Patients
|
Awareness of risk/safety (3 of 5 subthemes) |
Discomfort and illness during or post‐transfusion |
5 |
X |
|
X |
7 |
Health risks from high iron levels |
2 |
X |
X |
|
4 |
Potential infection or reaction risk |
4 |
|
|
X |
5 |
Health benefits (5 of 6 subthemes) |
Boosting blood levels |
6 |
|
X |
X |
8 |
Keep going with daily life |
5 |
X |
X |
|
7 |
Relief of symptoms such as tiredness |
6 |
X |
|
|
7 |
Anticipated benefits |
4 |
|
X |
X |
6 |
Can take time to feel benefit of transfusion |
1 |
|
X |
|
2 |
|
(interviews 1–11)
|
12
|
13
|
14
|
|
Negative emotions (6 of 8 subthemes) |
No concerns or worries with transfusions |
8 |
|
X |
X |
10 |
Attempts to manage worries and fear |
6 |
X |
X |
X |
9 |
Gratitude that transfusions possible |
3 |
X |
|
X |
5 |
Relaxed during transfusion appointments |
4 |
|
|
X |
5 |
Receiving transfusions unpleasant |
3 |
X |
|
|
4 |
Positive emotions of not needing transfusion |
1 |
X |
|
|
2 |
Alternatives (1 of 4 subthemes) |
Alternatives considered or already in use |
5 |
X |
|
X |
7 |
Necessity (3 of 5 subthemes) |
Transfusions required as a current and long‐term supportive treatment |
7 |
X |
X |
X |
10 |
Need established by HCPs and clinical indicators |
7 |
X |
|
|
8 |
Need for transfusion apparent through symptoms |
6 |
X |
X |
|
8 |
|
(interviews 1–11)
|
12
|
13
|
14
|
|
Involvement in decision making (5 of 7 subthemes) |
Willing acceptance of transfusions |
6 |
X |
|
|
7 |
Confronted with limited or no choice |
5 |
|
X |
|
6 |
Transfusion offered with patient involvement in choice |
4 |
X |
X |
X |
7 |
Routine ‘automatic’ treatment |
2 |
|
|
X |
3 |
More frequent transfusions would be resisted |
1 |
X |
|
|
2 |
Burden (4 of 4 subthemes) |
Transfusion part of routine life |
5 |
|
X |
X |
7 |
Transfusions are inconvenient |
4 |
X |
|
|
5 |
Attendance not a great burden |
3 |
|
X |
|
4 |
Life restrictions, travel |
2 |
X |
X |
|
4 |
Social connection (3 of 5 subthemes) |
Patient involvement generally positive |
4 |
X |
|
X |
6 |
|
(interviews 1–11)
|
12
|
13
|
14
|
|
Lack of interaction or activity during transfusions |
4 |
|
|
X |
5 |
Interaction with other patients |
4 |
X |
X |
|
6 |
HCPS |
Awareness of risk/safety (6 of 6 subthemes) |
Risks mitigated by safe transfusion practices |
9 |
X |
X |
X |
12 |
Risks and benefits established with patients |
7 |
X |
|
X |
9 |
Iron overload considered a key risk |
5 |
X |
X |
|
7 |
Infections, antibodies and reactions risks |
6 |
|
|
X |
7 |
Short and long‐term medical and psychological impact |
4 |
X |
X |
|
6 |
Risk of not providing a transfusion |
2 |
X |
X |
X |
5 |
Alternatives (4 of 4 subthemes) |
Alternatives considered or already in use |
8 |
|
X |
X |
10 |
|
(interviews 1–11)
|
12
|
13
|
14
|
|
No alternatives, transfusion the only option |
5 |
|
X |
X |
7 |
Support for greater consideration and use of alternatives |
4 |
|
X |
X |
6 |
Committed to giving regular transfusions once started |
2 |
|
X |
|
3 |
Burden (2 of 2 subthemes) |
Anticipated attendance burden for patients |
9 |
X |
|
X |
11 |
Transfusion has become a part of patient's routine life |
5 |
|
X |
X |
7 |
Health benefits (6 of 6 subthemes) |
Symptom improvement, making patients feel better |
9 |
X |
X |
|
11 |
Supportive care to carry on with normal daily living |
9 |
|
X |
|
10 |
Benefit lasts a limited time only |
7 |
|
X |
|
8 |
Shared HCP agreement of transfusion benefits |
4 |
|
|
X |
5 |
|
(interviews 1–11)
|
12
|
13
|
14
|
|
Patient questioned on benefits to provide / continue transfusions |
4 |
|
X |
|
5 |
Some risk‐benefit for patients questionable |
2 |
|
X |
|
3 |
Necessity (4 of 5 subthemes) |
Transfusions support chemotherapy or used to treat anaemia |
9 |
X |
X |
X |
12 |
Transfusions are vital, aiding survival |
8 |
|
X |
X |
10 |
Transfusions given to protect health |
7 |
|
X |
|
8 |
Necessity established using clinical and patient factors |
7 |
|
|
X |
8 |
Negative emotions (5 of 7 subthemes) |
Practice concerns and frustrations |
9 |
|
|
X |
10 |
Patient anxiety and upset with receiving regular transfusions |
8 |
X |
X |
|
10 |
|
(interviews 1–11)
|
12
|
13
|
14
|
|
Concern about downsides of transfusions for patients |
8 |
X |
X |
|
10 |
Patients’ unexpressed potential negative emotions |
7 |
X |
X |
|
9 |
Upset in witnessing patients’ worsening health or death |
2 |
|
|
X |
3 |
Involvement in decision making (6 of 8 subthemes) |
HCPs advocate and involve patients in decisions |
10 |
X |
X |
X |
13 |
Team decision on transfusion prescription |
12 |
|
|
X |
13 |
Patient autonomy in their own transfusion decisions |
9 |
X |
X |
|
11 |
Individual transfusion regime for each patient |
8 |
|
X |
X |
10 |
Transfusions prescribed appropriately using guidelines |
5 |
X |
X |
X |
8 |
Barriers to discussing transfusion or obtaining consent |
3 |
|
X |
X |
5 |
|
(interviews 1–11)
|
12
|
13
|
14
|
|
Organisational factors (5 of 5 subthemes) |
Solutions needed to improve processes and ease capacity strain |
6 |
|
X |
|
7 |
Solutions needed to enhance communication |
5 |
|
X |
|
6 |
High and costly blood use for hospital |
5 |
X |
|
|
6 |
Constraints to greater discussion of patients’ views |
5 |
|
X |
|
6 |
Complicated management of transfusion slots |
4 |
|
|
X |
5 |
Stability and variability of transfusion perceptions (3 of 3 subthemes) |
Views consistent and similar to colleagues |
6 |
|
|
X |
7 |
Views broadened through haematology exposure |
4 |
X |
X |
X |
7 |
Patients’ transfusion perceptions variable |
1 |
|
|
X |
2 |