Table 2.
Counts and Percentages Describing Legacy-Making Activities
| Survey item | 2012 Study (n = 77), n (%) | 2020 Study (n = 54), n (%) | p |
|---|---|---|---|
| What legacy-making activities does your facility offer? (select all that apply) | |||
| Hand molds/handprints | 75 (97.4) | 54 (100) | 0.732 |
| Lock of hair | 68 (88.3) | 53 (98.1) | 0.025 |
| Memory book or journal | 65 (84.4) | 38 (70.4) | 0.004 |
| Photography | 58 (75.3) | 36 (66.7) | 0.138 |
| Art | 47 (61.0) | 35 (64.8) | 0.577 |
| Writing (letters, poetry, etc.) | 44 (57.1) | 22 (40.7) | 0.014 |
| Songwriting/music | 35 (45.5) | 30 (55.6) | 0.133 |
| Video | 15 (19.5) | 10 (18.5) | 0.864 |
| Other | 15 (19.5) | 21 (38.9) | <0.001 |
| What department or program offers these activities? (select all that apply) | |||
| Child life | 73 (94.8) | 53 (98.1) | 0.269 |
| Nursing | 36 (46.8) | 17 (31.5) | 0.025 |
| Palliative care | 22 (28.6) | 13 (24.1) | 0.469 |
| Other | 17 (22.1) | 9 (16.7) | 0.341 |
| Hospice | 5 (6.5) | 2 (3.7) | 0.407 |
| Who participates in completing the activity? (select all that apply) | |||
| Patient and his/her family together | 59 (76.6) | 43 (79.6) | 0.607 |
| Staff (e.g., staff does the activity and gives the result to the family) | 52 (67.5) | 42 (77.8) | < 0.001 |
| Family alone | 26 (33.8) | 24 (44.4) | 0.095 |
| Patient alone | 25 (32.5) | 22 (40.7) | 0.191 |
| Other | 20 (26.0) | 12 (22.2) | 0.535 |
| What pediatric patients are offered legacy-making activities? (select all that apply) | n = 53 | ||
| Patients with any life-threatening illness | 65 (84.4) | 46 (86.8) | 0.623 |
| Patients with cancer | 33 (42.9) | 25 (47.2) | 0.523 |
| Other | 24 (31.2) | 19 (35.8) | 0.458 |
| Patients with neurodegenerative diseases | 23 (29.9) | 21 (39.6) | 0.118 |
| Approximately how many patients at your facility participate in legacy-making activities each year? | n = 74 | n = 52 | <0.001 |
| 0–10 | 25 (33.8) | 3 (5.8) | |
| 11–20 | 7 (9.5) | 9 (17.3) | |
| 21–30 | 17 (23.0) | 10 (19.2) | |
| 31–40 | 12 (16.2) | 5 (9.6) | |
| 41–50 | 6 (8.1) | 4 (7.7) | |
| >50 | 7 (9.5) | 21 (40.4) | |
| What point in the illness trajectory are patients and/or families offered these activities? | n = 73 | 0.013 | |
| Before the patient dies: when cure is no longer being sought | 31 (42.5) | 17 (31.5) | |
| Other | 23 (31.5) | 27 (50.0) | |
| After a child dies | 10 (13.7) | 8 (14.8) | |
| Before the patient dies: soon after patient's diagnosis | 9 (12.3) | 2 (3.7) | |
| Legacy-making activities are offered | n = 72 | n = 53 | 0.679 |
| As a part of standard of care | 70 (97.2) | 52 (98.1) | |
| Only if requested by the patient and/or their family | 2 (2.8) | 1 (1.9) | |
| What is the goal of these activities provided at your facility? (select all that apply) | |||
| To benefit bereaved families | 69 (89.6) | 51 (94.4) | 0.246 |
| To benefit child/patient | 59 (76.6) | 41 (75.9) | 0.898 |
| To benefit the family while the child is ill | 53 (68.8) | 42 (77.8) | 0.158 |
| Other | 8 (10.4) | 5 (9.3) | 0.789 |
| How do these activities help your patients and families? (select all that apply) | |||
| Gives family members tangible ways to remember the deceased child | 74 (96.1) | 54 (100.0) | 0.439 |
| Coping strategy for family members who have experienced the death of a child | 66 (85.7) | 49 (90.7) | 0.293 |
| Coping strategy for child patients | 58 (75.3) | 37 (68.5) | 0.243 |
| Coping strategy for family members who have an ill child | 57 (74.0) | 46 (85.2) | 0.062 |
| Creates an opportunity for children and families to talk about death | 57 (74.0) | 41 (75.9) | 0.756 |
| Creates an opportunity for child patients to express themselves | 54 (70.1) | 42 (77.8) | 0.223 |
| Gives children opportunities to do or say something to be remembered | 52 (67.5) | 41 (75.9) | 0.191 |
| Other | 7 (9.1) | 9 (16.7) | 0.052 |
| What do you perceive is difficult for patients or families participating in legacy-making activities? (select all that apply) | |||
| It is emotionally hard for families to participate (e.g., it takes hope away from families) | 59 (76.6) | 45 (83.3) | 0.247 |
| It is physically hard for patients to participate (e.g., they are too sick, too tired) | 35 (45.5) | 34 (63.0) | 0.009 |
| It is emotionally hard for children to participate (e.g., these activities make children sad) | 21 (27.3) | 13 (24.1) | 0.603 |
| It is developmentally difficult for children (e.g., these children do not understand what these activities mean) | 16 (20.8) | 13 (24.1) | 0.546 |
| Other | 9 (11.7) | 14 (25.9) | 0.001 |
Totals for each survey item may be >100% as respondents were allowed to select multiple responses.