Table 3.
Quality of support, needs, bereavement and health outcomes
| All (n = 35) |
Health Institution (n = 13) |
Home care (n = 22) |
p-value* | ||||
|---|---|---|---|---|---|---|---|
| Quality of support | n | n | n | ||||
| Quality of family support (ICE-FPSQ) 1 sum (range) | 31 | 50.0 (14.0–70.0) | 9 | 35.0 (14.0–70.0) | 22 | 55.0 (23.0–70.0) | 0.094 |
| ICE-FPSQ Cognitive support | 31 | 20.0 (5.0–25.0) | 9 | 12.0 (5.0–25.0) | 22 | 20.5 (7.0–25.0) | 0.094 |
| ICE-FPSQ Emotional support | 31 | 34.0 (9.0–45.0) | 9 | 25.0 (9.0–45.0) | 22 | 34.5 (16.0–45.0) | 0.174 |
| Quality of EoL care (CANHELP) 2 mdn (range) | 26 | 4.2 (2.2-5.0) | 9 | 4.1 (3.3-5.0) | 17 | 4.3 (2.2-5.0) | 0.958 |
| Support providersn (%) | |||||||
| Nurses | 35 | 34 (97.1) | 13 | 13 (100.0) | 22 | 21 (95.5) | |
| Physicians | 34 | 18 (52.9) | 12 | 7 (53.3) | 22 | 11 (50.0) | |
| Medical assistants | 35 | 28 (80.0) | 13 | 12 (92.3) | 22 | 16 (72.7) | |
| Chaplains | 34 | 15 (44.1) | 12 | 6 (50.0) | 22 | 9 (40.9) | |
| Therapists | 34 | 4 (11.8) | 12 | 1 (7.7) | 22 | 3 (13.6) | |
| Social workers | 35 | 7 (20.0) | 13 | 3 (23.1) | 22 | 4 (18.2) | |
| Others | 34 | 9 (26.5) | 12 | 1 (7.7) | 22 | 8 (36.4) | |
| Fulfillment of needs (NAFC-BvC) 3 mdn (range) | n | n | n | ||||
| Taking part in your usual social/recreational activities (item 1) | 33 | 3.0 (0.0–6.0) | 11 | 3.0 (0.0–3.0) | 22 | 2.5 (0.0–6.0) | 0.693 |
| Talking to others who have lost a loved one to cancer (item 2) | 32 | 0.5 (0.0–9.0) | 12 | 1.0 (0.0–6.0) | 20 | 0.5 (0.0–9.0) | 0.774 |
| Reorganizing roles among family members (item 3) | 35 | 0.0 (0.0–16.0) | 13 | 0.0 (0.0–6.0) | 22 | 1.0 (0.0–16.0) | 0.287 |
| Taking care of bills (item 4) | 33 | 0.0 (0.0–12.0) | 11 | 0.0 (0.0–4.0) | 22 | 0.0 (0.0–12.0) | 0.418 |
| Talking with other people about cancer (item 5) | 33 | 2.0 (0.0–6.0) | 11 | 2.0 (0.0–3.0) | 22 | 2.0 (0.0–6.0) | 0.895 |
| Dealing with emotional distress of other family members (item 6) | 32 | 0.0 (0.0–9.0) | 11 | 0.0 (0.0–6.0) | 21 | 0.0 (0.0–9.0) | 0.584 |
| Finding meaning out of your experience with his/her cancer (item 7) | 32 | 0.0 (0.0–6.0) | 11 | 0.0 (0.0–6.0) | 21 | 0.0 (0.0–4.0) | 0.815 |
| Getting help with your household activities (item 8) | 34 | 0.0 (0.0–12.0) | 12 | 0.0 (0.0–12.0) | 22 | 0.0 (0.0–6.0) | 0.901 |
| Understanding medical and/or insurance coverage (item 9) | 34 | 0.0 (0.0–12.0) | 12 | 0.0 (0.0–9.0) | 22 | 0.0 (0.0–12.0) | 0.873 |
| Being satisfied with your relationship with family members / friends (item 10) | 33 | 3.0 (0.0–9.0) | 12 | 3.0 (0.0–9.0) | 21 | 3.0 (0.0–6.0) | 0.811 |
| Taking care of your own health (item 11) | 34 | 3.0 (0.0–12.0) | 12 | 3.0 (0.0–8.0) | 22 | 3.0 (0.0–12.0) | 0.986 |
| Dealing with lifestyle changes (item 12) | 33 | 2.0 (0.0–16.0) | 12 | 1.0 (1.0–9.0) | 21 | 2.0 (0.0–16.0) | 0.618 |
| Dealing with your emotional distress (item 13) | 34 | 3.0 (0.0–16.0) | 13 | 1.0 (0.0–9.0) | 21 | 3.0 (0.0–16.0) | 0.400 |
| Getting help from others to take time for yourself (item 14) | 34 | 0.0 (0.0–12.0) | 12 | 0.0 (0.0–12.0) | 22 | 1.0 (0.0–9.0) | 0.363 |
| Meeting your personal needs (item 15) | 32 | 2.0 (0.0–6.0) | 10 | 2.5 (0.0–6.0) | 22 | 2.0 (0.0–4.0) | 0.795 |
| Getting together with family / friends (item 16) | 32 | 3.0 (0.0–9.0) | 10 | 3.0 (0.0–4.0) | 22 | 1.5 (0.0–9.0) | 0.219 |
| Taking time off from work (item 17) | 32 | 0.0 (0.0–12.0) | 10 | 0.0 (0.0–3.0) | 22 | 0.0 (0.0–12.0) | 0.646 |
| Understanding/navigating the health care system (item 18) | 32 | 2.0 (0.0–8.0) | 10 | 2.5 (0.0–8.0) | 22 | 1.0 (0.0–8.0) | 0.889 |
| Helping other family members find meaning out of his/her cancer (item 19) | 33 | 0.0 (0.0–8.0) | 11 | 0.0 (0.0–6.0) | 22 | 0.0 (0.0–8.0) | 1.000 |
| Getting legal paperwork done (item 20) | 32 | 2.5 (0.0–16.0) | 11 | 3.0 (0.0–16.0) | 21 | 2.0 (0.0–16.0) | 0.639 |
| Bereavement and health outcomes | |||||||
| Coping 4 mdn (range) | |||||||
| Meaning-Making | 34 | 1.5 (1.0–5.0) | 12 | 1.0 (1.0–4.0) | 22 | 2.5 (1.0–5.0) | 0.444 |
| Benefit-finding | 34 | 4.0 (1.0–5.0) | 12 | 4.0 (1.0–5.0) | 22 | 3.0 (1.0–5.0) | 0.231 |
| Identity change | 33 | 2.0 (1.0–4.0) | 12 | 2.4 (1.0–4.0) | 21 | 2.0 (1.0–4.0) | 0.518 |
| Resilience (BRS-6) 5 mdn (range) | 34 | 3.5 (2.3-5.0) | 12 | 3.8 (2.8-5.0) | 22 | 3.4 (2.3-5.0) | 0.136 |
| Grief intensity (BGQ-5) 6 mdn (range) | 34 | 4.0 (0.0–10.0) | 12 | 4.0 (0.0–7.0) | 22 | 5.0 (0.0–10.0) | 0.309 |
| Self-perceived health 7 mdn (range) | |||||||
| Self-perceived health | 33 | 81.0 (28.0-100.0) | 12 | 90.0 (50.0-100.0) | 21 | 75.0 (28.0-100.0) | 0.228 |
| Sense of well-being | 33 | 66.0 (21.0-100.0) | 12 | 67.50 (40.0-100.0) | 21 | 66.0 (21.0-100.0) | 0.567 |
| Self-perceived stress | 33 | 40.0 (0.0–90.0) | 12 | 24.5 (0.0–85.0) | 21 | 60.0 (0.0–90.0) | 0.122 |
Note. mdn = median, * p-value of a two-sided Mann-Whitney U-test between the groups health institution and home-care
1 ICE-FPSQ = “ICEland Family Perceived Support Questionnaire”, score range: 14–70; high score = high quality of received support, “ICE-FPSQ Cognitive subscale”, score range: 5–25, high score = high quality of received cognitive support, “ICE-FPSQ Emotion subscale”, score range: 9–45, high score = high quality of received emotional support
2 CANHELP = “CANadian Health Care EvaLuation Project– Bereavement version”, score range: 1–5, high score = high satisfaction in EoL care
3 NAFC-BvC = “Needs Assessment of Family Caregivers– Bereaved to Cancer”, score range: 0–16, high score = no fulfillment
4 “Meaning-making question”, score range: 1–5; high score = having made a good deal of sense of the death, “Benefit finding question”, score range: 1–5, high score = great benefit, “Identity change”, score range: 1–5, high score = very different sense of identity
5 BRS-6 = “Brief Resilience Scale”, score range: 1–5; high score = high resilience
6 BGQ-5 = “Brief Grief Questionnaire”, score range: 0–10; low score = low grief reaction
7 Self-developed questions, score range: 0-100; high score = high self-perceived health / high sense of well-being / high self-perceived stress