1. Making sense of bereavement
Using the Cognitive Edge© approach and SenseMaker™ software to audit and analyse the experience of bereaved people and primary care professionals
Anne Coyle
Bereavement Coordinator
Southern Health and Social Care Trust

2. Background and Context
HSC Bereavement Network created in by the Department of Health Social Services and Public Safety in Northern Ireland (DHSSPS)
New post in healthcare created – a Bereavement Coordinator in each Health and Social Care (HSC)Trust
Commissioned to develop standards for bereavement care for HSC services

3. Methods for data collection to inform standard development
NI Audit: Dying, Death and Bereavement
Phase 1: Policies , Procedures and Practices in hospital and hospice settings (2009)
Phase 2: The experiences of bereaved people and those delivering primary care services (2010)

4. Phase 2 - Methodology selection
“ While numbers are useful and can be objective, they are rarely persuasive by themselves as they lack the rich context of anecdotal data. While anecdotes can be persuasive they lack objectivity and can be easily dismissed. What is needed is an approach that combines the merits of both ”
Angelina Seah, Cognitive Edge© 2010

5. Why use a narrative based methodology in the audit of experience in bereavement?
More than numbers context is needed to understand why people behave and think the way they do
Narrative based research can reveal to management and employees unexpected insights into practices, personal beliefs and organisational culture
To understand the complex interactions and decisions made by staff in the circumstances of death and their impact on bereaved people, much about how well standards are met can be gained from the story of care scenarios.

6. Cognitive Edge© v Traditional methods

7. Understanding SenseMaker™

8. Audit design and data collection
Audit sample identified and criteria selected
Prompt questions for storytelling developed
Filter questions selected:
Signifiers (indexing of story by participant)
Questions tested during pilot and modified
Audit publicised and participation invited via online completion. Paper version available
‘anecdote circle’ collection facilitated
Data collected between November 2009 & March 2010

9. Examples of audit tool screens

10. Example of a Triad

11. Data analysis 260 Responses 2 databases returned by Cognitive Edge©
Personal n=167 narratives
Professional n=93 narratives
Narratives filtered by response to filter and signifier questions and mapped against audit criteria using SenseMaker™ software
Emerging patterns/messages identified

12. Data Analysis – software viewing options
Glance birds-eye view of data and indexes
Browse to look at data and search for text
Compare to make simple comparisons between sets of items
Range look at items along linear scales
Distribute see histograms of items linked to filters
Cluster watch items cluster around filters or combinations of filters
Graph analyze relationships among filters and questions
Landscape view data as a 3D surface and consider large scale patterns

13. Example of filter question response
Question: Describe your overall feeling about the story

14. Example of triad response - Cluster

15. Professional narratives
Personal narratives
Professional narratives
Triad about decision making around the time of death
47 respondents indicated it was a partnership
68% of these were indexed strongly positive or positive
13% were negative or strongly negative
Triad about decision making around the time of death
45 respondents indicated it was a partnership
47% of these were indexed strongly or positive
31% were neutral
0% indexed as negative or strongly negative
Example of findings

16. Title: Cavalier attitude by medical staff
Personal story
With responses to some filter questions
Title: Cavalier attitude by medical staff
Emotional intensity: Strongly negative
Reason for telling: Educate/influence
Key words: Unacceptable, distressing, thoughtless
How did you feel at the time? Frustrated
How do you feel now? Sad
Decision making? taken out of the patients/families hands

17. Personal Story
With responses to some filter questions
Title: Devotion without question Emotional intensity: Strongly positive Reason for telling: Encourage/Compliment Key words: Care, love, attention How did you feel at the time? In control How do you feel now? Not indicated Decision making? Partnership

18. Conclusion
Method allowed the story of experience to be analysed in an objective way
Findings complement the quantitative and qualitative findings of the audit’s first phase
Affirmed the focus of the six standards in the HSC Strategy for Bereavement Care
Stories have since been used to powerful effect within governance, education and practice development fora
Method has generated much interest in HSC

19. Further Information
Cognitive Edge and SenseMaker
NI Audit: Dying, Death & Bereavement
Phases 1&2
HSC Strategy for Bereavement Care (2009) for-bereavement-care-june-2009.pdf
For more information on this audit etc., contact