Skip to main content
Top
Published in: BMC Health Services Research 1/2018

Open Access 01-12-2018 | Study protocol

Intensive home care packages for people with dementia: a realist evaluation protocol

Authors: Fiona Keogh, Maria Pierce, Karen Neylon, Padraic Fleming

Published in: BMC Health Services Research | Issue 1/2018

Login to get access

Abstract

Background

Dementia presents a significant challenge to health systems and to the person and family affected. Home care is increasingly seen as a key service in addressing this challenge in a person-centred and cost-effective way. Intensive Home Care Packages (IHCPs) were introduced in Ireland to provide personalised and high levels of support for people with dementia to remain at home or be discharged home from hospital, and to build on the work of the HSE & Genio Dementia Programme. This realist evaluation is concerned with real world questions of feasibility and effectiveness; specifically understanding in what ways IHCPs work, how optimum outcomes are achieved, for whom and in what contexts do IHCPs work best.

Methods

A mixed-method, multi-stakeholder study was designed within a realist evaluation conceptual framework. The process evaluation includes semi-structured interviews with health service staff at all levels, social network analysis and secondary database analysis; the outcomes evaluation includes quantitative measures and qualitative data collected through in-depth interviews with people with dementia and family carers; and the cost evaluation includes analysis of data from the Resource Utilisation in Dementia (RUD). The four stage cycle of realist evaluation is adopted, with iterative rounds of theory formulation, data collection and theory testing throughout.

Discussion

This realist evaluation of a complex intervention involves a variety of data and perspectives in order to provide confidence in moving from hypothetical constructs about how IHCPs might work to explanations of potential or observable causal mechanisms. In spite of being a key form of service delivery in most healthcare systems, the ways in which home care works to produce the desired outcomes seems to be poorly understood. While there is much descriptive and comparative work, there is a lack of understanding regarding which patient groups might benefit most from home care, or the influence of different service or cultural contexts on outcomes from home care. As well as addressing the core research objectives, this study aims to make a contribution to the underlying theory of home care in ways that can progress our understanding of how outcomes are produced for home care recipients.
Literature
1.
go back to reference Bleijlevens MHC, Stolt M, Stephan A, Zabalegui A, Saks K, Sutcliffe C, Lethin C, Soto ME, Zwakhalen SMG. Changes in caregiver burden and health-related quality of life of informal caregivers of older people with dementia: evidence from the European RightTimePlaceCare prospective cohort study. J Adv Nurs. 2015;71(6):1378–91.CrossRef Bleijlevens MHC, Stolt M, Stephan A, Zabalegui A, Saks K, Sutcliffe C, Lethin C, Soto ME, Zwakhalen SMG. Changes in caregiver burden and health-related quality of life of informal caregivers of older people with dementia: evidence from the European RightTimePlaceCare prospective cohort study. J Adv Nurs. 2015;71(6):1378–91.CrossRef
2.
go back to reference Boland L, Légaré F, Perez MMB, Menear M, Garvelink MM, McIsaac DI, Guérard GP, Emond J, Brière N, Stacey D. Impact of home care versus alternative locations of care on elder health outcomes: an overview of systematic reviews. BMC Geriatr. 2017;17(1):20.CrossRef Boland L, Légaré F, Perez MMB, Menear M, Garvelink MM, McIsaac DI, Guérard GP, Emond J, Brière N, Stacey D. Impact of home care versus alternative locations of care on elder health outcomes: an overview of systematic reviews. BMC Geriatr. 2017;17(1):20.CrossRef
3.
go back to reference Brooks, Richard, and EuroQol Group. EuroQol: the current state of play. Health Policy. 1996;37(1):53–72.CrossRef Brooks, Richard, and EuroQol Group. EuroQol: the current state of play. Health Policy. 1996;37(1):53–72.CrossRef
4.
go back to reference Bucks RS, Ashworth DL, Wilcock GK, Siegfried K. Assessment of activities of daily living in dementia: development of the Bristol activities of daily living scale. Age Ageing. 1996;25(2):113–20.CrossRef Bucks RS, Ashworth DL, Wilcock GK, Siegfried K. Assessment of activities of daily living in dementia: development of the Bristol activities of daily living scale. Age Ageing. 1996;25(2):113–20.CrossRef
5.
go back to reference Byng R, Norman I, Redfern S. Using realistic evaluation to evaluate a practice-level intervention to improve primary healthcare for patients with long-term mental illness. Evaluation. 2005;11(1):69–93.CrossRef Byng R, Norman I, Redfern S. Using realistic evaluation to evaluate a practice-level intervention to improve primary healthcare for patients with long-term mental illness. Evaluation. 2005;11(1):69–93.CrossRef
6.
go back to reference Cahill S, O'Shea E, Pierce M. Creating Excellence in Dementia Care: A Research Review for Ireland's Forthcoming National Dementia Strategy. Dublin and Galway: Living with Dementia Priogramme, Trinity College Dublin and Irish Centre for Social Gerontology, National University of Ireland, Galway; 2012. Cahill S, O'Shea E, Pierce M. Creating Excellence in Dementia Care: A Research Review for Ireland's Forthcoming National Dementia Strategy. Dublin and Galway: Living with Dementia Priogramme, Trinity College Dublin and Irish Centre for Social Gerontology, National University of Ireland, Galway; 2012.
7.
go back to reference Clark CM, Ewbank DC. Performance of the dementia severity rating scale: a caregiver questionnaire for rating severity in Alzheimer disease. Alzheimer Dis Assoc Disord. 1996;10(1):31–9.PubMed Clark CM, Ewbank DC. Performance of the dementia severity rating scale: a caregiver questionnaire for rating severity in Alzheimer disease. Alzheimer Dis Assoc Disord. 1996;10(1):31–9.PubMed
10.
go back to reference Convery J. Slan Abhaile: the pilot phase. Dublin: Eastern Regional Health Authority; 2005. Convery J. Slan Abhaile: the pilot phase. Dublin: Eastern Regional Health Authority; 2005.
11.
go back to reference Dawson A, Bowes A, Kelly F, Velzke K, Ward R. Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach. BMC Geriatr. 2015;15(1):59.CrossRef Dawson A, Bowes A, Kelly F, Velzke K, Ward R. Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach. BMC Geriatr. 2015;15(1):59.CrossRef
12.
go back to reference Dempsey C, Normand C, Timonen V. Towards a more person-centred home care service: a study of preferences of older adults and home care workers. Administration. 2016;64(2):109–36.CrossRef Dempsey C, Normand C, Timonen V. Towards a more person-centred home care service: a study of preferences of older adults and home care workers. Administration. 2016;64(2):109–36.CrossRef
13.
go back to reference Department of Health. The Irish National Dementia Strategy. Dublin: Department of Health; 2014. Department of Health. The Irish National Dementia Strategy. Dublin: Department of Health; 2014.
14.
go back to reference Dewing J. Process consent and research with older persons with dementia. Res Ethics Rev. 2008;4(2):59–64.CrossRef Dewing J. Process consent and research with older persons with dementia. Res Ethics Rev. 2008;4(2):59–64.CrossRef
15.
go back to reference Fiss PC. A set-theoretic approach to organizational configurations. Acad Manag Rev. 2007;32(4):1180–98.CrossRef Fiss PC. A set-theoretic approach to organizational configurations. Acad Manag Rev. 2007;32(4):1180–98.CrossRef
16.
go back to reference Freeman, Linton. 2004. “The development of social network analysis”. A Study in the Sociology of Science 1. Freeman, Linton. 2004. “The development of social network analysis”. A Study in the Sociology of Science 1.
17.
go back to reference Genet N, Boerma WGW, Kringos DS, Bouman A, Francke AL, Fagerström C, Melchiorre MG, Greco C, Devillé W. Home care in Europe: a systematic literature review. BMC Health Serv Res. 2011;11(1):207.CrossRef Genet N, Boerma WGW, Kringos DS, Bouman A, Francke AL, Fagerström C, Melchiorre MG, Greco C, Devillé W. Home care in Europe: a systematic literature review. BMC Health Serv Res. 2011;11(1):207.CrossRef
18.
go back to reference Genio. HSE & Genio Programme 2012-2018. Dublin: Genio; 2016. Genio. HSE & Genio Programme 2012-2018. Dublin: Genio; 2016.
20.
go back to reference Group, The EuroQol. EuroQol-a new facility for the measurement of health-related quality of life. Health Policy. 1990;16(3):199–208.CrossRef Group, The EuroQol. EuroQol-a new facility for the measurement of health-related quality of life. Health Policy. 1990;16(3):199–208.CrossRef
21.
go back to reference Health Information and Quality Authority. Guidelines for the economic evaluation of health technologies in Ireland. HIQA: Dublin; 2018. Health Information and Quality Authority. Guidelines for the economic evaluation of health technologies in Ireland. HIQA: Dublin; 2018.
22.
go back to reference HSE. Interim standard operating procedure for intensive home care packages. Dublin: HSE; 2015. HSE. Interim standard operating procedure for intensive home care packages. Dublin: HSE; 2015.
23.
go back to reference Jackson SF, Kolla G. A new realistic evaluation method: linked coding of context, mechanism and outcomes relationships. Am J Evaluation. 2012;33(3):339–49.CrossRef Jackson SF, Kolla G. A new realistic evaluation method: linked coding of context, mechanism and outcomes relationships. Am J Evaluation. 2012;33(3):339–49.CrossRef
24.
go back to reference Kellogg Foundation WK. Using logic models to bring together planning, evaluation, and action: Logic model development guide. Battle Creek: W.K. Kellogg Foundation; 2004. Kellogg Foundation WK. Using logic models to bring together planning, evaluation, and action: Logic model development guide. Battle Creek: W.K. Kellogg Foundation; 2004.
25.
go back to reference Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, Ballard C, Banerjee S, Burns A, Cohen-Mansfield J, Cooper C, Fox N, Gitlin LN, Howard R, Kales HC, Larson EB, Ritchie K, Rockwood K, Sampson EL, Samus Q, Schneider LS, Selbæk G, Teri L, Mukadam N. Dementia prevention, intervention, and care. Lancet. 2017;S0140-6736(17):31363–6. https://doi.org/10.1016/S0140-6736(17)31363-6.CrossRef Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, Ballard C, Banerjee S, Burns A, Cohen-Mansfield J, Cooper C, Fox N, Gitlin LN, Howard R, Kales HC, Larson EB, Ritchie K, Rockwood K, Sampson EL, Samus Q, Schneider LS, Selbæk G, Teri L, Mukadam N. Dementia prevention, intervention, and care. Lancet. 2017;S0140-6736(17):31363–6. https://​doi.​org/​10.​1016/​S0140-6736(17)31363-6.CrossRef
26.
go back to reference Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer’s disease: patient and caregiver reports. J Ment Health Aging. 1999;5:21–32. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer’s disease: patient and caregiver reports. J Ment Health Aging. 1999;5:21–32.
27.
go back to reference Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64(3):510–9.CrossRef Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64(3):510–9.CrossRef
28.
go back to reference Manzano A. The craft of interviewing in realist evaluation. Evaluation. 2016;22(3):342–60.CrossRef Manzano A. The craft of interviewing in realist evaluation. Evaluation. 2016;22(3):342–60.CrossRef
29.
go back to reference Marchal B, Westhorp G, Wong G, Van Belle S, Greenhalgh T, Kegels G, Pawson R. Realist RCTs of complex interventions: an oxymoron. Soc Sci Med. 2013;94:124–8.CrossRef Marchal B, Westhorp G, Wong G, Van Belle S, Greenhalgh T, Kegels G, Pawson R. Realist RCTs of complex interventions: an oxymoron. Soc Sci Med. 2013;94:124–8.CrossRef
30.
go back to reference McHugh, S, ML Tracey, F Riordan, K O’Neill, N Mays, and PM Kearney. 2016. Evaluating the implementation of a national clinical programme for diabetes to standardise and improve services: a realist evaluation protocol. Implement Sci 11 (1):107.CrossRef McHugh, S, ML Tracey, F Riordan, K O’Neill, N Mays, and PM Kearney. 2016. Evaluating the implementation of a national clinical programme for diabetes to standardise and improve services: a realist evaluation protocol. Implement Sci 11 (1):107.CrossRef
32.
go back to reference NESF. Implementation of the home care package scheme. Dublin: NESF; 2009. NESF. Implementation of the home care package scheme. Dublin: NESF; 2009.
33.
go back to reference O'Brien I, Smuts K, Fan CW, O'Sullivan M, and Warters A. High prevalence of cognitive impairment among community dwelling older adults in receipt of state funded home care packages: implications for health care planning. Ir J Psychol Med; 2017. O'Brien I, Smuts K, Fan CW, O'Sullivan M, and Warters A. High prevalence of cognitive impairment among community dwelling older adults in receipt of state funded home care packages: implications for health care planning. Ir J Psychol Med; 2017.
34.
go back to reference O'Shea, E. “Funding Long-term Care in Ireland”. Citizens’ Assembly’s First Meeting on How We Best Respond to the Challenges and Opportunities of an Ageing Population, Dublin, 10–11 June 2017. 2017. O'Shea, E. “Funding Long-term Care in Ireland”. Citizens’ Assembly’s First Meeting on How We Best Respond to the Challenges and Opportunities of an Ageing Population, Dublin, 10–11 June 2017. 2017.
35.
go back to reference PA Consulting. Evaluation of home care packages. Dublin: Department of Health; 2009. PA Consulting. Evaluation of home care packages. Dublin: Department of Health; 2009.
36.
go back to reference Pawson R. Evidenced-based policy: a realist perspective. London: Sage; 2006.CrossRef Pawson R. Evidenced-based policy: a realist perspective. London: Sage; 2006.CrossRef
37.
go back to reference Pawson R. The science of evaluation: a realist manifesto. London: Sage; 2013.CrossRef Pawson R. The science of evaluation: a realist manifesto. London: Sage; 2013.CrossRef
38.
go back to reference Pawson R, Tilley N. Realist Evaluation. London: Sage; 1997. Pawson R, Tilley N. Realist Evaluation. London: Sage; 1997.
39.
go back to reference Pawson R, Tilley N. Realist evaluation. London: Cabinet Office; 2004. Pawson R, Tilley N. Realist evaluation. London: Cabinet Office; 2004.
40.
go back to reference Pearlin LI, Mullan JT, Semple SJ, and Skaff MM. Caregiving and the stress process: an overview of conecpts and their measures. Gerontologist. 1990;30(5):583–594.CrossRef Pearlin LI, Mullan JT, Semple SJ, and Skaff MM. Caregiving and the stress process: an overview of conecpts and their measures. Gerontologist. 1990;30(5):583–594.CrossRef
41.
go back to reference Plsek PE, Greenhalgh T. Complexity science: the challenge of complexity in health care. BMJ. 2001;323(7313):625.CrossRef Plsek PE, Greenhalgh T. Complexity science: the challenge of complexity in health care. BMJ. 2001;323(7313):625.CrossRef
42.
go back to reference Prince M, Wimo A, Geurchet M, Ali GC, Wu YT, Prina M. World Alzheimer report 2015 - the global impact of dementia: an analysis of prevalence, incidence, costs and trends. London: Alzheimer Disease International; 2015. Prince M, Wimo A, Geurchet M, Ali GC, Wu YT, Prina M. World Alzheimer report 2015 - the global impact of dementia: an analysis of prevalence, incidence, costs and trends. London: Alzheimer Disease International; 2015.
43.
go back to reference Ranmuthugala G, Cunningham FC, Plumb JJ, Long J, Georgiou A, Westbrook JI, Braithwaite J. A realist evaluation of the role of communities of practice in changing healthcare practice. Implement Sci. 2011;6(1):49.CrossRef Ranmuthugala G, Cunningham FC, Plumb JJ, Long J, Georgiou A, Westbrook JI, Braithwaite J. A realist evaluation of the role of communities of practice in changing healthcare practice. Implement Sci. 2011;6(1):49.CrossRef
44.
go back to reference Rothera I, Jones R, Harwood R, Avery AJ, Fisher K, James V, Shaw I, and Waite J. An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. Int J Geriat Psychiatry. 2008;23:65–72. https://doi.org/10.1002/gps.1841.CrossRef Rothera I, Jones R, Harwood R, Avery AJ, Fisher K, James V, Shaw I, and Waite J. An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. Int J Geriat Psychiatry. 2008;23:65–72. https://​doi.​org/​10.​1002/​gps.​1841.CrossRef
45.
go back to reference Sabat SR. Some potential benefits of creating research partnerships with people with Alzheimer’s disease. Res Policy Plan. 2003;21(2):5–12. Sabat SR. Some potential benefits of creating research partnerships with people with Alzheimer’s disease. Res Policy Plan. 2003;21(2):5–12.
46.
go back to reference Sampson EL, Blanchard MR, Jones L, Tookman A, King M. Dementia in the acute hospital: prospective cohort study of prevalence and mortality. Br J Psychiatry. 2009;195(1):61–6.CrossRef Sampson EL, Blanchard MR, Jones L, Tookman A, King M. Dementia in the acute hospital: prospective cohort study of prevalence and mortality. Br J Psychiatry. 2009;195(1):61–6.CrossRef
47.
go back to reference Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN. The self-administered comorbidity questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Care Res. 2003;49(2):156–63.CrossRef Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN. The self-administered comorbidity questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Care Res. 2003;49(2):156–63.CrossRef
49.
go back to reference Sherratt C, Soteriou T, Evans S. Ethical issues in social reserch involving people with dementia. Dementia. 2007;6(4):478–86.CrossRef Sherratt C, Soteriou T, Evans S. Ethical issues in social reserch involving people with dementia. Dementia. 2007;6(4):478–86.CrossRef
50.
go back to reference Tarricone R, Tsouros AD. Home care in Europe: the solid facts. Europe: WHO Regional Office; 2008. Tarricone R, Tsouros AD. Home care in Europe: the solid facts. Europe: WHO Regional Office; 2008.
51.
go back to reference Thomé B, Dykes A-K, Hallberg IR. Home care with regard to definition, care recipients, content and outcome: systematic literature review. J Clin Nurs. 2003;12(6):860–72.CrossRef Thomé B, Dykes A-K, Hallberg IR. Home care with regard to definition, care recipients, content and outcome: systematic literature review. J Clin Nurs. 2003;12(6):860–72.CrossRef
52.
go back to reference Timmons S, Manning E, Barrett A, Brady NM, Browne V, O'Shea E, Molloy DW, O'Regan N, Trawley S, Cahill S, O'Sullivan K, Woods N, Meagher D, Ni Chorcorain AM, Linehan JG. Dementia in older people admitted to hospital: a regional multi-hospital observational study of prevalence, associations and case recognition. Age Ageing. 2015. https://doi.org/10.1093/ageing/afv131.CrossRef Timmons S, Manning E, Barrett A, Brady NM, Browne V, O'Shea E, Molloy DW, O'Regan N, Trawley S, Cahill S, O'Sullivan K, Woods N, Meagher D, Ni Chorcorain AM, Linehan JG. Dementia in older people admitted to hospital: a regional multi-hospital observational study of prevalence, associations and case recognition. Age Ageing. 2015. https://​doi.​org/​10.​1093/​ageing/​afv131.CrossRef
53.
go back to reference Timonen V. Evaluation of homecare Grant schemes in NAHB and ECAHB. Dublin: Eastern Regional Health Authority; 2004. Timonen V. Evaluation of homecare Grant schemes in NAHB and ECAHB. Dublin: Eastern Regional Health Authority; 2004.
54.
go back to reference WHO. Dementia: a public health priority. Geneva: World Health Organization and Alzheimer Disease International; 2012. WHO. Dementia: a public health priority. Geneva: World Health Organization and Alzheimer Disease International; 2012.
55.
go back to reference Wimo A, Jonsson L, Zbrozek A. The resource utilization in dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Health Aging. 2010;14(8):685–90.CrossRef Wimo A, Jonsson L, Zbrozek A. The resource utilization in dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Health Aging. 2010;14(8):685–90.CrossRef
56.
57.
go back to reference Wimo A, Gustavsson A, Jönsson L, Winblad B, Hsu M-A, Gannon B. Application of resource utilization in dementia (RUD) instrument in a global setting. Alzheimers Dement. 2013;9(4):429–35 e17.CrossRef Wimo A, Gustavsson A, Jönsson L, Winblad B, Hsu M-A, Gannon B. Application of resource utilization in dementia (RUD) instrument in a global setting. Alzheimers Dement. 2013;9(4):429–35 e17.CrossRef
58.
go back to reference Wong G, Greenhalgh T, Westhorp G, Pawson R. Realist methods in medical education research: what are they and what can they contribute? Med Educ. 2012;46(1):89–96.CrossRef Wong G, Greenhalgh T, Westhorp G, Pawson R. Realist methods in medical education research: what are they and what can they contribute? Med Educ. 2012;46(1):89–96.CrossRef
59.
go back to reference Zarit, Steven H, Julie Bach-Peterson, and Karen E Reever. Burden Interview: The gerontologist. 1980a. Zarit, Steven H, Julie Bach-Peterson, and Karen E Reever. Burden Interview: The gerontologist. 1980a.
60.
go back to reference Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980b;20(6):649–55.CrossRef Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980b;20(6):649–55.CrossRef
61.
go back to reference Zarit, Steven, Nancy K Orr, and Judy M Zarit. The hidden victims of Alzheimer's disease: Families under stress. New York: NYU Press; 1985. Zarit, Steven, Nancy K Orr, and Judy M Zarit. The hidden victims of Alzheimer's disease: Families under stress. New York: NYU Press; 1985.
Metadata
Title
Intensive home care packages for people with dementia: a realist evaluation protocol
Authors
Fiona Keogh
Maria Pierce
Karen Neylon
Padraic Fleming
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2018
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-018-3630-8

Other articles of this Issue 1/2018

BMC Health Services Research 1/2018 Go to the issue