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

Background and Context HSC Bereavement Network created in 2006 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

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)

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

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.

Cognitive Edge© v Traditional methods

Understanding SenseMaker™

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

Examples of audit tool screens

Example of a Triad

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

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

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

Example of triad response - Cluster

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

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

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

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

Further Information Cognitive Edge and SenseMaker http://cognitive-edge.com/ NI Audit: Dying, Death & Bereavement Phases 1&2 www.gain-ni.org/Library/Audit/Index-asp HSC Strategy for Bereavement Care (2009) http://www.dhsspsni.gov.uk/nihsc-strategy- for-bereavement-care-june-2009.pdf For more information on this audit etc., contact Anne.Coyle@southerntrust.hscni.net