Table 1 VOICES MaJam Coding Frame

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