Table 3.
CSNAT Approach Paediatric: support plan for prioritised needs of family caregivers
| PID | Domain priority 1 | Support need in relation to prioritised domain (session 1) | Agreed action plan to address support need | Review of plan (session 2) | Domain priority 2 | Support need in relation to prioritised domain (session 1) | Agreed action plan to address support need | Review of plan (session 2) | Domain priority 3 | Support need in relation to prioritised domain (session 1) | Agreed action plan to address support need | Review of action plan (session 2) |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
|
| ||||||||||||
| 1 | Looking after your own health | Time away from caregiving for personal needs’make myself a priority’ | Day off from work for medical appointments. Look for someone else to take girls to appointments. Family Medical Leave to take from work. | Relied on memory and did not look at plan. Working on preparations for daughter that has provided mental peace. | Practical help in the home | 05:00 help with child and 1 hour 21:00– 22:00 with children. Saturday alone time for naps. | Maybe care.com. A 10 year old to take on more responsibility for bedtime routine. Autism waiver for someone to come. Talk to Dad. | Dad lost his brother this week, has too much stress currently for additional help. Will reach out to care.com. | Getting a break from overnight caregiving | Childcare while awake at night | Dad to help on his days off. Continue with medication wean to get to clinical trial. | Dad maybe wiling to be open for help in the morning due to stress. Adjust autism aide hours to accommodate. |
| 2 | Understanding your child’s illness | Further education on specific items related to illness | Give some time. | Will discuss questions with Physician’s Assistant and Registered Nurse. | Having time for yourself in the day | More evening rest and weekend time | Earlier bedtime, set routine, commit to yoga. | No progress yet made | Not indicated | N/A | N/A | N/A |
| 3 | Equipment to help care for child | Improved Hoyer lift, having the manual lift, beach wheelchair, bath chair | Will talk with equipment supplier, website beach wheelchair. | Once things calm down at appointment on 28th | Getting a break from night-time care | One night Dad has monitor to listen. | Share night observation times. | Discussion completed on weekend | Your financial, legal, work issues | Veterans Administration to change payments for insurance |
Assistance with Medicaid and hospital-related insurance changes. Social work reach out to info number. | Sent out all information to listed contact. |
| 5 | Your financial, legal, work issues | Job cut back for patient’s appointments. Husband is now back to work. | Wheelchair lift for car. Home Hoyer lift, legislative outreach. | Mom found agency doing home (free) devices created by Anelents she will apply for. | Having time for yourself in the day | Needs time to get out of the house | Niece is always on vacation, when she comes back for school she will speak with her about help. | Will speak to niece about help when she comes back from vacation. | Not indicated | N/A | N/A | N/A |
| 6 | Your financial, legal, work issues | Not working right now, new job, will now lose some benefits because of income. Had to leave previous job because of multiple calls for son. | Will reach out to other parents at Children’s National. Have facility, after school hours, and night care. | Reach out to patient care advocate. | Knowing what to expect in the future when caring for your child | How to deal with managing all the details of disease. Being mom and not knowing when the end may come. | Will reach out to PANDA+HELP team if needed. Will talk with doctors as a support system. Turned down hospice too negative. | Appointment with PANDA Palliative Care Team today which was helpful | Not indicated | N/A | N/A | N/A |
| 7 | Having time for yourself in the day | No way to get out of the house. Has a waiver for healthcare aid. | Use randomly Dad for visits. Health aide. Respite programme every other Sunday. | Dad came Monday and Mom got some time out. Will use respite Sunday to see StarWars. | Looking after your own health (physical problems) | Forgot to schedule any appointments for self | Recently scheduled some appointments | One appointment missed, will call back. More appointments to come. | Not indicated | N/A | N/A | N/A |
PID 004 withdrew at baseline.
CSNAT, Carer Support Needs Assessment Tool; N/A, not applicable; PID, participant ID.