Hostname: page-component-586b7cd67f-gb8f7 Total loading time: 0 Render date: 2024-11-26T15:00:22.520Z Has data issue: false hasContentIssue false
  • English
  • Français

Development and psychometric evaluation of an observational coding system measuring person-centered care in spouses of people with dementia

Published online by Cambridge University Press:  15 July 2014

Stephanie L. Ellis-Gray ,
Gerard A. Riley  and
Jan R. Oyebode
Stephanie L. Ellis-Gray
Affiliation:
Mental Health Services for Older People, Birmingham and Solihull Mental Health NHS Foundation Trust, Birmingham, UK
Gerard A. Riley
Affiliation:
School of Psychology, University of Birmingham, Edgbaston, Birmingham, UK
Jan R. Oyebode*
Affiliation:
Department of Dementia Care, University of Bradford, Bradford, UK
*
Correspondence should be addressed to: Professor Jan R. Oyebode, Department of Dementia Care, University of Bradford, Bradford BD7 1DP, UK. Phone: +44(0)1274236330. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

The notion of person-centered care has been important in investigating relationships between people with dementia and paid carers, and measures are available to assess this. It has been suggested that person-centered care may be a useful construct to apply to understand family-care relationships. However, no measures of person-centered care in this context exist. The study aimed to develop an observational measure of person-centered care for this purpose.

Method:

First, a coding system incorporating a range of behaviors that could be considered person-centered or non-person-centered was constructed. Examples included a code relating to whether the person with dementia was involved in planning a task, and a code relating to how the spouse responded to confusion/distress. Second, 11 couples, where one partner had a dementia, were recruited and videotaped cooperating on an everyday task. The system was applied to the care-giving spouse's behaviors, labeling examples of behavior as person-centered or non-person-centered. The final step involved assessing the inter-rater reliability of the system.

Results:

The system captured nine categories of behavior, which were each divided into person-centered and non-person-centered types. The system had good reliability (Cohen's κ coefficients were: 0.65 for category and whether behaviors needed to be placed in a category; 0.81 for category excluding the decision about whether behaviors needed to be placed in a category; and 0.79 in relation to whether behaviors were person-centered or non-person-centered.)

Conclusions:

Although the small sample size limits the implications of the results, the system is a promising quantitative measure of spousal person-centered care.

Keywords

dementiaspousesobservationcoding systemperson-centered care
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Issue 11 , November 2014 , pp. 1885 - 1895
Copyright
Copyright © International Psychogeriatric Association 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Brooker, D. J. (2007). Person-Centred Dementia Care. Making Services Better. London: Jessica Kingsley.Google Scholar
Brooker, D., La Fontaine, J., De Vries, K., Porter, T. and Surr, C. (2011). How Can I Tell You What's Going on Here? The Development of PIECE-Dem: An Observational Framework Focussing on the Perspective of Residents with Advanced Dementia Living in Care Homes. Report to Funders submitted to Department of Health Policy Research Programme, Association of Dementia Studies, University of Worcester, Worcester, UK.Google Scholar
Brooker, D. J. and Surr, C. (2006). Dementia Care Mapping (DCM): initial validation of DCM 8 in UK field trials. International Journal of Geriatric Psychiatry, 21, 1018–1025.CrossRefGoogle ScholarPubMed
Clare, L. and Shakespeare, P. (2004). Negotiating the impact of forgetting: dimensions of resistance in task-oriented conversations between people with early-stage dementia and their partners. Dementia, 3, 211–232. doi:10.1177/1471301204042338.Google Scholar
Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 37–46. doi:10.1177/001316446002000104.CrossRefGoogle Scholar
Department of Health. (2009). Living Well with Dementia: A National Dementia Strategy. London: Department of Health.Google Scholar
De Silva, D. (2014). Helping Measure Person-Centred Care. London: The Health Foundation.Google Scholar
Downs, M. (2013). Putting people – and compassion – first: the UK's approach to person-centered care for individuals with dementia. Generations, 37, 53–59.Google Scholar
Gallagher-Thompson, D., Dal Canto, P., Jacob, T. and Thompson, L. (2001). A comparison of marital interactions patterns between couples in which the husband does or does not have Alzheimer's disease. Journal of Gerontology, 56B, S140–S150. doi:10.1093/geronb/56.3.S140.Google Scholar
Gottman, J. M., McCoy, K., Coan, J. and Collier, H. (1996). The specific affect coding system (SPAFF). In Gottman, J. M. (ed.), What Predicts Divorce? The Measures (pp. 131–143). Mahwah, New Jersey: Erlbaum.Google Scholar
Hahlweg, K. (2004). Kategoriensystem für Parnerschaftliche Interaktion (KPI): Interactional Coding System (ICS). In Kerig, P. K. and Baucom, D. H. (eds.), Couple Observational Coding Systems (pp. 127–142). New Jersey: Lawrence Erlbaum.Google Scholar
Hahlweg, K., Reisner, L., Kohli, G., Vollmer, M., Schindler, L. and Revenstorf, D. (1984). Development and validity of a new system to analyse interpersonal communication. KPI: Kategoriensystem für Parnerschaftliche Interaktion. In Hahlweg, K. and Jacobson, N. S. (eds.), Marital Interaction: Analysis and modification (pp. 182–198). New York, NY: Guilford Press.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. (2005). “We do things together”: a case study of “couplehood” in dementia. Dementia, 4, 7–22. doi:10.1177/1471301205049188.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. (2007). Sustaining “couplehood”: spouses’ strategies for living positively with dementia. Dementia, 6, 383–409. doi:10.1177/1471301207081571.CrossRefGoogle Scholar
Heyman, R. E. (2004). Rapid Marital Interaction Coding System (RMICS). In Kerig, P. K. and Baucom, D. H. (eds.), Couple Observational Coding Systems (pp. 67–94). New Jersey: Lawrence Erlbaum.Google Scholar
Heyman, R. E. et al. (2001). How much observational data is enough? An empirical test using marital interaction coding. Behavior Therapy, 32, 107–122. doi:10.1016/S0005-7894(01)80047-2.CrossRefGoogle ScholarPubMed
Hops, H., Wills, T. A., Weiss, R. L. and Patterson, G. R. (1972). Marital Interaction Coding System (MICS). Eugene: University of Oregon, Oregon Research Institute.Google Scholar
Kitwood, T. (1990). The dialectics of dementia: with particular reference to Alzheimer's disease. Ageing and Society, 10, 177–196. doi:10.1017/S0144686X00008060.CrossRefGoogle Scholar
Landis, J. R. and Koch, , , G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–174. doi:10.2307/2529310.CrossRefGoogle ScholarPubMed
Perry, J. and O’Connor, D. (2002). Preserving personhood: (re)membering the spouse with dementia. Family Relations, 51, 55–62. doi:10.1111/j.1741-3729.2002.00055.x.CrossRefGoogle Scholar
Phinney, A. (2006). Family strategies for supporting involvement in meaningful activity by persons with dementia. Journal of Family Nursing, 12, 80–101. doi:10.1177/1074840705285382.CrossRefGoogle ScholarPubMed
Sanders, S. and Power, J. (2009). Roles, responsibilities and relationships among older husbands caring for wives with progressive dementia and other chronic conditions. Health and Social Work, 34, 41–51. doi:10.1093/hsw/34.1.41.CrossRefGoogle ScholarPubMed
Schulz, R. and Martire, L. M. (2004). Family caregiving of persons with dementia: prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12, 240–249. doi:10.1176/appi.ajgp.12.3.240.CrossRefGoogle ScholarPubMed
Shapiro, A. F. and Gottman, J. M. (2004). The Specific Affect Coding System (SPAFF). In Kerig, P. K. and Baucom, D. H. (eds.), Couple Observational Coding Systems (pp. 191–208). New Jersey: Lawrence Erlbaum.Google Scholar
Small, J. A., Gutman, G., Makela, S. and Hillhouse, B. (2003). Effectiveness of communication strategies used by caregivers of persons with Alzheimer's disease during activities of daily living. Journal of Speech, Language, and Hearing Research, 46, 353–367. doi:10.1044/1092-4388 (2003/028).Google Scholar
Vikström, S., Borell, L., Stigsdotter-Neely, A. and Josephsson, S. (2005). Caregivers’ self-initiated support toward their partners with dementia when performing an everyday occupation together at home. Nursing & Allied Health Source, 25, 149–159.Google Scholar
Vikström, S., Josephsson, S., Stigsdotter-Neely, A. and Nygård, L. (2008). Engagement in activities: experiences of persons with dementia and their caregiving spouses. Dementia, 7, 251–270. doi:10.1177/1471301208091164.Google Scholar