Skip to main content
Bohn Stafleu van Loghum
ZOEKEN
MENU 1 2 3 4
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Quality of Life Research 5/2015

01-05-2015 | Patient Engagement Special Section

Embedding the perceptions of people with dementia into quantitative research design

Auteurs: Ph.D., R.N. Hannah M. O’Rourke, Ph.D., R.N. Wendy Duggleby, Ph.D., R.N. Kimberly D. Fraser

Gepubliceerd in: Quality of Life Research | Uitgave 5/2015

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

Abstract

Purpose

Patient perspectives about quality of life are often found in the results of qualitative research and could be applied to steer the direction of future research. The purpose of this paper was to describe how findings from a body of qualitative research on patient perspectives about quality of life were linked to a clinical administrative dataset and then used to design a subsequent quantitative study.

Methods

Themes from two systematic reviews of qualitative evidence (i.e., metasyntheses) identified what affects quality of life according to people with dementia. Selected themes and their sub-concepts were then mapped to an administrative dataset (the Resident Assessment Instrument 2.0) to determine the study focus, formulate nine hypotheses, and select a patient-reported outcome. A literature review followed to confirm existence of a knowledge gap, identify adjustment variables, and support design decisions.

Results

A quantitative study to test the association between conflict and sadness for people with dementia in long-term care was derived from metasynthesis themes. Challenges included (1) mapping broad themes to the administrative dataset; (2) decisions associated with inclusion of variables not identified by people with dementia from the qualitative research; and (3) selecting a patient-reported outcome, when the dataset lacked a valid subjective quality-of-life measure.

Conclusions

Themes derived from a body of qualitative research capturing a target populations’ perspective can be linked to administrative data and used to design a quantitative study. Using this approach, the quantitative findings will be meaningful with respect to the quality of life of the target population.
vorige artikel Gaps between patients’ reported current and preferred abilities versus clinicians’ emphases during an episode of care: Any agreement?
volgende artikel How recent health-related life events affected my perspective on quality-of-life research
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
2.
Sloane, P. D., Zimmerman, S., Williams, C. S., Reed, P. S., Gill, K. S., & Preisser, J. S. (2005). Evaluating the quality of life of long-term care residents with dementia. Gerontologist, 45(1), 37–49. CrossRefPubMed
3.
Rapley, M. (2003). Quality of life research: A critical introduction. Thousand Oaks, CA: Sage.
4.
Jennings, B. (2000). A life greater than the sum of its sensations: Ethics, dementia, and the quality of life. In S. M. Albert & R. G. Logsdon (Eds.), Assessing quality of life in Alzheimer’s disease (pp. 165–178). New York, NY: Springer.
5.
Kwasky, A. N., Harrison, B. E., & Whall, A. L. (2010). Quality of life and dementia: An integrated review of the literature. Alzheimer’s Care Today, 11(3), 186–195.
6.
Ettema, T. P., Droes, R. M., de Lange, J., Mellenbergh, G. J., & Ribbe, M. W. (2005). A review of quality of life instruments used in dementia. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 14(3), 675–686. CrossRef
7.
Lawton, M. P. (1994). Quality of life in Alzheimer disease. Alzheimer Disease and Associated Disorders, 8(Suppl 3), 138–150. CrossRefPubMed
8.
Lawton, M. P. (1997). Assessing quality of life in Alzheimer disease research. Alzheimer Disease and Associated Disorders, 11(Suppl 6), 91–99. PubMed
9.
Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2000). Quality of life in Alzheimer’s disease: Patient and caregiver reports. In S. M. Albert & R. G. Logsdon (Eds.), Assessing quality of life in Alzheimer’s disease (pp. 17–30). New York, NY: Springer.
10.
Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510–519. CrossRefPubMed
11.
Trigg, R., Skevington, S. M., & Jones, R. W. (2007). How can we best assess the quality of life of people with dementia? The Bath Assessment of Subjective Quality of Life in Dementia (BASQID). Gerontologist, 47(6), 789–797. CrossRefPubMed
12.
Kitwood, T., & Bredin, K. (1992). Towards a theory of dementia care: Personhood and well-being. Ageing and Society, 12, 269–287. CrossRefPubMed
13.
Kitwood, T. (1995). Positive long-term changes in dementia: Some preliminary observations. Journal of Mental Health, 4(2), 133–144. CrossRef
14.
Brod, M., Stewart, A. L., Sands, L., & Walton, P. (1999). Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL). Gerontologist, 39(1), 25–35. CrossRefPubMed
15.
Brod, M., Stewart, A. L., & Sands, L. (2000). Conceptualization of quality of life in dementia. In S. M. Albert & R. G. Logsdon (Eds.), Assessing quality of life in Alzheimer’s Disease (pp. 3–16). New York, NY: Springer.
16.
Ready, R. E., Ott, B. R., Grace, J., & Fernandez, I. (2002). The Cornell–Brown scale for quality of life in dementia. Alzheimer Disease and Associated Disorders, 16(2), 109–115. CrossRefPubMed
17.
Coen, R., O’Mahony, D., O’Boyle, C., & Joyce, C. R. (1993). Measuring the quality of life of dementia patients using the schedule for the evaluation of individual quality of life. The Irish Journal of Psychology, 14(1), 154–163. CrossRef
18.
19.
20.
Griffiths, T., Giarchi, G., Carr, A., Jones, P., & Horsham, S. (2007). Life mapping: A “Therapeutic Document” approach to needs assessment. Quality of Life Research, 16(3), 467–481. CrossRefPubMed
21.
Lipscomb, J., Snyder, C. F., & Gotay, C. C. (2007). Cancer outcomes measurement: Through the lens of the medical outcomes trust framework. Quality of Life Research, 16(1), 143–164. CrossRefPubMed
22.
Cahill, S., & Diaz-Ponce, A. (2011). “I hate having nobody here. I”d like to know where they all are’: Can qualitative research detect differences in quality of life among nursing home residents with different levels of cognitive impairment? Aging & Mental Health, 15(5), 562–572. doi: 10.​1080/​13607863.​2010.​551342. CrossRef
23.
Jonas-Simpson, C., & Mitchell, G. J. (2005). Giving voice to expressions of quality of life for persons living with dementia through story, music, and art. Alzheimer’s Care Quarterly, 6(1), 52–61.
24.
Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1(1), 13–22. CrossRef
25.
Kolanowski, A. (2011). An invitation to a conversation on quality of life and dementia. Journal of Gerontological Nursing, 37(2), 4–5. CrossRefPubMed
26.
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (Vol. 4). Washington, DC: American Psychiatric Association.
27.
28.
Byrne-Davis, L. M., Bennett, P. D., & Wilcock, G. K. (2006). How are quality of life ratings made? Toward a model of quality of life in people with dementia. Quality of Life Research, 15(5), 855–865. CrossRefPubMed
29.
Droes, R., Boelens-Van Der Knoop, E. C. C., Bos, J., Meihuizen, L., Ettema, T. P., Gerritsen, D. L., & Scholzel-Dorenbos, C. J. M. (2006). Quality of life in dementia in perspective: An explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia, 5(4), 533–558. CrossRef
30.
Fukushima, T., Nagahata, K., Ishibashi, N., Takahashi, Y., & Moriyama, M. (2005). Quality of life from the viewpoint of patients with dementia in Japan: Nurturing through an acceptance of dementia by patients, their families and care professionals. Health and Social Care in the Community, 13(1), 30–37. CrossRefPubMed
31.
Moyle, W., Venturto, L., Griffiths, S., Grimbeek, P., McAllister, M., Oxlade, D., & Murfield, J. (2011). Factors influencing quality of life for people with dementia: A qualitative perspective. Aging & Mental Health, 15(8), 970–977. CrossRef
32.
Orpwood, R., Chadd, J., Howcroft, D., Sixsmith, A., Torrington, J., Gibson, G., & Chalfont, G. (2010). Designing technology to improve quality of life for people with dementia: User-led approaches. Universal Access in the Information Society, 9(3), 249–259. doi: 10.​1007/​s10209-009-0172-1. CrossRef
33.
Sorrell, J. M. (2006). Listening in thin places: Ethics in the care of persons with Alzheimer’s disease. Advances in Nursing Science, 29(2), 152–160. CrossRefPubMed
34.
Parse, R. R. (1996). Quality of life for persons living with Alzheimer’s disease: The human becoming perspective. Nursing Science Quarterly, 9(3), 126–133. CrossRefPubMed
35.
Silberfeld, M., Rueda, S., Krahn, M., & Naglie, G. (2002). Content validity for dementia of three generic preference based health related quality of life instruments. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 11(1), 71–79. CrossRef
36.
Thorgrimsen, L., Selwood, A., Spector, A., Royan, L., de Madariaga Lopez, M., Woods, R. T., & Orrell, M. (2003). Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer’s Disease (QoL-AD) scale. Alzheimer Disease and Associated Disorders, 17(4), 201–208. CrossRefPubMed
37.
Creswell, J. W. (2007). Qualitative inquiry and research design: Choosing among five approaches. Thousand Oaks, CA: Sage.
38.
Thorne, S. E., & Paterson, B. L. (2000). Two decades of insider research: What we know and don’t know about chronic illness experience. Annual Review of Nursing Research, 18, 3–25. PubMed
39.
Plano Clark, V. L., & Creswell, J. W. (2008). The mixed methods reader. Thousand Oaks, CA: Sage.
40.
Ettema, T. P., Droes, R. M., de Lange, J., Mellenbergh, G. J., & Ribbe, M. W. (2007). QUALIDEM: Development and evaluation of a dementia specific quality of life instrument–validation. International Journal of Geriatric Psychiatry, 22(5), 424–430. CrossRefPubMed
41.
Smith, S. C., Lamping, D. L., Banerjee, S., Harwood, R., Foley, B., Smith, P., & Knapp, M. (2005). Measurement of health-related quality of life for people with dementia: Development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology Assessment, 9(10), 1–93. CrossRef
42.
Sandelowski, M. J., & Barroso, J. (2007). Handbook for synthesizing qualitative research. New York, NY: Springer.
43.
44.
45.
O’Rourke, H. M., Duggleby W., Fraser, K. D., & Jerke, L. (2015). Factors that affect quality of life from the perspective of people with dementia: A metasynthesis. Journal of the American Geriatrics Society, 63, 24–38. doi: 10.​1111/​jgs.​13178
46.
Morris, J. N., Hawes, C., Mor, V., Phillips, C., Fries, B. E., Nonemaker, S., & Murphy, K. (2010). Resident Assessment Instrument (RAI) MDS 2.0 user’s manual, Canadian version (Vol. 2). Washington, DC: interRAI.
47.
Hawes, C., Phillips, C. D., Mor, V., Fries, B. E., & Morris, J. N. (1992). MDS data should be used for research. The Gerontologist, 32(4), 563–564. CrossRefPubMed
48.
Ericsson, I., Hellström, I., & Kjellström, S. (2011). Sliding interactions: An ethnography about how persons with dementia interact in housing with care for the elderly. Dementia, 10(4), 523–538. doi: 10.​1177/​1471301211409376​. CrossRef
49.
50.
Casten, R., Lawton, M. P., Parmelee, P. A., & Kleban, M. H. (1998). Psychometric characteristics of the minimum data set I: Confirmatory factor analysis. Journal of the American Geriatrics Society, 46(6), 726–735. PubMed
51.
Firestone, W. A. (1993). Alternative arguments for generalizing from data as applied to qualitative research. Educational Researcher, 22(4), 16–23. CrossRef
52.
53.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage.
54.
55.
James, W. (1907). Pragmatism: A new name for some old ways of thinking. New York: Longman Green and Co. CrossRef
56.
Morris, J. N., Fries, B. E., Mehr, D. R., Hawes, C., Phillips, C., Mor, V., & Lipsitz, L. A. (1994). MDS cognitive performance scale. Journal of Gerontology, 49(4), M174–M182. CrossRefPubMed
57.
Morris, J. N., Fries, B. E., & Morris, S. A. (1999). Scaling ADLs within the MDS. Journals of Gerontology Series A-Biological Sciences & Medical Sciences, 54(11), M546–M553. CrossRef
58.
McGilton, K. S., Sidani, S., Boscart, V. M., Guruge, S., & Brown, M. (2012). The relationship between care providers’ relational behaviors and residents mood and behavior in long-term care settings. Aging & Mental Health, 16(4), 507–515. doi: 10.​1080/​13607863.​2011.​628980. CrossRef
59.
Finnema, E., Droes, R. M., Ettema, T., Ooms, M., Ader, H., Ribbe, M., & van Tilburg, W. (2005). The effect of integrated emotion-oriented care versus usual care on elderly persons with dementia in the nursing home and on nursing assistants: A randomized clinical trial. International Journal of Geriatric Psychiatry, 20(4), 330–343. CrossRefPubMed
60.
de Rooij, A. H., Luijkx, K. G., Schaafsma, J., Declercq, A. G., Emmerink, P. M., & Schols, J. M. (2012). Quality of life of residents with dementia in traditional versus small-scale long-term care settings: A quasi-experimental study. International Journal of Nursing Studies, 49(8), 931–940. doi: 10.​1016/​j.​ijnurstu.​2012.​02.​007. CrossRefPubMed
61.
Bédard, A., Landreville, P., Voyer, P., Verreault, R., & Vézina, J. (2011). Reducing verbal agitation in people with dementia: Evaluation of an intervention based on the satisfaction of basic needs. Aging & Mental Health, 15(7), 855–865. doi: 10.​1080/​13607863.​2011.​569480
62.
Beck, C. K., Vogelpohl, T. S., Rasin, J. H., Uriri, J. T., O’Sullivan, P., Walls, R., & Baldwin, B. (2002). Effects of behavioral interventions on disruptive behavior and affect in demented nursing home residents. Nursing Research, 51(4), 219–228. CrossRefPubMed
63.
McCallion, P., Toseland, R. W., & Freeman, K. (1999). An evaluation of a family visit education program. Journal of the American Geriatrics Society, 47(2), 203–214. PubMed
64.
Torvik, K., Kaasa, S., Kirkevold, O., & Rustoen, T. (2010). Pain and quality of life among residents of Norwegian nursing homes. Pain Management Nursing, 11(1), 35–44. CrossRefPubMed
Metagegevens
Titel
Embedding the perceptions of people with dementia into quantitative research design
Auteurs
Ph.D., R.N. Hannah M. O’Rourke
Ph.D., R.N. Wendy Duggleby
Ph.D., R.N. Kimberly D. Fraser
Publicatiedatum
01-05-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-0967-x

Andere artikelen Uitgave 5/2015

Quality of Life Research 5/2015 Naar de uitgave

Brief Communication

Cultural adaptation and psychometric assessment of Pain Catastrophizing Scale among young healthy Malay-speaking adults in military settings

Patient Engagement Special Section

Data collection challenges in community settings: insights from two field studies of patients with chronic disease

Review

Evaluation of cross-cultural adaptation and measurement properties of breast cancer-specific quality-of-life questionnaires: a systematic review

OriginalPaper

Health-related quality of life in women referred for bone density assessment: relationships with bone mineral density, fracture and co-morbidity

OriginalPaper

Predicting participation in meaningful activity for older adults with cancer

OriginalPaper

Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations