Sharing stories: complex intervention for diabetes education in minori
http://www.100md.com
《英国医生杂志》
1 Department of Primary Care and Population Sciences, University College London Medical School, London N19 5LW
Correspondence to: T Greenhalgh p.greenhalgh@pcps.ucl.ac.uk
The action research cycle, described in detail elsewhere,12 is in some ways similar to the audit cycle, in that data are systematically and successively collected in order to evaluate progress towards a series of planned changes. The different phases of this study had different goals, used different methods, and were evaluated through different data sources, as summarised in table 1. In addition, we asked an independent qualitative researcher to conduct semistructured interviews with all the research team one year into the project and again 18 months later. These interviews, and the focus group evaluations of the advocate groups and user groups, were audiotaped, transcribed, and analysed for themes by using the constant comparative method13; further details of the analysis are available on request. We combined the different qualitative and quantitative data sources in each phase to build up a rich picture of the problem area and inform the design of the next phase of action.
Table 1 Phases of the study and data collected
Results
This study has shown that action research is a feasible way of developing complex interventions involving combinations of service redesign, professional development, and user education. Complex interventions need an extensive development phase to optimise the components, implement delivery (including staff training), and develop model explanations of mechanism before being tested in randomised controlled trials.21 Progressively changing the focus of activity in response to participants' needs and priorities is an inherent feature of the action research design and allows continual refinement of the intervention as the study unfolds.11 This leads to both immediate benefits for research participants and an "optimised" intervention suitable for testing in clinical trials.
Although the bilingual health advocate led diabetes support group is a simple and appealing concept, we have shown that setting up such groups involves at least three separate components. Considerable effort must be put into training the advocates who will run the groups, providing practical support and specialist educational input to fledgling user groups, and supporting organisations to adapt existing structures, roles, and relationships to the requirements of the new service model. Only when all this has been achieved can a definitive trial of the efficacy of the intervention be started.
Because the user groups are driven by individuals' stories and fuelled by their actions, each group will be different. This accords with contemporary thinking that whereas the core principles of a complex intervention (in this case, engaging the organisation, developing the advocate as an independent professional, using personal stories as a vehicle for learning, keeping the groups informal but structured, avoiding didactic teaching, and providing hands-on learning tasks) should be clearly set out, considerable scope should be allowed for varying the operational detail as teams on the ground adapt the intervention to local needs and circumstances (for example, when and how to approach key clinicians and managers, whether one or two advocates should be present in each user group, whether people can self refer to the group, and whether they can bring partners or friends).22 Depending on the qualifications, experience, andconfidence of the advocate leading the group, different levels of support will be needed from a clinician (such as a diabetes specialist nurse).
What is already known on this topic
Conventional diabetes education is often inaccessible to patients who do not speak English, and may be culturally inappropriate
Bangladeshi patients with diabetes attribute health related lifestyle changes to stories told by other Bangladeshis
What this study adds
Diabetes support and education groups led by bilingual health advocates and using a "sharing stories" format are popular with staff and service users
"Learning set" style training based on stories about clients increases advocates' confidence and skill in running these groups
Organisational support is needed to implement this service model
A theoretical limitation of user groups led by non-clinicians is the danger that incorrect and even dangerous clinical advice might be shared in the group. We did not encounter any such examples in the groups we studied. Most discussion focused on standard diabetes education topics (diagnosis, diet, exercise, check ups) and comprised making sense of complex situations (see example in box 3) and exchanging "how to" advice (cook brown rice, swim in long dresses, and so on). The groups proved surprisingly skilled at identifying areas in which advice from clinicians was needed and sought this readily. Nevertheless, this potential limitation should be a focus of inquiry in the next phase of the research.
Our qualitative findings suggest that the mechanism by which group participation might achieve positive outcomes is not principally through acquisition of knowledge (although this is clearly important) but by providing a forum in which participants can negotiate the meaning of knowledge and by prompting action. Although it is often assumed that education occurs by the transmission of knowledge from an educator to learners,4 the reality in both the advocate learning set and the user groups was that knowledge was repeatedly discussed, reframed, and challenged by the group, and only then made meaningful for the participants. As Friere put it, "Knowledge emerges only through invention and reinvention, through the restless, impatient, continuing, hopeful inquiry men pursue in the world, with the world, and with each other."23 Denning (among others) has written of the powerful link between storytelling in group situations and subsequent action by individual participants.24 Because of the detailed analysis of what actually went on in the groups, this study has contributed considerably to the research literature on group based education in diabetes (summarised on bmj.com).
In conclusion, this study has provided unique insights into the feasibility of setting up diabetes support and education groups for both bilingual health advocates and service users and into the process of learning, empowerment, and change in such groups. The impact of the intervention should now be tested in a randomised controlled trial.
Two extra tables and a summary of evidence on diabetes groups are on bmj.com
We thank the service users, bilingual health advocates, and many other stakeholders who participated so enthusiastically in setting up and evaluating the groups described here. Their names are listed in the "Sharing stories" workbook. We especially thank John Eversley, Jill Russell, Anita Berlin, and Farida Malik for conceptual and practical input at different stages.
Contributors: TG and AC had the idea for the study and developed it in partnership with the multiple stakeholders referred to in the text. All authors shared the fieldwork. NB translated and transcribed tape recorded evaluation sessions. TG wrote the paper.
Funding: The study was funded by Diabetes UK.
Competing interests: None declared.
Ethical approval: The local research ethics committee approved the study.
References
Greenhalgh T, Griffiths T, Thomas K, Wheeler J, Raleigh V. Reducing inequalities in diabetes: report of the Expert Reference Group for the National Service Framework for Diabetes. London: Department of Health, 2001.
Nazroo NY. The health of Britain's ethnic minorities. London: Policy Studies Institute, 1997.
Blaxter M. Black and minority ethnic groups in England: health and lifestyles. London: Health Education Authority, 1994.
Norris SL, Engelgau MM, Narayan KMV. Effectiveness of self-management training in type 2 diabetes. Diabetes Care 2001;24: 561-87.
Loveman E, Cave C, Green C, Royle P, Dunn N, Waugh N. The clinical and cost-effectiveness of patient education models for diabetes: a systematic review and economic evaluation. Health Technol Assess 2003;7(22): iii, 1-190.
Krichbaum K, Aarestad V, Buethe M. Exploring the connection between self-efficacy and effective diabetes self-management. Diabetes Educ 2003;29: 653-62.
Steed L, Cooke D, Newman S. A systematic review of psychosocial outcomes following education, self-management and psychological interventions in diabetes mellitus. Patient Educ Couns 2003;51: 5-15.
Greenhalgh T, Helman C, Chowdhury AM. Health beliefs and folk models of diabetes in British Bangladeshis: a qualitative study. BMJ 1998;316: 978-83.
Greenhalgh T. Integrating qualitative research into evidence based practice: development and evaluation of a complex intervention in diabetes. Endocrinol Metab Clin North Am 2002;31: 583-601.
Meyer J. Using qualitative methods in health related action research. BMJ 2000;320: 178-81.
Waterman H, Tillen D, Dickson R, de Koning K. Action research: a systematic review and guidance for assessment. Health Technol Assess 2001;5(23): iii, 1-157.
Greenhalgh T, Collard A, Begum N. `Sharing stories': an action research project to develop group education in diabetes for health advocates and `hard to reach' service users. Pract Diabetes Int 2005;in press.
Glaser BG, Strauss AL. The constant comparative method of qualitative analysis. In: The discovery of grounded theory. Chicago: Adline, 1967.
Waterman H. Embracing ambiguities and valuing ourselves: issues of validity in action research. J Adv Nurs 1998;28: 101-5.
Eve R. Learning with PUNs and DENs—a method for determining educational needs and the evaluation of its use in primary care. Education for General Practice 2000;11: 79.
Greenhalgh T, Collard A. Sharing stories—a new approach to multiprofessional training in diabetes care. London: BMJ Publishing Group, 2003.
Fraser SW, Greenhalgh T. Coping with complexity: educating for capability. BMJ 2001;323: 799-803.
Kolb DA. The process of experiential learning. In: Thorpe M, Edwards R, Hanson A, eds. Culture and processes of adult learning. London: Routledge, 1993: 138-56.
Elwyn G, Greenhalgh T, Macfarlane F. Groups—a hands-on guide to small group work in education, management and research. Oxford: Radcliffe, 2000.
Greenhalgh T. Storytelling should be targeted where it is known to have greatest added value. Med Educ 2001;35: 818-9.
Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D, et al. Framework for design and evaluation of complex interventions to improve health. BMJ 2000;321: 694-6.
Hawe P, Shiell A, Riley T. Complex interventions: how "out of control" can a randomised controlled trial be? BMJ 2004;328: 1561-3.
Friere P. Education for critical consciousness. New York: Continuum, 1974.
Denning S. The springboard: how storytelling ignites action in knowledge-era organisations. New York: Butterworth-Heinemann, 2000.(Trisha Greenhalgh, professor of primary )
Correspondence to: T Greenhalgh p.greenhalgh@pcps.ucl.ac.uk
The action research cycle, described in detail elsewhere,12 is in some ways similar to the audit cycle, in that data are systematically and successively collected in order to evaluate progress towards a series of planned changes. The different phases of this study had different goals, used different methods, and were evaluated through different data sources, as summarised in table 1. In addition, we asked an independent qualitative researcher to conduct semistructured interviews with all the research team one year into the project and again 18 months later. These interviews, and the focus group evaluations of the advocate groups and user groups, were audiotaped, transcribed, and analysed for themes by using the constant comparative method13; further details of the analysis are available on request. We combined the different qualitative and quantitative data sources in each phase to build up a rich picture of the problem area and inform the design of the next phase of action.
Table 1 Phases of the study and data collected
Results
This study has shown that action research is a feasible way of developing complex interventions involving combinations of service redesign, professional development, and user education. Complex interventions need an extensive development phase to optimise the components, implement delivery (including staff training), and develop model explanations of mechanism before being tested in randomised controlled trials.21 Progressively changing the focus of activity in response to participants' needs and priorities is an inherent feature of the action research design and allows continual refinement of the intervention as the study unfolds.11 This leads to both immediate benefits for research participants and an "optimised" intervention suitable for testing in clinical trials.
Although the bilingual health advocate led diabetes support group is a simple and appealing concept, we have shown that setting up such groups involves at least three separate components. Considerable effort must be put into training the advocates who will run the groups, providing practical support and specialist educational input to fledgling user groups, and supporting organisations to adapt existing structures, roles, and relationships to the requirements of the new service model. Only when all this has been achieved can a definitive trial of the efficacy of the intervention be started.
Because the user groups are driven by individuals' stories and fuelled by their actions, each group will be different. This accords with contemporary thinking that whereas the core principles of a complex intervention (in this case, engaging the organisation, developing the advocate as an independent professional, using personal stories as a vehicle for learning, keeping the groups informal but structured, avoiding didactic teaching, and providing hands-on learning tasks) should be clearly set out, considerable scope should be allowed for varying the operational detail as teams on the ground adapt the intervention to local needs and circumstances (for example, when and how to approach key clinicians and managers, whether one or two advocates should be present in each user group, whether people can self refer to the group, and whether they can bring partners or friends).22 Depending on the qualifications, experience, andconfidence of the advocate leading the group, different levels of support will be needed from a clinician (such as a diabetes specialist nurse).
What is already known on this topic
Conventional diabetes education is often inaccessible to patients who do not speak English, and may be culturally inappropriate
Bangladeshi patients with diabetes attribute health related lifestyle changes to stories told by other Bangladeshis
What this study adds
Diabetes support and education groups led by bilingual health advocates and using a "sharing stories" format are popular with staff and service users
"Learning set" style training based on stories about clients increases advocates' confidence and skill in running these groups
Organisational support is needed to implement this service model
A theoretical limitation of user groups led by non-clinicians is the danger that incorrect and even dangerous clinical advice might be shared in the group. We did not encounter any such examples in the groups we studied. Most discussion focused on standard diabetes education topics (diagnosis, diet, exercise, check ups) and comprised making sense of complex situations (see example in box 3) and exchanging "how to" advice (cook brown rice, swim in long dresses, and so on). The groups proved surprisingly skilled at identifying areas in which advice from clinicians was needed and sought this readily. Nevertheless, this potential limitation should be a focus of inquiry in the next phase of the research.
Our qualitative findings suggest that the mechanism by which group participation might achieve positive outcomes is not principally through acquisition of knowledge (although this is clearly important) but by providing a forum in which participants can negotiate the meaning of knowledge and by prompting action. Although it is often assumed that education occurs by the transmission of knowledge from an educator to learners,4 the reality in both the advocate learning set and the user groups was that knowledge was repeatedly discussed, reframed, and challenged by the group, and only then made meaningful for the participants. As Friere put it, "Knowledge emerges only through invention and reinvention, through the restless, impatient, continuing, hopeful inquiry men pursue in the world, with the world, and with each other."23 Denning (among others) has written of the powerful link between storytelling in group situations and subsequent action by individual participants.24 Because of the detailed analysis of what actually went on in the groups, this study has contributed considerably to the research literature on group based education in diabetes (summarised on bmj.com).
In conclusion, this study has provided unique insights into the feasibility of setting up diabetes support and education groups for both bilingual health advocates and service users and into the process of learning, empowerment, and change in such groups. The impact of the intervention should now be tested in a randomised controlled trial.
Two extra tables and a summary of evidence on diabetes groups are on bmj.com
We thank the service users, bilingual health advocates, and many other stakeholders who participated so enthusiastically in setting up and evaluating the groups described here. Their names are listed in the "Sharing stories" workbook. We especially thank John Eversley, Jill Russell, Anita Berlin, and Farida Malik for conceptual and practical input at different stages.
Contributors: TG and AC had the idea for the study and developed it in partnership with the multiple stakeholders referred to in the text. All authors shared the fieldwork. NB translated and transcribed tape recorded evaluation sessions. TG wrote the paper.
Funding: The study was funded by Diabetes UK.
Competing interests: None declared.
Ethical approval: The local research ethics committee approved the study.
References
Greenhalgh T, Griffiths T, Thomas K, Wheeler J, Raleigh V. Reducing inequalities in diabetes: report of the Expert Reference Group for the National Service Framework for Diabetes. London: Department of Health, 2001.
Nazroo NY. The health of Britain's ethnic minorities. London: Policy Studies Institute, 1997.
Blaxter M. Black and minority ethnic groups in England: health and lifestyles. London: Health Education Authority, 1994.
Norris SL, Engelgau MM, Narayan KMV. Effectiveness of self-management training in type 2 diabetes. Diabetes Care 2001;24: 561-87.
Loveman E, Cave C, Green C, Royle P, Dunn N, Waugh N. The clinical and cost-effectiveness of patient education models for diabetes: a systematic review and economic evaluation. Health Technol Assess 2003;7(22): iii, 1-190.
Krichbaum K, Aarestad V, Buethe M. Exploring the connection between self-efficacy and effective diabetes self-management. Diabetes Educ 2003;29: 653-62.
Steed L, Cooke D, Newman S. A systematic review of psychosocial outcomes following education, self-management and psychological interventions in diabetes mellitus. Patient Educ Couns 2003;51: 5-15.
Greenhalgh T, Helman C, Chowdhury AM. Health beliefs and folk models of diabetes in British Bangladeshis: a qualitative study. BMJ 1998;316: 978-83.
Greenhalgh T. Integrating qualitative research into evidence based practice: development and evaluation of a complex intervention in diabetes. Endocrinol Metab Clin North Am 2002;31: 583-601.
Meyer J. Using qualitative methods in health related action research. BMJ 2000;320: 178-81.
Waterman H, Tillen D, Dickson R, de Koning K. Action research: a systematic review and guidance for assessment. Health Technol Assess 2001;5(23): iii, 1-157.
Greenhalgh T, Collard A, Begum N. `Sharing stories': an action research project to develop group education in diabetes for health advocates and `hard to reach' service users. Pract Diabetes Int 2005;in press.
Glaser BG, Strauss AL. The constant comparative method of qualitative analysis. In: The discovery of grounded theory. Chicago: Adline, 1967.
Waterman H. Embracing ambiguities and valuing ourselves: issues of validity in action research. J Adv Nurs 1998;28: 101-5.
Eve R. Learning with PUNs and DENs—a method for determining educational needs and the evaluation of its use in primary care. Education for General Practice 2000;11: 79.
Greenhalgh T, Collard A. Sharing stories—a new approach to multiprofessional training in diabetes care. London: BMJ Publishing Group, 2003.
Fraser SW, Greenhalgh T. Coping with complexity: educating for capability. BMJ 2001;323: 799-803.
Kolb DA. The process of experiential learning. In: Thorpe M, Edwards R, Hanson A, eds. Culture and processes of adult learning. London: Routledge, 1993: 138-56.
Elwyn G, Greenhalgh T, Macfarlane F. Groups—a hands-on guide to small group work in education, management and research. Oxford: Radcliffe, 2000.
Greenhalgh T. Storytelling should be targeted where it is known to have greatest added value. Med Educ 2001;35: 818-9.
Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D, et al. Framework for design and evaluation of complex interventions to improve health. BMJ 2000;321: 694-6.
Hawe P, Shiell A, Riley T. Complex interventions: how "out of control" can a randomised controlled trial be? BMJ 2004;328: 1561-3.
Friere P. Education for critical consciousness. New York: Continuum, 1974.
Denning S. The springboard: how storytelling ignites action in knowledge-era organisations. New York: Butterworth-Heinemann, 2000.(Trisha Greenhalgh, professor of primary )