Background
Methods
Setting
Study design
Intervention
Risk and needs assessment form
What is your relation to you ill relative? | ||||
---|---|---|---|---|
Do you have children in your household that you are (partly) responsible for? | ||||
Not at all | A little | Some | A lot | |
Do you need information about your relative’s disease and/or your current situation? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you and your relative need further help to alleviate disease symptoms, including giving medicine? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you need information about who to contact if you need help, including at night? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you need help to clarify economic, legal, housing or work-related issues? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you need knowledge about what to expect in the course of your relative’s disease? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you need support to talk with your relative about his/her disease and its consequences? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you feel as if you lack support from family and friends? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you feel overwhelmed by practical tasks or tasks in relation to caring for your ill relative? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you need help to take breaks from caring for your ill relative, or taking care of your own needs? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you need help to cope with your own thoughts, feelings or worries? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you have thoughts about religion/spirituality or life and death, that you feel you need to talk about? | ⎕ | ⎕ | ⎕ | ⎕ |
Do you feel depressed? | ⎕ | ⎕ | ⎕ | ⎕ |
Have you experienced significant losses earlier in your life that places a strain on you now? (e.g. regarding health, job, divorce, or death?) | ⎕ | ⎕ | ⎕ | ⎕ |
Do you suffer from a mental illness (e.g. depression, stress or anxiety) that has been diagnosed by a medical doctor? | Yes ⎕ | No ⎕ | ||
If yes, which illness? |
The medical research council framework
Intervention inputs | Intervention components | Feasibility outcomes | Outcomes for caregiver support procedures | Impact |
---|---|---|---|---|
Bereavement support standards for caregivers in palliative careb
Risk and needs assessment form based on standardsb and systematic literature reviewc
Possibility of creating electronic medical record for caregivers | 1. Systematic risk and needs assessment at care entry 2. Interdisciplinary conference to prepare support plan 3. Targeted support from interdisciplinary team 4. Establishment of an electronic medical record for caregivers to document targeted support | Reach, fidelity and acceptability of intervention components Contextual factors: Any external factors to the intervention that may act as a barrier or facilitator to its implementation | 1. Ensures focus on caregivers, exposes needs swiftly, allows targeted support initiation 2. Ensures interdisciplinary assessment of risks and needs 3. Support is tailored to caregivers’ needs 4. Enables systematic planning of intervention and sharing of information between professionals, secures follow up | Reduces distress during caregiving and prevents distress following bereavement Targeted support: Support aligns with needs Improved use of resources in palliative care |
Process evaluation outcomes
Ethics, consent and permissions
Results
Intervention components | Feasibility outcomes | Barriers to implementation |
---|---|---|
1. Systematic risk and needs assessment at care entry | • Participation rate was 46%. • Systematic risk and needs assessment was conducted for all included caregivers at enrollment (n = 76). | • Ad hoc assessment was considered sufficient by palliative care staff, resulting in reservations in conducting systematic assessment. • Shortage of time at the first home visit to conduct caregiver assessment. • Caution with confronting caregivers with severity of disease at first home visit and eliciting strong emotional responses. |
2. Interdisciplinary conference to prepare support plan | • Interdisciplinary risk and needs assessment and support plan was conducted for 75% of caregivers. | • Time shortage at conference • Concern that focus is directed away from patient. |
3. Targeted support from interdisciplinary team | • Targeted support was offered to 29% of caregivers. | • Indistinctness in professional role distribution. |
4. Establishment of electronic medical record for caregivers to document targeted support | • A medical record was established in accordance with the intervention blueprint in 62% of caregivers who received targeted support | • Ethical considerations about medical records for caregivers with no formal diagnosis. • Reservation regarding sharing information with emotional content. |
Reach
Fidelity
Acceptability
Agree or strongly agree N (%) | Neither agree nor disagree N (%) | Disagree or strongly disagree N (%) | |
---|---|---|---|
The assessment tool provides an overview of the caregiver’s needs | 9 (100) | 0 (0) | 0 (0) |
It gives me an idea about what to ask the caregiver when I see him/her again | 9 (100) | 0 (0) | 0 (0) |
The assessment tool gives me an idea of the caregiver’s risk of distress after the patient’s death | 8 (89) | 1 (11) | 0 (0) |
The assessment tool is helpful in the interdisciplinary work | 7 (78) | 2 (22) | 0 (0) |
It can be difficult to find time to introduce the assessment tool at the first home visit | 6 (67) | 3 (33) | 0 (0) |
The assessment tool does not provide the information I need to support the caregiver | 0 (0) | 0 (0) | 9 (100) |
It can be difficult to introduce the caregiver to the assessment tool | 4 (44) | 3 (33) | 2 (22) |
I get a sufficient impression of caregiver needs by talking informally to the caregiver and making my own observations, rather than using the assessment tool. | 0 (0) | 4 (44) | 5 (56) |