Patient and caregiver views on factors affecting the experience of transitioning from hospital to home: home and community care supports
| Unique concept | Representative quote* |
|---|---|
| Home care support being in place when arriving home from hospital | After moving home, it took over 3 weeks before we were linked to any home support services. (Female patient, age 26–49) My father received home care after a week, not 24 hours, as indicated by hospital discharge staff. (Caregiver of male patient, age 50–64) |
| Consistency of home care staff | No consistency of care … too many different PSWs; at one point, my mother (with dementia) had 8 different PSWs in 1 week. (Caregiver of female patient, age ≥ 80) My mother didn’t have enough home care support that was consistent; she had dementia, and she had 14 different workers in 7 days. (Caregiver of female patient, age ≥ 80) |
| Reliability of home care staff | Several days after [my husband came] home, case workers started to arrive to assess my husband to determine what I will be needing for home care help. Finally got some help coming to [the] house but not enough hours … as well as numerous no-shows as well as no phone calls to say they are not coming. Just because my husband cannot talk does not mean that his caregiver cannot talk to him. (Caregiver of male patient, age 65–79) Three times a PSW never showed up to help, and no call was sent to let us know they could not make it. (Caregiver of male patient, age 50–64) |
| Sufficiency of publicly funded home care | We had to offset home care with private and family support. (Caregiver of male patient, age ≥ 80) Limited hours offered by CCAC to support a failing 90-year-old woman in her own apartment. (Caregiver of female patient, age ≥ 80) After leaving the hospital, my loved one did not have enough care for both morning (wake/bathe/dress) and evening (dinner preparation, clean-up, undress/hygiene/bedclothes) routine. (Caregiver of female patient, age ≥ 80) |
| Having to advocate to get enough home care | Had little to no help from CCAC coordinators. Had to fight to get help. (Female patient, age 50–64) Patients who cannot express themselves well [because of] cognitive or other barriers are roughly treated, and, if there is no advocate, it doesn’t get addressed. (Caregiver of female patient, age 65–79) It took a lot of work to access the home care services my loved one required and multiple phone calls. (Caregiver of female patient, age ≥ 80) |
| Consistent coordination and level of home care between communities | Home care is based on geography. When my relative moved from home to respite care back to her apartment, her care coordinator kept changing. (Caregiver of female patient, age ≥ 80) There was a gap with CCAC because there were 2 LHINs involved, but once the communication was done, we were contacted. (Caregiver) |
| Consideration of home safety and accessibility during discharge planning | There was no consideration whether the home environment was safe to go back to. It wasn’t, but the hospital didn’t care. They said it wasn’t their problem. (Caregiver of male patient, age 65–79) When I took my brother home, his apartment was not accessible, and I had to make all the necessary changes to help. (Caregiver of male patient, age 26–49) |
| Medically necessary equipment being in place at home when discharged | I was not given enough time to arrange how to get my necessary equipment. (Female patient, age 50–64) CCAC did not have the equipment ready for us when we arrived home. It took 2 days to receive a crucial piece of equipment. (Caregiver of female patient, age ≥ 80) |
| Cost of medically necessary equipment | All the needed equipment — canes, walkers, raised toilet seats and bath seats — were bought by the patient’s family. (Caregiver of male patient, age 65–79) Beds, support equipment free for 28 days. Is it expected that a person is back to normal in 28 days???? The [Assistive Devices Program] does not cover all the equipment. (Caregiver of female patient, age ≥ 80) |
| Availability of community mental health supports | Mental health support was not considered or offered. (Caregiver of male patient, age 6–18) A suicidal child was discharged home; connection was made with community agency, but 1-year wait time for intensive therapy. (Caregiver) |
| Availability of community palliative care supports | Lack of community resources for patient. (Caregiver of person age ≥ 80) Palliative care doc was accessible and responsive. He came late at night, explained everything. He answered texts directly and quickly. (Caregiver of female patient, age 50–64) |
| Timeliness of publicly funded community-based physiotherapy, occupational therapy and other rehabilitation supports | Community therapy services were only available on a fee-for-service basis while waiting for 10 weeks for an OHIP-funded program. (Caregiver of male patient, age 19–25) Six weeks after my hospital discharge, I still had to wait 3 weeks for CCAC, [occupational therapy] and [physiotherapy]. (Female patient, age 65–79) |
| Sufficiency of publicly funded community-based physiotherapy, occupational therapy and other rehabilitation supports | [Physiotherapy] only once per week is not enough for someone who could perhaps learn to be mobile and more self-sufficient. Again, we are lucky to afford our own support, but this shouldn’t be necessary. (Caregiver of person age ≥ 80) [The] only [rehabilitation] was five 1-hour visits paid for by OHIP in second month after surgery. (Female patient, age 65–79) |
| Availability of support services such as housecleaning, laundry and meals | People who need more supportive care are given restricted [care] — only bathing or extremely minor assistance. Of no real help to keep people housed independently; their home is left unclean, and no help with food. I needed someone to help with some cleaning. (Caregiver of female patient, age 65–79) |
| Arranging support services such as housecleaning, laundry, and meals | The need to figure out where to find support services for services beyond what CCAC would provide [such as] housecleaning, laundry for someone with very limited income. (Caregiver of male patient, age 65–79) Community services were not in place, and [patients are expected to organize] support such as CCAC, Wheel-Trans. (Facilitated group participant) |
| Reliance on family and friends to provide care after discharge | No one is available to get my mom to bed at night, so we have to do it. We go from 6:30 to 10 or 11 at night and get up for work at 5:30 am. (Caregiver of female patient, age 65–79) After leaving hospital, my family member didn’t have enough home care support to help him bathe and dress, so my spouse had to take time off work to assist his father. (Caregiver of male patient, age ≥ 80) |
| Living alone without family and friend support | I live alone and had no support with meal preparation. (Facilitated group participant) Great concern for people sent home without family to advocate for and help them. (Caregiver of female patient, age ≥ 80) I lived alone and was scared to be by myself. (Female patient, age 26–49) |
| Assumptions about family and friend support during discharge planning | Disheartening. It is unfair to assume family members could just drop everything to be home with their loved ones, especially after long, unexpected illness. (Caregiver of female patient, age ≥ 80) No questions about home environment — it seemed to be assumed I’d be there 24/7. (I was). (Caregiver of male patient, age 65–79) |
| Respite for caregivers | My dad and mom moved into my sister’s house as qualified help was not available on a consistent basis (not even private care). My sister received daily calls of no care available. In 3 months, she has received respite twice so she could buy groceries. (Caregiver of person age ≥ 80) Respite care has been meagre. It’s a struggle to get 1 day away from the house to be able to travel out of town for shopping, business. (Caregiver of female patient, age ≥ 80) |
Note: CCAC = Community Care Access Centre, LHIN = Local Health Integration Network, OHIP = Ontario Health Insurance Plan, PSW = personal support worker.
↵* Respondent age and gender are provided when available; caregiver respondents provided the age and gender of the patient they were caring for.