Table 2 First round - rating of the 46 needs aspects (n = 68)
Distribution of the ratings along the scale (%) | ||||||
|---|---|---|---|---|---|---|
Needs aspects | DIMa | Median | Mean (SD) | 1–3 | 4–6 | 7–9 |
Information on the neurocognitive disease and its progressionb | INF-P | 9 | 8.39 (1.10) | 0 | 7 | 93 |
Providing emotional and affective support to PWNCDb | SKI-C | 9 | 8.32 (1.32) | 2 | 6 | 92 |
Information on cognitive disordersb | INF-P | 9 | 8.23 (1.13) | 0 | 9 | 91 |
The diagnostic process of the neurocognitive diseaseb | INF-P | 9 | 8.19 (1.24) | 0 | 11 | 89 |
Communication between caregivers and PWNCDb | SKI-C | 9 | 8.17 (1.41) | 0 | 14 | 86 |
Management of the PWNCD painb | SKI-C | 9 | 8.17 (1.35) | 2 | 6 | 92 |
Coping with cognitive disordersb | SKI-C | 9 | 8.11 (1.39) | 0 | 15 | 85 |
Coping with behavioral crisis at homeb | SKI-C | 9 | 8.09 (1.66) | 2 | 12 | 86 |
Coping with behavioral disordersb | SKI-C | 9 | 8.01 (1.49) | 1 | 12 | 87 |
The research (disease and therapies) b | INF-P | 9 | 8.01 (1.34) | 0 | 16 | 84 |
Roles of the health professionals involved in the PWNCD care pathwayb | INF-P | 9 | 7.96 (1.39) | 0 | 15 | 85 |
Information on behavioral disordersb | INF-P | 9 | 7.94 (1.74) | 5 | 10 | 85 |
Information on the drugs for the neurocognitive disease (efficacy, tolerance and utilization) b | INF-P | 9 | 7.84 (1.69) | 4 | 14 | 82 |
Undertaking the steps for the services utilization b | SKI-S | 9 | 7.50 (2.35) | 9 | 13 | 78 |
Finding available services closer to homeb | SKI-S | 9 | 7.49 (2.31) | 7 | 15 | 78 |
Learning to adjust the sedative drug dose based on the patient’s condition (e.g. sedation, agitation) | SKI-M | 8.5 | 6.97 (2.7) | 14 | 19 | 67 |
Coping with the relationship evolution between caregivers and PWNCDb | SKI-C | 8 | 7.83 (1.40) | 0 | 20 | 80 |
Stimulating/appropriates activities for PWNCD at homeb | SKI-C | 8 | 7.79 (1.59) | 1 | 19 | 80 |
Basic care to PWNCDb | SKI-C | 8 | 7.74 (1.67) | 2 | 15 | 83 |
Information on the PWNCD drugs for comorbidities (efficacy, tolerance and utilization) b | INF-P | 8 | 7.56 (1.66) | 3 | 21 | 76 |
Coping with feeling related to caring (e.g, frustration, culpability, stress) | SKI-C | 8 | 7.53 (1.79) | 3 | 23 | 74 |
Financial issues for the ADLb | INF-S | 8 | 7.5 (2.19) | 8 | 13 | 79 |
Information on non-pharmacological treatment for PWNCD | INF-P | 8 | 7.45 (1.59) | 0 | 30 | 70 |
Communicating on the PWNCD disease and the caregiver role with the entourage | SKI-C | 8 | 7.44 (1.85) | 3 | 26 | 71 |
Information on nursing care at home | INF-S | 8 | 7.24 (2.41) | 9 | 17 | 74 |
Legal issues | INF-S | 8 | 6.98 (2.24) | 7 | 26 | 67 |
Information on respite, day care | INF-S | 8 | 6.90 (2.65) | 13 | 17 | 70 |
Information on institutionalization and long-term care unit | INF-S | 8 | 6.90 (2.50) | 11 | 25 | 64 |
Being able to manage the PWNCD drugs | SKI-M | 8 | 6.55 (2.87) | 20 | 20 | 61 |
Information on the consequences of caregiving (caregiver health) | INF-C | 7 | 7.09 (1.97) | 5 | 29 | 66 |
Learning to seek and accept help from the entourage | SKI-C | 7 | 6.92 (2.01) | 3 | 35 | 62 |
Information on associations and foundations | INF-S | 7 | 6.60 1.93) | 5 | 38 | 57 |
Information on environmental safety | INF-S | 7 | 6.34 2.37) | 12 | 33 | 55 |
Coping with difficulties to administer the PWNCD drugs | SKI-M | 7 | 6.22 (2.82) | 20 | 25 | 55 |
Review of the PWNCD drug prescribing by a pharmacist (optimization of the therapeutics) | SUP-P | 7 | 6.01 (2.68) | 18 | 31 | 51 |
Being able to manage their drugs (caregiver’s drugs) | SKI-M | 7 | 5.40 (3.33) | 35 | 14 | 51 |
Annual medical check-up for caregiver by a GP | SUP | 6.5 | 6.23 (2.70) | 17 | 33 | 50 |
Information on drugs for caregiver’s psychological disorders | INF-C | 6 | 6.25 (3.35) | 10 | 45 | 45 |
Information on the caregiver’s drugs (efficacy, tolerance and utilization) | INF-C | 6 | 5.98 (2.58) | 16 | 42 | 42 |
Support by a social worker | SUP | 5 | 5.67 (2.92) | 24 | 36 | 40 |
Obtaining a form with timing of PWNCD drug administration | SUP-P | 5 | 5.62 (2.82) | 20 | 39 | 41 |
Identification and resolution of difficulties associated with the PWNCD drug management | SUP-P | 5 | 5.44 (2.77) | 22 | 39 | 29 |
Emotional support for the caregiver by a psychologist | SUP | 5 | 4.76 (2.56) | 29 | 44 | 27 |
Review of the caregiver drug prescribing by a pharmacist (optimization of the therapeutics) | SUP-P | 2.5 | 3.62 (2.81) | 53 | 28 | 19 |
Identification and resolution of the difficulties associated with the caregiver’s drug management | SUP-P | 2.5 | 3.52 (2.70) | 53 | 28 | 19 |
Obtaining a form with timing of caregiver drug administration | SUP-P | 2 | 3.42 (2.90) | 58 | 23 | 19 |