Investigating preferences for support with life after stroke: a discrete choice experiment

Journal article


Burton, C., Fargher, E., Plumpton, C., Roberts, G.W, Owen, H. and Roberts, E. 2014. Investigating preferences for support with life after stroke: a discrete choice experiment. BMC Health Services Research. 14 (63). https://doi.org/10.1186/1472-6963-14-63
AuthorsBurton, C., Fargher, E., Plumpton, C., Roberts, G.W, Owen, H. and Roberts, E.
Abstract

Background
There is little evidence of service user preferences to guide the commissioning and improvement of services that support life after stroke. We report the first investigation of patients’ and family carers’ preferences for community services after stroke using a discrete choice experiment (DCE).

Methods
Two workshops with patients and family carers (n = 8) explored stroke experiences, identifying attributes important in shaping views about service design, and piloted data collection strategies. Attributes were group versus individual support; service provider; additional support for social and leisure activities; and the total time required to access services. Patients and family carers were recruited six months post stroke-onset (mean 331 days) from four stroke services, and invited to participate in the DCE. Patients’ general health (EQ5D) and functional dependence (Barthel Index) were also assessed. Of 474 eligible patients, 144 (30%) expressed an interest in the study, and 80 (56%) of these completed the survey questionnaire. 34 of 74 (46%) family carers recruited through patients completed the DCE.

Results
All four attributes were significant in shaping patients preferences for stroke support service delivery (p < 0.05), confirming the interpretation of workshop findings. Patients prefer help and support for emotional needs, communication problems and physical difficulties to be provided on an individual basis; and to be offered additional social and leisure activities that they are able to attend on their own. Patients would appear to prefer that voluntary organisations do not provide these services, although this may be linked to lack of experience of these services. Family carers would prefer help and support in their caring role on a one-to-one basis. Whilst health related quality of life is associated with preference for format of service, results were relatively consistent across sub-groups, with the exception of time since stroke, where social and leisure activities had a greater impact on preferences of established service users.

Conclusions
The data provide unique insights into how preferences for community services that support life after stroke are shaped. This information can be used to inform both service re-design, and barriers to implementation that will need to be accounted for in policy shifts towards a more mixed economy of service provision.

KeywordsStroke
Year2014
JournalBMC Health Services Research
Journal citation14 (63)
PublisherBioMed Central
ISSN1472-6963
Digital Object Identifier (DOI)https://doi.org/10.1186/1472-6963-14-63
Official URLhttp://doi.org/10.1186/1472-6963-14-63
Publication dates
Print08 Feb 2014
Publication process dates
Accepted28 Jan 2014
Deposited10 Jun 2020
Output statusPublished
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Brocklehurst, P.R., Williams, L., Burton, C., Goodwin, T. and Rycroft-Malone, J. 2017. Implementation and trial evidence: a plea for fore-thought. British Dental Journal. 222 (5), pp. 331-335. https://doi.org/10.1038/sj.bdj.2017.213
What works for whom in the management of diabetes in people living with dementia: a realist review
Bunn, F., Goodman, C., Jones, P. R., Russell, B., Trivedi, D., Sinclair, A., Bayer, A., Rait, G., Rycroft-Malone, J. and Burton, C. 2017. What works for whom in the management of diabetes in people living with dementia: a realist review. BMC Medicine. 15 (141). https://doi.org/10.1186/s12916-017-0909-2
Improving skills and care standards in the support workforce for older people: a realist synthesis of workforce development interventions
Rycroft-Malone, J., Burton, C., Williams, L., Edwards, S., Fisher, D., Hall, B., McCormack, B., Nutley, S., Seddon, D. and Williams, R. 2016. Improving skills and care standards in the support workforce for older people: a realist synthesis of workforce development interventions. National Institute of Health Research. https://doi.org/10.3310/hsdr04120
Implementing a Systematic Voiding Program for Patients With Urinary Incontinence After Stroke
French, B., Thomas, L.H., Harrison, J., Burton, C., Forshaw, D., Booth, J., Britt, D., Cheater, F.M., Roe, B. and Watkins, C.L. 2016. Implementing a Systematic Voiding Program for Patients With Urinary Incontinence After Stroke. Qualitative Health Research. 26 (10). https://doi.org/10.1177/1049732316630975
Implementing best practice in infection prevention and control. A realist evaluation of the role of intermediaries
Williams, L., Rycroft-Malone, J. and Burton, C. 2016. Implementing best practice in infection prevention and control. A realist evaluation of the role of intermediaries. International Journal of Nursing Studies. 60, pp. 156-167. https://doi.org/10.1016/j.ijnurstu.2016.04.012
Bringing critical realism to nursing practice: Roy Bhaskar's contribution
Williams, L., Rycroft-Malone, J. and Burton, C. 2016. Bringing critical realism to nursing practice: Roy Bhaskar's contribution. nursing philosophy: an international journal for healthcare professionals. 18 (2). https://doi.org/10.1111/nup.12130
Managers' use of nursing workforce planning and deployment technologies: protocol for a realist synthesis of implementation and impact
Burton, C., Rycroft-Malone, J., Williams, L., Davies, S., McBride, A., Hall, B., Rowlands, A.M. and Jones, A. 2016. Managers' use of nursing workforce planning and deployment technologies: protocol for a realist synthesis of implementation and impact. BMJ Open. 6 (8). https://doi.org/10.1136/bmjopen-2016-013645
Improving skills and care standards in the support workforce for older people: a realist synthesis of workforce development interventions
Williams, L., Rycroft-Malone, J., Burton, C., Edwards,S., Fisher, D., Hall, B., McCormack, B., Nutley, S.M., Seddon, D. and Williams, R. 2016. Improving skills and care standards in the support workforce for older people: a realist synthesis of workforce development interventions. BMJ Open. 6 (8). https://doi.org/10.1136/bmjopen-2016-011964
Strategies to prevent oral disease in dependent older people
Brocklehurst, P., Williams, L., Hoare, Z., Goodwin, T., McKenna, G., Tsakos, G., Chestnutt, I.G., Pretty, I., Wassall, R., Jerkovic-Cosic, K., Hayes, M., Watt, R.G. and Burton, C. 2016. Strategies to prevent oral disease in dependent older people. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD012402
Process evaluations in neurological rehabilitation: a mixed-evidence systematic review and recommendations for future research
Masterson-Algar, P., Burton, C. and Rycroft-Malone, J. 2016. Process evaluations in neurological rehabilitation: a mixed-evidence systematic review and recommendations for future research. BMJ Open. 6 (11). https://doi.org/10.1136/bmjopen-2016-013002
Managing diabetes in people with dementia: protocol for a realist review
Bunn, F., Goodman, C., Rycroft Malone, J., Reece Jones, P., Burton, C., Rait, G., Trivedi, D., Bayer, A. and Sinclair, A. 2016. Managing diabetes in people with dementia: protocol for a realist review. Systematic Reviews. 5 (5). https://doi.org/10.1186/s13643-015-0182-4
Collaboration and co-production knowledge in healthcare: opportunities and challenges
Rycroft-Malone, J., Burton, C.R., Bucknall , T., Graham, I.D., Hutchinson, A. and Stacey, D. 2016. Collaboration and co-production knowledge in healthcare: opportunities and challenges. International Journal of Health Policy and Management. 5 (4), pp. 221-223. https://doi.org/10.15171/IJHPM.2016.08
Collective action for implementation: a realist evaluation of organisational collaboration in healthcare
Rycroft-Malone, J., Burton, C.R., Wilkinson, J., Harvey, G., McCormack, B., Baker, R., Dopson, S., Graham, I.D., Staniszewska, S., Thompson, C., Ariss, S., Melville-Richards, L. and Williams , L. 2016. Collective action for implementation: a realist evaluation of organisational collaboration in healthcare. Implementation Science : IS. 11 (17). https://doi.org/10.1186/s13012-016-0380-z
An occupational therapy intervention for residents with stroke-related disabilities in UK care homes (OTCH): cluster randomised controlled trial with economic evaluation
Sackley, C.M., Walker, M.F., Burton, C.R., Watkins,C.L, Mant, J., Roalfe, A.K., Wheatley, K., Sheehan, B., Sharp, L., Stant, K.E., Fletcher-Smith, J., Steel, K., Barton, G.R., Irvine, L. and Peryer, G. 2016. An occupational therapy intervention for residents with stroke-related disabilities in UK care homes (OTCH): cluster randomised controlled trial with economic evaluation. Health Technology Assessment. 20 (15). https://doi.org/10.3310/hta20150
Identifying Continence OptioNs after Stroke (ICONS): an evidence synthesis, case study and exploratory cluster randomised controlled trial of the introduction of a systematic voiding programme for patients with urinary incontinence after stroke in secondary care
Thomas, L. H., French, B., Sutton, C. J., Forshaw, D., Leathley, M. J., Burton, C., Roe, B., Cheater, F. M., Booth, J., McColl, E., Carter, B., Walker, A., Brittain, K., Whiteley, G., Rodgers, H., Barrett, J. and Watkins, C. L. 2015. Identifying Continence OptioNs after Stroke (ICONS): an evidence synthesis, case study and exploratory cluster randomised controlled trial of the introduction of a systematic voiding programme for patients with urinary incontinence after stroke in secondary care. NIHR Journals Library.
Collective action for knowledge mobilisation: a realist evaluation of the collaborations for leadership in applied health research and care
Rycroft-Malone, J., Burton, C., Wilkinson, J., Harvey, G., McCormack, B., Baker, R., Dopson, S., Graham, I., Staniszewska, S., Thompson, C., Ariss, S., Melville-Richards, L. and Williams, L. 2015. Collective action for knowledge mobilisation: a realist evaluation of the collaborations for leadership in applied health research and care. UK NIHR Journals Library. https://doi.org/10.3310/hsdr03440
An untapped resource: patient and public involvement in implementation comment on "Knowledge mobilization in healthcare organizations": a view from the resource-based view of the firm
Burton, C. and Rycroft-Malone, J. 2015. An untapped resource: patient and public involvement in implementation comment on "Knowledge mobilization in healthcare organizations": a view from the resource-based view of the firm. International Journal of Health Policy and Management. 4 (12), pp. 845-847. https://doi.org/10.15171/ijhpm.2015.150
Evaluating a systematic voiding programme for patients with urinary incontinence after stroke in secondary care using soft systems analysis and Normalisation Process Theory: findings from the ICONS case study phase.International journal of nursing studies
Thomas, L.H, French, B., Burton, C., Sutton, C., Forshaw, D., Dickinson, H., Leathley, M.J., Britt, D., Roe, B., Cheater, F.M, Booth, J., Watkins, C.L, ICONS Project Team, ICONS Patient and Public and Carer Involvement Groups 2014. Evaluating a systematic voiding programme for patients with urinary incontinence after stroke in secondary care using soft systems analysis and Normalisation Process Theory: findings from the ICONS case study phase.International journal of nursing studies. International Journal of Nursing Studies. 51 (10), pp. 1308-1320. https://doi.org/10.1016/j.ijnurstu.2014.02.009
Improving skills and care standards in the support workforce for older people: a realist review
Rycroft-Malone, J., Burton, C., Hall, B., McCormack, B., Nutley, S., Seddon, D. and Williams, L. 2014. Improving skills and care standards in the support workforce for older people: a realist review. BMJ Open. 4 (5). https://doi.org/10.1136/bmjopen-2014-005356
Does self-efficacy influence recovery and well-being in osteoarthritis patients undergoing joint replacement? A systematic review
Magklara, E., Burton, C. and Morrison, V. 2014. Does self-efficacy influence recovery and well-being in osteoarthritis patients undergoing joint replacement? A systematic review. Clinical Rehabilitation. 28 (9). https://doi.org/10.1177/0269215514527843
Towards a programme theory for fidelity in the evaluation of complex interventions.
Masterson-Algar, P., Burton, C., Rycroft-Malone, J., Sackley, C.M. and Walker, M.F. 2014. Towards a programme theory for fidelity in the evaluation of complex interventions. Journal of Evaluation in Clinical Practice . 20 (4), pp. 445 - 452. https://doi.org/10.1111/jep.12174
Investigating the organisational impacts of quality improvement: a protocol for a realist evaluation of improvement approaches drawing on the Resource Based View of the Firm.
Burton, C., Rycroft Malone, J., Robert, G., Willson, A. and Hopkins, A. 2014. Investigating the organisational impacts of quality improvement: a protocol for a realist evaluation of improvement approaches drawing on the Resource Based View of the Firm. BMJ Open. 4:e005650. https://doi.org/10.1136/bmjopen-2014-005650
Resource based view of the firm as a theoretical lens on the organisational consequences of quality improvement.
Burton, C. and Rycroft-Malone, J. 2014. Resource based view of the firm as a theoretical lens on the organisational consequences of quality improvement. International Journal of Health Policy and Management. 3 (3), pp. 113 - 115. https://doi.org/10.15171/ijhpm.2014.74
The study protocol of: 'Initiating end of life care in stroke: clinical decision-making around prognosis'.
Burton, C., Payne, S., Turner, M., Bucknall, T., Rycroft-Malone, J., Tyrell, P., Horne, M., Ntambwe, L.I., Tyson, S., Mitchell, H., Williams, S. and Elghenzai, S. 2014. The study protocol of: 'Initiating end of life care in stroke: clinical decision-making around prognosis'. BMC Palliative Care. 13 (55). https://doi.org/10.1186/1472-684X-13-55
Identifying continence options after stroke (ICONS): a cluster randomised controlled feasibility trial.
Thomas, L.H., Watkins, C.L., Sutton, C.J., Forshaw, D., Leathley, M.J., French, B., Burton, C., Cheater, F., Roe, B., Britt, D., Booth, J., McColl, E., The ICONS Project Team and The ICONS Patient, Public and Carer Involvement Groups 2014. Identifying continence options after stroke (ICONS): a cluster randomised controlled feasibility trial. Trials. 15 (509). https://doi.org/10.1186/1745-6215-15-509
What is rehabilitation potential? Development of a theoretical model through the accounts of healthcare professionals working in stroke rehabilitation services
Burton, C.R., Horne, M., Woodward-Nutt, K., Bowen, A. and Tyrrell, P. 2014. What is rehabilitation potential? Development of a theoretical model through the accounts of healthcare professionals working in stroke rehabilitation services. Disability and Rehabilitation. 37 (21), pp. 1955-1960. https://doi.org/10.3109/09638288.2014.991454