Developing participatory research in radiology: the use of a graffiti wall, cameras and a video box in a Scottish radiology department.

BACKGROUND: Participatory research is increasingly advocated for use in health and health services research and has been defined as a 'process of producing new knowledge by systematic enquiry, with the collaboration of those being studied'. The underlying philosophy of participatory research is that those recruited to studies are acknowledged as experts who are 'empowered to truly participate and have their voices heard'. Research methods should enable children to express themselves. This has led to the development of creative approaches of working with children that offer alternatives to, for instance, the structured questioning of children by researchers either through questionnaires or interviews. OBJECTIVE: To examine the feasibility and potential of developing participatory methods in imaging research. MATERIALS AND METHODS: We employed three innovative methods of data collection sequentially, namely the provision of: 1) a graffiti wall; 2) cameras, and 3) a video box for children's use. While the graffiti wall was open to all who attended the department, for the other two methods children were allocated to each 'arm' consecutively until our target of 20 children for each was met. RESULTS: The study demonstrated that it was feasible to use all three methods of data collection within the context of a busy radiology department. We encountered no complaints from staff, patients or parents. Children were willing to participate but we did not collect data to establish if they enjoyed the activities, were pleased to have the opportunity to make comments or whether anxieties about their treatment inhibited their participation. The data yield was disappointing. In particular, children's contributions to the graffiti wall were limited, but did reflect the nature of graffiti, and there may have been some 'copycat' comments. Although data analysis was relatively straightforward, given the nature of the data (short comments and simple drawings), the process proved to be extremely time-consuming. This was despite the modest amount of data collected. CONCLUSIONS: Novel methods of engaging with children have been shown to be feasible although further work is needed to establish their full potential.

The information needs of people attending for computed tomography (CT): what are they and how can they be met?

OBJECTIVE: To establish patients' knowledge of CT, their views of information provided and explore the role of information in imaging. METHODS: A sample of 150 first-time outpatients attending for CT scanning at a Scottish hospital. The study had three phases: a questionnaire survey; structured interviews pre-scan and face-to-face interviews post-scan. RESULTS: One hundred and twelve questionnaires were returned with 82 deemed usable. Sixty and 53 respondents participated in the pre-scan and post-scan interviews, respectively. Thirty percent of questionnaire respondents and 57.4% of pre-scan interviewees identified accurately the type of scan to be received. Scores on the knowledge test improved by the time of the pre-scan interview. During all stages of the study family members were described as a source of information. Patients reported clinicians as providing few details about the scan, and there was confusion about how results were communicated. Most interviewees thought the leaflet had prepared them for the procedure. CONCLUSION: The study revealed a lack of familiarity with CT scanning, diverse informational needs, and the importance of personal contact in information giving. PRACTICE IMPLICATIONS: The study raised wide-ranging issues and highlights the key role of information in the provision of diagnostic health services.

People with learning disabilities, carers and care workers awareness of health risks and implications for primary care.

BACKGROUND: People with learning disabilities have become increasingly exposed to health risk with the move to community living. Yet, health promotion is poorly developed with a heavy reliance on primary care. OBJECTIVES: To elicit the perceptions of people with learning disabilities, carers and care workers regarding risk factors associated with cardiac disease. METHODS: A qualitative approach was adopted incorporating semi-structured interviews based on vignettes. Twenty people with mild learning disabilities, 10 carers and 10 care workers were recruited. Data were analysed using Miles and Huberman's five-fold process. RESULTS: In total, 29 women and 11 men were interviewed. A range of health risks was identified with different patterns across groups. There were common concerns around diet. Approximately 50% of participants also had worries regarding 'excessive computer usage', often related to physical inactivity, and a similar proportion identified social isolation as a risk. The importance of safeguarding personal autonomy was stressed in all three groups. CONCLUSION: We demonstrated the feasibility of engaging with people with mild learning disabilities regarding health improvement. Participants recognized not only risks but also the subtle interplay of different factors, reflecting a grasp of the complexity of health promotion. Approaches within primary care to health improvement need to acknowledge this level of awareness.

The use of patient-centered outcome measures in radiology: a systematic review.

RATIONALE AND OBJECTIVES: To undertake a systematic review of literature on patient centred outcomes and explore the use of patient defined outcomes in radiology research. MATERIALS AND METHODS: i) DATA SOURCES: Published empirical studies in peer reviewed journals. ii) STUDY SELECTION: Systematic search of English language radiology literature between 1990-2003, using four electronic databases, and reference lists of papers. Work relating to diagnostic or interventional imaging was included. Screening was excluded, together with articles based solely on the audit of patients' medical records. Patients needed to have inputted directly into the study, for example responding to questionnaires or participating in interviews. iii) DATA EXTRACTION: Abstracts were retrieved and relevant full text articles obtained. Each paper was reviewed independently by two reviewers (research team members) using a data extraction form, developed by the authors. Categorisation of papers was undertaken at team meetings. RESULTS: A total of 26 publications met the inclusion criteria for the review. Papers were placed within three categories: i) the primary aim of the study was investigate patient centred outcomes (n = 10); ii) the primary aim of the study was to describe the radiological procedure itself but patient contact was made post-procedure (n = 5) and iii) the primary aim of the study was to investigate patients' experiences during procedures (n = 11). Validated outcome measures were used in 10 studies. None of the outcome measures used were developed specifically for radiology. No papers were found where researchers had used patient defined outcomes. CONCLUSION: The research highlighted difficulties relating to the review and reporting of outcomes research. The results indicated little patient engagement in outcome research in radiology.

Stakeholders' views on measuring outcomes for people with learning disabilities.

What works and how do we know? These are recurring questions for health and social care professionals, although mediated through differing philosophies and historical perspectives. The aims of the study reported here were to discover views of managers and commissioners of services for people with learning disabilities in Scotland regarding (a) current approaches to service evaluation (as an indication of what is to be measured) and (b) healthcare outcome measurement (as an indication of preferences regarding how this should be measured). A postal questionnaire was used to survey 94 stakeholders from the NHS, Local Authorities, and non-statutory organisations across Scotland. Respondents' views were sought on current approaches to service evaluation within learning disabilities; outcome measurement; appropriateness of specified methods of measuring health outcomes; desired future methods of outcome measurement within learning disabilities; and service user involvement in care. A 77% (73/94) response rate to the questionnaire was achieved. Different methods of service evaluation were used by different stakeholders. Staff appraisal was the most frequently identified method (used by 85% of respondents). Specific outcome measures were used by 32% of respondents although there were differences of opinion as to what constitutes specific outcome measures. Overall there was strong support for goal-setting and reviewing (83%) and individualised outcome measures (75%) as appropriate methods for use with people with learning disabilities. The hypothetical question asking what outcome measures should be introduced for this client group had by far the lowest response rate (51/73). The overwhelming majority of all respondents, 68 (92%), reported user involvement in their service. Staff ambivalence to outcome measurement was evident in the research and respondents highlighted the complexity and multidimensional nature of outcomes for this service user group. Managers recognised that outcome measurement was expected but were uncertain how to go about it.

To what extent are carers involved in the care and rehabilitation of patients with hip fracture?

PURPOSE: To examine the carer's role regarding early hospital rehabilitation. METHOD: A qualitative study, using semi-structured interviews with 30 carers. A convenience sample was obtained through participants volunteering for the study. Interviews were of 30 - 45 minutes duration and were audiotaped. The transcripts were read in their entirety by all authors. Main themes were identified and coded. RESULTS: Twenty women and ten men were recruited, who cared for 22 women and eight men. A third of the interviewees reported other caring responsibilities. Carers performed a range of tasks for the patient and most revolved around the key activity of hospital visiting. A range of functions were undertaken, including: help with eating and drinking; providing the opportunity for social interaction; acting as a link between the external world and hospital; and offering emotional support. CONCLUSIONS: Carers not only provided practical help but also offered psychological support. Our study highlights the key role of carers in the rehabilitation of patients with hip fracture and provides support for the recommendation that family members should be provided with information regarding rehabilitation. Carers need to be regarded as a resource by hospital staff, given their key role in enhancing patient motivation.

Counseling children with chronic physical illness.

We examine the needs of children with chronic physical illness and discuss how their needs may be met by counseling. Initially counseling is defined and boundaries with other activities established. Issues involved in counseling children with chronic illness are outlined and children's special needs regarding psychosocial issues discussed, with examples relating to asthma, cystic fibrosis, diabetes and epilepsy presented. Finally recommendations are made regarding counseling services.

What do patients know about ultrasound, CT and MRI?

OBJECTIVES: To establish the level of patient knowledge of ultrasound (US), computed tomography (CT) and magnetic resonance imaging (MRI); to describe patient information-seeking behaviour before attendance; and to assess patients' understanding of the main aspects of scanning examinations. DESIGN: Survey of people attending for ultrasound, CT and MRI using a questionnaire, including 12 statements on simple aspects of procedures, to be indicated as true or false. SETTING: Radiology department of an acute teaching hospital NHS Trust in the north-east of Scotland. PARTICIPANTS: A convenience sample of 500 out-patient, non-emergency first time attenders for ultrasound (300), computed tomography (150), and magnetic resonance imaging (50). RESULTS: An 82% response rate to the questionnaire was achieved. Less than half the patients (48.9%, 182/372) indicated they knew the type of investigation they had been referred for. When responses were compared with referral letters, 64% (238/372) were incongruent. Few participants hadsought information (32%, 120/372), but of those who had the main source was family and friends (72%, 86/120). Seven participants searched the Internet. Eighty-two percent (308/372) of participants reported having been given an explanation of why an investigation was necessary. The majority of participants (67.8%, 251/372) expected to receive their results within 2 weeks. The mean score on the 12 true/false knowledge statements was 3.8, and 17% (65/372) answered 'Don't know' to all the statements. One person answered all questions correctly. CONCLUSIONS: Patients were not well informed regarding these investigations. This has significant implications for information-giving strategies and informed consent.

Will it hurt? Patients' experience of X-ray examinations: a pilot study.

BACKGROUND: There is a worldwide trend towards involving patients in health care, but little is known about children's expectations of routine radiological procedures. OBJECTIVE: To determine children's perceptions of X-ray examinations. MATERIALS AND METHODS: A convenience sample was selected from consecutive patients referred to a children's hospital in Scotland. Children were allocated either to a drawing study ( n=20) or a two-stage interview ( n=25). The investigation was restricted to first-time users of the radiological service aged 7-14 years if accompanied by a parent and consent having been obtained. Children were excluded if pain control was administered in the Accident and Emergency Department. Children's drawings were reported on by an art therapist and a child psychiatrist. RESULTS: All children approached agreed to participate. Seventeen children provided accurate pictures of the X-ray examination room. Concordance existed between the psychiatrist's and art therapist's reports. Children at interview had at least a minimal level of knowledge of X-rays and this was from (1) family, friends and neighbours, (2) the school classroom, and (3) television programmes. CONCLUSIONS: Children had anxieties revealed through drawings and interviews. We recommend drawings for establishing children's views of radiology.