Developing a model of participatory research involving researchers, practitioners, older people and their family carers: An international collaboration

Journal of Research in Nursing

Volumn 11, Issue 4, 2006, Pages 325-342

  Hanson, Elizabeth ^a   Magnusson, Lennart ^a   Nolan, Janet ^b   Nolan, Mike ^a  

^a UNIVERSITY OF BORÅS   (Sweden)

^b UNIVERSITY OF SHEFFIELD   (United Kingdom)

Author keywords

constructivism; evidence based practice; older people; participatory research

Indexed keywords

ARTICLE; CASE REPORT; CLINICAL ARTICLE; EVIDENCE BASED PRACTICE CENTER; HUMAN; ORGANIZATION; PARTICIPATORY RESEARCH; PHYSICIAN; SCIENTIST; SOCIAL CARE; SWEDEN; TENSION; UNITED KINGDOM;

EID: 84990342738     PISSN: 17449871     EISSN: None     Source Type: Journal    
DOI: 10.1177/1744987106065829     Document Type: Article

References (57)

1. Andersson, B.-A., Hanson, E., Magnusson, L., Lidskog, R., Holm, K. (2002a) Information Centre for older people and their family carers. Final report to the Ministry of Social Affairs, Stockholm, Sweden. (In Swedish) Informationscentrum för äldre och närstående i Sjuhärad. Slutrapport till Socialdepartementet.
2. Andersson, B.-A., Hanson, E., Magnusson L. (2002b) Views of family carers and older people of information technology. British Journal of Nursing 11: 827-831.
3. Archbold, P. G., Stewart, B. J., Miller, L. L., Harvath, T. A., Greenlick, M. R., Van Buren, L., Kirschling, J. M., Valanis, B. G., Brody, K. K., Schook, J. E., Hagan, J. M. (1995) The PREP system of nursing interventions: a pilot test with families caring for older members. Research in Nursing Health 18: 1-16.
4. Audit Commission (2004) Support for Carers of Older People. Available from: www.audit-commission.gov.uk.
5. Banks, P. (2004) Policy Framework for Integrated Care for Older People (developed on behalf of the CARMEN Network). London: King’s Fund.
6. Barnes, M. (1999) Public Expectations: From Paternalism to Partnership, Changing Relationships in Health and Health Services. Policy Futures for UK Health, No. 10, London: Nuffield Trust.
7. Barnes, M. (2002) Bringing differences into deliberation? Disabled people, survivors and local governance. Policy and Politics 20:3, 319-331.
8. Bernard, M., Phillips, J. (2000) The challenge of ageing in tomorrow’s Britain. Ageing and Society 20:1, 33-54.
9. Bradbury, H., Reason, P. (2001) Conclusion: broadening the bandwidth of validity: issues and choice-points for improving the quality of action research. In: Reason, P., Bradbury. H. (eds) Handbook of Action Research: Participative Inquiry and Practice. London: Sage, pp. 447-456.
10. Brovall, C., Hanson, E., Magnusson, L. (2003) User focused discussion groups—developing palliative care for older people in Tranemo municipality. Final report Äldre Väst Sjuhärad Research Centre, University College of Borås, Borås, Sweden. (In Swedish). Brukare i samtal: utveckling av palliative vård för äldre i Tranemo kommun.
11. Brovall, C., Hanson, E., Magnusson, L., Gustafsson, G., Alexandersson, E., Alexandersson, S., Benjaminsson, A., Berg, Å., Blomqvist, A., Eriksson, I., Johansson, L., Lagerqvist, G., Lehtiranta, L., Lundgren, G., Skattberg, V., Sundqvist, N., Wernering, G. (2004) User focused policy standards in palliative and end of life care for older people and their families in Tranemo. Final report, ÄldreVäst Sjuhärad Research Centre, University College of Borås, Borås, Sweden. (In Swedish) Mål och policy vid palliativ vård och vård i livets slutskede för äldre och deras närstående i Tranemo-Ett gemensamt synsätt.
12. Charmaz, K. (2000) Grounded theory: objectivist and constructivist methods. In: Denzin, N. K., Lincoln, Y. S. (eds) Handbook of Qualitative Research, 2nd edn. Thousand Oaks: Sage, pp. 509-536.
13. Clough, E. (2005) Foreword. In: Burr, J., Nicolson, P. (eds) Researching Health Care Consumers, Critical Approaches. Basingstoke: Palgrave (MacMillan), pp. ix-xi.
14. Davies, S., Nolan, M.R. (eds) (2003) Nurturing research partnerships with older people and their carers: learning from experience. Special Edition of Quality in Ageing—Policy, Practice and Research 4: 4-4.
15. Dawes, M., Summerskill, W., Glasziou, P., Cartabellotta, A., Martin, J., Hopayian, K., Porzsolt, F., Burks, A., Orborne, J. (2005) Sicily statement on evidence-based practice. BMC Medical Education 5: 1-1.
16. Donaldson, L. (2003) Expert patient ushers in a new era of opportunity for the NHS. British Medical Journal 326: 1279-1280.
17. Gaventa, J., Cornwall, A. (2001) Power and knowledge. In: Reason, P., Bradbury, H. (eds) Handbook of Action Research: Participative Inquiry and Practice. London: Sage, pp. 70-80.
18. Guba, E. G., Lincoln, Y. S. (1989) Fourth Generation Evaluation. Newbury Park: Sage.
19. Hanson, E. J., Clarke, A. (2000) The role of telematics in assisting family carers and frail older people at home. Health and Social Care in the Community 8:2, 232-241.
20. Hanson, E., Magnusson, L. (2005) ‘Working together with persons with dementia to make a difference’, Research in Dementia Care Makes Difference—Nursing Research in Clinical Practice. The First International Conference in honour of ProfessorAstrid Norberg and Professor Bengt Winblad, Stockholm 18-20 September.
21. Hanson, E. J., Tetley, J., Clarke, A., (1999a) Respite care for frail older people and their family carers: concept analysis and user focus group findings of a pan European Nursing Research project. Journal of Advanced Nursing 30:6, 1396-1407.
22. Hanson, E. J., Tetley, J., Clarke, A. (1999b) A multimedia intervention to support family caregivers. The Gerontologist 39:6, 736-741.
23. Hanson, E., Andersson, B.-A., Magnusson, L., Lidskog, R., Holm, K. (2002) The ÄldreVäst Information Centre research and development project. British Journal of Nursing 11:14, 935-940.
24. Hanson, E., Nolan, J., Magnusson, L., Sennemark, E., Johansson, L., Nolan, M. R. (2006) COAT—The Carers Outcome Agreement Tool: a new approach to working with family carers. Getting Research into Practice (GRIP) Report No. 1, University of Sheffield.
25. Hanson, E., Winqvist, I., Magnusson, L., Sennemark, E. (2005) Meaningful day in a nursing home in Sjuhärad. Final report ÄldreVäst Sjuhärad Research Centre, University College of Borås, Borås, Sweden. (In Swedish) Meningsfull vardag i särskilt boende i Sjuhärad.
26. Harvath, T. A., Archbold, P. G., Stewart, B. J., Gadow, S., Kirschling, J. M., Miller, L., Hagan, J., Brody, K., Schook, J. (1994) Establishing partnerships with family caregivers: local and cosmopolitan knowledge. Journal of Gerontological Nursing 20:2, 29-35.
27. Holstein, M. B., Minkler, M. (2003) Self, society and the ‘new gerontology’. The Gerontologist 43:6), 787-796.
28. Humphries, B. (2003) What else counts as evidence in evidence-based social work? Social Work Education 22:1, 81-91.
29. Jennings, B. M., Loan, L. (2001) Misconceptions among nurses about evidence-based practice. Journal of Nursing Scholarship 33:2, 121-127.
30. Kitson, A. (2002) Recognising relationships: reflections on evidence-based practice. Nursing Inquiry 9:3, 179-186.
31. Kröger, T. (2003) ‘Families, work and social care in Europe: a qualitative study of care arrangements in Finland, France, Italy, Portugal and the UK’. SOCCARE Project Report 6. Available from: www.uta.fi/laitokset/sospol/soccare.
32. Lincoln, Y. S., Guba, E. G. (1985) Naturalistic Inquiry. Newbury Park: Sage.
33. Lincoln, Y. S., Guba, E. G. (2000) Paradigmatic controvercies, contradictions and emergency confluences. In: Denzin, N. K., Lincoln, Y. S. (eds) Handbook of Qualitative Research, 2nd edn. Thousand Oaks: Sage, pp. 163-188.
34. Magnusson, L., Hanson, E. (2002) Health and quality of life of older people with chronic illness: findings from the ÄVS survey. (In Swedish) Hälsa och livskvalitet för äldre med kroniska sjukdomar. Paper presentation at the ÄldreVäst Sjuhärad’s Regional Conference, ‘Hearing the voices of older people’—concerning older people’s health and living circumstances in Sjuhärad and West Sweden, 29 January, Borås, West Sweden.
35. Magnusson, L., Hanson, E. (2003) Ethical issues arising from a research, technology and development project to support frail older people and their family carers at home. Health and Social Care in the Community 11:5, 431-439.
36. Magnusson, L., Hanson, E. (2005) Supporting frail older people and their family carers living at home using Information and Communication Technology: a Swedish case study cost analysis. Journal of Advanced Nursing 51:6, 645-657.
37. Magnusson, L., Berthold, H., Hanson, E., Chambers, M., Daly, T. (1999) Carers tap into the information highway. Nursing Times 95:42, 48-50.
38. Magnusson, L., Hanson, E., Brito, L., Berthold, H., Chambers, M., Daly, T. (2002a) Supporting family carers through the use of information technology—the EU project ACTION. International Journal of Nursing Studies 39:4, 369-381.
39. Magnusson, L., Hanson, E., Nolan, M. R. (2002b) Assisting carers using the ACTION model for working with family carers. British Journal of Nursing 11:11, 759-763.
40. Magnusson, L., Hanson, E., Nolan, M. R. (2005a) The impact of information and communication technology on family carers of older people and professionals in Sweden. Ageing and Society 25:5, 693-714.
41. Magnusson, L., Hanson, E., Sennemark, E., Nolan, M.R., Nolan, J. (2005b) COAT (Carers’ Outcome Agreement Tool)—an instrument for individualised planning, follow-up and evaluation of family care support together with family carers. Final report, Board of Health & Welfare, Sweden (In Swedish). COAT—ett instrument för planering, uppföljning och utvärdering av anhörigstöd tillsammans med anhörigvårdare.
42. Nies, H. (2004) A European Research Agenda on Integrated Care for Older People (on behalf of the CARMEN Network). Dublin: European Health Management Association.
43. Nolan, M. R. (2005) What counts as research and whose research counts? Towards ‘authentic’ participatory inquiry. Plenary paper given at the RCN 2005 International Nursing Research Conference. Spires Conference Centre, Belfast, Northern Ireland, 8-11 March.
44. Nolan, M. R., Grant, G., Keady, J. (1996) Understanding Family Care: a Multidimensional Model of Caring and Coping. Buckingham: Open University Press.
45. Nolan, M. R., Grant, G., Keady, J. (1998) Assessing Carers’ Needs: a Practitioner’s Guide. Brighton: Pavilion Publications.
46. Nolan, M. R., Grant, G., Caldock, K., Keady, J., Iphofen, R., Jones, B. (1994) Walk a Mile in My Shoes: a Framework for Assessing the Needs of Family Carers. Bangor: Rapport Productions, in conjunction with the London Provincial Nursing Services and BASE.
47. Nolan, M. R., Hanson, E., Magnusson, L., Andersson, B. (2003) Gauging quality in constructivist research: the ÄldreVäst Sjuhärad model revisited. Quality in Ageing—Policy, Practice and Research 4:2, 22-27.
48. Nolan, M. R., Nolan, J., Hanson, E., Magnusson, L. (2005) The Carers Outcome Agreement Tool (COAT): Conceptualisation, Development and Field Testing. Symposium presented at: 18th World Congress of Gerontology, Rio de Janeiro, Brazil, June.
49. Owen, J. (2005) Users, research and ‘evidence’ in social care. In: Burr, J., Nicolson, P. (eds) Researching Health Care Consumers, Critical Approaches. Basingstoke: Palgrave (MacMillan), pp. 155-179.
50. Rodwell, M. (1998) Social Work Constructivist Research. New York: Garland.
51. Rolfe, G. (1999) Insufficient evidence: the problems of evidence-based nursing. NET 19: 433-442.
52. Ryecroft-Malone, J., Sears, K., Titchen, A., Harvey, G., Kitson, A., McCormack, B. (2004) What counts as evidence in evidence-based practice? Journal of Advanced Nursing 47:1, 81-90.
53. SCIE (2003) Media Release 25 March.
54. Scottish Executive/Office of Public Management (2005a) ‘The future of unpaid care in Scotland: headline report of recommendation.’ Report of the Care 21 Unit, Scottish Executive/OPM, London.
55. Sennemark, E., Hanson, E., Magnusson, L. (2004) ‘Of course, I have my children who come and visit me’—older peoples’ health and life situation; an interview study with elder service users in Sjuhärad. Final report, ÄldreVäst Sjuhärad Research Centre, University College of Borås, Borås, Sweden. (In Swedish) ‘Jag har ju barnen som kommer’. Äldres hälsa och levnadsvilkor; en intervjuundersökning med vård—och omsorgsberoende i Sjuhäradsbygden.
56. Tetley, J., Hanson, E. (2000) Participatory research. Nurse Researcher 8:1, 69-88.
57. Winqvist, I. and Hanson, E. (2005) A meaningful day in nursing homes. An overview of the literature. Working report. ÄldreVäst Sjuhärad Research Centre, University College of Borås, Borås, Sweden. (In Swedish) Meningsfull vardag i särskilt boende. En litteraturöversikt. Del rapport.