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1、Speaking up about safety concerns: multi-setting qualitative study of patients views and experiencesVikki A Entwistle, Dorothy McCaughan, Ian S Watt, Yvonne Birks, Jill Hall, Maggie Peat, Brian Williams, John Wright for the PIPS (Patient Involvement in Patient Safety) groupVikki A Entwistle, Profess
2、or of Values in Healthcare, Social Dimensions of Health Institute, University of Dundee, 11 Airlie Place, Dundee, DD1 4HJDorothy McCaughan, Research Fellow, Department of Health Sciences, University of York, Seebohm Rowntree Building, Heslington Campus, York, YO10 5DD Ian S Watt, Professor of Primar
3、y and Community Care, Hull York Medical School, Department of Health Sciences, Seebohm Rowntree Building, Heslington Campus, York, YO10 5DDYvonne Birks, Senior Research Fellow, Department of Health Sciences, University of York, Seebohm Rowntree Building, Heslington Campus, York, YO10 5DD Jill Hall,
4、Research Fellow, Department of Health Sciences, University of York, Seebohm Rowntree Building, Heslington Campus, York, YO10 5DD Maggie Peat, Senior Research Nurse, Harrogate and District Foundation NHS Trust, Harrogate District Hospital, Lancaster Park Road, HG2 7SX Brian Williams, Director, Social
5、 Dimensions of Health Institute, University of Dundee, 11 Airlie Place, Dundee, DD1 4HJJohn Wright, Director, Bradford Institute for Health Research, Bradford Royal Infirmary, BD9 6RJ. Contacts for corresponding author: v.entwistlecpse.dundee.ac.uk; tel. 01382 388661 or (01224 749720 home, not for p
6、ublication).Word count for main text: 2970 Key words: patient safety; patient participation; professional-patient relationsThe PIPS group comprises the authors of this paper plus Simon Gilbodya, Su Goldera, Peter Mansellb and Trevor Sheldona. (a. University of York; b. Formerly with National Patient
7、 Safety Agency)AbstractObjectives: To explore patients and family members experiences of and views about speaking up about safety concerns at the point of care.Design: Qualitative study using 71 individual interviews and 12 focus group discussions. Participants and settings: People with recent exper
8、ience of one of five conditions or interventions associated with different safety problems (childhood asthma, diabetes, breast cancer, elective joint replacement, severe and enduring mental health problems) and people who had lodged concerns with healthcare providers were recruited from both NHS ser
9、vices (primary and secondary care) and patient support organisations.Findings: Participants had identified various safety concerns in the course of their healthcare and had sometimes spoken up about these as they occurred. Their inclination and ability to speak up were apparently variously shaped by
10、 their assessments of: the gravity of the threat of harm; the relative importance of their concern given other patients needs and staff workloads and priorities; their confidence about their grounds for concern; roles and responsibilities; and the likely consequences of speaking up. These assessment
11、s were pervasively influenced by the way healthcare staff behaved and related to them. People who had spoken up about concerns reported diverse responses from health professionals. Some responses averted harm or provided welcome reassurance, but others exacerbated anxieties and possibly contributed
12、to patient harm. ConclusionThe potential for patients to contribute to their safety by speaking up about their concerns depends heavily on the quality of patient-professional interactions and relationships. Abstract: 239Key words: patient safety; patient participation; professional-patient relations
13、Speaking up about safety concerns: multi-setting qualitative study of patients views and experiencesRecent initiatives to improve patient safety have focused on reporting and learning from safety problems, improving the design of healthcare technologies and systems, communication among health profes
14、sionals, and safety cultures within healthcare organisations.1,2 The possibility that patients We use the term patients to include patients, their family members and others who care for them but are not employed to do so as members of health service staff. might contribute to their own and others sa
15、fety was noted early in the patient safety movement: To Err is Human2 suggested they could serve as last (failsafe) checks in their care. Several authors have since discussed other ways that patients might be involved in safety improvement.3-5 The most widespread approach to engaging patients as con
16、tributors to their own safety involves the production and dissemination of advice that encourages patients, for example, to ask clinicians if they have washed their hands, and to speak up if something doesnt seem right about their care.6-8 There have been no rigorous studies of the outcomes of this
17、approach,6,9 but theoretical critiques suggest some of the proposed behaviours would be impractical and ineffective,7,8,10,11 and studies of patients views have identified concerns about their acceptability, especially among particular patient groups.8,12-15 However, little is known about patients e
18、xperiences with the recommended behaviours. We report on a qualitative study that aimed to investigate patients perspectives on healthcare safety and their contributions to their own safety as they use health services. This paper focuses on patients experiences of and views about speaking up to secu
19、re prompt attention for problems at the point of care delivery.The study received NHS Research Ethics Committee approval. METHODSWe used strategic sampling to ensure wide variation in the patient groups and healthcare settings we considered. We identified five conditions/treatments associated with d
20、ifferent patient profiles and safety problems, and for each of these we recruited participants from (a) NHS services in contrasting areas of England (one more affluent and mixed rural/urban, the other more deprived, urban and ethnically diverse) and (b) relevant patient organisations. We also includ
21、ed people who had formally expressed safety-related concerns about their own or a relatives healthcare. The sample is summarised in Table 1.Table 1: Study sampleHealth issue Key characteristics relating to healthcare and safetySample sizes (numbers of people)Notes1. Type 2 diabetes Long term conditi
22、on Co-morbidities and polypharmacy common, especially in older patients Managed mainly in primary care Many clinical guidelines; broad agreement about management strategies Patients encouraged to monitor and manage their condition.Individual interviews: 10Focus group participants from NHS: 5Focus gr
23、oup participants from patient organisations: 9 Adults, especially aged 65+.NHS recruitment from general practices. 2. Childhood asthma Long term condition Children, parents and teachers contribute to management Managed mainly in primary care Hospitalisation for acute episodes may indicate sub-optima
24、l use of preventive and reliever medications.Individual interviews: 10Focus group participants from NHS: 6Focus group participants from patient organisations: 4 Parents of children recently hospitalised with asthma. NHS recruitment from hospital lists.3. Breast cancer Life threatening condition Mana
25、ged across primary and secondary care Patients may experience several major treatments Many clinical guidelines; recognition that some treatment decisions are preference sensitive.Individual interviews: 10Focus group participants from NHS: 6Focus group participants from patient organisations: 4 Wome
26、n treated with surgery.NHS recruitment frombreast clinic.4. Joint (hip) replacement surgery People with long term pain and functional problems Patients will have received care from primary and secondary settings Elective surgery associated with risks of healthcare acquired infection, pressure sores,
27、 fallsIndividual interviews: 10 (all interviewed twice)Focus group participants from NHS: 8Focus group participants from patient organisations: 5 NHS recruitment from lists of people scheduled for surgery.5. Severe and enduring mental health problems Stigmatising conditions Symptoms may affect abili
28、ty to recognise safety problems People often highly vulnerable but may benefit from advocacy and service user/survivor movementIndividual interviews: 10Focus group participants from NHS: 5Focus group participants from patient organisations: 4 Adults currently well enough to give consent and be inter
29、viewed.NHS recruitment via community mental health services.6. Recognised healthcare safety problems People who use (or witness family members experiences with) health services may identify a range of problems with different aspects of healthcare.Individual interviews: 11Focus group participants fro
30、m NHS: 7Focus group participants from patient organisations: 5 People who had reported a concern or complained. NHS recruitment viaPALS and trust risk managers.JH, DM and MP conducted individual interviews with 10 people from each of the 5 clinical groups and 11 people who had lodged a complaint abo
31、ut their care. People scheduled for elective joint replacement were interviewed before and after their hospital admission to facilitate exploration of both anticipated and experienced safety concerns, so we conducted 71 individual interviews in total. Interviewers asked about safety in healthcare ge
32、nerally then invited participants to focus on their own healthcare and comment on: experiences of error, harm or situations in which something could have been wrong with their care; the perceived causes and preventability of these situations; and what, if any, action they took or considered taking a
33、t the time. Interview approaches and emergent findings were reviewed and discussed regularly by team members, and reflections on early interviews encouraged careful probing of key issues in subsequent interviews. As we conducted later interviews, we agreed that no new issues were emerging. JH, DM an
34、d MP then convened twelve focus groups (one with people recruited via NHS services and one with people recruited from patient organisations for each of the six heath issues). They used material from individual interviews to develop vignettes of healthcare situations to stimulate discussion about how
35、 patients might help ensure their safety. They also asked participants to discuss the relative ease of carrying out particular actions that safety agencies have recommended. Interviews and focus groups were audio-recorded and transcribed. YB, VE, JH, DM, MP, IW and BW read a wide selection of transc
36、ripts as they became available and developed our analytic strategy in a series of team discussions. We developed a thematic coding framework that covered experiences, attitudes and beliefs about various safety issues, and that facilitated a structured analysis of events relating to each safety conce
37、rn that participants mentioned. For the primary analysis, JH, DM and MP systematically applied the agreed thematic coding framework16to transcripts from all 12 focus groups and a sample of 35 individual interviews strategically selected from across the six groups as being data-rich and including bet
38、ween them typical, critical and apparently deviant reports of safety issues and speaking up.17 VE checked the coding of 10 transcripts and DM generated an analytic matrix and produced a summary overview of the main findings.18 We presented a summary of preliminary findings at a meeting for study par
39、ticipants. VE led further analysis of findings relating to experiences and views relating to speaking up (reported here), and VE and DM between them re-read the 36 individual interview transcripts not included in the primary analysis to ensure all salient points were accommodated. FINDINGSParticipan
40、ts had perceived various problems with their healthcare. We identified 128 index concerns in the 35 individual interviews used for the primary analysis. Index concerns were situations or events mentioned at the start of problem narratives. They included: deteriorations in condition that health profe
41、ssionals did not notice or take sufficiently seriously; missed diagnoses and delays in referral and treatment; errors in prescribing, dispensing and administering medicines; errors in technical testing and treatment procedures; omissions or mistakes in communication; shortfalls in hospital accommoda
42、tion and cleanliness; exposure to threats from other patients; and deficiencies in inpatient nursing. Similar concerns were mentioned during focus group discussions, and in the other 36 individual interviews. Participants generally viewed speaking up about safety concerns as difficult requiring care
43、ful consideration and a lot of personal energy. Although some people recounted instances in which they had spoken up about perceived problems as they had arisen, they also described instances in which they had not spoken up. They mentioned a number of considerations that had influenced this, but the
44、 main overarching finding of this analysis is that patients inclination and ability to speak up is strongly influenced by how health professionals behave and relate to them. Box 1 provides an initial illustration. Box 1: Factors affecting the ease of speaking upThis extract is from a conversation am
45、ong members of a focus group. The participants, people with experience of severe and enduring mental health problems, took turns to read out various behavioural recommendations that we asked them to discuss. (4) I shall read out the first one Its “Challenge staff if you think they are doing somethin
46、g wrong”. (2) And, do you? Im going between “more difficult” and “ very difficult” because, to some extent it would depend on how well I was feeling at the time. If I were feeling confident and reasonably well, Id probably put it in the “more difficult” category, and if I were feeling really lousy,
47、I think it would be “very difficult”.(5) My husbands in hospital at the minute and I went yesterday and I noticed that the nurses are going around from patient to patient and theyre not washing their hands as theyre supposed to and his drip is empty and its now drawing blood out of his arm . instead
48、 of dripping into him. But I thought well, if you actually make a complaint, its worse for the patient, isnt it really? So I just went politely along, I didnt say anything about they werent washing their hands, but I did say could they do something about his drip.(4) Yes(5) Its not easy. I think if you complain, your numbers marked and youre a difficult patient.(3) I think Ive a fear of that, so Id probably class it as “more difficult”. Thats probably relating to my experiences in hospital where we used to live. Ive recently had a spell in hospital he