Table 4 Taxonomy and frequency counts of pediatric SDM barriers and facilitators from multiple perspectives

B

F

B

F

B

F

B

F

B

F

 Option features (11)

[67, 70, 84, 99, 109, 116, 117, 119, 120, 124, 125]

4

7

3

2

1

14

3

 High versus low stake decisions (9)

[43, 46, 49, 50, 52, 84, 87, 99, 101]

2

3

1

2

1

4

4

9

 Availability of medical and research information (8)

[67, 70, 84, 99, 107, 117, 119, 120, 124, 125]

4

1

2

5

2

 Atypical decision or uncomfortable topics (2)

[64, 119]

1

1

1

1

1

7

3

12

2

5

9

1

24

15

B

F

B

F

B

F

B

F

B

F

 Level of quality/tailored information that is given to the family (30)

[54, 59, 60, 64, 68,69,70, 72, 73, 75, 80, 82,83,84, 91, 92, 96, 97, 102, 104, 106, 108, 109, 111, 112, 115, 116, 121, 124, 125]

8

4

11

8

9

1

1

13

31

 Impact of SDM on time (7)

[50, 56, 64, 65, 104, 105, 116]

5

2

1

5

3

5

10

4

11

8

10

1

1

18

34

B

F

B

F

B

F

B

F

B

F

  Agree with/desire for SDM/DM involvement (31)

[58, 60, 64, 67,68,69,70, 72,73,74,75, 80, 81, 83, 85,86,87,88, 94, 102, 106, 109, 112, 113, 116, 119, 121, 124, 125, 127]

1

5

2

15

7

11

10

31

  Beliefs about consequences (7)

[29, 30, 32, 50, 85, 99, 93, 95, 104]

4

3

1

3

1

10

  Parents/children cannot understand information (6)

[56, 64, 70, 91, 105, 115]

5

1

6

  Beliefs about capabilities (6)

[59, 61, 64, 81, 103, 113, 124]

3

2

2

1

1

6

4

  Motivation (5)

[50, 51, 56, 105, 125]

3

2

1

1

1

5

3

  Knowledge of SDM, policy (4)

[29, 58, 105, 118]

4

2

1

7

  Satisfied with current DM approach (3)

[105, 107, 124]

1

1

2

4

  Child/parent health status (17)

[38, 43, 44, 46, 48, 50, 51, 54, 56–59, 64, 65, 69, 70, 75, 87, 90, 99, 101]

3

3

5

3

3

3

1

11

10

  Parent/child’s emotional state (16)

[29, 34, 38, 41, 46, 55, 64, 66, 67, 77, 84, 87, 93, 95, 96, 99]

5

5

5

1

3

1

14

6

  Child’s age and competence (15)

[29, 37, 38, 42–44, 48, 52–54, 70, 86, 87, 96, 99]

4

6

1

4

2

8

9

  HCP’s SDM skills (14)

[29, 64, 66, 68, 69, 75, 95, 97, 99,100,101, 108, 116, 124]

3

3

1

2

1

5

10

5

  Parent/child race, ethnicity, culture, and language (7)

[58, 67, 89, 93, 95, 103, 125]

3

2

2

1

1

6

2

  Parent socioeconomic status (7)

[88,89,90, 93, 95, 104, 118]

2

1

3

1

1

6

  HCP age/seniority/specialty (6)

[57, 58, 61, 73, 90, 123]

1

3

1

1

3

3

  Child’s behavior/maturity (6)

[58, 67, 68, 79, 107, 119]

3

2

1

1

3

4

  Parent’s health insurance (5)

[54, 59, 89, 93, 95, 109]

1

1

2

1

4

1

  HCPs role as advocate (6)

[60, 73, 91, 111, 113, 115]

1

3

2

1

1

6

  Child experience with condition (4)

[67, 69, 72, 104]

2

2

4

  HCP assuming parent/child preference for involvement (3)

[61, 85, 112]

1

1

1

3

  Parental absence during SDM discussion (2)

[73, 110]

2

2

  Parent health literacy (2)

[94, 125]

1

2

3

  Parent’s sex or gender (2)

[108, 123]

1

1

2

39

44

29

33

28

25

9

4

111

108

B

F

B

F

B

F

B

F

B

F

 Trust and respect in relationship (29)

[30, 34, 41, 46, 49, 50, 52, 55, 61, 63–68, 71, 72, 75, 80, 82, 84, 87–89, 92, 96, 99, 104, 105]

2

7

2

13

1

7

1

5

28

 Extent adopters invite/support parent/child participation in DM (23)

[29, 60, 66, 69,70,71, 75, 83, 92, 94, 96, 98, 102, 107,108,109, 111, 112, 115,116,117, 123, 124]

1

4

3

8

1

4

2

1

7

17

 Power relations (17)

[66, 68,69,70, 73, 81, 87, 96, 106, 107, 110, 111, 114, 116, 119, 121]

3

3

1

9

1

1

16

2

 Biasing other adopters (12)

[58, 59, 64, 74, 97, 99, 104, 109, 119, 120]

5

1

2

3

11

 Recognition of HCP/parent expertise (6)

[72, 81, 86, 87, 112, 124]

1

1

4

1

2

5

 Conflict (3)

[64, 116, 119]

1

2

1

4

12

12

12

26

15

12

6

2

45

52

B

F

B

F

B

F

B

F

B

F

 Time (11)

[29, 62,63,64, 69, 105, 107, 109, 119, 124, 125]

8

1

2

2

12

1

 Access to tools/resources/training to promote SDM (10)

[52, 53, 55, 56, 65, 67, 82, 103, 104, 122, 125]

4

6

2

1

4

10

 Workflow and continuity of care (10)

[63, 69, 84, 104, 105, 109, 115,116,117, 125]

8

2

2

1

11

2

 Norms (e.g., organizational policy consistent with SDM, expectations that HCP make the decision) (11)

[29, 64, 68, 74, 94, 104, 105, 107, 113, 126]

5

2

3

1

4

1

12

4

 Clinical setting (e.g., emergency room) or situation (e.g., urgency) (8)

[29, 58, 87, 104, 105, 107, 114, 127]

4

2

3

1

1

8

3

 Physical arrangement (e.g., seating) (3)

[96, 104, 124]

1

1

1

2

1

 Stability of home environment (2)

[59, 119]

1

1

1

2

1

31

13

11

4

9

3

1

50

22