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Published in: BMC Medical Informatics and Decision Making 1/2012

Open Access 01-12-2012 | Research article

A qualitative study of professional and client perspectives on information flows and decision aid use

Authors: Christine Stirling, Barbara Lloyd, Jenn Scott, Jenny Abbey, Toby Croft, Andrew Robinson

Published in: BMC Medical Informatics and Decision Making | Issue 1/2012

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Abstract

Background

This paper explores the meanings given by a diverse range of stakeholders to a decision aid aimed at helping carers of people in early to moderate stages of dementia (PWD) to select community based respite services. Decision aids aim to empower clients to share decision making with health professionals. However, the match between health professionals' perspectives on decision support needs and their clients' perspective is an important and often unstudied aspect of decision aid use.

Methods

A secondary analysis was undertaken of qualitative data collected as part of a larger study. The data included twelve interviews with carers of people with dementia, three interviews with expert advisors, and three focus groups with health professionals. A theoretical analysis was conducted, drawing on theories of 'positioning' and professional identity.

Results

Health professionals are seen to hold varying attitudes and beliefs about carers' decision support needs, and these appeared to be grounded in the professional identity of each group. These attitudes and beliefs shaped their attitudes towards decision aids, the information they believed should be offered to dementia carers, and the timing of its offering. Some groups understood carers as needing to be protected from realistic information and consequently saw a need to filter information to carer clients.

Conclusion

Health professionals' beliefs may cause them to restrict information flows, which can limit carers' ability to make decisions, and limit health services' ability to improve partnering and shared decision making. In an era where information is freely available to those with the resources to access it, we question whether health professionals should filter information.
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Literature
2.
go back to reference Angus J, Miller K, Pulfer T, McKeever P: Studying delays in breast cancer diagnosis and treatment: critical realism as a new foundation for inquiry. Oncol Nurs Forum. 2006, 33: E62-E70. 10.1188/06.ONF.E62-E70.CrossRefPubMed Angus J, Miller K, Pulfer T, McKeever P: Studying delays in breast cancer diagnosis and treatment: critical realism as a new foundation for inquiry. Oncol Nurs Forum. 2006, 33: E62-E70. 10.1188/06.ONF.E62-E70.CrossRefPubMed
3.
go back to reference Callaghan GD, Wistow G: Publics, patients, citizens, consumers? Power and decision making in primary health care. Public Admin. 2006, 84: 583-601. 10.1111/j.1467-9299.2006.00603.x.CrossRef Callaghan GD, Wistow G: Publics, patients, citizens, consumers? Power and decision making in primary health care. Public Admin. 2006, 84: 583-601. 10.1111/j.1467-9299.2006.00603.x.CrossRef
4.
go back to reference Henderson S: Power imbalance between nurses and patients: a potential inhibitor of partnership in care. J Clin Nurs. 2003, 12: 501-508. 10.1046/j.1365-2702.2003.00757.x.CrossRefPubMed Henderson S: Power imbalance between nurses and patients: a potential inhibitor of partnership in care. J Clin Nurs. 2003, 12: 501-508. 10.1046/j.1365-2702.2003.00757.x.CrossRefPubMed
5.
go back to reference Elwyn G, Legare F, van der Wijden T, Edwards A, May C: 2008, 'Arduous implementation: does the normalisation process model explain why it's so difficult to embed decision support technologies for patients in routine clinical practice'. Implement Sci. 2011, 3 (57): doi:10.1186/1748-5908-3-57 Elwyn G, Legare F, van der Wijden T, Edwards A, May C: 2008, 'Arduous implementation: does the normalisation process model explain why it's so difficult to embed decision support technologies for patients in routine clinical practice'. Implement Sci. 2011, 3 (57): doi:10.1186/1748-5908-3-57
6.
go back to reference Gravel K, Legare F, Graham I: Barriers and facilitators to to implementing shared decision-making in clinical practice: a systematic review of health professionals' perceptions. Implement Sci. 2006, 1: 16-10.1186/1748-5908-1-16.CrossRefPubMedPubMedCentral Gravel K, Legare F, Graham I: Barriers and facilitators to to implementing shared decision-making in clinical practice: a systematic review of health professionals' perceptions. Implement Sci. 2006, 1: 16-10.1186/1748-5908-1-16.CrossRefPubMedPubMedCentral
7.
go back to reference O'Connor A, Bennett C, Stacey D, Barry M, Col N, Eden K, Entwistle V, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner D: Decision aids for people facing health treatment or screening decisions. Cochrane Db Syst Rev. 2009, doi: 10.1002/14651858.CD001431.pub2 O'Connor A, Bennett C, Stacey D, Barry M, Col N, Eden K, Entwistle V, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner D: Decision aids for people facing health treatment or screening decisions. Cochrane Db Syst Rev. 2009, doi: 10.1002/14651858.CD001431.pub2
8.
go back to reference Graham I, Logan J, Bennett C, Presseau J, O'Connor A, Mitchell S, Tetroe J, Cranney A, Hebert P, Aaron S: Physicians' intentions and use of three patient decision aids. BMC Med Inform and Decis Making. 2007, 7: 1-10.1186/1472-6947-7-1.CrossRef Graham I, Logan J, Bennett C, Presseau J, O'Connor A, Mitchell S, Tetroe J, Cranney A, Hebert P, Aaron S: Physicians' intentions and use of three patient decision aids. BMC Med Inform and Decis Making. 2007, 7: 1-10.1186/1472-6947-7-1.CrossRef
9.
go back to reference Stirling C, Leggett S, Lloyd B, Scott J, Blizzard L, Quinn S, Robinson A: Decision aids for respite service choices by carers of people with dementia: development and pilot RCT. BMC Med Inform and Decis Making. 2012, 12 (1): 21-10.1186/1472-6947-12-21.CrossRef Stirling C, Leggett S, Lloyd B, Scott J, Blizzard L, Quinn S, Robinson A: Decision aids for respite service choices by carers of people with dementia: development and pilot RCT. BMC Med Inform and Decis Making. 2012, 12 (1): 21-10.1186/1472-6947-12-21.CrossRef
10.
go back to reference Droes R, Meiland FJM, Schmitz MJ, van Tilburg W: Effect of the meeting centres support program on informal carers of people with dementia: results from a multi-centre study. Aging Ment Health. 2006, 10 (2): 112-124. 10.1080/13607860500310682.CrossRefPubMed Droes R, Meiland FJM, Schmitz MJ, van Tilburg W: Effect of the meeting centres support program on informal carers of people with dementia: results from a multi-centre study. Aging Ment Health. 2006, 10 (2): 112-124. 10.1080/13607860500310682.CrossRefPubMed
11.
go back to reference Gaugler JE, Kane RL, Kane RA, Newcomer R: Unmet care needs and key outcomes in Dementia. J Am Geriatr Soc. 2005, 53 (12): 2098-2105. 10.1111/j.1532-5415.2005.00495.x.CrossRefPubMed Gaugler JE, Kane RL, Kane RA, Newcomer R: Unmet care needs and key outcomes in Dementia. J Am Geriatr Soc. 2005, 53 (12): 2098-2105. 10.1111/j.1532-5415.2005.00495.x.CrossRefPubMed
12.
go back to reference Brodaty H, Thomson C, Thompson C, Fine M: Why caregivers of people with dementia and memory loss don't use services. Int J Geriatr Psych. 2005, 20: 537-546. 10.1002/gps.1322.CrossRef Brodaty H, Thomson C, Thompson C, Fine M: Why caregivers of people with dementia and memory loss don't use services. Int J Geriatr Psych. 2005, 20: 537-546. 10.1002/gps.1322.CrossRef
13.
go back to reference Cuijpers P: Depressive disorders in care givers of dementia: a systematic review. Aging Ment Health. 2005, 9: 325-330. 10.1080/13607860500090078.CrossRefPubMed Cuijpers P: Depressive disorders in care givers of dementia: a systematic review. Aging Ment Health. 2005, 9: 325-330. 10.1080/13607860500090078.CrossRefPubMed
14.
go back to reference Australian Institute of Health and Welfare: Dementia in Australia: National data analysis and development. 2007, Canberra: AIHW Australian Institute of Health and Welfare: Dementia in Australia: National data analysis and development. 2007, Canberra: AIHW
15.
go back to reference Sorenson S, Duberstein P, Gill D, Pinquart M: Dementia care: mental health effects, intervention strategies, and clinical implications. Lancet Neurol. 2006, 5: 961-973. 10.1016/S1474-4422(06)70599-3.CrossRef Sorenson S, Duberstein P, Gill D, Pinquart M: Dementia care: mental health effects, intervention strategies, and clinical implications. Lancet Neurol. 2006, 5: 961-973. 10.1016/S1474-4422(06)70599-3.CrossRef
16.
go back to reference Torti FM, Gwyther LP, Reed SD, Friedman JY, Schulman KA: A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord. 2004, 18: 99-109. 10.1097/01.wad.0000126902.37908.b2.CrossRefPubMed Torti FM, Gwyther LP, Reed SD, Friedman JY, Schulman KA: A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord. 2004, 18: 99-109. 10.1097/01.wad.0000126902.37908.b2.CrossRefPubMed
17.
go back to reference Chang E, Easterbrook S, Hancock K, Johnson A, Davidson P: Evaluation of an information booklet for caregivers of people with dementia: an Australian perspective. Nurs Health Sci. 2010, 12 (1): 45-51. 10.1111/j.1442-2018.2009.00486.x.CrossRefPubMed Chang E, Easterbrook S, Hancock K, Johnson A, Davidson P: Evaluation of an information booklet for caregivers of people with dementia: an Australian perspective. Nurs Health Sci. 2010, 12 (1): 45-51. 10.1111/j.1442-2018.2009.00486.x.CrossRefPubMed
18.
go back to reference Stirling C, Lloyd B, Vickers J, Croft T, Turner P, Abbey J, Robinson A: The GOLD Book for carers: guiding options for life with dementia. 2009, Hobart: Wicking Dementia Research and Education Centre Stirling C, Lloyd B, Vickers J, Croft T, Turner P, Abbey J, Robinson A: The GOLD Book for carers: guiding options for life with dementia. 2009, Hobart: Wicking Dementia Research and Education Centre
19.
go back to reference O'Connor A: Validation of a decisional conflict scale. Med Decis Making. 1995, 15 (1): 25-30. 10.1177/0272989X9501500105.CrossRefPubMed O'Connor A: Validation of a decisional conflict scale. Med Decis Making. 1995, 15 (1): 25-30. 10.1177/0272989X9501500105.CrossRefPubMed
20.
go back to reference Braithwaite V: Contextual or general stress outcomes: making choices through caregiving appraisals. Gerontologist. 2000, 40: 706-717. 10.1093/geront/40.6.706.CrossRefPubMed Braithwaite V: Contextual or general stress outcomes: making choices through caregiving appraisals. Gerontologist. 2000, 40: 706-717. 10.1093/geront/40.6.706.CrossRefPubMed
21.
go back to reference Etters L, Goodall D, Harrison BE: Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008, 20: 423-428. 10.1111/j.1745-7599.2008.00342.x.CrossRefPubMed Etters L, Goodall D, Harrison BE: Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008, 20: 423-428. 10.1111/j.1745-7599.2008.00342.x.CrossRefPubMed
22.
go back to reference Greenberger H, Litwin H: Can burdened caregivers be effective facilitators of elder care-recipient health care?. J Adv Nurs. 2003, 41: 332-341. 10.1046/j.1365-2648.2003.02531.x.CrossRefPubMed Greenberger H, Litwin H: Can burdened caregivers be effective facilitators of elder care-recipient health care?. J Adv Nurs. 2003, 41: 332-341. 10.1046/j.1365-2648.2003.02531.x.CrossRefPubMed
23.
go back to reference Leppänen V: Power in telephone-advice nursing. Nursing Inquiry. 2010, 17: 15-26. 10.1111/j.1440-1800.2009.00480.x.CrossRefPubMed Leppänen V: Power in telephone-advice nursing. Nursing Inquiry. 2010, 17: 15-26. 10.1111/j.1440-1800.2009.00480.x.CrossRefPubMed
24.
go back to reference Wackerbarth S: Modeling a dynamic decision process: supporting the decisions of caregivers of family members with Dementia. Qual Health Res. 1999, 9 (3): 294-314. 10.1177/104973299129121875.CrossRef Wackerbarth S: Modeling a dynamic decision process: supporting the decisions of caregivers of family members with Dementia. Qual Health Res. 1999, 9 (3): 294-314. 10.1177/104973299129121875.CrossRef
25.
go back to reference Graham C, Ballard C, Sham P: Carers' knowledge of dementia, their coping strategies and morbidity. Int J Geriatr Psych. 1997, 12: 931-936. 10.1002/(SICI)1099-1166(199709)12:9<931::AID-GPS666>3.0.CO;2-8.CrossRef Graham C, Ballard C, Sham P: Carers' knowledge of dementia, their coping strategies and morbidity. Int J Geriatr Psych. 1997, 12: 931-936. 10.1002/(SICI)1099-1166(199709)12:9<931::AID-GPS666>3.0.CO;2-8.CrossRef
26.
go back to reference Proctor R, Martin C, Hewison J: When a little knowledge is a dangerous thing....: a study of carers' knowledge about dementia, preferred coping style and psychological distress. Int J Geriatr Psych. 2002, 17: 1133-1139. 10.1002/gps.762.CrossRef Proctor R, Martin C, Hewison J: When a little knowledge is a dangerous thing....: a study of carers' knowledge about dementia, preferred coping style and psychological distress. Int J Geriatr Psych. 2002, 17: 1133-1139. 10.1002/gps.762.CrossRef
27.
go back to reference Delany C, Molloy E: Clinical education in the health professions. 2009, Chatswood: Elsevier Delany C, Molloy E: Clinical education in the health professions. 2009, Chatswood: Elsevier
28.
go back to reference Manthorpe J, Iliffe S, Eden A: Testing twigg and atkin's typology of caring: a study of primary care professionals' perceptions of dementia care using a modified focus group method. Health Soc Care Community. 2003, 11: 477-485. 10.1046/j.1365-2524.2003.00453.x.CrossRefPubMed Manthorpe J, Iliffe S, Eden A: Testing twigg and atkin's typology of caring: a study of primary care professionals' perceptions of dementia care using a modified focus group method. Health Soc Care Community. 2003, 11: 477-485. 10.1046/j.1365-2524.2003.00453.x.CrossRefPubMed
29.
go back to reference Crocket K: Counselling supervision and the production of professional selves. Couns Psychotherapy Res. 2007, 7 (1): 19-25. 10.1080/14733140601140402.CrossRef Crocket K: Counselling supervision and the production of professional selves. Couns Psychotherapy Res. 2007, 7 (1): 19-25. 10.1080/14733140601140402.CrossRef
30.
go back to reference Burnard P: Effective communication for health professionals. 1997, Cheltenham UK: Nelson Thornes Burnard P: Effective communication for health professionals. 1997, Cheltenham UK: Nelson Thornes
31.
go back to reference Clarke CL: Family care-giving for people with dementia: some implications for policy and professional practice. J Adv Nurs. 1999, 29: 712-720. 10.1046/j.1365-2648.1999.00940.x.CrossRefPubMed Clarke CL: Family care-giving for people with dementia: some implications for policy and professional practice. J Adv Nurs. 1999, 29: 712-720. 10.1046/j.1365-2648.1999.00940.x.CrossRefPubMed
32.
go back to reference Lloyd B, Stirling C: Ambiguous gain: Uncertain benefits of service use for dementia carers. Sociol Health Ill. 2011, Mar 4. doi: 10.1111/j.1467-9566.2010.01332.x. Lloyd B, Stirling C: Ambiguous gain: Uncertain benefits of service use for dementia carers. Sociol Health Ill. 2011, Mar 4. doi: 10.1111/j.1467-9566.2010.01332.x.
33.
go back to reference Walker E, Dewar BJ: How do we facilitate carers' involvement in decision making?. J Adv Nurs. 2001, 34: 329-337. 10.1046/j.1365-2648.2001.01762.x.CrossRefPubMed Walker E, Dewar BJ: How do we facilitate carers' involvement in decision making?. J Adv Nurs. 2001, 34: 329-337. 10.1046/j.1365-2648.2001.01762.x.CrossRefPubMed
34.
go back to reference Harre R: Positioning Theory. The Sage Dictionary of Social Research Methods. Edited by: Jupp V. 2006, London: Sage Harre R: Positioning Theory. The Sage Dictionary of Social Research Methods. Edited by: Jupp V. 2006, London: Sage
36.
go back to reference Clarke A: Situational analyses: grounded theory after the postmodern turn. Symb Interact. 2003, 26: 553-576. 10.1525/si.2003.26.4.553.CrossRef Clarke A: Situational analyses: grounded theory after the postmodern turn. Symb Interact. 2003, 26: 553-576. 10.1525/si.2003.26.4.553.CrossRef
37.
go back to reference Politi MC, Legare F: Physicians' reactions to uncertainty in the context of shared decision making. Patient Educ Couns. 2010, 80: 155-157. 10.1016/j.pec.2009.10.030.CrossRefPubMed Politi MC, Legare F: Physicians' reactions to uncertainty in the context of shared decision making. Patient Educ Couns. 2010, 80: 155-157. 10.1016/j.pec.2009.10.030.CrossRefPubMed
39.
go back to reference Blank T, Graves K, Sepucha K, Llewellyn-Thomas H: Understanding treatment decision-making: contexts, commonlaities, complexities, and challenges. Ann Behav Med. 2006, 32: 211-217. 10.1207/s15324796abm3203_6.CrossRefPubMed Blank T, Graves K, Sepucha K, Llewellyn-Thomas H: Understanding treatment decision-making: contexts, commonlaities, complexities, and challenges. Ann Behav Med. 2006, 32: 211-217. 10.1207/s15324796abm3203_6.CrossRefPubMed
Metadata
Title
A qualitative study of professional and client perspectives on information flows and decision aid use
Authors
Christine Stirling
Barbara Lloyd
Jenn Scott
Jenny Abbey
Toby Croft
Andrew Robinson
Publication date
01-12-2012
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2012
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/1472-6947-12-26

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