabilities of others. Although parents sometimes temporarily transferred caring duties to others, they usually retained a sense of anxious responsibility for such care, supervising or auditing the activities of other carers rather than delegating risk ownership. Trust was conferred on others only when they had demonstrated a good record of accomplishment of care for the child, and were seen to have acquired detailed idiographic understanding of their individual complex needs. The findings can be understood in relation to a broader societal context of individualisation of responsibility.

Forensic mental health services as a risk escalator: a case study of ideals and practice

Medium/low secure units occupy a central role in forensic mental health care, bridging high secure and community services. Although outcomes, assessed in terms of readmission and identified reoffending, have been evaluated, little research exploring processes underlying attempted rehabilitation for offenders diagnosed as having mental health problems has been undertaken. The present qualitative study built upon previous research completed in a northern England medium/low secure forensic mental health care institution for adults with learning disabilities (Heyman et al. 2002a,b). It was carried out in a medium/low secure forensic mental health care Unit located in London. In phase one, 43 staff, including general managers, doctors, nurses, psychologists and occupational therapists were interviewed about their philosophy of care, views about risk management for forensic mental health patients and perceptions of the Unit. In phase two, 10 case studies of patients were undertaken. As far as possible, patients were interviewed twice over a period of 11‐20 months, and staff were asked about their progress. Two case conferences were observed. Data were analysed using the metaphorical concept of a rehabilitative risk escalator around three themes carried forward from the previous study: organisational issues; patient active risk management; and multiprofessional collaboration.

‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such a concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation, transition to adulthood in late-modern society and risk management for those deemed vulnerable.

A Randomised Controlled Trial of an Energy Efficiency Intervention for Families Living in Fuel Poverty

This paper discusses a pragmatic randomised controlled trial of a fuel poverty intervention undertaken in NE England over a four-year period, starting in 2000/2001. Home energy efficiency was measured through Standardised Assessment Procedure (SAP) ratings in each year of the trial. The trial group received an energy efficiency intervention package in year three, and the control group in year four. Year three room temperature data for a sub-sample of 100 households were obtained. A comparison group of households not living in fuel poverty were also surveyed in all four years of the study. The intervention improved SAP ratings by 12 points, generating room temperature increases of about one degree Celsius. Families did not respond to energy efficiency gains by reducing their heating expenditure. The intervention generated improvements in satisfaction with household warmth. Its receipt was not associated with gains in self-reported health. However, modest correlations between room temperatures and better social functioning, as measured by the SF36, was found.