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Table 1 VOICES MaJam Coding Frame

From: Voices that matter: end-of-life care in two acute hospitals from the perspective of bereaved relatives

Node No. Parent node Child node Definition/ description of terms
1 Person-centred 1.1 Kindness & Compassion (Positive)
1.2 Dignity & Respect (Positive)
1.3 Kindness & Compassion (Negative)
1.4 Dignity & Respect (Negative)
Staff attitudes (incl. Mention of professionalism)
Caring
Attentiveness
Going extra mile
Being understanding
Empathy
2 Patient preference 2.1 Positive Comments
2.2 Negative Comments
Preferred place of care, of treatment, etc.
Person centred approach to patient preferences
3 Equity of access 3.1 Positive Comments
3.2 Negative Comments
To services (having to come through A/E where others don’t as perceive by respondent) to palliative care team/other specialists or community services, etc. (examples include comments on weekends and out-of-hours services)
4 Safe practice/environment 4.1 Staff skills (positive)
4.2 Staff shortages (positive)
4.3 Safe environment (positive)
4.4 Staff skills (negative)
4.5 Staff shortages (negative)
4.6 Safe environment (negative)
Competency to manage symptoms/deliver care e.g. A/E trolleys, over-crowding, other patients.
Including mentíons of general care.
5 Good Communication 5.1 Patient
5.2 Relative
5.3 MDT
Being informed/being able to express concerns; responsiveness of staff, being asked about concerns/needs/ Communication a two-way process
Verbal & nonverbal & written communication aspects
Incl. mentions of bereavement card/letter
6 Poor Communication 6.1 Patient
6.2 Relative
6.3 MDT
Being informed/being able to express concerns; responsiveness of staff, being asked about concerns/needs/ Communication a two-way process
Verbal & nonverbal & written communication aspects
7 Shared decision making/ participation 7.1 Positive Comments
7.2 Negative Comments
Patient and/or relative and staff
(participation for patient and/or relative)
8 Privacy 8.1 Positive Comments
8.2 Negative Comments
Overheard/exposure
Personal space/public place
9 Symptom management 9.1 Physical (positive)
9.2 Psychological (positive)
9.3 Social (positive)
9.4 Emotional (positive)
9.5 Spiritual (positive)
9.6 Physical (negative)
9.7 Psychological (negative)
9.8 Social (negative)
9.9 Emotional (negative)
9.10 Spiritual (negative)
Psychological = depression
Social
Emotional = upset
Spiritual (may be religious/humanist)
10 Physical environment 10.1 Positive Comment
10.2 Negative Comments
Facilities on wards/hospital (e.g. refreshments)/ parking/mortuary/ family room/single room/cleanliness/visiting times
11 Family support 11.1 Support presence of family (positive)
11.2 After death care (positive)
11.3 Bereavement care (positive)
11.4 Support presence of family (negative)
11.5 After death care (negative)
11.6 Bereavement care (negative)
Physical, psychological, social, emotional, spiritual
Sensitive/appropriate
Incl. mention of bereavement card/letter
12 Coordination of care 12.1 Across teams (positive)
12.2 Within MDT (positive)
12.3 Across teams (negative)
12.4 Within MDT (negative)
Chaos
Calling the shots
13 Patient care needs 13.1 Prior to death (positive)
13.2 After death (positive)
13.3 Prior to death (negative)
13.4 After death (negative)
Basic physical care needs (comfort, positioning, intake)
e.g. Laying out of the deceased
14 Post Mortem   Issues around process of investigation of cause of death
15 Nutrition   Food intake not being monitored
Specialist diet requirements not being met e.g. Parkinson’s
16 Additional help and support (Q29) 16.1 Person-centered
16.2 Patient preference
16.3 Equity of access
16.4 Safe practice/environment
16.5 Good communication
16.6 Poor communication
16.7 Shared decision making/participation
16.8 Privacy
16.9 Symptom Management
16.10 Physical environment
16.11 Family Support
16.12 Coordination of care
16.13 Patient care needs
16.14 Post Mortem
16.15 Nutrition
16.16 Access to palliative care
16.17 Methodology
16.18 General Comments
Q29 very specifically worded about additional help and support that relative would have liked – need to capture these responses separately so code here.
17 Access to palliative care   
18 Methodology 18.1 Helpful or beneficial
18.2 Thankful for the opportunity
 
19 General Comments